Saturday, January 04, 2014
Some Thoughts (After about 20 Years) on AIDS
I’m a sucker for a story about AIDS. I had to stay in my seat at Rent in NYC until most of the crowd had left the building because my companion was convinced my tear-stained, swollen face might cause concern for those who saw me. So I knew what would probably happen when I went to see the Dallas Buyers Club movie. But Rent was years ago and I’ve grown, right? Ha. (sniffle, sniffle) Ten years after Rock Hudson brought AIDS from the health section to the front page and headlines, the faith-based group with whom I worked created a resource for churches to minister to persons living with AIDS. Some may say that was a bit late. In fact, we were the frontrunners … as the organization had always been. A women-led group of over a million members with a century long history of pushing the boundaries of race relations, addressing poverty, and giving women a voice, Woman’s Missionary Union was used to dealing with the naysayers. We’d been there. We’d done that. At the time, the phrase that I held onto came from an AIDS advocate who had successfully launched a ministry in his own church. “I usually tell people that we welcome people with AIDS at our church but we have a special section for them,” he reported and noted that the responses ranged from shock to somewhat admiration that they had found a way to put these people “in their place.” “Yes,” he continued. “We ask them to sit next to the adulterers, drunkards, and gluttons.” Back then, I thought the statement was brave. And, it was … then. But it was also an indicator that AIDS was considered a sin, that, somehow, the person with AIDS had brought this upon him or herself. And, as God as my witness, my thinking has changed. Now, after spending the last 20 years volunteering at an AIDS hospice and seeing a variety of individuals from a variety of walks of life leave this world as the result of a disease that was introduced into their systems from a variety of reasons, I put no trust in those who want to tell me why anyone dies. Anyone with enough confidence to explain good and evil to me, to separate the world into categories, to dictate complete strangers to eternal consequences … yeah, I have no need for further conversation with them. Simply put … shit happens. And … as a volunteer at a place where people spend their final days with their bodies breaking down to nothingness, I mean that … literally. What I do ponder is the one thing I can rail against and maybe … someday … see changed (cause, let’s face it, I’m not pulling a Lazarus on anyone anytime soon) is the injustice of the disease. Once I went to see a small anniversary production of the play The Normal Heart by activist Larry Kramer which revealed some of the stupidity that existed in earliest days of dealing with AIDS. The audience was only about 50 people. The very well-acted performances were done in an art gallery and in the round with actors only about three feet from the first of only four or five rows. I’d been working at the hospice for a few years at this point and had read And The Band Played On (the chronicle of the ever-changing-name and progress of the disease), seen all the AIDS-movies-of-the-weeks that were cropping up and pretty much knew what I was in for. Still in the middle of the first act, I began to tear up. By intermission, I was crying and dabbing my eyes. When the second act started, my friend had given me his drink napkin and people were passing me theirs from the back row. By the time the bows were taken, I was doubled over and sobbing. One of the performers left the stage with the others, raced backed to their dressing rooms and then back to my friend. “May I hug her?” he asked my best friend who was also gay and glad that the cute actor had even spoken to him. He nodded with envy that indeed a hug was acceptable. The actor grabbed me and held me tight and whispered in my ear, “It’s so sad. Thank you for caring.” I couldn’t speak so I just nodded. What he didn’t know was that while I wished I was crying for the loss, for the many faces I had seen depart us too soon, what really had me close to convulsions was the complete and total stupidity of it all. The play and much of what I knew about AIDS comes down to -- humans are idiots. AIDS might not be closer to a cure but certainly would have lost less souls if individuals, governments, pharmaceutical companies and societal groups had chosen to do the right thing. Instead everyone chose to fight for their right to … WHATEVER. And that sense of “justice” led to the injustice which continues to bring tears to my eyes. Some people wonder how I got involved with AIDS. They think I must have lost a close friend or family member. Nope. I simply wanted to do something in my community and when I asked the group I had enlisted who had the same sense of needing to make a difference what they wanted to do, the two people who showed up on the night of the decision happened to be gay and happened to suggest AIDS. So I began to research what the fourth largest city in the nation had by way of AIDS ministry opportunities, and I found an AIDS hospice. Since they had SUCH a tremendous track record of dealing with churches (and at the time I was with a church and this was a church group and please read the previous statement with tongue planted in cheek), I had to do some convincing that we weren’t going to shame the residents of the hospice, that we had no intention of doing anything more than being the arms, legs and feet of those who were quickly losing their control of those needed appendages. Eventually, the hospice gave in and let us do more than wash the windows and wax the furniture and now, as I mentioned, we’ve been at it for close to 20 years. I thought of all of this today as I watched the Dallas Buyers Club. I will leave it to the critics to judge the cinematic value of the film. For me, what it did once again was remind me of the injustice of it all. As I so often do when it comes down to pure emotion, let me revert back to my Southern heritage, “This just ain’t right!” When we become a society that fears inequity less than law suits, that questions authority when the authorities are clearly not putting our best interests in the forefront, and that cannot be bought by big business when the fate … actually the life … of our neighbor is threatened, then I will stop crying.
Posted by KC at 6:25 PM