Christina Applegate’s Emmy appearance, wherein she walked onstage using a cane and spoke openly about her multiple sclerosis—”Oh my God,” she joked about the standing ovation, “you’re totally shaming me with disability by standing up”—was a welcome sight for those of us living with disabilities and advocating for disability justice.
The increasing visibility of disabled people in the entertainment industry should also serve as an opportunity to launch an important dialogue about other spaces where disabled people all too often go unseen. Academic research is one of those spaces.
As a person with invisible disabilities, I struggled during graduate school to obtain accommodations and was frequently faced with interpersonal and structural ableism. I saw friends and colleagues whose disabilities were harder to hide get pushed out of research. We received a singular message loud and clear: Disabled people do not belong in research.
This message, while upsetting, was accurate: The way research, especially academic research, is currently conducted is exclusionary and even harmful to disabled people. But that cannot stand. If we want to truly advance health equity, health research must fully include disabled people as researchers and collaborators.
The National Institutes of Health’s (NIH) recent announcement designating people with disabilities as a population with health disparities is an important first step. The designation, according to the NIH, is the beginning of a concerted effort to ensure the inclusion of people with disabilities in NIH research. That’s encouraging.
But we have a ways to go. While up to 27% of adults in the U.S. are disabled, less than 10% of science, engineering, and health doctorate holders are disabled. Additionally, only 1.3% of disabled principal investigators received research funding from NIH in 2022. This means that the number of disabled people working as health researchers is nowhere near reflective of the number of people living with disabilities, navigating the healthcare system, and experiencing first-hand what’s at stake when research leaves us out.
The problem is systemic as well as societal. Because higher education is expensive, time consuming and inaccessible, many disabled people have been prevented from pursuing it. It is even more difficult for disabled Black, Indigenous, and Hispanic/Latino people to access higher education due to the added barrier of structural racism. When they do pursue higher education, disabled students and researchers often find that academia values capitalist hyper-productivity over individual and community wellbeing. It can therefore be an unwelcoming and disabling environment. As a result, many disabled people are pushed out of research.
Given this context, it is not enough to simply recommend we include more disabled people in academia without solving the ways that it can be a harmful environment for them. Instead, we must prioritize equitable and accessible research environments both within and outside academia.
Academic ableism and the profoundly unequal access to higher education in the U.S. signal the need for alternative approaches to including disabled people in research. Health equity research as a whole has been critiqued for being harmful and extractive, excluding the voices and needs of the most impacted communities. Disabled people, especially those who are racially marginalized, are disproportionately impacted by these harmful practices.
To conduct more equitable research, we must directly involve disabled people as co-investigators, data analysts, and decision makers. This means compensating disabled people for their expertise, even if that expertise is not derived from the higher education system. To do this, funding agencies should designate funds to pay disabled people. Additionally, critical participatory action research should be prioritized over hierarchical approaches. This will require dismantling research practices that stigmatize and devalue disabled people, demand urgency at all costs, value quantity over quality, and insist upon perfection. These practices all contribute to the continued exclusion of disabled people.
Including disabled people in health research may not seem important to those who are not disabled, but disability becomes more common as we age, so many of us are likely to become disabled at some point in our lives. We also just witnessed the addition of up to 1.5 million more disabled adults in the U.S due to COVID-19. Additionally, social inequality in the U.S. means that marginalized people are faced with disproportionate exposure to environmental risks, stress from discrimination, and lack of access to basic needs. All of these factors can lead to further disability. This does not mean that we should not address the ways that society is disabling. What it means is that providing a more supportive society for disabled people should be prioritized now.
Including disabled people as co-investigators in health equity research will no doubt be challenging; it will require reframing the research process and shifting power. But there are many examples of how this work can be successfully undertaken.
For instance, the Patient-Led Research Collaborative currently uses a disability justice approach to conduct long COVID research. The mass deaths of disabled people during COVID-19 have clearly shown us that addressing the continued devaluation of disabled people is a matter of life and death.
It is time to prioritize the needs of disabled people, and health researchers cannot and should not do that without us.