The Creepy And Horrible Notion That Deaf People Owe It To Other Deaf People To Stay Deaf
Teresa Blankmeyer Burke, at Impact Ethics, "considers the problematic nature of gene therapy research aimed at eliminating hereditary deafness."
But beyond the possibility of medical risk -- which is rightly investigated and weighed -- there's this:
Members of the signing Deaf community argue that research which aims to eliminate or cure deafness is a form of cultural genocide. The argument goes like this: the use of gene therapy to cure hereditary deafness would result in smaller numbers of deaf children. This, in turn, would reduce the critical mass of signing Deaf people needed for a flourishing community, ultimately resulting in the demise of the community.
How completely barbaric. As Kant wrote, people are not means to an end but ends in themselves. No individual owes it to a community to remain less functional.
And check this out from Burke's piece:
The majority of deaf children are born to hearing parents in families that have taken up the values and norms of a society constructed for Hearing people. Most of these deaf children are not given a choice about whether to pursue their bimodal and bilingual birthright - that choice is made for them by their culturally Hearing parents.
If you wish to stop hearing temporarily, you can do as I do and wear earplugs and asshole-canceling headphones. You can even learn sign language, as I did in fifth grade, when I volunteered with deaf kids at my elementary school.
The "cultural genocide" link goes to this Harlan Lane academic paper in the Journal of Deaf Studies and Deaf Education. The abstract:
This article is concerned with ethical aspects of the relations between language minorities using signed languages (called the Deaf-World) and the larger societies that engulf them. The article aims to show that such minorities have the properties of ethnic groups, and that an unsuitable construction of the Deaf-World as a disability group has led to programs of the majority that discourage Deaf children from acquiring the language and culture of the Deaf-World and that aim to reduce the number of Deaf births--programs that are unethical from an ethnic group perspective. Four reasons not to construe the Deaf-World as a disability group are advanced: Deaf people themselves do not believe they have a disability; the disability construction brings with it needless medical and surgical risks for the Deaf child; it also endangers the future of the Deaf-World; finally, the disability construction brings bad solutions to real problems because it is predicated on a misunderstanding.
Sorry, but deafness means you are less able than people with hearing to function in the world. I grew up with deaf kids, and a friend of mine is somewhat deaf. She often cannot hear conversations, despite having a seriously high-tech hearing aid. This means, if there's a dinner at a loud restaurant, she's effectively just sitting there much of the time.
She doesn't want to be part of any "deaf community." She just wants to be a part of conversation in the greater human community.
Check out the outrageous argument made here by deeming deaf people an ethnic group (from Lane's paper):
Among the biological means sought for regulating and, ultimately, eliminating Deaf culture, language, and people, cochlear implants have historical antecedents, then, in medical experimentation on Deaf children and reproductive regulation of Deaf adults. There is now abundant scientific evidence that the Deaf-World has the properties of an ethnic group. Many Americans, perhaps most, would agree that society should not seek the scientific tools or use them, if available, to change a child biologically so he or she will belong to the majority rather than the minority, even if society believes that this biological engineering might reduce the burdens the child will bear as a member of a minority. Even if children destined to be members of the African American, Hispanic American, Native American, or Deaf American cultures could be converted with biopower into white, Caucasian, hearing males--even if society could accomplish this, it should not.
Here lies the answer to bioethicist Dena Davis, who has argued that it would be wrong to withhold a perfect implant from a Deaf child, for the Deaf-World is a limiting one and withholding the implant would be to reduce the child's possibilities in life; it would violate the child's right to an "open future" (D. S. Davis, 1997, p. 256). It is true that minority members frequently have a less-open future than majority members; yet, we all would agree that surgery sought to help a child "pass" as a member of the majority, or simply to facilitate learning the majority language, is unethical. Why does Davis endorse such surgery on the Deaf child but not on the black one? Because she continues to see the Deaf child as disabled.
I'd like to "pass" as a person who does not get car sick from a trip a few miles across town. I also worked very hard to "pass" in the TED talk I gave -- as a person who does not have ADHD and the speedy speech and all that goes with it.
Likewise, not having full access to the ability to hear isn't something to celebrate; it's something to fix so a person can have full access to the opportunities available to the hearing.
The ADA might make a movie theater put on closed captioning -- or force Berkeley to make their free public documents unavailable to all because they aren't unavailable to the disabled -- but that doesn't make a good many of the opportunities available to hearing people available to those who are deaf.