In the original piece I wrote on the 30th Anniversary of the AIDS Epidemic, the very same piece which was accidentally deleted, one of the subject areas I covered was what I personally think is wrong with the modern Hiv/AIDS activism front and while looking back in retrospect, I came to the realization that what I find wrong on that front is very similiar to what I find wrong with the numerous Hiv/AIDS support groups which are cropping up left-n-right all over the internet - how the activists who are active in both areas (or even a combination of the two) portray, as well as misrepresent, both themselves and the rest of us.
The certain degree of disdain I have for some of my fellow Hiv/AIDS activists is nothing new to those who follow this blog regularly. Although I have more than just one bone to pick with my fellow activists I'd have to the say the biggest point of contention between them and myself is that I dont like how some of them are putting their own personal agendas above the issue that is suppose to unite us all together in the first place - Hiv/AIDS. I dont like how some of them act like it's much more important to attend this-or-that gala event and be present for this-or-that photographic opportunity versus securing things like more funding for the ADAP waiting lists and further medical research. The irony regarding all of this is that they actually think that no one else notices their behavior, yet the government officals who they seek financial backing from, as well as the major drug companies and anyone else with even the most average eyesight and intelligence can very clearly see that for some activists out there these medical conferences are nothing more than just another social networking opportunity. Then on top of that, there are those folks who have the audacity to wonder "Gee, why are the various states cutting out ADAP?" Well, I'm no rocket scientist but do you think that maybe it's because those who are in a position to help us arent taking those who are suppose to be fighting for us as seriously as they could be?
When any activists behave in the aforementioned manner their portrayal of themselves creates a ripple effect that trickles down and reflects on the rest of us because in essence, they are sending out a very loud, red-flagging, mixed message to the rest of the outside world that "Hey, we're here but since all our friends are here too and you cant tell by our physical appearance that some of us have been battling this disease for the last 15 to 20 years, eh, don't worry about AIDS because we're really just here for the social experience of it all anyways." Really? Hmm, I thought activism was originally intended to make the world a better place for everyone, not just a select few?
This then ties into yet another factor of why I dont think the Hiv/AIDS activists of today are doing their jobs as effectively as they could be - lack of honest representation. Have any of you ever thought that maybe one of the reasons we're not getting taken more seriously by the powers that be is because the majority of those activists currently soaking up the rays of the public limelight simply dont look sick enough to warrant government funding? Yes, I agree, that line of rationale sounds borderline preposterous in the sense that no government should judge how well or unwell its citizens are due to their physical appearance; however, my point is a valid one. Almost every one of you out there on the frontlines who have attended many-a medical conferences and meetings nationwide appear to take excellent physical care of yourselves and hey, that's great, hopefully your life expectancies will be lengthened because of it; but, here's the kicker of that all - if none of us shows the government, as well as the rest of the world, how sick alotta us really are as well as how close to death alotta us really are, how can any of us expect them to take us 100% seriously?
I'm not saying those of us who are in extremely poor health should have blown-up posters of ourselves made and sent to every elected official across this great land of ours; but, why not occassionally present the public with honest representations of all of us versus just those who are approaching the podiums and speaking out? There were many great Hiv/AIDS activists in the early years who got out there and fought for more available and cost-effective drugs, better medical care and further medical research (Bobbi Campbell is one who always automatically comes to mind) just the way they were because they knew that the medical world, our government and the everyday folks out there needed to realize how horrible this disease really was. Their efforts were effective and guess what? There was no socializing involved whatsoever - no parties, no famous photo opportunities, nothing like that - only people fighting for what was needed for those sick and dying. Yeah, that basic, that simple. After all, isnt that all that's really needed in the first place to begin with?
Whether addressing those Hiv/AIDS activists who are part of the public mainstream or those heavily involved in the internet support groups, there really isn't much difference between the two kinds (or those who are active in both mediums) when it comes to personal agendas, misconstrued priorities and the like, because they all basically share the same identical shortcomings. However, a person may notice it more often online because some of the internet activists sound very much like broken records with their "Look at me!!! Here I am, Here I am!!! Look!!! LOOK!!!! sophomoric mentality. Yeah, it really is that bad most of the time. Actuallly, it's literally physically nauseating to deal with at times because you'll see this-or-that one hyper-spazzing all over the place and when you ask them about the issues they are suppose to represent guess what you hear? "What issue? I thought this was about me?" to which I always ALWAYS respond "You know, you're absolutely correct, pardon me." There are a few more bones I need to pick with some of these so-called activists.
Over-glorification of being Hiv+ and/or having full-blown AIDS. Allow me to make the following crystal-clear first - when it comes to sharing our thoughts and experiences with each other and helping each other along the way, especially for those of us with Hiv/AIDS, I think that's one of the most positive, crucially beneficial things that any of us can do with each other - help each other along the way. In fact, I cant think of anything more beautiful than just that. Even in regards to folks with other diseases, or those whose lives are affected by a myriad of other circumstances, nothing can be more profound than reaching out to provide help, comfort and moral support to others who have been there or who are traveling the same exact path. There is nothing wrong with this whatsoever. I have no problem with any of that.
However, what I do have a problem with are those Hiv/AIDS activists who continuously, without fail, day-in-n-day-out, like friggin clockwork, claim that being diagnosed as Hiv+ and/or having full-blown AIDS is the "greatest thing in the world that's ever happened to them!!!" because it helped them straighten their lives out, get their shit together and made them better people. Hey, maybe it has done all that for them and if that is indeed the case, I'm extremely happy for those people; however, why cant such people realize that when they jump up--n-down making such exclamations, they are also sending out the mixed message that it's perfectly okay and totally cool to become Hiv+? Once you tell that to them they automatically turn into denialists and vehemently claim "Well, we're not saying that it's okay to become Hiv+, we're just sharing our experiences and showing that you can lead perfectly normal happy lives with this disease." Yes, that is true, SOME people can lead perfectly normal happy lives with this disease; but, NOT ALL OF US. There are MILLIONS of people out there who like myself know all too well that having any type of chronic, life-threatening disease can be a major pain-in-the-ass in one way or another and to PRETEND otherwise is not only unrealistic, but let's face it, you might as well be asking the Angel of Death to do "The Hustle" with you.
There are those people who have much more fortunate medical and financial circumstances than the greater majority of us have and good for them, more power to them; but, for such people to emphatically, religiously and repeatedly claim "Well, this is how it is for us, so that's the way it is for everyone else too, there is no other way out there" and "If your experiences arent the same as ours, then we have no use for you in our little circle" well, that's very wrong to treat other people that way as well as downright whacked in the head. It's people like that that those of you who are unfamiliar with these Hiv/AIDS internet support groups need to be very careful of. Some of them are relentless at sucking you into their own little world and if you do not play their games, by their rules, they will take you to task repeatedly, without fail. They are the equivalent of what is known as "psychological vampires" because if you do not honor the hierarchy system within their groups - 1st - them; 2nd - their closest friends; 3rd - their group administrators; 4th - the Hiv virus and AIDS - they will thoroughly castigate you because in their world, it's not about Hiv/AIDS, it's about them and them only FIRST - everyone and everything else is secondary. Yet, these are the type of people we should trust the future of the Hiv/AIDS activism movement with? I'm just so damn thankful I steered clear of people like that years ago because if I hadnt, I dont think I'd be alive today to talk about it.
Although I firmly believe that we Hiv'ers can learn from each other regardless of our circumstances and other such criteria, such as how long we've been Hiv+, what are our T-cell counts and the like, yet another issue I have with some of these activists who are both mainstream and/or frequent the internet support groups are those who literally claim that just because they've been Hiv+ for up to 1 year on up, have a few extra bucks in their pockets, and associate with this-or-that public figure, the entire world should bow down and honor them as the next new wave of AIDS Gurus. Oh really, that's all it takes, heh? I think we need to do a quick reality check on that one. Take someone like me, for example....going on 22 years of being Hiv+, who has most likely experienced more medical trials and seen more death than the average Hiv'er of today, yet I'm expected to set aside all that life experience to make way for a younger, less-experienced Hiv'er and adopt the following stance,"You know, because you were born with a silver spoon in your mouth and because you had your picture taken with this-n-that person, I am just so in awe of you, please let me bow down to you, you Master-of-the-Hiv/AIDS-Universe you??" Look, I'm very openminded towards sharing thoughts, ideas and personal experiences with any other Hiv+ individuals and/or PWA's out there, regardless if they've had the disease longer or not as long as I have; but, when someone is going to demand that I give them my blessing to be as pompous, arrogant and self-righteous as much as they damn well please, based on how much their yearly income is, as well as who they do or dont know, well sorry, but this homey just doesnt play that way. If you want my focus and my respect to be on what you have to say, you have to earn it, fair-n-square. Sorry, there are no exceptions to this rule.
Finally, the issue of stigma. This is something that is nothing new to us Hiv'ers and PWA's, it is something that we have grappled with and fought against ever since day one of being diagnosed Hiv+ and/or with AIDS and I think that we need to continue to remain firm on our stance in our demands for equal respect and equal treatment like everyone else on this planet. But the thing that I feel sets us back the most on this issue, regarding some of my fellow Hiv/AIDS activists, is that some of them will literally whine and bellyache about how awful-n-cruel this-n-that form of stigma is, yet at the same exact instant they're too damn preoccupied with their own agendas to even notice the stigma taking place around them in the first place. Those of you who behave in this manner really do need to stop, take a coupla steps back and circumspect yourselves before going any further. Like I've said before, my tolerance for ignorance in the human race is lessening greater and greater with each passing year, especially when it comes to issues like that one.
I'm very glad that I've voiced my concerns-n-issues regarding my fellow Hiv/AIDS activists as well as the internet support groups for us Hiv'ers and PWA's because the issues I mentioned in this piece have been bothering me for quite some time. I dont have an easy solution to any of the concerns I wrote about today but I do know that as long as we as a collective whole are committed and united to giving our goals our best efforts one day atta time I still think we can make the world a better place for all of us, not just the select few. As for my fellow Hiv/AIDS activists, both mainstream and internet-wise, not every single one of them falls into the categories I mentioned in this piece. There are a tremendous amount of activists, from ones that have been battling Hiv a decade or so longer than me, to those who've been infected for up to1 year or more who are some of the most extraordinary, decent and loving individuals I have ever known in my entire life and I feel extremely fortunate to know them personally. In other words, I'm sending a special shout-out of "Keep up the great work!" to those in Minnesota, Nebraska, New York, Pennsylvania, and all points North, South, East and West.
As for myself as an individual, the issues I addressed in this piece are mere signaling flags that I really do need to get out there on the mainstream frontlines sooner versus later because when it comes to doing a job and getting it done right, tis far better to get off one's tuchus and do something about the situation versus sittin' on the sidelines pissin-n-moanin about other folks shortcomings and/or inadequacies. In that particular regard, I think if people would just stay focused and not lose sight of the main objectives when it comes to Hiv/AIDS activism, rather than making it all about themselves, I wouldnt have a problem with it all; but, since that is not always the case, I think there comes a time when we all must stand up and make our own stance. For myself, that time is nearing closer with each passing day. Thank you for reading.
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