Sean Swindler honored with Judith Heumann Disability Rights Advocacy Award

Sean Swindler was honored with the Judith Heumann Disability Rights Advocacy Award in a June 14 ceremony attended by family, friends and colleagues who shared personal stories of the many ways his work had impacted their lives and of others. 

Swindler, who is director of community program development and evaluation at the Kansas Center for Autism Research and Training and project manager at the Kansas University Center on Developmental Disabilities, has advanced disability rights and inclusion throughout his career at KU, in community roles and through his own personal advocacy. 

Professor Michelle Heffner Hayes shared Swindler’s contributions impacting her work at the KU Department of Theatre and Dance, helping make the department more inclusive.

She praised Swindler’s work instructing law enforcement on best practices for interacting with individuals with developmental disabilities and autism and guiding state officials on policy development in ways that improve the quality of life for people with disabilities and their families. 

“Sean has gone far beyond his professional role in shaping how we address barriers to full participation in our communities,” Hayes said. “I want to thank you. You are a change maker and a champion for disability rights.” 

Swindler started as a direct support professional working with adults with I/DD and then accepted a position as Advocacy Coordinator for The Arc of Douglas County. He credited his decision to pursue a master’s degree in special education to the support and encouragement of the then Executive Director Barb Bishop. 

“I've had the privilege of working with some amazing advocates that have taught me a lot,” he said. 

Among many other contributions, Swindler has worked for the Kansas Dept. of Aging and Disability Services and was the first full-time coodinator for SACK, the Self Advocate Coalition of Kansas. He has long served on the board of the ARC of Douglas County and currently serves as Board President. 

Swindler said his advocacy has grown in and outside of his professional roles, and it extends to his personal life, too. His son Issac was identified as autistic about six months after Swindler started working at KU in 2008, giving him an entirely new perspective on the career he’d chosen. 

“I've had this journey with Isaac along with my professional journey. And it's really changed a lot. I will tell you, it's very different advocating for a policy from an intellectual level.” 

The process of supporting the transition from childhood to adulthood is one example of how being a parent has informed his experience. Another is the shared frustration of navigating the system to obtain support for his son. 

"Given what I do in my background, if I am confused and can't figure out how to get through this system, what are other people feeling?” 

Swindler’s work has often meant traveling out of town evenings and weekends, and weekends and working with people in various parts of the state. He said he couldn’t have been able to achieve as much as he did without the partnership of his wife, Jaimie, a 25-year veteran of special education. Swindler said her experience has helped give him an important perspective. 

"I can talk to her about all of these things that she looked at, she has wonderful ideas and wonderful ways to have support,” he said. “I'm so appreciative of the support Jamie has given not just as a mom, but also as a colleague and as a friend.” 

From the University of Kansas Medical Center, Linda S. Heitzman-Powell, associate professor of pediatrics and a K-CART researcher, shared her perspective on Swindler's work and career.

“That’s your superpower,” she said, speaking to Swindler. “You have the ability to touch people, form relationships, maintain those relationships and connect people. ... I think everybody that you've touched would bend over backwards for you because I think you do that for them.” 

K-CART Director Matthew Mosconi said, “Sean is currently a leader at KCART in our research expansion that now includes: multiple federally funded (including NIH funded) studies of autism across the lifespan, studies of as genetic conditions associated with autism, such as our multiple studies of Fragile X. He has been pivotal in engaging with the autism and Fragile X communities, forming partnerships beyond just being a contact, but rather being a partner as these communities are involved in and help inform our work collaboratively.” 

The KU Faculty Staff Council for Disability Inclusion created the award to honor employees who embodied the leadership, passion, spirit and persistence of Judith Heumann, who was known for her lifetime of disability rights advocacy. She died on March 4, 2023. 

Swindler said he was humbled to be mentioned in the same space as the woman who is often referred to as the Mother of the Disability Rights Movement. 

“We’re here in honor of Judy Heumann, and so we aim to remember that,” Swindler said.