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Assumptions, Genetics, and Disability

March 29, 2013 1 comment

This is a what happened when I got called on some assumptions I’ve made so many times and for so long that I wasn’t even aware of them anymore… and when they were brought to my attention, I was amazed to find out that they are diametrically opposed to much of my current philosophy about disability. Hello, hypocritical brain, where have you been hiding yourself? In short, I got dumped on my metaphorical ableist ass. These learning moments are… fascinating, fun, no little bit embarrassing, surprising as hell, and very necessary for my, you know, moral growth, or something high-and-mighty sounding like that.

So, the topic was congenital disabilities, and the fact that some of them, like Huntington’s disease, would be pretty darn easy to wipe out of our genome if only people paid attention to basic genetics and decided not to get pregnant if they carried these genes. Which, for some bizarre reason, I had classed in my head as entirely different from aborting a fetus based on prenatal testing that reveals a disability… something I finally came around to arguing against a few years ago, though I am still pro-choice in general.

I took some convincing on that topic, too. My ableism runs deep below the surface, all the more so for me because my own health, physical and mental, while not outstandingly poor by objective standards, has always been lousy enough to make me downright miserable, and the thought of inflicting my own experiences on another person horrifies me. Granted, I might feel the same way even if I didn’t have the physical health problems– a large part of the reason I’m not just pro-choice but genuinely pro-abortion is that I consider this a pretty lousy world to bring anyone into, and that’s speaking as an extremely privileged first-world white chick.

Now that I’ve spent a few years on solid treatment for my neuro-biology, it occurs to me that much of that viewpoint may be due to having been mentally ill since childhood. The world still makes me tear my hair out on a regular basis, but I haven’t considered it truly unendurable for quite some time now, at least not regularly. But when I did… how could I approve of anyone not only creating another life to subject to this life experience, but giving that life the added risk of extra pain and suffering above the standard that is any human’s lot by knowingly having a child with a genetic disability?

And there was my ableist assumption, hiding in plain sight. I’ve spent the past 2 years as a passionate defender of disability rights, shouting to the world that the lives of those of us with disabilities are only tragic if society insists on making them so, that no one has a right to judge the quality of anyone else’s life for them, that there are great gifts to be found in every facet of human variety.

And at the same time, I was thinking there’s no way I would want to live with something like Huntington’s disease (dominant gene causing severe neurodegeneration– if you get it, you’re due, sometime in middle age, to lose a lot of your mental and physical functioning and then die) hanging over my head. So why should anyone in their right mind ever have a kid with this risk attached?

Did I ever ask people with Huntington’s if that’s how /they/ felt about it? (Noooo… bad ally!)

I am grateful that my friend gave me the opportunity to ask how she feels about her own congenital conditions. I knew one of them was already a source of pride– she’s autistic, and the one who made me realize me outright that not only is autism not a bad thing, but I prefer people on the spectrum to off it. Her other congenital condition is cystic fibrosis, a poorly-named condition that carries some serious health risks and the need to take a metric butt-ton of medications, many on a daily basis.

What do I know about this condition, as a non medical person? I know that living with CF means spending quite a bit of time and energy on regular medical routines. I know that it isn’t a constant source of pain, but is a regular cause for certain concerns, and that it limits a few activities, though not many. I know this friend has a lot more energy and does much more with her time than I do. I know that she would welcome a cure, or at least a more permanent treatment than what is currently available.

But does CF, I asked her, confer any benefits, in her opinion, the same way autism does? Maybe, she answered, her experiences have added significantly to her emotional growth. I shouldn’t have needed her to tell me that– at ten years my junior, she’s sometimes more emotionally mature than I am, and is a passionate, thoughtful, and nuanced activist on multiple topics. I need only compare her to able-bodied peers to see that her experiences are key to these abilities (though not, I’m sure, solely responsible).

I didn’t even have to ask the obvious question: is she unhappy with her life? I already know that she isn’t. Her life is, on the whole, despite its stresses, a pretty nifty one. So why would she even consider denying a similar life to someone else? [My original wording here was problematic, and triggered some people as anti-abortion rhetoric. What I meant to say was, in what way would that genetic condition even weigh in on her decision of whether or not to have a child? I can think of 2 reasons it would– the concern of making sure she could afford the regular medical care that child would need, and the fact that her condition does carry a somewhat shortened life expectancy, which means she would have to take into account a higher-than-average possibility of dying before her child reached adulthood. But one aspect that I would NOT expect to affect her decision is that her prospective child’s physical experiences might be similar to her own.]

Plus… “avoidable suffering” as a reason not to have kids? Who am I kidding? You know what puts you at higher risk for a bunch of health problems including the possibility of experiencing brutal pain every month? Having 2 X-chromosomes– that is, being a biological female. What puts you at high risk of spending your life in a lower socio-economic status? Being born in America with dark skin– the darker, the more risky. Scared of risking your child facing horrible amounts of social stigma and a much higher risk of suicide or being the victim of a violent crime– don’t let them carry the “gay” gene!

Do any of these things– or spina bifida, trisomy 21 (Down syndrome), or a genetic predisposition to visual impairment– guarantee a harder life? No. Do they make it more likely… honestly, who knows? What relation is there between our physical conditions and our quality of life, beyond the basics of having our fundamental needs (food, shelter, freedom) met? Do any of us know? Can we?

Does this mean we shouldn’t keep looking for the genes that make cancer or diabetes more likely (incidentally, my friend also has diabetes)? Does it mean we shouldn’t screen for the more brutal stuff, the conditions that lead children to die well before they have a chance for any sort of self-determination? Does it mean we shouldn’t try to ease pain wherever we find it? I honestly don’t know. How much of suffering is essential simply to being human?

All I know is that the answers aren’t ever as easy as I once thought they were. And I know that to make assumptions about quality of life based solely on a genetic screening is to do a grave disservice to the infinite wealth of experience and potential that being human entails, and to the wonderfully varied and ever-surprising ways in which we use those experiences to learn, grow, and enrich our collective understanding of who we are as a species.

Thank you, friend, for bringing this to my attention.

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