The smiling child you see in this photograph is Pollyanna, my eight-year-old niece. As well as her lovely smile, you will also notice that Pollyanna has only one “full” leg. The bottom of her right leg was severed a few weeks after her second birthday, after she was involved in a collision with a London bus. Elizabeth, her grandmother and my mother, was killed by the same bus.
In the words of the Equality Act 2010, you are disabled if you have a “physical or mental impairment that has a substantial or long-term negative effect on your ability to do normal daily activities”. Not that we need the wording of the Equality Act to explain or justify Pollyanna’s disability; the very moment she was struck by the bus, her normal healthy body changed. Regardless of government help, her right leg stops at the end of her stump, just below her knee.
So how might these stipulated “normal daily activities” be defined? Walking? Yes. Getting in and out of a bath? Yes. Getting in and out of the car? Yes. Playing hide-and-seek with your friends? If you’re an eight-year-old girl, yes. Does the fact that she has one full leg impact on her ability to do these things as easily as people with two legs? Again – yes.
Pollyanna has a prosthetic leg paid for by the bus company that did the damage. That leg is as important to her as her wheelchair and crutches, as having a bathroom next to her bedroom, and as the understanding of her schoolteachers and her friends and family, who are ready to lift and help her get around.
Until recently, Pollyanna’s mother Sarah received higher-rate Disability Living Allowance, which provided valuable support in the form of a Blue Badge for the family car, and a mobility vehicle big enough to transport a wheelchair. Sarah also received a carer’s allowance, linked to the Disability Living Allowance, in recognition that Sarah takes Pollyanna to regular hospital appointments, is responsible for the prosthetic leg, and is a support to her daughter when problems (and there are several) arise. Sarah couldn’t go to work even if she wanted to.
Yet although the state acknowledges Pollyanna’s disability, following a recent review of this support for Pollyanna, the decision was taken to remove it from higher-rate DLA to no rate. To nothing. Sarah was initially informed that her Blue Badge was now invalid, her car would shortly be taken away, and her carer’s allowance – together worth a total of £166.60 a week – would disappear, too.
In March, Sarah received a letter from the Department of Work and Pensions as part of the Government’s ongoing tightening-up of assessments for DLA. It said that in order to qualify for DLA, “you have to have had both legs amputated above the ankle or through the ankle or you were born without legs or feet”.
This is gruelling reading for anybody. For a start, it doesn’t make sense: an ankle is not a leg, it is part of a leg; if something dreadful happens to your ankle, you lose a foot, not a leg. But the letter also categorically says you have to be a double amputee to deserve the higher rate of DLA; having lost only one leg is not sufficient to qualify. This is harsh, to say the least, but to explain such an important decision with a badly written sentence is unforgivable.
Initially, Sarah thought the Department of Work and Pensions must have made a mistake. When she rang, she was told that Pollyanna’s medical notes said she had “a healthy stump”, and that the decision to remove the allowance was based on information about how she was managing. But just because Pollyanna has an artificial leg, it does not mean this prosthesis is any sort of panacea. The decision to remove DLA takes no account of the fact that Pollyanna is a growing child and has many difficulties because of her amputation: a large and painful bunion on her left foot; abnormal pressures on her back, hips and left thigh which often ache; and many days when she cannot wear her leg because her stump is sore, usually when she is “growing out” of her prosthesis.
At best, the decision is clumsy and thoughtless, one taken not by anyone medically qualified, but by someone in the Department of Work and Pensions. A spokesman said that the DLA was awarded according to someone’s needs, and so might be subject to change; and that the higher rate is paid to help people who are “unable to walk or virtually unable to walk”. Sarah must now go through the arduous, upsetting appeals process. She was never consulted about her daughter’s needs.
Peter Oborne wrote in The Daily Telegraph recently that Iain Duncan Smith, the Secretary of State for Work and Pensions, “has no argument with the magnificent vision adumbrated by William Beveridge in his 1942 report setting out the principles underlying the Welfare State… and he accepts that a civilised society must always extend a helping hand to those who, often through no fault of their own, fall on hard times or who are genuinely in need”. I don’t doubt Mr Duncan Smith’s intentions – but in Pollyanna’s case, something has gone terribly, terribly wrong.
And there is no reason to think hers is an isolated case. Have individuals been forgotten, in the rush, perhaps, to reduce the welfare bill? Has Pollyanna been “lumped in” with a group of people who have only one leg, all of whom do not receive DLA because they don’t suffer from two amputations? How many people – perhaps hundreds, perhaps thousands – are suddenly not in receipt of valuable financial support they rightly need and deserve, and to which they had become accustomed, and which made their already difficult lives easier, with such things as Blue Badges and permission to use disabled loos?
Sarah has begun her appeal – and there are glimmers of hope. Sarah received a replacement Blue Badge late last week, almost two months after her last one expired.
I am appealing on behalf of many disabled people who may have been treated in a similar way. While I appreciate the importance of protecting the state’s finances, please, Mr Duncan Smith, Mr Osborne and Mr Cameron, do not lose sight of individuals when so doing. Collective decision-making with regard to disability does not work. It is a short cut that should never have been taken.
Victoria Bacon is the wife of Richard Bacon, Conservative MP for South Norfolk, and co-founder of a charity, Elizabeth’s Legacy of Hope (elizabethslegacyofhope.org)
Case study: ‘I don’t know what I would do if I lost it’
Andy Gardiner, 36, who is married with one 16-year-old son, lives in Fritwell, Oxfordshire. Gardiner lost a leg 10 years ago after falling outside the greengrocers he owned in Northumberland and fracturing it in 13 places. He suffers from chronic regional pain syndrome, whereby he still experiences searing agony in the leg he lost. As a result, he must take strong painkillers, which he says make him unemployable. Gardiner – who was so traumatised by his accident that he contemplated suicide – was on the British shooting team, but left before the London 2012 Olympics to pursue a career as the world’s first professional amputee golfer, something he “doesn’t receive a penny” from.
“I had a reassessment form from the Government through about a month ago,” says Gardiner, whose wife Kerry is his full-time carer. “I filled it in and I haven’t heard anything since. I’ve got no idea what’s going to happen. I receive £180-a-month Disability Living Allowance and I don’t know what would happen if that went. There is no employer in the world who is going to give a job to somebody who has to take the cocktail of drugs that I do.”
Case study: ‘People are not being told what’s going on’
Robert Wallace, 30, has cerebral palsy. After attending a specialist school, he graduated from Treloars Physically Disabled College in Hampshire with a distinction in IT. Wallace, who also has problems with visual impairment, says he was forced to give up his job as a web designer when the state funding of an assistant who helped him with reading was removed. After paying the assistant more than half of his own wage for a year, he could no longer afford to work. Wallace lives at the family home in Stevenage, with his father Rob (a former graphic designer) and stepmother Kath acting as full-time carers. He is also supported by Leonard Cheshire Disability.
“I currently receive £250 a month in Disability Living Allowance, and I haven’t a clue when I am being reassessed,” he says. “That’s the whole point. It really does mean people are not being told what is going on. There are people that will be seriously affected by this. If I lost any of my DLA, it would have a huge impact. I’m 30 years old. I want to be independent.”
By Victoria Bacon