Social media can be an amazing connective tool for people with HIV and AIDS. It's a way to find other survivors and create community, according to Caroline Sinders, online harassment researcher for the Wikimedia Foundation. Having fun, sharing information and making friends is always great, right?
But, says Sinders, "Someone who wants to disrupt or harm those communities can also find them easily." What starts as a post of a news article or a conversation between friends can, with the addition of an unintentionally mean comment or actual harassment or trolling, quickly turn into this:
It can be hard to navigate these experiences, especially in the real-time world of the internet where the pressure to respond perfectly is enhanced and arguments can easily throw you off your game. Read on for information on how and when to educate others online, when to disengage and how to take care of yourself around personal and emotional topics.
HIV Shaming Can Be Slut Shaming
I dream of a world like Amber Rose's "Walk of No Shame", where birds alight on your shoulders after you've done it, and your neighbors spontaneously burst into song about your amazing and empowering sex life. Unfortunately, that's not how it goes. And, for folks who believe sexually active people should be shamed, for whatever reason, any seeming "proof" of that "fact" is an opportunity to crow about it. It's an awful thing to be on the receiving end of this belief -- so much so that we'll refrain from providing examples here. Suffice to say, the life of any sexually active person is just that: Their. Life.
As a Matter of Fact, Your Life Is Your Strength
Your lived experience can be an empowering way to explain why stigmatizing or untrue language about HIV and AIDS is harmful. "I have learned to identify one thing I want to communicate, one message I want to get across," says Louis Ortiz-Fonseca of The Gran Varones, which uses video and photography to tell the stories of Latino and Afro-Latino gay, queer and trans men. "This supports me in navigating very public conversations that challenge HIV stigma." Identifying your one message can also help to contain an emotionally driven exchange by keeping you on track.
Facts for Your Back Pocket
Educating others online can be challenging because formats such as comment sections and Twitter encourage ongoing but short exchanges.
Quick facts about HIV from neutral sources (meaning: not you) is one way to help people gain more understanding -- but on their own time, not yours.
"I have been able to shut down a conversation with a little bit of education," says Tami Haught, the organizing and training coordinator for SERO, a network of people with HIV and allies fighting for freedom from stigma, discrimination and criminalization. "For me, that's a victory."
It's Okay to Clap Back
If you feel you can speak up, go for it. As writer George M. Johnson said in his recent article for The Body, "How I Took on Trolls Shaming My HIV Status and Short Shorts," "I am an activist and journalist and no amount of trolling will ever prevent me from talking about the issues that need to be addressed." And as Tami Haught emphasizes, "It is the responsibility of the community to make an educational comment and try to lift the conversation up so it's not hate-filled filth."
Know Whom You're Speaking To
"It can be a special kind of pain when someone you love and respect posts stigma-based messages on social media," says Ortiz. In such cases, you may need to engage for your own self-care, to preserve the relationship or simply to speak your piece.
It can be helpful to move these conversations to private messages, both to retain your own privacy and to make the situation less charged by having it not viewed by others.
Strangers who engage in harassment or trolling for their own enjoyment are not likely people who will be receptive to up-to-date information about HIV. They are probably there to get a rise out of whomever they can, however they can, because ... trolls.
"Trolls may claim they are "'joking' or 'being ironic,'" says Caroline Sinders, "but it doesn't lessen the severity of what you're saying if you wrap it up in the irony bow." Trolls are not there to have a conversation; they're there to make fun of you, put you down and make themselves feel clever while doing it.
If an online conversation is clearly exhibiting signs of trolling, it is completely fine to remove yourself from further abuse. "The advice I give to other poz folks is to remember that not everyone deserves your rage," says Ortiz. "This of course works especially well with folks whom I don't know."
You Decide When to Leave
"Knowing when to stop is very important," says Haught. "Knowing one's own triggers is crucial." Haught says she has learned that, for her, any comment that encourages or expresses violence is "not the comment I should be responding to."
Sinders adds that, as a culture, we've become inured to online violence, and can choose to exit a conversation before it becomes violent. "But that shouldn't be viewed as 'the' solution," she says. It can be hard to determine what what will become harassment or violent. Often the only recourse you have is choosing to walk away.
It's also acceptable to mute or block people when you feel threatened or upset or simply no longer want to interact with them. Every platform has measures that allow you to end contact whenever you need: Use them.
Hashtags Can Help
Hashtags are so prevalent online that we can sometimes forget their original purpose: to aggregate information. In our recent slideshow, "7 Ways to Correct the Top Alternative Facts About HIV", Shyronn Jones, strategic communication representative-Georgia Chapter, Positive Women's Network, related a story about educating someone about HIV on Twitter and "sealing" the conversation with a hashtag that would ensure other people found the conversation, as well as endcap her viewpoint that HIV education goes hand in hand with #BlackLivesMatter.
Choose Your Community
Sinders says that, unfortunately, there aren't as many tools as there should be at our disposal to create digital agency. One option that does exist now is sticking to private groups addressing HIV/AIDS topics. "They allow you to put rules (for conversation) at the top," she says.
She also suggests Slack, which is often used for business communications. "A Slack user has to invite you, via your email address, to a Slack channel (which is inherently private), and the space allows you to use multiple channels," she explains. In both cases, rules such as "no stigmatizing language" can be pinned at the top, and following those rules becomes part of the community agreement.
Jennifer Johnson Avril is a communications professional and HIV/AIDS activist based in New York City. She is a master's candidate in media studies for social change.