The NIH recently released a Request for Information on “Updating the NIH Mission Statement” that I find puzzling. It proposes to change the official NIH mission to as to stop trying to “reduce disabilities.” Either this is purely a matter of semantics and won’t affect research investments (in which case the NIH is wasting time and money on the exercise), or else it
I sympathise, but only to some extent. By riffing on semantics over substance you are missing something important - that there are different models, different semantics if you like, of disability. One of these is the social model of disability, which rightly needs to be given prominence alongside or even instead of the medical model.
As the other commenter has posted the ACX article “Contra the Social Model of Disability”, I urge you (and other readers) to explore the arguments therein.
Put less nicely, the social model of disability is plainly wrong. It is a nice-sounding falsehood.
I've read it of course. The idea that putting a blind person alone on an island is a toy example without value except as showing the difficulty of making the case for the priority of the medical model of disability.
Nobody ever makes the case for a purely medical model, as pointed out in the first paragraphs of the article. Nor am I now. But the idea that disability is caused solely by society is ridiculous. Disability is caused by fundamental limitations in human functioning. I have been disabled; it sucks. I much prefer walking to being forced to crawl to the refrigerator, and it is silly for me to expect accommodations in my own house, paid for by society, to enable me to live a normal life *if there is an alternative*. I come down strongly on the side of fix everything we can fix, accommodate the things we cannot. As pertains to this article, I’ve gone ahead and submitted a comment to the NIH stating this belief. We should be working to expand the range of capabilities and improve human bodies of all types, sickly or hale, not celebrating the inevitable issues that can occur to us.
Well, impairment is a human function matter, but the disability that arises from it is a social and cultural matter. Whether or not society ameliorates your impairment is another matter again. And how much we collectively tolerate difference is quite important. Tolerate doesn't have to mean celebrate. But celebration can be fun.
I would agree to some extent, but (for example) being a quadriplegic limits one's options in life quite considerably, in ways that society is powerless to change. We should fund research on how to prevent or treat spinal cord injuries, because it is impossible to "ameliorate" the condition other than in very modest ways..
There should of course continue to be research on treating spinal cord injuries. And any change of wording in the NIH mission is unlikely to stop this.
People are currently highly sensitive to language, and of course some absurdities get thrown up. But questioning definitions of disability is not absurd. What a change of wording may do is complicate the distinction between ability and disability, and allow greater diversity in setting research priorities. Paradoxically, it might improve the focus and outcomes of research on spinal cord injuries.
Words matter, and this is not a new idea. It was a now dead wealthy white male philosopher who said 'the limits of my language define the limits of my world'. If this is true then meditating on language and choice of words is a way of meditating on the world of others. Which is valuable in any context.
I’m not against tolerance by any means. I am against semantic word games that cheapen the value of language, and I feel that renaming disability “impairment” and announcing that disability is what happens when society doesn’t accommodate is nothing more than semantics. First, because society does not have an obligation to disproportionately spend resources accommodating those who are unwilling or unable to change (note, my initial point was and remains fixated on there being an alternative, a healing surgery or treatment etc). Second, because these word games are *nice* but IMO fundamentally dishonest.
Again, I urge you to re-read ACX’s Contra the Social Model of Disability. It very handily addresses the arguments you are making, and it seems to me a little dishonest to cherry-pick a single example from the article in a vacuum and then ignore the rest. That’s a straw man.
I am not open to changing my mind on the social model, unless you have better arguments than the article itself. Tolerance is beautiful, but framing disability as tolerance is akin to dressing someone in pain in beautiful clothes. We need to improve the lives of the disabled *by fixing them*, not by coddling them emotionally.
I recognize that the sentiment is purely “ableist”, and reject this as being a bad thing. If we can improve not only people’s lives, but the people themselves, it strikes me as morally wrong not to.
So what about the people whose conditions society lacks the capability to improve? Are we not to spend resources accommodating them? There are limits to the people who the medical profession can currently cure. Dont we have a responsibility to mitigate social conditions excluding their full participation and full ability to benefit from medical science with innovations like accessible medical diagnostic equipment and screen reading technology?
Thanks for taking the time to discuss this. It is curious to me that, as pointed out in your extended quote by DeBoer, some factions place exquisite emphasis on nuanced meaning of words, but then overlook it elsewhere, or make up their own meanings which they insist others follow. An example of the later occurs above as Mañana tries to draw a distinction between impairment and disability. But the words simply don't mean this, even if one wants them to. If one lacks the ability to see, they have a disability . This is all it means and has nothing to do with society or culture.
An example of the former (inconsistent emphasis on precision) occurs in the new mission statement itself. In the original statement the phrase "To seek fundamental knowledge" applies to nature, behavior and applications. The mission remains a a knowledge-generating mission in all of these areas, which is consistent with our understanding of what NIH does. In the new construction, we are seeking knowledge about nature and behavior, but now we are applying , rather than seeking knowledge about applications. This fundamental changes the mission. HRSA, AHRQ, CMS and others are implementation agencies. NIH is not. I am pretty sure that they did not intend to change the mission of the NIH, yet this sort of carelessness can have implications later on.
Yes, Greg, I do see your point about the possible meaning "and the application of [...] in the current mission statement. It could suggest that the NIH has one of its missions as seeking knowledge about how society applies the institutes knowledge. To that extent, I think the institute has justification to review that goal and render it as in the proposed "to apply [...], depending on what it considers to be its principal mission(s).
On the other hand, I think that we cannot discount the social implications of the social model of disability for how people who suffer from disability perceive themselves, arising from their understanding of society's symbolic meaning of words that describe their disability or impairment. Recasting the mission as proposed doesn't necessarily deduct from the import of the medical model, IMO.
Related from ACX https://open.substack.com/pub/astralcodexten/p/contra-the-social-model-of-disability
I sympathise, but only to some extent. By riffing on semantics over substance you are missing something important - that there are different models, different semantics if you like, of disability. One of these is the social model of disability, which rightly needs to be given prominence alongside or even instead of the medical model.
As the other commenter has posted the ACX article “Contra the Social Model of Disability”, I urge you (and other readers) to explore the arguments therein.
Put less nicely, the social model of disability is plainly wrong. It is a nice-sounding falsehood.
I've read it of course. The idea that putting a blind person alone on an island is a toy example without value except as showing the difficulty of making the case for the priority of the medical model of disability.
Nobody ever makes the case for a purely medical model, as pointed out in the first paragraphs of the article. Nor am I now. But the idea that disability is caused solely by society is ridiculous. Disability is caused by fundamental limitations in human functioning. I have been disabled; it sucks. I much prefer walking to being forced to crawl to the refrigerator, and it is silly for me to expect accommodations in my own house, paid for by society, to enable me to live a normal life *if there is an alternative*. I come down strongly on the side of fix everything we can fix, accommodate the things we cannot. As pertains to this article, I’ve gone ahead and submitted a comment to the NIH stating this belief. We should be working to expand the range of capabilities and improve human bodies of all types, sickly or hale, not celebrating the inevitable issues that can occur to us.
Well, impairment is a human function matter, but the disability that arises from it is a social and cultural matter. Whether or not society ameliorates your impairment is another matter again. And how much we collectively tolerate difference is quite important. Tolerate doesn't have to mean celebrate. But celebration can be fun.
I would agree to some extent, but (for example) being a quadriplegic limits one's options in life quite considerably, in ways that society is powerless to change. We should fund research on how to prevent or treat spinal cord injuries, because it is impossible to "ameliorate" the condition other than in very modest ways..
There should of course continue to be research on treating spinal cord injuries. And any change of wording in the NIH mission is unlikely to stop this.
People are currently highly sensitive to language, and of course some absurdities get thrown up. But questioning definitions of disability is not absurd. What a change of wording may do is complicate the distinction between ability and disability, and allow greater diversity in setting research priorities. Paradoxically, it might improve the focus and outcomes of research on spinal cord injuries.
Words matter, and this is not a new idea. It was a now dead wealthy white male philosopher who said 'the limits of my language define the limits of my world'. If this is true then meditating on language and choice of words is a way of meditating on the world of others. Which is valuable in any context.
I’m not against tolerance by any means. I am against semantic word games that cheapen the value of language, and I feel that renaming disability “impairment” and announcing that disability is what happens when society doesn’t accommodate is nothing more than semantics. First, because society does not have an obligation to disproportionately spend resources accommodating those who are unwilling or unable to change (note, my initial point was and remains fixated on there being an alternative, a healing surgery or treatment etc). Second, because these word games are *nice* but IMO fundamentally dishonest.
Again, I urge you to re-read ACX’s Contra the Social Model of Disability. It very handily addresses the arguments you are making, and it seems to me a little dishonest to cherry-pick a single example from the article in a vacuum and then ignore the rest. That’s a straw man.
I am not open to changing my mind on the social model, unless you have better arguments than the article itself. Tolerance is beautiful, but framing disability as tolerance is akin to dressing someone in pain in beautiful clothes. We need to improve the lives of the disabled *by fixing them*, not by coddling them emotionally.
I recognize that the sentiment is purely “ableist”, and reject this as being a bad thing. If we can improve not only people’s lives, but the people themselves, it strikes me as morally wrong not to.
So what about the people whose conditions society lacks the capability to improve? Are we not to spend resources accommodating them? There are limits to the people who the medical profession can currently cure. Dont we have a responsibility to mitigate social conditions excluding their full participation and full ability to benefit from medical science with innovations like accessible medical diagnostic equipment and screen reading technology?
Thanks for taking the time to discuss this. It is curious to me that, as pointed out in your extended quote by DeBoer, some factions place exquisite emphasis on nuanced meaning of words, but then overlook it elsewhere, or make up their own meanings which they insist others follow. An example of the later occurs above as Mañana tries to draw a distinction between impairment and disability. But the words simply don't mean this, even if one wants them to. If one lacks the ability to see, they have a disability . This is all it means and has nothing to do with society or culture.
An example of the former (inconsistent emphasis on precision) occurs in the new mission statement itself. In the original statement the phrase "To seek fundamental knowledge" applies to nature, behavior and applications. The mission remains a a knowledge-generating mission in all of these areas, which is consistent with our understanding of what NIH does. In the new construction, we are seeking knowledge about nature and behavior, but now we are applying , rather than seeking knowledge about applications. This fundamental changes the mission. HRSA, AHRQ, CMS and others are implementation agencies. NIH is not. I am pretty sure that they did not intend to change the mission of the NIH, yet this sort of carelessness can have implications later on.
Yes, Greg, I do see your point about the possible meaning "and the application of [...] in the current mission statement. It could suggest that the NIH has one of its missions as seeking knowledge about how society applies the institutes knowledge. To that extent, I think the institute has justification to review that goal and render it as in the proposed "to apply [...], depending on what it considers to be its principal mission(s).
On the other hand, I think that we cannot discount the social implications of the social model of disability for how people who suffer from disability perceive themselves, arising from their understanding of society's symbolic meaning of words that describe their disability or impairment. Recasting the mission as proposed doesn't necessarily deduct from the import of the medical model, IMO.