Sunday Brunch: HIV, the Navy & China

We are starting out with a slightly more somber Sunday Brunch than usual, we hear two HIV stories. But don't worry, both stories have happy endings. First, Malcom Gregory Scott tells remembers how he was diagnosed with HIV while serving in the Navy. Second, Weston talks about receiving an HIV diagnosis in China and how HIV stigma changed their life. 

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In this episode

Maclom’s Story: 00:53

Weston’s Story: 06:04

Transcript

Weston (00:10):

All right everybody. Welcome to another Sunday Brunch. This week's Sunday Brunch is going to be a little bit, uh, more serious than it typically is. Today, we are going to hear some HIV stories.

Weston (00:27):

First up, we are going to hear the story behind Maclom's diagnosis. This is Maclom from last week's episode. HIV patient, a doctor, and a friendship. I really hope that you enjoyed that story. It's one of my favorite things we've recorded so far. And it's a story that's very close to my heart.

Maclom (00:53):

My name is Maclom Gregory Scott. And, uh, when you asked me like, "How do you identify?" I'm like, "Oh, you know, that's... that's such a big question anymore"

Weston (01:02):

That's definitely a big question. It's huge.

Justin (01:03):

Definitely.

Maclom (01:06):

Uh, I guess I identify as a long-term AIDS survivor, uh, as an activist, as a writer, uh, as queer as opposed to gay. Um, and I identify as a male. I joined the Navy in 1985 as a way to escape AIDS, to be honest.

Maclom (01:34):

Um, a friend of mine asked me if I wanted to move to Atlanta with him. He had a job offer to work as a bartender there. And, uh, he said "I can get you a job as a barback. We'll party." You know, it was a dead man's party in 1985. Everybody we knew was dying. And here we were in Washington, D.C., this kind of serious place. And he said, "Let's move to Atlanta and just have fun." I'm like, "Okay, that's a great idea but I don't know if I'm HIV-positive. And if I'm not HIV-positive, maybe I need to plan for a future. I'm in my 20's, you know, maybe I need to get my life together. I've been partying." So, I didn't have the $400 it then cost to get an HIV test. The only test available was the Western Blot and the ELISA. And they... it cost $400 to get that pair of tests to confirm a negative or a positive. And I didn't have that money.

Maclom (02:28):

And around that time in 1985, that summer, it was a big deal that the military had finally revealed how many people in the military were HIV-positive. And they said they were going to start testing all new recruits. So I said, "Great. I'll join the Navy. I'll go through the enlistment process." The recruiter told me, "You know, if you're HIV-positive, you'll get a letter and you won't be admitted." You know. You had to sign a paper saying they were testing you for HIV, and what have you.

Maclom (03:02):

And I didn't get a letter. I got a letter instead saying, "This is your... This is your call-up date." So I was like, "Oh, I guess I'm HIV-negative." I still had the choice of not enlisting at that point, but I thought, "Well, if I enlist, I'm going to be with a bunch of other people who've also been tested for HIV."

Maclom (03:20):

I did enlist in some part to escape AIDS. And I thought that I had tested negative. It turns out, they didn't the capacity to run all those tests in August. It wasn't until September, October... Months after I was already enlisted that they were able to run all the tests. So, they didn't find that I was positive until two years later when they were discharging me for being gay. Then, in the discharge physical, they discovered I was positive.

Maclom (03:50):

So let me say that more concisely. In 1987, I was discharged in the Navy for homosexuality. And while being discharged, I learned I was HIV-positive. And, uh, with that, what was then considered a death sentence, I returned to Washington, D.C. where my family and friends were.

Weston (04:08):

Cool. Not cool. [crosstalk 00:04:11] Really awful.

Maclom (04:10):

That's the... That's the short version. That's the one you probably really want.

Weston (04:15):

So, when in... You said in 1985 is when you joined.

Maclom (04:20):

I enlisted in '85. Yeah.

Weston (04:21):

Okay. Excellent.

Maclom (04:24):

And I've... I signed up for 6 years, but, um... This guy I had a thing with told them I was gay. Yeah, this happens in the military. You know, then. This was before "Don't ask, don't tell" even. This was when there was a much stricter policy even.

Maclom (04:43):

And so, the slightest hint... The slightest whisper would lead to an NIS investigation. And the NIS says, "Look, you have a choice. We can move forward with this investigation and we are going to find evidence that you are a homosexual. And you'll be prosecuted under military law. And under Section 128, I think it was, the uniform code of military justice... You'll... You may even spend time in prison. Or you can admit you're homosexual and you will be discharged honorably. Your service will be characterized based on your service. So you'll get an honorable discharge rather than an, other than an un-honorable or dishonorable discharge. And you'll get your benefits." And I definitely couldn't pretend I wasn't a faggot.

Maclom (05:28):

Uh, so, I signed the paper admitting I was a homosexual and they discharged me. But then they held me for some time because if you test positive while in the military, you have to... You had to... Then they made you go through this two week program where they drew your blood several times a day and used you as a guinea pig, I guess. And then, uh, and taught you how to live with AIDS.

Weston (06:04):

Next up is my diagnosis story. I have been positive for five years now. And I received my diagnosis while I was living in China. Uh, and so, because I was living abroad at the time, there's some unique sort of challenges that I faced as a foreigner in another country who was trying to get access to HIV care.

Weston (06:28):

And it's a little more than just, than just a story of how I was diagnosed with HIV. Uh, it's also a story about how my HIV diagnosis impacted me early on. Um. And it is... it is a story about... about stigma and the power that I think stigma has. And the power it can hold over people. And the power that stigma can hold over me, as a person with HIV.

Weston (06:56):

Just a little note about this story. I recorded it on my side patio, um, which I live in a very, sort of busy, part of Portland, Oregon. And so, uh, you can hear cars rushing by on a nearby highway. And you can maybe hear a motorcycle revving its engines. And there was a truck idling on the street behind me for a little while, so you got that, like, "Chugga chugga, chugga chugga, chugga chugga, chugga" sound. Uh. And there were sirens and airplanes going overhead. And, uh, there's just a lot of atmospheric noise. And, uh, that's what life sounds like. Um. So. Anyway. Here we go!

Weston (07:57):

It was August 2015. A month earlier, I signed a year long lease on a one bedroom apartment in the bustling Gulou District of Nanjing. The apartment was walking distance from a modern Western-style shopping center, and a traditional Chinese wet market that was literally underground. In the wet market, vendors sold a dizzying variety of mushrooms and peppers, freshly butchered chickens, and live fish swimming in kiddie pools, buckets, tubs, and tanks.

Weston (08:30):

In early summer, the markets filled with plump golden mangoes. Later on, pick-up trucks piled high with pineapple parked in the leafy city blocks. Around the time that the pineapples dried up, the city flooded with lychee.

Weston (08:45):

In the fall, I looked forward to stacks of red and pink pomegranates. These I ate slowly. One seed at a time. Pomegranates invoked stillness and calm. Eating one slowed down a city that otherwise spun wildly, brimming with people, filled with the music of traffic and commerce.

Weston (09:10):

My place was tucked away in a back alley that slipped in a gap between buildings off a major thoroughfare. The main road was lined with glittering glass towers, bejeweled with neon signs and flashing lights. These buildings were a façade. They obscured a network of older buildings that stood just behind them: Nanjing's hidden inner city. This is where I lived, on the fourth story of a squat Mao era apartment complex.

Weston (09:43):

When I was diagnosed with HIV, I was exactly where I wanted to be in the world. I was where four years of intensive Chinese language study and thousands of dollars had led me. I had friends, a new job, a new boyfriend, Zachary, a new apartment, and a freshly minted and hard won work visa.

Weston (10:05):

Despite the lack of free and open STI testing in China, I found ways to keep tabs on my health. I tested myself regularly using rapid results kits I purchased online. Once I even had an HIV test done in secret at a Western clinic in Nanjing. The German doctor did the test under the table, kept no record of it, and charged me for a different service of approximately the same cost to hide his tracks.

Weston (10:38):

Why all the secrecy? Well, that's a complicated story. In the 1990s, Chinese hospitals had a shortage of blood and platelets for transfusions. To meet demand, for-profit companies as well as state health departments started blood drive campaigns in rural communities. A market developed: sell your blood, earn a little extra cash. This blood drive campaign turned into a debacle when hundreds of thousands of people were sickened with HIV. First-person accounts tell of whole villages, entire families being wiped out.

Weston (11:19):

It turned out that blood was extracted and separated using unhygienic equipment, and that donations were not adequately screened for bloodborne disease. The Chinese government never publicly acknowledged the role their policies and actions played in the 90s HIV epidemic that ravaged Chinese farmlands. Instead, the government suppressed information about the number of HIV cases and spun a story about lecherous foreigners, foul with disease, who entered the country from outside and spread STI's in brothels. The idea of the HIV-positive foreigner was so prevalent, that gay men I met in China often told me they assumed most foreigners had HIV.

Weston (12:07):

To this day, China will not grant student or work visas to HIV-positive individuals and has a policy of immediately deporting foreigners who test positive within the country. Luckily I did not test positive at my immigration exam and I wasn't deported. Like I said, I got my work visa but it was a close call.

Weston (12:30):

My positive test came just a week after my visa was issued. I had just been home for the first time in a year. While in the States, I had a routine physical that returned a low white blood cell count. I dismissed the result as an aberration. I knew HIV was one possible explanation for a low T cell count, but I wasn't worried about it. I had just gotten tested. I had been getting tested regularly. All with the same result: Negative. Negative. Negative.

Weston (13:06):

A week after my blood tests revealed a low T cell count, back in Nanjing, sitting on my bed, Zachary at my side, I called my doctor. It would have been mid-morning in the Midwest. I told his assistant who I was, and they scrambled to find the doctor, who summarily told me that I had HIV and needed to seek treatment immediately. What happened next seems silly in retrospect, an overreaction. Talking about this five years after the fact, knowing what I know now about how easy it is to manage HIV, I'm having a hard time connecting with that person in Nanjing...

Weston (13:55):

In that moment, one of my worst nightmares was realized. I was plunged into fear and burning hot shame. I somehow managed to tell Zachary I had HIV before curling into a ball and sobbing. My body disgusted me. I didn't want Zachary to touch me. It didn't feel like my body belonged to me anymore. I eventually let Zachary hold me. We both knew he must have it, too.

Weston (14:35):

I was wrong about my body. It is still very much mine and very much loved. But my one bedroom apartment wasn't mine anymore. Neither was my new mattress. Or my washing machine. Or my job. I couldn't get treated in China. Zachary couldn't get tested without risking deportation. Our lives in China were over. We had to flee the country.

Weston (15:05):

I quit my job. I broke my lease. I said goodbye to all my friends. I packed up everything I could fit into a backpack and a single suitcase. And I got on a plane and I left. I may never be able to go back.

Weston (15:23):

Ten days after the phone call in my bedroom, Zachary and I were boarding a plane to Portland. We entered treatment almost immediately. We were adjusting to our anti-viral medication before we even fully adjusted to the time difference. It's a funny thing to have your life depend on a tiny green-ish pill. Odd that so much hinges on an 800mg tablet no larger than my fingernail. With it, I am completely healthy. Without it, I am dead in 18 months.

Weston (16:00):

Stranger still that where I work and make my residence, whether I live or die, should be subject to political whim. I fled China because of an accident of history and political narrative that made HIV-positive foreigners a target. Today, in my home in South Portland, Oregon, I wonder if one day I'll have to flee the United States for the same reason.

Weston (16:27):

About a year and a half ago, I came out as Pos on my Instagram account. In the months that followed, I posted videos of myself taking my HIV medication and shared stories about living with HIV. Ever since then, almost every single day, someone reaches out to me to talk about HIV. There are so many people out there filled with fear. So many who feel alone. So many who don't understand that HIV is a fully manageable disease... Not a death sentence.

Weston (17:02):

I've had people tell me that they are afraid to start treatment because they feel ashamed. They think they are going to die. They think HIV meds will make them weak and nauseated. They want to hide. They don't want anyone to know their dark and terrible secret. Getting tested, going to the doctor for a prescription, picking up medication at the pharmacy... It means being seen. The doctor knows. The pharmacist knows. The receptionist knows. Who else might find out? Who will you run into leaving the pharmacy? Who will ask the squirming question? Who will see the shadow of shame pass over your face?

Weston (18:27):

HIV doesn't scare me anymore. It's not something worth being afraid of. One pill a day and that's all it takes. Five years after my diagnosis and I'm the healthiest that I have ever been. Stigma scares me. HIV will never kill me, but the stigma could. Stigma can make it easy for others to look away as a congressional appropriations process siphons funds away from HIV treatment and prevention. Stigma can make me a target. Stigma can dictate where I live and work. Stigma can make it politically expedient for me to die.

Weston (19:13):

Stigma and fear, which are really the same thing, are powerful. Fears are connected to strongly held beliefs. Spiders bite. Dangers lurk in the dark. Germs are everywhere and can make you sick. The problem with phobias is that they are often embedded in a grain of truth. And that tiny grain of truth can have more weight than a dump truck full of facts.

Weston (19:46):

What scares me most in this post-truth world is that all the advances we've made in understanding the HIV virus, how to detect it, how to fight it, how to prevent it, and how to cure it, will be outweighed by fear.

Weston (20:05):

By the way, we're going to do a segment moving forward where we answer questions from y'all. So, please send us questions. You can... You can contact us over email or you can reach out to us on social media. You can reach out to our Instagram account, or our Twitter account... Just reach out to us with your questions and we'll answer them on the next Sunday Brunch.

Weston (20:41):

All right. Um, well that is Sunday Brunch. I... I know that this was, um, a bit more serious than our last episode of Sunday Brunch. Um. But I hope that you enjoyed it. I really love sharing these stories and I think that sometimes it's important to share difficult stories. And, uh, just thank you so much for listening. And we'll be in touch real soon.

Weston (21:07):

Thanks everybody. Have a good Sunday.

Credits

Executive Producer: Weston Anderson

Writer: Weston Anderson

Audio Engineer and Editor: Seth Goshorn

Hosts: Weston Anderson

Storytellers: Weston Anderson & Malcom Gregory Scott

Music: Whispering through - Asura 

Night owl - broke for free

Air Hockey Saloon - Chris Zabriskie