Life with Down Syndrome: Good or Wrongful?

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.

About Amy Julia Becker

Amy Julia Becker writes and speaks about family, faith, disability, and culture. A graduate of Princeton University and Princeton Theological Seminary, she is the author of Penelope Ayers: A Memoir, A Good and Perfect Gift (Bethany House), and Why I Am Both Spiritual and Religious (Patheos Press).

Comments

  1. I read an article recently that helped me with the concept of “wrongful birth.” It said, “Right now, there’s no way for parents to seek damages for negligence in prenatal testing without arguing that, had they received accurate results, they would have sought an abortion. The way to fix this is to change the law to make negligent doctors accountable without forcing their misled patients to publicly regret the lives of their children.” (http://www.thedailybeast.com/articles/2012/03/14/the-legal-claims-of-wrongful-birth-vs-the-right-to-lie-over-abortion.html)

    So, in addition to disability services, there may be a need to push for parents ability to receive damages for botched prenatal test results in order to take the concept of “wrongful birth” off the books.

    • Would the argument be that prenatal testing would have allowed the parents to financially prepare for the birth of a disabled child? That gives the parents less than 9 months to make these financial preparations, so that argument doesn’t hold much weight. Plus, how can you quantify the costs of caring for the disabled child, when these costs cannot accurately be counted until the child is born (and in some cases not until they are 2-3 years old or older). That leaves you damages for emotional pain and suffering, but again that means parents have to claim that their child’s birth was an emotional burden.

  2. I have a concern that society’s stereotyping of and prejudice against individuals with disabilities takes away from a parent’s ability to make an informed decision. When much of society views individuals with disabilities as a “burden,” then a parent informed that their child has Down syndrome might choose to abort without actually knowing the full story. Before making that decision, expectant parents should talk with parents of Down syndrome children. Then they can make a more informed decision.
    We, as a society, are horrified by parents wanting to abort based on gender, but support abortion based on an extra chromosome. As a big supporter of community living and parent of a daughter who has Down syndrome, I worry about how society will value the life of my child if it embraces the abortion of people similar to her. It makes me sad and angry and drives me to spread the word even more about how an inclusive and empathetic community makes the world a better place.

  3. Watkins Jenni says:

    My grandmother’s daughter (my aunt) has down’s syndrome. My grandma told me when I was pregnant with my daughter that if I found out she had down’s syndrome, I should abort her. She doesn’t have the disorder (we never did testing to find out), but I found this request by my grandma unsettling. Yes, she loves my aunt more than most people could imagine. Does she wish she were never born? Probably not. But life in 1950s with a Down’s kid was hard. The neighbors wouldn’t let their kids play with her for fear they could “catch” something. It isolated her from having women friends, and after her husband died, it prevented her from remarrying. It’s hard for me to understand her point of view now, because the resources for, and acceptance of these kids is amazing. I would certanly never “get rid of” a baby with Down’s syndome.

  4. Hozfamily says:

    Everyone needs to look around them. There are alot of people who do not have disabilities and are a lazy waste of a life and a drain on our tax dollars because they refuse to be productive citizens in our community. Some people have mental disorders. Can that be tested? These kinds of disorders may not even be detected till later in life. Maybe a person is fine untill they suffer a traumatic emotional or abusive experience that causes them to be disabled. Maybe they suffer a brain injury. We use to put these people in institutiuons. Hitler called them “useless eaters” and in 1939 they were the first ones he killed (befor he even started on the Jews). He was looking for the perfect human and in his mind, all others that were less then perfect, needed to be exterminated. Who are we to decide who lives and dies. I would take my disabled friends (over some non-disabled people I know) any day. But I would never believe in killing them. We all need to ask ourselves when we incounter these situations… What do I need to learn from this? How can I help? What if it were me? When I was introduced to this special population, I learned how selfish I can be and it made me a better person that began to value all life. Judgemental??? How judgemental is it that one person should JUDGE weather another person should live or die. (Tried to post on the HuffPost as a response, not sure if it was or not)

  5. Thanks Amy for your article. I ,too, am saddened and sickened by this idea of “wrongful” death lawsuits. I have a child, who is currently bouncing a huge yoga ball around the living room. She makes me start my everyday with a huge sleepy hug. She is totally irresistible to me, to my husband, and to her two siblings….we just cant get enough of her. Yes, she is imperfect ( who isnt?) and having her tag along on any errands that are “boring” to her takes extra efforts and refined skills in parenting. But she makes me become better as a parent at these things. She also fills me and each one of us up with love, laughter and a real joy that I cant imagine my life without. Yes, she has down syndrome. But thats not what makes her so funny and lovable, or does it play a part in all of who she is? I don’t know. I just wouldn’t want to change a thing about her, or about who we are as a family. I feel lucky she was born now, at a time when our society is beginning to see, accept and believe in what life can be like for people with down syndrome…. who are “allowed” to be born, to live with their families, to go to school with their sibs and neighbors, to actually learn academics, and to do what they want to do: to work, play, love and give to others. You cant put a price tag on all the ways each person touches another’s life in these most meaningful ways.


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