This Is All You Need To Know About This Year’s MDA Telethon

Posted by – September 6, 2010

Lots of people are, as always, posting about the MDA Telethon this Labor Day weekend (I recommend this piece by Laura Hershey). Usually the focus is on smashing the negative images (pity) that the MDA Telethon often conveys, and that is crucial because the Telethon brings to all corners of the U.S. the most-watched images of disability all year. But I usually focus on the help the MDA does and doesn’t provide, and how misleading the Telethon is about what they do for us “Jerry’s Kids.”

Jerry Lewis has taken a lot of heat for years over comments like “My kids cannot go into the workplace. There’s nothing they can do.” But I’m more concerned with WHY we can’t get into the workplace than with the negative comment itself. We stay at over double the general population’s unemployment rate not just because of “attitudinal barriers” (pity, seeing us as “less than,” and as charity cases, views the Telethon definitely perpetuates) but because we so often don’t have access to education, transportation, and the assistive technology that we need to succeed. Like wheelchairs.

The MDA sent out a letter to recipients last Fall, notifying us of major nationwide changes for fiscal year 2010: they will no longer help buy wheelchairs for “Jerry’s Kids.”

page 1 of scanned Letter from the MDA

page 2 of scanned Letter from the MDA
This scanned letter, passed to me by a concerned mom of kids with Duchenne’s, is not publicly available on the MDA web site, nor mentioned during the Telethon. I can only hope they don’t continue saying they provide wheelchairs on the Telethon.

The needs of those with MD are being met less and less by the MDA, and less and less by the state, cutting back brutally now thanks to the Great Recession. Now, future “Jerry’s Kids” will never again get a wheelchair with help from the MDA. Please look at these posts from the MDA forums about the changes, and MDA’s response.

I get no help whatsoever from the MDA, no matter how hard I have tried to work with them. The NYU MDA clinic essentially turned me away this year, the clinic director telling me “we don’t do metabolic disease” (nevermind that it was the Mobile, AL MDA clinic that diagnosed me with mitochondrial myopathy when I was a small child, and that their national goodwill ambassador Mattie Stepanek had it). Then, in a classy move, they referred me to a nonexistent “metabolic clinic” that when we called, said there is no such clinic. I’m totally open to discussion with MDA if they want to make this right, I would meet with an MDA representative if given the chance; but I’m not optimistic; their emphasis is simply NOT on those of us who’ve managed to survive into adulthood.

The charity model isn’t all bad; it can make a big difference in the lives of people with disabilities. Just look at the Islamic world, where people with disabilities often are getting more help (both physical and monetary) from their mosque than what we get from Medicaid! I got my first wheelchair from New Orleans MDA. But the MDA is really no longer a service charity, it’s research research research, cure cure cure, cures we’re told on the Telethon are only 5-10 years away but 20 years later are nowhere to be found.

A real charitable organization could make a huge difference in our lives, filling the enormous gaps we fall into every day, an understanding voice that could give hope for better quality of life after yet another Medicaid rejection of services. These diseases are no easy path. I REALLY NEED THE HELP! Just a shoulder to lean on and a little coordination would go a long way. But MDA is not that charitable organization, and it takes up so much “market space,” no competing nonprofit can gain the traction to provide this desperately needed assistance. That is my beef with the MDA, and I wish the discussion among disability rights circles was more in this direction.

Nick

See also, my blog about last year’s Telethon, focusing on dismantling misleading claims made on the Telethon.

  • You pretty much summed up my thoughts on the telethon completely man. Very eloquently written!

  • Pingback: Last Word on the MDA Telethon (at least for this year) – Laura Hershey: Writer, Poet, Activist, Consultant()

  • Dumdum18

    Very true agree entirely. You make complete sense and I'm sorry MDA has been no help for you in a long time. I feel so bad for all the crap you've been through. Stay strong my friend. I know a few people with duchenne who live in india, medical insurance or anything else will not lift one finger to even assist in buying a wheelchair. They can't even be friends with a girl, to not be seen. Not even get any care other than by family. Not allowed to fall in love, have a job, or even a family of own. Only escape is the computer & internet, a lot like us. 🙂

  • Captaingeary

    Nick, your words “I get no help whatsoever from the MDA, no matter how hard I have tried to work with them.” are EXACTLY our words as well. VERY well spoken. My son has Duchenne's and we have received NOTHING from the MDA. Oh yeah they have a Christmas party, we need help with a wheelchair lift/wheelchair anything. The SHRINERS have really helped my son but they are not seeking recognition for it. Now I am getting emails from the MDA wanting money from us–for what??? I totally agree with your words. Keep fighting for yourself because it feels like nobody else will, Steve

  • Steve:

    Thanks so much for a great response. Hope you and your son fare better than I have. And I hope you’ll keep reading the blog and will gain info and insight; I hope I can help in at least that way.

  • Steve:

    Thanks so much for commenting. I hope your son fares better than I did. And I hope you keep reading the blog and gain info and insights that are somehow be helpful with the journey.

    Nick

  • Guest

    I can totally understand what you're saying about MDA taking up all the market space. The same problem exists with Autism Speaks. Like MDA, they definitely do NOT represent the reality, and they don't focus on what folks really want and need in the way of supports. Doesn't matter, they still get all the air time anyway (look into the Jerry's connections within the media and you'll understand why). So, now the general public thinks that Autism Speaks actually speaks for those with autism, while people who know better wish they'd shut up, but can't get a word in edgewise.

    Thanks also, for steering the conversation toward helping all those people who “mean well” to understand that the voluntary charity model cannot and never has met the need.

  • Captaingeary

    AMEN ! ! ! ! The MDA does almost NOTHING for people with MD. My name is Steve Geary, on our 4th wheelchair, MDA has not helped at all, not $.01 end of story. My phone number is 352-302-3098, I am real and we really could use some help. When we go to the “FREE MDA CLINIC”, they require my insurance card…..