When I got back from the 10th Conference on Retroviruses and Opportunistic Infections in February, my friend and colleague John Bell asked me, "So how did it go?" I told him it was great, but that I had understood less than half of the information presented at the conference. He looked at me, thought for a second, and then gave me an approving nod and thumbs up. This wasn't a "Great job! The glass is half full" type of nod and thumbs up; this was, "Thank God. The glass is half empty. Now stay there."
John's nod and thumbs up is about accountability -- what information do you need to learn, who is the information for, and how does it need to be presented? John and I teach a treatment education and activism class called TEACH Outside for people who have recently been released from prison. Most of the class members found out their HIV status while in prison. They were released with no support systems and the threat that they were going right back inside if they couldn't figure out how to be okay. The TEACH Outside curriculum is basic -- you can live healthy with HIV, services are available to support you, activism has put all of this in place, and you can be an advocate for yourself and your communities. We don't ask people to lock in on the workings of antivirals or the ins and outs of metabolic complications. We ask them to take the first step. If you overload people, you've lost them, and we can't afford to lose anyone.
When I applied for a community scholarship to attend the conference, I didn't know what I was getting myself into. I hadn't been to a scientific meeting like this before. Most of what I know I've learned from treatment activists. So I left for Boston with high ambitions of returning to Philadelphia with enough information to update the TEACH Outside curriculum and create a new presentation on HIV/hepatitis C co-infection.
From my first hour in Boston on Monday, it was obvious that I was in over my head. People were bustling around, intensely discussing the legitimacy of so and so's research on this and that, and using more acronyms and shorthand than I had ever heard from my activists friends when referring to the alphabet soup of activist organizations. Looking through the conference schedule didn't offer much reassurance. I gave up trying to figure out the complicated scientific titles of the abstracts and looked for sessions that matched my own interests as an activist and educator.
I talked to one of my activist friends that night about how to approach the conference. She said that most of the information is either "basic science" or "clinical." On Tuesday, I realized that "basic science" isn't basic at all; it refers to all the abstracts whose titles I couldn't understand. So after my first "it must be smart, because I can't understand what's being said" session, I headed off to the next session with a friend who helped me follow the presentations by explaining the scientific jargon.
Don't lock in. In TEACH Outside, we tell people, "Don't lock in on the information. You'll always be able to go back to it. For now, just listen, and don't worry if you're overwhelmed. It will start to make sense if you give yourself time."
Tuesday evening, I made two promises to myself. First, I was going to sit through sessions, even when I didn't understand what was being said. Second, I wasn't going to take notes; I was only going to write down terms I didn't understand and look them up later.
Make the information your own. At the start of each TEACH Outside class, most of the members aren't sure how they're going to make it through the class. They don't have a place to put the information. By the end of the class, people still haven't mastered all of the information, but they have created a place to put the information; and they have the tools and resources to make that information their own.
Wednesday night, I went to a meeting the AIDS Treatment Activists Coalition (ATAC) folks were having on T-20 -- side effects, pricing, expanded access, Phase IV trials, the whole nine-yards. Up until this point, I had been struggling to make the connection between the information being presented in the conference sessions and my work. Since becoming an AIDS activist, I've focused mostly on treatment access issues -- international trade regulations that stand in the way of HIV medication access throughout the world, and prison health care providers who deny necessary HIV treatment because it cuts into profit margins. I knew about emerging treatment information only in so far as it affected what we were demanding for international or in-prison treatment access. The ATAC meeting helped me connect the dots between emerging HIV scientific research and my activism. Thursday and Friday I went to the conference sessions with a clear focus: as we expand our understanding of HIV and explore new treatment options, treatment activists need to push the questions: (1) how effective is this? (2) what are the real side effects? (3) what is not being said? and (4) who will be able to access this? For the first time that week, I wasn't struggling to follow every detail of the presentations; I was trying to figure out what was being left out.
Take action. In TEACH Outside, we talk about how all of the HIV services and medications now available were put in place by activism -- people coming together to force those in power to do what is right. We don't ask people to stand up by themselves and fight for systemic change; we ask them to join us.
While I was overwhelmed for most of the conference, the experience was truly inspiring. I spent the conference with self-taught treatment activists, who told me about their first Retrovirus Conference and how hard it was when they first got involved. They told me over and over how important it is to have new treatment activists involved, and that it's the job of "old heads" to help new folks navigate through the information overload. Still reading and reading, but now I have a solid group of people I can ask questions of and work with on treatment access issues, including the looming crisis with Medicaid and the AIDS Drugs Assistance Program (ADAP).
As I get involved with ATAC, I'm reminded of John's advice: "stay there." There are a lot of questions I still don't have answers to ... What information do I need to learn? How do I keep from getting bogged down in treatment information? Do I need to set boundaries for myself to keep from getting so engrossed in the information that I can't pull myself out of it and teach? How do I balance learning more about treatment, the parole system, prison policies, and social services available for people with HIV who are recently incarcerated?
As John says, if you aren't what you appear to be, this group of people will see it first. So as we prepare to start the next TEACH Outside class, these questions weigh heavily on my mind. It was the lessons of TEACH Outside that got me through the conference. Now I have to figure out how to bring the conference to the members of the next TEACH Outside class.
Laura McTighe is Prison Activities Coordinator at Philadelphia FIGHT.
This article was provided by AIDS Community Research Initiative of America. It is a part of the publication ACRIA Update. Visit ACRIA's website to find out more about their activities, publications and services.