Arthur Bell examines serious issues affecting Britain’s 8.6 million disabled
………
Six weeks before the new Millennium I entered Glasgow Royal Infirmary for a “serious but routine” heart bypass operation. “You’ll leave here in fourteen days a new man” was the mantra I kept hearing. Right up to my entrance into the operating theatre…
Six months later, an above-the-knee amputee, with ‘partial paraplegia’, I left – a new man! I found myself in a new world. A surgeon wrongly applied a clip to a new artery, and stopped the blood to my spine; a student nurse manning the so-called Intensive Care Unit who never looked at my blood pressure levels; and a major hospital’s heart unit without a vascular surgeon for 36 hours. These were the principal causes of my newfound wheelchair user status.
I recuperated in the sunshine of the Languedoc. My wife Susan and I had bought an ancient home, just two weeks before my entrance into Glasgow Royal. I battered away cathartically on a laptop. Over the following years I researched disability and met many others with serious problems. As well as assessing changes to my own lifestyle, studies of the range and scale of problems facing Britain’s disabled 8.6 million truly shocked me. Large numbers of dedicated people raise money and run charitable organizations. All of them battle, with limited help and funds, to do their best for those who depend on them. They all say that there is “so much more should be done”, and like all health matters, there are never-ending needs.
When General Elections approach these bodies all put on their campaigning hats, as I remember from my days as a candidate. Each constituency on average has around 13,500 people with different disabilities. So anyone in a marginal seat, who pays no attention to such lobbying, could be risking his or her chances of victory. Before the 2001 election, 18 major charities from such diverse interests as Mencap, the Royal National Institute for the Blind, to the Carers National Association, pooled their ideas and issues into one excellent ‘Disability Manifesto’. It should have been compulsory reading for each candidate. Then written tests held to see if they’d remember anything from its scores of sensible solutions. Alas a flood of literature swamps all candidates, and I suspect most would only give it a cursory look and murmur “how worthy”.
The noun ‘disablist’ is defined in the Oxford English Dictionary as “discriminating, or prejudiced against, disabled people”. In many ways we are just such a disablist society. This prejudice is much more of a sin of omission than of commission, or at least I hope it is. But the UK, and Scottish Governments and their agencies, the Opposition parties, and all councils need to re-examine attitudes. They must move much further if we are to complete that fulfilled society which the disabled require and deserve. And major rethinking is needed by commerce and industry too. So what are these problems, and how should we try to solve them?
Lateral Thinking
Disabled people should, as far as is possible, be able to enjoy the advantages of education, employment, housing, and leisure that the other fifty two million achieve. Opportunity to earn decent wages, to travel and relax, and to play a full role in society should be theirs by right. A sea change in attitudes is an imperative, and the two well-meaning Disability Discrimination Acts, although imperfect, are a start.
However, in matters of employment our police, armed forces, and fire services are exempt from the Acts and free to discriminate. This is against the European Union Treaty of Amsterdam, signed by the UK Government. Now before I’m accused of advocating blind coppers, and legless SAS men, just think what can be done. There are now plenty examples of wheelchair-users monitoring CCTV schemes, aiding the fight against crime. Often all it takes is a bit of lateral thinking, and adapting systems. Then to take on board some with disabilities, but who have other skills or experience that should be used. Just as a blind person might make an excellent career in telephone sales, so too a deaf keyboard operator shouldn’t be denied a job because of their impairment. Disabled craftsmen beautifully engineered one of my superb lightweight wheelchairs. One problem doesn’t mean no skills. Lots of opportunities could be made available through greater training links between government and employers.
The DWP, formerly Department of Employment, (now ‘Job Centre Plus’ - until its name is changed by the next government) believes a disabled person is SEVEN TIMES as likely to be unemployed as an able bodied person. When someone falls ill, loses sight or hearing, or is severely damaged in an accident, then sadly and wrongly too many employers terminate their jobs. Some interesting Employment Tribunal cases have begun to challenge, but such decisions are mainly due to a lack of understanding. Relatively minor alterations to working practices or equipment, could allow the person to continue usefully. Costs needn’t be high, but additional financial support for the employer, would save far more from the Social Security budget. The now disabled person would stay as a taxpayer, and wouldn’t need the same benefits.
Alas research indicates that our education system lets down badly the young disabled. Levels of illiteracy and innumeracy are much higher with the physically disabled. Very many, no matter the level of their intelligence, still don’t have the same higher and further education opportunities. Thus employment, if they get any, can often be at a much lower skill level than that disabled person might be capable of achieving… if only they were to receive proper training and skills development. One of my own former employees, who had developed severe epilepsy after a car smash, then spent TEN YEARS writing to employers looking for a job. He didn’t have the qualifications he’d have had if he’d gone up to University. He’d been accepted before the accident. Through good support from ‘Capability Scotland’, we were able to find a reasonable job for this interesting and cultured man.
Government schemes such as “New Deal” were meant to help disabled get better access to work. However, my experience would make any strong man cry. I received a letter from the Government asking me if I would like training, to enable me to return to work. Now my condition would not allow me to take up a fulltime post, but I would have liked proper training in computing skills, in graphics for lecturing, and in internet access and web creation. This would help me in research for writing, publishing, and speaking engagements. I phoned the local office phone listed, the very morning on which I received their training offer. No one knew anything about the program. I was called back later from a different office. They told me the New Deal program to which their recent letter referred, was being withdrawn within a week.
Then a nice lady (and they are always very nice) phoned me. She’d seen an advertisement for similar training in her copy of Glasgow’s ‘Evening Times’. Alas I need training somewhere closer to home. If the government really wanted to improve my skills, why should I have to pay several hundred pounds out of a dramatically slashed income, and travel 100 miles daily to get it? If this was the standard applied nationally, I’ve little hope that many new jobs were found for the disabled. But somewhere, someone would be pleased that the letters had been issued. Money from the budget had been spent, and thus the government was ‘doing its job’. Nothing changes.
Access and Opportunity
The real job that should be done includes making all educational and training facilities accessible, so skills and learning opportunities are no longer denied disabled people. In terms too of access, a review should look into how disabled persons can reach places of employment, when public transport is poor. Have you ever tried getting on to a “wheelchair friendly” double-decker bus during a city rush hour to get to work? My advice is just don’t bother. At the same time, a crash program should be introduced to get up to scratch literacy and numeracy standards, for those whose previous education is lacking.
I spent thirty years campaigning politically from the small business standpoint. My answer to complaints about costs of changing premises of smaller companies to give access to disabled employees is this: You will find the high level of dedication to your business by any such disabled persons will make minor changes to your business access well worthwhile.
To make this work, employers have to have decent long-term funding, enabling them to do the job training. We found in our own business employee backup and training excellent, as were the Department’s dedicated Disablement Employment Advisers. This was contracted out to the charity ‘Capability Scotland’ and is now in the hands of ‘Enable Services (Scotland)’. The Job Introductory Scheme (JIS) currently allows employers a grant of £750 for training and, perhaps, a part-payment six-week employment subsidy. That may not be enough to encourage the full number of employers who should be involved. That’s if the Government’s wish to reduce numbers on benefits is to work.
I asked Ann Begg, Aberdeen South’s wheelchair-seated MP for her personal “wish list” on improving life for disabled people. She wrote:
“I think that the dignity of work and having a purpose in life is absolutely crucial in improving the quality of life. I would like to see more disabled people, not just being active in society in general, but being active in the workplace.”
To achieve her aim we all, employers, individuals, Government and its many arms, have a long road to travel…in as short a time as possible.
On employment there is a need to abolish the discrimination in social security benefit payments, which penalizes those unable to work more than 16 hours a week. Often this short working week is all someone returning from serious injury or illness can cope with. Yet his or her ‘Disabled Persons Tax Credit’ is affected adversely, and this rule needs to be abolished. Private sector employers work at a different pace from the government offices, so a new dynamic to assist disabled get jobs is needed. No small business is prepared to wait weeks or months for simple decisions to be taken. Nor can they afford to take risks, particularly in the new 2008 economic climate.
Acting as UK’s representatives on a pan-European policy body, the excellent Leonard Cheshire International organization drafted a program with the unwieldy title of EDAMAT. This is a format to ensure policy makers in education, health, housing and transport effectively meet the rights of disabled people. Frankly it’s only at the “Sir Humphrey” level that we’ll get major changes in policy implemented.
Training trials should be brought in to satisfy businesses that there is no risk involved. To take significant numbers of disabled off the unemployment register requires a particularly determined senior cabinet minister, with the drive and resolution of say, Paddy Ashdown, Michael Heseltine or David Blunkett. Someone who will bulldoze the clutter of schemes of which no one (except the Department) has heard; to simplify the system, to demand and get the required budgets from the Treasury; and with a massive willpower and dedication. Is there such a person in Westminster? Tinkering will achieve little. It is a long time since the profoundly deaf MP Jack Ashley, now a life peer, was Minister for the Disabled. His pioneering efforts and publicity skills need to be emulated. If Jacques Chirac thought matters of disability important enough to list in his top three ambitions, isn’t it time we had such wishes in the UK. Both Gordon Brown and David Cameron have children with disabilities…so… “Time gentlemen, please”
Physically and Financially Broke
A multitude of the disabled live in poverty, or on its threshold. 360,000 disabled children too are amongst the poorest in society. What a disgrace! On a low income, the disabled person’s needs are often higher than the able bodied, and generate extra costs all year round. Equipment is very expensive; laundry, heat, special clothing, personal care, and often a different diet, all add costs. Relying on social security for income hardly leads to a comfortable life, despite what the fundamentalists writing in tabloids say. The excellent DLA – “Disability Living Allowance” helps, but disabled pensioners only get the lower rated “Attendance Allowance”, meaning less, despite the fact that needs increase with old age.
If you’re under 60 and disabled, although you may be housebound and requiring all day heating in winter (in parts of Scotland that’s from 1st. October to mid-May) you don’t qualify for the Single person 60+ £250 fuel payment. This anomaly should be immediately removed, and older people with disabilities should be allowed to claim the DLA. It is estimated that almost 60% of DLA budget is not taken up by people whose disability qualifies them, so they’re therefore poorer than they need be. Regular and effective targeting through medical practices, hospitals, churches, and social work departments, should be used to try and get this budgeted help to all the qualifying needy. With prices rising, and the “Credit Crunch”, winter 2009 is bleak for many British citizens.
Finally on benefits: an under 60 years old disabled person with savings above a £3,000 threshold, may lose some of their means-tested benefit. It is obvious to a blind man with a wooden leg that the genius who came up with that figure is not disabled. They’ve never bought an electric wheelchair, or installed a special bath or stair lift. £3,000 doesn’t go very far. My wheelchairs – “Chariots of Fire ll and lll”, without any ‘engines’ except my chest and arm muscles, cost over £2400 each. The state failed to give me a safe means of moving around. That insulting £3,000 benefits threshold should be raised to £10-12,000, or about the average cost of a small car. On the subject of cars, eight years ago when I called about a loan towards car purchase from the official “Motability” scheme, I was quoted an interest rate just over 20%. This was at a time when rates were lower than for over 30 years. However others assure me it does work well.
In 1995 The Institute of Actuaries studied the financing of long-term care. They found that in the UK we have six million people who care, and have some responsibility, for a disabled friend or family member. The support they give was valued at an astonishing £34 BILLION each year. Today that figure is well over £40 Bill! Certainly no politician could claim that the state is the principle care provider in our society. Yet from my own experience I have seen how tied my wife is, how stressful, depressing, and tiring, caring can be. It lasts for life for a spouse, and there are no shifts or weekends off: “In sickness and in health, until death us do part.” And I’m not a child with autism or cerebral palsy, or (yet?) an incontinent octogenarian with Alzheimer’s. The carers often lose income from not being able to work full time themselves. They cannot easily build up a personal pension fund for their own old age, although they can now get state support of access to the Class 1 National Insurance. The ‘Carers Allowance’ they can claim is worth about 10% of average wage levels. I believe the Government is slowly trying to improve this awful situation.
The 1999 Employment Relations Act pointed out that of people in work, 13% have also to act as carers for a family member or friend. Somehow we need to make their lives easier and ensure they can stay in their work as long as is reasonably possible. They need employers who understand that such carers may have to take additional time off (unpaid), when an emergency happens back home. And their income needs protected from serious monetary hardship when they are simultaneously employed, and saving the state ‘loadsamoney’ as they help others.
Home Sweet Home
While income is one fundamental, a roof over the head is another essential. Our personal experiences of trying to build a new house suitable for my needs would fill a book. Suffice it to say that one well-heeled local objector went before the council planning committee and said that he didn’t care that I was wheelchair-user as: “He’s probably playing ‘the sympathy- card’ for all its worth”. Nice one. Thank God I’m not as cerebrally challenged as that, but I’m sure most disabled people have many similar tales of public ignorance.
Many buildings go up without proper reference to, or understanding of, the DDA. It’s not unfair to say that planners often don’t consider, or understand how important are the Disability Discrimination Acts. When our first grandson Ovie was born I couldn’t get into my daughter’s modern Housing Association apartment to see him. Wheelchair access was impossible because of ignorant design. Worryingly, barriers exist which deny permission to change and alter existing buildings, despite obvious need. All evidence shows a serious shortage of accessible housing. I know to my cost, unsuitable housing may damage health further and impedes mobility. An inadequate means-tested £20,000 limit is applied on the ‘Disabled Facilities Grant’. This can prevent someone moving closer to relatives who could care, or perhaps take up a job offer. Does such a sum do much in house moving or major adaptation in London and S. E. England?
And of course in many cases nobody explains to disabled people what sort of assistance may be available to them. Most schemes have been written up, in leaflets with limited distribution, by civil servants. Then departmental lawyers have made them more unreadable. Advertising copywriters, whose skills lie in explaining ideas in easily understood words, should write all such leaflets, not civil servants. The result is that few people actually understand many leaflets, even if they miraculously get into their hands. The Benefits Agency I understand, have large print, Braille or audiotape available. But back to housing…
A statutory obligation in new or adapting buildings, needs to be introduced. At ground floor, at the very least, they MUST BE made accessible for all disabled. All building plans should be examined by a wheelchair user to see they are compatible with modern access needs. Simple things like door widths can make a huge difference. Exceptions should only be where historic buildings physically cannot be changed without damage, or where economic viability is proven to be seriously threatened. When someone applies to have a house adapted for disabled usage, a non means-tested grant should be available to all. The local authority MAY award a grant of up to 75%…IF they have the funds available, and if the applicant knows about it, and if they can work their way through the Kafkaesque labyrinth of forms.
Similarly if a disabled person is required to make a major repair, there should be official assistance. In a group of flats for instance, a roof repair cost of £8-12,000 is not uncommon for each occupant. Someone on Disability Living Allowance has neither the hope of paying up such an amount from capital, nor of being able to raise such a sum through borrowing. VAT also is in need of adaptation, so that it is not applicable to essential building changes for a disabled person. I understand there can be “certain exemptions” from VAT for disabled persons, but it is not standard. Removal to another home may not be an option except under the most stressful of situations. Building Control regulations need to be relaxed and improved to ensure that the disabled can quickly fit where necessary new toilet, shower, ramp or hoist requirements. Architectural advice, if necessary, should be readily available. This will entail all architects being properly tutored in accessibility, so that all they design is suitable for everyone. All architecture students (and their tutors) should be obliged to spend several days exploring their local urban environment in wheelchairs. Things would change.
And More Towards… a Fulfilled Society
When schemes of town centre pedestrianisation are being planned, the needs of access, parking, and mobility of disabled citizens should be a duty on the authority involved. Parking spaces for disability blue badge holders should be made outside all pharmacies. As for the massive Disablist abuse by punters – all ages, classes and incomes – of “reserved parking” it is horrific. One friend waited 15 minutes at a supermarket for a space until a well-heeled lady moved her BMW. She shouted in front of his seriously disabled wife: “You shouldn’t be bringing fxxxing cripples to shop here at 6pm anyway!” Maybe she was a member of a Disablist Motorist League?
And perhaps all Road engineers should be obliged to mount existing pavements – in wheelchairs – before they are allowed to present any new street plans.
Public transport needs to be brought fully within the scope of the DDA. Did you know that all coaches have to be accessible… by January 2020? Now that’s obviously a priority date invented by a bureaucrat who has never had a mobility problem himself. Capability Scotland points out that there is free bus travel for the over-60s and disabled people across the country. However many entitled to this service cannot get it as bus services may not be accessible, are sparse, or non-existent. Thus many disabled have to use expensive services like ‘Dial-A-Ride’ or ‘Handicabs’ for which they have to pay… although Government says they are entitled to free travel. When I took an Edinburgh/ London train and needed relief after a pleasant lunch, my daughter Gillian went off to find the “disabled” toilet. She returned: “Bad news Dad. They say it’s on the next train”. We’d just left York so I’ll just leave the rest to your imagination.
Can you get into your local polling station to vote? Only some 6% were fully accessible in 1997 to wheelchairs, yet 92% were in public buildings. My own South Lanarkshire Council, to its credit, had all polling stations accessible by the 2001 election. One wonders how many others bothered? But my wheelchair tyre was punctured on a sharp edge just inside the polling station. Like Queen Victoria I was not amused.
Despite the fact that people with mental problems are tragically far too often the victims of crime, frequent reports show the criminal justice system doesn’t take them seriously. As they can be considered ‘unreliable’ as witnesses, proceedings are often not taken against alleged criminals. Decisions by the English Crown Prosecution Service or the Scottish Procurator Fiscal to drop a case on these grounds should NOT be allowed. The prosecutor should interview such a witness, and tried to find some way of helping them give evidence effectively. In Glasgow I understand there is now an advocacy program, which is rapidly expanding to cover all vulnerable people.
The obscene costs of the legal system discriminate against any disabled person who has had illegal discrimination elsewhere, perhaps in provision of goods and services. I say this as one who had to drop a strong case as the costs had gone through the roof. My wife and I were the victims of an IT company’s software failings, and had to stop before it cost us everything. How impossible is the legal system for someone depending on disability benefit payments? Even Oliver Cromwell despaired and gave up trying to reform the English legal system. He discovered it was “there for the benefit of the lawyers”. Not a lot has changed since 1658.
Now how many times does a disabled person have to put up with being patronized? Despite the excellence of the – now withdrawn – Radio 4 program ‘Does He Take Sugar?’ this is still prevalent. I’m sure even the most culpable don’t know they’re doing it. We loathe it, just as we get upset when people talk over our heads as if we don’t exist. And if they talk in a ‘politically correct’ way that also annoys. At a meeting recently a young man accused me of being politically incorrect for saying that those in wheelchairs “can have fun without legs.” What was incorrect? Were they not supposed to have fun? Or was it wrong to suggest that some sportsmen are legless? My disabled friends hate deliberately offensive lines like “get that cripple out of here”, but make up jokes all the time at their own expense. That’s often their only way to cope with their disability.
Finally lets get rid of the discrimination within the NHS. Now that’s almost as big a problem as trying to get a little equity from the law. Here are some glaring faults as far as disability is concerned:
- The system of cervical screening is obviously unbalanced… 85% of women overall are screened for cancer. But only 8% of women with learning difficulties were given this important life-saving examination service in 2002. Was there a hidden eugenics program operating in the UK?
- People with long-term chronic conditions are sometimes penalized by the system of prescription charge exemptions. This needs to be made equitable countrywide.
- The NHS itself needs to examine its recruitment policies. The percentage of disabled employed within the Service is disgracefully low.
- Why are digital hearing aids so grossly overpriced in the UK private sector, yet they’re widely available in some other European countries for one third of our cost? Should such technology not be standard now in the NHS? I believe they have a £7 million budget for digital hearing aids. Why did it take one lovely centenarian I knew eighteen (yes18!) weeks to get a simple repair to her primitive hearing aid? The deaf are amongst the most isolated in our society, and reform should come to their rescue. One simple start would be grant aiding by vouchers towards the cost of modern digital aids nationwide, not by postcode.
- Similarly isolated are sufferers from mental illnesses such as schizophrenia. According to the National Schizophrenia Fellowship 33% of patients with serious mental health problems get turned away from appropriate services. Just think of the tragic consequences possible for them, their families, and others. Frequently this leads to compulsory hospitalization for such patients, or worse…it’s off to an overcrowded jail!
- Why should a patient from one part of the country have to put up with a faulty, old fashioned, heavy and uncomfortable wheelchair? In another region they would receive a modern, comfortable, easily transported Chariot. My own NHS chair was as supplied to survivors of the Somme. A UK-wide scheme of vouchers would enable people to avoid the atrocious quality of many NHS supplied chairs.
- When someone is newly diagnosed or discharged from hospital with a recently acquired disability, they probably need help more than at any other time in their life. Employment, rehabilitation, pain control, social services, housing and education are areas where they may need help, but they or their families frequently don’t know where to turn. Occupational Therapists and social workers may try their best, but there is no team of multi-discipline advisors who can tell the patient how to access all relevant agencies. Like Robinson Crusoe dumped on a desert island, they have to pray they find a ‘Man Friday’. My friend from hospital Douglas was dumped, finding nothing like the help he needed. That failure led to him losing his life.
Tragically that word “dumped” is my perception of many of Britain’s disabled. They are full citizens of this allegedly civilized country, yet too often they are not full members of the community. The U.N. Universal Declaration of Human Rights “Reaffirms the universality, indivisibility, interdependence and interrelatedness of all human rights and fundamental freedoms, and the need for persons with disabilities to be guaranteed their full enjoyment without discrimination.”
Britain’s “Disablist Society” needs to be transformed into a “Fulfilled Society”. This surely should be a serious challenge for the early 21st Century.
Recent Comments