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Glasgow City Council: Keep Disabled Boy In Special School That Meets His Needs

September 21, 2012

I’ve just signed this petition.

Stacy Stafford’s son, Aaron Cleary, is in a special school in Glasgow. He was originally offered a two year placement there because the school only had pupils up to the age of 7. The school have since changed their policy and are happy to offer Aaron a place for the rest of his primary education.

However, Glasgow City Council is trying to remove Aaron, now 8,  from the school after the originally agreed two years, probably because of cost.

The school meets all of Aaron’s needs. He is happy there and has made friends. His mother, who as all parents do knows her son better than anyone, thinks the school is the best place for him and wants him to stay there.

The meeting of needs and the happiness of parents and their children are, I have always believed, the most important things that should be considered when school placements are given to disabled children.

That’s why I’m asking you, if you live in the UK, to join me in signing this petition to Glasgow City Council.

Lady Gaga Fan, 6, Has Born This Way Logo On His Wheelchair

September 21, 2012

Yet again, Lady Gaga proves what a good person she is.

A dress made of raw meat, a giant egg and a telephone hat… Lady Gaga has worn some of the most eye catching outfits ever made.

But even the US pop icon was impressed when she met one of her young fans, or ‘little monsters’ as she calls them, on a trip to Dublin.

Oran Murphy, from Newtownabbey, County Antrim, who has spina bifida, is a huge Lady Gaga fan.

The six year old has a specially adapted wheelchair which has a picture of Lady Gaga and the Born This Way logo on the wheels.

Lady Gaga was performing in Dublin as part of her Born This Way Ball world tour.

Oran said he was “shaking” when he got to meet his idol.

Laura Rossborough, Oran’s mum, told the BBC how her son loved music and going to concerts.

“Oran loves music and his favourite hobby is going to concerts. As Oran is in a wheelchair he can’t always be near the front,” she said.

“Sometimes we end out right at the back and Oran can’t really see.

Devastated

“His favourite singer is Lady Gaga, he loves her shows and her music. He told me he really wanted a picture of her on his wheelchair.

“His favourite picture is the Born This Way album cover. He is a really happy wee boy and he likes to say that he was ‘born this way’ so it seemed appropriate to get it put on the chair.

“Thankfully the record company gave us permission to use the picture.”

When Lady Gaga was performing at the MTV EMAs in Belfast in 2011 Oran had hoped to meet Lady Gaga, but they missed their chance when Oran’s mum wasn’t able to get his wheelchair out of the car in time.

“Oran was devastated that he missed his chance to meet her so we knew we had to try everything we could to get him to meet her this year” Laura said.

“When we found out she was going to perform in Dublin we decided we would go down and see the show. Oran dressed up as Lady Gaga’s alter-ego Joe Calderone.

“The stadium was huge and we were quite near the back, Oran couldn’t really see but a nice security guard moved us down to get a better view.

“During the concert, we heard that some people from the standing area would get to go backstage which was disappointing as Oran can’t go into the standing areas.”

After the concert Oran and his mum were outside hoping to see the singer leaving the stadium.

A woman approached them and said she would try and help them get to meet Lady Gaga.

She approached a security guard who fetched a member of the singer’s management team.

Big hug

“When he saw Oran dressed as Joe Calderone and in his Born This Way wheelchair he said he would see what he could do.

“I couldn’t believe when he came back and said she would see us. Oran was so excited.”

Laura and Oran were then invited into Gaga’s dressing room.

“I was shaking, it was so exciting” Oran told the BBC.

“She really liked my wheels and I asked her if she would sign them. She said yes and wrote Lady Gaga on them.

“I told her I had come dressed as Joe Calderone and she gave me a big hug and a kiss.”

Oran’s mum was also able to speak to the artist.

“She couldn’t get over his wheels and her heart just melted when she realised Oran had dressed up as Joe Calderone.

“It meant so much to him that she liked his wheelchair. It’s something he will never ever forget.”

Treasury To Blame For Care Funding Reform Failure Says Former Minister

September 21, 2012

The Treasury is to blame for a failure to reform care funding in England, a former Lib Dem minister has said.

Paul Burstow said the Treasury saw no need for change and was happy to “kick the can down the road”.

Care groups have backed a proposal that the state cover elderly and disabled people’s care costs over £35,000.

The government, which is continuing to look into cheaper options, said the Treasury had played a major part in getting care back onto the agenda.

Ministers have said they support the principle of a cap, proposed by the independent Dilnot Commission – but as yet there is no commitment to finding the money to pay for it.

The Dilnot package would cost the Treasury almost £2bn a year.

‘Historic opportunity’

The government is expected to include its plans on paying for the cost of care in the next spending review, to begin next year.

Writing in the Daily Telegraph, Mr Burstow – a former care services minister – said there was a “historic opportunity” to change the system for the better but feared that the government would put it “back in the too difficult drawer”.

 “The coalition made a good start, setting up the Dilnot Commission within two months of taking office. But sustaining that pace has been tough,” he said.

One of the reasons behind this was, he said, reluctance from the Treasury to back the reforms.

“The Treasury’s view is simple, kick the can down the road despite our rising elderly population. No sense of urgency. No recognition that left unreformed there is no incentive for families to plan and prepare.

“In the view of mandarins there is no need for change, and certainly not yet. That has been the Treasury line every time a reform plan has popped its head above the parapet.”

Mr Burstow, who lost his job in the recent reshuffle, said he had received more correspondence from MPs about care costs than any other topic.

“The good news is so far the Treasury has failed to smother the latest plan, a cap on lifetime care costs,” he added.

“Ending the scandal of people forced to sell their homes to pay for care would be a legacy for this government felt for generations.”

‘Dragging heels’

He later told BBC Radio 4’s Today programme that the government had made “a lot of progress” on the issue but urged Mr Osborne to show the “political will” to go the final step.

“The division, I think, is between the Treasury and everyone else. Both the prime minister and deputy prime minister have signalled over the summer their determination to see this now happen but that does require the Treasury to actively engage with the Department of Health to work through how you pay for it and actually deliver this reform…

“In the end, it does require the chancellor of the day to actually say ‘this has to be a priority and this is now what we are going to deliver’.”

A coalition spokesman branded Mr Burstow’s remarks as “rubbish”.

“Unlike under the previous government, the Treasury has played a major part in getting Dilnot back onto the agenda, not least by working to ensure we have the sustainable public finances that are necessary if it is to be delivered.”

But Labour shadow minister Jack Dromey welcomed the former minister’s intervention.

“Paul Burstow is right,” he wrote on Twitter. “Cameron and Osborne are wrong to drag their heels on peace of mind for those in need of care and their families.”

Jackie Meacock, Who Had Dystonia, Has Died At Dignitas

September 20, 2012

As always, I feel sad that a disabled person has chosen to end their life too soon in this way.

In this case, one line from Jackie Meacock’s video stays with me.

She said: “If I was a dog, you would put me down.”

This is true. Animals do get put down when vets feel they are in too much pain to live. It could be argued that people put their pets down to avoid them suffering. If you believe that disabled people suffer, if you support the right to die, then you are likely to hold this view.

However, if you belive that vets put animals down because animals’ lives  are less valuable than the lives of humans, then you are likely to share my personal opinion. My personal opinion, as I have written here many times before, is this:

I have always supported disabled people’s right to live with support for as long as is naturally possible. I have never supported the right to die and I will never do so. This is precisely because disabled people are just as human as anyone else. Disabled people are not animals. To give us an injection or a liquid solution to end our lives is to ‘put us down.’

This suggests that the value you place on our lives is the value you place on the lives of animals.

I own a cat. But I would like to think that my life is, even  just a little bit, more valuable than the life of  my much-loved pet.

If it becomes legal for a doctor to kill me, as it is legal for a vet to kill my cat, what will be the difference between us?

It could be argued that this is a harsh way of putting the situation. However, I would have to disagree. I have never been able to find the words to express this point before. However, Ms Meacock phrased my thoughts perfectly in a sentence.

That is the best tribute I can pay to her, even though I disagree with the choice she made.

 

Motability – Claiming what you’re entitled to

September 20, 2012

This is a guest post by John Jackson. Thanks to John.

It´s a sad fact of life that the disabled people throughout the world are not always treated equally as human beings. Recent news stories have highlighted the issues that face people with disabilities, be it discrimination due to wheel chairs or being banned from emigrating with your family due to a disability. Even people with experience in dealing with disability have shown prejudiced attitudes towards disabled people. But if there is one lesson we can learn from the Paralympic games over the summer is that disabled people can be just as capable as the able bodied.

To aid this, support systems such as Motability have been set up. Since 1978, the Government Motability scheme has helped over two million disabled drivers in the UK purchase a car and with thousands of dealerships throughout Britain signed up to provide specially-equipped vehicles, insurance, maintenance, servicing, tyres, windscreens and RAC breakdown recovery, acquiring a car worry free is easier than ever.

Today the scheme for disabled drivers is run by the non-profit organization Motability a national charity that are responsible for overseeing that the financing, administration and maintenance of cars registered under the Motability Scheme is taken care of. Their collaboration with specialist car dealers nationwide allows ordinary people to live their lives in extraordinary ways.

Who is entitled to Motability?

In order to qualify for a car under the Motability Scheme you must be in receipt of the Higher Rate Mobility Component of the Disability Living Allowance or the War Pensioners’ Mobility Supplement. If you are you are entitled to apply for a new car of your choice on a three year contract and trade in the vehicle for a newer model every three years.

Motability car dealerships

Car dealerships are available all over the UK from specialists carrying reputable brand names such as Alpha Romeo, Audi, Ford and Lexus to name but a few. One such car dealership is Benfield motors in the North of England which offers a range of vehicles from no fewer than 11 different brands and dedicated Motability specialists. Many car dealerships offer Motability services however they tend not to be that heavily publicised. Your best bet is to either contact your local dealers and ask directly or use the Motability site itself to find the right vehicle for you.

For more information about the Motability Scheme contact Motability who are on hand to answer your questions and will be able to direct you to all the specialist car dealerships nearest to you. If you disabled but able to drive and eligible under the Motabilty Scheme, you can make life more convenient, flexible and fulfilling by taking out a Motability car deal that you are entitled to.

KIDS launches free eLearning for schools wanting to include disabled children.

September 20, 2012

A press release I have just recieved from KIDS:

Today KIDS launches a new eLearning package for schools, aimed at ensuring an inclusive welcome to all disabled children regardless of their impairment.

 

KIDS is the charity that works with disabled children, young people and their families. As part of the ‘Delivering Inclusion’ project, sponsored by the Department for Education, KIDS has created an eLearning suite aimed at ALL school staff, from non-teaching assistants and lunchtime supervisors, through to SENCOs, teachers, head teachers and school governors.

 

Titled ‘Creating an Attitude of Inclusion’, this eLearning provides examples of best practice and professional guidance to support schools in ensuring that they foster a supportive environment, so that disabled children and young people can learn alongside their non-disabled friends and peers.

 

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)

 

‘Delivering our vision depends on every teacher having excellent knowledge and skills. However, at present teachers’ initial training does not always equip them with the tools to identify and meet a broad range of needs. Children and young people have told us that they find it frustrating when those who help them in school or college have an insufficient understanding of their conditions or needs. Teachers tell us that understanding different types of SEN helps them to teach effectively and that more could be done to make specialist training available.’ (page 59)

 

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

 

If you want to find out more about the ’Delivering Inclusion’ project, you can find more information here: http://www.kids.org.uk/information/100347/106207/106214/106870/for_pathfinder_authorities/

Disability Rights Campaigner Adam Lotun Standing In Corby By-Election

September 20, 2012

I’ve just read in today’s Society Daily that Disability Rights Campaigner Adam Lotun is standing as an Independent candidate in the Corby by-election.

This is Adam’s election campaign website.

As a disabled person who would love to be in Parliament myself one day, I am very impressed by Adam’s wish to stand independently. I think there should be many more disabled MPs than there currently are.

I wish Adam all the very best with his election campaign, and I would be very pleased to see him win the seat.

Mother Who Lost 7 Children Agrees With Three Parent IVF

September 20, 2012

Sharon Bernardi lost all seven of her children to a rare genetic disease. It has driven her to support medical research that would allow defective genetic material to be replaced by DNA from another woman.

Every time Sharon got pregnant she would pray that this time it would be different.

She felt fine during pregnancy and the births went well, and then quickly something would start to go wrong.

Each of her first three children died within hours of birth and no-one knew why. “It took us a long time to get over the first one and then it happened again. I was bewildered,” says Sharon, from Sunderland. “I was in shock.”

After the third child died, doctors began to suspect that the deaths weren’t coincidental. But genetic investigation didn’t provide any definite answers.

At the same time, her mother revealed that she’d had three stillbirths before Sharon had been born. Further investigations by doctors revealed that members of Sharon’s extended family had lost another eight children between them.

“I didn’t know about my mum’s history,” says Sharon. “There was no need for me to know. I was my mother’s only child. And I think that in her era people didn’t really talk about things as they do now.”

Then along came Edward, Sharon’s fourth child. This time the doctors were more prepared. For his first 48 hours, Edward received drugs and blood transfusions to prevent the lactic acidosis (a kind of blood poisoning) that had killed his siblings. Five weeks later Sharon and her husband Neil were allowed to take Edward to their home in Sunderland for Christmas.

Edward lived. Although his health was often poor and Sharon had to care for him a lot of the time, he was a cheerful, active boy. At the age of four he started to have seizures. It was then that the doctors were finally able to diagnose Edward’s – and indeed Sharon’s – problem.

Having gone through the history of Sharon’s babies, doctors diagnosed Edward with Leigh’s disease, a disorder that affects the central nervous system. The disease is caused by a defect in the mother’s mitochondria, often referred to as the power plant of the cell.

“This is going to sound strange but I was relieved that, at last, I had an answer.”

Not that the news made life much easier for Sharon. Her doctors told her that Edward could enjoy long periods of remission but that his health could also go down quite quickly. And meanwhile there was always the risk of Edward dying in one of his seizures, which could last for days.

“It’s hard when you want to have a family, and you finally have a baby like Edward, and you think you’re finally getting somewhere with your hopes and your dreams, and then somebody tells you that at any moment your child is going to die.”

Sharon and Neil Bernardi were told that Edward was going to die before he was five. “Obviously, you either go down or you start fighting,” says Sharon. Edward and his mother were fighters. In the end Edward survived into adulthood, dying last year at the age of 21.

Sharon and Neil kept on trying for a healthy baby but without luck. Although three more children were born, none lived beyond the age of two. Each time one of their children died, they told themselves that “the death was a one-off”. After their last child had a heart attack and died in 2000 they stopped trying.

“People ask, what was different about Edward? How come he survived as a baby when he had all the problems that would later build up? I don’t know but Edward had some fight in him. He was fighting to survive all his life. I think that was in his personality.”

The death of all her children put strains on her marriage, and on the wider family. “It also affects the family, the grandparents, their hopes and dreams for their grandchildren.”

People have accused Sharon and Neil of being selfish for wanting what they cannot have – their own family of healthy children. “I don’t think I am selfish,” says Sharon. “I wanted my child to be healthy.”

“In the last year of his life Edward was in chronic pain. He had dystonic spasms caused by things going wrong in his brain. His muscles would go into spasm for up to six hours at a time. Drugs could not help him. Part of Edward’s body was beginning to fail.”

The suffering of Sharon’s children has convinced her of the need to pursue the kind of genetic therapies that would allow mitochondrial defects to be remedied.

“When you see somebody in pain you don’t want to see somebody else in pain. You don’t want to see a child who is born only to suffer and die before they’re two, or if they do survive to have devastating disabilities.”

“It’s not about being selfish. It’s not about wanting designer babies. It’s not about doing injustice to people with disabilities. It’s about trying to create a healthy baby. It’s about trying to give a child a future.”

Locked In Man ‘Martin’ 47, Will Continue Legal Bid For Right To Die

September 20, 2012

The wife of a man whose legal challenge was heard alongside Tony Nicklinson’s has spoken of her husband’s determination to continue his fight.

He wants professionals such as doctors to help him end his life, without them having the fear of prosecution.

The man, who can only be known as Martin, also has “locked-in” syndrome after a stroke four years ago.

Lawyers will hear in the next few weeks whether they are allowed a full hearing at the Court of Appeal.

Martin, 47, is seeking professional help – possibly resulting in a trip to the Swiss organisation Dignitas – to end his life.

His wife would be unlikely to be prosecuted if she assisted his suicide, but she cannot bear to help him.

She told BBC News: “I don’t want him to die but I’ve got to respect his wishes.

“As much as I might not want him to go, that’s his decision. I could never end somebody’s life. That’s who I am.

“Some people with locked-in syndrome are able to thrive on what life they have – but certainly for Martin and Tony, it’s not what they wanted. It’s very difficult for them to cope with living that life.

“He has the option of refusing food. Since he’s known that the courts would allow that and not make him be force-fed, he has far more of an inner peace. But that would be a traumatic way to die for him and those around him.

“We all have choices in life but he’s not able to have a choice or to have a say in how his life ends.

“For Martin, his quality of life is not what he wants and he can’t see a way out of that.”

Reduced to tears

Tony Nicklinson was seeking permission for a doctor to be able to lawfully terminate his life in the UK, by creating a new defence for murder.

Martin wanted a change in prosecutors’ guidance, which is much less tolerant of anyone acting in a professional capacity. Currently helping someone end their life is a criminal offence which can lead to 14 years in prison.

Last month, the High Court turned down the bid by both men to change the law, saying it was for Parliament – not the courts – to decide these matters.

Doctors’ leaders welcomed the ruling. So far, neither MPs nor members of the Scottish Parliament have shown an appetite to change the law.

Campaigners against assisted suicide fear that any change in the law would erode the rights of other severely disabled people.

Tony Nicklinson died six days after the judgement. He was deeply upset by the ruling, and contracted pneumonia after refusing food.

Martin’s wife, who is a nurse, spoke of how her husband – previously a “butch” man – was often reduced to tears since suffering the brain stem stroke.

He spends his days watching DVDs of action films and rugby matches, and listening to music.

He cannot speak and is fed by people putting food into his mouth. He is able to swallow.

Decision expected

His wife broke down as she said: “It’s hard because it’s tiring. Every day is difficult at home – you never know what the day is going to bring. Life is very stressful.

“We have to have a 24-hour care package for Martin because he needs someone watching him or being there the whole time to make sure he’s okay.

“I think Martin just finds he’s a burden to everyone around him because he’s so reliant on other people to care for him, even down to silly little things like scratching his nose.

“You can’t even have a proper conversation, or share things like we did before the stroke.

“I don’t think we’re going to go down the road that’s often brought up, that people are going to be coerced into ending their lives.

“I think there has to be strict rules and regulations. It has to come from the individual themselves if they have the capacity, which Martin does, on the decision to end his life.”

Martin’s legal team has applied for leave to appeal. It expects a decision in the next few weeks.

His solicitor, Rosa Curling, of Leigh Day and Co, said: “Martin needs to know what his options are. We’re seeking better clarification on the guidelines from the Director of Public Prosecutions.

“At the moment, there’s a real risk that a professional who helps Martin would be prosecuted.

“The courts have said that if he chose to stop eating, he would be given pain relief to help him. But he wants to keep open the option of going to Dignitas.”

Seb White, 4, Is M&S New Back To School Model With Downs Syndrome

September 20, 2012

This is a big step forward for those who wish to see disability represented on the high street, and for disabled models of all ages. I send sincere thanks to Marks & Spencer, and hope Seb White will set a trend for their future and that of the British High Street as a whole.

The mother of a boy with Down’s syndrome has persuaded Marks & Spencer to rethink the models it uses to sell children’s clothes.

Caroline White, from Bath, noticed the lack of diversity in retailers’ Back to School campaigns while out shopping for her four-year-old son Seb.

Now M&S has taken on board the comments she made and Seb has become the retailer’s latest model recruit.

Royals Open New Rehab Unit For Injured Servicepeople

September 19, 2012

The Prince of Wales and Duchess of Cornwall have opened a new wing at the Headley Court military rehabilitation unit in Surrey.

The couple officially unveiled the £16.9m Jubilee Rehabilitation Complex at the centre near Leatherhead.

It has a therapy building, radiology department and a flat where patients can learn to live independently.

Prince Charles and Camilla also met injured servicemen and women who are being treated at Headley Court.

Staff and crowds of children waved flags and cheered as the royal couple made their way round the grounds of the centre.

The official opening on Wednesday was also attended by armed forces personnel and veterans who competed in the London 2012 Paralympic Games.

The Ministry of Defence (MoD) is fully funding the wing, which also includes a second prosthetics department, radiology department and an open-plan gym.

Headley Court Commanding Officer Gp Capt Clare Walton said: “On behalf of all the patients and staff at Headley Court I would like to thank their royal highnesses for officially opening the Jubilee Rehabilitation Complex.

“I know the new facilities will enable our staff to continue to provide the very best of care to our patients and to keep Headley Court at the forefront of rehabilitation and prosthetics.”

In June 2010 Prince William opened the Help for Heroes Rehabilitation Complex at Headley Court, which contains a swimming pool and gym complex.

Australia Refuses Immigration Visa To Autistic Girl, 12

September 19, 2012

This is not at all a fair or right rule. However, sadly, I have covered a similar case before. Canada also unfortunately refuses immigrants with disabilities.

An Oxfordshire family have spoken of their distress at being turned down by Australian immigration because of their autistic child.

Adrian and Julie Scott, from Didcot, want to move with Niamh, 12, who has severe autism and is profoundly deaf.

The Australian Department of Immigration and Citizenship said families who required health or community care could be refused.

The Scotts said they thought living in Australia would have benefited Niamh.

Their twin sons already live on the continent, and Niamh’s grandparents emigrated there almost 20 years ago.

Mrs Scott said: “Anybody who’s got a child would do anything to make their child’s life the best they possibly can for them.

“We didn’t choose to have a disabled child. Why shouldn’t she still have as much of a life as anybody else?”

‘Reducing stress’

The Australian Department of Immigration and Citizenship said it did not refuse applications based on disabilities, but it took into account public expenditure on “health care and community services in short supply”.

It added: “For most permanent visas, if one family member fails to meet the health requirement, the visa cannot be granted to any of the migrating unit.”

Niamh’s grandmother, Ann Styants, said she was “devastated” when she heard Niamh’s permanent visa had been denied.

She said: “The only illnesses she ever has now are what any child gets.”

Richard Mills, of Research Autism, said there was little evidence that a change of climate helped autism, but a “change in sensory environment is very important in reducing stress both on the child and the parents”.

Mrs Scott said she would fight the decision.

“I have to believe I’ll get there, for her,” she added.

What Will The English Baccalaureate Mean For Students With Special Educational Needs?

September 19, 2012

In an email to Liberal Democrat party members on Monday night seen by Same Difference, David Laws MP wrote that the new English Baccalaureate qualifications will ‘include new provision for the very small number of children, including those with SEN, who don’t sit GCSEs at the moment.’

Full details of this new provision have not yet been revealed. The wish to include provision for children who do not sit GCSEs at 16 in a new exam system is a very positive thing. There are some children who are unable to sit GCSEs, and a number of them do have some form of Special Educational Needs.

However- the question that campaigners for inclusive education have been asking since Monday- the question that has, until now, not been answered in the press, is: what will the new qualifications mean for children with physical disabilities and/or SEN who do currently sit GCSEs at 16?

Yesterday, the British Dyslexia Association said the new qualifications could discriminate against teenagers with dyslexia or other learning difficulties. The qualification will place emphasis on exams over coursework, and these exams will be sat once and for all at the end of two years. This, the Association claimed,  will be likely to cause extra stress which could disadvantage candidates with some learning difficulties and damage their chances of going on to higher education.

The Association’s chief executive, Kate Saunders, said coursework is generally a much fairer method of assessment and constitutes a reasonable adjustment for dyslexic students. It must be considered that this could also apply to students with severe physical disabilities. Many such exam candidates currently require large amounts of extra time in order to complete exams to the best of their intellectual abilities. Extra time has been provided to exam candidates with all disabilities and learning difficulties for many years.

It could be argued that no teenager likes exams, but they are a necessary part of life. However for intelligent exam candidates with learning difficulties who experience increased stress under pressure, it would be reasonable to question the fairness of placing them under the very high level of pressure experienced by a teenager who wishes to pass an exam without which they will be unable to take their next step in life. It would be reasonable to question the real need to do so.

For intelligent exam candidates with severe physical disabilities, it could be argued that exams are even more difficult. Sitting for long periods of time can be painful for such candidates. Some require rest breaks, which are currently provided but make the exam last even longer when included in the period of time spent completing it.

Some candidates with physical disabilities are unable to communicate verbally. They use methods of communication which require constant movements. They tire easily, and find every movement painful. Campaigners have argued for several years that rather than sitting exams, such candidates should be assessed only through coursework, as this can be completed over a longer period of time under the supervision of parents and teachers who have a clear idea of the candidate’s level of intellectual ability.

Rather than placing less emphasis on coursework, or even abolishing it altogether, campaigners for inclusive education would be very pleased to see greater emphasis placed on coursework for 16 year olds.

If the English Baccalaureate is truly going to be the ‘exam for all abilities’ that David Laws MP sets out in his recent email, then it must be made fully accessible to candidates with special educational needs and physical disabilities. Otherwise, campaigners for inclusive education fear that the new system might take us back several years, to a time when even those disabled children who had the intelligence were prevented from sitting age appropriate exams.

Daniel Roque Hall Case Highlights The Limitations Of Prison Care

September 19, 2012

Lawyers acting for a severely disabled prisoner who was rushed from jail to a life-support machine in hospital, are asking the high court to rule he should not be sent back to a prison that cannot meet his medical needs.

Daniel Roque Hall has Friedreich’s ataxia, a degenerative disease, that affects co-ordination of the whole body. It causes a heart defect which requires constant monitoring, and diabetes.

Hall, 30, is a wheelchair user with a life expectancy of 35 to 40 years. In July, he was sentenced to three years’ imprisonment, after pleading guilty to importing two and a half kilos of cocaine into Heathrow. The drugs, hidden in his wheelchair, had been smuggled in from Peru where Hall and a carer had been on holiday.

The judge accepted that Hall had been “groomed and manipulated” by drug dealers and, aware of his condition, sought assurances from the prison service that Hall’s complex medical needs would be met in custody. The governor of Wormwood Scrubs, in west London, assured the judge that the prison would provide the round the clock care and monitoring that Hall requires, as well as the complex stretching programme needed to keep him stable. This was despite prison inspectors last year finding “little progress in support for men with disabilities” and expressing particular concern over the “lack of systematic identification and help for prisoners with disabilities” at the prison. They described the inpatient unit (where Hall was held) as “an unsuitable environment for those recovering from physical illness”.

According to Hall’s family and lawyers, within hours of admittance to the prison he suffered a spasm and fell from an examination couch, sustaining a head wound. He was taken in handcuffs to a care home for elderly people. Staff there were not given full details of his medical requirements, which included Warfarin, prescribed to thin his blood.

Back in Wormwood Scrubs, Hall suffered further spasms and says he was constantly denied his full medication. The two constant carers he needs, in case of spasms, were not supplied, nor were the stretching exercises.

Hall’s condition deteriorated rapidly and in the early hours of 23 August he was rushed to University College Hospital, London, and placed on a life support machine. A consultant at the hospital said Hall’s heart had been “stunned” by his treatment at the prison. His GP says his life will be threatened if he is sent back to prison.

No longer on a life support machine, Hall remains in hospital while his lawyers seek a judicial review of his treatment, and campaigners, including the poet Benjamin Zephaniah and MP John McDonnell, have signed an open letter printed in the Guardian calling for him to complete his sentence at home.

Hall’s claims, though shocking, are not unique. Despite the Paralympics helping to challenge myths and raise awareness about disability, the neglect of disabled people in prison is well documented.

Estimates of the number of disabled prisoners vary. The prison service database records a figure of 5% (around 4,500 prisoners), but inspectorate surveys record 19% (around 16,000). A Ministry of Justice (MoJ) survey earlier this year, found 18% of prisoners interviewed had a physical disability of some kind. The dramatic rise in the number of older prisoners in the system over the last decade is likely to further increase the disabled prisoner population.

Yet a joint report by the Inspectorate of Prisons and Care Quality Commission in 2010 found an ageing prison population, where “disabilities were not being adequately dealt with and many prisons not having a disability policy”. It also reported that it was “rare to find any form of needs analysis or consultation with prisoners to help establishments carry out their duties under the Disability Discrimination Act”.

In 2006, the NHS took over responsibility for healthcare in prisons from the prison medical service. Governors were mandated to appoint a disability liaison officer (DLO) whose job it is to assess the prisoner’s needs and link him or her to the appropriate channels in the prison, but last year the rules changed and it is now up to governors to decide whether a DLO is required, or if existing managers and staff can do the job. The MoJ says it cannot say how many prisons have DLOs.

Many DLOs told former chief inspector of prisons Anne Owers that they did not have enough time, support or training to do their jobs. She also noted in her 2010 annual report that prisoners with mobility difficulties suffered considerable disadvantage because of the refusal by ordinary prison staff to push wheelchairs without training. “While some prisons had clearly identified schemes for assisting disabled prisoners in wheelchairs, some staff still declined to do so,” says the report.

None of this comes as a surprise to the Prisoners’ Advice Service (PAS), a charity that takes up prisoners’ complaints about their treatment inside prison. It says it is inundated with calls from disabled prisoners claiming they are not receiving appropriate treatment. Some case notes make harrowing reading: cells occupied by disabled prisoners with no wall bars and inmates having to drag themselves across the floor and falling frequently; PAS “having to make a fuss” to get inmates supplied with basic needs, such as walking sticks, which are then taken away when a prisoner moves prison; and an incontinent prisoner with mental health problems sleeping naked on a urine-soaked mattress.

PAS caseworker Nicola Gregory recalls visits to jails to meet disabled prisoners. On one occasion, a prisoner failed to turn up and an officer pointed to his lack of interest. However, the meeting room was on the fourth landing, accessible only up narrow spiral stairs, which seemed to escape the officer’s notice. PAS has advised a wheelchair user who lost privileges for not returning a library book to the prison library, which was on an inaccessible third-floor landing.

Disabled prisoners reported similar experiences of neglect to the Prison Reform Trust (PRT). In a 2010 report on older people in prison, one inmate said he could not get his wheelchair into his cell and had to “try to get from the entrance to my bed”; he had been told officers are not allowed to push him.

Another prisoner who uses two walking sticks says he couldn’t have a shower because “I might slip and there is nothing to hold on to, or chairs to sit on”. He adds: “Usually a friend helps me because there seems to be no officer or nurse willing to help.”

The PRT found few jails had a disability policy, or established ways to help staff identify the needs of disabled people, and that health and social care provision is patchy and often dependent on an individual officer or governor’s motivation.

PRT director, Juliet Lyon, says the justice system is putting punishment before humanity and common sense. “Locking up severely disabled men and women without proper treatment and care puts lives at risk. At best, imprisonment for the disabled amounts to a double punishment.”

On 8 September, campaigners calling for justice for Hall held a protest outside Wormwood Scrubs. They fear sending him back to prison would be as good as imposing a death sentence on him and want him to be allowed to serve his sentence at home. “He was given a three-year sentence, not a death sentence,” say the campaign posters.

The MoJ says: “The claimant’s allegations are currently before the courts and will be resolved in that forum.” As for the level of care provided to disabled prisoners, it says: “We have a duty of care to those sentenced to custody by the courts. As part of that duty of care, we ensure that prisoners have access to the same level of NHS services as those in the community.”

Restaurant Says Wheelchair Using Man Is Safety Hazard

September 19, 2012

A man has spoken of his disgust at being branded a health and safety “hazard” because he uses a wheelchair.

Door staff refused Luke Kenshole entry to the first floor of Cafe Mambo in Torquay, Devon, on Saturday.

“What’s the point of being inspired by the Paralympics if you can’t go out for a drink with your mates,” he said.

But Lifestyle Hospitality Group which operates the venue said safety was paramount and staff had acted in an appropriate manner.

Mr Kenshole, 29, from Paignton, was with a group of nine able-bodied friends, including Emily Rookes, who told the door staff they would be responsible for him and were happy to carry him up and down the stairs.

“They told him he was a health and safety hazard and he couldn’t go upstairs,” Ms Rookes said.

“But even if they’d had a lift, you wouldn’t be able to use it if there was a fire.”

Mr Kenshole said the door staff should have treated him with dignity.

“They should have taken me aside and explained it discreetly instead of shouting it in public that I was a safety hazard,” he said.

“I understand they had their reasons, but they’re unacceptable in my eyes and the manner in which they conducted themselves was unacceptable – I think I deserved to be treated with dignity.

“I’m nearly 30, I’m used to going out and I’m quite confident, but if someone disabled who’s just started to go out socially, something like this could really knock their confidence.”

Policy review

A spokesperson for Lifestyle Hospitality said Mr Kenshole was not “refused entry”, as he was told he could be accommodated in the club’s ground floor Beach Hut, which has disabled access and facilities.

But Mr Kenshole said the Beach Hut was just a bar.

“There’s no music downstairs and we’d been out for a meal and wanted to have a bit of a dance,” he said.

“I’ve been to nearly every club in Torbay and never had problems before.

“Not many nightclubs have disabled facilities, but my friends are always willing to go the extra mile for me – and I trust them with my life.

“Surely I’m no more a risk than someone who’s completely intoxicated.”

Apology offered

A statement from Lifestyle Hospitality said: “Whilst we want to welcome all our customers and give them a good experience, we have to be mindful of their comfort as well as health and safety issues.

“Our ground floor Beach Hut has disabled access and facilities but regrettably because of the layout and age of the building on four floors and several more levels, we are unable to install a lift to higher levels.

“We believe our staff dealt with the matter appropriately and responsibly. If Luke feels he had a negative experience at Mambo, then we apologise. But the safety of all our customers is paramount.”

Mr Kenshole said it was unlikely he would return to Cafe Mambo.

“I really don’t want this to have a negative effect on Mambo’s business, because it’s supposed to be a great venue, but I would very much like them to review their policy,” he added.

Husband Who Assisted Suicide Says Attitudes Are Changing

September 18, 2012

A husband who once faced the threat of prison after helping his wife to commit suicide believes that attitudes are changing.

Thirty years ago Barrie Sheldon, who lives in Suffolk, helped his wife Elizabeth prepare drugs for an overdose.

Now he believes public attitudes in favour of the right to die are slowly changing.

Local Newspaper Editor Says Motability Users Should Hang Heads In Shame

September 18, 2012

As if his comments aren’t ridiculous enough, he has a disabled son! Unbelievable. The article doesn’t say what the boy’s disability is but I find it so sad that the parent of a disabled child can reveal such views to the general public.

The editor of a local newspaper has angered disability hate crime campaigners by telling users of Motability vehicles that they should “hang their heads in shame” in comparison with medal-winning Paralympians.

Two editorials written in consecutive weeks by Toby Hines, owner and editor of the weekly Helston News and Advertiser in Cornwall, are the first examples seen by Disability News Service (DNS) of public figures using the exploits of Paralympians to attack disabled benefit claimants.

In an editorial on 4 September, Hines attacked “fake disabled” people, who he says have “a Motability car, blue badge, extra £100 per week of benefits, got a limp or mahoosive (sic) fat gut”.

He said such “fake” disabled people “do not work or contribute to society one iota and just sponge and bitch all day while sitting at home eating cream cakes watching Loose Women”, and compared them with Paralympians, who were “genuine people with some bad disabilities but not giving into them and actually trying to overcome them”.

Hines, who has a disabled son, added: “You can tell someone has a real disability as they deny it.”

In the second editorial, this week, he praised former racing driver Alex Zanardi, who won a Paralympic hand-cycling gold medal last week, and added: “Fascinating comparison to the people I see climbing out of motability (sic) cars in town and at Tesco who should hang their heads in shame.”

Steve Paget, chair of Disability Cornwall, said his organisation had complained several years ago to Hines about his “vitriolic and misinformed” editorials.

He said: “Having an understanding of one disability, whether yours or your child’s, does not give you a deeper insight into other conditions, so it would be interesting to know how Mr Hines feels he can spot what he terms a ‘faker’?

“In all the years that Disability Cornwall have been working with local disabled people, we can only ever recall one solitary case where it was felt the person we were advising may have had a somewhat dubious claim for a disability benefit.”

He added: “The next edition of our lifestyle magazine, Discover, features the alarming fact that hate crimes against disabled people are soaring across the country.

“Ill-judged comments such as that peddled by Mr Hines is just the sort of misinformed hysterical rhetoric we never need to see in print. A retraction is the very least Mr Hines should now be considering.”

Katharine Quarmby, a coordinator of the Disability Hate Crime Network and author of Scapegoat, a ground-breaking investigation into disability hate crime, said it was “extremely worrying” to read the two editorials.

She said: “Journalists should understand that they have a responsibility to report stories without sensation and with context – for example, pointing out that the levels for disability benefit fraud are extremely low.

“I am worried that such reporting could incite violence against disabled people and I would encourage this journalist to refrain from making claims about fraudulent claimants he cannot substantiate…”

Hines told DNS he was “quite notorious” for having a low tolerance of “false claimants”, but said he should have made it clear these were the people he was attacking in his second article.

He confirmed that he was not medically qualified, and accepted that many people with Motability vehicles had jobs.

When asked whether he was aware that many Paralympians also have Motability vehicles, he said: “I have no problem with anyone with a disability who takes what they are entitled to.

“I would be angry with people who swing the lead, exaggerate the situation, take benefits where they are probably not quite entitled or not entitled to, but then cast doubt or make it difficult for people with genuine situations.”

He said he would be “very careful not to repeat” his comment about people with Motability cars having to “hang their heads in shame”, which he said was “a mistake” that he would correct in the next edition of his newspaper.

He added: “Obviously, any Paralympian isn’t [in] a fake situation. They are a genuine illness person.”

Residential College Places For Young Disabled People At Risk

September 18, 2012

Born with a rare neurological condition, 19-year-old Joe Rae has learning difficulties and problems with speech and motility. He is a student at National Star College in Cheltenham, a specialist residential college for young people with complex physical disabilities, where he has hydrotherapy, physiotherapy, lessons in music, dance and life skills and, in his mother’s words, has made “extraordinary” progress.

“I got a phone call [from college staff] one night to say that he had been watching television and suddenly wasn’t there,” says his mother, Edel Rae. “He had pulled himself up on his walking frame – which, in itself, took great physical strength and determination – and taken himself off to his bedroom. It may sound like a small thing, but making a decision to remove himself from a room – something he had never done before – was a huge step forward for Joe.”

Education like this doesn’t come cheap. There are 61 specialist further education colleges in the UK – most offering residential care – and a place at a college like National Star can cost more than £60,000 a year, and up to £120,000 for students with very complex needs.

As a result, many parents already face a long, hard battle to secure financial support for their child to attend a specialist college, particularly as many are asking for funding for their child to study in a different local authority. But changes to funding for the education of young people with special needs, due to come into force next year, mean things could soon get worse.

Under the new funding arrangements, local authorities will no longer have to “ringfence” funding for school leavers with high levels of need – those identified as needing financial support for their education that is likely to exceed about £10,000 a year. Instead, they will have a budget for all children and young people with high levels of need up to the age of 25. There are fears in the sector that resources will not be directed where they are needed most.

One concern is that with the compulsory participation age due to rise to 17 from next year (and 18, from 2015), giving local authorities a statutory duty to provide education for that age group means there will be “less in the pot” for older learners, as Alison Boulton, chief executive of the Association of National Specialist Colleges (Natspec), puts it. She is also worried that some local authorities, which, like most public sector organisations are facing considerable budget cuts, will prioritise saving money over meeting the needs of young people. She says: “Some local authorities’ attitude is ‘we’re not interested in the Rolls-Royce, we just want something that goes’.”

Typically, local authorities will offer young people like Joe three or four days of education at a local provider, often travelling by taxi or specially arranged transport.

And as Rae found out, there can be a big difference between what parents and local authorities deem suitable education for a young person with disabilities. She recalls a “heartbreaking” visit to a local day centre, which catered for an age range of 18 to 80, that her local authority argued could provide for Joe’s needs. “I said: ‘I don’t think it’s appropriate for 18-year-olds to be with 80-year-olds – people with Alzheimer’s – or vice versa.’ When my other son left school, nobody suggested it would be OK to mix with 80-year-olds so why is that OK for Joe? While the staff were doing their best, there was nothing in the way of learning or age-appropriate activities.”

A residential college placement gives students the opportunity to develop social skills and independence and, crucially, to mix with others like themselves. Kathryn Rudd, principal of National Star College, recalls one student saying: “Coming here, for the first time, I haven’t felt ‘special’. I didn’t have to get on a special bus to get here, I don’t have to do ‘special’ things … I’m just ‘normal’ here.”

For some young people, this can make a huge difference – helping them to develop the skills to volunteer, work or live semi-independently, something they are far less likely to do if they are “coming home from college in a taxi and sitting at home on their own all evening,” says Rudd.

While some local authorities are clued up about the benefits of specialist colleges, others lack understanding and expertise. One parent – who did not wish to be named for fear it would jeopardise the funding bid for her son – told the Guardian: “My local authority told me I only wanted my son to go to a specialist college because I couldn’t handle having him at home … that really hurt. Like any parent, I just want the best possible education for my son.”

According to Anne Price, director of education and life skills at David Lewis College in Cheshire, and Natspec chair, the experience is typical of the “postcode lottery” faced by parents. “If you’re in a good local authority, with good staff, you’ll get a good deal, and if you aren’t, you’ll get nothing. I have never known it as bad as this, ever.”

Placing young people who would benefit from specialist further education in local colleges or training providers may help local authorities make short-term savings, but, in the long term, it can prove more costly. A report published by the National Audit Office last year showed that equipping a young person with moderate learning disabilities with the skills to live semi-independently – rather than in fully supported housing – could reduce their lifetime support costs by around £1m.

And as Jane Stone, whose daughter Kate has Down’s syndrome, found out, even the short-term savings can be negligible. After being turned down for funding for a specialist college, on the grounds that it was too expensive, Kate was offered a few hours at a college more than 10 miles away. Stone and her husband – both accountants – carried out a financial comparison of the costs of educating their daughter at a specialist college compared to a more local provider. “We did a spreadsheet that showed if she stayed at home, social services would have to look after her from 10am-7pm, because we are out at work. So when you start adding up the cost of social care support at £20 an hour, taxi fares to the college, respite care … it doesn’t take long to stack up. That was basically how we won [their case for her to go to a specialist college] because we were able to show that [the alternative] wasn’t cheaper.”

Stone readily admits that persistent parents who make a fuss can be successful in overturning local authorities’ decisions. Time and money help too. As well as countless hours spent reading reports, writing letters and meeting with council officials, Stone spent “two or three grand on a lawyer, just to write some sniffy letters”. Rae started a fundraising organisation – the Joe Rae Trust – and organised coffee mornings, talent shows and sponsored walks to raise funds to help fight Joe’s case (and to put towards his college fees if the local authority refused funding).

But under the new, even more complicated funding arrangements, there is a concern that only the most sharp-elbowed parents will be able to find their way around the system. “What happens to those young people who haven’t got someone behind them fighting every step of the way and threatening to take everyone on the planet to court?” asks Rudd.

And, if local authorities are increasingly reluctant to hand over the cash to fund young people to study at specialist FE colleges, it could threaten the colleges’ very existence. “We just don’t know what this new system will be like … but it has the potential to destabilise the future of specialist provision,” she says.

A DfE spokesperson said the idea of the new policy was to make sure councils worked with health services. “We will also be offering young people and parents the option of a personal budget so that they can have more control over how their support is delivered.”

Cancer Patients WCA Plans Altered

September 17, 2012

Fewer cancer patients will have to look for work while receiving treatment, under revised proposals from the Department for Work and Pensions.

The change is part of the coalition government’s response to a review of work capability assessments.

It said people “awaiting, receiving or recovering” from chemotherapy or radiotherapy could now be treated as having a “limited capacity” for work.

They would continue to receive sickness benefits, without having to seek work.

The time limits on employment and support allowance payments for people undergoing treatment for cancer were too short, and patients were wrongly being classed as fit to work before they had recovered, according to cancer charities.

The work capability assessments were reviewed by Prof Malcolm Harrington.

Hearing Aids For Deaf Soldiers

September 17, 2012

British soldiers whose hearing has been damaged in battle are to be given state-of-the-art devices to reduce their deafness.

Troops are often exposed to loud gun blasts or explosions which are far louder than the noise level of 85 decibels where damage can occur.

But now service personnel who have been medically discharged due to damaged hearing are to be offered new hearing aids to help them back into civilian life.

As well as being given the devices from manufacturer Phonak, troops will also see specialists from the Association of Independent Hearing Healthcare Professionals (AIHHP) about their condition.

Kathie Knell, head of welfare at charity Help for Heroes, said: “The new partnership with Phonak and AIHHP is a very positive step which will help a lot of returning troops.

“Addressing hearing loss gives people the ability and confidence to hear clearly and improve their overall quality of life.”

Disabled People Feel Undervalued In Society Even After Paralympics Finds Poll

September 17, 2012

Three quarters of British disabled people feel undervalued by society despite the positivity around the Paralympics, research suggests.

Before the London 2012 Paralympic Games, 71% of disabled people said they did not feel valued by the general public. This sentiment increased to 76% by the end of the Games, according to research company Kantar.

The snapshot survey, which questioned 351 people with disabilities before the Games and 305 people afterwards, also found that three quarters of disabled people think they should be represented better in the media and on television.

Dr Michelle Harrison, head of political and social for Kantar, said: “We did some research before and after the Games looking at the way in which British people view the community of people with disabilities.

“People without disabilities held up people with disabilities in a very strong light but people with disabilities did not feel that.

“They did not feel that they are valued by the general public – that sentiment did not change during the Games.

“Britain does see itself as a very caring and supportive society but that does not translate into the day-to-day support that the community of people with disabilities feel.”

Public Consultation On Babies With Three Parents To Begin

September 17, 2012

Any thoughts on this, readers?

A public consultation has been launched to discuss the ethics of using three people to create one baby.

The technique could be used to prevent debilitating and fatal “mitochondrial” diseases, which are passed down only from mother to child.

However, the resulting baby would contain genetic information from three people – two parents and a donor woman.

Ministers could change the law to make the technique legal after the results of the consultation are known.

About one in 200 children are born with faulty mitochondria – the tiny power stations which provide energy to every cell in the body.

Most show little or no symptoms, but in the severest cases the cells of the body are starved of energy. It can lead to muscle weakness, blindness, heart failure and in some cases can be fatal.

Mitochondria are passed on from the mother’s egg to the child – the father does not pass on mitochondria through his sperm. The idea to present this is to add a healthy woman’s mitochondria into the mix.

Two main techniques have been shown to work in the laboratory, by using a donor embryo or a donor egg.

However, mitochondria contain their own genes in their own set of DNA. It means any babies produced would contain genetic material from three people. The vast majority would come from the mother and father, but also mitochondrial DNA from the donor woman.

This would be a permanent form of genetic modification, which would be passed down through the generations.

It is one of the ethical considerations which will be discussed as part of the Human Fertilisation and Embryology Authority’s consultation.

The chair of the organisation, Prof Lisa Jardine, said: “It is genetic modification of the egg – that is uncharted territory. Once we have genetic modification we have to be sure we are damn happy.”

She said it was a question of “balancing the desire to help families have healthy children with the possible impact on the children themselves and wider society”.

Other ethical issues will also be considered, such as how children born through these techniques feel, when they should be told, the effect on the parents and the status of the donor woman – should she be considered in the same way as an egg donor in IVF?

It is not the first time these issues have been discussed. A report by the Nuffield Council on Bioethics said the treatment was ethically OK, but the group Human Genetics Alert said the procedure was unnecessary, dangerous and set a precedent for genetically modified designer babies.

The consultation will run until 7 December and the conclusions will be presented to ministers next spring.

Research into the area is legal in the UK, but it cannot be used in patients.

However, treatments in IVF clinics will be years away even if the public and ministers decide the techniques should go ahead. There are still questions around safety which need to be addressed.

One of the pioneers of the methods, Prof Mary Herbert from Newcastle University, said: “We are now undertaking experiments to test the safety and efficacy of the new techniques.

“This work may take three to five years to complete.”

Paralympic Swimmer Jessica Jane Applegate Welcomed Home To Great Yarmouth

September 17, 2012

Norfolk’s only gold medallist from London 2012 has paraded through her home town in a seafront land-train.

Paralympic swimmer Jessica-Jane Applegate, from Belton, Great Yarmouth, won the women’s S14 200m freestyle.

The 16-year-old, who has Aspergers Syndrome, was applauded by hundreds as she travelled along the Golden Mile to the market place in Great Yarmouth.

She then appeared on the balcony of the Town Hall with the mayor Colleen Walker, where she showed off her medal.

Councillor Walker said: “We had people jumping out in front of us to shout well done to Jessica.

“It was phenomenal. It’s the goodwill factor and Jessica’s our goodwill.

“There’s going to be a new generation of children who will aspire to be just like Jessica and what more can you ask for?”

Technology That Gives Disabled People The Freedom To Speak

September 17, 2012

I am sitting staring at a computer screen. So far so banal, except that this screen features a red dot that, by some technological magic, tracks the movement of my eyes: I can place it where I want on the screen just by looking. The bottom of the screen portrays a keyboard, although I could, if I chose, select other screens made up of various vocabulary, grammar and expression-based menus, which, for experienced users, would doubtless speed things up.

Because this is painstaking. I look at a letter, and the red dot sits on it. I continue staring, and the dot blinks, twice. The letter then pops up at the top of the screen. I move on to the next letter (or, more often, the backspace).

It gets easier: there’s predictive text, like on a mobile phone, so I stare at the word I want, which gets added to my sentence. Eventually, the phrase is complete. I stare at it and it blinks. “What an amazing machine,” says a cool, synthesised voice. “Rather let down by its user.”

This is eye-gaze technology, at the leading edge of a fast-evolving and – for those who need it – vital field known as augmentative and alternative communication (AAC), plus the closely related assistive technology (AT). Without it, we would have been denied access to the remarkable mind of Professor Stephen Hawking (not to mention his starring role at the Paralympics opening ceremony). Nor would the locked-in syndrome sufferer Tony Nicklinson have been able to express so memorably – using eye-gaze – his despair at being refused the right to an assisted suicide. Hawking, with characteristic elegance, summarises its value: “Even more important than the freedom of speech is the freedom to speak.”

Most of us know nothing about it. Worse, says Anna Reeves of the ACE Centre, a national charity that provides independent AAC assessments, advice and training, “a lot of people who need it have real trouble getting it. The funding’s a mess. It falls between education and health, and most local authorities don’t have specific budgets for it.”

Yet AAC can be life-changing. Alan Martin, who developed cerebral palsy as an infant, was 31 before friends clubbed together to buy his first communication aid. “Before that,” he explains in one of several pre-recorded messages he can activate on his current machine, “I relied on facial expressions and gestures. It was very frustrating.”

Jovial and instantly engaging, Martin now runs his own company, Mouse on the Move, providing inclusive dance workshops for people with disabilities. To talk, and teach, he uses a wheelchair-mounted portable computer. He has reasonable control of his right arm, so uses a finger to press symbols on the screen that open up successive folders of images, words and frequently used phrases. He can also send emails and – an exciting new addition – text messages through a mobile phone connected to his computer. The whole system, Reeves says, cost around £8,000, and is in the middle of a spectrum of more than 100 different kinds of communication aids. (“Rubbish,” says Martin succinctly, when asked what he thought of his first device.)

At one end are simple picture books and communication boards from which users select letters, words, phrases, pictures or symbols to communicate their message. Simple electronic devices contain digitised speech messages pre-recorded by a family member or carer and activated by a big button. More sophisticated boards hold up to 32 symbols and attached messages.

But helpful as these devices are, they are limited to pre-set messages. Computer-generated speech lets users say what they want to say. A portable machine called the Lightwriter has existed since the 1970s, allowing people who can type to display messages on a screen and also speak synthetically. More recently, says Reeves, “we’ve seen some great apps being developed for iPads and the like. If they work for you, they’re brilliant. Especially for kids, because they’re cool.”

One, Proloquo2Go, even features a couple of authentic British children’s voices, as well as “sad” and “happy” versions of the same voice; until recently synthesised speech robbed users of accent, emotion and intonation. Alan, who was born on Merseyside and is a huge Liverpool fan, would love to be able to speak scouse.

At the top end are the systems used by Martin, Nicklinson and Hawking: fully functioning computers, controlled in any number of ingenious ways. Hawking now uses a muscle in his cheek; another system moves the mouse through minuscule lip movement. These systems are capable of emailing, texting and even opening doors, turning on lights and operating the telly.

There are, Reeves says, perhaps 260,000 people in Britain using AAC equipment, about 10% of them using this kind of hi-tech aid. Their conditions range from serious physical and learning disabilities through sensory impairment to autism, motor neurone disease, stroke and, commonly, cerebral palsy. “There are also many who are undiagnosed, who simply present to us with an inability to communicate,” she says. “It’s far more common than people think.”

Formed this summer by the merger of two separate charities to develop what would be, astonishingly, Britain’s first national AAC/AT service, the ACE Centre holds open information days, carries out in-depth needs assessments on individuals, and advises and trains children and adults with AAC needs as well as teachers and carers.

But it doesn’t have the money to provide actual aids for any longer than a short test period. Reeves wants to see a proper, secure, nationwide provision model that would ensure everyone in the country who needs communication aids gets them, preferably on long-term loan. “At the moment,” she says, “we feel a bit like ladies in a sweet shop. We say: ‘Look, this is all the lovely stuff available. Now fund it.’ Which is wrong: communication is not a privilege, it’s a fundamental right.”

For futher information visit: ace-centre.org.uk, communicationmatters.org.uk

Restaurant Demand £4 From Family Of Disabled Boy, 4, For Wheelchair Space

September 16, 2012

What on Earth?

GRAN Carol Milne splashed out on a weekend caravan break at a holiday park as a treat for her family.

She wanted to spoil grandchildren Ben, six, and four-year-old Max who is severely disabled, confined to a wheelchair and fed through a tube.

But she was horrified when a restaurant at Haggerston Castle demanded a £4 payment to have Max on the premises as he would not be eating.

Furious Carol, 54, said: “Max can’t eat as he can’t swallow. He doesn’t take anything by mouth. He is fed through a PEG, a tube in his stomach. He can’t sit up on his own and can’t walk or talk.

“We did explain this to the restaurant when we phoned to book, but they insisted that even if he couldn’t eat, we would still be charged for wheelchair space.”

Carol, of Alloa, travelled to the park near Berwick-upon-Tweed last weekend with daughter Kari, 32, her partner Gordon Taylor and the boys.

She complained directly to the management at the park and also to the restaurant, The Royal Garden.

Carol, a nurse, said: “The restaurant referred me to the terms and conditions printed on their menu. I demanded to see the manager but he wouldn’t speak to me.

“I couldn’t believe it. It ruined our weekend.”

I got on to Haven, who own the park in Northumberland, and they quickly apologised and offered the family a free break.

Haven said: “We were appalled to learn of your reader’s experience at Haggerston Castle.

“The Chinese restaurant is run as a separate business but located on our park.

“This is totally unacceptable and we will be speaking to the manager to ensure that this does not happen again. We apologise unreservedly to Carol and her family and will be offering her another break.”

Tory Peer’s Phone Hacked Because News Of The World Wanted To Prove His MS Was Alcohol Related

September 16, 2012

What on Earth? MS is never, ever, related to alcohol in any way. It is no one’s fault. Ever. It’s just a physical disability that comes later in life. After reading this, I’m even more glad the News of the World  has closed down than I was last July.

A former Conservative minister with multiple sclerosis who was allegedly hacked by the News of the World because they mistook his condition for excessive drinking is suing the Murdoch-owned newspaper group.

David Maclean, created a life peer in 2010 as Lord Blencathra, is among the latest tranche high-profile figures to launch civil actions against News International (NI).

A former MP, he was a whip in Margaret Thatcher’s government and a Home Office minister in John Major’s administration. He is among the estimated 130 names in a new list of hacking victims who have lodged claims against NI at the High Court.

Mr Justice Vos, the judge hearing the second wave of civil actions, set yesterday as a cut-off date for the latest claims. A trial date is expected to be announced soon for May next year.

Other names in the second tranche include the TV actress and former EastEnders star, Tamzin Outhwaite and the Cold Feet star James Nesbitt.

News International settled hacking claims with 50 victims earlier this year, including the Welsh singer Charlotte Church and the actor Steve Coogan.

It was announced this week that Hugh Grant, a prominent hacking campaigner, along with Ms Church’s family priest, Father Richard Reardon, are also suing NI. Fr Reardon is the first religious figure to lodge a hacking claim. Other high-profile names who have also initiated legal action against the now-defunct tabloid include Cherie Blair QC, the Manchester United striker Wayne Rooney, and the former pop star, Kerry Katona.

Commenting on the cut-off date, Steven Heffer, the solicitor who has led a substantial number of hacking cases, said, “We are about to learn one way or another who will be going down the litigation route.”

Lord Blencathra announced in 2003 that he had been suffering from multiple sclerosis since 1996. The neurological condition can lead to mobility and balance problems, and muscle weakness.

The Independent has learnt that a number of prominent names who were expected to lodge actions this week, have decided to avoid the publicity that usually comes with a high-profile court action.Legal sources claim NI is currently involved in a series of private negotiations aimed at settling hacking claims without using public courts in London or their own in-house compensation scheme.

The Metropolitan Police has had close to 400 recent enquiries from individuals seeking to learn if their phones were targeted and illegally accessed by the NOTW.

Despite the substantial number of individuals who have been contacted by Scotland Yard’s Operation Weeting – the unit investigating hacking – the Met’s Deputy Assistant Commissioner, Sue Akers, told the Commons last week that out of 4,744 potential victims identified in evidence, only 2,500 have been formally contacted so far.

India’s Paralympians- And Its Record On Disability

September 16, 2012

I’ve been sent a very interesting article on India’s Paralympic silver medallist and the country’s record on disability. Please click the link below to read it if you are interested.

rpgrahila.pdf – Adobe Acrobat Pro(1)

MPs Oppose Assisted Suicide Law Change

September 16, 2012

More than seven out of ten MPs refuse to back calls to legalise assisted suicide, according to a new poll.

The poll found that just 29% of MPs back moves to introduce assisted suicide, while 59% were opposed and 12% were undecided.

The survey of more than 150 MPs, conducted by ComRes, asked MPs from all parties about their views on assisted suicide.

Opposition was especially fierce in Scotland, where 86% of MPs opposed new legalisation.

The poll also found that a majority of MPs believe that if the current laws were changed there would be an increase in suicides and that vulnerable people would feel under pressure to end their lives while fewer than one third of MPs (30%) felt that changing the law would not lead to an increase in suicides.

More than seven out of ten MPs (72%) felt that if doctors were allowed to prescribe lethal drugs to patients on request, vulnerable people could feel under pressure to opt for suicide.

Almost 60% of those surveyed said legalising assisted suicide in the current economic climate would increase the risk that vulnerable people would opt for suicide so as not to be a financial burden upon loved ones.

Dr Peter Saunders, campaign director of Care Not Killing, said: “Any change in the law to allow assisted suicide would put pressure on vulnerable people to end their lives and these pressures will be particularly acute at a time when many sick, elderly and disabled people are struggling to make ends meet.

“Fortunately, a clear majority of MPs recognise this and agree that assisted suicide should not be legalised.”

The poll also found that majorities in all political parties disagreed with the statement that legalising assisted suicide is a key priority at the present time with just 5% of Labour MPs supporting this statement.

Ann Johnson- Diagnosed With Dementia At 52

September 15, 2012

Ann Johnson moved into a care home in Greater Manchester soon after she was diagnosed with dementia six years ago. Nothing unusual in that perhaps, except that Ann was then just 52 years old.

She has early-onset Alzheimer’s, something which affects 5% of people with the disease, and she is passionate about talking about it.

A former nurse and lecturer at the University of Manchester, she is no stranger to the disease. She and her mother watched her father suffer with Alzheimer’s over many years before he died.

As a result, she recognised the signs of the disease in her own symptoms.

“Alarm bells started ringing. I was getting lost for words, my short-term memory was bad and I kept getting lost when I went out. I was finding it difficult at work too, I would get stuck for words in class.”

Ann, now aged 58, retired from lecturing soon after her diagnosis.

Nowadays, simple things like counting money, telling the time and going to the shops are a challenge – but Ann refuses to let it get the better of her.

“I never hold back, I’m very open about it. If I’m buying a train ticket I say ‘Say things slowly please, so I can understand’.

“The trouble is you can’t see my problems. It’s not like having a broken leg. You would have no idea, so it’s difficult for people to understand.”

Speaking out

Ann is passionate about telling people what it is like to live with dementia. Since her diagnosis she has travelled around the country giving talks and speeches to health professionals and dementia patients alike.

She helped to launch the Department of Health’s dementia awareness campaign and has spoken at international conferences in London and Dublin, meeting the prime minister and many celebrities along the way.

Such is her commitment to the cause that Ann was recently awarded an honorary doctorate from the University of Bolton for her tireless campaigning for dementia sufferers, which she was very proud to receive.

“It means dementia is recognised. It’s important for people to know what it is, that everybody with it is different. I try to get people to understand it so they aren’t scared of it – so they love us for who we are.”

Scientists are trying to find out why more than 20,000 people in the UK get Alzheimer’s before they are 65. Some genes are thought to increase the risk of the disease taking hold, but more research is needed to explain why.

Nick Fox, professor of neurology at the dementia research centre at University College London, says research into early-onset Alzheimer’s is very important because understanding why people get the disease 20 or 30 years earlier than most people with Alzheimer’s may provide clues to the causes and the treatment of the disease.

In addition, people get more unusual variants of the disease when sufferers are younger.

“It’s not just memory, but also visual perceptual functions that are affected in these cases. They find spatial awareness difficult so they might keep clipping the wing mirror in their car, for example, although there’s nothing wrong with their eyes.”

In fact it’s the back of the brain which is affected, whereas the area critical to memory is the hippocampus, located in the middle of the brain.

What experts do know is that proteins start accumulating in these bits of the brain, causing the nerves to function less well and die.

‘Dreadful burden’

When it occurs at a relatively young age, Alzheimer’s is a particularly cruel affliction because it attacks people who are otherwise healthy, in employment and may have young children.

“Alzheimer’s disease is a dreadful burden at any time of life but people who present in their 50s and 60s have additional problems,” says Prof Fox.

“They can get into trouble at work if it’s not recognised. They may get into financial difficulties and they’re often looking forward to their retirement at that point.”

A diagnosis is difficult to make too. People with early-onset Alzheimer’s tend to be told they are depressed or stressed. When they are finally diagnosed, following delays and uncertainties, it may even be a relief for the patient and his or her family.

Although Ann is taking drugs to keep the disease from progressing, she knows she can’t turn back the clock.

“I don’t think about the future. It’s terrifying. I watched my father lose all his abilities. So I live from day to day. I make a list and get things done.”

Yet Ann is very comfortable with where she is and who she is. When she travels to give talks on dementia she is always accompanied by a friend. She is also lucky to be surrounded by caring people, loving friends and a secure place to live – which she says makes all the difference.

Joey Unwin Has Opened His Father’s Eyes

September 15, 2012

Some people would say that my second son is stupid. I understand what they mean. But it’s a word that I’ve come to use less casually than most. Just a few days before the opening ceremony for the Paralympic Games, he had a pretty significant birthday. But while most boys would have celebrated turning 16 by tasting the forbidden fruits of adult life and drinking too much cheap cider, Joey blew out the candles on his birthday cake with a giggle of excitement, jumped up and down with pleasure unwrapping the presents he’d been given and went to bed – entirely sober – at 7pm.

Because, you see, Joey is very different from most 16-year-olds. He has profound and multiple learning difficulties. His condition is still undiagnosed, although it’s almost certainly the result of a genetic glitch. He’s an attractive boy, with a shock of brilliant blond hair and a dazzling smile. But he’s very small, sometimes painfully thin and suffers from severe epilepsy. His coordination is poor and he’s extremely timid. He’s terribly vulnerable and when the epilepsy is bad, he’s pitiful. Most significantly, he has very restricted cognitive abilities and only a limited understanding of what is going on around him. He communicates in rudimentary Makaton sign language (and makes noises with a clear commitment to what he wants) but has never uttered a single word: not “mum”, not “dad”, nothing. What at first was termed “developmental delay” is now quite clearly a profound and serious learning disability.

Joey does learn, by modelling. I once spent the best part of a weekend showing him how to put on a sock (it’s counter-intuitive: you have to pull the heel in the opposite direction to get it round the corner). He can write a handful of words: but the great challenge is getting him to understand the relationship between the word and the object.

He’s pretty adept with an iPod and watches a handful of Pixar films over and over again (“a gold medallist in repetitive DVD watching”, as an uncle of his affectionately quipped). He listens to his four-year-old sister’s CDs but loses interest when it’s not playing one of his two favourite songs, and can’t be tempted to follow the books that we read her.

He loves pulling at willow trees and watching flowing water, and bounces up and down in delight at the sight of a passing train. He’s very sociable and quite capable of accosting complete strangers in the park to point out to them the trees, the trains and the water that he loves. And, gloriously, his brother enjoys making him laugh so much that he farts and sometimes wets himself.

He goes to a brilliant special school in Waltham Forest – Whitefield school is the sort of place that restores your faith in society. He attended a mainstream primary school for a few years but the great dream of inclusion requires things that are impossible in a busy state school. Securing the right statement of special educational needs required endless letters, phone calls, lobbying and legal advice – and when it finally came through I tried to imagine what it would be like for a child with less pushy parents (I’m proud to be one for Joey). And the enormous form (thankfully, about to change) required to claim disability living allowance is a masterpiece of bureaucratic hurtfulness. As Joey’s parents, it’s essential for our sanity to hang on to the positive as much as we can, but to make the self-evident case for support we have to stress how helpless, vulnerable and problematic Joey is on every one of its almost 50 pages.

Many different specialists have seen Joey, but there is a limit to what they can do, and one of the big challenges has been accepting that the medical profession does not have the answers. For the most part, they are careful to take into account his particular problems, but learning difficulties can make hospital appointments a harrowing business: just getting him weighed or taking his blood pressure is traumatic enough, but pinning him down while the anaesthetist at Great Ormond Street hospital held the gas to his face is something I never want to go through again. He had no idea what was going on, and we couldn’t explain a magnetic resonance imaging scan in terms that he could possibly understand. For a boy who hardly uses his vocal cords, his screams of terror were heartbreakingly loud: it felt as if I was holding his face under water.

The circle of Joey’s life is small: school, home, the park, the occasional holiday and his family. We have to be careful about what he can cope with: we couldn’t take up free tickets for the water polo at the Olympics because he can’t cope with loud noise and crowds. He’s terribly sensitive to other people’s moods and gets very upset if anyone around him is cross, even when it’s not directed at him. As he’s grown older, he’s become more emotional and, in moments, swings from extremes of giggling, laughing and cuddling to weeping, thrashing and floor-hugging despair. Being around Joey can be pretty exhausting. He needs very careful handling and many a plan has been scuppered because we expected too much of him.

People sometimes say sympathetically, “Oh, Joey is such a tragedy.” In some ways they are right: we all wish that Joey was developing along more normal lines. But it’s also counter-productive because it reinforces the negative and does nothing to help relieve that “tragedy”. Another reaction is, “Surely something can be done, let’s throw money at the problem.” Again, well-meaning as this undoubtedly is, it doesn’t help anyone, least of all Joey. The fact is, there are no miracle cures for Joey, no simple happy endings: it’s the people around him who need to change and the challenge of Joey’s disability will be with us all our lives.

Joey has had a huge impact on his large and, frankly, high-achieving family. We’ve all been through a range of emotions: confusion, denial and despair one moment; optimism, humour and determination the next. Looking after Joey on a day-to-day basis is very hard work – he can’t do much for himself, needs dressing and undressing, wears a nappy at night and can’t be left alone – and it’s important for everyone to get some respite.

But I was so moved watching him jump into the arms of his elder brother, an undergraduate at Cambridge, outside the main gate at King’s College: it felt as if the walls between knowledge and ignorance, pomp and simplicity, the elite and the dispossessed might, for a moment, come crashing down.

Our society has a confused attitude to learning disabilities, which are all too often swept under the carpet. Physical disability is much easier to relate to, and it’s hard to construct narratives of heroic struggle against the odds for people with learning difficulties. There are no obvious role models, no Stephen Hawking, no Oscar Pistorius and no Stevie Wonder, no high-functioning people with profound learning difficulties made Companions of Honour, winning Paralympic medals or being hailed as musical geniuses. And, despite the tremendous work done by Mencap and others, there are still issues with the way that they are treated by the rest of society. The Papworth Trust recently published research showing that 90% people with learning difficulties have experienced hate crime or bullying, and almost a third say that it takes place on a daily or weekly basis.

I was brought up to value language almost more than anything else and, as a theatre director, it’s integral to my work. I’m ashamed to say that as a young man I was completely ignorant of people like Joey and assumed that people as well-educated as me couldn’t possibly father children like him. But I think I’ve learned the hard way that words aren’t everything, and by looking into Joey’s eyes and watching his behaviour, I’ve seen something beyond words, something that lies behind the words, something that can’t be expressed in words. It’s been the single biggest challenge of my life, but also the most rewarding. Because Joey, in all his fragility and his vulnerability, has opened my eyes to the real meaning of difference, to the tyranny of normality, to another way of thinking about human beings.

Joey is what the religious would have called sancta simplicissima, a holy fool. And, yes, he’s “stupid”, and there is no getting away from that. But the great lesson that he offers – which we all forget at our peril – is that being clever isn’t everything. And that nothing is too good for those who cannot help themselves.

Daniel Roque Hall Case Covered By BBC

September 14, 2012

It’s so good to see this case getting the wide press coverage it deserves and needs. I’ve followed the case closely since August and fully support the family’s battle for justice.

A mother from north west London has alleged neglect of her disabled son in Wormwood Scrubs prison “almost killed him”.

Anne Hall’s son, Daniel, 30, who has serious health problems, was jailed in July after pleading guilty to trying to smuggle cocaine hidden in his wheelchair through Heathrow Airport.

Within weeks of starting his sentence he was in intensive care with heart failure.

The Ministry of Justice said the allegations would be resolved in the courts, where the case is currently being considered by a High Court judge, but added all prisoners have access to the same level of NHS services as those in the community.

Mrs Hall and Kaleem Naeem, the inmate’s friend, spoke to BBC London’s Nick Beake.

Mark Neary’s Housing Benefit Reinstated!

September 14, 2012

I’vee just had a Tweet with very, very good news:

BBC Expresses Regret Over Archers Downs Syndrome Abortion Poll

September 14, 2012

I don’t listen to The Archers, but personally, I strongly disagree with the idea of abortion of babies who would be born with any disability. Many would not agree with me, however. This is a very sensitive issue that raises strong feelings on both sides. This question can never have a straight multiple choice answer. So I can see why this poll was criticised.

The Archers has been running for a very long period of time, over which British society has changed in many ways. So it is good just to know that this programme is starting  to cover disability issues. Facts must be faced- abortion is a thought that crosses the minds of many when told their baby may be born disabled. While I understand why the BBC wants to explore this part of the storyline, as a person disabled since birth, I would be very pleased if the BBC decide that the characters should continue with the pregnancy, and allow  The Archers to cover the very important issue of raising a disabled child.

The BBC says it “regrets” causing offence by asking listeners to vote on whether two characters should abort their baby.

In the radio drama, characters Mike and Vicky Tucker recently learned their unborn child had Down’s Syndrome and faced a dilemma over what to do next.

On the programme’s Facebook page, fans complained the vote was “distasteful”, “disturbing and upsetting”.

The BBC admitted the issue was “too complex and sensitive” for a poll.

The online vote was featured on The Archers website last week. It has since been replaced, but a link remains on Facebook with the message: “Mike and Vicky’s dilemma makes up this week’s vote: should they go through with the pregnancy?”

Among the responses, Helen Ward posted: “This poll is incredibly insensitive and inappropriate and should be removed.”

Jill Anthony-Ackery added: “I was very surprised when I saw this poll. The storyline is hard, the considerations are complex and any decision will be fraught with doubts – not a scenario which can be answered by yes/no, by people who have never been there.”

One day after the poll was published, the BBC posted in response: “Sorry you feel this way about the current vote. The polls tend to reflect the storylines that are most talked about in the programme, and this is Vicky and Mike’s dilemma. The result of the poll doesn’t affect the outcome of the storyline.”

It later added the poll was “often about a dilemma that faces a character – eg should Adam leave Home Farm”.

“Mike and Vicky’s decision is more awful than this, of course. But they are still faced with a stark choice one way or the other. So we didn’t think that representing that choice on the poll was trivialising the issue,” it said.

The vote was taken down on Monday, after its scheduled one-week run.

A BBC spokesman said: “The Archers storyline on Mike and Vicky’s pregnancy has been well received by the audience and raises a number of important issues about Down’s Syndrome, informed by the advice and expertise of the Down’s Syndrome Association.

“However this issue is too complex and sensitive for an online poll and we regret any offences the poll may have caused.”

Despite the controversy, Xanthe Breen from the Down’s Syndrome Association praised the Radio 4 show for its handling of the storyline.

“Due diligence has been excellent and producers have made sure the storyline is accurate in what would happen to a woman who goes through the screening process,” she said.

“The storyline is very relevant and encourages people to talk about it. We encourage people to keep listening as the story unfolds.”

We’ll Keep The 2012 Tube Ramps!

September 14, 2012

For a few months at least. This is slightly old news that I missed on Monday but sometimes, old is gold. And it is a big roll forward for wheelchair users!

Ramps introduced at some Tube platforms to help wheelchair users during the Olympics and Paralympics are to be retained.

Transport for London (TfL) said the boarding aids at 16 stations would stay for a few months while a review was carried out.

The move follows positive feedback from customers during the Games.

Disability charity Transport for All welcomed the move saying the ramps had been “revolutionary”.

Increased access

The boards are used where there is a gap between the train and platform.

Faryal Velmi, director of Transport for All, said she was “very happy” with TfL’s decision.

She said: “It’s meant that many many wheelchair users and scooter users have been able to use parts of the Tube network for the first time, which is revolutionary in many cases.”

TfL’s review will examine all aspects of the ramps’ use, including benefits to customers, reliability, cost, level of usage and potential locations for future use.

Mike Brown, London Underground managing director, said: “These ramps have proved to be very useful for our customers and we are going to continue to use them after the Games whilst we review whether they are permanently viable.”

Ms Velmi added she wanted the ramps to be rolled out across the whole network, for trained staff to be on hand to use them, and for longer term changes including raised platforms to follow.

Charlie Swinbourne On The Stem Cell Breakthrough And Deaf Culture

September 14, 2012

Charlie Swinbourne makes some excellent points in this article. He says that the search for a cure for deafness is a matter of personal choice.

He also says that the group of Deaf people least likely to search for any cure are those who are deaf from birth. As a person who has been physically disabled since birth, I personally strongly agree and identify with this point. I have been disabled for so long now that it has become the most important part of my identity. I fully support the idea of treatment to aim for improvement in any disability, but even given a chance, I don’t think I would want a complete cure for myself.

Lydia Cross Wants To Be A Blade Runner In Rio 2016

September 14, 2012

A very nice update on Lydia Cross. I wish her all the best!

Fearless Lydia Cross scooped a Pride of Britain award aged six and now wants to win the nation’s hearts all over again by becoming a blade running champ.

Lydia, 11, who lost her legs to meningitis as a toddler, is one of the youngest blade runners in the country and has her sights set on the Paralympics in 2016.

Her trainer Hayley Ginn, who coached amputee Jonnie Peacock to 100m gold for Britain at London 2012, thinks she has massive potential.

Lydia said yesterday: “I am really inspired by Jonnie and Oscar Pistorius because of everything they have done.”

She went to the Paralympics with sister Millie and coach Hayley, and added: “I got a day pass. It was great. I watched basketball, tennis and even got to see Oscar in the athletics. It was amazing.“I think I am going to make it to Rio in 2016. My favourite event is the 100m because I think I am quite good at it. My training is going really well.”

Hayley said: “She is very young and her progress depends on what she wants to do. If she takes running seriously as she develops and gets stronger she’ll be very good indeed.

“I don’t want to put too much pressure on her but if she wants to do it then I believe she can get to Rio. She is improving massively every day.”

Lydia was two when she was struck down by meningitis.

The disease left her on the brink of death with multiple organ failure and septicaemia. Doctors had to amputate her legs below the knees.

Since recovering she has thought of others by raising awareness of the symptoms of meningitis, and in 2007 was named Child of Courage at the Mirror’s Pride of Britain awards where pop group the Sugababes presented her trophy.

Lydia, of Braunton, Devon, will still only be 15 in 2016 but mum Jodie, 42, says her daughter has never failed to do something that she has put her mind to.

Jodie added: “Since losing her limbs she has been extremely brave. She’s so determined.

“She can ride a bike easily and even wears skinny jeans despite not being able to bend her feet. She is amazing. To her, ‘impossible’ is nothing.”

A Shocking And Awful Update On Mark And Steven Neary

September 14, 2012

When loving father Mark Neary was fighting his battle to have his son, Steven, who has autism, returned to his care at home, I followed the case closely and fully supported his fight.

I was very pleased when the Nearys won their battle, and when Hillingdon council admitted that they had held Steven Neary in their residential care services unlawfully. They were then ordered by a court to pay the family compensation.

So imagine my shock when I read an awful update on the Nearys. Yesterday, Matthew Smith wrote on Facebook:

Mark Neary, who won his battle to get his autistic adult son Stephen out of a care home in Hillingdon, west London, is facing separation from him again because the council has stopped his housing benefit on a technicality. They will pay for Stephen’s care but not for his father to do it, as that would not be “independent”. This appears to be clear revenge for his earlier court battle and the humiliation of the compensation award.

Mark Neary explains in more detail at his personal blog.

And Anna Raccoon, who has also followed the case closely for quite a while, has posted on this latest development here.

Mr Neary has clearly always wanted to care for his son at home. Most importantly, this is where Steven was, is and will be most comfortable. This is why I believe the family should be allowed to stay together. As I wrote to Matthew Smith, I will be doing anything I can to help them in their second battle to do so. I will keep you updated.

Update 1pm: I’m very pleasantly surprised to see that The Times have covered this. I do hope it gets wider press coverage.

Parade ‘Burst Bubble For Athletes’ Says Paralympian

September 14, 2012

Nelson Mandela said it best: “Sport has the power to change the world.” You can’t better that can you? The victory parade on Monday was incredible. And it burst the bubble for the athletes.

When you’re living in the village you’re protected from the outside world. You see the headlines and so on of course. But we really had no idea the impact the Games had had on the country.

It was surreal. We were making our way to the start point and people were already waving and cheering at us. And we thought: “How are we being recognised?” We had no concept of it all.

We saw people crying. Extraordinary. Mind you, when I read handmade signs that said: “Thanks. You’ve put the Great back in Britain”, I welled up a bit too.

The parade was an unexpected bonus. We don’t set out to be famous or anything; we set out to win medals, be the best we can, push our bodies as far as they’ll go. So the impact beyond personal goals is a difficult thing to get your head around.

It is one of the reasons I was so frustrated by my 100m performance. I screwed it up. So I was determined to learn from that for my 200m. For many a bronze medal is considered a consolation prize. For me it was a relief. I was determined to win a medal and record a personal best time.

Everything in athletics is quantifiable. You know how well or poorly you’ve done by looking at the scoreboard. It’s brutal at times. But it’s a great system. Since I started in 2005 I’ve run a personal best’ in every major competition bar one. So to do it in that 200m final made the colour of the medal incidental from my point of view.

It’s all over now. But have we achieved the collective goal of breaking down barriers and improving people’s understanding?

Channel 4 did a remarkable job. And the media in general helped enormously. But I feel we must now go on to the next chapter in the book of understanding. We need to continue to get out there, to inspire and educate people. And that work is neverending.

Many people observed that the Americans don’t really “get” the Paralympics. Their television coverage was, I gather, understated and so many of their athletes were ex-service personnel using the Games as part of their rehabilitation programme. We have to continue to work to change the emphasis. We are elite athletes and that is how we want to be recognised.

These big events are like an addiction to the athlete. It’s a massive stage. The adrenaline flows, and you want more of it; you want to experience it all again.

That’s why it’s so hard to know when to call it quits. We’re not very good at that. But from my point of view I’m still young, fit and motivated.

I certainly want to go to Rio in 2016 but now we have to wait to see what the government and the governing bodies decide with regard to our funding. The victory parade was truly fantastic. But the reality is it is only when we know what the authorities decide that we can sit down and really plan ahead for the future.

Ben Rushgrove is a sprinter who has cerebral palsy and competes in T36 classification events. He won a silver medal in 100m at the Beijing Paralympic Games in 2008 and a bronze in the 200m at the London Games

My Review Of Halfway Gone By Matt Padmore

September 13, 2012

Today, Disability Horions have published a book review I wrote earlier this year. It is of a book called Halfway Gone, which describes its author, Matt Padmore’s, life after the stroke he had aged 35.

Man With Downs Syndrome To Challenge DNR Order

September 13, 2012

A man with Down’s syndrome is suing an NHS trust over a hospital’s decision to issue a do-not-resuscitate order giving his disability as one of the reasons.

The instruction not to attempt resuscitation in the event of a cardiac or respiratory arrest was issued without his family’s knowledge.

Their lawyers describe the order as “blatant discrimination”.

East Kent Hospitals University NHS Foundation Trust says it complied fully with guidance from professional bodies.

The family of the man, who can be identified only as AWA because of a court order, remained unaware of the do-not-resuscitate (DNR) decision until he had returned from hospital to his care home.

The DNR form, issued while he was in hospital in Margate a year ago, was listed as an indefinite decision, meaning it would cover the duration of his stay in hospital, with no provision for review.

The reasons given were “Down’s syndrome, unable to swallow (Peg [percutaneous endoscopic gastronomy] fed), bed bound, learning difficulties”.

AWA, 51, has dementia and was having a special tube fitted to help him with feeding.

The form says there was no discussion with his next of kin because they were “unavailable”, but the family say they visited him in hospital “virtually every day” – and a carer from his home sometimes attended too.

One of AWA’s close relatives, who is pursuing the legal action on his behalf, said: “Until his dementia started three years ago, he had a really hectic social life. He loved parties, discos and going to church.

“He was looked after at home for as long as possible, but then we got him into a nice care home. His health deteriorated a bit – he had eating problems and couldn’t swallow – so the decision was taken to have a Peg inserted so he could receive medication, foods and liquids.

“He was admitted to hospital for a fortnight. When he was discharged, one of the carers at his home was unpacking his bag and found the DNR form, to their horror.

“We weren’t aware of the DNR until then. We were very angry and quite distressed, especially as he’d been re-admitted that day because he’d got pneumonia.

“Since November last year, he’s been right as rain. He has a specially adapted chair, takes part in various activities and is conscious of everybody around him most of them time.

“He has a good way of life now, but somebody wasn’t prepared to give him the time of day.”

AWA and his family are represented by solicitor Merry Varney, from Leigh Day & Co.

She said: “This is definitely one of the most extreme cases we have seen of a DNR order being imposed on a patient without consent or consultation.

“To use Down’s syndrome and learning difficulties as a reason to withhold lifesaving treatment is nothing short of blatant discrimination.

“If an individual was physically preventing a doctor from administering life-saving treatment to a disabled relative, it would undoubtedly be a matter for the police, yet we see doctors taking this decision without consent or consultation regularly.”

Mark Goldring, chief executive of learning disability charity Mencap, said: “We are very disappointed to hear about this case, but unfortunately, we believe that DNR orders are frequently being placed on patients with a learning disability without the knowledge or agreement of families. This is against the law.

“All too often, decisions made by health professionals are based on discriminatory and incorrect assumptions about a patient’s quality of life.

“People with a learning disability enjoy meaningful lives like anyone else. Yet… prejudice, ignorance and indifference, as well as failure to abide by disability discrimination laws, still feature in the treatment of many patients with a learning disability.

“Health professions need to understand their legal duties when treating people with a learning disability, and be held to account when their fail to do so.”

Dr Neil Martin, medical director for East Kent Hospitals University NHS Foundation Trust, said: “The trust cannot comment on this individual case because it is subject to ongoing legal proceedings.

“East Kent Hospitals has put a great deal in place in recent years to meet the needs of vulnerable patients, including practical steps to improve communication with people with learning disabilities and their carers.

“It has a clear and robust policy in place on ‘Do Not Attempt Cardio-pulmonary Resuscitation’, which complies fully with national guidance from the professional bodies.”

Ms Varney is leading a separate legal case to try to make the Department of Health issue government policy across England on DNR forms, rather than leaving it to professional guidance and policy decisions by individual NHS trusts.

That case is on behalf of the family of Janet Tracey, who died at Addenbrooke’s Hospital in Cambridge. It will be heard in the High Court later this year.

Hope For Deafness Cure After Gerbils Hear Again Using Human Stem Cells

September 13, 2012

UK researchers say they have taken a huge step forward in treating deafness after stem cells were used to restore hearing in animals for the first time.

Hearing partially improved when nerves in the ear, which pass sounds into the brain, were rebuilt in gerbils – a UK study in the journal Nature reports.

Getting the same improvement in people would be a shift from being unable to hear traffic to hearing a conversation.

However, treating humans is still a distant prospect.

If you want to listen to the radio or have a chat with a friend your ear has to convert sound waves in the air into electrical signals which the brain will understand.

This happens deep inside the inner ear where vibrations move tiny hairs and this movement creates an electrical signal.

However, in about one in 10 people with profound hearing loss, nerve cells which should pick up the signal are damaged. It is like dropping the baton after the first leg of a relay race.

The aim of researchers at the University of Sheffield was to replace those baton-dropping nerve cells, called spiral ganglion neurons, with new ones.

They used stem cells from a human embryo, which are capable of becoming any other type of cell in the human body from nerve to skin, muscle to kidney.

A chemical soup was added to the stem cells that converted them into cells similar to the spiral ganglion neurons. These were then delicately injected into the inner ears of 18 deaf gerbils.

Over 10 weeks the gerbils’ hearing improved. On average 45% of their hearing range was restored by the end of the study.

Dr Marcelo Rivolta said: “It would mean going from being so deaf that you wouldn’t be able to hear a lorry or truck in the street to the point where you would be able to hear a conversation.

“It is not a complete cure, they will not be able to hear a whisper, but they would certainly be able to maintain a conversation in a room.”

About a third of the gerbils responded really well to treatment with some regaining up to 90% of their hearing, while just under a third barely responded at all.

Gerbils were used as they are able to hear a similar range of sounds to people, unlike mice which hear higher-pitched sounds.

The researchers detected the improvement in hearing by measuring brainwaves. The gerbils were also tested for only 10 weeks. If this became a treatment in humans then the effect would need to be shown over a much longer term.

There are also questions around the safety and ethics of stem cell treatments which would need to be addressed.

‘Tremendously encouraging’

Prof Dave Moore, the director of the Medical Research Council’s Institute of Hearing Research in Nottingham, told the BBC: “It is a big moment, it really is a major development.”

However, he cautioned that there will still be difficulties repeating the feat in people.

“The biggest issue is actually getting into the part of the inner ear where they’ll do some good. It’s extremely tiny and very difficult to get to and that will be a really formidable undertaking,” he said.

Dr Ralph Holme, head of biomedical research for the charity Action on Hearing Loss, said: “The research is tremendously encouraging and gives us real hope that it will be possible to fix the actual cause of some types of hearing loss in the future.

“For the millions of people for whom hearing loss is eroding their quality of life, this can’t come soon enough.”

David Haye Joins The Disablist Tweet Party

September 13, 2012

David Haye seems to have joined the recent ‘party’ of well known people Tweeting disablism. Nicky Clark told me late yesterday:

I saw the Tweet asking for this extremely offensive hashtag to trend:

https://twitter.com/mrdavidhaye/status/245957352803672064

And I responded:

I wasn’t going to blog about this incident until I saw this Tweet from disabled model Shannon Murray:

If you saw the brilliant programme that was The Last Leg, you will remember that they ran a hashtag, #isitok. Had they been asked the question: “Is it ok for a well known boxer to Tweet extremely disablist language and compare the uncontrollable dribbling of a severely disabled person to erotic dreams?” I have no doubt that the answer would have been a resounding “No Way!”

 

 

Strong Evidence That Richard III’s Body Found- With Scoliosis

September 12, 2012

So, according to the Telegraph today, it seems George VI was not the only disabled British King. These are the sorts of facts we should have been taught in history.

This is a message for all mainstream secondary school history teachers, from a disabled ‘child’ who once took mainstream history lessons. There was disability in the slave trade. There was disability in the Holocaust. George VI stammered. So why did I learn these very important things so many years after leaving school?

Yet they didn’t hesitate for a second to teach me that the slave trade was about race, the Holocaust about religion, and that George VI was the father of Queen Elizabeth II. Just as these very important lessons were aimed at reducing religious and racial hatred, teaching us about the disability links in equal amounts of detail might just have reduced disability discrimination and prejudice.

So please, mainstream secondary school history teachers, would you consider studying disability links in more detail in your lessons? You’ll definitely make disabled children feel more included, and you might just teach the rest of the class something too.

 

The Vision Support Service From RNIB Scotland

September 12, 2012

A new centre to help blind and partially sighted people in Tayside officially opens later.

The centre at Ninewells Hospital in Dundee aims to helps people come to terms with their sight loss.

The Royal National Institute of Blind People (RNIB) Scotland has established The Vision Support Service, which is funded by the Scottish Government.

The centre offers information and advice on a range of aids and services to help people maintain independence.

Almost 188,000 people in Scotland already live with a sight loss that seriously affects their daily lives, and this figure is projected to double by 2031, according to RNIB Scotland.

Service-user Betty Harris, from Dundee, said: “I’ve found the service very friendly and reassuring.

“Nothing seems to be too much trouble for them.”

‘Devastating impact’

Alex McGurk, 77, from Blackness, said: “It’s a tremendous service and the people running it are absolutely first rate.

“I heard from other people who had more experience of sight loss and I was able to ask a lot of questions about what help was available.”

The service has been established in partnership with NHS Tayside, which has provided refurbished space within the ophthalmology department of Ninewells Hospital.

John Legg, director of RNIB Scotland, said: “Every day in Scotland, 10 people begin to lose their sight.

“But only a tiny percentage are offered support and counselling, despite the devastating impact sight loss can have on people’s lives.”

He added: “That’s why RNIB Scotland is working to establish a network of Vision Support Services in each health board area where none exist at present.

“These will offer newly diagnosed people the support they need to coming terms with sight loss and can also refer them on to other services available to them.”

Enable Magazine’s Campaign To Make Sure Disability Isn’t Forgotten After The Paralympics

September 12, 2012

Do you want to help make sure disability isn’t forgotten after the Paralympics? Enable Magazine are running a Twitter hashtag campaign to do just that.

Bionics Getting Disabled People Into Work

September 11, 2012

In a job market that is tougher than it has been for a generation, millions are struggling to find – and keep – work.

But while huge swathes of society deal with overcoming cutbacks, closing businesses and forced redundancies, another group of job seekers really does have its work cut out.

Even after a summer of extraordinary Paralympic achievement, people with disabilities face even greater hurdles into employment – access and mobility, coupled often with prejudice and ignorance.

Many believe technology can go some way to addressing this. But it’s a complex journey, with many crossroads, and one that’s far from finished.

At its cutting edge, is Hugh Herr, an associate professor of biometrics at MIT Media Lab.

He believes his pioneering technology – known as bionics – has the ability to tap into a under appreciated workforce who, until now, may have been unable to work.

“I predict a bionics revolution,” he says.

“We’re entering a bionic era where we actually are beginning to see technology that’s sophisticated enough to emulate key physiological functions.”

He speaks with conviction, and for good reason. As the chief technologist of iWalk, he deals with bionics – or, in plainer English, robotic limbs – on a daily basis.

Not only this, but he is the embodiment of the revolution he believes in. During an ill-fated climbing expedition in 1982, severe frostbite led to Mr Herr having both legs amputated below the knee.

Now, thanks to his own products, he is still able to be a climber.

His bionics are so advanced they not only match the functions of a normal human leg, but are in many ways superior – and they are now commercially available, available from other 50 centres across the United States.

One iWalk customer, a factory worker from Ohio, was able to return to work just two weeks after having his new legs fitted – a process that Mr Herr says can be extremely effective if emulated.

“We can get people back to work, which is huge. That alone would cost the state millions of dollars.

“Furthermore, we can reduce or eliminate payments.

“A co-morbidity of limping is often back pain and joint pain – especially later in life. We’ve had patients that have cut their pain meds in half, or three-quarters – very large amounts.”

Removing stigmas

Getting back to work is one thing, but for some, getting into work in the first place can be a struggle.

Barbara Otto is chief executive of Think Beyond The Label, a US non-profit organisation that aims to help businesses overcome a key problem when hiring disabled people: sheer confusion.

“Most businesses who we worked with told us that it was so complicated to find all the relevant facts, all the relevant forms they needed to file to take advantage of all of the great hiring incentives for workers with disabilities,” she says.

To combat this, they created a digital hub for both employees and employers to connect. A social network, in many ways, which ties related skills with the needs of businesses – running online career fairs to maximise the networking potential.

In doing so, Think Beyond The Label removes many of the stigmas that can often keep disabled people distant from the workforce.

“The greatest thing about these online career fairs is that it doesn’t require businesses to travel, and it doesn’t require people with disabilities to travel to a space.

“So it breaks down any kind of inhibitions an employer might have, or a person with a disability might have for that matter, in connecting with employment.”

A key component, Ms Otto says, is in selling the different perspective an employee with disabilities can bring.

“I always like to say, if you want to hire someone who thinks outside of the box, then hire a person with a disability – because they have to live outside of the box.

“Their day-to-day experiences inform some of their innovation.

“We often find as we’re looking for innovation in either design of technology or usability of software, people with disabilities are really able to provide that sort of missing innovation because of their day-to-day experience of having to innovate.”

Access to work

Where Think Beyond The Label provides practical, immediate tools for people with disabilities, and Mr Herr’s iWalk offers a glimpse at future of bionically-improved humans, there are calls for serious investment in order to capitalise on existing technologies to aid accessibility.

“I hope ‘access to work’ will start to mean what it’s supposed to mean, and technology will form a central part of the process of getting into work,” says Alan Roulstone, professor of disability inclusion at Northumbria University, close to Newcastle in the north of England.

He believes the next major stage for helping people with disabilities in the workplace lies with environmental navigation – best described as like satellite navigation for an office building.

“I think given how telephony is developing, given how GPS technologies are developing, I think it will only be a short period of time where you have smartphone apps which allow people with visual impairment, cognitive decline, or dyslexia and so on having phone applications that which can help them navigate their environment.”

Others, conscious of emerging technology’s ability to push us beyond nature’s boundaries, are wary about how the use of technology – particularly bionics – can be used to enhance our bodies.

“There’s so much pain and suffering in the world today due to bodies that don’t work very well, so the dominant narrative is building a society where we reduce that pain and suffering,” says Mr Herr. “People typically don’t find that unethical.

“I can’t see any issue with going beyond what nature intended. We do that already – with mobile phones, our trampolines, our bicycles, our cars and our aeroplanes.”

Disabled People Need A Louder Voice In Parliament

September 11, 2012

Says Frances Ryan. I agree with her. I wish the Minister For Disabled People was a disabled person, at least.

How Do People View The Wheelchair?

September 11, 2012

The London 2012 Paralympics were filled with glorious achievements – multiple medal hauls and dogged fight-backs. But in the afterglow of the Games will the spectacular scenes stay in the memory and change the way disabled people are perceived?

American radio star John Hockenberry, who’s used a wheelchair since a car accident more than 30 years ago, explains why he hopes the positives from the Paralympics will endure.

Martyn Sibley’s Epic European Disability Roadtrip WILL Happen

September 11, 2012

I am very pleased to be able to announce that Martyn Sibley’s Epic European Disability Roadtrip will be happening! I wish him all the very best, even though I personally think he’s crazy!

Kaliya Franklin On Woman’s Hour, 10AM Today

September 11, 2012

She’ll be discussing Disabled Women Post-Paralympics:

At the Closing Ceremony of the Paralympics, Sebastian Coe said that following the huge success of the Games, ‘none of us will ever see disability in the same way again’, and this seems to be backed up by a Channel 4 poll, in which two thirds of people who watched the Paralympic coverage said it’s had a good impact on their perceptions towards people with disabilities. Will ordinary disabled women experience any improvement in their lives or in attitudes as a result of the Paralympics, or is all this inclusivity and understanding merely a temporary blip? Jane talks to Sophie Morgan, a model and artist who presented some of the Paralympic coverage on Channel 4, and Kaliya Franklin, a disability campaigner who writes a blog called benefitscroungingscum.

Tourettes: Let Me Entertain You

September 11, 2012

I’ve just heard about a new BBC Three series called Tourettes: Let Me Entertain You.

This is not a long post though, because I’m off to watch it!

Updated after watching: This is a three part series following Radio 1 DJ Reggie Yates’ attempt to create a band of singers and musicians with Tourettes. It was great to see that one band member is Ruth from last December’s documentary Tourettes: I Swear I Can Sing.

I can already tell that this will be a series I’ll like.

What Have Disabled People Learnt About The Ableds During The Paralympics?

September 10, 2012

Kaliya Franklin asked this question on Twitter this morning. The Guardian picked up her Tweet and collected some responses here. 

I responded:

This question reminded me a bit of a post I wrote a few years ago about a sighted person who went to a blind school for evening classes. There I wondered if real inclusion would happen when disabled people let able bodied people into their world.

Well, for the last ten days, with some help from Channel 4, that was exactly what happened. Disabled people let able bodied people into their world. We played sport on our terms to the best of our abilities, and they came to watch. We sincerely hope they got some pleasure out of it- and we sincerely hope they realised that in spite of differences, in spite of challenges that they may not yet face, we have the same wishes, hopes and dreams.

If the parade I’ve just seen was anything to go by, they did realise that. I could never have dreamed that Sarah Storey and Victoria Pendleton would hug each other in the middle of Central London. I could never have dreamed that Ellie Simmonds and Rebecca Adlington would be standing next to each other live on national TV.

At this parade, the Paralympic flag and the Olympic flag flew together alongside the Union Jack as hundreds of talented athletes danced together to the Pet Shop Boys- and no one cared less that half of those athletes were dancing on wheels or prosthetic legs.

In order to be fair, the Paralympics needed to be different. I think most people now realise that. However, by merging the athletes at the parade, the organisers sent out one clear message. We may be different, but we are most certainly equal.

I have learnt that ‘the ableds’ have realised this about me- and I sincerely hope they always remember it. If they do, these Paralympics will lead us closer to real inclusion in all areas of society.

Thank you Paralympians. Goodbye Paralympics. You were fantastic.

Gabriel Hardisty-Miller Obituary From The Guardian

September 10, 2012

He was a campaigner who inspired the Autism Act 2009.

Audience Of 7.7M For Paralympic Closing Ceremony

September 10, 2012

A peak audience of 7.7 million people tuned in to watch the closing ceremony of the London 2012 Paralympic Games in the UK on Channel 4 on Sunday.

The spectacular finale, described as a “festival of flame”, featured rock band Coldplay and a cast of around 1,200.

It was the most-watched programme on TV between 21:00 and 23:00 BST, beating Inspector George Gently on BBC One and ITV1 drama The Scapegoat.

The broadcast helped make Channel 4 the most-watched channel across the day.

But the ratings were down on the peak of 11.2 million who had tuned in for the Paralympics opening ceremony 11 days earlier.

Channel 4’s coverage of the closing event, which ran from 19:00 to 23:10, was watched by an average of 5.9 million people.

The ceremony also included appearances by US pop stars Rihanna and Jay-Z as well as the parade of athletes and the passing of the Paralympic flag to the Mayor of Rio de Janeiro.

Declaring the 2012 Paralympics closed, International Paralympic Committee (IPC) president, Sir Philip Craven, said: “These Games have changed us all forever.”

Meanwhile, Sir Philip earlier said the IPC would scrutinise potential broadcasting partners more carefully in future after US rights holders NBC failed to show any live 2012 action.

NBC scheduled four hour-long highlights programmes on the NBC Sports channel, followed by one 90-minute round-up.

Sir Philip said of future media partners: “We’ll examine their values as they will examine ours. If the values fit, we’ve got a chance. If they don’t we’ll go somewhere else.”

Channel 4 aired 400 hours of Paralympic coverage in the UK, while Australia’s ABC screened more than 100 hours.

In Japan viewers had a nightly one-hour highlights programme. Its capital Tokyo is bidding to host the 2020 Games.

NBC did not show any live action and its 90-minute round-up programme will not be broadcast until 16 September.

Yet the broadcaster said the total of five-and-a-half hours represented an improvement on the 2008 Paralympics in Beijing, when viewers got a single 90-minute highlights package.

“The people of the USA, for example, particularly the parents and families of the athletes, they are all ready for Paralympic sport,” Sir Philip added.

“Take the plunge, take the risk and then you’ll succeed.”

NBC said its coverage of the London 2012 Olympic Games was the “most-watched television event in US history”, with 219 million people watching over the duration of the event.

But it drew criticism for delaying the broadcast of popular events until prime time hours.

Viewers also complained of problems with online streaming and edited versions of the opening and closing ceremonies.

Christine Waddell- Britain’s Longest Survivor Of Locked In Syndrome

September 10, 2012

LIKE millions of women across the country, Christine Waddell lives in a smart home, likes a gossip and enjoys a vodka at the weekend.

She loves shopping and chocolate, has the Fifty Shades trilogy and checks Facebook more than she probably should.

But there’s a crucial difference in Christine’s life — for more than 15 years she has been totally paralysed but fully mentally aware.

Christine is Britain’s longest survivor of locked-in syndrome.

Like fellow locked-in sufferer Tony Nicklinson — who battled until his death last month for the right to die — Christine suffered a massive brain stem stroke which effectively cut off her brain from her body.

She can hear, see and understand everything around her but relies on 24-hour care to keep her alive.

The 41-year-old can move her eyes — flicking them up for yes and down for no — and is able to communicate via her carer.

She spells out words by blinking using an alphabet table, or through a computer which uses eye tracking to enable her to spell out words then “speak” them.

She is also able to compose and email using the same technology.

On Saturday, newly appointed health minister Anna Soubry attacked the laws which banned Tony Nicklinson, 58, from ending his own life.

And although Christine supports Tony’s campaign for an individual’s right to choose to end their life, she decided to share her story to make people aware that not all sufferers of locked-in syndrome want to die.

Christine, from County Durham, told The Sun: “Assisted suicide should be legalised. It is the right of the individual to decide. Able-bodied people can, so why not disabled people too?

“Tony Nicklinson did bring a lot of media attention to locked-in syndrome, but not all survivors feel the way he did.”

Christine was 26 and working as a data input clerk when her life changed for ever, in April 1997.

She had just started dating a new boyfriend, enjoyed socialising with friends and going to the gym and had got a pet kitten when she fell in the bathroom of her home.

She picked herself up but collapsed again, where she lay for three days, until a colleague raised the alarm when she didn’t show up for work. Her dad broke into her flat and called an ambulance.

Christine recalled: “At first the doctors didn’t expect me to make it through the night.

“The first week in the high-dependancy unit was the worst, I couldn’t communicate at all and was totally confused and terrified in case the doctors thought I was dead.

“Every time someone came near me I would frantically waggle my eyes around, as if to say, ‘look, I’m still alive’.”

After almost a week a consultant finally realised Christine was awake and diagnosed locked-in syndrome.

Christine spent 17 months in hospital before being allowed home — moving in with her parents Colin and Beryl in County Durham.

She recalls: “From what I have heard, just about every locked-in survivor wants to die in the early days. But my time was just after I came home and reality hit me about what my life was going to be like.

“You learn to accept it though, and I never think that way now.”

Her condition remained the same for eight years, then a tiny amount of movement returned to her left big toe. Earlier this year some movement returned to her left thumb, and the rest of the toes on her left foot.

In February Christine’s carer discovered a video on YouTube of Kate Allatt, a Sheffield mum-of-three who is one of the few people to recover from locked-in syndrome and who now runs Fighting Strokes, a charity that helps those with the condition.

Christine said: “I was totally in awe. I emailed Kate and we ended up having a conversation on Skype.

“She advised me to start neuro physiotherapy. It took me weeks to secure the funding from the NHS, but already my other thumb has started to work and I can sit unsupported for ten minutes.”

A small movement in the thumb might not seem much, but it meant Christine could type or control her own electric wheelchair.

Watching Christine receive her physio, her iron will to get better is clear. She has to concentrate utterly just to remain sat up.

And she admits that although she never expected to still be locked in 15 years on, she draws inspiration from her mum Beryl, who died this year, aged 70, from motor neurone disease.

Christine said: “I’m sure she’s looking down on me and helping me to get better. I have heard of one woman in America who lived for 36 years with the condition, but I read that most die within ten years.

“Luckily, I am really strong willed, so I will probably be here for ever.”

But locked-in syndrome has robbed her of her dream to have a family, and experience being a mum. She said: “I have come to accept I won’t be able to have children, even though this was in my plans.

“I used to think ‘I wish I had had them before the stroke’, but to be honest, I don’t know which predicament is worse — not having children and desperately wanting them or having children then having to watch someone else bringing them up, and not being able to comfort them when they cry.

“I had also come to accept that I would never meet someone special and get married, but I did recently meet someone.

“Unfortunately though, he couldn’t cope with my disability and we split up after a couple of years together. We are still best of friends though.” Having access to the internet has transformed Christine’s life. Four years ago she was given a grant for a £28,000 computer which works by tracking her eye movements.

Christine revealed: “I really can’t express how much of an impact the internet has had on my life.

“Before it, my life was just at a standstill, now it has just taken off like a rocket.

“Without it I wouldn’t have met Kate Allatt or started the physio, not to mention Facebook.

“Through the site I have re-kindled countless old friendships and gained a social life, I am in touch with lots of victims of locked-in syndrome, who are giving me recovery tips, and I got in touch with my now ex-partner and had the happiest two years of my life.”

Christine also enjoys daily pleasures like trips to the shops with her carer, sitting in the sunshine in the garden and the occasional vodka, which she takes through her feeding tube, or having melted chocolate which she can swallow.

She loves listening to music and audiobooks.

Christine lives in her own smart, adapted bungalow, which she moved into two years ago. She loves going to concerts, and has tickets to see George Michael this year.

She also has a wicked sense of humour, teasing The Sun’s photographer constantly throughout our interview. She has a distinctive, infectious laugh and, although she hasn’t been on holiday since the stroke, she is looking into the possibility of a trip away.

Christine has even begun to write a book about her life so far.

She added: “If and when I do recover, the first thing I want to do is eat burgers. And talk. I loved chatting and I miss that a lot.”

 

 

 

Survey Finds Gyms Unfit For Disabled People

September 10, 2012

Many of Britain’s gyms, leisure centres and swimming pools are “no-go zones” for disabled people and will struggle to cope with an expected surge in interest in fitness activities, following the Paralympic games, campaigners have warned.

A crowdsourced survey of hundreds of gyms across the UK by charity volunteers suggests that many local facilities are partially inaccessible, difficult to navigate and expensive to join. Some did not have specialist gym equipment and nearly half lacked staff trained in disability awareness.

One of the key legacy aims of the Paralympics is to increase participation in sports by Britain’s 11 million disabled people. Just 18% of disabled adults undertake physical activity for more than 30 minutes a week, compared with 38% of non-disabled adults, according to Sport England.

The success of the Games has raised hopes of a surge in interest in disability sports participation, but the survey of gyms and leisure centres, carried out on behalf of the charity Leonard Cheshire Disability, found that many facilities are unprepared to capitalise on the potential demand.

The charity said: “Gyms and leisure facilities are a crucial ‘first point of entry’ to sports and physical activity for most adults. Yet for many disabled people they are ‘no-go zones’. Inaccessible changing rooms, steps, poor staff training and lack of usable sports equipment are some of the common barriers that can prevent disabled customers from getting involved.”

Guy Parckar, the charity’s head of policy, said that while most gyms were “broadly accessible” and complied with disability discrimination laws to fit ramps and lifts, many had failed to get right small but crucial details. These could make all the difference when it came to attracting or retaining disabled customers.

Although most gyms provided disabled parking spaces, for example, the survey found that some bays were not wide enough to enable a wheelchair to be unpacked from a car. Parckar said in many cases, improvements such as installing easy-to-read signs or colour contrast markings on steps, would be relatively inexpensive. It was crucial that gyms sought advice from local disabled people on how to improve access, he added.

The survey of 300 UK leisure facilities found that:

• Nearly a third of gyms did not have an automatic door at the entrance to the gym, while some were fitted with heavy internal doors that were difficult to open. One survey reporter said he watched a wheelchair user forced to open such a door by pushing it with his head.

• Although many gyms had lifts, just over one in five were not working properly. A common problem was that lifts were too small for larger wheelchairs and control buttons were set too high. In one case, it was reported that a lift leading to the gym area of a leisure centre did not appear to have been working for more than a year.

• A quarter of swimming pools did not have hoists to support disabled people to get into the water, while 31% of gyms did not have any fitness equipment that was suitable for disabled people.

The survey, carried out as part of Leonard Cheshire Disability’s Exercise Your Right campaign, also highlighted instances where gyms provided excellent services to disabled people. Highly rated gyms were identified as such, not just because they had accessible buildings or equipment but because they practiced good “customer care and management.” They also employed staff who were trained to be aware of disabled people’s needs.

There is a potentially huge appetite for sport and exercise among disabled people, according to a separate survey of nearly 1,000 disabled people, carried out this week by Leonard Cheshire Disability. It found more than two thirds of respondents said they would like to take part in sport more regularly. Although a quarter said they exercised twice a week or more, a third of those surveyed said they never took part in sport or exercise.

Some 85% of respondents were not members of gyms or leisure centres. Asked why they did not consider joining, more than half said it was too expensive, while 26% said difficulty in accessing facilities put them off

Just under half of respondents said the Paralympics had inspired them to get more involved in sport or exercise, and 26% thought that the Games would encourage more disabled people to take part. But while 89% felt the Games would leave a “positive legacy” overall, just 12% believed it would lead to improved accessibility.

David Stalker, chief executive of the Health and Fitness Industry Association, which represents more than 3,000 UK gyms and leisure centres, said it was concerned at the findings.

Stalker said the association would be continuing its work with charities to get more disabled people active: “We will continue to work with our operator members to go above and beyond the minimum requirements to deliver a user friendly environment for all their customers.”

Guardian Letter On Daniel Roque Hall

September 10, 2012

I am very pleased to see that several campaigners have written a letter to the Guardian about the case of disabled prisoner Daniel Roque Hall. Unfortunately, I was not asked for my signature. Had I known about the letter, I would gladly have signed it. However, I have been following the case closely since I heard about it last month and the campaign to get Daniel Roque Hall out of prison has my full support.

Fiery Finale For 2012 Paralympics

September 10, 2012

London’s 2012 Paralympics has ended with a fiery finale and official handover to 2016 host, Rio de Janeiro.

The show, described as a “festival of flame” honouring Britain’s ancient traditions and festivals, brought to a close 11 days of sport.

UK band Coldplay led the show, which started at 20:30 BST, with a live set reflecting the four seasons.

The event ended what organisers say has been “the greatest Paralympic Games ever”.

Unlike the other Games ceremonies, the 4,200 athletes were seated around the main arena, putting them at the heart of the action.

Declaring the 2012 Paralympics closed, International Paralympic Committee president, Sir Philip Craven, said “these Games have changed us all forever.”

Paralympians Ellie Simmonds and Jonnie Peacock helped to put out the Paralympic flame, which was shared out across the stadium symbolising “the eternal nature of the flame living among us all”.

Each participating country will take home one of the 200 copper petals that made up the Paralympic cauldron.

‘A few surprises’

As Sunday’s show began, a tribute was paid to armed forces charity, Help for Heroes, and armed forces personnel who provided last-minute Olympic security after private firm G4S failed to recruit enough guards.

GB Paralympians David Weir and Sarah Storey, who both won four gold medals at the Games, carried the British flag into the Stadium, as flagbearers representing 164 nations participating in the Paralympics entered the arena.

And Captain Luke Sinnott, who lost both legs and an arm in an IED bomb blast while serving in Afghanistan, climbed the flagpole to raise the Union Jack.

Coldplay sang songs from their five albums, while dancers including the Candoco Dance Company – a contemporary group of 12 disabled and non-disabled dancers – performed with flames around the burning face of a “sun king”.

Apart from Coldplay’s live set, tonight’s sold-out finale featured performances from pop star Rihanna, rapper Jay-Z and a cast of around 1,200 performers on three circular stages – Summer, Winter and the Sundial.

“The idea is the coming together as one,” said artistic director Kim Gavin behind the Festival of Flame.

“We are known as a nation for having the most festivals, it is something that we do – with 600 festivals a year.

“We pay tribute to all the human spirit and achievement through this wonderful sport of the last two weeks.”

A motorcade of “weird and wonderful” vehicles, crows on stilts, and flaming bicycles invaded the Stadium during the show.

And Kenya’s Mary Nakhumicha ZakayoIrish and Irish runner Michael McKillop were presented with gold medals in recognition of them winning the Whang Youn Dai Achievement Award – for athletes who exemplify the best spirit of the Paralympic Games.

Flowers were also presented to honour the 70,000 Games Maker Olympic and Paralympic volunteers.

Some 120 child volunteers from east London are taking part in tonight’s spectacle, along with disabled aerial performers from Circus Scape and The British Paraorchestra.

After being passed the Paralympic flag by London Mayor Boris Johnson, performers from Rio – which will stage the games in 2016 – put on a colourful performance fusing hip-hip freestyle and samba, performed by disabled and non-disabled dancers.

Speaking to the 80,000-strong crowd, organising committee chairman Lord Coe said the UK would “never think of sport the same way and we will never think of disability the same way.

“The Paralympians have lifted the cloud of limitation.”

He added: “Finally, there are some famous words you can find stamped on the bottom of a product. Words, that when you read them, you know mean high quality, mean skill, mean creativity.

“We have stamped those words on the Olympic and Paralympic games of London 2012.

“London 2012. Made in Britain.”

IPC president Sir Philip Craven said the Games had been “unique and without doubt, in my mind and those of the athletes – the greatest Paralympic Games ever”.

‘Superhuman’

Speaking before the start of the ceremony, Prime Minister David Cameron said: “I think it’s been an absolute triumph from start to finish and I’m really proud of the country, not just that we’ve put on a great show, but we’ve had these great audiences”.

Mr Cameron, whose disabled son Ivan died in 2009, added: “I think back to Ivan. As every parent, you think about all the things they can’t do, but at the Paralympics they are superhuman, you see all the things they can do.”

He also said it would give momentum to sports participation and the Paralympics had changed perceptions of disabled sport.

Mayor of London Boris Johnson said he hoped to see a social and cultural legacy from the Games.

China has finished top of the Paralympic medals table, with 231 medals – 95 gold. Great Britain cemented third place behind Russia, with a tally of 120, including 34 golds.

In other developments on the final weekend of 2012:

  • Thousands of spectators cheered GB’s David Weir to victory in the wheelchair marathon – his fourth 2012 gold medal.
  • Team-mate Shelly Woods took the silver in the women’s race
  • On Sunday, Brazil’s Tito Sena won the T46 marathon, and Alberto Suarez of Spain won gold in the T12 event, breaking his own world record with a time of 2:24:50
  • Channel 4 revealed more than four million people tuned in to watch South Africa’s Oscar Pistorius win gold in the T44 400m on Saturday night
  • Organisers say some 2.7 million Paralympic tickets have been sold – beating targets by 200,000 and predicted sales by £10m

On Monday, 800 British stars of the Olympics and Paralympics will celebrate their success during a victory parade through the streets of London.

Confidential Benefit Forms Opened And Sorted By Royal Mail Staff

September 9, 2012

Confidential medical information from sick and disabled people applying for welfare benefits is opened and sorted by Royal Mail staff on behalf of the Government without the claimant’s knowledge or consent, The Independent can reveal.

Medical experts reacted angrily to the potential for breaches in confidentiality after it emerged that the Department of Work and Pensions (DWP) routinely uses Royal Mail to process the thousands of benefits claims, including health data, it receives every day.

The revelations have prompted fresh concerns about the fact that the handling of sensitive personal information can be legally outsourced without the subject’s consent.

For example, people applying for sickness benefits such as employment support allowance (ESA) must first complete a detailed medical questionnaire explaining their conditions, prescribed medication and therapies, and the names and addresses of their doctors and nurses.

The form, which also includes highly sensitive questions about addictions and mental illness, is then posted in a pre-addressed envelope to the DWP or Atos Healthcare – the Paralympics sponsor paid by the Government to carry out controversial assessments of claimants’ capacity to work.

However, it has emerged that these envelopes are routinely opened and the contents sorted by the Royal Mail, unless the envelope is specifically marked “private and confidential”. In those cases they are sent to Atos unopened, according to the DWP.

The information came to light after Lynne Neagle, a Welsh Assembly member, was asked to investigate by a constituent who was told by a local post office not to bother sending ESA forms by special delivery as the envelope would be opened by Royal Mail regardless.

Former RAF man John Williams, 50, from Pontypool in south Wales, received incapacity benefit (the precursor to ESA) for 10 years, because he was unable to work as a result of arthritis and post-traumatic stress disorder. He was recently declared fit for work – which means that his benefit will stop after 12 months whether he has a job or not – and was posting his appeal documents when told about Royal Mail’s role. “Nowhere in any of the paperwork does it say that a third party is involved,” he said. “People are sending very personal information and have a right to know this is happening; I feel like I’ve been misled.”

Ms Neagle said: “These claimants often have incredibly complex case histories – they may have mental health problems or be victims of sexual abuse – I imagine they’d find it incredibly unsettling to know that such deeply personal information was being treated like this.

“While I have no reason to doubt the absolute integrity of the Royal Mail staff involved, that’s not the point – they simply should not have access to this kind of information.”

The DWP said security measures were in place to minimise the risk of any data breaches, including CCTV in sorting rooms and procedures that mean at least two people open the mail together.

“We are a large organisation that handles all kinds of sensitive information. We use Royal Mail to sort and direct our mail to the appropriate processing centre,” a spokesman said. “We hold the contract and ensure they abide by the same data protection and security checks as any DWP employee.”

Dr Tony Calland, chair of the British Medical Association ethics committee, said the security was irrelevant: “We are very concerned that a government department could even contemplate allowing such sensitive and confidential medical data to be handled by a third party without the person’s consent.”

An Atos Healthcare spokeswoman said: “We’re subject to the postal arrangements set by the DWP. Once we receive information we strictly comply with all of the Government’s confidentiality and data security regulations. Where the envelope is addressed directly to Atos Healthcare it is opened by our staff.”

Right To Die Law Change Would Cause Row, Warns Tory MP

September 9, 2012

There would be “an almighty parliamentary row” if laws on assisted suicide were re-examined, Conservative MP Mark Pritchard has said.

The former secretary of the 1922 committee of backbenchers said Tory MPs would “not accept reform lying down”.

His comments come after new health ministers Anna Soubry and Norman Lamb suggested there was a case for reassessing legislation.

The British Medical Association (BMA) said it opposed any change to the law.

Earlier on Saturday, newly-promoted health minister Anna Soubry told the Times it was “ridiculous and appalling” that Britons had to “go abroad to end their life”.

Ms Soubry, Conservative MP for Broxtowe, said those seeking help to die should be allowed to obtain assistance in the UK.

She rejected euthanasia, but said “you have a right to kill yourself”.

Her Liberal Democrat colleague Mr Lamb added that he also believed there was a “strong case” for the law to be reconsidered.

‘Slippery slope’

However, Mr Pritchard responded by saying that attempts to change the law would be met with fierce opposition and would cause “an almighty parliamentary row”.

“Parliament writes the laws of the land not the CPS [Crown Prosecution Service] or individual ministers,” he said.

“Any new right-to-die legislation will be rigorously fought by MPs from across the House.

“This is a slippery slope, which incrementally and over time, will reduce the ‘right to life’.”

BMA president Baroness Hollins also criticised moves to re-open the debate, and made it clear the medical profession did “not support a change in the law”.

Speaking to Sky News, she said: “To change the law would be to change the boundary between life and death altogether. That’s a journey I just don’t want us to even start out on in this country.”

The Department of Health said the views expressed by Ms Soubry were her own, and the Ministry of Justice said there were no plans for the government to change the law.

It was a matter for Parliament to decide, the justice ministry added.

Campaign group Dignity in Dying said it was currently consulting – along with the all-party parliamentary group on choice at the end of life – on a proposed draft bill.

In January, the Commission on Assisted Dying – led by Lord Falconer and set up and funded by campaigners who want to see a change in the law – said there was a “strong case” for allowing assisted suicide for people who are terminally ill in England and Wales.

But the report had a mixed response, with critics calling it biased.

Paul Tully, of campaign group SPUC Pro-Life, warned that if assisted dying was legalised people with disabilities would be faced with “the sickening prospect that if they struggle with suicidal feelings they will be given help to die instead of care and support”.

“Such a move would allegedly save huge amounts of public funds in the costs of caring for disabled, elderly and supposedly unproductive people,” he added.

“Disabled people must speak up now before the minister starts trying to legislate against their equal right to exist.”

The debate over assisted suicide has resurfaced after Tony Nicklinson, a man with locked-in syndrome, died a week after losing a legal bid to end his life.

Assisted suicide currently carries a sentence of up to 14 years’ imprisonment.

The law currently draws a crucial distinction between doctors deciding not to provide or continue treatment, which might prolong life, and acting to end a life, by for example administering lethal drugs.

Following the decision by High Court judges with regards to Mr Nicklinson, the BMA had said the court made “the right decision”.

“The BMA is opposed to the legalisation of assisted dying and we are not lobbying for any change in the law in the UK,” it said.

Mr Nicklinson’s wife, Jane, meanwhile, has said she will appeal – as his widow and carer – against the High Court decision on his behalf because “nobody should have to suffer like Tony did”.

Mrs Nicklinson, from Melksham, Wiltshire, said: “It is too late for Tony but I hope that we can now help those who find themselves in a similar position.”

Giles Duley Revisiterd

September 8, 2012

The BBC have interviewed Giles Duley, the photographer who lost three limbs in Afghanistan last year, on his second shot at life.

New Junior Minister Anna Soubry Wants Right To Die Law Shift

September 8, 2012

Terminally ill people seeking help to die should be allowed to obtain assistance in the UK, a newly promoted health minister has said.

Anna Soubry told the Times it was “ridiculous and appalling” that Britons had to “go abroad to end their life”.

She rejected euthanasia, but said “you have a right to kill yourself”.

The Ministry of Justice has said legalising assisted suicide would allow murder.

Ms Soubry, who was appointed a health minister in a reshuffle earlier this week, called for greater “honesty” over when people would be prosecuted over helping someone to die.

The MP for Broxtowe told the Times: “I think it’s ridiculous and appalling that people have to go abroad to end their life instead of being able to end their life at home.

“You can’t say to a doctor or a nurse, ‘Kill this person’ but…. you have a right to kill yourself.

“The rules that we have about who we don’t prosecute allow things to happen but there’s a good argument that we should be a bit more honest about it.”

The debate over assisted suicide has resurfaced after Tony Nicklinson, a man with locked-in syndrome, died a week after losing a legal bid to end his life.

He embarked on legal proceedings to clarify whether his wife, Jane, would have been prosecuted for injecting him with a lethal dose of drugs.

His legal team argued that the current murder law would have infringed his right to respect for his private life as part of the European Convention on Human Rights.

But three High Court judges rejected his plea for the law to be changed, saying the issue should be left to Parliament.

He passed away days later, having refused food since the ruling.

The law currently draws a crucial distinction between doctors deciding not to provide or continue treatment, which might prolong life, and acting to end a life, by for example administering lethal drugs.

Following the decision by High Court judges with regards to Mr Nicklinson, the British Medical Association said the court had made “the right decision”.

“The BMA is opposed to the legalisation of assisted dying and we are not lobbying for any change in the law in the UK,” it said.

Sophie Christiansen: Access In London Is Terrible

September 8, 2012

The multiple Paralympic gold-medal winner Sophie Christiansen has told the Guardian that public transport for disabled people in London is appalling, job opportunities minimal, and that she would find it impossible to live in the city.

“Access is horrendous in London. We’re meant to be the world leader in everything, and it’s rubbish,” said the 24-year-old equestrian champion.

Christiansen, who was born with cerebral palsy and competes in the category for those with most severe disability, has won three gold medals in dressage at London 2012. She said that for a few wonderful weeks London had been transformed by the help disabled people had been given with transport, but believed that this was unlikely to continue and added that the bigger issue was tackling the infrastructure. “Public transport has improved with the Games because there were so many volunteers around to put out ramps. But in terms of actual physical access, they haven’t done anything.” She said that to travel on trains she had to book help 24 hours in advance, and even then she had often been left stranded because the help was so unreliable.

“I went to Vienna at new year and their underground system was amazing. It really put London to shame. The tube would come up, and the platform would be level with the carriage and a little ramp would come out of the carriage. It’s brilliant and it can be done.”

Although 65 tube stations in London have step-free access, only a handful of them are in the centre of the city and almost 80% of stations are not accessible for disabled people.

The coalition government plans a 20% cut in disability living allowance and to clamp down on so-called benefits “scroungers”, but Christiansen said the reality was that disabled people had little chance to succeed in the job market. “I’ve got a job now, but getting it was really difficult,” said the athlete, who has a first-class master’s degree in mathematics. “With my master’s, I wanted to get a high-flying job in the City. I went to loads of interviews in the City and ended up thinking this isn’t going to work. Firstly, I wouldn’t be able to live in London because of access, and secondly the big companies weren’t willing to give me a bit of extra help.”

She said the Paralympics had been “amazing” in transforming attitudes to the disabled, but now the battle was to improve infrastructure and tackle discrimination among employers. “I’ll be out talking to politicians about this,” she said.

Olympians And Paralympians To Get Their Own Honours List

September 7, 2012

Britain’s Olympians and Paralympians are to get their own honours list, rather than simply being included in the New Year’s Honours.

David Cameron has decided to place awards arising from the London 2012 Games outside the usual system.

The move is to enable the list to reflect the scale of achievement by British athletes.

Under normal Whitehall rules, there is one knighthood for a sports person, with four CBEs, 68 OBEs and 134 MBEs.

But the 29 gold medals at the London games and more than 100 medals so far at the Paralympics have raised expectations that champions such as Jessica Ennis, Mo Farah, Sarah Storey and Ellie Simmonds will be recognised.

Johnnie Peacock who won the T44 100m said he was pleased by the prime minister’s decision.

Mr Peacock said: “That is good news. It’s good to hear that he’s obviously supporting everything and you know this country really has pushed the Olympics and Paralympics and they really are getting behind everyone so it’s great to see the support that even he’s given.”

Dame Tessa Jowell, the former Labour Olympics minister, has also welcomed the decision by Mr Cameron.

Speculation that Britain’s Olympic heroes would miss out on honours was triggered last month by a senior civil servant, Jonathan Stephens, who told the BBC medals would not mean an “automatic gong”.

Honours are awarded for exceptional achievement or service, twice every year – at New Year, and in mid-June – and are decided by a Whitehall committee and not the government.

The sport committee, which is chaired by Olympic chief Lord Coe, is strictly limited as to the number of gongs it can award per year.

Baroness Grey-Thompson – herself an 11 time paralympic gold medallist – and sits on the sporting honours committee previously told the BBC that they were able to award “one or two” knighthoods, a “few more” CBEs, “more” OBEs and “up to 45-50 MBEs”.

By giving Olympic and Paralympic athletes their own honours list Downing Street can ensure that there is no limit on the number of awards handed out.

FHM: Three Hottest Female Paralympians

September 7, 2012

As a woman and a  feminist, I never thought I’d ever be thanking FHM for anything. Until I heard that they have listed their three hottest female Paralympians.

A popular mainstream men’s magazine realising that disabled women can be beautiful and sexy? Wow, the Paralympics really have changed attitudes to disability.

See, DisAbled girls- we’re not Undateable in the slightest.

Now for a bit of Friday Fun- men, are FHM right? If not, who are your top three hot female Paralympians? Or disabled women?

Women- same question to you about men! Answers in the comments below please…

Stop The Unfair Exclusion Of Sterre Ploedger

September 7, 2012

As a passionate supporter of inclusion, this has my full support. I have signed the petition, and I ask you to do the same.

Thanks to a very successful campaign, Sterre was enrolled on the Level 1 performing arts course. She started last Monday and has had a great week.

However, yesterday the Principal attacked. She excluded Sterre from college until a meeting could be arranged between the college and Sterre’s advocates because she argued that Sterre had brought her own pa’s without permission of the college and had therefore breached college policy.

It was clearly agreed when Sterre enrolled for the course that she could bring her own personal assistants as that was the only way she would be able to communicate and achieve.

Sterre has been prevented from attending classes at a critical point in the year. The students are completing their initial induction assessments which will determine whether they can continue on the course. By excluding her now the principal would make sure that Sterre is unable to stay on the course after the induction period.

Sterre has not done anything wrong and so there is no justifiable reason to suspend her. She is only being punished for bringing in her own PA’s, something she can’t do without and so this is disability discrimination.

We must act now to make sure that Sterre can attend college in this critical period.

Anne Wafula Strike On The Unfairness Of Paralympic Classification

September 6, 2012

She’s a former wheelchair racer and she’s written this interesting article at Comment Is Free.

Gary McKinnon Ruling Due By 16 October

September 6, 2012

Theresa May has rejected an appeal by the mother of UK computer hacker Gary McKinnon to bring forward a decision over extraditing him to the US.

The home secretary will decide by 16 October, Mr McKinnon’s lawyer has said.

In July, Janis Sharp pleaded outside court for Mrs May to “show a little bit of compassion” to rule sooner.

If convicted, Mr McKinnon, who admits hacking US military computers but says he was looking for evidence of UFOs, could face up to 60 years in jail.

If Mrs May allows the extradition to go ahead, his lawyers are expected to apply for a judicial review to challenge that decision.

His lawyer, Karen Todner, said: “Should the decision from the home secretary not be in Mr McKinnon’s favour, the High Court has fixed the case for hearing on November 28 and 29.”

Mr McKinnon, from north London – who hacked into the military computers in 2002 – has been fighting extradition since 2006.

Mr McKinnon refused to undergo a medical test in the summer to see if he was fit to be extradited to the US.

Experts had said there was a high risk Mr McKinnon, who has Asperger’s syndrome, could take his own life if extradited.

Mrs May had said she was “personally concerned” he had not been examined by a Home Office-appointed medical assessor.

But his family said the expert appointed by the Home Office had no experience in uncovering suicidal tendencies in Asperger’s syndrome patients.

Can You See M.E.?

September 6, 2012

Rogue Strain Of MMR Linked To Deafness

September 6, 2012

A rogue strain of the measles, mumps and rubella vaccine has been proven to have caused deafness in at least two children, it has been claimed.Katie Stephen, who lost the use of her left ear days after being inoculated as a child, is reportedly the first known victim to prove her case to the Vaccine Damage Payments Unit.

But the 21-year-old has been refused the £120,000 payout for vaccine injury because it is only given to people with 60% disablement, according to the Times. The measure used by the Department of Work and Pensions (DWP) to decide payouts defines single-sided deafness as 20% disablement.

It comes after a second victim, who lost hearing in both ears, received compensation in a previous case, the paper said.

Miss Stephen’s mother Wendy told the Times: “She wasn’t born this way. This was done to her by the Department of Health. They distributed pamphlets arguing that this was the right thing to do for your child and not just that but the right thing to do for herd immunity in the UK against these three illnesses.”

Paul Breckell, chief executive of Action on Hearing Loss, said: “We are disappointed that the formula used by the Vaccine Damage Payments Unit does not fully recognise the impact for Katie in completely losing the hearing in her left ear.”

Miss Stephen, from Stonehaven, in Aberdeenshire, was 15 months old when she was given the inoculation in 1991. A health visitor recorded hearing problems at 18 months old, although previous tests had been normal, and in 1996 she was diagnosed with deafness.

According to the Times, her medical records show that she was deafened by an MMR jab using the rogue Urabe strain of mumps, which was given to 5.4 million British children between 1988 and 1992. In total, 10 cases of deafness after the jab were formally recorded at the time, the paper said.

An academic study found that the cause of deafness in six of those cases was unknown but MMR was a possibility, it added. Four of the suspect cases had single-sided deafness.

The Department of Health (DoH) stressed the importance of the MMR vaccine and said it had saved many lives. Director of Immunisation Professor David Salisbury said: “Uptake rates for the MMR vaccine are at their highest level for 10 years and it is the best way to protect children against all three infections.”

Dean Rodney Singers

September 6, 2012

Dean Rodney, 23, is a musician with autism. He currently has a fascinating installation on show at the Royal Festival Hall. Called Dean Rodney Singers, it’s his fantasy world that  came to him in a dream. Comfused? Emma from Ouch! went to see it and wrote this review yesterday.

South Africa Lodge Official Complaint Over Blades After Pistorius Incident

September 5, 2012

South Africa has made an official complaint that athletes are switching the size of their running blades after Paralympic star Oscar Pistorius claimed longer prosthetics gave a rival an unfair advantage.

The International Paralympic Committee (IPC) received a letter on Tuesday morning alleging that athletes had changed the length of their blades, breaking competition rules.

Staff spoke to coaches in the athletes’ village on Tuesday but found no evidence to back the South African claims.

Pistorius sparked controversy with angry comments he made after losing out on gold in the 200 metres. He alleged that Alan Fonteles Cardoso Oliveira’s use of longer blades gave him an unfair advantage.

Craig Spence from the IPC said: “When we put that allegation to the coaches there was a look of shock to be honest because running on different size prostheses or swapping them for races is extremely difficult to do for an athlete.

“There is no evidence that any athlete competed on different size running blades. Unless the South Africans can come to us with some evidence that proves otherwise, it’s something that we won’t continue investigating.”

He said that blades were measured before the heats and the final, and that running on different size prostheses would involving adapting to a different running technique.

The letter from the chief executive of the South African national Paralympic committee asked the IPC to “urgently” investigate its allegation. It also asked to meet with members of the committee to discuss the existing rules.

As things stand, it is against the rules to swap blades mid-competition, Mr Spence said.

Organisers contacted competitors in April asking them to raise any concerns about Paralympic regulations, and they heard nothing from South Africa, he added.

Daniel Roque Hall’s ‘Horror Story’ Finally Gets Guardian Coverage

September 5, 2012

For those who are following the story of disabled prisoner Daniel Roque Hall, here is an update on him, from Comment Is Free.

A Review Of The Last Leg

September 5, 2012

By Frances Ryan, for today’s Guardian.

I started watching The Last Leg on Monday.  For some reason, I thought it would be a show making inappropriate jokes about the Paralympics. But for a pleasant change, it is nothing like that. It didn’t take me long to love it. So I have to agree with the review linked above.

There are calls on Twitter for The Last Leg to continue after the Paralympics. I have to join these too. Adam Hills would make the perfect replacement for anything presented by Frankie Boyle. And if it kept its time slot, it could even keep its name!

Cameron Lies On DLA At PMQs

September 5, 2012

Thanks to the brilliant @latentexistence.

Charity Calls For Tube Ramps To Be Made Permanent

September 5, 2012

There are growing calls to keep temporary ramps that have been introduced at some Tube platforms to help wheelchair users during the Olympics and Paralympics.

On Tuesday a disability charity said the ramps had made large parts of the network accessible to Londoners for the first time.

BBC London Transport Correspondent Tom Edwards talks to wheelchair user Zara Todd and Faryal Velmi of Transport for All.

Why Can’t You Get Wheelchair Basketball On Playstation?

September 5, 2012

Someone sent this question in to Adam Hills and his team on The Last Leg yesterday and it really got me thinking. Why can‘t you get wheelchair sports games on games consoles? Or can you? If so please do let me know.

I loved Nintendo games as a young child and teenager. I have since lost interest in them, but now that I think back, I would have loved to have been able to play wheelchair sports games on my Nintendo then. But that was the 90s, Nintendos were new and triple the size they are today, and nobody ever bothered to tell me that the Paralympics existed. Recreating them for games consoles was unthought of.

However, I see no reason why today’s children and teenagers shouldn’t be able to play wheelchair sports games on games consoles. To me this seems like wheelchair dolls and teddy bears. Just like wheelchair using kids play with dolls and teddy bears, and should be able to have these toys in wheelchairs, they also play with games consoles. Wouldn’t it be brilliant if they could see themselves on computer games?

Wouldn’t it be brilliant if non-disabled children could learn through computer games that wheelchair sport does exist? This seems particularly relevant to today’s generation who have games consoles of all makes, shapes and sizes and more interest in computer games than pretty much anything else.

Adam Hills mentioned the Olympic console games released by EA Games. He said that there should be a Paralympic version too. Of course I think this is a brilliant idea. Would anyone be interested in a campaign to get such a game, if there isn’t such a game already in the works? That sounds like a pretty good Paralympic legacy to me!

 

Paralysed Chinese Man Blows Himself Up In Suicide Bombing

September 5, 2012

How sad. There are no words.

Authorities in China are investigating a suicide bombing after a man blew himself up in a government office.

After being paralysed in an accident at work, he claimed he’d been denied proper compensation.

The case highlights growing tensions in Chinese society ahead of a major handover of power.

At least six government officials were injured in the blast in Shandong province.

The BBC’s correspondent, Martin Patience, has visited the man’s village.

 

Profile: Esther McVey MP, New Minister For Disabled People

September 4, 2012

So, our new Minister is a former TV presenter. Strangely, I’d never heard of her before. Apparently she used to host a breakfast show on CBBC when I was 6.

On a serious note, she seems to have more of an interest in women’s issues than anything else, although she is a patron of a charity for disabled children.

She’s 45 and trained in law and radio journalism. She became MP for Wirral West in May 2010.

I look forward to liking her more than I like Maria Miller.

Meet North Korea’s First Paralympian

September 4, 2012

When Rim Ju Song was told earlier this year that he was going to be North Korea‘s first Paralympic athlete, competing as a swimmer, he was delighted. The fact that he barely knew how to swim didn’t trouble him unduly.

“I felt very proud and honoured to represent my country, so I did my best in the training,” he said in an interview after the heats of the men’s 50m freestyle race, in which he came 17th out of the 17 competitors, trailing 17.89 seconds behind the Cuban swimmer in first place.

His appearance has been hailed as a landmark moment in North Korea, which has historically had a poor reputation among international disability organisations for its treatment of disabled people.

North Korea’s International Paralympic Committee president, Mun Chol Kim, was among a large delegation from the country watching the race. Despite Rim’s failure to get beyond the first heat, he congratulated him on his performance, acknowledging that the 16-year-old was new to the sport.

“Our swimmer had a short period to prepare for his participation in the Paralympic Games. His record shows that his spirit is very strong and it shows his devotion to the country. People with disabilities will be happy with his performance,” he said.

Media reports ahead of the race focused on North Korea’s discriminatory treatment of disabled people, highlighting defectors’ accounts of disabled people being housed in group homes or camps and kept out of the capital Pyongyang and other major cities. Both North Korea’s IPC president and the team doctor firmly dismissed these accounts.

“That is not true. That is a story put out by people who do not understand our country. We have long paid attention to people with disabilities and with the participation in the Paralympic games, activities for supporting disabled people will bloom in the future,” Mun Chol Kim said, through a translator.

“The state has long been caring for the disabled but since the creation of our protection of the disabled organisation in 1998, care of the disabled has improved so much.”

Sung Chol Kim, the team’s doctor, added: “I saw that report in the media. It is not true.” He said sports opportunities for disabled people had begun to improve in the last few years, with disabled table tennis tournaments broadcast on television and new opportunities in boccia and powerlifting.

“When disabled people see him performing here, they get to know that there are events disabled people can participate in, so the environment will get better and better,” he said.

He also paid tribute to Rim’s determination to learn competitive swimming in a very short period of time, pointing out that he had been obliged to start learning a second stroke only three weeks ago. Rim lost both his left arm and leg as a child. “He was a naughty boy. He was playing in a construction site when he was six,” the doctor said.

Rim said he was surprised by the interest in his performance, and felt encouraged at the number of people cheering for him as he caught up with his fellow swimmers, most of whom had already finished as he passed the halfway mark.

He said he was honoured to have been the country’s first Paralympian and that he wanted to improve his performance so that he can take gold in Brazil in 2016.

Former Primary School Names Pool After Ellie Simmonds

September 4, 2012

A swimming pool at a primary school is to be named after former pupil and gold medal Paralympian Ellie Simmonds.

Staff at Cooper and Jordan C of E School in Aldridge, Walsall, said they would ask Ellie to rededicate the pool after her success at London 2012.

Ellie, 17, has won gold in the SM6 200m individual medley as well as the S6 400m freestyle.

Head teacher Robert Trawford said: “She was always a stunning swimmer and never wanted to be treated differently.”

Ellie triumphed in five minutes 19.17 seconds in London to beat the world record by more than five seconds in the S6 400m freestyle.

Victory in the SM6 200m individual medley gave Ellie her fourth Paralympic title.

Mr Trawford said Ellie returned to the school after the Paralympics in Beijing four years ago to show pupils her medals.

He said: “We want Ellie to to come and rededicated the pool when her busy schedule allows.

“We’re renaming it in recognition of her stunning achievements in this Paralympics and the last.”

What Are The Deaflympics?

September 4, 2012

If you, like me, have been wondering whether there are any deaf people competing at the Paralympics, this will answer all your questions.

UK Cabinet Reshuffle: How Does It Affect Sick And Disabled People?

September 4, 2012

Today, 4th September 2012, is the day of David Cameron’s first major cabinet reshuffle. There are three government posts that directly affect sick and disabled people:

  • Health Secretary: Breaking News at 10.45 am that sick and disabled people will like. Andrew Lansley is no longer Health Secretary. He will be replaced by Jeremy Hunt.
  • Work and Pensions Secretary: Iain Duncan Smith will keep his job, unfortunately for sick and disabled people, but not surprisingly.
  • Minister for Disabled People: I’ll update you when I know more on this later today. But I do know many who would love to see Maria Miller replaced. Breaking News 12.05pm: Maria Miller is no longer Minister For Disabled People! The disabled person in me is holding her breath to find out who will replace her. Miller has gone to Culture- the journalist in me is praying she does better in this job than she did in her last one.

Update 6.45pm: I’ve heard reports that the new Minister For Disabled People is Esther McVey MP. If and when I confirm this I’ll post a profile of her.

Citizen Khan Episode 2: Mr Khan’s Thoughts On Disabled Parking

September 4, 2012

UK readers may know that new British Asian comedy Citizen Khan has been heavily criticised since it launched last week. I am a British Asian Pakistani Muslim, like the Khans in the programme, and personally, I think the programme is hilarious.

In last night’s episode, 10 minutes in, Mr Khan shared his views on disabled parking in Mosques. I sincerely hope that these are not shared by all British Muslim community leaders! I am sharing the episode here so that you can see the clip for yourselves and, hopefully, smile. It should be available on BBC iPlayer for the next 5 weeks.

Citizen_Khan_Episode_2

MPs To Debate ATOS Healthcare And The WCA Tomorrow

September 4, 2012

This sounds like progress of a sort…

British Paralympians Speak Out About DLA

September 3, 2012

It’s good to see them using their fame for the right reasons. I thank them for this.

A group of British Paralympians have expressed their fears over government plans to cut disability living allowance (DLA), warning that the benefit is vital to enable them to live independently.

Under coalition welfare reforms, hundreds of thousands of disabled people will lose the allowance when the government replaces DLA with more restrictive personal independence payments (PIP) in 2013.

The Paralympians fear that the potential loss of the benefit, worth between £20 and £131.50 a week, which helps with the extra costs of transport, equipment, care and other specialist needs that disabled people have, could undermine the key legacy issue of the Games – to open up access to sport for disabled people.

The government plans to replace the allowance, which goes to about 3.2 million people at an annual cost of £12.6bn, with personal independence payments (PIP) from 2013. It estimates that up to 500,000 people will lose entitlement to DLA over the next four years as eligibility criteria are tightened and claims reassessed.

Ministers have argued that DLA is outdated and the switch to PIP will enable the benefit to be targeted at “people who need it most”. But campaigners say restricting the benefit will force thousands of sick and disabled people to give up work, and give back their specially adapted Motability cars.

Lady Tanni Grey-Thompson, who won 11 Paralympic gold medals, warned in May that the DLA cuts could affect the development of top athletes and prevent working-age disabled adults from engaging not just in sport but in society as a whole.

Ade Adepitan, the Paralympic wheelchair medallist who is a Channel 4 presenter for the Games, said: “Without DLA I would not have been able to do what I did or be a top athlete.”

Other Paralympians who have voiced their concerns at the proposals include:

Natasha Baker, equestrian

“Disability living allowance enables disabled people another life. If they have DLA they might be able to afford the petrol to go to work … it allows us to be independent. I love my independence. I hate relying on other people to do everything for me. I drive and probably would not be able to afford the petrol if I didn’t have the DLA. I have a Motability car. I have support from lottery fund but definitely, getting around would be a hell of a lot harder without DLA.”

Aaron Phipps, rugby

“It pays for those essential things that I need. A new wheelchair costs £1,700. I would not be able to live independently without a wheelchair like this. It is just completely essential. I would be completely lost without it. “

Kylie Grimes, rugby

“DLA is really important. It has been a massive help for me over the years. It is only in the last 18 months I have got back to playing sport properly. I have been injured now five-and-a-half years. I would have been lost without it to be honest.”

Sue Gilroy, table tennis

“I have tried not to worry about it. If they did decide to stop things it would make life impossible. I have carers at home, I have people coming to help me with the things I cannot manage myself. Obviously things are a lot more expensive. Wheelchairs, cars. £20,000 of adaptations on the car, Motability.”

Ali Jawad, weightlifting

“They need to sort it because a lot of people would suffer for not being eligible for mobility. I just hope the government have thought this through … [if they haven’t] they are going to have a lot of disabled people who are losing their independence, which is not what we want.”

David Clarke, football

“It does seem as though disabled people’s independence is being jeopardised by the government’s proposals and what worries me is that it has been done with good intentions in certain areas, but is so wide of the mark.

“DLA matters. It covers some of those additional costs that we wouldn’t necessarily have the money for.

“What DLA does is enables you to afford all the additional support you need without impinging on the income you receive. It puts you on a par with other people in society.”

Disabled People Face Fines Of £71 A Week For Not Keeping To Back-To-Work Plans

September 3, 2012

The government has drawn up plans to withdraw £71 a week from sick and disabled benefit claimants if they fail to take steps to get back into the workplace.

A leaked draft of a Department for Work and Pensions (DWP) template letter warns sick and disabled claimants they will lose 70% of their weekly employment support allowance (ESA) if they refuse to take part in work-related activities, more than doubling the current fine.

The DWP has also told the Guardian that it is finalising plans on whether to make unpaid and unlimited work experience placements part of work-related activity.

At present, those claiming ESA who have also been deemed fit to eventually return to work after controversial health assessments run by the private firm and Paralympic sponsor Atos can only be docked a maximum of £28.15 a week if they break their agreement with their job advisers without “good cause”.

But the draft letter, expected to be sent to all those in the ESA work-related activity group (Wrag), says that from 3 December the penalty will jump to £71 a week out of a maximum allowance award of £99.15.

Claimants can be placed into two groups: the support group, who are deemed to be much further away from the workplace and have few conditions placed on their benefit claim; and the Wrag group, who are assessed to be capable of taking steps towards moving into work immediately and must undertake a range of activities to help get them back to work.

Last week, Atos’s London headquarters was targeted by hundreds of protesters complaining about the company’s sponsorship of the Paralympic Games and what they said was the inadequacy of their sickness tests at filtering out those who are more seriously incapacitated.

Those in the work-related activity group have recently included people diagnosed with terminal cancer with more than six months to live, victims of strokes, those with mental health issues and people paralysed from the chest down.

Latest figures show that there are just over 340,000 people in this group and that between 1 June 2011 and 31 May this year, 11,130 of them have been sanctioned for an average duration of seven weeks.

A spokesman from the DWP said: “Ministers have spoken about toughening the benefits regime. We are not asking people in the ESA Wrag to do anything different but we have proposed changes to the regulations as we move towards universal credit. The regulations are still to be discussed in the House [of Commons].”

As the measure would go through parliament as a statutory instrument, it would normally be expected to be approved without a vote.

Charities have warned that stripping Wrag claimants of 70% of their allowance risked “devastating” consequences for people’s health, especially since a good number of those currently being sanctioned have little understanding of why they are being punished.

The draft letter warns: “From 3 December 2012, the law is changing and you could lose more money, for a longer period of time, if you do not:

• Attend and take part in work-focused interviews, without a good reason.

• Carry out work-related activities that your adviser asks you to do, without a good reason.”

Under a heading titled: What is the change?, the two-page letter goes on to explain that there will be increased penalties and punishments for those “who do not take the actions requested by the adviser”.

The letter says: “Employment and Support Allowance payments could be reduced by £71 a week until you take the required actions. After that your payments will also be reduced for an additional one, two or four weeks. The number of weeks will depend on whether you have had your benefit reduced in the previous 52 weeks.”

The plan to increase the penalty for the sick and disabled follows earlier revelations that the government wants to bring in unpaid and unlimited work experience placements for those in ESA Wrag group.

A DWP PowerPoint presentation to charities late last year explained that unpaid work experience without any statutory time limit would be a “supportive measure” where suitable to “personal circumstances”.

Following that meeting, the government passed clause 55 of the Welfare Reform Act 2012 to legally permit officials to make the sick and disabled in the Wrag group do work experience as a condition of their benefit claim.

The DWP has now told the Guardian the department has yet to finalise plans on unpaid work experience for the sick and disabled but did not rule out their introduction by 3 December.

Paul Farmer, chief executive of the mental health charity Mind, warned that the increased sanctions could devastate people’s mental health.

“It is important to remember that people in the work-related activity group have been assessed as unfit for work – they are not at full health and are still very vulnerable,” he said. “They face significant barriers to return to employment and need support rather than the threat of sanction.

“Whatever an individual’s health problems, slashing their benefit is only going to exacerbate the strain they are already under. The additional stress and anxiety incurred by the sanction – worries about paying for bills, rent and even food – risks devastating their mental health.”

He added that advisers did not have “enough mental health expertise” to understand the complexities of mental health issues and that if introduced, unpaid work experience backed up with the threat of sanctions would also “risk damaging people’s mental health” and push them even further away from the workplace.

Gillian Guy, the Citizens Advice chief executive, said lots of cases had already cropped up where benefit sanctions were applied “inappropriately, often causing great hardship”.

“People have their benefits cut with little or no warning or explanation or understanding of what they failed to do.

“If people who are judged to be too ill or disabled to work are to face having all their benefit stopped for failing to stick to their agreement, it’s essential that it’s absolutely clear what has been agreed, and that this is reasonable given their health condition or disability,” she said.

“With much harsher sanctions being brought in it’s urgent that the government starts monitoring how sanctions are used and the impact on claimants and their families,” she added.

A Child’s Eye View Of The Paralympics

September 3, 2012

“He doesn’t have one single feet, he has one foot, and the other guy, he hasn’t got two feet.”

Xand Gale, 3, is explaining the subtleties of the men’s T44 100m, which pits 19-year-old British single amputee sprinter Jonnie Peacock against Oscar Pistorius, to his mum as they skip between judo and sitting volleyball.

If there was one Olympic family, there are tens of thousands of Paralympic families. Virtually every other spectator seems to be small in stature and enormous in enthusiasm, darting between venues and only occasionally being dragged away from the world’s biggest McDonalds by a parental hand.

It is impossible to find jaundiced views of the Paralympics among spectators of all ages thronging between venues across London but the child’s eye view of these Games makes Boris Johnson’s cheerleading look like Eeyore on a particularly grumpy day.

“It’s brilliant. They are so good and they don’t have any legs. It’s amazing,” enthuses Sam Pye, 13, after watching sitting volleyball with his two brothers and mum and dad.

The Pyes are just one of dozens of families I meet who tried and failed to get tickets for the Olympics but were so inspired by what they saw on the television that they snapped up Paralympic tickets instead.

If one or two parents at first saw this as a consolation prize – a strategically useful treat at the end of the long summer holiday – no-one will admit it now racing between table tennis and swimming, discussing classifications, role models and “the little guy with no legs”.

Many of the young spectators are adamant that Paralympians are infinitely superior to Olympians. “It’s more inspiring because of how they’ve gone so low and come back fighting and sport has completely changed their lives,” says Sam. “It shows that anyone can do it.”

His older brother, Jonny, 15, was impressed by the standard of the table tennis. “We play table tennis and I could see the difference between how we can play sports and how the professionals play sport.”

Is it really as good? “It’s just as good,” says Andrew Spann, 15, firmly. “It’s harder if you’re a Paralympian than a normal Olympian – having a disability makes everything a lot tougher.”

In Olympic Park this week, elite Olympians have become “normal” – mere mortals – whilst Paralympians have been elevated to something more like Channel 4’s “superhuman” ad campaign. Young people are less self-conscious than most adults about disability and they certainly don’t feel sorry for the competitors. Lola, 11, visiting the Olympics with her mother, grandmother and best friend, insists she preferred to come to the Paralympics to the Olympics.

“The Paralympics is more exciting than the Olympics,” she says. “The ability and perseverance that the disabled athletes show encourages everyone.”

Her friend, Ruby, 11, disagrees. “They are both exciting in different ways. They are two different things. I think Olympians and Paralympians put as much effort into it as each other.”

“The Paralympians,” says Lola, “show more courage and determination”.

Before a row starts, both friends are quick to agree that the Paralympics are “more encouraging” for ordinary people than the Olympics. They are most inspired by the swimming, because they do it at school, and are amazed that anyone can even stay afloat without the use of all four limbs. “It shows that anyone can do a sport,” says Lola.

With the new term looming once again, the Paralympics also mean credibility in class. This is probably a stupid question but does it make you cooler at school if you’ve been to the Paralympics?

“A little bit,” says Jared Gale, 7, who I bump into with his mother and younger brother after first meeting them stoically waiting for two hours for a glimpse of the Paralympic torch. “Everyone’s going to be talking about it at school,” adds Jared. “Everybody is going to be saying ‘we did this, we did that'”.

For children and their parents, the Paralympics have not just been a useful diversion in that troublesome final week of the summer holidays usually governed by tedious school uniform shopping trips. For parents, the Paralympics offers a winning blend of horizon-broadening family day out, complete with “real” role models and slightly less virtuous one-eyed soft toys.

“I’ve now got role models for my children that I want them to look up to, not the Big Brothers of this world,” says Jane Gale.

Several parents say they are helping their children compile old-fashioned scrap-books of the Games to give them something to look back on, as well as look up to.

“It’s really cool. It’s good for the kids to see,” says Natasha Jeffers, who has brought her son, Alexander, 5, to see the Olympic Park and goalball. “For him to see that there are other people in the world who are different – with no limbs or can’t see – means that when he meets similar people in the real world he won’t feel scared or stare.”

Lola’s grandmother, Pat Briggs, from Tunbridge Wells, approves of how the Paralympics appears to change children’s mindsets. “It makes them more simpatico to people in wheelchairs,” she says. “It makes them see them not as second class citizens.”

Perhaps for all the consciousness-raising, tolerance-building qualities that the Paralympics may bestow on children, their clear-eyed delight in the achievements of these athletes is changing the mindsets of the adults watching the Games as well.

England’s Smallest Free School, For Autistic Teenagers, Opens It’s Doors

September 3, 2012

A free school claiming to be the smallest in England has opened its doors to its first pupils.

The Lighthouse school in Leeds has seven 11-year-old pupils, all children with autism spectrum conditions.

Within five years the school is expected to have 50 pupils aged between 11 and 19 years old.

Parents who have set up the school said the introduction of free schools made their hopes of specialist education for autistic children a reality.

The school is currently based at the Derek Fatchett City Learning Centre in Woodhouse Cliff but will eventually have its own building.

Katie Parlett, chairwoman of the trustees, said: “When the free schools initiative was unleashed… there was never really a more hand in glove situation.

“For us as a group of parents, to have a governement-led initiative that will enable us to reach our dreams was just so timely.”

Parent Sarah Cooper said: “Watch this space as I am sure all these children will just excel.”

People With Physical Disabilities Can Like Fashion Too

September 3, 2012

That’s why SE Smith wants to live in a world where physically disabled models are a normal sight. As a physically disabled woman, so do I.

Oscar Pistorius Apologises For Timing Of His Comments About Alan Oliveira

September 3, 2012

Oscar Pistorius has apologised for the timing of his comments following his loss in the final of the Paralympic T44 200m.

The South African criticised the International Paralympic Committee, saying gold medallist Alan Oliveira’s artificial legs were too long.

Pistorius said he still felt that the matter needed to be addressed.

But he added: “I want to apologise for the timing of my comments but I do believe that there is an issue here.”

The world record holder was overhauled by Oliveira in the final 20 metres of the race, won by the Brazilian in 21.45 seconds with Pistorius second in 21.52.

The IPC said all artificial legs – known as blades – adhered to strict regulations and had been verified and agreed before the race.

“I accept that raising these concerns immediately as I stepped off the track was wrong,” added Pistorius.

“That was Alan’s moment and I would like to put on record the respect I have for him.

“I am a proud Paralympian and believe in the fairness of sport. I am happy to work with the IPC who obviously share these aims.”

Iain Duncan Smith ATOS Downfall Parody

September 3, 2012

Funniest. Video. Ever. Oh, and it mentions my three favourite online campaigners!

Remploy Workers In Glasgow And Derbyshire To Start Five Day Strike

September 3, 2012

Disabled workers at Remploy sites in Glasgow and Chesterfield in Derbyshire have launched a five-day strike.

It follows a series of UK-wide strikes over the closure of many of Remploy’s 54 UK factories.

Union officials claim potential buyers of remaining sites may make redundancies based on an individual’s disability.

But Remploy said strike action would do nothing to secure the future jobs of employees.

The industrial action is being taken by members of the GMB and Unite unions.

A total of 24 Remploy factories closed last month under UK government plans to switch spending to help individual workers find jobs in mainstream sectors.

At least three other sites are expected to close later this year.

Nine other factories, including Chesterfield and Springburn, are expected to be sold off, while the future of the remaining sites has yet to be determined.

Potential buyers

GMB national secretary Phil Davies said: “Members at Remploy Chesterfield and Springburn are concerned that no information about three potential buyers has been given to them.

“The DWP (Department for Work and Pensions) has removed the obligation for a new employer to provide a pension. We understand that all three potential buyers may want to make redundancies based on the individual disability.”

In a statement, Remploy said it had received business plans for those factories which it believed could “form the basis of a sustainable and viable business outside government ownership”.

The company said formal bids would be assessed against a range of criteria, including the continued employment of disabled people by any potential new owner.

It continued: “The company hopes to be in a position next month to announce a decision on any bids it has received.

“Until then the process continues and strike action will do nothing to secure the future jobs of Remploy employees.

“We understand that this is a difficult time for employees but it is important to understand that the commercial process has been put in place to secure as many jobs for employees as possible.

“Strike action will not help us do that, nor will it help employees who will not be paid for the days when they take part in strike action,” it added.

Pistorius Criticises IPC After Brazillian Alan Oliveira Gets 200M Gold

September 3, 2012

Well, well, well. Comments welcome…

World record holder Oscar Pistorius criticised the International Paralympic Committee (IPC) after he was beaten by Brazil’s Alan Oliveira in the final of the Paralympic T44 200m.

Pistorius said Oliveira’s artificial legs – known as blades – are too long.

The South African was overhauled by the 20-year-old in the final 20 metres as Oliveira won in 21.45 seconds, with Pistorius second in 21.52.

“We are not running in a fair race here,” Pistorius told Channel 4.

“I’m not taking away from Alan’s performance but I can’t compete with Alan’s stride length.

“The International Paralympic Committee (IPC) have their regulations and their regulations mean that some athletes can make themselves unbelievably high – his knee heights are four inches higher than they should be.”

The IPC immediately denied any wrongdoing had taken place and that all blades had adhered to their strict regulations. “There is a rule in place regarding the length of the blades which is determined by a formula based on the height and dynamics of the athlete. All athletes were measured today prior to competition by a classifier and all were approved for competition,” a spokesman said.

Pistorius is understood to have made similar suggestions about Oliveira during a press huddle after Saturday’s heats and went on to claim that although it is standard procedure is for prosthetic blades to be measured before competition “the guys rarely do the measuring in the call room.”

Oliveira was also quick to defend himself. Speaking through an interpreter, he told Channel 4: “The length of my blades is all right, I went through all the procedures with the referees. Once I come inside the track it’s because it’s all been cleared up and I believe Pistorius also knows that.”

Asked if he had changed the length of his blades between the semi and the final, Oliveira added: “No. Since the first time I put them on they’ve been following the IPC rules and I’ve been using them already for a whole month, just the same blades.”

It is not the first time Pistorius has been involved in a row about artificial aids and how they affect sporting performance – although previously he was the subject of complaints.

In 2008 he was banned from competing in able-bodied events by the International Association of Athletics Federations (IAAF), which ruled that his prosthetic limbs gave him an unfair advantage, but the ban was overturned later that year.

Pistorius went on to compete at the London Olympics but now his surprise defeat in the T44 200m final has reopened the debate surrounding technology in sport.

“As I said yesterday, the IPC don’t want to listen,” he added. “The guys’ legs are unbelievably long. Not taking away from Alan’s performance, he’s a great athlete, but these guys are a lot taller and you can’t compete 1/8 with the 3/8 stride length.

“You saw how far he came back. We aren’t racing a fair race. I gave it my best. We’ve tried to address the issue with them in the weeks up to this and it’s just been falling on deaf ears.

“The guys are just running ridiculous times and they’re able to do so. I think Alan’s a great athlete but I run just over 10 metres per second, I don’t know how you can come back, watching the replay, from eight metres behind on the 100 to win. It’s absolutely ridiculous.”

Pistorius still has the 100m, 400m and 4x100m to come.

Pakistan Blasphemy Case: Imam Accused Of Planting Evidence

September 2, 2012

A Pakistani imam has been remanded in custody, accused of planting pages of the Koran among burnt pages in the bag of a Christian girl held for blasphemy.

The girl was detained two weeks ago near the capital Islamabad after an angry mob demanded she be punished.

Prosecutors say Imam Khalid Chishti will himself face charges of blasphemy.

The girl, named as Rimsha, is said to be about 14 and to have learning difficulties.

Imam Khalid Chishti allegedly told a witness, after tampering with the girl’s bag, that this was a “way of getting rid of Christians”, a prosecutor said.

The case has sparked international condemnation.

Earlier this week, a court extended Rimsha’s detention at a maximum-security prison by a further two weeks.

Her father has said he fears for his daughter’s life and for the safety of his family. He has called on Pakistani President Asif Ali Zardari to pardon her.

Rimsha’s parents have been taken into protective custody following threats, and many other Christian families have fled the neighbourhood.

Pakistan’s strict blasphemy laws are often used to settle personal vendettas, correspondents say.

Last year two leading politicians were assassinated after speaking out against the legislation.

‘Proven conspiracy’

Imam Chishti appeared in the Islamabad court with a white blindfold and shackled hands.

There was a large police presence as he was ushered into the building.

“The imam was arrested after his deputy Maulvi Zubair and two others told a magistrate he added pages from the Koran to the burnt pages brought to him by a witness,” an investigator Munir Hussain Jaffri said.

He said Mr Zubair and some others had told the imam not to interfere, urging him to “give the evidence to the police as he got it”.

According to Mr Jaffri, Imam Chishti had told them: “You know this is the only way to expel the Christians from this area.”

The investigator said the cleric had been arrested at his home on Saturday under Pakistan’s blasphemy law.

“By putting these pages in the ashes he also committed desecration of the Holy Koran and he is being charged with blasphemy,” he said.

The girl’s lawyer told AFP news agency that Rimsha “should be acquitted immediately”, as it had been “fully proven that it was a conspiracy”.

Bionic Ear Girl Speaks First Word

September 2, 2012

Emily Small told her baby daughter Evie she loved her every day for 22 months, but the girl never heard her mother’s words once.

Evie was born profoundly deaf but it was not until she was 16 months old that tests revealed she had no hearing nerves, meaning an auditory brainstem implant – or bionic ear – was her only chance of ever hearing.

The 23-month-old has Oculo-Auriculo-Vertebral Syndrome (OAV), a very rare condition with no known cause, which affects the eyes, ears and spine.

Her parents Emily and David Small, of Horndean, Hampshire, only had weeks to raise funds for Evie, then aged 19 months, to undergo the implant, or face the prospect of a life of silence.

The procedure has to be carried out before children reach their second birthday because pathways in the brain start to close up at this age.

Mr and Mrs Small were initially advised their daughter should undergo a cochlear implant on the NHS in Southampton but after asking for a second opinion they were told Evie had no hearing nerves.

“This meant a cochlear implant would not be an option as there is nothing for the sound to travel through,” Mr Small said.

“It would be like having a set of speakers and a stereo but no lead to connect them.”

If Evie’s parents, who have four other children, wanted their daughter to hear sound, an implant was their only option.

The couple had hoped Evie could be operated on in the UK, where only a handful of bionic ears have been fitted, but a team of specialists could not be assembled until after they successfully secured NHS funding from Portsmouth, which could have taken months.

Following online research the couple, both solicitors, found Professor Vittorio Colletti, a specialist doctor in Verona, Italy, who has ­successfully fitted more than 90 children with auditory brainstem implants.

‘World leading surgeon’

Mr Small, 42, said: “Only a handful of specialist surgeons worldwide can implant the bionic ear. Professor Colletti is the world leading surgeon in this field.”

When the couple were told the operation would cost 40,000 euros they set up a trust called Help for Hearing.

Mr Small said they had a cheque from a 93-year-old who said he knew what it was like to be deaf and someone else who gave them £1,000 anonymously.

“Other people raised funds through head-shaves and marathons. Amazingly the donations paid for the operation.”

The procedure, which was carried out in Verona on 25 June, saw 12 electrodes fitted on to Evie’s brain stem, which feeds sound from a microphone on the outside of her skull, which turns sounds into electronic signals which are then transmitted to the brain.

Just two weeks after switch-on, Evie was able to say her first word “mama”.

Mrs Small, 37, said: “It was heartbreaking to hear her speak her first word, it’s indescribable to put into words.”

She can now hear a wide range of frequencies and is attending speech therapy.

According to her parents she can now hear everything, including words, clearly.

Mrs Small said: “She can actually hear me when I tell her I love her now, but it will take a little time for her to understand exactly what those words mean – it’s like teaching a baby from scratch.”

Mr Small said Evie was not yet able to enjoy music but said Prof Colletti predicted that she would be able to talk on the telephone in five years.

Evie’s parents now hope to send her to Los Angeles for specialist speech therapy. They estimate the total cost of flights and accommodation to the US as well as speech therapy in the UK, will be about £20,000.

Evie will also continue to need intensive speech therapy until at least the age of five or six.

“We are continuing to fundraise for speech therapy charity for other children with no hearing,” Mr Small added.

Photos From The Paralympic Park

September 2, 2012

I took a break from blogging on Thursday to go to the Paralympics. I saw live swimming for the first time and some great close races. Here are some of my personal photos from the day, of London landmarks, Paralympic legends and leaderboards.

The Paralympic stadium

 

the Aquatics Centre

 

The Orbit

 

A Pool of Medals

Silver For Kindred…

 

and Russell

 

 

Flying Fox…

Celebrates Gold Glory

The London 2012 logo

Orbit by night

 

Stadium by night

 

 

 

 

 

 

 

 

David Blunkett Told Paralympic Seat Not Suitable For Guide Dog

September 2, 2012

I am glad he’s using his fame and status to speak out about this. Hopefully other guide dog owners will not now face this problem.

The London Games organisers are looking into how former home secretary David Blunkett came to be refused access to his seat at the Paralympics opening ceremony because he had his guide dog with him.

Mr Blunkett, who was attending as a guest of Games broadcasters Channel 4, said he was told by a “stroppy and insensitive” official that he could not take up his allocated place because it was unsuitable for his dog, Cosby.

The veteran Labour MP, who has been blind since birth and is one of the country’s most high-profile guide dog users, said he was eventually found an alternative seat behind the TV cameras “on a gantry exposed to an increasingly chill wind”.

He told the Daily Mail: “While in no way wishing to undermine the celebration of talent and courage displayed during the Paralympic Games, my experience shows how far society still has to go to change attitudes towards the challenges faced by people with disabilities.”

A spokesman for the London organising committee, Locog, said: “We have spoken to Mr Blunkett about his experience and we are looking into what happened with our venues team.”

Police Break Wheelchair User’s Shoulder In Peaceful Protest

September 1, 2012

I can’t believe this. There’s just no excuse.

Thalidomide Victims Get Apology From Makers

September 1, 2012

The makers of thalidomide have apologised to people left disabled by the drug, which was given to pregnant women over 50 years ago to fight morning sickness. But thalidomide victims are  insulted, saying this is not enough.

Personally, I think they are quite right, as the apology has come far too late.