It is no surprise that AIDS is a deadly, frightening disease. Every twelve seconds another person contracts AIDS, and every sixteen seconds another person dies of AIDS. Yet, AIDS education isn’t a part of school curriculums. AIDS testing isn’t required for bath houses or sex clubs. The negative stigma surrounding the immunodeficiency disease is still alive today, preventing us from moving to a more educated, less bigoted and fearful, environment. “Six-million Jews were killed in the Holocaust; twenty-five million people have been killed by AIDS,” says World AIDS Museum Manager, and twelve-year AIDS survivor, Ed Sparen. “This is an epidemic.”
The mission of the World AIDS Museum is simple: Increase awareness and decrease the stigma of the HIV/AIDS epidemic by documenting the history of HIV/AIDS, remember the people who have suffered from the disease, educate people about HIV/AIDS, enlighten the world to this continuing tragedy, and empower the survivors. That mission begins with the founding of the museum itself, brought on by the AIDS support group, POZitive Attitudes. “As opposed to a support group where you help your fellow man,” says Ed of the group, “they come here and they help out every man. It’s giving them a place to be.”
The people who volunteer their time to keep the World Aids Museum running, such as people from POZitive Attitudes, hope to accomplish their mission, first and foremost, through education. “I think the stigma that surrounded AIDS when it first came to public knowledge is the same today,” says Steven Stagon, founder of the museum and leader of POZitive Attitudes (www.POZitiveattitudes.com.) “When we were looking for a place to open the museum, we looked at other places outside of Wilton Manors. And when we told them what it was for, they wouldn’t call us back. The stigma exists.” Educating people further about the disease and destroying the negative stigma that surrounds it is paramount to the fight against the disease itself.
In order to raise awareness and bring more people into the museum to be educated, Ed and Steven are putting together events for the whole community, such as movie nights and museum mixers. By bringing people together, they hope to begin to break down the stigma, as well as make people aware of AIDS as more than just a disease.
“I have had AIDS for twelve years,” Ed explains. “I am in perfect health otherwise, and I can live a normal life. People need to realize that this is possible.” Ed goes on to further explain the reach of AIDS, and the museum: “We need to reach past Broward County, into Miami-Dade, all the way to Chicago and Oprah if we have to because it’s not just a national epidemic; it’s an international epidemic.”
The museum is filled with an AIDS timeline depicting the history of AIDS. The timeline explains that the first case of AIDS actually was in 1908, as opposed to the 1960’s. Much like the Bubonic Plague spread through rats on ships, AIDS spread through the bites, and digestion, of certain monkeys carrying the disease. The timeline also depicts current events happening simultaneously as major AIDS events, such as the creation of Cabbage Patch Kids, or the assassination of John Lennon. It provides context and a sense of reality to events that would otherwise seem too heartbreaking to imagine.
“The event that stands out the most to me,” Steven says, “was when the President of South Africa told the people to break the silence about AIDS. A woman went on national television and announced that she was HIV positive. Her neighbors then beat her to death. That really stands out for me.”
Also on the timeline is a story of eleven-year-old Nkosi Johnson, who gave the opening speech at an AIDS conference in South Africa. “It was so heartwarming,” says Steven. In fact, his speech was so moving, they created Kami, an HIV positive character on Sesame Street in South Africa. Her name is derived from Kamogelo, which means acceptance in Setswana, and is exactly what Nkosi’s speech was about.
“I’ve lost so many individual people. To me, it’s about the people,” Ed says of the events that stand out the most in AIDS history. It is impossible for all of their stories to be told on the museum’s timeline, as many are. However, they are remembered in the Names Project – an AIDS memorial quilt that is currently stored in a warehouse that is over two million square feet. “The pieces of the quilt are three feet by six feet,” Ed explains, “The size of an average coffin.” The people who have died of AIDS are immortalized on the patches of this enormous quilt, remembered by all who see it.
This non-profit museum in Fort Lauderdale, Florida runs solely on generous donations, such as those from Magic Johnson, who dedicated the museum during its Grand Opening. In the middle of the museum stands a pillar devoted to Magic Johnson’s signed jersey, as well as the many people who have made this museum possible.
Looking to the future, Ed and Steven both agree that they hope they can someday say that a cure has been found for AIDS. Regardless, they both agree that the World AIDS Museum will remain open to educate future generations about this tragic disease and those that have suffered, and survived, through it.
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World Aids Museum
Aids-ucating, Enlightening and Empowering
Written By Jordi Burton