Tragedy or triumph
One of the challenges of poor representation is that visible disability is so unfamiliar. I watch content online, I’m enjoying Severance season 2, and generally unless I go out of my way to find disabled content (I’m looking at you TwoDisabledDudes podcast, so good) or stumble across one of the rare stronger examples (e.g., The Expanse) I just don’t often see disabled people represented. When disabled people are represented their disability tends to be a fairly fundamental aspect of their character.
I guess it’s a pretty fundamental aspect of my character, too. I mean I have a disability blog, so being disabled must be fairly fundamental. But while for a time MS was everything in my life, it was almost the whole of who I was in the world, over time it has diminished. I think it all too easy to consider that my character flaws, my quirks and weirdnesses, are all a consequence of MS. Of course I’m reckless, I have MS. But while MS touhes upon every aspect of my life, the reality is that MS is simply one part of the many facets of what make up the complex crystalline structure of my life.
I’m still reckless and impulsive, I’m sensitive to rejection. I think people are mad at me basically all the time. And I easily get overenthusiastic. But I’m all of those things and disabled, I'm not these things because of my disability. My disability does influence these… uh… foibles. I’m scared a lot because of my disability and I respond with a drive and overenthusiasm that has led me to crash in my chair a good few times. My recklessness gets me into trouble when I don’t accommodate my disability properly and dance in the shower. And feeling like a burden really plays with the possibility of rejection. Disability, then, is pretty integral to who I am, but not in the way able bodied people might anticipate.
This is the issue with representation, it just doesn’t offer a realistic depth of characterisation. We’re complex people generally and throwing disability into the mix creates a web of impacts like fractured glass, no part of us is unreached, unaffected.
Without adequate representation people misinterpret the reality of disabled experience. Worse, the lack of representation makes disability itself unfamiliar. I think the upshot of a lack of representation and of superficial representation is that visible disability paints a shallow picture in the minds of onlookers. When people see me sitting in the chair, indeed when I see myself sitting in the chair, it is hard to see me. When I’m in the Rocinante all people see is the chair.
There are some advantages to this. When I’m walking around the shorter distances that permit me some ambulation I generally am quite mindful of my presentation. There is a vigil that results from being trans in an often unkind world. You always have an eye out for possible dangers around you. Mostly it happens without you noticing, until someone across the street double takes in your direction, or someone across the bar starts to stare, or someone within earshot laughs. In those moments your attention narrows upon the potential danger and you stiffen, ready to defend yourself. It’s a way of being in the world that only marginalised folk will know. But when I’m out in the Rocinante all people see is the chair. When I’m standing and I talk to someone I can accidentally slip down into a more masculine register for a syllable or for the start of a spontaneous laugh, and those moments are particularly risky because people can identify you as trans. But when I’m in the chair and I slip with my voice no one notices. I wonder whether people just chalk it up to disability, categorise it in ‘weird wheelchair stuff’ alongside strangely small storage compartments (if you know you know), dirty arms to all your clothes, and wearing two pairs of gloves simultaneously.
In truth this is intersectionality invisibility. My trans identity is almost totally invisible because the chair is so obvious. It isn’t that the chair looks obvious, it isn’t glowing, it isn’t on fire, and it doesn’t take off while spewing showers of confetti. It is that wheelchairs are so rare, that walking is seemingly so ubiquitous, that the chair is an oddity, a surprise, a marvel. When people see the chair they’re often quite impressed by it. When I wheeled Firefly into the wheelchair shop I was quite confident in her, spurred on by the often open admiration from folk I met, but the wheelchair user selling chairs almost laughed out loud when he saw her. To everyone else it was amazing that a chair could have wheels and that one could navigate the world from a seated position, but to my new friend Firefly was barely recognisable as a wheelchair, more a poorly constructed armchair that someone had optimistically bolted wheels onto.
Now the Rocinante deserves people’s attention, she’s the real thing, but the responses I get in the Roci are exactly the same as those I got in Firefly. People are all either impressed or saddened, and everyone is curious, and nearly no one has any frame of reference to interpret what they are seeing other than the one time they’d seen someone using a wheelchair. That person they’ve met was almost certainly framed as being either the victim of circumstance, or an inspiration in their overcoming of it.
Here’s the real rub. I only see the chair. When I catch myself reflected in someone’s eyes, mirrored in their expression, or when I see myself in the reflection of a train carriage window, the first thing I see is the chair. I don’t see myself. I can’t see myself.
Think about this for just a moment. Imagine not being able to see yourself. As people’s expressions and furtive glances juxtapose against your self concept. As your own perception of yourself no longer reflects the depth of your character, no longer reflects your flaws, your strengths, your embarrassments and your charm and your silliness and your regrets. And your attractiveness.
We’re going to need to talk about disability and attractiveness. I know I’ve said this before, we’ll get there. But when all you see is the chair, when you don’t see yourself, you don’t see the parts of you that others see. You don’t notice your eyes. You don’t notice your smile. You don’t notice the little foibles that someone else might find cute.
I don’t yet know how to counter this. I think a start would be to find the people who see past the chair, and to spend time with them, to ask them how they see you. To seek affirmation from the people who love you.