Jewish World Review April 12, 2002 / Rosh Chodesh Iyar 5762
http://www.NewsAndOpinion.com | When Sharon Duchesneau gave birth on Thanksgiving Day to a deaf son, she was delighted.
Duchesneau and her lesbian partner, Candace McCullough, had done everything they could to ensure that Gauvin would be born without hearing. The two deaf women selected their sperm donor on the basis of his family history of deafness in order, as McCullough explained, "to increase our chances of having a baby who is deaf."
So they consciously attempted to create a major sensory defect in their child.
Scientists and philosophers have been debating the morality of new reproductive technologies that may allow us to design "perfect" human beings. Advocates dream of eliminating conditions such as spina bifida; critics invoke images of Nazis creating an Aryan race.
But what of prospective parents who deliberately engineer a genetic defect into their offspring?
Why? Duchesneau illustrates one motive.
She believes deafness is a culture, not a disability. A deaf lifestyle is a choice she wishes to make for her son and his older sister Jehanne. McCullough said she and her partner are merely expressing the natural tendency to want children "like them."
"You know, black people have harder lives," she said. "Why shouldn't parents be able to go ahead and pick a black donor if that's what they want?"
Passing over the problem of equating race with a genetic defect, McCullough seems to be saying that deafness is a minority birthright to be passed on proudly from parent to child. By implication, those appalled by their choice are compared to bigots.
Some in the media have implicitly endorsed their view.
On March 31st, the Washington Post Magazine ran a sympathetic cover story entitled "A World of Their Own" with the subtitle, "In the eyes of his parents, if Gauvin Hughes McCullough turns out to be deaf, that will be just perfect." The article features Gauvin's birth and ends with the two women taking him home. There they tell family and friends that, "He is not as profoundly deaf as Jehanne, but he is quite deaf. Deaf enough." The article does not comment critically on the parents' decision not to fit Gauvin with a hearing aid and develop whatever hearing ability exists.
The Duchesneau case is particularly troubling to advocates of parental rights against governmental intrusion. The moral outrage it elicits easily can lead to bad law - laws that may hinder responsible parents from using genetic techniques to remedy conditions such as cystic fibrosis in embryos. Selective breeding, after all, is a form of genetic engineering. The Duchesneau case, then, brings all other forms of genetic engineering into question.
The championing of deafness as a cultural "good" owes much to political correctness or the politics of victimhood, which view group identity as the foundation of all political and cultural analysis.
Disabled people used to announce, "I am not my disability." They demanded that society look beyond the withered arm, a clubbed-foot, or a wheel chair and see the human being, a human who was essentially identical to everyone else.
Now, for some, the announcement has become, "I am my deafness. That is what is special about me."
Society is brutal to those who are different. I know. As a result of my grandmother contracting German measles, my mother was born with a severely deformed arm. She concealed her arm beneath sweaters with sleeves that dangled loosely, even in sweltering weather. She hid.
Embracing a physical defect, as Duchesneau and McCullough have done, may be a more healthy personal response. Certainly they should be applauded for moving beyond the painful deaf childhoods they describe.
However, I remember my mother telling me that the birth of her children - both healthy and physically unremarkable - were the two happiest moments of her life. I contrast this with Duchesneau who, knowing the pain of growing up deaf, did what she could to impose deafness upon her son.
Deafness is not fundamentally a cultural choice, although a culture has sprung up around it. If it were, deafness would not be included in the Americans with Disabilities Act - a source of protection and funding that deaf-culture zealots do not rush to renounce.
But if deafness is to be considered a cultural choice, let it be the choice of the
child, not the parents. Let a child with all five senses decide to renounce or
relinquish one of them in order to embrace what may be a richer life. If a child
is rendered incapable of deciding "yes" or "no," then in what manner is it a
04/05/02: The professor made me cry, now I will make him pay!