Monday, April 11, 2005

And the reverse- Pulitzer for most inept and offensive review...

should probably go to Charles Taylor's Newsday screed against Harriet McBryde Johnson's new book. Now, I haven't read the book, and for all I know, it's awful. But there's some serious presumption going on in this review. Where on earth does Taylor get off claiming that the author's understanding of her own disability is naive? "But even a polemicist needs logic to back up her passion, and Johnson simply is not a thinker."?! What the fuck? And how about this crazy paragraph:

The ugliness of Johnson's sensibility is common to ideologues of all stripes, the willingness to sacrifice people to dogma. Of the Lewis telethons, as grotesque as she claims they are, she says, "the money does some good, but the price is too high." Too high for what, her pride? What if you're one of the families with a disabled member who depends on MDA for financial aid? Should they refuse the money as a sign of solidarity? Have Johnson and the others protesting the telethons come up with alternative ways of funding?

First of all, objections to the telethon have nothing to do with "pride." The telethon depicts disabled people as objects of pity, as dependents, as charity cases, as permanent children. That's not just insulting: it's dangerous for people who have had to fight like hell for the right to live independently, to be educated, to hold jobs. I have a childhood friend who has mild cerebral palsy. When she started kindergarten, the school district said she couldn't attend a mainstream school and put her in a "special ed" class designed for kids with cognitive impairments. Her parents had to take the district to court to get her in a mainstream classroom aimed at kids of normal intelligence. Because she limped. If her parents hadn't had the money and wherewithall to sue the school district, or if she'd been more seriously or visibly disabled, she would never have had educational opportunities that Charles Taylor likely took for granted. She would have been sacrificed to the prejudices of a society that saw disabled people as not worth educating. The Jerry Lewis telethon reinforces the notion that disabled people need charity rather than opportunity. That's not trivial: disabled people, and the entire society, suffer because of that assumption.

It's likely that the hypothetical family dependent on telethon money actually exists, although Taylor doesn't provide any evidence that they do. And it's even possible that Johnson would expect the family to refuse the money as a gesture of solidarity, although Taylor certainly seems to be putting words in her mouth. But it's sort of stupid to claim that disability-rights advocates haven't come up with alternatives. DRAs spend their whole lives struggling to find ways to enable disabled people to live with dignity: it's kind of what they're all about. Johnson wants to change the society so it's set up to support all disabled people, including people with muscular dystrophy. Taylor, it seems, can only conceive of support for the disabled in terms of charity, so it seems cruel to take away the handouts on which some disabled people depend. But Johnson, I think, is arguing for a more robust theory of rights that would render charity unnecessary. Instead of demeaning handouts, purchased at the price of their dignity, disabled people should be entitled to the things they need to live full and meaningful lives. They shouldn't have to parade themselves on television or depict themselves as objects of pity to get that: it should be seen as their due, the same way social security or public education are seen as rights of citizenship. We would pay for that out of tax dollars, the way we pay for public schools and social security and other things that are necessary to have a just and decent society. It's really not all that complicated.

I understand some of Taylor's objections. I really do. It's reasonably likely that I'll go deaf sometime in the not-too-distant future, and I find the whole Deaf culture argument kind of not-useful in my particular case. I like hearing; I'm going to be profoundly bummed if I can't hear anymore; and I don't think I'll ever come to think of deafness as a different culture rather than a disability. I'll cope if I have to, but I don't want to have to, and I'm going to be peeved if someone suggests that being bummed is a failure on my part. It does sometimes seem like DRAs are a little condescending or judgmental towards those who haven't made peace with their disabilities, which is kind of shitty, since people are entitled to their messy emotions.

But you know, if it comes to that, Harriet McBryde Johnson is a lot more likely than Jerry Lewis or Charles Taylor are to help me fight for my rights to have a career and health insurance and access to public accomodation. And when push comes to shove, I much prefer the kind of condescension that suggests I should stop feeling sorry for myself and fight for my right to a normal life to the kind of condescension that tells me I'm an object of pity and treats me like a charity case. I don't need a movement to validate my feelings: I've got friends for that. It's heartening to me that there's a movement fighting to ensure that the society doesn't view my rights, my autonomy, my value as all contingent on my ability to hear. I'm willing to put up with a little annoyingness in the service of that goal. If that makes me an ideologue, I guess that's ok by me.

Thank you for covering this awful review! I haven't gotten to blogging about it yet, nor to reading Johnson's book though it should be in my mailbox any day now. Taylor rather proves Johnson's point about bigotry and ignorance, particularly with his interpretation of her views on Christopher Reeve, which, for good reason, are the views of many disabled people. Overnight Reeve became the world's most famous disabled person and used that spotlight to talk about a cure that does not yet exist. (His other most-remembered statement about his disability, btw, was that he thought of suicide. That "cure" or "die" are what mainstream media culled from his experience says much about society's perspective on disability.) When pressed by other disabled people to talk also, please, about more practical daily needs like curb cuts, Reeve stated that he didn't care about those. Years later, as many disabled people expected, Reeve found that, indeed, he would like some curb cuts too while he waited for that cure, but the damage had been done. To call Johnson's perspective on these events condescending is, well, condescending.

About the telethons. Yes, there are families who need money from those events, but the MDA sent out notices quite a few years back that a cure was so important and "close-at-hand" that funds were being diverted for that important work. The cure hasn't arrived, of course. In any case, I expect Johnson doesn't begrudge anyone telethon funds, but she objects to funds raised by demeaning disabled people as helpless and pitiful. The 9/11 telethons, for example, are a model of how fundraising can be accomplished without invoking pity for others.

Anyway, thanks for the thoughtful review.
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