Creating a Vision of Hope in New Jersey: The Future Search Conference, December 11-13, 1997

Although many people think of the industrial scenery along the Turnpike when they think of New Jersey, most residents intimately know it by its official name, the Garden State. Lots of things grow there -- tomatoes, corn, and unfortunately, HIV infections. New Jersey is one of the states that refuses to support needle exchange as a method to help prevent the spread of HIV despite statistics that prove its effectiveness, and studies that show the economic advantages to health systems that adopt such programs. Conference participants came together to develop concrete plans for their state. Here's what happened.

On the Livingston Campus at Rutgers University, a buzz of conversation drifted from the audience as it awaited the presenters at the Future Search conference on AIDS in New Jersey. The audience was composed of board members of The Hyacinth AIDS Foundation, the first AIDS service organization in New Jersey as well as the sponsors of the event, representatives from a handful of pharmaceutical companies, such as Hoffman-La Roche, and outreach workers, volunteers and employees from various AIDS organization, such as Hyacinth, the Women and AIDS Coalition and the New Jersey Department of Health, AIDS Division.

No one gives formal presentations or makes speeches at a Future Search conference. There are no videos or alleged experts. As Ralph Copleman, a consultant with SearchNet (the company that organized the Future Search process) and the main facilitator of the conference explained, "You are here to deal with the fight against HIV and AIDS in New Jersey. We won't be following any prescribed steps or concentrating on any imposed conditions, but instead choosing a future path. The knowledge to take action is right here in this room already and these three days are about choosing actions that match your aspirations."

The audience members are the only participants; they are the presenters at the conference and experts at what they do, be it counseling gay men who have lost lovers, doing street outreach work, or presiding over a board of directors. All of these experts were in the same room, and their opinions had equal weight. Copleman simply made sure people stayed focused on the specific purpose of Future Search, which was to choose a future agenda for the HIV/AIDS community in New Jersey.

The Past

To begin the conference and stimulate conversation, participants were asked to recall the history of HIV/AIDS from global, statewide and personal perspectives. Then they diagrammed that history on a timeline spanning the entire length of the conference hall walls. The huge strips of paper turned into a colorful mosaic of magic-markered memories, from which commonalties soon emerged. For example, prior to the eighties, people remembered that "Sexual freedom equaled transmission of HIV" and "By 1979, college radio programs began reporting on the gay cancer." Most just never thought or knew about it.

AIDS came into focus for many of the attendees during the eighties, as evidenced by such statements as: "Rock Hudson and Liberace were diagnosed with AIDS" and simply "Quilt!" One person revealed, "It didn't concern me. I'm not one of them. Then friends start dying. Well, maybe I am." By the nineties, "Cocktails were introduced" and "Medicaid managed care took on the epidemic" while "Women were at the low end of the totem pole in research, treatment and education" and "NJ was among the states with highest rate of HIV infections." Another member of the conference revealed, "I began feeling as if I were at risk and I started working in the field."

Participants clearly saw the dynamism of the history of AIDS and how it had been addressed in the past. Dredging up old memories allowed people to gain a valuable perspective on HIV/AIDS and literally see that perspective as a history of their community unfolded on the walls. "People don't reach down deep about what they really want with strangers, only with people they trust, with people who will back them up," said Copleman. One member best summed up the feeling about the completed timeline: "Personal vulnerability in conjunction with the power of group identity. This timeline tells the biography of a generation." Participants noted that HIV/AIDS has changed and will continue to change. Uniting those with a common past was the first step in getting people to work together at the conference, and it was hoped that shared past would help secure a common future by the end of the event.

The Present

Day two of the conference brought all 100 or so participants together to identify current trends, positive or negative, in the HIV/AIDS community in New Jersey. This massive brainstorming session identified four of the most prominent trends: (1) a decrease in private funding; (2) an increase in life expectancy for people living with AIDS; (3) continued AIDS exceptionalism; and (4) an increased need for needle exchange programs.

The first two trends are linked: a decrease in funding combined with an increase in life span means less money for more people. Patricia Brady, a volunteer psychologist with Hyacinth since 1986, addressed the psycho-social issues that have come about now that people with AIDS are living longer. "I'm finding many people making the transition from dying to living. I have had people whose general physical well-being had deteriorated significantly, who then were put on protease inhibitors and began to develop energy, to re-engage in life. It sounds odd, but they made the existential shift from 'I'm fine, I'm an adult and I'm going to live until I get old' to the concept of 'I have an infection, I'm not going to get too old, I won't see my kids grow up, I'll never have to retire. I don't have to have these thoughts about the future.' Now all of a sudden that's all back on the table. Another issue," she added, "is boredom. People are well enough to do something but they can't jeopardize their disability. And just how much volunteering and hobby-type activities can a fairly well adult in his thirties or forties do? It becomes a life challenge."

A surprise participant was Mitch Golant from the Wellness Community, the largest support group in the country for people with cancer. "The collaboration between the Wellness Community and Hyacinth has come about because people with AIDS are living longer," he explained. "We base our services on a 'patient active' concept which means that if you participate in your fight for recovery with your physician rather than be a passive victim of the disease, you will not only improve your quality of life, but may enhance the possibility of recovery. We're looking to modify our program and apply it to AIDS treatment in terms of adherence, quality of life and survival in general. Another connection is that cancer used to have a social stigma attached to it, much like AIDS did or does. Furthermore, cancer used to be viewed as a death sentence. There are currently eight million people alive today in the U.S. with cancer."

AIDS exceptionalism is a continuing complex trend. Says Riki Jacobs, Executive Director of Hyacinth, "AIDS, from the beginning, was put into a different disease category, and that came about for a few reasons. It affects specific communities in such a concentrated way. People in the prime of their lives are dying, which is different than any other disease experience. So we advocated and tried to create programs to provide entitlements just for people with HIV. I'm not saying that's bad. I'm saying that it's been over a decade and we now have to plan to maintain HIV services and entitlements in a world that looks at AIDS differently. Collaboration among various organizations will be essential to avoid being pitted against one another, because lots of people with chronic disease have been given a raw deal."

The Future

Backed by a common history and armed with perspective on the current condition of the HIV/AIDS community in New Jersey, the participants set out to determine an agenda through the year 2010. The agenda had to include feasible visions which would engender personal comittments. Common themes emerged, but unanimity was required in order to solidify this agenda for the future and hold each person responsible to the vision. One dissenting voice could and did remove an item such as condom availability in public schools from the list.

At the end of the day the Future Search conference participants unanimously agreed to work toward:

• a collaboration among AIDS service organizations and other chronic disease organizations;
• changing with clients' needs;
• professional development of staff and volunteers;
• wellness, defined as "an holistic approach to the psychological, emotional, physical, spiritual needs of the client or community;"
• more effective political activism;
• the establishment of comprehensive services; and
• more intensive fundraising.

The purpose of the entire conference came into focus when attendees formulated how the agenda items were to be accomplished. People chose items on the agenda they felt most strongly about and to which they were willing to commit themselves professionally. For example, stakeholders in the political activism issue felt it necessary to clarify the most pressing issues. Advocating needle exchange immediately arose, which dovetailed with educating the clergy and legislators about the issue. Members of the group committed to work on position papers dealing with others issues -- such as immigration, entitlements and mandatory testing -- in order to unify their voices. Other concrete steps toward more effective political activism included gathering information about the changing political climate, approaching the business community, assuring the most representative group of activists, and assigning a leader for the group to whom members could report and who would assign projects. Long-term and short-term dates at which group members would convene and assess progress were also set.

Mortality

When participants delved into the past, they often remembered friends or family who had died of AIDS. However, death and bereavement, inexorable aspects of AIDS, were not addressed. Volunteer psychologist Patricia Brady offered an explanation for this. "Facing one's own death and grieving for others is important, and we shrink back from it as a culture. In this field we put ourselves in a position were we will feel losses and experience pain. And we do it by choice. The grief is there. We're even beginning to see some gay men who have lost many friends and have the classic symptoms of post-traumatic stress disorder -- nightmares, a closing off, a blocking out. People ask, 'How much of this work can you do?' And I say 'I don't know.' But I balance and have to know my limitations."

Mitch Golant of the Wellness Community also noted, "The fact is that people die of cancer. Still, the cancer community hasn't necessarily been better at handling death. It's not something culturally easy either. But the immediacy of death linked to AIDS has at least brought conversations about death more to the forefront. The issues around death have more to do with how you live your life. If we live our lives in fear of exposure and being stigmatized, then we die with a more profound sense of aloneness and hopelessness than need be. I think that if we concentrate on and talk about how we live, then how we deal with death becomes a natural outgrowth of that."

The Big Picture

While no one conference can alter the uncertain course of the future of HIV/AIDS, this particular gathering served as an exceptional start by bringing together people who would normally not be in contact. Board members and volunteers alike work for a common good, but rarely if ever get a chance to sit face to face. "It's nice not to have presenters and videos at a conference like this. I'm happy to be able to participate and have my opinions heard," said George Roomer, a Preventive Care Outreach Worker. Asia Russell, a Patient Treatment Advocate, agrees. "It's been a valuable attempt to develop an agenda for change. Campaigns for change and improvement can be chosen rather than just happen. That's why I'm here." In addition, people had three days worth of breathing room to gain perspective and actually meet the extended community in which they work. The participants, all of whom have been affected by the epidemic, saw, as well as felt and heard, that they were not alone.

Optimistically, personal and professional involvement in the Future Search conference will blossom into action and attendees will continue to communicate with one another. With some dates already set, there is hope for further collaboration. However, participants must stay focused on what they agreed to do individually and as a group: a concrete agenda created by and for a prepared, sustainable community in the fight against HIV/AIDS.

The Future Search conference was sponsored by The Hyacinth AIDS Foundation and facilitated by SearchNet. Neil Sachs is a Program Associate with Body Positive. For any further information about the conference, contact him at (212) 566-7333.

Back to the February 1998 Issue of Body Positive Magazine.