Originally published at: https://boingboing.net/2020/09/24/a-new-drug-claims-to-treat-dwarfism-not-everyone-thinks-it-needs-treatment.html
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That is entirely true.
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The simple fact of the matter is this: These are two different issues, and anyone fighting either solution is a moron.
Prejudice and social problems for short people exist, and should be corrected wherever possible. Making some short people taller does not solve this, and it should still be fought for.
As TFA states, there are real-life medical issues caused by dwarfism. Wishing to continue to have such medical issues, and force them onto others, in some sort of misguided sense of “pride” when a solution presents itself is harmful. Anyone thinking that such a medical solution somehow lessens them as people is an idiot.
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I’m under the impression that there are often negative health effects that come with dwarfism. Does the drug not ameliorate those? It seems different from the arguments about cochlear implants or treatment for ASD, in that respect.
edit: TheRizz addressed my question somewhat above. I didn’t see it before posting.
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And yet Trump was elected by people who think that anyone who didn’t take the medical treatment is a lesser person. Maybe also the people who took the treatment too.
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There is more to this than just choosing to take the treatment or not.
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A friend of ours has a daughter that has this condition. Her spinal column has continued to grow where her spine (the bones) have not kept up. This causes pain and more. One course of treatment is to surgically remove top (if you are laying face down) parts of the vertebra to allow for more space, but that of course exposes the spinal column to harm/damage.
The pain has caused her to not be able to attend regular schools. Lets not talk about the problem with normal school restrooms etc.
She wants to drive someday but her projected max height is too short. She’s considered bone lengthening surgeries for this.
Pride in your body type only goes so far. When existence hurts, its not about pride. I believe if this becomes an option, she would seriously consider it.
context: this is in Canada.
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Yes, Mrs. Mills could get a $900 custom bike so her daughter could ride
Or couldn’t she just ride a kid’s bike that you could pick up at a thrift store for $20 or so? I realize that isn’t the only accommodation we’re talking about, but that jumped out as a poor example.
The comparison to the Deaf community seems apt. My understanding is that Deaf parents commonly opt not to get cochlear implants for their children, but since hearing parents generally make the opposite choice, the population of Deaf people in the first world can be expected to dwindle, or at least decrease.
Wealthy parents are already paying off doctors to “diagnose” and prescribe growth hormones for their average-heighted kids.
Appreciate the insight. I hope options are found (this or others).
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Just because an adult is short in stature doesn’t mean they want to spend their life riding a bike designed for young children instead of (say) a fully equipped street bike with gears and hand brakes.
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Has anyone told them that is a really bad idea? If your body is already producing and reacting to enough HGH, adding more can cause health problems.
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Some people with dwarfism are completely healthy. Some have debilitating symptoms not limited to the ones listed. Pride is a pretty stupid reason to live in pain or die.
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Not to mention that the body proportions of an adult with dwarfism are usually different from a child of the same height. Leg and arm length relative to torso length do matter for the shape of a bicycle frame, shape/height of handlebars, etc.
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One of the things that pisses me off about life – aside from the idiocy of my species – is the tyranny of nature. I find our inability to determine the fundamental characteristics of our lives to be offensive. Nature determines the shapes of our bodies, our biological sex, the basis of our intelligence and creativity, and how long we’re going to live. I look on the drug in question not so much as a cure for a disease, but rather a means by which individuals can exert more control over their lives.
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No, it’s a fine reason, in my opinion. It becomes a problem when people are forcing their children to live in pain or die because of their misguided pride.
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This is a fascinating subject to think about in the abstract, when you consider that improving the health of the next generation would potentially result in the extinction of a vibrant subculture. I struggle with the (real life) question of cochlear implants, since they can have the effect of severing a child from their parents’ culture. The comparison with boarding schools for Native youth is brought up, implying that the goal is to extinguish the deaf culture in the US, rather than offer a less limited life to the next generation, is often made. Once you leave the abstract, it becomes agonizing in real life. I don’t think there is a universal answer, and as a mostly able bodied (the years have takes a certain toll, but…) guy, I feel exceptionally uncomfortable imposing my judgement in these situations. My current approach is to lay down the options and let parents make the call.
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As I understand it, don’t some forms of dwarfism also come with a shorter life expectancy and other health issues? If so, I think I would look into treatments if my kid had it to give them the best shot they can have. YMMV.
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Fair enough. How about “your pride is a stupid reason to let someone you are responsible for suffer or die. And pretty shitty.”
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I think that is unnecessarily harsh. My experience is that parents generally make the decision that they think is best for their kids. Now, how they make that calculation can be questionable, but the intent is usually good. I could offer a hypothetical. If someone offered to have your kids raised by a benevolent billionaire who would assure every need was met and give them options you never could even imagine, would you go for it? Even if the trade was that they would not be able to relate to you anymore? (This was the argument made for the Native boarding schools, of course) I feel for these parents, but I don’t judge them. I can’t really understand where they are, from where I am.
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Of course, but they do it anyway. If Vosoritide works for ordinary kids the wealthy will soon be flocking to it too.
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