Valéria M. Souza, a fabulous scholar of disability and Portuguese literature, penned a typically fascinating post on her blog entitled “Complicating Disability Studies’ Relationship to medicine: It’s complicated.” There’s a lot there, and, as ever, I learn much from her posts. I usually agree almost completely with everything Valéria writes, but on this one, I have some points of disagreement. For purposes of disclosure, I generally self-identify as an able-bodied person, although I do have some invisible impairments for which I can quite easily pass (I find a basic distinction between impairment and disability useful, although I am not committed to any real metaphysical defense of the distinction).

In terms of the social/medical model of disability, I start – and I realize I am conversing with a literature scholar here! – with a question about the rhetorical purpose.

Who is the audience for whom the distinction is intended? I teach the distinction in almost every class I teach, and in every single instance, at least a few of the students are usually quite affected by it. Why? One of the basic lessons of disability studies and/or the health humanities is the fact that the biomedical voice is privileged in conceptualizing health, illness, mind, and body. Like most forms of privilege, we are acculturated into it and its effects are often invisible to us. Because of the dominance of biomedical understandings, many people have no idea that there are alternative ways to thinking about the meaning of impairment, illness, and injury. I surmise that many people are similarly unaware of the fact that humans are among the most adaptable creatures on the planet, such that, given adequate resources, they can often find meaning even in the face of severe impairment.

So the point of the social/medical model of disability is IMO less to ground it in a rigorous analytic way – where, as many disability studies scholars themselves have pointed out, it may not hold up – and more to introduce to people an entirely distinct way of viewing the role of socialization in disabling people who experience impairment or illness. I introduce the distinction by inviting students to consider a thought experiment:

Imagine a world in which every street corner had good curb cuts. In this world, all signs of every shape, color, and variety had Braille lettering. Every building was universally accessible to people regardless of shape, size, or impairment. All bathrooms could be accessed by those with mobility impairments. All classes in every university featured trained sign-language interpreters, and trained service animals were made available to all who needed them at low cost. In this hypothetical world, how disabling would people’s various impairments be?

It’s not magic, but in my experience students generally get the point, which is extremely important, IMO. How disabling an impairment or illness may be is to a large extent a function of the ways in which our world is constructed (writ large). The extent to which an impairment or illness disables is powerfully socialized, and, it follows, if we changed aspects of our society, we might be able to help people with impairment or illness make meaning of their experiences in some very powerful ways.

Getting students to this point is really important, IMO, and the distinction helps accomplish the end. Now, what I’ve said here does not really rebut any of your points, nor is it so intended. If there’s validity to the above, however, it does suggest an important role for the social/medical model distinction, at least in helping able-bodied persons become a bit more reflective about able-bodied privilege, about the social construction of illness and disability, and, perhaps more pointedly, about some of our moral obligations to alter social arrangements in such a way as to reduce the extent to which larger social structures disable people experiencing impairment and illness.

I do actually disagree with some of the points in Valéria’s post. For example, I am not sure that adhering to the social model of disability really commits anyone to the four presumptions she notes:

  1. Medicine and physicians are always paternalistic.
  2. Recipients of “medical care” are always “passive” and “disempowered.”
  3. There is no gray area between the extremes of “cure” and “do nothing” when it comes to medicine.
  4. All “medical” care is bad.

That is, in order to find something worthwhile in the idea that social structures are primarily responsible for the extent to which an impairment disabled, we need not believe that medicine and physicians are always paternalistic (although this is a common-enough complaint that I think we’d be hard-pressed to deny it completely). We also can reject the passive Parsonian “sick role” trope while believing that disability is largely socialized; although, again, there seems little doubt that the American health care nonsystem dehumanizes and disenfranchises people, especially those already marginalized by larger social structures. Moreover, I think criticism of the “cure” or “fix-it” model of medicine is not only consistent with the social model, but is actually connected to it. Part of the point of the disability critique of medicalization is to reject the idea that impairment itself is necessarily deviant, that difference is something that must always be fixed and corrected by modern medicine. To be sure, critics of the social model internal to disability studies like Tommy Shakespeare have pointed out that, in fact, good medical care is important to many people with disabilities in a variety of ways (touching on Valéria’s 4th point above). But respectfully, I think criticism of the fix-it model can accommodate this point, especially if that care is devoted to caring and helping people with disabilities manage chronic illnesses and/or impairments, rather than seeking to eliminate those conditions and experiences entirely.

I once wrote in a book review that the history of disability in the 20th c. literally is a history of stigma, although the former is obviously not reducible to the latter. Many born-disabled people tell of a childhood filled with well-meaning attempts to correct their impairments (multiple surgeries, medical interventions, etc.). But it takes no great faculty of imagination to consider what it might mean to a developing person to be informed, week after week, month after month, and year after year, that there is something wrong with them, something deviant, something that requires correction. The idea that impairments should categorically be fixed has a very dark side, and the disability critique is helpful in illustrating that aspect, even if it should not be pressed so far as to deny the very real significance of medical care for many people experiencing illness and impairment.

I might also want to push back against the idea that disability can be defined as a mode of functioning that differs from the majority of people. This idea quickly runs into a number of obstacles, not least because functional status may have a great deal more to do with the resources available to people and communities than with bodily impairment. Moreover, groups of people with certain impairments might fall on the tails of a bell curve – *shudder* – but the extent to which the difference is regarded as disabling is not simply a function of statistical distributions. Some persons with some such conditions may not be deemed disabled, and others falling within the standard deviation may be disabled in a variety of contexts and for a variety of reasons. And this is to say nothing of the ways in which statistical understandings of disability are themselves constructed, nor of the truly ghastly history that links psychometrics, conceptions of disability, and eugenics.

(In fairness, Valéria said bupkis about statistics in her post! But anytime we start talking about a “norm” and majorities within populations, I think we have to face the issue, especially because statistical framing is privileged within biomedical and scientific discourse).

I certainly agree that there is a hierarchy of disability – many disability studies scholars have pointed this out – and many invisible disabilities, including many kinds of chronic illnesses, fall lower down on this hierarchy. This is a very serious and well-recognized problem, and I would not for a moment accept a neat distinction between chronic illness and disability, but it is difficult to see how we can lay the blame for this at the feet of the social model.

In other words, I do not see how it follows from fact that there exists a hierarchy of disability that, as Valéria puts it, “DS needs to reject chronically ill people . . . .” I think there is a lot of excellent work in disability studies that takes as a given, if not argues vociferously for the proposition, that many chronic illness experiences are deeply disabling. For example, one of the central areas of my scholarship focuses on chronic pain, and a number of disability studies analyses of the subject exist. IMO there is absolutely no doubt that the paradigm itself is widely accepted as an impairment that is disabling given how poorly and inequitably we treat people in pain (and subject them to stigma, etc.). It may or may not be true that persons with invisible chronic illnesses, i.e., those who can pass as able-bodied are “rejected” by disability studies, although, again, I want to deny a categorical version of this statement given the general awareness from many within the field of the problem. But even if it were the case, that rejection is a contingent or sociological fact about a given practice, not a necessary implication flowing from the social model itself or the fundamental disability critique of medicalization.

This has been a long response, so I am going to tie it up soon, and I cannot do justice to the richness of Valéria’s post by responding to every point she makes. And I actually agree with many of them. But, in closing, I do want to gently push back against the idea that American physicians are widely comfortable with care in chronic illness paradigms, or that relationships with physicians in chronic illness contexts are “typically long-term ones that emphasize continuity of care, partnership, interdependence, and support” (emphases in original). To be sure, some are fortunate enough to have these kinds of relationships and experiences, but I think it is dangerous to generalize this to the larger American nonsystem of health care. It is generally accepted that we do rescue medicine very well in the U.S., and virtually every other kind of health care delivery (i.e. long-term disease management, prevention, geriatric care, rehabilitation, etc.) quite poorly. What Valéria describes as experiencing are IMO closer to ideals, and some do indeed have such experiences (and I certainly agree that they are ethically preferable!). But I respectfully submit that the notion that providers are generally comfortable with care over cure, or that long-term caring and collaborative provider-patient relationships are the norm in the U.S., is simply not the case.

Thoughts?

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