I've been silent for awhile now. The silence has been a lack of inspiration and feeling like I had nothing to contribute to the conversation. Well, last week I went to USCA in San Diego for the first time in a very long time and got a wealth of information and inspiration. Now I struggle with separating it all out to make it useful for me and others as it sits jumbled in my head. But here we go.
I work in HIV research and despite the hype that it is meaningful work; guess what - there are days I don't see the meaning. There are days I don't see HIV. I don't see where it all fits and I'm stuck asking myself why am I here? Why am I doing THIS right now? Not the research but this... The argument that community voices need to be included in the process, not rubber stamped, not tokenized to folk who supposedly understand that, but when the grant comes due, the paper needs to be written, and the possibility of money on the table, there is posturing for position and allocation of pie pieces with no signs of a community voice or share to be had.
Why am I doing THIS right now? Not the research but this... This report that requires justification for the funding we receive. How do I write a compelling story that shows the true value of community engagement when the report asks for the number of people enrolled in the study and nothing about how and what had to occur to get to that number? Why am I looking at human capital as capital and trying to put a dollar amount on what the right thing to do is? In my head I get trying to make sound business decisions. In my home I get budgeting and figuring out how to make a dollar stretch. But as I sit at the table in planning body meetings, when the topic of allocation of dollars and cost/benefit analysis come up, the people around the table, me included, cringe because we never quite know that those in positions higher than our own look at those unquantifiable things that you know need to happen if said analyses is to really have value.
Why am I doing THIS right now? Not the research but this...
My answer goes back to me being 10 years old and seeing children being denied access to school because of their HIV serostatus - and me being outraged because that was my favorite place to be and I didn't get it. My answer goes back to high school biology with Dr. Mysing-Gubala; for extra credit I had an openly gay HIV-positive man speak to my fellow students about his struggle and his triumph. My answer goes back to moving to Philadelphia and working for a dynamic group, YOACAP, and seeing the lives of the young people we touched as we provided sexual health education and more and they return to say how it was a meaningful experience. My answer goes back to the community advisory board I work with now, that reminds me to fill out the report but also document their struggle, their purpose to be the bridge between the HIV researcher and the community.
My answer goes back to the knowledge that my voice and the community voice is more powerful than fear!