If I want more IRL, I must go AFK
On my (retired) disability blog, back in 2010, I wrote a post called The tangible world wherein I ruminated on how I felt less and less able to interact physically with the world around me. I noted that many of the physical interactions I was missing out on were subtle, almost ephemeral, things that able-bodied people take for granted. I knew that much of my life was being spent at, and lived through, a screen. I could sense that the collective mass of essence that constitutes me—my soul, my consciousness—was becoming less able to manifest itself in the real world. I could feel myself receding into what I called, the world of the mind.
While I would never trade my mind for physical ability, I realize that there is a part of the world in which my participation is waning. Even with its capacity for thought, ideas, and emotion, the world of the mind can still be a cold, dark, and lonely place.
As I no doubt expected back when I wrote that, the trend continued. I spend most of my waking hours looking at a screen, manipulating a personal computer.
Why? Because using a computer gives me agency and powers that I don’t have otherwise. I have spinal muscular atrophy (SMA). It’s a neuromuscular condition that causes the muscles to get weaker over time. I use a power wheelchair and need assistance with just about every type of physical activity. In fact, I’m unable to use a computer in the conventional way. I essentially do everything via the mouse, as described in this little thought experiment.
Not only did the trend continue but using a computer became more and more my main activity, even as using it became more and more difficult. In fact, in the time since I wrote that post, I’ve lost many abilities. For instance I used to be able to tap on my phone, and I used it quite often as a mini keyboard for my computer.
To give you an idea of my level of ability, imagine Stephen Hawking if he was a bit stronger, chubbier, able to speak normally (mostly), and was about 95% dumber—that’s me in a nutshell.
I compensate for these losses in ability largely via technology, and aside from critical equipment like my wheelchair and my patient lift, the most important of that technology is my computer. And like most people who use computers for many hours much of that time is spent on the web.
I don’t remember when I first heard the term extremely online but I took the term at face value and applied it to myself. I use the computer a lot and much of that time is using the web so, as the reasoning went, I must be an extremely online person.
That’s not what that term means at all, as it turns out. Being extremely online mostly has to do with being engaged in internet culture. It’s something similar to being part of fandoms. It’s being totally jacked into to the latest memes, controversies, and dramas playing out on the web. It’s knowing a ton, and caring deeply, about the most obscure people, places, and things imaginable.
So, not me. I’m on Discord, and I watch a fair amount of YouTube. But outside of the big stories in the tech world (and maybe a little about current events), I don’t know what’s going on. I am not a pop culture person and never really have been. But I still feel like someone who lives on the internet. I feel like I have this in common with people who are extremely online.
I struggle to understand what this means for me. I shy away from looking at stats like screen time because I think it’s an unfair judgment against myself. At the same time, I have to call out my own bullshit because I know I could do some things away from the screen—drive around outside, talk to people, go to a coffee shop. These are all things I could do. The thing is, I like using computers and I like using the web a lot. I have cognitive dissonance because I can’t distinguish between how much my screen usage is based on me liking it and choosing it versus it being a necessity because of my disability. Maybe two things can be true at the same time.
A few summers back I lost power for four days. During that time, I mostly couldn’t use a computer, couldn’t participate in most of my hobbies, and suffered at the hands of a mercilessly hot Mississippi summer. It was then that I realized that almost everything I worked on or contributed to—my life’s work as it were—was completely inaccessible without power and internet. It feels as if all the evidence of my existence is just data on a server somewhere.
I feel like I’m missing out on the real world. Computers are fun. The web is fun. I hang out on Discord with people who have similar interests. I play D&D with groups of people online. I read blogs. I have Mastodon. I subscribe to RSS. I’m a nerd and I love all these things. But a human being isn’t meant to live this way.
As my muscles atrophy, I slowly lose what physical interaction I did have. I literally made a list of these things. And it’s not just interacting with things that I miss, but also people. It’s incredibly small things like the ability to talk with your hands or pat someone on the shoulder; leaning in to talk to people in loud environments; shaking someone’s hand. Paradoxically, the wheelchair simultaneously makes you noticeable and invisible. The worst of both worlds.
I knew someone who described herself as touch-starved. Her wheelchair created a figurative and literal barrier around her that limited her contact with others. But sometimes small gestures are powerful. And the inability to use them can be utterly excruciating at times. Have you ever watched someone close to you cry and been unable to give them a hug? It’s heart wrenching.
But as much as I hate my reliance on computers and the web, a part of me is enamored by the technology and its impact on my life. The internet is good actually. I mean, look at what you’re doing right now. You probably don’t know me, but you’re reading my writing. You’re becoming an ever-so-slightly more developed human being because you’re (presumably) empathizing with a point of view that’s different from your own.
Or maybe you totally relate because you actually have the same problem. Either way this technology enabled that. I was able to use a computer to take my thoughts, record them, and eventually turn them into HTML, where I published them to the web and you managed to find them. And just think, other people are out there doing the same thing. Despite feeling that I already spend too much time using a computer, I can’t help but think that I’m missing out on interesting things to do and see online.
It really is great. But it’s still not a replacement for the real world.
What can I do about it? That’s a good question. I’m still trying to figure it out. Part of it is not letting myself get too stuck in my routine. Last fall, when a friend of mine mentioned in passing that we could travel to Dallas to go to a concert, I rejected the idea out-of-hand, as I normally do, because of the difficulty of traveling with as many medical needs as I have. But then I remembered one of my caregivers had mentioned wanting to go on a road trip and I thought, well maybe I could go.
And I did. It was fun. I got around most of the problems I thought I would have. It wasn’t easy, but it was doable. I’m trying to take this spontaneous approach more often. I still have to juggle it with the practical realities of my disability, but its a start.
I’ve found other ways to slowly introduce Real Life™ back into my everyday. I’ve purchased some of my favorite music on vinyl. I may display it on the wall or, who knows, maybe I will do something wild like listen to one! Sometimes I like to design things. Maybe I will have them printed. I have a tradition of sending a personal letter by post to a friend each year at Christmas. Maybe I should expand my list. There is a coffee shop near my house. Maybe I can load up my laptop and work an afternoon there. Or maybe some other opportunity will present itself. I don’t know, but I’m trying to be on the lookout for those as they come.
Look out, world. Blake is coming back.