Carolyn Wheeler’s heart broke when she came across a book called Christmas in Purgatory on her mom’s bookshelf.
The book was a photographic essay on the conditions in large, state institutions in the Northeast for people with intellectual and developmental disabilities. It was first published in 1966. She later had a job in such an institution in the summer of 1972. Wheeler found the conditions tragic and abhorrent. Ever since, she’s been fighting to ensure that no one ever has to spend a Christmas in that purgatory or anything like it again.
These days, Wheeler works with HDI in a variety of capacities. She is involved in creating training and providing technical assistance for the staff in the Supports for Community Living and Michelle P waivers, dispelling misinformation around disability benefits and work, and connecting people with tools to help them navigate life.
When asked for a unifying theme around her work, she said, “It’s helping people to understand what resources are available, to help people think beyond the service system, how to have a good life. I think of the service system as a means to an end. It’s not an end in and of itself.”
She also noted that she works to ensure that the people with intellectual and developmental disabilities have unpaid relationships in their lives.
“I went to college in Washington, DC and worked for an organization where I learned about radical thinkers for the time,” she said. “That led to my going to graduate school at Syracuse University, which created some phenomenal learning opportunities.”
Then, in the 80s, she returned to Kentucky and started working with HDI.
Today, she’s seen some monumental changes in the field – and been directly involved in causing a few of those changes and writing some of the legislation that enacted them. In her view, there’s a lot of problems to address still, but we’ve come a very long way.
So what happens that makes monumental change like that possible?
“Your heart has to be broken,” she said. “I think it’s important you have to be part of a larger organization. There are organizations that formed in the fifties and sixties to help address many of the injustices. One needs to always learn. You have to do this in community.”
It’s also important, she said, to get to know the people on whose behalf you’re working. Wheeler has had multiple friends with intellectual and developmental disabilities over the years. When she talks about how people need friends in their corner who aren’t paid to be there, she speaks from the experience of having been that friend for several people.
Beyond work, Wheeler enjoys a good book and a good live performance. She’s been fortunate enough to see Miss Saigon at the Kennedy Center and has seen Hamilton twice.
Over her life, Wheeler feels fortunate to have made a career of work she loves with people who believe in it, and to have helped shepherd real change into the community.
“I’ve had a phenomenal, phenomenal work life through HDI,” she said. “I hope other people have that, whether it’s here or somewhere else, that you have people who are friends, but also colleagues that you journey with throughout your career.
Read Christmas in Purgatory here: