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Being Alive

From the President of the Board: "Where Do We Go From Here?"




 

Being Alive 1998 May 5: 2

Over the years, there have been many essays in the Being Alive Newsletter that have reported on the state of this unique organization. I would like to offer an update on the very serious crisis affecting Being Alive today. I would also like to ask our members the following questions about our future: What course of action do you feel Being Alive should be taking? Is our self-help concept out of date? What can we do to encourage volunteerism, among our members, our board, and those ex-volunteers who once gave their invaluable time and energy to the organization? A Wake-Up Call We had a wake up call during our Board retreat a few weeks ago: we discovered that we need to implement some serious changes if Being Alive is going to continue to exist.

I cannot speak authoritatively about Being Alive's business history prior to the spring of 1997, when I joined the Board of Directors. A lack of documentation makes it difficult for those of us who joined the Board in 1997 (eight out of nine) to provide answers to events prior to that time. (Any questions you might have about the past should be addressed to former Board President Walt Senterfitt. I understand he is writing an open letter to the Board, which I have not seen as of this writing. Perhaps some answers will be in that article. I would be interested in some of our business history.) Ferd Eggan has written an article on the future of Being Alive (click here to read his comments) which does a great job of stating our dilemma. From its inception, Being Alive has been and continues to be a "self-help" organization for people with AIDS and HIV. Of course, "self-help" means different things to different people.

The grassroots self-help concept behind Being Alive is what compelled me to become an active volunteer four years ago. The idea of infected people helping others who are also infected just seemed so right. That's what our founders, Rick Ewing, John Mohr, and Ron Rose, intended.

Over time, we acquired grants and developed the "Spirit of Hope" to generate funds. And as time passed, it appears to me that the Board became less and less grassroots: that is, the Board members engaged less in direct, shoulder-to-shoulder, face-to-face work with the membership and volunteers, to help do the work that needs to get done.

To survive, Being Alive will need to go back to being a grassroots organization where infected people volunteer time to help each other, and where the programs we offer reflect our self-help mission.

During the past 18 months, we've lost many volunteers. Some of our support groups have declined in number. Many people still come for transportation and to pick up meals, but our volunteers, the backbone of any self-help organization, are no longer coming back in sufficient numbers, despite the fact that we still have plenty of people to serve, who need our services. Government and private funding are shrinking, but AIDS is not over! Where do we go from here? Is there still a self-help volunteering drive among a sufficient number of people for Being Alive to function? It's obvious that the needs of people with AIDS are still not adequately met, despite the new drugs. Perhaps there is complacency or just plain burn-out among us. I know I experience burn-out from time to time. But I hope many former volunteers and new volunteers will take up the challenge to help one another.

Feedback Needed from the Members We need feedback from our members on what course to follow. Is there still a need for a self-help PWA organization in Silver Lake? We also need to know what unique services are needed by our members. We need to focus on doing those well and not taking on more than is manageable. I do not believe we should continue to exist if we are simply going to do the same things already being done at APLA, the Gay & Lesbian Center, or other agencies that serve people with HIV/AIDS. The duplicated overhead costs truly waste AIDS money. We must focus on using the money Being Alive has now to provide valuable and necessary services to people who are infected with HIV.

Some Decisions on the Future A few decisions were made during our March Board meeting: * Being Alive will move to a smaller, more affordable site; * We will forego an independent audit; * We will decrease spending in as many areas as we can; * We will undertake a complete review in July to determine if we should continue as a smaller independent organization, merge with some other organization, or close.

(One proposal made at the March Board meeting was to prepare a shut-down plan, close the business, and relinquish all grants within 90 days. The Board rejected that plan. While such a shut-down plan might seem the path of least effort for the Board, I think that such a course of action would be neither responsible nor compassionate to our members, volunteers, staff, and grantors.) A Challenge to the Board Members For Being Alive to continue, its Board of Directors must become more grassroots: we need to become a working Board, not a meet-once-a-month Board. Our Board members also need to become involved with fundraising, which some Board members are loath to do. Traditionally, nonprofit agencies offer two alternatives to Board members: Board members can either donate their own money or they can volunteer to perform some of the administrative work in lieu of paid staff.

There are five of us on the Board who are willing to chip in and help do administrative work. We cannot do it alone. The others are too busy or have other reasons for not joining in. I can only hope they will accept their fiduciary responsibility and help.

I have been a Board member for less than one year and have noticed a lack of focus by the collective Board on helping the membership. Too much attention has been given to individual Board members' own concerns, too much energy has been expended on in-fighting. I sincerely hope this will stop. One of the beautiful things we do at Being Alive is to provide help to people while allowing them to keep their self-respect and dignity while receiving help. As a Board, we will do well to remember that we, too, are a group of mostly infected people who deserve to be treated with dignity and respect-and not abuse those who don't necessarily agree with us.

More than that, our Board needs to participate and help those who are doing the work. Isn't that what self-help is all about? Being Alive is unique: we are the only organization managed of, by, and for people living with HIV/AIDS. We're not afraid to politically advocate for people living with HIV/AIDS. We have the courage to say what needs to be said without fear of retribution from those in the establishment who dread the truth about the ongoing pandemic. We need to ensure proper treatment is forthcoming from doctors and medical personnel, and that sufficient resources are mobilized on all fronts to assist PWAs.

A Challenge To All In this part of Los Angeles (Silver Lake, East L.A.), where so many minority members are at risk from HIV/AIDS or are already living with the disease, where not everyone has access to affordable transportation and poverty is unmistakable, can we truly turn our backs not only on each other but also on others in need? How many members have we helped over the years for whom Being Alive truly was and is "the last house on the block"? A great president once said, "If a free society cannot help the many who are poor, it cannot save the few who are rich." If Being Alive cannot fulfill its mission to help the disadvantaged, what does this say about our life and times as people living with HIV/AIDS? Are we, as PWAs and as an agency, truly too poor to get well? The Being Alive Board of Directors and staff need feedback from those who are our members. We are simply caretakers of this organization. We need your help. What course of action do you feel we should be taking? Is the self-help concept out of date? What can we do to encourage volunteers to come back and help? We will keep members updated on the changes via our Web Site, this Newsletter and notices at our facilities. Send your comments any way you can: Being Alive's mailing address is 3626 Sunset Boulevard, Los Angeles, CA 90026. Cyber-friendly? Send your feedback via email (BeiAlive@aol.com).



 




Information in this article was accurate in February 5, 1998. The state of the art may have changed since the publication date. This material is designed to support, not replace, the relationship that exists between you and your doctor. Always discuss treatment options with a doctor who specializes in treating HIV.