One of the interesting features about the grant that we received was that this was a “capacity-building fund.” Capacity building is really about acquiring resources – in this case knowledge, skills and networks – that give a person or organization the ability to do something new. In this case that ‘something’ is the ability to conduct community-based research (CBR). 

I believe that having some basic understanding of research methods and process is important, because it empowers people to be able to evaluate incoming information. This goes hand in hand with scientific media literacy.  In the information-age where we are absolutely inundated with information, including news about latest research findings, the ability to understand research methodology is an important skill. It helps prevent people from misunderstanding research findings or from being “taken” by false claims.  But for organizations, the capacity to conduct community-based research is even greater than that - it creates the ability to learn more about the community’s needs and create closer connections and relationships with them. In fact, the research process itself can be a gateway to empowerment among the client population.

People living with HIV have been studied a lot! Bob has written about this before.  Anyone who has been living with HIV for any length of time is no stranger to research.  And the experience is not always a positive one. In fact, the traditional approach to research is reminiscent of colonialism: a research team enters a community, takes what they need, and leaves, without the community ever directly benefiting from the study.

CBR is a fairer approach to research. It recognizes that research should be a mutual exchange of knowledge, hence the emphasis on knowledge translation (making the findings accessible to people who may not be academics or experts in the field themselves) and exchange (understanding that both parties have something to share, which is different from knowledge dissemination - a unidirectional flow of information).

CBR also ensures that the community being studied is empowered to participate in the research process, in some ways perhaps even having the opportunity to participate in the research design and/or ownership of the data. Because CBR is intended to be inclusive of the community-being studied, it is, in a way, very similar to the principles behind GIPA, suggesting that the community should be involved in the research that potentially impacts their lives. 

Understanding and employing these features has been a wonderful experience and, I believe, an excellent learning process for us at ACG. It has allowed us to execute many of the principles we aim to employ in other areas of the organization to a new goal and process. I believe it has also been a positive experience for our research participants.

Another feature worth mentioning is our experience in having a Peer Research Assistant (someone living with HIV) work on the project. Our peer research assistant, as part of our Working Group, conducted many of the interviews. However, he wasn’t just an interviewer. He helped with the research & methodology design and contributed in many ways, making sure that the interview schedule captured or addressed key issues. He urged us to address issues related to HIV beyond the disease, remembering the impact of trauma and other life experiences, and the way they intercepted with HIV.

He was not the only person living with HIV involved in the research, but I believe that his relationships with ACG clients allowed the study to gain credibility among our client population. Having a peer research assistant who is well connected and respected in the community provided a gateway to having participants trust in the process and open up about incredibly intimate issues. Peer research assistants have to maintain clear boundaries and professionalism while executing research with their peers, but this is clearly possible for people with skills and experience in this regard.  Organizations should not write off the possibility of utilizing peer research assistants because of fear of boundary issues. Our peer research assistant provided an invaluable contribution to the project.

No doubt, I have learned just as much about community-based research as I actually have about the subject of the research itself. From writing a research grant proposal to presenting research in lay language, we have built a great deal of capacity in our organization, gained many skills and strengthened bonds as team members. Our peer research assistant was hired and now works at the agency part-time. I am sitting on a committee to develop another community-based research study under the wing of anther organization. And the project continues to be a learning process, as we move forward with knowledge translation & exchange activities.  

The conference is over. It’s been an amazing experience and I am so grateful to have been part of it.

A few highlights.

Show Me the Love: Poster Presentation.

One of the reasons I went to the conference was to present the findings of Show Me the Love. Getting the opportunity to present our research in the Poster Exhibition and discuss the results with delegates from around the world was a great opportunity!  But, AIDS 2012 has a strict embargo policy that forbade any dissemination of the findings until after the conference, so now that the conference is over, I look forward to sharing the findings that, I believe, are pretty important.  I will share the findings more comprehensively in the near future with PositiveLite.com readers, but for a quick sneak peak, you can see me telling Mark a little bit about the findings in his latest video on My Fabulous Disease.

Interestingly, as soon as I started describing the research to Mark, he quoted the Denver Principles, which I had also cited in our final report, and which to me, represented one of the reasons this research matters:  The rights of people with AIDS include the right to “as full and satisfying sexual and emotional lives as anyone else.” 

Learning about Video-Blogging 

I know that Mark was disappointed that no cute guys participated, but the breakout sessions at a social media skills-building workshop (led by Mark and a number of people from the Body.com, A Girl Like Me and Positive Women’s Network,) led to a private one-on-one session with me and Mark on video blogging. Woo-hoo! This private attention meant that I got a full-on brain-dump by Mark. This break-out session could have been called “everything Mark knows about video blogging, in 30 minutes.” I know he was exhausted – actually, I was too – so I really appreciated his attention. I learnt more in that session than any other. And, he followed up the next day by visiting my poster! 

A few great sessions 

At an international conference, not all talks are going to be relevant, and not all speakers are going to be good. Some abstracts will misrepresent what information will actually be shared, and celebrities are often not good speech-writers.   If you are looking to get caught up by watching the webcasts, here are my recommendations: 

July 23: The Plenary. Watch the whole thing.  It includes an excellent summary by Dr. Anthony Fauci at the beginning and a good address by Hilary Clinton at the end... but in the middle, it has the best speech given during the entire conference. Not just in my opinion, but, it would seem, in the opinions of many. Whenever I would ask people I met what they have thought of the conference, the answer would always be, “that guy who went on before Hilary was really good.” “That guy” - not a celebrity, nor a politician, is Phil Wilson, from the Black AIDS Institute, and he gave the most powerful speech of the conference. 

July 25: In the Plenary, be sure to watch Linda Scruggs on “Making Women Count:  A Comprehensive Agenda”.  Absolutely fantastic. Coming in after a technically- heavy couple of speeches, Linda makes the issues real by weaving in her personal experiences. She has wit that makes you laugh out loud, but a sensitivity that will bring tears to your eyes. And yet her fervor drives home how important it is to include women as full partners and participants in AIDS programming and research. 

July 26: This plenary was good too. It includes the Ugandan speaker, Dr. Paul Semugoma, addressing the importance of involving MSM (who I mentioned in Friday’s post) as well as some important presentations about sex workers. The fact that sex workers from around the world were excluded because of travel bans was a theme that ran through the conference, thanks to the well-organized protests and usage of props by the committees. Some of these presentations – especially the one by Cheryl Overs, which included a video from sex workers in Russia and Eastern Europe – drove home why these issues are so important and reminded us of the principle, “nothing about us, without us.” 

Renewed commitment 

Many times in this conference I’ve returned to my hotel room with blood-shot eyes and aching shoulders, hoping to get as much sleep as possible before rousing again at 6AM.  The news here has not all been good, in fact there’s been enough troubling information for me to stand before the Martin Luther King Jr. monument, and for the first time in my life, question the words of my hero – that the “moral arc is long, but it bends towards justice.” But, at the same time, I feel a sense of renewed vigor and excitement to the projects we are working on at home, reminded of their importance, and inspired by the passion and commitment of people worldwide. I love this field. I love that I work in an area where we push each other and ourselves to address every element of human rights, that we fight for inclusiveness and equity of every angle.  I love addressing the challenge of making issues like sex and pleasure topics that can be embraced rather than hidden. Doing this involves creativity, compassion, tenacity and, as Elton John said, “love.” I want to see the goals we’ve set for ourselves come true. I want to work in this field until it ceases to exist.

When I arrived in Washington, the presence of AIDS 2012 was everywhere. Volunteers were at the airport to greet us and even the immigration security knew why were there. “You here for the conference? Go ahead.” Advertising covers the walls of the airport and subway system; posters addressing AIDS are everywhere. There are Condom and HIV testing Campaigns. Pharmaceutical companies advertising HIV medications. The Ford Foundation practically papered the walls of the major metro stations. And the CDC has a fabulous campaign that fights stigma by showcasing real people living with HIV and their friends and family (including one ad featuring Mark S. King!).  When I stepped off the plane I felt like I’d entered a alternate universe where HIV actually matters and is considered an important issue to people. What a concept! 

That’s the thing about being at an international AIDS conference. Instead of the usual feeling of being isolated in your beliefs, delegates are welcomed to an environment where thousands of other people share many of your values around issues such as harm reduction, human rights, and HIV. Actually, that’s too a blasé way to say it - at AIDS 2012 we are surrounded by passionate, dedicated people who are committed to fighting for the same cause. A great feeling. 

It’s a strange experience, though – in some ways joyful, and hopeful, and in other ways discouraging. There is joy in seeing the work, commitment, creativity and tenacity from people around the world. There is hope in seeing access to treatment scale up and in some areas, the prevalence of HIV go down.  After all, the past couple of years have seen some exciting developments in HIV prevention technologies – and certainly a lot has been achieved since my first conference in 2006. But it is also, in other ways, so sad, and so frustrating, to see just how prevalent HIV infections and deaths due to AIDS are, when we have so many tools at our disposal. 

It’s extra frustrating because infection and death are often caused by things that should not exist… but are so complicated and difficult to change - things like racism, homophobia, stigma, and the violation of human rights against, women, drug users, and sex workers, to name a few. 

I saw the Normal Heart last night, and that frustration of Larry Kramer was so palpable – frustration of being in a crazy world, where no one listens or responds, no matter how hard one fights or how bad things get. Today, I witnessed that frustration again, by a plenary speaker from Uganda. He argued for the importance of integrating MSM into prevention efforts and having sexual orientation data captured for HIV prevention and treatment programs. The complete absence of MSM on paper means there is no impetus for the government to provide targeted programming, no ability to understand an individual’s level of risk or how to effectively reach and communicate with MSM, and the lack of epi data on that population means there is no way to understand who is most at risk in the country or who needs what.  How frustrating to be arguing for something that seems exceptionally obvious.   

The day before, I’d seen a photography exhibit – cameras 4 change -  showcasing the importance of clean drinking water in HIV treatment & prevention, which so many people in developing countries lack. One small example of the connection: if drinking water is impure and causes chronic diarrhea, it is impossible for people to absorb their medication – so if someone is lucky enough to get treatment, they may not be able to benefit from it without a clean water source.  From lack of epi data on MSM to a lack of clean drinking water, I experienced moments during the conference where I felt humbled. In particular, I felt humbled that I was presenting research on a topic that is so high on the pyramid of needs.  At AIDS 2012, there are many people protesting issues that address basic needs, such as access to treatment, shelter, freedom.  We Canadians have a lot to be thankful for.  Don’t get me wrong, I am angry about many of the issues our country is facing right now, including criminalization and anti-harm reduction drug policies – yes, I’m really angry - but with a global perspective at AIDS 2012, I’m also humbled. 

***********************

Obama did not show up on Sunday.  He was in Aurora, Colorado.  

Before I launch into my rant, I have to give him some credit. There was a video that had been made with Obama, on AIDS and the United Sates, welcoming the delegates. Hilary Clinton was clearly speaking on his behalf when she announced new funding initiatives. And I heard it through the grapevine that he arranged a private meeting with PHAs representing different groups this morning. But the fact that he did not attend the Opening Sessions at which he was registered to speak shows that ultimately, politics is about getting the people’s vote, and thanks to the way that the media controls the minds of the public, AIDS is not exactly a priority.  

At the risk of sounding insensitive, why is it that an isolated incident in which tens of people were killed or injured necessitated the presence of the president, when AIDS kills millions of people every year and affects millions more?  In the past few days, the copies of USA Today landing at my hotel room door have been dominated by images of the families victimized by the Colorado tragedy. Americans are watching their televisions and reading their newspapers, and these media sources are all focused on the shooting – not AIDS. 

Nothing has been said about Obama’s absence. I haven’t heard a peep of complaint. There have been some protests around access to treatment, the travel ban against sex workers, pharmaceutical trade agreements and other pressing issues, but no one complained that Obama didn’t show up.

At the March on Washington, Cornel West – and I wish I’d been able to record his speech, it was so good – said something to the effect of: What makes a President great is having other people that hold them accountable. The Martin Luther King Jr’s and the Eleanor Roosevelts that push their presidents to be accountable create better leaders that do great things. And today, we have to push Obama to be accountable to ending AIDS. 

In 2006, people knew Harper wasn’t going to show and were able to craft damning speeches and demonstrations to criticize him.  It was all over the news, and speakers openly criticized him. But, perhaps because Obama’s absence was a surprise, no one’s really addressed the issue. 

Well, like Cornel West said, we have to push our leaders to be accountable.

There are lots of reasons for me to be excited about this incredible conference, including the fact that I will be presenting the findings of our community-based research study, Show Me the Love,  for the first time. Our research has identified some important barriers to experience to sexual intimacy among people living with HIV & AIDS, and I look forward to sharing and discussing these results.

I will be sharing these findings on PositiveLite.com in the near future, but have to wait because the conference has a very strict embargo policy; the results will be shared in Washington DC for the very first time.  While I will not be giving an oral presentation, our abstract was accepted for the Poster Exhibition. If you’re attending the conference, you can find our poster in the Exhibition on Wednesday, July 25, from 9am – 7pm. If you have any questions or are interested in the project, I will be available at the poster, from 12:30 – 2:30pm on the same day. I would love it if you stopped by to say hello!  I’m very excited about sharing our poster and having this opportunity. Hey, after AIDS 2012, I will be able to say that I presented information at a conference at which Sir Elton John was in attendance.

One of the challenges at this conference – with 25,000 attendees, 491 sessions, 243 exhibitions, 79 conference hubs, 108 Global Village sessions, 27 networking zones, 116 booths, 23 art exhibits and 55 affiliated events – will be what do! I’m not even sure if these numbers capture all the workshops, parties, marches and other related events. What is clear is that some difficult choices will have to be made. I’ve narrowed on some key areas of knowledge/skill development that I would like to hone in on. They include:

• Integrating a focus on pleasure into prevention efforts
• Understanding the latest information on an HIV cure, HIV vaccines, and rectal microbicides
• Developing skills in community-based research and evaluation
• Using social media to convey complex or challenging prevention & scientific messages
• Using artistic processes for community activism & engagement – especially in relation to stigma and/or homophobia
• HIV, the law, and the criminalization of HIV non-disclosure
• Positive Health, Dignity & Prevention, especially in relation to education and training

I’m trying to focus on issues that pertain directly to my work, as opposed to my own general interest, and learn from a variety of perspectives around the world, while attempting to choose sessions that will have direct relation to my community’s geographic region and population.  I’m also leaning towards skills-building workshops and interactive presentations to maximize the benefit of being there in person. (One can learn quite a bit of factual, technical information by reading, after all).

This will be my second International AIDS Conference.  My first – and only other - experience with the event was at the 2006 International AIDS Conference in Toronto, where I worked as a volunteer. At the time I was in Grad School, struggling within what I felt was a narrow-minded, male-dominated and quantitative-focused department. I had a strong desire to work on research that was practical and useful to grassroots organizations. I was incredibly close to quitting, feeling that staying in academia was only delaying me from getting into the field and doing something meaningful.  Volunteering was a way to stay connected to the issues that I was passionate about, and I did as much volunteering as my schedule would allow.

Volunteering at AIDS 2006 was one of the stand-out, most incredible experiences of my life. I found myself surrounded by people from all over the world, wearing different forms of dress and speaking different languages.  Attendees were working for the same cause, but bringing forth experiences, ideas and lessons learned with tremendous diversity and a huge range of knowledge. I was surrounded by people with passion, experience, and creativity that was totally different from mine. There was the marketplace with crafts and jewellery from all over the world, funding income-generating projects for NGOs.  There was the Global Village, filled with artistic and theatrical spectacles. There was so much information, so many resources and ideas, and so many people!

Volunteers were treated incredibly well; a hot meal each day was provided, as well as snacks. Volunteers were given our own conference bag and a transit pass. Typically one might work a 6-hour shift, as I recall, which would – notably - afford you the rest of the day to take in as many sessions as you wanted; volunteers were allowed to attend any event, as long as there was room. This meant that I got to shake hands with Stephen Lewis (my biggest role model at the time) and listen to talks given by Bill Clinton, Bill Gates, and hundreds of other incredible speakers.  It was inspiring, moving, and tremendously exciting. It was also incredibly tiring; to maximize my participation in the conference I would leave home at 6am and usually arrive home at 12:30 am.  (Spare time might be used to write rebuttals to Margaret Wente’s stupid articles.) After a week of doing this I was drop- down, drag-out exhausted. But it was an experience of a lifetime.

Looking back at those days where I was filled with an activist’s enthusiasm, but somewhat lonely in my passion, fills me with nostalgia. There is something about being so desirous of knowledge that is, perhaps, youthful and pure.

These positive experiences have made me even more excited for this conference, because I have felt that energy, inspiration and awe from the conference before. I can only imagine that in Washington, DC., this energy will be magnified ten times over.

I would like to say that I will be writing blog posts from AIDS 2012, but my schedule is crammed so tightly, I might be making false promises. At the very least, I look forward to keeping notes and writing follow-up posts after the conference.

See you in Washington!