Online Activism: A Year in Review

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During the iteration of Black Lives Matter last summer, many people first stepped into activism. Personally, we were in the middle of a pandemic and I live with someone who is very immunocompromised so I couldn’t go to protest, which is what I usually do. And I felt very helpless. So I had to find a way to feel like I was actually having some kind of influence.

The people around me who I interact with the most on social media – they are as rooted in the world of activism as I am. There weren’t necessarily private conversations where people had those eye-opening moments or reckoning where they said, “Oh my god, something has to be done. I don’t know what to do. ”The people I associate with – they know what to do.

“I had to find a way to feel like I was actually having some kind of influence.”

Carlisa Johnson

This document, in my opinion, was something my friends should share with their family members and their friends. That especially appeals to me as a black person. Most blacks didn’t have to have these conversations because they already know. And a lot of my community is black.

I have a lot of academics as friends. I created and published my post and call to action on my personal Facebook and then shared it with my friends. So it snowed. It went from campus to campus. I have no idea how that happened, but it started to go out to celebrities too. So the cast of [the TV series] Riverdale started sharing it. I noticed a lot of teenagers asking if it was okay to share it, which is a demograph that I don’t have access to.

It’s kind of a cliché now, but this activism that works to correct inequalities – you have to act as a choir. When one voice goes out, there are others who still support. And even though my document was live during that particular period of time when so much was happening, it went so quickly and I just couldn’t hold out towards the end. But there are so many other documents that created this network that continues to flourish to this day.


Fiona Löwenstein, 27

PHOTO WITH KINDNESS

new York
Lowenstein is the founder and editor-in-chief of Body Politic, a New York-based media organization and wellness collective that hosts a slack support group for people with Covid-19, including those with long-term symptoms. It now has more than 10,000 members and gets around 50 to 100 new members every week.

The group was the meeting point for the Patient-Led Research Collaborative, a global collective of Covid-19 patients who are recording and sharing data on their own symptoms and have started publishing research on long-term Covid.

I got sick very early when the pandemic hit the United States. My first symptoms were on March 13, 2020. I was sick before there was a comprehensive list of symptoms from the CDC, before there was any information about long-term recovery or serious illness in young people. In the first few weeks that I was sick and in the hospital, I simply lacked a lot of information.

The support group started out as an emotional support group. People with covid and people with long covid really needed a place to talk to each other. But then it quickly became an info-sharing group because we lacked information from our doctors and health authorities. We just talked to each other and tried to figure it out for ourselves. Back then, the group was actually on Instagram as a DM chat. There were maybe 25 to 30 people in there.

Many people with myalgic encephalomyelitis or chronic fatigue syndrome reached out to us early on in the pandemic. For the most part, they are people who experience long-term symptoms following viral infections. They turned in for guidance on how to deal with such a disease, but also on health, advocacy and dealing with health authorities.

Activism Covid-19

GRACE HEEJUNG KIM

I think that has really shaped our progress and ensured that we always contextualize long Covid diseases with these broader long-term and chronic diseases. This is not entirely new. There is actually a whole story of this stuff.

Our support group is really only for Covid patients, but we have a dedicated advocacy channel where we have some users from other chronic disease and disability and health justice organizations talking about some of these more intersectional issues.

For those suffering from or recovering from Covid-19, we have channels for almost every system in the body: reproductive, neurological, muscular, circulatory, gastrointestinal systems. There we will discuss very specific symptoms. We also have channels for specific communities. We have three private channels that you can join upon request: a BIPOC channel, an LGBTQ channel, and a healthcare professional channel.

And then there are channels that are a bit more focused on people’s specific psychological needs. We have a victory channel. There you post everything from “I showered for the first time in a week” to “I’m reunited with my family in six months”. We also have a channel called Need to Vent, which is just the opposite – that’s where you go if you just really need to pour out your courage about how you are feeling and how things are going.


Tiktok Rynstarr

Courtesy image

Erynn Chambers, 28

North Carolina
Chambers saw some bad stats on black neighborhood crime used to support and spread racist narratives on TikTok – and after starting a following on the app, he decided to debunk them in songs:

Black neighborhoods are over-controlled, so of course they have higher crime rates.

And white offenders are underinvestigated, so of course they have lower crime rates.

And all of those stupid stats you keep using over and over again are based on a small sample size.

So shut the fuck up! Shut up, shut up, shut up, shut up, shut up, shut up! “

The song exploded on the internet and spread well beyond TikTok last summer, eventually receiving more than 2 million views. Chambers—
@Rynnstar on TikTok – is still active and popular in the app with 720,000 followers.

It wasn’t a big inspiration or anything like that. I only stood on my porch one day last summer singing a random tune that came to mind and hit Post. The next day it really started and I was stunned. And then another creator, Alex Engelberg, made a remix, a choir remix out of it – basically a barbershop quartet. That really took off.

Maybe it was just the right place at the right time, you know? People found it snappy, especially the barbershop remix. Very few people plan on going viral, but everything I’ve done that went viral was completely unexpected.



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