Cindi Sez: Part two of a conversation about "A Father's Search for a Drug for Down Syndrome"

As you'll recall from yesterday's post, we've begun a multi-part conversation about our responses to the recent NY Times piece, called "A Father's Search for a Drug for Down Syndrome." I asked some people whose thoughts I'm interested in to write guest posts, and they've generously agreed to do so. All the guest-posters are parents of kids with Down syndrome. 

Today's guest author is Cindi May, a faculty member at the College of Charleston who is one of the individuals most responsible for our REACH Program--a truly inclusive, academically challenging college program for people with cognitive disabilities.

Lots of thoughts about this.

First, the picture at the start is grim, and unnecessarily so.  As is (I think) the general depiction of individuals with Down syndrome.  If Costa has only met two who can do algebra, he needs to take a trip to Bishop England*!  There was some positive promise in the article about the outcomes for people with Down syndrome, but not enough emphasis on the impact that education and opportunity can have (in my opinion).

That said, I thought there were two points that struck me:

(1) What are the implications of meds that might improve IQ (or general cognitive functioning) for people with Down syndrome?

(2) How is that different from advanced prenatal diagnosis and termination of a fetus with Down syndrome?

In my mind, medications that improve the function or quality of life of an individual (WITHOUT changing personality or having terrible side effects) are generally a good thing (though perhaps rare).  I would agree with Costa that independence is generally positively associated with happiness, and so if the meds can support independence and reduce some of the hardships, then that is probably a positive.  I liked the fact that the meds are designed to increase function (rather than control behavior, or "minimize disruption," as some meds are designed to do), but I have a fear that the meds might alter more than hippocampal  functioning.  No one would want a medicine that changed the essence of a person.

There is the sense that the use of meds might contribute to our societal expectation that people be "normal" in a very narrow sense, and in most ways I think we are better as a society when "normal" is redefined in a much broader sense that includes diversity at all levels, including intellectual functioning.  If black people could take a pill to make their skin white (and thus free them from prejudice), does that make life better?  Or should we instead concentrate on ridding the world of prejudice?  On the other hand, we do correct for so many other differences (e.g., poor eyesight, poor hearing, diabetes, club feet, cleft palate, speech impediments, heart abnormalities, etc.), and in many ways these corrections do seem to make life better.  It is not so much of a stretch for me to think of brain function as just one other item on that list.

Last but not least, the one angle I liked about the article is that Costa is arguing (though not explicitly) that people with Down syndrome should not be discarded from the start simply because they have Down syndrome - a practice he clearly believes will be the case with new prenatal testing.  I have to agree with him that I don't think parents will be given objective or accurate information as they make decisions about termination, and thus I think many will decide out of fear and/or ignorance to abort if they receive a diagnosis of Down syndrome.  I wish Costa had more clearly articulated the position that people with Down syndrome have value and should be supported and celebrated rather than instantly dismissed.

If prenatal testing could determine fetuses with vision difficulties, parents would not likely instantly terminate; rather they would recognize the many other wonderful attributes in their child and push for ways to help overcome visual impairments.  Sadly, the same is not true for Down syndrome.  It seems to be fully defining in the eyes of the public.  Perhaps Costa's work could help people see that it impacts some things but not everything.

On the same day that the NYT article came out, the National Down Syndrome Society sent out this email, which Cindi asked me to share:

Today, Representatives and Congressional Down Syndrome Caucus Co-Chairs, Cathy McMorris Rodgers (R-WA), Chris Van Hollen (D-MD) and Pete Sessions (R-TX),introduced the Trisomy 21 Act of 2011 or “21 Acts” package (HR 2695 and HR 2696).  The 21 Act package includes two important pieces of legislation, the Trisomy 21 Research Resource Act of 2011 (HR 2696) and Trisomy 21 Research Centers of Excellence Act of 2011 (HR 2695).

The 21 Research Resource Act will expand and intensify Down syndrome programs of the National Institutes of Health (NIH) and the Centers for Disease Control and Prevention (CDC) to create an infrastructure of Down syndrome tools, including a Down syndrome contract registry, Down syndrome research database, and Down syndrome biobank.  These research resources will further strengthen the research being conducted on Down syndrome across the country and better equip our research community with the tools necessary to facilitate their research.  This bill also establishes a Down Syndrome Consortium with NIH to facilitate the exchange of information and make research efforts more efficient by integrating the perspectives of key stake holders.

The 21 Research Centers Act will create at least six Down Syndrome Translational Research Centers of Excellence that provide an optimal venue and infrastructure translational research on Down syndrome. The bill requires NIH to publish a research plan on Down syndrome, and update the plan every five years. This bill provides $6 million to support the Centers of Excellence.  For more information, visit the NDSS site here.

*Bishop England is a school in Charleston which has a fully inclusive academic program.  Why, you might ask, did Bishop England decide to become academically fully inclusive?  Because of the activism of Cindi May.

Part one
Part two
Part three 
Part four
Part five


krlr said...

Love seeing everyone else's thoughts on this - especially the similarities, i.e. we already correct physical issues (I too mention cleft palates & club feet!) and also what others picked up on. LOVE the new bill, esp the excellent timing thereof!

Alison said...

Thanks for your observations, Cindi! Your post raised many questions in my mind...I still don't have clarity, but my questions are improving.

Claire said...

Interesting read Cindi! I think that the independence point is important -- and it would be good to hear from people with down syndrome about their own attitude towards these drugs -- do they see the drugs as aiming to fix something central about them that they do not think needs fixing -- or as a kind of chemical version of eyeglasses or lasics -- it makes it easier to do what you already want to do.