A few weeks ago I was speaking to a group of people who work in Sexually Transmitted and Blood Borne Infection (STBBI) who were mostly HIV organization representatives with a smattering of healthcare professionals and a few from the HCV sphere. I was presenting in my role as a spokesperson for an organization about our work in HCV advocacy. Our work is often called “high level” which sounds a bit pretentious, but what it means is that we focus on policy change that impacts large numbers of people and thus the “high level” tag. Not a term I use, but nonetheless we are not engaged in direct service to individuals despite that we are made up of 56 organizations to include our own home organizations, that in many cases provide all sorts of direct services, from harm reduction to the full gamut.
Anger and Accusations
It is in this context that I want to talk about something that happened. I enjoy the Q&A that follows presentations the most and I try to set the stage for an interactive discussion after my own presentation. This was a good one with lots of questions and comments that followed. One in particular sticks with me.
The tone of the comment, definitely not a question, was angry and a little accusatory. I heard later that this made some people in the room uncomfortable. The comment was a kind of attack on the work we do and suggested it was not so relevant compared to the work done by the “grassroots” of hep C activism. The voice was shaking and filled with passion and frustration, and I looked directly at the person delivering the tirade-in their eyes never breaking eye contact.
I was not angered.
I was not intimidated.
I was not impressed, either.
But, there was some truth in their word. And, what it was that caught me was the passion and pure frustration in the words they spoke despite the tone and volume.
We Are All Fighting for the Same Community
At first, I was wondering why I was being attacked. Then it hit me. To them, I represented the establishment, or the elite, who were responsible for the injustices that their constituents faced with poverty and lack of services. The social determinants of health were a reality for the community they represented, and in their mind, I was part of the reason why. They spoke of the “grassroots” and held it over me like a sword to strike me and all I represented down. That part hurt and continues to cause me uneasiness.
I am not the elite or the establishment that keeps them down. It is enough to say that these are the very people that I try to serve most in my work. That is not to say that I do not endeavor to help all people living with or at risk for hep C, because I try to make the future better for all of us regardless of social or economic status. The people most affected by disease are those who have the least resources. Whether they are homeless or on some form of financial assistance they need our help, all our help. Whether we are part of any grassroots effort or part of something bigger we can do better and I am reminded each and every time I speak to someone who needs our help. No grudges over how I was attacked, I understand the frustration because I feel it too. The pace of change is very slow – too slow for all of us.