A friend of mine here at the Walter Cronkite School at Arizona State University sent me this thought-provoking story about the deaf subculture. She is very smart and obviously saw the moral and ethical disability conundrums that are wrapped up in a frighteningly untidy ball here.
The story discusses the controversy and cultural issues raised by the increasing availability of cochlear implants which many in the deaf community fear will destroy the deaf subculture. The story points out that many deaf people are passionate about their culture and many are critical of people who choose hearing over living a soundless life with sign language.
I really can’t discuss that phenomenon because I am not deaf nor do I have a deaf family member. I can’t imagine being unable to hear the sounds of the earth and the workplace, but most of us can’t imagine dealing with a different disability.
Where the debate inevitably takes me is to Down syndrome. In my book, “Some People Even Take Them Home” A Disabled Dad, A Down Syndrome Son and Our Journey To Acceptance I write in the acknowledgements section of the book: “I have no intention of entering the hot button arena of abortion, but I can say unequivocally that I believe our world would be an inferior place if there were no Down syndrome children. The pursuit of the perfect baby would deprive our world of real joys and triumphs.”
Believing that aborting all children with Down syndrome is wrong and would diminish our society is a ridiculously easy place to stand. People with Down syndrome, like my 35-year-old son Jason, do deeply enrich our world just as deaf people do. I ardently believe all diversity makes our world richer and gives it genuine texture that can be celebrated.
But, for argument’s sake, let’s say there was a pill that immediately fixed Down syndrome. And, what if, like the cochlear implant, there was some chance it wouldn’t work. Would I hang on to my diversity argument or would I move mountains to get that pill for Jason to allow him a chance to live a more normal life?
Again, for me, I’d step all over people to get Jason that pill and the “Down syndrome culture” be damned. Certainly our society would lose something important, but how could I possibly deny Jason all the joys that come with normal intelligence?
One of the arguments of people who oppose cochlear implants is that it implies deaf people need to be fixed and they resent that. That argument bothers me because a lot of us have twisted limbs, cancer or a score of other maladies that get “fixed.”
I cannot walk in anybody else’s shoes and I don’t have a deep understanding of the deaf subculture or cochlear implants so I will never criticize anyone in that community, but if I could fix Jason’s Down syndrome with a pill you would see nothing but a blur.
Tim J McGuire is the author of “Some People Even Take Them Home” A Disabled Dad, A Down Syndrome Son and Our Journey To Acceptance