When the world becomes smaller
Something strange happens when you become disabled. It isn’t all at once, it isn’t some dramatic downsizing like an unexpected house move. But it is noticeable.
The world we inhabit is crafted by able people with able people in mind. It isn’t a deliberate decision, no one is sitting in robes around a candlelit board room steepling fingers over a heavy table deciding which group to marginalise next. Rather the people who are building and maintaining the systems and structures that form the foundation for our lives don’t represent the people who are marginalised by them. It’s a logical circle, marginalisation impedes representation and a lack of representation creates fertile ground for marginalisation.
What’s wild to me is how little I realised how exclusive life’s club really was. I thought everyone was invited and if some people didn’t turn up it was probably a decision on their part. You see, the club owners describe its welcoming atmosphere and inclusive vibe and while there are little cliques in there they all have done their unconscious bias trainings, they have their inclusive policies, and everyone in there smiles at each other safe in the mutual understanding that they’re all good people, and good people don’t exclude folks.
But the club has a narrow doorway, the toilets are upstairs, the music is loud, and the bouncers are real assholes.
What you notice when you become disabled is how the tasks of daily life, the routine interactions with the foundations of society, are somehow just a little harder than they once were. Everything is just a little more challenging. In psychology we call this ‘behavioural friction’, how small impediments and inconveniences can make it cumulatively harder to actually do the thing. Maybe I want to go outside to exercise but I need to wrap up warm, I need to get the wheelchair out, I need to find my headphones, and all of these add barriers I need to overcome every time. The more barriers there are between us and the activity, the more motivation we need to participate.
When you’re disabled everything, and I do mean everything, comes with additional friction and life at its most fundamental becomes abrasive. So the temptation to refrain from participating, to not go to the club, becomes stronger. Sure, not participating is a choice, but it’s a pretty forced choice.
The effect it has is insidious and it took me a long time to realise what was happening. I was making subtly different decisions, masking more and interacting less, declining invitations a little more often, becoming cosier and more comfortable in the safety of home. Gradually I became so focussed on surviving that I forgot to live…
And my world became smaller.
I was startled when I realised just how isolated I had become. I cursed myself my reticence, and cursed the world its impassivity; the challenge that I faced participating was also a challenge others faced in inviting me and my reluctance to accept invitations had led to fewer being offered.
So I made a decision. I wrote two new rules for my life that I first tested when I took a solo trip in my wheelchair to Vienna, and which would then become new foundations for my life.
Rule 1: Meet as many people as possible
Rule 2: Accept every invitation
In Vienna these rules got me into lots of trouble. When I flew in I got into a taxi where the driver and I did not share a language and we shared some pretty tense moments trying to work out where in Vienna my hotel actually was. I wheeled my ass through strange streets to find the conference, and I went out for lunch and for drinks with strangers who I hoped with all my heart might become friends. I ended up at a drinks reception in the centre of the city with no way to get back to my hotel and no clear sense of where my hotel even was. The whole adventure was frankly terrifying. But something did change.
On my way to the airport in London I met two women both heading to different flights, one on her way home to northern Spain, and one to see her son in Italy to go house hunting. The rules dictated that I meet these women and we had a long conversation about our respective impending journeys.
Recently I was wheeling around Winchester and I met one of these women walking her dog. She came up to me, immediately recognising me in my chair, and enthusiastically said ‘hi’. I asked her about her son and wondered if she had found a place she liked. The woman looked at me surprised, I think that I had remembered so much about her, and a moment passed between us. Connection. I still regularly meet and email people from Vienna, one of whom has become a close and valued friend.
In Vienna I had nothing of my regular life. I was alone with my medications and my wheelchair and my wits and that was it. What starting fresh for a few days made me realise was that I had been one of those robed board members; my life had been built by an able bodied person for an able bodied person.
In my life as I had constructed it my wheelchair and my disability imposed barriers to relationships and to socialising. But in Vienna I had to construct a new life for myself, one that formed around my disability and my wheelchair. I built in opportunities to rest, I chose a place to live that was accessible to me, I used my wheelchair consistently and acted on the assumption that it would be with me at all times. With the structures and systems I built for myself I minimised the friction I experienced and that meant that I could respond to the friction that remained by running toward it rather than shrinking away from it.
In London recently an elevator was out of order and my instinct was to take the escalator in my chair. Friction meet Cora.
My world now experiences a force upon it, with the world outside and all its inaccessibility imposing upon it a pressure to become smaller. But all that means is that I need to create an equal and opposite pressure to help it to expand.
So this is my vow. I will meet as many people as possible and I will accept every invitation. I will find and nurture connection wherever I find it, and I will push my way back into the world. I will find somewhere accessible to live and rebuild my life as a disabled person, and when I find friction…