Between two worlds

Today The Abortion Debate No One Wants to Have (Prenatal testing is making your right to abort a disabled child more like "your duty" to abort a disabled child)* was mailed out on the national Down syndrome e-list. The mother who shared it used the heading, "Finally, someone is speaking my heart." I responded, "Mine, too." Patricia E. Bauer, the author, writes:

What I don't understand is how we as a society can tacitly write off a whole group of people as having no value. I'd like to think that it's time to put that particular piece of baggage on the table and talk about it, but I'm not optimistic. People want what they want: a perfect baby, a perfect life. To which I say: Good luck. Or maybe, dream on.

And here's one more piece of un-discussable baggage: This question is a small but nonetheless significant part of what's driving the abortion discussion in this country. I have to think that there are many pro-choicers who, while paying obeisance to the rights of people with disabilities, want at the same time to preserve their right to ensure that no one with disabilities will be born into their own families. The abortion debate is not just about a woman's right to choose whether to have a baby; it's also about a woman's right to choose which baby she wants to have.

* * * * * * *
Last week, Mel of Actual Unretouched Photo linked to a Harvard Gazette article about a study by Brian Skotko, a med school student. Skotko, who has a sister with Down syndrome researched the manner in which physicians tell parents their baby has Down syndrome, and made recommendations for improvement.

Doctors continue to find it very challenging to deliver a diagnosis like Down syndrome to an otherwise happy expectant mom," says Skotko, who has a 24-year-old sister with Down syndrome and co-authored the award-winning book "Common Threads: Celebrating Life With Down Syndrome" (Band of Angels Press). "But the results of this study are conclusive: Delivering a prenatal diagnosis of Down syndrome does not have to be a gloomy affair. In fact, mothers in this study have now written the prescription on how best to explain the diagnosis in a loving manner."

* * * * * * *
Yesterday, Dan from Cerulean Sanctum referred me to a Wall Street Journal article about a young woman with Down syndrome planning her wedding:

But then, Ms. Bergeron said something that quieted the room. Despite her many successes and a level of integration that once seemed impossible to imagine for someone with her disability, Ms. Bergeron said she still didn't have many close friends. Often, she added, "I felt lonely."

Ms. Bergeron's dilemma is especially poignant because people with Down syndrome and other developmental disabilities increasingly find themselves succeeding in mainstream society. They go to public schools, taking classes, joining sports teams and singing in the choir with classmates. They work at jobs in the community. But still, like Ms. Bergeron, they often find themselves caught between two worlds.

Many people with disabilities, and sometimes their families, do feel they live between two worlds. Sometimes they feel invisible in our culture. I am glad when attention is paid.

From WSJ: A Brother's Survey Touches a Nerve In Abortion Fight (also covers the Skotko study)
A Young Woman With Disabilities Plans Her Wedding
(I think the National Down Syndrome Society is paying to make these available online. Generally, Wall Street Journal articles are available only to subscribers.)

*Justin Taylor, who blogs at Between Two Worlds, also links to additional, related articles. (HT: Adrian Warnock)