A blogswarm was organized over Labor Day to protest Jerry Lewis’ Telethon. While I did not personally participate in this protest, I am very interested to be observing. Theoretically, I can understand how the telethon is using childrens’ disabilities as a means to provoke pity and subsequently donations to the Muscular Dystrophy Association. I can also see that this is done to help children with MD and is probably done with the best intentions. Jerry Lewis clearly thinks he’s doing a good thing, while the disability bloggers couldn’t be more outspoken against him. In a first this year, bloggers got together around this issue to share their opinions. For them, this telethon is the perfect representation of the different understandings of society should approach disability. For a phenomenal list or responses and links to other great disability blogs, check out Kara Sheridan's recap here. I wanted to pull out a few nuggets of argument that I found amongst all these that help clarify to the able bodied person why this telethon is a problem.
A post from Iron Jawed Angel presents a great summary of the opposition to the telethon:
“Jerry Lewis's MDA telethon hurts people with disabilities. First, it perpetuates the myth that living life with a disability is a monumental tragedy. And that it is somehow a life without dignity or joy. Both could not be further from the truth. What is presented on the telethon is an able bodied person's idea of what it would be like to be disabled. The heartwrenching video clips that are put together are done in the most paternalistic, ablist light possible. There is never any credence given to the fact that maybe it's society itself, and not just the people with disabilities, that need to change. Apparently, no one who takes part in the telethon ever stops to consider that they are committing cultural genocide.”
I think that by cultural genocide she means that this telethon reinforces ideas that disabilities are awful, should not exist, and must be cured. A similar uproar developed over Christopher Reeve’s determination to cure his disability instead of live into it. By narrowly emphasizing the need for a cure, the telethon rejects and actively seeks to extinguish a whole culture of strength and beauty that exists in the disability community.
The telethon is structured to provoke pity for suffering children and to convert it into donations. 21 year old David over at Growing up with a Disability posted some well composed thoughts on the destructiveness of pity. Here are some highlights:
“1. Pity [fosters] negativity. The negative aspects of the condition are emphasized and magnified, rather then the positive aspects and enormous potential of the individual's life. Instead of focusing on what a person can do by embracing all their strengths and gifts, pity limits a person.
6. Pity towards people with disabilities gives society the false impression that disability and happiness cannot coexist. That isn’t necessarily true, and that simply serves to cause more pity.
7. Another problem with charity for pity is that it can give the impression that once the charitable act has been done, societal responsibilities are finished...”
And finally, here is a great picture that sums it all up from Asperger Square 8.
Only a few great thoughts here on a really immense topic that epitomizes the struggle that people with disabilities have with the able bodied. Each side has a perspective that they feel is not only justifiable but morally motivated. Jerry Lewis feels so strongly about the issue that he has surely worked tirelessly to raise funds for a cure. And he is so sure in his perspective that he has said with conviction, "...if people in wheelchairs don't want to be pitied then they shouldn't leave their houses." There is a lot of work to do.
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