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People We Love: Ben Mattlin, Los Angeles, CA

In the third of our series of posts about the MDA telethon and the culture of pity/inspiration porn, here’s an excerpt from a story on NPR originally broadcast on August 31, 2012 featuring Ben Mattlin, writer, editor and commentator. As the author of Miracle Boy Grows Up: How the Disability Rights Revolution Saved My Sanity, he wrote about his experiences as a poster boy for MDA and being one of Jerry’s kids.

Black and white photo of an ad featuring Ben Mattlin as a young boy for the Muscular Dystrophy Foundation. He is looking pensively at the camera and is about 7-8 years old. The text at the top of the image says, "If I grow up I want to be a fireman."

“My parents kind of believed in it. This was the only organization that existed that would serve them — parents of a child with a neuromuscular disability. First, it was fun — ‘I’m going to be famous,’ I thought. But after a short time, it got a bit tiresome. … My final ad was a big full-page ad. … They had me stand in leg braces and they told me the caption was going to be: ‘If I grow up, I want to be a fireman.’ I was 6 [or] 7 years old. I was told I had a normal life expectancy at that point [and] I did not want to be a fireman. So I was quite upset. … I knew I couldn’t be a fireman. That was absurd. … It felt untrue. It felt exploited.

“It gave me a sense of what it meant to be a disabled kid that was not flattering, and did not feel like reality. It made me distance myself from … my people, from people like me. And when I got over that and came to associate with other disabled people, it was a … realization that there are some pretty cool people out there and I shouldn’t turn my back on that community just because of … the impression I had of it from these fundraising things that really are not doing justice — and frankly a disservice — to the community they aim to serve.”

For the entire interview of Ben Mattlin:



Ben Mattlin

More on Ben’s book:


Twitter: @benmattlin


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