About the Project
Stories from Self-Advocates with Down Syndrome
A multimedia oral history thesis for the Oral History Master of Arts program at Columbia University.
From September 2012 through September 2013, I conducted twelve life history interviews with self-advocates who have Down syndrome for my thesis in the Oral History Master of Arts program at Columbia University. The purpose of the interviews was to provide these individuals with an opportunity to share their life experiences and reflect on their role in advocating for themselves and others with disabilities. The aim of this collection*, which constitutes my thesis, is to share those experiences and reflections with an audience that may not otherwise hear the voices of individuals with Down syndrome. By serving as a conduit, curator, and a collaborative narrator, I hope to present these voices in such a way that combats stigma with dignity, challenges the myth of dependence with stories of agency, and showcases the diversity of perspectives and experiences of individuals with Down syndrome.
Nicki Pombier, Jonah, and David Egan in Madison, Wisconsin, where David, Nicki and Claire Bible presented at the Oral History Association Annual Meeting in October 2014.
Too often and for too long, individuals with intellectual disabilities have gone unheard or misheard, have been underrepresented or misrepresented. By conducting, preserving and sharing life history interviews with self-advocates with Down syndrome, I hope to play a role in bringing their individual voices to light, in their own words. By presenting them on this website, I hope to redraw connections across borders that can keep individuals with Down syndrome separate, breaking down some of the walls David Egan describes in this story.
Finally, this is work I undertake in the hope of contributing to the disability rights movement from which I take my title: “Nothing About Us Without Us” is a slogan of that movement. This is also work that has, for me, a personal stake. When my second child, Jonah, was born in March of 2012, we found out that he has Down syndrome. Once I moved past the shock of his diagnosis, I was shocked, saddened, and outraged by the prejudicial assumptions I'd had about people with Down syndrome, without even realizing it. With this thesis I confronted, challenged and expanded my own limited views, and with this website, I hope to help others do the same.
*This collection was originally published in September 2013 on the storytelling platform Cowbird, viewable at this link. In Spring 2020, this new website was created as a more stable home for the project. Website designed by Planthouse Studio.
About the Process
With each of these self-advocates, I conducted one or more oral history interviews. After the interview, interviewees reviewed the audio and decided whether and what to release for my use in my thesis. In consultation with each interviewee, I edited excerpts from the interviews, shared them with interviewees for review, feedback, approval or rejection. All of the stories you read and listen to in this collection have been reviewed and approved by interviewees. Some were specifically selected by interviewees, and others were revised or expanded at the direction of interviewees.
Nicki Pombier and Sara Wolff New York City, Summer 2016
Learn More
If you would like to know more about this project or my process, please contact me to ask questions, share feedback, request access to full interview materials (subject to permission from the self-advocates) or read the methodological paper I submitted with my graduate thesis. Additionally, I wrote at length about this work in, “A Different Story: Narrative Allyship Across Ability,” in Research in Social Sciences and Disability: Volume 12, Fall 2020, Emerald Publishing.
As an oral historian, it’s important to me to be clear that the stories on this website are edited excerpts from long form life history interviews. Full interviews are available by request, and will be shared with those with relevant research, advocacy or other interests, with permission from self-advocates. If you are interested in accessing the full length interviews in audio or transcript form, please contact me and tell me more about your interest, and which narrator(s)’ interviews you would like to access.
About Me
I am an oral historian, writer, educator and dramaturg. My work in oral history engages the arts, disability justice and social change, with a particular focus on how to be a narrative ally, collaborating across ability. My experience working with the self-advocates whose stories are included here was foundational to my practice, which I describe at length in the article, “A Different Story: Narrative Allyship across Ability,” in Disability Alliances and Allies (Research in Social Science and Disability, Vol. 12).
I teach at the College of Performing Arts at The New School and in the Oral History Master of Arts Program at Columbia University. More about my work can be found here.
As an oral historian, I believe people are the authors of their own stories; that accounts of the self say something important about history; and that working as a steward and co-author of others’ stories is ethically and methodologically complex. I work to guide and ground my practice in participatory research practices and cultural humility, and my work has been expanded through my encounters and relationships with people with intellectual disabilities and my education in our shared history.
Me with my son, Jonah, May 2012
Working at the intersection of oral history, disability, arts and social change, I have co-created and co-curated multimedia exhibits online and in public spaces, and designed and produced educational and experimental multimedia works. I am currently working with Temple University’s Institute on Disabilities on “Reclaiming the Past, Constructing Our Future: A Collaborative Exploration of the Pennhurst Archive,” which will culminate in a public installation in 2023.
In 2018, I was a planner and Artist Resident for Discovering Selinsgrove, a public history pilot using an arts- and oral history-based approach to document first-person experiences of institutionalization, run by The Institute on Disabilities at Temple University and funded by the Pew Center for Arts and Heritage. From 2014-2015, I worked on A Fierce Kind of Love, The Institute on Disabilities at Temple’s multifaceted arts-based project on the intellectual disability rights movement in Pennsylvania, co-curating content for a multimedia exhibit online and in the rotunda of the Pennsylvania State Capitol and Philadelphia’s City Hall (Here. Stories from Selinsgrove Center and KenCrest Services).
Nicki at Selinsgrove Center, Selinsgrove, PA. Photo by JJ Tiziou
In 2015, I created An Accidental Documentary, an experimental film drawing on personal and archival oral histories to teach a history of intellectual disability for Oral History Summer School in Hudson, New York. From 2013-2014, I designed and produced the TILL Living Legacy Project, an educational film designed to engage human services staff in rethinking the complexity and humanity of people with intellectual disabilities, which won the 2015 Innovation Award from the Massachusetts Council of Human Service Providers. In 2015, I expanded the Living Legacy Project to train human services staff to conduct their own interviews with families of the individuals they work with. In 2013, I published this online multimedia collection of stories from self-advocates with Down syndrome. Prior to my independent work at the intersection of oral history and disability, I led several community engagement efforts at the national nonprofit organization, StoryCorps, including the National Teachers Initiative.
I have a Master of Arts in Oral History from Columbia University (2013), a Master of Fine Arts in Writing from Sarah Lawrence College (2009), and a Bachelor of Science in the Foreign Service from Georgetown University (2001).