Nicki Berger: Listening to the life stories of disabilities

Dong Kue Lee reflects on Nicki Pombier Berger's workshop, which discussed the work she did for her OHMA thesis, a multimedia collection of stories from self-advocates with Down syndrome.  This talk took place on Thursday, November 13, 2014.

There are relatively few life stories or autobiographies provided by individuals with learning disabilities. Nicki Berger’s thesis presents autobiographical oral histories illustrating a variety of challenges and mysteries faced by self-advocates with Down syndrome. Her interviewees’ stories are not merely personal and concerned solely with their own private lives. Rather, they also consciously provide a critical sense of culture and society in various ways.

When we refer to people with disabilities, it too often seems like we mean a homogeneous group. We may talk about them as if they don’t have any personal identities or characteristics. But when I listened to the voice of Claire Bible, one of Nicki’s interviewees, I was quite impressed. Her excitement when she moved into her first dorm at Edgewood College and her agony while seeking her future path were similar to my experiences in college life. Maybe everybody encounters similar amusements and troubles in life. What I was really surprised by is the way Claire stood up to the challenging problems. She did not remain bound by others’ expectations and instead chose the best for herself. She really wanted to make her life successful.

Claire is a writer, college student, and self-advocate with Down syndrome living in Madison, Wisconsin. She describes how her experiences in college life awakened her as an advocate. You can listen to her voice and other voices of people who were interviewed in Nicki Berger’s dynamic thesis collection, Nothing about Us without Us.

In our pre-lecture conversation with Nicki, one student asked about Nicki’s assumptions regarding how it might be difficult to talk to a person with Down syndrome and how the assumptions have changed over time. This question and her answer are important to people who interview those with disabilities. When Nicki spoke to her first interviewee, she had no concrete assumptions. She was nervous because she had never met someone with Down syndrome before. It was also very hard for her because her interviewee had sleep apnea and kept falling asleep.  But Nicki said,

That was a moment in the interview when I felt so moved and I was like, “He is really telling me something profound here that he feels--” And it’s embodied, and it’s emotional, and it’s deep, and my tools are so insufficient for recording it because all I have is this little audio recorder.

Thus, the stories are all profound and powerful to the interviewer herself and to the audience. Listening to the life stories of people with disabilities gives important new perspectives for the study of our culture and society. Their diverse and informative narratives help us understand a hidden part of society and encourage us to expand our minds and increase the space in our souls.

Columbia University’s Oral History Master of Arts Program and the Program in Narrative Medicine have partnered this year to present a workshop series open to the public on the intersections of oral history, health, and medicine. Join us next time.