Wow! How? In-your-face Expertise
Thirty-three years ago today, on September 5, 1991, activists unfurled a giant, inflatable condom over a U.S. Senator’s house. Don’t believe me? Watch a 30-second news clip or a 5-minute documentary about the action.
It was a splashy way to announce the formation of the Treatment Action Group (TAG), an offshoot of the AIDS Coalition to Unleash Power (ACT UP), and to draw attention to Senator Jesse Helms’s hateful statements and policy proposals related to the AIDS crisis. As Peter Staley, a TAG organizer, wrote: “One of the best tools an activist can use is humor. If you can get folks laughing at your target’s expense, you diminish his power.”
ACT UP, TAG, and other AIDS activists demanded – and won – seats at the negotiating table with policymakers, researchers, and funders. Crucially, some activists became experts in the science of their own disease. As Steven Epstein put it in his book, Impure Science:
Perhaps the most striking feature on the landscape of AIDS politics is the development of an “AIDS movement” that is more than just a “disease constituency” pressuring the government for more funding, but is in fact an alternative basis of expertise.
Other radical health movements have borrowed from the ACT UP and TAG playbooks when they felt shut out, left out, or ignored.
For example, the National Breast Cancer Coalition used similar in-your-face lobbying tactics to increase research funding. They also teach advocates how to engage in high-level scientific discussions. Patients who identified, named, and measured Long Covid more recently took up the mantle of building a movement based on expertise (with the overlay of public actions to draw attention to their plight). And psychedelic outlaws who live with cluster headache are pursuing citizen science because mainstream health care has failed them.
Where else have you seen patients, survivors, and caregivers not only lobbying for research funding, but also contributing to the research as experts in their own right? Please share in the comments.
Executive Director at Imerman Angels
6 个月What I love about this piece is the way you show how each health movement builds upon the playbook of their peers. We all have "in-your-face-expertise" on unique things, but learning the tactics and strategies on how to use the expertise is key!
Film Producer, COMPLICATED: Open Eye Pictures, Health Communicator, Marketing & Biz Dev Pro, Rare Mom, Speaker, Advocate, EHLERS DANLOS EDUCATOR, Pedi Pain/PTSD/Trauma Informed/Pharmacogenetics,The Do No Harm Project
6 个月Ehlers Danlos Syndrome and medicines understanding of the importance of rare disease is a perfect example of a patient led revolution in healthcare as patients and parents of patients partnered with researchers and then shared knowledge downstream with physicians and medical teams. This model has created major problems for patients as well and treatment for the comorbid conditions associated with connective tissue disease continue to be a bit of a "wild west."