Don’t always reveal
your status—here’s why
by Justin Hayford
“Silence = Death.”
Few phrases have galvanized the AIDS community more effectively.
Although ACT UP’s 15-year-old slogan has been reproduced
on countless buttons, stickers, T-shirts and banners around
the world, it has never lost its urgency, especially as HIV
has spread into sectors of society traditionally denied a
voice in any public forum. From the first days of the epidemic,
people living with HIV have spoken out, setting the terms
of their own struggle, helping to bring about a revolution
in health care, media coverage and government decision-making.
And when it comes to ending AIDS, we need all the revolutions
we can get.
But it is important to distinguish
between the political clamor we all must continue to raise
and the personal disclosures about which we must sometimes
be cautious. Although it may sound like political heresy,
sometimes the best thing you can do is keep quiet.
Too often, people with HIV
are erroneously told they must disclose their HIV status to
employers, landlords, school officials or family members.
Worse, they are told this incorrect information by people
purporting to be their advocates—case managers, social
workers or doctors. From the perspective of the AIDS Legal
Council of Chicago, these people are giving bad legal advice.
No law requires you to tell any of those people that you are
HIV positive. The only people who should be told are the people
with whom you have sex or share needles. But otherwise, if
you want to keep your health status to yourself, that is your
prerogative.
So if your doctor tells you
that you have to inform your boss about your HIV status, stop
and think for a moment. Would you take medical advice from
an attorney? Then why take legal advice from a physician?
Stop and think too about the
possible consequences of disclosing your HIV status. Over
its ten-year history, the AIDS Legal Council of Chicago has
worked with hundreds of people who suffered great social harm
for making just this simple disclosure. A gold-coast professional
called his landlord from the hospital to explain that his
rent would be a few days late due to his new AIDS diagnosis;
he returned home to find his locks changed, his possessions
boxed, and the tires on his car slashed. A suburban mother
asked her sister-in-law to take care of her son while she
was in the hospital for an HIV-related condition; the sister-in-law
decided no person with AIDS was fit to care for a child and
refused to give him back. A Chicago travel agent told his
office staff about his HIV status because “they were
like family;” he was fired shortly thereafter when he
took a few sick days.
Many people hear stories such
as these and immediately think, “You’ve got a great
lawsuit.” Truth be told, a great lawsuit isn’t necessarily
better than a home or a job. The Council stands ready to protect
the rights of people with HIV, but we know that lawsuits are
neither easy nor pleasant. Often it is difficult to prove
that discrimination took place; employers, landlords and the
like have learned to cover their tracks. Even if the discrimination
is blatant, there may be no money to collect—either because
the person you’re suing is poor, or because the particular
act of discrimination is not one for which the law allows
money damages. Sometimes, there is no legal remedy at all.
You can’t sue co-workers when they stop inviting you
to lunch. You can’t sue customers when they take their
business elsewhere. You can’t sue your sister when she
refuses to let you hold her new baby.
I don’t mean to suggest
that everyone who is HIV positive should go back “in
the closet.” We must never return to the days of fear
and shame. In the face of societal intolerance, many people
with HIV have bravely refused to keep quiet. Their heroic
efforts have contributed significantly to the struggle against
discrimination.
But no one can be a hero in
every situation. And even the greatest heroes choose their
battles carefully. If you don’t want others to know about
your HIV status, you have every right to your privacy.
You may choose to disclose
your HIV status for lots of good reasons—whether as part
of an important political battle, or as a personal commitment
to truth and openness. But before you disclose your HIV status
for legal reasons, thinking you will be better protected in
the workplace, for example, please call us at the AIDS Legal
Council or speak to another attorney first.
Being open about HIV is essential
to combating society’s intolerance and misunderstanding.
Those with the courage to speak out should be commended. But
true courage is never doctrinaire. Each person should be allowed
to decide if and when it is safe to disclose his or her HIV
status. We must not scorn those who choose to remain silent
in order to keep food on their tables and a roof over their
heads. Sometimes, silence equals life.
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