re: are we spokespeople as well as men/women living with hiv?

[poet]

A reply to my topic about dating disclosures (which came in response to another post I read) brought this question to mind: do any of us feel that we are not only men and women who are living with hiv, but men and women who are a) equally; b) officially; c) never living and acting as spokespeople for men and women who are living with hiv, which is to ask do you feel that our actions are under the microscope, subject to comment in the press?  I knew, for example, Michael Callen in NYC whose comments as dating yenta might be questioned by medical professionals.  Take the choice to not use condoms during sex?  Is it a decision between the two people involved only or does it include everyone else since such a choice could later be cited during funding rounds?  Win

[wellington]

I learned many years ago to pay attention to the agendas of others before letting down my guard. I'm all for helping my fellow human beings and society in general, a firm believer in what goes around comes around, but I know enough to skirt the puddles instead of wading through them. Spokespeople, however, represent people and I've enough trouble understanding my own wishes and feelings at times than to jump to the fore and speak for others. The english language isn't always conducive to coherent personal expression , but I make due. The price we pay for living in a social setting, I guess.

[Cliff]

Can our actions be judged by others?  Yes.  Should they be is the real question.  Our lives can be (and often are) under the watchful eye of others.  But that doesn't mean that this should dictate how we conduct our lives.  Take the example above (safer sex)...the decision is between those two individuals, (assuming we are talking about consenting adults).  Should their actions be later 'cited during funding rounds,' then folks should question why.

[poet]

Or, Cliff, take the bare backing furor which hit in NYC.  'My God, here we spend all of these dollars on medications, the Ryan White Act, healthcare... and what do these guys do: have sex without condoms; become 'bug' seekers, posting ads. that they want to be infected.'   And this hit Poz, the magazine, when a certain pharmacy owner aimed at the hiv positive population managed to infect his formerly negative partner.  Or the sex worker (male) poplulation in NYC which makes its money providing (legally, time) and the client, for God knows what reason, decides that he wants raw sex.  And in the internet age, we all have to assume that any journalist doing a story can/will come into this area and start to read the posts.  So on the one hand we are trying to, honestly, put across words which reflect our personal views and on the other hand, wonder exactly who might read our posts and what would they think.  Posted somewhere else, it might be viewed as private thoughts.  Posted here, hiv positive men and women out in public.

Please don't interpret this as a paranoid warning about what one says or doesn't say.  I am bringing up for discussion how others might feel about the public spokeman/woman aspect of posting as opposed to always reading.

[Ann]

Hi Poet,

I can only speak for myself, but I don't see myself as being a spokesperson when I post in these forums. (At least not when I'm not wearing my moderator hat - and I don't wear that hat in this side of the forum very often. Usually I'm just me, another person living with hiv over here. And even with the moderator thing, I'm being more of a spokesperson for the site, not the disease... if that makes sense?)  I wouldn't have thought any of us do - all any of us can do is speak our own truths. What is true for one of us isn't necessarily true for all of us.

I do think I see your point though and tell me if I'm wrong, but are you talking about the fact that people who are not living with hiv might come into and read these forums and decide that what any one of us says is representative of the hiv positive population as a whole? I suppose that may happen, but it is not something that is ever uppermost in my mind.

Of course, if I were to be interviewed by the media, the focus of my awareness would shift - I would feel more like a spokesperson and I think I would try to get the message across that while what I relate about my own experiences are true for me, they might not be true for every person living with hiv. I suppose in that sort of instance I would also try to concentrate on aspects of hiv that are more universal, like the need for unfettered access for all to the meds for example.

To be honest, I'm not entirely sure I understand what you're getting at and if I've read you wrong... sorry. I thought I'd have a stab at it though.

Ann

[poet]

Hi Ann.  Yes, you got it, although my reply to your post disappeared- a sign?  I would mention what has happened all to often to Sean (Strub) over a comment or article, i.e. the conversation with the late pharmacy owner with whom he had a business relationship and what comments that seemed to attract.  I remention the furor over bare-backing which certain people (reporters?, friends of reporters?) got wind of via posts on websites, a specific website and chatroom conversations.  What were comments of individuals got turned into statements about 'hiv positive gay men.' 

In your case, we can perhaps imagine a situation in which you do comment on behalf of poz.com or whatever and yet that comment loses its connection and all that gets picked up is the comment. 

So we, too, make the internet personal by posting our personal comments based, perhaps, on our personal experiences.  All great as long as the context is carried over as personal comments and not the comments of hiv positive men and women in general.

[Oceanbeach]

Good Evening,

I consider myself a Spokes Person for the 700 people in care, living in our county and the 1200 -1300 estimated people living with HIV who are not in care.  I wrote and market www.Commission-on-AIDS.org for the 55,700 people living with HIV/AIDS in California and work dilligently in every aspect involved in the RWCA reauthorization.  I pay for the site myself because there is no funding available for what I do.

I am the Public Relations/Press Contact volunteer for the Sonoma County Commission on AIDS and through this am in contact with about 45 newspapers and radio stations in a 3 county area.  I disclosed my status to the press because it gives me credibility.  As stated by the publisher of one of the papers, when they get a press release from a county employee, it is viewed as prepared and predictable.  It is an honor for me to be able to do this volunteer work and it keeps my skills sharp.

Earlier this year, I was the Spokes Model for the first Community Reconnect Task Force and will continue as their keynote speaker in future events.

However, my time here in the forums is more personal to me.  I do not see myself as a representative of people living with HIV/AIDS for a casual visitor of this site.  Like most, I am either looking for support or offering suport to another person.

I did run a Google search of my website name.  The search engines found every post I have contributed to for the past year.  Have the best day
Michael
 

[DanielMark]

Interesting question Win,

"... do any of us feel that we are not only men and women who are living with hiv, but men and women who are a) equally; b) officially; c) never living and acting as spokespeople for men and women who are living with hiv, which is to ask do you feel that our actions are under the microscope, subject to comment in the press?"

I have to say I don't put much weight on other people's opinions – not in my personal life and certainly not in the media. I only ever speak for me. If anyone one else wants to warp that into a generalisation, well that's their choice. Opinions are like butt holes – everybody’s got one.

I am not and never will be a poster boy for HIV, nor one for all Gay men. I am person FIRST, living with a medical condition due to HIV infection, and I'm also Gay. In that order.

My two nickels.

Daniel

[Cliff]

Poet,

I think I understand what you are getting at (and it's a good topic).  While I agree that people, (the media in particular), can misuse our words, I still don't think that should result in us having to alter our discussions (whether in the forums or elsewhere).  I think you have to confront the misusage of our dialogue when it happens (if warranted).

[allopathicholistic]

Take the choice to not use condoms during sex?  Is it a decision between the two people involved only or does it include everyone else since such a choice could later be cited during funding rounds? 

oh goodness... ... i don't know about all that, but when i'm asked about HIV or AIDS by a HIV-negative person i do go into educator/spokesman mode especially if talking to heterosexual people. i always begin any schpiel with "Well as far as *I* know, blah blah blah" and end with "I am *not* an HIV expert. Not even close."