I still don’t remember whose ACT UP party it was or for which demonstration I was in Washington D.C. What I do remember is that it was the only time I ever met ACT UP founder, Larry Kramer. Despite all the horror we were experiencing then AIDS activists did occasionally live a little by taking time to celebrate the extraordinary successes we made toward ending the AIDS pandemic with the extraordinary people involved.
The reputedly obnoxious founder of ACT UP was far from it that night. Both he and I were in good spirits so whatever demonstration we were celebrating must have gone well. I remember, half jokingly, saying to Larry that ACT-UP needed a song or an anthem. After all, French peasants had the Marseilles, the Bolsheviks had The Internationale, even the Allies used Beethoven’s fifth to represent victory during WWII. So why not a powerful yet poignant anthem for ACT UP to help move those still on the sidelines into action against the pandemic.
Larry seemed to favor the idea, or perhaps it was the wine and beer or whatever we might have been drinking. I don’t recall if that night we came up with any music that would make a suitable anthem. Perhaps it’s not possible for music, or art or literature for that matter, to appropriately represent the horror and death of those days, the desperation of our struggle, and the courage we summoned up in fighting to overcome it all.
I recalled that night in D.C. recently after discovering the song “Naughty,” from Matilda, the new Broadway musical based on Roald Dahl’s book on children in rebellion. “Naughty” is sung by the precocious Matilda, the parentally abused and oppressed heroine of the show. The irrepressible waif kicks and punches her way through it declaring:
Just because you find that life’s not fair, it
Doesn’t mean that you just have to grin and bear it.
If you always take it on the chin and wear it,
Nothing will change.
Even if you’re little you can do a lot, you
Mustn’t let a little thing like ‘little’ stop you.
If you sit around and let them get on top, you might as well be saying you think that it’s OK,
And that’s not right.
And if it’s not right, you have to put it right.
But nobody else is gonna put it right for me.
Nobody but me is gonna change my story.
Sometimes you have to be a little bit naughty.
More than twenty five years of direct action and civil disobedience by AIDS activists have resulted in many “changed stories,” many saved lives. That is at least in some parts of the world. For about half of the more than 30 million with HIV with no access to treatment, HIV infection remains a death sentence. Even with recent breakthroughs such as Treatment-as-Prevention at the ready, containing or ending a pandemic that has already cost 32 million lives won’t happen if too few make the effort, as Matilda sings,“to put it right.” Even for the richest country on the planet, budget cuts and austerity mean we may miss the opportunity of ending AIDS anytime soon in the U.S., never mind ending the pandemic in Africa or Asia.
Do activists still have the power to effect enough change to end AIDS? One generally unknown fact about ACT UP was that we were never an enraged, law breaking, jeans and t-shirt clad army of tens of thousands. At our peak in the early 90′s there were probably about one or two thousand regularly committed members worldwide. ACT UP Boston had at the most about 70-80 people attending its regular Tuesday night meetings in the Back Bay. Many ACT UP chapters were far smaller. Yet they took a stand and had a significant impact. Like Matilda, ACT UP never let “a little thing like being little” stop us.
Fortunately revived ACT UP chapters are now benefiting from the input of a young, smart second generation of AIDS activists. These new Matilda’s are resolute in their belief that direct action can still overcome the persistent scientific, political and economic obstacles to ending AIDS. Despite all the progress that has been made it is still not right and we “have to put it right”. Even if it means being “a little bit naughty” like Matilda by acting up and fighting back to end AIDS.