a A diverse and inclusive workforce benefits science and research. But unless people living with disabilities (the largest minority group in the United States and around the world) are included, research will never be fully representative, and science will reach its full potential. cannot perform.
27% of U.S. adults live with a disability, but only 10% of PhDs in science, engineering and health and less than 2% of researchers funded by the National Institutes of Health is reporting a failure. Inclusion is even lower among professionals with disabilities of underrepresented racial or ethnic groups in science, technology, engineering, mathematics, and medicine.
NIH provides an annual budget of nearly $50 billion for biomedical research, clinical interventions, training, and other activities, and recently committed to diversity, equity, and inclusion in its workforce and its broader activities. Prioritize improvement. Historically, people with disabilities have not been featured in these initiatives and have focused primarily on increasing the representation and inclusion of people of racial and ethnic groups.
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This may be about to change. In 2021, NIH established a subgroup on Individuals with Disabilities within its Working Group on Diversity, which we co-chaired, to explore ways to increase equity and inclusion for people with disabilities. A committee that advises the NIH Director approved a series of groundbreaking recommendations for the subgroup, which were finally released to the public on December 30. devaluing the lives of people with disabilities), removing barriers to successful and profitable research for people with disabilities.
Inequalities affect the complexities 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 staff throughout their careers. It can occur at any stage of the process. While ensuring access through reasonable accommodation has been a legal requirement for 50 years (Section 504 of the Rehabilitation Act of 1973), people with disabilities usually must overcome or circumvent barriers to participation on their own. it won’t work.
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Over the course of our careers, we have experienced or witnessed many disabilities and lack of accessibility. I joined a research grants review board whose members refused to believe it was possible to obtain a grant. did. In contrast to NIH’s stated focus on increasing diversity, we have discouraged program officials from submitting grants to support trainees with disabilities. .
Systematic change is needed and recommendations now exist to guide these efforts.
Given its size and influence, NIH has a great opportunity to promote equity and participation of people with disabilities in the scientific ecosystem. Nine recommendations from the subgroup’s report have the potential to address these disparities through next actions.
- Update NIH’s mission statement to remove competent words about ‘reducing disability’
- Establish the NIH Disability Research Office to coordinate research activities involving persons with disabilities and to support the inclusion of persons with disabilities in the scientific workforce.
- Ensure inclusion of persons with and against disabilities is a core component of all NIH diversity, equity, inclusion, and accessibility efforts
- NIH-wide efforts to identify and address systemic disability discrimination and promote disability inclusion, similar to approaches used to address other forms of discrimination and promote inclusion, such as UNITE to develop
- Expand efforts to include disability communities and disability perspectives in NIH efforts and help inform NIH’s approach using these perspectives
- Formally designate people with disabilities as a health disparity population, enabling funding for research that addresses the health inequalities faced by people with disabilities
- Collection of disability data where demographic information is collected within the NIH data system
- Establish accountability structures for these efforts to promote progress and transparency
Making these changes may not be easy. Structural disability discrimination is embedded in U.S. institutions, policies, and procedures in the same way that other sources of prejudice have a structural basis. Nonetheless, these recommended changes are consistent with broader federal efforts.
At the White House Summit on Equity and Excellence in Science, Technology, Engineering, Mathematics and Medicine (STEMM) in December 2022, the Biden Administration Announces Action Plan to Promote Equity Across the Ecosystem Did. These efforts, spurred by the Covid-19 pandemic, have exposed cracks in America’s science enterprise and made it clear that an all-inclusive approach is needed to ensure the competitiveness of American research. I was. This national plan includes enabling historically marginalized people to succeed in and benefit from science and medicine, and addressing the biases these groups hold against his STEMM career. , includes creating accountability structures for tracking progress. These goals align closely with the recommendations of his NIH Subgroup on Individuals with Disabilities and are endorsed by the NIH Advisory Board to the Board.
NIH leaders are now considering ways to address these recommendations and improve equity and inclusion for people with disabilities. We encourage other federal agencies and academic institutions to adopt and adapt these approaches and prioritize efforts to help people with disabilities succeed in and benefit from research. .
Bonnielin K. Swenor is Director of the Johns Hopkins Center for Disability Health Research and Associate Professor at the Johns Hopkins School of Nursing, the Johns Hopkins School of Medicine Wilmer Eye Institute, and the Johns Hopkins Bloomberg School of Public Health. Lisa I. Iezzoni is an Investigator at Massachusetts General Hospital, Harvard She is Professor of Medicine at Her School of Medicine, and Harvard She is also a Fellow at the Radcliffe Institute. Steven Barnett is Director of the Rochester Center for Prevention Research, National Center for Deaf Health Research at the University of Rochester, and Professor of Family Medicine and Public Health Sciences. The author is writing this essay as a citizen and scientist, not on behalf of the NIH. The views expressed here are their own and not those of his NIH subgroup on individuals with disabilities that they co-chaired.
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