Behold!

Mr Mike Burnhill

It’s one of fourteen in Mencap’s Snap competition. There were 1,100 entries two years ago. Stumbled across them tonight. Fourteen crackers on display at The Guardian here. Go ahead and knock yourselves out.

Aimee Mullins has 24 legs: Now what disability would that be?

First of all, go to college online by visiting the TED talks. Riveting talks by remarkable people, free to the world. Their words. All sorts of topics, all types of people, all walks of life, all corners of the globe. Ideas worth spreading, they call the concept. Hell yes. And when you see Aimee Mullins you better bet they’re worth spreading. She actually pushed me that bit further when I saw this vid, into the Am I actually a bit envious category. Watch, and listen for the ‘That’s not fair’ bit. I love this.

Thanks to my very good friend Karen Ardiff for bringing this to my attention. 🙂

And one more thing! If by chance you are in the Leinster region, are free this Saturday 21st, and can help with some focus group research to help newbie Ds parents, then Down Syndrome Centre could do with your help. Get in touch with Sheila.

On Saturday 21st November Down Syndrome Centre, with the generous support of Price Waterhouse Coopers, will be organising a focus group to establish recommendations/guidelines that parents of children with Down syndrome will make to support new parents with their child’s development in their first year. This will take place in PWC’s new offices on Spencer Dock in the IFSC from 9.30am to 1.00pm.

We hope this information will form a ‘roadmap’ of sorts which will greatly assist new parents in knowing what they should be doing/feeling etc in the first months of their new baby’s life.

Two comments

luggage-carousel1

I’ll be dealing with my own bags in the terminal for the rest of my life. Almost everybody else will be doing something similar, I reckon. And then there will be some sad cases that got mixed up somewhere along the line, trundling around, unloved and unwanted. There will be others full of bad secrets and illegal contraband. Most will just have the crisply ironed hopes of a good time ahead or the crumpled memories of one just gone. Either way, whatever the baggage status, everybody’s journey will be just theirs alone, no matter how much we share. Consider the breadth of understanding that exists between the two quotes below.

The first is  from my good friend Elbog, about his daughter Emma, a force of nature (and I do not mean that in the clichéd smashes-trees-and-tears-down-powerlines way) who is showing him himself every day. Nine years of human learning distilled into twenty words of truth. I want to embarrass this man by telling him how wonderful he is, despite his obvious failings (He’s American AND from the West Coast), but I will resist. If you do visit his thought-provoking blog, the perfectly named Bittersweet, please go singly. He’s skittish with crowds. About Emma:

She requires you to deal with who you are; you cannot pretend, pretense means nothing. There is no denial available.

The second arrived two days ago to this blog’s comment box. Just a foolish comment from an idiot. But it’s good to know that we all are different, and while there’s a lot we share, there’s much on this journey that is ours alone. My instinct was to bin it (and I haven’t published the uglier part of it) but what would I learn from that?

Calling a ‘tard a ‘tard is the most harmless insult one can commit, after all, they’re generally so stupid as to be incapable of focusing on the same though for more than a few seconds, so it’s not like they’re even going to remember being insulted 30 seconds down the road.

This world needs crackpots

Thank you most humbly, His Girl Friday, for posting this. It’s great to see your collection of quiet wisdom back in full flow.

A Chinese woman had two large pots, each hung on the ends of a pole which she carried across her neck. One of the pots had a crack in it while the other pot was perfect and always delivered a full portion of water. At the end of the long walks from the stream to the house, the cracked pot arrived only half full.
For a full two years this went on daily, with the woman bringing home only one and a half pots of water. Of course, the perfect pot was proud of its accomplishments. But the poor cracked pot was ashamed of its own imperfection, and miserable that it could only do half of what it had been made to do.chinesewatercarrier
After two years of what it perceived to be bitter failure, it spoke to the woman one day by the stream.
‘I am ashamed of myself, because this crack in my side causes water to leak out all the way back to your house.’
The old woman smiled, ‘Did you notice that there are flowers on your side of the path, but not on the other pot’s side? ‘That’s because I have always known about your flaw, so I planted flower seeds on your side of the path, and every day while we walk back, you water them. For two years I have been able to pick these beautiful flowers to decorate the table. Without you being just the way you are, there would not be this beauty to grace the house.’

Each of us has our own unique flaw. But it’s the cracks and flaws we each have that make our lives together so very interesting and rewarding. You’ve just got to take each person for what they are and look for the good in them.

Do drop in to see His Girl Friday. She’s always got the kettle on for highway stragglers.

Introducing Joe Barnick

It’s easy to get defeatist when you’re surrounded by negativity. It’s easy to add to the heap. But every so often you get to see a video of a guy who likes to order ingredients for Japanese recipes off the internet and you suddenly think to yourself that maybe Satchmo was right. It is wonderful.

Sunday’s papers, Tuesday’s Child and Wednesday’s sign language course.

Everyone’s away at a six year old friend’s sugar-fuelled birthday party across town. So I’ve just cheekily scoffed five Fig Rolls. I know it’s Lent and all, but Fig Rolls aren’t properly biscuits, are they? Not really. They’re more of a kind of healthy mulch food, a sort of veggie energy bar like you might find in a farmers’ market, where teensie women swing by in Range Rovers, wearing multicoloured wellies and carrying hessian bags with celery stalks peeking out. I mightn’t make it through this post without them. (The Fig Rolls, not the teensie women.) They’re possibly tax deductable. Must check.

What a beauty

Over the course of my Figfest, I read an article on journalist Kathy Evans, who has just published Tuesday’s Child, her story documenting the birth of her third daughter Caoimhe. It charts her journey, the shock, anger and grief she felt along the way, and the acceptance she now enjoys. Caoimhe (pronounced Kee-va, non-Celts) is five and a half and quite a little stunner. I grabbed this quote from one of the articles in the Irish Independent. It certainly sang to me.

Since Caoimhe’s birth I am gentler, on myself and on other people. Her vulnerability has taught me compassion; her learning difficulties have given me patience. If I slow down enough I can share her joy at things which I long ago stopped noticing. The way the sun melts at bedtime still surprises and delights her; watching the stars poke holes in the sky together elicits shouts of delight and not all of them hers.

I hope Caoimhe continues to teach the Evans clan such wondrous things.

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Meanwhile, the fight against prejudice goes on elsewhere. I’m always encouraged to know that some of the people in the trenches actually have a good grasp on what they’re talking about. Dominic Lawson in The Sunday Times sure as hell does. I don’t uniformly agree with him, but I always respect him, and when he writes about those ‘suffering’ with Down syndrome, he nails it on the head. He writes with insight: one of his own children has Ds. Last weekend he spoke about the death from cerebral palsy of Ivan Cameron, the six year old son of British Tory David Cameron.

…if the Tory leader’s exposure of his son was part of a campaign, it was a campaign about something much more important than politics. The message was that he and his wife were not ashamed or embarrassed to have a child with such profound disabilities – and, by extension, neither should anyone else be, in the same situation.

I certainly respect the Camerons for behaving as normally as possible in the abnormal situation they find themselves in. Media glare, I mean. I sympathise too for their horrible loss.

As to Lawson’s point above, we’re never out of the woods, not by a long way, when it comes to external prejudice. I’ve made my personal peace with that, and will fight when a loud enough loudmouth needs a smackdown. I’m not even going to try to be on constant battle alert, but when the opportunity to shout out some positivity comes along, I’ll try to jump in there too. People like Kathy and Dominic, as journalists, are in a good position to do this. I’m thankful that they are actively helping anyone who is ‘afflicted’ with this ‘challenging’ ‘disease’ by just being normal. It certainly adds to my reservoir of faith.

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lamhHere’s something else that helps: Lámh. What what, you ask? Sign language, I reply. Myself and Jacob’s Mammy started a three week course last Wednesday at St Michael’s House. Lámh (means hand, non-Celts, and rhymes with mauve, kind of) has a 600-word sign vocabulary and is the standard language used across Ireland for people with learning difficulties. Being in a room with 30 others who want to give their kids every possible break that they can is a very warm and fuzzy place to be. Can’t wait for next week.

Of course we need those breaks now more than ever, with the scythe that’s swinging its way through services for those with disability generally. Like it or not, we’re a marginal group, and people on the margins have to shout louder in order not to be left behind. The lack of proper speech therapy now in SMH is a case in point. It’s a basic need for anyone with a young child with Down syndrome. It has far-reaching implications for them. I’ll be coming back to this point, but it’s not something that we can afford to ignore.

Right. I’m worn out after that rant. Possible time for another fig roll…


Goodnight, Irene, goodnight.

I’m tired. I’m working a lot, and when I’m not I’m thinking about it. So I thought I’d pull a lazy one tonight and just post somebody else’s content. Patricia E Bauer always has plenty of news, thought I, and she won’t miss it if I pinch some. And thus I got introduced to Irene.

I shouldn’t moan about tiredness.

When her daughter was born with Down syndrome in 1942, doctors told Irene to institutionalize her because she was hopelessly handicapped and probably wouldn’t live more than a few years.

Mrs. Henry disregarded their advice, and instead took her daughter home and helped to start a school for children with intellectual disabilities.

Putting mentally handicapped children in an institution, rather than having them grow up at home, was a common practice when Mrs. Henry gave birth to her daughter, Judith, but she was having none of it, her son Albert said.

“She’s my daughter, and I’ll take care of her,” she told the doctor, according to her son.

Daughter Judith Martin lived with her parents until 1991, when she died at age 50. Mrs. Henry’s husband died the same year.

On the second to last day of 2008, Irene C. Henry died in Chicago aged 91.

I do not thank the people who came before me nearly enough. They didn’t enjoy anything like the same level of acceptance or support that we as parents and grandparents do, and going up against the Wisdom of the Day was a lot tougher for Irene. But that determination gave Judith a full life with her parents for fifty years.

I owe you, Irene. Sleep peacefully with them.