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The Punk Syndrome- Watch On Demand

April 17, 2013

Would you like to watch the film The Punk Syndrome? Well. now you can, if you live i the UK or Ireland. The Guardian have the whole thing here, as part of their New View documentary season.

See University Through The Eyes Of A Wheelchair User

April 17, 2013

One of the funniest articles I’ve ever read, from today’s Guardian.

Imagine the scene. You’re walking around campus, surrounded by all these “normal” people in wheelchairs and everyone’s staring at you. It happens so often that you’ve stopped noticing it. You are a walker after all, part of that strange group of people, those oddities who don’t use wheelchairs like everyone else.

You’re one of those people who causes inconvenience to bus drivers as they have to move their ramps out of the way for you. You don’t need them. You’re always in the way of everyone’s wheelchairs, causing a nuisance.

You have to use those weird things called stairs too. You enter the students‘ union through a shady-looking back entrance, having to take the long way round while everyone else gets in straightaway. By the time you get there everyone’s already sat talking, sitting down in their wheelchairs while you’re awkwardly standing up, wondering how to start a conversation.

That’s if you’re lucky. You might not be able to get into the building in the first place. I suppose there’s always the Disability Discrimination Act, which means that every public place must be accessible to walkers, but excuses are plentiful. “We’ve made reasonable adjustments”, “it’s only for wheelchair users”, “it’s too expensive”, “you don’t really need to go there anyway”. There’s always a get-out clause.

Some people are great, really helpful and have an instinctive understanding. Even if they don’t understand immediately, they listen and are prepared to compromise.

But others? They haven’t got a clue, happily sat in their wheelchairs with no idea of what it’s like for walkers. Some people say walkers shouldn’t go to university. They should be put in special schools and homes, away from public view because they’re just weird, aren’t they? They make people feel uncomfortable.

And there’s another thing, they just stand there all the time, scrounging money from genuine, hard-working non-walkers who pay taxes. Why should we pay for them? Most of them are probably faking it anyway. I’ve seen those programmes, where they claim all that money for uni, pretending they’re walkers just so they can get a free laptop, when they’re actually playing wheelchair basketball every week on the quiet. That comedy programme too, with the guy who pretends he’s a walker and then does some wheelchair racing when nobody’s looking!

What about the genuine walkers? Bless them, they do their best, the poor little souls. It’s not their fault. We should just be glad we’re not like that…

…Back to the real world. As a wheelchair user, I’ve encountered a range of attitudes towards my disability. But from my experience, students are the most open-minded people around. They can play a key role in ensuring greater tolerance and understanding of disability in the future.

Sue Marsh On Margaret Thatcher’s Funeral

April 17, 2013

Today, on the day of Margaret Thatcher’s funeral, many are feeling the natural sadness that a person has passed away.

However, should her funeral be a big occasion, paid for by the state? Sue Marsh spoke well for many yesterday when she wrote this.

Did King George III Have Bipolar Disorder?

April 16, 2013

Modern medicine may help us to discover the real reasons behind King George III’s erratic behaviour, writes historian Lucy Worsley.

 

George III is well known in children’s history books for being the “mad king who lost America”.

 

In recent years, though, it has become fashionable among historians to put his “madness” down to the physical, genetic blood disorder called porphyria. Its symptoms include aches and pains, as well as blue urine.

 

The theory formed the basis of a long-running play by Alan Bennett, The Madness of George III, which was later adapted for film starring Nigel Hawthorne in the title role.

 

However, a new research project based at St George’s, University of London, has concluded that George III did actually suffer from mental illness after all.

 

 

Using the evidence of thousands of George III’s own handwritten letters, Dr Peter Garrard and Dr Vassiliki Rentoumi have been analysing his use of language. They have discovered that during his episodes of illness, his sentences were much longer than when he was well.

 

A sentence containing 400 words and eight verbs was not unusual. George III, when ill, often repeated himself, and at the same time his vocabulary became much more complex, creative and colourful.

 

These are features that can be seen today in the writing and speech of patients experiencing the manic phase of psychiatric illnesses such as bipolar disorder.

 

Mania, or harmful euphoria, is at one end of a spectrum of mood disorders, with sadness, or depression, at the other. George’s being in a manic state would also match contemporary descriptions of his illness by witnesses.

 

They spoke of his “incessant loquacity” and his habit of talking until the foam ran out of his mouth. Sometimes he suffered from convulsions, and his pages had to sit on him to keep him safe on the floor.

 

The researchers have even thrown doubt on one of the key planks in the case for porphyria, the blue urine. George III’s medical records show that the king was given medicine based on gentian. This plant, with its deep blue flowers, is still used today as a mild tonic, but may turn the urine blue.

 

So maybe it wasn’t the king’s “madness” that caused his most famous symptom. It could have simply been his medicine.

 

I interviewed the researchers at St George’s for a new documentary series, Fit To Rule: How Royal Illness Changed History.

 

In this series, I re-examine our kings and queens as individual members of the human race, rather than just as impregnable icons of splendour and power. They suffered many of exactly the same biological and psychological weaknesses as the rest of us – only with rather more serious consequences.

 

George III’s recurring bouts of illness caused him to withdraw from daily business to recuperate out of the public eye at secluded Kew Palace, near Richmond.

 

 

His son, the Prince of Wales, with whom George III had a terrible relationship, wanted to be appointed regent, and to act as the king in everything but name. But the future George IV was very much associated with the political opposition, and the government was determined to keep him out.

 

Strikingly, although the crisis caused a good deal of arguing, it was in fact resolved quite easily. This was partly because the king just got better (despite the bizarre and sometimes inhumane treatments given to him by the royal doctors) and partly because he was, by this stage in British history, a constitutional king.

 

When the Hanoverians had been invited over from Germany in 1714 to take the throne after the failure of the Stuart line, they came at the invitation of Parliament. Parliament therefore held the whip hand over them, and the powers of the monarchy declined.

 

But despite his illness, George III was a dedicated and diligent king, and won the respect of his politicians. In fact, when his illness drove him off the political scene, they realised how much they needed his calming effect on their squabbles.

 

It is counter-intuitive to suggest it, but royal health issues can actually strengthen the monarchy, not least by creating sympathy and affection for an afflicted individual.

 

 

Garrard also points out how the explanations or diagnoses that we come up with for patients in the past reflect our own current attitudes to sickness and health. One of the reasons that the porphyria argument caught on is because it seemed to remove the supposed stigma of mental health issues from the Royal Family.

 

And yet, as Garrard notes, porphyria opened up a different set of problems, because as an hereditable illness, George IV, and indeed other members of the Royal Family, became candidates for diagnosis too.

 

The research project still continues, but Garrard is already confident of one thing. “The porphyria theory is completely dead in the water. This was a psychiatric illness.”

 

But it certainly did not stop George III from being a successful king. In a prosperous, industrialising Britain, it was growing more important for a monarch to reign rather than rule, providing background stability rather than aggressive leadership.

 

With his 60-year reign, George III certainly provided continuity, and I believe that his short episodes of illness tend unfairly to diminish our views of him.

 

Fit To Rule is broadcast on BBC Two on 15 April at 21:00 BST, or catch up with iPlayer

(Disability Related) Tweets From Or About #BostonMarathon Incident

April 15, 2013

My thoughts are with everyone at the scene of the Boston Marathon, and everyone who knows anyone at the scene who may read this.

I’ll add to this if I see anything relevant.

URGENT Government Planning To Abolish Section 3 Of Equality Act TOMORROW!

April 15, 2013

This is all over Facebook:


URGENT ATTENTION FROM PCS UNION. SHARE ON YOUR WALLS & WITH ALL GROUPS.

On Tuesday 16th April the Government are planning to abolish section 3 of the Equality Act 2006. This will effect everyone.

Here’s what you can do now….Click link below for explanation. Enclosed are 2 other links, the 1st details a case won against ATOS, the 2nd link is to the PCS website with a automatic email you can send to your MP now.

http://diaryofansahstrokesurvivor.wordpress.com/2013/04/12/an-important-call-out-to-take-action-now/

A New Sexual Advocacy Group For People With Disabilities

April 15, 2013

This article from today’s Guardian has the details of a new scheme being piloted to help people with disabilities enjoy sexual relationships.

People With Parkinsons Face Regular Discrimination, Finds Study

April 15, 2013

I think these results can pretty much be applied to people with all disabilities! The drunkenness comment could definitely apply to many people with CP who can walk.

Nearly half of those with Parkinson’s face regular discrimination, such as having their symptoms mistaken for drunkenness, a survey suggests.

The survey of more than 2,000 people was commissioned by charity Parkinson’s UK.

 

One person in 500 people is affected by the condition in Britain.

 

Parkinson’s sufferer Mark Worsfold was arrested during last year’s Olympics because police thought he looked suspicious.

 

He was detained during the cycling road race in Leatherhead, Surrey, reportedly because he was not smiling – the condition means his face can appear expressionless.

 

Parkinson’s is a progressive neurological condition that attacks the part of the brain that controls movement.

 

The main symptoms of Parkinson’s are tremors or shaking that cannot be controlled, and rigidity of the muscles, which can make movement difficult and painful.

Public attitude

Speech, language and facial expressions can also be affected.

 

Most people who get it are aged 50 or over but younger people can have it too.

 

The survey found that one in five people living with Parkinson’s had been mistaken for being drunk, while one in 10 had been verbally abused or experienced hostility in public because of their condition.

 

Around 62% said they thought the public had a poor understanding of how the condition affects people.

 

More than 37% of those surveyed said they felt isolated when in public and 60% said they felt uncomfortable or nervous.

 

 

But the research also revealed that discrimination did not just come from strangers.

 

Ten per cent said they had been treated badly while at work, and 30% said that friends treated them differently because they did not understand the condition.

 

The charity said the survey results painted a deeply disturbing picture about public attitudes towards those living with the degenerative disease.

‘Hurtful comments’

Steve Ford, chief executive at Parkinson’s UK, said: “Life with Parkinson’s can be challenging enough, but when that is coupled with feeling scared to even go out in public for fear of freezing in a busy queue and being tutted or stared at, life can feel incredibly cruel.

 

“Time and again people with Parkinson’s have to fight against the old stereotype that the condition is just a tremor.

 

“This basic misunderstanding has sentenced people with Parkinson’s to a life of hurtful comments, being refused service in shops and even being shouted at in the street, all because people have mistaken their speech or movement problems – a common symptom of the condition – for drunkenness.”

 

The charity is urging people to put themselves in the shoes of the 127,000 people in the UK living with the condition and learn more about Parkinson’s.

Jack Carroll- Britain’s Got Talent 2013

April 14, 2013

Readers, I’ve always known men with CP are a funny bunch. I mean, to name just a few, there’s Josh Blue, Lee Ridley, and of course the brilliant Laurence Clark. In fact, throw in Francesca Martinez and Maysoon Zayid, and you’ll see that women with CP are hardly boring, either.

So, readers, Jack Carroll is in very good company.

In case you missed Britain’s Got Talent last night, Jack Carroll is 14, hilarious and well and truly DisAbled. Here’s his audition. You won’t be able to wipe the smile off your face!

I’ll be following his progress through the competition with interest.

Exemption From Bedroom Tax For Mother Who Feared Putting Disabled Son Into Care

April 14, 2013

A small victory. Could it be the first of many? I for one hope so.

A single mum who faced putting her disabled boy into care because of the bedroom tax has won a U-turn which could pave the way for thousands of other desperate victims.

The harrowing plight of severely autistic 11-year-old Logan Oxley-Goody was exposed by the Sunday People last month when mum Fiona revealed she could not afford the extra £60-a-month to keep a vital spare bedroom needed for her son’s round-the-clock care.

But the council backed down in a major victory for our campaign – telling her she is now EXEMPT.

And today the Sunday People calls on David Cameron to offer the same help to other parents with disabled youngsters.

Delighted Fiona, from Rettendon, Essex, praised us for backing her battle.

She told us: “It’s great news. I’m very pleased. Hopefully, this is going to set a precedent and help families who are in a similar situation to me.

“It’s one battle down and the Sunday People campaign definitely helped.”

For months, our campaign has featured case studies hit by the hated tax which came in on April 1st, including disabled people, those with long term illnesses and foster families.

Fiona and Logan’s case came to light after David Cameron told the House of Commons: “Anyone with severely disabled children is exempt from the spare room subsidy.”

But we revealed the truth – that families like Fiona and Logan ARE being hit by the tax.

And on Thursday she received a letter from her local authority telling her she was exempt. The council told her it was because Logan is so severely disabled.

Fiona added: “All through Logan’s life I’ve had to fight for things and stand my ground.

“I hope the coverage of our story gives other people the confidence to come forward.”

Fiona faced the tax for a tiny third bedroom which allows a carer to stay three nights a week. Logan needs 24-hour care as he self-harms.

The house – which the family moved to in 2006 – has been specially adapted with a padded room for Logan.

There are even CCTV cameras to keep an eye on him. Using savings and grants, Fiona spent around £15,000 on their semi-detached home.

But she would have faced demands to pay back grants, because she had been there less than 10 years.

The National Housing Federation praised the Sunday People for fighting Fiona’s corner.

National Housing Federation chief David Orr said: “We’re delighted Fiona’s council has taken a common-sense approach.

“Her case shows a one-size-fits-all policy does not work, that it is unfair, and that it will hurt families who really need another room. We urge the Government to see sense and scrap this policy now.”

Pensions minister Iain Duncan Smith has only freed up a further £25million to help 420,000 households with a disabled person.

Ninety per cent of voters in a Sunday People poll said homes needing a spare room for disabled family members should be exempt. Two-thirds of social housing tenants hit by the tax are disabled.

The best they can hope for is help from a hardship fund worth only £2.51 a week if shared by 230,000 disabled people who need it.

Disabled Protestors In IDS’ Garden

April 13, 2013

Ha ha. Why no coverage from mainstream media?

 

Disabled activists are occupying the front garden of IDS millionaire’s mansion in Buckinghamshire.

An eviction notice has been pinned to his door.

Speakers are listing the Tory assaults on disabled people and the poor.

Pictures to follow shortly

Link to live coverage on UKUNCUT on twitter

http://bambuser.com/v/3510254

Munchkin Actors Express Fury At Margaret Thatcher ‘Ding Dong The Witch Is Dead’ Song

April 13, 2013

I’m no Conservative, but my opinion on this is that the campaign to have the song in the charts, like any celebration of anyone’s death, is terrible and completely inappropriate.

MUNCHKINS from The Wizard Of Oz last night slammed protesters using film song Ding Dong! The Witch Is Dead to mock the death of Baroness Thatcher.

 

 

 

Ruth Duccini, 94, and Jerry Maren, 91 — who sang the ditty — said: “It’s terrible.”

 

Saddened Munchkins said it was monstrous to hijack the song — as the BBC fudged a decision whether to play it.

 

Ruth, among those who sang the song in 1939’s Wizard Of Oz, believes the campaign to get it to No1 insults Baroness Thatcher — and threatens the legacy of the much-loved Judy Garland movie.

 

Speaking from her US home, she said: “Nobody deserves to be treated in such a way. When we were filming the movie no one intended it to be used in this way. I am ashamed, I really am.”

 

And fellow Munchkin Jerry said: “It is shocking that the song is being used to celebrate the death of someone.”

 

They spoke after it emerged that tomorrow’s BBC1 Radio 1 Chart Show would not ban the 51-second song — but nor would it play the whole track.

 

After a day of deliberation led by new director general Lord Hall, it was announced that they would play a five-second clip in a news bulletin to explain why it was in the charts.

 

 

 

The move was immediately dubbed “a good old BBC fudge”.

 

In our Sun Online poll, 69 per cent of 12,345 people who voted said the BBC SHOULD play the song.

 

Grandmother Ruth — one of just three of the film’s 124 Munchkins still alive — was horrified to learn Ding Dong! was at the centre of political controversy.

 

She said: “Why are they allowed to use the music like that? I thought British people were better than that. I don’t understand them.”

 

 

 

In 2007 she was proud to be one of seven Munchkins at the unveiling of a commemorative star on the Hollywood Walk of Fame.

 

Ruth, who lives in Las Vegas, Nevada, said: “All over the world The Wizard Of Oz is cherished as a family film.

 

“Mums and dads and their children sit down to watch it together and enjoy the story, songs and dancing.

 

“Everyone loves the movie — it is magically heart-warming. This campaign makes me feel very sad.”

 

Jerry, of Los Angeles, California, said: “The Wizard Of Oz is a great family film. It’s a shame that the song is being used it this way.

 

“Thatcher was a great lady and I’m upset she has passed away. It’s sad that people feel like this.

 

 

 

“I’m so proud to be a part of one of the greatest films of all time — I hope people respect the memory of the film forever more.”

 

The song stormed to No1 in the iTunes chart, and No3 in the official UK chart, since former PM Lady Thatcher’s death on Monday at the age of 87.

 

The BBC branded the campaign “distasteful” but Radio 1 controller Ben Cooper complained they had still been caught “between a rock and a hard place” when it came down to a banning decision.

 

He said: “On one side there is the understandable anger of large numbers of people who are appalled.

 

“On the other there is the question of whether the chart show can ignore a high new entry which clearly reflects the views of a big enough portion of the record-buying public to propel it up the charts.

 

 

 

“Above all, in the middle of this furore is a grieving family.

 

“Nobody at Radio 1 wishes to cause offence but nor do I believe we can ignore the song. I’ve therefore decided exceptionally that we should treat the rise of the song as a news story.”

 

Tory MP Rob Wilson agreed: “It’s a good old BBC fudge. They should play the song because Mrs Thatcher stood for freedom.”

 

But another Tory MP, Sir Gerald Howarth, insisted: “Playing even part of this song will play into the hands of the Trots who have never forgiven Margaret Thatcher for destroying socialism.”

 

Meanwhile the lefty music producer behind the Ding Dong! campaign insisted it was “cathartic” because it gave those who hated Lady Thatcher “a voice”.

 

Mark Biddiss, 39, denied trying to cause offence. But he added: “To have something like this marking her death shows how strongly people feel.

 

 

 

“This is a group of normal people who want to be heard.

 

“It’s a very cathartic experience for a lot of people who feel that for many years they haven’t been listened to. I think they now feel they are being listened to.”

 

Biddiss’s Facebook page promotes the song — as well as selling items such as “beautifully crafted Margaret Spatulas” for £29.99.

 

Last night experts said New Yorker Yip Harburg — who wrote the song along with the Oscar-winning Over The Rainbow — may have ENJOYED its political revival.

 

He was born Isidore Hochberg but it is thought he may have changed his name in tribute to the Young People’s Socialist League — the student arm of the American Socialist Party — who were known as Yipsels.

 

US music giant Time Warner now owns the rights to Ding Dong! and is facing calls to hand over any profits from it.

 

Sun reader Andy Foster said: “Contributing to building some sort of memorial to Lady Thatcher would be funny and a kick in the teeth to the people that thought it was clever to organise this.”

Meena Rahman’s Family Made A Genuine Mistake

April 12, 2013

I’ve just seen this message from Sue Marsh on Facebook:

If you saw the #jobsformeena hashtag yesterday, Meena’s family would like to confirm that they made a genuine mistake & ask that tweets and posts from yesterday are no longer circulated. They also thank everyone for their concern. The ESA process is ridiculously complicated and most people get very confused by they aggressive tone of Atos/DWP letters.

I’m relieved to read this message, for Meena and her family. I have nothing but good wishes for them.

If you follow Sue Marsh on Facebook, please click the link and read the comments below her post. They are interesting.

Video Of Meena Rahman- Disabled Woman Found Fit For Work By ATOS

April 12, 2013

This is Meena Rahman. This video was posted by her sister, Farzana, after ATOS found Meena fit for work yesterday.

No readers, I can’t believe it either.

I’m posting this video with all good wishes to Meena, Farzana and family because I think it should go viral to give people some idea of what ATOS are really like.

 

ATOS Tell Woman With Mental Age Of Three To Get A Job

April 12, 2013

UK readers. UK celebrities. Journalists. Bloggers. Carers. Campaigners.

If you do one little bit of disability rights campaigning today, please make it reading this post and sharing it everywhere.

ATOS have told a woman with a mental age of three, severe learning disabilities, severe CP, and incontinence to get a job.

A job.

That’s not satire, readers. Honestly.

Look at the photo of her in the post linked above and tell me she can work. Go on, I dare you.

 

UK’s First Competition For Marginalised And Disabled Writers

April 11, 2013

This is exactly my cup of tea. I thought it might interest some of my UK readers.

Can Have Sex Will Have Sex

April 10, 2013

This is due to air this month on Channel 4. If anyone knows when it’s on, please let me know. I’d like to watch it.

Sex is everywhere. But what if something stood in the way of your experiencing a fulfilling sex life?

This sensitive and honest documentary takes a candid look at the sex lives of four disabled individuals. From the recently paralysed Karl who is coming to terms with life without an erection, to cerebral palsy sufferer Pete whose hoist helps him into every conceivable sexual position and has ambitions to be the UK’s first disabled porn star.

Leah, a 24-year-old woman with brittle bone disease won’t let her body’s limitations get in the way of an adventurous sex life. Twenty-six-year-old John has learning difficulties and his mother has taken the momentous decision to hire him an escort to help him lose his virginity.

Warm, funny and extraordinary in the range and scope of access to people’s very personal stories, the film explores the different ways disabled people deal with the barriers they can face in trying to fulfil that most basic human need – sexual intimacy.

Liz Crow Bedding Out: The Live Stream

April 10, 2013

I’ve just discovered that Liz Crow has set up a live stream for her Bedding Out project. If you enjoy watching brave disabled women sleep, this is for you!

BBC Reporter Trying To Live On £53 Per Week

April 10, 2013

A BBC reporter has begun her attempt to live for one week on no more than £53.

Emma Vardy’s mission was inspired by a petition signed by 450,000 people urging Work and Pensions Secretary Iain Duncan Smith to do the same.

The debate follows a welfare shake-up including cuts to housing benefit for some social housing tenants.

Emma has been canvassing opinion in Oxfordshire. Her attempt concludes on Friday.

Liz Crow Tells The Guardian Why She’s ‘Bedding Out’

April 10, 2013

Here.

Lauren Jones

April 9, 2013

All this week, BBC News is marking the inspirational achievements of young people who are recipients of Rotary Young Citizen Awards.

In the second of five special reports, Ellie Crisell meets Lauren Jones who overcame adversity to become number one in the world in junior girl’s wheelchair tennis.

The Rotary Young Citizen Awards will be presented on the BBC News Channel at 11.30am on Saturday 13 April.

Government To Pay Support Costs To Winterbourne View Victims

April 9, 2013

I’m pleased to read this, though I realise some people may not be.

 

A £25,000 contract to support victims from the Winterbourne private hospital will be paid from public funds.

The Department of Health has awarded the contract to the charity Respond to provide family support groups and psychotherapy.

Respond said it would offer the assessments to people who had suffered abuse-related trauma.

Castlebeck, which ran the home near Bristol, went into administration in March.

It followed an investigation by the BBC’s Panorama programme, broadcast in May 2011, into physical abuse and neglect at the home.

Last year, 11 care workers admitted a total of 38 charges after they were secretly filmed abusing patients at the home, which looked after people with severe learning difficulties.

Six were jailed, the remainder received suspended sentences.

PIP: Case Studies

April 9, 2013

Three people who will be affected by PIP told their stories to the BBC yesterday. One is a soldier who says he will be better off financially under PIP. One is Lisa Egan, friend of Same Difference. The other is a woman who will be worse off because she will lose her Motability car.

You are welcome to leave your own thoughts below.

 

KIDS launches free eLearning for parents of disabled children and young people

April 8, 2013

A press release from Kids:

Today KIDS launches a new eLearning package for parents and carers, aimed at explaining the key points about personalisation, personal budgets and how they may impact on their family life.

 

KIDS is the charity that works with disabled children, young people and their families. As part of the ‘Making it Personal’ project, sponsored by the Department for Education, KIDS has created an eLearning suite aimed at parents and carers of disabled children and young people.

 

Anyone wishing to access the free eLearning can do so by creating an account here: http://elearning.kids.org.uk/login/index.php

 

The eLearning is intended as a simple walk through some of the information presented in the ‘Taking a Personal Approach: A Parents Guide to Personal Budgets’ handbook.

The handbook was produced earlier this year for parents and carers about personal budgets and how ongoing government changes may affect them.

 

The Parent’s Handbook is still freely available in long and short versions for ease of use. You can download it from the KIDS website www.kids.org.uk/information/100347/106207/106214/106217/for_parents_and_carers/

 

KIDS worked together with OPM, Disability Rights UK, In Control, NAFIS and the Daycare Trust under the ‘Making it Personal’ project to develop a suite of resources, including guidance for commissioners and others in children’s services on how to commission for personalisation, along with a handbook for parents and carers of disabled children on what personal budgets are and how they can be used.

 

Work on the current ‘Making it Personal’ project ceased at the end of March 2013, however all of the resources are still available online to use.

For more information on this project, please visit www.kids.org.uk/mip

 

This work was developed in response to the Department for Education’s Green Paper Support and Aspiration: A new approach to special educational needs and disability (DfE 2011)

 

KIDS works across all of England. The charity has also pioneered a range of approaches for working with disabled children including Portage (home learning), Direct Short Breaks and England’s first inclusive adventure playground.

Nihal by Rahila Gupta- Performance 2 May, 7.30pm

April 8, 2013

I have been asked to publicise an upcoming performance of this very moving production. Please see the flyer below for full details.

Haymarket flyer

Three Disabled People Issue Legal Challenge Against PIP 20 Metre Criteria

April 8, 2013

A press release from We Are Spartacus:

Lawyers have announced that they are taking legal action against the Government on behalf of three disabled clients who are challenging the decision by Ian Duncan Smith, the Secretary of State for Work and Pensions, to bring in more stringent measures to qualify for mobility benefit.

The three clients currently receive disability living allowance (DLA) including the higher rate of the mobility component. This non-means-tested cash benefit has been available since 1992 and provides people with assistance towards the costs of an adapted car, powered wheelchair or scooter through the Motability scheme.

Under DLA a person is entitled to the higher rate of the mobility component if they are ‘unable or virtually unable to walk’. Usually claimants are considered to be ‘virtually unable to walk’ if they cannot walk more than around 50 metres.

The new Social Security (Personal Independence Payment) Regulations 2013 (PIP) have reduced this benchmark distance to 20m. The Government itself has estimated that around 428,000 fewer people* will, as a result, be eligible.

Kim Storr has rheumatoid arthritis and other severe progressive conditions and her mobility is affected by joint swelling and pain. She relies on crutches. She currently receives DLA including the higher rate of the mobility component. Ms Storr needs an adapted vehicle to enable her to go out independently.

Steven Sumpter has ME, which has caused him increasing mobility problems. He can walk short distances with a stick, but is otherwise dependent on a wheelchair.  He was assessed as eligible for the higher rate of the mobility component of DLA last year, which he has used to lease a Motability car.

The third claimant is protected by an anonymity order to protect their identity.

Law firms Leigh Day and Public Law Solicitors argue that a consultation process set up by the Government to reassess the benefit was flawed. The Secretary of State did not consult on the proposal that the limit would be reduced to 20 metres. This suggestion was only introduced after all the consultation stages had passed.

Consultees were therefore denied the opportunity to comment on the proposal or to explain to the Secretary of State how such a restriction to the benefit will affect them and their independence.

The 50 metres distance is widely recognised in relation to other disability benefits and in guidance on the built environment, to represent a minimum functional level of mobility.

Proceedings have been issued against the Secretary of State for Work and Pensions, Ian Duncan Smith, claiming that the new regulations regarding the PIP payment are flawed and unlawful. They argue the policy-making process failed to properly consider the practical impacts the withdrawal of the benefit will have on people with significant mobility impairments.

Rosa Curling, from the Human Rights team at Leigh Day who is representing two of the disabled clients said:

“We have advised our clients that the consultation undertaken by the Secretary of State was unlawful. People were not properly informed that the limit might be reduced to 20 metres and had no opportunity to provide the Secretary of State with their views on this proposal.

“Removing this vital benefit to disabled people will have a devastating effect on many people’s lives and their ability to access and be part of our communities. The Secretary of State has a legal obligation to consider such impacts before deciding whether to limit access to this benefit.”

Karen Ashton from Public Law Solicitors who represents Mr Sumpter, said:

“What is at the heart of this legal challenge is fairness.  The extra costs of getting out and about for those who have severe mobility problems can be huge. The higher rate mobility benefit can make the difference between being able to do everyday things that everyone else takes for granted  – such as doing your own shopping and visiting friends and relatives  –  and only leaving the house for absolutely essential appointments. But the Government failed to mention the reduction to the 20m threshold in their consultations with disabled people and so those who are potentially affected have not had the chance to explain how devastating the consequences will be.”


* DWP: PIP Reassessments and Impacts, December 2012 (http://dwp.gov.uk/docs/pip-reassessments-and-impacts.pdf)

********************************

PIP Has Begun To Come In

April 8, 2013

Today is the day disabled people in the UK hoped would never come. Personal Independence Payment has begun to replace Disability Living Allowance- in the North of England. Here is the Guardian‘s take on this major event in the lives of disabled people in the UK.

Reforms to disability benefits will end the ‘ridiculous’ system that gives people lifetime awards, Iain Duncan Smith has said as the disability living allowance is replaced by the new personal independence payment (PLA).

The work and pensions secretary said claims in disability benefit had more than doubled in some parts of the country ahead of the changes.

His comments came as nearly half a million people call on the Tory cabinet minister to live off £53 a week for a year in a petition being delivered to his office on Monday.

“Seventy per cent of people on it have lifetime awards which means no one sees you ever again. It doesn’t matter if you get better or your condition worsens – it’s quite ridiculous,” Mr Duncan Smith told the Daily Mail.

“We’ve seen a rise in the run up to PIP. And you know why? They know PIP has a health check. They want to get in early, get ahead of it. It’s a case of ‘get your claim in early’.”

He argued that rigorous new health checks for claimants were “common sense”.

It is the latest in a series of radical welfare changes that started on Saturday, when working-age benefits and tax credits were cut in real terms with the first of three years of maximum 1% rises – well below the present rate of inflation.

Trials will also begin this month in four London boroughs of a £500-a-week cap on any household’s benefits and of the new universal credit system.

On Monday morning protesters, angry at sweeping welfare reforms and the minister’s claim he could live off £53 a day if he had to, will deliver a petition bearing 450,000 names to the Department of Work and Pensions.

Duncan Smith has already dismissed the petition as “a complete stunt”.

Musician and part-time shop worker Dominic Aversano, from Twickenham, near London, started the online petition. He will deliver the results Caxton House in Tothill Street with disability campaigners who say they are at the sharp end of welfare reforms. Aversano, 28, said: “When I started this petition I never imagined the level of support it would get, and the amount of encouragement people would give me. It has sent a powerful message to this government, showing the level of opposition to their vicious welfare cuts.

Protester Heather Simpson, 46, from Battersea, London, said: “My husband is a nursery worker but his low salary means we are forced to claim housing benefit.

“As a wheelchair user the housing association provided me with a three bedroom house and now we’re going to be hit by the bedroom tax. I signed the petition because I want Iain Duncan Smith to live on £53 per week so that in future he might not be so quick to dismiss the challenges faced by the people living in poverty.”

Collin Brewer To Re-Stand For Council Seat He Resigned From

April 5, 2013

Unbelievable! I hope he’s not elected!

A councillor who quit after saying disabled children should be “put down”, is standing for re-election.

Collin Brewer, 68, has submitted nomination papers to stand as an independent candidate for Cornwall Council’s Wadebridge East ward.

He resigned as an independent for the same seat amid controversy over his remarks.

Mr Brewer said the move was a “response from people” in the ward where elections take place on 2 May.

He made comments to a Disability Cornwall member at a stall at County Hall in Truro in 2011 that disabled children should be put down because they cost the authority too much money.

The comments came to light following a report by the council’s standards committee after the charity made a formal complaint.

‘Good record’

Mr Brewer faced strong criticism and he apologised to the charity, resigned as a councillor in February and said it was unlikely he would be a candidate in the May elections.

He has now confirmed that he will re-stand, saying he had a “good record” of service as a district, county and Cornwall councillor stretching back more than a quarter of a century.

Nominations close at 12:00 BST for the elections to Cornwall Council.

Steve Paget of Disability Cornwall said: “I am surprised, he had his shot and he went too far.

“It will now be up to the electorate to decide whether, despite his abhorrent comments, he should be re-elected.”

Press Association Agrees To What’s On Guides For People With Learning Disabilities And Autism

April 5, 2013

 

Jodie Marsh: Bullied- Episode 1

April 5, 2013

Readers, my Twitter timeline was on fire tonight because of Jodie Marsh: Bullied.

I wasn’t going to write about it, but I am watching as I type. I am struck and touched by the story of Sawyer. Bullies punched this young boy so hard that he has been left paralysed and needing to use a wheelchair.

Readers, we can never let something like this happen here in the UK. That’s why I fully support Jodie Marsh in her efforts to get US anti-bullying techniques introduced in the UK.

Let me just add that as a disabled child in a mainstream school, I personally experienced my fair share of unpleasant comments and even some bullying for lunch money. Luckily, no one at school ever harmed me physically, and my teachers, when told, were very supportive.

Bullying affects all children, but for disabled children, the social side of life in mainstream schools is more likely to be particularly unpleasant.

All children go to school to learn and all children have every right to feel completely safe while doing so. We should all do all we can to make sure this happens in every school everywhere.

 

 

George Osborne Caught Parking In Disabled Bay

April 5, 2013

BOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOO

george osborne

Do you believe this, readers?

Chancellor George Osborne did not realise a car he was travelling in was parked in a disabled bay at a motorway service station, the BBC understands.

The Daily Mirror published a photograph of the chancellor getting into a Land Rover parked in the marked bay.

But a Treasury source said Mr Osborne had been dropped off near the M4 service station entrance to buy lunch.

The unmarked police Land Rover was not driven by the chancellor at any point, said the source.

The incident is understood to have taken place on Wednesday.

The Treasury source told the BBC the chancellor had got into the car and left the scene without realising that it had been parked in the bay.

Mr Osborne did not condone his driver’s parking decision, the source added.

But a witness reportedly told the Mirror: “I couldn’t believe my eyes when I saw his driver pull into the disabled parking bay.

“It’s not as if they were in a rush to move. The car park wasn’t exactly full and there were plenty of other, ordinary spaces.”

Saudi Paralysis Sentencing ‘Grotesque’ Says UK

April 4, 2013

And I agree. I can’ t believe this case. This is not religion. It’s nothing but madness.

The UK has urged Saudi Arabia not to carry out a reported sentencing of paralysis for a Saudi man as punishment for paralysing another man.

A Foreign Office spokesperson said London was “deeply concerned” by the sentence, describing it as “grotesque”.

Such punishment was “prohibited under international law”, the official added.

Saudi media reports earlier said the 24-year-old man could be paralysed from the waist down if he could not pay his victim £250,000 in compensation.

Ali al-Khawahir was 14 when he stabbed a friend in the back in the Eastern Province town of al-Ahsa. He has been in prison for 10 years.

The judge in the case has reportedly interpreted the Islamic law of qisas, or retribution, that Saudi Arabia follows as meaning that he in turn could face being paralysed.

Amnesty International has described this as tantamount to torture.

The sentencing is the latest example of Saudi Arabia’s fundamentalist interpretation of Islamic law attracting international criticism.

BBC diplomatic correspondent Jonathan Marcus says the Foreign and Commonwealth Office’s comments mark an unusually strong plea to the Saudi authorities in what is, by any standards an unusual and disturbing case.

Successive British governments have struggled at times to harmonise their concerns about human rights in Saudi Arabia with the fact that the Kingdom remains a key ally and a major customer for British weaponry, he adds.

Peter Oborne In The Telegraph On DLA And DLA Reforms

April 4, 2013

To cut a long pile of scribble short, here’s something the Telegraph published yesterday:

On Monday, the disability living allowance – for so long a charter for deceit and recipe for state-sponsored idleness – will be replaced by a far more humane and realistic system.

The scribbler of that nonsense was Peter Oborne.

Sir, DLA claimants are neither lazy nor idle. We do not choose to be disabled. We do not choose to claim benefits. We do not choose not to work.

And by the way, Sir, in my personal opinion, the new system, PIP, will be neither humane nor realistic.

Disability campaigner @latentexistence is running a hashtag, #DLASurvey, in response asking disabled people what we spend our DLA on. Readers, please read it, and then tell me we don’t need DLA.

Philpott Family: Were Benefits To Blame?

April 4, 2013

Like most sensible people, I agree with Pamela Nash.

Mick Philpott, who killed his children when he set fire to their house, will be sentenced later today.

Many UK newspapers have questioned whether the case should be seen as an isolated incident or whether it tell the story of a wider picture.

In the Daily Mail Andrew Wilson said that those six children were killed not only by their father but also by the welfare system, which has been corrupted beyond repair. The front page of the Mail had the headline: “Vile product of Welfare UK”.

The reaction was meat with outrage by others, including Labour MP Pamela Nash.

Speaking to the Today programme’s Sarah Montague, Mr Wilson explained that the benefits were the “motives for this terrible crime”.

Pamela Nash said that the Daily Mail head line was “repugnant” and said that it was “offensive to those throughout the UK who survive on benefits” to link this crime to welfare.

First broadcast on BBC Radio 4’s Today programme on Thursday 4 March 2013.

DBC report Shows How ATOS And Capita Will Deliver PIP Assessment

April 4, 2013

Linking to this piece I found that seems to be a press release.

Is It Hard To Work Out Your Class If You’re Disabled?

April 3, 2013

An interesting post from BBC Ouch on the class survey. Readers, I’m off to use the class calculator!

The BBC has published the results of a survey on the nation’s class. Its basis is that the old class system – lower, middle and upper – is no longer relevant.

Previously class was strictly determined by occupation, wealth and education, but this new method suggests it’s more relevant to categorise people by economic, social and “cultural capital” indicators.

Particularly relevant to the disability experience is that you may be a different kind of person to what your income, education, occupation or housing suggests.

You could be unemployed, you may consider yourself unemployable, but you may have a masters degree, enjoy opera and hang out with CEOs and surgeons. if that’s you, then what defines your class?

Disability campaigner Kaliya Franklin tweeted earlier that she is not sure what class she belongs to. She says she is: “Middle class by upbringing & education but underclass due to benefit receipt?”.

After taking the new class calculator test on the BBC website, Spoonydoc Tweeted that she ended up in the lowest class grouping: “I was precariat. Test very skewed by being housebound. Changed to emergent service worker otherwise.”

What is class anyway?

Well, it’s all about your essence and standing, your station in life, your status, your regardability, your power. It gives clues as to what kind of consumer you are, what your politics might be, and all sorts of other unsumuppable traits. If you can be pigeonholed, you can be broadly understood as a person or householder, and targeted accordingly by those who need to know: advertisers, political canvassers, statisticians, town planners, who knows what.

Many disabled people take a non-standard route through life. It’s recognised that opportunities in education or employment are harder to achieve due to physical accessibility or barriers that are attitudinal. Disabled people are likely to have less money as a result of having fewer opportunities.

If you don’t generate your own economic capital due to not having a regular job, the influences around you are perhaps more important in turning you into the person you are. This survey recognises that and it calculates your “cultural capital” i.e. what TV, newspapers, arts and events you are a consumer of.

Could you, or should you, be summed up by what you like? Rather than what you’re like? Should we define disabled people by what’s going on in their head rather than their bank balance? And is that power?

There are, of course, plenty of disabled people for whom disability has been no barrier to socio economic progress … but it’s not clear quite how many that is.

 

Lighting Landmarks Up In Blue For World Autism Day

April 3, 2013

How beautiful is this video of bright blue landmarks! Something special for our Autistic friends and their carers.

Landmarks have been lit up in blue in dozens of cities around the globe to mark World Autism Day​ on April 2nd.

The UN has been marking the day since 2007 to raise awareness of the condition which affects millions.

Roopa Suchak reports.

How Benefit Claimants Really Feel

April 3, 2013

Ruth Patrick spoke to some benefit claimants about how we really feel. She explains her findings here.

The Most Toxic Issue Facing Those With Mental Health Problems Is Stigma

April 3, 2013

Says Clare Allan in today’s Guardian.

We Are About ‘More Than The Cuts, And More Than The Paralympics’

April 2, 2013

It’s April 2013, and the cuts are about to bite us hard. So what can disabled people do now? Kaliya Franklin, Martyn Sibley and Tanni Grey Thompson join current Paralympians, politicians and a special parent to answer this very important question.

Osbourne Distances Himself From Thatcher Over Disability Benefits

April 2, 2013

From today’s Guardian:

George Osborne has buried a key legacy of Margaret Thatcher when he condemned the way her government placed thousands of unemployed people on disability benefits as “quick-fix politics of the worst kind”.

In an attempt to show an even-handed approach, as he embarked on a staunch defence of the coalition’s welfare changes, the chancellor criticised “governments of all colours” that have “parked” too many people on disability benefits.

The chancellor sidestepped questions about whether he could survive on £53 a week after Iain Duncan Smith said he could if he had to.

“I don’t think it is sensible to reduce this debate to an argument about one individual’s set of circumstances and the example that was given on the BBC radio,” Osborne said after the Today programme cited a market trader David Bennett who lives on that amount.

The chancellor added: “We have a welfare system where actually there are lots of benefits available to people on very low incomes. There is jobseeker’s allowance and income support, there is a working tax credit, there is council tax benefit, there is housing benefit. So there are a number of different benefits there.

“This debate is not about any individual. This is about creating a welfare system that rewards work, that supports people who do the right thing, that helps those that want to get on in life and has a regard for the many millions of people who work very hard and pay their taxes and expect their money to be well spent.”

Osborne made his remarks as he addressed workers at the main Morrisons supermarket distribution centre in the south-east of England at Sittingbourne in Kent.

The Treasury chose the centre because it is based in the swing parliamentary seat of Sittingbourne and Sheppey, and where the Morrisons distribution workers earn an average of £20,000. Tory research shows that the government’s welfare changes, notably the household benefit cap of £26,000, will appeal to such workers, who reportedly resent seeing their taxes fund benefits.

Amid criticisms that he is turning the clock back to the 1980s, the chancellor criticised the Thatcher government for the way it placed many unemployed people on disability benefits. The chancellor said: “Governments of all colours let too many unemployed people get parked on disability benefits, and told they’d never work again. Why?

“Because people on disability benefits don’t get counted in unemployment figures that could embarrass politicians.

“It was quick-fix politics of the worst kind – and the people who lost out were you, hard-working taxpayers who had to pay for all this and those on disability benefits who could have worked but were denied the opportunity to do so.”

The chancellor was also highly critical of the Labour party, which says the welfare changes will penalise poor people. In remarks that appeared to be aimed at the shadow chancellor, Ed Balls, Osborne said: “In recent days we have heard a lot of, frankly, ill-informed rubbish about these welfare reforms. Some have said it’s the end of the welfare state. That is shrill, headline-seeking nonsense.

“I will tell you what is true. Taxpayers don’t think the welfare state works properly any more. When did this start to happen? When we created a system that encouraged people to stay out of work rather than find a job.

“Our reforms are returning welfare to its most fundamental principles – always helping the most vulnerable, but giving people ladders out of poverty. And the politicians who should have to explain themselves are those who have given up on trying to get people working again.”

The chancellor reassured one Morrisons employee, who raised concerns about eastern European workers from the EU who arrange for UK child benefit to be paid to their families back home. Osborne said the government was working hard to stop this, though he said ministers had to work within EU law.

The chancellor said: “The truth is we are absolutely wrestling with that issue at the moment and trying to find a way that is legal to make sure that benefits do not got to the continent of Europe. The EU rules are pretty tough and we can’t act illegally because someone would just go to a court and get it overturned. But we are looking at all sorts of ways to make sure that British taxpayers pay for benefits that are paid for in this country rather than abroad.”

In a response, Ed Balls said: “George Osborne should be straight with the British people and admit that millions on middle and low incomes are paying the price for his economic failure, while he gives a huge tax cut to millionaires this week.

“Figures from the independent IFS show that the average family will be £891 worse off this year because of tax and benefit changes since 2010. On top of this incomes are being squeezed further as prices rise faster than wages, yet the chancellor refuses to rule out cutting or freezing the minimum wage.

“The benefits bill is rising under this government because our economy is flatlining, inflation is rising and unemployment is high. The best way to get the benefits bill down is to get our economy growing strongly and get people back to work. Ministers must explain why they will not back Labour’s plan for a compulsory jobs guarantee for the long-term unemployed.”

Changes To Appeals System Could Leave Benefit Claimants Penniless

April 2, 2013

From today’s Guardian.

Amid the avalanche of welfare reforms being implemented by a government intent on reducing the benefits bill by £18bn, one controversial measure that seems to have fallen below the radar is a change to the appeals process for welfare benefit claimants.

There are fears that the change, which will deny people the right to appeal decisions about sickness and disability benefits until the Department for Work and Pensions (DWP) has first reconsidered their case, could leave claimants penniless. Moreover, its introduction, just as legal aid is abolished for many welfare benefit cases, could leave thousands of vulnerable people unable to access the law to secure the income they are entitled to. The double whammy has been attacked as “a disgrace and a scandal”.

The revised appeals process, called “mandatory reconsideration”, will be applied to anyone who, from October, fails the controversial work capability assessment (WCA) and wants to challenge the decision to deny them sickness benefits.

The government has refused to set a time limit for how long the DWP could take to reconsider a judgment by the mainly computer-led fit-to-work test, but while cases are being reconsidered, claimants who were on employment and support allowance (ESA) will no longer be allowed to claim this sickness benefit and will be automatically transferred to jobseeker’s allowance (JSA).

Liz Sayce, chief executive of Disability Rights UK, warns that putting people on to JSA, a benefit that requires them to look for work, when they aren’t well enough could have dire consequences. “We don’t believe that the work capability assessment, as it stands, is reliable enough to be putting these numbers of people on jobseeker’s allowance, [and] on to this regime of requirement to comply with the job-seeking plan. At worst, what it could mean is that people then lose their eligibility for benefit, and because they are not able to comply, they could potentially have no income.”

She adds: “Just keep people on the [sickness] benefits. That will reduce anxiety and the risk of people falling out of any benefit income at all.”

The DWP says that people claiming JSA would only be expected to “undertake activity suitable for their condition”, but disability campaigners fear that jobcentre staff will be ill-equipped to make such judgments.

Citizens Advice (CA) says it supports reconsideration of cases before an appeal because, if done properly, it should ensure the correct evidence is gathered, cut the rate of appeals and reduce stress for the claimant. However, Sandie Lock, CA welfare benefits specialist, voices the concern that the policy is driven by a desire to cut the cost of appeals and that could mean “vulnerable clients will be dissuaded from proceeding with the appeal or may just give up because it’s taking too long”.

“I think cost is a key factor. It’s obvious that the number of appeals, particularly when you look at ESA, has been escalating, partly due to changing the descriptors and making it harder for people to qualify, but also because of the poor quality of decision making,” she says.

Since its introduction in 2008, charities, doctors and MPs have added their voices to the growing chorus of alarm over the reliability of the fit-to-work test and the large number of people who appeal against judgments (up to 50% of all those who go through the test). There have been more than 600,000 appeals, of which around 40% have been successful, costing the government about £50m a year. This is in addition to the £100m it is paying the IT company, Atos, to carry out the test.

Under the revised appeals process, claimants who are still refused sickness benefit following a DWP reconsideration, will need to lodge their appeal directly with Her Majesty’s Courts & Tribunals Service and, in theory, their case will be heard within 28 days.

Disabled people who are starting to be moved from disability living allowance (DLA) to the new personal independence payment (PIP) and who, if they fail the eligibility test, want to question the decision will also be affected by the revised appeals process. So, too, will recipients of universal credit, the government’s flagship welfare reform, being piloted from this month.

The potentially lengthier reconsideration process, coupled with seismic cuts to legal aid funding, which will deny people free help in gathering evidence from advice centres or law firms for their case, could deter people from appealing decisions altogether.

Lord Bach, shadow justice minister and former legal aid minister, says that, in effect, the government appears to be heading off claimants from all angles.

No coincidence

In a withering attack on the minister for welfare reform, Lord Freud, in the House of Lords earlier this year, Bach said: “After 1 April, for those who do not have the means to pay – the vast majority, I would suggest, including many disabled people – where will they get the legal advice they need? I used to think it was just ignorance that had led Her Majesty’s government to abolish legal aid in welfare benefit cases. Now I am forced to the view, as I think are many fair-minded people from outside, that it is too much of a coincidence that these legal-aid cuts come at exactly the same time as radical welfare reform. These things are connected – it must be a deliberate government policy to bring in radical and damaging welfare reforms at the same time as making it impossible for the vast majority to appeal against these decisions, which affect their daily lives. I feel strongly about this. It is a disgrace and a scandal and something that has not been talked about enough.”

Freud replied that first-tier tribunals, where appeals against fit-to-work judgments would be heard, did not require legal representation because they were not adversarial.

Yet Paula Twigg, advice services director, at the Mary Ward Legal Centre in London, disagrees: “It is still a legal process. The judge and the rest of the panel still have to look at what the law says and apply the person’s facts to the law. This is going to be horrendous for clients and advice centres.”

The centre used to have a legal aid contract to help around 800 people a year. The majority were disability benefit claimants and the success rate was about 90%. Twigg points out that the funding the centre received to pay for supporting evidence from consultants and GPs will also now have to be supplied by the claimant.

Employment minister Mark Hoban stresses that getting the WCA “right first time” is his “absolute priority”. He adds that the changes the government is making for people who wish to challenge a fit-for-work decision will give them the opportunity to submit more medical evidence and resolve any disputes with the DWP without having to resort to a lengthy appeals process. “This will help to ensure that decisions are as accurate as possible so people get any benefits they are entitled to at the earliest opportunity. It will also reduce unnecessary demand on the courts,” he says.

Yet charities believe that if the government was serious about getting the fit-for-work assessment right first time, it would change the test rather than the appeals process. As Edward Graham, advice and rights manager of the Child Poverty Action Group, says: “The test for incapacity for work is wrong. It’s too harsh, the threshold has been set too high, and that is why many, many thousands of sick and disabled people are passed as fit for work when they are not.”

‘Without CAB I wouldn’t have won the appeal’

Ronald Sultanti, 54, was a high earning manager of a security company. Extreme stress at work caused him to suffer acute anxiety, depression and mental collapse. He was fired from his job in September 2011. Three months later he failed his fit-to-work test. With the help of his local Citizens Advice bureau in Leytonstone, east London, he won his appeal in January 2013. He says: “I had a terrible anxiety attack [at work]. I’ve never felt anything like it in my life. And I don’t know what happened to me after that, to be honest. I don’t even try to think about it because it’s such a horrible place to be in. I went on medication and for three months I was literally in bed. I lost about three stone. I don’t know where I was, but I just couldn’t function. It was a horrible, horrible time and then the depression set in and that’s when life didn’t seem worth living.

I had the [work capability] assessment and I thought he [the assessor] understood my condition fully, yet in the light of exactly the same information I gave at the tribunal, he gave me nil points and the tribunal gave me 15. Without the free help of the Citizens Advice bureau I wouldn’t have won the appeal. They understood my disability. They followed up on the documentation and made sure that everything was done. Without them I probably wouldn’t have even attended the appeal. Without their help I could not have functioned. I would still be without money.”

Andrea Begley- Visually Impaired Singer On The Voice UK Season 2

April 2, 2013

Last year, I really enjoyed The Voice. Why? Because, in the beginning at least, it is based on the beauty of voices, not faces. It is based on talent and nothing but talent.

I didn’t know that series 2 was starting until I saw a little clip on TV on Saturday night. Unfortunately, I quickly forgot all about it.

That was until I found this Tweet in my timeline this morning:

A quick search revealed that Andrea Begley, 26, is the niece of country star Philomena.

What glaucoma makes her lack in eyesight, she makes up for several times over in both voice and song choice. Readers, I think The Voice may just have found its very own Susan Boyle.

I will be following Andrea’s progress with interest. She has my very best wishes for the competition.

For those who missed it, here’s her audition:

That, readers, is what I call DisAbility.

World Autism Awareness Day 2013

April 2, 2013

Today is World Autism Awareness Day.

Logo_WAAD

How will you celebrate Autism today?

Autism Awareness Month Starts Today

April 1, 2013

 

How will you celebrate Autism?

News Headlines: Monday, April 1st 2013

April 1, 2013

White Sticks That Bark Invented By Scientists– Disability Now

A group of Brunel University Science Professors have won this year’s ‘Best New Accessible Invention’ Award at NAIDEX with the creation of a new aid for blind people. A white stick with a difference- it barks to guide its user in the right direction. Project leader Professor Doolittle said: “Is your guide dog at the vet? Never fear, from midnight on April 1st, 2013, the barking white stick will be here. Buy one of these and your guide dog can become a pet!”

Chocolate Noses Restore Lost Sense Of Smell– Able Magazine

From the inventors of chocolate eyeballs and chocolate ears come chocolate noses! These sweet treats will restore a lost sense of smell. Users are advised not to eat them before entering a toilet.

Patients With Cerebral Palsy Advised Against Travel To Australia- Bobath News

We write to inform patients and their families that The Bobath Centre officially advises against travel to Australia for patients with Cerebral Palsy. From London, a flight to Australia lasts approximately 26 hours. We fear that after two flights of this length, our patients will return significantly stiffer. Treating children who are that stiff would simply create more work for us, which we are trying to avoid.

Spaghetti Wheelchairs To Go On Sale- Tesco Magazine

From the creators of spaghetti hoops, that old childhood favourite, comes an inclusive spaghetti shape- wheelchairs. Tesco are proud to sell this new food as we pride ourselves on making all customers feel included and satisfied by what they see on sale at our stores. The range will go on sale at midnight on Monday, April 1st at your local Tesco store.

Easter Bunnies With A Difference- The Tablet

Easter Greetings, readers. We hope you will enjoy a relaxing long weekend of Mass and chocolate treats. We would like to invite you to your local Catholic Church on Easter Monday, April 1st, at midday where senior priests will be pushing the Easter Bunny around the garden in his wheelchair to hand out sweet treats to the child in your life. If this child is disabled, we hope they will feel included. For those who are not disabled, we hope the sight of a rabbit in a wheelchair will be an educational experience.

UK READERS PLEASE READ & SHARE: OUR MINISTER HATES US!

March 31, 2013

An email I have just received from reader Linda, published here because I agree with every word she says about McVey. Especially after reading pile of scribble in link to Daily Fail.

Hi,

I feel so upset I had to email someone, you were the only one I could think of. 

I know this is the Daily Mail, but… how could anyone write this:

http://www.dailymail.co.uk/news/article-2301735/I-bogus-disabled--DO-better-Ex-TV-host-new-Work-Minister-UKs-THREE-MILLION-claiming-disability-benefit.html

It makes me feel so sad, marginalised, under threat…

You will probably have heard this article before you get this email. But I was so upset by the tiny excerpt I heard on the radio "many disabled people are nothing of the sort", it has ruined my day, apparently said by the "Minister for the Disabled" - so glad we are thoroughly supported by those in charge!

Thank you truly for the work you do to spread the truth about disabled people. I am so very sad that the message in this so-called newspaper is still being shouted from the rooftops. Why do some people hate disabled people so much?

Kind regards, 

Linda.

Updated Monday 1 April: I've started a petition to Sack McVey as Minister For Disabled People. Please share.

CF Bug Can Spread, Finds Study

March 31, 2013

A dangerous infection which is becoming more common in people with cystic fibrosis can spread between patients, UK researchers say in The Lancet.

Doctors previously thought the Mycobacterium abscessus bacteria could only be caught from water and soil.

But hospitals around the world may now have to change the way patients are treated, the study says.

Around 3-10% of cystic fibrosis patients in Europe and the US are infected with the hard-to-treat bug.

There are around 9,000 people with cystic fibrosis in the UK although around one-in-25 people carries the faulty gene which causes the condition.

It affects the internal organs, especially the lungs and digestive system, by clogging them with thick sticky mucus which makes it hard to breathe and digest food.

Researchers writing in The Lancet do not know exactly why Mycobacterium abscessus – which is distantly related to the bacteria that causes tuberculosis – is more likely to infect people with cystic fibrosis but it could be related to problems with the immune system.

It causes lung damage, and can be incredibly hard to treat with infected patients needing months of treatment with toxic drugs.

Although the infection has been on the rise over the past decade, doctors always believed it could not spread between humans.

But by looking at DNA from almost 170 samples of the bacterium, and using that to create a family tree, researchers found that it can indeed spread from person to person.

Infection control

Study leader Dr Andres Floto, research director of the Cystic Fibrosis Unit at Papworth Hospital in Cambridge and principal investigator at the Cambridge Institute for Medical Research, said the results had prompted them to completely rethink their infection control, despite already having strict policies in place.

He explained they already treated all in-patients in individual rooms without exposing them to other patients and out-patient clinics were set up so individuals did not have direct contact with each other.

“But despite that we were seeing transmission events in hospital which tells us that transmission is likely to be indirect,” Dr Floto said.

“We are doing more research into that but we believe it gets aerosolised, for example, when people cough and because this bacteria is tough it hangs around in the air.”

All inpatients at Papworth are now treated in negative pressure rooms to prevent the spread of airborne bugs and those with the infection are cared for away from the cystic fibrosis unit.

“And in outpatients for people with this bug, we use clinic rooms only once and then not for other patients until the next day when it has been deep cleaned.”

Dr Floto said his team had already been in touch with hospitals in the UK and abroad to inform them of their findings and encourage them to change their practices and prevent the infection spreading as much as possible.

“Our results will help to protect patients from this serious infection.”

Co-author Professor Julian Parkhill, head of pathogen genomics at the Wellcome Trust Sanger Institute, said: “By sequencing the complete genomes of bacteria we can accurately describe where they have emerged from and how they pass from person to person.

“This new information has led to rapid changes in how people with cystic fibrosis are cared for in hospital to protect them from this emerging threat.”

Jo Osmond, director of Clinical Care and Commissioning at the Cystic Fibrosis Trust, said: “We will work closely with clinicians and the NHS to ensure appropriate measures are in place to deal with this issue.

“It is reassuring that this issue has been picked up early and that we are working positively to put in place measures to ensure cross-infection risks are reduced to a minimum.

“People with cystic fibrosis who have concerns about this issue should speak to their clinician.”

My Son’s Not Rainman!

March 30, 2013

John Williams is a single father and full-time carer for his 10-year-old son, who has autism and cerebral palsy. Both of them dread school holidays but have learned how to manage them, he says, through a process of trial and error.

School. Holidays. Two words that on their own are fine, but together strike fear and horror in to parents throughout the land. For my 10-year-old autistic son, who craves the familiarity and consistency of routine, the lack of sameness, and change of pace that holidays inevitably bring, can make them an even more testing time.

“Please complete the holiday diary to tell us what you did over the Easter period,” said a letter he arrived home with on Friday. It turned out to be an exercise book. An exercise book! Forty-two pages.

He’s only off for two weeks. What do you want us to have done?

“On Monday we trekked across the Himalayas to discover a new breed of toad before popping over to South America on Tuesday to save the rainforest.”

What’s wrong with: “We spent the entire fortnight in our pyjamas watching CBeebies, eating all our meals off the lounge floor with our hands”?

But unless you want to be made to feel like you’re top of the Bad Parent Class, trips out are the order of the day. We’ve tried different outings over the years, some with more success than others.

London’s Natural History Museum is a place of wonderment and beauty… unless you’re an eight-year-old who can’t differentiate between reality and make-believe.

For The Boy, as I’m calling him for the purpose of this article, to save his blushes, it’s just a big mortuary filled with dead animals, apart from one very much alive, animatronic Tyrannosaurus Rex, that nobody sees fit to warn you about. We’ve only been once.

Libraries are good. They’re quiet, often tragically empty places nowadays. The Boy likes their calmness.

The one nearest to us has really high ceilings. So if you stand in the middle of it and scream really loudly when you can’t have the same Doctor Who book you’ve borrowed for the last 18 months, you get a brilliant echo that goes on and on and on – long after the security guard has asked you to step outside.

There’s one trip we’ve become good at though – 10-pin bowling.

Bowling alleys have a consistency that The Boy finds reassuring. The lights aren’t too bright, there’s an airiness to the place and there are no surprises. You bowl the ball. It knocks things down. They get up again. Time after time.

But even then, our visit is not like most people’s. So, if ever anyone fancies taking The Boy bowling for the school holidays, here’s a crash course on how to make the trip a success:

  • Get there early. The earlier the better. Preferably before the rest of civilisation has woken up. The concept of queuing and waiting is lost on The Boy who has no time for such trivial events.
  • Select your lane carefully. You want one that’s as far away from other human beings as possible. Other human beings cause anxiety and create noise, which only serves to divert attention from The Boy’s own attempts to make noise. If Lanes 1-4 are occupied, Lane 37 is ideal.
  • Beware rented shoes. Never underestimate just how odd a concept it is to swap your own perfectly reasonable shoes for a pair that have been worn by multiple strangers. For the duration of the game, prepare to be asked at least 17 times a minute if his own shoes are safe.
  • Always use the gutter guard. The Boy may try to convince you that he doesn’t want the guards up any more, to block the gutter, as he is now good enough at bowling. He isn’t. The barbaric yelp accompanying each ball that trundles slowly down the gutter, will make the noise he made in the library appear like a whimper.
  • Never, ever win. Introducing the concept of losing to The Boy is important. But this is the child whose frustration with the world has led to him being excluded from nurseries, childminders, after-school clubs, holiday play-schemes, mainstream schools and even a special school. So while he’s holding a 15lb bowling ball, it’s not the ideal time to take him on.
  • Smile please! The stress of this trip will probably prevent you from leaving the house again for the rest of the holidays. Take lots of pictures where you’re pretending to enjoy yourself. The aim is to fill up 41 pages of the school holiday diary. The other page can be used to write The Boy’s name.

John William’s blog, My Son’s Not Rainman, is written to accompany his comedy show of the same name, currently touring the UK before a run at this summer’s Edinburgh Festival .

Islamic Lessons For Deaf Children In UK Mosques

March 29, 2013

 

Autism Awareness Day Brightener: The Broken Cheeseburger

March 28, 2013

Wow. Just wow.

Universal Credit ‘Pilot’ Reduced To One Job Centre

March 28, 2013

Haha, a victory!

The government is to scale back some of its plans to test a radical new reform to the welfare system.

Ministers had intended to allow people to claim the new Universal Credit in four areas of the north west of England from next month.

But it has now emerged that three of the pilot programmes will not start until July.

Universal credit is intended to be the biggest shake up of the welfare system for a generation.

It will merge several earnings-related benefits and tax credits into one single payment, and is designed to be simpler, cheaper and a greater incentive to work.

But the scheme is so complicated that the Department for Work and Pensions decided to test it in four areas in the north west next month before making it available nationally in October.

However, the department now says this pilot programme will start only in one area in April – Ashton-under-Lyne.

The other three job centres – in Wigan, Warrington and Oldham – will not now start handing out universal credit until July.

A work and pensions spokesperson said there was no delay and the gradual testing was designed to make sure that the scheme was ready for everyone later this year.

“Our plan has always been to test Universal Credit in a safe and controlled way during Pathfinder to ensure we get it right for the start of the national rollout in October.”

Labour criticism

But Labour said this showed the scheme was in crisis and that the information technology needed for it was not ready.

Liam Byrne MP, Labour’s Shadow Work and Pensions Secretary, said: “This is yet another embarrassing setback for Universal Credit.

“The scheme is already late and over-budget and in spite of earlier promises ministers have admitted that they have no idea when out of work claimants will move over to Universal Credit.

“The truth is the IT for Universal Credit appears to be nowhere near ready.

“This scheme is now on the edge of disaster. Ministers must admit this project is in crisis and start to fix it now – before millions of families tax credits are put at risk.”

Universal Credit calculations depend on salary data from HMRC’s new PAYE Real Time Information system.

Mr Bryne said obligations for small firms to provide PAYE data on or before each employee payment had recently been delayed from April until October.

The Bedroom Tax Song: You Cannae Have A Spare Room In A Pokey Cooncil Flat

March 28, 2013

This is brilliant! Number 1 on Itunes as soon as possible, I say. It’s your Thursday Treat, readers!

Government Threatens To Close Stanbridge Earls School

March 28, 2013

The government has threatened to close a private school following allegations of sexual abuse.

A tribunal raised safety concerns after examining the way the Stanbridge Earls School dealt with claims a girl had been raped twice by other pupils.

Ofsted has since visited, and the school has produced an action plan.

But the Department for Education (DfE) has rejected the plan and “set out the immediate action” to be taken by the school in Romsey, Hampshire.

A DfE spokesman said there would be a “final inspection” in May.

He added: “If rapid progress is not made the department will consider removing the school from the register of independent schools [which would mean closure].”

‘Progress made’

A spokesman for Stanbridge Earls, which caters to pupils aged 10 to 19 with special educational needs, said many of the DfE’s concerns had already been addressed and Ofsted recognised progress had been made.

“The DfE’s rejection of the plan in its current form does not seem to take account of all this activity,” he said.

Caroline Nokes, MP for Romsey and Southampton North, said “massive strides” had been made by the school but “more needs to be done”.

The January tribunal found the school had failed to protect the “vulnerable” pupil who made the rape allegations.

On Monday police announced a “comprehensive review” into alleged sex offences at the school and the way they were investigated.

#ifihadglass Man Submits Idea To Control Wheelchairs With Google Glass

March 27, 2013

Sincere thanks to sensitive software engineer Steve McHugh. He thinks like I do- about accessibility at every possible opportunity.

Two Disabled Adults Win Judicial Review Of #BedroomTax!

March 27, 2013

A very good update on this, readers!

Protestor Calls IDS A ‘Ratbag’

March 27, 2013

You must watch this video, readers!

Work and pensions secretary Iain Duncan Smith has been heckled by anti-cuts protesters during a speech in Edinburgh.

Mr Duncan Smith had just been called to speak when campaigner Willie Black rose to his feet and shouted “you’re a rat bag” at the politician.

Mr Black had booked himself into the George Hotel in Edinburgh the night before.

He told the BBC he had breakfast and then made his way to the conference room in the hotel in time for Mr Duncan Smith’s speech.

When the secretary of state rose to his feet Mr Black called out: “You are creating a new poll tax and we are going to see the end of you back to England, where you belong, you rat bag.”

Mr Duncan Smith replied: “It is always good to be welcomed.”

Mr Black was then escorted from the conference room and Mr Duncan Smith continued with his speech.

Then two disabled protesters stood up and shouted out.

They said: “We want social justice and equality … We’re coming for you.”

The two, and their guide dog, were then escorted from the room.

Outside Jonathan Smith and Charli Saben Fox explained why they had interrupted Mr Duncan Smith’s speech.

Mr Smith who receives income support, disability living allowance and housing benefit said: “If we don’t do it then we may as well just go out and shoot ourselves.

“A bullet in the head is probably easier, kinder to most of us than just letting us rot away.”

Charli Saben Fox, whose son has learning difficulties and is disabled herself, said: “If they take away everything from us we have nothing to lose.

“That means we have everything to fight for and that is what we are going to do.

“Iain Duncan Smith has got a fight on his hands if he thinks we are just going to lay down and die.”

Earlier, the BBC understands Mr Duncan Smith had held private meetings with the Scottish Liberal Democrat leader Willie Rennie and the Deputy First Minister of Scotland Nicola Sturgeon.

Mr Rennie’s party conference recently voted for a rethink on changes to housing benefit which will see people lose benefits if they are deemed to have spare bedrooms in their property.

Housing benefit

Ms Sturgeon’s government has called on the UK government to scrap what they call the “bedroom tax”.

Labour will use an emergency question at Holyrood to ask the Scottish government if they will bring in emergency legislation to stop local councils and housing associations evicting tenants if they run up arrears as a result of housing benefit changes.

But her housing minister Margaret Burgess ruled this out saying: “What we would have then is lots of tenants and people running up debts and landlords struggling to balance the books and their rent accounts.”

Ms Burgess said the cost of the housing benefit changes in Scotland could be £65m and that was money her government did not have available to compensate councils and social landlords.

She continued: “For us to do that would be asking to use Scottish government funding for devolved matters, money we would have to take from health, from education or from our police services to pay for a reserved matter.

“The bedroom tax lies squarely on the shoulders of the Westminster government and we will continue to fight them on this.”

First Minister Alex Salmond pledged no SNP council would evict tenants who ran into financial trouble as a result of the welfare changes.

In a BBC interview, Mr Duncan Smith defended his housing benefit reforms saying the current system was unfair.

He said: “It is unfair on taxpayers, it is unfair on those in over-crowded accommodation and it is unfair that one group of housing benefit tenants cannot have spare bedrooms and another group are subsidised.

“When is someone going to speak up for the over rowded and those who suffer on waiting lists waiting for their housing because of mis-management here in Scotland and across the United Kingdom.”

Mr Duncan Smith also added his policy was not cutting the welfare bill but slowing its growth to try to help reduce the deficit and get more people into work.

Ropits: Hitachi’s Self Driving Car

March 27, 2013

How exciting!

Details of my feelings on self driving cars here.

American Teen With Downs Syndrome Climbs Mount Everest

March 27, 2013

 

The Government Has A Duty To Assess The Impact Of Benefit Cuts

March 27, 2013

Says Claudia Wood of Demos in today’s Guardian:

This government has undertaken the most ambitious reform of the welfare state for more than 60 years. It has set out to reduce the benefits bill by £18bn a year by 2015, through top-slicing every benefit and tax credit. For groups relying on multiple benefits – such as disabled people – this means being exposed to several cuts simultaneously.

The government has a duty to assess the impact of these policies, and has produced dozens of individual “impact assessments”: analyses of how much each individual cut will save, the number of people affected and by how much. Some assessments also give breakdowns by gender and disability.

But when dozens of changes are under way they can be both inadequate and misleading. Since many people claim more than one benefit and tax credit at a time, but the current assessments only consider each cut in isolation, they give us an incomplete picture at best. At worst, they provide a false sense that the cuts are being fairly and evenly spread.

Demos has been tracking the impact of austerity on a number of disabled people supported by the charity Scope. Ahead of 1 April, when many of the cuts announced in the Welfare Reform Act 2012 come into force, we modelled a series of “cumulative impact assessments” across 15 disability benefit reforms.

We found that 3.7 million disabled people would experience some reduction in income, and by 2017 (when the government intends to shave a further £10bn off the benefits bill) they will have lost £28bn in benefits as a group. Of course, these losses aren’t evenly spread. We found that hundreds of thousands of disabled people would be subject to up to six cuts simultaneously.

At one end of the cumulative impact scale, 88,000 disabled people currently claiming employment support allowance (ESA) will feel a double whammy of a 1% cap on uprating and a 12-month eligibility limit. At the other end of the scale, at least 1,000 disabled people (possibly up to 5,000) will face six separate cuts to their benefits income. By the time the next round of cuts are due in four years, they will be £23,300 worse off per person.

In between these two groups are about 120,000 disabled people facing a triple cut, and 99,000 a quadruple cut. These combinations represent at the very least a loss of £6,309 per person by 2017. The worst loss of £23,461 per person by 2017 will be experienced by those unfortunate enough to lose their eligibility for disability living allowance and ESA, and who are reliant on other benefits that will only increase by 1% because of the rating cap or by the consumer prices index (CPI) instead of inflation.

Losses on this scale are life-changing. And yet they are underestimated, as they exclude many reforms we felt unable to model, such as changes to child benefit and tax credits and to housing benefit for disabled people renting in the private sector, due to a lack of publicly available data.

When disability groups asked the government to carry out cumulative assessments, they were told the analysis was too complex. True, not every change can be predicted and modelled, but our attempts suggest meaningful results can still be achieved with a little effort.

The Department for Work and Pensions could confirm that the impact of welfare reform is far from evenly or fairly spread. But this would add fuel to the fire for those who are already calling for a rethink on welfare reform: perhaps cumulative assessments aren’t too complex, but too controversial.

Cuts: ‘I Can’t Afford To Heat The Whole House’

March 27, 2013

Susan Donnelly dreads April’s welfare reforms, fearing they will leave her impoverished and in despair. Donnelly, 54, from east London, lives with her dog, Charlie, in a two-bedroom bungalow adapted for use by people with a disability. She has emphysema, asthma and is doubly incontinent.

She receives nearly £700 a month in income support and disability premium, plus £309 a month disability living allowance (DLA). From this she pays for the hire of a Motability car and makes a £57-a-week contribution to the care support package supplied by the local authority.

From next month however, her modest income will be squeezed even further. She will have to contribute £4 a week to council tax. Under the so-called bedroom tax she will lose £16 a week housing benefit for her second bedroom, in which she stores her drip stand, feeding tubes and wheelchair. New co-payments mean she will have to foot the £3-a-week bill for a network alarm, which alerts the authorities if she falls over at home, and £10 a week for incontinence pads.

She fears the prospect of being reassessed for DLA under reforms that kick in further down the line. If she were to lose that, she will lose her Motability car and much of her independence. Overall, she estimates that from April she will be left with about £120 a week for food, fuel bills and other basic living costs.

“I’m looking down a long dark tunnel with no light at the end. Unless they get rid of Cameron and revoke all of the cuts, I don’t think I’ll see this year out. I can’t afford to put my heating on. I don’t use my oven any more. I’m scared to run up any bills. By 7pm I’m huddled up in bed with my dog. I have a halogen heater in there which goes on at night – I can’t afford to heat the whole house.”

Cuts Will Cost Disabled Claimants £28BN Over 5 Years

March 27, 2013

Thousands of disabled people will be hit by up to six different welfare cuts, with the very worst off potentially losing up to £23,000 each over five years, research shows.

The effect of the changes, the bulk of which kick in after 1 April, will be to plunge tens of thousands of disabled people deeper into poverty, says a study that captures the multiple impacts of social security reforms for the first time.

The research, carried out for the Guardian, estimates that by 2017-18 about 3.7 million disabled people will collectively lose £28bn as a result of the reforms. Individuals will be hit by one of seven combinations of welfare cuts and small numbers could lose more than £20,000 each.

About 26,000 people will effectively no longer be counted as disabled in the eyes of the welfare system because the cuts will result in the removal of all benefits that identify them as having a disability, according to the study, carried out by thinktank Demos and the disability charity Scope.

Claudia Wood, deputy director of Demos, said households hit by multiple welfare cuts were more likely to get into debt, become reliant on charities for crisis help and face social isolation and mental illness.

The welfare reforms come as cash-strapped local authorities impose growing restrictions on social care services used by disabled people. Charities estimate that 105,000 disabled people will lose support by 2015 as eligibility thresholds for care tightens.

A Guardian survey of councils published this week showed that many councils will introduce charges or increase co-payments for care services from April.

Councils are also cutting other services relied upon by disabled people and their carers, including respite care, drop-in centres, public transport and advice centres.

By 2017-18 disabled claimants will be subject to a combination of cuts and restrictions to employment support allowance (ESA) and disability living allowance (DLA), the capping of rises to benefits and tax credits, and the abolition in many parts of the country of council tax benefit.

Those financial losses will be compounded for disabled claimants living in social housing, who from April will face potential reductions in housing benefit amounting to hundreds of pounds a year as a result of the so-called bedroom tax.

A separate study by the research firm CACI says residents of local authority areas in London and the north of England will face most pressure when the welfare cuts come into effect next week. Barking and Dagenham came top of the list with 61% falling into this category, followed by Tower Hamlets (58%) and Southwark (56%).

The Demos/Scope study, which uses official government data to analyse the of the effect of 13 separate welfare changes, estimates that:

• The biggest single group affected – comprising about 123,000 disabled people facing a combination of three benefit cuts – will see a reduction in income of up to £18,100 by 2017-18. A further 88,000 people subject to two cuts will lose £15,500.

• A group of up to 5,000 people will shoulder a combination of six benefit cuts simultaneously, seeing their income reduce by a total of £23,000 each over a five-year period, including a drastic £5,800 decrease in 2017-18 alone.

Richard Hawkes, the Scope chief executive, said: “In 2013 disabled people are already struggling to pay the bills. Living costs are spiralling. Income is flatlining. We know many are getting in debt, just to pay for essentials.

“What’s the government’s response? The same group of disabled people face not just one or two cuts to their support but in some cases three, four, five or even six cuts. In this context it’s a frightening prospect that welfare could be capped in the June spending review, having already been slashed by billions.”

Wood said the study’s findings were an underestimate because it could not factor in the additional impact of cuts to child benefit, tax credits and the social fund. It also does not measure the impact of cuts to universal local authority services used by disabled people.

The government, which aims to save £18bn a year from the total welfare bill by 2015, has published separate impact assessments for each of its reforms but has refused to analyse the cumulative impact.

Individuals who lose all disability benefits would be unable to access Motability cars, blue badge parking discs and equipment grants, Wood said. “Your disability won’t change. It’s just that a combination of someone deciding you aren’t disabled enough and have claimed for too long means you will lose your benefits.”

A previous Demos/Scope study, which tracked the impact of initial welfare changes in 2011-12 on six households with disabled members, found that income losses over the year ranged from £270 for a single disabled woman to £2,100 for a man cared for by his wife. But those losses will accelerate as the reforms starting in April unfold.

A Department for Work and Pensions spokesperson said: “Our reforms will make sure the billions we spend every year give more targeted support and better reflect today’s understanding of disability. Hundreds of thousands of disabled adults and children will actually receive more support than now with the combined effect of benefit changes under universal credit.

“We carry out thorough impact assessments on all our policies, as well as equality impact assessments on any policies that might have a disproportionate affect on disabled people.”

The CACI study identifies a group it calls “social adversity” who will be most badly hit by measures such as cuts to council services, reductions to benefits and the bedroom tax. While many councils had 10% or fewer residents in this category, a handful in London and the north had more than 50%.

Liam Smith, leader of Barking and Dagenham council, said the council was doing all it could to support the most vulnerable residents but faced “unprecedented demands”.

“Yet again people who are totally removed from normal life are trying to force people to live by the motto of eat or heat. I challenge these people to try to live [like our most vulnerable residents do] and see how far they get.”

Petition To Sack Richard Littlejohn

March 27, 2013

UK readers, you may have heard that there is a petition going around to sack Richard Littlejohn, that man who writes for that organisation that calls itself a newspaper. I prefer to refer to it as the Daily Fail.

Anyway, the reason for the petition has nothing to do with disability. I have signed it, though, because of the rubbish that Littlejohn has previously scribbled about disability issues.

I thought those of you who share my opinion of him might like to sign it as well.

 

Curious Incident Leads Olivier Nominations

March 26, 2013

The stage version of The Curious Incident Of The Dog In The Night-Time leads the pack for this year’s Olivier Awards with eight nominations.

The National Theatre production, now in the West End, is up for best new play, with Luke Treadaway up for best actor.

Helen Mirren is nominated for best actress for reprising her Oscar-winning role as Queen Elizabeth II in The Audience.

Winners will be announced at the Royal Opera House on 28 April.

The ceremony will be hosted by Hugh Bonneville and Sheridan Smith.

The Curious Incident of the Dog in the Night-Time, adapted by Simon Stephens, premiered at the National’s Cottesloe Theatre last year and transferred to London’s Apollo Theatre this month.

Treadaway plays 15-year-old Christopher Boone, a maths genius with Asperger’s syndrome, who sets out to solve the mystery of who killed his neighbour’s dog.

“I’m absolutely thrilled to have so many Olivier nominations for our show,” said the play’s director Marianne Elliott.

“What started out as an ‘experimental’ exploration of Mark Haddon’s wonderful novel, turned into a very fulfilling and creative experience for all of us.”

Elliott is shortlisted for best director, while Nicola Walker is up for best supporting actress. The play also features in the best lighting, sound, set design and choreographer categories.

Curious Incident is joined in the best new play category by Nick Payne’s multi-verse drama Constellations, Peter Morgan’s The Audience, and This House, James Graham’s political drama at the National Theatre.

Dame Helen is up for best actress alongside Hattie Morahan for A Doll’s House, Billie Piper for The Effect and Kristin Scott Thomas for Old Times. Dame Helen won the best actress Oscar in 2007 for her performance in the film The Queen, also written by Peter Morgan.

The best actor race sees Curious Incident’s Treadaway up against Rupert Everett’s Oscar Wilde in The Judas Kiss, James McAvoy’s Macbeth, Mark Rylance for Twelfth Night and Rafe Spall for Constellations.

Both Macbeth and Twelfth Night are up for best revival, along with with Long Day’s Journey Into Night and Old Times.

The nominations were announced by Olivier Award-winners Ruth Wilson and Elaine Paige on Tuesday at London’s May Fair Hotel, and broadcast live on BBC Radio 2’s Ken Bruce show.

“This year’s nominations show variety, strength and depth,” said Julian Bird, chief executive of the Society of London Theatre.

He said that the subsidised sector was strongly represented in plays from the National Theatre and the Royal Court, while commercial theatre had “shone through” with plays and musicals such as The Audience, Top Hat and The Bodyguard.

‘Long journey’

Top Hat, based on the 1935 film with Fred Astaire and Ginger Rogers, has seven nominations, including nods for original cast members Tom Chambers and Summer Strallen.

Producer Kenny Wax said: “A lot of the company have been with the show since June 2011, so it’s been a long journey and this is a testament to everybody’s hard work.”

Steven Sondheim’s blood-soaked musical Sweeney Todd, which transferred to the West End from Chichester Festival Theatre, was shortlisted six times.

Michael Ball and Imelda Staunton are up for best actor and best actress in a musical for their respective roles as the demonic barber and the pie-making Mrs Lovett.

Ball competes against Alex Bourne for Kiss Me, Kate, Chambers for Top Hat and Will Young for Cabaret. Staunton’s competition is Heather Headley for The Bodyguard, Hannah Waddingham for Kiss Me, Kate and Top Hat’s Strallen.

Sweeney Todd is also up for best musical revival with A Chorus Line, Cabaret and Kiss Me, Kate.

Mark Goucher, A Chorus Line’s producer, told the BBC: “It took 37 years to get A Chorus Line back to London – it’s a classic show with the original creatives in charge who I think have produced a first class revival.”

The best new musical contenders are Loserville, Soul Sister, The Bodyguard and Top Hat.

Billy Elliot The Musical, Matilda The Musical, The Phantom Of The Opera and Wicked are shortlisted for the BBC Radio 2 Audience Award – the only Olivier Award voted for by the public.

English National Opera Dance gets three out of four nominations for best new opera production – Billy Budd, Caligula and La Traviata are up against the Barbican Theatre’s Einstein on the Beach.

Nominations for best new dance production and outstanding achievement in dance are all split between The Royal Ballet and Sadler’s Wells.

Gillian Lynne, whose choreography credits include more than 50 shows including Cats and The Phantom of The Opera, and playwright and novelist Michael Frayn are to be honoured with awards for outstanding contributions to theatre.

The full list of nominations is available on the Olivier Awards website.

The 28 April ceremony will be live on BBC Radio 2 from 18.30 GMT and a television highlights package will also be broadcast on ITV later in the evening.

At last year’s awards, Matilda the Musical set a new record by winning a total of seven trophies.

Schools Push For Disabled Sports Leaders

March 26, 2013

After the success of the Paralympics last summer, more is being done to make sure young people are taking part in sport.

The Youth Sport Trust is encouraging young people with disabilities to become sports leaders in schools.

Adil Ghani is a disabled sport leader at his school in Kent, and this is his story.

The Human Cost Of Daycare Centres

March 26, 2013

For the past four years David Hills has got up at 8am and, after breakfast with his mum and dad, either got the bus or walked across Peterborough to the Goldhay arts centre.

Since he started at the drop-in centre in 2008 the 26-year-old has made friends, pursued his passion for music and met a girlfriend.

Five years ago, his life was very different. Hills, who lives with his parents, spent all day in bed, struggled with food and was regularly overwhelmed by depression. At one point he started self-harming.

“Goldhay has transformed me,” he says quietly. “I go every day in the week and it is great.”

But like thousands of people with learning difficulties around the country, Hills now faces losing his daycare support as his local council strives to make ends meet, withdrawing care services for those categorised as having “moderate”, as opposed to “substantial” or “critical” needs.

In Peterborough the council says the decision, taken amid angry protests at a late-night council meeting earlier this month, will save £350,000 next year and £500,000 in future years.

But Amanda Preston, from the Peterborough Council for Voluntary Services, said the plan was putting the wellbeing of vulnerable people in the city in jeopardy.

“I don’t think councillors realise how much people like David rely on the care they receive and what a devastating impact it could have on them if it is withdrawn.

“I am really worried that by trying to make savings now we are pushing vulnerable people towards a crisis point, when any savings made now will be eaten up by the care and support they will need then.”

Peterborough is one of eight councils that have decided over recent months to scrap care for those deemed to have moderate care needs. Two more are considering similar restrictions. These councils are joining the vast majority who have already scrapped low and moderate care bands and instead provide support only for those deemed to have substantial or critical needs. After 1 April only a handful will still offer direct support to people like Hills. It amounts to a guillotining of the support provided by the state to vulnerable people across the country.

On average the councils that responded to the Guardian survey will this year protect adult and children services from the brunt of the cuts – but that is against a backdrop of rising demand for help and the introduction of means testing to make up the shortfall.

Nationally, social care campaigners estimate that at least 105,000 disabled people of working age will be without vital care and support by 2015 if the bar for those who are eligible continues to be raised.

According to a consortium of disability charities, many people currently receiving council help with everyday tasks such as washing, eating and communicating will be “left to fend for themselves”.

“Disabled people want to live independently. But the support they need to get up, get dressed and get out and about is being squeezed due to chronic underfunding of social care,” said Richard Hawkes, chief executive of the disability charity Scope.

Adult social care accounts for about 40-50% of council spending, and as spending cuts deepen, it is becoming increasingly difficult to maintain levels of service as demand for care rises.

Many councils have increased charges for some care services – the Guardian survey of council cuts found 23 of the 42 councils that answered the question have introduced new charges or raised existing payments for some adult care services.

The outlook for users like Hills is compounded by cuts to other council services they rely on, such as transport, leisure and libraries. “We need to be really worried about the enormous gap between needs and resources in social care,” said David Rogers, the chair of the Local Government Association’s community wellbeing board.

The government is currently consulting on changes to social care that are likely to see a uniform national threshold of care set at “substantial” needs by 2015. But some councils warn that without reform of social care funding they will soon be forced to restrict services to critical only – with potentially devastating effects.

In Peterborough it is estimated 300 people are currently classed as “high moderate”, and the council say all will be reassessed before their care is withdrawn in case they qualify for other care packages.

It says the cuts are needed because funds from central government have been cut by £15m over the past two years, with a further reduction of £25m expected by 2015.

Terry Rich, executive director for adult social care, said: “We believe that with the development of re-ablement and a greater focus on providing advice and guidance to people with moderate levels of need, these changes can be brought in without leaving people unsupported.”

Peterborough says it hopes “preventive services” run by charities and community groups – including “developing locally based champions” and “user led organisations and support” – will step into the breach.

But the local voluntary sector is not convinced that the big society has the capacity to step in to support those people who lose care support.

In her second-floor office, Preston is unimpressed. “It is completely unrealistic, particularly as the voluntary sector is facing funding cuts and funding freezes from the city council and many have no capacity to cope with the extra demand.”

Hills, who is on his way to a jamming session with friends after the interview, says he is worried about the future for the first time in years.

“I don’t want to go back to where I was. If they take it away I know I will be depressed again. I won’t be able to function properly. I won’t eat properly.”

Open Letter To Keir Starmer QC Regarding Jordan Sheard Sentence

March 26, 2013

Matthew Smith has written this open letter to Keir Starmer QC regarding the sentence handed down to Jordan Sheard for the killing of Steven Simpson.

 

If you would like to join us both in signing the letter, you can do so here.

Open letter

 

to the Director of Public Prosecutions, Keir Starmer QC

 

Dear Mr Starmer,

 

We are writing to express our concern regarding the lenient sentence given to Jordan Sheard for his role in the death of Steven Simpson, who died of burns after being set on fire by Sheard and others at his 18th birthday party last June. News reports state that Simpson had held a birthday party but had to search for people to attend; those who did made him strip to his underwear, scrawled homophobic slogans on his body, then doused him with tanning oil before Sheard, egged on by other partygoers to “light it, see what it does”, set light to his groin area, causing him to catch fire, and after a brief attempt to help, fled the scene.

 

We are concerned that reports say that Simpson appeared to have been enjoying the situation. He had Asperger’s syndrome, a speech impairment and epilepsy. In previous reports of deaths of people with learning disabilities at the hands of groups of bullies who masqueraded as friends, it was reported that the victims invited the perpetrators into their homes and did not extricate themselves from the abusive situation because they preferred their tormentors’ company to nobody’s. Most gay men would not want people using the slogans quoted near them, let alone writing them on their bodies; people with Asperger’s syndrome often find close physical contact difficult. Yet we are expected to believe he was ‘enjoying’ this attention.

 

We urge you to appeal this sentence as it seems unduly lenient for a death incurred during what may have been a malicious attack, disguised as friendly ‘horseplay’, and one which has sexual overtones. It is a mystery that he was not charged with murder, since pouring what one believes to be an accelerant over somebody’s almost-naked body and then igniting it is known to cause burns, and this surely qualifies as occasioning grievous bodily harm with intent, and doing this and causing someone’s death is murder, even if murder is not intended. Setting light to someone’s groin area also surely qualifies as an indecent assault. A sentence of three and a half years (likely to mean less than two) is derisory for the crime of causing a vulnerable man what must have been a very painful death, and gives the impression that such people’s lives are worth little. We urge that it be appealed and that a sentence of at least double the original sentence be sought.

 

 

Investigation Launched After Special School Gave Pupil Razor Blades For ‘Safe Self Harming’

March 25, 2013

Teachers were ordered to hand razor blades to a vulnerable youngster as part of a controversial ‘controlled self-harm’ policy at a specialist school, it has emerged.

An investigation is underway after a child at Unsted Park School – which offers education to boys and girls aged between seven and 19 years who have Asperger’s Syndrome and higher-functioning autism – was given access to blade kits.

Staff were told to give the pupil access to the sterilised disposable razor and sterile wipes and escort the child to a bathroom where they would be allowed to self-harm in a ‘safe and controlled manner’.

The school’s principal and headteacher now face the possibility of being hauled before a Teaching Agency hearing

Teachers were ordered to wait outside the bathroom while the child was inside, checking on them every two minutes, before the wounds were dressed and cleaned by staff.

The policy was introduced and abandoned within six days at the school in Munstead Park, Godalming, Surrey, and is understood to have sparked protests from staff.

Principal Steve Dempsey and headteacher Laura Blair now face the possibility of being hauled before a Teaching Agency hearing over allegations of unacceptable professional conduct in connection with the policy.

Members of school staff are understood to have raised fears with Surrey County Council’s Local Authority Designated Officer over the procedure.

Following the Teaching Agency investigation, a panel from the regulator will decide whether any further action will be taken.

The regulator could decide to refer the case to a professional conduct panel.

A spokesman for the Priory Group, responsible for running the school, said: ‘We are always willing to review cases with the Teaching Agency.

‘This was a short-term, local procedure introduced by the headteacher and school principal who genuinely believed it was in the best interests of the pupil.

‘However, they accept that the procedure should not have been implemented without further approvals having been obtained from key stakeholders and senior management prior to its introduction.’

It is believed the pupil’s parents were aware of the policy.

Unsted School was ranked good with outstanding features in its last Ofsted inspection, published in February.

The report stated: ‘There are robust risk assessments and health and safety processes which protect young people from harm.

‘The behaviour management system at the school is outstanding. Boarders have individual behaviour plans which operate on a traffic light system and clearly identify triggers and strategies for addressing these.

‘They also include work with the boarders on them developing the skills to control their own behaviour.’

A spokesman for the Teaching Agency said they were unable to comment on ongoing investigations.

A Surrey Police spokesman said the force was made aware of the policy in January 2012 by Social Services.

The spokesman said: ‘A senior strategy meeting, which was attended by Surrey Police, was held on January 19, 2012, to ensure that safeguarding practices were put in place. This was done to ensure that the practice did not continue at the school and was not put into practice at any other school.

‘Surrey Police has thoroughly reviewed the matter and is satisfied that there are no criminal offences to investigate.’

 

A Special Kind Of Mum

March 25, 2013

This will be on BBC Three tomorrow at 9pm:

What is life like if you are young, disabled and a mum? This film follows the trials and tribulations of two women who struggle to overcome their physical challenges and the prejudices they face on a daily basis.

At the age of 25, Trish is determined to be a ‘super-mum’ to prove the critics wrong. She was born with a condition that means she is confined to a wheelchair and cannot really use her arms or legs – as a consequence she has to perform everyday tasks with her mouth. For her this means preparing breakfast for her children, getting them dressed and even changing a nappy with her mouth. If life wasn’t busy enough, she is now pregnant with her third child and is planning a home-birth against doctor’s advice.

Michelle is 26-year-old single mum who was born with dwarfism and her energetic two-year-old Treziah is growing fast. She must learn to cope with being a mum to someone who is almost the same size and will soon be bigger than her.

Autistic, Gay Teen Steven Simpson Set Alight And Killed At 18th Birthday Party

March 25, 2013

I’m shocked. No words.

An autistic teenager died after being covered in self-tanning oil and set alight during drunken ‘horseplay’ at his 18th birthday party, a court heard.

Steven Simpson, who suffered from Asperger’s syndrome, a speech impairment and epilepsy, died from horrific burns the next day.

The court heard that as Mr Simpson became increasingly drunk at his party, he was dared to strip to his boxer shorts.

Defendant Jordan Sheard, 20, who had gatecrashed the house party, was seen taunting the host, who was openly gay, and then scrawling obscene and homophobic insults on his bare stomach, face and forearm.

Sarah Wright, prosecuting, said ‘it was described as good-natured fun’ but in reality was ‘cruel behaviour’ to someone who was ‘vulnerable and an easy target’.

After 2am, a partygoer took the Calypso tanning oil from Mr Simpson’s bedroom and, as it was poured over him, others chanted: ‘Light it, light it.’

Miss Wright said: ‘Steven did not object; he seemed to be enjoying the situation.’

But the court heard that Sheard then held a cigarette lighter to Mr Simpson’s groin, and instantly the highly flammable liquid caught alight and flames engulfed his body.

Instead of putting out the fire, Sheard ran away.

The court was told that neighbour Sean Banner was the only person who helped Mr Simpson, and burned himself extinguishing the flames.

Mr Simpson died in hospital from 60 per cent burns the next day.

Sheard, who initially tried to blame the college student for setting himself alight, eventually admitted  manslaughter and was jailed for three and a half years at Sheffield Crown Court yesterday.

Passing sentence, Judge Roger Keen told Sheard that the evening had involved ‘good-natured horseplay’ but that putting a flame to a man doused in flammable fluid was ‘a highly dangerous act’.

He also regarded the decision to run away as ‘serious aggravation’ in setting the jail term.

Miss Wright said Sheard only vaguely knew Mr Simpson but was allowed into the party in Barnsley, Yorkshire, last June with two friends anyway.

She said that despite Mr Simpson’s learning difficulties, he was sociable and had lots of friends.

Andrew Smith, defending, said the incident was a ‘criminally stupid prank that went wrong in a bad way’.

He added that the defendant had been ‘deeply and significantly affected by what he has done and the tragic consequences that ensued from it’.

Shifting Perspectives

March 25, 2013

Thanks to Society Guardian:

  • A new photography exhibition, Shifting Perspectives , which aims to shatter stereotypes of people with Down’s syndrome. The exhibition is at the South Bank in London until Sunday 31 March. Read more on Saba Salman’s Social Issue blog.

DitzAbled Princess: A New Disability Comic Strip

March 25, 2013

Something new and a little special for those of you who like comic strips.

Free respite holidays for disabled people and their families, from Channel 4’s Secret Millions charity

March 25, 2013

A press release from the Papworth Trust:

 

Charity Papworth Trust is offering free respite holidays to disabled people and their families thanks to £2 million of Lottery cash.

Typical respite is where the disabled person goes away while their family stays at home. The Trust’s respite holidays are unique because they offer a chance for the whole family to together have a supported break, without the pressures of everyday life.

Papworth Trust ran a pilot for this new service, shown on Channel 4’s The Secret Millions. 19-year-old Luke from Peterborough took part in the filming with his parents Chris and Jane. Luke has Down’s Syndrome and was quite shy at first. Since the respite holiday he has become much more independent, taking part in local amateur dramatics and setting his sights on a role in EastEnders one day.

Dad Chris saw some real changes from the respite holiday. He said: “I thought Luke was going to struggle but he just took to everything. He amazed me. I think it proved to us that Luke can do things that we didn’t think he could, and perhaps sometimes we were holding him back slightly. We can now let him go that little bit more.”

Mum Jane said: “It was such a benefit having more quality time together – normally Luke just has respite on his own. It’s really brought the family close together. Anybody that gets the opportunity will have a fantastic time.”
Adrian Bagg, Papworth Trust’s Chief Executive, said: “At Papworth Trust we understand the impact disability can have. It can be hard to have quality, stress free time together as a family.

 

“Disabled people and their families will now be able to apply for free respite holidays thanks to the Big Lottery Fund. The pilot shown in The Secret Millions was an amazing experience for the families involved. It is fantastic that Papworth Trust will now be able to offer that farm experience to disabled people of any age, wherever they come from in the UK.

 

“We’re going to renovate a 16th century farmhouse in a beautiful part of Wales and start welcoming families from late summer this year. Please go to www.papworth.org.uk/kerryfarm to find out more.”

Downs Syndrome Linked To Brain Protein Loss In US Study

March 25, 2013

A lack of a protein in Down’s syndrome brains could be the cause of learning and memory problems, says a US study.

Writing in Nature Medicine, Californian researchers found that the extra copy of chromosome 21 in people with the condition triggered the protein loss.

Their study found restoring the protein in Down’s syndrome mice improved cognitive function and behaviour.

The Down’s Syndrome Association said the study was interesting but the causes of Down’s were very complex.

Prof Huaxi Xu, senior author of the study from the Sanford-Burnham Medical Research Institute, said that in experiments on mice they discovered that the SNX27 protein was important for brain function and memory formation.

Mice with less SNX27 had fewer active glutamate receptors and therefore had impaired learning and memory.

The SNX27-deficient mice shared some characteristics with Down’s syndrome, so the researchers looked at human brains with the condition.

This confirmed their findings in the lab – that people with Down’s syndrome also have significantly lower levels of SNX27.

“So, in Down’s syndrome, we believe lack of SNX27 is at least partly to blame for developmental and cognitive defects,” Prof Xu said.

In the lab, the research team increased the levels of the protein in mice brains to see if the problem could be resolved.

“Everything goes back to normal after SNX27 treatment,” said Xin Wang, a graduate member of the research team.

“First we see the glutamate receptors come back, then memory deficit is repaired in our Down’s syndrome mice.”

But Prof Xu cautioned that science still had work to do to develop a safe technique of delivering genes into the human brain.

Ethical concerns

The researchers are now screening small molecules to look for those that might increase SNX27 production or function in the brain.

Carol Boys, chief executive of the Down’s Syndrome Association, said they were following the development of many biomedical research studies into Down’s syndrome with interest.

“This particular study is of interest; however, the genetic causes of Down’s syndrome are very complex and we are still a long way away from the development of therapeutic treatments that might lead to improvement to cognition in people with Down’s syndrome.”

She also said they were mindful of the ethical issues that such treatments might raise for people with Down’s syndrome and their families.

The Dwarfs Of Auschwitz: The Book

March 24, 2013

From yesterday’s Guardian:

I was saved by the grace of the devil,” Holocaust survivor Perla Ovitz told us. Again and again, she recounted in detail how she and her family were taken to the gas chamber and ordered to strip naked. A heavy door opened and they were pushed inside. “It was almost dark and we stood in what looked like a large washing room, waiting for something to happen. We looked up to the ceiling to see why the water was not coming. Suddenly we smelled gas. We gasped heavily, some of us fainting on the floor. With our last breath we cried out. Minutes passed, or maybe just seconds, then we heard an angry voice from outside – ‘Where is my dwarf family?’ The door opened, and we saw Dr Mengele standing there. He ordered us to be carried out and had cold water poured on us to revive us.”

The Ovitz family, from the village of Rozavlea in Transylvania, was the largest recorded family of dwarves: a dwarf father who sired 10 children, seven of them dwarves. Perla, born in 1921, was the youngest. In that remote part of Romania in the early 20th century, it was difficult for anyone to eke a living from the land and livestock, and impossible for someone standing less than 3ft tall.

Their mother, anxious for her children’s future, guided them towards a common skill, a profession in which they could together make a living and would be neither isolated nor ostracised. As the five sisters and two brothers were all good-looking and musically gifted, the stage seemed the perfect choice: for where else could they be applauded, courted, honoured?

Throughout history, dwarves had been entertainers, often part of a circus or vaudeville show. But the Ovitzs wanted the stage all to themselves. They appropriately named their musical ensemble the Lilliput Troupe, and for 15 years had a flourishing career in central Europe. Their two-hour show consisted of popular hits of the day, skits and music. Perla had a tiny, four-string pink guitar that looked like a toy, her sisters Rozika and Franziska played on quarter-sized violins, Frieda struck on the cimbalom, Micki played both a half-sized cello and accordion, while the energetic Elizabeth took on the drums. Their elder brother Avram was the scriptwriter, actor and general manager.

The Ovitzs lived a communal life in one big house in the village. When any one of them got married, the spouse moved in and joined the enterprise. While the dwarves basked in the limelight, the average-height family members worked behind the curtains as stagehands and wardrobe mistresses. It was the only all-dwarf ensemble with a full show of their own in the history of entertainment.

When the Nazis came to power, the Ovitzs were doubly doomed: under the Aktion T-4 euthanasia programme, the Germans set out to kill people who were physically or mentally disabled, whose lives were considered “unworthy of living”, “a burden on society”; and, as Jews, the Ovitzs were the target of the Final Solution.

On 19 May 1944, they were brought to the Auschwitz-Birkenau death camp because they were Jews. But, by a twist of fate, their disability played for them. It was rare that one person from an entire family survived the camp, let alone two, but all 12 members of the Ovitz family – the youngest a baby boy just 18 months old, the oldest his 58-year-old dwarf aunt – emerged alive.

Listening to the unimaginable horrors of Holocaust survivors, you shrink, stunned. But historians are reserved about oral testimonies. The witness may get the timeline wrong, forget facts or infuse memories of others into his or her own. Close to the event, the witness often finds it difficult to convey details of the trauma they endured. Crucial events can be forgotten, and trivial ones take centre stage. Consciously or unconsciously, shame and guilt can obliterate vital facts.

We embarked on the trail of the seven dwarves of Auschwitz with the notion that we would subject their story to the same rigorous examination that would be applied to any other historical source. So we not only collected their testimonies, but crosschecked them with those of dozens of other survivors, inmates and doctors, either first-hand or in archives and libraries. We unearthed medical documents in Poland and Germany. Still, we followed the advice of Professor Yehuda Bauer, a Holocaust historian and himself a survivor, that “one must never argue with a survivor”.

Descending the ramp at Auschwitz-Birkenau, the seven dwarves and their five average-height family members were immediately separated from the others in the transport. They were told to wait for the arrival of Mengele. In rotation with other physicians, he was sending the multitudes to their immediate death, and selecting the few fit enough for slave labour. He was also using his long shifts on the ramp to pluck out twins, as well as hunchbacks, hermaphrodites, giants, dwarves, obese men and corpulent women – in general, anyone suffering from a growth disorder.

On the night the Ovitzs arrived, Mengele was asleep in his room at the nearby SS headquarters. All the troopers on duty at the ramp, however, knew well of his passion, of his collector’s mentality. To gain favour with the freak-hunter, they were always on the lookout for new specimens to enrich his “human circus”. While a lone dwarf did not provide reason enough to knock on Mengele’s door in the middle of the night, seven dwarves, along with their tall siblings, seemed good cause for disturbance.

While the SS were brutal towards the newly arrived, they were cheerful with the dwarves. Realising this, two families from the Ovitzs’ village approached and told the officer they were related. The Ovitzs kept silent and did not prove them wrong. Now they were 22. Mengele hurried out to see his new acquisitions. He was delighted: “I now have work for 20 years,” he exclaimed.

A black army truck took them to a building at the edge of the camp. They were pushed in, stripped naked and smelled the fumes. The event indelibly etched the imminence of death not only on Perla’s memory; three other members of the group, whom we interviewed, as well as Elizabeth, Perla’s sister, who wrote her memoir, all attested that they were beginning to be gassed and would have died if Mengele had not suddenly reappeared.

Though we had five first-hand eyewitness accounts, we wanted to verify the story. The only way to do so was to study the procedures and manuals of operating a gas chamber. These were designed to kill between 500 and 2,000 people at once, depending on the size of the hall. Cyclone B was effective only at a room temperature of 27C, which was achieved by cramping a mass of people together. Gas chambers were simply not operated for merely 22 people; small groups were shot.

Furthermore, according to the camp’s rigid safety orders, SS personnel had to wear gas masks when operating Cyclone B. Although the victims died within 15 minutes, the SS men routinely waited half an hour before turning on the powerful fans that dispersed the gas from the chamber. Only then were the doors opened. The operators themselves did not enter; instead, Jewish inmates from the Sonderkommando were sent in to drag out the bodies for cremation. Once the extermination process had begun, it could not be halted, because by then it would have been impossible to open the doors.

What actually happened was that the Ovitzs and their neighbours were taken to the camp sauna for disinfection, where the water poured over heated stones produced much steam and fumes, as well as temperatures intense enough to cause someone to faint. The sauna had a particularly traumatic effect on both small children and fragile dwarves that might easily have created the impression of being gassed.

And what about the appearance of Mengele at the door? They regarded him as their saviour, and there were several later incidents in the camp when he indeed rescued them from imminent death at the hand of one of his rival doctors. So, for the Ovitzs, every narrow escape that they had in the camp was thanks to him.

Mengele had several hundred twins at his disposal, and he carried out notoriously cruel experiments on them that led to countless deaths. But he had only one family of dwarves, so he was careful not to put his precious guinea pigs at risk. He gave them special living quarters and their food portions were larger. Their hair was not shorn, because he needed it for his experiments. They were allowed to wear their own clothes, because prisoners’ uniforms did not fit their bodies. Former inmates told us that they thought they were hallucinating when they saw a colonnade of seven dwarves dressed warmly and elegantly, as if for a Shabbat stroll.

In the research on twins, Mengele was the field worker for his mentor, Professor Otmar von Verschuer, in Berlin. But he was looking for a research niche of his own and he found it in dwarfism. Mengele was aiming not only to discover the biological and pathological causes of the birth of dwarves, but to demonstrate the racial theory that in the course of its long history, the Jewish race had degenerated into a people of dwarves and cripples.

Members of the Ovitz group described to us in detail the painful blood-taking that they underwent. Often they fainted and water was poured over them to revive them, only for siphoning their blood to resume. Medical science of the time was obsessed with blood and its constituents, and it was generally believed that plasma contained all genetic traits. But only the medical records, all bearing Mengele’s flamboyant signature, clarified what he was looking for: signs of kidney problems, liver function, typhus and syphilis.

Written accounts of inmate doctors shed further light on the endless anthropological measurements and comparisons between the Ovitzs and their neighbours, whom Mengele mistook for family. The doctors extracted bone marrow, pulled out healthy teeth, plucked hair and eyelashes, and carried out psychological and gynaecological tests on them all.

The four married female dwarves were subjected to close gynaecological scrutiny. The teenage girls in the group were terrified by the next phase in the experiment: that Mengele would couple them with the dwarf men and turn their wombs into laboratories, to see what offspring would result. Mengele was known to have done it to other experimental subjects.

Inmates in Auschwitz-Birkenau tried to improve their lot with whatever talents they had. A barber would hope to shave a kapo (prisoner supervisor) for a piece of bread or two cigarettes; a seamstress might mend the block elder’s clothing; a painter would get a piece of sausage for making portraits for the SS guards; and one champion chess player was kept alive to play with Mengele.

Professor Israel Gutman, an Auschwitz survivor and prominent historian, recalls that “feasts and saturnalias were celebrated at kapos’ and block elders’ quarters. The artistic programme consisted of obscenities and dirty jokes. Sometimes a prisoner with a sweet voice would sing prewar hits in various languages. The kapos especially favoured melancholy tunes. The famous stars were very popular among the kapos and enjoyed a special income, thanks to their art.”

However, Perla Ovitz insisted that she and her family never took part in the “nightlife” of the death camp: they never performed in these drunken revelries, never sang in public nor entertained parties of kapos and SS men. She did remember one event. Sunday 30 July 1944 was the fast of Tishah Be’av, commemorating the destruction of the Holy Temple in Jerusalem. Being familiar with the Jewish calendar, Mengele perversely ordered the leader of the women’s orchestra to prepare a special concert to desecrate the holy day. Perla remembered that the programme consisted of romantic, melancholy German songs that moved her and her sisters to tears as they watched the performance from their tiny stools in the audience.

Yet in her autobiography, Playing For Time, singer Fania Fénelon remembers it entirely differently: “We start with a foxtrot, Mengele waving his hand, the dwarves filling the stage, some couples dancing, other participants only managing a kind of grotesque, depressing twist. The men bow with a touch of servility; the women follow. Their jewellery, silk, ornaments glitter in the sun, igniting thousands of sparkles, dancing, swinging, intermingling. These creatures emit joyful sounds, trying to sing along with Clara, Lotte and me. They have high shrieking voices. The orchestra plays a march and they accompany with clapping and stamping.”

Against the bleak backdrop of the death camp, the concert was so vivid that it became deeply etched in the memory of the survivors whom we interviewed. Isaac Taub was part of a group of twin boys enlisted to carry chairs and benches and arrange them in rows. The teenagers were allowed to stand at the back during the performance and Taub clearly remembered the Ovitzs on stage. “We all knew that the dwarves were performing for the Nazis.”

Yet Perla denied that they ever took part. As pious, God-fearing Jews, the Ovitzs deemed performance in Auschwitz to be an abomination, like singing and dancing in a graveyard. Nor would performance under coercion have lessened their shame – not with a painful awareness that while they were entertaining Nazis, the chimneys never stopped smoking. No wonder they strove to erase their experience from their history, and their minds.

Death was the master of Auschwitz and its toll was piled outside for all to see, like so much garbage waiting to be collected. A space suddenly empty in a bunk did not shake heaven and Earth. Those who survived the night walked about as if wrapped in an invisible shell, praying to live one more day. But the Lilliput Troupe drew the inmates beyond their shells, to care about them and their whereabouts. Subsequently, many survivors referred to the fate of the dwarves in their own memoirs.

In her autobiography, Auschwitz: True Tales From A Grotesque Land, Sarah Nomberg-Przytyk describes in appalling detail the horrible death of two members of the Ovitz group, one of them an 18-month-old baby boy who died as a result of one of Mengele’s experiments: “Around him, like pillars of stone, stood a large woman, along with the child’s mother, slim and frail; the three midgets sat in miniature chairs.” In the evening, the dead toddler was placed outside the block with the other corpses to be taken to the crematorium. Nomberg-Przytyk also recounts the death of Avram Ovitz, the leader of the group: “The old midget wanted his wife” and tried to slip through the barbed wire; a guard spotted him and, when Avram got close enough, shot him. “He never made it to his wife.”

But the little boy and his uncle Avram were not killed, and lived to see liberation day. What, then, caused Nomberg-Przytyk to make such grave mistakes? Most likely she was compressing a number of events, and attributed to the dwarves two common occurrences in the daily life of the camp: the death of a child in his mother’s arms and the shooting of an inmate who approached the electrified fence.

And there were others, such as Renee Firestone, who described the death of the Ovitz dwarves: “The Germans found a community of midgets, transported them to Auschwitz, shot them en masse and then were forced to let them sit in a pile for three days until the crematoria could take them.”

One plausible explanation for the discrepancy between fact and remembrance is that the survivors, who regarded their own deliverance as miraculous, found the chances slim that someone as helpless as a dwarf could escape death. The fact that the Ovitzs were transferred several times from one side of the camp to the other caused their fellow inmates to lose touch with them, and in Auschwitz, when you stopped seeing someone, it could mean only one thing.

The seven dwarves, as well as their entourage, all survived the war, and emigrated to Israel in May 1949. Three months later, the Lilliput Troupe was back on stage. In 1955 they made their last bow, but dwarfism did not affect their life expectancy. The first-born, Rozika, reached the age of 98 and her sister Franziska died aged 91. Perla Ovitz died in September 2001.

• Giants: The Seven Dwarfs Of Auschwitz, by Yehuda Koren and Eilat Negev, is published by the Robson Press at £16.99.

The Secret Millions: Series 1, Episode 4

March 23, 2013

This will be on Channel 4 tomorrow at 8pm:

Jimmy Doherty helps test a radical new way of helping young disabled people and their families. The idea of the project is to use a stay on a farm, to not only give them a break but also tackle issues in the family.

Jimmy’s own farm is open to the public, and he’s seen first-hand the powerful effect it can have on people.

Together with the Papworth Trust, a charity that helps support disabled people and their families, he plans to use Jimmy’s Farm to test a new way of giving families with disabled children a break.

Jimmy volunteers at one of the Papworth Trust Youth Clubs, which has activities for disabled children, enabling parents to have a few hours to themselves.

While he’s there, he looks for families who might benefit from a stay on the farm.

But what no one else knows is that there’s plenty at stake. If Jimmy and the people he meets can prove the trial works, it could help convince The Big Lottery Fund to give £2 million to make the idea a reality.

As the project develops, Jimmy begins to look at disability in a totally different way. But have they done enough to secure the funding?

A Day In The Life Of A Voluntary Respite Carer

March 22, 2013

This might be interesting or useful for some of you.

No Room For The Disabled In The ‘Aspiration Nation’ #Budget2013

March 21, 2013

The lovely people at Ekklesia have done what I didn’t do yesterday- looked in detail at what the budget means for us.

Did The Iraq War Cause Birth Defects?

March 21, 2013

Doctors at the Basra maternity hospital in southern Iraq have told the BBC that they have seen a 60% rise in birth defects since 2003.

Dr Muhsin Sabbak from the hospital is convinced that the rise in defects, such as spina bifida, is because of munitions from the Iraq war.

The BBC’s Yalda Hakim has been investigating.

“Experts By Experience”

March 21, 2013

This looks interesting. I think a lot of disability charities and organisations should read this and try to do something similar!

Autism May Be Linked To Grandparents Finds Study

March 21, 2013

The risk of developing autism may be passed on through – and not just to – future generations, researchers say.

The international study of almost 6,000 people suggests older fathers are more likely to have grandchildren with autism than their younger counterparts.

The mechanism is unclear but it is thought they may transmit “silent mutations” to their grandchildren.

But experts have urged caution, stressing autism is the result of many different factors.

The study, looking at people with the condition, is published in the journal Jama Psychiatry.

According to the National Autistic Society, more than one in every 100 people in the UK have the condition.

Previous studies suggested older fathers may be at greater risk of having children with autism than younger dads.

But the team of UK, Swedish and Australian researchers say this is one of the first pieces of evidence to show the risk can be passed on through – rather than just straight to – future generations.

The “silent mutations” – changes in genetic material – are likely to have no obvious impact on older fathers’ own children, but they may build up through subsequent generations, or interact with other genes and environmental factors, to increase the chance of their grandchildren developing the condition, the researchers say.

Using national databases from Sweden they studied almost 6,000 people diagnosed with the condition and more than 30,000 without, tracking their parents’ and grandparents’ ages.

They found men who had a daughter when aged 50 or older were 1.79 times more likely to have a grandchild with autism, compared to men who fathered children when aged between 20-24.

And those who had a son when 50 years of age or older were 1.67 times more likely to have a grandchild with the condition.

‘Complex causes’

But they say this study should not discourage older people from having children as though the risk is increased, it still remains small.

Co-author of the study, Dr Avi Reichenberg from King’s College Institute of Psychiatry, told the BBC: “It is about choices. If you choose to have a child at an old age there might be consequences. This is something everyone should consider.

“Unfortunately we can’t put exact figures on this risk yet. But most children born with older fathers and grandfathers grow up fine.

“And as scientists this type of information helps open doors to understanding more about the condition.”

Caroline Hattersley, of The National Autistic Society, said: “While this research is useful in aiding our understanding of autism’s complex causes, it should be treated with caution.

“Autism is thought to be the result of many different underlying physical and genetic factors.

“The study is not definitive, as we know that many people who had children at a young age also have grandchildren with the condition. We therefore urge parents and those thinking of starting a family not to be concerned about the findings.”

Dr Terry Brugha, professor of psychiatry at the University of Leicester who was not involved in the study, said: “This is a solid piece of work and the findings are plausible. But as a grandparent or parent-to-be this is not something to be overly concerned about.

“We are at the early stages of research and this study gives us a slightly deeper understanding of what is going on in the background.”

US Senate: Allow Equal Marriage For Disabled People!

March 21, 2013

I’ve just signed this petition because the rule really surprised me. Please do the same if you agree.

An Open Letter To Mark Serwotka From A Disabled Person

March 21, 2013

Cross posted by request from here.

A disabled person’s open letter to PCS general secretary Mark Serwotka.

Dear Mark

I am about to leave for London to join my trade union’s delegation at the TUC Women’s Conference. I find myself experiencing considerable anxiety at the prospect of coming into contact with members from the PCS delegation. I am writing to you, therefore, to ask that PCS please not set the police on me again.

About a year ago you gave an invited lecture at the university where I work. When questions were invited from the floor, I opened the questions as UCU Wales Vice Chair and asked,

“Mr Serwotka, it’s fair to say that for a great many of us in the trade union movement, PCS is considered the place you go after you die if you’ve been really, really good, and we consider you personally to be Jesus Christ. What can we as trade unionists do to make our unions more like PCS, and our union leaders more like you?”

You replied with some very useful practical advice on grassroots organising which I put to good effect when, a few months later, I organised a disabled-people’s anti-cuts direct action movement in Wales. This brought me into contact with a great many disabled people, and as a life-long and passionate trade unionist I was appalled at the very negative perception – and often outright hostility – that many disabled people hold about trade unions. I was really shocked, and could not understand this.

I still hold the views about PCS that I expressed when I asked you the question above after your talk at the university. But I have come to understand exactly why so many disabled people hold the trade unions in such low regard. Thanks to PCS setting the police on me for organising a peaceful direct-action campaign against the Welfare reforms. And thanks to PCS’s complaint against me to my own union UCU, as a result of which I am no longer UCU Wales Vice Chair.

When one is committed to peaceful protest and has never carried out nor threatened an act of violence in one’s life, receiving a very aggressive midnight visit from the police concerning one’s “criminal activities” and “plans to commit acts of violence”, followed by similarly aggressive engagement from the police on subsequent occasions, is a terrible shock. And when one is a disabled person, such experiences, as they did in my case, can trigger periods of significant ill-health which renders one somewhat useless as a campaign organiser.

But however awful my experience at the hands of South Wales Police, it was nothing compared to finding out almost three months later that it had been PCS who had set the police on me. And that my own union had known in advance of PCS’s intention to set the police on me, but had done nothing to notify me of this.

Fair enough. As PCS told both the police and UCU, I did make the following statement in a discussion on Facebook:

“I am exhausted to the core of being the hate figure of the trade union movement in Cardiff for having the audacity to object to PCS members destroying our lives. I’m so tired of being attacked by trade unionists who used to be friends and colleagues for “targeting” the poor innocent workers who are implementing the policies destroying us. To be honest, I believe that what PCS needs is a good many disabled people going down the jobcentres round the country and setting ourselves alight in front of them or otherwise committing suicide in horrific ways to show the fuckers what they’re doing to us. I volunteer to go first, I’m fucking exhausted and I don’t want to play anymore.”

I’m a foreigner, and what puzzles me about this is, when PCS passed this Facebook comment on to the South Wales Police and to UCU, you appear to have acted with an absence of the famous British commitment fair play and sportsmanship. Was it really sporting to give this comment to UCU and the police, without also giving them the full comment thread, the two days of acrimonious condemnation of disabled activists in which we were accused of wanting DWP staff to lose their jobs rather than implement the decisions that destroy our lives? In which we were accused (mainly by trotskyists not actually in PCS) of diverting PCS’s building for a general strike with our pathetic disabled-people’s side-issues (namely the fact that according to the DWP’s own figures, 73 disabled people a week die after the DWP stops their benefits)? In which we were accused of “dividing the working class”?

The thread also contained numerous other contributions from myself. In which I go at lengths to explain the disabled-people’s anti-cuts movement’s absolute commitment to peaceful direct action. And to absolutely never, never, never targeting individual DWP or Atos employees. I explained how on several occasions I’d had to intervene to stop disabled people advocating hounding DWP/Atos employees on Facebook, or slashing their tyres in DWP car parks. I explained at length how I’d, several times, worked right through the night to talk a desperate disabled person going down to the Jobcentre the next morning and killing themselves (many disabled people find us when they’re searching the internet for ways to commit suicide, believing the DWP has left them with no other option. We show such people that there is a way to channel such desperation in more positive, constructive ways by participating in peaceful direct action. Some of the people I stopped from killing themselves outside DWP workplaces have gone on to be some of our best activists and organisers).

Fair enough, tactically, I can understand PCS’s decision not to include in the complaint to UCU or the police anything about the context in which the comment was made, to exclude all my comments about how we run a peaceful campaign that never targets DWP/Atos staff, to exclude all my comments about how we work very hard to stop disabled people going to DWP workplaces and killing themselves, and to include the only comment in which (after considerable provocation and under tremendous stress) I lost my temper. Tactically, I can understand why PCS did that.

Tactically. If, say, the tactic was to shut down a campaign calling on PCS to organise a boycott of implementing the Welfare reforms that was gaining a UK-wide profile and gathering momentum, that some in PCS felt was in danger of diverting PCS’s attention away from its most important campaigning priority, namely building for a general strike.

It was easy enough to persuade both the police and UCU that I was a danger to the public: it’s well-known that I have a mental health condition. Never mind that folks with clinical depression aren’t generally known for our proclivities for violence. I have a mental health condition, which makes me, in PCS and UCU’s eyes, an unhinged dangerous nutter.

I have no idea whether this was the tactical consideration behind PCS setting the police on me. I’m not in PCS. I couldn’t possibly comment. However, judging by the numbers of PCS reps and officers who’ve contacted me, this does appear to be a hypothesis circulating in PCS.

This may possibly explain some rather startling information that was made available to me when I received, a week ago, the actual complaint against me that PCS made to UCU. Although these events happened in October, I’m only now beginning to learn what actually happened, firstly because no-one bothered to tell me for almost 3 months that it had been PCS that set the police on me, and secondly because UCU’s leadership appears to operate a strict no-engagement policy with members with mental health conditions (fair enough really: not only are people with mental health conditions very dangerous, we’re also very contagious).

So I had to resort to a Data Protection Act Subject Access Request to UCU to try to figure out what the hell PCS had said to UCU. It had, after all, cost me my position as UCU Wales Vice Chair. So I was rather keen to know.

So I was somewhat intrigued to learn the following:

PJemail

According to PCS, I’d “threatened violence against two PCS members.” And I’d “threatened to set fire to myself outside Transport House” (the Wales TUC headquarters, also home to PCS Wales).

This sure was news to me. But not, evidently, to my union’s leadership. Nor my fellow Officers of UCU Wales Council. Nor, evidently, to quite a lot of the rest of the trade union movement in Cardiff, as their disgusting attitude toward me in recent months suddenly begins to make sense. They’d all known since October that I’d planned to do these things. Yet I’ve only just found out, after a lot of hard work trying to find out what the hell’s going on. Because, when one has a mental health condition, all the normal trade union rules and custom and practice don’t apply. Being included in discussions about oneself, being informed of complaints against oneself, being shown the evidence, being given a right of reply. Stuff like that. Of course you have to suspend these things in the case of people with mental health conditions. Christ, there’s no knowing what they might do if you treated them like human beings. They’d probably go on the rampage or set fire to themselves or something.

And so PCS made the diagnosis, from the Facebook comment I’d made above, that I was planning to set myself alight in front of PCS HQ. Awesome. Ok fair enough. I have a mental health condition. It’s self-evident that when a person with a mental-health condition writes an exasperated Facebook post like the one I wrote, it obviously means they’ve actually planned to intentionally go and set themselves alight outside PCS HQ.

But the accusation that I’d “threatened violence against two PCS members” was a bit of a puzzle. Even given PCS’s expertise with regards making psychiatric diagnoses on the basis of Facebook posts, for the life of me I couldn’t figure out what on earth I could possibly have written on Facebook to have given PCS cause to believe that I’d ”threatened violence against two PCS members”.

But delving through the pile of senior UCU officers’ & officials’ that arrived from UCU’s legal department as a result of my subject access request, I found this:

MPemail

So this appears to be a UCU official reporting that a PCS official had “called to say he has had reports from a meeting last night” that I “threatened violence against two PCS members” as well as threatening to set myself alight outside Transport House.

The “meeting last night” refers to a Compass Cymru meeting which I and several other disabled activists attended, at which, on the panel of invited speakers, was a PCS national vice president.

The disabled activists were very unhappy with PCS because PCS in Wales was refusing to talk to, engage with or work with the disabled-people’s anti-cuts movement in Wales, in breach of PCS DWP Group Conference motions. So we decided we were going to raise the matter with the PCS national VP from the floor – a direct action. So I challenged the PCS VP on PCS Wales’ breach of its own policy toward legitimate disabled-people’s campaign groups, and asked Plaid Cymru president Leanne Wood (also on the panel) whether as a consequence of PCS’s refusal to work with us the Welsh Assembly would fund the mass evacuation of Welsh disabled people to Scotland to become refugees, where our key allies in the Unions were prepared to work with us.

This action was no different to other direct actions we carried out, for example when we went to the Co-operative Group’s South Wales Area Members Meeting and I moved a motion calling on the Co-op to make its supermarket skips accessible to disabled people, given that many of us now have to scavenge for food in supermarket skips thanks to Atos with which the “ethical” Co-op had a business relationship. That action, along with the guerilla hymn-singing storming of a Co-op Bank to hold a memorial service to the Co-op’s lost ethical principles, went viral on the internet and was a huge hit with disabled people, and was instrumental in the Co-op’s decision to drop Atos.

Do you know what the real reason for our campaign against the Co-op was, Mark? We did it for PCS. The Co-op had the same relationship with Atos that the DWP has for its staff: Atos carried out their occupational health. From PCS members we’d learned that Atos is just as horrendous at occupational health as it is at administering the Work Capability Assessments, and causes considerable suffering to PCS members. So we figured, if we went to PCS and said, Look, we forced the Co-op to drop Atos as their occ-health provider. If you organise a boycott among your members of implementing the decisions that destroy our lives re the WCA, we’ll launch a full-on nationwide direct-action campaign against all employers of PCS members that use Atos to do their occ-health.

That was the plan anyway. But it was scuppered by (1) PCS refusing to work with us or even talk to us, and (2) PCS setting the police on the campaign organiser, which kinda put a damper on everyone’s enthusiasm (and in addition caused the organiser an episode of severe ill-health).

So at the Compass meeting, I tried to engage with the PCS vice president afterwards (I’d always previously got along very well with him), to try to persuade him why PCS should work with the disabled-people’s movement in Wales. He told me he was refusing to speak to me on the grounds that I had accused DWP staff of being “murderers”. I was really appalled and assured him I’d never said any such thing, nor would I. He told me again he was refusing to talk to me. I asked him if I could send him an email to articulate our position. He said I could do so (I never got a reply).

Feeling terribly, terribly disheartened, and exhausted, I had an overwhelming need to be alone, so after the exchange with the PCS VP I left the meeting immediately and went home, feeling too depressed to even speak with the other disabled activists.

That is what happened at the meeting at which PCS claims I threatened violence against two PCS members. I know you won’t take my word for that, Mark. I have a mental health condition. Nothing I say can be relied on – these are simply the deranged ravings of a lunatic. Fortunately, therefore, you don’t have to. Because, like we did with all our direct actions, we recorded the entire proceedings. Including my exchange with the PCS VP.

The accusation that I threatened violence against 2 PCS members, and that I threatened to set myself alight outside PCS Wales HQ, are completely baseless. More so, this is, quite frankly, disability hate speech. This plays to the very worst of the most ignorant of discriminatory stereotypes of people with mental health conditions.

PCS has never told me why they set the police on me. But I understand that the reason given to your members who’ve asked is that PCS was concerned for my well-being and asked the police to make a “welfare check” to see whether I was ok.

When the police are asked to make welfare checks, in all other cases I’m aware of (and as admitted to South Wales Police themselves as part of our dispute resolution), they do so immediately. In this case, they sent round their PCS-ordered midnight intimidation squad 2 days after PCS made the complaint.

After PCS went to the police about me, and 36 hours before the intimidation squad actually arrived at my door, I saw several PCS lay reps and PCS Wales full-time officials – at a meeting. Given their very touching concern about my “welfare”, why didn’t any of my PCS comrades enquire after my “welfare” then?

Or if they were so concerned about me, why didn’t they phone me? I know quite a lot of the PCS Wales Council members and full-time officials socially.

If PCS was so concerned that I was a threat to your members, why then, the previous month, had I been allowed to volunteer with most of the PCS Wales council raising money for PCS’s hardship fund by serving with the Workers Beer Company at the Reading Festival? PCS Wales officers were well aware of my mental health because I was unable to work the full-6-hour shifts and they were really nice about allowing me frequent breaks. But given that PCS believes I’m such a fire risk, weren’t you putting your members at risk by letting me camp with them at the festival campsite? Or indeed driving a car-load of PCS folk to the festival & back in my car? Wasn’t PCS worried about what I might get up to with all that petrol in the car?

If PCS was so concerned that I was a threat to your members, why then did PCS not raise any concerns with the university that employs me, that sends me into workplaces full of PCS members to deliver courses? Quite a lot of PCS Wales senior officers knew that I was employed to deliver courses in public sector workplaces, because a couple of weeks before PCS set the police on me, I’d given them leaflets for the university’s workplace courses and asked them to distribute them to their members.

I am significantly disabled, and I am supported in employment by a Remploy support worker. Which several senior officers in PCS Wales knew about. Because I am quite open about discussing my own mental health condition as a concious attempt to normalise and de-stigmatise mental health (ok fair play I did a bit of a rubbish job there with my PCS mates).

Before anyone in PCS decides to set the benefit fraud police on me, I assure you the work I do is all declared, legit and has been given the ok by the DWP. Disabled people on ESA are allowed whatever small amount of supported “permitted work” their condition allows. Which is rather gracious of the DWP, given that even with this work I do not earn enough to live on.

So, at the same time that PCS believed I was such a danger to your members that you had to set the police on me, I was actually delivering courses in civil-service workplaces. In which I often have senior civil servants, Welsh Assembly Members, etc in my classes. And PCS knew about this. Did no-one think that if I really was as unhinged as PCS claimed, surely my employer, my Remploy support worker, or my students might have noticed?

My line manager, the Director of Teaching in a large university department, is a Facebook friend. As are many of my work colleagues and managers. They all followed the disabled-people’s direct action campaign with interest (and a lot more support than I got from UCU or PCS). If my Facebook posts were really so inflammatory (‘scuse the pun) that PCS had no choice but to set the police on me, don’t you think my managers might have noticed, and pulled me out of a very public-facing role?

I’m about to leave for the TUC Women’s Conference now. As well as a UCU delegation, there will be a PCS delegation. I haven’t really been among PCS folk much since you set the police on me and ousted me from trade union office. As you can imagine I’m rather nervous that PCS might set the police on me again. Given what a dangerous, unhinged, deranged – and inflammable – lunatic PCS believes I am, I’m really anxious I might get the police set on me again by accidentally doing something threatening. Like accidentally looking funny at a PCS member. Or giving them the evil eye, so that their crops fail, and their livestock die. Folks with mental health conditions were believed to be able to cast such evil eyes in Medieval times, and were sometimes burned at the stake for it. PCS’s approach to disability equality appears to be similarly Medieval. The one exception is you appear to believe that we burn ourselves alive, rather than you do it for us.

Could you please give me your assurance, Mark, that PCS will not set the police on me again? I assure you that I am totally ok. My medical team are quite happy for me to attend the TUC Women’s Conference. There is really, really, no need for PCS to be concerned about my “welfare”.

I suspect that PCS uses a very different definition of the word “welfare” that disabled people use. The semantics of PCS’s use of the word “welfare” appears to be much closer to the semantics of the ConDem’s use of the word, as in “Welfare Reform Bill”.

In fact, I would very much appreciate it if PCS could refrain from having any further concern for my “welfare”. Ever again. And that of disabled activists generally. We have a right to organise our own campaigns, and to participate in our trade unions, and to hold elected positions in our trade unions. I do appreciate PCS’s touching concern, but disabled people have enough shite to deal with right now thanks to the ConDems, and we really would be very much better off without PCS being concerned for our “welfare” in the way PCS was so concerned for mine.

Yours,

Dr Liza van Zyl (an unhinged lunatic who once held trade union office but now doesn’t, thanks to PCS)

Speak To The World In A Postcard

March 21, 2013

Published by request of United Response.

 

Just a few decades ago many people with disabilities or mental health needs were locked away from the rest of Britain in institutions, their voices ignored and their stories unheard. At United Response, which is now celebrating 40 years of challenging injustice, we want to rectify that.

 

Our Postcards from the Edges campaign gives anyone whose life has been impacted by disability or mental health the chance to speak to the world in a postcard – using words, photographs, art or anything that captures the imagination,

 

You don’t have to be disabled or have a mental health need to take part. We also want relatives, friends or anyone who cares about disability and mental health to take part and express their support or views. Anyone can either make a postcard at home and send it to us or create one directly on our website.

 

Later in 2013, a series of exhibitions will showcase the huge range of experiences, views and talents of the participants, doing for the creative abilities of disabled people what the Paralympics did for the sporting abilities.

 

There are already dozens of postcards on the website, touching on a variety of themes and issues.

infographic1infographic3

 

 

These are just a couple of the postcards that have already been submitted but they show just how simple or complicated you can make your own.  So, if you want to submit your own postcard and let the world know about the challenges you face, what obstacles you’ve overcome, your hopes, dreams and even fears then head on over to the Postcards from the Edges website.

 

You’ll find a handy program to design and create your postcard from scratch all in your web browser. If you prefer something more traditional you can request a pack to be sent in the post which includes templates and guidance on how to make a real postcard to send in to United Response.

 

Getting started can be the hard part with any creative endeavour, so the website also has ideas for themes as well as a library of existing postcards for you to use as inspiration. Remember, this is a way for you to express your thoughts and feelings in a powerful and visually striking way. There’s no right or wrong way to do it, so let your passion run wild.

 

Join United Response in celebrating forty years of mental health support and helping disabled people to be more independent and live life on their terms. Create your card and let the world know what you’re feeling.

Disability Hate Crime Victims Being Let Down

March 21, 2013

Victims of disability hate crime are being let down by the criminal justice system and attacks are not being properly recorded, according to a report by three official inspectorates.

A joint study by HM Inspectorate of Constabulary, the Crown Prosecution Service (CPS) and the National Probation Service argues that there is under-reporting of offences but acknowledges there is no “clear and uncomplicated definition” of what constitutes disability hate crime.

Michael Fuller, the chief inspector of the CPS, said the Law Commission had been asked to consider whether there should be a specific offence of disability hate crime.

The issue has received widespread publicity through several high-profile cases such as that of Fiona Pilkington, who killed herself and her disabled daughter Francecca in 2007 after Leicester police failed to investigate the years of torment they endured.

The figures assembled by the inspectorates suggest there is a lack of awareness of the problem and inconsistent reporting standards. The report said: “Many police forces do not have in place an approach that supported disabled victims from the point of call through to the case being considered at court.

“CPS lawyers display a lack of clarity in identifying and analysing offences, and sometimes fail to obtain sufficient evidence from the police in order to identify disability hate crimes.”

Fuller, a former chief constable of Kent, said: “This report finds that in many ways disability hate crime is the hate crime that has been overlooked. The criminal justice system must therefore change to provide an improved service for those with disabilities.”

Under section 146 of the Criminal Justice Act, which came into effect in 2005, courts can increase sentences for those found to have carried out an attack or crime that involved the aggravating factor of being a disability hate crime.

Of 810 CPS files flagged as involving disability hate crime issues, however, only seven recorded that an offender’s sentence had been increased on those grounds – suggesting the powers are being used insufficiently.

Broken down by region, the CPS files suggest that the north-west of England experiences almost three times as much disability hate crime as other areas of the country, with 174 cases. The report’s authors, however, caution that such a disparity is more likely to be a reflection of different recording practices.

Among the recommendations the report makes are:

• Agreement on a “single, clear and uncomplicated definition of a disability hate crime that is communicated effectively to the public and staff”.

• Increased reporting of disability hate crimes.

• Improved training for police officers, prosecutors and probation staff in dealing with disability hate crimes.

The report, Living in a Different World, does not contain examples of the types of offences commonly associated with such crimes nor does it assess whether the problem is becoming more severe.

One difficulty, the report suggests, is that police officers are often reluctant or too embarrassed to ask members of the public whether they are disabled. Incidents may therefore be missed.

Fuller said he believed most forces now had systems in place to record when victims are being repeatedly targeted – a precaution aimed at ensuring that the circumstances that drove Pilkington to her death do not recur.

What #Budget2013 Means For #Carers

March 20, 2013

I thought those of you who are carers might find this useful:

Britain Considers Three Person Embryos To Fight Genetic Diseases

March 20, 2013

The government is considering whether to propose legal changes that would allow radical new treatments for families at risk of incurable genetic diseases that involve the creation of so-called “three-person embryos”.

A national consultation released on Wednesday by the UK’s fertility watchdog found public support for techniques that involve introducing DNA from a third person to embryos which could prevent mothers from passing on devastating diseases, such as muscular dystrophy, to their children.

If ministers and MPs give the procedures the green light, Britain would become the first country to offer treatments that lead to children being born with DNA from three people: their parents and a woman donor. The amount of DNA from the donor is tiny compared with the parents.

About one in 6,000 people is born with a disease caused by genetic glitches in their mitochondria, the biological batteries that power the cells in our bodies. Mitochondria are inherited only from mothers and contain just 37 genes, held separately to the 23,000 genes that shape our appearance and define much of who we are.

Mitochondrial diseases tend to worsen with age, and affect parts of the body that burn the most energy: the heart, brain and muscles. Many children diagnosed early in life go on to suffer catastrophic organ failure.

Scientists have developed two techniques to prevent faulty mitochondria being passed on to children. Known as maternal spindle transfer and pronuclear transfer, they both involve transferring the genetic material from the parents into an egg donated by a healthy woman.

The treatment is controversial on several grounds, not least that the genetic modifications in the embryo pass down to all future generations. The techniques have never been tried in humans, but have worked in animal studies.

The HFEA ran a series of consultations and focus groups to gauge public attitudes towards mitochondrial replacement. Among a randomly selected sample of 1,000 people, 44% approved of the techniques, while 29% were against them. An open consultation, which allowed anyone with an interest to complete an online questionnaire, found 455 in favour, with 502 saying the procedures were not acceptable.

The report from the Human Fertilisation and Embryology Authority, which stressed a need for more research to establish the safety and efficiency of the procedures, will now be passed to ministers who must decide whether to seek parliamentary approval for the treatments.

The HFEA recommended that women who donated eggs for the treatments should be regarded as tissue donors, and the child would not have a right to know the donor’s identity.

“We understand that more research is required but believe it is crucial that the government moves now to draft the regulations so that mitochondrial patients in the UK will have access to this treatment,” said Doug Turnbull, director of the Wellcome Trust centre for mitochondrial research at Newcastle University.

Sarah Norcross, director of Progress Educational Trust, said: “Techniques to prevent inherited mitochondrial disease received the green light from the Nuffield Council on Bioethics last year, and have now received the green light from the general public. We urge the government not to create unnecessary roadblocks, and to pass legislation so that families blighted by mitochondrial disease can benefit from these techniques.”

A spokesman for the Department of Health said: “Scientists undertaking research have developed new procedures which could stop these diseases being passed on. But such procedures would not be allowed in treatment under current law, so we asked the HFEA to consult the public as to whether we should change the law.

“Once we have received the detailed advice from the HFEA over the next few weeks, we and the Department for Business, Innovation and Skills will carefully consider it and respond in due course.”

Robbie Crane

March 20, 2013

A boy from Hertfordshire who suffered brain damage after heart surgery in 1999 is to receive £7.3m compensation.

Robbie Crane, who is now 13, won an out-of-court settlement for a claim of alleged medical negligence against Harefield Hospital in Middlesex.

The Royal Brompton and Harefield NHS Trust denied liability.

Robbie’s parents said the settlement, which was given final approval on Wednesday, would allow the family to “plan for the future with confidence”.

Their son was born with transposition of the great arteries.

He was admitted to Harefield Hospital for the defect to be corrected in October 1999, when he was a few days old.

The surgery was successful but a legal claim was brought relating to alleged negligent treatment during a period of ventilation afterwards.

‘Challenging process’

Robbie, who now has cerebral palsy, learning difficulties, limited speech and behavioural problems including no sense of danger, will need specially-adapted accommodation and round-the-clock care for the rest of his life.

In 2011, the High Court heard that settlement in the case had been reached with the Royal Brompton and Harefield NHS Trust on the basis that it would pay 70% of the full value of the claim.

On Wednesday, Mr Justice Tugendhat, approving the settlement, paid tribute to the devotion shown by Robbie’s parents, Catherine and Barrie.

Neil Block QC, for the trust, said that although no admission was made as to breach of duty, he wished to apologise to the family and hoped that one huge worry had been lifted from their shoulders now Robbie was financially secure.

After the hearing in London, Mr and Mrs Crane said: “This brings to an end a long and challenging legal process but the daily care that Robbie requires will continue for the rest of his life.

“We were repeatedly told that there was no chance of securing compensation but our legal team urged us on and so it is a great relief to finally have it decided.”

Perspectives: Warwick Davis – The Seven Dwarfs of Auschwitz

March 20, 2013

This will be on ITV on Sunday at 10pm:

 
The Life’s Too Short star tells the extraordinary survival story of the Ovitzes, a Jewish family of travelling musicians who survived imprisonment at the Nazi concentration camp during the Second World War. The siblings endured hideous human experiments at the hands of Josef Mengele, known as the Angel of Death, but lived to see the liberation of Auschwitz and spent several months returning to their Romanian home on foot following their release from a Russian refugee camp

Winchester Prison: Two Disabled Men ‘Locked Up All Day’

March 20, 2013

Two elderly disabled men were locked up together at Winchester prison for almost 24 hours a day, without easy access to showers.

Inspectors said the men tried to wash in their cell but nearby showers were not adapted for disabled people.

A damning HM Inspectorate of Prisons report revealed the inmates’ plight among a raft of “serious concerns”.

It said the Victorian prison “deteriorated sharply” but new governor David Rogers was tackling problems.

The men, one in his mid-60s and the other in his 80s, could not work and were confined to their cell for 23-and-a-half hours a day and relied on fellow inmates to bring them meals.

The cell, meant for one prisoner, had only one small window which was painted over.

Drugs and violence

Mr Rogers said: “There were issues around them because we don’t have disabled showering facilities on the wing.

“However there were disabled facilities available for them in an adjacent wing.

“They chose not to engage with us or use those. We should have tried to engage with them better”.

Continue reading the main story

Victorian prison

  • HMP Winchester was built in 1846 and houses category B and C offenders.
  • A separate annexe was built in 1963 and housed young offenders. In 1995 this became West Hill Prison for adult women.
  • In 2005 the annexe became an category C adult male training unit.
  • The prison’s C wing was fully refurbished in 2008 and has a variety of uses including induction, first night stay and detoxification.

One of the inmates has now been released. The other has moved to another prison.

Meanwhile more than half of prisoners reported feeling unsafe and inspectors criticised the handling of violent incidents.

One third of the 680 prisoners said drugs were easily available and one-in-10 reported developing a drug problem in jail.

However the experience of prisoners at category C annexe West Hill was “much better”.

Mr Rogers said: “Winchester fell well below the standards expected and I’m not going to hide behind that.

“However we have made huge strides in the last six months”.

Frances Crook, chief executive of the Howard League for Penal Reform, said: “It is exceptionally disturbing to see a prison with a previously good reputation collapse to such lows.

“The damning report into this overcrowded and dangerous prison is yet another symptom of our overstretched and wasteful justice system.”

Nick Hardwick, HM Chief Inspector of Prisons, said: “The new leadership was aware of many of the problems and we saw early signs of determined efforts to tackle them.”

Barnet Council ‘Broke The Law’ Over Contract, Court Hears

March 19, 2013

A Conservative council broke the law by trying to push through a £320m outsourcing contract to a private company without properly consulting the public, it was claimed in the high court on Tuesday.

The London Borough of Barnet is being challenged by a local resident in a case that will determine the fate of a radical reform of public services that has been compared to the creation of a no-frills “easyCouncil”.

At the start of a two-day hearing into what the court heard was a “big bang” approach to town hall reform in the face of Whitehall cuts, Barnet was accused of creating a “smokescreen” around its alleged failure to consult residents.

Maria Nash, a 67-year-old disabled former holistic therapist from the north London borough, is challenging the council’s decision to outsource two contracts which together amount to around £600m over 10 years, accounting for 15.5% of the council’s budget. Should they go ahead 790 full-time jobs will be transferred to the private sector.

Mr Justice Underhill, reviewing the legality of the moves, said the scale of outsourcing being attempted by Barnet was “unprecedented”.

Representing Nash, who attended court in her electric wheelchair along with around 20 supporters, Nigel Griffin said a description of the process of consultation put before the court by Barnet was “all so much smokescreen” and while it purported to explain the steps of a consultation process, analysis showed it did not stack up.

“There is nothing here that comes to an even measurable distance of compliant consultation on letting a contract of this kind,” Griffin said.

Nash’s case is that Barnet failed to consult before outsourcing; failed to comply with the public sector equality duty; and breached its fiduciary duty by failing to properly consider other options.

The customer services and back office contract with Capita is due to come into effect in April and is set to be followed later this year by a second £290m contract to outsource planning, cemeteries, highways, environmental health and other services.

Griffin told the court that “in all the evidence described and referred to” by Craig Cooper, commercial director of Barnet, “in support of his assertion that Barnet carried out consultation, there is only one reference to outsourcing”.

For a long-period Underhill and Griffin scoured council documents for references to terminology that could be understood to mean outsourcing, but repeatedly struggled to do so.

The judge commented on the name the council had given to its reform programme, saying: “‘One Barnet’ doesn’t really mean anything. It has no inherent meaning. It is such a general term you have to analyse it each time it is used to understand what it is intended to mean.”

Examining the One Barnet framework document, the judge said there was “nothing explicit” about outsourcing, adding: “the language is very opaque”.

Griffin said at the root of the case was “whether an outsourcing company which expects to maximise the profits it makes is really going to deliver the same or better quality of service as the in-house provision … These are real concerns especially but not only to those who are in a vulnerable position because of disabilities.”

The court heard the deals will “effect radical and comprehensive change in the way in which the council functions. Many of the council’s core functions will be put in the hands of a private contractor or contractors for a 10-year period, leading to wholesale transfer of staff from the council to those contractors and to the physical relocation of many of them to other parts of the country.”

The hearing continues and counsel for Barnet, Monica Carss-Frisk QC, is expected to begin her case on Wednesday.

#NHS ‘Failing People With Learning Disabilities’

March 19, 2013

People with learning disabilities are dying on average 16 years earlier than they should, because the NHS does not properly investigate and treat their physical complaints, an inquiry has found.

A confidential inquiry into deaths in the south-west, carried out by Bristol University academics and funded by the Department of Health, has revealed stark inequalities and recommends the creation of a review body to investigate and monitor learning disability deaths across the UK.

The charity Mencap estimates from the review findings that more than 1,200 children and adults die every year because they are not getting proper NHS care. More than a third (37%) are not getting the healthcare they should.

“A scandal of avoidable deaths on the scale of Mid Staffs takes place every year for people with a learning disability in the NHS. These deaths, caused by poor care and delays in diagnosis and treatment, highlight the scale of discrimination faced by disabled patients in the NHS,” said Jan Tregelles, the acting chief executive of Mencap.

The confidential inquiry into the premature deaths of people with learning disabilities (CIPOLD) examined the sequence of events leading up to death of all known adults and children with learning disabilities in five primary care trusts of the south-west over a two-year period – 233 adults and 14 children.

They also examined the illnesses and deaths of 58 other adults without learning disabilities but of similar background and state of health for comparison. They found that 22% of people with learning disabilities die before the age of 50, compared with just 9% of the rest of the population.

Other adults were more likely to die prematurely because of smoking, alcohol and a poor diet – all factors connected with lifestyle.

People with learning disabilities, however, were more likely to die early because there were delays or problems with investigating, diagnosing and treating their illnesses. They were also more likely to have problems in having their needs identified and getting the appropriate care. Their families or carers had more problems in getting their views heard and listened to. The review team says premature deaths could be avoided by better health and social care.

Dr Pauline Heslop, the study’s lead author at the University of Bristol Norah Fry Research Centre, said: “This report highlights the unacceptable situation in which people with learning disabilities are dying, on average, more than 16 years sooner than anyone else. The cause of their premature death is not, like many in the general population, due to lifestyle-related illnesses.

“The cause of their premature deaths appears to be because the NHS is not being provided equitably to everyone based on need. People with learning disabilities are struggling to have their illnesses investigated, diagnosed and treated to the same extent as other people. These are shocking findings and must serve as a wakeup call to all of us that action is urgently required.

“We have, over the past few years, been rightly horrified by the abuse of people with learning disabilities at Winterbourne View hospital and of vulnerable patients at Mid Staffordshire. The findings of the confidential inquiry into the deaths of people with learning disabilities should be of no less a concern.”

Judicial Review Of Barnet’s ‘easyCouncil’ Plans Due After Disabled Woman Fears For Her Life

March 19, 2013

The “easyCouncil” model of no-frills local services faces a high court challenge today, with locals from the London Borough of Barnet, including the disabled resident Maria Nash who is bringing the action, calling for a £320m privatisation deal to be scrapped.

The judicial review will examine one of the most radical and controversial projects by an English council to respond to deep Whitehall cuts which Barnet have labelled “One Barnet”. Nash, 67, a former holistic therapist who relies on publicly funded care assistants, has said she fears for her life if responsibility for her support is transferred from the council to the private outsourcing firm, Capita, in April. The judicial review of the legality of the contract means the signing of the deal, which was supposed to happen at the end of January, has been delayed.

Protesters from the campaign group Disabled People Against Cuts and the local Barnet Alliance for Public Services (BAPS) are expected to demonstrate outside the Royal Courts of Justice on the Strand in London this morning.

Tirza Waisel, the co-ordinater of BAPS, said: “Maria is a disabled person and is right to be worried about what will happen to her in future. If One Barnet fails, a scheme that was set up ostensibly to save money will end up costing more, and mean further cuts in services beyond the point where Barnet residents can live a decent life.”

Like many councils, Barnet has been seeking radical measures to reduce its budget by10% as a result of declining council tax revenue and a smaller grant from Whitehall.

Nash’s case is that neither the Capita contract, nor a further planned £290m contract to outsource planning, cemeteries, highways, environmental health and other services, are legal because the council has failed to consult on the decisions, has failed to meet its public sector equality obligations and based its decisions on “grossly inadequate assessments of the relative merits and risks involved and hence are unreasonable and amount to a breach of its fiduciary duty”.

Barnet is understood to be confident its policy will survive intact and Dan Thomas, council member with responsibility for resources, has said the new support and customer service organisation contract will save the taxpayer £1m a month.

NEW WEBSITE OPENS UP BRITAIN’S TOURISM BUSINESS

March 19, 2013

A press release I’ve just received:

Every tourism business can reach out directly to the lucrative accessible tourism market from today with the help of the new OpenBritain.net website.

OpenBritain.net, which is being led by the charity Tourism for All UK, is set to become the leading website for disabled visitors into and within in the UK. It has been developed in direct response to feedback from last year’s Paralympic Games when a large number of Britain’s disabled visitors said that they found it difficult to piece together all the information they need.

The service, whose founding sponsors include Clos-o-Mat, Omni Serv and AVH, will also provide comprehensive listings of mobility equipment suppliers. This means it will be equally useful to operators seeking to make their facilities and services more accessible.

Speaking at the OpenBritain launch at the House of Lords today, the famous Paralympian Baroness Tanni Grey-Thompson said “Planning any sort of trip when you have a physical disability can be a real challenge. Bringing together all the information that’s needed into one site will be a tremendous help and is long overdue. I hope that every hotel, attraction and restaurant in Britain will take advantage of the chance to easily promote their facilities to disabled travellers.”

Over one-quarter of the UK population have a long standing health problem or disability, making the demand for accurate information about accessible services and facilities a national imperative. Conservative estimates value the disabled travel market in excess of £2 billion and the biggest single barrier for travellers is piecing together all the information so they can manage (source VisitEngland, March 2012).

“In our inclusive society, it is vital we enable as many people as possible to enjoy the facilities Britain has to offer,” says Ian Tomlinson, Commercial Director of Clos-o-Mat, lead sponsor of today’s OpenBritain launch. “To our mind, that includes making sure there are appropriate toilet facilities for them. We go to the toilet several times a day; research shows people will decide NOT to visit somewhere unless they are sure there are suitable, clean and working toilet facilities, so there is commercial sense in helping people ‘spend a penny’!”

Facebook Page For Funeral Expenses Of Harry And Cody Churchill

March 18, 2013

I was so very sad earlier this afternoon when I read about Harry and Cody Churchill, two lovely little brothers who died of a rare condition just two days apart.

I’ve just found out that a Facebook page has been created to raise additional costs as their parents prepare for their funerals.

As the parents ask, even if you are unable to donate, please share the page anywhere possible.

I’m sharing this page because it is impossible for an adult who knows a young child not to be touched by this story.

I’m sharing this page because money is the last thing that should be on the mind of any grieving parent or child.

I’m sharing this page because I have lost two very special friends to disability myself. Had their parents needed financial help, I would have hoped that someone would have set up a page like this for them.

I will donate one penny to the fund for every hit this post receives by midnight tonight.

 

EB Brothers Harry And Cody Churchill Die Two Days Apart

March 18, 2013

Two young brothers with a rare skin condition have died within days of each other, their family has said.

Harry and Cody Churchill from Poole, aged three and 21 months, both had epidermolysis bullosa (EB) and developed infections.

In January the Churchill family had taken part in a BBC Inside Out programme to raise awareness of EB.

Younger patients are sometimes called “butterfly children” because their skin is fragile like a butterfly’s wings.

Harry died at Julia’s House hospice in Corfe Mullen on Wednesday and Cody died on Friday in hospital in Poole.

‘Strong bond’

In a Facebook post, parents Chris and Steph Churchill said: “Losing two children in two days is anyone’s worse nightmare. The only comfort we have is knowing they are reunited as one.

“Cody couldn’t live without Harry – their bond was far too strong.”

The skin condition affects about 5,000 people in the UK.

It causes the skin to become very fragile and any trauma or friction can result in painful blisters.

The family previously said they had taken part in the TV programme as they wanted to make life easier for others coping with the condition.

They’re Talking About Making Us Pay For Food In #NHS Hospitals…

March 18, 2013

https://twitter.com/archangelolill/status/313449340356153346

Share everywhere…

Special Mother Jane Raca Says Families Of Disabled Children Shouldn’t Suffer Alone

March 18, 2013

I covered her book in the past- now it seems she campaigns, too.

Help Alex Spourdalakis!

March 18, 2013

Friends, followers, readers in America, please read this and send in your comments to CNN.

Activist Convicted For Peaceful Protest At Cameron Event

March 17, 2013

A woman has described her shock after being found guilty of a public order offence for telling David Cameron he had “blood on his hands”.

Bethan Tichborne, 28, said initially she assumed her court summons was a bureaucratic error after she was arrested for protesting against cuts to disability benefits. But she was told by a district judge that her comments must have hugely insulted the prime minister.

Cameron was switching on the Christmas lights in his Witney constituency in Oxfordshire, in December, when Tichborne tried to climb a barrier with her homemade placard. The one-woman protest, she claims, was against cuts leading to the deaths of people with disabilities. She believes her conviction at Oxford magistrates court last week was politically motivated.

District Judge Tim Pattinson told her: “It is difficult to think of a clearer example of disorderly behaviour than to climb or attempt to climb a barrier at a highly security-sensitive public occasion.”

Judge Pattinson praised Tichborne’s previous good character but said her comments that Cameron “had blood on his hands” could “hardly be more insulting to anyone, whether a politician or not”.

The 28-year-old was convicted of using threatening words or behaviour to cause harassment, alarm or distress.

Tichborne, a teaching assistant who works with disabled children, said that she now intends to appeal against the conviction. “My faith in the court system is a bit shaky but on the other hand I feel I’ve got to hold them to account.”

He added: “I am really quite shocked and quite sad … I had a placard that said Cameron has got blood on his hands and shouted disabled people are dying because of Cameron’s policies.

“The judge said stuff in his verdict that made it very clear it was political, like he couldn’t think of anything more insulting or offensive.”

She also alleged how police beat her up moments after she tried to scale the barrier separating Cameron from the crowd.

“Two lots of Cameron’s undercover police grabbed me but then when I was turned over to Thames Valley police they just put me face down on the ground and beat me up quite badly. I was really scared, it felt like there were at least three or four, someone kneeling on my back, someone stamping on my knees.

“My nose was bleeding, my glasses had come off, I had no idea what was going on. I got really scared when one of them who was on my back moved up and put their knee with quite a lot of weight on the back of my neck. I started thinking: ‘Oh God I can see the headlines.’ I thought they were going to do real damage.”

The court hearing was told that a children’s choir standing at the side of the stage, waiting to perform, were terrified and that their shocked teacher heard Tichborne swear before trying to climb over the waist-high barrier.

A police officer told the court that Tichborne’s demeanour was “angry, fixated, aggressive and very focused on her intentions”.

Tichborne added: “I really genuinely thought it was something kind of a bureaucratic mistake that it had come to court. I really really didn’t expect to be found guilty, two-thirds of the public gallery walked out in protest as the verdict was being read out.”

She had wanted to read out a version of “Callum’s List” which documents the names of those who have allegedly died, through suicide or natural causes, as a result of losing their benefits.

Pattinson ordered her to pay a £225 fine, a victim surcharge of £22 and to make a contribution of £500 towards court costs, which supporters of Tichborne have already raised .