A new NIH program will allocate nearly $30 million to 10 groups over five years to examine the impact of ableism on various health outcomes for people with disabilities and to develop strategies to combat these disparities.
The studies investigate ableism towards several different populations, including people with low vision trying to access services and maternal health outcomes among Medicaid beneficiaries with intellectual and developmental disabilities.
Born out of the early days of the Covid-19 pandemic, when doctors ignored disabled peoples’ needs when triaging patients in hospitals, this project is part of a recent shift by the NIH to treat the country’s largest minority group — more than 27% of the United States population in 2022 — as a distinct demographic with unique health outcomes.
“It’s an evolution. As we learn more, we do better,” said Theresa Cruz, director of the National Center for Medical Rehabilitation Research, which will run the program.
Established in the wake of the Americans with Disabilities Act in 1990, the Center acts as the NIH’s research arm for improving the health of people with disabilities — whether that’s through assistive technology, relearning motor functions or other rehabilitative therapies.
To better understand why the program is tackling this issue now, STAT spoke with Cruz. Before her role at the NIH, Cruz conducted research at the Rehabilitation Institute of Chicago on motor control and gait impairments of the lower limb following stroke. She also leads the NIH Brain Research through Advancing Innovative Neurotechnologies (BRAIN) initiative, which promotes the research and development of novel neurotechnologies.
This interview has been edited for length and clarity.
You’ve never funded a program explicitly targeting ableism in the past — why now?
A year ago, the NIH designated people with disabilities as a population that experiences health disparities. When you do that, you open the door to disability not as the outcome, but disability as a demographic. What are the structural things that are contributing to poor health outcomes, like with other minoritized populations?
NIH is really founded on a medical model of disability, where disability is the outcome of disease and injury, and it’s usually considered a very negative outcome. That’s incredibly ableist. We now talk about the social model of disability, where disability is a construct that comes from a person’s ability and their environment. One model is not better than the other. They both have their purposes, they’re both important for us to look at if we’re going to improve the health of everyone, which is our mission.
People with disabilities and disability studies’ scholars have been talking about a social model of disability for a long time. Why is the federal government moving away from the medical model now?
I think a few things have changed the landscape a bit. I think we’re doing a little bit better job of listening to our constituents. They’ve been very vocal about how NIH can prioritize research. And we very much appreciate that they are communicating with us.
The other thing is, unfortunately, Covid-19 brought some of these issues to the forefront. The HHS Office of Civil Rights had to issue guidance to states, reminding them that it’s illegal to triage based on disability status. That was a very real example where the medical system was not valuing the lives of people with disabilities as they should, and that negative health outcomes could be the result of attitudes around disability or barriers to access. Since it’s NIH’s job to boost the health of all people, and that includes the health of people with disabilities, this was a natural next step as we move into the more social model of disability.
Can you explain more about how discrimination can affect health outcomes that are separate from a person’s disability?
When you look at the health disparities data for people with disabilities, you see things that to me don’t make a lot of sense. Like, why would someone with low vision or deafness have different maternal outcomes? Or different cancer screening rates for people who use wheelchairs compared to people who don’t? When you look at that, it has nothing to do with the disabling conditions, it has everything to do with the barriers and the environment. If you’re not able to access the mammography, you might not be able to access your screenings or an adjustable exam table. You might not get your pap smears. Those are things that have nothing to do with the cause of the wheelchair use, that’s the environment putting up a barrier between health behaviors.
When you look at the literature on how health care providers feel about people with disabilities, they will report not knowing what their ADA responsibilities are or not having the same quality of life rating for a person with a disability compared to how the person feels themselves. So if there’s this constant lessening of the person with disability or assumptions about what they want or their behaviors — if a woman comes in with pelvic pain and you don’t ask about sexually transmitted diseases or possibility of pregnancy because you’re assuming that she’s not sexually active, you know that that is a disservice to them. And that’s the ableism talking.
How much of this is ableism and how much of this is poor training for health professionals who treat people with disabilities?
Ableism is very entrenched in our society, so I don’t want to say it is this group’s fault or this group’s fault. Before the ADA, it was much more common that people with disabilities were in homes and incarcerated, and were not part of society, not by their choosing. So there’s a long history of this country not treating people with disabilities with the respect and the dignity that they deserve. I don’t want to say that this is a medical school problem.
That said, we need more disabled doctors. We need more disabled researchers who are bringing that perspective to the work. One of the studies that we’re funding is looking at ways to do continuing medical education. Can we do it? How do we do it? How much of it do we need to do to make a difference? There’s lots of research questions there.
And we can’t address health disparities if you’re not talking to the community groups and doing community engaged research. So this opportunity is a way for NIH to directly interact with groups that work on disability health and reducing health disparities on the ground. We’re hoping that we can reward their work and their ideas for how to bring down some of the barriers that I mentioned earlier and get people access to the health care they need and deserve.
Researchers and advocates have recently pushed for better disability data — both demographic data and health data. How does the lack of a codified definition of disability influence this work to try and untangle ableism in the health context?
My feeling is, I’m not here to police who is or is not considered disabled. My goal is to create the research and support the research that will help people regardless of whether or not they identify as being disabled. That’s kind of the universal design or the social justice model of disability.
The goal is that we don’t have to rely on check boxes for who gets certain accommodations, that they are not based on whatever statute is applied, that we have spaces and places and policies and attitudes that allow for people with disabilities to do their best and to thrive. I wonder if I will look back 10 years from now and say the most influential thing that we did was this set of grants. We’ve done a lot of good work over the years, but this is different, this is distinct.
Why is this different?
We didn’t even use the word ableism. The NIH had to learn that.
We first talked about this program with our advisory board, probably about 2.5 years ago. We have a committee that advises [the Center], and it includes people with disabilities and advocates. When we first were knocking around this idea, we brought it to them to say: “Is this something we should be doing? It’s different, but we think it’s important. What do you guys think?” That’s where we got some of the feedback of, “Yes, you should be doing this.”
STAT’s coverage of disability issues is supported by grants from Robert Wood Johnson Foundation and The Commonwealth Fund. Our financial supporters are not involved in any decisions about our journalism.