By Jo Ann Simons, Ruderman Family Foundation Disabilities Advisor and CEO Cardinal Cushing Centers
Hardly noticed until Time Magazine reported on it recently, is the availability, for expectant mothers to learn with almost 100% certainty and accuracy whether their unborn child will have Down syndrome. The simple blood test is performed at 10 weeks of pregnancy and checks for the presence of markers for the extra chromosomal material that causes Down syndrome. Expectant mothers have already been given this simple blood test and the test has been administered without one essential aspect: accurate information about the joys and challenges of having a child with Down syndrome.
In a society that values perfection, these tests have been developed and are presently offered with a built-in bias against people with disabilities. For now, the test identifies Down syndrome, a genetic condition with which I have much experience. It will not be too long when the same simple blood test will be able to screen for other conditions like Alzheimer’s, breast cancer and schizophrenia. Can you imagine if we were robbed of the contributions that people with these conditions have made?
We already have too much experience with the horrific outcomes when humans think they can decide who is worthy of life. We should all be very worried that this test will surely lead to the rapid decline in the number of people with Down syndrome and then we will take this knowledge and apply it to other conditions. While it may not be as easy to point to people with Down syndrome and their contributions to our society, I can tell you about the contributions of my son, Jonathan, to my world and to the world of every single person he encounters. He breaks stereotypes and long-held beliefs about people with disabilities and, in doing so, he has single-handedly made the world a better place.
When he volunteers at the Boys and Girls Club, Jonathan becomes a contributor. When he files his taxes, Jonathan becomes responsible. When he accompanied his confirmation class to the Holocaust Museum and announced to the assembled group of typical students and religious school teachers that the Nazi’s “killed kids like me,” Jonathan became the teacher.
Some people may say that he suffers from having Down syndrome and some of the medical conditions that accompany it. I can tell you this — Jonathan does suffer. This year he suffered as he watched his beloved Red Sox crumble in September and crush his hopes for a post season and he still suffering from the New England Patriots Super Bowl loss. Just like millions of other fans, he is just now beginning to be able to talk about it.
On any day, however, he will tell you that he loves his life. Is there any other reason to be?
– Jo Ann Simons