Sunday, September 02, 2007

Progressive Engagement With Disability

Penny Richards reminds me that -- as Tom Lehrer so memorably put it long before a disabiilty rights community existed -- the annual "make fun of the handicapped" event is going to happen again. For the last few years, there have been protests against Jerry Lewis and his Muscular Dystrophy Association telethon, and they are going to continue.

I'm something of a neophyte in the area of disability theory, though I have a personal interest as well as a historical one. Scholars who study disability distinguish between three models of disability: charity, medical and social. The Charity model is the oldest: the disabled are seen as being a burden, less than fully human, objects of pity, and their survival and lifestyle is determined by the sufferance and generosity of others. The Medical model is more recent: it defines the disabled as imperfect humans, deviants who should be fixed, to the extent that it is possible. "Find a cure" is the cry, and anything less than a cure is a pity. Perhaps the epitome of this view in recent culture is Clint Eastwood's Million Dollar Baby (spoiler alert) in which an athlete chooses death over a disabled life.

The Social model is most recent, and it is at the heart of the disability rights movement. The Social model sees disability in a much more nuanced fashion: disabilities do not affect the whole person (usually), but are part of a continuum (multi-dimensional) of abilities. The "challenge" of disability does not come from the disability itself, but from the ways in which society structures living spaces and habits of interaction with the assumption of ability. That normative assumption of ability is, of course, terribly flawed, because not everyone who's considered "able bodied" is equally so, and the vast majority of the population will experience at least temporary mobility, sensory or cognitive restrictions over the course of a lifetime -- thus the term "temporarily able-bodied." The Social model seeks access, adaptation and accomodation: technological and medical tools to solve problems; architectural, educational and employment changes to increase access for everyone; educating the broader public on the specific nature of disabilities, the essential and full humanity of the disabled, and the general utility of accomodations.

There are two other significant strains within the disability rights movements. The Social theory described above informs a pretty wide swath of disability civil rights activists, but not all of them. There are two other notable positions, each predicated on a negation of an older model: Overcoming/Passing and Separating.


Within the blindness community, activists centered on the National Federation for the Blind approach blindness as an inconvenience equivalent to left-handedness

The real problem of blindness is not the loss of eyesight. The real problem is the misunderstanding and lack of information that exist. If a blind person has proper training and opportunity, blindness can be reduced to a physical nuisance.
That sounds a lot like the Social model, but it's really an inversion of the Charity model: with technology (though the NFB has qualms about it, often pushing traditional low-tech solutions) and good education (emphasizing fully-blind mobility: NFB training centers insist that students with low vision wear blinders and guide dog users abandon them for the duration), the blind can overcome their blindness so they are not at all dependent on the sufferance of others. This extends to an actual philosophical objection to aggressive pursuit of Americans with Disability Act (ADA) "reasonable accomodation" changes, on the grounds that it compromises the independence of the blind to rely on sighted society adapting to their needs. I've heard the organization described as trapped in the "denial" and "anger" stages of grief.

There is also a long-standing tradition, most common among people with limited forms of disability (partial hearing loss, partial vision loss, some mobility issues, etc.) who are the children of "able-bodied" parents, of adapting to the disability by hiding it as much as possible, and "mainstreaming" as many activities as possible. You don't hear it as much any more, but there was a time when it was common for hearing parents of deaf children to refuse to learn sign language, forcing the children to focus on lip reading and vocalization. There was a time when visually impaired children with some sight, or with degenerative conditions, were not taught braille, on the grounds that they should use the sight they have, as much and as long as they have it. In both cases, the families are trying to help -- there's no real malice here, most of the time: we're talking about well-meaning people with flawed ideas -- by keeping their children from acquiring the markers of disability: "passing" instead of adapting. Again, this is an inversion of the Charity model, arguing that the disabled should aspire to emulate ability and eschew adaptation, as though one could "build up strength" and "avoid contagion" and therefore improve one's lot.

Then there is the "Deaf Community"/Pride model: arguing that ASL, etc., constitutes a distinct culture, smaller and different but no less legitimate than the Hearing Culture that surrounds it. This is an inversion of the Medical model: instead of seeing disability as a flawed version of a normative body, disability is a new norm to be celebrated rather than cured. I might include the Paralympics in this model as well, but I'm open to other arguments: my spouse seems to think that it's a reasonably healthy Social model adaptation. (Special Olympics definitely falls in the Charity category) Disability Pride activists strive for separateness: their heroes are the ones who focus their attentions primarily on the disability community itself, who articulate new artistic and cultural forms (or at least themes [or at least identities]) for and about disability. Deaf Pride activists have been known to refuse to authorize cochlear implant surgery which could restore partial hearing; it becomes controversial sometimes when Deaf parents of Deaf children decide to forego the surgery to keep their children within the community.


As a social historian with more than a touch of post-modernism in my system, I suppose that I'm kind of predisposed to see the Social model as "right": Ability and Disability are abstract categories, and the new medical, engineering and digital technologies are blurring the distinction even more than ever. The rising tide of aging Baby Boomers is going to make adaptation to sensory and mobility loss considerably more necessary, common, and economical.

The Medical model, all-or-nothing, cure-or-doom, is grossly outdated. "Lifestyle drugs" and "five-year survivor" and "living with the virus" are the new medical models anyway: everyone needs maintenance and we're still gonna die. The Charity model is just premodern: it's unrealistic and psychologically unsound for everyone involved. The converse positions -- passing/denial and separatism/pride -- are understandable reactions but inflexible and of limited utility to a very small portion of the relevant population.

As an historian, and as a progressive, the Social model and the disability civil rights movements are the key components of the future. If it requires raising loud objections to grossly outmoded public displays of self-indulgent do-gooding, so be it.
[Crossposted to Progressive Historians]

15 comments:

fillip said...

Great discussion. I think a true post-modernist, though (;)) would say what I do: each of the views you discuss contains at least a grain of truth and at least a grain of falsehood!

What I think is really fascinating, though, is what I see as something like monstrous arrogance (though that's not really quite the right way to put it) that tends to define seeing others as disabled and oneself as abled. It seems to me, that if we are really honest with ourselves, we should all be so aware of the limitations of what we can do, and what we can percieve and how we think, that it would seem absurd to define ourselves as able and another as disabled.

And while one could argue that some disabilities are so obvious that they make a relative distinction between disabled and able unavoidable, I think that is only true if one takes for granted a tremendous level of self-blindness, ironically enough.

Btw, thanks for warming up my blog a little!

Ahistoricality said...

That is an interesting point, which I was trying to get at a little bit from the other direction: nearly everyone experiences some mobility restriction or other "disability" over the course of their lifetime, whether it's a broken bone, vision problems, etc., and the continuums of ability stretch well beyond the visibly/permanently disabled.

I never claimed to be a "true post-modernist" (isn't that an oxymoron?), and I'm freely admitting that my preference for the Social model is strongly conditioned by my own history and historiography.

Ahistoricality said...

Oh, and here's the index post for the blogswarm. There's some solid stuff over there, much less... reserved than mine.

Anonymous said...

Great article. Though, in regard to the use of sign language with deaf children: many of the parents who choose to put cochlear implants in their children do also now sharply avoid the use of sign language with them. I've heard stories of doctors even telling parents to forbid sign language. So it seems that oralism is now making a come back, at least among children with cochlear implants. What the parents and doctors don't seem to have grasped is that, even with an implant, their child is STILL DEAF. At best, with a great deal of intensive training, they could become functionally hard of hearing, meaning able to do most of the things a hard of hearing person can do such as talking on a phone if the other person's speech is clear and if they really concentrtate hard. But not all children with implants reach that point. And it still doesn't replace the effortless ease of communication that hearing people take for granted. And when the implant comes off, whether at night or when they're in the shower or in the swimming pool, they're still just as deaf as ever -- how do they communicate then?

Andrea
http://reunifygally.wordpress.com
http://wecando.wordpress.com

Anonymous said...

By the way, I've now done a blog on the telethon (from a Deaf perspective) at http://reunifygally.wordpress.com/2007/09/03/why-deaf-people-should-boycott-jerrys-telethon/

If you choose to come look at my telethon post then I hope you'll also stay and look around at some of the posts I've done about the ADA Restoration Act of 2007, which I think is another subject that people with disabilities should be up in arms about.

NO said...

I liked reading this. there were some great explanations/exploration of important perspectives of disability. I do think however that the move to pride and culture is separatist only in the sense of understanding our oppression, history and different ways of thinking about who we are. i would label this post as a cultural expression, and yet is it separatist? i think labeling pride and sepratist is a bit dangerous to our own movement. we need this stage in order to move from the "angry" "reactionary" place our movement seems to be stuck at. Just some thoughts...

Zach said...

I like your explanations of the different models of disability. However, I think the social model of disability is far from complete because its end goal is a static equality that is not real. Tom Shakespeare has some great explanations of this idea. He claims that if the social model was realized disability would basically go away from our collective consciousness not unlike it would with the medical model's goal of a cure.

I think this is where a more cultural or pride perspective is important. A cultural or pride perspective allows for the struggle for civil rights and inclusion to continue, but with the idea that we can celebrate the different ways we all interact in the world and the literary, artistic, musical, and other expressions that come out of that

Ahistoricality said...

What great comments: Thanks, everyone!

Andrea: You're right -- technological fixes like cochlear implants (or just hearing aids, etc.) are often used as a stepping stone to "passing" even when they are only very partial solutions which really should be paired with other adaptive techniques. And I like your post very much; when I've got more time I'll come back and check out more of your archives.

NO: I'm not entirely sure I understand your point, but I also admit that my post is really just a starting place and I was a bit abrupt about everything. I think individual pride in individual achievements (or even group pride in the achievements of compatriots) is very different from separtist pride which takes its strength from difference instead of accomplishment. On the other hand, the failure to recognize difference, or to treat it as inferiority, is at the root of a lot of the trouble had by many disability communities.

Zach: I think you're partially right: if the social model succeeds, then thinking about disability will be much more complicated, and the simple "disabled/not-disabled" consciousness will go away. And you're probably right that it will tend to diminish the sense of community, but it seems to me that the elimination of functional and social barriers is worth it.

Herdingcats said...

This reminds me of the Twilight Zone episode where the beautiful woman is a "freak" and an outcast in the pig-faced culture.

"Passing" is one of the main reasons why I have resisted losing weight. I didn't want to become part of "the enemy class" of socially acceptable fit people. Well, this attitude was not in my best interest. The fact is that I needed to do what was right for my body and others needed to mind their business and refrain from vicious teasing and gossip.

These lessons can not just be applied to the disabled, but the economically disadvantaged, minorities of all sorts, and other sub-groups of our culture.

Kay Olson said...

I think of the social model as a pithy name for that activity similar to the one in feminism where you first have to prime (or guard) the discussion so it doesn't devolve into "biological truths" about women vs. men. Essentialism. This tiresome priming has to be done over and over again just so that you can have the serious analysis on the social aspects of impairment and disability.

And I think many people see disability rights activists who speak of the social model as confusing or deluded because the model deliberately focuses on what is not medical and individual bodily "flaws." That's a political strategy much like any other activist would use (queer pride): you shout about the aspect of the topic that other people don't see, understand or accept. But that's the model and the strategy. It doesn't define the people.

Great discussion here.

Ahistoricality said...

More great comments, and so far no pro-Telethon hissy fits: I'm loving this!

Herdingcats: You're right: some of the things that would benefit us look like we're doing them for shallow acceptance and we sometimes resist them for that reason. Dieting ranks really high on that list for a lot of people (me, too!), and the similarity of discourse between the disability and fat acceptance groups is actually quite strong at times.

Kay Olson: I'm not sure that I'm willing to pigeonhole the social model as a rhetorical device but you're very right about the problems that social model advocates run into. Glossing over the differences between various disabilities is counterintuitive for a lot of people, but it's an important part of defining the rhetorical and cognitive traps into which a lot of people fall when talking about disability.

fillip said...

True postmodernism might be a paradox, I'd say, not an oxymoron.

misscripchick said...

lol @ not having any pro-telethon hissy fits... it's because they're all at my blog! (seriously..)

i've been thinking about this post a lot this week because you're the first person to compare the pride model to separatism. NO's comment got me thinking too, does separatism have to be negative? (i don't know much about it as a theory.) i like the idea of disabled interdependence rather on expected dependence on nondisabled people and i think there is nothing more powerful than when we are together, as a community. i guess this goes into the whole question of whether it's better to live on an island of just disabled people (or even spec. ed segregated schools for that matter) or in mainstream society. i know the answer is supposed to be mainstream society but it seems so hard.

Ahistoricality said...

MissCripChick: yeah, I've noticed a few other participants taking some fire. I had to do a little explaining on that score myself where I'd crossposted, but it was calm, at least.

[ Oh, and to everyone: Don't let my air of authority (I'm told I have one) fool you: I'm thinking these things through as I go along; I'm not ready to declare myself a font of wisdom just yet. ]

On the pride/separtism issue, I think it might be a short-term/long-term issue, at least in part. In the really long term, the concept of "mainstream" with it's connotations of "normal" ought to fade away to be replaced by a society in which a diversity of form and function are considered normal. In the short term, though, disability affinity groups and functional communities can be useful adaptations, particularly in creating a safe and adaptive and skill-oriented educational setting.

I don't think affinity and separtism are the same thing, either. It's possible to feel a connection to someone with similar characteristics without excluding the possibility that you might have social intercourse or meaningful connections with different people.

I think separtism is a dead-end, myself, but there are groups that believe their difference is important enough to preserve that way -- Romany, Amish, and some Orthodox Jewish sects come to mind.

Andrea Shettle, MSW said...

Hi -- I wanted to make sure you knew about the latest that is happening with Jerry and his, yes, humanitarian award:

Jerry Lewis, the man who runs the annual Telethon to raise money for people with muscular dystrophy in the US is about to receive a humanitarian award. Many people in the disability community is protesting this award because they feel that Jerry perpetuates and entrenches negative, harmful stereotypes toward people with disabilities. More about the petition campaign at: http://www.petitiononline.com/jlno2009/petition.html

There is also a Facebook group at http://www.facebook.com/group.php?gid=40538392681