There was a brief moment this past summer when it seemed that everything might be okay after all.
It was pouring rain at the Pride parade stepoff, and everything on the flatbed truck that served as a makeshift stage was falling apart. But standing in front of us were Cleveland’s mayor, the county commissioners, members of the Cleveland City Council, U.S. representatives--a good chunk of the political leadership of the region. They all said, in one way or another, that LGBT individuals deserved full civil rights. They all said, in one way or another, that people with HIV and AIDS deserved dignity and respect and adequate services. They all said, in one way or another, that the table, the table of our civic life together, was big enough for everybody.
We all cheered wildly.
The rain ended and the sun came out during the festival. On the way home, we all drove down Lakeside Avenue to catch sight of the rainbow flag flying over City Hall. There were no protesters there; no one was trying to take the flag down and torch it; it was just there, as if it belonged--at least on that day--over the seat of city government.
And inside, we cheered wildly again.
Those were heady moments, and well-deserved, but in the sober light of the days after, most of us realized that they were merely that: moments.
But we’ve also heard, these past few months, a few voices suggesting that maybe the fight for LGBT civil rights is, really, virtually over. Think about it, they’ve said. Where were we 34 years ago, when the Stonewall riots erupted? Absolutely nowhere, and look how far we’ve come. And AIDS--20 years ago we had nothing, now we have effective treatments and housing programs and gay education and a host of other organized responses. Everyone wears a red ribbon, and rainbow flags are fluttering in every neighborhood. LGBT liberation and AIDS activism are dead because . . . well, we already got most of what we asked for.
The truth is, we’re not much further along than we were a year ago, at the last World AIDS Day.
When partner legislation was introduced in Cleveland Heights, hundreds of residents--the people up the block--poured into Cleveland Heights City Hall, spouting vile, ugly things about LGBT people. Abomination, they said.
The rainbow flag did not restrain their hatred.
Earlier this year, one of the clients at the AIDS Taskforce, sick of over a decade of living with AIDS and struggling with addiction, doused himself with rubbing alcohol and set himself on fire. He survived, but not without burns over 80% of his body.
A red ribbon did not stop the match.
In a non-compromise compromise, the local Boy Scouts chapter got to keep both their United Way allocation and their anti-gay policy.
A rainbow flag did not make them change.
The CDC released a report suggesting that up to 33% of African American gay and bisexual men who were patrons of gay bars and institutions were infected with HIV.
A red ribbon did not stem the tidal wave of infections.
At the state legislature, our elected representatives labored to forever exclude legal unions between LGBT people through the passage of a “Defense of Marriage Act.”
A rainbow flag did not give them pause in their deliberations.
At the World AIDS Conference in Barcelona, experts painted the most pessimistic picture of the epidemic in years, predicting 210 million accumulated cases of HIV by the year 2020.
A red ribbon did not give us a vaccine.
This past summer, the federal government launched an investigation of gay education programs at selected AIDS service organizations, in the belief that they might be “too gay-positive.”
A rainbow flag did not slow down the harassment.
This year, we’re anticipating 35 client deaths at the AIDS Taskforce. At the same time, by the end of the year, we will have conducted six to ten new client intakes for each client who passes away.
And the red ribbon did nothing to stop it.
We’ve earned the right to dance within heady moments. In fact, we need them. A passionate opposition to oppression will not, by itself, sustain us over the long haul. We need visions of how it might be in the end, after our work is done.
But it is still the morning after, and there is hard work ahead, and no amount of flags and ribbons can substitute for the effort. Somewhere inside we hold on to the vision of full civil rights, of a world without AIDS, even as we roll up our sleeves for the next challenge.
Oddly enough, that is where we find community: in the effort, and in the shared memory of a moment. We wake up. We hoist the flag, pin the ribbon onto our shirts. We gather with our allies, take a deep breath, and begin the day’s true work.
Earl Pike and Tracy Jones Pugh are the executive director and assistant executive director of the AIDS Taskforce of Greater Cleveland.
A roundtable discussion on gay and
In 1983 Larry Kramer published an essay, “1,112 and Counting,” that simultaneously infuriated and mobilized thousands of people. These are the opening paragraphs:
“If this article doesn’t scare the shit out of you, we’re in real trouble. If this article doesn’t rouse you to anger, fury, rage, and action, gay men may have no future on this earth. Our continued existence depends on just how angry you can get.
“Before I tell you what we must do, let me tell you what is happening.
“There are now 1,112 cases of serious Acquired Immune Deficiency Syndrome.”
In the wake of recent reports about dramatic increases in HIV infection among gay and bisexual men in the United States, the silence around HIV and AIDS is deafening. Kramer’s wrath was ignited by just over 1,000 cases. We have now exceeded 1.6 million accumulated cases in the U.S., and some 70 million around the world.
On November 1, the Cleveland Lesbian-Gay Center and the AIDS Taskforce of Cleveland co-hosted a meeting of gay and bisexual men to talk about the current crisis of new infections among those groups, and about the long and costly war against AIDS over the last 30 years. Participating were HIV educator Robert Burns, policy advocate John Farina, case manager Shawn Johnson, HIV educator Karl Kimpo-Villaneuva, activist Gil Kudrin, psychologist Bruce Menapace, HIV educator Kevin Moore, Ohio AIDS Coalition director Kevin Sullivan, HIV educator Brian Thornton, AIDS activist Rob Toth, case manager Doug Vest, and case manager Roger White.
Menapace facilitated; a tape recorder was placed in the middle of the room, and after a spoken reading of Kramer’s full essay by Kevin Moore, people started talking. Here is what they had to say.
Rob Toth: Back in February of 2001, I published a letter…calling for an AIDS summit. Gay men were still dying. I didn’t get one response. Not one.
John Farina: It’s amazing--you could just change some of the numbers around, and Kramer’s piece could have been written last week. It’s amazing how much things stay the same.
Gil Kudrin: Larry Kramer, he’s now saying, through his contacts at NIH, that they’re looking at a cure date of 2050, and one billion dead. Larry Kramer has been right since Day One.
But when you go out and you’re being an activist, more often that not you’re doing that alone, and more often than not you become a target. For people who don’t want to worry about their mommies finding out they’re gay, or raising trouble. I now look at the separations in the AIDS world: We have gay men, and bisexual men, and “men who have sex with men.” If you’re a man and my dick’s in your mouth--that’s gay.
Robert Burns: As we have this conversation, and talk about some of the separation and boxes we still have, I think we also have to look at some of the cultural differences around the table. We have separations based on race; there are generational differences. I don’t know many people who walk around saying, “I’m an MSM,” but I do know people who identify as “same-gender loving,” and for many people of color, we don’t identify as “gay.”
I personally don’t identify with the pink triangle, or the rainbow flag--when I see “gay,” I don’t always identify with that term; it’s not me. Being gay to me means not just that I suck cock; it means that I have a whole different perspective on life and how I view relationships and dynamics around politics.
Gil Kudrin: I don’t like it when I see all these different distinctions between people with AIDS. AIDS brings us together, it makes us a force.
Kevin Sullivan: Robert and John both alluded to the article still having relevance today, but I think the big difference--and I can speak to this having been there at the time--is that you could write that article today and it wouldn’t generate a sense of emergency. The gay community, in all its different boxes--no one seems to have that sense of emergency. That’s our challenge.
Brian Thornton: I was at a conference with Eric Rofes last year, and he made some interesting points about how we can’t keep treating AIDS as an emergency. We have to think of a broader movement for LGBTQ health, so that we can think about long-term changes. For a while there--from the mid-1980s to mid-1990s--people changed their behavior enough so that the epidemic slowed down. But then people got tired of it.
Roger White: When that article was written--it was actually that article that prompted me to go volunteer with the Pitt Men’s Study, where they were studying gay men’s sexual behavior. I had to fill out this long questionnaire, and I remember thinking, “Boy, it’s a miracle that I don’t have HIV already.” I stayed in that study for seven years before I became HIV positive myself.
I had tons of education, I went to all their seminars. I’m just one of those guys who had a bad luck of the draw: I was engaging in a risky behavior with someone I loved.
Gil Kudrin: I still carry my anger, and I don’t think it’s unhealthy. Why the world’s not outraged, I don’t understand.
Rob Toth: I think the reason there might be a need for boxes is that in certain communities there is still a high stigma associated with HIV. Cleveland is still very segregated, even without HIV. I personally think that’s why we have a hard time getting people to come together in mixed groups.
I agree with Gil: I embrace my anger; it’s part of what’s kept me going for 15 years. History will look at this and call it genocide.
Bruce Menapace: I’m aware, myself, of a certain amount of sadness about what’s left undone in our work. Two things in particular come to my mind. One is the disconnect between generations. The other kind of sorrow I feel is the regret that our communities aren’t more together in the work we’re doing. We are very separated here in Cleveland, we do have differences, we don’t come together around this issue. The question is, how do we support different people about this issue?
Kevin Sullivan: I think sometimes what we need to do is celebrate what our community has done since 1981. Going back to what Robert said and what Brian alluded to . . . AIDS is going to have to be addressed in our community in the context of larger health issues: substance abuse, sexual addiction. All of these things are going to have to be brought together.
Karl Kimpo-Villneuva: There are paradigm shifts that have occurred. We’ve alluded to the generation of gay men in their 20s, and I’ve read a lot of material that sort of makes light of the fact that they haven’t lost a close circle of friends. That’s true, but at the same time, they’ve never known anything but the existence of HIV.
I also think we also need to take a step back and look at the nature of human sexuality, knowing that the sex drive is the most powerful human urge. How do we create models for behavior change when the “sex drive” is so powerful? I read something recently that suggested that the feeling of lust could be compared, almost, to an altered state of consciousness: when you’re looking to “get it on,” all rational thought goes out the window.
Gil Kudrin: I’ve been with the same man for 12 years. There have been times when in one week, six of our friends would die. There is a lot of sadness behind my anger. I’m sad for younger gay men: You don’t know of a time when you could just meet someone and fall in love and make love and not die for it.
John Farina: Those of you who have been around a little longer--I’ve never lost a close friend to AIDS, and I want to learn about the experience of others. But I also don’t want to be discredited because I haven’t had that experience. I can still be passionate about the movement. I think we need to learn from the people who have been through it, and we also need to learn from younger gay men.
Shawn Johnson: So many of the people I see when they first come in . . . HIV is not even the top priority for them. They’re dealing with all kinds of other issues. I don’t think younger people will ever feel the kind of anger that others feel, because if you don’t go through the experience . . .
Brian Thornton: I’m not HIV positive. But at some point, I expect that I’ll become HIV positive. I can be as safe as possible, I can be in what I think is a monogamous relationship, I can use condoms, I can have discussions--but I think that at some point in the next 50 years, before I die, I’m going to become HIV positive. It’s the luck of the draw.
Roger White: I have two nephews who are gay. They’re educated, they’re intelligent, they’re beautiful, they look like they just stepped out of Queer as Folk. Their big issue is, “Are my clothes right?”
And they have Uncle Roger who has HIV, and he didn’t die yet. And that’s a problem: Maybe if I had died, they would get a different message. I’m 56 and I’ll probably outlive HIV--they still go out and engage in high-risk behavior, and one of them already has hepatitis.
Rob Toth: One of the issues we’re kind of dancing around is AIDS prevention fatigue. If you’ve got a kid who came out at 13, and his whole life has been, “use a condom, use a condom,” how do we change the message to get to people again? Something else: As an out person with HIV, I know that people are still scared, that they don’t want to have sex with someone with HIV.
Karl Kimpo-Villneuva: I don’t think we need to change the message of “use a condom.” Just coming out is a preventative measure. Promoting self-esteem helps prevent HIV. We need to enhance the condom message.
Shawn Johnson: Because I believe in what Karl was talking about, about the power of sex, and because I believe in what Robert was talking about, about self-esteem issues, I don’t place a lot of hope in behavior modification. Not that we don’t talk about condoms, because people need to make knowledgeable decisions. Most of my hope lies with the scientific community.
Robert Burns: If you don’t love yourself, you’re not going to make loving decisions. We have to work that into our messages.
John Farina: We’re talking about individual change, but there’s also a big policy dimension: we need to change the educational system so that we don’t treat sex as something to be afraid of. Countries where they have comprehensive sexuality education--they have lower rates of HIV and STDs.
Doug Vest: Our “family” is dying. I’ve buried a lover--what we’ve seen has to be taught, and I don’t know how. The older people have got to get together again and teach, because we are family, and the kids have to give us that respect.
Kevin Moore: What matters is the small victories. We have to take it on an individual basis. We’ve come a long way in getting the rest of the world to pay attention. We need to make sure we don’t get discouraged: it’s just like civil rights in that we have to be constantly fighting.
Bruce Menapace: Have we made progress since Kramer wrote his article?
Kevin Sullivan: In many ways I think things have changed, and changed for the better. The gay community has responded in an extraordinary way.
Gil Kudrin: I too am proud to be a gay man. We taught the world how to take care of people with AIDS. There is history to be taught, and maybe younger people can take that on.
Rob Toth: What keeps me going is imagining what the day of the cure will look like. How much joy, jubilation there will be in the world! I want to live to see that day.
Bruce Menapace: If there’s something I want folks outside this room to know, it’s that we need to continue to support each other in facing AIDS. Let’s have more conversations across differences--across lines of race and class, across generations.
Perhaps one must be of a certain age—or have lived in the earlier decades of AIDS—to recall the profound impact of first learning that a well-known celebrity has HIV.
In the same way that coming out is so important to the LGBT movement, we have always struggled to have the HIV- infected and affected come forward to help personalize the ever-expanding, mind-numbing AIDS-related statistics.
For some of us, the 1985 news that Hollywood idol Rock Hudson was living with AIDS was shocking and, at the same time, peculiarly helpful. Finally, there was nationally recognizable Face to put with the disease.
It is this same shared need that Greg Louganis’ story helps address.
In 1984, Louganis became the first man in 56 years to win two Olympic gold medals in diving by winning both the platform and springboard events. In 1988, competing against divers half his age, he became the first to win double gold medals for diving in two consecutive Olympics.
But just before the 1988 Olympics, at the height of his competitive career, Louganis learned that he was HIV-positive. He maintained the secrecy about his HIV status by traveling from California to Florida to begin treatment under an assumed name. Rumors notwithstanding, it wasn’t until 1995, in a nationally televised interview with Barbara Walters, that he publicly revealed that he had AIDS.
It’s natural for us to wonder what demons Louganis must have struggled with between his initial diagnosis and the revelation of this information to the rest of the world. During his early October visit to Dayton, he discussed these struggles with me with disarming candor and remarkable self-awareness.
In spite of his extraordinary athletic skills, accomplishments and good looks, he wrestled with low self-esteem, abusive relationships, and anguish over his sexual orientation. These struggles were compounded by learning he had AIDS, and the impact this would likely have on his ability, politically, to continue competition in the hush-hush world of international athletics. He had tangible reason to be concerned. Louganis was close to Ryan White, the Indiana youth who became nationally known for his struggle against the brutal treatment he and his family received because he had AIDS.
“I wanted Ryan and his family to be with me at the 1988 [Seoul, Korea] Olympics, but he wasn’t allowed into the country. I knew I wouldn’t be allowed in, either, if they found out about my HIV status,” Louganis said.
So, he did everything he could to hide his medications and lie to the authorities about his health.
Remaining secretive, he now admits, was fear-based and neither healthy nor a sign of strength.
“Before coming out, I felt alone and isolated,” he remembers. “Not many people were open back then about their HIV status. Although I knew I wasn’t the only one with AIDS, I felt I was living on an island. That’s what secrets do to you. I needed to come out for myself, and possibly to help others, too.”
Speaking to an audience of hundreds at the University of Dayton’s Coming Out Celebration, Louganis says that the most profound accomplishment of his life was coming out about his HIV status—no small statement from someone considered the greatest diver in history.
“Coming out has alleviated a lot of stress for me,” he mentioned. “But being honest has not only helped me; I’ve been shocked to learn how many others it has helped, as well.”
One such person is a young man in the audience, who publicly thanks Louganis. He, too, was diagnosed with HIV in 1988. Believing it was a death sentence, he dropped out of college. Thanks to hope and inspiration he received from Louganis, today he is back in college and will graduate this year.
The young man demonstrates one of Louganis’ modest claims. “Everybody has their own story, and no one story is more or less significant than another. They’re all equally valuable.”
Coming out about one’s sexual orientation or HIV status is a deeply personal, complex and profoundly integrating process. Louganis looks forward to the day when he won’t be referred to a gay athlete or an athlete with AIDS. Until that day, we are grateful for the encouragement he and others with stories no less significant provide for those on similar journeys. |
Bill Hardy, an openly gay clergyman, has been executive director of AIDS Resource Center Ohio (formerly AIDS Foundation Miami Valley) for the past ten years. ARC Ohio was one of the sponsors of the University of Dayton’s first Coming Out Celebration in October.
Young people share thoughts about the
Cleveland—With December 1 approaching, many people in our community will reflect on what HIV and AIDS mean to them. The past 20 years have instilled in us feelings of confusion, fear, hope, anger and activism, and we have forever changed our perspective on our community and the world around us. We are reminded that it is important--now more than ever--to continue working toward a cure, widespread prevention and increased care.
But what do young LGBT people, those born after the AIDS crisis began or those who came out after the inception of quality-of-life drugs, think about HIV and AIDS? Although there is much data on how LGBT youth are affected by the disease--estimates show at least half of all new HIV infections in the United States are among people under 25--the Cleveland Lesbian-Gay Center wanted to find out how the next generation of leaders in our community relates to the crisis.
On November 20, a group of LGBT youth met in the center’s Living Room, the organization’s health and wellness drop-in space. As part of the first in a series of new events for youth called True 2 You, they shared their thoughts, feelings, fears and perceptions around HIV and AIDS:
Dina, 18: The first thing that comes to mind is all the stereotypes people have. I was discussing with my friend once how people are so scared of what they don’t understand. When most people think of AIDS and HIV, they automatically think the person who has it is gay or lesbian and that’s just not true. Straight people have HIV/AIDS, too. I’m sick of people who don’t even want to open their hearts to what is different to them. They are all so stuck in their own precious worlds, that they can’t respect people no matter who they are or what they have.
Owen, 16: My two greatest fears as a gay male are getting bashed and getting AIDS. I think of death and how I am so scared of getting AIDS. I think of all the people that say God created AIDS to kill gay people and it makes me want to cry and hide away from it, like it’s this gigantic monster stalking me. But then I feel safe because I know that there are people out there who feel the same, and we can protect each other. But there’s still that fear. And I pray to nature that one day there will be a cure.
P.M., 16: Watching the movie Philadelphia with Tom Hanks was about the first time I can remember hearing about HIV/AIDS. After seeing it, I remember being afraid because I knew I was gay and so I thought of all other gay people as having the virus.
Steven, 18: This is what I think about when I hear “HIV” or “AIDS”: Death. Decreased immune system. Don’t have sex. Don’t be afraid. Get tested. Know your partner. Practice safe sex. Always use protection. Never stop loving. Don’t be scared to die. Your life is not over because you have HIV/AIDS. Don’t think you’re alone. Never stop living. Never give up on yourself, and don’t begin to cry. Getting sick all the time. Being weak. Not being active. Stay happy. Always smile. The dripping of an I.V. bag. The sounds of the respirator. The sound of silence in an empty room, in an empty hospital wing. The sounds of distant laughter I will never hear. The sound of loneliness taking over the mind and soul.
During the evening, some also shared very personal accounts of being affected by HIV and AIDS, as friends of other young people who were infected with the virus and have since passed.
Brad, 18: The very first time I heard about AIDS was when I met John. I was 13 and just coming to terms with my sexuality, and he was the first gay person I met. I instantly fell in love with him. We had great times. But then I found out he had AIDS.
“What is AIDS?” I asked. His reply was hard to swallow. He told me in one word--the same word that haunts me to this day: “Death.” I will never forget him or all the good times we had, but I never want to see another friend in the hospital because of AIDS. I never want to have another loved one die. The last thing he said to me was, “You were the only thing that kept me from loneliness, and I love you.” I will always remember him. I miss you, John.
Steven, 18: I was ten years old when I met Adam. I didn’t really speak to people, but he refused to accept that. Eventually, he began to befriend me. He was my first male friend. We hung out, did stuff I thought only privileged people got to do. Then I found out why Adam would miss school so much, and why he had to eventually leave and not come back. Adam had full-blown AIDS. He contracted it through a blood transfusion. He proved to be one of my best friends--possibly my only one--and I had to watch him die by the time he was 12. I still can’t let him go, I hear him still and don’t think I can ever stop. I’m not psychotic, just unwilling to accept the fact that he died so young.
“Wrestling with issues like HIV and AIDS is hard for everyone,” said Aaron Patterson, the center’s youth program coordinator. “It can be even more difficult for LGBT youth, who often face a lack of resources and support. That’s why youth are such an important part of the center’s programming around health and wellness. We created the True 2 You program to address the fear and confusion they expressed at the event.”
True 2 You is funded by the city of Cleveland and the support of members of the center. It is a “life skills” peer education program that explores healthy ways for youth to express themselves. Through experiential learning activities, youth examine physical, mental and social health to explore who they are, what they want and where they are going in life.
In order to continue offering these programs and services for LGBT young people, the center needs both the financial and volunteer support of the community. To join, make a donation, get involved, or for more information on the center, call us at 216-6515428 or visit www.lgcsc.org. Your support will help make a positive impact in the lives of many young people. |
This article was written by Cleveland Lesbian-Gay Center youth group members and staff.
In the last 20 years, people working in AIDS service organizations have seen how the HIV epidemic changes by the effect the disease has on the clients they serve. An increase of clients becoming very ill affects the staff that serve them. Death and dying are hard for everyone, including professionals who lose clients. Often, the case managers are given the gift of knowing some of their clients’ wishes and dreams. In the case of Mark, his case manager used that knowledge to make a dream come true.
Mark had admired the singer Joan Baez for many years. He had the opportunity to present her with flowers and meet her backstage at one of her concerts. Mark had cherished a picture taken of him and Joan from that night. In coming to terms with the fact that his battle with HIV, for some 17 or more years, would soon end in death, he assessed and shared some of the high points in his life. During this process, he had copies made of the picture and distributed them to many people, including his case manager.
Mark’s case manager, as well as other staff, tried to make contact with him as often as possible. However, it was a frustrating experience because, with a hospice involved, there was little anyone could do except offer support. After one particularly difficult visit, in one of these moments of frustration and helplessness, his case manager realized that there was something that would make a difference. He would try to reach Joan Baez and ask her to make contact with Mark.
Two weeks after finding contact information, Baez returned a call to Mark’s case manager. At this time, Mark’s condition had worsened. He might no longer be able to speak with her over the phone. Baez, showing a great deal of compassion, indicated that if Mark could not speak, she would sing to him.
Later that day, Baez contacted Mark. She sang to him two songs. One was a favorite, the other a song that had not yet been released. She also spoke with Mark’s mother and partner, offering support. His family expressed their appreciation to Mark’s case manager and Joan Baez. Mark died two days later, having once again been in touch with one of his icons. |
Peggy Anderson is the primary care coordinator and Jim Jarrell is a primary care case manager at the Columbus AIDS Task Force.
The knowledge gained in almost two
Yesterday I had a dream. I dreamed it was 1981. Life was good. I was in a long-term relationship, had a great job making good money, and I lived high up on a hill with a panoramic view of one of the most exciting cities in the world, San Francisco. I was living the Gay American Dream.
Life was good, but suddenly and quietly the dream became a nightmare. I began seeing fliers posted on buildings as I walked down the main drag, Castro Street. Later, news reports popped up everywhere about mysterious and frightening occurrences happening among the gay populations of San Francisco, New York and Los Angeles. Gay men in these cities were dying in large numbers from unexplainable cancers and pneumonias.
Slowly, panic overtook all sense of reality. Young men were dying in large numbers. The age of sexual freedom and innocence had come to an end. Fear, anger and hatred justified longstanding feelings about gay men. Suddenly, there was a belief that God had sent down a plague to wipe out the most undesirables in our society—gay men.
Not knowing where or how, or why this was all happening, all hell broke out. Gay men had become objects of fear and mistrust. We had become the deadly virus itself. Men were thrown out of their jobs, homes, families, even their own relationships simply for being gay and sexual beings.
To say that the level of fear, despair and hopelessness had reached unimaginable measures would have to be the understatement of the century. As the numbers of young men dying mounted, I witnessed incomparable, hysterical panic. I saw friends dying in the most horrible and ugly of ways. Many chose to take their own lives rather than die in such horrible ways.
My own partner, for unknown reasons, chose to go off and die all alone, without me by his side. Many died alone out of being shamed, guilty or abandoned. There are still no words, even today, to describe the sheer terror we all felt.
In November of 1984 I became HIV positive. I contracted pneumocystis pneumonia. I was given the usual three to six months to live and to get my affairs in order; I was preparing for the worst. In my first year of being HIV-positive I got pneumonia two times and was hospitalized several times. I had pneumocystis pneumonia six other times through the years. It’s nothing short of a miracle for me to have survived this long.
In the span of three short years my life was completely altered. Before my diagnosis, I was running a successful business that permitted me a great income. I had traveled all over the country and even internationally. I never had to worry about where my next meal was coming from; I was able to do whatever, buy whatever, and go wherever I wanted with no regard for money.
When I got sick, all of that was taken away, to the point where I would wonder where my next meal was coming from. I went from having everything to having nothing. I lost my job, my home, my partner, and most of my friends. Even having to make the adjustment to be on disability was frightening, because I knew that the meager amount of social security would force me to learn to live in poverty. Would I be able to pay the rent? Feed myself? And before ADAP or Medicaid, there was no chance for me to even pay for the medications I would need to survive. It seemed there wasn’t much reason to live.
Then AZT came out. This was supposed to be the miracle drug. We placed our hopes in AZT, thinking that this would be the cure for AIDS—only to witness people dying from the drug itself. Or living so uncomfortably from the side effects that many times they wished they were dead.
In January 1986, still very sick and wasting away, I decided to move back to Cleveland to be with my family. I could no longer take care of myself and I didn’t want to die alone like so many of my friends. So I came home to die with my family. With the love, support and care of my family, I survived—but life would never be the same. How does someone so young, at the top of his game, go from being a productive and active member of society to being inactive and unable to work and take care of himself?
Life changes and one has to be able to change along with it if one wants to survive.
I wanted to survive. So I went from happy hour cocktails to drug cocktails. Taking twenty or more pills two times a day every day for the rest of my life is truly a test of wills. Pills to prevent future illness, pills to deal with all the side effects from those pills, and more pills to prevent the harms from those pills, like liver damage, kidney damage, diabetes, nerve damage, neuropathy, fatigue, weight loss . . . all along with nausea, diarrhea, weakness and extreme exhaustion on a daily basis.
Nowadays, the whole attitude toward AIDS and medications has changed. Because of the meds, people are now thinking, “Oh well, I’ll just take the meds until they find a cure.” People assume that people with AIDS are not dying anymore because of the medicines. This is not true, and in just the past couple of months I have seen numerous people die of AIDS, five of whom I knew.
Moreover, one big pet peeve I have about meds these days is the advertisements you see by the pharmaceutical companies. People with AIDS are pictured as rock climbers or bicyclists because they take all the meds. This is a disservice to the young community who no longer sees the images of people with AIDS wasting away or dying—reminding them that there is still no cure. And how many of us can climb a mountain anyway?
But having to take meds for rest of my life—imagine what that does to the mental state. It is a challenge, every single day, to sort through bottles of meds and figure out which times of day to take each, with what foods, with what liquids. Sometimes, I struggle with this reality—do I really want to take these pills for the rest of my life? Do I want to deal with these side effects? Do I want to take the risks because these pills are experimental, having lived so long and taken so many regimens and seeing the life span of these meds fail after a two-year period? Do I really want to put myself through this again? When do I say it is enough?
Add to this the feeling that society is not caring, but rather saying, “You deserve this fate.” In fact, AIDS isn’t really all that different than what it was in 1984. The government didn’t care then, and for the most part, they don’t care now.
What makes a survivor? Fortunately, I learned early on that in order to survive, I needed to keep my mind alert and my body active. I needed to feel like I was making a contribution in life—not just waiting to die. The ways that I have found to recreate myself started with support groups, seeing other people like myself, and hearing their stories on the things they did to survive. I then began volunteering, supporting others as well as helping out the agencies that were helping me. Though I can’t say that I’m happy living with AIDS, or that it was the best thing that happened to me, I can say that it was a life-changing experience. Because of AIDS, I have stronger and healthier relationships and appreciation for life.
What helps is having the feeling of being needed—knowing that even living with AIDS, you can still make an impact on life and people can still appreciate you, knowing that you are not just a burden to society, learning about self-empowerment. Knowing that you have a voice that needs to be heard and the brains to figure that your word is worth something. Figuring out that if something doesn’t work for you, you can create change for yourself.
I have learned how to be an advocate—not only for myself, but for others whose voices would not otherwise be heard. |
Dennis Gregory is a Cleveland-area AIDS activist.
For many individuals over the age of 50, there is a deadly misconception that HIV and AIDS only affects the young. Many older Americans feel that if they don’t engage in unprotected sex with persons outside of their age bracket that they will be safe - as if their age alone will protect them. This is not only a dangerous assumption, but a most uneducated one as well.
The reality is that no matter what age you are, if you engage in risk behaviors such as unprotected sexual activities or drug use, then you are vulnerable to HIV infection. The fact is that no one who puts him or herself in contact with a transmittable body fluid (i.e. blood, semen, vaginal fluids, breast milk) without a protective barrier is safe from HIV and AIDS. According to the Centers for Disease Control and Prevention, there have been approximately 800,000 cumulative cases of HIV and AIDS in the United States reported as of June 2001; 14 percent (81,000) of those are in the 50 and older age group.
In fact, the number of individuals 50 years or age and older living with HIV or AIDS has increased 22 percent over the last ten years, a much higher increase than most would suspect.
So what is causing HIV to spread so steadily among the 50+ populations? It is actually a combination of elements.
First of all, the reality is that those 50 and over do remain sexually active, yet are five times more likely not to use a condom or other HIV-blocking barrier when engaging in sexual activities. Those 50 and over are four times more likely not to be tested for HIV despite their lack of protection--allowing for the HIV virus to be transmitted and continue to be passed all the while remaining undetected until serious health problems occur.
Also, since older Americans often encounter other age-related health problems, the actual HIV infection may not only go undiagnosed, but also misdiagnosed.
Often times when dealing with those 50 years of age and older, health providers will mistake AIDS-related illnesses for other age-related issues such as menopause or early Alzheimer’s disease.
In fact, studies indicate that even among health care professionals, when treating those 50 years of age or older, less than 40 percent of primary care physicians assess HIV as a risk.
So what can you do?
It’s simple. Start by getting tested.
Remember, although years may have passed since you have put yourself at risk by drug use, engaging in unprotected sexual encounters, or any other behavior which could transmit HIV, many people do not experience symptoms for up to ten years after infection. And, although those risk behaviors may be in your past, HIV and AIDS unfortunately is not something time will heal. Once positive, always positive, so be sure to get tested every 3 months as long as you’re participating in risk behaviors, and then again every year after discontinuing unsafe practices. There are many free and anonymous testing sites available in Ohio, so to find one you can access, call 800-3322437 (AIDS) voice, or 800-3323889 (TTY).
Also, take time to learn the facts about HIV and how it is transmitted so that you can protect yourself. In the case of HIV and other STDs, what you don’t know can hurt you.
And keep in mind that HIV is not spread by casual contact, so do not be afraid to be close to those whom you may find are HIV positive.
Just remember to always put a barrier between your body and other people’s fluids and keep being tested. Having been negative once does not assure being negative again if you’re continually being unsafe.
For those who have lost friends and loved ones to AIDS, on December 6, ACTNOW (AIDS Coalition of Toledo and Northwest Ohio) will host Toledo’s response to World AIDS Day 2002. At 5:45 pm at the Jefferson Senior Center on 2308 Jefferson Avenue, professionals, activists, and concerned citizens will gather to remember those we have lost to AIDS, and honor those who live with HIV and AIDS today.
The program will include a candlelight vigil, remarks by prominent city officials including Major Jack Ford, speakers, an interactive exercise, and refreshments. The program is designed to help the audience understand the discrimination that HIV positive people often endure, and to empower them to exercise compassion.
Be protected. Be informed. Be well. Play safe. |
Bulanbaji deCella is an AmeriCorps HIV/AIDS educator at David’s House Compassion in Toledo.
Few people can claim that they have been in a room with more than 80 HIV positive people. In fact, most Americans believe that they don’t know one person who is infected with HIV. As a gay man who works as an HIV educator, many of my friends, acquaintances and clients are HIV-positive. But never before have I felt so completely in the minority as when I was one of three HIV-negative people among 86 at an Ohio AIDS Coalition Healing Weekend.
Healing Weekends were created to give HIV-positive people the opportunity to gather in a safe setting, where they don’t need to fear exposure or discrimination. Through workshops and small group discussions, participants explore the issues they face because of their status, and hopefully emerge happier and healthier. Developing a support system, working on mental health issues such as depression and moving toward acceptance of HIV status are characteristic of people who live longer and better lives after infection.
That healing weekends need to exist at all speaks to the enormous stigma people with HIV face on a regular basis. From the beginning of the epidemic, society’s impression of the disease has been that HIV strikes only those on the fringe of society--gay men, injection drug users and racial minorities. People with HIV are fired from their jobs, ostracized by friends and family and/or abandoned by lovers.
Unfortunately, the stigma and shame people infected with HIV often feel is a by-product of our aggressive prevention efforts. We’ve told our community that AIDS kills, that you get HIV from promiscuous or unsafe behavior, that it is an individual’s responsibility to ensure that they don’t become infected. Whether you believe these statements to be true or not, a person who is diagnosed as HIV positive often feels that they are going to get sick and die, that they engaged in stupid behavior, that this disease is all their fault. Many of these people suffered from depression or drug and alcohol abuse before becoming infected, and receiving a diagnosis of HIV only exacerbates their condition.
At the same time, the success of individuals at maintaining their good health for a number of years has impacted prevention workers’ ability to reduce the infection rate. With powerful new medications, holistic approaches, and healthier lifestyles, many people infected with HIV are living more than 15 or 20 years, far longer than at the onset of the epidemic, when people passed away within three years of their diagnosis. We rarely see the wasted victims, covered in lesions, dying horribly painful deaths like we did in the early days of this holocaust. It is easy to see how many people in our community believe that HIV is no longer a problem; that if you become infected, popping a few pills will fix you and your life will not be impacted.
It’s no wonder that more of our friends and family engage in behavior that increases their risk for infection, and that those who are infected have such a difficult time coping with the disease. It also explains why there is such a great divide within our own queer community--negative men to one side of the room, positive men to the other.
So what message should we be spreading to those who are at risk for infection and those who already are infected? Perhaps this: HIV is miserable. If you become HIV positive, there are powerful medications that will extend your life and give you the chance to be healthier. But those pills are poison, and there may be nasty side effects that seem worse than the disease itself. Your life will be much different than if you didn’t have HIV--definitely more complicated, potentially more difficult. With help, you will probably be able to cope with all of the changes--but in the end, it is far easier not to have HIV than to have it. Those words look harsh as I write them, but they also seem real. As a community, it is time we accepted the reality of our situation.
The closing ceremony of each Healing Weekend is a moving event called a healing circle. For most participants, it is an overwhelming culmination of the love, acceptance and simple human touch they have experienced over the weekend. The mixed feelings of joy and sadness resulted in tears and sobbing as people with eyes closed held hands, touched faces and offered hugs.
As I participated in the healing circle, my feelings were, no doubt, far different from everyone else’s. After all, Healing Weekends weren’t created for me, but my experiences were important, too. Certainly, I came away with a more profound understanding of the enormous problems faced by people who are HIV positive. Never again will I be able to downplay the feelings and issues of my friends and clients who are infected or affected. But I will also work harder than ever to keep myself, my friends and my community from becoming infected.
My final thought as I drove away from the weekend was one of gratitude. I was one of a lucky few that gets the chance to have the Healing Weekend experience. With decreasing funds, the OAC may have to cut back, and that means even fewer opportunities for HIV positive people. In my dream world, gay and bisexual men, HIV positive or negative, would be able to experience one of these weekends. Remove AIDS, and we are still a community divided, tormented by stigma, scarred by society and ourselves into making choices that pave the way for further hurt. If we are going begin to live, we must begin to heal. |
Brian Thornton is the community health advocate for the Cleveland Lesbian-Gay Center.
Many people believe that discussing safer sex is embarrassing and time consuming. The other standpoint is that discussing safer sex as often as possible betters one’s chances of not being exposed to or transmitting a STD. Yet few realize that safer sex doesn’t begin with the sexual act itself. Sexual behavior, choice of partners, personal beliefs, religion and environment all influence whether or not someone chooses to participate in safer sex.
Think about it: before engaging in sex, your mind passes through a thought process. There is the decision whether or not to have sex with the individual in question. Therefore, it is safe to assume that sex is heavily influenced by the mind. In some situations, people use sex as a means of escaping from reality. Others see sex as a way to prove their love to a partner. Sometimes sex is used as a form of punishment or a reward. And of course, sex is even used as a way to hide one’s sexual orientation.
Exposure to sexually transmitted diseases is definitely a reason to practice safer sex, but it shouldn’t be the only reason. Protecting and respecting one’s mind, emotions and spirit is just as important. Even people living with HIV and AIDS need to understand that their lives still have meaning and that they are worthy of respect.
Before AIDS, safer sex was never promoted at the level it is today. Today the emphasis is making sex hot and fun—but always safe. What many organizations and instructors fail to realize is that there is a need to help people see if they should change or modify their behavior. Substance abuse, self-esteem issues and peer pressure all have an effect on whether someone decides to use a condom—and those issues need to be addressed just as well.
Many people are not comfortable discussing personal things with a sexual partner, yet physical intimacy is the most personal thing one can do. When the sexual act is long gone, for many the mental and emotional state stirs up ongoing issues. Guilt, fear, remorse, and anger can arise from a sexual act that occurred hours, weeks, or even years ago. If those issues aren’t addressed, the same behavior could occur again and again.
Many people know how to use a condom but are incapable of discussing feelings with their sexual partner. What can result are two people in bed having different opinions on the definitions of love, commitment and casual sex.
For instance, some people believe that if a sexual partner from a one-night stand gives them a phone number then there is a chance for a relationship, whereas to someone else it may simply mean that “the sex was good and let’s do it again” with no strings attached. Some see sex as the only means of socializing with a friend or the only thing they have in common. It is important to understand that sex always encompasses emotions, whether it is anger, joy, revenge, or love. The participants should be able to handle the aftermath.
The term “making love” has always been associated with sex. However, that definition is limiting and unfair. Exchanging feelings can be just as erotic as exchanging fluids. Cooking dinner for a loved one, reading a book and discussing the contents with your partner, walking together in the park, and dedicating a song are ways of having safe sex where no one gets hurt or misinterprets intentions. Want to turn your partner on in a way he or she has never been? Make a special tape of love songs and have them play it when you aren’t around. Creativity shouldn’t be limited to the bedroom; expand your mind as well as your organ.
People living with HIV have the right to make sexual decisions. Whether it means breaking up with a partner or having a new relationship, do it and don’t settle. Far too many people living with AIDS and HIV feel they have limited choices. As a person living with AIDS, I know what it’s like to think your life is over or to believe that no one cares about you.
There is life and sex after an AIDS diagnosis. The need to be touched, kissed, caressed, and sexually fulfilled is just as important to people living with the virus. In certain instances a hug will not only boost morale but also T-cells! Keep in mind that safer sex is a universal issue regardless of ones color, sexual orientation, or HIV status. |
Louis Farmer, MSW, is the coordinator of the Positively Sexual program of the AIDS Taskforce of Greater Cleveland.
This is excerpted from “Sex, Respect, and Being Gay,” an AIDS Volunteers of Cincinnati brochure that appears on their web site, www.avoc.org.
Gay men are still getting infected with HIV. Why?
Because some men still don’t use condoms. Many people feel that with the new drugs there is less chance of becoming infected and if they do become infected, it is only a minor problem. Even if someone is successfully taking anti-viral drugs, they can still transmit the virus. Taking the drugs is not a cure and it’s not a little thing. If you take a chance and get infected, there is still no cure. It will limit your potential and forever alter the quality of your life.
Being gay or bisexual can be very difficult. Many individuals use drugs and alcohol to cope with the stresses of being gay. Alcohol, drugs and depression can lead to unsafe actions and poor decisions. Using alcohol and drugs diminishes the inhibitions and increases the likelihood of making poor choices. They can also damage your immune system and make you more susceptible to infections like HIV. Alcohol and drugs may also make you clumsy and careless in using condoms.
Your best weapon against HIV is your brain. Make the decision to keep yourself and your sexual partners healthy. Safer sex takes some planning, thinking, and negotiating, but with creativity, safer sex can be sexual, sensual, erotic and fun.
What is safe?
Touching, kissing, massaging, and showering together area all erotic ways to discover and please your partner and will not put either of your at risk for HIV. Be creative and use your imagination. Mutual masturbation is another safe and sensual way to avoid HIV. Just make sure that cum and pre-cum does not come in contact with open cuts or sores. Always use latex barriers to prevent sharing these fluids.
What about oral sex?
It is possible to transmit HIV through oral sex. It has been reported that it is possible to transmit HIV through pre-cum, so there is risk even when ejaculation into the mouth does not occur. To prevent HIV infection through oral sex, either avoid putting the head of the penis in your mouth, or use an unlubricated condom.
What about fingering or rimming?
For safer insertion, keep your fingernails trimmed and smooth so they don’t cut your partner. You can use a latex condom, latex glove or finger cot to be totally safe. Rimming (oral-anal contact) is a high risk for hepatitis infection. To be safe, use a latex barrier such as a dental dam or cut an unlubricated condom lengthwise.
If you use sex toys, cover them with a new condom each time that you use them. This protects the toys and makes clean-up much easier. To clean, use soapy water with one part bleach to ten parts water.
What about anal sex?
HIV is most easily transmitted by anal intercourse. This is because there is always some injury to the sensitive skin around and in the anus during sex.
These breaks in the skin can allow blood, semen, and pre-cum to enter your body. While unprotected anal sex is the riskiest activity for HIV transmission, you can significantly reduce your risk by using a latex condom with plenty of water-based lubricant for anal sex.
HIV is easily passed from the “top” to the “bottom,” but it also can be transmitted from the “bottom” to the “top.” Therefore, it is always important that a condom be used during anal sex.
What about condoms?
Always use latex or polyurethane condoms; “natural skin” or “lambskin” condoms will not protect against HIV. Condoms vary in color, size and thickness. Try different kinds until you find one you like. You experiment with other things, experiment with condoms!
When you take the time to find the right condom, take the time to use the right lube. You must use a water-based lubricant with a latex condom, since oil-based lubricants will dissolve latex. There are many good water based lubes on the market today; Wet, Foreplay, Aqualube, and ID, to name a few. Do not use oil-based lubes, creams or any oil-based product such as Vaseline, baby oil, Crisco, or lotion. Oil melts latex! Keep your lube handy wherever you have sex.
Visiting the cruise areas and having unprotected sex with multiple partners is very risky. Don’t let anyone fool you that this one time won’t hurt.
Having unsafe sex any time, anywhere is dangerous. Protect yourself and help others protect themselves!
You are worth protecting. You are in control of your own sexuality. The choice to have sex or not to have sex is ultimately yours. It’s up to you to protect yourself even if he won’t. Don’t let anyone sweet talk you into unsafe sex. Remember--low risk doesn’t mean no risk. |
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