Once I insisted on hiding my crutches whenever there was a camera pointed at me. I guess I wanted to feel like they didn’t constantly follow me everywhere I went, just for a moment. I was frustrated. Impatient. So I posed without them. Even if I lost my balance and fell over or looked awkward trying to stand straight, I didn’t care. I know — weird that I cared how the crutches looked but not how physically-unstable I obviously was without them. It’s because, at that time, a single moment without crutches was an eternity of relief. I just didn’t like how they looked or how having them captured in photos made me feel. Like there was never a minute to stop and breathe. Like my disability was permanent. Inescapable.
In my case, of course, being disabled is both permanent and inescapable. CP isn’t going away. It hasn’t and it won’t. I’m not going to wake up tomorrow no longer disabled. I won’t suddenly be able to get up and walk across the room unassisted with a spring in my step like Grandpa Joe in Charlie and the Chocolate Factory. He’d been bedridden for twenty years then suddenly started skipping and jumping around at the mention of a winning golden-ticket. Right — no. Not in the cards for me. There’ll be no spontaneous singing and dancing. And, for that matter, no sudden, miraculous end to the pain and weakness in my legs. I accepted that a very long time ago. It’s like that saying “it is what it is”. I usually hate that, both the words and the sentiment, but it makes sense here. CP is my reality. As you can imagine, my attempts to run away in both the figurative and literal sense were futile. No sense running from reality. It never worked however many photos I took without crutches.
There wasn’t a single, isolated moment when I stopped resisting and embraced disability as crucial to my identity. I mean, I can make one up but it seems like a waste of time. The journey to embrace CP was slow-burning. A gentle buildup over time. Starting to work on myself, I began to let go of those angsty bits of internalized-ableism floating around in my subconscious. I’m not a burden. Even not being able to run from my disability is ok. I began to accept who I was — CP, crutches and all.
Once internalized-ableism was on its way out and acceptance poured in in its place, I started posing with crutches more and more. I was sure to stand tall and proud, no longer wishing someone could photoshop out my crutches. Yes, I literally wished that. I disguised it as a joke but it never was. Funny to think how those pictures would have looked if I’d actually gone through with all the effort. I remember my brother telling me “dude, it’d look like you were flexing or something” about one picture cause my shoulders slightly leaned forward on the crutches — necessary if they’re going to hold you up. It made me laugh.
Posing with crutches, I didn’t get as tired. I leaned on them for balance and didn’t rely on someone else or a wall or even a fucking tree (and not just once) to hold me up. Yes, you read that right — a tree. A few times on vacation when I wanted a picture, I asked the camera-holder to take it with me next to a palm or whatever was around so I wouldn’t fall over. Tried my best to make it look natural. I joked about it, too, of course. I was a master of self-deprecating humor, you know. Another coping mechanism, tried and true. Can you blame me? Life is serious enough.
Now there are times when I’m with my boyfriend and want a picture with him without crutches. Not because they still make me self-conscious. It’s not that. It’s like a challenge, a way to push myself to depend less on them and let the fear of falling go, putting a hundred percent of my trust in him. In other words, truly knowing he won’t let me fall. I logically know he won’t because, of course, I trust him but there’s a weird mental block, fear telling me I’ll fall even if my boyfriend’s holding me. I know it doesn’t make sense — he obviously won’t let me fall and he’s 6’2, for crying out loud — and strong. He can easily hold me up if I feel like I’m falling but somehow that doesn’t make a difference most of the time. Fear is the worst, I’m telling you.
It reminds me of slow-dancing. It’s almost the same idea, if you think about it. There’s an image that runs in my head from time to time of my boyfriend and me slow-dancing. Sometimes I just think it and, from time to time, we even try it — like practice — in his living-room or mine. Same deal with trusting him — that I won’t fall, that I can lean in and not hit the floor. Dancing has never been my favorite activity. I’m beyond self-conscious like everybody in the room is staring at me. I know, I need to get over myself, right? Nobody’s watching me dance. They’re having good times, not worried about how I look. I doubt anyone cares that much. But that makes absolutely no difference in my head once fear takes hold. It’s interesting, though, cause, when we dance, I’ve noticed I don’t move my legs at all. They stay rooted to the floor like they’re screwed there. So, knowing that, what’s the problem? Why do I care? The point is, I shouldn’t — not at all. What they think isn’t important — being complete is, whether it’s with crutches or canes or wheelchairs or whatever. Photos should represent the reality of the moment. In those moments, I use crutches so there’s no point in putting them outside the picture.
I spent so long trying to do that but truthfully crutches allow me to do a lot. There’s nothing to be ashamed of cause they give me so much freedom and independence. Yes, it can be frustrating from time to time. But I just think of the alternative, imagine the crutches falling and breaking or something and me stranded with no way to go anywhere. It’s scary to even contemplate so I don’t. I try to walk into a room like I belong, stare straight at the camera and smile.
The Spastic Diplege 