Indianapolis, host city for the 2014 NDSC convention
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.
GDSF’s position
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:
What does the NDSC advise expectant parents on 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?
It is so sad that people discuss terminating a baby which has Down Syndrome. Would you discuss terminating a baby that is a dwarf, deaf, has poor eyesight or ginger hair? Maybe some people would.
You can have a normal child which is so badly behaved it will make your life very unhappy.
How do you make a choice?
My little brother has Down Syndrome and when he was born my poor parents had no support from the doctors and nurses at the hospital and they took him home assuming he would never add up to much. He is now 45 and the sweetest, kindest, most loving and funny person I have ever met.
When people hear I have a Down Syndrome brother they say ‘sorry’. Why? I have never argued with him, We laugh a lot. We spend lots of fun time together. It is wonderful to have a brother that remains a sweet little boy for all of his life. I wouldn’t change him for the world.
I understand that this is not always the case and some children with this condition will never be able to achieve alot but like normal children, there are some that will exceed all expectations.
If my parents had aborted my brother I would have missed so much laughter and affection. He will always be like a little boy, but the sweetest most wonderful person – almost perfect as a human being as he is so full of love and kindness, rarely seen in the youth of today.
I think there should be more educated support groups for the parents and children that this syndrome affects, as with understanding and patience a Downs Syndrome person can achieve a lot more than most people realise. I recently taught my brother to use a computer and he is loving it. At school he wasnt even taught to read or write as it was assumed he wasn’t capable. What happened to the law of inclusion which means people with disabilities should be given the same opportunities as everyone else?
I am looking into starting a support group for parents who have a Down Syndrome child, as people who have not experienced Downs first hand are quite negative and this should not really be the case.
Shirley, your experience is reflected in the studies that show siblings report a positive experience of having a brother or sister with Down syndrome; parents too often are not provided accurate information; and there remains a ways to go to realizing true inclusion in school. Thank you for sharing your experience here.
Since doctors, for the most part, are still humans and can bring their own religious and other background into the picture -> Is there an advantage to pleasing both audiences with the 2 sets of information? I have talked to mothers who were pressured to abort and mothers who were *pressured to not test at all* (for fear the mother would choose abortion).
I can see that each of these doctors would have preferred a different pamphlet regarding the abortion issue alone. Finding each of these doctors is its own set of challenges, of course.
This may not be a real “reason” for having two sets of info, but could it be a positive result?
Perhaps, if it was understood which resource was meant for which audience. But then the one resource that doesn’t mention abortion would come to be seen as biased and pro-life by those that do not share that view–indeed, that is what has happened, which is why a significant percentage won’t hand it out.
Yes, that’s always the trick. Finding the audience that will listen.