Why Deaf People Should Boycott Jerry\u0019s Telethon <\/p>\n
September 3, 2007 <\/p>\n
Every year at around this time, Jerry comes along to do a telethon
\nabout \u001chis\u001d kids. Meaning, all children with muscular dystrophy.
\nJerry wants, most earnestly, to find a cure for them. <\/p>\n
Today, disabled bloggers and other sympathizers from across the
\nblogosphere are blogging against Jerry\u0019s telethon. (Go to this site
\nand follow the links to some of the excellently written blog posts on
\nthis subject. Even if it means you miss the rest of mine. Seriously.
\nOr if you\u0019re still wondering why you should bother, then read on.) <\/p>\n
You may be wondering two things. One, why would people who themselves
\n(in many, not all cases) use wheelchairs, or even people who have
\nmuscular dystrophy themselves, object to a telethon meant to \u001chelp\u001d
\nthem? And, two, why do I say that Deaf people should care? <\/p>\n
Let me tell you a story that I hope might help. <\/p>\n
A few years ago, I started experiencing some mysterious pain in the
\nheel of my right foot that made it nearly impossible to walk. Every
\ntime I put weight on it, the pain was excruciating. I could only
\nbarely bring myself to walk the two blocks to and from the metro; the
\nidea of going any further than that was unbearable. <\/p>\n
Yes, of course, I went to the hospital to check it out, and got a
\nreferral to a foot specialist, and made an appointment to see him as
\nwell. But in the mean time, my mobility was drastically constricted.
\nI knew that if I didn\u0019t do something IMMEDIATELY, my life would be
\nrestricted. Without some form of accommodation, I wouldn\u0019t be able to
\nface up to the idea of hopping out the door to go a few blocks to
\nnearby restaurants I enjoyed at lunch time. Side trips after work to
\ngo to restaurants or stores would be simply out of the quesiton. Even
\ngoing to the cafeteria in my building at work would have been agony. <\/p>\n
So I brought out an old pair of crutches and started using it. Presto
\nchango \u0014 the pain, of course, did not go away. I still had my new,
\ntemporary \u001cmobility impairment.\u001d But at least now I was no longer
\nrestricted by it, or at least not in the same way. True, using
\ncrutches makes it cumbersome to carry other things or deal with
\ndoors. And too much crutch-walking made my hands tired. But at least
\nnow I could walk about as far as I liked without having to count my
\nsteps and decide how much pain I could take before I started.
\nCrutches gave me an astounding degree of freedom. <\/p>\n
Doctor appointment day rolled around. I went to see the foot
\nspecialist. If it matters, it turns out I had something called
\nplantar fascia. But the relevant bit is how the doctor reacted to the
\nidea of my using crutches. <\/p>\n
\u001cYou don\u0019t need them,\u001d he said. <\/p>\n
I explained I found mobility easier with them. I didn\u0019t go into all
\nthe details. I didn\u0019t point out, for example, that as someone who
\ndoes not drive, the inability to bring myself to walk more than a
\nblock or two at a time is a MAJOR limitation on my ability to go
\nANYwhere AT ALL. But given that this doctor, as a specialist, had to
\nknow just how much pain I was in or how much it limited the walking I
\ncould do, you would think that I shouldn\u0019t need to go into that level
\nof detail. But no. \u001cYou don\u0019t need them,\u001d he said again. And, if I
\nrecall, again. He just could not seem to process the idea that, for
\nme, crutches were not a sign of infirmity to be abandoned at the
\nfirst chance. For me, at that time, crutches represented freedom. <\/p>\n
Is my point clear yet? <\/p>\n
Do you see a parallel, for example, between this doctor\u0019s attitude
\ntoward my use of crutches and the attitude of some doctors and
\nparents toward the use of sign language with deaf children? Some
\npeople see sign language as, roughly, the Deaf person\u0019s equivalent of
\ncrutches. For them, sign language just isn\u0019t as good as \u001cthe real
\nthing\u001d\u0013which, for them, is spoken language. Sign language is a sign
\nof infirmity, to be abandoned at the first chance. <\/p>\n
Spoken language\u0013or mobility without crutches, or mobility without a
\nwheelchair\u0013is just inherently better. Even if it consumes all your
\npsychic energy and concentration, even if it imposes massive
\nrestrictions on the range of choices you can make in your life, it\u0019s
\njust inherently better to be \u001cnormal.\u001d Or, if you flunk normality,
\nthen it\u0019s still just self-evident that it\u0019s automatically better if
\nyou can at least manage to convincingly FAKE being \u001cnormal,\u001d no
\nmatter what cost you have to pay for succeeding. As long as you\u0019re
\nthe only person who has to pay that cost, as long as other people
\ndon\u0019t have to look at discomforting reminders that they themselves
\ncould someday become disabled as they age (crutches, wheelchair,
\nhearing aids, sign language, all create the idea that \u001cWow, *I* could
\nsomeday need these things if I live long enough\u001d), then\u0013isn\u0019t that
\njust OBVIOUSLY BETTER? Doesn\u0019t it make you happy to know that you are
\nno longer contributing to other people feeling mildly discomfited for
\na moment or two each day? Isn\u0019t that enough by itself to make it
\nworth all the enormous moment-to-moment sacrifices you have to make
\nin order to save others that transitory twinge of discomfit? <\/p>\n
Of course not. <\/p>\n
But don\u0019t forget the next tactic that hearing, temporarily
\nable-bodied people use to save themselves discomfit: THE CURE. People
\nwant to cure deafness. And, of course, people want to cure muscular
\ndystrophy. <\/p>\n
Now, muscular dystrophy is different from being Deaf. There isn\u0019t all
\nthe cultural baggage and identity baggage that goes with it. Some
\ntypes of muscular dystrophy can limit the life span. That alone makes
\nit worth a cure. You probably wouldn\u0019t find nearly as many people with
\nmuscular dystrophy who would reject a cure as you would find in the
\nculturally Deaf community. <\/p>\n
But, nevertheless. People with muscular dystrophy, and people with
\ndisabilities in general, may not always necessarily reject medical
\nresearch or cures \u0014 but they DO object to HOW people raise the money
\nfor them. What they object to is the premise on which Jerry\u0019s whole
\ntelethon is based. The premise here is, \u001cOh, these poor poor children
\nare in wheelchairs, how horrible. They are CONFINED to wheelchairs,
\nhow horrible. We have to rescue them from this tragic fate, the fate
\nof the WHEELCHAIR.\u001d <\/p>\n
But, using a wheelchair is no more terrible than using sign language.
\nTrue, it doesn\u0019t create the same sense of cultural identity and
\ncommunity solidarity that any language, by its nature, is bound to
\ncreate. But, the mere fact of using a wheelchair is not, in and of
\nitself, tragic, any more than it is tragic that some people find sign
\nlanguage to be a far easier mode of communication than speech. A
\nwheelchair is not even confining. As I found first hand, mobility
\naids in general can be immensely liberating. <\/p>\n
Wheelchair users object to phrases like \u001cconfined to a wheelchair,\u001d
\nin part because it is just plain offensive. How would you feel if
\nsomeone characterized you as being \u001cconfined to communicating only
\nthrough sign language\u001d as if this were, in and of itself, something
\nto be mourned? Instead of celebrating that so many alternatives exist
\nfor communicating? Or, in the case of people with mobility
\nimpariments, for mobility? But there is another reason to object to
\nphrases like \u001cconfined to a wheelchair.\u001d And that reason is that the
\nphrase just point blank makes no sense. If I hadn\u0019t picked up a pair
\nof crutches, then my life would have been limited to the commute
\nbetween work and home, home and work, and that would have been it for
\nthe weeks it took to completely heal my plantar fascia. I was not, by
\nany means, \u001cconfined\u001d to crutches, any more than a person who cannot
\nwalk is \u001cconfined\u001d to their wheelchair. I was FREED by my crutches,
\njust as any person in a wheelchair is clearly FREED by (never
\nconfined to!) their wheelchair. <\/p>\n
But the idea that wheelchair is a confinement, that a wheelchair or
\nany other kind of accommodation to any kind of disability (crutches,
\na TTY or video phone, closed captions, Braille, anything) is itself
\ninherently tragic because they (to hearing able-bodied people)
\nsymbolize and represent the disability that is also tragic \u0013 <\/p>\n
All of this is the kind of attitude and perceptionconveyed each year
\nthrough Jerry\u0019s telethon. The telethon presents temporarily
\nable-bodied hearing people with yet more images of people with
\ndisabilities as objects of pity and as people to cry over. Jerry\u0019s
\ntelethon reinforces the idea that any person who walks, talks,
\nthinks, hears, sees, moves, or DOES things differently is a person we
\nwant to help not because they are human beings who deserve more
\noptions in life but simply because they are inherently tragic figures
\nwho ought to be\u0013well, more human. \u001cHuman\u001d here being equated to
\n\u001cnormal.\u001d \u001cNormal\u001d meaning able to walk, talk, etc., like \u001cnormal\u001d
\npeople are \u001csupposed\u001d to. Because if you don\u0019t do these things, then
\nyou aren\u0019t really human. You\u0019re just something to be pitied, an
\nobject that sits there passively waiting for other people to come
\nhelp you. Your sole purpose in life is to give other people a chance
\nto show how generous and kind they can be. You have no real purpose
\nof your own. <\/p>\n
That is why Deaf people should care when any hearing, temporarily
\nable-bodied person depicts any person with a disability as being
\ninherently \u001ctragic\u001d just for existing, or \u001cconfined\u001d to the very
\ntools that free them. These kinds of images hurt us too, even when
\nthere isn\u0019t a Deaf person anywhere in sight. <\/p>\n
Whether or not you consider \u001cDeaf\u001d to be a disability, we\u0019re still in
\nthe same boat. Whether or not you ever wanted to be in the same boat
\nwith \u001cthose\u001d hearing people with disabilities, whether or not it was
\never your choice, here we are. And we\u0019ll not get out of it until we
\nwork together in solidarity. We\u0019ll not get out until ALL Deaf people,
\nand ALL people with ALL disabilities, are able to work together to
\nteach the rest of the world that there is nothing tragic about us
\nmerely by fact of our existence. Because \u001cthose\u001d people aren\u0019t
\n\u001cthose.\u001d By whatever labels we choose to wear \u0014 or choose to reject \u0014
\nwe\u0019re all \u001cus,\u001d riding the same boat in a sea of myths and
\nmisunderstanding. It\u0019s time to start paddling in the same direction. <\/p>\n
Perhaps you\u0019re thinking we shouldn\u0019t support hearing disabled people
\nbecause, after all, they\u0019re *hearing.* Or because they\u0019re more
\n\u001ctragic\u001d than us because they don\u0019t have a culture and language and
\nwe do. Or perhaps you\u0019re thinking hearing disabled people just \u001cdon\u0019t
\nget\u001d Deaf culture, so why should we bother learning from them if they
\nwon\u0019t learn from us? Or you might be thinking that Deaf people are
\njust inherently different from people with disabilities, so there
\ncan\u0019t possibly be anything we share in common. (Or by \u001cdifferent\u001d did
\nyou REALLY mean \u001cbetter\u001d? In which case, how are you better than any
\nhearing person who looks down upon US?) <\/p>\n
If you\u0019re thinking any of these things, then just follow the link to
\nhttp:\/\/www.karasheridan.com\/ and give it a chance. Read a few posts.
\nYou may come across some posts that surprise you a great deal. <\/p>\n
Link:<\/p>\n
Why Deaf People Should Boycott Jerry’s Telethon<\/a><\/p><\/blockquote>\n