Who Speaks for Me?
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. 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 relevent 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 relevent 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 relevent not just to one small group but to the majority. And that may be an impossible task, but it's worth pointing out.
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. 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 relevent 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 relevent 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 relevent not just to one small group but to the majority. And that may be an impossible task, but it's worth pointing out.
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