In late 2023, the National Institute on Minority Health and Health Disparities (NIMHD), designated people with disabilities as a population with health disparities for research supported by the National Institutes of Health (NIH). This means that NIMHD now recognizes that people with disabilities as a group experience significant disparities in their rates of illness, morbidity, mortality and survival, driven by social disadvantage, compared to the health status of the general population (italics mine for emphasis). Other NIH-designated populations with health disparities include racial and ethnic minority groups, people with lower socioeconomic status, underserved rural communities and sexual and gender minority groups (NIMHD is one of the institutes comprising NIH),
NIMHD’s decision, which was arrived at after some controversary, reflects both the input of disability rights activists and scientific evidence. As NIMHD director, Dr. Eliseo J. Pérez-Stable stated, “People with disabilities often experience a wide and varying range of health conditions leading to poorer health and shorter lifespan. In addition, discrimination, inequality and exclusionary structural practices, programs and policies inhibit access to timely and comprehensive health care, which further results in poorer health outcomes. People with disabilities who also belong to one or more other populations with health disparities fare even worse.”
The designation is an acknowledgement that anti-disability bias is a force undermining the health of disabled people in the U.S. and so the health of the country.
Steeped in the medical model, NIH has always funded research into treatments for conditions resulting in disabilities. Now it will also fund research into the myriad barriers disabled people face in achieving equal access to health care and how these barriers can be eradicated. For example, simultaneously with the announcement of the designation, NIH issued a notice of funding opportunity calling for research applications focused on novel and innovative approaches and interventions that address the intersecting impact of disability, race and ethnicity, and socioeconomic status on healthcare access and health outcomes.
The social model of disability has come to the bastion of medical research.
“This is a big deal,” said Peter W. Thomas, co-coordinator of the Disability and Rehabilitation Research Coalition, which focuses on improving disability research.
Writing in Stat, Lynne Moronski, a health care researcher and parent of a daughter with significant disabilities, called the designation a landmark decision.
Joel Reynolds in a recent piece in JAMA Health Forum called it a watershed moment. He went on to say, “medicine is indeed at the beginning of appreciating the problem of ableism in medicine, the beginning of making equity of care for disabled patients a priority, and the beginning of not just acknowledging, but mitigating and eliminating the health disparities faced by disabled people. This beginning promises a future that improves quality and equity of care across patient populations, builds better health care systems, and makes a world that is a better fit for all.”
The action by the NIH and the updating of the 504 regulations to prohibit discrimination based on disability by health care providers receiving federal funds are victories for disability activists. Nonetheless, we still face threats. The medical system continues to be inefficient, fragmented and profit driven. The “better dead than disabled” ethos is virulent and, as discussed in a future blog, it underlies much of the agitation for legalized assisted suicide and euthanasia. It is the best of times. It is the worst of times.
3 thoughts on “A Watershed Moment: NIH Designates Disabled People as a Health Disparity Population”
Thank you SO much for reporting this to us! Having a mental illness adds another layer of disdain and contempt and frankly, hatred by healthcare providers towards us. Because we are often seen as “just looking for attention,” our legitimate medical needs as well as the more important needs for compassion, are neglected as a result. If you add to that many persons with mental illness, (like myself), just like people with physical disabilities often have no family or friends or anyone who is actually supportive to turn to. Many of us with mental illness are put into nursing homes and left to rot, as are our brothers and sisters with physical disabilities.
However, what IS encouraging is that the term “mental distress” rather than “mental illness” is starting to take hold. As such, we will not be seen as irrrevocably “broken,” but rather “mental distress” is starting to be seen as a normal part of the rainbow of human existence and experience, just like the varieties of physical disabilities and abilities. I agree the medical model is a “sham” designed to increase profits, which I think is at the Heart of the destructive nature of our medical system, here, today. As we all know, greed LEADS TO empoverishment as a PRIMARY cause. First affected are surrounding innocent people, not involved in creating the entity’s moral “machinery,” (of greed) itself.
Eventually, the Behemoth collapses in on itself, because greed is unsustainable as a way of life. Those entities who do STILL survive, but continue to put greed and self and profits ahead of people and their needs, and providing service, have to eventually resort to dishonest practices, and coverup, that further empoverish our communities. Two hospitals I know of: One a beloved Brooklyn institution, whose philosophy FIRST has been Service; and another, a “less-beloved” medical facility, whose basic philosophy has been, for decades “profits before people” and which provides much LESS true healing and has unfortunately hurt and gaslighted the peoole who come to them for help. Living in the area for forty years, I watched as patient care declined precipitously, esp. of older peoole, including several relatives. I watched, as this hospital then turned to dishonest and finally illegal means to maintain its profit base. Thank you.
I also agree that this is a very important moment in Disability Rights History in this country. Howevrr, it does not go far enough because at the root of our problem, not only as disabled people, but with Humanity in general, is the lack of Love and caring, which would naturally find a way to provide enough resources for EVERYONE to share. So that in the unfortunate and hopefully rare instance that someone does want to die, it won’t be for that reason.
It is important to preserve disabled people’s privacy as well as their health. So Lynne Moronski’s piece in Stat should have indicated that her daughter gave informed consent to have her disability publicized along with her name and her picture. https://vivo.brown.edu/display/fackerma
Thank you SO much for reporting this to us! Having a mental illness adds another layer of disdain and contempt and frankly, hatred by healthcare providers towards us. Because we are often seen as “just looking for attention,” our legitimate medical needs as well as the more important needs for compassion, are neglected as a result. If you add to that many persons with mental illness, (like myself), just like people with physical disabilities often have no family or friends or anyone who is actually supportive to turn to. Many of us with mental illness are put into nursing homes and left to rot, as are our brothers and sisters with physical disabilities.
However, what IS encouraging is that the term “mental distress” rather than “mental illness” is starting to take hold. As such, we will not be seen as irrrevocably “broken,” but rather “mental distress” is starting to be seen as a normal part of the rainbow of human existence and experience, just like the varieties of physical disabilities and abilities. I agree the medical model is a “sham” designed to increase profits, which I think is at the Heart of the destructive nature of our medical system, here, today. As we all know, greed LEADS TO empoverishment as a PRIMARY cause. First affected are surrounding innocent people, not involved in creating the entity’s moral “machinery,” (of greed) itself.
Eventually, the Behemoth collapses in on itself, because greed is unsustainable as a way of life. Those entities who do STILL survive, but continue to put greed and self and profits ahead of people and their needs, and providing service, have to eventually resort to dishonest practices, and coverup, that further empoverish our communities. Two hospitals I know of: One a beloved Brooklyn institution, whose philosophy FIRST has been Service; and another, a “less-beloved” medical facility, whose basic philosophy has been, for decades “profits before people” and which provides much LESS true healing and has unfortunately hurt and gaslighted the peoole who come to them for help. Living in the area for forty years, I watched as patient care declined precipitously, esp. of older peoole, including several relatives. I watched, as this hospital then turned to dishonest and finally illegal means to maintain its profit base. Thank you.
I also agree that this is a very important moment in Disability Rights History in this country. Howevrr, it does not go far enough because at the root of our problem, not only as disabled people, but with Humanity in general, is the lack of Love and caring, which would naturally find a way to provide enough resources for EVERYONE to share. So that in the unfortunate and hopefully rare instance that someone does want to die, it won’t be for that reason.
It is important to preserve disabled people’s privacy as well as their health. So Lynne Moronski’s piece in Stat should have indicated that her daughter gave informed consent to have her disability publicized along with her name and her picture. https://vivo.brown.edu/display/fackerma
This is good news and one more piece for fighting assisted suicide.