In 1993, at just 22 years of age, Marama Mullen-Tamati was diagnosed with HIV.
While the diagnosis alone was enough to upend Mullen-Tamati’s life, her battle with the virus was about to become a very public one.
“As a young woman, I didn’t want the virus at all, I definitely didn’t want to be thrust into the spotlight,” Mullen-Tamati recalls.
But Mullen-Tamati had little choice. The legal case against Peter Mwai, the man who had knowingly infected Mullen-Tamati and others with HIV, was to become a landmark case in New Zealand history.
Very soon Mullen-Tamati’s became national headlines.
“I had no control over who was going to know,” she says. “I’ve suffered stigma and discrimination for being a woman living with HIV, for being a Māori woman living with HIV, and for being someone who stood up against the person who gave it to her,” Mullen- Tamati says.
She recalls suddenly being labelled as an immoral, drug-using, gay-loving, sex worker. “I remember wondering, ‘Where did this come from?’ It was from living with my status of HIV.”
Mullen-Tamati compares being HIV-positive in the early 90s as living with an axe over her head.
“It was a death sentence; there was no medication, there was no chance of living,” Mullen-Tamati says.
Soon after her diagnosis she was told to forget about having children; the chance of passing on the virus was too high and she wouldn’t be around long enough to care for them. “It was all ripped away from me,” she recalls.
But when medication that would lift the death sentence arrived in the late 90s, Mullen-Tamati knew it was time to reevaluate her life. “Before medication, it was about living to die,” she says.
“I didn’t make plans, I was existing and was just waiting for the axe to fall. I was going to die of AIDS.” Mullen-Tamati says when she realised she had a future ahead of her, she had to figure out who she was as a Māori woman.
It took 12 years, Mullen-Tamati admits, but in 2005 she decided it was time to stop hiding and start speaking up.
The discrimination Mullen-Tamati had endured served as catalyst for the work she has done for more than 10 years now.
Reversing the stigma
“I realised it was very wrong, the way HIV-positive people had been treated and I realised there was a missing voice in the HIV sector,” she says.
“There were strong voices for the LGBTQI community but there was no-one talking for Māori, for indigenous people. I needed to embrace my diagnosis, get up and make it happen for myself.”
“I’m so busy,” Mullen-Tamati says, laughing when describing a ‘day in the life’ of an HIV advocate.
Not only does Mullen-Tamati, who became a member of the NZ Merit of Order in 2017, run INA, her own HIV advocacy organisation for indigenous people, she’s involved in various international advocacy groups.
“I’m very involved in the global movement,” she says.
Mullen-Tamati’s work includes involvement in the United Nations joint programme, UNAIDS – she was co-chair of the Stakeholder Task Force at the 2016 Civil Society Hearing. She went to Amsterdam for the International AIDS Conference – she’s been on the committee since 2006.
Back home, the pace doesn’t slow down for Mullen-Tamati. “I give workshops to organisations [and] iwi … and help educate them using my story,” she says.
Supporting those living with HIV, advocating on their behalf and educating their whānau is a big part of what Mullen-Tamati does on a day-to-day basis.
“There’s a lot of misinformation out there, and whānau often go to the extremes of trying to isolate that person. If you support the person living with HIV to take their medication, then no one is going to get the virus. It takes away the fear.”
In 2018, 125 years since women were given the right to vote, Mullen- Tamati believes New Zealanders are very lucky. “We have more of a human rights focus than many other countries,” she says.
But she says even with all the medical advancement, the stigma and discrimination that existed when she was first diagnosed with HIV is still prevalent today: “New Zealand has a very rosy picture of equality. As a Māori woman I still see things that need changing and updating and the education that’s needed around being a woman in New Zealand.”
She says while we tend to be a liberal and forward-thinking nation, it’s complacent to think everyone shares these views.
“In my field of work I see people all the time that aren’t open-minded.” It’s tough work trying to change ingrained belief systems, Mullen-Tamati admits, and she says doing it in a confrontational way doesn’t tend to work.
“If you want cultures and communities to change hundreds of years of beliefs, you have to hold their hands. You really need to get people to walk in your shoes.”