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Living with HIV: 'We are not criminals'

Living with HIV: Imagine a world where you have to save condoms in the freezer every time you are intimate, or where you run to the doctor every time you want to have sex. This could become a reality for approximately 80,000 Canadians. And that number is growing every day. - Cover illustration: Grant McKenzie with photos from Thinkstock
Living with HIV: Imagine a world where you have to save condoms in the freezer every time you are intimate, or where you run to the doctor every time you want to have sex. This could become a reality for approximately 80,000 Canadians. And that number is growing every day.
— image credit: Cover illustration: Grant McKenzie with photos from Thinkstock

Positive Canadians fear new supreme court ruling that is intended to protect will end up causing even more harm

Imagine a world where you have to save condoms in the freezer every time you are intimate. One where you have every potential lover sign a form stating you disclosed your HIV status before things got serious, or where you run to the doctor every time you want to have sex, just so you can get a printout of your viral loads.

This could become a reality for approximately 80,000 Canadians. And that number is growing every day.

A person living with HIV must now disclose their status to all sexual partners unless a condom is used and the person has a low viral load, according to a recent ruling by the Supreme Court of Canada. This specific combination, which now leaves no wiggle room and challenges people to find ways of providing proof, is what critics are saying carries disastrous implications for persons living with HIV — and, potentially, every Canadian.

“Criminalization is not an effective way to stop the spread of HIV, and should be reserved for the most blame-worthy of cases,” says Katrina Jensen, executive director of AIDS Vancouver Island (AVI). “Everyone has a responsibility to protect their health, but this new ruling puts the onus entirely on the person living with HIV.”

On Oct. 5, after the ruling was made, the courts decided to uphold the acquittal of a Quebec woman who was charged with assault after her partner claimed she had not disclosed her HIV status the first time they had sex. Despite the fact the woman had originally charged her partner with aggravated assault after a long and abusive relationship, charges against him were dropped when the courts learned of the man’s claim. The critical issue in the trial was whether or not a condom had been used, though the judge found both parties unreliable. At the time,  the woman’s viral load was undetectable.

A criminalized disease

In 1998, the Supreme Court ruled that all persons living with HIV must reveal their status to sexual partners when “a significant risk of transmission” existed. The ruling has been met with criticisms around how disclosure can be proven in a court of law, and advancements in medial science, treatment options and understanding of the disease demanded an update in what counts as “significant risk.” While Jensen says clarification is usually a good thing, the complex change has ignited concern in groups from AVI to the Canadian HIV/AIDS Legal Network, which is calling the ruling “a cold endorsement of AIDS-phobia.”

“This blatantly ignores solid science and opens the door to convictions for non-disclosure, even where the risk of transmission is negligible, approaching zero,” states the Legal Network. “Criminalizing HIV non-disclosure in this way creates another disincentive to getting an HIV test and imposes a chill on what people can disclose to health professionals and support workers.”

That threat is of special concern to members of AVI, who worry that the court’s ruling may pose as a false sense of security that the criminal law will protect people from infection.

“The real danger of this law is the illusion that the courts can protect you — in reality, only using a condom will,” says Eric Berndt, communications officer at AVI. “No other communicable disease is being criminalized in this way, and we have to ask ourselves as a society why we are doing this, and where this could lead.”

The jail bars of stigma

Dawn Clouthier was 36 when she learned she was HIV positive. It was 1994, and she still remembers asking a friend to come with her to get her results. When the doctor entered the room, he didn’t sit down or even close the door.

“He stood in the doorway and told me, ‘You have HIV,’ and everyone in the waiting room could hear. I ran out of there crying,” says Clouthier.

Now, Clouthier, 55, is aiming to be a spokesperson for people living with HIV. She’s done a lifetime’s worth of volunteer work with the Vancouver Island Persons With AIDS Society (PWA) and AVI in educating the community, and has even taken an apprenticeship at a funeral home to get over her fear of dying.

Back then, though, she recalls praying to God to take her life. She was living on the streets, using drugs heavily and, with new knowledge of her HIV status, trying to overdose her way into an early grave. Luckily for Clouthier and the community, it didn’t work. Her daughters, who she had previously lost in court, became her goal for surviving. Then, her granddaughters. Now, 19 years after a diagnosis that gave her only a few years to live, she hopes to live to see her now-teenage grandchildren have babies.

“It’s almost the first thing I tell people when I meet them — the fact that I’m HIV positive,” says Clouthier. “So for a relationship to go any further, they already know going in. But now, with this law, I think I would have my next partner sign something saying I disclosed.”

Clouthier may be forthcoming, but that doesn’t mean she’s not met with crippling stigma. She says she’s had people slam doors in her face, she’s been denied jobs, she’s even had people follow her around a house with a bottle of bleach, spraying everything she touched. A week ago, in the elevator to AVI, a man asked her where she was headed. When she told him, he asked her to step away from him.

Those misconceptions were even more rampant when Romari Undi was diagnosed in 1986. It was a dark secret she kept to herself for years after finding out, especially when AIDS jokes started surfacing.

“I was absolutely paranoid that I would give it to someone back then,” says Undi, who, at 58, has outlived the days of toxic-drug cocktails and little-to-no information about the disease. “I was at work one day when a co-worker bounced up to me and asked to borrow my new lipstick. I just froze, and then she grabbed it from my hand and chimed ‘Don’t worry, I don’t have AIDS or anything,’ and ran off with it.”

Undi, who had lived in Africa and was married to a Zambian, was part of the first wave of women diagnosed. She now volunteers as peer support at PWA, speaks to other diagnosed women and writes for magazines on the topic. While she says she does not plan to have any other partners, she is devastated by the legal change and the ignorance it shows.

“HIV-positive people are not trying to go out and infect people. We understand our virus, its capabilities and how we can be safe and keep others safe,” says Undi. “We are everywhere in your community, but mostly we are in hiding because of the way in which so much of society still views HIV and those who carry it. This law only serves to continue these ignorant and outdated views and to isolate us further.”

The deepest irony, Undi says, is that a law meant to help women will end up hurting them.

“Many positive women are now afraid of being falsely accused. Our lives are no longer in jeopardy because of this virus, but we are now more at risk of imprisonment and being labeled as a sexual predator from prosecutions driven by ignorance and prejudice,” she says.

Dale and Jason, who prefer to remain anonymous, are a serodiscordant couple. That means one partner, Dale, is HIV positive, while the other is negative. This dynamic takes protection and understanding, yet the two men have been happily together for 13 years.

Still, they have no signed agreements stating at what point Dale disclosed his status. They don’t save condoms in the freezer, marked by date and time as some HIV-positive people have resorted to doing for their own protection. And Dale has his viral load checked just once every six months — between three and six months is common.

“In this community, especially in years past, you have to assume everyone you sleep with is HIV positive, because you just don’t know — even if you talk about the person’s status, which you may or may not, you never really know, so you protect yourself,” says Jason. “There is a personal responsibility here.”

While Jason and Dale both believe that the law’s initial attempt was to protect people, the results put a marginalized group at more risk.

“Any time a person with HIV is in the paper, they are portrayed as this dangerous ‘sex monster’ who is trying to infect people and, aside from a rare case, that’s just not realistic,” says Dale. “There are so many reasons when and why people choose to disclose, and why they don’t. The law just can’t cover it all — and now we are having courts decide whether or not condoms were used.”

An estimated 26 per cent of Canadians living with HIV are unaware of their infection — approximately 17,000 people, according to the Public Health Agency of Canada. Interest groups throughout Canada fear the change will deter people from being tested, and promote an ignorance-is-bliss model of behaviour, with even the recent catch phrase cropping up: “Get the test, risk arrest.” In Victoria, the Island Sexual Health Society sees over 20,000 clients a year, many of whom opt for STI testing. While the group does not track any statistics to show the number of STI and HIV tests taken, and does not take a position on the legal decision, it has maintained a campaign to raise awareness of the importance of being tested.

“We do encourage all people to get tested, and to communicate with their partners,” says executive director Bobbi Turner. “We tell them the reasons it’s important, but it truly is up to the individuals to make a decision, and we stand by them on that.”

Vancouver Island Health Authority (VIHA) Medical Health Officer Dr. Dee Hoyano is disappointed by the Supreme Court’s ruling, and adds there is a great need to get more information out to the public.

“We have consistently not seen the criminalization of those living with HIV as a positive thing,” she says. “The court’s ruling won’t change how we deal with cases, but … there needs to be a clear distinction between what counts as assault versus risk. We need good information out there about what reduces risk ... This may not be an effective ruling to reduce that risk, though it’s still early to know.”

In the meantime, people in the community are doing what they can to aid in understanding. Undi recalls one instance, where she was sitting beside a man on a train to Montreal, when her status came up. He told her he had never met anyone with HIV before, and was curious. He asked her questions the entire train ride.

“When I got home, I remember finding an email from that man thanking me for taking the time to explain it all to him, and I knew I had really made a difference,” says Undi. “I’m feeling really good about living openly positive now, and I want to encourage more people to come out of the shadows. We are not criminals.” M

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