SE2EP13: ACB immigrant women living with HIV: creatively mobilizing to educate and excite...
3:22AM Jan 26, 2022
aids service organizations
Today you will hear the views and ideas of our Pozcast guests who are eager to showcase their expertise and provide a platform for their views. But they may not always reflect or align with the views of the Positive Effect, or the Map Center for Urban Health Solutions.
Welcome to Pozcast we are created by and for people living 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.
You're all gung ho, you're you're, you're ready to go. And then COVID hits.
What happens? What happens to because she cares?
Uh, well, I that's the thing I submitted a postdoc based on us doing this. And I'm like, what do we do? And I thought it might only be two months will still play in this? Well, no. We have to think, what are we going to do now?
We have a great show for you. This is Pozcast.
February is Black History Month. And it's a perfect opportunity for us to revisit and celebrate, the Because She C ares initiative. African, Caribbean and black HIV positive women have always been at the forefront of the HIV and AIDS response in Canada and those of us engaged in the movement. We all know it, we see it in our day to day work. But their engagement as paid workers is not nearly recognized enough.
Because She Cares in case you aren't familiar, started as a qualitative research study, and uses performance and poetry to share the stories of African Caribbean and black immigrant women employed in AIDS service organizations. And it highlights some pretty emotional and serious issues around employment, but in beautifully crafted and dynamic, creative ways. I mean, it's not often you associate research with creative expression or the poetic arts. But this is why Because She Cares stands out and why so many people are drawn to this work and why it keeps growing and thriving.
We originally recorded on this study back in 2017. But so much has happened in this world since then. And it feels like a lifetime ago. COVID Well, that happened. It's still happening. But so is Because She Cares. And somehow, a poetry anthology book got published, and 12 short films are soon to be released. So before we revisit the 2017 episode, I caught up with my friend, Laurie Chambers, the Because She Cares founder, project director, producer and co author and frequent contributor to Pozcast to get an update on all things Because She Cares.
Laurie, Hello, how are you?
I'm good. How are you? James? Long time no, speak.
I know, I'm good. I'm good. Now, last time I spoke to you on Pozcast was about five years ago.
You were I know you're a PhD candidate in a school of social work of McMaster University. And Because She Cares was your doctoral thesis, and a lots happened since then. So before we dive into Because She Cares, why don't you tell me a little bit about your journey... like you graduated, you're a doctor now. What's that like?
Yeah, so it's the same in terms of community based research. They say don't think that just because you're a doctor, that things have changed. But it gives me some credibility for applying for grants, which is good.
Um, and even though I've left academia for a while to work in public service, I came back to do a postdoctoral fellowship at the University of Toronto. And I use that fellowship to revisit Because She Cares.
Oh, so what is a postdoctoral fellowship?
Sound like a cult.
It is somewhat so yes, a lot of people use postdoctoral fellowships to prepare them for academic life. It's like academia. It's like professoral training with the training wheels on.
So you get mentorship by someone who is already in the professor it in some cases, you get to work alongside of them on the project where you You're, you're a co lead on that project, I was lucky enough to get someone who encouraged me to actually revisit Because She Cares. So I do some work with her, but I advise her on on some key based research activities. But the main thing I do is Because She Cares and translating it into an educational kind of Yeah, Performance educational intervention, quote unquote, I call it workshop. I call it intervention. When we look for funds, I call the workshop when we're not.
Okay, so so when you left academia was, Because She Cares sort of on hold until you came back?
Not really, it was slowed down, though. Yeah, we actually ended up doing some performances. So basically, as soon as I submitted my thesis, saying that, Yay, I'm finished. The next week, we actually did the performance. And we did yeah, we did a performance with about 80 people. And there was really people who worked in AIDS service organizations, but also, it was amongst artists and some researchers. And in talks with them, they suggested to keep on going, but to not just do the play itself, but to also have dialogue, go with it. So I was able to get some funding from women college hospitals, these have something called the exchange and women's exchange, and it was it gave us some seed funding, that allowed us to do a couple performances in ASOs in the GTHA.
So AIDS Service Organizations? Yeah?
Yes, AIDS service organizations. And associated organizations, we did one AIDS service organization in Niagara Falls, and one in a community health organization in Toronto. And those two events, we would followed by what we call kitchen table talks, which is post performance, we engage the audience, we split them up into smaller groups, and we engage them in a dialogue, to talk about some of the themes that came about, and what really resonated with him the play, and how might we use the teachings of the play to encourage people to take action to ensure the the care and well being of African Caribbean and black women.
So we did that. And what we found is, when we did it with women with lived experience of it, African, Caribbean, black women live with HIV, they talked about certain things, when we did it with people who call quote, unquote, allies, people who are ACB, but not necessarily positive. And also people who are not ACB, not positive, but we're in the sector, we got different reactions. And we thought hmm that's really interesting. Maybe we should do this, again, where we actually target these three different groups, and see, you know, what really resonates with them? And how might this be an actual educational tool that addresses not just HIV stigma, but also intersectional forms of oppression, anti black racism was coming out ableism was coming out, and also credentialization of Canadian credentialization. So stuff like that was coming out. And what was really interesting was see how different people saw different things, and also how they reacted. And I thought, let's do this again, but be targeted. So I applied for a postdoc, and someone told me to apply for a postdoc. I did. Got it started writing, this is what we're gonna do. And then March 2020. So plans had to change,
Right? Yeah, right. Okay. So before we get into that monolith of COVID, and all that, and the grand pivot, I want to talk a little bit of how you're defining Because She Cares, because I never know what to call it anymore. Is it a research study? Is it a collective? Is it an initiative? Is it a project? Is it performance art? Or is it all of the above
All the above? We call it a project for simplicity sake, but what it's two things right now, one thing is called as a integrated knowledge translation and mobilization project.
Oh, okay. Just that's a lot of words.
It's a lot of words. So use acronyms. What integrated stands for is that we integrate the process of knowledge sharing and knowledge mobilizing throughout the whole project. Translation is we take research findings and translate it in a way that can be disseminated for audience receptivity. Mobilization is we don't just share it. We do something with it. And that something is either we use it to educate, to excite, to incite to activate.
Love it. That's great. Love that great explanation. Okay,
Thank you. But, a lot of people thought like you big words, big words. So we thought it's actually education because what we do, especially the kitchen table talks, is actually mobilize knowledge to get people to not only be aware of some of the issues that come about for African Caribbean, black women who work in the sector, but also get them to really be troubled by it and see what can we do about it? So we thought, you know, what, why don't we talk more about why this is educational? And, you know, what are the theories that actually support why this is working? Why, you know, African Caribbean, black women who have lived experience of this as women living with HIV, say, these are my stories, and this is really connects, I'm really more aware now how I feel like tokenized or silenced, or why allies would say, you know, what? oh my god, I never realized I do this. I really have to be mindful.
Right. So let's, let's circle back to that March 2020. You're all gung ho, you're, you're, you're ready to go. And then COVID hits. Yeah, what happens? What happens to Because She Cares?
Well, I that's the thing I submitted a postdoc based on as doing this, and I'm like, what do we do? And I thought it might only be two months, we'll still play this. Well, no.
You know, when we talk to like a year prior, about how we could continue the project, we did talk about doing film. We talked about more to ensure that people outside like we didn't always have to perform it, like find money for travel. So we thought it might be a way to reach people abroad, like our people in Calgary people in other regions where this phenomena is really relevant. But then we have to revisit again, we had to say, Okay, if we use film, how can we use film? And how can we do it during a pandemic? So start talking to filmmakers, you know, some mentioned using animation, because we already did have some illustrations with the work. But then I actually talked with Roseanne Bailey, she's not only a visual artist, but she's also a filmmaker. And she said, why don't we find a way to make it work. And then when restrictions got to a point where we can actually do some filming, we'll do films with one or two people. And that will keep us within the limits. I thought, oh, that's genius. And then she said, Why don't you instead of doing a big film, do shorts, she said spoken word performance is what makes it so strong. Keep that in there. But just do little short films about, you know, a certain amount of the poetic retellings that you have.
Right? So you're staying, you're staying with those particular poems, you haven't expanded that repertoire, right?
Not yet. Now, we basically have a roster of I think, 32 poetic retellings or poems. Of those some were chosen for the play. For the film, we kept to most of them, but some others were chosen, because they illustrate a certain themes that we felt were illustrated in the play, but had been talked about in kitchen table. Yeah, so in the end, it wasn't me. It was a group of ACB women living with HIV, who actually selected they said, these are poems that I would like to see translated into film.
Right. So where are you in that process? Like, do you have the films made?
Yeah, it was quite a journey we have the films made, we are actually planning to showcase them. We had the rough films, like we had 12 Rough films made. And we actually started piloting them, showing them having kitchen table thoughts. The plays work on a different level, I still, the plays are first child, right? The films are really interesting, because they use and I don't want to reveal too much. But they use a combination of real lived experience and metaphor to accentuate certain things, that micro aggressions and I'll go back. Micro forms are small, everyday forms of discrimination are very hard to tell in film. So sometimes you have to use metaphor to make the micro macro.
And that's what the films allow. So that's one thing that I loved about the films, they actually took something that was in my head and going, how did people see that and show it in a way that people do get?
Yeah. So right now we're just working on the sound and we're going to be showcasing it in a couple of weeks.
Okay, so there's 12 of them. Is that right?
There's 12. Yeah. 12 short films.
And we're going to put them together in a screening This in total, when you put the 12 short films together plus intros, it works out to about 60 minutes, but the film's range from two minutes to about 6-7 minutes.
Okay. And obviously, it's going to be some sort of online, I guess, release?
Yes, it's going to be online, we had talked to a venue about maybe making it hybrid before Omnicron.
But now we're gonna make it totally online.
Okay. And I assume people can go to your website at some point to discover how they might be able to access this.
Yes, yes. When people hear this podcast, they should go to www.becauseshecares.com, check our event page and look at information on our event.
Okay, fantastic. Okay, so let me also think about this. So you have a book out, what's it called now?
Poetry Anthology out? Which is on how long ago did that come out?
That came out in 2018. We had a hardcopy that we gave to people now we also have it online.
Okay. So online, so people can also go to that website.
As of last week.
Okay, great. Yeah. So they can just download it from there.
They can't download it, but they can read it.
They can read it. Can they buy it?
Not yet. And I will I they probably will never be able to buy it. And the reason being is it was funded by research. I don't think charging people would be right.
Fair enough. Okay, no, that's good. That's good. Okay. So what do you see for Because She Cares in the next five years? Is there going to be a next five years?
I don't know, five years. And then if I say that, so we'll say to me why the performance go? Yes, it will be. I think we're at a point now where the one thing we have to revisit is, right now. We call it ACB. But the stories were originally from African immigrant women. So one thing we're looking at is can we gather more stories? So that's one thing we're thinking of, if we we had more time, can we gather more stories and and poetically re-tell them.
Right? And do it outside of research or within research?
Outside of research. Actually, I'm right now we're looking at funding through art space, funders. My supervisor, she suggested that I talked to a friend of hers who is a writer. I told her about the project, and she says it's art. And I would like it really should you know, it's art. It's it goes, you should talk to a friend of mine who happens to be a funder. And she said, apply to the Ontario Arts Council. So we have, we'll see what happens. But yeah, like, it's really funny. It's easier to write to an arts grant than it is a research.
Oh, yeah. Yeah. I can imagine that. You don't have to count your widgets so much.
No, no, you still do. But it's like you don't you only have a little mouse. So 16,000 done!
But talking to artists like we I've been talking to spoken word artists and key theatre artists, and they see themselves in it. Oh, I love to help you facilitate this process of gathering more stories. I showed a spoken word artist, she says, You know, I see this as being more interactive. You know, if you do get funding, I'd love to work with you in terms of getting the performance to act more and to perform more.
Oh, that's fantastic.
Yeah. So those are things that we're thinking of.
So do you think it's having an impact? And if you do, like, how do you know?
That's the thing? How do you know? I know, it does have an impact, in some sense with African Caribbean and black women, especially not just women living with HIV. But women who who are who are either don't know, their status, or who are not negative. One thing I'm hearing from them is that it actually allows them to kind of unpack some of the feelings they have working in the sector as well, and feeling silenced about it. But then they can feel more comfortable talking to their colleagues about it. So I've seen that I also noticed that it has brought up this conversation or added to the conversation of how do we bring back home ways of working to our work into the Canadian content?
Right. Okay. I mean, just to finish off, really, what are you most proud of? In this five years of Because She Cares.
That is not seen as a research project? Yeah, like it's I know, it's really weird. Here. I am a postdoctoral fellow PhD. And my practice thing I feel is when number one people see themselves in it, and and not that it's a research project, when people say, that's my story, and it's not their story. That makes me happy. Or when people are surprised when they find out it's from a research study. They go oh my god, it did feel real. Like they'll say that it did feel like real like someone's real experience, but it didn't feel like research. What do you mean by that? They said it didn't feel like a paper report. It's something I get. I find that nice and sad that people feel that research is something they don't get. What does that mean? I know James, we've talked about this, my whole goal is being a social workers to work myself out of the business. And I'm still trying. I've done in some senses and other senses, I haven't. And I'm finding more and more, that's what's happening. The collaborative, which is a group of women who support the project, or people who support the project, they're taking more of a leadership role, Laurie, you got to do this, we got to do that and hear more than we then me which is very hopeful. So my hope is in the next five years, it'll be truly out of my hands and into communities hands have worked myself out of Because She Cares. And not in a bad way, in a good way.
Well, that's fantastic.
So now, let's flashback to 2017 to Season One, Episode Four, where it all began.
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 our voice. And that, to me is poetic. So what I started noticing, when I started talking with a woman becuase I use a oral narrative, which is a common approach that we use for my culture. I'm Afro Jamaican. 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 are very political thing, 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 a 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 turn into stanzas. And then when I would read it out loud, listen to them and read it out loud, I found that there were natural breaks. So poetry was actually the women 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 were were really rich, because the way they talked about working 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 it in ways like activism, bringing care work back home, like the things they learn here, bringing it back home, the transnational 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 the 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 I get this,
Right. So talk to me about the your creativity that so working. But But working creative creatively in such a rational world, as 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, 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 my thesis which is what I need to do to graduate way 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 then community based research allows us to have I call the the real person voice. 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. Yeah,
so let's have a listen to one of the poems. Okay, 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 careful work for African immigrant women living with HIV.
Okay, who's participating in this call 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.
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 you don't know how to do our jobs. Sometimes you say, we need to empower a PHS 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 us, 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.
I love that last line, and a final piece of advice that we deserve.
So that was verbatim
So what themes emerged for you is the most common from the work?
Greater respect, and and I think that respect stem 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 out of the study totally was this notion of reciprocity. Give back and get back. Right, 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 used 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 vicariously in terms of on ODSP, 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 HIV. But there was also a 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 in their work, but because their, 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 there were an employee in an ASO no longer being a client, right, 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 quarrel?
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 and HIV conference recently, there was five of us and to introduce us were called the Because We Care collaborative, where people who work in the HIV responses 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 louder at particular spots. And 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 have been right. 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 hard. And then, and then some people reacted a day later, after the conference, and actually came up to me is like, first I was just shocked at how you guys did it. And then I was shocked at what you said and what resonated for me. So that's when I realized there's some power and 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. Right? Yeah.
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 narrators 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. Okay. 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 the 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 would create an opportunity, right, right. But more particularly, women actually said to me, I've 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, right. And it shook me. Well, how are we doing research that people don't get their stories back? Interesting. Yeah.
So what impact do you think that projects like these can have?
Well, I think one thing is using creative methods, such as poetry and performance, might allow us to 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 are culturally responsive, and trying to integrate them as much as possible with the people you were working with and for. Also, to, for me, personally, is kind of finding another voice that is not just the academic voices or research voice was actually very helpful for me, and 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.
Alright, so now let's fast forward to 2022 and hear Lori's responses to our rapid fire questions.
Okay, Laurie. So as you know, we always end Pozcast with the five this or that questions? So, here we go.
Yes. I'm very excited as well. Let's start with beer or wine?
Red or white? I may have to go six questions.
Oh, so difficult.
Okay. Moderna, or Pfizer?
The one that's available.
Doctor or PhD?
PhD when I have to use it not always.
Yeah. I'd be loving doctor. But anyway. Okay.
I like using doctor when I'm in places of privilege so that they realize that I have one at airport lines and that's a long story.
Okay. Singing or dancing?
Shower or tub?
Alright, well, thank you, Laurie so much. And we will see you hopefully in person sometime soon.
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 at Pozcast4U@gmail.com. That's the number 4 and the letter U. Pozcast is produced by the Positive Effect, which is brought to you by Reach Nexus at the Map Center for Urban Health Solutions. The Positive Effect is a facts based lived experience movement powered by people living with HIV and could be visited online at positiveeffect.org. Technical production is provided by David Grein of the Acme Podcasting Company in Toronto.