I am a brown, disabled, adopted woman who acquired transverse myelitis as an infant, and I use a manual wheelchair. My experiences growing up with these identities shaped those I developed later—who I am as a person, researcher, and activist. I am proud of all of my identities, and I am excited to join ACL as the Director of the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR), where I can put all of them to work!
It’s fitting to be writing this post as we celebrate the 31st anniversary of the Americans with Disabilities Act (ADA). For as long as I can remember, I have been advocating for disability rights—starting with my own. Since high school, the ADA has been at the core of that work.
Although I started high school nearly a decade after the ADA became law, my school was not accessible. Ramps were in poor condition, not compliant with code, and often blocked. I could not take required laboratory science classes and other electives that interested me. And, many leaders in the district did not believe in my ability to succeed because of my disability.
Assigned to write about a rule or law that I felt passionately about, I chose the ADA. I remember staying up all night reading the legislation cover to cover! I also was introduced to my local Center for Independent Living, through which I met other disabled activists who supported me and my endeavors, educated me on the nuances of the ADA, and affirmed that I had the right to live the life I wanted to live, free from discrimination. Ultimately, the ADA armed me for a legal battle with my high school, when all other attempts to address accessibility issues proved fruitless. This experience, while arduous at the time, was pivotal for me. It taught me that I could make a difference and improve the lives of other disabled individuals.
College was an entirely different experience. The University of Illinois celebrates disability as diversity and provides many opportunities for disabled students to thrive. I was so enamored with this new life—where I did not have to fight for basic access to take a class, let alone participate in extracurriculars—that I stayed to earn my master’s and doctoral degrees. (And represented Team USA at two Paralympic Games in wheelchair racing!) My research program focused on psychosocial identity development from a social justice perspective, emphasizing disability identity development. That is, exploring how individuals develop a disability identity and make meaning of their disability experiences.
I began to think about how my racial identity may have affected my high school experience—my school and community were predominantly white. The experience of disability is shaped by the dimensions of race, gender, class, gender expression, historical context, and power imbalances. As a high school student, I did not have the intersectional language or knowledge of systemic oppression to recognize those realities, but as a researcher today, I am committed to ensuring that these issues are studied deeply, meaningfully, and competently.
My Ph.D. journey also taught me that I did not need to separate my activist identity from my researcher identity. I was floored when my mentors told me that scholar-activism was a "thing.” Rather than threaten my objectivity, my identities enable deeper questions to be interrogated. Historically, research has been done on or about disabled individuals, not with or alongside us. But “nothing about us without us" also applies to research!
Further, research must include all of us. Oftentimes, research takes place specific only to one type of disability. While sometimes this is helpful for depth of a specific issue, we must also consider the broader disabled community. In our work at NIDILRR, I want to include individuals with apparent and non-apparent disabilities, across many disability groups—physical, psychological, intellectual, sensory, learning, behavioral health, and chronic illness, including COVID-19 long haulers. We also need to be intentional about including people with varied backgrounds and experiences, particularly people from underserved and marginalized communities. The diversity of the disability community is an asset, and our work must be inclusive of all people with disabilities.
I also hope to build upon the work NIDILRR has done to connect our grantees and research to other programs across ACL. Throughout my post-doctoral time and as a faculty member, I had several touchpoints with ACL's National Paralysis Resource Center and several of the University Centers for Excellence in Developmental Disabilities. Through work with the UCEDDs, I learned the value of building research relationships with the Intellectual Disability/Developmental Disability community. Together, we tackled challenges to make our research inclusive and train the next generation of disabled researchers. We became intentional about the anchors for scales and developed age-appropriate visual aids. We modified interview protocols to allow for individuals using alternative or augmentative communication devices to contribute and worked with software developers to improve the accessibility of commonly used online survey tools. Our research was more valuable as a result.
It is my hope that we, as a nation, commit fully and wholeheartedly to meeting the needs of all disabled Americans. Disability and the intersectional systemic barriers impacting disability must no longer be an afterthought. We need all of us—disabled and non-disabled, across the disability networks, including researchers, advocates, and service providers—to make this happen. To make this a reality, we must support each other and amplify each other's messages. Let's get to it!