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The Gay Blade

20th April 2010

Who Speaks for Me?

Posted by: Michael Stevens

I was interested to read this article on gaynz about the magazine “Collective Thinking” and how Body Positive (BP) and others view it and where it should be.

Now, let me declare my potential conflicts of interest up front: I have written for the magazine a number of times. I have close links to NZAF as an ex-Chair of the organisation. I have also served my time on the Board of Body Positive back in the 90s, and I have helped run a number of support groups for BP over the years, I think I co-facilitated five of them in the end, as a volunteer. I also carry out research at University into life with HIV for gay men in New Zealand.

So I’m sort of in the thick of it to some extent.

Do HIV+ people in New Zealand need some sort of magazine or forum where they can connect or at least feel as though they matter? Yes, definitely, and like Ray Taylor I’m a fan of the idea of turning it into an online resource.

Is BP the right group to be running this? Well, personally, I don’t think so. So I’m glad they’ve decided not to try.

They like to claim that they are the national organisation for those of living with HIV, and that claim is typically unquestioned. But there have been bitter fights in the past between BP and people trying to set up HIV support networks in other parts of the country. Yes, I’m airing some dirty laundry that none of the gay media have ever picked up.

We don’t all get on. We don’t all agree. Just because we have HIV doesn’t automatically mean we form a community.

A lot of the resentment from people out of Auckland in the past came from people thinking BP was doing a typical Auckland take-over, trying to take ownership of their groups yet being blind to the needs of local people, or even HIV+ people in those places who do not think BP does such a great job in the first place. In many ways the relationship has a strange echo of how BP complains about the NZAF. To be blunt, not everyone living with HIV respects and listens to Body Positive, yet they get to claim they are our voice.

They do in fact do a lot of good things under difficult circumstances, but their main problem is one outside their control. More and more people who get diagnosed with HIV find that after the first shock, which may last months, or years for some, they don’t actually want to be in a group of HIV+ people. Simply having the same virus in your body as someone else doesn’t create a single coherent group of people. And today more and more of us are getting on with life, and actually have no need of the services they provide.

BP was set up in a time of crisis, when people were getting horribly sick and dying. When I went to my support group  there one of the facilitators died 3 weeks into our 12 week session. It was 1994, and it was a different world. In those days there was a clear and obvious need for peer support groups, in those days you knew you would get sick, and need help, and die from AIDS. I spent 3 years focussing on my impending death, was sure I’d never be able to have a meaningful career again or form loving relationships. Well thanks to the power of western Medicine, I got all that completely wrong, I’m glad to say. But in that time it did feel important to be with others who understood, who were going through it as well. But that was a different time.

HIV+ people in New Zealand do need strong advocacy, especially around maintaining access to the best quality medication, and in dealing with bigotry, isolation and stigma. And for some people, an HIV diagnosis is still something that overwhelms everything else in their lives and changes it in such a way that they find returning to “normal” life impossible. All of these things are important, and BP does what it can in these areas.

But lots of us aren’t in that situation. Frankly, and I say this without malice, BP is not relevant to me as an HIV+ gay man today, and I know a lot of other guys in the same position. As we actually have a very small pool of people living with the virus here, it become even harder for them to stay relevant to people who are getting on with their lives.

We do need some sort of national organisation for all HIV+ people, but every time it has been attempted, it has collapsed at the first hurdle due to personality clashes and differing ideas of what it should be. BP ends up as the voice, but they aren’t my voice, they don’t speak for me, and I know an awful lot of HIV+ guys around New Zealand who are in the same position.

What’s the solution? I’m not sure. But we need to adapt to a very different world and a very different population of people living with the virus. BP, or any other group that claims it can speak for people with HIV needs to ensure they are relevant not just to one small group but to the majority. And that may be an impossible task, but it’s worth pointing out.

Tags: General

11 responses so far ↓

  • 1 David // Apr 21, 2010 at 11:42 pm

    The same thing can said of the NZAF, which is why it’s appropriate that the spell checker often suggests nazi.

    No group or organisation will ever be the voice of of the people, don’t waste you energy looking for it. A majority is not 51%.

    I’m happy for the the NZAF to hold on to Collective Thinking, but it’s suppose to be an independent publication. Currently it riddled with NZAF propaganda.

  • 2 355 // Apr 22, 2010 at 2:44 am

    As a casual observer, it seems that NZAF and BP are basically at war - with individuals lining up behind one organization or the other. Michael has declared his support for NZAF here and that’s fine but I think he is in a decreasing minority [supporters of the group]. Frankly, NZAF has burnt its bridges with so many [diverse] groups in the community that one wonders exactly who it speaks for anymore - when it does speak. It’s distressing to see what could be a great progression, moving the publication to an online space, being so plagued with conflict at this early stage. But that’s what you get in war i guess.

  • 3 nzpozguy // Apr 24, 2010 at 1:28 pm

    I LOL when i read this biased crap

    but then since you defend NZAF-I really wasnt surprised @ the crap you wrote

    You are not writing for the hiv+ people who have been treated like shit by this organisation.

    People wonder why hiv+ people dont go near the NZAF its because of exactly this crap

    NZAF havent contacted all peer groups.I run one in Palmey which HAS NOTHING to do with any hiv support groups and we are doing well.

    We meet weekly and talk about any problems we are having and offer support to EACH OTHER and guess what Michael??

    IT WORKS

  • 4 Glenn // Apr 25, 2010 at 11:02 am

    The response from nzpozguy is typical of the issue that M has raised in this blog. The statement ” but since you defend NZAF” is hard to fathom, as other than the reference to ” a strange echo of how BP complains about NZAF” and declaring his involvement with both organisations, I can find no reference to NZAF, let alone a defence!! Sad to say, most of us cant be bothered with the politics ( and egos!!) attached to groups involved with HIV in NZ so tend to get on with life instead, while recognising that some fantastic advocacy work is done behind the scenes that means that living with HIV is no longer the death sentence it once was.
    I just hope that pozguy’s principals, in light of the fact that he considers that “hiv+ people () have been treated like shit ” by NZAF dont allow him to take advantage of anything they have achieved, eg lobbying the health ministry to provide many HIV+ people with ( approximately ) $30k worth of health care and medication per annum. Surely it’s easier to be grateful for what is achieved, rather than bitch about what is not done.

  • 5 Mark Anthony // Apr 26, 2010 at 2:56 pm

    There is a sense in which NZPozguy is right, in the past Mr Stevens’ loyalty to NZAF has been like a tattoo emblazoned across his chest. Interestingly in this blog, he refers only to Body Positive in the negative? Any particular reason, I wonder?

    He writes:

    To be blunt, not everyone living with HIV respects and listens to Body Positive, yet they get to claim they are our voice.

    Personally I could happily replace BP with NZAF, or write of both in the same vein. Neither organisation represents my interests, nor the interests of a number of positive people, it would seem.

    Stevens continues:

    And today more and more of us are getting on with life, and actually have no need of the services they(BP) provide.

    Again, I could ask, do we have need of the services the NZAF provides? Are the issues Michael Stevens raises not the same with both organisations?

    HIV+ people in New Zealand do need strong advocacy, especially around maintaining access to the best quality medication, and in dealing with bigotry, isolation and stigma. And for some people, an HIV diagnosis is still something that overwhelms everything else in their lives and changes it in such a way that they find returning to “normal” life impossible. All of these things are important, and BP does what it can in these areas.

    I agree with Mr Stevens that there does need to be a reassessment of the type and nature of the organisation/s that represent positive people. I have argued the uselessness of the current arrangement in the past. Contrary to what others might think, I regard NZAF as an extravagant waste. Does Glenn really think that the treatment HIV+ people currently receive is solely because of the efforts of the NZAF? Such a notion is naive in the extreme. The monies that NZAF receives annually could be distributed among the DHBs which currently are under-represented, and under-funded. I know from personal experience that Auckland Hospital provides first class treatment for HIV and ongoing assistance from the team of nursing specialists, psychiatrists and social workers, and I dare say in Wellington and Christchurch, the same could be said. So why, in the ‘post-war’ phase of the fight against AIDS do we continue to allow valuable resources to be wasted on politicking careerists in centres that are amply provided for already, while other regions across the country have no access to any real kind of clinical assistance?

    Any future organisation must be truly representative, by that, I mean it has to speak for the rural positive people as well as the urban positive people of this country.

    A common theme in the content of Stevens’ writings about living with HIV seems to be that those diagnosed in the first and second waves of the crisis, that is to say in the last 10 to 20 years, and who survived, have a uniquely different experience of HIV compared to those of us who have recently been diagnosed, and we are expected to reach the same mental and emotional state as those who are currently in their second decade of living with HIV without the benefit of the organisations established to provide support for those in the preliminary phases of the struggle. This baffles me.

    Like it or not, each year we have a new pool of the newly infected for whom Body Positive and the AIDS Foundation is relevant. The newly infected young people (under 30 years) it would seem (if the information relating to the Mills case is correct), prefer to approach Body Positive to NZAF. Why? I suspect it is for a variety of reasons. Speaking personally, though, the use of the term ‘AIDS’ in the nomenclature of the organisation is the most off-putting, if not frightening barrier. The name New Zealand AIDS Foundation sounds cold and uninviting, and speaking personally, that is exactly how the organisation was to me four years when I was diagnosed. The very name of the organisation is an obstacle, because while people do indeed develop AIDS, they no longer do at the same rate, as twenty years ago. ( If I am not mistaken, one person was identified as having AIDS last year, while in the same period there was an increase in HIV infections, adding to the pool, that Stevens suggests is diminishing.)
    In truth, The NZAF sounds more like a NZ government sponsored organisation to help raise awareness of, and to help fight, AIDS in the developing world, than an organisation to assist newly infected HIV+ persons, here in New Zealand. I guess what I am getting at here, is that the organisation needs to adapt to become relevant to a new generation of HIV+ infected persons, in an age of available medications designed to make the quality of life bearable. (Changing its’ name would help considerably.) Body Positive, like it not, has a better grasp of this, but lacks the funding to allow it to develop as a viable organisation.

    One could of course waste an enormous amount of time writing apologia in defence of either NZAF or Body Positive, but frankly it would be a fruitless exercise. Both organisations have their supporters, and yet both seem to have failed to adapt. Mr Stevens writes of Body Positive as being ‘not relevant to me as an HIV+ gay man today’ and his reason for this it, would seem, is because he is getting on with his life. Good for you Michael, but others’ unfortunately are not getting on with their lives, particularly the newly diagnosed, and they need as much support as you had access to, when you were first diagnosed. It would seem, that this ‘small pool’ is actually getting larger and yet there is neither the interest nor the will among the existing organisations to accommodate this trend.

  • 6 Glenn // Apr 26, 2010 at 4:57 pm

    Just to be totally clear, before I begin, let me state that I have never had any contact with either PB or NZAF,( apart from a single visit to the Burnett Centre for an HIV test.), so have no axe to grind with either organisation.

    Gosh, what amazing results selective reading creates. If Mark Anthony likes to wipe his ( possibly ) fogged up glasses he will see that I actually suggested that NZAF lobbied for better health care for HIV+ people, not that they were the sole organisation responsible for achieving it. He also appears to have read into Ms blog various items that, for the life of me , I cant find.

    I guess that stressing out about the name of an organisation says alot about where someone positions themself on the ” positive ( no pun intended) outlook on life ” barometer.
    I must admit to being somewhat baffled as to how an organisation that bears the name “New Zealand Aids Foundation” could be percieved as being predominantly targeted at ” raise(ing) awareness of, and to help fight, AIDS in the developing world ” By the same logic the New Zealand Olympic Team would be attempting to win medals for third world countries…….hardly likely me thinks.!!
    At least we can agree that the team at Infectious Diseases at Auckland Hospital are superb :-)

  • 7 Mark Anthony // Apr 26, 2010 at 9:55 pm

    I am guessing that Glenn is not positive. If he was he might understand better the problems that positive people face. But not being positive, why would he even bother to try to understand?

    It is not simply a question of whether one favours one exisiting ‘HIV/AIDS’ organisation rather than another, but whether there is any organisation in this bloody country that actually cares enough about positive people to provide ongoing support for them.

  • 8 Glenn // Apr 27, 2010 at 1:38 am

    Wrong again Mark Anthony ( you seem to make a habit of putting foot in mouth ), I am indeed HIV positive but am a firm believer that by taking a positive ( again , no pun intended) approach to all matters in life , rather than wallowing in the negatives, there is no reason for my health status to marginalise my existance. Why would I expect someone else to be responsible for supporting me. I work, I socialise, I take holidays, I enjoy the company of friends and family…….in other words, I just get on with life……oh and I take my meds as well.( thank god I live in “this bloody country ” where there are organisations who have ensured that medications are available ) Guess it comes down to the old saying about the level of the liquid in the glass;-)

  • 9 Mark Anthony // Apr 27, 2010 at 9:51 am

    Thanks for sharing that Glenn. Good to know that you are doing well, good to hear too that you have family and friends around you to provide support.

    No one, least of all myself, is talking of one’s health status ‘marginalising’ one’s existence (whatever that means?).

    Many don’t quite have that luxury of family and friendship that makes your life comfortable and thankfully, many more don’t subscribe to the ‘I’m alright Jack’ school of clinical psychology.

  • 10 355 // Apr 28, 2010 at 5:12 am

    MA writes:
    “A common theme in the content of Stevens’ writings about living with HIV seems to be that those diagnosed in the first and second waves of the crisis, that is to say in the last 10 to 20 years, and who survived, have a uniquely different experience of HIV compared to those of us who have recently been diagnosed, and we are expected to reach the same mental and emotional state as those who are currently in their second decade of living with HIV without the benefit of the organisations established to provide support for those in the preliminary phases of the struggle. This baffles me.”
    This is a quite excellent analysis of Stevens’ writing and I too was baffled by his framing of diagnosis of infection at first. After reading more of his work I see the way he uses this positioning to place himself in a role of blameless authority when dictating to younger men who have sex with men about their sex acts [and how they should remain ’safe’]. This may come from a good place [I’m sure Stevens’ is desirous of seeing fewer men infected with hiv] however it frequently obscures the reality of sexual experience and denies his own role as a seropositive for hire - see his upcoming role as ‘researcher’ at the HIV update meeting. Again, in order to understand the current [parlous] state of affairs when it comes to hiv support in NZ, it is important to recognize the part that figures such as Stevens have to play in this environment.

  • 11 nzpozguy // May 7, 2010 at 9:17 am

    Michael may well say Body Positive does not speak for him but we do speak for our membership which is now close to 500 HIV+ people. Michael speaks for himself.

    and that is how it is
    oh and btw please refrain from emailing me Michael taking the stance that I said this and i said that .

    Your blog as normal is one sided

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