Some take on leadership by choice, others by accident.
Says Wayne Bristow, PositiveLIte.com writer from Guelph, Ontario “the first time I thought about learning more about HIV and myself was in 2006. I took the Positive Leadership Level One course. I was about to lose my job of 27 years and I thought the course could help motivate me to move forward with my future. It was during the course that I learned it was designed to find the leader in me. What I gained from it was the knowledge and confidence I needed to make a plan and work hard to make it a reality. A year later I was back in the workforce doing a job I absolutely loved, a first for me.”
He later applied for Level Two, “At the time I was on the Board of my AIDS Service Organization and had some training in Board Governance. On completion of the course I ran for a position on the Executive and I'm now the Treasurer. When an opening comes up for Level Three, I will be registering.”
Wayne is talking about the Positive Leadership Development Institute, a free training program for people living with HIV that was started by the Ontario AIDS Network (OAN), later partnering with the Pacific AIDS Network from B.C. The institute’s mission is to offer HIVers “an opportunity to identify and develop leadership skills”, coming from a core belief that "strong leaders create stronger communities”. Since its origins in a 2005 strategic planning process which identified the need for a leadership development program for people living with HIV, some 300 HIVers have participated in the program.

These 300 include me, by the way. I only completed level one – as an old-timer I felt I already had the skills that the rest of the program offers – but I came out of it impressed by what was going on, and an enthusiastic backer of the program. I do remember how intensive the process was though; these are serious courses. Mine was residential, and it was hard-work, albeit lightened by a great sense of camaraderie and team building amongst those present.
Those were early days. Since then, as I thought it would, it has gone on to become a huge success. Participants love it; there is always a waiting list, and its two independent evaluations have both recorded significant benefits and the majority of its goals realized
What has got people fired up? My take is its relevance – a program that really does meet the needs of HIVers looking to step up their involvement, either inside the AIDS Service Organization (ASO) framework – probably the most popular route – or in outside endeavours.
The program consists of three modules. Level One asks the question “Who am I as a Leader?” in which participants are introduced to the practices of exemplary leaders. Here are five that they come to know well:
- Model the way
- Inspire a shared vision
- Challenge the Process
- Enable others to act.
- Encourage the heart
Module Two “Bored? Get on Board” introduces participants to, as the name suggests, board work. Module Three covers communications skills – conducting effective meetings, facilitation, public speaking and presentations.

I asked Rick Kennedy, Executive Director of the OAN, about their collaboration with their partner organization on the west coast. ”We’ve now formed a partnership with the Pacific AIDS Network” he said. “They are full partners with us – shared decision making, shared ownership – and what’s really interesting for us is that the facilitators, the trainers we are using now, are from both provinces, so we send them back and forth. The next few months we are going to Moncton and we’ve had people from Alberta come through as well. There is certainly an appetite for this nationally.”
Here is something else important: everyone teaching the workshops is HIV-positive. One of them,TJ, is coordinator for the entire program, working out of the OAN’s downtown Toronto office. TJ is an example of someone who came though the program. She took the program in June 2008 and. she says ”I knew they were on to something. There were many "aha" moments. I saw much of myself through examples. I know there were a lot of times those examples were talking about me. So I definitely came out of there with a different mind-set, different thinking.” Ed Argo,one of the long-time trainers, asked her if she had ever thought of facilitating. She started last November, going out to BC for training there.
There are testaments aplenty. The Positive Leadership Development Institute published a book about the program in 2010 called Positive Change Makers that’s full of them. It’s dedicated to Pius White, a well-known figure in the movement. Pius graduated and was an enthusiastic backer of the program. Interviewed before his death in 2008 he’d said “I’m looked at as a peer and a leader by staff and clients of AIDS Thunder Bay. It feels good. It actually does. It shows that what I am doing counts.” Pius had parlayed his leadership skills to re-enter the workforce in fact, in an entirely new field for him, acting as a Peer Research Assistant for the Ontario HIV Treatment Network.
There have been two independent studies of the impact of the program, the last an impact evaluation conducted in January 2011. It interviewed twenty-five participants and heard from a further sixty-five responding to an online survey. Here are some of the results
- 80% of graduates reported having a greater sense of self-worth as a result of attending the institute (this was observed by 79% of ASOs responding)
- 85% reported improved confidence
- 60% of graduate reported they were taking in new leadership roles and seeking new skills
- 75% reported they felt more meaningfully involved in the HIV/AIDS movement
But many of the results are also good but less tangible. One leadership graduate, for instance, said “I just felt this overwhelming feeling of, I’m not alone. I really felt like that. I felt there were others out there just like me and I felt so connected to a new network of people.” Another said “being able to speak up and stand for what I believe in and fight for it - that has made me a lot happier. A lot easier to live with”. Another said ”I’m able to resolve conflicts better with my partner, with my co-workers and use active listening skills and just really effectively communicate , whether it’s on a social basis or on a professional basis.”

Memorable moments? Rick Kennedy remembers a number of years ago, marching in a contingent in the Toronto Pride parade, with a “strong leaders create strong communities: banner. “It was a bunch of us saying we are positive leaders” that counted. “That and the fact that the training has now taken off in BC as strongly as it has is an indicator of success. People indicated that they were more comfortable with (HIV) disclosure, if they choose to do that. And as a vehicle for employment we’ve also seen some success”.
Graduates have acknowledged that some challenges remain. More support is needed to help HIVers become more meaningfully involved in the movement. For example, some people reported that few opportunities existed at ASOs for them to be more involved. Some graduates also suggested that they need more support for learning how to apply their leadership skills in the community.
Rick Kennedy stresses that the skills learned are readily transferable to environments outside the ASO network. “This is not an ASO aquarium, an ASO factory” he says.. “It leads to opportunities outside the ASO movement .You could equally go on the board of the Humane Society, for instance.”
He also cites the work being done to facilitate engagement of HIVers through the Living and Serving Project. This is a significant body of work which kicked off with the late Charles Roy’s 1995 evaluation of how ASOs were doing, and a follow up review conducted in 2007 essentially reporting not enough had changed. Living and Serving 3, a 2011 plan of action published just this last September includes the brand-new Ontario Accord, a statement of solidarity with GIPA (the Greater Involvement of People Living with HIV/AIDS)
Another challenge Kennedy acknowledges is reaching HIVers who are not tapped in to the network of ASO’s that the OAN represents Says Rick “our outreach is mostly through ASOs, although we have run ads in a number of publications throughout the province, with some success. We would like to do that more. However we still experience waiting lists, so it upsets people sometimes, but we do envision doing more.”

Then of course there are funding constraints. Enough said.
There is no doubt, though, that the Leadership Development Training Institute has upped the ante for HIVers in the jurisdictions in which it is available. Making a difference has never been easy, and it can still be a struggle, but there are ways now that HIVers can upgrade their skills at no cost and have a better chance of success, In fact that’s clearly happening already, in three hundred different flavours.
To find out how you can participate, go to the Ontario AIDS Network website or the Pacific AIDS Network website for more information.