Down syndrome. Not a problem.

I came across a blog entry today that stopped me in my tracks. “Will babies with Down Syndrome Slowly Disappear”, by Brian Skotko, MD, MPP, in the excellent Children’s Hospital Boston Blog, “Thrive”, discussed a recent study revealing that “soon, a non-invasive test will allow expectant mothers to know whether their fetus has Down syndrome” (There has already been another prenatal test available to determine Down syndrome but there are side effects including possible miscarriage). Dr Skotko goes on to discuss the ramifications of the existence of this new, safe test, as well as the medical ethics questions surrounding it. The fact in post that jumped off the screen at me was that “Currently, 92% of all women worldwide who receive a definitive prenatal diagnosis of Down syndrome choose to terminate their pregnancy.” Yes, you read that correctly. 92%.

My desire here is not to get into a discussion about medical ethics or reproductive rights, worthy as these discussions may be. Rather, I want to talk about why such a high percentage of people would think that having a child with Down syndrome is a bad thing! All I can do is think about the people that I have known in my life who have Down syndrome. Many of these individuals have enriched my life, and I’ve considered them among my friends. I think about the first person I ever got to know with Down syndrome, a young woman named Tiffany, who I met when I was 20 years old. We both loved to listen to Bob Marley (Actually she was into Ziggy Marley and I had the pleasure of introducing Bob’s music to her). Or my friends Alex and Nick, with whom I played basketball for years.

If given the chance to prenatally determine if my unborn child had Down syndrome, would I want to find out? Probably. Just like I found out the gender of my daughter before she was born. I wanted to know whether to paint the room pink or blue, or if I had to brush up on my knowledge of Cinderella and Sleeping Beauty rather than Thomas the Train. With a positive Down syndrome test result, I’d want to talk with other parents, study up on the issue, etc. Basically, I’d just be looking for a little head-start and a small measure of predictability. The fact that a positive result in this test among such a high percentage of others would lead to so much fear and uncertainty in a deeply personal decision-making process, however, is troubling.

This article served as a stark reminder that no matter how much the disability rights movement has accomplished over the years, we still have a ways to go. It is up to us (professionals in the field, family members, friends) to find better ways to communicate that people with Down syndrome (and all intellectual disabilities) lead happy, healthy, productive lives. And some don’t. Just like those of us who don’t have a disability. That’s the thing. Whether or not someone has Down syndrome does not determine his/her happiness, productivity, or self worth. However, for some reason people believe it does. Perhaps as professionals in this field, we have contributed to this misunderstanding. Telling stories about how exceptional and worthy of praise people with disabilities are has certainly had a positive impact on societal acceptance, but maybe it has still served to continue to isolate people with disabilities from “the rest of us”. While more than ever, people are accepting of having someone with Down syndrome as a classmate or a co-worker or a neighbor, there is still a misguided (albeit probably well-intentioned) fear about having a child with down syndrome (and if 92% of people don’t want to have a child with Down syndrome, one can assume the percentage would be similar or greater for other intellectual disabilities).

Those of us who are closest to this situation must continue to work to figure out ways to spread a message of normalcy in addition to exceptionality. We must also resist the urge, difficult as it may be, to speak about individuals with disabilities in a way that allows those disabilities to define the individual. For, a person with Down syndrome is just that: A person first, who happens to have Down syndrome.

(Notes: A great resource for expectant parents of a child with Down syndrome is the Massachusetts Down Syndrome Congress (MDSC). MDSC’s “First Call” program provides information, non-judgemental support, and the opportunity to meet other parents of people with down syndrome. Visit mdsc.org for more information.

Another thing we are getting right in this field is the work that organizations like Special Olympics are doing in working with medical professionals to educate them various “disability” issues. Expectant mothers often turn to their doctors for advice about Down syndrome. However, as Dr. Skotko points out, a “majority of medical students argue that they get minimal education on children with intellectual disabilities.” Here in Massachusetts and around the world, Special Olympics Healthy Athletes program is working to close this education gap. )