Keynote Address Delivered by CATIE E.D., Laurie Edmiston, at the October 2010 PAN AGM

Kevin Brown
Dr. Peter Jepson-Young
John Turvey
Julio Montaner
Glen Hillson
Michael Linhart
Zackie Achmat
Pei Lim

Irene Goldstone
Deborah Money
Paula Braitstein
Lucy Barney
Emma Palmentier
Louise Binder
Diana Johanssen

Some of these individuals we’ve lost to HIV.  Some of them are still very much alive and kicking.  They’ve often been targets for criticism – criticism they were prepared to stand and take.

Often they have been egotistical, difficult people. But in equal measure, they have been courageous, visionary, and inspiring; pioneering new paths and deserving of the mantle of ‘advocate.’

 All of the names I have read are people I would call leaders.

And the names I just read are only a very few of the many leaders who have made a difference in our movement.


I’ve been asked to speak about Leadership in the HIV movement.  Evin asked me to reflect upon my own role as a leader and upon CATIE’s leadership role nationally.

I’m going to begin by sharing some of my personal and professional experiences as a leader and manager, and close by sharing some of my thoughts about the types of leaders the movement needs today and my views on the challenges we face in strengthening our movement. 

Often some of the best and most memorable lessons are learned early in your career.

My first “job” as a leader was manager of a residential treatment home for emotionally disturbed teenagers.

Soon after I started, one of the kids let it slip that a few months earlier, a couple of the counselors tried to change drivers while driving a van full of kids on the highway. The van swerved and they realized it wasn’t a smart thing to do and pulled to the side to change drivers. They told the kids and the third counselor driving with them, to not tell anyone – in itself a shockingly poor judgement call in a treatment setting for disturbed children.

I told my boss about what I had learned, and she exercised appropriate leadership – she told me it was my decision what to do with this new-found information.

I knew that if I fired the counsellors there would be hell to pay, that all the counselors and kids would support the fired counselors with whom they had lived and worked for a number of years, and that the new boss – me – would be labeled a hard-ass.

My decision? I fired the counselors. Quite quickly, I came to the conclusion that I had to fire both of the counselors, as I couldn’t justify to the children’s parents that their children were safe with counselors who had exercised such grossly poor judgement.

Following that, there was an unexpected positive benefit, which was a most pleasant surprise to me as a new manager.

The message in the firing was implicit and loud and clear: A higher standard of care and safety had been established. And that proved to be a welcome change by all.

In that incident of our renegade counselors, I learned three important lessons of leadership:

  • To go with my gut on what is the right thing to do
  • To be clear and unwavering on the bottom line
  • And to be prepared to be disliked

I started my AIDS work in 1986 as the Manager of a program for street youth in Toronto called Youthlink-Inner City.

It so happened that I landed in a setting where the previous Manager had been largely absent, the program rudderless and the staff demoralized.

The program had devolved into a drop-in where the staff would hand out cigarettes and chat with the kids. I started there replacing burnt out light bulbs and throwing out garbage – literally cleaning up the site which had become dark and filthy.

I banned smoking inside, put staff back out on the street to do outreach (and to smoke), started needle-syringe exchange on the premises and on the street.  In addition to providing training and other learning opportunities for the staff I also modeled the behaviour I expected from them.  I intervened when conflicts with or between the youth threatened to become physical or dangerous, I joined staff for outreach shifts on the street, I exchanged needles and syringes.

I was fearful of public speaking, but forced myself to do so at city hall as I advocated for needle syringe exchange and funding for HIV. I cajoled free condoms out of condom companies and pushed my resistant colleagues in hostel services and elsewhere to also freely provide condoms. I learnt how to write proposals. I’m not sure if that is a leadership skill, but it sure comes in handy if you’re trying to get funding.

I conceived of and pulled together a committee to hold what we called the “First National conference on HIV and Youth”.  I insisted that the conference be opened by the HIV positive person on our planning committee and that the first and last plenary should be a panel of positive youth, which 20 years ago some felt was revolutionary.

I learned that assertiveness, in some contexts, is not always appropriate in the role of leader. Youthlink-Inner City involved shift work and we were working closely with some very difficult youth, and we had daily staff meetings. I was accustomed to offering solutions a little too readily which didn’t help staff to jointly problem-solve.  So as well as all the skills I learnt in doing things for the first time, I also had to learn to back off, and trust the group’s ability to learn from the problem solving process.

So I learn that being a leader also meant:

  • Being willing to roll up my sleeves and do what needed to be done, including cleaning
  • To not ask my staff to do what I wasn’t prepared to do myself
  • To sometimes back off and let others come up with their own solutions and learn from their own mistakes

When I started as ED of TPWAF, there had been significant turn-over of EDs.  The previous ED had only been there for 6 months but had managed to intensify the poisonous relations between staff and board.

I was a heterosexual sero-negative female coming in to an almost exclusively poz, gay male staff group………….and even worse, I was five months pregnant and only hired on an interim basis until the board found the perfect candidate.

The board was dysfunctional and over-involved, the staff frustrated, suspicious, burnt-out and working to rule.

Mostly what I did there was common sense and common courtesy.  I started weekly staff meetings, and rather than lose good people to burn-out, allowed people to take unpaid leave of absences or to work part-time for a period of time.

I mandated a staff day out of the office, brought in Yvette Pereault from the Ontario-funded bereavement project who facilitated a healing process that really helped crack the back of the mistrust felt among staff.

I got involved in board recruitment and over time my board chair, who I was very fond of but was also unreliable because of his increasingly problematic drug use, was replaced by another who really helped establish a policy governance board structure.

One of the problems I inherited when I started at TPWAF was an outstanding wrongful dismissal law suit.  The board had hired a lawyer and totally dug in their heels to defend their position.  The more I learned about the case and the more I witnessed the board’s defensive actions, the more I came to side with the fired staff person.  At this point the new Chair was in place, but the rest of the board were the “old guard” who were prepared to continue to spend agency funds on the lawyer to defend their position.

At one point, with the knowledge of the new Chair, but unbeknownst to the rest of the board, I risked the board firing me for insubordination and went totally off program and had a private meeting with the litigant.  I brokered a fair settlement with him (which I am confident was for less cash than we could have spent on the lawyer) and put the case to rest.

Leadership lessons learned:

–          To go with my gut

–          To do the right thing

–          To take calculated risks

At CATIE, the greatest leadership challenge I’ve dealt with was in relation to my national colleagues.  Most of you are aware that 3 years ago our funding was enhanced to take on the role of KE broker for the full continuum of HIV prevention, care, treatment and support.  PHAC has given us approximately one-third more funding and more than double the work – from focusing on treatment info for PHAs and the individuals and agencies that care for them, to also including HIV prevention KE for all frontline agencies that work with people at risk – youth agencies, aboriginal organizations, community health centres, public health and sexual health offices, etc.

Although we feel quite proud about how much we have accomplished in this time, our efforts were not without a cost.

The RFP for the KEB explicitly called for a sole provider – unheard of in previous national HIV funding calls.  Some of the NPs felt that this was strictly an attempt to decrease the number of National organizations, but although I was equally taken aback by the intention to only fund one provider, I think the RFP really set out a clear vision for the integration and coordination of efforts to assist frontline organizations through brokering HIV knowledge and information.

I spearheaded an attempt among the NPs to develop a vision that we could jointly submit to PHAC.  But we were unable to do so within the time allotted and our facilitated meeting devolved into horse-trading and pressure from some parties for CATIE to volunteer to cut staffing and activities in order to jointly submit a proposal with the other NPs. 

I was genuinely prepared to make the case for a voluntary funding cut to my board, if we had been able to develop a joint proposal that truly presented a coordinated KE plan that would better serve PHAs and frontline agencies as well as meet the conditions of the funding call.

At the end of the meeting I had to declare that I was unwilling to voluntarily request a cut to CATIE’s funding and activities.  It was the worst meeting of my entire career and the pressure continued with attempts by a number of the NPs to get me to agree to jointly submit with them, as well as a call to refuse to submit a proposal to PHAC in protest of their criteria to only fund one KEB.

CATIE was on our own, and CPHA organized all the other NPs to jointly submit.  Our proposal set aside $600,000 to subcontract CPHA to continue to run the clearinghouse, though CATIE would take on other prevention KE activities.

When we were awarded the KEB role, PHAC told us we couldn’t subcontract with CPHA without making a business case for doing so.  We developed an RFP for a distribution centre, received 13 proposals and were unable to justify subcontracting to CPHA.  CPHA’s proposal was the most costly and offered the least service.  Ultimately, they couldn’t offer the same economies of scale that distribution houses could.

So, in effect, PHAC set up a situation which caused conflict between the NPs and effectively downloaded the closing of one of the funded programs, CPHA’s clearinghouse, to CATIE.

So what are the leadership lessons here?

–          It’s bloody hard being an ED

–          Be prepared to compromise and look at the larger picture

–          Be prepared to be disliked

Some of the leaders whose names I read at the beginning of my remarks were HIV positive activists, who lived and breathed HIV work and whose very lives depended on demanding change.  They organized the protests and founded our organizations.  Their role was critical and it is to their credit that as a movement we have made the gains that we have.

We have lost a great many amazing activists to this disease, and we are no longer as able to pull together a protest or a die-in.  Perhaps for many years the need wasn’t as great as treatments became available and PHAs rose from their deathbeds and returned to work, often to work within the movement.  But we have lost ground in recent years, especially under the current federal government’s regime.

One good thing that is happening on this front is that the Toronto-based HIV activist group AAN! has re-emerged in the last couple of years.  They are responding to the challenges posed by the current political climate, assuming the roles of advocacy and communication that PAN has played in relation to some of the funding cuts some of your agencies have experienced here in BC.  AAN! has been meeting regularly, has dozens of new members, have identified various actions and set up committees to move these agendas forward.  One of these is the development of a fact-based video that can be released on Youtube, which when it’s completed I’ll make sure PAN gets to circulate.

Another leadership challenge to our movement is the decrease of PHA leadership within our organizations.

Many of our organizations were founded and staffed by PHAs.  Many are still operated with significant PHA volunteer labour.  But indications are that fewer PHAs are entering and engaged with our work.  It’s great news that PHAs are living longer and healthier lives and can labour where they choose – but our agencies and thus our work suffer without significant PHA involvement.

The PHA Leadership program that PAN and the OAN have implemented holds great promise on this front.  Some of the job postings for Ontario HIV organizations are listing completion of the PHA leadership programs as desired or mandatory qualifications for the positions – which is a great development.

 Some of the names I read at the beginning weren’t at-the-podium advocates, but more behind the scenes allies, those who advocate for change from within, and who manage change as the environment and other variables evolve.

In Ontario we are mourning the closing of VOICES of Positive women.  Started by CATIE’s Darien Taylor and another positive woman 20 years ago, VOICES recently was forced to close its doors.  For years VOICES has been beset by operational and governance problems that negatively impacted service delivery.  My perspective is that VOICES demise was a failure of leadership.  The demographics and needs of positive women in Ontario have changed significantly over the last decade and the governance structure and services had not evolved accordingly.  The funders were initially passive and latterly inflexible in defunding the agency, in my opinion, without intervening in a more aggressive and directive way earlier.  In our field, when leadership fails, PHAs lose out.

Leaders within organizations must be realistic, be prepared to compromise, and be prepared to make hard decisions knowing that some people are going to be displeased.

There are 3 other areas we are challenged as leaders within the movement.  It is absolutely essential to partner.  It is great that PAN has partnered with the OAN in the PHA Leadership development program.  Without a doubt CATIE is only able to do our work nationally through partnership with PAN, other regional, local and population-based organizations.

Partnerships are hard work and the political climate we are working under is enraging and frustrating.  Particularly for those of us who have worked in the movement for many years, it is demoralizing to have to defend basic common sense tenets so essential to our work such as harm reduction, when we thought we had won that battle so many years ago.  But we must meet the challenge to stave off cynicism and negativity.  We must facilitate and welcome youth into our movement and nothing is more toxic than negativity.

In summation, I see the current challenges to Leadership within our movement as:

  • We need to grow and mentor activists
  • We need to grow and mentor PHAs to work and volunteer in the movement
  • We need to welcome and mentor youth to work and volunteer in the movement
  • We need behind-the-scenes leaders in our agencies, good managers who will sustain strong agencies, who are realistic, prepared to compromise and prepared to make hard decisions
  • We need to partner, with each other and with allies outside our movement, such as housing
  • We must be optimistic.  Our movement has been tremendously successful and we can continue to make a difference.  Let’s smile while we’re doing it and treat each other with courtesy and respect

At the beginning of my remarks when I listed the name of various leaders, I intentionally didn’t name anyone that I suspected would be in the room. I didn’t want to single out a few and omit the many.

But, ultimately, if you’re here right now, you are a leader in HIV in your agency, in your community, in BC, and in Canada.  We need all of us.