Denying disability

In August this year, the High Court in London awarded £6.6 million pounds to Leo Whiten, a seven-year-old boy who had suffered brain damage as a result of medical negligence at the time of his birth. Leo now has cerebral palsy, limited mobility, cannot stand or walk unaided, and has no functional speech. His mother noted that: “He will never be able to live independently, will not be capable of any form of employment and will never have the necessary mental capacity to be able to manage his own affairs.”

Awards of this kind are usually divided between annual payments and a lump sum. The annual payments are to meet the additional costs required to live with a disability and the resulting loss of earnings, while the lump sum (in this case £2.7 million) is to meet costs already incurred and to compensate for the distress caused by the injury. Estimates of additional costs take into account life expectancy and the level of social care required, which in Leo’s case is needed for 24-hour/day. The additional healthcare costs that might be needed by Leo are of course met by the NHS, and Leo will also be eligible for statutory disability benefits, which are currently £73.60/week for the care component and £51.40/week for the mobility component at the highest rates.

Very few people who are disabled from birth receive compensation payments to cover their loss of earnings and their need for social care. Instead, they depend on services provided by local authorities. Funding for these has increasingly been devolved to individual disabled people, ostensibly to increase their personal control over the services they receive. But these ‘individual budgets’ are not an entitlement like the disability benefits - they are paid purely at the discretion of local authorities. As central government grants have been reduced, local authorities have responded by tightening eligibility criteria for social care and reducing levels of payments. Public funds have as a result met an ever-smaller proportion of the true costs of social care and amount to very much less for people with severe disabilities than the sums paid to Leo Whiten.

Leo, like other people with severe disabilities, will not pay personally for using healthcare or for attending school, which means that these costs fall on the public purse. However, many people with severe disabilities from birth require more intensive healthcare interventions than the rest of the population, including the use of expensive specialist services. Special education for people with severe disabilities is also more expensive than that provided in ordinary primary and high schools. This all means that the lifetime cost of severe disability (both for the public purse and for families) amounts to several million pounds per person.

Faced by these circumstances, both families and governments are tempted to resort to miracle cures, and there are many persuasive charlatans able to supply them. Some families have spent large sums of money sending their child to Florida in the belief that swimming with a particular set of dolphins can ameliorate Autism. Others have paid to be trained in a technique which involves constant manipulation of a child’s arms and legs, all of which is supposed to train his or her brain to overcome Cerebral Palsy. Since this level of intervention can not be sustained, parents come to blame themselves for their child’s continued disability.

For governments, charlatanry takes a different form: there is a sustained denial of the impact of severe disability, coupled with a pollyannaish belief that people with severe disabilities from birth can, with a bit of help, attend ordinary schools (and hence avoid the cost of special education), find an ordinary job in the open labour market (and hence be ineligible for social security), and use ordinary (and cheaper) non-specialist health services. Policies of this kind have a particular power because they can be presented as liberating, and can be contrasted with the sad history of the stigmatisation and de facto imprisonment of people with severe disabilities. But this is the radicalism of fools. It means that disabled people are less likely to get the services the need, and more likely to be incarcerated. The Department of Health has run down its inpatient care for people with intellectual disability who have mental and/or behavioural disorders. This has been promoted and legitimised by its now-defunct Valuing People Support Team. But mental disorders and behavioural disorders have not been magicked away, and there has been a compensating expansion in residential and inpatient care by the private sector. This can take the form of ‘downwards substitution’, in which people who need skilled nursing care get cheaper residential care, provided by untrained and over-stretched staff. The Winterbourne View case (exposed by television rather than the formal ‘quality assurance’ bodies) shows the results.

Of course, some people have benefited from these changes. They include the former head of the Valuing People Support Team, who has now moved to a senior position in the main private company providing residential care in England.

The Rudeness of Strangers

I spent much of the early part of my life being unnecessarily rude to others. Gradually, I learnt more social skills, and acquired a liking for easy conviviality rather than blunt assertion. But there have been times when I have been accused of  rudeness without just cause. Here are three examples:

The first was at the University of Birmingham, when I had an appointment in one of its academic buildings which had been converted from a large house. The oaken front door was solid, heavy, without any window, and stiff. I pushed with no result. After a second, firmer push, the door sprung open and hit a woman standing just behind the door who was in conversation with two other people. I apologised to the woman. “How rude”, she said to me, angrily.

The second was in a street near Covent Garden in London. Four elegant young women were walking very slowly side-by-side with linked arms, completely blocking the pavement. I was in a rush to catch a tube, and politely asked “Excuse me”. “How rude”, one of them said.  The third case was at a cash machine in Worcester. A young woman was on the mobile phone while entering the codes to check the balance of her account and to withdraw funds. In between each digit she entered, there would be a protracted conversation on the phone. Distracted by the conversation, she entered digits incorrectly and had to re-insert the card several times. After five minutes of this, I asked politely if the rest of us in the queue could have a go at the machine. Not speaking to me but instead to her mobile phone, she said “There’s a man here who’s been really rude to me”, with indignation.

The last two cases are similar. They involve people who behave selfishly, and who then express indignation that they must pay attention to the needs and wishes of others. This is perhaps the true character of everyday egoism. Egoists do not deliberately seek to crush or ignore others - they instead see others as having no identities at all, or at the very least having only minimal identities compared with the shining light of their own person. When the needs of others unexpectedly intrude, they experience a sense that their own world has been invaded and react with some anger. This can even lead to minor insults or setbacks from others becoming the basis for a lifelong antagonism. Like Miss Havisham, clad forever in her wedding dress, the original insult becomes an immovable part of their life and character.

Beyond everyday egoism, there is the more pathological variety. The previously-successful Shropshire businessman who became bankrupt and then suicidally depressed, reacted by killing his entire family and his pet dogs, and then burning all his possessions. In his eyes, his family, his house and his expensive cars were merely extensions of his own ego, and therefore logically had to be destroyed alongside himself. In other cases, the pathological egoist will decide that he or she has a special mission, which may involve wiping out opponents or bringing some religious truth to the unenlightened. These two missions have often been combined, making governments with religious leaders some of the cruellest in history.

What about the first example of an undeserved accusation of rudeness - the woman hit by the stiff door? All sorts of psychological speculation are possible, but it may just have been ordinary human stupidity.   

Is higher education a rip-off?

Students in most English universities will next year pay £9000/year for their three-year degree course. Is this £27,000 value for money? One way of determining this (popular with governments) is to promote higher education as a personal investment, with a financial return to the student in the form of increased future earnings. However, there is little reliable data on which to base such a calculation. Information about earnings after university comes from data collected before the current recession and at a time when a much smaller proportion of school-leavers attained a degree. The investment model is in any case of dubious value because higher education should be much more than just a means to the end of accumulating ever more possessions.

A more appropriate way of assessing value for money is to calculate how much a good  university education should cost to deliver, and whether this corresponds to what students will be charged in fees. Anybody who has worked in a university will suspect that they operate at less than optimal efficiency. Expensive lecture theatres and teaching laboratories are used for 26 or so weeks/year. There is an expectation in many universities that all academic staff will do research as well as teaching, thereby avoiding the gains that accrue through specialisation. Courses may take years to set up, and universities commonly offer many degree programmes with small numbers of students.

So let’s imagine a university that operates more efficiently but still delivers a high quality of education. In the first place, it will aim to make better use of its capital and human resources by teaching three 15-week semesters/year, instead of the usual two. To calculate how much this will cost, we can simplify things by omitting STEM (science , technology, engineering and medicine) courses because they incur high equipment costs for which universities are compensated by a central government grant. How much teaching should students receive? Over the last few years, universities have reduced teaching hours and increased the number of students in small group teaching (some have 20 or so per ‘small group’). There is also a trend to offload undergraduate teaching to postgraduate students. These trends have their apologists, who say that the quality of the teaching is more important than contact hours. But this is rather like parents who pursue their own careers rather than spend time with their children, and then rationalise this by saying the hour or so they do spend is ‘quality time’.

My imaginary university will do none of those things: all students will receive 20 hours face-to-face lectures/week, plus one hour/week of small group tutorials in groups of ten students, all led by academic staff. How many academic man-hours would this involve? I estimate that each one-hour lecture needs four hours to prepare, but only one hour to revise for the next time it is given, and that each lecture needs a thorough revision once every five years. This gives a mean of 1.6 man-hours of preparation for each hour of lecturing. Small groups require less preparatory work - about one hour for a new tutorial and half an hour to revise. This gives a mean of 0.6 man-hours preparation for each set of tutorials. My imaginary university operates on the Melbourne model, with a small number of large degree programmes - let’s say each has an annual intake of 100 students. The 15th week of each semester will be allocated for exams. No course work will be marked (except as a formative assessment) because of the large and growing problem of agencies which write essays, dissertations and even theses for a fee. Student examinations will each take one hour to mark for each semester, requiring 300 hours for the programme each year.

Based on this data, we can calculate the academic man-hours to deliver each programme as 3156/year. If we assume that each academic works 30h/week on teaching (including preparation time) for 45 weeks/year, this indicates a requirement for 2.3 academics for each year’s intake of 100 students. This would mean a teaching team of 4.6 academic staff for the course as a whole. Let’s assume that the mean staff costs/academic are £50,000/year, resulting in £116,888 cost/year. Academic staff costs are about 36% of total university costs, which would produce a cost of £324,689/100 students, equivalent to fees of £3,247/year and £6,494 for the full degree course.

It would be possible to reduce these fees even lower if some efficiencies could be attained in university administration, which has expanded in recent years because of the spread of quality assurance paperwork and the increasing complexity of the admission process. Universities also have a tendency to build expensive monumental buildings, sports centres, art galleries, conference centres, performance venues and so on. My imaginary university would concentrate on academic matters rather than entertainment (which is available in plenty in the areas in which most students live). Finally, many universities subsidise research from teaching income. The strategy here has been to enhance the prestige of the university (and of course its senior academics), thereby attracting students who wish to attend a prestigious university however limited its commitment to teaching. In my imaginary university, the emphasis would be on scholarship rather than the more circumscribed activity of research. Research would take place, but in defined research centres, which would be expected to be financially self-supporting.

These figures are of course speculative. It could be argued that there should be a balance more in favour of small group teaching rather than lectures, or that some non-STEM courses incur higher costs such as those in the arts (which require specialised equipment and incur high material costs). People who propose such arguments are welcome to make their own revised calculations. A further criticism is that academic staff would be unwilling to spend so much time on teaching. This is probably true of many academics at present, but the solution lies in recruiting people who enjoy teaching for its own sake, combined with a strong desire to keep abreast of current knowledge in their field.

Is this imaginary university ever likely to happen? I would prefer it to be a co-operative, run by its staff on John Lewis lines. But it is rather more likely that private organisations will spot the commercial advantages, charge rather more than £6,494/course but a lot less than the market rate of £27,000. Perhaps then students in the more expensive universities will realise how much they are being ripped off.

Working with ethical complexity

All work involves (or ought to involve) some ethical complexity, although this occurs less in some jobs than others. An ethically simple job would be the sale of lawful and non-harmful goods. The salesman is employed to sell, and receives payment to do so. The ethical requirement, therefore, is to meet the terms of his contract with his employer, which usually involves the aim of maximising sales. However, a conflicting ethical demand could arise if the salesman suspects that a customer does not need or cannot afford the product he has persuaded him to buy. The salesman may resolve this dilemma by telling himself that the customer is exercising free choice. This is more convincing if the salesman has taken the trouble to explain the full costs and features of the product. This is now often required by law, as a means of protecting consumers who would otherwise be ‘mis-sold’ products.

At the opposite end of the ethical complexity scale are occupations such as medicine, which require the frequent resolution by individual practitioners of multiple and often conflicting ethical demands. This has generated the academic discipline of medical ethics, to investigate these conflicts and propose rules for their resolution. But similar degrees of ethical complexity can occur in much poorer-paid and less well-trained occupations. For instance, support workers in residential care for people with cognitive impairments face ethical dilemmas on a daily basis. Do they allow their clients to take the kind of risks acceptable for almost all people, or do they protect them from potential harm? In more practical terms, do they allow a client who has no sense of direction and no awareness of the danger of motor vehicles to walk out into the street alone, or do they let them out only if they are accompanied by a member of staff or other responsible person? Should the staff allow a client to eat what they want, even if this results in gross obesity, or do they restrict their access to food? Do they allow a client to repeatedly hit their head against a wall, or do they restrain their limbs and insist they wear a protective helmet?

Faced by these dilemmas, support staff (and the public at large) usually favour exercising a ‘duty of care’, to protect those with severe cognitive impairments from exploitation and harm. Duties of care are most commonly experienced in the way in which we deal with children and people who are ill. It is not surprising, therefore, that some staff talk of their clients as if they are children rather than adults, or sick people rather than disabled and healthy. This is not sign of incompetence or malevolence, but a way of dealing with the real psychological stress involved between treating such a person severe cognitive impairments as an autonomous adult (as specified in numerous policy statements), while at the same time carrying out tasks that emphasise constantly their very lack of autonomy.

Piracy on the high streets

The economic history of Britain is a story of the many ingenious ways in which our respected financial institutions have defrauded the public. After the South Sea Bubble, numerous nineteenth century bank crashes, the bankrupting of Lloyds names, the collapse of BCCI, and the mis-selling of insurance policies and investment bonds, we now have payment protection insurance (PPI). This has involved selling spurious insurance policies (with or without the consent of the purchaser) to people taking out loans and mortgages. The ostensible purpose of the insurance was to meet the cost of loan repayments should the purchaser fall ill or become unemployed. PPI proved a big earner for financial institutions: only 15% of income from PPI was paid out in claims. This was because insurance payouts were often refused. As with unregulated health insurance everywhere, liability for illness could be denied because of ‘pre-existing conditions’. Once this fraud was exposed, the banks fought a long campaign to block repayment. However, this seems to be coming to an end, as some are now making provision for repayment - £3.2 billion in the case of Lloyds and £1 billion for Barclays.

This raises the question of what are banks for? A conventional answer is that they are safe depositories for our cash which banks use to advance loans to individuals and businesses. These should be low-risk investments which are repaid with interest. Income from interest is in turn used to pay a smaller rate of interest on depositors’ accounts, a reasonable dividend for the banks’ shareholders, and to meet the staffing and other costs of the banks themselves.

If banks have tried to defraud their depositors, they have hardly been favourable to their other main stakeholders. Banks have lent £2 billion less to small and medium enterprises than the government target, and many small businesses have been forced into receivership or have been unable to borrow money to meet the costs of orders. Shareholders have hardly benefited either. RBS and Lloyds TSB have been partially nationalised, while Barclays’ shares are 35% of their peak value in January 2007. So who has benefited from the frauds perpetrated by our banks? The answer of course is their senior managers, who, despite the exposure of fraud, bankruptcy, and nationalisation, have continued to award themselves huge salaries and bonuses (£2 BILLION for Barclays alone this year). A British bank therefore resembles a galleon full of treasure that has been captured by pirates, who sail around the high seas robbing all they encounter.

There is a general lesson here. People who rise to the top, whether in business or politics, tend to be more egoistic, more ruthless, and less moral than the rest of us. This egoism can generate the energy to achieve great things, but it is essential that we regulate their actions and watch them carefully for our own protection. Of course, the senior managers of the banks argue that restricting their bonuses and regulating their activities would only encourage them to move their operations overseas. But this is an unconvincing threat - rather like the Mafia threatening to leave Italy.

               

What we ate and what we called it

In Jack Vance’s wonderful science fiction story The Killing Machine, his hero Kerth Gerson visits an area of a city inhabited by a people called the ‘Sandusk’, notorious for their cuisine:

The air of Ard Court smelled richly indeed, with a heavy sweet-sour organic reek that distended the nostrils. Gersen grimaced and went to the shop from which the odours seemed to emanate. Taking a deep breath and bowing his head, he entered. To right and left were wooden tubs, containing pastes, liquids, and submerged solids; overhead hung rows of withered blue-green objects the size of a man's fist. At the rear, behind a counter stacked with limp pink sausages stood a clown-faced youth of twenty, wearing a patterned black and brown smock, a black velvet headkerchief. He leaned upon the counter without spirit or vitality, and without expression watched Gersen sidle past the tubs.

"You're a Sandusker?" asked Gersen.

"What else?" This was spoken in a tone Gersen could not identify, a complex mood of many discords: sad pride, whimsical malice, insolent humility. The youth asked, "You wish to eat?"

Gersen shook his head. "I am not of your religion."

"Ha ho!" said the youth. "You know Sandusk then?"

"Only at second-hand."

The youth smiled. "You must not believe that old foolish story, that we Sanduskers are religious fanatics who eat vile food rather than flagellate ourselves. It is quite incorrect. Come now. Are you a fair man?"

Gersen considered. "Not unusually so."

The youth went to one of the tubs, dipped up a wad of glistening black-crusted maroon paste. "Taste! Judge for yourself! Use your mouth rather than your nose!"

Gersen gave a fatalistic shrug, tasted. The inside of his mouth seemed first to tingle, then expand. His tongue coiled back in his throat.

"Well?" asked the youth.

"If anything," said Gersen at last, "it tastes worse than it smells."

The youth sighed. "Such is the general consensus."
The general consensus is that English food was in the past not far removed from that of the Sanduskers, although things are thought to have improved in recent decades with food introduced by South Asians, Europeans and others. My memories of food from the 1950s are different - there was certainly a lack of variety, but the food (at least that cooked by my mother) was tasty and nourishing. When I was at primary school, each day began with porridge and milk. At lunchtime, I would walk home and have dinner, which usually comprised meat and two veg, followed by a pudding such as apple pie and custard. I would then walk back to school. After school, I would have tea, which might be poached eggs on toast. A bit later, my father would cycle home from work, and would sit in the kitchen having his dinner (the main course of which he flavoured heavily with brown sauce). We would all eat supper together. This was a snack just before bedtime, and always comprised toast and a cup of tea.

Sundays were different. We would start the day with a vast fried breakfast. This would be followed in mid-morning with coffee (the only coffee we had all week). This was made from instant coffee with milk. At about 1pm, we would have our dinner, which was usually roast meat with roast potatoes and sundry boiled vegetables in season. My father would have sausages instead because he disliked the appearance of meat. Pudding might be a sponge or apple pie with custard. In the evening, tea would be a salad. This was never chopped or dressed, although there might be a sweet salad cream available. Supper was as usual.

Despite considerable amounts of food, we did not become obese or otherwise unhealthy. This was probably because we walked everywhere, played in the street until it got dark, and watched very little television. The state rations of orange juice and cod liver oil probably also helped.

Since those days, I have led a less healthy lifestyle. I do, however, eat food from many different cuisines, much of it frozen, processed, or transported long distances. I have, like many English people, also become utterly confused about what to call the meals I eat. Words like ‘dinner’, ‘supper’, ‘tea’ (including its ‘high’ or ‘afternoon’ variants), ‘lunch’ and ‘luncheon’ seem to mean different things to different people.‘Dinner’ now seems to be any sizeable meal whenever it is eaten, although this rule does not apply to Sundays, when local pubs advertise a ‘Sunday lunch’ of roast beef and Yorkshire pudding. In despair, I now use the phrases ‘midday meal’ and ‘evening meal’ in conversations to enhance mutual understanding. Everybody seems to understand what a breakfast is, although what we eat at that meal varies greatly. Still, on Sundays I still eat a big fried breakfast with a roast dinner later. Some traditions never die.   

Vance J (1967) The Killing Machine. Glasgow: Grafton Books.

See also Dining in Yuppieland

Osama Bin Laden’s prison

Osama bin Laden is dead, but he spent the last five years of his life in a home-made prison. The ‘compound’ in Abbotabad was surrounded by 12 foot high walls topped by barbed wire. There was no garden, just a dusty exercise yard. Bin Laden never left the compound, but spent all his time in one room of a crumbling ill-equipped house, without air conditioning, phone or internet. He could see little from his room of the pleasant town or the lovely hills that surround it.

The death of Osama bin Laden has generated the usual plethora of ingenious conspiracy theories. But the key issue is not who has died, but what has died. A man so isolated could only communicate by couriers, perhaps carrying computer discs. It is difficult to see how he could have actively led his organisation in such circumstances, beyond the rare message intended to inspire its members. His location also made him and Al Qa’ida vulnerable. Couriers are relatively easy to track, and, if detected, would have made the whole al Qa’ida network more open to surveillance. If Pakistani intelligence services did know of bin Laden’s whereabouts, they may have preferred him alive than dead, particularly since they would well understand the power of martyrdom.

The urge for martyrdom combined with mass murder has of course been the chief weapon of al Qa’ida. The urge to destroy others, whether family members, workmates or random members of the public often culminates with the suicide of the murderer. This phenomenon occurs in all countries and religions, and participants have usually led unexceptional and conformist lives until that point. The skill of Al Qa’ida, like the Tamil Tigers (who invented this form of warfare), is to provide a reason for and to reinforce the desire for martyrdom that occurs in many people who are depressed, or idealistic, or disoriented.

The great personal tragedies that have resulted from this barbarism have not advanced the purported cause of Al Qa’ida whatsoever. But they have had a profound effect on the countries it opposes: security services in North America and Europe have been massively empowered to override human rights; some politicians in the USA enthusiatically support torture (and some of those in Europe collude with them); travellers are now everywhere regarded as potential terrorists, screened, X-rayed, and frisked; armies, human and financial resources have become committed to multiple forever wars; and cheering crowds have gathered outside the White House to celebrate the execution of an unarmed man by a state death squad.