Page 149 - Battleground The Media Volume 1 and 2

1 | D sab l t es and the Med a

Katherine McCarron, is mentioned, as is Alison Tepper Singer, senior vice
president of Autism Speaks, an organization that seeks to provide information
about autism and raise funds for research. Autism Speaks featured the Autism
Every Day video on its Web site, http://www.autismspeaks.org, and showed it
at fund-raising events. Tepper Singer is herself an autism mother who, in the
Autism Every Day video, talks about wanting to drive off the George Washing-
ton Bridge with her autistic daughter. Many autistic persons and families with
autistic children have reacted with outrage and disgust to Singer’s statement and
have even drawn a connection between her and Karen McCarron. Thierry called
Singer “gutsy and courageous” and noted that “you don’t say stuff like that—
camera rolling—unless you are truly ready to play ball with the entire world.”
My son, Charlie, is autistic and our family has been through every autism
experience including the “terrible” ones—the screaming at the doctor’s visits,
the feces where they shouldn’t be, the bruises, the dwindling bank account. But
these experiences are only so terrible as we choose to represent them as such.
While it is necessary to show compassion for parents who have difficult lives
and have made sacrifices for their autistic children, the majority of our concern
needs to start with the autistic child, with autistic persons, and to think about
how we represent them. Otherwise, we are only reinforcing myths and stereo-
types about autism. Desperation is one perception of raising a disabled child,
and not necessarily as fact, and to represent life with a disabled child as “desper-
ate” or a “tragedy” can have real repercussions.

rEPrEsEnTaTion anD PrEnaTaL gEnETiC TEsTing

The representation of disability matters because what people think about a
disabled person can influence decisions about having, or not having, a child
with a disability such as Down Syndrome. Due to new, less invasive screening
techniques—an ultrasound exam that can detect whether a child might have
Down Syndrome as early as 11 weeks into pregnancy—the American College of
Obstetricians and Gynecologists (ACOG) is recommending that all women who
are expecting be screened. Previously, only women 35 years of age and older
have been routinely tested for chromosomal abnormalities in their fetuses. The
new ultrasound exam, a nuchal translucency test, measures the fluid that accu-
mulates in the back of a fetus’s neck: There is a “strong association” between this
thickening of the back of a fetus’s neck and Down Syndrome, and studies that
use this measurement along with two blood tests have been shown to detect 82
to 87 percent of Down Syndrome cases.
Parents-to-be who discover that they may have a child with a disability are
likely to consider the views of medical professionals and of medical and char-
ity organizations in making their decision to have, or not to have, a child. With
regard to prenatal testing for Down Syndrome, some professionals represent
life with a disability in a negative light. For instance, Dr. James Goldberg, the
former chair of the ACOG’s committee on genetics, notes that it is “not as
problematic” to lose a normal pregnancy as to give birth to a Down syndrome
child. Such a statement implies that a child born with Down Syndrome—that a