down's with the kids

Friday, 11 April 2014

Luis Suarez and the rewritten headline

After the success of the "happy" video for World DS Day, I pledged to a friend, on facebook, that the next time I saw a "suffers from" headline I'd be onto it. I didn't have to wait long. The original title of an article said: "Luis Suarez stops to play football with Down's Syndrome sufferer". But I pointed out that the boy probably wasn't suffering at that point. I actually clicked on the email that goes to "corrections and clarifications". Well, they were fantastic and within minutes had rewritten the title. Here it is. 

This is important because the article, on an American site, went on to be syndicated on many other news/sports sites. Luis Suarez needs all the good publicity he can get, and this was a human-interest story that's not usually associated with him. So it has 'legs' as a story.

Therefore, it was good to nip this in the bud. 

The editor did confirm that they were using journalese, but had the grace and emotional intelligence to immediately understand what I was saying. So, if you get one organisation to nudge their 'style guide', that's good. 

Why so important? Aren't people with DS referred to this way every day.....and isn't it usually much worse? 

With words, I'm usually less bothered than some people....usually. It's just that, in the week where people with Down's were shown to be...oh so normal, it jarred. And I know that the use of words is very important to many people. Just tell someone who uses a wheelchair that they're 'wheelchair-bound' and expect an animated response. 

It's good to think that we can change attitudes by changing some words. (Of course there's so much else to do). Because the title of the article is now much more empowering, less patronising, and, dare I say it, dynamite for Luis Suarez's PR machine. 

Well done to the Bleacher Report, who runs this site. One small victory. 

Saturday, 5 April 2014

'Suffering' from Down's?


The next time someone throws that old cliche your way, show them this.

Saturday, 15 March 2014

Dance champions

Stan and Nicholas after they stormed the show....

A former day trader has helped Stan and his friends turn a placid audience into a seething crowd of appreciative whoopers and hollerers. 

Redfoo makes up half of the electro house duo LMFAO, and it's their song that Stan's school danced to in the battle of the Barnet schools this week. 

I've just learnt all I need to about Redfoo from Wikipedia, but the audience was given an education of sorts by a group of young men with learning disabilities, who were determined to compete just as much as the other acts from Barnet's schools. 

It was, of course, another "if only I'd known on the day he was born" moment. It was empowering - and to witness those parents, who don't have a child with a learning disability, cheer their lungs out - was just as it should be, but it was, all the same, fantastic.

LMFAO have millions of You Tube hits, and it felt like the noise of their entire fan-base in the Arts Depot this week. It was joyful to watch as Stan and friends brought the house down. 

Friday, 10 January 2014

Catriona's daughter's disabled. I'm sorry, I don't find Catriona "inspiring".

I've spoken before about how being a Down's dad has, at times, elevated me to superstar status, for people who think it's the job I was cut out to do. Very kind of them it is and very good for the ego. 

But consider this. A friend of mine, Catriona, has a daughter with Rett Syndrome. Rett Syndrome is the Cinderella to Down's Syndrome. Catriona hasn't been invited on the media recently. It's nowhere near as sexy for reporters. What's that all about? We both have a disabled child, but somehow Stan's of more "currency". (A recent journalist request asked for conditions that "aren't too rare". Quaint.)

But Catriona writes a fantastic blog. After a recent post on Facebook, a couple of people came on and said they find her inspiring. I talked to her, away from the glare of her Facebook wall, and we both agreed that the word makes us feel uncomfortable. 

We were dealt this hand and we get on with it in our own way. For me, this includes writing this blog, thumping the table on Sky News and making sure that Stan has a great life, included wherever possible. 

I was approached in the park a few months ago by a woman who said  that she'd seen me in the pool with Stan and how she thought I was a great Dad. Why? Because Stan has Down's? I could have been offended but wasn't because I see what she was trying to do. But, for all she knows, I could be serial killer on the side. Catriona and I didn't ask to be inspiring. We just do what we do and there are many parents of children (and adults) with learning disabilities who keep battling away. And that's why I wrote the Daily Mirror online article about why Rion Holcombe's success shouldn't be described as "heartwarming." 

There are exceptions. Speaking to Catriona, she says: “I am very happy indeed if professionals (therapists, teachers, social workers and others), who read what we write about our children, feel inspired to do a better job, as a result of understanding better children like ours and the families who love them. That kind of “inspired” is good!”

Talking of teachers; at Stan's school recently, I fulfilled my role as governor and attended the Xmas term awards ceremony. It was fantastic and a good chance to see how the teachers interact with the students. Many awards, including high GCSE marks, were handed out. But I stopped short of calling it inspiring because it was far more important than that. It wasn't heartwarming, it can't be described as: "didn't they try hard". It was just what these young people should be doing. It was a rattling good night out, celebrating richly-deserved success. 

Catriona tells me: “The problem I have with the word 'inspiring' is that it makes me feel 'other'; people are creating distance between us and themselves. This life could happen to anyone; it's not just for 'special' people.”

So I won't be calling Catriona "inspiring". She's fantastic of course, but she's motivated in getting the right things for her daughter, Amy. 

Wednesday, 25 December 2013

Down's bro film

"This is my brother. He can be very cute. He can also be a little shit."

And to think I asked for "heartwarming and earnest"....I'd been asking H to make this film for a while and he did it, edited on his iphone, in his own style.............

Down's bro film 

Saturday, 21 December 2013

Rion Holcombe: It's just the way it should be

There's been much interest in Rion Holcombe, who has got into Clemson University in South Carolina. The Daily Mirror called the story "heartwarming" and here's my response. 

Article in Daily Mirror. 

Thursday, 19 December 2013

Non-offensive elf

Stan doesn't have baby-sitters. He has carers. Often they're family members. Often we pay someone. But they're carers. This is an important distinction for me for a couple of reasons:

1. He's nearly at the age whereby, without Down's, we'd be able to leave him on his own for a while, or let him walk home alone. Therefore the person looking after him isn't looking after a baby. He needs extra support. That's it. So I've told those who look after him that they're skilled carers, not baby-sitters. 

2. It's easy for people to fall into the "mental age" trap. I can't imagine people being offended by Elf with Will Ferrell, and I'm certainly not. Ferrell plays a character who has never grown up; and still wants to be a child. That juxtaposition is funny and endearing and it's a lovely Xmas film. Stan is almost twelve and even though he sometimes enjoys things like the Wiggles, a pre-school group, he will also sit through something like the Hobbit. (Depending on the mood). It's simplistic to say that people with learning disabilities are somehow stuck on the "eight-years-old" bubble. And it's patronising. I'm uneasy about the defence that this man's attorney uses in this recent video news report

I've told Stan about the Santa thing. The beauty is that he probably does really think that Santas only live in shopping arcade grottos. He doesn't care if the "chimney thing" is real or not. But he's just as excited about Christmas as any other eleven-year-old. 

Am I being all politically correct here? So what if someone describes it as baby-sitting if they are doing a great job? Well; I suppose that there are enough people around who will always assume Stan is still stuck in a child-like bubble that he'll never escape from. And avoiding that sort of language may make people understand, a little bit more, that Stan's perspective on life is so much more intricate, complex and interesting. Merry Xmas.