Looking for Suffering in All the Wrong Places

People with disabilities inspire fear and disgust in the able-bodied because they seem to suggest the limits to this promise. But research shows a dramatic difference between non-disabled people’s perception of the quality of life of people with disabilities and the way people with disabilities describe themselves.

That’s a quote from an article that’s a bit longer, on HuffPo Religion, by Rachel Adams. Full article is here and it’s really worth a read. Thoughtful, perceptive, pulling no punches and clarifying, certainly for me, some elementary stuff that we sometimes need reminding about, especially in this big world of normals.

Derval O’Rourke: ordinary, everyday superwoman

It’s not every day you get to mix it up with one of the fastest women on the planet but that’s what Jacob was doing yesterday. Ok, she may be an Olympian, a world champion hurdler (Gold at the World Indoor Championships over 60 metres, among a whole stack of other honours) but Derval O’Rourke, Cork speedster extraordinaire, still found time to chat to our Jacob. Well, it’s not every day she gets to mix it up with one of the slickest guys on the planet, is it? Who can blame her?

Jacob and I were just taking a breather from the bowling lanes and the heady sugar intoxication of his brother Andrew’s 7th birthday party when Derval (yeah, we’re on first name basis) came over to shoot the breeze. When the rest of the posse came out she couldn’t wait to get her pic taken with them.

I hope all that proximity to such a bunch of cool guys doesn’t turn her head this close to the Olympics. You’ve got until July to clear your head, O’Rourke. Concentrate! And good luck, you legend! 🙂

Check out the party dudes! Jacob and his brothers plus some buddies from our street.

A lesson in love from Down syndrome, a lesson in emotional distance regarding ASD

Two special needs stories, related, but at such opposite ends of the spectrum of acceptance that it’s hard to think they were published within days of each other, one in The Irish Examiner and the other in The Irish Times.

Regarding the first. Some of my friends with kids diagnosed with autism are furious these days and nights over a particularly thoughtless and unlovely piece of writing in the Irish Examiner by a man called Tony Humphreys. I don’t blame them. It casts them as cold parents, whose emotional response to their kids’ difficulties actually makes everything worse. I won’t add to the debate, especially since so many of these people, who I know, admire and very much consider friends, have done a sterling job in throwing cold water on  his article, and questioning the stance of The Irish Examiner in publishing it.

You can find Sharon’s take here.

This is Lisa’s take on it.

Bock.

Siobhan O’Neill guest blogs about it on Suzy’s Maman Poulet.

There’s a ton more too, and it demonstrates just how important it is that if you have a reputation and a following, as Tony Humphreys does, it behoves you to have your information clinically accurate or else you will at the very least offend people.

And then there’s this, from today’s Irish Times, written by another Tony.

Tony Bates is founding director of Headstrong, The National Centre for Youth Mental Health. It couldn’t get much further from the coldness of that Humphreys analysis of where autie parents are going wrong. I’m not going to edit it, because I think it’s worth reading the entire piece. It gets a little sentimental (Scratch that, it gets a whole LOT sentimental!) but go with it. Because as the young man said, “Ah love. It’s what bonds us all.”

I think Mr Humphreys here probably knows that, and I hope he can recalibrate the part of his thinking that fails to recognise that most parents of kids with ASD do too.

A CURIOUS thing happened to me on the Luas recently. I had been standing since boarding the tram at Heuston, but when we reached the Jervis Street stop, a seat freed up. I sat down, grateful for the rest. I was happily window gazing, when I heard a loud voice from somewhere behind me asking for “a two euro piece”. I noticed a look of disgust on the face of a woman in a nearby seat, so I turned to see what was up.

A young man with Down syndrome was making his way through the packed carriage. His beautiful open face looked distressed. He persisted in asking everyone around him for two euro, mumbling that he needed it for the bus home. I dug a coin from my coat pocket, reached back and handed it to him. Job done; back to gazing out the window.

A moment or two later, this same young man sat down in the seat beside me and put his head in his hands. Apropos of nothing at all, he blurted: “How do you stop feelin’ annoyed with someone?” This guy clearly preferred to skip small talk.

I asked him what had him so annoyed, but he wasn’t happy to talk about it. “Just someone who did something a month ago that made me mad.” And then he repeated his question to me with an even greater sense of urgency: “How do you stop feeling mad at someone?”

I asked him what it’s like to walk around holding onto anger. He remained bent over, head in hands, distressed by a feeling that wouldn’t leave. And he said: “It hurts.”

We had an audience who were monitoring our conversation with interest. Maybe this boy wasn’t alone in walking around with unresolved anger. Maybe these onlookers were asking themselves the same question: “How do I let go of my anger?”

I wasn’t sure at all what to say to this young man, but he was growing on me by the minute. I offered him a lame cliché – “Maybe you need to forgive him” – but he saw through this immediately. “No,” he said. “Tried that, didn’t work.” That put me in my place.

I remembered something about people with Down syndrome: they are more connected to their heart than most of us. So I took a different tack and suggested: “Maybe you need to love him.” For the first time since he had sat down he lifted his head from his hands, sat up, and smiled. “Ah love,” he proclaimed loudly. “It’s what bonds us all.” And he threw his arms out in front of him.

He introduced himself to me and shook my hand. The woman who had been turning her eyes to heaven only moments before, leaned over and kindly offered him her best advice: “You need to pray for him too.” Another woman sitting behind her added: “You know, no matter how bad things might be for you, there is always someone else who feels even worse.”

The thought briefly crossed my mind that this second woman – whose face revealed her to be no stranger to pain – had probably tried to console herself with this truth many times.

My new friend responded warmly to each of them, thanked them and shook their hands. The tense atmosphere that had hung in the air vanished. There we now were, all of us, no longer strangers, crowded together at the door waiting to disembark, joking about keeping our balance as the tram curved around Busáras.

In the space of four Luas stops, something had shifted for each of us. We had been wary strangers at Jervis, but smiling friends when we reached Connolly. What had made the difference? Was it the inspired advice that we had given this young man? I suspect not.

I think it was more what he had done for us. His lack of pretence, his direct openness, had disarmed us. He had allowed us for a moment to step out from behind our separate selves and experience a simple but powerful connection with one another.

It occurred to me that this young man with his so-called disability, who made a carriage cringe, was freer and probably healthier than most of us that day. While we lived mostly in our heads, our hearts hidden behind a fear of disapproval, this young man lived from his heart. And even when it hurt, he didn’t try to hide it.

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It’s better to try than never to fly: introducing The Sky Stealers

Know a kid who likes to read?

Before Jacob came along, I wrote a book for children aged around 8-10 years old. It almost got published, but a deal fell through. I’m dusting it off and giving it one last chance to fly, unashamedly using Jacob’s blog here to let as many people as possible know.

The Sky Stealers

When AT, the wise owl who’s in charge of Air Traffic Control, is kidnapped, utter pandemonium breaks out across Forest Kingdom. All flights are grounded and the birds are scared, uncertain and increasingly angry.

Detective Jack Daw of Special Branch must find the missing AT, but he never expected to be calling on the help of shy, daydreaming schoolkid Christopher Sparrow. But then Christopher is no ordinary sparrow, as he – and we – soon find out! Magic, mystery and mayhem collide in this fabulous story, where nothing is as it seems and a new adventure is only ever a heartbeat away.

Fasten your seat belt and get ready for takeoff as we join Christopher, Detective Daw and a crazy cast of incredible characters on a high-flying escapade like no other: the Sky Stealers adventure is about to begin!

If I can’t interest a publisher, I’ll print it as an ebook.  I’ve set up a blog to find out what might be the most popular online way that young readers like to read.

So if you know any 8-10 year olds, boys or girls, nieces or nephews, kids or grandkids who love good, old-fashioned adventure stories, they may well enjoy the sample chapters at The Sky Stealers.

Please note: this isn’t a hard sell, it’s research to see what might be popular as a format (and to see if the story’s liked). If the researchers are keen to read on, I’ll forward the entire story gratis in return for them doing the very quick survey on the site. Probably as an unexciting PDF, but we’ll work that out if anyone wants to finish the story.

That’s all folks! Thanks for any help you can give.

Oh, and if you happen to have a print publisher in your pocket, say ‘I came across this a-MAZ-ing manuscript and I can’t beLIEVE it isn’t published. You should just snap it up, no need to even read it.’

That’d be grreat. 🙂

ttfn!

The polar bears do not live at the top of the world.

We’re hanging in space. Nobody knows which way up is. Back there in time, before you or I had to concern ourselves about it, somebody decided that it would be easier to standardise the setup. Make North the up, and South the down. They knew that they were bullshitting, of course, because they were the ones who decided to do it. But that bullshit was predicated on the reasonable assumption that order from chaos was a good thing. It would allow things to be arranged in some sort of sensible order. The 123 from Griffith Avenue to Inchicore would, by and large, have a timetable and stick to it. And sensible order is a good thing, so long as you don’t go asking too many awkward questions.

So as we hang here in the vastness of a space with no imaginable edges, the Arctic is at the top, the Antarctic is at the bottom, Florida is on the left and Bangalore is on the right. Greenwich is in the middle, because it was their game so they got to set the rules.

But bear in mind that it’s entirely arbitrary. Not only are we spinning in the unknowable mystery of space, which in itself is a truly wonderful thing, but we’re unquestioningly accepting somebody else’s version of what makes up, and what makes down.

This is us.

We go along with these arbitrary rules every single day of our lives. Society depends on them if it’s to work. From traffic signs to garbage collection, we need them to keep sentinel and guard us against chaos. And chaos, dear First World chums, is never as far away as our sheltered existence might lead us to believe.

But they’re not perfect, our rules. They’re made up. We need to go along with them to make them work, but that is not the same thing as accepting them blindly or adhering to their every command. The polar bears do not live at the top of the world. The penguins do not live at the bottom. We choose to decree that they do. For their part they do not give a permafrosted shit one way or the other.

Things are as we perceive them to be. It’s a lesson I’ve learned over the four years since the great universal being allowed Jacob to live with us. There is no slow. There is your speed, and my speed, and his speed. And the person who is certain of too many things, I’ve stopped envying them a long time ago. I’m blessed to have a child like Jacob, whose make-up is different to mine in some respects, but who nonetheless has made me look at the order of things, question it, consider its merits, argue its faults and never, ever see it the same way again. I can’t be thankful enough for that.

 

A crazy house in San Francisco. Or is it? Click for reality.