Honest question: is it ableist to acknowledge that dwarfism, like congenital deafness, is abnormal? And that in general, quality of life is demonstrably better without conditions like those? To be clear: abnormal is not subnormal. Society should of course accommodate and treat as equal humans of every shape and size. But trying to say that this sort of treatment is ableist per se seems illogical. Trying to reduce the incidence of (or effects of) achondroplasia takes nothing away from all the people who have already been born with, or grown up with, its effects. Or am I wrong, and the mere existence of treatments like this automatically implies that people with achondroplasia are inferior?
It is ableist to automatically classify any physical or cognitive condition outside the “norm” as a bad thing that should be fixed.
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Right, I get that. I guess what I’m trying to determine is if creating a treatment for achondroplasia (or any genetic condition, really) and making it available is per se equivalent to classifying that condition as something that should be fixed. Because that’s what its opponents seem to be implying.
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Maybe some people in general think that, but is that a prevalent opinion of people developing technology that may give a deaf person hearing? I don’t think so.
If someone came up with a cure for my disease that would make my leg less (partly) crippled and worthless, I wouldn’t view it as an affront to me that somehow I can’t function in society or life a less rich life because of a gammy leg.
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It doesn’t help when people frame the situation as “researchers have developed a cure for this abnormality!” instead “researchers have developed a drug that may alleviate some health problems associated with this genetic condition.”
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There is what people who can hear think and what the deaf community thinks.
You’re assuming that people who are deaf feel like their quality of life is diminished by being deaf in the same way your leg problem has impacted your quality of life. They do not believe that they have diminished quality of life in the same way you do. It’s apples and oranges. 
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But I’m not assuming that. Most people born deaf are happy the way they are and don’t have a desire to change. But some may. And others who lost their hearing later in life may want it restored as well. As the poster above said, I agree that providing the option isn’t ableist. YMMV
Most people who have NF don’t have any detrimental symptoms either. It is a genetic condition, and we are born with it just like people who are born deaf. Most people live long full lives and it doesn’t get in their way. A bunch of people have it and have no idea. But their offspring might have a completely different case of severity.
So people working on the issue isn’t doing so because there is anything “wrong” with people with NF, they are doing so to help the severe cases which can include pain, deformation, and death.
Similarly I don’t think anyone working to help deaf people or dwarfism are saying anything is “wrong” with them. But to give the option to possibly increase quality of life.
Being deaf isn’t a great analogy, because there aren’t conditions that it will cause later to shorten your life span. Certainly you can live your whole life deaf and it won’t affect your life span or comfort. There is with some cases of NF and some case of Dwarfism.
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This makes me think of the american pediatric establishment trying to stigmatize short children, and getting patents to give them growth hormones to ‘treat’ this new ‘disease’. Or the plastic surgery business trying to turn small breasts in women into a disease that can then be treated by plastic surgery.
After all, changing the individual is considered trivial, and changing society is hard. Pretty clear where our priorities should lie…
/s
IMHO, no. There is the consideration that the existence of a treatment can result in social pressure to choose it, compounded by the profit motive of the pharmaceutical industry, but that’s a problem with society, not with individuals having a choice. Ultimately I believe we should work toward an accommodating and inclusive society where individual bodily autonomy is fully respected.
As for children, like all things to do with child rearing, there is by necessity a certain amount of choice their guardians must be entrusted to make for them. Were it my child, I would seek competent medical advice about how any given condition were likely to impact quality of life independent of social norms. For example, a hypothetical last person on earth might still have their quality of life diminished by chronic pain. But I would be very hesitant to alter any child of mine to fit the proverbial Procrustean bicycle.
I hear you, but I also think that’s the exception, not the rule. I realize the news cycle takes a toll on one’s faith in humanity, but I’d caution against assuming parents aren’t trying to do right by their children and that I, internet rando extraordinaire, know better than they how to raise their kids.
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And the people who aren’t are capable of making choices for them and their families. No one is saying that they can’t or should be prevented… same with people who lost their hearing later in life.
Sure, but again, I still think it’s apples and oranges. Presumable there is some sort of community around the specific condition to act as a support group? That’s what the deaf community does, and I assume that they have these debates internally.
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But what makes it easy to think that a community of people with deafness or dwarfism would think such things?
White people get skin cancer a lot more than black people*. If someone brought forward a genetic treatment that would turn pale-skinned people into dark-skinned people and said, “Why aren’t white people giving this to their kids, don’t they care about their kids getting skin cancer?!?” I think we wouldn’t have any trouble seeing that the issue is more complex. I just want everyone to afford people with dwarfism or deafness the same courtesy.
* CDC sheet I found put skin cancer in white Amerians at 32.3 per 100,000 and in black Americans at 1.0 per 100,000
I think unfortunately “abnormal” is a hell of a loaded word. If you’re like, “Hey, look at this bell curve that human heights fall on. Now look at this blip down here that results from a specific genetic condition, that’s very literally a place where heights are not distributed normally,” then you are on pretty firm ground. But I’d avoid using that word.
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My cousin died recently from complications due to achondroplasia. He didn’t make it out of his 50s (that side of the family is very long-lived, this condition considerably reduces lifespan). His last ten years were rough, he could barely move and was in a state institution. He was a great guy.
I wish I could ask him what he thinks, but I’m pretty sure he’d be in favor of treatment, even though he never complained about his condition or let it hold him back.
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Some of that may be the fault of diagnosticians, and those who teach them.
It’s a tough job to discern a skin condition if you’ve been trained to look for features that only present in light coloured patients.
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In my mind this isn’t really comparable. This specific form of genetic dwarfism often has serious medical complications and results, on average, in a ten year reduction in life expectancy vs. people who don’t have this gene. Whether or not individuals with this condition choose to pursue any form of treatment, it’s a pretty clear-cut and well-defined medical condition, and that will still be the case if our society is ever successful in ending stigmatization of it.
In contrast, the ridiculous medical guidelines suggesting that otherwise healthy kids who happen to be in the bottom 3% on the height spectrum should be prescribed growth hormones instantly medicalizes a condition that, by definition, 3% of people will ALWAYS have, no matter how tall any given population of people happens to be. It’s a great way to ensure that you’ll never run out of customers for your growth hormone.
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The specific issue with the deaf community is that they are precisely that. They are a non-genetically defined ethnicity in that they have their own language and their own culture that is largely distinct from other ethnicities. From that perspective, it might be easy to see that the development of a cure for deafness from early childhood might seem akin to eliminating an ethnicity, which in other circumstances we would call ethnic cleansing or genocide.
Hell, Muggsy Bogues (5’-3") was in the bottom 2% of the height spectrum for American men and he had a whole career in the NBA.
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That’s an interesting problem. I don’t have these conditions (or children!) so my gut reactions are probably irrelevant. I do, however, have ancestors who literally attended one of the worst examples of “Native schools” in Canada, where the goal very much was the extinction of the divergent culture itself. One of the lessons from that debacle was finding ways for the culture to be less insular and isolated, and I wonder if more could be done to expand deaf culture beyond those who are physically deaf - thereby decoupling the fate of the condition (and a future where it may be curable) from the culture itself, and if such a thing were possible in this case as well.
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Dr. Savarirayan offered a moving example of what longer limbs could deliver. “We’ve got 12- and 13-year-old girls who now for the first time can do their own feminine hygiene and don’t need to be helped by someone because their arms are longer,” he said.
I would say this is the biggest argument to use the drug. If a condition prevents someone from something as basic as taking care of their own body…
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From experience I can say that when part of your existence is painful (whether physical or mental), getting some control back is a big part of having a healthy emotional state. The best things I ever did was to discover I could fire lousy doctors, find good ones, make reasoned decisions about drugs I’m taking, and so on. (Of course, in the US our lousy health care system makes this incredibly difficult for a lot of people.)
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