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24 December 2014 Last updated at 06:54 ET

The girl who never gets full

The whole family

Josie Drake has a condition that means she never feels full. Here, her mother Carolyn talks about the meticulous meal planning that goes into Christmas.

Our daughter Josie is 16 and has a rare medical condition called Prader-Willi Syndrome (PWS) which comes with learning difficulties and sometimes health complications.

Children with PWS have an insatiable appetite and never physically feel full. Some young people and adults will raid the fridge, go through bins or eat frozen food if they can get their hands on it.

Because people with the condition can't convert fat to muscle efficiently, they have to be on a strict and permanent calorie-controlled diet for fear of life-threatening obesity.

Families and carers will have their own tactics to combat this, and whatever works best for them is often the right thing to do. Problems with eating often escalate dramatically as children with the syndrome get older and struggle with semi-independence.

I worry about Josie's future but as things stand she's at a healthy weight and mostly accepts her diet. But at Christmas, with people popping round at odd times for a mince pie, a table heaving with rich foods, and chocolates being handed round (as though rationing has just been lifted), the festivities have the potential to become a nightmare.

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We pile up the meal on a small dish so it looks fuller. We cut food in half and tell her it's twice as much”

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This year we'll do what we always do to dodge a fattening foods disaster - adapt, distract, substitute, and be sneaky.

Josie's meals follow a strict timetable. When she was younger, screaming tantrums would begin if the clock ticked past the allotted serving time. Now she is 16 her response to tardiness is more prosecutorial - I'm in the dock, and she's the chair of the committee on parental failings.

Christmas dinner itself is served at 13:00 at the very latest. Josie gets a festive meal like the rest of us, but every ingredient is meticulously measured and the calories counted. She has one roast potato, two boiled potatoes, the turkey skins are binned, the cranberry sauce is measured. It's Brussels-heavy, and her Christmas pudding is a low-fat version.

One unusually calorific meal means that the rest of her intake that day is shaved down to compensate. Sometimes this means we have to be sneaky.

Josie Drake

We always keep back a bit of her meal so that if there's a dropped spoon disaster, and three peas go on the floor, then three peas get replaced. For her this is fair, and it is important we are fair with Josie's food. She understands there are limits to what she's allowed to eat, and she is determined to have every last scrap of her allocated portion.

We pile up the meal on a small dish so it looks fuller. We cut food in half and tell her it's twice as much. We keep empty raisin boxes and fill them with half the number they'd normally contain so she can have an extra box.

Her six-year-old brother Daniel doesn't have PWS but knows Josie has a special diet, and she understands that he has different versions of food to her. So he'll have chocolate spread on toast and she'll have a smidge of honey - and they're both happy with that.

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What is Prader-Willi Syndrome?

A young boy with PWS
  • It is a rare genetic condition that affects one in 15,000 children born in the UK
  • The cause of PWS is not known, it is thought to happen by chance
  • It causes a constant desire to eat, restricted growth, learning difficulties, reduced muscle tone and a lack of secondary sexual development
  • There is no cure for PWS so symptoms have to be managed

Source: NHS UK

Prader-Willi Syndrome Association

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He'll sometimes sneak into the kitchen with me and ask for a biscuit, and I'll tell him it's OK, as long as he eats it away from his sister so she doesn't get jealous.

Ironically, Daniel is a fussy eater and has to be cajoled, persuaded, and occasionally threatened to eat his meals. So while Josie polishes her plate clean at one end of the table, he pushes the chicken round his plate at the other. I dream of a middle ground.

We really enjoy Christmas. There's a lot of planning but that's second nature after all these years. It's all worth it when I see my daughter's thrilled expression as she catches sight of the glitter tracks in the garden from Santa's sleigh. (I can't think how they got there, and yes, Josie still believes).

But until the big day arrives, we'll be opening our food-safe advent calendar every morning. It's a cloth one with pockets we fill up ourselves with sugar-free sweets, popped in one day at a time, so there's no temptation for Josie to chomp through the lot.

Read more from Carolyn's blog, A Drake's Progress, here.

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'Depression and Christmas just don't go'

Charlotte in front of her tree

On the day many people will be waking up to the prospect of a fortnight at home, blogger Charlotte Walker shares how she plans to take care of her mental health during the festive season.

I have often found Christmas difficult. This year I'm recovering from a mental health crisis which makes seasonal planning particularly challenging. It's common to feel under pressure to create a magical Christmas but if you are already stressed, anxious or depressed, that pressure can be magnified.

I know I'm not alone. Over recent weeks I've seen members of the online mental health community tweet their worries, or even downright dread, as they contemplate the festive season.

My friend Alice encapsulated the problem in a pithy 33 characters: "Depression and Christmas just don't go." But Christmas is here whether I like it or not - and so is my bipolar disorder. To accommodate them both, things are going to have to be a little different.

I'm beginning my plan by letting go of my ideas about what Christmas "should" be like. This can be hard with the build-up starting in early November these days, followed by the newly adopted consumer highs of Black Friday, Cyber Monday and every bipolar's favourite - Manic Monday.

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The truth is that unless I take care of myself I won't have the resilience to cope with the needs of my family”

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Adverts pile on pressure and anticipation for the big day as we see shoppers selecting beautiful gifts and mums producing trays of spectacular food. Meanwhile, magazines and TV shows tell us we should aim for a "perfect Christmas" by making gifts and decorations from scratch.

I've been reminding myself that if I had an appendicitis or a broken leg I wouldn't think twice about the need for a quieter Christmas - but I'm still receiving treatment for a recent crisis and I need to take the best possible care of my mental health.

So perfectionism is out, and a low-key "good enough" Christmas, is in.

Christmas shopping is a problem for me. When I'm high I go on spending sprees and blow the budget, when I'm low I can't face the shops. One strategy I've adopted is to state my boundaries to family and friends. So, as I've been unwell, I've taken the initiative and told most people they will be getting vouchers this year. I'm happy for them to say what kind of vouchers, but the gift-giving is on my terms and otherwise non-negotiable. Not one person has objected (so far).

Charlotte hanging baubles

I've also announced that I'm planning time to myself. As a mum, I often feel Christmas revolves around me: what I buy, what I cook, whether people are enjoying themselves, whether there's enough of everything. Like many who suffer low mood, there are times I try to disguise how I'm feeling.

My children are teenagers now but I still don't want them to know how tough things can be, so I put on a brave face for their sake. Sometimes when I "fake it", I'm pleasantly surprised to find that I enjoy myself after all. Mostly it's a strain, though, and something I can't keep up for long.

I need space to be the real, emotionally messy me with a solo walk in the park, a long bubble bath, or time out in the kitchen with carols on the radio and a mince pie. Sometimes this can feel a bit selfish, but the truth is that unless I take care of myself I won't have the resilience to cope with the needs of my family. It's a bit like what the cabin crew say in the aeroplane safety talk: fit your own oxygen mask and breathe normally before trying to help others.

And finally, I'm trying to count my blessings. It's something I usually hate being advised to do, but this year I think there might be something in it. True, it would be nice if I could feel a little more seasonal joy but I am fortunate - I have friends who will have to rely on food banks if they're going to have any dinner at all, and I know of people who have no choice but to spend Christmas day alone. So I may not be as well as I would like but without excellent crisis care, I could have been spending the festive fortnight in hospital.

My Christmas dinner may not rival Nigella Lawson's, and my gifts might not be original or handmade, but in a month's time I doubt any of this will matter. Taking care of myself over the holidays might just set me up for better mental health in 2015. Now that would be the perfect present.

Charlotte Walker writes the Purple Persuasion blog and is a trainer in mental health first aid.

If you are affected by any of the issues in this article then contact Samaritans who are available 24/7 over the Christmas period on 08457 90 90 90.

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The 'Deaf and Dumb Wedding' of 1940

Wedding photograph

When British Pathé transferred its catalogue to YouTube earlier this year, a long-forgotten film of two deaf people getting married in 1940 was revealed. But who were they?

Beverley in the East Riding of Yorkshire is a picturesque market town, its skyline dominated by the gothic towers of Beverley Minster, where the remains of the town's St John are interred. Given its spectacular appearance, and that John had been adopted by the 19th Century deaf church as the patron saint of deaf people, what better place could there be for two deaf people to marry?

In the summer of 1940, Pathé filmed a marriage between two "deaf and dumb show people" as they are described. After it went online, many deaf people shared it on social media and, curious about such a large wedding with so many signers, speculated as to who the couple were.

In the footage they are both smiling as their family and friends, many from Hull Deaf Club, surround them and fingerspell rapidly to each other. One guest carries a gas mask as the war had just started. It's a beautiful snapshot of a moment in time.

"Their tragic handicap seems quite forgotten in the excitement of the novel occasion," comments the clipped newsreel voice, using words that 75 years later sound more comical than offensive.

The couple were Duncan McKenzie and Nesta Holgate. McKenzie was 34 and came from a family of travelling entertainers - his grandmother, Susannah Mapplebeck was a sword swallower.

He was a widower, a labourer, and true to his roots a conjurer and sleight-of-hand performer.

According to the marriage certificate, Holgate was a 22-year-old spinster and the daughter of a shipyard worker. Both she and McKenzie were deaf.

Pathé films were played in cinemas all over the country, says deaf historian Norma McGilp. They mostly showed events and personal stories, and a deaf wedding would have been a curiosity for viewers at the time. "This was a family gathering where deaf people were getting married and where people signed, which was quite novel," McGilp says.

See Hear decided to investigate the couple further, and, as we delved into their lives, we found a story of happiness and tragedy in equal measure.

Starting with local archives and newspaper reports, we eventually managed to track down McKenzie's great niece Rachel McKenzie. She was already investigating her family tree and helped us find relatives from near and far. We also contacted long lost friends at the Hull Deaf Club, and arranged for them all to return to Beverley Minster.

The reunion event was in July this year and dozens of people turned up. We played the film of McKenzie and Holgate getting married, and projected it onto the altar where they stood in 1940. It was a little like watching the wedding itself.

Nesta and Duncan later in life Nesta and Duncan were together until Nesta's death in 1998

People shared their memories of the couple during the day. We heard how Duncan was known as Popeye because of his pipe, for performing tricks for the children in the family, and for getting into all sorts of scrapes. He had many different jobs, travelling with fairs and sometimes disappearing for days on end.

We heard how he could communicate with anybody and used to hand out fingerspelling alphabet cards to his hearing relatives.

Nesta was remembered as being loving and kind and always making the family feel welcome. She seems to have been more introverted than her husband, and spent a lot of time with her sister who lived next door.

In 1946, six years after getting married, the couple had a baby boy who they called Peter. Sadly it didn't turn out as they might have wanted. We discovered that the child was taken away by the authorities, and later put up for adoption. Unsurprisingly, it was said to have deeply affected Nesta.

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

Family members recall Peter as a young child, but no one knows the reason why he was taken away from his parents. Some remember how neighbours often heard him crying and think it's possible that Nesta didn't know when he was distressed because she couldn't hear him. According to people's memories he was taken while Duncan was away with the fair.

Despite these difficulties, Nesta and Duncan's marriage remained strong. Family members brought along photos which showed them growing old and sharing happy times together until Nesta's death in 1998.

It was on a regular trip to Bridlington in 2000 that Duncan met a sad end, aged 94.

He used to take the train out to the coastal town to buy his favourite brand of vodka. On the way back he fell asleep, missed his stop and was awoken by the police. They couldn't communicate with him and didn't know where to send him so he was placed in the Deaf Institute in Sheffield for the night.

The family say Duncan may have been confused, not knowing where he was or believing he might be in prison. He died within a few days under social services care.

The authorities were unable to track down Duncan's next of kin who were thought to be away working with a travelling fair. He was cremated, with no family present at the funeral.

Memorial The new memorial to Duncan and Nesta in St Mary's Cemetery, Beverley

It wasn't until See Hear filmed at Beverley, and checked local records, that we learned the couple were in fact buried together at a plot Nesta had bought before they both passed away. The local funeral director thinks it was Nesta's niece who signed this off - Duncan's family hadn't known his remains had been restored to Nesta's side.

When we visited the grave, it was marked by a simple wooden cross with Duncan's name missing.

See Hear commissioned a local stonemason to create a new memorial stone for the couple which can now be seen by anyone at St Mary's Cemetery in Beverley, close to the Minster.

Looking back, what the couple endured is every deaf person's worst fear: to lose your child to the authorities, and to die alone possibly without knowing where you are.

Duncan and Nesta were baptised in Beverley, married in Beverley, and have found eternal rest together in Beverley.

But there is one mystery left to solve: what happened to Peter McKenzie, the son who was taken from the couple?

See Hear's programme about the deaf couple's wedding airs on 17 December on BBC Two at 10:30.

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'When dad hurts mum'

The father character leaving the house

Two picture books about domestic abuse have been published for adults with learning disabilities. But how do you communicate serious issues without words?

Picture books are usually created with children in mind and so tend to be brightly coloured with happy scenes. But a new book entitled When Dad Hurts Mum is different. It has drawings with muted colours and depicts adult situations - a mum with a bruise on her face for example, and a father getting arrested. The seriousness of the subject matter is reflected in the characters' facial expressions. Nobody is smiling, they are mostly sad and stern, drawn with furrowed brows and pursed lips. There are no words but it's clearly not for children.

Baroness Hollins, co-author and publisher of the books, says adults with learning disabilities need educational materials which are age-appropriate and books previously hadn't been there for those who can't read text at all. "Easy read" titles which sit alongside pictures with simple language, were unhelpful and children's picture books don't deal with "adult feelings".

So where and when did the idea begin? Baroness Hollins has a son with learning disabilities and, when he was nine, she created a comic strip about an upcoming family holiday to help him know what to expect. She saw how well it worked and applied it to adults she was working with at the time. That was 25 years ago and she has been publishing her work ever since.

The mother character with a woman who is on the phone to the police

Her first two picture-only publications, which are both about grief, are on their fourth print edition. There have now been 42 in the series, covering topics like going to prison, physical assault and getting married.

The crossbench peer, who is also emeritus professor of psychiatry of disability at St Georges, University of London, says: "If you can't read and words are presented to you, they remind you of all those horrible years trying to learn."

The two most recent books in the series, When Dad Hurts Mum, and Finding a Safe Place From Abuse, deal with domestic violence. The first is from the perspective of a young person, Katie, whose mum is being beaten by her dad. The second follows Katie as an adult, when she finds herself in a violent relationship. They were co-written by Baroness Scotland, who is the patron of the Corporate Alliance Against Domestic Violence and were funded by the Department of Health.

The father character being arrested

"Women with learning disabilities are far more likely to end up in relationships where they are abused and exploited," says advisor on the books, Dr Noelle Blackman, CEO of Respond, a charity which helps children and adults with learning disabilities who have been through abuse or trauma. She says she has struggled to find suitable ways of helping her learning disabled patients understand and deal with domestic abuse over the years.

"Many get lonely easily and are often pleased that they are in any sort of relationship," she says. "They are therefore slow to open up about what's happening to them."

Though a Women's Aid study from 2007 found that disabled women are twice as likely to experience domestic abuse as the rest of the population, there is no direct research about women with learning disabilities.

The female character sitting on the stairs

"Domestic violence is such a hidden crime," says Dr Blackman. "[People with learning disabilities] may not always recognise that relationships should not be as bad as the one they are in."

She says the books will help readers understand their situation and assist them to tell their own story. They are designed to be read in conjunction with a support worker or someone close and have all been developed with help from people with learning disabilities who have been through these difficulties.

The images have been designed specifically for people with learning disabilities and the process took months. The illustrator Anne-Marie Perks worked closely with experts to ensure that the pictures were clear and could be immediately understood.

Clubs run by volunteers for learning disabled people who want to get together to read and discuss the books, are growing in number with 13 running in Kent alone.

When one club read a picture book about prison it revealed that some members had experienced a stop-and-search by police, and others had relatives in prison.

After they finished reading the book, a local policeman met up with them and they were given the opportunity to visit a police station and learn more about the criminal justice system first hand.

When Dad Hurts Mum is out now and A Safe Place from Domestic Abuse will be published in January 2015.

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The one-armed man who somersaults on rooftops

James performing a parkour jump over a metal barrier

James Rudge was born with one arm and is earning a reputation online doing parkour around Bristol, the city he loves.

Rudge is not intimidated when it comes to skirting walls or somersaulting off them.

He works in customer services as a day job but spends his spare time in Stokes Croft, where the parkour artists of Bristol congregate to find new and exciting environments to jump around.

The 21-year-old became passionate about parkour, an urban sport that mixes acrobatics and athletics, and the similar discipline of free running, in 2005, aged just 12, after he watched a Channel 4 documentary about the activity, called Jump Britain.

Not intimidated by the apparent physicality of the discipline, Rudge quickly immersed himself in parkour, regularly travelling from Bath to Bristol to join the growing numbers of parkour enthusiasts, before moving there permanently.

The holistic training practice, as it is described by most who do it, requires excellent strength and balance, and practitioners have often been compared to cats or described as ninjas for their fluid and graceful movements.

At the heart of it is a desire to get from A to B in a quick and stylish way. Eugene Minogue, from Parkour UK, says that they are always looking for new routes to get them where they want to go more efficiently.

The one-armed man who somersaults on rooftops

For Rudge, who was born with his lower forearm missing, navigating environments is not new to him.

"I have always been climbing things," he says. "Even as a kid I'd be scaling trees and running around."

He says he has never had reason to consider how having one arm affects him physically, and even in parkour he only focuses on what he can do.

"It would be different if I had lost it because of some accident or trauma," he says, "but I have only ever known my body in this way so for me there isn't anything I can't do.

james wearing his prosthetic arm

"Climbing is probably harder than if I had both hands," he says, "but it just means I have to try and be stronger in my right arm."

He is currently trying to get strong enough to do handstands on one arm, and says it is tough as he still needs more strength to hold himself steady.

But his balance has always been as good as his peers because he has learnt to move, run and jump with one arm.

Minogue says that this kind of continuous practice and repetition of movements is an integral part of parkour and isn't any different if you have a disability.

"We have a thing called 'breaking jumps', which is when you have mastered a movement you have never done before," he says.

"At the heart of parkour is a mindset of getting to know and challenging the movement of your body, so it may be that Rudge has a stronger core or strength in another part of his body and this is actually something that others around him could learn from."

It is about overcoming fear and perception as much as it is about becoming adept at a particular skill, he says.

As with all who do parkour, Rudge has entered into this learning process to become better, but he doesn't have anybody in the same group who he can look to for advice in the best ways to move with one arm.

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What is parkour?

Three men practising parkour
  • Started in France in the 1990s and now practised all over the world
  • Pioneered by Frenchman David Belle, a former soldier and fireman, who was inspired by his father's teachings
  • Parkour is similar to free running but the two sports have different philosophies
  • Parkour is about getting from one place to another as quickly as possible - free running emphasises freedom of movement
  • Parkour is non-competitive and requires no equipment
  • A male practitioner is often called a "traceur" - a female a "traceuse"
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YouTube helped here, he explains. When he was first becoming interested in the practice, he searched the internet and came across another free runner, Max Runham, based in London.

Runham used a prosthetic arm in many of his videos, and Rudge tried the same for a while.

"I tried to use it to give me extra support in getting up high walls and especially for handstands to give me balance, but I found I was putting pressure more on my right arm and it was very cumbersome," he says.

He moves more freely without it on, and can use his stump much more productively to pull himself up onto ledges.

Parkour has been adapted for disabled people before, with experts citing its inclusivity as one of its most attractive features.

In Houston, Texas, parkour is used to teach people with a number of different disabilities ways to move their bodies, and James Gallion who has cerebral palsy does parkour to experience movement and a feeling of confidence he doesn't get in his day-to-day life.

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Ouch talk show 114: Christmas quiz

The guests in the studio

On this month's show - comedian Chris McCausland, filmmaker Dolly Sen and broadcaster Mik Scarlet join Kate and Rob in the studio for the seasonal disability Christmas quiz.

With Rob Crossan and Kate Monaghan.

How to listen

PDF download Read a transcript[171kb]

Click to listen

Show notes

More about this month's guests and discussions:

  • Chris McCausland is a blind comedian from Liverpool and star of a recent BBC drama written by Jimmy McGovern called Moving On. To parents and children he plays Rudi in the CBeebies show Me Too. He says he has worked hard to make a name for himself for being funny rather than being blind.
  • Filmmaker and artist Dolly Sen has created an online Madvent Calendar, her take on the traditional advent calendar from the point of view of somebody with a mental illness.
  • Also joining Rob and Kate in the studio is wheelchair-using journalist and former TV presenter Mik Scarlet. Find him on Twitter here.
  • Plus other disability-related festive treats.

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

Producer: Damon Rose.

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Remembering 'fiercely funny' disability activist Stella Young

Stella Young

Australian comedian Stella Young, who has died suddenly at 32, has campaigned for disability rights locally since her teens. But it was her 2014 Ted talk on "inspiration porn" that got the world thinking.

Disabled people with a high profile have often gained their fame through doing activities that the general public imagines they shouldn't be able to do, like being a Paralympic athlete or being into extreme activities like mountain climbing. These high-profile people can also earn money from motivational speaking designed to inspire a mainstream audience. But many disabled people feel that although they get the most airtime, the high-profile ones aren't representative of how they live.

Comedian, writer and activist Stella Young gained a profile but bridged the gap because she was respected by the general public and disabled people alike. Less than a metre tall, Young used a powered wheelchair because of her condition osteogenesis imperfecta, which causes bones to break easily.

A household name in her native Australia, Young campaigned hard for a disability benefits scheme which recognised disabled people have more expensive lives, like the UK's Disability Living Allowance (DLA). She edited the Australian Broadcasting Corporation's disability website, Ramp Up, until it closed in the summer. She was also a regular contributor to current affairs programmes, where she unapologetically pushed the disability rights agenda with tenacity and wit.

She started her campaigning work at 14 years old, auditing shops for accessibility in the small Victoria town where she lived. Some 18 years later, in April 2014, her Ted talk, "I'm not your inspiration, thank you very much" got more than a million views and started a conversation that rages on even now as the year draws to a close.

In it, Young systematically took apart familiar motivational material and delighted her non-disabled Sydney audience by introducing them to what she called "inspiration porn".

She talked about pictures of disabled people that she had seen being shared online with captions such as "your excuse is invalid" and "don't quit, try". She didn't have time for them and said they objectify disabled people for the benefit of non-disabled people. She said: "The purpose of these images is to inspire you, to motivate you, so that we can look at them and think, 'Well, however bad my life is, it could be worse. I could be that person.'"

Later in that Ted Talk, she turned her attention to the well-known cliche, "The only disability in life is a bad attitude". She said: "No amount of smiling at a flight of stairs has ever made it turn into a ramp. No amount of standing in the middle of a bookshelf and radiating a positive attitude is going to turn all those books into Braille."

In November she told Ouch: "I'm constantly being reminded that nobody really expects anything of me," and said that low expectations feed into poor education and low employment for disabled people. "You aren't going to look for what they can bring to the table because you underestimate what they can offer."

Although Young's humour could sometimes be considered biting, she respected the opposite view and thrived on healthy debate. "What I always seek to do with what I put out into the world," she told Ouch, "is to make people think about it a little bit more."

Tributes have poured in for Young from Australian politicians, members of the general public and international disabled commentators and activists.

Silent Witness actor and campaigner, Liz Car, called her "fiercely funny". Well-known US disability advocate Lawrence Carter-Long tweeted that Young was "strong and ballsy" and "lived a rich, messy life" - referring to how she often said she was a complex woman, not a one-dimensional caricature.

Proving this point, Young wrote about her love of knitting for Ouch in 2011, and this summer, she blogged for ABC Ramp Up about her weekly urge to dance. You can watch her Ted talk online here.

Stella Young: Knitting pretty

Dancing like everyone's watching, by Stella Young

Ted talks, Stella Young

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Disability day: What are you doing?

People in India took part in a rally to mark the 2013 International Day of persons with disabilities People in India took part in a rally to mark the day last year

People over the world are marking the International Day of Persons with Disabilities (IDPD) and have been getting in touch to tell us what they are doing.

All around the world, people are encouraged to get together to celebrate disability identity. It has been observed annually by the United Nations since 1992. It promotes disability rights and the benefits of integrating disabled people into all aspects of life.

Events in the UK tend to consist of performances by disabled artists and live discussion forums. This year, Liverpool's DaDaFest are running their inaugural international congress on how disability arts has affected social change. The Central Library Manchester will give disabled people hands-on access to the books and artefacts on display in a First World War exhibition. And in Cardiff, Disability Wales are running an event to help shape their new manifesto.

Iain and the team on the bus Iain and the team on the way to a game

So far, most disabled people who've contacted us weren't aware it was happening.

James West, who has MS, obviously doesn't think it's a very special day, lined up for him is: "dragging myself out of bed and going to work, as I do every day". Along similar lines: "I will be spending another day on public transport being kicked about & having to ask for a seat from oblivious folk", tweets Penny Rabiger.

@dorsetcharlie isn't impressed by the name of the day. She tweeted: 'International Day of Persons with Disabilities' Really, that's the best name they could come up with?! #PCMadness

But @catobellingsen got in touch to tell us he is attending a conference in Oslo on growing up with a disability in Norway, where the minister for social inclusion Solveig Horne is speaking.

And @iainmassingham tweeted to say he is spending the day "showing thanks that I am part of the amazing disability football club @AFCMasters #football4all".

@Matt_Davies1705 is spending the day talking to students with disabilities who are seeking paid internships, and @rebeccalawthon and @k_runswick_cole were both celebrating it with events in Manchester.

As the day rolls on, we'll be tracking what people are doing.

Matt Davies' picture of a bauble on a xmas tree saying "disability gives a whole new perspective on life" Matt Davies tweeted this picture from Bradford
Event in Manchester People were celebrating the day in Manchester

This year's theme as set by the UN is - Sustainable Development: The Promise of Technology.

Though the UN calls it IDPD, it seems to also go by other names and acronyms depending on language preference. The Department for Work and Pensions in the UK are referring to it as IDDP and many have inserted a W for 'with' as in IDPWD.

Sometimes, though, the IDPD bush telegraph goes quiet and it feels like the day goes by without much fuss or fanfare. So please tell us what you're doing on December 3 this year. Or better still, send pictures and reports from your event. We'll update this post with your contributions as the day progresses.

Email ouch@bbc.co.uk to let us know how you are marking the day, or tweet us @BBCOuch on Twitter or post on our Facebook page


In pictures: Stories of disabled life in India

Shangkarlal Bishnoi walking with his grandson

As part of International Day for Persons with Disabilities, photographer Graeme Robertson has been capturing the lives of disabled people in India.

Many disabled people in India are not aware of their rights and are often left feeling isolated and abandoned, says Arvind Ojha, the chief executive of the URMUL Trust, an NGO that works towards social inclusion.

Robertson has spent time in the Bikaner District of Rajasthan in North India, capturing images of what life is like for disabled people there. Many are excluded from daily activities, and are shunned because they can't earn money.

The URMUL Trust, and the international development NGO Sightsavers are working to establish disabled people's organisations (DPOs) which encourage people to advocate for their own rights, so they can then take advantage of services which can assist them to work or gain living skills.

The organisations have already encouraged some to set up shops and go out with friends but many more still feel isolated. The NGOs say their aim is to inspire more disabled people to gain independence and grow in confidence.

Shankarlal Sansi in his shop

Sankarlal Sansi went blind at 14 due to having cataracts in both eyes. He lives with his wife Gomati, two daughters and a son and runs a shop near his house. Since joining the DPO he has managed to secure a loan from a government scheme for disabled people to help him expand his business.

"I used to sit inside the house and my wife used to go to work and support me," he says. "People thought I was unproductive and pitied me. Now I earn myself, I'm very happy."

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Dallu on her bed
dad

Dallu Kumari contracted smallpox as a child and because her grandmother died there was nobody to look after her. Because of this she lost her sight.

She says that she struggles to think positively. "I can't do anything and I don't even want to do anything," she says. "If you put a chair there and ask me to sit in it then that's all I'll do."

She would like to be more independent and go out with her friends but she says she cannot do this without help, and struggles to find anybody to help her.

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Bhagarath working in the flour mill

Bhagirath Jaat runs a provision shop and a flour and oil mill to earn a living, as well as working at the local electricity department. In 2000, at the age of 26, his left leg became trapped in a machine at a steel mill and he had to have it amputated below the knee.

He says that initially his dreams were shattered when he lost his leg. "I felt that life would be useless without a leg," he says. "At first I walked with crutches, but then I got an artificial leg. Now my problems aren't as bad as I thought they would be."

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Shyam headshot. You can clearly see his right eye is damaged by cataracts.

Shyam has been visually impaired for the past 15 years. He has three brothers, two of whom are also blind. Shyam relies on his elder brother Soorajmal, 43, who is married with six daughters and a son, to support him.

Shyam stays in his room everyday doing his 'puja' (offerings to god). He dreams of starting a business, getting a small house and having a wife and family, but can't see how this could ever become a reality for him and at present he feels very isolated.

"In society if you have no money and work you are considered a burden and people won't talk to you," he says. "I simply sit at home; there is nothing to be happy about."

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Manju cooking, her crutches are propped up against the wall

Manju Devi Maghwal is 45. She had an allergic reaction as a child and now has to use crutches.

Before she joined the Bikaner DPO she wasn't aware of facilities or schemes available for disabled people, but now she has a travel pass and can get around more easily.

"Now I can travel subsidised or free so I don't need to think, 'should I travel or not?'" she says.

She says she couldn't imagine doing productive work before going to the DPO but after meeting others who are working her confidence has grown and she has now set up a self-help group in the community.

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Shangkarlal Bishnoi headshot

Shangkarlal Bishnoi is 60 and went blind in 1984 when someone threw acid in his face. He lives with his wife, son, daughter-in-law and two grandchildren.

He says he feels he has lived two lives: the first 30 years when he could see, and the last 30 years as a blind man.

He says that disabled people used to feel ashamed to come out of the house and speak to the community, but having a central place to go to has built their confidence.

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Bhanvari Devi weaving

Bhanvari Devi is 35. During her second pregnancy she had health complications that led to the loss of her sight.

Since joining a DPO she has been given a disability certificate and can now access the services and schemes available to people with disabilities in India. As well as this she has been given training in living independently and her confidence is growing.

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We’re adults, not children, says learning disabled girl band

Sisters of Invention

An image-conscious Australian girl group with learning difficulties wants the world to know that they are adults, not children.

"This isn't Disneyland, I'm not a novelty, this is as real as it gets," sing The Sisters of Invention in unison on their energetic debut song.

The young women - Annika, Michelle, Jackie, Aimee and Caroline - are a pop group with a difference. All have learning difficulties and some have additional impairments.

The five are based in Adelaide, Australia, and met in 2010 when they sang together in a choir run by Tutti, an organisation which supports disabled artists. Tutti saw they had talent and invited them to form a group. Now they perform together two or three times per month, mostly at conferences, and this is how they make a living.

Michelle is 25 and has cerebral palsy and a mild learning disability. She says they chose the name The Sisters of Invention "because we are like sisters and we support each other on and off stage. For the invention part, we are trying to change people's view of people with disabilities. We are reinventing the rules".

Start Quote

If you want to be inspired by artistic achievement then fine, but don't be inspired because someone can't walk as well as you and can remember their own name”

End Quote Michael Ross, manager

"I left school years ago, I thought you should know," is another line from that current song, penned as an angry response to a support worker who told them they should only perform for school children.

The accompanying video reinforces their message. It starts with the five dressed as Disney princesses holding toys. By the end, Tinkerbell's wings are broken, Rapunzel's hair has been chopped off and all the toys have been trashed and thrown aside. "It's about not treating us like disabled kids," says Aimee, 28, who has Williams syndrome, a genetic condition which comes with an often documented affinity with music. "We are people," she says, "not just disabled people."

"We knew that we were capable of a lot more than the support worker thought," adds Annika, who is 28, blind and pitch perfect.

All 10 songs on the album are based on the members' own experiences and were written as a group in their twice weekly meetings at Tutti. "We would arrive in the morning and I'd say, 'What do you want to talk about today?'" says their manager and producer Michael Ross. He then noted down everything they said until lyrics took shape. "Much poetry would come from them," says Ross, who made sure they all understood exactly how their words would later be used.

One track, Chaos And Serenity, looks back at Annika's time at school where she received mixed messages about her abilities. Her parents knew she could succeed, she says, but the school didn't agree. "The principal kept telling my parents I couldn't learn but I proved her wrong," says Annika.

Another track, Tsunami Of Kites, came from feelings expressed by 25-year-old group member Jackie, who was close to a young cousin who took her own life.

Performing on stage

Building a piece of work through conversation is the norm in learning disability arts circles. It's considered a good way of drawing out what participants really want to say. Producer Ross says that putting "their truth" out there is important. "I'm not interested in [their disabilities] at all," he says. "What I'm interested in is that we get to see the world through a lens that people in pop culture almost never get to see. It is creative gold."

When the Sisters perform their songs and routines, the physical side of their disabilities are more apparent. Those who struggle to dance or move on stage sit on stools, Ross says, "because they're not up there to showcase their barriers or difficulties - they're up there to showcase their strengths".

Although creative decisions are made together, what they wear is strictly an individual thing.

"I like wearing trackies," says Jackie, who describes herself as the hip-hop one. "I like glitter and sexy stuff," says Aimee, who dresses more like a cabaret artiste. Michelle calls herself "smart and trendy" and has shoelaces matching her bright pink top.

One of the sisters getting out of a car The Sisters insist on dressing individually

Annika, who can't see, says she gets help from her mum when choosing clothes. Caroline, 29, a trained dancer, picks up clothes on her trips around the world with her parents.

The girls have been honing their sound and image for three or four years and it's this year that it's really starting to fall into place with a download now available and lots of events in their diary.

Most gigs The Sisters of Invention do are for corporate events where the audience "want someone to inspire them", says manager Michael Ross. But he's keen to stress that the group consider themselves as artists above all.

"We don't jump up and down at being the point of inspiration," he says. "If you want to be inspired by fantastic, artistic achievement then fine, but don't be inspired because someone can't walk as well as you and can remember their own name."

This Isn't Disneyland, the band's debut single, is available for download now. The accompanying video can be seen online and their self-titled album, The Sisters of Invention, is due for release early next year.

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Making the most of life with cystic fibrosis

Tim in his garden

Tim Wotton was told he wouldn't live past 17 because of cystic fibrosis, but having reached 43 he lives every day like it could be his last.

Every hour of every day is important for me as I never know when I will run out of time. Having the life-limiting condition cystic fibrosis (CF) drives my thirst for life.

I dress each day like it's my last day on Earth, and never leave my favourite clothes in the wardrobe waiting for that special moment. I don't see the need to gripe about the small things I hear around the office, instead I take time each day to appreciate something natural like a sunset or landscape. Every day should be punctuated by special moments.

For most of my adult life I was never happier than when my weekends were crammed full - I call them Windows 7 weekends.

I gave them that name because there are seven "windows" of social opportunity after work ends for the week: Friday evening, Saturday morning, afternoon and evening, and Sunday morning, afternoon and evening.

If I were able to fill all seven slots with an activity of some kind - sport, lunch, dinner, shopping, cinema, family, partying - then, in my mind, I was savouring every moment.

Tim with his wife and son Tim's priorities lie with his wife and son

This full-on lifestyle spanned my late teens, university, all my twenties and early thirties, and was driven by the likelihood that I would die young.

Nowadays I have different priorities, but I still take full advantage of those windows in each day to fit in quality time with family, socialising, my business consultant job, and not forgetting my vital exercise in the form of hockey on Saturdays and evening gym sessions.

Cystic fibrosis is one of the UK's most common life-threatening inherited diseases, affecting over 10,000 people. It affects the internal organs, especially the lungs and digestive system, by clogging them with thick sticky mucus, making it hard to breathe and digest food. Each week, five babies are born with the condition, but also each week three young lives are also lost to it. There is currently no cure.

Start Quote

As much as I despise my daily health battle, it has given me a perspective on life that many people may never attain.”

End Quote

My wife, Katie, and seven-year-old son, Felix, provide the necessary motivation to keep on top of my survival battle and offer me a ready supply of life-affirming memories.

Katie, a senior nurse, understood my medical needs from day one, and was hardly ever phased by the sights and sounds of CF. I frequently cough so hard and for so long that I go into spasm and end up being sick on myself - often as I'm getting ready to go to work. A single coughing fit can last longer than an hour, and is exhausting. My wife pitches in to assist me, and has taken my life-expectancy worries in her stride. She appreciates my zest for life but reminds me to pace myself at times.

Felix has grown up surrounded by medical paraphernalia and has become accustomed to seeing me use my bizarre-looking nebulizer and taking my 40 tablets per day, which he calls "Daddy's sweets!"

I'm around for them as much as possible, and give Felix quality time, coaching him to play hockey, taking my turn to get up early with him at the weekend, going on family days out and taking Katie out for dinner. I achieve these things against a daily backdrop of two to three hours of treatment to maintain my CF, as well as regular visits to the GP, chemist and hospital. I'm only as healthy as my last treatment, so I have to think of it all as enabling rather than diminishing my life.

Tim playing hockey Tim regularly plays hockey which is remarkable for somebody with cystic fibrosis

One cruel twist is that CF can be a lonely and solitary condition as us CFers are advised not to meet face-to-face for fear of making ourselves more ill from cross-infection (different people can carry different bacteria). It means we cannot socialise easily or give each other regular support.

This segregation of patients was enforced in CF clinics over four years ago, so I am no longer able to engage in waiting room small-talk with others who have the same condition as me. I've not been able to see my older CF mentor Chris in all that time, and can only connect via email now.

Although we can use social media, it's a shame that CF folk can't openly meet up and chew the fat. By not being able to see each other's body language, we miss out on the most powerful form of communication.

As much as I despise my daily health battle, it has given me a perspective on life that many people may never attain or will only encounter later in life. People with a life-threatening condition have a pronounced ability to not only identify, but fully appreciate magic moments, as they contrast so strikingly with the usual daily hardship. I find it liberating to look at each day as potentially my last day on Earth.

Tim Wotton appeared on the latest podcast from BBC Ouch and has written a book How Have I Cheated Death?

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Performing poetry, on a ventilator

Owen with his wife Jayne

Performing poetry has its challenges, but more so if your breathing is controlled by a machine.

Owen Lowery is 46 and lives in Lancashire. He has a ventilator which helps him to breathe.

He began writing poems seven years ago on a university course and started to perform them for audiences in 2012 after an Arts Council grant made live shows possible. He brought in a musician, a producer and a film-maker to create a poetry performance which is accompanied by music and animation.

His ventilator is programmed to take breaths for him at set intervals which, he says, can make it tricky to read his work aloud. "I was a bit nervy at first," Lowery says, "because I thought that the gaps between breaths would be too obvious and too long."

He says that being on a ventilator is like breathing passively. "It's done for you, without you having to think about it. You have to wait for it," he says, "and that has a big impact on your reading and your performance of poems.

"When I perform, I try and be aware of it and almost use it as an advantage to make people think about what I am saying. But in general, when you've been on it quite a long time, you almost forget it's there."

Listen to Owen Lowery performing a poem from Otherwise Unchanged

Lowery spends time practising before a performance to work out where his breathing will kick in, so he doesn't get caught out in the middle of a line. "You want the pauses to occur at fairly natural places," he says. "It's about pacing yourself out. Like doing a musical score and figuring out where to put the breaks."

He hasn't always been disabled, and writing wasn't always his passion. At 18 years old he was holder of the British Judo men's closed title when a promising sporting career ended abruptly for him. An accident in the ring during a charity tournament left him paralysed from the shoulders down. He's now a tetraplegic and unable to breathe for long periods without help.

After two years Lowery left hospital with his new wheelchair and a portable ventilator. He describes the important device as: "a vanity case-sized thing with batteries, about the size of a Filofax". A tube leads from the ventilator to a tracheostomy - an opening in the neck in front of the windpipe. "The tube goes under my jumper and I always wear a neck scarf, so you can't even see the tracheostomy bit," he says.

Following the accident, Lowery's parents moved from Reading to Lancashire to help him. He went on to gain a first-class honours degree in humanities from the Open University followed by two master's degrees, one in military studies and another in creative writing. He is currently working towards gaining a PhD on World War Two poet Keith Douglas.

Wedding day Owen married Jayne last year

He met his wife, Jayne, when she began working as his carer. They got married last year but Lowery is still living with his parents until Jayne's house can be adapted.

Jayne reads some of the poems in the live shows, and often takes notes for Lowery if something inspires him when they are out together.

In his first book Otherwise Unchanged, nestled among works about historical events and his beloved Liverpool football club, there are many poems about his recovery.

One of them, Bruise from my Baclofen Pump Re-fill, deals with the complicated relationship between patient and doctor while having anti-spasmodic drugs administered to a pump underneath his skin. And another poem in the collection, New Admission, Southport ICU, recounts the arrival of a short-stay patient to the high dependency ward.

A new book, which doesn't touch on disability, is based on the work of Portuguese visual artist Dame Paula Rego, and will be published early next year.

"Writing about disability in many ways is no different to writing about anything else," says Lowery. "It is simply something that is there, in the way that an odd-shaped tree might be, or a football match, or a story from the war. The secret, if there is one, is to understate, rather than overstate, perhaps, allowing the reader to make their own mind up."

Owen Lowery will perform poems from Otherwise Unchanged on 4 December at Liverpool's The Bluecoat, as part of DaDaFest.

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The real Tom Thumb: History's smallest superstar

Charles Stratton standing on the hand of a Guardsman

Charles Stratton, better known by his stage name Tom Thumb, was a dwarf who became a global celebrity in the 19th Century.

When people think of Tom Thumb they may recall the English folklore character, or the children's nursery rhyme, but few, it seems, think of the real life Tom Thumb, a performer who shot to fame in the 1840s, watched by 50 million people worldwide, and a firm favourite with both Queen Victoria and Abraham Lincoln.

In the winter of 1842, legendary showman PT Barnum was stranded in Stratton's hometown of Bridgeport, Connecticut. His New York based "freak shows" were becoming very popular and it seems he was keen to meet a four-year-old "extraordinary local boy" he had heard the townsfolk talk about, said to be just 25 inches tall.

"The public at the time craved freaks of nature," says Lord Grade who presents a new documentary on the life of Tom Thumb. From people covered in hair and dubbed cannibals, to giants and dwarves, Barnum offered people the chance to see them in his Hall of Living Curiosities.

No questions were asked about the appropriateness of this type of show at the time. "You have to remember that 'freaks' were big business then, and there were quick bucks to be made," Grade says. Speaking from his experience of TV production he says that decisions have to be made now about whether a person is fully consenting.

Find out more

Lord Grade with a cardboard cutout of General Tom Thumb
  • The Real Tom Thumb: History's Smallest Superstar will broadcast on BBC Four at 21:00 GMT
  • Lord Grade is the former BBC chairman and former executive chairman of ITV plc

At the time though, it was an attractive gig for many, who with their "weirdly shaped" bodies were often ostracised and impoverished due to a lack of work. Stratton's parents saw this as an opportunity and consented as soon as Barnum offered a hefty $3 per week (about £70 a week) to their son. The four-year-old was put on a month's trial at Barnum's notorious American Museum in New York and had pride of place in the line-up.

Barnum had big plans for Stratton. He kitted him out in custom made suits and boots, came up with witty skits, said he was from England and told audiences the boy was a much older 11 to avoid accusations he was merely exhibiting a slightly smaller than average child. Most importantly though, Barnum changed the boy's name to General Tom Thumb, after the English folklore character. It was brilliant branding and the press took the bait, says Professor Eric D. Lehman, author of Becoming Tom Thumb. "The title General is a classic celebrity status enhancement such as Prince, Madonna, Count Basey."

The media, like Barnum, were not concerned with issues of exploitation. "General Tom Thumb Jr., the dwarf, is the most wonderful specimen of a man who ever astonished the world," one newspaper wrote. "The idea of a young gentleman, 11-years-old weighing less than an infant of six months is truly wonderful."

Next on Barnum's list was to ensure Stratton became an international star, and London was the place to go. It was a brave move as the two countries had been at war just 30 years earlier, and many in England's capital prided themselves on being more respectful and dignified than the Americans. There was a worry that Londoners would find a performing dwarf simply crass.

Tom Thumb with two women General Tom Thumb quickly became a worldwide success and was popular with women

The initial reception was poor, but ever the publicist Barnum managed to turn their fortunes around and quickly learnt the importance of class status in England and the marketing of Stratton to the upper echelons. Aristocratic endorsement quickly advanced his popularity. Knight led to lord and lord led to duke until they got a personal invitation from Queen Victoria to Buckingham Palace.

"Good evening ladies and gentlemen," was a six-year-old Stratton's introduction to the royal court. It wasn't exactly the protocol Queen Victoria was used to. With his entertainer's hat on Tom Thumb launched into a routine singing cheeky songs and rattling off impressions. The court were officially in mourning for Prince Albert's father so it was a risky tactic.

Start Quote

It is true we are little but we are as God made us, perfect in our littleness.”

End Quote Charles Stratton

But nobody kicked them out. And, when it came to leaving, Barnum was well briefed in the etiquette of not turning your back on the monarchy and knew to walk backwards. Stratton tried to keep in step but his little legs wouldn't let him so he would turn and run and stop and turn around to bow again and again. It set off a royal spaniel, the same height as the boy, who barked incessantly. Stratton, ever the performer got out his tiny ceremonial sword and pretended to fight the dog. The court erupted, Queen Victoria was amused and they were invited back to the Palace.

Stratton's fame was secured and for the next three years he toured Europe with Barnum. Wherever he went he was mobbed by hysterical crowds. Women queued around the street to get a kiss from him and there are reports of husbands "driven wild with jealousy", Lord Grade says.

The next logical step for Barnum was a celebrity wedding. In February 1863, he arranged for Charles to marry one of his other turns, Lavinia Warren, also a person of restricted growth. Their wedding was eagerly anticipated and it featured on the front page of the New York Times on the days leading up to the event - even though it was at the height of the civil war. Harpers magazine snapped up the wedding photographs for its cover which were taken in advance, and President Abraham Lincoln hosted their honeymoon party.

Charles Stratton with Lavinia and their baby Stratton married Lavinia Warren and they both insisted their marriage was real

But, as with celebrity weddings of today, some believed it was a cynical publicity stunt. Stratton was quick to react to this. He said: "It is true we are little but we are as God made us, perfect in our littleness," he wrote. "We are simply man and woman of like passions and infirmities with you and other mortals. The arrangements for our marriage are controlled by no showman'."

The wedding boom indeed made the enterprise more successful. The next plan to increase their fame further would be the addition of a child, and Barnum was, as ever, happy to fix this. He rented babies from foundling hospitals for photo shoots and personal appearances, and the crowds went crazy. When that idea had run its course, Barnum simply said the child had died.

Here, Lord Grade says that Barnum had overstepped the mark and moved from entertainer to exploiter.

Lavinia confessed to the baby hoax in her autobiography and her version of events has gone unquestioned for years. However, in an unusual twist, historian John Gannon has discovered that this may not have been the case and revealed paper evidence in the documentary that seems to prove the child was in fact Charles and Lavinia's after all.

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Other PT Barnum acts

PT Barnum
  • Fiji mermaid: The body of an orangutan and the base of a fish that people believed was a genuine specimen
  • Chang and Eng Bunker: Thai-American conjoined twin brothers whose condition and birthplace became the basis for the term "Siamese twins"
  • Josephine Clofullia: A Swiss-born bearded lady
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Stratton could easily have retired as a young child, he had earned a large amount of money that paid for his sisters to go through private education, but he went on touring for many years. He clearly enjoyed the stage, and though others questioned whether Barnum was exploiting him, Stratton proved himself to be entirely in control of his own show later in his career.

Mat Fraser, a modern day actor who is thalidomide-impaired, and who performs a freak show skit, thinks there are clear reasons why Stratton was continually drawn to the stage.

"Here's the thing that non-disabled people tend to forget: you do your show and a thousand people think you're fantastic, you walk out the stage door and some fella's staring at you on the street again," he says. "BANG! You're back there, you're always back there. Of course you want to be back on the stage, it's a delicious power that I wouldn't know what to do without."

Eventually the Strattons settled down in Warren's home town of Massachusetts where they built a mansion complete with custom made small furniture. He died suddenly at the age of 45 and more than 10,000 people travelled to see his body lying in state. Eight years later Barnum was buried just a few feet away.

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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 Organization 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 telltale 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. Listen again on the BBC iPlayer.

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