The previous post dealt with three of the four reasons given for creating the NDSC/GDSF pamphlet. But it was the fourth reason that got all the attention when the pamphlet launched in November 2012: abortion.
Lettercase’s Understanding a Down Syndrome Diagnosis is the resource recognized by professional guidelines and identified by the national Down syndrome organizations through a Kennedy Foundation grant as the materials to be provided expectant mothers. It addresses termination as an option following a prenatal diagnosis. The booklet does so because when the Down Syndrome Consensus Group convened, the leaders of the professional medical organizations said the resource would need to cover all options, as is required by professional guidelines. (The full text of the reference to termination is covered at this post).
The fourth stated reason
At the 2014 National Down Syndrome Congress’ (NDSC) convention, when asked why NDSC and Global Down Syndrome Foundation (GDSF) created a Down syndrome pamphlet for patients undergoing prenatal testing, the fourth reason given concerned abortion.
This is NDSC’s reason and not that of GDSF. NDSC’s executive director David Tolleson explained to Matt Hennessy in an interview in 2012,
As an advocacy organization, we don’t feel it’s appropriate to promote the value of those with Down syndrome while at the same time also discussing the possibility of abortion.
Tolleson has said essentially the same in his presentation with Michelle Whitten of GDSF at the Down Syndrome Affiliates in Action conference of 2013 and then on Saturday, July 12, 2014 at the NDSC convention.
Except, as shown below, Tolleson’s organization, the NDSC, does discuss the possibility of abortion. But first some context.
At the 2014 convention presentation, Whitten spoke after Tolleson and began by saying, “Personally, I’m pro-choice,” as she has said in many public remarks, including on GDSF’s website. Further, GDSF notes how abortions followed the introduction of amniocentesis in the 1970’s on its Down syndrome research and medical care timeline. GDSF provides public information recognizing termination as an option following a prenatal test result.
NDSC’s position on termination
Tolleson cited two objections for NDSC’s position that a resource for expectant parents shouldn’t discuss the possibility of abortion.
1. Self-advocates object
Tolleson explained that “they spoke with self-advocates”–individuals with Down syndrome–and the self-advocates didn’t think termination should be presented as an equal option following a prenatal test result.
This objection raises the question of “who said what to whom when?” How was this discussion held? Who were the self-advocates and who spoke with them? When did this discussion happen?
But putting aside those questions, as shown below, NDSC has not let the stated objection of self-advocates prevent NDSC from discussing the possibility of abortion.
2. Doctors object
Tolleson said that NDSC “spoke with doctors” who said the issue of termination is one to be discussed between the physician and the patient, not in written materials provided by NDSC. Further, in the presentation at the NDSC convention, Whitten said that the statement that “‘doctors would not hand out materials if termination wasn’t discussed’ was a myth.” However, Whitten noted in the same presentation that doctors had told NDSC/GDSF this very thing.
Whitten presented the results of a market survey of medical professionals and families that GDSF funded. Whitten candidly acknowledged that GDSF’s own survey showed that while medical professionals liked the content of the pamphlet, a significant percentage said they would not hand it out because it didn’t mention termination as an option.
GDSF’s market survey cited to justify the updated pamphlet proves that the statement that “doctors would not hand out materials if termination wasn’t discussed” isn’t a myth. And, this is why Lettercase’s booklet does address that option, because the rest of the information about living a life with Down syndrome, recognized by professionals and the national organizations alike as the information to give parents, would not be given out.
But here’s where the stated objection presents a contradiction:
The NDSC tells expectant parents about termination
Below are screen shots from the NDSC’s website taken on Friday, July 18, 2014.
Here is the page that comes up from the link on the homepage for “New/Expectant Parents” and then the link for Expectant Parents:
Scrolling down this page, NDSC emphasizes that expectant parents have choices, and whatever the choice made after a test result, that choice should be respected:
Now, clicking on the link for “Pre-Natal Screening Tests,” takes the viewer to this page:
NDSC is clear that prenatal testing affords parents the opportunity to terminate their pregnancy. Indeed, NDSC takes the position that if expectant mothers are not considering termination, “there is no reason for a screening test.”
And, in case a baby may have Down syndrome and expectant parents missed that prenatal testing afforded them the chance to abort their pregnancy:
The NDSC website pages for expectant parents express in no uncertain terms that if expectant parents are undergoing prenatal testing, it is so they can terminate their pregnancy.
What’s more, at least from my searching, the NDSC/GDSF pamphlet is not linked on any of NDSC’s website pages.
Reasons that do not justify.
The NDSC partnered with GDSF to create a pamphlet because it says it objected to termination being included. But NDSC does not share the GDSF pamphlet on its website and its website plainly advises parents that the “one reason” for prenatal testing is “so you may terminate your pregnancy if Down syndrome is confirmed.”
When the pamphlet launched in 2012, many questioned why it had been created. At the 2014 NDSC convention, four reasons were given, but all have been shown to lack a basis. Which leaves the question unanswered: why was the NDSC/GDSF pamphlet created?