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Being Alive
An Open Letter to the Being Alive Community
Walt Senterfitt
May 5, 1998
SO Being Alive 1998 May 5: 8

I have been active in Being Alive/LA for more than eight years and am currently a member of the Board of Directors, the Newsletter staff, and a new advocacy project, the HIV Consumer Report. The organization has been through many changes and ups and downs over its 12 year history as has its constituency-people with AIDS and HIV in Los Angeles. So in a sense, the current struggles to pay staff salaries and rent, to recruit a new executive director, to adapt programs no longer meeting the needs of many people, are not new.

However, I believe that the world of HIV/AIDS in Los Angeles, the needs of people living with this infection and the funding environment for programs, have changed drastically in the past two years. The community, the AIDS service organizations, and care and prevention providers have failed to assimilate and react creatively to these changes for the most part, though we have all tried to do so in one way or another. Being Alive, like most organizations, does not "do" drastic change very well. I believe that if we do not respond now very rapidly and creatively, then we as an organization (and not we alone) will die fairly soon, and it will not be pretty.

On the other hand, I think that a radical redirection of the energy that is Being Alive can be a good and empowering thing-for us as individuals, as an organization, as a community of infected and affected people. I ask you to listen to these arguments and suggestions, and then respond with comments, opinions, new and better ideas. Being Alive Board meetings are open to everyone, as are the pages of this Newsletter, the e-mail inbox and the Web Site and the volunteers and answering machines at the office.

Premises The coming in 1996 of newly effective antiviral therapy has changed things drastically. There were 56% fewer AIDS-related deaths in Los Angeles County in 1997 than the year before. More than 31% fewer cases of AIDS were reported, a ten-year low. For the first time in 1997, there were more new cases among Latinos than among Anglo whites in the county, the drop among women was only two thirds of that among men and the drop in new cases in whites was more than twice that in Latinos, blacks or Asians and Pacific Islanders. Such a sharp one-year drop in AIDS cases is mostly due to successful action by combination therapies begun before one has progressed to an AIDS diagnosis. The even more dramatic drop in deaths is due to the power of these drugs to extend the lives of thousands of people who already had AIDS. The fact that there were still 2400 new AIDS cases and more than 1000 AIDS deaths in 1997 is proof plenty that the new therapies are not a cure, come too late for many, and do not work for all.

These and other recent changes have implications for every AIDS organization. For Being Alive, the changes with fundamental impact include: An initially gradual, then sharp reduction in the "pipeline" of people whose skills and background predispose them to needing, supporting and running a volunteer-driven organization, based on mutual support, information exchange, socializing and advocacy.

A much smaller conscious constituency ready to be "empowered" or to be represented in advocacy, as indicated by how few members of Being Alive (or any other organization) have been able to get to any meeting in the last 18 months. This is emphatically not to say that the need for empowerment and advocacy is any the less (in fact it is greater), but it takes much more organizing, of different sorts, and overcoming many additional barriers to do it among people not accustomed to winning anything through advocacy and collective action.

Funding sources generally do not support such intensive community organizing, but rather fund in the main services to clients, rather than empowerment of members. The provision of services as the central function of an organization over time almost inevitably leads to the increasing reliance on professional staff rather than volunteers and the gradual accretion of bureaucracy.

In the main, PWAs presenting for "services" at Being Alive have a variety of needs and life complications beyond HIV infection, many of which cannot be met very well by Being Alive's volunteers or small staff.

Over the years, many new organizations have arisen that reflect particular communities and populations of the affected communities, for instance, African Americans, Latino/as, women, Asian and Pacific Islanders, residents of the Second Supervisorial District or Santa Monica and the West Side of L.A. Established organizations have begun programs that duplicate or compete with what Being Alive once did almost uniquely, such as conduct support groups, run a speakers bureau and publish newsletters.

Private donations are drying up at a rapid pace, and the competition for what remains is sharper. For Being Alive they have almost entirely dried up and starting new campaigns at this point is unlikely to be successful in any large degree.

Public funding for what we do will shortly begin to dry up as well. The federal government has already determined that medical care and life-saving drugs are the best way to spend its AIDS care dollars, and all ancillary services will have to be linked directly to medical care. Even now, the funding is for services, mostly, not advocacy, and comes with lots of burdens and requirements (such as the new requirement effective April 1 that any person receiving a Ryan White-funded "service" at Being Alive must have a "diagnosis letter" on file).

Current Weaknesses Our historical core activities of support groups and socials have declined to 10-20% of what they were two years and more ago.

Our flagship informational and educational organs have been ceded (Medical Updates to APLA), gone to an independent organization (Women Alive and Ecos Femeninos newsletters and updates) or rely on a small, highly-skilled and experienced volunteer cadre whose energy and dedication to one very demanding project will not last indefinitely (Being Alive Newsletter).

The separation from Women Alive, whether one regards it with sadness or relief, has meant the loss of dynamic and growing programs, an internationally unique aspect of the formerly combined organization, and a strong appeal for many funders.

As we have switched to service provision, our different history and small staff have handicapped us. Despite talented and dedicated staff and small volunteer core, we are a minor service provider from the perspective of the larger community, and the staff is constantly called upon to fill the gap rather than organize new self-help programs.

We are damn near broke and there is no rescue on the horizon.

Current Strengths We have a rich history, based on a powerful idea, of PWA self-empowerment and mutual support. (See the Denver Principles.) We have shown the ability to begin new member-initiated, volunteer-driven projects with wide appeal, such as ELLAP and the HIV Consumer Report. Certain of the remaining support groups are quite vital, as they fulfill clear and specialized needs, such as those for newly diagnosed persons, grieving survivors and "sero-discordant" couples.

There is a substantially new Board, with room for other new members with new ideas and energy.

There is still the need, as much or more than ever, for an independent, unaffiliated voice of and for people with HIV/AIDS, where the "tribalisms" can be put aside for a moment, and what unites us can be accentuated and expressed.

Conclusions As presently constituted, Being Alive has a short life expectancy. To pretend otherwise and struggle to stay afloat on the present course or develop new "services," will most likely just demoralize staff and key volunteers who remain-as well as our circle of warm supporters in the larger community.

Proposals I propose Being Alive consider one of two courses, either of which in my opinion could be workable and powerful in impact. I am sure that there are other equally valid proposals to be made. Let's just be sure that anything proposed is within the capacity of our current organization and its friends.

1. Go out with a bang! Acknowledge all of the above and decide that Being Alive should simply, and consciously, go out of existence-but with a process of public events and messages that provoke discussion and action in the larger HIV/AIDS community. That would include making some strong policy recommendations, statements of our collective needs, a couple special issues of the Newsletter, suggestions and assistance to folks who want to take up some parts of our work and/or legacy. We would of course arrange orderly transfers of contractual obligations, and help all staff make a satisfactory transition.

It is neither a defeat nor a renunciation of principle to acknowledge that a particular organization or even an organizational form has run its course, at least for now. In fact, it is more honorable and constructive to recognize such things forthrightly and release the remaining energy for new forms.

2. Re-organize drastically and focus simply on advocacy, information, organizing, occasional specially produced social events and holding AIDS service providers accountable. Give up the Silver Lake building. Support perhaps one staff coordinator (even part-time if necessary) and others only if they can be funded as community organizers, not service deliverers or administrators.

Otherwise, return to being a grassroots, all-volunteer organization with a small office. Hold informational, political and social events in other venues. Enter into specific, ad hoc coalitions or joint programs with other organizations as appropriate. Help make the history and accumulated skills of PWA self-help and self-empowerment available to those in specific communities who wish to adapt and perpetuate them in different ways.

Being Alive has always had the courage to be honest, to speak its mind as an organization of and for people with HIV/AIDS, to do what is necessary. Let us not bunker down in denial, but set an example for the community of organizational change in the face of material changes in the world of AIDS. Let us let go and let new life sprout. Let us continue, together, to make a difference.