As the Positive Living Positive Homes team dives into data from initial interviews with HIV-positive participants, we’re running up against some tricky issues. In this blog post, Prince George Site Coordinator Devyn Flesher reflects on the difficulties of asking about the discrimination potentially faced by HIV+ folks seeking and maintaining housing in Prince George.
In Prince George and Vancouver, we have completed the first round of interviews for the PLPH study, and data
analysis has started. Some clear themes and patterns have already begun to appear, with some topics creating new questions that we wanted to dig into more deeply.
One pattern that came up in the analysis of transcripts from initial interviews was a disconnect between what participants were answering about discrimination within a housing context and what they were actually saying about discrimination. A prime example is when a participant would describe what, to me, was clearly a situation in which they were being discriminated against, but later in the interview, when directly asked if they had ever experienced discrimination, they would say “no.” We wanted to get at that disconnect a little better and figure out a way of getting a more complete story from people.
When we brought this up at a meeting earlier in the year, one of our Prince George advisory group members said that often, when a person has experienced systemic racism all their life, they stop noticing it because it has become the “normal” way that society interacts with them. I wanted to address this and find a way to not only get at the deeper truth, but also, hopefully build some awareness and capacity around that. But how to do this in a sensitive way?
We held a roundtable discussion at Positive Living North with a couple of the staff members and the three site coordinators for PLPH. I didn’t come into the roundtable with any formal expectations beyond wanting to know, “How do we get at this question better?” As a white person, I am conscious of my position in an interview. I can’t tell people that they are being discriminated against because I don’t know the full story. I’m also aware that what I think is the reason they are being discriminated against may not be correct. As an interviewer, when I sit across from someone who is Indigenous, HIV-positive, has been street entrenched and has struggled with addictions, I need to hold back my assumptions because any of those things could be a reason why a landlord turned that person down. But it could also be none of those things. So when someone says to me that they were discriminated against “because of the way they look,” I have to put aside my own theories and allow the participant to come to an honest, thoughtful answer of why that happened, if they can.
In our roundtable discussion we talked about how to get to such an answer without leading a participant or making assumptions, without causing unnecessary trauma, and without making them feel stupid for not seeing or naming discrimination. The conclusion we came to was to reframe the way we approach the discussion, and this can happen in a few different ways.
Reframing the Discussion
During the initial interviews we discovered that sometimes the very deliberately inclusive and non-judgemental language we use in research, can itself be exclusionary and make assumptions. For example, when we ask about gender and sexual orientation, we ask “In terms of gender, how do you identify?” This phrasing is meant to be inclusive and inoffensive, but it’s very academic and assumes colloquialism. People who are used to simply being asked “Are you male or female?” had no idea what I was talking about. So, within the interview questions there were a few places where we have had to rephrase or clarify the language that we use. With the word “discrimination” we discovered we need to clarify what that means, and maybe reframe it using other words, such as “prejudice.”
Using multiple perspectives
This is really what CBR is all about: we take the opportunity to delve into our research topic with input and guidance from a variety of folks. So, in addition to tweaking the questions on the follow-up interviews to allow for a more open discussion about discrimination, we can let participants see these patterns for themselves during the participatory analysis stage of the study. By inviting study participants to be involved in interpreting some of the data, we have another opportunity to have a discussion on discrimination, this time with the input of the people whose lived experience it is. In the end, our understanding will be richer for it.
Further issues and recommendations that came out of the roundtable discussion:
1) We need to interview landlords in this study (a population we hadn’t previously thought to include). It does no good to have a study about access to housing where the people providing the housing are not involved.
2) Understanding that, just as someone might be so used to discrimination that they don’t see it, sometimes a person is so used to being discriminated against that they assume everything that happens to them is racially motivated. Dealing with this can be tricky in a research setting.
3) PLN identified a need for member education: just as they offer training or guidance on how to present one’s best self at a job interview, there is a similar need for education around getting an apartment.
4) Capacity building and empowerment are key. If people know their rights and that they won’t get in trouble for standing up for themselves, they are in a better position to not be victimized. Some people don’t want to do anything that might put their housing at risk. So if they have been discriminated against or treated unfairly, they won’t speak up for fear of retaliation. This indicates a need for stronger tenants’ rights advocacy and easier access to systems for seeking justice in landlord/tenant disputes and human rights violations.
5) The participatory analysis component of community-based research can do more than simply interpret the data. It has the potential to be a capacity building and empowerment tool for the marginalized persons who are usually studied, but are rarely involved in what happens after they share their stories.