Tackling ableist mentality at the NIH

In My Humble Opinion
1

Stating a goal of reducing disability is ableist.

That’s according to a viewpoint published in the latest issue of the Journal of the American Medical Association.*

An advisory committee has urged the NIH to revise its mission statement, which currently reads:

“To seek fundamental knowledge about the nature and behavior of living systems and the application of that knowledge to enhance health, lengthen life, and reduce illness and dsability.”

The last part of that statement would be revised to “optimize health and prevent or reduce illness for all people” (removing the reference to disability).

The advisory committee says “The current mission statement could be interpreted as perpetuating ableist beliefs that disabled people are flawed and need to be ‘fixed’”.

Note that this is not about disliking the term “disability”. The viewpoint authors criticize terms like “differently abled” and “physically challenged”, noting that such words are viewed by disabled people as “patronizing or infantilizing”.

The proposed change hasn’t gone unchallenged.

A patient’s opinion published earlier in JAMA:

"Most of us either have a disability ourselves or know someone who does. I don’t know of anyone who wouldn’t want to be healed. Being healed is not the same thing as being ”fixed.”

“The NIH statement doesn’t read or come across that disabled people need to be fixed or that they are flawed because of their disability. The statement reads that the NIH is making it a priority to discover ways to prevent disability or heal it. People, disabled or not, are counting on groups like the NIH to find cures, treatments, and solutions to make their lives better. Let’s not slow them down.”

While it’s possible that tinkering with a mission statement may not have much practical effect, I’d hate to think that efforts at the NIH to limit or prevent disability from disorders like MS and long Covid would be hampered by the belief that disability is a positive or at least neutral condition.

The NIH Advisory Committee Report states some laudable goals. “Fixing” the mission statement isn’t one of them.

*the separately published viewpoint in JAMA apparently requires a subscription to access.
**the Dope software thinks this topic is similar to “NFL rules question (regarding tackle-eligible plays)”. Sounds like an ableist interpretation. :face_with_spiral_eyes:

2

Sounds like the old “deaf is not disabled” argument.

3

Also sounds like way too many people have too much time on their hands. At this point we can only hope for a richly deserved collapse. Soon.

4

It’s a debatable point, but I don’t see anything wrong with suggesting it. The thing is, even if they’re wrong, they’re clearly thinking of disabled people and trying to do good for them. It’s the sort of thing that should be debated with those who actually are disabled, and come to a conclusion.

It’s not something that needs mockery from the outside. It’s trivially easy to make any proposed change seem mockworthy if you present it in a certain way. And mocking those who propose bad changes only makes it easier to mock those who propose good ones.

This sort of thing is outrage bait, designed to say “look at all these woke PC people. See how stupid it is?” There’s nothing to actually be outraged about when someone proposes a change in language to try and be more sensitive.

What I’d like to see is the actual deliberations by the committee in question. I want to know if they consulted with real disabled people. But, even if they didn’t, I refuse to mock them.

5

But who speaks for the “disabled”? They are not a coherent community of interest and they certainly do not have an elected leadership empowered to set the “official” opinion for all of them.

However many “consultations” with however wide a collection of stakeholders of whatever quality of actual qualification, NIH will have to say something, even if it’s nothing. The stakeholders will not be unanimous. There will be advocates for “Let’s hasten the day we prevent / cure the scourge of (e.g.) deafness”, and (e.g.) “Deafness is a unique and valuable state of humanity and must be preserved at a all costs, and perhaps even encouraged to become more prevalent.”

What do we do with that?

6

Gentlemen, gentlemen! Transhumanism can satisfy both sides. We can give people implants that let the deaf hear and let the hearing hear a thousand times better; but anyone who chooses to experience the world with dwaf ears can do so by turning off the implants using the bluetooth enabled app.

7

I first heard that from people within the Deaf community, and while I’ve come to understand and appreciate why many of them have that attitude, I can’t help but disagree with their assessment. I go with the definition of disability as used by the American with Disabilities Act: A physical or mental impairment that substantially limits one or more major life activities. Over the years I’ve seen that belief cross over into other groups, mainly among the neurodivergent. But neurodivergent doesn’t mean they have a disability, it just means their brain works differently. But then it might work differently because of ADHD, Dyslexia, Bipolar Disorder, or even Down Syndrom all of which most of us would recognize as a problem that could severely inhibit one’s to participate in one or more major life activities.

I have a hard time seeing why it would be undesirable to cure all manner of disorders including Autism. Maybe that’s ableist of me, but that’s fine. If I got hit by a bus tomorrow and lost the ability to lose my legs you can bet I’d long for a cure for my paraplegia. If I had a kid with Autism, who would exhibit self-harm like banging his head against the wall when stressed out, I would really appreciate a cure. I’d want it fixed so he would be hampered in life by a disorder.

8

I think there are a few different factors in play here. Deaf people, people without the use of their legs, or people with autism - these are totally different situations.

I have a sibling with autism, and when I was a kid everyone always talked about a “cure”. As a dumb little kid, I thought that this would mean thay someday they might invent a pill that you could give to someone like my brother and suddenly their mind would start working differently.

When I was in middle school, we read Flowers for Algernon - more accurately we read an abridged version of the book, and it intrigued me enough to check out the full thing from the library.

For the first time I started thinking about what a “cure” would really mean - what it could possibly mean. I could maybe imagine “curing” a two year old who’d just been diagnosed with autism so that as they continue to develop they’d go down a more typical trajectory. But what would it even look like for such a change to occur in an adult? Even if you made their brain work “typically” going forward, you can’t change their prior experience; and isn’t that a major part of what makes us “us”?

Eventually, you have to come to the conclusion that “curing” autism is impossible; and further, that if you could magically “cure” someone of being neurodivergent, you’d essentially be destroying the person they were and creating a new person in their place.

At the same time, you’re right about some of these things having a severe impact on quality of life, and I don’t think it is “ableist” to recognize this. What my brother has is apparently not known to be genetic, so there wasn’t much I could do when having kids, but before I knew that genetic screening + IVF was something I looked into because I want to provide my kids with the best lives I can.

With less severe cases, though, or with cases that aren’t a mental handicap - something like dwarfism, for example - the implication you want to avoid is the idea that some people shouldn’t have been born.

Deaf people are in another category, I think. My understanding is that the “deaf is not disabled” thing comes down to community, mainly. Deaf people created a community for themselves and the people close to them, with their own language and their own practices. If deafness could be cured across the population through a new procedure tomorrow, you might think of that as an unmitigated good - people previously lacked the ability to hear, but now they have it! However, to someone who is part of the deaf community and who values it greatly, this would mean the destruction of that community. Hence, the idea that deafness is not a disability and should not be eliminated.

I’m sympathetic to this argument, but I am a firm believer in choice. I talked about implants in a tongue in cheek way earlier in the thread, but more seriously I do believe that if anyone who is deaf wishes to gain the ability to hear, they should be given that opportunity; but no one should be forced into it.

If people choose to stay deaf and live in that community, we should respect that choice. But we should offer all of those people the choice; and if it turns out that staying deaf is not an attractive enough option and that within a generation everyone abandons the deaf community of their own free will, that’s up to them.

Finally, in the third case of someone who lost the use of a limb through trauma - I don’t see anything good about that. I think we should be respectful of people with such injuries, we should set up our public spaces to accommodate them, and we shouldn’t assume that such people are helpless; but I don’t see any reason not to do everything in our power to restore as much functionality as possible to people in that situation.

Finally, I don’t think there is anything inherently good or right about our “natural” state. Aside from practical concerns about side effects or questions of access, I see nothing wrong with going beyond restoring functionality. For example, if we can someday use a camera to replace a blind man’s eye, and we need to decide whether to limit this camera to the level of functionality that the basic Mk 1 Eyeball has or whether to blow right past that - then (again barring practical concerns) I say go wild.

9

I didn’t actually see mocking. Yes, there were phrases suggesting that the writer is exasperated with the other point of view. But mocking, in the OP or the linked article? Where did you see that?

To be fair, I bet there IS mocking out there, in other places, so you’re almost certainly not wrong to call it out.

As to “did they consult with real disabled people” - why do you think there is no one at NIH who is disabled?

10

I don’t know how useful it is to separate mental and physical disabilities within the context of this discussion. Ideally, we don’t want anyone to have mental or physical disabilities, right? Are we even all on the same page here? Do we all agree it would be preferrable if no child was born deaf, or with ADHD, Bipolar Disorder, a club foot, or even a cleft palate?

You’re right though, we don’t want anybody to feel as though they shouldn’t have been born.

There was a documentary on PBS many years ago that helped me understand the position of many people in the Deaf community. I remember a grandfather who was quite upset his grandson’s parents opted for cochlear implants. It dawned on me that it wasn’t hearing or not hearing that bothered grandpa, he was afraid his grandson wouldn’t be part of the Deaf community, and this might affect their relationship in a negative manner.

If I’m a parent, there’s a good chance I’d have to make that desicion for my kid. From what I know about cochlear implants, I wouldn’t automatically get them. But if fixing the hearing loss was a relatively simple surgery, there’s no question, I’d get it done. There might very well come a day when the Deaf community ceases to exist because medical technology is able to restore normal function to the most common causes of deafness. While I think it’d be great if we could restore hearing, I recognize it would also be sad to lose that culture.

11

Sure.

Where it gets tricky is when parents decide their profoundly hearing-impaired or deaf children shouldn’t receive cochlear implants.

In that example, the parents refusing treatment for their children both have normal hearing, but have ties to the deaf community. Deaf parents in the past have often made similar decisions, but that seems to be changing.

Of relevance to the mission statement controversy: should the NIH not fund research into preventing and treating deafness because that would be ableist?

12

I was sharing my understanding of what the deaf community says, not my personal opinion.

I was only half kidding about the transhumanism thing. If I was running a country’s health service I’d look into providing anyone wanting to have children with IVF and genetic screening services. We could reduce human suffering by an incredible amount in a single generation. I think it would make such a massive difference that it is almost immoral that we don’t currently do it.

13

I disagree. I think this reads like a right-wing attempt to trap people into giving up a much-needed government service.

They think that the “woke” will jump on the bandwagon and yell “disability is good!” at the top of our voices. Meanwhile, they are like Snidely Whiplash twirling their moustaches 'til the moment they can start denying research programs that are “outside of the NIH’s mission.”

In attempting to shrink the VA budget, they have argued in the past that a man in a wheelchair can be considered perfectly healthy if he has no other ongoing concerns. A person can be “healthy” with an amputated limb.

So if the NIH mission includes “health” but not “disability” then the GOP can start bleating that anything not definable as a “disease” need no longer be funded. Then they take all the “woke”* arguments about disability and start repeating them out of context.

Boom, no more research regarding artificial limbs, re-growing nerves, ear implants, or any other elective treatment.

I know a Harkonnen trick by the stench of it.

*I presume that everyone here knows that’s not really what “woke” means. I am predicting the behavior of people who have attempted to re-define it for despicable political purposes.

14

I think the NIH’s mentality about people with disabilties is somewhat important. When I coach adults with Down’s, autism or some other cognitive disability, maybe my thinking of them as individuals with personalities, relationships, interests and goals could be labeled as ‘ableism.’ To me thought it’s mostly a continual reckoning of how to base my conversations with them to get them to work independently at their jobs.

15

This is always hard for me to wrap my had around, because it is about having different paradigms. From within one paradigm, the other just doesn’t make sense, but I think they both have advantages, and might be appropriate at different times.

Deafness is a really good example. Deaf people living in a Deaf (or Deaf-friendly) community don’t experience their deafness as a disability. They can communicate, build relationships, get an education, have interesting and satisfying jobs, meet people, buy things at the shop, get expert advice etc. etc. Deaf people in the regular ‘hearing’ community can struggle hugely with all of those things. The person is the same either way, but the way society works for them is completely different, So is the deafness the problem, or is the society the problem?

Okay, so not everyone is going to learn sign language to accommodate Deaf people, but there often ways that society can change or adapt to make life easier for people with disabilities. But you have to be thinking about that. You have to have a model of disability that acknowledges the role that society plays in creating the negative experiences, and a willingness to maybe change the way we as a society do things. ‘Medical’ models of disability put all the thought and problem-solving onto the person with the disability. Just change them, then we don’t have to change.

If a kid is banging their head against the wall because they can’t cope with the sensory overload in their environment, you can wish for a cure to fix the kid, or you can change their environment towards something more manageable for them. That means accepting them as they are, not as someone who needs curing. With autism, people are spending a huge amount of time, money and effort trying to change an autistic person into someone who functions ‘normally’ in society, often with limited success, and at great personal cost to the autistic person, instead of allowing people to be themselves and making accommodations. Everyone has to conform to the socially imposed standards of ability as much as possible.

I think for some things, it’s okay (mostly because it’s easy) to ‘fix’ people, but when it isn’t, then you have to think about how much this focus on disability as being that person’s individual issue is making some things worse, and preventing people from getting more appropriate, or more effective, support.

16

So for instance I know a man who’s a supervisor in a restaurant and was born deaf. He communicates mostly verbally, with gestures both ASL and not. He’s naturally so much an interlocutor too when talking with people. This is totally anecdotal of course. He and his employees would probably have no interest in government paradigms. They’ve mostly created their personnel and organization mostly from a business perspective.
The adults with disabilities I support actually benefit from an ableist paradigm presented by NIH. The paradigm mostly serves as guidance to job coaches so I think it’s beneficial. Yet I understand the expense of presenting ableism to a whole culture - I understand it a little bit anyway.

17

I don’t understand why you view this as an either/or situation. I might wish for a breakthrough in medical techology to repair the damaged nerves that makes my (hypothetical) child paraplegic, but that wouldn’t stop me from dealing with the reality of the situation and try to make the necessary adaptations for him to participate in society and retain some independence. Humans are amazing creatures capable of doing multiple things.

18

I get why someone could see the division. Most all of the employers of adults with disabilities I work with think of paradigms as such crap regardless.

19

I think you can definitely do both, but one way is much more common than the other. It becomes the default, and it takes a bit of effort to try to imagine doing things a different way.