I love being the voices for those who can’t speak for themselves and I’m very protective of that. We have to do our research in a very respectful way.
Elder Valerie Nicholson of Vancouver, British Columbia is the winner of the 2018 Red Ribbon Award from the Canadian Association for HIV Research (CAHR).
Nicholson was nominated by Dr. Angela Kaida of the Faculty of Health Sciences at Simon Fraser University. The two first met in 2012 at the start of the CHIWOS study – Canada’s largest community-based research study by, with, and for women living with HIV.
“Valerie stands among our strongest voices and spirits in support and advocacy for the role of research in HIV prevention or treatment,” wrote Dr. Kaida. “To know and work alongside Valerie is a true gift, and a chance to understand the potential of HIV research when done from a place of wisdom and power.”
Dr. Kaida is not alone in her praise of Nicholson, both as a researcher and in helping shape a unified and more respectful voice for Canadian HIV researchers. Her nomination came on behalf of a large and diverse community of HIV researchers, clinicians, advocates, activists and front line warriors across Canada.
“I was shocked when I had heard that I had won it. I had no idea I was even nominated,” said a humble Nicholson. “I’ve been working in the HIV field for a long time, not as long as some people, but for me this is the very first award I’ve ever gotten in the HIV world.”
As a previous research participant Nicholson saw how research could be done poorly. It lacked respect for the lives and stories of the researched and it lacked results in indigenous communities. Valerie was determined to change that.
Nicholson’s experience comes from wearing many hats in her years supporting the community, including as a Peer Research Associate on Women’s Sexual and Reproductive Health, and Criminalization of HIV non-disclosure; Co-Chair of the Board of Directors of the Red Road HIV/AIDS Network; Chair of the Board of Directors and representative for British Columbia at the Canadian Aboriginal AIDS Network; a steering committee member of the Canadian Coalition to Reform HIV Criminalization; a Board Member of AIDS Vancouver and several others.
The hat that may fit Nicholson best and the one she seems most comfortable in is that of “Momma Bear.”
“I was homeless at one point in my adult life. In my fifties and I was an addict and I couldn’t get out of (Vancouver’s) Downtown Eastside,” said Nicholson. “I got the nickname “Ma Bear” because even through my addiction and homelessness I always had that mother bear instinct, because I am a mother and a grandmother.”
When Nicholson started in research a couple of people gave her the name “Momma Bear” because she is fiercely protective of her mothers, sisters, and daughters who live with HIV.
“You don’t screw around with somebody that is a Momma Bear because the claws can come out,” she joked before switching back to a quiet and humble voice. “But I don’t do that very often.”
When she was a new Peer Research Associate (PRA), Nicholson was dismayed by some existing research approaches and terminology, which often reinforced stigma with little respect for the lives and stories of the researched.
This lacked results for her community and did little to transform the lives of women living with HIV in Canada.
“I guess I brought that lense to the researchers that we’re not just a statistic on a slide or a number on a sheet,” remembers Nicholson. “You’re actually talking about me.”
One of the first research projects Nicholson collaborated on asked participants how often they abused drugs. She asked “Why are you putting a label? Why are you assuming?”
“In my speeches I say, ‘I never once abused drugs in my life. I used them to the best of my ability.’ So, why are you giving me that stigma and discrimination?”
That study changed that word “and gradually everyone started changing the word from ‘abuse’ to ‘using.’”
Dr. Kaida says that Nicholson reminds those who engage in HIV research to do so with their minds, but also with their hearts and their spirits.
“To hear Valerie speak is to be awakened to the power of the possibilities of our work, the high stakes and implications, and the strength that love brings to improving health and changing lives,” said Dr. Kaida.
For World AIDS Day 2017, Nicholson says she was honoured to be invited to speak on Parliament Hill. The national dialogue was being focussed on the “end of AIDS,” but Nicholson brought a different message.
She told parliamentarians about the current devastating impact HIV is having on indigenous communities and women.
“We are still dying! We are still being sent to jail! It is a privilege to experience HIV otherwise!,” said Nicholson.
Recently someone asked if she could go back in time and with all all her knowledge of HIV, would she want to change her diagnosis.
“This most amazing feeling of absolute calmness went throughout my body and spirit and the answer is “I would not change being HIV positive.”
In Vancouver, the message that ‘HIV is a manageable disease’ was being used a lot, so Nicholson asked ‘Is it?’”
“Is it manageable if you’re homeless? Is it manageable if you are using drugs? Is it manageable if you’re living with stigma and discrimination every day? Is it manageable if you’re food insecure? Is it manageable if you’re living in isolation? Is it manageable living on reserve? Is it manageable living in isolation in a big city and not just rural?”
Afterwards she was approached by the Executive Director of UNAIDS, Dr. Michel Sidibé, who thanked her for opening his eyes to the realities of life with HIV for many communities across Canada.
“(He) tried to take my speech away from me. He wanted it, but I needed it for another presentation,” said Nicholson laughing. “He photographed it because it really hit home for him and I think it hit home for a lot of people and I got a lot of good feedback from that. I felt I really needed to stand up for what is real.”
It’s that “realness” that many researchers and clinicians have come to rely on, particularly Nicholson’s assessment of the basic worth of our research to communities across Canada.
“I’m still in the community,” said Nicholson. “I have a responsibility when somebody walks up to me and says ‘Hey, you did a survey with me. Whatever happened to my voice? Whatever happened to my words? Did anything come out of it?”
Nicholson started discussions about that and suggested research projects need to have next steps, including bringing results back and letting community have it.
Nicholson’s advocacy has also directly influenced the development of support protocols for participants, including access to counsellors and other resources after study visits.
She says that she used to see a divide between researchers and the community, but now sees them coming together into a circle “where no one stands above or a below and there’s no one behind someone and there’s no one in front of you.”
Nicholson also takes pleasure from sharing cultural education with others in the research community.
“If someone wants information and doesn’t know how to ask I am so honoured that they feel comfortable that they can ask me for those teachings…even if it’s to ask another Elder. ‘This is what you do.’”
Elder Valerie Nicholson is one of our research community’s most innovative, wise, skilled, and empathic members and CAHR is honoured to present her with the 2018 Red Ribbon Award.