THIS BOY WITH HIV

19th Century:  Pratt:  clothes and hair make the man.

1950's   A few generations later.

2016  Denise Juneau is running for the US Senate.

Her father was in one of my English classes in 1962.

When Colonel Pratt decided to make whites out of Indians, he had the idea that if they were cleaned up, given proper haircuts and clothes, and made to mind their manners, that would do the job.  Likewise, people tend to think that if they take a feral boy off the street who has survived on his own for most of his life and do the same cosmetic things, the boy will be grateful and become just like the savior.  But first the rescuers want his diseases cured or at least addressed to the level of chronic and noncontagious.  The problem is that the change involved in all that -- changes in habit patterns, internal molecular loops, and just general ways of being in the world -- are too much to address while still hungry, shamed, guilty, terrified, and essentially alone.  These are matters of identity and losing one’s identity will only cause panic and rage.  So it becomes a loop: I won't help until you want to be like me. 

One thing at a time.  Starting to take AIDS meds -- even assimilating the fact of being infected and figuring out what it means (esp. if you’ve been told it’s a death sentence) -- might be sort of down the list.  The FIRST thing is a trustworthy human contact when you don’t even know what that feels like, so you never look for it and maybe don’t appreciate it when you get it.  The person contacted must not judge.

Liz Taylor was not inclined to judge.

Consider that there are plenty of grownups who have the same problems as listed above; even the ones who live in “natural” African villages might not have a trustworthy human contact, which might account for ill-advised out-on-the edge sexual behavior.  There must be a high proportion of incarcerated people with no idea how to guide their own behavior and who will die before they ever find out.  There must be people who function only with constant professional support.  And somewhere there must be people who have their boundaries established, keep within the limits of their bodies and minds, live in a supportive community, and still (or maybe consequently) have more energy and insight to offer others.  The "nice" people still might catch AIDS.

The tragedy is that most diseases that can be addressed to the point of becoming chronic must do so in terms of behavior much more complex than taking a pill.  Just taking a pill on time and in the right amounts, just facing the diagnosis which is no longer death but still a lifetime ahead of monitoring and paying. Paying. Getting the meds (even at a free clinic), are an ordeal that presume no competing activities, like a job or even school.  It means stigma, that blood sucking leech.  One is forced into communities of oppression in the name of monitoring one's health, meaning constant blood, urine, fecal and semen monitoring, all of which are usually private.  They expect gratitude or at least obedience.  If you're not paying, they don't feel obligated to
provide privacy or nice manners.

It seemed so simple.

But not all boys who behave badly have HIV.  Not all nice boys who have done very little to break rules will escape HIV.  It’s a virus, an opportunist, and skips through the land like a forest fire, creating a mozaic of infection that is undetectable at first without deliberate testing.  It will be years before the HIV impact on the body may be detected, long after the point of contagion could be identified.  Only recently has it been possible to reduce the HIV viral load below the contagious point.  The good news is that what will control HIV will bring the body into homeostasis and good-enough health that will address a lot of basic needs.  The bad or at least daunting news is that some turnaround in emotional life and the personal power -- that even a boy has -- must be brought into alignment.  Art and community can do the job.

I’m the last person who ought to write about community.  I’ve threaded my way, trying, rejecting, pandering, finding a powerful protector, getting official certification of value, learning high theory and analysis, taking diagnostic inventories, querying family, making natural categories, embedded observing, and so on.  I’ve got bibliographies, actual books, saved downloads, printed out manuscripts (including typed and xeroxed), scraps of memoirs, genealogy charts — on and on.  But I still rarely go through a day without being mad at someone for not understanding me and what I’m doing.  I’ve studied organizational design and thought it was brilliant, but can’t get my house organized, or my time organized beyond writing most of the time.  Organizing cats, of course, is hopeless.

David Barr, effective early activist

But I have a kind of virtual community that includes fictional characters, figures of dream, real people I have never met, and the population of this town and area who all greet me by name though I can’t remember their names.  Some of these people I've known for half-a-century.  Boys with HIV are part of that world, some of them former students who are dead now.  Often the ones who were the best writers, the ones who ventured to the edge.   Natural leaders.

Terrierman, who blogs and lives near Washington DC, rarely recommends a movie.  This time he said, bluntly, “Sit down and watch this!”  It’s a movie called “Human” and it’s on YouTube in several versions, some an hour and an half long and some short.  Here’s the trailer.  http://www.human-themovie.org   This is or ought to be everyone’s community, both human and landscape-sized.  This ultimate community does not know itself and so this movie becomes vital.  Everyone speaks in his or her own language but with sub-titles.  Some are silent.  All are eloquent.

Francine, "Human" (from my cohort)

Sub-groups could create video testimony like this, maybe not so fancy.  But a place like here on the high prairie has as many wise and lived-in faces, as many love affairs, and as much mystical landscape as this film.  Our girls ride their ponies fast over long ridges with mountains in the background.  (That's my favorite section.)  These days cameras are easy to operate and there are local businesses that produce local vids. It only remains to think of it.

But this post is about boys with HIV, esp. HIV acquired by doing criminalized and desperate things.  They cannot show their faces because the stigma will follow them — faces are like fingerprints these days, the iris of your eye is a code that can unlock doors.  But anyone can record themselves if they have simple equipment and — more than education — the motivation.  This is the conviction that created http://real-stories-gallery.org/node/1143  and the groups that have derived from it (Cinematheque, Show Me Your Life, Smash Street Boys, and Shatter Boys UK).  These are ways to create community networks that wrap around the planet.

Boys are the demographic most easily discarded, esp. boys considered dangerous, contagious, destructive, and obstinate.  Maybe gay.  First we render them invisible because they are scary, then we throw them out of schools as ineducable, then we don’t allow them on the job market which almost forces them to join the sub-culture of the forbidden.  They have nothing to sell but themselves.  Luckily, that’s an infinite resource, constantly renewed.