One mother described being asked by a psychiatrist how she got on with her son
with Down syndrome; when she replied, "Terrific," he said that there was no need
to be defensive. Marca Bristo, who chairs the National Council on Disability,
said, "Singer's core vision amounts to a defense a genocide."
By 2000, the resistance to prenatal screening from the
disability rights camp had crystallized. Disability scholars Adrienne
Asch and Erik Parens, in their seminal discussion of the problem, wrote,
"Pre-diagnosis reinforces the medical model that disability itself, not
societal discrimination against people with disabilities, is the problem to be
solved."
Prenatal genetic testing followed by selective abortion is really
problematic and it is driven by misinformation." A few years later,” Asch wrote,
"Researchers, professionals, and policymakers who uncritically endorse
testing followed by abortion act from misinformation about disability, and
express views that worsen the situation for people who live with disabilities
now and in the future."
Leon
Kass, chairman of the President's Council on Bioethics under George W. Bush, has
argued that we "treat" prenatally diagnosed illnesses by "killing rather than
tending to those who would develop them." Preventing births of any subclass of
people devalues them. A society where fetuses with Down syndrome are routinely
aborted clearly believes that DS is a grave misfortune. This does not mean that
anyone hates or wants to slaughter people with DS; indeed, many people who would
choose to terminate a DS pregnancy would also go out of way to be kind to a
living person with the syndrome.
But
I know from personal experience how kind sympathy can be a noxious prejudice; I
do not care to spend time with people who pity me for being gay, even if their
sympathy reflects a generous heart and is offered with egregious politesse.
Asch
claims that women abort disabled fetuses because of the woeful lives that would
come of their pregnancies; that such woe is the product of chauvinism; that such
chauvinism could be resolved. Janice McLaughlin, at the University of
Newcastle, wrote, "Mourning the choice the woman is compelled to make is not the
same as saying she is wrong or an active participant in discrimination. Instead
it points to the ways in which she, too, is a victim."
But
the acts of women do not merely reflect the society; they create it.
The
more pregnancies are terminated, the greater the chance that more will be
terminated. Accommodations are contingent on population; or ubiquity of
disability keeps the disability rights conversation alive at all. A dwindling
population means dwindling accommodation.
Of
the 5,500 children born with DS in the United States each year, about 625 are
born to women who had a prenatal diagnosis, " One doctor assured Tierney Temple
Fairchild, who had a prenatal diagnosis, not to terminate. “Almost everything
you want to happen will happen. It's just going to happen at a different
schedule."
This
is untrue.
A great deal does not happen on any schedule for people with DS. The
remark was nonetheless helpful to the family in deciding keep their child, and
they didn't have amnio in subsequent pregnancies. "I had a choice and I chose
life," Fairchild wrote. "Does that make me pro-choice or pro-life? Our political
parties tell us we can't have it both ways. I chose life, but I am thankful I
had the choice."
Like
deafness and dwarfism, Down syndrome may be an identity or a catastrophe or
both; it may be something to cherish or something to eradicate; it may be rich
and rewarding both for those whom it affects directly and for those who care for
them; it may be a barren and exhausting enterprise; it may be a blend of all
these. “I’ve never seen a family who chose to have the baby and then were
really sorry Gregoli said.
There
is a strong movement to connect expectant mothers with a prenatal Down’s
diagnosis with families bringing up with DS. Many parents have written memoirs
expressing the rewards of raising such children, contending that there is less
to complain of in Down syndrome than in the attitudes of the world. Of course,
people who dislike having children with DS don’t tend to write memoirs; neither
do those of low socioeconomic status, for whom the obstacles to good treatment
may be daunting.
My
own observation is that some parents manufacture an affirmative construction of
their child’s disability to disguise their despair, while others have a deep and
genuine experience of joy in caring for disabled children, and that sometimes
the first stance can generate the second. I met disability activists who
insisted that everyone’s joy was authentic, and I met psychologists who thought
no one’s experience was. The truth is that while some people fall at either end
of this spectrum, most are scattered across its wide span."
Andrew Solomon,
Far From the Tree
You cannot force women
to bear Down Syndrome children but you can give a better picture of what having
a DS baby may mean as well as what the evils of abortion may mean to your life.
Far too little of either story gets out so that meaningful decisions can be
made.
Sem comentários:
Enviar um comentário