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First Person

Why This HIV-Negative Man Became An HIV/AIDS Activist

stephenlucin_350x350

Stephen Lucin, photo by Thomas Evans

I was never the cool kid when I was younger. I was either the personification of a homophobic slur or the lonely, pensive guy who everyone either loved or resented. But since I graduated high school more than a decade ago, I know that there has been a vast improvement of my own self-image. As an out soon-to-be 32-year-old man, I have known for some time now to stop caring about fitting in with cliques or trying too hard to be cool. I even stopped doing things to please others. So when I was asked to become a part of the HIV Equal anti-stigma social media campaign, it didn’t matter to me what people assumed of my HIV status.

Some people assume that I am HIV positive because of my dedication to the cause. Others say that I have no reason to be a part of it because I don’t understand what living with HIV is like. But there are so many people, conversely, who come up to me, who write to me or who call me to tell me that they appreciate the work that is being done by the HIV Equal team. None of these people ask about my status, and seemingly none of them care. And that is the point of the campaign. To end the stigma against HIV, and to know that regardless of an HIV status, whether positive or negative, that we are all in this battle together. It’s wrong to assume anything of anyone; but it’s right to accept people – no matter their connection to a cause – who give a damn about something so much that they’re working to help make a change in the world about it!

unnamedReal people are fighting a real-world virus of disputed origins. There is no cure, but there are manageable treatments for it. And the purpose of treatment is to keep people alive. What better cause to stand behind than that? To help people who are helping themselves live fuller, better lives; to end stigma so that millions of people around the world can recognize their value despite their HIV diagnosis.

As a participant of the HIV Equal campaign, you have to choose a status word that describes who you are as an individual. My word? Compassionate. I believe that people just want someone to talk to and to share their experiences with. They’re seeking compassion, not sympathy or pity. And I believe that through my own experiences in life, that I have learned to first be compassionate with myself and then to fully translate that compassion into my interactions with others.

Friends and strangers alike have come out to me as HIV positive. I’ve been in a serodiscordant relationship and gone on dates with HIV positive guys. Several of my friends have divulged personal fears surrounding the very idea of contracting the virus, though I’ve helped to quell their concerns. Regardless, I have approached each situation with the same level of compassion that I do with anything in my life, and HIV Equal has helped me to reinforce that quality of mine on a day-to-day basis.

unnamed-2Another important aspect to this campaign, which is a huge factor in my involvement, is to end the fear and stigma surrounding HIV testing. I remember the first time I went for an HIV test. I was so naive and uneducated about the virus that I panicked so much thinking that I was perhaps already positive. I remember sitting there at the clinic, remembering all of my sexual experiences and wondering how many of them would have been “worth it.” Naive, immature, but incredibly human were my thoughts.

It’s quite comical to look back on now, but it’s something that everyone, at some point or another, experiences in their life. And it’s because of this reality that in addition to all of the other work I do with the HIV Equal campaign that I’m also a certified tester for HIV.  I sit with individuals at the HIV Equal testing events and I try my best to make everyone feel comfortable, especially if it’s their first time. I get to hear the diversity of people’s stories, and I learn a little something about everyone involved. It’s been a long time since that first HIV test, and there have been many tests since then. But I’m happy to now know more about HIV, and the difference between the virus and the medical diagnosis of AIDS, that I can sit comfortably while taking a test. And I hope to bring that calm attitude with me to all of the individuals who I sit with at testing events.

Over the years I’ve also received lessons specific to terms related to HIV. For instance, the term “disease” in reference to HIV is only used by doctors, clinicians and other medical professionals. Those who are HIV positive find the term “disease” to be offensive. While HIV is clinically referred to as a disease, socially it is known as a virus that can be managed to allow for a normal life expectancy. Also, the term “clean,” used so popularly among youth who are sexually active, is incorrect. You are not “dirty” if you have an HIV positive diagnosis; therefore it is uncouth, in almost any manner of speaking, to use the term “clean” if you remain HIV negative and/or free of any sexually transmitted infections (STIs).

HIV affects people from all walks of life, and in different ways. For some, it’s a lifelong management of a virus, and for others like me it becomes something to understand and to stop fearing. The people in my life who are affected by HIV know that they can confide in me and that I will be there for them just as I would be for any one of my friends. So when anyone asks why an HIV negative person is so determined to fight the stigma and to attach themselves to a campaign like HIV Equal, it’s compassion that drives me along with the understanding that we are all valuable people. So, no matter what anyone might think about my involvement with HIV Equal, the only HIV status I will continue to identify with is: compassionate.

 

This essay was originally published on HIV Equal.

By:           STEPHEN LUCIN
On:           Jul 16, 2014
Tagged: , ,
  • 46 Comments
    • Teeth
      Teeth

      Any work he did as an activist is decried by his participation in this, the stupidest HIV campaign in the history of hacktavism.

      Jul 16, 2014 at 8:30 am · @ReplyReply to this comment ·
    • Cam
      Cam

      ANOTHER advertisement for HIV equal?!

      Jul 16, 2014 at 10:46 am · @ReplyReply to this comment ·
    • Stache99
      Stache99

      I look forward to hearing about Nick Gruber and when he became an aids activist.

      Jul 16, 2014 at 2:00 pm · @ReplyReply to this comment ·
    • Paco
      Paco

      I had never heard about this campaign before, so I went to their site to learn more.

      “HIV Equal is a national multimedia campaign that aims to end HIV stigma and promote HIV testing by creating a social art movement that changes the way people think about HIV and which reopens the national dialogue about HIV.”

      Looks to be a very worthwhile cause to me that doesn’t deserve any negativity. As someone that has watched friends with hiv go from being treated like dirt by heteros (in the late 80s and early 90s) to being treated the same way by their own community, it’s nice to see there are still some in the gay community that treat them with the compassion they deserve and are working hard to end the senseless stigma associated with the illness. Even if it sometimes seems to be a small minority at times.

      Jul 16, 2014 at 2:07 pm · @ReplyReply to this comment ·
    • Merv
      Merv

      I hope it lasts. Didn’t Larry Kramer start out as an HIV- AIDS activist? They never seem to practice what they preach.

      Jul 16, 2014 at 3:00 pm · @ReplyReply to this comment ·
    • Cam
      Cam

      @Paco:

      Actually as has been pointed out multiple times, this campaign seems to have, as it’s goal, the enrichment of the people who started it. It doesn’t outline any actual concrete goals, just a nebulous “We want everybody to hold flowers and dance”.

      Additionally they used an admitted homphobe in their early efforts.

      Jul 16, 2014 at 3:18 pm · @ReplyReply to this comment ·
    • Paco
      Paco

      @Cam: who was the homophobe?

      Jul 16, 2014 at 3:25 pm · @ReplyReply to this comment ·
    • Cam
      Cam

      @Paco:

      Nick Gruber

      Jul 16, 2014 at 3:56 pm · @ReplyReply to this comment ·
    • Paco
      Paco

      @Cam: Thanks.

      Jul 16, 2014 at 4:01 pm · @ReplyReply to this comment ·
    • vive
      vive

      I think it is a worthwhile campaign. However, the subject’s insistence that it doesn’t matter what people think his status is, rings false in light of the big deal being made of his negative status in this article.

      Jul 16, 2014 at 4:03 pm · @ReplyReply to this comment ·
    • Cam
      Cam

      @vive:

      Great point……Everybody’s equal BUT I’M NEGATIVE!!!!!!!!!!!!!!!!! lol

      Jul 16, 2014 at 4:23 pm · @ReplyReply to this comment ·
    • Stache99
      Stache99

      @Cam: Using him and going out of their way to defend using him basically shot themselves in the foot right out of the gate. Knowing his history it was beyond clear that Gruber was only in this as a way to promote himself and clean his image up. Total backfire though.

      Jul 16, 2014 at 4:28 pm · @ReplyReply to this comment ·
    • Stache99
      Stache99

      @Cam: “it didn’t matter to me what people assumed of my HIV status.” ..Me thinks it does:)

      Jul 16, 2014 at 4:34 pm · @ReplyReply to this comment ·
    • sobedoug
      sobedoug

      “Everybody either has or doesn’t have diabetes. We are all diabetes equal.”

      Yeah, that makes sense.

      Jul 16, 2014 at 4:37 pm · @ReplyReply to this comment ·
    • bbg372
      bbg372

      @sobedoug: If everyone is HIV equal, then it does not matter if one is negative or positive, so why bother getting tested? It is the stupidest idea for an HIV testing awareness campaign ever.

      Jul 16, 2014 at 4:46 pm · @ReplyReply to this comment ·
    • queerT
      queerT

      Kumbaya my lord, kumbaya… I could vomit with all this trite nonsense. Quit taking pictures of yourselves and throwing parties and go hand out condoms to schools whether it’s allowed or not. Every week it’s the same pissing contest with who’s the biggest victim, who’s the most compassionate, who’s the most p.c… Just do something of substance. This is purely a vanity project. “Look at me! Look at how awesome I am because I don’t judge poz people”. Well who does? Some rednecks in Tennessee? The whole stigma issue is blown WAY out of proportion. Getting turned down on grindr is not stigma.

      Jul 16, 2014 at 4:58 pm · @ReplyReply to this comment ·
    • bbg372
      bbg372

      Substitute “HIV” with “diabetes” in the following paragraph and see how ludicrous it sounds:

      “For instance, the term ‘disease’ in reference to diabetes is only used by doctors, clinicians, and other medical professionals. Those who are diabetic find the term ‘disease’ to be offensive.”

      Diabetes, like HIV, is an incurable disease. It is not a value judgment, it is a statement of fact. It is only offensive if one thinks there is something inherently wrong with having a disease.

      Jul 16, 2014 at 5:05 pm · @ReplyReply to this comment ·
    • bbg372
      bbg372

      The author is correct that one is not “dirty” if he has an HIV-positive diagnosis.

      However, his suggestion that it is incorrect or uncouth to use the term “clean” to refer to one who is HIV-negative and/or free of sexually transmitted infections ignores the etymology of the term.

      “Clean” in this sense does not refer to the individual. It is shortened from “clean bill of health” which is “a certificate of health attesting the lack of a contagious disease.”

      Jul 16, 2014 at 5:22 pm · @ReplyReply to this comment ·
    • Paco
      Paco

      @bbg372: yea, because diabetics are frequently the targets of insensitive words like “Dirty”, “Diseased”, “Unclean”. And diabetics are frequently viewed as not worth much of anything because they are no longer f***able without a condom. And people stand around and viciously gossip with their friends about those diabetics that should be completely avoided because they have “the plague”. Right? Or what was your point?

      Jul 16, 2014 at 5:27 pm · @ReplyReply to this comment ·
    • bbg372
      bbg372

      @Paco: I have never heard an HIV-positive person referred to as dirty, diseased, unclean, or unfuckable. Nor have I heard an HIV-positive person gossiped about because of his HIV status or referred to as having the plague. I do not suspect you have either. Like the author, you have likely heard HIV-negative people refer to themselves as clean and interpreted that to mean that HIV-positive people are dirty. If that is not the case, and HIV-positive people are “frequently targets of insensitive” comments like those listed in your post, then by all means, qualify your statements and substantiate your claims.

      Jul 16, 2014 at 5:53 pm · @ReplyReply to this comment ·
    • masc4masc
      masc4masc

      Cool, since we’re all “HIV equal” now, no more poz guys bitching (non-stop) about the neg guys who don’t wanna f*ck them!

      Jul 16, 2014 at 5:59 pm · @ReplyReply to this comment ·
    • Stache99
      Stache99

      @masc4masc: These kind of posts seem to be troll bait. Right on cue here comes masc4masc and his idiotic attention seeking.

      Jul 16, 2014 at 6:05 pm · @ReplyReply to this comment ·
    • masc4masc
      masc4masc

      @Stache99: I’m serious as an opportunistic infection, buddy. I admit I thought this campaign was beyond silly at first, but now I see it throws a giant monkey wrench at all the self-victimization poz guys like to use to try and guilt neg guys into feeling like bad people. #TeamHIV=

      Jul 16, 2014 at 6:46 pm · @ReplyReply to this comment ·
    • Paco
      Paco

      @bbg372: I certainly have witnessed every example I stated. A google search will no doubt bring up similar accounts of poz people that have experienced the cruelty of others over their conditions. But just for the record, I do not consider sexual rejection to be stigma. I know that is the first thing many neg guys reach for when the subject comes up.

      I have to admit that using Diabetes as something to try and make a mockery of HIV stigma is a new one for me though. The only thing HIV and Diabetes have in common is that they are both manageable conditions for most affected by them. Only those living in bubbles of blissful ignorance could claim there is no social stigma in the gay community towards gay poz men.

      Jul 16, 2014 at 8:18 pm · @ReplyReply to this comment ·
    • Cobalt Blue
      Cobalt Blue

      Too many words, I stopped the reading in the middle…The truth is AIDS will always remain as a disease linked with drugs and careless sex and this speaks about ‘ behavior ‘ and no morals. Another demeaning disease is sífilis ( and all STDs ).

      Jul 16, 2014 at 8:33 pm · @ReplyReply to this comment ·
    • Teeth
      Teeth

      1) there is no valid message. Being linked to an STD is never going to be valueless. It is what it is. People do lots of stupid crap that hurts their health. And we are not equal. That’s why we need testing. duh.

      2) Nick Gruber and (worse, imo) Mak’s pathetic yelling at the gay community for taking issue with it.

      3) This campaign is nothing but a publicly funded photo op for the who’s who of the NY queer community. When you give to charity, make sure that it’s one that actually gives something to people in need, M’kay?

      Jul 16, 2014 at 9:29 pm · @ReplyReply to this comment ·
    • vive
      vive

      @Cobalt Blue, your remark smacks of lack of education. Most cases of HIV transmission among gay men occur inside relationships from romantic partners thought to be negative.

      Jul 16, 2014 at 9:35 pm · @ReplyReply to this comment ·
    • vive
      vive

      @Teeth, I can only surmise that you are being purposely disingenuous in pretending to misunderstand the message of the campaign, which is that as human beings we are all equal, irrespective of HIV status.

      Jul 16, 2014 at 9:39 pm · @ReplyReply to this comment ·
    • Teeth
      Teeth

      @vive: I don’t misunderstand it. I disagree with it. In fact, it’s so stupid it’s not even a question.

      Jul 16, 2014 at 9:47 pm · @ReplyReply to this comment ·
    • masc4masc
      masc4masc

      @vive: Relationship is a very subjective word though, especially amongst gay men. Some guys count their Grindr ‘regulars’ (yep, plural) as relationships.

      Jul 16, 2014 at 10:23 pm · @ReplyReply to this comment ·
    • Dxley
      Dxley

      “Everybody has an HIV status. We’re all HIV Equal.”

      No! I’m HIV NEGATIVE and I only date men who are negative as well, but I don’t hate the positive guys, but I want that extra layer of protection that comes with knowing your partner’s negative status. Respect other people’s preferences!

      Jul 16, 2014 at 10:52 pm · @ReplyReply to this comment ·
    • Cam
      Cam

      @vive: said…

      “Most cases of HIV transmission among gay men occur inside relationships from romantic partners thought to be negative.”
      ______________

      Please provide a link to the study that backs this up.

      Jul 17, 2014 at 9:41 am · @ReplyReply to this comment ·
    • vive
      vive

      @Cam, this study found “Sixty-eight percent of HIV transmissions were from main sex partners.”

      AIDS. 2009 Jun 1;23(9):1153-62. doi: 10.1097/QAD.0b013e32832baa34.
      Estimating the proportion of HIV transmissions from main sex partners among men who have sex with men in five US cities.
      Sullivan PS1, Salazar L, Buchbinder S, Sanchez TH.

      Jul 17, 2014 at 10:25 am · @ReplyReply to this comment ·
    • vive
      vive

      @Teeth, @Dcley, so you are saying that you consider yourselves superior human beings compared to someone who is positive? Because that’s what this campaign is about – that we are all equal as human beings.

      Jul 17, 2014 at 10:28 am · @ReplyReply to this comment ·
    • vive
      vive

      @Cam, a discussion of another study by Mustanski et al.:

      http://www.psychologytoday.com/blog/the-sexual-continuum/201106/new-study-risk-and-benefits-serious-relationships

      “This week we published a new study in the journal Health Psychology that found that young gay and bisexual men in serious relationships have nearly eight times the rate of unprotected sex as compared to when they are in casual relationships. The findings provide a new direction for prevention efforts in this population who account for nearly 70 percent of all new HIV/AIDS diagnoses in adolescents and young adults in the United States and who also have the highest increase in new infections. “

      Jul 17, 2014 at 10:36 am · @ReplyReply to this comment ·
    • Teeth
      Teeth

      @vive: //so you are saying that you consider yourselves superior human beings compared to someone who is positive? Because that’s what this campaign is about – that we are all equal as human beings.

      Not a superior human being. A different human one. I’ve made better decisions with regards to my sex life, worse decisions in other areas. The point is, I am NOT HIV =, so when I hook up, I need to be aware of who I am hooking up with. Pretending that we are Equal in our status is fairytale talk. If you seroconverted through consensual sex anytime after about 84, then you just need to own it: You screwed up. Me pretending that we are all the same wont change it.

      And the point of this campaign is a photo op for NY’s whose-who crowd. It does NOTHING to help anyone with anything. It’s an insult to the term “non profit”.

      Jul 17, 2014 at 10:42 am · @ReplyReply to this comment ·
    • Stache99
      Stache99

      @Teeth: “Not a superior human being. I just make better decisions”.

      You do realize you just confirmed Vive’s point. I’m sure in your little world it gives you great joy to think you’re better then others. You’re the main reason for this campaign which is trying to end the stigma and shame which you promote with glee.

      Jul 17, 2014 at 11:20 am · @ReplyReply to this comment ·
    • Stache99
      Stache99

      @Dxley: I don’t see anyone with a gun to your head saying you have to have sex with someone positive. Jeez. Maybe next time take the time to understand the post instead of just talking out of your ass as usual. Really understand why Derekr insults you on every other post.

      Jul 17, 2014 at 11:25 am · @ReplyReply to this comment ·
    • Teeth
      Teeth

      @Stache99: How pathetic you are to misquote me. Anyone who wants to know what I said can read one message up.

      Jul 17, 2014 at 11:48 am · @ReplyReply to this comment ·
    • Dxley
      Dxley

      What the fuck is a Stache999 and why is it replying to my comment?

      Jul 17, 2014 at 12:00 pm · @ReplyReply to this comment ·
    • Dxley
      Dxley

      Well, Stache99, that is. I think!

      Jul 17, 2014 at 12:01 pm · @ReplyReply to this comment ·
    • Teeth
      Teeth

      I will not participate in this polyandry where accepting that there is difference is considered dehumanizing. It’s dehumanizing to pretend that we are all the same.

      If this “campaign” (read:photo session) has something to say something about not discriminating against positive people, it should do so. It doesn’t.

      It says “we are all the same”, which is so dumb downed and dishonest that it lacks any real meaning. Of course we are not the same. And of course we should treat people with respect. We are not financially the same, either. Nor are we fitness level the same, Nor are we measles the same, nor are we artistic taste the same, nor are we moralistically the same. Instead of pretending that we are HIV= (which, in case you haven’t gotten it, we are NOT), it might be smarter to target the real issue of discrimination.

      Jul 17, 2014 at 12:02 pm · @ReplyReply to this comment ·
    • vive
      vive

      @Teeth, you are just inventing false “messages” for the campaign so that you can shoot them down. It is what is called a straw man argument.

      Jul 17, 2014 at 1:14 pm · @ReplyReply to this comment ·
    • Teeth
      Teeth

      @vive: No, I’m calling them on the fundamental flaw in their message.

      Jul 17, 2014 at 4:19 pm · @ReplyReply to this comment ·
    • JDean
      JDean

      waste of energy
      the bareback hoes will bareback, not sure why I have to sing them coombaya.

      And I’m definitely not HIV=, that is about the stupidest thing these hipsters could have come up with. HIV+, especially in 2014, and the age of the internet speaks about behavior, carelessness, lack of morals and character.

      Don’t be mad at others because you made shitty choices in life

      Jul 18, 2014 at 8:24 pm · @ReplyReply to this comment ·
    • Stache99
      Stache99

      @JDean: I’d say the only ones that made a shitty choice were your parents for not aborting you.

      Jul 18, 2014 at 9:25 pm · @ReplyReply to this comment ·

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