The HuffPostLive segment featured several individuals that have spent time reflecting on prenatal testing and Down syndrome. Dr. Brian Skotko, who has published multiple studies on how diagnoses are delivered and how families and those with Down syndrome evaluate their experience living with Down syndrome; Stephanie Meredith, the author of Understanding a Down Syndrome Diagnosis, one of the three recognized resources by the American College of Medical Genetics and Genomics; Alison Piepmeier, who is conducting interviews with those about their experience with prenatal testing for Down syndrome; Anne Drapkin Lyerly, an OB and past chair of ACOG’s ethics committee, who is expecting her fifth child (who I’ve featured in recent posts); and, Heather Hicks, a blogger at 321mama.com. The discussion was lively, with one particular part generating a lot of comments.
Dr. Skotko has a sister with Down syndrome; Meredith has a 13-year old son with Down syndrome; Piepmeier’s daughter is in elementary school and has Down syndrome; and Hicks has an infant son with Down syndrome. The moderator, Dana Takruri, I would hazard to guess based on her word choice and phrasing of her questions does not have a loved one with Down syndrome.
From the start, when introducing the discussion about the “new tools” offered by Non-Invasive Prenatal Screening (NIPS), she says there is a panel to discuss when the results show “something may be wrong and what is a mother to do?” Near the end she invites Meredith and Piepmeier, as moms, to share with Heather what she can look forward to in raising a child with Down syndrome. This beginning and ending display an objectification of lives with Down syndrome, despite comments in the middle trying to make the key point to avoid this.
I don’t know Takruri and, having moderated panel discussions myself, I sympathize with trying to keep all the plates spinning–getting everyone involved, respecting each other’s time, listening to what is being said, while simultaneously keeping an eye on the clock to make sure the segment doesn’t run over. So, I give her the benefit of the doubt that she did not intend anything negative when, in an effort to compliment the moms on the panel, she said, “Hats off to you ladies.” This was the line that generated the comments.
Takruri’s question following the “Hats off” comment was directed to Piepmeier, a director of Women and Gender Studies at the College of Charleston. Piepmeier took the opportunity to echo the advice given recently on what NOT to say to moms of children with special needs.
Saying “Hats off,” Piepmeier explained, was actually not a compliment as it suggested that moms raising children with Down syndrome are doing something foreign from what all moms are doing in just raising their kids. Piepmeier emphasized that in talking about her being a mom to a child with Down syndrome, we are talking about a human being who is living in the world with the rest of us human beings. It is a key point, that unfortunately must be made because of the reductionist nature of prenatal testing.
Prenatal testing takes a pregnancy carrying a child–more often than not a wanted child, even if the pregnancy was unplanned–and reduces that pregnancy and child down to the results of the prenatal test. This obscures that the test simply identifies one characteristic of a multi-faceted being. Piepmeier’s simple reminder that we’re talking about a person who is living in the world is one that is needed to be kept in mind when discussing a test result for Down syndrome.
Listening to the discussion reminded me of how I felt after reading about Ota Benga.
In 1906, Benga was a member of the Mbuti pygmy tribe who was taken out of Africa by a missionary. But, when the missionary became penniless, he turned Benga over to director of the Bronx Zoo, who placed Benga in. a. zoo. exhibit. with. an orangutan. Tens of thousands of people came to the zoo to see the exhibit where a sign was posted outside the Monkey House. One visitor is quoted as asking, “Is that a man?”
That question, and Benga’s experience of being put on display as though he was some exotic species (the zoo director believed pygmies to be a sub-race) was echoed by the way Takruri asked her questions about living a life with Down syndrome. Again, I don’t know her, and this juxtaposition is not to impugn Takruri as viewing individuals with Down syndrome as a sub-race. But I thought of Benga because Takruri’s clumsy, insensitive way of discussing the topic is actually reflective of how many, if not most, people seem to approach viewing a life with Down syndrome: as something “other,” that is to be examined like a thing on exhibit, instead of appreciating a life with Down syndrome as first a life that is being lived among us. Perhaps if more people shared that appreciation, there would be better discussions and better counseling about prenatal testing for Down syndrome.