Does disability really need to be 'fixed'?

Science would say yes. A search of our souls might tell us otherwise.

By JOHN LEE CLARK

Last update: June 8, 2009 - 10:40 AM

Every time there is an advance in surgical audiology or genetic engineering, a wave of alarm ripples through the signing community. Doctors are intent on eradicating deafness. They subscribe to the belief that there's something wrong with being deaf. So they make it their business to try to fix it, hoping to ultimately wipe it out from humankind.

But those who are culturally deaf are worried about the future of their language and their way of life, both of which are beloved to them. I can identify with their fears, because I was born deaf to an all-deaf family. American Sign Language is my native language. I graduated from the Minnesota State Academy for the Deaf, where I enjoyed a rich education. I went to Gallaudet University, the world's premier institution of higher education with a mainly deaf student body. It was where my parents met and where I fell in love with a deaf woman who is now my wife. Although our three sons are hearing, ASL is their native language, and they are members of the signing community as much as we are. I love being deaf and would not change it for the world.

Like many deaf people, I don't consider deafness as an impairment. Yes, there is discrimination and there are social notions and attitudes that disable us. But I grew up in a culture in which we understood that deafness itself is never the problem. If there was a problem, it always lay elsewhere: in lack of access, denial of civil rights, or narrow rules and definitions. I have found this perspective to be true. Not even my becoming blind has changed the way I embrace this so-called disability as natural.

And not merely natural. It may even be vital to the human race. Homo sapiens have always included a broad range of shapes, colors and other variations. While societies have established different expectations for what the human ideal is, all efforts to enforce one kind of normalcy or another have led to disaster and failed. No matter how misfits, defectives and the afflicted may have been demeaned, rejected and massacred, they have always been inextricably wrapped up in the mainstream. Shouldn't we be thankful for the diversity that evolves among us, instead of arbitrarily deciding that one thing is normal and another is not?

What would our literature be without the blind poets Homer and John Milton? What would music be without Beethoven? What would the lovely French language be without the deaf poets who launched the modern French vernacular? What would we do without the inventions of Thomas Alva Edison? And the thermos of coffee you are holding while you read this wouldn't have been possible without a prototype created by a deaf-blind man, James Morrison Heady. It was deaf students who inspired their teacher to invent the first typewriter -- he wanted to find a way for them to write as fast as they finger-spelled! The telephone -- I'd better stop here before the list gets too long. Disability has shaped our world, along with other forces, and continues to touch everything around us.

Considering all of the above, I have to wonder if humankind can afford to eliminate deafness or stop it from running its biological course. I think the answer is no. Why not? Because when there are no more deaf people, should that day ever come to pass, there will also be no more human beings as we know them today. If the medical industry succeeds in eradicating disability and perfecting the human race, it would have done something even more fatal. Already, millions of people who have no disabilities are demanding to be reshaped and remade. They are not satisfied with being merely well; they want to be better than well. I think this is a dangerous desire with potentially devastating consequences.

So I'm not going to worry about whether or not my community will disappear. I am confident that we deaf people will be around for as long as normal human beings are around. That is because the two are the same: Inherent in what it means to be human is a wealth of possibilities that includes my deafness and blindness. Narrowing down the possibilities would limit the human resources -- languages, skills and creativity born in diversity -- available to the world. Isn't this cause for real alarm?

John Lee Clark is a deaf-blind writer from St. Paul whose work has appeared in many publications. His chapbook of poems is "Suddenly Slow" (Handtype Press, 2008).

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