NIH advances landmark recommendations on disability inclusion and anti-ableism

A diverse and inclusive workforce benefits science and research. But unless it includes people living with a disability — the largest minority group in the U.S. and around the world — research will never be fully representative and science will not reach its full potential.

Although 27% of U.S. adults live with a disability, only 10% of science, engineering, and health doctorate holders, and less than 2% of researchers funded by the National Institutes of Health, report having a disability. Inclusion is even lower among professionals with disabilities from underrepresented racial or ethnic groups in science, technology, engineering, mathematics, and medicine fields.

The NIH, with its nearly $50 billion annual budget funding biomedical research, clinical interventions, training, and other activities, has recently prioritized increasing diversity, equity, and inclusion in its workforce and its extensive activities. People with disabilities have not historically been featured in these initiatives, which have largely focused on expanding representation and inclusion of people from racial and ethnic groups.

This may be about to change. In 2021, within its Working Group on Diversity, the NIH established a subgroup on individuals with disabilities, which we co-chaired, to explore ways to increase disability equity and inclusion. The committee that advises the NIH’s director endorsed the subgroup’s landmark set of recommendations, which were finally published on Dec. 30. To be sure, the subgroup fully understands there is a long way to go to promote disability inclusion, eliminate ableism (discrimination towards or devaluing the lives of disabled people), and removing barriers to succeeding in and benefiting from research for people with disabilities.

Inequities can occur at any step of the complex process of scientific research, including recruiting and training scientists, reviewing research grant applications, ensuring accessibility and inclusion within the research workplace, and promoting and supporting researchers and other personnel throughout their careers. Although ensuring access through reasonable accommodations has been law for 50 years (through Section 504 of the Rehabilitation Act of 1973), disabled people must typically overcome or circumvent barriers to their participation on their own.

Over the course of our careers, we have experienced or witnessed many acts of ableism and lack of accessibility. We have served on research grant review panels where members refused to believe that obtaining informed consent is possible from deaf people, despite effective communication options. We have encountered inaccessible online grant portals that lock out blind and visually impaired scientists. We have been dissuaded by program officers from submitting grants supporting disabled trainees, in contrast to the NIH’s stated focus on expanding diversity.

Systemic changes are needed, and recommendations now exist to direct these efforts.

Given its size and influence, the NIH has a remarkable opportunity to spark disability equity and inclusion within the scientific ecosystem. The nine recommendations from the subgroup’s report have the potential to tackle these disparities through the following actions:

• Updating NIH’s mission statement to eliminate ableist language about “reducing disability”
• Establishing an NIH Office of Disability Research to coordinate research activities involving people with disabilities and to support disability inclusion within the scientific workforce
• Ensuring that including people with disabilities and anti-ableism are core components of all NIH diversity, equity, inclusion, and accessibility efforts
• Developing an internal NIH-wide effort to identify and address structural ableism and promote disability inclusion, similar to approaches used to tackle other forms of discrimination and promote inclusion, such as UNITE
• Expanding efforts to include disability communities and the perspectives of individuals with disabilities in NIH efforts and help inform NIH’s approaches with these perspectives
• Formally designating people with disabilities as a health disparity population, allowing for more funding of research addressing the health inequities disabled people face
• Collecting data on disability wherever demographic information is collected within NIH data systems
• Establishing structures of accountability around these efforts to promote progress and transparency

Making these changes may not be easy. Structural ableism is baked into U.S. institutions, policies, and procedures, much as how other sources of bias have structural foundations. Nevertheless, these recommended changes align with broader federal efforts.

At a White House Summit on equity and excellence in science, technology, engineering, mathematics, and medicine (STEMM) in December 2022, the Biden administration announced a plan of action to advance equity across the ecosystem. These efforts are spurred by the Covid-19 pandemic, which exposed cracks in America’s scientific enterprise and made clear that an all-hands-on-deck approach is needed to secure the competitiveness of American research. This national plan includes ensuring that people historically excluded can be successful in and benefit from science and medicine, addressing the biases that block these groups from STEMM careers, and creating structures of accountability to track progress. These goals parallel closely the recommendations of NIH’s Subgroup on Individuals with Disabilities and endorsed by NIH’s advisory committee to the director.

The NIH’s leaders are now considering how to address these recommendations and improve disability equity and inclusion. We encourage other federal agencies and academic institutions to adopt and adapt these approaches and prioritize efforts to ensure that disabled people succeed in and benefit from research.

Bonnielin K. Swenor is director of the Johns Hopkins Disability Health Research Center and associate professor at the Johns Hopkins School of Nursing, the Wilmer Eye Institute at Johns Hopkins School of Medicine, and the Johns Hopkins Bloomberg School of Public Health. Lisa I. Iezzoni is a research physician at Massachusetts General Hospital, a professor of medicine at Harvard Medical School, and a fellow at the Harvard Radcliffe Institute. Steven Barnett is director of the Rochester Prevention Research Center: National Center for Deaf Health Research at the University of Rochester, and professor of family medicine and public health sciences. The authors write this essay as private citizens and scientists and not on behalf of the NIH. The opinions expressed here are their own, and not those of the NIH Subgroup on Individuals with Disabilities, which they co-chaired.

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