Monday, May 01, 2006

Blogging Against Disablism

(WARNING: Long, personal post here. Feel free to skip if you're just looking for the news.)

I hadn't been sure what to do for Blogging Against Disablism Day. I'm against disablism (even if we don't usually call it that in the USA), as anyone who takes a look at the articles I've written or the kinds of clients I've represented can tell. But I don't usually use this blog as a forum for my deep views about disability.

A friend and colleague told me today that what's great about my academic work is that it forces people to face up to the fact that they're resistant to the ADA. I hadn't really thought about my work that way, although people clearly are. And I have to say that as a person who spends a lot of time thinking about and working on disability issues, I am continually stunned by how little traction the civil rights model has had with even enlightened, educated folks.

Maybe I have a bit of the zeal of a convert on these issues. I don't have any particular disabilities. When I went to work as a young lawyer for the Civil Rights Division of the U.S. Justice Department (working for Deval Patrick, a great civil rights leader who deserves your support in his run for Governor of Massachusetts), I wanted to do voting rights, fair housing, employment discrimination, school desegregation -- everything except disability rights. This was in the early days of the ADA, which I thought of as Republican civil rights legislation. Everyone likes people with disabilities, I thought (though I probably used the term "the disabled"), so disability rights work is too easy -- not the hard work of going after the bad guys that I thought civil rights work entailed.

As it happened, I ended up getting assigned to the Division's Appellate Section, where I could work on the whole range of civil rights issues without being limited to any one kind of litigation. I started off doing a lot of voting rights work, which I really loved, and some hate crimes work, which I thought was very interesting and important. But the ADA was new, and the courts were resolving a lot of uncharted issues under the statute, so there was plenty of disability rights work to go around.

Inevitably, I picked up a disability rights case. It involved a 20-year-old with very mild hemophilia who wanted to be a firefighter. His condition hadn't kept him from playing sports or serving in the military, but the local fire department refused to hire him. When he sued, they defended (ultimately successfully) on the ground that his hemophilia was so mild that he had no "disability" within the protection of the ADA. In a brief and argument before the Fifth Circuit Court of Appeals, I tried to convince the court that if the fire department thought the plaintiff's condition made him unable to work as a firefighter (or, indeed, in any job involving a high risk of trauma), it "regarded" him as disabled for purposes of the ADA. But I lost.

In that case, I saw the same kind of small-minded aversion to difference that one still sees in race and gender cases. The fire department saw a diagnosis of hemophilia on the plaintiff's medical record, and he all of a sudden became a category rather than an individual -- he became something fragile and untouchable. A talented kid who wanted all his life to be a firefighter was kept out because the fire department didn't know how to deal with people who were different. And the federal courts wouldn't even let him show that the refusal to hire him was irrational -- that he really was just as qualified as everyone else!

Now I felt the same moral outrage that got me into civil rights law in the first place. I kept doing race cases, but by the time I left DOJ I was spending most of my time on disability rights cases. I worked on cases that highlighted for me the harm of unnecessary institutionalization. I worked on a case about the fear and exclusion faced by people with HIV. And I worked on cases in which people with disabilities were just demanding to be allowed to live the same kinds of lives as everyone else. They were seeking ordinary things, like the opportunity to go to a basketball game and see the action on the floor, or the chance to cast a secret ballot on election day. And they were met by business owners and bureaucrats who were annoyed at being forced to listen and respond to these people about whom they had taken no account in constructing their buildings and their routines.

When I entered the academy a few years after I left DOJ, it was clear that disability rights would be a major focus of my scholarship. I was interested in the connections between disability rights law and other kinds of civil rights law, and I wanted to tease out what the disability rights movement could teach us about civil rights generally. I also wanted -- and this has been more controversial -- to take seriously the tensions within the disability rights movement. No social movement is a monolith, and the disability rights movement is no exception. I wanted my work to be true to all of the complexities and contradictions of the movement. I also wanted to keep working on disability rights cases, to try to help the law develop in the right way.

After my first article on the ADA had been accepted for publication, my wonderful twins were born. My son was born with a very rare physical disability, and he had his right foot amputated at four months. Although I'm very cognizant of my epistemic limitations as a nondisabled parent, the last six-plus years have given me a new, complementary perspective on disability in America. I've seen, from the patient's side, how the medical and insurance systems deal with (and fail to take account of) people with disabilities -- even "minor" ones. And I've seen disablist attitudes in action: the people who thought my son's physical disability was matched by an intellectual disability, only to be blown away by his smarts (last summer, he read all the Harry Potter books by himself); the people who don't want him to try the same physical activities as other kids, because they think it's too "risky," etc. And that's probably kept me spending more of my time on disability work than on other things I might have moved to with full force.

I guess the thing I keep coming back to is how hard it is to get people to take disability rights seriously even today. People too often think of people with disabilities as complainers o wwhant everything to be changed around for them. What I wish folks would understand is that all human institutions and structures were built with a nondisabled population in mind. When people with disabilities ask for accommodations, they're just asking you to think about them, too.

As more buildings become accessible, and more people with disabilities get more advanced educations, these attitudes are going to change. Already, people without disabilities interact with people with disabilities in ordinary daily activities far more often than they did 20 years ago. And the ADA has undeniably helped things. I'm a old-time liberal, so I believe it's that kind of intergroup contact, working on common projects under conditions of relative equality, that's really going to change things. The law can help a little, and lawyers like me should try to make sure the law helps as much as it can. But in the end, it's a social revolution, not a legal one, that's going to end disablism in America.


Blogger Lady Bracknell said...

Excellent, thought-provoking post.

Thank you for taking part in BADD.

5:10 PM  
Blogger Sally said...

A good BADD post; the law may be different on your side of the atlantic to mine, but society, language and the built environment are the same. I took my employer to an Employment Tribunal, then worked briefly in employment law preparing cases, before I got too ill. Now I empower where I can. It is empowering to read of the lives of great people such as yourself.

8:10 AM  
Blogger imfunnytoo said...

Thank you for sharing the personal side of why you got 'into' disability rights...It gives those of us who stop by some good insight...

6:56 PM  
Blogger ravsterman said...

As a former student and disability rights activist, this answers all the questions I always wanted to know about Sam's life.

6:52 PM  

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