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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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.

What’s so funny about Sarah Palin’s vagina?

It’s easy to be shocking. Some people make a life’s habit of it. We’re taught in my business (advertising) that if you shock people, you’d better have a good, justifiable reason. If you don’t, you lose your potential customers’ trust pretty quickly.

The woman who produced the line about the retarded things produced by Sarah Palin's vagina

The headline applies to an American comedian called Whitney Cummings. (I must thank Kimberly for pointing out the link to me. Sorry for omitting it on first draft) Catholic upbringing, magna cum laude graduate from the University of Pennsylvania. On the face of it, a young woman with intelligence. Her own network show on NBC. (For those of us outside the US, that translates as Quite A Big Deal.) Beautiful too, paying her way through college with modelling jobs. Success, fame and all that stuff you get when you’re part of the MTV generation.

That’s the bit that kicks me in the nuts. All this going for her, and she can ‘jokingly’ tell movie director Quentin Tarantino that he’s ‘produced more retarded things than Sarah Palin’s vagina.’

Did you think this was a joke without victims, other than Tarantino, Whitney? Truly?

The Roast, as it’s called, is an American convention where terribly successful and famous people are publicly shredded, mocked and humiliated by their friends, with their compliance, in the name of comedy and entertainment. And flawed as that sounds, the usually rude results, if you want to YouTube any, can be quite hilarious.

Not the beautiful Ms Cummings’ contribution however. It happened towards the end of 2010 at a roast for Tarantino. Personally, I feel that Sarah Palin can expect to get harpoons thrown at her. She’s a public figure with her own politics in a nation that’s sharply divided on left/right grounds. It will happen. But what should not be allowed to go unanswered is the deliberate targetting of her son – and her whole family, essentially – as if the hollow laughter was somehow a right that free speech confers on idiots like Whitney Cummings. There is a price, you cheap-laughs-barrel-scraper. For you it’s a dipping in the minds of decent people. Not prudes or unsophisticated types. Just decent people who stand a bit closer to fairness than you do, clearly.

For our special needs family and friends, it’s inevitably another target painted on their backs that makes them somehow, ridiculously, fair game for the spite and cruelty of others, you beautiful, senseless fool. And I hope to God you’re a senseless fool, because otherwise you’re a cruel and intelligent doll who sees no merit in our wonderful children, other than as a handy punchline in a mockery of all that drags us, even one miserable half inch, up from the dirt where conscience or respect or feeling for our fellow creatures plays no part. This life is already hard enough without your outstandingly ill-conceived dig at people who, on the face of it, are less fortunate than you.

But you know what, Whitney? On the face of it means nothing. On the face of it means Whatever Happened To Baby Jane and Sunset Boulevard and every other intelligent analysis of skin-deep shallowness. You have no concept of the love those ‘retarded things’ bring to the people whose lives are graced by them. To me Sarah Palin lives an unimaginably alien life, except for the bit where Trig puts his arms around her neck and loves her. I know that. And it is clear as thundering fuck that you do not.

Down syndrome: an inconvenient truth

Here is a reference for those damn statistics.
Here is some information on the music, by a group called The Unthanks.

And a thank you never made often enough to the McGivney family, for being who you are and keeping things real.

Ellen, Twitter and that retard word.

Ellen is Max’s mother and she wrote an absolutely great post about interactions on Twitter where the word retard comes up with regrettable frequency. It’s very carefully reasoned, but nonetheless it kicked off predictably enormous howls of righteous indignation and it’s-my-freedom-of-speech/this-is-pc-gone-mad type recriminations. And some thoughtfully argued counterpoints too, plus some illuminated new viewpoints.

Anyway, I sent it on its way via my own Twitter account. For those of you who don’t know Twitter so well, it’s like a very slimmed down Facebook. For those of us who use it, it’s more like the crack cocaine to Facebook’s chicken soup, if you will. There are over 1,700 people following me on Twitter. Sizeable, but not enormous. Interestingly, what happened is that my message about Ellen’s post, once I’d set it on its way, was retweeted – or re-sent – by over a hundred other people. So alongside my potential 1,700 followers, all the followers of another 116 people would also have potentially seen this great piece about the use of the word retard. Twitter is a very powerful medium for this kind of message spread, and that’s one reason why I like it so much.

There is a site (again, for Twitter nerds like me) which maps the use of the R word in real time, and allows you to challenge the people using it. Not sure how much I’d use it myself, but it’s interesting to see the tools that are available now to promote positivity in this way. It’s called The Social Challenge.

Go check out Ellen’s post. It’s brave and rollercoastery and worth it.