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GRADUATE SCHOOL Thesis/Dissertation Acceptance This is to certify that the thesis/dissertation prepared By Elizabeth Anne Sternke Entitled Unruly Bodies: Infertility as a Disability
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Elizabeth Grauerholz
Elizabeth A. Hoffmann
Jeni M. Loftus
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____________________________________ 10/27/2010
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PURDUE UNIVERSITY GRADUATE SCHOOL
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Title of Thesis/Dissertation: Unruly Bodies: Infertility as a Disability
For the degree of
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I certify that in the preparation of this thesis, I have observed the provisions of Purdue University Executive Memorandum No. C-22, September 6, 1991, Policy on Integrity in Research.* Further, I certify that this work is free of plagiarism and all materials appearing in this thesis/dissertation have been properly quoted and attributed. I certify that all copyrighted material incorporated into this thesis/dissertation is in compliance with the United States’ copyright law and that I have received written permission from the copyright owners for my use of their work, which is beyond the scope of the law. I agree to indemnify and save harmless Purdue University from any and all claims that may be asserted or that may arise from any copyright violation.
Elizabeth A. Sternke
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12/10/2010
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UNRULY BODIES: INFERTILITY AS A DISABILITY
A Dissertation Submitted to the Faculty of Purdue University by Elizabeth Anne Sternke
In Partial Fulfillment of the Requirements for the Degree of Doctor of Philosophy
December 2010 Purdue University West Lafayette, Indiana
UMI Number: 3453386
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ACKNOWLEDGMENTS
Colleagues too numerous to mention have provided me with their support, expertise, and their friendship as I have worked on this research project. In particular, I wish to acknowledge the following people: I wish to thank my major professor and dissertation committee chair, Jack Spencer, for treating me as intellectual equal, challenging me in areas I found difficult, helping me maintain my focus, encouraging me when needed, and nudging me when required. Your influence on my work and perspective has been profound. I also wish to thank my dissertation committee members, Liz Grauerholz, Beth Hoffmann and Jeni Loftus for their unfailing belief in me and in this project along with their willingness to share their expertise, advice and suggestions. In addition, I wish to thank Kathy Abrahamson, for early stage discussions on framing my research questions as well as great advice on keeping my perspective; Dr. Janet Afary, for her support and mentoring; Debbie Coe, for her continuous scholarly and emotional support throughout our graduate careers; Dr. Ken Ferraro, for pointing out to me the underlying themes in all my research and helping me to see value in pursuing that work. Mychii Null, for in-depth theoretical discussions and for her unflagging belief in my abilities, knack at helping clarify my ideas for others, for listening when I needed an ear and for helping me better understand myself; Melissa Jo Stacer, for her Melissa Joedness, her productive insights and her kind but determined prodding.
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Finally, I wish to thank my father and mother, George and Joanne Provan, for all the love and support they have offered over these years. Your help as I raised my children, worked and pursued my academic goals has been invaluable. And, to my dauthers, Sasha and Skylar, along with whom I continue to love, learn and grow each and every day I dedicate this dissertation. I truly believe that you have taught me more than I will ever be able to teach you. Thank you, dear ones, for traveling along this road with me. You help me to see that there are reasons beyond gendered expectations that women wish to have children in their lives as they also seek to make their own intellectual and physical contributions to society at large.
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TABLE OF CONTENTS Page LIST OF TABLES ............................................................................................................ vii LIST OF FIGURES ......................................................................................................... viii ABSTRACT....................................................................................................................... ix CHAPTER 1: LITERATURE REVIEW AND THEORETICAL CONCEPTUALIZATION………………………………………………………………..1 1.1. Introduction .............................................................................................................. 1 1.2. Motherhood, Identity and Stigma ............................................................................. 4 1.2.1. The Motherhood Mandate and Infertility............................................................4 1.2.2. Implications for Identity......................................................................................7 1.3. Failed Motherhood and Stigma Management ........................................................ 15 1.3.1. Failed Motherhood ............................................................................................15 1.3.2. Stigma Management .........................................................................................17 1.4. Theoretical Conceptualization ................................................................................ 22 1.4.1. Constructivist Grounded Theory.......................................................................23 1.4.2. Narrative Analysis.............................................................................................25 1.4.3. Integrative Framework ......................................................................................28 1.5. Research Questions ................................................................................................ 30 1.6. Significance of Research ........................................................................................ 32 CHAPTER 2. METHODS AND DATA .......................................................................... 34 2.1. Methods .................................................................................................................. 34 2.1.1. Self-Reflexivity and Sensitizing Concepts .......................................................35 2.1.2. Coding and Analysis Procedures ......................................................................42 2.2. Data......................................................................................................................... 47 2.2.1. Individual Interviews ........................................................................................48 2.2.2. Advocacy/Support Group Websites ..................................................................54 2.2.3. Law Review Articles .........................................................................................59 CHAPTER 3. WOMEN’S EXPERIENCE OF INFERTILITY:STORIES FROM THE FIELD ............................................................................................................................... 66 3.1. The Import of In-Depth Interviews as Narrative Data ........................................... 66 3.2. Infertile Women’s Experiences of Stigma.............................................................. 69 3.2.1. The Dilemma of Disclosure ..............................................................................72 3.2.2. The Decision to Educate ...................................................................................78 3.2.3. Religion and ART: Reflections and Reflexivity ...............................................80 3.3. The Effects of Discrediting and Discreditable Status............................................. 81
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Page 3.3.1. Effects on Self-Confidence and Self-Esteem ....................................................82 3.3.2. Effects on Marital Relationships .......................................................................84 3.3.3. Effects on Quality of Life .................................................................................86 3.4. Individual Accounts of Infertility as a Disability ................................................... 87 3.4.1. Unpleasant Awakenings ....................................................................................87 3.4.2. Control: Loss and Acquisition ..........................................................................88 3.5. The Benefits of Labeling Infertility a Disability .................................................... 90 3.6. Summary................................................................................................................. 94 CHAPTER 4. CONSTRUCTING AN INFERTILE IDENTITY: ADVOCACY GROUP NARRATIVES ................................................................................................................. 96 4.1. The Import of Advocacy/Support Group Websites as Narrative Data ................... 96 4.2. Infertility And Stigma............................................................................................. 97 4.2.1. The Interaction of Discredited and Discreditable Identities .............................98 4.2.2. Infertility and Discreditability.........................................................................105 4.2.3. Mitigating the Stigma of Infertility .................................................................109 4.3. Constructions of Infertility as a Disability ........................................................... 113 4.3.1. Narratives of Similarity: Constructing Infertility as a Disability...................113 4.3.2. Narratives of Difference: Infertility as a Unique Case Of Impairment...........122 4.4. Narratives of Possibility: Implications of Self-Labeling as Disabled .................. 129 4.4.1. Personal Implications ......................................................................................129 4.4.2. Social and Cultural Implications .....................................................................134 4.5. Summary............................................................................................................... 135 CHAPTER 5. CONSTRUCTING THE INFERTILE AS A PROTECTED CLASS: LAW REVIEW NARRATIVES............................................................................................... 138 5.1. The Import of Law Reviews as Narrative Data .................................................... 138 5.2. Infertility and Stigma ............................................................................................ 141 5.2.1. Infertility and the Motherhood Mandate .........................................................142 5.2.2. Ideal Worker Norms and the Double Bind .....................................................148 5.2.3. Women, Inequalities and Discrimination........................................................153 5.3. The Narrative of Infertility as a Disability: Framing Case Law and Legislation . 159 5.3.1. Reproduction as a Major Life Activity ...........................................................162 5.3.2. Unique Attributes in the Social Construction of Infertility as a Disability.....172 5.4. Narratives of Rights and Responsibilities: Implications of Self-Labeling as Disabled ....................................................................................................................... 190 5.4.1. Personal Implications ......................................................................................190 5.4.2. Social Implications ..........................................................................................195 5.4.3. Cultural Implications.......................................................................................202 5.5. Summary............................................................................................................... 205
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Page CHAPTER 6. DISCUSSION, CONTRIBUTIONS AND FUTURE RESEARCH ....... 207 6.1. Discussion............................................................................................................. 207 6.1.1. Introduction and Significant Findings.............................................................207 6.2. The Story of the Social Construction of Infertility as a Disability ....................... 212 6.2.1. Metanarrative ..................................................................................................212 6.2.2. Narrative Differences ......................................................................................215 6.2.3. The Metanarrative and Unruly Bodies ............................................................218 6.3. Contributions to the Literature ............................................................................. 221 6.3.1. Methodological Contributions ........................................................................221 6.3.2. Substantive Contributions ...............................................................................223 6.4. Future Research .................................................................................................... 228 REFERENCES ............................................................................................................... 235 APPENDICES Appendix A. Outreach Letter ...................................................................................... 246 Appendix B. Recruitment Flyer .................................................................................. 247 Appendix C. Web Posting ........................................................................................... 248 Appendix D. Questionnaire Letter............................................................................... 249 Appendix E. Mail Survey ............................................................................................ 250 Appendix F. Interview Schedule ................................................................................. 258 Appendix G. Consent Form ......................................................................................... 261 VITA ............................................................................................................................... 264
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LIST OF TABLES Table
Page
Table 2.1 Descriptive Statistics for Respondents ............................................................. 52 Table 2.2 Descriptive Statistics for RESOLVE website data ........................................... 58 Table 2.3 Frequency Distribution by Year for Initial Sample of Law Review Articles ... 61 Table 2.4 Frequency Distribution by by Type of Article for Initial Sample of ................ 61 Table 2.5 Frequency Distribution by Year for Reduced Sample of Law Review Articles .............................................................................................................................. 63 Table 2.6 Frequency Distribution by Type of Article for Reduced Sample of................. 63 Table 2.7 Frequency Distribution by Year for Final Sample of Law Review Articles .... 64 Table 2.8 Frequency Distribution by by Type of Article for Final Sample of ................. 64 Table 5.1 Cited Cases, Acts and Regulations ................................................................. 139
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LIST OF FIGURES Figure
Page
Figure 1.1 Gender Feedback Loop...................................................................................... 5 Figure 1.2 Integrative Framework .................................................................................... 29 Figure 2.1 Conditional Matrix .......................................................................................... 45
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ABSTRACT Sternke, Elizabeth A. Ph.D., Purdue University, December, 2010. Unruly Bodies: Infertility as a Disability. Major Professor: J. William Spencer. The persistence of the social and cultural value of motherhood in the U.S. along with the advancement of assistive reproductive technologies creates a double-bind for women who struggle with infertility (Russo 1976; Zucker 1999; Greil 2002; McQuillan et al. 2003; Loftus 2004; Sternke 2005). This circumstance leads women with infertility to feel stigmatized in a variety of ways. Their adult life course is not progressing as expected and, therefore, they are not fulfilling personal and social gender expectations. Technology has advanced rapidly since the first documented artificial inseminations in the early 1900s to a battery of treatments, including in vitro fertilization through egg and/or sperm donations, which are available today. These advancements have increased the pressure on women to bear biological children rather than seek other outlets for childbearing and caretaking. This causes many women with infertility to feel pressured to pursue the complete range of available treatments despite their financial and career, physical and psychological costs. For these reasons, a number of women with fertility problems have sued insurance companies and employers to gain coverage for fertility treatments and additional paid time away from work to pursue them. In several legal cases The Americans with Disabilities Act of 1990 was used to claim infertility is a disability and those who suffer from this disability should be granted access to financial resources for
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treatment. In this study I investigate the connection between women’s experiences of infertility and the personal and social implications of legally constructing infertility as a disability under the American with Disabilities Act of 1990 using a triangulated methods and data. In looking at infertility --a health condition that can trigger multiple responses legally, psychologically, and socially – this study adds new insights into a range of central sociological foci, including stigma, self-labeling, and embodied identity, as well as further developing our understanding of the social construction of disability.
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CHAPTER 1: LITERATURE REVIEW AND THEORETICAL CONCEPTUALIZATION 1.1. Introduction Despite a myriad of cultural and social changes in role expectations for women in the 20th century, pregnancy and motherhood retain their priority over other roles for women in the U.S. today (May 1995; McQuillan, Greil, White and Jacob 2003). The persistence of the social and cultural value of motherhood in the U.S. along with the advancement of assistive reproductive technologies creates a double-bind for women who struggle with infertility (Russo 1976; Zucker 1999; Greil 2002; McQuillan et al. 2003; Loftus 2004; Sternke 2005). By this I mean that there is social pressure to become a mother, a biological mother, at any cost with little support and relatively low odds of success. This circumstance leads women with infertility to feel stigmatized in a variety of ways. Their adult life course is not progressing as expected and, therefore, they are not fulfilling personal and social gender expectations. Due to this failure, women with infertility often report feelings of alienation and psychological distress. In the past, women managed these feelings differently than they do today. Before assistive reproductive technologies were readily available, women managed their stigma and its associated characteristics through constructing other types of mothering and caretaking identities.
However, technology has advanced rapidly since the first documented
artificial inseminations in the early 1900s to a battery of treatments, including in vitro
2 fertilization through egg and/or sperm donations, which a available today. These advancements have increased the pressure on women to bear biological children rather than seek other outlets for childbearing and caretaking. This causes many women with infertility to feel pressured to pursue the complete range of available treatments despite their financial and career, physical and psychological costs. The financial cost of fertility treatments is of major concern for women with infertility as there is minimal coverage for assisted reproductive technologies in the U.S. (Ireland 1993; McQuillan et al. 2003). Currently only14 states have any insurance legislation in place that mandate that insurance coverage for fertility treatments even be offered (National Conference of State Legislatures 2008). In addition, treatments occur on a demanding schedule and include frequent doctor’s visits, require time away from work and additional down-time at home due to their physically and psychologically debilitating nature (White, McQuillan & Greil, 2006). Further, the treatment cycle can be a psychological roller coaster. Each month women ride from the high of ovulation, to sexual intercourse or insemination. This is usually followed by the onset of menses, to brief but anguished feelings of failure, and moving directly into the next treatment cycle. This cycle does not provide women with time or energy for deep grieving over unsuccessful procedures or miscarriages. These feelings often remain unexamined and unprocessed. Women who are fortunate enough to conceive a child and carry it to term report that even then the psychological trauma of the infertility experience is deeply held and long-lasting. For these reasons, a number of women with fertility problems have sued insurance companies and employers to gain coverage for fertility treatments and
3 additional paid time away from work to pursue them. RESOLVE, a national advocacy and support group for women with fertility problems, is also calling for new laws that would require state and national legislation to include these rights. In several legal cases The Americans with Disabilities Act of 1990 was used to claim infertility is a disability and those who suffer from this disability should be granted access to financial resources for treatment. Interestingly, this phenomenon aligns with previous sociological research about women’s experiences of infertility in which infertility has been likened to a chronic illness or a disability. In this study I investigate the connection between women’s experiences of infertility and the personal and social implications of legally constructing infertility as a disability under the American with Disabilities Act of 1990. In order to understand how this process works and why some women are employing this strategy, I utilize Erving Goffman’s (1963) framework regarding stigma. I incorporate the notions of discredited and/or discreditable identities as a basis for an analysis of the stigmatizing nature of infertility and the implications of self-labeling behavior (Matza, 1969; Thoits, 1985 and 2005). 1 This theoretical perspective is vital as it reveals the connection between a pro-motherhood culture with a rapidly evolving medical technology which offers promise, yet adds further stressors to infertile women’s lives (Becker and Nachtigall 1994; Sandelowski 1999). In looking at infertility -- a health condition that can trigger multiple responses legally, psychologically, and socially -- I hope to gain new insights into a range of central sociological foci, including stigma, self-
1
Feminist standpoint theorists Sprague and Hayes (2000) consider the empowering nature of selflabeling in their work and term it instead self-determination. For this study, I employ the selflabeling strategy but believe that their concept deserves attention as I take this work forward.
4 labeling, and embodied identity, as well as further developing our understanding of the social construction of disability. 1.2. Motherhood, Identity and Stigma 1.2.1. The Motherhood Mandate and Infertility Kitzinger & Willmott (2002) claim that “the social construction of motherhood presents it as the epitome of feminine fulfillment, the means by which women achieve full adult status and demonstrate their female identity” (358). Research on women’s contemporary lives shows that there are many ways women are still held back from achieving personal and professional goals due to constraints placed on them to maintain traditional gender roles, particularly as relates to motherhood (Sandelowski 1990; Ginsburg and Rapp 1991; Heinamaa 1997; Letherby 1999). “For women especially, parenthood may be considered a master status in the sense that motherhood casts its shadow over other statuses and permeates the performance of a wide range of social roles” (McQuillan et al. 2003:1008; also reported by Matthews & Matthews 1986 and Letherby 1999). Crawley, Foley and Shehan (2008) have constructed a model that helps to explain how gendered messages, such as the importance for women of maintaining the social role of mother in order to fulfill norm expectations, give rise to gendered consequences, for example the continued difficulty women face in achieving workplace equality due, in part, to their reproductive capacity. In their model, which appears to be a more complex version of Cooley’s Looking Glass Self, social control and surveillance occurs as a primary instigator of gendered messages (see Figure 1, per Crawley et al. 2008:115). These messages are received through multiple sources, such as doctors, parents, teachers, peers, media, etc., and the self. Confirmation of these messages comes
5 from multiple sources at multiple levels and occurs on an ongoing basis. These messages regarding biological sex influence how we think of being male and female and, further, how these bodies should look and behave. According to Crawley et al. (2008) this performative feedback loop illustrates the process through which social and cultural gender norms are constructed and maintained. Through the feedback look of performativity and surveillance, gender norms, such as the expectation that women must bear children in order to be fully feminine, to be a complete woman, are continually reinforced and reified. In this way, they claim, gender becomes equated with sex and is viewed as an innate rather than achieved way of being. In this way, many women feel that achieving motherhood is an innate need or desire rather than a social expectation and, thus, the linkage between women’s reproductive bodies and the constraints of inhabiting a woman’s reproductive body, are also reinforced and reified.
Figure 2.1 Gender Feedback Loop
6 These constraints are intensified, rather than alleviated, when women are involuntarily childless. Not fulfilling motherhood expectations are often grounds for women with infertility to experience a deep sense of distress and inauthenticity (Denny 1994; McQuillan et al., 2003). Infertility is described as a “major disruption in one’s projected life course, a failure to live up to normative notions about what it means to be a woman in American society” (Greil 2002:101), an “unwelcome interruption” of a woman’s life course (McQuillan et al. 2003:1007) and a life stressor of middle adulthood (Jordan and Revenson 1999:342). The belief that one can control, and should control, the outcome of one’s life course is central to the American ideology of personal freedom and independence. Accordingly, it is considered women’s social responsibility to overcome fertility problems in order to have a biological child as a “…women with no children still represent[s] the “other” in societies that value children and motherhood (even if this value is not structurally supported)” (Letherby 1999:359). Therefore, the lack of control over becoming pregnant when one wishes to is both a life course issue and an issue of social responsibility. Due to the persistence of the motherhood ideal, attitudes towards childless women in U.S. have not changed much over the past decades. Women who experience infertility must negotiate their interactions with others based in our expectations regarding marriage and family, medicine and healthcare, work and caretaking, the self and the body. Mueller & Yoder (1999) report that attitudes towards women vary based on their motherhood status. Across demographic characteristics, they found that women who are mothers are more highly thought of by respondents than women without any children. According to their results, being a woman who is childless, whether by choice or by chance, creates
7 difficult circumstances for them to overcome (Lampman & Dowling-Guyer, 1995, relate similar findings). In research conducted by with women experiencing Poly Cystic Ovarian Syndrome (PCOS) it was observed that women who are observably feminine, for example, being free from body and facial hair, as well as those who fulfilled societal gender roles, especially the role of biological mother, were more positively favored than women who exhibited more masculine traits (Kitzinger & Willmott 2002). Greil (2002) also claims that infertility is a “major disruption in one’s projected life course, a failure to live up to normative notions about what it means to be a woman in American society” (101). It is not surprising that recent studies on women and infertility indicate that women and their bodies are marginalized and viewed as materially and symbolically deviant when they cannot or do not become pregnant and give birth to children (Miall 1986; Greil 1991a; Greil 1991b; Whiteford and Gonzalez 1995; Denny 1996; Frank 1997; McQuillan et al. 2003). Not having children, then, puts a woman’s gender into question—after all, without children, is woman really a woman (Heinamaa 1997; Letherby 1999; Scott 1999)? 1.2.2. Implications for Identity The question of how gender motherhood norms and the experience of infertility shape women’s identities has been a key question of much of the research in this area. Most social psychological studies present identity in a Cartesian fashion, meaning that the self and identity are often analyzed as though they are abstract constructions that are separate from the material, physical, felt world. However, Stryker and Burke (2000) use a broad definition that helps us understand how the concept of identity in social psychology can be taken further. They state that identity refers to the “parts of a self
8 composed of the meanings that persons attach to the multiple roles they typically play in highly differentiated contemporary societies” (284). An embodied identity can and does extend this definition. It is defined as an identity where there is an explicit, interactive link of the body with the mind as playing significant, interrelated roles. Lyon & Barbalet (1994) state that: “persons do not simply experience their bodies as external objects of their possession or even as an intermediary environment which surrounds their possession or even as an intermediary environment which surrounds their being. Persons experience themselves simultaneously in and as their bodies” (54). The key to understanding the embodied identity is that we do not form a self or an identity free of our bodily, physical world and cannot, therefore, experience the world as a disembodied entity. Budgeon (2003) urges us to think of bodies thus as events—not solely subject or object but, rather a lens through which to view and engage with our material and representational worlds. As Jean Paul Sartre [1956](2001) insisted, “I am my body to the extent that I am” (302). Matters of fertility and reproduction are inextricably tied to our bodily selves. Bailey (2001) explores gendered notions of the body in her examination of first-time mothers and embodied selves. She found that through bodily changes during pregnancy that women can utilize these changes in order to negotiate their social positions. She also found that women may feel reduced to their biological bodies during pregnancy and that the internalization of these feelings act as a type of social control over women. Warren and Brewis (2004) claim that pregnancy “may illuminate the relationship we in the modern West have with our materiality more generally” (220). The notion that our bodies are resources that we can control, shape and mold comes into direct conflict with
9 the bodily experience of pregnancy and childbirth. They state that the very act of engaging with a body that has an engorging belly and breasts, illness and discomfort, and lack of ability to carry out some day-to-day activities brings women to realize that there is an inherent lack of control over their bodies that occurs during pregnancy. Further, experiencing this lack of control over their bodies can either lead to a willful struggle to gain control (hence, the title of their article, “Matter over Mind?”) or it can lead to a more integrated understanding of oneself as both a physical and psychological being—an understanding wherein giving up control can actually be empowering. While many studies of infertility refer to bodies, particularly women’s bodies, as the site from which fertility problems emanate most researchers tend to be more interested in the psychological effects of the infertility experience as well as the social norms, roles and values that comprise the external experience of infertility. Clarke, Martin-Matthews and Matthews (2006) look specifically at embodied identity as it is constructed and negotiated by women with infertility. Their analysis revealed that the experience of infertility “illuminates the centrality of the body to the individuals sense of self…as both subject and object [which exist in] a mutually influential relationship with the self” (109). In large part, they feel that their data shows how the body shapes the “meanings of femininity, masculinity, parenthood and adulthood” (109). They claim that the case of infertility provides an ideal lens through which to view the body/mind connection as the infertility experience creates an awareness of these connections for women. As a result, they report that the women in their study were not only much more aware of their own bodies and how they functioned, they were also more aware of how their bodily experiences affected their identity, their relationships, and their day-to-day
10 lives. This highlights the claim by those who study embodied identity that how different bodies, and therefore individual people, are perceived, valued and treated are central to understanding how and why human beings act as they do (Goffman [1963] 1986; Synnott [1993]1997; Lyon and Barbalet 1994; Hancock, 2000; Shilling, 2003). While not often explicitly named in the sociology of the body literature, theories of the body are directly tied to stigma. As a theoretical perspective, the sociology of the body maintains that the human body serves individuals as a material, biological organism as well as an abstract one that is inscripted with social value (Berthelot 1991; Frank 1997). Individuals, and the bodies they inhabit, who are ‘normal’ are seen as those that help society run “systematically and according to plan” (Moser 2005:672). This perception promotes the visibility of the non-standardized, or non-normative, subject/body as attached, dependent, unconstrained and with inherent capacities for being constrained, objectified and stigmatized (Stocker 2001; Draper 2003). Stigma is constructed through the process of ongoing interactions. Its affects are deeply felt by the stigmatized individual, so deeply felt, in fact, that stigmatization often leads to changes in their daily routines as well as to changes in their deepest feelings about themselves (Goffman [1963] 1986; Link and Phelan 2001; Lee and Craft 2002; Green 2003; Green, Davis, Karshmer, Marsh and Straight 2005). In their work with cancer patients, Waskul and van der Reit (2002) use the term “abject embodiment” to describe the same phenomenon (291). They claim that the abject body, because it is unreliable or difficult to control, can compound feelings of alienation for the person experiencing a life-threatening disease. These feelings serve to create experiential and conceptual distance between the self and the body—a distance that
11 activates a person’s defense mechanisms in an attempt to manage self-hood positively while experiencing the abject body (Waskul and van der Reit 2002). Schneider and Conrad (1980), in examining epilepsy and the epileptic experience, suggest that this is a significant stigma management technique that can be extended to interactions with others. Their findings reveal that control, either through disclosing their illness or concealing it, is a crucial component in positively managing self-hood. Cahill and Eggleston (1995) provide a further example of the import of control in maintaining a positive self-image in their work on the stigma associated with using a wheelchair. While wheelchair users do have some physical agency within the pubic realm there are many times in which they must seek assistance from others. This places wheelchair users in the position of appearing to be incompetent social actors. “Our public places may now be more accessible to and those who populate them more accepting of wheelchair users than in the recent past, but wheelchair users are still made to feel like visitors who are dependent on the graciousness of their walking hosts” (696). In order to reclaim a positive self-image, wheelchair users must often engage in “ritual interchanges…of apologies, accounts, gracious provision of assistance, and expressions of gratitude” to overcome their own and others notion that they are not self-sufficient actors (696). The two types of stigma that are directly tied to these notions of identity and embodiement are discredited and discreditable identities. A discredited identity is one that is observable, an identity within which one is physically subsumed and from which one cannot “pass” as normal in day-to-day interactions as is the case with those who use wheelchairs (Goffman [1963] 1986; Greil 1991b; Whiteford and Gonzalez 1995; Stefan
12 2003; Green 2005). Other examples include physical deformities or disabilities, psychological conditions or character defects that cause a person to act improperly in public, as well as other forms of group norms deviations that are publicly observable, such as the lack of a pregnant body or children (Goffman [1963] 1986; Whiteford and Gonzalez 1995; Link and Phelan 2001; Lee and Craft 2002; Ahmed 2004; Green 2005). A discreditable identity, on the other hand, describes an identity irregularity that is not directly observable or not publicly acknowledged such as suffering from cancer or epilepsy (Goffman [1963] 1986; Greil 1991b; Whiteford and Gonzalez 1995; Stefan 2003; Green 2005). This type of stigma is one that has to be divulged and which is usually developed through one-on-one interactions with other individuals. For this reason, discreditable identities are sometimes referred to in the literature as “secret” or “hidden” stigmas (Greil 1991b; Becker and Nachtigall 1992; Whiteford and Gonzalez 1995; Green 2005). Discreditable stigmas can include, but aren’t limited to, psychological conditions, physical conditions such as chronic disease, character flaws, or undisclosed personal experiences, such as domestic abuse, and infertility (Miall 1986; Greil 1991b; Whiteford and Gonzalez 1995; Persson, Race and Wakeford 2003; Stefan 2003). In past research, infertility has been treated mainly as a discreditable attribute— one that women can hide fairly easily from others. I contend, however, that infertility is both a discreditable stigma as well as a discrediting one. Herman (1993) reports the occurrence of the phenomena of inhabiting both a discreditable as well as a discreditable identity in her work on ex-mental patients. She claims that mental illness is mainly conceptualized as a potentially discreditable identity because is it not readily apparent to
13 others (299). In order for it to become a “stigmatizing attribute” its existence must be disclosed to others. However, she points out that there are many attributes of mental illness that can be discrediting. For example, individuals with mental illness may exhibit “inappropriate patterns of social interaction” and may have physical manifestations of their illness due to “the side effects of medication” (300). Infertility can be hidden from others for varying periods of time. For the most part, there are no outward signs of disease or distress. However, once infertility issues have been discovered or disclosed the stigma associated with this identity must be managed in some for or other. This shows that infertility is indeed discreditable. Infertility can also be a discrediting attribute due to the importance that motherhood has in our culture. Women who are not pregnant, have not been seen pregnant previously, or do not have other outwards signs that they are mothers, such as having children in tow or displaying pictures of children at their workplace, are assumed to be childless. As stated previously, women without outward signs of children are viewed negatively in our society and are, therefore, also stigmatized. Matthews & Matthews’ (1986) research suggests “infertility (at least for women) may have a greater effect on social identity than many other types of stigma” (646). Understanding that infertility constructs both types of stigmatized identities is important for three reasons. First, possessing both a discreditable and a discrediting identity leads means that there are quantitatively and qualitatively more challenges to overcome in order to maintain a normative self-presentation. Second, individuals who have both types of stigma to overcome must develop skill sets to overcome both types of stigma. Third, unlike Herman’s example of ex-mental patients, infertility is not a condition that, for most women, can be transformed. Rather, it is a condition that might be managed or
14 mitigated for a period of time where they may become pregnant and they may bear a biological child. However, if they are fortunate for this to occur they most likely are still physically infertile. As one of my respondents put it, “you never graduate from infertility.” Stigmatized identities lead to two forms of stigmatization: felt stigma and enacted stigma. Felt stigma involves the perceptions of the stigmatized person that they are being labeled, stereotyped, or separated from others. Enacted stigma, on the other hand, refers to actual status loss and specific acts of discrimination. Since the status of mother plays such an important part in the social role expectations for women, the bodies that produce offspring are of both high symbolic and material value (Whiteford and Gonzalez 1995; McQuillan et al. 2003). It is not a surprise, then, that in many studies, women who struggle with infertility report both types of stigmatization. For example, Greil reports that women seeking treatment for infertility perceive that they are a source of anxiety for those surrounding them (Greil 1991a; also in Denny 1994; Frank 1997; Loftus 2004 and Sternke 2005). Perhaps due to this anxiety, women’s co-workers, close family, friends and acquaintances often ask about their reproductive status or demand explanations for their childlessness. This provokes feelings of inadequacy and otherness for these women (Matthews and Matthews 1986; Greil 1991a; Lampman and Dowling-Guyer 1995; Loftus 2004; Sternke 2005). Further, women report that they attempt to avoid the feelings precipitated by these types of events by separating themselves from others both emotionally and physically. Seeking medical treatment also adds to perceptions of marginalization due to the seeming biologic dysfunction of their bodies (Williams and Calnan 1996; Hancock, Hughes, Jagger, Patterson, Russell, Tulle-Winton and Hughes
15 2000). These perceptions are reinforced through their interactions with sometimes insensitive medical personnel and through the invasive nature of the medical procedures they endure (Greil 1991a; Malin 2003; Loftus 2004; Sternke 2005). Status loss and discrimination occur in a variety of ways as well. Women who seek fertility treatments must account for repeated time away from work for doctor’s visits and respite time. This can lead to a perception of a decrease in job performance, ability and commitment by superiors as well as to resentment from coworkers. Friends and family may exclude childless women from social activities by isolating them at events, for example seating them with the elderly, children or with single people, not inviting them to events and ceasing to interact with them at all. 1.3. Failed Motherhood and Stigma Management 1.3.1. Failed Motherhood Wendell (1996) claims that having to identify with a body that is not normative leads us to a desire to “gain or maintain control of [the] bod[y]; conversely, the myth that we can control our bodies encourages us to strive to meet [cultural] body ideals” (91). This implies that normal or standardized subjects/bodies become invisible; they disappear into the background. We don’t consciously observe them due to their sameness and the fact that these subjects/bodies do not impinge upon normative bodily expectations. Therefore, the individuals who inhabit these bodies are felt to be independent, in control and having inherent capacities for agency and subjectivity. Those whose bodies are nonnormative, then, are felt to be dependent and viewed as objects. In general, women have a much more difficult time building a primary normative appearance, and experience, compared to men. This is due to the social construction of women’s bodies as more
16 dangerous, and less trustworthy, than men’s because of their “propensity for the natural breaking of [normative] boundaries” due to their bodies capacity to reproduce (Draper 2003:749; also see Goffman [1963] 1986 and Douglas [1966] 2002). This phenomenon can be directly observed through the public/private dichotomy represented by pregnancy. Pregnant women’s bodies may cause discomfort for some to interact with (due to the private nature of sex and sexual reproduction in our society) because they are a visible representation of breaking boundaries. However, this is also a privileged way in which to break those boundaries as in so doing a woman is fulfilling her role as child bearer and future mother--which are seen as vital to the future functioning of society as a whole (Greil 2002; Kitzinger and Willmott 2002; Draper 2003). Therefore, women who do not fulfill these roles by being visibly pregnant or visibly caring for her children is considered even more “dangerous” than most women as they are not fulfilling the role of reproducing society. Draper claims that the medicalization of “women’s business” is the principle way in which women and their bodies are objectified and regulated through which they experience the sense of a lack of control over their own bodies and their own lives (2003:750). When this occurs, stigma management or, as Moser puts it, attempts to normalize lack, help the individual suffering from disease or illness to “sustain a measure of dignified self-hood and [uphold] expressive and emotional order” (Waskul and van der Reit, 2002:500). For women with infertility, upholding order involves creating for themselves, their families, and their acquaintances a sense that they have control over their bodies and also over the “embarrassment, fear, resentment and anger” they feel towards themselves and “also as it affects others fear and anger directed at them” (Waskul & van der Reit, 2002:500).
17 Control is re-established through stigma management techniques. 2 Women in this study use a variety of these techniques including controlling access to information about themselves and their fertility struggle, separating themselves from unsupportive relationships, creating new relationships, and creating new understandings of infertility for themselves and others. 1.3.2. Stigma Management 1.3.2.1. Managing Information Schneider and Conrad ([1980]1992) believe that there are three different types of techniques that people use to cope with potentially damaging information medical information about themselves: 1) selective concealment; 2) preventive disclosure; and, 3) therapeutic disclosure; each of which is implemented strategically and situationally. Previous studies on women with infertility show that women use selective concealment for a one main reason—because they find that answering questions about their fertility status is too much of an emotional burden for them. Women cite the use of selective concealment with a wide variety of people from close family members, including parents, and coworkers to fellow congregants and new neighbors (Loftus 2004; Sternke 2005). Paradoxically, women also cite the use of preventive disclosure, of telling everyone they know of their condition and giving constant updates, in order to avoid the same painful
2
Goffman calls this work “impression management.” Impression management refers to a strategy wherein the stigmatized individual attempts to maintain as normal an image as possible, and, in so doing, disclose as little as possible about a “spoiled identity,” in order to construct and maintain positive interactions with others (255).
18 experiences (Loftus 2004; Sternke 2005). They feel that by becoming a telling machines that they can curtail others from making socially inappropriate comments or accidentally outing them to others (Loftus 2004; Sternke 2005). Further, preventive disclosure is used by women as a type of lay education in which they engage in order to help others understand that fertility is not something that can be taken for granted (Loftus 2004; Sternke 2005). Educating others assists them in shifting blame and guilt away from themselves as they seek to normalize themselves in others’ eyes (Lee and Craft 2002; Green 2003; Loftus 2004). 3 Therapeutic disclosure entails selective disclosure wherein people share their stories of their discreditable/discrediting identity in order to gain emotional support and empathy, relieve frustration and anxiety and to negotiate their own perceptions of the stigmatizing attribute (Schneider & Conrad 1980; Miall 1986; Herman 1993). One way that women with infertility employ therapeutic disclosure is through participation in online and in-person support groups. In these settings, women are able to identify with others who have their same, or similar, condition, have experienced similar events and consequences, and who offer them advice and education (Loftus 2004). Therapeutic disclosure can also be an empowering act in which self-labeling as infertile creates a connection with other women, across time and space, which have experienced
3
Thoits (2005) also discusses the importance of peer education by stigmatized individuals in her work on mental illness and self-labeling. This is important to consider in an examination of the infertility experience as I propose to employ the power of both the concepts of self-education and educative disclosure in order to consider the case of infertility and self-labeling as disabled.
19 painful longing for child that remains unfulfilled. In this way, therapeutic disclosure is both cathartic and constructive (Schneider & Conrad 1980; Miall 1986; Herman 1993). 1.3.2.2. Managing Proximity Stigmatized individuals use the act of physical separation from others when the emotional and psychological pain of remaining in close proximity is too much to bear. Green et al. (2005), state that “separation occurs when the reactions of others produce a pronounced sense of being devalued, disrespected, or viewed as less than fully human” (205). Further, managing proximity can also be employed in an attempt to protect ourselves from feelings of vulnerability, guilt and shame (Miall 1986; Whiteford and Gonzalez 1995; Link and Phelan 2001; Green, Davis et al. 2005). Separation usually entails leading a “restricted” life—in other words, often avoiding people and situations that would cause them to dwell on these feelings of inadequacy, or even changing their routines entirely and cutting off existing relationships, changing jobs or churches, or moving to a new community (Charmaz 1983; Miall 1986). This is also true for women who struggle with infertility. Women report that infertility can seriously affect their marriage relationships leading to changes in communication and interaction patterns. This particularly occurs when one spouse wishes to continue with medical treatments and the other does not (Loftus 2004; Sternke 2005). Other family relationships are also seriously affected and some women find that they can longer participate in family gatherings or even end communication with certain family members. In particular, respondents found baby showers and family reunions especially difficult to attend. In these studies women also report that they have moved to different faith communities either because of philosophical differences on the implementation of assisted
20 reproductive technologies or because they wished to avoid discussing their infertility status within that community. While women claim that negative experiences account for separating themselves from others, many also report that they are building new relationships, becoming members of new groups and finding new outlets through which to alleviate pain and suffering. 1.3.2.3. Managing the Future Whether or not they separate themselves from existing relationships, women with infertility do appear to form new relationships with others that have, or had, similar experiences (Loftus 2004; Sternke 2005). Like other stigmatizing identities, once a women has disclosed her infertility struggles she finds that another family member, friend, co-congregant or co-worker shares that experience. In this way, many of these women form a bond with each other and this relationship may fan out into other empathic relationships. Women with infertility are also known to participate in list-serves, post on message boards and create web-logs on which they chronicle their experiences. A more formalized version of these empathic relationships exists in the form of advocacy and support groups. Women in this study belong to peer-to-peer support groups through the auspices of RESOLVE—the largest, national U.S. infertility advocacy and support organization. Women collect and share information as well as provide emotional support for each other through these peer-led groups. In creating new relationships, many women find that they are not alone in their struggle and that they can participate in a group where being stigmatized is the norm. This type of consciousness-raising activity helps them to see themselves, and others, in new ways. Not only is this activity empowering in and of
21
itself but it can also serve as a platform from which women begin to advocate for the fulfillment of their emotional, psychological and physical needs. Advocacy work is seen through networking activities, caregiving, and through battling with insurance companies over coverage of fertility treatments. The availability of infertility treatments for average women is a relatively new trend in healthcare (Frank 1997; Malin 2003; Loftus 2004). Due to the rapid advancements in technology and the availability of cutting edge treatments for those who have the financial resources with which to access them, women with infertility believe that they can and will achieve their goal of bearing a biological child (Sandelowski 1990; Becker and Nachtigall 1994). According to Sandelowski (1994), the notion that infertility can be “cured” adds to women’s “already burdensome responsibilities for good reproductive outcomes” (14). Further, Becker & Nachtigall (1994) report that women who seek help in becoming pregnant may question whether or not treatments are risky but are still likely to attempt as many treatments as they can withstand physically and financially. Bloomfield & Vurdubakis (1995) describe this as “boundary repair work” wherein women are fitted, or fit themselves, back into their appropriate social roles through medical interventions to regain control over their bodies (538). Medicalization is often critiqued by social scientists because this process transforms people into patients and patients into raw materials. However, if the person/patient shapes that medicalization it can also serve as a portal to reconfiguring how a medical condition is perceived and, therefore, how the person/patient is treated by others.
22 One such example is seen through our new understanding of disability since the implementation of the Americans with Disabilities Act of 1990. Since its enactment, people with disabilities have gained much greater access to places, events and activities than ever before in our society. Moser (2005) claims that this is due to disabled people’s ability to interact with others as competent, independent individuals who are in control of their own lives rather than as invalids who are incompetent and dependent solely on others for their care. Normalization has occurred through the medicalization of their conditions and furthered by the recognition of their legal rights to accessing buildings as well as accessing good health care, good jobs and a good education. This further empowers people with disabilities to lead self-directed, independent lives. Lawsuits brought against employers and insurance companies by women with infertility to gain access to treatment are another such case. By claiming disability status, these women may not only receive financial gains and access to a higher level of medical care but may also provide education on their condition to the public. In educating the public, they may be able to alleviate sources of distress for themselves and for others like them. In this way, the process of labeling infertility as a disability may be a power act of selfempowerment for women with infertility. 1.4. Theoretical Conceptualization Within this research project, I am examining an emerging phenomenon. This calls for a an open approach to both data and theory. In order to examine this phenomenon across levels of analysis, I use three sets of data: 1) interviews regarding women’s experiences of and attitudes towards infertility; 2) published claims made by RESOLVE, a national infertility advocacy group, concerning both legal designations of
23 infertility and the fight for insurance coverage for fertility treatments; and, 3) law review articles regarding definitions of infertility, insurance coverage for infertility, and examinations of cases where the American’s with Disabilities Act has been used to claim that infertility is a disability. Further, in order extend and build theory in this area I am also integrating two theoretical perspectives to help me approach, analyze and explain this phenomenon: constructivist grounded theory and narrative analysis. 1.4.1. Constructivist Grounded Theory There are two major philosophies concerning the building of theory with a grounded approach. One is a positivist philosophy, in which the goal of building theory is to seek and explain causes of a problem and predict future behaviors or actions (Charmaz 2006). This approach mirrors that of positivist, quantitative research and is the basis on which grounded theory originated. However, as grounded approaches to conducting analyses and constructing theory have developed further and interest in qualitative research has been rekindled, and mirroring positivist, quantitative research approaches has become less and less important in order for it to be taken seriously in the field, constructivist grounded theory has gained prominence in the field. A constructivist approach to grounded theory assumes “emergent, multiple realities,” where “facts and values are inextricably linked…truth is provisional…[and] social life [is viewed as] processual and socially constructed” (Charmaz 2006:126). Importantly, it gives “priority to showing patterns and connections rather than to linear reasoning” (Charmaz 2006:126). The law provides few direct forms of recourse for women seeking recognition of their infertility diagnoses as disabling, organizations utilize their resources to unite their membership under a cause but the ways in which they strike at the problem of
24 limited social and financial support vary widely, and individual women’s physical, psychological and material are also diverse. This is why a constructivist grounded theory approach is so vital when studying developing notions of when and how personal troubles become public issues and also how that process can be understood as is this case of the construction of infertility as a disability. Additionally, because there is an assumption in this approach that truth is provisional and that an understanding of the phenomenon under study can be interpreted in multiple ways from multiple vantage points, the researcher is also called on to acknowledge the reflexive nature of their research and their place within the research process. While this adds another level of complexity to the project and further burden on the researcher to explore, and disclose, their own experiences, life situation, and biases, it also provides the readers of the research with a more honest picture of how the research was conducted, under what circumstances and why interpretative decisions were made. One of the critiques of a grounded theory framework is that it isn’t really theoretical but, rather, that it, or the researchers that employ it, produces merely a descriptive version of attitudes, behaviors, actions and events. However, when grounded theory is used as a theory-building tool in addition to an analytic method, a positivist grounded theory approach produces “a set of well-developed concepts, which together constitute an integrated framework that can be used to explain or predict phenomena” (Strauss & Corbin 1998:15). This type of theory building is often more highly valued because it attempts to mirror standard quantitative analyses and their associated theorization. In this research project, however, I utilize a constructivist grounded theory approach to the data, where I engage in free coding of themes, events, actions, attitudes
25 and phenomenon, in order to organize them into an understandable, descriptive form. Theory and theorizing in this case is interpretive, with the underlying assumptions that “emergent, multiple realities [exist, both within and without of the data]; [there is and will be] indeterminancy [in our findings]; facts and values are linked [and not necessarily due to cause and effect]; truth [is] provisional; and social life [is] processual” (Charmaz 2006:126) Herein, I employ a narrative analytic framework to assist with organizing and explaining outcomes. Outcomes that, according to Charmaz (2006) on the practice of theorizing, “can alter [our] viewpoint and change [our] consciousness. Through [which we] can see the world from a different vantage point and create new meanings of it” (128). It is through the resultant narrative commodity of my analysis that I expand on theoretical understandings of infertility as well as to generate theory on the social construction of infertility as a disability. 1.4.2. Narrative Analysis I employ narrative analysis for this project for organizational purposes but also because of the nature of narrative itself. Social scientists often refer to human beings as meaning making animals. According to the narrative paradigm as envisioned by Fisher (1984), and built on by a number of other contemporary researchers, among them Clair (2006), Dorries and Haller (2001) and Lawrence (1996), the way in which humans construct and understand those meanings is through story telling. Further, Fisher (1984) states that all human communication, whether individual narratives, newspaper accounts, legal briefs, or so on, are the stories we tell to help us understand life events and to make meaning of them—both individually and collectively. Narrative analysis, then, is a way in which to examine the three different sets of data utilizing one analytic framework.
26 While the context, structure and even content may differ, the assumption that they are all forms of narratives, or stories, will allow me to consider them as interactive components that contribute to the meta-story of the meanings of infertility and disability as a whole. In regarding all the data as narratives, or stories, I can not only “try to make sense of how things have come to pass and how our actions and the actions of others have helped shape our history” but also show how these stories, and their plotlines, point to an “anticipated future” (Mogensen, 1997:432 also in Polkinghorne 1988, Gubrium and Holstein 1997 and Murray 2000). In order to tease out these potential futures, we must “uncover the common themes and plots” that are found within the data (Polkinghorne 1988:177) in order to relate individual experiences to the social and cultural context within which they are founded and vice versa (Mogensen 1997; Gubrium and Holstein 1998; Murray 2000; Persson et al. 2003). 4 In so doing, a narrative framework allows these plots and themes to be re-organized for new understandings of actions, attitudes, events and phenomenon. The new understandings are revealed in the form of emergent storylines and propositions that fall into one, or more, elemental types of narratives (Polkinghorne 1988; Cresswell 2006). Of the diverse body of elemental types of narratives that exist, I focus on four types that are found throughout the social scientific literature on narrative analysis: chronological, plot based, spatial and thematic. In a chronological narrative, the story follows a series of epiphanies and events over a span of time. This elemental type is
4
Murray (2000) claims that this one of the principal arguments for using narrative analysis but also one of the greatest challenges for doing so.
27 useful for examining the context within which stories unfold and the impact that this context has on the development of future epiphanies and events. Plot based narratives are constructed through an explanation of the characters, settings, problems, actions and resolutions that occur within a storyline or proposition. Plot based narratives also provide context, as do chronological narratives, however context here has to do with the ‘characters’, which can be people as well as groups or organizations, and their demographic backgrounds and biographies. In addition, context is related through the setting in which the story takes place, whether it is in a living room, a doctor’s office, a board room or an online forum. Plot based narratives are useful for understanding interactive narratives, where problems, actions and resolutions don’t necessarily unfold in a linear fashion. Spatial narratives emphasize locations, which may or may not have a connection to a physical locale, situations, connections and interactions (Cresswell 2006). This narrative framework is valuable in analyzing issues of identity, whether individual, group or organizational, the social construction of mores and folkways, or the lived experience of embodiment. Thematic narratives are comprised of related topics that may be complimentary or contradictory to each other. These topics may be comprised of moral lessons, debate points on specific issues or providing fine details about specific events, actions, attitudes or phenomenon. All four of these types of narratives are useful for this study. Rather than using them as sensitizing concepts, however, I consider them as potential frameworks through which to analyze, understand and interpret the data. A narrative analytic approach provides a lens through which to examine the different levels of analysis regarding a research question or questions by allowing different types of stories to develop through that analysis. It also allows for
28 indeterminacy in how the stories conveyed unfold, how they may diverge and converge with each other, which qualities and characteristics remain salient across the levels of analysis, and, finally, to describe their characteristics and theorize on why these qualities remain important across the levels of analysis. 1.4.3. Integrative Framework In integrating these two approaches to analyzing data and conceptualizing theory, it is important to tease out the reciprocal nature of such a relationship. The conceptual model I have developed assists in understanding both the interactive nature of this relationship and provides a road map for using the approaches in tandem. In the first phase of this modeling process, I use narrative analysis as a platform from which to begin to engage the data as narratives that contain storylines and propositions within them. In phase two, the storylines and propositions within the data are deconstructed and free coded, in an emergent, inductive fashion within a grounded theory rubric. The codes develop into a series of new narratives that provide storylines and propositions for the data as a whole. 5 These new storylines and propositions require organization and, therefore, a return to narrative analysis is called for. In phase three, the storylines and propositions are re-examined and organized according to corresponding elemental type. This procedure provides structure for understanding and explaining the new narratives and, in turn, a basis from which to interpret the findings of the analysis and generate new theory and/or expand on existing theory in phase 4 (see Figure 2).
5
A full explanation of the coding and development process is outlined in Chapter 2.
29 The basis for the development of theory regarding infertility as a disability rests on an understanding of personal, organizational and institutional narratives concerning this topic. As previously stated, I utilize three sources of data in order to achieve this understanding. My research questions are constructed so that each set of data may be analyzed separately and as a whole, in order to discover the story, or stories, that emerge
Grounded Theory
M ethod for Analyzing Data
M ethod for Generating Theory
P4
P2a
P2b
Storylines and Propositions
Theoretical Framework for Understanding & Explaining Storylines & Propositions
M ethod for Treatment of Data
P1
P3a
P3b
Narrative Analysis
Figure 2.2 Integrative Framework
30 from the analysis. And from these stories, an explanatory theory, or metanarrative, of the social construction of disability will emerge. For this purpose of this study, a metanarrative is the overarching story that is organized and constructed from an underlying group of narratives into a coherent whole (Bruner & Kalmar 1998). My understanding of this definition is based on the notion that metanarratives are “narratives that go beyond the basic elements of narrative inquiry” through the researcher’s interpretation and “integration of historical, sociological, psychological cultural and contextual perspectives” (Irving 2004:30). The narratives in this study involve all of these perspectives and together they provide more than a vantage point from which to observe the process of constructing a social phenomenon. The meshing of the significant plot lines into a metanarrative provides a more comprehensive understanding of the obstacles that women face in many areas of reproduction and reproductive care—in obtaining access to treatments and the necessary time to pursue those treatments. It also brings to light the complex nature of this issue, its connection to lingering social inequalities via sex and gender, and the contradictions that emerge from attempting to address both. 1.5. Research Questions The research questions for this project act as sensitizing concepts for my analysis as well as an organizational tool for presenting my findings. The first three questions are as follows: 1) Is infertility discrediting? If so, how, and if not, why not? Is infertility discreditable? If so, how, and if not, why not? Can it be both? Can it be neither? In what ways do these two phenomena interact?
31 2) In what way is infertility perceived to be a disability or similar to a disability? Are there ways in which infertility is perceived to be unlike a disability altogether? 3) How does self-labeling as disabled affect women with infertility, personally, socially and culturally? Does an "infertile identity" interact with a "disabled identity"? Does it subsume an infertile identity? Do women with infertility who self-label as disabled differ from those who do not? If so, how and in what ways? 6 Each data set has its own substantive chapter in which I respond to each of these questions in full through an analysis of the data and an explanation of my interpretation of its renegotiated narrative (Chapters 3 through 5). In order to respond to the fourth research question, listed below, I engage all the data sets, their corresponding analyses and interpretations in an additional chapter (Chapter 6). 4) Does the analysis reveal an overarching story of infertility as a disability among the data? If so, what are they? If not, why not? At what points do the accounts converge or diverge? Also found in Chapter 6 are a discussion of the findings from each data set and interpretive conclusions regarding this project. It is in this final chapter that I engage in theorizing about the concept of infertility as a disability and hypothesize about its
6
The analysis of answers to this question would include differences in sociodemographic characteristics, type of group membership, import of group membership, and other contextual factors such as the impact that fertility problems has had on their relationships and their day-today lives.
32
ramifications for women who struggle with infertility. It is also here that the sociocultural metanarrative regarding infertility is reimagined, reframed and retold within the context of this project. 1.6. Significance of Research The results of this research project will add to the sociological literature as well as the literature on infertility itself in at least three ways. First, I investigate the phenomenon of infertility as a disability and not simply as an analogue to chronic illness or disability, as has been done in past research. Second, unlike other studies in this area, I link multiple discourses for my analysis: 1) open-ended, individual interviews with women regarding their attitudes and experiences of infertility; 2) advocacy group’s statements and claims regarding infertility and insurance coverage; and 3) legal scholars discussion of terming infertility a disability. Third, this project expands the sociological study of stigma, medicalization and disability, and the phenomenon of self-labeling. In addition to these contributions, this work affords the women interviewed the opportunity to share their stories. This can provide a positive, albeit sometimes painful, outlet for women who often feel they are suffering the effects of infertility alone, a type of therapeutic disclosure. It also provides them with a platform from which to educate a relatively uninformed public about the nature and experience of infertility, a type of preventive disclosure (Miall 1986; Greil 1991a; Whiteford & Gonzalez 1995; Letherby
33 1999; Loftus 2004; Sternke 2005). 7 This is of concern for this study as the outcomes of pending judicial rulings and legislation regarding infertility treatments will affect women’s everyday lives, and it is important, therefore, for the public to understand the possible effects of these policies in advance of their institution. Additionally, it is my hope that my research, like Greil’s, Loftus’s, McQuillian’s, Sandelowski’s, and others, will help further the understanding that research on infertility in particular, and the Sociology of Reproduction in general, are central to understanding the underlying values of society and how those values are translated into social policy.
7
One of the main reasons women in all of these studies cite for sharing their infertility stories with others was in order to educate them about the experience of infertility. Miall (1986) refers to this as “preventive disclosure,” a way in which to attempt to cope, or regain control, over an often uncontrollable situation.
34
CHAPTER 2. METHODS AND DATA 2.1. Methods As laid out in Chapter 1, I use an integrative methodological and theoretical framework for this project. Constructivist grounded theory and narrative analysis are employed in a holistic modeling process. In employing a grounded theory perspective, it is important to develop sensitizing concepts as well to reflect on how and why these concepts are being used. When analyzing the data I employed the sensitizing concepts described below, as well as my research questions, to begin the coding process. In the second phase of the analysis, I examined themes found within these codes and teased out those that seemed significant for this project. In the third phase, I refined the code sets and considered them in the context of the story of infertility as a disability. This was accomplished through the use of narrative analysis as a platform from which to begin to engage the data as narratives that contain storylines and propositions, the importance of which I discuss in detail on Chapter 1 (see section 1.4.3 Integrative Framework). Further, I employed situational analysis as a visual mapping technique to help me clarify my analytic decision making and interpretation development. In the following sections I first provide an overview of my place in the research and the development of the sensitizing concepts for this project. I detail my methodological practices including describing my coding and analysis procedures, data collection process and I detail the make-up, and import, of the data.
35 2.1.1. Self-Reflexivity and Sensitizing Concepts The research that I conducted here is based on ideas developed during an analysis for a conference paper that furthered my previous work on women, infertility and embodiment (see Sternke 2005). As I conducted this analysis, I discovered that women often explained their experiences of infertility in conjunction with how they experienced their bodies. Many of the ways in which they described their bodies, their experiences and their relationships not only mirrored the experiences of women from other studies conducted on infertility but also the experiences of individuals with various types of disabilities. I knew that this was an important finding as infertility authorities have often discussed how infertility is like a disability but is not a disability in and of itself (Sandelowski, 1990; Greil, 1991a; Greil, 1991b; Whiteford, 1995; McQuillan, 2003; Loftus, 2004). Several of these same researchers also talked about the hidden, or invisible, stigma which women with infertility experienced. Arthur Greil (1991a) in particular, though, claimed that he didn’t understand why women felt stigmatized so deeply as infertility is not a condition that is physically observable. The question of how these researchers came to their conclusions perplexed me. From reading the accounts of women with infertility it seemed clear, at least to me, that infertility was not a condition that was hidden or invisible at all. In fact, it seemed as though these women felt as though they, and their fertility status, were under constant surveillance. As I reviewed more literature for the conference project I happened across case law on a developing legal trend—that of women with infertility suing employers and health care providers for insurance coverage of their fertility treatments. As I examined several of these cases, I found that a few judges dismissed out of hand plaintiff’s claims
36 that infertility was a disability. These judges disagreed that the claim that infertility was a limitation of major life activities as defined by the ADA and therefore did not meet the threshold for coverage under the act. However, in other cases, judges considered the claim legitimate, stating that infertility was indeed a limiting factor and these cases went forward. 8 While cases are always based on existing legislation and extant case law, they are also the basis from which new understandings of the law are constructed and new precedents are founded. These cases provided me with the opportunity to consider not only how individual women felt about their own infertility experiences but also how these experiences were understood within a larger social context. They also provided me with the chance to examine if or how these understandings might affect our definition of infertility itself. Additionally, I realized that there was an opportunity for further investigation into the connections between the infertility experience and stigma by making a direct correlation between disability and embodied identity. As I reflected further on the choice of this topic, I also considered how and why my background and life experiences might help or hinder the goals that was envisioning
8
Examples drawn from the following cases: Mary Jo Krauel, Appellant, V. Iowa Methodist Medical Center, Appellee. Equal Employment Advisory Council, Amicus Curiae. No. 95-3768 United States Court of Appeals for the Eighth Circuit (1996); Anita Bielicki, And All Others Similarly Situated, Plaintiff, V City of Chicago, Defendant. No. 97 C 1471 United States District Court for the Northern District of Illinois, Eastern Division (1997); Charles And Gina Niemeier, Plaintiffs, V. Tri-State Fire Protection District, And James Eggert, Defendants. No. 99 C 7391 United States District Court for the Northern District of Illinois, Eastern Division (2000). Andrew K. Knight, Plaintiff And Appellant, V. Hayward Unified School District, Defendant And Respondent. A106449 Court of Appeal of California, First Appellate District, Division Two (2005).
37 for this research project. My standpoint as a white, middle-class, educated, experienced mother puts me in many of the same categories as most women who have participated in a number of studies on women who have experienced infertility. Women who have participated in these studies tend to be white, middle-class and are well educated, usually having attended at least some college or completed a bachelor’s degree. One hypothesis for the homogeneity of these is that an important way to find women to participate in studies is to find women who are currently seeking fertility treatments-in other words through advertising for respondents in the clinical setting. This is thought to produced samples inherent with class, racial and ethnic biases based on access to financial and other resources. An initial visit to an OB/GYN or Reproductive Endocrinologist, is very costly. An initial visit without any testing can run hundreds of dollars and with testing into the thousands. These fees, as with most tests and treatments for infertility, are not often covered by insurance. In addition, tests and treatments are often time consuming, at times daily, events that sometimes require travel away from home lasting from a few days to several weeks. Required, then, besides a high enough income level (and/or credit rating) to afford visits, tests, and treatments, women must also have a schedule over which they can exert control to some extent without worry about undue negative recourse from employers. Finally, women who seek fertility treatments reportedly often have high levels of education. There are several factors to consider when questioning the homogeneity of clinical samples. First, white, middle-class women tend to have higher levels of education overall compared to the general population. 9 Second, because of their
9
As is true regarding the middle-class population overall including men and women.
38 higher levels of education, it is speculated that women seek fertility treatment because they are both more familiar with the health care system due to more frequent, positive interactions through such things as regular, preventive care, as well as feeling more competent in asking questions of health care providers that could lead to fertility treatments. Therefore, it is possible that these types of women are recruited because they can afford the time and money required for treatment and also have the skills with which to maneuver through the health care system to arrive at a clinical specialist’s office. Further, acquiring education and financial resources takes time—a fact which may be reflected in the older age for first birth seen in the infertility literature. One way in which my experience mirrors those women who seek fertility treatments is that I was an “older” first-time mother. My first child was born when I was twenty-nine. According to the January 2009 National Vital Statistics Report (57:7), the average age of first birth has increased over the past thirty years with an average age of 25 for first birth in 2006. Childbearing for women past the age of 29 is still considered problematic and especially so for women after the age of 35. Regardless, birth rates, particularly first births, for women in those age groups have also increased over this time period. One of the experiences that women past the average age of first birth report over and over in the literature is that people want to know, all the time, regardless of their relationship to them, when they are going to have children and why they don’t have children yet. I was married nearly nine years before my first child was born. The first seven were spent fending questions regarding our lack of children and when I would become pregnant. This was true for both close and distant relatives, friends and acquaintances, co-workers and bosses. Family and friends finally did stop asking around year seven. At a party I
39 hosted for our family business very near my due date, a number of people commented that they came solely to see me while I was pregnant. They were very excited for us— they assumed that since we hadn’t had children sooner we had experienced some kind of fertility problems. They were shocked to find out that this was not the case. And, interestingly, the day after I gave birth to my first child, the questions began again! When will you have another one?! 10 My second child was born after I was well into my thirty-fifth year. It was much more difficult to become pregnant and to stay pregnant at this point in my life. When I finally became pregnant again at age thirty-three I experienced a miscarriage that I found particularly devastating. It was even more difficult to become pregnant again and, because of my age, there were additional tests every month that heightened my feelings of anxiety regarding both the baby’s and my own health. I don’t doubt that this is one of the main reasons that I developed a severe case of post-partum depression that ironically, because of the all the attention to my health before the birth, went undiagnosed for nearly six months. Before my daughter’s second birthday I found myself in the midst of a divorce. One of the main reasons that my now ex-husband cited for wanting a divorce was my ongoing struggle with my depression and depressive symptoms. A number of studies on women with infertility address the psychological distress that accompanies their struggles to become biological mothers. The amount of and type of stress placed on the marriage relationship is also noted as a key issue in these studies.
10
While I did end up having another child, the questions only stopped when I became divorced.
40 Regardless of these experiences, I don’t feel that I can say that I have had the same experiences as women seeking fertility treatments. For the most part, I took for granted control of my fertility and my fertility was never medically questioned. When I did not become pregnant again after my miscarriage I put a limit on the amount of time that I was willing to try to get pregnant again but my doctor did not. She felt that I would become pregnant again without any difficulty. When the window closed, I thought, I would make the choice to remain the parent of a singleton. My husband agreed with my thoughts and feelings on this matter so I did not feel any pressure from him to continue trying until I did become pregnant. We lived so far away from the family members who had so pressured us about having children that we really didn’t need to consider their comments too often. Since I became pregnant and had a second child, though, these considerations were moot. Interestingly, my desire to have more children intensified after I had my second child. I sometimes wonder if this feeling is comparable with what women in the studies I have read talk about – an inexplicable, driving force to become a mother. I have been without a partner now for nearly ten years and, until very recently, have never stopped wanting to be able to bear and raise another child. Even though I have reached the stage where this was not a decision but a fact of life, due to my age and my other life circumstances, it is still very painful to actually sit here and put these words on the page. Having and raising my girls has been the most difficult and challenging thing that I have ever done in my life and also the most rewarding. And rewarding in very unexpected ways. As a married mother of two, I typified the working, suburban housewife. My goal was to support my family and make sure their goals were achievable. This was an
41
interesting position for me as I had never longed for children or a family. In fact, as a young woman I thought that I never wanted to have children at all. In contrast, becoming a divorced, single working mother of two has allowed me to grow into a person not only capable of taking care of her family but also of achieving goals that would probably never even have been set in my prior, married life. Further, my entire post-divorce life has been spent as a student. I returned to school soon after my husband left and have earned multiple degrees over the past twelve years. I believe that this juxtaposition of desires, goals and experiences puts me in a somewhat unique position to consider questions concerning motherhood. While they did not lead me to this area of research they certainly put me in a position that helps me relate to these women and their experiences. I recognize, though, that I do hold what is considered a privileged position when conducting this particular study. I am a white, educated mother—more importantly, a mother of two. This allows me differential entrée into any number of situations, contacts, and relationships. The principle that I clung to when conducting my research was to find ways in which these characteristics bias my interactions with both the women I interview, in particular, and the data and my interpretation of it, in general, as little as possible. Additionally, I also understand that no matter how much I feel I share similar experiences with these women, my experience is not the same as their experience. While I feel my experiences and my interpretation of them provide me with a unique way in which to connect with the women in my study they may not feel the same way. I must remind myself that neither set of privileges makes me the “expert” while conducting this research
42 but, rather, a collaborator in developing an understanding of what it means to struggle with fertility in the context of disability and self-labeling. The collaborative process in which I engaged may not be evident in the ways in which I report my findings but is an important part of the way in which I conducted my data collection The interview process, as I approached it with each respondent, was structured as a conversation and not simply a question and answer session. I did not read questions from an interview schedule but rather allowed responses to occur spontaneously as often as possible with the respondent telling me their story while I reflected on their thoughts and, at times, redirected the conversation so that we would engage with my primary research questions at some point during our time together. The advocacy and support group data itself is collaborative data as the mission of the groups and the collective action in which they engage are constructed in collaboration with the group members. Further, the law review articles are also a collaborative source of data as legal scholars engage with substantive topics, the law and each other within the pages of legal journals. Further, each source of data is reliant on the others as individual experiences and understandings shape all three. 2.1.2. Coding and Analysis Procedures In order to discover if these concepts were salient and, if so, how they were imagined, I felt it necessary to follow an inductive coding process. In such a process, a researcher approaches their data without preconceived ideas about categories or their properties that exist within it. This does not mean that we, as analysts, go into this process blindly, without thought to what we are hoping to find within the data. Rather, in an inductive, or open, coding process we use guiding interests and sensitizing concepts to
43 assist in discovering information pertinent to the project at hand within the data (Strauss & Corbin 1998; Charmaz 2006). Along the way, we may find that there are other important concepts that require attention. These concepts may be tied in to the current research or may provide entrée into another area of interest altogether. In examining the interview transcripts, website information and law review articles, I began this broad coding process using my research questions as a guide. This process is quite intense and detailed. It requires an examination of each piece of data line by line, which is read and reread, in order to ascertain the phenomena that are represented within that data. Once a set of concepts is clarified, it is possible to return to the data in order to make determinations regarding the “events, happenings, objects, and actions/interactions that are found to be conceptually similar in nature or related in meaning” (Strauss & Corbin 1998:102) . The categories that emerge from this second reading of the data are then further broken down into subcategories by reexamining the details within categories and determining similarities and differences between them. Subcategories provide the finer details of categories, the “when, where, why, and how” categories exist (Strauss & Corbin 1998:114). The process of relating categories to their subcategories is referred to as axial coding. Open coding provides a sense of what is conceptually important within the data while axial coding provides the context for those concepts, whether they are situations/circumstances, actions/interactions or consequences/effects. In this way, researchers can examine the data in a dynamic fashion where the researcher can find, relate and discuss the important concepts found in the data as well as if or how these concepts relate to one another. Finally, through selective coding it is possible to refine, or integrate, categories into central explanatory
44
concepts, or categories, for the data used for the research project (Strauss & Corbin 1998). This central concept can be used to elaborate on or test extant general theories in addition to provide the context for examining, understanding and making predictions from the data (Strauss & Corbin 1998). Making predictions means taking a positivist approach to the data, however, and I do not assert that my analysis of the data will provide them. However, I do employ the notion of central concepts in order to examine whether or not there are congruent themes among the data regarding the social construction of infertility as a disability The goal of outlining the levels of concern of the social processes being studied is assisted in grounded theory methodology by visual modeling. In traditional grounded theory methods, the visual model is the conditional matrix. The matrix is formed through mapping levels of concern and categories in concentric circles. The proximal circles represent local, or individual, concerns and the distal circles represent global, or institutional, concerns (Strauss & Corbin 1998). This can be a useful way in which to visually capture the social events or processes found within the data and it allows the researcher to visualize the context within which events or processes occur and how they may interact (see Figure 2). However, in this formulation, conditional matrices do not allow for multiple paths of explanation and “may force moving…data and analysis in a pre-established direction” (Charmaz 2006:118). These models, as originally developed and utilized, are again more positivist in nature. This is because events and consequences are mapped in cause and effect patterns that assume a chronological, linear relationship exists between them (see Figure 2).
45 While I find the concept of visual modeling useful, as with my approach to grounded theory, I also take a more constructivist approach to visually modeling my data. Situational analysis (Clark 2003) allows a researcher to incorporate the concepts of levels of analysis, themes, relationships, and interactions within and among data. In Chapter 1, I noted that I am interested in determining how the personal troubles associated with infertility become public issues and, further, what that process produces that can be understood within the frame of the social construction of disability. A conditional matrix would have provided me with a model that would account for a range of levels, from
Institutional
Individual Event
Consequence
Figure 2.1 Conditional Matrix the personal/individual to the public/institutional, but would not have helped me account for the processes involved in moving from one level to another in any but a linear fashion. Nor would it would have allowed me to explore how those interactions
46 construct notions of disability both within my data sets and among them. For these reasons, I invoked Clarke’s (2003) notions of multiple mapping of the findings. There are three types of mapping involved in situation analyses: situational, social worlds and arenas, and positional. In addition, variable sub-maps may be modeled to provide room for a more complex analysis within any of these mapping types. In situational maps, the major elements of the research project are examined. According to Clarke (2003:561), “the situational map should include all analytically pertinent human and nonhuman, material and symbolic/discursive elements of a particular situation as framed by those in it and by the analyst” (emphasis original). The situational map was useful for this project in that I employed it for analyzing the narratives within and among the data. The elements that comprise a social worlds/arena maps are the “collective actors, key nonhuman elements, and the arenas of commitment within which they are engaged in ongoing negotiations” (Clarke (2003:554). It is through this type of mapping that the researcher can observe the emergence of the primary relationships, interactions, and processes found within the data. It also enabled me to visualize spatial narratives involving notions of identity and social norms. Positional maps “lay out the major positions taken, and not taken, in the data vis-à-vis particular discursive axes of variation and difference, concern and controversy surrounding complicated issues in the situation” (Clarke (2003:554). Positional maps are helpful in examining thematic narratives. As discussed in Chapter 1, thematic narrative topics may be comprised of moral lessons, debate points on specific issues or providing fine details about specific events, actions, attitudes or phenomenon. This type of mapping is especially important in addressing the metanarrative of infertility as a disability. For these reasons, I find that variety, subtlety
47 and flexibility of mapping that situational analysis provides aligns more closely with the constructivist grounded theory than does the conditional matrix. Therefore, I employed this approach, and used situational maps to assist me in interpreting my findings and organizing them into meaningful results. 2.2. Data I developed three sets of data to examine the concept of infertility as a disability across three levels of analysis. The first set of data is comprised of in-depth, personal interviews with individual women who have sought or are seeking infertility treatment. The women interviewed for the project were contacted through local peer support groups set-up under the auspices of the national organization whose website is also used as a data source. These interviews provided a rich source of in-depth narrative pertaining to what individual women think about their own fertility struggles as well as the prospect of a legal change in the definition of infertility. Just as importantly, they help illuminate how self-labeling as disabled may affect them personally. The second set of data is comprised of information from a national advocacy/support group website aimed at coalescing legal, educational, and social support for women, and couples, who suffer from infertility. The third set of data is comprised of law review articles concerning the social construction of infertility as well as disability. The analysis of these data provides a basis from which to understand how and why infertility as a disability is being constructed within the U.S. legal system. These articles are a vital source to this project as it is through law review articles that legal scholars discuss the attributes of particular cases as well as their import for society at large. In this way, the law review data provide the aggregate story of individual experiences of infertility as well as disability. These data
48 allow us to examine how these collective experiences are used in institutional discourse and, as such, these articles serve as narratives at the institutional level of analysis. 2.2.1. Individual Interviews 2.2.1.1. Purpose The in-depth interviews are vital to this project, not only as a rich source of data concerning the lived experiences of women with infertility, but also because it is individuals who often bring the experience of disability or chronic illness to the public’s attention. This is through both personal contact and communication with others in their day-to-day lives, through group activities, such as belonging to a support or advocacy group that promotes understanding of the infertility experience and who generate public support for their members, and also as claims makers in courts of law. The narratives that the respondents and I construct together concerning allow us to understand how these women’s lived experiences contribute to the construction of their own identities but also how they utilize cultural and social values to construct their identities as well. 2.2.1.2. Sampling RESOLVE and NINE both have regional and local chapters that hold regular support-group meetings. I hoped to gain access to respondents for in-depth interviews through these local and regional memberships, through promoting this project at their inperson meetings or via their websites and list-serves. As noted in the next section on group sampling (2.2.2.2 Advocacy/Support Group Websites: Sampling), I was unable to contact NINE administrators and there were no online, telephone or post address channels through which to contact group members. Therefore, the sample for the interviews is composed only of women contacted through RESOLVE support groups.
49
As I am located in central Indiana, and my resources are limited, it made sense for me to interview respondents that were within relatively easy driving distance. Therefore, I contacted RESOLVE support group leaders in a number of Mid-Western cities in order to gain access to potential respondents. The closest group I contacted was within 70 miles of my home and the furthest was 626 miles away. Group leaders were e-mailed an outreach letter and a letter was sent to the regional office of RESOLVE (see Appendix 1). I heard back from six support group leaders and interviewed respondents from a total of five groups—two of which were located in the same city. Upon receiving responses for contact via phone or e-mail, I followed up with the leaders and requested direct contact with meeting groups in addition to requesting that announcements be made at meetings, that flyers be posted at meeting sites, and that an announcement be allowed to be posted on local website and meeting boards (see Appendix 2 & 3). After potential respondents contacted me and we made an initial agreement that they would like to be part of my study, I set up appointments for in-depth interviews in their home cities. Approximately two weeks before the interview was scheduled to take place I sent an informed consent form, a confirmation letter and a questionnaire to the respondent along with a selfaddressed stamped envelope (See Appendix 4, 5 & 6; Complete Interview Schedule, see Appendix 7). This questionnaire was employed as part of the interviewing process to enhance the research design in a number of ways. First, I used the survey as a commitment strategy: it helped me cement the commitment the respondent made to be interviewed (Cialdini 1993). Second, the information from the questionnaire provided me with important preliminary information about each respondent. This information was
50 useful in developing rapport and helping the respondent feel more comfortable. In addition, the questionnaire data provided the basic demographics necessary for examining diversity within my sample. Finally, the data collected can be used for small N quantitative data analysis in future research. 11 I attempted to interview at least five women from each city in order to collect a total of at least thirty interviews. However, at the close of interviewing I had interviewed twenty-four women with one interview being dropped from the sample due to the inability to retrieve the taped interview and the inability to reschedule the interview. Nonetheless, this is still a suitable sample size for this study as it is provides a large enough number of interviews from which to determine if there are any consistent and recurrent patterns in this data and it is small enough that I will be able to obtain a deep understanding of the each individual woman’s experiences (Kvale 1996). Interview length ranged from sixty to one hundred and fifty minutes and the average interview length was one hundred minutes. The women whom I interviewed were predominately white, very educated and financially well-off (see Table 2.1). All of them had health insurance coverage. The majority of them belonged to either a non-denominational Christian or Catholic Church. Many of them talked about the importance of religion and religious beliefs in their lives. The one disappointment that I have regarding my interview data is the lack of diversity among the women who participated. In particular, women of color and of lower 11
For example, testing significance levels in using the Fisher’s Exact Test.
51 socioeconomic classes did not respond to my call for interview participants. Other researchers in this area of study have had similar respondent pools—especially researchers who seek respondents within a clinical setting. In contrast to the respondent pools represented in these studies, the infertility rate for white women is much lower than for women of color. In a recent study regarding infertility rates among women in the U.S., Bitler and Schmidt (2006) used pooled data from the National Survey of Family Growth (NSFG) to discover that infertility rates for Black and Hispanic women (12% and 10% respectively) were significantly higher than those for non-Hispanic White women (6.9%). However, the majority of women who seek treatment are white. “Non-Hispanic White women were most likely to report ever seeking medical help to get pregnant (10.7 percent) compared to other racial and ethnic groups; non-Hispanic Black women were least likely (4.7 percent) to seek medical help” (Women’s Health USA 2005). Due to the difficulty in obtaining a diverse sample within the clinical setting, I made a conscious decision to utilize the internet via the advocacy and support groups to make my interview contacts. Previous researchers’ have had successful experiences of using websites to construct a more diverse sample (Hamilton and Bowers 2006; Hamilton, Bowers,& Williams 2005; Wallace, 1999; Murray & Sixsmith 1998; Smith & Leigh 1997;). Hamilton and Bowers suggest that finding the most appropriate hub or hubs is crucial to optimizing, “the chance of recruiting individuals interested in that specific research question” and state that “A common strategy for Internet recruiting involve posting…on an Internet support group site which is visited by individuals for whom the study is designed (2006:825). I attribute the fact that I was unable to find this diversity for my study to a number of different factors including the way in which I used
52 the internet in order to recruit participants for my project. In purposefully sampling from infertility support and advocacy group membership and allowing group leaders to determine whether or not respondents would receive information about the interview opportunity rather than making open postings on infertility bulletin boards I may have missed the opportunity to speak with a wider range of women with fertility problems. In future research, I will need to reconsider my approach to recruitment in order to overcome this limitation. Table 2.1 Descriptive Statistics for Respondents Variable Name Age Educ
MaritalStat
Description Converted from Year Born How many years of education do you have?
Which of the following bests describes your marital status?
Metric 26 - 40 1 Less than 12th grade 2 Through 12th grade, did not graduate from HS 3 Graduated from HS or received GED 4 Technical or vocational training 5 Some college, no degree 6 Associates degree 7 Bachelors degree 8 Graduate or Professional degree 1 Single, never married 2 Cohabitating with a partner but not married 3 Married 4 Separated 5 Divorced 6 Widowed
Freq % N/A
Mean/ Mode 33.14
---
8.00
----4.3 8.7 8.7 8.7 69.6 ----100 -------
3.00
SD 3.655
53 RaceEthn
RelAffil
HouseInc
I regard my racial or ethnic background as mainly:
I currently consider myself to be associated with the following religion:
What was the Total Household Income from all sources…before taxes last year?
1 American Indian or Alaskan Native 2 Asian or Asian American 3 Black or African American 4 Hispanic or Latino 5 Native Hawaiian or other Pacific Islander 6 White/Caucasian 7 Bi-racial 8 Multi-racial 9 Other 1 Agnostic 2 Atheist or no religious beliefs 3 Buddhist 4 Catholic 5 Hindu 6 Jewish 7 Muslim 8 Orthodox Christian 9 Protestant or Nondenominational Christian 10 Unitarian Universalist 11 Other 1 Less than $10,000 2 $10,000 to $19,999 3 $20,000 to $39,999 4 $40,000 to $49,999 5 $50,000 to $59,999 6 $60,000 to $69,999 7 $70,000 to $79,999 8 $80,000 to $89,999 9 $90,000 to $99,999 10 $100,000 or more 11 Other
---
6.00
4.3 8.7 ----87.0 ---------
4.00
8.7 --43.5 --------34.8 ------------8.7 4.3 8.7 21.7 8.7 47.8 ---
10.00
54 HealthIns
Location
EverPreg NumbPreg
EverBirth
N = 23
Are you currently covered by health insurance or some other kind of health care plan?
Location of Resolve group through which contact was made Have you ever been pregnant? If you have been pregnant in the past, how many times have you been pregnant?
Have you ever borne any children?
1 Yes, through employer 2 Yes, through partner or spouse's employer 3 Yes, I purchase an independent healthcare insurance plan 4 Yes, through a government program 5 No, I do not currently have a health insurance plan Site 1 Site 2 (2 groups) Site 3 Site 4 1 Yes 2 No 0 1 2 3 4 5 6 7 8 9 1 Yes 2 No
52.2
1.00
43.5 ------26.1 34.8 13.0 26.1 56.5 43.5 40.9 31.8 4.5 13.6 4.5 ----4.5 ----26.1 73.9
2.00
1.00 1.32
1.756
2.00
2.2.2. Advocacy/Support Group Websites 2.2.2.1. Purpose This source is important to this study for several reasons. First, the advocacy and support groups provide a community of like-experienced women. They provide a space where having difficulties with fertility is not something unique or extraordinary but a
55 daily, lived experience shared by numerous others. As discussed in the literature, separation from others, in myriad forms, is a common experience for these women. Support and advocacy groups supply a new source for relationships and a “safe space” in which women can feel more normal, find support and learn to traverse the “outside” world. Here, women can also find out about treatments, doctors and clinics. In addition, they provide a platform from which their lived experiences can be expressed as a group and from which these expressions gain rhetorical and political power. Therefore, the information on the group websites is inscribed with individuals’ experiences and beliefs. The sites, and the development of their content, emerge from the stories that these women create together in effort to understand their own experience, educate others (which includes the legal community as well as intimates, families and friends) about this experience, and, in so doing, gain empowerment for themselves and for their group. In this way, groups can act as a proxy for them in order to affect change in the way that infertility is legally labeled. 2.2.2.2. Sampling There are two national organizations that offer support of and advocacy for women with infertility: RESOLVE (Resolve: The National Infertility Association) and NINE (National Infertility Network Exchange). The websites for RESOLVE and NINE state that they work toward positive change in legislation for insurance coverage of fertility treatments. The RESOLVE website is much more technologically sophisticated than the NINE site and also has many free, on-line resources. The site also gives the impression that the members of RESOLVE are education oriented and politically active. However, no member data is available on the site or as part of their annual reports.
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The evidence for this is seen on the homepage, where a photo slideshow pops up at the top of the page with caption links entitled Learn, where information concerning infertility diagnoses, treatment and resources is housed, Cope, which consists of both “how-to-cope” documents and support group information, and Take Action, where members and visitors can view current RESOLVE actions surrounding social and legislative actions regarding infertility. The Quick Links area provides access to on-line bulletin boards, an infertility “quiz,” insurance information, clinical trial resource center, information on finding a local chapter and more. Another highlight of the homepage is a News section where the newest information on fertility drugs, national surveys, and other healthcare news is showcased (RESOLVE 2007). Interested individuals may also receive free e-mail updates on fertility news as well as action alerts. A yearly membership fee of $55 is required to attend local support group meetings and educational workshops and to receive the RESOLVE ‘signature’ publication, Family Building magazine. The NINE site, in contrast, is simple and straightforward. The homepage has a simple graphic, the name of the organization, and its motto: “YOU ARE NOT ALONE AND YOU DON’T HAVE TO BE” (NINE 2007). There are very few links on any of the pages. The important links on the homepage include services available, upcoming events, membership information, resource links and information about the organization. There is no free, on-line access to any of NINE’s resources except for the external links which gives the impression that NINE is an organization of a more private nature. (A free list-serve is advertised but when I attempted to join my e-mail was returned.) A membership is $40 per year provides access to all of the NINE services, including their
57 bi-monthly newsletter, participation in support groups, and use of their resource materials and referral services. Again, the NINE site does not publish membership data. My intent was to examine both organizations’ sites along with their official policy statements, either from their websites and/or via correspondence with their leadership, regarding legislative pushes on which the organizations and its members were currently working. I felt that including both the sites and respondents from the separate organizations would enhance the diversity of both the group and individual data sets. I found this potential especially appealing as I received different impressions from each site: that the RESOLVE organization seemed geared toward women who were educationally and politically oriented while the NINE organization appeared to be structured to appeal to women seeking personal support in a more private setting. However, despite numerous attempts to communicate with NINE’s administrators, I was not successful. Therefore, all of the website data is from RESOLVE. It is important to note is that I did not utilize any individual postings from list-serves or membership weblogs or bulletin boards for this project. I analyzed thirty-six separate documents from the RESOLVE site downloaded from the Learn, Cope, Take Action and News sections of the site. Of these, twenty-three yielded analytic results. I cataloged them into three categories: initiatives, insurance coverage and legislation and substantive concerns (see Table 2.2). Initiatives are narrative constructions concerning actions that RESOLVE is taking, or asking its members to take, on issues regarding infertility and family building. For example, in the article Vital Research, one of RESOLVE’s initiatives is a position statement on the organizations endorsement of “the highest possible allocation of federal dollars and strong, sustained
58 resources for health programs” and, in particular, funding for “basic biomedical research” through the National Institutes of Health. Insurance coverage and legislation documents are reports that include general information as well as specific regulations and legislation that could affect ART and access to treatments being considered on both the state and federal levels. One example from this second set of documents explains research findings that indicate states with mandated insurance coverage for in vitro fertilization have a lower number of high-order birth rates per implantation than states with no insurance mandates (Impact of Mandated Insurance Coverage). Substantive concerns include documents that include reports on and claims regarding topics such as the regulation of ART and embryo donation. In an online substantive statement, the organization states that: “RESOLVE supports a couple's right to choose what to do with their remaining frozen embryos -- keep them for a future attempt at conception, donate them to another infertile couple, donate them to research or destroy them. It is critical not to cloud this issue of embryo donation with issues of conception. We must hold reproductive biology as a separate topic” (RESOLVE Embryo Donation last accessed November 22, 2009). I also collected data from links to outside sources, for example, links to state legislative websites, but that data is not represented in the analysis but may be employed at a future date. Table 2.2 Descriptive Statistics for RESOLVE website data Page Type Initiatives Substantive Concerns Insurance Coverage and Legislation Total
Frequency 11 6 6 23
Percentage 47.8 26.1 26.1 100.0
59 2.2.3. Law Review Articles 2.2.3.1. Purpose The law review articles are important for a number of reasons. First, they provide accounts of how the ADA of 1990 has been interpreted in the past as applicable not only to disability in general but also to infertility in particular. This information provides a foundation for understanding what is currently happening in legislatures and courtrooms concerning infertility. Second, and at least equally as important, the law review articles act as a narrative for the legal community. Law review articles are usually singly authored and can, therefore, be viewed as the authors story of how they understand a problem as well as how they interpret the meaning and appropriate application of law and legal precedents. These articles can be viewed as narratives because they are the stories that legal scholars share with each other—their own interpretive narratives of why and how disability law should be applied in the case of infertility. In relating information about cases and tying them to institutional definitions of disability, these articles link back to the individual and the group level. Through this process legal scholars construct new institutional definitions that may affect future legislation and case law. 2.2.3.2. Sampling Law review articles for this project were collected using the LexisNexis database and encompass articles published between January 1, 2000 through December 31, 2007. I chose these dates because the initial cases using the ADA as a foundation for claiming infertility as a disability began in the mid-1990s and the trend of this type of claim was developing for infertility and other ailments was growing into the late 1990s and into the early part of the 2000s. I felt a search beginning too early would yield limited narrative
60 dialogue between scholars with only single voices emerging on this topic. Therefore I set my initial collection date for the beginning date of January 1, 2000. I set the ending collection date at December 31, 2007 as I was then heading into the field to begin the interview recruitment process. I felt that any work that had been published up to that point had potential to influence the organizational and individual responses to this phenomenon and I chose to bracket off my data collection based on this assumption. I used a Boolean search and looked for articles containing the terms infertility AND discrimination AND disability, which hit upon 493 items (see Table 2.3 for a breakdown of articles by year). Like the interview data, I felt that a large sample of law review articles was not required in order to understand the sociolegal context of these concepts. Therefore, limiting their numbers made analytical and practical sense (Riessman 1995). Further, I felt that by constructing an effective sampling scheme I would be able to find and analyze the articles that had the closet ties with the topic at hand. Consequently, I engaged in a three-tiered sampling scheme. First, I categorized the articles according to types using the information provided by the Lexis Nexis search engine. I collapsed the categories into the following types: 1) Articles and essays; 2) Notes and briefs; 3) Comments; 4) Regular features; 5) Annual reviews and compendiums; 6) Symposiums and proceedings; 7) Student papers; 8) Book chapters, and; 9) Book reviews. In this initial phase of the coding I added two additional categories, one for articles that were not specified by type on the data base (10) and another for duplicate items (11)(see Table 2.4 for frequencies). After completing the initial coding, I returned to the unspecified items and determined from reading their
61 abstracts which category to place the item within. I dropped the duplicate items and, further, dropped the two items that appeared in the data from 1999. Table 2.3 Frequency Distribution by Year for Initial Sample of Law Review Articles Year 1999 2000 2001 2002 2003 2004 2005 2006 2007 Total
Frequency 2 68 52 69 60 64 75 56 47 493
Percent 0.4 13.8 10.5 14.0 12.2 13.0 15.2 11.4 9.5 100.0
Table 2.4 Frequency Distribution by by Type of Article for Initial Sample of Law Review Articles Type # 1 2 3 4 5 6 7 8 9 10 11
Type of Article Frequency Percent Article/Essay 248 50.3 Note/Brief 78 15.8 Comment 44 8.9 Regular Feature 1 0.2 Annual Reviews/Compendiums 28 5.7 Symposium/Proceeding 45 9.1 Student Papers 7 1.4 Book Chapters 4 0.8 Book Review 12 2.4 Not Specified 22 4.5 Duplicates 4 0.8 Total 493 100.0 Second, I reviewed the types of articles included in the initial sample and further
analyzed what types of work were represented within them. In examining the types and
62 reading some of the documents within each one, I decided that the items most pertinent for this study were the articles and essays, notes and briefs, and the comments. The articles and essays are comprised of in-depth reports and analyses on very specific topics composed by single authors. Notes and briefs are usually short updates on legislation and case law and may or may not be associated with specific authors. Comments are generally first person opinion pieces also by single authors. These items were the ones in which legal scholars were engaging each other in legal and intellectual discussions regarding definitions, issues and rulings. In order to further reduce the sample size, I read through each of the item titles to discover whether or not they were clearly tied to my areas of interest. During this step I excluded articles from the sample that focused on stem cells and stem cell research, cloning, embryo and fetal rights, parental rights, adoption and adoption rights, and gay and lesbian rights. Additional articles that were excluded regarded female genital mutilation, children’s rights, intersexed children and adults, surrogacy, articles on tort reform, particularly those about caps on damage reparations, family law and items whose focus was religion and the religious ramifications of reproductive technologies. There were fifty-six items whose focus I was unable to identify from the item title. I returned to the Lexis Nexis database to review the summaries of these items in order to make judgments concerning their exclusion from the sample. In conducting this level of the sampling I found that there were several articles regarding HIV/AIDS, cancer and mental health conditions as disabilities. I made the conscious choice to keep these articles in the study as I felt that they would provide vital insight into how legal scholars constructed definitions of disability. In this way, I was able to reduce my sample to 105 items (see Tables 2.5 and 2.6).
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Table 2.5 Frequency Distribution by Year for Reduced Sample of Law Review Articles Year 2000 2001 2002 2003 2004 2005 2006 2007 Total
Frequency Percent 23 21.9 17 16.2 17 16.2 18 17.1 8 7.6 14 13.4 4 3.8 4 3.8 105 100.0
Table 2.6 Frequency Distribution by Type of Article for Reduced Sample of Law Review Articles Type of Article Article/Essay Note/Brief Comment Total
Frequency Percent 60 57.2 32 30.5 13 12.3 105 100.0
In the last stage of the sampling procedure, I read through each of the articles themselves in order to determine their potential usefulness for this project. Through this process I was able to eliminate an additional 29 articles from the sample. Articles that were dropped focused on doctor’s duty to treat, forced sterilization, ethics of assisted reproductive technologies (also known as ART), ethics of genetic testing, regulation of ART, regulation of doctors that offer ART, parental and embryo rights, inheritance rights, marriage and reproduction (for both heterosexual and homosexual couples), general research on women and medical, and sociolegal acceptance of new technologies. The
64 final sample of articles is comprised of 40 articles that range in length from less than 10,000 to more than 50,000 words each with a mean of length of approximately 25,000 words; 26 notes and briefs that range in length from 2,000 to 30,000 words with a mean length of approximately 5,000 words, and; 10 comments that range in length from 10,000 to 20,000 words with a mean length of approximately 17,000 words (see Tables 2.7 and 2.8). Table 2.7 Frequency Distribution by Year for Final Sample of Law Review Articles Year 2000 2001 2002 2003 2004 2005 2006 2007 Total
Frequency Percent 17 22.4 14 18.4 11 14.5 11 14.5 7 9.2 8 10.5 4 5.3 4 5.3 76 100.0 Table 2.8 Frequency Distribution by by Type of Article for Final Sample of Law Review Articles
Type of Article Article/Essay Note/Brief Comment Total
Frequency Percent 40 52.6 26 34.2 10 13.2 76 100.0 2.3 Summary
The methods and data that I employ in examining how the social construction of a disability occurs, for the purposes of this project represented as the case of infertility, are
65 as multi-faceted as the phenomenon itself. I felt that an intensive, qualitative approach to a set of narrative data would be most useful in teasing out the processes involved on individual, organizational and institutional units of analysis that would allow me to answer the question of how and why this type of event emerges and unfolds within our society. I employ data representing each of these units in order to address these questions: interviews with individual women, data from advocacy and support organization websites and law review articles that address policy concerns. In order to analyze the data sets, I approach them as narratives, as the stories that make up our shared understanding of how and what a disability is and what it means to be disabled. I take a constructivist grounded theory approach in coding the data and to further my understanding of this coding process through the use of situational analysis. Situational analysis provided me with a visual mechanism through which to understand the complex relationships, processes and interactions that occur within and among the data sets. In the following chapters I present the findings of this analysis, a discussion of the potential implications of these findings and also theorize on the possibility of infertility becoming a protected category of individual under the Americans with Disabilities Act.
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CHAPTER 3. WOMEN’S EXPERIENCE OF INFERTILITY: STORIES FROM THE FIELD 3.1. The Import of In-Depth Interviews as Narrative Data The in-depth interviews collected for this project are vital to its purpose as they provide a rich source of data concerning the lived experiences of women with infertility. They are also important because it is individual women who often bring the experience of disability or chronic illness to the public’s attention. As noted in Chapter 2, this happens through personal contact and communication with others in their day-to-day lives, through group activities, such as belonging to a support or advocacy group that promotes understanding of the infertility experience and who generate public support for their members, and also as claims makers in courts of law. The narratives that the respondents and I construct together concerning allow us to understand how these women’s lived experiences contribute to the construction of their own identities but also how they utilize cultural and social values to construct their identities as well. This data set is comprised of interviews held with twenty-three women from the Midwest. All of the women were contacted through their connection to a local RESOLVE support group. I contacted group leaders regarding my research and six responded indicating that they would forward my call for participants to their members and members of five groups did participate in the project. I employed a two-step process in gathering data: a survey and a one-on-one interview (See Appendices 6 and 7).Interview length ranged from sixty to one hundred and fifty minutes and the average
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interview length was one hundred minutes. The women whom I interviewed predominately white, in their early to mid-thirties, very educated and financially well-off (see Table 1). All of them had health insurance coverage. The majority of them belonged to either a non-denominational Christian or Catholic Church. On average, each had been pregnant at least one time; however, nearly seventy-five percent were childless (see Chapter 2 for a full explanation of sampling procedures and descriptive statistics). These interviews focused on their experiences of the stigma of infertility. The narratives reveal that many women feel isolated and alone—conditions that are largely constructed through selective concealment where they divulge information to only a very select group of people (Schneider and Conrad [1980]1992). They do this in an effort to avoid being vulnerable to open person treatment, where others feel welcome to comment on, and offer advice for, their condition (Cahill and Eggleston 1995) which is another major theme in this data set. However, the data regarding infertility as a disability and the effects of self-labeling are not as rich or in-depth. All of the respondents but one considered infertility disabling, both physically and psychologically but none elaborated much on their initial, positive response to the implementation of this label. All of these respondents believed that being able to call themselves disabled would lessen the stigma of infertility itself. In prescribing an overarching medical definition of infertility under this rubric, women constructed narratives of “boundary repair work” (Bloomfield and Vurdubakis 1995:538) wherein further medicalization of their condition may help them regain control over their bodies, via more accessible and affordable treatment, and over their lives, via legitimization of their condition.
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The narrative descriptions of stigma and infertility nearly all begin with the respondents’ story of their desire to have children. These stories reveal that being a mother was something that they assumed would happen naturally for them, within the realm of a normative life course, as reported in previous studies on women with infertility (for example see Letherby 1999; McQuillan, Greil, White and Jacob 2003). A typical response was that they have always wanted to have or be around children, to have a baby, to be a mother, as seen here: I've wanted to be around kids for as long as I can remember…I mean I started a daycare the day I turned eighteen. Desperation is a theme often linked to this seemingly natural desire to be a mother. This theme is seen throughout the data and here is linked to going into debt in order to try and fulfill that desire: I'm so desperate (laugh) to have a baby um that (pause) you know sometimes you know I kinda need him saying ok wait a minute [we don’t have the money right now] and then on the other hand you know (pause) there have been times when we have gone a little bit into debt for a month or two to pay for [a treatment]. The themes of desire and desperation are tied to the subtheme of the difficulty women have being around other people’s children. Whether it is in day-to-day visits or special events, many women’s stories revolved around these types of encounters. In this passage, the feeling that all of their friends have children compounds feelings of desire for their own children: You know we'll go to our friend's house and they have all my friends have kids and they'll be playing and we'll leave and say, we've gotta have a kid now. I can't handle seeing all these little kids.
69 And here, a typical social and religious event, baptism, is made even more difficult to attend due to the number of infants involved in the ceremony. In addition to satisfying her need to support her friend, this woman also relates in this story her need to protect her husband from her negative emotions concerning attending this event: We went to my best friend’s baby’s baptism, on Sunday morning, and there were like eight babies there being baptized. It was my own personal hell. And afterward we were supposed to go to her house for a meal, and I couldn’t, I couldn’t do it. I made it through the baptism, I smiled, I congratulated her and her family, I kissed the little guy on the top of the head, and I said to myself, I can’t do this, so I looked up at her and made up some[thing—I] said I’ve got a test, I’ve got to go and I got to the jeep and was welling up and thought, I’m not going to do this, I’m not going to do this…[I: And that was because of your husband?] Yes, because I know he is worn out. 3.2. Infertile Women’s Experiences of Stigma These narratives are important ones in considering how stigma is constructed in infertile women’s lives: the desire for children and their difficulty in being around children along with a “lack of a clear etiology” where infertility is understood as an illness category (Whiteford and Gonzalez 1995:29) can lead to feelings of frustration, non-conformity and otherness. Green et al. (2003) frame these feelings as outcomes of the stigma experience (also see Link and Phelan 2001; Cahill and Eggleston 1995). Women in this study reported that dealing with other women’s pregnancies was particularly frustrating for them. During these periods they reported experiencing non or open person treatment (Cahill and Eggleston 1995), status loss (either felt or enacted) (Lind and Phelan 2001) and disappointment in finding that those they felt were “knowing” supporters (Cahill and Eggleston 1995:688) could also provide unsolicited, unhelpful advice.
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This is particularly noteworthy where women note that it seems that everyone else they know is getting pregnant—and without difficulty. In this passage, the respondent notes that it never occurred to her that getting pregnant would be a challenge for her: All my friends you know they start trying and then [in] a few months you know, they've got a big belly and they're on their way but it just never never dawned on me that (pause) I would have any trouble what so ever. Here, the woman relates her sister’s ease in getting pregnant and having children—and her frustration at her own difficulty in doing so: And my sister just had her their, well her third child, but she has four children total. And bam, bam, bam. My mom had no problems getting pregnant, you know. You see women all the time have you know, have no trouble getting pregnant. And my body can’t do this one thing. And I find that very frustrating. The following passage is a complex one, especially as the friend who is being supportive is one who’s experience follows the rule of the old wives tale “adopt-andyou’ll-get-pregnant.” This type of experience is difficult to negotiate as she felt that her friend was one of the knowing, what Cahill and Eggleston (1995) define as “friends or family members who are aware of, sympathetic with, and prepared to deal with” difficult situations and “provide a ready fund of assistance” (688). However, difficulty here arises from the fact that her friend was someone who had a baby once she had adopted one: My friend who was the one who adopted and then had the two kids she you know she's like I know it's so hard you know because like last year we had like four babies born within two months in church and it was baby shower after baby shower after baby shower. (laugh) Finding out someone is pregnant has always been hard. Umm, especially like you know (pause) they get married and a month later they're pregnant I'm like (laugh) I've been married three years, we've been trying for so long or the people who just had a baby and have an oops already on the way umm…(pause) that's particularly frustrating.
71 Some women noted that their membership in RESOLVE gives them an outlet for these frustrations, a way to create an in-group from their out-group status in society. Here, group members co-create an etiology for infertility as an illness category, provide knowing support to each other and where grief is opening acknowledged. When I started [with the RESOLVE support group] we were all very much in the same boat, we had all been trying for several years, we were all in our late twenties, early thirties, and expressing a lot of frustration that everyone around is pregnant (begins crying), most people are having children, some are on their second or third child by now, so we related a lot, we all used each other as a sounding board…for emotional support and education. As the claims regarding their non-normative status unfold, women begin to relate them to the discrediting nature of their status as non-mothers. In particular, many of the narratives include descriptions of familiars and non-familiars alike asking when they are going to have children. This phenomenon, that of asking personal, uninvited, intrusive questions, is referred to as “open-person” treatment (Cahill & Eggleston 1995:685). As these women are married and of childbearing age people appear to feel that they have a warrant to demand an explanation of their non-normative status. The following story begins with being questioned by a religious leader, to generic others, to attending baby showers to the complaining of parents about their children. It is not unlike other narratives found in this data set that involve relating a series of interrelated events and experiences that are used as grounds for their feelings of stigmatization. I’ve been married a year. Already! Our priest came up to us who is also my husband’s cousin, and he’s a Monsignor, Monsignor came up to us and said, um, so when are you guys gonna have kids? When, oh no, am-am I gonna have some baptisms pretty soon? Other people have consistently come up to us and um, and that’s hard. That’s hard to handle. Going to baby showers is hell. All of my friends have, are like on their third kid, you know, cause I’m older. And um…
72 it’s just that’s hard. And it’s hard to hear people talk about um… how horrible their children are. (laughs) Or you know, just there’s a myriad of things that are, I try not to be all touchy and sensitive, but it’s hard sometimes. Here, the narrator relates these incidences to her treatment and subsequent disclosure of her condition: The question is inevitable, when are you gonna have kids? I kept blowing it off, saying things like, we’re practicing…but when I started the more invasive treatments, the injectables, I was off from work so much I had to tell my boss, a few of my co-workers, clients. 3.2.1. The Dilemma of Disclosure Such disclosure is a hybrid of Schneider and Conrad’s ([1980]1992) continuum of strategies of preventive and therapeutic disclosure. In this passage the woman notes that she did disclose her condition and treatment demands in order mitigate possible negative reflections by those with whom she works. Preventive disclosure is revealed as a strategy in that she is attempting to control perceptions of her as a mother and a worker. Therapeutic disclosure is also involved as in telling of the treatment she is undergoing to become pregnant she may receive more empathetic treatment from those to whom she has disclosed her condition. The conflict women feel about disclosing their condition does vary across this continuum from selective concealment, which is often portrayed as a strategy employed in order not to have to out themselves as non-normative and avoid open-person treatment, to preventive disclosure, which is often explained as a way of subverting other’s attempts to treat them as open persons, to therapeutic disclosure, which is engaged in to gain emotional support and empathy from others in an attempt to control their feelings of stigmatization (Schneider & Conrad [1980]1992; Miall 1986; Herman 1993). Here, a report of selective concealment is employed wherein the condition of
73 infertility is considered too private to share with others unless support is sure to be offered. A doctor is reported as advising against telling anyone about the condition. I feel like it’s just a private thing, and I don’t need to share it with just everybody. I share it with those who I feel like will be able to support us. I guess. Um, I don’t share it with people that I feel like are not going to be supportive Or [are] not gonna be able to handle it. I know I’ve heard like my sister in law said her doctor told her not to tell anybody. In this passage, preventive disclosure is the reported strategy employed. The narrator suggests that since she allowed infertility to have such overarching importance in her day-to-day life it made sense for her to talk with everyone about her experiences. I'm the kind that deals with it by uhh talking about it with my family and friends probably because I've let it consume so much of my life that (pause) to not talk about it would be hard because it's such a big part, of it's been such a big part of [my life]. I know a lot of the women in the support group, you know [are] more personal about it for me that hasn't worked (laughed) umm so well. The following is an example of therapeutic disclosure, where disclosure is made to a certain group of people likely to provide much needed emotional support. Proximity as well as regularity of contact both appear important in the decision to disclose to her condition to this group of friends: I've kind of (pause) communicated with [long distance friends] less because it's felt like I never had anything say it other than oh another fertility cycle failed, umm (pause) but most of my friends are friends at church umm we play cards with some friends from church every Saturday night, or every Friday night, and then then my group of girlfriends that I hang out with are from church and so umm (pause) you know everybody's talking about what's going on with their kids or their families or you know whatever, and so when everybody's talking about their ups and downs that's when I'll talk about what's going on. A lot of times, they'll ask specifically so umm (pause) a lot of times
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it's also after a fai-failed cycle (pause) umm I'll bring it up because that's when it's tough so you know they just listen, sometimes they cry with me and give me a hug. The answer to the question of whether or not to disclose, and if so to whom, mainly revolves around what is reported in this last passage—whether or not disclosure will garner support and resources and result in fewer questions and less unsolicited advice. In short, the issue appears to be whether or not disclosure will assist in normalizing the experience of infertility. For example, in the following passage hurtful comments and strong opinions about infertility treatments are cited as reasons for not disclosing: One reason I don’t tell some people is there are people who are incredibly un… the opposite of thoughtful, whatever that is, I can’t think of the word I want right now. There, I-I’ve had people say some very hurtful things to me. There are people who have very strong opinions about fertility, infertility treatments, and like I said, my friend does. And, there are others, and so I am careful eh… about who I tell for those reasons. Here, the story takes a different turn. In this next passage a woman claims to have disclosed her condition to a relative who has also had difficulty with fertility believing that she would receive understanding, empathy and support during her time of need—one of the knowing. However, things did not turn out as expected. Rather than receive what she hoped for, she was regaled with stories about the other woman’s children and her own hopes for another baby. In this way, this respondent received non-person treatment, where her problems were swept aside rather than discussed, in lieu of the supportive treatment for which she had hoped. Like 12 years ago, and um I knew that she had gone through it, and we kinda thought she might be a good support, and so wanted to try it out and see how it went. Um… it was kinda weird because while she was supportive,
75 it’s been 12 years. And to me, I don’t think I would ever forget how horrible this is, but time really does fade things, and… um she’s also not the best listener. And so it’s not turned out to be the best source of support. In fact, we were on vacation with them this last [time], and she and my brother in law and I went out for drinks one night. She spent the whole time talking about her children, and how she’s thinking about maybe having another baby, and, but she’s not sure and just all kinds of things that… I guess I would have thought the way that conversation went…she [could have] sensed how wrong it was, how upsetting it could be. And there is the unsolicited and unhelpful advice that women reported receiving when they disclosed their condition. This advice ranges from the traditional secular “just relax” or “take a vacation” responses to “just adopt and you’ll get pregnant” to the traditional religious response of “in God’s time.” Here a woman gives an account of mother’s reaction when told of her daughter’s fertility troubles: At first I didn’t tell anyone [about my infertility], I was ashamed, I was embarrassed, confused, I didn’t tell anyone…after a couple of months of treatment and failure and heartbreak I told my Mom and she said relax, it will happen, go on vacation, have a couple of drinks, it’ll happen…you know the same cliché BS you get from everybody. In this narrative, the mother to whom the condition is disclosed has a similar reaction, giving similar advice, but also appears to be pressuring her daughter to get pregnant: My mom is just from the beginning, oh you’ll pop out a kid, it’ll be no problem. You know? She just, because she never had the problem. She doesn’t get it. And I’m telling her the doctor’s saying this and this, but II don’t know. I think she thought I was overreacting. Um, and she’s like the first to tell me about alllll her friends grandchildren and my cousins’ kids and my sister’s kids, and I just don’t think she understands how it affects me, Insinuations that couples are rushing into fertility treatments, especially invasive ones, when others feel that they should ‘just relax’ in order to get pregnant, is also seen
76 throughout the interview data. Here a woman relates how her husband reacted to his pressure from his family regarding their treatments: When we were first going to IUI's they said something to the effect of “well, don't rush things.” They didn't think about what they were saying and we don't fault them for that and my husband who (pause) hates confrontation (pause) actually was like, “what do you mean, don't rush things. You think us going into invasive procedures is rushing things, you don't think we've tried everything else?” I mean I was stand back cuz he doesn't get, he does not get confrontational… Women also reported that interactions with fellow church-goers were problematic. The main theme of these passages is that believers should allow pregnancy to occur naturally in order for their families to be built according to “God’s plan.” Interesting, here, adoption is linked to not forcing biological pregnancy: People at church have sometimes umm been a little bit more (pause) on the end of sayin the wrong thing…usually it's, you know, well when the Lord's ready, or, umm, (pause) then they'll say just adopt…adopt and you'll get pregnant. Sometimes an onslaught of unsolicited questions, comments and advice result in women feeling a need to disclose their condition in order to prevent further infringement on their privacy. This is one case of why the question of whether or not to disclose can be so difficult. Preventive disclosure may quiet questions but it may also lead to further, even more intrusive ones. In this example, the man making the comments is given the benefit of the doubt but his willingness to treat his acquaintance as an open person does highlight the notion that women who are childless are not meeting their societal obligations. And he uh, we, well you know, made comments…And I said, you know, it’s, it’s not that easy for everybody to have kids, and once you’ve been in my
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shoes, then you would understand that you kind of have to make sacrifices and decisions, and figure out what the priority is. So, you know, it, it, he probably wasn’t thinking. But that kind of cut, you know, cut me. I mean, sure yeah that’s great, I’d love to have three kids of my own at home, but that’s not the way it’s working right now. So… what do you do? In addition, women gave many reports regarding disclosure of their infertility at work. The explanations for the need to disclose or conceal their condition vary from whether or not emotions, time away from work, or potential pregnancy require any boundary repair work. In this example, the respondent asserts that she is able to maintain face at work (see Goffman 1967) by suppressing her emotions during work hours: Usually I’ve got my work- work/home wall/boundary, and when I’m at work, I can hide my feelings and shove it inside. I don’t talk about it [but] I have a few co-workers that know what’s going on. Here, a woman who claimed to have discredited herself at work through an emotional outburst employed preventive disclosure in order to save face with her co-workers and also to explain the need for time off to her boss. I have since shared it with some of my coworkers, primarily because I flipped out on them, and I felt like I needed to explain why. I’ve not shared it with my boss. She knows that I miscarried because I needed, at that point when I had the chemical pregnancy, I was so upset, it was so unexpected, and I just hadn’t wrapped my brain around it. I needed to take some time off of work, and I missed a meeting and I needed to explain it. And I felt like, you know, she’s not going to understand chemical pregnancy… In this narrative, the respondent maintains that few people at work know about her condition because concealing her condition would not free her from its stigmatizing status in this part of her life. I: Do the people in your department know?
78 R: umm, as few as possible, umm the secretary kind of [knows] because she just keeps track of you know who's gonna be late and what not, one of my coworkers who has kids and (pause) is uhh a little bit more free spirited than the rest of the gang she knows, but, well (pause) it's just kinda nice to have some (pause) place to go where that's not what defines you (pause)… Further, pursuing new employment, and the problems that ensue, are also a theme that emerged in the interview data. If, how and when to disclose their condition due to fear of discrimination was a point of contention for several of the respondents and was voiced as particularly acute for women with high-powered careers. Further, what is more stigmatizing: disclosing the need for time off from work shortly after hiring to pursue fertility treatments or interviewing for jobs while (hopefully) pregnant? The following passage is representative of this theme: If I (pause) wholeheartedly pursue a new career right now, and get a job and then turn around and late September have to start coming into work late and taking days off and stuff, how does that look? However, if we wait till after either transfer to find out whether or not it worked and everything, then I'm pregnant I'd have to find a job right away because (pause) obviously I would need to be looking for a job while showing, it-it's kind of we're going back and forth on that one. 3.2.2. The Decision to Educate Further accounts regarding disclosure have to do with women’s feelings that no one cares about or understands their plight. Narrative claims within this theme revolve around the notion that people in general have very little sense of what the condition of infertility is or how treatments affect a woman’s day-to-day life. In this passage the perception that others do not want to hear about the difficulties of pursuing pregnancy via fertility treatments is voiced: Sometimes I feel, sometimes it feels like no one cares, you know, there are
79 times when I feel like everyone is sick of hearing me talk about it, nobody wants me to say, you know,…we went to the doctor again or wants to hear anything about it. And, here, two more examples of the perception that others don’t understand the difficulties—perhaps because people are not familiar with the condition or its demands: I just think society, it’s hard for them to talk about something like inferinfertility. I think there’s not a lot of good education out there. I think that there’s um… people don’t understand how hard it is. I just don’t think there is enough out there about infertility…so many people just have no concept, no clue. They can’t wrap their minds around it, they have no idea. In this passage, the respondent relates the experience of receiving congratulatory cards as they anticipated their first round of in vitro fertilization: People in general don't understand IVF, they don't know what's involved…a couple of his cousins sent us emails and cards congratulating us (pause) like oh you're gonna be great parents congratulations like it was a sure thing-they didn't understand (pause) you know that this was something doesn't work for everybody, it's not a miracle and so that was really hard to deal with on that first round, and just trying to get people uhh (pause) educated about it. Having to be that educator, however, is also seen as being problematic. Here, the narrative turns to how tiring explaining infertility and the treatment process can be: I just got I get really tired of explaining the whole process and they have no idea and they want to know what the process is and (pause) so even for them I have to keep explaining you know every step, and I actually don't know anybody [else] who's gone through this so that's been really challenging. Feelings of frustration due to others unkind remarks also result in explaining infertility and treatment to those who make them. In this passage, a woman is confronted with disparaging remarks about multiple births as depicted on television by family
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members who are unaware that she has infertility and may end up with a similar treatment outcome. In these types of cases, educating others can act as an attempt to regain status loss—whether felt or enacted through discriminatory behavior (Link and Phelan 2001). Becoming an educator in these types of cases changes the power differential in the interaction in at least three ways. First, the potential educator shows that they are not afraid to confront an issue directly. Second, they put themselves in a position of authority. Third, they impart knowledge on which they are an expert. In this case, where the woman felt upset due to unkind remarks, she took on this role and overcame her felt status loss: I was at home and I hadn't really told my sister and my brother (I'm the Oldest) what was goin on yet and we were visiting and they were all there at the same time for some reason and… we were watching Jon and Kate plus 8 and my sister made some nasty little comment about people using umm fertility stuff and (pause) she shouldn't have done that cuz that's why she had so many kids and it's her own fault and so I got upset and said you know, hey we're going to have to start doing some fertility stuff cuz we can't get pregnant on our own and you know a lot of people are like that. It's not you know you don't have that much of a choice and I'm sure this was not something she planned on was to have six children. 3.2.3. Religion and ART: Reflections and Reflexivity For this group of respondents, and in this set of narratives, notions about God are not only employed by others in navigating beliefs about infertility and infertility treatments, but also by the narrators themselves. There are three specific ways that this theme appears in the data. First, feelings of failure to uphold God’s call for his flock to multiply; second, overcoming anger towards God and his will; and, third, abandoning
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portions of their religious beliefs due to their desire to have children. Here is an example of a passage where the respondent communicates their feelings of failing God: I also feel that, I’m a spiritual person, and I also feel that God put you on this earth to create in His name, to procreate, or whatever, and because I’m a failure at that, I mean I’m a failure, I just feel like a failure… In this, the second type of passage, the respondent felt angry and depressed as they confront what they believe to be God’s will for them: I was very angry at God for a very long time and my therapist helped me to recognize and accept that God’s will is God’s will, otherwise I will just keep harvesting the bad will and the anger and depression, so I have to accept that God has a reason, God has a plan, and I have to put my faith in him. And, here, in this third type of narration regarding God and religion, the woman reveals that she and her husband remain devoutly Catholic despite the constraints the church attempts to put on its members in regards to reproduction and reproductive technologies: I mean IVF in general it's against Catholocism, and but we're just like whatever we don't we don't care. That's we believe what we believe and we are Catholics, we go through all the sacraments and everything but (pause) it's we believe it's not their place to tell us how to have kids so that's kind of our little bitterness against the the other part however is that they are very very much against the act of like selective reduction well my husband and I have talked about it ad nauseum and if (pause) we were to have three is kind of the question mark, but if we put back four and end up with four more we would reduce down to two. We would treat it as a miscarriage and not an abortion but (pause) still it would be reducing down to two. 3.3. The Effects of Discrediting and Discreditable Status There are multiple ways that the stigma of infertility, in both its discrediting and discreditable forms, affects these women. Reports of shame, pain and blame are abundant
82 as are stigma’s effects on self-confidence and self-esteem. Stigma is also reported to have effects on the relationships women have with their husbands. In all, infertility and its stigma are asserted to “color” women’s day-to-day lives in which performing normatively becomes increasingly difficult. 3.3.1. Effects on Self-Confidence and Self-Esteem Here, a woman reports that she is becoming more assertive in her response to the question, “when are you going to have children?” As seen in Cahill and Eggleston’s (1995) research on wheelchair users, she reports that more often than not she receives others’ pity and consolation in response to her reporting that she is unable to have children. Both the questions and responses take their emotional toll on her. She feels shamed at these occurrences that add to the pain she already experiences in not being able to have children. Now when people ask me I say no, I am unable to have children. Um, the first time I said it I got about a word out and then lost it…and its getting easier now, but I get asked it all the time, I don’t know if this happens to other women, or if I’m just more sensitive to it, but I swear I get asked it at least once a week when am I gonna have kids. [I: And how do people react to it?] With pity [starts crying], they say, Oh, I’m so sorry or strangers will reach out to give me a hug as if they are trying to console me…I hate it. Or, the other reaction you get is, well, why don’t you just adopt? As if I can wake up tomorrow and go adopt a kid, its that easy. They have no idea of the emotional rollercoaster, the shame, the pain, they have no idea. Feelings of responsibility, where they blame themselves for their condition, is another way in which women portray the import of shame and pain in the narratives. In this story, the woman reports that her husband has an abundant supply of “super sperm” which contributes to her feelings of responsibility and shame for their dilemma:
83 I think another aspect I don’t think I’ve talked at all about is-is feeling responsible. Um… you know, my husband has no problems. His sperm are like super sperm. He’s got more sperm than you know, we could probably give someone half of his and we’d be fine. And um, I mean his tests couldn’t be better, and… there are times when… it… it’s not guilt, I don’t know what it is, but… I feel like it’s my fault. And I feel like I’ve denied him something cause he’ll be such a great dad. And, in this passage the narrator relates her feelings of guilt regarding her infertility. She claims that if she had taken better care of herself she may not have developed infertility. To some degree I feel guilty (pause) because the doctor did say I asked him if, I'd lost thirty pounds and if I continued to lose weight would it be worth cuz he had mentioned that he didn't know if it was my weight or if it was uhh a low egg reserve going on. Well if I lost weight umm would it be (pause) should we consider coming back and trying another cycle and see if I respond better… so I feel guilty. I've always been heavy and I feel guilty that I hadn't (pause) taken better care of myself… Stigma and shame have profound effects on those who believe they are responsible for acquiring their disease—something that they feel they should have forseen and controlled (see Livneh and Antonak, 2007, for a discussion on this topic). Women in these narratives report that they have lost confidence in themselves and that they are perceived as weak and irresponsible by others as well as by themselves. In the following narrative, the respondent tells of being diagnosed with depression and of her attempt at rebuilding her sense of self without medication and leaning so heavily on her husband: My therapist told me I was depressed and prescribed medications, I refused them. I had been on enough drugs, enough mind-altering drugs in my life [during the infertility treatments] that I had no desire to go on them…and now I’m working with the therapist to work build back my self-esteem, my self-worth,
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my self-confidence, to try and find inner happiness within me so my husband is not a crutch. Here, the focus is on strength versus weakness and pain versus joy. In allowing others to see the pain that has resulted from her experience of infertility this respondent reports that she feels they believe she is a weak, and struggling—a portrayal of herself that is damaging to her self-confidence. R: I don’t ever like to be seen or perceived as weak, I don’t like to let anyone know my pain or difficulty, I don’t want anyone to know my struggle, to know that I have any problems. I want everyone to look at me and say, oh, she is so beautiful and strong and smart. I: And you can’t be all of those things and be vulnerable, too? R: I don’t think so, not in my mind. And, in the following, the respondent invokes the notion that being hard working and responsible results in accomplishing your goals—including the belief that this extends to having children. In not being able to have her own child, she questions her worth as a person. I: So not being able to have a baby affected your self-worth? R: [still crying] yes, very much so, very much so…I kinda believe in the American dream, if you work very hard in life you can have everything you want, and I’ve worked very hard in my life and when I worked so hard for something and couldn’t have it, it was very devastasting…it went against the ideals that my parents instilled in me, that if you work hard you’ll get your reward….we had this grand plan, we were responsible, and smart, and it failed and it really hurt…it really made me feel like…less of a person. 3.3.2. Effects on Marital Relationships The effects of the condition of infertility in conjunction with its stigmatizing characteristics can create difficulties in marriages (Peterson, Newton & Rosen 2003;
85 Loftus 2004; Sternke 2005). The following is a typical, albeit brief, account of marital difficulties found in the data: The biggest struggle I’m dealing with right now is that the infertility has caused a huge problem in our marriage, yes, to compound everything else…and there are others in the support group who are having marital troubles as well. These narratives reveal that in isolating themselves from others in an attempt to protect themselves from potential stigma, women sometimes end up relying heavily on their husbands for emotional as well as physical support. This can prove problematic as husbands may already feel isolated from the treatment cycle themselves and also may feel that expressing their distress is not a welcome turn of events. Here, the respondent reveals that she is sure her husband is feeling distressed and that she believes that she contributed to that distress: R: [Talking about her husband] I think it if it was hard for him and he doesn't he doesn't talk much you know like I can tell that things are bothering him more umm I'm sure it was hard to deal with me being on crazy hormones and (pause) crying one minute and being a raving bitch the next (laugh) you know… In this account, the respondent presents her husband as the only person she felt safe in sharing her pain at not being able to have children and her ensuring emotion. Unfortunately, her husband’s appearance of strength was just that, an appearance. She shares that she feels responsible for their martial troubles because she relied on him too heavily for support—a piece of information that she claimed he did not share with her until it was too late. This produces yet another source of guilt for women in similar situations. Going through my infertility I did push people away, because they were
86 all married, families, kids and….its very painful when your best friends are caught up in their kids and families, soccer practice, and they have no time for you…its very painful…so I did push away some of my friendships and the only thing that was good and strong was my husband. Unfortunately I didn’t know that I was taking a toll on him…they way he described it to me was that I had worn him out. 3.3.3. Effects on Quality of Life The consequences of stigma and its reported effects on women in this study are described as affecting their overall quality of life. Accounts of how this is experienced vary from an it appearing as an overarching umbrella that “colors…everything” to a “slap in the face: It colors pretty much everything in my life. And you’re going through physical pain, you’re going through emotional pain, your life is turned upside down because you’re trying to maybe achieve this dream, and every month you have to face the reality, right smack in your face. Like a slap in the face a lot of times, but you can’t do this. You can’t do this thing that pretty much feels like every other woman in the world is able to do naturally. And you’re not good enough for whatever reason. You just can’t do it. This respondent reveals that her infertility has brought on a major depressive episode and that it has affected her daily functioning: I: and um are there other ways besides the time and the money that you know struggling with your fertility with getting pregnant has affected your day to day life? R: umm (pause) lots of tears (pause) maybe not day to day but weekly um (pause) it's been hard to focus on the research aspect of my career because so much of me's focused on the infertility…you know it has brought on a major depression episode and panic attacks and so the umm and (pause) it's been (pause) it's taken longer and it's been harder to get over (pause) than in the past and so that has (pause) really impacted my daily functioning and happiness.
87 Here, the experience of infertility is compared to drowning: It feels like drowning (pause) that's how I always imagined it in my head. That you're like twelve feet under water and you can see the light, you know, you know which direction is up, but you can't make it. The most pervasive image has to do with the nature of feelings of loss, that these losses are experienced at expected periods of time, and how it becomes chronic mourning: Every month when I start my period I mourn the death of a dream, the dream of a family, of watching my son throw a football in the backyard with his Dad, a dream of being pregnant and bearing a child, I mourn that dream every month, every month… 3.4. Individual Accounts of Infertility as a Disability As discussed in the first two chapters, the social construction of infertility as a disability has its roots in discrimination cases brought against employers by individual employees. And, as presented in the previous sections of this chapter, the basis for discrimination in these cases began with the discrediting and discreditable nature of the condition of infertility. The themes that appear in this data which correlate with studies regarding other types of diseases and conditions are the notions of uncooperative bodies and the lack of control that individuals have over their bodies. 3.4.1. Unpleasant Awakenings In this narrative, the respondents ill-functioning body makes her angry, as reported in Waskul and van der Reits (2002) work with cancer patients: I am a planner and I'm (pause) I do like to know what's going on and it does bother me that (pause) here was this PCOS and I couldn't do anything about it and I I didn't know that I had it. I didn't know that (pause) you know
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my body wasn't functioning. That really pisses me off when my body does not do what it's supposed to do… Here, the story concerns the naturalness of fertility and the expectation that our bodies destine us to be parents. In elaborating on this theme our bodies are presented as failing their duty by not complying with our wishes: Your body should naturally, without you pretty much even trying, should be able to accomplish this dream and this thing that will make you the happiest, you think, that you’ve ever felt in your life. And um… your body’s failed you. You know, the-the-you-your body which naturally should be able to do the, make, achieve this dream has completely failed you, and-and won’t do it at all. The inability to reproduce is a loss unlike other losses. The discovery that having a child may be difficult is a “shock”—especially as the majority of other people in our lives seem to have children so effortlessly, even without necessarily wanting to do so. I think it's a shock to have (pause) something that you want so bad all of a sudden be unreachable and to see (pause) to see everywhere around you that other people are able to attain it so easily and (pause) to know that (pause) that it either may not happen or that it's going to be one of the hardest things that (pause) you have ever done in your life to get something that (pause) that people have accidently, or that people don't care about or that (pause) umm comes real easily and I think that makes the biggest impact. It's a big loss and a big (pause) grieving (pause) process. 3.4.2. Control: Loss and Acquisition The lack of control over their situation is another theme that is important in considering the imperative of infertility as a disability. Feeling a lack of control can reportedly be overcome when a disability label is applied to a condition and accepted by its sufferers. In considering their current situation, many women reported feeling that lack of control over their situations.
89 Yeah it's been hard not to have control over what's going on. Now is really really difficult and (pause) cuz I'm just waiting. I hate being in limbo. I really really hate waiting and that's all that this has been the whole process has been waiting for one thing to go to the next. When they first told me when I was crying in the doctor's office and was just really really upset about it I didn't know what the shots were going to feel like, I didn't know how I was going to react or you know what questions I would have so that was kind of all scary and I really hated the waiting between one thing and the next and it's been hard not to have control over what's going on. Now is really really difficult and cuz I'm just waiting. I hate being in limbo. I really really hate waiting. None of the respondents had heard of the discrimination cases or had discussed the proposal that infertility may be a disability with others. However, when presented with this information, all but one of the respondents reacted positively and felt that, at the very least, this classification would make resources available to sufferers. At the other end of the spectrum, some respondents found this reimagining of their condition revelatory—that the term disability described their condition more fully than any conceptualization they had previously heard. I suppose if people can recognize you know that you have a medical condition and that it is I don't know that (pause) I don't know I haven't thought about that being a disability--is it really a disability versus some of the other programs that we have? I guess I would have thought FMLA would've been more, something within that, but I suppose, yes, people will look anywhere they possibly can to find support, you know…and I have to consider that I am in a privileged position. Otherwise, I wouldn’t be able to pursue treatment…so really, maybe this makes good sense. Here, the narrative concerns basic life functions, an interesting turn as the ADA definition of disability includes the restriction of one or more “major life activities.”
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Even without being familiar with the ADA definition, this respondent intuitively made this leap: You know if you are looking at it more from a legalistic or medical definition then you're looking at basic life functions, you know a basic life function is to, is definitely having children. The majority of the responses concerning the potential of defining infertility as a disability followed this script nearly identically: It is definitely a disability…physically and psychologically. Your body can’t do what it is supposed to without help…the treatments themselves are disabling…and, whether or not you are able to use technology to overcome it and become pregnant you never graduate from having infertility… 3.5. The Benefits of Labeling Infertility a Disability The positive response to the suggestion that infertility be labeled a disability mirrors the responses that Thoits (2005) notes in her work with women who sought treatment for mental health problems. Women in her study with higher levels of education and income were more likely to reflect about their condition and actively seek ways to mitigate its effects. For the women in this study, the possibility of claiming a disabled identity would provide these women with evidence of an authentic medical condition to present to those who questioned, blamed, or advised them otherwise. They also asserted that they would find this label useful in procuring access to treatment to overcome their condition and have a biological child. In this passage regarding the cost of treatment and insurance coverage, the expense of continuing with relatively low levels of medical therapy is related:
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R: [It] was scary moving on because, it was unclear what the insurance did and didn't cover [many treatments] and just the prices that are associated with, with the RE. I: Did your insurance pay for the clomed? R: uh, yeah. So…my insurance pays for 50% of my drugs, they pay for all my ultra-sounds which in the monitored cycle that can be you know a umm two or three ultrasounds at $220 a pop, that's not chump change. I: no, it's not R: they did not pay for the IUI or the uh sperm wash [or] for the IUI…which is why we haven't decided whether or not we wanna do this like last cycle umm cuz the meds are gonna run $800 and then another $300 for the umm IUI and sperm wash… This respondent declared that right now her insurance pays for none of her treatment. She was very excited to consider that declaring infertility a disability might give her an opportunity to have a biological child that she might not otherwise have: [The insurance]..It does not cover [treatment]. The only thing it covers is the diagnostic. They say we will pay anything we have to pay to tell you what is wrong, but once you know what's wrong, we're not gonna tell you how to fix it. We're not gonna pay how to fix it. In the following account, the respondent recounted her efforts to educate her insurance company regarding her treatment. She compares their denying her claims to denying treatment to a cancer sufferer. In addition, she notes that insurance company’s denial of coverage force women to take bigger risks in their treatment which, in the long run, are likely to cost companies more money. I have big rants about that with health insurance companies like that's like telling a cancer patient, well dia-we'll diagnose your cancer but not fix it. It's like you know and and their argument, and I've actually had this argument with an insurance company on the phone before cuz [they won’t pay] and their argument is (pause) having children is elective (pause). My response to that is you're right. People choose to have kids. However, if they can't have kids that
92 is not their choice, it is disease just like cancer is disease. And what they don't realize is the insurance companies that pay for fertility treatments, actually save money because women that have infertility that don't have it covered do exactly what my husband and I are getting ready to do and that's we're going to sign a waiver that says put back four eggs instead of two (pause) and which costs the insurance company far more than an infertility treatment would (pause) but what choice do we have? It's a one shot deal. We can't afford to keep continuously [conducting] IVF. However, she also noted that infertility is a unique experience, a unique form of disability. A number of women note that this is because they must experience the failure of their treatment, and the ensuring disappointment, on a monthly basis. You know, I know it had been at least a year. So it must have been oh-five. And, um, thinking why isn’t, you know, why isn’t this working and then you know, it’s just kinda like um, an, an ongoing rollercoaster. You know? It’s, it’s kinda like okay, you, you try and then you get your period. And then you continue to try and then you get your period. And so you’ve got all this hope, and, and that this is gonna work this time, and then you know, you start getting cramps and then you get your period. And then, just the longer you go on through this process, the worse it gets. You know, the worse the kinda the roll, the emotional roller coaster gets. And a few women note that infertility is a unique case due to the gendered nature of their condition and its effects. Here, the dichotomy of between women who work and women who have children is evoked as is a fear of being “mommy tracked.” There’s still the stereotype with women, and work, and that you will chose your career or you will chose your kids and staying home with your kids, and so um, first of all, I-I am kind of a private person anyway, so I don’t think that’s any of their business. I-I work with a lot of men. So I don’t think that’s any of their business. But, secondly, I don’t want them to pigeon hole me into this oh she’s just gonna stay at home and try to have kids. Also, a few respondents noted that infertility is a unique case because overcoming their condition doesn’t necessitate a technical, biological solution.
93 I don't really feel a need to be pregnant unless it's going to be of our genes… umm because let's face it (pause) swollen ankles, puking, (laugh) you know I think the only I would miss about not being pregnant is not feeling the baby move inside… We’re going to have children one way or another. I mean it's sad and we deal with it, but (pause) we're of the mentality that in some way shape or form, we're gonna have a kid whether we adopt or through IVF or through surrogacy so why stress about it? It'll happen however it's gonna happen. And, while it’s known that there is no guarantee of success with treatment, many respondents recounted their husband’s or their own fears regarding the option of adoption. I'm really open to adoption. I kinda wanted to have one of own first and then (pause) umm I think adoption will be fine. [My husband’s] not as ok with it. I think eventually he would be ok (pause) right now he's not. He wasn't willing to look that way. My husband has no interest, no desire whatsoever to adopt. I kinda wave back and forth…one of his sister’s adopted and it was less than ideal experience and one of his supervisors at work adopted and it was not a good experience so I think he’s a little tainted by that, and I uh, I have not completely ruled it out, I have some emotional struggles I need to, I need to overcome before I could bring a child into this home. And a few others weigh the option of remaining childless rather than further clinical treatments or seeking to adopt: [I’m reading] a book called Sweet Grapes and it's about a couple who chose to be child free (pause) and so we're exploring that option (pause) umm and I think that'll be interesting because everybody assumes that we'll if the doctor says they really can't do anything more for you well the next step is of course adoption (laugh). However, one respondent was adamant that infertility is no way, shape or form a disability. She indicated that she thought labeling infertility a disability in order to make
94 treatments more financially accessible would be like “using a sledgehammer…to drive a nail.” She felt that there were probably other means, such as seeking insurance mandates, that would be more appropriate. It's not a disability…you don't come in a wheelchair or cane or with umm huge glasses on or you know..If that's the only way to get the coverage that that is being sought than obviously then sure that makes sense but it seems like (pause) you know it [labeling infertility as a disability] seems like you know using a sledgehammer (laughs) you know (laughs) to you know to to drive a nail, you know like maybe just a regular little hammer would be ok, you might damage the drywall in the process you know what I mean? 3.6. Summary In reviewing the narrative data from these interviews, the themes that are most prominent involve women’s experiences of their discrediting and discreditable statuses within their social circles. Their reports reveal both types of stigma—discredited due to their apparent lack of children and discreditable when their condition is divulged. Whether they choose to conceal or disclose their condition women report that they endure either open-person treatment, where people feel free to offer comments, ask questions, and bestow advice, or non-person treatment, where they and their condition are purposely ignored. The data are not as rich when examining them in the context of disability and self-labeling. However, this does not indicate that the there is a lack of awareness of innate awareness about what such a label might confer on women’s individual and collective experiences. Women’s individual experiences are the source of need for support and advocacy from groups, such as RESOLVE. They are also the basis on which discrimination lawsuits are founded. In the next two chapters, accounts from the RESOLVE site and legal scholar’s narratives concerning cases of discrimination and
95 claims for disability status comprise the stories regarding and progression of the infertility experience from the individual to the institutional level. Through analyzing and reporting on this data, the import of women’s experience, and their anguish, is reified and reinforced.
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CHAPTER 4. CONSTRUCTING AN INFERTILE IDENTITY: ADVOCACY GROUP NARRATIVES 4.1. The Import of Advocacy/Support Group Websites as Narrative Data As noted in Chapter 2, this source is important to this study for several reasons. First, the advocacy and support groups provide a community of like-experienced women. They provide a space where having difficulties with fertility is not something unique or extraordinary but a daily, lived experience shared by numerous others. Support and advocacy groups supply a new source for relationships and a “safe space” in which women can feel more normal, find support and learn to traverse the “outside” world. In addition, they provide a platform from which their lived experiences can be expressed as a group and from which these expressions gain rhetorical and political power. Therefore, the information on the group websites is inscribed with individuals’ experiences and beliefs. The sites, and the development of their content, emerge from the stories that these women create together in effort to understand their own experience, educate others (which includes the legal community as well as intimates, families and friends) about this experience, and, in so doing, gain empowerment for themselves and for their group. In this way, groups can act as a proxy for them in order to affect change in the way that infertility is legally labeled. I analyzed thirty-six separate text documents from the RESOLVE site downloaded or copied from the Learn, Cope, Take Action and News sections of the site. Of these, twenty-three yielded analytic results. I cataloged them into three categories:
97 initiatives, insurance coverage and legislation and substantive concerns (see Table 2). Initiatives are narrative constructions concerning actions that RESOLVE is taking, or asking its members to take, on issues regarding infertility and family building. For example, in the article Vital Research, one of RESOLVE’s initiatives is a position statement on the organizations endorsement of “the highest possible allocation of federal dollars and strong, sustained resources for health programs” and, in particular, funding for “basic biomedical research” through the National Institutes of Health. Insurance coverage and legislation documents are reports that include general information as well as specific regulations and legislation that could affect ART and access to treatments being considered on both the state and federal levels. One example from this second set of documents explains research findings that indicate states with mandated insurance coverage for in vitro fertilization have a lower number of high-order birth rates per implantation than states with no insurance mandates (Impact of Mandated Insurance Coverage). Substantive concerns include documents that include reports on and claims regarding topics such as the regulation of ART and embryo donation (see Chapter 2 for a full explanation of sampling procedures and descriptive statistics). 4.2. Infertility and Stigma Stigma and its effects are prevalent themes throughout the RESOLVE data and claims are made that they have far-reaching implications for those with infertility, their families and society itself. Many of the narratives have examples that demonstrate that infertility can be both discrediting and discreditable. A few speak specifically to the notion of discreditability and these in particular link stigma and infertility with the protective strategies of isolating oneself, of holding infertility out as a secret. There are
98 also ways in which the narratives address mitigating the stigma of infertility. As discussed in Chapter 3, recognition of infertility as a disease and the development of an etiology are key in mitigating stigma as are enacting legislative and insurance protections. 4.2.1. The Interaction of Discredited and Discreditable Identities The RESOLVE data appears to lend credibility to the contention that infertility is both a discrediting and a discreditable characteristic which they use as grounds for many of their claims across the website. Infertility is discrediting in that infertility interrupts the normative life cycle, and this becomes readily apparent through one’s lack of children and family. Breaching this norm is considered a crisis both personally and socially. It is discreditable in that there is a lack of societal awareness as to the causes, trials and tribulations of infertility and the struggle to overcome that condition. Secrecy and silence are tactics employed by those struggling with infertility in order to protect themselves and ward off discrimination. Cahill and Eggleston (1995) refer to this as selective concealment and it is used to ward off “open person” treatment by others (685). “Open persons” are those that can be “addressed at will,” whose condition, its cause and its trajectory are deemed appropriate topics of discussion by others (ibid). However, secrecy and silence contribute to the lack of awareness that is posited as a major cause of the stigma of infertility and childlessness in U.S. society within the RESOLVE data. The interactive nature of discrediting and discreditable identities in this case makes it is difficult to tease out whether these conditions can be strictly labeled as discrediting or discreditable. The interaction of the two features of a stigmatizing identity is also difficult to discern: It appears to be a chicken and egg proposition. Does moving from a
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discreditable identity to a discrediting one rely on claiming an infertile identity and seeking support and benefits? Or, does the stigma of infertility in U.S. society, the lack of awareness about this condition, and the lack of support and resources construct the infertile and/or childless as discredited and, therefore, those with infertility isolate themselves and remain silent in an attempt to pass? In this case, and corresponding to Research Question 1, can infertility be both discrediting and discreditable? The answer in these narratives appears to be yes, it can and often is both. In the narratives that concerned this research question, I found that there are three main sets of actors referred to: the person or couple with infertility, their families, and society writ large. In addition to the general themes of crisis found within these categories, there are also discrete ones. For individuals and couples the major themes are about discrimination, felt, enacted or feared. Within the family category the major theme is the disruption and stress that infertility puts on the extended family as a whole. The major theme that emerged for the actor known as society is the lack of awareness of the condition of infertility. 4.2.1.1. Stigma and Its Implications for the Self For the individual or couple struggling with infertility, the deep-seated desire to have a biological child is cited as being deeply felt--and the inability to fulfill that desire constructs a crisis for sufferers on many levels. Crisis in this context appears to refer to both the magnitude of the problem as well as to the number of problems infertility causes in interactions with others (McNamee & Gergen 1992). According to the RESOLVE narratives, they range from individual crises of identity to job performance to a crisis of
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faith. The desire to parent is fundamental to the human race, and the inability to do so can be devastating. Infertility is a crisis of the body, a crisis of the mind and a crisis of the spirit and calls into question a person’s view of themselves, their life goals, their faith, their relationship with their spouse and with others. Infertility impacts a couple’s general health, their marriage, job performance and social interactions it brings a deep sense of grief and loss. Being denied the blessings of parenthood can also bring on a crisis of faith. These crises are connected to and confounded by the stigma associated with infertility, specifically, and childlessness in general. The texts on the RESOLVE website focus on discrimination as an effect of stigma. Three types of discrimination emerge: felt, enacted, and feared. Here each of the types are employed in examples that emphasize their impact on health care and employment. Recognition of infertility goes back to biblical times. Yet, in the 21st century, it is still stigmatized and misunderstood and the millions afflicted are unable to get the effective care they need to help them to resolve their family building pursuits. Some carriers do not understand infertility as a disease, others classify medically acceptable and successful treatment as experimental and still others perceive the workup and treatment process to be "medically unnecessary." As a result, adequate and consistent infertility coverage eludes many infertile couples. Ms. Hall's physician ordered her to stay in bed for several days after an embryo transfer in 2003; she took about 20 days off, court papers show. The procedure failed and she was approved for a second leave to try again; "my boss knew everything that was going on with me," Ms. Hall says in an interview. But her supervisors singled her out for layoff before the second leave, citing absenteeism for infertility treatments, court papers show.
101 Although the ruling would seem to clear the way for employees to disclose infertility treatment at work, most women keep it secret…a university administrator says secrecy “made it easier for me to just do my job instead of having people wonder if I’m pregnant, wonder if I was going to leave, etc. 4.2.1.2. Implications for the Family The extended family of those struggling with infertility is also profoundly affected. It is a condition that interrupts the family life cycle and that is portrayed as potentially damaging both to the physical and psychological health of the family. Involuntary childlessness is an interruption of the family life cycle….[and is an] obstacle blocking these normal transitions and preventing family members from assuming new developmental roles. However, the extent to which families are affected by infertily is not recognized either. Although infertility is widely acknowledged as a crisis for individuals and couples, it is less recognized as a trauma that impacts their families. Yet, involuntary childlessness is an intergenerational crisis that has the ability to strain, even damage, family relationships over time by impairing communications and interactions. The stress on the family created by this trauma appears to have several causes as well as additional consequences. Perceptions of the normativity of parenthood permeate these narratives and are linked to the distress that infertility causes for the extended family. Here, it is implied that the experience of infertility extends to the parents of the infertile as a parent hasn’t completed their job until a child has a family of their own. In return, children are made to feel responsible for helping the parents achieve this goal as well as provide tangible evidence of its achievement through the production of grandchildren. In this way the infertile individual fails as an adult and as a child which can cause embarrassment and shame when this failure is recognized by others.
102 Infertility may also require family members to re-examine some longheld family beliefs if they cause increased distress. For example, the belief that an offspring is not an adult until he/she is also a parent, or children owe parents grandchildren. A lack of awareness about infertility within families also impacts their distress. Both of these characteristics contribute to the confusion felt by family members as well as stigmatization of the infertile couple by their families. Within their own families, sufferers of infertility may be relegated to receiving “non-person” treatment where family members note the difficulties they are experiencing but look past them and focus on more normative family members and their activities (Cahill & Eggleston 1995:684). Parents faced with their children's infertility are often baffled by this crisis. It is an 'invisible' loss that involves private marital issues, complex medical treatments, and a rollercoaster of emotions. They may know how to support a fertile child, because of their own experience, and may be less clear about their role of support for infertile child. Very often parents of an infertile couple feel caught between their infertile child and their 'fertile', sometimes pregnant, child(ren). Naturally, both offspring may expect to rely on their parents for emotional support at this significant time in their lives. While this is a realistic expectation, many parents may, for a variety of reasons, end up providing more support to the 'pregnant' child than the infertile couple. Sometimes this happens when a parent is more knowledgeable about providing support around pregnancy and parenthood issues than about infertility. 4.2.1.3. Implications for Society Infertility as a condition writ large is also depicted as a crisis for society. The normative condition of a traditional family is stated to be of great import to U.S. society. As such, individuals who are childless are viewed as deviant citizens. The medical
103 condition of infertility is on the rise in the U.S. and this contributes to fears about the childless being lesser economic contributors to society as a whole. Infertility also exacts an enormous toll on society. The social norm in the United States is one that heavily encourages, if not expects, married couples to bear and raise children, and questions the values of couples that do not. More than 7.3 million Americans, or 1 in 8 couples of childbearing age, suffered from infertility in this country in 2002, according to the U.S. Centers for Disease Control and Prevention, more than a 20 percent increase since 1995. “The number of women and men diagnosed with infertility is increasing throughout the world,” Isaacs cautioned. “This health concern has enormous implications for our future economy and for society. It is critical that we respond to this growing public health challenge to family building.” Throughout the website claims are made regarding the lack of resources, particularly the lack of health insurance coverage, available to assist in overcoming infertility: No one expects to receive the diagnosis of infertility. Yet more than 6 million Americans will. No one expects that their insurance company will deny them coverage for this medical condition. But most do. Many of the claims regarding society have to do with the view that there is a general lack of awareness in the U.S. concerning what infertility is, its causes, its prevalence and its effects. A number of passages within this theme concern a survey in which respondents were asked about their knowledge and experience of infertility and which is well cited across the passages through which RESOLVE establishes its own credibility. In this national random sample survey, respondents were asked questions regarding their perceptions of the definition cause, prevalence or costs of treating infertility.
104 "It is shocking to see, in this day and age with 1 in 8 couples of childbearing age in this country battling infertility and more media coverage than ever on reproductive health issues, that so few Americans are aware of how prevalent the disease is in our society," said RESOLVE President and CEO… Only about half the respondents were able to cite the most often used criteria for infertility i.e., not being able to get pregnant after one year of regular intercourse (or six months after a female reaches the age of 35). One cycle of IVF is very expensive. With all of the hype in the news, many people assume that IVF is a sure thing when, in fact, the odds of success for each cycle are low. Most couples cannot afford to try for one month, much less for multiple times. The lack of awareness is purportedly revealed not only through survey results or through expectations built up by the media. It is also exhibited through family and religious expectations associated with holidays and special events. Mother’s Day, in particular, was noted as a prime example of how the lack of awareness affects women with infertility. Their lack of a child is an obvious, discrediting trait. The reason for their childlessness, however, may not be known or recognized. Responses to childlessness, voluntary or involuntary, often comprise either pity or disdain. On Mother’s Day, however, the childless feel chastised, forgotten or ignored. Infertility is a devastating disease all year long, but it can make customary holidays and events like Mother’s Day a difficult experience for so many women struggling to have a baby," said Joan Bowen, executive director, RESOLVE. "Innocent comments from family or friends, remembering your own mother or seeing all of the celebration around you can turn a happy occasion into a deeply emotional day. With all of the activity on Mother's Day, people tend to forget about women who cannot become mothers. Mother's Day is an incredibly painful time for infertile women. You cannot get away from it-There are ads on the TV, posters
105 at the stores, church sermons devoted to celebrating motherhood, and all of the plans for celebrating with your own mother and mother-in-law. Based on these examples, addressing the lack of awareness and its consequences seems a natural turn for the RESOVLE narratives to take—and they do. This is exhibited in their mission statement and in many of the entries where a RESOVLE administrator is quoted. The types of passages challenge the notion that infertility is a private, discrediting and discreditable, matter. Rather, the RESOLVE narratives claim that support of individuals with infertility is paramount and that this support will be accomplished through creating an educated public who are taught that infertility is widespread problem that deserves their time, attention, respect and resources. No one expects to receive the diagnosis of infertility. Yet more than 6 million Americans will. No one expects that their insurance company will deny them coverage for this medical condition. But most do. What we've discovered from this poll is that until Americans — men and women alike — understand the causes and options around infertility, we will be fighting an uphill battle to help them through their situations… The mission of RESOLVE is to provide timely, compassionate support and information to people who are experiencing infertility and to increase awareness of infertility issues through public education and advocacy. These statements create a warrant for RESOLVE in both helping the infertile and their families in dealing with the condition and its effects and also for its advocacy work. 4.2.2. Infertility and Discreditability While many characteristics of a discreditable identity are shared with a discrediting one, being childless, whether voluntarily or not, is not always readily apparent. Nor are the issues and experiences that women with infertility endure always
106 observable by others. In the RESOLVE data there were occasions where it was noted that infertility and its effects can be invisible. The secrecy and isolation that surround this issue contribute to the theme of invisibility and, accordingly, are framed as important factors in maintaining infertility as a private matter—one that is best left in silence for the comfort of ourselves and others. 4.2.2.1 Isolation and Secrecy Isolation, and reasons for it, are part of the personal narrative of infertility that is represented in the RESOLVE data. Those who suffer with infertility have many losses that occur often and that are not necessary visible. These losses can contribute to their sense of isolation—both self and socially imposed. Invisible losses, such as miscarriages, failed medical treatments, or adoptions gone awry, may highlight a family's inadequate means of dealing with problems. Old family issues, jealousies and resentments may resurface or other family struggles, such as parental illness or the pregnancy of a sibling, may take priority over reproductive difficulties, leaving the infertile couple feeling isolated and abandoned. People experiencing infertility often become isolated, and avoid family, friends and social situations involving children and pregnant women. Houses of worship may be a natural source of solace, yet attending services in the midst of laughing children and adoring parents can increase the infertile couple's feelings of sadness and isolation. Secrecy, a selective concealment technique of information management (Cahill & Eggleston 1995) is noted in the narratives as a technique used in order to avoid discussing private topics. As reproduction and, hence, fertility treatments are inherently linked to sex and sexual activity, disclosing participation is deemed somewhat taboo. Because infertility often involves major personal life issues and decisions, it is often experienced as a private matter, and is not ordinarily discussed in public
107 forums. The personal nature of the infertility experience contributes to the failure of society to recognize infertility as a disease thus creating a lack of sound knowledge about infertility. Infertility treatments are very private and embarrassing, which is why many couples choose to undergo these treatments in secret. Many religious and social events revolve around children, and couples without them may feel uncomfortable or left out of activities altogether. Because the topic of infertility involves reproduction, it is an extremely personal problem that couples face. For this reason, it is often a very difficult topic to discuss, even with a trusted rabbi, priest or pastor. The RESOLVE narratives showcase the themes of secrecy and isolation as techniques employed by those who suffer from infertility. This is due to the potential detrimental effects of disclosing an infertile status. Once exposed as being childless due to infertility, they construct themselves as open persons (Cahill & Eggleston 1995) which allows others to comment on their condition, ask inappropriate questions, give unhelpful advice and make hurtful comments. Don't tell your friend that there are worse things that she could be going through. Who is the final authority on what is the "worst" thing that could happen to someone? Is it going through a divorce? Watching a loved one die? Getting raped? Losing a job?... People wouldn't dream of telling someone whose parent just died, "It could be worse: both of your parents could be dead." Such a comment would be considered cruel rather than comforting. In the same vein, don't tell your friend that she could be going through worse things than infertility. One of the cruelest things anyone ever said to me is, "Maybe God doesn't intend for you to be a mother." How incredibly insensitive to imply that I would be such a bad mother that God felt the need to divinely sterilize me…Even if you aren't religious, the "maybe it's not meant to be" comments are not comforting. Infertility is a medical condition, not a punishment from God or Mother Nature.”
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Feelings of guilt are also said to contribute to the silence kept by those who have infertility. Unfortunately, guilt is one of the pervading feelings. You may feel a sense of guilt individually or as a couple. Some of those guilt feelings may go unspoken because of a previous abortion, because you took so long to even begin trying to have children, or because you are convinced that your anxiety and obsession with your infertility may be the cause of it. In one narrative a woman interviewed stated that the only reason she disclosed her treatment was to account for irregularities in behavior. This is one way in which to employ therapeutic disclosure (Schneider & Conrad 1980), as by disclosing her condition she is attempting to mitigate a stigmatized status. The only reason most women disclose the procedure is to explain their absences. Susan Derex Murphy, a Skokie, Ill., teacher, told her school principal about her treatment. Getting to work after early-morning blood tests and sonograms "was always a race against the clock," she says. Sometimes, "I'd come in late or with a bad result and be in tears." As noted in previous sections, according to the RESOLVE data, all of these features of the infertility experience play a role in lack of awareness that prevails in our society. It is claimed that through this lack of awareness societal silence regarding infertility is maintained. One of the most staggering of RESOLVE’s survey findings was that even amid the sharp increase in infertility in the United States, of the 1,000 people polled (500 men and 500 women), more than 66 percent of men and 54 percent of women do not think that they know anyone who is infertile. Isaacs [RESOLVE CEO] states, "While much of this can be attributed to the stigma still assigned to infertility, a lot of responsibility lies in the way in which we, as a society, fear talking about or being associated with the disease. Only about one-fourth of men or women knew infertility was a disease afflicting
109 several million. Most thought it was far rarer, affecting several hundred thousand, and couldn't agree on how the disease is defined. ” 4.2.3. Mitigating the Stigma of Infertility According to the narratives found on the RESOLVE website, infertility is a complex condition with personal, interpersonal, social, medical and legal consequences. It is also a stigmatized condition, both discrediting and discreditable. However, the data do indicate that there are ways in which this stigmatizing condition may be mitigated. For example, recognition that infertility is a medical problem has led courts to rule in favor of plaintiffs seeking protection from discrimination due to their infertility status. Further, state mandated insurance coverage provides access to treatment resources as well as helps to increase in awareness of and understanding about infertility. A number of employers are noted to voluntarily offer insurance benefits for those who require treatment in order to become pregnant. In providing support for employees, RESOLVE claims employer’s recognition provides normalizing attributes to the condition of infertility. Increases in family support are also noted as important here to the mitigation of stigma. 4.2.3.1. Recognition of Infertility is a Disease Recognition of infertility as a disease is important to breaking the isolating and stigmatizing effects that are associated with it. Statistics are used to ground claims that infertility is a disease and that those who suffer from this medical condition are entitled to coverage of treatments costs. Infertility is a disease, and you are not alone. According to The Center for Disease Control and Prevention, more than 7.3 million Americans, or 1 in 8 couples of childbearing age, are infertile.
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Patients deserve insurance coverage. The majority of respondents felt that infertility treatment should be covered by insurance (76 percent of women; 67 percent of men). Further evidence of this recognition, and its mitigating effects, is provided in the article “Women Battling Infertility Backed By Court.” In this piece, state laws mandating insurance coverage of treatments and federal laws that protect employees seeking treatment for medical conditions are both portrayed as features that confirm that infertility is a legitimate medical condition. The ruling expands a trend toward recognizing infertility as a medical problem; 13 states have laws mandating insurance plans to pay for in vitro fertilization, says the Pacific Research Institute, a think tank. Also, more employees are seeking time off for treatment under the federal Family and Medical Leave Act; this law, which entitles covered workers to up to 12 weeks' unpaid time off, may apply in some cases if a doctor certifies the treatment is for a serious health condition. 4.2.3.2. Legislative and Insurance Protections Another way in which the stigma associated with the way infertility is said to be mitigated is said to be through individual women who bring discrimination suits based on lack insurance benefits for infertility treatments. As these cases move through the court system and provide precedents, it appears that both a re-imaging of infertility as a medical condition and a new understanding that those who suffer from infertility are worthy of protection is underway. In the first decision of its kind at the federal appeals-court level, a three-judge panel in Chicago found women who need time off work for infertility treatment may invoke the Pregnancy Discrimination Act as potential protection against adverse action. The ruling came in a case involving Cheryl Hall, a secretary
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who was laid off after taking time off for in vitro fertilization, then asking for more. Without ruling on the merits of her case, the court last month set a precedent by giving Ms. Hall a green light to sue her former employer for pregnancy-related bias.The ruling suggests women will have to worry less about the "repercussions of taking time off for IVF," says Eugene Hollander, Ms. Hall's attorney. A spokesman for Ms. Hall's former employer, Nalco, declined to comment on the case, but it said the company is committed to treating all employees fairly. According to the data, stigma and discrimination appear to be lessened when employers voluntarily provide in-kind benefits for fertility treatments. The reasons employers are said to provide protections for employees is that they wish to appear “family friendly” in order to attract and retain high quality employees. These statements frame infertility as a potential part of a worker’s life course and one that employers recognize as normative. Here it is reported that employers have responded to employees requests to provide insurance coverage for fertility treatments: The survey revealed that the two most common reasons employers provide infertility treatment coverage is to ensure employees have access to quality, costeffective care (75 percent of employers who offer infertility treatment) and to be recognized as a family-friendly employer and attract and retain valued employees (72 percent). In addition, 65 percent of employers offering infertility treatment cited responding to employee requests as a primary objective for covering infertility benefits. And here it is noted that the costs of providing coverage are well worth the price in public relations value with employees and in the market: These employers indicate that the benefits far outweigh the costs, which have been relatively negligible. Infertility coverage has proven to be a wise business decision for these companies and we hope their experiences will send a powerful message so that other companies and their employees will benefit.
112 4.2.3.3. Increases in Social Support As with other life crises, social support is purported to lessen the stigmatizing effects of infertility. Increases in social support by friends and family are considered a key to mitigating felt stigma as is the work done by advocacy and support groups such as RESOLVE. The family experience of infertility also has the potential to bring out the best in the family system, promoting growth and well-being for the members. Some families faced with infertility grow closer and find ways to provide support, compassion, and understanding in the midst of the maelstrom of profound loss and despair. These families are able to handle the myriad of negative emotions of infertility, and weather the pain of its many losses. They acknowledge the despair of this unique loss and its impact on the family as a whole, not simply on the individual or couple. Family members listen, openly communicate warmth and compassion, and ask for what the couple wants or needs during the infertility journey. And, they are willing to provide support in a variety of ways… RESOLVE also provides grounds for its place in providing social support to those with infertility: RESOLVE is committed to providing support and education to the increasing number of people struggling with infertility and promoting accessible treatment, insurance and adoption options for those with this disease. The themes that emerge within this section are that there is a biological imperative for producing children on the individual, groups and societal level. Further, there is a lack of understanding about infertility, its causes and its experience, even by those closest to its sufferers. This serves to construct a crisis on many levels. In deviating from this imperative, those with infertility are said to either keep silent and suffer alone or disclose their condition and open themselves up to open or non-person treatment-either through expectations by others to answer any and all questions about their
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condition, questions about their value to the family or society, or through outright disregard or rejection by others. Mitigating the stigma of infertility appears to be possible through the medicalization of the condition that can be used to construct social support and lead to legal protections for those who wish to seek treatment. In all cases, RESOLVE promotes itself as an agent of support and change creating a warrant for its continuing importance in the lives for whom they advocate. 4.3. Constructions of Infertility as a Disability 4.3.1. Narratives of Similarity: Constructing Infertility as a Disability According to the Americans with Disabilities Act of 1990, disability is defined in the following manner: Sec. 12102. Definitions (2) Disability The term "disability" means, with respect to an individual (A) a physical or mental impairment that substantially limits one or more of the major life activities of such individual; (B) a record of such an impairment; or (C) being regarded as having such impairment. (United States Code 42:126:12102) This definition, and as constructed on the RESOLVE website there are many ways in which infertility is a disability. While RESOLVE never makes this claim explicitly, their claims concerning the medicalization of infertility follow this definitional template. The first step in recognizing a condition as a disability is that medical practitioners recognize it as a disease or medical condition. Infertility is represented as a medical condition that like other forms of disability is considered a life crisis involving loss or impairment of biological functions considered vital in fulfilling normative social roles and participating
114 in major life activities. The ensuing physical and psychological pain that occurs is similar in nature to the pain of those who suffer other types of disabilities. Further, the deviant nature that those who suffer from infertility are purported to possess is said to lead to a level of discrimination that requires special legal protections. 4.3.1.1. Constructing a Legitimate Medicalized Identity According to the RESOLVE data, medical practitioners have long recognized infertility as a medical condition (Family and Friends). However, like the conditions of fibromyalgia and chronic fatigue syndrome there remains the common misnomer that infertility is caused by emotional and/or psychological dysfunctions. One of the ways that RESOLVE seeks to rewrite this narrative is through presenting information to readers through the device of contrasting myths and facts about infertility: “Myth: It's all in your head! Why don't you relax or take a vacation. Then you'll get pregnant! Fact: Infertility is a disease or condition of the reproductive system. While relaxing may help you with your overall quality of life, the stress and deep emotions you feel are the result of infertility, not the cause of it. Improved medical techniques have made it easier to diagnose infertility problems.” The loss or impairment of the physical function of reproduction is also an important theme in RESOLVE’s construction of infertility as both a medical condition and as a disability. They present a definition of infertility as follows: Infertility is a disease or condition that results in the abnormal functioning of the male or female reproductive system interfering with the ability to achieve a pregnancy or of a woman to carry a pregnancy to live birth. The duration of the failure to conceive should be 12 or more months before an investigation is undertaken, unless medical history, physical findings or age dictate earlier evaluation and treatment.”
115 To uphold their own definition of infertility, they also provide definitions from prospective legislation. The following definition is cited from the HR 697: the 2009 House of Representatives version of the Family Building Act: INFERTILITY DEFINED.— For purposes of this section, the term ‘infertility’ means a disease or condition that results in the abnormal function of the reproductive system, which results in— (A) the inability to conceive after 1 year of unprotected intercourse, or (B) the inability to carry a pregnancy to live birth. Explanations of the loss of physical functions as well as social ones also are presented as evidence of the far-reaching impact that infertility has on those who are afflicted. In the section “Hidden No More,” infertility is represented as a “major life crisis” that involves losses that extend past the experience of physical dysfunctions. This theme is seen widely across the website as evidenced by the following passages: Infertility can be a major life crisis. The infertility experience involves many hidden losses for individuals, their loved ones, and society as a whole, including: Loss of the pregnancy and birth experience; Loss of a genetic legacy and loss for future contributing citizens of the next generation; Loss of the parenting experience; Loss of a grand-parenting relationship; Loss of feelings of self-worth; Loss of stability in family and personal relationships; Loss of work productivity; Loss of a sense of spirituality and sense of hope for the future” Infertility as a medical and emotional crisis with a wide variety of losses, disappointments and 'costs': physical, financial, social, marital.” Infertility is a crisis of the body, a crisis of the mind and a crisis of the spirit and calls into question a person’s view of themselves, their life goals, their faith, their relationship with their spouse and with others.” Involuntary childlessness is an intergenerational crisis that has the ability to strain, even damage, family relationships over time by impairing communications and interactions.”
116 Infertility also exacts an enormous toll on society. These passages are important in narrative constructions of infertility as a disability. This is because in order to be considered a disability as defined by the ADA, a condition must interfere with a major life activity. In stating the broad influence that infertility has on individuals is one way in which to form the argument that the disruption of human sexual reproduction constitutes interference with a major life activity. Further, reproduction is not only important for individuals and families it also impacts society and grounds a claim regarding the perpetuation of the human species. Family building is a developmental stage that represents generativity or fostering the next generation. “HR 697 (S.1) states that: A fundamental part of the human experience is fulfilling the desire to reproduce.” “The desire to parent is fundamental to the human race, and the inability to do so can be devastating.” In this way, the RESOLVE data indicate that reproduction meets the standard of that definition. To further uphold this case, those who suffer with infertility are said to experience a confluence of physical and psychological pain--like those who suffer from other types of disabilities (McQuillan et al., 2002; Loftus 2004; Rajkhow, McConnell & Thomas 2005; Sternke 2005). 4.3.1.2. Narratives of Pain Although there are many types of physically taxing treatments associated with infertility the physical pain women experience from these treatments differs from the social pain associated with infertility in that it has a plethora of bodily effects which can
117 include mood swings, abdominal and pelvic pain, nausea, and vomiting. Hyperstimulation of the ovaries can lead to fluid build-up in the abdomen, chronic over ovulation, chronic over secretion of hormones and the potential for ovarian and uterine cancers. Within the RESOLVE data, it is mainly cited as the pain and discomfort associated with hormone treatment. This may be due to the fact that this is the most common form of treatment and that it is used at all levels of treatment. Hormones can be used as a primary treatment themselves and are also prescribed as part of all invasive treatments including in vitro fertilization. It could also be that the most extreme reactions occur from the hormones. The injectable series of treatments are noted for being extremely taxing on a woman’s biochemistry and can cause severe mood swings. Undergoing IVF treatments is very rigorous. The woman must inject shots into her thigh daily to cause her ovaries to superovulate. The drugs used are very taxing on the woman, and they can cause her to be become extremely emotional.” Severe mood swings are usually viewed as damaging to one’s credibility to others as well as to oneself. When we can’t count on ourselves, or our bodies, to function in a reliable manner it also affects our psychological well-being. The psychological pain of managing an infertility diagnosis has been well documented (Greil 1991a, 1991b, 2002; McQuillan et al. 2002; Loftus 2004; White & McQuillan 2006). It is noted as affecting self-esteem and self-efficacy as characterized in the following passage: Infertility has a strong impact on self-esteem. Suddenly your life, which may have been well planned and successful, seems out of control. Not only is the physical bodynot responding as expected but it feels as if your entire life is on hold. Grief and ensuing depression are also key themes in regards to the pain felt by those who experience infertility. While the psychological pain of infertility may mirror
118 that of those who experience other devastating diseases and conditions, these narratives indicate that infertility is particularly distressing as attempts to overcome its effects are experienced every month in which a woman has a menstrual cycle. Facing the disappointment of not becoming pregnant month after month can lead to depression. Studies have shown that infertility depression levels can rival those of cancer. Although this condition is rarely physically life threatening, it can be devastating to a person's sense of hope. Couples often endure monthly cycles of emotional roller coaster rides, ranging from optimism to despair and depression. Infertility sometimes lasts for years and people often go through this experience in isolation, as their desire for a larger family remains unfulfilled.” The loss of a potential child through miscarriage or ineffective embryo transfer is also unique to the case of infertility and could be considered a further disabling effect. This grief, also known as chronic sorrow, is often associated with the grief parent’s are documented as feeling when they have a child with a disabling condition (Burke et al. 1999; Mayer 2001; Ferguson 2002) Infertility is, indeed, a very painful struggle. The pain is similar to the grief over losing a loved one, but it is unique because it is a recurring grief. When a loved one dies, he isn't coming back. There is no hope that he will come back from the dead. You must work through the stages of grief, accept that you will never see this person again, and move on with your life. For these reasons, infertility is portrayed here as a medical condition with far reaching repercussions throughout their lives. Infertility impacts a couple’s general health, their marriage, job performance and social interactions it brings a deep sense of grief and loss.
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4.3.1.3. Deviance, Discrimination and Protection Another way in which infertility appears as similar to a disability ties in with the medicalized portrayals of it. Like those with other types of acknowledged impairments, the infertile are portrayed as deviant. Here, as is often the case within these narratives, the deviance of the infertile has to do with the U.S. emphasis on family—particularly biological family. In this instance, the question of the values of the couple themselves are questioned. The moral imperative for childbearing, the mother/parenthood mandate, is implied as reason enough for a couple to have children (as noted by Russo 1976; Letherby 1999; Mueller & Yoder 1999). The social norm in the United States is one that heavily encourages, if not expects, married couples to bear and raise children, and questions the values of couples that do not. And, like other forms of serious impairment, seeking treatment for infertility can be a time consuming endeavor which does not conform well to U.S. employment expectations. The moral imperative (as defined by Ibarra & Kitsuse 2006) to bear children can lead to discriminatory repercussions, enacted stigma for women and is at odds with ideal worker norms. Women workers already are purported to be especially at risk in not conforming to these norms. The added pressure that infertility and treatment place on women workers is noted across these documents as an impetus for discrimination. For women struggling with infertility, the unpredictable and time-consuming treatment process can wreak havoc with work schedules, causing conflicts with bosses and triggering reprisals or layoffs.
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Due to the potential for discrimination that those with infertility may encounter, RESOLVE narratives outline how existing protective acts are employed to offer protections for treatment seekers. In the article “Women Battling Infertility Backed by Court,” the Pregnancy Discrimination and Title VII of the Civil Rights Act of 1964, which provides protection against sex discrimination, are cited as examples of existing legislation that serve to construct infertility treatment seekers as a protected class of individuals. In this narrative, we learn the story of a woman whose employer laid her off from her job claiming excessive absenteeism. …a federal appeals court has come down on the side of women, fortifying legal protections on the job…a three-judge panel in Chicago found women who need time off work for infertility treatment may invoke the Pregnancy Discrimination Act as potential protection against adverse action. Courts in other cases have held that because both men and women experience infertility, sex-bias protections don't apply. In this case, the court held that because only women undergo time-consuming in vitro fertilization, they may be protected by sex-bias law. Treatment for men usually takes less time. It is suggested that use the Family and Medical Leave Act would offer job protection for treatment seeking—at least for those who can afford to take unpaid leave of absences—and would mitigate fears of reprisals. …the Pacific Research Institute…[notes that] employees are seeking time off for treatment under the federal Family and Medical Leave Act; this law, which entitles covered workers to up to 12 weeks' unpaid time off, may apply in some cases if a doctor certifies the treatment is for a serious health condition. Recently, new federal acts under consideration would offer special protections for those struggling with infertility. First introduced in 2005, the Family Building Act, is
121 characterized as a comprehensive piece of legislation that would demand that insurers offer coverage for all assistive reproductive technologies. The bill introduced in Congress by Rep. Weiner — HR 735, the Family Building Act of 2005 — addresses the insurance coverage issue. "A person's wealth should Not determine whether or not they can afford to conceive a child," said Rep. Weiner. "My legislation will require health insurance providers to include testing and treatment of infertility. The results of this survey confirm that the high cost of treating infertility and poor health coverage hinder people's ability to receive proper care." The Family Building Act (S.1258)…will ensure that women and men who suffer from infertility can afford the cost of advanced high-tech treatments. The legislation requires insurance carriers to provide benefits for the highly effective ART treatments such as in vitro fertilization (IVF) and Intracytoplasmic Sperm Injection (ICSI). In promoting treating infertility like a disability, by providing protections and accommodations, RESOLVE constructs a storyline that turns from despair and begins to look hopeful for infertility suffers; hope that treatment will be accessible, affordable and effective. Rep. Johnson noted, "…as in so many other areas, we are finding out that if something is insured, often you can handle it in a way that is less costly in terms of dollars, and far less costly in terms of human suffering and deprivation. So it is time that we begin to talk about this with the insurance companies and the way we talk about that is through legislation of the type introduced by my colleague, Representative Weiner. RESOLVE endorses state and federal legislation that will require insurers to cover the costs of appropriate medical treatment. RESOLVE believes the option to pursue medical treatment for infertility must be available to all those who need treatment, not solely those with the resources to pay for the treatment out of pocket. Decisions made during infertility treatments must be strictly medical decisions, not financial ones removing the financial barriers to treatment will result in safer outcomes for women and their offspring.”
122 Joseph C. Isaacs, CAE, REOSLVE President and Chief Executive Officer [stated that] “insurance coverage for infertility treatment promotes effective disease management practices and improved quality patient care. In advocating, even implicitly, in favor of the social construction of infertility as a disability, it is claimed that women will have better access to care and coverage of treatment costs as well as workplace accommodations. This grounds claims that this status would mitigate fears of employers in supporting women workers as they struggle to maintain balance among their roles, and, thus, deter discriminatory practices. 4.3.2. Narratives of Difference: Infertility as a Unique Case Of Impairment One of the ways that infertility is said to be unlike a disability is that there are a large number of people affected but for whom disability status, and the possibility of protections under disability law, remains elusive. This theme is prevalent across the RESOLVE website which constructs infertility as a condition that is a pervasive and growing problem in the U.S. Infertility affects 6.1 million people in the United States. This figure represents 1 in 10 couples in which the woman is of reproductive age. This very significant number demonstrates that infertility affects a large percentage of our population. Couples in their most active and productive years are distracted by the physical and emotional hard ships of the disease.” …prevalence of infertility, a disease affecting 7.3 million people in the U.S., according to new data from 2002 that will be soon be released by the Centers for Disease Control and Prevention (CDC). This represents a significant increase in infertility in the United States; the last CDC data, in 1995, identified 6.1 million infertile Americans.” In the U.S., it is expected that medical treatment will be employed to alleviate impairments—especially those that are disabling. However, another prevailing theme in
123 the RESOLVE narratives is that infertility treatments are usually not covered by health insurance and that this is an unexpected and unwelcome revelation. These themes are employed by RESOLVE as grounds in calling for these structural changes. 4.3.2.1. Difficulties in Medicalizing Infertility One of the reasons that dissenters have cited against constructing infertility as a disability is that infertility is a process one goes through and not a one time experience. Infertility is a complex condition for which there is often no single diagnosable cause or etiology (Whiteford and Gonzalez 1995). This is problematic in that in providing diagnoses, health care providers tend to consider symptoms as individual events and diagnosis of a direct cause of infertility can be difficult. In addition, a diagnosis of infertility can be contingent on the diagnosis of another medical condition such as polycystic ovarian syndrome or endometriosis. As with the overarching condition of infertility, the RESOLVE narratives stress the prevalence of these medical conditions as well as the difficulty in diagnosis. Most women with PCOS don't even know they have it. Less than 25 percent of women with PCOS have actually been diagnosed, largely because women and their health care providers tend to look at the wide variety of symptoms individually rather than collectively. Most women are never officially diagnosed until they begin struggling with infertility and seek help in getting pregnant.” An estimated three to five million American women of reproductive age suffer from endometriosis. This disease is prevalent in women 30-40 years of age, though it can begin in the late teens and early twenties. About 40% of patients with endometriosis will experience some degree of infertility.” To further complicate the issue that infertility has a variety of causes is the fact that there is a wide range of treatment options available. Like other medical conditions,
124 doctors usually begin treatment with the least invasive option that is appropriate for the patient. Once these options are exhausted there are a number of other more invasive treatments to choose from, including: Types of assisted reproductive technology include in vitro fertilization, gamete intrafallopian transfer, zygote intrafallopian transfer, embryo cryopreservation, egg or embryo donation, and surrogate birth. And with the wide range of causes and treatments there exists a wide range of choices to be made regarding treatment. Unlike other medical conditions, where treatment choices strictly affect the health of the patient themselves, there are times that infertility patients must make difficult decisions regarding the health and well-being of their potential children. In so doing, raising further questions regarding the morality of the infertile and infertility treatment. Ironically, couples who undergo IVF to become parents may have to selectively abort one or more fetuses if multiple eggs are fertilized. Many couples cannot bring themselves to abort a baby when they have worked so hard to become parents. If the couple chooses not to selectively abort, they run the risk of multiple births. This also leads to difficulty in medicalization as fertility treatments, particularly more aggressive ones, as they are lumped together with other reproductive biomedical issues (i.e. abortion, cloning and embryonic stem cell research) for which there are moral objections (Overall 1994; Pennings 2000; Dolgin 2006; Svendsen & Koch 2008). Further complicating defining infertility as a medical problem are the myths surrounding it. A persistent myth cited in the RESOVLE narratives is that infertility isn’t a medical condition—that pregnancy will occur on its own in time.
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Myth: Don't worry so much -- it just takes time. You'll get pregnant if you're just patient.Fact: Infertility is a medical problem that may be treated. At least 50% of those who complete an infertility evaluation will respond to treatment with a successful pregnancy. Some infertility problems respond with higher or lower success rates. Those who do not seek help have a "spontaneous cure rate" of about 5% after a year of infertility.” 4.3.2.2. Infertility Suffers: A [Relatively] Unprotected Class The contention over whether infertility is a medical condition contributes to differentiating infertility from disability. For those with recognized medical conditions and disabilities, access to insurance coverage, whether through public or private sources, is assumed as is access to treatment. It is asserted that those who are infertile are unlikely to have either. Insurance coverage for infertility has traditionally fallen into a "gray zone." Some carriers do not understand infertility as a disease, others classify medically acceptable and successful treatment as experimental and still others perceive the workup and treatment process to be "medically unnecessary.” Health insurance guarantees that an individual will not have to bear the entire burden of his/her health care expenses. But in the case of infertility, the cost of treatment for the majority of those touched by the disease, is borne exclusively by the patient. Further, a putative lack of coverage leads to a lack of treatment options; The exception being those that can afford to pay for treatment out-of-pocket with claims that this leaves the vast majority of those with infertility without recourse as depicted in the following passages. The claims are framed in several ways: first, a statement from the executive director is employed; second, the claims are grounded in statistics from a national survey; third, research regarding low coverage levels are provided; and, finally, a statement regarding the lack of state mandated coverage.
126 Barbara Collura, Executive Director for RESOLVE. “A recent RESOLVE poll shows that the lack of insurance coverage kept 63 percent of people who suffer from infertility from seeking proper treatment.” According to RESOLVE, when timely and appropriate infertility treatment is accessed, 70-80 percent of those provided the necessary care will achieve a successful outcome. However, because of the cost barriers and lack of insurance coverage to defray these costs, it is estimated that about half of those afflicted with infertility fail to obtain this care. Infertility treatment is an important aspect of reproductive health care, yet only 1/4 of all health plan sponsors with at least 10 employees provide some level of coverage for infertility treatment.” The majority of group health plans do not provide coverage for infertility therapy. Currently only 15 states require insurance coverage for infertility treatment, and laws vary widely. Another set of narratives relates the high cost of treatment, low levels of insurance coverage and the uncertainty of outcomes with treatment to adoption. Adopting a child provides a unique treatment alternative--while an expensive one. Medical treatments are generally designed to restore bodily functions. For example, hearing can be supplemented or restored through the use of medical devices such as hearing aids and cochlear implants. Mobility can be restored through joint replacement or the use of prosthetic limbs. Adoption is a treatment option that replaces the need for the function of the person’s body altogether creating yet another loss for those struggling through this process. And there are the financial considerations in choosing a treatment plan versus adoption. The adoption process can be a difficult and costly one and yet one that generally does result in the addition of child to a family. The availability of this option is
127 another reason that it is sometimes difficult for others to understand the importance of access to coverage. One cycle of IVF is very expensive. With all of the hype in the news, many people assume that IVF is a sure thing when, in fact, the odds of success for each cycle are low. Most couples cannot afford to try for one month, much less for multiple times. Considering that it also costs a significant amount of money to adopt a baby, many couples opt for the "sure thing" rather then risking their money on much lower odds. Other ways that infertility is unlike a disability is that it is disrupts part of the normative life cycle. Rather than attempting to return a person’s hearing or mobility to a normative condition for a long period of time, over the long-term infertility treatment is designed to briefly overcome a condition. However, in only briefly overcoming this condition, the birth of a biological child provides an opportunity for a normative family life where ongoing explanations regarding another set of biological parents is made unnecessary. Overcoming the infertility obstacle provides both the individual and their family the biological connection that remains so fundamental to our social and cultural acceptance. Involuntary childlessness is an interruption of the family life cycle…It is a life cycle stage in which each and every member of the family transitions from one developmental stage to another, and in the process assumes new roles and new role responsibilities …Infertility is the obstacle blocking these normal transitions and preventing family members from assuming new developmental roles.” 4.3.2.3. Grief of Infertility is Unique Because the infertility experience has unique features, such as the lack of a unifying etiology, limited access to treatment resources for most and its far-reaching
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impact on sufferers and their families, it is said to be that those with infertility are portrayed as experiencing a unique type of grief and loss when the birth of a child is not accomplished. Literature on chronic grief or sorrow appears to uphold this contention (Burke et al. 1999; Mayer 2001; Ferguson 2002; White & McQuillan 2006). Parents and caregivers are reportedly more likely to experience chronic sorrow than those with an illness or disability themselves. This makes infertility a unique case: the infertile experience is both the pain of a disability and the pain of not becoming a parent on a chronic basis. Infertile people grieve the loss of the baby that they may never know. They grieve the loss of that baby who would have had mommy's nose and daddy's eyes. But, each month, there is the hope that maybe that baby will be conceived after all. No matter how hard they try to prepare themselves for bad news, they still hope that this month will be different. Then, the bad news comes again, and the grief washes over the infertile couple anew. This process happens month after month, year after year. It is like having a deep cut that keeps getting opened right when it starts to heal. Although this condition is rarely physically life threatening, it can be devastating to a person's sense of hope. Couples often endure monthly cycles of emotional roller coaster rides, ranging from optimism to despair and depression. [Infertility] sometimes lasts for years and people often go through this experience in isolation, as their desire for a larger family remains unfulfilled. Herein, infertility is constructed as a painful condition, physically, psychologically, emotionally, and socially/morally, from which large numbers of people suffer. The grief that infertility sufferers are said to experience is presented is complex and unique. The narrative claims are that these are powerful reasons for infertility to be labeled a disability. In order for this to occur, a more nuanced medical definition is
129 required and an acknowledgment that infertility interferes with the major life activity of reproduction is required. And, RESOLVE calls for protections to be put in place in order support the infertile. 4.4. Narratives of Possibility: Implications of Self-Labeling as Disabled 4.4.1. Personal Implications According to the RESOLVE narratives, the construction of infertility as a disease is viewed as a positive change for individuals as it provides a basis for making claims on resources. And, while the RESOLVE data is organizational, inferences can be made about how self-labeling as disabled might affect women with infertility as individuals and as a group. In claiming a medically diseased status, women may be able to ease the effects of self-doubt as well as the financial burden of fertility treatment. Defining infertility as a disease or medical conditional under these acts also appears to have the potential to effect perceptions of infertility and in turn the potential for a reduction in individual women’s felt and enacted stigma—especially when the mandates cover infertility as any other health or pregnancy related condition. RESOLVE presents summaries of these mandates from fifteen states. Many of the descriptions of state mandated coverage note that all group insurers and HMOs (health maintenance organizations) must provide infertility services as part of either “basic health care services” or part of a maternal benefits plan. All individual and group insurance policies that provide maternity benefits must cover in vitro fertilization (IVF). (Arkansas) Insurers and HMOs that cover pregnancy benefits, must provide coverage for medically necessary expenses of diagnosis and treatment of infertility. (New Jersey, Rhode Island)
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Requires HMOs to cover infertility services as part of basic health care services. (Ohio, Montana, West Virginia) The primary description of the mandate for the State of Illinois is an example of how grounds are provided for what types of treatment should be available and paid for by insurers and employers: Group insurers and HMOs that provide pregnancy related coverage must provide infertility treatment including, but not limited to: diagnosis of infertility; IVF; uterine embryo lavage; embryo transfer; artificial insemination; GIFT; ZIFT; low tubal ovum transfer. These narratives imply that there are protections available in these states for those who wish to seek infertility treatment. However, the texts also indicate that self-labeling in order to gain access to these benefits increases other burdens. This can be characterized as type of ‘process is punishment’ wherein there is limited chance for success in gaining outside resources and yet attempts to receive access to them takes a great deal of time and effort on the part of the person seeking them (Feeley 1992[1979]. 12 Further, as a universal definition for infertility is not found within the state law summaries and exceptions, cap limits and constraints on treatment vary widely. Therefore, the potential for lessening despair and stigma goes hand in hand with an increase in the amount of unpaid labor necessary in order to comply with the rules and
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In part of Feeley’s (1992[1979]) work, he describes the pretrial process and claims that the length of pre-trial detention, for those who can’t afford bail, along with the many hoops that defendants must jump through have become more of a punishment than are the oft times plea bargained judgments.
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regulations set out in the legislation. The texts concerning coverage limitations are more extensive and detailed. The following are prime examples and provide insight into how heightened hopes for protection may be dashed when reading the fine print. In defining who is eligible to receive coverage and what types of treatments are mandated states are purported to place several types of constraints and limitations on these mandates. Some states limit warrants for coverage by age. New York state mandates coverage for a wider range of patients with limits from 21 to 44 years old. The State of Connecticut requires individual and group insurers to provide coverage to individuals under the age of 40.The State of New Jersey requires women to be over the age of 35 but under the age of 46. Further, coverage is warranted if: a male is unable to impregnate a female; a female under 35 years of age is unable to conceive after two years of unprotected sexual intercourse; a female 35 years of age and over is unable to conceive after one year of unprotected sexual intercourse; the male or female is medically sterile; or if the female is unable to carry a pregnancy to live birth. Must be less than 46 years of age. (New Jersey) Others states also limit eligibility for coverage based on a documented history for a specific time period. Infertility means the condition of a presumably healthy individual who is unable to conceive or sustain a successful pregnancy during a one-year period. (Connecticut, Massachusetts) The law abides by the ASRM definition of infertility. ASRM defines infertility as the inability to achieve a pregnancy after trying for 12 months if you are under 35 and 6 months if you are over 35. (New York) The patient and her spouse must have at least a 2-year history of unexplained infertility (Arkansas, Maryland)
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Individual and group insurers are required to cover one cycle of IVF if a patient or patient’s spouse has at least a 5 year history of infertility. (Hawaii) In lieu of a history over a period of time, proof of certain types of conditions may be used by individuals in order to warrant coverage: OR the infertility must be associated with at least one of the following: endometriosis; DES exposure; blocked or surgically removed fallopian tubes that are not the result of voluntary sterilization; abnormal male factors contributing to the infertility. (Arkansas, Hawaii) Still others limit the numbers and types of procedures that must be covered. Requires group insurers to offer coverage of infertility treatment, except IVF. Does not include IVF. (California) One cycle of IVF. The patient’s eggs must be fertilized with her spouse’s sperm. (Hawaii, Maryland) Insurers are not required to cover (but are not prohibited from covering) experimental infertility procedures, surrogacy, reversal or voluntary sterilization or crypopreservation of eggs. (Massachusetts) Excludes coverage for IVF, GIFT, and ZIFT; reversal of elective sterilizations; sex change procedures; cloning or experimental medical or surgical procedures. (New York) And even the type of facility is defined: Requires infertility treatment or procedures to be performed at facilities that conform to the American Society of Reproductive Medicine and the Society of Reproductive Endocrinology and Infertility Guidelines. (Connecticut, Hawaii, Maryland) In contrast, a few states do exempt HMOs, small businesses and self-insured employers from these mandates: HMO’s are exempt from the law (Arkansas)
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Employers who self-insure are exempt from the requirements of the law….(Arkansas, Connecticut, Hawaii, Maryland, Massachusetts, Montana, New York, Texas) Employers may choose whether or not to include infertility coverage as part of their employee health benefit package… (California, Texas) Employers with fewer than 50 employees do not have to provide coverage. Employers who self-insure are exempt from the requirements of the law. (Maryland) Lifetime maximums are also employed to limit the strength of the mandates: Lifetime maximum of $15,000 for coverage. (Arkansas) Lifetime maximum coverage of 4 cycles of ovulation induction. Lifetime maximum coverage of 3 cycles of intrauterine insemination. Lifetime maximum coverage of 2 cycles of IVF, GIFT, ZIFT or low tubal ovum transfer, with not more than 2 embryo implantations per cycle. (Connecticut) Lifetime maximum of $100,000. (Maryland) Interestingly, a number of states exempt religious organizations from coverage mandates: Does not require religious organizations to offer coverage. (California, Connecticut, Maryland, New Jersey, Texas) RESOLVE also provides a list of potential pitfalls for treatment seekers and urges them to do in-depth research on their insurance coverage: Learn whether your employer plan is fully insured or self insured. Fully insured plans follow state law. Self insured plans follow federal law and are exempt from state law. Learn if your employer plan is a "greater than 25" plan, "greater than 50" plan, etc. In these cases, employers with fewer than a set number of employees do not have to provide coverage. Learn if your employer's policy was written in the goverened state. Generally, the policy must be written and/or reside in the state that has an infertility coverage law.
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Learn if your employer offers more than one plan. If so, investigate which are fully insured plans in the state with an infertility coverage law. The implications of self-labeling as disabled in this instance at first appear positive—that in self-labeling those with infertility, women in particular, are positioning themselves as deserving of access to treatment and assistance in paying for that treatment. However, when examining the multiple social and structural constraints on this opportunity, the potential for disappointment that women may experience in dodging these roadblocks, for rejections and entrenchment of felt and enacted stigma, is high. The literature on disclosing HVI and mental health statuses, and is elaborated on in the stigma literature (for example, see Schneider & Conrad [1980]1992 on concealment versus disclosure) suggest that this does occur in other settings (Link et al. 1997; Phelan, Bromet & Link 1998; Derlega 2002; Kang et al. 2005). Still, to date the infertility literature has not addressed this notion—which may not be surprising as explicit reference to infertility as a disability and cases of discrimination are not discussed on sites like RESOLVE. 4.4.2. Social and Cultural Implications As noted in the previous section, the RESOLVE texts indicate that self-labeling in cases where infertility is considered a medical condition may decrease felt and enacted stigma and increase access to resources. They also imply that in a critical mass of individuals who self-label as infertile, including those who participate in RESOLVE, have developed in order to call for this change. This is seen through the emphasis that the RESOLVE places on the recognition of infertility as a disease and that link to changes, and prospective changes, in state and federal laws concerning insurance
135 coverage of treatments. The Family Building Act of 2009 is cited widely across the RESOLVE site in both the House and Senate versions (HR697 and S1258, respectively). RESOLVE claims to support these bills for several reasons, including: 1) the bills provide a universal, legal definition of infertility; 2) they recognize the need for health insurance coverage for infertility sufferers; 3) employers who provide obstetrical coverage would be required to cover fertility treatments; and 4) these stipulations provide social legitimacy to the view that the disruption of the reproductive life cycle is a disruption of a major life activity: and key characteristic in defining a disability. INFERTILITY DEFINED.— For purposes of this section, the term ‘infertility’ means a disease or condition that results in the abnormal function of the reproductive system, which results in— (A) the inability to conceive after 1 year of unprotected intercourse, or (B) the inability to carry a pregnancy to live birth. Through advocacy and legislation personal troubles become public issues. Therefore, RESOLVE also produces texts endorsing allocation of research dollars to biomedical research that further enforces the public recognition of both infertility and assisted reproductive technologies: RESOLVE endorses the highest possible allocation of federal dollars and strong, sustained resources for health programs under the jurisdiction of the House and Senate Labor-HHS-Education Appropriations Subcommittees. These programs are where vital biomedical health research takes place, research that in turn guides community-based prevention and health promotion programs as well as specific treatment protocols that benefit our nation’s patient populations. 4.5. Summary Analysis of the RESOLVE data provides a unique entrée into our understanding of the social construction of infertility. It is portrayed as both discrediting and discreditable and
136 whose sufferers must either conceal their condition or be the brunt of open or non-person treatment. This can occur in many settings but this data focuses on situations that occur within groups, either within the family, workplace or place of worship. A biological imperative for producing children on the individual, groups and societal level is claimed to be at the root of much of this treatment. The RESOLVE narratives indicate that the lack of understanding about infertility, its causes and its experience, further serves to construct it as a crisis on many levels. Mitigating the stigma of infertility appears to be possible through the medicalization of the condition that can be used to construct social support and lead to legal protections for those who wish to seek treatment. While there is no explicit evidence that RESOLVE actively advocates for labeling infertility as a disability, the structure of the narratives appears to employ the ADA definition of disability throughout. To reiterate, infertility is constructed as a painful condition, physically, psychologically, emotionally, and socially/morally, from which large numbers of people suffer. The grief that infertility sufferers are said to experience is presented is complex and unique. The narrative claims are that these are powerful reasons for infertility to be labeled a disability. In order for this to occur, a more nuanced medical definition is required and an acknowledgment that infertility interferes with the major life activity of reproduction is required. And, RESOLVE calls for protections to be put in place in order support the infertile. In all cases, RESOLVE promotes itself as an agent of support and change creating a warrant for its continuing importance in the lives for whom they advocate. In the upcoming chapter, these narratives continue although they explicitly address the notion of infertility as a disability. Felt and enacted stigma, concealment and
137 disclosure, pain and healing, values and morals are all addressed through the lens of court cases, legislation (past and present) and arguments by the authors for and against such a construction. The RESOLVE data provides an introduction to the sociolegal ramifications of infertility but does so from a position of advocating for individual rights. The law reviews take us to another level, framing infertility as a foundational issue in understanding women’s rights in the workforce, continued workplace disparities for women as a class of people, and equal rights for women as a whole.
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CHAPTER 5. CONSTRUCTING THE INFERTILE AS A PROTECTED CLASS: LAW REVIEW NARRATIVES 5.1. The Import of Law Reviews as Narrative Data Law review articles are an important data source for this project as they often focus on notions of who deserves governmental protections, on both moral and legal grounds, how the protected class is defined and when those protections are endorsed. Specifically within these narratives, case law is reviewed and discussed and legal scholars develop their own arguments for the applicability of legal precedents as to how the American’s with Disabilities Act (ADA) of 1990 has been interpreted and, in some cases, its applicability to the case of infertility. As stated in Chapter 2, law review articles are usually singly authored and can, therefore, be viewed as author’s “stories” of how they understand the “problem,” how they interpret the meaning of disability as it is applied under the law, as well as how they believe it should be applied under the law. In this way, they can be viewed as narratives because they are the “stories” that legal scholars share with each other—their own interpretive narratives of why and how disability law should be applied in a particular case or cases. In relating the individual cases, the articles link back to the individual and the advocacy groups as they initiate lawsuits against employers and insurance companies and advocate to legislatures for a change in the way in which infertility is labeled under the law. The articles analyzed for this project were published between January 1, 2000 and December 31, 2007. This date range is pertinent because the initial cases citing ADA as
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a foundation for claiming infertility as a disability began in the mid-1990s and the trend of this type of claim was growing into the late 1990s and into the early part of the 2000s. Seventy-six articles were selected for analysis from a primary sample of 493 articles and are from the categories of articles and essays, notes and briefs, or comments. As a reminder, articles and essays comprised in-depth reports and analyses on very specific topics composed by single authors. Notes and briefs are usually short updates on legislation and case law and may or may not be associated with specific authors. Comments are generally first person opinion pieces also by single authors (see Chapter 2 for a full explanation of sampling procedures and descriptive statistics). Within the legal narratives themselves there are many cases, acts and regulations cited within the data. Table 5.1 includes a list of those cited most frequently, arranged chronologically. Table 5.1 Cited Cases, Acts and Regulations Year Enacted or Decided Names of Case Litigants, Acts or Regulations 1868
Equal Protection Clause of the Fourteenth Amendment [Constitution of the United State of America]
1961
Wisconsin Fair Employment Act , Sex/Gender: Chapter 529
1973
Rehabilitation Act of 1973 [P.L. 93-112]
1974
Geduldig v. Aiello [Supreme Court of the United States]
1975
Gilbert et al. v. General Electric [United States Court of Appeals for the Fourth Circuit]
140 RayOVac v. Department of Industry, Labor & Human Relations [Supreme Court of Wisconsin] Wisconsin Telephone v. Department of Industry, Labor & Human Relations [Supreme Court of Wisconsin] 1976
General Electric Co. v. Gilbert et al. [Supreme Court of the United State]
1978
Pregnancy Discrimination Act of 1978 [P.L. 95-555]
1988
Witcraft v. Sundstrand Health and Disability Group Benefit Plan [Supreme Court of Iowa]
1990 1991
Americans with Disabilities Act of 1990 [P.L. 101-336] International Union, United Automobile, Aerospace & Agricultural Implement Workers of America, UAW, Et Al., Petitioners v. Johnson Controls, Inc. [United States Supreme Court]
1993
Ralston v. Connecticut General Life Insurance Company [Court of Appeal of Louisiana, Third Circuit]
1994
Pacourek v. Inland Steel [United States District Court for the Northern District Of Illinois, Eastern Division (aka Pacourek I)]
1995
Krauel v. Iowa Methodist Medical Center [United States District Court for the Southern District Of Iowa, Central Division] Zatarain v. WDSU Television [Civil District Court for the Parish of Orleans]
1996
Pacourek v. Inland Steel [United States District Court for the Northern District Of Illinois, Eastern Division (aka Pacourek II]
1997
Runnebaum v. NationsBank of Md., N.A [United States Court of Appeals for the Fourth Circuit
1998
Bragdon v. Abbott [Supreme Court of the United States]
1999
Sutton v. United Air Lines [Supreme Court of the United States]
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Murphy v. United Parcel Service [Supreme Court of the United States] Albertson’s v. Kirkingburg [Supreme Court of the United States] 2000
Erickson v. Northeastern Illinois University [United States Court of Appeals for the Seventh Circuit]
2001
Erickson v. Bartell Drug Company [United States District Court for the Western District of Washington, Seattle Division] LaPorta v. Wal-Mart [United States District Court For The Western District Of Michigan, Southern Division]
2003
Saks v. Franklin Covey [United States Court of Appeals for the Second Circuit]
2006
IRS tax code section 213(d) [U.S. Code Title 26:Subtitle A:Chapter 1:Subchapter B:Part Vii:§ 213] 5.2. Infertility and Stigma
Stigma and its effects play a major thematic role in the law review narratives. The infertile, particularly infertile women, are presented as possessing both discredited and discreditable statuses. This occurs across two key categorical norms: the motherhood mandate and ideal worker norms. According to the data, women with careers have difficulty fulfilling one or both sets of expectations and women with infertility find this burden increased. When women have a career or job it is expected that they will not focus fully on their work due to family demands; when they have difficulty having children they aren’t satisfying the idealized feminine role of mother; and when they have a career or job for which they have delayed childbearing they are blamed for bringing on
142 their condition. It is reported that all of these factors feed into the construction of workplace inequalities and discrimination based in sex and gender. 5.2.1. Infertility and the Motherhood Mandate The law review narratives are rife with instances where the motherhood mandate is invoked. What emerges is a portrait of the persistence of mandate that is, in some ways, more entrenched than ever. The perception that women can and should employ biomedical technology, at all costs, puts additional pressures on women to have children. This influences women’s sense of self because our body’s reproductive utility influences how we view ourselves as individuals and productive members of society (Clarke, Martin-Mattthews & Matthews 2006). A highly functioning reproductive body, exhibited either through pregnancy or living children, constructs a normative experience for both the inhabitor of the body, the pregnant woman, as well as for those who observe it (Moser 2005). It is speculated in the narratives that this is a compelling reason for women to have children—a reason that may seem like an explicit choice to fulfill a personal desire but may implicitly have more to do with fulfilling social norms. In the following narrative empirical evidence for such a claim lies in statistical reporting on childbearing in the U.S.--that only two percent of married women in the U.S. are childless by choice—and ties it to the argument made by some critics that reproduction is a “lifestyle choice.” While is it true that some people choose not to have children, the desire to have children is pervasive in our society. One widely-cited study found that only two percent of married women are childless by choice. Moreover, the loss of the chance to conceive, deliver and raise a child due to the disease of infertility is a real and devastating loss.
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Additional passages follow the pattern observed in the quotations below. Many cite the Bragdon decision in discussing the import of reproduction in general. The case of Bragdon v. Abbott, which was heard by the Supreme Court in 1998, was the first time that reproduction was ruled a major life activity and reinforced its importance: As the [Bragdon] Court observed, "reproduction and the sexual dynamics surrounding it are central to the life process itself," and they are considered very important in society. Other narratives cite the overwhelming presence the discussion of children has in our daily lives in maintaining this norm and also in feelings of loss in those unable to uphold that norm: Most Americans are consumed with having children. Conversations at weddings, funerals, and everything in between, often center on a couple's children and their achievements. For those couples who are unable to conceive, there are daily reminders at work, on T.V., and in conversations with friends, that their infertility prevents them from enjoying one of life's most precious gifts. Another way in which infertility is seen as both discrediting and discreditable is that it disrupts the normative life course and the activity of family building. It is discrediting in that a woman without an obviously functioning reproductive body is not overtly fulfilling her feminine role and it is discreditable in that a childless woman’s value and values are both questioned (Kitzinger & Willmott 2002). Affecting 7.1% of married couples, infertility interferes with a couple's ability to participate in "one of the most fundamental and highly valued human activities - building a family." It is irrelevant that some people who choose not to have children (or who choose not to be sexually active) can lead happy, "normal" lives.
144 A person who wants to have children (or to be sexually active) and cannot, because of a biological limitation, is not leading a normal life. To be sure, "in American society, parenthood is seen as an integral part of the transition to adult status. It is relatively easy to document that parenthood is regarded as normative and childlessness as deviant." In a few instances there are claims that the availability of assisted reproductive technologies themselves are a root cause in the reification of women as mothers. In other instances, there are claims that it is rooted in a sociobiological imperative to reproduce. Since 1981, ART has been used in the United States to assist infertile women to achieve pregnancy. The popularity of this treatment coincides with two factors. First, reproductive technology's popularity increased as more women are delaying pregnancy in order to accommodate careers and employment…Second, women who might otherwise forego parenting, or choose adoption, are responding to social expectations that they should biologically "mother." ART accommodates the very social inequities which limit women's opportunities to simultaneously pursue careers and families equal to their male counterparts. Commentators suggest that America is a "pronatalist" country," and if they are correct, women continue to be judged not by the content of their character, but by immutable biological characteristics. However, there are counter arguments seeking to invalidate the notion of motherhood and parenthood mandates. The most common of these is that people choose whether or not to have children, which is an optional life activity, but all people perform a set of primary tasks, which are required life activities. In the words of one commentator, "reproduction is a bodily function, but it is one the exercise of which is purely optional -- a lifestyle choice." Indeed, in rejecting reproduction as a major life activity, the lower court in Krauel characterized reproduction in these terms, noting that "some people choose
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not to have children, but all people care for themselves, perform manual tasks, walk, see, hear, speak, breathe, learn, and work, unless a handicap or illness prevents them from doing so." Both themes appear in the following where the author asserts that bearing a child is a lifestyle choice but also a choice shaped by the impact of biological and societal influences. Judicial interpretation of the Fourteenth Amendment guarantees individuals the freedom to make choices regarding life's most fundamental decisions. The decision to bear a child is a personal choice critical to the continuation of the human race and, for many, to satisfy personal and societal expectations. As such, infertility is framed as a personal trouble throughout the narratives as a limitation, inability or personal loss. This construction is significant because it individualizes the experience of infertility and set-up conditions for finding fault. This is in contrast to recognizing infertility as a structural issue that arises in people’s lives, usually of no fault of their own. The Bragdon majority held that asymptomatic HIV is a "disability" because it "substantially limits" the "major life activity" of reproduction. Under my analysis, which focuses on stigma as a way of identifying impairments that are likely to be systematically disadvantaged, that holding is certainly defensible in principle. Many, if not most, people would consider having a child to be one of life's most significant moments and greatest achievements, and the inability to do so, one of life's greatest disappointments. Since time immemorial, people have procreated, not as a lifestyle choice, but as an integral part of life. …the loss of the chance to conceive, deliver and raise a child due to the disease of infertility is a real and devastating loss.
146 This loss is associated with the notion of blame and is often associated with stereotypes regarding women as mothers. It contributes to feelings of inadequacy and to be treated by others as “in-valid persons” (Cahill and Eggleston 1995:686). In these passages, an uneducated public is described as blaming women for the development of their condition: It is this assumption or element of blame that implicitly characterizes infertility as the result of a "lifestyle" or even "unnatural" choice by women for which they are now being punished - that is, the unnatural or lifestyle label really describes a belief about the choices made by a woman that led to her infertility; not the infertility treatment itself. Most people are aware that age can be a significant factor in female infertility, but there seems to be an overemphasis on age as the key factor triggering infertility. The gender bias becomes apparent because of the further speculation and characterization of blame about what the afflicted woman did to bring about the infertility. Here, the unnatural choice is presented as choosing a career over childbearing is tied with blame: One of the most common assumptions is that a woman has waited "too long" to try to have children, usually because she decided to delay pregnancy until her career was established. The assumption that a woman prioritized her career over pregnancy coupled with the characterization that she waited "too long" reflect the judgment that a woman is morally blameworthy for intentionally delaying her pregnancy and that she is the real cause of her own infertility. These charges reinforce the individual, rather than institutional, factors that make it difficult for women to have both careers and children. They also lend credence to the notion that infertility if both discrediting and discreditable. The impact of such a dually stigmatized status may lead women to feel more responsible for their condition as well.
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In the following passage we are reminded that women suffer more psychological trauma than men in cases of infertility. The notion of isolation and pain is also apparent here as is their influence on women’s self and social identities. …some have argued that there is still a unique consequence that results from the woman's inability to have the physical and emotional experience of pregnancy and ultimately to bear a child. Both men and women who have suffered through this process have testified to the unique and particularly isolating pain that women suffer, due in part to the reality that for many women, their self-image and society's image of them is strongly tied to the ability to have a child. It is not surprising that a sense of isolation and blame is linked to the concept of shame. Shame is a key feature of both enacted and felt stigma: people are given negative labels which in turn affect both their ability to pass as normal in social situations as well as their feelings of self-competency and worth. People who cannot have children suffer some degree of social stigma: Consider the shame historically attached to being labeled a "barren woman" or a man who could not pass on his name. Stigma is important in the construction of infertility as a disability as it is the stigmatization of individuals, and their conditions, that can lead to enacted stigma. Society's treatment of fertility and parenthood as "normal" provides reason to fear that people with infertility will suffer from prejudice and stereotypes and that social institutions and structures will (if only inadvertently) deny them opportunities. In the case of these narratives women appear to be in a double bind when it comes to managing the stigma of infertility. Most commonly this bind emerges from the competing ideals concerning mothers and workers.
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5.2.2. Ideal Worker Norms and the Double Bind The inability for women to meet ideal worker norms is a prevalent theme in these narratives. The continuing struggle for women to have satisfying careers, or at least work that pays the bills, in light of their ability to reproduce is noted as a persistent problem. According to the law review narratives, there are several ways in which women find themselves in a double bind. Bateson (2000[1972]) defines a double bind as an instance where a message given at one level negates or conflicts with a message on another level (206). No matter what a person does, they “can’t win” (201). We see this in our society yet today where women must downplay their reproductive abilities in order to enhance their identities as workers but in so doing they may diminish their status as women. Here, the author speaks of the normative nature of work in our lives and how it is tied to who we are as people: The notion of stigma helps to explain why substantial limitations on working are properly treated as "disabilities." Working is a major part of being "normal" in our society. It is "a means of proving yourself worthy in your own eyes and in the eyes of others," it "shapes individual identities in ways both general and particular," and it provides the arena for significant social integration. Since our nation's founding, work has been "a medium through which a free man might demonstrate that he was a citizen." In attempting to meet ideal worker norms by delaying pregnancy women go against the motherhood mandate. They are damned if they do and damned if they don’t—they are either ideal workers, constructing themselves as social men (Acker 1990) OR they are ideal mothers. In light of the potential for discrimination (for example, being ‘mommy tracked’), many women today put off childbearing until their careers are
149 established. This type of double bind constructs a situation wherein women lend more creditability to themselves as workers while at the same time discrediting themselves as women. In spite of the formal equality victories won for women, the modern workplace is far from providing an environment that meets the needs of women in the same way that it caters to men. Because society defines woman as mother, combined with the fact that mothers face difficulties in trying to achieve both professional and personal success, all women are unfairly pressured when determining whether they actually want to pursue motherhood. In the context of maternity, a woman choosing early childbearing over a career can be perceived as foolish and a less committed, intellectual or capable professional. For her, the glass ceiling is at shoulder-level. In saving face as a worker, women who wait to have children are constantly reminded that with age it becomes more difficult to get pregnant and maintain a pregnancy that results in the birth of a healthy child. Yet women who delay childbearing to establish careers and steady income (to support the children they seek to have) are often confronted with infertility or diminished capacity to conceive. As women age, biologically it becomes more difficult to conceive and maintain a pregnancy. Doctors and researchers paint a frightening picture for women, who, although feeling youthful in their thirties, are described as "over the hill" for reproductive purposes. These types of reactions intensify the effects of the double bind. In addition to the pressure women experience in attempting to fulfill others’ expectations, the belief that they have brought on their condition by ‘selfishly’ delaying childbearing in order to build a career or work record, is yet another challenge that women may face. Yet, for those who commit to an early career, which can be perceived as a "selfish" life plan, the process to promotion and job security can
150 take an initial eight to ten years, leaving such women either at the cusp of fertility decline or over the edge. Recent studies demonstrate that natural conception declines significantly by age 30 and dramatically after 35. Thus, both options, early career and delayed child bearing or early maternity and postponed career, are burdened choices. It is also noted that women with high-level professional careers indicated that their positions did influence decisions on childbearing. Women are much more likely not to have children at all compared to men in similar positions: Most persuasive and relevant to this article, however, is that 52% of those surveyed said that their jobs influenced "their personal decision on the timing of motherhood." The respondents confessed to postponing childbearing "so that they could meet the demands necessary to be considered for partnership." Among the highest achieving women, 49% are childless, while only 19% of similarly situated men are childless. It appears that at every turn working women are faced with this choice: do I delay having children in order to develop a career, to an uncertain end, or do I choose a more traditional career path in which I can attempt to have children at an earlier time without too many repercussions? Whatever the answer to this question, infertility is a condition that is usually unsuspected and requires a great deal of time and energy to overcome— time and energy not spent on whatever type of work in which a woman has chosen to participate. Consequently, infertility treatments themselves provide an additional source of stigma and also construct another type of double bind for women. The demands of fertility treatments are noteworthy and observable. While others may not observe the treatment itself, the effects of the treatment are noticeable. In particular time away from work is required on a fairly regular basis in order to attend
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doctor’s visits and this time off must be accounted for to employers. In this way, these demands are both discrediting and discreditable. They are discrediting in that it is obvious to others that a great deal of time is being invested during the work day in something besides work activities. Discreditable in that disclosing their condition to others women, and attempting to save face as worker, draw attention to their ‘failure’ as a mother. In the following passage it is further noted that infertility treatments themselves are cause for further stigmatization as they emphasize that neither identity is being upheld meaning that she is not seen as an ideal worker or as an ideal woman. …the frequency of the required treatments increases the likelihood that they will clash with work schedules or other social obligations that were designed without infertility in mind. In such a case, the condition of infertility, combined with the required treatment, can reasonably be seen as socially disadvantaging. It is noted in a number of reviews that employers discourage women from undergoing these treatments. Discouragement can occur in a number of ways. The example of a deterrent given here is termination of employment: There is evidence that…employers to discourage women from undergoing infertility treatment. Several cases have been brought under Title VII and the PDA to challenge adverse actions, such as termination, allegedly motivated by assumptions about the effects of a woman's pregnancy or infertility treatment on her job performance. To the extent that women, because of their capacity to become pregnant, will need time off to undergo more diagnostic or other treatment procedures, not to mention the resulting pregnancy that will hopefully be achieved, employers may view this as a conflict with the employee's ability to be a productive employee. A specific example cited of termination due to treatment seeking that is cited in many of the narratives is the case of Pacourek v. Inland Steel. Ms. Pacourek sought
152 redress from the court for discrimination based on her experience with treatment seeking which her employer felt conflicted with her work obligations: In 1986, an Illinois woman named Charline Pacourek began undergoing experimental infertility treatments at the University of Chicago. Between that time and June 1993, when Pacourek was ultimately fired from her job, she allegedly experienced discrimination, verbal abuse, and the disparate application of sick leave policy in the workplace. Another well documented case pertinent to this theme is that of Zatarain v. WDSU Television. Ms. Zatarain was denied a change of schedule in order to accommodate her treatment: The plaintiff in that case…began taking hormone shots as a fertility treatment in July 1992. At the time, Zatarain anchored three evening newscasts for New Orleans television station WDSU. In November 1992, Zatarain requested a modification of her personal services contract with WDSU that would modify her work schedule to better accommodate her fertility treatments. When WDSU declined to renew Zatarain's contract, she sued claiming disability discrimination. An additional case that is oft times cited in the reviews is that of Erickson v. Northeastern Illinois University. In this case Ms. Erickson was fired for using too many sick days. She also sued her employer claiming discrimination based on her disabled status. In this case the employer did not defend their actions but rather focused on the plaintiff’s claim that she was indeed disabled and, therefore, warranted special accommodations: In Erickson v. Northeastern Illinois University…the defendant made three arguments against the use of reproduction as a major life activity. First, the defendant in Erickson argued that, unlike the other major life activities listed by the EEOC, the activity of reproduction cannot be performed independently. Second, the defendant argued that reproduction should not qualify as a major life activity because of
153 its complexity. Finally, the defendant echoed the Zatarain "frequency" argument. The force with which the motherhood mandate and ideal worker norms collide is portrayed as leaving women with infertility in a particularly precarious position in the workforce. Not only do they deviate from both sets of expectations they also require ‘special treatment’ if they are to achieve even limited success fulfilling them. In such cases, as seen within these court cases and as with coming out with HIV (Derlega 2002) or mental illness (Phelan, Bromet & Link 1998) disclosing information in order to receive recognition and accommodations can have negative consequences. Cases of discrimination occur in other circumstances but in these narratives they are most often depicted as occurring within the workplace, a site that is a the primary focus of the ADA, Equal Employment Opportunity Commission, and Title VII of the Civil Rights Act. 5.2.3. Women, Inequalities and Discrimination In this next set of narratives, legal scholars concentrate on the convergence of how the double bind described previously amplifies inequalities and discrimination for women with infertility. For the most part, the narratives describe inequalities and discrimination in the workplace and in health insurance. In attempting to overcome these structural constraints, women have attempted to construct more creditable identities as workers while maintaining creditability as women/mothers. This is important for the individual women involved and also women as a class of citizens. Distrust of women workers due to their reproductive capacity is a salient category within this data. In the case of pregnancy and discrimination against women, it is noted that:
154 …gender discrimination in employment is well-documented and its focal point has been pregnancy. Employers have been quite hostile to women employees as evidenced by overt exclusions, denial of promotions, and pay differentials to name just a few examples. Employers have historically offered several justifications for such discrimination, including beliefs that pregnancy makes women unsuitable for certain kinds of work, that the cost of pregnancy creates intolerable burdens to employers and male employees, and that women, who will ultimately get pregnant and leave anyway (to stay home and be supported by a husband) are stealing job opportunities from deserving men. The potential for workplace discrimination due to pregnancy has said to be alleviated by the implementation of the Pregnancy Discrimination Act, listed under Title VII of the Civil Rights Act. Legal scholars attribute the development of this legislation to the Supreme Court decision in the case of Gilbert v. General Electric (1976), where the courts found that there was a not a link between insurance exclusions for pregnancy and gender. The Pregnancy Discrimination Act states that “women who are pregnant or affected by pregnancy-related conditions must be treated in the same manner as other applicants or employees with similar abilities or liabilities” (Equal Employment Opportunity Commission 2008). The majority [in Gilbert] found that because not all women would be adversely affected by the exclusion, there was a lack of identity between the pregnancy exclusions and gender. The Court treated the classification as between pregnant and non-pregnant persons, the latter category containing both men and women. Only pregnant women would be adversely affected, but non-pregnant women would be treated the same as men. While the PDA is claimed to have set precedent for the import of insurance coverage for pregnancy and childbirth, discrimination cases persist. Legal scholars frame the decisions of the cases of Zatarin v. WDSU-Television (1995) and Kraul v. Iowa Methodist Medical Center (1995) as maintaining the notion that women make a lifestyle
155 choice that adversely affects ideal worker norms. Further, when women make this choice they should not expect that employers will offer flexible work schedules or that health insurance plans will not be discriminatory in offering coverage in order to coalesce resources for achieving motherhood. Labeling childbearing a ‘choice’ and not a pregnancy related condition constructs constraints for the argument that infertility is an interference with the major life activity of reproduction. In Pacourek I, the following is noted: …the employer filed a motion to dismiss for failure to state a claim upon which relief could be granted, arguing that the PDA was inapplicable to the facts of this case because an inability to become pregnant is not a related medical condition of pregnancy The court in Pacourek II found fault with the claims of the Zatarain and Krauel decisions as well as the defendant’s in Pacourek I and II: In essence, Zatarain and Krauel trivialize reproduction. At the risk of waxing philosophical, none of us, nor any living thing, would exist without reproduction . . . . Since time immemorial, people have procreated, not as a lifestyle choice, but as an integral part of life. In fact, to call working a major life activity, but to deny the same status to reproduction, seems ludicrous. The court suspects that people have been producing offspring for far longer than they have been working. This holds all the more true for women, who, until relatively recently, had to choose between working and child-bearing, and more frequently chose the latter. In a similar case, LaPorta v. WalMart. Here the defendant once again claimed that the plaintiff, Ms. LaPorta, lacked standing but in this case recognizing that reproduction is a major life activity. What sets this case apart is that the defendant claimed that because Ms. LaPorta became pregnant her reproductive capacities were not limited and that, therefore, she did not have standing under the ADA. This claim is founded in what is
156 termed the “Sutton Trilogy,” a trio of cases decided upon the same day by the Supreme Court. 13 In that case, plaintiff brought an action under the ADA, Title VII and state laws challenging her termination after her employer failed to accommodate her request for medical leave to receive treatment for infertility. Her employer argued, among other things, that plaintiff lacked standing to bring the action because her infertility was not a disability within the meaning of the ADA. Relying upon the Sutton trilogy, defendant argued, "Plaintiff's eventual success in becoming pregnant through artificial insemination in 1998 renders it 'impossible' to find that her condition of infertility substantially limited her in the major life activity of reproduction." One of the biggest concerns for women who wish to treat their condition is discrimination in insurance coverage for fertility treatment. Here the author provides grounds for providing insurance coverage for infertility by claiming that a large percentage of a diverse population is affected by infertility, a condition recognized as a disease by the medical community. Infertility affects approximately ten percent of the reproductive-age population in the United States, and strikes people of every race, ethnicity and socio-economic level. It is recognized by the medical community as a disease, one with devastating physical, psychological, and financial effects. Nonetheless, comprehensive coverage of infertility treatments under employersponsored plans – where…most Americans get health insurance -- appears to be the exception rather than the rule.
The Sutton Trilogy is comprised of the cases of Sutton v. United Air Lines, Murphy v. United Parcel Service and Albertson’s v. Kirkingburg. In this set of rulings the court appeared to gut part of the ADA regulations in its consideration of what constitutes a substantial limitation of a major life activity. In these rulings, the court determined that such a limitation in ability should be measured while in its corrected state, in other words after the condition has been treated or its symptoms have been mitigated. This has caused problems across the board for those seeking protections under the ADA (Rosenthal 2002-2003).
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The notion that reproduction is a lifestyle choice—and not a major life activity— is cited throughout the cases examined in the law review articles. According to the authors, employers and insurers most often make these claims but so do legislators and judges in disallowing infertility discrimination claims. This despite the Supreme Court ruling in Bragdon v. Abbott. In the words of one commentator, "reproduction is a bodily function, but it is one the exercise of which is purely optional -- a lifestyle choice." Indeed, in rejecting reproduction as a major life activity, the lower court in Krauel characterized reproduction in these terms, noting that "some people choose not to have children, but all people care for themselves, perform manual tasks, walk, see, hear, speak, breathe, learn, and work, unless a handicap or illness prevents them from doing so." Here this notion is linked with the fear of increased health care costs. The author feels that this claim is unjustified and that it is used because women bring most lawsuits to court. In this way, women with infertility are treated with civil inattention (Cahill & Eggleston 1995). Their condition is acknowledged in passing but then, as no further action is deemed warranted, attention is withdrawn from the issue: Opponents of legislative or judicially mandated infertility coverage commonly argue that reproduction is simply a "lifestyle choice," and that increased coverage will further increase rising health care costs. When examined critically, however, these arguments fail to justify the pattern of exclusions. Indeed, infertility is still seen as a "woman's issue," it is not a "lifestyle choice," It is important to consider the following passage the content of which is echoed in other articles. Many believed that the Bragdon ruling would have far-reaching, positive effects for those suffering from infertility. However, as found in the case of Saks v.
158 Franklin Covey the court found that regardless of standing employers are not required to offer health insurance coverage for infertility treatments. This is yet another double bind that women with infertility face. Even though infertility substantially limits the major life activity of reproduction, employers and insurers are in no way obligated to provide any assistance to them. This is also another example of how women with infertility suffer from civil inattention (Cahill and Eggleston 1995). The Supreme Court held in the 1998 case Bragdon v. Abbott that reproduction is a major life activity within the meaning of the ADA. Many lawyers, activists and scholars thought that coverage for infertility treatment would follow soon after Bragdon. However, in 2003, in the first major case applying Bragdon to health benefits, Saks v. Franklin Covey,the Second Circuit held that an employer's health plan could exclude coverage for infertility procedures performed on women only without violating Title VII or the ADA. Lastly, the fear of being discriminated against, of enacted stigma, is said to keep women from disclosing their condition—stigma management accomplished through managing information, through selective concealment (Cahill & Eggleston 1995). This is despite anti-discrimination laws such as the Pregnancy Discrimination Act. …a pervasive practice among women who hide the fact that they are receiving infertility treatment and their plans to have a child in general for fear of discrimination by their employers. In this respect, an employer's reason for denying infertility benefits may merely be an extension of the same biases that have formed the basis for a pervasive history of pregnancy-based employment discrimination - the type of bias the PDA was expressly enacted to prevent. This fear is also said to lead to self-induced isolation—stigma management accomplished through managing proximity. Cahill and Eggleston (1995) refer to this when discussing disclosure. Disclosure can lead to both open person treatment, where
159 people find it acceptable to comment and give unsolicited advice at any time they deem it appropriate, or to non-person treatment, where attention is constantly diverted elsewhere, avoiding both the person and the condition which makes them uncomfortable. Infertility is a "major life crisis" and can cause depression and feelings of anger, frustration, and helplessness. Moreover, couples who experience infertility often isolate themselves from their friends, families, and society at large in order to avoid being reminded of their inabilities to conceive. These narratives repeatedly expound on the idea that women are in a double bind due to the fact that they are women. Reproduction interferes with ideal worker norms and ideal worker norms interfere with the ideal feminine norm of being a mother. An infertile identity intensifies and interferes with both norms. In seeking treatment, a woman becomes discredited in that she is absent from work more often in order to attend doctor visits. Whether or not she discloses the reason for those visits her feminine identity is discredited and discreditable as it is apparent that she is not pregnant nor does she have any children. Further questions ensue surrounding treatment, treatment costs and financial responsibility for them: Is infertility a major life crisis? If so, is it stigmatizing enough to be deemed a disability? How and by whom should these determinations be made? 5.3. The Narrative of Infertility as a Disability: Framing Case Law and Legislation A prominent theme in considering the case of infertility as a disability is the perception that the disabled are invisible, not requiring our attention, and, are therefore, left out of social planning. This is noted as particularly true for those with so-called hidden impairments or disabilities:
160 If people with disabilities have not been considered in such planning because they have been hidden from mainstream society, then a policy of integration can provide visible daily reinforcement of the fact that they in fact are among the workers and consumers for whom social and physical structures should be designed. But people with "hidden" disabilities may not get the benefit of this effect. The "hidden-ness" of their impairments will make integration alone a less effective way of forcing society to consider people with such conditions to be among the "normal users" of workplaces and services. Further complicating this issue is the notion that we must categorize the disabled as either suffering “minor” or “true” disabilities in order to determine standing and appropriate accommodations (if any): Unfortunately, the line between a minor disability and a true disability tends to be faint instead of bright, and jagged instead of straight. One reason why many ADA plaintiffs fail to meet the definition of disability lies in the EEOC's definition of the term "major life activity." The EEOC defines this term, as stated earlier, in terms of a list of major life activities, such as seeing, hearing, and walking. This approach tends to slant the definition of disability in favor of people with readily apparent, or "traditional," disabilities. People who are blind or deaf or who use wheelchairs or portable oxygen equipment will always be able to argue that they are covered by the major life activities of seeing, hearing, walking, and breathing, respectively. In contrast, "hidden" impairments such as mental illness, diabetes, epilepsy, back injuries, or narcolepsy generally do not result in substantial limitations on an individual's ability to speak, breathe, walk, see, work, hear, or learn. However, these impairments may cause individuals to experience substantial limitations in other life activities that do not appear on the list. This disparity is cited as a major reason why it is difficult to distinguish between disability, impairment and/or a nondisabled label. In the following text it is noted that the entire notion of disability, who is a disabled person and who is not, is a social construction constrained by values across time and space: …neither the regulations adopted to implement the ADA, nor the Rehabilitation Act regulations on which they are based, provide meaningful assistance in
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making the vague "disability" definition concrete. The definitional problem is not unique to the ADA. Rather, a long history of failed attempts to define "disability" demonstrates that the problem is inherent in any attempt to give meaning to the word. The dividing line between the "disabled" and the "nondisabled" - just like the dividing line between different races (and, indeed, the concept of "race" itself) - is plainly an artifact of the particular society drawing the line and the purposes for which the line is being drawn. The decision where to draw the line is a value question, not a determination of objective fact. In this section, binary constructions based in conflicting value systems again dominate the landscape. The data allow us to see the competing rhetoric surrounding the issue of constructing infertility as a disability through the same lens as the previous section: through court rulings where rules and regulations from the ADA, EEOC and Title VII are used as precedent. Again, sex and gender discrimination play a large role in this debate. Unlike diseases such as cancer, HIV/AIDS and mental illness, women’s health care needs, specifically reproductive needs including infertility treatment, are noted as being treated as ‘special’ or ‘extra’ by employers and insurers—even by the courts. This makes infertility a unique case in the social construction of disability. There are multiple arguments against this construction where once again emphasis is on the ‘voluntary’ nature of reproduction itself, framing that ‘choice’ as a luxury (for which others should not have to help us afford)—as a commodity good. The individualization of this trouble is an interesting turn as in order to gain disability status individuals are required to disclose their condition and make themselves visible, outing themselves as discreditable people in order to try and save some sense of face and gain social support. But when women with infertility disclose their condition, and resulting discrimination,
162 they are told this is an individual problem not a social one. Therefore, as seen in the close of the section 5.3, their condition is not viewed as a viable one under the law. 5.3.1. Reproduction as a Major Life Activity 5.3.1.1. Interpretations under the Americans with Disabilities Act Scholars claim that inability to provide a standardized definition of disability works against those asserting that infertility should be so classified. It is stated in the following section that the ADA regulations imply that major life activities only encompass self-care and performance on an individual basis. The fact that reproduction requires the interaction of two unique individuals is used by defendants in an attempt to undermine disability claims in such cases: While the ADA does not define a major life activity, federal regulations enumerate the standards. The regulation states that "major life activities means functions such as caring for oneself, performing manual tasks, walking, seeing, hearing, speaking, breathing, learning, and working." Defendants have used this definition to argue that Congress meant to exclude reproduction as a major life activity. They claim that the list of examples stresses independent activities, while reproduction requires participation from two individuals. However, here it is noted that the determination that reproduction is not a major life activity, with which infertility interferes, is not consistent with federal legislation. …policy problems may arise by denying reproduction the status of a major life activity. One opinion points out that denying reproduction the status of a major life activity is inconsistent with protections Congress has afforded to pregnancy and childbearing, in legislation such as the Family and Medical Leave Act as well as the Pregnancy Discrimination Act. Civil rights legislation can assist in converting these negative attitudes and behaviors which in turn will help remove the structural constraints (aka access to material resources such as health care coverage for treatment) and social constraints (i.e. the
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stigma associated with impairments of an unrecognized nature) that have kept those categorized within this label from fully participating in society. …the disability rights movement started with the observation that people with disabilities share a common experience of systematic exclusion, but it took the point a step further. It added the insight that the very notion of "disability" depends crucially on the social practices that create that shared experience. To most disability rights advocates, "disability" is not an inherent trait of the "disabled" person. Rather, it is a condition that results from the interaction between some physical or mental characteristic labeled an "impairment" and the contingent decisions that have made physical and social structures inaccessible to people with that condition. The proper remedy for disability-based disadvantage, in this view, is civil rights legislation to eliminate the attitudes and practices that exclude people with actual, past, or perceived impairments from opportunities to participate in public and private life. The Bragdon ruling is based on the notion that reproduction can and should be categorized as a major life activity, the impairment of which is considered a disability. As seen below, the interpretation of this ruling is that access to financial resources through insurance coverage for fertility treatments should become more readily available: In Bragdon the Court announced that "reproduction and the sexual dynamics surrounding it are central to the life process itself." The Court held that HIV was a substantial limit on the ability to reproduce. As a result of this decision, the inability to naturally conceive due to a disease, such as infertility, cannot be given any less protection. A major life activity does not have to involve a "public, economic, or daily dimension." Bragdon should be interpreted as an attempt by the Supreme Court, which concluded that reproduction is a major life activity, to further restrict the ability of insurance companies to disclaim coverage for infertility. Here, points of reference from the Bragdon decision are provided in an effort to frame how the infertile, and coverage for their treatment, should be viewed from this point forward:
164 The Bragdon decision gives infertile couples a basis on which to demand equal coverage from insurance companies in regards to infertility treatments. First, an infertile couple who satisfies the ADA three-pronged approach should be a protected class. Second, the classification of infertility as a disability should require employers who offer health care plans to provide insurance coverage for infertility treatments. Finally, "under the ADA, employers are also prohibited from engaging in a contractual relationship with a health plan that would discriminate against a disabled employee." Consequently, the recognition of infertility as a disability will cause courts, legislators, employers, and insurance companies to reconsider their views on infertility coverage. The term ‘major’ was used by the court to compare reproduction with other life activities and found that it was of comparative importance to eating, drinking, walking, and caring for one’s self. In the following passage, the author claims that this judgment may have opened Pandora’s box in that it may allow too broad a definition of disability. The Court next considered whether reproduction "is a major life activity." Justice Kennedy said the majority had "little difficulty concluding that it is." The key to this conclusion, and the bone of contention for the dissent, was in the Court determining the court of appeals was correct in finding the word "major" means "comparative importance" and "suggests that the touchstone for determining an activity's inclusion under the statutory rubric is its significance." It is in the next two sentences that Justice Kennedy potentially opened a Pandora's box of ADA claims. He wrote: "Reproduction falls well within the phrase 'major life activity.' Reproduction and the sexual dynamics surrounding it are central to the life process itself." Further, some scholars argue that in order to be disabling impairment of a major life activity must result in harm to an individual’s public, economic or daily character. In the following passage it is noted that the Supreme Court ruled that this is not the case and not a required characteristic in finding an activity of major import: …the defendant argued that major life activities should only be those activities "which have a public, economic, or daily character." The Court found no support for this argument in the ADA, and cited the activities of "performing manual
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tasks" and "caring for oneself" as recognized major life activities that do not have a public, economic, or daily dimension. "In the absence of any reason to reach a contrary conclusion," the Court wrote, "we agree with the Court of Appeals' determination that reproduction is a major life activity for the purposes of the ADA." As the Supreme Court called for a broadening of interpretation for what is considered a major life activity the court in the case of Pacourek v. Inland Steel called for an interpretation of the Pregnancy Discrimination Act that would include the condition of infertility: In Pacourek v. Inland Steel Co. the court held that a woman's medical condition which prevents her from becoming pregnant naturally is a "related medical condition" under the PDA. Noting the expansive language of the PDA, the court stated that the term "related" was a "generous choice of wording, suggesting that interpretation should favor inclusion rather than exclusion in the close cases." And here, another author stresses that the court addressed the notion of an overall understanding that remedial statutes require broad interpretation: Applying principles of statutory interpretation, the court held that a woman's medical condition which prevents her from becoming pregnant naturally is a "related medical condition" under the PDA. The court noted the expansive language of the PDA and stated that the term "related" suggests more, rather than less, should be included in this definition. The court also used the canon of statutory interpretation that remedial statutes, including civil rights laws, are to be construed broadly. In viewing the plain language of the statute, the court argued that "in ordinary terms, a medical condition related to the ability of a woman to have a child is related to pregnancy and childbirth." 5.3.1.2. Infertility and the Equal Employment Opportunity Commission Regulations The EEOC provides yet another set of regulations that employers are expected to comply with in providing accommodations for disabled employees. The traditional
166 understanding of disability, who, what and how being disabled means and what the appropriate social response to those labeled as such should be, is key to understanding these EEOC regulations. The reproductive system is listed as a system that when impaired may be considered a disability: An individual bringing a claim under the ADA must have a "physical or mental impairment," a prior record of such an impairment, or be regarded as having such an impairment. The EEOC has provided a list of physical and mental impairments that qualify under the statute. This list includes "reproductive" body systems as one of the several qualifying functions of the body that can be "impaired," creating a disability. The American Society for Reproductive Medicine defines infertility as "a disease of the reproductive system that impairs one of the body's most basic functions: the conception of children." The Pacourek decision is also important in understanding how EEOC regulations are interpreted. The defendant attempted to employ a lesser court’s ruling that denied reproduction as a major life activity: Other courts rejected Krauel's reasoning, and characterized reproduction as a "major life activity." In Pacourek v. Inland Steel Co., the District Court for the Northern District of Illinois denied an employer's motion to dismiss an employee's claim that she was terminated as a result of her infertility, reasoning that because the regulations list disorders to the reproductive system as qualifying physical impairments, procreation and reproduction must have been contemplated as major life activities. In other words, the court felt that excluding reproduction from the definition of "major life activities" would render the mention of "reproductive" body systems in the EEOC regulations moot, since no other major life activity would likely be substantially limited by reproductive disorders. Another case that is deemed as key in examining and understanding the effects of EEOC regulations on cases of reproductive impairments and discrimination is Erickson v. Northeastern Illinois University. The defendant argued that reproduction is not a major life activity for three reasons: 1) it cannot be performed independently; 2) it is too
167 complex a condition, and; 3) it is not performed on a regular, ongoing basis. The court, however, rejected these arguments: The Erickson court rebutted all of these arguments. First, the court found that at least one major life activity proposed by EEOC-"interacting with others"-involved the participation of other individuals, and that each of the other life activities affects how people relate to others. Second, the court, noting the complexity of other activities like seeing and hearing, stated that the simplicity or complexity of the process is insignificant in determining whether that process is a major life activity. Third, the Erickson court argued that the "processes that occur continually in both male and female reproductive systems in order to achieve conception" meet the "frequency" premise from Zatarain. The Erickson court also found support for its view from dicta in a Supreme Court decision that the definition of disability should not be limited to traditional understandings of disability. 5.3.1.3. Defining Infertility as a Deduction under the IRS Tax Code In a number of the narratives the deductibility of infertility treatments under IRS tax code section 213(d) was discussed at great length. Opinions varied on the veracity of employing the code for the condition of infertility. Case law is used as precedent for the arguments for and against its use in this situation as the code does not designate particular eligibility criteria. Once again, the discussion turns towards whether or not reproduction is a major life activity which, when impaired, is disabling. This passage speaks to the negative right that women have to seek treatment and the corresponding positive right of receiving a tax benefit in order to recoup some of that expense. A person's body should permit the person to choose whether to bear children: what a person does with that choice is irrelevant. If a person's body does not permit the person to choose whether to bear children and that person seeks medical care to overcome the disease or condition of infertility, the cost of that medical care is deductible under 213. And, here, a more elaborate argument:
168 Case law thus establishes that reproduction is a normal biological function, and the baseline for deductibility under 213 is normal biological functioning. In the context of reproductive functioning, "normal" functioning does not necessarily mean "natural" functioning. Instead, normal in this context means a state of the body (pregnant or not pregnant) that the patient can choose and achieve with medical assistance. In other words, the 213 definition of "medical care" includes medical intervention that facilitates reproductive choice. Reproductive medical care sometimes facilitates pregnancy, by treating or bypassing a diseased or impaired reproductive system and allowing an infertile patient to achieve the "normal" state of pregnancy that a fertile patient can achieve without any medical intervention. 5.3.1.4. Gaining Access, Achieving Success Equates with Filing Suit A difficulty noted throughout the narratives is that regardless of the precedent set by the Supreme Court individuals must bring individual suits in order to attempt to gain accommodations and benefits under these acts, regulations and codes. For plaintiffs to win, they must convince the courts of two conditions. First, infertility must constitute a protected disability under the ADA. Second, the ADA must prevent employers from discriminating against the disabled by refusing to accommodate fertility treatment in their insurance plans. In this budding area of the law, most litigation has focused on the first issue: whether infertility qualifies as a disability under the ADA. The Supreme Court may have resolved this dispute over the definition of disability in 1998 with Bragdon v. Abbot, yet questions abound over the applicability of Bragdon to the world of infertility. In order to gain accommodations, women with infertility must add the burden of proof of infertility, its impairing effects, and discrimination, to managing the physical, psychological and financial stress of infertility itself. Courts appear to be amenable to women’s claims; however, employers suggest that despite physician’s affidavits women’s infertility may have other root causes (such as age or stress) which would not be under the purview of disability law In Zatarain v. WDSU-Television Inc., an employee brought suit under the
169 ADA claiming that her employer rejected reasonable accommodations to her work schedule to allow her to pursue infertility treatment. No specific medical cause for her infertility was established. Her employer argued, among other things, that her infertility was not an impairment because it was likely caused by her age (she was approaching 40) or job stress. The court denied the summary judgment for the employer on that basis because the employee had offered expert testimony sufficient to support a finding that she suffered from a disorder of the reproductive system apart from age and stress. …in LaPorta v. Wal-Mart Stores Inc., the employee's physician stated that she was infertile, but could not identify a specific cause for her infertility. Her employer suggested that because it might arise from "a physiological problem of the [husband]" or "environmental factors and lifestyle habits," she had not demonstrated that she was disabled within the meaning of the ADA. The district court rejected this argument, finding that a reasonable jury could find that the plaintiff was infertile based on the doctor's affidavit. Further, in the case of Pacourek the employers claim that unexplained infertility “is not covered” under the ADA, another way in which the infertile receive civil inattention. However, in this instance this argument was rejected by the court: …in Pacourek v. Inland Steel Company, the court outright rejected the requirement of medical cause. In that case, an employee brought suit under the ADA claiming that she was fired for taking time off for infertility treatment. The cause of her infertility was medically unexplained. Her employer argued, among other things, that she lacked standing because unexplained infertility is not an impairment covered by the ADA. The district court rejected that argument and held that "it does not matter whether the infertility is explained or not. The ADA and regulations under it are simply devoid of any requirement that a physiological disorder or condition have a scientific name or known etiology." Here we find another double bind as the social expectation to protect and cure does not come along with a social, fiscal expectation of assistance in gaining access to a cure. Individuals who disclose their condition in an attempt to overcome discrimination and to gain accommodations are just as likely, if not more so, to both feel stigmatized and
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to receive stigmatizing treatment, than those who do not disclose their condition. While many of the narratives note that plaintiffs were granted standing under the ADA, few are noted as having gained accommodations and benefits. When the ADA was passed, many infertile advocates believed that if reproduction was recognized as a major life activity under the ADA, then the ADA would effectively force employers to accommodate employees who wish to undergo infertility treatments and compel health insurers to include infertility insurance in their plans…Three years have passed since the Supreme Court recognized reproduction as a major life activity in Bragdon v. Abbott. Although numerous courts have applied the rule laid down in Bragdon, they continued to hold that an employer's failure to provide infertility insurance does not violate the ADA. And, here yet another bind is noted--even if a disability claim is deemed legitimate not offering accommodations and benefits is not deemed discriminatory. The EEOC noted that "insurance distinctions that are not based upon a disability and are applied equally to all insured employees are not discriminatory." Broad, equally applied distinctions that do not "single out a particular disability, a discrete group of disabilities, or disability in general" are not disability-based. The EEOC noted that a blanket exclusion from coverage for pre-existing conditions would not violate the ADA." Similarly, "coverage limits that are not exclusively, or nearly exclusively, utilized for the treatment of a particular disability [or] distinctions based upon a disability" are not discriminatory. We are introduced to this development through the example of the case of Saks v. Franklin Covey. Whether disabled or not, Ms. Saks was not seen to be discriminated against. She received the same treatment, without the emotional, social and financial costs of going to court, had she kept silent about her condition. In Saks, one of the reasons Judge McMahon dismissed the plaintiff's claim was that she had equal access to the same insurance policy as the nondisabled. All employees faced the same limitation on coverage for "surgical impregnation
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procedures." Judge McMahon pointed to cases…that held "that insurance distinctions that apply equally to all insured employees do not discriminate on the basis of disability." [Further] insurers were under no obligation to provide equal benefits across disabilities. At other times, defendants have employed the argument that since a woman eventually became pregnant and gave birth that she was not infertile, usually relying on the Sutton trilogy as precedent for these claims. Relying upon the Sutton trilogy, defendant argued, "Plaintiff's eventual success in becoming pregnant through artificial insemination in 1998 renders it 'impossible' to find that her condition of infertility substantially limited her in the major life activity of reproduction." The court rejected defendant's argument: "unlike the plaintiffs in Sutton and Albertsons, Ms. LaPorta is not asking the court to consider her situation in an uncorrected state. To the contrary, she points to the need for accommodation arising from the corrective measures themselves." Thus, the court recognized that defendant's argument would create a painful "Catch-22" for the plaintiff--her infertility is an impairment that was ultimately correctable through expensive and intrusive treatment, but her employer can refuse to accommodate her requests for medical leave to pursue such treatment because the treatments were ultimately successful. In contrast, courts have also pointed out that treatment or correction of a disability does not cure it and, therefore, should not mitigate plaintiffs claims for relief: As the Court explained, the "use of a corrective device does not, by itself, relieve one's disability. Rather, one has a disability under subsection A if, notwithstanding the use of a corrective device, that individual is substantially limited in a major life activity." Indeed, the measures taken to mitigate the effects of an impairment may themselves impose substantial limitations. My discussion of infertility illustrates both points. Medical treatments may allow a person with infertility to have a child, but that fact alone does not necessarily relieve the substantial limitation in the major life activity of reproduction. When gestation can occur only through a burdensome and stigmatizing course of treatment, a
172 person's medically generated ability to reproduce will not eliminate the substantial limitation on reproduction. Here, the Ralston court is identified as taking this stand: Under the above definitions, we find Mrs. Ralston's condition is not normal, that a vital function (the ability to reproduce) is impaired. In our view this constitutes a "sickness." The process of in vitro fertilization provides a remedy for this disorder within the reproductive organs. In vitro fertilization may result in pregnancy which serves the end purpose of the female's reproductive organs. This Court does not adopt appellant's reasoning that a procedure must effect a "cure" to qualify as treatment. When in vitro fertilization is successful, however, the sickness (the inability to reproduce) is cured. Thus, under the language of the policy, we find in vitro fertilization "essential for the necessary care and treatment" of Mrs. Ralston's infertility. It appears that gaining disability status for infertility is rarely easy but gaining accommodations in order to treat infertility appears difficult, if not impossible. This is regardless of the decision in Bragdon v. Abbott deeming reproduction a major life activity and infertility a substantial limitation on that activity. Throughout the narratives the theme of the catch 22 is linked to the ways in which infertility is a unique case in the social construction of disability. Often this uniqueness is tied to charges of sex and gender discrimination. 5.3.2. Unique Attributes in the Social Construction of Infertility as a Disability In examining the law review data, the most prevalent theme is that infertility is a unique case of disability as it is gendered. Although women and men tend to be equally susceptible to infertility (about 33% of the cases attributable to each) most treatments are focused on women. As in other areas where work and reproduction overlap, women also make up the majority of workers affected by discrimination. A second major theme found within this data set is the claim that infertility is not a disability at all. Reasons for
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this argument include claims that, despite the Supreme Court’s ruling to the contrary, infertility is not a major life activity; that family building is a voluntary activity and, therefore, not being able to have children is not a fundamental right; and, finally, that having a child is a consumption decision that is not sociobiological but market driven. 5.3.2.1. Gender Makes All the Difference Historically, reproductive healthcare needs that affect women have not been a major focus in healthcare research or practice. And, thus, insurers as well as practitioners are trained that women’s reproductive healthcare should be treated apart from ‘basic’ healthcare needs (as noted in the previous section). This disparity is noteworthy as it appears to conflict with the social expectations of women to reproduce. Just as they have faced repeated discrimination in education, women have encountered recurrent discrimination in the area of healthcare. The United States health care industry and medical profession have their basis in "patriarchy and a demeaning view of women." Women's health interests have been consistently overlooked by the legislature, and the minimal amount of women's health care legislation passed addresses women solely in the role of childbearer and childraiser. Repeated attempts by the government to limit impoverished women's reproductive rights serve as even greater proof of discrimination against women in the realm of health care. In order to obtain the care and benefits that they need, women continue to have to turn to legislatures and the courts in order to attain their rights to the most basic of services. The following passage provides a chronology a few of these rights: Historically, employers have treated reproductive and other female-specific health care needs as separate from basic, general health care. Female employees have consequently turned to legislative initiatives to secure legal protections to meet essential, female-specific health care needs. For example, through legislative action, Wisconsin women were guaranteed coverage for maternity leave in 1981,
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coverage for mammograms in 1989, and coverage for breast reconstruction surgery after a mastectomy in 1997. Pursuant to federal legislation, women were guaranteed maternity leave in 1978, and coverage for a mastectomy and breast reconstruction in 1998. This is generally not the case for men’s reproductive healthcare and this emerges as yet another theme in the law review data. There are many comparisons in the data of insurance coverage for erectile dysfunction drugs, such as Viagra, with contraception and infertility drugs. The case of mandated Medicaid coverage of Viagra is presented as grounds to call for coverage of women’s fertility treatment—especially as it is pointed drugs such as Viagra are also prescribed to assist with some issues with male infertility. A state Medicaid program's refusal to cover fertility drugs while providing coverage for Viagra results in an inequality of treatment. By providing coverage for Viagra, a state gives men who receive Medicaid benefits and who suffer from infertility a means of overcoming their problem through the use of a male fertility drug. Meanwhile, women who receive Medicaid benefits and suffer from infertility cannot undergo treatment with female fertility drugs unless they pay for the treatment themselves. Although Medicaid expressly excludes coverage for female fertility drugs, on July 2, 1998, the Health Care Financing Administration ("HCFA") mandated that state Medicaid programs provide coverage for the impotency drug Viagra. However, Viagra is also used to treat male infertility, which is in conflict with the exclusion for fertility drugs. Accordingly, Medicaid's exclusion of coverage for female infertility drugs is questionable and possibly discriminatory. Another set of narratives addresses the disparate claims of the medical necessity in the use of fertility drugs and treatment versus the medical necessity of erectile dysfunction treatment. Here the author goes so far as to claim that framing one as necessary and another as not necessary is not only misguided but hypocritical: …fertility drugs for women are a medical necessity if these women wish to
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ever become pregnant. Infertile women cannot remedy their condition without fertility drugs or other fertility treatments, such as in vitro fertilization. Some commentators have argued that, because fertility drugs do not cure a women's reproductive abnormalities but instead provide temporary relief from the problem, the drugs cannot be considered a medical necessity. This argument is selfdefeating, however, as it destroys the assertion that Viagra is medically necessary. Viagra does not permanently cure erectile dysfunction; it merely provides temporary relief from the problem so that a man can have sexual intercourse. Thus, if the state does proceed with this line of reasoning, the Court should be able to clearly see the hypocrisy in the states' assertions that infertility is not a disease and that fertility drugs are not medically necessary. As a result, the Court should again refuse to acknowledge this distinction as a persuasive justification for the inequality of treatment. Accordingly, the state will have failed to meet its burden of producing any exceedingly persuasive justification for covering Viagra under Medicaid while refusing to cover other forms of fertility drugs for women. The authors of these narratives further scrutinize the constitutionality of this practice. Federal and state benefit programs are required to meet substantive due process and equal protection standards. A number of claims are put forth in the narratives regarding this discriminatory practice. Here, and in other passages as well, advice is proffered to female Medicaid recipients: With the failure of their substantive due process argument, the female Medicaid recipients should instead focus on an equal protection claim. The Fourteenth Amendment provides that "no State shall . . . deny to any person within its jurisdiction the equal protection of the laws." In essence, any time a state actor makes a law resulting in a favored and a disfavored class, a potential equal protection problem arises. The recipients could argue that the provisions regarding Medicaid coverage of Viagra and fertility drugs clearly favor men over women, and, accordingly, the regulation must either be altered so that it mandates coverage of fertility drugs for women, or that the government must retract the requirement that states provide Medicaid coverage of Viagra.
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Lack of recognition for women’s healthcare needs or the relegating of that healthcare apart from other ‘basic’ needs is furthered in passages specifically addressing sex and gender discrimination. In implementing policies that address reproduction and the reproductive needs and responsibilities of women as ‘extra’ or ‘additional’ insurers and employers perpetuate women as an underclass of workers while, at the same time, they assert that they are working for equality of the sexes. According to the authors of these narratives, the construction of a dichotomy between pregnant (or potentially pregnant workers) and those who are not or cannot become pregnant acts as a proxy for discrimination. For example: A second theory, reflected in federal statutory equality mandates, views sex equality as also applicable to reproducing persons. It understands discrimination based on pregnancy or other aspects of women's reproductive capacity as discrimination based on sex, requiring that women's pregnancy or contraceptive needs be treated as favorably as other, analogous conditions that also affect men. This view of sex equality understands that pregnancy and related conditions are often used as proxies for femaleness and excuses for sex discrimination. It thus carefully scrutinizes distinctions based on reproductive capacity or role as likely sites of unequal treatment. However, employers are able to use this dichotomy to their advantage in order to claim that they are not obligated, at least under gender discrimination legislation, to offer appropriate protections and accommodations. In the case of General Electric, regardless of the PDA, the defendant claimed that pregnant women do not constitute a protected class of citizens: Gilbert deemed pregnancy-related disabilities "extra' disabilities" that were mere "additional risks" occurring outside of General Electric's disability benefits plan. Gilbert believed that "it is impossible to find any genderbased discriminatory effect in this scheme simply because women disabled
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as a result of pregnancy do not receive benefits; ... gender-based discrimination does not result simply because an employer's disability-benefits plan is less than all-inclusive." General Electric's benefits exclusion did not affect all women employees (since not all women were pregnant), thereby assuming two things: first, that for a group to be discriminated against, it must be a "uniform discrimination," and second, that "pregnant women" did not constitute a class protected under Title VII. In a similar case, Geduldig v. Aiello, the court upheld the defendant’s claim that the disability policy discriminated not between women and men but between pregnant and non-pregnant persons: This theory has its most prominent legal statement in Geduldig v. Aiello, which held that denial of disability benefits for pregnancy-related disabilities while providing coverage for other, similarly disabling conditions did not violate the Equal Protection Clause. Geduldig reasoned that the challenged disability policy discriminated, not between women and men, but between pregnant and nonpregnant persons (the latter group including both females and males). The Court thus eschewed the heightened scrutiny required of sex-based distinctions in favor of rational-basis review and upheld the exclusion based on the state's interest in fiscal integrity. Ultimately, since women are those who can become pregnant and not men, women are the only ones that are discriminated against: Boiled down to the bottom line, this reasoning from Geduldig separated the beneficiaries of the California plan into two groups: pregnant women, who were refused coverage, and nonpregnant persons, who were not refused coverage. The discriminatory effect of this division (that was ignored as "sex discrimination" by both Geduldig and Gilbert on a "condition-based" coverage theory) was that the only sex that could be omitted from coverage for pregnancy, of course, was women. According to the narratives, this is often what occurs--dichotomies are constructed, which may or may not seem logical, in order to protect employers and insurers from undue
178 financial strain. In the case of infertility, it is claimed that not offering coverage for fertility treatments does not discriminate against the infertile: The district court held that although infertility is a disability within the meaning of the ADA under Bragdon, the plan's exclusion of certain infertility treatments performed on women only did not violate the ADA because the plan offered the same insurance coverage to fertile and infertile employees. In contrast to defendant’s claims, many of the legal scholars note that understanding the implications of sex and gender differences in reproduction and reproductive roles is vital in the effort to gain sex and gender equality. In discussing the Geduldig case, this author discusses the discrimination and the division of labor and motherhood: In sum, although women are, in the narrow sense of Geduldig, differently situated from men due to the distinct reproductive capacities of each sex, the law of sex equality - constitutional as well as statutory - should prohibit discrimination based on pregnancy, childbirth, and related conditions. Those aspects of women's reproductive distinctiveness have historically been a touchstone of the sex-based division of labor that so much of our equal protection law aims to uproot. Discrimination against women as mothers or potential mothers remains a widespread equal protection and reproductive freedom problem today, and recognizing equality claims in the reproductive health area is one step toward addressing that problem. Put differently, equal protection should not stop at rooting out discriminatory treatment of similarly situated women and men, but should also assure that implicitly male norms of the reproductive role are not unreflectively accepted as the measure of equality, thereby disadvantaging most women. Other scholars note the disparities in men’s and women’s experiences of infertility which are further complicated by disparate health effects. Evidence citing the emotional, psychological and physical toll that infertility takes on women as grounds for protective measures:
179 What the Second Circuit did not consider is the significant evidence suggesting that the emotional and physical toll of infertility disproportionately affects women. One recent survey of the literature on gender differences in psychological reactions to infertility concluded that in comparison to infertile men, infertile women report: a higher degree of anxiety, depression, and loss of self-esteem; lower sexual and marital adjustment; and more feelings of guilt, inferiority and isolation. The authors also noted that "the negative effects of infertility on quality of life have been shown to be stronger for infertile women compared to infertile men." Relying in part on the PDA, the [Erickson] Court held that "male and female employees have different, sex-based disability and healthcare needs, and the law is no longer blind to the fact that only women can get pregnant, bear children, or use prescription contraception." Indeed, the special or increased health care needs associated with a woman's unique sex-based characteristics must be met to the same extent, and on the same terms, as other healthcare needs. Specific cases where sex and/or gender discrimination are cited in the narratives include the cases of General Electric Co. v. Gilbert, Wisconsin Telephone v. Department of Industry, Labor & Human Relations, Erickson v. Bartell Drug Co., and RayOVac v. Department of Industry, Labor & Human Relations. These cases are important to consider as they are reported as chronological and epistemological hallmarks that highlight changes in both legislative and judicial responses to sex and gender discrimination. They are also reportedly important because they show that defendants, usually in the form of employers, appear to rely on the same arguments to uphold their claims over time. The case of General Electric Co. v. Gilbert is cited often and is the seminal case from which the Pregnancy Discrimination Act was formed. It remains pertinent in the literature as similar claims are being made today regarding infertility treatments as were being made in 1976 about pregnancy—that infertility is not gender-
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related but condition-related making sex or gender discrimination claims seemingly unviable. In Gilbert, the Supreme Court, disagreeing with "eighteen federal district courts and all seven federal courts of appeals" that had previously grappled with this question, held that an employer's "disability-benefits plan [did] not violate Title VII because of its failure to cover pregnancy-related disabilities." In other words, to the Gilbert court, a comprehensive plan excluding coverage for pregnancy, a condition felt only by women, did not discriminate against women. Under Gilbert, the condition of pregnancy did not equate to sex, and refusing to cover pregnancy in a comprehensive disability insurance plan did not equate to refusing to cover women in general. "The Court concluded that this exclusion in the company's benefits policy was not gender-related but condition-related" and "because the plan did not exclude any disability that could be incurred by both men and women, it was not discriminatory." Here, sex discrimination is explained as per Title VII: In a direct response to the Supreme Court holding in Gilbert, Congress decided it was time to clarify what the Title VII prohibition against sex discrimination was meant to do and redefined the scope of the law by re-defining "sex discrimination" in Title VII. n174 The PDA added the following language to Title VII: (k) The terms "because of sex" or "on the basis of sex" include, but are not limited to, because of or on the basis of pregnancy, childbirth, or related medical conditions; and women affected by pregnancy, childbirth, or related medical conditions shall be treated the same for all employment-related purposes, including receipt of benefits under fringe benefit programs, as other persons not so affected but similar in their ability or inability to work… In the case of Wisconsin Telephone v. Department of Industry, Labor & Human Relations the viability of pregnancy related leave itself was not at issue but rather focused on the amount of time specified for such a leave. In this case, however, the court found that this practice was discriminatory towards women based on state regulations on disability leave.
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In Wisconsin Telephone Co. v. Department of Industry, Labor & Human Relations, the employer-sponsored policy mandated that women take leave for an approved fixed amount of time if the leave was due to her pregnancy, but allowed more flexibility for all other short-term disability leave. According to the Wisconsin Supreme Court, "the broad purpose of the [Wisconsin] Fair Employment Act is to eliminate practices that have a discriminatory impact as well as practices which on their face amount to invidious discrimination." The Wisconsin Supreme Court therefore held that treating a pregnancy-related disability differently from other short-term disabilities, without an adequate business justification, constituted sex discrimination in violation of the WFEA. In a similar case, Ray O Vac v. Department of Industry, Labor & Human Relations, the employer also sought to stipulate short-term disability leave for pregnancy and childbirth (up to six weeks) differently than other types of short-term disability (up to twenty-six weeks). Again in this case, the defendant attempted to lump employees into two classes that they deemed as unmarked by sex or gender differences: pregnant employees and non-pregnant employees. The court found that pregnancy is founded in sex differences and, therefore, found Ray O Vac’s policy discriminatory: The Wisconsin Supreme Court again explicitly rejected the Geduldig rationale, holding that it was not enough to treat all pregnant employees the same. "The relevant question," the court reasoned, was "whether, in light of its purpose, the effect of the benefits program is to provide disparate treatment for men and women employees." The court examined the eligibility standard, and the amount of benefits conferred, to determine whether men and women were treated similarly In answering this question, the court reasoned that "pregnancy is undeniably a sex-related characteristic," and that the statute clearly prohibited discriminating against employees on the basis of sex if the employer had no adequate business justification to do so. Subsequently, the court of appeals interpreted the Ray-O-Vac holding as providing "that when disability benefits are granted as a condition of employment each individual, whether man or woman, must have access to the same scope of benefits."
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More recently, in the case of Erickson and Bartell, plaintiffs sought redress from their employer for covering prescription contraceptives. The court found for the plaintiffs stating that, despite Bartell’s claims of facial neutrality, their insurance plan was discriminatory. Further, the court highlighted the import of contraception for women as the burden of reproduction lies on women. Therefore, the exclusion of such a benefit has a disparate effect on women. In holding for Erickson, the court stated first that "male and female employees have different, sex-based disability and healthcare needs, and the law is no longer blind to the fact that only women can get pregnant, bear children, or use prescription contraception." Even if Bartell denied coverage of contraceptives without an intent to discriminate against women, the court noted that an employer's decision to cover all drugs and devices, except a few, created a legal obligation for that employer under Title VII to ensure that the otherwise comprehensive benefits plan would "provide equally comprehensive coverage for both sexes," and also would "not discriminate based on sex-based characteristics." Since a large number of the excluded drugs and devices from Bartell's plan would only be prescribed to women, the plan was deemed facially discriminatory, showing disparate treatment of male and female employees covered under Bartell's prescription drug plan. The district court noted "that the goal of Title VII [and the PDA] was to end years of [employment] discrimination," including "overt discrimination toward pregnant employees," and that "equality under Title VII is measured by evaluating the relative comprehensiveness of coverage offered to the sexes." The Erickson court reasoned that in passing the PDA, Congress recognized not only that there are sex-based differences with regard to medical treatment, but also that employers may be required to provide women-only benefits in order to treat the genders equally. The court stressed that "the PDA [was] not a begrudging recognition of a limited grant of rights to a strictly defined group of women who happen to be pregnant," but rather "the intent of Congress [in passing the PDA was] to outlaw any and all discrimination against any and all women" in the employment setting.
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In examining these narratives another theme that emerged focused on reproductive healthcare rights as a foundation to achieving sex equality in U.S. society. The Constitution is invoked by some authors as evidence for this claim as is the Equal Protection Clause of the Fourteenth Amendment in addition to the Pregnancy Discrimination Act. In this account, reproductive rights are claimed to be fundamental to the individual as well as society in that individuals have the right to privacy and that women as a class of citizens have the right to equal treatment: Paradoxically, while reproductive rights should be doubly constitutionally protected by the overlapping liberty and equality guarantees, that dual pedigree can instead leave reproductive rights more vulnerable. Arguments from equality may be weakened by the sense that laws and policies need not change to be fairer to women if, supplied with the liberty to control fertility and have abortions, women thereby become "just like men." Meanwhile, to the extent that reproductive rights are important because they advance sex equality, support for abortion and other reproductive rights can be deflected into efforts to make society more equal in other ways for women, including women with children. We must eschew that shell game because the truth is that reproductive rights are important both for the reasons that the Constitution recognizes liberty rights to privacy and bodily integrity and for the reasons that it recognizes the right to sex equality. While this author focuses on reproductive rights and abortion the sentiment is the same: reproductive rights are inherently tied to sex equality. Although the Court's recognition of the connection between equality and reproductive rights has been incipient and fragile, equality is a natural conceptual partner to liberty in support of reproductive choice. Renewed attacks on abortion have turned attention to how the Equal Protection Clause, and the right to sex equality more generally, might advance reproductive selfdetermination. Controversy and conflict about abortion has also led some of us to seek new areas of agreement and better ways to move forward together. The turn to equality, properly understood, has the potential to do more than
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provide an alternative defense of reproductive rights; it brings into the open a truth that millions have experienced, which is that reproductive rights really are fundamentally about sex equality. And here, the case of contraception: One way of getting at that question is to examine the sex-based harm of insurance policies that exclude contraception. Is the discriminatory harm the meeting of all male health needs while meeting female needs, minus one? That is plainly a large part of it. The courts that have found discrimination in contraceptive equity cases point to the disjuncture between comprehensive coverage of drugs and devices needed by men, and incomplete coverage of drugs and devices needed only (and pervasively) by women. The exclusion of "contraception" from a list of covered drugs and devices, when that term refers to something exclusively needed by women, equates the exclusion to one which expressly says "female contraception is excluded." The latter is plainly sex based, and the former (really identical) exclusion is, too. To deny it would be akin to saying that heightened equal protection scrutiny is inapplicable to a government job announcement saying "candidates with breasts need not apply"; the excluded category equates to the category of women, while barely avoiding saying so. That is clearly a form of sex discrimination, and the contraceptive equity decisions correctly recognized it as such. 5.3.2.2. Infertility: The Disability That is Not One In this set of passages, rather than referring to a definition of infertility and its characteristics, infertility is characterized by what it is not. These types of characterizations are mainly cited as counterarguments to discrimination claims brought against employers under the Pregnancy Discrimination and Americans with Disability Acts. The consistent theme in this section regards claims that infertility is not related to pregnancy and childbirth and is a gender-neutral condition. It is restated that reproduction in general is not a major life activity but that having children is lifestyle choice, or consumption decision, that goes to a person or couple’s quality of life.
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Therefore, stigma claims are perceived as tenuous at best. Further claims are made that infertility is not a tangible condition for which there is a standard of care /treatment. One of the main difficulties noted that women with infertility encounter when employing the PDA as precedent for suits against employers is that defendants claim that infertility is not covered under its auspices. According to these claims, infertility is not viewed as being related to pregnancy and childbirth. And, many times it appears as though the court has accepted this justification. In these two passages infertility is constructed as beyond the scope of pregnancy and childbirth because it occurs before conception: The court, when analyzing the PDA's second clause concerning "pregnancy, childbirth, or related medical conditions," held that the plain language does not suggest that the "related medical conditions" phrase should extend beyond "pregnancy" and "childbirth." Pregnancy and childbirth occur after conception and are accordingly distinguishable from infertility, which prevents conception, and thus the court concluded that infertility is not akin to pregnancy and childbirth. One approach utilizes a biological interpretation, limiting the scope and reach of the PDA to women who are actually pregnant. The Eighth Circuit advocated this interpretation in Krauel v. Iowa Methodist Medical Center, in which the court considered the PDA's applicability to coverage for infertility treatments. While admitting that the PDA did extend to "potential pregnancy" because only women had such potential, the court decided that infertility was outside the scope of the PDA. Infertility occurs prior to conception rather than after conception, as is the case with pregnancy, childbirth, and related medical conditions. In other cases, infertility was framed as a gender neutral condition in that men can suffer from infertility as well as women. Therefore, in these claims it is stated that
186 women don’t need protection any more than men do from discrimination based on this condition. In contrast to the district court, the appellate court held that infertility is not a "pregnancy related condition" under the plain meaning of Title VII as modified by the PDA and Johnson Controls, which addresses "childbearing capacity," but not "fertility alone." It reasoned that for a condition to fall within the PDA's inclusion of "pregnancy . . . and related medical conditions" as a sexbased characteristic, it must be unique to women. Infertility is a medical condition that afflicts men and women with equal frequency, and the exclusion of surgical implantation procedures disadvantages male and female employees equally. Thus, an infertility-based distinction is not a sex-based distinction prohibited by Title VII. In the following it is noted that an appellate court overturned a district court’s ruling in favor of a woman with infertility using the same logic: Applying this standard, the appellate court found that "although the surgical procedures are performed only on women, the need for the procedures may be traced to male, female, or couple infertility with equal frequency. Thus, surgical impregnation procedures may be recommended regardless of the gender of the ill patient." Thus, the court reasoned, because exclusion of surgical implantation procedures disadvantages male and female employees equally, the plan does not discriminate on the basis of sex. The chief claim made relating to infertility and American’s with Disabilities Act is that, despite the Supreme Court’s finding, reproduction is not a major life activity. The court in the Bragdon case set this precedent. However, as noted below, there are many critics of this ruling. One of the critiques of labeling reproduction as a major life activity is that it is not a daily occurrence. Further, reproduction is not a biological function that is required to carry out a ‘normal’ day-to-day life. According to this line of logic, infertility cannot and should not be labeled a disability. In particular, Rehnquist noted that the statute defines a disability
187 as impacting a major life activity of such individual. After bemoaning the "inartful" usage of the term "activity" to describe the "process" of reproducing, Rehnquist's opinion attacked the majority's construction of the term "major" for ignoring what he saw as the common thread linking all the activities listed in the regulations together - "repetitively performed and essential to the dayto-day existence of a normally functioning individual." Here, Rehnquist is quoted more in depth regarding what constitutes a major life activity and how that determination should be made:
While reproduction decisions are "important," importance is not the "common thread linking the statute's listed activities." Instead, the activities noted-"walking, seeing, hearing, speaking, breathing, learning and working" are "repetitively performed and essential in the day -to-day existence of a normally functioning individual." Chief Justice Rehnquist said such activities are "quite different from the series of activities leading to the birth of a child." Although physiological disorders affecting the reproductive system are in the "physical impairment" definition of the ADA that does not mean reproduction is a major life activity. The Runnebaum court went further in claiming that reproduction and sexual activity: …were not significant and therefore do not constitute "major life activities"… [further the court] found the word "major" to mean "demanding great attention or concern." Based on this definition of "major," the Court found that the definition suggested that not all life activities were covered, and that those activities which were relatively less significant than others would not qualify. The Court was "unconvinced" that "engaging in intimate sexual relations falls within the statutory rubric of the major life activities. An important consideration in the narratives that characterize reproduction, and therefore infertility, as conditions that do not require any special accommodations is the assertion that family building is a voluntary, individually chosen activity that has no public dimension. For example, it is cited that the Krauel, the court found:
188 …three grounds for dismissing [the] claim under the ADA. First, the court held that there was no discrimination under the statute, since reproduction was a "lifestyle choice" and not a "major life activity" that occurred on a daily basis. Unlike the other listed terms, the court noted that, "Some people choose not to have children, but all people care for themselves, perform manual tasks, walk, see, hear, speak, breathe, learn, and work, unless a handicap or illness prevents them from doing so." Thus, the frequency and universality of the listed "major life activities" were used as evidence that reproduction should not be included. And even within this set of data the issue of gender disparity in reproductive treatments crops up: Some insurance companies have taken the position that Viagra is a "medical necessity," but fertility treatment involves a "lifestyle choice" and is not a "medical necessity." Perhaps the difference in insurance coverage of Viagra and fertility treatments is due in part to gendered views of the importance of reproduction and sex. For years, women have lived with the reality that contraceptives and fertility treatment are not generally covered by insurance. Conversely, within two months after Viagra was introduced, a group of men filed a class action suit against their insurer, which had limited the number of Viagra pills it would cover each month. The men argued that they had been denied treatment for a "vital human function." Here, the author champions the individualistic view of reproduction in so far as to characterize infertility treatments as a consumable, luxury good: Experience tells us that infertility is not a disability in the same sense as the loss of a limb or a degenerative disease. Infertility poses no threat to the patient's physical health if left untreated. Aside from the psychological trauma that might accompany diagnosis, it does not directly affect the participation of men or women in the economy or in public life. All told, infertility treatments can be fairly criticized as a luxury item in a health care market that leaves millions without basic services. And, in considering the deductibility of infertility treatments, tax law is also cited as shoring up these notions:
189 In spite of the fact that fertility treatment expenses seem to fit the medical expense definition, it is possible to argue that fertility treatment expenses are nonetheless nondeductible under 213, because the decision to bear children is a personal consumption decision, not a medical decision. For purposes of defining the scope of the business expense deduction, the tax law has consistently treated child rearing as a form of personal consumption. It appears that these narratives reduce the issue of reproduction, in general, and infertility, in particular, as quality of life issues above and beyond the “baseline of health.” The insurer's representative implied in testimony that, since the Witcrafts were "healthy individual(s)," and infertility is not an illness, treatment of infertility is a "quality of life" issue rather than a medical necessity. Similarly, insurers may attempt to classify Viagra as a "quality of life" treatment and not a medical necessity Professor Calvin Johnson argues that the medical expense deduction applies to losses incurred to try to return the taxpayer to a baseline of health; bearing a child makes the taxpayer better off, so fertility treatment does not fit the rationale for the medical expense deduction. In his view, "children are neither a broken leg nor a disease." Other characterizations go even further, alleging that infertility is not a “tangible” condition or illness and, therefore, cannot be characterized as a disability. Although patriarchal assumptions of women's roles have strongly influenced this social construction of fertility, it is impossible to deny that the distinction between genders is largely defined by the reproductive capacities and roles of women and men, and that infertility uniquely interferes with the self-identity of many women. However, it is still a leap to equate this psychological interference with other disabilities that have more tangible and frequent manifestations, such as paralysis, hearing loss, or blindness. Following this line of thought, there are a number of passages wherein this confounding message is presented: infertility is not considered a disability because it is not an illness and has no curative treatment.
190 Because Jill Witcraft ovulated irregularly, Thomas Witcraft's sperm count and motility were abnormally low, and a previous attempt to conceive their second child by artificial insemination had failed, the Witcrafts underwent a specialized insemination procedure designed to improve sperm motility. The same health plan which had paid for the earlier treatments denied this claim, because the "services were not performed because of an illness or injury," the "condition of nonpregnancy is not an illness," and "artificial insemination to change that condition is not treatment of an illness." Insurers did not begin to specifically exclude infertility treatments on a routine basis until the early 1990s. Prior to that (and continuing today even with the advent of specific exclusions), insurers generally raised three arguments in support of their denial of coverage. Insurers asserted that 1) infertility is not an "illness, "artificial insemination is not a "treatment," and 3) infertility treatment is not "medically necessary." This argument is based on the simple contention that "although improper function of ovaries or testicles may be an illness, the condition of being not pregnant is not an illness." Therefore, any procedure used to change that condition, such as artificial insemination, is not compensable under an insurance plan that only provides coverage for "illnesses." In this light, claims that infertility is a stigmatizing condition are questioned within this set of narratives: Stigma is relevant as a way of identifying those conditions that are likely to attach to systematic social disadvantage. The argument that "infertility" in all its myriad forms is so broadly discrediting in the eyes of society as to lead to such systematic disadvantage is questionable. 5.4. Narratives of Rights and Responsibilities: Implications of Self-Labeling as Disabled 5.4.1. Personal Implications Legal scholars’ accounts of the implications of infertility as a private trouble highlight its stigma and allow us to see its discrediting and discreditable effects. Within these accounts scholars also discuss the effects of self-labeling as disabled. In their
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narratives they consider the notion of private troubles in light of what is termed negative rights. As framed herein, negative rights allow us to understand how women with infertility can construct a disabled identity that can be useful when seeking treatment. Negative rights focus on individual rights: the rights for safety, self-determination, and privacy. The obligation of others from a negative rights perspective is not to interfere with or impede these rights. However, there is no obligation on others to provide resources in order for negative rights to be upheld. As C. Wright Mills noted, in order for a private trouble to become a public issue that requires a public response there must be a threat to the social structure ([1959]2000). A public response often involves accommodations via positive rights. Here the author describes the difference between negative and positive rights: …negative rights are supposed to be philosophically more fundamental, as well as morally and practically easier to grant, than positive rights. They do not cost social resources, and so ethicists may treat them as "trumps" to be honoured even before questions of collective good and allocation are raised. John Rawls proposes a first principle of justice that should always take precedence over other criteria: "each person is to have an equal right to the most extensive basic liberty compatible with a similar liberty for others." In this example, the author narrows the focus of negative rights to those negative rights that have to do with reproduction: A fundamental distinction is usually drawn between positive rights and negative rights in reproductive ethics, in bioethics, and in Western-style ethics in general. While positive rights require that persons or organizations other than the rights-holder must perform particular actions, negative rights require only that others refrain from acting. This distinction is echoed in law and public policy. For instance, U.S. Supreme Court decisions hold that a pregnant woman has a (negative) right to seek out abortion but no (positive) right to receive state assistance or the use of state funds in doing so.
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Further narrowing the conditions of negative rights to those concerning infertility, many passages considered the bioethical ramifications of IVF in considering negative rights and reproduction. In this passage, the author discusses the reasons that infertility should be constructed as a strictly negative right: It makes sense, therefore, to say that the right to IVF treatment for infertility (if any) should be a negative right - that it should include only the basic liberty to be left alone to pursue treatment, but not any claim on societal resources. A right to IVF would be derived from the right to reproduce oneself, whose fulfillment in most ways (including finding a partner) is left up to the individual. If the procedure itself is relatively safe and ethically permissible - as a growing number of ethicists and medical practitioners would have it - but too costly for society to bear the expense, then those who seek its benefits should be free to do so, but would have to pay the cost in full. This would appear to be an ideal domain for leave-me-alone rights. Advocates of the leave-me-alone right to IVF would portray it as beneficial to some infertile couples and virtually costless to society. So, while negative rights give those seeking infertility treatment the right to do so they do not address issues of equality. This is an important consideration for this project as an overriding theme found in the law review articles is that of inequalities constructed on the basis of sex and gender. In fact, the recognition of negative rights is framed here as promoting social inequality based on assumptions about gender and which returns us to the notion that treatment is a “lifestyle choice”: Because of this assumed link between gender and infertility, decisions about fertility treatment are often related to or motivated by gender-based assumptions. This is illustrated by a closer look at two common justifications for excluding insurance coverage of infertility treatment - that treatment is "unnatural" and merely a "luxury" or "lifestyle choice," and not medically necessary. In some cases, this bias may be subtle, if not completely hidden. For example, the characterization of infertility treatment as not medically necessary may simply be due to ignorance of the medical causes and forms of infertility.
193 However, when such justifications are probed, they often reveal deeper assumptions about women's responsibility for causing the infertility, rooted in an ideology about women's reproductive role in society. In this passage, the disparity of costs is noted: …negative rights as a category are deceptive and tend to promote social inequality. There is nothing inherently more fundamental or costless about negativ e rights than positive rights. The difference is rather that positive rights make their costs known explicitly and tend, indeed, to overstate their net costs; negative rights tend to conceal their external economic and social costs. This explanation helps us to understand then how granting standing under a protective act, such as the Pregnancy Discrimination Act or the American’s with Disabilities Act, does not necessarily mean that others must provide accommodations or support—in other words there is no requirement to provide positive rights. There are numerous accounts concerning this type of double bind in the data many of which discuss how hopes for gaining positive rights rested on the Bragdon ruling and how many of these hopes have been dashed. Three years have passed since the Supreme Court recognized reproduction as a major life activity in Bragdon v. Abbott. Although numerous courts have applied the rule laid down in Bragdon, they continued to hold that an employer's failure to provide infertility insurance does not violate the ADA. Based on a close reading of the events following the Supreme Court's momentous decision in Bragdon v. Abbott and the battles in the circuit courts over the scope and purpose of the Americans with Disabilities Act, it appears as if the tide is moving away from infertile couples and their dreams of insurance coverage that could help ease the financial burden of achieving a successful pregnancy. The general acceptance of infertility as a disability has not resolved the debate as to whether employers can specifically exclude medically necessary infertility treatments without actuarial justification under the ADA. The Saks decision illustrates that this debate continues.
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Another passage concerning the Saks decision broadens the discussion of the implications this particular bind include all those who may be considered disabled: Despite having held that all clinically diagnosed infertility was a disability because it intrinsically limited the major life activity of reproduction, in the context of surgical impregnation procedures the court in Saks seemed perfectly comfortable arguing that treatment-based exclusions did not single out the disabled. It is often said that a woman cannot be "a little bit pregnant." However, infertile women seem to be viewed by the Saks court as only a "little bit disabled," and therefore only a little bit entitled to the same protections as other members of their protected class. The holding in Saks presents dramatic implications not just for the infertile and their advocates, but for all persons committed to the rights of the disabled under the ADA. The burden of proof, including proving discrimination, for a disability claim and the tracking of compliance is another responsibility that falls on the individual seeking both negative and positive rights. Regardless of whether a claim under the ADA is based on Title I or Title III, "discrimination" must be proven. Each section has distinct requirements for what must be proven in order to show discrimination… Much like the leaders of the civil rights battles fought before them, people seeking to vindicate their rights as disabled individuals must now advance theories of "disparate impact," where uniformly applied criteria have an adverse impact on an individual with a disability or a disproportionately negative impact on a class of individuals with disabilities. These claims must be articulated in such a way that questions of access are implicated, as opposed to questions of content. Specifically, the complaining party must prove that the procedures in question adversely select applicants on the basis of disability. The Chief Justice's dissent in Bragdon, however, raised a pertinent issue not directly addressed in Justice Kennedy's opinion: whether a "disability" determination must comprise an individualized inquiry. The Chief Justice argued "major life activity" decisions require individualization. He cited ADA 12102(2), which states that a disability determination must be made "with respect to an individual," and ADA 12102(2)(A), which provides that a "disability"
195 includes "a physical or mental impairment that substantially limits one or more of the major life activities of such individual." The requirements and the continued contests over defining what a major life activity entails is comprised of often make it difficult for those with infertility to gain standing under the ADA or the PDA. The time and money involved in making such a case where results are so uncertain and that eat away at the potential of using those resources towards becoming a biological parent may keep the infertile from pursuing a legal course of action to gain standing or accommodations. Here, the author reminds us that these confounding factors provide employers no compelling reason to protect or accommodate individuals with infertility: Although a court may hold that infertility is a disability within the meaning of the ADA, so long as insurers and employers offer the same insurance coverage to all its employees, they do not violate the ADA by refusing to cover infertility treatments. Similarly, courts disagree on whether infertility is a "related medical condition' under the PDA. Thus, neither the ADA nor the PDA are useful in compelling insurance companies to cover the costs of infertility treatments. 5.4.2. Social Implications According to these narratives, the social and cultural implications of negative rights are positive rights. As in C. Wright Mills model of linking private troubles with public issues, negative rights are linked to positive rights. Negative rights afford individuals the opportunity and freedom to pursue activities within a normative social structure. Positive rights afford individuals access to public resources in order to pursue those activities. Positive rights are claims that we legitimately make on society that certain needs be met or certain services be available for our use. To claim a positive
196 right is to claim that others have a responsibility to facilitate one's claim, not simply to leave one alone. When we consider the issue of converting a negative right to a positive one, we must consider the cost of this conversion. As a society, we must decide what rights should be positive, or public funded, and who should receive these rights. We almost must consider whether or not one person’s positive rights are too much of a burden on another’s negative rights. Positive rights, because they require specific commitments of resources, are second to be granted and less morally compelling. Each must be weighed against the others in a public balancing and budgeting process. Moreover, the set of positive rights as a whole is potentially in conflict with contributors' (especially taxpayers') negative right to do as they will with their money, a muchemphasized component of their right to be left alone. There is inherently "a potential for conflict between the negative rights of taxpayers to expend their resources as they see fit and the positive rights of recipients of government support who require it to maintain a decent level of existence." Here the author discusses this conversion in conjunction with public health care: Similarly, one finds arguments that any putative right to health care would infringe on physicians' and other providers' rights to be free from coercion. It may sometimes be good and appropriate to institutionalize a positive right, these analysts allow, but to justify doing so, one bears a higher burden of proof than to justify costless negative rights. And, here, in considering reproductive rights: A fundamental distinction is usually drawn between positive rights and negative rights in reproductive ethics, in bioethics, and in Western-style ethics in general. While positive rights require that persons or organizations other than the rights-holder must perform particular actions, negative rights require only that others refrain from acting. This distinction is echoed in law and public policy. For instance, U.S. Supreme Court decisions hold that a pregnant woman has a (negative) right to seek out abortion but no (positive) right to receive state assistance or the use of state funds in doing so.
197 The notion of negative rights gives the impression that self-labeling as disabled would provide social confirmation that those who live with the condition of infertility are worthy of social support. Indeed, from the Bragdon decision it appears that a positive right has been constructed for those who suffer from infertility in that reproduction and sexual activity were deemed major life activities under the ADA. Infertility is unquestionably an impairment which prevents reproduction, and, therefore, such claims appear to have substantial support in the Bragdon decision. Although there are currently no reported decisions at this time, it has been reported that "[a] growing number of infertile people have sued their employers and insurance companies, claiming [that] refusal to cover their condition or provide time off for treatments, is discrimination." As stated previously, a balance must be struck between the abstract ideal of a positive right with the concrete reality of access to financial resources to support it. In these passages, the authors claim that providing infertility treatment as a positive right will have a detrimental effect on insurance rates for employers mandated to provide such coverage: Such an influx of litigation concerning infertility, if deemed protected by the ADA, is certain to have a marked effect on both employment and insurance coverage rates. …evidence shows that many employers expressly do not want to cover infertility treatment because of the concern that too many women would take advantage of it…In this respect, an employer's reason for denying infertility benefits may merely be an extension of the same biases that have formed the basis for a pervasive history of pregnancy-based employment discrimination - the type of bias the PDA was expressly enacted to prevent.
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In contrast, other authors discuss the potential for positive rights for those with disabilities, and infertility as a form of disability, in lowering levels of discrimination and increasing public understanding of infertility and its individual and social effects. …it is clear that discrimination extends beyond the most blatant forms of exclusion based on open prejudice ("outright intentional exclusion") to reach the effects of neglect and indifference. Two dimensions of the nondiscrimination mandate are particularly important in relation to subtler forms of discrimination. First, the ADA is a challenge to the myths and stereotypes embedded in many social arrangements - social arrangements not easily recognized as discriminatory because they are facially neutral and are not motivated by animus toward people with disabilities. Equal protection opposes sex-based disregard of individual qualities in part because that disregard reinforces historically entrenched gender hierarchy. Stereotyping makes patterns of inequality seem more natural, inevitable, and even invisible….Disability rights law can therefore be seen as providing members of that subordinated class with the means (antidiscrimination and reasonableaccommodation requirements) to challenge the practices that enact and enforce their subordinated status. In creating standing as a protected class, these passages indicate that those with infertility may expect positive rights and, therefore, reasonable accommodations from employers and protections against discrimination by the government. Regardless of the expectation that positive rights will provide protections and accommodations many of the legal narratives reveal that discrimination, particularly sex discrimination, persists in our society: Anecdotal evidence also reveals a pervasive practice among women who hide the fact that they are receiving infertility treatment and their plans to have a child in general for fear of discrimination by their employers. Congress' purpose for the PDA was to "clarify [its] intent to include discrimination based on pregnancy, childbirth or related medical conditions
199 in the prohibition against sex discrimination in employment." The House Report discussing the creation of the PDA showed that the law was created not to "reflect [a] new legislative mandate of the Congress ... . [but] to eradicate confusion by expressly broadening the definition of sex discrimination in Title VII to include pregnancy-based discrimination ... [and] to clarify its original intent." The narratives claim further evidence for sex and gender discrimination in examining court rulings regarding equal access to health care treatments. The following decision is cited as an example of what sex discrimination is and how it operates in the case of infertility. The issue was not equal access to a single set of benefits, but whether the set of benefits provided equitable coverage to women and men. In the words of the court, the "proper inquiry in reviewing a sex discrimination challenge to a health benefits plan is whether sex-specific conditions exist, and if so, whether exclusion of benefits for those conditions results in a plan that provides inferior coverage to one sex."…Applying this standard, the appellate court found that "although the surgical procedures are performed only on women, the need for the procedures may be traced to male, female, or couple infertility with equal frequency. Thus, surgical impregnation procedures may be recommended regardless of the gender of the ill patient." Thus, the court reasoned, because exclusion of surgical implantation procedures disadvantages male and female employees equally, the plan does not discriminate on the basis of sex. The argument here is that despite the fact that surgical embryo implantation occurs only for women non-coverage of this treatment disadvantages men and women equally and, therefore, it is not discriminatory on the basis of sex or gender. Those who claim women’s reproductive bodies are at the heart of social inequalities in our society both uphold and renounce this type of ruling. On the one hand, providing women with ‘extra’ benefits in order to level the playing field is lauded. On the other, it is seen as a further entrenchment of traditional women’s roles:
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…proponents of this "equal treatment" approach advocate extending pregnancy disability leave to all disabled workers to avoid the stigma of stereotyping all women as "potential mothers," a stereotype that feminists had worked so hard to overcome in the preceding decades. On the other hand, "special treatment" advocates support dissimilar treatment of men and women because reproductive reality places women at a disadvantage in the workplace. Delaying childbirth is one tactic that women employ in order to achieve career success first. Here several claims regarding delayed childbirth are made that illustrate the social double-bind working women who hope for a family later in life find themselves in: Delaying pregnancy has consequences, though, as only 1% of women aged forty-one to fifty-five who tried to conceive had a first child after age thirtynine. Additionally, data shows that a woman's most fertile years occur between the ages of twenty and thirty, with a decline of 20% at age thirty and a decline of 50% at age thirty-five. Advances in reproductive technological certainly hedge against these statistics, but the cost of such methods of conception are extremely high, health risks are associated with the procedures, and success appears to be minimal. Among the highest achieving women, 49% are childless, while only 19% of similarly situated men are childless. Thus, this scholar claims that young women are particularly vulnerable to discrimination: Substantive inequality in the modern workplace, then, can be attributed to both biological and sociological pressures that are exerted on young women. When a woman is planning her life, she must consider whether she wants to have children at a very young age. When making that decision, rather than following her true desire, she must take a good look at reality - women who have children often suffer severe professional repercussions. They are less likely to reach the highest ranks in any field, they must balance a demanding career while performing the majority of household chores and child-rearing tasks, and they are often left feeling unsuccessful either professionally or personally. If a woman wants to have children early in life, she may never achieve professional success, and if she waits to have children, she may never achieve motherhood.
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The role conflict that women face in attempting to maintain independent lives in which they can exercise negative rights carries through in seeking positive rights. Here, individuation of conditions is claimed to serve as a “gatekeeping function.” The "disability" category thus serves a gatekeeping function in the statute. If a person wishes to bring an ADA suit alleging that an employer discriminated against her or denied an accommodation that she needed to perform the job, she must first establish that she has a "disability" as defined in the statute. Even if she does so, however, she may not ultimately prevail. The statute forbids employment discrimination only when directed against "qualified" individuals with disabilities, and it mandates workplace accommodations only where "reasonable." The following passage portrays how the gatekeeping function is said to develop in the case of infertility: Despite having held that all clinically diagnosed infertility was a disability because it intrinsically limited the major life activity of reproduction, in the context of surgical impregnation procedures the court in Saks seemed perfectly comfortable arguing that treatment-based exclusions did not single out the disabled. It is often said that a woman cannot be "a little bit pregnant." However, infertile women seem to be viewed by the Saks court as only a "little bit disabled," and therefore only a little bit entitled to the same protections as other members of their protected class. The holding in Saks presents dramatic implications not just for the infertile and their advocates, but for all persons committed to the rights of the disabled under the ADA. The notion of equal life chances is invoked in many of the narratives—the idea that the combination of negative and positive reproductive rights for women should be provided by society as a way to alleviate the effects of gatekeeping and discrimination, such as the work/family dichotomy, in order to bring about sex and gender equality. Reproductive choice is not only about avoiding unwanted pregnancy, but also about having wanted children…Our law, institutional arrangements,
202 and culture need to be restyled so that mothers are not routinely "mommy tracked," men are prompted to share in caretaking, and workplace and socialwelfare policies support women and men equally to realize their potential at home and work. The failures of our law, policy, and culture to do more to enable women and men alike to be both direct caregivers and successful working people interferes with genuine reproductive choice - and sex equality for all. Equal protection's basic commitment to the principle that biology need not determine destiny means that women (and men) must have equal life chances even though the sexes are biologically distinct. In particular, equality law increasingly apprehends the central role that both expectations about maternity and the realities of parenting play in sex discrimination. 5.4.3. Cultural Implications Culturally, infertile women labeling as disabled is portrayed as problematic for the women themselves and also for women and families in general. In these passages, the ills wrought by medicalization, a cultural phenomenon which includes who and what we see as disabled, is critiqued for several reasons. Technological ‘solutions’ are cited as being potentially useful in improving a condition but they may also limit other potentially positive personal, social, and cultural responses to them. Medicalization may offer the benefits of formal recognition and improved treatment for a painful or limiting condition. However, its possible adverse effects include obscuring the social and political context of the behaviour that is medicalized. Social and personal resolutions of personal problems will be obscured in favour of technical solutions. Critics of the medicalization of infertility contend that the reasons women feel unhappy when they cannot bear children are intensely political and need to be dealt with as such. Non-medicalized responses to infertility include grieving or accepting childlessness, changing sexual partners, forming a non-traditional or multiple parent family group, adopting or foster parenting a child, taking on a nurturing vocation, and rejecting one's own internalized social labels and demands for fertility. Many of these creative solutions are desirable social institutions in
203 their own right. Yet all of these alternatives lose some importance where IVF is an available and accepted remedy for infertility. In other words, it is easier to define the social problem of infertility or childlessness as a medical problem when a technical medical solution is available. Thus, the availability of IVF as a technical solution may effectively reduce an infertile woman's range of choices, as well as limit the society's resources for dealing with the problems of parenting and child rearing in general. Further claims regarding this aspect of medicalization highlight the potential for women and women’s roles to become further entrenched in their biological capacities rather than in the overall contribution that women can make to society. Other possible social costs of a leave-me-alone right to IVF treatment are less quantifiable but nonetheless real. Many of these fall under the following general categories: medicalization of human reproduction, privatization of children, devaluation of the disabled, and reinforcement of women's role as childbearers. …social pressure on women to bear children still exists in the developed world, and infertility is still perceived as the woman's medical problem more often than warranted. Therefore, it is reasonable to ask, even in the developed world, whether increasing opportunities for childbearing actually increases women's freedom or whether it sustains and validates an oppressive social pressure on women to bear children. It is also sensible to ask what opportunities for enhancing other broader freedoms for women might be forgone because of the emphasis on technologically assisted childbearing. …to make IVF available as a negative right is to authorize putting an enormous amount of effort into offering women more choices in the area of conception and childbearing. But all this effort might have been put into enhancing women's health, life choices, and possibilities for achievement in other areas. To concentrate on increasing opportunities for childbirth rather than improving women's lives in other possible ways is to reinforce the traditional and confining role of women as bearers and rearers of children. Many of the passages affirm that the desire to have and raise a child is deeply rooted in us, biologically, socially and culturally. However, it is also claimed throughout
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the narratives that contemporary cultural values concerning women, children and families are becoming more individualized through the notions of privatization and commodification. This is said to decrease the worth and importance of individuals rather than increase it. As it becomes possible for a greater range of infertile couples to conceive their own genetic offspring, there is a greater possibility that children will be valued for their possession of parents' genetic traits rather than simply for being human persons. Large amounts of money and effort are sometimes expended on IVF treatment for a (reproductively unimpaired) woman so that she may bear a child genetically related to her male partner. In such cases, donor insemination would be a much easier alternative for achieving a healthy pregnancy and birth. The effort expended suggests that a man's genetic offspring is measurably more valuable to him than his wife's child conceived by anonymous sperm…. Choosing to use reproductive technologies rather than adopting an infant conveys a similar message on the value of genetic relatedness. Such strenuously sought and dearly purchased genetic children may also run a higher than average risk of suffering from parental projection, of being molded into the fulfillment of their parents' dreams. Thus, the first aspect of privatization is the act of valuing a child for its possession of parental chromosomes and thereby possibly failing to acknowledge and love it as a unique human being. Sex and gender discrimination are noted throughout the law review articles concerning the lack of availability of medical insurance coverage and medical treatments for women—herein referring to women’s reproductive health. The recognition by the courts that infertility is a disability appears to be viewed in a positive light in many of these passages, a way to draw attention and resources to women and women’s needs. In the following passages, as in the last set, though, this assumption is tested. Here, unequal distribution of power within couples is noted as a potential source of coercion in choosing to make the decision to employ ARTs.
205 Leaving people alone to choose IVF treatment means, in practice, that we are leaving heterosexual couples alone to make this decision. Allowing such a choice also has micro-distributive effects within the heterosexual family because women do not have equal bargaining power within couples. Women still do not have equal income-earning capacity (even for the same skills), they are disproportionately the victims of domestic violence, and commercial images of feminine beauty make women physically unattractive as potential mates by middle life (while men continue to be attractive based on their social achievements). Thus, the asymmetry of bargaining power within couples is not limited to the developing world. 5.5. Summary The data in the law review articles provides a panoramic view of the extent to which women and women’s reproductive bodies are seen to perform as objects within our society. Many of the passages assert women’s right to social equality including rights to medical coverage for reproductive healthcare including access to ARTs. However, there is a strong cross-current of coverage within these sources that warns us of the negative impact that the technologies, and access to them, may have on women. Here, we are told that sex and gender discrimination remains somewhat commonplace in the workplace, particularly for women of childbearing years. In order to build a positive work history, women may delay childbearing and may find later that they are impaired in trying to have a child—both of which are stigmatizing to women. While trying to remain childfree during that time period they find that they must afford their own prescription contraceptives. During that time period, they may be portrayed by others as selfish and uncaring and still lesser workers than men who are their counterparts—even as they seem to constructing themselves as social men (Acker 1990). When they wish to become pregnant they are seen as lesser workers due to the demands of pregnancy and childrearing. And, if they find that they have difficulty in becoming pregnant they often
206 find that they must pay for assistance on their own. In asking for accommodations or special treatment they must out themselves as less than ideal workers and may receive admonishments, or worse, from their employers. Women seeking to employ the Pregnancy Discrimination Act or the Americans with Disabilities Acts as forms of protection designed to compel employers to recognize their special needs and assist them may find that the courts do not enforce the legislation in the ways expected. Herein, the comfort of finding a label for a medical condition, a place to fit in and be recognized as a person with both negative and positive rights is questioned. The social construction of disability is an important theme but the most prominent theme concerns the social construction of women and women’s roles in our society. According to these narratives unruly bodies are not only inhabited by women with infertility but by all women.
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CHAPTER 6. DISCUSSION, CONTRIBUTIONS AND FUTURE RESEARCH 6.1. Discussion 6.1.1. Introduction and Significant Findings Part of the object of this work, and as highlighted in Research Question 4, is to consider if, or how, notions of stigma, disability and self-labeling appear in narratives data across units of analysis—here personal interviews (individual), website materials (group) and law review articles (institution)—and whether or not they contribute to a meta understanding of infertility as a disability. The assumption set out in Chapter 2 is that each of the narrative sets are important elements in furthering our understanding of the experience of infertility as well as examining what they may contribute to an overarching story. Therefore, I first analyzed each data set and reported the findings individually in order to establish a base from which to observe how infertility is, or might be, constructed as a disability in each. In this chapter, I present findings based on a comparison of the major themes in each data set with the intent of discovering how the data highlight similar or different themes and whether these themes contribute to a metanarrative. Also included here is a brief discussion of these findings including a note on the pardigmatic lens through which different narratives contribute to a metanarrative. I then offer potential contributions that this work makes to the methodological, substantive and theoretical literatures cited herein. Finally, I offer suggestions for future research and a short reflection on what I feel that research will contribute.
208 In analyzing each set of data, I considered three research questions. To reiterate, they are: 1) Is infertility discrediting? If so, how, and if not, why not? Is infertility discreditable? If so, how, and if not, why not? Can it be both? Can it be neither? In what ways do these two phenomena interact? 2) In what way is infertility perceived to be a disability or similar to a disability? Are there ways in which infertility is perceived to be unlike a disability altogether? 3) How does self-labeling as disabled affect women with infertility, personally, socially and culturally? Does an "infertile identity" interact with a "disabled identity"? Does it subsume an infertile identity? Do women with infertility who self-label as disabled differ from those who do not? If so, how and in what ways? 4) Does the analysis reveal an overarching story of infertility as a disability among the data? If so, what is it? If not, why not? At what points do the accounts converge or diverge? In the personal narratives of individual women, the crucial findings for Question 1 were that most women with infertility experience stigma of both types, discrediting and discreditable. Here, its discrediting nature was denoted by a lack: a lack of a functioning reproductive body made visible by a lack of a pregnant body, a lack of a child. Its discreditable nature was denoted by isolation, chronic grief and fear of appraisals and/or discovery. In regards to Question 2, the experience of infertility as a physically and psychologically challenging, sometimes disabling, condition was noted. While the
209 narratives were not elaborate nearly all the narratives invoked the perception that infertility treatments are physically disabling as well as emotionally disabling. As for the Question 3, regarding self-labeling, and its affects, it became clear that while there was a range of response for such an option, the concept of having a standardized, medical definition such as ‘disability’ to employ as a tool to access resources was resoundingly heard throughout these narratives. In the RESOLVE narratives, the most prominent themes for research Question 1 also concerned the stigmatizing effects of infertility and of childlessness. In the majority of the narratives biological motherhood is stressed which again goes to the discrediting nature of childlessness in general. It is discreditable in that there is a lack of societal awareness as to the causes, trials and tribulations of infertility and the struggle to overcome that condition. Isolation and avoidance are tactics recounted again and again as strategies to avoid outing oneself as infertile and having to endure open person treatment. There is much talk as well about the need to recognize infertility as a medical condition, if not a disability per se. Here grounds are provided for the medicalization of infertility based on its stigmatizing qualities, its physical demands, statements from medical associations, statistics and proposed legislation. As for Question 3, here access to resources is again an overarching theme connected to self-labeling. The medicalization of infertility is presented as a way that individual women could mitigate their own stigma while, at the same time, ease their financial burden through better access to insurance coverage. In the law review narratives, the portrayal of the stigmatizing effects of infertility take a decidedly different hue. Here, the motherhood mandate and ideal worker norms are
210 most often invoked as sources of stigma, where women with infertility have identities that are both discrediting and discreditable. According to these narratives, women with careers have difficulty fulfilling one or both and women with infertility find this burden increased. When women have a career or job it is expected that they will not focus fully on their work due to family demands; when they have difficulty having children they aren’t satisfying the idealized feminine role of mother; and when they have a career or job for which they have delayed childbearing they are blamed for bringing on their condition. It is reported that all of these factors feed into the construction of workplace inequalities and discrimination based in sex and gender. In these narratives we find that the answer to Question 2 is, yes, infertility is a disability as outlined by the Supreme Court decision in Bragdon v. Abbott. A number of other cases are also cited within the narratives as are legal regulations and statistics—all used as grounds, along with the stigma of infertility, to uphold the contention that infertility is a disability. The noteworthy findings in the law review narratives regarding Question 3 are the ways in which self-labeling as disabled creates a double bind for women—especially those who take legal action to seek standing and accommodation within the law. Two examples of double binds found here are that receiving standing under the ADA for reproductive means has become easier across time, however, receiving accommodations from the courts and legislators in the form of financial support and work leave has not. Therefore, it appears that the effort involved in bringing such suits, and opening oneself up to scrutiny as both an infertile and a disabled person, may result in a further entrenchment of the stigma associated with this condition. Another example of a double bind is found in the narratives regarding women’s equality. Special considerations in the
211 workplace for women’s reproductive needs are cited as required if women are to achieve equality in the workplace. However, the issue of whether or not special considerations provide a more equal playing field for women in the workplace if they are not supported by enforceable legislation. One more example of a double bind is seen in the arguments regarding the use of assisted reproductive technologies themselves. Here the claims are either that women’s access to, and use of, assisted reproductive technologies provides them with more options in their lives or that they reify the motherhood mandate and further constrain women’s options. In response to Question 4, the narratives do hold similarities and their contribution to the meta-story of infertility as a disability emerges as one in which stigma, and suspicion of childless women, are deeply rooted in our society. In particular, the persistence of the “motherhood mandate” is seen throughout the data as is the pain women feel in not being able to bear their own children. Differences in the narratives occur in how these themes are presented and their prevalence. The focus of the interview narratives is the stigma of infertility and peoples’ responses to it. Infertility as a disability did not emerge naturally in the interview process but was recognized as a potentially useful label by the women interviewed. Stigma is also a major theme in the RESOLVE data but this set of data also includes warrants for medicalizing infertility and, in so doing, providing a warrant for the group’s continued importance in advocating and supporting those with infertility. The law review narratives build on the themes of stigma and medicalization. These narratives bring together the individual and group level in the claims made regarding disability and discrimination. They also are unique in that they emphasize that much of the discrimination that occurs is specific to sex and gender. In
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reading these narratives as a whole, how the ways that infertility is socially constructed as a disability comes to light. Those who suffer from infertility, particularly women, are read as both socially and biologically disabled. While this label seems problematic for many reasons, not the least of which is reifying the “motherhood mandate,” self-labeling as disabled may allow women with infertility to pursue treatment in the future without as much fear of retribution for their claims for accommodations. 6.2. The Story of the Social Construction of Infertility as a Disability 6.2.1. Metanarrative Throughout these narratives data sets, there are claims that infertile women possess identities that are both discredited and discreditable. The discredited nature of infertility is often tied to the “motherhood mandate.” Women without children, or who are not pregnant with a child, are suspect in that they are not fulfilling their social role of mother and not fulfilling socially prescribed gender role expectations. The discreditable nature of infertility is also tied to this phenomenon but is extended when women disclose that they have fertility problems. In the interview data, women claim to feel the effects of both types of stigma. They are discredited as they don’t have children and aren’t pregnant. They receive open person treatment regardless of whether or not they have made an effort to conceal their condition and their treatment. In disclosing their condition to others, they also become discreditable and open person treatment may turn into non-person treatment. Respondents ground their claims for the need for accommodations—particularly in the form of financial resources--on these individual experiences.
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Similar claims are made throughout the RESOLVE group data and they are employed as grounds for recognition of infertility as a medical condition. First, the narratives express distress at the stigmatization that infertile women and couples experience either through open- or non-person treatment—which appears to vary dependent on their disclosure status. In disclosing their condition to employers and insurers the infertile are said to become discreditable and often struggle to receive fair treatment, in the form of time away from work and access to insurance coverage for treatment. The second, that infertility is a medical condition that deserves recognition as a serious problem in our society. The public is presented as unknowing, uneducated and even as uncaring regarding the plight of those who are unable to accomplish parenthood unaided by medical technology. These claims for recognition are often grounded in the results of national polls, statistical data and expert opinion as well as in women’s own stories. The themes that emerged in the law review narratives regarding stigma reverberate with the other two sets of data. Infertility is viewed as discrediting, often and the notion of the “motherhood mandate” is often invoked in these discussions, and as discreditable through the discrimination women face when they do disclose their condition and seek accommodations. The law review narratives rely on legislation, regulations and case law—particularly the Pregnancy Discrimination Act, Americans with Disabilities Act and the Supreme Court ruling in the case of Bragdon v. Abbott—as grounds for claiming, nearly overwhelmingly, that infertility is a disabling condition for which women should receive accommodations.
214 As proposed in Chapter 1, the analyses of these data also indicate that women’s bodies play a central role in their own and others expectations of them, expectations that revolve around their ability to become mothers. There is an interesting juxtaposition of these expectations that is seen across the data—the body is both discussed as an object to be controlled, or uncontrollable, separate from the self when considering infertility as an individual experience, integrated with the self when considering how vital the body is to identity—and to becoming a biological mother. Medicalization of a condition often asserts itself in this way. In order to dissect a condition, bodies are discussed in terms of their structure and function. Examples of how this dissection occurs, of how the body becomes ‘abject,’ are especially visible in passages where the themes of inability and loss are recounted. Across the narratives, there are notations where women feel that their bodies are letting them down and are uncooperative, causing them serious emotional pain and casting doubt on their ability to fulfill their social role in society. The ability to have biological children is, therefore, of premier importance and makes overcoming the physical constraints of the body through access to and use of assisted reproductive technologies vital to overcoming the stigma of “failed motherhood.” Several themes regarding the personal and social implications of self-labeling as disabled were also consistent across narratives at all three levels the data sets. On the personal level, the notion of self-labeling as disabled is asserted to increase in recognition that infertility is a medical condition with far reaching consequences. Recognition on this level is viewed as a way to decrease stigma as well as psychological and emotional pain. It is also viewed as a way to potentially increase access to resources. Deviance is said to require a social response: medical conditions, like infertility, and those who suffer from
215 them are, in general, ostracized and/or ‘cured’ in order to conform to social goals. In the contemporary U.S., a disability label provides social standing the response to which is to develop special accommodations in order for those afflicted to conform to social goals. Infertility sufferers have been recognized as having standing under the law. Accommodations, while limited, have been enacted through a series of state mandates for insurance coverage. However, these mandates are not standardized and have been enacted by a minority of states. Further, none of them recognize infertility as a disability. Only the Supreme Court ruling in Bragdon v. Abbott, where reproduction was deemed a major life activity, has been employed to make that claim in other lawsuits. 6.2.2. Narrative Differences While most of the themes in the data sets were congruent, there were several unique themes that emerged primarily from the law review data. First, it is in this set of narratives that the concept of infertility as a disability develops as an explicit, not implicit, story. This is a surprising finding for several reasons. First, it is not referred to in any of the most cited social scientific literature on women and infertility. Second, because it is not referred to in the other sets of narratives employed for this project—this in spite of the fact that leaders from the RESOLVE organization are cited in some of the narratives. Both are noteworthy as Supreme Court decisions, like Bragdon v. Abbot, are “viewed as watersheds, as changing the course of American law” (Mertz 1996:136). Cases such as this are often heard in the highest of appellate courts because “they represent more widespread and highly charged splits within American society,” splits that through its rulings the courts attempts to mitigate—to restore social harmony (ibid). In providing a precedent for women with infertility to obtain standing under the American
216 with Disabilities Act of 1990 the court recognized a growing trend in reproduction, the need for and use of assisted reproductive technologies. However, as seen in a number of the law review narratives, we see that standing does not necessitate accommodations, including but not limited to financial assistance in obtaining treatment and flexibility in work schedules to allow for treatment. This may account for the absence of this plot line in the narratives concerning women’s experiences. The narratives of individual women and of the advocacy group both revealed that they are focused on gaining access to fertility treatment benefits through employer health insurance plans and not on pursuing a disability standing in order to gain accommodations. Perhaps the time, energy and monetary resources required to obtain standing that have regularly been granted but without accommodations has, after the time elapsed between the Supreme Court ruling (1998) and the time of data collection for this project (2007-2008), caused advocates to become disenchanted with pursuing this course of legal action. Another way in which the law review narratives differ from the other two sources is that it is here the notion of the “motherhood mandate” is specifically evoked and it is used as grounds in arguments for and against the sociolegal construction of infertility as a disability. This concept is also employed in stories regarding sex and gender discrimination, another theme not found in the other sets of narratives. In some ways, these last two findings are not surprising. Cases that involve discrimination are those that are most likely to shape legislation and congressional acts—as noted previously. It is an important underpinning of such cases, as well as to scholars constructing narratives about them to highlight the claims of unequal and/or unfair treatment within a social paradigm that remains contested (Mertz 1996). In employing sex and gender discrimination, and
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the motherhood mandate, the overwhelming challenges faced by women with infertility can take shape within a familiar narrative, that of equality, a fundamentally American value. In contrast, the importance of motherhood to women with infertility, and as portrayed in the RESOLVE narratives, emerges as a natural desire for women. Their inability to fulfill that desire leaves them to feel like failed mothers, or failed women, but nowhere in these narratives is it noted that women are discriminated against as women for not receiving accommodations under the law. In considering how self-labeling as disabled might affect the way in which a woman with infertility perceives her sense of self, the law review narratives provide two unique sets of findings. First, in considering how it might affect a woman personally, the idea that standing, as a negative right, and accommodation, as a positive right, are discrete entities constructs a double bind in terms of legal standing as well as in an emotional and psychological response —as it would be for others in the same position. Not only does a woman universally disclose her condition in order to bring a discrimination lawsuit, which is noted as a painful admission throughout this study, in finding that in so doing she achieves standing under the law but not increased access to financial resources for her treatment could result in a deeper sense of frustration as well as isolation. In outing herself publicly a woman has already made herself vulnerable to much wider range of open person treatment. Her condition is now recognized publicly as a disabling one—something that might actually bring a sense of relief that her condition is legitimate, that she is legitimate. However, in denying that her employers, insurers or the state have a responsibility to help her overcome her condition that sense of relief may
218 turn to frustration, anger and a re-entrenched sense of isolation—feelings that are already elaborated on by women in this study as daily emotional events. In considering the potential cultural implications, a subtheme in the law review narratives is that constructing infertility as a disability may actually be a constraint on women’s opportunities at home and at work. This claim is founded in the notion that labeling infertility as a disability may lead to a reification of the import of biological motherhood, further entrench women’s traditional roles in society, and thus thwart women’s advances in public life. These arguments are used as grounds to further claim that these constraints limit other culturally accepted options for caretaking and child rearing such as adoption and extended family care. Here assisted reproductive technologies and the medicalization of infertility are viewed as instrumental in maintaining sex and gender discrimination rather than as aids in overcoming it. In other words, recognition of infertility as a disability may actually construct yet another double bind for women with this condition. 6.2.3. The Metanarrative and Unruly Bodies As outlined in the previous section, the narratives do converge and construct a metanarrative, an overarching story about infertility as a disability. In combining these narratives we can view this story as the plot unfolds rather than as a fete accompli. I use the term plot here as I move into the notion of metanarrative as it is through understanding the different narratives and the paradigm within which they fall that such a story can emerge. As I noted in Chapter 1, I consider the frameworks of plot, chronology, space and theme as lenses through which to understand and interpret the data. I do not denote these paradigms throughout the text but they play an important part
219 in considering how a metanarrative is constructed. In looking at the separate sets of narratives, I employed a thematic paradigm and relying on this paradigm in my analysis enabled me to stay in tune with a grounded theory methodology. As a reminder, thematic narratives are comprised of lessons, points of contentions and details about events, actions, attitudes or phenomenon. After discovering the major themes that related to the sensitizing concepts I was able to consider each narrative within a spatial, chronological or plotted framework. A spatial framework emphasizes social locations and norms, a chronological framework is time or event ordered, and in a plotted narrative framework the context for an emergent story is provided by the characters—however they are defined within that source. For example, two themes that emerged in both the interview and advocacy group data relay the stigmatizing nature of the condition of infertility as grounds for the need for medicalization and resources. These themes can be analyzed in two different ways: 1) stigmatizing nature of infertility, and; 2) grounds for medicalization and resources. In considering these two different themes, a spatial theme regarding identity emerges across the sets of narratives as regards stigma and a plotted theme also surfaces where the stigmatized identities become the ‘characters’ through which we see the story of why and how medicalization and access to resources is important. Themes from the law review data narratives tells us that the interruption of reproduction is disabling—so much so that courts have ruled in favor of granting standing to sufferers in some cases. Standing appears as a label that is granted by the courts while gaining accommodations in order to achieve pregnancy has been less forthcoming. Again, the first theme here is one that is best viewed within a spatial framework and the second within a plotted framework.
220 The metanarrative is not without its complexities and contradictions, however. While it is interesting to see how the plot unfolds as I envisioned its original layout, I believe that it is significant that it is not a chronological one. The metanarrative appears as what we may expect to see as a movement building towards court and legislative successes. However, the law review narratives reveal that reproduction is already considered a major life activity under the rubric of the ADA. The first of its kind ruling occurred in the Supreme Court case of Bragdon v. Abbot in 1998, a fact of which I was unaware. The interviews and advocacy group data show no indication that this event even occurred despite the fact that this case occurred nearly ten years before I began this project. This information could potentially be employed by both individual women and by RESOLVE as grounds to mitigate stigma through infertilty’s medicalization— something that both narratives relate as an important topic. In looking at the stories in reverse order, it is as if the cases of Bragdon v. Abbot, Saks v. Franklin Covey, Erickson v. NIU, among others, never occurred. Similarly, while we may have expected to see a chronological narrative unfold regarding women and empowerment through the availability of assisted reproductive technologies, according to these narratives sex and gender roles may not have changed as much as we assume they have especially as related to the conflict between women’s work and family roles. Instead, a spatial narrative emerges where women’s bodies still remain the site where social inequalities are said to be founded. There are conflicting reports in the narratives regarding the usefulness of reproductive technologies in creating a more equal playing field for men and women at work and at home. There is a main theme wherein reproductive technologies, from pharmacological birth control to assisted
221 reproductive technologies, provide women with control over their reproduction and, hence, over their lives. There is a subtheme, found in the law review narrative, which pushes back against this notion. This plot in this subtheme is that the special accommodations for women in the workplace along with increased reproductive technological advances in countering infertility, may actually act to reify the “motherhood mandate,” potentially creating fewer acceptable social and cultural options for women in the future. Regardless and whether related implicitly or explicitly, sex and gender discrimination play a large role in this story. 6.3. Contributions to the Literature 6.3.1. Methodological Contributions I see two main contributions that I make to the field methodologically through this project. The first is the use of multiple sets of data that span units of analysis. The second is to narrative analysis itself including the types of data that I employ as narratives and the use of narrative paradigms, including metanarrative, through which to understand and explain the findings. There are several import features of using multiple data sets. For this project in particular, the use of data sets that span units of analysis is used as a technique that allows us, as researchers, to expand our sightlines in order to envision the process of the social construction of events—here, the social construction of infertility as a disability (Farmer, Robinson, Elliott & Eyles 2006). At the individual level, one-on-one, semi-structured interviews provide insight into how women construct their own experiences of infertility and how these experiences shape their everyday lives. At the group level, the advocacy and support group data shows how the voices of such women are gathered, validated and
222 employed to provide: a synthesized view of what it means to be infertile, physically and psychologically; a source for support and education, and; grounds for social, medical and legal change. Finally, at the institutional level, here the law review articles, we see how everyday experience and calls for social change are evaluated within the legal system. I do not believe that any other studies in the area of infertility utilize this method nor do they address the social construction of infertility from this vantage point. An important benefit of using this method is that it provides the material required to construct a metanarrative. For this purpose of this study, a metanarrative is the overarching story that is organized and constructed from an underlying group of narratives into a coherent whole (Bruner & Kalmar 1998). My understanding of this definition is based on the notion that metanarratives are “narratives that go beyond the basic elements of narrative inquiry” through the researchers interpretation and “integration of historical, sociological, psychological cultural and contextual perspectives” (Irving 2004:30). The narratives in this study involve all of these perspectives and together they provide more than a vantage point from which to observe the process of constructing a social phenomenon. The meshing of the significant plot lines into a metanarrative provides a more comprehensive understanding of the obstacles that women face in many areas of reproduction and reproductive care—in obtaining access to treatments and the necessary time to pursue those treatments. It also brings to light the complex nature of this issue, its connection to lingering social inequalities via sex and gender, and the contradictions that emerge from attempting to address both. A tool that I found useful in examining the narratives was that of narrative paradigms, as discussed in Chapter 1. All four types of paradigms discussed in that
223 chapter, chronological, plot, spatial and thematic, proved useful in completing this analysis. Different stories emerge from narratives, as with other data, dependent upon the type of frame we use to examine them. Employing these frames allowed me to interact with the each data set and its unique attributes individually and as a group. They provided cohesiveness to my analysis that I might not otherwise have had. And, in looking at the data from different vantage points, different stories were allowed to emerge and potential new research questions came to the fore. For example, in employing the spatial paradigm, I was able to consider how stigma was located in each of the texts. In the individual narratives stigma is shaped by the desire for motherhood and the effects of treatment. The group narratives speak to these aspects of stigma but also provide grounds for mitigating stigma through group support and advocating for accommodations. Viewing the law review narratives from this vantage point, situated as they are in a locale where conflict is innate, allowed the stigmatizing nature of women’s reproductive bodies themselves to surface as a point of social contention. Together, these narratives help us to understand how infertility is stigmatizing and why that might be. I employed each of these paradigms in order to conduct this analysis and, again, I feel that this is a unique contribution to the social scientific literature regarding narratives. In my mind, it is also an important component in constructing a metanarrative. 6.3.2. Substantive Contributions I also see several contributions that I make through this work to the literature on infertility and how it is experienced. Pain and suffering are discussed as part of the broader notion of psychological distress in many of the primary works on infertility
224 (examples cited in this study, for example, are Greil 1991, 1997; and McQuillan et al. 2003). And studies that measure levels of grief and depression are also prevelant (for example, see Whiteford and Gonzalez 1995, Luske and Vacc 1999 and Oddens, den Tonkelaar and Nieuwenhuyse 1999). However, in my study I make the connection between the pain and suffering felt by women with infertility with the theoretical concept of chronic grief. Chronic grief is discussed in a variety of settings most often having to do with a child’s disability or the suffering experienced because of another’s disabling condition, for example, a spouse who is enduring cancer treatment. In this setting, though, chronic grief is experienced due to a loss to the self as exhibited through one’s own condition and to the loss of a potential experience—that of motherhood. Through this dissertation I have also shown that personal narratives link women’s lived experience with the law. By linking the data into a metanarrative, as described in the previous section, I have demonstrated that individual women’s experiences of infertility directly and indirectly affect how case law is decided and legislation is crafted. Directly, in that individual women who have similar experiences bring these law suits and indirectly as they help to construct the narratives of groups that advocate through their members and through the media. This is a unique contribution to the sociological literature on infertility which, in general, considers infertility mainly from the individual perspective. And, in so doing, I have also demonstrated that at least in some ways infertility is a disability—not simply analogous to one as is cited in other studies. Further, the notion of the motherhood mandate is shown to be an issue that retains its significance for women in the U.S., personally, socially and culturally. A number of sociological studies on women’s experience of infertility have suggested such a link, for
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example, McQuillan et al. (2003:1008) discuss motherhood as a “master status” for women, and Kitzinger & Willmott (2002:358) talk about the belief that motherhood is the “epitome of feminine fulfillment.” However, few studies have explicitly related the notion that there is an explicit connection between infertility, the motherhood mandate, and institutional sex and gender discrimination along a continuum of data as seen here. These findings also serves to remind us that legal rulings and legislation may not provide significant or immediate relief for conditions—social and cultural change occurs at a slower pace than technological ones. There is evidence for this phenomenon in the literature as it relates to other types of biotechnology, for example stem cell research and in vitro fertilization, and reproductive issues, such as contraception and abortion, but none that I could find regarding infertility and its management via the law. 6.3.3 Theoretical Contributions There are multiple ways in which I make a contribution to the theories of stigma and stigmatized identities through this project. As put forth in Chapter 1, when it comes to women’s reproductive bodies, I challenge the notion that there is an either/or relationship between discrediting and discreditable identities as some theoreticians have done using Goffman’s work (1986[1963]). In this project, the concept of an embodied identity along with an infertile identity, an identity that collides with the motherhood mandate, provides evidence that these two types of identities/statuses are not necessarily discrete. This finding also makes a contribution to the work on embodied identity in sociology of the body. Evidence is also provided in my work for stigma management strategies from managing information to constructing new understandings.
226 In my project, I challenge the distinction between discrediting and discreditable stigma (Goffman [1963]1986). The metanarrative reveals that childlessness is discrediting for women and that infertility is discreditable. Women, whether they have disclosed or concealed the reason for their childlessness, are subject to open person treatment (Cahill & Eggleston 1995). If they do disclose their condition they are subject to further scrutiny due to is discreditable nature and open person treatment may turn to nonperson treatment. And, in the case of infertility, both of these identities are inherently tied to women’s bodies and, therefore, to the notion of embodied identity. This study provides an examination of how the body is vital in considering both types of stigma as well as how it ties them together through the notion of failed motherhood. A major way in which my research contributes to theory on stigma is through providing empirical evidence for various stigma management strategies. In Chapter 1, I lay out four categories of stigma management: managing information, managing proximity, managing the future, and new understandings. Schneider and Conrad ([1980]1992) discuss three types of information management in their work on their stigma and chronic conditions. They are selective concealment, preventive disclosure and therapeutic disclosure. They are each purported to have separate uses and to be employed with different types of individuals and groups. What I found most interesting in analyzing the narrative data was that concealment and disclosure appear to be employed for a sole purpose: to avoid further stigmatization through open-person treatment. The concept of open-person treatment is one that Cahill and Eggleston (1995) talk about in their work with wheelchair users. I believe that explicitly linking these two concepts furthers the understanding of how and why disclosure and concealment are
227 employed. Cahill and Eggleston’s (1995) work is also vital when considering managing proximity. Avoiding open person treatment appears tantamount in the narratives. Isolation, mainly represented as physical separation, is suggested as another tactic for staving off such treatment. Here, we can link Cahill and Eggleston’s theories with those of Green, Davis, Karshmer, Marsh & Straight (2005) who discuss isolation not only as a self-protective measure but also as a means to actively resist the consequences of negative interactions. Linking these two perspectives again helps us to further our vision of stigma management: linking action of stigma management to its intent and its consequences through empirical examples. Managing the future is also an important stigma management technique that emerges throughout the data. The women who provided narratives for this study all had or were employing assisted reproductive technologies in an attempt to have a biological child. In so doing, they are attempting to manage their own futures, to put their life course back on track (McQuillan et al. 2003) in order to fulfill their own, or others, normative notions about what it means to be woman (Greil 2002). The other sources of narrative also reveal this tendency and to emphasize that there are other ways in which we can manage this future—through providing better access to care and resources for those with this condition. All of the narratives engage in advocacy and education work, an important notion within Schneider & Conrad’s ([1980]1992) category of therapeutic disclosure. Connecting life course theories to stigma management, here specifically managing the future, provides another way to view the process of management. Selflabeling theory (Matza 1969; Thoits 1995 & 2005), as suggested in my explanation of the last category of stigma management in Chapter 1, is an important component of
228 constructing new understandings. Self-labeling in these narratives is inherently tied to medicalization (Moser 2005) and boundary repair work (Bloomfield & Vurdubakis 1995). As Moser (2005) suggests in her work on disability, in these narratives we see that an effort to normatize the condition of infertility through medicalization as a key ingredient in achieving a new understanding about what infertility is and how big an affect it has on our society. Self-labeling involves boundary repair work which we see occur in these narratives through advocacy work, education, employment of medical technology and use of the legal system. Linking these two notions along with empirical evidence about what kinds of labor are involved in the process of self-labeling and boundary repair work allows us to see how new understandings about a condition like infertility evolve. 6.4. Future Research As I complete this research project I am aware that a number of the questions I raised require additional investigation. The ongoing difficulty in recruiting women of color for studies of infertility persists as does recruiting women of lower socioeconomic classes. Without a more diverse sample or access to data regarding its import for women across all racial and ethnic groups is also remains understudied—although efforts are being made to forge this gap (see Bell 2010 and Greil, McQuillan, Shreffler, Johnson and Slauson-Bleving 2010). Further, the persistence of the motherhood mandate in our culture also emerged throughout this analysis. However, how it is understood and experienced by across racial, ethnic and socioeconomic lines is another area of research that requires attention. An interesting offshoot of this line of questioning regards the conflicting narratives found in the law review data. While conflicting narratives in and of
229 themselves are not surprising as this is how we, lawyers, judges, courts and legislators, construct the law, what is surprising in the data are the conflicting beliefs about the impact that assisted reproductive technologies have on women’s equality in our society. One set of scholars claims that the more reproductive options that women have, and the more they are supported by the law, the more equality women will experience in society. Another set of scholars claims that the technology itself serves to reify the motherhood mandate, particularly that of biological motherhood, and undermines women’s personal choices and opportunities for equality. Another area for future study regards the impact of the Supreme Court’s ruling in Bragdon v. Abbott. The data for this project illuminates how the process of moving from an individual case of infertility may impact definitions found in federal acts. However, what is not clear from this, or other, studies or reviews is why this ruling has not changed the way that those with infertility obtain access to accommodations for treatment. In my study, I attempted to overcome a continued difficulty in the study of infertility: that of involving women of color in the research. Despite my efforts, I was unable to obtain a diverse respondent sample. Other contemporary researchers have achieved a higher level of success in obtaining diverse respondent samples through the use of web-based, mail, national random sample telephone surveys (Loftus 2004; Jain 2006; Greil, et al. 2010). Bell (2010) had success in reaching women of lower socioeconomic status for her study by placing postings at local grocery stores, public libraries and through Craigs list. One of the problems in achieving a diverse respondent set with current studies of women who experience infertility is that many are based on samples obtained through
230 fertility clinics. This creates a bias within the sample as demographic statistics show that women of color have lower incomes and less insurance coverage than do white women. They are also less likely to receive treatment for their fertility problems especially treatment from reproductive endocrinologists for sociocultural reasons (Taurin 2005; Becker, Castrillo, Jackson & Nactigall 2006; Bitler & Schmidt 2006). Therefore, many studies, including my own, tend to be overpopulated by white, middle and upper-middle class respondents. I attempted to address the limitation in sampling when designing my dissertation research by trying to find women who belong to advocacy/support groups whose point of contact was the internet. Success in reaching a wider range of respondents through employing this strategy is evidenced in the literature (Smith & Leigh 1997; Wallace 1999; Hamilton & Bowers 2006). However, the sampling outcome in my study has been similar to the results found in studies that obtained respondents through doctor’s offices. An item for consideration here, then, is why women of color have not been recruited? Are they less likely to seek medical care (see Jain 2005 and Becker et al 2006)? Belong to support groups? Are their structural obstacles (see Culley, Hudson & Rooij 2009)? Cultural ones (see Molock 1999)? Due to the continued problem of recruiting respondents of color for studies regarding these questions, as well as about their experience of infertility, I suggest that additional research should be conducted that addresses two topics of interest: 1) expectations for motherhood for women of color, and; 2) women of color’s experiences with infertility. As other researchers have mainly employed surveys in order to reach a more diverse respondent pool, I suggest a different tack-- participatory design. In a participatory design, key stakeholders in the field, here women of color who have
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infertility, are asked for their input on how and where to find respondents as well as how to construct interviews and focus groups with respondents, who should interview respondents, and where interviews should be conducted. Each racial or ethnic group may have differential expectations when it comes to motherhood role expectations, attitudes towards those who don’t have children, whether they differ based on their voluntarily or involuntarily childless status, their experiences of infertility, both personally and socially, as well as their attitudes towards medical assistance for their fertility problems and their access to medical care for fertility assistance. These questions can be addressed in situ, and compared across groups, if all parties work cohesively throughout the design, collection and analysis process. Such a study, if conducted carefully and thoroughly, could provide dynamic new insights into both the experience of infertility across domestic cultures as well as inform us about how traditions of motherhood may vary. This may reveal racial and ethnic similarities and differences in what researchers and legal scholars alike refer to as the “motherhood mandate”—a term originally employed by Russo (1976) and followed up on by Kitzenger & Wilmott (2002). This will be a useful contribution to the field in that it may shed light on how and why women construct their lives in response to the feminine social and cultural role expectations of ‘mother.’ Further, it may also lead to an examination of the import of women’s reproductive role in U.S. society and how the interaction of individual and social expectations works to maintain gendered inequalities into the 21st century. Work by Joan Acker (1990) on the gendered nature of organizations, Elizabeth Roush (2009) on work-life balance as well as Arlie Russell Hochschild (2003; 1997; 1989) on emotion work and work-life balance will
232 inform this project. Michel Foucault’s theories of biopower (1990), which refers to the state regulation of the population, and docile bodies (1995), the effects of such power on bodies, (1995) may also prove useful in considering how the motherhood mandate may constrain women’s equality at work and at home. 14 Further, bell hook’s work on power (1990), including her notions of sites of deprivation and spaces of resistance, may be useful in seeking a way to explain the differing views on whether or not assistive reproductive technologies are, then, empowering or not for women. Finally, I believe an examination of the historical and sociological implications of the impact of the Supreme Court’s ruling in Bragdon v. Abbott is called for. The findings from my project illuminate how the process of moving from an individual case of infertility may impact definitions found in federal acts. However, what is not clear from this or other studies or reviews is why this ruling has not changed the way that those with infertility obtain access to accommodations for treatment. We know that a culture lag exists between the implementation of technology and social acceptance of it and we also know that same lag exists between the implementation of regulations that seek to level the playing field when it comes to social inequalities. However, it is not clear how, or if, this ruling has had any effect on how women with infertility understand their condition, experience stigma, seek support or access resources. A study of this nature would be of interest to all the narrative contributors to the present study as well as a major contribution to the literature concerning the social construction of stigmatizing conditions.
14
Concepts as interpreted by Deveaux (1994).
233
The foundation of these suggested lines of research portrays my interest in the import of women’s reproduction to the social order in conjunction with its affects on contemporary women’s roles, status and lived experience in U.S. society. The research results that I present in this study reveal that women’s claims for their desire for children remains deeply rooted in their early socialization. These narratives also suggest that the “motherhood mandate” is an observable characteristic of our social system. However, within that system unequal rewards appear to be proffered to women regardless if they fulfill this mandate or not. At the conclusion of Chapter 5, I note that the findings affirm that infertility is socially constructed as a disability in these narratives. Further, I state that in naming this project, I felt that the phrase ‘unruly bodies’ was an apt one when considering the wayward appearance of bodies that do not let women fulfill their personal desires and social responsibilities as mothers. However, after conducting this analysis I feel that the narratives indicate more--that women inhabit unruly bodies regardless of their motherhood status. In these stories, it appears that our bodies are unwieldy if they are able to produce children or not able to produce children; either way they do not let us conform to ideal worker expectations, and assertions are made that extra considerations for women and their reproducing bodies will create a higher level of equality for women while others claim that extra considerations, such as assisted reproductive technologies, only reify women’s unequal position in society compared to men.
234 In pursuing such a research agenda, I hope we keep these issues in the forefront of the our sociological imaginations—where we can examine the personal troubles that women endure, particularly in relation to our reproductive bodies, and present them as a case for constructing these troubles as public issues deserving of consideration and transformation.
REFERENCES
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APPENDICES
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Appendix A. Outreach Letter
Elizabeth A. Sternke, Ph.C. Dept. of Sociology and Anthropology Purdue University 700 W. State Street West Lafayette, IN 47906 June 1, 2007 Ms. Jane Doe, Chapter Director Local Infertility Support Group 333 Main Street Anywhere, USA 55555 Dear Ms. Doe, We are currently conducting research about reproduction and fertility and are interested in talking with women who have struggled to become pregnant or maintain a successful pregnancy. The purpose of this study is to find out how women experience their struggle with getting pregnant or in successfully maintaining a pregnancy. Participants will be asked to complete a written questionnaire as well as take part in a one to two hour interview in your area at a place mutually agreed on between the participant and the researcher. All information that is shared in both settings will be strictly confidential and conforms to a very stringent set of rules and regulations designed to protect those who participate in this research. It is our hope that you and your organization will assist us with finding study participants by announcing the information about the study at local and regional meetings. In addition, we would like to supply flyers to post at your sites and to hand out to interested women in your area. Further, we would like your permission to allow us to post a message advertising the study on your website or list-serve. If you or your organization are amenable to participating in this important research process, or would like more information, please contact me at (765)464-1084 and leave a message. Also, please feel free to send a message via e-mail to me
[email protected]. Thank you very much for your time and consideration. Sincerely, Elizabeth A. Sternke, Ph.D. Candidate Purdue University IRB Research Protocol No.: 0705005324
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Appendix B. Recruitment Flyer RESEARCH PARTICIPANTS SOUGHT Are you a woman who has struggled to become pregnant? If so, you are invited to participate in a research study about women’s experiences with fertility issues. The purpose of this study is to investigate how women experience their struggle with getting pregnant or in successfully maintaining a pregnancy. Participants will be asked to complete a written questionnaire as well as take part in an important one to two hour interview. All information that you share will be strictly confidential. If you are interested in participating or would like more information, please contact: Elizabeth A. Sternke at (765)464-1084 and leave a message OR send an e-mail to
[email protected]. Purdue University (765)494-4668 Dept. of Sociology and Anthropology 700 W. State Street West Lafayette, IN 47907 Research Contact Information
Research Contact Information
Research Contact Information
Research Contact Information
Research Contact Information
Research Contact Information
Research Contact Information
E. Sternke (765)464-1084
E. Sternke (765)464-1084
E. Sternke (765)464-1084
E. Sternke (765)464-1084
E. Sternke (765)464-1084
E. Sternke (765)464-1084
E. Sternke (765)464-1084
sternke@ purdue.edu
sternke@ purdue.edu
sternke@ purdue.edu
sternke@ purdue.edu
sternke@ purdue.edu
sternke@ purdue.edu
sternke@ purdue.edu
248 Appendix C. Web Posting Are you a woman who has struggled to become pregnant? If so, you are invited to participate in a research study about women’s experiences with infertility. Participants will be asked to complete a written questionnaire as well as take part in an important one to two hour interview. All information that you share will be strictly confidential. If you are interested in participating or would like more information, please contact Elizabeth A. Sternke e-mail at
[email protected] Or via phone at (765)464-1084 Purdue University, Dept. of Sociology and Anthropology (765)494-4668 700 W. State Street West Lafayette, IN 47907 Purdue University IRB Research Protocol No.: 0705005324
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Appendix D. Questionnaire Letter DEPARTMENT LETTERHEAD Elizabeth A. Sternke, Ph.C. Dept. of Sociology and Anthropology Purdue University 700 W. State Street West Lafayette, IN 47906 June 1, 2007 Ms. Jane Doe 333 Main Street Anywhere, USA 55555 Dear Ms. Doe, Thank you for agreeing to participate in our research project. This project is part of ongoing research in the area of reproduction and fertility. By sharing your important story about your struggles with fertility you may help to further both academic and laypeople’s understanding of this experience. This project has been approved by Purdue University’s Internal Review Board which means that it conforms to a very stringent set of rules and regulations designed to protect those who participate in this research. You and your identity will remain strictly confidential during all phases of the research as well as in publication. With this in mind, it’s important that you respond to each question on this preliminary survey and, when completed, promptly mail the survey form back in the enclosed selfaddressed, stamped envelope. Once again, thank you very much for your time in completing the survey. I look forward to meeting you in person on [insert: day, date, time and place]. Sincerely, Elizabeth A. Sternke, Ph.C. encl: survey questionnaire PR12345 [participant research number] Purdue University IRB Research Protocol No.: 0705005324
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Appendix E. Mail Survey The first set of questions are about you and your background. Please provide a checked or written response as is indicated with each question. 1) In what year were you born? _________ 2) How many years of education do you have o Less than 12th grade o Through 12th grade, did not graduate from High School o Graduated from High School or received GED o Technical or vocational training o Some college, no degree o Associates (2-year) degree o Bachelors (4-year) degree o Graduate or Professional degree o Don’t know o Do not wish to answer 3) Which of the following best describes your current marital status: o Single, never married o Cohabitating with a partner but not married o Married o Separated o Divorced o Widowed o Other:___________________________________ o Don’t know o Do not wish to answer 4a) If you have a partner or spouse, are you currently living in the same household? o Yes o No o Do not wish to answer 4b) How many other people are currently living in your household? o0 o1 o2 o3 o4 o5 o 6 or more o Don’t know
251 o Don’t wish to answer 5) I regard my racial or ethnic background as mainly: o American Indian or Alaskan Native o Asian or Asian American o Black or African American o Hispanic or Latino o Native Hawaiian or other Pacific Islander o White/Caucasian o Bi-racial:__________________________________________ o Multi-racial:________________________________________ o Other: ____________________________________________ o Don’t know o Do not wish to answer 6) I currently consider myself to be associated with the following religion: o Agnostic o Atheist or no religious beliefs o Buddhist o Catholic o Hindu o Jewish o Muslim o Native American o Orthodox Christian o Protestant or Nondenominational Christian (If you mark this item, please indicate your specific organizational affiliation:__________________________________ o Unitarian Universalist o Other:______________________________ o Don’t know o Do not with to answer 7) What is your current work status? o Employed full-time o Employed part-time o Full-time Homemaker o Full-time Student o Not employed for pay/Volunteer o Retired o Unemployed/Able to work o Unemployed/Unable to work o Other:_________________________________________ o Don’t know o Do not wish to answer
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7a) If you are employed as a paid worker, what type of work do you perform? o Construction or Maintenance o Education o Farming, fishing or forestry o Fine Arts o Healthcare o Management or Professional o Media/Jouranlism o Personal care o Protective services (such as fire fighting or law enforcement) o Restaurant or Food Preparation o Sales o Transportation or Material Moving o Other:__________________________________________ o Not applicable: see previous response o Don’t know o Do not wish to answer 7b) Whether or not you are compensated for your work, during the average week, how many hours do you work, counting overtime, travel to and from work, and work done for the job at home? o0 o 1-10 o 11-20 o 21-30 o 31-40 o 41-50 o 51-60 o 60 or more o Do not wish to answer 8) What was Your Personal income from all sources before taxes for last year? (Business owners and other self-employed workers, please indicate your net income after expenses): o Less than $10,000 o $10,000 to $19,999 o $20,000 to $39,999 o $40,000 to $49,999 o $50,000 to $59,999 o $60,000 to $69,999 o $70,000 to $79,999 o $80,000 to $89,999 o $90,000 to $99,999 o $100,000 or more
253 o Other:___________________________________ o Don’t know o Do not wish to answer 8a) What was the Total Household income from all sources, including partner’s income, alimony or child support payments received, Disability, Social Security, or any Government welfare payments, rental incomes, etc., before taxes for last year? (Business owners and other self-employed workers, please indicate your net income after expenses): o Less than $10,000 o $10,000 to $19,999 o $20,000 to $39,999 o $40,000 to $49,999 o $50,000 to $59,999 o $60,000 to $69,999 o $70,000 to $79,999 o $80,000 to $89,999 o $90,000 to $99,999 o $100,000 or more o Other:___________________________________ o Don’t know o Do not wish to answer 8b) Are you currently covered by health insurance or some other kind of health care plan? o Yes, through employer o Yes, through partner or spouse’s employer o Yes, I purchase an independent healthcare insurance plan o Yes, through a government program o No, I do not currently have a health insurance plan o Don’t know o Do not wish to answer The following are questions about pregnancy and childbearing. This set of questions will help me to know you and your situation better before we meet in person for our interview. 9) Have you ever been pregnant? o Yes o No o Unsure o Do not wish to answer 9a) If you have been pregnant in the past, how many times have you been pregnant? ____________
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9b) Are you currently pregnant? o Yes o No o Unsure 10) Have you ever borne any children? o Yes o No o Do not wish to answer 10a) Counting step, adopted and biological children, how many children do you have? _________ 10b) Of these children, how many are your biological children? _________ 11) Was there ever a time in your life when you were trying to get pregnant but did not conceive as quickly as you expected? o Yes o No o Unsure o Do not wish to answer 11a) If so, did this last for at least 6 months? o Yes o No o Don’t know o Do not wish to answer 11b) If this has happened more than once, how many times altogether has this occurred? _________ 12) Some women are able to get pregnant, but have difficulty carrying a baby to full-term. As far as you know, is this, or has this been, a problem for you? o Yes o No o Don’t know o Do not wish to answer 12a) Have you ever had surgery that makes if difficult or impossible for you to have [a/another] baby? o Yes o No o Don’t know o Do not wish to answer
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If yes, please specify the type of surgery that you received and why: ________________________________________________________________________ ________________________________________________________________________ ______________________________________________________ 12b) Has [your partner or spouse] ever had a vasectomy or any other operation that would make it difficult or impossible for him to father a baby in the future? o Yes o No o Do not wish to answer If yes, please specify the type of surgery that you received and why: ________________________________________________________________________ ________________________________________________________________________ ________________________________________________________________________ ____________________________________________________ 12c) Before you tried to get pregnant, did you have any reason to think you might have trouble getting pregnant (medical or otherwise)? o Yes o No o Do not wish to answer 12d) If yes, what raised your concerns? ________________________________________________________________________ ________________________________________________________________________ ________________________________________________________________________ ________________________________________________________________________ _______________________________________________ 12e) During any of your relationships, have you or your partner at the time ever been to a doctor or a clinic to talk about ways to help you become pregnant? o Yes o No o Do not wish to answer 12f) Did you or your partner get medical tests to determine the nature of the problem? o Yes o No o Do not wish to answer
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12g) Have you ever undergone medical treatments for your fertility concerns? o Yes o No o Do not wish to answer I’m interested in approaches people may have taken to educate themselves about fertility problems. In the process of dealing with your fertility, please tell me if you have ever done the following: 13) Read articles on fertility in popular magazines (for example, Time, Newsweek, Women’s Day, Redbook, etc.)? o Yes o No o Do not wish to answer 13a) Read articles on fertility in technical or scientific journals (for example, Journal of Reproduction and Fertility Fertility and Sterility Journal of Assisted Reproduction and Genetics)? o Yes o No o Do not wish to answer 13b) Read a book about fertility? o Yes o No o Do not wish to answer 13c) Asked a healer or alternative medicine practitioner about fertility (for example, massage, acupuncture, herbal or dietary therapy)? o Yes o No o Do not wish to answer 13d) Consulted a minister or other spiritual leader about fertility? o Yes o No o Do not wish to answer 13e) Consulted a therapist, medical or not, or any other mental health professional about fertility? o Yes o No o Do not wish to answer
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13f) Discussed fertility issues with friends or family? o Yes o No o Do not wish to answer 13g) Discussed fertility with others who have experienced similar problems? o Yes o No o Do not wish to answer 13h) Contacted a support group or reproductive health organization for information about fertility? o Yes o No o Do not wish to answer 13h) Participated in a fertility support group or reproductive health organization? o Yes o No o Do not wish to answer 13i)Looked for information about fertility on the Internet? o Yes o No o Do not wish to answer Is there anything else that you would like me to know about you before we meet? If so, please feel free to note your comments below or on another sheet of paper. THANK YOU very much for taking the time to answer these preliminary questions. I look forward to meeting with you in person. Sincerely, Elizabeth A. Sternke Dept. of Sociology and Anthropology Purdue University 700 W. State Street West Lafayette, IN 47907 (765)494-4668
[email protected]. Purdue University IRB Research Protocol No.: 0705005324
258 Appendix F. Interview Schedule 1) Tell me about the first time you realized that you were having problems getting pregnant or maintaining a pregnancy… Follow-up questions: 1a) What did you decide to do about it? 1b) How did you make that decision? 2) Do you have a physician’s diagnosis for infertility? If yes: 2a) Would you share with me the details of that diagnosis? 2b) What did you think about what the doctor had to say? And, how did this make you feel? 2c) Has your doctor indicated to you why you might have developed your infertility? Follow-up: Do you have any theories of your own? 2d) Are you currently undergoing any type of fertility treatment? 2e) If so, what does it entail? 2f) Are there other types of treatments that you have tried? 2g) If not, tell me why not… 3) Do you think that these experiences have had an impact on your life? If so, how? 3a) What kinds of changes have you experienced in your day-to-day life? 3b) Do you think that these changes have affected your sense of control over your life? If so, in what kinds of ways? 3c) Have your experiences affected major life decisions (such as moving, changing jobs, etc.)? 3d) Do you think they have affected your world view on religious, political or social issues? 3e) Do you feel differently about your body now versus before? If so, how? 3 f) Do you think that your experience with infertility affected your sex life? Follow-up: Has it changed the way you think of yourself as a sexual person? 4) Do you feel that your relationship with your partner changed since you found out that you had fertility problems? 4a) Do you feel that relationships with friends changed since you found out you were infertile? 4b) What about family relationships?
259 5) Would you please describe what it is like to be infertile to someone who has not experienced it? 6) Who have you told about your difficulties in getting pregnant or maintaining a successful pregnancy? Why? 6a) Who have you not told? Why? 7) Would you please share with me any particular times or situations that have made you, as someone who has had difficulty getting pregnant or maintaining a pregnancy, uncomfortable? 7a) Are there any particular questions or comments that people have asked or made about your infertility that have annoyed or upset you? Could you give me some examples? Follow-up: Why do you think that these situations, questions or comments upsetting to you? How did they make you feel? 8) Are there special ways that you cope with childbearing difficulties or their treatment? 8a) Do you feel like you have the social support you need? Why or why not? 8b) If yes, where does that support come from? 8c) What kind of support is the most important to you? 8d) Tell me about your involvement with [RESOLVE or NINE] 8e) In what ways has your involvement with [RESOLVE or NINE] been the most helpful? 9) Tell me, what has been the most difficult thing about infertility for you so far? 10) You indicated on you questionnaire that you do (11a, b, c and f)/do not (11 d, e, and f) have a health insurance plan. 10a) If you have a plan, what type of coverage does it offer for fertility tests and treatments? 10b) Does your plan provide any coverage for time missed from work in order to go to the doctor or receive your treatments? 10c) What arrangements have you made to pay for co-pays and/or charges that are not covered by your policy? 10d) Since you do not have a health insurance plan, how do you pay for doctor’s visits, and fertility testing and treatments? 10e) Does time away from work for doctor’s visits and treatments financially affect your ability to receive further treatments? 10 f) Have you and your partner set any limits on the amount of time and money you will be able to invest in a fertility plan? If so, please describe those limits.
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11) There is a legal movement underway to have infertility labeled as a disability under the American with Disabilities Act of 1990. As you may know, two of the main reasons for this movement is it is hoped that it will help women gain insurance coverage for treatments as well as mandating that employers allow women the time off from work necessary to attend doctor’s appointments and receive treatments. 11a) How do you feel about this idea? 11b) Do you think that taking on the label of disability would alter your feelings about yourself in different ways from calling yourself infertile or experience fertility problems? If so, how? Why do you think that is? 12) Tell me what you think your life will be like will you do if you can’t get pregnant or maintain a successful pregnancy? 13) Is there anything that we haven’t talked about yet that you would like to concerning your experience with infertility?
Fieldnotes:
261 Appendix G. Consent Form For IRB Office Use Only
RESEARCH PARTICIPANT CONSENT FORM INFERTILITY, DISABILITY AND SELF-LABELING J. William Spencer, Ph.D. Dept. of Sociology and Anthropology Purdue University 700 W. State Street West Lafayette, IN 47906 Purpose of Research This project is part of ongoing research in the area of reproduction and fertility by the investigators. For this particular project we are interested in talking with women who have struggled to get pregnant or maintain a pregnancy. We hope to use the information provided to us to help further the understanding of the experience of fertility problems from the viewpoint of the women themselves rather than through a solely traditional, medical viewpoint. Specific Procedures and Duration of Participation You will be asked to complete a mail questionnaire with an estimated time to investment of twenty minutes. You will also be asked to participate in an in-person interview which will take between one and two hours of your time. You as the participant may choose to ask the investigator to come to your home, to meet you in a public place, such as a coffee shop or library, or ask the investigator to arrange for a private meeting room in which to conduct the interview. Risks to the Individual The risks of participating in this study are minimal and are no more than you would encounter in everyday life. Benefits to the Individual or Others This study does not offer a direct benefit to individuals. It may, however, help further both academic and laypeople’s understanding of this experience. Extra Costs to Participate There is no monetary cost to the participants of this study.
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Confidentiality The questionnaire will be kept in a locked file drawer on campus for one full year. This will allow time for the information to be entered into a data analysis program and be analyzed without risk of being unable to retrieve necessary data if computer problems arise. These entries will be confidential as they will be labeled with a participant research number and no names will be recorded during the data entry. After this time the documents will be shredded and discarded. Interview recordings will be kept until they are transcribed and accuracy of the transcriptions are assured—a period of no longer than six months. Again, the transcribed interviews will not identify participants by name but only by research participant number. All computerized files will require personalized password access which will be only be available to the investigators of this study. The data collected for this project will be used for future scholarly publication and will be kept indefinitely. Pseudonyms will be used instead of research participant numbers in any published material. The project’s research records may be inspected by the Purdue University Institutional Review Board or its designees to ensure participant’s rights are being protected. Voluntary Nature of Participation I understand that I do not have to participate in this research project. If I agree to participate I can withdraw my participation at any time without penalty. Contact the investigators immediately if you wish at the contact numbers listed below if you wish to withdraw your consent to participate in this project. The researchers would like your permission, to contact you again after the first interview. Please indicate below by initialing and dating whether or not you are open to being contacted again in the future. Again, I understand that I may change my response and withdraw my participation at any time without penalty. _____ I give permission to be contacted in the future for clarification regarding my responses to the mail survey and interview questions. _____ I do not give permission to be contacted in the future for clarification regarding my responses to the mail survey and interview questions. Contact Information: If I have any questions about this research project, I can contact: 1) Elizabeth A. Sternke at (765)464-1084 or
[email protected]; or 2) Jack Spencer at (765)494-4677 or
[email protected]. If I have concerns about the treatment of research participants, I can contact the Institutional Review Board (IRB) at Purdue University, 610 Purdue
263 Mall, Hovde Hall Room 300, West Lafayette, IN 47907-2040. The IRB’s phone number is (765) 494-5942. The email address is
[email protected]. I HAVE HAD THE OPPORTUNITY TO READ THIS CONSENT FORM, ASK QUESTIONS ABOUT THE RESEARCH PROJECT AND AM PREPARED TO PARTICIPATE IN THIS PROJECT. ____________________________________________ Participant’s Signature ____________________________________________ Participant’s Name ____________________________________________ Researcher’s Signature
________________________ Date
_________________________ Date
VITA
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VITA ELIZABETH A. STERNKE Curriculum Vitae Department of Sociology 1132 Anthrop Drive 700 W. State Street West Lafayette, IN 47906 Purdue University (765) 464-1084 West Lafayette, Indiana 47907
[email protected] EMPLOYMENT July 2010 to present Associated Health Patient Safety Fellow, Center for Excellence on Implementing Evidenced Based Practice, Health Services Research & Development, Richard L. Roudebush VA Medical Center, Indianapolis, Indiana. EDUCATION 2010 2007 2005 2003 2000 2000
Ph.D. Sociology, Purdue University Ph.D. Certification in Women’s Studies, Purdue University M.S. Sociology, Purdue University M.S. Anthropology, Purdue University B.A. Sociology Honors, University of West Florida B.A. Cultural Anthropology, University of West Florida
PROFESSIONAL DEVELOPMENT 2010 Medical Team Training, National Center for Patient Safety 2010 Root Cause Analysis Training, National Center for Patient Safety 2010 Human Factors Engineering Training, National Center for Patient Safety 2007 Ph.D. Certification in Survey Research Methods, Purdue University 2006 Graduate Teacher Certification, Center for Instructional Excellence at Purdue University
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HONORS and AWARDS 2007 2007 2007
Research Fellowship, Purdue Research Foundation ($3,000) Research Incentive Grant, Purdue Research Foundation ($500) Beth B. Hess Memorial Scholarship, Sociologists for Women in Society (Honorable Mention)
RESEARCH and TEACHING INTERESTS Substantive areas: Medical Sociology, Social Psychology, Sex and Gender, Culture, Research Methods Specialty areas: Patient Safety, Patient Empowerment and Self-Management, Stigma, Chronic Conditions RESEARCH Current Projects Neale Chumbler, Principal Investigator, Health Information and Communication Strategies for Improving Stroke Care, CIEBP, Richard Roudebush VA Medical Center (current). Role: Co-investigator, qualitative methods specialist. Richard Frankel, Principal Investigator, Controlling Hypertension Outcomes through Intervention, Communication, & Engagement, CIEBP, Richard Roudebush VA Medical Center. Role: Co-investigator. Marianne Matthias, Principal Investigator, A Formative Evaluation of a Trial for OEF/OIF Veterans with Chronic Pain CIEBP, Richard Roudebush VA Medical Center. Role: Co-investigator. Elizabeth Sternke, Co-Investigator, Shared Decision Making and Its Impact on Safety for Patients with Chronic Pain, as part of the CIEBP Young Investigator Award, Marianne Matthias, Principal Investigator. CIEBP, Richard Roudebush VA Medical Center. Past Experience Shelly McDermott, Principal Investigator, Pathways to Success, Military Family Research Institute, PurdueUniversity (2009). Role: Research Assistant. Collected and
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analyzed observational and survey data and developed procedures for assessing program success. John Stahura, Professor of Sociology, Director of the Social Research Institute, Purdue University. Role: Research Assistant. Running focus groups, preparing and analyzing focus group data, participating in preparing final reports. Jeni Loftus, Professor of Sociology, Purdue University (2008). Role: Research Assistant. Preparing and analyzing data using STATA, integrated qualitative and quantitative data findings, and prepared report for presentation. PUBLICATIONS Under Review Andriot, Angie and Elizabeth A. Sternke “Guilty with an Explanation: The Case of the Modern Confession Narrative.” Revise and resubmit for Symbolic Interaction. Morgan, Kristopher H. and Elizabeth A. Sternke “The Stem Cell Divide: How Religious Beliefs, Political Views and Attitudes about Life Issues Inform Positions on Embryonic Stem Cell Research.” Under review at Review of Religious Research. Selected Works in Progress Coe, Deborah L. and Elizabeth A. Sternke “What’s the Job Got to Do with It? Relationships between Occupational Field and Religious Conservativism.” In preparation for submission to Journal for the Scientific Study of Religion. Loftus, Jeni M. and Elizabeth A. Sternke “The Effects of Social Class on Depression and Anxiety for Women with Infertility.” In preparation for submission to Journal of Health and Social Behavior. PRESENTATIONS 2010 Sternke, Elizabeth A. “Emphasizing the Importance of Health Theory and Research in an Introductory Sociology Course.” Presented at the meeting of the Midwest Sociological Society in Chicago, Illinois.
267 2009 Lawston, Jodie, Elizabeth Sternke and Tricia McTague. "Sex in the City: Sex Workers and the Unionization of their Labor." A co-sponsored session of the Sociologists for Women in Society and the Society for the Study of Social Problems presented at their meetings in San Francisco, California. 2009 Sternke, Elizabeth A. and Melissa Stacer. “Wake Up and Do It! Engaging Students' Sociological Imaginations.” Presented at the meeting of the Midwest Sociological Society in Des Moines, Iowa. 2008 Loftus, Jeni and Elizabeth A. Sternke “The Effects of Social Class on Depression and Anxiety for Women with Infertility.” Presented at the 2008 International Reproductive Challenges conference in Oslo, Norway. 2008 Sternke, Elizabeth A. "Other Mothers: Infertility and the Culture of Motherhood.” Presented at the meeting of the Society for the Study of Social Problems in Boston, Massachusetts. 2008 Sternke, Elizabeth A. and Kristopher H. Morgan. “Splitting Identities: Are Women Really More Liberal Regarding Embryonic Stem Cell Research than Men?” Paper presented at the Midwest Sociological Society meeting, St. Louis, Missouri. 2007 Morgan, Kristopher H. and Elizabeth A. Sternke. “Splitting Identities: A Structural Equation Model Analysis of Religion, Political Beliefs, Familiarity with Science and Biomedical Research.” Paper presented at the American Sociological Association meeting, New York, New York. 2007 Sternke, Elizabeth A. “Unruly Bodies: A Narrative Analysis of the Disabled Female Body and the Incapacity to Become Pregnant.” Paper presented at the Midwest Sociological Society meeting, Chicago, Illinois. 2006 Sternke, Elizabeth A. “Infertility and Perceptions of the Body.” Paper presented session at the Midwest Sociological Society meeting, Omaha, Nebraska. 2003 Sternke, Elizabeth A. “Persistence of Rape Myths in American Newspapers: An Analysis of Trends in Newspaper Coverage of Rape from 1968 to 1996.” Paper presented as part of the Social Problems Theory Panel, Society for the Study of Social Problems annual meeting.
268 TEACHING Purdue University 2009 2006-2010 2006-2009 2005-2007 2003
Racial & Ethnic Diversity Social Psychology of Marriage Introductory Sociology (traditional & online) Culture & Personality Human Cultural Diversity
Ivy Tech Community College 2004-2005
Introduction to Sociology
SERVICE 2009/2010 2009
2008/2009 2006-2007 2004 2002-2003
Member-At-Large, Social Action Committee, Sociologists for Women in Society Member of the Graduate School Selection Committee for the 2009/2010 Outstanding Graduate Faculty Mentor Award for Purdue University Vice-President, Purdue Sociology Graduate Organization Graduate Student Representative, Teaching Committee, Department of Sociology & Anthropology Departmental Senator, Purdue Graduate Student Government Member of the Women's Studies programs committee
PROFESSIONAL ORGANIZATION MEMBERSHIP American Sociological Association Human Factors and Ergonomics Society Semiotic Society of America Society for the Study of Social Problems Sociologists for Women in Society National Women’s Studies Association
