I just wish this wasn’t an either-or choice.
If I had access to a drug would make me twice as tall (and improve my breathing?)… I don’t know if I’d take it, but at least my choice wouldn’t be made under duress, I wouldn’t feel coerced by a society that refuses to accept me as I am. Disabled people deserve that same freedom of choice. To choose to alter their body or not so as to fulfill their own self-actualization, and not so as to meet the stringent ideal of being “able bodied.”
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Had a friend who died young because of those side effects. Not giving him a drug that could have prevented that out of pride would have been evil. Antivax parents. Faith healing parents. No-mask parents. MMS parents. They all may say they are doing what is best for their kids, but they aren’t and wouldn’t in a [reasonable] world. But in our world they are in the ascendancy.
I am just tired, tired to death of this.
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Yeah, being a biological entity just sucks ass.
That people with dwarfism should have an option to take a treatment if it can ease some long term health consequences. I certainly don’t view them as lesser or lacking, and if someone decided they had no interest in it that is their right and i understand that position. Dwarfism can certainly affect someone’s health in a big way so i see the treatment as a good thing, and it’s not like people would be suddenly forced to take it.
Still its likely that the treatment won’t be able to magically fix every potential problem that comes along with dwarfism, but overall i see it as a benefit
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Everyone but the people who are profiting from it.
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If you see someone who is unwilling to treat their child’s life threatening medical condition because a side effect of the treatment is making their child taller, then I can see why you’d take issue with that person’s priorities. What I’d like to add - not putting any words in anyone else’s mouth, just saying my own piece - is that if faced with two possibilities:
- People with dwarfism are predisposed to care less about the wellbeing of their children than taller people; or
- I’ve made some kind of mistake in understanding this situation
I’d recommend that anyone strongly consider (2).
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A bike, of uncertain reliability, built for a child too young to understand gearing, that may fit her stature, but not her proportions.
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For some people with achondroplasia, however, this sends a message that their bodies are broken and in need of a cure — not unlike the way that some people in the Deaf community feel towards cochlear implants.
Not all deaf people are born that way. My father lost his hearing as he aged, at the same time as developing Alzheimers, so learning sign language was never really an option for him (and would have been a huge strain on us, his caretakers). Without cochlear implants, he’d be mostly cut off from the world and either a mental vegetable or dead by now. I wonder what they would have to say about that scenario.
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I suspect that the deaf community is well-aware of the fact that not everyone who is deaf is born deaf.
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And as he was never part of their community, they probably would not have an opinion at all.
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I discovered this image of a bike made for a child with dwarfism. Notice something different?
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This is a great read on horizontal cultures that brings awareness and empathy to those who would rather strengthen their community rather than struggle to adapt to an otherwise hostile “normal” society .
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Honestly, it ought to be self-evident that there wouldn’t be a market for the expensive bikes custom-built for people with dwarfism if off-the-shelf kids’ bikes met everyone’s needs.
That’s like telling a 50-year-old bank manager to look in the children’s section for a business suit instead of paying for a tailor.
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I don’t imagine that they make professional business suits for girls, so that humiliating notion might not even be a possibility. (To say nothing of certain changes in shape.)
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Okay, take away the first sentence. Point still stands. This technology literally saved my father’s life. For him, at least, it absolutely WAS a cure that he needed to a condition that was destroying his ability to function. The change was miraculous. To say that the mere existence of cochlear implants is somehow bad or derogatory toward people who cannot hear is to discount his experience and say that he doesn’t “count” as Deaf, which is why I added the first sentence to begin with. Should the world be more accommodating to people who are deaf or have dwarfism? Absolutely. But to say that it’s ableist to even give people the option of hearing, or to prevent back pain associated specifically with dwarfism? Seems like that’s ignoring a whole lot of people’s experiences and desires.
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And that’s great! No one wants to take that away from him or your family. But not everyone who is deaf has the same problems or experiences as your father.
But as @docosc he wasn’t part of the deaf community in the same way people who are born deaf and live within the institutions that they’ve built up over the decades to serve their community.
We agree on that.
That’s not what is being said. It’s more a case of assuming that deaf people can’t function in society or that their lives are less rich because they are deaf.
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This drug, like any drug, almost certainly has potentially harmful side effects, the full extent of which may not be known for decades. So it’s not like parents of children with dwarfism have a simple either/or decision to make here.
How about we start under the assumptions that
- Most families facing the decision about whether to use this drug are at least as well informed about the pros and cons as those of us who just spent five minutes reading about it online, and
- The vast majority of parents will make the decision they believe is best for their child
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And a 1a. That they will make such decisions in consultation with an informed and ethical medical professional, or even better, a team of such, so that the various risks and benefits can be assessed.
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Now that explains what they must be feeding our local police department.
Now, just stop right there!
/s
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