It has historically been known as a “death sentence”, helped in no small part by campaigns of old that have featured Grim Reapers and the like.
But it doesn’t have to be – and Judith Mukakayange is proof of that.
An administration assistant and health promoter at Positive Women (an organisation that works to support and advocate for women diagnosed with HIV and their families) Mukakayange is also involved with the Puāwai Festival. Taking place at the end of November in Auckland, the festival – now in its third year – draws attention to the diverse experiences of people living with HIV in Aotearoa, and provides safe spaces for those living with HIV to come together and share their stories.
“The first time you hear that you are HIV-positive is probably the scariest thing in the world because the first thing you think of is death,” Mukakayange explains. “After a while you open your mind’s door to the understanding that a positive diagnosis is not the same thing as it was a couple of decades ago – there is life after the diagnosis. Now living with HIV is not so much about the virus as it is about the stigma – that’s what HIV means now, living with pre-conceived stigma and the hesitance one feels when confronting the reality of whether or not you want to share this information with those closest to you.”
Drawing on the festival kaupapa of reflecting all facets of the experience of living with HIV, and making a point to show that HIV has a broader community than the common stereotype of gay men in the 1980s, Mukakayange and Positive Women are facilitating a series of workshops that will be open to those who identify as women and non-binary, all themed around the idea of “voices.”
But the festival is not only about workshops, it’s also about using performance to “reinforce the power of female resilience”.
“The performances are strong interpretations of the stories of women who have been affected by HIV in some way,” Mukakayange says. “In that way they serve as a metaphor for the journeys travelled and obstacles overcome by these women, myself included.”
She says there are a few things she hopes audiences get out of the show. “Understanding, education and belief in how strong and buoyant the female heart can be, especially when it is faced with insurmountable challenges. HIV is still something that carries with it an out-dated and intolerable kind of stigma and I really hope the audience goes home with a mind more open and a heart more free, erasing the stigma that has no place in this day and age.”
No two experiences of HIV are the same, Mukakayange says. But she believes it’s harder on women than men.
“I think it is harder for women because society just tends to judge them through a harsher lens,” she says. “The first thought is ‘oh she must be promiscuous.’ It is very hard for her to get on with life when society deems that about you. It is also harder for women because we are principally more concerned about our families, our children. We lose focus of ourselves and that means losing focus of caring for ourselves whilst living with HIV, a time when we really need to prioritise our own well-being.”
She adds continued stigma around HIV doesn’t help. “People are still ignorant about how HIV is transmitted, and that is what spreads so much of the stigma. You can’t get HIV by sharing food, sharing hugs and sharing a hospital ward with someone else who has HIV. So much of society still does not understand this and that is what leads people who live with HIV to exclude themselves from society. These myths can only be overcome through dedication and commitment, mostly by those who choose to share their stories and be more visible in their community to better educate the world.”
Another way Mukakayange works to fight that stigma is through her work with Positive Women. “The name Positive Women is a play on the word ‘positive’ in that a woman diagnosed with HIV is labelled as being HIV ‘positive,’” she says. “The noun form of the word positive is constructive, optimistic and confident – qualities an organisation such as Positive Women hold as core values towards empowerment.”
Perhaps unsurprisingly, Mukakayange says she’s a feminist. “Feminism, to me, is a state where each woman is free to make whichever choices she deems best for her own unique circumstances without the fear of being judged,” she explains. “I have enabled myself to choose my own path and how I tell my own story.”
Wahine Toa – Performance, presented by b.Terongopai.t Presents and Positive Women, will take place at 7:30pm from Wednesday, Nov. 29 to Friday, Dec. 1 at Garnet Station, 85 Garnet Rd, Auckland. More information and tickets are available at http://garnetstation.com/.Support Villainesse