This is What I Want, Too…

I just came across this on a friend’s Facebook page, and knew I had to post it here.  It’s by a woman named Zoe Leonard, an artist and member of the collective Fierce Pussy, which is also associated with Act Up (AIDS Coalition to Unleash Power).  To be honest, I’d never heard of her before today (although I’d certainly heard of Act Up back in the days when I worked with people with HIV/AIDS in New York), but when I read this quote I felt that it had to be a part of this blog:

“I want a dyke for president. I want a person with aids for president and I want a fag for vice president and I want someone with no health insurance and I want someone who grew up in a place where the earth is so saturated with toxic waste that they didn’t have a choice about getting leukemia. I want a president that had an abortion at sixteen and I want a candidate who isn’t the lesser of two evils and I want a president who lost their last lover to aids, who still sees that in their eyes every time they lay down to rest, who held their lover in their arms and knew they were dying. I want a president with no airconditioning, a president who has stood on line at the clinic, at the dmv, at the welfare office and has been unemployed and layed off and sexually harassed and gaybashed and deported. I want someone who has spent the night in the tombs and had a cross burned on their lawn and survived rape. I want someone who has been in love and been hurt, who respects sex, who has made mistakes and learned from them. I want a Black woman for president. I want someone with bad teeth and an attitude, someone who has eaten that nasty hospital food, someone who crossdresses and has done drugs and been in therapy. I want someone who has committed civil disobedience. And I want to know why this isn’t possible. I want to know why we started learning somewhere down the line that a president is always a clown: always a john and never a hooker. Always a boss and never a worker, always a liar, always a thief and never caught.”

I’m with you, Zoe.

Understood

Early on in the book, I write about one of my first clients, Margaret–“a frail crack addict who really–like so many of the others–wanted to be liked.”  She was a tiny, sweet, energetic little thing who was really happy and excited to be getting a room in a crummy SRO hotel, and to be going out shopping with me to get a few things to make it more comfortable.  She passed away shortly afterwards.

That part about “wanting to be liked”–wanting to be understood as being someone who was more than the stereotypical image that many of us have of being a “crackhead,” or a “drug addict”, or a “homeless person”–is an important part of the book.  It was absolutely true of David, who, as far as I can tell, had very rarely in his life had a sense of being understood beyond those and a few other labels (one of the last of them, of course, being “junkie with AIDS”).

Almost without exception, the people I worked with (David included, obviously) always seemed very happy when they were given a chance to talk about their lives outside of those labels, their childhoods, their interests, their dreams…anything, really.  Something in them seemed to change when they realized that someone actually wanted to hear their stories, or when someone looked them in the eye, shook their hands, and asked them about themselves beyond the necessities of the paperwork.

Even now, when my son gives some money to a homeless person on the street, I tell him to look him or her in the eye and, at the very least, say a few words–let him or her know that he actually SEES them.

That’s why the Animals’ “Please Don’t Let Me Be Misunderstood” is on the playlist for Holding Breath: A Memoir of AIDS’ Wildfire Days.  Here’s the link to the song (ignore the suits! 🙂 ):

http://www.youtube.com/watch?v=d2FT4FprxDg

(Holding Breath: A Memoir of AIDS’ Wildfire Days is available at:http://www.amazon.com/dp/B009TV4CE6

My Intolerance for Intolerance

These days, I live in northern Florida; I live on the beach, and it’s beautiful, but (as I mention in my Author’s Bio. for the book, and on my “About” page here), I dream pretty much every single night about being back in New York City.  Maybe one day I’ll move back.

Northern Florida is–to my surprise, really, as I’d always thought of the town I currently live in as kind of a happily eccentric hippie haven until I actually moved here permanently–a bastion of the far Right and Christianity in its most conservative (and, in my mind, intolerant) form.  I’m so far to the left that I’m on the brink of falling off the map (something which was usually not much of an issue at all “up North”), so I often feel a bit disoriented when I’m out and around here.

I don’t ascribe to any one spiritual path, but if I were forced to describe myself I guess I’d have to say that I come closest to being a Buddhist with a firm belief in God (although I understand God in very different terms than God is often portrayed in the Abrahamic religions).  Because of that, I’m trying to learn equanimity, and non-judgement, and unconditional compassion.

But every so often something I see or hear down here (not that I never experienced similar things up North; it was just either less often or not as blatant) that is a serious challenge to the abovementioned three goals.  Two of the worst (as you might suspect, if you’ve read or know anything about the subject of my memoir, Holding Breath: A Memoir of AIDS’ Wildfire Days) have had to do with AIDS.

The first was a bumper-sticker.  Down here, I see a lot of them that simply annoy or disturb me, but I’ve become somewhat used to them.  One day, however, I was driving behind one of the big-ass trucks that so many people down here like to own, and I saw, much to my surprise, a red AIDS-ribbon bumper-sticker. I hadn’t seen one of those in a LONG time, and certainly didn’t expect to see one in Jacksonville.  For a minute, it made me happy.  Coming up a little closer behind the truck, however, I saw that someone–either the truck’s owner, as a joke, or someone else who’d seen the sticker–had shot at it multiple times with what I assume was a BB gun or something.  I was sickened.

The other incident–excuse the expression, but there’s no better one–pissed me off more than just about anything has in a very long time. I was driving, and listening to the radio–one of the not-so-great rock ‘n’ roll stations down here.  One of those snarky, frat-boy-type announcers that are, I suppose, considered “funny” to some came on to make a “joke” that had something to do with encouraging I.V. drug users to shoot more drugs so that more of them would get infected with HIV.  The people at that station would have been pretty taken aback at the profanity that I unleased upon them at that moment.  That was last year, and–even with the dearth of decent music to listen to down here when I’m driving–that was the last time I ever listened to that damned station.

So far, my own capacity for tolerance goes only so far.

(Holding Breath: A Memoir of AIDS’ Wildfire Days can be found on Amazon.com at: http://www.amazon.com/dp/B009TV4CE6.)

A (Somewhat) Different Kind of Grief

As I said, I don’t want to post too many excerpts from Holding Breath: A Memoir of AIDS’ Wildfire Days here, and the one that follows will be the last (the book is available at: http://www.amazon.com/dp/B009TV4CE6).  However, what I’ve written about here is a very important part of the book; when I learned about what “disenfranchised grief” is (the definition here is by Kathleen R. Gilbert, Professor and Associate Dean at Indiana University, and is the best one I’ve come across), it finally explained to me why the grief I’d suppressed to a great extent after David passed away came back to hit me like a hurricane sixteen years later.  It may be useful to others who experienced losses in similarly “unacceptable” relationships, so I wanted to post it for them:

“Nor did I have any idea that there was a name for what I’d somehow believed was peculiar to me, and that, especially in the 1980’s and early 1990’s, there were many people who had found themselves in the same position.  The term for it is ‘disenfranchised grief’; I don’t remember how I came across the definition online, but reading it gave me, for the first time, an understanding that at least I wasn’t alone in my transgression of the rules, and that I could perhaps at least start to forgive myself for prematurely laying my grief aside and moving on at the time:

Disenfranchised grief is the result of a loss for which they do not have a socially recognized right, role or capacity to grieve. These socially ambiguous losses are not or cannot be openly mourned, or socially supported. Essentially, this is grief that is restricted by “grieving rules” ascribed by the culture and society. The bereaved may not publicly grieve because, somehow, some element or elements of the loss prevent a public recognition.

Some of those “elements” might include a “relationship that is not socially recognized” (for example, partners in a lesbian or gay relationship), or a manner of death considered to be “fault” of the deceased (AIDS, suicide, drug overdose, etc.), or the simple fact that the deceased was not the legal spouse of the person left behind…

The description continues:

Because of the lack of social recognition, disenfranchised grief is a hidden grief and this “hiddenness” can paradoxically increase the reaction to loss…It can intensify feelings of anger, guilt and/or powerlessness, thus resulting in a more complicated grief response. Rituals may be absent or the grievers may be excluded from rituals…

Disenfranchised grief may lay hidden for years, only to be triggered by later losses…

That about covers it, doesn’t it? There were all manner of bereavement support groups around at that time, but none, as far as I know, were for AIDS Caseworkers Who Fell in Love With Their Drug-Addict Clients. There wouldn’t even be a good acronym that you could make up for that.”