Jan 14, 2011 - appropriate for medical intervention. Amundson asks .... intersexed people desire to reverse surgeries performed in their infancy. In these cases ...
Disability, functional diversity, and trans/feminism Ben Almassi International Journal of Feminist Approaches to Bioethics, Volume 3, Number 2, Fall 2010, pp. 126-149 (Article) Published by Indiana University Press
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DISABILITY, FUNCTIONAL DIVERSITY, AND TRANS/FEMINISM Ben Almassi
Abstract
I propose that a feminist analysis of contemporary conversations on normalfunctioning and functional-diversity approaches to understanding disability can locate in some people’s resistances to disability an attitude compatible with respect for functional diversity. The history of feminist work in collaboration with transgender work offers an evocative model for an approach to disability that enables solidarity with those seeking functional alteration. This approach provides one way to understand how a critical analysis is compatible with respecting bodily functional desires, such that one may seek physical change while working for social change alongside those successfully functioning otherwise.
Introduction
F
eminist approaches to bioethics have the striking ability to usefully disrupt conversations otherwise in danger of calcifying into immovable opposing camps. Take, for instance, debates between theorists in disability studies and
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bioethicists who often take two different approaches to understanding disability. On one side are those such as Buchanan, Brock, Daniels, and Wikler (2000) who seek to locate the apparent functional deficiency of disability in biologically abnormal bodies. Let us call this a normal functioning approach to understanding disability. On the other side are those such as Amundson (2000a; 2005) who argue that to be paraplegic or deaf is not to be inherently deficient but different in functioning from those who are as yet able-bodied. Let’s call this a functionaldiversity approach to understanding disability. Those who take the latter approach urge us not to conflate typical functioning with successful functioning. They do not deny that it can be difficult to function successfully with a physical or cognitive disability, but instead urge us to recognize often overlooked causes of these difficulties. Specifically, they suggest that much of what makes it so challenging to live with an atypical body-type in the modern world are cultural norms, social policies, and physical infrastructure that have been built to work for those with more typical body-types. In the recent popular conversation on disability in the United States, this tension over understanding successful embodied functioning finds considerable purchase in the clash between Christopher Reeve (actor, director, and after his paralysis advocate for spinal cord regeneration research) and disability rights advocates who criticized his focus on cure—to the neglect of social problems—as crucially misplaced. Where Reeve would insist, “We were not born meant to be living in wheelchairs. We were meant to be walking upright with all of our body systems fully functional, and I’d like to have that back” (Cooper 1997), his critics would respond, “I feel sorry for him because he wants to be cured” (Martin 1997). As historian of disability Paul Longmore put it, Reeve “literally embodies even as he espouses a series of American myths [including] the refusal to see ‘disability’ as an issue of institutional prejudice and discrimination; the flight into cure as a way to evade confronting societal and personal prejudice” (Brown 1996, 1). I propose that a feminist analysis could be of great benefit to this dispute between Reeve and his critics and to the broader contemporary conversation on the biological and environmental dimensions of disability more generally. Such an analysis can uncover, in those like Reeve, an attitude toward alternate modes of functioning that is compatible, not in conflict, with a functional-diversity approach to disability. Specifically, I suggest that the recent histories of feminist theories, both those that are antagonistic toward and those that are in collaboration with transgender politics and studies, provide an evocative model for a critical engaged analysis of disability that also has space for solidarity with those like
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International Journal of FEMINIST approaches to Bioethics 3:2 Reeve who seek functional alteration. Taking to heart Wendell’s recognition that feminist theory “offers perspectives and categories of analysis that help to illuminate the personal and social realities of disability” (1989, 105), and GarlandThomson’s warning that “much of current disability studies does a great deal of wheel reinventing” (2002, 1) in neglecting the history of feminist theory and women’s studies, I urge that we might recognize in trans/feminism an encouraging blueprint for fruitful dialogue across functional and epistemic divides in understanding disability. Absent the sort of analysis spurred by the achievement of trans/feminist theory and politics, those sympathetic to Reeve’s observation that “[i]n my condition I would prefer to walk rather than not to walk. That’s where I’m coming from and if there are other people to whom that is not important then that’s their choice” (Cooper 1997) might otherwise presume that such sympathy requires taking a normal-functioning approach to disability. Particularly for many of us who are currently relatively able-bodied, Reeve’s desire may appear beyond reproach. Intellectually I may agree that the difficulty of living with an atypical mode of functioning is the result of discriminating policies and social structures rather than the physical condition itself. Yet when my attention turns to the prospect of life with a disability that I do not have, it is admittedly hard to shake my acute preference for my current mode of functioning and my persistent intuition that I would experience a significant loss not entirely reducible to social factors were I to acquire the disability in question. Such an intuition may seem to support the idea that disability must be an objective matter of biological abnormality that inherently limits one’s successful functioning. Is this intuition evidence against a functional-diversity approach, then, or instead evidence of remnant able-bodied prejudices? Here I argue that the blueprint of trans/feminism suggests a third possibility, one capable of making sense of such an intuition as expressing a defensible sentiment distinct from the belief that life with an impairment is objectively deficient. In this way, we may understand how those who agree with Reeve may strive to gain or regain particular modes of functioning without disrespecting, for example, those living with paralysis. Thus we see how one may critically engage presumptive analyses of disability as abnormal functioning while respecting desires regarding functional alteration.
Language, disability, and trans/feminism Before proceeding, let me make a few clarifying remarks about the language of disability, feminism, and trans issues. We may begin with the language of the
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Americans with Disabilities Act, which defines what it means for an individual to have a disability in terms of having “a physical or mental impairment that substantially limits one or more major life activities of such individual,” where such activities include “major bodily function[s],” caring for oneself, seeing, hearing, speaking, walking, eating, communicating, reading, and other things.1 On this model, impairment and disability are related but not synonymous: while my ocular astigmatism is an impairment, given modern technology and social structures I do not experience this as disabling. I must emphasize, however, that I follow Garland-Thomson’s approach to feminist disability studies in seeking to discuss “disability” in such a way that does not simply equate it with so-called impaired bodies or medical diagnosis (2005, 1558). The question of whether the limitations and disadvantages attendant to disability are rightly located in bodies, social structures, the interaction of bodies with social and physical environments, or elsewhere is not to be begged by building the answer into the language. This point is especially important because of the diverse range of disabilities that resist being lumped into a totalizing account. One approach might better apply to some conditions usually considered disabilities than others (here different amounts of pain attendant to different conditions may be especially relevant),2 and the language we use should allow for this. I seek to avoid reference to impairment as a constant, presumptively objective bodily correspondent to disability, as this would imply that something must be straightforwardly physically wrong with the body in question, whether or not this something is identified with one’s disability. This assumption may prove better warranted for some disabilities than others, and as such, an approach of the sort I am taking here may not be attractive to those for whom impairment is a necessary condition for disability. Here I am sympathetic to Wasserman’s proposal to shift discussion from impairment to “disfavored physical and mental variations” (2000, 148) as well as Tremain’s critique (2001; 2002; 2005) of impairment as a foundational premise for the British social model of disability (Oliver 1990; 1996). In general, I seek to discuss disability less in connection to impairment than to atypical modes of embodied functioning. Let me also clarify that, in discussing “trans/feminism,” I refer to a family of recently articulated feminist theories that, contrary to those theories dismissive of and hostile toward transsexuality as necessarily anti-feminist (Raymond 1979; Hausman 1995; Jeffreys 2002), instead have found common ground at the intersections of gender- and trans-oppression for solidarity in gender- and trans-libratory projects. Good examples of this include work by Stone (1991), Heyes
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International Journal of FEMINIST approaches to Bioethics 3:2 (2003; 2009), Koyama (2001), Bettcher (2009), and several contributions to recent anthologies by Scott-Dixon (2006) and Shrage (2009). Following Heyes, I am taking transsexed to describe those of us who (may hope to) undergo physical interventions to bring one’s sexed body more in line with one’s identity, and taking “trans” to be an umbrella term applicable to an array of “multiple forms of sex and gender crossing and mixing” (Heyes 2003, 1093–94).
Disability, normality, and functioning “Is it morally wrong to wish and hope for a fine baby girl or boy?” John Harris asks. “Is it wrong to wish and hope that one’s child will not be born disabled? I assume that my feeling that such hopes and wishes are not wrong is shared by every sane decent person” (Harris 1999, 165). As Harris recognizes, however, the assumed obviousness of his claim seems to rely on the assumption that “disability is somehow disabling and therefore undesirable. If it were not, there would be no motive to try to cure and obviate disability in health care” (ibid., 165). In distinguishing the two approaches to disability presently under consideration, the primary point of contention is not over bodily or functional difference. In articulating her conception of disability, Silvers makes the following point of clarification: None of this is to deny that, in the main, disablement correlates with anomalous, nonideal, or troubling biological conditions. But once it is recognized that no biological mandate or evolutionary endorsement warrants the dominant group’s fashions of functioning as being optimally effective or efficient, we can see that the main ingredient of being (perceived as) normal lies in being in social situations that suit one—that is, in a social environment accustomed to people like oneself. (Silvers 1998a, 76, emphasis original)
The sticking point in Harris’s dispute with those such as Silvers (1998a; 1998b; 2000; 2003; 2005; 2009), Amundson (2000a; 2000b; 2005), Parens and Asch (2000), and Wasserman (1998; 2000) is the degree to which the limiting disadvantageous nature of a specific disability is something inherent to one’s body and so in need of bodily or genetic correction or, instead, something about the socially peculiar ways in which one’s body functions. It is not difficult, after all, to find atypical modes of functioning along the spectrum of human functional difference that have been seen as undesirable in particular social contexts, but for which genetic correction would seem an unmeasured response. Sex selection via embryo selection is a reproductive technology that is already technically feasible,
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and given one’s cultural context, the socioeconomic pressures motivating it can be significant (Spallone 1997; Bumiller 1990; Warren 1985). Here a social analysis would seem to apply straightaway. Neither femaleness nor maleness is an inherently lesser mode of functioning, of course, and as for the many differential impediments for life as women and men in the world, they are better explained by institutionalized sexism and male social privilege than by innate sex differences. Similarly left-handedness (statistically atypical and long associated with wickedness) is, superstitions aside, a perfectly good mode of functioning; whatever functional limitations and disadvantages arise for lefties are attributable to social peculiarity rather than biological abnormality (Barsley 1967). If life is easier for righties than for lefties, it is because our modern built environment has been constructed to work for the dominant group’s modes of functioning. Consider also lactose intolerance, often regarded as functionally abnormal in the West. Yet considering that many people worldwide are lactose intolerant, and considering the historical peculiarity of substantial diary consumption, being lactose intolerant impedes successful functioning only as framed within particular cultural contexts (Ayala and Kiger 1984). Buchanan et al. (2000, 8–9) make a similar observation that the Tohono O’Odham of Arizona and northern Mexico experience high rates of diabetes on a “normal” modern American diet but not on a diet of traditional regional foods. In such cases, successful functioning is not just biological, but crucially, social in cause. Making the case that left handedness and lactose intolerance come to be disadvantageous only in specific social and cultural contexts may seem to be easier than doing so for commonly supposed disabilities such as paraplegia. Yet what the preceding discussion shows is that finding difference attendant to a particular mode of functioning is not sufficient to identify this difference as a disadvantage in an impaired body to be fixed; in understanding the causes of disability, then, we need a more robust account of disability. As Harris notes, “It is notoriously hard to give a satisfactory definition of disability, although I believe we all know pretty clearly what we mean by it” (Harris 1999, 166). He therefore believes he can unproblematically define disability as “a condition that someone has a strong rational preference not to be in and one that is moreover in some sense a harmed condition [where] a harmed condition is defined relative both to one’s rational preferences and to conditions which might be described as harmful [and] relative to possible alternatives” (2007, 91–92). Let us notice, however, that identifying the appropriate class of alternatives is a serious challenge. What, after all, should I compare being in a disabling condi-
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International Journal of FEMINIST approaches to Bioethics 3:2 tion to: to not being alive at all, or to being in some other condition? If the former, then few conditions will count as disabilities; if the latter, then the range of recognized relevant alternatives makes considerable difference. Even a person who is mentally and physically well could imagine herself being better off, and given the option, she may have a strong rational preference to be better off, even if her condition now is not disabling. One reading of disability is that of conditions we would rationally prefer not to be in, relative to, say, the way we normally are, yet an appeal to normality is not without problems. Normal species functioning as proposed by Boorse (1975; 1977) has been adopted by Daniels (1985; 1987) and Buchanan et al. (2000) as an objective criterion for disability, such that “a normal function of a part or process within members of the reference class is a statistically typical contribution by it to their individual survival and reproduction” (Amundson 2000a, 35). The idea here is to locate a notion of functional normality that is biological and asocial from which we might then draw an account of disability appropriate for medical intervention. Amundson asks, “Social concerns aside, does current biology imply a concept of functional normality and a distinction between normal and abnormal function?” (2000a, 33). He then argues that it does not. He also observes that appealing to statistical typicality warrants labeling as abnormal those modes of functioning that fail to satisfy this criterion only if the deviation among species members’ successful modes of functioning is sufficiently small. But in fact, Amundson argues, species members can exhibit developmental plasticity across a wide range of modes of functioning: we are invited to consider statistically atypical success cases such as signed languages and successful hydrocephalists. As Silvers also argues, “it is far from clear that deviations from normal functioning mean either lowered productivity or decreased quality of life” (Silvers 1998b, 108). That is, “in conceptualizing disability, we too easily slide down a slippery slope from attributions of anomalies to verdicts of badness” (2003, 478). Amundson compares the normal species function criterion to outdated biological race categorization so that “the partitioning of human variation into the normal versus the abnormal has no firmer biological footing than the partitioning into races” (2000a, 34). Where scientists once approached race as biologically real, it is now often seen as a social construct with real effects; disability similarly understood becomes a social category imposed upon differential human functioning—that is, a social construct with real effects. In evaluating health, Amundson and Silvers both advise us to attend less to modes of functioning and more to
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our levels of functioning, to attend less to how we function and more to how well we function. In From Chance to Choice, Buchanan, Brock, Daniels, and Wikler seek to break the proposed analogy between disability and race by arguing that unlike racial or sexual discrimination, limited opportunities would still persist for those with disabilities even if oppressive social structures were dismantled (Buchanan et al. 2000, 283–84).3 On this view, disability is characterized as fundamentally limiting persons’ opportunities: “to have a disability is to be unable to perform some significant range of tasks or functions that individuals in someone’s reference group (e.g., adults) are ordinarily able to do, at least under favorable conditions” (ibid., 286). Notice, however, that identifying the appropriate reference group for classification relative to which one’s disability is determined is a point of serious dispute. The authors of From Chance to Choice recognize that infants are not disabled due to their inability to drive, just as men are not disabled due to their inability to give birth, because for them the appropriate reference groups are infants and men, respectively. Yet giving birth, like walking, is something many human adults are ordinarily able to do, at least under favorable conditions. If men are to avoid classification as disabled on the grounds that their reference group is stipulated to be men rather than adult human beings generally, the critic will ask, does consistency not require comparable stipulation of the reference group for those with particular disabilities, such that the appropriate reference groups for color-blind and paraplegic people are color-blind and paraplegic people, respectively, rather than adult human beings generally? Critics emphasizing the prospects for successful atypical functioning might observe, furthermore, that quite often an individual’s ability to perform a particular task depends upon the existing tools, technology, and social structures that might impede or facilitate this performance. To disqualify wheelchairs, Braille, TTY telephones, and other technologies in this context would be to ignore the fact that everyone uses tools. We rarely speak of people as “confined” to bicycles, cars, or running shoes, yet these, like wheelchairs, are tools that enable users to travel and to do things they otherwise could not do (Silvers 1998a, 63).
Functional preference and functional diversity Amundson and Silvers are deft in their respective efforts to undercut appeals to biological normality as a comprehensive asocial analysis of disability. Even while working not to conflate modes and levels of embodied functioning, however, some
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International Journal of FEMINIST approaches to Bioethics 3:2 (particularly currently able-bodied) persons may have difficulty reconciling a functional-diversity understanding of disability with their persistent intuition that their lives would be worse with a physical or cognitive disability. Must such an intuition reveal a latent endorsement of an understanding of disability as abnormal functioning? It need not: my proposal is that you can judge a particular mode of functioning (whether statistically typical or atypical) as better for you given your identity, life history, present circumstances, and future plans, better for you than other modes of functioning would be, and that you can do so without taking this preferred mode of functioning to be universally, objectively better than others.4 You have specific life plans and cherished relationships that depend at least in part on a particular set of physical and cognitive capacities. You need not arrogantly insist that your plans and relationships are better than those others have, but they are your particular plans and relationships. They drive you and bring you joy; you are invested in them psychologically and otherwise. Given such substantial investment, it is not surprising that many people react negatively to the prospect of significant physical or cognitive change, especially when we are happy with how our lives are going. The reverse may also be true: if my current mode of functioning does not enable me to pursue my cherished goals and relationships, I might welcome or seek significant functional change. Furthermore, I might not resist change if I realize that this new mode of functioning does not need be so new and different for me, or if I am excited about these new things that I will be able to do. Disability theorists and activists often emphasize that people without a particular impairment will tend to overestimate the differences between life with and without that impairment and underestimate the range of options compatible with the impairment; as Garland-Thomson reports, “disability life-writing repeatedly attests that adjusting to an acquired impairment is not as difficult as adjusting to the stigmatization and lowered social status that comes from moving into the community of the disabled” (Garland-Thomson 2005, 1567). This is accompanied by the aforementioned tendency to conflate our mode of functioning with our success or level of functioning. One need not deny that the blind do not see or that those with paralysis do not walk. These conditions are different modes when compared to more typical modes of functioning, but one’s overall level of successful functioning might be quite comparable. Appreciating the range of life projects and relationships that can comprise a good life, we may hesitate to presume that life with atypical functioning means life without ability; nonetheless, a genuine appreciation for the range of viable ways in which people live can be compatible with an intuitive or emotional hesitation when contemplating the prospect of significant
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physical or cognitive change. One might resist acquiring an alternative mode of embodied functioning—or seek out an alternative mode of embodied functioning—without disrespecting or devaluing the lives that others lead, on the grounds that a particular mode of functioning more than another is conducive to one’s particular life projects and relationships. We might consider a parallel case involving not disability but gender.5 Would it be unreasonable, and would it require us to think lesser of those living with another sex or gender, if some of us wished to pursue (or alternatively, to avoid) ways to change to what we more closely identified with? The question is not merely hypothetical, as sex-reassignment and trans life in general are genuine options for happy, healthy, successful functioning and flourishing (Bornstein 1995; Brown and Rounsley 1996; Califia 1997; Feinberg 1998). Some people find that their socially presumed sexes or genders do not reflect their self-identities; for example, some intersexed people desire to reverse surgeries performed in their infancy. In these cases, pursuing functional change does not require that one think of those who embrace the sex or gender identity from which one seeks disassociation as lacking something—certainly not. Likewise, those who are happy with their present sexed and gendered modes of functioning may resist the prospect of functional alteration, and do so without casting aspersion on those with different sexed or gendered modes of functioning, because functional change would run at odds with the lives they have constructed. A good life is possible on and across a variety of different genders, to be sure, but it can be different in crucial ways—not so different as has often been presumed, but given one’s specific relationships, goals, projects, and identity, these differences might (or might not) be terribly important. For those enjoying relationships with valued partners, for example, a particular sexed or gendered mode of functioning might facilitate successful functioning and overall flourishing as another sexed or gendered mode of functioning would not. Let us tell a similar story, then, when it comes to disability and functional alteration. Put broadly, there are circumstances in which one must adjust or alter one’s mode of functioning in order to function successfully in terms of one’s identity, life projects, and valued relationships. These things vary from person to person, so whereas a philosopher, for example, might value modes of cognitive functioning that enable her to live a specific sort of life of the mind, someone who values particular physical abilities may seek to reclaim or reacquire these abilities or perhaps acquire them for the first time. Silvers is right that an incapacity to ski is no constraint on those who do not want to ski, which many able-bodied people and people with disabilities alike, after all, do not do (1998a, 94); yet this social
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International Journal of FEMINIST approaches to Bioethics 3:2 fact would be little consolation for Olympic skier Lindsey Vonn were she to suffer a career-ending injury. Consider a fictional example: should we say that kryptonite disables Superman? It strips him of his superpowers (which he has because of his environmental interaction with our sun, which he would not have on his home planet):6 no longer faster than a speeding bullet, more powerful than a locomotive, able to leap buildings in a single bound. You and I would not consider ourselves disabled for our lack of superpowers, nor would Superman had he never left his home planet, but as it is, Superman has a life, identity, projects, and relationships built around his atypical embodied functioning. Christopher Reeve was Superman once, or rather played him to iconic effect on film. Reeve was also an avid sportsman and accomplished horseman, so after he suffered spinal cord injury and paralysis in a riding accident in 1995, his life changed dramatically (Reeve 1998). While he would return to acting with Rear Window and directing with In the Gloaming, other previously cherished activities were no longer part of his life. Meanwhile, in becoming a prominent voice in the contemporary conversation on disability, a voice with specific message of lobbying for cure, he discovered a variety of new activities that were now part of his life. For Reeve to have sought his lost abilities was for him to express the value he found in the things they allowed him to do and to express his preference for them over life with paralysis. Such expressions can, and often do, but need not be accompanied by a presumption of the objective deficiency of paralysis. Consider an exchange between Reeve and Chet Cooper, editor of ABILITY Magazine. Cooper asks Reeve the following question: What would you say to the person who has never been able to walk, and never will regardless of what happens with your research? Their concept is, I don’t need to walk to be a whole human being. I am able to live a fully functional quality life, independent of walking.
Reeve’s response is suggestive: But I’ve never said that they are less of a person. In my condition I would prefer to walk rather than not to walk. That’s where I’m coming from and if there are other people to whom that is not important then that’s their choice and, you know, so be it. I am not judging anyone’s particular beliefs or value system. All I am saying is that there are a lot of people out there in the same condition as myself that would rather not be in a wheelchair. (Cooper 1997)
In this exchange, I suggest, we might read Reeve as making a declaration akin to that made by someone seeking physical alteration in order to bring one’s sexed
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body more in line with one’s identity. In both such cases one seeks to change one’s body, not because one considers another body-type or mode of functioning to be objectively less valuable, but because it fails to enable one’s full expression of one’s reflective desires, projects, and relationships. Were all of Reeve’s remarks on disability, paralysis, and functioning offered in this spirit, he might not have been as incendiary to those who considered him an “Uncle Tiny Tim” (Brown 1996; Williams 1997; 2003; Peace 2002). In describing disability, however, Reeve often seemed to presume an understanding of it strictly in terms of physical, biological abnormality. His characterization of spinal cord regeneration research as the search for a cure seemed to cast paralysis that way, for example, and those critical of him for ignoring social issues of disability found real cause for concern in his dismissive remark, “I’m not interested in lower sidewalks and better wheelchairs” (Williams 1997).
Extending an ethics of self-transformation The remarks I have offered in the preceding section might be characterized as a sort of error theory, such that those who are strongly invested in particular modes of embodied functioning might understand their investment as compatible with a functional-diversity approach to disability. The remarks that I have offered posit no asymmetry in application from so-called impaired bodies to socalled able bodies, from more atypical and marginalized modes of functioning to more typical and dominant modes of functioning. Let us not be hasty in assuming that only persons with socially marginalized, atypical bodily functioning seek to transition to socially dominant, typical bodily functioning, and never the reverse. As myths about disability are dispelled and our reconstructions of social infrastructure and policy enable more successful functioning with atypical modes, this assumption may prove premature. We might consider, for example, Melody Gilbert’s film Whole (2003), documenting the stories of several ablebodied adults with Body Integrity Identity Disorder who seek to become amputees. Here the reflective desire of self-described “wannabe” amputees is to transition from their existing “able-bodied” modes of functioning to specific “disabled” modes of functioning because those modes better facilitate pursuit of their valued projects and identities.7 The suggestion, then, is that we do not need to make entirely different sorts of evaluations for those seeking to regain previously held capacities and those seeking to acquire these capacities for the first time. There are those like Reeve whose reflective desires for functional alteration stem from injury, as well as those
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International Journal of FEMINIST approaches to Bioethics 3:2 whose reflective desires for functional alteration have been lifelong. Still it must be acknowledged that engaging disability as I have is, unquestionably, only a partial intervention in the study of disability.8 My intention is certainly not to privilege the perspectives of those finding themselves intuitively resistant to the prospect of acquiring disability for the first time. I must emphasize that the remarks I make here on differential functioning and embodied personal projects are offered as a supplement to the existing analyses of disability. Given our range of lived experiences and social locations, many involved in contemporary conversations on disability may not find themselves in need of this particular supplement to their thinking on disability. Nevertheless, the sort of intuitive reaction against the prospect of acquiring disability that I have been considering is a common enough phenomenon; hence, it is worth discussing how such a reaction can be shown to be compatible with a functional-diversity understanding of disability. In discussing the relationship between particular life projects and particular modes of functioning, however, we need not assume that all attitudes toward disability and all desires to embody one mode of functioning in preference to another must receive automatic sanction. Far from it: the dynamics of internalized ablism, which are comparable to the dynamics of internalized sexism and racism, are relevant here. When one’s desire is to transition from a statistically atypical, marginalized mode of bodily functioning to a more typical, dominant one, it will be especially crucial to ask oneself whether physiological change is really what is needed to facilitate one’s identity, projects, and relationships or instead whether change at the social level is actually what is required. Underestimating the range of life options available to those living with an atypical mode of embodied functioning is a danger, particularly for those who are currently able-bodied, given the myths and mysteries with which discriminatory social practices have enshrouded disability. There is, furthermore, the question of whether one’s particular life projects, relationships, and identity are worth pursuing. Culturally dominant standards of appearance, beauty, and physical form substantially inform and construct our individual identities; one’s life plans do not spring full-born entirely from oneself. Thus we would be obtuse to pretend that a particular person’s desire to walk again must be a desire that has developed entirely personally, in a social vacuum—but then, neither do our other desires and decisions. Genuine critical engagement with our presumptions surrounding disability requires reflective interrogation of the social origins of our personal desires for or against functional alteration, no less than that to which we subject other significant desires and decisions. In considering significant life decisions, whether related to disability and
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function or not, the reflective person working from a critical perspective must ask whether the decision will genuinely help her in achieving her goals, and furthermore whether these goals are genuinely worth pursuing or are, rather, unduly influenced by misinformation and social prejudice. In such critical self-reflection, conclusive answers can be hard to find, but this is an unsurprising reality of the messiness of life in an unjust social world, whether the focus is on disability or elsewhere. Here, especially, trans/feminisms are illuminating. As disability rights theorists and activists have urged critical interrogation of our deeply internalized presumptions and misconceptions about human functionality, feminists similarly urge critical interrogation of our internalized presumptions and misconceptions about human sex and gender roles. After all, as Heyes rightly notes, “Feminists of all stripes share the political goal of weakening the grip of oppressive sex and gender dimorphisms in Western cultures” (Heyes 2003, 1094). Further, as some disability advocates argued that Reeve’s obsession with cure reflected dominant able-bodied stereotypes about disability, some feminists argue that transsexualism reinforces problematic dominant misogynist stereotypes on sex and gender (Raymond 1979). From the feminist recognition that there are many ways to be women and men, and not merely the narrow range condoned by patriarchy, we are directed to realize that physical alteration is not necessary to claim one’s reflective sex- or gender-identity, so those seeking physical alteration in pursuit of such identity anyway are thereby read as antifeminist. Leslie Feinberg characterizes this view (critically) to be taking transgenderism as “a revolutionary tactic struggle against the patriarchy [whereas] transsexual men and women uphold the oppressive either-or categories of men and women” (Feinberg 1998, 117). In the three decades since publication of The Transsexual Empire, however, feminist theorists have worked to challenge this sort of totalizing dismissal of transsexual experience. Trans/feminist theorists and activists dispute the assumption that transsexualism cannot be feminist and must mimic gender cliché, and acknowledge that “no one is completely free from the existing social and cultural dynamics of the institutionalized gender system” (Koyama 2001, 2).9 In acknowledging the influence of such hegemonic cultural standards and misogynist social power, what ought not to be forgotten are the nontrivial functional differences that surgery, hormones, and other alterations can sometimes address, where asserting one’s gender identity without accompanying physical change sometimes cannot. Thus physical alteration may facilitate the successful expression of one’s identity, projects, and relationships for some but not all trans women and men. Trans/femi-
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International Journal of FEMINIST approaches to Bioethics 3:2 nism can underwrite critical interrogation of our presumptive gender identities without presuming “an implausibly atomistic self that is given normative free rein to assert its gender” (Heyes 2003, 1095), but also without presuming that such critical self-reflection must always or only undermine trans sex/gender identification. Similarly we need not insist, in approaching disability critically, that all of us must be satisfied with the modes of embodied functioning we currently experience and so limit our efforts for change to social policy and infrastructure alone. The blueprint of a trans/feminist approach demonstrates that our attitudes toward disability, like our attitudes toward gender, can be more flexible. Silvers seeks to unpack the connections between gender, physical alteration, and disability in the following way: While some people do not think their corporeal alteration is required to comfortably fit into opposite gendered roles, others seek medical intervention to facilitate their transgendering. Thus the experiences of transgendered people suggest that there are circumstances in which altering one’s body to better execute preferred social roles can be an affirming, rather than a degrading, choice. These considerations show not only the error in supposing that the natural and social dimensions of embodiment can be cleanly dichotomized, but also the superficiality of thinking that we should always take our bodies as they come. Extrapolating this insight to disability helps us see the over-simplification in condemning medical transformations of the body as being expressions of selfhatred. There is no phenomenological firewall separating our awareness of our biological properties from our social experiences. (Silvers 2009)
Making the connection to trans/feminism may not completely solve the complex, deeply personal puzzles of internalized ablism that affect both currently able-bodied people and people with disabilities. Yet doing so shows encouraging and growing evidence of the possibility of intersectional solidarity and self-reflection. Extending an “ethics of self-transformation” (Heyes 2009) to disability will find us taking seriously how our individual desires for or against functional alteration are informed by our social experiences. Further, it finds us critically reflecting on how expressing these desires can serve to support, but also to constrain, other people’s success in socially located functioning. Finally, it helps us see how reflectively endorsing these sorts of desires can be compatible with understanding disability in terms of functional diversity rather than biological abnormality.
Functional diversity and open futures The approach outlined here has its limitations. My primary attention has been to consider how particular modes of bodily functioning can enable one’s particular
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self-expression such that one’s evaluative assessment need not involve a judgment about the objective value of different bodies. As such, the preceding remarks may not constitute much of a guide for proxy decision making over disability in healthcare contexts, except in so far as these remarks serve to further promote a healthy skepticism toward the assumption that one’s reflective intuitions about the disabling nature of disability reveal the brute reality that certain sorts of bodies ought to be corrected or selected against on universal grounds of objective rational preference. We might recall Harris’s claim that “every sane decent person” shares his assumption that it is not wrong to hope that one’s child is born without disability. What motivates the common intuition about disability to which Harris appeals? Informed by the preceding analysis, we can identify at least three possible sources, sources that are not easily distinguished from one another. Perhaps those who agree with Harris’s intuition are getting at the truth that physical impairment is essentially disabling. Alternatively, perhaps things are being obscured by institutional and personal biases against life with disability. Further still, perhaps we are witnessing equivocation between the idea that one would not want to begin living with an atypical mode of embodied functioning and the idea that children who are born functioning in this way must lack something essential. Parents, medical professionals, and other proxy decision makers, then, face a serious epistemic challenge when importing details from our own lives into the decision-making processes, details that may not be shared by those for whom these decisions are being made. Possible commonalities notwithstanding, our own projects, relationships, values, desires, and identities are not guaranteed to be the same as our children’s. Some modes of embodied functioning may better facilitate successful expression of some desires than would other modes, though we must remember that changes in our social and built environments will affect the connection between the mode embodied and the desires successfully enabled. Meanwhile, the pursuit of other desires, values, projects, relationships, and identities may be better facilitated by other modes of embodied functioning, while still others such as personal fulfillment, self-respect, and love will be compatible with a wide range of different modes. Given this variable set of permutations, attempting to identify the mode(s) of functioning best suited for any future child’s good life risks failing to appreciate the diversity of good lives lived. While granting the fallibility attendant to proxy predictions, one might nevertheless seek to identify those options capable of accommodating the broadest range of possible desires. Here one might employ Joel Feinberg’s notion of a child’s “right to an open future” (Feinberg 1980) such that when parents are mak-
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International Journal of FEMINIST approaches to Bioethics 3:2 ing decisions on behalf of their (future) child, the morally preferable choice is the one that eliminates the fewest possible options from which the future child might choose. In extending this approach to the ethics of parental reproductive choices, Dena Davis gives the illustrating example of parents specifically choosing for deafness in a future child, and argues against this parental choice on the grounds that being born deaf (whether considered a cultural identity or a biological disability) when compared to being born with the capacity to hear would substantially narrow the child’s future life options and so violate her right to an open future (Davis 2001, 64–65). One might argue more generally that, other things being equal, the fewer disabilities one has, the more open one’s future will tend to be. In this way, appeal to a child’s right to an open future might give us guidance in proxy decision making concerning disability after all.10 An open-futures approach might seem broadly compatible with my remarks offered as a partial supplement to a functional-diversity approach to disability. Here, however, I must reiterate that the sheer diversity of physical and cognitive conditions commonly seen as disabilities means that generalizations about the prospects for life with disability fit some better than others, and for still others not at all. In assessing an open-futures approach concerning disability, I am considerably impressed by the epistemic challenge of weighing the relative openness of the different futures compatible with different modes of embodied functioning. We will have to determine how to differentiate and count possible futures (presuming that they are countable) and determine the relative evaluative weight to be accorded to each. We cannot assume, after all, that for each atypical mode of embodied functioning associated with disability there exists an able-bodied mode of functioning that contains the set of open futures compatible with this disability as a proper subset of its own open futures. Choosing against a particular disability may serve to close off some future life options for one’s (future) child, depending on the particular mode of embodied functioning selected against. Given these challenges, then, I refrain from building an open-futures approach into my analysis and leave it to others to defend its viability for proxy decision making where disability is concerned.
Concluding remarks My remarks here may provide little help for health-care proxies except as further encouragement against presuming a normal-functioning approach to understanding disability and against extrapolating too widely from our own specific lives in making decisions for others. Universal insight and obfuscating
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prejudice are not the only sources of intuitions about disability; our intuitive reactions in contemplating functional change also can be informed by our beliefs not just about what is conducive to living any good life but specifically about what is conducive to living the particular good lives in which we are already considerably invested. Taking guidance from the construction of intersectional alliance and solidarity in trans/feminism, I have sought to buttress a functional-diversity approach to understanding disability by explaining and validating the likely possibility of our varied intuitive preferences for particular modes of embodied functioning over others while allowing for critical reflection on the bases of such preferences. Taking a functional-diversity approach to disability, then, does not demand a total ambivalence among different modes of bodily functioning. One can recognize the possibility for successful human functioning across a range of modes and still seek the particular modes of embodied functioning that facilitate one’s goals and relationships. Without contradiction, both those whose reflective desires are to walk and those whose are to embrace living with paralysis can work for cultural and social structural change alongside others living different but nonetheless fulfilling lives. Acknowledgments I am immensely grateful to Sara Goering, Karen Emmerman, Monica ufrecht, and Negin Almassi for their suggestions and constructive criticisms A for this paper throughout its various stages of production. My gratitude extends also to this journal’s careful, generous reviewers and especially Shelley Tremain. All errors are, for better or worse, mine alone. Notes 1. Americans with Disabilities Act of 1990 as amended with ADA Amendments Act of 2008, Section 12102. 2. Thanks to an IJFAB reviewer for urging attention to the relevance of pain in the present discussion. It may be that chronic pain attendant to particular modes of embodied functioning makes the application of a particular explanatory model to such modes ill-fitting—just as more generally an explanatory model may fit better for some modes of embodied functioning than it does others, as a single explanatory model does not have to be stretched to fit all things presently identified as disabilities in order to be useful. On the issue of chronic pain and disability, see also Silvers (2003, 478).
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International Journal of FEMINIST approaches to Bioethics 3:2 3. For a similar challenge to the analogy between race, sex, and disability, see Goering (2002, 378). 4. For other discussions of how the fulfillment of one’s desires may be constrained or facilitated by one’s social and physical environmental contexts, see Purdy (1996) and Shakespeare (2005). 5. I explore this analogy advisedly, given Eli Clare’s cogent critique of the presumptive ways in which analogies have been drawn between trans and disabilities issues; I believe my remarks here can be consistent with Clare (2007). 6. It should be said that this account of Superman, kryptonite, and the yellow sun is one interpretation of Superman mythology (Daniels 1998), noteworthy for its compatibility with an understanding of ability as a matter of interaction between body and environment. On other interpretations, kryptonite robs Superman of his superpowers and would kill him given prolonged exposure. Readers partial to these interpretations are invited to ask instead, “Does a red sun disable Superman?” as exposure to a red sun also has the relevant effect of stripping Superman of his powers without the danger of death. 7. See Bayne and Levy (2005). Thanks to Chris Partridge for directing me to Bayne and Levy, and thanks also to an anonymous IJFAB reviewer for recommending giving more explicit attention to a case in which change from an “able-bodied” mode to an “impaired” mode of functioning actually furthers one’s functional desires. 8. Thanks to an IJFAB reviewer for pressing me to be explicit about how attending to the prospect of disability acquisition must necessarily be a partial, at most supplementary perspective on disability. Certainly the experience of acquiring a new mode of embodied functioning can be significantly different from that of living with it (Amundson and Tresky 2008, 115), and as previously stated, I do not seek to privilege epistemically or politically the perspectives of those contemplating the prospect of such an acquisition. My intention is to offer an explanation as to how appreciation of a critically engaged and functional-diversity approach to disability can be available, even to those who have more experientially remote perspectives on living with disability. 9. For further discussion of collaborative feminist engagement with trans identity, politics, and gender conformity, see Heyes (2003), Whittle (2006), Serano (2007), Bettcher (2009), and Shotwell and Sangrey (2009). 10. Thanks to an IJFAB reviewer for suggesting the relevance of an open-futures approach.
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