Nicole JeanBaptiste 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.

For current and, I’m guessing former OHMA students, deciding on a research topic can be a daunting task, one made even more complex by the many interests with which we enter the program.  These interests can range from Rastafarian art and culture to unconventional marriages to childbirth in the Black community. Those three might only be interests of my own, but I’ve made it through nearly half of Columbia’s year-long Oral History Master’s program, and have learned that most others in my cohort share the same sentiment when it comes to picking a research topic and actually sticking to it.  This is why former OHMA alum, Nicki Berger, could not have given her talk on her thesis work, which centered around stories from self-advocates with Down syndrome, at a more opportune time.   

From her November 13th talk, Oral History and Intellectual Disability: Navigating Authority, Authorship and Advocacy, I gathered that students should follow their passions when choosing a research topic for one’s thesis.  When I prefaced one of my questions to Nicki by stating my observation of her skillful ability to weave her personal interests into her academic work, she agreed.  Nicki says, “… My research [and] my personal life are inextricable.” This was demonstrated even further when I asked Nicki how, with a project that deals so heavily with matters concerning health and medicine, she managed to balance her more hardcore research on Down syndrome with the actual collection of oral history interviews.  She says,

“I think activity that fell under the category of research included things like going to my sons' doctors' appointment and… hearing how he was seen by the medical community, and talking to other parents. And so, there was the whole level of research that had to do with my own experience of what living with a child with Down syndrome is like. And then, research specifically related to my project came more in the form of trying to educate myself about disability rights more generally and…the historical and social context for the Disability Rights Movement..and trying to understand the historical trajectory that I was both parenting on, but also that my narrators were living through.”

Nicki’s thesis, the centerpiece of which is titled Nothing About Us Without Us and is a combination of photos, audio, video and text gathered from her oral history interviews with self-advocates with Down syndrome, was showcased on cowbird.com.  She explained that the most crucial element in choosing a platform upon which to present her work was consideration of her audience. She was “interested in the possibility of taking these interviews, these voices…and …bringing them to an audience that might not hear them otherwise.”   You can view Nicki’s thesis online.

Nicki continues to work on issues surrounding Intellectual Disability Rights.  Currently she works with an agency called Toward Independent Living and Learning (TILL).  There she piloted its Living Legacy Project, which documents, preserves and shares the family histories of longtime residential service clients at TILL. This seemed to Nicki as a good place where oral history could “really live” so she proposed an oral history project in which she’d work with several families to record their stories. 

In addition to her work with TILL’s Living Legacy Project, Nicki recently joined the team of A Fierce Kind of Love, a play written by Suli Holum and directed by David Bradley.  The play engages people with disabilities in the construction and representation of their own rich history, and introduces this history to new audiences.  In her role with this production she uses oral history to connect "citizen recorders" with individuals with intellectual disabilities living or working in segregated settings.  Learn more about the project. 

So, to my fellow OHMA-ites: use Nicki Berger’s success at identifying a research project that spoke to her personally and intellectually as a model for the possibilities of that thing you’re always thinking about, but aren’t sure anybody else would find as important as you do. 

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.