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Why Deaf People Should Boycott Jerry’s Telethon

Posted on 3 September 2007. Filed under: Advocacy, Audism, Disability |

Every year at around this time, Jerry comes along to do a telethon about “his” kids. Meaning, all children with muscular dystrophy. Jerry wants, most earnestly, to find a cure for them.

Today, disabled bloggers and other sympathizers from across the blogosphere are blogging against Jerry’s telethon. (Go to this site and follow the links to some of the excellently written blog posts on this subject. Even if it means you miss the rest of mine. Seriously. Or if you’re still wondering why you should bother, then read on.)

You may be wondering two things. One, why would people who themselves (in many, not all cases) use wheelchairs, or even people who have muscular dystrophy themselves, object to a telethon meant to “help” them? And, two, why do I say that Deaf people should care?

Let me tell you a story that I hope might help.

A few years ago, I started experiencing some mysterious pain in the heel of my right foot that made it nearly impossible to walk. Every time I put weight on it, the pain was excruciating. I could only barely bring myself to walk the two blocks to and from the metro; the idea of going any further than that was unbearable.

Yes, of course, I went to the hospital to check it out, and got a referral to a foot specialist, and made an appointment to see him as well. But in the mean time, my mobility was drastically constricted. I knew that if I didn’t do something IMMEDIATELY, my life would be restricted. Without some form of accommodation, I wouldn’t be able to face up to the idea of hopping out the door to go a few blocks to nearby restaurants I enjoyed at lunch time. Side trips after work to go to restaurants or stores would be simply out of the quesiton. Even going to the cafeteria in my building at work would have been agony.

So I brought out an old pair of crutches and started using it. Presto chango — the pain, of course, did not go away. I still had my new, temporary “mobility impairment.” But at least now I was no longer restricted by it, or at least not in the same way. True, using crutches makes it cumbersome to carry other things or deal with doors. And too much crutch-walking made my hands tired. But at least now I could walk about as far as I liked without having to count my steps and decide how much pain I could take before I started. Crutches gave me an astounding degree of freedom.

Doctor appointment day rolled around. I went to see the foot specialist. If it matters, it turns out I had something called plantar fascia. But the relevant bit is how the doctor reacted to the idea of my using crutches.

“You don’t need them,” he said.

I explained I found mobility easier with them. I didn’t go into all the details. I didn’t point out, for example, that as someone who does not drive, the inability to bring myself to walk more than a block or two at a time is a MAJOR limitation on my ability to go ANYwhere AT ALL. But given that this doctor, as a specialist, had to know just how much pain I was in or how much it limited the walking I could do, you would think that I shouldn’t need to go into that level of detail. But no. “You don’t need them,” he said again. And, if I recall, again. He just could not seem to process the idea that, for me, crutches were not a sign of infirmity to be abandoned at the first chance. For me, at that time, crutches represented freedom.

Is my point clear yet?

Do you see a parallel, for example, between this doctor’s attitude toward my use of crutches and the attitude of some doctors and parents toward the use of sign language with deaf children? Some people see sign language as, roughly, the Deaf person’s equivalent of crutches. For them, sign language just isn’t as good as “the real thing”–which, for them, is spoken language. Sign language is a sign of infirmity, to be abandoned at the first chance.

Spoken language–or mobility without crutches, or mobility without a wheelchair–is just inherently better. Even if it consumes all your psychic energy and concentration, even if it imposes massive restrictions on the range of choices you can make in your life, it’s just inherently better to be “normal.” Or, if you flunk normality, then it’s still just self-evident that it’s automatically better if you can at least manage to convincingly FAKE being “normal,” no matter what cost you have to pay for succeeding. As long as you’re the only person who has to pay that cost, as long as other people don’t have to look at discomforting reminders that they themselves could someday become disabled as they age (crutches, wheelchair, hearing aids, sign language, all create the idea that “Wow, *I* could someday need these things if I live long enough”), then–isn’t that just OBVIOUSLY BETTER? Doesn’t it make you happy to know that you are no longer contributing to other people feeling mildly discomfited for a moment or two each day? Isn’t that enough by itself to make it worth all the enormous moment-to-moment sacrifices you have to make in order to save others that transitory twinge of discomfit?

Of course not.

But don’t forget the next tactic that hearing, temporarily able-bodied people use to save themselves discomfit: THE CURE. People want to cure deafness. And, of course, people want to cure muscular dystrophy.

Now, muscular dystrophy is different from being Deaf. There isn’t all the cultural baggage and identity baggage that goes with it. Some types of muscular dystrophy can limit the life span. That alone makes it worth a cure. You probably wouldn’t find nearly as many people with muscular dystrophy who would reject a cure as you would find in the culturally Deaf community.

But, nevertheless. People with muscular dystrophy, and people with disabilities in general, may not always necessarily reject medical research or cures — but they DO object to HOW people raise the money for them. What they object to is the premise on which Jerry’s whole telethon is based. The premise here is, “Oh, these poor poor children are in wheelchairs, how horrible. They are CONFINED to wheelchairs, how horrible. We have to rescue them from this tragic fate, the fate of the WHEELCHAIR.”

But, using a wheelchair is no more terrible than using sign language. True, it doesn’t create the same sense of cultural identity and community solidarity that any language, by its nature, is bound to create. But, the mere fact of using a wheelchair is not, in and of itself, tragic, any more than it is tragic that some people find sign language to be a far easier mode of communication than speech. A wheelchair is not even confining. As I found first hand, mobility aids in general can be immensely liberating.

Wheelchair users object to phrases like “confined to a wheelchair,” in part because it is just plain offensive. How would you feel if someone characterized you as being “confined to communicating only through sign language” as if this were, in and of itself, something to be mourned? Instead of celebrating that so many alternatives exist for communicating? Or, in the case of people with mobility impariments, for mobility? But there is another reason to object to phrases like “confined to a wheelchair.” And that reason is that the phrase just point blank makes no sense. If I hadn’t picked up a pair of crutches, then my life would have been limited to the commute between work and home, home and work, and that would have been it for the weeks it took to completely heal my plantar fascia. I was not, by any means, “confined” to crutches, any more than a person who cannot walk is “confined” to their wheelchair. I was FREED by my crutches, just as any person in a wheelchair is clearly FREED by (never confined to!) their wheelchair.

But the idea that wheelchair is a confinement, that a wheelchair or any other kind of accommodation to any kind of disability (crutches, a TTY or video phone, closed captions, Braille, anything) is itself inherently tragic because they (to hearing able-bodied people) symbolize and represent the disability that is also tragic —

All of this is the kind of attitude and perceptionconveyed each year through Jerry’s telethon. The telethon presents temporarily able-bodied hearing people with yet more images of people with disabilities as objects of pity and as people to cry over. Jerry’s telethon reinforces the idea that any person who walks, talks, thinks, hears, sees, moves, or DOES things differently is a person we want to help not because they are human beings who deserve more options in life but simply because they are inherently tragic figures who ought to be–well, more human. “Human” here being equated to “normal.” “Normal” meaning able to walk, talk, etc., like “normal” people are “supposed” to. Because if you don’t do these things, then you aren’t really human. You’re just something to be pitied, an object that sits there passively waiting for other people to come help you. Your sole purpose in life is to give other people a chance to show how generous and kind they can be. You have no real purpose of your own.

That is why Deaf people should care when any hearing, temporarily able-bodied person depicts any person with a disability as being inherently “tragic” just for existing, or “confined” to the very tools that free them. These kinds of images hurt us too, even when there isn’t a Deaf person anywhere in sight.

Whether or not you consider “Deaf” to be a disability, we’re still in the same boat. Whether or not you ever wanted to be in the same boat with “those” hearing people with disabilities, whether or not it was ever your choice, here we are. And we’ll not get out of it until we work together in solidarity. We’ll not get out until ALL Deaf people, and ALL people with ALL disabilities, are able to work together to teach the rest of the world that there is nothing tragic about us merely by fact of our existence. Because “those” people aren’t “those.” By whatever labels we choose to wear — or choose to reject — we’re all “us,” riding the same boat in a sea of myths and misunderstanding. It’s time to start paddling in the same direction.

Perhaps you’re thinking we shouldn’t support hearing disabled people because, after all, they’re *hearing.* Or because they’re more “tragic” than us because they don’t have a culture and language and we do. Or perhaps you’re thinking hearing disabled people just “don’t get” Deaf culture, so why should we bother learning from them if they won’t learn from us? Or you might be thinking that Deaf people are just inherently different from people with disabilities, so there can’t possibly be anything we share in common. (Or by “different” did you REALLY mean “better”? In which case, how are you better than any hearing person who looks down upon US?)

If you’re thinking any of these things, then just follow the link to http://karasheridan.com/?p=164 and give it a chance. Read a few posts. You may come across some posts that surprise you a great deal.

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