Monday, 16 November 2015

The funny side of disability

Ok, one last discarded writing pitch that I'm dumping on my blog. It's about the funny side of growing up with a disabled sibling:

Growing up with a disabled sibling can be many things; character building, challenging, emotional. For me though it has mostly been quite funny.

Don’t get me wrong, it hasn’t been without its difficulties, but those have largely come from external sources – bullies, local authorities, this fucking Government – and not my brother, who for all of his quirks, is probably better value than a ‘regular’ sibling.

I can’t say for sure, my parents stopped at two so he is my only frame of reference, but you can judge for yourselves with my selection of his best bits below.

Before I begin though, a bit of context. My brother has brain damage, caused by lack of oxygen at birth. His disability therefore doesn’t manifest in a defined way. You will see how much of an understatement that is in a moment.

He is in his thirties but has an estimated mental age of five, so is not much different to most men his age, amirite ladies? He has a unique sense of humour and wouldn’t make hack jokes of the like that his sister just did. He has practically no filter, no social awkwardness, no concept of many of the things we take for granted – time, money, death. He’s the most interesting person I know and that’s why I wanted to write this. I have written seriously about him before - https://www.mencap.org.uk/community/family-blogs/christinas-blog - but too many pieces about disability are downbeat; all about the struggle. The good stuff needs to get top billing for once.

Honesty
My brother is very honest. A great quality you might think. Well yes, when exercised by someone with an appreciation for the fine line between refreshing candour and awful truths.

A few years back, upon meeting someone with a rather generous rear he turned to my mum and said, in a voice usually reserved for genuine emergencies, “oh no, fat bottom, fat bottom, fat bottom”

Luckily we side stepped that one by claiming it was just gibberish. “He’s learning disabled. He doesn’t know what he’s saying” we said unconvincingly as we pulled him away.

When he was a kid we were in the supermarket and a man passed wind. My brother loudly exclaimed “Oh yuck, that man has blowed off”. My mum told him not to say that. He replied at the top of his voice, with outraged incredulity “But he HAS blowed off, poo, it stinks”

We couldn’t really style that one out.

Related to honesty is his inability to internalise a thought and the truth coming out unintentionally. Our neighbours during my childhood were pretty unpleasant individuals. After we moved in they knocked especially to tell my parents that they hadn’t moved into their property to live next door to a disabled child.

Does anyone?

They said that my parents and I could address them, but that my brother was not to speak to them. My parents renegotiated these terms and proposed that none of us spoke to them. The problem is, if my brother sees you he speaks to you. He cannot be stopped. So after numerous incidents of my brother speaking to them whilst they angrily ignored him my mum sat him down and said “you are not to talk to Ted”. My brother asked why. Mum tried to break it down simply for him; “Because he’s nasty”. Accordingly thereafter, every single time we saw Ted my brother would shout “I am not meant to talk to you nasty old Ted”

No social constraints
My mum phoned him on his birthday this year to wish him well. He hates phones. Most probably doesn’t quite understand what the deal is. Someone’s disembodied voice emerging from a lump of plastic. He has a point, that’s just weird. Mum said happy birthday, he didn’t reply. She asked if he was having a nice day, he said a terse yes. Then she heard him hand the receiver back to his carer and say “take this away, I don’t want it”

That makes him sound unfeeling but he is actually a massive softie. One time when I phoned home and my mum tried to get him to say hello I just heard a load of banging and muffled sounds. Turns out he was trying to kiss me through the phone, perhaps assuming I must be in there somewhere. The differential between whether he is roughly discarding the receiver or warmly embracing it depends on where his mind is at the time, or how overloaded – in the old sensory department – he is feeling at that exact moment.

On Christmas Day for example, all of that wild oscillating between momentary excitement and long stretches of boredom often results in him cuddling up to me one minute and then telling me to fuck off the next. Don’t look at me. I didn’t teach him to swear. Which is a shame as that would have been great fun and a genuine honour.

Overly Literal
My brother is very literal so you have to be careful when giving him instructions, as his teacher once learned the hard way during a swimming trip.

He had his trunks on under his clothes, to make changing easier. However when they told him to go and get undressed he dutifully went to the changing room and took off everything, including his trunks. He wandered back out to the pool area stark naked except for his shoes and backpack weirdly. Maybe they don’t count as clothes to him. He then casually joined the line of kids to go swimming, like a boss.

Another time his tutor at MENCAP college was arranging a trip out one evening. They were awaiting the arrival of a minibus to collect them and as my brother was ready, the tutor suggested he look out for the bus. As the bus wasn’t there yet my brother assumed that the tutor meant he had to go and seek this bus wheresoever it might be. So he set off down a dark country lane alone until he found something resembling a bus; a bloke working on a van in his yard. He guessed that my brother was from the learning disability college and phoned them. The panicky manhunt was called off and my brother got collected from this man’s house by a police car, which he enjoyed immensely.

It’s also interesting to observe the way he processes language and understands words. When he was a kid he was quite a handful and we would often have to tell him to calm down or behave. “Behave Nicholas” my mum would say, and he would stop being naughty. So he understands the word behave right? Ish. When I recently told him to behave he snapped back at me “I AM being have!” So we’re talking more in code than anything I suppose, which is quite cool.

The unexpected
My brother’s lack of observance of norms often results in unexpected incidents.

When I was a teenager, and therefore really not up for public embarrassment of any nature, we were in the supermarket and passed an old lady in a wheelchair. Many of my brother’s friends at school were wheelchair bound and he pushed them around the playground at break time so his instinct, obviously, was to make off with this old woman.

We chased him around the aisles trying to stop him and retrieve her. When we finally caught up to him we apologised profusely to the old lady, who was actually delighted.

She said “I haven’t had a young man take me for a ride for a long time”

Lording it up
My brother can’t do much for himself; cooking, bathing, dressing. He needs 24 hour support to live. He’s kind of like a monarch, but with less taxpayer benefits. And indeed, he has copped some of the attitude too.

He will be telling us about the people at his placement, and when my mum says “Who’s that? One of your carers?” He will correct her and say “No, one of my staff”

Get you.

He goes to the toilet by himself but needs a bit of help here and there, like with wiping his bottom or pulling his pants back up properly – again, like a monarch, boom! (Is that treason? Sorry ma’am) - so sometimes he will walk out of the toilet with his trousers and pants round his ankles, point at me and bluntly say “sort my trousers out”

Yessir.

Upon first meeting people, carers or otherwise, he sees a chance to up the ante and will pretend he is even less able than he already is, usually asking them to feed him his dinner. When caught out, he drops the act immediately and picks up his fork like a pro. I probably just dropped him right in with Iain Duncan Smith there.

Speaking of food, he never used to know when to stop eating, or indeed what to eat. One morning when we were young, my mum woke up to the spectacle of my brother in the middle of the kitchen floor, surrounded by all of the food from the fridge and freezer. He had eaten some of everything. Even the lard.

Thankfully he has curbed his excesses in that department, but sometimes still slips. We had a roast dinner on his birthday and there were five Yorkshire Puddings left in a serving bowl. Before my mum had cleared the table he had managed to eat them all: one by one; systematically; no pauses for breath. At the end of this process he looked exhausted, and whispered to me in the most pathetic voice I have ever heard, “can I have an orange juice please?” Then a dramatic pause and an even more pathetic “please…please” When I left the room to get it he could be heard muttering “please, please…please mummy”

I shouldn’t laugh.

But then again I suppose I should, because as Matt and Trey have shown us in South Park, disabled people can and should be part of the group and the group laugh at each other’s idiosyncrasies.

Jimmy and Timmy deliver punchlines as well as sometimes being one themselves; the same as all of the boys in the show.

And that’s the thing. Worrying how to act around disabled people comes from a fear of creating offense. The trick is not to act at all. Be kind, and if something funny happens, laugh it up. It diffuses, demystifies and unites.

1 comment:

M Nelson said...

Made me laugh. I'd say, give him a hug from me but guess he wouldn't understand the concept. So a virtual hug for you. Do what you like with it.