Resource Type: Leader spotlights

For this installment of 5 Minutes With, NationSwell sat down with Kiana Jackson, Director of Data and Research at New Disabled South, to discuss the launch of the new think tank, Black Disability Institute. Housed under New Disabled South’s Research and Data team, the Black Disability Institute aims to initiate original research and bolster existing advocacy efforts examining issues uniquely affecting Black people with disabilities.

Here’s what she had to say:

NationSwell: Tell us a little bit about your journey in advocacy work and research — what is your personal connection to the Black disabled community? What inspires or motivates you — personally and professionally — to do this work?

Kiana Jackson, Director of Data and Research at New Disabled South: My journey in advocacy started with community organizing in rural Georgia, where I saw firsthand the health disparities and systemic inequities Black communities face. Over time, I became more involved in research, trying to uncover why these inequities persist and how we can tackle them at the roots. My personal connection to this work comes from my own experience as a Black disabled woman from the rural South, where I ran into everything from limited accessibility in schools to scarce resources for complex disabilities. Seeing how these barriers affect not just me but so many in my community drives me to keep going. What truly keeps me motivated is the incredible resilience I see among Black disabled people. Even when the deck is stacked against us, our community finds ways to create joy, support, and innovation. I want to help shift the conversation around disability away from merely “fixing” people or adding accommodations onto flawed systems, and instead push for broader, structural changes that allow us to thrive.

NationSwell: What is unique about the experiences of Black disabled folks living in the American South? Why is research so critically needed at this time?

Jackson: Black disabled people in the South occupy a very particular space, facing racial discrimination, ableism, and the unique challenges that come with living in a region that is often under-resourced. Legacy issues—like entrenched racism in institutions, lack of healthcare infrastructure, and inaccessible public spaces—combine to create more hurdles than what you might see elsewhere in the country. At the same time, the South has a legacy of resilience and activism that runs deep, with strong community networks supporting one another. Despite that legacy, Black disabled Southerners are often overlooked in national policy and research, which makes it harder to bring about meaningful policy reforms. If we don’t have accurate data and storytelling that center these experiences, we can’t demand the changes needed in healthcare, housing, or education. Focused research is crucial right now because it pushes back against harmful narratives and ensures our communities’ realities become part of the broader conversation on disability justice and equity.

NationSwell: What are New Disabled South’s existing advocacy efforts like for the Black community, and where are you most excited about expanding that advocacy work?

Jackson: We’re committed to intersectional disability justice, and that means ensuring Black disabled voices directly shape our policy and research agenda. Through our Black Disability Institute (BDI), we will conduct original research and connect with Black communities, making sure people’s lived experiences inform our work. For example, in our broader research initiatives, we’re investigating racial disparities in Home and Community-Based Services (HCBS) waitlists—vital supports that Black disabled Georgians often wait years to receive, even though the state has the means to address the backlog. We’re also examining how policing intersects with disability and race in the South. Our data shows Black disabled voters frequently report discrimination in encounters with law enforcement. By pinpointing where these problems occur, we can push for better training, alternative crisis response teams, and more accountability. Looking to the future, I’m eager to see the Black Disability Institute grow and take on more community-centered research in healthcare, criminal justice, and the economy. Our broader vision is a South where Black disabled folks have the resources and autonomy we deserve—and where our lived experiences are front and center in every advocacy effort. We view research as both a tool and a call to action. The data we collect does more than reveal problems; it drives our advocacy strategies and helps us collaborate effectively with state officials, healthcare providers, and fellow advocates. Through all of this, our guiding principle remains clear: The fight for disability justice in the South must uplift Black experiences, voices, and leadership every step of the way.

NationSwell: What are the Institute’s primary goals, and what is its theory of change?

Jackson: Black Disability Institute (BDI) operates as a think tank under New Disabled South’s Research Department, aiming to reshape how we talk about Black disability and ensure that research benefits the community. We focus on bridging gaps between researchers and Black disabled communities, building trust where it’s often been broken, and spotlighting lived experiences through studies and community outreach. Ultimately, we want more funding and attention directed to the challenges that keep Black disabled people—especially in the South—from having economic independence and quality care. Our theory of change is that real progress comes when rigorous research, grassroots engagement, and institutional partnerships come together. By keeping Black disabled voices at the heart of what we do, we can confront the systems that leave us out and create lasting policy change. In our first three years, we’re zeroing in on Poverty & Care, working with healthcare leaders, policymakers, and local organizers to give Black disabled Southerners a comprehensive network of support—from accessible housing to decent-paying jobs. Our hope is that by driving both research and advocacy, BDI can help build a future where Black disabled people are fully recognized, respected, and resourced.

NationSwell: Finally, what are some of the challenges you’re currently facing, and how can NationSwell’s community of changemakers help you with those challenges?

Jackson: One of our biggest hurdles is the lack of detailed data and targeted funding for Black disabled communities in the South. Too often, policy and research discussions don’t address—or even acknowledge—the multiple layers of racism and ableism we encounter. Changing this requires significant effort and resources. Another challenge lies in shifting the broader narrative: disability is still widely seen through the lens of “accommodation” rather than justice, and Black disabled people can get lost in both racial justice and disability advocacy spaces. NationSwell’s community can help by sharing resources, forging strategic partnerships, and amplifying our research so the experiences of Black disabled Southerners reach decision-makers. We also welcome support in reshaping the narrative—through storytelling, media, and campaigns that show the realities and resilience of Black disabled people. By joining forces, we can push for systemic changes that move us past “inclusion” and toward genuine equity and justice.