The Community Research for Health Equity (CRHE) program, managed by AcademyHealth and funded by the Robert Wood Johnson Foundation (RWJF), supports community-led research to address local health care system issues of importance to communities of color, people with disabilities, LGBTQ+ individuals, and other historically marginalized populations. Over the next year, we will be featuring interviews with CRHE grantees to showcase and celebrate their work during relevant celebration and recognition months. In the third interview of this series, AcademyHealth Research Associate, Maura Dugan (she/her), speaks with Dennis Heaphy (he/him), Health Justice Policy Analyst, and Taline Alonso da Silva (she/her), community-based researcher, at Disability Policy Consortium to discuss their current project and to celebrate disability research during National Disability Employment Awareness Month. Disability Policy Consortium’s project examines whether and how intersecting racism and ableism prevent Black, Indigenous, People of Color with Disabilities (BIPOC-PWD) from accessing home and community-based services. The conversation has been edited for length and clarity.
Maura Dugan: National Disability Employment Awareness Month celebrates the value and talent that workers with disabilities add to America’s workplaces and economy, and the theme this year is “Access to Good Jobs for All.” Could you talk about how hiring people with disabilities at Disability Policy Consortium is integral to advancing your mission and the work you do?
Dennis Heaphy: The Disability Policy Consortium could not or would not exist without our workforce, which is primarily comprised of folks with disabilities. Our mission is to support the civil rights of people with disabilities and to do that, we need to reflect that mission. We have a very diverse workforce with folks who represent different cultural and ethnic backgrounds, racial identities, sexual orientations, gender identities. We are a microcosm of the larger disability community. Our goal is to represent that population so we can advocate effectively and authentically with the population as members of the population.
In terms of employment, we view that as central to what it means to advocate for the rights of people with disabilities in general. Our employment is all built around providing opportunities for people to maintain their employment and optimize their capacity to do their jobs. I would say that our research is central to that, and how we employ folks within our research projects. We employ lived experience (LE) experts. These are folks who are often underemployed, but they have skill sets that they've not been able to use. It's also an opportunity for us to develop an advocacy base of folks whose advocacy is based on evidence-based research. They can bring this research ability into the advocacy they do in the community.
Maura Dugan: Your project investigates barriers for accessing home and community-based services for BIPOC-PWD. How did you select your research question?
Dennis Heaphy: We chose the research question because we know that there is an inequitable access to home and community-based services (HCBS) among different populations with disabilities. We wanted to better understand what access to HCBS is like for people whose primary language is Spanish and people whose primary identity is Black or African American. We wanted to do the research in one particular community in Western Massachusetts because it is both rural and urban, and has Spanish speaking people with disabilities. We're engaging with partners and lived experience experts from that community.
Taline Alonso da Silva: People with disabilities who speak Spanish as their primary language, and English as the second language, sometimes do not have the opportunity to speak for themselves. We're going to be giving them the opportunity to tell us their stories through focus groups and interviews. They will actually be heard, because sometimes they are not heard. The system often doesn't understand their needs.
Maura Dugan: Your CRHE project is led by researchers who identify as people with disabilities; how does being part of the community of focus inform your work?
Dennis Heaphy: I'm not a person of color. My primary language is English, but I do have a disability. And so, at that level I understand the broader framework of what it's like to have a disability and rely on HCBS. From that perspective, I can engage in this research and understand what it's like to have barriers to being able to engage in the community and being able to live my life fully because of those barriers that are there. It’s about ensuring that people have the maximum opportunity to live full lives in the community, and employment is part of that.
Our research is about empowering people and ensuring that systems change occurs at the local, state, and federal level. Everything that we do is about engaging people with disabilities in research together as a form of liberation. Our research is a means of advancing civil rights. It's not research to get outcomes for journals. It's about research for the purposes of advancing the rights of people with disabilities. We adapt the research we're doing based on what people's experiences are doing the research. That's why the LE experts are so important. It‘s critically important that they're not just doing the research on the ground in terms of asking questions or conducting the interviews. But they're actually part of the development of the guide, the questions and also analyzing the data, and then at the end working with us to develop what the policy implications will be. It really is a full community approach to research which is radically different than the way research has been traditionally done.
Maura Dugan: Can you talk about the importance of involving the lived experience (LE) experts in your project?
Dennis Heaphy: I love working with LE experts because these are people who are bright and they're invested, but they've not necessarily had the opportunities to engage in research or the opportunity to engage in systems change. Most of our LE experts are women of color with different types of disabilities. The diversity of our LE experts is what excites me because they really are the disability community. They bring different perspectives to the research, not just because of the different types of disabilities they have, but because of lived experience, whether it be sexual orientation, gender identity, or racial or linguistic background. We wouldn't be able to do this project without the diversity of the LE experts we have because they are reflective of the population we wanted to work with, and better understand. The research would not be valid without their voices and without their perspectives. I think that's the bottom line is, I would not be able to authentically do this research without them.
Taline Alonso da Silva: It’s important to have the actual community talking about the community instead of outsiders talking about the community because the community knows their struggles. They know what it is to be a disabled person. I think that to give a voice to the community is our goal and opportunity with this project.
Maura Dugan: How do you want to celebrate and think about your work, and the future of disability research?
Dennis Heaphy: It is very exciting to see this research move forward, and to learn from the community that we're working with. What are they experiencing, and what are the policy recommendations that they make? And what can we learn that the state could actually implement, what will the local community leadership implement that may impact access to the home-based services for these populations.
Taline Alonso da Silva: I want to celebrate conducting research that can be useful for the medical system here in Massachusetts, and in the entire country. Because I do not believe in research without purpose, and this could improve people’s lives.
If you would like to read more about the Disability Policy Consortium’s CRHE grant, you can view that here. To watch an interview with Dennis Heaphy and Disability Policy Consortium’s former Executive Director, Colin Killick, on the value of community-led research, you can view that here. Earlier posts in this series featured CRHE grantees during Pride Month and Disability Pride Month. This work is made possible with a grant from the Robert Wood Johnson Foundation (RWJF). The views expressed here do not necessarily reflect the views of RWJF.