I feel the need to majorly preface everything I’m going to write about here….
Some of my favorite memories from growing up were at MDA Camp. From probably 8ish years old right on through high school, it was always the best week of summer. Occasionally I wake up in the morning now and realize that I was back at Waskowitz in a dream. I could still find my way easily around the entire camp with my eyes closed.
It’s hard to find the words to describe the magic of Camp… It felt like stepping into another entire world for a week. We didn’t have mobile devices back then, or anything connecting us to home, family, friends, or even what was going on in the world. It felt incredible, almost cleansing, to just walk away from everything and slip into another universe. The rules were different at Camp. There were hardly any adults to be found; most of the “adults” were actually teenagers, or young 20-somethings at the most.
Social life happened at hyper-speed. A total stranger on Sunday would be your best friend forever by Tuesday. Couples would get together and break up and get back together. (Some are still together now!) It took no time at all to go from zero to total emotional intimacy. (Probably other types of intimacy too, but I was a child; people didn’t tell me these things.:)) Totally normal to tell your brand new friends the deeply guarded secrets you’ve never talked about with anyone before. It felt so…. safe. We could be a bunch of awkward, crazy, uninhibited weirdos, and just expect to be loved and accepted by everyone else, since they were also busy being awkward, crazy, uninhibited weirdos.
Endless memories of pranks, swimming, dances, talent shows, crafts, underwear raids, The Coats, the awful food, spirit chants, pizza night, sleeping out by the river, sing alongs, riding Harleys, King Limbo, secret messages in the newsletter, snack shack goodies, and just hanging out by the pool… I think that more than anything, when I’d go back home and have to adjust to reality again, I missed being able to go hang out by the pool any time of day and be surrounded by friends and whatever was happening. It was like a mega-Central Perk.
Ok, so now that it’s hopefully very clear that MDA Camp holds a priceless place in my heart….
Let me tell you about my Labor Day weekends growing up… (This is going to be hard to write.)
Labor Day weekend meant the Jerry Lewis MDA Telethon. It ran from 1966-2014, and evolved very little in all that time. For almost 24 straight hours, I’d listen to all these people in fancy clothes talking about Jerry’s Kids. Until very recent years, there was no acknowledgment that people with muscular dystrophy ever grew into adults. Kids are cuter, better at eliciting sympathy and opening checkbooks. Also, keeping the adults out of sight helped encourage the narrative that we were all knocking at death’s door.
It was the only weekend of the year when I’d have to think about life expectancy. No kid knows what to do with thoughts about life expectancy! But people on tv kept talking about it, so I had to think about it. And it was confusing. I knew that the doctors had told my parents I wouldn’t live past age 5, and I’d already outlived that, but all my other MD friends seemed to have the same story, so I just figured doctors were dumb. I didn’t feel like I was dying. Was I dying? Was my brother dying? Were we all dying? Technically, isn’t everybody dying? Was I more dying than other people? What kind of a stupid word was “terminal” anyway? (I developed a Pavlovian eye-roll to the word as a child, and it doesn’t serve me well as an adult. You’re not supposed to roll your eyes when people tell you about their loved one’s terminal diagnosis! I have to very consciously repress the urge.)
A portion of local telethon time was usually devoted to a tribute to somebody I knew from MDA Camp that had passed away within the last year. So, yeah, I guessed we were dying…
But wait! We didn’t have to die! Because if people called in with donations, scientists could find a cure! The cure was right around the corner! They’d talk so excitedly and confidently about it. Again, I was confused. Was there really going to be a cure? Did I need a cure? Should I be excited about this? I’d look to my parents and ask, “Do you think there’s really going to be a cure?” They’d look at each other with that “You answer this one; no, you!” look that parents give. That’s all I needed. I knew that meant the cure talk was a lot of hot air. And if they were exaggerating when they talked about cures, then they were probably exaggerating when they talked about dying too. I decided none of it was worth thinking about…. I had to come to this decision anew every year.
Some years my family attended and appeared live on the local segments, and other years we stayed home. Staying home wasn’t an escape, though. They came out to my house two or three times throughout my childhood, made a video about my family, and then played it over and over, telethon after telethon. They played clips of my brother and I answering questions about our favorite part of Camp. They showed our parents crying about the day we were diagnosed. They showed us being cared for, taking off braces and being carried around in our underwear. (We have laws to protect non-disabled kids from that kind of exploitation, right?) They showed us playing with our dog in the backyard, while sappy music made it seem more “touching” than every other kid in America playing with their dog in their backyard.
I hated it more than I can express now, and exponentially more than I could express then. I was a shy child, a rule-follower, a people-pleaser. I didn’t know how to speak up and advocate for myself; I was just doing what I was asked to do, what I was supposed to do. I didn’t know that my own feelings were a factor that should have been considered. I didn’t know how to say that the footage and entire telethon experience didn’t just make me feel shy, but ashamed.
I really didn’t know how to answer the kids at school the next day who would say, “I saw you on TV.” Remember, this was Labor Day weekend, so the new school year started the next day. All any kid wants on the first day of school is to fit in and have friends. Having my disability magnified on TV the day before to such an extreme degree that I didn’t even recognize myself, did nothing to help.
At least while watching/participating in the local telethon, I could distract myself by appreciating all the people I knew and loved from Camp. But much worse was when they’d cut back to the national telethon. That stage was full of total strangers telling the world to feel sorry for me. Worst of all was the man himself, Jerry Lewis. I could forgive him for being a “product of his time” if he’d been willing to evolve, engage with the people he claimed to serve, rather than continually oppress us and prop himself up. He had the power and privilege that could have been used for so much more good…. Disability activists asked Jerry to speak of people with MD with respect instead of pity. They asked him to give air time to adults with MD. They asked him to bring awareness to societal barriers that make independent living so hard for people with disabilities–issues we can tackle if we choose to, without waiting for scientists in a lab to make a miracle.
Jerry wasn’t interested, and neither was MDA. They held onto Jerry until very near to the end. The man who continued to host the telethon until 2010 referred to people with MD as living in a “steel imprisonment,” a life full of “indignities,” and only being “half a person” (Parade magazine, September 2, 1990). According to Jerry, with a diagnosis like mine, “you might as well put a gun in your mouth” (1991 MDA Telethon). Because after all, I’m one of those kids who “cannot go into the workplace. There’s nothing they can do. They’ve been attacked by a vicious killer” (1992 MDA Telethon). What did Jerry have to say to the disability activists making crazy demands about respect and educating the public on relevant issues? His words were “Fuck them. Do it in caps. FUCK THEM” (Vanity Fair, September 1993).
Lest you think this was an issue confined to the early 90s, don’t worry, his most memorable quote came from 2001. When asked about the activists who were still showing up every year to picket the telethon and demand respect, Jerry said “Pity? You don’t want to be pitied because you’re a cripple in a wheelchair? Stay in your house!” (CBS Sunday Morning, May 20, 2001)
When asked at the grocery store to round up my total to the next dollar for charity, I say yes to every cause except MDA. I just can’t do it. I can’t bring myself to give them a penny. That doesn’t mean you shouldn’t, but I can’t. Does that make me a bad person? I have no idea. Yes, I did benefit from money MDA raised. Camp was such an important part of my life growing up, and the relationships formed there are still important to me. (I can’t honestly say I got much benefit from MDA outside of Camp, but I hope some people do…) But I’ve paid such a high price already.
I’ll continue paying the price for Jerry’s damage the rest of my life. For 50 years, he helped shape a toxic culture that oppresses disabled people with weapons of pity, low expectations, invisibility, voicelessness, exploitation, objectification, infantilization…. Ableism didn’t start with Jerry Lewis. But with all those years in the spotlight, he had the opportunity to push back and help bring ableism down. He didn’t. Instead, he made ableism into a cash cow that was milked for all it was worth. And I have to navigate this culture every day.
I pay the price for this ableist culture every time strangers stare at me or feel entitled to ask me personal questions. I pay the price when people say to my face that they’d rather die than be me. I pay the price when people are afraid to say the word disability, like it’s too horrific to speak of. I pay the price when I’m spoken to like a child. I pay the price when nobody expects me to have a job/career. I pay the price when people walk into my classroom and can’t figure out who the teacher is. I pay the price when people doubt my ability to have authority or respect with my students. I pay the price when accessibility is treated as a kindness, not a right. I pay the price when my right to die is advocated for more strongly than my right to live. I pay the price when the audience seats are accessible, but the stage is not. I pay the price when single men are kind to me to impress a pretty girl, but don’t see me as a pretty girl worth impressing. I pay the price when I’m told how independent and inspirational I am just for leaving my house. I pay the price when people are eager to speak for me without stopping to listen to me.
Others pay the price too. The 82.5% of the disabled population that’s currently unemployed is paying the price; so many of them want to be working. Those with disabilities who deal with depression and are treated with euthanasia instead of counseling, mood stabilizers, independent living options, etc. pay the price. The disabled children who are murdered by their parents pay the price. The older people who are scared of social shame if they use a mobility device, so they stay home and withdraw from the world, pay the price.
If Medicaid ever goes away, we’ll all pay the price. Even by the threat of it, we’re paying a price.
I’m not the Lorax; I don’t speak for the trees. There are plenty of people with MD who sincerely mourned when Jerry Lewis passed a couple weeks ago. There are plenty who remember their telethon days fondly, and continue to fundraise for MDA. I respect their views.
There are also plenty who agree that Jerry’s methods were problematic, but, they shrug, how else are you going to raise money? The end justifies the means, they believe. That viewpoint makes me sad…. It’s like they’ve grown so used to their cage, that they just accept it. It’s entirely possible to support a cause and a population of people, without degrading them. The social justice world is full of examples.
I tried to be classy and stay quiet when Jerry passed and everyone was expressing their feelings on social media. I won’t miss him, but I’m not the kind of person to dance on anyone’s grave… (Although I’ll admit, I did smile and press the “like” button when a fellow MD-er commented that he successfully “outlived Jerry.”) Then people started passing around that awful vintage telethon photo with me in it! Using my picture to express love for Jerry and his work really pushed me…
I knew I had to share my story. After so many years of having my story told for me, and told wrongly, I have my own voice and I can speak for myself. It was such a relief when I was a teenager with the internet, and I found disability activists online, expressing what I’d always felt about Jerry Lewis and the telethon. Finally, I knew that I wasn’t crazy, and I wasn’t alone. Finally, I was finding words to express what had lived in my heart for years. I didn’t have the courage or platform to to say what I wanted to back then, but I had greater clarity and community, and that kept me sane.
My story isn’t the telethon story. But it’s my telethon story, and it isn’t the only one of its kind. I ask you to take it as no more, and no less, than that.