Transcontinental Disability Choir: We're not looking for Pity: The Trouble With Poster Children
Gosh, did you hear? Earlier this year, Jerry Lewis received a humanitarian award for all the awesome work he's done, presenting children with muscular dystrophy as objects to be pitied, who will never work or have jobs! Because only children have muscular dystrophy, and gosh darn it, they all want and need a cure! Isn't it great?
I am just so proud that the Academy Awards gave the man who said "if you don't want to be pitied for being a cripple in a wheelchair, don't come out of the house" a humanitarian award for being so good and giving to those wretched disabled children! I do hope that everyone gives money to a man who said "You might as well put a gun in your mouth" after you find out you have amyotrophic lateral sclerosis (that's ALS- Lou Gehrig's Disease). And heaven knows that money goes to really important stuff - like a CURE! - because things like wheelchairs and accessible transportation and helping families get their homes renovated to be fully accessible would be a total waste of that money, right? Why help people with disabilities now when in the future, they may have a CURE!
Okay, I'll cut the sarcastic tone for a bit. I think I've made my point of view clear.
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.
The annual Jerry Lewis Labour Day Telethon in the US has been the subject of protests since 1991 from people with Muscular Dystrophy and other disabilities. This culminated in The Trouble With Jerry, a protest held over the weekend of the Academy Awards this year, when Lewis received his Humanitarian Award. Although they had sent letters and petitions to the Academy, laying out their issues with both the telethon and with Lewis' known bigotry against people with disabilities, women, and gays, they got this response:
It's perfectly fair for any of us to retain reservations about those individuals whom we see the world lavishing praise on. Heroes are rarely perfect in every respect, and none of us has an obligation to pretend that we see only their heroic qualities. At the same time, our awareness of some scratches in the paint job shouldn't lead us to dismiss the virtues of a Lamborghini.
Because how dare people with disabilities want to have their concerns about how they're presented every year be taken seriously? It's really just complaints about paint jobs, rather than something that affects us every day, in how we are perceived and treated by the general public.
Of course, 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" [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.)
Autism Speaks is notable for not having a single person with Autism on their Board of Directors. Every time they release another campaign, like the one where a parent with an autistic child described wanting to kill her daughter and herself while her daughter was in the room, people with Autism launch another protest. Being that Yoko Ono was supporting Autism Speaks earlier this year, you can see how effective the protests of actual autistics have been. But gosh, Autism sure sounds scary! I hope they continue to try and find a genetic test for it, so that no children with autism will ever be born!
The voices of actual people with Autism, just like the voices of many adults with Muscular Dystrophy, are ignored by these scary scary pity parties because it makes it harder to bring in money. Showing adults that "only" need help with things like paying for attendants so they can live their lives, or for computer software that will make it easier for them to communicate, isn't nearly as effective as a crying mother who just wants her daughter - who has a graduate degree, but also has muscular dystrophy - to be able to pick up a phone.
These campaigns have money. The Labour Day Telethon has been running for decades, with hours and hours of television time. Autism Speaks has the ear of celebrities and access to award-winning directors. They could be presenting people with disabilities in a variety of situations, showing how various needs can be met through accommodations. They could show people with disabilities living their lives, both the difficulties and the triumphs, and how necessary things like accessible housing, part-time work schemes, affordable transport, drug plans that work, amongst many others, are.
Instead, these campaigns reinforce the idea, as presented by Jerry Lewis himself, that people with disabilities are "half a person", that they shouldn't have a voice in their own campaigns - that they can't have a voice that's louder than "thank you for your nice support" That people with disabilities should be grateful for what they're given, because otherwise their lives would continue to be pitiable and pathetic. That people with disabilities are all children, because having a disability is a death sentence.
There are actual campaigns run by people with disabilities that need support, both financially and in volunteer hours. I don't want to link any here, because the readership is international, and because I have not vetted any charities that I do not directly benefit from.
We don't want your pity. We don't want to be shown as objects of pity. We want to be treated like human beings.
Don't support Poster Children Campaigns for disability. Support actual people with disabilities.
The Kids are All Right is a half-hour documentary about a renegade Jerry's Kid named Mike Ervin. A Muscular Dystrophy Association poster child in the 1960s, today Mike is an outspoken disability rights activist who challenges the MDA 's representation of people with disabilities in its Labor Day telethon through his activist group, Jerry's Orphans. [Available online, subtitled] Watch while they try and stop protesters by putting a bunch of chairs in the hallway, since the protesters are wheelchair users.
From Poster Child to Protester, by Laura Hershey.
Protest Pity [WARNING: comments have become filled with spam] is the 2007 Blogswarm against the Telethon
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