Taking the Stares

Every parent of a child with special needs has experienced the moment a thousand times. It happens on the street, in grocery stores, and on playgrounds. The forced smile. The second glance. The stare.

My daughter Magdalena has Down syndrome. Pushing her stroller around our Upper East Side neighborhood, it’s impossible not to notice the looks she gets. I once remarked to my wife, that “women check out babies the way men check out women.” I don’t think she loved that analogy, but I don’t remember her arguing with me either.

More often than not, when oncoming pedestrians lower their eyes for a passing peek into Magdalena’s stroller, their eyes dart away just as quickly. Instead of softly smiling and raising an eyebrow as if to say “Isn’t she adorable,” they behave much as you do when accidentally opening the door of an occupied bathroom.

Why do otherwise normal people panic when we they see my daughter on the street?

Perhaps it’s because the disabled challenge the neat little worlds we’ve constructed for ourselves. There is no Down syndrome in Carrie Bradshaw’s New York. There is no autism on Gossip Girl. Outside of the odd Lifetime special, there are rarely depictions of disabilities of any kind in our media. I once saw an episode of So You Think You Can Dance featuring a performance by a vision-impaired young woman. The show’s judges began by critiquing her audition in a reasonably fair way. But the segment concluded with one judge in tears. The music swelled as they thanked her for her courage.

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In the past, children born with lifelong disabilities were routinely institutionalized. They were whisked out of sight, often right from their mother’s arms. For years and years, this quarantine worked to spare most of us the icky feelings we get around the physically and mentally disabled.

We have come along way since those days. In a strictly legal sense, our society has adopted an extraordinarily accommodating approach to educating and integrating children like Magdalena. Instead of languishing in homes for the “mentally retarded,” our children are learning in mainstream schools, receiving Early Intervention therapies, holding down jobs, and, sometimes, living on their own. In many respects, the disabled have earned the opportunity to live normal lives.

Yet while it is relatively easy to change laws, it is notoriously hard to change minds. That requires time. Unfortunately for the Down syndrome community, time may be running out. Due partly to the increased efficacy of pre-natal genetic tests, the actual number of people with Down syndrome is falling. Down syndrome has long been associated with women over 35 years old. In the past, doctors didn’t typically recommend screening pregnant women under that age. Last year, however, the American College of Obstetricians and Gynecologists recommended offering Down syndrome screening to all pregnant women, regardless of age. The recommendation sparked much debate and consternation among families of children with Down syndrome. Do these new guidelines mean our children, and their disability, will soon become a vestige of the past?

Should we be trying to get rid of Down syndrome?

Don’t get me wrong. My wife and I found the pre-natal diagnosis we received inordinately valuable. Yes, we cried. A lot. Yes we were despondent and confused. Like any parents, we had imagined nothing but happiness and perfection for our family. Now, we were frightened at the prospect of raising a child who might need to live with us forever. Having the diagnosis prior to delivery allowed us to digest the situation, to prepare ourselves, to enjoy the miracle of Magdalena’s birth.

But we know we are in the extreme minority. Some estimates put the abortion rate for fetuses with Down syndrome at greater than 90 percent. According to these statistics, in a group of 10 parents receiving the same news, we would be the only ones taking the pregnancy to full term. While I am not aware of any scientific studies attributing the increasing rates of abortion to increased testing, the correlation between the two seems pretty apparent. And let’s face it, there are less people with Down syndrome walking around these days than there used to be.

When I watch the reactions of people in my neighborhood to my beautiful baby girl, I can’t help but wonder where this is all heading. Will there one day be a genetic marker for autism? For cancer? For homosexuality? Will parents choose to “terminate” these pregnancies in similar numbers?

If so, what kind of world are we heading for?

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