Embodying Advocacy, From Her Home to the House

September 27, 2024 | VOLUME 2, ISSUE 3

Rupa S. Valdez, PhD, is a Professor in the Departments of Systems and Information Engineering and Public Health Sciences at the University of Virginia. She is the cofounder and president of Blue Trunk Foundation, a nonprofit dedicated to providing information about accessibility to make it easier for people with disabilities to travel, and she serves on a number of boards, committees, and panels in the disability advocacy space. She has also testified before the House of Representatives on the topic of bridging health equity gaps for people with disabilities.

The majority of her work focuses on health disparity populations, including communities of color, rural communities, and the disability community. She draws heavily on approaches that center community engagement, such as community-based participatory research and co-design.

In addition to her academic training, Dr. Valdez has channeled her lived experience as a woman of color who lives with multiple chronic health conditions and disabilities into her research, teaching, and advocacy.

Read the Q&A below between Dr. Valdez and CHEST to better understand her tireless fight for accessibility and equity.

CHEST: How did you get started with disability advocacy?

Dr. Valdez: It’s sometimes hard to believe, but my first conversations about disability advocacy were with Judy Heumann, who is widely considered the “Mother of the Disability Rights Movement.” I was nearing the end of my doctoral training when I developed some significant disabilities and I was feeling very overwhelmed by what that meant for how I move through the world, including how I would navigate the big changes ahead, such as motherhood and transitioning to a faculty position. My sister, who is a lawyer for the state department, mentioned that she had a colleague at the state department who she took the bus to work with every day, and asked if I might be open to her asking this colleague if she had time to chat with me. During that first lunch together, I really had no idea about Judy’s incredible story and impact. What I experienced was this strikingly warm person who listened and planted the seed for thinking about my disability and the journey ahead as something that could be beautiful.

CHEST: Tell us about your experience testifying before the House of Representatives on bridging health equity gaps for people with disabilities and chronic conditions.

Dr. Valdez: I was honored to have the opportunity to testify on the topic of bridging health equity gaps for people with disabilities and chronic conditions before the Committee on Ways and Means, Subcommittee on Health in February of 2022. During my testimony, I sought to highlight six key points.

• Recognize barriers to health equity: I spoke about how the barriers to health equity for the disability community are numerous and complex, often related to broader social inequities, including education, employment, socioeconomic status, and histories of institutionalization, as well as factors more directly related to health care delivery systems.
• Expand legislation: I encouraged the now-realized recognition of the disability community as a health disparities population and the enforcement and expansion of legislation and regulations that are responsive to the needs of the disability community.
• Provide telehealth solutions: I acknowledged the need for telehealth solutions to be attuned to the lived realities and specific needs of disabled people.
• Collect comprehensive data: I encouraged a requirement for clear and comprehensive data collection across health systems to monitor and respond to health disparities faced by the disability community.
• Educate health professionals: I emphasized the need for the continued education of health professionals to encompass the needs of the disability community.
• Eliminate barriers for disabled health professionals: I noted the need to eliminate barriers to disabled health professionals entering and remaining in training programs and practices.

CHEST: What is one accomplishment that you are extremely proud of?

Dr. Valdez: I became significantly disabled when my daughter was just 1 year old. I went from being able to care for her in ways that many mothers, including myself at the time, might take for granted. I was able to breastfeed and hold her close to me, lift her from her crib and carry her to another room, prepare food for her, and push her to the park in a stroller. Afterwards, none of those things were possible.

As she grew to be able to crawl and walk, it was often difficult for me to be alone with her without someone helping me. For many years, I worried about what our relationship would look like as I felt the loss of the many ways I could no longer show up for her. I worried, too, that she would grow to feel, at best, distant from me and, at worst, a sense of resentment and shame. That fear was one of the reasons I decided not to have another child.

What I’m most proud of, then, is the way Leela and I have grown together. None of those fears came to pass. Instead, she asks to stay up late most nights to talk, is proud to tell all her friends about disability rights and disability justice, and takes pride in her ability to assist me as we travel across the world together.

CHEST: What are some of the biggest challenges that you face in your advocacy work?

Dr. Valdez: One of the biggest challenges I experience in my disability advocacy is deciding where to dedicate my time and attention. In the context of health sciences, my advocacy spans the local, within the UVA Health System and the local health district, to the national, as an advisor for the Patient-Centered Outcomes Research Institute, the Agency for Healthcare Research and Quality, the National Academies of Sciences, Engineering, and Medicine and the National Committee for Quality Assurance, among others.

In many spaces within the health ecosystem, the experience of disability has been historically absent from conversations related to diversity, equity, and inclusion. Often, this absence stems not from intentional exclusion, but rather from a lack of awareness and knowledge about the ways disabled people have been and continue to be marginalized. Many are unaware of the need for attitudes, structures, and policies to be reimagined to eliminate persistent inequities faced by the disability community.

There are many spaces in which disability advocacy is essential, but because of the persistent barriers, there are not enough disabled people who also have formal training in health sciences to engage in these conversations. Another challenge (and opportunity), then, is ensuring that my advocacy both focuses on eliminating these barriers and on creating connections between groups who want to engage in this reimagining and members of the disability community outside of academia who have valuable expertise to share.

CHEST: Tell us about your work in various associations. What initiatives have you helped launch?

Dr. Valdez: In addition to some of the organizations I mentioned above, I also serve on the board of directors for the American Association of People with Disabilities and as cofounder and president of Blue Trunk Foundation, a nonprofit organization dedicated to making travel easier and more enjoyable for people regardless of age, disability, or health condition. The initiatives I’m involved in across these organizations have informed policy, research agendas, reporting and training requirements, and practices related to accessibility and inclusion.

One of the local initiatives I’m most proud of took place during the early days of the COVID-19 pandemic. In my role, both as a faculty member within UVA Health and as president of Blue Trunk Foundation, I collaborated with many others from both organizations and with several other local community partners, including our local health district and our local Center for Independent Living, to create multiple vaccination clinics designed specifically to accommodate the needs of disabled people in Charlottesville and surrounding counties.

Our community partners reached out individually to their clients and members to encourage them to get vaccinated and to ask them what barriers they were currently experiencing that might prevent them from being vaccinated. We then worked directly with each person to ensure that their needs—whether related to transportation, ASL interpretation, low sensory environments, wheelchair accessibility, or anything else—were met. Many of these organizational relationships that allowed us to meaningfully address the needs of the local disability community continue today.

CHEST: Anything else you would like to share with us?

Dr. Valdez: Looking forward, I am particularly excited about a recently-funded five-year grant we received from the National Institutes of Health, focused on creating and validating measures of structural ableism—the processes, policies, and institutions that privilege able-bodied people over disabled people. This effort parallels foundational work across other forms of structural oppression, such as structural racism, classism, ageism, sexism, and heterosexism.

We will develop and validate both an individual-level and community-level measure of structural ableism and explore its relationship to health outcomes. Throughout this effort, we will ensure the diversity of experience and intersecting identities within the disability community is represented and engaged at all levels of this project. Through this work, we seek to lay a foundation for identifying, co-designing, and evaluating interventions intended to dismantle structural ableism.