- My role as a gay AIDS activist was first featured in a special report on AIDS in the Kansas City Times, July 8, 1989.
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).
- Talking to a television reporting at an ACT UP/KC demonstration outside the FDA, demanding faster access to AIDS drugs, circa 1989.
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 campaigned as the first 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.
- Covering an ACT UP demonstration for the News-Telegraph, a regional gay newspaper, in the early 1990s.
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.
7 Responses to “Still angry after all these years”
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I really have to wonder why you are so afraid to post my comments?
Seriously, I also have an idea. Please think before just reacting and saying “no”.
How about we start a “Point/Counter Point” type posting every month? We could work out the details. I think that if you and I could act like adults and work together, we might just be an inspiration for both sides. We could have a monthly topic in which we both post our reasoning on certain topics. Not only would we show that two people with differing views, who do not really like each other (although we both should admit that we truly do not know each other) could work together, perhaps we could stimulate discussion. Afterall, we all should admit that true discussion between the two sides is non~existent!
You blog does not generate comments and even QA.com only gets sporadic discussions from the same people.
What do you say? Could we act like educated adults and do both sides a service? I will be posting this offer at my sight to hopefully persuade you to say yes. (Is it ethical for me to put such pressure on you? Maybe not, but I have gone further to persuade cuties to sleep with me…just kidding…let’s try to keep some humor in this as well, shall we?)
The ball is in your court, Jonathan. I look forward to hearing from you.
Sincerely,
J. Todd DeShong
Todd,
I have thought about your suggestion and can only find it amusing.
First, I would be at a disadvantage, as I could never be certain which of your multiple personalities I was debating.
The Todd that has called me a liar and a bitter old queen?
Or perhaps the Todd who thinks I am stalking him from the IRS?
Why would I care to engage with the Todd who is so vastly superior to me intellectually, as he has stated?
What about the Todd who doesn’t remember my name, or the Todd who doesn’t abide by the most basic guidelines of blogging etiquette?
How could I dignify the Todd who introduces sexual innuendo into so much of his writing, and then screams “homophobia” like a nelly queen when an author points out that some gay men are sexually obsessive?
I did not start my blog to debate or argue, and no one reads yours, so what would be the point?
Here is my counter-offer: I would be willing to meet you for a cup of coffee at a neutral public location where we can sit across the table from each other and discuss our differences eye-to-eye. No cameras. No recorders. No public observers. Just you and me. Like real men, Todd. If you’re ever in Kansas City, let me know and we can set a date, and I will do likewise the next time I visit Dallas.
Very eloquently put, Jonathan. You are a sage and wise writer on this topic . I really do find inspiration in your posts – they are enlightening and intelligent . I look forward to reading them for a long time.. It is relief to read some passionate political discourse on the mantra of the ‘single exogenous causative agent hiv for – aids’, a quiet questioning of this wild lavish guessing game – in the petri dishes – that has us prostrated in the mire of our mortality -at the pathogenic cellular level – with a good wallop of old fashioned morality and hygienics …nothing on external environmental factors , toxins , acute sustained stress , genetic factors , nutritional factors ……all these relegated to the back benches , understudies in the wings , shadowy misfits , far too banal and boring to compete with the pharmacorp “chemicular biologenics” of the lab chameleons . There are many – aids , many roads to healing , many medicinal systems to treat the manifestations and associated illnesses , as well as those not associated at all. To tell people that there is only one treatment , no cure , that it is proven indefatiguebly to be the case , an absolute truth- the thirteenth commandment- is bordering on obscene. I feel this as a woman , with no hostility to LGBT culture – but growing anger at the way it sells out to this paradigm of aids as if it were some kind of war wound for being ‘differently perceived’ or a kind of inverse pay off for the ridicule and discrimination LGBT have put up with from hetero culture, or fear of saying ‘ screw you – this is not our doing – as it is still perceived to be – that unspoken consensus in white west world ‘.I look at both from the outside , as a girl/woman suspended in the mothership mode, estranged from sexual intimacy by choice – political protest, symbolic,in kinship with my sisters in so many countries who are in bondage to this il logic and wait in hope for safe passage to polyvalent thought on this matter.
You are giving me a run for my money in terms of eloquence, Julianna, but thanks for the kind comments.
People may not leave comments …but I think they do read …..write the book guys – a legitimate PHAIDON style BIG BOOK on dissidency as a response to dogmatism. NIH have funded studies into other medicinal systems , the Swiss Statement debunks the rhetoric on infectiousness (as long as you’re medicated – ‘forgeddabout’ “resistance transmission hysteria”..) the concurrency studies at Vienna pose questions about so called HIV transmission + promiscuity , and we go quietly on the cross application of HAART – no aids or HIV needed – to treat MDR herpes, cancer, CFS, non HIV infectious disease = parasites indigenous to tropical and toxic environs and whats next..? We do not have a single agent HIV, and we are not at all times infectious with HIV, any more than we are with Flu. If there is a Syndrome , it begins long before we sero convert and if the HIV test is anything its a signifier , not proof of HI virus, but only signifier of potential disease process that could have been endogenous – that could be reversed and dare we say it ‘cured’ in many cases. At the time of diagnosis that is when real treatment should begin not years later based on a numbers game , in a lab . If we looked to other medicine systems – we would be doing this where there is acute syndromic aid or systemic toxicity – in Chinese Herbalism as one traditional example. Instead we are told to wait that there is nothing we can do – publically funded – because there is only HAART, we have only HIV , and only toxic options are relevant . I dont accept this. Our health is being sold to the highest bidder, but we are paying the price.
The notion that HIV exists is a farce.
When energy is not able to move freely through your chakras (energy centers in the body that generate your physical form), illness can result. Negative thinking causes blockages in energy moving through the body which can lead to physical manifestations of disease in your body. Illness is the Universe within letting you know that something in your thinking is wrong. You are not in a consciousness of love, forgiveness of self and others, compassion, and faith and trust in God, who is the Source of all that is good.
I remember the day I gave myself the bodily symptoms of disease that are typically referred to as being HIV positive. No one gave them to me. I gave them to myself. Today, I have no symptoms of so-called HIV, nor, have I had any symptoms for many years. In my heart, I know that I will never be ill in that way again. I now know, that diseases find their victims, just as mold finds bread, infection finds wounds, and germs find filth. They proceed from the ethers.
[Editor’s note: In the interest of keeping comments succinct and brief, the rest of this comment has been published as a guest post here, or visit the author’s website.]
Jonathan ..hope you are weller. God . What coffee was brewing when I wrote that. Just cleaned the carpets . Mulling on old posts.