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Saturday 10 October 2015

Body Positive: Taking the Long View

Posted in: HIV
By Michael Stevens - 6th October 2015

Ructions at Body Positive and unhappy members. Where have I seen this before?


Before we go on, let me be upfront that I do know some of the people involved on all sides of this: that’s NZ’s HIV world for you. And if I’ve got any dates wrong, please let me know – but be forgiving, I’m painting in broad brushstrokes here.

My first contact with BP was back in 1993, and I was a member of the Board for 1994 – 95. Mike Butters was the first Executive Director of BP, and if my memory serves me right, he was the first person to have a paid position with the organisation. That in itself pissed off some members, who thought any work done should be voluntary and any money we had be used on supporting people living with AIDS.

Of course it was a very different era. We didn’t really talk about HIV then, it was AIDS, as everyone was getting sick and dying of AIDS. I attended a 12-on-12 support group (twelve HIV+ people meeting for twelve weeks) and one of the facilitators died in the third week.

But being on the Board at that time, I do remember the issues of it being “too Auckland” and the Board not listening to members as issues that arose. And these issues often arose from people who were desperately sick, getting ready to die, angry and confused and ready to lash out, and also with no real understanding of the financial limits of the organisation.

Even though Mike was paid, we only had funding from local charities – no government support, and BP’s office was based in one of the buildings at Auckland Hospital with the Burnett Centre: we basically had one room out of the Burnett Centre.

In short – we never had the money to do what we’d like to do.

I do know for a fact that there was an attempt in 1994 to set up a Wellington branch, but it didn’t work because there wasn’t enough interest shown from HIV+ people there to run it as a voluntary concern. There was also an attempt to set up a group for straight men alienated by the gayness of BP – the “Straight Arrows” I think they were called. It didn’t last.

Mike Butters left and went to Sydney where he died of AIDS in 1997 if my memory serves me right. He was the loveliest, sweetest guy, and his hard work in getting BP established at a more professional level at that time deserves to be honoured. He worked in a much more hostile world for people with HIV than today and it saddens me to see how he has been written out of the BP story by others. He really was a hero.

After Mike, Grant Hall became ED for a while, and without wanting to speak ill of the dead, let’s say he wasn’t really cut out for the role. Others can correct me if I’ve got my details wrong here, but he wasn’t paid as he wasn’t able to manage the funding applications needed to keep it all going. There was no Ministry of Health funding as there is today.

Next Keith Marshall came along as a volunteer ED with Jack Dragicevich and they both stepped in to try and clean up the mess as best they could. At the time I wondered if it wasn’t better to let the organisation fold, as there was so little interest from members in actually doing anything. A lot of people wanted BP to do everything for them, but very few seemed willing to actually put their hands up themselves.

In the early 2000s there was a lot of pressure coming again from HIV people that BP was too Auckland-centric, but this was coming from Christchurch, not Wellington, and there were attempts to set up an independent Christchurch HIV+ peer support group.

After Keith Left, Jack stayed on as Bruce Kilmister came into the ED role, which he was able to turn into a fully paid position again.

All three main HIV support groups, Body Positive, Positive Women, and INA benefitted from the expert work done by Warren Lindberg in finally gaining some Ministry of Health funding, but even that is minimal.

For me personally now, Body Positive is irrelevant. I have no need for it, and that is the case for most HIV+ gay men in New Zealand I suspect. Even though they claim 800 or so members, hardly any are active. Over the last few years when friends have told me they have sero-converted I have suggested they join BP and each time had a very clear “No, not for me”. One mate a few years back reeled back in horror and said “Oh God no I don’t want to sit around going ‘Boo hoo I’ve got HIV’”

Many people with HIV today are living completely normal lives and do not see the need for BP in their lives. They aren’t sick, they haven’t lost their jobs, they’ve dealt with the initial trauma of the diagnosis, and they keep going with their lives. Yes, they are the fortunate ones. For others an HIV diagnosis upends their lives entirely and they have high social needs – but BP isn’t resourced in money or staff to really deal with them.

If significant numbers of HIV+ men are going “it’s nice you’re there but I have no need for you” it calls into question their reason for existence.

Personally I’d love to see BP grow more and be able to do more – but as ever it comes down to money.

For the entire time I have known it, BP has been chronically under-funded for the work it has tried to do. Over the last few years it has tried to do more, with free testing, and setting up the Wellington office, as well as catering for some very highly dependent people.

Again and again over the last 20 and more years it has been the same story as BP tries to find a way to work for its members, to deliver basic services, to be there.

It would be good to know just how all the funds it has received over the last five years or so have been spent, and a full audit of the organisation would help give everyone a clear and realistic picture of what has been done and what can be done now. In fact I think that’s essential if we are going to have a rational discussion about what BP is going to be in the future and I call on the Board to do this. It will clear up issues and show us all just what can and can’t be done with the funding available.

What I have see again and again is a pattern of a volunteer Board giving up their time, regularly facing criticism they don’t relate to members and they focus too much on Auckland.

And it all comes back down to money. BP needs to be funded properly, and we should make this a political issue. We should protest and engage with politicians to get funding for the organisation.

Otherwise there will be another band-aid for a few years and another crisis will arise. The pattern will continue.

Michael Stevens - 6th October 2015

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