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Archives for February 2013

Lying on a sound box: deaf children listen to music

Guest Guest | 09:02 UK time, Wednesday, 27 February 2013

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The National Orchestra of Wales has been staging unique workshops and concerts for deaf people. Radio 4 reporter Andrew Bomford discovers children listening to music in a very physical way and speaks to those behind it. Here he blogs about his emotional day.

I'll admit that I am a bit weepy sometimes. I cried at the end of Les Miserables, so the moment that the Welsh National Orchestra string section got started, and Katherine Mount stood there, signing and singing to her profoundly deaf - but clearly enraptured - ten year old son Ethan, I wasn't surprised to feel myself choking up again.

Watch Katherine Mount singing Ethan's Song on YouTube

It was towards the end of a long, joyful, but emotionally draining day with the orchestra and children from The Ysgol Maes Dyfan special school in Barry near Cardiff. Some of them are almost completely deaf and others have serious hearing problems, but the joy and enthusiasm shown by the children in their appreciation of the music they were experiencing was wonderful to see.

This was part of an outreach programme by the National Orchestra of Wales which has seen members of the orchestra regularly working with school children on musical improvisations, as well as the simple joy of making music. It was all culminating in a series of five free concerts for schools and the general public, taking part in Cardiff over the last couple of days.

So how does that work then, you might wonder? Music for deaf people? It doesn't seem to make a lot of sense.

"Music can just affect people - there is an emotional connection," said Andy Everton, an Outreach Officer for the national orchestra, and himself a trumpet player, "I really don't think you have to hear it in order to appreciate it. There is an emotional connection which just happens."

Andy tells a story about going into a school and seeing a severely disabled deaf child who seemed to be incapable of any contact at all with anyone. He stood behind her playing the trumpet (with the sound dampened) and to everyone's amazement saw her reaction as she moved her eyes to follow the music wherever he went. It was the first time anyone had seen her make any kind of connection to the outside world.

Other children from the school just jumped at the opportunity to simply bang a drum, hold the bass clarinet or the harp as it was played, and to feel the curious sensation of the sound waves moving through their bodies via their sense of touch.

A deaf boy lies on a sound box hooked to a piano

The orchestra has also come up with an ingenious solution to the question of how deaf children can experience music.


They've built sound boxes - large wooden platforms, with heavy speakers inside them, which play the music, and are especially effective with the low frequency sounds, in a way that resonates sound through whatever part of the body is in contact with the box.

I saw deaf children sitting on the boxes, touching them with their hands, and even lying fully prone on them, with huge grins on their faces as they felt the vibrations of the music (You can see an explanation of this in the above video). Two deaf boys, Ethan (a different Ethan) and Ashley from Maes Dyfan school stood on the sound boxes and belted out a rap tune they'd improvised with the accompaniment of the orchestra.

"When they use the microphone they can feel their voices from the box and through their feet," explained Andy Pidcock, a keyboard player who's done a lot of work with deaf children, "They can feel everything they're doing and they can feel the beat." I tried it out myself - it was a fascinating sensation; somewhat similar to the thud of loud bass you can sometimes feel in your chest at a very loud concert.

The orchestra's work has been championed by the charity Music and the Deaf, run by Paul Whittaker. "This is the only occasion when an orchestra has done a fully integrated project for deaf people," Paul said, "Normally an orchestra might go into a deaf school or work with a group of deaf children. They might go to a concert where they sit and watch what goes on. Here it's fully participatory. They come and sit with the orchestra and take part."

But, as mentioned earlier, the tear-jerker of the night was certainly Katherine Mount's beautiful performance of "Ethan's Song". With a gorgeous show-tune style melody, it was written by Katherine's friend Helen Goldwyn, who was inspired after watching Ethan experiencing a music concert.

The song asks lots of fundamental questions about what the 10-year-old deaf boy is thinking and feeling as he connects to his mother through music:

What do you hear inside your head? Music, your music. I know I feel joy when sound connects to feeling, When the vibration meets the air.

"She was able to write the words of the song," recounted Katherine, "And when I heard them for the first time I was absolutely blown away that she'd managed to hit the nail on the head and express exactly what I'd been thinking for all those years."

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Disabled animal videos go viral

Emma Tracey Emma Tracey | 08:53 UK time, Tuesday, 26 February 2013

A disabled piglet, sniffing around his new wheelchair

We love animal videos and, if the animals in those videos happen to have a bit of a disability, then we're drawn to them even more.

Here are some disabled creatures currently grabbing our attention.

A buoyancy-challenged goldfish gets around under water using a unique swimming aid. The disabled fish uses a bespoke sling to stay afloat.

By way of what we humans might call a reasonable adjustment, the fish is hand-fed because she can't easily reach the surface where a regular goldfish would find its food floating. The owner fondly says that her pet does "look a little silly". The owner is pleased that her fish can now socialise with other fish, rather than " lie at the bottom of the tank all day".

A Japanese amputee sea turtle has recently been fitted with a new pair of artificial flippers. Newsworthy in itself perhaps but when you hear it's the 27th attempt at the perfect flipper, you might sit up and wonder. The Loggerhead turtle's own fins got torn off during a 2008 shark attack. Since then, scientists have been searching for the best most workable prosthetics. Her latest high-tech flippers are attached to a jacket, which slips over the turtle's head.

Now that they've supported one turtle to swim successfully with prosthetic fins, scientists hope to do similar for other amputee sea creatures in the future.

Eddie the sea otter has been trained to play basketball in the hope that it'll help his arthritis.

At 16, he's rather elderly for an otter, but with a treat in store for every ball he gets through, Florida-based Eddie rarely misses a hoop.

Chris P Bacon was born without the use of his hind legs.

A vet has responded by making a wheelchair for the piglet using parts from children's' toys. A video of Chris learning to use his chair has gone viral, even making it on to the BBC's Canada pages.

Wonky needs a home. Dogs Trust say that the mobility impaired Staffordshire Bull Terrier was taken from her mum too early and then abandoned. Poor diet has hampered development of Wonky's front legs. Hopefully, whoever rehomes the dog will consider changing its name.

Share your video or disabled animal stories in the comments
below.

Disability in film: Are attitudes changing?

Guest Guest | 10:20 UK time, Thursday, 21 February 2013

Marion Cotillard with an orca in Rust and Bone

Ahead of Sunday's Academy Awards ceremony in LA, disabled film critic Scott Jordan Harris looks back at the year's bumper crop of disability related films. In an essay originally broadcast on BBC Radio 4's arts programme, Front Row, he explores whether or not a watershed moment has been reached in cinema's approach to physical and sensory impairment.

Rust and Bone, The Sessions, Amour and Untouchable are all fine films. They are accurate and unflinching in the way they address a range of topics - most notably sex and independence - that affect disabled people in ways they do not affect the able-bodied. But I doubt these films do quite enough that we would regard them, a decade from now, as major milestones in the development of cinema's approach to disability.

It is telling that the two of these four films not based on true stories - Amour and Rust and Bone - feature characters becoming disabled. In fiction films at least, disability is often only something that suddenly afflicts an energetic able-bodied person: a soldier who loses his legs in battle, say, or - as in Rust and Bone - a trainer at a sea life centre who loses hers in a spectacular accident involving a killer whale.

It sometimes seems like filmmakers believe audiences will only be interested in the business of becoming disabled, and the short-term psychological effects thereof, when I'm certain the reverse is true. How we became disabled is often the least interesting thing about us. It is how we spend our lives afterwards that is usually most worth documenting, as evidenced by The Sessions and Untouchable. They tell the true stories of paralysed men who did extraordinary things. Or rather, who refused to be prevented from doing ordinary things.

But to me, the key characteristic of these films is that they feature disabled characters but not disabled actors. We are now amused to recollect that, in Elizabethan theatre, all the female roles were played by boys and we cringe to recall that white actors once routinely blacked up. After the true watershed for depictions of disability in film, we will, I hope, question why any disabled character is ever played by an able-bodied actor.

There are, of course, greatly acclaimed disabled actors and there have been for many years. As long ago as 1946, Harold Russell, who lost both his hands in World War II, won two Oscars for his portrayal, in The Best Years of Our Lives, of a serviceman who had suffered the same fate. And the deaf actress Marlee Matlin remains the youngest person, able-bodied or disabled, male or female, to win an Oscar for best performance in a leading role. She received the academy award in 1987 for her portrayal of Sarah Norman, in Children of a Lesser God, aged just 21.

But Russell and Matlin, and a few other notable examples, are glorious exceptions to cinema's overriding rule that disabled people exist to be imitated as a test of an able-bodied actor's range and skill but not to be recruited by casting agents.

Any film about disabled people , however, deserves applause for existing at all. I hope we soon see many more like the four I've focussed on here, because the greater number of characters with disabilities there are to play, the more chances there will be that disabled actors will get to play them.

I hope, too, that we soon see many more films that do not focus primarily on disability but in which disabled characters are simply sewn into the fabric of the story, just as we are sewn into the fabric of life.

It will only be when films featuring disabled people become so commonplace that they cease to seem like a genre of their own, that we will truly have passed a turning point in the way film chooses to show us.

• This essay was originally broadcast on BBC Radio 4's Front Row programme, just before the Oscar nominations were announced. Click to hear the audio version, read by author Scott Jordan Harris.

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Breaking Free: Three kids with Down's syndrome tell their stories

Emma Tracey Emma Tracey | 12:00 UK time, Tuesday, 19 February 2013

Ruben, who narrated and stars in My Life: Breaking Free

"My body needs to get more stronger than not getting fat." That's Ruben's take on what he must do to reach his goal. Ruben is 12 and has Down's syndrome. He's been training hard for the chance to swim for Team GB, one of three stories told in new CBBC documentary My Life: Breaking Free.

Chatty, confident Ruben also narrates the film, something director Kate Monaghan believes is a first. She says: "We don't think that there has ever been a documentary narrated by a child with Down's syndrome before."

"I liked the equipment," Ruben told us when speaking of his time narrating Breaking Free. "The microphones and the earphones and the ladies in the crew."

Kate worked hard with Ruben to get his voice over right.

"One of the biggest challenges," she says, "was that Ruben's Down's syndrome affects the bit of his brain that helps memory. So he found it difficult to remember more than one or two words at a time. We had a lot of work to do editing it all together but he was absolutely brilliant."

Ruben's cheery voice sets a fun and fast moving tone to the film. Soon he introduces viewers to his friend Nicole who is out with her mum and buddy Charlotte.

Nicole is embarrassed by her mum's clothes choices in front of Charlotte and is keen to give her protective parent the slip. "You go and get a drink and me and Charlotte are going to shop," she urges.

We then follow Nicole at a week-long drama camp where she's the only one with Down's. While her mum frets at home, she has fun learning to dance and act: "I made new friends," she says after performing in her first live show. "We always hug, high five and a secret handshake."

The new-found freedom gives Nicole confidence to ask permission from her mum to go on a date with boyfriend James alone together. A big step for the young couple, both of whom have learning difficulties.

Harley is the third person with Down's syndrome taking part in the film and while Ruben and Nicole are happy and confident, his situation is a bit more challenging.

"I never really liked it. The people that came to me, and they punched my face." This was Harley's description of his experiences in year seven at school. He once got so upset about the situation that he ran away from his tormentors and in to his teacher's office, where he dialled 999 for help. The teacher explained to him afterwards that other steps should be taken first before ringing the police.

Ruben has also been bullied in the past and gives Harley some good advice: "If you tell the teacher, they will give a detention to the boy."

Harley now struggles to trust anyone. But he loves surfing and is banking on a week long course with his favourite instructor to boost his confidence.

Director Kate believes that My Life: Breaking Free, shows that "Down's Syndrome isn't scary, it's not something to be afraid of. The kids are the same as everyone else, with the same interests, hobbies and even love lives".

Ruben hopes that after seeing the film, other kids "won't bully us and will be more friendly."

• Watch My Life: Breaking Free on the CBBC channel, Tuesday 19 February, 17:45 GMT. Or catch it afterwards on BBC iPlayer.

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Road trip to the five countries that allow assisted dying

Damon Rose Damon Rose | 12:27 UK time, Monday, 18 February 2013

Tablets

Assisted dying is controversial the world over but there are a handful of countries which allow it. Liz Carr visits all five in a new documentary series for radio.

All countries do it differently depending on legal history. In Europe four countries have legalised the medical practice of assisted dying; the country that we perhaps most associate it with in recent years is Switzerland.

Here, one of the organisations which "assists" is called Exit. Carr visits their offices and is allowed inside the room where people can take the medicine that will kill them.

She paints a picture of the space in words, explaining it's smaller than she imagined: "It's a cold room next to the kitchen and someone had died there the previous night. There was still an empty coffee cup on the bedside table and the dirty laundry on a chair."

For the Swiss, it's likely to be a volunteer who helps them to die rather than a medic. That's because it's an old law dating back to 1873 which allows someone to help a suicide if the assistant didn't stand to gain from the death. It was updated in the 1970s to include medical assistance to those who are ill or dying, thanks to lobbying from Exit.

Allowing someone to die, or assisting them to do so, seems to go against what we've always been taught socially, ethically and via religion. But ideas about dignity and an end to suffering through a comfortable death have some popular appeal. Many believe that assisting someone to die if they are unable to do it for themselves could make us more human, not less.

The disabled Silent Witness actress and broadcaster Liz Carr admits on the programmes that she doesn't agree with the idea and sides with disability campaigners who believe assisted death could be a "slippery slope" to easy euthanasia and a devaluing of life. She fears especially for disabled and vulnerable people but is taking this journey to try and understand the full picture.

In Switzerland, a volunteer for the Exit organisation, Giancarlo Zucco, explains his side of the story to Carr. He says: "I have a feeling of solidarity for people who suffer and also for animals. I am convinced that every one of us has the right to decide about his life and about his death - how and when he wants, or she wants, to die."

Over 12 years, Zucco has assisted a lot of people towards death but is not sure of the exact figure. He says: "I don't know because I never counted it. But out of a feeling I can say over 200, something like that."

Zucco is keen to tell Carr that care is taken in the process and that only a third of the applications they receive, end in help from his organisation.

The five countries that Liz Carr visits in this two-part documentary, are: Switzerland, Belgium, Luxembourg, the Netherlands, and two states in the US (Oregon and Washington state). Each has a different story of how assisted dying happens, and why.

In part one, Carr also travels to Belgium where she meets a doctor who admits to performing euthanasia before it was legal; and in Luxembourg, she finds out
why the law on assisted suicide nearly caused a constitutional crisis.

• Click to hear When Assisted Death is Legal, episode one and Episode two.

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Oscar Pistorius, the day after the news broke

Damon Rose Damon Rose | 09:48 UK time, Friday, 15 February 2013

Oscar Pistorius

Oscar Pistorius

"I didn't expect that story to appear on the news, it shocked me, it could just as well have been Tanni Grey-Thompson flies to the moon," said a friend of mine on the phone last night.

She was, of course, referring to the news that Oscar Pistorius is facing a charge of murder, accused of shooting dead his girlfriend Reeva Steenkamp at his home in Pretoria.

A young woman has tragically lost her life, either by accident or deliberately, and now does not feel a good time to start analysing the wider effect of these sad events but, as the biggest Paralympic brand by quite some margin, the execs at the International Paralympic Committee are doubtless speculating feverishly as to whether interest in the sport might dip if poster-boy Oscar is no longer part of it.

There are few role models in disability and many, including disabled children, have looked towards Oscar with admiration for what he has achieved.

Oscar has been in custody for 24-hours and is appearing at a noisy bail hearing in court where he has broken down in tears when the charges were read to him.

According to the South Africa Police Service (SAPS), it was Oscar who asked to go to court immediately to appeal for bail. He was due in court yesterday lunchtime but it was postponed to Friday morning to allow forensics experts to analyse the evidence they have collected so far.

On BBC Radio 5 live yesterday lunchtime, Dianne Kohler Barnard, South Africa's shadow minister of police, spoke about the early application from the sports star, she said: "I would suggest that, considering his disability, it would be very difficult for him in a SAPS holding cell to stay there even overnight.

"I have been in those cells as part of my job, I go and examine these cells on a regular basis, and they are appalling. Basically people sleep on the floor on an old blanket. For him to physically cope with sleeping on floors, I think [it] may be taken into consideration that with his disability it might be extremely difficult for him not to have seating arrangements or a bed. Even the toilet facilities are, on occasion, something of a challenge.

"I'm sure that will be part of the appeal."

It has been reported that Oscar maintains that the shooting has been an accident and a plea of guilty or not guilty won't be offered until the full trial takes place. Police have said they will not be recommending bail in the meantime.

As is human nature, people are now taking a second look at his character in light of events and trying to come to conclusions that we can not be certain of until a trial takes place. Though he speaks at schools and is about to set up his own charitable foundation, media is understandably concentrating on previous allegations of domestic disturbances at his home and an emerging understanding that guns are a big hobby for him.

The news has no humour value so fans of Channel 4's disability comedy talk show The Last Leg, an unusual hybrid programme which started during the Paralympic Games and is back on our screens Friday nights, will be wondering how the hosts will handle this subject tonight.

Reeva Steenkamp was 30 years old, a law graduate, a model and was about to appear on Tropika Island of Treasure, a local television reality show in a new series which starts Saturday.

Athletics fans have been looking forward to seeing Oscar Pistorius race against Great Britain's Jonnie Peacock this July; they last clashed on Thrilling Thursday at the London Paralympics where Peacock won. Due to a change in sport rules designed to level the playing field a little more, it is the last big event where double amputees like Pistorius will be allowed to race against single amputees like Peacock.

[update 10:19am] It's being reported that Pistorius's defence team asked that he stays in the police cell rather than the local prison. The magistrate has accepted this. A full bail hearing has been postponed until next Tuesday. Oscar has now left the stand.

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Disability difficulties aren't just about ramps, they're also about sex

Damon Rose Damon Rose | 10:58 UK time, Thursday, 14 February 2013

Kirsty Liddiard

Access talk should go beyond transport, education and employment says Kirsty

For many years it has been said that disability and sex is a taboo subject. But recently we've seen more open discussions about it than ever before.

In news from the last month, there was the care home which invited prostitutes in in an attempt to stop its disabled residents from groping the staff, the sex surrogate talk generated by Hollywood film The Sessions, the so-called legal brothel to be set-up for disabled people and the second series of Channel 4's The Undatables which sought romantic partners for its "extraordinary singletons".

The stories concentrate on those disabled people for whom physical sex and the finding of a partner can be very tricky. This would tend to include people who have a lack of ability to move, talk or communicate. The above headlines mostly discuss sex from that angle and, if you dig deeper into the stories, you'll find that all those from the sex surrogates through to some disabled people themselves, often place sex in a clinical setting, or phrase it in terms of stimulation, need, mental wellbeing and learning - not fun, spiritual bonding or eroticism, for instance.

"When we talk about disability and sex work, [it is often framed] in this very therapeutic and rehabilitative call-it-a-sexual-health-centre way. says Kirsty Liddiard, an expert in disability, sex and relationships at Rierson University. "Why is it not OK for disabled people to go to a brothel and pay for sex in a standardised way?"

Liddiard, who is herself disabled, was speaking on the latest talk show from BBC Ouch!

She says: "Even though some of the headlines are problematic in the way they put disability and sex across, I think it's really important that they're starting dialogues and conversations around disability and sex which I think can never be a bad thing."

The Englishwoman in Toronto says she became interested in the subject when she found most academic conversations around disability were about "systemic structural barriers" like transport, education and employment. She felt that the personal aspects of disabled people's lives had been largely overlooked.

"The stories of young people are something I have a particular interest in," she says. "Their sexuality and their sexual stories were [about] lack of privacy ... and issues with parents [and] having basic physical access to places like nightclubs and pubs which is still quite dire.

"I think when you have a body that needs to be cared for in some way you have a very different relationship with privacy than I would imagine for most non-disabled people. Sex and sexuality ... are inherently private things."

Download or stream the Ouch! talk show and hear the full interview with Kirsty Liddiard.

Read more about Kirsty Liddiard's research and findings - the "plain language" document linked-to on this page is a good starting point.

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Be my disability charity Valentine

Emma Tracey Emma Tracey | 12:58 UK time, Wednesday, 13 February 2013

A bunch of roses

It's one of those feel-good red letter days in the calendar, who wouldn't want to attach their brand and their message to the cuddly love filled 14th February? Disability charities are lining up to do so, even though they say disability and love is a taboo subject - humbug.

It's not just florists, card shops and teddy bear vendors vying for your money and attention this week. Here's just a taster of how disability charities are spreading the love on Valentine's Day.

Appy Valentines Day

The Share Some Puppy Love for Hearing Dogs Facebook application gets the most modern cute and cuddly award for its social media idea.

Free to download, the app allows you to post a heart-shaped Valentine's card to your loved one's Wall replete with a romantic message and a picture of one of their adorable service dog puppies.

But there's no such thing as a free candle-lit lunch nor, it seems, a free charity eCard. Each one also happens to include a note about Hearing Dogs for Deaf People, who provide service animals to around 775 adults and children in the UK. The job of a hearing dog is to alert their owner to sounds and danger signals such as doorbells and fire alarms.

The RNIB and MSUK have free eCards too.

Care to dance?

For those not content with virtual romance, there's an opportunity for some face to face action at First Choice Barnett's Valentine's Ball.

According to the charity's website, the ball is "part of an initiative to promote independence among people with a range of disabilities". But don't let that corporate-speak put you off.

Most importantly to those who might fancy going, it's at Artsdepot in North Finchley from 7.30pm to 11pm on the 14th and there'll be live music, dancing plus Mr and MRS games.

Wild Bunch Club run by people with learning difficulties, are also running a Valentine's event in London. If you know of others, why not tell us about them in the comments below.

Sweet sweet love

What is Valentine's day, if not an excuse to eat luxury chocolate? We thought young dyspraxic chocolate maker Louis Barnett was the only UK disabled person making a career from cocoa-based comfort food. Then we learned about Chocolate Memories.

Based in County Down, Northern Ireland, the chocolate factory is a social enterprise run by Autism Initiatives UK and staffed by people who have an ASD - Autism Spectrum Disorder. They do, of course, have a big new range specifically for Valentine's Day.

When a chocolatier at Chocolate Memories completes their training they are then able to produce chocolates to sell and are entitled to proudly place a "carefully made by" sticker, on each of their hand made Belgian chocolate creations, along with their name. Sweet!

Disability and the dentist

Emma Tracey Emma Tracey | 15:38 UK time, Monday, 11 February 2013

Dentist with implements

Going to the dentist is something most of us barely tolerate. So what's it like for the disabled people who struggle to access surgeries or cope with treatment, and where can they go for oral health care?


"I frequently brush my forehead or slap myself with the toothbrush, which can be very painful," says Jessica Tomm, who lives with a constant stream of physical and verbal tics due to Tourette's syndrome. Her story is just one example of how dental care can be more difficult for disabled people.

Certain medications can cause tooth decay, as can regular vomiting. And people with Down's syndrome have teeth with cone-shaped roots, making them more likely to fall out.

There are three oral health care options for disabled people in the UK - the local dentist, community dental care services (usually attached to health centres), and special care dentists based in hospitals.

Primary Care Trusts, PCTs, do not hold a list of accessible dentists, so locating one can be a challenge.

The most straight forward way we've found to do this is via the NHS Choices website. Here, dentists are listed by area. Under facilities, each practice can fill in disability access details about their surgery, including hearing loops, Braille translation services, disabled parking and wheelchair accessibility.

Some have chosen to do this, while others haven't. This means that the onus is on disabled people to check each surgery individually, before they can tell which ones are accessible.

Ellie is a 10-year-old with Fragile X syndrome, a condition her mother Alexa describes as presenting "a bit like autism". For her, the barriers are emotional, rather than physical.

The current plan is for Ellie to be seen at her local dental surgery. But she doesn't like surprises, so Alexa has been helping her prepare for the day when she'll need dental work done.

"It started with her just coming in with me to my appointment," says Alexa. "Then we built up slowly, using large bribes, to her sitting in the dentist's chair. Then, after more bribes, to letting him look in her mouth.

"Ellie won't let him do anything else yet, but we might get there."

The British Society for Disability and Oral Health, BSDH, works to raise awareness of the barriers to dental care experienced by disabled people. Chairman Dr Roger Davies says that in cases such as Ellie's, "time and money are never wasted building the relationship between dentist and patient".

If the local surgery proves too much for Ellie, her dentist may refer her to a little-known government-funded facility called the community dental service, usually based in health centres.

"Dentistry there is exactly the same but it is about access to it," says Dr Davies. "We now have wheelchair recliners so that people can be treated in their chairs."

Crucially, community care dentists are not under pressure to make money. So appointments can be longer and more frequent, there is often more staff available and they are used to working with disabled people.

Dr Davies is anxious that not enough people know about community dental services.

"Most don't advertise," he complains. "You can't go on to the internet and find the closest community dental surgery to you, or even discover what services are available there."

GPs and dentists can refer a patient to their local service. Otherwise, PCTs will hold a list and can advise on the nearest available services.

If a disabled person needs closer medical monitoring during dental treatments, or a higher level of sedation than can be given in a regular or community dental surgery, then they are referred to a hospital-based special care dentist.

Dr Roger Davies' day job is as a special care dentist at a heart hospital. For him, the biggest challenge is "Patients who don't understand what you are attempting to do and won't put up with it - 200,000 people in the UK fit in to this category." His worst fear is starting a procedure and the patient becoming too frightened to continue.

Dr Davies works to build their confidence and to help them understand what's going to happen. Then a decision is made on how much "help" they'll need to stay relaxed during the procedure.

By help, he means sedation. There are four types - gas, oral sedation, intravenous and general anaesthetic, which he sees as a last resort. If the patient can't consent to sedation themselves, then a meeting is called with those who look after their best interests.

Disabled people can need dental work done under general anaesthetic for all sorts of medical and physical reasons. Lisa Egan has osteogenesis imperfecta (brittle bone disease), and recently needed a wisdom tooth removed.

"They took one look at my tooth and refused to touch it in case they broke my jaw," she says. "In the end, the only person willing to pull it out was a guy who rebuilds broken faces for a living. If he did break my face, he could bolt it back together there and then."

Lisa waited months for her surgery, something which doesn't surprise Dr Davies. He is concerned that disabled people needing work done under general anaesthetic are not being treated fairly by some PCTs.

"Trusts have to guarantee treatment within a certain period for 95% of patients. So people with disabilities are ignored."

He believes that disabled people end up in the forgotten 5% because they are seen as "higher risk", their treatments are "more complex" and the work often takes longer to do.

On the way down to theatre, Lisa says a junior member of staff told her there was a 50% chance they'd break her jaw while pulling her wisdom tooth. But their concerns were unfounded.

"Tooth came out fine. Jaw unharmed. All that palaver of getting referred all over the place and the added wait of several months just because I have osteogenesis imperfecta was for nothing."

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Ouch! talk show 94: Sexworkers, MS radio reveal and Special Olympics

Damon Rose Damon Rose | 10:31 UK time, Thursday, 7 February 2013

Rob Crossan and Liz Carr in the studio Feb 2013

Rob Crossan and Liz Carr host the lively talk show

Available monthly

This month: Was it tough for DJ Scott Mills's sidekick, Beccy, to reveal to Radio One listeners that she has MS? Are Special Olympics and Deaflympics overshadowed by Paralympic sport? And with The Sessions film and "brothel" therapy in the news, is disability and sex no longer taboo?

Liz and Rob present an unmissable show.

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

RELATED LINKS

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

Scott Mills's sidekick reveals MS - How Newsbeat reported Beccy Huxtable's on-air disability reveal and subsequent departure from the show.

Kirsty Liddiard's disability and sex research - Read talk show guest Kirsty's research, she particularly recommends the "plain language" document you can find linked-to on this page about her work.

Special Olympics: GB team star at World Winter Games (BBC News) - British competitors came away with 13 medals, including six golds, from the Special Olympics Winter Games in Pyeongchang, South Korea. On our talk show, Tony Garrett discusses the non-Paralympic disability sports happening in 2013.

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

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Disability videos: Frank Bruno, a blind skateboarder, how artificial eyes are made

Emma Tracey Emma Tracey | 12:32 UK time, Wednesday, 6 February 2013

Frank Bruno

Videos can be a powerful way of sharing a disability story. Here are some that have grabbed our attention recently.

Frank Bruno and his daughter Rachel talk about the boxing champion's mental health journey in this video for the Time to Change campaign. During the short but touching conversation, they remember the first time frank was sectioned and discuss how the family gradually came to approach mental illness in the same way one would a car tyre puncture. (Includes Bruno's brilliant laugh!)

Artificial eyes. Ever wondered how they're made?

Geek website Gismodo describes the process as 50 percent fascinating, 50 percent surprising and a hundred percent gross. Their words, not hours. Decide for yourself.

Blind skateboarder Tommy Carroll uses the sound of his wheels for orientation. This film showcases the US teenager's talents at the skate park. Like all self-respecting videos about disabled people doing things we thought they couldn't, it ends with a quote which is intended to inspire the audience: "You can overcome any obstacle if you really want it enough."

Stare at Shannon is an online video series by US wheelchair user Shannon Devido. The energetic young actress says that if people insist on staring at her all the time anyway, she might as well be "doing something awesome".

One episode of the humorous series sees Shannon leave the car at home and visit a drive through just in her chair.

• If you've seen an "awesome" online disability video recently, tell us about it in the comments below.

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More claims that the work programme is failing disabled people

Emma Tracey Emma Tracey | 14:53 UK time, Tuesday, 5 February 2013

The Job Centre Plus sign

On Sunday, 5 live Investigates revealed evidence suggesting that some clients on the Work Programme are encouraged to become self-employed when it may not be appropriate for them.

The programme heard from people who had been advised to sign off from receiving Employment Support Allowance (ESA) and claim working tax credits instead, even if they had no realistic prospect of making money and would be unlikely to be working the necessary number of hours.

One disabled woman the programme spoke to, who didn't want to be named, claims that her advisor attempted to push her in to working for herself, even though she wasn't interested and didn't feel able to run her own business.

Despite the fact that she had not had a job for eight years, on her very first Work Programme appointment she was told by her advisor that going self-employed would leave her financially better off.

She said: "He'd say, 'because you have a disability, it'd be better for you because if you're ill, you don't have to work'. I couldn't understand how that would be viable because obviously, if I was self-employed, I'd have to work to bring an income in."

Work Programme providers are paid for getting clients off unemployment benefits and into continuous work. They usually receive payments after a client has been in employment for six months. But bonuses of up to £3,500 can be given if a client from the hardest to help group, usually an ESA claimant, comes off benefits for just three months.

Some of the people reporter Hannah Barnes spoke to, suspect that they are being pushed into self-employment inappropriately, so that work providers can get their back to work bonus.

In reality, these clients don't gain employment, they simply go from being on Employment Support Allowance or Job Seeker's Allowance to claiming working tax credit. When receiving this benefit, they are no-longer considered unemployed and can come off their work provider's books after three months or six months respectively.

Speaking to Hannah, the anonymous disabled woman said that her condition is painful and incurable. Her advisor, who she described as being like a used car salesman, suggested that she could earn about £20 a week ironing or selling things online, but claim 30 hours a week in working tax credit - a situation which seemed to her "quite fraudulent" and one which would make her look like she had a full time job when she didn't.

Sue Royston from the National Association of Citizens Advice Bureaux, confirmed that, as a disabled person, this woman would indeed earn more in tax credits than she had on benefits during the first few months of self employment. This is because the system expects working to cost more due to her disability and also, it is assumed that a business won't earn much money in its first 12 months so she is afforded extra support to help her make a success of her business.

But while job seekers are removed from the Work Programme if they appear to have been in full-time employment for three or six months, it might be up to 12 months before they are checked on by the HMRC. "After a year or so", Sue told 5live, "they are going to ask you to prove how much work you have done. And if they decide that all the hours you are working are not in reasonable expectation of payment, all the working tax credit you've been paid from the beginning will be seen as an over payment". This would mean that the tax credit would have to be repaid in full.

Sue says that Citizens Advice now sees many people who have found themselves thousands of pounds in debt, because their business has failed and they are forced to pay back the working tax credit.

Kirsty McHugh, CEO of the Employment Related Services Authority, the body that represents the companies who deliver the Work Programme, expressed surprise when faced with the evidence 5 live Investigates had uncovered.

"The providers of the work programme only get paid if one of the job seekers gets into work and stays there for six months", she told 5 live. "So there's no point in giving advice to somebody who is not interested in self-employment, because they're obviously not going to make a go of it as a business, and therefore they are not going to be up and running for six months - and the work programme isn't going to get paid. The incentives are not in the system for job advisors to push people in a way they don't want to go."

On the programme, McHugh did not directly address the lower three month bonus that can be received for getting someone on ESA into employment.

Private companies charged with delivering the Work Programme, a £5bn scheme aimed at helping long term unemployed people back in to a job, have been under scrutiny in recent days.

Last Monday's Panorama explored why out of 68 thousand people on Employment Support Allowance, only one thousand have been found a job lasting longer than three months via the Work Programme. This is despite the fact that work providers get more money for helping harder to place clients, most of whom are ESA claimants.

The anonymous disabled job seeker 5 live spoke to, seems keen to work. Ending the interview on a tearful note, she said: "I know I'll need a bit of support and I'll need an employer that would be considerate towards me, but all I'm looking for is for somebody to give me an opportunity."

Speaking on Sunday, shadow employment minister Stephen Timms MP urged the Department for Work and Pensions to review 5 live Investigates' evidence and "close what seems like a very, very serious loophole."

• Since the programme aired, 5 live Investigates has received complaints about 12 different Work programme providers.

• This episode of 5live Investigates can be listened to online for five more days.

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My story: Lisa the deaf mortician

Guest Guest | 11:26 UK time, Tuesday, 5 February 2013

Lisa Jones 39 year old deaf mortician in lab coat

Lisa can't lip-read colleagues with face masks

Lisa Jones is a mortician at the Staffordshire NHS trust. She works alongside the Forensic Service in special cases such as Home Office murder inquiries. She's deaf and is profiled on this week's See Hear programme. Here she tells us about her job and how she got there.

In the mortuary, no one can hear you scream, well, I know I can't anyway.

Being deaf hasn't stopped me choosing a career as a mortician, or to be politically correct, an Anatomical Pathology Technician.

It wasn't my first option, though. I announced to my parents when I was six years old: "When I grow up, I'm going to work with plants and explore the jungle."

It was to the same tune that I graduated from Durham University with a Biological Sciences degree under my belt. I had planned to be a botanist and was looking forward to finding new plants in exotic places. My final uni project was about insect interactions with sunflowers.

I was ready to take on the world of botany ... but an impromptu work experience stint at a local hospital laboratory completely changed my life forever. Plants be damned.

I've been working as a mortician for nine years, and for 15 as a biomedical scientist for the NHS Trust. I am profoundly deaf and even though my main communication method is speech, I also use Sign Supported English - or a dodgy style of British Sign Language, for those that know me.

Obviously being a mortician is not for everyone. Despite all the crime dramas such as CSI and Silent Witness, people think that working in an autopsy room is all high tech and glamorous. I can tell you now it isn't. Specialist tests do not take minutes to reveal the identity of a murderer, nor does a retinal scan of a detached eyeball reveal what the victim had for breakfast.

I very clearly remember my first post mortem, performed on an elderly man who had died of a suspected heart attack. The pathologist had completed an external examination and was about to ask the mortician to start the evisceration (organ removal). As soon as the knife penetrated the skin, all heads turned to me to check whether I was still standing or retching up all down my scrubs. Actually, I was totally engrossed in the procedure and was grinning like a Cheshire Cat. I had found my calling.

I've never really considered my deafness to be a hindrance in my career although there can be a few issues which push the boundaries. For example, during Home Office post mortems in which DNA sensitive murders are being investigated, the Scene Of Crime Officers are quite often dressed from head to toe in little white pixie outfits complete with face masks that render lip-reading virtually impossible.

The chatter of police radios in the background can obliterate normal conversation. Complex medical terms mumbled by forensic pathologists can be difficult to understand too. In these circumstances, the lab can be a lonely world for a deaf person who doesn't take the initiative to explain deaf awareness and how communication issues can be overcome.

Other regular challenges include: handling the aftermath of a suicide or sudden death, explaining to grieving families why we need to perform a post mortem on their loved one, dealing with doctors who have challenging accents, the emergency services and undertakers ; all which have to be dealt with in their own way.

With the proper dedication and effort, deafness should not be a barrier to anyone looking towards a similar career.

• Watch Lisa on See Hear this Wednesday 6 February at 10:30am on BBC Two - the new time for the long-running programme for deaf viewers.

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Blogging the week: learning disability charity CEO Jane Chelliah

Guest Guest | 10:34 UK time, Friday, 1 February 2013

Jane Chelliah with her daughter

Jane Chelliah is the voluntary CEO of Powerhouse, a small north London charity supporting women with learning disabilities. Here she blogs the week on the web from her view as a feminist and a Christian.

There are 375,000 women with learning disabilities in England, yet their predicament is hardly mentioned in the wider debates around disability and feminism. As a feminist myself, I am constantly frustrated by the inability of the movement to tackle disability issues. Recently an ethnic minority member of Powerhouse was facing a forced marriage. We called the relevant authorities who provided her with an alternative that she took. It is often assumed that our women do not have the capacity to make their own choices.

Research has shown that women with disabilities are twice as likely to face domestic violence as the general population, because they are extremely dependant on their carers. Some of our members have been attacked and raped in their own homes. A few have had their children taken away from them because of the violence. One woman told me that her favourite times are spent with her children. I wept when she then said that they had been taken away from her many years ago. She still speaks of them in the present tense.

Panorama: The Great Disability Scam? featured a woman with learning disabilities called Ruth, who had wrongly been deemed fit to work. The rampant ignorance shown towards her situation, mirrors the experiences of many of Powerhouse's women who need constant care and find it harder to access information and services that will help them.

Work is something our members want because of the financial independence it brings. My charity is desperately trying to set up a social enterprise programme because Mainstream workplaces are, in our view, not designed to cope with people who have learning disabilities.

We had hoped that last summer's Paralympics, held in the borough of Newham where we are situated, would do wonders for our cause. Sadly, we did not derive a single benefit from the Games. It did seem like a wasted opportunity not to have been included. Still, we bought our own tickets and spent a fantastic day showing the women that it is possible for disabled people to be admired and respected.

• the Special Olympics Winter Games, for people with learning disabilities, is happening at the moment in South Korea. It has hardly attracted any publicity, which leads me to wonder whether any sustainable legacy can come from London 2012.

In our own small way, we celebrate sport as an enabler of self-empowerment, by organising activities like badminton, tennis, Zumba classes and walking for our women.

Many suffer social isolation that deprives them of leading physically active lives. Powerhouse is only open for two days a week due to funding difficulties and we pack these days with a varied timetable of physical and other capacity-building sessions like literacy and motivational talks. But unfortunately, some of our women are stuck at home when we are closed. They do not want to go out for fear of being victims of disability hate crime.

One of our members had her beautiful long hair cut while walking down the highstreet. A group of teenagers thought it would be fun to sneak up to her with a pair of scissors in hand.

• The World Economic Forum met at Davos last week. They discussed the inclusion of women in high level economic decision making on issues such as education, health and maternal care. Laudable as their aims might be, the World Economic Forum reminded me again that the gender dividend never seems to include women with learning disabilities. It falls to charities to chip away at the yawning gap between our disabled members and wider society.

Nobel Economics prize winner Amartya Sen called development a process of expanding the real freedoms that people enjoy - this is what we aspire to.

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