Bioethics, healthcare policy, and related issues.
There was some head-squeezin’ taking place over my recent claim that many disabled persons believe “life with a disability is no more to be denigrated than life without one”. It’s just obvious to many people that having a “disability” makes your life objectively worse than otherwise, and presumably makes you objectively less happy than you would be without the disability. (A particularly stark example of this took place in an infamous encounter between utilitarian ethicist Peter Singer and disability activist Harriet McBryde Johnson, who uses a wheelchair, in which he insisted – against her objections – that having a “disability” was simply objectively worse than having some mere life difficulty such as being a victim of prejudice. I have always wondered at this in Singer, who, though controversial, is not usually unempathetic – at least, he feels chickens’ pain pretty intensely.) Seeing the disabled as “the disabled” makes it very hard not to respond to them in a way that foregrounds both the disability (rather than the person) and the observer’s interpretation of its significance.
This is an especially strong intuition for progressives for whom “helping the needy” is both a natural inclination and an inherent good (implicitly requiring that “being needy” is less good than not having a need, whereby one is “helping” by removing the need). Yet many people with disabilities would deny both that disability is necessarily an objective harm and that it necessarily makes them unhappy. Simultaneously, they are accutely aware of what is difficult for them that is not for those who do not have their disability, and many seek whatever aid is available – including medical treatment – to lessen that difficulty. Grasping this dichotomy is an important part of bringing disability into the range of human norm, and “the disabled” into the community of caring that progressives seek to build.
It’s very hard to explicate, in a coherent way, the feelings and values that drive this complex of perspectives, but it is striking how often you hear sentiments such as the above from people with disabilities – and not just the more radical ones. Anyone who needs disabusing on this score should waste not a moment renting the film “Murderball” for a hard slap upside the head. Here’s one athlete (“murderball” is a viciously intense form of rugby played – yes – by quadriplegics in wheelchairs) – an intense, angry man – reflecting on his disability:
Consider Mark Zupan, probably the best player in the sport today. He was paralyzed when he was 18. He fell asleep in the bed of a pickup driven by his friend, Christopher Igoe, who drove away not realizing Mark was aboard. The truck crashed, Mark was thrown into a canal, and wasn’t found for 13 hours. It took them a long time, but he and Christopher are friendly again.
During a discussion after a festival screening of the movie, he was asked, “If you could, would you turn back the clock on that day?” You could have heard a pin drop as he answered: “No, I don’t think so. My injury has led me to opportunities and experiences and friendships I would never have had before. And it has taught me about myself.” He paused. “In some ways, it’s the best thing that ever happened to me.”
This is hard to believe, but from him, I believe it.
Believing that – not that accidents or disabilities are likely to be the best thing that ever happens to anyone, but that people can accept them as parts of life, with the good and bad that come with every major part of one’s life – believing what disabled people tell you about their own disabilities, believing their acceptance of themselves, is a necessary step for anyone who wants to understand what disability really is, and leave behind their insistence that the disabled see themselves through non-disabled eyes. A second step – one that still challenges me – is understanding what it means to want to ameliorate disability without denying oneself as disabled. “Imfunnytoo” at “Did I Miss Something” has this first-hand take on “living with disability” while also “wanting effective treatment”. It’s a nuanced, difficult, and expressive piece of work:
Those with disabilites often loathe Telethons and empty promises of “cures” whether by big pharma, NIH,faith healers, herbalists, etc etc.
Why? Because we’re busy with relationships, jobs, volunteer opportunities just as the able are. Many in the disability community don’t spend a bunch of time waiting for a cure We’re doing instead….Pining by the phone waiting for a cure, or foccussing soley on cure rather than quality of life does a disservice to the doctors, the scientists, potential patients and caregivers. Also, many of us figure we’re just fine the way we are thanks. (The most recent X-Men movie is a good illustration of the “different is fine” idea.)
That doesn’t mean that if solid science says that there are some promising leads in Stem Cell Research, that solid science shouldn’t be allowed to run its course and perhaps find things that will dramatically change many Americans lives for the better. In other words, we’re not going to sit at the side of the road and beg for alms, but if medical advances can and do eventually help many of us, that’s a great thing.
The President has said no. That was a mind blowingly dismissive move towards science and towards advancement. His base loves it, but it’s just plain nuts. Far be it from our President to use some common sense. About anything.
But, the people that write and report on the Stem Cell Debate who are for the research have also made a mistake. And I dunno about others with impairments, but this disabled person would please ask those who support Stem Cell research to stop intensifying and reinforcing the “poor tragic people” stereotype. The mother heartbroken because her child won’t be “cured” will still love them as they are. The awfulness of being in a wheelchair and what a “tragedy” that is. (Ask the guys in the movie “Murderball” if they are feeling “tragic” today. ) Before the potential benefits for Stem Cells were discovered we were going about business as usual and we will continue to do so.
Please oppose Mr. Bush on the clear merits of the science involved and the specific condtions we hope it might help. Don’t use stereotypical images of the disabled to make your point, images that make it harder for us to be judged on “who we are” not our impairments. The “tragic” frame tells us we’re victims first. We’re not.
[I copied both quotes above before realizing that the latter one references the former - I swear! Hmmm . . . maybe it's time for a second good documentary about scary-looking, un-self-pitying quadriplegic asskickers.]
“Imfunny” says it as clearly as I have ever seen it: removing the hassles caused by “disability” conditions would improve the quality of people’s lives - just as removing hassles would improve the quality of any of our lives. But that’s not to say that a life with disability-caused hassles is a bad life, any more than any normal human life is bad simply because it could be better. Seeing disability as inconvenience – serious inconvenience, often, but, importantly, defined as an interference with life plans and projects, not some inherent quality of the person themselves – puts the focus where it should be, on the issues people face in their lives, and not on categorizing people (“normal”, “not normal”) in order to decide how to feel about them. The latter is not merely condescending and insulting, it’s counterproductive to working on the real issue – making life easier, not “curing” the “disability”. And, again, realizing that those two are not synonymous is the first step.
Hat tip: Ampersand at Alas, a Blog
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