Tuesday, July 28, 2009

Firm wants to put charity in this space

A HENLEY marketing company is offering its staff's skills to one charity for free.

CAS marketing, of Hart Street, wants to find a local good cause, which would benefit from help with promotion and publicity.

The firm already works in the disability sector, having recently won a contract to promote one of the country's major providers of mobility aids and managing public relations at the UK's leading disability exhibition.Public relations manager Andrew Gubbins said: "It is important for us to help the local community and we always look to put something back in. We would love to put our expertise to good use and help a local charity. Marketing advice can help them get their name known so more people can see the good work they are doing.

"There are so many excellent charities in the area, all of which are worthy, but some are better known than others. That's where we could help."

The business was started in 1992 by Mr Gubbins' mother, Jenny, who is now the managing director, and has six staff.It has clients in a variety of industries, including marine, construction, home interest, beauty and information technology.

Mr Gubbins said CAS backed the Standard's Think Local campaign, which encourages businesses and residents in the Henley area to use each other.

He said: "It is a very good idea and perfect for these tight financial times. It is something we have always tried to do. All our staff come from the area and we look to support businesses and retailers in the town.

"Henley has an awful lot to be proud of and it is important to keep that strong community spirit alive. Independent companies and retailers add so much to the area and we need to do everything we can to keep them going."

For more information, visit www.cas-marketing.com
 

Heney Standard, 27th July 2009 

Parliament: MPs in disabled benefits revolt

Lynne Jones, MP for Birmingham Selly Oak, said the Welfare Reform Bill, which would introduce means-testing and cut entitlements to incapacity benefits, would affect up to 170,000 people. She warned the proposals would act as a disincentive to training for work and discourage people from saving for their retirement.

Under the planned legislation, the entitlement to disability allowance would be changed so that instead of a person having to make national insurance contributions for a total of one year in the course of a lifetime, he or she had to make one year's contributions in the past two years.

The MPs are also putting down an amendment to block plans to start means- testing the benefit, which would deny payments to people who had saved for their own pension.

While the rebellion includes a number of prominent left wingers, it is also supported by David Hinchliffe, chairman of the Health Select Committee and Gwyneth Dunwoody, chairman of the Transport Select Committee.

The Government previously suffered a setback over its approach to welfare reform when 47 backbenchers voted against cuts to single parents' benefits in December 1997. Ms Jones said she hoped the Government had learnt its lesson: "We hope they will see it's better to climb down straight away."

Alistair Darling, the Secretary of State for Social Security, will meet the rebels on Thursday ahead of a Commons vote next Monday amid accusations that he is seeking to rush through the Bill.

The Independent, 27th July 2009

Going nowhere: My life in a wheelchair

Able-bodied people certainly have no idea about the challenges faced by those in wheelchairs. I know ? I was one, until a fortnight ago. And like almost everyone I know, I assumed that in our tolerant, modern society, a wheelchair user ought to be able to get on with some pretty ordinary daily activities without too many problems. I was even dimly aware of a lot of whinging from shops and other businesses about all the improvements they have been forced to make to their premises in recent years in order to comply with disability legislation, so things must surely have improved.

Boy, how wrong can you be? Two weeks ago, after an unfortunate encounter with a car while riding my bike home from work ? note to drivers everywhere, if you look before turning right you'll find far fewer cyclists riding into you at speed, and spend less time waiting around for ambulances and police cars ? the nice accident and emergency doctor had some bad news. "You've broken your pelvis in three places," he said, doing his best to look focused while the self-harmer in the next cubicle screamed the place down. "There's no treatment as such, other than six weeks' bedrest."

Within a day or so, I decided I wasn't going to take that advice ? literally or metaphorically ? lying down. As pelvic fractures go, these breakages are relatively straightforward ? just big cracks, really ? and though I knew I couldn't walk, there was one way to carry on working while resting, and maybe even get a bit of play in too. Hiring a wheelchair ? pretty cheap and quick thanks to the internet ? was going to transform my recovery period.

So it did, and has. Now I can get from the bedroom to the study to the bathroom and back again without having to scream with pain. I can even wheel myself to the other end of the room where my ? about to be ? long-suffering wife has cruelly left both the painkillers and my chocolate supply within a clear line of sight. What I hadn't banked on, however, was the difficulty I would face trying to use my wheelchair outside of the home.

The first problem is the terrain. Have you ever noticed the cracks, bumps and gaps in the typical pavement? Well, if you're in a wheelchair, those imperfections the local council hasn't quite got round to dealing with can turn into crevasses that threaten to pitch you on to the floor at any moment, or leave you with one wheel stuck off the ground, rendering any movement other than some redundant circling almost impossible.

Our high street, in a relatively well-to-do suburb on the edge of London, seems to have been surfaced by an army of drunks intent on leaving mantraps every few yards. What should be an easy self-propelled jaunt for a wheelchair user becomes ? for me, anyway ? a terrifying and exhausting journey. Either I push myself, becoming increasingly frustrated about how difficult progress seems to be, or someone pushes me, leaving me in a permanent state of panic about the possibility of another painful crash.

That's before you decide to venture into a shop, of course. After 10mins of pushing and pulling, a coffee might be just the thing, and here's our local branch of Costa. As I remember from pushing babies' buggies in and out, there's no annoying step to navigate and the door is extra-wide. Should be a breeze.

Just one problem. The thing about extra-wide doors is that they turn out to be extra-heavy if you're trying to push them open from a seated position where you've got little purchase. It takes all my strength to cross Costa's threshold, though the people inside ? both staff and customers ? are some help. Not that they intervene, you understand. No, the way in which they watch me struggle without coming to my assistance annoys me so much that I produce enough adrenalin to complete the task of penetrating their comfortable space.

It's my first experience of seemingly being rendered invisible by the fact that I'm sitting in a wheelchair ? but it won't be my last. After a restorative coffee, we call into the photo shop next door, to pick up some mugshots for my passport renewal application form. Unlike Costa, this shop has a small step to navigate, which I find pretty tricky. And, as an added bonus, I'm about to get a masterclass in the way in which wheelchairs seem to disempower their users.

It's me who needs the photos, so it's me who asks the shop assistant for help. It will also be me, in a moment or two, who pays the bill with my credit card. So why then, throughout this transaction, are all questions directed at my wife? All conversation, in fact. Does my wheelchair-bound status render me incapable of speaking for myself, let alone engaging in a spot of polite small talk? I'm pretty sure that, when I broke my pelvis, my brain wasn't injured at the same time, but I am being treated like a helpless child.

In fact, it's not a bad lesson for me as a parent of three toddlers. Now I know why they have tantrums when people talk to me about them as if they're not even there, taking decisions on their behalf without asking their opinion. I feel like having a tantrum myself.

Of course, I don't stamp my feet (not least because it would hurt like hell). Instead, I come over all British, accept my fate and leave the shop politely, hoping for better treatment elsewhere.

It doesn't happen. Over the next few days, the photo shop experience is repeated with remarkable regularity. Turn up in a shop with my wheelchair and any members of my family and all business apparently has to be conducted through them. Turn up without them, so that staff have no choice but to deal with me, and I am invariably patronised.

Oddly, back on the street, there is a group of people who do seem to notice the fact that I'm in a wheelchair ? the small but significant number of people who want to prove they've noticed me by being as inconsiderate as they possibly can.

So, for example, I'm struggling to propel myself up a gentle incline and the pavement has been partially blocked by a sack of rubbish. Does the woman coming the other way acknowledge that there's room for only one of us to get through and that the sweaty bloke trying to push himself uphill probably doesn't want to have to stop and lose all his momentum? Does she heck ? instead, she puts her head down, speeds up and forces me to wait.

What about the bloke in the post office, who watches me negotiate my way through a narrow aisle? He could move aside to save me having to go all the way round to the counter, but that might involve taking a couple of steps forward. Instead, he turns his back on me and carries on talking to his mate, oblivious to the complicated reversing manoeuvres I'm now trying ? and failing ? to execute.

Interestingly, this attitude appears to be learned rather than inherited. By contrast, children seem to treat wheelchair users as they would anyone else, barely registering the fact that you're travelling under wheel-power rather than on your legs.

My own three-year-old Harry no doubt behaves that way because he has been brought up impeccably (if only), but he's not the only one. Other small children seem to hardly notice the chair, just as they also seem oblivious to race or obvious physical disability. We turn up at a pre-school fun day and Harry's friends invite me on to the bouncy castle, oblivious to my protests that I'm going to find it a little tricky.

Some adventures in the wheelchair prove more traumatic than others. If you're in a wheelchair because of a traffic accident, it's not unreasonable to feel a little nervous about traffic. It's a pity then that the streets of central London leave wheelchair users with little choice but to take on the cars on their own territory.

In our haste to cross a road on the way to a children's theatre production, a long-promised treat for Harry ? more of the joys of theatre in a wheelchair shortly ? my wife has pitched the wheelchair off the curb. Our problem now is that neither she nor I are strong enough to get the wheelchair back up the curb on the other side of the street.

This, presumably, is what the dropped curbs you get at corners and sideroads are actually for. Only we can't find one ? none of the roads we walk down seems to have a dropped curb, on the corner or anywhere else. As a result, we're stuck walking down the road, shouting at Harry to stay on the pavement, and hoping that the oncoming traffic will steer round us rather than mow us down.

Will we ever escape? The curbs on either side of the road might as well be 12-foot walls for all the chance we have of getting up them and the traffic just keeps on coming. When we do find a dropped curb, it has been so badly laid that the chair still won't get up it. At last, we reach the theatre itself and ? after 10mins stuck in the road ? finally find a bit of pavement that the wheelchair will get up.

Not that the battle is over. We hadn't, of course, been dim enough to simply assume the theatre would accommodate my wheelchair. We'd sensibly phoned up to ask whether it was still worth me coming. "No problem," the box office told my wife. "We'll give you any help you need".

Well, we certainly are going to need some help. As it turns out, the stalls in this particular theatre can only be accessed via 18 steps downwards, and there's no lift. We could relocate to the circle, I suppose, but this is 15 steps upwards from the foyer. Something of a Hobson's choice.

To cut a long story short, we make it, thanks to some serious disobedience of the doctor's orders about not putting weight through my legs and some judicious use of crutches. But it is not a happy experience. As for the loos, down another flight of stairs, well let's just say the only option is to cross those bruised limbs.

Still, at least the walk back to the car is easier, since we aren't going to fall into the curb trap twice in one day. The route back is a little more circuitous, with our direction of travel determined as much by the state of the pavements as our final destination, but we do make it.

Not that we wanted to drive. When we planned this trip to the theatre, the tube journey was intended to be a bonus item for Harry, who loves travelling this way. Instead, we had no choice but to drive into central London, racking up extortionate parking charges and the congestion fee.

The reason we had no choice, of course, is that London Underground takes a pretty dim view of wheelchair users. A quick perusal of the map reveals that zone one has, at best, half a dozen stations with step-free access to the trains. Out in the suburbs, the picture is even worse.

Now I know the Tube is struggling with Victorian infrastructure and that big chunks of the network are miles underground, making disabled access tricky. But not all of it is like that ? installing a lift in our above-ground local station would be very simple, if only someone had bothered to get round to it.

I'm told that buses are much better at accommodating wheelchair users, but I haven't yet plucked up the nerve to try them. Practically speaking, the bus isn't much use for a long journey and it is also not that long since I was refused access to one with a baby's buggy because someone else already had a buggy on board. So much for public transport for all.

Even the local hospital seems to excel in thoughtlessness towards those with mobility problems. At my first check-up, we very naughtily decide to take advantage of my dad, who has a disabled sticker prominently displayed on his windscreen. But when we park in the disabled bay outside outpatients, we discover a problem. For some unknown reason, the hospital has decided to put bollards all along the pavement next to the space, making it impossible to get the wheelchair close up to the car.

Why would you do that ? is there some bloke laughing himself silly in a CCTV booth somewhere, as injured and disabled hospital-goers try to clamber out of a car and past a three-foot concrete pillar to get into their wheelchairs? Can I expect to appear on YouTube sometime soon, starring as the injured bloke who nearly broke yet more bones as he attempted to vault a bollard using only a crutch and one hand?

It's the little things that really get to you. The door that isn't held open for me at the car park exit and the nurse who is obviously so bored with wheelchair users that she speeds off round a corner while trying to show me to an appointment, leaving me lost on the corridor. It's the shortage of wide aisles at my local supermarket's tills and the tiny little strips of metal in shop doorways that I find so difficult to negotiate.

All these things add up to more than just inconvenience for wheelchair users. For me, anyway, they erode my confidence, leave me increasingly self-conscious about my wheelchair status and in the end combine to make me feel like I won't be welcome in public until I'm back on my feet again.

And, remember, I'm the lucky one. Touch wood, in a few weeks time, these injuries should heal with no long-term effects and the wheelchair will go back to the hire company for good. But I promise here and now that, once that happens, I won't forget what a belittling experience my temporary confinement has been.

We don't even seem to have got the basics right. Our capital city can't accommodate wheelchair users on most of its transport system, or provide them with city centre pavements they can use safely. The attitude of many of us is that wheelchair users are a nuisance and that disabled access is a right to which we can pay only lip-service.

In less than three years' time, London will host the Olympics and another event which it claims is equally important: the Paralympics. Let's just hope the competitors in the latter event don't venture beyond the Olympic village too often: they might just find out how little time people in this country ? and their administrators ? really have to think about a level playing field for those with mobility difficulties.

Let me end, then, with a second apology. I hope I haven't been as inconsiderate in the past as many of those I've encountered during my weeks on wheels. But I know I haven't really thought about how difficult we make life for wheelchair users in this country. And I'm ashamed to be part of a society that hasn't made a monstrous fuss about this scandal.

'For wheelchair-users, it's all about mindset'

Mike Smith, consultant, aged 42

"I was born with a neurological condition which means I have always used a wheelchair; I went to a conventional primary school and then a specialist school between the ages of 13 to 18, but I'm against segregated education.

Life for a disabled person in England has improved considerably, especially since the introduction of the Disability Discrimination Acts of 1995 and 2005, but I would still say we are only 60 per cent there ? there is still plenty of the Tube we can't use, and plenty of stairs to buildings without alternative access.

But I think a good way to look at life is not to define yourself as disabled by your impairment ? you are disabled more by the infrastructure, other people and their attitudes.

I am sure David will learn a lot from being temporarily in a wheelchair ? he will be experiencing a range of perspectives. But the most basic difference between his experience of life using a wheelchair and mine is that he probably isn't particularly adept yet.

And I am sure my experiences are different to someone who didn't have my economic options ? I had a university education, have a successful career, live in comfortable accommodation, have travelled the world ? so I have led a really fantastic life.

You can do anything if you have the right mindset. It's about doing things slighty differently and not feeling like you're being judged. And I think you'll find very few people that feel sorry for me."

Interview by Rob Sharp

The Independent, 27th July 2009

Banned MND advert: is my pain really too shocking for television?


Motor neurone sufferer Sarah Ezekiel explains why a banned advert in which she appears must have a wider audience.

It is the advertisement deemed too shocking for you to see. At any age, any one of us could be struck down with motor neurone disease – a fatal condition that robs its victims of their mobility, leaving healthy minds trapped within wasted bodies. But witness its ravaging effect on a real-life sufferer? That, the television censors have decided, is too graphic for viewers to handle.

There is no denying that the MND Association's new advertisement is profoundly disturbing. It is 90 seconds of powerful and, at times, shocking imagery. In its opening scene a young woman walks into a room to be confronted by a wheelchair. As she gazes quizzically at it a steel door behind her slams shut. In an instant her body is smashed against a wall. Choking and struggling for breath, she is thrown around the room like a rag doll as her clothes are stripped off, leaving her thrashing on the floor. Her limbs, twisted now and wasted, writhe in agony as she is pulled along the floor. A close-up of her ravaged body, clad only in underwear, reveals a pitifully thin and withered frame. In the final scene she sits slumped and twisted in the wheelchair, unable to speak or move.

It is only then that we learn what the advertisement – screened as ''Sarah's Story'' – is about as a voice tells us: ''Now you know how it feels to get motor neurone disease. Help us fight back.''

While disturbing – which is exactly what it was designed to be – it is hardly the stuff of censure. Yet last week, when the charity sought permission from Clearcast, the television watchdog, to air it, the authority said no, claiming that ''even good-cause advertising is capable of causing widespread general offence''. Defending its decision Clearcast said: ''We felt the level and amount of distressing and disturbing images went too far for television broadcast, even late at night.'' It admitted that the viewing public was more tolerant of violent, shocking or disturbing images in charity advertisements but said: ''The broadcasters' concerns related solely to the distressing nature of the images shown with no understanding of what the ad is even for until right at the end."

Clearcast, which is responsible for the clearance of television advertisements, bases its judgments on a variety of factors including good taste, decency and a variety of technical, legal and medical constraints.

Frustratingly for the charity, the ban means that the advertisement, vital in its campaign to raise awareness and fund much-needed research into the incurable disease, can now only be shown in cinemas. To date, five film-goers have complained about its content but, when the Advertising Standards Authority was asked to rule on its suitability, it gave the short film a clean bill of health, asking only that it be shown following films for those over 15.

''It's quite unbelievable that Clearcast has banned it, yet the ASA is more than happy with it,'' says Donna Cresswell, the charity's director of communications. ''We are allowed to watch adverts for all sorts of controversial subjects, such as condoms or abortion clinics. Yet when it comes to showing the truly shocking sight of how swiftly this disease destroys peoples' lives, we are not allowed to see it.'' What is all the more worrying is that it has had exactly the desired effect. Since the charity began screening it in cinemas, donations have increased and the numbers offering help and support practically doubled.

For Sarah Ezekiel, whose ''story'' it is, and whose limbs were filmed for the advertisement, the ruling has been a devastating blow. Diagnosed with MND at 34, she knows how devastating the disease is: the film's graphic depiction of how it feels to have one's body attacked, to witness how swiftly MND transforms healthy, mobile limbs into deformed and paralysed body parts and how one is robbed utterly of all dignity and control is, she believes, the only way to ensure that more people are made aware of the horrific physical and emotional impact of the disease. ''How many people know that MND can affect any adult at any time?'' she asks. ''How many know that its cause is unknown and there is no cure? Or that at least five people die from it each day in the UK?''

Making the film was, for Sarah, physically and emotionally gruelling. Although the actress Philippa Johnson performed the opening scenes, the lingering shots of frail and wasted arms are of Sarah's own limbs. ''It was tough, but so very, very worthwhile,'' she says. ''I am so very proud of it. And I'm afraid the only way to relay the true horror of MND is in a shockingly vivid way. In fact the film doesn't really convey the reality of this disease. The reality is far, far worse.''

This week the MND Association is hoping again to press Clearcast to reconsider. The charity has already said it would be happy to have the film shown only after 10pm and not following a programme aimed at family viewing. Clearcast, however, refuses to budge, although it would allow the film if the scenes showing Sarah's deformed limbs were cut. But as Sarah points out, the whole point of the film is to show, and show graphically, how quickly the disease progresses. Though it affects only 5,000 Britons each year, life expectancy for sufferers is low – between two and five years. Don Revie, the Leeds United manager, and David Niven, the actor, both died from MND. Perhaps the best-known sufferer is the scientist Stephen Hawkins. He, however, has a peculiar strain of the disease and his longevity is the exception rather than the rule.

Now 43, Sarah has survived much longer than the majority of MND sufferers. In that time, however, she has lost almost all mobility and, devastatingly, her speech.

A single mother with two children, she can only communicate through a computer. She taps out letters using a pad that is attached to her chin and a synthesised voice ''speaks'' her words. It is a laborious process but is, for Sarah, a lifeline. To have an active mind trapped in a body that no longer works, she says, is to suffer the isolation of the captive. ''There were times when I wanted to end my life,'' she admits. ''And, frankly, my husband didn't want a disabled wife. He would have taken me to Switzerland where I could have committed assisted suicide with Dignitas. But, over time, my feelings have changed. And I don't now support euthanasia. But I know how terribly alone I have felt. There was definitely a time when I would have killed myself. But I was just too scared to do it. And I could never have done that to my children.''

As she sits, propped up by pillows, on the sofa of her Hendon home, her arms and hands lie twisted and useless on her lap. She has a little movement in her neck, which is how she is able to tap out words and, when one of her carers lifts her to put her into her wheelchair she can shuffle along the floor in small, painful footsteps. Sarah can make sounds that can sometimes be understood but, increasingly, her voice synthesiser is her only means of communication.

When first diagnosed in April 2000, Sarah was married and seven months' pregnant with her second child. Like many with MND her initial feeling was one of denial. At first she noticed only a slight slurring of her speech. Then her arms and legs became weaker. ''But I made absolutely no effort to research the disease, because I was in such denial. I decided that the neurologist was wrong about the disease being progressive and that my symptoms would disappear after I had given birth. But reality came and smacked me in the face two days after I gave birth to my son. I was reading a newspaper and there was an article about a woman with MND who wanted euthanasia. She had children too and I remember thinking: 'If she would rather die than be with them then this is going to get really bad – I am a dead woman walking.' I looked at my beautiful baby and started to cry. And I didn't stop for a very long time.''

Within a year of Eric's birth, Sarah's condition had deteriorated badly: she had lost much of the power in her limbs and her speech was barely audible. Her husband was unable to cope with her disability and the marriage broke down. ''He could no longer see the real me,'' she says. ''Losing the use of my arms was heart-breaking. I so missed hugging the children. Then I started to miss practical things like reading, writing letters – everything, in fact, that we take for granted.

''I was petrified of death while trying to adapt to the physical changes taking place within my body. Eventually, five years ago, we divorced and I was granted full custody of the children. I can't say I have never felt depressed and hopeless. Or that I haven't begged my doctor to 'put me down', because that would make me a liar.'' A visit to her local hospice in 2001 helped restore Sarah's faith that she could have a productive life. Slowly she regained her confidence and no longer suffers from depression, although she admits it has been a long and difficult road.

When the MND Association contacted its members seeking someone who would be interested in helping with its new advertisement, Sarah said yes immediately. She was delighted with the end product. Then shattered when it was banned. ''It makes me feel as though they want to hide away MND sufferers,'' she says. ''It's as though we are lepers. I am not ashamed. I am just different. More awareness of MND could help lead to a cure.''

Such a sophisticated film could have cost around £1 million to make, but Jim Weedon, from Bare Films – whose credits include the Elysian Fields sequence in Gladiator – and his team of 50 worked for three days for a nominal fee. He, like the MND Association, is stunned and disappointed. ''It's so frustrating and short-sighted,'' he says. ''It was so brave of Sarah to expose herself physically and emotionally. Yes, we could have used clever CGI but it wouldn't have been nearly as realistic. It is hard-hitting. But so, too, is MND. The speed with which it attacks the body is terrifying. Sarah had to endure hours of being dragged around the floor, it must have been incredibly painful for her, but she was determined. And nowhere is it gratuitously shocking. There are many, many more shocking drink-driving or speeding advertisements. It's not a pleasant sight. But that is the whole point.''

Some 90 cinemas continue to show the film and 80 mainline train stations and 18 tube stations have used huge posters referring viewers to the internet where they can see "Sarah's Story".

In the meantime Sarah knows that her prognosis is poor. ''I spent three years wishing I was dead,'' she admits. ''But now I spend every day being thankful that I am not. I don't want euthanasia. I'm scared of what lies ahead but don't think I can choose when to die. So my only option is to get on with it. And I do.

''No one should presume that a diagnosis of MND is the end of their life and that they can't be happy,'' says Sarah, although she is all too aware that she has survived with the disease for much longer than most. ''I am grateful for every moment with my children, although I do wish I could do more with them. My greatest wish is to be around to see them grow up. To have the advertisement aired on television would make all the difference to the publicity we could garner for MND. We have just got to keep hoping that Clearcast will reconsider.

''After all, you can switch off your television. You can't switch off MND.''

To watch the advert, visit www.sarahsstory.org.uk

Telegraph, 25th July 2009

Public supports assisted suicide for terminally ill people

Assisted suicide should be made legal for those with terminal illness, but not for people with a disability, a poll for The Times has found.

Only 48 per cent of those who back a change in the law believe that people with "a severe physical disability, even if otherwise healthy" should be allowed assistance to end their lives. This compares with 95 per cent who support the right for people with a terminal illness to be helped to die. Just over two thirds back assisted suicide for those with a degenerative, though not terminal illness, such as dementia, while 56 per cent support a change in the law for people who are suffering "extreme" pain.

The distinction drawn by the public over different conditions suggests a sophisticated understanding of the ethical issues involved, campaigners said.

The campaigners were frustrated that during the most recent debate on the issue in the House of Lords, on an amendment to the law strictly limited to those with terminal illnesses, it was dominated by opponents saying it would be "a slippery slope" towards introducing assisted suicide for all.

The contribution to the debate from Lady Campbell of Surbiton, a peer born with spinal muscular atrophy, was thought to have been particularly influential. She said suicide reform would lead to "state-sanctioned assisted dying" in which doctors would encourage people with disabilities to end their lives. The amendment was voted down. Debbie Purdy, who has MS and is seeking clarification on the law regarding those who help loved ones to travel to the Dignitas clinic in Switzerland, said that the poll should reassure those who fear any legal change would lead to a "free-for-all".

"Of course, I would support the 65 per cent of people in the poll who want to legalise assisted suicide for those with degenerative diseases. But I think the fact the public are differentiating between conditions should allay the fears of people like Lady Campbell who fear a slippery slope leading to a free-for-all," Ms Purdy said.

Only a third of the public back legalised assisted suicide for a spouse or partner of someone with a terminal illness.

Support for assisted suicide for those with terminal illness was strong among older people with 90 per cent of those aged 65 and over backing the move, in line with other age groups.

Almost a quarter of those aged 65 and over backed assisted suicide for people suffering extreme pain.

Despite popular support for reform, it is unlikely that politicians will act unless it is backed by the medical establishment. Professor Clive Seale, Britain's leading expert on the attitudes of doctors on the issue, does not expect any sudden change from their current opposition to any change. "The majority of doctors and other health workers generally don't like the idea of hastening the deaths of patients, even if this seems humane," he told The Times.

However, he said that yesterday's change in stance of the Royal College of Nursing was significant.

"The RCN's decision to become neutral on this issue may not sound like much, but it represents a pretty big step towards acceptance ... When health practitioners start changing their minds about assisted suicide, governments tend to take notice," he said.

There is also a strongly held view that support for assisted suicide is strong because palliative care is poor in the UK. Hospices, which offer high-quality palliative care, rely on charitable donations and have been particularly badly hit by the credit crunch.

Dan Berry, head of policy at the MS Society, said that he feared people were driven to contemplate assisted suicide because they did not realise high-quality palliative care would greatly improve their quality of life.

"Our research has shown palliative care can help manage symptoms that can make life unbearable. It's a terrible shame if people are contemplating suicide when there is care out there that could make a big difference," he said.

Populus interviewed a random sample of 1,504 adults aged over 18 by telephone on July 17 to 19. For more details go to www.populus.co.uk.

The Times, 25th July 2009

Monday, July 27, 2009

Aspergers ...


web site - www.daveluptoncartoons.co.uk
blog - http://disabilityarts.org.contentcurator.net/?location_id=6

Related Article:

Gordon Brown offers a glimmer of hope for Asperger's sufferer Gary McKinnon

Gordon Brown offers a glimmer of hope for Asperger's sufferer Gary McKinnon

Gordon Brown has given hope to Asperger's sufferer Gary McKinnon in his battle to avoid extradition on computer hacking charges.

Breaking his silence on the case yesterday, the Prime Minister said he was 'sympathetic' to Mr McKinnon's plight.

Mr Brown said the 43-year-old's fight against extradition to the U.S., where he could face 60 years in a high-security prison, raised a 'number of issues'.

 Gary McKinnon
 

Hope: Gordon Brown (right) said he was 'sympathetic' to Gary McKinnon's (left) plight as he faces extradition on computer hacking charges

The High Court is due to rule next week on last-ditch appeals against decisions by the Home Office and the Director of Public Prosecutions to send him to the U.S. rather than putting him on trial in this country.

Mr McKinnon, who is being backed by a Daily Mail campaign, admits hacking into Nasa and Pentagon computers looking for evidence of UFOs and sources of 'free energy'.

The U.S. authorities claim he perpetrated 'the biggest military hack of all time' and that repairing the damage to their systems cost more than £436,000.

 

But experts have rubbished the claim and senior Labour, Tory and Liberal Democrat MPs have all insisted he should stand trial in Britain.

His family and lawyers argue that extradition will lead to 'disastrous consequences', including possible psychosis and suicide, because of his Asperger's, which is on the autistic spectrum.

There are also growing calls for a review of Britain's 'lopsided' extradition agreement with the U.S., which was chiefly designed to deal with terror suspects.

Asked if he was satisfied with the extradition treaty between the two countries, Mr Brown suggested it could be subject to review.

Fight for justice: Gary McKinnon and his girlfriend Lucy Clark

Fight for justice: Gary and his girlfriend Lucy Clark outside the High Court

The Prime Minister said: 'I think you have always got to look at what arrangements you have and whether they are working'.

Mr Brown insisted the agreement had seen violent, drug and sex offenders brought back to Britain. But he added: 'The Gary McKinnon case raises a number of issues and anybody who looks at this must be sympathetic to someone who suffers from Asperger's syndrome.

'However there are court cases pending at the moment, one challenging the Director of Public Prosecutions for his judgment, and I think we have got to wait for the outcome of these court cases.'

Mr Brown said he did not believe voters would support a law giving the Government, rather than prosecutors, 'absolute discretion' over extradition.

Mr McKinnon's mother, Janis Sharp, said: 'I am extremely pleased that the Prime Minister is sympathetic but what we want to see is his Government stopping the extradition.

'It does provide us with a chink of light but we need actions as well as words. I want Mr Brown to stand up for the rights of British citizens.'

Mrs Sharp, who had an emotional private meeting with Mr Brown's wife Sarah earlier this month, added: 'Sarah Brown is a very intelligent, compassionate woman who genuinely cares.

'I hope that some of her compassion has opened his eyes and made him realise there is a real injustice here.' She insisted the Government had the power to halt the extradition and called on the Prime Minister and Home Secretary Alan Johnson to intervene, even at this late stage.

Shadow home secretary Chris Grayling said: 'If the Government is belatedly accepting the argument that things are not right, then that's very good news.

'I hope they really mean it and it's not just words. We want an extradition system that's fair to everyone involved and can respond to individual circumstances.'

The Extradition Act 2003 requires the U.S. to show only 'reasonable suspicion' to secure the extradition of a British citizen. British need a greater level of proof to bring an American to trial here.

Car-park survey reveals most people in UK now disabled

A growing epidemic of disability has been uncovered after a survey of parking needs at shops and railway stations found that over 80 per cent of Britain's drivers cannot walk more than five yards to a cash machine or shop entrance.

'The number of openly able-bodied people is in decline and we are seeing the emergence of a new group, the 'hidden disabled',' said Dr Sarah McKendricks of Westminster University.  'These people refuse to let their disabilities blight their everyday lives, and are characterised by a fierce pride in their independence which can make them angry and even violent if anyone tries to help them.'

Researchers tried to talk to a number of these newly-disabled people, but they all drove off quickly saying they'd 'only been there for a minute'.

NewsBiscuit, 24th July 2009

Dirty Talk ...

web site - www.daveluptoncartoons.co.uk
blog - http://disabilityarts.org.contentcurator.net/?location_id=6

Related Article: Dirty talk for blind people

Sporting Chance For Disabled

A £10MILLION bid has begun to build the UK's first sports centre for disabled people.

The organisation behind the innovative project is Lanarkshire charity Active4All.

It is proposed that some of the cash would be raised by the charity's re-cycling arm Yooz which plans to collect and sell on unwanted building materials which would normally go to landfill. 

Yooz chairman Ian Strachan, who is himself disabled, said the Centre for Excellence for disabled people will have four full-size courts for games such as basketball, a 25m swimming pool, an outdoor running and sports track and several pitches.

It will be designed specifically for people with disabilities but will be available to everyone.

Mr Strachan said: "There is nothing like it in the UK.

"A number of us in Lanarkshire were keen to set up a sports facility because there are not enough."

After three years of research, the group decided what was needed was a sports centre for people with disabilities.

He said: "There are no such custom-built sports facilities in the UK other than the ones which have been adapted to accommodate disabled people.

"At the moment, if people in a wheelchair want to get into a swimming pool they have to be lowered in by a hoist.

"Some people get a bit self-conscious with able-bodied people swimming about.

"There is room for a custom designed large sports facility which can take national or international tournaments.

"There are one million disabled people in Scotland but the facilities for them are shameful.

"The centre will actively encourage disabled people to take part in sports, increase their fitness levels, reduce isolation and provide opportunities to engage in competitive sports at all levels including elite.

"It also has the potential to become a national asset which will generate significant employment and provide regeneration benefits for the Lanarkshire area."

Mr Strachan said the charity is hopes to build the sports centre on a site near Strathclyde Park.

The materials collected through the Yooz scheme would be sorted and either sold on or kept to create the structure of the sports centre.

Mr Strachan said: "By donating surplus building materials, we are providing the Scottish construction trade with a unique opportunity to assist charity and the environment.

"Not only will their participation ultimately help produce the next generation of elite disabled sports people, it also offers them a way to address their landfill targets and taxes."

Yooz aims to divert 400 tonnes of building material, including bricks, timbers, windows, tiles and slabs from landfill in its first year with an additional 200 tonnes every year afterwards.

Anyone who wants to donate materials or find out more can log on to www.yooz.me

Evening Times, 23rd July 2009

Author launches her first book

A book to help children understand disability has been launched in Bath.

Tumbleweed is the first in a collection of five children's books by Jacquie Hobbs Trajan.

Each book is designed around a subject that may be difficult for children to understand, such as death, disability and self-image.

Jacquie, who lives in Oldfield Park with her husband Mark and her five-year-old son Oliver, said: "Tumbleweed is a good stepping stone to tell children about disabilities, as they want to ask questions.

"While each book gives a positive message, I hope they will also be used for further discussion on subjects that can so often be difficult to discuss with younger children."

Tumbleweed tells the story of a bantam who has one leg. This means he finds it hard to play with his friends on the farm and gets blown over by the wind.

He gets very angry but with the help of a false leg, he is able to join in with the games without falling over.

Jacquie, a freelance civil engineer, had always wanted to write a book, and after Oliver was born she started to look at ideas.

She took a break from her job to write and illustrate the stories.

Jacquie said: "I have been thinking about the books for a long time.

"I really enjoy writing them, and it is something that I hope will take off.

"Oliver knows the book inside out, and he has asked questions about disability because of the story."

Tumbleweed was based on a bantam that Jacquie had in the 1970s.

She said: "He started life the same as all the others, but for some reason he was picked upon by the other bantams who would peck at him.

"This we believe caused the brain damage that left him paralysed down one side, so he could not use his left leg.

"He could stand up but on a windy day you could see him tumble along the farmyard, the wind catching him off balance.

"He received lots of cuddles and I thought the world of him."

Jacquie's next book, Tofu, will be out in the autumn and is about the death of a grandparent.

Tumbleweed is available to buy at bookshops in Bath, or through the website www.barnebeepublishing.co.uk

This Is Bath, 21st July 2009

'Hopeless' Phillips condemned for equality watchdog spending

Their findings add fuel to the argument over Harriet Harman's decision to reappoint Trevor Phillips, the high-profile chairman of the Equality and Human Rights Commission (EHRC), for a second term in office.

Though it was not Mr Phillips's personal responsibility to hire staff, a former commissioner, who has worked with Mr Phillips for a number of years, said yesterday that the seven staff taken on improperly were people he knew well.

"If he didn't know what was going on then he is a hopeless chair, in my view," Kay Hampton, who resigned from the new Commission in April, said.

Yesterday's report from the National Audit Office, which watches over public spending, focused on the summer and autumn of 2007, when three government bodies ? for racial equality, sex discrimination and disability rights ? were wound up and absorbed into the new super commission, with over 400 staff and a £70m budget, chaired by Mr Phillips.

More than £11m was paid out in redundancy to staff who did not want to move from the old quangos to the new. But in the run up to October 2007, when the new commission was due to start operations, it was short of 140 staff and 15 out of 25 directors.

Seven staff from the old Commission for Racial Equality, which Trevor Phillips headed in 2003-06, were hired as consultants, despite having just accepted large redundancy cheques. Yesterday's report said there was no evidence there was even a gap between when they left one job and moved into another, but they were not asked to pay back their severance money.

One had received £104,125, and was taken back on for 11 months and paid fees totalling £105,216. In all, it cost £629,276 to make the seven staff redundant, and £323,708 to re-employ them. That decision should have been cleared with the Treasury, who did not find out until later and refused to approve it.

Kay Hampton was Mr Phillips's deputy at the former Commission for Racial Equality, and headed it for 10 months until it went out of existence. She was a commissioner on the EHRC until she resigned in April. Five out of 14 commissioners have resigned in two months, and two more are expected to quit this week. Several have complained about Mr Phillips's management style.

"Although Trevor Phillips and I have been friends at one point ? and were colleagues for many years ? and I don't care about his leadership style, I have to say that these were people who were handpicked by Trevor in the CRE," she said yesterday.

"I'm not surprised by the issues raised in the National Audit Office report. I picked up on some of these issues while I was still there. It reached the point where, for my own personal integrity, I was not going to be associated with the accounts. I'm very pleased that the accounts were qualified. The public deserves to know the truth."

Mr Phillips and his senior staff will face a grilling by the Commons' Public Accounts committee when MPs return from their summer break.

"Poor management and oversight following its creation resulted in EHRC being understaffed and unprepared," the committee chairman, Edward Leigh, said yesterday. "The total cost to the taxpayer of paying off these executives only to bring them back as consultants was almost £1m. The Treasury, when it found out that public money had been used in this way, refused to approve the payments."

Mr Phillips's defenders say that as a non-executive chairman, he did not personally hire staff, and the officials who did have since left.

"Of course it's terrible to get your first set of accounts qualified by the National Audit Office," one said. "But this was a time when they were trying to get a £70m operation up and running, and there was a feeling that they had done well just to get the place open on time."

Harriet Harman's decision to reappoint Mr Phillips last week came as a surprise and provoked three commissioners to resign over the weekend. It was rumoured that Mr Phillips might carry on for a short time before being given a peerage and made a minister, but he has accepted his reappointment and indicated that he means to serve another full, three-year term.

What is the EHRC?

The Commission for Equality and Human Rights was set up by an Act of Parliament in 2006, to replace three bodies ? the Commission on Racial Equality, the Disability Rights Commission, and the Equal Opportunities Commission. It has 410 full-time staff, and employs about 120 agency staff at any time ? slightly fewer than the 620 people working for the three commissions it replaced.

*It is run by a board which, until April, was made up of the chairman, Trevor Phillips, his deputy, Margaret Prosser, and 14 commissioners. Mr Phillips and Mrs Prosser had their terms of office renewed last week, but Harriet Harman told the commissioners they must reapply for their jobs, and that there will be fewer of them. Five have resigned since April and two more are likely to go.

*As well as upsetting some people by management style, Mr Phillips has caused controversy through his strategy for combatting discrimination, dealing with human rights as a whole rather than on racism, sexism etc. as discrete issues. He created waves by criticising multiculturalism, a cause which many anti-racist campaigners hold dear.

The Independent, 21st July 2009

Paralympic Champions Honoured By University

A WIFE-and-husband athletics duo are have been honoured by Crewe's university.

Known as the 'golden couple' of British disability sport, Sarah and Barney Storey, from Cheshire, each won gold medals in Beijing in cycling to add to Sarah's golds in swimming.

The unusual occurrence of two golds for the same family in different events on the same day happened when Sarah set a world record in the individual pursuit and Barney emulated her success as pilot to blind rider Anthony Kappes in the tandem sprint.

Now their achievements have been recognised by Manchester Metropolitan University - one of the leading centres for disability sport research in the UK – which will award the couple honorary degrees.

The couple each receive the title Honorary Doctorate in Science at Manchester's Bridgewater Hall on Saturday, July 18 at the graduation ceremony for MMU's Cheshire Faculty.

Dean of the faculty Dennis Dunn said: "Sarah and Barney Storey are role models not only for young people with disabilities but for all of us.

"Paralympic Champions, involved in charitable work that will help others, and true sporting ambassadors; together they form part of the strongest national squad in world cycling."

Sarah Storey won her first gold medal as a swimmer at the 1992 Paralympic Games in Barcelona and went on to appear win five golds and eight silvers in four Games, switching sports in Beijing to join Barney in the velodrome.

Sarah is also Great Britain's first ever Paralympian to win the title at a Senior able-bodied National Championship event.

Barney is a double gold medallist in the same events at the 2006 and 2007 World Disability Championships and also coaches many of the elite disability riders.

Apart from their contribution to the British team, the couple are also honoured for their support and encouragement to others through Barney's patronage of charity SeeAblility and his valued support as an advocate of MMU Cheshire – home to the university's Exercise and Sport Science Department.

Sarah, a regular coach at MMU Cheshire with the North West Disability Swim Squad, said: "It's a great honour to be involved with sport science research at Alsager.

"It is a fantastic group of people, a wonderful environment for athletes and a great asset to sport in the region."

Crewe & Nantwich Gaurdian, 20th July 2009

44 jobs saved at manufacturing business

Stoke-on-Trent City Council has safeguarded 44 disabled workers' jobs after finding a buyer for a manufacturing business.

The authority has moved to protect all of the disabled workforce at Stoke Workshops, which produces plastic coated wire racking for the retail industry.

The city council, which had run the Fenton-based factory in partnership with Staffordshire County Council, negotiated the sale of the business after it was predicted to lose significant sums of public money this financial year.

After more than three months of consultations with employees, and detailed negotiations, the city council has sold the workshops to local businessman Ivan Timmis as an ongoing concern.

Council leader Ross Irving, said: "I'm thrilled to be able to say Stoke Workshops will continue. This is a tremendous boost, especially in the face of the current recession. We have made a huge effort and great commitment in identifying an alternative to closing the workshops. In light of the credit crunch, the future of manufacturing nationally is difficult to predict, this opportunity can only be seen as a positive chance to secure a future for the disabled workforce."

The council had been forced to seek advice from independent business recovery experts to consider the viability of the factory at the end of last year. It followed a rapid downturn in orders and predicted losses of public money of an estimated £400,000 for the financial year. The experts recommended the workforce be immediately reduced while determining if any of the business might be saved.

Council interim chief executive Chris Harman said: "Once it became apparent that it was unsustainable for the council to continue to operate the workshops, our chief concern was for the employees.

"We have negotiated hard to ensure that everything possible has been done to protect and support all members of staff, and are delighted to say that employees have been transferred. We have consulted with unions, and the staff involved have consistently said they wish to remain in employment."

Ivan Timmis, from Newcastle-under-Lyme, is an established local businessman with more than 30 years' experience in the engineering profession. He has worked for blue chip engineering companies such as Rolls Royce and Vickers, and has vast experience owning precision engineering, metal press, fabrications and powder coating businesses.

He said: "Stoke Workshops has a tremendous history, and I am keen for this to continue. It has always been run for disabled people, and I want to keep at least 75 per cent of the workforce as disabled employees. The staff here are superb, and I would put their skills against any of the engineers I have worked with at big multi-national companies.

"I will be bringing investment to the business, in terms of finance and training. I want the workers to be able to continue to develop their skills and, with my business partner Steve Whilock who is a skilled cabinet maker, will be diversifying the range of products we produce to include wood works.

"The council has done an excellent job in keeping the factory running for so long. I will bring to the business my expertise in the industry and contacts. There is a lot of work to do, but I want to see Stoke Workshops be a long term success."

Steve Boynton, from Fegg Hayes, sets welding and fly press machines and has worked at the factory for 28 years. The 47-year-old, who is blind, is also branch secretary for Community union which helps blind and disabled workers. He said: "This news is a saviour to us. We had initially been told the factory would close and there had been a lot of stress and uncertainty. We did not expect a buyer to be found, and are delighted it has happened. A lot of tension and anxiety has been lifted. Being disabled gives you a fear that if you lose your job there is nowhere else to go and that you'd struggle to get employment. People now recognise their jobs will continue which is a definite sigh of relief."

John Hulme, from Blurton, is one of the factory's longest serving employees. The 48-year-old, who is also blind, is a wire weaver and press worker and has been at the workshops for 31 years. He said: "When I heard someone else was coming in to run the factory, I thought 'yeah right' and did consider leaving. But I've had time to meet Ivan and he is a cracking guy, it is a pleasure to work with him. Morale at the factory had been non-existent; this is now not only good for the factory, but it will also raise morale and help us go on from strength to strength."

Pits'n'Pots - The Radical Press, 20th July 2009

Trailblazing Consultation For Disabled People

Local authorities are being encouraged to work with Jobcentre Plus offices to become 'trailblazers' to help shape the way services are delivered to disabled people.

Right to Control trailblazers is a shake-up of the way disabled people can use the funding they receive from the state and is part of the Government's radical welfare reforms.   The 'trailblazers' will test how this could work in practice.

Disabled people and their organisations are being asked to help shape this initiative – by taking part in the consultation they can influence how the Right to Control works.

The Right to Control, which is a major part of the Government's goal to achieve equality for disabled people by 2025, gives disabled people the power to decide who delivers their services and how they receive them.

The policy forms part of the Government's welfare reforms and is intended to 'enshrine in legislation' the principle that disabled people are the experts in their own lives and have the right to choice and control over their support.

Individuals and organisations can take part in the Right to Control consultation by visiting www.odi.gov.uk/right-to-control or calling 020 7449 5093.

Isle Of White - Island Pulse, 20th July 2009

Wednesday, July 22, 2009

Teare under fire over Disability Discrimination Act

HEALTH Minister Eddie Teare MHK came under fire in Tynwald for failing to implement a Disability Discrimination Act – three years after a Bill was passed in the Island and a decade after the UK brought in similar legislation.
Mr Teare said his department would be going out to tender to seek expert consultants to draft the detailed regulations.

'This is a significant undertaking and it has been agreed that this is a piece of work best undertaken by consultants who can bring experience from other jurisdictions. Without this, it is likely that the implementation process could take much longer and be less effective.'

But this did not impress Eddie Lowey MLC: 'Why do you need to employ consultants to ask people what their needs are? It's unnecessary expenditure. You have a lot of expert people. Your job is to implement the law of the Isle of Man.'
 
IOM Today, 15th July 2009

OAPs may face £20k care fees

As new PENSIONERS could be forced to pay up to £20,000 towards social care as part of new government proposals.

research shows the number of elderly people in Cumbria is set to rise by more than five per cent over the next eight years, the government has unveiled plans to overhaul the welfare system for older members of society.

Health Secretary Andy Burnham has put forward three options to replace the current system, which could see pensioners paying for their own care through personal insurance schemes or top-up fees. He ruled out a service entirely funded by the state but set out a series of options to pay for improved access to care.

In a Commons statement he said the current arrangements amounted to a "cruel lottery" which saw some pensioners forced to sell their homes in order to fund care.

He said half of all men and two-thirds of women over 65 would have a need for some form of care, costing a typical £35,000.

The Green Paper set out three options for sharing the cost of care between the state and the individual. One model would see the state fund either a third or a quarter of care costs, with the rest met by the individual.

A second option would involve taking out voluntary insurance, costing between £20,000 and £25,000 each. The third option set out would mean a comprehensive scheme with everyone paying into a state insurance fund at a cost of £17,000-£20,000.

Under all three plans, the poorest will have their full care package paid for by the state.

Mr Burnham said all three options could cost the state around the same as the current annual budget of £14.7 billion. Under current rules, anyone with savings of more than £23,500 or their own home is not entitled to help.

He said: "It is a real injustice that people who have worked all their life and paid taxes all their life, if they are unlucky enough to develop a condition like Alzheimer's in later life, they get no help to deal with the implications of that condition.

"The way we look after our older people defines what we are as a country and I believe we can do better than we are today."

But Margie Arts, secretary of Barrow and Furness Pensioners' Association, said pensioners should not have to pay extra when they had already contributed throughout their working lives.

Mrs Arts said: "We, having paid our National Insurance contributions or having had them credited because of family responsibilities, consider that we have paid for our care in our later years.

"The crashing burden of bills for what should be our right is something that just should not be borne. My personal view is that too many snouts have been lowered into the pot of money that should be providing services for us older people."

Margaret Burrow, honorary secretary of Barrow and District Disability Association, said: "I think it is absolutely dreadful. There is no incentive for people to buy their own homes because it will get taken off them in later life.

"People are not entitled to help if they have a home or more than £23,500, which is a ridiculous amount, it should be much higher than that. That definitely needs reviewing."

North-west Evening Mail, 17th July 2009

Dirty talk for blind people

An erotic audio site is marketing itself to blind and visually-impaired people. But have disabled people been excluded from the world of "adult" entertainment?
 
Lud Romano - who runs an internet communications business - was on holiday in South Africa with his partner when they discovered erotic audiobooks on iTunes.
 
They found the idea of a single voice reading aloud to be a little "empty".
 
"If you're going to get an erotic charge from that, you have to do a lot of work yourself," he says.
 
He decided there and then to commission a series of short radio dramas which would be made available from a website.
 
The original target audience for Clickforeplay was sexually confident, upwardly-mobile young women - the sort of people who felt comfortable about buying erotic fiction from a High Street bookshop or browsing the more female-friendly "adult" shops.
 
The 12-minute chunks of audio sold, but not in vast numbers.
 
"They [the plays] weren't costing anything, neither were they earning anything," said Mr Romano.
 
After a failed attempt at the "soft porn" market - "people wanted it a lot harder than we could ever achieve in the audio domain" - he looked at what was available for blind and partially-sighted people.
 
Erotic audiobooks
 
He was surprised to discover how under-served the market was in terms of adult material.
 
This is not to suggest that there is nothing "out there" for people who do not have access to standard print or video
 
For instance, the Royal National Institute for Blind People (RNIB) has erotic fiction in its audiobook library, as any mainstream library might have.
Pornographic actress with Playboy tattoo
Many people view mainstream pornography as exploitative
 
And general audiobook companies have sections dedicated to erotica which can run to 200 or so titles.
 
But one of the few dedicated erotic offerings for blind people that Mr Romano could find was a website containing an archive of audio recordings of American volunteers describing what they could see while watching hardcore pornography clips.
 
A brief listen to a couple of the audio files at the site is probably enough to convince most people to entertain themselves with something a little more improving. Deadpan, monotone descriptions of mainstream porn might even seem to the casual surfer like some sort of prank.
 
"It's just so bad, it's ridiculous," Mr Romano says.
 
His approach has been to get beyond what he describes as the "bored housewife meets young pool cleaner" type plot and to aim for something that will appeal to more sophisticated tastes.
 
He has a group of three writers who are simply told to "write naughty stories".
 
The plays are then recorded in a suite of rooms in north London "as live".
 
There are erotic audio sites but few are marketed at blind people
 
"It's not actors gathered around a microphone - they really act this, dynamically."
 
For those who worry about the exploitative nature of pornography, it might be reassuring to know that Mr Romano's actors do, of course, keep their clothes on.
 
Each drama has a setting that is "ripe for erotic development", according to Mr Romano.
 
One concerns the interaction between an artist, his female assistant and a nude female model.
 
Another is set in a laboratory in which two male scientists accidently discover a powerful aphrodisiac which their female boss insists upon trying. Unfortunately, she uses all of it before they can analyse it and produce another batch.
 
Each drama costs around £2,500 to produce.
 
Mr Romano's firm has signed a deal with a company which gives text-to-speech output from webpages and magnifies the text as well.
 
Society's reluctance
 
And while some people may disapprove of the enterprise as just another example of the internet being used to disseminate sexual content, it will be welcomed by those disability rights activists who believe the exclusion of disabled people from the sexual arena mirrors their marginalisation in other areas of life.
 
Writer and performer, Mat Fraser, says that making adult material available to disabled people is an intrinsic part of inclusion.
 
"It is the erotic that helps us to feel alive, real, included, and disabled people have so much to offer the world of the erotic and the adult," he said.
 
Society's reluctance to accept disabled people's sexuality is perhaps based on a deep-rooted but unspoken belief that they should not reproduce.
Sex shop
Many disabled people feel excluded from the world of 'adult' entertainment
 
This is a prejudice that is being challenged by activists, artists and writers, like Penny Pepper - a writer of erotic fiction that includes disabled characters.
 
"We are tired of being nannied and denied the rights to sexual expression that non-disabled people take for granted - so on that level, at least, we should fight for equal access to view and enjoy such material," she says.
 
Certainly, the RNIB makes sure that a wide range of tastes is catered for when choosing material for its Talking Book library.
 
The library's manager, Pat Beach, says the main problem is access to printed material per se - less than 5% of books published in the UK ever appear in large print, audio or Braille.
 
"We do not act as a censor - erotic fiction can be found on our shelves just as it is in a public library or a bookshop," he says.
 
Others believe that - because disabled people can experience difficulty in forming intimate relationships - accessing erotica and adult entertainment can provide an alternative outlet.
 
"As part of the wider campaign for barrier removal, it is really important also to remove barriers to erotica and sexual expression for disabled people," says disabled academic, Tom Shakespeare.
 
Mr Romano has already begun discussions with the RNIB, hoping to find an avenue to make more blind people aware of his product.
 
BBC, 16th July 2009

Thursday, July 16, 2009

Help us improve Scope's website

 
We're committed to continually improving the services and information we provide on our website and your feedback is vital in making this possible.

The purpose of this survey is to understand how you use the Scope website and what you think of it. We also want to learn a little bit more about how you use the internet so we can be sure we're reflecting your needs.

Our survey will take around 10 minutes of your time to complete but your comments will have a lasting impact and will shape the look and content of the Scope website in the future.

All questions are optional.

The survey is at http://www.surveymonkey.com/s.aspx?sm=76nNM6N5aVje1F_2bZWui62A_3d_3d

Alex White, Scope
 

People First Conference 27th July 2009


People First (Self-advocacy) are organising a conference to take place at City Hall in Central London on 27th July 2009.

The main purpose of the conference is to look at issues surrounding Health Inequality experienced by many people with Learning disabilities (LD). And planning Health Action strategies to tackle the problems faced by the LD community.

The conference is by invitation only, but if you would like to attend please contact Gary Bourlet, Campaigns Project Manager, campaigning@peoplefirstltd.com or go to their website for further contact details: www.peoplefirstltd.com

Time is now getting short for this event, so please contact Gary as soon as you can as refreshments will be provided!

David Cameron: The five lessons I learned as father of disabled child – and intend to put into practice


The Conservative leader reveals how his experiences have helped to shape his party's welfare policy

When it comes to the policy decisions they make, politicians are influenced in a number of ways. You take advice from experts, you learn from history and you listen to what people tell you in your own constituency and as you travel around the country.

But a lot of the time, you go with your instincts and your values – what you believe to be right and what your experience tells you works. It's because I had the benefit of a good education that I'm so passionate about reforming our schools so that every child gets the best start in life. It's because I have such great parents who have supported me throughout my life that I am committed to strengthening families.

The same is true with my approach to disability. My son Ivan was born with a profound disability, and my experience of looking after him has changed the way I see a lot of things – not just as a father, but as a politician, too. Samantha and I went on a steep learning curve. From that I learned five big lessons that have had a direct impact on what my party wants to do in government for those with disabilities and their families.

The first lesson I learned was the importance of early intervention and help. The day you find out your child has a disability you're not just deeply shocked, worried and upset – you're also incredibly confused.

It feels like you're on the beginning of a journey you never planned to take, without a map or a clue which direction to go in. That's one of the reasons why the next Conservative government is going to increase radically the number of health visitors. I'm not suggesting it's their job to diagnose disabilities, but for decades they've been in the home with parents, spotting warning signs early and offering sound advice. I know how crucial that early help is, which is why we need more of it.

The second lesson was that life for parents of disabled children is complicated enough without having to jump through hundreds of government hoops. After the initial shock of diagnosis you're plunged into a world of bureaucratic pain. Having your child assessed and getting the help you're entitled to means answering the same questions over and over again, being buried under snow drifts of forms, spending hours on hold in the phone queue.

I am determined to make life simpler for parents. One option we're looking at is inspired by something they're doing in Austria. There a crack team of medical experts – doctor, nurse, physio – act as a one-stop-shop to assess families and get them the help they need. That would have been such a help to us and families like us, so we're looking closely at the evidence and considering how we could do something similar here.

The third lesson is that we've got to make it easier for parents to get the right education for children with disabilities. So many parents get stuck on a merry-go-round of assessments, appeals and tribunals to get a statement of special needs and the extra help their child needs. There's a structural reason for that. The people that decide who gets specialist education – the local education authorities – are also the ones who pay for it. We're seriously looking at how we can resolve that conflict of interest so that parents don't have to enter into such a huge battle for special education.

Something else that many parents have to fight tooth and nail for is a place in special school. Following the gospel of inclusion, the Government has closed dozens of special schools down in the last decade. Inclusion is great for some, but it's often the case that putting a disabled child in a mainstream classroom is a square peg-round-hole situation. So we're going to stop the closure of special schools and give parents more information and greater choice.

The fourth lesson is that like all other carers, parents need a break. One of the biggest challenges when your child is severely disabled is finding time to do normal family stuff – playing in the park with your other children, doing the weekly shop, mum and dad going out for a meal.

Respite made a massive difference to my family. Knowing that Ivan was with people who knew him, who would love and look after him gave us a huge wave of relief. Backing respite means backing the voluntary sector, giving parents and carers greater choice over the respite that suits them and looking at all ways of making sure there's a clear entitlement to respite.

The fifth and final lesson I'm going to share is this. The very painful thing about disability – whether your own or your loved one's – is the feeling that the situation is out of your control. When the system that surrounds you is very top-down, very bureaucratic, very inhuman, that can only increase your feelings of helplessness. So a really big difference we can make is to put more power and control right into the hands of parents, carers or those with disabilities – through personal budgets and direct payments. That means that instead of giving a little bit of money from health, from education, from children's services, we say to people: "Here is the total budget for you or your child, you choose how it's broken down." And instead of insisting on separate, bureaucratic bank accounts for that money, it is right people should be paid directly if they choose. This is the support, trust and respect that parents of those with disabilities deserve.

Because we can never forget what an amazing job they do. Just consider what it would mean if the army of parents and carers in this country gave up, packed up, said they couldn't cope any more. The financial cost of looking after those children would be immense – and the emotional cost doesn't bear thinking about. We need to recognise that by staying strong and holding their families together, these parents are doing a great, unsung service to our society.

The Independent
, 16th July 2009

Wednesday, July 15, 2009

Accrington man set to lead national charity

AN Accrington man has been named as the next chairman of a national disability charity.

Ilyas Khan, 46, who grew up in the town, will take over as chairman of Leonard Cheshire Disability in September.

Mr Khan, a merchant banker by profession, only recently returned to the UK after living in Hong Kong since 1989, where he was involved in the establishment and support of a number of charities.

He has also been involved in the Stanhill Foundation, which helps young people achieve their sporting goals in East Lancashire.

Mr Khan said: "I am very honoured to be given this opportunity to contribute to the work of Leonard Cheshire Disability.

"The charity has built a strong reputation based on the quality of services it provides for disabled people, and for being a powerful and well- informed voice on their behalf.

"I grew up admiring Group Captain Leonard Cheshire, and it's fair to say he is one of my personal heroes. Getting a chance to join the Leonard Cheshire Disability team is therefore particularly pleasing."

Leonard Cheshire Disability supports more than 21,000 disabled people in the UK in achieving their aims in life through residential, training and other support services.

Lancashire Telegraph, 15th July 2009

Act now to end the Parkinson's postcode lottery

 

Treatment for Parkinson's disease is patchy across the UK - and I think this is disgraceful.

A new Parliamentary report has found there's a postcode lottery when it come to access to neurologists and specialist help to fight this cruel and debilitating illness.

Parkinson's slowly robs people of a normal life, as they struggle with tremors and mobility problems.

Symptoms usually appear after the age of 50 but in some cases it can hit earlier - US actor Michael J Fox was diagnosed at 35.

Although there is no known cure, drugs, surgery and physiotherapy can go a long way towards controlling symptoms, which is why access to the best care is so important.

The Parliamentary report also found that there was a lack of awareness of Parkinson's symptoms by GPs.

Now the Parkinson's Disease Society has launched a Fair Care campaign to improve treatment (see www.parkinsons.org.uk) but, in the meantime, I'm afraid it's up to patients and relatives to take a stand and insist on better treatment.

Fight for better care:

Not getting the help you or your loved one need? Here's what to do...

Become an expert:
Find out as much as you can about Parkinson's and the help available in your area, so you can push to get it. Visit www.parkinsons.org.uk and print off relevant pages from the website to take to your GP. Look up the latest treatments - whether it's surgery or new drugs - so you can ask your doctor if they're suitable.

Ask the right questions:
When you've gathered the facts, write a list of questions before seeing the doctor. For example: "Is there a specialist Parkinson's disease nurse in this area?" "Can we see a neurologist?" "Would surgery, physio or speech therapy help and are they available?" If you're told there's a long waiting list, ask how the process can be speeded up.

Use pester power:
Create a fuss if you don't think you're getting anywhere and keep on pestering. All too often, getting the best treatment needs persistence.
And if you're not happy with the help you're getting from your doctor, remember you can move to another practice without having to give a reason.

Don't be afraid to ask for help:
If you're caring for someone with Parkinson's, ask social services for an assessment to make sure you're getting all the help you're entitled to, including cover to give you much-needed respite.

The Mirror, 15th July 2009

Partnership working offers independent living options


A £120,000 investment has transformed a four bedroom house into independent living space for people with learning disabilities.

Gentoo and Sunderland City Council have worked together to adapt the detached property in the North Moor, creating three en suite bedrooms and staff office and sleepover space, where Adult Services will accommodate people who require support.

Ian Porter, Managing Director of Gentoo Sunderland, said: “This is a fantastic example of partnership working from key agencies in order to provide the best possible service to the people of Sunderland.

“We’re always looking at ways of adapting our services for customers with a wide variety of needs and it’s great that options like this one allow residents to maintain their own tenancy and gain more independence when, otherwise, they may not have been able to.”

Gentoo’s Care and Support team work closely with Sunderland City Council’s Learning Disabilities team on several similar initiatives. At present there are 42 people living in small Gentoo group homes with 24 hour support, and 25 properties where residents receive outreach support like the one at North Moor.

Quote from John Fisher, Head of Adult Services for Sunderland City Council, said: “We are delighted to receive yet another high quality house for people with learning disability from Gentoo. The partnership continues to provide timely solutions which are highly valued by the new tenants and their families.”

In 2008, Gentoo provided training on tenancy rights and responsibilities for over 20 members of the Learning Disability team, and further training is planned for later this month.

For further information on the work of the Learning Disabilities team, visit www.sunderland.gov.uk or call 0191 520 5555.

24Dash.com, 14th July 2009

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