A few thoughts on the DS-Connect registry.

There is a government registry of people with Down syndrome that purports to provide "an important resource to individuals with Down syndrome and their families," and to link "those seeking volunteers for their research studies with those who most stand to benefit from the research."

"Wow, great!" you might think, "What research?"

Well. At first glance the "Goals of NICHD Research on Down syndrome" seem to have some reasonable, important points: such as research into leukemia and heart disease as well as assessing real world access to healthcare. Incredibly important stuff, that. But.

But:

• Causes, pathophysiology, and disease progression. Topics include aging and Down syndrome, the effect of cellular and molecular processes on symptoms, and cognitive functioning in model mice.
• Diagnosis, screening, and functional measures. Goals in this area include improved characterization of Down syndrome phenotypes, investigation of measures of cognitive function throughout the lifespan, and better linkage between human and mouse studies.
• Treatment. This topic area includes testing orphan drugs, measuring the impact of early intervention on cognitive development, and using Alzheimer's disease research to inform potential therapeutics.
• Comorbid medical and psychiatric conditions. Research explores treatment and management of such conditions as leukemia, congenital heart disease, and dementia.
• Living with Down syndrome. Studies cover a broad range of issues, such as tracking real-world outcomes for families living with Down syndrome, health disparities in access to care, and interventions for transitional stages.
• Research infrastructure. Efforts include promoting the inclusion of people with Down syndrome in a range of NIH-sponsored clinical trials, building tissue and brain banks, and improving availability of animal models.

 
Even without picking apart the language as I'm wont to do and as is sorely needed in this textbook medical-model document, what is it that's really there? How many of these points center on something relating to cognitive function, or cognitive development?

From this document it emerges that there is no difference, diversity, or divergence in cognition, just cognition that is the issue in Down syndrome. Which is Down syndrome, while other stuff is co-morbid. Much effort and much emphasis is on research to do with affecting cognition or its development.

Here are a few examples of what's made it into mainstream and professional media about the current research efforts and Down syndrome (that isn't about prenatal detection of Ds):

IQ-Boosting Drugs Aim to Help Down Syndrome Kids Learn

Can Down Syndrome Be Treated?

People With Intellectual Disabilities Get a Say in Drug Trials

New Drugs May Transform Down Syndrome

A Drug for Down Syndrome

Yet, often the registry is sold - meaning that enrolling a child, or a dependent (I assume no effort has been made to make the process accessible for people with Down syndrome themselves, or at least I couldn't locate an accessible enrollment process on the site?) is strongly encouraged with talk of "improving" a person's quality of life - with research on Alzheimer's and dementia, heart defects, and leukemia, which are often issues that literally do diminish one's quality of life, unlike intellectual disability.

We all know that talk of cognitive research is a mine field still.

On one end of the continuum of thoughts on this debate, there are people who cannot understand why someone wouldn't want to have as 'typically developing', 'independent' and sometimes even as 'socially acceptable' a child as possible if they had the chance, and on the other end there are those who believe that their children are exactly who they were meant to be and wouldn't imagine doing anything that might alter what they understand as their kids' 'essence' in any way.

But it's not only about what the parents say and most definitely shouldn't be, perhaps at all (another post, on guardianship, coming soon). There are people with Down syndrome who say that they are proud of who they are just the way that they are and regardless of their perceived intellectual disability wouldn't want to change their cognition, and there are other people with Down syndrome who would like help in making their "brain better" (at least in the studies in this link, there's emphasis on listening to the actual participants and making sure they want to participate, and that they understand what they're participating in and why.)

The DS-Connect registry is sponsored by National Institutes of Health (NIH) which state that "In developing DS-Connect™, the NIH listened to information and expertise provided by families of people with Down syndrome, researchers who study Down syndrome, and other members of the public" (My emphasis).

If I had a genetic condition someone was creating a registry about, I'd want to have been offered the chance to be heard, not just those around me. But that's just me, I like to have a say in matters that directly affect me.

I can only speak for myself, and only hypothetically, since I don't actually have Down syndrome, or another genetic condition that there is a research registry about. But I do know that I wouldn't want to change my cognition. I like my cognition fine the way it is and yet basic math overwhelms me, something I don't mind especially or would want to change. Why would I? My inability to do basic math has worked and still constantly works to steer me to humanities. Something I wouldn't change for the world. It also allows for me to delegate every single task in our household involving calculations to my husband, and leaves waiters loving me when I accidentally tip them 60% if I don't use an app to calculate the tip.

Maybe I would feel differently if the world kept telling me that there was something wrong with my cognition, instead of helping me out when numbers overwhelm me? But wouldn't that mean that I should be getting angry at the world for telling me such lies instead of trying to make myself more tolerable to others, or instead of wanting to provide brain tissue samples so that researchers could study my difficulties with fractions in hopes of treating them?

Where do we draw the line between medical and social?

I don't know if my child would or will consent to being part of  the DS-Connect registry, and I can't know whether the data I might be able to view would be data collected after consensual participation by the person with Down syndrome. So that I, as a parent not involved in any kind of research, can view "similarities"?

This should not be a debate or a discussion of whether Down syndrome should or can be "treated" and whether that's something one supports as a course of action, this should be a discussion on what makes us think and believe that intellectual disability (so not leukemia, not heart defects, not celiac disease, not hypothyroidism) is a pathology that consists of impairments that should be done away with with different kinds of chemical and physical interventions to the greatest possible extent, instead of accommodating for differences in cognition, ability, and memory.

If we call them challenges, the narrative of overcoming is sure to tag along.

I'm not willing to compromise the kind of world we live in. I'm not willing to say "I'll take the trickle of good research efforts focusing on actual medical issues with the river of what is sold as suffering from mental deficits and lack of independence." I'm not willing to set aside my disgust at the rhetoric of "treating Down syndrome" and "improving" those with memory and cognitive deficits for what, if anything, might emerge about treating childhood leukemia, sleep apnea, or congenital heart defects.

Research efforts don't take place in a vacuum. They help shape people's perceptions, especially when they make the news. If we keep telling the world that we welcome "medical solutions" to this "problem of cognitive deficits" what are we really doing to people with Down syndrome? To acceptance? To inclusion? To equality? To civil rights and liberties?

What the research can all too easily imply and promote is that intellectual disability is a "medical problem" in need of a "fix", "treatment" or a "cure" instead of the result of a society that considers intellect, and alongside it a specific kind of independence, as inherently valuable as well as a necessity, with that specific kind of independence as proof thereof, for something like "adequate survival" in life. This is something that we need to think about, consider, and discuss. We need for people with Down syndrome to take the lead.

What exactly are we putting out there about Down syndrome, and about people with Down syndrome?

Maybe I am throwing the baby out with the bathwater and being unfair to my own child. That's a thought I'm definitely considering constantly as I muddle along on this path of parenthood. I want to look at this, as I do most things, from all angles, and I want to do right by my kid and others with Down syndrome. There's also the chance that I'm telling the world that "people with Ds count, and that we want more for them," by not buckling under the pressure to sign someone other than myself, who really should have her own say about this once she's able, up for something that just might end up reinforcing perceptions of her as a lesser being who should be treated, fixed, and improved or at least mitigated as soon as possible.

I'm not inciting a revolt against the registry, I'm simply telling you why I personally find it difficult to jump in head first, especially since I don't have my daughter's guidance on this just yet, into those murky waters that end up splashing all over mainstream news and thus greatly shape thinking and eventually the way that people with Down syndrome will be viewed in society, professionals and researchers included, and why I think the entire foundation of the registry, the process as well as the forces that brought it about need much further consideration. I am outlining my concerns in response to the, frankly rather ridiculing assumption that I'm either "overwhelmed" by paperwork, or that I find the registry "creepy" or "complicated" in some Big Pharma conspiracy-theory way, since I haven't signed my kid up yet.

I'm not denouncing the registry entirely either, I simply think that instead of our gushing support and guilting rhetoric to round up participants, it would be nice to see pressure placed on those consortium members who are, after all, the representatives of those at the center of this, individuals with Down syndrome. For them to keep listening to those they represent, and to actively constantly assess whether what's happening is in their representees' best interest, and how it will influence all areas of their everyday existence in society.

That's not something I've witnessed at this point. I sincerely hope I just haven't been looking hard enough.

Checks and balances aren't in place with the registry just yet. Fundamental concerns remain largely unaddressed. Certain efforts seem misplaced and misguided. I'd like to see more discussion about the basics, about the directions of research, about consent and need. About agency and voice. About people with Down syndrome, not about "families living with Down syndrome."

Here's a story you might find interesting (by which I mean horrifying): Forced sterilizations of "feebleminded" people were carried out in the US in hopes of eradicating said "feeblemindedness" and creating a kind of a super race. A public policy that was cited by Nazi doctors, in their defense, during the Nuremberg trials.

Are we still hung up on a super race, a member of which never needs assistance with anything? Just not actually using the words super or race, but independence, intellect, and productivity instead? Where does medical stop and social begin and vice versa?

#WDSD14

Today is World Down Syndrome Day.

Today is not about creating or spreading awareness (FYI, not really about awareness, like, ever, yo), not even really about acceptance (although every single day should be about active acceptance, so there's that. Heh).

Today is about celebration, about pride, about culture, about rights.

About the kind of celebration of difference that doesn't try to see past or beyond the disability by ignoring it completely or by only searching for similarities, but the kind that views it as an accepted part, sometimes a defining one if the disabled person so chooses herself, of a person. The kind of celebration  that acknowledges and respects a disability, like it acknowledges and respects someone's race, sexual orientation, and chosen gender. The kind of celebration that embraces how a person chooses to define herself.

A celebration of taking PRIDE in one's self. All of one's self.

Today is not about how regular we all are - and we are, most of us anyway, I and my daughter included - but about enjoying life, and having access to learning and community. What these self advocates speak of in this clip:



Today is about access to healthcare and not having one's health concerns brushed aside with "We often see this in Down syndrome." What this clip speaks of:



Today is not about my kid being the best advocate for acceptance, meaningful inclusion, and equality for people with Down syndrome just by living her life or some such esoteric babble (Another FYI, it never is, she's not your campaign until, if ever, she wants to be), or about us as "a family affected by Down syndrome" (Yup, you guessed it: never is), or how our life looks or is, or, deep sigh, about "advertising" for Down syndrome to stall abortions or something, another deep sigh. Nope.

Today, or any day really but you know what I mean, is about recognizing, talking about, accepting, celebrating, and accommodating for Down syndrome. Today is about people with Down syndrome.

"I have Down syndrome, and I am proud of who I am," say the self advocates on the first clip. Not a single eyebrow should be raised, not a single scoff heard. This should not be, and isn't, a radical idea.

I want my daughter to be able to say "I'm proud to have Down syndrome."

That's what World Down Syndrome Day is about.

Mother Nature thinks so too and gives Down syndrome two thumbs up:



One final thought, because it's eating me up. The same one I had last year also so maybe I should scream it today?

WHAT DO FUNKY SOCKS HAVE TO DO WITH DOWN SYNDROME? WHAT? WHAT IN THE...? WHY...? Can we have a reasonable explanation, and can someone reassure me that regardless of all evidence, associating strange socks with Down syndrome isn't counterproductive to acceptance after all, please? And why does supporting this absolute incongruence seem to cost money? Anyone? No, really, ANYONE?

Thought so.

I'll see your socks and raise you pride. For free. How's that for a good start to a celebration?

Prenatal testing and "debilitating" disabilities

When William Saletan writes about abortion, reproductive rights, and the political right in these words:

"So I cling to the mushy, unprincipled belief that while there ought to be fewer abortion decisions—and there would be, if pro-lifers would magically redirect their energy from abortion bans to birth control—when those decisions arise, they’re best made by the people directly involved."

I can't but agree wholeheartedly. There isn't much I'm going to say about abortion in this post.

Because aborting fetuses with Down syndrome is not about abortion, not about whether it should be legal, how far into the pregnancy it should be legal, whether it should be allowed especially or denied especially because of the fetus having Trisomy 21.

Eugenics is not about abortion. Attacking abortion will simply lead us astray, lead us to ignoring the reality in play and the real, actual people who are already here. Abortion is simply a (legal) means for a eugenicist mindset. Targeting the means might feel appropriate to many, especially to those who feel abortion in general is wrong, but that won't allow us to even scratch the surface of what is at issue here - the devaluation of some members of humanity by other members based on random strangers' internalized arbitrary standards, as well as the process that leads to that internalization.

Even the eugenicist mindset is not the root of it all, it's simply the product of these value judgements placed on certain individuals, sometimes based on perceptions of health or longevity, often a kind of assumption of productivity, other times an estimated 'cost' to society, spiritual, mental, or material, at times even esthetics, and many other "reasons" all of which, once put through the wringer, come out on the other side as casuistry and reliance on what are essentially very flawed and very antiquated pieces of "reasoning" and "logic".

Although I'm well aware that they exist, I'd be hard pressed to find an individual in favor of exterminating everyone with Down syndrome. Because, when I put it like this, we'd be talking of genocide, something akin to Hitler's T4 campaign. Not many people approve of the tactics used by the Nazis in their quest to 'purify' the Aryan race. There exists a clear denunciation and abhorrence of Nazi ideology in modern societies. We seem to agree that Hitler's logic was faulty, his aims delusional and disgusting, and stemming from a place so dark that many of us don't care to identify it as a place that could exist in a person.

Yet, in reality, when we really look at how we're proceeding here as humans, at the ways that disabilities, and especially Down syndrome, get talked about, when we consider how language shapes our perceptions of the world, how it doesn't necessarily reflect anyone's lived experience but takes its cue from a standard presentation, how it can be used to favor a medical professional over a passionate person, parent, or sibling, it can leave us gasping for air when we follow its pointers to their logical end.

I don't think we give "just words" enough credit in the maintenance of the oppressive systems that plague most of our societies today.

In the past week (two weeks now since life got the better of my editing and publishing intentions) I've encountered two articles about prenatal testing. Both mention Down syndrome. Both are from respectable mainstream sources.

Al Jazeera America published a piece by Kat McGowan titled: Will new prenatal tests scare parents into bad decisions? 

NPR ran a story by Rob Stein titled: Blood Test Provides More Accurate Prenatal Testing For Down Syndrome

(Lisa at Life as I Know It came across a third article and blogged about it.)

McGowan's piece does not directly deal with testing for Down syndrome, but focuses on a specific sex chromosome aneuploidy, Klinefelter's syndrome. However, possibly because Down syndrome is the most well known of aneuploidies, she uses it to set up a kind of a severity hierarchy of aneuploidies. She attaches the term "debilitating" to Down syndrome in a much greater degree than to Klinefelter's syndrome. "[Sex chromosome aneuploidies] are nowhere near as debilitating as Down syndrome." she writes. A photo caption for the story talks of "...Down syndrome and other serious health problems…" Several times McGowan refers to phenotype as "symptoms" as if both SCAs as well as Trisomy 21 are diseases.

Voila. Regardless of what the headline of the article purports is the question the article addresses - whether expectant parents might be making decisions to terminate a pregnancy in the case of an aneuploidy too rashly - in fact, our beliefs that all aneuploidies are bad news, and of all those aneuploidies some are worse news than others are reinforced by word choice. It is set up as fact that all aneuploidies debilitate, as in "make someone weak and infirm", but some of them, and I can't but wonder whether what we understand as intellectual disability isn't one of the major defining factors in arriving to this degree of debility - for McGowan specifically in this instance, but really for the cultural constructs she draws from to make these broad statements on disability - make someone even more "hindered, delayed, or weakened" than others.

The article begins by all but picking up a paint brush with red paint on it and repainting the edges of that box with the giant tick-mark in it that says NORMAL in bold.

But what is normal here? Who are we employing as this non-debilitated example whose life is smooth sailing and not hindered, delayed or weakened by a condition?

Well, of course a person without an aneuploidy. Duh. Or in the specific case of this article, a person with a sex chromosome triploidy that can be fully remedied to practical nonexistence if only detected early enough. Double duh.

Disability is bad, yo. Normal is the new (and the old) black.

However, the only guaranteed difference between a person with and a person without an aneuploidy is the number of their chromosomes. There are no guarantees on what those chromosomes are doing for their owner. intellectual disability is not unique to Down syndrome. Heart conditions are not unique to Down syndrome. Celiac disease is not unique to Down syndrome. Neither is leukemia. On the flip side, high intelligence is not guaranteed in a state of no aneuploidy. Neither is a happy marriage, a paying job, chocolate, good books ad libitum, great friends, being able to stick to your budget, or you know, living a happy, long life while contrasting oneself to those with a short life of suffering that is the unequivocal result of an aneuploidy.

The only guaranteed result of an aneuploidy are people who will have, or who other people will perceive to have a more difficult time functioning in a society that was specifically designed in ways that do not meet their needs, ignores those needs in favor of meeting the needs of a statistical illusion, deems those needs less valid in a multitude of theoretical as well as material ways, and justifies not meeting those needs in subtle ways through language, arguments focusing on an unchallenged concept of 'common good', access and its denial, and beliefs and belief systems.

If it takes you longer to process things, or if you are unable to easily comprehend whether someone's being sarcastic or earnest about what they're saying, or if you don't really understand what being sarcastic is all about and prefer to listen to the words and decode their literal meaning does that mean you are debilitated? Does that make you unhappy? Is debilitating the same as suffer?

Of course not. If someone whose condition debilitates them is unhappy with their life then Down syndrome is not a debilitating condition. At least statistically.

Yet, the word 'debilitating' and its connotations and baggage are there in the article, as are other words that subtly work to first introduce and then reinforce how anyone reading the article will view aneuploidies in particular and disability in general. The language subtly props up the medical model while downplaying the social model. The language sticks close to the notion of people as pathologies, instead of everyday, regular individuals.

And we read on, while we read in, take on board, integrate, let shape and set in.

Without our even truly realizing it, we are steered towards the understanding that disability is something to be fought, eradicated, in need of curing or fixing. We are lead towards thinking that all disability equals suffering and aborting an 'abnormal' fetus is a morally, not only acceptable, but the caring parenting choice to make.

I did say parenting choice. When disability is concerned even murder is sometimes cloaked in the language of parenting and love. It's a slippery slope my friends. Eugenics and what we consider especially despicable about Nazi ideology can be found right there, right within the word "debilitating."    

Abortion is not the problem, neither are the prenatal tests, the problem is that both are painted as the compassionate thing to do, for the better, in order to ensure the 'natural progression of things', when it comes to providing a balanced view in the mainstream, run-of-the-mill media (I'm not even touching on the arguments that rival Hitler's or the kind of people that peddle them, or their adversaries who present us with the equally disturbing pedestal ableism opposition). Although in the case of the prenatal tests discussed in these 'balanced' articles, the notion of knowledge and information being good things is almost always invoked, and rightly so in my opinion, these are almost always made to signify the medical aspects of a genetic variant ("1 in 2 children with Trisomy 21 will present with a heart condition."), and how to plan for those medical "adverse health effects." Information as power is almost never invoked in order to foster acceptance, culture, or community for anything but "peer support."

The language in these articles, and these articles are only examples, illustrate the greater issue, and are in no way especially horrifying cases, remains deeply ableist and problematic. And the intent, if there ever was one, to present something multifaceted and complex, is crowded out by the dogma inherently there in the chosen language. No measure of considering context or a multitude of potential meanings will stop the internalization of the construct brought on and reinforced by the reading.

Reinforcing an existing fallacy will do nothing to affect change. It will do the opposite. The paradigm won't shift if we turn the other cheek or appreciate the intent.

McGowan's piece leaves the reader on a hopeful note, which I greatly applaud, but that contrasts with the language employed in the piece. "Better information for parents and better-trained genetic counselors could help broaden social definitions of what’s normal. After all, everyone has minor deficits and imperfections. 'It could widen the margins of tolerance for what’s an acceptable human condition,' he says." she writes quoting a bioethicist. However, the worry the headline of the article alludes to is not a concern over someone aborting a fetus with Down syndrome because they haven't been provided enough information about the variant. Somehow Down syndrome doesn't seem to be included even within this broader definition of "acceptable human condition."

The story on prenatal tests by Stein, published on NPR, seems to be more concerned with how accurately the tests actually detect Down syndrome in a fetus than anything else. The main focus is the fear that women will end up terminating a "perfectly normal" pregnancy because of a false positive and the hope that these tests will lessen the number of "unintended miscarriage[s] resulting from a procedure that didn't need to be performed in the first place." There is one line about anti-abortionists, after which the article mentions "Advocates for people with Down syndrome" (my emphasis) and their concerns with the prenatal tests, as if people with Down syndrome have no agency or voice, no opinion on prenatal testing for the thing that they share, that they have, that is a seminal part of their lives. That only they can ever definitively know.

Journalistic balance and different points of view won't truly emerge by presenting the medical and official arguments in a 'sophisticated' and 'factual' light while presenting a medical expert, Dr. Skotko, as making an emotional plea. He is one of the world's leading experts in Down syndrome, yet all too often, as happens in Stein's piece, he becomes the passionate, loving sibling (which he is, but it doesn't diminish his expertise as a doctor or his authority in matters dealing with Down syndrome.). He is  allowed to express his brotherly love in a way, I have to note, that stinks faintly of 'a sister only a brother could love' type of thinking, to readjust a cliche, a kind of a 'well, what is he supposed to say?' type of a deal. A message underscored by a quick return to the real problem with the tests: "but these tests might enable for someone to terminate for non-debilitating reasons." Sigh.  

It doesn't seem to me that it is possible to provide a balanced article when the rhetoric employed is biased, prejudiced, and ableist language, that implicitly designates someone's chromosomal count as inferior, unnatural (Yes, they engineered my kid in a lab, she came in a box with a fancypants manual. O.o), and someone's lifespan and illnesses and issues related to that life as much worse than the illnesses and issues related to the life of a typically developed person.

I'm now going to leave you with a sentence that I'm stealing from a Slate article that I enjoyed, but can't remember what it was about and thus can't find again, but that influenced this post and made me realize how much that post that I wrote way back when we were living in South Africa, about renaming places that had Apartheid-related names, made sense, and how long I've been mulling on this: "And out of the ground the LORD God formed every beast of the field, and every fowl of the air; and brought them unto Adam to see what he would call them: and whatsoever Adam called every living creature, that was the name thereof."   'Naming' as owning, as having dominion.

Here's the Slate thought:

"Symbolic change and practical change have a symbiotic relationship"

No point? On point?