A "genetically defective and proud" group takes a telethon where no man has gone before

By Kevin Irvine

As a pimply-faced teenager who read X-Men comic books -- with their lively tales of mutants battling for acceptance -- I latched onto a truth that Jerry Lewis and all the pity-thon Muscular Dystrophy Association (MDA) types have never understood: Mutants are good when we accept ourselves, hang out with other mutants, and don't try to be something we are not.

I reaffirmed this the Sunday of Labor Day weekend, when my activist group, Jerry's Orphans, took over the local affiliate of the MDA Telethon in a studio at a Chicago hotel. There were about 20 of us, with a wide variety of disabilities. We stormed the building, crammed ourselves into the studio doorway, and Mike, Chris and Barb actually got in front of the cameras.

Then the MDA volunteers and some hired goons realized what was going on and tried to stop us. Before I knew what happened, two of us were forcibly (and painfully) removed. Translation: I was thrown out onto the sidewalk. So was my friend, Ken, who is blind -- and was so angry he was swinging his cane around and almost whacked me in the melee.

So, while my friends inside held down the studio and demanded a press conference, Ken and I staged a mini-protest on the street. Many of the passersby seemed really into my sign, which read "Genetically Defective and PROUD" on one side, "Mutant Power" on the other. With each supportive smile or nod, I thought, "Wow, effective signage."

I was finally informed that Jerry's volunteers were sharing a hotel with a huge science fiction convention, and they were really psyched that there was a guy supporting "Mutant Power" on the street outside their hotel. Oh.

Simply Revolting

Inside, my friends faced a human blockade of plucky, veteran MDA volunteers who had jumped into combat duty -- away from their precious phones. These were the MDArmy's "True Believers."

One particularly annoying soldier engaged my fiance in a discussion about why we were there. He didn't know what "paternalism" meant (if you don't know either, look it up) and he insisted on calling us "patients." That is largely how the MDA pity-thon depicts us: As medical problems needing to be solved and helped, not as a distinct group with our own cultural identity.

Which brings me right back to our friends, the sci-fi conventioneers. Not only did they like my sign, one woman even came over and invited us to their after-parties -- gatherings for people with many different interests and orientations, and we were welcome at all of them.

Then I remembered why I loved sci-fi so much as an adolescent: Being a freak is not just OK, it's celebrated! Growing up with hemophilia (even logging a couple of years as a quasi-poster child for blood drives) and learning to live with HIV as a teenager, I found some comfort in a fictional world populated by freaks who really didn't fit in to the dominant culture, and who never would.

As an adult, I eventually stopped trying to "pass" as an "able-bodied" person, and now I find comfort in the diverse, rich, weird, powerful, fun, sexy, and freaky community of crips and gimps. Any fan will tell you that Star Trek got a lot better when the characters stopped trying to annihilate or assimilate all of the weird & different beings that they encountered, and instead worked at understanding and supporting diverse cultures. Now, the shows carry this respect for genetic diversity as a badge of honor. If only Captain Jean-Luc Picard and company could rescue us from the MDA Telethon, which exploits people's fears of being on the other side of the telethon, of being one of them.

Better Solutions

But many of us who have lived all or most of our lives with MD, hemophilia, and other disabilities don't necessarily want or need a "cure." I like who I am and my disabilities are a fundamental part of my identity. Do these adults with muscular dystrophy who support the telethon really want to live in a world where they would not exist? I'm not opposed to medication and technological benefits -- I wouldn't be alive without them -- but how can we stand by (and smile for the camera) as scientists plot our extinction? And what message are these (apparently able-bodied) telethon parents who are showcased really projecting on their kids (and the TV nation)? The message with which these kids grow up is that they are fundamentally flawed and need the "fix" that only more research can provide.

The MDA raises somewhere in the neighborhood of $50 million every year with their pity-parade. When we have finally come through the era of budget deficits, why is the MDA still cultivating a "charity culture"? For what we spend on a couple of warplanes, we could buy plenty of wheelchairs and augmentative communication devices! Medicaid alone shovels about $80 billion into nursing "homes" on an annual basis (and the warehousers are crying poverty to Congress as we speak). If the MDA really wants us to get off its back, stop the damn telethon and fight like hell for our Congress to give us the support we need. Together we can get affordable and accessible housing, personal assistance, equipment, jobs, accessible transit, aggressive civil rights enforcement, and benefits above subsistence level if we can't work.

As Captain Picard and our sci-fi freak friends would say: Make it so.

September 12, 2000

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