The other night I sealed a pact with an old friend – we signed a Mutual Moan Covenant.
Basically it lets one call up the other and vent when it all gets too much. That’s an all too frequent occurrence. It’s an occupational hazard of living with disability.
What usually derails one or the other of us, turning us into a tangled ball of "arrrggghhh" that requires venting to deal with it, is not the big stuff; the impairments themselves, the health challenges we face, the big picture themes about which I’ve previously written in the run up to the International Day for Persons with Disabilities.
It’s the little things. The constant, nagging pieces of grit in your shoe (which I now only notice in one of my shoes because my nerves don’t work) that build and build and build until you have to sit in the middle of the street, take off the Nikes and shake them out while the rest of the world gawks. Being gawked at is, of course, one of those irritations.
For me, this week, the pieces of grit are coming in the form of forms. These have to be filled in for stuff that’s necessary for me to function. They have to be renewed every few years because government in Britain can’t get its empty head around the fact that some conditions are incurable and don’t stand any chance of improving as time passes. To the contrary.
I shudder to think about the amount of time spent and the amount of money wasted on pushing paper and pixels by the constant renewal application machine, and what it might be better spent on. It’s not as if there’s a shortage of things in need of funding.
You’d think that the interwebby thing would at least ease the process. You’d think. But you would be wrong. My wife requested something called an eConsult so I could deal with one of these pieces of administration – only to find that it was completely worthless. A text arrived saying my GP still required my presence in the surgery for a signature. It couldn’t be done with the online version. This in the middle of a pandemic, with a new coronavirus variant putting a premium on limiting social interactions.
Disability is exhausting enough as it is. Your body inevitably gets fatigued when parts of it don’t work the way they’re supposed to. Sleep can be challenging. Drugs can carry unpleasant side effects. The persistent, vexatious and largely pointless low level government harassment in addition to the f***ery imposed by my body inevitably leaves me feeling like an extra from Night of the Living Dead by the end of the week. And by my reckoning there’s a horde of us in the same state.
Beyond the bigger challenges, like being able to get around smoothly – the harassment disabled people face also includes reminders about forms from government agencies, passive aggressive reminders when they’re not filled in, managing multiple medical appointments and patronising press releases from government departments featuring quotes from the latest person sent through the revolving door marked “minister for disabled people”.
OK, most disabled people don't have to deal with the latter. That really does count as a proper whinge. But maybe it’s more than that because it is rather symptomatic of government’s general attitude, the mixture of lassitude, callousness and contempt with which it treats us.
My wife spotted Boris Johnson wearing a purple tie the other day and wondered if it was motivated by a desire to mark the day. That almost turned me into one of those more aggressive, fast moving modern zombies, think 28 Days Later or World War Z. But this goes far beyond what might have been a cheap gesture from a prime minister that the nation essentially purchased from an Amazon Marketplace seller during Black Friday deals week a couple of years ago because it couldn’t think of what else to do.
I say "government" harassment rather than harassment from "the government" deliberately. It would be so easy if it was just the evil Tories being dastardly, and if we could shake our fists in the hope of Keir Starmer riding down to save us on a cloud like Monkey from the old TV series. But in the real world it doesn’t work like that.
Ableism is a problem that crosses party lines and encompasses all branches of the state, central and local, permeating through and infecting the civil service, quangos, even our beloved NHS. And it doesn’t matter if there’s intent behind it or not. The net result is the same.
The problem with all these small irritations is that while they might look like ‘first world problems’ they are anything but if you have a disability. They represent a chronic issue in addition to the pains, discomforts, and other challenges we have to overcome just to get up in the morning, to go to work, to live as normal a life as possible.
They regularly threaten to become gigantic slobbering monsters that threaten to pick us up and throw us all into one of those revolting (by day two) Glastonbury toilet pits. If you’ve ever been to what’s known locally as the Pilton Pop Festival you’ll know exactly what I mean by that.
So here’s a message to all those wearing stupid ties, putting vapid quotes atop press releases and pretending to care. If you want to prove that you do (looking at you here Keir) Remember the little things. Think about them. Act upon them. It isn’t so hard. Because I hate the fact that conversations with my friend frequently dissolve into moan-a-thons. I’d really like to set our pact ablaze. We’d occasionally like to have a laugh. Is that really too much to ask?