Feature Issue on Engaging Communities Underrepresented in Disability Research

I am a Paralympic medalist, an Indian adoptee, a disabled woman who uses a wheelchair, a person of color, a researcher, and an activist. I was adopted from India when I was two months old and got sick with transverse myelitis when I was just four and a half months old. I initially struggled, until I found the power of representation through the disability community. This community taught me how to live my life with a disability, to learn alongside people with many different disabilities.

These individuals became my friends and support, especially when I encountered discrimination in high school due to inaccessibility and attitudinal discrimination. This discrimination taught me the value of activism and how to be that representation for others, and I did go on to sue my school district in federal court. The easy narrative is to tell the disability story of fighting for greater accessibility and fighting against ableist attitudes that I encountered, like trying to register for an applied technology class because they had a really cool wind tunnel. I was a wheelchair racer, and was intrigued by the experiments and the data that a wind tunnel could generate, but was not allowed to register for the class. The messier story to tell is what it really meant to be that Brown, 14-year-old disabled girl taking on the white, non-disabled school district administration. At my school, the Black students were bused in from the city and there was me and a Korean adoptee, who were essentially the students of color in the school. What I’ve learned throughout my life is that we can’t be afraid to talk about that, to dissect it, and study it. The layers and systemic forces of oppression that I experienced are at the heart of what we mean by intersectional research.

Prior to my role at NIDILRR, I was on the faculty at Vanderbilt University. I studied disability identity and worked closely with colleagues at the University Center for Excellence in Developmental Disabilities (UCEDD) there. And before that, I was a post-doc at the University of Kansas. Today, I'm working alongside many of you across the nation to push the field of research to remember that ‘nothing about us, without us’ includes research. In fact, it includes the entire research enterprise.

I'm talking about the investigators, the people who are doing the research, the peer reviewers, the people deciding who gets funding to the project officers, the people supporting the people applying to do the research, and all of the individuals who work behind the scenes. Our lived experience matters, regardless of the fancy letters after a person's name. It's our experience.

What is that added value that multiply diverse people with intellectual and/or developmental disabilities (IDD) bring to the table? And why is it imperative that we create seats at our table for these individuals to be co-investigators alongside of us? We must include people with disabilities in the research enterprise, especially those with the highest support needs, who are often left out of the conversation. This is my jam, my passion, and what invigorates me to really lead NIDILRR with intentionality. The time is now. Why? Well, there have been some important awakenings, if you will. Harnessing them will drive us forward, faster.

Yet, it's critical to know that none of this is new and it's not to undermine the decades of work done by many multiply marginalized individuals in the disability community and allies. That work gives us the platform and foundation to reinvigorate attention to disability justice. The Black Lives Matter movement and the murder of George Floyd and countless other Blacks served as a wake-up call for the nation to address its racial strife and tensions. Asks were made of us as people of color to educate, to teach, and to explain – all while we were grieving, exhausted, and processing the effects of historical trauma. As we see this history in the making, we must push even more for the inclusion of people with IDD from underserved racial, ethnic, linguistic, and cultural groups in research. Representation matters.

It mattered for me as a young girl, watching the Boston Marathon. That was the first time I saw adults with disabilities competing and learned I could be one of them.

Another important moment for representation came when President Biden signed equity-focused executive orders requiring disability to be considered in equity, diversity, and inclusion work. Weaving elements of these executive orders throughout the grant making process allows us to really begin to address systemic inequities in federal funding programs, processes, and policies that may serve as barriers to equal opportunity.

As we look further into equity matters in research, it is critical to acknowledge the intersection of disability studies and critical race theory, or DisCrit, which examines how racism and ableism function in tandem to relegate people of color, people with disabilities, and people of color with disabilities to the outskirts of society. The #DisabilityTooWhite hashtag movement is a call to action for white people with disabilities to focus on voices that have historically been silenced.

When we look at funding research, we can create opportunities to improve representation in historically underserved communities. At NIDILRR, we recently changed our peer review criteria related to project staff to emphasize disability, for example. Through the public comment process, we also added an emphasis of individuals with disabilities who have the greatest support needs. We are proud of this step and the signaling to the community of greater intentional inclusivity and employment of people with disabilities, especially those with the highest support needs.

It was a huge win to be able to include Talila A. Lewis’ definition of ableism in a recent federal funding notice. Lewis is a Black, disabled, abolitionist community lawyer, educator, and organizer.

As a Brown disabled woman, I sadly experience ableism regularly, and to have this named in our funding opportunity announcement made me feel seen and that the research being proposed would include me and my struggles. I hope others felt this, too.

When I first entered the world of research, I found the state of disability representation to be dismal, and my priority as NIDILRR director is to continue this work to improve it. Recently, at the International Spinal Cord Society Scientific meeting, a Brown woman in a wheelchair came up to me and we were both so excited that we existed in that space that we took a picture for social media before even exchanging names. That’s the power of representation.

Research teams are stronger when we include individuals with lived experience, regardless of titles and degrees after one's name, especially from those voices that are traditionally left out. We know that from the very few statistics that exist about faculty members’ disabilities, that approximately 4% of faculty across the United States have disabilities. I think that number probably would be higher if we were a little bit better about encouraging self-disclosure. I would love a demographic survey of the complexion of people's research labs and their community collaborators. That is an area fraught with layers of self-disclosure and concerns over how that data would be collected and used.

For a long time, the academic field reinforced the notion that we must separate research from a lived experience of disability. For a long time, I thought they had to be separate because that’s what was taught. Fortunately, I had mentors who challenged me to bring them together.

And what a beautiful place it has been to be among both worlds. Even if you are not a qualitative researcher, you bring your whole self and your identities and your lens to the work that you do and to your analysis. And so, I firmly believe that all of us should be brave enough to disclose our disability status and the disability status of our research team members to be able to help to normalize this in conversation.

We must also make sure that we're engaging with the disability community to figure out what should be researched. If we're at the table when these ideas are being talked about and planned, it can help to remind us that we must be included throughout that entire process. Individuals with disabilities must be co-researchers on the team, but we cannot stand for the involvement of people with disabilities to be a box to be checked or an afterthought. We must be very careful to not tokenize by putting someone on a team without providing the supports and guidance to succeed, for example, or without listening to their input, putting their name on the finished work, or compensating them for their time. If we do this with intentionality, the value added is astronomical. Having Black and Brown individuals with IDD on your research team will allow your studies to be more relevant and to reveal blind spots that would potentially not otherwise be revealed. If you are looking to understand the intersection of daily experiences of racism and ableism, for example, keep in mind participants’ cost to add minutes or data to a phone plan in order to participate in an intervention. And be aware that interventions may not be equally effective for certain groups.

Anjali Forber-Pratt, with Kolton.

Finally, remember that much of this research is really still in its infancy because of the well-justified mistrust many Black and Brown individuals have in the research field. Still, I believe in the right to science for all, and the time is now to capitalize on the convergence of the renewed disability justice and racial equity movements and make up for decades of excuses. What will you do to advance research, equity, and inclusion for Black and Brown individuals with IDD on your team?