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Archives for December 2012

Your inappropriate disability Christmas gifts

Hotch Potch | 11:49 UK time, Wednesday, 19 December 2012

Christmas presents

So picture this. You're disabled, it's Christmas morning and everyone is sitting around with presents festively littering the floor.

You pick up a rather exciting looking box with glittery paper. All your family stop to look as you unwrap it. What can it be?

As the final piece of wrapping hits the floor, everyone can now plainly see that the thoughtful gift bestowed on you, a wheelchair user, is a step aerobics DVD.

This could trigger anything from tears to laughter amongst all in the room - depending on where you are on your personal journey of acceptance. A badly-thought-through present which you might toss to one side with a world-weary tut, could cause your mum to dwell on it throughout the festivities, it might even ruin her day.

Television producer and former Ouch! regular, Kate Ansell, is, shall we say, challenged in the walking department, due to her cerebral palsy. One Christmas, when she was a child, Kate received a skipping rope from a family friend. She recalls her brother also getting one and thinks they may have been hand made, to boot. "Clearly a ludicrous present to give a kid with CP", she says. "I don't think anyone really reacted, now I think back to it. I was quite pleased with the rope but gutted when I turned out to be rubbish at skipping.

"See also hula-hoop," she adds.

Receiving something wholly unusable is one thing, but what if the giver has seemingly put thought in and still managed to get it very wrong?

"I once received a set of juggling balls," remembers media consultant Julie Howell who has multiple sclerosis. "The giver told me they were to improve my coordination. Well-intended but ineffective - juggling is not a cure for MS."

She was annoyed and professes she'd have been happier with a more bog-standard Christmas gift: "I'd have preferred Maltesers. I can juggle [them], one at a time, straight into my mouth - up to 150 times in a row without breaking a sweat." Needless to say, Julie's balls remain unjuggled.

We asked our disabled followers on Twitter about inappropriate presents they have received.

Filed under thoughtless was @Razz70's Action Man tower. "Not being able to stand", he Tweets, "meant I couldn't reach the top of it!"

Others that by rights should not have made Santa's list but do make ours, include: Wheelchair user Lucy Wood who once received a push along Hoover. Dominique who tells us she received "a DuckTales comic and some David Hasselhoff posters" though she's blind and couldn't appreciate either. And Isla, who is hearing impaired, was surprised to have received a music combination CD.

As the hours went by, your responses wowed us in the office as they became steadily more and more, how should we put it, "thought free"? We had reports of wet room owners getting bubble bath (not great for a shower), chocolate for people with diabetes and printed books for people who can't see.

Some of the examples you sent us felt pretty poignant but whether you laughed it off or cried over your crackers, were lost to the minimal 140 character limit allowed in a tweet.

One dad, Graeme Cook, contacted us by Facebook. His daughter received a Pet animal for the X-Box Kinect that you work with voice commands but, he tells us, "She cannot talk". And Chris Parker told us why being asked, "What are you having for Christmas dinner?" touched a nerve: "I am not able to ever eat so why do they think I can eat on Christmas day." He calls it "V insensitive!"

Our tweets inspired Lucy Wood to write a whole blog post on the subject of inappropriate presents. The closing line of her post sums it up quite nicely: "If it is the thought that counts, then what were you thinking?" We'll close on that thought too.

If you've received a Christmas gift which hasn't taken your disability into account, tell us about it in the comments below.

You can follow Ouch! on Twitter and on Facebook.

Tips for an autism-friendly Christmas

Emma Tracey Emma Tracey | 15:01 UK time, Friday, 14 December 2012

Dylan and Jake Beadle in the snow with mum Tracy

Most of us see Christmas as a welcome excuse to break from the old routine, do lots of socialising and give and receive presents. But the holidays can prove challenging for children and adults on the autistic spectrum, who find change, crowds and surprises difficult to handle.

That's why Ambitious about Autism and the National Autistic Society have both thought to produce their own online guides to help people with ASD, and their families, to cope with Christmas time.

Tracy Beadle, mother of two children who are on the autistic spectrum, is one of the contributors to the Ambitious about Autism guide which has been crowd-sourced via social media and their Talk about Autism forums.

Her sons, seven-year-old Dylan Beadle and his four-year-old brother Jake both love Christmas but their social difficulties, sensitivities about touch, taste and noise, and untypical reactions to certain situations, have led mum Tracy and dad Glen to approach this part of the year a little differently.

Christmas preparations start for the family in late November to get Dylan and Jake ready for changes at home.

"We give the boys a count down of 'sleeps' before the decorations go up, and then again before they come down," Tracy says.

"A visual calendar is then hung in their bedroom and every night we stand and count the sleeps until Christmas Day."

The calendar is a sheet of paper with a square representing each day. All other squares are blank apart from Christmas Day which has present-bedecked stickers on it.

Both of the online guides appreciate that all children are different, so what works for one may not suit another.

The National Autistic Society suggests that some might benefit from having more events marked on their visual calendar, such as when the school holidays begin and end, when they can expect visitors and so on.

Finding out when preparation will begin at your child's school and then starting your family Christmas at home at the same time is another suggestion.

One Christmas inevitability for children is the annual school performance. Tracy's eldest son Dylan isn't a fan. "He has cried his way through the last three, so he isn't going to take part this year. It upsets him and it isn't an essential life skill."

Younger son Jake hopes to be in his school nativity play but Tracy says this took some work: "He went mad when he saw his shepherd's outfit, and said 'I go to school as a boy, not a shepherd'."

They took the costume in to school and introduced Jake to it slowly. He had learned the songs and was eager to go on stage, so after some encouragement from the teacher, Jake has been convinced to wear the robes during the show.

A fear of people in costume means that visiting Santa is not part of the Beadles' Christmas routine.

"We took Dylan once," Tracy remembers. "He was the only child there who, instead of sitting on Santa's lap, sat on a toy car and started playing with it. He wouldn't speak to Santa at all."

Like many others with autism, Jake and Dylan aren't good at faking delight if they get an unwanted gift. Friends and relatives now always ask mum and dad what the boys would like. For Tracy, this is an easy one to answer.

"They do tend to have an obsession each Christmas," she says. "It is Angry Birds this year. Last year it was Disney's Cars."

Tracy is aware of parents who discourage their autistic child's obsessions but she takes a different approach. "I completely over-indulge the obsessions, buying them every toy they want because I find that if you over-indulge them, it passes more quickly."

Both guides have plenty of tips for managing Christmas Day. Advice includes putting batteries in toys in advance so that they can be played with straight away and making sure that the Christmas meal is ready at a prearranged time.

The consensus, though, is to find a routine that works and stick to it. Through trial and error, Tracy and Glen Beadle have found a pattern of events which the boys like and which they expect to happen. So, what's their pattern?

"On Christmas Eve we go to visit my nan," says Tracy. "On the way home we take them to visit a house with thousands of pounds worth of decorations. On Christmas Day, we open presents and then my immediate family come for dinner."

You can follow Ouch! on Twitter and on Facebook.

News round-up: Meat on the benefits bone

Damon Rose Damon Rose | 14:44 UK time, Friday, 14 December 2012

Newspapers

Pip pip and hello. We're rounding up some of the noteworthy headlines of the week as we do every Friday.

Many will have given a sigh of temporary relief at the news that the expected Personal Independent Payment assessments are to be kicked back into late 2015 for the majority of those who are presently in receipt of the outgoing Disability Living Allowance.

A quick potted history goes like this: DLA is changing to PIP. The government hope to save public money on this and say they want the new benefit to go to those most in need. Face to face assessments to determine how disabled you are, were due to happen from early 2013. Now only new claimants, or those with a change in their condition, will be assessed as per the original timetable.

Disability blogger Sarah Ismail wrote of her happiness that "we get to keep DLA as it is for a whole two years longer than we previously thought!"

A number of anxieties had been voiced about the original dates and the government seem to have acknowledged this. They now say they will have time to alleviate concerns and get it right. Many campaigners would rather it stay as it is, however some agree it needs updating.

Could this be the first official sign that further changes to the original plans might be forthcoming?

Read disability minister Esther McVey's statement on the changes which sheds some new light and includes details which gently gives a clue to how much money you might receive come P-Day.

Bloggers are also voicing their concern about the new Motability criteria in news that we're sure will receive wider attention. It's all related as DLA was a straightforward passport to other benefits and helpful schemes.

• You can follow Ouch! on Twitter and on Facebook.

Elsewhere in the news

Blue Badge scheme in Wales to be extended to conditions like autism and also to those receiving PIP (BBC News, Friday 14 December)

Blind busker: A subterranean story (BBC News, Friday 14 December)

Disability Living Allowance change timetable extended (BBC News, Thursday 13 December)

Anti-depressant eases symptoms in just over an hour (Daily Mail, Thursday 13 December)

Disabled man takes government to court over benefit test (The Guardian, Thursday 13 December)

We live 'longer but sicker' as chronic diseases rise (BBC News, Thursday 13 December)

After the Paralympics: Has anything changed for disabled people? (BBC News, Thursday 13 December)

UK 'more positive about disability' after Paralympics (BBC News, Thursday 13 December)

Doubts affect inconsistent police disability statistics (BBC News, Thursday 13 December)

Jonnie Peacock: Disability sport not just 'filler' (BBC Sport, Wednesday 12 December)

Winterbourne View scandal: Government rethinks use of hospitals (BBC News, Monday 10 December)

-----Original Message-----
From: Damon Rose
Sent: 14 December 2012 13:40
To: Emma Tracey
Subject:


News round-up: Meat on the benefits bone

Pip pip and hello. We're rounding up some of the noteworthy headlines of the week as we do every Friday.

Many will have given a sigh of temporary relief at the news that the expected Personal Independent Payment assessments are to be kicked back into late 2015 for the majority of those who are presently in receipt of the outgoing Disability Living Allowance.

A quick potted history goes like this: DLA is changing to PIP. The government hope to save public money on this and say they want the new benefit to go to those most in need. Face to face assessments to determine how disabled you are, were due to happen from early 2013. Now only new claimants, or those with a change in their condition, will be assessed as per the original timetable.

Many anxieties had been voiced about the original dates and the government seem to have acknowledged this. They now say they will have time to eleviate concerns and get it right. Many campaigners would rather it stay as it is, however, though agree it needs updating.

Could this be the first official sign that further changes to the original plans might be forthcoming?

Read disability minister Esther McVey's statement on the changes which sheds some new light and includes details which gently gives a clue to how much money you might receive come P-Day.

Bloggers are also voicing their concern about the new Motability criteria in news that we're sure will receive wider attention. It's all related as DLA was a straightforward passport to other benefits and helpful schemes.

• You can follow Ouch! on Twitter and on Facebook.

Elsewhere in the news

Blue Badge scheme in Wales to be extended to conditions like autism and also to those receiving PIP (BBC News, Friday 14 December)

Disability Living Allowance change timetable extended (BBC News, Thursday 13 December)

Anti-depressant eases symptoms in just over an hour (Daily Mail, Thursdsay 13 December)

Disabled man takes government to court over benefit test (The Guardian, Thursday 13 December)

We live 'longer but sicker' as chronic diseases rise (BBC News, Thursday 13 December)

After the Paralympics: Has anything changed for disabled people? (BBC News, Thursday 13 December)

UK 'more positive about disability' after Paralympics (BBC News, Thursday 13 December)

Doubts affect inconsistent police disability statistics (BBC News, Thursday 13 December)

Jonnie Peacock: Disability sport not just 'filler' (BBC Sport, Wednesday 12 December)

Winterbourne View scandal: Government rethinks use of hospitals (BBC News, Monday 10 December)

Ouch! talk show 92: Being stylish, busking blind, reviewing 2012

Emma Tracey Emma Tracey | 11:12 UK time, Thursday, 13 December 2012

Presenters Rob and Liz with Paul Carter and Tony Garrett

Left to right - Rob Crossan, Liz Carr, Paul Carter, Tony Garrett (in Ouch! studio)

Subscribe to Ouch! as a podcast Read the transcript

See England through the eyes of American Muslim comedian with cerebral palsy, Maysoon Zayid. Plus, an app created to help disabled people stay stylish, the blind man earning a living by whistling at London tube stations, and we find out how much Paul Carter and Tony Garrett remember about 2012's disability news stories. Liz Carr and Rob Crossan present.

Listen for Tony's thoughts on the recent Paralympics festival.

Christmas is celebrated on the show with copious amounts of mince pies and carols whistled by blind busker Mark Campbell.

Links from the show

The website of American Muslim comedian with cerebral palsy, Maysoon Zayid

Blue Badge Style - On the show, website and app creator Fiona Jarvis described it as "A Guide for the Discerning Less Able".

The British Paralympics Association website - organisers of the 2012 Paralympics festival held on 3 December

Journalist and contributor to the 2012 review, Paul Carter, on Twitter

Tucked inside the interview with whistling blind busker Mark Campbell is a top trick of the trade. Take note, he says it works like a charm every time.

You can follow Ouch! on Twitter and on Facebook.

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