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A Guide to Blogging about Life with HIV/AIDS

In recognition of the hundreds of HIV-positive bloggers chronicling their lives worldwide, a group of online activists affiliated with the project Rising Voices have created a new guide to blogging about HIV/AIDS. The recently launched “Blogging Positively” guide is a collection of case studies, interviews, and best practices.

Rising Voices aims to help marginalized communities in different parts of the world make better use of citizen media to make their voices heard globally. It is an outreach project of the international blogging community Global Voices.

Rising Voices has provided micro-grant funding to around 20 citizen media projects over the past two years. In the process, the project has coalesced a large group of people worldwide who use internet and blogging for development and education.

David Sasaki, the director of Rising Voices offers some background to the making of the guide:

The Blogging Positively project began two years ago when Kenyan blogger Serina Kalande, volunteered to lead a working group to discuss how citizen media can best be implemented in the field of HIV/AIDS. [..]

Blogging Positively

Three online chats brought together people from all over the world, and from a wide range of fields. In addition to the creation of this guide, the participants of the chats collaborated on the creation of a map-based directory of HIV-positive bloggers who bravely defy stigma and discrimination to communicate their situation to the rest of the world.

So why do we need this guide? On his personal blog El Oso, David Sasaki writes:

At least in my peer group, most of us have foolishly done something in our lifetime which allowed for the transmission of HIV. The fact that we either are or are not HIV-positive is often times a matter of chance and circumstance. Still, stigma and discrimination against those who are HIV-positive is rampant and worldwide. It is a snowball effect: discrimination leads to silence and silence contributes to the spread of HIV/AIDS. Silence also creates misunderstanding and misinformation about what it is really like to live with HIV.

Some brave bloggers are defying the stigma to fight against the silence. They are living and blogging openly about their HIV status, and in doing so they are providing support and information for others.

Among the bloggers who have chimed in to support getting more people to join the online conversation about HIV/AIDS, Michael A. Jones writes at Gay Rights on Change.org in the United States:

Blogging Positively is a role model. It's a unique capacity building resource that draws together blogs, podcasts, and online photo and video sites to create new powerful opportunities for activists aiming to spread awareness about HIV/AIDS, and end the social stigma all too often associated with the disease.

Blogging positively GuideAn interview with the author of Blogging Positively

The Blogging Positively guide was authored by Janet Feldman of the Kenya AIDS Intervention Prevention Project Group (KAIPPG) and ActAlive, which encourages the use of art and media to address HIV/AIDS and other human-development challenges. We have talked with Janet to learn more about the goal and the journey of the project:

  • Q: How did you get involved with the Blogging Positively initiative?
  • Janet FeldmanJanet Feldman: Rising Voices became interested in an HIV/AIDS-focused initiative because so many organizations applying for grants (through the Rising Voices micro-grants program) have a health-related focus, in particular around HIV/AIDS. In 2008, some members of Rising Voices formed a dedicated email mailing list to discuss how citizen-media tools can be used to address issues related to this pandemic. As a Rising Voices member, I noticed this activity and became intrigued in the topic myself, so joined the discussion group.

    A series of four interactive chats were also held on the subject, drawing a global audience from diverse fields and affiliations. I took part in three of them, and wrote summaries for each one, as well as reading the transcript of the chat I did not attend. I offered to put together the Guide in February of this year, based in large part on the information and enthusiasm generated by the chats.

  • Q: How long did it take to prepare the guide?
  • Janet Feldman: The chats were held over the course of a year (April and December 2008, February and March 2009), and each chat summary (I did three) took a couple days to produce. I shared the summaries with chat participants and others, asking for their feedback. I did research for our mapping project; outreach and networking to HIV-positive bloggers and other individuals, as well as nonprofit organizations and other parties who I thought might be interested in the project; and also looked at online blogging resources. All feedback and information I collected was synthesized into the Guide.

  • Q: Did your work experiences–especially with your two HIV/AIDS-related nonprofits–help in the preparations?
  • Janet Feldman: Yes, my own background and work experiences have helped immensely, since the activities of KAIPPG and ActALIVE are enhanced by use of information and communication tools. I co-authored KAIPPG's first ICT-related grant proposal, on the subject of women, agriculture, and technology. I had to research what would be feasible and useful (from a technological standpoint) in a rural African setting–with minimal modern infrastructure–and for a population neither fully literate nor accorded equal status with men, which often limits access to opportunities and education.

    This experience gave me insights into the benefits and challenges of different forms of knowledge-transferal and communication. Since all KAIPPG members and clients are either affected or infected by HIV/AIDS, this also became an opportunity to address the pandemic in a new way, too.

    I have had related personal experiences as well:  I became acquainted with HIV/AIDS in the 1980's — when the disease was first discovered and named — because friends at first were sick and dying, then living longer-term, when medications became more available. Many millions are still in both situations, and I worked on this Guide with them in mind.

    Finally, I have lived for twenty years with a weakened immune system, which has significantly affected my life, and has given me some idea of the health challenges encountered by others.

  • Q: How important is it to hear from the HIV-positive persons and engage them in a conversation?
  • Janet Feldman: It is crucial to hear from those who are HIV-positive, and to ensure that their voices are heeded, supported, and amplified. Even in the context of related nonprofit work, people living with HIV/AIDS  are sometimes not consulted or brought into activities designed with them in mind. People living with and affected by HIV/AIDS should be central players in program creation and implementation, decision-making, and policy formulation related to addressing the pandemic. Many changes thus need to be made, and blogging can help to do that, because it is a powerful medium both for self-expression and for influencing others. A popular slogan says it all:  “nothing about us, without us!.”

  • Q: Do you have any experience to share?
  • Janet Feldman: Yes, I would like to share two experiences:

    One, I have been reading a number of HIV/AIDS-related blogs this year, and discovering how empowering and inspiring this form of storytelling and communication can be, both in the words of the bloggers themselves, and in the reactions of their audience members, whose commentary can be equally moving and eloquent. This indicates to me how inspiring and even life-changing blogging can be, both for the person blogging and for those who encounter the blog and the blogger.

    The second experience involves one of the bloggers profiled in the Guide, who needs to remain anonymous in this commentary, because he is planning a visit to his own country soon, and “visibility” might jeopardize his work there. A recent law places a ban on informal meetings of HIV-positive persons, requiring instead that groups first register with the government. The government has viewed such unregistered gatherings as “political”. The irony is that political activism may not have been the original intent of those meetings, but it has become more a goal since passage of the law. Anger and resistance have been voiced online, and there is no doubt that support for policy changes will be enhanced by the blogging and other virtual linkages that people and groups are now making.

    The Guide covers some valuable information on this subject–from blogging anonymously to technological tools that can help bloggers circumvent censorship and controls of various kinds–so hopefully it will help in terms of empowering people to advocate for their own rights and human rights generally, as well as better laws and policies.

  • Q: How will this guide help the many millions of HIV-positive persons to start telling their stories online?
  • Janet Feldman: This Guide is geared towards the novice, someone thinking about blogging or just starting to blog, though experienced bloggers will hopefully find it useful, too. There are technical tips; excerpts from blogs written by people who are HIV-positive; and case studies about groups of individuals and organizations who use blogging to address HIV/AIDS. There are answers to commonly-asked questions; suggestions about how to get started, and why to blog at all; a section on “humor”, by a veteran blogger; and a discussion of tools other than blogging to get your message across, including how these tools can work in synergy with blogging.

    The Guide also addresses legal issues and blogger responsibility; how to minimize fear of the unknown when blogging for the first time, as well as instill a sense of “ownership” and leadership related to the blogging process and its outcomes; and mentoring (for teachers and facilitators). The map we are developing–profiling HIV-positive bloggers, and those who use blogging to address HIV/AIDS–should be very encouraging and inspiring to new bloggers. The url where that can be found is included in the Guide, as is subscription information to the rv- positively forum, where discussions about the Guide will be taking place.

    One important note: there are many individuals who blog about the pandemic, without themselves being HIV-positive, and it is important to include them in this work, both in thought and deed.

  • Q: How do you plan to promote this guide?
  • Janet Feldman: We have plans to post news about the Guide to numerous health, development, and ICT related e-forums, and on websites and blogs; to alert individuals, groups, and organizations around the world working on issues related to HIV/AIDS; to do outreach to HIV-positive individuals and groups; to inform the media; and to translate the Guide into different languages.

    Other strategies and ideas might include: devising ways to include and involve people living in areas of infrequent Internet accessibility; developing partnerships with networks, nonprofits, blogging platforms, and others; organizing an international corps of local bloggers, nonprofits, and others, who will use the Guide in their work; developing advocacy campaigns on different themes outlined in the Guide, and choosing a day where bloggers around the world might all blog on one theme; “crisis blogging” for global hot-spots, using the Guide as a resource.

    We might also consider helping to foster training and mentoring programs; providing advice (a “help desk”) to those implementing the Guide at the grassroots; collecting and presenting stories of people affected by HIV/AIDS, especially those who are or were (when living) bloggers; facilitating formal (activist) and informal (support and friendships) blogger links; meeting face-to-face with other project bloggers when possible; setting up a blog for those connected to the project, so we can share and discuss issues related to the Guide in an ongoing way.

    Download the ‘Blogging Positively Guide’ from Rising Voices.

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