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All the Truly Important Things… You Haven’t Lost – by Andrea Spagat


We are pleased to present posts by StoryCenter staff, storytellers, colleagues from partnering organizations, and thought leaders in Storywork and related fields.

All the Truly Important Things… You Haven’t Lost – by Andrea Spagat

Emily Paulos

This is the story that brought us together. The story that spoke to everybody who was sitting around the table. It was our first workshop with the Asian and Pacific Islander Wellness Center (A&PIWC). The goal of the workshop was to to contribute to A&PIWC’s Banyan Tree Project, a national community mobilization and social marketing campaign to end the silence and shame surrounding HIV/AIDS in Asian and Pacific Islander communities. The digital storytelling component of BTP was called Taking Root: Our Stories, Our Community. But in that room, the workshop was about coming together and each person recognizing himself or herself in the story of the other.

Eric held us spellbound. We knew we were witnessing a moment especially rich in humanity, in dignity, in compassion, in nobility, in tapping into the most important things that make us human. His story was about finding out he was HIV-positive. All the storytellers in the room were also HIV-positive and were telling different versions of this story. About how HIV made them stronger and wiser and better able to support their friends and the people they work with in their communities.

Eric is a doctor who found out he was HIV-positive when he was a resident. Currently, he is an HIV specialist.

A pair of arms helped me stand up. It was my doctor.

A pair of arms held me in a tight hug and he whispered fiercely in my ear,

“All the truly important things in life you haven’t lost.”

If it’s your career you can still have that.

If it’s love you’re looking for you can still find that.

He goes on to say…

One day my mentor asked me, “Is it triggering for you being HIV-positive to work so closely with other HIV-positive patients?”

“No," I replied, "actually it’s deeply joyful. Maybe because what we have to offer is fundamentally hopeful.” And as I spoke it dawned on me that those fiercely whispered words from long ago had somehow come true.

The facilitators were awe-struck. At that moment we knew this workshop would be an inspirational kick-off to the series of workshops we would be facilitating together with Taking Root. To date, we’ve facilitated four workshops for this project – in the Bay Area, Guam, and Honolulu.

The workshops have hosted HIV-positive storytellers, along with people impacted by HIV who are not necessarily infected. The goal is to document the breadth of experiences with HIV in Asian and Pacific Islander communities. Through Taking Root, the Banyan Tree Project conveys how the impact of HIV and AIDS is broad, and how all community members have a role in supporting people impacted by HIV and ultimately contribute to a climate in which HIV can be easily prevented and treated. As Taking Root asserts, we are all living with HIV whether we have the virus or not.

The work started when Stephanie Goss, A&PIWC's Communications Manager, attended a Stories-of-Health Workshop at CDS. She understood how the workshop model would work to advance the goals of the Banyan Tree Project on multiple levels.

To begin with, it was important that a fundamental aspect of the CDS model respects the dignity of the people being impacted by HIV by providing a platform for them to tell their own stories rather than having their stories reported upon.

At another level, participation in the workshop brings together HIV-positive folks and people impacted by HIV, reinforces relationships and networks, strengthens the ability of a broad range of stakeholders to articulate issues, and improves their overall ability to provide leadership in reducing the silence and shame that surround HIV and AIDS.

Once the stories are completed, they are used to extend a media campaign that is already in place. They are featured on the Taking Root website. They have been shown at community screenings and they have been featured through twitter chats. In addition, A&PIWC is developing discussion guides that will help educators effectively utilize the stories in community settings.

A key component to the success of the partnership between CDS and A&PIWC is the high level of collaboration between the two entities. A&PIWC’s Banyan Tree Project brings a fully developed network of organizations that have a history of working together against HIV stigma. These organizations have provided leadership for developing the workshops outside the Bay Area. And the Banyan Tree Project staff has participated in digital storytelling workshops and facilitator trainings so that they can insert themselves fully into the facilitation teams at the individual workshops.

When we met in that first story circle we knew that the goals of the Banyan Tree Project and CDS's methodology converged on many points. We are aligned philosophically – CDS workshops are designed for accessibility by marginalized voices. We are committed to creating spaces in which storytellers can delve into subjects and experiences that are generally stigmatized and create shame in their communities. We are also committed to maintaining the safety of participants. Participants have used pseudonyms and are urged to exclude details that might expose them to further marginalization.

It is a privilege to listen to the stories presented in these story circles and processed throughout the workshop. They stay with me. And they challenge me to move forward in my world with a renewed commitment to perseverance, solidarity, nobility, courage, generosity, compassion – and joy and hope.