cw: police, mental illness, inpatient hospitalization
It’s 3 a.m. I’m waiting for my cup of Shin Ramyun in the microwave. Whispering into my headphones mic, I talk to two people I met a week ago through a MMORPG (massive multiplayer online) video game from my childhood, Maplestory.
Maybe the reason why the usual social anxiety disappears is because I’ve never met these people before. We get to know each other in Discord “voice chat”, which means we communicate through audio, not video. We bond over in-game quests and weddings in our tiny avatars. We take edibles which results in us losing a treasure hunt in a Christmas celebration with our virtual guild.
Even though I’ve never met any of them in real life, I realize I care for them as friends. There are things we already have in common — Asian Americans from NorCal or SoCal who learned to find community in Maplestory and raves. We send pictures of boba in #real-life-pix, and I watch the video journey of Mott’s newly adopted dog Rila. We create a role called “Assigned Furry” so that we can get instantly notified if Mott goes live in VC and streams his nightly walk with Rila.
Friendship is hard to maintain in virtual times, but on Discord, you can at least have a shot with communist sailor moon memes, crying cat emoji reactions, and roasting each other about your Spotify history.
Moments of virtual joy like these gave me space to heal in a time when I desperately needed to. In times when talking to close friends came with guilt and shame from a health crisis earlier that year, strangers on the Internet became my late-night companions and secret confidantes.
In We Do This ‘Til We Free Us, Mariame Kaba writes:
“Self care is really tricky for me because I don’t believe in the self in the way that people determine it here in this capitalist society that we live in. I don’t believe in self care: I believe in collective care, collectivizing our care, and thinking more about how we can help each other.
How do we collectivize care so that when we’re sick and we’re not feeling ourselves, we’ve got a crew of people who are not just our prayer warriors but our action warriors who are thinking through with us? Like, I’m just not going to be able to cook this week, and you have a whole bunch of folks there who are just putting a list together for you and bringing food every day that week, and you’re doing the same for your community too.”
In a virtual time, community care webs rely on tech in order for people to all participate, no matter where they are. Recently, I've been inspired by the question of “how can we co-opt technologies to build a more beautiful world?” (#001: Building Better Realities). Tech can open the door to a more beautiful and accessible future that challenges capitalism, ableism, and racism, especially when it’s created by us and for us (#BUFU).
I don’t believe in self care: I believe in collective care, collectivizing our care, and thinking more about how we can help each other.
Tech as a way of healing is still new and strange to me. I’ve always had a difficult relationship to tech — my time as a former software engineer meant that I became quickly disillusioned with corporate and “CS for social good” tech that focused on capitalistic individualized solutions instead of recognizing the systems that discarded my experiences as a disabled person.
The “hacking” mindset that I first found exciting would haunt me as I realized that I could never “hack” my way into feeling cared for in those environments. During my time in tech, I realized so many parts of me were unwelcome. I learned painfully while undergoing harassment that no corporation would care about my well-being or safety. I turned to community organizing and disability justice as a way of finding hope, healing, and care with communities that understood the harms that the version of tech I had known had glossed over.
I never realized the power of virtual community care until my loved ones did it for me. Because of COVID, inpatient hospitals did not allow personal visitors. In general, inpatients are required to give up our personal devices, and are not allowed access to technology at all. This meant two weeks for me of isolation from my loved ones, except for five minutes at a phone booth shared between 20 people if I was lucky enough to get a slot.
As someone who relies on technology to care for myself and keep in touch with my friends, especially the disabled neurodivergent ones that I can’t always be physically with, being forcefully prevented from using technology means withholding the forms of care that feel closest to me.
When I left the hospital, an act of community care that I will always remember is when one of my closest friends created a Google spreadsheet for my friends to sign up to call me. Recovering from an intense manic episode meant entering into an equally intense depressive episode. By recognizing that I didn’t have the capacity to reach out for support and instead reaching out to each other on my behalf, my friends made me realize that a crucial part of community care is creating a care network of who I can turn to when I need support and comfort.
The Detroit Community Technology Project believes that communication is a fundamental human right. They define community technology as “an alternative vision of technology in which communities and neighborhoods have direct control over their digital communications, allowing for greater self-determination and power over their shared digital voices” (Community Tech Handbook). Community technology might be digital justice coalitions, community radio stations, makerspaces, community mobile phone networks, and community storytelling platforms.
Tech and the internet have the ability to transform our communities, especially by giving our marginalized communities spaces to shape the future they envision. Seeing community initiatives flourish virtually during the pandemic has given me hope for us to take care of each other instead of depending on the broader institutional channels that fail us.
After one too many shrooms trips, my mania eventually entered into psychosis. By definition, psychosis is a state where “thought and emotions are so impaired that contact is lost with external reality.” During my psychosis, I remember feeling terrified that the police were coming after me. The paranoia consumed me to the point where I stopped sharing my location with friends and unplugged all my electronic devices. The mindset behind this was to not be sent to inpatient psychiatric treatment, where COVID spread at alarming rates similar to other carceral institutions like prisons.
Community care for me during my state of emergency wouldn’t have been possible without technology. The rare moments when I felt comforted in such a state of terror were when my friends FaceTimed me — from Chicago to Seattle to Fresno. Hearing my friends’ voices and seeing their faces were when I felt grounded in external reality, even if fleeting. I found out later that my friends had created a group chat to decide how to best support me — containing my best friend from high school, my college friends, and friends I had met during my gap years who shared my diagnosis.
I never thought I would be grateful for whitepages, the site that my high school friends used to find out our targets’ street addresses for Assassins, but it allowed one of my best friends to directly fly and show up at my front door. The feeling of hearing a knock, expecting the brutish voice of a police officer, and instead hearing the warmth of a close friend’s is indescribable.
Every time I see a police car, hear a siren, or see the never-ending news cycle on police brutality, I physically and psychologically tense up, reminded of the horrifying reality that cops are considered the first responders to my disabled friends and me when we’re going through a crisis. Due to traumatic encounters with police in my past, I experience paranoia and psychosis specifically around law enforcement during my manic episodes. There will never be enough words to describe how terrifying it is to feel that you can be attacked any moment in your only private space, especially in a time of crisis when all you need is care.
Through our existing institutions, the go-to way of checking in on someone is called a “wellness check”. What this actually means is that you call the police to the door of the loved one you’re worried about. These “wellness checks” that rely on violent state institutions from the police to carceral institutions disproportionately cause harm to disabled BIPOC folks.
This past summer while I was going through a crisis, I was heartbroken to realize that some of my friends kept wanting to call the police (and eventually did), because there was no other option that they knew of. It was hard for me to separate the pain of feeling betrayed by my loved ones in a time of protests that swept the nation against police brutality, and the failure of our current reliance on police and incarceration to provide “wellness” for disabled folks.
When thinking about abolition, radical reimagination of a future is what I dream about and want disabled perspectives to be a part of. I want a “wellness check” where we do not rely on harmful state violence. For me, tech allows me to think of speculative futures where checking in on your friends centers our need for community-centered care that prioritizes the agency and safety of those most vulnerable.
I want tech that heals instead of harms. As in — tech that brings joy and care to the people I love and care about in a world that fails us.
Even if it’s as simple as being able to brew tea or prepare food for your friend virtually, this is the tech I dream of that allows us to be compassionate for each other. I want something that my friends and I can use to express our love for one another and uplift each other in a world that constantly wants to weigh us down. What I dream of is the concept of a virtual grassroots infrastructure of developing care webs. Automation in this context would save energy of care providers so that we care for each other in a sustainable way.
I want tech that heals instead of harms. As in — tech that brings joy and care to the people I love and care about in a world that fails us. This makes me hopeful for a more beautiful and accessible future where we believe in collective liberation for disabled communities.
One of the lessons I didn’t expect to learn from tech was how it would bring technologists into the grassroots movement in innovative ways. Technologists are able to facilitate communication in ways that allow us to care more for each other.
When college went virtual for the first time in spring of 2020, this immediately exacerbated and exposed gaps in learning, from students who did not have stable wifi access or safe residential environments. As a disabled student registered with the Office of Accessible Education, I was grateful enough to have access to academic accommodations. However, academic accommodations are classist in that they often require a diagnosis to determine eligibility, a diagnosis difficult to obtain without financial ability in our current healthcare system. Additionally, academic accommodations failed to support disabled students in virtual environments by not addressing the barriers we faced in accessing the help we needed.
In CS102, an introduction to data programming for humanities and social sciences students, I watched students who had never written a line of code in their life experience enormous pressure as they were expected to learn SQL, Python, R, and even machine learning in 10 weeks with barely any support from the teaching team. I watched through Facetime as my friends wrote fifty-line programs without hitting the run button once and didn’t know how to debug because no one had ever shown them how to write print(“poop”).
Open sourcing software is a practice I’ve always admired. One of the only things I love about coding is how communal it is — copying “collaboration” is encouraged on sites such as Stack Overflow and GitHub because it saves everyone time and energy. It’s a form of practical application-based education for people of all levels to be exposed to creative projects of programming. What I also love is that it encourages people to collaborate, with the idea that anyone is encouraged to contribute no matter their background or experience.
Disability justice has taught me that organizing centers care. Racial and disability justice means understanding how our intersectional identities allow for powerful solidarity. As someone who couldn’t physically be at demonstrations, I wanted to advocate from my keyboard because digital organizing is important to disabled organizers. Over Facebook messenger group chats, our organizing coalition Who’s Teaching Us brainstormed ideas.
I was inspired by the OSS model to “open-source” an email template drafted to professors advocating for classwide academic accommodations for Black, FLI, disabled, QTPOC students. Using Google Docs and Google Sheets, we released the email template along with the emails of professors and administration. We also created a spreadsheet where students could input classes and their professors’ responses — and direct energy at professors who were ableist and racist. This was a spontaneous campaign, but I was amazed and touched by how many different communities reached out.
“One isn’t born an organizer, but becomes one.”
For many, it was their first time organizing, because they had never seen themselves as being part of a movement before. In order to reach over 220 professors and classes, this campaign relied on students from all different disciplines, from engineering to medicine to humanities, who collaborated under the idea of community accountability. This model empowered people, especially those with technical backgrounds, to see how they could contribute, whether it was managing the Google Doc to prevent people from hacking and trolling it, or organizing the spreadsheet for further clarity.
This campaign wouldn’t have been possible without technology, when students were all over the world and we could only communicate with each other online. We created Facebook messenger group chats so that we would update each other and add people who were interested in getting involved. We used Twitter threads to amplify the ableism perpetuated by certain professors in order to gain wider public support, which also resulted in alumni reaching out directly to share their own experiences being denied accommodations from the same professors going back decades. Through technology, we connected with communities that held us in solidarity — their powerful stories allowed us to connect to a broader movement in which we were not the first, that ableism has always been so prevalent and invisibilized by academic institutions. We used Google Drive as a platform to share this template with students from different schools, since movement building is largely dependent on knowledge sharing. The online infrastructure built for this campaign allowed for a lower barrier of entry for people who didn’t have as much organizing experience.
Movement tech, with its belief in strengthening grassroots organizing through technical training and tools, empowers all of us to care for each other in unique ways. Digital organizing gave me the personal hope I needed to ask for help when I didn’t have the capacity to do certain tasks, as organizing is just as much about taking care of each other.
We can build a more inclusive and accessible movement if we creatively use technology. I once was at a Chicago rally where it was 95 degrees. I watched people faint and show classic signs of a heat stroke. Although a shocking 10,000 people showed up, there were so many more who couldn’t be physically there. We need to recognize that instances of “offline” organizing have their limits. Virtually, we open pathways so that all people can participate. Even streaming over platforms like Facebook and Instagram Live allow people to feel present.
I want to be part of the virtual future where care work is more accessible for us and our loved ones. While it is so rewarding, providing community care can be exhausting. Realizing that I also need to receive care is a lesson that I will always treasure. Accessibility is central to the movement, and there are ways that tech allows us to be better at it.
If we rely on tech companies to save us, they will harm us. When we create the space for and trust communities to care for themselves, we dream up worlds that heal in ways no technocrat could have imagined.
with care, theresa
Author
Theresa Gao
I highly recommend *Twitter & Tear Gas* by Zeynep Tufekci, about digital strategies that shape how protest evolves today in the age of social media, and *The Collected Schizophrenias* by Esme Wang to understand the experience of psychosis shaped by race and culture.