1. Narratives and the Creation of a Social Movement: The AIDS Community in New York Susan M. Chambré Baruch College, City University of New York Susan_Chambré@baruch.cuny.edu May 5, 2009

2. Central Themes in Social Movement Research Mobilization  Grievances  Resources  Social capital Culture  Ideology  Practices  Stories

3. Growing Interest in the Importance of Narratives and Stories Gary Alan Fine: a social movement is a “bundle of narratives” Francesca Polletta: narratives “endow events with the moral purpose, emotional telos, and engaging ambiguity that persuade others to participate.”

4. AIDS Community Organizational field ‘fighting AIDS’ Personal stories and illness narratives were central in mobilizing for collective action Tarrow: death as a unifying and mobilizing force

5. Methodology Triangulated research design 1988 – 2005 data collection 255 interviews 210 presentations 25 videos and oral history interviews Archival and printed information

6. Findings Support and support groups emerged quickly to help people ‘live’ with AIDS Narratives put a ‘face’ on AIDS and enlisted broader support Support groups were a locus for communal empowerment

7. Support groups emerged quickly Spillover from self help and 12 step traditions Shared their stories Overcame isolation and stigma Response to fear and uncertainty Developed a philosophy of ‘living with AIDS’

8. Narratives Put a ‘Face’ on AIDS PWAs told their stories to a broader audience Media appearances were important PWA Coalition Newsline broadened awareness of personal stories within the AIDS community

9. Support groups were a locus for communal empowerment The personal became political Individual empowerment contributed to communal empowerment

10. Money Save Lives Government inaction contributed to deaths Holocaust analogy predated ACT UP

11. Conclusions Historical precedents for AIDS narratives  TB  Polio  Cancer  Kidney disease Narratives are critical in creating a social movement culture Self help groups serve as mobilizing structures