Tuesday, October 12, 2004

I've been trying to get my thoughts together to write something about Christopher Reeve, and I'm having trouble doing it. I think that's because the controversy around him has made me focus on my still-unresolved issues about my own health status, and I'm afraid that's what this post may end up being about. So if this seems offensively solipsistic, I apologize.

As I think I've mentioned here before, one of my friends has cerebral palsy, and she's kind of tangentially involved in the disability rights movement. I knew through her that Reeve was a controversial figure in that world, and since the discussion of him since his death has been universally lauditory, I was curious and thought I'd do some googling. I found a couple of articles in disability rights publications, and it seems that there are two related aspects of his public life that rile disability rights folks.

The first is the way he talked about his disability. Disabled people have to contend with a particularly demeaning set of assumptions about their lives: that they are dependent and unproductive, that their lives are without dignity, that they might be better off dead or having never been born at all. In a lot of ways, Reeve reinforced rather than challenged these assumptions. Disability rights advocates argue that with reasonable accomodations, disabled people can live full and productive lives. At least at first, Reeve derided this position. He was defective and dependent, he said. His disabled life wasn't worth living, and after his accident he wanted to die. What kept him going and gave his life meaning was his faith that one day he would be cured. For people who don't expect to be cured, this is a pretty insulting and defeatist message.

Which gets back to me. Most people with the Very Rare Condition eventually go deaf. I don't have a typical case of the Very Rare Condition, and my doctors have told me they have no idea whether I'll lose my hearing or not. But I have to contend with the possibility that it could happen. I've sat down and tried to figure out what my life would look like if I couldn't hear, and I've decided that I could deal with it. Still, the idea totally terrifies me. Between 10 and 20% of people with the Very Rare Condition develop life-threatening heart-related complications, but that's not the thing that keeps me up nights. Maybe it's just that it's easier to contend with worry about deafness than with worry about dying, but when I wake up in the morning, I breathe a sigh of relief that I can hear my alarm, not that my heart is still beating.

So anyway, the capital-D Deaf community is one of the more militant and organized parts of the disability rights crowd. In fact, they deny that Deafness is a disability. Instead, they say it's a culture. Sign language is a language like English or Spanish, and the Deaf community is a group of people who happen to speak sign language, rather than the dominant language. Given access to the Deaf community, Deaf people can fully participate in every aspect of life. I think that perspective has a lot of merit, and I mean no disrespect to it when I say that I'm scared shitless of going deaf. But I am. If I'd been born deaf and raised in a Deaf community, it would be one thing. But I've lived my whole life in a hearing world, and losing my hearing would make it difficult to continue living the life I've made for myself. What would it mean for my relationships with my friends and family? What would it mean for my career? Would I have to start over again, in an entirely new language with entirely new people, at this late date? Am I even capable of doing that?

I think of adult-onset deafness as being akin to being a refugee, an involuntary exile from the land of the hearing. I think that's because it's an encouraging metaphor for me: my grandparents were refugees, they had to start over in a new language when they were around the age I am now, and they managed it, despite facing a lot of challenges that easily eclipse anything confronting me. But I think most refugees feel a certain nostalgia for their old homes, or at least for the ease of living in a culture that's fully comfortable. That doesn't imply any disrespect for their new country; it's just not home. If I go deaf, I think I'll always be homesick. I assume that Christopher Reeve, having lost the ability to do a lot more than hear, felt homesick for his old life, too.

So I guess I have some sympathy for Reeve's impolitic understanding of his own disability. He had a particular life, and then he lost access to it. He was used to living in a certain way, and then he couldn't live that way anymore. I think it's a little unreasonable to blame him for mourning the life he'd lost. I think it's a little unreasonable to get angry at him for wanting it back. You can't really expect people to react to their major life events according to a particular script. He felt what he felt, and I don't think he should have been expected to censor his real reactions.

Which leads to the second area of controversy. The issue isn't just that Reeve understood his disability in a problematic way. It isn't even that, as the most visible seriously disabled person in the world, he was able to publicize his attitudes towards his disability in ways that no other disabled person could. It's that his celebrity gave him considerable political clout, and he used that clout to push funding priorities that didn't necessarily benefit most disabled people. He insisted that the priority should be finding a cure for spinal cord injuries, rather than funding accomodations that would allow disabled people access to jobs and whatnot. To him, disabled people who focused on accomodations had "given up" on the real goal: a cure that would make them whole again. But most disabled people don't have spinal cord injuries, and the research Reeve supported wouldn't cure everyone. And it was easy for Reeve to dismiss state-sponsored or mandated accomodations, since his considerable personal resources meant that he could often provide his own. To his credit, Reeve did eventually realize that accomodations were necessary in the short term. But he lobbied the American and other governments to focus on a cure, and because he was famous and charismatic, governments listened to him. Research on spinal cord injuries is now better funded than research on a lot of more common debilitating conditions (and because this is a solipsistic post, I will point out that this includes autoimmune diseases, which do not have the benefit of a big-name celebrity advocate who can argue for research dollars.)

The thing is, I'm not sure I blame Reeve for that, either. It's hard to fault someone for wanting his own problems to be addressed. The fault, I think, lies with a culture that values celebrity so much that governments actually allow movie stars to dictate how it spends taxpayer dollars.

So anyway, standard disclaimer: the disability rights stuff is new terrain for me, and I apologize if I've got it wrong, spoke out of turn, or otherwise caused offense. Feel free to set me straight in the comments!

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