In the agonizing months leading up to this year's election, there was a lot of talk about under what circumstances, exactly, a woman should be able to have an abortion. Surveys of American political opinion consistently paint a picture of a population that is much more comfortable with the idea of abortion if women are having them for "good" reasons — her life is in danger, she was raped, she was a victim of incest. But people get slightly less comfortable with the idea of abortion when it comes to parents choosing to terminate a fetus because tests show it would grow into a child with a disability.
This has been an especially fraught issue in the Down Syndrome community. The latest dustup has been over the contents of a pamphlet issued to women after a positive prenatal DS diagnosis. According to blogger Matthew Hennessey, a battle over testing, abortion, and what information should be given to expectant mothers is forcing people who should by all rights be on the same team to battle one another.
Enter The Lettercase Booklet, a pamphlet with the endorsement of prominent doctors and medical groups and advocacy organizations. Since 2008, the pamphlet was the piece of literature given to women who receive a positive prenatal DS diagnosis. It mentions abortion thusly,
After receiving a prenatal diagnosis and learning more about Down syndrome, some families opt to terminate a pregnancy. An obstetric medical care provider, medical geneticist, or genetic counselor can provide more information about safe options in your area.
Because terminations can be associated with depression and symptoms of post-traumatic stress, some women appreciate resources for emotional support. Physicians can offer referrals to professional therapists, counselors, hospital centers, and grief support groups who have experience with pregnancy loss and postpartum issues.
That's it! Nothing kooky, fairly straightforward but sensitive (I don't take issue with the notion that a woman who terminates a pregnancy due to an anticipated disability would experience stress and depression afterward — because that's how one would expect a human to react to ending a wanted pregnancy). Even Hennessey, who calls himself "as pro-life as they come" didn't even find the neutral-sounding language offensive. But other Down Syndrome advocacy groups did, and in response they scrapped the pamphlet and quietly removed one of the pamphlet's advocates and authors, Dr. Brian Skotko, from the board of the National Down Syndrome Society. In its place, a new pamphlet was issued that doesn't mention abortion at all.
According to most estimates, between 87 and 98% of all women in the US who receive positive prenatal test results for the disability opt to terminate their pregnancies rather than raise a child with cognitive and physical impairments. In response, parents of children with Down Syndrome and adults with the genetic condition have embarked on advocacy campaigns designed to demonstrate the value of people with DS in the hopes that if potential parents just saw the way that a so-called disability is just another way of experiencing the world, they'd be more likely to carry their pregnancies to term. Their advocacy comes with varying degrees of smug; I'd be in remiss here if I didn't point out how Sarah Palin carted her son with DS around during the 2008 Presidential campaign like some kind of pro-life trophy-purse she'd won. The message her son's presence on stage was sending (besides the fact that Sarah Palin is craven) is that aborting because of an anticipated disability is not a "good enough" reason. Just look at this baby! LOOK AT HIM!
But not every person whose life has been enhanced by a person with disabilities believes that abortion should be totally taken off the table, or that testing and abortion should be something shunned by disability advocacy groups. A great piece by medical ethicist and Down Syndrome advocate Claire Rainer (from, like, 20 years ago, but great all the same) remarks that testing and abortion are occasionally the ethical choice for families facing a Down Syndrome diagnosis. She wrote,
The hard facts are that it is costly in terms of human effort, compassion, energy, and finite resources such as money, to care for individuals with handicaps (and to hell with political correctness; there is more to these dilemmas than mere "learning difficulties").
Other children of the families pay the price of less attention and support for themselves and later responsibility for their siblings when their parents are no longer able to care for the weaker child themselves - and we all share that burden. All over the UK, there are people with various handicaps struggling to cope with state-supported institutional life after living with devoted parents until those parents were too old to cope or were dead. People who are not yet parents should ask themselves if they have the right to inflict such burdens on others, however willing they are themselves to take their share of the burden in the beginning.
While Rainer's use of the word "burden" would probably cause wincing among some, her point stands — raising a child with a disability like Down Syndrome can be immensely rewarding for families who are ready to meet the unique challenges of those circumstances, but they can be destructive and heartbreaking for families that aren't ready. And families that aren't ready but are against abortion end up further weighing down an already stretched foster care system, subjecting a child to a lifetime of instability.
The issue of choice as it relates to anticipated disabilities has always been a sticky one for me, as my dad's oldest brother had Down Syndrome. When he was born to my grandparents in 1949, they were told by my grandmother's obstetrician that the best thing for them to do, for the sake of their child and for the sake of their lives, would be to hand him over to the state of Wisconsin, where he'd live in an institution along with other developmentally disabled kids. They were young, they were poor. They were farmers. A disabled kid would likely be beyond their capacity to care for — too expensive, too complicated, too much of a hassle. While the doctor explained this to them, a medical resident standing behind the doctor locked eyes with my grandma and shook his head "No, no, no." So he stayed with them.
I grew up less than a mile from where my father and his brothers grew up, and spent most afternoons after school at my grandparents' house, where my uncle would sit on the floor watching comic book cartoons or sorting baseball cards or not letting me color in his coloring books because I'd scribble and mess it up (he was right; I was a pretty shitty colorer). He loved A Current Affair and dressing up like Darth Vader for every single Halloween. I loved my uncle and he was one of the most important people to me. I think about him every day.
But my uncle had a hard life, like a lot of kids with Down Syndrome. He couldn't play with his brothers (well, he could play baseball, but he had to have someone pinch run for him), he had health problems that doctors said would prevent him from living past the age of 9, my grandparents had to make sacrifices, and when he died in his early 40's, it was pretty much the worst thing that ever happened to every member of my family, to that point. Just because my family was able to make it work doesn't mean that it would turn out the same for everyone, though, or that anyone should be guilted or shamed away from choosing abortion in the case of a serious disability.
And there's really no point in arguing about how sad my life would have been if my grandparents had the resources to terminate after a Down Syndrome diagnosis. Hypotheticals like that are useless. What if a different sperm had gotten to the egg first? What if my dad had never been born? What if I never existed? What if your dad stood too close to the microwave on the night you were conceived and you ended up being born with flippers and you became a swimming champion? It's been said before, but it bears repeating: a million tiny coincidences had to line up for any of us to exist. Sentimentalizing unrealized possibilities is a great way to What If your way out of living.
Even though I'm so pro choice I'd give Charmaine Yoest a migraine if we were ever in the same room, for years, it was difficult for me to refrain from judging women who chose abortion after a Down Syndrome diagnosis. I felt so lucky to have known my uncle, and he was so awesome and funny and great that I couldn't relate to a person who would opt to prevent someone like him from being born. But personal experiences aren't universal, and it's unfair to judge or attempt to cajole women about the choices they make about their families.
This is a bizarre contradiction with many anti-abortion rights arguments — women who don't feel like they're ready for a baby should be forced, or if not forced, persuaded or misled into having a baby, because we, as outsiders, know more about every individual woman's capacity to be a mother than she knows about herself. This bizarre "take your medicine" attitude that reflects a profound distrust in women's ability to decide things about their own situations — when it comes to sterilization, birth control, and even reporting rape. Silly women don't know what's best for them. And while I'm sure that disability advocates mean well by sharing their positive experiences living with people with disabilities like Down Syndrome, and they're right that misperceptions probably contribute to some cases of women aborting after a Down Syndrome diagnosis, there's a difference between advocating and actively misleading. And distributing information that doesn't even mention abortion does patients a disservice and treats women as though they couldn't possibly know what's best for themselves and their families.
Would I have an abortion if I found out I was pregnant with a child with Down Syndrome? No. I understand the challenges that could face a family raising a child with Down Syndrome because I've seen them first hand, and I'd accept them. But I also understand that it's not for everyone and would never want to force my personal beliefs on people who are not me. Raising a child with DS can be emotionally expensive and financially draining — and it's not up to me to tell other people how they should or should not form their families.
I have my own reasons for making the decision I'd make. But can I, or anyone else, make that choice for another woman? Hell no.