The Disability Visibility Project blog ran a great series over the last few days about Jerry Lewis’ Muscular Dystrophy Telethon, with articles by disability activists reflecting on their strong and sometimes personal feelings about the telethon and using pity to raise money for disability causes. Each one is well worth reading and exploring further:
Protests against the MDA Telethon started right around the time I woke up to the disability rights movement, and it was one of the first demonstrations I remember of the fact that disability rights is not an easy, simple road. It involves a lot of “biting the hand that feeds you”, and many aspects of disability rights thinking do not come naturally. It’s one thing to observe that disabled people deserve equal rights … that’s something everyone should know instinctively. Unless you have a disability yourself, you have to think actively and practice deliberate empathy to understand how a well-intended fundraiser can be not only distasteful, but even harmful. On the other hand, once you do see it, especially if you have a disability, it’s impossible thereafter not to see it.
I had a conversation this weekend about the Ice Bucket Challenge, and afterwards I realized another thing that bothers me about so many disability fundraising efforts.
I don’t really object to raising money for medical research into disabling conditions. I resent the fact that the general public is consistently more excited about supporting those efforts than they ever are about supporting equal rights, equal access, and the nuts-and-bolts stuff disabled people need to live decent lives with our disabilities. It’s strange, when you think about it. “Medical Research” is so abstract, and outcomes so fleeting, while building ramps and buying people speech synthesizers is entirely concrete, with immediate payoff. You would think all us practical-minded Americans would rather give to pay for things people can use, than to provide open-ended funding for fuzzy dreams. Yet, it’s exactly the opposite.