The Price of Silence

From the ACT UP funeral march carrying the body of Mark L. Fisher from Judson Memorial Church up Sixth Avenue to the Republican National Committee headquarters on the eve of the presidential election, 1992.

Stephen Barker

Where were you in 1992? I know where I was, and it hurt, a lot.

In 1992 an estimated 33,590 Americans died from HIV infection. That's 1992, not a cumulative number. There were and still are a few key contributors to the continuing spread of HIV. I don't know how many times I've heard it, read it, said it; the statement: This didn't need to happen. But it did, and it still does. We just don't talk about it.

Three things:

1. In the gay community, no one wanted to address it. The underlying social and moral ramifications were just overwhelming enough for the most at risk demographic to hope it wasn't really happening. You cannot, you may not, judge these men for their silence. You weren't there. Most of you have no idea. You'll need to make a leap of faith and trust in their own internal chaos and pain. 
2. In the country at large, no one wanted to address it. We turned away in disgust. In the beginning, we knew very little about the virus. Our collective assumptions, and unwillingness to let go of those assumptions, permitted some of the most egregious crimes against humanity I've witnessed in this country. 
3. Our government refused to address it. In fact, it was given lip service with a smile and then openly disregarded.

Today, the CDC estimates that approximately 1.2 million people are living with HIV in the US and that 1 in 8 do not know they're infected. More than 650,000 Americans have died of HIV related infections. 

This did NOT need to happen. It does not need to be happening today. While we have not been willing to cough up the resources to cure this thing in... wait for it...

Forty Years

...we know enough today to keep ourselves relatively safe and yet, 1.2 million people are living with it right now... 12.5% of which are clueless. 

Are you scared? Shit. I'm scared. I've been scared for years.

In 1991 I gave blood and shortly thereafter opened a letter from the American Red Cross. I was standing at the foot of our very long driveway with my five year old and my infant, waiting for the school bus. I literally stopped breathing. When Mike's bus pulled away, I sat down in the driveway and cried.

It was a poorly constructed letter. I'm hopeful they've figured out how to communicate possibly deadly information in a more appropriate manner. In 1991, I read this (paraphrased):

Dear Ms Jefferies,

A sample of your blood was returned, having tested positive for one or more of the following:

• HIV
• Hepatitis C
• I stopped reading....

We strongly suggest you contact your primary physician immediately.

I called my doctor. He said, come right in. Then he said, as he was pulling sixteen gallons of blood out of my arm...

You know, I see this more and more every day. Most of these are false positives. They're being extremely careful. 

me, still sucking in air 

You do understand that it is highly unlikely that you have contracted any of these diseases?

yes

However, until we have your results, you must refrain from all sexual activity and leave as much of the childcare to your husband as possible.

OHMYFUCKINGGODAREYOUSERIOUS? 

OK. 

I didn't have anything. Not a damn thing wrong with me. I didn't give blood again until 2012. I'm A-, that matters a lot. I was scorched. 

However, what I experienced isn't even in the same camp as the human beings living with HIV and fighting to live. Do you notice you don't hear much about this anymore? If at all? 

Why is that, do you suppose? I can't help but wonder if we did talk about it, would it make a difference? If the shame and stigma came off the disease, would people who got sick be willing to talk about it? If we talked about it, if the six of your friends living with it (yeah, you don't know about that) talked about it, bringing it to the surface, would that 1.2 million number drop? 

I think you know the answer.

Before I continue, I want to acknowledge the work the LGBTQ+ community has done and continues to do. They are the reason that number isn't exponentially higher. Unless you have worked with them, you have no idea. It's secret because we tell them it must be secret. 

Why we're really here today

I'm not really here to talk about the spread of HIV and the stigma attached to it; I'm here to talk about COVID.

The United States is divided into two camps (with lots of divisions and platoons blah blah blah):

• Team Denial - This team believes several things, maybe not all, but enough. COVID is a hoax. COVID will not make me sick. God will protect me. Everybody has to die sometime. My civil liberties are at stake and I'm not going to stand for it. The one thing they seem to have in common is they are rip shit livid. About what? You'd have to ask them.
• Team Righteous - This team really ought to be called Team Shame because that is the undercurrent, the conversation, the root anger, and the unwillingness to actually do anything about it. I wear my mask. I isolate. That's why I'm ok and you're not. You're all assholes. Do you hear yourselves? Smells faintly of fascism in here... I'm certainly suffocating.

I asked the Facebook hive if they talked about their COVID tests, positive or negative. I already knew the answer, or thought I did, because I don't ever see it in my feed. I see a lot of shaming, but I don't see personal conversation about a virus that is killing us very quickly. Far more quickly than the AIDS virus. In another month or two, give our current rate of growth, the US COVID deaths will surpass the US HIV deaths.

Just sit with that for a minute. Please.

I have mixed feelings about the responses I got. I am grateful to have received as much feedback as I did. I cried and finally had to stop reading last night. I picked the rest of them up this morning. Right before I left for my second COVID swab. I cried again.

There were two answers, all of them coming down to the same thing:

1. I don't share that kind of information publicly
2. I don't share that kind of information on this forum (where the bad guys can suck it up and use it against me - you think they don't already know?)

Some people were very direct, some danced around they way they answered. One got a little touchy about why the hell I would suggest someone get tested, just because. I didn't interact with that. One acknowledged that in my speaking, I was doing exactly what I think should be done. But that's as far as it's going. You do, I'll watch, which beats, you do, I'll stone you, any day.

This is just a thought: In terms of the root of the hoax; these 'stupid' people don't see any sick people. No one is talking about it and it hasn't hit them. Yet. They see big numbers but they don't see sick people and they certainly don't hear about it. 

And you know what? I got so much love and support last night and today just because I said I was sick, and scared, and scheduled for a test today. What might happen if we knew who to take care of in our community? What might change?

It doesn't have to be this way.