Wolinsky, now 43, has spinal muscular atrophy, and was attending Rotary Sunshine Camp in Rush, New York, a free summer camp for kids with neuromuscular disabilities sponsored by the Muscular Dystrophy Association.
Wolinsky went to MDA camp for most of her childhood and loved it. It also showcased kids with neuromuscular disabilities. Other children with neuromuscular disabilities were also featured in filmed footage that would air on the telethon, which Wolinsky said was sourced from MDA camps.
So, one day, they organized a boycott. We ran away from the cameras. The cameramen were really upset and were trying to guilt us into doing stuff. But we were openly shutting them down left and right.
Last weekend, the MDA brought the telethon back for the first time in six years. The news last September that the MDA would be bringing its telethon back incited major backlash in the disability community.
Many disabled people had long criticized the Lewis-era telethon for its demeaning and pitying portrayals of kids with neuromuscular disabilities.
Two weeks ago, Dominick Evans, a filmmaker, movie and TV consultant, disabled activist and former MDA poster child, organized a protest on Twitter against the upcoming revamped fundraiser with the hashtag EndTheTelethon. Disabled people used the hashtag to express their distrust of the MDA and share stories about how the old telethon negatively affected their lives. As someone who lives with Muscular Dystrophy, the MDA Telethon has caused a lot of damage to disabled folks for decades!
Parading us as hopeless, helpless, and in need of a cure In , MDAorg chose me as one of the inaugural members of a Community Advisory Committee to help them fix their ableist, harmful model of charity. They scheduled ONE meeting with us and, after hearing our input, cancelled the Committee altogether. I remember being a young kid, maybe years old, and going on live TV in front of thousands of people. I remember by parents saying on TV that I was 'dying' - and I remember how painful that was because that was honestly news to me.
I remember my parents forcing me to watch the MDA telethon as a kid and feeling a little sick inside. MDA is bringing back the telethon, in the middle of a pandemic, an economic crash, and the most fraught election of our lifetimes. Read the room, MDA. By then, I realized I was trying to push back against the Telethon's pitiful message that I couldn't do anything.
Politely pushing back was an everyday thing. After that, Lewis was named the organization's National chairman, a voluntary position he would hold for 55 years.
It became a weekend-long Labor Day telethon in , usually kicking off Sunday night and running into Monday afternoon. And it was thrilling to watch the numbers on the tote board ring up like a slot-machine jackpot as money poured in for the cause so near and dear to Lewis' heart. It became a personal endurance test for Lewis, who never said why he was so involved.
He usually ended the event by singing You'll Never Walk Alone. Each year, Lewis would dominate the show, delivering a blend of showbiz schmaltz, and true-life, touching stories of people who had muscular dystrophy and their families.
Whether you liked it or cringed, it was live television at its most live, with Lewis getting more cranky and teary as the hours rolled by, pleading with viewers to make the numbers on the tote board increase. But the longer it lasted, the more controversy dogged the telethon.
People who had muscular dystrophy -- a group of diseases that cause muscles to progressively weaken - and their advocates objected to Lewis treating those with the disease as pathetic victims. Critics questioned how the Muscular Dystrophy Association was spending the money raised from the telethons. Mike Ervin, a disability rights activist, recently noted that , as a person with muscular dystrophy, he's relieved that this Labor Day will be telethon-free.
The Labor Day Telethon, Ervin writes, presented "a damaging narrative that depicted disabled people as nothing more than helpless victims.
It implied that as long as we remain disabled, we have nothing to offer or contribute, that our only hope was a cure By pandering to pity, the telethon nurtured the very stigma of helplessness in which disability discrimination is rooted.
Now that it's gone, here's a look back at some telethon facts and figures:.
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