Being Alive Newsletter; Being Alive/Los Angeles - September 93
Sean Kinney-Drake

Today, six years into HIV, the process seems to be going in reverse. I struggle to hang on to the little precious things I have left. The apartment is filled with the personal items precious and special to me. They are simple yet tasteful; they are the estate. Others that surround me, such as my close friends, are moving up, gathering more (cars, condos) and planning for their future. Their progression through life is as it should be, while my course has taken a dramatic turn. So I will just say it, I am losing my class. While you may hear economic class, I speak here of social class as well. These values dictate my expectations, desires, and priorities all emanating from the middle class, suburban social structure in which I was raised.

Those of us with AIDS are dependent upon social service agencies and of course the government. In 1993 we are living much longer than our predecessors of just five years ago. With this comes increased need for and dependence on services. For example, six years ago, services delivered for six months to a client were executed more on an emergency basis...reactionary. Now that services are delivered for five or more years, we must take a look at what that means to the client receiving the services. People delivering the services must continually evaluate their focus and their style of delivery, this is a relationship that could go on for years. While we have little opportunity to change the government, we do have an opportunity to impact the AIDS Service Organizations (ASOs) that are providing our services.

We started AIDS agencies to provide dignified services where none were available. Our constant challenge was to maintain dignity for our friends. Perhaps it took a little more effort but we knew the benefits far out weighed any "cost". I sense a different motivation growing today; let's do it another way, it will be easier...easy is out! I have witnessed the focus shift. People with AIDS are subject to ever changing procedures often motivated by the gathering of statistics and the acquisition of funds. Has this taken us off the natural course of creativity? Grants and donations are important but let's not forget that we, the clients, come first. We are the folks that make up those ridiculous statistics. We are not the burden of the agency, but the ones for whom all the grants are received.

There is certainly no denying that ASOs have become businesses, many successful. Being in business traditionally requires a given decision making process. Suffice it to say that we started out by manipulating the old networks and practices, our goal should continue our efforts of change...remembering those people with HIV. People with AIDS are not customers. We are clients. We are real people with real needs and deserve the same dignity offered to all. We are susceptible to decisions made by Boards of Directors and staff that did not include our input. Agencies haven't realized that the greatest service in the world delivered incorrectly or inappropriately has no benefit. We all must strive to match service delivery with client's values.

Frustration hit a new level during my intake process at an ASO. I was amazed following a one hour intake process when I was notified that all the information I gave to a perfect stranger would be recorded on my file in a computer. Mind you I could not see the screen and thus had no idea of how the information was being interpreted. I was, to say the least, stunned when after the intake I was informed that I would have no further contact with this person to whom I just poured out my life's story. Here I was feeling as though I was developing a relationship with someone who would later be of great service to me. The experience got worse when I was informed that the case management system was so impacted that unless I "really needed" one I would not be assigned a case manager.

I still haven't figured out why all the personal information was needed since I would not be case managed. To say to me that "unless you really need a case manager, none will be assigned" left me wondering if I would be depriving someone else of the service who might need it more than I. This is not my decision to make...but that is exactly what I thought. I elected not to receive the particular service I had gone to apply for.

Now they promote self-case management. Do you realize for PWAs treated publicly, we must continually self-case manage our healthcare, and now our social services...something went wrong here! I walked into the agency feeling satisfied that I had finally accepted the need for a case manager and walked out angry and wondering what the hell our trusted agencies have developed. This is not entirely of their making but, my friends, we must start some serious communications between all of us, the agencies and the clients.

Losing "abilities" challenges my ability to function in this world and thus my dignity. This disease has taken away my driving capability, reduced my ability to work and severely limited my ability to participate in the policy making process affecting my life. Add to this the task of self managing health care in the county system, where excuses replace results, and I am left degraded.

I ask the question: could those AIDS bureaucrats who probe the private lives of persons with AIDS and reduce their personal circumstances to fields in a computer, feel a sense of pride if the roles were reversed? So many of the people with AIDS who spoke publicly about our lives and loss of dignity, loss of self-worth and loss of privacy are dead. They have not been replaced en masse. Rather we have people who fight amongst themselves for more money to create more programs in the name of AIDS care. I can only assume the system has lost the most significant element we had in the beginning: input from people with AIDS!

Occasionally I attend a support group, where for two hours we share our successes, our struggles and, of course, treatments. Lately I have become overwhelmingly aware of the care that is not available to me. They talk about this test, that treatment and their constant appointments with private doctors. Participants make recommendations to me as though I have the same options they do. More than ever I am saddened by the inequities of AIDS care. Larry Day (a committed AIDS activist) died months before he needed to because of county policy; my life is in their hands. Oh God, I pray for change. Everyday I hope my opportunistic infections and other health circumstances will not exceed the county's ability for treatment. I wish to take nothing away from those who have their private health care in place. Five years ago I was your equal; today I look through a glass wall with tear filled eyes.

Opportunity is a distant past, today I simply manage what little there is left. There will be no more. Frustration...we use to strive to maintain some semblance of concern for the dignity of those who experience this disease on a personal basis. Now we evaluate their qualifications...you have too much...you don't have enough...you don't qualify. We are still the gay community taking care of our own, and others, let not our history in AIDS care be compromised by those who provide the money. Fight for what you know is right. Listen to the voices of the people with AIDS and people with HIV. We were not given a choice in having this struggle but we have choices when it comes to our support and service. We want our services to become better, more compassionate, and delivered in such a way that our dignity is protected.
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