Lean on Them ... and Each Other
Profiles of Two BP Support Groups and Their Volunteer Facilitators
Maybe you've newly been diagnosed as HIV-positive. Maybe you were diagnosed years ago, but are having problems with disclosure and other social situations. Or maybe you know someone who is having problems dealing with HIV-related issues. Whatever your circumstances, chances are that Body Positive offers a support group through which you can meet and share with others in your situation in a relaxed, safe, and confidential environment under the guidance of caring volunteer facilitators.
Some groups are on an enrolled basis, while others are open to people just dropping in. According to BP's Director of Volunteer and Client Support Services, Dana Levin, "with enrolled groups, there's a commitment to attend for ten to twelve weeks. The groups are closed; no one else is added during the course of their run. Each session lasts between an hour and an hour and a half. Members are asked to do a one-page intake form that's really simple, and giving their last name is not necessary. We set a tone of safety by explaining why the information is needed and how we keep it confidential, and most people comply."
Is there a pre-set agenda in an enrolled group? Dana explained, "There's no set curriculum, but there is a structure to each session. An enrolled group is often linked to a specific church or community group, so there's a commonality of interest to start out with."
Drop-in groups run a bit differently: for one thing, there are no forms or registrations in these forums. People can literally "drop-in" to any appropriate group, and stay for one meeting or come back every week. Unlike the enrolled groups, drop-ins require no commitment, other than adhering to the general rules of respect and confidentiality.
How many of these are ongoing? Dana said, "At most times we run four drop-in groups a week, a couple of enrolled groups, and then we have a unique group." This piqued my curiosity, so I asked her to describe it. "That one's a group for couples, and it's facilitated by a man and woman who are themselves a couple. So, in terms of both members and facilitators, it's different from any of our other groups. It's been running for quite some time."
The FacilitatorsWhere does Body Positive get its facilitators, I ask, wondering if there are any special requirements for the job. "They're all volunteers, and they have no particular experience," Dana explained. "We train them, and they're supervised closely, especially when they're new. Also, all groups are co-facilitated. We usually team an experienced facilitator with a new one to ease things along."
Facilitator supervision occurs twice a month, under Elizabeth Sloan, a Certified Social Worker. The facilitators are expected to attend and share their experience, getting feedback and guidance from Elizabeth and from each other. Dana and her colleague Tim Wearne attend every other supervision session, enlarging the scope of the meeting by talking about all issues affecting Body Positive. "It's very important that our facilitators feel connected to BP, and that they have the big picture. They need to know everything that's going on and be able to bring this to their groups," Dana said.
Tim Wearne, the coordinator of volunteer and client support services, handles the nuts and bolts of the Support Groups, and does most of the initial interfacing with the participants. When there are fifteen to twenty names waiting, Tim starts canvassing to get a group going. Next, Tim chooses two facilitators for the groups and ascertains their time availability. Once settled, he arranges for a room in which to hold the group, as well as a start date. Tim gives out intake information on all participants to the facilitators, and they call each person to greet them and set a comfort level before the first session.
Drop-in groups require less administrative work. Once formed, they tend to continue running as long as there's ongoing participation. Still, Tim needs to identify the need for a group and set up all the initial elements, minus intakes, as for an enrolled group.
In addition, Tim attends various outreach events within the HIV community to publicize the BP Support Groups. "We're always looking to expand the program," he explained. "Client-to-client referrals bring in a lot of new folks also."
"It's About Loving the Work"I next had the opportunity to speak with Keith Gellman, facilitator of the Gay Men's Group for the Infected and Affected, also a drop-in. Keith's been doing this work since June of 1997, and said, "I started with the desire to give back, but now it's just about loving the work. I enjoy meeting the people."
I asked Keith about the specifics of running his group. "There are two things that must be put out at the start of each session: one, to make sure that this is the group covering the correct issues for the people who are present; and two, to review the Body Positive ground rules of confidentiality, and agreeing to disagree. I tell people not to talk about group in public places, such as restaurants, because you never know who can overhear you and might know someone in the group. Also, I stress that everyone's entitled to his opinion, and if you disagree you must do it in an open-minded, respectful way."
Keith's group is composed mostly of mature, long-term survivors. Many say they come to "check in," that is, to keep or restore a sense of contact with the HIV community. The issues encountered are quite diverse, but Keith cited the top three as disclosure, dating and (unlike the Young Men's group) medications. "Meds is a more important topic for older people," Keith explained, "because they've been on medications longer. We also discuss sex and barebacking, although these topics, like disclosure, are more prevalent in the Young Men's group. But I'd have to say that the issue with most commonality, no matter what group, is dating."
"I started with Body Positive as a Helpline volunteer, for about six months," Keith told me. "There were bigger questions and issues then, but I didn't like not having a visual, a face to go with the voice. So I switched to working with the Support Groups."
Keith advised me that groups have been getting larger in recent times -- in the case of his group, particularly since it moved location to the LGBT Community Center and a larger, more comfortable room. He has between 15 and 22 participants at most sessions. "Smaller groups are more difficult because they want to focus on you," Keith observed, "whereas larger groups tend to run themselves."
"You learn from every session," Keith said. "Body Positive tries to make the groups a safe environment so that people are comfortable to express themselves. I stress that if you have a concern, speak up, it's okay -- and do so early in the session, so that we can address your concern in that session."
Keith concurred with my observation that, on occasion, the work might be emotionally draining, so I asked how he deals with that. "After each group, I do a 'post-mortem' with my co-facilitator," Keith said. "Then, I put it away until the next week."
The Couples GroupFinally, I got the chance to speak with Alan Cohen and Linda Susselin, co-facilitators of the unique Couples' Group. Alan began by explaining, "Any couples dealing with HIV, gay or straight, where at least one partner is positive, are potential participants. Currently, we're running with one straight couple, one lesbian couple, and three gay male couples." I asked if this would be considered an enrolled group or a drop-in. "Neither, specifically," Alan said. "Well, it's never a drop-in, but it's not like the enrolled groups in that there's no specific end date. The group just continues and evolves over time."
So what is the level of commitment for participants? "Commitment is emotional," Alan continued. "There's no signed contract, but the expectations are that if you start coming, you're going to remain in the group. When I screen new members, I ask them if they're going to be able to commit to come weekly, and not be limited by the normal twelve-week timeframe. If they say yes, they're in. Of course, sometimes couples show up for one session, find that it isn't for them, and don't come back. But the group is never a 'drop-in' in the sense that folks come once, skip a few months, then 'drop-in' again. Continuity is essential here."
I asked how this hybrid group got its start. "Linda and I had gone to the AIDS Walk, and saw a flyer from GMHC saying they wanted to start a couples group. We liked the idea, so we volunteered to facilitate it. However, over time, GMHC wasn't able to recruit enough folks to keep the group vital. One of the couples in the original group knew of Body Positive; Linda and I had never heard of them before. We went to the BP and pitched our idea, and they liked it. Next thing you know, we were up and running."
Linda's daughter is a member of the lesbian and gay community, living in San Francisco, and had lost a number of friends to AIDS. Alan and Linda started doing the AIDS Walk to support her daughter. At the time, Linda felt this was all she could do; then she saw that flyer, and in her own words, "this whole world opened up to us."
She continued: "When we started the group, it was right before the protease inhibitors became available, and expectations were very different. The focus in the early groups was mostly on 'how are we going to die, how will the surviving partner manage this?' Now, it's a question of 'how do we manage a chronic illness?' And that's a whole different perspective. We have people who've started second careers, because they quit their earlier jobs thinking they were going to die shortly. I've had people come up to me and say, 'You know, I never would have become an artist (or whatever) if I weren't positive.'"
Alan informed me that the current group consists of only one couple that's been there for several years, with all the others having been in attendance for one year or less. This creates a different balance, as it's a group of relatively new people. What are the issues that arise, I asked? Alan said, "Being in a relationship is difficult enough under any circumstances; but the issues are magnified by also living with HIV, so the 'normal' couple issues are just intensified here. Sex, money, the splitting of chores, medications, occasional illnesses -- these are what people need to talk about. The members of the group learn to communicate, and also how to deal with the potential or reality of being a caretaker."
Linda and Alan related some of the highs and lows of being facilitators. One couple, who'd been members of the group for a long time, moved to California a year ago. Recently they called to say that no same group exists where they currently live, and they miss it. On the other hand, a former member recently died, the first person to do so since the group started, and that was painful. But all current and past group members came to the memorial service given by the deceased's partner. Support levels remained gratifyingly high.
I commented that a sense of community must develop among the group's participants. Linda said, "In the early days, no one had any friends left; everyone had died. At the beginning of an early session, I overheard one person telling another, 'I'll bring the apple pie.' Then another said, 'I make good stuffing.' The group had decided to have Thanksgiving together. It was so moving."
"These days," Alan said, "the members enjoy it when we get new people. It gives them new ideas to share, plus they just like welcoming the new folks. And the sessions aren't always serious. You'd be surprised: there's plenty of friendship and laughter. People bring food as well as issues."
Both Linda and Alan love their work. "We get lots of rewards," Alan said. "One is simply that we've met so many wonderful people. Another is that clients often tell us how important the group is to them. And many times someone will say that they hadn't felt up to coming to the group, whether physically or emotionally, but came because they knew it was important to give support and encouragement to the other members. That's the best."
Linda describes one of her favorite experiences. "A heterosexual couple started coming to the group, and they hadn't disclosed their status to anyone in their lives; both were positive. After a while, they became so comfortable in the group, all gay at the time, that they said 'We've found a home in the gay community.' And they found the strength to 'come out' about their status to their friends and relatives."
If you feel the need to talk about HIV-related issues in a safe and confidential environment, a Body Positive Support Group is a good possibility to consider. Ongoing groups are listed in this publication; also, you can get information by calling Tim Wearne at the main number, 212-566-7333. Finally, if there is a specific type group you'd like, and it isn't currently being offered, let Tim know. If there are others who've requested a similar group, one can be formed.
Ronald C. Russo is a freelance writer and regular contributor to Body Positive.
This article was provided by Body Positive. It is a part of the publication Body Positive.