3:55PM Dec 21, 2020
Welcome to pozcast, the show that puts the positive in podcasting. Our program is created by and for people living with HIV. And we're here to explore HIV research in ways that matter. We're pozcast and we're bringing HIV research to life. Today you'll hear the views and ideas of our pozcast guests, and while we respect their expertise, they do not speak on behalf of the Ontario HIV Treatment Network or Universities Without Walls. I'm your host, James Watson, a person living with HIV and a community-based research coordinator. I'll be your guide for today's journey into HIV research. Have you heard about GIPA? GIPA stands for the greater involvement of people living with HIV, and it's a set of principles that highlights engagement, equity, and social justice. And it came about from a sort of 'nothing about us without us' kind of activism. The GIPA principles were ratified in 2006 by 192 countries as part of the UN's declaration of commitment on HIV and AIDS. The benefits of this activism and formal declaration are wide ranging. But today, I'd like to focus on GIPA in the workplace. Our ongoing commitment to GIPA has put people living with HIV at the center of the movement, and paved the way for HIV lived experience to be acknowledged as expertise, for clients of AIDS and allied organizations to become employees, and for the researched to become researchers. I owe my career to the activists who fought for the principles behind GIPA. For our right to meaningfully engage in the research, discussions and decision making that affects our lives. The GIPA principles inherent to community based research opened the doors for me to get back to work after 10 years on government supports. I was hired in part as a pure research associate, because being HIV positive was a mandatory condition of employment. And then again as a research coordinator, because my HIV status connected me deeper to the work and to the community. So thank you, GIPA and thanks to all of you who got us here. But there are challenges. For instance, what supports need to be in place to promote meaningful and fair engagement of people living with HIV once they're hired. Should HIV be treated any differently from any other illness in the workplace? Can GIPA hold its ground against competing priorities in a sector squeezed for resources. Implementing GIPA is complicated and takes commitment, and time and of course money. To discuss all these issues and more, I spoke with two people passionate about GIPA, who are living with HIV, and work in the sector. I'm also fortunate to be working closely with both our guests on a project called Project PEER. A study that looks into how people living with HIV and working in the Canadian HIV sector are being supported, and how the GIPA principles are being put into practice. Marvelous Munchenje is a Program Coordinator for Health Promotion and skills development, a project for African and Caribbean women living with HIV at the Women's Health in Women's Hands Community Health Center in Toronto, and principal investigator of Project PEER. Andre Ceranto is a Project PEER co-investigator and the manager of community programs, volunteers and peers at Fife house, an organization that provides affordable supportive housing and support services for people living with HIV in Toronto. Let's chat first with Marvelous, a tireless HIV advocate and educator and ridiculously busy so I'm thrilled she made the time to drop by to see us. Diagnosed with HIV 22 years ago, she has spent the last 17 years in the HIV movement. I'm a great admirer of her work. When you started out in Canada—
—were you working at an AIDS Service Organization?
I don't work within an AIDS Service Organization. I work for a Community Health Organization, but I'm in charge of the HIV department. So I'm the one who does case management, I also run the health promotion and skills development groups, I also accompany clients to court or for—to ODSP and things like that.
So your hiring policies or your agency where you work, do they are they representative of GIPA do you think?
Not really but right now I'm the only one...
Oh are you? [laughter]
I'm the only one who's open about my status.
But when I got already in the position, I—they knew already that I was HIV positive, but they were accomodating that from the beginning, maybe difference was me, and I forgot. I'm out. And I've been already—when I joined the organization, I was already out of as my status. So I actually knew exactly where I wanted my accommodations.
So that's an interesting tension, right?
I mean, whether you're if you're not out about your status, then you're not you can't be accommodated.
So do you encourage people then to be out about their status?
Not really, because there's also repercussions for being open with the status. Maybe it might not in there.
But like, for example, the same that happens in universities. I was addressed on—I was in the accommodation department, the the man, this instructor didn't have to know that I'm HIV positive.
I just went to say I could take—my doctor just wrote that she's got an episodic disease, that she needs accomodations.
Right. So GIPA, being the greater involvement of people living with HIV or meaningful involvement of people with HIV. How do you make room for people living with HIV, if they haven't disclosed?
So depending, it goes back again to the position, maybe you don't have to call that position "a peer support worker". You can find innovative ways.
A health promoter or something. Because when you—when you seen as a peer support worker within an HIV program already, they're known as being HIV-positive, whether they are or they're not. So maybe finding ways of naming the role, but also knowing that the person when you advertise the job, even if you say, it is open if you have HIV, you are considered more, people might not know until the person—unless if the person is open about their status, because it sometimes it takes a time for people to feel to want to sense the environment within the organization. If they accepted or not, then they can open up. But I have known people would do within agencies. They are providers, but they don't disclose the HIV because they felt unsafe.
How did you approach getting support and accommodation for yourself?
So for me, when I started, I was only contract, my position was funded by the Trillium. So I didn't have vacation days, I didn't have sick days, when I started I had a few if I can remember a few days, but my vacation days were not as contract so it was for one year. So I didn't even I was on ODSP I wasn't covered by greenshield. And then we had to advocate to say, I need accommodations so that I can be still on ODSP, I have to report every day, after every month and all those things. And then we looked, they looked for more funding, and we got funding from the AIDS Bureau. At that time, also, when I was a contract, it was not easy for me if I'm sick to go home, because if your work is a contract, you could sit in hours, and I didn't have as much sick days. So we we discussed—we discussed as a group as Women's Health, we brought it to the board and we didn't bring it just to address me as a person living with HIV, we just took it as any other person who comes who has also an episodic disease should be accommodated. So we came up with bank—live bank. So my sick days, if someone doesn't use their sick days, you can bank them. And anyone else can borrow from from that bank, for example, if I have only five days left, but then I get very sick, I need 15 days, if you haven't used your days, you bank them, you just told resources I'm banking five of my days, that that person banks, so anyone can have access to that.
Can I have some of your days?
[laughter] So it has been very helpful. So when—if you structure it in a way that is only for HIV positive people, then people will be resistant. But if you look at it that anyone can have cancer and might need also accommodations, anyone can have diabetes, they might need accommodations, then they say more buy in than just looking at say HIV, because people they will say what's so special about HIV?
Let me ask you this, if I could. So with advances in medicine and science, and more and more people staying in work and HIV being recognized as a chronic, manageable illness, right? Episodic. ASOs being stripped of funding, right? ASOs becoming more and more corporatized in a way. I wonder is GIPA dead? What's our rallying cry?
It might be a little bit dead or half dead, because I'm trying to see if it is a scenario where you have to cut down jobs, people's jobs will likely to be cut down. If I am a just a person who's working there informally or formally, but I don't have a degree or someone perceives me as if I don't bring a certain expertise, of course I'll be the first out of the door. And sometimes you're not taught directly that's the reason you're going, they'll find ways. With our jobs mostly is people living with HIV, it's like they're not even on the organogram. So maybe you are just there you've been providing support, but when you look at the organogram of the organization, maybe you're not even there.
And then if you look, for example, most of us are being recruited as Peer Research Associates. So then, when you look at what the organization is doing, in your role, you are mostly going to go unless if people invest in actually making, making sure that we're salaried, if we've got a salary we're just like any other employee, and not just paid as a volunteer, then I feel safe. But if I don't, in some cases, some people don't even have contracts.
They don't if you ask them do you have a pay slip, they don't have payslips. So unless if organizations, even if the funding is difficult to get, and we know that difficult to get at least you can also contribute knowing that I want to position myself that if funds go, if they look for other funding outside of the HIV, I'll still be able to to to remain in the organization. But also what I would also argue to my friends, who are also HIV positive is, I didn't just come—like for me, I had to work hard also to go back to school. But since not everyone can manage to go back to school, but you can also build your skills and your capacity with there's other programs that go on that are free. You don't have to pay anything if you can, if you cannot because of the disease or because of the condition that you have, then find ways of how else if this happens, have a plan to say if they like now sometimes, what about if ODSP stops? Tomorrow, we're told there's no ODSP. What am I going to do to survive? So it's always having Plan B and find ways of how else can I sustain myself if if in my volunteer job goes.
You're listening to pozcast, a joint production of the Ontario HIV treatment Network, and Universities Without Walls. I next wanted to talk with Andre Ceranto. Positive since 2005, Andre is an avid advocate for the greater and meaningful involvement of people living with HIV. He began as a client at an AIDS Service Organization, then a volunteer and is now management at Fife House. He has been involved in many initiatives focused on GIPA including co-chairing the GIPA/MEPA Advisory Committee at Fife House. You you've had a really interesting process, really a transition because you started as a client at an AIDS Service Organization, right?
You, you then volunteered, and then you became staff, and then now your management.
I mean, that's, that's, that's pretty exciting.
Yeah. And I think that's, you know, wouldn't say only because GIPA/MEPA but I think GIPA/MEPA had a very big role in all of that. So when I first started at ACT my job was around prevention for the Portuguese speaking community in Toronto.
And ACT being the AIDS Community of Toronto.
AIDS Community of Toronto, yes. So it doesn't matter if you are positive or negative to do the job, because mostly, I was doing prevention, but I was very passionate about the prevention work that I was doing. Because as somebody living with HIV, I always thought the time that, you know, if I can teach people something and help to prevent one infection, then I will be happy about it. And I think, yeah, if I wasn't HIV positive, maybe it would have a passion, but not if not at the same passion that I had. And then, you know, moving on in my career, when I was still at AIDS Community of Toronto, I was working in the positive youth outreach, where I was working directly of -- direct directly with youth living with HIV. Then I could see for myself how working with other PHAs how being involved in their work and knowing and having that exchange with other PHAs was was so fruitful for me in terms of learning about other people experience experiences, but I also sharing my my own experience with other people. And then you know at PWA where I got—
People with AIDS foundation [PWA]. So where I got the job specific, specifically because it was a peer position, it was a job for that GIPA/MEPA was imbedded in the core of what the work that we had to do.
So you got the roll because you're a person living with HIV.
And why is that?
Because they need somebody with lived experiences to to engage, engaging with other people living with HIV to train them, preparing them. So I was responsible for the speaker's bureau and the post prevention program. So lived experiences, or lived experience for that role, it was like the main asset that they're looking for.
And so so why do you—why do you think then the lived experience is so important in the HIV sector?
Because I think only people living with HIV. And everybody in a very different way, I think went through things in their lives, that other people that are not living with HIV, they will not understand. So and I think having that opportunity as a PHA to voice that experience and to help to guide people that are not living with HIV in terms of how to provide services, how to change policies, I think makes the whole difference. I think, you know, quite some times, people with the best of intentions trying to come up with programs for PHAs that are sometimes proven to not be so effective, because they didn't have PH—people living with HIV input.
Right. So do you think then that Okay, so we've arrived, GIPA is here that we're fully sorted? Or is there work to be done?
Well, it's interesting, because I think it's just the first step. And that's where really the work starts. Because, you know, sometimes it's not that easy to engage PHAs, or to keep them engaged, because they might have different interests, because sometimes they feel frustrated, because they, they voice -- their voice is not heard. So me in my position currently, and as somebody living with HIV, every time I interact, or I work with other PHAs, I can project myself and I can see myself in their position, when they come with, you know, a wish or a complaint or, or a suggestion, I can imagine myself in that position. And then I think what I can do in my current, currently current role, that I can make a difference or can make that person feel heard or feel valued, feel part of what we're trying to build.
Well, now that you're in a management position, you that you have, certainly more power, right. So how do you plan on making change with GIPA in your organization?
So in my current job at Fife House, as the manager of community programs, volunteers and peers, a big part of my job is engaged other people living with HIV that we call peers at Fife House. Which means that, you know, we always had people living with HIV contribute, contributing and participating in the organization, volunteer roles and other roles. But I think, from the past few years to now, Fife House has been very intentional in making sure that the people living with HIV are in the core of everything that we do.
I want to thank my guests, Marvelous and Andre, for chatting with me about their experiences with GIPA and how it looks in the workplace. We heard today about some of the complexities when trying to implement the GIPA principles and it seems clear to me, that it's up to us to stay the course and push boundaries. We need to make sure that people living with HIV are at the center of the movement and are the center of the decision making that affects our lives. I'm heartened to know that people like Marvelous and Andre are out front championing GIPA and working hard to adopt and advance the progress already made. 'Nothing about us without us' still echoes loudly with me. What about you? I'm James Watson signing off for pozcast. 'Til next time.