What My Uncle Has Taught Me About Having an Intellectual Disability

It's hard to imagine it now, but 20 years ago, my ​intellectually-disabled uncle used to drink. He shouldn't have, really, but he did, in the pubs around town and in the small council house he shared with my grandmother. He spent his days in a sheltered workshop – now viewed as exploitative, but then somewhere he and his colleagues could earn some money to spend on things that made them feel less excluded.

For my uncle, one of these things was drinking beer, a pastime my grandmother encouraged until, one night in the mid-90s, he drank too much, kicked a pole and broke his toe.

My uncle's IQ is between 35 and 49, meaning he has "moderate" intellectual disability; meaning – until pretty recently – it was considered perfectly acceptable to call him "retarded". The symptoms of intellectual disability are myriad and can include not just an inability to read and write, but also difficulty with memory, problem solving and learning social rules. The cause is unknown in up to 50 percent of cases (this applies to my uncle), with the three biggest known causes being Down's syndrome, ​velocardiofacial syndrome and ​foetal alcohol syndrome.

Around  ​3 percent of the world's population have intellectual disability, with about 90 percent of cases described as "mild", a slightly less debilitating form than my uncle's. Those in this bracket can learn skills which enable them to lead fully-employed, independent lives, including reading and writing to the level of a typical 10-year-old. However, as those with moderate intellectual disability can't look after themselves, a full-time carer is required.

In 2010, a survey revealed that learning-disabled people perceive themselves to be the most discriminated-against group in Britain, with 51 percent of those questioned feeling this way, compared to 44 percent of gay people and 40 percent of ethnic minorities. In 2012, another poll revealed that 46 percent of disabled people feel like attitudes towards them are getting even worse, with 84 percent of this group blaming the media's constant coverage of "benefit scroungers".

Indeed, though the days of openly calling disabled people "retarded" are mostly over, their consequences aren't insignificant. I'm 27 and I grew up around my uncle. Although that doesn't make me an authority by any stretch of the imagination, I can certainly say that when he meets someone he doesn't know, they normally more or less ignore him.

I don't think this is to do with hostility. Rather, most people are kind of afraid of him, worried he's going to throw a fit like – apparently – every mentally-disabled person does. Either that, or they don't believe he's worth their time, seeing him as, essentially, an opinion-less child.

Films don't help. In Hollywood, mentally-disabled people are often given skills they ordinarily wouldn't possess, presumably to alleviate some perceived sense of guilt in the audience. Forrest Gump and Rain Man's apparent superpowers let us believe, if only subconsciously, 'Well, at least Dustin Hoffman can count cards, and at least Tom Hanks can philosophise about chocolate and play professional sports.'

So we leave the cinema not with a complex representation of disabled people, but with the feeling they're operating on an alien level of freakish trickery. They're among us but not of us. We could try to help, but would we even be able?

At the age of 40, my uncle decided he didn't want to work any more. All his life, because of bad resources, he'd been lumped in with people of every mental disability – low-functioning autism sufferers, for example, prone to fits of rage, which rattled him greatly – and he finally grew sick of it. So my nan relented and let him stay at home. Consciously or subconsciously, she must have at least suspected the enormity of what she was getting herself into, which was a kind of prison – one that had previously opened its doors for six hours a day, but now, unless my mum was around, stayed basically closed.

Since he left work, he wakes up every morning at 6, banging doors and flushing toilets until my nan wakes up. Then he has his dinner at 12 (potatoes and meat), followed by his tea at 3:30 (often a toasted sandwich). About ten years ago he contracted a stomach virus with lots of puking, so my nan – not really knowing the cause, but knowing puking freaked him the fuck out – took a load of food off the menu.

If things weren't hard enough, the poor woman makes them even harder by forcing slightly pointless rules like these on the situation. He can't eat this, he can't eat that; he can't do this, he can't do that. Meanwhile, when she's not around, he'll do most of this stuff anyway.

I love my grandmother, but sometimes I wonder if there isn't a touch of masochism in how strenuously she controls things. Undoubtedly, she thought my mum would be around longer. My mother was the only one, other than her, who could placate him instantly. He was very protective of my mother and so, for that, I loved him more like the older brother I never had than an uncle. It was agreed upon, then, that when my grandmother died my mum would look after him, and this pleased everyone. However, when my mother died at 40, everything changed.

The night it happened – in 2007 – we were worried about how he'd take it, but when my grandmother told him he just looked at her and said, "Don't worry, ma, now I'll look after you."

Who knows where it came from, but that night – while our whole world was falling apart – he became strong.

One fear I have, usually unspoken, is that he'll get a serious illness himself, one that'll require him to go to a ton of doctors and endure a lot of pain, which, at 55, is at least a possibility for someone with such a sedentary lifestyle. And no matter how hard it currently is for my nan, she'd fall to pieces without him.

With my mum dead, the rest of my family kind of avoids him. They have their own lives and can't really be expected to go above and beyond the call, but naturally my nan's anxiety about where he'll end up when she dies now seems quite high. Though her other son has agreed to look after him in principal, I worry that he's been such a peripheral figure in all our lives that he can't really know who my uncle is any more, nor what taking care of him entails. He was around the most back when my uncle used to drink and go to work, and I suspect he thinks a return to those days is eminently possible.

Although I've put in a good amount of time overall, I rarely see him these days. I'm 27 – no one's looking at me to do much of anything. Yet, I still feel like, when my grandmother dies, his care should be my responsibility. I don't want it to be, but because I'm my mother's only child, I feel part of some unbreakable chain.

But am I even capable of looking after him? Could I give up whatever life I have by then to take on all that routine and worry, where every dream is crushed by his needs and – unless I win the lottery – the limitations of government benefits?

Considering I'd rather write an article than phone or visit, probably not. But surely I'm no different than most people. The truth is, to look after someone in such an extraordinary way requires an extraordinary person, which I'm not, and which my nan, undoubtedly, is.

Over the years, my family have all been frustrated with how strenuously my nan controls his life. But, in fairness, what else could she have done except exactly what she did? Having had relatively little help from us, she fought the insufferable days and the anxiety the only way she knew how: by creating a constant whirlwind of controlling activity.

I don't want to say she fears death. However, she must sometimes worry that – when it comes – because of the person she loves the most, much of her life will have gone unlived.

But looking back isn't the answer. Some stuff has changed for the better, some stuff is worse. Nevertheless, for him as much as anyone, there's no simple solution to something so complicated as life, no matter how much it sometimes seems like there is from the outside looking in.

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The public have changed in line with my uncle. Not only has their knowledge of intellectual disability improved, so has their way of seeing sufferers. Mind you, it still isn't where it needs to be, and probably never will be, what with forces like Hollywood and our egos conspiring against it.

Certainly it's understandable why films can convince us that mentally-disabled people don't need our help. Those who care the most about any issue are those personally affected by it, and in a world rife with hunger, war and disease – not to mention making rent – it's difficult to give two fucks about something so relatively trivial when, unlike my grandmother, we don't see it every day.

Unless we're totally willing to give up on the idea of society, however, surely we must do better. I'm not talking about donating money (though, of course that'd be great), rather – from growing up around my uncle – I suspect that what he and other intellectually-disabled people would really like (and this is a generalisation I am noticing myself make) is more inclusion, to feel less like passengers in other people's lives and not go so unnoticed – to have more of a sense of belonging and not be such brushed-aside pariahs.

Of course, I'm writing this to myself as much as anyone – calling out my fear of a man who, despite his limitations, did kind of raise me – because I know better than most that going the extra mile not only means a lot but is so fucking easy. Obviously I'm not pretending that saying hello or asking anyone how they are (or, in my case, phoning or visiting) is going to change lives, but it is going to make those lives more enjoyable, and what could be better than that?

All of us need inclusion. Nobody wants to be alone, and regardless of how little some of us understand "alone" on a conceptual level, it's something that transcends disability. It's primal.

Though we're quick to linger on our differences, inflating them until they create a division, it's ultimately this thing we need on a guttural level (each other) that – more than anything – binds us all together in this quivering hunk of shit called humanity.

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​@0jnolan