Such experiences encouraged me to reflect with some detachment about what my wealth really meant. Did I value it? Yes: it was nice to feel that I would never again have to worry myself sick about how I was going to pay the bills. Did I want to keep it? Unquestionably, up to a point. If you have ever been poor, as I had, you tend to vow, as soon as you are in a position to do so, that you will never be poor again. I had no intention of ever again not knowing how our retirements would be paid for, or how Giles would be provided for after we were dead.
But £2m or £3m would be enough for that. What about the rest? There is, after all, a limit to the number of fine dinners you can eat, and as for yachts, jets and multiple homes, I’ve never really felt the urge. I have already mentioned that Derek was unenthusiastic about the idea of a life of luxury. He objected not so much out of reasoned principle as through a visceral sense that extravagant self-indulgence was simply wrong. My own instincts are less puritanical, but within a few months of being a multi-millionaire I had begun to feel grateful for Derek’s restraining influence. Left to myself, I might well have succumbed to the invisible forces that encourage rich people to increase their living costs until they are no more free from financial pressures than anybody else. As it was, I found myself stopping and thinking about what I really wanted.
I realised that I could get pleasure from nice clothes, and perhaps from a few works of art. Apart from that, however, there was, when I thought about it, little appeal in luxury for luxury’s sake. The advantage of being rich was not the possessions it could provide but the security and freedom. That was all that really mattered to me: to know that Giles’s future was assured, and to be free, otherwise, to spend my time as I chose.
Once those two things were secure, it seemed ridiculous not to do something useful with whatever millions were left. My experiences with the Kingwood Trust had given me a taste for putting my wealth to good use. There were now three people living relatively happily at The Cuddy, with five more at White Barn and three just settling into Conchiglia. Our expertise as an organisation seemed to grow with our ambitions, and with a highly professional management in place there was every reason to believe that the wealth I had settled on the Trust would continue to be well spent. When I thought about this, I realised that I could derive far more satisfaction from spending my money in this kind of way than from spending it on luxuries for Derek and me that we didn’t really want.
The appearance of these extra millions was an opportunity to do more of the same, on a more ambitious scale. With this in mind, in late 1996 I established a new charitable foundation, The Shirley Foundation, which I endowed with a substantial trust fund.
21: The Bitterest Pill
PERHAPS IT seems odd that I should have found it necessary to start the Shirley Foundation, when the Kingwood Trust had already been established, with some difficulty, and was already contributing positively to many lives that had been affected by autism. One reason was that the tax situation had become very complicated with Kingwood (because Giles was a beneficiary, and because of the combination of private and public funding), whereas with the Shirley Foundation I could simply transfer FI Group shares directly to the Foundation, without tax. But there was, unfortunately, another reason. Problems had arisen with the Kingwood Trust that were making it difficult for me to continue with it.
These problems had little to do with the functioning of the Trust itself. Instead, they were related to Derek.
It is difficult for me to describe this strange episode in our lives. To a large extent it is part of Derek’s story rather than mine, and I feel uncomfortable describing it from my perspective. But I cannot tell my own story coherently without mentioning it.
The origins of the problem went back many years, almost to Giles’s birth. Derek was a passionate father, who was devastated by Giles’s autism and transcended his grief by vowing to do everything within his power to be the best possible parent to him. This admirable attitude had much to commend it, and was entirely in keeping with Derek’s character. He stuck to his vow heroically, and I admire him greatly for it. But his approach also had drawbacks. Whenever there was any question of taking a step whose effects would include making life easier for us as Giles’s parents - for example, by sedating him, or by putting him in some kind of institution - Derek’s conscience would kick in. Such steps were impossible, he would insist: they would constitute a betrayal.
In fact, this wasn’t always true. In some situations, helping the carer can be the best way to help the cared-for. But you can see where Derek was coming from and perhaps understand how, over the years, Derek’s attitude to Giles became ever more fiercely protective - until it was almost paranoid. Whatever anyone else proposed for Giles - medication, restraint, isolation, professional supervision - Derek would suspect the motives of those involved. Were they trying to short-change Giles? Were they putting their needs before his? Was his quality of life suffering so that their lives could be easier?
These suspicions would have been easier to dismiss if he hadn’t from time to time been demonstrably right. With Borocourt, for example, it had been Derek who had first insisted that Giles was not being treated with the care and respect he deserved. I dismissed his suspicions at first, and was proved wrong.
The subsequent long-drawn-out saga of our complaint against the hospital - which we made in 1985 and which was finally declared resolved by the Health Ombudsman (with a frustrating ruling in which only two of our nine complaints were fully upheld) in 1987 - fanned the flames of his paranoia; as did our long drawn-out struggle to secure for Giles the state funding to which he was entitled. It sometimes seemed that every organisation we dealt with wanted to sacrifice Giles’s wellbeing to suit its own private interests, while bureaucrats and health professionals alike seemed to be trying to pull the wool over our anxious eyes. It was hardly surprising that Derek should feel that, without his ceaseless vigilance, suspicion and stubbornness, Giles would be lost.
Later, however, when the Kingwood Trust was up and running, Derek’s protective attitude began to impinge on his duties as one of the charity’s trustees - and would eventually cause us to fall out badly. He would come to trustee meetings and be intelligent and involved - his knowledge of autism and the care needs of people with autism was encyclopaedic by this stage - but essentially his concerns always involved Giles. The Trust was responsible for three houses and 10 beneficiaries by then, but for Derek it was always “Giles needs this” or “Giles needs that” or (often) “Giles is being given too much medication.” (There was one medication, a strong anti-psychotic drug called Haloperidol, that bothered him particularly.)
These really weren’t issues that a trustee should have been talking about. They were personal issues, not strategic ones. But Derek was being a parent rather than a proper trustee. He couldn’t help it; and the trustees, paradoxically, were obliged to take his views into account.
The board of trustees tolerated the eccentricity. It was hard not to sympathise with such a devoted father. But then the difficulties multiplied - and one incident in particular caused an enormous amount of tension. Derek became suspicious of one of the carers who was working shifts at The Cuddy. It was hard to know why: the man seemed pleasant and competent and indeed charming. But Derek insisted that something was wrong, eventually homing in on the accusation that the man was locking Giles into his room at night - bad practice from a safety point of view and also a major infringement of Giles’s autonomy. Derek was unable to substantiate this accusation, and did not even suggest an explanation as to why this might be happening, but he none the less made a formal complaint about it. The social services were forced to investigate, once the complaint had been made, and in due course it was rejected. (Some time later, however, a woman wrote to us, saying that she had been regularly “entertained” at night in the Cuddy’s sitting-room by the man in question - which suggested that, while the allegation of wrongdoing r
emained unsupported by evidence, Derek’s suspicions might have had slightly more basis in reality than I had assumed.)
By early 1997, the Trust had developed a life of its own, and the tensions were getting worse. I was still chairman of the trustees, but my significance as founder was becoming irrelevant, just as it had at FI Group. The Trust had acquired a new chief executive, Mary McGuire, who tried to organise things in a far more professional way and, in the process, fell out with Paul Moran, the longest-serving member of our original band of “amateur” carers at both Redcot and The Cuddy and, as such, one of the nearest things Giles had to a friend. Derek always said that Paul understood Giles’s moods better than anyone, and when Paul left - which was sad but not improper - Derek never forgave Mary for it.
The ill-feeling became embarrassing. At trustees’ meetings, it began to feel as though Derek was looking for ways to catch Mary and her team out. The idea that the Trust was inherently a good thing - perhaps the best thing that we had ever been able to do for Giles - was forgotten. In Derek’s mind it had joined all those other sinister forces - doctors, local authorities, asylum administrators - that conspired to deprive our son of the love and happiness that we longed for him to have.
Eventually, the board of trustees had no alternative but to ask Derek to stand down as a trustee - especially when he threatened to get the Trust closed down. Yet I had no alternative in the short-term but to carry on as chairman, because the Trust was not yet ready to run without me - and, not least, because I believed in it. This meant that, in Derek’s eyes, I had joined the ranks of the enemy. We quarrelled openly about this once or twice, then lapsed into a far deadlier silence, distant and resentful. We had been drifting apart in many ways over the years, each dealing with our share of our common burden in our own fashion. Now, shockingly, the common ground seemed to have vanished.
I tried to distract myself from the unhappiness by focusing on other things. I had, after all, all this money at my disposal. If I couldn’t enjoy doing good with it through the Kingwood Trust, I would do so through the Shirley Foundation. I had a keen sense of my own mortality at the time, precipitated both by Renate’s death and by my recent retirement. So, remembering Andrew Carnegie’s famous dictum (“The man who dies rich dies disgraced”), I began to give my fortune away.
The Shirley Foundation made a series of transfers of shares to the Kingwood Trust, in the hope that thereafter it would thrive without me. I then searched around for other projects and found myself looking into the Worshipful Company of Information Technologists. I have already mentioned that I was involved in the setting up of this company. It now struck me that it could be a perfect candidate for some serious financial support. I was still feeling my way as a philanthropist, but it had already occurred to me that I had more to contribute than mere cash. My whole career - my whole fortune - was based on my ability to find better ways of doing things, to turn efficiencies into profits and innovations into wealth. So why not apply the same principles to my philanthropy? In other words: why not select recipients that were not just worthy but capable of multiplying the value of the gift by combining it wisely with expertise and intelligent systems?
The WCIT seemed to meet these criteria perfectly.
It would be many months, including an extended period of anonymous research, before this idea became a financial reality; but eventually, in 1998, the Shirley Foundation would donate £5m to the Worshipful Company. The first £1m provided a small working Hall (the first new Hall in the City for 50 years). The other £4m went into the company’s own charitable trust, from where it could be applied to a variety of good causes with the added value of the expertise of those applying it. For example, if the trust gave money to a struggling not-for-profit organisation, freemen and liverymen of the company - all IT experts - would also be actively involved in giving that organisation IT advice. Subsequent studies have shown that, if members’ time contributions are taken into account (using commercially defined consultancy rates), the value of a gift is leveraged by at least 10 to one by passing through the WCIT. In other words, the Shirley Foundation’s £4m could eventually be expected to result in benefits worth £40m.
Even back then, in the late 1990s, I was beginning to appreciate the dazzling potential of this sort of intelligent philanthropy. It made the idea of giving away my hard-earned wealth considerably more exciting.
Meanwhile, another project had captured my imagination. It began in September1997, when Mary McGuire mentioned that she was planning a visit to the celebrated Higashi school in Boston, Massachusetts, during a trip to the US. I was due to be in the US as well, so I asked if I could come along. She agreed, and one bright New England autumn morning she and I arrived in the Boston suburb of Randolph for a day-long tour of the world-famous specialist school for children with autism.
What we saw there astonished me.
A large, important-looking red-brick building in flat, spacious grounds, the Boston Higashi School seemed as full of confidence, purpose and order as a high-achieving Ivy League private school. Everything was light and spacious and in good repair, with an approach to design and decor that combined minimalism with warmth. As for the pupils, they were so well-behaved, in and out of class, that it was easy to mistake some of them for staff (as I initially did when I saw a couple of young men laying the table in the dining-room). The contrast to the behaviour I was accustomed to in children with autism was dramatic. In fact, they seemed so well-adjusted and calm that I assumed that - obviously - they must have come from a much less challenging point on the autism spectrum than Giles. Then our guide told us what some of them had been like when they first arrived, and I realised that many of these children had once been every bit as challenged and challenging as Giles. But there had been something in their education here that they had responded to.
I’d been vaguely aware of Higashi for several years by this stage, but I understood it only in terms of the broadest brushstrokes. The original Higashi school had been opened in Tokyo in 1964. Its founder, Dr Kiyo Kitahara, had developed an approach to autism that she called Daily Life Therapy - an approach that proved so successful that after 20 years or so an American offshoot was established, opening in Boston in 1987.
Daily Life Therapy aims to give children with autism the confidence and tools to live independently by immersing them in a regime that is at once very stimulating and very structured. The system has three “pillars” (Dr Kitahara’s term): vigorous physical exercise, which allows them to work off their frustrations instead of expressing them through destructive behaviour; emotional stability (provided by large numbers of highly trained staff - usually one for every three pupils); and intellectual stimulation, provided through very repetitive, almost ritualistic group tuition that exploits the autistic love of routine to impart the basics of literacy, numeracy, science, the arts and IT, as well as teaching a range of social skills. Disruption is kept to a minimum by the high staffing ratio, and by the policy of defusing any incidents with a quick burst of vigorous exercise. Distractions are kept to a minimum by, among other methods, keeping all teaching materials out of sight, apart from those that are actually in use.
The ostensibly communal nature of this teaching has the paradoxical goal of allowing each child to find what Dr Kitahara (who died in 1989) called the “most precious bud of self-identity” - having first equipped them with the self-belief and “stability of emotions” that they need in order to be independent.
There is a profound optimism at the heart of the system. “Higashi” means “east” in Japanese and was chosen by Dr Kitahara because it symbolised the hope of each new day’s dawn, and the foundation behind the Tokyo and Boston schools is called the Higashi Hope Foundation. By contrast, the experience of autistic children in Britain in the second half of the 20th century - and of Giles in particular - could almost have been defined by the lack of hope in those whose job it was to teach them.
Rem
arkably, Daily Life Therapy seems to work. The system doesn’t “cure” autism, but it does ameliorate its effects, by equipping pupils with a range of social and intellectual skills that greatly increase their chances of living with some degree of independence and contentment as adults. Perhaps that sounds like a modest goal, but I can assure you that, compared with Giles’s experience, it sounded to me like the Holy Grail.
Mary McGuire left Boston with a few good ideas for improving the support that the Kingwood Trust offered to those in its care. I left with a wilder dream. It would be several days before I dared articulate it even to myself, let alone to anyone else. (And there was no question, by then, of my sharing it with Derek.) But the thought kept nagging away at me: how different might Giles’s life have been, if he had been to such a school? And why could there not be such a school in the UK?
After a week or so, I began to use my contacts to ask this second question in places where it might make a difference. I was rewarded with a meeting with some senior officials in the Department for Education and Employment (as it then was). Their message was not especially encouraging - but not overwhelmingly discouraging either. The Department would love to have such a school in the UK, it seemed; but there was no question of one coming into existence unless a group of parents or other concerned parties took it upon themselves to found it.
I could hardly leave it at that. Instead, over the next three months, I asked around; spoke to an educational consultant, John Woodhouse, whom the DfEE had recommended; commissioned research into likely demand for a Higashi school in the UK; made contact with the Higashi Hope Foundation in Japan to see if they would be interested in the creation of a European offshoot; made contact with some likeminded parents (a Higashi Parent Group); found (through the parent group) two trustees with relevant experience; employed one of them (Kate Luker) as project director; appointed both (the other was Alison Ainsworth) to a Steering Group which also included me and John Woodhouse; and commissioned an estate agent to look for a property in the Midlands (where autism-specific services were most lacking) that might provide suitable premises for a Higashi school.
Let IT Go_The Memoirs of Dame Stephanie Shirley Page 25
