Sunday, August 3, 2014

"I wouldn't waste time thinking before terminating a Down syndrome pregnancy."

Last week I wrote an essay on the way elements of the right-wing are trying to use prenatal testing as a wedge issue in the abortion wars. Among other pieces, I wrote:
What they should ALSO do, however, is to offer complete information that will help people make informed decisions - decisions that will, I hope, result in lowering the rate of abortions.
The comment came from Ivyfree and I thought was interesting enough, and upsetting enough, that it merited its own post:
None of which will do anything because right-wingers are mortally opposed to providing financial help for programs that will assist the parents in coping with a child whose capabilities may be near-normal to requiring total care for their entire life, which may extend for years after the deaths of the parents.

However, many women will still choose to abort, no matter what assistance is available. Because nobody, during pregnancy, prays for a child with Down syndrome no matter how much of a blessing they claim s/he is later. Everyone prays for a healthy baby. Given the choice, that's what most people will choose. I'm not making a moral judgment here. I would certainly terminate a Down pregnancy myself, and I wouldn't waste much time thinking about it.
Dear Ivyfree,

Thank you for your comment. I always appreciate it when people offer dissenting opinions. You hit on a few key issues, but I want to say first that the end of your comment fills me with sadness. It's a viewpoint that renders my son less than human, my son's life worthless. Moreover, the eugenic mentality it betrays is pretty upsetting when you push it to its logical conclusion. I'll say more about that in a moment.

Let's start by looking at the right-wing. In fact, this is something of a wedge issue among the right. Many believe strongly in robust social programs for the disabled. What is less common is to believe that the government should provide such program, believing, I think mistakenly, in the power of charitable giving. Charity is great, but it can only handle the easy cases - the cute (like my son), the moderately well-functioning, the not-so-expensive. If you look at disability-related bills that do pass even our paralyzed Congress, there's widespread bipartisan agreement that people with disabilities, especially disabilities like Down syndrome, deserve help.

The question is what kind of help and who should get it. There's a hierarchy of disability - my son is honestly pretty high up, since he's cute and not medically expensive (this is generally true for Down syndrome). Others are not so lucky. Moreover, when discussing social services (and social security), there's a general attempt to divide and conquer. Republican lawmakers say to old (esp white) people - YOU deserve social security, but not those moochers. They say to families like mine (and Sarah Palin's) - YOUR son deserves benefits, but not those other disabled people who are just lazy fakers.

It's not that we don't need more robust programs - we do. Better funding for special ed. Massive new social programs for adults once they age out of school (a big writing topic for me in the months to come). Respite care for parents. Whole life services. Caring homes and institutions for those who know it.

I've been writing about this since my first essay on Down syndrome, written back in 2008. We can't just write about the prenatal world and abortion - and I don't. I wrote:
Choosing life is not about what happens in utero, but about what follows. Choosing life is about knowledge. It's about training doctors and nurses how to talk to expectant parents. Most of all, it's about providing an antidote to fear by changing the perception of disability. 
What I want is a serious national conversation about raising children with disabilities -- the way that government, schools, churches, doctors, HMOs, and most of all friends and families can help us. My wife, son and I belong to three or four support groups, have four early intervention therapies a week in our home, go to a weekly group therapy and are about to start aquatic therapy. We have four doctors and will probably have more before too long. We've got thousands of challenges ahead of us -- but what parent doesn't? Let's talk about the federal mandates that order, but do not fund, early intervention. Let's talk about universal health care and special education. Let's talk about how to help our children find meaningful lives as adults. Most of all, let's talk about ways to ensure that everyone sees people with Down syndrome as, first and foremost, just people. Then we can get to work on the syndrome.
I stand by those words. They have guided my public voice on Down syndrome ever since.

Unfortunately - I don't think you see people with Down syndrome as people. Not really. Not fully. The idea of having an abortion without wasting time thinking about it, due to a pre-natal diagnosis, may be honest, but it's also cruel to say and eugenic in its essence. I find the eugenic frame of mind frightening. As the future becomes the present, we are going to have more and more information about our unborn children. What conditions would you abort? Which ones not? These are very complicated decisions. As I write, the pre-natal testing world for Down syndrome is a test run for the future of human procreation, and it's one I think we're failing.

Moreover, I feel like you could use some information in the whole-picture pro-information world. For example, you write, "Everyone prays for a healthy baby." Well, my son was a healthy baby. He also has Down syndrome. In fact, we have no idea about the true capacity of people with Down syndrome, but I can tell you that thirty years ago no one would have expected so many people to be living long, healthy, productive lives. The future for Down syndrome is actually pretty bright.

Despite this, having a child with Down syndrome can be hard. The diagnosis is frightening (here's my story). I understand people who collect all the information, think about the circumstances of their lives, and decide that they just can't go through with the pregnancy. I will fight to make sure they have the right and access to abortion. If you became pregnant and decided to have an abortion, I would understand that too.

But I hope you would spend some time thinking hard about it, and thinking about what such a decision might or might not mean.

Again, thanks for the comment.

EDIT: A friend of mine who has a medically-complex child with Down syndrome, suggested it would be helpful to add: "Sure everyone wants a healthy baby, but a lot of families of kids with serious health problems also find a lot of joy in living, and that's worth understanding before you make a decision about abortion." She's totally right. In fact, that's one of the deep lessons of life with disability - a life that doesn't fit our plan, our vision of what "should" be, turns out to be filled with joy.