Confidence
I’m browsing the MS subreddit today when I come across a poster, whom we’ll call ‘The Rookie’ (intended with affection), talking about the totally valid concerns about relationships, with a sentence that hit me in the feels with all the precision and impact of an orbital bombardment:
‘Who will want me now?’
I’m six years into this thing and for sure I hear you. MS destroys confidence in a few different ways. We’re going to count down to the worst of them, mostly because I’m going to need a run-up.
#5 Feeling attractive
In film and TV people are frequently depicted as attractive, selected for their attractiveness, positioned in stories as desirable relationship options. I don’t think this is a good thing, it pushes upon us a thin, young, polished, idealised femininity, and a tall, muscular, stoic masculinity. These are often unattainable ideals but creating a visible gap between what is and what should be is where products and services go. Yay capitalism.
Disabled people are only occasionally depicted as attractive, selected for their attractiveness, positioned in stories as desirable relationship options. I’ll be straight with you, we’re rarely included at all, much less depicted as a realistic option for a relationship, let alone as a desirable one.
The problem here is that the moment we enter into disabled life we move immediately and wholly from ‘potential date’ to ‘I didn’t even know you could date’. Capitalist beauty standards are designed to be just out of reach to most people. They’re carefully designed that way. But they’re not aiming for these standards to apply to us at all. The products are frequently figuratively and literally out of our reach.
These capitalist beauty standards are designed to mess with self-esteem, to create low-key shame about our bodies and faces, and that’s for most people. But the bodies, faces and minds of disabled folk frequently fall well short of these standards. So while capitalism etches away at the self esteem of most people, it sunders ours entirely.
So yeah. You’re going to feel unconfident. But the power these standards have over us is something we can choose to deny. We don’t conform to society’s norms, we never have, and we can be free of them. We can find looks that work for us. We claim our place in this world and thwart the expectations of the beauty industry.
What is beautiful?
You are.
#4 Fatigue and giving energy to a partner
Disability is a full-time job. If you’re anything like me, with a full-time job (nearly), then you’re doing two jobs. This is fundamentally untenable. I mean it can be done, but it isn’t anywhere near comfortble.
Take today for example. Today I was due at a school an hour away for an observation. I’d be around a bunch of children for a couple of hours in a primary school. This was a fun level of challenge on a regular day back before MS was chasing me around like an invisible bear. But now? Things are… harder.
First I need to manage the drive, which requires me to use a catheter to ‘tap the keg’ just before leaving and timing my water intake so that I don’t get dehydrated but also so that I don’t need to pee. If I need to pee I’ll need to stop somewhere and catheterise. There’s no guarantee of a disabled toilet being available, no guarantee there’ll be sufficient soap or available sink space close to the toilet for me to sanitise my hands so I can catheterise safely. Besides, I’ve only got four of those keg tappers for the day, and I’ve already blown through one before leaving.
Then I’ll need to move around the school. I need to park close so I can then walk to the school, go in through the gate, register, and go do the observation in the playground where seating is by no means guaranteed. Or I take The Rocinante. The nightmare decision is between the chance of running out of leg power during the visit and risking collapse or falls, or needing to navigate around a primary school in a wheelchair. The Rocinante will draw a lot of attention and I’m not there to be the subject of the observation. Primary schools are less accessible than the London underground and if I wheel up in the Roci I’ll spend the next few hours explaining, apologising, wheely-ing through tight doorways, and possibly flattening a child.
Then there’s the stress of the meeting, liable to spike my body temperature, numbing my hands and slurring my words. A psychologist that stumbles while slurring her introduction is not the lingering first impression I’m aiming to make.
And that’s all way before we consider that I only have a certain number of spoons for the day. Spoons, for the uninitiated, are units of energy, once replete and now sparse. If I blow all my spoons in the day doing my job then I have nothing left for family and friends. I’ll need to cancel plans, curl up under a blanket, boil some pasta, and rewatch House. Because that’s all I’ve got left.
Without energy for friends and family, let alone a date, it’s hard to feel confident. When do I meet people? When do I go out and have fun? Fun was once a thing, right? I’m sure I’ve heard somewhere that people have fun sometimes.
#3 Meeting people from a chair
I don’t know how to make friends from a chair, much less a potential romantic partner. I mean I imagine it’s the same as standing but… it really isn’t. I have to stand to hug someone or they have to stoop to hug me. It takes effort to spend time with me. Getting to a place needs me to plan in advance, or for me to force other people to be as comfortable as I am throwing myself at inaccessible spaces. I’m not an easy option any more. And the thousand little frictions become abrasive, as barriers impose themselves squarely between me and potential new friends and partners.
This one is hard.
I don’t have any advice. I don’t know how to do this myself yet. I’m a work in progress, what can I say?
#2 Who even am I now?!
MS forces us to become someone new frequently. When you undergo so many changes physically you have to change psychologically to cope. I never saw myself as anything of an athlete and the largest muscle I had was my mouse clicking finger, that bad boy was stoked. Yet here I am pushing 6k every day in a wheelchair, 10k once a week.
I used to be deeply risk-averse but what started as a flirtation with risk has quickly become a ‘my place or yours?’ kind of relationship as we become intimately acquainted on the regular. I always enjoyed a panic every now and again but now panicking is just a Tuesday, and anxiety is just another friend with benefits… but the benefits are mostly sweating heavily, breathing hard, a racing heart… so, yeah, a friend with benefits.
The upshot of all this is that the person staring back at me in the mirror is someone who flies downhill to the open mouths of passers by, who flexes, who says ‘yes’ way more often than she says ‘no’. When I look in the mirror the woman I see staring back at me is not someone I recognise. The physical and emotional changes I’ve undergone are as much a transformation as transition was, and both times I was surprised by the person I became.
The problem is that we can’t become familiar with ourselves. The things we want, that we enjoy, the kinds of friends we pull close, the kind of partners we’re compatible with, and the worlds we inhabit, are so strange.
The skin I’m in is so surprising that… I don’t know how to be this person. What am I like now on a date? Can I be funny from the chair still? Will I have the energy to be a good person to be out with?..
Who will even want me now?
Right in the feels, I’m telling you.
#1 Disability is bad.
This one’s the real kicker. When people see us, they don’t easily see us. I’m a lot of things. I’m terrible at planning, I’m gregarious to a fault, I love talking to people and consume intimacy like it’s a good baguette. I don’t understand social boundaries and have no time for them. If someone is willing to get emotionally intimate with me they will find me willing, nay enthusiastic.
And I’m disabled, but on the list of my qualities and faults being disabled is close to the least important.
But it feels all too frequently like my disability is the most important thing about me. It flavours every interaction like a bad smell. I meet someone I haven’t seen in a beat, we say ‘hi’, catch up, but I can see in their expression they're impressed that I'm still breathing. When I do something really complex like… scratching my arse… people are downright inspired. People say ‘you look well!’ with surprise, nearly incredulity. And they ask about my health. I'm healthy, I'm a health machine, I pushed 6k in my chair this morning!
I’m more than this chair, I promise. I’ve been reading good books. I’ve been playing Dispatch and Invisigal might be into me and I’m totally head over heels for her. Sure I have brain damage but I want to talk about Stranger Things!
Ack.
You see, this makes it hard to feel confident, even to feel like a whole complete person.
…
Oh crap we get to this point in the post and usually around now I say something positive or uplifting, something about thwarting expectations, about taking up space, about proving preconceptions wrong and being an outstanding date. Confidence is key in the dating world, it’s hot as all hell, and being confident with a disability, especially from a chair, only amplifies its effect.
But, The Rookie, you're not alone. I frequently feel unconfident from the chair.
And maybe that’s ok right now, confidence takes time, and it takes doing the thing to achieve. I’m off out tonight to a show in London, and I feel the unspoken boundary I’ll need to cross to do so. It’s a lot. I’ll need to navigate trains and the tube. I’ll be in the accessible seating area watching from the Roci. I’ll be immediately different to most everyone else, though maybe I’ll meet some incredible disabled girl who gets it, gets me, and doesn’t mind that I’m trans. It’ll be trickier than it should be. But doing the thing, finding connection, making friends, is how we become more confident.
We do the thing. We put ourselves out there. We open ourselves up to the experience. We pick up our feet. We let go.