Unleashing power: Pathways to inclusion and representation in U.S. AIDS activist organisations

The thesis proposes a theory for the development of substantive representation among social movement organisations (SMOs). Substantive representation (SR) is the extent to which political institutions advance the policy interests of their constituents, in particular the most disenfranchised. Despite their noble proclamations, institutions of representative democracy often fail to advance the interests of groups who have been ignored and absent at the proverbial table. The thesis establishes a causal process to explain the divergence in SR outcomes among informal SMOs, or all-volunteer groups that disavow formal hierarchy in favour of egalitarian modes of decision-making. It utilises a case study of the AIDS Coalition to Unleash Power (ACT UP), an umbrella organisation dedicated to ending the HIV/AIDS crisis in the United States and worldwide. It explains an anomalous story of SR attainment through the ACT UP Philadelphia chapter, compared to sister groups in New York City and Boston. The analysis draws from 92 semi-structured interviews, 13 months of participant observation, periodical review, and archival databases. ACT UP Philadelphia translated common SMO intentions of inclusivity into the uncommon rituals of practice. It forged a deliberate pipeline to invest not only in the presence but also the power of disenfranchised people with HIV, people too dark and poor to interest counterpart groups in other cities. Through an analytic retelling of ACT UP’s history, the thesis argues that the fulfilment of SR depends on the ability of SMOs to appeal to member self-interest. Critically, SMOs can offer material incentives and nurture feelings of debt and obligation: causal steps to recruitment and sustainability of a heterogeneous membership. In building a crucial if contentious core of dissimilar people and partnerships, SMOs can unleash an oft-unrealised power for collective action and SR, by and for disenfranchised peoples who had thought change to be impossible.