Conference engages young peer educators with the Ryan White legacy

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Tiffany is a twenty-year-old volunteer from Columbus, Georgia. Sitting in the lobby of the Renaissance Hotel, she toys with her cell phone while she waits for the rest of her group to join her.

She came to Nashville with a group of twenty other volunteers from the Extended Outreach Coalition, a non-profit group sponsored by the Columbus Wellness Center, a community based organization in the city.

Right now they’ve just finished a catered lunch in the ballroom of the hotel and will soon enough be making plans for the remainder of the day.

The group is made up of youth aged five (yes, five) through twenty-five that travels to schools, churches and other community centers where they educate other youth about the effects of healthy and unhealthy lifestyle choices.

“HIV is on the rise,” she says, about her hometown. That is why she’s here.

The 12th Annual Ryan White National Youth Conference on HIV & AIDS brought with it almost 700 young people from all over the United States for one weekend in Nashville, filled with presentations, youth directed plenary sessions and a night on the town.

“We’re going to the Opry mall later,” she says.

Rose, the director of the program, provides more detail to their organization.

“I’m not the leader. These guys are the leaders. They’re the ones we’re training to take over when we get too old,” she says with a self-deprecating laugh.

“To get the message out,” she continues, “we use drama, puppetry, step, miming, skits. Most of them are created by the kids. We have programs, youth programs, we offer counseling, emergency assistance, education, outreach. We have a male mentoring program, “Save Our Sons” that is successful. There’s a food pantry…”

Michael, the assistant director walks over. “We don’t advertise for volunteers,” he says. “We interview them just like it was a job. We try to make sure that if you volunteer, you’re gonna be committed. Most guys fathers are not in their lives. We provide a good healthy outlet for them.”

“It’s important that we attend conferences like this,” Rose says. “We get so busy that we can’t always keep up with the new information, the new recommendations for educating young people. There’ve been a lot of good agencies where people have been lost due to death or funding cuts. We try to stay on top of all this.”

“In our presentations, we’re really trying to bring in the faith based community now,” says Rose. “It’s community based organizations that pick up where government cannot.”

The Columbus Wellness Center (“make sure you write ‘Georgia’ not ‘Ohio,’” I’m told) is partly funded by the Georgia Department of Human Resources, the Department of Health Services and private donations.

Tiffany is lost in the gaggle of young people she came to town with. They wander around the area, possibly wondering where they’re headed after this interview, some intently listening to the conversation, realizing why they’re here. Others know this is free time.

Ryan White’s mother, Jeanne, was the speaker at the luncheon today. She gave an impassioned presentation, walking us all through the life of her son. The crowd laughs when she recalls scolding her son for not mentioning Elizabeth Taylor’s name as a celebrity he was eager to meet, Taylor being one of the very first celebrities to publicly offer support to those with HIV.

Many in the crowd weep along with her as she shares intimate moments between her and her son, like the time he simply thanked her for being there for him, or when Michael Jackson told her that Ryan was one of the very few people who understood how alone he felt (she’s offered her support and understanding to the pop star during his current crisis). The crowd claps loudly when she tells of how her Christian faith originally informed her about homosexuality, but her experience with gay men (them being her only allies at times) was what truly educated her.

Jeanne is in a small meeting room now. It is a Q&A session with a population that, upon my arrival, is small in number. Each participant takes his or her turn sitting at the head table where Jeanne is eating lunch. It’s one of those typical catered meals: chicken tenders, green string beans, mashed potatoes, tea or coffee.

I overhear her speaking with two girls – Toni and Amber – from the Titans Teens, a group supported by the South Mississippi AIDS Task Force in Biloxi.

“He got AIDS before he went through puberty so he never grew,” Jeanne says about Ryan. It’s those small, interesting details like this that may never make it to the formal presentations. “He had to drive sitting on a pillow,” she adds. “He hated that … until he went to Hollywood and met people like Michael J. Fox. Then, he felt better.”

The girls giggle.

“They have medications now for kids when they reach puberty so they can grow,” she says.

Toni asks what kind of advice Jeanne can offer peer educators like them.

“Do either of you have AIDS?” she asks. Jeanne tends to not differentiate between HIV and AIDS so methodically, the way most educators and health professionals tend to do. The girls shake their heads.

“Have you lost anyone to AIDS?” she asks. Amber says she knows someone who may not live long with the disease.

“You need to share the personal stories,” Jeanne tells the girls. “I can’t stress that enough. Tell the stories about the people you know who have HIV. About how they touched your life. With those stories, you could be doing something to help them.”

“It will help you too,” she adds. “You’ll feel good about it.”

Jeanne White-Ginder was separated from Ryan and his sister, Andrea’s father long before Ryan contracted the disease in 1984. She says her ex-husband was not best equipped to handle the media firestorm that enveloped their lives in the 1980s.

Remarried now, she lives in Florida. Andrea is a school teacher in the same town. “I live a normal life,” she says. “My husband works in a body shop! My hobbies include scrap booking, gardening. I’m an everyday person!”

When she first began public speaking, she traveled mostly to high schools and colleges (“I know I spoke at Vanderbilt once,” she says. “I know I’ve been to Nashville before”) but now that the urgency of HIV awareness and the collective memory of Ryan has waned, she finds herself speaking mainly at nursing and social worker conferences. Every now and then she’ll be invited to a youth conference like this one.

There is a difference between the presentations she shares with the medical establishment and the one she shares with activists. Going back fifteen years now, certainly the design of the presentations will have been tweaked and adjusted.

“When I speak in front of all those doctors and nurses,” she says, “I feel inferior. But what I’ve learned from them is that physicians and nurses need to see a family members’ perspective. They need to learn so they can deal with families better.”

“At colleges and high schools,” she continues, “it’s more an educational effort. I try to relay the message more. The message there is prevention and not to discriminate.”

“With church services I talk about guardian angels,” she says. “Ryan was so intelligent! We were feeling sad one day and Ryan said to me, ‘I don’t wanna die either but He’ll take me when it’s my time to go.’ He was so young and yet so wise.”

I ask her how her daughter coped with the pressures her family faced while Ryan was alive, in the shadow of the media circus.

“She could tolerate the kids,” she says, “because she knew they just needed to be educated. She hated the media, though!”

“I tried to keep her involved in skating,” she adds. “Andrea was a talented skater. I made sure, every now and then, that I could go on meets with her for the weekend. Ryan would stay with Mom. It was hard to do financially, but Mom and Dad helped, my ex-husband helped.”

“We tried to balance them and their interests,” she says about her children. “I’m not sure if it was done all the time, but we did have quality time then. That’s a pretty good point,” she’s speaking to herself, picking up her pen.

“I’ll have to mention that next time.”

So the presentation will change again. Her experience then, along with the life she leads now, proves how invaluable memories are, how new contexts can shed light on old events. Make no mistake about it, Ryan will always be with her.