"If the answer to the problem is a pill, it's just capitalism."
In the week after Spencer Cox's death, friends, colleagues, and activists around the world have pondered his well lived life and untimely departure. Some lamented the trauma of watching so many close friends lost from a disease which seems to arbitrarily pick and choose who lives and dies. The New York Times obit for Cox specifically pointed out:
In recent years he wrote on AIDS issues for POZ and other publications, and founded a short-lived organization called the Medius Institute for Gay Men’s Health, which was concerned with issues faced by gay men as they grow older, among them loneliness, depression and substance abuse.
Mark Harrington, the executive director of TAG, said Mr. Cox himself struggled with an addiction to methamphetamines. Some months ago, he said, a despairing Mr. Cox had apparently stopped taking his medication.
“He saved the lives of millions, but he couldn’t save his own,” Mr. Harrington said.
Many condemned the AIDS activist's use of crystal meth. AIDS journalist Laurie Garrett wrote about her anger at both the increased rates of HIV among young gay and bisexual men and Cox's descent. "First, I am angry at Spencer for falling down the meth rabbit hole that is claiming the sanity of tens of thousands of gay men in America, making them careless about their own health and callous about the well-being of others." Garrett concludes: "So today I am mad at Spencer for falling off all his wagons, gambling with his own life and contracting full blown AIDS. And I’m very angry with those that shout the clarion call of “end of AIDS” in a world that still has no cure for the disease, no vaccine to prevent infection and little more than the hope that millions of infected people around the world will somehow, after they’ve been on these drugs as long as have the Spencers of the gay community, not fall off their respective wagons."
The point is important. Taking a hand full of medications for a lifetime is not an ideal situation.
These medications are not a cure.
Yet the condemnations of meth use smack of a prohibitionist rhetoric which does not tend to work. The lessons of AIDS activism, queer theory and HIV prevention activism suggest that prohibitions are dangerous. We have yet to have a frank approach to HIV prevention and HIV rates are up 20% among gay men. Yet as Douglas Crimp and a generation of HIV prevention activists have pointed out, condemnations do not help us prevent the spread of HIV. They do the opposite. And today, we're seeing the results of this. There is a desperate need for people to have a safe space to talk about HIV, drug use, and risk, in a space free of judgment.
Instead of attacking drug use or drug users, it is worth asking why they are doing what they are doing. Drug use is part of this world and this life. So is stress. The harm of these has to be acknowledged, managed, and engaged. Cox worked to fight HIV and its lingering effects for decades. And this apparently wore on him, as it does for all of us. Those working in the fields of healthcare, including AIDS activism and harm reduction, must cope with a range of stresses, including post traumatic stress and vicarious trauma. Pain and loss are just a part of the work. So are forms of premature death, as a result of HIV, hypertension and even overdose. Faced with a range of challenges, some workers in the field even turn to self-medication. For some, it is about pleasure; for others it is about the absence of suffering. In recent years, several leaders in the harm reduction field have lost their lives as result of overdose. Rather than weakness or pathology, French sociologist Emile Durkheim saw self-destructive behavior as a byproduct of social disorganization and isolation, as a way of contending with a breakdown of social bonds, of alienation. Yet, there are any number of reasons why such behavior becomes part of our work. After all, the stressors of the field are many. Some result from struggles for funding for their organizations. Other more intense forms of stress include secondary trauma, compassion fatigue, organizational conflict and burnout. For some, self injury and self medication are ways of responding. Yet, it worth asking how those in the field cope with harm and pain, as well as the moral questions we face when we see our friends and colleagues suffer. Yet how we as activists strive to create a culture of wellness and support in the fields of harm reduction and human services?
My friend AIDS activist Donald Grove wrote me today about the controversy around Cox's death. A member of the syringe exchange working group of ACT UP, which has gone on to form the core of the radical health field known as harm reduction, Grove lamented the lack of a harm reduction perspective in the discussion of Cox's crystal meth use. After all, we've seen scolds before when dealing with drug use, HIV prevention and negative reports from the CDC. Gabrielle Rotello and Michelangelo Signorile's rants about gay men having unsafe sex started a whole round of Gay Men's sex wars almost two decades ago.
|There was a panic back then. Wouldn't it be great not to have one now?|
When they called for the NYPD to police and criminalize public sexual culture, a group named SexPanic! condemned them as "turdz." The last thing we need is more criminalization of gay men, of drug users, or of social outsiders. We do not need more attacks or counter attacks on drug users, their supporters or foes. Eric Rofes used to used to argue we we do not need to panic every time the CDC comes out with a new report. None this does not get us anywhere. It only supports the coffers of the prison industrial complex. Yet, sadly, some are taking this opportunity to fuel the flames of yet another panic.
As Donald Grove wrote:
I have a FB friend (whom I have never met). A very intelligent younger queer man in graduate studies in Ontario. Part of his scholarship is studying the history of ACT UP, and he knows a great deal about how ACT UP participated in shifting a queer discourse on AIDS, our bodies. He began his post with: Meth = Death.
I responded to him privately, but I would like to share what I said.
"I don't want to sully your tribute to Spencer Cox with a challenge. But I want to challenge you a little.
I knew Spencer very little, although I did know of his troubles. His death was sad, but the crystal part of it wasn't that shocking for me. What was shocking (for me) was that he died so rapidly after stopping his meds. It brought back the horrible reality that the meds really are all that stand between most PLWAs and death. The "getting sick and dying part" has become more distant, and I think sometimes I am lulled into a kind of forgetfulness by the efficacy of the meds. That is a forgetfulness that eases the pain of the 1980s and 90s, but it doesn't change the hard facts of the consequences of untreated AIDS. And obviously, I speak from a position of luxury, living as I do in a country where these meds are available -- even affordable -- for virtually everyone in my life. That luxury is not real for millions of PWAs in other parts of the world, and that luxury is not available to folks living with other life-threatening diseases like Hepatitis C.
Spencer's choices, and his death, remind me that as a disease, AIDS is still exactly what it was in 1983, when I first learned of it. HAART doesn't make AIDS go away. It makes the symptoms go away.
That being said, I want to challenge the black-and-white "We have to stop meth" pronouncement. Stop it how? With what? Anger? Drugs? What tools?
The reason I ask that question is that I have been directly, personally and professionally involved in harm reduction work for the last 20 years. I don't think that makes me an authority on how to properly respond to those questions, but it makes me aware that the dialog in the gay community has been polarized from the get-go on these questions, and not in a useful way. The problems we face with crystal meth are the problems the whole world is facing around addiction to all kinds ofdifferent drugs.
There are no clinical therapies. There is work being done, but it is in the hands of the same pharmaceutical companies that control HIV meds. In the meantime, there are a range of "clinical" approaches that, to one degree or another, all reflect the polarization: people addicted to methneed to be turned into people not using meth, NOW, and WE'RE ANGRY ABOUT IT, and IT HAS TO STOP, etc etc. In other words, the expectations of the outcomes of rehab or twelve-steps are framed around the pain we experience when we witness the consequences of addiction. They are not
necessarily framed around the needs of the crystal users themselves.
In the meantime, groups like Tweaker.org have pioneered methods for embracing men using crystal "where they're at". There are things that can be done for users, can be done with users, can be done by users for themselves, that don't require abstinence and are not part of the polarized dialog of yes-no, good-bad, this-must-stop. I am not against abstinence, but until you get the person to that place, I reject the idea that nothing can be done for them. I am not against permanent abstinence either, but the reality is that even when people reach abstinence, they often fall away from it again. In the meantime, are they housed? Are there doctors who will work with them as they are? Are they in contact with people who can offer them material or spiritual support?
My approach to prevention begins with accepting that someone is using, and will continue to use until they stop. If I want to do something for them, I need to do something for them as they are, not as I would have them be. In Spencer's case, I can tell you that he was mostly shunned. I am not saying that his friends didn't need to set their own boundaries and avoid him. And as far as I know, Spencer's friends didn't shun him as much as he may have isolated himself from them. But he was also shunned institutionally. There wasn't a place where he could go when his addiction was active. There was just: "this must stop!" In NYC, there is no tweaker.org. That's on the other coast.
So I see two goals: one is that we need genuine treatment for crystal, along with a lot of other addictions, and the other is that we need to understand if we want people to heal, we need to remove ourselves from the black-white polarization of the current addiction dialog. Until we have those treatments, there ARE things that can be done, but they don't look like our anger and our grief. They look like working WITH users to identify what well-being means for them today, in the context of their active use, or in the context of their efforts not to use.
There are many people who find what I say repugnant. But I can say "Dead addicts don't recover". It is not enabling to recognize that there is more to any user than their use. I was around before there was a single HIV med. No one said to folks with AIDS: until you address your disease. I can't work with you. Why is it we respond to the disease of addiction so differently? We call addiction a disease, but treat it like a moral failure.
reversing that criminalization."
Thank you Donald. Today, it is time to push for a cure, real HIV prevention based on evidence, and data, and not for more condemnations. The pharmaceutical industry profits from a world without a cure. It is important to remember that.