POZ Community Forums
Main Forums => Living With HIV => Topic started by: wtfimpoz on July 26, 2010, 03:43:54 pm
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No, he didn't really. But the title got your attention didn't it?
There are a lot of things that have gotten me thinking about this lately. Among them: The "Poz Face" thread in the LTS forum. The shift of HIV med advertisements from wildly unrealistic depictions of patients scaling mountains with their bare hands to terrifying captions narrating the middle aged acting elderly and declaring things like "with viragon I'm free to take Adam & Steve to the airport!". The sanctimonious questions repeated again and again and again wondering "how anyone can get this disease in this era when they know how to avoid it".
Reading the Poz Face thread reminded me of the regular public floggings Sullivan has received for that and other articles (notably "sorry I'm not dead yet"). I've always found the meanspirited statements of his detractors (Signorile's "I've just gotta run out and get me some of that hot poz seed" rebuttal) to be vicious destructive responses to claims that aren't really being made. Namely, there is an ongoing FEAR that gay men in particular will start behaving recklessly as soon as they begin to believe HIV can be something other than the hellish nightmare it was in the eighties and early nineties. I wonder however, whether the pendulum has swung the other way, towards scaring us into hoplessness and enabling stigma.
As a recently infected and recently diagnosed person, I can tell you that I absolutely cannot identify ANY unprotected encounters I'd had. My complete STD checkup revealed NO other STDs, save an immunity to Hep B, which my ID doc claims is likely a remnant of vaccinations I received from working in a nursing home while in high school. I don't even have HPV, which I understand to be nearly universal. I don't know how the hell I got it, but if I did in fact get it from unprotected anal intercourse, the lack of other STDs supports my repeated claims that i DID NOT willingly fuck without condoms. Though I belonged to a generation of gay men who were just becoming sexually active when Sully was being blasted for proclaiming his health and declaring "an end to the plague", my behavior...at least as far as I'm aware, stuck with the party line that condoms are necessary and sufficient to keep the virus at bay.
And yet I still got the fucking bug! I'd been tested so many goddam times sinve my first positive result that one testing location politely informed me that further tests "may not be productive". After that, I honestly expected my viral load to come up as a zero. It didn't. "So sorry, its all been a hilarious mistake" is what I've expected from my doctors, as they explained I actually had something less horrifing. Like complete liver failure, or Lupus, or maybe even a whole new STD that is not yet understood. Nope, I've got HIV. Even now, rattling in the back of my head is the notion that there is NO FUCKING WAY I have the disease, and at some point, it'll be admitted that my file has been mixed up with someone elses. Don't worry LTSers, the rational part of my brain isn't going to let me go into complete denial, but this idea is actually flashing through my head.
Why do I not believe this? Because everyone knows HIV is so easy to avoid that only drug addicts and the suicidal get it, and I'm neither. Because I never intentionally took a risk because I've spent the last 15 years hearing NOTHING about HIV treatment but that its going to turn me into an lipo-dystrophic/atrophic troglodyte with brittle bones, cognitive decline and that my future will be mired in poverty & hopelessness. I never intentionally took a risk because the picture painted to me was so fucking hopeless that it made sense to do *anything* but not wear a fucking condom.
And I still tested positive. Maybe someone who fucked me took it off. Maybe I really did get it from oral. Maybe there was some sort of homocidal bent to someone I was with and he swapped out latex with lambskins. Maybe I'm a dumbass and don't know how to get a condom to work with my uncut tool. Maybe I'm some statistical fluke and got it from a "safer" activity. Someone has to be that 1/1,000,000. Maybe I just had a SINGLE stupid moment, as we all have stupid moments, and forgot about it. How often does someone forget their seatbelt when driving to the the closest store for milk? Inevitably, some of these people are involved in horiffic car accidents. How many studies are done on them to determine why they "chose to engage in risky behavior"?
Since testing positive, I've become reclusive, and am considering measures...like a new phone number...to facilitate my reclusion, at least from other gay men, who I deem more likely to guess my status and judge me harshly. I've avoided my friends...because everyone...especially gay men...has it drilled into them that this is a disease for the idiotic, that this is a disease that requires MULTIPLE occasions of risky,suicidal behavior, and that this is a disease which will strip me of everything society really thinks is important, my looks, money and mind. The constant blur of lipodystrophic images, the constant reiterations of the cost of treatment, none of these things were surprises to me after I tested positive and began researching what is in store for me. Trust me, Andrew Sullivan's failure to die didn't encourage me to take any fucking risks. But the responses of those who are offended by him HAVE superimposed an image on my mind, and that image is one of hopelessness.
I'm certain I'm not the only one. Every time one hears about a person my age refusing to take their meds, even dying from HIV, I can't help but think "well, fucking DUH". We've made it so abundantly clear that the treatment is worse than the disease...when it almost certainly is not...that we're now encourging illogical behavior. And for what? Some misguided belief that 17 year olds are counting down the days to their 18th birthday so they can flock to the bathhouse and start barebacking? Or is it just moralism? Either way, its my belief that the pendulum has swing the other way. We emphasize the side effects and failures of treatment WAY too much.
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Safer is safer, and in real life, in the heat n the sweat and the dark things do not always go to plan. It's not like you can do an inspection of microdetails. And yes, there is the thorny question of the very small number of transmission that are probably from oral sex (someone's gonna debate this I know...).
I am sorry you got an HIV+ diagnosis. I kinda like your post, it seems real. Some gay men can be dumasses, but not all of us. HIV closes doors with some people and opens them with others. Personally I have met better people and had better relationships post diagnosis. I totally get the reclusive thing. I don't think it's bad to withdraw, regroup and go off in a new direction.
I got two phone nos, one for people I know and one for people I trust. It's useful.
- matt
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I guess this is a timely moment to discuss a book I'm reading. I'm kindle-ing my way through a book by Tim Dean - "Unlimited Intimacy: Reflections onthe subculture of barebacking". It explores some very interesting concepts regarding HIV and barebacking.
In particular Mr. Dean advances the concept that barebacking may have grown out of the very safe sex culture that was designed to halt the spread of HIV. By encouraging risk management it created an environment in which bareback sex could be deemed safe.
We see this even in poz and neg communities... just visit any gay website and you will see allusions to "neg guys only" which is code for "I advertise safe sex and fuck bare". In the poz community it's a little more blatant with "no rubbers" or "bb only and poz only".
There are some really disturbing passages in this book about bug chasers.... mostly based on a documentary called "The Gift" which I've seen as well. Most of my curiosity is driven by a desire to understand why someone would chase down catching HIV.
Mr. Dean explores some interesting concepts about the underpinnings of cum and the need to achieve phsyical intimacy.
The book is a tough read and is writtten at the PhD level. It frequently uses words I've never heard of and sometimes have to go look up. Sadly, while the work is very interesting, it's probably not very accessible to many people because the writing is complicated. One of my other gripes about the book is that the first chapter is 1/3rd of the book. I believe good writers break chapters into distinct thoughts, not a river of thoughts.
I'm about 1/2 way through the book, and it was $9.99 on Kindle through Amazon. If you don't have a $300 kindle (which I don't) you can also read it on your computer, i-phone, android, or laptop. Kindle keeps your reading location, bookmarks, and notes synch'd between devices which makes it easy to read when you have time. In addition, the e-books are cheaper and you can tweak the type for your own needs making it larger or smaller to accomodate visual preferences.
Moving back to your post, I don't think the presence or absence of STD's necessarily vouches for or condemns behaviors. There is a strong tendency to attach judgement to diseases connected with sex. This is nonsense and should be wholly rejected.
One of the interesting tidbits in Dean's book is his assertion that the word Pornography is mostly used as a device for obtaining buy-in to condemn some act or another. This was based on a study by another academic of use of the word since WWII.
I don't agree with most of what he writes, but I still find it an interesting exploration.
I think if I read between the llines on your post and connect the dots to your other posts you still haven't fully accepted being poz. By accepted I mean moving past the "how" and "what" to planning around it. Most of what underlies your post is the "how" which is directly connected to the "what" with a twinge of judgement and morality. I would again encourage you to deal with the how and what so you can focus on the future without a side of guilt. It's like running with a 50 pound weight.... it slows you down, wears you out, and causes undo agony.
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You don't need theories to explain condomless sex, people evovled to have sex without condoms.
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You don't need theories to explain condomless sex, people evovled to have sex without condoms.
I agree, but it's interesting to know why disregarding safe sex practices has become so common in the gay community.
I'm guilty just like many of us here are guilty of having "known better" and still wound up poz. The book I'm reading is one of the few that dives into the subject matter and offers an educated opinion on it.
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Looking at the UK data there is no convincing evidence to suggest it is more or less common today that 1986. It's been reasonable but inconsistent. Can't see it different elsewhere. That is not a Rolling Stone front page.
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You seem to have a lot of fear to work through - about HIV and about HIV treatment. Also, a major conundrum for you is how you got it.
That said, if I understand correctly, your basic challenge is coming to terms with stigma - the way others judge you and your own judgments about yourself for having HIV.
I personally am concerned that you are isolating yourself.
You personally don't have the power to change people and populations and public opinion that you seem to feel prejudge you. You want to change them because you feel they put you into categories that you can't accept.
Eventually with time you'll just matter of factly state your experiences about contracting and having HIV and see that it doesn't matter much to anyone. Least of all it doesn't matter to people willing to have prejudices against you for having a virus.
Furthermore, you won't add much to the HIV+ community - trying together to fight stigma - by your clinging to the list of categories based on some internal + external values - about how or why people contracted HIV and about peoples sexual behaviour and HIV, generally.
It's just a damn virus, with no morals. I'd suggest maybe Sontag's books -
http://en.wikipedia.org/wiki/Illness_as_Metaphor
Illness as Metaphor - dating back before HIV, which unpacks stigma attached to disease.
and then her book about HIV and stigma:
http://en.wikipedia.org/wiki/AIDS_and_Its_Metaphors
Aids and its Metaphors.
If those are too intellectual as slogs, just hear that I think, personally, one can only fight stigma by NOT overly investing in it, so don't invest in your own and others' VALUES attached to this disease. Just stick to the facts. Most people who successfully live with HIV, I would guess, really enjoy life that is, put HIV into its proper place as a nasty pathogen and nothing more. Only from that place can we deal with the stigma that is not suddenly going to disappear - its as old and human as with any fatal disease, and any sexually transmitted disease.
Values can be discussed as a secondary and more intellectual issue, but its not easy, and should only be done when the basic fact is accepted. Everyone who is HIV+ has contracted a nasty virus and in that we are all in the same boat. Rich, poor, healthy sick slutty responsible reckless, intoxicated, addicted, pleasure seeking, moral, pure, WHATEVER THE FUCK it doesn't matter, it makes no difference.
I would suggest rather than isolating yourself from gays you just matter of factly state your experience, if you feel moved to, and answer questions, if you feel like it. Or just have fun, socialize, fall in love, and deal with the fact that you are HIV+ and it needn't define you totally or even partially.
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I think if I read between the llines on your post and connect the dots to your other posts you still haven't fully accepted being poz. By accepted I mean moving past the "how" and "what" to planning around it. Most of what underlies your post is the "how" which is directly connected to the "what" with a twinge of judgement and morality. I would again encourage you to deal with the how and what so you can focus on the future without a side of guilt. It's like running with a 50 pound weight.... it slows you down, wears you out, and causes undo agony.
On most levels, I've come to believe that I have contracted the HIV virus. Whether or not I "accept" it is a different concept. I fully agree that I haven't accepted my infection, but I certainly believe I'm infected. The post though was more a rumination on how all the scare stories about HIV have become damaging, without actually accomplishing anything, with my previous sexual behavior and inability to deal with my own infection cited as a broad example. It also was intended to touch on the moralistic aspects of the disease. The fact that I listed several reasons for HOW I may have gotten infected, then moved on to the illustration of traffic fatalities, was supposed to illustrate this by conjuring an understanding of the lunacy of asking the victim of an accident "why they chose to pursue risky behavior", as we frequently do when we see a new HIV infection. Maybe I was risky. Maybe I wasn't. "Shit happens" is currently where my feelings on my infection are headed, which is a long ways away from the aghast sense of disbelief I've previously held. I'm personally certain that I was "safe", but the idea that I have to continuously state this, instead of having myself and others understand that "shit happens" is a good example of how the ravages of the disease aren't isolated to the body.
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I'm guilty just like many of us here are guilty of having "known better" and still wound up poz. The book I'm reading is one of the few that dives into the subject matter and offers an educated opinion on it.
And here I think you feed the beast. We all do stupid shit. If you'd been maimed in a traffic accident driving to that trick's house without a seatbelt, would you ever feel the need to admit that you should have "known better"? Trying to understand why gay men make stupid decisions when they "know better" provides added emphasis on the disease when no added emphasis is needed for what is simply a human tragedy. When we discuss how we should have "known better", we enable the moralistic overtones of this disease by indirectly feeding the notion that there is something especially fucked up about those who make bad decisions that result in HIV infection. (edited for fun with boldface)
Virtually everything that happens to us is in our contorl to some degree or other, and the results of things are rarely random or unpredictable. Go tell a foreclosure victim that they should have "known better" than to buy a house they may not be able to afford if the shit hits the fan, you'll get punched...and rightly so. We don't ask why foreclusre victims didn't know better. Its simply understood as a tragedy. Ask why teenage street racers in midwestern cities drive the wrong way at midnight and people shrug their shoulders and say "kids are stupid, they'll grow out of it". If theres a fatality, its a tragedy, not a source of fascination. Ask why gay men fuck without condoms, and you'll get a complex constellation of explanations making us victims of sexual abuse, society and our own self destructive subculture.
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The post though was more a rumination on how all the scare stories about HIV have become damaging, without actually accomplishing anything, with my previous sexual behavior and inability to deal with my own infection cited as a broad example.
The scare stories accomplish a lot - they push people to have safe sex! The stories are not "stories" - they are true!! If people or populations don't have the time, intellect, or inclination to have subtle awareness about HIV - that's their problem. Seems natural.
You had a mysterious transmission. Join the club of the 100 common transmission routes - check: "unkown".
I was scared when I seroconverted because 1) I had fear deep in my mind and body from 80's experiences with HIV AIDS and Death. These fears were DATED, however, and my body and mind paid a big price. Also I carried some fear of carrying a stigmatized identity. So 2) the first value judgement I said to my best friend, the first person I talked to, was "I feel this is bad taste to have gotten HIV". That revealed a lot and it took over a year I would say, to remove that shame of having done something in "bad taste". Good thing my friends and I joked about this "bad taste" in horrible and politically incorrect language for many months and still sometimes. It was like an exocism - making up all sorts of vulgar stories about my identity. This is sorta like the thing gay guys do in this forum when refer to HIV as "popper flu", etc etc - you embrace the ridiculous stigmas. So if they still sting, at least you can laugh about it, and if you see right through the stigma for its stupidity, that's even better.
Its not like the shame was my primary challenge to reconstructing my integrity - the seroconversion was particularly bad and pessimistic so soon other fears had to be addressed. But it would be silly to say shame was not something way deep in my core reaction, right next to fear of death.
Whats your reason for being so afraid of AIDS when there has been overwhelming good news for the last 10 years? Whatever the reason, it's authentically yours.
How did scare stories damage you? Not sure I follow there.
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If theres a fatality, its a tragedy, not a source of fascination. Ask why gay men fuck without condoms, and you'll get a complex constellation of explanations making us victims of sexual abuse, society and our own self destructive subculture.
Here! here! to that
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The scare stories accomplish a lot - they push people to have safe sex! The stories are not "stories" - they are true!! If people or populations don't have the time, intellect, or inclination to have subtle awareness about HIV - that's their problem. Seems natural.
You had a mysterious transmission. Join the club of the 100 common transmission routes - check: "unkown".
I was scared when I seroconverted because 1) I had fear deep in my mind and body from 80's experiences with HIV AIDS and Death. These fears were DATED, however, and my body and mind paid a big price. Also I carried some fear of carrying a stigmatized identity. So 2) the first value judgement I said to my best friend, the first person I talked to, was "I feel this is bad taste to have gotten HIV". That revealed a lot and it took over a year I would say, to remove that shame of having done something in "bad taste". Good thing my friends and I joked about this "bad taste" in horrible and politically incorrect language for many months and still sometimes. It was like an exocism - making up all sorts of vulgar stories about my identity. This is sorta like the thing gay guys do in this forum when refer to HIV as "popper flu", etc etc - you embrace the ridiculous stigmas. So if they still sting, at least you can laugh about it, and if you see right through the stigma for its stupidity, that's even better.
Whats your reason for being so afraid of AIDS when there has been overwhelming good news for the last 10 years? Whatever the reason, it's authentically yours.
How did scare stories damage you? Not sure I follow there.
I think you've missed the point of what I'm writing, probably a combination of language issues and my own writing not being as clear as it should be. My point is that the scare stories accomplish nothing. We're still getting infected. Scaring people only works up to a point where they affect conscious behavior. After that human nature, human mistakes and freak accidents are likely the result of infections, and scaring the hell outta people isn't going to do much good to prevent those causes of mistakes. The atmosphere of fear DOES however diminish the hope those of us who are infected face, and feed the stigma attched to the disease.
My reason for being so afraid of the disease is one of the things i've clearly spelled out: Its the "Poz Face" link on Andrewsullivan.com. Its the constant fear that is instilled in those who are negative. its teh same reason you kept your "deep fear in mind and body from the 80s experience". Its that the message we've gotten, the mindset we're given about the disease, is even worse than the reality. And again, this is problematic because all this fear feeds the stigma we face, it adds to the hoplessness and it manifests itself in fear of testing and treatment.
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And here I think you feed the beast. We all do stupid shit.
Yes and my point is that we eventually conclude that life is more important then fear. We live with risk and accept the consequences.
Mech makes some good points regarding HIV
You personally don't have the power to change people and populations and public opinion that you seem to feel prejudge you. You want to change them because you feel they put you into categories that you can't accept.
Eventually with time you'll just matter of factly state your experiences about contracting and having HIV and see that it doesn't matter much to anyone. Least of all it doesn't matter to people willing to have prejudices against you for having a virus.
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It's just a damn virus, with no morals.
So at the end of the day here are your choices:
- Get stuck where you are at now
- Live according to other people's personal comprehension deficits and irrational fears
or
- Move on with your life
- adjust to your new reality
- Let other people worry about their fears and reject their inaccurate grasp of reality.
I personally am in the latter group. I refuse to allow others to dictate my terms of engagement for life. If you have a problem with my serostatus, it's *YOUR* problem. Not mine. I may have a problem relating to you until you address your problem, but that doesn't change the ownership of the root issue.
I would suggest some counseling.... internalized hatred is never healthy.
Coming to grips with HIV is like coming out again. It's also alot like going to a nude beach sometimes.... .just cuz you are at the beach doesn't mean everyone needs to look closely at the private parts of your person.
Lastly..... some philosophical food for thought.
I am a person who lives well with HIV.
This is far different from being a "victim" of HIV. It took me a while to realize... but we really do define our own reality. Not in the hollywood sense... but in the sense that we have a budget for attention, energy, and outlook and that when we focus wisely on the right things we tend to experience more of these things. If you focus on being sick and how bad your life is, surprise you find all sorts of medical issues. If instead you focus on having a great life and surround yourself with people who accept you as you are, unconditionally you will .... drum roll.... shock... have a great life with great people in it.
Where I think we differ is that you have many friends and are close to your family. I have a handful of close friends and prefer my family at arm's length. I grew up with ADD/HD and so I learned to deal with being "different" a long time ago. I learned that some people just had to be written off and that biological, legal, and authority based relationships were no rain-check. Just because you are my (fill in blank) doesn't mean I have to (like/love/trust) you. That's not a tasty pill, but I think it served me well when I had to re-evaluate life with HIV. I also told most of my friends..... I have better things to do then keep track of who I told what lie to... so I tell them all the truth and fuck it... .they can sort out the issues they have with it.
Privacy is a concept for dealing with the reality that not everyone needs to sniff everyone else's private details .... some don't smell good, and some don't enjoy the attention. If people were like dogs, we wouldn't wear clothes and everyone would run around with their nose up one another's ass.
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And let me say as an aside about the "Poz Face" guy, he doesn't even look that bad. He looks like a gentle old man who has HIV. He doesn't look like a monster. He doesn't look ugly. Frankly, I'm not sure I'd even have thought to peg him as poz if I'd seen him on the street. I'd be even less aware if i were part of the straight majority who typically doesn't even know what poz face is. Parading him(self) around as a cautionary tale...and with a phrase like "Poz Face" thats really all he can be considered...is another example of moralizing the disease. He's not a victim of treatment. He's an old man who has experienced side effects. I work with a few people who have "diabetes face". They'd never post pics of themselves and call it that.
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I didn't miss the point.
You are opening your awareness to a subtle understanding of HIV because now you have it.
There are scare stories, but there as just as many fairy tales - about getting HIV these days.
You argue about the dangers of scare stories but in other threads people argue about the dangers of one pill a day life goes on as normal tale.
Also remember that this forum self selects for a certain mindset. Many people these days might take HIV in stride BEFORE and AFTER transmission. We'd probably never seen them in a magazine as testimony, or writing columns about HIV if they are intellectuals, or posting in this support forum.
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I think you've missed the point of what I'm writing, probably a combination of language issues and my own writing not being as clear as it should be. My point is that the scare stories accomplish nothing.
Actually, the scare stories are a control tactic and work on the same principles that religion leverages. It's a mechanism that leverages fear to change behavior.
Let's compare them:
If you do not tithe, God will be unhappy and you will go to hell! (eternal damnation)
If you do not use condoms, You will catch HIV and die from AIDS.
Both statements have a behavioral goal and use fear of something bad as leverage to encourage compliance. I think we can all agree that death and hell are bad.
It's a weak, but common mechanism. It's weak because it relies on fear which is less powerful then desire.
The desire based statement would run:
You can have the hottest sex if you use a condom with a vibrator ring attached to it.
You will live a long life if you tithe each week at church.
This uses the lure of something desirable to incite compliance.
Desire is always more powerful then fear. Fear is always easier to sell with. Fear, Uncertainty, and Doubt are one of the most common sales tactics. Sales is the vocation of obtaining compliance with a concept in return for compensation.
To "sell" you I have to get you to agree with me, which is where the conceptual compliance is. After that you give me money and I fulfill the promise of the idea with a product or service and thus earn a living.
A deceased friend of mine who's life passions were ministry and psychology once said to me that there are two types of people in life. Those who fear life and those who embrace it. Those who fear life incessantly attempt to control others and their every action. This fits well with the concept of fear as a mechanism to obtain compliance. It's also far easier to produce propaganda based on FUD (Fear Uncertainty and Doubt).
So at the end of the day, if you want to be succesful in sex education you have to answer WIIFM (What's In It For Me) and you have to shatter expectations in the process. That's easier said then done and takes time, talent, and budget. All three are lacking at the agencies charged with this task.
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I didn't miss the point.
Also remember that this forum self selects for a certain mindset. Many people these days might take HIV in stride BEFORE and AFTER transmission. We'd probably never seen them in a magazine as testimony, or writing columns about HIV if they are intellectuals, or posting in this support forum.
Are you stating that unbeknowest to me, there is a vast underclass of ignorant gay men who have chosen to believe that HIV is no big deal simply because medications exist, and that a crippling and regressive atmosphere of terror must be maintained at all times to prevent them from back their asses up to the nearest glory hole and losing track of time?
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Frankly, I'm not sure I'd even have thought to peg him as poz if I'd seen him on the street.
It took me about a year of hanging out with a social group of about 50 to 100 poz guys before I put the pieces together and got better at recognizing it.
Also remember that this forum self selects for a certain mindset. Many people these days might take HIV in stride BEFORE and AFTER transmission. We'd probably never seen them in a magazine as testimony, or writing columns about HIV if they are intellectuals, or posting in this support forum.
I beg to differ. I think most of us here take HIV in stride...... Yes there are people here who need help with various aspects of the disease... but for the most part there are many of us who post on a regular basis and aren't caught up in life vs. HIV.
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It took me about a year of hanging out with a social group of about 50 to 100 poz guys before I put the pieces together and got better at recognizing it.
I beg to differ. I think most of us here take HIV in stride...... Yes there are people here who need help with various aspects of the disease... but for the most part there are many of us who post on a regular basis and aren't caught up in life vs. HIV.
Was not meant as insulting to members - was saying those people feel fine with their actions before being HIV+, and their actions about how they got, it and now living with it.
As a hypothesis that the group of people the OP insists doesn't exist, does exist.
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Are you stating that unbeknowest to me, there is a vast underclass of ignorant gay men who have chosen to believe that HIV is no big deal simply because medications exist, and that a crippling and regressive atmosphere of terror must be maintained at all times to prevent them from back their asses up to the nearest glory hole and losing track of time?
There are plenty of hetero and homo people who have a normal fear and concern about HIV before they are HIV+, and then get HIV.
Edited: In other words, I don't see that there is a "crippling and regressive atmosphere of terror"
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Are you stating that unbeknowest to me, there is a vast underclass of ignorant gay men who have chosen to believe that HIV is no big deal simply because medications exist, and that a crippling and regressive atmosphere of terror must be maintained at all times to prevent them from back their asses up to the nearest glory hole and losing track of time?
As a matter of fact... YES.
That is essentially the mindset that the CDC in the US has. It basically appears as "If we don't scare them, the queers will all wind up poz." Many "community leaders" also drink this kool-aid.
Reinfection is probably the kool-aid you will see the most now that you are poz. I'm not saying reinfection is impossible... I just haven't seen any credible scientific evidence to support it's existence and the experiential evidence is solidly against it. In short, too many fags having too much unprotected sex with too many people.... if reinfection was real you'd see alot of people with it. Or at least that's my theory.
The whole reinfection topic is approached with the same fear-compliance algorithm that is less than desirable, but widely deployed.
If you do not have safe sex, you will catch HIV - AGAIN - and die from AIDS.
Um, ok mommy, but what about the other kids who are behaving like heathens and not dead yet?
I hold that you can't win the grand prize twice according to what I've observed. I could very well be wrong, but I encourage you to do your own research.
Once you recognize that a argument has bad logic, the next step is to simply set it aside, otherwise you get trapped in a vortex of stupidity. You can't convince the convinced that they are wrong. You can only convince someone who will engage in dialog of a new way. This is why religious arguments usually fail to bear fruit of a palatable variety.
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Safer is safer, and in real life, in the heat n the sweat and the dark things do not always go to plan. It's not like you can do an inspection of microdetails. And yes, there is the thorny question of the very small number of transmission that are probably from oral sex (someone's gonna debate this I know...).
I am sorry you got an HIV+ diagnosis. I kinda like your post, it seems real. Some gay men can be dumasses, but not all of us. HIV closes doors with some people and opens them with others. Personally I have met better people and had better relationships post diagnosis. I totally get the reclusive thing. I don't think it's bad to withdraw, regroup and go off in a new direction.
I got two phone nos, one for people I know and one for people I trust. It's useful.
- matt
Thank you btw, that was a very nice thing to say.
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My point is that the scare stories accomplish nothing.
personally, I live to believe that hundreds, perhaps thousands, of people have changed their behavior and NOT gotten infected because of those "scare stories". If, as you think, nothing has been accomplished then many prevention programs we've had haven't done a thing and have been useless. I think otherwise. We'll never know every person that put on a rubber over the last 15 years or more because of the "scare stories" and haven't gotten HIV; but I have to believe that there are more of those kinds of people out there right now, than those who have messed up, forgotten, had an accident, etc and have gotten infected.
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personally, I live to believe that hundreds, perhaps thousands, of people have changed their behavior and NOT gotten infected because of those "scare stories". If, as you think, nothing has been accomplished then many prevention programs we've had haven't done a thing and have been useless. I think otherwise. We'll never know every person that put on a rubber over the last 15 years or more because of the "scare stories" and haven't gotten HIV; but I have to believe that there are more of those kinds of people out there right now, than those who have messed up, forgotten, had an accident, etc and have gotten infected.
I'm not saying that the public shouldn't be educated about the consequences, but there is a point where that education becomes redundant, but fear continues to grow. That fear has manifested itself in weird, unproductive ways. You need to be scared enough to know that you need to wear a condom. We've blown well past that point. I'm certainly not trying to take away from teaching about safer sex, but when you have people refusing to take meds for fear of the consequences and talk show hosts damning those who are infected because "everyone knows how to avoid it", the stories and the discourse need to be reined in. It doesn't matter whether someone refuses to take their meds and dies and is told that they're going to hell cuz they were stupid or whether they die because there are no meds and is told they're going to hell because AIDS is god's judgement, the scene and the pain and the death are the same. Anyone whose had driver's ed in the last 20 years knows that you only need to see the accident cleanup movie ONCE to realize that driving is "life or death". The message to "at risk" populations has to show the video every damned day. And so, yeah, you get "condom fatigue". And you get people who think the whole thing is so cartoonish that it can't be real. And you get people who make mistakes anyways, and fall apart because they think its 1985. In our quest to manipulate public health by changing perceptions of the disease, we've ensured that it will never be "just a virus".
I don't think that public education has "accomplished nothing". I do however believe that current levels of fearmongering are doing more harm than necessary to compel people to act reasonably.
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I'm not saying that the public shouldn't be educated about the consequences, but there is a point where that education becomes redundant, but fear continues to grow. ... I'm certainly not trying to take away from teaching about safer sex, but when you have people refusing to take meds for fear of the consequences and talk show hosts damning those who are infected because "everyone knows how to avoid it", the stories and the discourse need to be reined in.
people smarter and wiser than me, namely the anti-smoking lobby, their scientist and ad agencies, have proven that a constant barrage of negative images will not become redundant but will effectively help in the reduction of an unwanted behavior ie smoking cigarettes. (although I will grant you that taxation helped along with the ad of blackened lungs, to produce basically a 75% reduce in just a couple of decades) Similarly, "scare stories" are quite productive in mobilizing a populace to take measures to avoid being infected by HIV. For many years, while the "face of AIDS" was that of someone dying, we saw the numbers of infected dwindling.
I don't think that public education has "accomplished nothing". I do however believe that current levels of fearmongering are doing more harm than necessary to compel people to act reasonably.
People still die of AIDS every day, many not only because they didn't take the proper precautions (ignored the scare stories), but also because they weren't diagnosed or treated in time. Considering the outcome of undiagnosed untreated HIV is worse (it is still the same terminal disease that it's been for decades with death after 10-20 yrs of infection) than the effects for smoking (which "might" produce cancer or COPD several decades down the line), and the fact that the numbers for HIV-infected people is currently rising (perhaps because the msg was watered down by the mtn-climbing ads), I don't think enough legitimate fearmongering is happening anymore.
Having had multitudes of friends die, having buried two partners, seeing new patients joining the local ASO's clinic every week makes me believe that we can never do enough to "scare" people away from contracting this disease.
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What you want, wtfimpoz, is a general population with a nuanced knowledge of HIV and AIDS, circa 2010, but that may be hoping for too much. As for specific public education - we have both messages circulating - be scared to death because its awful and deadly, AND its a "chronic manageable disease" all the way long to "no big whoop" which heads back into conjecture.
Some messages circulate but are NOT the result of designed campaigns. Such as the "one pill a day" which is a sort of myth.
People who need HAART and refuse to take it out of fear, have slipped through whatever safety net exists to educate HIV+ people about the realities of HAART, 2010. I wouldn't say these people are the norm, among HIV+ people.
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What you want, wtfimpoz, is a general population with a nuanced knowledge of HIV and AIDS, circa 2010, but that may be hoping for too much. As for specific public education - we have both messages circulating - be scared to death because its awful and deadly, AND its a "chronic manageable disease" all the way long to "no big whoop" which heads back into conjecture.
Some messages circulate but are NOT the result of designed campaigns. Such as the "one pill a day" which is a sort of myth.
People who need HAART and refuse to take it out of fear, have slipped through whatever safety net exists to educate HIV+ people about the realities of HAART, 2010. I wouldn't say these people are the norm, among HIV+ people.
Really?
http://www.poz.com/articles/Survey_Emotional_Barriers_1_18833.shtml
I didn't even have to look further than the front page of POZ to find evidence to the contrary.
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Really?
http://www.poz.com/articles/Survey_Emotional_Barriers_1_18833.shtml
I didn't even have to look further than the front page of POZ to find evidence to the contrary.
A survey is not evidence of anything, rather it is a sampling of opinion and depending upon how the survey was conducted... well there is a saying in marketing research of "tell me what you want the numbers to say". I agree that there are many misconceptions regarding HIV, infection and treatment, but what you are suggesting goes against everything the HIV community has been doing for going on three decades now. Something tells me, that what you really want (or need) is a form of absolution, that somehow, by being told what to do to prevent infection, and still getting HIV, you have been tricked and that ultimately you had nothing to do with becoming poz.
I do not doubt your honest as to how you conducted your sexual affairs, and most probably you will never know exactly how you became infected. This always leads to the same crossroads. One path leads you to a life, fearful of stigma and what others think, both issues that you have absolutely no control over. You cannot change how other people feel or react. The second path leads you to a life, where you begin to forgive yourself for whatever role you may have played in becoming poz, you accept your infection, move on and get back to living your life.
While I find your frustration and emotions to be reasonable, considering the newness of your infection, I urge you to move past the how and why of infection and concentrate on gaining acceptance of your HIV. It feels to me, like you are lashing out, at anything and everything, as if life somehow comes with guarantees. The only guarantee that I can see, from life, is that you are guaranteed to be alive until you die. No refunds or exchanges accepted.
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"the HIV-positive people themselves are more likely to report eschewing treatment because they don't feel sick or because they're afraid of stigma or of drug side effects."
That gives 3 reasons, only one of which is side effects (fear of medicine). Plus the other reason - financial - which the survey RESULT does not say was non existant, just that HIV+ people are "more likely" to report the other three.
You are arguing that there is a regime of terror (including fear of HAART being poison I guess) but HIV+ people only consider this one of several factors.
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Just my opinion: Fuck Andrew Sullivan. He makes me want to go all "Larry Kramer". Fuck massaging the message too. As a person with AIDS , when asked, I tell people exactly what its been like: good, bad and worse.
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Just my opinion: Fuck Andrew Sullivan. He makes me want to go all "Larry Kramer". Fuck massaging the message too. As a person with AIDS , when asked, I tell people exactly what its been like: good, bad and worse.
I'd fuck Andrew Sullivan. But then, we don't always get what we want...
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Just my opinion: Fuck Andrew Sullivan. He makes me want to go all "Larry Kramer". Fuck massaging the message too. As a person with AIDS , when asked, I tell people exactly what its been like: good, bad and worse.
I have the same reaction, both to Andrew Sullivan and whole concept of how to "spin" the HIV prevention message.
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I have the same reaction, both to Andrew Sullivan and whole concept of how to "spin" the HIV prevention message.
And what exactly is this reaction? When one talks about going "Larry Kramer", is one referring to becoming an alienating sanctimonious bore whose message is so abrasive, insulting and off base that by default it turns away those who it is intended to warn?
And what "massaging of the message" are we talking about here?
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think it's time to break out the marshmallows and whiskey
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And what "massaging of the message" are we talking about here?
Fear works to deliver the message. People who want more than fear can learn current facts, good and bad, about HIV and HAART. Probably we need all kinds of messages and information - isn't that what we have? I don't see the "regime of terror" these past years. Aging with HIV is throwing out some new fears. Success and improvements in HAART are providing good news. Financial fears since its a recession and there are tight bugets all over - that's a real fear again, no?
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forget the whiskey, I'm going with a rectal suppository
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Why not just buy in a potter straight from the wheel?
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Why not just buy in a potter straight from the wheel?
If that's aimed at me I have no idea what that phrase means.
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I give up this argument as well and my drink of choice is a bottle of Chimay beer and some veal sausage with sharp mustard, that'll clean out the sinuses and all the way down...
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Are we talking about campfire food or preferred food in general? Homemade mac & Cheese with a gin and tonic :)
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Fear does nothing but paralyze. It puts us in that nebulous and disempowered place between fight or flight. Fear has never been a productive or proactive manner to sustain behavior change. When I said that I'm a person with AIDS and when asked what my experience is like, I reply with the good bad and worse--it was my way of not massaging the message. Again, from the first inane spouts Mr. Sullivan began spewing as a defacto speaker for all HIV positive persons, I found his dribble uniformed, self-serving and replete with his personal and political agenda, so yeah--fuck Andrew Sullivan.
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Fear does nothing but paralyze. It puts us in that nebulous and disempowered place between fight or flight. Fear has never been a productive or proactive manner to sustain behavior change. When I said that I'm a person with AIDS and when asked what my experience is like, I reply with the good bad and worse--it was my way of not massaging the message. Again, from the first inane spouts Mr. Sullivan began spewing as a defacto speaker for all HIV positive persons, I found his dribble uniformed, self-serving and replete with his personal and political agenda, so yeah--fuck Andrew Sullivan.
I like your perspective.
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And what exactly is this reaction? When one talks about going "Larry Kramer", is one referring to becoming an alienating sanctimonious bore whose message is so abrasive, insulting and off base that by default it turns away those who it is intended to warn?
And what "massaging of the message" are we talking about here?
I'm instantly turned off by Andrew Sullivan. I don't read his articles regularly but everything I have heard from him appears very self-serving. I also don't really care for the whole exercise of packaging HIV: who is going to be "the face" of HIV, the beautiful people or the lipo people? Do we tell people it is a "managable condition" or try to scare them into safe sex? How do we target gay men without alienating heterosexuals? It all just reeks of people trying to fulfill their personal or political agendas.
I say we treat HIV for what it is: a virus. It is similar to all the other viruses that we has human beings are exposed to. Here is how you protect yourself. This is how the medications work. Give people the best factual information researchers have and let them make their own decisions.
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I'm instantly turned off by Andrew Sullivan. I don't read his articles regularly but everything I have heard from him appears very self-serving. I also don't really care for the whole exercise of packaging HIV: who is going to be "the face" of HIV, the beautiful people or the lipo people? Do we tell people it is a "managable condition" or try to scare them into safe sex? How do we target gay men without alienating heterosexuals? It all just reeks of people trying to fulfill their personal or political agendas.
I say we treat HIV for what it is: a virus. It is similar to all the other viruses that we has human beings are exposed to. Here is how you protect yourself. This is how the medications work. Give people the best factual information researchers have and let them make their own decisions.
I fully agree. End http://doeshivlooklikeme.org/ (http://doeshivlooklikeme.org/) along with the "Poz Face" shit. God knows the former wouldn't be necessary without the latter.
I used to be a regular sully reader. It was a blast watching his slow-evolving existential crisis as he shifted from conservative to liberal, finally coming to understand on a visceral level what he probably understood on an intellectual level all along...that the republicans are not the tories. Then, I realized that the rate of the whole crisis was glacial. Any progress that I, or any other human may think we're actually witnessing is entirely an illusion brought about by the awesome boredom of watching an immovable object in progress and the knowledge that, at this rate, it will take ten thousand years for the ice will recede and A.S to become a full blown liberal. I've always felt a certain affinity for him though. Maybe its the way those who hate him respond not with rebuttals but projectile vomitting and spinning heads, a-la that poltergeist movie. Maybe its the way he's so delightfully out of it sometimes (I believe his headline in response to lawrence v. texas was actually "free at last"). Maybe he's just "my type", and I've got a soft spot for guys who look like him. (shrugs).
But back to the point, I wholly agree that the PR manipulation of the illness needs to just stop on both sides. "Poz Face" creates a need for "does HIV look like (a gorgeous smiling 23 year old)", creates a fear that kids are going to start barebacking strangers which inspires that ridiculous documentary "The Gift", which reminds us that HIV, like every other "chronic manageable condition" is ultimately fatal in some way or other, creating stigma and a need for more campaigns like "does HIV look like (Regan Hoffman)". Its a vicious cycle, and i agree that it needs to end on both sides.
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We need HIV- people to be so scared of getting HIV that they only have protected sex and HIV+ people to realize that it's not a death sentence anymore. The two messages contradict each other unfortunately.
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We need HIV- people to be so scared of getting HIV that they only have protected sex and HIV+ people to realize that it's not a death sentence anymore. The two messages contradict each other unfortunately.
Agreed, and if we walk a very fine line we can realize this. Unfortunately, we've entirely ignored the line and are excessively comfortable with the stigma and despair the HIV positive feel.
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Agreed, and if we walk a very fine line we can realize this. Unfortunately, we've entirely ignored the line and are excessively comfortable with the stigma and despair the HIV positive feel.
We? Who is the "we" you speak of? I trust you're using the magisterial pronoun.
MtD
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We? Who is the "we" you speak of? I trust you're using the magisterial pronoun.
MtD
general statement, not saying that I in particular have any say in any policy.
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Either way, its my belief that the pendulum has swing the other way. We emphasize the side effects and failures of treatment WAY too much.
Yes--a large problem exists when an unbalanced message is given--either be so afraid of HIV that you pathologize your own sexual and sensual energies, to look--hey--you can live a long, full, healthy, happy and productive life after HIV (and get your picture taken while you climb a mountainside).
Its not a double message--its a balanced message for each audiance.
This however doesn't do anything to get me off the "I hate Andrew Sullivan" band wagon. We had to suffer through his self promoting and right-wing promoting spittle all while he seemed more interested in tongue boxing the conservative's fart boxes then doing something helpful and proactive about HIV prevention and care.
I've been positive almost 20 years--I am SOO extremely tired of the 'theatre of me' 'activists' and talking heads who complain about some weight loss in their face and ass cheeks while writing from their 5th Avenue flats, getting anything from legal meds to pig fat injected to make them feel less--AIDSy so they don't scare their friendziepoo's as they stroll out to the country for a weekend with the horsey set.
Seen too many others have to inject with dirty/used works because their wasn't enough balls hanging from our 'activists' to pursuade our elected officials to fund exchange programs. Seen too many pozzies flop from place to place and live in shelters most people wouln't stop to take a shit in, because housing isn't a 'sexy' issue for our pozzie elites...
etc etc ad infinitum.
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I've been positive almost 20 years--I am SOO extremely tired of the 'theatre of me' 'activists' and talking heads who complain about some weight loss in their face and ass cheeks while writing from their 5th Avenue flats, getting anything from legal meds to pig fat injected to make them feel less--AIDSy so they don't scare their friendziepoo's as they stroll out to the country for a weekend with the horsey set.
Seen too many others have to inject with dirty/used works because their wasn't enough balls hanging from our 'activists' to pursuade our elected officials to fund exchange programs. Seen too many pozzies flop from place to place and live in shelters most people wouln't stop to take a shit in, because housing isn't a 'sexy' issue for our pozzie elites...
etc etc ad infinitum.
Of course there should be a hierarchy of challenges of living with HIV,
and resources spent to attack the most pressing.
But sadly that is not how global society works. That said, I think this class critique is stuck awkwardly onto this argument. Surely everyone who suffers lipo frets about it, rich and poor. Pozzie elites aren't all bad. Serving the needs of the elites also drives developments and improvements that potentially all people living with HIV could take advantage of, if the resources are there. I don't think its just elites getting filler, for example. In a sort of creepy way, couldn't we say the great success of very expensive HAART of the last 5-10 years, proven in the countries that could afford to pay for it, has been a good bargaining chip for getting HAART rolled out to ever more numbers of people around the world whose lands may not be able to afford it? It proved the point that the science and medicine is there, its just a matter of resources, and then you can jump immediately to human rights to health and access, and the funds start appearing from governments, foundations, etc.
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Of course there should be a hierarchy of challenges of living with HIV,
and resources spent to attack the most pressing.
But sadly that is not how global society works. That said, I think this class critique is stuck awkwardly onto this argument. Surely everyone who suffers lipo frets about it, rich and poor. Pozzie elites aren't all bad. Serving the needs of the elites also drives developments and improvements that potentially all people living with HIV could take advantage of, if the resources are there. I don't think its just elites getting filler, for example. In a sort of creepy way, couldn't we say the great success of very expensive HAART of the last 5-10 years, proven in the countries that could afford to pay for it, has been a good bargaining chip for getting HAART rolled out to ever more numbers of people around the world whose lands may not be able to afford it? It proved the point that the science and medicine is there, its just a matter of resources, and then you can jump immediately to human rights to health and access, and the funds start appearing from governments, foundations, etc.
Sorry--I'm just never going to buy this 'trickle down' theory as being of benefit to people living with, or at risk for HIV. When ART came out, many advocates immediately worked to reduce the costs to industrial nations and worked to provide supports for free medications in Africa and Asia.
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Yes I agree. Also yes be suspicious of trickle down. But pharma developed HAART to sell it and it was the elites, in a global perspective, who would have that kind of money.
I guess I don't imagine there are all that many HIV+ people living in the lap of luxury on the 5th Avenues of the world, in relation to the total number of HIV+ people.
And not all "elites" are self-centered superficial types like you seemed to be painting. Some founders of GMHC, for example, were certainly "elites".
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I'm getting facial fillers in three weeks, and I don't live on anything approximating Fifth Avenue. In fact, I found that post somewhat offensive, though it was hardly the only post in this thread that I've been uncomfortable with. I'm getting mine through the patient assistance program by the company that makes Sculptra, as can anyone in the US that qualifies for it financially.
There's also been substantial hogwash in this thread as regards Michael Petrelis posting a picture of his sunken face, which I viewed as an act of personal empowerment. Some of you here really need to step outside of your own self-centered comfort zones.
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I'm getting facial fillers in three weeks, and I don't live on anything approximating Fifth Avenue. In fact, I found that post somewhat offensive, though it was hardly the only post in this thread that I've been uncomfortable with. I'm getting mine through the patient assistance program by the company that makes Sculptra, as can anyone in the US that qualifies for it financially.
There's also been substantial hogwash in this thread as regards Michael Petrelis posting a picture of his sunken face, which I viewed as an act of personal empowerment. Some of you here really need to step outside of your own self-centered comfort zones.
there is nothing "empowering" about denigrating ones appearence...with the natural side effects of lipoatrophy...as "poz face". There is a difference between owning something and making it a focal point.
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there is nothing "empowering" about denigrating ones appearence...with the natural side effects of lipoatrophy...as "poz face". There is a difference between owning something and making it a focal point.
It's amazing how someone that's been diagnosed for two months would know what someone with lipo considers empowering or not. Would you like to tell me how to defecate as well?
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Bravo, Philly!
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the natural side effects of lipoatrophy...as "poz face".
There's also nothing "natural" about the side effects of lipo, so there goes another extremely offensive comment by the increasingly irrelevant wtfimpoz.
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There's also nothing "natural" about the side effects of lipo, so there goes another extremely offensive comment by the increasingly irrelevant wtfimpoz.
I'm sure I'll get lampooned for this, but as people get older they do tend to lose some of the fat in their face naturally. It might be what he's referring to. Let me be clear in that I'm in no way shape or form defending him.
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He's a doomsdayer so maybe he meant "inevitable" and said "natural" by mistake
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I'm sure I'll get lampooned for this, but as people get older they do tend to lose some of the fat in their face naturally. It might be what he's referring to. Let me be clear in that I'm in no way shape or form defending him.
I'm really sure that natural aging processes are responsible for my having grade 3 lipoatrophy in my face, buttocks, arms, legs and feet by the age of 33.
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I'm really sure that natural aging processes are responsible for my having grade 3 lipoatrophy in my face, buttocks, arms, legs and feet by the age of 33.
I wasn't talking about you, dearest. I know a handful of guys with very serious and early onset lipoatrophy issues that are completely related to the early HIV meds. However, when you start getting into your 50s and 60s this stuff happens naturally as well and that's more what I think wtf meant. You know just trying to pick a fight in order to engage me in make-up sex is only cute the first couple of times.
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Philly: rather than declaring your offense at whats written, why don't you try to educate us as to what you find so offensive and why "Poz Face" is empowering? It'd certainly be more effective than declaring others to be "self centered".
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Miss P it's not worth the effort. It's why we have to have a LTS forum.
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Sad that stuff like this prevents many LTS'rs from contributing to this forum, where some info could do some good.
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there is nothing "empowering" about denigrating ones appearence...with the natural side effects of lipoatrophy...as "poz face". There is a difference between owning something and making it a focal point.
Why don't you do us all a favor and STFU, because your comments are beyond offensive. You have no clue what it is like to take medication that changes you physically, right before your very eyes. There are no natural side effects to the medications, especially those from before 1996. I had PN and numbness, from D4T, that got so bad I walked with a cane for 2 years. I have no body fat, other than around my stomach and I cannot even sleep on my side, because my knees rub bone against bone. I can't sit on any hard surface, because I have no fat on my ass.
My fucking feet and legs swell, due to the many maladies I got as direct and indirect results of the meds and various diseases. So what the hell is natural about any of this?
What you are missing is that these changes have left their mark and for many, it is called "poz face", because everyone knows what it means and for me, it also a badge of honor. I was lucky, I survived, but not without paying a very heavy price. For you to suggest that there is anything natural about what we suffer.... you need to just back off, before you really piss someone off.
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Why is Poz Face empowering? I don't know, maybe claiming something that could be seen as a disfigurement and saying "here I am, take me as I am"? Maybe knowing that so many have died and those with lipo are still here? Maybe just saying "fuck it, I think I am beautiful? Who knows why people find things empowering but who are we to judge that. Anyone who takes a negative and turns it into something positive is empowering to me.
Please also understand that some of the things in your posts could be viewed as offensive to many LTS on this board and they are handling you with kid gloves. Our LTS members are an amazing group of people who have dealt with this disease for decades and have much wisdom to share - don't make them feel this forum isn't a safe place for them.
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Trust me, I don't have kid gloves on. I just am not quite ready to quit this site, and therefore I rarely post.
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there is nothing "empowering" about denigrating ones appearence...with the natural side effects of lipoatrophy...as "poz face". There is a difference between owning something and making it a focal point.
Hmmmpfff... If there was a nomination for the most moronic and offensive post of the week this would be the winner without any question.
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Yes I agree. Also yes be suspicious of trickle down. But pharma developed HAART to sell it and it was the elites, in a global perspective, who would have that kind of money.
I guess I don't imagine there are all that many HIV+ people living in the lap of luxury on the 5th Avenues of the world, in relation to the total number of HIV+ people.
And not all "elites" are self-centered superficial types like you seemed to be painting. Some founders of GMHC, for example, were certainly "elites".
Lets get this right--PhARMA developed PI's VIA the NIH--which is publically funded, then rolled them out at exorbitant prices claiming all along that it was the cost of R&D that inflated the prices.
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I'm getting facial fillers in three weeks, and I don't live on anything approximating Fifth Avenue. In fact, I found that post somewhat offensive, though it was hardly the only post in this thread that I've been uncomfortable with. I'm getting mine through the patient assistance program by the company that makes Sculptra, as can anyone in the US that qualifies for it financially.
There's also been substantial hogwash in this thread as regards Michael Petrelis posting a picture of his sunken face, which I viewed as an act of personal empowerment. Some of you here really need to step outside of your own self-centered comfort zones.
Sometimes we take offense to things. We seem to live through it however. Perhaps your suggestion of stepping outside of one's self-centerd comfort zone would prove helpful to you in this regard. Sure, I have "Poz face" too. I'm more concerned that we have issues such as Norvir boosting thier price 400% once it stopped being a main line PI and began to be used as a boost to other PIs. Or that ADAPs all over are going to waiting lists and shrunken formularies here in the US, while many HIV positive people in Africa still can't get adequate access to ART.
I think an act of personal empowerment--to return to the OPs orignial points, is to give correct and clear information about how one reduces their cjances of being infected with HIV, and objectively describes one's life and health issues post HIV infection. Personlly, I must just seem to reject 'filler' in many forms.
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OK Marco, but that's one instance in a complicated history of HIV and HAART.
You trashed the HIV "elite" as somehow being responsible for skewed priorities, or for navel gazing and self-centered superficial concerns about their poz faces at the polo grounds.
Bill Clinton just did the same in Vienna - saying too much money spent on administration for the VIP's, at conferences such as Vienna itself.
I worked many years in fund-raising and its fair to say this is a good criticism - all non-profits have a responsibility to donors to use the money for the end goals and not high living. "Elites" are aware of such issues and not all cynically ignore them.
As for Pharma, these days the social responsiblity judgments are pretty dire, with a few bright spots.
http://www.fiercepharma.com/story/aids-activists-grade-pharma/2009-09-14
AIDS activists grade pharma
September 14, 2009 — 4:08pm ET | By Calisha Myers
Nine companies were evaluated over the span of a year on their drug development portfolios and plans, the accessibility of their commercialized medicines, drug pricing, community relations and marketing practices. Those companies included Abbott Laboratories (grade: F), Roche (grade: D), Boehringer Ingelheim (grade: D+), Bristol-Myers Squibb (grade: C-), GlaxoSmithKline (grade: C-), Gilead Sciences (grade: C+) and Pfizer (grade: C+). And at the head of the class? Merck and Tibotec Therapeutics (grade: B): both received praises for lowering the prices of their drugs.
The bad grades would indicate Pharma still develops drugs mostly for profit, which we all know.
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I think an act of personal empowerment--to return to the OPs orignial points, is to give correct and clear information about how one reduces their cjances of being infected with HIV, and objectively describes one's life and health issues post HIV infection.
Yes don't we all agree on this?
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The bad grades would indicate Pharma still develops drugs mostly for profit, which we all know.
Exactly. So let us not attempt to rewrite history or add undue spin in a manner which suggests that in the early days of ART, those that could afford new meds in combo therapy were somehow valiantly 'testing' these meds for the less fortunate. We were ALL scrambling for next thing that would keep us alive just a wee bit longer. So much so that buffalo humps, PN, kidney stones and swollen abdomens may have been considered by some as an acceptable trade off.
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Exactly. So let us not attempt to rewrite history or add undue spin in a manner which suggests that in the early days of ART, those that could afford new meds in combo therapy were somehow valiantly 'testing' these meds for the less fortunate. We were ALL scrambling for next thing that would keep us alive just a wee bit longer. So much so that buffalo humps, PN, kidney stones and swollen abdomens may have been considered by some as an acceptable trade off.
I was there too buddy and saw what friends and lovers went through. If you think I was implying " that in the early days of ART, those that could afford new meds in combo therapy were somehow valiantly 'testing' these meds for the less fortunate" its a misunderstanding.
Maybe it was my verb choice (HAART was developed...)
You're the won spinning the "HIV+ elites" as somehow responsible for the wretched prognosis of the poor. And I was calling that out as unnecesary spin in this thread.
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Sometimes we take offense to things. We seem to live through it however. Perhaps your suggestion of stepping outside of one's self-centerd comfort zone would prove helpful to you in this regard. Sure, I have "Poz face" too. I'm more concerned that we have issues such as Norvir boosting thier price 400% once it stopped being a main line PI and began to be used as a boost to other PIs. Or that ADAPs all over are going to waiting lists and shrunken formularies here in the US, while many HIV positive people in Africa still can't get adequate access to ART.
Thanks for the non sequitur, Marco. There's nothing in my commentary or the subject of facial fillers that would indicate that I have a desire for waiting lists or exorbitant pharmaceutical prices.
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Thanks for the non sequitur, Marco. There's nothing in my commentary or the subject of facial fillers that would indicate that I have a desire for waiting lists or exorbitant pharmaceutical prices.
Not really a non sequitur at all. I never wrote that you had a desire for these things. I stated that I was more concerned about these things than I am how my Poz face looks to others. Perhaps along with your suggested step outside of one's self centered comfort zone, careful and objective reading of posts could be attempted as well?
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I was there too buddy and saw what friends and lovers went through. If you think I was implying " that in the early days of ART, those that could afford new meds in combo therapy were somehow valiantly 'testing' these meds for the less fortunate" its a misunderstanding.
Maybe it was my verb choice (HAART was developed...)
You're the won spinning the "HIV+ elites" as somehow responsible for the wretched prognosis of the poor. And I was calling that out as unnecesary spin in this thread.
I lived it. From handfuls of AZT to choking on PN producing DDI. I didn't say our Pozzie Princes and Princesses were responsible--but I did say they did a large bit of focusing on their own needs--and these were the ones lifted up by the media as our poster children. It happens even today. The current issue of POZ has Ms. Hoffman describing her valiant foregoing of a DC cab ride (to hob-knob with the really important people) and walking in her expensive stilettos as a way to demonstrate her oil-use consciousness. PUUUUULLLEASE!
I live in a place where people still have to use used syringes because we don't have 100% acces to sterile ones. Fuck stilettos, we're talking bare feet taht are injected into because arm veins are used up. Where I live people in our ID clinics are treated for OIs because they keep having treatment interruptions due to changing benefit access.
I'm not being classist here--I'm saying that to those who much has been given--much is expected. I'd be more appeased if I saw and heard more from our media-thrust pozzies with regard to 100% access to ART and increased availability of effective, evidence and science-based prevention strategies and tools.
So if this offends our cosmopolitan set, I really don't care. I want clean syringes, access to meds and good prevention tools.
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I'm surprised it took having HIV for a member to take notice of the differences between the rich and the poor. So what Reagan rides a high horse, if you're jealous get on the saddle with her. It's ironic you find room to tell another member to read posts more objectively, when perhaps it should be applied to your overall thinking.
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I'm surprised it took having HIV for a member to take notice of the differences between the rich and the poor. So what Reagan rides a high horse, if you're jealous get on the saddle with her. It's ironic you find room to tell another member to read posts more objectively, when perhaps it should be applied to your overall thinking.
Not jealousy at all--just wish I'd hear and see more about some of the concerns I raised in my previous post. Just because one is called to account, doesn't mean there is jealousy involved. But I do seem to remember the last time I had something similar to say about Ms. Hoffman, your response was much like this recent one. Perhaps I don't mind asking a bit more from those in the Poz media, and maybe you just personally like Ms. Hoffman?
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Not really a non sequitur at all. I never wrote that you had a desire for these things. I stated that I was more concerned about these things than I am how my Poz face looks to others. Perhaps along with your suggested step outside of one's self centered comfort zone, careful and objective reading of posts could be attempted as well?
Admit it Miss P, you're an elitist. Living the high life on disability.
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Admit it Miss P, you're an elitist. Living the high life on disability.
I know, it's horribly shameful. At least when I was on Fuzeon for two years but using a Biojector in clinical trial, I strapped on my Manolo Blahnik stillettos and took my excess syringes over to Camden for folks to use. I was so embarrassed to be slumming that I wore a bag over my head though. Hope nobody saw me in the horsey set.
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Not jealousy at all--just wish I'd hear and see more about some of the concerns I raised in my previous post. Just because one is called to account, doesn't mean there is jealousy involved. But I do seem to remember the last time I had something similar to say about Ms. Hoffman, your response was much like this recent one. Perhaps I don't mind asking a bit more from those in the Poz media, and maybe you just personally like Ms. Hoffman?
Friend, I only think of her when you bring her up. Perhaps you have a hard-on for the ice princess. I'll have to go back and review your posts more "objectively" though to be sure.
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***SIGH***
It's stuff like this that keeps me in LTS forum. I've accepted it though, so I'm fine with it. Had a discussion with a nurse who gave me my T shot yesterday about new patients at our clinic not showing up for their visits; they were scheduled to have 4 new patients yesterday, and only 2 showed. This is such a foreign concept to me (ignoring HIV) that I can't even wrap my mind around it, and therefore won't try.
Sorry if this seems like an unsympathetic post, or a bit harsh; I certainly am not intending to paint ALL newly diagnosed folks with the same broad brush. Just pointing out something, that's all.
Hugs, Alan
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***SIGH***
It's stuff like this that keeps me in LTS forum. I've accepted it though, so I'm fine with it. Had a discussion with a nurse who gave me my T shot yesterday about new patients at our clinic not showing up for their visits; they were scheduled to have 4 new patients yesterday, and only 2 showed. This is such a foreign concept to me (ignoring HIV) that I can't even wrap my mind around it, and therefore won't try.
Sorry if this seems like an unsympathetic post, or a bit harsh; I certainly am not intending to paint ALL newly diagnosed folks with the same broad brush. Just pointing out something, that's all.
Hugs, Alan
Alan,
I'm with ya. A few simple statements about expecting PWA's who have access to the media to be mindful of those who have no or limited access and I'm told I have a "hard on" or I'm jealous. The OP brought out the rantings of one such PWA in citing Andrew Sullivan--guess its ok to say something critical about him here--just not others?
The original 'poll' points to an erroneous assumption that there are only 2 ways to appraoch the original question: Massage the facts for the neggies, or massage the facts for the pozzies. Its a flawed assumption. So is getting a history lesson about HIV treament from someone who tested positive in this decade. Back to the LTS for me.
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I know, it's horribly shameful. At least when I was on Fuzeon for two years but using a Biojector in clinical trial, I strapped on my Manolo Blahnik stillettos and took my excess syringes over to Camden for folks to use. I was so embarrassed to be slumming that I wore a bag over my head though. Hope nobody saw me in the horsey set.
Not always about you.
When I posted about the 5th Ave. pozzie divas freaking about the fact that they actually LOOKED like they had HIV and facial filler was the premier topic of the day--while med access sucks around the world--I wasn't talking about you. I don't even know you, and am very sure you don't know me. So should we begin cannonization for your kindness to pass along your unused sharps, while of course wearing the best of shoes?
Again,
Not always about you.
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Alan,
I'm with ya. A few simple statements about expecting PWA's who have access to the media to be mindful of those who have no or limited access and I'm told I have a "hard on" or I'm jealous. The OP brought out the rantings of one such PWA in citing Andrew Sullivan--guess its ok to say something critical about him here--just not others?
The original 'poll' points to an erroneous assumption that there are only 2 ways to appraoch the original question: Massage the facts for the neggies, or massage the facts for the pozzies. Its a flawed assumption. So is getting a history lesson about HIV treament from someone who tested positive in this decade. Back to the LTS for me.
Oh spare me your heart wrenching story Marco. It's those generalizations that you partake in that causes your logic to be flawed. When they are repeated it becomes aggravating.
If people want to take exception to what Andrew Sullivan is preaching so be it. I just don't take to my life playing a victim, life is way too short for this and as a result I do very little finger pointing. Speaking of which, I am disappointed right now... so a few of the newly diagnosed don't get it, what is new? I think I would be a clear indicator of how it takes a noob time to experience living with HIV before a change in thinking sets in. So we just throw our collective hands in the air and say, "back to LTS for me"? But, at the same time judge the work Reagan is doing without even knowing... Are you her personal secretary Marco?
To the other LTS'ers my argument is not with you, OP said something rather offensive and all I can do is say I wish he hadn't said it. Marco, I don't have a grudge against you... I'm not mad at you.. and if I am offending you right now I am sorry, it's not my intention, but I am adamantly in disagreement with you. Like the issue you had on the forums earlier this year where you take what one person says, or in Reagan's case- actions taken visible to you, and cry extreme foul. I just don't like your logic and when you voice it I say something, just like I did months ago when you implied this wasn't a safe place for us straights.
And here you go with the "back to LTS for me" when your issue is something totally different than what they are referring to.. Damn dude, in my book that's so whack.
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Oh spare me your heart wrenching story Marco. It's those generalizations that you partake in that causes your logic to be flawed. When they are repeated it becomes aggravating.
If people want to take exception to what Andrew Sullivan is preaching so be it. I just don't take to my life playing a victim, life is way too short for this and as a result I do very little finger pointing. Speaking of which, I am disappointed right now... so a few of the newly diagnosed don't get it, what is new? I think I would be a clear indicator of how it takes a noob time to experience living with HIV before a change in thinking sets in. So we just throw our collective hands in the air and say, "back to LTS for me"? But, at the same time judge the work Reagan is doing without even knowing... Are you her personal secretary Marco?
To the other LTS'ers my argument is not with you, OP said something rather offensive and all I can do is say I wish he hadn't said it. Marco, I don't have a grudge against you... I'm not mad at you.. and if I am offending you right now I am sorry, it's not my intention, but I am adamantly in disagreement with you. Like the issue you had on the forums earlier this year where you take what one person says, or in Reagan's case- actions taken visible to you, and cry extreme foul. I just don't like your logic and when you voice it I say something, just like I did months ago when you implied this wasn't a safe place for us straights.
And here you go with the "back to LTS for me" when your issue is something totally different than what they are referring to.. Damn dude, in my book that's so whack.
So the newly diagnosed don't get it? Like those of us infected in the 80's and early 90's somehow 'got it'? There is no immaculate infection. Information, fear messages etc, did nothing to keep us from getting HIV, why would one think it would work now. Its MUCH deeper than that. You think I'm playing the victim because I don't want to listen to historical revisionism about ART from someone who has only been positive for 5 years? THAT'S whay I said back to the LTS for me. Great--so you love Ms. H--I could care less--I used her as ONE example in my comments and it is from her most recent article in POZ.
We just throw our hands in the air? Nope--that's why I was talking about the OPs poll being an incorrect assumption. Its way I was explaining that we needed leadership from pozzies in the media to stretch a bit from their own issues and see a larger picture. But if you're not into that, cool.
Its the role of any activist to cry foul--and do something about it. Something I've been doing since the early 90's. As for finger pointing, brother--seems like you've got a few aimed my way. So what is it exactly that you disagree with me on? Is it that you think we should massage our messages to highlight or downplay certain aspects of HIV? Is it that PWA's who have the ear of the media should only discuss their own personal issues? Is it that PhARMA should be chased down and given one big giant fuzzy-wuzzy hug by all of us who have lived with the side effects of ART for years?
Cuz those are the points I was discussing. I have an extremely low threshold for BS and this thread started to reek like it to me. "Spare me your heart wrenching story"? Shhheeeesh. Nice.
I'm not offended.
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So the newly diagnosed don't get it? Like those of us infected in the 80's and early 90's somehow 'got it'? There is no immaculate infection. Information, fear messages etc, did nothing to keep us from getting HIV, why would one think it would work now. Its MUCH deeper than that. You think I'm playing the victim because I don't want to listen to historical revisionism about ART from someone who has only been positive for 5 years? THAT'S whay I said back to the LTS for me. Great--so you love Ms. H--I could care less--I used her as ONE example in my comments and it is from her most recent article in POZ.
We just throw our hands in the air? Nope--that's why I was talking about the OPs poll being an incorrect assumption. Its way I was explaining that we needed leadership from pozzies in the media to stretch a bit from their own issues and see a larger picture. But if you're not into that, cool.
Its the role of any activist to cry foul--and do something about it. Something I've been doing since the early 90's. As for finger pointing, brother--seems like you've got a few aimed my way. So what is it exactly that you disagree with me on? Is it that you think we should massage our messages to highlight or downplay certain aspects of HIV? Is it that PWA's who have the ear of the media should only discuss their own personal issues? Is it that PhARMA should be chased down and given one big giant fuzzy-wuzzy hug by all of us who have lived with the side effects of ART for years?
Cuz those are the points I was discussing. I have an extremely low threshold for BS and this thread started to reek like it to me. "Spare me your heart wrenching story"? Shhheeeesh. Nice.
I'm not offended.
You're a lawyer aren't you?
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;D NO! Totally sorry if I come off that way :D Just call it a character flaw!
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Marco,
I'm confused, because while I share your frustrations, with many aspects of HIV services, I can't see how flaunting your activist work, while disparaging the work of others, is productive to anyone. You come across to me, as an elitist, as if what you did as an activist is more worthy of praise than what anyone else did. You wonder why the messages, funding, drug costs, etc., are so screwed up and I submit it is attitudes like yours that only widen a gulf between people. Nobody likes to be demeaned, either directly or implied.
I am no better than the next person, because of what I have or have not done. We are all equal in the eyes of HIV and that must always remain the enemy.
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Marco,
I'm confused, because while I share your frustrations, with many aspects of HIV services, I can't see how flaunting your activist work, while disparaging the work of others, is productive to anyone. You come across to me, as an elitist, as if what you did as an activist is more worthy of praise than what anyone else did. You wonder why the messages, funding, drug costs, etc., are so screwed up and I submit it is attitudes like yours that only widen a gulf between people. Nobody likes to be demeaned, either directly or implied.
I am no better than the next person, because of what I have or have not done. We are all equal in the eyes of HIV and that must always remain the enemy.
If expecting more from PWAs who have access to the media than discussions of their shoes or the 'let them eat cake' crap spewed by Sullivan makes me an elitist--so be it. Can't rmember 'flaunting' anything either. I'll take your hit at my attitude as well. I think sitting back and not calling people to accountability--whether they be poz or elected officials, is an example of how our activism has weakend over the years.
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Marco-brilliant insight. Mine was a false dichotomy and I agree with everything you've written.
Everyone else-I'm sorry for what I wrote. It was poorly worded and not well thought out, tapped out on my iPhone before leaving for the day. It was also a single mistake, intended to state what petrellis own readers have also maintained...that he doesn't look bad. I realize that lipo is physically and emotionally excruciating and was not trying to downplay it's impact on the individual so much was I was trying to comment, as an outsider, on a condition whose problems are largely instigated by the reactions of outsiders. It may have been the newbie equivalent of "but you don't act gay", but telling me to "shut the fuck up" and screaming at me for having dared misunderstand or comment upon an act of "empowerment" presumes certain parties to be beyond question. If the issue in question were exclusively related to the experience of long term survivors, I would in fact shut the fuck up. It is not. Instead, the thread was started from my perspective as a general commentary on the effects of HIV discourse on at risk populations and the newly infected. I'd like to point out that as long term survivors, these are populations whose viewpoints are relatively naive to you all. I see, in this presumption that the negs can be terrified into staying negative, a misunderstanding about the nature of a great deal of new infections...namely that humans are always capable of controlling their acts and circumstances. Sadly, and obviously, this is not always the case. Continuing to pour on the fear just makes everything worse.
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Mea Culpa!
Skeebo and Kilfoil got me to thinking. I went back over my posts and while I still agree with thier intent, I was WAY to snarky and I apologize for that. I'm not flaunting here as was suggested, but I have been working with a few groups on the new National HIV/AIDS Strategy and its helped to make me a bit more pissy than usual. Upon reading my posts here--yeah, I sounded like a jerk and good have made my points with a bit more understanding and compasion.
Thanks for not only giving me a place to vent--but for calling me out for acting like a jerk.
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Thanks for not only giving me a place to vent--but for calling me out for acting like a jerk.
Damn you Marco!!! I had this long reply all spell checked and everything, you're a lucky man (j/k). I agree, more can be done, but at the same time remember there are those of us that do things that just go unnoticed or not mentioned. Like I said activism has many roles and I like to think we all play a part in some way.
I will admit though, the way you feel about Mrs. Hoffman is the same way I feel about Magic Johnson- more could/should be done with the platform they have.
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Well she didn't have HIV, but she was a grand dame who did her share for us:
Into the Breach, Clad in Adolfo
There is value in reciting the trials that accompanied the onset of AIDS, because without it as context, there is so much that cannot be understood. Take the accomplishments of Judith Peabody, a socialite and philanthropist who died at 80 on July 25. Without the proper context, one might know only that Mrs. Peabody raised money for causes, as rich people are expected to do; that she gave and attended parties; that she dressed in clothes by Bill Blass, Carolina Herrera, Adolfo, Oscar de la Renta and Yves Saint Laurent; and that, like many women of her generation and era, she “volunteered.”
http://www.nytimes.com/2010/08/05/fashion/05Gimlet.html
R.I.P Judy Peabody