“May you live in interesting times.”
That was the ambiguous fortune I pulled out of a cookie after a recent Chinese dinner. I didn’t think much of it at the time, but it clearly stuck with me on some subconscious level, because days later, it popped into my head as I was scrolling through one of the many SCI/D forums on Facebook.
After spending a good chunk of time reading incredibly compassionate responses to a newly-injured woman who was having suicidal thoughts, I clicked on a post a friend shared from another SCI forum. It started, “Tonight while in the shower I was brushing my teeth and decided to use the electric toothbrush on the head of my …”
Interesting times, indeed.
Of course, I am cherry picking — but if you’ve spent any time at all scouring the vast wilds of disability social media, you no doubt know that these “interesting” juxtapositions are more common than they are uncommon.
A lively discussion on the merits of suprapubic tubes is just as likely to be followed up by a vitriolic rant about a parking violation as it is by a thoughtful list of posters’ preferred UTI remedies.
A link to a thorough guide on how to maintain your benefits while transitioning back to work may have no comments or likes, while a silly meme repurposed for wheelchair users will get shared more often than your friend’s HBO password.
Someday, when scientists are confident they have created true artificial intelligence, their creation’s final test will be to discern the logic underlying which posts resonate and which fall flat. Good luck, robot overlords.
It may be tempting to sign off from this oft-confusing e-landscape. The noise can be overwhelming, frustrating, depressing — you name it — but I would argue that doing so would be a huge mistake.
Because in between the noise, in between the memes and the probably-better-not-shared pics of pressure sores, we are witnessing the creation of the world’s largest catalog of our community’s authentic stories. Every day, tens of thousands of people from across the disability spectrum pour out their hearts and minds, writing candidly and often emotionally about everything from advice, to ideas, to general support and much more — pretty much any topic you can think of.
The closest analogue I can think of for the SCI/D community is Rutgers CareCure Community forum. Thanks in part to its massive size, the social media community is imminently more accessible and easier to find than anything that existed before. Also adding to the appeal is the lack of commitment required. If you’d like to be involved, great, you can share as much as you want and connect as deeply as you desire. If you just want to ask a single question and bail, that’s fine too.
I remember not wanting anything to do with other wheelchair users in the wake of my injury. But I also had a lot of questions, and I’m pretty sure I would have been all over the opportunity to tap into such a vast wealth of knowledge that asks for such little personal commitment. At the least, it would have made 20 years of showers a little more … “interesting.”