Welcome to pozcast, the show that puts the positive in podcasting. Our program is created by and for people living with HIV. And we're here to explore HIV research in ways that matter. We're pozcast and we're bringing HIV research to life. Today you'll hear the views and ideas of our Pozcast guests, and while we respect their expertise, they do not speak on behalf of the Ontario HIV Treatment Network or Universities Without Walls. I'm your host, James Watson, a person living with HIV and a community-based research coordinator. I'll be your guide for today's journey into HIV research. It's not often you associate research with creative expression or the poetic arts. But today, we're gonna explore the impact of an exciting new research study that blends both in a unique and powerful way. As more and more research studies turn to culturally responsive methods to tell the story of participant experiences, and as they seek to gather and interpret and share stories of people living with HIV in ways that resonate, it is the Indigenous research and the Black, African and Caribbean HIV research initiatives that are leading the way. The Because She Cares study is a great example of this. It uses poetry to share the experiences of African women employed in the HIV response. And while these are the experiences that are specific to African women, they'll resonate with a lot of us living with HIV, working in the HIV sector. Because She Cares highlights the joys, challenges and tensions that we face from being HIV positive, and having multiple roles in the community, and the need for support, as we support others living with HIV through our work. And issues around GIPA, and equity, and social justice are all here and expressed through poem. So let's have a chat with my remarkable friend Lori Chambers. She's currently a PhD candidate in the School of Social Work at McMaster University. She's been part of the HIV Canadian response for over 20 years working as a volunteer and frontline worker and as a researcher, and her doctoral thesis is called Because She Cares. So how did you take qualitative or conversational interviews and make them into poetry? What's your process? How did you how did you do that?
Well, you know, when you talk about conversation, there's a rhythm to it, right? You know, the way we speak often has body language, often our voice goes up and down. So there's a there's a movement to out voice and that, to me is poetic. So what I started noticing, when I started talking with women, because I used oral narrative, which is a common approach that we use for my culture. I'm Afro Jamaica. So when I use oral narrative to gather their narratives—
What do you mean by oral narrative?
It's more conversational than a regular qualitative interview, for instance, I start with one question and then I—we do something called let it flow, where the women take me on this journey, about their work experiences, because that's what the topic was on.
So as they went through it, you know, they would be very emotional. Sometimes I found that they're very excited, anger, crying sometimes they're very political things. And also to their, you know, their movement, they're, you know, shaking their hands, shaking their head—I wanted to find a way to kind of put that in to their narrative. So, I use these different approaches to put in the things that we usually don't see in narrative such as body language. And as I did that, and as I kept on listening to it, I started hearing the poetry within these women's voices. And I felt the best way to honor it is actually to make it poetry. So I started using transcription to put in the rhythm, the flow, and then you know, people's statements turned into stanzas and lines, and then when I read, read it out loud, listened to them and read it out loud. I found that there were natural breaks. So poetry was actually -- the woman led me to poetry or what I say is I found poetry in oral narrative.
Oh, that's really interesting.
So is there something about your personal experience that drove you to focus on this issue in this particular way?
Well, there was there, there's been a lot of experiences where I work a lot in the African, Caribbean, Black community in terms of the response. And one thing I noticed is those particular stories often aren't heard when we talk about response activities or the actual movement in Canada. Also, too, I found that the women's stories particularly they were really rich, because the way they talked about work and care and how it connected was something that I feel that we don't talk about in HIV. We talk about in terms of living with HIV, the women were talking about in in ways like activism, bringing care work back home, like the things they learn here, bringing it back home, the trans-national care they do as mothers and other mothers. But also, I'm also a child of immigrants. And one thing I have noticed is the immigrant experience, often is left out when we talk about HIV, particularly the experience of work, and how sometimes a lot of these women had had lives in response activities back home, and then sometimes gets lost here, or it's found—it's realized in different ways. And I thought that needed to be brought out.
So that's why I did this study.
Right. So talk to me about the—your creativity that so working [laughter]—but working creatively, in such a rational world of research.
It's tough. It's funny, because my first degree is English writing, but it was technical writing, but I've always loved doing poetry and writing and drama. So I think that guided me, but it is the it is a difficult balance. Because right now I'm writing my thesis, which is what I need to do to graduate from school. And what I find is, sometimes the creative voice gets lost in the academic prose voice, meaning I have to speak in a certain way in order to be heard in the academic world. What helped me is community-based research, because in community-based research, it allows us to have what I call the the real person voice [laughter]. And that helps me guide me to be more creative, because that feel that that creative voice is more welcomed in the community world, which is a world I love working in.
So let's have a listen to one of the poems.
So can you set it up for us? And what are we about to hear?
You're about to hear us retelling a poem called 'Listen to Her'. It's a choral poem. It's basically all 10 narrators providing their advice on how we can make HIV related work more care-full work for African immigrant women living with HIV.
Okay, who's participating in this poem today?
It's a group of us. We are a group of people who work in the response, men and women, allies and people living with HIV. And the reason why we've collected together is because we care. And we want to ensure that the words that the narrator's have spoken to us get transmitted and shared, and we can learn from it as well.
Great. All right.
[beginning of choral poem retelling recording] So I asked her, what advice would you give an AIDS Service Organization, or someone else who hires people living with HIV? This is what she said.
Shift your mentality of people living with HIV. Just because we're positive doesn't mean we don't know how to do our jobs. Sometimes you say, we need to empower PHAs to do stuff. And then you don't give us that opportunity to be empowered. How is this empowerment going on when you don't give us the chance?
Listen to people living with HIV. We're the best advisors, we know what's best for the community, and what's best for us, because we are the community.
Work properly with us. This means understanding our issues and consider the issues that we may bring. It's not just the person living with HIV who needs to understand, it may be you as the service provider, researcher, or employer who needs to understand living with HIV and AIDS. Working properly with us means taking responsibility for yourself.
Build our capacity, look at what we bring on board. We don't need the papers to prove what we know. Listen to what we are saying. Listening and learning should go both ways. Not just one way.
Keep safe our information. Make sure you keep everything confidential. You shouldn't disclose our information or status without getting consent from us.
Don't forget, we came to work in HIV AIDS Service Organizations because of the greater and meaningful involvement of people living with HIV. Never forget that. Put something in place for those moments when the work overwhelms us. We live multiple roles, wear different hats. It's very difficult to juggle between peer, professional, peer, professional. We need your help and understanding. So we can balance all these roles.
Support us in our work. What does support look like if I'm a peer? I need a place to debrief. Sometimes I need a place to debrief about you. I used to debrief with my peers. Now that I'm a service provider, and my peers are my clients, who can I debrief with.
Know our health, our health needs. If you're employing us, you need to know what we need to work for you. There may be times when we can't come to work, not because we don't want to work. But because we cannot work that day. Some days, we can wake up and can't do anything, the body just says no that day. And if a person with HIV works for an employer who doesn't understand this, it's difficult.
Understand, you're taking in a person living with HIV. You're just giving us the job with a salary. You're giving us a job because of what we bring to the table. And what we can learn. Understand that in the process, I may fall down, you as an agency should have a strategy or a policy to help me come back.
Be prepared to do capacity building. If you really want GIPA to work, be prepared to invest in capacity building. Don't just employ people with HIV, and then set us up for failure. You might destroy us for life.
Employ us. Give us employment, not just understanding, not just writing our resumes. We want more, we deserve more, we want jobs, help us get off ODSP.
So that is her advice.
Give us a shoulder care for us, the way you first cared for me as a client.
Give us support, have that understanding, accept us for who we are.
Give us jobs, but for us to deliver, support us through it.
Give us opportunities, build our capacity, build your capacity.
And a final piece of advice:
Give us the pay that we deserve. [end of choral poem retelling recording]
I love that last line, "and a final piece of advice. Give us the pay that we deserve."
[laughter] Yeah, like so that was verbatim.
Yeah. What themes emerged for you as the most common from the work?
Um, greater respect. And and I think that respect stems from both being recognized as people who have capacity, and also building that capacity as well. It's a two way street. One thing that came out of the study totally was this notion of reciprocity. Give back and get back. Right.
And what came out of this poem is that the women were feeling they weren't getting as much as they were giving. So they use this poem to actually amplify that message. One thing that comes out a lot in terms of the pay that we deserve, is this whole notion of income security. And it's great to get a job, but if it means that they are still living precariously in terms of on ODSP and and what that what that entails, that can be problematic for some women, so to actually provide them with greater support in navigating that. Also in terms of providing supports in terms of not just working, but moving on up. A lot of the women talked about going back to school, and some of it was an aspiration that they wanted to, to pursue, and others it was to add to their work and having those supports. Also, another thing women talked about is finding greater ways to move throughout the work world and in HIV. But there is also thing that was really interesting is how they talked about being about disclosure. And and I want to talk about that a little bit. Some of the women were quite open about their status and their work, but because they were, quote unquote, peers, but sometimes they weren't necessarily open in all venues of their life. And they were worried that sometimes their work would overtake that need for privacy in some sense. Other times they felt that being a peer, took them away from getting supports, for instance, if they're an employee in an ASO no longer being a client.
In the same way. Or if their friends were now clients no longer having those supports.
So were you surprised at the power of combining multiple voices into a choral poem?
Yeah, I really was surprised when we actually performed and practiced it. We actually have done a performance of 'Listen to Her' at a conference an HIV conference recently. There was five of us and to introduce us we were called the Because We Care Collaborative, where people who work in the HIV response as community and peers who identify as African, Caribbean or Black. So when I actually was listening to five people, five women perform it, what I noticed is how the stories intermeshed, and then how people's voices became loud at particular spots. And then it kind of illuminated the political relevance of telling these poems or telling these stories as poems at a conference, where a lot of researchers who are employers are going to be.
And actually, the reaction was really interesting, because the reaction ranged from, 'oh, my god, she's doing a poem' to 'Oh, that's really harsh' from the things we said. And then, and then some people reacted a day later, after the conference, and actually came up to me was like, 'first, I was just shocked at how you guys did it, and then I was shocked at what you said, and what what resonated for me'. So that's when I realized there's some power, in using arts based approaches like poetry, to share a message that's particularly political, and also one that can actually be told to the message, the message can be made to the people who should hear it.
So what was the participant response then in hearing their own words and poetry and hearing it back to them?
That became really resonant when I actually the process of doing the poems wasn't just me. After I did the deep listening, transcribing it and creating the poems out of people's narratives, I actually went back to the narrator's themselves, the women who I interviewed, and I actually showed them to get their permission, I go, here's your original statements, like their transcript and then here's the poem that came out of it, and I would read it to them.
I did the reading to them in two ways, first of all, for us to hear if it was stilted. Also, to hear, if this was truly their story, or me interpreting it in a particular way.
So it was what we call a member check, but basically allowing them to verify that this still is their story. In some cases, we added to the poem, we added more narrative to it. And other times it galvanized more conversation, which we created another opportunity to write poems. But more particularly, one woman actually said to me, 'I never have received my narrative back to me, I've done all these studies, and never received my narrative back to me', or her story she said.
And I—it shook me and I went woah, how are we doing research that people don't get their stories back?
So what impact do you think projects like these could have?
Well, I think one thing is using creative methods, such as poetry and performance, might allow us to look, think more creatively about knowledge transfer, and exchange or KTE is what we call it. And secondly, trying to find approaches to research that can that can bring the community back, my approach actually was, you know, geared using oral narrative is very much congruent with African and Caribbean culture. And using poetry is something that's strong in both the Caribbean and very much African context. So trying to find methods that what I call her culturally responsive and trying to integrate them as much as possible with the people you were working with and for. Also, too, for me, personally, is kind of finding another voice. That is not just the academic voice or the research voice, was actually very helpful for me, and I maybe think that maybe we need to find ways of doing our work that's congruent with the ways in which we know as, as you know, as I know, as a person of Jamaican descent.
A big pozcast thank you to the members of the Because She Cares Collaborative for retelling the choral poem, Listen to Her, and to the narrator's who helped create this exciting work. And, of course, to my guest, Lori Chambers. [background music] Lori has created a truly collaborative piece of work here and the creativity and collaboration continues beyond the study. A poetry book is in the works as are plans for text installations and a number of oral performances. So thanks Because She Cares for giving us the opportunity to reflect on and connect with a different way of knowing. [background music fades]