BBC BLOGS - The Ouch! Blog It's a disability thing

Goodbye - Ouch is on the move

Damon Rose Damon Rose | 14:34 UK time, Thursday, 18 April 2013

This is the last entry on our page here. As of Thursday our blog will move to a new home, with a fresh format. Visit our new page to keep up with our stories and podcasts all in one place.

While this version of Ouch will no longer be updated, it will stay here for reference. Thanks for reading, and we look forward to keeping the conversation going in our new home.

We may have moved but the address bbc.co.uk/ouch will still take you to our latest stuff, now part of the News site.

See you in the new place.

Ouch Team

PS: Before 2011, Ouch had yet another home and a slightly different remit at the BBC. You can see even older archive dating back to 2002 which includes comedy, cartoons, video and columns.

Ouch's new channel on Audioboo

Damon Rose Damon Rose | 14:12 UK time, Monday, 15 April 2013

We're making it easier for you to delve into Ouch

As well as the blog, we do a monthly internet radio programme. And now we're posting clips of the programme to a new channel we've got on Audioboo.

Here are three items taken from the talk show that you can click and listen to right now:

See my "bed life", see the whole me - an interview with artist Liz Crow who was about to spend two days and nights exhibiting herself in bed, being the disabled person she is when she's not putting a brave face on things out in public. She also talks about standing on the fourth plinth at Trafalgar Square dressed as a Nazi to highlight the disability holocaust in World War II.

Winter Paralympics: What do you know about the Games? Anything? (fact burst) - Just as it says on the tin. Rob and Liz fire questions at Tony Garrett about the colder non-London games ahead of us in 2014. If you know nothing about them, this'll bring you up to speed - quickly.

"Disabled people don't exist in a vacuum." DLA changes could have knock on effects for others - Broadening-out the benefit change debate, blogger Emma Round (Pseudo Deviant) and stickman cartoonist Hannah Ensor discuss how they spend their benefits and who it will affect if their money is reduced or taken away, includes taxi drivers and local businesses.

We're regularly adding new clips from the programme and will bring you more audio in the future.

Click, listen and share. Audioboo is a social networking site for playing and sharing audio, and having discussions around it.

You can follow Ouch! on Twitter and on Facebook.

Katherine Kowalski: Life with Lawrence, whose syndrome has no name

Guest Guest | 15:49 UK time, Friday, 12 April 2013

No-one knows why two-year-old Lawrence lives with multiple disabilities.

To mark the inaugural Undiagnosed Children's Awareness Day on 13 April, mum Katherine Kowalski writes about her son's SWAN (syndrome without a name).

For most parents, life with a two-year-old involves hours of chasing a small person around, kicking balls, building towers, man-handling temper tantrums, breezily ignoring food fads and running the gauntlet of potty training. But even if you don't love your toddler's terrible twos, you can rest easy, pretty sure that they are on their way to becoming an independent little being.

Life with Lawrence is different. We don't know whether he will ever learn to crawl or feed himself, let alone walk, talk or live independently. We don't even know whether he will see adulthood. And we don't know why.

Lawrence was born healthy but is now what doctors call "complex". It became clear early on that he wasn't developing at the same rate as his peers and before we knew it we were on a roller coaster of investigative medical assessments and tests to find a cause.

His brain, heart and kidneys have been scanned. He's endured chest x-rays, chromosome testing, repeated and inconclusive eye and hearing tests and invasive surgery. And he's also spent time in the High Dependency Unit for seizures that caused him to stop breathing.

But despite the medical profession's best efforts, Lawrence's genetic syndrome remains nameless, categorised only by a very long (and expanding) list of symptoms.

Without a label for his disability, it is impossible to know what Lawrence's future holds. This uncertainty is frightening but it has also taught us to make hay while the sun shines.


Lawrence on the beach in Cornwall


Instead of dreaming of retiring to Cornwall, we recently upped sticks and moved there to a house by the sea. Lawrence likes to copy the sound of the seagulls and on sunny days, he enjoys nothing more than a good splash about in a rock pool.

His presence in our lives has brought those little family moments that can so easily go unnoticed into glorious technicolour. Lawrence managing to sit unaided after a year of daily practice, or his four-year-old sister Beatrice writing her name for the first time are our jump-for-joy moments.

Parenting a child with an undiagnosed syndrome can be tough. There are resources available for children with well-known disabilities like Down's syndrome or cerebral palsy, and guides for accessing services specific to them. But it is very hard to know where to fit in, when there is no well-trodden path to follow.

With no answers on the horizon, I searched online for families in the same situation. There are rather a lot of us as it happens. In fact, between 30 and 40% of children with additional needs have a SWAN - syndrome without a name.

I'm now a proud member of SWAN UK, the organisation supporting families with undiagnosed children here in Britain.

While our sons and daughters are all different, there is true strength in numbers and we celebrate the good times as well as supporting each other through the bad. Because we all understand that life is unpredictable with an undiagnosed child.

I am often asked how I manage to remain calm and positive while dealing with such huge uncertainty. The truth is that Lawrence makes it easy. His disabilities may affect every area of his development but his sense of humour button is firmly switched on. He has a divine sense of the ridiculous, he laughs when his sister is getting told off, he likes to "sing" along to 80s power ballads in the car and has a penchant for country music while being a budding percussionist himself. A curry lover and telly addict, in many ways he's growing up to be a pretty typical bloke.

In spite of his difficulties, top priority for Lawrence is getting on with the business of being a loud, messy, funny, two-year-old boy.

• Katherine Kowalski writes about life with Lawrence on her blog, Orange This Way.

You can follow Ouch! on Twitter and on Facebook.

Sledge hockey: The crash bang of wheelchair rugby, with ice

Emma Tracey Emma Tracey | 08:49 UK time, Wednesday, 10 April 2013

Two players tussle for the puck. Taken by On Edition Photography

What is sledge hockey? And why should we be rooting for Team GB to qualify for the 2014 Winter Paralympics?

"It's the disabled version of ice hockey," says GB sledge hockey goalie Rob Gaze. "Most of the rules are the same, except obviously most of us can't move our legs."

He started playing the rough and ready disability sport after a spinal injury eight years ago. Click the above play button and you can hear in his voice how much he loves it. Gaze was speaking on the Ouch! talk show for April.

The goalie says: "We sit in a little chair, which is strapped to a frame, which has skates on the bottom. And we use two sticks rather than one. They're about a quarter of the length of normal hockey sticks but have the same shooting head on. They have [ice] picks on the bottom so we can push around the ice."

Gaze plays wheelchair basketball too but earlier, in a poetic moment off air, he told us: "There's something about being on that ice. It's cold but it's hot ... there's the mental game of psyching out opponents like in wheelchair basketball, but it's also very physical.

"[It's] one of the best sports in the world."

Comparisons are made between sledge hockey and wheelchair rugby. People were shocked and delighted during the London Paralympics on the hitherto unlikely sight of disabled people being turfed out of their chairs onto the court. Sledge hockey is similar because of the speed, the contact and the number of injuries received during play.

"You can't start fights otherwise you're going to get sent to the sin bin and you can't punch people," says Gaze. "But there's nothing wrong with you going in with your shoulder into somebody and knocking them flat off their sled.

"If they've got the puck, rather than going for the puck, you try to take the man away."


Sledge hockey team in action. Taken by On Edition Photography


The GB sledge hockey team describe themselves as "underdogs". According to Gaze, this is a status they like. They surprised everyone recently by winning bronze at the world championships in Japan and it has earned them a place at the final tournament later this year. Winning a bronze there will mean they qualify for the 2014 Winter Paralympics in Sochi, Russia.

So, will they make it? Gaze says: "I'm a bit nervous but yeah we can do it. We push ourselves harder every time we go out, and people have started taking notice. So there's not much more you could want."

Rob Gaze was interviewed on the April episode of the BBC Ouch! talk show.

You can follow Ouch! on Twitter and on Facebook.

Ouch! disability talk show 96: Sledge hockey, stick men and welfare

Damon Rose Damon Rose | 12:15 UK time, Thursday, 4 April 2013

GB sledge hockey players preparing to hit the puck

Never heard of Sledge Hockey? Find out more about the Winter Paralympic sport on the show

This month: We discuss how benefit cuts could affect the economy, how campaigning on social media can be unhealthy as well as positive and how to communicate by message cards if you fall over or don't want to talk.

Also, what is Sledge Hockey?? Our basic guide to the Winter Paralympics now one year away - featuring Tony Garrett, sledge hockey goalie Rob Gaze and visually impaired skier Kelly Gallagher.

Liz Carr and Rob Crossan present.

How do I listen? Stream it on the web, download episodes or subscribe as a podcast with iTunes and other services. Details below.

RELATED LINKS

You heard the show, now find out more about the people and subjects featured.

Hannah Ensor's blog - On the show, Hannah the stickman cartoonist tells Liz and Rob about the cards she has made which she shows the public if she has lost her voice, fallen over, or other disability mishap. They're designed to communicate friendly reassurance in those who might otherwise panic or do the wrong thing.

Pseudo-Living - a blog by Emma Round - Emma took part in the discussion about welfare, social media and the economy on the show. Read her blog and follow her observations and pragmatic positive campaigning efforts.

What is Sledge Hockey - Listen to the show to hear GB's goalie Rob Gaze explain it with love for the sport in his heart ... or click to read this explanation on Wikipedia.

Winter Paralympics: Estonia win keeps GB on course for Sochi - Good news for the GB team via the BBC Disability Sport site.

Northern Ireland skier Kelly Gallagher GB's best hope for Winter Paralympic gold (BBC) - Kelly is our only gold medal hope at the Winter Para Games, the pundits say ... and you can hear her on the show.

Paralympics GB - Read the latest winter and summer Paralympic updates for Great Britain and find out more about disability sport and the people involved.

• The Ouch! talk show is a BBC News programme made exclusively for the internet and produced monthly by a team of disabled journalists and presenters.

Go to the downloads page where you can grab single shows or subscribe as a podcast via iTunes and other podcast apps. Play it on your computer, phone or other devices.

Read a transcript of the show

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