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This has been a shameful year of AIDS discrimination Cleveland--�Live and Let Live� is the theme of this year�s World AIDS Day. It is actually an extension of last year�s theme, �Stigma and Discrimination.� By all accounts, AIDS discrimination has never disappeared; if anything, it�s made a shameful comeback in Northeast Ohio. Consider: � An HIV positive man in Akron who coaches football for young people is fired after league officials find out his serostatus. Only after community outcry is he reinstated. By then, his and his family�s identities have been revealed in media across Ohio and the region. � An HIV positive man in Cleveland is reportedly called an �AIDS-infected faggot� and beaten by Cleveland police during a suspected DUI stop. The man was a passenger in the car, but was accused of �resisting arrest� and jailed. � A Clevelander with AIDS begins a new position with a company that provides home-delivered medical supplies to ill people. After his three-month probation period is over, he is offered full-time, regular employment. He signs up for insurance coverage, and in the process discloses his HIV status. He is sent home until company officials �decide what to do.� A week later he meets with a human resources officer, who offers him a generous severance package if he leaves the company immediately. � An Akron man who won a five million dollar judgment against the McDonald�s corporation for AIDS discrimination subsequently loses an appeal made by McDonald�s. The appellate judges order a new trial, which could take years. � An HIV-positive woman in Cleveland is arrested under the state�s HIV felonious assault law and placed in jail under $200,000 bond. The charges were brought by a boyfriend who had beaten her up and trashed her apartment. The woman�s photo is taken from mug shots and regularly shown on local television media. Upon her release from jail, her neighbors and prospective landlords make life--and getting an apartment--difficult for her and her young child. � A woman with front-desk responsibilities serving the public discloses to her employer that she is HIV-positive. She is immediately reassigned to warehouse duties to avoid contact with the general public. This is but a partial listing of events that took place in 2003, in our community. AIDS discrimination is illegal, but all too frequent. In recent months, it actually seems to be increasing. Russell Rich knows the reality of AIDS discrimination all too well. He began his fight with McDonald�s--his long-term employer--years ago, but still hasn�t seen justice. A model employee, Russell�s troubles with the fast food chain began soon after he disclosed to supervisors that he was HIV-positive. Things went downhill from there, and before long, Rich was out of a job. A jury awarded him a substantial judgment, but McDonald�s appealed, and judges ordered a new trial. When you�re sick, a new trial can take a lifetime. �Since all this began, I�ve had a number of life-threatening illnesses, and have been unable to pay for either my insurance or my medication. I think McDonalds� goal is to wear me down, outlast me,� he says with frustration. �When you step forward, when you decide to say something is wrong, there�s a cost,� he adds. �You�re out there as a person with AIDS, and everyone knows it. I lost friends, I lost my privacy. I�m still waiting for justice.� �But what I won is my dignity. I know that I�m right, that what they did was wrong. I can�t tell you how many people have come up to me, and told me similar stories of AIDS discrimination, and have encouraged me to keep fighting. I have my self-respect.� Rich now regularly gives presentations and grants press interviews, hoping to explain the facts of his case and to highlight the ongoing reality of AIDS discrimination. �I understand why people don�t come forward when they�ve been mistreated. It can be frightening. But at the same time I want to encourage people to stand up for their rights. It�s the law: it�s illegal to discriminate against people with AIDS.� Two years ago Rich received a Voices Against the Silence award from the AIDS Taskforce of Greater Cleveland, honoring those individuals and institutions that have helped �break the silence� of AIDS in northeast Ohio. It�s a well-deserved recognition, but it�s not enough. Even the phrase, �live and let live�--that�s not enough. In the end, it�s about justice, fairness. And if we accept that as the only reasonable goal--well, there�s a long road ahead, and work to do. Earl Pike is the executive director of the AIDS Taskforce of Greater Cleveland.
Generation Gay-C turns middle age Generation �Gay-C� turns middle age When a strange new illness began killing gay men in 1981, I was 17 and preparing to graduate high school. If you have done the math you know that I just turned 40, something risky for a single gay man to admit. More importantly, though, it means I am part of the group of gay men who first heard safe-sex messages and whose lives were shaped by AIDS. We were the first to hear that we needed to use condoms to protect ourselves from death while our heterosexual contemporaries merely worried about unwanted pregnancies, though in the early days, no one really understood why. Call us �Generation Gay-C,� the C being for condoms, for our ignorance of what sex and the �gay life� was like before safer sex and the big scare changed everything. I consider myself lucky. Born gay and Jewish of eastern European heritage, I escaped the Nazi death camps by a little more than two decades, though some in my family did not. I remember the war against Anita Bryant in 1977 and the assassination of Harvey Milk on November 27, 1978, but I was too young to fully understand what was happening. When the drag queens drew their line in the sand and rioted in protest of police misbehavior at the Stonewall, I was just finishing first grade. I don�t know how my life would be different if it weren�t for AIDS, originally called Gay Related Immunity Disorder or GRID, but I know it would be. Generation Gay-C didn�t invent the safe-sex messages. The messages were invented for us. The fact that I am alive today to talk about it is a tribute to those brave gay men who, in the face of Ronald Reagan, violence, bigotry, conspiracy theories and religious zealots, drew their line in the sand to make sure I got the message and have been spared the painful, premature death sentence. It wasn�t easy for them, especially those in small towns. Often, it meant coming out of the closet, either about being gay or being infected. In those days, the �gay plague� made television news every day, spawning hatred and fear. Even people who now know they were misguided at the time, held gay men responsible. Doctors refused to treat the mysterious disease. Undertakers refused to bury those with the disease. There was talk of quarantine. They held us in high contempt. The anxiety over actor Rock Hudson�s death from AIDS was that he had shortly before kissed actress Linda Evans on the set of Dynasty. The genuine concern of the day was that �beautiful innocent Linda Evans� was going to become infected and die. (The queers, after all, deserved it.) There was violence. Gay men lost their homes, their jobs, their families, and in some cases, even their dignity. In my hometown of Canton, detestation of gay men and those infected with AIDS ran so deep that a house being renovated to be a comfortable living space for men with AIDS was torched when neighbors learned what it was. I will never forget the city council meeting shortly afterward when an elderly man rose to tell council members, most of whom had been either silent or expressed indignation that the house may have violated zoning ordinances, that had he known what the house was for, he would have carried the gasoline himself. Half the audience cheered him. But something else was happening, too. As gay men, and by that time, women began coming out of the closets to fight the disease and care for one another, people learned that gays and lesbians were capable of love. It has taken 15 years to realize how profound that perception change was. That we are now discussing the possibility of same-sex marriages is owed to the brave men and women who dared express love and compassion in the middle of the AIDS madness. The next step was to reach out to us in Generation Gay-C to tell us that our lives are worth saving and that, despite the horrors of the time, we matter and our lives are worth living. Our queer predecessors and allies are heroes who are often overlooked. Generation Gay-C owes them everything. Unfortunately, Generation Gay-C has not been so generous to those who came after us. We mourned senseless deaths. I remember a two-month period in 1995-96 when there was an AIDS death and funeral every week. Luckily, gays graduating high school this year will probably not experience that. The gains, however, are due to medical miracles, not due to us caring for the youth the way we were cared for. Generation Gay-C has gotten complacent. As we have reached middle age, we have forgotten why we are still here, and about the struggle those older than us went through to get us here. We grew up and, in some ways, failed our duty. It is our fault that new HIV infections are up among college-age gay men who, because they haven�t been told their history, think bareback sex is chic. AIDS prevention is still considered dirty business, and we have not been willing enough to soil our hands. Sure, we open our wallets to those who care for those already infected, but there is little zeal for talking about sex and reduction of risky behavior by comparison. Generation Gay-C got comfortable with the federal commitment to prevention and AIDS education during the Clinton years, though it was not enough either. Now, this current administration is attacking domestic AIDS prevention efforts, turning the clock back to 1981 with politicized science and destructive �abstinence only� requirements. The final blow will occur when the �faith based initiative� directs the bulk of already reduced federal funds to churches not interested in the health and welfare of gay men. Where�s the mass outrage among Generation Gay-C? Has Generation Gay-C been so seduced by the marketing companies wanting our wallets, erroneously telling us how affluent we are, that we have lost the fighting spirit of those who saved us? Has Generation Gay-C been so placated with 11 hours of weekly television with gay themes and gay characters that the basics don�t matter? A glance at attendance at recent GLBT events suggests that the very sense of community that reinforces value and worth in the lives of adolescents and youth is waning. Sure, there are more out high school and college kids than ever before, and the ones we see seem to be doing just fine. Generation Gay-C, however, is not doing well with those who are struggling - those we know are there, but don�t see. They need us as much as we needed those who stepped forward for us. Their risk factors are the same as ours were two decades ago. We�re the adults now, and looking good in spite of four decades of life. Still, the struggle is not over, and Generation Gay-C needs to live up its end of the bargain given us. Lives depend on it, as ours did.
Life on the down-low can be as safe as living openly There has been a lot discussion about the �new� phenomenon of men on the DL, or down low. Tempers flare when discussing whether or not men on the DL are spreading the AIDS virus in the African American community. For some reason the idea that a man who has sex with other men in secret seems more emotionally charged when the men in question are African American. The New York Times and other reputable magazines have discussed same-sex behavior among men in the African American community, and although the articles have had both positive and negative responses, they have tended to pigeonhole the DL phenomenon to one race. Because of this, a number of African American men and women have profited on black women�s fears by charging outrageous fees to attend seminars about men on the down low. The bulk of these presentations attack and blame DL men as opposed to offering reasons why these brothers do what they do.� There are different types of �men on the DL.� There are men who are married or actively dating women while having sex with men--many of whom know they prefer being with a man, but due to cultural and religious expectations will live a public heterosexual lifestyle. Many men in this situation feel they cannot embarrass their family and community, and as a result, may never tell their wife or girlfriend. Some men on the DL will have a girlfriend but never pursue an intimate relationship. These men accept the fact that they are not attracted to women but need one as a cover to throw off suspicion. There are also men on the DL who do not date or have sex with women, but choose not to publicly admit to dating or sleeping with men. As stated above, cultural, religious and family expectations make it difficult to admit their sexual orientation. There are men on the DL who marry in order to �cure� themselves of their attraction to men. These men sincerely want to change and realize they cannot--but by then they are stuck in a marriage. The reality is �the DL issue� has existed since men have had sex with men. This is not new or foreign. It is dangerous and misleading to blame a particular group for spreading AIDS. When HIV was first discovered it was seen as a white gay man�s disease, and various communities, therefore, felt it wasn�t their problem. Until homophobia ends, many people will be reluctant to publicly disclose their sexual orientation. Economics and personal safety outweighs waving a gay pride flag. Too often heterosexuals want DL men to be honest and open. Why should a man who has sex with men admit to it when as soon as he does he risks ostracism from the church, his peers and family? Sexuality cannot always be categorized as gay, bisexual, or straight. It is easier to categorize sexual behavior than to explore the endless possibilities of sexual variables.� AIDS is the only disease that has forced people from all walks of life to come together. Regardless of one�s background, sexual orientation, gender or religion we are infected or affected. Yet we as a society continue to attack individuals that do not fit into our categories. The heterosexual and gay communities have to accept the fact that some men who have sex with men will not identify as gay or bisexual. What is considered gay in one community isn�t the same in another. There are men on the DL who practice safer sex more than gay or straight-identified men. Until we as a society stop playing the �blame� game, begin to challenge homophobic leaders and expand sex education beyond straight and gay, issues like the DL phenomena will continue to exist. Louis Farmer is the coordinator of the Positively Sexual Program of the AIDS Taskforce of Greater Cleveland.
Although infection is steady, CATFs cases grow The Columbus AIDS Task Force is an organization in transition. On July 24, they moved into their new home at 1751 East Long Street, and early this year executive director Sue Crumpton left. Since then, Aaron M. Riley has been the acting director. A search for the new director should be completed by spring. The move to the new space, according to Riley, was brought about by needs of accessibility and cost savings. The new space is sandwiched between two main arteries running east from downtown, Broad and Long Streets. �Long Street has two regular bus lines and Broad has nine lines, and this means that many, many more people have easier access to us and our services,� he said. CATF currently has a staff of 46 full-time workers and has an annual operating budget of $3.5 million. Riley said that the current mission of the CATF is to �deliver comprehensive case management, to provide support vis-�-vis medical, mental health and housing services, as well as being a group that provides advocacy for those living with HIV and AIDS.� Riley also said that one of CATF�s main missions is to �provide prevention education.� The organization currently serves approximately 12,000 clients a year. While most of the funding is specifically for Columbus and Franklin County, there is some money to cover the six counties adjacent to Franklin as well. CATF has seen infection rates in keeping with the national statistics of roughly 40,000 new infections each year throughout the U.S. �I don�t believe that the rates in Columbus are necessarily increasing, but they are steady and that means that they are not declining,� Riley said. However, even though rates are not rising, �the number of people that CATF is serving is increasing, mainly because in addition to the new cases we are also treating the cases that are benefiting from the advances in treatment and medication.� Riley attributes the current apathy surrounding the epidemic to the advancements in medication. �The urgency to educate, to change behaviors, doesn�t seem to be there,� he said, �because people are seeing the disease as chronically manageable.� �But that�s just not true,� Riley emphasized, �Because if you were to ask anyone who is dealing with being positive or having AIDS, then you know that the intricacies of the medication regimens and the side effects are awful.� Riley also said that, in these more conservative times, �Prevention education has become much harder with abstinence being the mainstay of their platform.� The fact that the Bush administration�s health agenda has also called into question the effectiveness of condoms �doesn�t help the situation at all.� Riley believes that the government has had a credibility problem with HIV and AIDS from the start when �Reagan didn�t even want to say the word AIDS� for so long. �There is a general feeling that the government response to AIDS has always been slow, a sort of too little, too late,� he said. �We made some slow improvements during the Clinton years, but we have now lost ground again and that is sad.� Riley�s advice to the nine Democrats vying for the presidency is that they should �promise to set aside partisan politics when it comes to the disease, because there are people still getting infected, people still dying.� Riley refers to the leadership of certain countries �where they have been able to reduce the infection rates by half and even two-thirds.� Riley also said that he will support that Democrat who �will make monies available for the epidemic without partisan strings being attached.� Riley highly praises the �very caring� Columbus community. �Compared to other cities, we have been a leader,� Riley said, �because we were funding case management and prevention with the help of the Ohio Department of Health long before it was politically correct to do so.� Riley believes that the Ohio health department, the Columbus City Council and other community funders have been very good towards the fight against AIDS. He is aware, however, that in economic downturns that the CATF has had to work with these groups and agencies to find ways of making fewer resources go the same distance as before or even further than ever. �I hope that in an economic turnaround that these groups remember the cuts and sacrifices we are taking now so that they can help us expand later.� He is also very concerned about the racial dimension to the epidemic. There is growing scrutiny within minority communities, particularly among African-Americans, on the disproportional rates of infection. �As a community, us African-Americans have to start talking openly and love each other unconditionally,� he said. He believes that the pervasiveness of the �down low� phenomenon, men who have sex with men but do not regard themselves as gay, exists in part due to the systemic racism faced by African-Americans and other minorities in society at large. Riley feels that these men of color who already may feel that �so many things around them are out of control don�t want to address the issue of their homosexuality that makes things seem further out of control.� �They are thinking that the world doesn�t even accept me as a black man, how will it possible accept me as a gay black man?� Riley also posits the idea that down-low cases are further compounded by the intolerance exhibited by churches and their leaders towards homosexuality. �Many people of color go to church to fit in and belong and when they find that the church is closed-minded about gayness then these men feel like they don�t want to feel ostracized in this place that they come to seek some level of comfort.� Increasing rates of infection coupled with the increased longevity of those currently infected means that more funds and resources are going to be needed in the near future. �Non-profit organizations always feel the results of an economic upswing a year or two after that bounce in the economy occurs,� he said. �Moreover, because so many non-profits have been doing the work of AIDS crisis management, because largely the government had failed to do its job, then it becomes even more difficult to hold the government�s feet to the fire because they think that groups like ours are there to take care of things.� Riley�s message on World AIDS Day is that �HIV is a totally preventable thing, so if you are a sexually active adult please keep getting tested and always know your status. Because if you are negative then you can do all you can to stay that way and if you are positive and need assistance then you can reach out for the help that is available. You don�t have to be alone.� For information and other resources, contact CATF at 614-2992437 or visit www.catf.net.
In the end, its all about individual life stories This is what it all comes down to: the stories. This last spring the AIDS Taskforce worked with the Cleveland Public Library and Playhouse Square to develop and present a script about the lives of people living with AIDS in Cleveland. The performance was coupled with a presentation by Tony Kushner, the well-known playwright who penned Angels in America. For weeks before the event, a group of Taskforce clients living with HIV met, talked, rehearsed and told each other about their lives. Following are some excerpts from the final reading. Each year for World AIDS Day we add up the numbers again: locally, nationally, globally. But in the end it�s about the stories. Each year for World AIDS Day we review progress in treating HIV infection: new therapies, different combinations, promising medications. But in the end it�s always about the stories. Each year for World AIDS Day we measure the growing impact: on lives, communities, whole nations. But in the end, the epidemic is about the stories. They speak for themselves: -------------- I grew up in a small town in Ohio, on a farm, actually. It wasn�t exactly the best place in the world to be a gay kid, but I survived. When I was 20 years old I started working at an AIDS organization here in town, and two weeks later, I got tested. The test came back positive. I thought to myself, how can this be? I�ve only been with four people, and I was careful. I used condoms because that�s what everyone said: use condoms. I missed the part about using a water-based lubricant, so one time the condom broke. But I was so careful. After I tested positive everything began to spin out of control. I couldn�t get any work done, I couldn�t handle being with friends because we�d talk about this and that and it didn�t mean anything, I just couldn�t function for a while. I thought to myself, how can this be? I thought to myself, I�m too young. My parents know I�m gay, but they don�t know yet that I�m positive. I thought to myself, how can I tell them this? I�ll be 21 in May. -------------- After ten years of living with AIDS something happened and I began to get sick. More like just sick and tired of it all, of living with it, waiting, being alone. I sank into a deep deep depression and started using crack again after being years in recovery. Which of course only made it worse. One day I just couldn�t take it any more. I�d been falling and falling and it just didn�t seem to matter either way, so I poured rubbing alcohol all over my body and set myself on fire. I lived. Burns over 80% of my body, but I lived. It didn�t burn out the virus, though. I still have AIDS. -------------- Seven years ago--it might be eight by now--I was living on the streets. That�s not really the beginning; it�s more like a middle. Before that I had pretty much lost my family--let�s just say it�s a little hard to be black and gay in Cleveland--and I after I found out I had AIDS, I lost my job due to AIDS discrimination. Then, of course, I lost my house, and then, of course, I lost everything else because that�s how that story goes. Happens all the time. So seven years ago, or maybe eight, I was living on the streets, getting high and drinking a bottle of vodka every day, with AIDS. Oh, yeah: I also had hepatitis B, and hepatitis C. That saying, �you�re dying of AIDS,� didn�t really fit, because I was dead already. I was a ghost. I was the smoke that drifts up from the heating grates on a winter night, something you see but don�t really see, a cloud you walk through. -------------- I was one of those just-in-time people for the combination therapy when it became available in the mid-nineties. I was down to ninety pounds, wasted away. I had already said my goodbyes to a lot of people and remember just laying on my mother�s couch, too weak to get up, waiting. And then the new medications came, and it really was a miracle. I was better in months, almost back to my old self. Incredible. Last year, though, all the meds started wearing down. I developed resistance. We�d try something new, and I�d develop resistance to that. Salvage therapy: I hate that term--it sounds like the muck they dredge up from a pond, the gore they scoop up after an accident. And I just couldn�t get better. I had some weird opportunistic infection that was making me weaker and weaker and thinner and thinner, and they tried every test they could think of, and they could never quite figure it out. I was on the couch again, just like before. Not leaving my apartment, sleeping all the time, no energy, and besides that, not wanting to go out because I look terrible and I know it and when I�m in public I see me with everyone else�s eyes. �It�s been a year of that now, the tests. They keep saying, �We don�t know why you�re getting sicker and sicker.� And I keep thinking, �I�m dying and no one knows why any more.� -------------- I told my mother and my sisters, and for almost a year, they didn�t want to have anything to do with me. Finally they warmed up a little, and it was okay for me to visit my mama�s house. She bought some separate dishes for me, that weren�t kept with the other dishes, and I wasn�t allowed to use the bathroom while I was there. And I had to leave my baby at home with someone else--the littlest one, the one with HIV, her granddaughter. -------------- I�d worked at the same place for eight years. In all that time the only people who knew my status were members of my support group, my doctor, my case manager. At work I have a best friend. We�ve talked about everything over the years--about our families, our loves, our hopes, our dreams. Except that one thing that I couldn�t tell her, couldn�t get out, couldn�t even whisper. One day in our support group we talked about disclosure. And I talked about my friend, that I hadn�t told her, that it was like this glass wall between us. So in group that day, I decided I would tell her, the next chance I got. The other group members helped me prepare for rejection; we role-played the bad things that could happen after I told my friend, and how I would take care of myself. A week later I was at work, talking to my friend in the hallway. There was no one else around. For some reason--maybe it was something in the paper that day--the subject of AIDS came up. And I decided to do it, right then and there. I said, I have to tell you something. I have HIV. I have the virus. She pulled me into an empty office, shut the door behind me, sat me down, and sat down across from me. She took my hand. �I do, too,� she said. -------------- The last year of Eric�s life was awful. He was sick and hardly ever got out of bed, he was half crazy, and he could never seem to get enough morphine to manage the pain, or the addiction, or the dying. People drifted away from him one by one because it was so hard to take. I was still stopping by after work every day, or most every day, and we would have these insane conversations that didn�t quite make sense. He was chain-smoking in bed, and he kept falling asleep with a lit cigarette in his hands, so his sheets and blankets were full of tiny holes. Toward the end he would call me in the middle of the night, screaming and swearing, demanding that I get him a gun--just get me a fucking gun--so he could blow his brains out neat and swift. His parents were great. His dad was a pediatrician, and his mom was a therapist. They tried so hard. After Eric died we had a memorial service, and then just a few of us gathered to spread his ashes. We met at the sculpture garden, next to a giant abstract sculpture Eric loved. Eric�s dad took the box of ashes and began slowly walking around the sculpture, scooping up handsful of bones and ash, and spreading it on the ground, into the wind. Eric�s dad was about 5 feet tall and looked ancient, shuffling. And he starting sobbing, this great, imploding, heaving as he walked. This sweet old man, barely able to put one foot in front of the other. -------------- When I told my younger daughter that I had AIDS--hell, she just ran around and told everybody. But my fifteen-year-old--she�s different. She doesn�t talk to any of her friends about it, nobody in the family. She doesn�t say anything. �I know she cries when she thinks about it, and I can imagine being her, lying on the bed, and guess what she�s thinking. It�s pretty simple: Mom, don�t die. She�s already learned to eat her grief, her loss, like a kind of food. That phrase activists use--you know, silence = death? Well, it�s not really true, because I think part of my daughter�s silence has to do with holding on to my life; that if she doesn�t say it aloud, it won�t happen--like when little kids stand perfectly still, thinking no one can see them. Mom, don�t die; swallow; crawl under the covers; wait. -------------- The way we add up the numbers . . . it�s not accurate. Call the CDC and you�ll get some numbers--a million, two million. Call the World Health Organization and you�ll get--I don�t even know what it is now--75 million? But that leaves out too many. All the people walking around mute, hollowed out, maimed. From 1985 to 1990, my friend Tom was the person who told all the positives at the anonymous county testing site. Whenever a Western blot showed HIV, the person met with Tom, and Tom told them. They always wanted to know how long they had left to live. Tom probably told 500 people--sat on the other side of a desk as somebody walked in, so anxious they were ready to jump out of their skins, and sat down, and sank, folded inward, as Tom uttered the words again, again. Positive. Positive. Positive. One day Tom walked to the middle of the bridge over the river, climbed over the rail, and dove into the water. They didn�t find his body for a couple of days. He was gay at a time when everybody assumed gay equaled AIDS, but he didn�t have HIV. Another casualty of the plague, but not listed in the CDC�s numbers. -------------- This past year I�ve been haunted by a passage from the Roman poet Seneca, written almost 2,000 years ago. It�s from his version of the play, The Trojan Women. The lines come at the end of the play, after Troy has been vanquished, the city in ruins, the dead lying everywhere. The chorus speaks for the whole city, the survivors: �Whatever the whims of fortune dictate, we have to hold on to something solid surely not wealth or power and not the ones we loved, whom death can take, but the bedrock truth of what we have seen and heard and felt--the truth of our grief.� What we have seen, heard, felt; what we know: we, now, surviving these past two decades of an unimaginably horrific plague, are full of that truth, and lives to be remembered, and stories yet to be told. Earl Pike is the executive director of the AIDS Taskforce of Greater Cleveland.
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