Life with Down Syndrome: Good or Wrongful?

Life with Down Syndrome: Good or Wrongful? March 17, 2012

Over the course of the past five years, I’ve read news reports of a series of “wrongful birth” lawsuits in which parents won millions of dollars for the ongoing care of their children. In each case, the parents claimed they would have had an abortion if they had known ahead of time about their child’s disabilities. There was Ana Mejia of Florida who was awarded $4.5 million after her son Bryan was born with no arms and one leg. And Ran Zhuang, of Boston, who received $7 million to care for her daughter Annie. Most recently, Ariel and Deborah Levy have made the news due to their successful lawsuit against Legacy Health Systems. Jurors awarded the Levys $3 million because, in spite of extensive prenatal tests, they did not learn during Deborah’s pregnancy that their daughter has Down syndrome.

As the mother of a child with Down syndrome, I could write an essay in which I criticize Ariel and Deborah Levy or question their devotion as parents or express sadness or outrage over their decision. But I can’t see what good that essay would do. We live in a culture where disability is on the one hand celebrated as a mark of human diversity (think of Becky on Glee) and even, in some cases, genius (think of Stephen Hawking or the movie My Left Foot). We also live in a culture where disability is viewed as an obstacle to be overcome through prenatal testing. In Denmark, for instance, free prenatal screening has led to such a decline in births of babies with Down syndrome that the Danish government predicts they will cease altogether by 2030. In the United States, fifty percent of babies with Down syndrome are aborted, and that number may well increase in light of recent advances in prenatal testing. Both Legacy Health Systems and the Levys themselves participated in a system that assumes life with a disability like Down syndrome is a life not worth living.

Ironically, for the thousands of babies born with Down syndrome each year, life is pretty good. And it seems to me that telling the story of that good life is the best response to these stories of wrongful births.

In recent years, many of the medical concerns associated with Down syndrome have been addressed. Heart surgeries, while still difficult, have become far more routine. Our daughter Penny’s procedure to repair a hole in her heart involved checking in at the hospital one morning and driving home with her twelve hours later. Decades ago, Penny might not have been included in a public school setting. But the Individuals with Disabilities in Education Act (IDEA) ensures that she has received various therapies–speech, occupational, and physical–since birth, and that she has a right to a public education from age 3 to 21. Yes, these services come at a cost to taxpayers, but inclusion enriches entire communities, not just the individuals with disabilities.

Penny walks to kindergarten every morning, carrying her pink backpack, waving to friends as she marches in the front door. It’s a challenge to have her in the classroom–her teachers have found that the best way to handle her is by awarding a sticker for every ten minutes of positive behavior all day long. But it’s also a delight. She leads the class in freeze dance. She comes home with kind notes from friends. She can read whole books out loud. She is learning to count to 100. She’s a very happy kid, and we are very happy to be her parents.

Some people decry prenatal testing as the advent of a brave new world of designer babies and the commodification of human life. Others praise these advances and look to the past as “the dark ages,” when babies born with Down syndrome and other abnormalities were routinely institutionalized. The truth of the matter is that throughout human history, most cultures have shunned and excluded individuals with disabilities. We used to lock them away. Now we give women the option of terminating their lives before they begin. But in light of medical, educational, and family supports, we now have an opportunity to become a culture that embraces individuals with disabilities.

In the end, I don’t understand what motivated Ariel and Deborah Levy’s lawsuit. Their attorney insists (and I believe him when he says it) that they love their daughter. They live in Oregon, a state that offers significant financial and practical support to families with children with disabilities. They have access to free therapies through Early Intervention programs and the public schools, to government-funded medical coverage, and, should their daughter need it as an adult, to further financial support if they continue to play a role as her caregivers.

I don’t understand, and yet I hope that anyone who feels outrage, sadness, or concern over their decision will respond not by pointing fingers but by taking action–voting for politicians who support social services for people with disabilities, advocating for inclusive classrooms in school, participating in community organizations that support people with disabilities, hiring individuals with disabilities. And I hope people will respond by telling stories that counter the public perception that might arise from a lawsuit like this one. As Penny, her family, and countless other individuals who know people with Down syndrome can testify, far from “wrongful,” life is good.

This post has also appeared on the Parents Page of the Huffington Post. Please click here to join the conversation (as you might expect, this post has generated some controversy) over there with your comments. I’d love for people to tell their own good stories in that public forum.

And check back in on Monday for my response to comments on Huff Po and some thoughts on how much money it really takes to raise a child with Down syndrome.

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