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.
Those who do not have a family member with a disability are addressing an abstract in their ‘quality of life’ arguments. They do not interact with a real person to reify the abstract into objective reality on a daily basis. I have a fifty year old brother with Downs Syndrome. I am his guardian and our family has cared for him with minimal help from the state, and contrary to the advice of the doctors to institutionalize him, as was the ‘solution’ back in 1962. My brother is happy and harmless to others. He is not less human or less valuable because of his disability.
Others simply aren't.
My husband drove a special needs school bus for a while, and half the kids he picked up were in foster care. And what he saw of some of the foster parents was disturbing. When they brought the kids out to the bus (if they were energetic enough to do that), there were no loving "be good in school and see you later" endearments. It was sad.
Who ever said we were promised 100% "PERFECT" children???
So true. Because if everyone in your family save Penny were to suffer some terrible tragedy it would be on the rest of society to take care or someone who isn't capable of taking care of herself.
As harsh as that might sound, I actually commend you for taking on such a responsibility. When my wife and I were expecting our 1st we had long conversations about what we would do if the prenatal tests came back with anything less than "normal". I didn't know the answer then, and I don't know the answer now. I only know that I'm grateful that I never had to make a choice.
My partner agrees with the right to choose termination, but clearly said I would be supported however I felt at the time. Having that support is priceless. Having the right to choose is priceless. I don't judge people for choosing to have a special needs child, nor do I judge them for choosing to terminate. It's the right of the husband and wife to choose what is best for their families.
If you are happy with your child, then fine. But that shouldn't mean that everyone should be happy to have a child with physical and mental deficencies so severe that they cannot function normally. And what of the child who is affected by such things? How is it fair to them?
I'd be pretty upset if I knew that my child's daily schooling was continually interrupted by her teacher having to give another student a sticker every ten minutes! What is this doing to the class as a whole? The author demands diversity yet at the same time expects special treatment as her due. This is quite an attitude of entitlement; she seems to think everyone around her needs to act a certain way and behave a certain way to accomodate her Down Syndrome daughter.
two days before my daughter was to be delivered via c-section, the doctor informed me that she would not be
able to deliver my daughter due to possible complications that as far as I am concerned she would have been well aware of since the amnio testing. Needless to say the people that sue the doctors or the hospitals because their children were born with disabilities that were unforeseen, were just really shopping for the stovetop range that would match the dishwasher and refrigerator. I really hope that their blinders come off some day and they see their gift for what she is.
It's unfortunate that the claim is called "wrongful birth," but that's just the courtroom terminology. This is just another family, like yours and like mine, that is doing the best it can to care for a child who has extraordinary needs.
It's a shame these suits picked up the designation of "wrongful life," but it does speak to the necessity of providing as much information as possible pre-natally. (Yes, I know the tests aren't foolproof and some are better than others. That doesn't absolve anybody of their obligation).
On a side note, it really irritates me to hear the "happiest person I know" argument. Most of the time it comes off sounding like they're talking about a puppy.
When you choose to have a child there's a risk that the child might have medical problems. While I think we should provide support to parents with DS kids, I don't think it's fair to put blame on the doctor or even the lab.
No need to apologize to anyone. I would never bring a disabled child into the world either, and I would never apologize to anyone for that.
We should all be free to make our own choice about that.
I have been a lifelong pro-choice supporter but it is attitudes like this that really make me think. As a father of a son with Down Syndrome you are basically saying to me and anyone else out there that our kid's life is somehow worth less than a "normal" child. What a tragedy it would be if your life plan somehow didn't work out. Here's a newsflash, nobody's plan works out. Good luck
Now, undoubtedly things can be missed by even the most experienced eyes. Sometimes they're just hidden in a way doctors cannot identify. What I'm talking about is not that. But rather cases where other can clearly see the problem, where a woman's doctor missed it. The suit would be called wrongful life, but really…the course of that child's life could have been changed had the doctor acted correctly.
What is scary to me, are laws like the one in Kansas giving doctors the OK to lie (LIE!!) about ultrasounds. Perhaps to prevent wrongful life suits (which in the case of DS and a child someone loves, also baffle ME…the message to the child alone wouldn't be worth money to me)…but this opens the door for doctors to lie for moral reasons even in cases where parents would not abort, but would rather seek advanced technologies to help improve their child's life even before they're both. I think people are far too litigious this days…but laws like this are harmful in so many ways.