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onal reporting by Sarah Bryden-Brown
-TEXT- Two lesbians have up-ended debate on genetic
manipulation, reports Margarette Driscoll
A BABY'S first developmental check is an anxious day
for any parent. But when Sharon Duchesneau and Candy
McCullough took their daughter, Jehanne, for her
first check at three months they were both excited
and relieved to find she had passed -- in their
terms -- with flying colours.
The result of her hearing test is lovingly written
in Jehanne's baby book: ``October 11, 1996 -- no
response at 95 decibels -- deaf!''
Duchesneau and McCullough, an American lesbian
couple, are both deaf -- passionately, politically,
profoundly deaf -- and both hoped for a deaf child,
whom they felt they could guide and nurture with
more understanding than a child with normal hearing.
To maximise their chances they used a friend with
five generations of deafness in his family as a
sperm donor. Because Duchesneau is fourth-generation
deaf on her mother's side, the baby would have a
50-50 chance of being deaf.
Jehanne is now five years old, a happy, confident
child who enjoys dance, football and yoga.
Emboldened by their success, last year the women
decided they wanted another child; the same donor
obliged, and their son, Gauvin, was born last
November.
Once again, the first developmental check was to be
the moment of truth. Only this time, as Duchesneau
and McCullough learned that their son was, as they
had hoped, deaf, a reporter from The Washington Post
was sitting beside them.
The resulting story was supposed to strike a blow
for ``deaf pride'', in which the women would attempt
to explain their rationale for creating deaf
children and give insight into the close-knit,
silent world of the militant deaf community in the
US.
But if they expected to be hailed as heroines, they
were in for a rude shock. Ever since the Post's
story was published last week, condemnation has
rained upon the family home in Bethesda, Maryland.
It has come from politicians, moral philosophers,
mothers, even fellow members of the deaf community,
horrified that the couple should have ``designed
in'' a disability.
``It is a problem how you bring up a hearing child
in a deaf environment. But I don't think the answer
is to create a handicap,'' says Stuart Horner,
professor of medical ethics at the University of
Central Lancashire. ``It's not just the yuck factor
-- handicaps happen and we have to deal with them --
but I don't think man or womankind has any business
creating handicaps.''
Duchesneau, already exhausted from having a
four-month-old baby, sat up until 3am the other
night trying to work her way through a mountain of
emails. Given the lack of understanding about the
deaf community, the controversy is not such a
surprise, she says. Still, she and McCullough are
feeling bruised and under siege.
``It is saddening to see the negative comments and
the rush to judgment and condemnation of our
choices,'' she says, speaking exclusively to The
Sunday Times last week. ``It is disheartening that
many people seem unable to listen to this story
without filtering it through their own prejudices
about deafness, rather than listening with open
minds and learning from it.''
Duchesneau and McCullough have turned our
preconceptions upside-down. The debate about
designer babies had made the assumption that people
will want to create perfect babies; it never
occurred to anyone that couples might want to design
in disability.
But to Duchesneau and McCullough a deaf baby is a
perfect baby. They resent the implication that to be
deaf is to be inferior to someone of normal hearing.
Both are graduates and work as mental health
specialists and therapists to deaf people and their
families.
Duchesneau finds that even hearing parents of deaf
children have doubts about what is achievable:
``They're like, `Oh, you went to college! Oh, that
means my children can do that!' They're afraid the
child will be on the street selling pencils.''
Yet one of the charges laid against the couple is
that deafness will limit their children's chances of
success. ``It is a perfect example of how people's
attitudes, and not deafness per se, disable deaf
people. Success can be measured in a number of ways,
including happiness, career, earnings, family and so
on,'' says McCullough.
``Hearing status does not define success. Deaf
professionals work as doctors, lawyers, therapists,
professors, engineers. Like any good parents, we
want our children to have better lives than we do.
We just don't think that having hearing is a
prerequisite for that.''
Duchesneau and McCullough place themselves among
those who see deafness as a cultural difference.
``While being deaf is experienced as a loss by
people who become deaf later in life, for people who
are born deaf there is no loss,'' says Duchesneau.
``Being deaf is just a way of life. We feel whole as
deaf people and we want to share the wonderful
aspects of our deaf community -- a sense of
belonging and connectedness -- with children. We
feel we live rich lives as deaf people.''
Yet the reality is that the deaf are cut off from
mainstream society. One talks to them by telephone
through an elaborate system that translates the
spoken word into print on a screen. They type their
answers, read back by an operator. Email has done
much to improve communications but, even so, the
women's main hesitation about having a hearing child
was having to re-engage with the hearing world. Much
safer to stay cocooned among a supportive circle of
deaf friends.
But sooner or later their children will have to face
up to the hearing world. How will they do it?
Profoundly deaf, they will never hear a symphony or
marvel at birdsong.
But this applies to many deaf people; yet most cope
well because they learn to lip-read and speak.
Most parents use any bit of residual hearing they
can, enhanced by cochlear implants or hearing aids,
to encourage their children to pick up speech
patterns. (This has become such a point of conflict
that cochlear implant conferences often attract
protesters. A minority resents attempts to try to
make them ``normal''.)
Duchesneau and McCullough have decided against such
aids, even though Gauvin has some residual hearing.
Instead, the children will be taught sign language.
Their mothers say they can choose whether to wear
hearing aids later on but, as a result, they may
never learn to speak.
James Strachan, chief executive of the Royal
National Institute for Deaf People, says this is
both irresponsible and disingenuous. ``I wouldn't
encourage anyone to have a deaf baby if a hearing
baby were an option,'' he says. ``To deprive a child
of the technology that might develop speech and
language I find extraordinarily selfish. The early
years are crucial. By the time the child makes the
decision, it will be too late.''
Deputy director of Southern Cross Bioethics
Institute in South Australia, Greg Pike, says while
the decision is understandable -- considering the
position by some in the deaf community that deafness
is not a disability, rather a culture -- it
nevertheless remains a restriction of the child's
opportunities. ``If hearing is an ability then
deafness is a disability,'' he says. ``Any
deliberate choice of a disability for a child is not
in the best interests of the child.''
Australian professor Graeme Clark, who investigated
the possibility of a cochlear implant in 1967 and
later led the team which engineered its design and
development, is overseas and unavailable for
comment.
The Australian Association of the Deaf refuses to
comment, issuing a statement from its president,
Robert Adams. ``AAD is concerned about the lack of
understanding demonstrated by media commentators
about the Australian deaf community, its culture and
the importance of this culture to its members.
``The deaf community is indeed a microcosm of the
wider community. It goes without saying that there
will be deaf people who are in favour of this action
and others who are not.''
The Sunday Times
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