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Stop Bludgeoning Young Gay Men with Our AIDS Tragedy

| 19 Comments

Lesley was my closest friend to become sick in the 1980′s, and he fought bravely until his death from AIDS. Today, there are little rituals I have to honor his memory, and I often write about him, the first of many friends lost to the epidemic.

 

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But there's something I will not do. I will not dig up Lesley's body and beat young gay men with his corpse. Lesley didn't perish so I could use him as a scare tactic. He wasn't a cautionary tale. He wasn't a martyr. He was a man with the same passions and faults as anyone else, and I won't use his death as a blunt instrument.

 

Plenty of us are more than happy to rob graves, however, in an attempt to frighten gay men into acceptable behaviors. This kind of horror-by-proxy happens all the time. Concerned but misguided gay men of a certain age hear whatever the latest HIV infection rates are, and they pull the AIDS Crisis Card.

 

"If their friends all died like mine did, maybe they would think twice before having sex without a condom," goes a typical remark, drenched in self pity and tenuous logic.

 

This statement misrepresents our lost friends and oversimplifies the state of HIV today. It projects our grief in the direction of those who bear no responsibility or resemblance to what we experienced. It subtly blames our departed friends for their mistakes, and then tries to equate them with a new generation of gay men who are much too smart to buy into it.

 

So frozen in time is our victimhood, it hardly allows for the facts of the here and now. Young gay men are more aware of HIV than my generation ever was. They simply relate to it differently, having come of age since the advent of successful treatments. Asking them to fear something they have literally grown to accept is as realistic as asking them to perform "duck and cover" drills in case Russia drops the bomb.

 

To view these young men and say, in effect, "if only you saw all the death that I saw..." is a wishful fantasy that disturbs me on all sorts of levels, and it says far more about us than it does about them.

 

I understand these attitudes come from a place of complicated emotions, ranging from grief, primarily, to our own shame or guilt over dodging a bullet -- and it may come from a sincere need to share our experience with others. The punishing tone that often accompanies it, though, isn't going to win the respect or investment of younger men.


I take our community history very seriously. I've written a book about the dawn of AIDS in Hollywood, have read And the Band Played On more than once, cheered on the activists in the documentary How to Survive a Plague, and can't wait for the release of Sean Strub's upcoming AIDS memoir, Body Counts. There is enormous value in preserving our history -- and in recognizing that many of us still carry trauma born of that time.

 

Community advocates have stepped up work to help us process what we went through a generation ago. Post Traumatic Stress Disorder (PTSD) is a very real phenomenon for longtime survivors, and excellent community forums have been mounted to explore these areas by the Medius Working Group in New York City and the Let's Kick (ASS) AIDS Survivor Syndrome" project in San Francisco. Hopefully, other cities and LGBT organizations will follow suit.

 

That important work is quite different, however, from allowing our past to blind us to the present. When we raise our finger and say in a voice filled with foreboding, "people think you only have to take a few pills and that's it," we are denying the actual experience of a lot of people with HIV. For many like me, taking a few pills a day is, in fact, the only impact HIV has on my life. Research suggests I will live a normal lifespan and am more likely to die from cigarettes than HIV. And I'm not going to deny all that in order to advance a fright-show storyline that isn't my experience.

 

There are young voices telling new stories, thankfully. Gay writers living with HIV such as Patrick Ingram, Josh Robbins, Tyler Curry, Aaron Laxton, Robert Breining and the irascible Josh Kruger are peering across the generational divide (I have HIV antibodies older than they are) and they seem bemused. Their blogs suggest a post-AIDS life of full engagement and purpose. I consider this progress. If their lives (and writings) don't include burying friends or serious health concerns, wasn't that our goal all along?

 

Our AIDS tragedy mindset isn't simply an annoying aspect of our social lives. It has actually stood in the way of embracing exciting new developments in HIV prevention.  New understandings of what it means to have an undetectable viral load, or the breathtaking breakthrough of Pre-Exposure Prophylaxis (PrEP), have been unfairly maligned not because the science isn't convincing, but because we're too attached to the mythology of condoms. We idealize their usage and efficacy, when nearly half of gay men are not using them consistently and never have. Gay men who don't use them, if you follow this thinking, are doomed heretics unworthy of new prevention strategies. Let them eat cake.  Just don't waste money on PrEP.

 

Perhaps, in the end, we are simply victims of our own success as advocates. We successfully entrenched the immediate, mortal danger of HIV, the shameless inaction of our government, and the profit-driven, opportunistic role of the pharmaceutical industry. Anything that veers from that narrative, especially for those of us who lived it, feels like betrayal. Yet here we sit, in an age that confounds so much of the horrific truths of decades past.

 

The 1980′s are history. They are not a prevention strategy. The war as we once knew it to be, the one Lesley and so many others fought so valiantly, is over.

 

May they rest in peace.



Mark on:

19 Comments

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Comments on Mark S. King's blog entry "Stop Bludgeoning Young Gay Men with Our AIDS Tragedy"

Mark, You make a very valid point. I have been one of those who felt that the young ones have not been intimate enough with thier elders' grief. I have felt the need to project that grief as some sort of teaching mechanism to my younger brethren. I must admit; however, that I've seen it as a failure on the elders part to share our stories with them. "These kids today" don't know of the Quilt. They don't know about Queer Nation and the fight in the streets against the ignorance of the Reagan administration. Why??? because we elders have failed. The death of the gay bar as the heartbeat of the LGBT community has oft been my lamentation.
Your observations have me rethinking the whole mess. 30 years later, "these kids today" don't need to wear pink triangles. Why haven't I seen this as a good thing until right this very minute??? The romanticism of the gay bar just died in my head. After all, the need to be intoxicated is no longer necessary in the gay dating world. And...in fact, was actually part of the problem in the first place. We HAVE overcome prejudice. We HAVE integrated the LGBT community into every other facet of our American experience. "These kids today" have realized what we elders have been fighting for all this time. I GET IT!!!!! The jealousy I have for them is transparent now. We, elders, should be seriously proud to see the results of our struggles.
Thank you for your honest observations, Mark. I learn something new everyday. Its time to take my pills now, and enjoy my undetectable viral load.
--Daniel Jezek
Eugene, Oregon

How fitting Mark in your writing of healing from PTSD for I am too am aware of the pain, grief and overcoming the guilt at times of being alive. How fitting in the upcoming weeks of World AIDS Days that we can bring remembrance to the veterans who pasted and yes may they rest in peace to be remembered for their love to us still today in the war to survival with joy and peace among the trauma within the past. World AIDS Day is more than Gay men to me in an inclusiveness to bring focus on poverty, hungry, and lack of knowledge for many in our HIV communities. So I agree the fear of Full-Blown AIDS must be enlightened in the concept of HIV battle that brings forth Hope to begin the Healing, I believe, but we should never forget the comrades of courage and hope that helped brings forth today's advances, and we must not be white wash the past either, in order for many to avoid AIDS or overcome it with the community's help. I believe.

I respectfully disagree. I read the article twice and slept on it before commenting. The friends and colleagues I asked about it agree that we need to keep the awareness up so that the crisis does not repeat itself. Just today I saw another news article about HIV infection rates going up again.

People who don't remember what we went through in the 80's and 90's need to know that HIV is no party, the medication causes chronic conditions, and the costs associated with the ARVs is astronomical. Many of the gay young men in my chorus of over 100 men have no clue what they are in for if they become HIV positive. This isn't speculation; I asked them.

Even if everyone could afford ARV drugs, people in the US are still dying from HIV and AIDS for various reasons including lack of healthcare access, stigma and addiction.

What is the leaned author's suggestion as to how to address HIV prevention with young adults and those coming of age? One's personal experience I still feel is very effective.

I thank the Great Grand Father's spirit today for the blessings of my eye's opening and for my best friend, mate and lover. I thank the Father for the companionship and learning to stand tall in my walk and love another day with peace and joy of my heart. I thank the Grand Father for all in Poz.com, including you Mark, for your courage to express your heart and joy for life to keep speaking truth to power. I am thankful for my calling to love and be loved today and forever. I am grateful to the Grand Father for my elders of now and past. I am thankful to my country or the USA and the government to include all in service of public health. Yes, I thank God for all the Presidents of Past and the one of now.

"A merry heart does good, like medicine, but a broken spirit dries the bones" proverbs 17:22

I pray for more to come into a merry heart of good medicine as we heal from the past and become stronger in our unity to love one another in action and deeds.

I come from the middle Generation Y, between you GenXers and today's Millenials. Hard to identify with either group. Condoms were religiously drilled into our heads and while we missed the hedonism of the 70s, we also avoided the career discrimination and closet mentality that scarred your generation. So I feel like the ignored middle sibling who studied hard, did well in school, stayed away from drugs, found success in career and relationships, practices safe sex, but is overshadowed by his drama queen older brother and younger slacker brother. The big obstacles I see now are access to free or affordable judgment-free healthcare. For all the money going to ASOs, good luck finding: 1) free walk-in anonymous rapid HIV testing evenings and weekends; 2) free hassle-free PrEP; 3) free Hep A/B and HPV vaccination.

Disagree. We must do what we can to educate the younger generation I saw this on newyorker.com and thought you would like to see it.

What Young Gay Men Don't Know About AIDS : The New Yorker
http://www.newyorker.com/online/blogs/comment/2013/11/what-gay-men-have-forgotten-about-aids.html

Aid is a disease. It is a horrible disease at that. It is not something that you can walk away from. I ask the question - “Is it something you can prevent?”. Are younger people aware of the potential danger involved in just having sex? Some yes, others no. Do people take dangerous risks in life, even when they know better? The answer is obviously yes. Just look at abuse of alcohol, drugs and cigarettes – whatever habits are clearly not good for them. Why do people do potentially destructive behaviors? Maybe it is because they do not value themselves or their lives. Or the perceived benefits outweigh the consequences. So maybe it does pay to make people aware of the consequences of risky behavior. On the other hand you have to get them to also care about and love themselves.
So I feel it is important to send a compassionate message, of love and caring, not one based on fear and condemnation only, but also to paint the idea that carefree and reckless behaviors can have dire consequences.

Thanks Mark - this has been making the rounds lately and always makes me cringe as a young guy living in the the "shamed" culture. These scare tactics are better at spreading stigma than they are at getting guys to wear condoms. I used to fight/convince/chastise my tops to put one on (and won that fight often) but they did have a compelling counter argument...it was just more fun. Lying about that reality just leads to silence instead of open dialogue. Now we have PrEP which has its downsides but is too readily discounted as encouraging unsafe behavior. That's too late, that's already happening. So we can moralize or we can prevent transmission based on the reality and choices that are out there. I'll take the latter.

I'm gay man living for the past 30yrs. I find parts of your essay insulting. I find it hard to believe that you reinforce the "stigma" of living with the virus! Why would you so blatantly dismiss our role as activists. The curse of stigma is still with us. Prevention is a losing battle, period. However, where is the danger of exposing POZ young men to the facts of the AIDS crisis?
The "AIDS Generation" coined by Peter Staley, has a profound message to share with the younger generation. Myself, formerly on staff at GMHC, has learned to accept that out of six men, if one person benefits in some way from our history, then we have accomplished maybe, saving one life. Hopefully, the younger generation (highest rate of transmission), won't have to replay the devastation that took so many friend's from us.
I believe our history of civil disobedience, activism and treatment guidelines, (ACT UP NY) see, "how to survive a plague "' will resonate loudly through the young gay population.
How can you claim the war is over? It's been over since the "same sex marriage" movement took priority over the war on AIDS.
We are now trying to help long term survivors over 50yo. deal with isolation, fears and memories...or are they nightmares?
Don't invalidate our history...we were invisible for so long...I won't go back to that,
No one should....and that's our job this time around.
T. McCarron, age 62. Diagnosed in 1986...infected 1983.

Yes - scare tactics do more harm than good. However, I find that young people who have only known a world WITH HIV can really benefit from knowing the history of our community's experiences with the disease. It also helps us old-timers to process the loss and struggle in new contexts.

Certainly our history does not need to be used to "dig up corpses," but we do need to do whatever we can to build communication and understanding between the generations. When I was a child in the 60s, I never truly understood why my father was so vocal against war and violence until I learned about some of his terrible experiences serving in the Air Force during WWII.

In the same vein, helping young gay men to understand one of the seminal events in our lives can perhaps empower and motivate them to fight for a more just world that cares about all its people equally. If we knew back then what we knew now, we might have taken action sooner as a nation.

Tim, generation gaps aren't limited to straights, and that's what we have on our hands. Older gay men, like you and me, have lived with the virus for decades and are incensed that younger gay men aren't alarmed.

Our trauma is showing, but that's not a prevention strategy. Your contention I am dismissing our history or role as activists doesn't exist in my essay. You're projecting fears that are best left to another blog posting. I value our history and say so in the piece. I honor my lost friend in the first paragraph.

What I also say is how important our history is, and how much work needs to be done to address PTSD among people like us. But, I object to using our history as a scare tactic, which never works.

We, as aging men with HIV, have our own set of problems. Can we allow younger gay men to have theirs, and trust they will make the best choices they can, as we did?

As an African American with h.i.v,who benefits from the activism of gay white males in the act up movement,young gay men need to be aware of the high price that was paid for aids treatment,living with h.i.v. is still a struggle,it's not a death sentence,but its life altering,one of the problems in the black community is not acknowledging,the high price paid by civil rights movement,some people throw away opportunities people 60 years ago black people never dreamed of,so younger gays don't need to be bludgeoned by the past,but your health should never be takened for granted,just talk to someone struggling with h.i.v.

Hi Mark,

I have to disagree with you. Fear can be a strategy for preventing HIV as well as other STI's. Just look at the reduction in syphilis, gonorrhea and chlamydia during the mid '80's to mid '90's when AIDS first reared it's ugly head and people were scared to death to have sex.

I talk to a lot of young people about HIV. I always share the horror stories and show pictures of my friends who have died. It is the only thing that gives their deaths purpose and meaning. At the same time I always share the joy of having lived through an epidemic (because in my small world the epidemic has ended).

I do agree with you that if you are using fear and tales of the epidemic as your main HIV prevention tool for young gay men then you are not going to be very successful. I think of it as drivers ed. It is important to watch those awful films that show the results of bad accidents. But the instructor should spend far more time teaching their students how to drive successfully.

Thank you for this. I am HIV positive and in my 20s. All my life I was bombarded with messages about how awful the disease is. When people with HIV would message me on Grindr I would just block them and not give them a chance. Then I got the disease. I don't want to be an asexual monster or a cautionary tale. Other than a pill I take before bed and seeing the doctor twice a year my day to day life is the same. Why is that so taboo to say? I just wish everybody would be more rational about the disease.

The City of West Hollywood hosted an intergenerational panel discussion on HIV from 20 years ago until now, and 20 years into the future. It seems relevant to this discussion.

One can watch the entire discussion here:
http://weho.granicus.com/MediaPlayer.php?view_id=16&clip_id=2243

If you don't use your friend Leslie--or the thousands of other young gay men who died in the earlier days of the Plague--you are blithely dooming a new generation of gay men to die too. My first husband, a bisexual gentleman who was infected in the mid-80s and died in the mid-90s, was the perfect negative example of gay life back then. No one ever deserves such a death as he died, but that death could've been predicted--and was. I use the story of Kevin to teach young gay people how NOT to live; I teach them to use condoms, to not be sluts, to not engage in anonymous sex--because behavior like that KILLS. Silence = Death, Sir, and I'll be damned if my husband's horrible death will be of no use to anybody!

so how do you get through to them? i don't believe in scare tactics but somebody have to get through to them about this disease

I have ponder the comments and discussion and after much meditation and critical thinking in pray to write this respond. I must side with the young man 20 years old in some sense, living with the seemly Hiv for 28 years, and taking one pill Strilbill a day and no other need for any other medicine and plan on going to do labs ever six months, as in the past, well in the past. I did not do labs for years sometimes or take pills. However, I changed my thinking (that happens when one get older and hopefully wiser) and science is changing, and the drugs are better today than at any time in this AIDS history. So it is just like diabetes to me in eating well, staying strong in spirit, positive attitude and living life one day at a time within my hopes, dreams and aspiration of goals and future works. I like to tell new young folks that are in shook about being HIV to think of HIV like Diabetes for both people with these dieses seem to like a lot of sugar. Thanks be to my Faith and the faithful leadership of past and present, I smile today in hope, faith and love and more action to come I hope..

Thanks, Mark. Some good points you make and some not so good. As a longtime survivor, I have no desire to bludgeon any one -- young or old -- with the terrors of the early days, but I am alarmed at the cavalier attitude of some young guys who don't understand the seriousness of acquiring immune deficiency syndrome. I have chatted with young men online who think that my being undetectable means we can do anything, and they are safe from the virus. Most of my advice to them is about becoming very educated about transmission, learning to play safe and have fun doing it -- not with me, necessarily. I never speak of the angst of the early to late '80s and the wakes, funerals and gross uncertainties and frustrations of the early days. But I want young guys to know that, despite the many advances, there is still no cure for HIV, and the longterm effects of taking meds is somewhere in Lewis and Clark territory. I think it's better to err on the side of caution as advice givers to youth, but avoid any self-pity and wallowing in the past that some of us are prone to. Just good, sensible, scientific, cautionary advice is needed here.

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This page contains a single entry by Mark S. King published on November 24, 2013 7:00 AM.

The Beautiful Sadness of 'Dallas Buyers Club' was the previous entry in this blog.

The Fury of the PrEP Debate and Facts to Win It is the next entry in this blog.

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