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When my nephew, my sister's youngest boy, was diagnosed with Duchenne's Muscular Dystrophy, I started paying attention to Jerry Lewis and his 'kids.' This was, of course, after wailing and weeping and rending my garments. I think that it might be the third stage of terminal illness/disability grief: looking for famous examples of said illness/disability and/or advocacy thereof. I looked to Jerry, because his telethons were all I knew of muscular dystrophy.
That was a mistake.
The telethons are uniformly upsetting to anyone who loves a child with muscular dystrophy (and, presumably, any person with muscular dystrophy or any related or comparable condition): as Anna Palindrome pointed out in Bitch magazine last week, Jerry treats his 'kids' like helpless, gibbled waifs whose only hope in life is to have bigger, stronger people pity them and maybe toss a few coins their way. This has provoked nearly two decades of protests from groups representing persons with disabilities, but such protests have fallen on deaf ears: why would anyone protest Jerry? Who does such good? For the kids? When protesters turned their attention this year to the Academy of Motion Picture Arts and Sciences, who were honoring Jerry Lewis for his humanitarianism, the Academy brushed them off: Jerry, after all, is a hero. What would these kids do without him?
Well, they'd retain some dignity, for starters. From Anna Palindrome:
"Telethons and donation drives raise a lot of money, and the best way they do that is by showing the general public an image that will invoke either pity or outrage. Pity is often easier, so over and over, in an effort to raise funds to "help" people with disabilities, the worst, saddest, most pathetic images one can come up with are shown. In the end, this "help" leads to the final image in people's heads: having a disability is horrible, pathetic, and sad, and we should all feel nothing but pity for people trapped in the prison of their own body."
My nephew, Tanner's, life is spent battling this image. He's barely ten years old, and he's spent more than half his life struggling to be seen as just a regular kid, a kid who has some challenges, for sure, but a kid who is not defined by those challenges. But he has muscular dystrophy and he's in a wheelchair and he's dying and since preschool, basically, every kid and parent and teacher who has met him, with very exceptions, has treated him as sick and pitiable. This would probably happen, to some extent, without Jerry's telethons and other media that present persons with disabilities as pitiable, but those things certainly make it worse.
And, as Anna Palindrome points out, it's not just Jerry and muscular dystrophy:
"The Jerry Lewis Telethon isn't the only regular event that reminds people that Disability = Bad/Horrible/Awful/Pity. We can't forget the campaigns by Autism Speaks, an organisation supported by Lindt Chocolate and Alfonso Cuaron, amongst many other famous names. They produce videos like "I am Autism" (the video can be seen at the Bitch site, where you can also find a link to the transcript) ... In summary: Autism is horrible and scary and bad but all these people who don't have autism are coming together and they'll fight it! They'll make it all better! They have a VOICE! (Not heard: actual people with autism.)"
Programs to help persons with autism or with muscular dystrophy or any other disability or condition are great inasmuch as they serve that purpose: getting help to people who need it. Yes, funding research into muscular dystrophy is important: my nephew will die from Duchenne's, but hopefully, someday, there'll be treatment that will prevent other boys from dying. In the meantime, however, Tanner needs support in maintaining quality of life. He needs support so that he can try to live out his life, so far as possible, comfortably and enjoyably and not - NOT - as a pitiable freak. Getting funds to support swim therapy isn't as sexy as SAVING HIS LIFE WITH A CURE or PUTTING AN END TO MUSCULAR DYSTROPHY, but it matters more to his daily life. And to the extent that shock-and-awe campaigns put all of the attention on POOR POOR DYING KIDS LIKE TANNER who will NEVER WALK AGAIN and who NEED OUR HELP because they are HELPLESS and OH GOD aren't you THANKFUL that YOUR kids aren't like Tanner??? These just hurt him, and everybody who loves him.
(Those of you who
