Q&A with Evan Sweeney, disability advocate and Lurie Institute 2026 Carrie Buck Distinguished Fellow

Brandeis Stories

Q&A with Evan Sweeney, disability advocate and Lurie Institute 2026 Carrie Buck Distinguished Fellow

April 22, 2026

The Lurie Institute for Disability Policy at Brandeis will welcome writer and disability advocate Evan Sweeney to give the Carrie Buck Distinguished Fellowship keynote lecture later this month.

In his remarks, Sweeney, the 2026 Carrie Buck Distinguished Fellow, will challenge the "survival-only" paradigm surrounding disability and autonomy by centering pleasure as a fundamental human right in the virtual lecture, at 1 p.m. Tuesday, April 28. Register here. He will be joined by Rebecca Cokley, the U.S. Disability Rights program officer at the Ford Foundation, which funds the fellowship.

The fellowship is named for the 1927 U.S. Supreme Court decision in Buck v. Bell, which remains federal law and has never been overturned. The decision concerned the involuntary sterilization of Carrie Buck, a woman asserted to be "feeble minded." To honor Buck's memory and to take steps to rectify the injustice that she and thousands of other people in the United States had experienced, the Lurie Institute in 2023 established the Carrie Buck Distinguished Fellowship. The fellowship is intended to highlight activists, independent scholars, and community organizers with disabilities whose work draws national attention to systemic ableism in reproductive health policy.

In his lecture, Sweeney, a sex educator and founder of Cripping Up Sex, will explore systemic barriers that desexualize disabled bodies and the "radical act of reclaiming intimacy." Ahead of the lecture, he shared his thoughts on his role in disabled advocacy, common misconceptions about disability and sexuality, and capturing the stories of the disabled community.

Tell us a little bit about yourself and your background.

I'm a queer, disabled advocate currently based in Glendale, Calif. I live with cerebral palsy and use a manual wheelchair to get around. My life is shared with my cat, Romeo, and my new service dog in training, Sadie. Most of my background involves working at the intersection of disability and LGBTQ+ advocacy - I spent quite a bit of time at The Trevor Project before transitioning into my current fellowship and independent projects.

How did you develop your role as a sex educator in the disabled community?

It really grew out of necessity. For a long time, the "official" conversations around disability were very clinical or focused entirely on medical care. There wasn't much room for queer, disabled people to talk about desire, identity, or how to navigate intimacy with a body that works differently. I started leaning into that gap, using my own experiences and a "peer-to-peer" approach to help people realize that our bodies aren't just "problems to be solved" - they are capable of deep connection and joy.

Talk a bit more about centering pleasure as a fundamental human right vs. the "survival-only" paradigm.

A lot of disability advocacy is stuck in the "survival" phase-fighting for basic access, healthcare, and staying alive. While that's vital, it's a low bar for a human life. When we only talk about survival, we ignore the quality of that life.

By centering pleasure, we shift the narrative from "how do we get you through the day?" to "how do you thrive?" Pleasure is about autonomy; it's about the right to feel good in your own skin. It's a radical act for a disabled person to claim pleasure because society often tries to desexualize us or view our bodies only through the lens of medical intervention.

What is a common misconception about disability and sexuality?

The biggest one is definitely the "asexuality myth" - the idea that disabled people are either uninterested in sex, incapable of it, or that sex only "counts" if it looks a very specific, heteronormative way. People often assume that if you have high support needs or physical limitations, your sex life must be non-existent. In reality, disabled sexuality is incredibly creative, diverse, and often more communicative because we have to be so intentional about what feels good.

What does being named a 2026 Carrie Buck fellow mean to you?

It's an incredible honor, especially given the history of the name. Carrie Buck was a victim of the eugenics movement, so holding a fellowship in her name feels like a powerful way to reclaim bodily autonomy for the disabled community.

During my time as a fellow, my goal is to bridge the gap between academic theory and lived experience. I'm preparing a public lecture through the Lurie Institute, and I want to use that platform to push for a more nuanced understanding of how disabled people navigate the world - not as "inspirational" figures, but as people with complex desires and rights.

What is the Access Archive, and what do you want to accomplish with it?

The Access Archive is a video project I've been working on to document our history. So much of the disabled experience is oral history or lived experience that never gets recorded in traditional archives.

I want to capture the stories of disabled people in their own words - using whatever communication methods they prefer (I'm a big fan of using my letter board for this!). The goal is to create a lasting resource that proves we were here, we were active, and we were whole people. It's about building a legacy of accessibility and intersectional pride.