Narratives and the Creation of a Social Movement: The AIDS Community in New York

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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_at_baruch.cuny.edu
• May 5, 2009

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Central Themes in Social Movement Research

• Mobilization
• Grievances
• Resources
• Social capital
• Culture
• Ideology
• Practices
• Stories

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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

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Methodology

• Triangulated research design
• 1988 2005 data collection
• 255 interviews
• 210 presentations
• 25 videos and oral history interviews
• Archival and printed information

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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

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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

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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

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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

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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