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Stigma

Meet the Curator of the History of AIDS

AIDS MUSEUM

Ed Sparan runs The World AIDS Museum — the only one in the world — and dreams of expansion.

Visiting the World AIDS Museum and Educational Center in Fort Lauderdale is nothing short of a wow experience. That may not be your first thought, but what they’ve done there is nothing short of spectacular.

Last fall, legendary HIV-positive Styx bassist Chuck Panozzo got real about living with shame and HIV — and publicly urged friends, family, and fans to join him in supporting the education and stigma-busting work of the Museum.  Panozzo said that, during a trip to the World AIDS Museum, he finally “confronted my fear and found a tremendous freedom in doing so. Along with this came a learning experience, and I became more aware of who I am and what I can do to change my feelings.”

Plus went to the museum and spoke to Ed Sparan its  curator.

After growing up in Connecticut he went to New York, “I was an actor in New York City in the 80s. I lived in Greenwich  Village—I am proud to say I am an Greenwich Village homosexual from the 80s.”

Sparan recalls what he saw during that time, which was the height of the plague years. “I saw the highest of highs and the lowest of lows. Working in theatre and living in the village you saw a lot of great times, but you also had a lot of sad times, painful times but we got through it.”

Sparan moved to Ft. Lauderdale for 24 years ago and quickly became active in the community, as an artist and activist. “I went to a support group one night and they were talking about opening up a museum and I offered them some artwork for it: HIV-positive focused artwork. From that point I got involved producing events, fundraising, and then joined the board.”

Sparan’s been involved since the beginning of the project but as they moved from the idea stage to executing an actual museum, he became chief operations manager. Sparan handles the daily operations, tours, education, and all the inside aspects. “Hugh Beswick  is our CEO so he’s handling the business end of things and the grants.  His background is in business and mine is in the art world, so we work well together to create the projects and events to keep it alive.”

It’s mind blowing how much they fit into the museum and its presentation. In the main gallery is the permanent exhibit  “The history timeline of the HIV/AIDS epidemic.”  The exhibit shows the origins as a monkey virus as far back as 1908. The story takes you through the struggles in the 80s,the  changes in the 90s and the hope and future with today’s medications.  The museum began as an idea from founder Steve Stagon.  He is the facillator  of a support group  called “Pozitive Attitudes” and this is where the idea of the museum began.

By the time Sparan and his team got to the point of displaying the exhibit as a  more multi-faceted experience.  “Steve got some people from the group to be on the board and fundraising began and in just a few years we had enough community support to create a brick and mortar museum. The only one in the world.  A creative team was put together to create the museum. Steve had the factual timeline information, Greg Nye is a film script writer and he helped refine the story.  Artist Tyler Smith created the ‘Jackson Pollackish’ exhibit displays.”

 

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Fund raising for the museum is still a challenge. Sparan thinks fund raising for HIV today is difficult because the culture has changed around how people think about HIV. “People don't own it or embrace it like they used to.”

Sparan believes most poz people don’t think about their HIV status, “besides the first 15 minutes of their morning—when they’re taking their pills.”

Sparan recognizes this as a positive development. “I think it was around 2000 I woke up and realized wow it's different than it used to be.  I also think a lot of people stopped donating because less and less people are dying from it, which is directly associated with better medications and treatments, but still there's not the urgent call to action that there used to be.”

Education and Outreach

Sparan is concerned with the significant spike among 13-24 year-olds. “It’s tough because every city, county, town, region, is a little bit different. However since the epicenter of the epidemic is here in South Florida, “the Centers for Disease Control (CDC) gave grant money to the school board and they pay us to go in and do our education program in the schools in Broward County.”

The museum has two programs: one regarding HIV/STI education. “We talk about infections and HIV education. We talk about condoms, PrEP, and give them everything they need to know in a 90 minute power point presentation. We also work a lot with The Broward County School boards  DPI, Diversity, Prevention and Intervention Department.

The BCDB  DPI  division of the school board handles LGBT issues, bullying issues, and also teacher-parent communication and education. They also  have a 90 minute presentation called Stigma. “That’s really what educating is all about. If you are fearful of the dentist you don't wanna go, just like if you're initially scared of big dogs. Once you go to the dentist, or once you pet the dog you no longer have that original fear. We want to get rid of that fear.”

“Stigma seems like a big word but fear is the little word that it really means,” he continues, “But kids are more fearful of getting—or getting someone—pregnant. They're not scared of contracting an STI or HIV. Sparan feels that mindset needs to change.

“We have to erase those fears, and the misconceptions. At the same time though give them the information, the facts and choices. We can’t tell them what to do but we give them the facts, info, and knowledge. Our programs are called In Control in essence letting them know that they are in control of their actions and lives.”

Sparan’s efforts have reached over seven thousand kids to date.

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Stories and keeping the history of the epidemic alive is what keeps Sparan going.

Bars are a place where people from every walk of gay life can be found in South Florida. “One night, everybody was partying and cruising and having a good time, and I start talking to this guy. “After a while he starts to cry and he starts to tell me his story.” The man rolled up one of his sleeve’s cuffs which covered the scar from where he tried to commit suicide.

“While everyone else in the bar is having a good time I got this guy in my arms crying and I said ‘you get your ass to me tomorrow as the museum. We'll get you a support group, a better doctor, and get you what you need.’”

For Sparan these little moments and epiphanies happen nearly daily, and “It’s tough. It not easy to do what I do sometimes, but I love what I do. It's really little stories like that one that shows how much of an impact and difference you can make.”

One of the communities the museum does a tremendous amount of outreach to is the trans community.

Reaching the transgender community was an urgent priority, so they tackled it with an exhibit that came about through Talking Tea. “Tea is the transgender support group.”  Working with them, Sparan created an exhibit called Heels and Ties to Heaven. “Basically we went to the thrift store, got high heel shoes, and we decorated them into fabulous shoe sculptures. We also got ties that were decorated. The beautiful thing about it was artists didn't just do it. Everyday people came in. We set up some tables here and people got paint and glue on their hands. They didn't just sit around and talk about it, but created it. The talked about ideas, and made something with their hands to educate. The exhibit is beautiful, we got the shoes and you can come in and see the artwork, but along with that we created a small video.”

Sparan spent time with local members of the community about how both being HIV-positive and transgender have similar stigmas. So they produced a simple video explaining the similarities, the shame and fears associated with it.  “For example if you're trans and on HIV meds you're going to be concerned if they are going to interfere with your hormone replacement therapies/medications.”

Working with the new trans support group, Sparan learned about so called “Pump Parties.” Sparan explains that many people that want to have the operations for transition can’t afford it, so a less expensive way is to go to these parties.

“Basically they go to a hotel, or party location somewhere and they get basic silicone injections—the kind you can buy at Home Depot. They get injections into their butt, boobs, cheeks, done by a non-professional, with substances they can buy.” Other substances include saline, but they’ll often use the basic silicone you use for window caulking.  “So even if you don't get an infection from the instruments or how they're doing it you're now wearing window caulking in your butt, and it’s neither safe, nor healthy—end of story.”

Sparan adds this to the litany of problems faced by the trans community including being forced into sex work. “Trans people living with HIV are having their moment, and it’s a big deal right now. They have their own individual stories and we try to both support them, and get them heard.”

 

What the museum really need is more money and man power.

“If we had more money and people on the ground, we could do more things.” The museum began its education program in Broward county schools two years ago, and they are preparing to expand into the tri-county area. Soon he hopes to take their initiatives to the next level including neighboring Miami.

“Every single person that comes in here has a wow experience so we have to get as many people as we can in here. We have to dispel the notion that this is a sad place, cause it’s not. This is a place to contemplate and learn.”

The Museum is not a sad place but an optimistic one.

Everyday there’s new information to get out: breakthroughs like PEP, PrEP, and new treatment therapies. “Since we started our mission—that I think we've executed flawlessly has been: document, remember, educate, enlighten, and empower. We collect all the information and archive it. We remember through the stories, the timeline, and teach and empower through education.”

 

They not only educate in schools and with youth, but in prisons, nursing colleges, “we will go anywhere they want us to speak.” Everyone ends up leaving knowing more and that leads to empowerment. “We get so many long term survivors who’ve lived with this nightmare for 30 or 35 years and they come in here are happy to find that their fight wasn’t for naught. It really uplifts them.”

“People ask me why were way down here [in Ft. Lauderdale] and it’s because we are at the current epicenter, but we want to spread to all around the world—that’s the dream.” Of  all brand newly infected people  with HIV  Miami Dade is number one, Broward County is two, and Palm Beach county is sixth in the country.

When Larry Kramer came down to visit and speak at the museum, he told Sparan, “This should be in every town in the country," and “he's right there should be an HIV educational center in every city.”

The museum’s goal is to tell the comprehensive global history of HIV/AIDS and how it’s impacted the world. “Not just the 35 year history in this country, but what happened prior to that and where we are going next. Since 1980, 39 million have died of AIDS, and 35 million are living with HIV. So if you add those numbers together that means close to 75 million total since the beginning of the epidemic.” That’s more people than died in both world wars combined.

Sparan pauses seeming to solemnly reflect of what he’s experienced, then his phone chirps and his eyes light up. Sparan looks up and smiles. He’s got to go and prepare for a skype meeting with a group of high school students. “They're from rural Kentucky.” he adds, smiling.

The work never stops, and neither does Sparan.

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Savas Abadsidis

Editor

Ryan is the Digital Director of The Advocate Channel, and a graduate of NYU Tisch's Department of Dramatic Writing. She is also a member of GALECA, the LGBTQ+ society of entertainment critics. While her specialties are television writing and comedy, Ryan is a young member of the LGBTQ+ community passionate about politics and advocating for all.

Ryan is the Digital Director of The Advocate Channel, and a graduate of NYU Tisch's Department of Dramatic Writing. She is also a member of GALECA, the LGBTQ+ society of entertainment critics. While her specialties are television writing and comedy, Ryan is a young member of the LGBTQ+ community passionate about politics and advocating for all.