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I didn’t think I was going to blog about the telethon, only because I’ve been up to my eyebrows in telethon-related organizing and with the campaign being posted tonight at midnight, I thought my position it was clear.
I have Muscular Dystrophy, but like NO explains on Think Freestyle I believe disability is a cultural identity and don’t feel the need to label myself with a medical diagnosis. Muscular dystrophy/congenital myopathy/or whatever the doctors are arguing “it” is, these aren’t words I use to describe myself, rather they belong to my doctors and the medical establisment [field or structure].
I’ve been reading Accidents by Nature, a book for younger teens written by Harriet Mcbryde Johnson, a woman who has been protesting the telethon for 17 years. The main character is one many disabled people can identify with as she grew up mainstreamed and separated herself from disability because society taught her that it was disabling unless she “rose above” when actually disability is just a natural, beautiful, complex part of the human experience. I don’t know if it’s because the book is set in NC and I recognize all the names, but it’s like I’m reading my own story. I haven’t reached the end of the book yet but I believe she will understand she is like the other disabled kids and learn to be proud of that, rather than trying to deny, hate, heal, erase, or “overcome” her disability.
I remember the moment I learned I even had a community. It was the first time I didn’t feel like I had to “prove myself.” It was the first time I didn’t feel like I had to smile every second. It was the first time I didn’t turn away and disassociate myself from other disabled people. During that moment, Yoshiko was passing out “I-Power” stickers with our names on it, powerchairs were crashing into each other between tables, and for the first time it really felt like I wasn’t denying something inherently apart of me. It was very much like my queer “coming out” experience.
Yes, I don’t buy into a cure because I think it is surrounded in ableist rhetoric [talk where disability is hated or seen as negative]. Yes, I don’t believe in getting nondisabled people to pay for our shit (I’m not talking about services people are entitled to but community-related things)—I think if we want to create real meaningful change, it’s not going to be through grants or donations it’s going to have to be something we invest in and fund ourselves. However, the main reason I oppose the telethon is because I can’t sit by and let someone tell my people what we should think of ourselves. I can’t let a telethon, drenched in pity, define disability; even though I didn’t watch the telethon as a child, my concept of disability was quietly wrapped up in everything it promoted. I don’t want that to be the case for future generations of disabled people.
It’s true, the telethon is just one thing and Jerry’s getting old anyways. But maybe, if we keep faith and keep fighting, we can chip away at the charity model of disability until it crumbles away. Protesting may alienate some people, that’s understandable, but for me, it comes from a place of love and pride.