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Enid Vázquez
As she attended the local
funeral of a client, the well-known director of an HIV service
organization in a small town found people rushing up to her
demanding to know, “Why are you here? What did he die of?”
You can get lost in the big
city, but in small towns few people go unnoticed, and everyone’s
business is open to speculation. “They don’t have much else
to do but gossip,” said one rural HIV service provider, who
asked to have their name withheld.
It’s not like city folks
don’t poke their noses into each other’s business. But the
fear of being found out, where everyone knows who you are,
and there’s nowhere to hide, adds stress to the lives of rural
people living secretly with HIV. Meanwhile, the need to hide
adds a false sense of invulnerability to the rest of the local
population, who don’t realize that HIV exists in their community.
Serenity
“People come to the
country for the beauty, the simplicity, the isolation. But
people talk more. Why is he coming home? Why is he getting
skinny? Why does she have a cough?” says Eric Banks, who recently
left his position as a public policy associate for the New
York AIDS Coalition. The association advances advocacy positions
for 200 member organizations, including some from New York
City.
Banks, who was born and raised
in the small town of Unadilla in upstate New York, has been
a longtime advocate for the needs of rural people living with
HIV. As a young gay man and a rural person himself, he takes
special interest in how HIV messages are being provided to
a population that sees itself as invulnerable. “I heard one
speaker say that if you took away New York City and the prisons,
New York state would still be No. 10 in the country for AIDS
cases,” he recalls.
Banks respects the neighborly
value of looking out for one another. The questions people
ask, he says, are “not so much gossip but a tradition of people
taking care of each other.” Still, he concedes that people
are nervous about the potential for breaches in confidentiality,
and that they suffer for exposures forced upon them. One of
Banks’ clients received an eviction notice as a result of
such a breech. He didn’t even know that the receptionist at
his health clinic, located in another town, was his landlord’s
daughter. The receptionist was fired, and the eviction did
not take place while the case was being litigated, but the
client died before the case came to trial.
In the August issue of AIDS
Care, researchers reported finding two types of confidentiality
breaches in rural North Carolina health care settings: blatant
ones like the one above, and subtle ones where healthcare
providers talk about an HIV-positive patient with another
healthcare worker at their own clinic or hospital, which is
allowed by law. (They’re not supposed to talk about a person’s
HIV status with another institution unless given permission.)
Of the 15 positive people they spoke with, the majority had
experienced a breach of confidentiality themselves or knew
of someone else who had.
Banks remembers being unable
to leave voice messages or send mail to clients who were afraid
that their children might learn of their HIV status. People
who saw someone they knew at an educational event would “be
a mess” even after the person said over and over that they
wouldn’t tell anyone. One client went to great lengths to
circumvent the benefits manager of her company, who was a
friend of her father. Another woman lives in the same town
as an HIV specialist, but travels two hours away to see a
different doctor so the word can’t get out about her HIV.
“There may be competent
healthcare workers in your area, but they—or their staff—may
know your relatives, so your confidentiality is not assured.
Even though you have legal recourses, by then it’s too late.
No one wants to be shunned in their own community,” Banks
says.
Debra Patterson, who works
with the Madison County AIDS Program in rural southern Illinois,
says many of her clients are fearful of being exposed. “They’re
afraid… of rocks being thrown at their house, of being run
out of town, of people not talking to them.”
Banks says people “rightly
fear” HIV because they have no exposure to it. “People in
New York City are more aware of HIV. They see more billboards.
But you can be in upstate New York and never see a single
one. Fear comes from lack of exposure.”
Mosquitos
Lee Fallon, the director
of the Catskills Rural AIDS Services in Oneonta, New York,
says she was “amazed at what students didn’t know, and what
they thought they knew that wasn’t true. And these were college
students. They’re still in the mosquito and deep kissing area.
They also have the misconception of a cure, that there’s nothing
to worry about.”
Patterson also hears about
transmission myths that were long ago dispelled by the US
Centers for Disease Control and Prevention. “People ask me
how come they can’t get it from mosquitos. When I tell them,
they say, ‘The government doesn’t know everything. It’s a
new disease.’ No matter how much I try to educate people,
they’re still going to believe what they want to believe.”
There are other misperceptions
as well. A member of a sorority where she spoke said Patterson
“didn’t look it [infected].” “I told her that was the point,
you don’t look it.” An elderly woman told her, “You can’t
have AIDS. You’re fat, and you’re just getting fatter.”
Small, but not safe
For all the concern
over gossip and rumors, there wasn’t enough of it to protect
Patterson. Ironically, she moved from Los Angeles to rural
Illinois, where she got HIV. After learning of her infection,
when she told her boyfriend’s parents that he had HIV, they
said, “We kinda knew.” Patterson’s older son, who was in high
school at the time, said, “Mom, we had heard that rumor [that
the boyfriend was HIV-positive] a long time ago.” She now
knows of five other women who were infected by this same man.
Yet, when she tested positive
five years ago, “I just remember thinking, ‘Oh my God. I must
be the only one.’ The counselor told me, ‘You would not believe
the numbers that are in Madison County. More than you would
think.’”
Last year, when she began
working for the Madison County AIDS Program as a treatment
educator and advocate, as her new boss drove her around she
would point out streets where clients live. “I know someone
there and over there and down here,” and on and on.
And as she works with positive
clients, she hears the stories of risk. One young woman in
another town tells her of a group of people sharing needles,
and of one guy with HIV sleeping around. Another woman told
her of meeting two men through the Internet, traveling to
their states and having sex with them without telling them
she’s HIV-positive. Patterson herself sometimes finds that
men walk away when she tells them of her HIV, but three men
still wanted to have unprotected sex with her. She walked
away from them.
In the early days of the
epidemic, many small town people who had moved to the big
city returned home when they became ill with HIV disease.
But today, says Banks, “There are still some people ‘coming
home,’ but the majority of infections I hear about now are
in people who’ve never left.”
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