Overcoming misrepresentation
I’m in my wheelchair on my way up the centre of town on my usual route. The route is awesome. I get to wheel past a nearby skate park, passing the park run runners at full speed. The park run is 5k and a mix of dirt and paved paths. I’m going to brave that run in my chair one day, I’m building up to it.
While I’m wheeling uphill a family is walking downhill and one of these folk, around my age, so super young, was walking with crutches with a limb difference. I see this woman, I see her limb difference, and I immediately assume that she is finding things difficult, that what has happened is some kind of tragedy, and I feel sorry for her.
I reach the top of town where the hill becomes steep. I generally stand to walk the next few hundred metres. Standing up is hard, my legs and back are stiff and the spinal lesions from my MS can trigger a pain reflex that buckles my legs. Spinal cord injury is weird, whenever there’s pain, or indeed any strong sensation below the waist, my toes literally curl. The first several steps are, therefore, challenging as I fight the legs’ tendency to buckle with my own compensatory will and strength.
My legs and I enter into a fencing match where they lunge and I catch myself, they sidestep and I dance back to the centre line, they stumble forwards and I turn it into a deliberate thrust forwards. Ok maybe it’s less fencing and more drunken boxing.
When I’m standing and walking, especially in those first several steps, I feel like a totally different person. From pushing confidently, moving fast, the wind through my hair and the music in my ears – to shuffling. My movements change from fluid and graceful to stiff and deliberate punctuated with the occasional sudden and uncontrolled liquefaction.
I catch my reflection in a passing window and the woman I see there is hunched over her chair as she slowly pushes it. My intuitive, instant interpretation is of someone struggling. In my reflection I see someone finding things difficult, someone befallen by tragedy, and I feel sorry for her. Just for a moment.
When I see myself in this way the feeling is upsetting, it jars with who I consider myself to be in this world. I suddenly realise how unfair my conception of the woman approaching down the hill had been. My insides twist.
I try to understand what has happened. Why does my perception shift so uncomfortably between two disparate concepts of myself, one heroic and the other tragic? I think it’s to do with the representations of people we see around us. The small number of physical embodiments of people we encounter in the world is nothing compared to the absolute buffet of representations we see on social media, in films and other content. Literally everywhere I go online I see stereotypes reflected back to me. The associations between those representations and their contexts are consistent and have become my automatic interpretations.
The primary issue is that the eyes that content is created for are normative eyes, the eyes that belong to able bodies. Whenever disabled people are represented we are framed in a way that makes sense to able-bodied people because they simply don’t know how to relate to us. Our representations bend toward tragedy because it’s instantly readable, familiar. The underlying assumption that informs and is reinforced by such content is that to be disabled is to suffer, that to acquire disability is to befall a tragedy. It’s an odd kind of othering given that I can’t imagine anyone in this world living a full life who hasn’t experienced tragedy.
The other kind of content I see glorifies disabled people for overcoming the horrors that have befallen them. Presenting disabled people as inspiration reinforces the same view of disability as a tragedy, albeit one that people can heroically overcome. I find this kind of content disturbingly voyeuristic. Personally, I love collecting the shopping in slow motion to the emotional orchestrations of Hanz Zimmer (think Inception), but it would feel weird for someone to feel inspired watching me.
‘Inspiration porn’, content that farms engagement through depictions of disabled people doing everyday tasks, framing them as overcoming a seemingly insurmountable barrier of disability, reveals the gulf between able bodied and disabled perceptions of disabled people. That enormous distance between us, that sees me wheeling uphill in my chair with Captain America levels of heroism while I’m pondering whether we need to buy more rice for dinner, has to be a consequence of the poor representation we see in the media. Our genuine stories just aren’t told.
My own views of that woman and her family strolling downhill, and my own view of myself, is distorted thanks to misrepresentation in the media. When I’m wheeling fast I’m the inspiration, and when I stand up from the chair I whiplash myself into someone struggling, suffering.
The challenge here is to break the programming of seeing myself as a tragedy or an inspiration In doing so, I overlook the depth of my own character. I don’t notice that my hair looks good, or that I’m dressed real pretty, or that I was kind today, or an asshole. My own self concept bends the light and I become caricature.
I’m sorry, my disabled friend coming downhill with her family. I’m sorry because my perception of you was fully informed by wider misrepresentations. I pocketed you right into the tragic category. I didn’t have space in my head for you to be a fully realised person in the world. I’m sure that the expression on my face was that same sad sympathetic smile I see on the faces of my own onlookers. And I’m sure that I contributed to you finding it hard to see your full self in the windows you passed.