The premise of this commentary is that Disability Studies and the medical model are parts of each other and to deny either would be to render the other not only incomplete, but also less effective.

In what sense is the "medical model" considered pejorative when applied to disability? Most generally when it is felt to exclude, or at least devalue, other forms of knowledge about disability or about the person with a disability. In addition, criticism of an exclusive "medical model" is sometimes extended to criticism of the practice of medicine, though they are not one and the same. Still, ambivalence toward medicine and health care encourages this identification. That is, when health care is needed it is indispensable. Expert, compassionate care can be essential to psychological as well as physical well-being, especially for those who require regular care or treatment. However, as negative interactions with the health care system have become more common – from delayed appointments, to denial of coverage, to harried providers – frustration has risen, especially among persons with complex or specialized needs. Furthermore, when treatment or assistance is proffered but not needed or welcome (a situation reported by persons who feel others define them by their disabilities) it is, at best, an interruption, at worst, an insult. The unwanted service can challenge a person's own power and efficacy and foster wariness of health care and its professionals. Sometimes the mere use of the term "patient" grates.

A personal reflection

The medical model is recognizable, and also controversial, in fields that are not strictly medical. When I entered graduate school, one line of criticism within clinical psychology centered on the practice of labeling, especially, as in medicine, assigning diagnostic labels. Applying labels or any theoretical model to human beings seemed to restrict subjectivity and to reduce persons to mere exemplars of categories existing prior to the human subject. At the University of Michigan in 1971, the models that dominated the clinical training program were Freudian and neo-Freudian psychoanalytic theories.

For some of us critics, an alternative was to shift the focus away from the individual: Whether or not we agreed with Thomas Szasz (1961) that mental illness was a "myth," we were convinced that psychological problems were, at least in part, socially constructed. Beyond the individual mind, we learned to locate human problems in interactions with others and with social systems, including public institutions. This was the era of an activist Community Mental Health (CMH) movement, when CMH psychologists were likely to spend equal time consulting to a school system, half-way house or police department, as performing counseling or psychotherapy.

What is "social construction?"

But what does it mean for psychological problems to be "socially constructed," and how does social construction relate to the social model of disability? Social construction is meant in two ways. First, is the recognition, to paraphrase Freud (1930) (who, after all, wrote about society as well as about the individual), that society produces its own "discontents." Contemporary examples in human behavior of "going postal" and, more recently, "road rage," have become emblematic of the pressures of modern life. To relieve stress, an individual with resources can obtain counseling; however, institutional change – change that might reduce stress for many – does not come as easily. An example is the history of the Americans with Disabilities Act (ADA): the need to legislate such a basic good in the first place was created by existing societal arrangements (for example, the absence of curb cuts) and by societally ingrained negative attitudes toward dealing with disability. And even as relief was promised, difficulties in implementation and enforcement compounded the stress. Today, despite gains resulting from the ADA, unemployment among persons with disability still stands at 70%, the same as it was in 1990 when the ADA was enacted ("Ann Arbor News," 2004). Thus society "constructs," or creates disability, and the problem clearly goes beyond the individual to the social and to the political. Applying the social model in Disability Studies means recognizing, investigating and combating the societal roots of disability – the ways in which society places barriers to living in the way of persons with disabilities.

There is a second, related, sense of "social construction." That is, our definitions of what are average or expected human behaviors are human inventions, whether derived from social norms, cultural ideas or psychological data. Especially striking examples of research into the power of culture come from Anthropology, the discipline exemplifying the science of cross cultural understanding. For example, it is common to assume (and Western psychology bears out) that following the loss of a loved one, the average person will grieve, that is, appear sad, perhaps have symptoms associated with depression. We expect people in such circumstances to appear anything but cheerful. However, as Wiken's ethnographic research demonstrates (cited in Reddy, 2001, p. 60), in Balinese culture it is the norm for people who have experienced such a loss to appear anything but sad.^[1] Although Wiken's intimate relationships with a few subjects made her privy to their tears, in public, a cheerful mood and happy face were maintained at all costs and considered central to warding off black magic and to helping heal a fractured heart. Without insight into the Balinese culture's construction of acceptable behavior in the face of loss, and the opportunity for intensive interviewing, such cheerfulness would be misdiagnosed by a Western observer as the defense mechanism of denial – an individual psychological interpretation that misunderstands the person and his or her culture.

A contradiction remains

To us, back in graduate school days, our aims were forthrightly humanistic and political as we opposed labeling and broadened our focus to include forces outside the individual. By considering the person to be the "lens" through which social and cultural influences were "refracted," we centered our efforts on determining the meaning to the person of his or her problems and concerns, and we also hoped to have an impact beyond what might be accomplished one person at a time. The people we served clinically were not "patients," but rather "clients" or, even more democratically, "customers." However, a contradiction remained. Despite insight into social sources of human problems, to the afflicted the problems are inevitably felt as personal: they are my problems. Therefore, whether one diagnosed the individual or his social context, whether we served patients or clients, we all learned to practice individual counseling and psychotherapy. Furthermore, as therapists (and future doctors of psychology) we were inevitably applying specialized knowledge with its attendant frameworks and preconceptions, in a non-mutual, asymmetric relationship. We were learning to be experts with all that implies about knowledge and power.

One response to such a contradiction is to abandon clinical science and even much of social science altogether and to approach human beings from a perspective that emphasizes appreciation over appraisal and uniqueness over the average, an approach usually associated with the arts and humanities – and with Disability Studies.

Another response, however, is to consider that normative or typological conceptions (and the professional expertise that goes along with using such language) may not be the problem after all. Instead, the problem may be in how expertise is exercised, how such conceptions are applied. To use the example of diagnostic labeling, if we apply psychological diagnoses to the exclusion of other, perhaps less "scientific" forms of knowledge, or if our label is like an oracle, the last word, rather than a heuristic, a helpful guide in a continuing conversation, then we have misused our expertise. On the other hand, if we routinely examine our expert knowledge and how we apply it, our science then becomes a three-way conversation, with ourselves as well as with the patient. It becomes more appropriately collaborative. And if we use the knowledge of other kinds of experts – artists, writers, people with disabilities telling their own stories – the context of our work is broadened even more to an increasingly realistic level of complexity. Then our interaction with a patient becomes an ongoing inquiry into not only what the person means in his or her words and behavior, but also into what our theory or model means in the context of this individual and his or her world.^[2] It interrogates our own world as well.

This view places requirements not only on practitioners, but also on patients, and on the health care system. Patients and practitioners must have the opportunity for open and honest dialogue. Even with the best and most honest of intentions, persons are often incompletely aware of their feelings or motives. With such complexity, practitioners need time to understand the patient and their interaction. Without support for the time it takes to create an open and reflective dialogue, treatment, including psychological treatment, is superficial and disappointing to patient and practitioner, and ultimately wasteful of health care resources.

The situation between psychologist and patient becomes more complex when the patient has a physical disability or chronic illness. In fields such as Rehabilitation Psychology and Health Psychology, the psychologist is an "allied health professional," that is, allied with medicine in the task of helping patients recover their health or at least some degree of functioning. Typically rehabilitation psychologists work with patients on "adjusting" to their disability or chronic condition which for many include working through grief and loss, becoming "educated" about their "prognosis" and about strategies for "compensating" for "deficits." But despite good intentions, many of the foregoing are fighting words to persons with disabilities. Such language, when it implies that the patient is the problem for the expert to fix, inevitably heightens the contradictions for psychological practice. And such language, if accompanied by a health professional who does not appear to make an effort to understand and to collaborate with the patient in his own health care, is an understandable source of fear and loathing of the medical model that can unfortunately extend to health care generally. How can Disability Studies and the medical model work together to enhance everyone's understanding of disability?

Bringing Disability Studies and the Medical Model Together

In discussing rapprochement it is important first to acknowledge the obvious: the playing field is not level. In representing science, technology and the health care industry, the medical model represents power. The medical model has on its side funding and the legitimacy (and apparent hegemony) of natural and medical science, the so-called "hard" sciences. Disability Studies represents the social sciences and other so-called "soft" forms of knowledge: humanities and the arts. However, each has something to offer the other. From Disability Studies the medical model promises to gain a broader understanding of its patients from their expressive products, life narratives and from social and cultural studies. In expanding to the "big picture" of disability, medicine and health sciences can be more effective because such understanding builds better rapport and bases for collaboration with patients. From the medical model, Disability Studies promises to gain a vital perspective (without which it is incomplete), as well as an opportunity to educate, and a powerful ally. Holding the medical model close creates more opportunities for criticism that are truly constructive rather than dismissive.

A prescription for the medical model:

(1) The primary challenge to representatives of the medical model is to recognize the power they wield – the power vested by society and by individuals simply in the position they occupy as doctors, nurses or therapists. They must understand the need for extra effort to establish and maintain rapport with people whose response to such power may not be automatic trust in their authority. There are at least three features to recognize in this power relationship:

(a) The extraordinary intimacy involved in the activities of examining and treating. This applies whether one is a physician, nurse, physical therapist, occupational therapist, speech and language pathologist, or counselor. As a health care provider one is literally given license to have intimate contact with strangers. Awareness of individual differences in readiness to enter into such a contract is essential to building and establishing rapport.

(b) Different responses to health care between people with occasional versus more frequent or chronic needs. Persons with chronic illnesses or with disabilities requiring frequent attention sometimes suffer from secondary depression or other forms of psychological distress. Possible sources of distress include frustration with the health care system mentioned earlier, or guilt that they are the source of continuing problems, especially for family, but also sometimes for their professional care-givers. The attitudes and opinions expressed, sometimes subtly, by those who treat can have a powerful effect on mood and emotional adjustment.

(c) The opportunity health professionals have to empower their patients. An essential step in such empowerment is recognizing that patients have something to teach their doctors, nurses and therapists. Patients often have great insight into the difficulties they live with every day, and can also educate about the context of their problems – their lives current and past that condition their responses to health care and to those who would help them.^[3]

(2) Training programs in the health sciences are challenged to conquer prejudice against "soft" forms of knowledge, and to make room in curricula for knowledge by and about persons with disabilities. Curriculum designers and scholars from Disability Studies should work together to seek out good examples of such knowledge that are accessible to students of a variety of cognitive styles or experience, for example, those who may be more scientifically or technically inclined. For example, the inclusion of art or literature in technical curricula is sometimes criticized or dismissed as being "just for fun," or as a "break" from the serious material of a course. To make good use of such materials, the meaning of the work must be discussed and made coherent with the rest of the curriculum. This seems obvious, but cannot be assumed.

An invitation to Disability Studies:

The primary challenge for Disability Studies is to resist temptation to fuel an "us versus them" standoff with the medical model. Despite its limitations, the medical model is a pragmatic and efficient means for addressing afflictions of the body, but it also needs assistance from the broad view of Disability Studies to enhance understanding of the disabled population. One form of assistance is to work with training programs as mentioned above; to develop materials which complement and enhance the usual materials of technical and scientific courses, and to create a pedagogy that conveys the value of multiple ways of knowing.

End notes

Acknowledgment- I would like to thank Kristine Mulhorn for the opportunity to pull my thoughts together on this important topic, and to Lisa Engel Evans for her helpful comments on an earlier draft.

1. Charles Bright introduced me to the work of William M. Reddy who argues in the book cited here for the inclusion of history in the usual conversation about the interplay of biology and culture in shaping emotions and emotional expression. back

2. For recent writing on approaches to meaning in the context of rehabilitation counseling, see this journal, Summer, 2002, especially the article by Ross Crisp. Examples from a variety of disciplines of research into the construction of meaning, using narrative methodology, can be found in Rosenwald and Ochberg (1992). back

3. There is a broad literature on empowerment from a variety of perspectives. For rehabilitation research, see especially Zimmerman and Warschausky (1998) for a helpful conceptual model. See also related articles cited in Crisp (2002). back

References

Ann Arbor News (2004). Interview with Susan Hornfeld, CEO of Michigan Ability Partners, 8/1/04.

Crisp, R. (2002) A Counseling Framework for Understanding Individual Experience of Socially Constructed Disability, Disability Studies Quarterly, 22(3), Summer, 2002.

Freud, S. (1930) Civilization and Its Discontents (Joan Riviere, transl.), New York: Jonathan Cape & Harrison Smith.

Reddy, W. M. (2001) The Navigation of Feeling: a Framework for the History of Emotions, Cambridge: Cambridge University Press.

Rosenwald, G. C. and Ochberg, R. L. (1992) Storied Lives: the Cultural Politics of Self-Understanding, New Haven: Yale University Press.

Szasz, T. S. (1961) The Myth of Mental Illness: Foundations of a Theory of Personality Conduct, New York: Dell Publishing Company, Inc.

Zimmerman, M. A. and Warschausky, S. (1998) Empowerment Theory for Rehabilitation Research: Conceptual and Methodological Issues, Rehabilitation Psychology, 43(1), 3 – 16.