If you like your disability, you can keep your disability

Where does all the money go?

The National Institutes of Health (NIH) is the largest single public funder of medical research in the world. Given its annual budget of $48 billion, each and every U.S. taxpayer makes a significant contribution to its functioning. What does it do with all that money?

According to the NIH website, the organization invests in “innovative research” toward the goals of “diagnosing and preventing disease,” understanding “human growth and development,” and “exemplifying and promoting scientific integrity, public accountability, and social responsibility in the conduct of science.”

NIH’s mission is 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. [Emphasis added.]

No more fixing disabilities

This largely innocuous mission statement has remained unchallenged for years. However, in December, 2022, a group called the “Advisory Committee to the Director Working Group on Diversity, Subgroup on Individuals with Disabilities” issued a report recommending that the NIH mission statement be changed, explaining that, 

The current mission statement could be interpreted as perpetuating ableist beliefs that disabled people are flawed and need to be “fixed.” [Emphases added.]

What a difference time can make

Ten months passed, presumably long enough to discuss the report, before an article appeared in JAMA (the Journal of the American Medical Association) titled, “Revising NIH’s Mission Statement to Remove Ableist Language.”

The authors of the article (a physician from Harvard Medical School and a researcher from John Hopkins) implied that while once upon a time it was acceptable to talk about disability as an impediment, today disability is seen through a different lens: 

Attitudes about disability have changed dramatically over the last half century, largely driven by disabled people … NIH’s current mission statement has long historical roots, reflective of when it was developed. However, new thinking about disability should propel NIH going forward.

NIH might adopt changes

The paper's authors note that the NIH “is considering changing its mission statement.” A final decision has apparently not yet been made.

Pushback from the disabled

Not everyone was pleased to hear this. Dr. Paul M. Jost of St. Luke’s Hospital, Missouri, wrote to JAMA expressing his disappointment and describing his own experiences as someone who has learned to live and thrive despite his disability.

I always wanted to be a physician, but had a spinal cord stroke in 1972 at age 17 … I learned to walk again, although always with some difficulty. Despite that difficulty … I graduated from college and medical school, completed an internal medicine residency, and practiced for 6 years as an internist. I then completed an infectious diseases fellowship and went into practice … Fifteen years ago, my legs started to deteriorate further, and eventually I started using a power chair to get around at work.

Dr. Jost pointed out what was apparently missed: A person with a disability is not “flawed,” but he is disabled, nonetheless:

I find it disappointing that the National Institutes of Health (NIH) plans to eliminate language about reducing disability. Disabled people are no more or less “flawed” and needing to be “fixed” than people with sepsis, a femoral fracture, ulcerative colitis, or other health problems. [Emphasis added.]

Dr. Jost also sharply disassociated himself from today’s woke language and perceptions, writing:

The idea that my disability is imposed on me by society is ludicrous. My disability is the result of my stroke ... My disability is not part of my identity ... I do not take pride in it, nor am I ashamed of it. I would be delighted to have it fixed... [Emphasis added.]

The job of NIH

Dr. Jost concludes by reminding the NIH that their job is to research disease in order to cure it, not engage in “social responsibility” exercises:

I don’t want to see the next boy or girl who wants to be a physician and then has a spinal cord stroke have to deal with the struggles I have experienced because NIH was spending too much time playing word games and too little time doing research.

Some people are proud of being disabled (?)

Drs. Iezzoni and Swenor lost no time in defending their position in a response that also appeared in JAMA:

As we note in our article ... disabilities are diverse, and different disabled people have different perspectives. For example, while Dr Jost takes no pride in having a disability, other individuals are proud of their identity as disabled people.

They also cite a “disability historian,” who describes the “quest for a collective identity” based on “pride” as part of the “disability rights movement.”

... the task ... is to explore or to create a disability culture ... which views disability as caused by physical, attitudinal, and other barriers imposed by society...

WHO-compatible

As the icing on the cake, Drs. Iezzoni and Swenor stress that the new way of regarding disability is fully in line with the way the WHO sees things:

The proposed new language ... is compatible with the “biopsychosocial” model of disability, defined by the World Health Organization (WHO) as “an integration of [the] two opposing models” of disability—the medical model, favored by Jost, and social model ... Optimizing health therefore encompasses not only Jost’s desire to “fix” his “flawed” spinal cord, but also the diverse needs of other disabled people who feel devalued by NIH’s current mission statement.

In other words, the WHO, and possibly soon the NIH too, believe that it’s all in the eye of the beholder. If you like your disability, you can keep your disability. 

The only problem is, what happens if the WHO and NIH decide that you should like your disability, and therefore, there’s no need to fund research or produce medicine to treat it?