The final hour of Beyond Affliction: The Disability History Project
begins with what has become a common ritual of pregnancy in present-day
America: taking an ultrasound picture of the growing foetus. This program
is not about the technologies of testing and genetic screening, but about
the values that we -- doctors, genetic counselors, prospective
parents -- bring to the testing clinic. Long-standing cultural attitudes --
about illness and disability, about our expectations for pregnancy
and motherhood, about doctors' priorities, about health-care coverage and
the high-tech medical marketplace -- influence and shape
the way we react to test results and the choices we make.
Block remembers first being told that she was going to have twins and
being floored by the news. Then, several weeks later, she found out via ultra-sound
that one of her daughters would have a lifelong disability.
She and her husband quickly found themselves caught in a vortex, surrounded
by information and solutions made possible by new technology on the
one hand, and the responses of friends and family that grew
out of tradition on the other. What did it mean? How would they
reconcile their joy over their daughter's impending birth with their
fears for her future?
From contemporary ultra-sounds Block takes us back in time. Marsha
Saxton discusses what it was like to grow up with a disability in the
1960's and the messages she received about her value as a person from
her doctors and parents. Block then takes us back, through the vault
of a medical film historian, to The Black Stork, a 1917 silent film that
promotes eugenics and, in certain cases, euthenasia for infants born with disabilities.
Where did these attitudes and programs come from? What were their consequences?
Finally, we hear Eva and Leo Kittay, a mother and her son, read their
correspondence about meaning, value, and the love they share for their
profoundly retarded daughter/sister. They raise crucial questions: How
do we, as a society, reconcile the message that selective abortion sends
to people with disabilities with the emotional and material realities
of our own lives? What, Eva Kittay asks, is a life worth living?
The whole front of possibility sweeps forward at once. At the same time
as prenatal and genetic testing expand, doctors and educators are finding
that diagnosis doesn't always equal prognosis. And a few professionals
are rethinking how they foretell the future of people with disabilities.
Talking to his obstetrics students about dealing with families of
newborns with birth defects, obstetrician Dr. Alan Guttmacher tells
them "We need to make it clear that kids born with disabilities today
are going to have a different future than they had even fifteen years
ago. Talk to parents about this. If the opportunity is there, talk with
the grandparents. They remember a different world."
Like the rest of this series, Tomorrow's Children ends with more questions
than answers. The listener is left with a personal challenge, a strong
encouragement to ask themselves the questions we have been considering:
What are MY preconceptions about disability? Where do they come from
and how do they shape my attitudes and actions?