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Archives for July 2012

Panorama, Disabled or Faking it

Emma Emma | 16:52 UK time, Monday, 30 July 2012

Professor Malcom Harrington

Professor Malcolm Harrington

Disabled film-maker Kate Ansell directed tonight's Panorama about Employment Support Allowance and the controversial assessment used to determine if people are entitled to receive it. Here she blogs about the making of it and what you can expect to see.

Tonight, a Panorama investigation into Employment Support Allowance assessment and its impact on disabled people who are unable to work broadcasts on BBC-2. I directed the film, alongside producer Julia Berg and reporter Declan Lawn.

Yesterday, sitting in a darkened edit suite, finalising the script while struggling to open the childproof cap on my anti-spasmodic medication, rearranging the furniture so I could sit comfortably, groaning at the pile of Access to Work paperwork I have to complete when this is over, I did consider the ironies of the situation.

As most disabled people know, Employment Support Allowance was introduced in 2008 to replace Incapacity Benefit, and all 2.6 million IB claimants are in the process of being migrated across to ESA. Officially, a central reason for the change is that many people have claimed IB for a decade or more, and no one has ever asked them if they want to or can return to work. In practice, with almost a third of IB claimants who have been reassessed being found 'Fit For Work', many have wondered if this is instead an exercise in getting disabled people off benefit in a time of recession - I wanted to find out.

As someone with a significant impairment who does work, most of the time, I know that it's possible for disabled people to succeed in the workplace. I also know that it can be really difficult and, however much I want to work, I probably won't always be able to.

As a disabled person, I'm well aware of the noise that surrounds the Work Capability Assessment process which decides whether someone qualifies for ESA, and the many criticisms which have been levelled at it. As a journalist, I was keen to establish the reality of the situation. Declan, Julia and I set about finding out.

Along the way, we spoke not just to claimants, but to human beings involved in the Work Capability Assessment process, including five who have carried out the controversial face to face medical assessments. In an anonymised statement, one of those assessors told us there are pressures for healthcare professionals to see eight claimants a day, and not to put more claimants than average in the support group - the group where the highest benefit payout occurs and where the most severely disabled claimants, who are unlikely to work again, end up.

We also spoke to Professor Malcolm Harrington, currently carrying out an independent review of the process on behalf of the Department of Work and Pensions, who told us the WCA is "patchy" and there are people currently going through the system who are suffering.

The DWP's review is due to last five years. Prof Harrington told us he is leaving at the end of this, his third year.

Panorama also met Andy King, who was placed in the 'Work-Related Activity Group' - for people who might, with support, be able to return to work. This occurred while he was in the Maudsley Hospital, sectioned under the Mental Health Act. At the time he was in a catatonic state and unable to speak. He has bipolar disorder and feels that being migrated from Incapacity Benefit to ESA contributed to the worsening of his health.

The Maudsley's dedicated welfare team told us that they have come across many similar cases of service users with severe psychiatric problems being inappropriately assessed, so much so that they say dealing with ESA claim problems like Andy's is putting pressure on hospital resources.

We met the family of Stephen Hill, who died of heart failure just 39 days after being found fit for work, and Sharon Thompson, who has successfully appealed against two decisions to put her in the 'Work Related Activity Group' despite a progressive impairment which leaves her in constant pain and requiring full time assistance from her husband.

ATOS Healthcare, who run the WCA tests on behalf of the DWP, deny there are any targets in their system, and acknowledge the process can be stressful for claimants. They say their staff are trained to treat people sympathetically and professionally, and they will investigate any serious suggestion their work has fallen below standard.

Employment Minister Chris Grayling told us the system is being improved and is about improving the lives of disabled people, rather than forcing them back to work.

You can watch the full Panorama report on BBC Two at 8:30pm tonight, or on iPlayer afterwards.

Blind people to get their own special channel for the Olympic opening ceremony

Emma Emma | 14:11 UK time, Friday, 27 July 2012

On 27 July, one of the many ways to catch the Olympic opening ceremony on the BBC will be on a sepaerate channel aimed exclusively at visually impaired people.

In a UK first, 5 live's Nick Mullins will make the very visual spectacle more accessible to those who can't see, by building audio description into an alternative commentary for the event.

In audio description, a narrator uses breaks in dialogue to describe visual elements of a programme that blind viewers wouldn't pick up on, for example: body language, facial expression and movement.
It's usually an extra track on pre-recorded shows and can be heard through all digital and satellite services if you have the right equipment.

Typically, soaps, major dramas, children's shows and nature programmes are audio described, but the extra audio is prepared in advance and then recorded to fit perfectly into gaps in a programme's main dialogue.

Audio description rarely ventures into live TV, where gaps in dialogue are difficult to anticipate, and where anything could happen on screen.

For the Olympic opening ceremony, rather than have an audio describer accidentally talk all over Huw Edwards and other BBC commentators when trying to add information here and there, Nick Mullins will provide an alternative commentary that you can choose, but with extra visual description built in.

Nick is used to commentating on sporting events for TV and radio but has never attempted AD.

Ben Pennington at Red Bee Media, which provides audio description to the BBC and other major channels, has given Nick a crash course. He explains: "Commentators often talk about what is happening around them. The big difference with audio description is that you must describe what's on the screen. Blind and visually impaired people want to share in the TV experience."

Deciding on what information to share is really a judgement call, says Ben: "You need to put yourself into the position of the audience and also the programme makers. Once you've done that you have to decide what is the most important information based on what's being conveyed already by music, sound effects and the commentary."

Tune in tonight to hear the enhanced audio description and event commentary soundtrack.

There are a variety of ways to listen. On your television, it will be available on Sky Channel 451, on Virgin by pressing the red button and on Freeview, (without pictures due to technical constraints) on channel 301.

Follow this direct link to watch the opening ceremony online with the AD enhanced commentary, or catch it afterwards on iPlayer.

The AD commentary starts at 8.50pm.

Nick Mullins can also be heard on the BBC's temporary new digital radio station 5 live Olympics Extra.

The BBC would love to get feedback on this commentary, the concept of which is so new that it doesn't yet have a name. Let them know how it was for you in the comments below.

Disability news roundup: 4 Goes Mad

Emma Emma | 11:19 UK time, Friday, 27 July 2012

Newspaper front pages

All this week, Channel 4 has been showing a collection of programmes about mental health, which they have called 4 Goes Mad.

The series included A little bit OCD, John Richardson's film about obsessive compulsive disorder and a documentary presented by Ruby Wax about mental health in the workplace.

The title, 4 Goes Mad, has split opinion in the mental health community, something Ilona Burton explored in her blog post for the Independent on Tuesday in which she concluded: "Either way, it certainly got people talking weeks before the first instalment was screened. The title - sexy or sadistic - worked."

Elsewhere in the news

Ground-breaking windpipe-transplant child 'doing well' (BBC News, Thursday 26 July)

Takeover hopes for Remploy's Wrexham factory (BBC News, Thursday 26 July)

If you judged the world on advertising, you wouldn't know disabled people exist (The Independent, Thursday 26 July)

Higher risk of suicide among 'Troubles children' (BBC News, Wednesday, 25 July

Actor David Birrell sues Donmar over gun accident (BBC News, Tuesday 24 July)

Disability is multi-dimensional, so a joined-up response is needed (The Guardian, Wednesday 25 July)

ESA: disabled betrayed by ConDems government cuts to benefits for the needy (The Mirror, Wednesday 25 July)

Valentina Guerrero: Ten-month-old girl with Down's syndrome becomes the new face of swimwear label Dolores Cortes (The Daily Mail, Tuesday 24 July)

Deaf and disabled artists take centre stage (The Independent, Monday 23 July)

A cheaper way to print Braille? (The Telegraph, Sunday 22 July)

Learning disabled athletes make a welcome return to the Olympic fold (The Guardian, Tuesday 24 July)

Scotland needs services that are dedicated to supporting suicidal people (The Guardian, Sunday 22 July)

TV and radio on iPlayer: Tanni Grey-Thompson in Ab Fab and Ruby Wax on depression at work

Emma Emma | 12:09 UK time, Wednesday, 25 July 2012


This week various BBC programmes have been interviewing interesting disabled folk and reporting on innovative technology which could, in the future, be of practical help to those with sensory impairments. Plus, In Touch asks, why the sudden rise in numbers of blind people visible in TV ads?

Here's a brief list of disability related 'stuff' you can enjoy and learn from on iPlayer this week.

Mid Week (BBC Radio 4)
Disabled dancer Nick Phillips was One of Libby Purves' guests on Wednesday. Nick is one of six performers with disabilities starring in In Water I'm Weightless, which will be performed in Cardiff by National Theatre Wales as part of the London 2012 Festival.

Saturday Live (BBC Radio 4)
Paralympic athlete Baroness Tanni Grey-Thompson is with Sian Williams and Richard Coles throughout the show. They chat about her early life, including her father's refusal to make the family home accessible and her mum's fight to send her to mainstream school.

Tanni also stars as herself in the Absolutely Fabulous Olympic special.

Front Row (BBC Radio 4)
In a candid interview, Ruby Wax talks to Mark Lawson about her depression and explains the importance of speaking up about mental health at work.

Click (BBC World Service)
This episode from 17 July includes News of the application that converts images into sounds that may help blind people better navigate their surroundings, and the glove which converts sign language into speech.

In Touch
With the launch this month of a new soap advert on television featuring a visually impaired woman, Peter White speaks to the agency who created the concept and to the woman in the ad. Peter also talks to David Bolt of the Centre for Cultural and Disability Studies, asking if it's becoming a trend to use blind people in this way. Other recent ads have included the blind photographer in the mobile phone commercial, and a blind football team in an amusing commercial for a betting company.

[updated] Gin Ford-Williams wrote to us on Facebook to say we'd not included Tanni's appearance on the hilarious BBC Two mockumentary Twenty Twelve last night. So, tanni fans, there's even more of her to watch or listen to via BBC iPlayer than we thought. And even more over the next six weeks.

13 Questions: GB Paralympic shooter, Di Coates

Emma Emma | 09:26 UK time, Tuesday, 24 July 2012

GB Paralympic shooter Di Coates

The GB Paralympic team has athletes from a wide age range. There is around 50 years difference between the oldest and youngest. Last week we spoke to swimmer Amy Marren, one of the younger members of the squad at just 13. At the other end of the scale, Di Coates is the second to eldest; she also holds the mantle of Britain's most experienced Paralympian.

The 58-year-old from Hampshire will be competing in her eighth Paralympics in London, having made her debut in 1984 in Stoke Mandeville; she is the only member of the GB team to have previously competed in a home Games.

Di has won eight Paralympic medals over her career, including three golds, and is part of a 12-strong GB shooting team. Here she answers our 13 probing questions.

My earliest memory is ...
The 1984 Paralympic Games. I can't remember much before shooting - it's all I seem to have done!

The three words I'd use to describe myself are ...
Shy and retiring.

A little known fact about me is ...
I like working with children.

Given half a chance I'd relish the opportunity to bore you stupid about ...

I can't resist ...
a nice glass of rosé wine after a big competition.

During my time off I ...
Relax, have a nice meal with friends, good old English food.

Before I die I want to ...
Visit Japan.

If I suddenly became able bodied I would ...
Climb Snowdon.

My ideal dinner guest would be ...
Tom Selleck.

My first job was ...
In the accounts department of a company called Marconi.

Competing at London 2012 will be ...
Very exciting, the pinnacle of my career and the culmination of four years of hard work.

To win a medal would be...
Absolutely wonderful. I won medals in Sydney, Atlanta, Seoul and Barcelona but winning a medal in your home country, in front of a home crowd, would be something special.

For disabled people in the UK, London 2012 will be...
Good for the country to recognise disabled people and will show non-disabled people what we can do. Hopefully it will help towards a change in attitudes.

News round-up: Superhuman endeavours

Damon Rose Damon Rose | 09:59 UK time, Friday, 20 July 2012

Newspaper front pages


If we had a Word of the Week on the Ouch! Blog it would have to be superhuman - not merely because Channel 4 has chosen to headline its Paralympics advertising blitz with "Meet the superhumans" but because extraordinary human things have been happening.

Did you see the video of the New York bus driver who caught an autistic girl who fell three storeys? She's alive and barely scratched. Amazing!

Did you also hear about the autistic man who survived three weeks in a remote Utah desert? And the rescue helicopter deputy who said he was found thanks to recent autism awareness training he'd had, training which told him that people on the spectrum are drawn to water? So he flew along the river and spotted him sitting in it, emaciated and hours from dying? Wow.

Course, you can question the water fascination element - and we did earlier this week on the blog - but against all odds, the man's alive now. Amazing!

And so back to Channel 4 and its Meet the superhumans commercials. You can betcha that the channel executives had many hours of angsting over whether they should refer to disabled people as super or heroic. Why? Because it's not usually appreciated if superlatives are used to describe regular ordinary actions and everyone's everso conscious of getting things wrong. But of course Paralympics isn't everyday, and if we don't count Paralympians in the heroic Disabled Hall of Fame, then where do we put these people who've pushed their bodies and spirit to the limit? Answers on a postcard, or just in our comments below.

Elsewhere in the news

The proof that Aids can be cured? (The Independent, Thursday 19 July)

Father bans his four-year-old daughter from Make-A-Wish trip to Disney World, because she's not dying anymore (Daily Mail, Thursday 19 July)

[Asperger hacker] Gary McKinnon "no choice" but to refuse medical test (BBC News, Thursday 19 July)

Disabled workers strike over plans to close Remploy factories (The Guardian, Thursday 19 July)

Tiny eye implant could restore sight to the blind - with vision returning instantly, and recovery in just a week (Daily Mail, Thursday 19 July)

Olympic torch route, day 61: girl with spina bifida becomes charity celebrity (The Guardian, Wednesday 18 July)

Revolutionary wheelchair design to go into production (BBC News, Wednesday 18 July)

Bus driver saves [autistic] girl who fell from three stories high (BBC News, Tuesday 17 July)

Feature: Sightseeing when you can't see (BBC News, Tuesday 17 July)

Feature: The "despair" and "loneliness" of austerity Britain (The Guardian, Tuesday 17 July)

Paralympic Games: Channel 4 to run biggest ever marketing push (The Guardian, Tuesday 17 July)

Paralympic swimmer Dave Roberts fails in Paralympic selection fight (BBC Sport, Monday 16 July)

US autistic man survives in Utah desert for three weeks (BBC News, Friday 13 July)

In Pictures: Liverpool's DaDaFest 2012 (BBC News, Friday 13 July)

13 Questions: GB Paralympic swimmer, Amy Marren

Guest Guest | 11:39 UK time, Thursday, 19 July 2012

Amy Marren - GB Paralympic swimmer


Amy Marren will be one of the youngest members of the British team at the London Paralympics.

The 13-year-old from Hornchurch in Essex [she celebrates her 14th birthday on 13 August] started swimming when she was aged four at Romford Town swimming club and will make her Paralympic debut on home soil.

She swims in the S9 category and holds British records in the 200m backstroke and 800m freestyle. Here she answers our 13 quick questions.

My earliest memory is...
Going to Australia with my grandparents when I was three and a half to see my aunt who lives on the Gold Coast.

The three words I'd use to describe myself are...
Talkative, bubbly and loud.

A little known fact about me is...
I went on a singing competition on Nickelodeon when I was younger. I didn't win and I got gunged. The slime was in my hair for a couple of days. It was embarrassing.

Given half a chance I'd relish the opportunity to bore you stupid about...
Science. I love science and pay attention in the class. I love biology and also telling people useless facts like nuclear waste is stored underground and then put into shipping crates.

I can't resist...
A chocolate milkshake.

During my time off I...
Chill with my friends and catch up with them.

Before I die I want to...
Travel the world - especially India because it looks so beautiful and there is always something going on.

If I suddenly became able bodied I would...
Try a different sport or see what swimming is like with two hands.

Someone should invent...
A time machine because that would be the coolest thing ever! I would go back to olden-day London because I love history.

My ideal dinner guest would be...
Justin Bieber.

Competing at London 2012 will be...
Amazing and memorable, and I want to enjoy it.

To win a medal would be...
Absolutely phenomenal. I definitely wouldn't forget that in a hurry.

For disabled people in the UK, London 2012 will be...
Really inspirational to see other people with disabilities giving it a go and winning medals. And it might lead them to take up sport.

- Amy Marren was interviewed for Ouch! by Elizabeth Hudson, BBC Sport.

• For the latest Paralympics news and analysis, go to the BBC Disability Sport website.

• Watch an interview with Amy Marren on YouTube.

Are people with autism drawn to water?

Damon Rose Damon Rose | 12:52 UK time, Wednesday, 18 July 2012

Drop of liquid falling into water


Against all odds, a missing autistic man was found after three weeks in a remote unforgiving Utah desert last week.

William Martin LaFever, 28, was said to be emaciated and could not stand when he was found sitting in a river 40 miles from where he set out.

It seems that a bit of luck was on LaFever's side as, when the call went out, it happened that one of the rescue team had recently had some training on finding people with autism, and put the helicopter in just the right place.

The LA Times reported that local deputy Ray Gardner's training had "taught him that those with autism are naturally drawn to water, so the helicopter search focused on the Escalante River."

They didn't expect to find him alive and, judging by his emaciated state, guessed he would not have survived another day.

The notion that autistic people are "drawn to water" has caused a bit of a buzz on autism discussion forums like Wrong Planet.

Pixelpony writes: "I am kind of obsessed with flowing water. Nifty water features and mountain streams are like an on switch for happy. I can stare at them for ages. Even better if I can get down to the water and wade in it, play in it, float things in it, splash in it. Mountain streams are the best though - the water is always cold and clear. Fountains can be good, but they are often warm, which isn't nearly as good."

Jediyoda said: "I love waterfalls, running streams when I go 4x4 wheel driving; it's so soothing and relaxes me. When I was young Mum and Dad used to put me in the bath to settle me down even as I got older and if I have a meltdown I go and have a shower or, if I'm at Mum and Dad's or my friends' house, they go fill the bath up and I sit in the bath listening to my music. [In] about half an hour I'm back to normal."

But Joe90 is confused by the water fascination talk: "I don't know where they got this from. I'm not drawn to water, I never even drink water. I prefer juice or milk or coke or other drinks like that."

London-based Robyn Steward trains professionals about autism and is on the spectrum herself. She doesn't believe that there is a generalised "draw" or love for water in people with autism, but can imagine that some people could be distracted by its look: "There are people on the spectrum who get fixated visually with patterns. For example, people get coins, spin them and sit and stare. Autism affects how visual processing works, there are some who need lots of stimulation as they're under stimulated.

"I've had clients who have refused to have showers, it can feel like being pelted by little golf balls, but they have enjoyed a bath as water isn't being fired at them. Others might hate it as it could make them feel like they're on a ship. It's all sensory."

The media reports don't shed further light on the training but Robyn believes it's unlikely to be related to a survival or innate water-divining instinct, she says: "Water makes patterns, ripples and stuff."

LaFever was on his way to Page, Arizona. His family suggested he should hitch but he decided to hike along the river and then try to catch a boat. Whether he was drawn to the river as a result of his autism, because he was thirsty or thought it a good navigation aid through the rocky featureless terrain, perhaps isn't the point. He was, however, very lucky to be found by a police officer who had a plan thanks to recent training.

How a TV show for deaf children spawned Wallace and Gromit

Damon Rose Damon Rose | 12:33 UK time, Tuesday, 17 July 2012

Wallace and Gromit on a bike, being filmed in front of a blue screen

If it weren't for deaf children, Wallace and Gromit may not exist.

How did I come to this unexpected conclusion? Answer: with a little help from Radio 4's Britain in a Box broadcast last Saturday and still available on BBC iPlayer.

This series tells the stories behind the making of TV classics, and in the final episode Paul Jackson looks at Vision On, a BBC children's programme that mixed art, animation, clowning, dangerous stunts and... sign language.

Running from 1964 to 1976, it featured fast-paced visuals and mayhem, not to mention explosions, and was based around creativity and art.

Each programme had a theme such as triangles, circles or black and white. There wasn't much talking in Vision On, but all words were signed by its main presenter Pat Keysell, a former teacher and deaf-theatre practitioner. It also featured inventor Wilf Lunn, Sylvester McCoy - who went on to be the seventh incarnation of Doctor Who in the mid-1980s - and Tony Hart.

You would be forgiven for not realising that the programme was, initially at least, intended for deaf children. Many young viewers didn't realise this, but it helped to normalise sign language in Britain and the many countries it was sold to around the world.

Those born after the mid-70s are unlikely to remember it, but will probably recognise the music from The Gallery segment and also the children's art programmes it spawned. Vision On begat Take Hart. Take Hart begat Hart Beat. Hart Beat begat Smart Hart, which begat On Your Marks and more. Tony Hart continued to present Vision On's offspring art programmes until 2000.

The animated clips and film sequences shown on Vision On such as The Prof and the Greeblies were contributed by amateur filmmakers. Amongst these were David Sproxton and Peter Lord. Towards the end of Vision On's run, they pitched a new character to the producers, a superhero called Aardman. Recognise the name?

Aardman Animations, as they became, then created Morph, the fractious little clay man who lived in a pencil box on Tony's table top in Take Hart. Later came Creature Comforts, Peter Gabriel's Sledgehammer video, the feature film Chicken Run, and, of course, the much loved Wallace and Gromit.

• Listen to Britain in a Box for more behind the story of the memorable long-running children's programme and to find out what television offered deaf people before Vision On.

News round-up: More concern about benefits changes

Damon Rose Damon Rose | 11:25 UK time, Friday, 13 July 2012

Newspaper front pages

The Guardian published an article this week about a benefits report co-written by Disability Rights UK, Citizen's Advice Bureau and the Children's Society. The research says that the slated benefit reforms will penalise thousands of disabled people.

Disability campaigners reached fever pitch earlier this year with protests and warnings, and gradually now we're seeing considered concern from diverse sources with long-established reputations.

Understandably the government are keen to get as many people into the workplace as possible and indeed most disabled people who are able enough, welcome this principle, they want to play a part in building the country, and earn more money for themselves in so doing. But a question mark still hangs over what all these changes will do, how severe the consequences might be ... or maybe even how genius Iain Duncan Smith is for finally breaking the so-called benefits trap that many accept is all too real.

A readers comment at the bottom of the Guardian article asks: Am I wrong in thinking that prison [might] offer a better alternative to disabled people than dying cold and hungry and unnoticed in their homes. All the services disabled people need are under one roof. There is also paid work for prisoners within the system."

On the aforementioned report, the newspaper quoted a DWP spokesman referring to the analysis as: "highly selective".

Elsewhere in the news

Neo-eugenics: DNA info could be very accessible soon (The Telegraph, Friday 13 July)

Nursery labelling one-year-olds 'special needs' raising fears that some are being given tag with no justification (Daily Mail, Friday 13 July)

DNA pioneer James Watson: We could cure most cancers in a decade (Daily Mail, Friday 13 July)

Breast cancer surgery women 'risk more operations' (BBC News, Friday 13 July)

Disabled children four times more likely to be victims of violence: study (The Telegraph, Thursday 12 July)

Concerns over tackling Olympics overcrowding in London stations (BBC News, Thursday 12 July)

Alzheimer's 'early signs timeline developed' (BBC News, Wednesday 11 July)

Social care plans 'simply paper over cracks' (BBC News, Wednesday 11 July)

Minister calls for change in attitude as wheelchair user takes on bus companies (The Guardian, Wednesday 11 July)

Remploy to close 27 factories, government confirms (BBC News, Tuesday 10 July)

London 2012: Disabled artists launch Unlimited Festival (BBC News, Tuesday 10 July)

GB athletics team named for London Paralympics (BBC Sport, Tuesday 10 July)

Refused access: fighting for the right to travel on the buses (The Guardian, Tuesday 10 July)

Social care cap plans 'need funding and timetable' (BBC News, Saturday 7 July)

85,000 Americans went on disability benefit in June (while only 80,000 jobs were added in the same period) (The Daily Mail, Saturday 7 July)

Disabled people: Doing holidays differently

Damon Rose Damon Rose | 12:01 UK time, Thursday, 12 July 2012

Tropical sunset through Palm trees on a beach

For every disabled person who wants to go on holiday, there's a new and interesting story.

Alexa Wilson and Martyn Sibley have very different requirements. Alexa is a mum of two children with learning disabilities, and Martyn is a powerchair user. Their stories prove there is no one-size-fits-all solution to making a holiday accessible.

Speaking on a recent podcast from Ouch!, Alexa told presenters Liz and Rob how she and her husband prepare the children, Toby and Ellie, in advance of a trip.

"We have to start weeks in advance, warning them we are going on holiday and that there is going to be a change in their routine. So we use a system of visual prompts with pictures of the place that we're going - especially with our son Toby who's seven. He has very little concept of time so it's quite difficult. You have to strike a balance between giving them adequate warning that their routine is going to change and the possibility that if you tell them too soon, they're going to be worrying about it for weeks."

Click this link to listen to the full interview with Alexa and Martyn

The children have Fragile X syndrome, a condition which Alexa says "presents a bit like autism".

Self-catering works well for the family and they have returned 14 times to a cottage in Wales that is familiar, safe and has none of the "sensory issues" that a hotel would have.

It takes three and a half hours to get there; mum Alexa says they are lucky as the children both like being in the car but adds: "We do have to listen to the same music over and over again the entire way there." We later discovered this is a six minute long George Michael track, on repeat.

"We tend to take two cars because it gives us a degree of flexibility when we're there because there are some activities that Toby can access that Ellie can't and vice versa. For example there's a swimming pool that Toby loves to go to, it has a wave machine and a little river that goes outside that you slope round on, and he absolutely loves it.

"Ellie is terrified by it because, when the wave machine is going to come on, a claxon sounds and she can't cope. It terrified her the first time she heard it and she literally bolted out of the building in her swimming costume screaming." To solve this, the family split up and do separate activities suited to the individual child.

Complicated it may sound but Alexa maintains it's good for them all to get away.

Martyn has to plan a lot too ... but in a very different way. He says: "I have a mechanical and physical disability called Spinal Muscular Atrophy. I have to go everywhere in my electric wheelchair. I have to have personal assistants with me 24/7 to hoist, help me shower and turn me over in the night time."

A lover of international holidays, Martyn's travels have included: California, New York, Mexico, Australia, Germany and Singapore. To visit all these places he needs to transport his wheelchair and an "entourage" of personal assistants.

As PAs don't come for free, funding a trip can look pretty impossible if you're not rich. The classic young person's approach to travel - that of "bumming" around far-flung resorts picking up bar-work as you go - is understandably not available to a large number of disabled people.

Martyn receives a Personal Budget from his social services which is intended to pay for his daily care needs and assistance. As he'll need care no matter where he is, he creatively negotiates a way of paying for holiday assistants with this money.

He says: "If it's one week abroad there's often a compromise you can come to where you're able to pay the person the budget for that week to do the care. And maybe they still have to fund some of their cost of the flight, but they're going to get a trip abroad for a week."

Wheelchair, check, assistants, check, but Martyn also needs a hoist so he can be lifted safely. So does that mean he has to drag more equipment around with him too?

"When we did a road trip around California, I went with a friend who also has SMA and we took a portable hoist on the plane with us," he explained you get used to the aircraft boarding procedures involved in carting chairs and lifting gear around. "Because we were on the move it was easier to have our own hoist, but, other times I just locate a service provider through the internet, and hire the hoist as well."

Do you do your holidays "differently"? How much planning do you have to do in advance of leaving home? Are holidays always worth doing? Tell us in the comments below.

13 Questions: Former Paralympian, Baroness Tanni Grey-Thompson

Emma Emma | 10:33 UK time, Wednesday, 11 July 2012

In a wheelchair athletics career spanning 19 years from 1988 to 2007, the Welsh-born Tanni Grey-Thompson won 11 Paralympic gold medals for Great Britain and became a household name.

In March 2010, she was made a life peer in the House of Lords, a job which now takes up much of her time. She sits on the non-partisan crossbenches.

On Twitter, as Tanni_GT, the baroness chats freely with her thousands of followers and tweets regularly about all aspects of her busy life. Updates come live from the Lords during crucial votes, from trains where she has given frustrated reports of locked accessible loos, and we get a glimpse of her sometimes less-than-healthy pit-stop eating habits.

As well as working as a feature reporter across BBC TV and radio during the London 2012 Olympic Games, she will play a major part in Radio 5 live's coverage of the Paralympics this summer.

Lady Tanni Grey-Thompson of Eaglescliffe took time out from a stressful house move to answer our 13 probing questions.

My earliest memory is ...
Sitting on the sofa wearing a Welsh bobble hat and scarf, watching Wales play New Zealand at rugby. We had to wear our bobble hats, even when watching at home. My mum was telling me to shout "I hate Batty", who was a very successful player with the All Blacks at the time.

The three words I'd use to describe myself are ...
Stubborn, honest - which gets me into loads of trouble - and driven. When I set my mind to do something, I just keep going until it happens. I like to be in control of my destiny and to feel I'm making decisions about myself. I have got to where I am by being disciplined, working really hard in lots of different areas and making layers of lists.

A little known fact about me is ...
That I eat lots of cheese. I would eat cheese on toast every day, sometimes with tomatoes or brown sauce. Alternatively, I would happily buy a lump of Stilton, Brie or Danish Blue, and have it on its own.

I can't resist ...
Frazzles. Or Quavers. I often go for weeks and weeks without buying a packet of crisps but when I do, one is not really enough.

I want to ban ...
The people who park in blue badge spaces without a blue badge. They see me and suddenly start limping - that is not a fluctuating condition. I did leave a note on an offender's window once, who had conveniently brought their gran out and then left her in the car. It said: "your gran is for life, not just for shopping."

The thing I've done but would never do again is ...
A triathlon. They are really hard and I don't like swimming in a lake where people have peed in the water. We were told to drink a can of cola when we got out, to kill all the bugs.

Before I die I want to ...
See accessible toilets in every shop and restaurant. This can be achieved through having proper legislation to stop businesses getting away with being rubbish.

If I suddenly became able bodied I would ...
It doesn't form any part of what I think about in any day but I would probably go for a walk on a beach. I hate beaches. It is horrible digging sand out of your wheel bearings, getting mucky hands and falling out of your chair.

Someone should invent ...
A method of flying in a wheelchair, like the Daleks from recent episodes of Doctor Who. I don't want one of these chairs that climbs stairs at a metre a minute and takes three people to operate. I want to fly as fast as if I were running.

My ideal dinner guest would be ...
My husband. We don't get to spend much time together so it would be nice to have a meal where we are not rushing around or thinking of other things. Neither of us are good cooks, we eat to survive. Our daughter is a better chef than both of us.

My first job was ...
Working in the office of a contract cleaning company during university holidays. I had tried in vein to get some work but in the end, a mate of my dad offered me the job. It gave me the opportunity to interact with different people and it was nice to do something that wasn't sport.

Being a Baroness is ...
Exciting, weird, strange and I love it! You can change things. I have always wanted to work somewhere in politics, I'm not party political however, so it would have been difficult for me to become an MP.

For disabled people, I want the London 2012 legacy to be ...
Proper inclusion in sport. A disabled person should be able to go to their local club on a Saturday morning to play sport, not to a special club. I'm not just talking about competitive sport; disabled people need proper access to physical activity. At present, participation levels are low and all disabled people need to become healthier and healthier, so that they are able to work and live in a new world where the benefits system is going to be pretty harsh for them.

You can hear more from Baroness Tanni Grey-Thompson on Radio 5 live and across the BBC from late July through to Early September during the Games. Or follow her on Twitter: @Tanni-GT.

News round-up: Pistorius to compete in Olympics and Paralympics

Emma Emma | 11:28 UK time, Friday, 6 July 2012

Newspaper front pages

It was announced this week that South African sprinter, Oscar Pistorius, will represent his country at London 2012 in both the Olympic and Paralympic games.

Known as the Bladerunner due to the carbon fibre legs he wears while competing, Pistorius is set to be the first double amputee to run at the Olympics, having been selected to compete as part of South Africa's 400X400 relay squad.

He didn't obtain good enough times to qualify for the individual 400M event but is now permitted to take part in that too; a back door passport because he's now in the relay squad.

Oscar Pistorius hit the headlines and became one of the world's best known disabled athletes after it was questioned whether he should be allowed to run against able-bodied competitors. He was cleared in 2008 when an IAAF ruling that his blades gave him an unfair advantage was overturned by the Court of Arbitration for Sport (CAS).

Some still question whether he should be allowed to take part in the Olympics. As
Jim White reminds us in The Telegraph
: "There are those who maintain that the fact he runs on a pair of blades constructed of carbon fibre rather than flesh and bone makes it inappropriate for him to be at the games."

Pistorius will also compete at London's Paralympic Games in the 100m, 200m, 400m, and 4x100m relay.

Elsewhere in the news

There are some really meaty and interesting stories in disability news this week, take a look at our selection and feel free to leave comments

'Most realistic'
robot legs developed
(BBC News, Friday 6 July)

Gary McKinnon's extradition case adjourned for medical report (BBC News, Thursday 5 July)

Man and robot linked by brain scanner (BBC News, Thursday 5 July)

'Help needed' for people suffering from skin conditions (BBC News, Thursday 5 July)

Pistorius doesn't aim to just take part. Most disabled people do
(The Guardian, Thursday 5 July)

up jobs in NHS to students with learning disabilities
(The Guardian, Thursday 5 July)

Remploy workers vote to strike against factory closures (BBC News, Wednesday 4 July)

Was Jimmy Carr right about the Paralympics? (BBC News Magazine, Wednesday 4 July)

denied right to independent mental health advocates
(The Guardian, Wednesday 4 July)

Advice buckling under volume of calls over new benefits
(The Guardian, Wednesday 6 July)

disabled people failed by estate agents and property websites
(The Guardian, Wednesday 4 July)

you've met one person with autism, you've met one person with autism
(The Independent, Wednesday 4 July)

genes linked to arthritis could lead to new drugs: experts
(The Telegraph, Tuesday 3 July)

employing disabled people is the most difficult form of social enterprise
(The Guardian, Tuesday 3 July)

Not if defendants can't engage fully with the trial
(The Guardian, Saturday 30 June)

New brain scanner helps paralysed people spell words (BBC News, Friday 29 June)

Caroline Jephcott: Nine top tips from a physically disabled parent

Guest Guest | 16:06 UK time, Wednesday, 4 July 2012

Caroline with baby Christopher and assistant dog Yasmin

Caroline Jephcott has arthritis and is mum to 17 month old Christopher. Here she writes about the online support, strategies and equipment, and her clever assistant dog named Yasmin, which make being a mobility impaired mum easier.

Growing up with a severe disability which gave me deformed joints and left me small in stature and weak, I have learned to cope with all the situations life throws at me. My husband has arthritis like me, and together, he and I are skilled at adapting every day objects from conventional stores to meet our needs.

Having a baby didn't worry us but, with very little support from external sources either during or post pregnancy, we did have to get even more creative than usual.

I couldn't go to anti natal classes as they were all up stairs. So instead, I went on to the parenting website Mumsnet and found comradeship with disabled mums and dads in a similar situation on the talk forums. We chatted online about all aspects of pregnancy and parenthood and exchanged ideas on how to prepare for the babies arrival.

This information is not easy to come by so here are some of the tips we picked up along the way.

1. We realised that our baby's clothes would need to be easy to get on and off. If, like us, you find poppers difficult, I would recommend going online to places where second hand, good condition baby clothes are sold. This way, the poppers have already been worked by someone else and so can be managed more easily.

2. Babies come with lots of stuff. We didn't want our house to look like a hospital ward, so instead of going for specialist disability-friendly equipment, we went to the high street.

We found the simplest to use buggies are often the cheapest. We particularly like the umbrella-style models, which flip out. The more thin and plastic the levers are, the easier they are to move. The lighter the better for us.

3. For meal times, we chose to have swivel dining chairs and a travel high chair, so that once he was eating solid foods, I would be able to sit and angle the baby to an easy feeding position.

4. In the beginning, we mainly put Christopher in his carry cot downstairs during the day, so that my husband and I didn't spend all our time going up and down on our stair lift to put him down for naps.

5. We initially struggled with bathing, so a plastic tub of warm water and J cloth came in handy for washing him on the bed.

6. Christopher was already 5 months old when an occupational therapist visited our home. Among her positive suggestions was a referral to REMAP. Remap is a free nationwide service of volunteer engineers who adapt almost anything for you. We gave them the cot, which needed heightening so that the base would always be at a level where I could reach the baby. REMAP had the cot for just two days before returning it on taller legs. It continues to work wonderfully.

7. At 17 months old our son crawls and coasts round the furniture. He has more physical strength now than either of his parents. Luckily, there is another member of the household on hand to help.

I have a fantastic assistant dog called Yasmin who has been trained by the charity Canine Partners, to help me carry out daily living tasks. Yazmin now knows over a hundred baby related words. She tidies up after my son, putting toys in his toy box. If she sees him heading for stairs, she will cause a diversion by lying down in front of him. She is also a great friend to Christopher who will be an only child, as pregnancy has taken its toll on my joints.

8. Our activities with Christopher are gentle. We read to him and do finger painting. Apps on tablets like the iPad have also opened up a whole new world of kids games and activities, useful for parents living with a disability and who are unable to run around.

9. Christopher laughs lots and talks lots! Everyone comments on his calmness which I put down to a structured routine. As part of that routine, we go out once a week, an aspect of parenting which I still find challenging. I have only recently been able to take him out in the car independently, using a car seat which swivels, making it easier for me to lift him in and out. But I am in the process of sorting out direct payments so that I can employ someone for a couple of hours a week to help with getting out more often.

My husband and I rise to every challenge and smile and get over the hurdles. That is what makes us great parents!

Caroline writes a blog for Mumsnet called DisABLEd Positive Parent

Have you picked up tips and tricks along the way which might work for other disabled parents? Add them to Caroline's list in the comments below.

Ouch! disability talk show #87: Planning holidays, and military rehab

Post categories:

Vaughan | 11:38 UK time, Monday, 2 July 2012

Liz Carr and Rob Crossan, hosts of Ouch! disability talk show

A mum of two children with learning disabilities and a travel-mad powerchair user tell us their holiday complexities. Plus Clarence Adoo and Charles Hazlewood from the Paraorchestra, and the ex-military Paralympians who use sport for their rehab. With Liz Carr and Rob Crossan.

Download Ouch! as a podcast
Listen to the show on the BBC News website
Read a transcript of this show

• Can going on holiday ever become just too much trouble? Liz and Rob read your Facebook and Twitter responses. Plus, Alexa, mother to two children with the genetic condition Fragile X who rely on routine and experience sensory overload, and Martyn, a powerchair user with a serious case of wanderlust, talk about their complex and lengthy holiday prep.

• Ex-trumpet player Clarence Adoo is paralysed from the shoulders down and is a member of the UK Paraorchestra, an 18-strong disabled music ensemble. He chats about learning to master the electronic head-operated wind instrument invented just for him. And founder Charles Hazlewood, the conductor, joins by phone to explain how this unique orchestra came about.

• Tony Garrett speaks to injured soldier-turned-athlete Derek Derenalagi. And Rob and Liz find out more about how the military and the Paralympic movement are working together to help disabled ex soldiers reach their sporting potential.

• The Beathovens are a Wirrel-based rock band made up of people with autism. We end the show with Me, Myself and I, their song about life on the autistic spectrum.

Related links

Links to people and information featured in the latest podcast from Ouch!

Martyn's Travel advice: PAs, powerchairs and plenty of planning
Twitter: Follow Alexa, mum of two children with Fragile X, who talked to Liz and Rob about holidaying

Latest Team GB Paralympics news - BPA website
Battleback: MOD sports initiative helping injured service men and women through rehab and beyond
Jimmy Carr: 'I thought my Paralympics joke was totally acceptable' (The Guardian)

Clarence Adoo: Disabled musician and ParaOrchestra member
The British ParaOrchestra

YouTube: Me, Myself and I - The Beathovens' autism song

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