Margaret Janse van Rensburg

Good morning, and thank you for the opportunity to speak today. My name is Margaret Janse van Rensburg, and I am a faculty member at the University of South Carolina College of Social Work.

I want to talk about how research priorities are set, and who gets to shape them.

Research plays a significant role in determining which issues receive funding, which programs are developed, and which policies are supported. It influences how autism is understood in schools, healthcare, and community services.

But historically, research has not always meaningfully included the perspectives of people with disabilities and their communities of care in setting those priorities.

I came into research because I was a research participant myself. I often felt that I was excluded from important decisions about what questions were asked in research, and that the findings were not shared with me after the research was completed.

As a researcher, I see it as my responsibility to address those past harms by redistributing decision-making power, centering the voices of people with disabilities and their communities of care, and ensuring that research processes and findings are accountable to those most affected.

Many of us know the phrase, “Nothing about us, without us.” That principle applies not only to policy and services, but also to research.

One approach is a community of inquiry: a structured group where people with lived experience, family members, advocates, professionals, and researchers come together to discuss what questions are most important to study, how research should be conducted, and what the findings mean.

It is not a symbolic advisory board. It is not a one-time consultation. It is an ongoing space for dialogue, reflection, and shared priority setting.

The purpose is simple: to ensure that research questions reflect real concerns, real barriers, and real goals identified by the community itself.

People with disabilities and their advocates have the right to help shape research that affects their lives. This is not only an ethical position. It strengthens the relevance and quality of the research itself.

Research findings should also be shared in plain language. If results cannot be understood by the people who contributed their time and experiences, then the work is incomplete. Accessible communication is part of accountability.

Collaboration among advocates, families, researchers, and policymakers can also improve the connection between research priorities and advocacy priorities.

In South Carolina, we have an opportunity to build a community of inquiry focused on autism and neurodivergence. The goal would be to create a structured space where community members can help guide future research directions and identify the issues that deserve attention.

Disability advocacy is about leadership in action. Ensuring that research reflects the priorities of people with lived experience is one practical way to extend advocacy into the systems that shape long-term policy decisions.