Mark S. King

Written By Charlie Ocean
 
 
 
 
“What is not as well documented is how we as a community rose up. How we as a community decided that in the face of no medications, no science, no compassion, we decided to turn that inward and have compassion for one another.
In the absence of food programs, we loaded up the trunks of our cars with food. In the absence of housing programs, we pitched in to pay people’s rent. You know, we, we just did it.”
— Mark

This week, Mark S. King (he/him) shares how the landscape of HIV/AIDS has changed over the years since the AIDS crisis of the 80s and what it's been like for him, having lived with HIV for four decades. In this episode, you will learn 1. Why is it essential to fight against HIV criminalization, especially considering the injustices and stigma it perpetuates, particularly when it's used vindictively in personal disputes and can lead to unjust labeling as sexual predators 2. How not having access to basic services like transportation can impact our health and health outcomes 3. How he initially felt about folks making comparisons between the AIDS crisis and COVID-19 and what he thinks now

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Full Transcript

[00:00:00] Charlie Ocean: Well, hello there. I'm Charlie Ocean, and my pronouns are they/them. Welcome to Allyship is a Verb, a podcast for people practicing allyship for the LGBTQ+ community and beyond!

[00:00:26] Mark S. King: Hi, I am Mark S. King, and my pronouns are he and him.

[00:00:30] Charlie Ocean: I want to say a quick shout out to Aaron! (voice echoes) Aaron, thank you so much for supporting the Indiegogo campaign. I appreciate you.

Mark is an award-winning blogger, author, speaker, and HIV/AIDS activist who has been involved in HIV causes since testing positive back in 1985.

King was named the "2020 LGBTQ Journalist of the Year" by the National Lesbian and Gay Journalist Association, which also awarded King their "Excellence in Blogging" honor three times since 2014. My Fabulous Disease, his blog, won the "2020 GLAAD Awards for Outstanding Blog" after five consecutive nominations, and was named one of 2020's "Out 100" by Out Magazine.

Some of you know I have a list on one of my websites, (laughs ) cause I have like 20 million now, of various LGBTQ awareness events across the year. Some of them are because of important intersections and not explicitly LGBTQ+. September 27th, the day after my conversation with Mark, was National Gay Men's HIV and AIDS Awareness Day. There are over 12 HIV awareness events across the year, including World AIDS Day, that folks may be more familiar with.

Mark has been living with HIV for over four decades, and he is no stranger to loss since the AIDS crisis. At the time of editing this episode, an openly queer and HIV positive journalist, Josh Kruger, was murdered. Mark wrote a post about it on his blog, called, "The Day After He Was Murdered, I Got A Card From Josh Kruger." I'll be linking to it if you want to read more.

Here are three self-reflection questions for you to think about while you're listening, and be sure to stick around for three more after the conversation.

1. What do I know about HIV/AIDS? Is my information current?

2. Do I have any identities that bring me shame?

3. Have I intentionally sought out personal stories of individuals living with HIV?

And now our conversation.

So you are a gay man living with HIV, who is also in recovery from addiction. What do those intersections mean to you?

[00:03:15] Mark S. King: They are all part of my identity. They are all things about which I will not be ashamed. And they're interconnected in that gay men have a higher incidence of HIV; gay men have a higher incidence of drug and alcohol abuse. So, it sounds like I might be a cliché, when in fact I'm just a normal gay guy living my life.

[00:03:40] Charlie Ocean: What do you feel like was instrumental and, and perhaps it was a series of things, to help you get to a place of not feeling shame?

[00:03:48] Mark S. King: Now that's a big question in terms of shame. You know, I've been reading about shame lately. I've always said that I have a certain shamelessness, and I guess by that I mean I will not be shamed about that which I should not be ashamed of.

I remember being a teenager and kind of coming to terms with my sexuality. And thinking to myself, "Well, if this is all right, I'm not going to be ashamed and I'm not going to hide it." Which was an interesting choice in 1977 in Bossier City, Louisiana - much to my family's chagrin - but there you have it. I, I don't know why, I just came this way.

[00:04:34] Charlie Ocean: Sounds like it's served you well.

[00:04:35] Mark S. King: It has. It made for some interesting writing.

[00:04:38] Charlie Ocean: You told me in a conversation before today, "Please do not define us by our great tragedy because that's how we're often viewed." What should the narrative around HIV be?

[00:04:51] Mark S. King: One of victory, in many ways. One of resilience and care and love.

Now, that is not to dismiss the tragic narratives around HIV, but they are well documented. What is not as well documented is how we as a community rose up. How we as a community decided that in the face of no medications, no science, no compassion, we decided to turn that inward and have compassion for one another.

In the absence of food programs, we loaded up the trunks of our cars with food. In the absence of housing programs, we pitched in to pay people's rent. You know, we, we just did it.

I always tell younger LGBTQ people, "This is your history. It lives in you. This is something about which you should take personal pride in. You can hold your head up a little higher, knowing that you come from a people. You are part of a people who did this; who did these heroic, incredible things." And changed the world, changed science, changed the patient-doctor relationship - changed profoundly during the AIDS crisis.

All of those things we did for ourselves when no one else would. And I think that the narrative of AIDS doesn't focus on that enough. It's easy to go for the drama. It's more nuanced when you look at what we were able to accomplish for one another during a terrible time.

[00:06:30] Charlie Ocean: What do people get wrong about the AIDS crisis that seems to be perpetuated today?

[00:06:36] Mark S. King: That it is purely a white gay man's disease. I worked alongside, from the very beginning, Black men and women, trans women. Again, the popular media narrative is one of these, you know, tragic, privileged, white men who the camera just seemed to find, you know. And it's not that we weren't out there and it's not that there weren't great numbers of us because that is true, but we were not alone.

We were not alone in who was affected, nor who was rising up and doing something about it. We are still trying to dig out, excavate those heroes, those people who did not look like me.

[00:07:22] Charlie Ocean: Because your advocacy work spans several decades, how have you seen the landscape of HIV/AIDS awareness and activism evolve over the years? And what do you consider to be some of the most significant milestones?

[00:07:35] Mark S. King: Wow. Milestones. Good - gee whiz. (Charlie laughs) Let's see, well, the initial milestones were just getting public awareness on our side. And this was early on 1984, '87, '89, when we had to change this narrative from "diseased pariahs" to - you know, it's funny, there's a conversation to be had about whether or not the AIDS crisis helped us or hurt us, as a community, in terms of how we were viewed in the public sphere.

An argument could be made that we were tragic victims. And in being so, we created more empathy towards us. People didn't like the sight of beautiful young men dying tragically and horribly and being disfigured. And then there were those of course, who said, "Well, see, we told you, God hates you." you know, what was the trade off there and what was the balance of it?

I'd like to think that had it not been for AIDS, we would probably have ended up in a similar place politically, socially, in terms of, you know, marriage equality and all of those things. I think that we would have moved in that direction regardless. We just had to walk through this gauntlet anyway. It's just what happened.

And it toughened us up and it taught us a lot about political advocacy, about standing up for ourselves, about caring for one another. We became a little less self-centered. And so there were lessons to be learned along the way. And I certainly don't deny those lessons. It is what it is, it is what happened, and it is what we had to go through to get to where we are.

So there was that initial milestone. Certainly there was the milestone of new medications that were actually successful in 1996. I was diagnosed in 1985, so I had to make it 11 years at least, because I, you know, I tested positive my first test and we don't know how long I had it, but I had to live with HIV for over a decade with no medications that were truly, you know, effective.

And it wasn't until 1996 when the drug cocktail was introduced, that we started getting up out of our deathbeds and having a shot, having a shot at the rest of our lives. That was a profound milestone for several reasons, mostly because obviously the science and the medications finally caught up and saved our lives.

But then it was also true that a lot of long term survivors like myself, who had been living life in two-year increments, who had emotionally prepared ourselves to die, find out we're not. You know, my life has been in many ways defined by this sense of, you're gonna live, you're young, you're happy, it's gay, you're 21, everything's fabulous, you live in West Hollywood, you've got a boyfriend, everything's great - oh my god, you're gonna die.

Oh no, wait a few years later, you're going to live.

I remember feeling so confused and in some ways angry. The rug had been pulled out from under me again, and then feeling guilty that I didn't feel grateful - (laughs) very confusing emotions. And so that was certainly a milestone. We all had to contend with the practical and emotional fallout of renewed health and a future that we hadn't counted on since we were kids.

That was profound. And then overall, when you look at the advocacy landscape, gay white men got what we came for. We got the meds. We got all the social services. We got, you know, effective treatments. And then we left the playing field. And we went off and enjoyed the rest of our lives and got gay married and moved to the suburbs and adopted or whatever we did - we got on with it.

But we left behind everybody else and including, again, black men and women, trans women, people who had been at our side, maybe silently because the focus was not on them, in a societal way, in a media way. And we left those folks behind, who now have to fend for themselves, by and large. You know, I've always said advocacy is driven by those with the most to lose.

These days, when you look at the HIV landscape and advocacy, it is driven by Black women. Again, that's great. That's progress. But it is also almost by default. They had to step into this vacuum when gay white men left. Did we all leave? Of course not. I didn't leave, other people didn't leave, but a large part of us left and a lot of our rank and file left. And I take great pleasure and pride in seeing the ascension of Black women in our advocacy landscape in HIV.

And they were always capable. They were always perfectly capable of doing those jobs, but now they have opportunities they did not have before. And they are teaching the rest of us. They've always been my mentors and my teachers, Black women, from the beginning of the AIDS crisis. And they were also my mom. They were also my nurturer, you know, they were my shoulders to cry on. They very much represented to me the motherly nurturing figures that I needed as a young gay man out on my own, living with HIV and scared to death.

That is a way in which it has evolved over the years. I just went to the United States Conference on AIDS. The vast majority of attendees were Black women. It was actually a tribute to Black women this year, but the attendance hasn't changed in years, it's always, in the recent years, been majority Black women.

It's a tricky thing, because In order for me to stay, never before has my own privilege been apparent. It wasn't so apparent to me when I had the first grab at the microphone, when I was the first guy that the newspaper took a picture of, or the person that people just inherently listen to. Well, you know, it's the whole thing about privilege and being a white cis man, right? In other words, I embody a privilege that I'm not even aware of most of the time because it's just what it is. It's what the world has afforded me.

And now it's more important than ever for me to check that. You know, all the organizational meetings I do, all these zoom meetings with various people - it's been a real process. And I always thought "I, Oh, I'm, you know, I'm, (sighs) you know, progressive and whatnot." And it is true because I gained such a great respect and love for people who didn't look like me early on. What I'm seeing now is I have to completely change the way that I view myself in all of this. I have to know when to shut up.

Now, I haven't shut up for the last five minutes, (Charlie laughs) because it's just you and me here, right? But I guess the point I'm trying to make is: I do a lot less talking in those meetings and a lot more listening. It's been a real adjustment.

And it's funny because for the white gay men that stick around in this arena, you know, sometimes we get called out. We are going to have to continue to learn stuff and learn about our place in all of this. I get called out. I just got called out the other day. "How dare you speak for us?" over some particular issue, you know. The presumptuousness that I just have innately has to constantly be checked, you know.

And it's not - you, you don't just turn a switch. It's something that I'm always checking. And if I don't, if I just go on autopilot, yikes, then I'm making a mistake. Then I'm going to start speaking out of turn. I'm going to start commanding a room that I have no business commanding - all of those things.

[00:15:55] Charlie Ocean: What was the point for you that you realized this was a challenge and that you needed to start changing your approach? Like, was there a moment in particular that you looked around and said, "Wow, there are mostly people who look like me having a platform." Or, what sparked that awareness?

[00:16:14] Mark S. King: I think that I've been intellectually aware of it because I have eyes, I'm looking around and seeing this. And certainly I would say again, about the time the new medications hit in the mid to late nineties - success, right? We had kind of gotten the brass ring. We had reached a certain milestone that we had been praying for in the pews of memorial services for a long time. And everybody kind of took a deep breath and a sigh of relief, and a lot of us left.

And I think it was around that time that I looked around and went, "Oh, wait, we're not all benefiting." (laughs) We're not all benefiting equally because of course, healthcare is fucked up in this country and it's not available to everyone in equal measure. I saw the - how the landscape was beginning to change.

And then more and more, I would go to conferences of criminalization - HIV criminalization is a great example. The HIV criminalization movement is fighting against a system, a judicial system, that is inherently homophobic and racist. You know, "How dare you as an HIV positive person have sex with someone else? Period. Let's find laws to put you in jail, even if you're on successful medication."

But what if you're not? And what does it matter? And how, you know - it's all about body autonomy. It's about a lot of things, but mostly it's about scary Black men running the countryside, having sex with white women - Black men who are HIV positive. That's the image that was kind of the face of HIV criminalization for a long time. And what I saw in that movement and as conferences began where people started fighting it was a sea of Black men and Black women . And I realized I am really in the minority here.

But it was based on a deficiency of justice towards people who didn't look like me. And I think that it was around the time of my involvement in the HIV criminalization 20 years ago that I realized, "Oh, this really is a country of the haves and the have nots." I mean, this is something that we continue to rediscover (laughs) about the country we live in and how it treats people differently, you know, and that was another example of that.

But again, I also saw who was leading that movement and how inspiring that was. And I had a lot to learn and I - you know, obviously I still do.

[00:18:51] Charlie Ocean: What are currently some of the lesser known challenges that individuals living with HIV face on a daily basis, and how can we as a society better support them?

[00:19:03] Mark S. King: The failure of our healthcare system. The fact that our healthcare system is built on access and resources. Who has insurance? How good is that insurance? Who has a car? I have a friend who eight years ago died, because he didn't have a car. And so he had to make choices between when he could get a ride from somebody, where that ride would be. Would it be to the grocery store or would it be for his clinical appointment? Would it be to a pharmacy where there would be a co-pay that he couldn't afford?

He died of AIDS. Died of AIDS, you know, in this day and age because he didn't have a car. Yes, there's terrific stories about, you know, vaccine trials and two pills a day and, and "Hey, get your pills and a shot now." Those are remarkable developments. If I wanted to, I could just be happy about that and stop my advocacy and go do something else and enjoy my golden years.

And I just can't. Personally, I just can't. I'm no - it's not like I'm a saint. I'm just saying it's so infuriating to see that these developments and the access to these medications and all of that is based on a racist system that rewards those with resources and kills those without them.

[00:20:38] Charlie Ocean: I'm thinking about when I was earlier on in my college career, if you want to call it that, I remember having, every now and then, a guest speaker come and talk about living with HIV. And sometimes I know through hearing of other people's experiences, they would even show the drug cocktail that you mentioned previously, like, "I take this at this time, this at this time, etc." Like, go through the whole list.

Do you think programs like that were helpful in terms of educating people about HIV/AIDS, or what has been the general consensus around that?

[00:21:17] Mark S. King: Yeah, sure. I mean, I do it all the time. Some of my favorite speaking engagements - on a yearly basis, I go to American University and speak to a class, it's a queer studies class, and they're studying the 80s. And so the professor, whenever they get to 1985: bring in Mark. (laughs) And here I come, you know, with my PowerPoint, my pictures and my slides to tell them all about what it was like and what happened.

And I've been doing that for a very long time. You know, I've been doing that since I would speak to audiences and no one in that audience had ever met someone living with HIV. Lived experience, let us speak for ourselves, you know, nothing with us without us. All of those - there's a big movement, I don't know, well, there always has been - for people living with HIV to speak for ourselves. Where is the person living with HIV on that board? Where is it in the, you know, client advisory panel?

I think that if I have to look at another panel put out by Big Pharma or whoever it is, about some aspect of living with HIV, and look at a panel of academics and doctors and no one - I think I can write it in my sleep, the email to the people going, "Really? (Chalie laughs) Nobody with HIV? Okay." And they'll say, "Well, this is a medical discussion." Yeah, I know something about that. I am a, what you call a consumer, and a informed consumer.

Any opportunity for a person living with HIV to speak for themselves is a win.

[00:22:56] Charlie Ocean: Because you've been speaking for so long, how have the questions changed over the years?

[00:23:01] Mark S. King: Uh-huh -

[00:23:03] Charlie Ocean: Or have they?

[00:23:05] Mark S. King: Well, I will say this. You haven't said, so take me back to 1985 and tell me about that test result. What was that like? What was it like living there? People want to go there. And I understand why. Again, it's the drama quotient and I can paint you a picture. I've written about it many times. It was, you know, horrific and it was beautiful in ways and all of those things. And I can tell you about my four best friends and how they each died. And they're all horrible in their own ways. And a lot of those stories I can't tell in detail without getting choked up, which an audience loves, you know?

So I see the attraction of wanting to take me back to that place. And I don't mind going there, but when you say, how have the questions changed? Some of them never change. You know, I've done questions, I've done many interviews about my book, and they always want to go there. Well, and it's true that several of the essays in my book, "My Fabulous Disease, Chronicles of a Gay Survivor," a lot of those essays take you back there, paint you a picture of that time.

And because that is part of the tapestry of my life, there are many, many other panels in that tapestry, and so the book goes to those other places too. I guess I will always be, and this is by design, I will always be defined by being a long-term HIV survivor. It's how I define myself. So I guess I'm not knocking it. I just am always looking for opportunities to fill in the blanks, talk to you about growing old as gracefully as I can as a gay man, talking to you about what the lessons of recovery have been for me, about finding love late in life; other facets of me as a human being.

Extra points to you for not asking about the year I was diagnosed and paint you a picture of how terrible it was. Although (laughs) I say that - I'm filled with contradictions - I say that, but I don't mind telling the story at all, especially to people who weren't there, who are willing to hear it. And you and anybody else under 40, under 30, got your own shit. Everybody's got their shit, you know, every generation. Tragedy is not a contest and I am not gonna, you know, hold up mine as some, you know, something that was more awful than you can imagine or that you will ever go through because God knows people have been through worse, you know.

And it might be a small tragedy, just to them. It might be abuse. It might be a car wreck. It could be the death of someone close to them and terrible - everybody's got their shit. And so I don't think I went through all of that unless it was to have more empathy for other people and their stuff, whatever their stuff is. Otherwise, what the hell was it all for? What, just so I can sit around and go, "Boy, in my day, let me tell you about my friends that died. Do you think you had it bad?" No, no, it's to turn it around, take that which is inside me, turn it out and say, "Tell me more about you."

And I have conversations with people and I draw out of them something, you know, and maybe it's something difficult or whatever, and I'm able to display and feel genuine empathy toward them; without playing the AIDS card, "Oh, well, let me tell you about what I did, what happened to me -" no - and just be with someone else in their moment.

[00:26:42] Charlie Ocean: As a writer, we can be very intentional with the words that we choose, so I'm curious about - because your book just came out September 1st, 2023 - why "My Fabulous Disease"? Of all the words you could have chosen, why was that the one that you went with?

[00:26:59] Mark S. King: (laughs) I'm so glad you asked that question. You know, it's funny, (laughs) branding - we gays are great at that - and it was provocative. And it's been the name of my blog for a couple of decades now. And it seemed a lot more provocative 20 years ago or so when I started using that as the name of my writing.

I got tired of all of the negative baggage thrust upon those of us living with HIV, as if we had to take on all of these negative characteristics, all of these words that they use to describe us. I decided that if HIV is going to live in me, it's going to take on my characteristics and not the other way around.

[00:27:45] Charlie Ocean: Something that I've experienced over my years with all of my advocacy work is, sometimes feeling like I'm not doing enough. Even though if I looked at a list of all of the things I've accomplished in my life, different places I've gone and spoken at, awards, all of it, you know, there can still be this voice that pops up in my head and says, "You're not doing enough."

Is that something that you've ever had to work through?

[00:28:10] Mark S. King: Yes. Yes. In a word: yes. And let's put on top of that imposter syndrome. People think I'm better than I am. You know, now a lot of my imposter syndrome has to do with being a recovering drug addict and for many years trying to function as a drug addict and showing up for things and covering, covering, covering.

And if they only knew, this whole house of cards of mine would come crumbling down. That adds a layer to that sense of I'm an imposter, I'm a fraud, right. I dealt with that by writing about it, (laughs)  by writing very honestly, as honestly as I was able to, about it. You know, people have said about the book, they say one of the common threads, someone was saying, is not hiding all my scars.

I'm hard on myself, they say, and I don't think that I'm hard on myself I think that I'm simply not covering; I'm not covering anything. I have faults. I'm self centered. I'm a media whore. I like the spotlight. And that's another theme that people have pointed out is that I'm kind of always searching for a stage, you know, all my life. I'm a frustrated actor. And a lot of that has to do with growing up gay; we're performative. We are performing from the time that we realize that we're different and try to cover that up, right. So we are performative anyway.

In my case, a lot of it was self-seeking and a lot of it was self-validating and all of those things. But then I finally found a stage where I could have purpose, where there would be meaning attached to it. And then that clicked, you know. I'm not sitting in an HIV clinic every day, all day long, testing people and delivering results; or handing out condoms at circuit parties, or whatever - all of those things; or sitting in legislative meetings trying to get legislation that gives us more funding.

I don't do any of that. I don't do any of that. I mean, yes, I have my lane. I have my lane, but my lane affords me an awful lot of downtime, (laughs) a lot of downtime. And I do appreciate the fact that I've found a niche for myself and have built a voice and a platform and all of those things. And I don't discount that at all, but let's get real. I am not a case manager working every day, advocating on behalf of their client, to try to get them on Medicare or try to get them in a trial or, you know, case after case after case all day long.

I go to conferences and I'm amongst people like that and I am in awe. Boy, talk about feeling like a fraud. You know, they're congratulating me on my book. Thank you, but could I be doing more? I think so.

[00:31:04] Charlie Ocean: I've definitely wondered about the history of the term "bareback" and I've wondered, much like my fabulous disease, if it's like a branding thing just so it's, like easier to find (laughs) that kind of pornography or writing or things like that.

[00:31:17] Mark S. King: Oh, absolutely.

[00:31:18] Charlie Ocean: You know, I've been afraid to look it up because I've been sure that I would just mostly get porn more than anything else - and that's not a bad thing, but I wouldn't be getting my answer. (laughs)

[00:31:26] Mark S. King: Right, right. No, "barebacking" was popularized, I believe it was a New York Native article - I cannot tell you the derivation and where it originally appeared. But it certainly became part of the popular lexicon when Paz Magazine did a story on it with a guy lying naked on top of a horse and it was called, "They Shoot Barebackers, Don't They?" and it was about our visceral reaction to people having sex without a condom.

Now let's keep in mind that if people stopped having bareback sex when everybody thinks they should have, HIV would have been stopped completely in its tracks, right. It would have gone away. There has always been, probably a simple majority of people throughout the crisis, including in the 80s, which people view as a period of great sexual austerity, which it was not. We were fucking each other's brains out, many times without condoms.

It was our big fuck you to AIDS. To be able to have sex, have connection, feel another person in spite of what was going on. That's how it was popularized, I believe.

[00:32:44] Charlie Ocean: What advice would you give to people who have recently been diagnosed with HIV, especially in terms of coping with any initial shock and fear?

[00:32:55] Mark S. King: That you are going to have initial shock and fear. It is a major life event, and there are going to be a lot of very well-meaning people who are going to say, "Oh, don't worry. Oh, don't freak out." You know, I will (laughs) flippantly tell people "You couldn't pick a better time to become HIV positive." And it is true in terms of what medical science has available to you.

But, with all of those well-meaning people, they are well-meaning, but they're discounting the profound impact of the diagnosis. Because sure, medically, you're well off. Sure, you're probably going to get your viral load under control within eight weeks. And then go on and live the rest of your wonderful life.

That's true, but you're also going to face enormous social stigma. You're going to be dismissed and relegated to those who are the sexually worthless; or undesirables. Social labels are going to be thrust upon you, including "stupid," "careless," "ignorant," "how could you," "what were you thinking?" and what they were thinking is they were thinking like a human being, right? But you will be judged.

And that is something that you will need a good therapist for, or a good friend, or make friends with other people living with HIV who have been through that. Because it's not all roses. Just because we have great medications and stuff doesn't mean that you're not going to feel a lot of things, including the weight of the judgment of other people. That is undeniable, and it sucks, and you're going to have to deal with it.

You're going to get rejected. It comes with the territory if you happen to be living with HIV. You can do everything you can to try to educate people. But back when I was single, I decided I will be an educator or I will be a trick, but I will not be both. I am not going to sit there beside your bed and trying to convince you that I pose no risk to you so that I can fuck you; I won't do it. I will educate you and then say goodnight. At any rate, you are going to face ignorance, some of it willful, and it sucks. It is the way it is.

We have had two generations of abject fear over HIV, and very well chronicled what it did to us, and what it continues to do, we see thousands of people every year in this country die of AIDS. It will take a long time for the education and for that fear to be alleviated, if not put away altogether.

I try to have a generosity of spirit toward people who are still afraid, especially if they came of age, being terrified. I have to have a generosity of spirit. They may not understand it all right now, or maybe they understand it intellectually, but they're still afraid. It will take another generation or so for that to be alleviated. You know, I'll do all I can in the meantime, but we may have to wait it out.

[00:36:14] Charlie Ocean: Thinking about people who are living with HIV and aging, part of it, you mentioned earlier, you shared about how there was a point at which you didn't think you would live this long. What are some of the unique challenges faced by older individuals living with HIV? And are there resources or support available?

[00:36:33] Mark S. King: The big topic these days is aging and HIV. We seem to physiologically age faster than other people. And the reason is, is because our body has been fighting a virus. Imagine if you had the flu for the last 40 years, it would wear on you.

It would wear on your body. Your body will just become exhausted or your body would be spending all sorts of resources fighting that virus when it could have been doing other things. And so the rest of your body suffers as a result of it. Cardiovascular disease, all sorts of other things that happen to us when we age; people with HIV seem to be getting those sooner because our bodies are just exhausted.

You may not feel like it, but it's what's going on inside, right? Just because I have an undetectable viral load doesn't mean that I don't have viral particles swimming around in hidden places that my body is constantly having to battle. That's what's going on.

And it's funny, (laughs) it's like I am part of a generation that has been studied since the beginning. You know, I tested as soon as you could - there was a test. "Oh, well, Mark is HIV positive. I wonder what will happen to him. There are no medications. Will he live? I wonder how long. Oh, now 10 years later, Mark is on medications. That's great. I wonder how toxic they are and what they'll do to him. Let's find out. Oh, now Mark is 62 years old and he's been fighting the inflammation in his body from the HIV now for nearly 40 years. What happens next? Let's find out."

So they have been keeping an eye on us since the beginning. And yeah, would it be great to live, you know, if I had been in the next generation, so I could benefit from everything they're learning from people like me? Yeah, sure. I'd, I'd like to be 30 years old, you know, why not? I'm not, and here I am and what they learned from me and people like me will help the next generation. And that will have to be good enough for me.

Sometimes I wonder, because our advocacy is so great, is so strong, that we'll never be satisfied until they figure out to help us live forever. (both laugh) You know, it's like, it's not enough that we're still alive 40 years later, now we want to know how can we live a normal lifespan? No, wait a second, can we live better than a normal lifespan? (laughs) We're a very ambitious group, those of long term survivors like myself, we've seen a lot of shit. And, we would like to keep seeing it for as long as possible.

[00:39:14] Charlie Ocean: There have been some folks who have lived through the AIDS crisis that now have been faced with the pandemic. And there's been some comparisons in terms of a lot of loss of life, but also in terms of how the government has responded and reacted. For example, there's been folks who have already been distrusting of organizations like the CDC.

Has this pandemic brought up anything for you in terms of any of that?

[00:39:44] Mark S. King: Yes, it has. You know, it's funny because I have - my opinion, my view of that has kind of changed as the pandemic changed. For instance, there was a lot of comparisons to AIDS early in the COVID pandemic, which I resented. You know, don't you dare compare this to AIDS because AIDS would be as if everyone with COVID who died lived in your town. That's how specific AIDS was for me.

And then I realized, wait a second, we compare and contrast all the time. It's how we learn. So I'm not going to fault anyone for doing that very thing. And there were in fact, many similarities and very, very weird, disturbing parallels. A new virus, a new condition, a new disease that suddenly is killing people, and now it's killing more people, and now it's killing more people, and now it's killing more people.

That sense of, "Oh my god, how bad was this going to get? Are we all going to die?" You know, I mean, something could come along and just wipe us all out. Is this it? And so I definitely had this sense of déjà vu and post traumatic. I started feeling some way in my gut that I hadn't felt in decades.

On the one hand, we were trying to distance ourselves by saying, "Oh, but AIDS was different and this is how." You know, and tragedy is not a contest. People are going to be affected by all sorts of things and it's going to be in different ways and it's going to feel familiar and it's going to be different. All of that is true - can all be true at once.

But certainly governmental inaction, kind of the fact that this is all subject to human error, the CDC did itself no favors by going along with the Trump administration and its creative bookkeeping. And a governmental agency that I otherwise admire and depend upon, and we all should - and a lot of this is the destruction of institutions by the Trump administration and the destruction of our trust in things that we once trusted, like the CDC. I hope that they regain it; time will tell.

[00:42:16] Charlie Ocean: Looking ahead, what are some of your hopes and goals for the future of HIV advocacy and awareness? Are there any specific areas or initiatives you want to focus on in the coming years?

[00:42:31] Mark S. King: I think that we still need to fight HIV criminalization. There are still people sitting in jails right now because they dare to have sex; they didn't pass on HIV to anyone. But our laws about disclosure are so antiquated that they don't take into account all of the things that people can do to protect themselves and protect others. And I think that that is such a, just an infuriating injustice, that it's something that we need to keep working on - and we have. We've changed the laws in several of the states. 34 states, I believe, have specific HIV laws about nondisclosure of your status and you're going to go to jail.

And a lot of times these are used by pissed off ex boyfriends when the relationship doesn't go the way they wanted it to, and they go running to the cops saying, "He never told me he had HIV." and then it becomes a he versus he situation, scenario, or often a he versus she, because a lot of times it's heterosexual folks. Who wants to take that to trial? Who wants to take it all the way to trial and sit on a witness stand and explain to a jury why you chose to have sex living with HIV. A jury that is ignorant of the science and probably stigmatizes you, could be homophobic, could be afraid of HIV.

No, you're not going to do that. So what do you do? You take a plea bargain and get labeled a "sexual deviant," something on your driver's license that says that you're some sort of sexual predator. I know people with that on their driver's license because of a pissed off ex boyfriend. So that is something that we need to work -

And the rest of it is, you know, healthcare is a human right, and we have to keep fighting for that so that people who don't have a car don't die of AIDS. And we have to see that, again, those people fighting in this arena have the most to lose. We need to lift them up and listen to them.

[00:44:39] Charlie Ocean: What are some of the trusted resources you find yourself giving out time and time again?

[00:44:44] Mark S. King: I will give out websites in terms of thebody.com, which is the most comprehensive site in that it deals with both prevention and treatment. And so it's got all sorts of information whether you are afraid of getting HIV, or you're newly diagnosed, or whatever it may be. A terrific resource there I started writing for 25 years ago.

And otherwise it just depends on what they're doing. You know, if you are a long term survivor and you're looking for connection and meaning, I refer them to the Reunion Project, which is doing terrific work, building community and a single voice for long term survivors. It just depends on what their need is.

[00:45:23] Charlie Ocean: How can journalists be more responsible in their reporting around HIV and AIDS? And what would you like to see different overall in the stories that come out?

[00:45:32] Mark S. King: I understand that we as writers - I'm sometimes called a journalist, I'll sometimes write in the third person - how much we want definitives and superlatives: the best, the newest, the largest, the this, the that, you know. I, I understand that, but this is such a nuanced conversation to have.

The average person reading might think this is all done and over with, that these new medications are available to everyone, and we're all just, you know, living on one pill a day. There is a tendency to want to be definitive you just can't use in this arena.

[00:46:16] Charlie Ocean: What's one allyship tip you'd like everyone listening to consider?

[00:46:21] Mark S. King: My good friend and a mentor in many ways because she teaches me all the time, is Waheeda Shabazzel. And she is a Black woman who has been around for a while and is so good at leading a meeting. And she has an acronym called WAIT - WAIT. And it means "why am I talking?" I love it because I've asked myself that question sometimes mid sentence during a meeting where I think that I just need to throw in my two cents, even though I'm really just regurgitating what the person before me said.

Who could have been a woman or a person of color, (laughs) but me and my grand sense of just kind of, you know, living in a state of privilege thinks that I need to say it too, or I need to say it in my own way. Why am I talking? Especially when you're in a room filled with people who maybe are more reticent about taking their moment about saying what they want to say - shut up, Mark. Just shut up, be quiet. It's okay. They'll live on without benefit of your remark, whatever it is, especially when it's redundant. Why am I talking?

[00:47:43] Charlie Ocean: In just a moment, mark is going to tell us a little bit more about his book, "My Fabulous Disease, Chronicles of a Gay Survivor." He also has a book called "A Place Like This."

[00:47:56] Mark S. King: "My fabulous disease, Chronicles of a Gay Survivor," is a collection of my work written over the course of four decades. I've been writing in real time about living with HIV, about sex, love, family, all of those things. And I wanted to bring together a lot of my favorite essays, under one umbrella, and that's what this book represents to me. It is a life, and a life that I think a lot of people will relate to. And it's damn funny; in spite of everything, it's funny.

[00:48:33] Charlie Ocean: Mark, thank you so much for taking the time to have this conversation with me, and I hope that people will continue to purchase "A Place Like This," and also check out your new book. I'm also so sorry for your loss, not only someone that you have known and connected with, but also someone who has been important in your community.

HIV/AIDS is still here, and we have so much more medication, so much more knowledge and information thanks to people like Mark, who have participated in the research and fought like hell to still be here. We have a responsibility to ourselves and the community to practice safer sex.

When I have had periods in my life where I've had sex with men who have sex with other men, I've been very fortunate that we now have things like PrEP to help. There are so many programs that make it either low cost or free to you, so please check those out to see if you have one in your local area.

What usually happens is that you meet with a doctor, and you talk about your unique experience, and see if you're a good candidate for it, and if it's determined to be a good fit you get the prescription, and part of the requirement is that you get tested every three months. I don't want to say that this is the exact same experience everywhere, but that's speaking from my personal experience and that of what I've heard from other folks.

I also want to say that, (sighs) I've been teasing this for a really long time, but new merch is finally out on Bonfire. There's a new bookish design, and it comes in either a black text or a white text so that it pops on whatever color that you like. And they look pretty dang awesome, honestly. It's a really simple design, and I think that's great because some of the other ones can be a bit loud, (laughs) if you're not into that. Although they're also amazing in their own ways, but just wanted to offer people some more options.

And that's it for a minute. I'm not gonna try to, like, release new merch, like, all the time here. And, I wanted to make sure people have some different options.

Here are the final three self-reflection questions before you go:

4. Am I aware of how much space I take up in groups? Do I know when to move forward and back so that others may take up space, too?

5. What do I think about Mark's statement, "advocacy is driven by those with the most to lose"? Have I seen a recent example of that?

6. What action can I take to address the disproportionate burden of emotional labor, unpaid work, and advocacy falling on Black women?

Visit AllyshipIsAVerb.com for any resources and a full transcript of the episode.

And remember, sometimes allyship means asking yourself, "Why am I talking?"

 
Charlie Ocean https://www.chrisangelmurphy.com
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