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 choice?