Thursday, March 6, 2014

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?


  1. Sigh. I too have said much on this issues. Including an essay which I made available on Kindle (and will be free over 321 so if you're interested let me know and I'll send the link) But - This is not an ad. This is just to say...Yup. It's exasperatingly hard to articulate.

  2. Excellent article, excellent points. I very much appreciate how you manage to dig under all the crap and get to the heart of the matter.

  3. El primo use of statistics regarding happiness. We all know, you can't argue with statistics. They are all "sciency" and stuff. And it becomes apparent who is deciding about whose quality of life.


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