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23 November 2014 Last updated at 16:40 ET

The meaning of Mongol

Uuganaa with her family Uuganaa with her Mongolian parents and niece

Uuganaa Ramsay was raised in Mongolia but now lives in Scotland. She has recently been exploring why her ethnicity is linked to Down's syndrome, a condition diagnosed in her son.

"I don't like that word," says a woman sitting opposite me on the train, pointing at the title of the book I am holding. "Horrible word."

It's my memoir, but she doesn't know that. It was me who gave it the one-word title, Mongol.

I chose it because it has a deep meaning for me. It's the word I grew up using to describe who I am, reading it in poems, singing it in songs, writing stories with it and drawing pictures about it - it represents my identity and culture.

"Where are you originally from?' the lady asks. "Mongolia," I say. "Oh, of course. Of course you are," she says. I could see in her face that she had realised something that was now obvious but hadn't previously occurred to her.

The word Mongol is rarely used politely these days and is often unpleasantly shortened to "mong" but how on Earth did my ethnic identity end up becoming a slang word for stupid? Even worse, used by comedians to "push boundaries".

Inside a yurt

While working at the Royal Earlswood Asylum in the 1860s, John Langdon Down started to categorise the patients known then as "idiots", noting that one group all had a similar appearance. Mentioning a roundness of cheeks, the shape of eyes and other physical traits, he wrote: "A very large number of congenital idiots are typical Mongols."

Julie Coleman, Professor of English at Leicester University, thinks Down is saying "these people have regressed to an earlier state of humanity, which is the state of being Mongolian," noting also that this observation came some seven years after Darwin started to talk about evolution.

The name Mongol stuck even though some of Down's contemporaries doubted the racial theories he documented in the paper Observations on an Ethnic Classification of Idiots.

It wasn't until 1965 that the People's Republic of Mongolia complained to the World Health Organisation that the term was derogatory towards them, and it was replaced with Down's syndrome. The word was still commonly used in the UK in the 1980s.

But though my ethnicity is Mongol, the reason I get emotional is because we lost our three-month-old son, Billy, who was born in 2009 with the condition. Billy had a hole in the heart and died at three months old of a chest infection before being able to have surgery. The two meanings of Mongol collided for me then, causing pain, grief and anger.

When Billy was born it was suggested he may have Down's syndrome but before the tell tale extra chromosome was confirmed by a blood test, one doctor said that the original diagnosis may have been confused because of his ethnicity. So the link remains in people's minds.

For a BBC Radio 4 documentary, I returned to Mongolia after a gap of eight years. I love the country.

Uuganaa's son Uuganaa's son Billy was born with Down's syndrome but passed away from a heart condition

Mongolians have a nomadic tradition. I was raised in a yurt on the plains, have herded goat and sheep and journeyed by horse. We are good at adapting to different situations, have good survival skills and traditionally you can turn up at anyone's house and expect to be fed and get a bed.

John Langdon Down first stigmatised Mongols by linking them to the disability and 100 years later, after being widely acknowledged that the word Mongol shouldn't be used in the context of Down's syndrome, people frown on it or campaign against it because they know it's bad.

I started writing a list of countries where the term has been used in a derogatory way or to mean Down's Syndrome. I now have over 20 countries on my list.

I needed to speak up about it and I did by originally writing a book. Some people told me to be more resilient and follow what they did in their culture and just accept it. Some comforted me by saying languages change over time. But the question bugging me was who changes languages, because confusion over the term is still strong.

Uuganaa with her parents Uuganaa travelled to Mongolia to explore how the term Mongol has been used

One half Mexican and half Mongolian person contacted me to say that in the Latino community, the words "Mongolito" and "Mongolita" still have very ugly meanings. "Introducing myself as a half Mongolian to my Hispanic acquaintances proved to be almost embarrassing throughout my teenage years," they said.

And another person from Morocco told me they have a son with Down's syndrome and that neighbours call her Mongolian and throw stones at them in the street. Again someone from South Africa wrote to tell me they were "shocked to find that Mongolians refer to themselves as Mongols when I arrived in Mongolia".

In the US, some Mongolian friends of mine were stopped on the street by a lady insisting they should take their child to a doctor because she suspected he had Down's syndrome. And while on a course in London, my Chinese and French classmates told me: "We didn't know someone from Mongolia could be normal and clever like you."

I want people to know you can use Mongol in the same way as you would refer to a Scot, Turk or Pole. It's fine. We can unlearn negative connotations because we learnt them. You can call me Mongol because I am one.

The Meaning of Mongol airs on BBC Radio 4 on 24 November at 20:00GMT.

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Edward Rushton: Who was this blind revolutionary?

Mural of Edward Rushton

A city-wide exhibition in Liverpool is paying homage to an 18th Century blind poet and slavery abolitionist. But who is Edward Rushton and why is he being remembered?

It is pretty amazing when looking at Rushton's life that he isn't more well known. Revolutionary poet, early disability rights campaigner, vocal slavery abolitionist, and founder of the first blind school in the country, but few, it appears, have heard of him.

"He wasn't an establishment figure," explains Steve Binns, a Liverpool historian. "He hasn't achieved longevity because he was uneducated and took a minority view, but what he did in his lifetime was remarkable."

Rushton was a vehement liberal and a passionate revolutionary. He pushed for a blind school when disabled people were all but considered worthless, and tirelessly spoke out against the slave trade, of which he had personal experience.

Born in 1756, Rushton took work on board ships as a crew member when he was just 12, a typical venture for somebody of his social standing. The slave trade was booming in Liverpool at that time, and working on board a ship gave young boys a chance to earn a considerable amount of money and rise up the ranks quickly.

Rushton seized this opportunity and his tenacity and fearlessness shone through, Binns says. When he was only 16 a ship he was on board encountered trouble in the Irish Sea. The captain and crew were all drunk and about to flee, but Rushton, who was sober, took to the helm and brought them to safety.

Tragedy at sea

A year later, in 1773, when on board a second slave ship from the Ivory Coast to Jamaica, a tragedy happened that would stay with Rushton for the rest of his life. The ship became wrecked and the crew and slaves were flung into the water.

Swimming towards the safety of a floating cask, Rushton discovered that a slave, Quamina, was already clinging to it. He had formed a relationship with Quamina, and had even taught him to read while on the ship. Seeing him approach, Quamina selflessly pushed the cask towards Rushton so he would be saved, bade him goodbye, and sank to his death. In his Memoir of Edward Rushton, Poems, the author William Shepherd wrote that Rushton often spoke of the incident, "never without dropping a grateful tear to the memory of Quamina".

Painting of Rushton Edward Rushton was completely blind in his left eye

Rushton thought the treatment of slaves was abhorrent, and was particularly saddened when he discovered that many were being locked below deck for having an infectious eye condition which caused them to go blind. The crew were scared they were going to catch the ailment, believed now to have been opthalmia, though stopped short of throwing them overboard as was sometimes the practice. In 1774 on a journey to Domenica, however, Rushton insisted that he be allowed to give the slaves food despite being threatened with irons by the captain.

As a result of his compassion, he caught the infection and lost almost all of his sight. "We expect he was about 80-90% blind from this point onwards," Binns says. "We definitely know he could not walk unaided or read."

'Hopeless blindness'

This will have been very upsetting for Rushton, says Binns. He had been starting to get actively political which would now be more difficult. Braille hadn't been invented yet and he was forced to pay for a boy to read to him, despite having been thrust into poverty after going blind.

Desperate to get his sight back, in 1776 he consulted with King George III's occulist Baron Wenzel who was well known for his work on cataracts but learnt there was no hope. William Shepherd writes that Rushton returned to Liverpool in a "state of hopeless blindness".

His public stance against slavery had led to him being cast aside, ignored by friends and accomplices. The trade provided Liverpool with many jobs and opportunities, and Rushton's admonishing of it was not well received.

Becoming aware of how difficult it was to navigate society without sight, Rushton became passionate about creating a school for blind pupils, specifically aimed at improving their job opportunities and enjoyment of life.

He sought funding from leading members of Liverpool liberal society but initially got no response. A number of months later a letter from Rushton was circulated which impressed upon liberals the importance of providing help for blind people.

An old sketch of the blind school in Liverpool An early sketch of the Royal School for the Indigent Blind in Liverpool

Support grew for the school despite objectors saying it would merely provide fiddlers to fill the streets of Liverpool. Eventually King George IV gave 50 guineas and the royal patronage that helped Rushton start the Royal School for the Indigent Blind.

200 years later, the school is still running but now caters for visually impaired students who have additional disabilities. The memory of Rushton lives on there.

Binns, who is blind and attended the school when he was a child, says he grew up thinking Rushton "was on our side". "A story was still passed around that, on discovering the teachers were eating the good food, Rushton intervened to ensure it was equally distributed amongst pupils too," he recalls.

Binns isn't disappointed that few people seem to know about Rushton and his achievements. "He wouldn't have cared about being remembered," he says. "He was a radical who showed he didn't give a damn what people thought."

To mark the 200th anniversary of Edward Rushton's death, DaDaFest are holding a series of events around Liverpool including a service of thanksgiving at Liverpool Cathedral on November 22.

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'I was bullied because I'm disabled'

A child alone in the playground

Research shows disabled children are much more likely to be bullied. Three young people who were once victimised tell their stories and share tips on tackling the problem.

This year's Anti Bullying Week has been asking schools to give particular attention to children with disabilities or special educational needs. The organisation behind the campaign, the Anti-Bullying Alliance (ABA), has published new research on attitudes to disablist language this week and cites other recent research which shows eight out of 10 children with learning disabilities have been bullied, and that disabled children at primary school are 50% more likely to be victimised.

Rebecca, Maxine and Ammaar were at the receiving end of bullying. They explain how they got through it in the hope that their stories will help those having trouble now.

'Speak up'

More than 90% of parents of children with Asperger Syndrome told the ABA that their child had been bullied in the past 12 months. Rebecca Parkin is 17 and has the condition. She was bullied regularly from the age of six until recently, when becoming a campaigning voice for others in her situation boosted her confidence. Rebecca says she was an "easy victim" for bullies. "I rarely spoke to anyone. I was really shy and kept to myself, even saying hello to someone was really difficult for me," she says.

Start Quote

Rebecca Parkin

You need to speak up so things will change”

End Quote

The problems began in primary school, where she was called names and excluded from friendship groups, but she describes high school as "a living hell". "I was called fat, crazy, weird, stupid, ugly. When I was about 12 a gang of 16-year-olds came up to me in a park and tried setting my hair on fire. In school I got hit and tripped up, I had food and water thrown on me. One day a boy cornered me and said he was going to find me after school and kill me. I also got abuse online and someone set up a fake account on YouTube in my name so people could leave nasty comments on my videos."

Rebecca was so badly affected that she began self-harming and needed help from mental health services. Things only changed for the teenager when she managed to speak up about what was happening to her. She says that she bugged teachers "until they did something about it" and that helping others in the same situation taught her that "you need to speak up so things will change".

"I know it's hard but if you can't vocalise what's wrong, write it down or draw it," says Rebecca. "Do whatever you can to show how you are feeling and what is going on."

Rebecca is now an anti-bullying campaigner with Ambitious about Autism, NSPCC and Ditch The Label.

'Take precautions'

Maxine Young is 22 and acquired a learning disability as the result of a brain tumour at the age of three.

Start Quote

Maxine Young

If I do get bullied now, I say to them, why are you doing this?”

End Quote

"He called me brain tumour kid," says Maxine Young, referring to one boy who bullied her. She was consistently called names and teased about her size and appearance throughout primary and secondary schools, and then at college. Telling teachers led to bullies getting temporary exclusions from school, but the bullying only stopped completely when Maxine was physically assaulted at a bus station, and went to the police. The attacker got a two-year suspended sentence and was ordered to pay compensation. This, coupled with how seriously the police took her situation, has helped her grow in confidence. Maxine has now developed strategies to avoid being targeted in the future.

"If I do get bullied now, I say to them, why are you doing this? What's the point in bullying people when you won't get anything from it? I carry a personal alarm with me in case I do get assaulted again," says Maxine, who has also received self-defence coaching from the police.

Maxine now helps Mencap to give anti-bullying training to parents and carers of people with learning disabilities .

Mencap are keen to stress that Maxine's story is an exception to the rule. The charity says that in the last two years there were 124,000 disability hate crimes, but only 3% of these were recorded by the police, and only 1% resulted in prosecutions.

'Don't believe them'

Ammaar Hussein is 16 and has been a victim of bullying in the past because of his deafness. He recently made a video for the National Deaf Children's Society (NDCS) giving tips for ways to tackle bullies. One tip he offers is, "Don't believe the bullies".

Start Quote

Ammaar

I kept thinking 'do I really look so different?'”

End Quote

They would "speak very slowly, stretching their mouth and making fun of me" says Ammaar. It reached the stage where the bullies' words affected how he went about his daily life. "I kept thinking that I couldn't communicate properly and that people wouldn't understand me if I tried. I felt embarrassed.

"One boy called me a robot because I was wearing my hearing aids," he continues. "I felt really annoyed and ignored him but I kept thinking 'Do I really look so different?'"

He says his biggest mistake was to listen to what bullies told him. "I did not realise that they were trying to ruin my confidence," he says. "Remember, bullying is never your fault."

Ammaar is now an anti-bullying ambassador at his school and he helps other deaf young people who are being targeted because they can't hear.

Have you been affected by bullying? Email us at ouch@bbc.co.uk

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Viewpoint: What’s troubling disabled people about the Tania Clarence case?

Tania Clarence at the Old Bailey Tania Clarence was sentenced at the Old Bailey

A woman who killed her three disabled children by smothering has been sentenced to a hospital order. The judge's ruling sparked an online debate that has been overwhelmingly sympathetic to Tania Clarence's situation, but some aren't happy with the reaction.

Clarence's solicitor Richard Egan explained outside court that the mother was "overwhelmed" by her situation, that the "daily struggle" of caring for her children eventually overcame her "ability to cope with the enormity of the task she faced."

The most popular reaction from the public was one of empathy for Clarence, a depressed woman looking after three young, disabled children. One person wrote on the Daily Mail comments section: "How anyone could cope in this situation is beyond me. Healthy children are hard enough work, but 3 profoundly ill children...it would be non-stop and watching them die."

But for others the case has ignited anger, in particular people with spinal muscular atrophy have expressed concern at how the disability has been portrayed by the media as an "infant killer", despite most with type 2 living long and fulfilling lives.

Disabled journalist Mik Scarlet outlines some of the viewpoints surrounding the case.

Katherine Araniello, who has type 2 spinal muscular atrophy (SMA), the same condition as the Clarence children that died, stated on her Facebook page: "This mother acknowledged and understood what she had done and appears to have planned to kill her children... so my overall feelings on this story are the terrifying moments those poor children had. I can relate to zero physical movement, not being able to wave my arms in protest, let out a scream, defend myself."

Mark Womersley, who also has SMA type 2, posted a video on Youtube in which he expresses how deeply the case has affected him. He raises his worries about the media portraying the condition as an "infant killer", even though he has reached the age of 47. He believes the charge of manslaughter did not fit the facts of the case as they came out during the trial. He also raises his fears over the use of the term "mercy killing" during the trial and what it might say for disabled people in the future.

The phrase "mercy killing" was used early on in the trial, although the judge, Mr Justice Sweeney said before sentencing this was not a "mercy killing in the sense in which that phrase is normally used. The children did not ask to be killed, and you did not, and do not, seek to justify your actions as being justified in mercy."

Gary Clarence and his two sons, The children's father, Gary Clarence, was in South Africa at the time of the deaths

While the case itself is causing a great deal of debate, the arguments in mitigation made by the defence surely raise important questions that should be used to learn for the future. A key issue is how could any mother with three disabled children reach a point where the only solution that seemed viable was to end the children's lives? There are all manner of services available to parents of disabled children, yet much of it is only provided after being sought out. If this kind of tragedy is never to happen again, what should be done to ensure that no parent can ever claim that they lost hope due to lack of support? How has the care and support systems for the parents of disabled children reached a point where families can feel such despair?

Parents of disabled children regularly claim that they find it almost impossible to source the correct support and are not even sure of what is available to them. Why are there not systems in place to ensure that as soon as an impairment is highlighted all the support that might be required is not made available as part of the treatment process?

Another troubling question is why the signs of Clarence's failing mental health were not spotted sooner. We hear time after time from people who have experienced mental health crisis points that they felt a total lack of support and understanding, both from the medical profession and the wider society. It too often falls on the person experiencing problems to seek out help at a time when they are least equipped to do so.

Most importantly for disabled people, why is it that the courts, the media and the general public repeatedly see death as being preferable to being disabled?

During the discussion on Facebook, Katherine Araniello explains how she feels about the impact of the coverage of disability in the Clarence case. "From the SMA perspective, as always, this is a completely one-sided misrepresentation," she writes. "I don't know any SMA people who want to die. All of us are highly motivated individuals and are petrified by the real threat of legalising assisted suicide in the UK. Such biased representation of people with SMA... drip feed the public into viewing us as medical failures/problems, and is what makes this story so unequal to that if it had been non-disabled children."

If the portrayal of disability is mostly negative in tone how can parents of disabled children foresee a positive future for their offspring? The disabled community decry how so many damaging stereotypes around disability are reinforced by the press and media, yet when a case such as this arises the media and press are quick to blame everyone except themselves.

Whatever your feelings about the issues raised by the sad deaths of Max, Ben and Olivia Clarence, there can be no question that we must all do our utmost to ensure nothing like it ever happens again. No parent of a disabled child should ever claim that they have been left so bereft of support that they could not cope or that their expectations for the future of their child were so poor that the child's death seemed preferable.

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Ouch talk show 113: Did you say 'inspiration porn'?

Presenters Rob and Kate and guests Tim and Jack

On this month's show - comedian Stella Young doesn't want to be considered an inspiration just for being disabled, and Bad Education star Jack Binstead on setting up his own YouTube channel.

Also, a 43-year-old husband and father with cystic fibrosis on how he stays positive with a shorter life expectancy. And our citizen correspondent on being cautious about reports of scientific breakthroughs.

With Rob Crossan and Kate Monaghan.

How to listen

Listen

Show notes

More about this month's guests and discussions:

  • Stella Young is a comedian and journalist from Australia. She recently gave a TED Talk in which she humorously discusses what she calls "inspiration porn" - where a disabled person does something they believe to be entirely normal yet is held up as inspiring for doing so. She considers it to be damaging.
  • Tim Wotton has cystic fibrosis, a life-shortening lung condition. At 43 he has lived far beyond the expectations of doctors. He's a family man, a business consultant and plays hockey for a local team. He writes about life with CF in a blog and talks about his book on the show.
  • Also joining Rob and Kate in the studio is wheelchair athlete turned comedy actor Jack Binstead. He has started video blogging (vlogging) on his own YouTube channel.
  • Our news item comes from Ouch's cures correspondent Jocelyn Tomkinson in Vancouver, who has her own disability podcast.

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

Producer: Damon Rose,

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The woman who runs a charity from bed

Vikki in her bedroom

A woman with ME who runs a charity from bed where she spends all her time, is urging others to complete a list of wishes to mark her 30th birthday.

Aspirational lists of things to achieve are seen and shared regularly on social media. Though 29-year-old Vikki George reads them, she can't do the action packed things like skydives and round the world trips that they often contain, due to ME (myalgic encephalomyelitis) which gives her chronic fatigue.

The condition means George also experiences a lot of pain and in 2012 it caused three months of complete paralysis. Now she has to spend most of her time in bed, in darkness. She leaves the room for only an hour a week when her parents help her downstairs to lie on the sofa.

This means that for her birthday George is unable to plan the activities her peers might, and she would have a lot of catching up to do first. "I haven't ticked off any of the teenage things," she says. "I haven't even bought my first legal drink or had my first driving lesson."

Instead, to mark her birthday she has come up with 30 wishes designed to make others' lives brighter. She is now asking the general public to carry them out.

The wishes include joining the bone marrow register and helping to raise £6,000 to buy a beach wheelchair for her favourite Norfolk holiday spot. They are all things that she would like to achieve if she could. "If I was well enough, I would like to be outdoors, actively fundraising," she says.

Though she is asking others to carry out good deeds there are positive things she is able to do from her bed which she dedicates a lot of time to.

She co-founded Postpals 11 years ago, a charity that delivers cards and gifts to seriously or terminally ill children and their siblings.

A postpal of Vikki's holding a teddy bear Vikki George sends toys to terminally ill children

George had the idea after a particularly severe bout of illness. At the time she was receiving cards regularly from AYME, the Association for Young People with ME, and says it was the highlight of her day. "Mum and dad would bring up the post and read it to me," she says. "Pinning them up on my bedroom wall made me happy."

She now puts all her spare energy into doing the same for others, and the latest project is sending letters to children from each of Santa's reindeer.

"One girl in hospital thought that the reindeer had peeked through the ward window," says George. "Another boy was so relieved because the letter from the reindeer had come to the hospital so Santa definitely knew he was there."

A boy in bed with a teddy from postpals

So far, 15,000 people have watched a YouTube film about Postpals, whose patron is BBC Radio One DJ Fearne Cotton. Wish number two on the list is to get the video viewing figure to 300,000.

The fifth wish was for 12 flowers to be given out to strangers, which George's local radio station BBC Surrey granted recently. The morning show is featuring one of her wishes each week in the run up to Christmas.

George has been keeping tabs on the progress of her wishes from her blacked out bedroom. She says her room is "a mess, and talks about the brightly coloured "stuff" pinned up everywhere which she can see in dim light. "I often have butterfly things scattered around because they have become my symbol of hope," she says.

The 30 wishes have been posted on her blog from a tablet computer which she describes as a "lifeline to the world." When she's in hospital, she insists on a room with Wi-Fi because the internet is how she maintains contact with her friends, most of whom also have ME.

She is keen to raise awareness of the condition and the 30 Wishes project has allowed her to do so. "You only see people with ME who are doing really well and out and about," she says, "you don't see the ones who are behind closed curtains. I'm sure we've got neighbours who don't know I exist."

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Wheelchairs or pushchairs: Who should take priority?

Man in wheelchair waiting for bus

A court will decide whether wheelchair users have priority over pushchairs on buses, but how do you decide who is more entitled to the space?

In February 2012, wheelchair user Doug Paulley was not allowed to board a bus in Leeds because the wheelchair space was taken by a pushchair. The mother, not wanting to wake her sleeping baby, refused to move.

Paulley was left with no choice but to get off and wait for the next bus. That one took him to the wrong side of the city and he had to wait an hour for his train. It was the straw that broke the camel's back. "That day in February resulted in me not using a bus again for a year. I lost all confidence and couldn't face it any more," he said last year.

But did he have more of a right to the space than a mother not wanting to wake her sleeping child?

The law says he did because disabled people are a "protected group" under the Equality Act 2010. This means that they have a legal right to protection from discrimination and access to facilities, including public transport. The same protection is not given to parents travelling with pushchairs, because they have other options - they could fold the pushchair away, and sit with their child on their lap.

For Baroness Tanni-Grey Thompson, who knows what it is like to be a wheelchair user and a mother with a pushchair, the psychological significance for disabled people of knowing they can get on the bus is an important factor that should be noted.

Start Quote

The issue should really be about equality of access for everybody”

End Quote Claire Muller Mother

"I'm a mum, I've been there with a pram, but for disabled people it's important they have the ability to travel in the same way as anyone else," she says.

That, for disability campaigners, is what it boils down to, a person's basic ability to get around. They argue that other travellers, including parents with pushchairs, could ultimately walk the remaining distance whereas disabled people could not.

But Claire Muller, a mother who recently had to get off the bus for a wheelchair user, feels as entitled to that space as a wheelchair user. She says that people could end up resenting disabled people. "At the moment you're firstly hoping there's not another pushchair on there, and then at every stop you're hoping there's not a wheelchair user," she says. "It shouldn't be the case, but it is."

Back in 2012, First Bus, the company in charge of the bus Paulley tried to get on, had a "first come, first served" policy that meant the driver could ask the woman to move, but could not force her. It relied on the goodwill of passengers to give up their spot for a wheelchair user, and as became evident, this reliance was open to failure.

Paulley was so upset by the experience that he embarked on an 18-month legal battle against First Bus, a case he eventually won. A judge at Leeds County Court ruled in September last year that First Bus's policy of "requesting but not requiring" non-disabled travellers to move was unlawful discrimination, in breach of the Equality Act 2010.

A woman waiting for a bus with a pushchair full of shopping

The judge, Recorder Isaacs, ruled that Paulley had been put at a substantial disadvantage because of the incident. If the next bus had arrived more quickly then Natalie Rodgers, spokesperson for Unity Law who represent Paulley, says he would have lost the case as he would not have been at a substantial disadvantage to other travellers. It was the waiting, and the stress incurred, that led to the judge's decision.

Now, First Bus have appealed against that decision, and it has reached the Court of Appeal. They are arguing that they made reasonable adjustment to allow wheelchair users access by providing the bays, and that it was not a requirement for the driver to move the mother.

They want legal clarity on whether this should be a driver's role. It is a precedent-setting case that, if First Bus lose, would result in drivers having a legal requirement to move people from that bay if a wheelchair user needs it, and it would stretch further too, for all bus companies and trains across England and Wales.

Pushchairs could be folded, but Sally Whittle, a mother and writer of a blog called Who's The Mummy? explains that it is not that simple.

"Public transport is not a joyous experience at the best of times, but if you're travelling with a young baby in a pushchair there might be all kinds of reasons why it can't be collapsed," she says.

Doug Paulley Doug Paulley says disabled people fought hard for access to buses in the first place

Some pushchairs, such as parent-facing ones, are not designed to collapse. If there are items underneath then it can be tricky, and pushchairs and prams can be extremely large. As Whittle says, "if you do collapse it the question is often, where do you put it?"

Muller thinks there is a risk of prioritising one group and excluding the other. "The issue should really be about equality of access for everybody," she says.

It is a fact that more parents with pushchairs and people with large suitcases regularly use buses than wheelchair users so a change could affect many, but for Paulley it is important to push as far as necessary for equality, to ensure that the protection of disabled people continues.

"These bays were designated as wheelchair spaces and they happened because disabled people protested and chained themselves to buses in the 1990s," he says. "If that space isn't available, that person can't travel."

For Whittle, Paulley and Muller the onus should be on the bus companies to provide suitable transport for all, but if First Bus lose their appeal it will be a landmark decision for disability rights.

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The blind sculptor who carves by touch

Felice and Simona Atzoril who was born without arms Felice Tagliaferri and Simona Atzoril, who was born without arms, working on the Cristo Rivelato

A blind Italian sculptor thinks people should have the right to touch art, though most exhibitions forbid it.

Felice Tagliaferri has a personal motto: "you are forbidden not to touch". It's about making art inclusive to everyone through the use of all five senses and stems from an incident which started a mini revolution.

While holding an exhibition of his work in Naples six years ago, Felice Tagliaferri took the opportunity to visit a beautiful sculpture in the city. The Cristo Velato, or Veiled Christ, was created by the sculptor Giuseppe Sammartino in the 18th Century and is much revered. But, as with most artworks on public display, the gallery wouldn't allow the public to touch it - a problem for the blind Italian who can only appreciate art by feeling it.

Though he explained this, and that he was a professional sculptor who wouldn't damage the piece, he was still refused.

"I left disappointed, not experiencing the sculpture in any way," Tagliaferri says.

It was this incident which inspired the blind artist to create his most important piece to date - his own accessible version of the statue which he named the Cristo Rivelato (Revealed Christ). Far from having a hands-off policy, Tagliaferri encourages people to touch the statue.

It proved a huge success, with busloads of blind and disabled people travelling from around Italy to visit his creation, and, at the beginning of the project, disabled people also took part in carving it.

Its popularity reached as far as the Vatican, with Pope Benedict XVI touching the marble statue during its 2011 tour of Italy.

Felice's Cristo Velato
Somebody touching Tagliaferri's Cristo Velato

But for Tagliaferri the most important impact his sculpture had was that the Sansevero chapel where the original is kept, finally allowed blind people in to touch it. He says: "We had helped make this place accessible for blind people, and that was a big moment."

But without getting permission to touch the original in the first place, how was Tagliaferri able to recreate it?

In the first instance, friends created a 30cm miniature version in clay so he could feel its shape and proportions. As well as this, Tagliaferri collected information from other sources to build a more detailed picture in his mind. "People who work in museums gave me a very accurate description," he says.

Then he had to fundraise to get the $21,910 (£17156) required to buy a four ton piece of marble. City councils in the north of Italy, as well as the Italian Union for the blind and visually impaired were supportive and quickly Tagliaferri was able to continue with his ambition.

Next, to get a sense of the size it needed to be, he measured a friend lying down on top of the marble and marked the surface with a hammer and chisel.

"Then I just started chipping away, bit by bit," he says.

People in Tagliaferri's workshop

The result is quite outstanding and shows remarkable skill. The smooth finishing and delicate carving has been complimented by renowned sculptures across Europe. For Tagliaferri it isn't surprising, it merely shows that you do not need sight to create art.

"I must have a clear idea in my mind of what I want to portray," he explains. But it is an idea of form that he mentally conjures, not an image. It's now 30 years since the artist went blind and he says his visual memory has faded to the point where it is just "an illusion" to him.

In his studio, in a deconsecrated church in Bologna, aspiring sculptors - disabled and not - travel to Tagliaferri's popular workshops. It has become the main reference point for people in the north of the country pursuing disability art, he says. Anybody can attend. Anybody, that is, who wants to experience "tactile art". Part of the session is conducted with blindfolds on, a lesson in "discovering that they can see with their hands, rather than their eyes," he says.

The sculptor went blind at 14 but doesn't really talk about how or why, saying the story behind it isn't important. "It doesn't matter how, it matters how I am without sight, the kind of person I am," he explains. What he does say is that for a while he found it difficult to come to terms with. "I went through a difficult period that lasted for two years, before I realised I had a choice."

The choice, he explains, was to either "stay behind the window looking out at others living their lives, or open the door and go outside and live my own life." He chose the second path, the much more difficult and challenging one, he says, but the one that has made him happy.

Find out more

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

Before training as an artist, Tagliaferri worked on the switchboard of Bologna's municipal building, a job which he describes as irritable: "it paid the bills but little else".

An opportunity then arose. When a sighted sculptor wanted to understand how important sight is to his craft, he invited four blind people - Tagliaferri included - to his studio for three sessions. "For all four of us it was the experience of a lifetime," he says, "but for me it was life changing.

"I understood I could express myself through sculpture, the images in my head, my dreams, my thoughts, my childhood memories, and I could show them to the world."

Tagliaferri was hooked, and once the experimental sessions were over, he asked to be taken on as an apprentice, was accepted, and stayed there for the next two years.

"I spent the time trying to steal his deepest secrets," he says, "and then, I started out on my own, full speed ahead".

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The hearing aid chair fit for a king

the chair

A chair which doubles as a hearing aid is the centrepiece of a new exhibition, part of an international disability festival in the UK.

Thought to have been one of the first of its kind, an ornate chair from the 19th Century designed to amplify sound is part of a new collection on display in Liverpool.

The origins of the chair are unknown but it is an exact replica of one made for King John VI of the short-lived union known as the United Kingdom of Portugal, Brazil and the Algarve. He was hard of hearing, and, realising he needed a device to help him communicate better, he commissioned specialist craftsman Frederick Rein to make him an acoustic chair in 1819.

Rein was based in London and, in 1800, had set up what is believed to be the first firm producing ear trumpets, so was thought to be the most appropriate person to help.

As the chair had been commissioned for use by royalty, when Rein was making it he had to think about how to reflect the important status of the user in its design. Hollow arms were carved to represent the open mouths of regal-looking lions, which also acted as sound receivers a little like trumpets. The sound travelled to the back of the chair, where a tube, placed in the king's ear carried the sound to its final destination.

A modern day version of the same idea is used in the benches in the House of Commons which have loudspeakers inserted in the head rests so MPs can follow discussions more easily.

The king is thought to have used his acoustic chair when holding audiences with noblemen and commoners during his time living in Brazil. This custom was called 'beijo-mao' and made the king very popular, so it was important that he could hear and respond to the concerns of his people.

A picture of the chair from the back with the tube in view Sound was carried out the back of the chair by a tube
A picture of the hearing end of the tube The tube was placed in the user's ear

It is believed that King John used the chair to aid his hearing until his death in 1826 whilst ruling from Brazil.

Going forward, acoustic chairs became more popular, but didn't really make it into the mainstream. By 1836 John Curtis was writing in his book Treatise on the physiology and pathology of the Ear: "The acoustic chair is intended for the benefit and use of the incurable deaf ... By means of sufficient tubes, this chair might be made to convey intelligence from St. James's to the Houses of Lords and Commons, and even from London to the King at Windsor," and so was perhaps imagining what would later become the telephone.

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What else can you see at the exhibition?

Exploring how people negotiate everyday activities differently, the Art of the Lived exhibition is part of the biennial Dadafest in Liverpool, celebrating deaf and disabled art.

It features sculpture, film, installation, painting, prints and performance work and asks questions such as: how can people negotiate everyday activities?

This year's collection builds on themes from the last international DaDaFest exhibition in 2012, Niet Normaal, which questioned what 'normality' is.

Here are a selection of some of the other works from the exhibition.

Gold Lamé

For this exhibition, artist Tony Heaton has taken an Invacar - a small car issued to disabled people in the 60s and 70s by government - and has transformed its image and status.

The Invacar was a cheap mode of transport that was a response to the lack of access for disabled people to public transport. With an unlined fiberglass shell and a single seat, the vehicle had only three wheels and space for a folding wheelchair. It was just 9'9" long and 4' 6" wide.

The Gold Lame Invacar hanging from the ceiling

The single seat meant you had to travel alone. Heaton says that for many disabled people at the time, its design insinuated that "you had no friends, family, lovers. the solitary cripple." It was painted with a pale blue which the artist says became known as "spazz blue".

The lightweight slow speed vehicle was banned from motorways, on which could be seen signs that read "No Invalid Carriages". The Invacars were eventually banned from Britain's roads in 2003 due to safety concerns, and like all icons-of-old can now only be seen in museums.

Heaton has transformed one Invacar from "spazz blue" to gold for this exhibition, turning an object of ridicule and little value into something of value.

Walking: Liverpool 2014
A still from the film Walking: Liverpool 2014. Katherine Araniello in her wheelchair on Liverpool's Albert Dock

Katherine Araniello's video is a new commission for DaDaFest International. It follows her as she negotiates the cobbled streets of Liverpool's Albert Dock in her wheelchair for a distance of 80 metres. While the distance takes an average walker 1 to 2 minutes, the same journey took her 22 minutes. She says that the video presents a display of exploration and self-dependence. "No assistance is offered from passers-by, and no assistance is expected," she explains.

Ship of fools

James Leadbitter, who works under the pseudonym of The Vacuum Cleaner has reworked his film 'Ship of Fools' for the exhibition.

The film follows Leadbitter as he turns his flat into a mental health facility and detains himself for 28 days. After being told by his doctor that he needed inpatient care in an acute ward, Leadbitter was determined not to have the same negative experience he had had in the past so instead he wrote his own mental health act and over the next four weeks invited artists to come and spend time with him in an "attempt to find creativity in madness." The resulting film tells the story of what happened, and how it worked.

Art of the Lived Experiment is running until 11 January 2015 at the Bluecoat in Liverpool as part of DaDaFest.

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Disability art helps playwright feel 'safe'

Sean holding a nut

Sean Burn learnt to express himself through art while being treated for mental health problems. But, as he tours with a new play, he says that art which challenges audiences about disability is now discouraged.

In his work, artist and playwright Sean Burn likes to play with ideas around mental health in order to open up the subject. During one live art piece, He picks out nuts from a sack of walnuts and asks the audience: "Cracking up?" before breaking it open with his hands. "Then I offer the nut flesh to the audience," he says - and slowly a conversation opens up about mental ill health.

Burn says this approach allows him to "reclaim" the "ridiculous" phrases that people of mental ill health sometimes get called: "like nutter and nutcase".

"Nuts are very beautiful things," he says, "they feed you and they nurture you."

Burn has turned his hand to various art forms over the years, from poetry, to film-making, to drama. Some of his work features all three disciplines and his latest play is a monologue from a female psychiatric patient. Collector of Tears draws on his personal experiences of the mental health system. It features a sequence where the protagonist is under section, as Burn himself once was. "She has her ribs broken and they force-feed her an anti-psychotic drug," he explains.

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I feel at home within the art world, I feel quite safe there but I also want to push boundaries and ask questions and so on”

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The Newcastle-based artist has always written but he says that the catalyst for sharing his work was that enforced spell on a psychiatric ward 12 years ago, which he found very traumatic.

He spent seven months there and wasn't permitted to write when he wanted. When he was allowed, he says the results were immediately confiscated.

During his time there, Burn became fed up: "I thought 'I have a voice and I want it expressed, I'm not going to be polite any more and wait for my turn'," he explains. He says he craved equipment like charcoal or a camera with an inkjet printer so he could be creative.

Burn had been hospitalised many times before this occurrence, but has not been sectioned since. His mental health remains fragile and he describes himself as a service user. He feels safe, he says, when creating work and collaborating with artists.

"I can sit in a theatre in the dark and write and talk to actors but actually, having to go out the front door and deal with the public and the pace of life and buses and trains and shops and ordinary, normal, so-called 'every day life', that's when I start seeing things and hearing things and all that stuff sort of comes at you.

"I feel at home within the art world, I feel quite safe there but I also want to push boundaries and ask questions and so on."

a pack of nuts with a label saying "nutcase (a) prototype 2010 s.b" Sean Burn likes to query the language used to describe mental illness

His latest play is a love story spanning four centuries. The main character, Tanya Sealt, is unable to cry and can't die until she does. She witnesses many historical events over her long life and collects the tears of those she meets along the way in glass bottles. On stage she opens each bottle before telling the story behind the tears inside. Release comes when she sheds her own tears of joy on 22 November 1990, on learning of the resignation of prime minister Margaret Thatcher.

"Tanya is there when they first bring televisions on to the ward, which she says jelly your brain," Burn says, explaining this is taken directly from his own experiences. "Watching television does my head in," he says. "All these scenarios start playing out and I don't know what's real and what isn't."

Two of his coping strategies are lying down in darkened rooms and wearing headphones, but he says that it's being an artist which has helped keep him stable.

Art by disabled people is sometimes thought of as being a therapeutic pursuit and so dismissed as lacking in merit. But Burn says that showing it to an audience and communicating things to them about mental health means it is more than just personal therapy.

Madi Macmahon as Tanya Sealt collector of tears

"There's that traditional model of a pyramid," says Burn. "At the top are the great artists and at the bottom is art as therapy." But he doesn't see art as a hierarchy, preferring to think of it as "bandwidth".

"It doesn't matter which strand you're occupying, it's completely legitimate," he says, urging that people should try and express themselves without trying to be a great artist.

Those close to the subject have long debated what they see as an important difference between "disability art" and "art by disabled people". Burn places his work firmly in the disability art category which he defines as "art by people with disabilities that talks about disability, or raises debate, or puts it in the public somehow". He considers disability art to be part of the mainstream, saying: "It belongs on the streets, in galleries, everywhere".

But he has noticed what he sees as a lack of commitment to the kind of disability art from those who have previously given funding to it.

"Over the last three or four years the Arts Council seem to be saying, don't be so 'bolshy' or don't raise your head above the parapet," he says.

He says there is now a lot of pressure on disabled artists to include non-disabled people. As a result, he says, some work is now "so inclusive that it's meaningless in a way".

Sean Burn's Collector of Tears is at Bristol Bierkellar on 6 November and Wolverhampton Arena on 7 November.

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Untold stories of deaf people in WW1

Deaf Munitions Workers

This year has seen many commemorations of the centenary of World War One. It was one of history's deadliest conflicts, claiming millions of lives. Stories featuring deaf people of that period have remained largely hidden but have been pulled together by See Hear ahead of Remembrance Sunday.

When the war broke out, sentries were deployed across the country and security was tightened. But many deaf people were unaware of the new rules ... and paid for it with their lives.

"Deaf people walking along the road were told to stop by sentries. But when they continued to walk, they were shot," says historian Norma McGilp, who is herself deaf and has been researching a book about the experiences of deaf people in World War One.

"There are a number of stories about deaf people being randomly shot while walking home from work, cycling or generally getting on with life," McGilp tells See Hear.

Reports like these peppered the pages of local and national newspapers at the start of the war but by September 1914, the British Deaf Times had published a set of guidelines warning its readers not to go out walking alone or near railway lines, stations and public buildings, and advised they be accompanied by a hearing person where possible.

Though some deaf people became unforeseen casualties of home front security, evidence has also emerged about how many were involved in the country's war effort.

In London, a deaf volunteer battalion was reported to have been trained in drill and tunnel digging and a number of deaf people were employed in factories as munitions workers - making and testing shells, fuses, and manufacturing everything from tools through to wheels.

Fred Morffew Frederick Morffew was discharged from the army because of his deafness

Despite strict rules barring people with hearing impairment from serving as soldiers, a number of deaf people made it to the battlefield.

Harry Ward joined the Royal Munster Fusiliers and did his basic training in Ireland, at the Curragh Camp.

Private Gomer Jones was profoundly deaf since early infancy and had no sight in his right eye. According to press reports of the time, Jones was the best marksman in his company and a skilled soldier, indistinguishable from his fellow fighters.

Frederick Morffew, a deaf road worker from Petersham, was determined to make it to the battlefield. Surprisingly he managed to pass a medical and joined the army in May 1915. Records show that he served for around six weeks before being discharged on account of his deafness. Undeterred, he joined the labour corps and was posted to France.

Until recently, the family had no idea of the lengths he had gone to in order to support the troops, his granddaughter Eileen Allen told See Hear.

"You were a hero, and I salute you, because I think you must have been some special sort of person. I'm glad that you were in my family," she said of her granddad Fred.

Whilst over 700,000 British soldiers lost their lives in WW1, it's estimated nearly two million were left disabled. According to Peter Brown, a deaf historian at City Lit, an adult education college in London, approximately 30,000 of these soldiers were deafened. Around the country, 31 centres were set up to teach them lip-reading and re-integrate them into society.

Find out more

See Hear titles

See Hear is broadcast on BBC Two at 10:30 BST on Wednesdays - or catch up on BBC iPlayer

Our knowledge of deaf people in the Great War is limited to newspapers, deaf periodicals, military records and photographs. Film cameras were not widely used, so there is no recorded history, signed or spoken, from deaf people themselves.

Deaf filmmaker Julian Peedle-Calloo re-imagines the unique situations deaf people faced in the era with his new 30-minute drama Battle Lines, made for the deaf online TV channel BSLZone. A period drama set in a small village during wartime, it follows a deaf man who desperately wants to fight but is instead treated as an outcast by his neighbours.

"Many people are under the impression that deaf men were fortunate to not serve in World War One due to their deafness and so had a lucky escape," Peedle-Calloo says. "I wanted to show that they were far from lucky.

"Deaf men wanted to be able to serve their King and country and do their duty as part of the war effort and they were denied this opportunity. They were rejected by the army and rejected from their communities for their perceived cowardice - a double punishment," he says.

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Find out more
British soldiers in trench

Life at home during World War One

How did so many soldiers survive the trenches?

Did shell shock makes us serious about mental healthcare?

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See Hear's programme about World War One airs on 5 November on BBC TWO at 10:30. Battle Lines can be seen on television and online from 10 November at BSLZone.

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Disabled students: Your feedback

A man in a wheelchair looking at his laptop with a woman sitting next to him.

Following our disabled students series, we asked readers to share their good and bad memories of university life.

Moving away from home to university and starting out as a disabled student can take a lot of organisation and confidence, raising questions like: Will I be able to get around campus? Will other students include me? How will I employ and manage assistants or carers?

Many present or former students have contacted BBC Ouch to tell of their own experiences. Here are a selection.

One of the main concerns that came out of the series was that disabled people worry about making friends when they start at university. Will they understand their disability? Will they be included or excluded?

@amancalledalex had no problems making friends. "Loved uni. Made loads of good friends ... Disability was never an issue," he tweets.

But Eleanor Hawkins found it more difficult. She says: "For me, university was a very lonely experience." She was the only person on her course with a disability and felt "isolated". She says making the effort to be accepted was exhausting. "My carers became my friends and made some of my time enjoyable."

Having the correct equipment needed to study at university was high on the priority list of many.

Lizi Tizi Jones comments that prior to university she hadn't really considered the equipment she would need. "Didn't really class myself as disabled until I started to struggle at uni mainly because my chronic pain conditions aren't visible," she says. A friend told her about DART (a project that aims to improve assistive technology) so she went along for an assessment. "Have been blown away by the equipment I've received," she says. "I can even study from my bed with a folding laptop desk and voice software, and get my books on Kindle so they aren't too heavy! I do a lot of study in the bath now as it eases my pain!"

But Liam Hannock got in touch to say that getting the support you need can sometimes be tricky. "Been to university twice, once in the 90s and again this year. You'd think 17 years on, support would have improved, in my experience it had got worse," he says citing unusable IT as a particular problem. He adds: "This was not helped by student finance continually holding up my DSA [an equipment and support grant for disabled students] over petty things." He concludes: "I lasted three weeks and have transferred to the open university."

Arunima Misra BBC Ouch's past student Arunima Misra told us how life has been since university

For Jenna Power university has ushered in a new feeling of acceptance. "I was astonished at the difference between school and university," she says. "My school was absolutely awful regarding my disability which developed when I was 15 (it is invisible and they assumed I was making excuses because I was still doing well) whereas my university was endlessly supportive."

The experiences of past students navigating the job's market got a lot of people talking. Catching up with past BBC Ouch students - who kept diaries on the site in the last decade - revealed that many have struggled to find work despite having higher level qualifications under their belts. Readers have been in touch to say they had experienced the same.

Eleanor Hawkins says paid work has become an "obsession" for her. "People treat you differently when you work, they somehow seem to have more respect for you, that despite all the barriers you face as a disabled person, you have managed to get a job."

And @dcreilly2010 tweets: "I got my MSc years ago and never got work."

@LauraFalder wrote in to say that she had already been told at university that she was not as employable as she had hoped. "During my degree I was told I wouldn't get the job I want and feel it was a complete waste of time!"

Some people were keen to share their positive experiences of finding work after university - relating more with past BBC Ouch students Sara Krishan and Arunima Misra who now work in physiotherapy and investment banking respectively.

Amy Louise Nettleton says that while university was a challenge she "loved it" and hasn't stopped working since. "I am self employed with a portfolio of well paid contracts within the arts," she says. Being tetraplegic due to a muscle disorder with daily seizures hasn't always made it easy for Amy and she says she had to go out and make opportunities for herself in the beginning. But she feels she has to "play down" her disability.

Blind ex-student Yan Kit Chan emailed to say he has been working ever since leaving university and now heads up a team of analysts in Brighton. He thinks it's important for the younger generation of disabled people, particularly blind people like him, to know that they need to "work much harder if they are to achieve the same thing as everyone else."

The overall experience of the disabled students who got in touch was that while it is quite possible to have an enjoyable time at university as a disabled student, it's important that support is readily available, and that more is done to help some disabled people find work. Do you agree? Keep the comments coming and we will update this page soon.

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The blind man leading the blind orchestra

The Inner Vision Orchestra with their instruments Baluji Shrivastav (front, right) leading the Inner Vision Orchestra

Baluji Shrivastav is one of the music world's most in-demand sitar players. Blind since the age of four, he's now leading an ensemble of blind musicians.

Baluji Shrivastav has played on Top of the Pops five times, accompanied Stevie Wonder in Hyde Park and, in 2012, performed with Coldplay at the Paralympics closing ceremony. You can hear his sitar clearly in Massive Attack's famous song Teardrop, and he has recorded with many other acts, including Annie Lennox, Oasis and Kaiser Chiefs.

In 2010 Baluji (known by his first name alone) set up the Inner Vision Orchestra, - specifically to give paid work to fellow blind musicians, and partly because he wanted to address some of the confidence problems suffered by others in his position. They perform regularly together and now, he says, members are getting further professional jobs as solo musicians.

One of Baluji's aims was to show the world that the ensemble can play music better than many sighted people - he says you have to be very good to get where his orchestra has got to.

"Inner Vision members can play in sync successfully without relying on eye contact or even a conductor," he says. It's a skill which impresses sighted musicians, for whom a visual connection is crucial to get their cues. "As we have been practising more and more together, our understanding [of one another] is developing further and further." They remember the order of play and if in doubt Baluji leads. Rather than rely on a conductor, one musician starts each piece and the rest follow his or her tempo. "I don't say anything about what instruments there are or what a musician is going to play. They have to tell their own story."

Baluji's story is itself extraordinary. Born with sight in the northern Indian state of Uttar Pradesh, he was diagnosed with glaucoma at eight months old. At the time, a neighbour told his mother she had been able to cure her own eight children of the same eye condition with her homemade opium-based remedy, and wanted to try it on Baluji.

"She put the medicine inside my eyelid and bandaged my eyes for three days," he says. "But when the bandage was taken off, there was a lump in it. My mother asked what the lump in the bandage was, and the neighbour told her 'it's dirt, throw it away'." But the lump was in fact Baluji's eye and with the other one also damaged, he went blind soon afterwards.

Baluji says his mother realised he was a "born musician" when he started singing at 18 months old. She taught him to play the harmonium, an organ-like wind-powered keyboard used in Indian music.

Baluji was educated at the Ajmer Blind School for boys 300 miles away in Rajasthan. His musical ability quickly shone through - but most of the instruments at the school were made from pumpkin and were incredibly delicate, so children were only allowed to play them in moderation. Baluji was desperate to play more and one day he happened upon a sitar. Despite protestations from his teacher that the instrument was too big for such a small boy of eight, he started to play and immediately picked out a number of tunes. He fell in love, and never looked back.

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I see lots of blind people who don't have any confidence.”

End Quote Baluji Shrivastav

By the age of 10, Baluji was conducting his first non-sighted orchestra at his school, featuring more than 80 musicians. He had to find a way of doing it in a non-visual way and hit on the idea of using a xylophone where each note he played conveyed a pre-arranged instruction.

The emerging virtuoso went on to gain two music-related degrees but when his family lost their lettings business he put his work on hold to help them. So they could continue to earn a living, he taught them to weave cane chairs, a skill he had learned at the blind school. In his 20s, Baluji did a masters degree in sitar before moving to France and then later to the UK.

While he says the attitude to blindness in Asia is not good, it was the negativity from his family and community that spurred him on to, in his words, "show them that being blind is not a curse but a boon". He believes he wouldn't have fulfilled his musical potential, pushed himself forward or gained such positive attention if he hadn't lost his sight.

In contrast to the positive spirit he forged in northern India, Baluji is concerned by the attitude of some blind people in the UK. "I see lots of blind people here who don't have any confidence," he says. Though many might disagree with his assessment, he thinks they may have become a bit "lazy" because they receive "too many benefits and comforts".

Baluji with his sitar.

A recent tour has taken the Inner Vision orchestra to small venues all over England by minibus and public transport. This can present logistical challenges, says Baluji says. The musicians have had problems with taxi drivers refusing to take their guide dogs, and one dog's tail got caught in a taxi door when it closed.

But assistance is necessary for Inner Vision members to be able to work optimally and each person has different needs. "Some of our musicians were born blind but some went blind at a later age and need more help," says Baluji. "We need volunteers to take care of them and to look after guide dogs while their owners are on stage performing."

The Inner Vision Orchestra has just finished a UK tour and recently reached their £10,000 target on a crowd-funding website to make a film about their work. Watch the trailer on YouTube.

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Tips for a disability-friendly Halloween

Two girls Amelia and Imogen Hall are of restricted growth and love dressing up for Halloween

Traditionally Halloween is an occasion for children to dress up in colourful costumes, but what extra considerations are there for families with disabled children?

Beyond deciding which houses to trick or treat at and what face to carve into the pumpkin, families with children who have autism, learning disabilities or physical differences have more to consider when it comes to Halloween. But they know from experience how to get around untypical body shapes, the importance of routines, and special diets to make it work and still have fun. Here are some tips for getting the most from the occasion.

Be prepared

This is particularly true for some children on the autism spectrum, for whom routine is all important. Like all other changes to their daily schedule, 31 October has to be anticipated and planned for well in advance. "One way you can do this," says blogger Jane McDowell, "is to have a calendar, and count down the days to Halloween with your child." McDowell writes the Ask-Pergers blog with her son Paddy-Joe, about life on the autism spectrum. If the child likes to know as much as possible about everything, she says, "it can be really helpful for them to learn lots of facts about Halloween such as where it originated from, and why it is still celebrated today."

Explain why people wear costumes

"My children used to be scared of masks and anyone dressed up," says Claire Ryan, who has a son and two daughters on the autistic spectrum. "So we talked to them about dressing up and that the person underneath stayed the same, that it was just how they looked that changed."

The Ambitious about Autism patron says that letting her children dress up at other times of the year in outfits of their choice also helped them to understand the costume concept.

Children with sensory issues can find certain materials and labels scratchy or uncomfortable. The same goes for wigs, masks and face paints. Getting a costume early allows children to get used to how it feels against their skin. Ryan's children sometimes wear pyjamas underneath. Alternatively, say the McDowells, "make a costume from clothes that the child is used to wearing so they feel more comfortable. For example, take old leggings and a T-shirt and tear them to make a zombie costume." If wearing masks is troublesome, they say, "use one on a stick that they can hold in front of their face as and when they want to."

Amputee Josh Sundquist dressed as a flamingo with the head on his one leg, using crutches he puts himself upside down to reveal the flamingo's head This picture of amputee Josh Sundquist went viral last Halloween
Josh Sundquist as a foosball player Josh hopes this year's costume proves as popular
Could the disability be part of the costume?

US motivational speaker and soccer player, Josh Sundquist, takes advantage of his unique body shape when designing his now famous Halloween costumes. As an amputee, he says he avoids the "obvious ones like shark attack victim or pirate". In 2013 he dressed up as a flamingo with his one leg acting as the bird's neck and bill.

Sundquist wasn't always so confident. His top tip is to make sure that the child is "in a place psychologically where they are comfortable expressing their disability through a costume".

He lost his leg to cancer as a child and said that back then he wore a prosthesis all the time and was "scared that people would find out I have one leg. Now I'm at a point later in life where it is part of who I am and my costumes celebrate it."

Twins of restricted growth Amelia and Imogen Hall love every aspect of Halloween, especially getting dressed up. "The girls are nine, but we might get them something from the three to four age group," says Dad Phil on finding things to fit. "This year they've picked Morphsuits (all-in-one bodysuits), which are a bit long for them in the arms and legs." He says that even though he and his wife warned the twins that the costumes might be a bit big, "they love them and they look very cute in them."

Daisy dressed as a witch carrying her treat bag Daisy can't eat the treats she gets as she is tube fed, but she still enjoys giving them out

Hall's top tip is to give children choices. He says that the family doesn't "necessarily steer clear of" traditionally small character costumes like elves but, he says, "Amelia and Imogen just want to do everything that any other child will do, irrespective of restricted growth, so we try to make everything as normal as possible. And if they wanted to dress as a Minion from Disney's Despicable Me? Then fine," he says.

When it comes to trick or treat, be flexible

Daisy Nimmo has physical and learning disabilities and major health problems. Her mum Steph says that it's important to let friends and neighbours know that it's OK to call because "Daisy can't go out but she loves to answer the door in costume and hand out sweets." In their street, a pumpkin left on the doorstep indicates that the occupants are happy to accept trick or treaters. Their plan for this year is to carve a wheelchair symbol into Daisy's pumpkin.

As a mother of a child on the autistic spectrum, Claire Ryan says it's important that children aren't forced into participating in Halloween frivolities. "Let your child engage with Halloween at their pace in their own time," she says. "They may never want to take part and planning a different activity to do on that day and evening could be a much happier and calmer experience for all involved."

Email your tips for doing Halloween with disabled children to ouch@bbc.co.uk and we will update throughout the day.

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Will changes to disability work grants affect deaf people the most?

Access to work forms

It has become a crucial contribution to the working lives of deaf and disabled people but do new changes to the Access to Work scheme affect deaf people in particular?

Access to Work celebrates its 20th birthday this year. The scheme pays grants to deaf and disabled people in work - providing them with the equipment and support they need to do their job.

Helping these groups to work rather than live on benefits makes economic sense according to the Sayce Report in 2011. It calculates that for every £1 spent on Access to Work, the Treasury recouped £1.48.

"It actually brings money back to government," the author of the report, Liz Sayce OBE, told See Hear, "because people work, pay taxes, receive less benefits. But it could be so much better."

In the last 12 months, however, many say it has stopped being as helpful as it once was.

Disabled people report they have had their support packages reduced, or not renewed. Deaf people in particular have seen the introduction of new guidelines restricting the funding they receive for sign language interpreters in the workplace.

So how crucial are interpreters at work?

Every deaf person uses interpreters differently. Some prefer to have them in the office every day for phone calls, office conversations, and meetings. Others book them for specific events, or they might choose another method of communication support such as a palantypist who uses a computer to translate speech into text.

Two years ago Jenny Sealey, Artistic Director of Graeae Theatre Company, co-directed the opening ceremony of London's Paralympic Games to great praise. She achieved this with the support of full-time interpreters through the Access to Work scheme.

Since her three-year agreement ended, Sealey's work needs are now assessed monthly which makes it difficult for her to plan ahead. Her interpreter allowance has been cut by 53%.

Start Quote

Some interpreters through Access to Work were receiving over £100,000 a year”

End Quote Stephen Lloyd MP Chair of the All Party Parliamentary Group on Deafness

"My team and I have spent so much time on my support alone," says Sealey. "The application, the ongoing support, the international projects, the reams of extra information they've needed, the rejection, the reconsideration, reapplication, the re-rejection, the complaint, and now, finally, I've been told I can reclaim the support that the company has paid out for me since April."

And interpreter support for Sealey's work abroad has been cut completely. International work currently includes supporting circus training for deaf and disabled people in the UK, Rio and São Paulo and hopes to be involved in the consulting team at the Rio 2016 Paralympic opening ceremony. She is also involved in training and creating co-productions with disabled people in Bangladesh.

"I am the CEO of an international theatre company and am being told that applications are being rejected as they are about my personal development," she says. "It misrepresents and distorts the nature of these applications and my work with the company."

The Department for Work and Pensions (DWP) told See Hear: "Access to Work is a grant and we want to ensure that all customers' needs are met whilst at the same time providing best value for money for the taxpayer."

They say the purpose of the scheme is to support disabled people to enter and stay in work, and this can also include self employed people. DWP add: "Access to Work staff are specially trained and receive extensive coaching to provide the best service for customers."

However it is alleged that some staff who process Access to Work applications have demonstrated poor awareness of disabilities and the support they need. Advisors have admitted in emails to clients that a major restructure has led to delays in dealing with applications.

See Hear has learned from the Public and Commercial Services Union that many staff in the department felt that they had inadequate training to do their job.

Why are all these changes happening? Liz Sayce believes it is evidence of "the Government going on a real cost-cutting drive."

With a number of high profile court cases alleging fraudulent invoices for interpreter hours others believe the recent changes are simply an attempt to curb abuse of the system.

Dame Anne Begg Dame Anne Begg is chairing the current inquiry into Access to Work

With British Sign Language interpreter charges running to £45 or £50 an hour or higher, ministers have previously expressed concern over the cost. Though deaf people themselves may not be paying, there is further concern that interpreters are often paid significantly more than the person they are interpreting for.

Stephen Lloyd MP, chair of the All Party Parliamentary Group on Deafness, himself deaf and a beneficiary of Access to Work, told See Hear: "Some interpreters through Access to Work were receiving over £100,000 a year."

"As soon as the government realised that," says Lloyd, "that's when they thought, 'hang on a minute, this is not a good use of funds.'"

See Hear could find no evidence of individual interpreters earning over £100,000 but Lloyd's office clarified that he got the £100,000 figure from the previous disability minister Mike Penning who brought it up in response to Lloyd's concerns about the changes in the scheme. They say the minister stressed it was only a few people, but there is evidence that a number still earn over £60,000 to £70,000 a year. Lloyds office says: "The DWP does not feel this is what ATW's main purpose is, which is what necessitated the change."

Find out more

See Hear titles

Interpreting organisations dispute Lloyd's figure, saying that it does not take into account costs of training and freelance expenses - nor do interpreters work every day of the week. Being freelance, they have rainy days of their own to budget for.

The Work and Pensions Select Committee which supervises the work of the Department of Work and Pensions, is currently investigating. When a call for written evidence was launched earlier this year, a record number of submissions were received.

According to Dame Anne Begg, currently chairing the inquiry, 80% of those submissions came from deaf people or sign language interpreters - yet of the 15 invited to give evidence to the committee in person, only one has been deaf.

The current Minister for Disabled People, Mark Harper MP, has recently met with the CEOs of deaf charities including The British Deaf Association (BDA) with the aim of finding a better way forward. BDA chief David Buxton says "the government needs to think of the best way of supporting deaf and disabled people to find work, stay in work and be supported in work."

Harper is expected to testify in the fourth and final evidence session before the Parliamentary Select Committee on 29 October. The session will be subtitled and signed on BBC Parliament.

See Hear's programme about the Access to Work scheme first aired on Wednesday 22 October on BBC TWO at 10:30 and is available via the iPlayer.

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Disabled graduates: Life after university

Ciaran up the Empire State Building with a friend

This week BBC Ouch is revisiting disabled students who we followed in the last decade. Several years later, how are they doing?

Moving away from home and starting out as a disabled student can take a lot of organisation and confidence, raising questions like: Will I be able to get around campus? Will other students include me? How will I employ and manage assistants or carers?

In 2003, Ciaran Gilligan and Sara Butler (now Sara Krishan) kept diaries of their first few weeks at university. They had great fun but since graduating they have had very different experiences. With almost 50% of disabled people unemployed, how have they fared in the job market?

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Ciaran Gilligan

30-year-old Ciaran lives on his own in a flat in Leeds. He has cerebral palsy and is a wheelchair user. In 2003 we followed him as he started at Manchester Metropolitan University studying English and creative writing. He says he really enjoyed his time at university and graduated with a 2:2. "I didn't particularly work very hard but that wasn't really the main point of going," he says. "It was a means to an end for me and I made lasting friendships there."

Ciaran sitting beside a swimming pool

He has since done voluntary work for Samaritans and written concert reviews for a local website but has not found paid employment since leaving university.

He wants to become a copywriter and he aims to be self-employed by this time next year. "It seems the best route to go down in my circumstances," he says.

Juggling agency care workers to help him up in the mornings and to get food is "a job in itself", says Gilligan, who thinks it would be difficult to always turn up for a 09:00 start if carers let him down. "I'd quickly get fired," he says.

This year he has discovered a love of travelling which he's achieved entirely independently. It started off by spending new year in New York. "I went on my own, completely on my own, and couch-surfed with friends I'd met through a Facebook group for people with cerebral palsy.

"It was a big leap for me," he says, particularly as he wasn't sure whether the airline would allow him on the plane by himself. But it went well, partly because he was open with his online friends about the help he would need. "I said I'd need somewhere to stay and someone to help me out with care stuff," he says. A neighbour was able to assist and the apartment was accessible, so it worked out. He's been to New York three times this year now, and once to Tenerife.

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Sara Krishan

Sara Krishan is 29 and lives in Birmingham. She has albinism which causes low vision. In 2003 she started at Birmingham University. We followed her as she was beginning a BSc in physiotherapy. She is now married and has a two-year-old son.

Sara with her baby

It's been eight years since she graduated and she has been in employment ever since. She puts this down to her course choice and is pleased she took physiotherapy. Her first job was in a hospital where she was a junior and rotated through different departments - outpatients, elderly care, stroke patients and respiratory, giving her good all-round experience at the start of her career.

She says she looks back on university as a carefree time where she built some really strong friendships. "I went out last Friday night with a load of university friends for a 30th birthday celebration. Everyone still knew I couldn't read the menu in the pub and helped. One of them thought to walk with me back to the train station, but when they think of my visual impairment they think 'whatever'."

She says that, even though a physiotherapist is seen as a stereotypical "blindie" job that everyone appreciates is very "doable", she was discriminated against in interviews initially. "One interviewer told me they definitely wouldn't be able to employ me as they wanted someone quickly and that Access to Work funding wouldn't arrive in time to fund the taxi fares and computer equipment I'd need," she says. But her current employer is "fantastic" she says, with "no whiff of prejudice".

After graduating she got into triathlon racing but found she had to drop that when she started a family. She jokes she is "not interesting" and has "no life" now - "I watch Netflix a lot," she says.

"Being a working mum means I don't have much time for hobbies and spend many hours looking after my little boy."

Catch up with three more graduates who Ouch has followed: Arunima, Darren and Charlotte

Are you a current or former disabled student? We'd like to hear about your experiences of life at university. Email us at Ouch@bbc.co.uk, tweet @BBCOuch using the hashtag #disabledstudents, or get in touch via Facebook

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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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