“The Hemophilia Community just wants to tell its story. This was a disease that was so
unfair to everyone. I’m so glad you’re doing this.” –Jeanne White-Ginder
In 2015, the National AIDS Memorial Grove (“National AIDS Memorial”) joined forces with the HIV Story Project (HSP), launching a multi-year collaboration to ensure that surviving voices of the AIDS epidemic are captured, curated, and retained for future generations. This collaboration is born out of a shared vision to ensure that the lessons of the epidemic are secured as an oral history across the vast and diverse stories of surviving voices. Through professionally-produced interviews and an interactive storytelling booth, this oral history project ensures that stories of the epidemic are captured and made available to future generations.
Although steeped in tragedy and prejudice, the story of AIDS is rich in relentless determination, and powerful in its success. It is a story with abundant lessons for current and future generations as they confront their own social justice challenges. The AIDS story, from the first recognized cases in 1981 to now, is a story of communities, consciousness raising, hope and determination. Through decades of denial and avoidance by government and society to the anxious realization that the epidemic was out of control, communities gained their voices, expressed their outrage, and took action. This story will empower communities for generations to come, but only if it’s known, and the National AIDS Memorial will ensure that it is told with dignity and reverence – and that our lost brothers and sisters never be forgotten.
Following last year’s focus on San Francisco’s Leather Community, our work this year articulates the tragedies and triumphs of the Hemophilia Community (on a national level), and includes stories of those who were lost and those who managed to survive, in addition to family and friends who were forced to witness loved ones perish helplessly. The interviews consist of high-production value recording sessions with individuals who were central to the Hemophilia Community’s experience with HIV/AIDS.
Filming commenced at the Grove on May 10 with interviews of Jeanne White-Ginder, AIDS activist and mother of the late Ryan White; Val Bias and Phillip Kucab of the National Hemophilia Foundation; and Jeffrey Moualim, (former) board member of the Committee of Ten Thousand. The Grove’s founders, members of the board, staff and other community leaders welcomed these special guests with a beautiful picnic lunch in Crossroads Circle.
Through documenting the history and facts surrounding the impact of AIDS on the Hemophilia Community (and its response), we will also highlight common ground between the Hemophilia Community and the Gay Community. The propensity to place blame for the AIDS crisis on gay men extended into the Hemophilia Community, and we hope to bring resolve to this strained relationship. Many of the critical advancements in HIV prevention, treatment, and research are the result of both community’s advocacy and activism, and these must be acknowledged and celebrated. Together, these communities tell a cautionary tale about stigma and discrimination, with lessons that speak to courage, resilience, and the power of mobilization for social justice.
Finally, the Hemophilia Community is owed an enormous debt of gratitude for its (unintended) role in alerting the country to the contamination of the blood supply from the 1970s through the 1990s. Faced with evidence that pharmaceutical companies and government regulators knew that the treatment for their disorder was contaminated, they launched a powerful and inspiring fight to right the system that failed them and make it safer for all. They have stood as guardians of the nation’s blood supply since that time.
This project will culminate with the premier of these videos as part of our annual World AIDS Day National Observance program on December 1st, where the Hemophilia Community will also be honored with the National Unsung Hero Award.