The disability rights movement changed my life. I have been benefiting from legislation fought for by disabled activists who came before me since I was a young child. Like Mike Ervin and various other activists, I am a former poster brat, a kid pimped out for profit by the machine that was MDA, While still cute enough to raise them tons of cash. For a long time, my identity was intertwined with what I thought I understood about my life as a disabled person.
I had grown up believing and being told that most if not all of us with neuromuscular disabilities would not survive into adulthood. There was no expectation on my life, so my doctors told me consistently that they had absolutely no idea of the outcome of my life. At the same time, I was internalizing the message I was supposed to be spreading in order to raise money for MDA, the idea that without a cure our lives are not worth living if we survive, at all. Jerry Lewis used the pity model for profit, to make MDA millions. They promised a cure…to make us “normal” and as children we took that to heart. Many of us thought of ourselves as not normal. We believed we were or at least all of our friends with neuromuscular disabilities would die young. For some, there was a belief of no point in attempting to have a future, because it was pointless if death was coming anyway.