Don't politicize my son over Down syndrome

David Perry with his children, Elisabeth (6) and Nicholas (8).

Story highlights

  • Ohio bill would ban abortions based on prenatal diagnosis of Down syndrome
  • Parent of Down syndrome child says it would needlessly politicize the issue, accomplish nothing

David M. Perry is a freelance journalist focusing on disability issues. He is author of the new book "Sacred Plunder" and is an associate professor of history at Dominican University. He writes regularly at the blog How Did We Get Into This Mess? Follow him on Twitter @Lollardfish. The opinions expressed in this commentary are solely those of the author.

(CNN)Ohio Republicans and anti-abortion activists want to use my son as a wedge issue.

When their Legislature returns in the fall, it will almost certainly pass HB 131 -- a bill that makes it a felony to perform an abortion based on a prenatal diagnosis of Down syndrome. Gov. John Kasich, who is competing for the GOP nomination for president, will certainly sign it.
David M. Perry
North Dakota passed a similar law in 2013, and at least three other states are considering related bills this year. We've seen this pattern before. Anti-abortion groups are incrementalists. They identify a specific procedure or group that they think will garner sympathy from moderates and use it as a wedge to chip away at the core protections of Roe v. Wade.
They've focused on third-trimester abortions, state funding for health care plans that provide abortion, hospital admitting privileges (in the guise of protecting the health of the mother, but really just trying to bury clinics in red tape), waiting periods, required consulting, and mandatory ultrasounds. When one tactic fails -- it turns out that lots of people object to the notion of a forced transvaginal ultrasound -- they abandon it and switch to another. Now it's Down syndrome.
Here are a few facts: Down syndrome happens at conception when an embryo develops an extra copy of the 21st chromosome, what's called a trisomy. There are lots of different kinds of trisomies (13, 18, etc.), each with a distinct range of medical outcomes, but trisomy 21, or Down syndrome, is by far the most common. Unlike many other conditions, genetic or otherwise, a trisomy is relatively easy to detect. Either there's an extra chromosome or there isn't (except in cases of mosaicism).
The ability to detect a trisomy has opened up a new, and troubling, world of prenatal testing. Amniocentesis can reveal a firm diagnosis in the second trimester (and carries a slight risk of miscarriage), but there are new screening regimes that locate placental DNA in the mother's blood and assess for trisomy. These screenings, though not 100% accurate, can be done much earlier.
All of this makes disability-selective abortion possible for Down syndrome in the way it currently isn't for other conditions. But technology is racing forward, and we need to figure out how to talk about these issues. The Ohio legislation's blanket ban isn't going to help at all, but even if it's enforced somehow, it could just lead women to lie about the reasons they aborted, or make Down syndrome code for poverty, when only poor people are forced to give birth after a diagnosis.
I'm the father of a boy with Down syndrome. I spend much of my life trying to make the world a better place for him. In doing so, I find common cause with liberals and conservatives from around the country, as we focus on issues like education, employment, and fighting stigma. Just last December, the otherwise do-nothing 113th Congress passed the ABLE Act, a widely bipartisan bill that permits people with disabilities to save a little money for expenses such as education and housing without losing key federal benefits. It's a great bill and couldn't happen without a coalition and trust across the partisan divide.
The use of Down syndrome as "a new front in the abortion wars," as The New York Times put it, threatens that trust.
Here's one example of the consequences of the wedge-issue approach. Around the country, we've been making real progress in attacking the misconceptions built within the prenatal testing regime. When people receive a prenatal diagnosis, they are often told things that aren't true, and this misinformation can naturally shape their choice of whether to terminate a pregnancy.
To counter this, a loose coalition of self-advocates (people with Down syndrome who work publicly on issues relating to disability), parents, ethicists, lawmakers, medical professionals and others has come together to ensure that women with a prenatal diagnosis receive accurate information. This "pro-information" movement draws allies from all backgrounds. Or did, anyway, because now the anti-abortion lobby has been targeting these bills as well, skewing legislation to serve its ends, and hijacking the movement. When a "pro-information" law forces doctors to conceal information thanks to anti-abortion activists, the coalition is dead.
Here's the most frustrating thing for me: There is so much to complain about regarding our prenatal testing regime, the way we talk about Down syndrome, stigma against all kinds of people with disabilities, the lack of educational and employment opportunities for people with disabilities, and more. There's lots of work to do. The best way to get people to choose to carry a fetus with Down syndrome to term is to make the words "Down syndrome" less scary. That's hard. It's not politically useful. So instead, we've got bills like HB 131 in Ohio.
Right now, people with Down syndrome are shattering our biases. It's not just high-profile feel-good stories about models, or superficial inspirational stories about prom queens and athletes "allowed" to score goals. Every day, I'm seeing people with Down syndrome learn, work, form relationships, perform service to others, set goals and surpass them, and generally accomplish things that 20 years ago would have seemed impossible.
That's where our energy should be going. If you want to help people with Down syndrome, don't politicize their births. Instead, get to work building a more inclusive society.