A New Mission Statement for NIH--Misguided Semantic Changes?

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 will affect research investments (which would be bad for human health).

Either way, it’s not useful.

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Take a step back. The current mission statement is this:

“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 disability.”

The NIH is requesting input on a proposed new mission statement (with changes in bold):

“To seek fundamental knowledge about the nature and behavior of living systems and to apply that knowledge to optimize health and prevent or reduce illness for all people.”

There are several proposed changes here, of course. Instead of “application of that knowledge,” the new mission says “apply that knowledge” (I assume this change makes no difference at all). [UPDATE: As a commenter points out, funding research on the application of knowledge isn’t the same thing as directly trying to “apply” knowledge, and the latter sounds more like CMS or FDA.]

Instead of merely “enhanc[ing] health,” the NIH now intends to “optimize health”—admirably ambitious, given how difficult it is even to enhance health.

The new mission also eliminates the goal to “lengthen life,” albeit for reasons that are left unexplained. Is gerontology research on the chopping block, or perhaps even the entire National Institute of Aging? Who knows.

But the most puzzling change is the elimination of the word “disability” from the old mission to “reduce illness and disability.”

The RFI attempts to explain this choice:

In 2021, NIH established the Advisory Committee to the Director (ACD) Working Group on Diversity, Subgroup on Individuals with Disabilities to dedicate time and resources to identify strategies to support individuals with disabilities. The Subgroup issued a report in December 2022 that contains several recommendations, including updating the NIH mission statement. The ACD adopted the Working Group’s recommendations and provided them to the NIH Director. The report stated:

“One immediate action for the NIH to support disability inclusion is to remove the language of ‘reducing disability’ from the NIH mission statement. The current mission statement could be interpreted as perpetuating ableist beliefs that disabled people are flawed and need to be ‘fixed’.”

To address this suggestion, NIH Leadership committed to evaluate the mission statement, particularly reviewing the inclusion of the phrase “reduce [...] disability”, and to update it to better reflect the current and future vision for the agency.

Hmmmmm.

As an initial matter, disabled people are not flawed in any moral, ethical, or legal sense. Of course not. They deserve to be treated as equals, and moreover to be given accommodations that enable them to participate in jobs and public life—everything from wheelchair ramps, to assistive devices, to closed captioning, to insurance coverage for artificial limbs, and more.

But the idea that disabilities themselves are not flaws and need not be fixed is quite odd, especially for an agency that currently spends $49 billion of taxpayer money per year to study and ultimately fix problems in human health.

For example, being blind is a disability precisely because it is worse than having the ability to see. If I can make a statement that is now apparently quite controversial, it is nice to be able to see!

If you can see, you can:

• Read any text, including old books or a notice you just got in the mail

• Interpret other people’s facial expressions

• Enjoy a sunset, or a painting, or the Alps

• Spot if someone is a danger to you or others

• Check out your surroundings, and avoid trips and falls

• Or even, enjoy online memes and videos that just aren’t the same without the visuals

If doctors and scientists can figure out ways to prevent or cure blindness, they should absolutely do so. To take a compelling example from developing countries: “An estimated 250,000–500,000 children who are vitamin A-deficient become blind every year, and half of them die within 12 months of losing their sight.”

It would be insane [to use an ableist term implying that being sane is better than being insane] to let these children suffer and die because we are afraid that supplying them with Vitamin A might hurt someone’s feelings by implying that blindness is a flaw to be fixed.

Of course it’s a flaw to be fixed, wherever possible. To say otherwise would imply that none of us would mind losing our eyesight.

Then there is deafness, which is actually the subject matter for an entire institute: the National Institute on Deafness and Other Communication Disorders (NIDCD). That institute’s mission statement is full of research topics that are obviously focused on fixing deafness—e.g., identifying genetic relationships, developing vaccines against ear infections that can cause hearing impairment, and more.

As well it should be! Deaf people are not “worse” as people (of course!), but deafness is worse than being able to hear. Hearing allows us to:

• Hear the sounds of nature

• Hear other people’s conversational responses, even if they are in another room and there is no sign language interpreter

• Take a walk while being able to hear whether a barking dog or a speeding car is approaching

• Hear a tornado siren

• Hear a baby’s first words

• Compare Glenn Gould’s recordings of Bach’s Goldberg Variations

If scientists and doctors can find ways to prevent or cure deafness, of course they should do so. It is odd that the NIH finds itself so trapped by the most extreme activists that it shies away from an indisputable proposition about what a health agency should do. If the NIH kept its current mission statement, a handful of extremists would complain, but the vast majority of Americans would approve.

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A side note: the distinction between disease and disability isn’t actually that clear in many cases. Someone with paralysis has trouble walking; so will someone with ALS or muscular dystrophy. Someone with congenital mental disabilities may have trouble remembering and processing information; so will someone with Alzheimer’s or other forms of dementia.

Yet I don’t see patient groups for ALS or Alzheimer’s descending on the NIH to demand that the NIH’s mission statement stop talking about “reducing illness” because it implies that illness is a flaw that needs to be fixed.

Oddly enough, these patient groups (and many others) are delighted that the NIH funds research that might help fix their condition, and in many cases, their main goal is to lobby for more such funding.

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Finally, check out this paragraph from the Advisory Committee report on disabilities:

“People with disabilities” versus “disabled people” . . . it is depressing that anyone thinks such a debate matters at all. I’ve seen first-hand in other areas (e.g., criminal justice reform) that well-meaning people can spend hours tying themselves in knots over semantic minutiae like, “we don’t want to say ‘convict’ or ‘former criminal’, but is it better to say ‘formerly incarcerated person’ or ‘justice-involved person’”?

None of these discussions make one bit of difference to anyone’s life, but at least a former prisoner can enjoy being called a “justice-involved person” when he is denied a job, a commercial driver’s license, or an apartment rental.*

Ironically, I hope the same thing is going on here—well-meaning people are wasting time writing long reports and making semantic changes in mission statements, but at least they will hopefully have no impact whatsoever on the actual course of medical research.

In short, the NIH should stop catering to extremists who are opposed to the very idea of improving health. Wherever NIH funds research on preventing or treating disabilities, it should continue to do so. If the proposed mission statement here is anything other than semantic, that would be a disaster for human health.

*Freddie DeBoer has a good riff on this triumph of semantics over substance:

Social justice politics are obsessive about the linguistic, symbolic, cultural, discursive, and academic to the detriment of the material. The reasons for this are pretty plain: the parts of contemporary society that the social justice world controls are media, academia, the arts, nonprofits — in other words, the domains of ideas, the immaterial. The man with only a hammer seeing a world full of nails, etc. But this means that basic aspects of material suffering ultimately receive scant attention. . . .

The triumph of the linguistic over the practical can be found all over this world. For example, consider the recent rigid policing of the term “person suffering from homelessness” over “homeless person.” The thinking is that the former stresses that homelessness happens to some people at some point while the latter defines them by that condition.

I’m sympathetic to this reasoning; it makes sense to me. I’m also sure that if you polled a thousand homeless people, you would not find a single one who would list this among their top ten problems. But when you’re a bookish arts kid, language is everything, and anyway, social justice politics does not have anything substantial to offer the homeless in material terms. So language policing it is.