Let’s get uncomfortably real for a moment. You know how there are behaviors we like to frown on others for, but we’re not above engaging in ourselves? For example, there’s gossip (just sharing relevant information!). There’s a rebound relationship (well, you can’t slow down love, right?). Then there’s eating the last two slices of pecan pie (the nuts were going stale!).
Come, Flounce with Me
One such that I always used to roll my eyes at – gently, gently, to keep the prosthetics from falling out – was the social media “flounce” post, in which some offended person announces their imminent departure from a virtual community. They may share a paragraph or seven explaining how the group has fallen short of their oh-so-reasonable standards.
The typical group response is a derisive pile-on of “bless your heart,” “lock the door after you,” and “by-eee,” among other such well-honed internet dismissals. But, as I say, an opportunity recently presented itself, and so help me if I didn’t feel like pulling a heels-clicking, skirt-swishing, bosom-heaving, hair-flipping flounce myself. It would go something like this:
Oy, Meta, Facebook, or whatever you call yourself these days – it’s your boy, George, AKA #TropicalSheik! I’m a socially anxious, deafblind wordsmith who found incredible, intoxicating power and influence in this space. And I am leaving! Yes, leaving. It turns out I prefer my connections offline. I prefer my humans in-person and my impact nonviral. It turns out that some words, like “friend,” grow stronger through the intentionality of use, not frequency. Don’t wait up; I won’t be back this time.
Fortunately or unfortunately, I’ve already scheduled my account for deletion and logged out. I am conveniently “forgetting” the password. I’d say this was a matter of principle. I’d live my values rather than perform them – but I won’t lie to either of us.
It’s a matter of fear, sheer, unadulterated terror. If I log in again, I’m afraid there’ll be that one inspiring post in a fitness or food group. There will be that one ad for an under-the-radar local event. Ah, of course, there’d be that one Friend request from a not-so-secret crush – and I’ll succumb, again, to the sweet siren song of easy community and effortless connections. Been there, done that.
My flounce
So, this article is my flounce. It’s a celebration of social media’s promise to folks with disabilities. It praises access, influence, knowledge, and community nearly unconstrained by geography or other physical barriers. Additionally, it’s a candid assessment of its perils. The dangers include constant comparison and greener-grass hunting, dependency on external validation, vicarious living, and diminished presence/focus in offline life. Those are just a few.
I do hope this article helps make your choice – or the choice you offer a student or child – more informed and nuanced.
Hello World, Hello Paradise!
This is not, in fact, the first time I’ve deleted my social media self, swearing never to return. That first Facebook account was a party animal compared to the shadow I erased just now: 800+ friends and 50+ groups.
It’s hard to imagine that I started with all the grace and finesse of Great-Aunt Pearline. I drafted posts and messages as though they were emails. I included a salutation, signature, and all.
In my defense, I learned better fast. I learned all the faster once Facebook and other sites started – grudgingly – making accessibility for assistive tech users more of a priority.
I learned, as first the mobile sites and then the iPhone apps rolled out, that this was somewhere my wordy, nerdy, quirky, deafblind self could thrive. There was a context in which an excellent memory for details, a quieter sense of humor, and precision in language were spendable social currency. Here, ultimately, was an arena in which I felt competent and confident approaching anyone and everyone. I could join any conversation and make any move. Is it any wonder that the two romances of my adult life began – and ended – on social media? In other words, “Hello, world; hello, paradise.”
Exaggeration?
I don’t think so. For starters, structural access in online life, laggardly as it has been sometimes, seems easier and more negotiable than offline. In offline, inconsistent sidewalks, lack of public transit, ride-share denials, anxiety-provoking crowds, and inaccessible buildings loom as problems. We can only wish these would yield to a cacophony of complaints and bug reports sent to developers.
Then there’s the incalculable benefit of peer-to-peer, contemporary connection. For so many of us with low-incidence disabilities like blindness and deafblindness, a lot of life is lived under the isolating weight of being “the only one.” We’re the only blind kid in our grade, our school, our district, the only deafblind person in our family, our neighborhood, our zip code. We’re the only ones in our house of worship, on our university campus, or in our career field. Likewise, we’re the only ones interested in doing what others insist we can’t possibly do because “you just need vision to do this!”
The sense of power and comfort that comes from learning that we aren’t – never were – “the only ones” is a nearly indescribable balm to weary spirits. Little wonder that some of us – looking at myself here – become addicted to it. Communities have coalesced around dog guide ownership and training, accessible fashion and culinary know-how, the experience of blind parenthood, assistive tech and specific medical conditions, dating and sexuality, student life and professional life, and just everyday life. There’s more knowledge-sharing, opportunity-swapping, mentorship, and collaborative community work happening across TikTok, Twitter, and YouTube followings, Clubhouse rooms, and Facebook groups, Instagram and LinkedIn feeds than at all the world’s brick-and-mortar training centers and rehab program sites combined.
But perhaps what many of us find most alluring about social media is the expanded sense of mutual intimacy – (literally, “into me see,”) – that we encounter across the various platforms. I know that it takes Herculean effort to move most offline interpersonal interactions beyond a reductive focus on my deafblindness and its accouterments if I can budge them at all. Online, though, I had a front-row seat to everything that people were willing to put out there, which is a lot – and they had the same access to me. Many of my high school classmates and I came to know more about each other from social media interactions than we ever puzzled during four years of sharing a physical space and academic routine. In subsequent conversations, it’s come up repeatedly how the sheer complexity of my online presence – brother, educator, chef, martial artist, traveler, musician, writer, disability rights agitator, flirt, student, political pundit, philosopher, provocateur – worked to disrupt the stock image of “that smart blind kid.”
“And the Green Grass Grows All Around, All Around”
(Yeah, that’s a Barney song reference in the heading.)
Merely articulating these three positives of social media is calling others to mind. It’s reactivating the seductive call of “log in, log in! It’ll be better this time; we’ll make it work for you and not against you; trust me!”
Oh, you shouldn’t have said that last bit. Trust you when you’re seemingly custom-built to find the stress points of the human psyche and press HARD? Yeah, no.
Those stress points?
There is an urge to measure what we have against what others have. There is an urge to compare our bodies, jobs, partners, children, etc., to theirs. We need to feel significant to the people and communities we value.
There’s a pull towards more optimal options. We want more friends, better relationships, higher-paying jobs, more convenient and interesting locations. None of these are unique to blind and deafblind people on social media. However, our community has its innate toxicities that overlap in disturbing ways. Take our conceptualizations of independence and success. It’s often infused with an unconscious, crabs-in-a-barrel competitiveness: “Are my travel skills as good as his?” “Am I thriving academically and socially like she is?” “Do I know as many important, influential people as they do?”
As if those weren’t enough
Then there’s what I like to call the geography of opportunity. Some places are easier to live in as a person with a disability than others. They are the usual suspects: the accessibility meccas and cultural beltway cities of the West Coast, Northwest, Southwest, Northeast, and Southeast, where all the major movements happen. Contrast these with those other places: the marginal ones where something as simple as walking the dog or posting a package is an energy-depleting ordeal. And just like that, the National Federation of the Blind’s motto, “Live the Life You Want,” morphs horribly into “Want the Life Others Are Living.” We find ourselves more alive to and invested in those others’ hyper-curated realities than our own.
The audio-based Clubhouse app that exploded onto the scene in the Year of Our Pandemic, 002, took all these elements and ratcheted them up to a fever pitch. We could see in real-time the impact of words and voices as people piled into the follower column (indeed, there was a de facto Rule of Cool not to let your “following” column exceed your “followers”). Influence could be marked by how many people wanted to be in “rooms” where we were and how many left those where we weren’t. We knew we had arrived in Significance Ville when big names started pinging us to join their conversations. Yet the satisfaction from these validations never had time to settle, always dislodged by the nagging insecurities: “Am I in ALL the important conversations? Why didn’t anyone in the room follow me today? Am I losing my touch? Is mine the kind of life in the kind of place with the kinds of characters that people want to hear stories about?” …
Choosing What Matters
One of the first things I learned during my prior deletion attempt was that I probably have an undiagnosed addiction.
The second thing was that the adage “out of sight, out of mind” needs updating. It’s now “offline, out of mind.” You would not believe the number of people you cease to exist for once your avatar darkens. This started out as soul crushing but clarified a lot for me about the decision to go “full real.” It’s a different, more enduring validation to know that the people who know anything about me these days have chosen to know through texts, emails, phone calls, or visits.
The fact that these people are few pales into irrelevance, besides the fact that they exist and persist.
And all the funny memes and scrumptious recipe posts in the world can’t outweigh the chance to decide what kind of life I want and what I’m willing to do to live it without reference to anyone else’s trajectory.
The greatest choice any human ever gets to exercise: the choice of what matters to us.