When writer and oral historian Nicki Pombier Berger learned that her son Jonah was born with Down syndrome it opened up a whole new world for her. She soon realized that before Jonah she had never met anyone with Down syndrome or even had a meaningful encounter with anyone with an intellectual disability.
At the time, she was in graduate school at Columbia, and decided to use her education to navigate this new world. In September 2012 Nicki began interviewing adults with Down syndrome who had successfully advocated for themselves and on behalf of others. As the number of interviews grew she named the project Nothing About Us Without Us and began sharing the interviews on Cowbird, an online storytelling platform that allows people to post stories using text, photos, and sound.
The Recollective: What inspired you to document these stories?
Nicki: My decision to focus on the stories of self-advocates reflected both my own driving curiosity about what it means to live with Down syndrome, and my sense from a few pivotal conversations that voices of people with Down syndrome weren’t necessarily being heard, even at times by those who are advocating for them. While I began with a set of research questions related more specifically to how self-advocates viewed their own roles in the advocacy landscape, my project evolved as I developed relationships with my interviewees and better understood some of their desires to speak and be heard for who they are: in the words of interviewee David Egan, to be seen as “one of us, not one among us.”
In creating an editorial product as the centerpiece of my thesis, I wanted to connect the self-advocates with an audience who might not encounter anyone with Down syndrome otherwise. In my interview and editorial process, I worked to leverage the tools and ethics of oral history in the service of self-representation for my interviewees, working to show their agency in their own lives and the lives of others. I confronted, challenged and expanded my own limited views, and in making my thesis public, I hoped to help others do the same.
The Recollective: What inspired the name of this project?
Nicki: I first heard the phrase “Nothing About Us Without Us” from one of my interviewees, John Anton, a self-advocate from Massachusetts. In our interview, John told me about his efforts over the years to ensure that he has a say in decisions about his own life – where he lives, what kinds of work he does, what goals he wants to pursue, and so on. “Nothing About Us Without Us,” a slogan of the disability rights movement, means that no such decisions – at the policy or individual level – should be made without the full participation of the people they impact. I adopted this slogan as the title for my thesis in consultation with another interviewee, David Egan, whose perspectives on media representation of people with intellectual disabilities were influential in my decision to take an editorial approach with my thesis, rather than simply writing an academic paper.
The Recollective: How did you find your interview subjects?
Nicki: Once I had a focus – self-advocates with Down syndrome – my outreach process
pretty much followed my relationships and my geography. When I first decided to do my oral history thesis on Down syndrome, I met with Jon Colman, President of the National Down Syndrome Society (NDSS), who helped orient me to the landscape of advocacy and offered his support as my ideas for using oral history to explore Down syndrome evolved. When I decided to focus on self-advocates,
Jon and his colleagues, Sara Hart Weir and Vanessa Quick, connected me with self-advocates in their network who lived in driving range for me: Virginia, Pennsylvania, Massachusetts, and New York. I interviewed Claire Bible in Madison, Wisconsin, my hometown, whom I met through another NDSS contact, Sterling Lynk, Executive Director of the Madison Area Down Syndrome Society (MADSS).
There is no question that a focus on self-advocates – individuals who speak up and speak out for themselves and others – leaves out many individuals with Down syndrome. A question I continue to explore is how to support autobiographical storytelling with individuals for whom an oral narration may not be the best way to “tell” their story. Noelle McCormack, an oral historian in the UK, is doing work I admire on that front, and the anthology edited by Dorothy Atkinson and Fiona Williams, Know Me As I Am, is so rich, thorough, and thoughtfully compiled, it’s a real standard-bearer.
The Recollective: The stories really vary in medium, style and subject matter. What informed those choices and what is the common thread you hope emerges from all the stories now that they are collected?
Nicki: I’m glad you’re asking this question – it means I succeeded! As I moved from interview collection into the editorial process, I knew I wanted to create a final product that would present stories reflective of the diversity and individuality of the self-advocates I interviewed. I also wanted to reach an audience who might not otherwise encounter individuals with Down syndrome.
Since I wanted to reach a general public, Cowbird was a fantastic platform, with its built-in broad ranging audience, its culture of curiosity and empathy, and its tools for connecting stories to one another on themes. But rather than starting with a sense of particular themes or topics I wanted to illustrate and looking for excerpts to do so, I went back to my interviews and listened for what I thought came through as most important to the interviewee, editing excerpts accordingly. I tried to edit in such a way that showed the interviewee as expert authors of their own experiences, endeavoring to communicate a concept or perspective or memory to me. Leaving myself as an interviewer in some of these excerpts is one way I did so.
But I wanted to make sure that Nothing About Us Without Us was more than just a nod to the disability rights movement – I wanted it to infuse the project. While I began editing by interpreting what I thought was important to each interviewee, I built in a review process that gave them a say in what I shared, and how. At the time of my interviews, I wasn’t yet sure what that final product would be, and while interviewees signed release forms giving me permission to use their interviews in my thesis, once I decided that the centerpiece would be online, I wanted interviewees to decide whether or not they wanted their stories “out there” in this way. I went through a second and more specific review and release
process, which informed my editorial options and choices. For instance, Sara Wolff restricted my use of her interview audio, but gave me permission to use transcripts, which is why her stories appear as text. She and other interviewees provided editorial input before I posted their stories to the collection, adding, deleting, combining or suggesting stories, and the resulting collection does, I believe, reflect a collaborative effort between myself and my interviewees.
The Recollective: Will the project continue?
Nicki: Yes. David Egan, took a particular interest in the project, reaching out to me after our initial interview to ask if he could get more involved. Another great thing about Cowbird as a platform is that others can add their own stories to shared projects. David and I have conducted two workshops to introduce the project to others, and encourage them to add their own stories. We are also hoping to interview other individuals with Down syndrome together.
The Recollective: What will become of the stories now that they have been collected?
Nicki: I am currently processing the full interview materials for submission to the Regional Oral History Office (ROHO) at the University of California, Berkeley, for inclusion in the Disability Rights and Independent Living Movement collection. There the interviews will be preserved and available in full – audio and transcripts – to scholars, advocates, and, who knows, maybe another new parent looking to broaden their own view or understanding of what’s possible for (and from) people with Down syndrome.
To learn more about this project and find out how you or someone you know can participate go to http://cowbird.com/project/nothing-about-us-without-us/introduction/