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Tsk, Tsk: People with HIV are being disempowered in ways they don’t even know

After recently shifting my focus after 10 years of working with non-profit HIV and mental health social service organizations, I’ve been reflecting on both the positive – and negative – things that I witnessed. With the re-election of President Bush and a Republican majority in Congress, social services and other “liberal” institutions are certainly out of favor and have come under fire as a low priority for the American public and taxpayers. It’s too bad, because poor people who are living with HIV need the services of these organizations and related benefit programs like Medicaid, Social Security, Medicare, and state/local General Relief programs very badly to survive and receive the basics of food, clothing and shelter. They need our support. Too bad, then, that so many of my memories of working in various organizations are marred by recollections of seeing incidents of graft, corruption, and wrongdoing by the administrators of some of these organizations.

Certainly, there are many dedicated professionals who staff these organizations who deserve a medal for their valor. However, there are also some scoundrels out there running the show, and people living with HIV in cities across America don’t even realize they are being disempowered in ways they never see. One of the key components to coping with HIV (a key concept in mental health is “coping” with life’s challenges) is feeling empowered; feeling that a person has access to resources that compensate for life’s challenges – whether that’s access to a new medication or getting help for the rent when medical bills pile up. But unfortunately, in my observation, most clients of these agencies move along in a general state of fear of their organizations, thinking that “beggars can’t be choosers”, not quite understanding the complex way non-profit organizations are funded and function, and being too intimidated to ask. While other clients can be inappropriately entitled and demanding, others are too passive and don’t realize that without clients, these organizations wouldn’t exist. Too bad, then, that many clients don’t avail themselves of things like Community Advisory Boards or other “consumer panels”, or those who do, don’t know what questions to ask.

Clients who are poor might not fully understand why an organization needs to pay an administrator what to them is a very high salary, yet sometimes relatively high salaries are necessary to attract and retain high-quality professional administrators when their counterparts in private industry with similar skills and education make much more. But these clients are also entitled to be a part of the organization that serves them. Do they insist that these organizations are at least partially staffed by people living with HIV, or are they run by ivory-tower bureaucrats who only see HIV as a field where they can have power and money by working with a population “no one else wants to work with”? I’ve seen far too many straight, white, HIV-negative women presume to know the plight of urban, poor, HIV-positive black women without ever asking them what life is really like and taking their feedback to heart in planning their organization’s programs. More often, they placate the clients with patronization to shut them up and go on and do everything in the program their own way – that benefits them, not the clients. I’ve seen far too many upper-middle-class gay white men presume to know what life is like for gay street youth without ever really talking to them. I’ve seen people become administrators of HIV programs with no HIV experience because it was a chance to become a program manager because they slept with the right person, when a qualified person was available. I’ve seen sexual harassment go unchecked in programs that are overwhelmed by being understaffed and underfunded – in part because of administrator embezzlement. I’ve seen a community hospital closed by the FBI after its staff engaged in Medicare billing fraud. No organization is perfect, but to see all this in 10 years is too much.

What can clients do to empower themselves, and defend against helplessness, ignorance, and the related depression that can come from feeling disempowered? They can open their mouths. They can ask the tough questions, no matter how much it puts “the powers that be” on the defensive. If the organizations truly have nothing to hide and sincerely want client involvement and feedback, they will cooperate. Only the guilty look sheepish when the cold light of inquisition is shone upon them. Join your agency’s Consumer Advisory Board. If they don’t have one, ask why not. If you serve on one, ask to see the entire agency’s budget – including all executive salaries and bonuses – in non-profit organizations funded by American taxpayers, this should be public information. Insist that an agency have at least some HIV-positive staff on board – and not just in low-level, “token” positions. Ask that the agencies recruit staff that represent the diversity of the spectrum of the HIV-positive population in America – not just all gay men, not just all African-Americans, not just all women. There is strength in diversity, and there are blindspots in homogeneity. Ask the agencies that serve you how they incorporate consumer feedback into their program planning. Ask the staff who serve you if they are being treated fairly, and if not – blow the whistle and demand that these hard-working public servants get the working conditions they deserve. Ask who funds the agency who serves you, and write letters or make phone calls to those funding sources and express your opinions and experiences to them. Call or write your local public officials, state or federal government representatives; if you don’t know how, ask a librarian at your public library to help you find the names and addresses of the officials who oversee the programs.

Accountability in agencies to ensure against wrongdoing doesn’t come automatically. If the highest administrators can’t or won’t engage in above-board practices, it’s up to the consumers they serve to keep them honest. It’s your tax money, and the tax money of your family, friends, neighbors, and community, who fund these agencies. Demand the accountability you deserve.

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