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| Act Up |
Act Up is perhaps the best-known example of an international grassroots organization that has managed to impact legislation, research and standards of medical treatment for HIV/AIDS, starting from the self-organization processes of those who were directly impacted by the virus. Founded in 1987 in New York within an association of LGBT activists, the first Act Up initiatives focused on staging direct actions and protests with high media impact, such as die-ins, where they staged mass deaths.
Alongside the innovative way of capturing media attention with creativity, there are at least two other aspects that make Act Up a very important example to help us think about care practices. The first has to do with the way in which the organization managed to scale up in a very short amount of time while staying committed to an open decision-making structure without leaders, where proposals and coordination were entrusted to an agile grouping of committees and assemblies able to make decisions democratically and autonomously.
Another innovative trait of Act Up was its commitment to self-education, which focused both on scientific expertise and on understanding the rules and bureaucracies of the health system. The organization was able to modify the protocols that regulate experimental therapies through their “Parallel Track” program, which enlarged the number of participants in therapeutic trials on a voluntary basis, insisting that the patients must have full informed control over the design and implementation of the experiments.
Note based on Rebelling with Care (WeMake, 2019)