Today's entry in the Lexicon features the social model of disability. Much of what I have to say here dovetails nicely with the entry on medicalization.
For much of the last two centuries, disability has been understood in social terms according to an allopathic medical model. By this I mean to say that disabilty has perpetually been defined as a pathology, as a lack, as a dysfunction. Plato argues in the Republic that one cannot define justice without experiencing injustice, and disability has generally been comprehended in terms of the lack of function that a "normal" person might enjoy. A person whose foot has been amputated is therefore disabled because they lack the function that a "normal" person with two feet would enjoy in that foot.
Over the last several decades (or even less -- disability studies is quite a young field of inquiry), theorists have begun to challenge this medical model of disability. They argue, instead, that disability is largely socially constructed, that it is a function of social practices and attitudes rather than actual physical impairment. What does this mean?
Consider, for example, what the lived experience of disability would be like if every building was accessible to disabled persons, if every bathroom in every building was accessible. What if every curb had adequate cuts for persons in wheelchairs? What if all public schools provided adequate access to interpreters fluent in sign language? What if all restaurants had menus in Braille?
The point, which to me seems undeniable as far as it goes, is that some of the lived experiences of disability are constructed by the social realities of living as a disabled person. If, for example, every building was actually accessible to persons in wheelchairs, the limitations resulting from the person's impairment would be profoundly different. The accuracy of this perspective is apparent in the divergent experiences of disabled persons touring countries with widely different accessibility profiles. In Great Britain or the Scandinavian nations, for example, which generally spend much more time, effort, and $$ in enhancing accessibility, the extent of the limitations for a disabled persons is likely to very different than, for example, in the U.S. or Japan.
From this perspective, then, the conclusion is that disability is, to some extent, socially constructed rather than defined by medical assessments of impairment. The parameters of disability are constructed by social practices, and the attitudes and conceptions that inform those practices, more so than by actual physical impairments.
This is a core aspect of the social model of disability, though there are many more features of the model that are relevant. I will mention two. First, one of the core features of a medical model is the "fix-it" mentality. A person comes down with some kind of illness or injury, and seeks medical care to fix the problem. This is uncontroversial by itself, of course. But the fix-it mentality, many disability theorists and advocates point out, has caused a very great deal of harm. Consider, for a moment, what the social impact could be on a person, who, since their early memories, have constantly been told that they are, in essence, less than what they should be, that they are less than whole, somehow incomplete, inferior to others who do not have the impairment(s) at issue.
I can only begin to imagine the incredible pain and damage that some such persons might experience over a lifetime of constant, often painful attempts to "fix" their problems. Disability advocates have long referred to the realization of the harm inflicted by the fix-it mentality, and of the fact that the mentality is imposed by others (though too often internalized by the disabled person) as "coming out as disabled." The language is intentional in its resemblance to the process of coming out for gay, lesbian, bisexual, or transgendered persons. In both circumstances, the individual decides that they no longer will allow others to define the nature of their own impairment, that they no longer will allow their own lived experiences to be defined in terms of a lack, in terms of what they are not, in terms of "abnormality."
All of this is not to deny the profound good that comes from the fix-it mentality of the medical model in general. If I break my arm, I seek medical care with the abiding expectation and hope that it will indeed be fixed. My point here is that the fix-it mentality has a dark side as well, and this darkness has historically been visited most frequently on disabled persons. The rejection of the fix-it mentality plays a part, for example, in the notorious debates over whether it is ethical to allow Deaf parents of a Deaf infant to refuse a cochlear implant on behalf of their infant. To many, but by no means all, persons who self-identify as part of Deaf Culture, their deafness is not an impairment at all -- it is, they argue, exactly like living in a country whose language you do not speak (Deaf people obviously do possess a language [sign language]; it is just is not one most people "speak"). Accordingly, some Deaf persons see the effort to fix or correct their child's deafness as a continuation of the same rejection and invalidation of the worthiness of living as a Deaf person that characterizes the fix-it mentality.
(I am not here defending this view, but merely trying to explain my own perspective of how some of the views of parents who oppose such cochlear implants might be related to views on the social model of disability).
Historically, judgments of abnormality, of a life defined only by deficit, have had grave consequences for disabled persons. The eugenics programs of the late 19th-early 20th century had disastrous consequences for disabled persons (the Nazis murdered an estimated 250,000 disabled persons), and the underlying view of the social worthiness of disabled persons is also evident in the properly infamous decision of Buck v. Bell, which contained Justice Holmes's notorious aphorism, "Three generations of imbeciles are enough."
Second, as mentioned in the Lexicon entry on futility, another problematic regarding the social model of disability is the relatively massive body of evidence suggesting that nondisabled persons consistently underestimate the quality of life of disabled persons. If this is so, it is unsurprising that some disability rights advocates are most concerned about permitting nondisabled persons to make quality-of-life determinations (of futility) for disabled persons in end-of-life scenarios. This again shows how significant attitudes towards and conceptions of disability are in constructing the lived experiences of disabled persons.
Finally, it should be apparent that the social model of disability is hardly uncontroversial. While it seems difficult to deny that much of the lived experience of disability is informed and constructed by social practices and attitudes, more than a few disability scholars and advocates argue that to focus solely on the social aspects of disability is to ignore the physical, material impairments that also produce those lived experiences. Other concerns include questions about the coherence of the community of disabled persons (given such wide variations in both the nature of the impairment and the attitudes towards disability among different cultures and countries), as well as the role of political activism in raising consciousness of disability and of the socialized aspects of disability.
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Bibliography:
The Disability Studies Reader (ed., Lennard J. Davis)
Claiming Disability: Knowledge & Identity (Simi Linton)
Handbook of Disability Studies (eds., Gary L. Albrecht, Katherine D. Seelman, Michael Bury)
The New Disability History: American Perspectives (eds., Paul Longmore & Lauri Umansky)
Disability & Contemporary Performance: Bodies on Edge (Petra Kuppers)
Stigma: Notes on the Management of Spoiled Identity (Erving Goffman)
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