Despite being the largest minority in the country, people with disabilities like us have been structurally and institutionally prevented from entering research-intensive fields, and when we do manage to break through, we are rarely given the support and accommodations we need to stay employed and succeed in our professional lives.
As we have experienced, including people with disabilities in academic leadership and decision-making positions can lead to innovation, creative problem-solving, and insight across the disciplines of science, policy, education, and management.
Unfortunately, there is little formal data to back up what we have witnessed. Research supports the idea that diversity in gender, ethnicity, and sexual orientation benefits institutions, including attracting top talent and increasing profitability. In science, it translates to more publications and citations, better preparation, and timeliness of methodological approaches. Without proper research and analysis, decision-makers may ignore the benefits of including researchers with disabilities and ignore efforts to increase their presence in science.
However, the percentage of principal investigators with disabilities has declined in academia, falling from 2% to 1.3% between 2008 and 2022, despite increases in workforce participation rates for people with disabilities. NIH must leverage its authority over the scientific ecosystem and a groundbreaking set of newly released recommendations on disability inclusion to reverse this trend.
Other statistics paint a similar picture: The unemployment rate for scientists and engineers with disabilities in 2019 (5.27%) was higher than the national unemployment rate (3.7%). Employed scientists with disabilities have fewer training and funding opportunities, such as grants, assistantships, fellowships, and scholarships, than their non-disabled counterparts. And while NIH has worked to include underrepresented groups in the scientific workforce, people with disabilities have been largely overlooked in its mission.
Meanwhile, in the past two years, 81 anti-diversity, equity, and inclusion bills have been introduced in 28 states across the U.S., further impeding efforts to build disability equity. These new bills include, but are not limited to, defunding DEI offices, removing diversity statements, and prohibiting institutions from considering people’s diverse backgrounds and identities when making hiring and promotion decisions.
Thirteen of those states are in the South, where the disability rate is already the highest in the nation at 13.8%, according to census records, and where the region also lags far behind in higher-paying programs such as Medicaid expansion.
We are Southern disability researchers who also belong to other intersectional marginalized labels, such as queer and Black. As such, we experience a unique set of physical and systemic challenges, including access to lab facilities and equipment; lack of access to in-person research sections, conferences, symposia, and relationship-building social events that often lead to job opportunities; implicit bias; crumbling diversity and inclusion policies; and limited support services. Navigating these barriers places a heavy burden on disabled people entering the field. Without systems that foster equity, such as strong DEI, the participation of disability researchers will continue to decline, especially in the South.
On December 30, 2022, the Subgroup on Disability within the NIH Working Group on Diversity released a set of groundbreaking recommendations on how to increase equity and inclusion for people with disabilities in scientific research.
The Working Group recommended that NIH address structural ableism (i.e., the belief that people with disabilities are defective and less valuable than able-bodied people) and promote disability inclusion through internal efforts, increased engagement with the disability community, and formally designating people with disabilities as a health disparities population for increased research funding. They also recommended updating the NIH mission statement to remove ableist language. For example, some scholars argue that phrases such as “reducing disability,” commonly used in NIH literature, directly or indirectly perpetuate ableism by calling for the erasure of people whose disabilities cannot be cured or by suggesting that disabilities need to be “fixed.”
Additionally, the group proposes establishing an NIH Office of Disability Research to coordinate research activities involving people with disabilities and increase representation of people with disabilities at all research career levels; ensuring that disability inclusion and anti-ableism are integral to all diversity, equity, inclusion, and accessibility efforts; and implementing accountability structures to collect disability data across NIH data systems and promote progress and transparency.
Over the past year, the NIH has made progress in codifying these recommendations, with one culmination being the designation of people with disabilities as a population with health disparities. However, the policy passed narrowly after an advisory committee initially rejected the proposal, and not surprisingly, that committee did not include anyone with a disability.
This designation was accompanied by a significant investment to establish a new research program focused on the intersectionality between people with disabilities and other populations with health disparities, including racial minority groups, people of low socioeconomic status, gender and sexual minorities, and rural communities, with clear benefits for residents of the South.
These guidelines provide a framework for breaking down institutional barriers and promoting inclusivity within research institutions. Their enactment will provide a structure and ultimately a model for state and local governments, especially in the South where policies currently limit these systems.
State anti-DEI campaigns harm researchers with disabilities and run counter to NIH promises. These campaigns severely hinder efforts to increase the number of researchers with disabilities by perpetuating exclusionary practices, ignoring accessibility needs, promoting discriminatory attitudes, and limiting funding for disability inclusion campaigns. Anti-DEI campaigns prioritize traditional qualifications over diverse perspectives and erect systemic barriers to people with disabilities entering the research field. Without sufficient accessibility measures, support, and resources, researchers with disabilities face challenges in fully participating in academic activities and accessing advancement opportunities. It is important to counter these barriers by implementing proactive measures that prioritize accessibility, support, and equity for people with disabilities in research and academic environments.
While this new NIH initiative is promising, progress cannot be rushed. The need to create an inclusive field of research that embraces professionals with disabilities has never been more pressing. Disabled researchers in the South, facing inequality and poverty traps, are especially vulnerable. In this context, we urge NIH to swiftly implement the Task Force’s recommendations, especially with regard to ensuring that all NIH efforts are rooted in promoting diversity, equity, and inclusion. This will require not only revising existing policies and training programs to incorporate anti-ableism principles, but also mandating that all research in which NIH is funded or involved be conducted from an intersectional perspective that supports these principles.
As we strive for more equitable and inclusive research environments, we should be guided by Aurora Levins Morales’ second principle of disability justice: “We are guided by those who know these systems best.”
Elizabeth Weaver II, a queer neuroscientist from Atlanta, lives with ME/CFS. She is the associate director of the Brain and Behavior specialty and affiliate faculty at Georgia State University’s Center for Leadership and Disability. Kiana Jackson, a Black researcher and data scientist from Albany, Georgia, lives with Charcot-Marie-Tooth syndrome. She is the director of data and research at the New Disabled South.