I’ve just learned via email and twitter that activist, poet, and amazing woman Laura Hershey has died. I have to admit that I’m deeply hoping that someone pops up says “No, no, you misunderstand, she’s not dead!” because I just cannot currently imagine a world without Laura Hershey in it.

For some, Laura is most famous for her bravery and strength in confronting the Jerry Lewis Telethon, organizing counter-protests and bluntly exposing the hypocrisy of honouring a man who expresses such disdain towards people with disabilities as a “humanitarian”. You can read her amazing article, From Poster Child to Protester at CripCommentary.

The telethon’s hegemony over the image of disability is quite staggering. A 1996 press release issued by MDA states, “According to A.C. Nielsen, last year’s Telethon was watched by some 70 million Americans or 27 million households. The MDA Telethon — considered the granddaddy of all Telethons — ranks in viewership with the World Series and the Academy Awards. ” Those 70 million people are absorbing a message shaped by greed, deception, and bigotry. The bigotry of Jerry Lewis is worth discussing. I don’t necessarily enjoy attacking another person’s motives, but I hear defenders saying, “Jerry Lewis is trying to help so many people. How dare you criticize his methods?” This means-justifies-the-ends argument has a long and despicable history, which I don’t need to go into here. Even more dangerous is the attitude that people who are “being helped” have no right to say how they want to be helped, or treated, or thought of. This is paternalism at its worst. By being the object of charitable efforts, do we thereby waive our right to respect, and to free speech? If people are really interested in helping me, wouldn’t they want to hear me tell my own story, rather than hearing a distorted version of it from someone who not only doesn’t share my experience, but who doesn’t even seem to want to listen to me? With the stated goal of “helping” his “kids,” Jerry Lewis is helping to keep alive the most pernicious myths about people who have disabilities. He ignores our truth, substituting his own distorted assumptions. If our protest did nothing else, it allowed some of us the opportunity to say, “No, this is not our reality. If you want to know what our lives are like, listen to us. If you want to know what we need, ask us. If you truly want to help us, let us tell you how. And if you pity and fear us, please own that; then let us work together at changing the world so that disability will not be something to fear, but something to try to understand.” The response to our protest has been interesting. Many people seem to resent our daring to object to these distortions, half-truths, and stereotypes. I have been called “ungrateful,” “cruel,” and “insensitive” — simply for trying to counter all this with the truth, with my truth. At the very least, I feel that the protest has enabled me and others to begin getting on record our own stories, in contrast to the misleading accounts that come from the telethon.

Laura also made videos to emphasize the work that people with disabilities were doing on their own behalf to emphasize that they were not objects of pity.

Transcript:

The ‘It’s Our Story’ titles roll while tinkly piano music plays. White symbols of sign language and a person in a wheelchair flash against the background, which is suggestive of a US flag, with the continental United States in the blue square instead of the usual 50 stars. The video opens on Laura Hershey, a powerchair user wearing a nasal cannula and glasses. The title of the video is “Jerry’s Kids”, and I believe she’s referring to the group “Jerry’s Orphans”. Laura: That’s actually a group that was started in Chicago by Mike Irvin, Chris Matthews, and several other people. And I worked with them a lot organziing these protests nationally. I think what the name says is that Jerry Lewis doesn’t have the right to claim us as his quote “kids”, especially as he’s not interested in our perspective. He completely trashes people who question or challenge the telethon approach. He’s attacked us in the press, calling us ungrateful, claiming that he bought us our wheelchairs which is, you know, completely untrue. You know, whatever ego trip he gets thinking of himself as our saviour, or our daddy, or whatever it is he thinks, we reject that. We’re not his kids, we’re adults, and we’re our own people. We don’t belong to him.

Laura was also a poet, whose poetry not only described her experience as a proud cripple, but also as a lesbian, and as the mother of an adopted daughter. The most recent poem of her site is titled “Adopting a Fourteen-Year-Old in the 21st Century”.

I’m sorry, I want to say something profound, something that will make it clear what an influence Laura has had, on myself, on almost everyone I know in disability rights activism, on disability studies. She’s often cited in the things I read in academia, and often cited by the people I know in activist circles. I feel such a deep and personal loss, even though I didn’t know Laura through anything more – or less – than her writing.

My heart and thoughts go out to her family and loved ones.

Laura Hershey

Laura’s column for the Christopher & Dana Reed Foundation

Laura’s article at the Huffington Post: Independence and Interdependence: Equally Important Values

You Get Proud by Practicing, by Laura Hershey, an excerpt: