Both the medication for and attitudes towards HIV and AIDS have changed greatly since the '70s and '80s but the stigma surrounding the disease is as great as ever in some areas, despite an evolving understanding.
"We know how to treat the disease," explains Lance Toma, Executive Director of the Asian & Pacific Islander Wellness Center in San Francisco, but "at the core, there's a lot of stigma, not just in the API community but in a lot of different communities. And that drives an epidemic like HIV."
API Wellness Center was established 25 years ago "to provide medical assistance, testing and emotional support for people in the Asian and Pacific Islander communities in San Francisco" as an organization that would be "linguistically and culturally competent."
The stigma that surrounds HIV, as well as the reluctance to talk about it, are even more present within the Asian and Pacific Islander communities than in others. Toma explains that, "oftentimes what we hear is that 'your numbers are low. Why should we care?'"
But that lack of discussion means that "over 2/3 of Asian and Pacific Islanders have not been tested at all and what we know too is that 1 in 3 folks in our communities who are HIV positive, 1 in 3 don't know their status. So we have so much work to do," elaborates Toma.
In order to help fight the stigma that surrounds HIV and those infected and affected by it, API Wellness Center launched an initiative called the Banyan Tree Project. With the goal of reaching more people than before, Banyan Tree is "an anti-stigma campaign annually," says Toma, "and it focuses then specifically on May 19th, which is the annual API HIV/AIDS awareness day."
This year, however, they have launched a new project within Banyan Tree, making use of modern-day technology and social media to tell the story of those affected by HIV. Those who often live in silence with the disease, rarely have a voice or face within the fight against HIV, and the Baynan Tree Project wants to change that.
The Taking Roots Digital Storytelling project is the chance for people who have HIV, or who have been in some way affected by it, to tell their own story. During a 3- or 4-day workshop, the participants get the chance to talk through their own stories with others who are also affected by HIV.
They then learn how to create a short video that tells their story, using photos, music and their own narration of their history. For those who wish to stay anonymous, it is easy for them to do so, as only their voice needs to be heard, but it still gives them a powerful outlet to tell their story.
One such participant, who is called Hatsume in her video (not her real name), explains that she was excited to be a part of Taking Roots "because I think it was an opportunity for a woman to really tell their side of the story about being infected with HIV."
Her video is a powerful tale of her journey to discovering her diagnosis and serves as a very interesting contrast to the usual assumptions that HIV is a disease that mainly affects men in the western world.
The journey of telling their stories is a highly emotional one but it is one that leads to a new sense of power. During the workshops, the participants are guided "to share a very intimate part of themselves that they feel comfortable with and that they get their words and their stories and their images captured digitally. And it really is a powerful medium," explains Toma.
The benefits go further even than giving people an outlet for their own emotions. The hope is that by hearing the stories of people who have direct experience of life with HIV, the stigma around the disease will begin to lessen.
"When we really hear somebody's story, from the first person and listening to their hearts and their dreams and all of that, there's something so inspiring" that drives people to find the strength to discuss their struggles, emphasizes Toma.
Living in silence, afraid to discuss the risks of HIV because it is considered socially unacceptable is not a way to help eradicate the disease. For those who are infected with HIV, suffering alone, without the much-needed support of family and friends is extremely difficult but the fear associated with revealing their 'status' is as great as their need for support.
The Banyan Tree Project hopes that its Taking Roots Digital Storytelling project will open up the channels of communication and allow people to discuss their fears with those around them, without fearing their reactions.
"If we can really get those stories out and really model how we can talk about HIV," says Toma, "I think it kind of breaks down the fear and it then breaks down the stigma and then it allows people to talk about health and about HIV in their families and communities."