The crown symbol of the fight against HIV/AIDS now weighs 54 tons, spans 1.3 million square feet and includes 94,000-plus names on more than 48,000 panels. The NAMES Project AIDS Memorial Quilt has come a long way since its inception — it’s now even available online — and Joan Juster helped get it off the ground. She lived in San Francisco when the quilt originated in 1987, and as loved ones continually fell victim to the disease, “had to get involved because you had no choice.”
Juster submitted a panel to display at the third International AIDS Conference, which was held in Washington, D.C. Twenty five years later, she’s again in the district as the Reader Coordinator at the NAMES Project. For this week’s XIX International AIDS Conference, she has coordinated and scheduled volunteers to read names of AIDS victims aloud on the National Mall and more than 50 other quilt locations in D.C. In addition, Juster works for the AIDS Emergency Fund, which provides critical financial assistance to people living with HIV/AIDS.
APHA spoke with Juster on Monday to find out what the quilt represents.
Q: How did you get involved with the NAMES project?
I was living in San Francisco in the 80s when it was Ground Zero for AIDS. People were dying quickly and horribly, massively. It was awful. I happened to be working in the Bay Area at the time so I had a lot of gay friends, and the devastation was unimaginable. People kept disappearing off your landscape; every week there was another one going. So I got involved with the NAMES Project when they made their first panel in . I hoped to get it into the display for Washington, D.C., that year and I did. And when I turned it in, I realized I just turn in the panel and give these people more work, and they were overwhelmed with thousands of panels that had been shipped in from all over the country and all over the world. I had to stay and help and I’ve been doing it ever since.
Q: What do the names being read aloud on the Mall represent?
Throughout the display we have people come forward to the microphone and read aloud lists of names from the quilt and they are allowed to add to the list any person names they’ve lost to names. It makes the loss real when they read aloud loved one after loved one. Ninety thousand names — that’s a mid-sized American city. That’s what that represents. By the time the NAMES Project was started in 1987, the Castro District in San Francisco — a 10-block district — had lost over 1,000 people just out of that neighborhood, and that’s just too much to grasp. So when you read 32 names from a quilt, each of those is someone’s friend, or lover, or brother or son. It makes it real for you.
Q: How much progress has been made since the AIDS fight began?
I’m not a scientist, I’m not a public health specialist. I’m just a volunteer. We’ve been waiting 30 years for a cure for AIDS. There is a cure such as it is in that is completely preventable, and if people educate themselves and act responsibility, they can take care of their own health and their partner’s health. We know that about 20 percent of the population doesn’t even know their HIV status. Until such a day where there is a cure, which is not in my power, I leave that to scientists and hope to God they do that. Until that time, we need to keep educating people to protect themselves, be smart and knowledgeable about their sexual practices, and stop new infections. Now, there are millions of people living with AIDS that are going to need care for a very long time.
Q: What is the AIDS Emergency Fund?
Much of my work in AIDS is in low-income populations where it’s very difficult to care for them. They have unstable living situations, they don’t have money for the drugs, they don’t have money even for regular food. So keeping them on a drug regimen is almost impossible. So we all need to step up and take care of people.
The AIDS Emergency Fund — that’s what we do. Yes, we’re an AIDS organization but we’re primarily a social justice organization. Because it’s about poverty. Yes, AIDS is a manageable disease if you have a good health insurance plan, and access to drugs, and a good stable home life, and access to proper food. You can manage it and live a long, comfortable life. But we all know drugs are expensive, they can be toxic; I have friends whose hips are dissolving. And there are other organizations around the country are taking care of those who really can’t help themselves — people who are drugs users who are demented or so down and out that they just can’t get their act together, or have three meals a day to take their drugs properly. Those are the ones that fall through the cracks and that’s who we take care of. By keeping a roof over their head or giving them a little money for rent, we hope they can be stable for a little bit longer to get their act together and be able to manage their condition. There are so many issues that a cure is just a start.