I’ve been wondering what I could say about MDA and the telethon that I haven’t already said. I’ve been speaking out for years about the harm the Muscular Dystrophy Association has caused those of us with neuromuscular disabilities, but they just keep getting support. When I found out the telethon was ending, I felt relief. I thought it was the end of an era, and I believed that those of us who were used and abused by MDA would have the chance to heal. Unfortunately, the resurrection of the telethon is bringing up a lot of unpleasant memories. It’s not just resurrecting an outdated institution. It’s forcing survivors of MDAs abuse to relive that trauma.
MDA has chosen the worst time possible to bring back the MDA telethon. When they ended the telethon they said something along the lines of they knew better so they were going to do better. Do they really believe that resurrecting a harmful telethon during one of the most unprecedented times in our history is “doing better?” We are in a pandemic. People are unemployed or not working. People are struggling to survive and pay their bills. MDA has chosen this time to beg you for money? They know that we can’t get out and physically protest but that doesn’t mean that we’re going to remain silent.
I’m a survivor of trauma, and MDA is just one of the reasons for that. I keep having flashbacks to when I used to go live on television at one or two in the morning. It was always very slow at those hours. A lot of people were not up to donate money, so they always wanted me to get on camera and make a plea for donations. I was only 10 or 11, and I thought I was so grown up because I was up until early in the morning. I also thought it was so important because they wanted me, a nobody that nobody at school liked and I was picked on all the time, to do this “very important” task. MDA preyed on the fact that I didn’t have friends, felt unloved, and was a survivor of consistent oppression, discrimination, and mistreatment. That’s why I call it being pimped for profit. MDA only cared about us kids for how much they could use us. For how much money they could make
They loved when I would get on screen and make my plea because I was adorable, and the audience would respond. We would have the phones ringing off the hooks at 2 o’clock in the morning, all because I was begging the camera to let me have an adult life. I was begging them to cure me and fix me. I remember using words like, “can’t you please just donate to help make me just like everybody else?” They really loved having me talk about how I couldn’t jump or run and how all I wanted to do was just “play with the other kids.”
While I was doing all of this, I was crafting a narrative in my head that was taking all of these things I was saying and believing them wholeheartedly. By the time I was 12 I fully believed the only answer to make my life better was to cure me. It wasn’t until I was in my late teens/early 20s after I started using a wheelchair full-time that I started to realize that my life wasn’t that bad as a disabled person. It could be great with accommodation and inclusion, but getting those things seems impossible, and large part of messages like the one MDA is peddling.
Being disabled is not an easy existence, but I believe that a large part of that is lack of accommodation. That includes lack of accommodation to treatment options that can make your life better. Having less pain. Having more mobility. Those things can be helped with the right treatment options but that doesn’t mean you’re taking away our disability. That doesn’t mean you’re making us like nondisabled people. That doesn’t mean that we are fixed and suddenly SMA is gone or Duchenne is gone or CMT is gone.
I also would love to end the idea that if you are disabled physically something must be broken and need fixing. We are whole people. There is nothing wrong with us, and not giving us the same opportunities or access to an independent accessible life is the real tragedy. MDA has raised over $1 billion in the decades since it was formed. They could do so much good for people like me, and that would benefit the rest of the disability community. Instead, they continue to set disability and the disabled population back.
We have to #EndTheTelethon for good. The lives of those of us with neuromuscular disabilities depend on it. You can join our effort to end the telethon by posting your own blog post!
If you are disabled let us know about your experience with the MDA telethon or telethons in general. If you have a neuromuscular disability how has MDA affected you and how has the telethon harmed you and your peers?
If you have another disability that is not neuromuscular consider writing about someone with a neuromuscular disability whose work you admire, especially in relation to protesting this harmful and outdated telethon or write about how telethons in general harm all of us.
You can submit your blog post to us to share on social media here: