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Nothing About Us Without Us: A Thesis Collection.

Nothing About Us Without Us: 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 Cowbird 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, adding their rich and varied voices to the Cowbird chorus.

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 in this collection, connecting them to one another and to the broader Cowbird community, 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 platform on Cowbird, I hope to help others do the same.

My greatest hope, as a parent, as an oral historian, and as a partner in collaborative narration with my interviewees, is for this project to do justice to the voices of these self-advocates, in the service of the world they work toward: one where they are heard, and, in the words of David Egan, seen as “one of us, not one among us.”

Meet the Self-Advocates:

How it Worked:

With each of these self-advocates, I conducted life history interviews, at least once, and sometimes more than once. 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.

With further permission, full length interviews and transcripts will be submitted to the Regional Oral History Office at the University of California, Berkeley, for inclusion in the Disability Rights and Independent Living Movement archive. I will also submit a methodological paper providing context for and analysis of my process conducting and sharing life history interviews with self-advocates with Down syndrome to the Academic Commons at Columbia University. If you would like to know more about my process, please contact me here .

What's Next?

The stories in this collection are also in the Cowbird project of the same name. David Egan and I are collaborating further to invite individuals with Down syndrome to add their own stories to that collection. This summer we conducted a storytelling workshop with the Madison Area Down Syndrome Society in Madison, Wisconsin, and we have plans to conduct more workshops in the coming months. If you're interested in working with us to support individuals with Down syndrome in sharing their stories on Cowbird, we want to hear from you! Email us at david.and.nicki.cowbird @ gmail.com.

More Listening

I also have been conducting oral history interviews with parents of self-advocates with Down syndrome, editing excerpts from their interviews into a companion collection entitled About Us: Stories of Parenting and Down Syndrome. I'll be adding my own stories there, too. I hope with these stories to animate the historical trajectory I am parenting on, and document my own experience along the way.

Gratitude

Thank you so much. You, yes you - for reading, for listening, for sharing these stories. And thanks to so many particular people whose support has been crucial. First and absolutely foremost, thanks to the interviewees who shared so much with me, so openly. Also first and foremost (because I can do that), thanks to my J's, Jed, Jackson and Jonah, without whom I never would have started down this road. Thank you to Jon Colman, Sara Weir and Vanessa Quick of the National Down Syndrome Society for their early conversations with me, which were so helpful personally and as I began this work. I could not have done this project without their enthusiasm and support in connecting me with their wonderful network of self-advocates. I made a crucial pivot thanks to conversations with Sterling Lynk, who kept me focused, motivated, and asking the tough, important questions along the way. Thanks to the Egan family for your warmth and incomparable family dinners, and to the Levitz family for being so critically and empathically engaged. Thanks to Emily Perl Kingsley for animating the past so vividly and orienting me toward a hopeful future. I owe much to my peers and professors at Columbia, including my advisor Rachel Adams and her colleagues in the Future of Disability Studies Group, whom I had the privilege of learning from and thinking alongside as a graduate fellow last year. Mary Marshall Clark's support has always been so critical to my work, and Amy Starecheski's early enthusiasm for this project spurred me on in crucial ways, and kept me going. My peers in the Oral History Master of Arts program listened to me patiently and endured my early drafts. Marsha Hurst's Illness and Disability Narratives course in the Narrative Medicine program at Columbia was life-changing, and the frameworks I learned from Marsha for thinking about how stories of disability are told have greatly influenced my work on this project. Thanks to my former colleagues at StoryCorps for their sensitivity, cultural humility, and open-heart-and-mindedness as I shared some of my searching with them in Jonah's early months. And finally, thank you to the care team whose hands and hearts and voices are helping us support Jonah's growth and whose hands-on support has literally given me the time to do this work: Elaine, Alan, Ahmed, Dana, Rochel, Sorah Ruby, Reisy, and most especially Heather.

Recommended Reading:

Atkinson, Dorothy, and Fiona Williams. 'Know Me as I Am': An Anthology of Prose, Poetry and Art by People with Learning Difficulties. London: Hodder & Stoughton in Association with the Open University, 1990.

Atkinson, Dorothy. "Autobiography and Learning Disability." Oral History Talking and Writing 26.1 (Spring 1998): 73-80.

Atkinson, Dorothy, Richardson Malcolm, and Ramcharan Paul. "Narratives and People with Learning Disabilities." Ed. Goward Peter. Learning Disability: A Life Cycle Approach to Valuing People. Ed. Grant Gordon. New York, NY: Open UP: McGraw Hill Education, 2005. 7-27.

Bérubé, Michael. Life as We Know It. New York, NY: Vintage, 1996.

Booth, Tim, and Wendy Booth. "Sounds of Silence: Narrative Research with Inarticulate Subjects." Disability and Society 11.1 (2010): 55-70. 01 July 2010.

Charlton, James I. Nothing about Us without Us: Disability Oppression and Empowerment. Berkeley: University of California, 1998.

Couser, G. Thomas. Vulnerable Subjects: Ethics and Life Writing. Ithaca: Cornell UP, 2004.

Couser, G. Thomas. Signifying Bodies: Disability in Contemporary Life Writing. Ann Arbor: University of Michigan, 2009.

Goodley, Dan. Self-advocacy in the Lives of People with Learning Difficulties: The Politics of Resilience. Buckingham England: Open UP, 2000.

High, Stephen. "Telling Stories: A Reflection on Oral History and New Media." Oral History (Spring 2010): 101-12.

Hirsch, Karen. "Culture and Disability: The Role of Oral History." The Oral History Review Summer 22.1 (1995): 1-27.

Johnson, Kelley, Jan Walmsley, and Marie Wolfe. People with Intellectual Disabilities: Towards a Good Life? Bristol: Policy, 2010.

Nind, Melanie. Conducting Qualitative Research with People with Learning, Communication and Other Disabilities: Methodological Challenges. Review Paper. Southampton, UK: University of Southampton, 2008. Print. ESRC National Centre for Research Methods Review Paper.

Shopes, Linda. "Legal and Ethical Issues in Oral History." Ed. Lois E. Myers and Rebecca Sharpless. History of Oral History: Foundations and Methodology. Ed. Thomas L. Charlton. Plymouth, UK: AltaMira, 2007. 125-59.

Thompson, Paul. The Voice of the Past. New York, NY: Oxford UP, 2000.

Walmsley, Jan, and Kelley Johnson. Inclusive Research with People with Learning Disabilities: Past, Present, and Futures. London: J. Kingsley, 2003.

Walmsley, Jan. "Interviews with People with Disabilities." Ed. Alistair Thomson. The Oral History Reader. Ed. Robert Perks. New York, NY: Routledge, 2009. 184-97.

Walmsley, Jan, and Kelley Johnson with Marie Wolfe. People with Intellectual Disabilities: Towards a Good Life?Portland, OR: The Policy Press, 2010.

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