Disability Studies Quarterly
Fall 2004, Volume 24, No. 4
<www.dsq-sds.org>
Copyright 2004 by the Society
for Disability Studies


Can Disability Studies Survive and Prosper within Medically-Modeled Curricula?

Alex Lubet
Morse Alumni Distinguished Teaching Professor of Music and Jewish Studies and Adjunct Professor of American Studies
University of Minnesota
Email: lubet001@umn.edu

Feminist theory has led the way in asserting that there is no objectivity; that everyone has a standpoint. Disability Studies (DS) may be the field where this anti-objective stance and the inclusion of personal narrative are— justifiably—most privileged. Personal experience leads me to answer the question of whether DS has a future in academic healthcare programs with a guarded, cynical "yes." But I would add the familiar, though physiologically-challenging advice, "watch your back."

PLUSES

The best reasons to locate DS in healthcare programs are unfortunately the most cynical and self-serving. They are also simple and straightforward. DS specialists—and people with disabilities—continue to be marginalized in academia and need every decent, suitable position available. Healthcare fields typically offer high pay, logistical support, lighter teaching loads, and research opportunities less available in the liberal arts or other potential DS homes. Regardless of the high value DS places upon pedagogy, service, and activism, any emerging field must give research high priority. This is more readily accomplished in the health sciences than almost anywhere else.

Less cynically, health sciences programs obviously assay many of the same topics as DS. There is a need in the health sciences for the humanistic and social perspectives DS can provide. This need is occasionally expressed from within the health sciences themselves. My own experience has been that there has been surprising openness among physicians within medical schools. This may owe to their power and prestige, deriving from their status atop the medically-modeled professions. Physicians' ownership of the lion's share of the cultural capital of the health sciences permits them the luxury of methodological incursions from beyond their domain.

At the University of Minnesota, for example, this permits degree programs in history of medicine, spirituality and healing, human rights and medicine, and biomedical ethics. There are also programs linking medicine and law. These and others exist in other institutions as well. Regardless of whether current faculty in such fields are receptive to DS perspectives, their presence bespeaks a culture in which disability studies might emerge in some form.

There are other reasons to believe that DS might co-exist with medicine Medical practice is ultimately humanistic. Science is capable of providing only the biodata upon which to base quality-of-life decisions, which are philosophical. Determining the priorities as well as the risk assessments of medical research is a socioeconomic and cultural, not a scientific, question. The need for DS should thus be obvious and could be made apparent. (One impediment is DS's own lexicon, which constantly counterposes "medical" and "social" models of disability, a matter to which I will return.)

Some medical fields are more forthright than others in their declarations of humanism. Perhaps psychiatry, integrally linked to psychology, is most obviously humanized, although its current emphasis on psychopharmacology may be fraying that connection. Another area of common ground is the various occupational medicines. Here I have personal experience that has buoyed my hopes greatly for collaborating with physicians.

My first DS article, "Disability Studies and Performing Arts Medicine," appeared in Medical Problems of Performing Artists (MPPA)(Lubet, 2002). It proposed an alliance with a medical specialty that is owing to the aesthetic connection between its practitioners and patients, inherently humane. I worked closely with MPPA's physician-editor, Alice Brandfonbrener, a helpful and encouraging mentor. Mine was the lead piece in that issue and was featured on the MPPA website. Brandfonbrener's editorial in that volume was largely an encomium to my article and expertise (2002).

I, like, many DS scholars and people with disabilities, have a long and storied history with numerous physicians; good, bad, (ideologically) ugly. By far, my own worst experiences with the Medical Industrial Complex (MIC), though, have been with its bureaucracy rather than its practitioners. In the era of the HMO, many physicians share that sense of vulnerability to corporate power with their patients. This may serve as common ground between DS and medicine.

Minuses

Despite their disproportionate academic spoils, healthcare programs are awkward fits for DS, which privileges the sociocultural over the scientific. If the sciences offer more of the "goodies" of academia, they may also be hazardous to the intellectual health of DS students.

In 2003, I was a visiting scholar in a medical humanities program. I attended numerous courses and seminars, mostly healthcare policy and biomedical ethics. These topics appear to be the raison d'être for such programs, serving the medical profession more pragmatically than the department's history, literature, art, and theatre courses. As badly as medical humanities needs DS perspective (and as warmly welcomed personally as I was by my colleagues), their curriculum and our informal discussions only fueled my animus for the party line in their fields. Support for physician-assisted suicide, healthcare rationing, unrestricted human cloning, and the humiliating display of people with disabilities in medical education were abundant.

DS students do not need extensive exposure to such perspectives. Their tuition and time is better spent elsewhere. It is difficult to imagine a DS proponent ever being tolerated as anything more than a visiting scholar in such a program. Although I briefly mentored a few students, they found my perspectives utterly foreign. Life, including graduate study, is too short for ideological and methodological combat when alternatives exist.

On my campus, I serve on committees with healthcare and human services faculty and staff on disability matters. Advocating for DS can be frustrating. It is difficult to determine whether resistance is more ignorant or malicious. Even if the medical model of disability is never literally articulated, it is opined loud and clear. For example, in a recent discussion of the creation of a DS program, a healthcare staffer played devil's advocate, arguing that the University of Minnesota's many disability-related courses in medical fields made DS unnecessary.

Such sentiment—and that is but the most egregious example -- is tantamount to suggesting that women's studies is unnecessary because the medical school offers gynecology; that there is no need for ethnic studies when The Bell Curve accounts for the inequalities; that queer and Jewish studies have no place at a school where the Campus Crusade can "save" such sexual and religious deviants. In other words, why have disability studies when the "problem" is already covered?

Healthcare faculty sometimes express an openness to DS that derives from their hope that such an undergraduate program might prove fallow ground for recruiting graduate students in their fields. In truth, DS, dedicated to outing the medical model's perception of disability as defect will never serve as a farm team for the healthcare professions. The naïve hope that DS will breed therapists and counselors carries the implicit assumption that disability studies is primarily populated by able-bodied "helpers" rather than people with disabilities, for whom self-knowledge is power. I know of no data on the education/career trajectories of DS students. There are likely too few graduates from too few programs to even muster a significant "N." Anecdotal evidence indicates a more typical career path is opposite of what healthcare faculty desire: health and counseling professionals becoming disillusioned and turning to DS.

While there is resistance to DS from many quarters, from where I sit healthcare programs, especially allied healthcare fields beyond medicine, are the belly of the beast. While the health sciences may indeed be where DS is most needed, it is also where it is most vulnerable.[1]

Solutions

Health science majors are among the students who most need a DS perspective. For undergraduates, the best means to achieve this is to include disability issues in university-wide liberal education requirements. There are also graduate programs where students can/must take courses outside their majors, another opportunity to disseminate DS. I have successfully lobbied for a DS course meeting the University of Minnesota's "cultural diversity" requirement. This is but one possible liberal education slot disability studies could fill.

My experience indicates that liberal arts, education, public affairs, and even schools of the arts are all more hospitable to DS than those programs that take place in the hospital. Of these, liberal arts has the greatest reach and grasp, and is thus likely the most apt choice.

Concerns

The relationship between socially-modeled DS and medically-modeled health science curricula must be carefully contemplated. Are these outlooks different but complementary? Or are they irreconcilably opposed, with hostility an inevitable byproduct? What is the best way to rhetorically frame this difference?

One concern is terminology. The model DS terms "medical" is also frequently referenced in disability studies in discussions of the non-medical field of education. Other non-medical "helping fields" like social work and criminal justice are similarly prone to "medical model" problematization—pathologization -- of individuals deemed defective, deficient, or deviant. Without wishing to excuse the medical fields—only to spread the culpability—I recommend we replace the term "medical model" with something more accurate. Although my recommendation is grounded in a desire for precision, it may also ease disability studies' relations with healthcare programs whom it would thus cease explicitly demonizing.

Another concern is ontological. In late May-early June 2004, on the SDS listserv and at the national meeting in St. Louis, there was a discussion, moderated by Devva Kasnitz of UC-Berkeley, aimed at a definition of disability studies. The exchange generated the suggestion that DS, rooted in the social model of disability, might better emphasize its autonomy than its opposition to the medical model. While, once again, following this suggestion may yield tactical advantage for the relationship between DS and healthcare fields, the logic is primarily one of empowerment over dependence or even co-dependence (on the medical model). DS, whose lexicon so prominently features the negative-suffixed "disability" and "impairment," might benefit from a less ontologically oppositional stance.

The abovementioned discussion also called attention to the invisibility of the social versus medical model paradigm outside our own field. The social/medical distinction is certainly real and fair. But those who practice the medicalization of disability are, I think, as incognizant of the medical model of disability —and possible alternatives -- as fish are of water. In a recent disability committee meeting at the University of Minnesota, my reference to the medical model of disability drew shocked umbrage from colleagues in health science fields, unable to find themselves therein. While no one could dispute anything I said, there is more to forming alliances, or at least truces, than winning arguments on points. As DS audits its definitions, terms, and rules of engagement, the potential impact of our discourse upon those with whom we often must deal needs to be carefully considered.

There are few if any places where a DS perspective is more crucial than in the medical fields, whose name disability studies has appropriated to represent the model our field most opposes. The insinuation of DS into healthcare programs has and will continue to require an active engagement with "the opposition." This augurs for unfortunate confrontation and/or compromise. Perhaps the most critical consideration is the impact on our students of the pathologizing perspective of health science programs, something unlikely to disappear anytime soon. It is not a question of whether our students can "take it"—we know they can -- and have. It is more a question of which is the best use of their time and energy.

At the same time, the potential benefits for DS of inclusion in healthcare programs in terms of access to resources and a vital forum are many and obvious. The risks for an exceptionally vulnerable field which speaks for and is largely populated by a historically vulnerable segment of the population are substantial. The decision of where to house programs in disability studies is one that needs to be strategized carefully.

References:

Brandfonbrener, A. G. (2002, June) "But I didn't ask to be a lawyer": Dealing with questions of disability. Medical Problems of Performing Artists, 17 (2) , 57-58.

Lubet, A. (2002, June). Disability studies and performing arts medicine. Medical Problems of Performing Artists, 17 (2) , 59-62.

Notes:

1Without naming names, those knowledgeable about DS in the United States know that the precariousness of disability studies programs in heath science units is far from mere speculation.

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