James Watson: Today, you will
hear the views and ideas of our
pozcast guests. We 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 the
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.
Zack Marshall: Oh my gosh,
humility. Definitely humility. I
think that's probably the number
one thing and just to look at
our assumptions, especially when
we think we're doing the quote
unquote "good job."
James Watson: Today on pozcast
is part two of a series
exploring the role of Peer
Research Associates, or PRAs, as
are commonly referred to. If you
haven't had the chance to listen
to part one, I highly recommend
a listen. I had a great
conversation with two highly
respected peer researchers, Tim
and Lynne. It's a good one. In
my ongoing journey to get input
on peer research, from a variety
of points of view, I reached out
to two people whose work and way
of working, I really admire.
They have an intimate knowledge
of working with peer researchers
and care deeply about the people
they employ, and the employment
experiences they have. Lori
Chambers and Zack Marshall are
both accomplished social
workers, social justice
advocates, and community-engaged
researchers. Welcome to pozcast,
both of you.
Lori Chambers: Thank you, James.
Zack Marshall: Thanks, James. So
happy to be here.
James Watson: So I'm thrilled to
have you here. Let's just dive
right in. So in my conversation
with Tim and Lynne, two very
well respected peer researchers,
I opened with a question around
motivation, like why do they do
the work that they do? So I want
to put that same sort of
question out to both of you,
Lori, what draws you to the
community-engaged research work
that you do?
Lori Chambers: I got into this
work almost by accident. I got
into this work as a volunteer at
an AIDS service organization,
and the executive director at
the time, Ruthann Tucker,
invited me to be part of a
project, which was actually the
precursor of Positive Spaces,
Healthy Places. And she
introduced me to a way of doing
research that was so—it was very
much grounded in community
wisdom, and that's the way she
phrased it. And that the work
that we do, and that's probably
why I also went to social work,
the work that we do as social
workers should be grounded in
community wisdom, there's a
history of it not be. But so I
approach research, like I
approached social work, as a
form of community practice, and
more so it's a form of working
my way out of the business,
which I've always pursued with
both social work and
community-based research.
James Watson: What do you mean,
by working your way out of the
business?
Lori Chambers: Well, I kind of
think about some of the
conversations I've been having.
And to me, community-based
research is shifting from being,
you know, an academic who maybe
leads or co leads research to be
more of an advisory role, or a
role where you work—not even in
tandem, you work to elevate the
wisdom of the people who you
work with. So ideally, I would
hope that I moved back, meaning,
you know, I support other people
in doing the community-based
work that they want to do, and
they asked me questions and
advice as need be. But it's not
about me, you know, the getting
papers done or whatever it's
about we, which is the
community—people I work with,
the organizations I work with,
and the facilitating of that
process.
James Watson: Right, and Zack,
so what draws you to the
community-engaged research work
that you do?
Zack Marshall: Well, I tried to
go back because I sort of
thought you might ask us
something like this. I tried to
go back and try to figure out
when did this start? Kind of
like Lori, my first response is
I don't really—I guess I would
say, I don't know how to do it
differently. But that's not
exactly true. I've been taught
many ways of doing research, I
would say, partly not interested
in doing it differently. But I
also don't feel I feel like I'm
refusing now to do research
differently. I only want to do
research that is in solidarity
and in partnership with
communities. And often that's
communities that I'm a part of
one way or another. And even
around HIV, I was trying to
think like, when did I start
getting involved in
community-based HIV research?
And it's a little bit hard to
disentangle because so much of
our early work it was, I didn't
even call it peers—it was all
like by and for the community.
So it's hard then to disentangle
research from that. But it's
just I feel it's so much a part
of our roots, even when I first
started getting involved in the
early 90s.
James Watson: Right. Do you
think like the work you're doing
now, or the work that you do
with people living with HIV, do
you think you're making a
difference? Lori?
Lori Chambers: Oh, that's an
interesting question. Yes, in
some ways, and no, in others.
Where I say yes, is I've
noticed, the projects that I'm
on, are not necessarily academic
ones. They are projects where
communities leading, they asked
me to advise in some way, and
how I participate is often
varied. But it's not expecting
me necessarily to be the leader,
even though I do do projects
where I might be in
collaboration and leadership. So
yes, in that way, no in others,
because what I'm noticing is,
people feel this need—I am
noticing this academicization of
community-based research work,
and it's partly our fault. I
noticed a lot of people feeling
this need to get a degree. And I
ask them why they go, because
I'm often silenced or not
listened to, until I get, you
know, a Master's or PhD. And
then they say, Look at you,
Lori, you did it. Like, oh, but
at the same time, I totally see
this credentialzation happening
for good. I think more people
that, you know, more community
members should go to school if
they want to go to school, but
also the challenge. What about
people who cannot? Should not or
do not want to? Will this shut
them out of doing
community-based research in ways
in which they can also be
leaders in it?
James Watson: Oh, that's
interesting. What do you think
about the credentialization in
community-based research, Zack?
Zack Marshall: I think there's
so many differences depending on
sector. So I was thinking about,
like research in partnership
with people who use drugs, I
feel like the experience—the
lived experience—is the most
important piece. But there's
been such strong advocacy,
similar to GIPA/MIPA around
ensuring that people with lived
experience are at the center.
And in in leadership roles, I
feel like there's a high degree
of sort of a demand for
accountability around that. So I
know there, there are definitely
also movements around
certificate programs even say,
so even if someone isn't
necessarily deciding to go to
university or college, there are
definitely certificate programs
also around peer support. So
yeah, I guess like I struggle
with it a little bit, kind of
what you're saying as well,
Lori, I do struggle with this a
little bit, because what are we
saying that, oh, there there
needs to be this group of people
who don't have, you know what I
mean, this university education
that are, "peers," it gets into
the whole thing about what is a
peer. And I know we've also
heard from people with lived
experience, including people
living with HIV, who find that
as they get more and more
experience, they may be moving
further away from their original
circumstances and also from the
concept of the who researchers
are trying to reach. So it can
be distancing. I think,
sometimes the whole
professionalization or increased
training or just increased
experience period, can be
distancing.
James Watson: Right. Well talk
to me a bit about your
perspectives on the peer
researcher role itself, like
what is their main function? And
what is the what is the value
that they add to the project?
Lori?
Lori Chambers: It's an
interesting question because
yeah, it goes back to what Zack
says, what is a peer?
Increasingly, the work that I am
doing is work with, for and by
people who identify as ACB
living with or impacted by HIV.
And as such, in some senses, I
am a peer and in other senses, I
am not. As a person who
identifies as Black or of
African descent, and also a
person though who also
identifies as HIV negative.
However, what I sense peer is,
what peer researcher is, is a
person who has multiple ways of
knowing, one of which is
experiential or work-oriented.
And that experiential knowledge
is something that cannot be read
in a book, or it cannot be
obtained in a way that academic
knowledge can be. But I also see
peer research a way of be with
research. And what I mean by
that is you're engaging in
research that has a tangible
impact on the communities in
which you identify with. And
that's where this notion of peer
shifts for me, because a lot of
projects that I do impact Black
communities, both living with
and impacted are racialized
women. So I'm really mindful
that that lens of peer sometimes
shapes the projects that I
choose the methods that I use,
and even the people I work with.
So I feel I know that's a
circular answer, you know, me, I
talk in circles. I think it's a
circular answer and saying, it's
really dependent on context and
how you define experiencial
knowledge.
James Watson: Okay, so what is
the value that peer researchers
add to a project, then?
Lori Chambers: I think both the
exponential insights and the
passion to apply those the
learning from research with and
for their communities. And also
to to a representative aspect,
where people feel that they can
look at research and say, Hey,
this is research done by people
who, not only have lived
experience, but who want to give
back the wisdom back to my
community. I think that's really
important for people to be able
to see that the members of the
team are representative of the
communities with which the
research is intended.
James Watson: Right? Would you
agree with that, Zack?
Zack Marshall: I think, for me,
in a way, it depends on the
project. So let's just say
there's a community that's
worked together for a long time,
and they've identified Oh, we
want to do some research about
blank, we'll just see, we've
been talking about food
security, right? Food security.
And so then that group, like,
even if a geographically
specific group, or experiential
specific group would maybe
partner with the researcher, so
in that case, it's almost like
what does the researcher bring,
this university researcher or
this academic researcher bring,
as opposed to what does the peer
bring? I mean, to me the quote
unquote, peer, and I say that
because I know a lot of people
do not like the word peer at
all. And we've been trying to
instead use words like community
researcher, community scholar,
but in any case, I don't want to
digress too far into that, but
it's also hard to keep saying
peer, when I've heard so many
times that people don't like it,
you know. So in the context of a
project where you have community
members who are—or a community
that is partnering with the
researcher, it's more about what
do you want that academic
researcher to bring? And even
individual peers, I think might
bring specific skill sets, you
know, what I mean, might say,
Oh, I want to do this, or I want
to get involved in data
collection, data analysis, all
the different types of roles in
envisioning the project,
designing the data collection
tools, there's so many pieces,
but to me, it's more about the
accountability, and the
continuous sort of checkpoints
that you can have where you can
go back and say, Okay, so we did
this. We talked about doing
this. Now we did this part of
it. And what should we do now?
Like, it's more of a
partnership. It's not just like,
Oh, we hired these community
members, and they have a job.
You know what I mean? It's not
that, in my mind anyway.
James Watson: Right? Fair
enough. So, before you begin a
project with peer researchers,
like what are some of the key
elements you need to consider?
How about you, Lori?
Lori Chambers: I was hoping
you'd ask Zack first because I
struggled with that, then maybe
Zack can answer it better, is it
assumes that it's a job, or it's
a kind of, you know, here are
the qualifications that you need
to check box you need to be a
good peer researcher. But I
usually don't approach it that
way. It's basically there'll be
a group of us having this
conversation. Or having this,
we're talking about this idea.
And we're thinking, Oh, we
should do that as a research
project. Now, one of those
persons could be living with
HIV. Another those persons could
be identify as, as a racialized
woman, or another community
impacted by HIV. And another one
of those people could be an
academic, and sometimes it's not
easy to separate them. Sometimes
the academic is also a person
living with HIV, sometimes the
racialized person is the
academic so and so forth. So
it's not this checkbox thing,
it's we all are having this
conversation, having this
intellectual puzzle, as I
sometimes say that we all share,
and we kind of want to untrouble
it. So we work together
collaboratively. I haven't
approached that research in that
way since I've left OHTN,
because...
James Watson: The OHTN?
Lori Chambers: Oh, sorry, the
Ontario HIV Treatment Network.
When I was in a role where I was
an employee, yes, I approached
it that way when I was an
employee of a community-based
organization, but since then
it's more of this collaboration
amongst people who have a
shared, a common vision of how
to gather and share knowledge.
And our identities are part of
that troubling and desire to
see, to gather and share
knowledge.
James Watson: So are there then
constraints, I mean, you're
constrained by an organization
or university, let's say, over
how you work?
Lori Chambers: Those constraints
happen when we institutionalize
research. So for instance, we
might be having this
conversation Oh, yeah, we should
do your research study. Oh, then
the academic says Oh, well, we
have to write a paper because
I'm on the tenure track, and I
need those papers written. And
then the person who works in
community organization Oh, well,
I need to make sure that it fits
within my job criteria, so that
I can work. So you know, or we
do it after work if I'm not
being part of that, which is
additional job for me—multiple
hats, as it will. And then the
person with lived experience,
and this can all be shared to
say, Well, you know what, I want
to make sure that the GIPA/MEPA
practices are installed. Yes,
thanks for having this
conversation, but we have to
ensure this goes back to the
community. And then we notice
the tensions. Where, well, does
you publishing this paper a bit
GIPA/MEPA, does the community
organization mind if the
academic organization holds the
funds? So what happens is, once
those nice, great conversations
with generative conversations
happen, and you know, we put
the—we have to actually do the
research, once the
institutionalization aspect
happens, or the requirements
that need to be fulfilled for
this to be an academic research
project or a community
organization led project, that's
where the tensions lie.
James Watson: Right. So Zack,
for you, I mean, is that a
reality? I mean, you're based in
a university, is that a reality
for you that some of these
constraints come into play when
producing your research?
Zack Marshall: They definitely
do around hiring. Sometimes, for
example, I'm in a situation
where recently, they changed the
guidelines of who counts as a
research assistant at my
university, and so the only
people that can be hired
currently, as research
assistants are full time
students, I think it is. Either
it and sometimes it's Masters or
PhD students, specifically. So
then we have some funding, and
within our funding call, like
within our proposal, we are
hiring community members and
peers, specifically. And now
peers could be people who are
grad students, but we want to
have more room, we want to be
able to be more inclusive. I've
had to go back now a couple of
times to HR to ask what we can
do about this. But this, I
think, from institutional
perspective was seemed like a
quote unquote, easy decision,
and was meant to encourage
faculty members to hire students
from, specifically from my
institution, right? And so it's
just it's led to a lot of
questions that I've had to go
back a few times, I've had to go
talk to other faculty that do
community-based research to ask
them, How are they handling
this? And it wasn't really
publicly announced, either. So I
just sort of found out by
happenstance, when I went to
say, I want to post this job,
and I want it to be a community
member that's hired not a
student. Definitely there are
constraints. And then this
requires us to be creative. I
know sometimes people will be
able to, you know, work with the
community based-organization and
close some of the funds there,
so we can pay community members
through community-based
organizations. So sometimes we
do we have to be creative or is
it then someone is getting an
honouraria instead of being an
employee, but then what are the
ramifications of that and that
comes around to some my own
deep, deep interest in the
labour practices that we have in
the field of community-based
research. And and some of those
things, we maybe were thinking,
Oh, well the good thing is the
person will still get the money,
you know what I mean? Because
but they'll get it in the form
of a stipend or honourarium, but
that's not the same thing,
right? As being an employee and,
and the potential benefits that
come with that there's, there's
a lot to sort of sort through
there.
James Watson: And we're gonna
get into that, sorry, go ahead,
Lori.
Lori Chambers: I was just gonna
add to Zack's point, because the
flip side of that is the
multiple hats tension, where you
have people who are employed in
a service or community health
organization, who want to engage
in research, and they have a
salary. So that facilitates that
one end of the challenge of the
precarious labour of peer work.
But the challenge of that is
they have multiple hats. I
remember one time I'm on a
project, and everybody wanted to
participate, but they're going,
Lori, I'm on so many projects,
I'm tired. And I said, Okay, how
can I make this easier for you?
So we did CABs [Community
Advisory Board] less often, but
then it made me feel that people
are not as engaged in the
project. So it's, it's less
participatory in some sense, but
we had to do so for their own
labour—to make sure that they
didn't feel overwhelmed by their
participation. But at the same
time, it could be argued that it
has less community engagement
because of that. So there's also
the tension of overworking
people who want to participate
in projects, particularly if
they're part of a community that
is underrepresented in research.
James Watson: Right, right. So
what's the one piece of advice
you'd give to a new researcher,
who is looking to work with peer
researchers, Zack?
Zack Marshall: Get good advice.
Talk to people in advance, you
know, as you're planning,
especially if you're applying
for funding, before you submit
your budget, because you really
need a budget that's going to
have enough room to really
engage with community members.
So not just like, blank dollars
per hour for say a peer
researcher, but you need, like
Lori was just talking about, you
need a community advisory board,
then you need stipends for
people, then you need food, you
need money for a condensed
training period of time to
really help people, whether it's
about training, or people are
already experienced, it might be
more about team building, if you
get the funding, then you need
the time to work on data
collection tools. So you need to
really build in the funds if
you're working with Indigenous
communities, you may need funds
for knowledge keepers or to work
withIndigenous Elders from
specific communities. So there's
a lot there that needs to be
thought about in terms of space,
technology, and resources that
needs to be in the budget.
Because otherwise, if you apply
and you've just got seven hours
a week for a peer researcher,
you know, for six months, like
from my perspective, this is not
going to do it. So I think
talking with other people who've
done it before makes such a
difference. Because you could
say Oh, would you mind sharing
your budget? Or can you tell me
how you went about developing
your budget? And and talk to
obviously, like peers
themselves, do some really good
consultation before you jump
into it.
James Watson: Right. I've been
thinking like how, like, how do
you learn as a student? Like,
how do you learning about eer
research? Is that something that
you just have to dive in and do
and poke around? Or is it
something that they teach?
Lori Chambers: I think, I know
there's some really good people
who are engaging students, in
social work anyway, who are
engaging students at early
stages. For instance, when I was
a Masters student, David Brennan
engaged me on his project in
terms of recruiting during
Pride. And one of the reasons he
did so is he felt that my
experience and expertise would
help but also I learned how to
recruit in a particular way for
a survey, which I never knew
before. So it's a little bit of
a mix of the student gaining
some skills in terms of, you
know, some social work schools,
I've taught it, I've taught CPR,
but CBR is very much you got to
get into it. You've got to learn
through doing the work in and
also making mistakes. I've made
mistakes where I've been, you
know, years later people say,
you know, that research project
you were on when you were at
BSW, Lori, where's the paper? Or
where's the community report?
I'm like uhhh...So I think that
it's really important for
students to get some, you know,
learning. It could be a course,
it could be a workshop, but the
real learning is the doing. And
finding good mentor—I've been
lucky in that. And I think
students, if they really want to
engage in this, find someone who
really inspires you and learn
from them. Often good
community-based researchers are
good mentors, because basically
they want to share knowledge and
share what they do, and ensure
that community-based research is
sustained.
James Watson: Okay, so, Zack,
what have you learned about
yourself working with peer
researchers?
Zack Marshall: Oh, my gosh,
humility. Definitely humility.
Yeah, I think that's probably
the number one thing, and just
to look at our assumptions,
especially when we think we're
doing a quote, unquote, good
job. Because I so remember the
time when I was so happy that we
were able to hire someone
full-time for a research
coordinator position, and I
found out later that the person
still didn't have health
benefits, and had lost access to
their prescriptions being
covered from before. And so then
they're paying a huge amount for
their prescriptions. You know,
they didn't tell us and I didn't
know. And so it's just this went
on for quite some time until I
overheard something in a
conversation, I was sort of
like, What do you mean, like
you're having to pay $400 a
month for prescriptions? You
know, so I thought, Oh, my gosh,
here, oh, good for you, Zack,
you know, like, here, you
thought like, congratulations,
you thought you're doing this
great thing, and actually, it
ended up being a burden for the
person. And then so then, so
then we had to do some
additional advocacy. In that
case, it was through a health
institution, just to address
this. You know what I mean,
because you can just be too far
removed, you know, I mean, from
the person's experience, and
they might not want to get into
it with you, they might not want
to tell you, and they have a
right to—people have a right to
privacy. But on the other hand,
if you don't ask you won't know.
So I think instead, we should
start to have like, questions,
you know, that we are having as
part of like when we're hiring
people, like what are the
benefits, but what are
potentially the costs of taking
different approaches. And that's
why I think the way we hire
people, the way we engage with
people, it needs to be flexible,
and needs to best relate to
their experience and what their
goals are, you know what I mean?
Because some people don't want
full-time employment. They're
looking for something different.
And so I think we need to be
able to have the mindset to be
able to have these
conversations, and to be very
clear with people when we are
asking them why we're asking
them this. So you can never
really get too comfortable with
CBR.
James Watson: Asking the same
question, Lori. So what have you
learned about yourself working
with peer researchers?
Lori Chambers: Humility is a
huge thing. And also, I guess
the first thing that came to
mind is, and I'll explain it
checking, your privilege, I
think as it came up in Zack's
answer. And in mine, I remember
the first, it was a housing
study, people who experienced
housing precarity,
precariousness, and I'm assuming
they're easy to reach. That was
naive of me. And assuming that
the person I talked to last week
would have the same number, as
they had before, no. And papers
as another way, like where, you
know, people might be really
happy to be on a paper, but when
they see all the affiliations
that some people have, and then
they have an affiliation as
community member, that can also
be one that demeans their role.
And what I mean by that is it
creates this hierarchy of
knowledge that can be
problematic in publications, but
more so that they're seen as
different. So sometimes I say,
why can't we—none of us put our
affiliation? Why can we just put
our names, and then that causes
tensions, as well. So I think
it's really important to have
those conversations out in the
open before, and actually talk
about you know, it when we're
in, we're doing a research
project that is affiliated with
an academic setting, these are
some of the tensions. CBR should
not be doing harm, but it often
can do harm if we don't think
about its practices and the
institutions that construct
those practices.
James Watson: So let's listen to
what Deborah has to say here. I
just want to get your take on a
couple of the issues she raises.
Deborah Norris: Hi, my name is
Deborah, and I'm here in
Edmonton, Alberta. I've been a
peer researcher for the Alberta
Stigma Index for two years. I
was diagnosed with HIV 30 years
ago and have been a participant
in many research projects over
the years. I got involved in
doing peer research because I
believe really strongly, that
the greater involvement and
meaningful engagement of people
living with HIV, particularly in
research, is extremely
important. So when I was given
the opportunity to be involved
with the stigma Index, I leapt
at the chance. I'm hoping that
over time, I'll be able to be
more involved in the
coordination of research, the
analysis of the data, and
disseminating research so that
communities can act on the
knowledge that has been gained.
I feel strongly that it's
important that research has an
end goal of changing society,
and improving the lives of
people living with HIV. Thank
you.
James Watson: So Deborah
mentions, well many things, but
but her strong belief in the
GIPA/MIPA principle drew her to
the role that she's hoping to
advance and do more. Right, that
her role will grow. I mean,
she's certainly not alone. I
hear this all the time. We all
do. So how could research teams
better support this kind of
engagement and growth? What do
you think, Zack?
Zack Marshall: Well, I think the
way I've seen it happen best I'd
say is, as people are gaining
experience, I think there needs
to be a model, where, and this
is echoed in harm reduction
work, actually, where people can
initially start, if they have no
experience, you know, they can
start with some elements of the
work and then start to get more
involved in and gain experience.
I think community-based research
is really an apprenticeship-type
of model for everyone involved,
whether it's community members
or academics. And so this
apprenticeship way then means
that we're learning how to do
it, but we're also learning from
each other. That way, we also
are learning to hold each other
accountable. Because that's
another piece of it. It's not
just learning, say how to
recruit people, or how to
administer a survey, but it's
also how to hold each other
accountable and to be
responsible together. So there's
a number of skill sets. So I do
see it as possible. And I've
seen it happen that people can
advance I think, for me, one of
the constraints is actually the
budgets. Every time we're doing
this, we're going to provincial
funders, you know, grant
funding, federal funding,
they're super competitive,
they're all time-limited. So
these are not permanent
positions. And so it just, it
definitely contributes to the
precarity. But also instability
of it. It's just it's so
unexpected. We don't know
ourselves whether or not we'll
be able to get funding, and then
how much we'll be able to pay
someone and all of that. So that
just makes it a little bit
harder. It's more a function of
where the money comes from to do
this type of work.
James Watson: I mean, it seems
to me like you're talking about
advancement in the role, right?
I mean, there seems to be such a
disconnect between the principle
of GIPA/MIPA, like in theory,
and its implementation. So I'm
wondering if you could speak to
that a little bit, Lori?
Lori Chambers: I agree. The
whole point of GIPA/MEPA, is
nothing for us, without us and
including research. And you
know, when you look at the
foundations of it, it's in all
aspects of the response,
including all aspects of
research, and it kind of
resonated with how Deborah said
she's doing one part, but she's
not doing the part with analysis
and dissemination. So I do agree
with Zack that apprenticeship is
really important. Where I think
also we have to look at is the
structures that we've created,
or the structures in which—it's
almost like the structure is
here, and this structure is very
neoliberal. Very unconstrained,
and then we've dropped CBR into
it. And so we don't have the
funding, because the structure
didn't anticipate that a person
would want to do this full-time,
at a sustainable wage, for
years. And we have this
constraint. So I think if we
don't change the structure, if
we don't change the structure of
research, and of knowledge
gathering, which CBR has been
plugged into, I think we're
always going to have these
tensions. And also with models,
I know that you guys at Positive
Effect have looked at different
dissemination models that ground
the knowing practices from the
community members, and I'm
looking at that, too, like home
knowledges. How can home
knowledges from communities of
African descent be integrated in
knowledge gathering and sharing?
Because once again, if we don't
change the structures of
research and how we conduct
research, we need PhDs and
certain ways, and I don't think
that's right. I don't think
that's right.
James Watson: So is it time
then, for a PRA co-op, union
national association? Is it
time—I mean, is the model
broken? Is it time to rebuild?
And I'll put that question to
you, Zack.
Zack Marshall: Well, I'm
definitely super excited in
alternative labour practices, so
called alternatives. So whether
that's unions, clubs, social
enterprises, ways for people who
are working as peers, to be able
to leverage their experience
together in ways that would be
less isolating, because we know
it's very like each individual
kind of like each one for
themself. We've had a lot of
feedback over the years from
people saying that they feel
isolated, or they feel that the
players are not accountable, or
they just, they heard about
someone on their team got fired,
and there's with no notice, you
know, and they don't know why or
they didn't agree, and it has
had a huge impact on that
person. So and we also have
heard a lot about people feeling
like the work they do is very
emotionally engaging, but also
taxing, and that there's not
enough supports in place. We've
had a lot of feedback about
what's wrong with the current
model, I definitely think that
some collective responses would
be great. And I don't think it
necessarily has to be all peers,
you know what I mean, all peers
that start, say, a worker co-op,
it could be done more as like a
solidarity tool that is actually
bringing together like
minded-people. Because one of
the things I've been hearing
about co-ops is that they're
actually really difficult to
administer, and it takes a lot
of energy in and of itself. No,
I'm not saying that peers
couldn't do that. I'm not saying
that at all. But I'm just
saying, what roles do people
want to have? And how can we
best like match those to what
people are able to do so that we
have some people that like to do
things that like, write bylaws,
and deal with payroll, and you
know what I mean, deal with all
of the government registration
of a cooperative, which they're
all provincial, there's all
these legal aspects to it, blah,
blah, blah. So let's make sure
that the people that are doing
that are the people that want to
be doing that, and that people
are taking on roles that
hopefully they feel excited
about. The other thing for me,
though, is it still doesn't get
around the problem of where do
we get the money? You know,
because part of me is like, Oh,
can we just like go around the
academic researchers and have a
be community driven research
period? But then I still have
the question of Well, then,
where does the money come from?
Because a lot of the initiatives
that go to community
organizations, they don't want
to fund research. So it's like,
they want to know, maybe fund
evaluation, which could be a
form of research, but they don't
want to fund research. And
they're really adamant about
that, right? At the municipal
level, or you know, at the
provincial level. So I totally
heard what you were saying,
Lori, I guess it's also saying,
Okay, if we're going to do it
that way, we probably also need
to advocate about where the
funding is going to come from.
Lori Chambers: Yeah, yeah, I
think that's my biggest tension.
I do agree that there's been a
lot of great work in terms of
addressing how GIPA/MIPA is not
fully integrated and
community-based research. And
we've, we've seen a lot of
people who've done great work,
Adrian Gupta is one, Zack,
you're another, Sarah Flicker,
there's like a whole name of
people that we could credit, but
the biggest challenge is, Okay,
we've identified it, how do we
implement it? And Zack has
pointed out the money aspect is
a big thing. And also, too,
which forms of skills are
valued, still holds on to a
traditional model. And when I
say traditional, is the model of
research that's
academic-started, and then
imposed upon communities, rather
than the communities imposing
their ways of knowing and their
knowing practices. And if CBR's
rooots need to be—we need to
uplift the plant of CBR and put
it in a different foundation.
James Watson: When I was
speaking to Tim and Lynne about
this very topic, Tim spoke about
wanting to connect with other
peers across the country, as you
were mentioning Zack, you know,
via an association or union or
something like that, and
determining sort of a common
dollar value for certain tasks
that they do that kind of thing.
But Lynne was more concerned it
would take away, like
professionalizing the role,
would then take away from the
peer relationships and would
create a distance with
community. You know, peers
aren't aligned with one way of
thinking or the other, either. I
mean, it's complex, for sure.
Zack Marshall: But it's true.
Well, for some people, a change
would make them personally
vulnerable, right? We're kind of
talking about the difference
between individual people
circumstances and then kind of
systems change. People that are
where the current system might
be working okay for them, they
might say, you know, Let's not
shake this up. It's it's going
okay, like I'm doing okay with
this. I've also heard at the
event that you organized, James,
with Francisco in Halifax, there
I was, I was so fascinated by
some of the responses. I mean,
people were saying, well, also
we're worried what if the
academic researchers don't like
this idea? What if they don't
support it? What if they
basically say, No, we're going
to hire someone else, we're not
going to go with unionized
workers, we're going to go with
other people that we can just
hire independently, that's not
going to be, you know, such a
quote unquote, hassle, and that
we won't have to pay people at
these rates. So it became clear
to me there that I was like, Oh,
right, we also have to get
buy-in. We have to have a
consultation, just kind of
cooperative process to even
figure out how we're going to do
this, and maybe get a few people
that do hire a lot of peer
researchers kind of like to get
on board with it, because it
will require sort of a certain
amount of community, I don't
want to say pressure, but more
like expectations. An
expectation that this is now how
we do this. And this is sort of
like, even if we were to say
specifically within HIV CBR,
that this is how we want to
proceed from now going forward,
you know, this is our sort of
our best option.
Lori Chambers: When I heard you
guys talking about this, one
thing that I was grappling with
is to commodification of that of
certain skill sets...It kind of
brings me back to how the
consultancy model kind of
started about with CBR, where
certain people felt that the
whole notion was broken and
said, I'll be a consultant, you
know, people want to use me,
I'll be a consultant, you have
to pay me these fees. And then
certain people were super
consultants, you know, they did
quite well, and other people
struggled, because some people
were really good at commodifying
their skills, and other people
were challenged by it. And it
still went back to what skills
are valued in the current
marketplace. And I use that
language, I know it sounds
crass, but that's what seems to
could be happening. Granted a
union and a union model, you
hope to strive towards that, but
try against that, but there's
still this sense of
commodification of skills. Which
skills will have currency? Do we
look at everybody's skills at
the same? What happens if
someone can't. you know, like, I
know, some people who are
really, really good at
recruitment, ones that they
always get hired. Do we—you
know, there's all these
different...
James Watson: It's also the
commodification of identity,
right?
Lori Chambers: Yes. Oh, my God,
yes. And that also worries me,
too, in the sense that, so
people will have to, you know,
be an influencer in a sense. And
to be an influencer, you have to
position yourself in a certain
way to be hired. And what are
the tensions of that for a
person who does not want to
position themselves in that way?
Do they jeopardize their, you
know, their their ability to
work in this new field?
Zack Marshall: Lori, can I ask
you a question? James, am I
asking too many questions?
James Watson: No, no.
Lori Chambers: I want a Zack
question.
Zack Marshall: Well, I was just
curious, because I was thinking
right now, at least if it's
jobs, all the jobs have a
certain amount of specific
roles, right? I guess I was
thinking that if, if people were
working within a co-operative
model, then that group basically
then contracts with the
researchers are at the
universities, right? And then
they could have like, multiple
contracts. And so then people
could use their current skill
sets, but also hopefully have
opportunities to build if they
want to. But does it seem, I
mean, maybe you're totally
right. Maybe it's, maybe it is
the consultancy model, is there
a better way? I'm like, Oh, my
God is that—I would love, I
would love to know like, because
we're still thinking about this
so much right? We're trying to
figure it out.
Lori Chambers: And remember, I'm
also thinking about, when I'm
mentioning the model might have
challenges, I'm thinking about
it as a person of African
descent, who's worked with
Indigenous researchers, as well.
And we all also think the model
is problematic, because it's a
Western approach to
collaborative work that hasn't
always worked for us. And then
there's a risk of tokenization
and I have already seen this
happening, where certain
people's identities are hot
commodities in this particular
marketplace, and they will get
the work in particular ways. I
don't mean to be crass, but
there's always a challenge when
doing a model where it's
commodification of people's
skills. I do think there's
promise in the model, Zack, and
I don't want to discount it at
all, but I think you'll—one
thing we'll really have to think
about is, what happens if people
have different skills? Is it a
skills building exercise where
anybody who wants to recruit can
recruit, rather than the person
who's best at recruiting does
the recruitment? Do you get what
I mean? Or people who have
specialized skills, they teach
it to others, but that if that
specialized skill is a home
knowledge or a local knowledge
or Indigenous knowledge, how do
we deal with that? Because
that's where tokenism happens.
What about Idigenous Knowers?
How will that model recognize
that they can't commodify their
knowledge in the same way? They
can't. It's community knowledge,
it's grounded in their home ways
of knowing—there's a tension in
that.
Zack Marshall: Thank you very
much, Lori.
Lori Chambers: No problem. And I
think it's an off-pozcast
conversation.
James Watson: Sorry, I'm
completely distracted. I was
listening and I forgot I was
hosting a show.
Lori Chambers: Yeah, it's an
interesting debate.
James Watson: It sure is. I
mean, there's lots there. That's
another show. Okay, so let's
change gears a second here. So
let's hear from Valerie,
speaking of Indigenous people,
who speaks about why she became
a peer researcher and her goal
to bring research home.
Valerie Nicholson: Hello, my
name is Valerie, and I'm living
in what you call Vancouver, but
is actually the unceded
ancestral traditional
territories of the Coast Salish
people. And I honour the
Musqueam (xʷməθkʷəy̓əm), the
Tsleil-Waututh (səl̓ilw̓ətaʔɬ)
and the Squamish (Sḵwx̱wú7mesh
Úxwumixw). I have been doing
peer research work since about
2011, and the reason that I got
into peer research work was
because the research that was
being done here was not
respectful. It was not taking
into account the feelings of us
taking this research questions.
And a lot of the words they used
were very stigmatizing or
degrading, or it was like they
didn't care. And we never saw
them again after we did the
research. I was asked to be
involved in a research study and
I saw that the questions were
quite disrespectful. So I worked
with them and said, I cannot
take this to my community. I
still live there. So I would
change the words from drug user,
or how often do you abuse drugs,
these are just really not nice
words to be sharing or talking
about one another. And then as I
stayed in with research and
working on other projects and
helping to design them, I
noticed that the research that I
had been a participant in, I
never saw those results, they
never came back to community,
they were always just driving
in, getting whatever they needed
and never coming back. So one of
my true goals is wanting to
bring research home. Bring it
back to community. My future in
peer research....well,
currently, I am a principal
investigator, I have developed
my own survey questions, working
with true allies, getting
funding, but I'm indigenizing my
research, going back to my
roots, going back to walking on
the land with the land. And
really honouring the teachings
that were here before any of us
were, weaving that into the
western research ways, but doing
it in an Indigenous way. And I
see this really starting to
evolve, and we're changing our
language, and it's a journey
that I think is so needed. I can
remember that as a peer, we
weren't allowed or we weren't
invited maybe is a better word,
to CAHR conferences, it was only
for the scientists, the
researchers. And as we started
getting our foot in the door, I
would stand up and say, Why are
you saying mother to job
transmission? Why are you
blaming the mother? You don't
say to me, you know, man to
woman transmission, why are we
putting these labels on it?
James Watson: Let's chat first
about bringing research results
back to the community. I mean,
seems like a no brainer to me,
but this lack of dissemination,
well, it seems to happen all the
time. But I don't think it's on
purpose. I mean, I think
researcher priorities shift and
move, and life gets in the way.
Lori, can you talk to—talk to
that about why it's important to
bring data back to the community
and why it doesn't happen?
Lori Chambers: Yeah, I'll do
both. It's about can
accountability and trust, what
Zack has mentioned. I see
research as a form of
appropriation, and what I mean
appropriating knowledge. You ask
people questions in order to
glean a certain insight that you
don't have, and you do so in a
way to ideally, to benefit them,
so not giving back—is it's not
reciprocated. You're basically
stealing knowledge and not
giving it back in a tangible
way, whether it's, you do an
academic paper, and you don't
present your findings to
community, you do analysis, and
you don't member check it or ask
community members what their
thoughts are on it, or what I
see often happens, well
intentioned researchers, whether
in universities, community-based
organizations, will do this
research with thinking of being
within a limited timeframe. And
then they realize it takes
longer to do CBR. They have a
three year grant, they have to
do some publications, and they
also have to be accountable to
their own job. So they don't
build in this giving back in a
really meaningful way. And so
what happens is they're more
concerned with doing those
papers in the summertime,
because that's what a lot of us
are doing right now, so before
September comes, we have to
start teaching and like oh my
god, how are we gonna have time?
And they're not thinking, Oh
wait, I have to present this
work to community to see if,
what Val says, “deficit
ideologies,” is the language
that I am using problematic, in
terms of how I analyze findings?
Is the ways in which I see the
world through the lens of
somebody else really
problematic? Am I you know,
imposing my privilege viewpoint
on the knowledge? How to
disseminate? A lot of people
don't read community reports,
are we going to do it through a
conversation, or we're going to
do it through a 10 minute
presentation with PowerPoint
slides? So a lot of the tension
is not mobilizing and
translating knowledge gathered
in a way that's meaningful and
fruitful to community, and has
that aim towards benefit. I work
in federal service, too, I'm
right now taking leave, one
thing we also criticize academic
researchers, including myself,
is how do we use your research
for policymaking? Often it makes
great reading in qualitative
research or quantitative
research journals, but how can
we apply your knowledge to
actually better our policies and
programs? So that's my diatribe.
James Watson: Right, fair
enough. Valerie is advocating
for this and quite articulately,
and I know, as a peer
researcher, so is that part of I
mean, can peer researchers make
this happen? Can they hold
researchers to account?
Zack Marshall: Hell yes.
Especially like, people like
Valerie, who and yourself,
James, who have so much
experience and who are so
well-regarded. I begin to see it
as there's a big stop sign in
the road, because there's such a
depth of experience, especially
around peer research and HIV,
and people living with HIV who
are saying, who have done this
for so many years now, who are
saying absolutely not,
absolutely not, you can't get
away with it. You can't get away
with it and you shouldn't even
try, you know, and I know
there's another whole group of
us that are trying to do things
differently. But also, it is
very helpful to know, hey,
someone is going to tell you
like this is really not all
right. I do think the issue of
returning results to the
community, can mean a lot of
different things. Part of me is
like, well, if the research
comes from the community in the
first place, hopefully doesn't
have too far to travel. You know
what I mean? Like if you're
actually doing research in
partnership with communities,
right, like, that's the ideal,
right. But I know with Trans
Priorities Project, like it's
been such good learning for our
team, even though many of us are
from the communities that we
worked with, we have really
struggled with data analysis,
because the project is really,
as Lori said, off this side of
the desk. It's definitely a
labour of love at this point.
And we did work with someone
early on to help us on data
analysis, and it didn't work for
us, the process didn't work. So
we went and we've completely
re-engaged in data analysis in a
much more collaborative way with
our team, but it took us
probably another two years. So
here we are now, finally feeling
comfortable with the work that
we've done, and wanting to share
it with people, but you also
start to feel like, what would
it be like now, when we go back
four years later, you know, to
people and say, we've got our
results, you know, like it just
what we learnt from that process
was actually so different from
what we originally wanted and
thought we would learn and tried
to explore. And so I think it's
really changed us as a group of
people, it's changed us as a
group of community-based
researchers, but also yeah, now
we're trying to figure out how
do we actually report back to
some of the people we talked to,
you know, a few years ago now?
Like I said, some of us I think
we feel like, why did it take so
long, but there was a group from
our team that met every one to
two weeks for over a year, you
know, and got a stipend of, you
know, $1400 each. So like I
said, it's not nothing that
people got, but it's like, they
put in a lot, a lot, a lot of
energy and time and commitment.
And it's not always so simple.
You know what I mean? it
probably looks simple. If you're
like, Oh, you do this, you do
this, and you do this? And then,
but being CBR, it's not...
Lori Chambers: I'm gonna
challenge you a little bit on,
Zack. You are right, I don't
think it is that simple. but
there are different ways in
which you can share with
community, even if it's just the
participants, and that sharing
actually shows you're
accountable. For instance, I am
a firm believer in member
checking, and what I mean by
that is, is going back to the
people who gave you knowledge
and saying, you know, these are
some my preliminary insights.
And in terms of accountability,
saying it might be take some
time before we publish
something, because of this, and
this, and this, and this,
because people talk in the
community. And I find that if
you do those little things of
going back to the community, or
even showing a continued
presence in the community, not
what Val says, you gather the
data and leave, I think
community members will
understand that after four
years, it took you a while. It's
when you, you know, do research
with one community, and I've
seen this happen with the ACB
community, do research with one
community, you gather knowledge,
Oh, this is this is great. I'm
gonna go into another community,
piloting that same intervention,
but tweaking it a bit. But wait
a minute, you didn't talk to the
ACB community whose knowledge
helped shape how you did this
intervention. Shouldn't you?
Even if it's just, This is why
we're doing it, we want to do a
comparison. We're doing another
pilot. So sometimes as simple as
just giving a report back in
some way.
Zack Marshall: Yeah, Lori, I
hear you. No, I hear you. I feel
like part of me, I would say
100%. On a philosophical level,
I absolutely agree with you. But
then I just see what the other
part of what really happens in
terms of people's lives that are
on the projects. And when you
when you do have a deeply
community engaged team, your
team members and we ourselves
are also impacted by what's
going on in our lives, you know,
so that's where it just gets, I
hear you, I just don't know what
I just don't know, part of me is
like, what are you supposed to
say, um, we got delayed by a
year because there were a number
of like, I'm not saying for this
project, but we got delayed by a
year because there were a number
of crises that people had,
because guess what, like, you
know, the people on our team are
also impacted by structural
forms of oppression, like, you
know, they mean it. But I don't
I don't know. But I agree with
you. I do. I'm just trying to
figure out how it works in real
life.
Lori Chambers: Yeah. And I do
understand.I think we agree to
disagree, because I think I am
thinking...But I think in the
real, too, is I think there's a
difference between your tension,
where a labour of love takes a
long time, I've been in those
projects, me and James are on
one right now, as labour of love
that takes a long time because
different responsibilities to
other community projects take it
away. But there's another thing
that I see, too, is, and I think
this is what Val is talking
about, is appropriation of
knowledge without accountability
of where that knowledge is
going. Or engaging in a data
gathering exercise, but not
telling community where that
data is going to be held.
Granted, OCAP principles is very
much integral to Indigenous
peoples, you know, First
Nations, Inuit and Metis in
Canada; however, I do feel that
there has to be some
accountability principles, and
how some researchers gather
data, sit on it, or use it in
ways that the community doesn't
know about and move on. I think,
I think what Valerie's talking
about is not the thoughtful,
contentious issues you deal with
as a researcher, but I think
what she says has value.
James Watson: So let's hear more
from Valerie. So I mean, Valerie
goes on to speak about the
sacredness of the data
collected, and how the knowledge
gained is a co-creation.
Valerie Nicholson: In this
research, every once in a while,
just sit back. And when you're
looking at these graphs, to
remember that we are the voices
behind those words, and that
we're the spirit behind your
graphs. And when you're writing
about the results, and when
you're presenting it to
community, remember, you're
actually speaking about me, or
one of my peers or friends, and
that were in community, and we
are listening to you. And we're
hearing what you're saying. So
just remember, it takes courage
for us to share our stories with
you, our histories, how we've
been treated, sharing our blood
with you, that this is a gift
that we are giving to you, as a
researcher, and to remember
that, that we do this together.
And I think we all need to take
a step back and really look at
ourselves and the work that we
do, but to remember how it is to
be on the other side of the
table. Thank you for letting me
share my words today.
James Watson: So Lori, can you
speak to what Valerie is talking
about here? I mean, it's really
about the co-creation of
knowledge and gathering and
using personal stories of
others.
Lori Chambers: Yeah. One thing
I, I've learned a lot from
Valerie, in terms of the work
she's done as a researcher. And
James Watson: Right. Do you want
to comment on that, Zack?
one thing she reminds me is,
it's not just also co-creation,
it's one where the origins of
that creation stemmed from
community. So she spoken about
it in other presentations, and
Doris Peltier, too, it's very
much a circular, it has to go
back. And it must go back in
different ways. I think this
goes back to some of the
tensions that Zack has talked
about. What are ways in which we
can give back what is co-created
Zack Marshall: I was really
appreciating Valerie's comments
in ways that recognizes that,
yeah, research does take a lot
of time, and sometimes analysis
is not quick and it takes, you
know, life gets in the way. But
I think more so, too, how can we
research be this reciprocal
knowledge gathering exercise
where people do feel valued, in
terms of, I just gave this gift,
which is the wisdom that I have,
and I know that this research,
which I feel will in some way,
give it back to the community,
whether it is in knowledge that
can be used for programming, or
even whether it is in
mentorship, in terms of we might
want to do our own research, can
we be mentored in doing that? So
how do we figure out various
ways in which we can co-create
and give back that's meaningful
for communities.
about data as a gift. It also
gets at this idea that the
university researchers don't own
this information. It's not ours,
right? It might be shared with
us, but it's not ours. And so
this, this leads me to another
piece, which for me is that I'm
starting to think differently
about data collection and
research methods, and that is
changing me. The further I get
into the Shift project, the more
I'm having trouble with what I
would see as extractive research
practices. And so for me,
especially around peer research,
I think there's such an amazing
history and we haven't done a
very good job together of
documenting that and sharing it
together. So I'm personally a
lot more interested in
approaches that might be seen as
archival, sort of oral
histories, like what you're
doing, James, within the
community and access within the
community in ways obviously that
work for the people who've been
involved. And I've seen, say
someone like Viviane Namaste,
has done this type of work. And
so I just think, should we be
leaning more or and I know other
people do this type of work, but
it's just been pushing me to I
think how do we do this
differently in a way that is not
so much like, we're going to
talk to you or we're going to
talk together, and then we'll
have these recordings and then
these transcripts. And then
right now it's not working for
me in terms of how I'm thinking
about this, and I'm really
appreciate Valerie's words about
that.
Lori Chambers: Yeah, I feel
people such as Valerie, and I
mentioned Valerie and Doris,
because their work has also
informed my approach that I've
shifted to. I see myself less as
a researcher, now more as a
storyteller. We use arts-based
approaches of narrative, whether
with Because She Cares, we're
using performance and spoken
poetry, and we see it less as
research and more as knowledge
gathering knowledge sharing. And
I see my role less as a
researcher and more of a
caretaker of people's stories.
And it was funny because I
remember another pozcast I said,
"caretaker" and someone said,
It's really interesting, you use
that word, because I actually
see how you do it. And I
thought, it's interesting when
you shift the language when you
say knowledge mobilization
instead of dissemination, if you
say knowledge gathering and
sharing instead of
dissemination, again, and data
collection, and especially if
you say caretaker, versus
researcher, how it also shifts
your practice, and how you might
be perceived as a person who is
part of a collective caretaking
people's stories.
James Watson: Okay, kids, that's
fantastic. We're gonna leave it
there. What a great chat. That
was wonderful. I do, I do have
to do my five rapid fire
questions. These are the same
questions that I asked Lynne and
Tim. So Lori, I'll start with
you.
Lori Chambers: Why me? Okay.
Zack's better at this, start
with Zack.
Zack Marshall: Okay.
James Watson: All right, I'm
going to start with Zack.
Gymnastics for track and field?
Zack Marshall: Track and field.
James Watson: Okay. There is no
wrong answer. Okay, truth or
dare?
Zack Marshall: Truth.
Intelligent or funny?
Oh God. Oh, please don't make
me—I don't know about that one.
It feels ableist to say
intelligent.
James Watson: Oh, wow, snap.
Okay, all right. Passenger or
driver?
Zack Marshall: Driver.
James Watson: Rich or
successful?
Zack Marshall: It's so bad that
my first reaction I'm like, Oh,
don't say that. I'm like, what's
the difference? No, no, no,
that's not true. Successful?
Neither?
James Watson: Thank you, thanks,
Zack. Lori, Lori, gymnastics or
track and field?
Lori Chambers: I am Jamaican.
So, track.
James Watson: All right. Truth
or dare?
Lori Chambers: Dare.
James Watson: Intelligent or
funny?
Lori Chambers: Funny.
James Watson: Passenger or
driver?
Lori Chambers: Passenger.
James Watson: Rich or
successful?
Lori Chambers: I will say
successful, but I'm—how do you
define success? It all depends.
James Watson: So are you saying
successful or rich?
Lori Chambers: Well, today I'm
successful in answering your
five questions.
James Watson: Thank you both
very, very much. Thanks for
coming on the show. That was
fantastic.
Lori Chambers: Thanks for having
me, James. I really enjoyed
talking with Zack. It was
awesome.
Zack Marshall: Thanks very much,
Lori.
James Watson: 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
pozcasts4u@gmail.com. That's the
number four 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 can
be visited online at
positiveeffect.org. Technical
production is provided by David
Grein of the Acme podcasting
company in Toronto.