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27 January 2015 Last updated at 07:36 ET

Deaf clubs versus smartphones

William's phone with the exclamation mark on the screen

Smartphones have created a more accessible world for deaf people but are they killing off their much-loved deaf social clubs?

Last Christmas, I destroyed my phone. I connected it to my laptop and executed a command which wiped its entire memory and operating system, leaving nothing but a flashing exclamation mark on its screen.

As a deaf person, the only thing I don't use my phone for is making calls - everything else about it gives me incredible access to the world around me.

In the past, when travelling by train, I would miss announcements of a last minute change of platform or delay. Now I can use an app which not only tells me the train time and platform it's departing from but does so before it appears on the station monitors. Now I'm first on the train and in a seat before the stampede starts.

Instead of having to ask a stranger to call me a taxi after the last bus has gone, I can order one for myself with a few swipes of the screen.

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Maybe deaf clubs of the future exist mostly online”

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Video chat apps let me talk to family and friends face to face so I can lip-read them or sign with them. On mobile, Facebook allows me to do this now too.

And when I first joined Twitter in 2009, it felt like being in a huge pub conversation which I could follow easily, and participate in on an equal footing without misunderstandings to make me look stupid. By contrast, a real life pub is a place where conversations are hard to hold, with lots of music, background noise and not enough light to lip-read.

My phone has become increasingly important with a proliferation of clever new services available, and lately... perhaps a little too important.

Rather than try to arrange to meet a friend for a chat, I've noticed I'm now more likely to have a brief online interaction with them. And instead of sharing my innermost feelings face-to-face with someone who matters, I'll post them up on an anonymous messageboard and crowdsource opinion - an annoying keyboard hero who wouldn't have those kinds of conversations offline.

I'm becoming too reliant on my phone, at the expense of everything else.

William in the pub holding his phone looking morosely at it

Being phoneless for two weeks over Christmas led to me making more eye contact with people, having longer conversations without nagging vibrations in my pocket, and I found I could hold onto a thought for longer than a few seconds. I felt a better person - and it made me think about the downside for deaf people who were unusually sociable animals before this apparent golden age of access.

Before technology made things easier, sign language users would drop in to deaf clubs so they could have conversations with those who spoke the same language as them. Always there, they are sociable, family-oriented places, a bit like a pub with extra benefits. These days, people are vexed because they are closing down rapidly They're not surviving because it's now easy to organise their own smaller get-togethers. Without text or video chat, in the past you would have to send a letter to arrange a meet-up with a deaf friend and just hope they turned up at the right place on the date and time you suggest. It sounds ridiculously basic but nowadays technology allows deaf people to organise get-togethers easily - and it doesn't have to be in a special club any more.

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I'm also starting to wonder whether Twitter and Facebook are holding the deaf community back”

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I'm also starting to wonder whether Twitter and Facebook are holding the deaf community back and, in reality, not giving them the voice they think they now have. Deaf people have to engage in a lot of political lobbying, but is liking a Facebook campaign or signing an online petition as effective as we hope?

Also, deaf people post BSL videos on Facebook and can make their points very effectively in their first language. These videos are shared with other sign language users, but are their thoughts understood by the wider online community? There are few BSL users around and so without a transcript in written English - probably not.

Technology is changing everyone's lives - faster than anyone really understands. It's probably too late to go back to the old ways of a central deaf club where everyone could meet to exchange stories, and find out the latest news. Maybe deaf clubs of the future exist mostly online, and everyone will get their news from status updates and newsfeeds.

As for me? I'm walking to work every day now, instead of staring at my phone on public transport. At lunchtimes I leave my phone on my desk and try to talk to other people face to face. I feel better as a result. But I'm still a slave to my phone - and it's time I did something about it.

William Mager is the series editor of See Hear, the long-running programme for the deaf community. It returns to BBC Two on Wednesday 5 February.

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Charities aim to get learning-disabled children playing

Ellie and Toby on a roundabout Ellie and Toby both have learning disabilities

Parents of disabled children say finding fun things for them to do is a full-time job. Could a new TripAdvisor-style site solve this?

"We went as a family to a water park which has a warning hooter which goes off to let you know the wave machine is about to start," says Alexa Wilson. It wouldn't cause problems for most families but her children, Ellie 13 and Toby ten, both have Fragile X syndrome - an inherited condition which comes with learning disabilities.

Ellie doesn't like unexpected loud noises and, when the klaxon sounded she got up and ran out and refused to return. "This is just one more place we now can't visit," says Wilson. "Had we known about the klaxon, we could have warned her."

It's this sort of extra detail that SENDirect hopes to provide. It's a new review website aimed at families with children who have Special Educational Needs or Disabilities (SEND).

Stan Palmer is 12 and has Down's syndrome. His dad, Steve, says most activities don't advertise that they're inclusive, even if they are, which creates uncertainty. He says more effort needs to go into making it obvious so that parents can make the right choices.

"If we just turned up at a mainstream rugby class with Stan, it just wouldn't work because he needs extra attention," he says. "Or if he was typically developing he might say 'I'm going to paint a picture now', but we have to help and guide him into play."

Palmer currently finds out about inclusive leisure activities for his son in a "very ad hoc" manner via other parents of SEND children, or on social media.

Stan at the horse stables Stan's dad Steve says it's difficult to find suitable activities for him

According to the consortium of nine charities behind the new website, Palmer is not alone. Useful information about inclusive family activities and many other important services is scarce.

In a recent survey by the consortium, three-quarters of families said they have difficulty finding information about what services are available to them.

"We developed SENDirect in response to families telling us that finding vital local services for any child with additional needs is over-complicated, confusing and choice is severely limited," says Jolanta Lasota, chair of the consortium and Chief Executive of member charity Ambitious about Autism.

Stan rowing a boat Stan's dad says he needs extra attention when playing

The new website allows visitors to search by postcode, price range and age suitability, for everything from health services, to specialist equipment, to childcare. Family activities come under the category "fun stuff".

For Wilson it is important that her children get to as many leisure activities as possible.

"Life skills and social skills are more important for Ellie and Toby than straight-forward education," she says, "because building up friendships and social skills is what is going to help them survive when we're not around to look after them."

Functional services have traditionally been prioritised for disabled people but Lasota says that being able to find and use leisure resources might reduce a need to use other expensive specialist services - such as mental illness facilities.

"We know that isolation leads to mental health difficulties and therefore those people would need more access to mental health services," she says. "What we're trying to do is break down that isolation, so that families are included in their communities and don't feel so alone."

Hundreds of parents were involved in the development of SENDirect. They helped decide what sort of information they would find useful when researching services. Users can rate each service based on their experience, which will then be visible for all to read. This is something Wilson welcomes so she can do her homework and avoid failure.

"It's taken trial and error to find out which cinemas and theatres are right for Ellie." She says lots of "fun things" have an accessibility statement but usually this just means access for wheelchair-users. "They don't really think about people with learning disabilities," she says.

Shane in a sensory room Shane in a sensory room

Wilson says that if she heard about a cinema that has a more tolerant attitude to a little noise then she would go there. She observes that if parents are less anxious then in turn their children will be more relaxed too. "We have had bad experiences in theatres where staff were unhelpful to the point of rudeness," she says.

Sixteen-year-old Shane Goncalves has cerebral palsy, is blind and has a severe learning disability. His mum, Sam Bergin-Goncalves, wants nothing more than for her son to reach his full potential, be independent and live a life with rich and varied experiences - as any parent would want.

She has an interesting thought on how sharing information like this can lead to even more positive collaborations. She says she's hoping that SENDirect will give her family the ability to link up with others to pool money from their personal budgets - funding given to them by social services - and widen the opportunities available. "It would be good to approach providers with ideas for activities that my son and his friends would like to do," she says.

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'The year I lost my limbs was the most brilliant of my life'

Alex in hospital with Lucy and his son

In a few weeks Alex Lewis went from being the owner of a pub, to becoming critically ill and a quadruple amputee. Yet he still describes the past year as the best he's ever had.

"There are days when I wake up and I think gosh my shoulder hurts, or wow my stumps are sore, but I just keep on pushing forward," Alex Lewis explains.

He's on speakerphone as he is unable to hold a phone now he has no hands.

As well as losing his limbs, Lewis also lost his lips and nose. Surgeons have since grafted skin from his shoulder into lips leaving him, he jokes, looking like a Simpsons character and with a nose that constantly runs.

The positivity 34-year-old Lewis, from Stockbridge, Hampshire, has found over the past year has been remarkable for those close to him, and he says he feels happier now than before his illness. Many would find it hard to believe, but he says that great things have come of it.

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It is incredible what the human body is able to overcome”

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"It's made me think differently about being a dad, a partner, a human being," he says, and a new charity set up in his name has given him a huge impetus to help others. Despite this positive attitude, he can't do a lot of the things he once loved, like cooking and playing golf. He and his partner Lucy have lost the pub they once ran.

'Survival chance of 5%'

It was in November 2013 when Lewis thought he had "man flu", but when he spotted blood in his urine, followed by blotchy, bruised looking skin he knew something more serious was happening.

It turned out to be a streptococcal infection (type A) and he was rushed into hospital in Winchester on 17 November 2013. The infection penetrated deep into his tissues and organs, and triggered blood poisoning, or sepsis, a life-threatening condition that causes multiple organ failure.

Alex in hospital with a green gauze over his lips Alex Lewis's lips were completely destroyed by the infection

The skin on his arms and legs, and part of his face had quickly turned black and gangrenous. For his family and friends, at his bedside every day while he was on a life support machine, it was shocking to see.

But for his son Sam, just three at the time, it looked merely as though Daddy was covered in chocolate.

Lewis's infected limbs were starting to poison his body and, as soon as he was off life support, he was told he would have to have his left arm amputated above the elbow.

He says he felt no sadness or emotion at the news because the doctors were incredibly matter-of-fact. "It was a case of 'this arm is killing me so it has to go,'" he says.

Alex with Lucy and his son before he got ill Lewis with his family before his illness

It was the second week of December and although he had lost an arm, he wasn't yet out of danger. His damaged legs were beginning to poison his body and, in quick succession he had two more operations to amputate first one leg, then the other, leaving him with just one limb - his right arm.

"I processed every amputation individually," he says. "Part of me thought let's just get this process done so I can get out of hospital and home." But ultimately he says he didn't have much time to think.

His right arm had been damaged too, but doctors thought there was a chance of saving it. It took 17-and-a-half hours in an operating theatre on Christmas Eve 2013 to rebuild it. Surgeons stripped the arm to scrape the dead tissue away. Then they took 16.5ins (42cm) of his left shoulder blade, along with the skin, muscle, nerves and tissue and grafted it on to his right arm.

Having lost three limbs already, use of that remaining hand was seen as crucial by doctors and Lewis was desperate to do what he could to keep it.

Alex wearing his four prosthetics Lewis says his grafted lips make him look like a Simpsons character

"I learned along the way that all the quadruple amputees I've met say the one thing they'd kill for is a hand," Lewis says. "It means you can still do your daily stuff, get a drink, write."

But the damage proved to be too severe and, one night, while he was asleep, Lewis rolled over and snapped the arm in two.

"My hand was dangling down by my elbow," he says. His partner Lucy was devastated, and imagined a far harder life for him now he had no limbs - but Lewis says he didn't care.

"There is no point waiting for five years trying to get an arm working again," he says. "I think psychologically it would have been much more damaging to wait all that time and then lose it."

Find out more

  • Alex Lewis was interviewed on the BBC World Service programme Outlook
  • Outlook airs Mon-Thurs
  • Tells personal stories from around the world

With all four limbs amputated, Lewis had to learn how to go about his new life. He could no longer get himself up and washed and dressed in the morning, so had to get used to a carer coming in once a day - but first on his to-do list was learning to walk.

He began a 10-week walking course at Queen Mary's Hospital in Roehampton but after just two weeks he surprised everyone by successfully walking on devices called "rocker pylons" - prosthetics on a short pole, with a large rocking foot.

He's been walking on them for almost three months now and says he is making great progress but still finds them awkward. "Going up stairs is difficult because of the shortness of them," he says, "and different terrains are hard."

He has chosen to use prosthetic arms and currently uses ones with hooks. His attitude is: "I might as well try what is best and then make my mind up."

Alex during physio Physiotherapy is still an important part of Lewis's life

The prosthetics let him do things like open a fridge, pick up a drink or open a bag of sweets, actions which aren't possible using his stumps.

He says it still feels like he's living in a dream world and that it's all "a bit alien". Catching sight of himself in a mirror feels uncanny, he says, because the body he had become used to for 33 years has changed beyond his recognition.

"It can be upsetting but I just think it is incredible what the human body is able to overcome," he says.

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Why are so many disabled roles played by non-disabled actors?

Eddie Redmayne as Stephen Hawking

Eddie Redmayne has been nominated for an Oscar for his portrayal of Stephen Hawking in A Theory of Everything, but should the role have been played by a disabled actor?

It's become almost a running joke that if you want to win an Oscar, play a disabled character. Daniel Day-Lewis took the award in 1989 for his portrayal of Christy Brown, an Irish writer born with cerebral palsy, in My Left Foot, and the year before Dustin Hoffmann scooped best actor for his role in Rain Man playing an autistic man with the ability to count hundreds of objects at once.

It's even been suggested by film critics that playing a disabled character is a sure-fire way to secure at least a nomination, and probably a win. Sixteen percent of all the best actor and actress awards have been portrayals of disability or mental illness, after all.

But some disability campaigners question why these roles are not given to people with disabilities or mental illness, who - they say - could portray the nuances of living with such conditions more accurately.

In a recent Guardian article Frances Ryan said that "while 'blacking up' is rightly now greeted with outrage, 'cripping up' is still greeted with awards". She asked whether there was actually much difference between the two, arguing that in both cases actors use prosthetics or props to alter their appearance to fit the role and perpetuate under-representation in the industry.

RJ Mitte, who played Walter White Jr in Breaking Bad, and has cerebral palsy, said in an interview with BBC Newsnight that nobody should be denied the chance to play a disabled role. "The issue it comes down to," he says, "is an accurate and honest portrayal of what that disability means to so many millions of people."

So did Redmayne achieve this portrayal of life with motor neurone disease (MND)? Sarah Ezekiel, who has MND says he did. "I still can't believe how well he played the part," she says. "I never thought that an actor could replicate what MND does to the body, but he did it perfectly."

A still from Rain Man Dustin Hoffman played an autistic savant, Raymond Babbitt, in Rain Man

In the film, Redmayne has to convey the transition from non-disabled to disabled. Because of this, some have argued he is perfectly placed to play the role - a disabled actor, the argument goes, could not have played Hawking before he got MND.

But for Hollywood Reporter film critic Leslie Felperin, the issue is a deeper one about identity politics. She says there has been understandable disgruntlement across the years with white actors playing black roles, but that has moved on to become an embarrassment and not acceptable: "If they were making Gandhi now, they wouldn't cast Ben Kingsley, they would find an Indian actor."

For her it would be more authentic to have a disabled actor playing a disabled role. But in some cases, is it feasible? An actor with the same level of disability as Raymond Babbitt in Rain Man would not have been able to play the role.

Mitte is a good example of somebody who managed to break the mould and play a character who has the same disability as himself. However his personal form of cerebral palsy is not as pronounced as his character's. There was still individual interpretation, and a director's vision involved - part of the acting process for all actors, disabled or not.

The problem, says playwright Christopher Shinn, is that there are an incredibly limited pool of disabled actors who are big box-office draws, and not having a recognisable name in your cast is nothing short of making a doomed film.

But why is there such a small pool? The numbers of disabled parts are smaller than the number of disabled actors so competition is rife. Film critic Callum Madge also argues that a key reason why disabled actors don't get cast is because the industry is a shallow one, with directors regularly choosing not to cast someone because of their height, build, hair colour or any other feature they don't want in their production.

If the top roles playing disabled characters are going to non-disabled actors, whatever the reasons behind that decision, it is restricting the opportunities for disabled actors, says blind film critic Tommy Edison.

The onus is put onto disabled people to push past the criticism dealt to them, perhaps unfairly, in the industry, he says. For Mitte this is just part of the course. "It's hard to get a role in this industry no matter what, disabled or non-disabled, there's always someone better looking or with a better disability," he says. "What it comes down to is confidence, when you have people with disabilities they don't normally have a lot of confidence."

Your feedback

A selection of your comments about this article, taken from Twitter.

Richard Ashton: "Yes! Only Gay actors for gay roles, no young actors to play older, no thin to play fat and only dead play those deceased."

HarryBojangle: "Let's put it this way, who's playing the new Annie and who's playing Egyptians? Etc etc. I think you have your answer."

Dannette T: "Yes. Otherwise it looks like a pisstake."

TheEntitled Gamer: "Should people with real mental illness play parts in Shakespeare tragedies? ... Where do u draw the line? Is it ok for non soldiers to play soldiers in films? Is it ok for adults to voice the parts of children?"

D posted: "Why are so many disabled roles played by non-disabled actors? Because it's acting. Get over it."

GeorgiEvans-Phillips: "The role wasn't disabled throughout. A disabled actor may have found the beginning of the movie too challenging."

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What are you doing on Disabled Access Day?

Euan with a big crowd of friends Euan Macdonald (front, left) runs a website that rates the accessibility of different places

A new day encouraging disabled people to go out and try something new has been launched, but is this easier said than done?

Though an access symbol might appear on the website of a venue you want to visit, disabled people and their families don't tend to take it for granted that it is accessible enough for them. If you've visited a cafe, playground or sports centre and find it to be good, then you're more likely to keep returning so you don't have to do yet more research ... but that can make life a bit repetitive.

"We got bored of always meeting friends for a drink in the same few pubs, just because they have a ramp and an accessible toilet," says Kiki MacDonald, whose brother Euan uses a wheelchair due to motor neurone disease. "But sometimes it's just easier to go to the same places over and over, because you know that they are accessible."

The two run Euan's Guide, a website and app where disabled people can upload their reviews of public places for the benefit of others, and who have kick-started the idea of Disabled Access Day.

Macdonald says she and her brother wish they could be more spontaneous: "It would be lovely if just off the hoof, we could go somewhere new."

Well-known problems like steps aren't an access barrier for Barbara Wilson who is blind but she still tends to go to the same café in the small Northern Ireland community where she lives. This is because she was taught the route by her guide dog instructor.

The one-on-one learning, coupled with practice, means she knows exactly where the tables and chairs are and can easily place her order at the counter. But she also feels comfortable there. "The staff there know me and so will be less inclined to speak to me like a three-year-old," she says.

When she tries somewhere different, her anxiety levels become very high. She says a walk from the door to where she thinks the counter might be, can feel like a hundred miles and she imagines everyone is staring. "When you reach it you feel like you've just climbed Mount Everest - and then you have to find the door again on the way out."

Euan with a big crowd of friends

If disabled people do decide to try somewhere new, particularly those who use wheelchairs, they tend to plan meticulously in advance. Experience has taught them that if venues do publish access information, it doesn't tell the full story and can lead to disappointment.

Powerchair user Fleur Perry takes no chances. "Before I go to a hotel or restaurant that I haven't been to," she explains, "I give them a quick ring and say this is what your website says but is there anything else we should know? I also travel well prepared and carry a set of portable ramps in the car just in case."

No matter what your impairment or access needs are, the Disabled Access Day on Saturday 17 January has been set up to encourage all disabled people to break out of their routine and try somewhere new.

Though people are being encouraged to try whatever they wish, there are over 200 events and freebies all over the country that they can take advantage of and Cafe Nero is giving away free drinks in 170 of its stores on the day. London's National Theatre is allowing disabled people back stage, and hotels are opening up their accessible rooms for viewing.

It is hoped that disabled people who do try something new will start conversations on social media about the good and bad access they find, and add comments to review websites. The aim is to let more disabled people know about places they can go, and to encourage more companies to make their businesses more accessible and show off the access they already provide.

The idea for the day came from one person's positive experience of a local "try a bus" event. Paul Ralph, a powerchair user from Edinburgh, had always thought public buses were inaccessible before he attended these sessions aimed at disabled people.

Kiki and Paul at London Bridge Paul Ralph has found confidence recently and now regularly gets the bus

"It was great to be able to try getting on and off the bus and manoeuvring into the wheelchair space," says Ralph, who was given the opportunity to try these things with no time limits alongside other disabled people. "It was equally important to be able to ask questions about how the ticketing worked and about bus stop layouts."

Confidence restored, Ralph now travels frequently by bus and goes to many places he would not have previously gone. He contacted Euan's Guide with his story and says: "We thought that it would be great to widen that experience to other places and facilities so people could try them out without feeling under pressure, and in the knowledge there were staff on hand to help and answer questions."

People who have pledged they will go out on that day have been sending messages to Euan's guide via their website.

One person commented: "Pleased to get out and about with my disabled daughter, her quality of life is much improved if we go places and do things!"

"My partner and I are both disabled and will go to the cinema on Saturday. It will be the first time in eight years," commented another.

Are you doing anything for Disabled Access Day? If so, what and why? Leave a comment below.

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How do blind people put on make-up?

Cara Gibbons 'Keep it simple,' is Cara Gibbons's advice

Putting on make-up is tricky enough if you have practised in front of a mirror for years. But how do blind people do this most visual of things?

"I use a brush, do five swirls across my blush and tap it to remove the excess," says Christine Ha in a YouTube video which shows how she applies make-up without a mirror. Ha is blind and received much attention after becoming the winner of the US series of Masterchef in 2012. "I smile to find the apples of my cheeks, then lightly brush [the blush] on from the apples to my temples."

"Like my cooking," Ha writes on her blog, "it all comes down to sense of touch and lots of practice."

She lost her sight slowly as an adult and had to relearn how to make herself up. With eyes, she says, "Once you feel the brush on your lashes, that's when you know to start stroking the mascara on." Becoming familiar with the length of the mascara wand beforehand, helps her to gauge the approach towards her lashes. Some feel that a shorter wand, like a sample-size one, makes it easier to apply the make-up accurately.

If you can't see, applying make-up is not simply about working at it until you achieve the look you want. It's an exercise in trying to look your best using your sense of touch and methodically counting the number of brush strokes or finger swipes to ensure an even coating.

Blind people develop innovative ways of doing daily chores. If something accidentally drops on the floor, for instance, the best way to find it is to systematically sweep hands in a wide circle to make sure no part of the surface is left unexplored. A similar method can be used for applying foundation.

Methodically does it

Visually impaired fashion blogger Emily Davison, who was on this month's Ouch podcast, puts her make-up on in front of a "very large magnifying mirror which is freestanding", to take full advantage of her remaining eyesight. She says eye make-up gives her confidence because it takes the focus away from how they look and from that often asked question: "How much can you see?"

Christine Ha shows how to put on mascara and blusher

As well as clothes tips, she also gives make-up advice to her readers. For eye shadow, she says, you've got to resist the natural urge to use your fingers, adding: "You will never achieve as much definition as you would with a brush."

People who have never been able to see need to be shown some real basic techniques, and to learn from others before practising on themselves. Davison gives instructions like: "Place your index finger on the outer corner of your eyelid and pull it slightly so that the eyeliner glides smoothly across the surface." She urges visually impaired women to avoid liquid eyeliner and instead opt for the more crayon-like products as they glide on smoothly and dry quickly, which helps avoid smudging.

Eyeliner can be tricky to put on without sight, because you experience little sensation in your eyelids, making it difficult to feel how it has been applied. Some blind people get liners permanently tattooed on for this reason. Lips are more sensitive and so lipliner is easier to do.

Davison says that "blending in make-up is particularly important for blind people", who can't see where lines have appeared between colours, or where foundation ends and skin or hair begins. If make-up is done well she believes it helps to kill off any ideas people might harbour "that blind people don't know what they're doing."

Emily with make up on her eyes. She has brown eyeshadow and black eyeliner to a point and mascara. Davison says make-up draws attention away from the fact there is something wrong with her eyes

Cara Gibbons lost her sight suddenly through illness at 19. She started wearing make-up again in her 20s, when family told her that she looked pale and tired.

She has a secret weapon for avoiding a common lipstick problem. When it's on and smudges have been blotted with a tissue, she says: "I put my finger in my mouth and pull it out. This takes any lipstick off the inside of your lips, that could otherwise end up on your teeth."

She says that for clothes, hair and make-up, having at least one trusted, honest person to rely on is vital. "My friends are happy to check whether there's eye shadow on my cheeks or if I have managed to apply my make-up evenly, but they are much more subtle than mum and my sister, who will say straight out if something looks horrible on me," she says.

But she doesn't live with them, so her motto when going it alone is "keep it simple". She asks at make-up counters in shops about which foundation suits her skin tone and says that "for eye make-up, I stick with browns and creams, which I think suit everyone".

While Gibbons plays it safe, Emily Davison likes to change her make-up with the seasons. "I wear coral lipstick in summer," says Davison, "and plums in autumn and winter." She says that you can get seasonal changes and trends right without sight, by reading fashion blogs and new product reviews, "and talking to lots of different make-up counter consultants until you find one who wants to help rather than give you the hard sell. Take it from somebody who has bought lots of make-up and regretted it."

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Talk show 115: Fashion, jobs and more

In the studio

This month: blind people and fashion, guerrilla ways to get a job and disabled role models. Guests academic Tom Shakespeare, disability recruitment advisor Tracey Abbott and blogger Emily Davison.

With Rob Crossan and Kate Monaghan.

How to listen

PDF download Read a transcript[157kb]

More about this month's guests and discussions:

  • Academic Tom Shakespeare presents a five part series challenging stereotypical ideas about creativity and disability for BBC Radio 3. Read more stories about disabled achievers on his blog.
  • Tracey Abbott is a recruitment advisor for the Business Disability Forum. Follow her tweets.
  • Emily Davison is a blogger at Fashioneyesta who writes about fashion and sight loss.
  • Learning-disabled band The Fish Police play out this month. Watch the video to their song Coco Butter.
  • Plus disability campaigner Stella Young is remembered.
Emily Davison in the studio Emily talks us through her fashion choices

For other audio clips from Ouch, go to our audioBoom channel.

Producer: Damon Rose.

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The genius of disability

Tom outside the WHO offices

Academic Tom Shakespeare thinks it's important to celebrate the successes of disabled people, past and present. Here he explains why.

A free-thinking poet with visual impairment, a painter with learning difficulties, a sculptor with schizophrenia, a painter with cerebral palsy, that's what I've been talking about on Radio 3's The Essay this week.

Looking beyond the obvious names like Henri de Toulouse-Lautrec and Vincent Van Gogh, I've been exploring some of the more obscure figures from the past and present. For me, the stories are fascinating. But maybe they also offer role models for today's disabled people, whether they have artistic leanings or not.

The world is full of images and narratives of disability and despondency - from tragic diseases and disasters, to the problems of poverty and social exclusion. I think it's important to celebrate the achievements disabled people have made over the centuries, and which many continue to contribute today.

The stories I have found show that disability is no bar to success if an individual has talent and drive, and probably a fair share of luck. They also show the contexts people need to live in in order to achieve, and more importantly, make us think about how we could remove barriers.

Bryan Pearce was an artist with intellectual impairment from Cornwall. His story shows that if you are in the right milieu, it helps. For most of the twentieth century, there was a colony of painters in St Ives. Pearce went to the local art school, and was supported by a very loyal mother, who gave up her own painting career to help him. Surrounded by other painters, he simply fitted in. In a close-knit community, people would look after his interests and ensure that he could carry on living independently, even after his mother died.

Disabled people are not just their obvious impairments. Lucy Jones, a contemporary painter with cerebral palsy, told me that for her, dyslexia was a bigger obstacle than her mobility problems. Only when she was diagnosed, and received the extra help she needed, did she have a chance of passing her exams.

Jones also reminded me of something else: many disabled people don't actually want to be classified as disabled. She has always fought to be taken seriously as an artist, full stop. Increasingly, disability themes do enter her work, particularly in her striking and colourful self-portraits. But she exhibits her work in mainstream galleries and settings, and refuses the disability art label.

In her TED talk last year, Stella Young - who sadly died in December - criticised the way that disabled people are often praised for minor achievements like simply going to school or doing something, rather than nothing. That's because expectations of us are so low. But we can ourselves feel content if we achieve a basic outcome - getting a job or having something exhibited or published online. Surely we should push ourselves to do better and achieve more.

Of course, those celebrated artists who continued working into old age - Goya, Matisse, Klee - remind us of something else. Disability comes to most of us in the end, like it or not. But it doesn't have to mean the end. We might have to adapt.

Lucy Jones in her garden Lucy Jones wants to be acknowledged for her art, not her disability

Matisse moved from painting to the medium of cut-outs after losing his mobility in surgery to remove cancer in 1941. It was impossible for him to paint freely as he had done before so he turned to the decoupage technique, getting an assistant to pin and re-pin painted shapes to his wall until he was satisfied with the effect, creating undersea creatures, stars, and abstract compositions. It is still possible to produce something beautiful and memorable, and we should have higher expectations of older people with disabilities. Over half a million people visited an exhibition of Matisse's cut-outs in 2014 at the Tate Modern.

It is too easy to think that ageing-related impairment is normal, that retirement from public life is inevitable, and that it's time to give up.

The stories I tell on BBC Radio 3 come from my website, where there are biographies of more than 50 obscure and memorable disabled people from different cultures and different walks of life. My dream is that a young person with a disability - or their parent or teacher - will read the website and be inspired to think big, and not settle for less. Just like gay people or black and minority ethnic people or women, it's important for today's new generations to learn from the struggles of those who have gone before.

Find out more

Radio Three heads

The final episode of The Essay: The Genius of Disability is on Radio 3 on 09 January at 22:45. Catch up on the iPlayer.

Another important lesson is about what it takes to achieve. Almost all of the people on the blog succeeded because they had staying power; they overcame setbacks and endured hard times.

There is a danger in looking back and "outing" historical high achievers. I don't want simply to add the adjective "disabled" to Winston Churchill, Virginia Woolf, and Edward Lear any more than I agree with the current fascination with Stephen Hawking's disability. These people are simply exceptional contributors to politics, culture and science, regardless of their health conditions.

Nobody wants to be pigeon-holed as disabled, and of course, some of the people I have talked about have also experienced other forms of exclusion - class, gender, ethnicity, sexuality. And no one must feel bad that they may never win a Nobel Prize or be buried in Westminster Abbey like the highest of achievers.

Each of us is valuable, and all of us contribute something, somewhere. It's the glorious diversity of human embodiment, talent and individuality which should be celebrated, and so I hope that my recent talks have helped to rectify the balance.

Tom Shakespeare is an academic in disability studies at the University of East Anglia. You can hear him talking about the Radio 3 series and other disability-related issues in this month's Ouch Talk Show, available to download now.

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Managing pain with the power of the mind


Vidyamala Burch is helping people in pain through the practice of "mindfulness", the act of paying more attention to the present moment. But it took her many years to discover it for herself first.

When people are having serious difficulties, it can bring out the extreme sides of people's personalities, says Vidyamala Burch, a 55-year-old pain management practitioner based in Manchester. "One is the denial, pushy, driven side and the other is the more passive, overwhelmed, depressive side."

Burch lives with chronic pain having acquired two spinal injuries at an early age. The first happened at 16 when she lifted somebody from a swimming pool during water safety practice. The second was the result of a car accident five years later.

Subsequent surgery and years of wear and tear have added to her toll. "I've got a paralysed bowel, a paralysed bladder and my walking is impaired," she says. She admits she dealt with it all very badly in the early days, pushed herself too much and ignored her extra needs.

As a result, her body had a physical breakdown at the age of 25, and she found herself in intensive care. Whilst there, an Anglican chaplain led her through a meditation which changed her way of thinking. "I had a real ah-ha moment," she says. "I thought wow, I have a mind that can help me manage my situation."

A lengthy period of rehabilitation followed in which she tried many different relaxation techniques. Three years later, she found that one, called Mindful Meditation, worked well for her.

Start Quote

We have adapted the 'mindful movement' so that the primary emphasis is on being aware as you move, rather than how far you can move”

End Quote Vidyamala Burch

Now more widely known as mindfulness, it can be described as the act of focusing on the present moment, acknowledging thoughts, feelings and physical sensations. It is thousands of years old and Buddhist in origin, but has become popular as a therapy in the West in recent years.

Though perhaps most commonly associated with tackling mental health difficulties, and strongly promoted by the NHS for this, one of its first applications in this part of the world was to help with pain.

Burch says that when you have severe discomfort, there's a "rising up" in your body that exclaims "this hurts and I don't like it".

"The intuitive response is to turn away from it and try and get on with life in spite of your pain," she says. "With mindfulness, what we do is we turn towards it, to investigate what is actually happening in each moment."

In 2000, now ordained as a Buddhist, she found herself struggling to find paid work which she could physically manage. The idea occurred to her that she might be able to help others with pain on a professional basis.

She started a social enterprise called Breathworks where people with chronic pain take an eight-week course to learn how mindfulness could help them cope better with their physical symptoms.

Burch says some of her students were able to get back to work after a lengthy period of unemployment following the course. Others say that their sleep has been transformed.

The programme has been taught to thousands of participants, in over 20 countries.

Vidyamala Burch

Sophie Matthew, who has the arthritis-like condition ankylosing spondylitis, says that mindfulness has transformed her life.

"Mindfulness has helped me halve my intake of painkillers and I'm in a lot less pain than I used to be," she says. "My condition is chronic and incurable so I used to get into a real state worrying about it. I used to suffer from terrible exhaustion too. It was so bad that sometimes I simply couldn't get out of bed in the morning."

Burch is now a leader in this area and her company also trains practitioners. She sits on an all-party parliamentary group to incorporate mindfulness meditation into the NHS.

From stress reduction to pregnancy and birth treatments, mindfulness programmes can be quite similar. But she says there are "subtle but important" aspects of her pain relief course which set it apart.

The centre is called Breathworks because of the focus on breathing. She teaches students to acknowledge the tension which is causing pain and to "breathe into it", which she says reduces impact on the body.

Though it's common to find movement and exercise on other courses, Burch says that it might be "inappropriate" when working with people who are in pain.

"We have adapted the 'mindful movement' so that the primary emphasis is on being aware as you move, rather than how far you can move," she says.

"You go to open a door, you've got discomfort, you tense against that movement and your pain will get worse."

Two people meditating Vidyamala Burch says practising mindfulness can help with daily pain

Burch says her methods for pain also differ from others by focusing more on daily living.

Through practising mindfulness in her own daily life, she has discovered how much time she can sit at her computer without a flare-up - "I wrote both of my books in bursts of 20 minutes," she says.

"People with chronic pain tend to live in a boom-and-bust cycle where on a good day, you really go for it. Then you have a big flare-up as a consequence."

She calls this the "over-activity, under-activity" cycle.

"We get people to keep diaries of all their activities for one week, noting down what causes their pain to flare-up and what doesn't, and which ones improve the pain."

Compassion and kindness are a big part of the process and lots of people reportedly blame themselves for their difficulties. But some conditions you have to learn to live with because they aren't going to disappear no matter how determined a person is, or how strong the drugs are.

"There's something very beautiful about learning to walk beside whatever difficulty you've got, with dignity, acceptance and grace," says Burch.

"The fighting language in our culture around beating cancer or doing something in spite of a disability says that we should be able to overcome everything," she says.

"The consumerist culture says that there should be something out there that will make me better. But if you're living with a chronic condition, you might not get better."

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About Ouch disability

Ouch explores the disability world in blog posts and a monthly internet radio talk show.

It is brought to you by an award-winning team of disabled journalists – Emma Tracey and Damon Rose – with help from guest contributors who all have personal connections to disability.

Ouch goes behind the headlines of disability news, and also lifts the lid on the little details about being disabled that are not widely talked about. You can add your comments on each story - click here for the house rules on taking part.

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