Disabled scientists are often left out of academia. The NIH can help change that

Despite being the largest minority in the nation, disabled people like us have been structurally and institutionally obstructed from entering research-dominated fields. When they do manage to break through, they are seldom given the support and accommodations needed to sustain employment and thrive in their 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 scientific, policy, teaching, and administration areas.

Unfortunately, there is little formal data to support what we have witnessed. Research supports the idea that gender, ethnicity, and sexual orientation diversity benefits institutions, including attracting high-level talent and increasing profitability, to name a few. In science, that translates to increases in publications and paper citations, better preparation, and timeliness in methodological approaches. Without proper research and analysis, decision-makers may ignore the benefits of including disabled researchers and disregard efforts to increase their presence in science.

But the representation of disabled principal investigators in academia has declined, dropping from 2% to 1.3% between 2008 and 2022, even though disabled workers’ overall labor force participation rate increased during that period. The NIH needs to use its power over the scientific ecosystem — and its newly published set of landmark recommendations on disability inclusion — to reverse this trend.

Other statistics paint a similar picture. The unemployment rate in 2019 among scientists and engineers with a disability (5.27%) was higher than the national unemployment rate (3.7%). The disabled scientists who were employed received fewer training and funding opportunities like grants, assistantships, fellowships, or scholarships, than did those without disabilities. And while the NIH has been working toward inclusion of underrepresented groups in the scientific workforce, disabled people have been mostly overlooked in those missions.

Meanwhile, in the past two years, an astounding 81 anti-diversity, equity, and inclusion bills in 28 states have been introduced across the U.S., further hamstringing attempts to build equity for disabled populations. 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 employment or promotional decisions.

Thirteen of those states are in the South, which already has the highest rate of disability of any U.S. region at 13.8%, according to Census records. It also lags far behind in benefit-rich programs like Medicaid expansion.

We’re disabled researchers in the South, and we fall under other intersectional marginalized labels, such as queer and Black. So we experience a unique set of physical and systemic challenges, including inaccessible research facilities and equipment; the inability to join in-person study sections, meetings, symposiums, and social events that build interpersonal relationships that often lead to professional opportunities; implicit biases; crumbling diversity and inclusion policies; and limited support services. Navigating these barriers creates an overpowering burden for disabled people entering the field. Without systems in place to increase equity, such as strong DEI, participation from disabled researchers will continue to decline, especially in the South.

On Dec. 30, 2022, an NIH subgroup on individuals with disabilities, within its Working Group on Diversity, published a set of landmark recommendations on ways to increase disability equity and inclusion in scientific research.

The working group recommended that the NIH address structural ableism (i.e., the belief that people with disabilities are flawed and less valuable than non-disabled people) and promote disability inclusion through internal initiatives, expanded engagement with disability communities, and formally designating people with disabilities as a health disparity population to bolster research funding. They also recommended updating the NIH’s mission statement to remove ableist language. For instance, some scholars argue commonly used phrases in NIH literature, like “reducing disability,” perpetuate ableism by directly or indirectly calling for the erasure of people whose disabilities either cannot be cured or suggesting that disability needs “fixing.”

In addition, the group suggests establishing an NIH Office of Disability Research to coordinate research activities involving individuals with disabilities and advance representation of people with disabilities throughout all research career ranks; ensuring that disability inclusion and anti-ableism are integral to all diversity, equity, inclusion, and accessibility efforts; and collecting data on disability across NIH data systems and implementing structures of accountability to foster progress and transparency.

Over the past year, the NIH has made progress in codifying those recommendations. One of the victories included designating people with disabilities as a population with health disparities. However, the policy narrowly passed after an advisory committee initially dismissed the proposal. Unsurprisingly, that committee did not include anyone with a disability.

Alongside this designation came a significant investment in establishing a new research program that focuses on the intersectionality of disability and other populations designated with health disparities. These are inclusive of racial minority groups, those with lower socioeconomic status, gender and sexual minorities, as well as rural communities, which will explicitly benefit southern populations.

These guidelines provide a framework for deconstructing systemic barriers and promoting inclusivity within research institutions. Enacting them will provide structure and eventually a model for states and local governments, especially in the South, where these systems are currently curtailed by policy.

State anti-DEI initiatives hurt disabled researchers and sit in opposition of the work that the NIH has committed itself to undertaking. These initiatives will significantly hinder efforts to increase the ranks of disabled researchers by perpetuating exclusionary practices, overlooking accessibility needs, fostering discriminatory attitudes, and limiting funding for disability-inclusive initiatives. Anti-DEI efforts prioritize traditional qualifications over diverse perspectives, erecting systemic barriers to disabled people entering the field of research. Without adequate accessibility measures, support, and resources, disabled researchers face challenges in fully participating in academic activities and accessing opportunities for advancement. It is crucial to counteract these barriers by implementing proactive measures that prioritize accessibility, support, and equity for disabled individuals in research and academic environments.

As promising as this new NIH venture is, the progress remains unhurried. The need for creating an inclusive research field that embraces disabled practitioners has never been more pressing. Southern disabled researchers, facing inequities and poverty-traps, are particularly vulnerable. In this context, we implore the NIH to follow through promptly on the working group’s recommendations, particularly when it comes to making certain that all of NIH’s efforts are rooted in promoting diversity, equity, and inclusion. This would entail not only revising existing policies and training programs to incorporate anti-ableism principles, but requiring that any research that NIH funds or is involved with is conducted through an intersectional lens that upholds this tenet.

As we strive towards a more equitable and inclusive research landscape, we should be shepherded by Aurora Levins Morales’ second principle of disability justice: “We are led by those who most know these systems.”

Elizabeth Weaver II, a queer neuroscientist and an Atlanta native, lives with the disability ME/CFS. She is the associate director of the Brains and Behavior area of focus and affiliate faculty for the Center for Leadership and Disability at Georgia State University. Kiana Jackson, a Black researcher and data scientist native to Albany, Ga., lives with the disability Charcot-Marie-Tooth. She is the director of data and research at New Disabled South.