Today you will hear the views and ideas of our pozcast guests. And while we respect their expertise, they do not represent the views of positiveeffect.org or the MAP Center for Urban Health Solutions.
Welcome to pozcast. We are created by and for people with HIV. On each episode, we explore what it means to be poz. We challenge the status quo and we share stories that matter to us. I'm James Watson and I'm HIV positive. If you're living with HIV, listen up.
The HIV the AIDS diagnosis actually shook me awake and my spirit I was able to feel my spirit. I think storytelling is very key and healing for all of us.
This is my guest today, Doris Peltier. We have a great show for you. This is pozcast. So in her 1969 autobiography, I Know Why the Caged Bird Sings. Maya Angelou wrote, "There is no greater agony than burying an untold story inside you." And this quote rings true, I think, for many people living with HIV. And on this episode, we are going to talk with Doris Peltier about storytelling and telling that untold story. As positive people we are often asked to share our lived experiences with HIV to educate and inspire and advocate. Speaking our truth through story can certainly be an empowering release. But there are lessons to be learned and pitfalls to avoid. It's not a path for everyone. When I was thinking about this episode, I knew immediately that I wanted to speak to Doris an Anishinaabe mother, a grandmother and great grandmother, and a gifted storyteller. Doris was diagnosed with HIV in the year 2000 and works with the Canadian Aboriginal AIDS Network. And with the FEAST Centre for Indigenous STBBI Research at McMaster University. Doris, welcome to pozcast.
Hello, James. I'm so honoured that you invited me to be on your pozcast. What a cool opportunity here to talk about story.
Yeah, thank you. So you know, storytelling is a term that everybody interprets in their own way. And I'm wondering, how do you interpret the term?
Well, I am Indigenous. I'm Indigenous to Canada. And by that I mean, I'm Anishinaabe, which is one of the nation's - the Indigenous nations, here in Canada. And so I actually come from an oral culture. Much of our knowledge was passed down through story. And you know, and it wasn't different stories. they were more like teachings. So story was used to teach To teach us about life and to teach us about, you know, best practices in life, and all those really cool things. And so I come from an oral tradition, as well. And oral is part of story, as well, in my experience. So that really enriched my experience in terms of telling my story, I also have a background in performing arts, so 25 years in performing arts as a professional actor, and director and dramaturge. That's how I made a living for all those years. And so a large part of the storytelling culture is within performing arts, as well, because it's really about telling stories. So when I was diagnosed at the AIDS stage, that whole trajectory, shifted for me. But I was able to carry the the storytelling skills from my culture and from my profession as an actor of 25 years in Indigenous theatre. And so I was able to carry that storytelling aspect of who I am, and you know, to be able to use it for this HIV journey, as well, you know? So it was a transferable skill for me, and I thought that was really cool. Yeah.
And because I was, you know, I'm a little starstruck, Doris, actually, I know they've had so much experience as an actor and director and playwright and you've also received a Dora Mavor Moore Award for your performance and Thomson Highway's, iconic play, Dry Lips Oughta Move to Kapuskasing, which is fantastic. I han no idea. I had no idea. And you speak about how they're transferable skills and I wonder how has that this extensive artistic and performance background helped you in your work in the HIV field?
Well, maybe the immediate one would be knowing how to use my voice. And also, just that oral tradition, I think it crosses over into our oral storytelling within our Indigenous kind of community and you know, pre-contact and knowledge sharing. So, it was transferable skills, you know, like, at the time that we were doing theater when we started doing theater, I never really talked about this too much. But I was part of the trailblazers within our community in terms of blazing the way forward for Indigenous storytelling in theaters. So that element of storytelling was already there. But I also have to tell you, pre-theater, pre-professional actor, from the time I was a little child like that oral tradition, we lived it, you know, we were surrounded by storytellers. And I think that's why I got into the arts because I was often around a lot of the Elders and they were speaking in, in our language. And they were the best storytellers. Oh, my God, I learned so much just from listening to them, and watching them as well, because they were very physical, as well, in the storytelling, they use gestures and demonstrate what a character is doing using their body. So you know, I kind of grew up surrounded by that tradition. And it was a it was kind of an everyday thing. And yeah, and I remember some of the expressions, and sometimes they'd act like clowns, as well. And I remember when I was in theater, and I trained in different types of training that would increase my my skills as a performer. And one of the trainings I took at one time wasl I took an intensive clown course. And it was a six week intensive. So I went through that six weeks of very intense clown training...beautiful man that passed away. He died from AIDS-related complications about three years ago, and this was my pre-AIDS/pre-HIV days, I met this man who was my my teacher. And we immediately connected and he did this training with us for a clown, and it was six weeks. And so what we did was we did some exploratory kind of work to find our clowns from the four directions.
Four directions, meaning?
Like, north, south, east, west, but he also included above-above, and that's the universe. And then he also included below-below that connection, that clown that's connected to the earth, that's an earth kind of based kind of clown. And then he had developed a training where there was a seven clown. And that was the trickster from Indigenous oral storytelling legend culture, and the seven direction. The seven clown of all those directions was all of those directions.
Okay. All right. This is with the Native Earth Performing Arts, is that right?
Yes, yes. So I took that intense clown training. And then I went home to visit at my father's house. And my father was one of those storytellers I grew up around...Very expressive face and gestures when they're telling stories and stuff. And I told him, Dad, I just finished a clown course. And he says, oh, show me what you learned. So I did these clown turns for him. And he was just amazed. And then I told him, you know, where I get these expressions from? You and Auntie, and all you Elders, listening to you, and to doing your storytelling, and all of that. So, you inspired me, I said, and that's why I'm doing what I'm doing. He was so impressed. Every time a visitor would come into the house, he'd say, oh daughter, show them your clown, your clown turns, and he'd sit back and he'd watch me do a clown turn for visitors. And here I am a grown ass woman right doing these clown turns and but I really liked that he liked it. And I was actually inspired by them. You know, the oral culture that we come from. And all of that is transferable. into the importance of story for people living with HIV. I had a lot of transferable skills already, because I was a trained actor, as well. So storytelling was right down my alley.
Yeah, no for sure that's, that's amazing. One day, you'll have to show me a clown turn, Doris.
Yeah, and my clown teacher, my teacher actually wanted me to become a teacher, and he would have trained me, because he saw natural clown in me. And I had that natural ability. Same with the vocal teacher that came to teach us one time, when we started performing on the mainstage, like in 3000 seat theaters. They brought in a vocal coach to work with us to, you know, do some vocal training with us, and how to project your voice into a 3000 seat theater. And when I did it, he says, you don't need this training, you've got a natural voice, you can project it well. So I'm very thankful to Creater that I have these talents that I have been able to use in my life, and I continue to use as an HIV-positive, Indigenous woman, you know. I hope I I'm able to inspire others to in the work that I do within the HIV movement.
You know, during my research I was reading back in the Saskatchewan Sage, old newspaper. Who I guess you did an interview for and it says that you were still waiting for that opportunity to play Lady Macbeth. And, you know, I wonder, would you return to the stage?
I think about it, because I remember when I made the decision to leave. Well, the AIDS actually made the decision for me, but there were a couple of times, and you know, in that 25 year career when I did leave one time because I had a son that I needed to raise and you know, the life of the of a thespian is not very conducive to, you know, a family. It's very difficult raising a family when you're working as an artist, and you're traveling because of that work. So I left one time, and I remember telling Thomson Highway's, he says, Oh, don't leave, we're just writing this play, The Rez Sisters, I want you to be in it. And I said, No, no, I'm gonna take a break. I'm gonna walk away for a while - I need to raise my son. And then The Rez Sisters took off - it ended up in, at the Edinburgh Festival. And, and I was, of course, I was very happy for them that it just skyrocketed and launched Thomson Highway's career. And I remember I went and saw it in Winnipeg when they were touring across Canada, and I went to the Manitoba Theatre Center where it was playing, and I traveled there to go see The Rez Sisters. Because I was I did the dramaturgy work for that to develop many of the characters that are in Rez Sisters. I developed a lot of the women that are in that play. So I went and saw them. And then one of the women says, oh, Doris, Thomson really wants you to come back. And he's writing another play for you.
And I thought, well, I guess I'm going to have to come back if somebody is going to that effort to write a play for me. And so that was Dry Lips Oughta Move to Kapuskasing. And so, yes, it's been a while-I don't really talk too much about a lot of my background, my professional background. I do have oratory skills, but I think all of those come from my own culture, and the storytellers that I grew up around. And that's how knowledge was passed on, right? We, we are an oral culture as Indigenous people. So that's how knowledge was passed on. There's many cultures around the world that are like that, that are an oral culture, it's not written. And so that's how our knowledge was passed on. And through stories, as well through storytelling. And so a lot of those skills just kind of shifted like a trickster, that shape shifts, you know, and maybe in a way, I feel like a shape shifter in terms of my own life journey, as a storyteller, because that's part of my culture, that's very much part of our Indigenous culture. And in terms of living with HIV and the telling of that story, there was a lot of storytelling that wasn't told through our oral culture. And I realized that when I was diagnosed, that there was another story that we weren't telling and that's the story about the historical trauma...those experiences with residential school and the intergenerational impacts of residential school...And HIV is all part of that, and the way we tell the story. I feel it's really important for people, Indigenous people that are diagnosed with HIV, to learn that history. And to understand perhaps, that trajectory that led to being diagnosed with HIV, for an example, you know, I could link, I could link my story back to all of that, to the fact that there were things that I never talked about in my life, like sexual abuse, child sexual abuse...I never talked about in my life - for most of my life. And I didn't talk about those things until I was diagnosed with HIV. So I was able to tell that...finally tell that story. And come to terms with it.
And what gave you the confidence to tell that story?
I think I wanted to tell it because I felt it needed to be told. And it was part of my own healing process. Because in terms of storytelling, and people telling their stories that are living with HIV, there's a there's a journey in that storytelling. From my perspective, you know, from my own experience, that telling of the story is a healing process. The more you tell the story, the more it starts to change each year. So that story begins to adjust itself to your current life experience and your life journey. So one day, you just wake up, maybe you were telling that story of the trauma and the sexual abuse at the beginning of your HIV journey, but 10-15 years down the road, you're not telling that story so much anymore, because that story has been told. And the telling of the story as...introduced a healing process, right. And that's part of the healing is the telling of that story. And journeying through that story, where it begins to change and become this strengths-based story.
Yeah, that's fascinating. Absolutely.
And it's the same kind of story that needed to be told in terms of the residential school survivors. You know, when the residential school survivors first started to talk about the sexual abuse that happened in the residential schools, it took one leader to actually come out. And he was the national chief at the time here in Canada, to talk about his own experience of being sexually abused in a residential school. And it opened a floodgate. And people started telling their story. And that's, that's when the healing process started to happen. Because when you're telling your story, there's a form of validation that happens by you telling your story. The listeners are validating your experience and honoring that experience. And that's kind of how we look at storytelling in through an Indigenous lens, but it's also transferable in terms of living with HIV, you know. People don't just decide one day to, "Okay, I'm going to go out and have unprotected sex and hope I get HIV." There's other contexts at play there, right? There's a whole trajectory. That's where the stories are important. And that's when when people start connecting those dots...that powerful story begins to emerge and their own healing happens.
Do you remember the first time you shared your story of living with HIV?
Yes, I do. I shared it in the church and to church people, but you know that and they were not judging. Because what I told them was part of my story that I told when I got better from the AIDS-related complications was that AIDS jolted me...shook my spirit. It jolted me awake to really take a look at my own life. And I think because of the sexual abuse experience and all of that kind of trauma that was kind of in my, in my own history, there were things that weren't talked about. And a lot of the people that went through residential school, I noticed this, they're shut down in some ways, they're not able to cry when somebody dies, they've shut down parts of themselves. And I shut down that spirit that I have, as well. So the HIV - the AIDS diagnosis actually shook me awake. And my spirit. I was able to feel my spirit. I think storytelling is very key and healing for all of us. But for Indigenous people, because we come from an oral culture, it's part of who we are.
And what should people consider before they start sharing their lived experience? Do you think?
Well, I think they need to consider disclosure. That's an individual choice. I chose to disclose right off. But I'm not, you know, I'm not pushing that. I'm not pushing people to disclose because that's an individual choice. They could still tell the story, I suppose. But disclosure is a big piece in there. And so that's something that people would need to consider. But I do know there are safe places for you to tell your story, as well. I work with a community, I won't say where, and it's one of the communities that we've always tried to engage in the Indigenous response. So we did a project in this one Canadian city and we engaged these women that are living with HIV, but they're living in isolation. And they're living, not disclosing their HIV - fear of disclosure, fear of what their families might say to them. And they weren't even disclosed to each other. And they weren't even disclosed to their families - to their kids. And I thought, Oh, my God. So I have a special place in my heart for these women. Because I'm still, I could still continue to work with them. You know, there's a bit of chaos and in, in their lives, and it's constant, sometimes...Homelessness, revolving women's shelter door, and, you know, in and out and sporadic access to treatment. And it's really heartbreaking and then we went to the international conference in Washington, DC, and one of the women had come with us, and she had never disclosed to her family. So we travelled to Washington, DC, we raise some money, and we took about 15 women with us to Washington, DC, to the international conference. And in the global village this one woman from this community, who had never disclosed, got on the stage as a co-presenter, and for the first time she disclosed her HIV status publicly. But globally.
That's amazing, isn't it?
How do you feel about that?
I was proud of her. And she was proud. We were all proud of her. Like, wow, we said, you know, you don't disclose at home, but you come over here on an international stage and you disclose to the world. But, you know, those are insular spaces. So disclosure within those insular spaces, and they're safe, right? The safe spaces that we have within the movement where you can disclose because you're surrounded by like-minded people. You're surrounded by HIV-positive activists and you're in a supportive environment. So it's easier to tell your story within these kind of safer communities. But it takes another decision, though, to to go to a community outside of that - the HIV sector.
Yes. So you talked about, sort of the progression of sharing your story, and how you're not telling the same story now as you did, you know, years ago. So I'm wondering where are you now in sharing your story?
Well, where I am right now is, and it's connected to my HIV journey. It's connected to research, of all things. So when I got diagnosed, and I got into the movement almost right away, I found a niche with the Canadian Aboriginal AIDS Network. And I started going to these conferences and I go to a session about somebody doing a research project. So I went and listened. And I started going to mainstream research conferences too, you know, because I'm trying to get as informed as I can, and also looking for, you know, what's out there for HIV-positive Indigenous women, and what kind of support is out there for us. So I go to all these sessions and take in the research. And a lot of the Indigenous research at the time was focused on our traumas. And it was about the regurgitation of trauma, but that's the time period that we're living, so I'm not knocking it. And quite often, it was researchers that were telling our stories. And I thought, hmm, there has been a progression evolution in terms of how that story has also shifted and changed. And back in those early days, when I was listening to research reports, I was and reading research, a lot of those words jumped out at me, you know, like those labels, pathogenic words like "risk factor" and "sex worker" and "druggie", and the focus on that, and I thought, hey, that's not all we're about. We're not all about that. Where's the other stories? And so I began to push back on the research, I began to push back on the language that I was seeing on paper and that I was hearing when people were presenting on their on their research. I would challenge them and say, well, that's not, that's not what we're all about. That's not only that, that's only one piece that you're focusing on. And nothing's being done.
Right? A lot of time...
Yeah, a lot of talk and no action. And so, I did a cross-country consultation with Indigenous women living with HIV and their communities and their supporters and the people who love them. And I did this cross-country consultation tour for 12 months, talking to women. And what I came back with was, we're tired of being talked about in that way. It's time to change that story. Where is the empowering stories about us. And so that's where Visioning Health came up. This whole idea of Visioning Health, I remember I was a board member at the Canadian Aboriginal AIDS Network when I did that cross-country consultation, and I remember going to the E.D. afterwards and saying, this is what I'm hearing. This is what the women are saying. It was almost enough already about the trauma right at that point in the movement. So he connected me to Tracey Prentice and we conceptualized this Visioning Health. And so that's kind of where I'm at now.
So does it- just briefly explain what Visioning Health is just so the audience knows.
Okay, Visioning Health is a movement. It was sometimes let me say that, because really, it is Visioning Health is a research project that started out with a small little research project back in 2010. And we had a small group - three small groups of women that we did Visioning Health with, and it was a arts-based decolonizing, participatory Indigenous methodologies research project. And what we wanted to do was when we- when that was designed when we design that Visioning Health, that very first project was, we didn't want to design it around, you know, hey, here's another helicopter research project...We're going to be extracting information from, you know, the people that participated in this research. We're going to commit to spending an extended period of time with women in this process. And so that's what we did. When we did that, when we were committed to spending that extended period of time with women living with HIV - Indigenous women. they told us, hey, I really like this program and say, hey, this is not a program. This is research. So that kind of informed us where to go next. They saw it as a program in terms of how we did the research...That was arts-based. And it asked questions that were strengthsbased as well, what, you know, what does health look like for you as an HIV-positive Indigenous woman? And how does your culture support that health? What about the gender piece? What does health look like? Through the fact that you're a woman, as an HIV-positive Indigenous woman? So we looked at health, culture and gender? And these were questions, you know, maybe women were never asked, What does health look like for you? Versus what was being asked: Tell me about your trauma.
So we saw around that time that we designed this project, the initial project, the Canadian Aboriginal AIDS Network, had just done a study on the role of sexual violence in the lives of Aboriginal women living with HIV. And I helped with the recruitment for that. And I always kind of, I almost regretted helping with the recruitment, because when they did the interviews with the women at a Wise Practices conference, I convinced the women that this study was important, and that we needed to speak to this issue and talk about this issue, and what role sexual violence had that led to HIV diagnoses, and you know, that whole trajectory. And I felt bad when I recruited the caucus. CAAN has a Aboriginal people living with HIV caucus that meets annually. So I recruited women from that caucus during the conference, during Wise Practices. And then they went for these interviews.
Why did you feel bad?
When they came out, they were so retriggered by the sexual violence trauma, the stories that they told. And it was like putting out these little fires all over the conference. And I told mine, too, but I was so busy taking care of the women, taking them to the Elders, for healing sessions. And so I was busy taking care of the women, because I felt like I had a responsibility. So the reason why I talked about that particular research project, I think that was probably the last time that we ever did that kind of research. It was very raw. It opened up wounds. And when the researchers presented the findings back to us, like two years after that time I was talking about, it was very hard to hear the findings - to hear all the stories that women shared. And it was around the same time that I was collecting this other information and I, one of the comments I made to the researchers was okay, how do we flip this around now?
So that was a real turning point, then, for you.
Yeah, it was a turning point. And I believe there's an element of that when that turning point happens when people are telling their story, right? There's a process of healing that takes place. And then, like, I don't even really talk about my HIV anymore, too much. I talk about the research and I talk about the importance of research. And now I'm working with the Feast Centre for Indigenous STBBI Research and working with McMaster.
Yes. That's very exciting.
Yeah. So I think there's a been a tremendous growth for me in terms of my engagement with research, you know, and of course, it helps that I'm an avid reader. I love to read, you know, I became a reader as soon as I could read, and when I learned English. So, reading a research paper is no biggie for me. And even back then I was reading them and I was able to give critical feedback to the researchers. And I think there was a paradigm shift in terms of the kind of research we were doing within the Indigenous community, where we began to ground our research in strengths-based methodologies. So it's that telling of that story that's kind of looking at HIV through a strengths-based lens. And so I really believe I was part of that shifts.
That's an incredible legacy. I mean, that's fantastic that that's starting to come to fruition.
Oh, yeah, it's, I don't, I'm not a self promoter. I really consider myself a helper in the community, from an Indigenous way, you know, I, I call myself a helper. That I might have a title. But that's what I do is that helper, and it's been quite the ride. And I never thought I would be as excited about research, because research is also about re-search. And there's story in there. There's elements of story. But now we're going into, like with FEAST, there's four pillars of science that FEAST is working with. And in each of those pillars, there's a story. So those four pillars are basic science, clinical science, Epidemiology, and social science. Right. And I think, within the Indigenous community, our entry point in research was in social science, in the area of social science. And there's an element of that storytelling in that. And it's reflective of our oral traditions, and our oral culture. It's a good fit: qualitative research and oral culture. It's a good fit and there's storytelling in there. It's very exciting work and I'm 63 now, and I'm wondering when I'm going to retire.
I'd still like to see that Lady Macbeth though, Doris, I have to say,
Yeah, yeah. Yeah. I know. I like Lady Macbeth. And I also like, from the Tale of Two Cities, Madame Defarge.
Yeah, she was the one that was constantly knitting in the story. And as people were getting beheaded. And I thought, that's a interesting juxtaposition. When I went to high school, I read that book, and it was part of our studies. And I thought, that's very interesting. And I also remember that because I think about the weaving of stories, right? And that's what she was doing.
What a great role.
Yeah. So I think I've led a very colorful life. I remember, I was with these researchers, and we were in Edmonton, and we were, we had a research meeting with one of our sites. And this researcher was a professor at the University of Ottawa at that time. And, of course, Tracey got her PhD at the University of Ottawa. And there was one other person...our helper for knowledge keeper. And we were traveling, and then this professor says, What are the three most outrageous occupations you've had in your life? And I said, Well, I'm not sure you want to hear this, but okay, I'll tell you. I've been a...I was a table dancer. I watched porn for the Ontario government. And what was the third one? Anyways, they were just outrageous. And he says, Are you serious? And I said, Yeah. And explain to me what that was...Well I did a table dance in the play Dry Lips Oughta Move to Kapuskasing, and I had to do research, so I went to Filmores strip club to do some research with some of the strippers there to learn the tricks of the trade. So I was able to table dance and twirl my tassels, oh that was the third one, I can twirl my tassels. And anyways, she just cracked up and then I said, What about you? All the other women were listening. And she says, I forgot what the...the one I just remember is when she said, I was like gynecological tests person. And I said, What do you mean by that test model? She says, Well, I was in university, and as a university student, you know, you take jobs here and there. And I signed up to be a gynecological test model for the medical school, at the university where doctors are learning about different things and they have to learn how to do gynecological tests on women, and they need to learn how to do it properly. And a bunch of us feminists signed up for it so we could teach these doctors. You win.
Doris, you are gifted with story I have to say.
I hope she doesn't hear this pozcast. Oh, I'll give her a heads up.
That's a good place to wrap up, I think. But before I go, I have five lightning round questions for you. You just have to choose one of the two options here. So Lady Macbeth or Wonder Woman?
Acting or directing?
City or forest?
Poetry or novels?
Song or dance?
There we go. There's a little bit about Doris Peltier. Thank you. Thank you so much, Doris. I really appreciate you being on the show. It's been lovely.
Thank you, James, for inviting me.
That's it for us this month. Thanks for tuning in. We hope you'll join us next time on pozcast. And if you have any comments or questions or ideas for new episodes, send me an email to email@example.com. pozcast is produced by the MAP Center for Urban Health Solutions and positiveeffect.org. The Positive Effect is a facts-based, lived experience movement powered by people living with HIV. Technical production is provided by David Grein of the Acme podcasting company in Toronto.