Being Positive: The Fight Against HIV Stigma

Society

24.07.2019

Being Positive: The Fight Against HIV Stigma

HIV-positive New Zealanders share their stories of overcoming stigma to become community leaders in the fight against discrimination.

Jan Waddell remembers the stringent precautions enforced when a new, little-understood virus spread through England in 1982. She had recently finished her final nursing exams and was working at Severalls Hospital, an imposing Edwardian complex in the Essex countryside. The nurses covered their entire bodies and wore gloves and goggles before treating the sick patients, skeleton-thin and feverish. “We went into the rooms looking like space people,” Waddell says. “The only thing they could see was our eyes.”

The impermeable suits were used for barrier nursing, a form of infection control reserved for the most dangerous pathogens. “We physically couldn’t touch them because we were so gowned up,” she says. “They died never knowing who was looking after them.” At the time, the illness was referred to as ‘GRID’, or Gay-related Immunodeficiency. It would be two years until the cause of the outbreak was identified as HIV.

Waddell, who is Scottish-born and speaks with a strong lilt, is now an Aotearoa-based HIV expert in her 70s who gives lectures to medical students, but in 1982, she and her colleagues didn’t understand how the virus worked. “Of course, once we were told what we were dealing with, then the gloves came off,” she says.

TV news reports in Aotearoa in the late 1980s falsely warned that HIV-positive children needed to be expelled from schools to protect their classmates

HIV is only spread through blood-to-blood contact, unprotected sex, or from parent to child during pregnancy, birth, or breastfeeding (although contemporary medication can lower the risk of transmission to negligible in most of these instances). By the end of 1983, it was confirmed that the virus could not be transmitted through ‘casual contact’ like shaking hands or sharing drinks. Regardless, misconceptions continued.

TV news reports in Aotearoa in the late 1980s falsely warned that HIV-positive children needed to be expelled from schools to protect their classmates and that the virus could be spread by using unclean toilet seats, kissing, playing sports, and swimming in public pools. In 1987, National MP for Invercargill Norman Jones called for the quarantine of all New Zealanders living with HIV. “It’s either them or me,” he said.

Though that hysteria has eased, the stigma endures. A 2018 survey showed that 46 percent of New Zealanders would not want their child to play with an HIV-positive friend, 42 percent would not want to eat food prepared by someone with HIV, and 38 percent would not want to live with an HIV-positive flatmate.

This lingering stigma means many New Zealanders living with HIV today are often discriminated against in medical settings or rejected by their peers. Stigma can make it difficult or unsafe for people living with HIV to openly discuss their condition, especially if they live in rural communities without access to support networks. More damaging is the internalised stigma they inflict upon themselves. Mark Henrickson, an associate professor in social work at Massey University, describes this as “an echo chamber of self-reinforcing shame.”

⧫⧫⧫

Jane Bruning, the national coordinator of an Auckland-based HIV support organisation, Positive Women, believes living in a small country with so few HIV-positive people has made New Zealanders out of touch with the virus. “Because HIV is so low prevalence here, there’s not a lot of education,” she says.

Bruning is trying to change that. A recently printed booklet about HIV and breastfeeding sits on the desk at her sunny office overlooking a bamboo grove in Freemans Bay. It’s one of several that Positive Women distributes on topics ranging from dating with HIV to legal rights. Bruning also helps run the Aotearoa branch of the Positive Speakers Bureau, a worldwide network that provides free seminars in which people living with HIV dispel myths by sharing their personal stories. “One of the most powerful prevention and destigmatisation tools is to have positive people personalising HIV,” she says, referencing an Australian study that found long-term reductions in fear and prejudice among attendees of a Positive Speakers event.

Bruning, 62, found out she was HIV positive in 1990 while living in Tanzania, after her ex-partner died of AIDS-related illnesses. Support networks gave her a “lifeline” when she was newly diagnosed, which is why she pursued a career in the HIV sector. She says helping the community gives back the sense of control that a positive diagnosis takes away.

Organisations like Positive Women and the New Zealand AIDS Foundation can make life easier for those with HIV. But with a lack of funding for effective anti-stigma campaigns, discrimination persists, even among medical profesionals. 

⧫⧫⧫

One day in 2002, Waddell had an appointment with an HIV-positive patient at a clinic in Perth, where she was working as a phlebotomist. Medical advances had extended the client’s lifespan far beyond those of Waddell’s earliest HIV patients and Waddell had been treating him for four years.

Waddell was in a rush that afternoon and wasn’t paying attention while she took his blood. As she reached to dispose of the needle she felt a prick in the webbing between her thumb and index finger. The tip had punctured her skin.

The chance of contracting HIV after a needlestick injury is about 0.23 percent (although sharing needles for intravenous drug use is much riskier). According to one study, there had only been 97 confirmed cases of this happening worldwide as of 2007.[11] Waddell was extremely unlucky. On 5 April 2002, at the age of 54 and two decades after her first encounter with the virus, she was diagnosed as HIV positive.

Within the first weeks of contracting HIV, it’s common to experience fever and fatigue that quickly passes, though some may experience no symptoms at all (in 2014, most people living with HIV did not know they were positive). Waddell’s was a rare case where the initial symptoms were extreme and required hospitalisation. “It was like a very severe case of flu,” she recalls. “I was just really, really sick.”

I can remember when I was a young nurse and how we treated our AIDS patients, and when I look back on it, it’s absolutely terrible.

The young nurse assigned to Waddell would stand at the end of her bed, refusing to go any closer. “She totally fought against having to look after me,” she says. “I know she was terrified. I can remember when I was a young nurse and how we treated our AIDS patients, and when I look back on it, it’s absolutely terrible.”

A study published in 2016 found that almost half of New Zealanders living with HIV have been discriminated against in healthcare settings. Its author, Susan Mundt, worked as an HIV social worker at Auckland City Hospital from 2007 to 2016. “While the medical advances have been outstanding and have transformed HIV from a death sentence to a treatable chronic illness, for some reason the same thing hasn’t happened to attitudes and beliefs,” she says. “I think it evokes a very visceral response in people. It’s not really based on logic or reason.”

Participants said that healthcare professionals often took excessive precautions when treating them, like wearing two pairs of gloves or, in one case, making a patient put on an unnecessary medical mask. Other frequent complaints included inappropriate comments (“You were obviously quite promiscuous, did you give your husband AIDS?” a midwife reportedly asked a patient) as well as confidentiality issues, such as loudly discussing someone’s diagnosis in earshot of others.

Eight percent of respondents reported being denied treatment altogether because of their HIV status (a crime under the 1993 Human Rights Act), mainly by dentists and GPs. Some said they were too ashamed to complain about discrimination because it risked disclosing their status to more people. Those who did complain said the outcome was usually unsatisfactory.

During her time at Auckland City Hospital, Mundt says she encountered multiple instances of illegal discrimination against people living with HIV: a couple rejected by a nursing home, a child expelled from kindergarten, a man fired under questionable circumstances after a colleague reported his status to their boss. “The difficult thing is proving that you’re discriminated against because of HIV,” explains Mundt, who says taking legal action can be complicated. “I think for some people they just give up and it’s in the too-hard basket.”

New Zealanders from African countries with high HIV rates may be especially harmed by medical stigma. “Imagine you arrive, are tested at the border and find out that you are living with HIV,” says Judith Mukakayange, the New Zealand AIDS Foundation’s community engagement officer for the African diaspora in Aotearoa. “That means the first person you encounter in the country is likely a health professional. This person is supposed to support you through this diagnosis and new system you’ve never been in before. If that person stigmatises you in that first instance, it immediately paints a picture of New Zealand’s health system for that person, one that will last and often be shared with others … If you assume that’s how you will be treated every time, you would be discouraged from engaging with [the] health sector.”

Medical professionals are also often misinformed about the virus. Mundt’s research revealed that one woman was told by her GP that she could no longer have close contact with her son. Another was told by a nurse that she would need to have an abortion if she ever became pregnant (thanks to medication, all 96 of the recorded babies born to HIV-positive mothers in Aotearoa since 2008 were HIV negative).

Poor understanding of HIV is causing preventable deaths ... at least four more New Zealanders have died in the past four years because they weren’t diagnosed early enough

Bruning warns that poor understanding of HIV is causing preventable deaths. She holds up an educational flier with an image of Tonya Booker, who died at 48 in 2014 because of undiagnosed HIV. Booker was in and out of hospital for years and underwent unnecessary procedures, including tonsil surgery. “Nobody tested her for HIV because she didn’t fit the profile,” explains Bruning. By the time she was diagnosed, Booker was too sick to start taking medication and died days later. Bruning tells me at least four more New Zealanders have died in the past four years because they weren’t diagnosed early enough, including one woman who wasn’t tested for HIV until she was in a coma from which she never woke up.

“Between 60 and 70 percent of women who are diagnosed with HIV are diagnosed late,” says Bruning, who is currently working on a new campaign to encourage early testing. The face of it will be a Wellington-based woman who is legally blind because she wasn’t treated in time.

⧫⧫⧫

After her diagnosis, Waddell noticed that people treated her differently to those who had contracted the virus sexually. “A lot of people told me that I didn’t deserve this because I was doing my job,” she says. “I wasn’t guilty but they blamed my patient for being HIV positive in the first place. I know they meant well, but it got me quite angry. I told them that, actually, nobody deserves to be stigmatised, regardless of how they were infected. I then became very passionate about the stigma.”

When she moved to Aotearoa to retire, Waddell became a Board Member of Positive Women and joined the Positive Speakers Bureau. She went on to give regular talks to healthcare professionals and still travels to Dunedin each year to present a lecture to second-year medical students.

Bruning tells me that Waddell's advocacy work has been “hugely impactful”. She was influential in the decision of several District Health Boards to invest in retractable needles to avoid injuries. “She’s inspiring,” says Bruning. “She has never kept her HIV secret. She’s always been very proactive and speaks up. She struggles because she’s resistant to most medications and she’s not well, but she just keeps going.”

I was in a better position to come out about my HIV-positive status ... I wanted to be out there so that I could start helping

“I think I was in a better position to come out about my HIV-positive status, and because I was in a caring profession I wanted to be out there so that I could start helping,” says Waddell. Others aren’t able to be so bold.

⧫⧫⧫

For many New Zealanders living with HIV, it can also bring shame or abuse to the most intimate parts of their lives. “It’s easy to be brutal and horrible,” says Wellingtonian Lance Kedzlie, describing what he calls the “faceless discrimination” of online dating. “I’ve always been very open on my profile that I’m positive. There have been a number of occasions where I’ve received really shitty emails from people who I don’t know telling me I should go off and die.”

Like many people who take medication for HIV, Lance is ‘undetectable’, which means the virus has been suppressed and can’t be detected by a standard HIV test. An undetectable person can’t spread HIV sexually, which means they make safer sexual partners than someone who assumes they’re negative but isn’t certain.

In 2016, Campbell Clarkson, a Sydney-based anti-stigma activist, was in Wellington as a guest speaker at a monthly peer-support meetup called +SOCIAL. The event was at S&M’s, a gay bar on Cuba Street, and Clarkson was giving advice on how to deal with trolls on dating apps like Grindr and Scruff.

During his stay in Wellington, Clarkson, who also discloses his status on his dating profile, received messages from men who didn’t understand what undetectable meant. “It was the first time since being diagnosed that I felt abnormal or different to everyone else,” he says. “In Sydney, because everyone’s so open about it, you don’t really have that feeling. You don’t really notice you’re one of the only people in the village.”

A 2018 survey showed that 88 percent of New Zealanders would not feel comfortable having a sexual relationship with someone living with HIV and only seven percent knew that being undetectable prevented the transmission of HIV. Bruning believes this is because the slogan adopted by HIV organisations around the world – “undetectable = untransmittable” – is poorly understood by the general public. “That’s HIV language, it’s not layman’s language,” says Bruning, who is working on a new campaign to make the science of undetectability more accessible. “That bottom layer of stigma is gone, so the next layer is flatting or having a relationship with somebody. So that’s what we need to work on next. It’s about getting rid of that fear.”

Clarkson, 28, grew up moving from farm to farm across rural Aotearoa. As a teenager, he played rugby and joined the evangelical megachurch Arise (a decision he now sees as an attempt to suppress his homosexuality). When he moved to Sydney in 2012 at the age of 21, Clarkson was overwhelmed by the city’s size, humidity and sheer number of openly gay men. He downloaded Grindr, made queer friends and marched in Sydney’s Gay and Lesbian Mardi Gras. When a friend took him on a tour of Oxford Street, Sydney’s queer district, Clarkson checked Grindr and found the closest user was just five metres away. “What are all these gay people doing in this one area?” he thought.

One weekend in 2013, Clarkson slept with a man who said he had recently tested negative for HIV and they decided not to use a condom. “A mistake that I made was being like, ‘Oh yeah, you’ve been tested, great so have I’,” he says. In December, he was diagnosed as HIV positive.

Clarkson remembers “old myths” about HIV running through his head. He worried that being positive would make him undateable and that he wouldn’t be able to have sex, kiss, or even play rugby again. “I wouldn’t date me,” he remembers thinking.

Geoff Rua’ine, a nurse from the Waikato who identifies as Takatāpui, says that not knowing how a romantic partner will react to his status is the hardest thing about being HIV positive. “The general public doesn’t know about undetectable and what that means, even in the gay community,” he says. “There have been a couple who just said, ‘Oh, sweet as, thanks for your honesty’ and I haven’t heard from them again. There’s others that just shut me off completely and split.”

That whole fear of rejection, fear of being seen as dirty or unclean and all that sort of stuff comes flooding back.

Rua’ine used to work for the New Zealand AIDS Foundation and estimates that he has given more than 150 public talks about HIV. He’s open about his status with friends, family, and colleagues and has discussed it on national television, both in Aotearoa and the Cook Islands, but opening up in romantic settings feels different. “That whole fear of rejection, fear of being seen as dirty or unclean and all that sort of stuff comes flooding back. I thought I’d gotten rid of those, but they still quietly sit there.”

Bruning says that fear of disclosing her status stopped her from pursuing a new relationship after breaking up with her last partner 25 years ago, but she advocates for the members of Positive Women to continue dating after their diagnosis. “We’ve got lots of members who are married to [HIV-]negative men and have children and are living really healthy, happy lives,” she says.

⧫⧫⧫

About a year after his diagnosis, Clarkson was scrolling through Scruff one evening while lying in bed with his partner. He noticed that users included a plus sign in brackets on their profile if they were positive, but there was no symbol for undetectability. “What do you think of this?” he asked, showing his partner a new symbol he’d created with a ‘u’ between the brackets. Clarkson updated his profile with the symbol, took a screenshot of it, and shared it on a popular Facebook group for people living with HIV. The post went viral.

The symbol spread to other countries like the United States, Canada, Brazil and Germany. “People have messaged me from places like Florida and said, ‘We’ve just been talking about you at Pride,’” he says. “You’d think that everything had been tried by now. But one random night I just came up with something that started a new conversation.”

Clarkson was interviewed for radio shows and news articles about his symbol. While the coverage was sympathetic, he was startled by the attitudes of some online commenters, particularly on samesame.com.au, an Australian queer-interest news website.

“Stigma is good,” wrote one reader. “If someone were to do a fancy study they might find that as HIV stigma decreased, infection rates increased” (in fact, research shows the opposite is true). Another reader wrote, “There will never be a reduction in HIV infection rates in Australia whilst the ‘left’ keep pushing their ‘let’s not stigmatise those with HIV’ agenda.”

It wasn’t the first time Clarkson had been targeted online. Years earlier, when he came out as gay by posting a Facebook status, friends deleted him and some of his Christian fundamentalist peers warned of God’s judgement.

The HIV community is probably one of the closest communities that I’ve come across ever.

On World AIDS Day, 2015, amidst the media coverage of his symbol, Clarkson came out a second time through a Facebook status announcing that he was HIV positive and healthy. “By that time I had a lot more gay friends as well, so it was definitely overwhelmingly supportive,” he says. “The HIV community is probably one of the closest communities that I’ve come across ever.”

After reading about him, an HIV-positive drag queen sent Clarkson a private message. She wasn’t ready to come out yet, but told him that seeing someone her age be so open about HIV made her feel like she wasn’t alone. While that kind of personal outreach is useful, it still isn’t properly supported by government-funded anti-stigma campaigns in Aotearoa.

⧫⧫⧫

When asked why the New Zealand AIDS Foundation receives no government funding for anti-stigma campaigns, a spokesperson for the Ministry of Health said that the work the foundation does receive funding for – such as HIV prevention and support services – already helps to combat stigma. But Jason Myers, the foundation’s CEO, says that while stigma reduction may be a “byproduct” of this work, its impact is minor.

“Stigma and discrimination are one of the biggest burdens of people living with HIV, so there really needs to be resources committed to tackling that,” says Myers. The lack of funding means the foundation’s work is more geared to supporting the victims of stigma than addressing its root cause.

Although Positive Women receives some funding for the Positive Speakers Bureau, a limited budget for advertising usually restricts their anti-stigma campaigns to posters in sexual health clinics. “People we can afford to reach are often the people who already know,” says Bruning, who wishes she had the resources for billboards or bus advertising. “If we had more money we could reach the people that really need it.”

Myers explains that funding for anti-stigma campaigns would have a flow-on effect for HIV transmission. “Discrimination has a negative impact on prevention because it deters people from disclosing their HIV status,” he says. “It deters people from coming forward for an HIV test for fear of a positive result.”

⧫⧫⧫

For many people living with HIV, the harshest stigmatisation comes from within. “I thought about death a lot,” says Kjel Griffiths. “I felt that what I was doing was wrong and evil and that I was to blame. I spiralled down really quickly.”

Griffiths was diagnosed as HIV positive in 2013. She’d moved back to her parents’ house to help care for her sick father shortly before her diagnosis, and felt she needed to keep her status a secret from her family.

Griffiths grew up in a disciplinarian household on a farm in Upper Hutt surrounded by a rimu forest. “It’s not a city like Wellington where you have the freedom of expression. It’s a pretty hard place,” she says. Though she is now openly Trans, she suppressed her gender identity for most of her life. “I blended in with the jocks. I did a lot of things to try and conform and live up to expectations.”

At the time of her diagnosis, Griffiths was running a landscaping business while helping out at her brother’s wrecking yard whenever she could. Her job there was to fill containers with used auto components and drop off wrecked cars to be crushed at the steel recyclers. She remembers a yard strewn with car parts and empty shells.

After testing positive for HIV, she wanted to open up to her brother about her status. She still hadn’t told anyone about her gender identity, and decided to come out to him as gay – even though she isn’t – because it felt safer than revealing her HIV status. If he responded with acceptance, she reasoned it would safe to tell him the truth.

“His answer to that was to spread it around all of the mechanics and all of the professionals in the motor industry in Upper Hutt,” Griffiths says. She became the target of hateful comments and felt her wrecking-yard coworkers were trying to run her out of town. “There was a lot of threatening behaviour and nasty looks. It wasn’t safe for me, which is part of the reason that I withdrew more and more.”

Her stable relationship with her boyfriend at the time deteriorated and she kept her status hidden for years. “I wouldn’t touch anyone because I felt that I was poison,” says Griffiths, who had no email address or social media accounts at the time. “I didn’t pursue any friendships, I didn’t look to anyone. I just dwelt in my own little world.”

She self-medicated her depression with weed and alcohol. “I would drink until I could no longer think,” she says. “I’d pass out and wake up the next day and live on coffee until it was time to start drinking.” With nobody to talk to about her trauma, keeping a personal journal was one of her only coping mechanisms. “I would write and write and then I could read it two days later and cry and cry and sort of heal myself and keep myself sane.”

Griffiths didn’t believe the doctors who told her that modern HIV treatments could help her lead a long, healthy life. Convinced she was dying, she began to view everyday routines like brushing her teeth and trimming her nails as pointless. Her gums receded, her fillings fell out, and her toenails became ingrown.

HIV infiltrates the body as if committing an intricate heist. It destroys CD4 cells, which act like security alarms by alerting the immune system to trespassers. It also targets macrophage cells – microscopic guards that patrol the bloodstream, capturing intruding viruses and swallowing them whole.

Without treatment, the average HIV infection will remain latent for years, depleting the immune system, but with no conspicuous symptoms until it advances to AIDS. By this stage, the alarms are disabled and the guards are understaffed, allowing otherwise treatable illnesses like pneumonia to ravage the body without a fight. 

But Griffiths, too ashamed to admit she was sick, dangerously weakened her immune system by keeping her symptoms a secret from her specialist even when she would have been eligible for medication. “I was fighting it the best way I could by not acknowledging it,” she says.

Internalised stigma often stops people from seeking support, says Bruning. “People just get on with it and don’t want to communicate or connect,” she explains, referring to members who don’t attend Positive Women’s social gatherings and only use the organisation’s confidential social-work services.

Mukakayange also notices a reluctance to take advantage of the New Zealand AIDS Foundation’s resources, especially among African New Zealanders, who fear being gossipped about. “Being a smaller and more closely connected community within New Zealand, word can travel faster,” she says.

Bruning is also worried about the number of people she sees who are reluctant to take medication. She knows one woman who didn’t want her family to know she was HIV positive so refused to keep pills in her house, even when she became fatally ill. “She just felt so ashamed and basically went into hospital in the end and died,” she says.

Another woman refused treatment until becoming paralysed down one side as a result of toxoplasmosis. In another case, Bruning remembers begging a woman at her bedside in hospital to start HIV treatment to save herself from irreversible damage. “They’re denying themselves a lifeline,” she says.

Self-stigmatisation was just as much of a problem for some of Mundt’s patients at Auckland Hospital. “It’s really entrenched,” says Mundt. “It’s not even just negative people who have these irrational fears. It’s also people living with HIV”. An HIV-positive grandfather once told her that he would hug his grandchildren, but was too afraid to kiss them. “I finally said ‘OK, next time you come in I want to see a photo of you kissing your grandchild on the cheek.’” Another woman didn’t believe Mundt when she explained it was safe to share meals with her family and use the same bathroom. “She felt so dirty,” says Mundt.

⧫⧫⧫

The deterioration of Griffiths’ mental health led her to a state she describes as “the zero place”. “I couldn’t get any lower,” she says. During a routine visit to an HIV specialist at Wellington Hospital in 2015, she broke down and was too distraught to drive home. At the time, Griffiths was taking efavirenz, an HIV medication now understood to exacerbate suicidal thoughts.

After emergency counselling, she started therapy at the New Zealand AIDS Foundation, who offer free sessions to people with HIV. For three years, she met with a counsellor in a room full of house plants, including a three-metre yucca Griffiths donated from her landscaping business. “That’s when I finally started to sort my shit out,” she says. “I couldn’t face the world anymore. It was that sink-or-swim point where if I didn’t do something about it I was dead.” Over time, Griffiths began living openly as both Trans and HIV positive.

In 2016, she attended a Positive Speakers training retreat at a resort in Napier. When it was time for each of the 13 trainees to give a speech about their experience with HIV, Griffiths swapped places with someone who was worried about going first. “I just destroyed them,” she says with a nervous laugh. “They were all just like… ” – she pretends to burst into tears.

“I actually had an emotional breakdown afterwards,” she says, describing how important it was to meet other women with HIV. “It was so profound to feel normalcy and no longer feel like, one, that there was nobody like me, and two, that I was dangerous to be around. It was like the last piece of my puzzle as far as my self worth went.”

The difference in confidence between somebody who is open and out about their status and someone who is hiding it is like at opposite ends of the spectrum.

Bruning is there to watch the transformations that take place over Positive Speakers training weekends. “They come out at the end of it and you can see them, they’re standing up taller,” she says. “The difference in confidence between somebody who is open and out about their status and someone who is hiding it is like at opposite ends of the spectrum.”

One of Griffiths’ first talks as a positive speaker was at her local library in Upper Hutt. “Everyone in the cities knows what’s going on, so my focus is to get the word out into smaller centres.” she says. Even though her “old fears” returned before the event, Griffiths persevered. She took to the stage wearing a red dress, a nod to the red ribbon symbolising those lost to HIV and AIDS, and shared her story to a crowd of 60 – including her parents and family friends.

⧫⧫⧫

Bruning can relate to the internalised stigma experienced by members of Positive Women; she kept her own status a secret for 17 years. “I felt dirty. I felt poisonous. I felt scared,” she says, describing her immediate response to discovering she had HIV in 1990. She received her diagnosis on the seventh floor of a Tanzanian Catholic mission hospital in Mwanza from a tiny nun wearing a white habit.

A series of images on the clinic wall depicted a man who had contracted HIV. In the first picture he looked strong and healthy, but in subsequent ones he gradually became more frail. The final image was of a hole in the ground. “This is what happens when you’ve got AIDS,” the nun told her. “You get smaller and smaller and skinnier and skinnier and then you die.” An effective treatment had not been developed yet, and Bruning asked how long she had to live. “Probably three years,” the nun replied.

The clinic had floor-to-ceiling windows and Bruning remembers looking out over Lake Victoria and Uganda in the distance. “It was just the most beautiful, stunning day out there and then inside this little room was just dark, black fear.” she says. That night she woke up several times, afraid that she was dying in her sleep and worrying what would happen to her six-year-old child if she did. Her partner at the time urged her to keep the diagnosis a secret. “Because the stigma was so strong at that point it didn’t take much to keep me quiet,” she recalls.

“It was absolutely petrifying,” she says, describing her eventual decision to come out on national television on World AIDS Day 2004. She had just started her job at Positive Women and, when the Breakfast Show contacted her asking for a live interview with a woman openly living with HIV, she decided it was time.

“I haven’t looked back from that,” she says. “It’s such a liberating feeling, it just gives you control over your own life. It churns away at your insides, that internal stigma. You’re just afraid of everything all the time.”

“I don’t think everyone should have to be out. What I believe is that people shouldn’t have to be afraid to be out if they want to be. And that’s a lot of the problem, people are not out because they’re afraid of the consequences.” Opening up about your status is like taking a “big, heavy cloak off your shoulders,” she says. “You don’t have to hide anymore.”

⧫⧫⧫

Last June, 150 people attended an HIV Women’s Conference hosted by Bruning near Onehunga. Between medical professionals and academics presenting data on HIV rates and the effects of stigma, several positive speakers shared their stories. Though their experiences were unique, the overarching theme was the same: overcoming profound shame through advocacy work, community mobilisation, and by finding others like themselves.

Afterwards, a group of Positive Speakers gathered in the conference centre’s car park. Among them was Griffiths, wearing a leopard print bandana and bright blue sneakers. A shuttle soon arrived to take them to the North Shore for the annual Positive Women retreat. Before they left, Griffiths told me how much she had been looking forward to the trip. “There’s actually some good things about being HIV positive,” she said.

 

Feature image by 30daysreplay on Unsplash

 

Honour Thy Queer Ancestors: On Queer Progress
Read Time: 18 mins
Rainbow crossings and Pride Parades signal queer progress...
Society
Honour Thy Queer Ancestors: On Queer Progress
By Will Hansen
Waiariki: A Poem About Protecting Ancestral Land
Read Time: 9 mins
An extended narrative poem about protecting ancestral...
Literature
Waiariki: A Poem About Protecting Ancestral Land
By Michaela Keeble
No More White Tears: Do Tragedies That Affect White People Matter More?
Read Time: 11 mins
Why did people care more about Notre Dame burning...
Society
No More White Tears: Do Tragedies That Affect White People Matter More?
By Saraid de Silva Cameron
The Cock Question: On Dating While Non-binary
Read Time: 19 mins
As a non-binary person interacting on dating apps –...
Society
The Cock Question: On Dating While Non-binary
By Ellie Lee-Duncan
Always Something There to Remind Me: On Growing Up Amid Neoliberal Reforms
Read Time: 41 mins
Mary Paul talks to six Generation X Aucklanders about...
Society
Always Something There to Remind Me: On Growing Up Amid Neoliberal Reforms
By Mary Paul
Mana Rangatahi: Young Māori on Standing with Ihumātao
Read Time: 31 mins
Ten rangatahi Māori on what standing with mana whenua...
Society
Mana Rangatahi: Young Māori on Standing with Ihumātao
By Tayi Tibble
Knowing Your Tātai: Jade Kake on hapū rangatiratanga, whakapapa and Ihumātao
Read Time: 12 mins
Jade Kake on Ihumātao and the complexities of the...
Society
Knowing Your Tātai: Jade Kake on hapū rangatiratanga, whakapapa and Ihumātao
By Jade Kake
All of Our Beginnings: Motherhood in the Exhibition ‘M/other’
Read Time: 15 mins
Matariki Williams explores the diverse experiences...
Art
All of Our Beginnings: Motherhood in the Exhibition ‘M/other’
By Matariki Williams