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.

The perfect gift

I thought of the perfect gift for you this year. I thought I might give you time. What could be more precious? Better yet, I had loads of it. ‘There’s no present like the time, so that is what I’ll do’, I vowed to myself. ‘I’ll do that right away, mark it in the diary for next Tuesday.’

But time’s a passing thing, and Tuesday came and went. So did March, and July and September, and 2010 and 11 too. I spent so much of it, in truth, that before I noticed, it had all flown. I didn’t have time to be concerned though. You were four now, and the things I’d written about you, just weeks earlier when you were two, were still barely dry on the page. I was sure I’d had time to spare, an endless supply, but each tick of the clock was a grain of sand, crashing to the bottom of an hourglass that nobody tells you is there.

I frittered it away, too many evenings, too many days, on the things we have to do to get to the things we want to do. Time is money, but money takes time, and between you and me it took a whole lot of mine.

I can see it now, great big heaps of it, all in the rear view mirror. Up ahead there’s fog, and I’ve no way of knowing how much time there is. More for you than for me, I suspect, and I rejoice in that, although it makes me uneasy too. Your knack of slowing things down, of making me look at things that nobody else sees, maybe next year I’ll learn how to do that.

Next year I’ll give you more time. Next year I’ll spend it on you.

Roses are blue. It's time to smell them.

The Assassination of Down Syndrome by the Coward Ricky Gervais

‘Monged up’ Gervais.

‘When I use a word,’ Ricky Gervais said, in rather a scornful tone,
‘it means just what I choose it to mean — neither more nor less.’

So stand up, you, child with intellectual disability and mud on your hands and tears on your dirty face, and do stop making a fuss. Mr Gervais clearly didn’t mean you. And if those other children pushed you to the ground and shouted Mong! at you, it’s hardly the fault of one of the most successful English entertainers of the last fifteen years, is it? No it is not.

Because when he calls people monglets it’s ironic! This is a man with a stellar career. He’s worked with Samuel L Jackson, for God’s sake! Next you’ll be saying that selling millions of box sets of The Office gives Mr Gervais some sort of sway with the impressionable public who, let us all be crystal clear here, are quite capable of deciding who’s a mong and who’s a retard or a spazz, thanks. And anyway, the other kids were at least including you in their activities, no?

Honestly. There’s no pleasing some people.

Yes. Get over it. You don’t see all the gays standing around with dull looks of incomprehension, wondering what’s going on and why they’re being victimised, do you? And it’s not because they can’t go on about it. Christ, the gays LOVE to talk! Nobody can out-talk Graham Norton! But they know it’s not all about them. No homo isn’t saying, like, no to homosexuality. It’s an in-joke, see.

Here we go. I can tell I’m going to have to explain every single thing in this one. The gays are getting on with it. Why can’t you mongs get that? And no, I don’t mean people with Down syndrome. I have friends, some of my best friends, who have Down syndrome. Plus too, this isn’t some bandwagon Mr Gervais has suddenly jumped on. He mentioned mong in his Science DVD, and he even explained there that he doesn’t mean Down’s Syndrome. See?

Really you should be grateful. The more the great Mr Gervais popularises the word, the less power it will have in precisely this situation. He’s doing you a FAVOUR, Down syndrome people. If you weren’t a- if only you hadn’t an intellectual disability you might’ve saved everybody a lot of trouble by figuring that out for yourself.

As it is, the PC brigade has come running. Typical. Bloody Richard Herring. Clueless tool. You lot just don’t get that everyone does it. It’s NOTHING to do with Down syndrome. And the extremist idiot cretins who keep mentioning suicide and abuse of people who have intellectual disability, why do they insist on coming up with this rubbish and then bringing it back to someone who has a huge following and is very successful and has worked with Larry frigging David, ffs? How could the two be related AT ALL?

Mr Gervais is shining a spotlight on the ridiculousness of this PC nonsense. He only ever says mongol to explain that mong isn’t related to mongol, which is a word he would never use. Besides, if for one second anyone could show a link to the popularising of abusive hate language and abuse suffered by people with disability would instantly change things.

If you were to say, just go with us here for a minute of hypothetical indulgence, suppose you were to say that South Wales Police figures show there were 379 reported disability hate crimes in 2010/11, an increase of 214 on the the previous year, well that might be something. But it’s not going to happen because clearly it’s UNrelated.

And besides, it’s Wales.

Ricky Gervais is straight down the line. He has shown respect for nobody, equally, and you’d do well to bear that in mind. He’s torn strips off 84 year old Hugh Hefner. He’s ripped into Hollywood stars. He’s lampooned the holocaust. He’s worked with Kate Winslet, for the love of Christ. What sort of unequal signal would it send out if he started treating people with intellectual disability as if they were somehow different?

Not his style. He is honest. If you can’t take that, do as so many of his loyal fans suggest. Don’t listen. How can it hurt if you just change channels? You won’t have to hear what he’s saying, or what his millions and millions of catch-phrase loving fans will be repeating. Simple, simpleton.


Why SHOULD he apologise? He’s got 450, 000 followers on Twitter alone, and they understand exactly what his high ideals are on this matter. This is a man who has worked with Robert de Niro. If Mr Gervais says Susan Boyle looks like a mong well then I’m at a loss to understand how you could take that up wrong. She just needed a makeover and a bit of a do. Crikey, I hope I don’t get stuck in a lift with you any time soon because it already sounds like your jokes will be TERRIBLE.

But still, the streets are lined with the haters, jealous of the Gervais Midas ways with words. No matter. As the man himself has said, ‘two mongs don’t make a right’ (please don’t make an association there with Down syndrome: there clearly is none). It’s easy to forget that he didn’t have to have a character in a wheelchair in The Office. But he did it. No word about that now though, oh no, Nicky Clark. Now it’s all ‘Ooh you can’t say that’, and ‘What would Richard Herring say?’ Who cares what Richard Herring would say? I mean, look at what he says on his blog:

I am not offended by Ricky “reclaiming” the word “mong” (though I don’t think it’s his position to attempt this), I just think it’s a bit odd and pathetic to be doing what he’s doing and I don’t agree that the word is harmless. But no one is trying to ban anything – I have used the word “mong” in this blog (oh, I’ve done it again). And as I’ve also said there’s loads of comedy in disability and our attitudes towards it. But ironically enough, by Ricky’s 300,000+ followers taking his lead and using the word against people (including me today) they are demonstrating why it is misguided of him to use the word in the first place. I don’t think he has found a way to make it mean something different, but his fans definitely haven’t (here’s the latest example – “Who the hell is Richard Herring? I’d call him a mong, but I don’t want to insult mongs!! :-)” – is that man using “mong” to mean something other than disabled? Don’t think so). And the term is suddenly proliferating, which is making life uncomfortable for the disabled people I have been in contact with. Which seems a shame. I guess having done these two Objective shows on the golliwog and the wheelchair has made me more acutely aware of how these names affect people.

What. A. Mong. (No disablist.) Richard ‘Softie’ Herring has quite clearly never co-starred with Orlando Bloom in ANYthing. Also, Ricky loves his fans. Really loves us. How could you, whining on and on about being PC, possibly hope to understand real love? Have YOU worked with Ben Stiller?

I did not think so.

Update: Gervais replies to Nicky Clark following her emotional reaction on a BBC radio show. I can’t hear it in Ireland, unfortunately, but maybe you can. It’s here.

And thanks for a link to a more reasoned response, from comedian Robin Ince here, thank you Moloch50.

SNAs: sacrificing the neuro-atypical

Disclaimer: I am not in a good mood with the people driving the bus. If you’d prefer sunshine right now, maybe come back another time.

It’s a big, scary world when you’re a little person. Things just are. They’ve always been. They don’t change. Big people know best and must be trusted. Daddy’s hand and mummy’s arms are the safest places in the world.

Occupy Wall Street for as long as you like. Just don’t get cocky.

If you’re lucky, you get to hold on to that trust for a few years. You get your disappointments handed to you in bearable increments. You might even get to sensible, middle-classed middle age before you get the shock of being arrested for peaceful, legal protest in the land of the free. in your home town, as Naomi Wolf was in New York last night. ‘…if DHS [the Department of Homeland Security] now has powers to simply take over a New York City street because of an arrest for peaceable conduct by a middle-aged writer in an evening gown, we have entered a stage of the closing of America, which is a serious departure from our days as a free republic.’ Lucky you, Naomi, in one bitter sense, that you got quite so long out of the illusion. Don’t worry. You’re certainly not alone. We’re through the looking glass with you.

Kicking our SNAs out with the baby

Closer to home Anonymous Writer, posting on The Anti Room, is under no illusion as to what his or her son is losing now that the IMF, ECB and EU are telling us in Ireland what to do but not how to do it. The how we’ve been figuring out ourselves. Special Needs Assistants are being sacrificed, and the needs of the most vulnerable among us are being stripped to show what they are: expendable fringe elements. The autism, dyspraxia, severe receptive language issues, below-average IQ, motor issues and assorted other issues that Anonymous’s 15-year old son must live with, and take the scorn of his classmates for, are first on the forgettable list when it comes to squaring our debt with our external corporate masters. In his parent’s words,

But credit where it’s due. Well done Timothy Geithner, Goldman Sachs, Christine Lagarde, Jean-Claude Trichet and all the rest. You’ve taught our son a good lesson: divide and rule is a tried and trusted strategy. It allows you to slink out the door with all the world’s wealth while ever-willing, ingratiating foot-soldiers at the coalface get on with finishing your dirty work for you. (Funny how those foot soldiers are never in short supply, isn’t it?)

Anonymous has no doubt been keenly aware of the imbalance in life for quite some time. Speaking of foot soldiers, it doesn’t exactly give me a warm glow inside to know that our Finance Minister Michael Noonan, a man in his seventies, can mug for the cameras today and grin like a well patted monkey and tell us that the overlords will be pleased to announce tomorrow that we’re doing ever so well in paying them huge sums of money, while back home our damaged kids, and the flimsy routes through life that we’ve been trying to construct for them, will somehow have to make do, because frankly they, like our old and our sick, are lessers. This is our Serengeti migration, folks, and devil take the hindmost. The government is doing well under difficult circumstances and we all have to make sacrifices and things are improving and blah blah bullshit. It won’t save the weakest ones. And if we’re to reach above ourselves for even the merest second, we’ll do it by holding out our hand to the weakest ones. And yes I’m biased, and yes I feel it all more keenly because I have a son with special needs, but the feeling of aloneness in the face of what you once simply trusted is no different that the lurching realisation that Naomi Wolf felt in her marrow yesterday when her police came to take her away for doing no wrong.

…unfortunately, my partner and I became exhibit A in a process that I have been warning Americans about since 2007: first they come for the “other” – the “terrorist”, the brown person, the Muslim, the outsider; then they come for you – while you are standing on a sidewalk in evening dress, obeying the law.

So no, the trust is no more. The realisation that you have to fight for it all stays with you. And it makes you tired. You get inspiration and you find friends and you have brief moments when you can stop thinking about keeping the roof secure, whatever about the rattling windows, but what you do not want, what you absolutely cannot tolerate, is wanton cruelty from respected people in privileged positions. But that’s in the next post.

A girl speaks out for her brother about ‘retarded’

Thanks Regan. Your brother and you are clearly a wonderful pair of people. And thanks to Max’s mum for tweeting the link. Without whom etc. 🙂