Friday, October 11, 2013

Self-Made Advocate/Activist

Earlier this week, I showed my Health Communication undergraduate course the documentary film How to Survive a Plague. It's a powerful film about HIV-positive men and the various self-made activists of the late 1980s and early 90s in the US who insisted that the nation pay attention to AIDS as a national health crisis.  It's about self-advocacy, alliances, powerful rhetoric, iconic staged protests and self-made scientists.  My students were mostly stunned to learn of the history of HIV as a health issue prior to the development of drug therapies that slowed the progression of the disease in 1994.  I was working in New Hampshire in 1992 at an AIDS service organization and trying to help the community deal with many gay men coming home from Boston and New York to die. Needless to say, it was heady times. Watching How to Survive a Plague
brought that time back to me, when I was much younger and much more hopeful that with a little bit of activism, the world really would be a much nicer place during my lifetime. I imagined advocacy and activism as something one did and achieved--as if on a linear trajectory. Boom. Done. HIV/AIDS cured. Discrimination ended. Onto the next project. But humans don't behave that way, and as history shows us, we repeat our mistakes again and again. We treat new diseases as plagues when we don't understand them. Equality is never achieved entirely, it's something struggled for and sometimes it is won for a little bit. 

But more importantly, what this documentary got me thinking about is how for years, I have been an advocate for patients and people with disabilities and those living on the margins.  Maybe that is what people mean when they say my daughter is lucky to have me as a parent.  I was already primed to fight like hell for her.  I was not afraid to ask questions and I have no illusions that there is an Oz living behind the curtain fabricating some conspiracy to keep gene therapies from curing my daughter's rare disease.  I am angry that while people are dying of rare diseases and infections, people's ideologies can literally put research and science to a halt.

According to the Global Genes Project:
"One area where the devastating effects of the government shutdown aren’t getting much public attention is basic biomedical research. What’s happening to the thousands of researchers and billions of dollars dedicated to understanding human disease and development? This reporter talked to a government biomedical scientist about the shutdown’s effect:
 http://www.wired.com/wiredscience/2013/10/government-shutdown-affects-biomedical-research/

The more things change, the more they stay the same.  And somehow, I keep on advocating, and trying to be an activist in my little ways. Keep on fighting the good fight people!   

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When Kirsten isn’t teaching Health Communication at the State University of New York, she tries to be a good advocate for the good of humanity, the environment and all living creatures, but spends a lot of time just craving a good cocktail.  She is also the mother of two awesome seven year old girls and she loves living in Vermont.

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