Sara Karon: Dedicated to Helping People with Disabilities

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Sara Karon grew up in St. Paul, Minnesota, the child of a physician and a speech pathologist. She planned on following in her father’s footsteps and becoming a physician when she headed off to college at the University of Minnesota. But after two years, in search of new challenges, she transferred to Bryn Mawr College in Pennsylvania where she became a psychology major.

Her new major required a research project. Karon and other students worked with the local police department to test the malleability of memory. They showed the officers a movie of a car accident and then came back later to ask them about their memories of it. “We wanted to see how much we could impact that by planting suggestions,” she says. “We would ask something like, ‘What about the blue car?’ when it really had been a green car.” Karon realized she loved research and decided to pursue a master’s degree in public health at Harvard University.

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Early on after she arrived in Boston, Karon met Catherine Odette, a disability rights activist who would go on to be a co-founder of the first ever Disability Pride celebration. The two fell in love, and it changed Karon’s life and outlook. “Growing up, I had the same attitudes that most people have about people with disabilities: They’re limited, they’re less than, they’re to be pitied,” she says. “But it’s not the person that is ‘less than.’ It’s the systems that are creating barriers. That really informs all my work. It’s not something I study. It’s something I live.” Karon went to work as a researcher at nearby Brandeis University and got her PhD there in 1991. After graduating, the couple moved to Madison, where Karon was hired as a research scientist at the University of Wisconsin’s Center for Health Systems Research and Analysis.

Karon spent 22 years at the university and became known as an expert in quality-of-life measures and studies evaluating access to long-term services for older adults and people with disabilities. “Having a disability doesn’t change your desire to have the life you want,” Karon says. “It’s not enough to provide just for someone’s physical and medical needs. It’s about quality of life. Where do they want to live? Who do they want to socialize with? Do they want to have a job?”

Over the years, Karon has worked on developing quality measures for the federal government, including one set of quality measures for people with developmental disabilities living in group homes. For the State of Wisconsin, she developed a system of person-centered quality-of-life measures for people with disabilities known by its acronym PEONIES (Personal Experience Outcomes Integrated Interview and Evaluation System). In 2013, Karon was recruited by RTI International, a nonprofit research institute headquartered in North Carolina that is dedicated to improving life through science-based solutions. There, Karon has continued her work, including leading a project at the Center for Rehabilitation Outcomes Research to create new quality-of-life measures for people who use home- and community-based services. (see related story)

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“Sara is one of the most accepting people on the planet. It’s part of her inclusive, nonjudgmental way of working with people,” says RTI colleague and friend Edie Walsh who has known her for decades. “One of her absolute strengths is how thoughtful she is. Sara takes the time to listen and include different viewpoints and experience. She wants to really hear things, absorb and understand them. Then she figures out how things fit together.”

When Karon isn’t working, she spends some of her time sewing. It’s a hobby she took up after Odette passed away in 2012. Before her death, Odette had wanted to make a T-shirt quilt from the shirts of a friend who had died. Karon took a sewing class so that she could make a quilt from some of Odette’s T-shirts, while the widow of that friend took on the work that Odette had not been able to finish. The class helped Karon work through her grief. “It turned out the class was social, creative and fun. So, I’ve continued sewing,” she says. “I really enjoy it.”