To the shock of many, the National Institutes of Health (NIH) has proposed eliminating the goal of reducing disability from its mission. This came about based on a recommendation of a DEI Workgroup on disability concerned that this goal was “ableist.”
In response to the NIH request for public comment on the proposal, NCSA has submitted the following via email and in shortened form on the submission website. We encourage other organizations and individuals to submit comments as well. The deadline is November 24, 2023.
National Council on Severe Autism
PO Box 26853
San Jose, CA 95159
Office of the Director
National Institutes of Health
Via NIH submission website submission website
Re: Opposition to Proposal to Eliminate "Reducing Disability" from NIH Mission Statement, Notice Number: NOT-OD-23-163
To the Office of the Director:
We have read the National Institute of Health’s (NIH) proposal to erase the goal of “reducing disability” from its mission.
The ostensible purpose of this proposal is promotion of diversity, equity and inclusion (DEI) goals, specifically to “support disability inclusion” at the NIH. The internal report on which this idea is based, Advisory Committee to the Director Working Group on Diversity Subgroup on Individuals with Disabilities Report, December 1, 2022, asserts that the current mission statement “could be interpreted as perpetuating ableist beliefs that disabled people are flawed and need to be ‘fixed.’”
This argument rests on a clear logical fallacy: it conflates “disability” with “individuals who have disabilities.” Disability itself is not a neutral state of identity; by its very nature it means impairment, dysfunction, and incapacity. This fact is mutually exclusive from the other fact at hand: individuals with disabilities have value and should not be stigmatized.
It should go without saying that the goal of reducing disability, i.e., impairment, on both a population and individual level is a moral and pragmatic imperative that does not carry any animus toward individual people whose functioning is limited by their disabilities. Our collective desire to eradicate polio hardly demeans those individuals who have fallen victim to polio-caused paralysis. Our aim to reduce fetal alcohol spectrum disorder, and all the disability it can entail, does not mean we believe those affected are morally flawed, or flawed in the sense of any abstract philosophies. Wanting to reduce these and countless other impairments that reduce functioning and human potential — multiple sclerosis, ALS, schizophrenia, the list is long — hardly equates to “ableism.”
When an obstetrician unwraps an umbilical cord choking a neonate, and therefore reducing the risk of lifelong impairment, is she engaging in ableism, or rather the most honorable sort of humanity? By any reasonable standard, disability should be prevented whenever possible. Laws mandating helmets and seat belts are not “ableist”; they protect the public from preventable injury and consequent disability and all the costs, burdens, pains and dependencies that result. When a pregnant woman takes folic acid supplements to reduce risk of spina bifida in her child, she is not “ableist,” she is obviously taking prudent preventive measures to reduce the risk of serious impairment in her child. Countless public health campaigns and NIH efforts shine a light on the risks of smoking, to reduce the prevalence of disabling conditions such as emphysema and COPD. Was it ableist for the FDA to have banned thalidomide?
The NIH-Wide Strategic Plan makes it clear that a paramount goal of NIH efforts is “to support innovative research ultimately aimed at protecting and improving human health.” The word health of course encompasses reduced risks and impacts of disability.
While disability is often difficult to “fix,” to borrow language of the report, the vast majority of people with disabilities would have preferred their disabilities be prevented, and if not prevented, then at least alleviated. Perhaps there are people who do not wish to have their disabilities reduced. For example, some deaf people may not wish to hear; some who are blind may not wish to see; some with paraplegia may not wish to walk. But this would be the 1%, not the 99%.
Some might argue that the mission statement’s remaining phrase “prevent or reduce illness” would encompass disabling conditions but of course that is not true. For example, autism is not an illness, it is a developmental disorder rooted in abnormal early brain development that causes significant functional disability in the vast majority of cases. Due to unknown causes, this serious mental disorder now affects about 3% of U.S. children, portending catastrophic long-term consequences for our polity.
While the need to reduce autism rates has never been more urgent, the new mission statement would not-so-subtly remove any mission to reduce autism, either on an individual or population level. Who would pay the price for this erasure of mission? Americans who count on the NIH to spearhead efforts to identify causes, and also treatments to reduce its disabling impacts, which can include failure to achieve basic communication or living skills, aggression, self-injury, elopement, ingestion of inedible objects, property destruction, and of course lifelong dependency.
With this proposal the NIH threatens to jump into a foreign moral universe detached from its core duties and in conflict with its congressional mandates and the urgent needs and desires of American citizens and taxpayers. We oppose it in the strongest terms possible.
Thank you for your consideration of our comments.
Very truly yours,
Jill Escher
President
1. While the word ‘ableism’ does not have a concrete meaning in general parlance, the report defines “ableism” as “the belief that people with disabilities are flawed and less valuable than nondisabled people.”
2. Under the Americans with Disabilities Act, for example, a person with a disability is defined as a person who has a physical or mental impairment that substantially limits one or more major life activity.