Disability is Diversity: An Interview with NCMRR Director Dr. Theresa Cruz

It was a milestone for people with disabilities: One year ago, in September 2023, the National Institutes of Health (NIH) designated the population as one that experiences health disparities. Years in the making, the decision had important implications for disability communities—and for the National Center for Medical Rehabilitation Research (NCMRR), which was established within NICHD in 1990.

“The designation has been very well received by disability and research communities,” said NCMRR Director Theresa Hayes Cruz, Ph.D., who joined NICHD in 2009 and has led the center since 2020. “This was something disability communities had been asking for a long time. It brings us into alignment with our Department of Health & Human Services (HHS) colleagues, giving us a common definition for who is experiencing health disparities. The decision also brought a lot of welcome attention to disability in general, and to research on disability more specifically.”

The World Health Organization estimates that more than 1 billion people on the planet experience disability. In the United States, the Centers for Disease Control and Prevention (CDC) estimates that about 70 million adults—more than 25% of the adult population—live with some type of disability. Collectively, people with disabilities comprise the largest minoritized group in the country.

“Most people will probably experience a disability or a disabling event sometime in their life, even if only temporarily,” Dr. Cruz said. “Disability and participation by those with disability are just another aspect of a diverse society. The challenges arise when the environment doesn’t adapt with the needs of the people, like by using universal design principles. Someone who uses a wheelchair needs a way to get to the second floor of a building. The problem isn’t the wheelchair or the person; it’s the environment causing the disability experience.”

Understanding the concept of ableism—defined by the American Psychological Association as “prejudice and discrimination aimed at people with disabilities”—is key to addressing disability-based health disparities in clinical, biomedical, and behavioral research. ?

“There is this feeling that ‘able-bodied’ is the ideal, and that everyone different is somehow less,” Dr. Cruz said. “This shapes the public view of health, wellness, and normalcy, and creates health disparities. Society has different expectations of people with disability. They are not given the same access to health care, to nutrition, to education, to all the social determinants of health.”

Ableism is an entrenched concept, and disability justice activities are hardly new. In the United States, the fight for disability civil rights led to the passage of the Rehabilitation Act of 1973—which prohibits discrimination on the basis of disability in programs and activities that are federally funded or conducted—and subsequent measures such as the Americans with Disabilities Act (ADA), which passed in 1990.

“Before the ADA, fewer people with disabilities were out and about in society,” said Dr Cruz. “So people didn’t think, ‘Oh, we need ramps and sign language interpreters and Braille.’ But now, people are used to people with disabilities being in the community. Schools have kids with and without disabilities in the same classroom. We have sign language interpreters at news conferences, and automatic doors. That just wasn’t the experience 50 years ago.”

Which is why Dr. Cruz feels the new designation may help answer critical questions that couldn’t be easily addressed before. For instance: How is ableism measured in a health care setting? And: What is the best way to engage with clinicians and other providers about disability-related topics?

“This designation allows researchers to say that people with disabilities are a demographic,” said Dr. Cruz. “They are a group of people who experience health disparities unrelated to the disabling condition. For example, people in wheelchairs are less likely to get certain cancer screenings because they can’t get into the mammogram machine, or because assumptions are made about their reproductive health and sexual activity. These disparities are more related to ableist environments and perceptions than to why a person may use a wheelchair.”

Dr. Cruz said that a funding opportunity about ableism , put out by NCMRR and partner institutes and centers around the time the designation was made, “sparked an incredible response from the field” and bolsters a larger effort to think anew about engagement.

“One long-time disability rights slogan is ‘Nothing about us without us,’” Dr. Cruz said. “So, we are very cognizant about representation for people with disabilities. Several years ago, NCMRR decided that when we put out a call for applications, they must include a plan for the inclusion of lived experience in the research. We want to know ‘How are you engaging with disability population to improve the research?’ That approach has been helpful in getting more people with disabilities into research.”

But, she added, it’s just a start.

“We have to keep asking: ‘How do we make NIH a welcoming place for all people?’ How do we say that we want and need their perspectives and skills? Because we can’t afford to leave talent on the bench.”

Or to put it another way: Disability is diversity. Dr. Cruz points to the NIH strategic plan to improve diversity, equity, inclusion, and accessibility (DEIA).

“We’re doing things to increase the accessibility of the NIH environment to make it more welcoming for visitors, employees, and grantees,” she said. “We hosted Disability Pride Month training sessions in July, and hundreds of people came to them. We’re constantly evaluating barriers to DEIA and ways to address them.”

Which means there’s more work to be done, and more opportunities for better engagement—not only with disability communities, Dr. Cruz says, but also with groups that provide care, support, and companionship to these communities.

NCMRR led the recent launch of the Community Champions for Disability Health Challenge . Its aim is to complement traditional research with the work of community groups that are addressing health equity for people with disabilities. Prizes will total $485,000.

“We want to know what great work is being done, and what ideas people have for taking it to the next level,” said Dr. Cruz. “I’m so interested to hear what community groups are doing, how we can engage with them—and how we can do better.”