Why I don’t support the MDA telethon

If you’re new here, I have a type of congenital muscular dystrophy. Muscular dystrophy is, in simple terms, a category of neuromuscular diseases. I personally don’t know which exact flavor of MD I have, since I’ve never been tested beyond my initial diagnosis I got as a baby. But for the purposes of this post, all you need to know is that I’m under the muscular dystrophy umbrella.

For a long time, the MDA telethon hosted by Jerry Lewis was a big deal. Every labor day weekend, it would take over the TV for what felt like an eternity while disabled kids and their crying parents were showcased. The telethon was quite literally designed to make you so sad you’d call in and send money. And they raked in millions. I haven’t thought about the telethon in years, but was super bummed to see that apparently… it’s making a comeback with Kevin Hart.

Here’s why that really sucks.

The telethon, like I mentioned, makes its money by basically throwing a huge pity party. I was on the telethon when I was a baby, so I don’t remember actually being filmed. I did a few other MDA poster child things, because I was a cute kid, but thankfully I don’t actually have any memories from any of that. My mom, on the other hand, remembers. Specifically, she remembers the crew making her cry right before turning the cameras on. That’s the goal. ‘Look at these kids, their life sucks. Maybe they’ll even die young, let’s cry while writing a check.’

I spend so much of my life trying to call out ableism and show how harmful it is. For years, the MDA telethon was a MASSIVE perpetrator of the kind of ableism that made growing up disabled incredibly difficult and lonely for me. You might think I sound bitter or that I’m exaggerating, but Jerry Lewis did not hide or sugarcoat how he felt about the disabled kids he claimed to advocate for. He even called us ‘Jerry’s kids’ (which is creepy and weird) but he absolutely wasn’t looking out for us.

His opinions were so aggressively ableist that a group of activists formed ‘Jerry’s Orphans’ to protest the telethon.

He didn’t shy away from using the term ‘cripple’. I, as someone with a physical disability, only ever feel comfortable reclaiming that word when referring to myself. As the host of a program about and for disabled people, he absolutely should not have been using that kind of language. It gets worse, though. He once wrote a fake essay from the perspective of a disabled child as he imagined it would be. It’s unbelievably gross. Here’s just a snippet:

“I know the courage it takes to get on the court with other cripples and play wheelchair basketball. I’d like to play basketball like normal, healthy, vital, energetic people. I just can’t half-do anything. Either it’s all the way or forget it.

When I sit back and think a little more rationally, I realize my life is half, so I must learn to do things halfway. I just have to learn to try to be good at being half a person. I may be a full human being in my heart and soul, yet I am still half a person.”

That paints a pretty clear picture of how he felt about us MDA kids, and the fact that he was the host is incredibly messed up. That’s the guy who was ‘spreading awareness’ for kids like me. No wonder I had to listen to so much ableism growing up. I don’t live a half life. I am not half a person.

Disability isn’t the opposite of humanity, but unfortunately there are people like Jerry Lewis who believe otherwise.

And this isn’t just some harmless difference of opinion that you roll your eyes at and move on from. This kind of crap hurts us, and not just our feelings.

When it’s a mainstream belief that people in wheelchairs are only half humans, it’s easier to avoid hiring disabled people for well paying jobs. Or to allow subminimum wages. It makes dating a nightmare and forget about marriage equality. Accessibility is an afterthought, because disabled people are often afterthoughts.

Kevin Hart will be hosting this year, and I’m not thrilled about that choice either. He’s been known to be homophobic, both before and after issuing an apology for his homophobia. He was also in that movie with Bryan Cranston (who played a disabled man) that pissed me off enough to write about it. And while I don’t know how ableist his hosting will or won’t be, I know he isn’t one of us. That alone is enough for me to not trust it.

So alright, the telethon is ableist and gross in it’s presentation – but is it at least accomplishing something good?

Well, not really.

The MDA itself is problematic at best. I’ll be fair and say that they have helped my family a few times. They’ve helped with a few small repairs (and I mean SMALL). When we were little they helped us get “cheaper” (not cheap, but in comparison to my current wheelchair) equipment like walkers/braces. After my last wheelchair died, I was able to borrow a loaner chair from one of their warehouses. But the help that they do provide is drastically less than they used to.

In the past, they offered a lot more help with providing durable medical equipment. But a long time ago, I don’t know when exactly but I believe it was sometime in the 90’s, they cut it down to $500 a year. My newest chair was around $30,000. So, $500 is basically nothing. It’s even kind of insulting. I kind of look at them as like a last resort option, and not one that you can rely on by itself. If all you’ve got is help from MDA, you’re probably not going to get very far. Especially if you’re an adult.

They love to focus on children, largely ignoring all of the adults who are living with neuromuscular diseases. A lot of us who are, let’s face it, living in poverty and struggling in any number of ways. That stings even more when you consider that the CEO of MDA makes over $500,000 every year, so y’know. At least they’re set. The MDA actually gets a failing grade when it comes to their financial info according to Charity Navigator with a score of 63.78.

Most of their money is directed to ‘searching for a cure’.

Now, I don’t sit around longing for a cure. I think it’s fine and totally valid if anyone wants one, but I honestly feel like it’s a waste of time (for me) to spend all my time waiting and donating money to get a cure for my disease. I’m 28. I’ve long ago accepted that there’s no cure coming for me. If there is, by some wild chance, a cure – it’ll be so unbelievably expensive it’ll be out of reach for those who are too poor to pay and can’t get insurance to cover it.

That’s why I believe it makes more sense to provide support for people who are living with a neuromuscular disease day to day. Help with getting treatments, accessible housing, caregivers, equipment, job placement services, transportation, etc. These kinds of things would drastically change the lives of people living with muscular dystrophy way more than the decades of research that have accomplished nothing. At the end of the day, the people who the MDA is supposedly designed to support see very little of that money in any meaningful way.

The fact is this – the telethon is going to harm those of us who have neuromuscular diseases.

My heart breaks thinking about the new generation of kids who are going to be sucked into this damaging cycle again. There isn’t a single day that I don’t scroll past ableism on my timeline. Not one day. Ableism is so ingrained in our society. The last thing we need is a massive, powerful, and well regarded charity broadcasting a pity party for disabled kids to millions under the guise of a good cause. It only serves to undermine the hard work that disabled activists have been doing for years.

I will not be supporting the 2020 MDA telethon, and I hope that you won’t either. There are much better ways to help those with neuromuscular diseases that don’t involve devaluing their lives in the process.


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