Finally, open discussion on AIDS

Help has moved online. And that's a hopeful sign for the black community.

July 31, 2008

Sharp criticism has rattled African-American institutions for their deep reluctance to generate conversation about HIV/AIDS – a leading cause of death for middle-age adult African-American men and women. Because social stigma has precluded open, healthy face-to-face discussion on the issue, the vital role of community as a support system has crumbled.

Now, the Internet is picking up the slack and getting the conversation started.

Community support – including the ability to discuss and address issues that threaten survival – is critical to us as social beings. Stable communities share three important components: a home (first place), a work place (second place), and an informal public gathering location (third place), such as a church, cafe, community center, or even barbershop.

If one of these is missing or fails to provide a place for discussion on life-threatening issues, the stability of the community is in jeopardy. Such an absence of a "third place" in the face of HIV/AIDS poses a serious threat to African-Americans.

Thankfully, technology's far reach means the Web is emerging as a powerful third place where traditional institutions and communities have failed.

Evidence shows that members of the African-American community have resorted to forming social bonds within the vibrant online community nicknamed the "Blackosphere" as an alternative way to connect with like-minded individuals.

These virtual communities, such as Black America Web, are created by, and are principally for, African-Americans. Through news, commentary, blogs, and discussion, they help empower members to mobilize around causes and issues that are critical to the black community.

These sites are proving to be part of the new front line in the fight against HIV/AIDS. They provide a type of social setting for African-Americans to gather en masse and discuss the disease openly when it's still taboo to discuss the issue face to face. Within the framework of computer-mediated communication, individuals dealing with HIV/AIDS can rebuild aspects of social support that may be lost due to stigma and reach out to those who may not have had access to such support in the first place.

And through casual acquaintances online, individuals can reach beyond their established real-life social networks, to access informal networks that may have information to which their own home and workplace networks may not be privy.

According to sociologist Ray Oldenburg, in times of crisis or of social upheavals, the seeds of change are often planted and watered in community locales (or third places). For example, the laws against workplace segregation in the 1960s were the result of assembly of African-Americans in churches all over the South. The labor solidarity movement, which emerged in many communities after workers met in local cafes to discuss their common problems and realize their collective strength, enabled them to effectively plan transformative strikes and other strategies that made sweeping change.

The same is proving true in these virtual public spaces in the fight against HIV/AIDS. Analysis of conversations within the Blackosphere gives valuable insight into how seriously members of the African-American community take the HIV/AIDS epidemic. It highlights what they personally perceive as factors that aid in the spread of the disease.

It lets them voice anger and frustration at established institutions that are deemed to be inactive or ineffective on the HIV/AIDS issue. It offers preventive tips to others online, treatment options, personal testimonies, expectations on what they believe the future holds for community, and allows posting of germane articles on myths and realities in the spread of the disease.

Blogs are ideally suited for this community building. They represent a single place, outside large social gatherings, where people can engage in real-time conversations on a grand scale. And unlike in tête-à-tête discussions, people are empowered by the relative cloak of anonymity online, freeing them from the fear of social sanction.

Never before has a medium existed that can connect and enable conversations among people who are so geographically dispersed, or so culturally and ethnically diverse, with the potential for everyone to contribute to the discussion and be heard. This new frontier on the ongoing fight against HIV/AIDS in the African-American community is a hopeful sign of a massive grass roots mobilization. An old commercial once said, when it comes to AIDS, silence kills. African-Americans are silent no more.

C. Frank Igwe is a fellow at Harvard Kennedy School. This essay is based on his PhD dissertation.