Throwing my disabled ass at inaccessibility
My partner, Caz, is a planner. She likes to know what’s coming. She likes to plan for unlikely eventualities and is the very personification of preparedness. Whenever we’re out and something totally unpredictable happens that requires some incredibly niche tool to solve, Caz will reliably save the day. We were at a festival a few weeks ago and a can of beer broke, the ring pull snapped off. I was a little crestfallen and Caz, seeing that I was in need, rummaged in her bag to find a little metal device. I still don’t know the name for it. A twist and a crank later and the can was open.
Caz, then, will always plan for our outings together, always know the best places to go. Often Caz’s planning yields some quite incredible outcomes. We recently tripped to London to see Cabaret, where the only accessible seating was at the front right by the stage. The tickets were priced for accessibility, though, and Caz, as my carer (we’ll talk about that moniker later), is able to go for free. The upshot was that Caz and I sat in seats costing £400… for which we paid a combined £35 between us. We were close enough to the stage for a performer to whisper in my ear during the event.
Goosebumps.
I, however, am not a planner. Sure, I’ll coordinate 32 doctoral examinations, I’m not incapable of planning. I just… don’t.
Not planning isn’t typically a problem. And in some cases a failure to plan can be a source of the very best stories. I once found myself in the centre of Ibiza at 5am sitting next to a taxi driver who did not speak English, searching my brain for just enough Spanish to describe where we were staying. We got back safely with me shouting ‘todo recto!’ (‘straight ahead’) with the great fortune that our residence was indeed mostly straight ahead.
For most of my life failing to plan has resulted in spontaneity, hilarity, the highest of jinx. Now, though, I use a wheelchair. Wheelchair use creates some serious problems for spontaneity. It isn’t at all guaranteed that I’ll even be able to get inside wherever I’m going, much less find a suitable spot to pee.
You’d think I’d have learned, that I’d plan more carefully, that I’d learn which tube stations are accessible and which restaurants can fit the Rocinante (my wheelchair) inside.
I do none of these things.
Rather, I have become even more comfortable with a level of uncertainty since being diagnosed with Multiple Sclerosis. Lots of people don’t know what they’re going to cook for dinner on Thursday. I don’t know if I’ll be able to stand long enough to cook on Thursday. The risk of relapse, the knowledge that the MS is likely to progress at some point without warning, the possibility of switching to a version of MS that steadily worsens, all make it fundamentally impossible for me to plan for the future. MS forces you to live your life on a faultline, and when you are always at risk of a lifequake shaking you, you become pretty comfortable with risk, with challenge, and with uncertainty.
My lack of planning now collides with inaccessibility frequently, and because I’m now so comfortable with risk, my main method of managing my life has not become to plan more effectively.
But to throw myself at inaccessible spaces.
I’ve just returned from a trip to London with friends and colleagues for a couple of days and we had a great time. When we wanted to go somewhere, though, I failed pretty consistently to plan out routes to take. I didn’t consider whether tube stations had level access, I didn’t ponder the height of hills we planned to climb. Nearly every tube station we arrived at was inaccessible. My immediate reaction was to try to carry the chair downstairs, to wheelie onto tube trains over terrifying gaps, to throw myself at inaccessibility and force myself through. In truth it was the kindness of my friends and of strangers that made my journeys possible and I’m grateful and apologetic in equal measure.
Caz and I went to see my sister at a pub recently, and the doorway outside was a foot off the ground with a small ramp up to it. Whoever built this ramp had no idea how wheelchairs worked, or what inertia was, and the ramp was incredibly steep and arrived at a lip at the bottom of the door you still needed to overcome. To get into the pub in the wheelchair you needed to hit the ramp at speed, thread the needle of the chair through the doorway, and wheelie to overcome the lip, all at once. I looked at the problem and immediately knew that the task would be virtually impossible. I rolled back, and threw myself at the little ramp.
I failed.
The ramp robbed me of my speed and the lip was too high to climb without it. I tipped and rolled back, barely remaining upright. In the end, after getting out of the chair, nearly falling, and pulling it inside manually, I was mortified, apologetic, grateful again for the kindness of friends and strangers.
You’d think I’d learn. You’d think I’d plan. But here I am planning my trip to Cardiff in a few days, considering taking the wheelchair. Is the hotel accessible? Is the venue accessible? Are there disabled toilets nearby where I can catheterise? Is there a lift to the floor I’m speaking on? I have no idea. But when I arrive, if I find the space inaccessible…