Empathy is difficult. It’s harder when the person with which you’re trying to empathise has a brain wired in a way that’s not only completely different to yours, but limited in its ability to perform certain socially crucial functions.
Picture yourself stood amongst a roomful of senior Oxbridge neurophysicists, engaging in a pacey debate as to some incomprehensible intricacy of molecular mechanics: the wrenching awkwardness you’d feel being faced by an impenetrably complex social event – you hardly dare attempt an approach, never mind offer up conversation.
I’m sure you’ve got the gist, but we’re going to go a little further.
Imagine that this roomful represents the overwhelming majority of people in the world you live in.
Every interaction is too fast; manner of speech too complicated; subject matter too complex.
Outside of your family, the people you engage with are mostly paid to do so.
Those with whom you try to engage are often awkward and the conversation fleeting.
Where do you even start?
Being a person on the autistic spectrum and/or with an intellectual disability is difficult.
To better word that statement: people on the autistic spectrum and/or with an intellectual disability find it difficult just ‘being.’
Stuff we don’t even think about: crossing the road, putting on a jumper when it’s cold, eating when hungry, reading signs, following conversation, picking up on social cues, speaking (!) – all of these essential and, for the majority, automated functions are hugely trialing for these people.
For more than a year, I’ve been hanging out with a guy facing such daily struggles as part of the ‘Befriending’ scheme organised by Autism Guernsey and Guernsey Mencap.
His name’s Mark, and he’s a few years older than me, likes cars and bikes, loves a chat and loves life in general.
In point of fact, we’ve both a penchant for head-banging to heavy metal (aggressively and in unison), trying out new activities, spending time exploring out and about and just talking about anything and everything: we’re perfectly similar friends. But, from a purely intellectual standpoint, couldn’t be more dissimilar.
The biggest thing I had to get over before signing up to the scheme was my pretensions as to people with disabilities that are ‘invisible’ – “Won’t it be awkward? What do I say? Should I speak slower? Christ, isn’t that condescending?” And so on, ad infinitum.
One can find such pretenses build themselves in to a mental block – “I could never do that!” “I just don’t know how you do it!”
It’s completely illusory.
I count Mark as one of closest friends. He has the same outlook on life as I: it’s too short not to be doing something or talking to someone, so you’ll find me doing one or the other. The salient difference is just that you won’t find him writing or articulating that sentiment. Or understanding the word ‘sentiment.’ So what, eh?
An intellectual disparity doesn’t cheapen a friendship. For me, it’s cemented it: the infinitesimally small ‘problems’ you have to overcome, the anxieties you discuss and assuage and the fun times you have together mean more because it isn’t straightforward. (Disclaimer: it can be a fecking nightmare!)
Mark, unlike many on the island, has a loving family and network of supportive people (I swear the boy has a fan club), but he didn’t have something that you don’t crave unless it’s missing: the ability to just ‘be’ with somebody the same age and gender as you. Chill out. Chat shit. Listen to music. Burp. Laugh. Chirp. Be silly, have fun, feel good.
A relative of his said to me that, “it is great for him to be spending time with someone who isn’t related to him or paid for it!”
This is the crux of the issue. The onus should be on us, as able-bodied and able-minded individuals, to give people like Mark a quality of life experience equal or at least akin to ours.
I just rattled out these few hundred words whilst emailing, phoning, texting, talking, buying, eating, typing, writing and whatever else (not quite all at once). I’ve had more interaction, activity and engagement in the last couple of hours of my life than too many autistic Guerns my age would get in a week (or more) of theirs.
You can change that.
Selling volunteering by relying purely on the philanthropic, or charitable, instinct of people doesn’t work (I intend to write a piece on why that is).
So, I’m going to tell and sell some of my side of the bargain too. It’s going to sound preachy, perhaps insufferable to some, but it’s going to persuade at least one person to take the plunge and sign up to this so I couldn’t give a flying shit.
NO LONGER GIVING A FLYING SHIT
With the wider perspective afforded by watching a person struggle through simple tasks – I mean so simple they’d only ever comprise one of a three-part multitasking effort – you start caring a bit less.
The unreliability of the Wi-Fi connection in the coffeeshop this afternoon has frustrated me. Enough so, despite being a British national, that I went to ‘have a word.’
Now, I think of how frustrating it must be to have something to say and have not the vocabulary or capacity to word it.
Worse, still, if you have nobody to say it to. How cripplingly lonely and hopeless must that make a person feel?
Shits given about how you [look/sound/smell/didn’t rake in half as many likes as Claire’s picture despite taking about fourty of them to find ‘the one’]: lessened.
People who are struggling to live a life that has meaning and joy matter more to me than how I appear to other people. I don’t care that what’s-her-face said something about me, I don’t care about the snooty stare a pinstriped prick’s just shot me on account of my head tattoo and I care so much less about people taking the piss out of this article than the small band of people who act upon it and change someone’s life, and their own, immeasurably for the better.
Superficiality is fucking meaningless.
Despite being fairly active on Facebook, I can only recall twice sharing anything in respect of my volunteership. Mostly because it used to piss me off sensing the severity of narcissism when Clive you went to school with posts some self-indulgent bull about how he shaved his pubes for charity, raised fifty quid and the profile of some already-established charity, thinking he’s fecking Bono.
With the liberty of keeping my flying shits, I don’t mind championing a charitable cause at risk of sounding self-righteous or holier-than-thou. I’m certainly not holier than anyone and I really, really don’t do a lot – the bare minimum (having your girlfriend come home after a seven hour nonstop shift supporting the severely disabled has taught me that much).
I just spend a few hours a week making a mate’s life much more enjoyable. Why would you not sacrifice an hour of your Sunday to do that?
GIVING A FLYING SHIT
Woaaah, but dude, you just said the opposite thing?! PATIENCE.
Knowing the plight (I hate to use that word, but it is perfectly appropriate) of those born with differently wired brains or intellectual capacities to mine matters to me.
My family matters to me, my friends matter to me and Mark really matters to me.
Many a shit will be flown on their account. Not because of guilt or glory, but because I actually care about somebody other than myself now.
Volunteering’s a choice, I want to help
Give it a shot and you’ll develop that want too.
Mark’s taught me too much to ever do justice in a couple of hour’s worth of hungover typing, which I assure you is only being done on account of (a cocainesque caffeine high and) the debt I owe this man for having given me something more important than any lottery winner or Dan fucking Bilzerian can buy.
My greatest life achievement will be persuading one of you to befriend someone through this scheme.
If you would like to find out more about the Befriending scheme or wish to sign up, ping an email to firstname.lastname@example.org and the Befriending Co-Ordinator (delightful and inspirational lady) will be glad to help.
You commit four hours of your month (say, an hour a week) for a year, you’re trained by experienced professionals and then ‘matched’ with a ‘befriendee’ after having met them and mutually agreed to said match. Personally, I started with an hour or two on Sundays which increased to a couple of hours on Tuesdays, few hours on Sunday and whatever pops up in between,
If you’d rather just chat it over, feel free to ping me an email on email@example.com
Just liking and sharing this piece on social media will be massive help.
Thank you in advance, have a lovely evening and Happy Tuesday x