For the record, I don’t really think accessibility is shit. I’m speaking (tongue in cheek) towards the reason why I do what I try to do. And what follows is the transcript of the words I gave to the 6th annual #a11yTO Camp this past Saturday. These words, the words I had my computer speak on my behalf, appear here verbatim. That’s why words such as “trach” and “Tracheotomy” are spelled phonetically, and why some bits of punctuation may seem oddly placed. The reason for this is to help VoiceOver get my points across, with the intended affect. We all, assistive technology included, need a hand getting our voices heard.
So when Billy asked me if I could condense my quote, “Why This Shit Matters,” unquote presentation into a five minute lightening talk for the opening of camp, I said “I sure can, I can do anything.” But what I left off from the ass end of that sentence was, “because I haven’t wrote it yet.” Potential joke on Billy. Or we’ll find out in roughly five minutes by my estimation.
As it’s been said, my name is Johnny Taylor, and in all honesty, I don’t spend much time talking about myself. There, I said it – or had it said. I’ll admit, if you’ve read my blog or follow my social media feeds, as of late especially, it doesn’t look like I’ve had much time for anything but talk about myself – in terms of how I relate to my chair. But in my reality, I typically run a pretty tight-lipped ship. Not for any real reason other than I think people have better stuff to concern themselves with, rather than hearing about a guy who essentially bonked his head in a car twenty years ago. It’s not all that interesting. Or at least I think it’s not anymore.
To me this has been my life for a long time, not much changes with it from day to day. Inside looking out, things are pretty routine, and have been for quite sometime. I forget my words and experiences may have value to audiences. And it’s audiences, such as the one gathered here today, where I could possibly strike a chord.
Back on the fifth of August, nineteen ninety-six I was involved in a car accident. And yes, the accident was far more serious than the bonk on the head I just referred to. I had my brain stem effectively crushed, in a manner of speaking. And I was left in a coma for roughly two months as a result. A largely medical induced coma (still counts).
But when I emerged from that coma, that’s when things got interesting. I was initially diagnosed with what is known as Locked-in syndrome. Locked-in syndrome is a condition where a person is fully aware of their predicament, but they’re unable to voluntarily move any muscles except for the eyes.
I had full control of all of my sensory and mental faculties, just no control of my muscles. I literally woke up one day, sometime before Halloween, in a hospital bed, only able to move my eyes and blink my eye lids. I could feel and think, I just couldn’t move.
For those who have heard my story about getting and using a computer, with switch access following my stabilization, fear not, this is a new tale. In fact, bringing this back to my opening point about my reluctance to talk about myself, prior to my writing these words out, I have never attempted to communicate this to anyone, ever. Not for the reason I stated previously, rather it was something that frankly scared the hell out of me. Best left unsaid. Lucky you, you’re the first people to hear it.
Soon after my admittance into the hospital I was fitted with a trake. Basically a trake is a tube that goes into a persons neck following a trake e otomy, strangely enough, to ease breathing for a patient. And it was this tube in my neck that required what is referred to as suctioning. Every couple of hours my trake needed to be cleared of its mucous build up. Plus I’d picked up a persistent little antibiotic resistant bug, which essentially left me in medical isolation the entire rest of the time I was in that hospital.
Jump to mid-December of ninety-six. In anticipation of Christmas I was transferred to another hospital in my small home town. This hospital was just down the street from my house. The intended purpose of my transfer was to make things a bit easier on my family during the holidays, as I awaited the infection to work it’s way out of my system and for a spot to open up at a third hospital so I could start my rehab – to further build on what tiny movements I’d regained.
Keep in mind, the hospital I was transferred to was more or less exactly the type of institution you would expect to service a small community. Not to put too fine a point on it, but it’s safe to assume the hospital hardly (if ever) treated patients who needed the level of care I required. Case in point, I was immediately transferred to a trauma centre in a nearby city from that very hospital following their assessment on the night of my accident.
Granted, it had a room where I could be kept in isolation but some of the little things I’d need – a call bell that could be mounted atop my pillow so I could nudge it with my head to alert staff if I needed help for instance – needed to be ordered in. And essentially being the holidays, it took some time to get there.
Yep, this is headed where I’m sure most of you suspect – and for those of you who don’t expect it, better on you. Sometime between my arrival at the new hospital and the arrival of that call bell, it happened. I awoke in the middle of the night under panicked distress caused by difficulty getting air.
Spoiler: I didn’t end up suffocating, and I’ll spare you from the thick, warm detail of my relief. You’re welcome!
For the record, I’m not too sure how much of a threat me suffocating from a blocked trake was. Honestly, I doubt I was. But it didn’t matter, I was convinced I would meet my end in what I now fully understand to be the absolute height of irony. With no way to call for help, largely Locked-in my head in an isolated hospital room, I was paralyzed (no joke) by the fear of my family finding me lifeless in that bed the next morning.
Yes, I’m fully aware if I had suffocated it wouldn’t have gone down quite like that. Benefits of hind-sight I suppose. But you can’t expect a mind that has been through all mine had been through by that point, to exhibit anything close to resembling clear thinking, in a moment such as that. That was truly the only thought in my head the entire time I was struggling to breathe.
I’ll wrap this up simply by rehashing words I’ve written before. Point being this story was exactly what I was referencing when I wrote them. Quote, “rather obviously, that’s precisely where everything I’ve done these nearly nineteen past years is rooted. And those roots run very deep. It’s why inclusive design matters to me. It’s not just some line drawn in the sand. Inaccessibility has very real consequences,” unquote.
Or more to the point, a persons accessibility to the technology we design and build, can literally be the difference between the idea of life, and its convincing death. That’s why, this shit matters.