Quantcast

Subscribe to:
POZ magazine
Newsletters
Join POZ: Facebook MySpace Twitter Pinterest
Tumblr Google+ Flickr Instagram
POZ Personals
Sign In / Join
Username:
Password:
Welcome, Guest. Please login or register.
December 27, 2014, 03:55:47 PM

Login with username, password and session length


Members
Stats
  • Total Posts: 650553
  • Total Topics: 49673
  • Online Today: 195
  • Online Ever: 585
  • (January 07, 2014, 02:31:47 PM)
Users Online

Welcome


Welcome to the POZ/AIDSmeds Community Forums, a round-the-clock discussion area for people with HIV/AIDS, their friends/family/caregivers, and others concerned about HIV/AIDS.  Click on the links below to browse our various forums; scroll down for a glance at the most recent posts; or join in the conversation yourself by registering on the left side of this page.

Privacy Warning:  Please realize that these forums are open to all, and are fully searchable via Google and other search engines. If you are HIV positive and disclose this in our forums, then it is almost the same thing as telling the whole world (or at least the World Wide Web). If this concerns you, then do not use a username or avatar that are self-identifying in any way. We do not allow the deletion of anything you post in these forums, so think before you post.

  • The information shared in these forums, by moderators and members, is designed to complement, not replace, the relationship between an individual and his/her own physician.

  • All members of these forums are, by default, not considered to be licensed medical providers. If otherwise, users must clearly define themselves as such.

  • Forums members must behave at all times with respect and honesty. Posting guidelines, including time-out and banning policies, have been established by the moderators of these forums. Click here for “Am I Infected?” posting guidelines. Click here for posting guidelines pertaining to all other POZ/AIDSmeds community forums.

  • We ask all forums members to provide references for health/medical/scientific information they provide, when it is not a personal experience being discussed. Please provide hyperlinks with full URLs or full citations of published works not available via the Internet. Additionally, all forums members must post information which are true and correct to their knowledge.

  • Product advertisement—including links; banners; editorial content; and clinical trial, study or survey participation—is strictly prohibited by forums members unless permission has been secured from POZ.

To change forums navigation language settings, click here (members only), Register now

Para cambiar sus preferencias de los foros en español, haz clic aquí (sólo miembros), Regístrate ahora

Finished Reading This? You can collapse this or any other box on this page by clicking the symbol in each box.

Author Topic: The POZ Army  (Read 8573 times)

0 Members and 1 Guest are viewing this topic.

Offline Peter Staley

  • Member
  • Posts: 1,337
  • Founder & Advisory Editor, AIDSmeds.com
    • AIDSmeds.com
The POZ Army
« on: March 23, 2009, 03:57:28 PM »
Please read my latest blog posting...

I must admit, I've become deeply cynical about people with AIDS. I hate that I feel this way. The community I've always felt a part of - Americans living with HIV - has, in my mind, become impotent. Stigma seems to rule us, and we now find it easier to compartmentalize or hide this significant health challenge we all face.

Maybe it's not cynicism I'm feeling, as much as a deep sense of loss. I mourn the days when we were bound by anger and willing to fight together for our dignity and our place in the world. We used to suffer far more external stigma than we do today, but it only made us angrier and stronger. We'd yell out to all who would listen and to those who tried not the listen, "WE ARE PEOPLE LIVING WITH AIDS."


Read the rest here:
http://blogs.poz.com/peter/archives/2009/03/the_poz_army.html

If you have any questions about the project I mention in the post, feel free to ask them here or in my blog -- I'll try to answer any and all questions.

Thanks for reading!

Peter


Offline David_CA

  • Member
  • Posts: 3,246
  • Joined: March 2006
Re: The POZ Army
« Reply #1 on: March 23, 2009, 04:38:05 PM »
Peter,

I don't think it's only people living with HIV/AIDS.  The only folks I've found to be concerned with the two bills - one in the House and one in the Senate - in NC introducing Defense of Marriage legislation are a few straight friends of mine, my husband, and me.  I'm not saying that no others are concerned, but, with all the Prop. 8 protests nationwide last fall, I expected to see or hear something...anything here at home. 

Perhaps so many of us with HIV/AIDS are living now, planning for longer lives with futures, and don't feel the pressure as in the past, which is a good thing.  I think it's safe to say that many of us more recently infected or younger will never see the horrors of the early days of the AIDS epidemic (at least here in the US), which I'm sure was a huge motivator.  That's also a good thing.  For us to become complacent, though, wound not be a good thing.

Hearing some of my older gay friends talk about their coming-out period, many of them in the '70's and '80's, sometimes makes me feel like something's missing.  As much as many of us want to be accepted, we also embrace our differences.  We don't want to blend in, but we don't really want to stand out.  Sometimes, I feel like I'm missing something... a sense of community fighting for a common cause - gay rights, HIV/AIDS, etc.  Maybe it's that I want to feel that I have made a difference somehow.  Perhaps much of that anger you, and many others, experienced in the early days has turned into more positive energy.  Maybe that same energy is now being shown through things like starting AidsMeds that help so many of us.

Black Friday 03-03-2006
03-23-06 CD4 359 @27.4% VL 75,938
06-01-06 CD4 462 @24.3% VL > 100,000
08-15-06 CD4 388 @22.8% VL >  "
10-21-06 CD4 285 @21.9% VL >  "
  Atripla started 12-01-2006
01-08-07 CD4 429 @26.8% VL 1872!
05-08-07 CD4 478 @28.1% VL 740
08-03-07 CD4 509 @31.8% VL 370
11-06-07 CD4 570 @30.0% VL 140
02-21-08 CD4 648 @32.4% VL 600
05-19-08 CD4 695 @33.1% VL < 48 undetectable!
08-21-08 CD4 725 @34.5%
11-11-08 CD4 672 @39.5%
02-11-09 CD4 773 @36.8%
05-11-09 CD4 615 @36.2%
08-19-09 CD4 770 @38.5%
11-19-09 CD4 944 @33.7%
02-17-10 CD4 678 @39.9%  
06-03-10 CD4 768 @34.9%
09-21-10 CD4 685 @40.3%
01-10-11 CD4 908 @36.3%
05-23-11 CD4 846 @36.8% VL 80
02-13-12 CD4 911 @41.4% VL<20
You must be the change you want to see in the world.  Mahatma Gandhi

Offline newt

  • Member
  • Posts: 3,887
  • the one and original newt
Re: The POZ Army
« Reply #2 on: March 23, 2009, 05:33:49 PM »
The removal of imminent death (for many) thanks to meds cancelled a great deal of motivation to be permanently angry, plus deflated the twin sails of sympathy and public disclosure previously spread wide by the winds of visible illness. In short, meds returned the possibility of life, doing things, loving, dancing, being slack -- normality (of a sort). Hence the quiet army living day in day out, atomised. Plus activism moved to the after-work statistics class and reading study reports at midnight, which took the fight off the streets and into the boardroom -- not so noisy, not so amenable to the  anchor of solidarity.

matt ("So say we all, and gimme a slug of your whiskey XO") the newt
"The object is to be a well patient, not a good patient"

Offline John2038

  • Member
  • Posts: 1,529
  • Happiness is a journey, not a destination.
    • HIV Research News (Twitter)
Re: The POZ Army
« Reply #3 on: March 23, 2009, 06:03:29 PM »
I took a look to the blog, and I was sure it was about the Denver Project.
And it is.

Maybe last month I have visit the Denver Project Website

http://www.napwa.org/denverprinciplesproject/denver-principles.shtml


I don't feel attracted by this project.

Why ?

For exemple this part:

RIGHTS OF PEOPLE WITH AIDS
1. To live as full and satisfying sexual and emotional lives as anyone else.
5. To die--and to LIVE--in dignity.


What means the point 1 ?
Can the Denver principle allow me to "To live as full and satisfying sexual and emotional lives as anyone else." ???


About the point 5.
Will the Denver Project change anything to the way I am living or I will die ?

I am living in dignity as I am not disclosing to everyone as long as I am not exposing them.
Those to who I disclose are either healthcare provider or family members.
And they all treat me with dignity. Because I choose them.

Maybe I have understand nothing to these Denver Principle.
I don't know.

EDIT
I understand these principles have been written in 1983..
But definitely a communication/marketing effort need to be done around this project in order to attract people.
« Last Edit: March 23, 2009, 06:32:44 PM by John2038 »

Offline bocker3

  • Member
  • Posts: 3,459
  • You gotta enjoy life......
Re: The POZ Army
« Reply #4 on: March 23, 2009, 06:50:32 PM »
Cynical about people with AIDS...  Why?  Because they don't think or act like you think they should?

I'm a bit confused by this blog entry, quite frankly.  You are someone who I've always felt truly embraces and encourages diversity, however this entry seems to be the opposite of that.  You seem to be implying that there is one way to live with HIV and the "wrong ways".

I mean, I get your basic premise and can understand your desire for folks to be more involved.  What you don't seem to be getting is that things are a bit different today -- we are, for most (in the US, at any rate) able to live a life that encompasses much.  I work 50-60 hrs a week, have a partner to stay connected with and also do my best to stay involved with my daughter, grandkids and the rest of family (who all know my HIV status, btw).  Throw in some time to travel, play tennis and read (things that I have great passion for) and my life is pretty darn full. 

Some of us are probably far more open about our health than others, but guess what -- that isn't unique to HIV/AIDS.  Personally, I try to avoid anger in my life -- and am certainly not apt to join any movement where it is a central tenet.

Don't get me wrong -- I have tremendous respect to all those who helped get people to see and care about the epidemic that was wiping out a generation.  It is through their sacrifice that I am able to take medications that allow me to live such a full life.  I'm not afraid to or opposed to get involved, but I can't be what you seem to expect -- any angry activist who is defined by a virus.

I hope that I misunderstood you......

Mike
Atripla - Started 12/05
Reyataz/Norvir - Added 6/06
Labs - Pre-Meds
Sep05 T=350/25% VL98,559
Nov05 288/18%  47,564
Current Labs
May2013 691/31% <20

Offline Peter Staley

  • Member
  • Posts: 1,337
  • Founder & Advisory Editor, AIDSmeds.com
    • AIDSmeds.com
Re: The POZ Army
« Reply #5 on: March 23, 2009, 07:04:54 PM »
Mike -- while anger certainly was a primary motivating factor in the 80's, I should have been clearer in my blog that I don't think it's required as an organizing principle today.  That's why I mentioned the creation of a movement that was like a "MoveOn.org of people living with HIV."  Certainly, MoveOn isn't anything like ACT UP, but that doesn't mean it's any less effective.

What makes me cynical is that I'm not sure poz folks are even willing to organize IN ANY WAY.  Most live in deep closets -- I'm glad you don't!!

I'm just hoping we can regain some of our past political power with a renewed sense of community and willingness to take collective action.  Anger isn't required (but in my book, it comes in handy at times).

Cheers,

Peter

Offline Tim Horn

  • Member
  • Posts: 799
Re: The POZ Army
« Reply #6 on: March 23, 2009, 07:53:29 PM »
Perhaps much of that anger you, and many others, experienced in the early days has turned into more positive energy.  Maybe that same energy is now being shown through things like starting AidsMeds that help so many of us.

I think this is an excellent point. While the Denver Principles Project truly is everything Peter spells it out to be, it's not all about bringing history to the forfront, nor is it only a "call to action," if you will, to fight stigma, complacency and impotence. Fact is, services for people living with HIV in this country -- including educational services, like this very site -- is incredibly fragmented and are not necessarily providing HIV-positive people with what they need. People in need of treatment... or mental health services... or drug dependency counseling... or housing... or legal aid... or financial assistance... are very much falling through the cracks in this country.

While we know this, we don't have a nationwide capacity to capture the real-world experiences and needs of people living with HIV. And while policy advocates, treatment activists and health care educators often have their ears to the ground when developing programs, fact of the matter is that they often do so without knowing for certain what the needs of the community are, what's missing, what's working and what's not. In essence, a component of the Denver Principles Project is to develop a massive membership base of people living with HIV to take part in confidential local, regional and national surveys to be analyzed -- with aggregate data free of any identifying information whatsoever -- to help groups like NAPWA and other policy groups take a lead on advocacy efforts; AIDSmeds and POZ figure out whether or not its educational efforts are effective and, if not, what's needed; and AIDS service organizations and other service providers to learn more about the day-to-day realities of their constituents.

Another key issue: There's so much we want to be able to do with AIDSmeds -- beyond everything that we have now, I very much want us to start providing lower literacy education that can be found online and distributed by AIDS service organizations to clients. I also want to see us working more closely with service providers -- including ASOs and health care providers -- to provide education that reflects the real experiences, struggles, successes and coping strategies of people living with HIV. And if AIDSmeds and POZ really are the integral, life-saving sites countless people living with HIV say that it is, we want to put their content back into the hands of the true stakeholders here. In other words, the $35 membership fee (for indivuals; $100 for organizatons) -- or a request for sponsorship -- is more than just becoming a part of DPP, it's also about keeping groups like AIDSmeds, POZ and NAPWA alive and thriving, while also enabling us to diversify our funding stream. 

Tim Horn

« Last Edit: March 23, 2009, 08:02:39 PM by Tim Horn »

Offline Assurbanipal

  • Member
  • Posts: 2,173
  • Taking a forums break, still see PM's
Re: The POZ Army
« Reply #7 on: March 23, 2009, 10:12:32 PM »
There's inconsistencies between the Denver Principles Project as described in Peter's blog and as described in the welcome page you get when you clii ck on the link from this site.  I read through the Denver Principles page when the link first went up, and found it unattractive.  Peter's description was so different that I went back and reread it.  Here's the differences that struck me.

Some are of tone:
Peter describes an inclusive organization focused on understanding the needs of those who are living with HIV through participation in polls etc.  There's some top down, "enlist in our army" language, but it is explained in the context of MoveOn and similar groups which are inclusive.

The website describes that as the history of the organization and then proceeds to take a different much more top down approach for the future.  The project "will recommit the community" -- That's not the same as the community recommitting itself.  "With a vastly increased membership, NAPWA will be better able to advocate ..."  That's not really the same as the community being able to better advocate using NAPWA.  Perhaps the intent was the latter, but what comes through on the Denver Principles website is an attitude of "We are your leaders so sign up already dammit"

Others appear to be direct contradictions:
The website then ends with a message that your name will be used to directly advocate policies.  "The names of all individuals, organizations and companies who show their support for the Denver Principles Project by March 15 will be published in POZ Magazine's special 15th anniversary May issue. This issue will be hand-delivered to members of Congress and the Obama administration during AIDS Watch on Capitol Hill on April 27-29 " 

Peter's blog says " This isn't about telling the world you're HIV positive - the NAPWA membership list will never be disclosed or sold"

The initiative described in Peter's blog sounds worthwhile -- I'd join.  But I'm not signing up for what is described in the Denver Principles Project "Welcome" page and I'm certainly not interested in having my name published where it is easily accessible by an Internet search while I'm still looking for a new job.
5/06 VL 1M+, CD4 22, 5% , pneumonia, thrush -- O2 support 2 months, 6/06 +Kaletra/Truvada
9/06 VL 3959 CD4 297 13.5% 12/06 VL <400 CD4 350 15.2% +Pravachol
2007 VL<400, 70, 50 CD4 408-729 16.0% -19.7%
2008 VL UD CD4 468 - 538 16.7% - 24.6% Osteoporosis 11/08 doubled Pravachol, +Calcium/D
02/09 VL 100 CD4 616 23.7% 03/09 VL 130 5/09 VL 100 CD4 540 28.4% +Actonel (osteoporosis) 7/09 VL 130
8/09  new regimen Isentress/Epzicom 9/09 VL UD CD4 621 32.7% 11/09 VL UD CD4 607 26.4% swap Isentress for Prezista/Norvir 12/09 (liver and muscle issues) VL 50
2010 VL UD CD4 573-680 26.1% - 30.9% 12/10 VL 20
2011 VL UD-20 CD4 568-673 24.7%-30.6%
2012 VL UD swap Prezista/Norvir for Reyataz drop statin CD4 768-828 26.7%-30.7%

Offline Peter Staley

  • Member
  • Posts: 1,337
  • Founder & Advisory Editor, AIDSmeds.com
    • AIDSmeds.com
Re: The POZ Army
« Reply #8 on: March 24, 2009, 07:40:09 AM »
Assurbanipal -- no one's name is published that doesn't want their name published.  During the sign-up process, there are various options for folks to choose, including an unchecked box next to "Your name or message will appear on NAPWA.org and POZ.com" -- it's unchecked by default, and if you check it, you are given all sorts of options on how to be listed.

NAPWA and POZ have a stellar reputation of protecting the privacy of list members, and the DPP will only strengthen that reputation.  All list members who want to remain anonymous will always remain anonymous, and no one's name or contact info will ever be sold or traded to any other organization or company.  Period.  NAPWA, POZ or AIDSmeds simply couldn't function if we broke this promise of privacy.

As for your analysis of the original language of the Denver Principles, please remember their historical context.  They were written in 1983, and obviously not every word of even their general tone would read as if they were written by people living with HIV in 2009.  It's the general message of self-empowerment that the current project seeks to renew and promote.  Is that such a bad thing?

Thanks for taking the time to read my blog posting and the DPP page!

Peter

Offline AndyArrow

  • Member
  • Posts: 1,196
Re: The POZ Army
« Reply #9 on: March 24, 2009, 08:23:10 AM »
I had similar reservations when you first posted about the DPP and did not sign up at the time.  Thanks to you and Tim for taking time to clarify some issues I have signed up.

When I see what effect groups like AARP or NARP (it's a railroad thing) can have on legislation I do think it's important to have a national body like NAPWA who can claim strong membership to demand a voice.

Thanks,
AA
It is not the arrival that matters.  It is the journey along the way. -- Michel Montaigne

Offline maddalfred

  • Member
  • Posts: 128
  • Self Portrait
Re: The POZ Army
« Reply #10 on: March 24, 2009, 03:42:56 PM »
Peter,

I read the whole thing and I signed up. Frankly, I couldn't give a tinker's damn about WHO knows I'm a queer or have AIDS at this point and do not foresee giving that any power in future. I may be on the strange side in that I come out a little each day, in various ways, in various situations of my choosing.

I never did have my debutante ball or any big coming out ceremony and I think I am a little long in the tooth and fat in the gut for that kinda thing now. I fear my youthful girlish looks got away from me many moons ago. (Not sleeping well for a few years does that to a gurl.)

I am sorry my current financial condition forced me to sign up looking for a sponsor, but this is something I hope to change ASAP.

Rex
<img src=http://i269.photobucket.com/albums/jj56/maddalfred1959/Me.jpg>

Offline J.R.E.

  • Member
  • Posts: 7,288
  • Joined Dec-2003 Living positive, since 1985.
Re: The POZ Army
« Reply #11 on: March 24, 2009, 06:26:07 PM »

Throughout the years, I have become very suspicious of different organisations.  My only request, before I donate $ 35.00 is to know exactly where the money goes. Expenses, salaries ,Etc. Is an annual fiscal report available? I would be happy to donate, but these are things I need to know.


Ray
Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 25 mg of Hydrochlorothiazide.
Metoprolol tartrate 25mg



http://forums.poz.com/index.php?topic=40802.0

http://forums.poz.com/index.php?topic=45159.0

http://forums.poz.com/index.php?topic=39722.msg495621;topicseen#msg495621

http://forums.poz.com/index.php?topic=46806.0

http://forums.poz.com/index.php?topic=39414.msg491701#msg491701


Diagnosed positive in 1985,.. In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started on  HAART on October 24th, 2003.

 As of 12/10/14,  t-cells are at 350,  Previous 8/25/14--- 402/ Viral load remains <40

 Current % is at 13% / Previous 8/25/14 11%

  
 63 years young.

Offline Assurbanipal

  • Member
  • Posts: 2,173
  • Taking a forums break, still see PM's
Re: The POZ Army
« Reply #12 on: March 24, 2009, 09:01:39 PM »
Assurbanipal -- no one's name is published that doesn't want their name published.  During the sign-up process, there are various options for folks to choose, including an unchecked box next to "Your name or message will appear on NAPWA.org and POZ.com" -- it's unchecked by default, and if you check it, you are given all sorts of options on how to be listed.

NAPWA and POZ have a stellar reputation of protecting the privacy of list members, and the DPP will only strengthen that reputation.  All list members who want to remain anonymous will always remain anonymous, and no one's name or contact info will ever be sold or traded to any other organization or company.  Period.  NAPWA, POZ or AIDSmeds simply couldn't function if we broke this promise of privacy.

As for your analysis of the original language of the Denver Principles, please remember their historical context.  They were written in 1983, and obviously not every word of even their general tone would read as if they were written by people living with HIV in 2009.  It's the general message of self-empowerment that the current project seeks to renew and promote.  Is that such a bad thing?

Thanks for taking the time to read my blog posting and the DPP page!

Peter

Peter

Thanks for making that clear -- it seemed so odd that I clicked through to check the language on the join page and was still confused by it.  I think it was because the "have your name published" was in big type but the info on privacy was in very small type. (Let's not get into the reading glasses issue please  :)) 

It really helps to have this additional explanation of the intent too.

At any rate, I think I'll join now.

Throughout the years, I have become very suspicious of different organisations.  My only request, before I donate $ 35.00 is to know exactly where the money goes. Expenses, salaries ,Etc. Is an annual fiscal report available? I would be happy to donate, but these are things I need to know.
.

Ray

I look charities over before contributing too.  Were you looking for this?  http://www.napwa.org/pdf/napwa_annual_report_2008.pdf 

I also looked them up on Guidestar to see how it compared to similar non-profits. Didn't see any big red flags. Generally for the most recent year listed on Guidestar (2007) NAPWA spent over 80% on programs (82%, 1% over the median percent) and has comparable financial ratios to the larger members of its peer group.  Revenues have declined about 20% from 2005 and were stable in 2007 but declined another 20% in 2008 (2008 was not a good year for charities, though).

A
5/06 VL 1M+, CD4 22, 5% , pneumonia, thrush -- O2 support 2 months, 6/06 +Kaletra/Truvada
9/06 VL 3959 CD4 297 13.5% 12/06 VL <400 CD4 350 15.2% +Pravachol
2007 VL<400, 70, 50 CD4 408-729 16.0% -19.7%
2008 VL UD CD4 468 - 538 16.7% - 24.6% Osteoporosis 11/08 doubled Pravachol, +Calcium/D
02/09 VL 100 CD4 616 23.7% 03/09 VL 130 5/09 VL 100 CD4 540 28.4% +Actonel (osteoporosis) 7/09 VL 130
8/09  new regimen Isentress/Epzicom 9/09 VL UD CD4 621 32.7% 11/09 VL UD CD4 607 26.4% swap Isentress for Prezista/Norvir 12/09 (liver and muscle issues) VL 50
2010 VL UD CD4 573-680 26.1% - 30.9% 12/10 VL 20
2011 VL UD-20 CD4 568-673 24.7%-30.6%
2012 VL UD swap Prezista/Norvir for Reyataz drop statin CD4 768-828 26.7%-30.7%

Offline Peter Staley

  • Member
  • Posts: 1,337
  • Founder & Advisory Editor, AIDSmeds.com
    • AIDSmeds.com
Re: The POZ Army
« Reply #13 on: March 26, 2009, 09:00:57 AM »
Assurbanipal, AndyArrow, and Rex...

THANKS...

...for signing-up, and for joining the POZ army!

xoxo

Peter

P.S.  Other are encouraged to join here: http://www.napwa.org/denverprinciplesproject/

Offline pozniceguy

  • Member
  • Posts: 1,186
  • Niceguy Dallas
Re: The POZ Army
« Reply #14 on: March 26, 2009, 11:07:27 AM »
Peter   thanks for making this  more obvious and available ..I joined.....

Nick
remember the good times...honor the past but don't live there
Le stelle la notte sono grandie luminose, nel cuore profondo del Texas

Offline Peter Staley

  • Member
  • Posts: 1,337
  • Founder & Advisory Editor, AIDSmeds.com
    • AIDSmeds.com
Re: The POZ Army
« Reply #15 on: March 26, 2009, 11:23:49 AM »
Thanks, Nick -- welcome to the team!

Offline MarcoPoz

  • Member
  • Posts: 396
Re: The POZ Army
« Reply #16 on: March 26, 2009, 11:40:35 AM »
Peter,

I had my organization sign up when I first saw this in a listserve a few weeks ago.  My hope is that we can instill more "brotherhood" and an increased sense of togetherness in our advocacy efforts.  I fear that what was for me in the 'old days' a vibrant, accepting movement that advocated for everyone living with or at risk for HIV/AIDS, has grown to become a cult of personality lead, star chamber of 'accepted' leaders.  We spend far too much time picking at each other than at the disease.

I have grown so tired of going to and from D.C. on my own dime to advocate for comprehensive prevention and care while having other PWA's and representatives of PWA organizations attempt to de-legitimize my organization's efforts simply because we are from outside the beltway and do not employ paid lobbyists on our behalf.  We are simply people with AIDS who act to make change for compassionate care and comprehensive prevention.

Lets hope that bringing us back together around the Denver Principles will and cut through the crap of who is the legitimate voice of the PWA community and what is the sole legitimate message from the PWA community.  Lets hope it fosters the true collaboration and 'oneness' that was at the heart of our actions so many years ago.  Perhaps coming together around the Denver Principles will remind us that what is suffered by one, is suffered by all and that unless our message includes ALL voices, the lovely harmony of our choir will be diminished and so much more weak and ineffectual.

So, to unity, brotherhood and the power of one inclusive and representative message--I say, come join the movement again--but lets leave our ego trips behind this time.

Just the opinion of an HIV positive man in Detroit.

-Marco


Offline Peter Staley

  • Member
  • Posts: 1,337
  • Founder & Advisory Editor, AIDSmeds.com
    • AIDSmeds.com
Re: The POZ Army
« Reply #17 on: March 26, 2009, 11:54:26 AM »
Great post, Marco.  You made my day!

xoxo

Peter

Offline dtwpuck

  • Member
  • Posts: 1,013
  • дано мне тело, что мне делать с ним?
Re: The POZ Army
« Reply #18 on: March 30, 2009, 11:17:39 PM »
I don't know whether it's the city where I grew up (Seattle) and its generally overconcerned attitude towards all things politically correct   or maybe it's the fact that my mother is super supportive   or maybe it's both...  but I never really felt any pressure to hide my status.  I always felt it was my duty to be part of the movement, and I was.

Then i moved to Detroit and found a high degree of jaw dropping closeted behavior regarding being poz.  I'm still open about it here, but it feels like I'm being a rebel.  A friend from here came back home to Seattle with me once and was amazed at how open my friends are about talking about their status. 

Maybe it's just me. 

I don't fall easily for anything with the slightest bit of kumbaya to it.  I had many friends who have died.  Most of the people I knew when I was in college were in ActUp.  I participated just because it was the thing to do for an angry college boy bent on making the world see the truth.  I miss the energy of those days.  I was very young, but it was those men who influenced my sense of right and wrong more than anything else.

I don't find your post to be cynical at all.  I understand what you are saying about the zeitgeist you miss.   Just because things have changed doesn't mean that the urgency hasn't.

I joined.

Floating through the void in the caress of two giant pink lobsters named Esmerelda and Keith.

Offline Peter Staley

  • Member
  • Posts: 1,337
  • Founder & Advisory Editor, AIDSmeds.com
    • AIDSmeds.com
Re: The POZ Army
« Reply #19 on: April 01, 2009, 09:36:21 AM »
Thanks, Scott.  Well said.  I agree with you completely that today's level of closeted living among pozzies is "jaw dropping."

It's not just you. 

I wish folks realized how liberating it is to be open with everyone around them about the major health issue we're all dealing with.  I'm not saying that there aren't stupid folks out there that fear us.  But there are plenty that don't, and I've found this to be the case both in very blue NYC and very red Pike County, PA (where I spend half my time).  Even when you encounter the idiots, it's liberating to have this knowledge.  You're able to separate the wheat from the chaff, and end up with better quality friends and friendships.

It's great hearing from another pozzie who gets it -- it's just a fucking virus.

Offline Ann

  • Administrator
  • Member
  • Posts: 28,140
  • It just is, OK?
    • Num is sum qui mentiar tibi?
Re: The POZ Army
« Reply #20 on: April 01, 2009, 10:35:59 AM »
And it's not just you two either. Many people here have heard me say it before - the more we hide, the more we  have to hide. People fear what they don't know or don't understand, and only when they start finding out that some of their friends, neighbours, work colleagues etc are hiv positive will they become more knowledgeable and less fearful. I know this from personal experience of being well and truly out of the hiv closet. Closets suck, unless you're an item of clothing. ;)

Ann
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline gemini20

  • Member
  • Posts: 262
Re: The POZ Army
« Reply #21 on: April 01, 2009, 11:51:40 AM »
I must agree with Ann's last comment - I have said from the early years of my diagnosis that the sooner people realise that HIV can and does affect us all then the sooner we start to break down the stigma and discrimination and those in power start to listen!

Of course some people will never accept us (and I include my own mother in that category) but I couldn't and wouldn't behave in any other way - being open about my positive status I believe has contributed to my long-term survival (18 years and counting). And it has also led to some amazing opportunities, one of which is my recent appointment as an ambassador for Nelson Mandela's 46664 HIV/AIDS campaign.

Although I am a UK citizen I did sign up and make a donation so I hope that will enable a fellow person with HIV to benefit in the US.

I wish the project continued success in its endeavours.

Emma
Diagnosed 11th September 1991
Current CD4 count 484 (26%); viral load undetectable (December 2011).
Restarting boosted Prezista 08/04/11

Offline Elephant

  • Member
  • Posts: 37
Re: The POZ Army
« Reply #22 on: April 01, 2009, 12:14:06 PM »
We caution against the hetero world and now we caution against the gay and hetero world.

The closet within the closet.
 
World > Gay > HIV

Offline komnaes

  • Member
  • Posts: 1,898
Re: The POZ Army
« Reply #23 on: April 01, 2009, 12:21:20 PM »
I hope I am not the only person finding this thread insensitive. If the intention is to drum up for more supports for the Denver Project I can understand - but do you - Peter - and some other folks here have to rise the rhetoric to a level that I feel almost insulting?

Here's my case - I do whatever I can to support my people; I do volunteer work and so on and write papers for organizations like Amnesty International on lesbigay and HIV issues. I feel that it's a better use of my skills and knowledge. I help my fellow HIVers when I can.

But I choose NOT to open and get on the rooftop to shout to the world about my HIV status. HAART somehow gives me the option, whereas if I was infected say 20 years ago with a CD4 level quickly dropping below 250 I probably would have no where to hide.

Do I feel shameful of being HIV positive? Hell NO. But then again I am not prepared to see why my fellow HIVers would view me as a coward and engaging in jaw-dropping self-denialism; and to feel that whatever reasons I give to not open about my status completely to everyone would be seen as holding back your progressive agenda of silence=death is almost as Draconian as the rest of the world putting a stigmatized label on me.

Why you feel you are entitled to do this to me and other fellow HIVers just because we feel that it's not within us at this stage of our lives to embrace a total disclosure tactic? And why whatever reasons I might have for NOT disclosing completrely would sound like excuses to you just because I don't share your view that complete disclosure equals empowerment.

I have refrained from responding to this for days - but these forums have been an oasis of sanity/safety net for me for almost 2 years now, and I thought our approach is to look at everyone's situation and advise for the best of their interests, or is it? Or the political agenda of some is more important now than others'?

Or there are people (out t)here who might still think a solidarity that will inevitably be diluted as this disease affect more and more people could somehow be regained by separating the strong (disclose) from the weak (not disclose)?

I am happy for those of you that have taken this leading position, but be assured that some of us at this point will NOT be led by you just because you're taking this perceived moral high ground, and I for one will NOT be belittled just because I am not there standing with you on the rooftop.

I do what I can, and I will continue to do what I feel right.
Aug 07 Diagnosed
Oct 07 CD4=446(19%) Feb 08 CD4=421(19%)
Jun 08 CD4=325(22%) Jul 08 CD4=301(18%)
Sep 08 CD4=257/VL=75,000 Oct 08 CD4=347(16%)
Dec 08 CD4=270(16%)
Jan 09 CD4=246(13%)/VL=10,000
Feb 09 CD4=233(15%)/VL=13,000
Started meds Sustiva/Epzicom
May 09 CD4=333(24%)/VL=650
Aug 09 CD4=346(24%)/VL=UD
Nov 09 CD4=437(26%)/VL=UD
Feb 10 CD4=471(31%)/VL=UD
June 10 CD4=517 (28%)/VL=UD
Sept 10 CD4=687 (31%)/VL=UD
Jan 11 CD4=557 (30%)/VL=UD
April 11 CD4=569 (32%)/VL=UD
Switched to Epizcom, Reyataz and Norvir
(Interrupted for 2 months with only Epizcom & Reyataz)
July 11 CD=520 (28%)/VL=UD
Oct 11 CD=771 (31%)/VL=UD(<30)
April 12 CD=609 (28%)/VL=UD(<20)
Aug 12 CD=657 (29%)/VL=UD(<20)
Dec 12 CD=532 (31%)/VL=UD(<20)
May 13 CD=567 (31%)/VL=UD(<20)
Jan 14 CD=521 (21%)/VL=UD(<50)

Offline dtwpuck

  • Member
  • Posts: 1,013
  • дано мне тело, что мне делать с ним?
Re: The POZ Army
« Reply #24 on: April 01, 2009, 06:33:00 PM »
Komnaes, I respect your opinion and they way you have chosen to deal with disclosure of your status.  I don't agree with you that this thread is condescending.  Everyone has a right to express their feelings, and, well,   there is a considerable signifigance to the logic that being out about something changes who has the power about that something.  Take it from the drag queens and bull dykes who rioted at Stonewall...   there are countless examples in history where the people who came out about something were the ones who changed it for the rest.

Your post opens my eyes to a perfectly valid opposing opinion.  And, I personally believe that there is no formula for how to handle disclosure.  Some of us choose to live our lives in the open.  Some of us do not.

What I think that is painful for many people, though, is to feel alone.  For every scared person here on this forum, there are thousands who never find it.    I do not ask you to do this.  But I will continue to be open and frank about my status.  I am a successful professional who is visible, healthy and articulate.  It happens all the time that people come up to me and want to talk about how they just found out, how they feel alone, how they never knew anyone else who is poz.   It's how I help.

Others here help by being political.  We need that.  In order to do that, they have to motivate others to join the cause.  No one is forcing anyone to go to a demonstration wearing a skeleton mask.  But, I can tell you this much... you and I owe a lot to people like my friend Roger, who handcuffed himself to a Massachusetts State Supreme Court justice in the 80's in order to get enough attention to make things happen.  The fact that HAART is available so quickly, compared to other drugs, is a direct result of action taken by people like Roger. 

I think it's important to acknowledge that we all have something to give and a different way of communicating.  I seriously doubt it's meant to be condescending in any way.  And when others express frustration over all this shit... then see it as frustration.  It's tough...  let's all contribute in our own way.

Floating through the void in the caress of two giant pink lobsters named Esmerelda and Keith.

Offline Peter Staley

  • Member
  • Posts: 1,337
  • Founder & Advisory Editor, AIDSmeds.com
    • AIDSmeds.com
Re: The POZ Army
« Reply #25 on: April 02, 2009, 09:03:17 AM »
Shaun (komnaes) -- I'm glad you spoke up, as I think this discussion is hugely important.

I admit that I knew full well that my comments would piss some folks off in these forums.  But I still think it's important to challenge people's assumptions and choices about keeping their HIV status in the closet.

Let me start by saying that I'm NOT advocating that everyone must publicly announce their status.  For some, this would be dangerous.   Just as there are some neighborhoods in New York City where it would be more stupid than courageous to hold my boyfriend's hand, there are some places in this world where it's very dangerous to disclose one's status.  One's physical well-being must come first.

But I think that the time of physical threat has almost completely passed in almost every corner of the U.S., and I would imagine the same could be said for your home town, Hong Kong.  So that leaves us with a discussion of emotional well-being, and communal responsibility (for those who believe in this concept).

With emotional well-being, the evidence is pretty clear.  Closets are unhealthy.  I should know -- I lived in one during my adolescence and early adulthood.  My gay closet lasted until HIV forced me out of it at the age of 25.  Up until then, I remember being very defensive about how comfortable I was keeping this huge part of my life secret from those around me.  There were times when I'd meet out and proud gay men, and some would challenge my decisions in this regard.  I'd get as angry as you got after reading this thread.  How dare they!  I've made my choices, and am fine with them.

It's only with hindsight that I realize now how much I suffered from my well-constructed closet.  I had this illusion of being close to my parents and siblings, when those relationships were completely stilted compared to where they are now.  I could go on and on about the remarkable differences between my closeted life and my "Here I am, world!" life.

I'm glad those gay men started prepping me for this better life.  I'm glad they challenged my assumptions, and forced me to at least think about my choices up until then.

I'll save the discussion about communal responsibility for another time, but I mention it only to point out that our individual choices affect others.  For each of us that keeps our status a secret, there's another newly infected person feeling more alone and thus more stigmatized.  That person will probably decide it's best to keep their status secret as well, and the vicious circle continues and builds.

Bottom line, I remain strongly convinced that the stigma we all live with is largely self-inflicted.

Offline Ann

  • Administrator
  • Member
  • Posts: 28,140
  • It just is, OK?
    • Num is sum qui mentiar tibi?
Re: The POZ Army
« Reply #26 on: April 02, 2009, 09:45:04 AM »
For each of us that keeps our status a secret, there's another newly infected person feeling more alone and thus more stigmatized.  That person will probably decide it's best to keep their status secret as well, and the vicious circle continues and builds.

Bottom line, I remain strongly convinced that the stigma we all live with is largely self-inflicted.


Yes, this is exactly what I mean when I say the more we hide, the more we  have to hide.

Shaun, I'm also not demanding that each and every person come out of the hiv closet - but I do think that people should at least give it serious consideration. For a start, the stress involved in keeping it hidden can't be good for one's well-being.

I'd also like to point out that being out of the hiv closet doesn't necessarily mean "shouting" my status "from the rooftops". I certainly don't do this, but I also don't hide my status.

I have to admit that in the beginning, my status was an open secret (beyond my control - the details are in my blog somewhere) in my community and I did fear all of what many closeted people fear. The difference is, I soon found out that my fears were largely unfounded. Where I have encountered stigma or ignorance, I used it as a spring-board to educating such people. When the subject is broached in a calm manner, most people are very interested to get the real facts. I've lost count of the times people have thanked me for enlightening them. As has been mentioned before in this thread, people fear what they don't understand and arming them with knowledge dispels the fear.

I also have to say - and I know this will probably piss some people off - in my experience, the people who are deeply closeted are the same people who would have discriminated against hiv positive people before they got their own diagnosis. It seems to me that they project their own pre-hiv feelings on to others and assume they will be treated the same as they would treated hiv positive individuals pre-diagnosis. Again, this is in my personal experience.

Ann
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline komnaes

  • Member
  • Posts: 1,898
Re: The POZ Army
« Reply #27 on: April 02, 2009, 10:40:19 AM »
Peter/Ann - let me start by saying that I have a lot of respect for you both for keeping this space open for us. And I didn't mean to pour cold water on the Denver Project, which I think is a worthy cause.

Now - my post, if not clearly stated already, is about why belittling folks that want to remain in this so-called HIV closet, that we, they are part of the reason of why we're all still stigmatized. IF only, your argument seems to go, we all freely be open about our status unconditionally this stigma would go away.

(It seems to me that it's your definition of out of the HIV closet - while there's no need to broadcast it, when asked one should not remain silence or, er, lie. Hence I use the word "unconditional".)

Let's just not even mention some obvious cases which being out would be stupid - like filling in "HIV positive" in an immigration form of a country that bans us from entering - why would the idea of me exercising the rational judgment of withholding this information when I deem necessary at this stage of my life can be considered detrimental to the overall well being of everyone with HIV?

I don't think I am getting a convincing answer yet, and please don't give me the same general rhetoric analogy of gay right, that IF only all lesbigay folks changed into the color blue tomorrow that all discrimination would be gone. I have heard too many times it being mentioned in all the lesbigay right groups that I was once a member.

I suppose I am more disappointed because I look to public figures like your good self to come up with more effective tactics than this wholesale and abstract out-of-the-HIV-closet. I can't think of any, but I know this simplistic approach just won't work now, and worst still is that your posts are giving me this lingering taste that among all those words there hid an accusation that those refuse to buy this is now part of a problem.

I am in Hong Kong now, but I grew up as a young adult in Toronto and then San Francisco, which the latter is the ground zero of HIV, back in a time when the US government categorized HIV as a gay disease and refused to do anything about it. I did all that radical protest tactics as a student with groups like GAPA. I wasn't infected back then, but I was surrounded by the disease, a time silence truly meant death.

I feel I have done my bit, and I will continue to do what I feel right.

In short, what I am asking is very simple - the same as when I am approached and asked why don't I be more upfront about my HIV status and why not join this empowering group of embracing openness, tell me more what you have that will convince me that it will definitely make a difference.

I at one point have posted my photo here.. so lets don't go into the area of why am I not be more open about my status.

(edited for typos)
« Last Edit: April 02, 2009, 11:28:30 AM by komnaes »
Aug 07 Diagnosed
Oct 07 CD4=446(19%) Feb 08 CD4=421(19%)
Jun 08 CD4=325(22%) Jul 08 CD4=301(18%)
Sep 08 CD4=257/VL=75,000 Oct 08 CD4=347(16%)
Dec 08 CD4=270(16%)
Jan 09 CD4=246(13%)/VL=10,000
Feb 09 CD4=233(15%)/VL=13,000
Started meds Sustiva/Epzicom
May 09 CD4=333(24%)/VL=650
Aug 09 CD4=346(24%)/VL=UD
Nov 09 CD4=437(26%)/VL=UD
Feb 10 CD4=471(31%)/VL=UD
June 10 CD4=517 (28%)/VL=UD
Sept 10 CD4=687 (31%)/VL=UD
Jan 11 CD4=557 (30%)/VL=UD
April 11 CD4=569 (32%)/VL=UD
Switched to Epizcom, Reyataz and Norvir
(Interrupted for 2 months with only Epizcom & Reyataz)
July 11 CD=520 (28%)/VL=UD
Oct 11 CD=771 (31%)/VL=UD(<30)
April 12 CD=609 (28%)/VL=UD(<20)
Aug 12 CD=657 (29%)/VL=UD(<20)
Dec 12 CD=532 (31%)/VL=UD(<20)
May 13 CD=567 (31%)/VL=UD(<20)
Jan 14 CD=521 (21%)/VL=UD(<50)

Offline dtwpuck

  • Member
  • Posts: 1,013
  • дано мне тело, что мне делать с ним?
Re: The POZ Army
« Reply #28 on: April 02, 2009, 08:10:53 PM »

Now - my post, if not clearly stated already, is about why belittling folks that want to remain in this so-called HIV closet, that we, they are part of the reason of why we're all still stigmatized. IF only, your argument seems to go, we all freely be open about our status unconditionally this stigma would go away.

(...)

I suppose I am more disappointed because I look to public figures like your good self to come up with more effective tactics than this wholesale and abstract out-of-the-HIV-closet. I can't think of any, but I know this simplistic approach just won't work now, and worst still is that your posts are giving me this lingering taste that among all those words there hid an accusation that those refuse to buy this is now part of a problem.
 (...)

I feel I have done my bit, and I will continue to do what I feel right.

In short, what I am asking is very simple - the same as when I am approached and asked why don't I be more upfront about my HIV status and why not join this empowering group of embracing openness, tell me more what you have that will convince me that it will definitely make a difference.

(...)

Komaes ...  I am not sure anyone is explicitly stating that the stigma would go away if we all freely and openly stated our status.   Respectfully, I think you are inserting a bias here.  No one but the most ardent idealist would expect that a massive change in attitude will result in peace and love all over the world.

No one can say that your personal openness would DEFINITELY make a difference.  I can't even say the the sun will definitely rise in the East tomorrow.  But, that's not going to stop me from expecting it to happen.  If you are looking for a reason not to be more open, you can't blame it on the fact that Peter and Ann haven't definitely proven anything to you.  No one here is trying to change the way you behave.  Your experiences are your own.  I trust that your decisions are based upon your experience. 

I might be going out on a limb, but I am guessing that there is a part of your argument that coming out about HIV status can be dangerous.  One should be aware of his/her situation before doing so.   I can agree with this.   It is dangerous at times.  And, it can be hurtful.  People get rejected.  People get killed. 

By the same token, some of us have discovered a great deal of power through being open about our status.  Maybe we're lucky.  No one has ever threatened me personally because of my status.  If they have, well, I'm not aware of it.  I choose to ignore the stigma.  If I have lost opportunities because of HIV, well you wouldn't know it.  In fact, I kind of attribute part of my personal success in life to the fact that I have faced my own mortality, faced my own fear, and faced the fact that not everyone in the world has my best interest at heart.  But that's me.   

I also don't agree with your presumed assertion that public figures have a  responsibility to espouse points-of-view with perfect logical precision.  It doesn't happen in real life and it doesn't happen here.  The people who write on here are real people, with flawed logic and emotions.  It is a completely unrealistic expectation and and is unfair.  You are far too intelligent to be using that kind of argument.    Ann and Peter are not just leaders, they are participants.  They are human... just like you.

This is an important discussion.  There IS a danger to being honest.  That danger comes in both physical and emotional forms.  You are correct.    However, when you start looking at personal situations in personal contexts on a one-by-one basis, my personal experience leads me to believe that there are a whole lot of people who would benefit from self confidence, the knowledge that they are not alone, and the examples of people who have successully dealt with rejection, abandonment and loneliness.

I would suspect that your advice and help to people who are new to HIV would be extremely helpful.  It probably wouldn't always agree with mine.  But, it is up to each person to decide what works best for him/her.  I don't know all the answers.  And, I am frequenltly just flat out wrong.  I hope, however, that the thoughts I convey to others about how to deal with this pain-in-the-ass virus are taken as nothing more than one example of how to handle this.  I think the same would go for your undoubtedly valuable experience.

Best regards,
Scott





Floating through the void in the caress of two giant pink lobsters named Esmerelda and Keith.

Offline komnaes

  • Member
  • Posts: 1,898
Re: The POZ Army
« Reply #29 on: April 02, 2009, 09:05:42 PM »
Scott - I have thought hard before and after I wrote, and at this point I will stick to my viewpoints and I check back here regularly to see what others have to say.

If nothing else I am able to use a lot of brain cells while posting here, which is a good thing as this exercise seems to have been missing recently. ;)

Hugs, Shaun
Aug 07 Diagnosed
Oct 07 CD4=446(19%) Feb 08 CD4=421(19%)
Jun 08 CD4=325(22%) Jul 08 CD4=301(18%)
Sep 08 CD4=257/VL=75,000 Oct 08 CD4=347(16%)
Dec 08 CD4=270(16%)
Jan 09 CD4=246(13%)/VL=10,000
Feb 09 CD4=233(15%)/VL=13,000
Started meds Sustiva/Epzicom
May 09 CD4=333(24%)/VL=650
Aug 09 CD4=346(24%)/VL=UD
Nov 09 CD4=437(26%)/VL=UD
Feb 10 CD4=471(31%)/VL=UD
June 10 CD4=517 (28%)/VL=UD
Sept 10 CD4=687 (31%)/VL=UD
Jan 11 CD4=557 (30%)/VL=UD
April 11 CD4=569 (32%)/VL=UD
Switched to Epizcom, Reyataz and Norvir
(Interrupted for 2 months with only Epizcom & Reyataz)
July 11 CD=520 (28%)/VL=UD
Oct 11 CD=771 (31%)/VL=UD(<30)
April 12 CD=609 (28%)/VL=UD(<20)
Aug 12 CD=657 (29%)/VL=UD(<20)
Dec 12 CD=532 (31%)/VL=UD(<20)
May 13 CD=567 (31%)/VL=UD(<20)
Jan 14 CD=521 (21%)/VL=UD(<50)

Offline bocker3

  • Member
  • Posts: 3,459
  • You gotta enjoy life......
Re: The POZ Army
« Reply #30 on: April 02, 2009, 10:51:13 PM »
I will start by saying that I do agree with the basic premise -- being open about yourself, whatever it is, is generally a healthier way.  Yes, there are exceptions......  but generally, I agree with that.

Now -- the one thing that I have had a problem with regarding this entire thread is that the tone is not about encouraging others to be more open -- the tone has been about belittling those that do not.  These are very different tactics, that generally produce very different results.

I will pause here to point out that this is not a defensive posture from me -- I am completely out about my HIV status with my family and friends.  I am selectively out with people at work -- my boss knows, and a number of close co-workers know.  I am not ashamed nor bashful about it -- I once heard someone make a joke about AIDS while playing tennis (a physician, no less) and I publicly came out to the other 3 on the court to let them know this was simply NOT OK.

So -- I agree with you Peter -- although I suspect I'm not quite as open in a public sense as you -- my approach is to NOT hide and deny.  My status comes out when it needs to -- either for people who are close to continue to know the real me, or to show folks that we aren't "those people" (whatever that means to the individual at hand).

Back to the tone here --  I can tell you that, as a parent and a grandparent, I have never been truly successful getting my daughter to learn from relating my experience to her.  She needs to learn the hard way.  It doesn't stop me though -- even as she approaches 30.  My actions -- that she witnesses does have an impact however.  So, Peter, sharing your struggles are great and we all should do it, but you simply can't expect others to say, "Oh, now I see -- I think I'll jump on board."  simply because of someone else's experience.

And using phrases like "jaw dropping" about folks who aren't open is counter productive to your goal.  Blaming ongoing stigma on other's decisions (fear based, in most cases) to remain silent is what I find jaw-dropping.  Would it be better if we were all open -- most definitely -- but is the ignorance of others the fault of those living with HIV/AIDS??  I think not.  We are simply adding a new kind of stigma here.

So -- again, I agree with your premise -- it's your approach and tone that is rubbing me the wrong way -- and, I fear, hurting your goal.

Mike
(Who did sign up and make a donation, as well as check the box to publish my name on the websites)
Atripla - Started 12/05
Reyataz/Norvir - Added 6/06
Labs - Pre-Meds
Sep05 T=350/25% VL98,559
Nov05 288/18%  47,564
Current Labs
May2013 691/31% <20

Offline a2z

  • Member
  • Posts: 198
Re: The POZ Army
« Reply #31 on: April 03, 2009, 12:59:34 AM »
I admit that I knew full well that my comments would piss some folks off in these forums.  But I still think it's important to challenge people's assumptions and choices about keeping their HIV status in the closet.
....
With emotional well-being, the evidence is pretty clear.  Closets are unhealthy.  I should know -- I lived in one during my adolescence and early adulthood. 


I'm a bit conflicted by your blog post, which I think is a good thing.  I was out of the closet from the time I was 21 until about 30 when I decided, ya know, the closet isn't such a bad place compared to how I was being stereotyped, threatened, denied and treated.

I might feel differently now.  But another change I made to my life before coming positive is that I was going to let my friends lean on my more, and me on them less.

I've caused myself and my friends and my family enough grief in this life.  I really don't want to start now.  I've been very happy keeping my poz life in the closet.  I take my meds, and do not dwell on the likelihood life is shorter.  I just live it.

But you've given me something to think about.   Thank you.

Dates are blood draw dates:
9/4/14: CD4 948, 37.9%, VL 150
5/23/14: CD4 895 --.-% VL UD - Truvada/Isentress
09/21/09: CD4 898 27.0% VL 120 - back on track, same meds.High level enzymes, but less so
06/15/09: CD4 478 21.8% VL 1150 - high liver enzymes... looks like I may not be resistant
05/22/09: Fixed insurance, resumed medicine
04/17/09: Ran out of medicine, could not resolve insurance problems
04/01/09: CD4 773 28% VL 120 - high liver enzymes
12/01/08: CD4 514 23% VL 630
10/17/08 started Reyataz, Norvir and Truvada. -- possibly minor neuropathy, but otherwise okay.
9/10/08: CD4 345 17%, VL > 78K
8/18/08: CD4 312 18%, VL > 60K (considering meds)
12/19/07: CD4 550 28% VL > 100K (no meds yet)
Diagnosed 10/23/07

Offline Peter Staley

  • Member
  • Posts: 1,337
  • Founder & Advisory Editor, AIDSmeds.com
    • AIDSmeds.com
Re: The POZ Army
« Reply #32 on: April 03, 2009, 06:10:04 AM »
Mike -- I appreciate what you've said here about the tone of this thread (and my posts).  You're probably right that my current level of frustration -- and the reason for my angry tone -- is not helping my cause.  At this point, I've become so cynical about being able to make any sort of dent in the vicious circle of both exterior and self-inflicted HIV-related stigma that I doubt any approach will work.  Regardless, I do appreciate your feedback.


I will start by saying that I do agree with the basic premise -- being open about yourself, whatever it is, is generally a healthier way.  Yes, there are exceptions......  but generally, I agree with that.

Now -- the one thing that I have had a problem with regarding this entire thread is that the tone is not about encouraging others to be more open -- the tone has been about belittling those that do not.  These are very different tactics, that generally produce very different results.

I will pause here to point out that this is not a defensive posture from me -- I am completely out about my HIV status with my family and friends.  I am selectively out with people at work -- my boss knows, and a number of close co-workers know.  I am not ashamed nor bashful about it -- I once heard someone make a joke about AIDS while playing tennis (a physician, no less) and I publicly came out to the other 3 on the court to let them know this was simply NOT OK.

So -- I agree with you Peter -- although I suspect I'm not quite as open in a public sense as you -- my approach is to NOT hide and deny.  My status comes out when it needs to -- either for people who are close to continue to know the real me, or to show folks that we aren't "those people" (whatever that means to the individual at hand).

Back to the tone here --  I can tell you that, as a parent and a grandparent, I have never been truly successful getting my daughter to learn from relating my experience to her.  She needs to learn the hard way.  It doesn't stop me though -- even as she approaches 30.  My actions -- that she witnesses does have an impact however.  So, Peter, sharing your struggles are great and we all should do it, but you simply can't expect others to say, "Oh, now I see -- I think I'll jump on board."  simply because of someone else's experience.

And using phrases like "jaw dropping" about folks who aren't open is counter productive to your goal.  Blaming ongoing stigma on other's decisions (fear based, in most cases) to remain silent is what I find jaw-dropping.  Would it be better if we were all open -- most definitely -- but is the ignorance of others the fault of those living with HIV/AIDS??  I think not.  We are simply adding a new kind of stigma here.

So -- again, I agree with your premise -- it's your approach and tone that is rubbing me the wrong way -- and, I fear, hurting your goal.

Mike
(Who did sign up and make a donation, as well as check the box to publish my name on the websites)

Offline bocker3

  • Member
  • Posts: 3,459
  • You gotta enjoy life......
Re: The POZ Army
« Reply #33 on: April 03, 2009, 07:42:52 AM »
Mike -- I appreciate what you've said here about the tone of this thread (and my posts).  You're probably right that my current level of frustration -- and the reason for my angry tone -- is not helping my cause.  At this point, I've become so cynical about being able to make any sort of dent in the vicious circle of both exterior and self-inflicted HIV-related stigma that I doubt any approach will work.  Regardless, I do appreciate your feedback.

Peter --

I think that you are wrong here.  I think that there is some evidence in this post that you have "made a dent" -- or at least are able to see that there ARE folks who are willing and able to be open about their status.  I think that it is your expectations of some kind of utopia happening quickly that is the root of your cynicism.  People arrive places at different speeds -- this forum has many LTS, but it also has many folks who have only recently been diagnosed.  You did not come out of the closet within months of realizing you were gay (poor choice of words, I know -- but.....), we can't expect others to "come out" about HIV when they haven't internally come to grips with it yet.

So, don't give up -- it's good to push - we need people to push, just do so with the proper approach for the audience.  It really was through the support and stories on these boards that I was able to "normalize" my infection far more quickly than I ever would have thought.

One last plea though -- While I do think that stigma would diminish (not disappear) if more folks came out of the HIV closet, I don't think it is about "self-inflected HIV-related stigma" the stigma has been there from the get go, please find some other way to make this point -- one that won't get so many to put up a defensive wall. 

Keep on trying Peter -- please.

Hugs,
Mike
Atripla - Started 12/05
Reyataz/Norvir - Added 6/06
Labs - Pre-Meds
Sep05 T=350/25% VL98,559
Nov05 288/18%  47,564
Current Labs
May2013 691/31% <20

Offline Ann

  • Administrator
  • Member
  • Posts: 28,140
  • It just is, OK?
    • Num is sum qui mentiar tibi?
Re: The POZ Army
« Reply #34 on: April 03, 2009, 08:29:26 AM »
I certainly don't mean to belittle anyone who chooses to remain in the hiv closet. Not everyone can be open and I do understand that.

For example, a close friend of mine is very much closeted. Her reason for doing so is that she believes that her daughter would use her (my friend's) hiv status as yet another reason to hit the bottle (and knowing her daughter, I absolutely agree with her). Her daughter is an alcoholic and has used situations in my friend's life as an excuse in the past - and there's little doubt she would use this to the fullest extent possible. The daughter is currently in recovery, but it's a very shaky recovery and she's relapsed quite frequently. My friend realises that ultimately, she wouldn't be to blame for her daughter's actions, but, well, she's thinking of her grandchildren and what they go through as it is with their mother's alcoholism. I understand my friend's reasoning and I respect her decision.

Shaun, I totally agree with you that there are some circumstances where one would not disclose their status - your example of traveling to other countries being a very good one.

However, I do encourage people to be out about their status. Hiv is nothing to be ashamed about and getting rid of the shame so many of us feel is truly liberating.


In short, what I am asking is very simple - the same as when I am approached and asked why don't I be more upfront about my HIV status and why not join this empowering group of embracing openness, tell me more what you have that will convince me that it will definitely make a difference.


I'm going to start off with a disclaimer that what follows is my own personal experience and I do not intend to imply that everyone's experience would be exactly the same. However, I do know that my positive friends who are open about their status have all had very similar experiences.

On a personal level, the biggest bonus for me is that I don't have the stress of leading a double life. We all know that stress is one of the worst things for us health-wise as positive people. I couldn't stand the constant pressure and the constant feeling of lying to everyone in my life. I can't pretend to be someone I'm not.

My status cannot be used against me in blackmail type situations. I don't have to worry about people whispering about my status behind my back. I have no fear of disclosing in dating situations because my status is already common knowledge. I get asked out on a regular basis - by people who already know my status. Rejection doesn't really come into it because people who are put off by my status don't approach me to begin with. I can totally be myself in any social situation, without fear of letting something slip about my hiv status. If I feel unwell, I can say so and people understand.

On a more general level, my openness about my status gives me plenty of opportunity to educate others. I frequently have casual conversations in pubs about hiv and have dispelled many myths about hiv through those conversations. A common comment is "you don't look like you've got aids" - which gives me the perfect opportunity to let them know that MOST people who have hiv don't "look" like they do - and that means they need to use condoms with anyone unless they've been tested negative together and are monogamous.

One reason infection rates continue unabated is the fact that so many think "it will never happen to me" for whatever reason. When people talk to me and realise I'm just a middle-aged woman whose life is really no different to theirs, they understand that they are just as vulnerable to hiv infection as anyone. I've had quite a few people confide to me that they now use condoms as a direct result of knowing me and my situation. This is a major breakthrough in the heterosexual community because so many of us still, to this day, think that only gay men or people in Africa are at risk. I know, without doubt, that I've made a difference to many people, in both how they look after their health and also how they view people who live with hiv.

Even if one only makes a difference to one other life, it's worth it.

And as for the self-perpetuating cycle of stigma and our responsibility for that, I stand by my words. This does NOT mean that I'm "blaming" anyone or shaking my finger at anyone and tut-tut-tuting. I'm simply acknowledging that there is a definite connection, a cause and effect. It's one of those vicious cycle type things and I know it's not an easy thing to break out of. It's like the cycle of depression, for example. It's easy to get caught up in the downward spiral and not so easy to get out of it. That doesn't make a person "bad", it just makes them human.

I mentioned in my previous post that I've discussed in my blog (which needs updating, I know!) the process I went through when newly diagnosed and I also discussed this self-perpetuation thing. If anyone's interested in reading what I had to say, here's the link:

http://blogs.poz.com/ann/archives/2007/02/19022007_0151.html

Ann
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline Trish

  • Member
  • Posts: 332
Re: The POZ Army
« Reply #35 on: April 03, 2009, 04:21:58 PM »
Hi Everyone... been a long time.

I find this thread very interesting as I have struggled with disclosure for many years out of the 20 that I have been living with this virus.  I tried to hide my status from lots of folks, but my family & a few close friends knew.  I chose to tell them pretty much from the get go and they've been very supportive.  A few years into my infection, I started telling a few more people, but not in the best of ways.  I blurted it out in the bar when I was drunk on many occasions and completely forgot about it.  Over time more people knew my status than I had ever imagined.  But still I felt a need to hide and lie about my certain aspects of my life, for instance, why couldn't I hold a job for too very long?  I always said that I had bad knees or back (which is true), but the main reason was HIV and depression.  I've been asked why I haven't had children and I would lie and say, "I don't like kids, I'm selfish, I wanna be free to do what I want to do."  Again, all lies... I love kids and would have loved to have had one, but... ya know.

Since moving from Brooklyn, NY to Kansas City, MO 3 years ago, I have been such a "Disclosure Whore," A term a friend of mine (who most of you know) and I call ourselves.  We have no problem disclosing our status.  My reasons for disclosing are quite simple... 1. I don't have hide & lie anymore.  2. I don't feel ashamed anymore.  3. Since coming out, I find that most people are accepting (at least in my life, not saying it will happen for everyone, everytime.)  4. I feel liberated each & every time I disclose my status.  5. Disclosing gives me the opportunity to educate people and help keep them safe from contracting HIV, because I certainly don't like when I hear of another person finding out they are HIV-positive.  I cannot stand by and simply allow it to happen to others.  I choose to disclose because I know that it helps others. 6. I feel that disclosure will help the stigma go away. Maybe not completely, but it certainly lessens it.

Just yesterday, I disclosed my status on Facebook in one of my notes.  I have had nothing but positive responses from everyone.  From friends, to folks I don't even know.  It's amazing really.  I never imagined how much people really do care and want to know more about HIV/AIDS.  The folks I know on FB are HIV-negative and they believe that HIV/AIDS needs to be spoken about more and in everyone's face.  They were grateful that I opened up to them and have given them a true testament to what it is like to live with HIV.  These are just some of the things people have written to me.

I do not begrudge anyone for keeping their status silent.  Gosh, I've done it many years ago, but I learned that it only hurt me more to keep it bottled up.  The stress was a killer.  I only suggest that you give it some thought.  And maybe even give it a try once in a while.  Not everyone will be accepting of the news, but I'm willing to bet that most will be.  And my attitude is:  For those who do not accept me because I live with a virus, I really don't need them in my life... and I'd tell them so.  I only take people into my life who are willing to at least try to understand that HIV is just a "fucking virus."

Thank you Peter for writing this... keep up the great posts & blogs.

BTW, I did sign up last month.

All the best to all of you!!

Trish :)
"People grow through experience if they meet life honestly and courageously. This is how character is buit."  Eleanor Roosevelt

Offline Peter Staley

  • Member
  • Posts: 1,337
  • Founder & Advisory Editor, AIDSmeds.com
    • AIDSmeds.com
Re: The POZ Army
« Reply #36 on: April 04, 2009, 08:08:14 AM »
Hey, Trish.  Thanks for the post and the kind words.  Your detailed descriptions of both living in and out of the HIV closet were illuminating, and will hopefully inspire others.

If anything, this thread has prompted you to return here after we've missed you the last couple months -- now that's something to celebrate!

Cheers,

Peter

Offline BT65

  • Global Moderator
  • Member
  • Posts: 10,107
Re: The POZ Army
« Reply #37 on: April 04, 2009, 08:17:28 AM »
Actually a couple weeks ago, I went on NAPWA's website and joined. 
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline dtwpuck

  • Member
  • Posts: 1,013
  • дано мне тело, что мне делать с ним?
Re: The POZ Army
« Reply #38 on: April 04, 2009, 04:59:24 PM »
Trish... funny story about facebook....  my status is in my profile and I completely forgot about it..   Turns out my partner neglected to tell his family that bit of information.  His family freaked a little I think; although they've been super nice to me now.  Before that, I was just the weird guy with all the tattoos that hangs around their brother.  lol

Anyway... just an aside.
Floating through the void in the caress of two giant pink lobsters named Esmerelda and Keith.

Offline Trish

  • Member
  • Posts: 332
Re: The POZ Army
« Reply #39 on: April 05, 2009, 10:01:18 AM »
Hey Peter, good to see you.  Actually, I think I've been gone for more than a couple of months... probably about a year, although I do check in on occasion to see what's going on here.  Sometimes I'll post, but sometimes I don't.  I'll probably be a bit more active now, but I've been very busy with work and HIV advocacy.  Always doing something... sorry off topic.

Anyway, I love this topic & hopefully one day we'll see that everyone can speak about HIV/AIDS openly, honestly and responsibly.  I would love to see that in my lifetime, but I'm not holding my breath.  Just a glimmer of hope!!  :)

DTW... I'm glad your partner's family has been nice to you, always a good sign.  BTW, Love the tats, I'm getting my first one next week for my birthday.  Woohoo!! :)
"People grow through experience if they meet life honestly and courageously. This is how character is buit."  Eleanor Roosevelt

Offline actupts

  • Member
  • Posts: 16
Re: The POZ Army
« Reply #40 on: April 05, 2009, 06:57:22 PM »
As a long term AIDS survivor who was a community journalist, and a former member of PWAC-Denver and San Francisco's ACT UP/Golden Gate, I firmly believe that AIDS service organizations were the downfall of community activism and that any revival of community organizing would need to be scrupulously separated from full time, paid, organizations.  Many, if not most, large ASOs have jumped on their funding agencies' bandwagon of restigmatizing HIV and people with HIV.

During the mid-to-late 1990s, San Francisco's AIDS organizations grew into massive bureaucracies that pushed out most of the GBLTs and People with AIDS who founded them. Instead, HIV-negative heterosexual social worker types now manage many HIV organizations and view the clients with disdain.    Stereotypically queer behavior such as going to sex clubs and drag are being repathologized as “sex addiction,” “transvestic fetishism,” and “gender identity disorder.”  People with AIDS who make legitimate complaints or who question their HIV care are labeled with “personality disorders.”  The community “representation” on the CARE council largely consists of hand-picked clients who are beholden to one or more organizations.  (One CARE council member was even named to the council despite her being in a locked psychiatric facility run by an AIDS behemoth.)

At the same time, AIDS activists were marginalized, deliberately conflated with AIDS denialists, or offered financial incentives to follow the “party line.”  Many excellent AIDS activists wore themselves out fighting with agencies over matters ranging from salaries to completing, on their own behalf, escalating  and repetitive demands for proof of income, HIV status, residency, etc.

The result was AIDS organizations that engage in social engineering of the communities they are supposed to help while increasingly employing people who view AIDS as a source of income and not a subject for activism.  No ASO will meaningfully challenge government initiatives to restigmatize HIV as long as their main source of income is the same government agency.  Nor will they sit by while AIDS patients criticize their sinecures.

Offline Jody

  • Member
  • Posts: 1,844
Re: The POZ Army
« Reply #41 on: April 05, 2009, 08:08:39 PM »
When I clicked submit on the web site I had it go back to the page to fill out info so I clicked submit again but it did not appear to take.

Jody
"Wake up to find out that you are the eyes of the world".
 "Try to discover that you are the song that the morning brings."

Grateful Dead

Offline Jody

  • Member
  • Posts: 1,844
Re: The POZ Army
« Reply #42 on: April 05, 2009, 10:24:14 PM »
Dear actupts...Thanks for a thorough post regarding the need to have ASO's always be there for their clients and not just the perpetuatiion of their own existences....They have historically provided a centralized place for folks to go with a myriad of issues but we need them to always be totally accountable to our issues.  Good to put this out there.

Trish...It is good to see you post here again!

Jody
"Wake up to find out that you are the eyes of the world".
 "Try to discover that you are the song that the morning brings."

Grateful Dead

 


Terms of Membership for these forums
 

© 2014 Smart + Strong. All Rights Reserved.   terms of use and your privacy
Smart + Strong® is a registered trademark of CDM Publishing, LLC.