Connecting the dots: stigma and social media

Last time you heard from me, I was writing about my amazing experience at the Vienna YouthForce pre-conference. I’ve just returned to work and want to fill you in on some interesting stories from the rest of my time away.

The main conference felt slightly overwhelming in comparison to the bubble of the pre-conference. With over 20,000 participants and tons of events to go to, there were long days and lots of information. I attended many diverse sessions—from a plenary with Bill Clinton, to North American regional meetings, to thematic based panel discussions on women and girls issues. The conference centre spanned two subway stops and consisted of many large session rooms, mini rooms, a huge exhibition hall, lots of overpriced sandwich stalls and my personal favorite, the Global Village.

The Youth Pavilion. (Photo courtesy of viennayouthforce photostream.)

The youth pavilion in the Global Village was a great space to relax, work, connect and chat about the issues with fast friends made from the pre-conference. It was a comfortable and friendly place to go and you could always find someone to talk to about the sessions, fill you in on the latest protest plans (there were many) or let you know where the party was that night. Whatever you were talking about, even if opinions differed, it always felt like a safe space.

Being in this environment, it was very easy for me to forget the daily world of stigma and discrimination that exists for many people with living HIV and AIDS. The reality came crashing back down during a conversation I had with my friend Cathy* at a party hosted by MTV. (Yep, that’s right, MTV hosts parties at the AIDS Conference!)

Cathy is from Australia. She’s 18 years old, was born with HIV and is an amazing young woman who is part of the positive women’s network in her community. She has not disclosed her status to very many people outside of conferences like this because she was scared of how they would react.  A session that she was speaking at was filmed and a friend of a friend posted it on Facebook. She was tagged in the video, it went up on her wall and things changed for her very quickly. Before she could take it down, many people viewed it and all of a sudden, everyone knew her status. Her father’s business partners, her classmates, her childhood friends. Her boyfriend was immediately fired from his job and the vile remarks quickly multiplied.  As she told me the story, chills were running down my spine and I felt sick. I couldn’t believe that anyone could say those things about her.

Throughout the conference, I attended a few sessions on stigma and discrimination, but it was always discussed in a fairly academic way by researchers presenting abstracts on topics such as “Framing Positive Perceptions and Practice: Analyzing and Addressing Stigma.” As is usually the case, firsthand testimonials are always more powerful and this one was no exception.

It also brought up an important point to consider around the explosion of social media and instant information (especially amongst youth) and the need to balance that very carefully with confidentiality concerns. This was particularly interesting given that I facilitated a workshop on social media and HIV and AIDS activism during the pre-conference and this concern was (now) noticeably absent from the conversation.

Lauren (right), with Pablo and Yunuén from Espolea: http://www.facebook.com/Espolea

This was the point in the conference that connected some of the dots and reminded me why I do the work I do. As a result, I commit to share my experience of the conference with everyone (and anyone) who will listen and in my personal and professional life work to reduce the stigma faced by people infected and affected by HIV and AIDS. It’s the least I can do.

Now I’m back at work, and the conference is already starting to feel like a distant memory. That said, I’ve been in touch with many of my friends and look forward to finding opportunities to collaborate with and learn from the many amazing youth-led organizations that I was exposed to. I feel re-invigorated and inspired by my experience and now more than ever believe in the power of young people to effect positive, innovative change in their communities.

-Lauren Chender, Program Manager

*Name has been changed.

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