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As Disability Pride Month draws to a close, and the 35th anniversary of the ADA (Americans with Disabilities Act) was celebrated on July 26th, I wanted to talk more about Change, Not Charity, the PBS documentary I talked about in last week’s post.
Change, Not Charity filled in much more information about the background of the passage of the ADA that I didn’t previously know about. I’m always reminded just how much I have to learn about my community when I watch things like this. There just wasn’t any education about any kind of disability topic when I was growing up. There was no disability history taught in any of my classes, all the way through college. We didn’t have the internet for a good portion of my life, and I didn’t know anyone that was disabled where I lived. You don’t know what you don’t know.
What I did have however, were the Jerry Lewis/Muscular Dystrophy telethons. They were my earliest exposure—not to just to other kids with disabilities—but to kids with the same family of disability that I had. For most of my life, I didn’t see any issue with the telethons. They were raising money for the muscular disease I had. That seemed like a good thing. It wasn’t until I got much older and I started hearing some different views, that I realized just how problematic they were. Change, Not Charity dives right into that at the beginning of the documentary.
Raising money for disability research is one thing, especially for disabilities like ALS and Duchenne’s that are rapidly progressive and fatal. I can’t speak for everyone, but for me, that’s never a bad idea. The Jerry Lewis telethons weren’t presented in that way though. They used pity for people with disabilities and the perspective that having a disability was this horrible thing as a tool to raise money. Instead of showing disability or the disabled people they featured as strong, empowered individuals, they were shown as “sob stories” with horrible lives that everyone was supposed to feel sorry for.
When I started to think back on the telethons years later, it became more and more clear how that representation might have informed my idea of how I saw my own disability. I definitely thought my disability was “bad” and that it was something I wasn’t supposed to embrace. It made me “different” and that was clear as day to me all the time. It made me feel like I was in fact, someone to be pitied. It made me feel like my life was horrible and my disability was a punishment.
I can’t blame all of the ideas I had about myself and my disability on the telethon and it’s also more than fair to say having a disability is often not easy. I don’t think anyone with one would ever say that. That’s not the issue though. The issue is non-disabled people telling us how we’re supposed to feel or controlling the narrative of how we’re portrayed. That’s where the telethons were problematic. It only showed disability in one way (sad and pitiful) and disabled people weren’t the ones putting it on, even if they were participants on the show.
I think Jerry Lewis’s heart was in the right place. I think a lot of people who were involved in those telethons had good intentions. Unfortunately, it was another product of the overall societal viewpoint on disability. The idea that it’s something that no one wants or should want. The idea that it makes your life hopeless and not worth living (something we’re hearing a lot more of again).
What things like the telethon should have been focusing on was raising money to make people with disabilities lives better (and to come up with life saving treatments for people who can die from their disability). Raising money for accessibility. Providing individuals with the mobility aids they needed. Retrofitting homes and cars so people with disabilities could be more independent. Maybe some of the money from the telethons went to that and maybe they even did some of that on the telethons. I honestly can’t remember anymore. But even shifting the perspective of the telethons to that would have made such a difference for so many people, disabled and non-disabled. I can’t help but wonder if I wouldn’t have felt even just a little bit different about my disability had I been given that message instead. That it wasn’t me that needed fixing, but the world around me.
As we continue to fight for our right to exist and the accessibility we need (more so than we have in recent history, I think), may we all know that it’s never us that needs fixing. That were are not the problem or the problem. We are not a strain on society. We are not a burden. We are not something to be erased or kept at home to keep others comfortable. We are here. We are not going anywhere. We are badasses and we will keep fighting for what we deserve: the same rights and access that non-disabled people have every day.
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You are a badass, Jackie. Never forget that for a second. xo
This is such an excellent post, Jackie. You brought me right back to the telethon days and while I wasn’t at all cognizant of the problems with the ways they portrayed disability, my memory of it all is exactly how you described it here. I wish it felt like things were way different now, and while in some ways they are, there’s still so much lack of agency and dignity given to the disabled. Thank you for your honest take here and for shining a light on this.