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
Out About HIV
into the AIDS epidemic, it’s still risky to reveal that you’re
HIV-positive–and sometimes risky not to
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
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.
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
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.
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.
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
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.
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
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.
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.
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.
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.
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.
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.
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.”
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.
a long time, I think people felt—and it was—decreasing,” Armstrong
Others working in AIDS services say that changes in treatment
have made for some unexpected consequences that also make
confidentiality more difficult to maintain.
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
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.
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.
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
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
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
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.
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
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
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