To social media or not?

Online spaces can be lifelines for disabled folks, too.

Credit: Rodion Kutsaiev on Unsplash

Welcome to Solicited Advice, our weekly column that celebrates the helpfulness in health. Because in a world where strangers at the grocery store love to tell you that a specific brand of magnesium will indeed “cure” what ails you (it probably won’t, so sorry), we’re all about passing on our lived experience in a way that makes your life a little better. Are we experts? Nah, not really. But we’re great listeners who have perfected the art of pillow screaming. Let’s get into it!

Social media is one of the most popular topics of conversation these days, and the discussions are often centered around how toxic the platforms are — and I don’t disagree from an ethical perspective. But as a disabled person, digital spaces are how I engage with the world. How do you all navigate this?

Ash: It’s the understatement of the year to say social media has made a huge impact on my life because nearly everything I do and everything that surrounds me exists because of social media. I think my fellow BFFs have summed up many of my own thoughts well (so keep reading!).

There have been times where social media has felt negative and toxic, and times where it’s been lifesaving, full of connection, and hilarious. I have found my community through social media, but I created a social space in Discord to bring that community to instead. I use it to find connections and build my photography business, but fighting algorithms and burnout make it feel insurmountable to keep up with. I have felt extremely validated, and filled with extreme despair over what I’ve scrolled upon.

In other words, my relationship with social media is incredibly complex which is why I don’t think there’s a clear answer on how to or how to not engage. I think you can find a great relationship with social media, but by design these spaces are intended to capture our attention and draw us in. Find the spaces that fill you and the accounts that inspire you. Andbutalso, use the block button extensively, set limits on your time, or cut a platform off all together if you have to. Only you get to define what feels good to you in these environments and that answer is going to be unique to your relationship with it.

Jess: I’ve met some of my best friends, chosen family, and my partner online. I’ve built careers from social media, and used it as an extension of my offline organizing. I’ve learned some of the most fascinating (and awful) things on social media. And I’m currently off almost all of it — I don’t post on any personal social media right now, except for some Substack Notes here and there, and I mostly scroll Bluesky and TikTok when I’m winding down at night.

After working in news and being an early social media adopter, blogging, and both online and offline activism, I had what is now referred to as a “midsize influencer” platform by 2016. I was also moderating several large groups. By 2018, I was feeling the pressure of parasocial relationships between the Trump 1.0 of it all and some really big shit going down in my personal life. I remember saying to a friend, “I need a break, I just want to be a regular person” and I didn’t know how to do that with what I had accidentally built — I was one of those people who actually responded to and moderated comments — could I just disappear for a few days? A week? A month? I’m realizing I have so much more to say about this particular situation! But that’s for another day. 

At the end of 2020, I left social media because I wanted to scream at people. I knew that wasn’t how I wanted to show up, I knew shaming people wasn’t going to move the needle, and I needed to take a break. While I would have handled the break differently in hindsight, I thought it would just be a week, so I never actually said anything. I just… disappeared and never really went back. I spent the next two years in trauma therapy, and during that time, took a job working in social media again. Fun fact: BFFs Ash and Kat were part of my hiring panel! I still enjoyed social media, and the thought crossed my mind that maybe being behind the scenes again would help me remember what I loved about my accounts too. 

What actually happened is that I ended up closing several accounts altogether. And then I stopped using Twitter when Elon bought it — the writing was on the wall but people thought I was being dramatic — and deleted all of my accounts there after the election. Until the election, I was also checking Facebook on my computer once a month or so, and using Instagram and Threads on my phone to send memes back and forth with a few folks and post stories to my “close friends.” During the inauguration, I deleted my Threads account and took Instagram off my phone. WhatsApp got the boot too.

For me, there are three distinct considerations: The platforms themselves, the ways other people use the platforms, and the way I engage with the platforms and people on them. Any and all combinations of those three aspects can be toxic. So my first consideration is, which platforms allow me to show up and engage how I want to? This is a combination of platform ethics, the interface and design, and the people I’m connected to. The second consideration is, do I enjoy being on this platform? Right now, for most of them, the answer for me is no. The third consideration is, why am I considering this platform? And the answer to that is a mix of reasons. I enjoy talking to people. I enjoy meeting new people. I enjoy learning about other people and their thoughts and shares. I enjoy sharing memes. I’m a yapper and I like to share what I’m thinking. None of that requires social media. Several of the groups that started on places like Facebook have now moved to Discord and Slack and Signal, and I’m so grateful for it. It’s social, but not social media, and without the ads, bad design, and constant shilling of products. 

All of that said, there are plenty of people who still use social media, and many of them use it well and don’t contribute to toxicity. So at the end of the day, I’d ask: Is what you’re doing working for you? And if it is, that’s what matters. We don’t have to convince people to leave social media for us to leave it, and we don’t have to convince people to stay for us to stay. We get to choose.

Kat: I have been thinking about this topic a lot lately, especially after Jess wrote about the nuances of boycotts, because those exact feelings can be applied to my relationship with and my perspective on social media. Now more than ever, people are leaving platforms (Substack included) in droves and the reasons are varied — from preserving one’s mental health to shoddy and dangerous content moderation. And for a lot of folks, I applaud those personal choices: You all do you! 

But, like you stated in your question to us, it’s a little different when you’re disabled. Aside from my small inner circle that I see regularly in person, my most regular social interactions are virtual. Whether that’s catching up with a friend on Zoom or DMing back and forth on Instagram, still being able to connect and foster some level of relationship is not a “nice to have” for me, it’s critical to my well-being. These days especially, I really only leave my house for appointments and errands. It’s isolating on so many levels, and I go through periods where I feel so alone that getting up in the morning feels like a luxury only afforded to the rich. But social media gives me pictures of the ocean, silly animal antics, and new snack ideas (go ahead Tik Tok, please show me one more way I can make an on-the-go salad with just a cucumber and a million mix-ins). 

So here are some of the questions I ask myself periodically, because I do think it’s important to keep a pulse on how social media is making you feel in the moment. Hope they help a smidge!

1. Which platforms do you spend the most time on?
2. How much time per day do you think you scroll for?
3. Describe how a specific platform (or social media in general) makes you feel in three words. Are there any platforms that surface primarily negative emotions? Consider limiting your time or deleting the app altogether.
4. What type of content brings you joy, comfort, or curiosity? How can you curate your feed to reflect that?
5. What type of content actively stresses you out or makes you more anxious and/or angry? How can you curate your feed to curb that?

Oh, and one more thing: I would really love it if, in general, we could all ease up on judging people’s decisions to use or not use social media. To be crystal clear, I do not excuse the cruelty and toxicity that digital communities can bring (I helped run and grow one for years, so I take that ish super seriously!). And very few platforms these days are run by individuals or corporations with a moral compass so… I get the critiques. I dish them out myself. I’m honestly so grateful I grew up in a world — and developed my personhood — where social media was only a mere seed of an idea. But it’s not all bad for every single person. In 2022, social media is one of the reasons I survived a week in the hospital during the holiday season. For someone else, it might be the only way someone can generate income, promote their business, or share a personal loss with their wider circle. It might be a coping mechanism that someone uses so they don’t self-harm or attempt suicide. Not all habits are vices, and not all people cope or navigate the world the same. Steps down from my makeshift podium.

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