What Would You Do?
Please take a few minutes to watch the video below. What would you do in that situation? Thanks to @dontplaymepayme.
Vodpod videos no longer available.
Primary School In Scotland Gets First Autism Award
What more proof do we need that Inclusion Rules!
A primary in Aberdeenshire is to become the first mainstream school in Scotland to receive accreditation from the National Autistic Society.
Banff Primary School was rewarded for its specialised knowledge and understanding of autism, after a team of professionals presented their review findings to an independent panel.
The school began working towards gaining accreditation in 2005.
It must now undergo further reviews every three years to retain its status.
Stephen Pyott from the National Autistic Society will officially present the school with its accreditation.
‘Powerful experience’
Head teacher Jenny Stone said: “The benefits for the school having worked rigorously through this process are many; there has been a strong element of continuing professional development that has impacted positively on every member of staff in school.
“Practice has been positively developed and enhanced across the school and this has been endorsed by the rigorous nature of the accreditation process and the very favourable outcome of the report.
“This has been a powerful learning experience for all of us in school. We are conscious that our professionalism has been enhanced and we are better equipped to meet the needs of our pupils.”
Councillor Richard Stroud, chairman of Aberdeenshire Council’s education, learning and leisure committee, said: “This is a wonderful accomplishment for the school, the staff and the pupils.
“It is vital that every pupil, no matter what their circumstances are, gets the best possible support and education and Banff Primary is now in an excellent position to achieve this.”
Campaign To Save Deaf Studies Course At Bristol Uni
This campaign has the full support of Same Difference. If anyone has a link to the petition, please post it in the comments below. As always, I would love you to share your thoughts there too.
A campaign against plans to cut a deaf studies programme at Bristol University is being stepped up.
An emergency motion was introduced at the start of the Trade Unions Congress (TUC) disability conference to back the campaign to save the course.
Protests were held in Bristol last week against the proposals which could lead to nine job losses.
The university said the degree was going for academic reasons, as part of a review of the social science faculty.
‘Academic considerations’
The TUC motion called on delegates to sign a petition on the social networking site Facebook, opposing the cuts.
Sally Hunt, general secretary of the University and College Union, said: “[The TUC], like us, recognise the incredible work the staff in the centre do delivering one of the only degree courses in deaf studies.
“Closing the course would have ramifications for deaf people throughout the country. The options available to people wishing to learn sign language, or how to teach it, would also be massively reduced.”
A spokesman for the university said: “The money-saving aspect is a secondary reason. The BSc is being withdrawn because of academic considerations.
“Part of this is to due the students’ own assessment, but also its relevance to the wider interest of the faculty.”
Researchers have discovered that where you used to live could affect your child’s chances of being autistic by up to five times.
The study looked at children whose mother had moved to the UK from outside Europe.
It showed an increased risk of autism in children whose parents had migrated from Africa, the Caribbean and Asia, the UK researchers said.
The greatest risk was for the Caribbean group, the BBC World Service reported.
Speaking on Health Check, Dr Daphne Keen, from St. George’s Hospital London, said while the findings show a clear link between immigration and autism – they could not determine exactly why this was the case.
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 Stress factors and social isolation and so forth may operate as triggers. Dr Daphne Keen
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The research covered 428 children diagnosed with autism during a six-year period.
“We didn’t find there was an increased risk in the parents who had migrated from other European countries,” Dr Keen added.
“The size of the increased risk was greatest for the Caribbean group. This was at least five times.
“The risk was also very significant, but slightly less, for the African population and much lower, but still a little present, for the Asian population.”
Two factors
The study took into consideration that it may just be a case of ethnicity – rather than migration – that caused the rise in cases.
However, researchers compared their results with children born of UK-born parents with Caribbean, African and Asian roots.
“We found when we analysed the two factors together, that the risk fell considerably.
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HEALTH CHECK
 Health Check is the weekly health programme broadcast from the BBC World Service
It is broadcast on Monday at 1032GMT and repeated at 1532GMT, 2032GMT and on Tuesday at 0132GMT
It is also available as a podcast
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“It seemed to suggest that immigration was the major factor, and ethnicity was just possibly a factor.”
One theory is that the stress of migrating could act as a “trigger” for the disability, a factor discovered in similar studies looking at the causes of schizophrenia.
“There have been some interesting studies that seem to suggest that those sort of stress factors and social isolation and so forth may operate as triggers.”
The Ouch Panel Discuss Travelling With A DisAbility
In this 15 minute live discussion, recorded at NAIDEX, Ouch’s Liz Carr and Simon Minty and Amar Latif share their experiences of travelling with DisAbilities. I’m linking this hoping that some of you may find it useful.
If you have any disability-related travel experiences or tips to share, please do in the comments below. Thanks.
Gary McKinnon’s Extradition Put On Hold
This is very good news and real progress:
The extradition of the computer hacker Gary McKinnon has been put on hold after the home secretary, Theresa May, agreed to an adjournment of a judicial review that was supposed to start within days.
The move will allow May to begin formal consideration of the medical evidence to see whether McKinnon is fit to be extradited. If it is established that he cannot be allowed to go, it paves the way for a prosecution in the UK.
A Home Office spokesperson said: “The home secretary has considered the proposal from Gary McKinnon’s legal team and has agreed an adjournment should be sought. An application to the court is being made today.”
McKinnon’s lawyer, Karen Todner, said she hoped May would make a decision on whether he was fit to be extradited in a matter of weeks.
Todner said: “The secretary of state, having recently taken office and having received further representations from the claimant’s representatives, wishes to have appropriate time fully to consider the issues in the case.” She said she hoped the decision was “a signal of a more compassionate and caring home secretary”.
McKinnon’s lawyers were granted permission for a judicial review last week – having failed to win one last year – into whether a decision by the former home secretary Alan Johnson to allow extradition and trial in the US breached McKinnon’s human rights.
The judicial review was supposed to start next week and was virtually a last throw of the legal dice. Its adjournment allows May to cast a fresh eye on what has turned into a cause celebre, and to make a close examination of the extradition agreement between the US and the UK.
Legal experts said May’s main difficulty would be to override her Home Office advisers.
“They will, perhaps, tell their minister that if she reverses the [Jacqui] Smith-Johnson decision, the Americans might take her to court for judicial review. But this is unreal: the Obama administration is unlikely to challenge, on behalf of a local state prosecutor, a decision of the new British government,” Geoffrey Robertson QC wrote on the Guardian’s Comment is free website, this week.
McKinnon’s supporters believe the new coalition government is sympathetic to their cause as David Cameron and Nick Clegg have in the past publicly criticised plans to extradite McKinnon. Last year, Cameron said any trial should take place in the UK. He said there was “a clear argument to be made that he should answer [any questions] in a British court”.
McKinnon admitted to hacking into 97 computers in the US defence department and Nasa from his London flat, and said he was looking for evidence of UFOs between 2001-2.
Despite a lengthy legal battle and strong public support for the Free Gary campaign, McKinnon has so far failed in his seven-year fight against extradition. His supporters argue that McKinnon has Asperger’s syndrome and was driven only by an obsession with UFOs. The US government argues that his hacking attempts were a deliberate effort to breach American defence systems.
If it is decided that McKinnon is not well enough to be extradited, he could then face prosecution in Britain.
The controversial case has crossed the desks of six home secretaries.
Jon Bartley On Con-Dem SEN Policy
I’d just like to link to this great article by Jonathan Bartley at Ekklesia for anyone who is interested. I couldn’t have said it better myself, but what I will do is repeat what I said when I first heard of this policy- my friends and I, and our parents, did not go through everything we have been through to be included into mainstream schools so that anyone would still be having thoughts like these long after we left school.
This post is part of the Inclusion Rules! Debate at Same Difference.
Oscar Pistorius On London Calling Yesterday
I’ve just found out that Oscar Pistorius was on 5 Live Sport’s London Calling yesterday. For those who are interested, you can listen to the programme on iPlayer here.
Welsh AMs Urge End To ‘Wheelchair Lottery’
People are having to wait much longer to get wheelchairs in north Wales compared with those in the south, an assembly committee report says.
AMs on the health committee said ministers should end what they call the “postcode lottery” of the service.
Disbility Wales’ chief executive said the wheelchair service must be “brought into the 21st Century.”
Health Minister Edwina Hart said she is already taking action to speed up the delivery of wheelchair services.
The report acknowledges inequality in wheelchair provision across Wales could be due to there only being two main Artificial Limb and Appliance Service (ALAS) centres – in Wrexham and Cardiff.
But it says such disparity is “unacceptable” and calls on the assembly government to draw up a plan to give direction to the service.
Other recommendations include better integration of wheelchair services with other services and the pooling of budgets to provide equipment for users.
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They do not spend sufficient money to make us independent Marion Harrison, wheelchair user
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Committee Chair Darren Millar AM said: “It’s clear that there are problems in many areas, including long waiting times, particularly in north Wales.
“We also heard that users with complex needs, including children, can suffer the longest waits.”
Life ‘on hold’
Wheelchair user Marion Harrison, of Hawarden, Flintshire, said she’d felt her life was “on hold” during the six months she waited for an appropriate chair, but she knew of other people who’d had to wait for 18 months or longer.
Mrs Harrison said her mother, who suffers from dementia, had been issued with the correct wheelchair within the last year, having waited for close to 10 years.
“For a ‘bog standard’ wheelchair the turnaround is very good… you get them left, right and centre because they’re the cheapest ones,” said Mrs Harrison.
“If you want a specific chair or a lightweight one this is where things become awkward and you can’t get one.
“They do not spend sufficient money to make us independent.”
Mrs Harrison added that she had worked with children with disabilities who had been very frustrated to find that by the time they were issued with a wheelchair, they had outgrown it.
Equality of access vital
Welcoming the committee’s call, chief executive of Disability Wales Rhian Davies said the wheelchair service in Wales needed to be “brought into the 21st Century”.
“The wheelchair service needs to be much more responsive, much more flexible because without a wheelchair people are stuck at home and become dependent on friends and family to support their mobility,” she added.
A coalition of nine Welsh disability organisations including Barnardo’s Cymru, Disabled Children Matter Wales and MS Society Cymru said the cross-party group of AMs had exposed real concerns about the existing service.
Minister to consider findings
A Welsh Assembly Government spokesman said: “The health minister is already taking action to improve access to wheelchairs and reduce waiting times so she will consider whether the committee’s findings and recommendations are still appropriate.
“Although the vast majority of wheelchairs are delivered to patients within 21 days of referral, in more complex cases waiting times are sometimes longer.”
He said Wales provides patients with the largest range of equipment in the UK as a deliberate strategy to best meet clinical needs, but this positive factor could have a negative impact on waiting times.
He added that new measures to speed up access to wheelchairs included the establishment of a single organisation for managing and delivering equipment and new all-Wales indicators to show performance across the country.
BBC Sport – London 2012 unveils Olympic And Paralympic Games mascots Wenlock & Mandeville
Vodpod videos no longer available.
London 2012 organisers have unveiled cartoon animations named Wenlock and Mandeville as the mascots for the Olympic and Paralympic Games.
Focus groups of children and families helped form the designs and children’s author Michael Morpurgo added a story concept for an animated series.
“We’ve created our mascots for children,” said Locog chair Lord Coe.
“They will connect young people with sport, and tell the story of our proud Olympic and Paralympic history.”
The characters are named after the village of Much Wenlock in Shropshire – which hosted a precursor to the modern Olympic Games in the 19th Century – and the birthplace of the Paralympic Games, Stoke Mandeville hospital in Buckinghamshire.
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Children told us a number of things: they weren’t that sold on furry animals and they actually wanted a story
Lord Coe
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The Wenlock Games gave inspiration to Baron Pierre de Coubertain as he formed his concept of the modern Olympics in 1896.
Olympic motifs chime through the design: Wenlock wears the Olympic rings as friendship bracelets, and although predominantly silver in colour, also contains flashes of gold and bronze.
Mandeville’s head reflects aspects of the three crescent shapes of the Paralympics symbol.
In a deliberate homage to London taxis, each has a yellow light on top of its head, with an initial in the middle.
Mandeville and Wenlock will feature in an animated series
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In author Morpurgo’s vision, the pair begin life as two drops of steel from a factory in Bolton, taken home by a retiring worker who fashions characters out of the metal for his grandchildren.
They appear to have a single central eye, explained as a camera lens, through which they’ll see the world, and respond to it.
In a series of animated updates, linked to the official games website, they will be seen learning to play different Olympic sports in a narrative that will be regularly revised between now and the opening of the Games.
“The children told us a number of things: they weren’t that sold on furry animals and they actually wanted a story,” Coe added.
“Youngsters will be able to make a case for the mascots coming to their school if they’ve done something that is inspired by the Games. It’s a way of engaging in a fun way.”
The mascots are an important revenue generating tool for the Games, and Locog’s commercial partners were consulted throughout the design process.
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ROGER MOSEY’S BLOG
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They will also be used to front London 2012’s Get Set education programme, which will focus in part on the Olympic values.
Both will have their own Facebook and Twitter pages, with an emphasis on interactivity.
The mascots will also form a key part of 2012’s marketing and merchandising, with organisers keen to avoid the controversy which surrounded the unveiling of the Games logo in 2007.
There was widespread criticism of that particular emblem, which was designed by the Wolff Olins agency and cost £400,000.
A segment of animated footage to promote the logo was also claimed to trigger seizures in a small number of people, prompting it to be removed from the Locog website.
But Locog refused to bow to pressure, saying that the logo, which comes in pink, blue, green and orange, was modern, bold and flexible.
The first official mascot – Waldi, a colourful striped dachshund – appeared for the 1972 Summer Games in Munich.
But it was the 1984 Olympics in Los Angeles which saw the first commercial mascot, Sam the American eagle.
Family Tributes To “Beautiful, Happy” Glen, 11
The family of an 11-year-old boy, found dead at a hotel, have paid tribute to a “wonderful, beautiful happy boy”.
Meanwhile, Glen Freaney’s mother Yvonne, 48, has appeared before Cardiff Crown Court accused of his murder.
Glen, from Penarth, Vale of Glamorgan, who was severely autistic, was found dead at a hotel near Cardiff Airport after police were called on Saturday.
Mrs Freaney made a brief appearance in court and was remanded to a mental health clinic until next month.
In a tribute, released by South Wales Police, the family said: “Glen was a wonderful, beautiful happy boy, our family are extremely proud of him, especially his achievements, despite his condition.
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Glen will be deeply missed by all of us and will constantly be in our thoughts Family tribute
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“It cannot be underestimated how much Glen was loved by all of us.
“He has deeply touched us during his time with us. We are all devastated by this tragedy.
“Glen will be deeply missed by all of us and will constantly be in our thoughts.
“We asked that our privacy be respected so we can deal with our sad loss as a family.”
The headteacher at Glen’s school, Ashgrove in Penarth, also paid tribute to a “lively character” who would be “greatly missed by all that knew him”.
Chris Britten, said: “His love of drawing led to a prize from the mayor earlier this year. Indeed, anything or anyone standing still for long enough would soon become part of Glen’s art work!
“Glen was at his happiest when playing outside on the bikes and scooters with boundless energy. He thoroughly enjoyed watching all types of transport especially lorries and fire engines, which would result in him jumping with excitement.
Yvonne Freaney from Penarth, in the Vale of Glamorgan, will appear again in court next month
“Glen was a huge part of Ashgrove – he was mischievous and loveable and will be remembered by staff and pupils with great fondness.
“Our thoughts and prayers are with Glen’s family as they, like us, struggle to come to terms with our loss.”
Vale of Glamorgan council is providing support to pupils and staff at what it described as a “very difficult time”.
South Wales Police said they had been called to the hotel in Rhoose on Saturday.
The last confirmed sighting of Glen alive was on Thursday.
Officers have appealed to anyone who saw Glen at the Sky Plaza Hotel last week to contact them.
They said family liaison officers remained with the family, with the investigation into the circumstances surrounding his death ongoing.
Anyone with information is asked to contact the incident room on 01656 679 585 or Crimestoppers on 0800 555111.
A disabled woman from Denbighshire who injured a supermarket worker with her mobility scooter has been ordered to pay £13,110 in compensation.
But a judge at Rhyl County Court said Gloria Brown, from Rhyl, could pay £100 a month, after the 61-year-old feared she would have to sell her house.
It comes after Mrs Brown’s scooter hit the member of staff’s trolley in the Denbighshire town’s Morrisons store in 2005, injuring her knee.
She will appeal against the decision.
The mother, whose disabilities include osteoarthritis, previously claimed her scooter was stationary in December 2005 when a customer using a scooter provided by Morrisons collided with hers, sending her crashing into a trolley being used by a member of staff.
Four months later, Mrs Brown was told she was being taken to court by the injured woman.
In January, the county court found her liable and ordered her to pay compensation and legal costs.
However, on Tuesday, the court agreed that Mrs Brown can to repay the debt at £100 a month, over the next 12 years.
But because of the length of time the legal bill will take to be paid, Judge Merfyn Jones-Evans also agreed to secure the debt against Mrs Brown home in Rhyl.
But the judge was keen to stress that her home was not under threat, as long as she continued to meet the monthly payments.
“The ball is in your court,” he told Mrs Brown.
‘Vulnerable’
Speaking after the hearing, Mrs Brown said the decision over her £80,000 house, where her daughter and 74-year-old husband live, was a “weight off my shoulders”.
But she insisted that her fight to overturn the original negligence claim was not over.
“It puts me in a vulnerable position – do I ever go shopping again?” she said.
“This is taking away the rights and the human rights of disabled people to live as near a normal life as possible and to be independent.
“I’m not going to stop here. How many disabled people have we got in the British Isles? How many people drive these scooters? We can’t just sit down and take this.”
Despite having no legal aid for the civil case, Mrs Brown and her supporters said they had found a solicitor willing to take on their fight at the appeal courts in London.
Mrs Brown said if necessary, she would take it to the European courts, and had already secured a case number in Europe, if her appeal fails.
A 31-year old mother who was partially blinded in a car accident eight years ago has been taught to ‘see’ again.
Experts say it is thanks to pioneering techniques developed at Durham University.
Nichola Burlison, who is married with two young children, lost half her vision on the same side in both eyes when she suffered severe brain damage as a result of the accident.
She has a condition called ‘half blindness’ or hemianopia.
Following the accident, she stayed in hospital for six months re-learning basic skills such as walking, talking, dressing and eating.
New training
She then returned to her home in Low Willington, County Durham, but still required a great deal of help and remained heavily dependent on others.
It was only when she contacted the charity Action for Blind People, that she became involved in a study which she says has given her a new lease of life.
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I am more comfortable with reading and I don’t miss words at the start of sentences any more Nichola Burlison
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The study, run by Durham University’s psychology department, tested patients’ visual ability before and after their new type of training.
Researchers found that patients became faster and more accurate at detecting objects, such as coloured dots or numbers on a computer screen.
“The training had made a big difference to me,” said Mrs Burlison. “Although I still struggle with basic things like crossing the road, reading and cooking, I feel so much more confident.”
Big boost
“I am more comfortable with reading and I don’t miss words at the start of sentences any more.
“I also move my eyes around, both to the left and right, because I am more aware than I can do that.”
Researchers believe the tests helped patients to compensate for their lost vision by exploring their “blind field”, the part of the visual field affected by the brain damage.
“I was really surprised that I could do more than I thought after the training.
“It gave me a big boost and I would love for other people in my position to become aware of this as it may help them too,” Mrs Burlison said.
The researchers ultimately hope to make the training available to patients on their mobile phones or hand-held games consoles.
London To Get It’s Own NAIDEX Exhibition
Many thanks to @enabledby who have just tweeted the link to the website of NAIDEX South– a disability exhibition organised by the people who bring us NAIDEX Birmingham, to be held in Excel London on 29-30 September 2010.
More information will be available on Same Difference as I get it, so if you’re interested in this, please watch this space!
And The New Minister For Disabled People Is…
Yes, fortunately, David Cameron did appoint a Minister For Disabled People in the end- though he has changed the name of the post to Parliamentary Under Secretary Of State For Disabled People. Anyway, the post has gone to Maria Miller MP. She’s been MP for Basingstoke since 2005, and has already campaigned for improvements to the Blue Badge Scheme. Same Difference will be looking out for her in the news over the next five years!
A Little Tribute To A Truly DisAbled Person…
I woke up this morning to some sad and shocking news. A good friend of mine died yesterday. One of the things we had in common was our disability, and so the news hit me hard. I’m not really sure whether I should be blogging about this, right now, or even ever. Some might say it’s too soon to write about such a thing, or even that something this private should not be shared with the Internet. But a very good writer once told me that when something bad happens to writers, they just sit and write.
Besides, when blogs were first invented, they were described as online diaries. Over the last three years, I have found this blog to be a very good listener. At times, I have written things here that no one in my offline life even knew. And this has always helped me. I’m hoping that it might help me again today.
As you know, my blog posts don’t usually come from personal experience. But I’ve always said that I think times like these are when disabled people need their blogs the most. So today I want to share with you the poem I’ve written in tribute to my friend, who I won’t name here. What I will say is that I’m thinking today of her family and of all the friends we share, and also of anyone else who has ever lost a friend to severe disability.
Another Gap In My List
There was a time when your smile, your love, your presence in my life
Filled a gap- the one left by someone else who left us too soon.
I never forgot him and I never will
But thanks to you, some of the space he left in my life was possible to fill.
So we shared some special moments
Some smiles after many tears
We shared some friends
And probably some enemies as well, over the years.
I said once to you that I never make the same mistake twice
And I’m so glad I didn’t.
That would have been too high a price to pay.
For what we have always shared, long before we knew each other
Is this disability that knew us both better than we knew ourselves.
There was a time when I used to say it was the best one to have because it didn’t, couldn’t, wouldn’t kill
Now I know only too well that it not only can but it will.
It’s this disability that today has taken you too soon
Leaving me with another gap in my list of friends.
I’m wondering today who will ever fill this gap
But one thing I know, as you watch me today
No doubt enjoying the view from the Moon
It’s not quite Mars- or maybe it is- we don’t know.
Anyway, the one thing I do know
Is that today I’ll make you the promise that I once made to our best friend-
I’ll be there for those you love the most, because, you know, I would have wanted you to say the same to me, if my life had been the first to end.
Chelsea Hollis
Vodpod videos no longer available.
It’s seven o’clock in the morning and 10-year-old Chelsea Hollis is in the kitchen.
It’s an early start to her day and after putting the kettle on she has to wake up her mother and make breakfast.
“Do you want a coffee?” she says, before putting bread in the toaster and guiding her mother, Maria, to their living room table.
Maria is registered blind and it is Chelsea who takes care of her.
“I wake up before my mum and I watch the TV a bit,” she said.
“Then I make her coffee and breakfast and make mine. It feels quite good looking after my mum because I like helping people.”
Stressful childhood
Chelsea has been helping Maria since she was five years old and at times she finds it stressful.
“I do feel good looking after my mum, but sometimes I need to have a break and play.
“Every time I try to play I hear my name because she is stuck, it can be really difficult.”
According to the 2001 census there are 175,000 carers under the age of 18 in the UK, but experts believe the number could be even higher.
Linda Howells says there are eight young carers at her school
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Research by the Princess Royal Trust for Carers suggests that more than quarter of young people who care for a sick or disabled family member suffer from stress trying to juggle their responsibilities at school and home.
The study found that two-thirds of young carers were also victims of bullying at school.
Maria worries that she relies on Chelsea too much.
“She helps when we go shopping because in the shops people are ignorant. When you ask where something is they just say, ‘over there’,” Maria says.
“I can’t do without her, but I think that I shouldn’t really rely on her a lot because she is only a child.
“She needs her life and her fun and that can be a problem when she has to do so much for me.
“She gets stressed a lot and she has problems at school.”
‘Quite isolated’
Chelsea attends Lovelace Primary School, in Chessington, and is one of eight young carers among the 507 pupils.
However, head teacher Linda Howells thinks this number could be only half of the story.
“There may be many others,” she said.
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I think about her all the time in case she doesn’t make it home. It worries me a lot Chelsea Hollis
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“We try and know all our children well, but it is not always easy to discover a child is a young carer, especially if they come here part way through their academic term. They might not want that known.”
The school supports young carers and investigates all cases of bullying, but Mrs Howells admits it is a challenge to try and help the young people forget their responsibilities.
“I think because those children can’t take part in activities that all their peers can and they might not be able to discuss the reasons why they can’t go.
“They can feel quite isolated and left out. They can quite easily become victims of bullying.”
Difficult feelings
Maria worries her daughter may be bullied.
“She doesn’t really tell me when there are problems at school,” the mother-of-one said.
“The only way I know is when she gets really quiet and gets withdrawn, that is when I find out about the bullying and everything.
“She doesn’t find it easy to make friends.”
The family visits a centre for young carers in Kingston, which gives Chelsea a chance to spend time with other young people like her.
“They’re really good at talking to me about my feelings,” Chelsea says. “I have to stop talking about feelings because I don’t want it to affect my mum.”
Street dangers
Like many young girls, Chelsea has pictures of film star Zac Efron on her wall and her bedroom is covered in pink, from the walls to the floor.
Ten-year-old Chelsea helps her mother with daily tasks such as shopping
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But unlike her school friends she has the responsibilities of an adult, watching over her mother to ensure she does not trip over or bump into lampposts in the street.
“It should be the other way round,” said Maria.
“You should be helping your children. It should be me keeping her safe and making sure nothing happens to her, not her watching me when I go down the road.”
Chelsea’s school is a short bus ride from her home and the pair arrive, with daughter guiding mother down the path.
“Have a safe journey back,” says Chelsea, as she watches her mother start the trip home on her own, with only her cane for guidance.
“I think about her all the time in case she doesn’t make it home,” she said.
“It worries me a lot.”
Young Carers Bullied at School, Study Finds
Children as young as six who look after their sick or disabled parents are routinely being bullied at school, according to research published today.
The study found more than two-thirds of young carers face taunts from fellow pupils, who often mock their parents’ appearance or disabilities. Many said they felt unsupported or misunderstood by teachers when they became tired, missed homework deadlines or could not get to school because of their responsibilities.
More than 13,000 children and young people in the UK spend more than 50 hours a week caring for a dependent family member or friend, many taking on adult roles without any outside support.
Some 39% of the 700 six to 18-year-olds questioned for the Princess Royal Trust for Carers and the Children’s Society said there was not a single teacher at their school who knew they were a young carer. Of those whose teachers did know, more than half did not feel supported.
Helen Leadbitter, national development worker for young carers at the Children’s Society, said most bullying took the form of jeering about the physical or learning disabilities, or mental health problems, of carers’ parents.
“Young carers also often feel isolated and may not have time to socialise if they’re having to go home to carry out their responsibilities,” she said. “Sometimes they feel they mature faster than their peers and can’t mix that well. Because they’re not mixing with the group that can lead to bullying.”
Chelsea Hollis, 10, is the sole carer for her mother, Maria, who lost her sight two years ago. She helps with shopping, cooking and washing and clearing up, as well as making sure her mother is safe when they go out together, but is often shunned by other children.
“It’s difficult at school because when I do my work I’m always distracted thinking about my mum. I’m really scared she will hurt herself,” she said. “Other children give me a hard time.
“The way people treat me makes me feel quite sad. I feel like I’m not going to have a good future because I haven’t got that many friends and I don’t really get to play that much.”
Lorraine Digance, who suffers from ME, fibromyalgia, and a neurological condition that can sometimes leave her temporarily paralysed, said her 12-year-old son, who helps to care for her together with his sister, eight, had been bullied by children who laughed at her appearance.
“I’ve put quite a lot of weight on and I use a walking stick, and sometimes I’m in a wheelchair,” she said. “It’s enough to deal with that, but it’s quite another thing to know that your kids are having to deal with the fallout. It’s heartwrenching. When you’re a parent you just want to protect your children.”
More than one-third of those questioned said they worried about the person they cared for when they were at school, and a quarter suffered from the stress of juggling schoolwork and caring responsibilities.
Carole Cochrane, chief executive of the Princess Royal Trust for Carers, said: “It is shocking to discover that so many young carers have to endure bullying, mental health problems and a lack of support from their teachers, all because they care for a family member who is unable to cope without their help. Sadly, without the right support, many young carers will underachieve or drop out of school altogether, which has a long and enduring impact on their future prospects.”
The two charities are launching a poster campaign to run in all UK secondary schools highlighting the work of young carers, and providing information to help schools support pupils.
Engineers Invent Off Road Wheelchair
Two engineers from the University of Bath have invented an off-road wheelchair – called the Mountain Trike – to enable disabled people to cover terrain that has previously been off limits to them.
Tim Morgan and John Wardle have set up a company to market their device and they aim to formally launch trike at the Rehacare disability exhibition in Dusseldorf this autumn.
“The idea came from my love of mountain biking and my passion for the great outdoors,” Tim Morgan told the BBC.
He says that he realised that there was no “off-road” wheelchair on the market to take people to the sort of places that he likes to visit on his mountain bike.
“So I set about inventing the Mountain Trike – an all-terrain wheelchair that allows people to go anywhere.”
Easy steering
The Mountain Trike was part of Mr Morgan’s final year masters project at Bath University.
Mr Morgan says that after some excellent feedback from disabled people who tried his first prototype, he realised that he was onto something and filed a series of patents.
The trike has two large wheels either side of the user and is steered by a small castor-type wheel at the rear.
It has fully-independent, air-sprung suspension to absorb some of the knocks encountered on rough ground in either a rural or an urban environment.
It is propelled by pushing forward on two levers connected to the front wheels – what Mr Morgan describes as “mechanical advantage”.
The Mountain Trike has taken four years to develop and is now in its final stages before production begins.
Racing wheelchairs are more common but are made to go off-road
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“We need to work on various optimisations to reduce the weight before we go to production and we need to do various safety tests before we can sell it,” said Mr Morgan.
Co-designer John Wardle, who studied alongside Mr Morgan in Bath, was brought onboard to resolve some of the technical issues encountered in the early prototypes.
He says that he has been responsible for the steering mechanism which has made the trike turn much more smoothly than would have been the case if “differential braking” had been relied upon to steer.
He sees the potential for using the trike in competitive sporting events.
“Now that cross-country mountain biking is an Olympic event, there could definitely be long-distance or indoor events for mountain trikes – I think there is a lot of scope for that.”
One wheelchair user said he had enjoyed trying out the Mountain Trike and had tested it in muddy conditions in a country park.
Wayne Philbrick from Worcester said that he felt non-disabled people would also find use for the trike.
Guiding hand
In order to give their invention the best chance of commercial success, Bath University put the young engineers in touch with David Rogers – a former head of Amstrad and Phillips.
“This product had a particular appeal for me because, some time ago, I spent three months in a wheelchair,” he said.
Mr Rogers says that he quickly learned how disadvantaged people were when attempting to travel independently.
“Even in towns and cities, cobbles and kerbs can present significant obstacles.”
He thinks that the Mountain Trike is intended for a new market altogether.
“It’s akin to the start of the Range Rover where previously there wasn’t an off-road market: it sits between the so-called attendant wheelchair and the specialist, sports wheelchairs.”
He says that initially the company would like to distribute the product through spinal injury units and rehabilitation centres but eventually would like to see it for sale in high street mountain bike shops.
The Mountain Trike certainly won’t be cheap – in part, according to Mr Rogers – because high quality mountain bike components have been used.
“We looked at the prices of comparable mountain bikes and we looked at the prices of some of the more exotic, sports wheelchairs – that seems to suggest a market price of around £4,000,” he said.
Janis Sharp Hopeful Of UK Trial For Gary McKinnon
The mother of UK computer hacker Gary McKinnon says she is “confident” the new coalition will halt his extradition to the US as early as next week.
Janis Sharp said the Conservatives and Liberal Democrats promised before the election he would be tried in the UK.
They would not want to be the type of government which broke its promises as soon as it took power, she said.
Glasgow-born Mr McKinnon is accused of breaking into the US military computer system and faces 60 years in jail.
The 43-year-old, who has Asperger’s syndrome, says he was on a “moral crusade” to find classified documents about UFOs.
‘Gary’s nightmare’
Ms Sharp has spearheaded a public campaign to keep her son in the UK, and many opposition politicians at the time, including David Cameron and Nick Clegg, were critical of Labour for allowing the extradition.
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It (the coalition) has said goodbye to the old thing of saying one thing and doing another and I totally trust they will do as they have said Janis Sharp
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She said she had “total trust” that the new coalition would “honour its promise”.
“We are expecting, probably next week, for them to end Gary’s nightmare and halt the extradition process permanently and allow Gary to be tried here as promised,” she said.
“This government is new, it’s fresh and they don’t want to be seen as the kind of government that is going to break its promises as soon as it gets in.”
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ANALYSIS
Alex Bushill, BBC News
Janis Sharp knows about detail. She can quote legal precedent and judicial rulings. The reason is simple: She is fighting to keep her son Gary McKinnon in Britain.
She says the process of being extradited to the US is punishment enough for Gary, who has Asperger’s syndrome. She tells how he worries about catching a bus, hates to leave home and wouldn’t dream of travelling abroad. But now he faces being sent across the Atlantic to stand trial for allegedly hacking into the Pentagon’s computer systems. Ms Sharp believes the extradition treaty she’s been fighting for five years is unfair. She quotes the public endorsements she’s had from Nick Clegg and David Cameron calling for her son’s ordeal to end. But that was when they were in opposition. Does she worry they won’t keep their promises now they are in government? “I’m sure they will”, she says, “how could this new politics mean more of the same old lies?” |
They would not want to “wreck their reputation” so early on, she added.
“It has said goodbye to the old thing of saying one thing and doing another and I totally trust they will do as they have said,” she said.
His legal team has already made “representations” to the new Home Secretary Theresa May to overrule the decision to allow his extradition.
At the end of this month, a judge is due to rule on whether the previous home secretary Alan Johnson was wrong to allow the extradition.
But Ms Sharp said her son’s lawyers had applied for this judicial review to be cancelled because they were so “confident” his extradition would be stopped.
Meanwhile, the Foreign Secretary William Hague has promised the government will take a fresh look at extradition arrangements between the UK and the US.
The computer systems Mr McKinnon – now of Wood Green, north London – is accused of breaking into include those at the Pentagon.
The American authorities say his actions in 2001 and 2002 caused $800,000 (£487,000) damage but this is something he disputes.
Peter Clarke
In September 2003 48-year-old Peter Clarke from Hall Green in Birmingham suffered such severe injuries in a head-on road crash, nobody thought he would survive.
He pulled through, but his injuries affected his ability to breathe, eat and walk – and he was unable to speak.
He learnt sign language so he could communicate with his carers and now seven years on Mr Clarke is using that skill to help others.
Mr Clarke suffered a diffuse axonal injury (DAI) – a serious brain injury which often results in the patient falling into a coma, and his heart stopped twice during surgery.
Recovery has not been easy. “I feel like I was born on the day I woke up in hospital,” he said.
“Other people have to tell me what I was like before the accident, as I have no recollection of that life.”
Ongoing treatment
Before the crash Mr Clarke worked as a lorry driver, but has been unable to return to his previous job.
“But I had to move forward and have never lost track of my goal,” he said.
He is still receiving ongoing treatment, and has had to develop coping strategies to deal with disabilities which affect his memory, walking, breathing and eating.
He will have to return to Birmingham’s Selly Oak hospital for ongoing treatment every four months for the rest of his life.
“I am just glad to be alive and I am looking forward to helping other people rebuild their lives again,” he said.
Mr Clarke was on his way to work when another car collided with his
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Since his accident, and with the help of Birmingham Adult Education Service, Mr Clarke has gained a Level 1 qualification in British Sign Language.
He also won the service’s Outstanding Learner of the Year award at the city council’s Shining Star awards last year.
Mr Clarke now helps deaf patients to communicate whilst in hospital, and is supporting Adult Learners’ Week in the West Midlands to encourage others to get involved with adult education .
He said: “It’s all down to your approach to learning – there is assistance out there to help you progress.
“Some people don’t know where to go, but they shouldn’t give up.”
Birmingham Adult Education Service is one of the largest providers of adult learning opportunities in the West Midlands, offering over 4,000 part time courses each year to more than 25,000 learners.
‘Determination’
Learning support manager Maggie Plummer had no idea of the extent of the injuries Mr Clarke had suffered when she met him.
She said: “When you consider what he has been through and all of the gruelling treatment he has had to endure, you realise that his determination and sheer strength of will is incredible.
“He has not only learnt sign language, he’s had to learn to walk and talk again.”
Mr Clarke suffered a double fracture to his right leg
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Adult Learners’ Week comprises of a number of events promoting the benefits of all kinds of learning.
Spokeswoman Jo Knight said: “We want adults to re-engage with learning and take the first steps back into education.”
Now Mr Clarke plans to extend his work in adult education, helping people with learning disabilities.
He said: “It has been traumatic but I hope to show people that there is life after terrible trauma.”
The driver of the vehicle that collided with Mr Clarke’s car in Northamptonshire received minor injuries and was later convicted of dangerous driving at Corby Magistrates court.
Scientists have made delicate ear cells in a dish paving the way for a cure for deafness.
Grown in their thousands, the delicate hairs could be transplanted into the inner ear, restoring hearing to millions.
Some confidence-zapping balance disorders could also be eased, the researchers believe.
Scientists have created inner ear hairs, which are the linchpin of hearing and balance. They help convert vibrations made by sounds into nerve impulses that can be decoded by the brain
The breakthrough – which comes after 10 years of painstaking research – could also speed the search for new drug treatments that could prevent people from becoming hard of hearing.
Age-related hearing loss affects one in two Britons aged 60 and over and there is currently no way of holding it at bay.
Although it is often dismissed by younger people as a minor irritation, it can have a devastating effect on self confidence and cause sufferers to become socially isolated.
The stigma associated with going deaf means patients take an average of 15 years to seek help.
Hearing aids can amplify the sounds sufferers hear but nothing can give them back the hearing they once had.
The research, from the prestigious Stanford University, suggests that stem cell science could succeed where other branches of medicine have failed.
The scientists perfected the recipe for turning stem cells – ‘blank cells’ with the chameleon-like ability to turn into other cell types – into the delicate hairs found in the inner ear.
The linchpin of hearing and balance, these hairs help convert vibrations made by sounds into nerve impulses that can be decoded by the brain.
Ageing, noise and general wear and tear all lead to them withering away and, until now, there was no way of replacing them.
The hairs produced looked and acted like the real thing, the journal Cell reports.
How We Hear
1. Sound waves travel through the funnel of the outer ear to the eardrum, making it vibrate, and setting off a chain reaction.
2. The three smallest bones in the body – the hammer, anvil and stirrup of the middle ear – start moving, passing the vibrations to a thin layer of tissue at the entrance of the inner ear called the oval window.
3. Pressure on the oval window squashes the fluid in the inner ear, creating waves in the canals of the snail-shaped cochlea.
4. Delicate hairs in the cochlea convert this movement into nerve impulses which are carried to the brain by the auditory nerve.
5. The brain decodes the information and tells you what you are hearing.
Researcher Stefan Heller said: ‘We knew it was really working when we saw them in the electron microscope.
‘They looked more or less like they were taken out of the ear.
If the same technique can be applied to human cells, within 10 years it might be possible to use transplants of the delicate hairs to restore hearing.
Using slivers of skin the patient’s skin a source of the all important stem cells would mean that any hairs generated would be a perfect match for the body.
It also raises the tantalising possibility of creating drugs that coax the ear into growing more hair cells of its own accord.
Professor Heller said: ‘For some reason we’ve lost this mechanism but it must still be there.
‘We could now test thousands of drugs in a dish. Within a decade or so we could reap the benefits of this type of screening.’
Lead researcher Dr Kazuo Oshima said: ‘We’ve made hair-like cells in a petri dish. This is an important step towards development of future therapies.’
David Corey, a Harvard University expert on the workings of the inner ear, said: ‘This gives us real hope that there might be some kind of therapy for regenerating hair cells.
‘It could take a decade or more but it’s a possibility.’
Dr Ralph Holme, of the Royal National Institute for Deaf People, said: ‘Loud noises can cause the cells to be damaged and they are gradually lost in the ageing process as well.
‘And once they have gone, they don’t come back again, which is why it is so important to find ways to regenerate them.
‘The possibility that stem cells could one day be used to restore hearing is really exciting and could benefit millions.’
RNID-funded researchers have already succeeded in turning human stem cells into hair cells. However, they did not look quite as much like the real thing as the US ones.
The Sheffield University scientists are now using the lab-grown hairs to attempt to restore hearing to deaf animals.
They are also trying to work out how to grow the hairs in large numbers, while ensuring they are safe enough to be one day put into human ears.
Zara Roberts
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 For the first time I have realised my disabilities are accepted and I will work and lead as normal a life as possible Zara Roberts, Adult Learner of the Year
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A woman who overcame a car crash, multiple injuries and brain damage to become a teacher has been named Wales’ adult learner of the year.
Zara Roberts, 24, of Llangollen, Denbighshire, was honoured as “an inspiration to others” at an awards ceremony run by NIACE Dysgu Cymru.
“Zara has overcome incredible obstacles,” said the adult learning organisation’s director Richard Spear.
Ex-rugby star Scott Quinnell also won a special award for battling dyslexia.
Ms Roberts picked up her Inspire! award at Cardiff’s Coal Exchange after also being named as Wales’s young adult learner of the year.
The evening capped a remarkable comeback for her after she was involved in a serious motor vehicle accident in 2004.
“I suffered traumatic brain injury, five broken ribs, punctured lung, fractured pelvis, elbow and ankle and tore the descending aorta from my heart,” said Ms Roberts.
Scott Quinnell overcame dyslexia at the age of 33
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“I had to learn to talk, walk and do everything from scratch like a baby.”
Before her accident, Ms Roberts was on her way to university to become a teacher, specialising in special needs.
In spite of her injuries she achieved an NVQ in support teaching at Coleg Llysfasi, Rhuthun.
While working on the course in a primary school, her tutor arranged a visit to a special school.
Following a meeting with the head teacher, Ms Roberts was offered voluntary work for three days a week.
‘Confidence’
In September 2009 she returned to the school on a full-time basis.
“The learning experience has given me my confidence back,” said Ms Roberts.
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ADULT LEARNER AWARD WINNERS
Further Education Learner of the Year: Terri George, Ebbw Vale
Community Learner of the Year: Ian Whitehill, Newport
Basic Skills Learner of the Year: Rachael Williams, Cardiff
Senior Learner of the Year (joint): Ada Evans, Merthyr, and Sybil Coleman, Swansea
ESOL Learner of the Year: Lutala Kabe, Newport
Welsh Learner of the Year: Margaret Odyomo, Chepstow
Community Action Group Award: The Gathering, Cardiff
Higher Education Learner of the Year: Tracey Hudson, Cardiff
Distance Learner of the Year: Katrina Sumner, Wrexham
Workplace Learner of the Year: Martin Dilworth, Prestatyn
Vocational Learner of the Year: Zoe Smith, Powys
Family and Intergenerational Learning Award: Central Infants Family Learning Class, Neath
Director’s Award (joint): Scott Quinnell, Monmouth, and Mike Rivers, Neath
Source: NIACE Dysgu Cymru
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“For the first time I have realised my disabilities are accepted and I will work and lead as normal a life as possible.
“I would love to be employed as a support worker for special needs children, as to a certain degree I understand their frustrations. I hope to show them that like me, they too can succeed.”
Ms Roberts’ neurologist, Bob Rafal of North Wales Brain Injury Service, said: “We sometimes speak of rehabilitation as a battle, requiring tenacity and exceptional effort by the patient.
“If the analogy is correct, then Zara is a happy warrior and one of my heroes. She has the heart of a lion.
“She has not only overcome handicaps in mobility and speech to regain full independence but she has also steadfastly focused on the goal of preparing herself to help others.”
Mr Spear, director of NIACE Dysgu Cymru commented: “Zara really stands out as an example to others.
“She has overcome incredible obstacles to gain the experience and qualifications to help others, and is an excellent ambassador for adult learning in Wales.
“She was planning to become a teacher, suffered an horrific set back, had to learn to speak again, and is now on the road to becoming a teacher. If that’s not resilience, I don’t know what is.”
Quinnell, the former Llanelli, Wales and British Lions star, was the joint winner of NIACE Dysgu Cymru Director’s Award.
Unable to read or write until he was 33, his achievement in overcoming dyslexia was an inspiration for many adult learners, the organisation said.
Wheelchair User Joins In Football Pitch Invasion
The video below shows a wheelchair user joining in a football pitch invasion after a match last weekend. Like Whizz-Kids, who linked to the information on Twitter, I don’t agree with football hooliganism (or particularly like football) but I don’t see why any football fan who wishes to invade a pitch should be stopped from doing so by a little detail like a wheelchair, either!
Vodpod videos no longer available.
Every morning Christian Kandlbauer wakes up, dresses himself, and gets in his car to drive to work.
This may sound mundane, but for the 21-year-old Austrian these are remarkable feats.
Doctors say he is the first person in the world to drive a car using a mind-controlled robotic limb.
Four years ago Christian lost both his arms after being electrocuted by 20,000 volts. Now he is able to control all of the joints in his left prosthetic arm by merely thinking about what he wants his arm to do.
He has a conventional prosthetic fitted on his right side.
Experts at the medical technology company, Otto Bock Healthcare, which developed the mind-controlled arm, say it is the first project of its kind in Europe.
On Wednesday, they will announce at an international conference in Leipzig, Germany, that the technology is ready to leave the laboratory and be put to everyday use.
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It is like my earlier arm – I feel that my arm is a part of my body Christian Kandlbauer
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“UK patients could benefit in the next few months,” says Dr Hubert Egger, head of the research and development project for the mind-controlled arm.
“Christian is the first patient in Europe where this surgery was done, and the first person in Europe with this mind-controlled prosthetic. In the future we hope to fit patients in the UK with prosthetics like this.”
Dr Egger’s team is publishing detailed surgical and technical guidelines for the mind controlled arm.
It involves a new technique known as targeted muscle reinnervation (TMR), where nerves that once controlled a lost limb are used to control a prosthesis.
A ‘sensory hand’ may follow
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Christian was the “guinea pig” for the four-year research project.
Surgeons at Vienna General Hospital transplanted the nerves that previously controlled his healthy limb to the chest muscles in a six-hour operation.
The transplanted nerves allow electrical impulses from the brain to reach the muscles in the chest.
The muscles act like a booster, amplifying the signal to a level that can be picked up by electrodes on the surface of the chest.
These signals are interpreted by a micro-computer, and used to control a prosthesis which responds in real time to thoughts from his brain.
This allows him to control his prosthetic arm as if it were his real arm.
Now Christian can drive, hold down a job, and even grasp a glass of beer.
“I feel very happy,” he told the BBC in a telephone interview. “It is like my earlier arm – I feel that my arm is a part of my body.”
Lighter, stronger
Scientific improvements are bringing prosthetics ever closer to the real thing.
They are now lighter, stronger, and more cosmetically appealing.
But not all amputees may be able to afford advanced prosthetics. There is already a large discrepancy between what is available on the NHS and the expensive prosthetics provided to soldiers.
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How it works
When phantom limb is ‘moved’ electrical impulses from the brain move along grafted arm nerves into chest wall
Muscles boost electrical sensors and they are picked up by electrodes on surface of skin
Signals analysed and converted into a pattern that can be used to control the prosthetic using artificial intelligence
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Ernie Stables of the British Limbless Ex-Service Men’s Association (Blesma) says anything that is likely to improve the quality of life for amputees is welcome. But he says expense will be a factor.
“Limb centres across the country are pretty poorly funded as it is,” he explains. “And I expect this initiative will be prohibitively expensive in NHS circles.
“So yes, it is a significant advance, and UK patients could potentially benefit if the funding is there.
“The private option is an avenue but only very few people can afford to go down that route.”
Otto Bock says it is difficult to put a cost on the procedure. The research project behind Christian’s prosthetic cost several million euros.
It says the cost will come down when the prosthetic goes into production.
Four years on, Christian has returned to work as a warehouse clerk at the garage that once employed him as a mechanic.
He has little memory of his accident and the days that followed.
He says it was strange when the limb was first fitted as he couldn’t imagine that it would work.
Now, he is simply grateful that he has the freedom to get on with his life.
“With the prosthesis I am able to do things in my daily life alone without the help of another person,” he says. “I am independent.”
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Damon Goodson
A DETERMINED amputee is celebrating after kicking ass in a martial arts competition — despite having only ONE LEG.
Brave Damon Goodson, 26, can execute moves including Indian death locks, the outside parry and scissor choke holds, even though he had his right leg amputated in 2003
He can even kick-box using a special technique developed by his instructor where he balances on his prosthetic leg, to prevent it FLYING OFF.
The NHS health trainer lost his lower right leg to cancer at the age of 19.
But he refused to be beaten, took up mixed martial arts in 2007 and is now a jujitsu blue belt competing against able-bodied fighters.
Damon now spends 12 hours a week in training.
On Saturday he reached the fourth round of the Wakarishin and Kokoro Kai International before being knocked out by the eventual bronze medallist.
Damon, from King’s Lynn, Norfolk, said: “Being an amputee does make it a bit difficult.
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“When you are on the floor and grappling you need to be able to bend but I haven’t got that sort of flexibility.
“When it gets sweaty the bit that holds the leg on can slip off, which must give my opponent a bit of a shock.
“I want to show that having a prosthetic limb does not have to hold you back.”
Damon’s trainer Master Dell Mann, of the Cobra Academy of Kickboxing, said his student was a role model for other amputees.
He said: “I have adapted some of Damon’s skills. He has shown that people with a disability can do it as well, if not better, than anyone else.”
Meet The Mail’s Carer Of The Year
It was a day when the great and the good gathered to honour the unsung heroes who devote their lives to caring for others. Yesterday, at a gala awards ceremony at the Marriott hotel in Central London, a host of celebrities applauded the tireless efforts of the five finalists in the Mail’s Carer of the Year Awards. The event was held in association with Bupa and was in aid of the Alzheimer’s Society. Thousands of entries were submitted by readers, but in the end it came down to one winner.
Every morning, Anne Ravenscroft gently wakes her beloved daughter Heidi so that she can wash and dress her ready to start the day.
Later, as she carefully spoon-feeds Heidi her breakfast, Anne chats about the weather, and the birds she can see through the window, in between telling her daughter what a very special girl she is.
All day long, Anne is there to wait on her daughter’s every need – be it changing her nappy, feeding her, lifting her up, or taking her for walks. Nothing is too big or small a demand.
But Anne is no new mother getting on with the daily routine of caring for her baby: she is 81 and a grandmother.
And her 46-year-old daughter is so severely disabled that she can’t speak, walk or do anything without her mother’s help.
Heidi has a neurological condition called Rett Syndrome, which has left her doubly incontinent, physically and mentally impaired, and unable to communicate. She cannot even get into her wheelchair by herself.
Ever since she was born, her main carer has been her mum, Anne – a remarkable lady for whom slipping into old age and enjoying the chance for her children to look after her has never been an option.
For 46 years, Anne has thrown herself into this exhausting role, and continues to fulfil her daughter’s every need with the energy and vigour of a woman many years her junior.
‘It was absolutely devastating when Heidi was diagnosed, especially to know there was nothing we could do to cure her’
And it is for this unstinting devotion and tireless dedication that Anne has been crowned winner of the Daily Mail Carer of the Year awards.
Our panel of judges chose Anne because of her unfaltering patience and kindness, and the good grace and modesty with which she continues to carry out this role at an age when even the most dedicated carer might be thinking of retirement.
Her husband Reg, an 82-year- old retired Kodak technician from Gloucestershire, nominated her, supported by their two other daughters and son.
Reg says he has always been in awe of his wife – and of the incredible love and devotion she has shown not only to Heidi but to the whole family.
Reg recalls: ‘It was absolutely devastating when Heidi was diagnosed, especially to know there was nothing we could do to cure her.
‘But Anne was tremendous. She never bemoaned her lot, never looked for honour or reward; she just did her job, which was to care for her daughter.
‘She has only ever acted out of love, and she has never stopped caring for Heidi, even when her own bad health has got in the way. In fact, winning the award won’t change her life one bit, because she truly is selfless through and through.
‘The award will actually mean as much, if not more, to me and our other three children. Finally we get to see my wife, their mother – a wonderful lady, who every day makes us feel proud and blessed to have her in our lives – honoured for her incredible dedication to the little girl who has never stopped needing her.’
Anne admits that her relationship with Heidi is unique.
‘I suppose, on paper, it doesn’t really seem possible,’ she says with a smile. ‘Here you have an 81-year- old pensioner looking after her 46-year-old daughter. Anyone reading that would say that it should, surely, be the other way around.’
In fact, Heidi was a perfectly normal baby when she was born in 1964. She was the picture of health, and up until the age of 18 months was like any other baby. She’d started walking and talking, and was proudly calling Anne ‘Mummy’.
But the last time Anne heard that word was 44 years ago, when Heidi was two. Not long after that, Heidi began a regression from which she was never to recover.
Over a period of five years, Heidi, the youngest of Anne and Reg’s four children, lost the ability to feed herself, to sit unaided, then to use her hands, until, finally, she could no longer walk.
But medical science was not as advanced as it is now, and despite a battery of tests, no doctor was able to diagnose Heidi’s condition.
‘Heidi was a bonny, happy little thing, who had started to walk and talk,’ says Anne. ‘She was the baby of the family, and we all spoilt her rotten. She was bright, and funny, and brought such joy to us all.
‘I still look at photographs and films we took from that time and wonder at how quickly and dramatically everything changed.
‘I remember the doctor telling us that they had no idea what had caused it. He sent us away with the words: “This is your problem – and probably will be for the rest of your life.”
‘I looked at my beautiful little girl and vowed there and then that I would never see her as a problem, but as a blessing. And even now, that is precisely what she is to me.’
By the age of seven, Heidi was so ill she was confined to a wheelchair.
‘It was like caring for a newborn again – but one that can’t even cry,’ says Anne. ‘She literally couldn’t make a sound, and it broke my heart that my daughter couldn’t express what she was feeling to me.
‘Heidi’s condition has never improved. She still can’t speak, walk or move unaided, or feed herself. All that has changed over the years is her body, which has become that of a woman.
‘Looking after her is physical work, with a great deal of lifting, so it’s fortunate that Reg and I have stayed fit into our old age.’
Not that Anne feels her age. ‘I don’t feel any older now than I did 40 years ago,’ she says. ‘Looking after Heidi has kept me young.
‘That’s one of the many things that I’m thankful to her for. It’s an incredible thing still to be so needed by someone at my age. In many ways, that feels like a gift in itself.
‘When I do get tired, I don’t think “Poor me”, I think “Poor Heidi”. I often wonder what life might have been like for her if she hadn’t been born with this condition. Thinking of what she has missed out on has always been my inspiration for making sure that she feels loved and wanted by me.’
Heidi was in her 20s when her parents saw a TV programme about Rett Syndrome, a neurological disorder that predominantly affects girls, and recognised all the symptoms in their own daughter.
Professor Rett, the doctor who had discovered the condition, confirmed the diagnosis some months later.
‘Up until then, we’d looked after her following common sense. We fed Heidi, we kept her clean and warm, and we loved her.
‘We made sure that she was included in every aspect of family life. She came on every holiday, on every day out, and was there at every birthday party and special occasion.
‘Getting a diagnosis didn’t change any of that. There was nothing anyone could do to help her beyond what we were already doing. The only difference was that now her condition had a name.’
Up until Heidi was 33, Anne continued to be her main carer.
But when Anne developed breast cancer, and needed surgery and radiotherapy treatment, arrangements were made for Heidi to go into a care home dedicated to adults with Rett Syndrome.
‘It was heartbreaking, letting her go,’ says Anne. ‘But at that stage we didn’t know whether I would get better, so we needed some back-up.
‘We also had to deal with the fact that Reg was 70 and I was 69. Even if I did recover, the chances were that Heidi would outlive us both, and arrangements had to be put in place for when we were gone.’
Happily, Anne did make a full recovery. She not only continued to care for Heidi, she even nursed Reg back to health when he had open-heart surgery in 2005 following a massive heart attack.
Now, Heidi splits her time between the care home and her family home, spending at least 12 days every month with her parents.
‘It’s hard work,’ admits Anne. ‘We eat our breakfast at eight, and then we get Heidi up, washed and fed. If the weather’s nice we take her for a walk in her wheelchair; otherwise we just sit and chat with her in between mealtimes and remind her how very loved she is.
‘We give her lots of cuddles and continue to include her in all that we do. It doesn’t feel like very much to me, because it’s what we’ve always done.’
When Heidi goes back to the home, Anne says that she and Reg miss her terribly.
‘Heidi can’t speak, she can’t laugh and she can’t cry. But when she’s gone, the house feels horribly quiet.
‘I know that Heidi is happy when her eyes shine a little brighter, and sometimes I even catch a brief glimpse of the faintest of smiles. When she’s sad or uncomfortable, a tiny furrow appears on her brow.
‘But beyond that I can’t know what she’s feeling or thinking. The main thing for me is that my daughter knows that I love her, and I only have to look into her face to feel sure that she does.
‘Heidi has taught me a level of compassion and understanding that no one else could. She has given my life great purpose and meaning, which is a gift far greater than anything I have ever done for her.’
Anne’s eldest daughter, Suzanne, says that she speaks for all her siblings when she says that their mother has been a great influence on all their lives.
‘Mum never grumbles and she never complains, no matter what life throws at her. She has taught us, by example, that no problem is insurmountable, and that love and family truly are what matter most.
‘We grew up believing that our sister was special rather than handicapped, and somehow Mum still found the time and energy to make us all feel special, too. She really is an incredible woman, and we’re so proud that she has been acknowledged in this way.
‘In our eyes, all carers are unsung heroes – but what’s special about Mum is the fact that she’s been doing this for so long, and will continue to care for our sister for many years to come. She’s not just Carer of the Year, she’s Carer of the Century.’
Meanwhile, Anne says that while winning this award makes her feel happy and proud, it won’t make her life any richer than it already is, because nothing ever could.
‘I’m very touched that other people have seen good in what I’ve done,’ she says. ‘There are so many carers who are never acknowledged, and perhaps need a little more help than they are getting right now.
‘I hope our story will make people think about the many other carers out there who are just getting on with it, just as we always have.
‘I’m fortunate in that I’ve always had lots of support, especially from my husband. We really are a great team.
‘But for my part, I have only ever done what has always come naturally to me when faced with my vulnerable and helpless child. Looking after Heidi has felt like a privilege every step of the way. Thanks to her, and all of my children, I’ve known more joy in my life than heartache.
‘My daughter has never felt like a burden, and caring for her has never been a chore. Heidi is my child and she still needs me. That’s all there is to it.’
From One Disability Link To Another…
The UK, as of tonight, no longer has a disabled Prime Minister. Gordon Brown has left Downing Street- and politics, apparently.
Now, you may be thinking that means I’ll finally stop blogging about politics. You’re wrong. You see, David Cameron had a disabled child, Ivan.
So, the big question is- who’ll be better at running our country- a disabled person or a special parent? Same Difference looks forward to finding out.
I gave my reaction to the new Paddy Power advert here at Same Difference last month, when the advert was first released, so I am very pleased to read this article, pasted below, from the Guardian. I hope the ASA investigation leads to the advert being removed from public viewing.
The advertising watchdog is to investigate a Paddy Power TV ad featuring a team of sight-impaired footballers accidentally kicking a cat into a tree after receiving more than 400 complaints that it is offensive and encourages cruelty to animals.
The campaign, which launched last month, forms part of a major marketing push in the run-up to the World Cup.
Despite the ad being approved by Clearcast, the body that vets TV items before their broadcast, the commercial has hit a nerve with the public, with more than 400 lodging complaints to the Advertising Standards Authority.
The ASA said most complainants claimed the ad was offensive in the way it portrayed sight-impaired people and because it “might encourage or condone cruelty to animals”. The ASA added that it has launched an investigation to ascertain whether the commercial breaks the advertising code.
To gain clearance, Paddy Power ensured the TV ad featured some genuine sight-impaired footballers – several of whom are likely to represent England in this summer’s World Blind Football Championships, including the team captain, Ajmal Ahmed – rather that featuring only actors.
However this would not be known to viewers, which may go some way to explaining the significant number of complaints the ad regulator has received.
Gary McKinnon’s Lawyers Lobby Theresa May
For once, I agree with David Cameron!
The new home secretary has been urged to overrule her predecessor’s decision to allow the extradition of UK computer hacker Gary McKinnon.
Mr McKinnon’s lawyers have made “representations” to Conservative Theresa May as part of a long campaign to prevent a US trial for their client.
A judge is due to rule on whether the previous home secretary Alan Johnson was wrong to allow the extradition.
Both David Cameron and Nick Clegg have previously criticised the move.
The new Foreign Secretary William Hague has not commented on this specific case but has promised a fresh look at extradition arrangements between the UK and the US.
Glasgow-born Mr McKinnon, who has Asperger’s syndrome, is accused of breaking into the US military computer system. He says he was seeking evidence of UFOs.
Judicial review
The computer systems Mr McKinnon is accused of breaking into include those at the Pentagon. If convicted, the 43-year-old – now of Wood Green, north London – faces 60 years in prison.
Mr McKinnon’s lawyer Karen Todner said the solicitors firm Kaim Todner had asked Mrs May to “intervene and prevent the extradition”.
“We hope the new Liberal-Conservative Government will act upon their previous public statements that it would be unjust to extradite Mr McKinnon,” she said.
Last year, Mr Cameron said that if Mr McKinnon had questions to answer there was “a clear argument to be made that he should answer them in a British court”.
In January Mr McKinnon’s legal team was granted permission for a judicial review of Mr Johnson’s decision that sending him to the US for trial would not breach his human rights.
Election candidate
At the time the Home Office said it had “noted” the court’s decision.
Liberal Democrat leader Nick Clegg said the judicial review was “heartening news” and said he hoped the courts would “display more courage than our ministers”.
Mr McKinnon’s mother, Janis Sharp, has often spoken of the stress of the long campaign.
Speaking earlier this year she said: “We’ve fought for so long for compassion and understanding. Gary’s health has badly declined, it’s been traumatic to see.”
Earlier this month she stood for election as an independent in Jack Straw’s Blackburn constituency, saying she blamed the justice secretary for pushing through the extradition treaty with the US.
She came last with 173 votes.
PC Blinded In One Eye After Manchester Derby Attack
A police officer was blinded in one eye after being hit by a missile after the Manchester derby.
The 24-year-old was trying to deal with a disturbance among rival fans outside the City Manchester Stadium last month when he was hit by an object.
He was taken to Manchester Royal Infirmary and now only has partial sight in the injured eye. It is not known if this will be permanent.
Police have issued a CCTV image of a man they want to speak to.
The officer was outside gate seven, on Ashton New Road, when the incident happened on 17 April.
‘Mindless thug’
Greater Manchester Police said the missile was thrown by one of a number of fans leaving the stadium after the match.
Supt Jim Liggett said: “The officer was simply doing his job, trying to ensure the match passed off safely and enjoyably for fans, when some mindless thug threw something at him.
“He may now be permanently blind in one eye as a result and, sadly, this incident demonstrates what can happen when objects are thrown indiscriminately and the dangers faced by police officers every single day.
“I would like to hear from anyone who knows the person in the image as he may have vital information about who may be responsible.”
Martin Brooks
Yet another special father. The iPhone seems to be doing amazing things for DisAbled people who don’t have verbal communication. Is your child in this situation? Do leave your comments below.
A proud father told of his joy today at giving his severely disabled daughter a “voice” for the first time – by building her an iPhone app.
Martin Brooks, 42, created the app after he became increasingly frustrated at not being able to understand what his five-year-old daughter Mia Brooks wanted.
Bright Mia was deprived of oxygen at birth causing her to develop Cerebral Palsy which has left her unable to walk, talk or control her movements.
Mia has severe cerebral palsy. Her father has created an iPhone app to help her communicate. She uses it by pointing her eyes at different pictures on his iPhone
She has only ever been able to communicate by “pointing” towards different objects with her eyes, movements which were often difficult to interpret. But while using his first iPhone last August, Martin was inspired by the “apps for everything” slogan and the handset’s easy-to-use colourful controls.
He set about creating a program to let Mia communicate with him and her mum, Sarah Phelan, 42, who is Mia’s full-time carer, based on her eye pointing.
Now after nine months of development, the courageous tot uses the software to tell her parents whether she is hungry, thirsty or wants to do something.
Dubbed the ‘iComm’, Mia points to a series of pictures on the iPhone screen using eye movements to show what she wants to do.
The app displays four images at a time on the iPhone screen of different needs, people or activities which Martin holds up in front of Mia.
She then indicates one of the images with her eye movements which Martin taps to reveal another screen which present different types of food or activities.
Martin, who runs a communication training company, said: ‘It has given her a voice for the first time and allowed us to understand her so much better.
‘Mia is cognitively alert, but unable to communicate, and I was afraid that as she grew she was not going to be able to tell us what she wanted.
‘I had a very strong concept in my head. I wanted to create an iPhone app to take Mia’s eye-pointing to the next level.
‘Mia finds it engaging that she can see pictures of herself doing an activity which gives her a greater sense of choice and loves seeing pictures of her friends and family.
‘Also it’s given us a form of reciprocal communication. Now I can ask her what she has been doings and she can reply. It’s allowed Mia to become much more sociable.
‘Another great thing about the iPhone is that it’s portable, so we can use it when Mia is out and about.’
Martin Brooks created the iComm app that can be bought from Apple iTunes
Using the app, Mia can now tell her parents what she wants to eat or do, as well as answering question such as what she has done at school or which friends she has played with.
It also allows users to upload their own pictures of themselves, of friends, of their favourite foods and activities so that they can instantly recognise the images.
Users can even upload their own voice rather than a generic computer generated voice to create a fully personalised app.
He engaged the services of iPhone app creators Bappz to help him with the design and the app came out in March.
It was created for children with severe disabilities like Mia, or children suffering from communication difficulties such autism.
Martin has received emails of thanks from parents of disabled children around the world who are overjoyed at the new freedom of expression the application allows.
But he has since discovered the app can also prove invaluable to frustrated parents who find it hard to work out what babies and toddlers want before they begin to speak.
He added: ‘I initially created this for my daughter and children like her, but people pointed out to me that children of nine or ten months could also benefit.
‘The app can be used by anyone who wants to communicate but cannot verbalise what they want.
‘But if it helps one other person with a special needs child like Mia then it will be worth it.’
A basic version of the iComm app is free to download from the Apple store and the full version, usually £15.99, is currently available for £1.79.
Since its release in March, around 1,300 people have downloaded the iComm and Martin is currently working on a new reading app for children, iSpy Phonics.
More information on the iComm and iSpy Phonics can be found at www.miasapps.com
A police watchdog has cleared an investigation into the death of a disabled schoolboy at an activity centre after complaints by his parents.
Thomas Frost, 15, from Penarth, Vale of Glamorgan, died on July 4, 2003 while on holiday near Bodmin in Cornwall.
His father, Gregory, said the police inquiry into his son’s death was “incompetent and negligent”.
However the Independent Police Complaints Commission (IPCC) found it had been “thorough and proportionate.”
The schoolboy, an Ysgol Erw’r Delyn pupil who suffered from cerebral palsy and epilepsy, was found dead in bed while attending the Churchtown Farm residential activity centre in Lanlivery, near Bodmin.
Officers with the Devon and Cornwall Constabulary launched an investigation into the death and concluded it was non-suspicious.
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Mr and Mrs Frost have had to endure the death of their child while he was away from their care and support. This must be unbearably hard for them and I have every sympathy for them and their grief Rebecca Marsh, IPCC Commissioner
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As a series of forensic tests were not carried out during a later post mortem examination, a cause of death was never ascertained.
Mr Frost passed on 16 complaints to the IPCC against the investigation, all of which were later withdrawn.
But the police watchdog regarded them as so serious it decided to go ahead and fully investigate them anyway.
IPCC Commissioner Rebecca Marsh said that all 16 of Mr Frost’s complaints had been looked at in detail.
‘Reasonable’
The IPCC concluded that the officers who had attended Churchtown Farm residential activity centre had acted properly in how they had secured the bedroom where Thomas had been found.
It also exonerated the way they had interviewed the centre’s staff and Thomas’s school, whose responsibility it was to look after Thomas.
“The police conclusion that the death was not suspicious was reasonable,” said Ms Marsh.
The post mortem examination and forensic tests were not part of the IPCC’s remit nor the responsibility of the police officers, she said.
Following Mr Frost’s complaints, the activity centre, the pathologist and two coroners had been subject to examinations by public agencies, Ms Marsh pointed out.
‘Tragic’
These bodies had been contacted by the IPCC for further information about what had happened at the centre and who had responsibility for different aspects of Thomas’s care.
“The subsequent police investigation followed force policy and procedures and considered the possibility of foul play,” she said.
“It reasonably decided that this was not a suspicious death.
Ms Marsh said Thomas’s death had been “tragic” for his family and friends.
“Mr and Mrs Frost have had to endure the death of their child while he was away from their care and support,” she said.
“This must be unbearably hard for them and I have every sympathy for them and their grief.”
Prosthetic Foot Up For Engineering Prize
A prosthetic foot that mimics the muscle actions of real feet has been short-listed for the UK’s top engineering prize.
Four projects are on the shortlist for the MacRobert prize which gives a £50,000 cash prize to the winning team.
Other projects on the shortlist include a better landmine detector, high-speed satellite broadband and a greener way to make acrylic plastic.
The overall winner of the prize will be announced on 7 June.
Muscle mimic
Unlike other false feet, the Echelon prosthetic foot and ankle uses hydraulics to help it align itself.
Before now walking with many types of prosthetic foot has been a conscious process in which an amputee must think about where and how to put their foot down. By contrast, the carbon fibre springs and hydraulic dampers in Echelon combine to put it in the right position as it is put down to take a step.
This means it can cope better with inclines and the hydraulics are arranged so they spread the load of the body like real muscles.
Some soldiers fitted with Blatchford’s Echelon prosthetic have been able to return to combat duties.
Project To Boost Opportunities For Autistic People
The project seeks engagement between autistic people and schools and employers
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A project providing training for schools and businesses to raise awareness of autistic spectrum disorder (ASD) is to begin in parts of Wales.
Deis Cyfle, which means “opportunity” in Irish and Welsh, aims to provide greater opportunities for autistic school-leavers and job seekers.
The three-year project is a collaboration between Autism Cymru and the Irish Society for Autism.
The scheme will be officially launched at the Senedd on Monday.
Autism Cymru said levels of understanding and awareness about ASD among typical post-school providers such as companies, higher or further education and leisure services were often minimal, and in some cases were misinformed.
The charities have developed a three-day training package and self-evaluation tool, with material tailored for secondary school teachers, further education and leisure providers, and employers.
The project will be run in Gwynedd, Anglesey, Pembrokeshire, Carmarthenshire, Swansea, Wrexham and Flintshire, and through parts of the Irish Republic.
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I have no doubt that I am happy and succeeding at school because of one thing – and that is awareness. I’m sad to say this hasn’t always been the case Thomas Pinder
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Lynn Plimley is the project manager for Deis Cyfle.
She said: “The understanding and knowledge of the issues for people with ASD is critical to achieving success in the world of work, leisure and further and higher education.
“Without knowledge and understanding behaviours and actions can be easily misinterpreted with often negative consequences.
“By developing relevant training and awareness raising packages, teachers, employers, lecturers, leisure workers and other service providers will appreciate the many gifts and competencies of people with ASD as well as understanding where the individual is coming from.”
The project has received European Regional Development funding for three years.
She added: “It is hoped that the data and research generated through the activity of the project will sustain the work beyond the end of funding and enable the training to be delivered across the whole of Wales and Ireland.”
Thomas Pinder, a Year 11 student with Asperger syndrome, said he did not see the condition as a weakness or disorder, but as a difference.
“I have no doubt that I am happy and succeeding at school because of one thing – and that is awareness. I’m sad to say this hasn’t always been the case.
“Awareness of Asperger’s and autism is essential. I know, as someone who has Asperger’s, how many times I have told somebody that I have it, only to be greeted with a blank face and shrugged shoulders.
“More and more members of the public need to be aware that Asperger’s Syndrome and autism do exist and that people do have it.
“I know that when I leave school and go to university and into employment, it would make my life much easier if staff and colleagues were aware of my disorder.”
The launch takes place at the Senedd at 1730 BST.
Dayniah Manderson
This is a long, but amazing, story of true DisAbility that has just landed in my inbox. Please take some time to read and enjoy it.
The former head of care at a special school in Hertfordshire has been found dead on the eve of his trial for alleged sex offences against boys.
David Harris, 63, who worked at Hilltop Special Boarding School, Stevenage, was found dead in bed at his Plymouth home after police forced their way inside.
No apparent cause of death has yet been established.
Mr Harris failed to appear for trial on Tuesday charged with sexual offences on five boys between 1972 and 1990.
Warrant issued
Mr Harris had been due to appear at Luton Crown Court charged with offences against the boys, aged seven and eight at the time.
When he failed to turn up at court a bench warrant was issued by Judge Richard Foster.
Then, on Wednesday, the news reached the court that police who had entered his home in Knighton Road had discovered a body.
Judge Foster adjourned the case until Friday when the court heard a post-mortem examination is to be held to establish how Mr Harris died.
He was in bed when the officers found him, but Ann Evans for the prosecution said no suicide note had been found.
Had the trial gone ahead, the prosecutor said five men now in their 30s and 40s would have come to court to tell a jury that they were sexually abused by Mr Harris when they were pupils at the school.
Case closed
Mr Harris faced 30 charges alleging he had carried out serious sex offences and acts of indecency on the youngsters. The school has now closed.
The court heard Mr Harris had been due to plead not guilty to all the charges.
Mrs Evans said as a result of his death, the indictment against Mr Harris had no legal effect.
Judge Foster agreed and ordered the file on the case should be closed.
Today’s edition of The Big Questions featured the question “Do special schools lead to discrimination?”
Studio guests said what I’ve been saying for a long time- that inclusion is a good thing and that David Cameron’s view is a personal one.
If you missed this and would like to listen to it, the episode should be available on BBC iPlayer soon.
I’ve written a lot about special schools at Same Difference so I won’t repeat myself, but the big question is, readers, what do you think?
This post is part of the Inclusion Rules! Debate at Same Difference.
Where Do We Draw The Line?
I have a question for you tonight, readers. It came up in a discussion I had with some people today. I asked them whether an allergy could or should be described as a disability. One thought that an allergy definitely isn’t a disability, another said that an allergy could be disabling at times.
Personally, I have spent my life around such severe disability that to me, allergies don’t come close to being anything similar. My question to you is, readers, what do you think? Should allergies be classed as disabilities? Where do we draw the line between what is and what isn’t a disability? Please discuss.
What Is IH?
This is a guest post by Victoria Taylor, in assosiation with the IH Research Foundation. Victoria is the author of Caitlin’s Wish, a children’s book for young carers. Thanks to Victoria and to all at the IH Research Foundation.
So what is IH?
IH is an invisible illness where the person looks “fine” when they are not! That is why I am taking this opportunity to help raise awareness for IH and the Intracranial Hypertension Research Foundation (IHRF), which is working hard to improve the lives of people affected by IH.
“Intracranial hypertension” literally means that cerebrospinal fluid (CSF) pressure within the skull is too high. Chronic intracranial hypertension (IH) is a serious neurological disorder that can cause severe headaches, vision loss, blindness and life-altering disability.
Anyone can develop chronic IH at anytime in life. There currently is no cure.
Old names for IH include pseudotumour cerebri and benign intracranial hypertension.
Most people have never heard of it, including many in the medical profession. If more people knew about IH, then patients might get treated with the compassion they
deserve!
IH is sometimes caused by an existing medical condition, but it often occurs without a known cause. Idiopathic IH (IH that occurs without a cause) is considered a rare illness affecting 1 in 100,000, though the rate of incidence is as high as 1 in 5000 for some
people. Millions of other people have a condition or disease such as traumatic brain injury, stroke or kidney failure, in which IH can play a role.
There has never been a drug specifically developed to treat IH. Treatment options are limited. For some people, medication can help control intracranial pressure. But for others, the only choice is painful surgery to insert a shunt to drain the excess fluid from the brain. Since shunt surgery only has a 50% success rate, this frequently means many surgeries, with the accompanying risks. If sight is at risk, a person with IH often has to undergo optic nerve surgery to save their vision.
IH symptoms include:
Severe headaches (as if your head is in a vice),
Vision loss and/or blindness,
optic nerve swelling,
Pulse – synchronous tinnitus,
Sore/ stiff neck,
Back pain,
Memory/ cognitive problems,
Fatigue,
Malaise,
Dizziness,
Light headedness,
Photophobia,
Noise sensitivity.
Chronic IH is life-altering, and robs people of their once happy and healthy existence. No two cases are the same, making it a difficult condition to manage.
For more information on IH, please go to the IHRF’s website:
http://www.ihrfoundation.org
THE IH RESEARCH FOUNDATION
The IH Research Foundation is the only non profit organization in the world devoted to supporting the medical research of chronic IH. Their mission is to discover why IH happens, along with new, effective therapies to treat the disorder. Their ultimate goal is to find a cure.
Whizz-Kidz is working with the organisations Devices for Dignity and Frazer-Nash Consultancy to help design a wheelchair of the future. That’s why we are asking young wheelchair users, parents and carers, and professionals working with disabled children to give us their views about wheelchairs.
- If you are a young wheelchair user please complete our online survey for young wheelchair users
- If you are a parent or carer of a young wheelchair user please complete the online survey for parents and carers
- If you are a professional supporting young wheelchair users please complete the online survey for professionals
If you prefer you can print off a paper version of the survey most appropriate to you and send it back to us in the post.
- Download the young wheelchair user survey
- Download the parents and carers survey
- Download the professional’s survey
You can return the completed paper version to:
Design a Wheelchair
Whizz-Kidz
Freepost Lon 10990
London SW1E 5BR
The deadline for completing the survey is 14th May 2010.
Thank you for your help with this important project.
MS Trials Offer Stem Cell Hopes
The study has been carried out at the Burden Centre in Frenchay Hospital
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Clinical trials on six multiple sclerosis (MS) patients who have had stem cell injections have produced “encouraging” results, scientists say.
The trials, which are thought to be a world first, are taking place at Frenchay Hospital in Bristol.
The six were injected with stem cells harvested from their own bone marrow. Research found this increased nerve function by up to 20%.
The team is planning a much larger trial of the technique.
MS is a nervous system disorder that affects around 40 in every 100,000 people in the UK.
It can lead to a variety of symptoms, including muscle weakness, fatigue, loss of co-ordination, visual and speech difficulties.
Long-term hopes
The Bristol study, undertaken by a team from the University of Bristol, collected and filtered hundreds of thousands of the patients’ PCT stem cells from their bone marrow while they were under general anaesthetic.
The cells, which are known to transform into other forms of cell and repair damage, are injected en masse into the patients’ bloodstream.
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My long-term hope is that stem cell research will be a cure for MS and will be available for everyone who is afflicted with this disease Liz Allison, MS sufferer
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Because the cells come from the patients’ own bodies there are no ethical issues surrounding their use.
Study leader Prof Neil Scolding stressed to the BBC that the research was still in its infancy.
“We didn’t see patients throwing away their wheelchairs, throwing away their walking sticks, the symptoms that the patients had didn’t change a great deal.
“They didn’t get a lot worse over the 12-month period – and you might have expected them to – but neither was there a great difference in what patients could actually do. So this is just a beginning.”
Liz Allison, one of the volunteers being studied, said: “My long-term hope is that stem cell research will be a cure for MS and will be available for everyone who is afflicted with this disease.
“It has the added benefit of being a relatively pain-free procedure and having no side effects.”
Prof Scolding said he was encouraged by this early study, the data from which may indicate that stem cells can stabilise MS.
“A larger study is required to assess the effectiveness of bone marrow cellular therapy in treating MS.
“We are hopeful that recruitment to this phase 2/3 study may begin towards the end of this year.”
Sainsbury’s To Sponsor 2012 Paralympics
London Olympics organisers said yesterday that Sainsbury’s multimillion pound sponsorship of the 2012 Paralympic Games would change the way the event is viewed by the public.
The supermarket yesterday became the first company to solely sponsor the Paralympics, rather than backing both events, and will sell merchandise in its stores as well as getting its staff involved with volunteering opportunities.
Sainsbury’s chief executive, Justin King, said the company had chosen to focus on the Paralympics because it offered a unique opportunity. Unlike the Olympics, sponsors are allowed to have a presence in the stadium and other venues during the Paralympics and Sainsbury’s will also be featured on athletes’ bibs and during the torch relay.
Sir Philip Craven, president of the International Paralympic Committee, said the deal was historic. “What excites me most is that this will get out to the UK through the 850 stores. It will really get out to Britain the importance and the brilliance of London’s Paralympic Games in 2012,” he said.
Sainsbury’s plans to link its 850 stores with individual Paralympic athletes from different parts of the country and will twin groups of stores with specific Paralympic sports. Staff will be offered the opportunity to volunteer at the Games, which begin on 29 August, and take part in the torch relay.
Lord Coe, chairman of the London organising committee (Locog), said: “We said in Singapore that through the Paralympic Games we wanted to change public attitudes towards disability, celebrate the excellence of Paralympic sport and to enshrine from the very outset that the two Games are an integrated whole.
“We are very excited by this announcement, which will drive the power and strength of the Games. We have an extraordinary opportunity to drive all the values the Paralympic Games engender.”
Sainsbury’s will join seven other domestic “tier one” sponsors that have paid more than £40m each to sponsor the Olympics and Paralympics in 2012. Locog has now raised more than £600m from 29 partners towards the £2bn cost of staging the Games. In addition to domestic sponsors, Locog’s income comes from the International Olympic Committee’s roster of sponsors and ticket sales.
By focusing exclusively on the Paralympics, the supermarket chain will hope to become linked with the event in the public mind. Because it is being broadcast by Channel 4, rather than the BBC, there will also be greater opportunities for advertising around it.
King said he was confident that the deal could take the Paralympic movement to a new level” and would build on existing programmes such as its sponsorship of schools athletics and its Active Kids programme.
This means real progress for the Paralympics as an event, and hopefully for disability sport in general as well. It’s really good, exciting news. My thanks to Sainsbury’s!
This was published on Monday, and I was hoping that it would get more attention, but sadly it didn’t. So, on the eve of the election, here it is. Are the results true, readers?
The most important issue for disabled people when deciding how to vote is public services, according to the findings of a new ComRes / Scope poll published today.
There is considerable frustration among disabled people with all political parties; with 88% of those surveyed saying they felt that their views and opinions are not generally heard by politicians.
In the first ever poll of a new panel of disabled people, the most important issues were the benefits system and the NHS, with nearly four in ten disabled people selecting each of these issues (39%), followed by social care (35%).
In a stern warning to the political parties, more than two thirds of disabled people say the policies of political parties on disability issues would influence who they vote for.
The ComRes survey marks the first dedicated panel of disabled people by a leading pollster. It is part of wider plans by Scope and ComRes to establish a new panel of disabled people who will be regularly consulted on public (policy) issues – in recognition of their growing influence as a key constituency.
Richard Hawkes, Scope’s Chief Executive, said:
“This survey shows that when it comes to election time disabled people have very different priorities to the rest of the electorate. As disabled people are more reliant on public services than the rest of the population, it is hardly surprising that benefits, health and social care services are key issues for them.
“We know there are deep concerns among disabled people that the services they rely on most will be seen as easy targets for cuts. This is a timely reminder to all politicians about just how important these support services are to disabled people.”
Andrew Hawkins, Chairman of ComRes, said:
“This ground-breaking poll reveals that disabled people are at least as likely to want to exercise their right to vote as the public as a whole. But it is shocking to find that a significant number of disabled people face real barriers when trying to vote. It’s also clear that this group of voters should not be overlooked: their voting choices are heavily influenced by a party’s policies on disability and they feel they are being ignored by politicians.”
“This survey is a real first in polling terms. With an estimated 10million disabled people in the UK they are a key constituency that politicians cannot afford to ignore, yet their views are rarely taken into account. Our new panel of disabled people will mean that in future their voices are much louder in the wider debate on key public policy issues.”
Scope is running a campaign in the run-up to the general election – called Polls Apart – aimed at improving disabled people’s access to voting.
Listen To The Silence
Newsflash, dear readers!
Hot off the computer keyboard comes Listen To The Silence, a collection of original poetry written by me. I have literally just turned these poems into an ebook, which is exclusively available to download from here for £2.
I hope you enjoy reading the poems as much as I enjoyed writing them!
Disabled People Wait Years For Equipment
Charities said elderly and disabled people were being “held prisoner” by local authority delays in providing mobility aids, such as ramps and handrails, with some restricted to just one room.
The Conservatives said the disclosures exposed Labour’s “shameful neglect” of Britain’s most vulnerable people, and made a mockery of Government pledges to ensure the elderly were given support to stay in their own homes.
A Sunday Telegraph investigation has revealed:
- One third of local authorities have left infirm and disabled people waiting for more than three years for disability adaptations to their homes;
- Staffordshire County Council admitted to a delay of eight years, while nine more authorities disclosed that their longest delays were five years and more;
- Many elderly people waited so long for help that they were moved into care homes before help was provided. While most councils refused to supply this data, those that did admitted to 97 such cases in 2008/9, equating to more than 300 cases a year across the country.
Each year around 40,000 people – mostly elderly – are awarded a “disabled facilities grant” for adaptations to the home, such as handrails, ramps and stairlifts.
The equipment allows frail elderly people to maintain their mobility, preventing or limiting a deterioration in their condition.
Freedom of Information responses from local authorities show widespread delays in providing aids to those who seek help.
Of 117 councils which supplied information, 47 admitted longest waits of two years or more.
The average lag between an assessment of a request for help, and an adaptation taking place, was 15 months.
There were hold-ups of more than six years in the London borough of Barnet, and at least five years in Oldham, Coventry, Wolverhampton, East Sussex, Cheshire, Warwickshire and Salford.
Carole Cochrane, Chief Executive of The Princess Royal Trust for Carers, said the failings meant elderly and infirm people were being left trapped for years, often unable to move around even within their homes.
She said: “We see many elderly people finding themselves, effectively, a prisoner in parts of their homes as they wait for basic equipment. It is unacceptable that people have to wait so long for adaptations to their homes.”
Shadow health secretary Andrew Lansley accused Gordon Brown, the Prime Minister, of “failing to deliver any meaningful reforms to Britain’s creaking social care system,” despite repeated Government promises to provide the elderly with more support in their own homes.
Mr Lansley said: “One of the most shameful legacies of this Labour Government will be its neglect of our elderly people. It is unforgivable that frail people are being left without the help they need to make their homes safe for years at a time.”
Charities said the delays meant many infirm elderly people deteriorated further, losing muscle strength as their movements became more restricted.
Many struggled to cope with a loss of privacy, as well as independence, which could have been maintained if they had been given support, such as walk-in baths, or bathroom safety rails.
Imelda Redmond, Chief Executive of Carers UK said: “This is stripping people of basic dignity as well as their quality of life.
“We hear cases of adult men taking their mothers out of the bath; of someone with 12 months to live waiting six months for a basic adaptation which would allow them some quality of life.”
She described how a couple sank into depression as a wheelchair-bound man was confined to his home for eight months. His wife was forced to give up work to care for him, so they could not afford to have the adaptation done privately.
Mrs Redmond said: “We should be easing the lives of these people who have a difficult enough time as it is. In the parts of the country where it is bad it is an absolute disgrace.”
Of England’s 152 authorities, 117 responded to a Freedom of Information request about their average and longest waits for adaptations in 2008/2009. Of those, 84 provided figures about their longest delays.
They included 47 who admitted to longest waits of two years and more, including 28 with waits of at least 3 years, and 15 with hold-ups of 4 years and more.
Matthew Ellis, Staffordshire County Council’s cabinet member for adults and wellbeing, said the investigation “shone a welcome spotlight on an inadequate system which leads to unnecessary delays, seriously impacting on the lives of vulnerable adults.”
He said the council had halved waiting times for adaptations since 2007, with average waiting times of 18 months in 2008/2009.
However, he said there would not be serious improvements until a “fundamentally flawed” system of care was overhauled.
Councils provide home adaptations through a Disabled Facilities Grant, which is means-tested.
The Government provides central funding – last year of £157 million, topped up by local authorities. Many said their budgets were not keeping pace with the rising number of elderly people.
Cllr David Rogers, from the Local Government Association said many councils were struggling to meet rising demands.
He said: “The recent economic downturn means some councils are faced with ever harder decisions on the use of valuable public funds, together with increased demand and rising expectations”.
After Edna Dwiar, now 92, suffered a stroke in 2002, she had to use a wheelchair for any trips outside the home.
At first, Mrs Dwiar, who is now 92, could manage without it within her house. But when she wanted to take trips outside, her twin daughters would help her to negotiate the steep steps at the front door.
By 2006, Mrs Dwiar’s condition had deteriorated, and the family asked Brighton and Hove council if adaptations could be made, to allow the wheelchair to cross the threshold.
The council said a ramp was impossible. After three years of negotiations, it agreed to install an evacuation chair, which was put in place last year, but did not fit.
Edna’s daughter Elizabeth, 62 said: “It was incredibly frustrating. Mum loved to go out, not all the time, but just to be able to go to the local fete, the Women’s Institute, or to church every now and again, and doing so became almost impossible.”
A second stroke in 2008 had left her mother with problems swallowing, meaning she could not be left unsupervised, so any trip out of the house required major planning.
“If she couldn’t go out, quite often it meant I couldn’t go out, unless my sister was there, or vice versa. We were all missing out on life,” her daughter said.
By 2007, the family were desperate. One trip to a local rose garden was dubbed “The Great Escape”.
Miss Dwiar said: “We just got so fed up, we decided that whatever it took, we would get mum out of the house for the day. It took me, my sister Pauline and an elderly aunt and a cousin to get her over the steps, and it took us half an hour, but we just felt we had to keep trying.”
Last June, in desperation, the family asked a local handyman for advice. Within a couple of days, he had altered the design of the steps, allowing the wheelchair to cross the threshold, at a cost of just £200.
Miss Dwiar said: “It has made an extraordinary difference to all of us. It is only a few steps, but it has given us all our lives back.”
LONGEST DELAYS FOR HOME ADAPTATIONS FOR DISABILITY
Figures, provided by local authority, describe the longest waiting time between assessment for a home adaptation, and changes being made.
5 YEARS AND MORE
Staffordshire
Barnet
Oldham
Coventry
Wolverhampton
East Sussex
Parts of Cheshire East (former Macclesfield, Crewe and Nantwich borough council areas)
Warwickshire
Salford
4 YEARS AND MORE
Derby
Bromley
Brent
Lambeth
Harrow
3 YEARS AND MORE
Sutton
Blackburn with Darwen
Stoke-on-Trent
Sheffield
Trafford
Calderdale
Kirklees
Southwark
Portsmouth
Sandwell
Herefordshire
Stockport
South Gloucestershire
2 YEARS AND MORE
Devon
Hertfordshire
Barking & Dagenham
Kensington & Chelsea
Isle of Wight
Croydon
North Somerset
Wiltshire
Liverpool
Bolton
Milton Keynes
York
Part of Dorset (Christchurch borough council)
St Helens
Kingston-upon-Hull
Part of Cheshire East (former Congleton borough council area)
Leeds
North Tyneside
Redbridge
ONE YEAR AND MORE
Torbay
Parts of Dorset (West and East Dorset district council areas)
Merton
Wandsworth
Sunderland
Tower Hamlets
Windsor & Maidenhead
South Tyneside
Bournemouth
Stockton-on-Tees
Darlington
Nottinghamshire
Middlesbrough
Islington
Solihull
Poole
Rutland
Bath & North East Somerset
Barnsley
Bedford
Newham
Walsall
Greenwich
Wakefield
ONE YEAR OR LESS
Haringey
Parts of Dorset (North Dorset and Purbeck district council areas)
North Lincolnshire
Slough
City of London
Gateshead
Havering
Worcestershire
Westminster
Hammersmith & Fulham
Doncaster
What Do You Call Your Wheelchair?
When I was about 10, I used to spend about half an hour of each weekday at mainstream primary school strapped into a standing frame, usually reading a book. My Learning Support teacher at the time probably realised that this was not the most comfortable experience in the world for me- especially when I wanted to be sitting at a desk just like everyone else! So, in a well-meaning effort to encourage me to do what we had been told had to be done, she ‘named’ my standing frame Penelope. In case you’re wondering, it didn’t help.
I was reminded of this long-forgotten memory earlier today when, while reading My Left Foot, I discovered that Christy Brown and his brothers ‘named’ his first wheelchair (more like a wagon, but it did what wheelchairs do) Henry.
So, my question to you today, readers, for a bit of fun or a walk or wheel down memory lane, is- what do/did you call your wheelchair/walker/standing frame/hearing aid? Answers in the comments, please. Stories like mine above are welcome, too.
Christine Simpson
A woman who has been in a vegetative state for five years following a stroke may be aware of what is going on around her, a new brain-scanning method has revealed.
When doctors at Addenbrooke’s Hospital in Cambridge suggested 58-year-old mother-of-two Christine Simpson might be a good candidate for a specialised MRI scan called fMRI (functional Magnetic Resonance Imaging) as part of a large study, her husband Colin had no hesitations.
Right from the beginning, he has believed that Christine is aware and able to move her eyes up and down to correspond with yes and no, although doctors treating her had told him this was not the case.
“These doctors at Cambridge seem to care what happens to people like Christine – they are believers, ” said Colin.
“These people need to be able to communicate their wishes, their understandings and their thoughts.”
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 Our family is devastated by everything we’ve been throughColin Simpson
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Patients scanned for the fMRI study are asked to imagine playing tennis – which activates one distinct part of the brain – or walking or driving around, which lights up another, completely different area.
In this way “yes” and “no” answers can be given to the doctors’ questions.
Colin said: “Christine was asked a series of questions and was able to imagine walking through her house.
“She couldn’t do the playing tennis bit, but the fact that she followed the other commands proves what we knew, she is aware of what’s going on.
“What all these patients need is stimulation because some of them do come out of this state.
“It takes time and lots of stimulation but the scan results show that it’s worth doing.
“The main problem is that it destroys families, our family is devastated by everything we’ve been through.
“One of my sons doesn’t speak to me now. When something like this happens everyone reacts differently and people want to find someone to blame.
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If you think there’s some consciousness and awareness of their environment, it becomes ‘Oh, my God, he’s trapped inside a nightmare’ Dr Richard Burton, Mt Zion Hospital, San Francisco
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“People think my life should be looking after Christine, which I’ve done for five years. But to be honest with you, I’m not sure what we should do. We don’t get enough help.”
Christine Simpson’s scan was carried out by Dr Adrian Owen from the Medical Research Council in Cambridge.
His team, together with researchers in Belgium, scanned 54 patients who had been comatose with severe brain injuries.
Five of the patients, including Christine, were able to modulate their brain activities in a way that was perceptible to the scanners and interpreted as a response by the examiners.
“Getting patients like Christine to use parts of their brain to answer yes and no does shows an ability to follow commands,” Dr Owen said.
“It shows us that brain-imaging can provide something in addition to clinical or bedside evaluation.
“In this case it told us that a patient that looked vegetative clinically was in fact entirely aware.
“It’s important to stress that this will be a minority of patients, it doesn’t mean that all vegetative patients are aware but it does mean that we are now able to detect those that are.”
Medical scepticism
Not all doctors are convinced by the study’s results so far.
Dr Richard Burton from the neurology department at Mt Zion Hospital in San Francisco questioned the nature of consciousness achieved by patients like Christine.
He urged against reading too much in to the findings as he said there was still so much that remains unknown about what thought processes, if any, are actually taking place.
“When you look at the fMRI scans like this you can say what areas are active but you don’t know how this corresponds to the behaviour without talking to them.
“For loved ones, I don’t know what I’d want to hear.
“If you had someone who you thought was completely unconscious, you could say ‘at least they are out of their misery’.
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 Both I and the psychologists… have asked Christine whether she would prefer to die and she has indicated, with her eyes, that she wouldColin Simpson
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“But if you think there’s some consciousness and awareness of their environment, it becomes ‘Oh, my God, he’s trapped inside a nightmare’.
“This is the worst possible scenario as each family member has different thoughts on what should happen.”
Christine is now looked after at a centre in Hertfordshire. Colin visits every day and takes her home at weekends.
But she needs round-the-clock care and, with no signs of any progress in her condition, Colin wonders where the latest findings actually take them.
“There’s a huge debate about what to do with these patients,” he said.
“I don’t know if I should say this but today, after five years, I actually think it probably would have been better if Christine had died, because we don’t get any help. We’re not moving forward.
“The problem is the way that’s done. In some cases they withdraw food and water but that is such a cruel thing to do. To let them starve to death, it is cruel.
“Both I and the psychologists that come here have asked Christine whether she would prefer to die and she has indicated, with her eyes, that she would.
“It’s a dilemma. You could ask, is she actually in her right mind to make that kind of decision?
“The decision would have to be made for her, but who can make the decision?”
PVS – The Search For Consciousness will be broadcast on Tuesday 4 May at 2000 BST on BBC Radio 4 and will be available for seven days after that on the BBC iPlayer.
Bank Holiday Monday Fun
An old, blind cowboy wanders into an all-girl biker bar by mistake. He finds his way to a bar stool and orders some coffee.
After sitting there for a while, he yells to the waiter, ‘Hey, you wanna hear a blonde joke?’ The bar immediately falls absolutely silent.
In a very deep, husky voice, the woman next to him says, ‘Before you tell that joke, Cowboy, I think it is only fair, given that you are blind, that you should know five things:
- The bartender is a blonde girl with a baseball bat.
- The bouncer is a blonde girl.
- I’m a 6-foot tall, 175-pound blonde woman with a black belt in karate.
- The woman sitting next to me is blonde and a professional weight-lifter.
- The lady to your right is blonde and a professional wrestler.
Now, think about it seriously, Mister. Do you still wanna tell that joke?’
The blind cowboy thinks for a second, shakes his head, and mutters,
‘No…not if I’m gonna have to explain it five times’
A Letter To A Newborn DisAbled Baby
This is Dave Hingsburger’s contribution to Blogging Against Disablism Day yesterday.
It’s a letter that he was asked to write by one of his regular readers. She had just given birth to a baby with a DisAbility and she wanted Dave to write her son a ‘welcome to the world.’ I’m linking it here because I think it is absolutely beautiful and a must read for anyone with any connection to disability.
If you would add anything to it, or if you would write anything different, given the chance, do share your thoughts with us in the comments below. But most importantly, please enjoy this great piece of writing.
Cuts to funding for disabled railway access have come under fire from the Scottish government.
The transport minister has written to the UK Department of Transport calling for a rethink over its move to halve funding to the “Access for All” scheme.
The scheme increases the number of railway stations that are step-free and wheelchair accessible.
The DfT said annual funding for the scheme in Scotland was being cut from £796,000 to £390,000 for 2010-2011.
The department intended to allocate £7.9m to the fund across Britain this year, in line with previous years.
‘Great value’
Last October, the initial indication was that Scotland would receive £796,000, as part of its agreed 10% of the budget.
But funding has now been cut across Britain to £3.9m, with the amount available for schemes in Scotland reduced to £390,000 – a 51% cut.
Scotland’s Transport Minister Stewart Stevenson has called for the cut to be suspended, so the issue can be “revisited” after the general election on 6 May.
In a letter to the UK Parliamentary Under Secretary of State for Transport, he voiced “disappointment” at the reduction.
“The work undertaken through the fund is of great value, in particular to some of the most vulnerable in our communities, and it is they who will be most affected by this decision,” he wrote.
“I would urge you to reconsider your position on this.”
The Farmer’s Cheese- A Musical For Deaf Children
I’ve just received this press release from George:
Following its highly successful premiere in Glasgow, the musical, “The Farmer’s Cheese”, will be performed live in London for the first time on 8th May 2010. This unique piece of musical theatre was specifically written for children with cochlear implants.
This not-for-profit event takes place at 3.30 pm on 8th May 2010 at the Drill Hall, London and is kindly hosted by the Royal National Throat Nose & Ear (RNTNE) Hospital and MED-EL UK for the benefit of families whose children have cochlear implants.
Originally a children’s book, “The Farmer’s Cheese” has been adapted for theatre by 33 year old Scottish composer and the MED-EL Music Fellow, Dr. Oliver Searle, whose works have been performed at music festivals throughout the UK and Europe.
An expert in this field, Searle takes full account of current scientific research when composing for cochlear implantees. “My challenge this time,” Searle states, “is to get the storyline across while still holding the children’s attention span.”
Searle has chosen musical instruments which scientific studies suggest are easiest for cochlear implant (CI) users to understand and enjoy. The orchestral arrangement is clear and simple making the music much more accessible to an audience of CI users.
Author of “The Farmer’s Cheese”, Geoff Plant of MED-EL, who is a distinguished Hearing Rehabilitation expert explains, “Music is a very important part of childhood, and we want to ensure that children with cochlear implants have access to this vital part of our auditory culture”.
The Farmer’s Cheese is performed on stage by Martin O’Connor, Clare McGarry and the music is supplied by the ensemble, Symposia, whose antics on stage contribute greatly to what is a delightful and highly entertaining flight of fantasy where mouse outwits man.
The performance is on 8th May 2010 at 3.30 pm at the Drill Hall, 16 Chenies Street, London, WC1E 7EX. Tickets are free of charge on application to MED-EL UK. Telephone 01226 242 879 or email charles@medel.co.uk.
BBC Three’s Autistic Season- A Review Of The Autistic Me: One Year On And Autistic Driving School
This is a guest post by Phil Evans. Phil blogs at My Autistic Life, where this was originally posted yesterday. Thanks to Phil.
Last year BBC Three showed a documentary called The Autistic Me which told the story of three young adults and how they cope with having Autism, something that nobody has really attempted to show before on British Television.
What they showed received critical acclaim and bought great success not just through ratings but for Autistic people, this coming about because a degree of clarity finally began to come through that everybody isn’t the same who has any sort of Spectrum syndrome.
As the initial broadcast featuring now 16 year-old Tom, Oliver (20) and Alex (25) proved so popular, a follow up was aired just over a week ago to show changes in their lives 12 months later which is what I’ll partly write about today.
Keeping with the channel’s season which focuses on how people with Autism function in ‘normal’ situations, a variety of programmes have been commissioned showing various ways of life that will come together to make viewers aware that people with disabilities are capable of doing anything they wish.
Autistic Driving School was number two of these special productions to gain awareness which got shown last night and will therefore get personal opinion soon, though I’ll begin this critique by going back to the Autistic Me – One Year On.
The Autistic Me – One Year On
After getting an initial insight into the lives of three incredibly different Autistic members of society, it was very interesting seeing how life is treating them after what had proved to be a year of great change for everybody involved.
Something else which surprised me personally was even though I’ve not shared everything that each of the three case studies involved had been through, there were certain traits of their behaviour I feel in daily life or have experienced over past years that proves a great stigma brought on by those trying to understand the condition that everybody is equal and has similar characteristics.
These general thoughts couldn’t be more wrong, everybody is different by nature and therefore don’t have many similarities at all.
Take Tom for example, a youngster who has gone through school with many social issues but is now finding his feet in life and becoming much more confident at college as he grows into an adult.
Beforehand there didn’t seem to be too much happiness as communication problems held any possible improvements back, though changes like leaving home for a period of time and going into different educational environments really seemed to bring him out of his shell.
Now in a band whilst making friends which is getting him towards gaining qualifications, there have been complete changes behaviour wise that will only reap benefits later which strangely made me proud as his fantastic progress was documented for all to see.
I smiled at this because I’d been through similar times and felt these differences too, college is nothing like school in terms of structure and therefore has power that can potentially change anybody’s opinion of the education system.
Such developments are helping a quiet teenager to blossom and leave behind insecurity, surely this would be enough to make anybody feel slightly warm inside like I did after watching?
Oliver on the other hand hasn’t had things go quite so positively in recent months.
In 2009 he was shown working at the British Library and really enjoying doing something that meant a lot to him, though sadly there have been complications which has resulted in unemployment and periods of depression regarding the current jobless situation with no real prospects coming up soon.
Once again I can relate and understand why there are signs of sadness, this is because I’ve felt exactly the same way but following a brighter few years for myself hopefully there will be happier developments soon enough.
Finally, what has happened to Alex?
Relationships are on his mind as he has a steady paid job which is something that I’m glad to report is going very well as romance continues to grow with Kirsty, a girl who the 25 year-old met online through an internet chat room who also has Autism.
First encounters between the couple seemed very tense and unnerving to witness on screen as they both seemed wary of each other but there is good news, 12 months later a relationship has developed which would give the impression that two soul-mates may have found one another in what could be described as an unorthodox way.
I’ve again got reason to understand this because there were times that I’d be on such websites constantly and then meet users away from the computer, though doing such a thing wouldn’t happen again these days.
To sum up the documentary, I found what was shown very interesting and loved finding out how everybody had grown in themselves.
A week later, what would Autistic Driving School show?
Autistic Driving School
Compared with the previous programme, this latest offering was completely different in terms of what it shown and portrayed to viewers.
Instead of showing how change can affect certain stages of development, we were invited into lives of people with Autism as they learnt how to drive and combat problems that may occur such as confidence behind the wheel and gaining relevant qualifications needed to obtain a licence.
Personally there are a couple of case studies that really stood out from the documentary for me, it is these that I’ll speak about as many of the issues bought up mirrored themselves in every situation.
The reason why these isolated examples imprinted most on my memory is because they tell a story of both instructor and learner, always something which can produce special relationships but perhaps even more so when two Autistic people who received very late diagnosis meet and engage in this way.
Teaching was 43 year-old Julia Malkin, somebody who has become one of the most decorated driving instructors in the United Kingdom after battling against bullying due to her Asperger Syndrome which saw her leave school without any qualifications.
Despite these early setbacks, it was only in May 2008 that AS diagnosis was finally confirmed after years lifetime of indecision with her decision to take up instructing getting made shortly before when she witnessed an accident on the roads.
Julia came across as being very passionate about what her job and after doing further research for the sake of this post, it’s all too easy to truly admire obstacles that have been pushed whilst achieving something truly brilliant not just for personal achievement but also learners who pay for skills that she offers.
By watching Autistic Driving School, ways of communication and teaching shown themselves have made me realise that a lot of hard work has been done in the past that is now proving fruitful with great results. This is definitely something to be proud of, yet another offer of hope that any goal can be reached no matter what holds it back.
On screen we are told of how she is attempting to help a female driver from Birmingham gain confidence to go on the open road after passing her test years before.
Severe doubt and worry shown itself as Autism had manifested itself in such a way that even holding a conversation was an issue through being shy, this meaning that part of the initial battle to gain friendship was getting speech to flow freely before getting into any car.
Eventually it became clear that trust had been gained as lessons commenced, proving that with a little hard work anything can be achieved which may not only impact somebody personally but also improve lives of others too.
Surely this can only bring good to the world, what it also did was leave me with only happy thoughts as end credits rolled that even though there can be so much bad in life there is also room for positivity.
The Concept Of Normality
Today is Blogging Against Disablism Day 2010, and this is my contribution to the event.
The Concept Of Normality
The kids who are different
Have something to say to
Every member of what we like to call the ‘mainstream’ world
Can you look past our wheelchairs?
Our walkers, our white sticks?
Not at them, but please look at us
Can you do that for us?
Everywhere we go,
People only see what they want to see
That is, the wheelchairs, the walkers, the white sticks, not us.
Our dream is to be accepted by the world
For more than just that
Not as wheelchair users, guide dog owners
Or ‘the one with the walking frame’
Remember, if you will take the time, that we are people too
Maybe, just maybe, we have hearts
And maybe, just maybe, they will be broken by your cruel words
Let me know if you meet normality walking down the street
It doesn’t exist in our minds
Though we know that, being members of the mainstream,
You might not agree
Down’s Syndrome Documentary Wins Award
A documentary about a couple with Down’s syndrome and a drama about a woman escaping her oppressive life have been honoured at the Tribeca festival.
Monica & David, which follows a US couple’s preparation for marriage, won the festival’s documentary prize.
A Tale For DisAbled Voters
There’s some interesting information about voting with a DisAbility in this very well written article by Peter Beresford at the Guardian’s Comment is Free.
A Special Mother’s Message To Cameron
This is a guest post by Sarah Milne. It was originally posted yesterday at Left Foot Forward. Thanks to Sarah and the editors of Left Foot Forward.
On Tuesday, a film was released to highlight the potential consequences widowed and single parent families would face as a result of the Conservative Party’s marriage tax break. It was released by the Don’t Judge My Family campaign and supported by a letter from 70 widows and widowers, published in The Telegraph. As reported by Left Foot Forward, the letter expressed anger at the idea of families facing financial penalties when they are at their most vulnerable.
| David Cameron has said the financial incentive of the tax break is less important than his desire to give the message that marriage is central in his aim to create a ‘we’ rather than ‘me’ society. It is this ‘message’ that worries me the most.I am a single mum to three happy and balanced children who are described as ‘inspirational’ by nearly everyone who meets them. If you are wondering if it’s possible for children bought up by a single mum to be referred to in that way then take a look at the film. |
That’s my family, the one having fun together and collapsing into spontaneous laughter at the end.
My youngest son, William, has complex medical needs, mild cerebral palsy and Asperger’s Syndrome. He had an organ transplant at the end of 2008 and, shortly afterwards, my partner told me that the stress we’d been through had taken its toll and damaged our relationship beyond repair. Neither of us did anything wrong, we had just been tested too far.
A follower told me on twitter that she doesn’t think the Conservative ideas necessarily prejudice against families like mine. I disagree. Once a government sends out strong messages concerning whom it values and whom it doesn’t it will be picked up in the media and become absorbed into the public consiousness. David Cameron says this policy is about creating a ‘we’ society.
As Harriet Harman has suggested, that ‘we’ will be “smug married couples…wagging their fingers” at people like me. Oh, and believe me, it happens. My girls have been told that they are poor because they are in a single parent family. A vicar once told me that I really should be married .
After asking me where his Dad was, I was once told by a stranger that my son’s behaviour in a supermarket (a result of his Asperger’s Syndrome and a situation I had completely under control) hardly surprising if I’m trying to bring him up on my own. How much worse will this be for families like mine under a government preaching marriage as the route to acceptance?
A comment has been left on You Tube saying the families shown in the campaign film demonstrate that “Embracing change is positive and empowering for us as individuals and as a society generally”. I really don’t understand why the Conservative Party don’t agree. They seem to want to take us back to the days when only one kind of family was acceptable and it worries me.
ME Specialist Banned From Prescribing Drugs
Dr Myhill has a specialist private practice in Powys
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A doctor has been banned from prescribing drugs and told to take down part of her website after appearing before the General Medical Council.
Dr Sarah Myhill will have to comply with the order for 18 months after two complaints were made against her.
She has a private practice near Knighton, Powys, where she specialises in treating chronic fatigue syndrome.
Her supporters were outside the hearing in London and claimed she was the victim of a witch-hunt.
Dr Myhill appeared before the General Medical Council (GMC) for the seventh time, and said before the hearing that she could not understand why complaints against her were being heard.
But the chair of the GMC panel said there serious concerns about the potential risk to patients and her fitness to practice would continued to be reviewed.
One of the complaints was on the content of Dr Myhill’s website, which warned patients against oral contraceptives, the MMR triple vaccine as well as mammogram tests and biopsies for cancer.
But Dr Myhill says she tries to find the causes of a disease, rather than treating the symptoms with drugs.
The GMC considered whether there might be “impairment of Dr Myhill’s fitness to practise which poses a real risk to members of the public or may adversely affect the public interests or Dr Myhill’s own interests”.
Dolphin Boy
Last year, Same Difference featured the story of Lucas Murray, 7, from Dorset, who was born blind but can now ‘see’ after being taught a technique known as ‘echo location’ by blind Californian Daniel Kish, founder of a charity called World Access For The Blind.
Today, the Daily Mail website carries the story of Jamie Aspland, 4, from Kent, Kish’s latest UK patient. The article describes Jamie as ‘dolphin boy’ because echo location is used as a language by dolphins.
Jamie’s story is a great example of DisAbility which may be particularly interesting and useful to readers in the UK who are interested in treatments for blindness.
Contributors Wanted For Disability Hate Crime Film
Thanks to Emma at the BBC Ouch Blog for this information.
October Films has been commissioned by BBC1 to make a film about DISABILITY HATE CRIME. They are looking for people who are currently experiencing ongoing harassment or abuse because of their disability. If you are experiencing this – or know of somebody who is – then contact hugo.ward@octoberfilms.co.uk or call 0207 284 6868 to get involved.
What a shame it is that things like this are still happening! Hasn’t Eastern Airways heard of the Disability Discrimination Act? Or worse- don’t they care that they so obviously broke it last week?
A wheelchair athlete heading for a race is angry he was stopped from boarding a flight on safety grounds.
Richie Powell, from Carmarthenshire, said Eastern Airways stopped him flying from Bristol to Aberdeen last Friday.
The airline said his booking had indicated he was able to climb the aircraft steps unaided and Mr Powell was refused boarding on safety grounds.
He eventually flew with Easyjet to Edinburgh and transport was arranged to the event.
Mr Powell said he had never had a problem with flying before despite travelling all over the world for competitions.
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Wheelchair assistance is available to and from all our aircraft, as long as passengers are able to walk up the aircraft steps and onto the aircraft without assistance Eastern Airways
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He said: “They knew full well I couldn’t walk up the stairs because I’d phoned them to check the flights twice and checked details because of the volcanic ash problems.”
Mr Powell had flown with Eastern Airways to the competition for the last two years without experiencing any problems.
‘In faith’
He said: “The first year I went to the race I went up on my own. It was definitely the same aircraft.”
Despite his disability Richard Powell told the aircraft crew he was able to climb up the steps himself but was still refused boarding.
He said: “It’s basically discrimination. You can’t come on unless you can walk.”
Aberdeenshire council, who had been organising the trip, then managed to book Mr Powell another flight with Easyjet, allowing him to attend the 10 km race at Balmoral on time.
A spokeswoman from Aberdeenshire Council said: “The travel team had booked the flights in faith and had previously used the same airline and booking process for the same event in 2009.”
A statement from Eastern Airways said: “The booking that was made on behalf of Mr Powell highlighted that he needed wheelchair assistance, but was able to climb the aircraft steps unaided.
“Unfortunately, that wasn’t the case and Mr Powell was refused boarding on safety grounds.
“Wheelchair assistance is available to and from all our aircraft, as long as passengers are able to walk up the aircraft steps and onto the aircraft without assistance.”
Although I use a wheelchair when I’m flying, I’m lucky because I can walk up a few steps and a short distance, given something to hold. But to refuse any DisAbled person any assistance at all on a plane is complete madness!
Wheelchair users, or parents of wheelchair users, I would love to know your experiences of flying as/with a wheelchair user. Have you ever experienced anything similar? I hope not! Do let us know in the comments below.
Private ME Specialist Faces GMC Hearing
A doctor due to go before the General Medical Council for the seventh time later says she cannot understand why complaints against her are being heard.
Dr Sarah Myhill has a private practice near Knighton, Powys, where she specialises in treating patients with chronic fatigue syndrome.
She says she tries to find the causes of a disease, rather than treating the symptoms with drugs.
A GMC panel will consider whether her methods pose a risk to the public.
A statement on the GMC panel listings says they will consider information received regarding the advice and recommendations issued by Dr Myhill.
They will consider whether there may be “impairment of Dr Myhill’s fitness to practise which poses a real risk to members of the public or may adversely affect the public interests or Dr Myhill’s own interests”.
Supporters of the doctor plan to hold a demonstration outside the hearing in London, saying she is the victim of a “witch-hunt”.
They say no patient has ever complained about her.
Dr Myhill runs a website which gives information on allergies and hormones, and advocates what she calls a “stone age diet” for people suffering from myalgic encephalomyelitis (ME) and other complaints including chemical sensitivity.
She treats people from across the UK.
However it is the website which has prompted the latest complaints against Dr Myhill.
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 I think there’s a small group of doctors who perceive me as a threat to their professional integrity in some wayDr Sarah Myhill
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She said in a statement on her website that a group of doctors have complained about her recommending a B12 vitamin injection to a patient.
A second complainant said the information on her website was “very worrying” and was concerned “patients are being seriously misled”.
Dr Myhill has already faced six GMC hearings since 2001 following allegations from other doctors.
She told BBC Wales: “I think there’s a small group of doctors who perceive me as a threat to their professional integrity in some way and that is certainly not my desire to in any way threaten them.
“My motive is purely to help the patient to get well in as safe a way as is possible.”
Patricia Chell has been travelling back and forth from Shropshire for three years to receive treatment, and says her health has improved dramatically since being prescribed magnesium by Dr Myhill.
“I think it’s dreadful, and in fact if she’s suspended, my life’s at stake – literally.
“Without this magnesium, I should eventually get heart failure again.”
Jonathan Bartley On Radio 2 Today
Jonathan Bartley was on Radio 2 earlier today, discussing his son, Samuel, inclusion and his confrontation with David Cameron yesterday with Jeremy Vine. You can listen to the discussion by clicking the link below from today until next Wednesday, 5 May. The discussion starts at about 134.00 and lasts for the rest of the programme.
This post is part of the Inclusion Rules! debate at Same Difference.
Special Mother Nicky Clark’s First CIF Article
Today, special mother Nicky Clark of Don’t Play Me, Pay Me campaign fame has joined the list of contributors to my favourite online newspaper- the Guardian’s Comment is Free.
In her first article for CIF, she talks about when disability humour isn’t funny. She mentions two cases that have recently featured at Same Difference– Sharon Smith’s visit to Frankie Boyle’s show and her own complaint to OfCom about the disablist language used by Vinnie Jones and Davina McCall on an episode of this year’s Celebrity Big Brother.
I’d like to take this chance to congratulate Nicky on her first CIF contribution, and to wish her many more in the future.
Woman Whose Face Was Shot Off To Get New Magnetic Prosthetic
This is an amazing story of true DisAbility. It is also a reminder to everyone of the dangers of guns. This post is part of the debate on DisAbility And Parenting at Same Difference.
An American woman is set to have a total mid-face reconstruction after losing her eyes and nose in a horrific shooting accident.
Chrissy Steltz, 27, was just 16 when her friend accidentally blasted a shotgun in her face at point blank range.
Eleven years later, doctors are set to reconstruct her face with a silicone mask with a nose and glass eyes, magnetically attached to dental implants drilled into her remaining bones.
The never-before-attempted surgery will, she hopes, allow her to raise her young son without wearing a mask.
Because she has no eye sockets or sinus cavity, doctors are unable to perform a face transplant.
Instead they are to mask her injuries with artificial eyes and a nose of silicone.
The mask will be held in place by magnets attached to eight implants embedded in the remaining bones of her face.
The $20,000 (£13,000) three-hour surgery is not covered by health insurance as it is considered cosmetic – so doctors have donated their time and skill.
And if all goes well, by this summer, Chrissy will once again have a face.
Chrissy made incredible strides towards living a normal life after the horrific accident when she was just a high school student in Portland, Oregon.
She learned to read Braille and walk with a cane.
Attending a school for the blind she fell in love with another student, Gregory Dilgers. The pair have since had a son, also named Geoffrey. He is eight months old.
When Chrissy goes to sleep at night, she told ABC’s 20/20, she dreams she can see little Geoffrey before her.
‘I see his chubby cheeks and his gorgeous eyes and his perfect little lips,’ she said.
‘When I go to bed every night … my dreams are fully sighted. I still see the sky. I still see … you know, the ocean.
‘The oddest of dreams is I’ll pull off my sleep-shade and I’ll look just like I did when I was 16,’ she said. ‘And I’ll throw the sleep-shade on the ground and walk off.’
It was during her spring break in 1999 that the horrific accident occurred.
She recounted how she was at her Portland flat with friends one day, admitting they were doing ‘what teenagers shouldn’t do’ – drinking.
She went to get some orange juice, she said, and found a friend holding the 12-gauge shotgun.
‘My words were, “Put that down before you kill somebody,”‘ she said.
‘And he told me, “It’s not loaded.”
She was just five feet away from him at the time. ‘Yep. And from that moment is when my life changed.’
Her boyfriend at the time, Will O’Brien, rushed into the room seconds later.
He told 20/20: ‘I don’t know if you have ever seen like a wounded animal trying to get up?
‘That’s what I saw. I saw an injury that nobody survives, except somebody really strong. And she was trying to get up.’
Chrissy was rushed to hospital, where doctors saved her life – but not her face.
The blast tore away her left eye socket, her nose, and the supporting mid-facial structures. It damaged her right eye so much that she lost all vision.
Doctors were amazed she survived the blast. She was in a coma for six weeks – and when she awoke she thought she had fallen asleep during a car journey with her family.
It was O’Brien who broke the news of what happened to her.
The only one of her five senses that wasn’t affected was touch, she said. ‘I have no smell. I have no sight. I have a little taste.’
But she refused to let her injuries stop her. She went on to her high school prom and graduated with straight As.
‘I knew I could sit back and have a pity party, or I could figure out what to do and go about doing it, and that’s exactly what I did,’ she told 20/20.
At classes for the blind, she met Geoffrey Dilger. By coincidence he also lost his sight at 16, though in his case it was due to a rare illness.
Seven years into their relationship, the couple had baby Geoffrey.
‘I would like for him to be able to grow up with his mom not needing a sleep-shade,’ Chrissy said.
And if all goes well with the surgery, she may just get her wish.
BBC News – Limb-loss Newcastle soldier turns teacher
A Newcastle soldier who lost a leg in Afghanistan, has decided to quit the Army and help underprivileged youngsters instead.
Anthony Makin said he hoped his new role as a judo teacher would give him a fresh start after life as a soldier.
Vodpod videos no longer available.
Compensation For NI Woman Left Brain Damaged At Birth
A health trust has admitted liability in an action brought by the family of a Tyrone woman left brain damaged at birth in a Belfast hospital in 1985.
Substantial undisclosed damages are to be paid for 24-hour care as part of the settlement at the High Court.
The woman’s parents, who cannot be identified, had fought a 12-year legal battle to prove medical negligence.
They claimed there was an unacceptable delay in delivering the child at the RVH following an amniocentesis test.
During the procedure a needle passed through the placenta caused a feto-maternal haemorrhage, the family claimed.
As a consequence the baby’s blood pressure dropped, she was starved of oxygen and suffered moderate brain damage.
Conceded liability
It was claimed the child should have been delivered immediately by caesarian section, rather than two days later.
The hearing was scheduled to last two weeks but the Eastern Health and Social Services Board, successors to the Royal Group of Hospitals, conceded liability and causation.
The family are now to receive compensation and their full legal costs in bringing the case.
Following the resolution the woman’s mother said there was no feeling of delight at the outcome.
She said her daughter would never have her own family as a result of what happened to her.
“A lot of things have been denied her, whether you describe it as mild, moderate or severe (brain damage). The penalty has been severe,” she said.
A spokesperson for the Health and Social Care Board, which has now succeeded the Eastern Board, declined to comment on the case.
A Review Of Word Of Mouth- Disability And Language
Today’s edition of Word of Mouth on Radio 4, presented by Michael Rosen, was about disability and language. Before I go any further, I must thank him for covering this very important topic.
The studio guests were ‘wobbly’ comedian Francesca Martinez, who doesn’t like to say she has Cerebral Palsy, and ‘funny looking’ woman Victoria Wright, better known as April from C4’s Cast Offs.
Both the guests made some good points, which I’m going to list and react to here.
Francesca Martinez thinks that while words are important, they are not essential, and attitude is more important. Victoria Wright thinks words matter a lot, but she would explain a mistake to someone who meant well but used the wrong words as the intention behind words is important.
Francesca Martinez thinks that we can get hung up on the right words in this country. She says that the word ‘disability’ itself is far from perfect. She sees everyone as different, and says that is why we are all the same. (At this point I had to smile, as she sounded a lot like me talking about why I named this blog Same Difference!) She says that the only difference between her and everyone else is that her ‘list of can’ts’ is different to everyone else’s. A very good way of looking at life with a DisAbility, if you ask me.
On the media, Francesca Martinez said that it ignores disabled people most of the time. She makes a good point about disability in comedy- that comedians say things about disability that the mainstream secretly agree with but wouldn’t dare to say.
She says something else I have known and said for quite a while- that young children are honest and open to difference but teenagers at secondary school age are different and much harsher.
Another point of hers I completely agree with is that to be able to talk about disability, we have to talk about normality as well- but there is no such thing as ‘normal.’ She has never met a ‘normal’ person, and she thinks, just as I do, that ‘normal’ doesn’t exist. She adds that one word can’t sum up a person.
In the second half of the programme, Michael Rosen spoke to Professor Colin Barnes, who is partially sighted. He, too, made some good points. He said that the media has a responsibility to use words responsibly- but that most people in the media are not prepared to do this. He added that language use changes all the time.
Finally, Louise Wallis of Respond phoned the studio. She said that it would be good to come up with new words to replace old, negative labels such as ‘retard’- words that are not connected to anything. So- can you think of any?
Meanwhile, for those of you who missed the programme, or even those who just want to hear it again, it’s available on iPlayer for a week. It really is well worth sparing half an hour for.
Your comments are very welcome below, as always.
Lincolnshire Wind Farm Would Harm Autistic Twins, 8
A North Lincolnshire wind farm plan has been rejected because of the “serious effect” it would have on eight-year-old autistic twin boys living nearby. Anita and Trevor Glathorne, who have one wind farm overlooking their Burton upon Stather home, said the rotating blades affected their sons’ behaviour. The planning inspectorate dismissed the appeal for three reasons, including the impact the farm would have on the boys. Developer Grange Wind Farm was not available for comment. The farm was also rejected on the grounds of the effect it would have on the character and views of the landscape and on the amenities and health of residents. ‘Spinning objects fixation’ The developers appealed to the planning inspectorate after North Lincolnshire Council refused the Flixborough Grange wind farm last year. The farm would have overlooked the front of the Glathorne’s house so they campaigned to get the application refused because they said it would harm their sons who both have Autistic Spectrum Disorder.
A report dismissing the appeal detailed evidence from a clinical psychologist who said the boys had “a fixation with spinning objects” and the “time they spend engaged in spinning and observing objects has to be limited in order to allow them to engage in other more meaningful activities”. Mrs Glathorne told BBC News the existing Bagmoor wind farm overlooking the back of their home had had a “massive effect” on her sons. “Both boys just stand and scream and flap their arms ecstatically at them spinning and get quite cross when they don’t spin… it’s unbelievable the effect, really worse than we could have ever imagined.” She said Ross had become so obsessed with the turbines that they had been forced to move his bedroom. Mrs Glathorne added: “We just weren’t prepared to make them prisoners in their own home… why should we when they’ve got such a lot of freedom and a such a lovely place to grow up.” Planning inspector John Braithwaite said: “The effect of the Grange wind farm on the health and well being of Lewis and Ross, and on the health and well being of their parents and sister, cannot be underestimated. “It is, in fact, difficult to imagine how the family could continue to live at their home if Grange was to be built in addition to Bagmoor.” |
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Cameron Confronted By Angry Father Of DisAbled Child
Ha! I couldn’t agree more with special father Jonathan Bartley, who confronted David Cameron on the campaign trail today about his policies for the education of disabled children.
Here is a video of the incident.
And here is Jonathan Bartley’s written account of the incident, originally posted this afternoon at Ekklesia.
Channel 4’s FactCheck blogger, Cathy Newman, also checked out Cameron’s policy on special education after this incident. She reports her findings here.
This post is part of the Inclusion Rules! Debate at Same Difference.
This is part of the Debate on DisAbility and Parenting at Same Difference.
Britain’s smallest mother has described the difficulties of caring for a baby son who is almost as tall as her.
Amanda Moore, 25, of Hinckley, Leicestershire, risked her life to give birth to Aidan, now aged 14 months.
She has a rare bone disease which stunted her growth at 3ft 1in (0.9m) and left her unable to stand.
At 2ft 6in (0.7m), Aidan is taller than his mother when she is seated. Ms Moore said: “Now he’s walking he’s more than a handful for someone my size.”
She said she believes Aidan could end up being as tall as his father, Steven Fyfe, 20, who is 6ft 1ins (1.8m).
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Most boys are bigger than their mums but not after a year Amanda Moore
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Ms Moore added: “When I sit on the floor to play with him, he is taller than me already and he’s only 14 months old.
“He’s getting so big and strong that soon we’ll have to tell him to be gentle with Mummy.
“It’s been a struggle because he’s been running rings around me since he was crawling.
“Most boys are bigger than their mums but not after a year.”
Ms Moore suffers from osteogenesis imperfecta – commonly known as brittle bone disorder.
‘Very lucky family’
Born with 14 broken bones herself, she said doctors warned her becoming pregnant could prove fatal.
But Aidan was born in February 2009 weighing 5lbs 5oz and had not inherited his mother’s bone condition.
He now weighs 22lbs (9.9kg) – almost half his mother’s four stones (25.4kg).
Ms Moore said: “Soon Aidan will be bigger than me and we are working out how I can move him around the house in my chair while Steven is at work.”
The couple said they have not ruled out having another child.
Mr Fyfe said: “It’s been a struggle but Aidan is doing so well.
“He’s a big boy and will soon be much bigger than his mother.
“When Amanda became pregnant doctors told us she or the baby could die, or even both of them.
“But they are both fighting fit and we are a very lucky family.”
The bookmaker Paddy Power is courting controversy with a TV advert featuring blind footballers who mistake a cat for the ball in a five-a-side match.
The ad – which is the latest in a series being rolled out ahead of the World Cup and the climax of the Premier League season – has had the green light from Clearcast, the body that vets TV spots before broadcast. It breaks tomorrow night.
The commercial shows two blind five-a-side teams using a ball with a bell inside it. As the ball goes out of play, a bell-wearing cat runs on to the pitch, and ends up being kicked into a tree by one of the strikers.
Paddy Power said that it had to get clearance to air the commercial from Clearcast as the two teams feature real blind footballers, not actors.
Several of the players who feature are likely to represent England in this summer’s World Blind Football Championships. The player who features most prominently in the commercial, Ajmal Ahmed, is the England captain.
“As with our betting we like to have fun with our ads even though there were a lot of procedures and hurdles that we had to clear for the ad to be approved,” said Adam Perrin, the head of brand for Paddy Power.
I think this is really bad. I don’t know why any regulator would want to clear it. Their defense is wrong- it is because these are real, professional blind footballers that there is such a problem with the ad. Don’t the people at Paddy Power know how much time and effort goes into training for Paralympic sport? Don’t they know how much effort Paralypians put into NOT making such a mistake? No Paralympians deserve such ridicule.
And this is just a DisAbled person’s reaction. Don’t even get me started on what animal rights campaigners will say to a person kicking a cat into a tree!
Click the link above to play the ad.
What Does The Labour Party REALLY Think Of Wheelchair Users?
I read something about this poster last week, but by the time I went to look at it it had thankfully been removed from the Labour Party website. I’ve just found a copy on a Facebook group that was set up last week in protest at the poster. I am shocked by it, and I think all wheelchair users need to see it so close to a General Election.
I have close friends in wheelchairs, and where they’re not welcome, I don’t want to go. The Labour Party has some serious explaining to do about why such a poster was ever allowed to appear anywhere in their election campaign. It’s a good thing that it was removed, but the question is, why was it there in the first place?
Thanks to @goldencaesar, who has just sent this around on Twitter.
A RESTAURANT in a northwest suburb of Adelaide that refused a blind man entry because it thought his guide dog was “gay” was ordered by the Equal Opportunity Tribunal to pay him $1500.
The (Adelaide) Sunday Mail said Ian Jolly, 57, was barred from dining at the Thai Spice restaurant in May 2009 after a staff member mistook his guide dog Nudge for a “gay dog,” a tribunal heard this week.
A statement given by restaurant owners Hong Hoa Thi To and Anh Hoang Le said one of the restaurant’s waiters said that Mr Jolly’s partner Ms Chris Lawrence stated “she wanted to bring a gay dog into the restaurant.”
Mr Jolly and Ms Lawrence were refused entry to the restaurant – which displays a “guide dogs welcome” sign – even after providing staff with a guide dogs fact card.
At an Equal Opportunity Tribunal conciliation hearing on Friday, the restaurant agreed to provide Mr Jolly with a written apology and attend an Equal Opportunity education course, in addition to paying him $1500.
“The staff genuinely believed that Nudge was an ordinary pet dog which had been desexed to become a gay dog,” a statement from the hearing said.
Mr Jolly said while he was happy with the result, the embarrassing incident had dampened his enthusiasm for eating out at restaurants. “It gives you some comfort that Equal Opportunity is there,” he said.
“But I always have that fear now, when I go out.
“I just want to be like everybody else and be able to go out for dinner, to be left alone and just enjoy a meal.”
Thai Spice refused to speak to the Sunday Mail when contacted for comment.
Being a lifelong fan of Neighbours and Home and Away, I have heard many different Australian accents all my life. I think it’s very safe to say that even in the thickest Australian accent, the words ‘guide’ and ‘gay’ sound nothing alike. Besides, readers, I’ve never heard of a gay dog in my life, have you?
MS Awareness Week Started Yesterday
That’s right, readers. This week, 25 April-2 May is Multiple Sclerosis Awareness Week. I wasn’t able to blog about this yesterday as I have only just found out, but anyway, I hope those of you with any connection to MS will use this week to raise awareness of the DisAbility in some way, and have some fun in the process.
For those who don’t know much about MS, there’s some info here that you might find useful.
Doctors Criticise MSP’s Right To Die Bill
MARGO MacDonald’s right to die bill has been widely criticised by a group of senior Scottish health professionals who claim that it “devalues” disabled and terminally ill people.
The controversial End of Life Assistance (Scotland) Bill, launched by the independent Lothian MSP in January, would allow doctors to assist those who want to end their lives.
The bill would require those seeking assisted suicide to be either terminally ill or “permanently physically incapacitated” but critics say changing the law for a few determined individuals will only endanger vulnerable people.
Yesterday, a group of 16 senior specialists involved in palliative care treatment claimed that the bill, if it becomes law, could threaten the well-being of hundreds of thousands of people for the sake of a small number who want to control the timing of their own deaths.
In a letter to The Times, the health group says: “This sends a message to all disabled and terminally ill patients that somehow because they are dependent on others they are of less value and so may feel that they ought to bring forward the time of their death.”
The letter comes just three weeks before the deadline for submissions in evidence to the special committee set up at Holyrood to study the bill.
Ms MacDonald, who has Parkinson’s Disease, said there was a difference between euthanasia and assisted suicide.
She said: “The notes accompanying the bill make it abundantly clear the proposals rest on patient autonomy and that no other person would legally be able to end another person’s life.”
Major Phil Packer Has Completed The London Marathon
Many thanks to all those who have just told me on Twitter that Major Phil Packer has completed the London Marathon for the second year in a row. This year, he set himself a challenge he called 26- to run the 26 miles in 26 hours for 26 charities supported by 26 young people.
My congratulations and best wishes go out to Major Packer, who continues to be an inspiration to me and to many people with many different DisAbilities, and, I hope, many people without any disability at all. He is well and truly DisAbled.
Autistic-Like: Graham’s Story
I’ve just found a link to this on Twitter via @ENABLEScotland. It’s the official website of a documentary made by the father of a boy called Graham, who was described as ‘autistic-like’ by some doctors.
Autistic-Like: Graham’s Story explains one father’s struggle to get a clear diagnosis and the right treatment for his son, and to find the right words to describe his disability.
I know that many of my readers are interested in Autism, so I am publicising this documentary in the hope that some of you might find it useful. Your comments are very welcome, as always.
Man Remanded In Custody Over Philip Holmes Murder
A 22-year-old man has appeared in court charged with murdering a disabled man whose body was discovered in a flat in Rhyl, Denbighshire.
Martin Mather, of Rhyl, appeared at Prestatyn Magistrates’ Court, accused of killing 56-year-old Philip Holmes.
Mr Mather was remanded in custody by district judge Andrew Shaw to appear before Mold Crown Court.
Mr Holmes’ body was found on 16 April. It is thought he was seriously assaulted.
Mr Holmes, who used a frame to walk following an accident, was said to have been “well known” in the area.
Anyone with information, or who knew Mr Holmes, is asked to contact police on 0845 6071001 (Welsh language) or 0845 6071002 (English). Alternatively, they can call Crimestoppers on 0800 555111 or text 66767.
Man Due In Court Charged With Philip Holmes Murder
A 22-year-old man is to appear before magistrates later charged with the murder of a disabled man.
The body of 56-year-old Philip Holmes was discovered in a flat in Rhyl, Denbighshire, on Friday, 16 April.
North Wales Police have said Mr Holmes, who used a frame to walk following an accident, had been seriously assaulted and items were missing from his home.
The man accused of Mr Holmes’ killing is due to appear before magistrates in Prestatyn on Monday.
Anyone with information, or who knew Mr Holmes, is asked to contact police on 0845 6071001 (Welsh language) or 0845 6071002 (English). Alternatively, they can call Crimestoppers on 0800 555111 or text 66767.
Danny was diagnosed with autism when he was three years old. He is now 16 and, alongside his severe learning difficulties, this year he has been in and out of hospital with chronic gastrointestinal problems.
He is often in intense pain and is on a fair bit of medication. We keep daily charts, we observe changes in minute detail, we adjust dosages – it is like a meticulously calibrated battle plan.
‘Fantastic guy’: Virginia Bovell fears for the future of her autistic son Danny
When he is well, it is as if he doesn’t have a care in the world. He is cheerfully non-verbal – he has only a few words, such as ‘momma’, and ‘diddle’ for daddy. He is also happily and unresentfully dependent on others for most of his waking life.
On a good day I am optimistic for Danny, but if I’m honest, worry often keeps me awake at night. Because he doesn’t speak, and understanding him requires close observation, I wonder who will love him enough to give him the levels of meticulous attention that a parent would.
But besides being loved by his father and me, he is blessed with a strong network of friends and support workers who I know will always look out for him.
We receive financial help from Islington Council, which means I can employ a support worker for Danny when he isn’t at school.
This money covers only eight hours a week, but I am fortunate to be able to pay for more myself. I know from my work with the National Autistic Society and with Tree House, the autism education charity I helped set up, that some families battle to get any funding at all.
There are residential care homes but many adults with autism still live with their families, even in their 50s. Parents who have given up work to support their child are faced with the awful prospect that there will be no one to fill their role when they die.
I hope one day Danny will achieve enough independence to live on his own. But he will, as far as I can tell, need some kind of care for the rest of his days.
Mother’s love: Virginia with Danny, aged four
He can dress himself, but without guidance he would more often than not choose to walk down the road in pyjamas, back-to-front and inside-out. He has a right to do this, of course, but on the other hand he has a right to be protected from ridicule, not to mention traffic hazards to which he is still oblivious.
Just like any parents, we are hoping he will have a safe, fulfilled, stimulating and enjoyable adulthood. What this means in practice for Danny is rather different, though.
Trampolining is likely to be a permanent source of joy, and I hope he will acquire enough independence to feel pride in making his own toast, cleaning his teeth unsupervisedor accessing YouTube – which he loves – on his own.
Although it has been a hard time for Danny, last summer he was reunited with an old friend. Eight years ago I took him to a local funfair. He seemed interested in a ride called Deep Impact. Kevin, the man working the ride, led Dan to a seat, fastened him in and gave him a specially organised solo experience, going at half speed.
Danny loved it, so Kevin gradually increased the pace. By the time it was operating at its violent, nausea-inducing maximum, Danny was shrieking with joy and bouncing up and down with excitement. After that, we would take Danny to the funfair summer after summer, and Kevin always looked after him.
Then adolescence started and Danny no longer seemed interested in the fair, or even going out at all. It was as if the pressures of growing up, combined with sensory overload and wariness of change, piled up to overwhelm him for a while. The sudden noise of a child’s highpitched cry in the GP’s surgery required me to physically restrain him from lashing out.
It was sometimes a struggle even to coax him out of the front door unless he knew he was going to a place he felt safe and happy, such as home or school.
Last summer he started to feel better again and suddenly, out of the blue, the Bank Holiday found Danny firmly leading his carer a mile up the road to North London, so he could experience once more the thrill of the Finsbury Park funfair.
Kevin spotted him immediately and dashed over to greet him, and Danny enjoyed two sessions on the ride.
Kevin treats Dan as a real friend, someone to be respected and taken seriously. I like to think of my son going back to the fair over many more summers, and hope Kevin will be there for him.
Too much attention has been paid to discovering the cause of autism and not enough to making sure that those who have it can lead happy, fulfilled lives within society. It is now generally accepted that genetics plays a major part. Of course there have been times I have wondered but now, for me, for Danny – and for Kevin – why it happened is irrelevant.
When I asked him if I could write about him, Kevin agreed readily, then paused, thought for a moment and added: ‘I remember all my passengers.’
In other words, yes, it was fine to write about him and Danny, but it really shouldn’t be a big deal. Kevin knows that far from being a sad or embarrassing or unwelcome nuisance who places extra demands and burdens on other people, Danny is a fantastic guy in his own right.
The spectrum of autistic disorders is so broad that children and adults with autism need a whole range of different long-term support structures, education and employment opportunities.
Sadly, at the moment, there isn’t the commitment or money to go round.
• http://www.talkabout autism.org.uk, www. treehouse.org.uk, http://www.nas.org.uk
Man Charged Over Philip Holmes Murder
A 22-year-old man has been charged with the murder of a disabled man whose body was discovered in a flat in Rhyl, Denbighshire.
North Wales Police charged the man over the death of Philip Holmes, 56, who is believed to have been seriously assaulted.
The accused man is due to appear before magistrates in Prestatyn on Monday.
Mr Holmes, who used a frame to walk following an accident, was said to have been “well known” in the area.
Anyone with information, or who knew Mr Holmes, is asked to contact police on 0845 6071001 (Welsh language) or 0845 6071002 (English). Alternatively, they can call Crimestoppers on 0800 555111 or text 66767.
David Weir Denied Wheelchair Marathon Win By Flat Tyre
Britain’s David Weir was denied a fifth London Marathon win after a flat tyre allowed Canada’s Josh Cassidy to overhaul him in the wheelchair race.
The Londoner, who lost in a sprint finish to Australian Kurt Fearnley last year, had dominated from halfway after breaking free of Japan’s Kota Hokinoue.
But a 30-second lead vanished as Cassidy and Switzerland’s Marcel Hug took advantage to take pass Weir.
Cassidy’s London debut win came in one hour 35 minutes and 21 seconds.
Update:
Japan’s Wakako Tsuchida won the women’s race ahead of Swiss Sandra Graf.
The pair edged out defending champion Amanda McGrory in a sprint finish, but Britain’s Shelley Woods, who had led earlier in the race, dropped out of contention before the final stages.
He’s still at primary school and loves to climb trees and ride his bike. But due to a rare genetic condition, 11-year-old Harry Crowther is already turning into an old man.
His skin is thinning, his hair grows slowly and he suffers from the physical problems of a pensioner.
Because Harry’s body is ageing five times faster than other children, he is in constant pain from arthritis and he becomes tired easily.
Harry Crowther’s body is ageing five times faster than his contemporaries – and he is the only person in the world with this condition
His parents Sharron and John know his life will be cut short by the incurable Atypical Progeria Syndrome (APS).
‘I can do a lot of things other children can do, but sometimes it stops me doing what I like doing because I ache.
‘It feels weird and hurts most when I’m in bed’
But the cub scout from Mirfield, West Yorkshire, refuses to be beaten by his condition, and his bravery has been honoured with the Chief Scout’s award for meritorious conduct.
On Sunday he will attend the St George’s Day Parade at Windsor Castle after receiving his award from Chief Scout Bear Grylls.
Harry, who goes to Crossley Fields junior school in Mirfield, is one of only a handful of people in the world to suffer from APS, and no one else has exactly the same form as him.
The oldest sufferer of a similar condition lived to the age of 26.
Harry, pictured with his mother Sharron, takes painkillers four times a day. He said: ‘I get upset when people who don’t know me stare and it’s annoying going to hospitals’
His 40-year-old mother, a preschool deputy manager, said: ‘It’s just a sit and wait game. Because the change in Harry’s genes is unique, they cannot say what’s going to happen.
‘We have had our tears and the “why us?” moments like every family would have, but we have to remember he is walking, talking and is in mainstream school. It is just that his body is a bit different.’
Harry’s skin began tightening when he was a year old, but his symptoms baffled doctors until his parents saw a TV documentary about a girl with a similar condition. He was diagnosed at the age of seven.
Harry’s condition baffled doctors until his parents saw a documentary about a girl with similar symptoms
He does daily exercises to help loosen his stiff and aching joints and takes painkillers regularly.
Mrs Crowther, her husband John, 41, a company director, and their other children Emma, 16, and Jack, 14, are helping Harry to raise public awareness about his condition.
The family have posted a Facebook page with regular updates.
‘His school and his classmates have been brilliant,’ his mother said. ‘He is just Harry to them.
‘If we go out he gets tired and he can’t do activities like football because he has no body fat.
‘But we don’t wrap him up in cotton wool. He is a brave and cheerful boy.’
Harry said: ‘I can do a lot of things other children can do, but sometimes it stops me doing what I like doing because I ache.
‘It feels weird and hurts most when I’m in bed. I get upset when people who don’t know me stare and it’s annoying going to hospitals.’
David Weir Keen To Win Wheelchair London Marathon
Top British wheelchair racer David Weir is hoping to make home advantage count in Sunday’s London Marathon.
Weir has avoided the travel problems suffered by his rivals, including last year’s winner Kurt Fearnley.
The Australian pulled out of the race because of the cloud of volcanic ash but managed to get a flight and arrived in London on Friday morning.
“I’m at an advantage because I haven’t had the problems or jet lag that others have had,” Weir told BBC Sport.
“London is a special race for me and last year it hurt me to lose to Kurt, but especially to have him take my course record from me
“But I had only done seven weeks training ahead of the race so to have been up there challenging at the end in a sprint finish was encouraging.
“This year I have a new racing chair and although it has taken me some time to get it to how I want it, and I’ve had to adjust the seat a lot, in the last two weeks it has felt right and I’ve now got the speed and endurance in my training.”
Fearnley will be hoping to put the problems of the last week to one side when he lines up on Sunday.
After being told on Tuesday afternoon that there was no way he would be getting to London, he admitted that he “relaxed a bit” that night only to wake up on Wednesday morning with a slight headache and the news that he was booked on a flight to London that night.
He is happy to renew acquaintances with the Briton but knows that the rest of the elite men’s wheelchair field have chances too.
“David is one of the toughest competitors I come up against and I know I will have to do well to beat him but it is far from being a two-man race,” he said.
“It’s certainly the toughest London Marathon field I’ve ever seen and one of the best outside the Paralympic Games so it is anyone’s race.”
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We know each other inside out – our strengths and weaknesses
David Weir on London Marathon rival Kurt Fearnley
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Of the rest of the field, Monday’s Boston Marathon champion Ernst van Dyk will be hoping to make it back-to-back marathon wins and claim his first London title with a strong challenge also expected from London debutant Marcel Hug, former winner Saul Mendoza from Mexico and Japanese pair Kota Hokinoue and Masazumi Soejima, who were third and fourth in Boston.
In the women’s race, Amanda McGrory of the United States is aiming to defend her title but Britain’s Shelly Woods, the 2007 champion, who finished sixth last year, will be hoping for a home success.
“This is my first marathon of the season but I’ve trained in Australia and Portugal over the winter and that has gone well,” said Blackpool athlete Woods.
“I’m excited about the race and although London isn’t a course that particularly suits me, I think that I will do better than last year.”
This and other highlights of NAIDEX 2010 are explained in the article below, from BBC News.
Speaks4Me was developed for a non-verbal, autistic boy
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The father of a child with severe autism has developed technology to help him communicate.
Stephen Lodge said the idea for his Speaks4Me system came to him years ago but has been waiting for technology to catch up in order to make it a reality.
His eleven-year-old son, Callum, is non-verbal and uses his father’s invention to speak.
Speaks4Me was on show at Naidex 2010 – the annual disability exhibition at the NEC in Birmingham.
Mr Lodge’s system runs on any device that can run the Windows XP, Vista and Windows 7 operating system.
It uses the concept of dragging and dropping images from one area of the screen to another to form sentences.
The user then presses a speech button to “verbalise” the sentence.
“Callum has been using Speaks4Me for some time now and he has already been able to create some very expressive sentences,” Mr Lodge told the BBC.
Examples include, “I want a drink of juice”, “I want to go outside”, and “I feel tired”.
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Mr Lodge – who lives in South Yorkshire – has 20 years’ experience in technology and developed Speaks4Me after deciding that other products on the market were unsatisfactory for Callum.
He cashed in his savings and raised money on his property in order to finance the venture.
Speaks4Me is currently sold on a portable, touch screen media player imported from the Far East.
But the company is finalising a “software only” price which will mean that it can run on any Windows laptop, desktop or even an interactive plasma white board in schools.
Mr Lodge says that several people have already tried the system.
“It’s fabulous to see how such an exciting but simple concept is well understood by the children that have been introduced to it,” he said.
Mr Lodge estimates it takes half an hour or less to be able to understand and use the system.
He is also hoping that it will prove useful to stroke survivors – about a third of whom lose the ability to speak, either temporarily or permanently.
“Imagine waking up in hospital, not being able to speak: how would you ask for the toilet?” he said.
Speaks4Me currently retails for about £2,000.
Mr Lodge says his future plans include being able to put his software on other portable devices such as mobile phones and gaming handsets.
On call
Also having its UK launch at Naidex was a French product called the Minifone.
The device can summon help and take incoming calls
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It is being sold in the UK by Essex-based PivoTell which describes the product as the world’s smallest digital cordless phone.
Designed with older and disabled people in mind, the Minifone is worn like a wrist watch.
It can be used to summon help from three pre-programmed numbers and has the additional option of being connected to a call centre.
Provided that the landline has caller line identification (CLI) enabled, the Minifone will also display the date and time and the name or number of an incoming caller.
The Minifone uses a built-in speaker and microphone.
“The experience in France has been that – unlike alarm pendants which have a certain stigma attached – people find these quite attractive and so are more likely to be wearing them,” said Adrian Milne of PivoTell.
The device costs £150 and a subscription to the call centre is £10 per month.
Naidex 2010 was at the National Exhibition Centre in Birmingham from 20 – 22 April.
Woman Jailed After Stiletto Stamp Blinded Bouncer
A woman who blinded a nightclub doorman in one eye by stamping on it with her stiletto heel has been jailed for three years and four months.
A sheriff told Sarah Marsden she had inflicted an “appalling injury” on head bouncer Graham Roach outside the Shanghai nightclub in Edinburgh.
Mr Roach lost his eye despite undergoing a four-hour emergency operation after the attack last July.
Sheriff Neil MacKinnon said prison was the only appropriate sentence.
He told 37-year-old Marsden: “You inflicted an appalling injury on the complainer without any thought to the consequences for him or his family.”
Marsden, from Edinburgh, had previously admitted carrying out the assault on 28-year-old Mr Roach.
Her partner Anthony Walker, 49, pled guilty to breaching the peace and was ordered to carry out 180 hours of community service.
The court had been told how Mr Roach went to help a colleague who was asking Marsden and Walker to leave the nightclub because of their drunken behaviour.
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It was a fast incident with tragic consequences for the victim Victoria Good
Defence lawyer |
But after apparently bringing the situation under control, Mr Roach fell to the ground after colliding with Walker.
Marsden then stamped on his face, splitting his eye socket wide open.
Mr Roach is due to undergo further surgery to have an implant placed in his eye to replace the damaged eye ball, although the procedure will not restore his sight.
Defence agent Victoria Good said Marsden had a “sad background” until about two years ago, which involved drug misuse from a young age which was financed by prostitution.
Ms Good said: “When she first appeared from custody the first thing she asked me was how Mr Roach was and how bad the damage was and she has expressed a deep level of remorse throughout.
“She and her partner had gone out for the evening, she had a couple of alcoholic drinks but in no way was under the influence of alcohol and would not seek to use alcohol as an excuse.
“She saw her partner involved involved in an altercation and saw him struggling with the bouncer and she thought he was being hurt and she ran down and became involved. It was a fast incident with tragic consequences for the victim.”
Charity Of The Month For April/May Is… Whizzkids
Dear Readers
The Same Difference charity of the month for 23 April-23 May is Whizz-Kids. This means that exactly half of all donations made to Same Difference through the ‘Donate’ button on the Home page during this month will go to this charity.
To suggest the next charity of the month please email samedifferenceone@hotmail.co.uk
Thanks
Samedifference1
Man Jailed For Abusing Autistic Teenager
This is awful. I can’t understand the way people like this think.
A man who had sex with a “vulnerable” autistic girl after meeting her mother via the internet has been jailed for more than three years.
Kevin Watson, 50 travelled from his East Sussex home to County Durham to meet the woman after striking up a friendship in a chat room.
He then built up a relationship with her 15-year-old daughter.
Watson, of Old Harrow Road, St Leonards on Sea, admitted five counts of sexual activity with a child.
He was jailed for 40 months and placed on the Sex Offenders Register for life.
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There was a degree of trust breached… you are someone that the family looked upon fondly Judge Christopher Prince
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Durham Crown Court heard the offences occurred at the family home while the mother was out, and at a budget hotel.
Prosecutor Jane Mitford said: “The defendant met the mother through the internet and that allowed the daughter access to the defendant.
Reading from Watson’s police statement, Miss Mitford added: “In summary he admits that he took advantage of a vulnerable girl.”
Passing sentence, Judge Christopher Prince said: “You built up a close relationship with the girl to the extent she would text you and call you ‘dad’.
“You must have surely realised that engaging in sexual activity with a young girl of this age, particularly when you were in a relationship with her mother, was likely to cause her real upset.
“There was a degree of trust breached but you were not her father or stepfather, but clearly you are someone that the family looked upon fondly.”
The brother of a murdered disabled man has told how he had moved into a flat and was “getting himself back together” before he was attacked.
Andrew Holmes said his brother Philip, from Rhyl, Denbighshire, was due to celebrate his 57th birthday with family on Saturday.
He was found dead in his flat on 16 April, after being seriously assaulted.
Police are trying to establish the last movements of Mr Holmes, who was described as “a proud, gentle person”.
In a statement, the Holmes family said they were originally from Manchester, but moved to Rhyl 40 years ago.
He was described as “vulnerable but… a proud, gentle person”
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Philip Holmes, one of seven children, was a former pupil at Christ Church School (formerly Glyndwr), and was described as “well known” in Rhyl.
After leaving school he worked with a local coal merchant, but an accident at work at the age of 18 left him disabled and unable to walk without a frame.
His family said he had stayed with friends and lived in hostels in recent years, but had moved into his own flat last month and was determined to improve his life.
Andrew Holmes said: “He was just getting himself back together.”
Mr Holmes’ sister, Carolyn Trehearn, added: “As a family we were all trying to help him make his flat a bit more of a home.
“And we had all planned to take him out for dinner on Saturday so that we could celebrate his birthday as a family.
“He had so much to look forward to. He was disabled and vulnerable but he was a proud, gentle person, who knew he needed help.”
Det Ch Insp John Hanson, of North Wales Police, said: “We are looking at a number of motives.
“There are a number of items missing from the flat and we suspect that Philip sustained his injuries in the flat, but we are keeping an open mind as to whether a weapon was used.
“Philip was distinctive because of his disability.
“He was vulnerable from a mobility perspective and we are appealing to anyone who knew him or who knew of his movements to contact the incident room.”
Mr Holmes was last seen alive at about 1800 BST last Thursday, around 17 hours before his body was discovered.
The death was initially described by police as “unexplained” but on Wednesday officers said they were now treating his death as murder.
Officers conducted house to house enquiries and are trying to build up a picture of his daily activities.
Anyone with information, or who knew Mr Holmes, is asked to contact police on 0845 6071001 (Welsh language) or 0845 6071002 (English). Alternatively, they can call Crimestoppers on 0800 555111 or text 66767.
Liz Prosser fled across the Atlantic 12 years ago with her then six-year-old daughter Tamara to avoid the pair being separated.
Lawyers for Mrs Prosser, 59, who lives near Tregaron, West Wales, said she could now barely travel short distances.
They argued in the High Court in London that a combination of severe physical and psychiatric illnesses meant extradition would cause her “extreme pain” and put her at “high risk” of suicide.
They said removing Mrs Prosser, who requires a stairlift, bathlift and specialist wheelchair, would be “an affront to fundamental humanitarian principles”.
Her alleged offences were “relatively minor” and unlikely to result in custodial sentences, they claimed.
Sir Anthony May, president of the Queen’s Bench Division, and Mr Justice Foskett ruled there was a risk of suicide, but that risk fell “significantly short” of the high legal threshold that would have meant extradition breaching Mrs Prosser’s human rights.
They said assurances had been given that Mrs Prosser would receive appropriate physical and medical treatment on her journey across the Atlantic in the custody of American marshals and on arrival in the country.
They concluded extradition would serve “the necessary democratic aim of preventing crime and maintaining public order by adhering to extradition treaties”.
Mrs Prosser was given 28 days to decide whether to appeal to the Supreme Court.
Afterwards she said she was “absolutely devastated” by the ruling.
Now bed-bound and receiving chemotherapy in hospital once a week, she said: “What’s the point in going on? If I’m forced on to that plane, it won’t be extradition – it will be execution.”
Her second husband, Phillip, who cares for her, said: “Whoever signs the extradition warrant will be signing Liz’s death warrant.”
He told a newspaper: “She is not a terrorist, a murderer or a drug lord. She’s a mother who did what any other parent would do, desperately trying to cling on to her child.”
Earlier, Hugo Keith, QC, appearing for the Home Secretary and supporting the American extradition request, told the court a degree of exaggeration of Mrs Prosser’s symptoms could not be excluded, and “extreme pain” during the extradition process could be mitigated by the use of a stretcher and analgesics.
The court heard that Mrs Prosser suffers from a combination of conditions in which “stress is an important component”.
They included Crohn’s disease, acute fibromyalgia, shingles, severe depression and possible traumatic stress disorder.
Mrs Prosser is wanted for trial in Pennsylvania for allegedly abducting her daughter from her first husband in March 1998, at a time when the child should have been in his care.
She said she believed she was about to be arrested because she had been working in America without the necessary immigration status and would be deported without her daughter, now aged 18.
Mrs Prosser is also accused of fraudulently obtaining $6,750 dollars (£4,512) from a former employer between August and November 1997 by accepting money for fictitious advertisements placed in a magazine.
She denies the allegations.
The court heard Tamara lived with her father in America, but he was content for Mrs Prosser to play an active role in bringing up his daughter.
It was planned she might attend university in Wales and live with her mother.
Fearnley Now Set To Make It To The Marathon
Defending London Marathon wheelchair race champion Kurt Fearnley could yet take part in this year’s event.
The Australian pulled out of the race on Tuesday after his travel plans were dashed by the volcanic ash cloud which stopped UK air traffic for six days.
But the 28-year-old is now booked on a flight which is due to land in London on Friday and is set to race on Sunday.
House of Lords Disability Discrimination Case Makes History
A woman from Warrenpoint has made history in a landmark discrimination case in which the House of Lords clarified the UK’s Disability Law.
Elizabeth Boyle, who suffers from vocal nodules agreed the sum of £125,000 from her former employer, SCA Packaging Ltd.
Ms Boyle brought the case after the company changed her working environment which would have threatened her voice.
The ruling means more people with controlled, recurring conditions are covered by disability law.
It extends protection from discrimination to people with a range of health conditions where symptoms can be managed or may fluctuate.
This could include conditions such as diabetes, multiple sclerosis and epilepsy.
Background noise
Ms Boyle was employed by SCA Packaging Limited as a stock controller at their Warrenpoint factory.
She suffered from difficulties with her vocal chords from 1974.
Her condition required surgery, speech therapy and a strict management regime to ensure the problems did not recur.
This involved limiting the use of her voice, staggering telephone calls, avoiding dusty atmospheres, speaking quietly and reducing background noise.
At a time when Ms. Boyle was following her health management regime rigorously and was symptom free, her employer sought to remove a partition separating her office from a stock control room.
She believed that the increased noise levels would have a substantial adverse effect on her health.
Victimisation
In October 2001 she began proceedings under the Disability Discrimination Act alleging discrimination on grounds of her employer’s failure to make reasonable adjustments for her disability.
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This has been a nine-year battle that caused so much stress to me and my family Elizabeth Boyle
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In May 2002, after 33 years service, she was made redundant and, arising from this decision, she brought further proceedings alleging victimisation and unfair dismissal.
Her legal battle went as far as the Court of Appeal in Belfast before ending up in the House of Lords, then the UK’s highest court.
The Lords’ judgment, which upheld the Court of Appeal ruling, focused on circumstances where a worker’s medical condition is controlled or not current but could recur if the working environment changes.
Previously the law stated that an employer only had to make reasonable adjustments if the chance of recurrence was “more probable than not”.
This definition has now be altered so bosses need to take action if the return of the medical problem “could well happen”.
In effect this has lowered the legal threshold at which employers have a responsibility.
Speaking after the settlement, Ms Boyle said: “This has been a nine-year battle that caused so much stress to me and my family.
“However, because of the ruling made in my case, other disabled people can benefit too.”
The bulk of SCA Packaging’s operations in Ireland and the UK were sold off in 2008 and the Warrenpoint factory where Ms Boyle worked is now under new ownership.
A spokesman for the new owners – SAICA PACK – said they had no involvement in the case.
Ricky Gervais Comedy Pilot Gets BBC Green Light
A TV comedy pilot written by Ricky Gervais and Stephen Merchant has been commissioned for BBC Two.
The 30-minute show centres on Warwick Davis, the British actor who has dwarfism and has starred in the Harry Potter and Star Wars films.
Gervais and Merchant will also appear on screen in minor roles. Life’s Too Short is an observation comedy which follows Davis’s day-to-day life.
“We’re having so much fun working with Warwick,” said Gervais.
“Pound for pound he is one of the funniest men I know,” he added.
Janice Hadlow, controller of BBC Two said: “I’m very excited to see the return of Ricky and Stephen to BBC Two, but also to welcome Warwick Davis, a great talent, to the channel.
“Experimenting with innovative, broad appeal comedy projects are an important part of BBC Two’s plans for the future,” she added.
A date for the pilot has not yet been announced. Merchant and Gervais are also developing the show for HBO in the US.
Their most recent project was Cemetery Junction, a coming-of-age film set in 1970s Reading.
Young iPod Users Risk Permanent Hearing Damage, Warns Expert
I am a young person who loves her iPod, so this article comes as an unpleasant surprise to me. Comments welcome, as always.
Young iPod users may be putting their hearing at risk. Photograph: Ian West/PA
Young people who listen to iPods at full volume are subjecting their ears to the same noise intensity as an aircraft taking off, and could be doing themselves permanent harm, an expert warned today. More than 90% of young people listen to a personal music player, many with the sound cranked up to full volume.
Earphones inserted into the ear canal produce sound levels which can exceed 120 decibels – a similar level to a jet leaving the runway, according to Peter M Rabinowitz, associate professor of medicine at the Yale school of medicine in the US.
Writing in the British Medical Journal, Rabinowitz said MP3 players have become popular so quickly that doctors and scientists have been left behind by technology. They are unable to say what sort of toll they may exact in hearing loss.
“As with mobile phones, the use of personal music players has grown faster than our ability to assess their potential health consequences,” he wrote.
About 16% of adults between the ages of 16 and 69 have impaired hearing in the US, according to Rabinowitz.
He acknowledged that there is no conclusive evidence of damage as yet, but added: “Several small studies have found that reported use of personal music players is associated with worse hearing function in adolescents and young adults.”In 2001, an analysis of health survey data collected in the USA found that 12.5% of children between the ages of six and 19 showed signs of noise-induced hearing loss. But a separate study showed that the hearing of young adults entering the workforce improved between 1985 and 2004.
There are various possible reasons for the discrepancy, he writes. First, the rise in popularity of MP3 players has been so rapid and recent that the full effects may only just be starting to show. On the other hand, most people may not be listening for long enough at high volumes to suffer damaged hearing. A third possibility is that long-term exposure to noise may “toughen” or condition the ears to resist damage – which has been shown in animal studies.
Rabinowitz suggests that a precautionary approach would now be sensible. One measure might be to limit the volume of MP3 players, while more research is done. New European regulations will in fact require MP3s to have a default setting of 85 decibels, which can be overridden if the user wants.
The Royal National Institute for the Deaf said Rabinowitz was right to sound the alarm.
“Our research shows 66% of personal music player users are listening to music at louder than 85 decibels, which according to the World Health Organisation, can cause permanent hearing damage over time,” said the RNID’s Emma Harrison.
Flight Disruption Means Medication Shortage For Sophie, 23
Stranded in Malaysia after her flight home was cancelled, Sophie Longton is running short of medication and her health is worsening.
Sophie, who has cystic fibrosis, says her stock of drugs is dwindling and she has started to cough up blood.
“That is a sure sign that I have an infection, but I am still relatively well,” she told the BBC.
“My medication is starting to run out and without it I will get poorly within days. I am getting very worried.”
Sophie, aged 23, an academic mentor in a school in Accrington, has been designated as a priority case for a flight back to the UK.
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I need the drugs to thin the mucus in my lungs and antibiotics to fight infection Sophie Longton, who has cystic fibrosis
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She had been told she would not get home before May 6, but is hoping that as air restrictions have now been lifted she might squeeze on an earlier flight.
She contacted her doctors at Wythenshaw Hospital, Manchester, UK, who have promised to fly her some extra supplies from Australia, as the drugs are not available in Malaysia.
They also warned her that if she gets sick and cannot fly home she should try to get to nearby Singapore for treatment and then on to Australia.
Sophie takes around 40 tablets a day to treat her condition and uses five nebulisers.
“I need the drugs to thin the mucus in my lungs and antibiotics to fight infection,” she said.
Sophie, who was on a family holiday in Bali, flew with her mum to Kuala Lumpur to try to get home, but has been stranded there for four days.
A Department of Health spokesperson said their advice to stranded Britons is to contact local pharmacies, hospitals or doctors if they run out of medication.
“If you are admitted to hospital, contact the British Embassy,” the spokesperson said.
BBC – Ouch! (disability) – Features – Video: The Bubble Club
From quality independent living to punk rock bands like Heavy Load and the Oska Bright film festival, people with learning difficulties are on the rise with more confidence and support than ever before.
Night clubs are the latest thing to hit the ‘learnie’ scene.
This short film by the BBC Ouch! team takes you to an evening of Staying Up Late at The Bubble Club in London’s Whitechapel.
Vodpod videos no longer available.
You Know You’re Deaf When…
A few weeks ago, BBC Ouch’s Charlie Swinbourne received one of those emails we’ve all had, called ‘Child of the 80’s.’ This inspired him to contact some friends and compile a similar list for Deaf people. The result is two articles at Ouch! which I thought I’d link to here, just because, even though I can hear, they made me smile.
You Know You’re Deaf When… Part 1.
You Know You’re Deaf When… Part 2.
You know something, readers? This list has inspired me. If you can think of anything that belongs on a ‘you know you have (insert DisAbility) when…’ list, please let us know in the comments, or by email to me at samedifferenceone@hotmail.co.uk. If this gets enough reaction, I will compile lists and put them up here, and name all the contributors.
Defending London Marathon wheelchair race champion Kurt Fearnley has been forced to pull out of this year’s race because of travel problems.
The 28-year-old Australian’s plans were dashed by the volcanic ash cloud which stopped UK air traffic for six days.
“I’ve worked really hard to be ready for this race and can’t believe it’s not going to happen,” he said.
“The organisers have done everything they can to get me there but it’s just not possible.”
Fearnley, also the Paralympic marathon champion, pipped Britain’s David Weir in a sprint finish 12 months ago to win the London crown for the first time.
His fellow Australian Christie Dawes, who was fifth last year, has been forced to pull out of the women’s race for the same reason.
Race director Dave Bedford said: “We are very disappointed to lose our reigning champion.
“Kurt has raced here for the three years and we were looking forward to welcoming him back as champion and course record holder.
“Unfortunately, circumstances have conspired against us this time.
“However, despite losing Kurt and Christie both the men’s and women’s wheelchair fields remain top quality and we fully expect two thrilling races on Sunday.”
Fearnley’s absence leaves five-time champion Weir as favourite to win his home race. However, he will still face a tough challenge from South African Ernst van Dyk, who won his ninth Boston marathon title on Monday.
Van Dyk will be travelling from Boston to London via Spain along with a number of other elite wheelchair competitors, including Wakako Tsuchida, the Japanese athlete who won the women’s race in Boston for the fourth consecutive year and Amanda McGrory, the defending London champion.
