Post prompted by reader comments and the fact that I'm teaching disability studies again

Two readers made comments on this post. One of the comments is a couple of weeks old, the other came in last night.  They're exactly the sorts of comments and questions I'm hoping for in my Disability, Power, and Privilege class this semester, so I wanted to address them quickly.

One is from Cate, who makes a point about the importance of cognitive abilities and says,

I mean, if my daughter's cognitive abilities can be improved enough so that she can live independently, I want that. (Not to say that she can't live independently anyway, but...how many people with DS do? really truly independently?)

That question immediately made me want to look to the general population:  how many nondisabled people live really truly independently?  This sounds like I'm avoiding her question, and I sort of am, but I'm doing so in a way that makes me reframe my thinking. 

I might automatically say that I live really truly independently, but of course I don't.  I had a pretty major medical crisis a year and a half ago that required a whole team of people to be in place--even to move into my house--to help manage not only my health but my daughter and partner.  These days I'm fairly independent, except for the fact that I'm reliant on Biffle to manage the whole day-to-day living thing.  I'm reliant in ways that our culture feels quite comfortable with, so that's defined as independence.  And let's rest assured that for anybody who is independent, that's temporary.  In class Thursday we discussed Susan Wendell's point, "Unless we die suddenly, we are all disabled eventually."

Okay, not what Cate was actually asking about, but what her question made me think about.


alisondcarr made a comment a few weeks ago.  She asked if I knew about an organization called the Sparkle Effect, which is an cheerleading organization that helps high schools create cheerleading squads that include typical people and people with disabilities.  She asks,

the inclusion aspect--focusing on ability rather than disability--seems positive. but, does that run the risk of washing over the very thing that makes a person different? cheerleader business complicates this question for me. 

Yeah, me, too!  As was the case with Cate's question, I don't have an answer here, just reflections.  So let me start by saying I love inclusion.  Love love love meaningful inclusion.  What I'm skeptical of is pity inclusion, the sort of, "Oh, you can't be on the real cheerleading squad, but we'll create a special squad for you, and the typical girls are going to have something great on their college applications because they are so thoughtful and caring!"  I have no idea if this is what the Sparkle Effect is about.  I've done very little investigating.  I'm just wary.  (Okay, I just watched a video about one of the founders, and she does seem to be a high school girl trying to create social change in the terrain that's familiar to her--cheerleading--so go, her.)

Obviously, if Maybelle decides she's going to be a cheerleader, I will show up and scream and clap and be incredibly proud. But I'm pushing for the meaningfully inclusive not-completely-gender-stereotypical experience.  I hope that Maybelle can be a person not defined either by stereotypes of Down syndrome or stereotypes of gender.  So let's rest assured that when Maybelle is 9, she'll be attending Girls Rock Charleston.

August 24

Here is Maybelle exactly three years ago, just moments after emerging into the world.

And here she is today:

Down syndrome and suffering

I do love having a blog.  In large part this is because I love the way that writing here becomes a kind of conversation.  A friend today was sharing with me how grad school made her feel that writing was a completely solitary activity--alone in the library, sitting silently with dusty books stacked around you, with the pressure to churn out brilliant ideas.  I felt this, too, and hated it.  Only in the last few years have I begun to recognize writing as a community activity, something much like the kinds of conversations I have in my classes.  And I've discovered that what I love about my job is the fact that I get to have analytical conversations all the time.

Okay, so on to the point:  a reader made a comment on one of my recent posts.  The comment was this:

How can you say Down Syndrome does not cause the kind of suffering that panic attacks do when you do not personally have Down Syndrome? I know you are the parent of a child with Down Syndrome but that does not give you the identical perspective of a person with Down Syndrome. Perhaps being smart enough to see and understand the way Down Syndrome may limit a person (for instance it may limit a person's ability to live completely independently/to have true adult autonomy as a person, to have children, etc....)as many people with Down Syndrome are, does cause it's own form of suffering. We are all aware of our own limitations in life; of course we all have them. But most "typically" developing people can fulfill our biological and social destiny to live as free and independent adults and start families if we choose. I know many people with Down Syndrome do live quite independently and have fulfilling lives, but there is also the reality that many people with cognitive disabilities are nevertheless plenty perceptive enough to observe what they are missing as a result of their cognitive challenges.

I guess I just think it's a little patronizing of you to talk about whether or not people with Down Syndrome suffer at all as a result of having DS when you are not a person who has it.

This comment has gotten me thinking.  First of all, the reader is right:  I don't have Down syndrome and therefore can't compare levels of suffering.  Really, you can't compare any kind of suffering between people--suffering, psychological and physical, is such an individualized experience.  Biffle can slice open parts of his body in ways that look profoundly painful to me, and yet they don't seem to bother him much at all.  "Oh, yeah, I cut my hand," he'll say, as if he'd sort of forgotten that he had a huge new scab.  It's impossible to know in any objective way what's more painful:  loneliness or hunger?  A slipped disk or a torn ACL?  A panic attack or a brain tumor?

So I can't compare, and I certainly can't make the claim that people with Down syndrome don't suffer.  There's no across the board claim that can be made, because we're all individuals.  What I guess I can say is that Down syndrome isn't a condition that has a component of physical suffering.  People with Down syndrome don't, as a result of Down syndrome, experience painful physical challenges like those that might accompany cystic fibrosis or chronic fatigue syndrome.

But the reader notes that people with Down syndrome might suffer from the degrees to which they may or may not be able to live independently.  They might suffer from a recognition that they're having to work harder, or differently, than some of the people in the world around them.  Indeed, adults with Down syndrome have made just such observations.

I guess what strikes me about this is that these kinds of suffering aren't qualitatively different than the suffering many people, with and without cognitive disabilities, encounter.  I almost want to say that this is simply part of the human experience.  Although we live in a culture that values independence--and many of us value independence--we're all going to have significant periods in our lives in which we're dependent and interdependent.  Many of us don't have a kind of free independence as our "biological and social destiny."  Along the same lines, we all have areas in which we have to work harder or differently than other people.  Is this qualitatively or significantly different for people with Down syndrome?  Is it worse?  I don't know.

I do know that some of these kinds of suffering are results of cultural biases and stereotypes, and those can be changed.  I worked with an adult with Down syndrome who reflected on her father's absence, the fact that having a daughter with Down syndrome freaked him out so much that he removed himself from her life.  This was a big deal for her, and incredibly painful, and to some extent this guy's absence--I suspect--was based in his own lack of knowledge about Down syndrome.  It wasn't caused by Down syndrome; instead, it was caused by his understanding of Down syndrome and his own choices.

And yet many, many people who don't have Down syndrome have absent fathers.  So this, too, is a kind of suffering that's not in any simplistic way caused by Down syndrome.

So while I can't say how my suffering from panic attacks compares to painful experiences Maybelle is going to have--and I agree that saying so is patronizing--I do want to resist a narrative that allows us easily to associate suffering with Down syndrome. I don't think this is what the reader was doing, but I know that in much of the literature surrounding prenatal testing, folks will discuss terminating a pregnancy with Down syndrome as a way of preventing the suffering that the potential person would have to experience.  And that, too, is a patronizing and poorly informed assessment of Down syndrome.

Sweet Maybelle

1,095 days ago, Biffle composed this song for Maybelle.  This is probably the first song she ever heard. He's finally recorded a version of it which includes the additions we've made over the last three years.


And in case you're interested, here's what it sounded like very early on:


Let me explain in Maybelle's defense that this initially wasn't a song about how bad she smelled--it was a song about her mother's unfortunate body odor. I'd been through a sweaty labor, and then I got woken up early the next morning for various reasons, and things didn't really calm down long enough for me to take a shower, so I developed a pretty noticeable aroma. In the version of the song Biffle's singing in the video, he's singing as Maybelle, not to her.

From my brother Trey's Flickrs

Alison Sez: Part six of a soon-to-be-concluded conversation about "A Father's Search for a Drug for Down Syndrome"

These are some of my thoughts triggered by the NY Times piece called "A Father's Search for a Drug for Down Syndrome" and the responses.  I decided not to strive for coherence, because that makes the stakes awfully high.  Instead, I'm sharing my process.

I'm a person with a lot of anxiety.  For most of my life, I regularly had panic attacks so significant that they got in the way of some life activities.  At one point, when I was in grad school, a psychiatrist prescribed me Paxil and Xanax.  They didn't work, and they had a lot of side effects (everything from weird sleep with Paxil to, you know, the risk of serious addiction with Xanax--and let me also say that when I'm having a panic attack, I have to take what is clinically known as a fuckload of Xanax for it to have an impact).  Years later, as a result of years of specific therapy, yoga, and other sorts of personal/spiritual work, I managed to turn a corner with the anxiety, and I haven't had a debilitating panic attack since...what...2004?  I'm glad I'm not taking a drug for anxiety.

I do take daily Keppra pills, which stop me from having seizures triggered by the brain tumor.  They have some side effects, but they stop the seizures, and seizures are a big deal, so they're worth it.

I reflect on these drug facts as I think about the possible drug for Down syndrome.  I don't have a strong opinion one way or the other.  Instead, I have questions.  I find myself wanting to determine whether or not I have a framework for determining when drugs are a good idea and when they're not.

Biffle and I have talked about this quite a bit, and so far we've come up with this:  drugs are a good idea when they perform an important function that you/your body can't perform without them.  There's no way that I can marshal enough willpower or therapeutic intervention to stop having seizures, so I'm taking Keppra.  Because the panic attack drugs didn't work for me, I found another set of solutions there--solutions that I find highly preferable.  If Paxil had worked like a charm, though, I suspect I'd be a person taking Paxil, and coping with the side effects.  So that's perhaps not a firm ideology, as much as an accident that ended up turning out well.

What does this tell me about the possible drug interventions for Down syndrome?  I'm not sure.  Here's the thing:  Down syndrome isn't a disease, and it doesn't need to be cured.  I value the ways in which Maybelle is different than typical folks, differences that may be linked to Down syndrome or may be linked to her own personal talents, her upbringing, the presence in her life of a bunch of funky, wonderful, weird people--etc.  I don't want those differences eradicated.  Furthermore, Down syndrome doesn't cause the sorts of suffering that panic attacks caused in my life.  To the extent that our culture is viewing Down syndrome as something that needs to be fixed, then I'm not on board.

If this drug would shift Maybelle's cognitive functioning in ways that would make learning easier for her, I just don't know what I think about that.  My initial reaction is that this doesn't seem important enough to me to justify the risk of drugs, or the risk of eradicating any of Maybelle's beautiful differences.  And yet Biffle, as an adult, has begun taking drugs for ADHD, and his experience has been that the shifts in his cognitive functioning are wonderful, sort of miraculous, like, "OH!  This is how people get things done in the day!"  (Perhaps he'll write about this.)

I have no problem with Biffle taking those drugs, because he's an adult making decisions for his own life.  So perhaps my easy answer to this drug question is that when Maybelle's an adult, she'll get to decide what sorts of medical interventions she wants.

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Alison Sez: A heads up

I wanted to let folks know that our conversation about "A Father's Search for a Drug for Down Syndrome" is just about finished.  If anybody else out there has been planning to share something, now is the time!  Soon we're moving on to whatever random topics strike our fancy.

Goodnight, Maybelle

We're taking a short break from our outstanding series of posts comprising a conversation about "A Father's Search for a Drug for Down Syndrome" so that I can share with you something cool Biffle and I have done. If I were being only slightly hyperbolic, I'd say that this is the second-coolest thing we've created together (the first is mentioned repeatedly in the song).

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

We're continuing our multi-part conversation about our responses to the recent NY Times piece called "A Father's Search for a Drug for Down Syndrome."  Today's guest post is different in a couple of ways.  All previous guest-posters have been parents of kids with Down syndrome. Today's guest poster is an uncle of a kid with Down syndrome.  It's my brother Aaron!

So one of the ways this post is different is the uncle-angle.  Another way it's different is that Aaron is a Ph.D. student in the Department of Kinesiology at UNC-Greensboro. His area of interest is exercise psychology, and that's where this post is coming from. As you may remember, in a comment on the first post in this series, Aaron said he was going to go read Costa's research.  Well, he did that, and now he's offering a totally different set of questions and considerations than previous guest posters. 

Also, he is a Ph.D. student who is perfectly comfortable using "doo doo" as a category of analysis.

So I read/skimmed a few of the studies that Costa and his colleagues did. My main observation is that these are scientists interested in how drugs can be used to increase the cognitive performance of those with DS. Drugs are their thing. So, they're looking at their questions through this lens.

In the same regard I'm looking at all of my questions through the lens of exercise. This is what I have to say after reading the literature (To be fair, I only read the 3 articles specifically mentioned in the NYT - these guys have published loads of stuff).

MEDICINE has been found to increase the number of brain cells in the dentate gyrus of the hippocampus (Prozac), as well as increase cognitive performance (Memantine) in rats.

EXERCISE has been found to do the same thing. What's interesting is that Costa actually cites one of the foundational pieces of literature that shows how exercise increases neurogenesis (new brain cell growth), but he doesn't mention how his results match up (better, worse, same). I pulled up both articles to compare their findings and the metrics were off. Just lead me to a bunch of questions regarding the experimental design of the study that I don't think you'd be very interested in.

Additionally, Costa's justification for testing the effectiveness of Memantine comes from an exploration into a potential mechanism of the early onset Alzheimer's-like symptoms that a lot of people with DS get. It's been seen that exercise helps with symptoms of Alzheimer's - especially in those with certain genetic predispositions for early onset.

The NYT article goes on to mention other studies that have shown that learning is enhanced by increasing norepinephrine and decreasing beta amyloid deposits. Exercise does this too.

Here's what we need to know: Which helps more; exercise or meds? Is there an interaction? Meaning, is it even better to do both? Past studies have shown that some antidepressants increase the expression of BDNF (like miracle grow for brain cells) in the dentate gyrus. However, exercise been found to do the same thing. And, when combined with drugs, it does even better.

Obviously, I look to exercise for answers. However, there are several reasons why it's important that we know if exercise is a viable option for increasing cognitive performance, quality of life, and physical health (regardless of your net chromosome count). Exercise is free for everyone! It helps with our entire self (mind and body). And the side effects include: looking awesome, feeling great, having better doo doo's, sleeping better, increased insulin sensitivity (bye bye diabetes), etc...

So, we don't know how well this magic pill stacks up against the exercise studies that are out there. And, actually, I haven't seen any studies that have looked at these exercise questions with mice or people with DS. However, based on what is out there, I see a lot of parallels. And, I'm 100% sure that most parents of kids with DS would agree that making sure that their kids get enough physical activity is a good thing. No guilty Matrix-like dilemmas (should I take the blue pill?)- just moving your body.

I'm all for increasing cognitive performance. But, when dealing with meds, there are a lot of questions that need to be answered first (especially with kids!). The little I've read about the experiences kids with ADHD have while trying to adjust to their meds has been heart breaking. Sometimes meds can really help someone out, but sometimes they can cause more problems than they solve (medical, social, etc).

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

We're continuing our multi-part conversation about our responses to the recent NY Times piece called "A Father's Search for a Drug for Down Syndrome."  All the guest-posters are parents of kids with Down syndrome. 

Today's guest author is Brad, a father and activist who does a great deal of letter-writing, and also writes a fair number of comments on mainstream media posts about Down syndrome.  You'll remember that I posted about some of his activism over at Girl w/Pen.  In a recent email to me, Brad shared, "Never thought I would want to / have to change the world.....but now I can't imagine allowing the world complacency.  Change is a lot of work, yet easier than I ever imagined ...strange?!"


When I first learned about +15 (DSRTF) and then again when I read about changing minds I was initially repelled. I want people to accept my child for who she is, not change her to fit our rigid and normative culture.

But then I thought about it, and if there were a treatment I could take that would make my life easier and my ability to participate more freely, I would want to try it (assuming no major side effects). Nothing could stop you from stopping treatment and reverting (it's not surgery). I don't think a more intelligent Brianna has to mean her personality is 180 degrees different. I am sure it won't be 100% the same, as mine changed when I went to college, when I was exposed to different people, when Bri was born....why should I expect hers to be rigidly the same? But I am sure she would be a more happy individual if she were able to contribute more to society, were able to have greater independence and do the things us adults love to do (buy homes, drive cars, have our choice of employment, even potentially have a family of her own....who knows?!)

This article framed up a race I see in my head....first will come a push for extermination through testing, but that will be followed by many children with DS being born to parents who refuse to abort. Those children could soon have 90 or 110 IQ's. Then society will be forced to deal with the real issue...they are afraid of people with DS because they look different. The heart issue is solvable, the IQ and independence questions are non-issues. So you are left with few issues to cloak the real concern. And I think that is when some real breakthroughs will come for DS and other disabilities as a result!

What do you think?



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

This is the sign for "What the Hell, Mom?"

We're continuing our multi-part conversation about our responses to the recent NY Times piece called "A Father's Search for a Drug for Down Syndrome."  All the guest-posters are parents of kids with Down syndrome. 

Today's guest author is krlr, the blogger over at Trial Run who consistently writes thoughtful, emotional, and funny pieces about life in her world.  Although it's perhaps not fair to do so, I've borrowed a picture of her daughter from her blog so that we can all appreciate how adorable she is.  We haven't had enough visual imagery as part of this conversation, so there you go.  I didn't write the caption, because I'm not as funny as krlr.


When I first read Dan Hurley’s article I was dismayed by his unsympathetic description of Dr Costa’s daughter and by his sloppy language.  I reread it because it’s about a controversial issue near & dear to my heart and I would have been happy to ignore the former if only to explore the latter.  I was still left unsatisfied.  He skims the vast ocean of disability, medical testing / experimentation, research priorities and returns to port, never having felt a drop of water.  So Sunday morning I wrote over three pages pointing out everything which should have been expanded on and explained …and then I came full circle, conceding he simply couldn’t have charted that ocean in one article in a weekend magazine.  I even gave him a little credit for trying to provide context. 

And since I criticized Dan Hurley for being unable to navigate this world in one essay I won’t try to in a (hopefully) shorter blog post.  Except I can think of few other issues more complicated and emotionally fraught, so bear with me.  This is, unbelievably, the short version. 

It is a well known fact, not mentioned in the article, that over 90% of fetuses known to have Down syndrome are aborted.  However most of the babies with DS are not born to the mysterious 10% who know in advance their baby has an extra chromosome.  They are born to moms who refused all testing, knowing they’d never terminate, no matter what, and they are born to moms who were given “indicators” but who decided, for one reason or another, to run the numbers and hope.  The non-invasive blood test removes the risks of miscarriage which deterred some of those moms from seeking certainty, and it’s done early enough so that moms haven’t yet felt their little bundles of joy kicking around inside of them.  Although some would argue with me, termination is simply safer & easier to consider in the first few months. 

One of the test’s developers is quoted in the article as saying it would not be “an obvious step that you would terminate an affected pregnancy,” but over 90% already do.  And a good number of them do following a mid-pregnancy amnio (i.e. post palpable baby movement), and do so despite various advocacy groups’ efforts, and do so despite Glee’s inclusive cast, and even despite knowing that those with Down syndrome “do far better than once thought possible” (unfortunate phrasing aside).  It is impossible to believe the live birth rate for babies with Down syndrome won’t plummet once the new test is available.  

Later in the article, the author discussed parents’ ambivalence about a “cure,” the “surprising” 27% of Canadians who said no, and the other 32% who were unsure.  It appears counter-intuitive to the numbers above – what diagnosis is so tragic as to warrant a 9/10 termination rate but for which over half of the parents in question would refuse a “fix”?  Simple enough – parents can’t imagine loving their kids any more even if “fixed.” Nor do we want replacement kids.  He quoted Michael Bérubé, who was leery of “messing with the attributes [his son] has.”  The author then wrote parents fear “increasing their children's intelligence might change their personalities – their very identities.”

We fight so hard for our children to be accepted as individuals and afforded equal rights, funding, and basic human dignity – that our reflexive position is defensive.  Our children are worthy of respect, just the way they are, dammit.  But there is always a risk in the special needs community of infantilizing the disabled.  Kids with Down syndrome, particularly, are stereotyped as being “always so sweet and loving.”  My daughter is full of joy, curiosity, and has more personality than 90% of the people I know.  She IS sweet and loving.  But her brother is too and he only has 46 chromosomes. Neither kid needs “fixing.”  But I do not think my daughter’s sweet spunkiness is a direct result of having a 47th choromosome or of her cognitive limitations.  To presume she’s sweet because she’s short a few IQ points is akin to calling her a “pillow angel.” 

Doctors are now doing surgery on fetuses with spina bifida so as to eliminate much of what caused those babies’ cognitive disabilities.  Several years ago parents of those kids faced eerily similar situations to the parents of kids with DS:  a prenatal diagnoses and the decision to terminate or face years of medical struggles, IEPs, and the very real possibility their kid might not be able to live independently. Now spina bifida requires a one hour long surgery to fix.  And it’s no longer even experimental, so insurance covers it.  It would be interesting to know how much and how fast the termination rate has dropped.

No simple surgery can pry the 47th chromosome out every cell in my child’s body but what about a pill, once a day, that would eliminate her need for IEPs, that would make doing algebra a normal sit-down-and-do-your-homework-young-lady! issue, and not a miracle worthy of report in no less than the NY Times?  Or maybe a pill that would “fix” her speech delays so that I can hear her call me Mom?  I don’t think her learning to verbalize will lessen the ferocity of her hugs… and easy solutions are tempting. 

What’s more, I suspect -or fantasize- that if we reach that point parents receiving a pre-natal diagnosis of Down syndrome will hear, “Yes, it’s unfortunate but it’s managable with this blue pill and a little extra effort,” much as they now tell parents of kids with diabetes that it’s manageable with insulin and little extra care.  [Yes, this is a gross over-simplification.  But what if it eventually ISN’T?].  Denmark now has the explicit state goal of eliminating Down syndrome – since DS occurs at conception and cannot be prevented with spinach salads or extra Vitamin C, this requires termination.  State mandated eugenics, alive and well in Western Europe.  Would this policy survive if DS becomes simply a physical condition, requiring maybe a heart repair and extra PT, and not a cognitive issue?  No one is advocating eugenics for kids with diabetes.  If it becomes a "manageable condition," then maybe my daughter won’t be the “last of a generation”.  Also tempting.

Do I think it would end terminations by parents distraught by the diagnoses?  No.  Parents terminate otherwise planned for babies because they are having girls, or having kids with cleft palates or club feet.  Those incapable of handling cleft palate repair, probably wouldn’t want to deal with a baby with “heavy lidded” eyes.  [That they might feel differently if our nation’s leading newspaper called them almond or Asian-shaped eyes instead is a different issue]. 

However - and this is where it gets sticky - would I want them to test their elixir on my child?   No. Absolutely not.  I’m not going to risk her liver or kidneys or already repaired heart so that she can help them figure out which warning labels to slap on the bottle.  She IS fine the way she is.  She will lead a happy productive life, with or without algebra.  Ten years from now, following widespread use by other people’s kids, I might have a different answer, & will be grateful to those other parents for being braver than I, but while I regret the need for IEPs, I don’t think my daughter needs fixing.  Nor do I feel compelled to (possibly) sacrifice her health so that others might be less tempted to end a pregnancy. 

But am I doing enough for her if I don’t reach for every conceivable advantage?  Some parents are already supplementing with fish oil and ginko biloba – they seem relatively safe.  No harm, right?  Where is the line between accepting and loving our kids for who they are, doing our job as parents and maximizing their potential, and risking their hearts with the intellectual equivalent of fen-phen?  What if the potential options for how she lives her “happy and productive life” are trebled if her noisy NMDA receptors are quieted?  As Mr. Bérubé states, “If you’re talking about a medication that allows people to function in society and hold jobs, how can you be against that?”  Again, tempting. 



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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