My daughter, like all kids, is a delight and a lot of work. Now 4, she talks nonstop, although her speech isn’t always comprehensible. She reads. She performs class conversations for me: “What does a cow say? Moo. Great work, Maybelle!” This evening she sang me “I’m Just a Girl Who Can’t Say No” from “Oklahoma!” (a song that, in my daughter’s case, is clearly untrue because she excels at saying no).
Maybelle has Down syndrome, a condition I knew almost nothing about before she was born. During the four years she has been alive, I have been repeatedly surprised by her curiosity, her individual sense of humor and how much she has accomplished. She doesn’t fit the stereotypes at all. For this reason, it is troubling to me that rates of termination for pregnancies where Down syndrome is identified are extremely high. The most recent research suggests that for every child born with Down syndrome, another is terminated. With the increasing availability of noninvasive prenatal tests that can take place within the first few weeks of pregnancy, many in the Down syndrome and disability rights communities fear that abortion rates will skyrocket, that a process often identified as eugenic will escalate, and that Down syndrome will essentially be eliminated — at least among those with the resources for prenatal testing and the desire to terminate.
That is why some parents of children with Down syndrome are celebrating the news that North Dakota has become the first state to outlaw abortion for fetal conditions like Down syndrome. One parent wrote that “it felt like a small victory seeing that abortions based on Down syndrome were banned — like saying, see, individuals with Down syndrome are valued and protected.”
But outlawing abortion is not a reasonable response to this situation. A woman who does not want to be pregnant won’t stay pregnant if there are any mechanisms in place for her to have an abortion.
As part of my research for a book on prenatal testing and reproductive decision-making, I have talked with women who terminated their pregnancies when they learned that the fetus had Down syndrome. For most of these women, abortion was an incredibly painful decision. These were wanted pregnancies in which the fetus was already identified as a child, and often even named.
Repeatedly women told me that they ended the pregnancy not because they wanted a “perfect child” (as one woman said, “I don’t know what ‘perfect child’ even means”) but because they recognized that the world is a difficult place for people with intellectual disabilities.
One woman told me, “The thing is I could not, in good conscience, from the get-go, know that my child has these setbacks in life.” Another identified adulthood as the challenge: “There is no part of caring for an infant or school-aged child with Down syndrome that we didn’t think we could handle. We chose to terminate mostly on the basis of our understanding of the challenges and quality of life he and our family would face if/when he lived to be over age 21: his middle age, and end of life.”
Another woman talked quite a bit about rape. She was assaulted as a child, she knew that the statistics for sexual abuse were high for people with intellectual disabilities, and she was determined that her daughter would not experience that, so that was one of the reasons she terminated her pregnancy. She referred to her abortion several times as “the protective choice.”
All these women grieved, but did not regret, their abortions. A state law banning abortion would not have stopped them from terminating their pregnancies, it would just have made an incredibly difficult process even more difficult for them. Indeed, more than one mother I spoke with traveled out of state for her abortion because the pregnancy was too advanced for her to have an abortion in her home state.
If North Dakota really does want it to be “a great day for babies in North Dakota” and wants to prove that “a civil society does not discriminate against people … for their sex or for disability,” it should make the state a welcoming place for people with disabilities. The state could take the cash reserves it has put aside for legal challenges to its laws and use those funds to train public schools to be meaningfully inclusive (as all the best research shows is the way to go). It could provide easily accessible medical care and early intervention. The state could develop independent — but supported — housing for adults with intellectual disabilities so that there are not waiting lists years long. It could improve criminal justice responses to rape — indeed, North Dakota could become a state that works to prevent rape by training men not to be rapists.
Let women have abortions for whatever reason they choose, but make it a world they would like to bring a child into — even a child with an intellectual disability.
Alison Piepmeier is the director of the women’s and gender studies program at the College of Charleston in South Carolina.
Outlawing Abortion Will Help Children with Down Syndrome
On the New York Times parenting blogs, a mother of a girl with Down Syndrome argues against North Dakota’s new law that outlaws abortion in cases of genetic abnormality. Alison Piepmeier says that “Outlawing Abortion Won’t Help Children with Down Syndrome.” The premise is that parents abort babies with Down Syndrome because their child will face untold challenges. Piepmeier writes about her conversations with women who aborted their children:
- Repeatedly women told me that they ended the pregnancy not because they wanted a “perfect child” (as one woman said, “I don’t know what ‘perfect child’ even means”) but because they recognized that the world is a difficult place for people with intellectual disabilities.
- One woman told me, “The thing is I could not, in good conscience, from the get-go, know that my child has these setbacks in life.” Another identified adulthood as the challenge: “There is no part of caring for an infant or school-aged child with Down syndrome that we didn’t think we could handle. We chose to terminate mostly on the basis of our understanding of the challenges and quality of life he and our family would face if/when he lived to be over age 21: his middle age, and end of life.”
Putting aside the data that shows that 99% of adults with Down Syndrome report being happy, I ask, “How can we improve the lives of those with Down Syndrome enough to not kill them if we keep killing them?” “How will research into improving the cognitive effects of Down Syndrome proceed if there are no patients left to treat?”
This is the same backwards approach to medicine that fuels the euthanasia movement. Instead of controlling the pain of terminal illness, the plan is to kill the patient. I guarantee that the more killing becomes the treatment plan, the less research into end-of-life pain control will advance.
When death is the treatment of choice, all other options fall by the wayside and wither.
Richard Doerflinger, in an address to the General Assembly of the Pontifical Academy for Life, makes this very point:
“In the Netherlands, Dr.Richard Fenigsen and others report that the spread of euthanasia as a solution to problems at the end of life has produced a generation of doctors who do not know how to diagnose the real problems accurately, let alone understand their appropriate treatments,” said Doerflinger.And this phenomenon is also appearing in prenatal care:
“Why would anyone devote himself to the difficult task of easing a patient’s physical pain, anxiety, depression and other problems if there is one infallible solution to every problem – that is, to eliminate the patient?”
To take another example, while abortion has been adopted as the de facto “treatment” for any sort of high risk pregnancy, “in cases where the woman rejects abortion, [doctors] no longer know what to do.” This has left a dwindling handful of experts with the skills set necessary to guide women successfully through high risk pregnancies, without deliberately taking the life of their babies.
I recently went to a presentation on high-risk deliveries at the hospital where I used to work. The presenting doctor admitted that since the rate of C-section has gone up, there are very few doctors who know how to deliver a breach baby without surgery. That particular expertise has been lost.
The same will happen with expertise and resources needed for those with Down Syndrome. The more the “treatment” of choice is death, the less options for those who make it out of the womb will thrive.
In addition, I believe that the continued wide-spread abortion of children with Down Syndrome magnifies an ever-increasing prejudice in our society.
So, I disagree with Ms. Piepmeier. Outlawing abortion will help children with Down Syndrome.
The proper approach to the difficulties faced by those with Down Syndrome and their families to address those difficulties. Killing them in the womb accomplishes nothing and in the long term will hurt the progress in research and limit the resources available. Treat the symptoms. Address the challenges. Don’t kill the patient.