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Top Stories This Week in the Chronicle.
November 30, 2001

 

Rally, vigil, youth events to
mark World AIDS Day

by Sue Crumpton
and John Farina

Columbus--More than 22 million people have died of AIDS since the beginning of the epidemic, and on December 1, World AIDS Day, groups across Ohio will hold events to commemorate those lives lost and to raise awareness about the ongoing global pandemic.

This yearís theme for World AIDS Day is "I Care . . . Do You? Youth and AIDS in the 21st Century." The theme encourages all young people to become more aware of the risks of HIV and AIDS for themselves, their partners and their children.

Half of all new HIV infections occur in young people under the age of 25. Empowering young people to use their influence on their families, friends and communities creates a powerful force to help stem the tide of the AIDS pandemic.

In both Columbus and Cleveland, events will be held to increase education about AIDS among young people and the general population.

The United by Our Light Candlelight Vigil and names reading will begin at 6 pm at the gazebo in Goodale Park. It is being sponsored by the Short North Business Association, AIDS Walk Central Ohio, Stonewall Columbus, the Ohio AIDS Coalition, and a host of other community organizations.

The Columbus AIDS Task Force is also coordinating two youth outreach campaigns for World AIDS Day. CATF student interns Celia Tamez and Heather Griffiths of the Graham School are working with area high schools to increase student involvement in the candlelight vigil while youth HIV prevention specialist Tyler Benack is collaborating with OSU student groups to coordinate a red ribbon awareness project. This campaign is designed to raise awareness about HIV/AIDS young people under the age of 25. The trees on the Oval of Ohio State Universityís main campus will be wrapped in red ribbon and ribbons and HIV information will be distributed on campus.

CATF will also distribute "safer sex kits" to establishments serving primarily the gay and African American communities. CATFís Men who Have Sex with Men (MSM) program will distribute safer sex kits on Friday, November 30. The Tobias Project, an HIV education program serving men of color, will distribute kits on Saturday, December 1.

In Cleveland, people with AIDS, activists, medical providers, and others affected by HIV will gather at the southwest corner of Public Square from 4:45 to 5:45 PM to rally for increased funding, education, and prevention efforts to fight the spread of HIV.

The featured speaker will be Louis Farmer, noted activist and case manager at the AIDS Taskforce of Cleveland. Throughout the day, community members will be on hand to distribute information cards so individuals may become involved by contacting their government representatives and educating others about HIV.

For additional information about HIV and World AIDS Day events throughout the state of Ohio, call the Ohio AIDS-HIV-STD Hotline at 800-332-2437. The hotline operates seven days a week. For more information on northeast Ohio events, contact John Farina at 216-621-0766 or see the North Coast HIV/AIDS Coalition web site at http://www.nchac.com.

Sue Crumpton is the executive director of the Columbus AIDS Task Force. John Farina is public policy manager of the AIDS Taskforce of Cleveland.


 

New treatments donít
mean itís over

by Debra E. Parmer

Itís easy to forget history. Up until 1987--a period in which many thousands died--there were no anti-HIV drugs on the market. "Treatment," as such, consisted of trying to manage often-advanced opportunistic infections, and trying to "make the patient comfortable." The desperate desire for something--anything that could slow down HIV progression in the body--was almost palpable.

In 1987 the Food and Drug Administration approved AZT as the first antiretroviral. The problem with AZT was soon evident: it didnít work for very long, and it made a lot of people sick. It took some years, and a better understanding of how HIV really works, before truly effective medications came on the market.

The answer turned out to be simple in theory, if complicated in practice: HIV mutates, so the best way to lower HIV levels is to attack the virus on several fronts simultaneously. Combination therapy--also known as "cocktails" and highly active anti-retroviral therapy--was born, and death rates, for the first time since the beginning of the epidemic, began dropping.

Diagnosis today is radically different than it was 15 years ago. We have weapons to fight HIV. The weapons themselves are a whole new alphabet soup of medications, and there are, admittedly, problems. Side effects, cost, and viral mutation still frustrate efforts to truly manage HIV, but the bottom line is clear: People with HIV are living much longer, and in many cases much better, than they did before.

HIV medications are extending the lives of people who choose to begin the antiretroviral therapy, and it is likely that, over time, new medications--such as the nucleotide analog Viread, approved in October by the FDA--will appear on an episodic basis. The news, in historical context, is good. But the belief that "things are much better" has also led to other, unintended problems.

Unfortunately, some HIV-negative people have begun to assume itís okay to practice unprotected sex, believing that if infection occurs the current drugs will "take care of things," or that a cure is imminent.

People with HIV know better: Even with the medications, HIV disease can be devastating, both physically and emotionally. While some things have changed, this much hasnít: Everyone, regardless of their HIV status, needs to keep practicing safer sex and safer injection drug use.

And if youíre HIV positive, and havenít seen an HIV physician, make the appointment. Thereís a lot that can be done to make people healthier, and there are programs in place to pay for most or all of the treatment recommended. Donít wait to get sick: take charge of your life, and your health.

Debra Parmer is executive director of the Northeast Ohio African American Health Network in Akron, and is coordinating the AIDS Taskforce of Clevelandís HIV Treatment Advocate program.


A new wave of infection is
just around the corner

by Earl Pike

I am reluctant to put some of these thoughts to paper, for good and varying reasons. After all, the GLBT community has been pounded by viral warnings for nearly 18 years now, and we are all weary of admonitions.

Those of us who work in AIDS are partly to blame. In the 1980s, there was an catastrophic ring to many of our public announcements. We said that before long, even the uninfected would be impacted. Some of us were profoundly, unalterably, cruelly affected. It wrenched our souls. But for most Americans, AIDS remained a tragedy once or twice removed.

Then things got better; we moved on. The drugs helped. So did the silent recognition that we had been falling into what seemed like a bottomless sorrow--and the subsequent flight away from the epicenter, toward other things, toward the banality of daily existence. You can only take so much; you take a cruise, dig a garden, refinish the basement.

So I am reluctant to say anything because weíve been here before: warnings, action, reaction. This time, I hope weíre wrong.

I fear that we are on the initial crest of another large wave of infection among gay and bisexual men. The numbers support it--there are widespread reports of increases among men who have sex with men. After a period of relative stabilization, the collective effort to preserve the safety of the GLBT community may be unraveling.

That, by itself, would be something terrifying, because despite what anyone says about advances in treatment, the reality is that living with HIV is still, often as not, horrific, and most people still die years before theyíre supposed to.

But thereís more. I fear that if there is a dramatic increase in infection among gay and bisexual men, the American public wonít be as accommodating as they once were. In the first decade of the epidemic, and into the 1990s, we all argued that no one should be mistreated--because, after all, who knew? Now, American opinion can and sometimes does say that everyone should know better. Current infections, the argument, goes, are self-incriminating.

The truth is multi-layered, of course. Human sexual and drug-taking behavior is infinitely complex, and besides, itís utterly absurd to contend that anyone, given even a modest amount of hope and self-esteem, truly wants to get infected. But it takes volumes of psychosexual, cultural, historical, physiological, and other data to help people understand the complexity. Why are infections rising among gay men? "Irresponsibility" is the answer most likely to get 15 seconds of air time, not, as we would prefer, a summary of the myriad realities that comprise post-millennial, post-HIV GLBT identity and community.

If all of this is even partially true, then we are in deep trouble. On one hand the GLBT community is weary of death and admonitions. On the other hand a growing number of Americans are weary of the whole damn epidemic, and their capacity for compassion is, from their perspective, increasingly strained.

And gay men in their late teens and early twenties are showing up at the doors of the AIDS Taskforce of Cleveland, or CATF, or AVOC, with slips of paper in their hands that say, Western Blot: Positive.

This is my second hesitation: there really is a part of me that wants to scream, to resurrect old Larry Kramer speeches and plaster them on the sides of buildings. No one wants to hear agency directors like me jump up and down and yell. Itís old, and pretty ineffective. Never mind, I want to scream. This:

There may very well be a new pack of wolves at the door.

This is not going to go away for a long time.

There is nothing satisfying or erotic about condoms, but itís the best thing we have.

AIDS is a horrible disease, even with drugs.

Only the GLBT community can save the GLBT community.

In all likelihood, no one in any real position of power will ever come along and say, "Thank you, and Iím sorry that you, as a community, had to endure so much."

And weíre not even close to a cure.

All thatís pretty true. We have to go on, through each wave and setback and each success.

How we do that is, in part, easy. Use the damn latex. Deal with whatever you need to deal with thatís preventing you from doing it; get some help if you need it; but use the damn latex.

Itís also much deeper. We need to continue nurturing communities that support life, that sustain hope, that nourish GLBT youth, that seek the counsel of GLBT elders, that continually reach out to build new alliances, that hold out a promise that says that surviving to a ripe old age is a good thing. An incredible thought: live long and well.

It will take that much, for that long, and at that price. The preservation of a culture doesnít come cheap.

I hope Iím wrong. I hope the epidemic, as a force in human history, and as an enduring presence in the GLBT communities, is beginning to wither, shrink, fade. But if itís true that a new wave of infection is just around the corner for the GLBT community--well, if itís true, remember history, take a deep breath, and face the oncoming storms. Remember the old rule of first aid, the one they taught at the beginning of the curriculum: save your own life first, and then look around you to see who else needs help.

Earl Pike is the executive director of the AIDS Taskforce of Greater Cleveland.


AIDS advocacy in Ohio:
The missing link

by John Farina, Steve Townley,
and Kevin Sullivan

Support for HIV and AIDS programs in Ohio is under attack. It is rarely is debated on the floor of the Ohio House of Representatives or the Ohio Senate. You donít hear about AIDS from the governor. But AIDS is on the minds of Ohioís elected officials.

Much of the discussion about HIV and AIDS is carried out quietly. Behind the scenes in legislatorsí offices, with department officials and among the budget crunchers, the disease is often part of the discussion.

Sometimes the conversation is good. The Ohio Department of Health has been working to protect the limited dollars available for HIV prevention, AIDS case management and ADAP, the Ohio AIDS Drug Assistance Program.

Sometimes the conversation turns bad. In 1999, for example, House Bill 100 was passed at a lightning pace--a new law that makes non-disclosure of HIV-positive status to a sexual partner a felony.

Our elected officials need to be educated. Term limits discourage legislators from knowing much about more than one or two issues; they simply donít have time to become "experts" on all the issues and concerns crossing their desks. As a result, legislators rely heavily on advocates and lobbyists for their information--including their information about HIV.

There are professional AIDS advocates, such as AIDS service organization and drug company representatives. There are "lobby days" in which consumers meet their legislators and tell their stories.

The missing component, however--one used very effectively by those who work against us--is public participation. The more effective any group is at mobilizing public participation to communicate needs, the more likely they will be successful at moving their agenda forward.

You can play a key role in the education of elected officials by writing, calling, faxing and e-mailing your representative on HIV and AIDS issues. Meeting with them in the district is the most effective way to get messages across. The budget--that process by which legislators decide which dollars go where--is a key arena for advocacy.

Recently the Ohio Senate Finance Committee approved a budget-balancing package that cuts the heart out of health and human service spending. Nearly every single health and human service program in Ohio is facing deep cuts.

Funding reductions will impact people living with HIV catastrophically. The Ohio Department of Health has worked to maintain AIDS funding levels approved in the budget earlier this year. Even after the governor and the House-recommended a 6% cut in state agency budgets, and on top of other cuts earlier this year, AIDS prevention and treatment funding levels have--so far, anyway--remained stable.

But that could change. If the proposed cuts from the Senate are not worked out between the House and the governor, an additional 2% would come out of the Health Department budget. This would mean over $8 million in cuts at the Ohio Department of Health, which could seriously impact AIDS funding. At stake are funds for HIV prevention, cuts in case management, and additional limits on the AIDS drug program.

What can be done? Call, write, fax, e-mail. Since the beginning of the epidemic, voter advocacy has resulted in much of what we have today, and voter advocacy is what will protect programs and services for the future.

Act. Contact Senate President Richard Finan at 614-466-9737 or by e-mail at SD07@mailr.sen.state.oh.us, and House Speaker Larry Householder, 614-466-2500, REP78@ohr.state.oh.us, and tell them not to cut Health and Human Services and AIDS funding:

More HIV issues loom on next yearís policy horizon: safer sex education, other funding issues, amendment of the HIV criminalization law, minority health initiatives, housing support, and Medicare changes will all be debated in the halls and offices of state and federal policy-makers. Your help is needed to ensure that the interests of those impacted by HIV and AIDS are considered.

For additional information on how you can be involved, contact the advocates in your area. Call John Farina in Cleveland at 216-621-0766; Kevin Sullivan in Columbus at 614-444-1683 or Steve Townley in Cincinnati at 513-483-5757.

John Farina is the director of public policy at the AIDS Taskforce of Cleveland. Steve Townley is the policy coordinator of AIDS Volunteers of Cincinnati. Kevin Sullivan is the executive director of the Ohio AIDS Coalition.


 

What men are telling each other about sex and HIV

 

by Bill Tiedemann

Cleveland--Recent reports are disturbing. A 2001 CDC study indicated that HIV rates, especially among young men who have sex with men between the ages of 15-22--and especially among African Americans and Latinos--are skyrocketing. "HIV fatigue" seems to have set in, and unsafe sex is on the rise. Young gay men are getting sick again.

The CDC estimates approximately 40,000 new HIV transmissions per year. In 1999 alone, 15,464--or over half--of new HIV infections were among men who have sex with men.

Through December 31, 1999, over 2,500 people were known to be living with HIV or AIDS in Cuyahoga County, accounting for 26% of all of Ohioís cases. It is estimated that 4,500 people are currently living with HIV in our community, and that 70% of those 4,500 are men who were infected as a result of unprotected sex with another man.

So how are we doing on safer sex in the local LGBT community? Itís common knowledge: people are using condoms, but inconsistently.

Recently the AIDS Taskforce of Cleveland conducted informal interviews and focus groups with men age 30-50, some HIV negative and some positive, including whites, Latinos and African Americans, to find out what people were thinking and doing. Here is what the community is saying.

When youíre having anonymous sex (not with a boyfriend, lover or date) do you discuss HIV?

"Thatís passé--the drugs will take care of it. Besides, Iíve been wrapped up in condoms for too long."

"We do, but we discuss it along the way--through body language."

"Safe sex? Oral never; anal, usually. But itís rarely discussed."

"I think we know we should, but . . . we donít use condoms all the time."

"We know what to do, but we donít always do it."

"Its just laziness, I guess. Sometimes I donít give a shit."

"It looks like a manageable disease, so why discuss it?"

"If the condoms are around, sure."

"Drugs and alcohol have played a significant role in my decisions about condoms. When I moved into active sobriety, I began to give a shit. I had a clearer head."

"I tell them right off the bat [that Iím positive]. If itís just anonymous I donít tell them, but I always play safe--though the other guy rarely asks, and rarely wants to use a condom."

"Iím not hearing a lot of safer sex talk since the cocktail [antiretroviral combination therapy] was introduced."

"The declining death rates and increased awareness of the medications has decreased safe sex discussion and actions."

Why do you think unsafe sex is still happening?

Perceived low risk of infection is a significant factor for younger men, but loneliness, depression, lack of education, religious struggles and internalized homophobia--believing, on some level, that being gay or bisexual is wrong--all emerged as factors. Condom fatigue--"Iím just tired of having to use them"--was mentioned among all age groups, as was the assumption that a cure or vaccine is right around the corner.

Other responses to this question were a bit more revealing:

"Sometimes I havenít had it in so long that I donít want to screw it up by asking the HIV question or using a condom."

"Despite all the information weíre bombarded with, weíre human, weíre sexual beings, and donít always think everything through. Who does?"

"I canít help but resent that the burden of safer sex seems to be on gay men, while the rest of America does whatever it wants."

What would tell other gay, bisexual, and transgender men in Cleveland about safer sex?

"The first thing is to decrease drug and alcohol use, so you begin to take care of yourself. Alcohol and drugs have been my excuse to do anything I want and not be responsible."

"Guys who are negative must ask the question."

"Prevention messages should be consistent and sustained especially for the younger guys. They didnít see friends dying of the disease, catheters, wheelchairs and hospice care. Itís only a matter of time before they will. They think theyíre invincible, like I did, and I have been positive for ten years."

"Love yourself. No one will take care of you except you."

We all know the guidelines--or think we do--but it never hurts to have them repeated.

If youíre having anal sex, always use a latex condom with a water-based lubricant. If youíre allergic to latex, you can use polyurethane condoms. The statistics are clear: if you use condoms for anal sex you will decrease your risk of HIV infection or re-infection substantially.

Avoid swallowing your sex partnerís semen or cum when giving head. Remember, there is a possibility of HIV infection through oral sex: according to one study, oral sex with an HIV+ partner leads to transmission in about one out of 2,500 cases, whether or not thereís ejaculation.

During our interviews, only one person reported using condoms for oral sex, and the truth is that unprotected anal sex is much riskier than unprotected oral sex. But the truth is also that people are more likely to use a condom for oral sex when they know their partner is positive than when theyíre unsure of their partnerís HIV status. Go figure.

The guidelines still maintain when both partners are HIV positive because you can get "reinfected" with HIV--introduce different strains of HIV into your body--and that can make the virus stronger. You can also get other stuff you might not already have--additional sexually transmitted diseases, which will weaken your immune system just when you want to keep it strong.

Finally, itís important to recognize that the risk of exposure to HIV is directly related not only to perceived risk of infection, but self-worth and a multitude of other psychosocial issues: homophobia (external and internal), child abuse, drug and alcohol addictions, poor emotional regulation skills . . . and guys just being human.

Therefore, if "stuff" is getting in the way of being safe, seek assistance at the AIDS Taskforce of Cleveland, the Columbus AIDS Task Force, or any AIDS service organization or gay and lesbian community center. If they cannot assist you, they can make a referral to a mental health professional in your area.

Enjoy yourself. Express yourself. And protect yourself.

Bill Tiedemann is the capacity-building manager of the AIDS Taskforce of Greater Cleveland.


 

The HIV discrimination
of 20 years ago is still there

by Sue Crumpton

I lost my son, Nicholas Mark Crumpton, to the AIDS epidemic on July 19, 1995. Nick was only 26 years old when he died. He spent the last three years of his life living with me in West Hollywood while I worked with Los Angeles Shanti.

The city of West Hollywood adjourned their council meeting in memory of my son on July 24, 1995. The level of support services provided to my son during the last years of his life were incredible--but they were only available due to the advocacy of groups like ACT UP. The services were demanded, not given.

As World AIDS Day 2001 approaches, it reminds me of the pain my son suffered not only due to his illness, but also due to the discrimination that continues to be associated with HIV and AIDS. Just weeks before Nickís death, we made a visit to see my daughter and mother. I will never forget his struggle with that decision, and the anxiety he expressed about the pain he would feel if they, or any of our friends, rejected him. While we participate in World AIDS Day we must remember: If our society and government had not been prejudiced and sexually inhibited, my son and many others might not be dead.

Earlier this year I was forced to confront the reality that the AIDS epidemic in the United States is 20 years old. Mixed in with my grief there is anger that comes from knowing that when the AIDS epidemic in the United States was first identified, nothing was done. How many people would be alive today if this epidemic had been handled differently?

I feel I must guard against becoming a fanatic about the disease as I hold on to my passion for making a difference. I just feel so determined that the needs of people living with HIV and AIDS must be met. Losing my son was the hardest experience of my life, and witnessing the way people have treated and continue to treat those living with HIV makes it take on even a greater horror.

For me, this means we all must continue to work even harder to eliminate the biases in our culture that made it possible for so many people to be allowed to die. We must keep those who have died in our hearts, and continue to be there when someone reaches out for support.

Now, more than ever we must seek ways to stop those at risk for HIV infection from becoming infected. Let us vow to have reduced or eliminated HIV when the 40th anniversary arrives.

Sue Crumpton is the executive director of the Columbus AIDS Task Force.

 


My first Healing Weekend didnít
end with Sunday night

by Shawn Cumberledge

On October 19, I awoke with a nervous feeling in the pit of my stomach: I was going to my first Ohio AIDS Coalition Healing Weekend.

OAC has been hosting the healing weekends for over ten years, providing the opportunity for people living with HIV and AIDS to share support, ideas, and expectations for the future. Participants have learned about alternative therapies and medical aspects of HIV, and gained the tools necessary to live a life of hope, healing and empowerment.

As I gathered my bags and prepared to leave, I couldnít help but feel frightened and hesitant about attending. Would I feel comfortable? How would I feel sharing my life and experiences with such a large group of people--all strangers? Would I be surrounded by people who were sick and dying--and would it only increase my depression about my illness?

My biggest concern, however, was about age differences: I tested positive for HIV on my 21st birthday; Iím now 22. Although itís has only been over a year, I have yet to find a friend my age who can share my experience about being HIV positive. Since testing positive, I thought I would be "the only one" like me, alone.

Little did I know that the feeling of loneliness would soon evaporate. After arriving, I soon realized my preconceptions had been wrong. There was not one moment during the stay that I was not comforted, educated or inspired. My life was changed, not only by the amazing workshops, but by the many courageous people around me as well. Then I knew there was no longer anything to be afraid of. Attending the OAC weekend made me realize that I do not have to fight the battle myself; there are others fighting the same battle.

If this had been all that I got from the healing weekend, it would have been more than enough. On the way home Sunday evening, I spent the drive recapping my experiences. Though I felt sad to be going home, I also felt safe and secure. For the first time in a long time, I felt like myself.

I assumed I would get home and another week would begin. I was wrong. The healing didnít stop, it continues to this day. The supportive network of people I met did not vanish; they continue to keep in touch. Since then, Iíve shared my healing weekend experience with friends and family, and encouraged other HIV positive people to attend. We all need healing, and we all deserve to live with a sense of hope about our lives, and our futures.

Shawn Cumberledge is a freelance writer living in Akron.


 

AIDS activism may have changed,
but it is not dead

by Stephen Potchatek

It was a brisk, overcast morning in Cleveland. The Thanksgiving holiday was just behind us, and I was looking forward to my 25th Christmas. It was December 2, 1992, and I was preparing to head to the clinic, as I had done so many times before, to get my test results back.

This time was unlike the other times I had gone for my results. My brother, then just 30, was lying in a rented hospital bed, deathly ill from AIDS, in his tiny Columbus apartment.

I remember walking into the clinic and through that single brown door, ringing the bell, and waiting patiently. Finally, the moment had arrived. The counselor opened my file, looked at it, and set it aside. "Well your test came back reactive. That means youíre positive for HIV infection."

That was how it all began for me. I remember that day like some strange clear haze. It was a moment unlike any other in my life. It was also the beginning of many other moments that would be equally indescribable, but never quite as defining.

AIDS was first reported to the public in the summer of 1981, eleven and a half years earlier. Over those first ten years members of ACT UP, the AIDS Coalition to Unleash Power, had chained themselves to bridges, staged die-ins in major cities across the country, and shut down the New York Stock Exchange.

This was the activism in the early days of the epidemic. But in the second decade, such tactics became increasingly "radical" for some, and misunderstood by the rest. Looking back, I can see small traces of apathy setting in even back then, as hundreds and thousands of young gay Americans were dying.

The threads of activism were soon replaced by the thoughts and emotions threaded into the cloth we referred to as "the Quilt," to be displayed on the Mall in Washington. Activism was replaced by the flickering lights of candlelight ceremonies on World AIDS Day, or the many AIDS Walks mounted across the country.

There is no doubt that activism has changed--but itís not dead. I remember the first die-in I attended in Cleveland (actually, I didnít really attend at all, I stood on the opposite side of the street wanting to participate, but too afraid to take a step). It was classic ACT UP street theater: the dark hooded robes of the Grim Reaper, prowling the steps of City Hall around the chalk outlines of bodies.

I remember the anger. Cleveland, it seemed, had yet to spend any money on HIV, while it was spending hundreds of thousands of dollars to save a football team. The battles were everywhere: people were losing their jobs and homes, we were fighting for treatments and housing, for safer sex campaigns. The list was endless.

Itís still endless. In some ways weíve come far, weíve developed new tactics, weíve achieved a great deal. In some ways, itís the same struggle. AIDS service organizations labor to keep their doors open to meet the needs of the "new wave" of clients, many of whom are different from those in the early years.

Today we are living longer, costing more, crossing gender, racial and sexual orientation boundaries. Today weíre separated by social, economic and educational classes. Today the solidarity of AIDS as a "movement" is perilously fragile, and we wonder where the leaders of the past have gone, who has replaced them, who will fight disclosure laws, who will protect medication funding, healing weekends, programs, essential services.

AIDS isnít over; neither is the need for activism. People are still hurting, and isolated, losing their jobs, and going hungry. Some of us are homeless; some of us are fighting drug addiction. People with AIDS are still blamed, cursed in the name of GGGod. Itís not over.

So letís get busy--whatever form the next wave of activism takes, letís get busy. After all, weíre still fighting for our lives, and thereís nothing more precious.

Stephen Potchatek is board president of the Ohio AIDS Coalition. He has recently written Seasons of Hope . . . Spring, a collection of 51 stories and poems by those infected with and affected by HIV and AIDS. For more information, visit www.SeasonsofHope.com.

 


HIV and me: A boyís own story

by Matt Schmid

"It wonít happen to me."

"Iím too young to be infected by HIV."

"I am too old to be infected by HIV."

Too straight, too gay, too cute, too ugly--I hear them all. To be honest, I used to believe some of them. None of them are true.

I am a 23-year old gay white male, the ManHealth coordinator for the AIDS Taskforce of Greater Cleveland. I grew up in Wayne County, a predominantly rural area about an hour south of Cleveland. I was a farm boy and my community was simple, if not a bit ignorant.

Growing up in a school where the word gay was equivalent to pervert or freak obviously didnít help nurture my sexuality, so I stayed in the closet, pretending as best I could.

Wayne County is hardly on the cutting edge of sexuality education and prevention. Iím sure people assumed that by telling teens to abstain from sex until marriage, teens would--of course--listen. They did the best they could. We were completely informed regarding male and female "parts" and how babies are conceived. Not surprisingly, however, we carefully avoided topics such as safe sex, human sexuality, STDs and condom use, the occasional dry and science-based pamphlet not withstanding.

In all fairness to my hometown, I do remember talking about HIV on two separate occasions: once in biology, when we discussed the biochemistry of the disease, and once in government, when the subject somehow steered towards Magic Johnson. Despite these two groundbreaking moments in Wayne County education, no one ever indicated that we were at risk of contracting HIV--or any other STD, for that matter.

This was only five years ago. Clearly, comprehensive HIV education is lacking in many schools, especially in the smaller, less-privileged communities.

When I first came out at 20, I didnít know anyone who was HIV-positive, at least not within the scope of my own social boundaries. This inability to empathize with those with the disease helped to solidify my own skewed sense of security. I was 20, damn near invincible, for all I cared. At times, I chose not to use a condom. I was not at risk. I was sure of it.

Just before my 22nd birthday, I was introduced to a man who was HIV-positive. After some trepidation on my part, our association grew and we became "bar friends." I was determined to keep the relationship at this level. I was scared of contracting the disease. My lack of education led me to believe I could get HIV from kissing, embracing, or other casual touching. As time went on, he became aware of my ignorance, and was kind enough to educate me, slowly and gently.

My first major HIV epiphany occurred when an ex-boyfriend of mine started dating an HIV-positive person. I couldnít understand it; it seemed certain suicide. I wasnít aware at the time that protected sex, when done right, is very safe. I was sure my ex was going to die of AIDS.

I needed answers. Motivated by both desperation and curiosity, I sought out counseling and finally began to get most of my HIV education. Eventually, the stigma I associated with those living with the disease began to dissipate. Actually, as any healthy gay drama should unfold, I started dating the same HIV-positive person who had previously been with my ex.

It was then that I decided to educate others about HIV and AIDS. I knew a lot of my friends had not been using condoms; their reasons were the same arrogant, nonsensical boasts that I had once declared. Even my older friends had become careless, suffering what is known as "condom fatigue," which is nothing more than knowing the game and being bored with the rules.

The HIV-positive person and I had our differences, and eventually we split up. Around that same time I began my current position as an educator at the AIDS Taskforce, as well as starting a relationship with my current boyfriend, who was, and is, HIV-negative.

Having dated someone with the disease, I was getting tested every three months, and in April of this year, my worst fears were realized: the test revealed I was HIV-positive. Even though I had prepared myself for this possibility, I was devastated. My dreams and aspirations would remain just that--dreams and aspirations. I am a performer. I can dance. I can sing. I was supposed to be a pop star, the next icon of the new millennium. Now everything was gone.

I couldnít figure it out. I had been--for the most part--the Poster Child of Safety. Night after sleepless night, I wondered how it could happen, learning as much as I could.

Soon I discovered that you must use water-based lubricant with latex condoms to ensure their durability. I hadnít been aware of this, nor had my partners. My condoms had been breaking, sometimes tearing completely because I was using the wrong lubricant.

I also learned that my tonsils, weakened since childhood, were constantly inflamed and susceptible, thus opening another avenue for the virus. Following the news, I wasnít sure if I wanted to continue my job at the Taskforce--after all, I had just started, and testing people and telling them the results, positive or negative, would be difficult.

I discussed things with my boyfriend. He helped me to understand that my experience, regardless of the personal turmoil it has brought upon my own life, can help others. I have grown since that day in April. I actually feel better than I have in a long time. I do not regret my past. I am a better person because of what has happened, and I refuse to stop growing. I am a Poster Child for Safety again.

There are so many things I wish I could change in the community. I would love to know that everyone used condoms all the time. Men in their 20s still think they are invincible. Older men know what to do, but donít always do it. But the most unsettling myth is the belief that a cure is just around the corner. It is ludicrous to base sexual practices around the "chance" of a cure.

In the past three months Iíve begun praying for a cure; others have been praying for over two decades. We are all still waiting for an answer. In the meantime, weíre witnessing an alarming rise in HIV infections, especially among men my age. The answer is clear: Use condoms, get tested.

For further information about HIV and AIDS please e-mail me at matt4manhealth@hotmail.com, or call the AIDS Taskforce of Cleveland, 216-621-0766 ext. 233. We can talk, anonymously or otherwise. I can even arrange an anonymous testing appointment at a location that is convenient for you. Thank you for taking the time to read my story . . . and please, get real, use condoms!

Matt Schmid is the ManHealth coordinator for the AIDS Taskforce of Cleveland.


 

Remember the affected,
and be there for them

by Bob Bucklew

Time heals all wounds. At least, that is what weíre told. As much as we would all like that to be true, unfortunately itís not.

This fact was reinforced with me recently as I sat down with an older couple--a husband and wife--who wanted to talk about their son. They were pleasant and polite, and by appearances they seemed ordinary--her a little talkative, him more quiet and reserved.

As she began to talk about her son and his death from AIDS, however, her calm demeanor was broken. Her voice trembled as she recounted his last days and his heroic struggle against the disease. She was proud of her son, particularly how he had agreed to participate in experimental treatments that everyone knew would not help him, but just might help others.

She talked of his last day alive. I looked at her husband and saw the tears and pain in his eyes. Their son had died over ten years ago. For this couple, the death of their son is a wound that will not go away.

A young man whose partner recently died of AIDS-related causes expressed his frustration and anger to me at how people have been dealing with his loss. His many friends didnít know how to respond to his loss, so they did what many of us do--they resorted to clichés.

Within a week of his partnerís funeral, he was told to "move on with his life," "to not dwell in the past," and yes, "time heals all wounds." He has been told all about the "stages of the grief process" and "closure." Rather than comfort, these words more often confused him. How long should he grieve? When should he achieve the miraculous "closure" and all the pain be gone? Was he feeling the right things?

We call them "people affected by HIV/AIDS"--those whose loss begins on the day that their loved ones tells them that he or she is infected and whose loss remains even after their loved one dies. Of course life continues--the pain does lessen on a daily basis. But the pain never goes completely away. In Cuyahoga County over 1,500 people have died of AIDS. Multiply this by the number of people who loved them as a son, daughter, mother, father, sister, brother, aunt, uncle, cousin, wife, husband, partner, or friend, and the scope of this disease on our community becomes clearer.

This World AIDS Day, we will remember and honor and, yes, still grieve, for those who have died. Many of us will also rededicate ourselves to the battle against AIDS in their name. But we must also remember those lives that have been inalterably and tragically changed by this disease through the loss of loved ones.

It is not always easy to be around someone who is grieving. We can become inpatient with their emotions and try to give them helpful hints on how to lessen their pain, or we can run away when it becomes too uncomfortable.

What they often need is for someone to simply listen to their story and to be with them in their pain and their confusion--someone who is willing to feel along with them. Itís not always about moving on and healing wounds.

In Cuyahoga County, there are thousands of people who have been affected by AIDS. Let us be courageous enough to be there for them and with them.

Bob Bucklew is the director of health and wellness Lesbian/Gay Community Service Center of Greater Cleveland

 


Living with HIV can be harder
for transgender people

by Chris Coleman

Stephanie Gray initiates one-on-one safer sex discussions with other transgendered people for the AIDS Taskforce of Greater Cleveland. She is a native Clevelander and attended Lincoln West, Tri-C, and a private cosmetology school. She is also HIV positive, educating others in a community that is often overlooked or ignored altogether, a community at significant HIV risk.

Gray sat down to record her story and give a reminder that HIV affects the GLBT community in all its diversity, urging the community to respond with the same diversity of programs and services, so that the needs of all are met.

Chris Coleman: What are some of the difficulties youíve experienced as a result of being both African American and transgendered?

Stephanie Gray: There is always a stigma of not being seen as, well, mentally sound. Thatís still hard for people to see as a sane thing, this idea that I would "choose" to live as a woman. People donít really think of transgendered people as being productive members of society--they donít see me as contributing to my community.

In the African American community, itís hard dealing with the whole "machismo" factor, especially when growing up. The images society puts out there--theyíre not me.

CC: What are some of the difficulties youíve encountered as a result of being transgendered and HIV positive?

SG: Well, you have to start with the fact that as a youth, there were no services at all for transgendered kids when I was growing up. There was nothing, really. You had to make your own way, find other people, and figure out the pieces as you went along.

This had always been true in relation to the medical community. There werenít many doctors out there--there still arenít--who understood transgendered people, who could deal with our medical issues. So when AIDS came along--which was something that at the beginning a lot of doctors also didnít want to deal with--that made it even worse. And there were no support groups, nothing like that.

For a lot of transgendered people, at least historically, we didnít "fit" anywhere: not in the straight community, not in the gay community. So not having a place to go when you were HIV positive and transgendered made it even harder.

Itís also hard dealing with the issue of disclosure, telling people I have HIV. People have said it about coming out as gay, that you donít just say it once, you have to keep coming out, over and over again to different people, your whole life. Having HIV is the same way. You never know how people are going to handle it.

CC: What would you hope to see--changes, programs, services--for individuals who are transgendered and dealing with the issues of HIV and AIDS?

SG: Iíd love to see some kind of buddy system for those younger transgendered girls who are newly diagnosed. People need to know that there are others out there; people who will be there for you, who can help you get through all the barriers.

Education is important, and education from peers works best. The girls are going to hear it better from girls they know and trust, who can give them condoms and information, and support them while they try to stay safe and healthy.

Iíd also like to go beyond just the facts about HIV and safer sex. Have someone from the transgendered community bring together knowledge and experience from the health care and social work systems, and give that information to the younger girls in a way that they could relate to. It canít be just about AIDS, though thatís the thing that we have to focus on most because of how itís hurting the community. It has to about how to live; live healthy and proud and free to be who we are.

For more information on transgender outreach programs at the AIDS Taskforce of Greater Cleveland, contact Chris Coleman, Brother2Brother capacity building educator, at 216-621-0766.


 

Movies in the life

CinnaFest brings black gay films to Cleveland

by Anthony Glassman

The Brother2Brother program at the AIDS Taskforce of Cleveland has worked for years to keep black same-gender-loving men healthy and safe, and on December 4 and 5, theyíre expanding their mission with the second CinnaFest Cleveland International Black LGBT Film Festival at the Shaker Square Cinemas.

Brother2Brother will be taking care of the mind as well as the body, bringing seven LGBT films from the U.S., Canada and Zimbabwe to the North Coast.

Two of the films, both very short, are done without dialogue. Love on Vendome is a lesbian love story shot in black and white which uses jazzy, soulful music to tell its tale. Testing, One . . . Two deals with an interracial couple, one of whom is HIV-positive, as they near their first anniversary.

Welcome to Africville is a documentary about the last days of a colony of black lesbians in Nova Scotia. The community is scheduled for demolition and multiple generations of lesbians tell their stories. The women had set up a space for themselves, a space soon to be lost, and their insights into life and love are touching.

Rainmakers II: Tina Machida in Zimbabwe looks at a charismatic lesbian activist in a homophobic African nation.

Using the South African notion of "no equality, no justice" as an aegis, she has enlisted the aid of many heterosexuals in her fight for equal rights. Zimbabwe is one of a number of African nations whose leaders simultaneously label homosexuality as an ailment caused by colonialism while quoting chapter and verse of the Bible to condemn gays and lesbians, making Machidaís struggle an unenviable fight.

A more traditional drama is Kevinís Room, a tale of black gay men in Chicago. Life in the big city, dealing with work, relationships and all the other things involved in modern society combine with a great cast to create this honest look at these men.

Perhaps the most familiar film in CinnaFest is Living with Pride: Ruth Ellis at 100, a documentary set in Detroit.

Made in 1999, the film looks at the life of lesbian pioneer Ellis, who came out in 1919 at the age of 20. She spent her life building a community around herself, and made it a mission to teach the children who flocked to her about the history they inherit.

Ruth Ellis passed away on October 5, 2000, and this film is a fitting testament to the woman and the legend. She was one of Detroitís boldest crusaders for decades, and her life is a familiar and fascinating one.

It is quite easy to pick the funniest movie in the festival: Whitney: Mamaís Little Baby.

The 30-minute, shot-on-video film is done from baby Bobbyís point of view, with a drug-addled Whitney Houston doing everything horribly wrong, from leaving the baby alone to buy booze to mistaking the odor from the babyís diaper for a stray dog.

Eventually, Dionne Warwick, Cissie Houston, Aretha Franklin and Lola Falana (or at least drag queens resembling them) must come and do an intervention to get Whitneyís life back on track. Marrying Bobby Brown is one thing, neglecting the children is another!

There will be an opening reception on both nights of CinnaFest from 6 pm to 7 pm, followed by the program of films, which range from 6 to 60 minutes. The program will be the same both nights.

Shaker Square Cinemas is located at 13116 Shaker Square in Cleveland. For more information, call 216-621-0766 ext. 258.

 

 

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