I recently unboxed some of the early media accounts of my life as an openly gay AIDS activist in Kansas City. The very first words in the very first article ever written about me as an activist proclaim: “Jon D. Barnett is an angry young man.”
That anger served me well as fuel for many years of social activism, though it ultimately took a toll in burnout and poor health.
Nearly ten years later, when I was diagnosed as HIV-positive, my world tail-spinned and I withdrew socially for another decade. The anger that once drove me was now directed internally against an invisible—and supposedly invincible—enemy.
It was only after the life-changing experience of quitting all pharmaceutical drugs in 2007 that I began to work my way out of my drug induced, self-imposed exile.
While questioning the wisdom of committing to a lifetime of AIDS drugs may be controversial, it is not crazy and there is definitely no malicious intent in telling my story. I simply cannot have the life experiences I have had and keep them to myself.
One would think from some of the reactions I’ve gotten from readers, viewers and even personal friends lately that I am trying to hurt people, though nothing could be further from the truth.
A couple of weeks ago, as I sat across the table from a friend I’ve known for decades, I felt his hurt and his anger as he challenged me for suggesting that it may not be necessary for everyone to take ARVs for life to survive a positive HIV diagnosis. There is more to his story. His partner had just been brought back from the brink of death a few months ago after starting HAART. He was a real-life example of the “Lazarus” effect.
Never mind that it takes HIV ten years or more to cause symptoms, ARVs are credited with restoring health in just a few months! I did not have adequate answers for all of my friends’ questions, nor did I feel that was my job. What was important was that we discovered that we shared many of the same questions, though getting there took quite a bit of effort to overcome the misdirected anger and hurt first.
On my youtube page I have posted a video about the LOTTI study, which found that many positive people can successfully quit their drugs for long periods of time, and possibly even permanently. (I also blogged about the LOTTI study here). The video has received comments from some people involved in “AIDS education”, including a poz man from Portland, Oregon.
In a comment he has since deleted, youtuber gbfowler was apparently frightened enough by the notion of some people choosing to try a drug-free alternative path to recover their health that he felt compelled to counter the message of hope I had presented, warning others who might stumble upon the video that my views are “extreme” and that “99 percent of HIV docs and researchers disagree with [me].” Of course, he is right on both accounts, but the question begs: why did he feel it was so important to warn others of the obvious?
Yes, it made me angry that someone who makes their living pushing drugs onto other gay men would express only fear about any scientific information that offers hope to tens of thousands of gay men—many of them otherwise healthy—who are facing, or have already embraced a lifetime of chemotherapy.
Talk about extreme and dangerous ideas!
The gay community has developed a myopic view of AIDS in the last few decades, thanks in no small part to massive, well-funded marketing and “education” campaigns designed to convince us that we must give up natural sexual intimacy and instead embark on a lifetime of chemotherapy. Self-funded, actually, as the largest non-governmental supporters of most AIDS organizations in the U.S.—pharmaceutical companies—invest in these (marketing) agencies with their profits from AIDS patients, the vast majority of whom are gay men.
Why in the world would I want to challenge this image of the modern pill-popping, disease ridden, latex wrapped gay man?! (sarcasm, for those who need to be told).
Despite what some gay men seem to think, I am not the enemy and if my story or my writing makes some of you feel that I am, it may be a good indication that our communal psyche has been fucked with. I have a long history of fighting for my community. I will continue to fight for gay men until they put my ashes in the ground, which I hope will be a few more decades yet.
There was a time when I organized die-ins to demand faster access to unproven drugs. I picketed the Circle K convenience store that denied health insurance to a PWA—by myself—before founding ACT UP in Kansas City. I ran the first campaign as an openly gay candidate for city council. I co-founded the organization that worked to pass a gay rights law in Kansas City, served as regional editor of one of the largest lesbian and gay news publications in the Midwest, and have received recognition for leadership in my community.
I realize that all of this must sound boastful, and yes, I am proud of my life and my accomplishments. My point though is that I have a lifetime record of promoting and advancing the gay community, not hurting it.
I have paid my dues and I have earned my props. I am not only entitled to share what I’ve discovered since my own HIV-diagnosis in 1998, I am obligated to do so. I have faced down threats to my safety, to my livelihood and to my health.
I am appalled and distressed by the lemming-like behavior of my own community and wonder why and when did we stop challenging the establishment? I do not stand in judgment of others, because it is obvious I have been a lemming in the past too.
I will spend the next stage of my life trying to advance a new message to the gay community. We cannot accept the current terms of the Final Solution, as spelled out by one of the largest segments of the U.S. economy—the pharmaceutical industry and its allies in government and social agencies.
Are we really for sale so cheaply?
I am constantly rethinking my views and my beliefs, and I assume others do so as well. When I was a teenager, I had a religious experience in the Jesus movement commonly referred to as “born again.” When I came out of the closet as a gay man a few years later, I was born again. Again. Since then I have been reborn more times—mentally, spiritually and emotionally—than I can count, and I hope I continue to be open-minded to new ideas and ways of thinking and believing.
I did not come to this place called AIDS dissidence easily or smoothly. It is not a particularly fun or easy place to be. It is not even really a place at all. It is more like an anti-place… a not-place to be. It is all of the space that exists outside of the AIDS meme. (Note: the link may be irreverent, but it does a good job of capturing just a few of the reasons I refer to a “meme” here.)
Lately I find myself struggling to find ways to break through the (fear of) death culture that has snared the gay community the last few decades. Not since I was a teenager have I felt so alone and lonely in how I think and how I feel. Unlike those years, thanks to the Internet I have managed to make contact with a handful of gay men who walk a similar path.
The anger in my life has never completely subsided, it has just morphed into a different form of energy as I’ve learned to co-exist with it in ways that do not consume me. I hope I have learned to conserve my energy and to focus it more intensely where it is needed, as I no longer wish to be a flamethrower, preferring to strive instead to be a torch.
That some people find my words and my work to be dangerous and threatening is reason enough for me to keep thinking and writing and speaking out. I am not trying to burn down the house; I am trying to cut the lock off the prison door.