Form and Function

This has been on my mind for a while...then last weekend, we were at a Stand Up Rally for Religious Freedom, where I met several other families who have children with Down Syndrome. One mother was older, probably late 50's. She sized up Julia, then declared that I would "be fine. She seems pretty high-functioning." She then proceeded to tell me that her son with Down Syndrome was "low-functioning." I cringed. She walked away saying, "Don't have children in your 40's." I didn't want her to sugarcoat her experience, or tell me that her son can do things that he can't...but describing your child as "low-functioning?" How about let's start with his name? 

People seem to have the need to rate children with Down Syndrome on a function scale. It's not the first time someone has given me an unsolicited declaration that Julia will be high functioning. Rather than responding with, "Thanks random 70-year-old lady who has no medical training," I just smile and nod. Now it's true, I hope Julia will be verbal rather than non-verbal, I hope she will thrive in a school setting...but at the end of the day, I will love her the same no how matter how much or how little she can do. And I hope others will, too.

Even within the Down Syndrome community, there can be competition among parents about whose child is the least Down Syndrome-y. I'm not kidding. You'll hear parents bragging about how early their child was using sign language, or when they started to crawl, or walk, or...you get the picture. I do understand wanting to share the joy of each of Julia's accomplishments, because they don't come easily. But sometimes underneath the bragging is the desire to want to prove to others that our child has worth, too -- because of what she can do. 

This is a dangerous path if we start equating worth with ability. As you may already know, the abortion rates for babies with Down Syndrome are staggering -- many estimate that around 90% of women who receive a prenatal diagnosis of DS choose to end their pregnancy. Add to that a small but growing movement towards infanticide, that is, the killing of a child, especially those with disabilities, AFTER birth. An article was published earlier this year in the Journal of Medical Ethics, in which 2 Australian philosophers proposed that parents had the right to end the life of their child not only before birth, but also after. One of their arguments was that sometimes conditions cannot be diagnosed prenatally or are simply missed. Julia's Down Syndrome was not diagnosed prenatally; according to their logic, we would have been within our rights to request her death as we held her in our arms.

There is something unsettling about seeing a person's worth only in terms of his abilities. What if those abilities cease? Does his personhood cease, too?  

While the Massachusetts Down Syndrome Congress seeks to promote the lives of individuals with Down Syndrome, they portray life and death for an unborn child with Down Syndrome as equally viable options, following the relativistic trend of "what's good for me may not be good for you." I think ultimately because they are in favor of so-called "women's rights" in general, they don't want to single out an instance where abortion would be considered unacceptable -- even if it led to the purposeful, systematic elimination of those they wish to support. But until we reach a point where we see the child with Down Syndrome who speaks and the child with Down Syndrome who doesn't as equally worthwhile, the child in the womb with Down Syndrome and the child in our arms with Down Syndrome as the same, we are only supporting them halfway.