Scandinavian Journal of Public Health, 2005; 33(Suppl 66): 3–6
ORIGINAL ARTICLE
Vulnerability as a strength: Why, when, and how?
KIRSTI MALTERUD1,2,3 & PER SOLVANG3,4 1
Research Unit and Department of General Practice, University of Copenhagen, Denmark, 2Section for General Practice, Department of Public Health and Primary Health Care, University of Bergen, Norway, 3Stein Rokkan Centre for Social Studies, Bergen, Norway, and 4Department of Sociology, University of Bergen, Norway
Key Words: Culture, normality, people with disability, chronic disease, risk, health resources
The purpose of this issue of the journal is to explore preconditions for transforming demanding experiences from life and sickness into personal health resources, shifting the attention of healthcare providers from risk and weakness to strength and resources. Turning vulnerability into potential assets, the contributors aim for knowledge about the strengths of people who suffer from chronic illness or belong to marginalized groups. Knowledge about people’s personal resources may encourage doctors towards empowering strategies in health promotion, diagnosis and treatment of disease, and rehabilitation suited to accommodate the diversity of members of different marginalized groups. Chronic illness and life conditions that create experiences of oppression give rise to challenges for medical epistemology and practice [1]. The biomedical tradition appreciates objective findings, while subjective symptoms have less clout. Patients with medically unexplained disorders complain that they do not feel taken seriously by the doctor for this reason. Yet, there is evidence for the impressive and independent predictive power of people’s selfassessed health regarding future disease, death, and reduced functional capacity [2]. Patients’ perspectives are underestimated resources to understand more about health and illness, especially when these are different from the doctor’s assessments or assumptions. Salutogenetic perspectives underpin the importance of acknowledging the patient as a person and mobilizing his or her strengths [3], so that the patient’s resistance resources are given the
best possible conditions in the fight against illness, suffering and oppression [4]. The concept ‘‘recovery’’, as it has been developed within psychiatric rehabilitation, means to reflect on oneself in a broad sense – creating meaning and functionality, while still recognizing the realities of disability and suffering [5]. Deegan says that the aim is to be the unique human being every person is, based on his or her assets [6]. The placebo effect demonstrates that the belief that something works – hope – can mediate a medical effect. Biomedical research describes neuroimmunological mechanisms functioning as molecular messengers [7]. Healing and recovery may also be mediated through such mechanisms. Modern culture values conformity, effectiveness, independence, and health. People who are dependent on others, or who deviate from what is considered ‘‘normal’’, run the risk of social marginalization. In the time of modernity, a widespread belief is that suffering, disability, and deviance can and should be eliminated or normalized by medical intervention. The patterns of disease in Western society have changed from infections diseases towards chronic conditions such as musculoskeletal disorders, mental illness, dementia, and consequences of accidents or social stigma. When cure is not optional (chronic disease) [8] or desirable (diversity) [9], the tasks of healthcare providers are changed from ‘‘repairing the failure’’ towards commitment, care, or support. Yet, doctors may also function as agents of modernity, mediating
Correspondence: Kirsti Malterud, Section for General Practice, Department of Public Health and Primary Health Care, University of Bergen, Kalfarveien 31, N-5018 Bergen, Norway. E-mail:
[email protected] ISSN 1403-4948 print/ISSN 1651-1905 online/05/010003-4 # 2005 Taylor & Francis DOI: 10.1080/14034950510033291
4
K. Malterud & P. Solvang
attitudes of oppression, and dismissing the dignity of people who challenge widely held cultural ideals by not striving for what is considered as normal. Our pursuit includes the role of questioning some conceptual foundations. The sciences speak about ‘‘normal’’ versus ‘‘pathological’’ to understand the troubled body. Also the concept ‘‘troubled’’ is part of what we want to explore. Bodily discourses appear to be structured by the normal/pathological grid. On the one hand, the history of this way of thinking is a history of tremendous success. The development of biomedical knowledge has eradicated life-threatening diseases. The medical institutions are integral parts of modern society and have created great optimism about the power of medical thinking as a problem solver. This optimism is also reflected in sciences such as psychology and sociology. On the other hand, the power of biomedical knowledge is said to have suppressed other ways of thinking about the body [10]. Relating to this, other ways of conceptualizing lives with bodies considered different are suggested. Among groups traditionally regarded as disabled or deviant, as compared with the ‘‘normal’’, exciting alternative ways of thinking can be found. Disability groups have started to compare themselves with other disadvantaged groups such as ethnic minorities, gay/lesbian people, or women. Through this, new possibilities are created. All these equalityseeking groups are identified by concepts related to bodily differences such as health, race, sex, and sexuality. This gives them a common denominator. From an analytical point of view, they are further unified by common experiences of suppression and shared sociocultural identities defined by ideas of feminism, gay/lesbian lifestyle and minority identifications [11]. A particularly thought-provoking group in this field is deaf people. They have clearly been defined as a disability group and their bodies constructed as deficit. They have been classified as being pathological by pedagogy, medicine, and the welfare state. The disability identity has been challenged by deaf people. In this supplementary issue of SJPH, Paddy Ladd gives a short outline of the history of deaf people and develops the concept of ‘‘deafhood’’ [12]. This can be a useful step towards depathologizing deaf bodies and people, building conceptions of sign-language-based deaf cultures, and supporting beliefs of validity and quality in deaf communities. This macro perspective needs to be supplemented by stories from deaf lives. We have therefore included a contribution by Jan-Ka˚re Breivik presenting live narratives of two deaf subjects [13]. The presentation and discussion of these
narratives further develop the arguments about the limitations of the medical model of deafness and introduce the joys of being connected to a global deaf movement. Breivik has followed the recent line of pointing out important similarities between deaf and gay/lesbian people. Both groups are born into families where their parents commonly belong to the opposite group, hearing or heterosexual. Due to this home environment, the development of a relation to one’s own group is of crucial importance. For deaf people, this relation is institutionalized through welfare-state arrangements such as schools or camps where a deaf subject will meet other deaf people early in life. For gay and lesbian subjects the relation is developed differently. Most gay and lesbian subjects realize their same-sex attraction in puberty and few institutional arrangements exist for bringing together young people understanding themselves as attracted to the same sex. Finding strength in the identification of homosexuality in a culture where heteronormativity rules is elaborated in the contribution by Anbjørg Ohnstad [14]. She discusses a single case from psychotherapy, illustrating how the telling of the life story can be part of an empowering process when understood in terms of finding a lesbian lifestyle, as compared with the understanding in terms of pathology easily taken up within a heteronormative context. Same-sex attraction has until recently been included in the domain of psychiatry. Gay and lesbian activists have succeeded in making psychiatrists reconsider the diagnostic systems and remove homosexuality from the list of medical diagnoses. Users of psychiatric services have also challenged the status of their diagnoses as pathological. Yet, more often, people with mental disabilities struggle to cope with life. Medication is an important aid for many of them, but a range of other, more vital factors in life often contribute more significantly to the capacity of resilience. In this issue, Pat Deegan presents a study of people diagnosed with psychiatric disabilities [15]. The informants share a broad range of strategies for coping, which Deegan labels ‘‘personal medicine’’. This concept includes health resources related to social roles and activities that gave the informants a sense of direction, meaning, and purpose. Another puzzling group for the medical profession and science is women with muscular pain. Although disabling symptoms are experienced, identifiable signs and causes are difficult to find. This situation calls for the encouragement of strategies comparable to the idea of personal medicine. On the topic of muscular pain we have included two perspectives.
Vulnerability as a strength First, Sissel Steihaug discusses how chronic muscular pain can be understood [16]. Her main conclusion is to point to the multifaceted causes of muscular pain. She describes a ‘‘remembering body’’, ‘‘a body of stories’’, expressed by both posture and verbal associations in the consultation situation. Important for the doctor is to acknowledge the patients’ experiences, their perceptions of reality, especially when these are different from the doctor’s own. The second perspective presented in this issue points to the importance of challenging discourses where experienced pain is constructed as hysteria. Anne Werner and Kirsti Malterud point out admitting the shortcomings of medicine as an important road to empowering the patient with chronic pain [17]. Rather than feeling shame or being blamed for medically unexplained symptoms, patients should be encouraged to concentrate on the empowering elements in life with recovery potential outside the ordinary focus of the medical consultation. Empowerment in medical encounters is also an issue to be understood without reference to a particular group such as those we have presented above. Empowerment can only be understood in the context of what it is supposed to challenge, which is oppression. This is a main focus in the contribution by Janecke Thesen. She presents a model of oppression in the consultation, including stereotyping, prejudice, and discrimination as important elements [18]. The doctor is often not attentive to this process. As an alternative approach, Thesen suggests a model of acknowledgement based on a process including diversity, positive regard, and solidarity leading to empowerment. The shift in ways of thinking is crucial to further develop the way health services work. In the final contribution to this issue, Isaac Prilleltensky presents a model aiming for further conceptual clarifications on the relation between strengths/deficits and detachment/empowerment [19]. His perspectives are useful for everyone involved in the promotion of well-being, and such clarifications are especially important for teaching purposes. We wanted to introduce and develop a variety of perspectives on the issue of the strength of assumed weakness. The common denominator is the constant focus on social power within the troubled lives. All those groups of people we discuss here experience a situation where medicine in some way or other has established authority. Yet, the ability to cure by medication or rehabilitative measures is limited. Some groups even question the whole idea of being assigned to a diagnosis. Their answer is that their situation is one that is at best explained by cultural variety. This calls for awareness of the social forces
5
present that can encourage (or obstruct) processes of resilience and empowerment. Bearing this in mind, the best start we could find for this supplementary issue is the thought-provoking perspectives of Nils Christie, in his essay concerning deviance as strength [20]. Christie points out that the treatment of disabled people in Norway has been based on an idea of assimilation. But if deviance is to be turned into strength, then we should organize for diversity. And on this train of thought, Christie says, the ghetto can become a valuable and empowering social model for those we used to call ‘‘the weak ones’’. References [1] Malterud K, Candib L, Code L. Responsible and responsive knowing in medical diagnosis – The medical gaze revisited. Nora 2004;12:8–19. [2] Idler EL, Benyamini Y. Self-rated health and mortality: a review of twenty-seven community studies. J Health Soc Behav 1997;38:21–37. [3] Antonovsky A. Health, stress, and coping: New perspective on mentaland physical well-being. Washington:Jossey-Bass, 1979. [4] Malterud K, Hollnagel H. Talking with women about personal health resources in general practice: Key question about salutogenesis. Scand J Prim Health Care 1998; 16:66–71. [5] Anthony WA. Recovery from mental illness: The guiding vision of the mental health service system in the 1990s. Psychosocial Rehab J 1996;16:11–23. [6] Deegan PE. Spirit breaking: When the helping professions hurt. Humanistic Psychologist 1990;18:301–13. [7] Ader R, Cohen N, Felten D. Psychoneuroimmunology: Interactions between the nervous system and the immune system. Lancet 1995;345:99–103. [8] Steihaug S, Ahlsen B, Malterud K. ‘‘I am allowed to be myself’’: Women with chronic muscular pain being recognized. Scand J Public Health 2002;30:281–7. [9] Solvang P. The emergence of an us and them discourse in disability theory. Scand J Disabil Res 2000;2:3–20. [10] Stiker H. A history of disability. Ann Arbor: University of Michigan Press, 1999. [11] Galvin R. The paradox of disability culture: The need to combine versus the imperative to let go. Disability and Society 2003;18:675–90. [12] Ladd P. Deafhood – a concept stressing possibilities, not deficits. Scand J Public Health 2005;33(Suppl 66):12–17. [13] Breivik JK. Vulnerable but strong: Deaf people challenge established understandings of Deafness. Scand J Public Health 2005;33(Suppl 66):18–23. [14] Ohnstad A. Speaking vulnerable issues into existence: Their consequences for psychotherapy. Scand J Public Health 2005;33(Suppl 66):24–28. [15] Deegan PE. The importance of personal medicine: A qualitative study of resilience in people with psychiatric disabilities. Scand J Public Health 2005;33(Suppl 66):29– 35. [16] Steihaug S. Can chronic muscular pain be understood? Scand J Public Health 2005;33(Suppl 66):36–40. [17] Werner A, Malterud K. ‘‘The pain isn’t as disabling as it used to be’’: How can the patient experience empowerment
6
K. Malterud & P. Solvang
instead of vulnerability in the consultation? Scand J Public Health 2005;33(Suppl 66):41–46. [18] Thesen J. From oppression towards empowerment in clinical practice: Offering doctors a model for reflection. Scand J Public Health 2005;33(Suppl 66):47–52.
[19] Prilleltensky I. Promoting well-being: Time for a paradigm shift in health and human services. Scand J Public Health 2005;33(Suppl 66):53–60. [20] Christie N. Deviance as strength. Scand J Public Health 2005;33(Suppl 66):7–11.
