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


Guidelines for Disability Studies:
Highlights of a 2004 SDS Listserv Discussion

Edited by Linda Chen, Cathy Kudlick, and Corinne Kirchner

Introduction

As an interdisciplinary field, Disability Studies (DS) has faced numerous challenges, both in establishing its legitimacy and in explaining to people inside and outside exactly what it is. On the occasion of the organization's 20th anniversary, the SDS Board of Directors asked the Policy Committee to draft a statement explaining the field and its goals. To gather wide input, Policy Committee Chair Catherine Kudlick circulated a draft entitled "Disability Studies Guidelines" on the SDS listserv. She requested feedback and issued an invitation for all to attend an in-person follow-up discussion at the upcoming annual meeting in St. Louis. Kudlick's message read:

"Dear SDS Members:
In recent years more and more programs describing themselves as 'Disability Studies' have been opening at North-American universities. Given the major role the Society for Disability Studies has played in this field, the Board of Directors thought it a good time to offer working guidelines that help define what our members believe should be core values in such programs and scholarship... Once approved, the guidelines will be posted on the SDS website and widely circulated in academic venues" (Kudlick, April 14).

The response was overwhelming and enlightening, both clarifying issues and definitions, and opening up fruitful new areas for future inquiry and debate. What follows is an edited compilation of about 65 messages posted by 27 people in the spring of 2004. This review highlights the major issues and points of view expressed through that lively e-discussion. Themes that emerged include mixed opinions on the need for, and uses of, DS guidelines; affirmation of the field's multi-disciplinary nature; and disputes over the historical and theoretical primacy of certain disciplines in the DS mix. Central to the discussion was a debate over the meaning of "the medical model," for DS, which resulted in a fascinating interchange over the role of illness and impairment in the "social model." Also, participants reaffirmed the need to highlight differing views of disability in diverse ethnic cultures. The responses revealed the field's diversity and vitality, underscoring that members agree on many key points at the same time that Disability Studies remains a work in progress. As Kudlick explained upon closing the discussion, "We'll never have perfection in this document - I'm just striving for something we can live with, something that gives the right kind of ammo for DS programs to keep the wolves at the door" (Kudlick, May17).

Method

The editors read all the messages several times before selecting and editing the quotes presented here. They first eliminated those that simply agreed with prior listserv participants and then cut a few comments that reiterated prior points. Nevertheless, if the wording was distinctive, some messages that essentially re-stated prior points were retained.

When discussants addressed more than one topic in one posting, their comments were divided and placed according to the relevant sections of this review. For reasons of brevity and focus, the editors omitted a parenthetically-related discussion of where DS books should be shelved in a bookstore (or where a potential purchaser should look to find such books). Other editing consisted mainly of correcting obvious typos and providing "fillers" to clarify overly condensed statements – those are clearly shown in brackets.

All persons whose postings are quoted have been contacted by email or phone to obtain their permission to use the material in this form, for this purpose. Each was shown the edited version of his/her remarks in the immediately surrounding context. They were also asked to indicate how they would like to be identified, including the option of anonymity. Almost all of the participants gave permission to quote with their contact information. One asked to remain unidentified, and one commenter participated in the discussion without providing a last name or affiliation.

However, because of subsequent editing for clarity and conciseness in the "connecting" material, the immediate context of some comments may be slightly different from the version to which permission was given. We believe those changes are sufficiently minor not to hold up publication to obtain new permissions.

The Purposes, and Challenge, of Developing Guidelines for DS

From the very outset, respondents debated whether there should be guidelines at all.

As Kasnitz put it, "Stating what Disability Studies is not is much easier and less confining than saying what it is" (Kasnitz, April 15). Some even went so far as to say that guidelines were unnecessary and counterproductive. "I am curious about why the field needs guidelines.... It seems to me that the use of guidelines 'fences' the field in and keeps other folks out. Additionally, looking at the guidelines, an explicit orthodoxy seems to be delineated. My question then, is do we want the field to be tethered to these guidelines this young in its development (if at all)?" (Meldrum, April 15).

Nevertheless, purposes for trying to develop Guidelines were identified. One formal function was suggested for academic purposes: "I also like the guidelines and appreciate the need for some kind of standard in order for a program to be considered Disability Studies. I could have used these guidelines last year when we were putting together our undergraduate Disability Studies concentration..." (Block, April 15).

One discussant was not only in favor of developing guidelines, but suggested that an accreditation process would make the DS major more attractive to students "and more legit in the eyes of our colleagues" (Barden, April 15).

However, that drew an objection: "Please let's avoid certifications!  This requires surveillance, cert[ification] boards, and all kind of efforts to include/exclude.  Let's stick to guidelines" (Gabel, April 17).

Disability Studies: Multi-Disciplinary Affiliations and Exclusions

Founded in 1984, SDS has evolved over the years, growing from a small renegade group of social scientists to the approximately three hundred members from more than a dozen disciplines today. The discussion over the guidelines inspired Devva Kasnitz to think about the early days and consider Disability Studies as it has now come of age:

"SDS has an interesting history which relates to this...[I am] one of the 20 or so people from the first board (1984), and one of only 3 or 4 who are still alive and still members...........  Back when [SDS] was a baby, we talked so broadly -- film, poetry, literature, Deaf culture were all discussed even though we were maybe 80% social scientists meeting in the incubator of the Western Social Science Association. We split off from them precisely because we wanted to be more interdisciplinary. We actively courted the humanities. I remember Irv [Zola] introducing us to Rosemarie [Garland-Thompson].

"Then, when the humanities folks started to come, we took a lot of flack for excluding the humanities! (Now, many social scientists feel marginalized within SDS.) For almost the first 10 years we had an unwritten rule that no session should be composed of people all from the same discipline nor about only 1 type of impairment.  Both rules broke down as we grew. We needed a chance for people interested in deafness, or EI [perhaps Environmental Illness, clarification not given] or whatever, to talk. And, the humanities folks seemed to need/want their own sessions. It was a tough change for me. I so loved the interdisciplinary dialogue where we all needed to speak each other's languages. Now there are sessions all framed in one discipline and therefore less generally intellectually accessible cross disciplines.

"I won't believe [that] DS can or should privilege one historical/intellectual tradition over another even if our ancestry is not that broad. History may be closer to destiny than is biology but that does not make destiny any less mutable" (Kasnitz, April 17).

The fact that DS is now more firmly grounded in the humanities than in any other area of scholarly inquiry provoked both applause and concern from the membership.

One discussant states firmly: "Place the humanities in the foreground, but also include arts and perhaps education. I think unless the humanities are declared the core of the DS interdiscipline, intrusions of medical modeling will be an ever-present danger" (Lubet, April 14).

However, not everyone agreed that privileging a humanities approach was best. After all, "[t]here is a long history of literature using the medical model (seeing disability as an isolated individual pathology to be cured – more will be said of this below) when writing about characters with disabilities. So humanities are definitely not immune from the medical model. A number of recent DSQ articles discussed how the medical model infiltrates historic children's literature, (the theme issue for the Winter 2004 DSQ www.dsq-sds.org)" (Haller, April 17).

Another discussant tried to bring more nuance to defining a humanities approach, arguing that "a more significant distinction is whether disability is analyzed from an individual or collective perspective. I agree with those who have said that no discipline or set of disciplines should be privileged or given centrality. I don't think that scientific vs. humanistic is the important distinction for Disability Studies. Rather, it's individual vs. social that matters most. The Humanities, I think, have been as invested in individualistic understandings of disability as have medicine and other sciences. In fact, in my field (English literature), a distinction is often made between 'humanistic' readings of texts and social or political analyses of them; readings that are too focused upon individual experience, without attempting to understand how such experience is shaped by social structures, are frequently criticized for being 'humanistic.' So, 'humanistic' interpretations of disability may be just as resistant to the 'social model' as 'scientific ones,' albeit in different ways. For example, a reading of a novel that uncritically accepts representations of a character's disability as moral weakness, misfortune, or tragedy might be criticized, from a DS perspective, as being excessively humanistic and insufficiently focused on social aspects of disability" (Mollow, April 17).

Some listserv participants advocated for the inclusion of specific disciplines, e.g. education and philosophy, and also aspects that are "geographic, philosophical, spiritual, aesthetic, psychological, historical, legal...socio-cultural" (Kasnitz, April 17). Kasnitz describes how DS at UC-Berkeley encompasses "the usual humanities/social science suspects," and also special ed, architecture/Universal Design, computer science, and law (Kasnitz, April 17).

Another: "...[T]his statement on Disability Studies is very important, in my view, and furthers the goals of many of us involved in multidisciplinary disability-related research, teaching, research, advocacy and activism. May I suggest, though, that in the list of disciplines (humanities, science and social science), you also include law. And, that you add 'legal' together with your references to the political, social, cultural and economic factors...I hope you would agree that those of us within legal education who offer a critical legal perspective also contribute to the field" (A. Kanter, April 15).

Another discussant underscores the importance of bringing the field of education into the mix: "I also agree with previous suggestions that education be listed as one of the institutions Disability Studies critiques.  Disability Studies in education is a growing sub-field with a special interest group in the American Educational Research Association (AERA)... So, since many in the educational research community who are also disability rights activists and/or disabled people ourselves bring Disability Studies to education, SDS needs to recognize our contributions.  On the other hand, having guidelines from SDS including education but also indicating the Disability Studies contrast to Special Education would be useful in many ways.  This year in the AERA program, some sessions were listed under the 'Disability Studies' topic in the program that were clearly medical model (e.g., treatments for ADHD).  Having guidelines from SDS will allow me to go to publish the guidelines in the education world to clarify what is/isn't DS" (Gabel, April 17).

Listserv participants generally agreed on the need for multi-disciplinary grounding for DS. "I'm responding to one of the comments made on the definition of Disability Studies that the role of humanities should be paramount.  I would not like to see any particular discipline 'own' Disability Studies..." (Olkin, April 14).

"Geographers, historians, anthropologists, legal scholars, psychologists, theologists, and scholars in the fields of education, literature, or the fine arts -- or of pretty much any discipline -- can all do work that develops theories that examine the social, political, cultural, and economic factors that define disability" (Mollow, April 17).

"DS can be done in ANY discipline or university department, center, or program, many of which don't immediately situate themselves neatly in the contestable tripartite division between humanities, science, or social science: law, architecture, education, etc. I see no point in a closed-ended list anywhere. I'm not willing to include or exclude any specific academic 'discipline,' theory, or method. Rather, what to me characterizes the growth of DS more than anything else is the collective dialogue across and between any impairment -disability taxonomy and the inclusion of the voice of people who experience disability, particularly scholars that experience disability" (Kasnitz, April 17).

Examining the Medical Model as the Traditional Paradigm of Disability

"One problem I've seen for a while... is the location of the Disability Studies group in the American Anthropology Association in the medical anthropology section. In some ways this parallels the broader discussion here on the Guidelines. How do we avoid overly adapting to medical models if and when we choose to place ourselves so deeply within it? And how do we avoid isolating ourselves from other scholars who are doing cutting edge work in a variety of disciplines and remain unaware of the existence of Disability Studies in general?" (Faculty, Unspecified, April 18).

A well-referenced response follows: "Like others, I've enjoyed this discussion and commend the committee for struggling to define Disability Studies.  For now, I'll just comment on a couple of points. The problem with the "medical model" is that it has been the dominant perspective on disability and used to define and interpret the entire disability experience.  My own view is that a Disability Studies perspective questions the medical model and challenges it as the primary metaphor used to represent disability (disability=sickness and pathology).  It does not deny that some disabilities may have biological or medical consequences (e.g., pain). I'm not sure if it matters a whole lot which discipline(s) first challenged the medical model.  However, I think it's difficult to argue that the critique first came from the humanities.  It has stronger roots in the social sciences.  I agree that Szasz and R.D. Laing (both of whom drew on labeling theory in sociology) characterized mental illness as a myth and ideology, not an objective medical condition in the 1960s. They viewed the construct as a way to enforce conformity (and exert social control).

"In the influential 1969 book, Changing Patterns in Residential Services for the Mentally Retarded, which was published by the President's Committee on Mental Retardation, Lloyd Dunn, who was known for an earlier article questioning the effectiveness of special education, had this to say about institutions: 'Frequently, they have been operated on the medical model which views mental retardation as a disease, and has an emphasis on labeling and determining etiology; and once one has viewed mental retardation as a disease and affixed the label to an individual, one has a built-in, self-fulfilling prophecy.'  This came straight from the work of Goffman and labeling theorists such as Becker and Lemert. Conrad and Schneider's 1992 sociology book, Deviance and medicalization: From badness to sickness, provides an in-depth analysis of how many forms of unconventional behavior have been re-cast as medical pathologies.

"The 'minority group model' of disability also has been around for quite awhile.  In his chapter in Linda Krieger's book, Backlash Against the ADA, Harlan Hahn quotes a 1953 study published by the Social Science Research Council: '. . .the very general assumption that in American culture physically disabled persons, like Negroes and children, for example, have the position of an underprivileged minority' " (Taylor, April 19).

More on Medical Model: What to Retain? What to Renounce?

Another discussant points to cultural complexities: "First, to me the 'Medical Model' is as socially/culturally constructed as all the other models. Second, just as there is no one social model, there is no one medical model, not only are there allopathic, homeopathic, etc., but each culture has its own ethnomedical model, and the study of the ethnomedical variations in impairment-disability that I research and teach is definitely part of Disability Studies" (Kasnitz, April 15).

And another: "The concerns expressed about bashing the 'medical model' are interesting. However, I think it's important not to confuse theory with content (or area of focus). I agree that medical aspects of the disability experience can be an appropriate, even necessary, focus for Disability Studies scholars. I, too, find it difficult and fruitless to draw a sharp line between impairment (to use classic social model language) and illness. But saying that medical aspects are worthy of our examination is not the same as saying the medical model is valuable" (Gill, April 17).

"Regarding the medical model, I think that we actually agree on more things than we disagree on. Here's what I think we agree about:
1. Disability should not be understood in terms of individual defect.
2. Bodily difference is often pathologized when it should not be.
3. The idea that medical interventions designed to cure, correct, or
rehabilitate such individual defects are 'the solution' to the 'problem' of
disability is at the root of much of the social oppression of people with
disabilities, because it implies that individual transformation, rather than
broad social change, is what is required.
4. The above idea is the dominant mode of understanding disability, both
within the medical establishment and in the larger society.
5. It is possible to critique this theory of disability (which disability
scholars often refer to as the 'medical model') without objecting to medical practice or criticizing individual medical practitioners.
6. Challenging the dominant medical model of disability should be a
priority for Disability Studies" (Mollow, April 18).

Illness, Pathology, Stigma

A substantial part of the listserv discussion centered on the Medical or 'Deficit' model in which disability is defined as a pathology, disabled people are labeled and stigmatized, and the medical system offers the individual a chance to be 'fixed.'

"...[T]he concept of stigma.... is highly contested and will upset many" (Kasnitz April 17).

"...[A]lthough [as was said above] we seek to demonstrate that disability is not always or only about impairment or illness, we are also trying to remove the stigma attached to these terms. My slight rewording of the last part of the sentence ('impairment, including that which cannot be measured...' instead of 'impairment/disability that cannot be measured...') is intended to clarify that we're trying to destigmatize not only illnesses that medical science can't explain, but also illness and impairment more generally" (Mollow, April 17).

"What I think we may not see eye to eye about is how best to challenge his dominant medical model of disability.  What I was concerned about in the 'guidelines' regarding the medical model -- and what has sometimes troubled me as a recurring theme in disability scholarship -- is the implication that in order to critique this paradigm, it is necessary to insist that disabled people are not sick -- or that if they are, this should be downplayed.  I understand that for many people with disabilities, this is absolutely true, and I think it's very important for Disability Studies to continue to object to the pathologization of many kinds of bodily difference.

"But I also think that we need to nuance our critique of what we have been calling the medical model in order to ensure that Disability Studies does not exclude those of us who define our particular bodily differences as illnesses.  I mean, frankly, I [would] want my particular bodily differences to be 'pathologized,' which sounds like a terrible word but which actually simply means treated as disease.  [I believe] that many people with chronic illness, feel that [their] individual bodily difference is undesirable. Maybe part of the reason for this is that with chronic illness, it's not just a matter of, as you put 'look[ing] or function[ing] in a manner deemed abnormal.'  Although it sometimes is both of those things -- and I agree with your objection to the pathologization of differences in how people look or function -- it's also a matter of feeling ill.  I [would] expect [that] for most people, feeling sick means feeling bad, not merely feeling different.  Pain, exhaustion, headaches, fevers, nausea, dizziness are, from my perspective, negative experiences, regardless of how any particular society views them. I would describe the condition [of a body that has an illness] as "inferior" to the state of health that [such a body] would have enjoyed before becoming ill.  That doesn't mean that [the person] is inferior to [a person with a healthy body].  Nor does it mean that social factors are not also a huge part of disability, or that [a person with a disability is] any less deserving of having these factors changed than they would be if they were healthy.

"
Some of what I'm trying to say here is very nicely articulated in Susan Wendell's article 'Unhealthy Disabled' [Hypatia 16.4 (2001): 17-33]: '[Eli] Clare criticizes the medical model for thinking of disabled people as "sick, diseased, ill people" and says that their bodies do not need cure. Yet some people with disabilities are sick, diseased, and ill. Social constructionist analyses of disability, in which oppressive institutions and policies, prejudiced attitudes, discrimination, cultural misrepresentation, and other social injustices are seen as the primary causes of disability,
can reduce attention to those disabled people whose bodies are highly medicalized because of their suffering, their deteriorating health, or the threat of death. Moreover, some unhealthy disabled people, as well as some healthy people with disabilities, experience physical or psychological burdens that no amount of social justice can eliminate. Therefore, some very much want to have their bodies cured, not as a substitute for curing ableism, but in addition to it.'

"When it comes to illness, it seems to me that the problem isn't
'pathologization' of bodily difference, but rather the cultural assumption hat pathology should be a reason for discrimination, devaluation, or exclusion.  And I think that we risk reinforcing this conception of illness (or disease, or pathology, or sickness, or whichever word we choose) if we exclude pathology from our understanding of disability.

"With that in mind, these are the additional points I had hoped to make by revising that paragraph on the medical model:
1.  Sometimes disability does involve illness/disease/pathology.
2.  Therefore, Disability Studies should challenge not only the automatic association of disability with illness, but also the stigmatization of illness.
3.  Accessible and affordable health care, as well as medical research into possible treatments for chronic and terminal illnesses, should be goals of the disability rights movement.  [Although I agree with those who have said that this third point does not properly belong to Disability Studies so much as to disability activism]" (Mollow, April 18).

"I agree that the problem is partly semantic, and that the phrase 'the medical model' is ambiguous and confusing, particularly given that these 'guidelines' are written for people who may not be familiar with Disability Studies. For example, the proposed guidelines on Disability Studies read, 'It should challenge the medical model of disability. The medical or "deficit" model holds that disability is an individual pathology or defect that can be remedied through medical intervention or rehabilitation.' I think that this can too easily be interpreted as a global statement that disabled people aren't sick: both because it implies that disability isn't 'pathology,' and because the objection to 'the medical model' will probably be understood by most readers as an objection to any medicalized understanding of disability.

"I think even replacing 'the medical model' with 'the dominant medical model' is a big improvement, because it leaves open the possibility that, in some cases, medicalized understandings of some impairments can be valuable.

"I also like Devva's (Kasnitz) suggestions that we consider 'the individual model' or 'the individual deviance model.' These may actually be my favorites, because it's the individual vs. social distinction (rather than the medical vs. non-medical distinction) that seems most crucial and most widely applicable to many different kinds of impairment and disability.

"But calling it the 'pathologic model' is something I think we should definitely avoid. I think that doing so would tend to exclude people who are disabled by chronic or terminal illness. Rather than rejecting words like 'pathological,' 'sick,' 'ill,' and 'diseased,' I would like to see us reclaiming and reworking these terms in the way that the word 'queer' has been reinvented" (Mollow, April 18).

"...[I]f we say, as a guideline, that Disability Studies 'should challenge the "pathologic model,"' it seems to me that we are saying that we should resist understanding disability as that which is pathological -- or, in other words, as illness. For me, the problem with having this as an overarching guideline is that it tends to marginalize people who are disabled by illness. For many people with chronic illness, it doesn't make sense to say, 'my body is just different, not sick.'

"Of course, I understand that many kinds of bodily difference are pathologized when they should not be; in these instances, it is crucial that Disability Studies challenge the 'medical model,' the 'pathologic model,' or whatever we decided to call it. It's just that if we are going to have guidelines about what defines Disability Studies, I think that they should be broad enough and flexible enough to accommodate a range of different experiences of disability and impairment. So that some people can say that they don't want their bodily difference pathologized or cured, and that they see such efforts as ways of avoiding real social change, while others can say 'yes, I do have a pathological condition (or a disease or sickness or illness or whatever), and better health care and medical research are among the social changes that I seek' -- and both of these strategies can be seen as fully compatible with Disability Studies.
I hope that makes more sense..." (Mollow, April 19).

"It's about authority, service, and compliance. We will take care of you if you comply! The Borg are not so imaginary! Only the Borg queen has free will. Even the Supreme Court has enshrined this one in a weird way. If medicine can fix you, you must accept it, but once 'fixed' (by say glasses or drugs), you are no longer disabled and lose the protections of the ADA! Surely other cultures have some better ideas!" (Kasnitz, April 19).

The Social Construction of Theory

"Devva (Kasnitz) makes a good point in observing that theories are socially constructed. We who view critically the medicalization of human difference have constructed the medical model as a mechanism to summarize dominant public renderings of disability. My understanding of the medical model as it's generally referred to in Disability Studies analysis is that it is a paradigm that defines disability as a defect in individual constitution.

"This definition is linked to the premise that such individual difference is wrong, unnatural, and inferior when compared to the non-defective state—in other words, it is abnormal. This premise prompts the conclusion that because the "real" problem of disability is individual defectiveness, the preferred solution to the problem of disability is to minimize or eradicate the defect (There is no room in the medical model for questioning why and how society creates a category such as 'disability'). That whole set of reductionist beliefs and conclusions is THE medical model that Disability Studies challenges. We challenge its insufficiency as a paradigm. We point out that its premises and conclusions are flawed and that they lead to misguided research questions, ineffective clinical practices, oppressive policies, and the reinforcement of social exclusion and devaluation of disabled people.

"If the medical model is understood in this sense--as the dominant and distorted understanding of disability in our particular society--I don't see that there are many medical models. But then, I don't necessarily see the medical model as something promoted primarily by doctors. It is a public paradigm for understanding and responding to people who look or function in a manner deemed abnormal. The medical model references physiology to explain disability, but doctors are not the only ones who pathologize difference. And disabled people are not the only group that is pathologized. For example, feminists also challenge a medical model that rationalizes institutional control of reproduction and other aspects of women's lives.

"Although I don't see that there are many medical models, I do see that there are many different approaches to disability in the health fields. You can even call them 'models,' as in 'practice models,' or disciplinary theories. But I do not consider them to be in the same ballpark as the medical model discussed in Disability Studies. They do not have the same across-the-board paradigm status. I'm sure that some of those clinical models are valuable for treating impairment-related problems. But the medical model is never valuable because it perpetuates misguided notions about disability. Health professionals may need models to guide their clinical work, but they absolutely do not need the medical model. In fact, the most enlightened physicians I know oppose medical model thinking and have replaced it with more complex, relevant, socially aware, and heuristic views of illness, health, and disability.

"I can't help cringing when I hear the widely stated view that the medical model is not all bad and has a proper place in the treatment of impairment. That's like saying that patriarchy isn't all bad and may actually be valuable in guiding services for men!" (Gill, April 18).

Gill goes on to explain how different opinions on "the medical model" reflect different understandings of that phrase: "The medical model is not synonymous with the medical system or medical practice. I still maintain (cordially!) that the medical system can be very helpful and, indeed, valuable--despite its hazards. But the medical model is not useful or valuable to disabled people, if 'medical model' refers to a set of beliefs that conclude that disability is simply a defect located in individuals and that the best response to disability is the restoration of normality. The medical model refers to those beliefs, not to medical practice. Why do we need the medical model in order to have access to technology and medical services? We don't. Unfortunately, they are still too often yoked and, therefore, we must often suffer the former to receive the latter. Disability Studies should challenge the connection between the medical model and medical practice.

"I am committed to involving health professionals in Disability Studies and have gone on record to proclaim that excellent Disability Studies scholarship is being conducted by many health professionals. I would also argue that many of us in Disability Studies should learn a lot more about impairment to ground our thinking. I agree that the expansion of the dialog between Disability Studies and the health professions is extremely important. I hope that it will result in the liberation of medical services from the medical model. This, in turn, will further the liberation of disabled people who need good medical services. I see no paradox in this" (Gill, April 17).

"Saying that we should have conversations between Disability Studies and the medical model or concepts/practices within the medical model isn't the same as saying the medical model is valuable as a model of disability.  Nor is saying many of us 'use' the medical model to get what we want the same as approving of the medical model's pathologization of disability.  However, everyday evidence indicates that the vast majority of us take advantage of the medical model when we think it will do something for us that we want done (e.g., medicate us, extend life when we want it extended, provide technologies that improve function).  If the medical model were outright rejected, if we refused it, then many disabled people would have very different lives and in many cases, those lives would be less fulfilling because they wouldn't involve the use of technologies that help us achieve our goals. So, while I don't think Disability Studies should work within the medical model, I also think it's peculiar that the services resulting from the model are accessed while the model is simultaneously rejected as oppressive.  Perhaps this is a paradox that can't be resolved.  That's OK with me.  I would suggest, though, that it's a paradox that should be recognized rather than pretending it doesn't exist" (Gabel, April 17).

"I doubt if most people in medicine would recognize a strict DS description of what we call the 'medical model' as their primary paradigm. As Carol (Gill) says, it's our abstraction. Medical folks who know us, like Carol's colleagues, understand. Hey, one of SDS's founding board members is an MD! Those who don't know what we mean, do often think we are a bit nuts. "Just wait till they need their appendix out. Then they will run back to us!"  The label 'medical model' has done little to bring medical scholars into DS.  The 'minority group' model, as Harlan articulated it in the 70s, had a similar problem. It did little to bring people of color into DS and the movement, and, it offended many. They felt we were appropriating their experience. So, we backed off the term, but not the idea. I think I feel the same about 'medical model.' I think I've learned from this wonderful exchange that 'medical model' is a problematic term. So, back to individual, or pathologic, or individual deviance model would be both more useful and more accurate. We could have called it the 'social case work model' or the 'special ed model.' Medicine took the hit because of it's primacy in the power arena" (Kasnitz, April 18).

"Too much of the medical system and practice does not allow practitioners the time to look at context....... But, we are more likely to succeed in slowly changing what is thought of as the 'medical model' than we are in replacing the term. So maybe we need to call it the individual model or the pathologic model......... to separate the problematic aspects from the other side which I think of as being empirical. We are not opposed to
empirical research" (Kasnitz, April 17).

Medical Practice & Social Thinking (The Complex Interrelationship Between the Medical Model and the Social Model)

Some commenters seek strategic points of alliance between DS and those who work in medically-related fields, identifying points in their theoretical views that while different, are complementary rather than antithetical.

"... [N]or would I want us to discourage enlightened medical environments from embracing Disability Studies.  My concern, as a psychologist, has been that Disability Studies is largely theoretical with little application to guide clinicians or other types of practitioners.  I would hope that any definition would embrace 'practice' and 'education/training' as well as theory" (Olkin, April 14).

"On the one hand, I think the challenge to the medical model is one of the most important contributions that Disability Studies has made. I absolutely agree that it's crucial to understand disability as the result of social structures and processes, not individual misfortune or defect. I also recognize that an over-emphasis on medical research, interventions, and rehabilitation has often served as a distraction from the ways in which social factors, as you aptly put it, 'determine personal and collective responses' to disability. So I share the goal of challenging the inappropriate or excessive medicalization of many forms of disability.

"At the same time, though, I think it is important for Disability Studies to develop a model of disability that explicitly acknowledges that sometimes disability is pathological; i.e., that it sometimes involves illness or disease. This is certainly the case with disabilities [such as] fibromyalgia and chronic fatigue syndrome. Both of these impairments are illnesses, and I see no reason not to define them that way. In fact, countering the medical establishment's reluctance to recognize them as such is one of the primary goals of activists working on behalf of people with these impairments. This is not only because the pervasive belief that illnesses like these are 'all in the head' often results in the denial of disability benefits, workplace accommodations, and the like. This goal is also important because, for many people who are ill or experiencing chronic pain, adequate government funding of research into possible medical treatments is a high priority. In such instances, it's not a choice between the 'medical' and the 'social' model; rather, the medical is part of the social, as was evident a few years ago when the CDC diverted funds designated for CFS research to other projects that they deemed more important. But as I said before, I recognize that what I'm saying about chronic illness doesn't apply -- and would actually be counterproductive -- when it comes to many other forms of disability" (Mollow, April 15).

"The medical aspects contribute to our understanding of disability, but as disabled individuals have informed me, their experience of disability is formed by the reactions of the non-disabled. For people with disabilities, psychosocial aspects are foremost contributory factors that determine a person's quality of life" (Soissons-Segal, April 14).

"So the question becomes: how can we formulate guidelines regarding the medical model that are coherent and succinct but also take measure of the very diverse needs of people with various kinds of disability? I don't claim to have a perfect solution, but I do have a couple of thoughts. The first is that a common thread between these two very different experiences of disability -- on the one hand, being treated as if you were sick when you're not (or when that's not a fundamental part of your experience of disability); or, on the other hand, being told you're not ill when you are -- is the assumption that medical professionals are the only 'experts' on disability. They, not we, have the ultimate authority in determining whether, in what way, and to what extent we are ill. So perhaps challenging the hegemony of medical 'expertise,' rather than 'the medical model' per se, could be the overarching goal here; in some instances, this would mean challenging medicalized definitions of disability, while in other cases, it would mean advocating in favor of such definitions. Another thought is that social attitudes toward illness/disease/pathology need to be changed. The goal would therefore be not only to differentiate between disability and pathology (which is certainly important), but also to challenge the [social stigmatization of] pathology (which is equally important for people with chronic or terminal illnesses)" (Mollow, April 15).

"There is the fact that at times I want to use the medical model, like when I have an infection....... I don't think we want only alternatives to the medical model. Don't we also want to broaden the medical model itself? And don't we want to study how the individual model has infiltrated special ed and other 'service' professions? If we set ourselves up to challenge only the medical model or primarily the medical model, and only from the outside, then politically we remove ourselves as potential partners with medical researchers and policy makers in primary, specialized, secondary, tertiary, etc. health services.  I just heard a talk by a respected DS researcher and advocate that was primarily epidemiological. It did not 'challenge the medical model' in its approach to disabled people, but the fact that medicine did not know enough about disabled people and their reaction to medical procedures" (Kasnitz, April 15).

The discussion showed how in rethinking the medical model we also need to rethink the social model.

"There is some work within the social model(s) that calls for conversations with the medical model (whatever that is).  Rather than rejecting the medical model outright, it seems time to converse with it while also maintaining a space between it and Disability Studies.  Many disabled people use the medical model to improve function and, as other responses have indicated, are happy that the medical model offers solutions to some problems.  For example, I use medications for my depression and hearing aids for my hearing loss.  These both come from work within and related to the medical model" (Gabel, April 17).

"The social model is so much more than just 'not medical model' but we seem to have some trouble, as Devva suggests, defining what we are rather than what we are not" (Olkin, April 15).

Academics & Practitioners

Some contributors to the discussion understood that Disability Studies was not only interdisciplinary but also brought together both disabled and non-disabled people from a wide variety of personal and professional experiences.

"Of course DS is still growing and now has something akin to orthodoxy to protect. I still regret the non-disabled people who left Disability Studies because they felt the glass ceiling and the disabled scholars because they felt ghettoized. I do recognize that my voice has more power as a Disability Studies scholar than as a specialist in the medical anthropology of immigration and ethnomedicine, which is where I came from 25 yrs ago!  I also realize I live on soft money because of my disabled identity. I'm getting ready to combine the two and do research on the ethnomedicine of disability among immigrants" (Kasnitz, April 19).

"....[A]lthough advocacy is part of who I am, and what the disability movement is, I don't see a university program as necessarily a direct advocacy organization. If fact, we may have more power if we are in the position of developing the arguments, evidence, and data advocates need. And, if we mandate that DS programs advocate for accessible health care, why not accessible housing or transportation or recreation or long term care. How do you justify the primacy of health care advocacy over other life domains. If a program centers itself around theater and art couldn't they choose other battles?" (Kasnitz, April 17).

One commenter addressed Special Educators as a key category of practitioners. She was then referenced by a psychologist who had the following to add:

"...[T]he negative interaction [E. Grace] describes is one I know very well within psychology. We are currently in the process of deciding whether to create a Disability Studies section within Division 22 Rehabilitation Psychology of the Am Psych Assoc., or whether to create our own Division of Disability Studies. A key question is whether D.S. and Rehab Psych can ever be more than an unhappy shotgun wedding, as the two cultures and models of disability clash. My problem is this: I train therapists, and what does Disability Studies have to offer them about practice within a social model? ... The schism between theory and practice is why I wrote my book (What Psychotherapists Should Know About Disability) to try to bridge that gap. But here's the rub. I believe firmly that therapists should adhere to the social model of disability; but I do not believe CLIENTS need to. Yes, there are those steeped in the medical model who, with a little nudge, could embrace the social model. But there are many who hold beliefs in the moral and medical models in ways that serve them, and for therapists to argue with clients about their prevailing views of disability – when those views serve them well—is not often therapeutic. I have no trouble with the idea of teaching from a social model (I teach several such disability courses). But we must start bridging the theory-practice gap for special ed., rehab psych, teaching, research, and clinical practice" (Olkin, April 14).

DS Worldwide, Cultural Views of Disability, Western Dominance

"There is a lot of medical anthro literature contrasting the 'Western' or 'allopathic' or 'bio-medical' model with ethnomedical models from other cultures but most don't have disability anywhere on their radar" (Kasnitz, April 18, 2004).

"Great discussion, as always!! The medical model when situated in Western culture is not only about pathologizing and individualizing difference, it also is about the cultural construction of the 'mechanical body'. This Biological reductionist 'mechanical body' pathologizes differences and demands that individuals with disabilities participate as fully and completely as possible in this model. The medical model categorizes and then demands participation. I see this mechanical construction intertwined with a mechanistic/capitalist society" (JIM, no other identification given, April 19).

"When you define the medical model as DS scholars' construction of a dominant and oppressive underlying paradigm in our particular society, then I'm with you. It has no political utility other than as a foil. However, foils are very useful. I am particularly interested in examining the nature of disability oppression. If the medical model is the source of disability oppression and helps us to explain that oppression, that's useful.

"My project is to see if the Western medical model or other paradigms articulate cross-culturally. Is there disability oppression in other cultures and if so, does it come from a model that 'defines disability as a defect in individual constitution,' or from elsewhere, or is there a difference in emphasis? Ours is a particularity individualized culture. Globalization is spreading our misperceptions, but others may yet define disability as a defect in family constitution, or clan constitution, or household, or in how a ritual was preformed, or something else that still locates the problem in those who are stigmatized. 

"But, maybe others are open to a social model approach and accommodate impairment before disability is the issue. We don't have enough data yet to say. As Patrick has wisely said we need more non-Western fieldwork. I tend to oppose theories that want to expand disability. We have enough global concepts, so broad they are not very useful. I cringe when people talk about disability as something we all experience if we live long enough. Impairment in the context of oppression becomes disability. In our society impairment in old age may be treated as an individual defect, and ageism attitudes may be crushingly oppressive, without disability coming into play. Russell (Shuttleworth) and I are looking very closely at the way medical anthro approaches disease/illness/impairment/disability. What we see is an analytic that is so fixated on cause and cure that disability is eclipsed. Anthropologists seem to easily get past the myopic assumption of individual defect, but they are stuck on cause and cure and most are too disciplinarily parochial that they don't read DS scholarship...." (Kasnitz, April 18)

"I agree with ... recapturing the history and spirit of the formation of SDS.  In the early days, people were very inclusive, exploring of the opinions of others, respectful, interdisciplinary and open to new ideas.  We would be well served by acknowledging and preserving that spirit.  This means that we listen to others and try to understand their perspective before we formulate our ideas.  If we lose this spirit we will become re-balkanized and certainly never be able to understand disability in the context of the non-Western, non-industrialized world which comprises 89% of the world's population. How do we expect to understand these people and their experiences, if we do not talk with them and listen to them" (Albrecht, April 19).

Disability Studies: The Wisdom of Embracing Ambiguity, For Now

"The discussions that have flowed back and forth -- around the meanings of the medical (or deficit) model, disciplinary affiliations and exclusions, the place of advocacy in a scholarly context, accreditation or no accreditation -- have themselves been wonderful examples of what the guidelines hope to support as 'Disability Studies.'  ...If there is anything that Disability Studies should do well (IMHO) it is to 'teach the tensions' within this delightfully messy field rather than artificially or prematurely dissolve or obscure them" (Ferguson, April 18).

"It's good to keep in mind how messy our categories are.  Some are areas, some are methodologies"  (Lubet, April 17).

"I'd prefer to be as inclusive as possible.  Diversity, tension, resistance, and conflict from within can be productive and can support growth when that diversity comes from positions of shared values" (Gabel, April 17).

"From what I read from the many comments on the listserv about the guidelines, might I suggest that these not be rushed, and that we have more time to consider the valuable and often conflicting input from constituents? SDS is taking the lead on Disability Studies, which I applaud. Let us be thoughtful in deriving a document we can stand (or sit, as the case may be!) behind" (Olkin, April 15).

Conclusion

The genesis of this e-discussion was an invitation to SDS members to contribute their expertise and experience in the demarcation of some preeminent "core values" for Disability Studies. The resulting "Guidelines for Disability Studies"..."represent only the surface of a very interesting, much more nuanced discussion" (Kudlick, May 17). Below are the Guidelines approved at the SDS business meeting on June 6, 2004 in St. Louis.


Guidelines for Disability Studies***

The Society for Disability Studies (SDS) invites scholars from a variety of disciplines to bring their talents and concerns to the study of disability as a key aspect of human experience on a par with race, class, gender, sex, and sexual orientation. As a group of committed activists, academics, artists, practitioners, and various combinations of these, we believe that the study of disability has important political, social, and economic import for society as a whole, including both disabled and non-disabled people. Not only can this work help elevate the place of disabled people within society, but it can also add valuable perspective on a broad range of ideas, issues, and policies beyond the disability community, and beyond the study of service provision or the training of providers. Accordingly, we offer the following working guidelines for any program that describes itself as "Disability Studies":

* It should be interdisciplinary/multidisciplinary. Disability sits at the center of many overlapping disciplines in the humanities, sciences, and social sciences. Programs in Disability Studies should encourage a curriculum that allows students, activists, teachers, artists, practitioners, and researchers to engage the subject matter from various disciplinary perspectives.

* It should challenge the view of disability as an individual deficit or defect that can be remedied solely through medical intervention or rehabilitation by "experts" and other service providers. Rather, a program in Disability Studies should explore models and theories that examine social, political, cultural, and economic factors that define disability and help determine personal and collective responses to difference. At the same time, DS should work to de-stigmatize disease, illness, and impairment, including those that cannot be measured or explained by biological science. Finally, while acknowledging that medical research and intervention can be useful, Disability Studies should interrogate the connections between medical practice and stigmatizing disability.

* It should study national and international perspectives, policies, literature, culture, and history with an aim of placing current ideas of disability within their broadest possible context. Since attitudes toward disability have not been the same across times and places, much can be gained by learning from these other experiences.

* It should actively encourage participation by disabled students and faculty, and should ensure physical and intellectual access.    

* It should make it a priority to have leadership positions held by disabled people; at the same time it is important to create an environment where contributions from anyone who shares the above goals is welcome.

Approved by SDS membership in St. Louis, June 6, 2004.

Discussants:

Albrecht, Gary, Ph.D. School of Public Health, University of Illinois at Chicago

Barden, Thomas E., Ph.D. Professor of English, University of Toledo

Block, Pamela, Ph.D., Clinical Associate Professor, Occupational Therapy Program Stony Brooke University. Pamela.Block@stonybrook.edu.

Ferguson, Philip, Ph.D., E. Desmond Lee Professor of Education for Children with Disabilities, University of Missouri, St. Louis, 301 Marillac, One University Blvd. St. Louis, MO 63121-4499, phil_ferguson@umsl.edu.

Gill, Carol J., Ph.D.
Associate Professor, Department of Disability & Human Development
Director of Graduate Studies, Ph.D. Program in Disability Studies
University of Illinois at Chicago

Gabel, Susan, Ph.D., Associate Professor, National College of Education at National-Louis University

Haller, Beth A., Ph.D., Co-Editor, DSQ, Associate Professor of Mass Communication, Towson University

Kanter, Arlene S., Professor of Law & Director of Clinical Legal Education, Syracuse University College of Law, Syracuse, NY 13244-1030, kantera@law.syr.edu.

Kasnitz, Devva, Ph.D., New Focus Partnerships Association of Program for Rural Independent Living, Disability Studies at Cal (DiSC) Institute of Urban and Regional Development, Ed Roberts Postdoctoral Fellowship in Disability Studies Academic Coordinator University of California, Berkeley.

Kudlick, Catherine, SDS Board Member and Chair, SDS Policy Committee, 2003-2004. Professor of History, University of California, Davis, cjkudlick@ucdavis.edu.

Lubet, Alex, Ph. D., Morse Alumni Distinguished Teaching Professor of Music and Jewish Studies, and American Studies, University of Minnesota, lubet001@umn.edu

Meldrum, Richard, Ph.D. Candidate, Disability Studies, University of Illinois at Chicago, 800 S. Wells St. #705, Chicago, IL 60607

Mollow, Anna, Ph.D. Student, University of California, Berkeley.

Olkin, Rhoda, Ph.D., Professor, California School of Professional Psychology, San Francisco, CA, ROlkin@alliant.edu.

Soissons-Segal, Arthur, Ph.D., private practice and author.

Taylor, Steven, Syracuse University






Copyright (c) 2004 Linda Chen, Cathy Kudlick, Corinne Kirchner



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