07:15 Rachel’s first experience with a genetic counselor? Before the amnio during her first pregnancy, “Someone came in and read us a script.” The second time, they opted not to test.
10:31 On the pro-information movement: Rachel discusses the fine line between giving the right information and pushing people to keep a pregnancy. “The best one can do is to listen…”
17:24 Is DS a disability or a difference? Rachel says that the word difference is “too bland.” Pro-tip: do NOT use the word “disease.”
19:17 We contemplate a thought experiment: if no one was ever born with DS again, would that be a bad thing?
27:30 Therapies for DS are on the way. But what would Rachel treat?
Rachel Adam’s life took an unexpected turn 11 years ago, when her son was diagnosed with Down syndrome shortly after birth. Her memoir, Raising Henry, is a deeply thoughtful and eloquent look at her own experience as a mother and her introduction into the Down syndrome community. She shares some of that eloquence with us, and talks about the challenge of being both a staunch believer in the right to choose, and an advocate for not only her son, but the whole concept of Down syndrome as an example of “healthy disability.”
Here is the link for Lettercase, the site that Rachel mentions that offers the excellent resource Understanding a Down Syndrome Diagnosis in several languages.
Here’s Henry at Halloween, dressed (obviously!) as Gaston from Beauty and the Beast. Henry, we have on good authority, knows every word of Beauty and the Beast. Also, his mother informs us, he tends to like the villains…