I remember being a young kid, maybe 6-7 years old, and going on live TV in front of thousands of people. I remember by parents saying on TV that I was 'dying' - and I remember how painful that was because that was honestly news to me.

#EndTheTelethon #TurnOffPity

Of course, I wasn't dying. I was a child who had complex medical needs, and of course, this was used to shamelessly raise money from a public who pitied disabled people.

#EndTheTelethon #TurnOffPity

I remember how hard that was to carry. I had never felt so alone in my life. I had to carry that by myself, and to some extent, I still do carry that. When I see that MDA is doing another telethon, I think of that young girl. And how afraid she was.

#EndTheTelethon #TurnOffPity

It troubles me how often disabled people's narratives are crafted by interested parties who are not disabled people themselves. The disability rights mantra of "nothing about us, without us" is completely ignored by organizations like MDA.

#EndTheTelethon #TurnOffPity

It troubles me too, how cure mentalities completely eclipse every other concern. To be clear, I think it's ok for disabled people to support cures and treatments for things like SMA. To some extent I do myself. BUT also,

Disabled people overwhelmingly live in poverty. disabled people are more likely to experience violence at the hands of caregivers and others. disabled people often do not have access to the things that give them independence. disabled people are often under/unemployed

organizations like MDA could do a lot of good in these areas. after all - they raise millions of dollars each year! but no, it's cures cures cures. There's so much they could do to improve our quality of life but they don't.

#EndTheTelethon #TurnOffPity