It was a strange figure – like a child: yet not so like a child as like an old man… Its hair, which hung about its neck and down its back, was white as if with age; and yet the face had not a wrinkle in it, and the tenderest bloom was on the skin…
“I am the Ghost of Christmas Past.''
``Long past?'' inquired Scrooge…
``No. Your past.''
Charles Dickens, A Christmas Carol
I’m old. Perhaps I’m too old and jaded to play in the AIDS Industry anymore.
I’m tired. I tired of an industry that is fractured; I’m tired of governments and health authorities that force groups to compete for crumbs and table scraps; I’m tired of the increasingly complicated politics that infest the “movement”.
I’m nostalgic. I remember “the shadows of the things that have been” – days when things were less complex and the “movement” wasn’t eating its young with such phenomenal regularity. A time when we were activists and openly spoke against injustices perpetrated by government – those days when “advocacy” wasn’t a four letter word and verboten. Days when we weren’t constantly branding and re-branding to suit social media – before marketing firms and communication experts were required to ensure we were relevant.
I’m disheartened. The voices of people living with HIV have been usurped by those who know better: the professionals and panels and institutions that allow us to have what we have. We have an illusion of control over our lives, but in truth I think that the Sword of Damocles is precariously hanging over our collective necks (criminalization has shown us this). I’m disheartened by the dance around language about who and what we are as people living with HIV: that we do not truly accept each other “where we are” and that we use political baseball bats to beat each other up should we disagree. There are tacit rules we all must follow lest we be seen as the “wrong kind” of person living with HIV.
And yet, with all that, I find myself in tiny oases of people who are genuinely involved and authentically compassionate. These are the few that really understand “community” – not the faux community created by governments and health authorities, but rather the community that engenders acceptance without restriction or expectation. Among these people I find no pretentiousness, no concern for the outward appearance of things, because they seem to inherently know that the only thing that matters is the soul of a person, of a group or of a community. They seek connection and relationship, not administrative control and power.
There is hope. It can be obscured by the haze of governmental pronouncements and societal stigma, but it is there. We need to make sure that light does not go out – and it can be snuffed out like a candle flame. We need to raise our voices again, the way we did so many years ago, or the “movement” will be only a phantom and the new thing that emerges will forge chains like Marley’s Ghost dragging them along for eternity. We need to replace our fear of speaking out with the bravery in dissension that we once possessed and wore so proudly.
So, what is our business? As people living with HIV, no matter our politics, income, sexual orientation, gender or age, we are all a part of something significant, a story that must be told over and over and very loudly: a story that has nothing to do with administering programs and sitting in endless meetings and calculating statistics and creating cannibalistic bureaucracies. It is a story about us. Charles Dickens understood this…
“But you were always a good man of business, Jacob,” faultered Scrooge, who now began to apply this to himself.
“Business!” cried the Ghost, wringing its hands again. “Mankind was my business. The common welfare was my business; charity, mercy, forbearance, and benevolence, were, all, my business…”