Precious Cargo: Adapting ‘Justice for Laughing Boy’ for the stage

I can’t remember when I first heard about Connor Sparrowhawk and his dreadful death. I remember meeting his mother, Sara Ryan, at a disability event sometime in 2015 and watching the #justiceforLB campaign develop on social media and in the press and did the little I could to support it. But, to my shame, it wasn’t until I read her brilliant book ‘Justice for Laughing Boy’ in 2018 that I really started to understand what had happened and why it mattered so much.

In some ways the story felt personal. My second son Joey is just a year younger than Connor, and, like Connor, has learning disabilities and epilepsy. Like Connor he needs help with certain things. And like Connor he generates enormous joy in his family and friends, and laughter and love surround him wherever he goes.

But there the similarities end. Because what happened to the 18-year-old Connor is that he was taken from his family home and plunged into a hell that is almost impossible to comprehend.

Slade House in Oxford (now thankfully closed) was what is known as an Assessment and Treatment Unit, one of the deeply dysfunctional NHS institutions set up to help (mostly) autistic people whose care has broken down and who could benefit from a short and focussed intervention.

The dreadful fact is, however, that these places are not fit for purpose, and people are often locked away in them for months, years even, largely forgotten about, except by their desperate families who do whatever they can to get them out.

Connor spent 107 miserable and lonely days in Slade House: no proper assessment was made, no treatment was offered, his freedoms were restricted, visits were controlled and finally, despite repeated warnings, he was left unattended in a bath where he drowned while having an epileptic seizure.

This was ten years ago: 4 July 2013.

In the face of the family’s unimaginable grief, a growing campaign for justice was created, not just to establish Southern Health’s (frequently denied) responsibility for this entirely avoidable death of a healthy young man, but to expose the many cases of neglect, cruelty and abuse which is still so often the experience of people in a wide range of medical, educational and residential institutions.

This homegrown campaign was a model of its kind, drawing together people of good will from many different backgrounds and skills, who found themselves confronted by an appalling culture of corporate buck passing, dead-eyed denial and the vilest kind of victim blaming.

But eventually, the world took notice.

And so, a few years ago, and armed with Sara Ryan’s brilliant book, I set out to dramatise the story for the stage: not just to tell audiences about what happened to Connor and his family, but to help them understand the challenges faced by so many people with learning disabilities and their families today.

It was a strange feeling trying to give dramatic shape to a group of people who are—with one tragic exception—very much still with us. I was determined to respect their experiences and allow audiences to feel something of their grief, their rage, and their determination to create a better world. But, of course, I knew it also had to be a vivid drama. Striking the right balance was hard. 

Fortunately I had two things on my side.

The first was Sara Ryan’s book which tells us so much about the everyday life of Connor and his family. She lets us in in a way which is honest, revealing and, as with all the best writing, rich with contradiction. She offers an overwhelmingly powerful and detailed account of what led up to her son’s death and even intersperses the book with brief imaginary dialogues with Connor which I have been able to transfer almost verbatim. She also explains (and celebrates) how the #justiceforLB campaign emerged and achieved so much in the face of bureaucratic obfuscation and the massed ranks of well-paid chief executives and their expensive lawyers.

I was also grateful to have Sara’s unwavering support for the project and have been constantly touched by her willingness to check my factual errors, correct my misunderstandings, and prompt me to be better, bolder, and braver. I would readily understand if she felt she couldn’t face revisiting the pain, but I think she knows that one of the best ways of working for the rights and dignities of people with learning disabilities today is to show just how badly things can go wrong.

Adapting a story like this for the stage is quite a challenge: scores of people were involved and the action took place in dozens of different locations, but I hope I’ve found a way of presenting it economically, vividly and with a clear sense of purpose. Time will tell.

Maybe I’m a glutton for punishment, or perhaps I’m just the right person for the job, but I’m delighted to be directing the play too. Certainly, in writing it I imagined exactly what the production might look and sound like. No doubt a brilliant cast and production team will make me think again: constructively, creatively and collaboratively.

It took time to find a theatre that was prepared to invest the money, resource and reputation to stage it, reflecting perhaps the low profile that people with learning disabilities enjoy even in—especially in, perhaps—establishment circles. It says something that it is the unsubsidised commercial theatre that has taken it to heart, and I’m grateful, touched, and moved that Stella Powell-Jones and David Doyle at the tiny Jermyn Street Theatre is presenting it in April and May in coproduction with Danny Moar at the Theatre Royal Bath, and then, hopefully, on tour in Spring 2024. 

Inevitably I feel a real responsibility to honour Connor’s memory in the best way I can: his family, his friends and everyone who was involved in the campaign deserve no less. This is precious cargo and I’d better not mess it up.  

But ‘Justice for Laughing Boy’ is no dusty memoir: it is a living, breathing campaign which has achieved so much. But there is still so much to do if people like Joey are to be granted the fundamental human rights and dignities that Connor was so brutally denied.

For the dreadful fact is that the approximately one and half million people across the country who have some level of learning disability are still forgotten, neglected and mistreated. The culture of appalling negligence and evasion described in ‘Justice for Laughing Boy’ is everywhere to be seen, and Connor Sparrowhawk wasn’t the first young person to die in an institution supposedly set up to help, and tragically won’t be the last.

In 2017 I wrote a play called ‘All Our Children’ about the Nazi persecution of disabled children which was staged at Jermyn Street. Tragically ‘Laughing Boy’ is its dreadful and logical sequel.

A change has to come. Maybe this play can, in some small way, help to make a difference.

Tickets for ‘Laughing Boy’ are available at https://www.jermynstreettheatre.co.uk/show/laughing-boy/

No Child is Ineducable: Confederation of Schools Trusts, Keynote Speech

Thank you for that kind introduction. It’s a great honour to be here.

I should start by declaring that I am no educationalist. I don’t work in education and I’m not an academic. Nor am I a policy wonk. The best I can claim is a degree in English Literature from a chilly university in the Fens, and I’m not sure that counts.

What I do have, though, which is the main reason I’m here, is lived experience of parenting a very different kind of child, a very different kind of young person.

For my second son, Joey, now 27, has intractable epilepsy and profound learning disabilities. There are going to be some pictures of him projected behind me for when I get boring.

He has a big smile and an infectious laugh but needs help with the most basic life skills. He can say ‘no’, ‘yes’ and, delightfully, ‘cup of tea’, and communicates with a mixture of basic Makaton signing, PECS (the Picture Exchange System) and dogged persistence. He’s much loved and generates great joy, but there is no denying the severity of his disabilities.

But being Joey’s dad has changed my life. It has also helped me rethink the values that I was brought up to cherish.

I’ve just finished writing a book which charts how changing attitudes to learning disabilities have led to changed lives, both for good and ill. It has shown me that we cannot educate and support learning-disabled people effectively without some understanding of the history and culture that surrounds them.

And that is the issue I want to explore this afternoon, along with some general thoughts about the education of people like my Joey.

1.

But what do we mean by learning disabilities?

There is widespread agreement about three characteristics:

First, learning-disabled people have relatively limited intellectual capacities and need support to live safe, happy and healthy lives.

Second, most learning disabled-people were born with their impairments, which are not curable through medical intervention.

Third, although learning disabilities are sometimes associated with physical disabilities, these are distinct phenomena.

Learning disabilities are, of course, not the same as learning difficulties. While challenges such as dyslexia, dyspraxia and dyscalculia can be managed, even overcome, a learning disability is permanent. The two sometimes overlap, but the word ‘difficulty’ is too often a euphemism for what is, by any standards, a genuine impairment.

The causes are many. Everyone who has Down’s Syndrome has a learning disability, as do some people with cerebral palsy, spina bifida and other physical impairments. There are several genetic syndromes which affect cognitive abilities, and some autistic people are also learning disabled, though by no means all.

For the majority, however, (including my Joey) the cause is unknown.

Contradictions are rife: thus, some learning-disabled people are non-verbal, others chatter away happily; some have problems with physical co-ordination, others are remarkably dextrous; some enjoy human contact, others are introverted; some have an innate musicality, while others are distressed by audible stimuli. The crucial point is that, like all human beings, everyone with a learning disability is different, and generalisations are best avoided.  As is sometimes said: ‘When you’ve met one learning-disabled person, well, you’ve met one learning-disabled person.’

There are as many as one and a half million such people in Britain today (about 2% of the population) and they’re to be found in every class, ethnicity and demographic.

This is, by any standard, a large and loosely defined population.

2.

Curiously, attempts at labelling and diagnosis such people haven’t always helped.

It was in the late eighteenth century that so-called ‘idiots’ started to be seen as an identifiable group, requiring specialist education, support and care, while prompting questions about the nature of their condition and, astonishingly, to what extent they could be accepted into the category of the human.

The mid nineteenth century saw the opening of specialist asylums, although most learning-disabled people stayed with their families, surviving as best they could. Optimism was in the air and, oddly, some people thrived.

By the late 1800s, however, and influenced by the pseudo-science of eugenics, ‘the feeble minded’, as they were often called, were increasingly seen as an existential threat, ‘a social menace’ to be institutionalised en masse.

New categories were created, with terms like ‘imbecile’, ‘moron’ and ‘mental defective’ indicating varying degrees of impairment. These dictated accommodation in asylums and institutions, with the most severely disabled hidden as far away as possible.

But the strange fact is that many of these people weren’t learning disabled at all. They were alcoholics, unmarried mothers, dyslexics, schizophrenics—a range of misfits that polite society preferred to avoid.

Nevertheless, and responding to an entirely unproven fear of heritability, tens of thousands of people across America and continental Europe were forcibly sterilised, leading, ultimately, to the horrors of the Nazi persecution, which resulted in the systematic murder of as many as 250,000 disabled people. They were, apparently, leading ‘lives unworthy of life’.

After the war, more labels appeared with ‘subnormal’, ‘retarded’ and ‘mentally handicapped’ suggesting a range of deviation from the so-called ‘norm’, and support dictated—and rationed—by such tags.

And, of course, the process continues.

Now, I recognise that a diagnosis can be helpful, and I’m certainly not anti-science. But I often find myself quietly content that the cause of Joey’s disability remains a mystery. What matters is ensuring that he has an appropriate education and a good life, not what words are used to describe his impairments. A label doesn’t always guarantee a better life. At times, it’s done the opposite. ‘Label jars, not people’, as activists sometimes say.

It's just the first of several contradictions.

3.

A second can be found in the way that artists and intellectuals—often self-proclaimed progressives, perhaps like some of us here—embraced the very worst aspects of eugenics.

And it’s pretty grim stuff, I’m afraid.

Thus, Bernard Shaw enthused that ‘eugenic politics would finally land us in an extensive use of the lethal chamber’, where ‘a great many people would have to be put out of existence simply because it wastes other people’s time to look after them’.

Using the same ghastly phrase, DH Lawrence dreamt of ‘a lethal chamber as big as the Crystal Palace, with a military band playing softly’. He volunteered to ‘bring them all in, the sick, the halt and the maimed’, boasting that he ‘would lead them gently, and they would smile me a weary thanks; and the brass band would softly bubble out the Hallelujah Chorus.’

Worst of all is Virginia Woolf’s diary entry for 9th January 1915, where she describes meeting ‘a long line of imbeciles’:

‘The first was a very tall man, just queer enough to look at twice, but no more; the second shuffled, & looked aside; and then one realised that everyone in that long line was a miserable ineffective shuffling idiotic creature with no forehead, or no chin, & an imbecile grin, or a wild suspicious stare. It was perfectly horrible. They should certainly be killed.’

No ‘room of their own’ for learning-disabled people, it seems.

Astonishingly, the defeat of Nazi Germany didn’t bring an end to such thinking.

Indeed, William Beveridge, the beloved creator of the Welfare State, slipped out of the gallery of the Commons during the debate about his report to reassure the Eugenics Society that his plan was, quote, ‘eugenicist in intent and would prove so in effect.’

Meanwhile, the psychiatrist Dr Alfred Tredgold updated his influential Textbook of Mental Deficiency to recommend euthanasia for the ‘80,000 or so idiots and imbeciles’: ‘Many of them are utterly helpless, repulsive in appearance and revolting in their manners. Their existence is a perpetual source of sorrow and unhappiness to their parents. In my opinion it would be an economical and humane procedure were their very existence to be painlessly terminated.’

Such prejudice from the learned hasn’t ended, with the evolutionary biologist Richard Dawkins arguing that eugenics would work if only we didn’t have ‘moral qualms’, and the much-lauded philosopher Peter Singer insisting that people like my Joey have no greater ‘moral value’ than intelligent animals.

It’s clear that a good education is no guarantor of decency.

4.

Tragically, something of this contempt was hard-wired in the 1946 National Health Service Act, which took more than 100 ‘mental defect’ asylums into public ownership and turned them into long-stay hospitals. 

By 1957, 125,000 people lived in such places, deprived of dignity, freedom and basic human rights. These hospitals were soon starved of funds, resulting in an epidemic of neglect, abuse and cruelty.

The 1960s and 70s saw high-profile inquiries into some of these institutions and slowly, much too slowly, they were closed and the people who’d been incarcerated in them were moved out. All too often, however, they were torn from places they’d lived in for decades and abandoned with little help or support. Indeed, learning-disabled people living lonely lives ‘in the community’ seem particularly vulnerable to fraud, exploitation and violence.

It’s not as if the curse of bad institutions was lifted. Although many of the large ones were closed, smaller ones survived, some even thrived, and we now find ourselves in the grotesque situation of various private companies making vast profits running care homes which are not fit for purpose.

And then, of course, there are the Assessment and Treatment Units where some of the worst violations have taken place, often defended as a response to so-called ‘challenging behaviour’. There are more than 2500 people locked up in these dreadful places today.

It’s tempting to dream of steady improvement. The depressing fact is that progress has been glacial: two steps forward and one step back is common, but so often, tragically, is one forward and two back.

The Whig version of history hardly applies to learning-disabled people.

5.

The last half century has seen some big shifts in thinking. What’s striking, again, is how contradictory these are.

Thus, the theory of ‘normalization’, the idea that learning-disabled people should be able to live ‘normal lives’, depends on an agreement about what is meant by ‘normal’. Not easy to define, as I’m sure you’ll agree.

Then, there’s the ‘social model’. This insists that people are disabled by society, not their impairment, and that instead of dwelling on deficit, we should accommodate difference. The problem is that this is much easier to redress with physical disabilities than intellectual ones: it’s one thing to make buses physically accessible, quite another to insist that bus drivers learn Makaton.

It's also triggered a debate about whether we should regard learning disabilities as an impairment at all, with some insisting that we should be talking about ‘learning differences’ and, increasingly common, ‘neurodiversity’.

I have a problem with this. Which is not to say that Joey is only disabled. But there are many things he can’t do that almost every human being his age can do, and hardly anything that he can do which others cannot. As such, he is distinctly disabled, and it is dishonest to say anything else.

Finally, self-advocacy insists that the best way to secure flourishing lives is to let learning-disabled people speak for themselves and listen to what they have to say. It’s a tremendous ideal, but hard when it comes to people with severe learning disabilities. Self-advocacy, by its very nature, privileges the most articulate.

As a result, I think we should ask what we mean by self-advocacy.  For Joey’s presence at a meeting about his future is a speech act in itself and should be understood as such. His beating heart and living breath make him much more than a name on a sheet of paper. 

The essential point is that we should engage with the realities of the individual’s needs instead of imposing crude templates on such a diverse and loosely defined group.

6.

Before I turn my attention to education, I’d like to lighten the mood by sharing something positive.

It was the afternoon of New Year’s Day 2021, and I was lying on the sofa with Joey, giggling at one of our jokes. I took a few selfies and tweeted one of them out with the simple, ironic message: ‘So terrible being the dad of a learning-disabled young man.’ I thought nothing more of it until I went back to my phone and saw a steady stream of learning-disabled children, young people and their families doing happy, ordinary things.

 Each carried its own message of mock gloom to which I replied with mock sympathy. For three frantic hours, I could hardly keep up, and when I woke up on Saturday it was still going strong. By Monday morning I was on Radio 4 talking about what it meant.

Something similar happened on the day children get their GCSE results: I tweeted a picture of Joey with a request to ‘remember the young people who’ve never got a qualification in their lives’. The biggest, however, was on Joey’s 25th birthday, when I posted a picture with the simple message that, ‘He’s never said a word in his life, but has taught me so much more than I’ve ever taught him.’ It received a huge response (80,000 likes) and was, for a moment, ‘trending’.

The crucial point is that people were opening their hearts and minds to learning-disabled people and recognising their value.

But while I love such positivity, I think we should be careful.

The first reason is because parents and siblings shouldn’t be bullied into stifling negative emotions. Joey’s family often find him maddening. Forgiving ourselves is essential not just for us, but him too.

The bigger danger is that such boosterism creates hierarchies.

Thus, a leading charity has recently rolled out an awareness campaign called ‘MythBusters’. This aims to discredit the idea that learning-disabled people are incapable, and profiles people who are achieving great things. This, it is argued, will help the public think of such people in a more positive way.

The danger is that it creates a hierarchy within learning disabilities, with the high achievers at the top and people like Joey at the bottom. It unwittingly suggests that people only deserve support if they’re capable of achieving great things. And, of course, that if they achieve great things they don’t need support.

The law of unforeseen consequences, I suppose.

7.

And so to education.

The history of special education is, well, educational.

 The story starts one day in 1798 when an eleven-year-old boy was found living in the woods of Southern France, nonverbal and with no understanding of society. He was taken to Paris where he struck a chord in a post-revolutionary society eager to define the essential qualities of the human, while indulging the romantic image of a life free of the artifice of civilisation.

The idealistic young doctor Jean-Marc Itard offered to teach the ‘wild boy’.

 Itard’s stated objective was educational, but so also was it philosophical. He saw Victor, as he soon named him, as someone who’d not been tainted by civilization and could, with proper teaching, become a ‘full human being’. Whereas others had dismissed him as ‘an incurable idiot, inferior to domestic animals’, Itard insisted that he could be helped. And under his tuition Victor made some progress, even learning some simple communication. His great breakthrough, apparently, was saying ‘lait’ (milk). A bit like Joey’s ‘cup of tea’. The two go together.

What’s distressing, however, is the cruelty of some of Itard’s methods: Firing pistols near Victor’s ear, exposing him naked to the cold, repeatedly giving him electric shocks and, at one point, hanging him head-first out of a fourth-story window.

And the advances were minimal and, after five years, Itard was in despair: ‘Since my pains are lost and my efforts fruitless, take yourself back to your forests and primitive tastes.’

Itard was especially mortified to discover that Victor’s childhood had failed to protect him from the usual adolescent vices. He was soon moved out of the Institute and lived with Itard’s housekeeper who cared for him until his death nearly twenty years later.

This episode presents us with a paradox. On the one hand, Itard’s extensive investigations suggested that learning-disabled people were capable of development, thus encouraging the special educationalists who followed; on the other, his elevation of intellectual capacity as fundamental to human status contributed to the growing sense of the ‘idiot’ as being beyond the pale.

As one historian bluntly put it, Victor’s ‘inability to acquire language—as evidence of reason and human status—sealed his abandonment’.

It’s a salutary lesson to us all.

8.

The late nineteenth century brought growing optimism about the educability of learning-disabled people, and the 1890s saw the opening of scores of ‘silly schools’, as they were called, along with a proliferation of theories about how best to teach such people, often with some success.

However, with the turn of the century and—ironically—the introduction of IQ tests, people with learning disabilities were increasingly thought to be ineducable, and the important thing was to prevent such people reproducing.

The carefully segregated institutions usually paid lip service to an educational purpose but, with the new pessimism, education was seen as largely pointless.

Indeed, the 1944 Education Act divided children into the ‘educable’ and the ‘ineducable’, with schooling only compulsory for the first category.

By the early 1960s, about 40,000 children were being taught in schools for the ‘educationally subnormal’, a phrase still heard in the 1980s.

In 1967, Stanley Segal’s polemic, No Child is Ineducable, made the case for universal education in the strongest terms, paving the way for the 1970 Education (Handicapped Children) Act, which transferred responsibility for learning-disabled people from the NHS to local education authorities.

It is telling, however, that Segal felt compelled to produce a follow-up book in the 1980s which challenged educators to deliver what had been promised, and a report from 2009 declared that the education system is still ‘living with a legacy of a time when children with Special Educational Needs were seen as ineducable’.

So long as this idea endures, so long as some children are deemed beyond the pale, we’re letting them down in the worst way imaginable.

The 1970 Act didn’t resolve how such education should be delivered and soon Margaret Thatcher, then education secretary, asked Mary Warnock to chair an enquiry. The chief recommendation of her wide-ranging report was to replace individual educational ‘handicaps’ with the catch-all category of ‘special educational needs’. This formed the basis of the 1981 Education Act, which insisted on mainstream settings wherever possible, gave parents new rights, and introduced ‘statements of special educational needs’.

The goal of ‘inclusion’ was central to New Labour’s vision and the 2001 Special Educational Needs and Disability Act stipulated that disabled children should, wherever possible, have the same experiences as their non-disabled siblings, with adaptations being made to ensure that they could participate in mainstream schooling. Above all, the Act outlawed discrimination and launched the system of SEND Tribunals.

This moment of optimism was not to last, however, and, in 2005, Warnock admitted that the system she helped create was ‘needlessly bureaucratic,’ describing inclusion as the ‘disastrous legacy of her report’. She even wrote a pamphlet promoting special schools. David Cameron’s Conservatives announced that they wanted to ‘end the bias towards the inclusion of children with special needs in mainstream schools’, reflecting a concern that inclusion had ‘gone too far’ and responding to the view that learning-disabled pupils were holding back their more able peers.

The swings in government policy are dizzying and those of us with lived experience of learning-disabled children have learnt to be cautious of all such announcements. Too often they feel simply performative. Our children deserve better.

9.

Before we turn to the current situation, we should take a moment to consider the nature of educating people with severe learning disabilities.

As we’ve seen, each person is different, but what I’ve observed with Joey is a continuous series of tiny markers of progress. He’s never going to get a place at Balliol, but he learns all the time, and to teach him properly you need to take pride in small steps: putting his trousers on the right way round, organising PECS to plan his day, using a bank card at the shops, emptying the dishwasher, laying the table. But you also have to develop routines, recognisable events that he can engage with, jokes that make him laugh. Creativity is essential. But then, creativity is always essential, not just with Joey.

Joey is no longer in formal education, and he lives in supported living, but his education continues, his development continues, he keeps on learning. And the key to that is interaction with people who have the right attitude, the right confidence, the right commitment, above all the right culture.

It’s sometimes said that ‘culture eats strategy for breakfast’ and nowhere is this truer than in special education: you can have all the best equipment, technical skill, smart buildings and glossy brochures, but without that ‘can do’ approach, that spirt of optimism and engagement, children with learning disabilities will always be let down. 

Culture matters and it is culture, above all, which is behind everything that follows.   

10.

You will all know about the current provision, a mixture of mainstream for those with moderate disabilities, and special schools for those with more pronounced challenges. There are strengths and weaknesses with both, and you’ll have your own opinions.

But what is the experience like for learning-disabled children, young people and their families?

 In the spirit of inquiry, I posted a Tweet last month asking exactly that. I got hundreds of replies. And various themes emerged.

The chief concern about the mainstream was that the child’s individual needs were in danger of being overlooked in an increasingly competitive culture of exams and high achievement.

It was repeatedly said that a placement depended, above all, on the right culture.  The problem is that this is usually delegated to the SENCOs, sometimes a junior teacher with limited sway. And, while teacher training includes special education, there is no requirement, apparently, for SENCOs to have ever worked with disabled children. Mainstream schools need to have trained staff in this field if they are to deliver.

But special schools have problems too.

There are evidently some excellent ones, but the concern is that they are in danger of becoming dumping grounds for a wide range of disabled children with little sense of why they’re being educated together.

What’s more families often have little connection to the broader community. Pupils frequently have to travel long distances and transport is required (and increasingly denied, especially to over 16s, even in this great city of Birmingham). Communication depends on ‘home-school books’ and can be patchy and it’s hard for families—often isolated already—to feel connected to the school and other families.

The common theme in both settings was a lack of individualisation. Even those with the best experiences—and there were many—felt that their child’s specific needs weren’t being taken seriously.  We obviously have some way to go before we deliver a fully ‘person-centred’ approach when it comes to ‘different’ children.

Meanwhile, parents, who are often dealing with a host of other challenges—from family stigma to marital breakup, failure to hold down a job to fighting for appropriate medical care and equipment—are forced into a never-ending battle to secure for their child the education he or she so obviously needs and deserves.

Navigating the system is agonising, and families are often driven to despair. There are many good things about the 2014 Children and Families Act’s attempt to deliver a joined-up approach, but the local authorities have often found it hard to deliver on the Education and Health Care Plans.

Parents are plagued by these plans, staying up all night worrying whether the mandatory Section F will secure the support that their child requires. Imagine parents of non-disabled children fretting about such basic things.

The dismal fact is that hard-pressed local authorities increasingly try to duck their statutory duties and, while most families who go to tribunal are successful, some councils spend vast sums of money on legal services of their own, with a recent report putting this at £60 million a year. What a staggering waste of money. I should have been a lawyer.

In many ways, Joey has been lucky. But we, too, found ourselves involved in endless letters, phone calls and meetings with lawyers, and I sometimes try to imagine what it would have been like if we spoke no English or were overawed by the authorities, let alone lived the chaotic lives that are so common. The process is needlessly bureaucratic and riddled with bear traps, and I have boxes full of letters and reports. Indeed, I once calculated that, for five critical years, we averaged eight hours a week fighting for Joey’s educational future.

At its worst it feels as if the local authorities think that some children are indeed ineducable, or at least that their education is a waste of public money.

And it takes it out of us to resist this disastrous logic.

11.

The truth is that the battles never stop.

Thus, while our non-disabled kids spend the summer going to holiday clubs or hanging out with their friends, their disabled brothers and sisters have little access to such support, and parents are exhausted before the school reopens.

And when term finally starts, they have a huge list of things to worry about: Will the transport arrive? Will the chaperone have had epilepsy training? Will the speech and language therapy be in place? Will the occupational therapist turn up? Will the therapy pool be working? And so much more.

The blunt truth is that the system must be made more effective and proactive, less appallingly stressful, if it is to stand a chance of delivering on its extravagant promises.

I’m afraid the schools themselves don’t always help. At worst, parents are made to feel guilty for imposing on them the burden of educating their child. I was appalled to read the Times Educational Supplement a couple of years ago offering SENCOs advice for dealing with ‘challenging parents.’ The writer described three kinds of parents (‘angry’, ‘pandering’ and ‘non-engaging’) and gave patronising advice on how to engage with each. 

As I wrote in reply, ‘All parents of disabled children are different. What unites us is the experience of having to fight and fight again for their basic human rights. We’ve only become tigers because we’ve had to and would do anything to lay our burden down.’

SEN funding is frankly inadequate. In 2019 the Education Select Committee forcefully criticised existing provision with one MP calling for ‘a transformation, a more strategic oversight and fundamental change to ensure a generation of children is no longer let down’. But this is impossible with the endless circulation of ministers and political initiatives which are, I’m afraid, more often performative than effective, offering photo ops but little more. And with massive pressures on local authority budgets, it is hard to know how or when these issues will be resolved.

But if we don’t resolve it, if we just let things drift, if we ignore these problems, we don’t deserve to call ourselves a civilised country. Certainly, the damning report by the United Nations Committee on the Rights of Disabled People should shame us all. 

12.

So, what can we do?

‘Diagnostic overshadowing’ is a useful term in health care. It means that the clinician is so mesmerised by the disability that he or she fails to notice the actual issue. I think something of the same applies in education.

The fact is we have got a long way to go before we treat learning-disabled children and young people as individuals, with their own strengths, their own challenges, their own needs.

Two things are required.

First: Listen to the families. We are the people who know the young person best. But all too often we find ourselves side-lined, sometimes by people who don’t know our children, and who may be less informed about the realities of learning disabilities than we are.

Second: Listen to our children. Some learning-disabled people are very articulate, others less so, but educators need to develop a way of listening to them, looking at them, engaging with them, above all respecting them, and discovering what it is they need to flourish. It’s an art as much as a science but it is essential.

And it is here, I think, that we need to rethink the concept of ‘inclusion’.

We tend to think that ‘inclusion’ simply means sending disabled children to mainstream schools and that retaining special schools is the opposite of ‘inclusion’. While I think including disabled children in the mainstream is often an excellent idea and that there are many ways of making it work better, real inclusion means something much deeper.

It means insisting that learning-disabled children have the same rights as any other child.

 It means recognising that there is no substantial difference between learning-disabled and non-disabled children, even if some of their day-to-day needs are different.

 If inclusion means anything it’s that all our children matter, and little gives a better indication of a society’s health than our ability to be true to that simple mantra.

The theme of this conference is ‘belonging’. But are we sure that all of our children belong? It sometimes feels that children with learning disabilities don’t.

13.

And with that in mind, I’d like to conclude by suggesting three key principles that we should adopt in thinking about learning-disabled people, in schools, colleges and the world at large.

First, it’s time to be realistic. While I understand the wish to be positive, to emphasize the remarkable things that some learning-disabled people can do, if we deny the realities of intellectual impairment—Joey’s lack of speech, his limited comprehension, his lack of physical coordination, and so on—we will further exclude and devalue people like him with the most acute needs. This shouldn’t be an excuse for pessimism or hierarchy. But if we don’t deal with the realities, we will continue to let such people down. It’s time to get real.

Second, we need to rethink our hierarchy of values. In a world without God and little faith in politics, along with the erosion of shared social responsibility and the championing of the individual, we value intellectual ability above everything: above community, above care, above friendship, above love, even. And this, Joey has shown me, is a terrible mistake. Because while I value the life of the mind enormously—I really do, I absurdly do—it’s clever people like us who do harm, not learning-disabled ones. Certainly, Joey has taught me that there are many worse things in the world than being learning disabled and I wish those dreadful words—‘idiot’, ‘moron’, ‘retard’ and all the rest—were no longer acceptable as insults and disappeared in that place where other historic terms of abuse are thankfully buried. ‘There are more things in heaven and earth than are dreamt of in your philosophy’, says Hamlet, and I wish we remembered that more often.

Finally, we should get serious about human rights. Every child, every person, however disabled, however different, however particular, has a right to a decent, safe and healthy life—including an education—and we must stop trying to evade that responsibility. Surely, a society as rich, as successful, as powerful as ours can ensure that it grants its weakest members the same rights as it grants the strongest. Why was it such a fight to ensure that Joey had a decent education, but by comparison so straightforward for his non-disabled sister and brother to have one? Why does the system throw so many roadblocks in the way? Why do we treat learning-disabled people so differently from the rest? When are we going to right this wrong?

And that is the question that our society has still not adequately answered. But while it remains unanswered, our loved ones, our beautiful children and young people, will linger outside in the cold: ignored, neglected and forgotten.

And this is what I hope you will embrace in your schools and your classrooms, your governors’ meetings and your staff rooms. But, also, in your homes, with your families and in the world at large.

Learning-disabled people have as great a claim to human value as any of us. The sad fact is we have let them down for far too long, and things need to change.

Ladies and gentlemen, it’s in your hands.

A Hard Place by Patrick Kelly

It’s only proper to start with a declaration of interest: Patrick Kelly is my much-loved brother-in-law and what follows is, no doubt, informed by that fact. But, by any standards, his first novel, published last year, is a remarkable achievement.

For many reasons—maybe I didn’t want to be disappointed, maybe my bedside table was groaning already—it took me a while to get round to reading A Hard Place. And noticing its stern title and austere cover—a man staring out at a forest of cranes in a Northern Irish dockyard—made me think that it would be a challenging read: worthy, no doubt, and informed by lived experience, but not very entertaining, even a bit of a slog.

I couldn’t have been more wrong.  At the heart of The Hard Place is an extraordinarily touching love story which, like lots of love stories (Romeo and Juliet, indeed!) concerns love across an unbridgeable divide.  The novel tells of an Oxford educated middle-class young man who goes to Northern Ireland in the early 1960s to assist in the decision-making process of where to build a new university. There David meets and falls in love with the flame-haired Catherine, a ferociously independent and very striking junior academic from the nationalist community.

Both figures are drawn with brilliant skill: we see how his privileged background has failed to prepare him for the social and political complexities of Northern Ireland, but also how, for all her spirit and energy, she is trapped by the quicksand of her home, with eventually, tragic consequences.  We sense how his love for her is driven by a search for redemption, for acceptance, for a second chance, but also how that love all too easily feels like the latest manifestation of English cultural appropriation.

It’s an infinitely nuanced tale, thick with the intricacies of Irish politics (eventually, to popular outcry, Derry is rejected as too politically scarred to be the site of the new university and Coleraine is chosen instead), but it’s also a brilliant satire about the shenanigans of the English education elite and the shady compromises of Stormont.  But so also is it driven by passion and desperation, sexual desire and repression, and a strange combination of stodgy food and endless drinks, laughter and youthful partying, and the grim faces and repressed violence of the marching season. There’s even a wonderfully atmospheric account of the young Van Morrison playing in a club.

But looming over it all, is the landscape of Northern Ireland: the grey, poverty-stricken cities (especially Derry, or Londonderry as the Unionists call it), but also the dazzling beauty of the green countryside, the grey-washed skies and the yellow, sometimes even tropical, sandy beaches, all drawn with delicacy, affection and subtle realism.

The novel isn’t perfect (what novel is?): occasionally the satire slips into stereotype, and I felt that too many chapters end with one of the characters storming off into the night, but this is an amazing achievement: brilliantly researched and plotted, entirely readable and very enjoyable: infinitely touching, vivid and alive. What else can we ask from a novel?  

Why it’s time to stop calling people 'idiots'.

What do we think about the way otherwise impeccably liberal organisations resort to the word ‘idiot’ so often?

The recent announcements that the Birmingham Rep is presenting a show using Spitting Image puppets called Idiots Assemble, that Nottingham Playhouse and Stratford East are staging a new play entitled Village Idiot, and that The New European is publishing a ‘bookazine’ entitled Bloody Idiots are just the latest examples. Two plays at the National Theatre used the same term unchallenged recently (and one, which elsewhere championed the rights and dignities of physically disabled people, happily called people ‘morons’) and it pops up wherever you look.

We believe that this tendency should be challenged.

Why do we care? Well, above all, because we’re both parents of young lads with learning disabilities: Joey (26) has no speech, epilepsy and severe cognitive impairments, and Harry (15) has Down’s syndrome and less profound but significant issues. For centuries they would have been labelled ‘idiots’ (Harry might have been called a ‘Mongolian imbecile’) and both would have suffered dreadful discrimination as a result.

We recognise that very few people would call our lads ‘idiots’ today (although ‘retarded’ and ‘handicapped’ and worse are still heard) and we’re not saying that everyone who uses the word is a bigot, certainly not the editor of The New European or the Artistic Director of the Birmingham Rep. What we do feel is that the word serves no real purpose, reflects unconscious bias and has outlasted its usefulness.

The word itself has a curious history. Taken from the Greek word for a private person who played no role in public affairs, it increasingly conflated a lack of education with intellectual impairment. Thus, when Macbeth describes life as ‘a tale told by an idiot’ he means a story spoken by someone with no social status whose intellectual powers may be limited as a result. Indeed one scholar has argued that everyone outside the tiny number of educated gentry and nobility would have been considered an ‘idiot’.

It was in jurisprudence that the word first developed its modern meaning with courts establishing whether an heir had the intellectual capacity to manage his estate (the management and proceeds of an ‘idiot’s’ estate would revert to the Crown for his lifetime, much to the Crown’s profit). Wordsworth’s Idiot Boy (1798) reflected Romanticism’s interest in the innocence of the intellectually disabled, but it was the massive programme of institutionalisation in the mid nineteenth century that really cemented the word’s modern meaning.

Thus, the Royal Earlswood National Asylum for Idiots opened in the 1850s and others with similar names quickly followed. Then in the 1880s John Langdon Down came up with his Ethnic Classification of Idiots, and the Idiots Act of 1886 shifted responsibility for ‘idiots’ away from the family and onto the state. An ‘idiot’, then, was a person who could not live independently because of his or her cognitive disabilities and, consequently, was best confined to an asylum of one kind or another.

By the turn of the century, with the dominance of eugenics in the social sciences, ‘idiots’ were regarded as the lowest category of the intellectually disabled (see the ‘Steps in Mental Development’ from Virginia in 1915 above) and supposedly posed a ‘social menace’. Soon a toxic collection of scientists, intellectuals, journalists, feminists and politicians set out to stop them from reproducing, and ‘idiots’ were increasingly deprived of their basic human rights, packed off to live in ‘special hospitals’ or ’colonies’, sterilised across Scandinavia and the United States, and murdered in their tens of thousands in Nazi Germany.

1945 did not bring an end to such discrimination, however, and until the 1980s people like our lads endured dreadful neglect and abuse in specialist institutions. And still they face endless challenges: their life expectancy is limited by a health service that too often fails to engage with them, many are confined to Assessment and Treatment Units and cannot come home, and even the most fortunate need their parents to fight continuous battles to secure for them their most basic human rights.

‘Steps in Mental Development’, in Mental Defectives in Virginia. A Special Report of the State Board of Corrections, 1915.

And this is the essential background to why we don’t like the word ‘idiot’.

We have found that people are surprisingly touchy—angry even—when we object to its use, with even the most liberal minded complaining that we’re trying to censor them or that this is ‘political correctness gone mad.’ But people who rightly object to the use of similar language from the dreadful history of racism, sexism and homophobia seem oblivious to the similarly dreadful history of learning disabilities.

One of the most common arguments is that today the word simply refers to people who do ‘idiotic’ things and are not up to the job: language evolves, we’re told, and we’re being picky, over sensitive even. But the awkward fact is that the meaning of the word hasn’t fundamentally changed, for our lads, too, can’t hold down much in the way of jobs and they too sometimes do ‘idiotic’ things. And so, if, as is sometimes claimed, ‘idiot’ doesn’t mean limited intellectual ability, what on earth does it mean?

This, of course, reflect a deeper question. Unsurprisingly perhaps, progressive intellectuals hail intelligence as the most important quality a person can have—‘The unexamined life is not worth living’, according to Plato’s Socrates—and tend to despise its opposite, or at least relish such stupidity as an expression of naked humanity. But it’s the underlying note of mockery that really hurts. It’s almost as if the worst thing anyone can be is an ‘idiot’, whereas we know that the vast majority of people with intellectual impairments are kind, warm-hearted, decent people who make the world a better place. It’s not a lack of intellectual capacity that progressives should rail against: it’s acts of dishonesty, corruption, cynicism and cruelty—often carried out by highly intelligent and capable people.

We feel that calling people ‘idiots’ isn’t just offensive, it distracts us from the real problems.

Who is prepared to stand alongside us and our lads?

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Written with Ramandeep Kaur