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Peer leaders from Capital District African-American Coalition on AIDS: (top row, l-r) Donald Butler, Vanessa Johnson, Gerald Timmons. (bottom row, l-r) Maritza Alinato, Richard Hahn, Verna Huggins, Sandra Cabinsen.

photo: Leif Zurmuhlen

Coming Out About HIV
By Darryl McGrath

Decades into the AIDS epidemic, it’s still risky to reveal that you’re HIV-positive–and sometimes risky not to

By any measure, the discussion should have been a routine half-hour in a typical day for a personnel director–nothing Peter Manson hadn’t handled dozens of times before.It was 1992, and Manson was in charge of human resources for a white-collar company in Connecticut, when a manager complained to him about an employee’s performance.

Something’s going on with this kid, the manager told Manson. He’s banged up a couple of the company cars; he’s missing work; he’s late a lot. Talk to him, please, the manager asked.

So Manson called the employee into his office and asked him what was wrong. And then listened as the young man began sobbing. He had AIDS, he told Manson. He was scared, he didn’t want anyone to know, and he was sure he was going to lose his job.

Manson reassured the distraught employee. No one would find out, he told him. The company wasn’t going to fire him. They would try to help him.

The expression “These things have a way of getting around” may not have been coined for the AIDS epidemic, but it sometimes seems that way. Although Manson did everything possible to protect the young man, his coworkers did find out that he had AIDS, and their reaction did fulfill his worst fears.

“When they found out, they would not touch his desk, they would not touch his papers,” recalls Manson, who is now the director of development and public relations for the AIDS Council of Northeastern New York and still finds it wrenching to tell this story. “They were afraid they would catch HIV.”

The young man died a year later, largely alone, just as he had feared.

“His parents knew he had AIDS; they lived in Connecticut, and they would not come to the service,” Manson says. “This was the stigma in those first years. People were afraid.”

Twenty years after AIDS first entered mainstream America’s conscience, and a dozen years after Manson tried to help that terrified young man, those living with HIV and AIDS will say that people are still afraid. And that’s why, for so many in the HIV/AIDS community, it’s still so difficult to be open about their health status. They know that in doing so, they may lose friends, family or lovers; their home and their support systems; and precious weeks and months of their lives when the stress wreaks havoc with their health.

For all the AIDS education in the public schools, for all the mandated workplace training about AIDS, for all the confidentiality laws meant to make it easier, not harder, for people to seek testing and treatment—New York’s are considered among the most progressive in the country—for all those steps forward, people working in HIV/AIDS services in the Capital Region, as well as people living with AIDS, say that disclosing their status has not gotten any easier. It may in fact have gotten harder, as a conservative political movement strengthens in the United States.

“Clients are not willing to come out and talk about themselves, not generally,” Manson says. “They want to maintain a life that is free from some of the things they’ve heard about happening to other people.”

And this reaction affects not just people living with HIV/AIDS, but some of the agencies trying to help them.

“Our clients have a right to live where they want to live,” explains the director of one Capital Region agency, who asked that the agency’s name not be disclosed because it has already moved one housing plan for people with HIV/AIDS when a neighborhood objected, and is trying to avoid the problem elsewhere. “However, if there’s so much community animosity, it’s not safe for them. You win the battle and lose the war.”

They sat around a conference table at the Capital District African- American Coalition on AIDS on Clinton Avenue and told their stories one recent morning: three women and four men living with HIV or AIDS. All are members of the Peer Leadership program at CDAACA, trained to talk to others about AIDS, about ways to prevent it and ways to live with it. The group includes activists and leaders in the local HIV/AIDS community, working professionals and parents. And on this morning, they have gathered to talk about disclosing and protecting their health status.

All three of the women and three of the men are open. And, as all seven quickly explain, the decision to disclose or retain confidentiality has many layers. They describe disclosing to some friends but not others, to certain siblings but not their entire family, or to no one at all.

Their doctors told some of them years ago that they had six months to live—advice so common for people with AIDS that they swap darkly humorous jests about the “six months to live” talk they all heard. But their immune systems beat the odds, long enough to benefit from the powerful new AIDS-treatment drugs that came into use in the late 1990s.

After a decade of waiting to die, they realized that they had to start living again, and with that realization also came the need to address more subtle aspects of their disease. People who have been told to plan their memorial service don’t spend a lot of time wrestling with how their parents will react when they tell them they have AIDS. But people who realize that they may live long enough to die of something other than AIDS start facing issues that reach farther than next week.

“Where I come from, which is Harlem, you could not talk about this,” says Charles Thomas, an Albany resident and African-American gay man who has been HIV-
positive for 23 years. “It was such a fear to even mention that word. What kept me locked in that fear box was I saw what happened to other people who disclosed in my community—seeing people get beat up. It was bad enough you used drugs. But to be positive and to be gay . . .”

Although he is open about his status now, Thomas for a long time trusted only one family member with his secret.

Another African-American gay man in the group, who uses the pseudonym “Gucci,” says his upbringing as a minister’s son, in a deeply religious environment where gay men and lesbians were deemed to be headed straight for hell, kept him from telling his parents that he had AIDS. But when he was so sick a few years ago that he needed someone to care for him, his parents immediately told him to come home.

Yet this man—robust and handsome, confident and established professionally—remains very selective about whom else he tells. Only a few of his siblings know; his coworkers do not and never will.

“When I got the test result back, I was shattered,” Gucci says. “To this day I’m still shattered, because I have to make all my life decisions around my HIV. I want to be in the community. I want my life, basically, and I don’t want the stigma that surrounds AIDS to prevent me from having one.”

For others, dealing with the day-to-day difficulties of HIV and AIDS finally makes disclosure just one more decision in an overwhelming crush of stress.

“I think you reach a point in your diagnosis that ‘I don’t care who knows,’ ” says Richard Hahn, a community activist who learned that he was HIV-positive in 1992. “After being told you’re scum, you’re AIDS-ridden, you’re worthless—I think you reach a point where, pardon my French, you just want to say, ‘Fuck it. I don’t care what anybody thinks.’ ”

The national Centers for Disease Control and Prevention estimates that there are 950,000 people infected with HIV in the United States, and as many as 30 percent of them don’t know it.

“It’s generally the people who don’t know their status that unknowingly perpetuate the disease,” Hahn says.

And once they find out, their real problems can begin. They may use up their insurance or disability, or lose their benefits when they lose their jobs. They may live hundreds of miles away from a hospital equipped to care for them. They may get beaten up by their drug supplier, their partner or their spouse as punishment for being infected.

“It’s something that you don’t say when you’re an addict, because dealers can be very vicious,” explains Verna Huggins, a recovering needle user who spoke at the CDAACA gathering and who learned 22 years ago that she was HIV-positive.

But the biggest problem for many people with HIV/AIDS is the loss of their housing—because they’re out of work, or their roommate has turned them out, or their landlord has caught onto the fact that they are sick and concocts an excuse to terminate their lease.

“We have absolutely had patients evicted over the years, who have been evicted by their roommates, when they took their stuff and threw it out on the street,” says George Clifford, director of Albany Medical Center’s AIDS program. The program takes disclosure very seriously, and includes a discussion about disclosure options and ways to protect partners from infection in the initial treatment of a new patient. “We think the vast majority of our patients are responsible,” Clifford says.

AMC’s program generally recommends that patients disclose their HIV/AIDS status to someone they can trust, because the support can go a long way toward helping them cope, but also recommends that they disclose only if it’s safe to do so, Clifford says. To an outsider, it would seem a no-brainer: Counsel everyone to disclose to their sexual partners. But people in violent relationships don’t always have the option to refuse sex, may not be free to use condoms to prevent the spread of the virus and may face a savage beating if their abuser knows they are infected.

In such cases, the emphasis shifts to helping the person protect their life and escape injury. The AIDS Program will offer such people help in relocating to a safe haven—even if that means protecting them first and dealing with disclosure second. Such are the complexities of a situation that on the surface seems clear-cut. And it is a decision that cannot be taken out of the infected individual’s hands. Doctors and public health officials can notify that person’s known sexual contacts when it is deemed necessary to protect the public health, but only without using the name of the infected person. They cannot disclose a person’s HIV status even to a spouse without that person’s consent.

New York’s laws regulating HIV testing and guaranteeing the confidentiality of that process went into effect in 1989. The premise was that people would be more likely to undergo voluntary testing if they knew their confidentiality would be protected. By extension, they would also be more likely to get early treatment for the infection, treatment for the substance abuse habits that help spread the virus, and education about how not to infect others.

“New York’s confidentiality laws are very stringent—more stringent than some federal laws,” says Nancy Fisher, director of prevention services at the AIDS Council of Northeastern New York.

The law promises that no one can be tested for HIV without their consent and without special counseling. And it closely protects the confidentiality of a person’s HIV status, limiting any medical or service provider from disclosing a person’s status to anyone, except for few specific cases, such as to a doctor who needs it to provide medical care or to the parent or guardian of an infected minor. But underlying all of these contingencies is the original intent of the law: to make people feel safe enough to seek testing, treatment and counseling for HIV infection.

As laudatory as that intent is, it still can’t protect against human nature and the curious person who speculates and gossips. State law does not provide any sanctions against friends and family who disclose a person’s HIV status without that person’s consent. And such indiscretions can be even more damaging in a rural area than in a city, Fisher says.

“The territory we cover is 15 counties—the entire Northeastern New York region—so there really are different issues in the rural areas,” Fisher says. “You might know everyone who works in your doctor’s office. The confidentiality law applies to health and social service providers. It does not apply to the neighbor you run into in the drug store.”

POZ Magazine, a national publication for people living with HIV/AIDS, conducted an informal survey of 500 readers recently that asked them if they thought the stigma against AIDS had increased or decreased in recent years. The respondents reported that it was increasing, says Walter Armstrong, the POZ editor in chief.

“For a long time, I think people felt—and it was—decreasing,” Armstrong says.

Others working in AIDS services say that changes in treatment have made for some unexpected consequences that also make confidentiality more difficult to maintain.

“Medicines have allowed people with HIV and AIDS to live longer, which is wonderful,” says Peter Manson at the AIDS Council of Northeastern New York. “On the other side of the coin, people who are living longer require more services.”

But because so many agencies providing HIV/AIDS services have struggled with flat funding for so many years, it’s getting more difficult for everyone who needs services to get help, Manson explains. People who don’t get adequate services end up being more visible. If they are drug abusers, they’re more likely to be seen pursuing their habits on public streets. If they’re out of work because of their illness, they’re more likely to end up homeless. Thus, by living longer but also needing more help, the HIV/AIDS population more readily becomes a target for discrimination. And all of those factors work against a person’s right to keep their health status confidential.

There may be a whole new group of people about to learn that, because HIV infections in the United States have started to rise for the first time in nearly a decade, says George Clifford at the Albany Medical Center’s AIDS Program.

In the early 1990s, about 100,000 people a year became infected. By 1995, public education about AIDS and increased condom use had lowered that figure to about 40,000, a number that remained stable for years, Clifford says.

Then, in 2003, the number of new infections spiked to an estimated 42,000.

Experts believe the reasons are many: There’s less media coverage of AIDS now, and therefore less public discussion and awareness. Fund-raising for AIDS services has stabilized or declined—the result of a tougher economy and the reality that newer, trendier causes are always on the horizon. But Clifford says researchers also see another reason for the increase.

“I think if you dissect the data and look at who is making up the 42,000, two things stand out: the number of adolescents, and especially adolescents of color, has gone up significantly,” Clifford says. “The second thing is men who have sex with men has gone up hugely. And that has people terrified. We think it’s a lot of younger gay men who didn’t experience the epidemic of the ’80s.”

Because the perception of increased stigmatization against AIDS is widespread, many people working in HIV/AIDS services in the Capital Region counsel a cautious, thoughtful approach to disclosure, preferably with guidance from a trained professional.

“I think you have to be careful,” says the director of the agency that asked not to be named because of public reaction against its work. “I could never tell a person with AIDS, just go out there and people will accept them. I’ve been at too many bedsides of people dying of AIDS whose families would not talk to them.”

In 1990, Support Ministries—a
private, nonprofit group in Waterford that provides housing services for people with HIV/AIDS—received approval for a plan to build a residence for people with AIDS in Waterford. The group bought the site, got its funding and was ready to start building when Waterford amended its zoning to exclude projects such as the one underway by Support Ministries, and then applied the new zoning retroactively and withdrew the project’s approval. Support Ministries sued Waterford and won, in a case that’s now cited in other lawsuits seeking redress for violations of the federal Fair Housing Act. The Ahana House, a 15-bed residence for women and men with AIDS, opened in 1995. Despite the rough start, Support Ministries Executive Director Cheryl Hage-Perez says that the neighbors and village officials are now very supportive of the residence.

Support Ministries next came to Albany. When its Jim Perry Residence for men with AIDS needed to vacate its original, high-maintenance older building, Support Ministries started looking for a new location. After being advised by a city official that it would never get a variance for its first site choice, the agency bought a vacant lot in the 7th Ward. The new building is a two-family structure, which allows it to avoid seeking the variance that would be required for a one-family building under such a use. (Albany’s “grouper law” prohibits more than three unrelated people living in a one-family unit.) It is expected to open in late March, over the objections of 7th Ward Councilwoman Shawn Morris and several neighbors, who could do nothing but watch the construction because the project complies with the city’s building and zoning codes.

Hage-Perez says she changed tactics because fighting it out as she did in Waterford “puts me in a situation where I have a waiting list, and I can’t wait five years.”

The existing units of subsidized permanent residential housing specifically for people with AIDS in the Albany area can accommodate about three dozen clients, Hage-Perez says; she estimates that there are hundreds of people who need such housing.

Morris does not deny being upset about the Perry house, but says objections in the neighborhood have been distorted and misunderstood.

“What an organization may claim is discrimination about the HIV status is often concern about other issues,” she says. “In the discussions we had with people on the street, there was no concern about HIV and AIDS.”

In this case, residents of an already densely populated street felt that the two-family structure was oversized and out of place, even though it met zoning requirements, Morris explains. Neighbors had used the vacant lot that now holds the new building for parking, and felt the loss of that space keenly, she adds.

Most important, Morris says, neighbors have been concerned about the backgrounds of the Perry House residents. Support Ministries has acknowledged that a majority of them will be recent inmates and/or recovering drug abusers, and other neighborhood residents wonder how effectively Support Ministries can monitor their behavior.

Hage-Perez says she understands the concerns, but believes the neighbors will soon be convinced that the Support Ministries supervision of the site can avert any problems. If recovered drug users or former inmates don’t have a supportive place to live, she says, they are far more likely to revert to their former habits.

The link between living with HIV/AIDS and homelessness is a problem around the country, say others working in AIDS services. In San Francisco—the city that was the site of some of the earliest social services programs for people with HIV/AIDS in the country 20 years ago—there are 1,000 units of subsidized rental housing for the AIDS community, and an estimated 13,000 people disabled with AIDS in the city, says Brian Basinger, director of the AIDS Housing Alliance in San Francisco.

San Francisco’s Castro district, once the activist heart of the city’s AIDS community, has now become what Basinger called the “eviction capital” for people living with HIV/AIDS. Although confidentiality laws are supposed to prevent landlords from learning a tenant’s health status, landlords are allowed to do credit checks on potential tenants, and have the right to approve anyone attempting to share an apartment with an established tenant. Landlords have become attuned to certain clues that a potential tenant may have AIDS, Basinger says. An income of hundreds, not thousands, a month is often taken as an indication that the applicant is living on disability payments. If the applicant is a man, landlords will assume that he is gay and has AIDS, says Basinger, who has AIDS and experienced this pressure firsthand when his partner tried to move into his longtime apartment with him.

Both men finally moved to escape the relentless pressure by the landlord, and Basinger has since bought a condominium with financial backing from a healthy friend. He says that hundreds, possibly thousands of people in similar straits end up in single-room occupancy housing, isolated from their medical care and subjected to threats and dangers by other residents. Many are then unable to keep their medications fresh, because they don’t have refrigerators in their bare-bones rooms. Their health slips, and they are more likely to end up hospitalized than living independently.

“And you compound that with the fact that in San Francisco, like in New York and other cities, shared housing is the most affordable housing. And people don’t want to be roommates with us,” Basinger says. “We get ghettoized.”

The AIDS Housing Alliance recently sponsored legislation that became city law Dec. 1 and awards preference to real estate developers seeking condominium conversions for buildings if the building has never evicted an elderly person or a person living with AIDS.

Activists and people working in the HIV/AIDS community have different responses when asked if they can foresee a time when it will be any easier for people to disclose their status than it is now. Some see progress; others see the need to continue to be cautious. But all agree on one point: In the end, it can be the secrecy that kills people with HIV and AIDS and spreads the disease.

Some people living with the HIV virus say that knowing their HIV status helped liberate them from the behaviors that got them sick in the first place, and that newfound freedom made the decision to disclose their status that much easier. They look to a day when people can overcome their shame and society’s reactions against their behavior and seek recovery and treatment more easily.

“It was like a wake-up call for me, about how I was living,” says Verna Huggins, the recovering needle user. “If it wasn’t for HIV, I would be dead. It’s not a death sentence. What’s killing people with HIV is behavior.”

Over and over again, that warning is sounded by people who have tracked the disease, lived with it and fought against it.

“Where secrecy reigns, you will always have diseases like HIV,” says Vanessa Johnson, deputy director of CDAACA, who learned she was HIV-positive in 1990. “I have disclosed from the time I was positive, and that’s what saved my life. When you have to live in a whole lot of secrecy, you have to find a place where you where you can be you, and sometimes that place is not safe.”

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