Nothing About Us Without Us: How Disability Advocates Influenced Policy Change in Public Health Research

Nothing About Us Without Us: How Disability Advocates Influenced Policy Change in Public Health Research

Nothing about us without us.

The phrase has served as a longstanding embodiment of the disability community’s demands for inclusion, visibility, and access to basic human rights. It emphasizes the importance of having decision-makers who are reflective of people with disabilities and represents the need for decisions informed by meaningful input from the disability community. This rallying cry has united disability advocates, empowering them to collectively demand dignity and justice for disabled individuals.

These values were live in action when researchers, healthcare workers, community leaders, and other advocates all came together this fall and called on the NIH, the nation’s public health research agency, to designate people with disabilities as a health disparities population.

What is the NIMHD?

The National Institute of Health (NIH) is the federal agency that conducts medical research and provides funding for scientific studies aimed at improving public health. The National Institute on Minority Health and Health Disparities (NIMHD), one of the institutes within the NIH, promotes research aimed at reducing health disparities and improving the health of minority and underserved populations. NIMHD recognizes certain populations, such as racial and ethnic minorities and rural populations, as populations with health disparities. Researchers can apply and receive funding from the NIH if their research addresses health disparities in one of the designated populations.

Importance of the ‘Health Disparity Population’ Designation

Disability intersects with every facet of identity and can affect any individual, which is why it is critical to study in-depth. Without the health disparity population designation, researchers face hurdles in funding research that addresses health disparities impacting people with disabilities. The designation would open the door to federal funding from the NIH for research on people with disabilities, allowing greater insight into health challenges that disabled people experience.

In 2021, the National Council on Disability (NCD), which advises Congress and the President, wrote a formal letter to NIMHD asking that people with disabilities be designated as a health disparity population. The following year, The NIH formed a disability working group as part of the Advisory Committee to the Director, the committee that advises on matters related to the NIH’s mission. This working group was comprised mainly of researchers with disabilities, and the group recommended the health disparity population designation. Granting the designation, along with the rest of the working group’s recommendations, was unanimously endorsed by the NIH Advisory Committee to the Director. This working group put pressure on NIMHD to have their advisory council consider the designation. 

NIMHD Advisory Council Meeting

In response to the working group’s recommendations, NIMHD’s advisory council created a committee in the fall of 2022 to specifically examine the evidence on health disparities for people with disabilities and make a recommendation on the health disparities population designation. After a year of examining scientific literature and seeking input from experts with disabilities, the committee presented its summarized findings and recommendations during an NIMHD advisory council meeting on September 1st (The council meeting starts at 3:57:16).

To the disappointment of disability researchers and advocates, the committee ultimately recommended not granting the health disparity designation to people with disabilities, despite the endorsement from the larger NIH Advisory Committee to the Director. One reason for their recommendation was that “not all people with disabilities face health disparities.” Despite their reasoning, there is abundant research and evidence demonstrating that people with disabilities experience a range of health conditions that lead to poor health outcomes. Further, discrimination and exclusionary policies limit access to quality health care for people with disabilities which contribute to these disparate health outcomes. When asked how many people on the committee have designated openly that they are living with a disability, the presenters revealed that no one on the committee openly declared having a disability. The committee’s reasoning and conclusion did not include the lived experiences of disabled people and reflect harmful attitudes that people with disabilities are invisible and disposable.

Responding to the NIMHD

Dr. Bonnie Swenor, Director of the Johns Hopkins University Disability Health Research Center, and Dr. Jae Kennedy, health policy and administration professor at Washington State University—are both prominent leaders and disability researchers who have been relentlessly advocating for this designation. They had just co-authored an influential commentary outlining why the NIH should designate people with disabilities as a US health disparity population. Their research highlighted the immediate positive implications of the designation and how it would spur new federal investment in disability-based disparities research.

When decision makers are not reflective of the populations they are making decisions for or on behalf of, there are bound to be gaps in translating intent into implementation. Frustrated by the committee’s recommendation, Dr. Swenor and Dr. Kennedy contacted each other and knew something had to be done. The Director of NIMHD has the ultimate authority to grant a population as a ‘health disparity population’ and since the committee only presented a recommendation, they determined there was still a small window of time to correct course. They wrote a letter to the U.S. Department of Health and Human Services and to the Director of NIMHD—expressing their disappointment in the recommendation and asking that people with disabilities be given the health disparity population designation.

Mobilizing the Disability Community

Along with support from former congressman Tony Coelho, the primary sponsor of the Americans with Disabilities Act (ADA), Dr. Swenor and Dr. Kennedy reached out to the disability community to collect signatures in support of the letter via a Google form. In just 48 hours, they received over 1,500 signatures from healthcare workers, researchers, community members, and other advocates in the disability community. With over 30 pages of signatures, the letter was sent to the DHHS on September 6th, just six days after the NIMHD council meeting. With such a quick turnaround, the disability community was able to come together and mobilize for change.

On September 26th, the NIH announced that NIMHD director Dr. Eliseo Pérez-Stable designated people with disabilities as a population with health disparities for research supported by the NIH, showing that the efforts of the disability community paid off. Dr. Pérez-Stable, noted, “NIMHD recognizes the importance and need for research to better understand the complexities leading to disparate health outcomes and multilevel interventions.” Now with this designation, researchers have access to NIH funding for research projects that ultimately aim to improve the health of people with disabilities.

The Overall Impact

Overall, the designation opens up much-needed resources to support research that addresses the needs of marginalized groups that intersect with disability. In coming together in less than a week, the disability community asserted their strength and determination. This story represents the disability community’s collective power when organizing against ableist policies and views. While the battle against ableism remains ongoing, relying on allies and advocates within the community continues to be one of the most impactful avenues for change.

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