Research through poetry: Lori Chambers' spoken word film tells stories of living with HIV

A still image from the Because She Cares spoken word film series, courtesy of the Because She Cares Collaborative

On February 12, Lori Chambers (MSW 2008), founder, project director, producer and co-author of Because She Cares: Critical Poetic Re-tellings of HIV-related employment, will launch the “Because She Cares” spoken word film series — a project that shines a light on the stories of African immigrant women living with HIV who work for AIDS service and allied organizations in Ontario.

The 60-minute film screening — followed by a panel discussion with the performers, film makers and service providers who collaborated on the project — is part of Chambers’ postdoctoral research at the Factor-Inwentash Faculty of Social Work, which is examining the use of poetry, performance and film to translate and mobilize research.

> Register to attend the Because She Cares film launch on Feb 12

The Factor-Inwentash Faculty of Social Work spoke to Chambers about the differences between caring, uncaring, and “care-full” work; sharing knowledge through arts-based approaches, and the need for more storytelling in academia.

What inspired you to pursue a career in social work?

I got into social work later in life while working in the financial industry, which was the job I got when I first graduated. When I moved to Toronto, I volunteered at AIDS service organizations and found I enjoyed that more than my day job.

But the way I do social work was inspired by personal experiences. My dad was diagnosed with Alzheimer’s when I was in my twenties. I met social workers while caring for him, and it made me realize the importance of social work, the good and the bad of social workers, and how I could be part of the good. My dad experienced some aspects of racism in his care. I saw how some social workers perpetuated it and how others combated it.

What is the relationship between your research and your practice?

As a social worker, policy analyst, and researcher, I feel it is important to actively engage community — not only in generating knowledge but in applying it as well. Producing journal articles usually comes last. More important is producing community reports, engaging people in discussion, and finding ways to take what we have learned and apply it to practice.

Is sharing research in other, less traditional ways becoming more recognized in academia?

I’ve done blogs, podcasts, plays, spoken word, and used different kinds of arts-based and dialogical approaches to mobilizing knowledge, and have found that it isn’t as well received as a journal article. Even the chapter I co-published in the book Africentric Social Work wasn’t as well received as the previous articles I have published. And yet that book has inspired a lot of dialogue among African, Caribbean, and Black (ACB) people on how we do social work, and I think that’s more important.

I have a journal article in press, and once published, it will be cited and that’s good. I don’t want to say that I’m anti journal. But the purpose of mobilizing knowledge, especially community-based knowledge, is to ensure that it has utility for the communities it focuses on and that it brings about change. Journal articles sometimes don’t do that.

When you do a play, and you see people crying, you realize you hit something. Scholarship doesn’t only happen in academia, and when you think about it, theatre oratory, and storytelling are common practices of transmitting community knowledge. We just don’t call it knowledge dissemination.

How does anti-Black racism impact your work?

Anti-Black racism is embedded in how we do research, who we see as the audience of research knowledge, and how exclusionary some of our research practices can be. Even the most well-intentioned social work research can be institutionally and structurally racist if it doesn’t consider how communities gather knowledge.

Some of the ways that we portray community members and how we see them can be racist as well. An example of this is when we apply deficit ideologies on the people with which and for which we work; for instance, some researchers look at people living with or impacted by HIV as being wanting and in need, rather than looking at the structural practices that actually put them in the position of being “in need” in the first place. Benevolent colonization often happens when we look at social work as a form of saving communities, in particular communities that are racialized.

What inspired you to pursue research with African, Caribbean and Black women living with HIV who are working in Canadian AIDS service and allied organizations?

In my voluntary work, I started doing community-based research looking at housing as health for people living with HIV, and, together with Dr. Saara Greene, noticed a significant gap in incorporating women’s stories. I saw that women’s experiences of living with HIV while working in the sector often aren’t visible or seen in the same realm as men’s experiences.

Caring labour is very gendered. We applaud men who do certain front-line work in HIV, but with women it’s considered normal or “natural” to do this work. If a man does this kind of work, it’s like “oh my God, kudos to him!” — especially with a cis-gendered, straight man. It suggests that there are gendered realities to the work that we do in HIV that I think needs to be troubled.

What are some of the challenges that women working for these organizations face?

We try to set boundaries in social work, but it’s very difficult for women living with HIV, particularly ACB women, to navigate those boundaries when they are also expected to transverse them as people living with HIV. For instance, they are often expected to be both peers, people with lived experience of HIV, but also employees who act “professional” and adhere to operational protocols, including professional boundaries when dealing with clients. That’s very confusing to me and I think it’s confusing to a lot of the women I talk to. Especially with immigrant women, they often first join the organization as a way of connecting with others with shared experiences, and then they become an employee and the people who were their community are now clients. It can lead to a lot of isolation.

Another thing that also comes up a lot is credentials. Some of the women that I’ve interviewed have both experiential knowledge and working knowledge of HIV, non-profit organizations, and health work. Some have prior employment in health care or social service work in other countries. But when they come to Canada, often that prior knowledge is all erased, and all that is seen is the women living with HIV, not the other expertise she can bring to HIV service work. I’ll be on projects where I’m a project coordinator, and some of the community members on the team have more experienced than me.  Yet, I am their boss.

There’s a fourfold burden of racialized women, particularly African, Caribbean and Black women living with HIV that is shaped by gender, race, nationhood, and HIV status. These things combined create this intersection of oppression and privilege that shape how they navigate their work, but often all we see is HIV.

The Because She Cares project invited African, Caribbean and Black women living with HIV who work in HIV service to share stories of their experiences. These stories were then retold as poems and incorporated into a spoken word play. What inspired this particular approach?

Storytelling is pretty big in my family, but I never thought it could work in my thesis. In one of the first interviews I did, the woman I interviewed sang a song that was common in her country. This song expressed the covenant of care between people working in the HIV response and people living with HIV and how as a community, they were working in solidarity to address HIV. It was beautiful, and I thought: how can you put that in a quote? I also noticed how she performed it. She used her body language and she was very expressive, emphasizing certain words, and I thought: how can we capture that?

I started writing a poem, putting her words into stanza lines and verse, and I thought: oh, why don’t I do this? I had to revisit ethics and ask for permission which delayed things somewhat. Yet, when I went back to the woman, asking them to permit me to re-tell their stories as poems, they were really excited.

When I shared with them the poems I included in my dissertation, they asked, “what are you going do with this? You can’t just keep it in a dissertation!” One woman suggested it be performed as spoken word. That’s how the play came about. Our intention when I submitted the proposal for my postdoc was to rework the play into an educational tool. But when COVID hit, things changed.

We thought, why not use film, which would reduce some of our issue with physical contact. Film is a different medium, though, because a filmmaker sees things in particular ways that kind of forces people to adopt the image on the screen when making sense of the topic. But the beauty about it, too, was that it allowed us to hone in on certain themes that were really relevant.

We looked at intersecting systems of oppression more with film, and we were able to use imagery that was a little more provocative. I wanted to use my postdoc as an opportunity to understand why this form of knowledge generation is so critical. And why do I call it culturally responsive? I also wanted to understand how using film and discussions afterwards could engender certain ways of understanding the experience and mobilizing knowledge.

You have described the women’s work as caring work, uncaring work and care-full work. Could you elaborate?

When I talk about caring work, I’m talking about the work that ACB women living with HIV do in support of individuals and communities living with HIV.

Uncaring work is the practices and processes in AIDS service and other human service workplaces that actually impeded the women’s health and well-being. For instance, intersecting systems of oppression, navigating disclosure, anticipated HIV stigma, and the boundaries they have to hold that can also impede their connections with other women or clients who used to be their primary social support. It can also include the emotional labour that’s heightened when you’re living with HIV and working in the sector.

“Care-full” work is something I theorized in my thesis, and it’s basically looking at the practices that African, Caribbean and Black women engage in at personal, interpersonal, organizational and structural levels to ensure their own health and well-being while they engage in this work.

How do you hope your research will help inform and strengthen social work practice?

I hope it will build a better understanding of caring work from the perspective of people who are engaged in such work because of their lived experience, in this case ACB women living with HIV who work in HIV service work. Yet, I believe this understanding can also be compared with other forms of human service work, where one’s lived experience, with a chronic illness or minoritized identity, draws them to engage in human service work.  I also hope it will highlight how people who identify as Black or of African descent may experience microaggressions in human service work, including organizations with social justice aims. Some of the experiences of ACB women living with HIV parallel those of other ACB women in social work, social service work, and broader health service work.

I also hope that this research can help bring more of what I call “home knowing” to our knowledge generation and mobilization practices. I call it knowledge generation and mobilization, instead of research and research dissemination, purposefully to avoid narrowing it to the confines of the academic, so other people can see themselves participating in it.

I’m interested in how we can incorporate home knowing into social work in a way that’s not tokenistic — for instance, people who may recite a spoken word poem by Audrey Lorde or another Black artist as part of their dissemination with the Black community without any context. Instead, how can we integrate the “back home” stories and storytelling practices of the communities for which we work. How can we make it integrated, rather than ad hoc? And also, how can the arts be applied in social work practice in culturally responsive ways?

How do you hope this approach will impact policy?

Some of my policy colleagues are really interested in the project because it’s offering an approach that you don’t usually see in public service work. They’re now thinking about how government can take more creative approaches to sharing knowledge and how it can support organizations that use creative approaches as well.

This work could also impact organizational policies in AIDS service organizations, for instance, policies that help integrate greater and more meaningful engagement of people living with HIV as well as training practices in organizations, including anti-Black racism education. Arts-based approaches can be used to discuss really challenging issues, such as HIV stigma and credentialism in the workplace, in a way that touches upon emotions and, as a result, inspires critical reflection and raises consciousness.

What advice do you have for Black social workers entering the field?

One of the reasons I used a creative practice in my work is because I couldn’t find someone who did it before me. A lot of Black students I talked to said, “I never knew I could use spoken word in my thesis.” I thought, if I can do it and have it in a scholarly document, that will make it easier for other Black students to do it and feel that their way of knowing is just as relevant as the knowledge generation and mobilization found in Eurowestern scholarly journals.

So, my advice is: don’t discount your ways of knowing that your family reared in you. You can bring it in, just be creative about it and look at the theory behind it. Why do you speak the way you speak? Why do you story-tell the way you story-tell? There’s a theory. It just might not be published in a journal. Your grandmother might know it though.

Originally published by Factor-Inwentash Faculty of Social Work