What Matters?

 In my practice working with clients when they present a situation that is difficult for them and they want resolution I ask them the question, “What matters?”  In the answers to this question typically reveal what is going on.  Of late I have been working with the Wellspring group on a photo project called, “How I Live with HIV.”  The project was born of the groups desire to show the community how they live with HIV as a response to the news of increasing numbers of new infections.   They enlisted, in good faith, my help to bring this about.  Their discussions about how this project might look revealed that they felt this would be a work with one voice and be shared as a whole.  They wanted to show best how they are challenged by living with the specter of a life threatening illness, an illness that changes how they look at themselves and that changes their bodies.  Each person who participated brought their own unique voice to this work and proudly so.

Our development department who puts on our fund raiser, “Festival of Life” wanted this piece of art at the event so that the part of the community who might not know may see how these individuals live with HIV.  It was put to the group that their art piece was requested and they consented to allow their art piece shown.  They even agreed with the request of Development to attend the event to speak to those who might have questions about how they live with HIV.

Accompanying each pair of photos of this piece of art was a narrative by the artist.  This narrative, paired with the photo, is the artist’s best expression to the community of their struggles.  They are all powerful and compelling.

Development indicated that the photos had to go before a selection committee to assure that they felt the photos were appropriate. They offered that if one photo was not acceptable then they could still show the others.  I again took this to the group and they replied that this is a single piece of expression and they would not allow it to be altered.

As it happens two of the photos were deemed inappropriate and there was a request that we find two more photos the artist took that were more acceptable to be shown.

My bosses, Marcus and Luis said they wanted me to contact the artist and ask him to choose two other photos from the ones taken by him to be shown.  I felt this was offensive because I felt that the artist was being told his best expression of how he lives with HIV was being deemed inappropriate.  I informed them again that the group considered this one piece of art and not a piece meal of works.  My bosses didn’t see it this way and they considered all of the photos taken were part of the work so they felt switching them out was fine.  Notice, “THEY” felt switching it out was fine.  They wanted me to contact the artist to have him pick the two other photos.  THEY had seen some they thought would be acceptable and suggested that I discuss those with the artist.

I was offended by their request I felt I was being asked to do something that goes against everything I believe deeply about respecting others choices.  I reluctantly did as they requested.  Below you will see some of the responses from the artist himself and his partner who posted his comments on the internet to a Tucson group that I am a respected part of.  These comments will demonstrate to you the feelings they now have for me and toward this action.

This is the artist first comments to me:

 “Oh, fercrissake. It has been my position from the beginning that if we sanitize the HIV/AIDS phenomenon, we eliminate one of the strengths of our fight. AIDS is NOT pretty-- and SAAF had damn well better reralize that.  If we pretend that HIV among  M2M is not a sexual issue, then why are we instructed to tell others "how I live with HIV"? If it was to be photos of friends sitting around my kitchen table, then that should have been communicated from the beginning.  Here's what I can and will do to satisfy the censors:  I have two of the images of the "young man surrounded by barbed wire", which is very artistic, not in-your-face, and so sweet and nonthreatening that I have the images framed in my front room. The FoL personnel are welcome to use those if they like, although they are far too pretty to have any real impact, in my opinion.

Sorry to unload on you, Paolo, who have been nothing but supportive to me and everyone else I know. You have three images I would give my permission to use-- "Hot Wired", "Wired" (which I think sends too strong a racial message) and "Still Life With Kumquats" (although I've always found kumquats to resemble testicles, so you'd better check with the scaredy-cats at SAAF before showing them...)”

This is the artist’s partners response that was posted on the group web site:

 As some of us know, there was a photo contest going on over the last
few months to dramatize what it's like to Live With HIV. It may not
have been an official SAAF event but the meetings were at their office
and they were overseen by a person on the paid staff of Southern
Arizona AIDS Foundation. My partner Carl put his heart and soul, not
to mention our computer and photo software, into this as a contestant.
Pictures were chosen by a committee of judges and a couple of Carl's
were selected. I was fiercely proud of these images having helped
Carl with some of the logistics and lighting and set decoration, but
the vision was his. I did not see any of the other contestants'
entries but I don't doubt they were moving and powerful.
Now we have received a censorship notice from the SAAF staff person
overseeing this that the selected images are too. . .uh, something for
display. I guess they are too naked or too male or too sexual or too
human; the exact wording of the rejection is typical tight-lipped
boilerplate and is not relevant to my point here. Carl is being told
to withdraw his entry and pick another from the cutting room floor
that the SAAF crowd can live with.
As not so many folks in this town know, it was SAAF's super-safe and
uber-enforcement mentality that brought B+ into existence two years
ago. People on the SAAF payroll blindsided and libeled the local
members of a national organization called Strength In Numbers in such
a way as to force S-I-N to disband here in Tucson. They used scare
tactics and character assassination to promote their own safe agenda
and ram it down S-I-N's throat. Now I don't begrudge them the
promotion of their safe agenda, but I do not think it is OK for any
group to distort the facts or sweep them under the rug or otherwise
ignore reality and pretend they speak as if from an oracle.
Maybe it's news to SAAF, but HIV is usually transmitted sexually. And
mostly among homosexual men who are a lot more sexually active.
Living with HIV in the post-cocktail era has become simpler in some
ways but a lot harder in others. The people who entered the contest
tried to express that struggle with its downsides and its upsides.
But apparently, not in an adequately safe manner. Guess what: life is
dangerous. Sex is scary. Human physiology not to mention psychology
is very poorly understood especially by doctors. SAAF can and does do
many great things. But weighing in to dictate to us who live with
this how to "acceptably" express our feelings is not their place. The
contest as it has now been diluted down is an insult to the Tucson
community who participated in good faith. I ask that the members of
B+ reply here to express their views pro or con to the points I have
raised. Thank you. --Thomas Higgins

This is the artist second comment to me:

I continue to be worried about my pals near Bullhead City. Oddly, the image they worked out with me during their visit last Easter weekend, addressed "How I Live With HIV" in a decidedly organic manner, with both members of the imagery presenting ideas, thoughts, actions throughout the afternoon. One image, which is on the B+ site, is of Bartt with a mouthful of Norvir, pink and delictible. THESE are the images the public needs to see. And of our wasted, bodies, the unkindnesses of both time and disease. I actually have proposed a fashion show, with HIV+/AIDS guys and gals wearing nothing but underwear. It is high time we moved to the next step beyond "The Naked Truth About AIDS"-- which, I think, is stunning, but needs an updating.

Visibility=Life. I will be invisible when I'm dead and gone, but not now.

I spoke with my bosses about this and though they agreed with me on some level they indicated to me that Development was doing us a favor by showing this piece of art at the fund raiser.  Some favor, a favor that continues to marginalize and insult those of us living with HIV in this community.

We as those who work with those living with HIV/AIDS, including myself as a 23 year survivor, we know all too well how many people like to make choices for us and speak for us.  Sadly even some who see these injustices do not stand up for the rights of people living with HIV/AIDS and allow things as this to happen.  People living with HIV/AIDS have perhaps one of the most difficult, life consuming occupations; living with HIV.  That we now ask them to change how they want to express best how they live with HIV by altering their artist expression is offensive to not only me but to them as well.  This kind of insult hurts not only the artist but all of those artists in this project, the HIV+ community in Tucson and me.  As well, I have lost credibility with my HIV+ peers, credibility that has taken me four years to establish.  Not to mention that I am now having difficulty saying I am proud to work here at SAAF.

Looking at this situation, “what matters” is a stand taken to demonstrate a solidarity to up hold respect for and dignity of those of us living with HIV/AIDS.  After all we face, perhaps, the greatest challenge sometimes is showing others how we LIVE with HIV. It keeps ringing in my ears that what matters is how you treat people, I treated others with respect and SAAF did not offer me such. 

I was fired from my job at SAAF today 11/19/2008 because I breached client confidentiality, according to them, this flatly did not happen. I am saddened that today I had to leave the building at SAAF not being able to see to my clients needs or knowing if anyone will give a damn about them.