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Don't Always Reveal
Your Status -- Here's Why

March/April 2000

"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 healthcare, 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 monetary 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.


This article was provided by Positively Aware. It is a part of the publication Positively Aware. Visit Positively Aware's website to find out more about the publication.
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