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.
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
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
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).
Our historical core activities of support groups and socials
have declined to 10-20% of what they were two years and more
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
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.
We have a rich history, based on a powerful idea, of PWA
self-empowerment and mutual support. (See the Denver
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.
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.
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
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
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
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