My Constant Irritation

Posted by Candace Cable in Life After Paralysis on August 24, 2016

This August will be 41 years since that dark and starry early morning I took a seat on the passenger side of a top-down jeep heading from my work to my home. As we traveled over the steep turning and twisting road of Kingsbury Grade a single car accident crushed my vertebra; about mid-spine, slicing my spinal column and sending paralysis down my legs with a spinal cord injury (SCI). I have used a wheelchair full-time for mobility ever since that morning. It was a morning to remember.

But I don’t remember the date of that morning. It was one of the last few days of August, but I don’t remember what day it was. I am unlike so many other people I know that have sustained SCI, they know what day it was and some people even know the time their SCI occurred, but not me. Maybe I’m blocking the trauma or it just doesn’t matter to me, either way I don’t know and I don’t care to explore the why, I don’t want to put my effort toward that knowledge. What I do know is it was that morning in late August, my whole world flipped, just as that Jeep did and threw me into a curve I never saw coming.

I sometimes still, after 41 years, don’t see some curves coming. The curve that has thrown me is a curve I call ignorance fatigue. It’s happened plenty of times, this ignorance fatigue, so that I really should know the signs like I know the back of my hand. But sometimes I miss the warning signs. One major cue is more than usual irritation with the world and it’s lack of knowledge and access for people like me. I mean, I’m always kind of irritated just by moving through life riding a wheelchair as I encounter non-disabled people and the world in general. I’m also a very happy person, so I think these two parts of me temper each other.

But every so often the so-called “well meaning” actions and words people say to me in half-baked way to make some kind of connection with me. Or the hotel desk clerk (I stay in hotels a fair amount) that doesn’t know their property, even the teeny tiniest, when I ask if the accessible room has a bathtub or a roll-in shower and I have to make umpteen trips to look at rooms before I officially check in to my room, that build up and irritate me, more than usual and they build up without me letting my steam off.

I let off steam by doing my best to not take it personal, using compassion and my breath when I’m getting irritation build-up. I tell myself they don’t know what they don’t know and they won’t know until they know. I breathe and then do my best to educate them as well as be mindful of my own energy and time. As I have aged my self-care skills have grown. But when I get ignorance fatigue going unchecked, I get snappy irritated, I want to shout and swear (I do my best to gage situations where this could have positive impact) and I want to run away, hide and give up.

Like I said, I can much of the time see this curve coming before it gets real tight and I do my work to let go of the anger, sadness, irritation and the loneliness I feel when the world doesn’t value disabled people. The other day I didn’t want to get out of bed, I was over my head and rolling my eyes with ignorance fatigue.

What knocked me out was all the news about the Rio Olympic and Paralympic organizing committee spending the money they had for the Paralympic, on fixing the Olympic problems. Then stating they would have to cut back on services for the Paralympians, while never giving airtime or thought to cutting back on Olympian services. This made the news in a big way, people were writing and reading about the Paralympics, so, yes there is no bad publicity.

But this got me, hard. I ran thoughts over and over in my mind, why aren’t disabled people valued, as non-disabled people are valued? Why can’t people get it?? I know our history, I know about the ugly laws, the fear, the stigma, and the lack of education, whatever. I did all my practices and I was so irritated and so taking it personally and so tired.

So my pitch is “people, we’re all people and I don’t care what the reason is why disabled people aren’t valued, just as I don’t care what day my SCI happened. Get over it, move on, we have to value all people or we cannot survive.

I’m better now, only a little irritated and I’m turning the corner of the curve fairly in control of my vehicle, once again. I’m headed down to Rio in a few weeks for the Paralympic Games and you can bet I’ll be wearing my schoolmarm hat, cocked with a bit of my ever-present pleasant irritation swagger. Wish me luck!