What surprised you the most?

Lieke van Heumen

“What surprised you the most?”

It was this simple question about my observations as a disability studies researcher that moved me. It made me reflect on my experiences as a qualitative researcher with people labeled intellectually disabled. For my dissertation I interviewed older people with intellectual disabilities about their life experiences.

As I became familiar with this population’s needs and prepared for my study, I also became familiar with the circumstances that have shaped many of their lives. Therefore it was unfortunately not surprising to me to discover that my participants had been the victims of physical, emotional and sexual abuse and violence. We know that children with disabilities are three to four times more likely to be abused or neglected than children without disabilities.

Talking about these experiences brought up many emotions for the participants, but also for me as the researcher. It took me several hours after each interview to process my feelings. As researchers we need to be aware of these emotions and document them. By reflecting on their source we can gain insight into how they impact or illuminate our work.

Answering the question about what surprised me most in my research made me better able to grasp the conflict I was feeling between my observations of the people I interviewed and the lives they lived. These did not align. I saw people with unique personalities, various interests, personal strengths and abilities, and resilience. It was the extent of their underdeveloped and unfulfilled potential that surprised me the most. The directions of their lives were severely impacted by a lack of opportunities to live and thrive in local communities, to be educated, hold meaningful work, or have a family.

Take William. William is a soft-spoken and friendly man. He is polite and somewhat shy and has a calm demeanor. He does not like when his surroundings are loud or chaotic. He enjoys drawing, playing his harmonica and eating potato salad but hates sauerkraut. William was born in Chicago during the Second World War. He did not have the opportunity to grow up with his family. At age nine he was admitted to Dixon state school in Dixon, Illinois. The ‘Dixon State School for the Feeble-Minded’ opened in 1918 and was located 100 miles west from Chicago. In 1970, the Chicago Sun Times published a series of articles by Jerome Watson and Jack Dykinga on the living conditions in the Lincoln and Dixon state schools in Illinois. Jack Dykinga won a Pulitzer Prize for his images of the neglected, naked individuals in these state schools. As a result the state enacted a number of reforms that lead to the closure of these institutions. William said the following about his experience at the Dixon State School: “God, I am glad I am out of that nasty place…. Oh. I don’t know what is going on about that Dixon. Oh, that is a tough life out there…. Oh, I used to cry a whole lot out there in Dixon.”

Betty is nearly seventy years old. She is very talkative and has an incredible memory. She remembers the names of all the children she used to play with back in the fifties. Betty grew up with her parents and her sister and attended special education classes at a local school. She always loved children and while she was in high school she worked a part-time job in a nursery where she assisted with child care. After she graduated high school she started working there full-time. After the director of the nursery school passed away a local college took over the nursery. Betty’s sister explained what happened next: “The college didn’t want anybody like Betty there. So they let her go. And that was very crushing for her. And for my parents.… I often think, I wonder, if they had any idea what they did. I don’t think so.” For the next several decades Betty lived at home with her parents without another job or daytime activities.

As disability studies researchers we uncover histories that we do not want to see repeated. How can these stories serve as fuel for us as we advocate with people with disabilities for social justice? How can we break patterns of social exclusion and battle structural forms of oppression? How can we be imaginative and look beyond taken-for-granted exclusionary practices?

I believe we all need to ask ourselves how we can be good allies to people with disabilities. What can each one of us do in our daily lives to promote inclusion for all? How can we teach each other the value of relationships with people who are different from ourselves? How can be we a family member, a friend, a support staff, a colleague or a neighbor that provides and supports opportunity to people with disabilities?

Lieke van Heumen holds a PhD in Disability Studies and works as a postdoctoral research associate at the University of Illinois at Chicago. Her research focuses on aging of individuals with intellectual and developmental disabilities. She applies a life course perspective to the experience of aging with disability. Her goal is to promote the development of effective supports and socially just policies so adults with disabilities and their families can age well within their communities.