Monday, 23 February 2015

#Microblog Mondays: risk versus possibility

1) Prenatal screening can detect the risk of delivering a baby with Down syndrome.

2) Prenatal screening can detect the possibility of delivering a baby with Down syndrome.

They mean basically the same thing, but not. We welcome possibility, while we shy away from risk.

As an agnostic feminist, I have been a lifelong supporter of women's right to choose. I have also been a lifelong advocate for - celebrator of! - the plurality of human experience. We like to think of ourselves as moving into a world of ever more respect for rights (of women, of minorities, of various 'others') and respect for diversity.

And so, like others before me, I struggle with the contradiction inherent in the fact that as our societies become more embracing of diversity, we are also, thanks in part to more accurate prenatal screening (which is not accompanied by accurate education), adopting ever more normative standards of what that diversity should look like.

By some estimates, upwards of 90% of pregnancies where a risk/possibility of Down syndrome is detected are terminated. There is a real chance that for people like my daughter, a day will come - and soon- when they will wake up to find themselves the last of their kind.

While I suspect that most people will find it hard to understand how I can say I have come to love that extra chromosome in all its unique, confounding, divisive glory, it seems a little sad to me that we're denying ourselves opportunities to live with this diversity: diversity of experience, genetic diversity, human diversity.

I can't help but think it's a shame that in our avoidance of risk (what life worth living doesn't involve some level of risk?) we are closing ourselves off from all kinds of possibilities.










Written as part of Mel's Microblog Mondays. Check it out here to participate.



13 comments:

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    1. Thank you :) I get a little wary of posting stuff on this topic, largely *because* I know there is so much misinformation and potential for misunderstanding. It's nice to feel my words have been well-received!

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  2. thank you for this. Like you say, life involves risk and parenthood is no exception! I understand the desire for a "perfect" child - who doesn't want that? but it is a subjective concept and if you really scrutinize it, doesn't make a lot of sense. If one had a genetically normal child but she was disabled somehow in an accident, would she be less of a person? etc. I do think that everyone considering parenthood should consider how we would feel if a child was born disabled, and more importantly *why* we would feel that way. The answers might be surprising. Glad to see you writing again - I've missed your entries!

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    1. I am in complete agreement that anyone seeking parenthood should confront these possibilities honestly with themselves, and that we'd all be better for it if everyone did. Unfortunately, we all know how lots of people out there are resistant to self-reflection of this kind.
      Your analogy is precisely the kind of scenario that has often come to my mind since becoming a mother to a developmentally challenged child, and hits close to home too: I was born healthy and developed typically for the first 11 years of my life, at which point I was diagnosed with an often fatal form of cancer, which at one point was prognosed as terminal, and which has left me with a physical disability and many years of hospitalisation and challenge - not that I've allowed it to limit or define my life in any way! The point is, if there were a predictive test that could have somehow indicated a risk/possibility for such an eventuality (among lots of others that an befall a life), would we start eliminating those too? Hypothetical of course...The question seems to be that as a society we have allowed scientific advance to foster the fallacious notion that we can predict and control all kinds of eventualities that are beyond our control; that indeed we can shiled ourselves from hardship entirely. But my conclusion is always: would I even want to?
      The whole discussion is anyway skewed by the fact that screening for Down syndrome is one of the few conditions that is so easily detectable. There is a disproportionate focus on Trisomy 21 not because of how much the medical/scientific community *knows*, but precisely because of *how little* it can predict or identify.
      Anyway, all food for thought - thanks for helping me to tease out all these ideas! And as always thanks for reading :)

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    2. "as a society we have allowed scientific advance to foster the fallacious notion that we can predict and control all kinds of eventualities that are beyond our control; that indeed we can shield ourselves from hardship entirely."

      I think that says it all exactly. I don't know if one day we will be able to use science and technology to exactly predict what conditions or vulnerabilities a person will have in their lifetime. I somehow doubt it - the ways in which genetics and environment interact is too complex IMO to predict. But maybe that doesn't matter so much as our THINKING we can predict it and therefore control it; perceptions influence actions. So being able to screen for and potentialy terminate a pregnancy that is Ds may lead someone to assume that they have control over their child's genetic (or overall) health - but really that control is an illusion. I work with disabled children and most of the conditions could not have been diagnosed in pregnancy or even infancy and early childhood.

      One thing I do like a lot about the internet and the blog community is that now we can learn about so many people's stories. Diagnostic medical information is necessary but it doesn't teach how to live a life - and stories including those told on blogs CAN help to do that. Which is why your perspective is so valuable!

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  3. I love all your posts, and this one is no exception. Well said. Celebrate!

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    1. Thank you so much! Your support is awlays appreciated friend :)

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  4. I think where a lot of this thinking comes from is the history behind Down's syndrome. Until within the last century, the average lifespan of an individual diagnosed with Down's was 12 yrs old. Due to modern medicine, that has greatly expanded (60 yrs on average), but there are still complications that come from having an extra chromosome.

    The way I chose to look at this is the way I chose to look at people in general: we all have something and we are all more than our genetic code. I've met some amazing people who have different conditions who can light up a room and I've also met some utter scumbags who are supposedly "normal."

    So, here's to Girl Wonder. May she continue to be a beacon.

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    1. Your point about 'complications of an extra chromosome' is only partly correct. I think that as with word choice, in truth the story of life expectancy is also one of subjective perception as much as it is of 'modern' medicine. More significant in this change than any medical advances is simply the fact that the medical community (and society at large) now increasingly see people with Ds as not only worthy of care, but as having the potential to lead long and productive lives. More time and attention to is now paid to supporting and improving the quality of life for such people...which is what makes it so sad to think that with dwindling numbers, all these advances - of attitude moreso than technology - may be lost. The impetus simply wouldn't be there anymore.

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  5. Very well said. I used to work with families of children with a broad range of differences and developmental delays. The thought of a world without them in it is heartbreaking, indeed, and yet I know women/families make that choice all the time. I'm sure it's not done lightly, but I wish more people could embrace the possibility of diverse experiences within their own families. I think, as with many, many things, it's also a matter of education vs. ignorance. My husband, who has very limited experience with people with developmental delays, has a completely different opinion on the matter, and we've had heated debates on the choices each of us would make in this hypothetical situation. There are a lot of gray areas here, for sure. Regardless of the wider issues, I'm happy that Girl Wonder brings you and H so much joy, as every child should. (Sorry for the novel-length comment.)

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  6. I love thinking of it as possibility versus risk. Many thanks for putting this out there. It's good to hear your voice. Now, we just need pictures of GW/T ;)

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  7. Wow. This post kind of blew my mind and opened my eyes at the same time. I confess I haven't thought about the statistics of pregnancies terminated because of the possibility of Ds. It's a lot higher than I would have guessed. How sad. And yes, how much richer our lives are to have all kinds of diversity around us. The beautiful little Girl Wonder illuminates the way for us all <3

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  8. I often wonder what some people would do if they didn't have that screening test. We all want to have a "perfect" child but frankly there are no guarantees in life, are there? That doesn't stop people from trying to bend the odds.

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