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Saturday 11 April 2015

Decades of making a difference - Pt1

Posted in: Our Communities, Health & HIV
By Jay Bennie - 30th November 2014

Bruce Kilmister
On Friday afternoon Bruce Kilmister boxed up his personal effects and for the last time switched off the computer and turned off the lights of the CEO's office at the nation's biggest and most influential HIV-positive people's peer support and advocacy organisation.

When Kilmister joined the nascent organisation it operated out of one small grace and favour office at the AIDS Foundation's Auckland Burnett Centre. It eventually developed into drop in centre, a counselling and support facility, a national advocacy service with a small staff backed up by willing volunteers. Generally those volunteers emerged from those who had at one stage or another had to rely on Body Positive to advocate for their needs and offer practical, sometimes life-saving, support.

More than any other person Kilmister came to represent the organisation in human form. His commitment, tenacity, readiness for a fight when there was no alternative and determined advocacy for the welfare of HIV-positive people, mostly gay and bi men, earned him many admirers and just a few detractors. It's no secret that he would go up against those whose ethos or focus was different to Body Positive and not in what he considered were the best interest of HIV-positive people. In dealing with the Ministry of Health, HIV specialists, drug companies, the AIDS Foundation itself, Kilmister, backed up by an ever-changing board and those tireless volunteers made sure HIV-positive gay and bi men, and others, got as fair a deal as he could negotiate.

Kilmister's almost forty-year journey as a gay and then HIV-positive man to the GM's office at Body Positive started way back when he first became aware he was 'different.'

“I think I was probably about seven years old when I started finding that I thought men were far more beautiful than women,” he says. “I had no idea what that meant and continued on in ignorant bliss for years... until I started grammar school and realised of course what it might mean and was horrified to think that I could be gay because everything I'd ever learned about being homosexual was evil and horrible.”

“In those 1950s, of course, it was criminal and associated with pedophilia and extreme femininity or fanatacism and all those horrible things. The stereotypical imagery of being gay was certainly not the reality of what people experience today. My impression was horrifying and it took me a long time to come out because I came from a fairly staunch traditional upbringing with religious convictions.

“Then when I started finding out about it, when I was out on my own and working, I had my first sexual experience which was at the not too young age of 21, but believe me, from then on you couldn't stop me.

Through his workplaces and contacts and in his adult life he started to realise what homophobia was first hand “because of the horrendous insults and jokes, etc. that I saw other people who were more openly gay were experiencing.”

The young Kilmister kept his head down. “I was very keen to promote my career and so kept very much in the closet. Until I started out in business for myself and also saw what was going to be the initial ravages of HIV/AIDS working its way down from America to Australia and on to New Zealand.”

Self-sufficient, independent, quite wealthy and with a growing network of resourceful gay friends, Kilmister was, he realised, in a fortunate position. “I felt I had to be able to do something about this so I helped my good friend Alan Ivory get the NZ AIDS Foundation established.” Once the NZAF was up and running he heeded the call of other gay activists to get law reform organised working here, to stop gay men hiding from the law and medical authorities, all of whom were seen as the enemy. In those days the police locked you up and the medics frequently assaulted gay men's sexuality with drugs and psychiatric brutality. “So I worked closely again with Alan and with Fran Wilde to get law reform successfully through the house.”

When the Bill finally passed, following several years of brutal public debate and vicious attacks by reilgious bigots including even the Salvation Army, Kilmister didn't sign off after a job well done. Narrow minds needed to be broadened.

“After law reform I thought we needed social reform, because that stereotypical imagery of gay people was still there so I moved from law reform into the Hero Project.” The first year or so of an event which would come to define much of the increasingly out glbti communities began as an NZAF initiative to unite gay men against HIV/AIDS, to present a positive and joyous alternative to the grim stereotypes. NZAF staffer Rex Halliday kicked the ball into touch and when Hero almost immediately became too big for the NZAF to operate and needed a life of its own Kilmister became chair of the newly formed Hero Project.

“For the next eight years we helped build hero up to be a significant name... we established the Hero parade to complement the party. And that was, I think, a turn-around for [most] New Zealanders' awareness of gay people because the association was no longer with abuse and pedophilia, it was more with dancing boys and parades and happy times.”

But HIV was still strongly with us, gay and bi men were dying in droves, with funerals up and down the country every week and shattered friends and families trying to come to terms with the seeming lack of progress towards humane official treatment and effective medical interventions. “I decided I would need to do something more about HIV so I moved from Hero across to Body Positive."

It was a rough time, funds were non-existent in the early days, "and for those first few years we were struggling to simply stay afloat with the tiny little office here at what used to be the Burnett Centre,” Kilmister remembers. It is not generally known that Kilmister, now in straightened circumstances himself as a result of changing economic times and a weakened constitution due to his own desperate fight against the ravages of HIV, often went without even the small pay packet he was receiving to manage the organisation.

He self-consciously brushes this off and instead wants to accentuate the progress, in funding and capability, which he helped Body Positive achieve. “I have helped build Body Positive over the past twenty years to now be a national body with good name recognition and a resource centre both in Auckland and in Wellington,” he acknowledges, giving credit to “a small, dedicated staff and a larger number of people who contract to us such as counsellors or therapists.”

Kilmister looks around the organisation's offices just off Auckland's Karangahape Road, still the national ground zero of the HIV epidemic and its after-effects. “I must say that I am really, really proud of what we've achieved, and I say 'we' because quite honestly I've just been fortunate enough to be at the front or the helm when the reality is the broad base of the work has been done by the board and the dedicated small team of staff that I've had the privilege to be working with.”

It's a journalistic cliché to say that Kilmister goes all misty-eyed, but that's exactly what happens now. “When I reflect on it now I can't think of it as being twenty-something years. It feels like yesterday but I look in the mirror and that assures me it's been more than twenty years. And the reality is that it's been an absolute privilege and an honour...” he swallows hard and his voice wavers... “and almost brings a tear to my eye because when I think of all those people who have been right up against the brick wall and they've had no hope and no help and they've been facing what they think are dark days.”

Kilmister self-consciously pauses a moment then continues. “That's where Body Positive has made a difference... in helping people to access medications so that they can stay alive or helping them access support through work and income, or accommodation, or just simply helping them regain their self-esteem and their pride... “ The sentence hangs in the air as he takes a deep breath.

“That's the worst thing that this virus attacks... it not only attacks the body – and we now have wonderful medications – but it also attacks the mind itself, leading to the lack of self esteem and the stigma that comes with that. And it really is so shameful that some of our community are still ignorant about HIV or still exercise discrimination against people living with HIV. I think people living with HIV are real heroes, that they've faced the reality of their health situation and they've done something about it and they've turned their lives around and have decided for the most part to get back into the the life stream and to normalise their life as much as they can. And despite overwhelming odds and often in the face of the stigma and discrimination that is associated with living with HIV.”

Kilmister knows all about coping with HIV, having been diagnosed in the early days of the epidemic “when it was a death sentence because there was no medication.”

Decades of making a difference - Pt2

Jay Bennie - 30th November 2014

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