It was the most heart-wrenching moment of our lives, and all I could do was stare at the tissue box.
A week earlier, my pregnant wife, Jennifer, had undergone a routine prenatal ultrasound that revealed “soft markers” suggestive of genetic abnormalities. Now we were in the consultation room awaiting the results of the amniocentesis, which would conclusively determine whether our daughter would be born with Down syndrome.
Of course they don’t put you in the room with the industrial-strength Kleenex just to tell you everything’s going to be fine. After the doctors gave us the news, they casually told us how an in utero diagnosis of Down syndrome meant perhaps a 50-50 chance of miscarriage or stillbirth.
If our daughter somehow made it to full term, her expected life span would be far shorter than a typical child’s, and she’d most likely have a whole host of medical issues requiring a lifetime of medical care. Then consider the cognitive impairments, special education programs and social ostracism. It was a lot to take in.
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Hammering home the momentous difficulties that would await us as parents was clearly a tactical move by the doctor to push us toward an abortion.
That abortion is not the exception, but rather the expectation in cases of Down syndrome, is not limited to medical professionals. Though precise numbers are unavailable, at least two-thirds and as many as 90 percent of fetuses found to have Down syndrome in utero are aborted. Public opinion polls show that Americans are significantly less critical of abortion in the case of mental or physical impairment. Even the Dalai Lama says it is understandable.
So it raised eyebrows when we – a couple of pro-choice liberals – informed our doctors that we had chosen not to terminate the pregnancy. There was pushback: Did we not understand the decision?
We were sure that we’d love and care for our child regardless of her abilities. Today, despite complications and frustrations beyond those of raising a typical child, Sophia is an exuberant 8-year-old, soaking up the last rays of summer fun before entering third grade.
We have never had second thoughts, even though we understand why some parents might choose otherwise. Which is why it was particularly distressing to learn that this fall Ohio is likely to become the second state (after North Dakota) to outlaw abortion after an in utero diagnosis of Down syndrome.
The Ohio bill may be just the latest maneuver by pro-life conservatives in their war to curtail a woman’s right to choose. But as my wife and I learned, when it comes to abortion and special needs, there is no easy answer – and the idea that these deeply personal ethical and social decisions could simply be legislated away is ridiculous.
Both conservative lawmakers and their liberal opponents have surprisingly little understanding of the special-needs theater of engagement they’ve stumbled into.
For one thing, conventional pro-life versus pro-choice debates quickly become tinged with overtones about “slippery-slope” genocide, predicting the eventual disappearance of people with Down syndrome as a group. Such claims are often hysterical, but they’re not ungrounded: As our ability to screen for “undesirable” genetic traits expands, so does the potential for abortion based upon those characteristics.
Importantly, the conventional social dynamics around abortion are completely reversed. Among the families of people with disabilities, you'll find ardent pro-choice advocates (like my wife and me) who choose not to abort. And with a vast majority of diagnoses ending in abortion, you’re likely to find many strident pro-life conservatives opting for abortion in the face of such challenges.
This doesn’t mean these people are hypocrites. Rather, it shows how tricky the issue is. In a typical pregnancy, women who choose to have an abortion are often saddled with shame and social stigma, even from friends, relatives and the broader public. Meanwhile, despite recent strides, there remains significant stigma associated with being the parent of a child with special needs.
In the end, my wife and I chose to have Sophia. We had to fight for her in the face of widespread medical and societal pressures to terminate. And that was our choice.
The Ohio bill would do away with that choice, forcing everyone placed in that unenviable situation to carry to term a child with developmental disabilities, regardless of their willingness and ability to love and care for that child once it is born.
At the same time, Republicans are pushing to slash assistance programs like Medicaid at the federal level and gutting home-based care and other services in Ohio that offset at least some of the tremendous medical and financial burdens placed on families of children with disabilities. Even if it somehow cleared the insurmountable constitutional hurdles, the foreseeable long-term impact of this legislation would be increased stresses on the family, bankruptcies and an influx of children with disabilities into orphanages and foster care.
Perhaps if Ohio’s Republican legislators grappled with such difficult decisions and their consequences, they might understand the futility and hypocrisy of imposing their abstract beliefs where they don’t conform to reality.
The New York Times
Mark Lawrence Schrad is an assistant professor of political science at Villanova University.