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

Need, not diagnosis: Towards a more realistic language and understanding. The Michael Lewis Inaugural Lecture, LSBU

I was honoured to be asked by Professor Martin to give this lecture and very grateful to Michael Lewis and his wife, Janina, as well as everyone at London South Bank University, for their generosity and hospitality. 

I will admit, however, to deep-rooted impostor syndrome.   I’m no scholar.  I have no paid academic perch, no PhD.   The best I have is a degree in English literature from a chilly university in East Anglia, but I’m not sure if that counts.

What I do have, though, is extensive lived experience.  My lovely second son, Joey, now 25, has no speech, intractable epilepsy and severe learning disabilities.  Here are some pictures.

He has a big smile and an infectious laugh but needs help with the most basic of life skills: changing his clothes, cooking his dinner, going on a bus, brushing his teeth, toileting and the rest.  He can say ‘no’, yes’ and, delightfully now, ‘cup of tea’ and, communicates with a mixture of very simple Makaton and persistence. He is much loved by many, and generates huge joy, but there is no denying the severity of his learning disabilities.   

And this experience is central to what follows.  For the fact is being Joey’s dad has changed my life.  I’ve become a campaigner for the rights and dignities of learning-disabled people, written plays and articles about the subject, appeared on the radio and chaired KIDS, a superb national charity supporting disabled children, young people and their families. 

It has also challenged many of my most deeply held assumptions about the worth of intelligence itself, and helped me rethink the values that I was brought up to cherish.

I’ve spent the last two years writing a book.  The Golden Smile — still unpublished — is an attempt to show how changing attitudes have led to changed lives, both for good and ill, from the Greeks to the present day.  It’s made me understand that it’s impossible to support people with learning disabilities without a clear understanding of the culture that surrounds them.   The two are intimately related. 

And that is the issue, and the many contradictions that it throws up, that I want to look at tonight.   For I think better ways of understanding the subject will provide the basis for better lives, not just of learning-disabled people, but for all of us. 

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Let me start with a simple contradiction: the way the process of diagnosis and labelling hasn’t always helped.   

It was in the late eighteenth and early nineteenth centuries that intellectual disability emerged as a distinct category, with ‘idiots’, as they were increasingly called, being seen as a specific subsection of humanity, requiring specialist education, support and care, while also prompting questions about the nature of their condition, and to what extent they could be accepted into the category of the human. 

But this wasn’t always the case.  As Simon Jarrett shows in his magisterial study, Those They Called Idiots, learning-disabled people in Georgian London were absorbed into the general population.  And, as Chris Goodey and others, have argued persuasively, it’s difficult to discover evidence of learning-disabled people before the arrival of such taxonomy.  It’s not that they didn’t exist, it’s that they weren’t widely recognised as a distinct group — except, importantly, in law, where their capacity had an impact on money and property. 

By the late 19th and early 20th centuries, however, and influenced by the pseudo-science of eugenics, learning-disabled people were increasingly seen as an existential threat, what was called ‘a social menace.’

They were divided into categories, with ghastly terms like ‘imbeciles’, ‘the feeble minded’, ‘morons’, ‘mental defectives’, and the rest, all indicating varying degrees of mental impairment. These categories then dictated accommodation in asylums, institutions and colonies, with the most disabled placed as far away as possible.  The melancholy fact is that Joey wouldn’t have been welcome in the high street.

And soon, responding to an entirely unscientific fear of the heritability of learning disabilities, thousands of people across America and continental Europe were forcibly sterilised, leading, ultimately, to the horrors of the Nazi persecution, which caused the deaths of as many as 250,000 disabled people.

If only this had been the end of it.  But eugenic thinking was hardly discredited.  Indeed, in 1943 William Beveridge slipped out of the gallery of the Commons where he was watching the debate about his famous report to reassure the ladies and gentlemen of the Eugenics Society that his plan was, quote, ‘eugenicist in intent and would prove so in effect.’

And soon new names appeared: ‘subnormality’, ‘retardation’, ‘mental handicap’, ad nauseam, with further provision dictated — and rationed — by such labels. 

And, of course, the process continues.   

Now, I recognise that identifying and naming the cause of the impairment can help in practical ways and I’m certainly not anti-science.  But I often find myself quietly content that Joey — who is what is beautifully called a SWAN: a syndrome without a name — doesn’t have a label.  What matters is ensuring that he has a good life, not what words can be used to describe his apparent defect.  In other words, a label doesn’t guarantee a better life.  At times, it’s done the opposite.

It’s just the first of many contradictions.

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A second can be found in the way that artists and intellectuals — many of them self-proclaimed progressives — have responded to learning-disabled people. 

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

Thus, Bernard Shaw insisted that ‘the only fundamental socialism is the socialisation of the selective breeding of man’, under which ‘we should find ourselves committed to killing a great many people whom we now leave living, and to leave living a great many people whom we at present kill’.  ‘Eugenic politics’, he insisted, ‘would finally land us in an extensive use of the lethal chamber’, and ‘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, D.  H.  Lawrence described ‘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’ saying 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.’  It sounds like a suburban Treblinka.

Perhaps most shocking of all is Virginia Woolf’s diary entry for 9th January 1915, where she writes that:

‘On the towpath we met & had to pass 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 that lot, it seems.   

The fact is that learning-disabled people have been the subject of continuous prodding by intellectuals for centuries, with classical philosophers from Plato to John Locke wondering whether they should be numbered among the human.  And this line of inquiry persists to this day.

Thus, the geneticist Richard Dawkins, in response to an enquiry from a woman about what to do if she found she was carrying a foetus with Down’s, replied ‘abort it and try again.  It would be immoral to bring it into the world if you have the choice’.  He denied eugenicist intent, but it’s hard to understand what he meant by ‘immoral’ in such a context.  He also tweeted that it’s wrong to ‘conclude that eugenics wouldn’t work in practice’, insisting that ‘it works for cows, horses, pigs, dogs & roses.  Why on earth wouldn’t it work for humans?’

An even more egregious example is Peter Singer, Distinguished Professor of Bioethics at Princeton, who has argued that human beings like my Joey who fail to develop speech should be seen as less than human, insisting that ‘If we compare a severely defective human infant with a nonhuman animal .  .  .  we will often find the nonhuman to have superior capacities, both actual and potential, for rationality, self-consciousness, communication and everything else that can plausibly be considered morally significant.’

Singer was involved in a public meeting with the remarkable philosopher Eva Feder Kittay, the mother of a woman with profound learning disabilities.  Kittay showed up the shallowness of his arguments, above all that he knew virtually nothing about learning-disabled people themselves.  When he tried to reassure Kittay that he had no desire to hurt her feelings, she went to the heart of the matter:

‘That’s not what it is about.  For me, it’s not what I am experiencing, it’s what your writings might mean for public policy.  That's what concerns me.  And that’s not just about my daughter.’

Her warning about dissociating philosophy from the everyday realities of care is essential, especially, perhaps, in the groves of academe. 

Such contradictions can be seen in less exalted places too: when England lost the European football final, Twitter was ablaze with progressives condemning the ‘racist morons’ who were blaming the black players who’d failed to score the penalties.  Racism is bad, it seems, but learning-disabled people are fair game.

Progressive should recognise the experience of learning-disabled people and acknowledge their own historic prejudices in this area.

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A different kind of contradiction can be found in the 1960s theory of ‘normalization’.  This posited the unremarkable if essential idea that learning-disabled people should be able to live normal, ordinary lives, and has had a huge impact.

Normalization wasn’t quite as new as its proponents claimed.  What was novel was its scale and ambition: this wasn’t just a better way of looking at vulnerable people, it was a comprehensive approach to lives, services and culture.

Normalization, however, begs various questions.  The first is that, despite protestations to the contrary, it was, especially in Europe, seen in the context of hospitals, which could offer, I quote, ‘an intensive training environment which, whilst not normal in itself, will nevertheless help to normalise people’. 

Then, many of the definitions of ‘normality’ reflected the values of the time.  Thus, one (male) champion declared that ‘residents are encouraged to undertake the roles they would have in a normal family, the women doing the domestic chores and assisting in the day-to-day care of the children and the men going out to work’.  ‘Normality’ is as much of a social construct as the ‘abnormality’ it was trying to displace, it seems.

Third, under normalization, learning-disabled people were expected to lead lives like the rest of us, with little interrogation of the ways that ‘normal society’ needs to change, not just in terms of attitude and understanding, but legislation and public expenditure. 

Perhaps normalization’s most contentious assumption was about what learning-disabled people actually want.  Central to the identity of many is a defiant unconventionality, with a rejection of many of the norms of mainstream society: after all, why should they be like everyone else?

For the fact is, learning-disabled people come in all shapes and sizes, and any generalisation is counterproductive.  (Like all of us, one might add.)

In other words, the blanket notion of ‘normality’ should be resisted if we’re to engage properly with the needs and lives of this very loosely defined and heterogeneous group. 

Or maybe we just need to think more carefully about what we mean by ‘normal’.

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‘Normalization’ was in many ways a reaction against the dreadful conditions discovered in institutions for learning-disabled people.  The accounts are stomach churning: in America, Willowbrook, Letchworth Village and the Fairfield Hospital in Oregon; In Britain, South Ockenden, Normansfield or the Ely Hospital in Cardiff, to name just a few.   

Let one stand for many.  Thus, in 1972, the journalist Geraldo Rivera made a television documentary about Letchworth in upstate New York.  He wrote of the young girls he found in one of the buildings.  ‘Many of them had physical deformities; most were literally smeared with faeces’, and concluded with words that should shame us all:

‘But they were, after all, just little girls.  And those little girls — just like your sister or daughter — wanted to be held and loved.  When we walked into the wards, they came towards us.  I wanted to hold them, but it was too frightening.  They were like lepers, and I was afraid they would somehow infect me.’

Rivera could have been at the liberation of Dachau, and it’s hardly surprising to read his impassioned cry: ‘We’ve got to close that goddamned place down!’

And indeed, as a result of such justified outrage most of these places were closed down and the people who lived there were moved.   

But it’s here that another contradiction emerges.  Because all too often residents were torn from the places they’d lived in for their entire lives and abandoned with not enough help or support in the so-called ‘community’.  There are dreadful stories of people being moved into flats with just one black plastic bag containing all their worldly possessions.  In other words, it’s not good enough to close bad institutions down if you don’t have suitable accommodation for the people to move into.    

What’s more, the move from the institutions didn’t stop the violence and cruelty chronicled so harrowingly in Katherine Quarmby’s Scapegoat.  Indeed, learning-disabled people living lonely lives in the community seem particularly prone to such attacks.

It’s not even 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 private care companies making vast profits running homes and communities which are frankly not fit for purpose, with dreadful stories of neglect, cruelty and abuse.  You know the names: Winterbourne View, Whorlton Hall, Muckamore Abbey, ad infinitum it seems.

And then, of course, there are the ATUs and other deeply unsuitable hospital settings where some of the worst violations of human rights have taken place, often defended as a response to so-called ‘challenging behaviour’.  

In other words, it’s not good enough to declare ‘institutions bad, community good’.  Instead, we should understand what it is that individuals require, and create accommodation and support which is responsive to their needs.   

I know this from experience.  When Joey’s epilepsy became dangerous, it was obvious he couldn’t live at home anymore: after all, epilepsy at night unsupervised can be fatal.  His mum and I had to shock the local authority into taking his needs seriously and place him in an epilepsy specialist centre, to which he is still attached.  There are not many of them.  I dread to think what would have happened without it.

We should attend to such contradictions.

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Normalization was followed by a more radical idea: that learning-disabled people should shape their own lives and plot their own future.  With its mantra of ‘nothing about us, without us’, self-advocacy argues 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 hard to establish a definitive history of self-advocacy (and needs a self-advocate to write it) but the spark was struck when a conference included learning-disabled delegates for the first time.  When, the next year, a group was discussing what to call the emerging movement, someone called out: ‘I’m tired of being called retarded — we’re people first’.  And the inaugural People First conference soon followed.  It’s now a worldwide movement.

Self-advocacy means different things in different contexts, but every self-advocate believes that a learning-disabled person is a person first, not a condition who should be responsible for all decisions about their lives. 

They want to live and learn alongside other non-disabled people of their own age, be allowed to make mistakes, and not be constantly constrained or labelled: ‘Label jars, not people’, as the motto runs.

The fact is, however, that self-advocacy — probably the most significant advance in this whole dark history — has its own contradictions, especially when it comes to people with severe learning disabilities, where self-advocacy by its very nature privileges the most articulate. 

Because, of course, some learning-disabled people don’t have a physical voice at all.  Some can communicate their wishes with assistive technology and others have elective mutism.  But for people like my Joey, who has only just mastered ‘cup of tea’ at the age of 25, insisting that he should speak up for himself is unrealistic and counterproductive. 

I have seen these contradictions in action when well-meaning social workers have asked for Joey’s views on his future.  They provide forms which ask the person to complete a sentence beginning with an ‘I’: ‘I want to do this’, ‘I want to live like that’, and so on. But I’ve sometimes had to stifle my laughter, not at the nobility of the aspiration but the gap between it and the reality.  Because when I write ‘I want to live with my friends’, I’m actually writing on Joey’s behalf.  I’m speaking over him — at best a form of ventriloquism — and the opposite of what self-advocacy should be all about. 

And here, of course, we run into another contradiction: if you ask Joey what he wants to eat he will inevitably sign ‘spaghetti’ and ‘sausages’.  But we know that he, like all of us, needs five fruit or veg a day.   If we insist on it for ourselves, we should insist on it for people with learning disabilities too. Anything else is, frankly, neglect.

In some ways these contradictions simply reflect the range of impairments covered by the blanket term ‘learning disability’.  But there is, I believe, a way through and that is to rethink self-advocacy as a continuum: that is, we’re all dependent on others to help with things that we find difficult, and no-one is a self-advocate in everything they do. 

And so I think we should seek a less binary definition of self-advocacy.  For Joey’s presence at a meeting about his future is a speech act in itself, and should be understood as such.  He may not be speaking in the ordinary sense of the word, but his beating heart and living breath make him much more than just a name on a sheet of paper.

Some self-advocates object to the voice of parents like me, especially when their offspring are over 18.  But while some parents present obstacles, whether from a lack of imagination, an excess of negativity or unresolved feelings of grief, they shouldn’t be too heavily criticised if they don’t always get the balance right.  They’re not necessarily infantilising their loved ones if they worry about their welfare.  For it is love, overwhelming love, that drives them and there are far too many stories of family members being excluded from critical issues resulting in catastrophic consequences to calmly hand over all responsibility to professionals, however decent and committed they may be. 

What’s more, parents have often led the way, from Judy Fryd founding Mencap in the 1940s, to Sara Ryan’s inspirational campaign for justice for her beautiful son, Connor, more recently. And there are so many others.   

In conclusion, then, while the movement to ensure that learning-disabled people can enjoy full human rights is immeasurably strengthened by the voices of the learning disabled themselves, we should recognise its inevitable limits when it comes to articulating the wishes of people with the most profound disabilities. 

Anything else is, quite frankly, ableist. 

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Further contradictions can be found in the ‘social model’ of disability.

This insists that instead of talking about deficit, we should accommodate difference.  Above all, that we should stop regarding disability as pathological and understand it as something that society needs to engage with and adapt to accordingly.  In other words, that people are disabled by the world, not by their impairment.

The social model has had a massive impact.  I’ve certainly found it useful when I’ve challenged the authorities about why Joey is excluded from opportunities that his non-disabled brother and sister take for granted.   As I see it, the social model reminds us that a well-organised society upholds the individual’s rights as a matter of course,

For all its strengths, however, it begs some questions.

First, it fails to acknowledge the full extent of some disabilities, including the medical issues that are sometime comorbidities: Joey’s epilepsy is just one example.  And, of course, learning-disabled people face perfectly ordinary medical issues of their own, which are too often overlooked 

The problem is that even well-meaning health professionals sometimes let them down.  This came clear in the Covid-19 crisis when learning-disabled people initially appeared lower down the triage order and weren’t prioritised for vaccination among vulnerable groups. And, appallingly, they suffered much higher death rates than any other group.

Second, the social model is more useful with physical than learning disabilities, especially severe ones.  It’s one thing to insist on ramps to make buses physically accessible, but quite another to insist that bus drivers learn Makaton.  Accommodating different kinds of minds isn’t necessarily straightforward.

The social model has led to a further debate about whether we should regard learning disabilities as an impairment at all, with some insisting that people without evident physical disabilities aren’t, in fact, disabled. Others say that we should be talking about ‘learning differences’, not ‘learning disabilities.’ 

I’m afraid I have a problem with this.  Which is not to say that someone like Joey is only disabled: after all, he has a definite personality, settled preferences and a highly developed sense of humour.  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’s dishonest to say anything else.

One of the chief consequences of the social model is ‘inclusion’—the idea of including learning-disabled people in all aspects of everyday life: education, housing, healthcare, and so on.   This is widely taken for granted as a good and some argue that there should be no specialist provision at all.

And while I recognise the nobility of these aspirations and agree that inclusion can be hugely valuable (for the non-disabled as much as the disabled), I’m not convinced that such a one-size-fits-all approach is sensible in practice.  Apart from anything else, some learning-disabled people want to live, study and hang out with other learning-disabled people.  Joey’s best friends all have learning disabilities of one kind or another and we should be alert to that.

Indeed, those who insist on absolute inclusion in education should also insist that severely learning-disabled people should go to the best universities.  I once had a ding-dong with the Dean of a posh American university who proudly insisted that her institution was ‘fully accessible’: ‘not for people with profound learning disabilities’, I pointed out, not because I thought they should accept people like my Joey, but because I thought they should be honest. 

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For good reasons, learning-disabled people and their families are often encouraged to move away from the ‘tragedy’ model.  And, certainly, there are many positives in the experience.

I encountered this on Twitter of all places.  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 with the simple, ironic message: ‘So terrible being the dad of a learning-disabled young man.’ I thought nothing more of it until I returned to my phone and saw a steady stream of notifications.  I was especially struck by the scores of pictures of families with a learning-disabled relative doing happy, ordinary things: climbing mountains, walking on a beach, bouncing on trampolines and posing in pyjamas, all laughing, smiling and having infectious, glorious fun. 

Each carried its own message of mock gloom (‘another day of misery’; ‘awful sadness’; ‘such dreadful hell’) to which I replied with mock sympathy: ‘Oh how awful’; ‘So grim’; ‘Thoughts and prayers’, etc.  For three frantic hours, I could hardly keep up, and when I woke up on Saturday it was still going strong (23,000 ‘likes’).  By Monday morning I was on Radio 4 talking about what had happened and what it meant.

It was clear that Joey and I had struck a chord.  Because families of learning-disabled children are so often made to feel their situation is desperate, my tweet encouraged them to demonstrate that they don’t just love their person to the moon and back, but he or she has taught them more about life, love and laughter than anyone could possibly imagine. 

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’ which got a huge response.  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 almost 90,000 ‘likes’ and 2000 ‘retweets’ and was, for a moment, ‘trending’.  The point is that people were—if only for a moment—opening their hearts and minds to learning-disabled people and recognising their value.   It was a genuine political moment.

But while I love the positivity that my tweets have unleashed, I think we should be careful, and not just because Twitter is an echo chamber desperately prone to confirmation bias.

The first reason is because parents and siblings shouldn’t be bullied into stifling negative emotions.  There are many times when Joey’s family find him infuriating and we sometimes compare the trigger points, the things that we find especially challenging. Acknowledging, exploring and forgiving ourselves for these responses is essential not just for us, but him too.

The bigger danger about such boosterism is that it creates hierarchies within learning disabilities.   

As an example, Mencap has recently rolled out an awareness campaign called ‘MythBusters’.   This aims to discredit the idea that learning-disabled people are incapable, and profiles a number of learning-disabled people who are achieving great things.  This, it’s felt, will help the public think of learning-disabled people in a more positive way.  So far, so good.

The arts often do something similar, producing uplifting stories of learning-disabled people overcoming the odds to do remarkable things, but usually without reference to the social context which is where the real battle happens.    

The danger with all this is that it creates a hierarchy within learning disabilities, with the ‘MythBusters’, the exceptions, at the top and people like my Joey at the bottom.  It unwittingly suggests that people only deserve support if they’re capable of achieving great things.  The law of unforeseen consequences, I suppose.

The underlying problem is the very notion of the meritocracy.   We all think wealth, power and opportunities shouldn’t be inherited but earned.  But not only is this an illusion, it doesn’t help people who fail these tests. 

As I often say, every family of a learning-disabled child or young person is different; what unites us is the endless struggle for fundamental human rights.  One example are the countless forms where you have to emphasise the negative in order to secure the support that’s needed: ‘masterpieces of bureaucratic hurtfulness’ as I once put it.  And hardly a day goes by when I’m not asked to give advice to a family struggling to get help.  Love is the easy bit, love is the drive but in a society like ours it doesn’t conquer all .   

And so what we need, I think, is a new template, a new social contract which recognises the undeniable fact of difference, and does everything in its power to provide help to those who need it most. 

And that could allow for a more open-hearted declaration of worth.  I recently expressed my condolences to the mother of a learning-disabled young woman who had died of SUDEP (sudden death by epilepsy).  Her daughter, I said, was infinitely valuable, as valuable as anyone alive, and had changed the lives of everyone she came into contact with.  For the real nightmare is how easily such people are regarded as secondary.  As if, as the Nazis would have said, they were leading ‘lives unworthy of life.’

Instead, we should start ‘valuing people’, as the 2001 learning disability report optimistically put it.  But that’s 20 years ago and we’re still not there. How long do we have to wait?

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These many contradictions can be found in disability politics, where virtue signalling, the photo-op, have become all consuming, and too often disconnected from the realities on the ground.   

A recent example is the Down Syndrome Act, which sailed through the Commons pretty much uncontested, as if our elected representatives thought that it was an easy win which would make them look good.  The Lords did better but couldn’t block it.

Dr Liam Fox’s Private Members’ Bill was championed by a small group of active parents (supported by some fairly unsavoury characters on the anti-abortion right), and the campaign emphasised all the remarkable things that their offspring could do.  Ironically, its supporters also insisted that people with Down’s have more severe medical and educational needs than others and require specialist medical and educational provision.  Having your cake and eating it, it seems.

The best legal minds have shown just how ineffective this legislation will be in practice.  But what really concerns me is that the Act champions one fairly small group (40,000) on the basis of their extra chromosome, and ignores the needs of the other almost 1.5 million learning-disabled people, many of whom require far greater support.  I desperately want people with Down’s to have better lives, but the truth is I want everyone with learning disabilities to have better lives.   

The essential point is that we should provide support according to need, not by diagnosis, and ensure that we embrace the full range of abilities and impairment and avoid unnecessary division or hierarchy.

The Act is symptomatic of a political culture which is so busy signposting that it ignores the facts on the ground. It fetishizes individual achievement and divides people into categories. It’s opened a Pandora’s box that will be difficult to close.    

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So, what conclusions can be drawn from all these contradictions?  Where do they leave us?

Well, the other day a young woman with Down’s Syndrome tweeted proudly that she could cook her own dinner.  And, no question, we should celebrate such achievements.  But not everyone can do these things — Joey certainly can’t.  Pointing this out is not a betrayal of the cause, not a counsel of despair, it doesn’t prove that I’m a ‘pedlar of doom’ (as one of the Down Syndrome Act champions called me).  Rather, it’s an insistence that we accept people for what they are and not insist they be something different. 

For we are at the moment, I believe, in danger of turning our backs on the people who need help the most, and to whom we owe the most profound duty of care. 

And that should worry us. 

I think we need to develop a more honest discourse around learning disabilities.  A more human one, in fact. One which acknowledges the reality of fragility and weakness, even as it celebrates achievements and independence. One which embraces all our children — the disabled alongside the non-disabled, the clever alongside the less clever — and remembers the dementia that so many of us will face in old age — as I see in Joey’s 90-year-old grandfather, my lovely dad.

All of which is perhaps what my friend the remarkable Welsh vicar John Gillibrand means by ‘the theological model of disability’: a way of thinking about learning disability which is unjudgmental, non-challenging, not interested in categorising, open to individuality and difference, and, above all, the unique value of every human being.  And I say that as an atheist.

This, I think, could have two consequences:

The first is that by engaging with the individual realities, support can be useful, empowering and humane.  We can help people, not by trying to change them, not by telling them to be better, not by imposing on them meaningless aspirations, not by expecting them to achieve things, but by accepting them as they are, in all their particularities. For learning-disabled people are our brothers and sisters, our sons and daughters, our mothers and fathers. They are us and we are them. It’s time we stood alongside them, and gave them the help that they need.     

And that could help the rest of us too. 

How?

Well, I sometimes think that looking at the world through the lens of learning disabilities is a bit like the Brechtian ‘alienation effect’. Don’t worry, but this is an approach to aesthetics in which the familiar is exposed as strange, and the odd starts to look entirely natural.  And so, by engaging with the realities of severe learning disabilities we can question our own devotion to productivity, rethink what we mean by the meritocracy and, above all, reassert fundamental human value. 

And so maybe, just maybe, people with learning disabilities can teach us how to live better lives.  We certainly need help from somewhere.   

It’s time to be more honest.  It’s time to be better. 

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I’d like to end with a passage from Maureen Oswin’s extraordinarily powerful The Empty Hours, a 1971 study of disabled children living in institutions, where she has a heartbreaking conversation with the five-year-old Jason.

Strictly speaking, Jason isn’t learning disabled, but little says more about the situation faced by so many learning-disabled people today.  It’s a plea for a better world.  

‘Cerebral palsy had given Jason permanently withered limbs and slurred speech’, Oswin writes.‘Family rejection had given him a never-eased homesickness.  Social provision gave him a hospital to live in.  A lively mind gave him an insatiable curiosity.’ 

‘Why can’t I purr like a kitten? He asked.

This was fairly easy to answer.

‘Why did my mummy eat me?’

‘Eat you?’ This was startling.

‘Yes, you told me yesterday I was in her tummy when I was a baby. How did I get there, did she eat me?’ After a while this was sorted out to our mutual satisfaction.

‘Where do I keep my tears when I am not using them?’

This was a little harder. He may well wonder where they came from, for he had known more tears than most of us.

‘Why do I get sad such a lot of times?’

All the pat answers from past experience with inquisitive infant children could not rescue me very comfortably from this question.

‘Have I got to stay all my life in this hospital?’

What answer now? I thought of all the brave reforms through social history, the early crude attempts to help the destitute and improve Workhouses, houses and factories. There were all the Committees, Members of Parliament, journalists, civil servants, the charities, the wealthy and the poor, whose opinions and ideals have shaped English social history over the last 200 years. There were Children’s Acts, Housing Acts, Education Acts, Mental Health Acts, the National Health Service, and Acts for Divorce, Criminal Justice and Abortion; there were laws to protect women, homosexuals, animals, immigrants, house purchasers, landlords, street vendors and car-drivers; the twentieth century—the age of human reasoning and compassion. But where did young Jason and his kind fit into this good age of reform and broad thinking?

‘You’re not answering me. Will I have to stay all my life in this hospital? Answer me...’

We still have no proper answers for Jason.  Despite everything, learning-disabled people still come last. 

We have to do better.

Thank you.

The Sound of Silence

‘In the beginning was the Word’, St John asserts boldly, and for centuries we have lived in a culture dominated by the spoken word. It is hard wired into education, politics, the arts and all forms of public life. We’re constantly encouraged to ‘speak up’ for ourselves, for our opinions to be heard, to engage in conversation and dialogue, and such activity is regarded as a minimum requirement for citizenship.

Privileging speech has a long pedigree: thus, Martin Luther despaired of a boy who couldn’t speak and proposed to drown him in the Moldau, while in the early 1800s the French doctor Jean Marc Itard gave up when the feral ‘wild boy’ Victor that he adopted failed to learn to talk. Indeed, classical philosophy from Plato to John Locke has consistently claimed speech as the single clearest indicator not just of rational powers, but membership of the human race itself. 

Astonishingly, this exclusionary tendency is still in evidence, as when the much-lauded professor of bioethics, Peter Singer, claims that those with such limited intellectual capacity that they cannot speak cannot claim moral personhood over and above intelligent non-human animals, or Richard Dawkins’ evident dislike of the intellectually disabled, to such an extent that he advised a woman whose foetus had Down’s Syndrome to ‘abort it and try again’, adding that ‘It would be immoral to bring it into the world if you have the choice.’  

Our best guarantee against the abandonment that these mighty intellectuals suggest, is, it seems, the ability to talk: speak up or else!  For if ‘the unexamined life is not worth living’, as Plato’s Socrates declares, what hope for those who either cannot examine their lives or are incapable of expressing it in language? Thus, the privileged status of speech still offers an oubliette into which those without it can all too easily be consigned. 

So what is it like to be deprived of this fundamental tool and how do we respond to such liminal people, who all too easily slip under the radar and, silent and still, are so easily forgotten? My second son is one of them: Joey (25) has never spoken a word and never will. There are some suggestions—a faintly sounded ‘mumee’ for ‘mum’ and, comically, ‘cupofteee’ for, well, everyone’s favourite drink—but nothing that we would recognise as speech. The fact is, Joey has severe learning disabilities and cannot coordinate the muscles in his mouth needed to make words. His passive language skills are much greater: “Joey, will you get my glasses from the kitchen?”, I’ll ask, and, in moments, he’ll come back with them in his hand, glowing with pride at what he’s achieved. 

Which is not to say that Joey lacks the ability to communicate; indeed, he’s very clear about his immediate needs and, while abstract conversations are impossible, he shares a huge amount through an idiosyncratic use of Makaton signing, body language, eye contact, laughter and smiles. Indeed, those of us who know him well can understand almost everything he’s ‘saying’. He even prompts us to act as his ventriloquist and the joy he takes in knowing that his experiences are being shared is overwhelming. But speech is beyond him.

There are many reasons for non-verbalism, including brain injury, a stroke, psychological trauma, cerebral palsy, elective mutism and severe learning disabilities. And about a quarter of autistic people are non-verbal (or pre-verbal as is sometimes preferred) or with very limited speech. Indeed, I was criticised by an autism activist when I wrote in Byline last year that Joey ‘lacked the capacity’ for speech: the assumption was that he was refusing to speak, whereas the truth is that, despite self-evidently wanting to communicate, he is incapable of speech.

The debates around non-verbalism are complex. There are times when those of us with speech have foolishly offered to be a ‘voice for the voiceless’ and the learning disability charity Mencap was much criticised for its strapline of being ‘the voice of learning disabilities’. While the impulse is understandable, noble even, it is perhaps better to become amplifiers of the desire to communicate what is already there, rather than speaking over people whose wishes do not manifest themselves in speech. But it’s not always easy.

One of the key developments in disability politics over the last fifty years has been the self-advocacy movement, with its insistence that the learning disabled should be given the opportunity to speak for themselves and for their wishes to be heard and acted on. Indeed, ‘Speak Up!’ is one of its key mantras. How this applies to someone who has no speech is problematic. One way through, I have discovered, is to recognise that presence itself is a speech act. And so I always insist that Joey attends all meetings about his future: it’s not that I expect him to suddenly start talking, it’s that his very presence articulates the indisputable fact of his existence.

Indeed, I increasingly think our views of disability are too binary and that instead of imagining a simple distinction between the verbal and the non-verbal, we should recognise the vast range in verbal ability, not just between people, classes, intellectual ability and educational background, but at different stages in the lifecycle. Certainly being with my very old, almost entirely silent father reminds me that learning disabilities are universal. Even the most articulate stop speaking eventually.

The meritocracy, in its eagerness to dispense with inherited wealth and status, insists that the most capable will rise to the top and reap the rewards of their talent and hard work. But I suspect non-verbal people like Joey offer another perspective. Above all, they show us how to look and how to listen, how to engage with people who are inarticulate, who lack confidence in speaking up, whose culture or background inhibits or prohibits such self-expression. It’s not enough just to encourage the articulate to speak, for if the ‘social model of disability’ shows us anything it’s that it’s we who must change and develop new forms of communication, and new kinds of listening. And this, I suggest, is essential if our desperately fractured and divided society is to be healed.

I can’t pretend that accepting Joey’s silence has always been easy. Indeed, when I first discovered that he was unlikely to develop speech, I was appalled. I come from a background where everybody talked easily and at length, and I had no idea that there was such a thing as being non-verbal. It seemed impossible, and I had no idea how I would cope. Sometimes at night I used to dream that I was having a conversation with Joey and I would hear a light tenor voice chattering away sweetly, just like the endless conversations I’ve had with my other kids. Slowly, however, and reluctantly, I’ve come not just to accept Joey’s silence, but, ultimately, to embrace it. Indeed it’s transformed my understanding of the world.

This year, on Joey’s birthday, I tweeted a picture of him by the sea with the simple statement: ‘Joey is 25 today. He’s never said a word in his life, but has taught me so much more than I’ve ever taught him.’To my amazement this went viral (trending at #4 for a moment), garnering 86,000 likes and almost 3000 retweets, and was, I gather, doing the same on Facebook and Instagram. While we all know that Twitter is a snake pit, it did suggest a moment of hope when the fact of non-verbalism was speaking loud and clear to large numbers of people, the vast majority of whom were entirely verbal. Such a paradox showed how severe learning disabilities act as a kind of ‘alienation effect’, turning our blithe assumptions on their head, and suggested that we should perhaps hesitate before we declare yet again that the ability to speak lies at the heart of what it is to be human.

There is more in heaven and earth than is dreamt of in our philosophy.

That tweet

Twitter, as everyone who uses it knows, is a cesspit: a place to get shouted at by strangers, bark wildly into the void and fight off anonymous trolls.  So imagine my surprise when a jokey little tweet of mine set off an enormous wave of love, pride and the very best in humanity.

It was the afternoon of New Year’s Day, and I was lying on the sofa with my 24-year-old son, Joey, and we were giggling at one of our routine jokes. I took a few quick selfies of us having a cuddle, was pleased with one of them and tweeted it 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 returned to my phone and saw a steady stream of notifications: likes, comments and retweets. But I was especially struck by the literally hundreds of pictures pouring in, of families with a learning-disabled relative doing happy, ordinary things: climbing mountains or walking on a beach, bouncing on trampolines and posing in Christmas pyjamas, all laughing, smiling and having infectious, glorious fun. 

Prompted by my original tweet, each carried its own pithy little message of mock gloom: ‘another day of misery;’ ‘awful sadness;’ ‘such dreadful hell,’ and so on, and I decided to reply to each and every one with mock sympathy: 'Oh how awful;’ ‘So grim;’ ‘Thoughts and prayers,’ and so on. For three frantic hours on Friday evening I could hardly keep up. And when I woke up on Saturday it was still going strong. By Monday morning I was on the Today programme talking about what had happened and what I thought it meant.

While I don’t put much store by Twitter ‘likes’ and ‘retweets’, it was clear that Joey and I had struck a chord. Because families of learning-disabled children are so often made to feel that their situation is deeply tragic, my tweet, I believe, encouraged them to show that they don’t just love their child to the moon and back, their child has taught them more about life, love and laughter than an outsider might expect. And they wanted to express that in public.

I know this from my own experience. 

Joey, my second son, has severe learning disabilities and intractable (if medically managed) epilepsy. He’s not autistic, nor does he have any of the recognised genetic syndromes which often cause learning disabilities. He has no speech and communicates with a limited vocabulary of simple Makaton signs, pointing fingers and a golden smile. He’s an endearing young man (I would say that, wouldn’t I?) who, for the most part, brings out the best in people. But he requires constant care and guidance to manage the simplest of tasks. His learning disabilities are not to be underestimated. 

Joey was small at birth and developed very slowly, missing all the usual milestones. He started out in mainstream nursery and primary school, but it was soon clear he would be better helped at a special school. Then, following an alarming spike in the gravity and frequency of his seizures, and with legal help and dogged persistence, his mum and I managed to persuade our local authority to fund a place at the wonderful St Elizabeth’s Centre in Hertfordshire, a specialist centre for people with learning disabilities and epilepsy: he started at the school, went on to the college and is now happily in supported living nearby. It’s been a terrific success and we’re so grateful to the brilliant teachers and carers there who’ve given him so much. 

When he was young, the suggestion was sometimes made that Joey must be a ‘sadness’ to us all. ‘How could this have happened to me?’ I’d ask myself, self-pityingly. And although we were never advised to ‘put him away and forget about him’ (as would have happened in earlier generations) we constantly encountered tilted, concerned faces of, dare I say it, somewhat manufactured sympathy, especially from people whose job it was to manage his future.

In the process, his mum and I discovered that the only way to get a learning disabled child what he needs is to emphasise in all the endless paperwork just how ‘bad’ he was at everything, a failure and a danger to himself and others. Parents revel in their children’s achievements, but those of us with learning-disabled children are forced to do the opposite, focus on the things they’re not good at and share—in crushing detail—our anxieties about their future. 

And we didn’t have to do undergo this once and move on; no, we’d have just got one year sorted when we had to get cracking on the next, and the torture would start all over again. And, with local authority budgets cuts to shreds (the pandemic and Brexit will, no doubt, make things worse), the financial cost of Joey’s provision was made all too clear to us. 

The struggle to secure for Joey appropriate education, health and social care tore chunks out of us and such continuous negativity—and many families have experienced much worse—can be soul destroying.  There are alarming statistics about the impact of a disabled child on employability and poverty, as well as mental health and family life, but these are more to do with the struggle to ensure appropriate support than actually living with the child. There are some terrific organisations which do everything they can to help (I’m proud to be Chairman of KIDS, an amazing national charity which makes a real difference) and many of the professionals in this area are kind, dedicated and supportive.  But if you can judge a society by the way it treats its weakest members, modern Britain all too often fails this simple test.

The pandemic has again revealed the inequalities in shocking ways. Not only have there been terrible stories of Do Not Resuscitate orders being arbitrarily applied to learning-disabled people (who, for a moment, were right down the triage list for intensive care), but it’s been reported that mortality rates from Covid-19 are six times worse for learning-disabled people than for the general population. Yes, some learning-disabled people have associated comorbidities, but nobody ever died of learning disabilities. Instead it’s the result of a social and health care system which still, tragically, gives the distinct impression that other lives have more value. And although progress has been made since the darkest days of the last century, there have been far too many stories of bullying, neglect and entirely unnecessary deaths in schools, care homes and NHS run hospitals and ATUs (Assessment and Treatment Units) for us to rest on our laurels. 

Joey’s experience of the pandemic has had its own challenges.  When the first lockdown happened I was deeply conflicted: on the one hand I wanted to whisk him away from his supported living house, wrap him up in a big blanket and spend months watching his favourite Pixar films on a loop with him. On the other, I knew that he was just as safe where he was: my daughter was attending school every day and who knows if we were any better at shielding than Joey’s rota of very professional and dedicated care workers. But not seeing him for three months was brutal, to put it mildly, and the day my partner, our 12-year-old daughter and I visited him at St Elizabeth’s was one of the most moving days of my life.

What’s so often forgotten is just how creative, enjoyable and splendidly anarchic sharing a life with a learning-disabled person can be. And while I reject the pieties of ‘special parents get special children’ or that ‘God sends disabled children to make the parents better,’ I know that Joey has had a hugely positive impact on me and the rest of his large and frankly overachieving family.  I couldn’t be prouder of the influence he’s had on his elder brother, Laurie, and younger half-sister, Bea, who are much kinder, more intuitive and empathetic than I ever was in my youth. Clever as they both are, they know that some things are more important than being brainy. Indeed, learning-disabled people sometimes bring families together in intriguing and unexpected ways.  

Loving Joey is the easy bit. He’s no tragedy.  It’s fighting for his future which hurts.

The fact is that we live in a culture in which people are valued by their productivity, by how much they earn, by the nature of their work, above all, by how intelligent they are.  It’s a culture I was brought up in and, I’m ashamed to say, probably still partly subscribe to. But it’s a way of thinking which takes us nowhere, as the pandemic has so clearly shown.

Every learning-disabled person is different, and many are brilliantly active people who can, quite rightly, speak up for themselves. But Joey’s disabilities are severe: he won’t earn a salary, won’t pay tax and, I’m sure, won’t marry or have kids. He doesn’t have the necessary capacity to vote and, by conventional standards, won’t ever be a full member of society. But Joey has shown me (and can show you) something else, something deeper and more important. And that is the indivisibility of human worth, and a robust rejection of simplistic notions of what makes a human being. For history shows us that allowing productivity to determine value is the start of the road to hell and that the moment we champion the ‘normal’ over the ‘individual’ is the moment we give up on the human altogether.

I’ve been reading up on how learning-disabled people have been treated in the past and it’s pretty distressing.  It’s a dreadful (largely forgotten) history of institutionalisation, segregation, compulsory sterilisation and, in Hitler’s Germany, murder. What’s peculiarly disturbing is the way that so many otherwise progressive figures—including Bernard Shaw, Marie Stopes, Virginia Woolf and DH Lawrence—saw learning-disabled people as a danger to society and actively campaigned for their exclusion. And even today, pregnant women are warned of their ‘risk’ of giving birth to a child with Down’s Syndrome, as if that was the worst thing that could happen.

Mainstream culture either ignores the experiences of our children or relegates them to the outer circle of hell. Dramas are all too often simplistic in their depictions of heroism or tragedy, while neglecting the impact of the rest of society on such lives. 

The prejudice is evident in the language we speak, and every time I hear someone called an ‘idiot’, a ‘moron’ or a ‘retard,’ a little part of me dies: these words were used to justify appalling cruelties in the past and have no useful meaning today, especially as insults of people you simply disagree with. 

Parents of learning-disabled kids, whatever their political persuasion, are often radicalised by the experience. Yes, we’re sometimes cynical, even sweary, and fight like Trojans to get our children what they deserve. But we’d gladly lay our weapons down if we could. 

Our determination is driven by love, nothing else. That’s not to say it’s all easy: there are challenges, frustrations and griefs to navigate on the way.  But raising a learning-disabled child really isn’t an unremitting tragedy. In fact, a particular mixture of pragmatic acceptance, raucous laughter and undying love rings through our houses.

What this Twitter storm displayed is that families like mine don’t need ‘thoughts and prayers.’ What we’re asking for is inclusion in all aspects of life, and practical, high quality and easily accessed support. Above all, I think, we want society to embrace and welcome our kids as equals. As Joey’s then six-year-old sister, once said to a friend who was alarmed by his lack of spoken language: ‘You don’t have to be scared of Joey, he’s just disabled.’  

And so what this life-affirming stream of gorgeous, beautiful photographs showed me is that thousands of families with learning-disabled children across the country are determined to bear witness to the unquenchable, inexhaustible and overflowing love they feel for their children, however different, however ignored, however misunderstood.  

The learning disabled are the last great neglected group. It’s just possible that the big-hearted and defiant response to my jokey little tweet suggests that things just might change.

It’s a moment of hope.

My son, Harry. A guest blog from Ramandeep Kaur

I am the mother of three wonderful boys. I am also a first generation British Asian. My parents came from India in 1969 and are Punjabi Sikhs. My middle son, Harry (13), has Down’s Syndrome and, like everyone with Down’s, is learning disabled. 

But disabilities, especially learning disabilities, are taboo in my culture.

We don’t talk about disabilities and hardly acknowledge that people with learning disabilities exist. But the reality is that my son and many others like him, are living in our communities today, and we need to have a conversation about this and how we accept them.  British Indians have to change our attitudes towards learning disabled people.

Acceptance has to start from birth. When a son is born, the celebrations are huge and often extravagant. Indians, as everyone knows, love to party! The gifting of sweets to all your friends and family, blessings at the Gurudwara (the temple) and the endless traditional ceremonies. The whole community shares in the joy that this new life brings. But what happens when your baby isn’t quite ‘perfect’? Who wants to celebrate this ‘simpleton’, this ‘backward’, this ‘poor soul’? The fact is there is a real lack of compassion. There is a sense of loss and quiet mourning.

For my Harry, the celebrations were simple and low key. There were no sweets, no parties. No acceptance.

Then the blame game starts. I was told it had happened to me because I was unmarried, I was living with a white man and I didn’t conform to the customs and beliefs of my culture and faith. Of course, a medical explanation wasn’t enough for the gossip merchants to get their teeth into. They had already made up their mind that I had done something awful and that Harry’s learning disability was a punishment for that. 

The feelings of rejection and isolation soon overshadowed any feelings of joy I had for my beautiful boy.

Over the years, it’s become clear to me that many in my community see Harry as a burden. A financial and emotional disaster. I’m expected to keep him hidden out of sight. I couldn’t possibly be proud of him, could I? ‘You won’t be able to get on with your own life now. What about his poor brothers, what will happen to them?’ I’ve had to listen to all this, and it fills me with rage when people can’t see beyond his disability. Harry is my son, not an alien creature. He has a condition that we know so much about now and yet we choose not to educate ourselves but to listen to mistruths, old wives’ tales and rumours instead.

So why do so many people in my community regard him with such negativity? Why would someone tell me I shouldn’t visit a pregnant friend in case I passed on the curse to her child? What is it that brings about this sense of fear? 

There are some deeply embedded cultural ideals that my community simply cannot detach itself from. The notion that we must all strive for perfection, for academic success, for the beautiful dutiful wife and to continue with our customs and traditions, no matter how outdated they have become. The idea that we must do better than the previous generation. We are obsessed with status and what others in the community think about us. Our children must become doctors, lawyers, engineers and failing that, pharmacists! We have set the bar so high that when a child like Harry comes along, he is immediately rejected.

‘Izzat’, the concept of honour and prestige, is important to Indians. Having a learning-disabled child damages that. The shame and embarrassment are palpable. Prejudices and bias are completely exposed, and it becomes impossible to see this child as anything other than a disappointment and failure.

Yet my Harry is not a failure. He is an absolute delight. He has the most incredible talent for music and drama. He can recreate a Bollywood dance scene without missing a beat. He loves horse riding, has been skiing and has even ridden a Yak when we visited India. We have never hidden Harry away. We are loud and proud of him and can see beyond the academic achievements and celebrate all the other amazing things that he can do. He is loved and adored by his brothers even when he is being a stroppy teenager! 

Fortunately, Harry was accepted and loved by my parents from the minute they set eyes on him. My mum’s younger sister had a learning disability, so acceptance came easily for them, and I’m grateful for their support. But there were times when I needed more than just a lovely curry cooked up by mum. I needed someone to go to the hospital appointments with me, to attend the support groups, to help me make sense of the annual review meetings at school, to simply hold my hand when things got tough. Because they do get tough, not all the time, but there are battles that we have to fight to access the right support and services for our children. I just needed more support.

I sometimes wonder if the lack of visibility of people with learning disabilities, not only in our communities but in the books we read, the tv shows we watch, the Bollywood films we love, influences how Indians view them. I’m reminded of a Hindi film released in 1964, titled Dosti, (Friendship), which had a blind lead character and a physically disabled character, but again no learning-disabled people in sight. In one scene, the lead character sings a beautiful song which loosely translated goes:

You who walk away,

Turn back and look at me,

I am a human being,

Just like you.

Simple words but maybe we can learn from Dosti.

I hope we can start to bring about a change in attitudes. I am certain many of the views that are held by Indians are no different to those in other cultural groups. But they are definitely more amplified in mine. 

Our children can live fulfilling lives with the right level of support and that has to start from when they are born. Families like mine need to feel they belong in their communities and our children have the right to be welcomed into the world with all the pomp and ceremony that is afforded to others. 

For the last 13 years, I have felt very much like an outcast. Shunned and neglected by a community that was part of my identity. I hope that others don’t have to experience what I did. The world can often be a lonely place for families of learning-disabled people. Let’s embrace them and give them the love and care they deserve.

Memories of a Great Teacher

You only need one good teacher, it’s sometimes said, and I was lucky enough to have had a great one.

By the time I met her in 1979, Margot Heinemann (1913-92) was a legendary figure of the British left, not just because of her youthful romance with the charismatic young Communist, John Cornford, but for a long life dedicated to teaching, writing and the cause. Others can tell her story better than I can, and that’s certainly not my purpose here.

Instead I want to give some sense of how this remarkable, sometimes intimidating, deeply committed and astonishingly intelligent woman shaped not just my intellectual and creative development, but the way I think about life as a whole. It’s a personal account, if one streaked with politics.

Although Margot had studied at Cambridge in the 1930s, she spent most of her life ‘in the real world’ - in her many years with the trades union movement, as a teacher at Camden School for Girls and at Goldsmith’s in South London. I realise now that I was so lucky to have been at Cambridge during the few years when she was there: it gives me, however tenuously, a link with a remote, but extraordinarily significant movement.

It must have been in the autumn of 1979 that I first attended Margot’s lectures at Cambridge University on how Brecht read Shakespeare.  I was interested in the relationship between politics and drama, but my thinking was dominated by narrow aesthetic questions.  Mrs Thatcher had just come to power and was rolling out her extraordinarily divisive agenda, but I was more interested in working out how to become a theatre director than worrying about the distribution of wealth.

I have a vivid memory of my first sight of her: a robust, silver-haired woman speaking in a very crisp voice with tremendous precision about drama and politics.  Here, immediately, was what I’d been looking for: a way of combining a sophisticated appreciation of aesthetic form with an understanding of political context and content. It was only when I realised that she wasn’t just spouting theory, but had actually lived and breathed this stuff, that I realised what I was confronted with. I soon read everything I could by her and attended as many of her lectures as I could. I instinctively knew that she had something that I needed.

I was unhappy with my Director of Studies who seemed very narrow and introverted, and I plucked up the courage to drop her a note to see if she would ‘supervise’ me.  I can’t remember how many terms she taught me, and I get confused between supervisions and social visits, but I do remember her teaching.

Margot’s notes in the margins of my essays were always precise, kindly, but took no prisoners.  My favourite was when I said that ‘in the late plays Shakespeare had lost touch with the people’: she circled the words ‘the people’ in red and wrote, ‘Dear, be careful not to use the phrase the people in the way Hitler would have done.’ I don’t remember anything politically partisan, and if she ever referred to the ‘Marxist classics’ it was with humour: ‘Odd, isn’t it, that Marx can be useful when looking at The Comedy of Errors?’  

Nor was she ‘politically correct.’ She knew that good and bad, progressive and reactionary, altruistic and self-interested can be found in all sorts of people and groups. And she’d seen the realities of the thirties all too clearly to labour under any illusions about the sanctity of the poor and oppressed. You start from where you are, not from where you’d like to be.

Margot used to attend the (now legendary) Shakespeare in Performance seminars, and I think it was here that she made the greatest impact on me.  What I saw there – with my new friend, the 20 year old Tilda Swinton – was a sophisticated reaction to the Shakespeare establishment, and the broader cultural fix as a whole.  Margot’s experience, breadth of vision, attention to detail and underlying political analysis, swept all in its way.  We all - undergraduates, research students, distinguished fellows, even George Steiner - knew that we’d met our match. She was intolerant of trendiness, and critical of theoretical thinking which ignored the text. But so also was she open minded and forward thinking, dynamic and provocative. Again, it was this combination of moral commitment with scholarly attention which was so inspiring.

At the heart of Margot’s teaching was precision. I remember once arguing that Shakespeare was a ‘reactionary’ and cited all the obvious arguments. Her reply revolved around two key principles: 

1. See things historically. Just because Shakespeare wasn’t calling for revolution didn’t mean he was a reactionary. And without a sense of historical distance all literary approaches (and theatrical ones) descend into prejudice and fantasy. 

2. Read the text carefully and with a feel for its contradictions. Her insistence on detail, on the meaning of the words, on the particularity of what is written, continually challenged sweeping statements. 

Above all, Margot was showing us that if you read an old text with some grasp of history, it might reveal itself in ways which were more alive than you could possibly have dreamt of. These are inconvenient truths in a culture – and an industry – obsessed by the contemporary and suspicious of contradiction, but I can’t forget them.

She also used to come to my productions. She saw my student production of Measure for Measure when it played a short season at the Almeida.  I think she approved, but she didn’t like my Pompey being barefooted. Of course she was right: under the influence of Peter Brook, I’d caricatured the working class characters. I think she was most impressed with my production (with Tilda) of Athol Fugard’s Statements, a brilliant play about interracial sex in apartheid South Africa. She was rather dismissive of my ever so arty production of All’s Well That Ends Well (quite rightly, I suspect) but more approving of my modern dress, thoroughly Brechtian production of The Comedy of Errors.

On graduating I Margot and I used to correspond about all kinds of things, but above all Brecht and Shakespeare. I remember being flattered when she asked me to read an early draft of her essay on King Lear and the World Turned Upside Down.  I can’t remember what I told her, and I can’t imagine my 23 year old opinions would have been of much use, but I don’t think she was simply trying to flatter me.  

I was then amazed that she took seriously my suggestion that we should do a book together on Brecht on Shakespeare. I remember we even went for a drink in Hampstead with the great Brecht scholar, John Willett, to talk about the subject.  She set me to cataloguing every mention of Shakespeare in Brecht which I promptly did. Margot’s health then went downhill but I’ve still got the stuff on my computer and may well try to do it one day.

And it was in London – away from Cambridge, scholarship and the sixteenth century – that I began to sense something of her life before I met her, and also the depth and sophistication of her politics. I had known about John Cornford’s famous poem dedicated to her (below), but I think it was in London that I started to hear her talk about the Popular Front, her generation’s fight against fascism, as well as her work with the miners and the Communist Party – all against the background of Thatcher rampant.

In the mid 1980s I directed new plays at the Traverse in Edinburgh. The first was Peter Arnott’s White Rose, about Stalingrad (starring Tilda and Ken Stott) which had a fascinating discussion about oppositional politics – the balance between the charismatic star and the patient, unglamorous, worker – and I remember Margot attending a Q&A.  I think Peter’s point was that the star was just a star, and quite possibly right wing to boot. Margot tried to bring more balance to the discussion, and I remember thinking that Cornford’s ‘star quality’ might have been at the back of her mind.

I then directed Tilda in Man to Man by Manfred Karge, an avant-garde piece about a woman who’d survived the German nightmare by disguising herself as her dead husband. It was a full on blast of post modernism, and Tilda was astonishing.  Margot saw it at the Royal Court and admired what we’d done but was suspicious of its artistic experimentation. Although this wasn’t the last thing I did with Tilda, Margot’s challenge was important: Tilda went off to do (brilliant) art films with Derek Jarman and I tried to work out how to bring some of the political insights I’d learnt from her into the bourgeois theatre I was going into.

I used to go and visit Margot in her flat in London, really for extended seminars disguised as dinners: I’d try to get her to talk about all the stuff I was interested in. I frequently felt stupid, not because we were talking about subjects I didn’t know about (she would just tell me the facts if I didn’t have them), but because my understanding of life and the world seemed shallow.  Two moments in particular:

1. I remember asking Margot why she hadn’t left the Communist Party in 1956. She didn’t snap at me – which I’d feared – but she did look fierce (‘not that bloody question again,’ I could hear her thinking) and said that ‘you don’t abandon your family, however awful they are’.  The rights and wrongs of that are endlessly debatable and I’m not interested in coming to a judgment, but it struck home.  

2. On the day of the Brighton bomb in 1984 I went to see her for dinner.  It was during the miners’ strike and there had been a lot in the papers about a growth in violence. The IRA didn’t declare immediately that they’d done it, and I remember saying to Margot when I arrived: ‘I just hope it isn’t the miners.’  ‘Of course it wasn’t the miners,’ she snapped, ’you just believe what you read in the papers.’ It was the crossest I’ve ever seen her, and I nearly left. I’m glad I didn’t, because it gave me an insight into a part of her life which I’d never really known about.

Margot’s challenge could be robust. But I don’t resent it, not for a moment, and am grateful to have encountered the depth of her beliefs and the enormity of her experience. Clever young people should be exposed to such things: it’s part of how they learn.

What I never really grasped was that these were, of course, the last years of her life.  My final memory is of her lying on a reclining chair while I asked her endless questions about all my favourite subjects. She closed her eyes and said ‘dear, that’s all in the past.  What are you doing now?  That’s what matters.’  She joked that she was fed up of living in the sixteenth century and she meant it. Like all the best teachers, Margot knew that she learnt from her pupils. ‘What matters is young people.’

I’ve had moments of wondering whether the Margot I knew in the last 12 years of her life was somebody set free. What do I mean by that and how could I possibly know?  I suppose it’s something to do with a sense of her alone at last, a grand figure from another age, and no longer the genius’ moll that she sometimes joked she was. What’s more I felt she was involved in a radical and independent minded recasting of the whole socialist project in the face of the end of the Soviet Union and the winding up of the British party. Her remarkable poem, Ringstead Mill (below), looks forward as much as back. Discovered in her papers after her death, Tilda read it at her memorial service: ‘Change is their memorial / Who have changed the world.’

Eric Hobsbawm described Margot Heinemann as ‘one of the most remarka­ble people of our time and testament to its indestructible hopes’, and certainly her life­long com­mitment to working for a better world was exemplary. With the revela­tions first of Stalin’s crimes and then the collapse of the Soviet Union, the cause to which she dedicated her life seemed discredited, and her genera­tion of communists were (and still are) vilified, above all for their enduring loyalty to the cause. I prefer to remember her statement, a year before she died, of her politi­cal position: ‘The challenge is to take up the shamed, blood-stained cause of the Left and make it what it was meant to be, and not what 65 years of misuse and error have made of it. That’s where I stand.’

Her funeral was astonishing with the great and the good of the British left attending. Hobsbawm gave the eulogy. John Cornford’s famous poem to her (below) was printed on the Order of Service. We listened to a Bach Violin Suite and a recording of Paul Robeson singing Old Man River. I remember noticing an elderly man at the back standing erect and saluting as the coffin slipped away to the sound of a choir of Welsh miners. He must have been an International Brigadier from her youth and the sight spoke to me of a completely different Margot than the one I had known. And yet, I realise now, the extraordinary thing about Margot was that the real world, with all its battles and its losses, its injustices and its despair, its struggles and its triumphs, was there all the time – even when talking to privileged young people like me about Shakespeare.

So, you see, Margot changed me, and she changed my world. I think of her often and wonder what she would feel about what I’ve been up to since she died. Her answer might challenge me, it might even hurt, but it would provoke me into thinking more clearly, not just about the life of the mind, but about the still turning world in which we live.

And that, for me, is what real teaching is about.

*

To Margot Heinemann

Heart of the heartless world,

Dear heart, the thought of you

Is the pain at my side,

The shadow that chills my view.

The wind rises in the evening,

Reminds that autumn is near.

I am afraid to lose you,

I am afraid of my fear.

On the last mile to Huesca,

The last fence for our pride,

Think so kindly, dear that I

Sense you at my side.

And if bad luck should lay my strength 

Into the shallow grave,

Remember all the good you can:

Don't forget my love.

John Cornford (1936)

 *

*

Ringstead Mill

Stranger whom I once knew well,

Do not haunt this house.

Sorrow's but a ravelled thread,

To draw back the active dead, 

Nor is pleasure mutable

Such as smiled on us.

Stranger whom I once knew well,

Do not haunt this house.

Idle and low spirits can

Take your name and face:

Old green sweater, battered coat,

Coal-black hair and sleeves too short.

Though I know the living man

Finished with this place,

Idle and low spirits can

Take your name and face.

Here we laid foundations where

Never walls were built.

Faded is the fireside glow,

Things we knew or seemed to know 

Blown around the empty air, 

And the milk is spilt.

Here we laid foundations where

Never walls were built.

And the hard thing to believe 

Still is what you said.

With a bullet in the brain,

How can matter think again?

All things that once live and move 

Endlessly are dead.

And the hard thing to believe 

Still is what you said.

So from these deserted rooms,

Even memory's passed.

As your closely pencilled screed

Grows more faint and hard to read,

So our blueprints and our dreams,

Torn from time are lost.

So from these deserted rooms,

Even memory's passed.

Mountains that we saw far off,

Sleek with gentle snow,

To the climber’s axe reveal

Ice that jars the swinging steel,

Armoured on a holdless cliff

With the clouds below —

Mountains that we saw far off,

Sleek with gentle snow.

Time bears down its heroes all

And the fronts they held.

Yet their charge of change survives

In the changed fight of our lives —

Poisoned fires they never dreamed of 

Ring the unrented field.

Change is their memorial

Who have changed the world.

Margot Heinemann (1960?)

Reunion 2020: A Photo Essay

2020 was an awful year for all of us. For some it was utterly heartbreaking.

But for me and my family there was one beautiful day, when we were reunited with Joey at the St Elizabeth Centre in Hertfordshire after three long months in lockdown.

The great photographer, Edmond Terakopian, was there to catch it.

Let’s hope 2021 brings more joy.

Those They Called Idiots

In his masterpiece, The Making of the English Working Class (1963), the great Marxist historian, EP Thompson, explained that he was seeking to rescue the labouring poor from the ‘enormous condescension of posterity.’ And with this exhortation the boundaries of history expanded exponentially to include a vast range of subjects usually overlooked, especially in terms of gender, ethnicity, religious belief, sexual orientation, class and so on. 

But there is one group which has been almost entirely ignored: namely, people with what we would now call ‘learning disabilities.’ This is partly because of a paucity in the documentary record but more significant, perhaps, is the feeling that such people aren’t very interesting: after all, who wants to read a book about ‘idiots’ when there are so many geniuses to study? But as anyone who loves a learning disabled person will know, if anybody needs rescuing from the ‘condescension of posterity’ it’s this loosely defined group who’ve so often been mocked and abused, neglected and ignored, segregated, sterilised and murdered, all for the crime of lacking the cognitive powers that the rest of us take for granted.

There are many challenges involved in such a history, but one of the biggest is that the language keeps changing. As Simon Jarrett’s title suggests, ‘those they called idiots’ may not be the same people we would call ‘idiots’ today, just as the other terms—'imbecile,’ ‘moron,’ ‘cretin,’ ‘mental defect’, ‘retard’ and so on—all mean something different to when they were first coined.  Indeed, they carry such negative connotations that they’re unusable in modern professional practice—if all too common in everyday speech. 

Jarrett’s exceptionally readable—and beautifully illustrated—history describes in meticulous detail the way that this group has been treated by a largely uncomprehending world. ‘Idiots,’ he explains, were subjected to a gradual process of institutionalisation in the 200 years between the French Revolution and the coming of Mrs Thatcher; but also that this ‘great incarceration’ was followed by the ‘great return’ when, finally, the worst of the asylums and long-stay hospitals were closed and their inhabitants—many of whom had never lived anywhere else—were moved back into ‘the community,’  where many still live, often with inadequate support and company.

Jarrett emphasises the idealism that informed the early days of the ‘idiot asylums’ but explains how this gradually gave way to something much darker as the learning disabled came to be seen as an inchoate menace to the social order. He also describes the emergence of the eugenics movement, with its conviction that ‘the race’ could be improved if only ‘mental defectives’ were prevented from reproducing, leading to segregation, sterilization and, in Nazi Germany at least, state sponsored murder.  

Although Jarrett’s account brings us up to the present day, it’s particularly strong on the eighteenth and nineteenth centuries, and I’m especially grateful to him for two key insights. The first is into the relatively relaxed and tolerant attitudes of Georgian England, where, it seems, the ‘idiot’ was accepted: subject to mockery and jokes, certainly, but also recognized as part of society and celebrated as an expression of those frailties which are fundamental to the human condition. As such, Jarrett argues, the learning disabled—many of whom held down jobs and lived alongside the rest of the population—avoided the categorisation, exclusion and persecution that was such a feature of the worst that soon followed.

His other great insight is into the relationship between nineteenth-century colonialism and the disabled mind, with humanity being divided into three distinct ranks: at the top sat civilised white men, capable of rational thought and, of course, European; next stood barbarians—Chinese, Indian etc—who lived in cities and organized societies but were irrational, greedy and cruel; at the bottom were nomadic savages who seemingly lacked any powers of reason or intellect, ‘idiots’ who couldn’t manage their affairs and had no rights over the territories where they were found. Thus, in championing the great achievements of the European Enlightenment, the very idea of ‘idiocy’ was used to describe ’inferior races’ in ways which are still deeply damaging.

Jarrett’s subtitle is ‘the idea of the disabled mind from 1700 to the present day’ and he tracks with considerable care the way that the learning disabled have provided the rest of us with a contrast group against which we can define ourselves. And he shows in the most elegant way imaginable that the evolution of this idea and its many perversions has not just had incalculable impact on those with learning disabilities, it’s shaped the assumptions that inform our most deeply held beliefs. 

The history of learning disabilities matter to us all because in our response we can see a mirror for who we are and what we care about.  We should be grateful to Simon Jarrett for telling this complex, compelling and frequently troubling story with such tremendous clarity and style. I can’t recommend this wonderful book highly enough, even if—especially if, perhaps—you have no lived experience of the subject.

Love, Learning Disabilities and Pockets of Brilliance

Every parent of a learning-disabled or autistic child is different. What unites us, however, is the experience of fighting for our child’s inalienable human rights and basic dignities. We don’t want special treatment and detest the notion of our children being ‘special’ or having ‘special’ needs. All we want is what we expect for our other children. It shouldn’t be too much to ask. 

Sara Ryan—whose wondrous new book, Love, Learning Disabilities and Pockets of Brilliance, is out next month—knows this better than most. In July 2013 her gorgeous 18 year old son, Connor Sparrowhawk, drowned in a bath in an NHS Assessment and Treatment Unit in Oxford. After an exhausting campaign for justice, an Inquest eventually concluded that his death was ‘avoidable’ (he had epilepsy and shouldn’t have been left alone in the bath) and not, as previously claimed, ‘of natural causes.’ But ‘Justice for Laughing Boy’ (#justiceforLB) wasn’t finished and Sara and the many people who worked alongside her didn’t just ensure that those responsible for Connor’s death were named, they showed up a systematic failure to investigate the deaths of hundreds of learning-disabled people and pointed to still broader issues in the way that our society engages and tries to support this very loosely defined group.

Sara described all this in heart-breaking detail in her previous book, Justice for Laughing Boy (2017). And, although she inevitably refers to Connor in her equally important new book, she turns her attention to the way the powers that be—social workers, local authorities, big charities, educationalists, health care professionals and other specialists—interact with learning-disabled and autistic people and their families, and she details the way the system so often ignores the most important point of all: that we’re all human beings with our own individual frailties, emotions, and anxieties, and that those who regard our children as problems to be managed, tragedies to be endured, or defectives who require special treatment, are failing in their most basic duties, and are part of a culture which denies learning-disabled and autistic people the chance of a decent, happy and rewarding life. 

Sara’s subtitle is ‘How Practitioners Can Make a Difference to the Lives of Children, Families and Adults’ and it should be compulsory reading for anyone training to work in this field. It would certainly have prevented many moments of grief in my struggles for my learning disabled son, Joey. After a ‘brief historical whizz through’ of the appalling mistreatment of learning disabled and autistic people in the past, Sara shows the way that these attitudes all too often shape contemporary practice. And she itemises with exhaustive, at times exhausting, patience the endless nightmares—both big and little, trivial and catastrophic, institutional and personal—faced by families, especially mothers, in their seemingly endless struggle to secure a decent life for their loved ones. That this bad practice is so wearily familiar should shock society out of its complacency. And the fact, as Sara emphasises, that progress is so eye-wateringly slow should make us all howl with rage. 

But—amazingly, beautifully, surprisingly—Sara’s book isn’t just critical, and one of the remarkable things is the way she includes so many examples of best practice, where something little—often just a simple human kindness or an act of imagination—made a huge difference. Many of these were collected in response to Sara’s call on Twitter, and, to my surprise, include my own account of paramedics chatting to my young daughter, Bea, about Harry Potter, even as they loaded Joey—in mid status epilepticus—into an ambulance while managing to keep my soaring anxiety under control. But the point is, these ‘pockets of brilliance,’ as Sara calls them, should become the norm, not the exception. Above all, Sara’s simple and straightforward lessons need to be learnt by the large institutions who are so often Kafkaesque in their bureaucratic obscurity, and chillingly hurtful in their impersonality. The situation will only change when everyone involved understands that the biggest problem faced by families like ours isn’t loving and accepting our slightly ‘different’ children, it’s the endless fights to secure for them the simplest things imaginable.

After Connor’s dreadful death and the hugely challenging campaign that followed, no-one would have blamed Sara if she’d put her feet up. What’s astonishing about her new book is that she’s reached out to a large number of other families for their own, mostly less traumatic but very real, experiences and alerted us all to the all-conquering truth that learning-disabled and autistic people are just as human as the rest of us. I know Sara Ryan a little—Assistant Professor Dr Ryan, as we now must call her!—and I suspect she’ll only relax when the voices of the learning-disabled and the autistic and their families have been heard and acted on. 

Memories in a Pandemic

I was consumed by waves of melancholy driving down the Cut last night.  I spent so many years of my life on that short little road near Waterloo.

And now the pandemic.

Just off the Cut is ETT, the company I founded, which for so many years was my home, my office, my palace with its very own rehearsal room.  Oh luxury. Then the Young Vic, the Old Vic (where my productions of Henry IV and King Lear both played), the NT Studio where I spent six fascinating, challenging, bewildering months in the 1980s learning pretty much everything that matters really. The Jerwood Space where I rehearsed so many plays, including All Our Children, my favourite. There used to be an old church on Short Street (was it called Upstream?) with a great big room which smelt of incense and urine. The Windmill, that pub where I used to drink beneath all those framed pictures of famous, and not so famous, actors and actresses. So many conversations. So many plans.  So many wasted hours.

And taking actors out to lunch at Tas. The Chinese noodle bar for laughter. The old Acropolis where Peter Gill held court over moussaka before it closed down and got turned into an expensive fish restaurant (Live Bait, Peter Hall’s favourite) and is now a burger chain. Diana Quick striding along so elegantly. Vanessa Redgrave and a friend, I don’t know who. Paterson Joseph and Joe O’Connor sharing a dressing room at the Old Vic. The Calder Bookshop where I used to listen to John Calder talking about (his friend) Sam Beckett and I greedily bought copies of Joseph Roth and Stefan Zweig. The Baltic (where I had my 50th birthday and drank too many shots of cherry vodka and my friend made that lovely speech) and the tapas bar on the corner of Short Street where so many plans were hatched. La Barca on the Marsh with Tim and Sam West, and Ultz’s old studio in that building by the station in the corner which has now been pulled down. And back by the Young Vic: The Anchor and Hope. Or is it the Hope and Anchor?  I had lunch with Simon Beale there once and we sank deep into our anecdotage, rambling on about Cambridge, and more times lost, another space of friendship, art and dreams.

Fragments of my life, all torn. All gone.

And now all shut. All closed down.  Shuttered up as the virus passes by.

“The night is long that never finds the day.” Shakespeare

“You can’t step twice into the same river.” Heraclitus

The Saddest Letter Ever Written

The following letter was written in Chicago in 1914 by the mother of a profoundly disabled son to his teacher in an ‘idiot asylum’ in rural Illinois. 

“Will you find out if S— is in need of anything and let me know. Also will you see if his shoes are big enough?  His Oxfords I know are but if his old shoes seem small, wish you would throw them out. I don’t want the child to suffer with his feet. If you will do that for me I will appreciate it very much. I miss him so, and often wonder if those little details are noticed. Wonder if he misses his mama. He loved me so much it seems a pity to put him away.  Is little S— learning to talk or is he just the same?  Sometimes I still have hope for him although I know it is useless.”

As the dad of a profoundly learning disabled son who, likewise, is in (a modern version) of institutional care, it strikes home in so many ways: the polite, almost deferential attitude towards the authorities, with the hope that if you’re polite and friendly they’ll look after your son better; the everyday nature of the inquiries—shoes, feet, and the endless anxiety that these ‘little details’ won’t be noticed; the almost embarrassed nature of the revelation of her mutual love for him and the deep regret that he has been ‘put away’; and finally the hope against hope that he might develop speech and the desperate, humiliating, heartrending acceptance that ‘it is useless’.

100 years later, everything has changed.  But so much remains the same.

[Quoted in James W Trent’s magisterial Inventing the Feeblemind, A History of intellectual disability in the United States. Oxford, (2017)]  

Noli me Tangere: Visiting Joey at St Elizabeth’s

So, yesterday we saw Joey for the first time since early March.

We had to book the session in advance and were told that we’d have an hour and half and that there should be no physical contact. And when we arrived at the St Elizabeth Centre at 11.00 there was a little tent with gloves and masks and cleaning equipment which we approached tentatively.  And suddenly there was my Joey getting out of the car that had brought him from his supported living. I called his name and he smiled shyly, cheekily, distinctively and we wandered over to see him, as the table and chairs were carefully wiped down from the last family visitor by one of his lovely carers, Clare Thackeray. 

Joey has an amazing ability to accept things without getting upset. And as he opened up the bag of goodies that his step mum, Ginny, had bought for him—his usual favourites: waffles, diet Coke, crisps, Jaffa Cakes and, oh best of all! sliced processed cheese—we all started to relax.  We were obediently wearing our PPE (masks and gloves) and as my friend, the extraordinary photo-journalist, Edmond Terakopian, started taking pictures, we joked and smiled and felt so happy to be back with Joey again after all these months.

But we couldn’t touch him: Noli Me Tangere (‘don’t touch me!’), the resurrected Christ says to Mary Magdalene, and I kept remembering the phrase.  Because, you see, Joey has no speech and communication has to take other forms: simple Makaton, smiles and giggles, one-way talking, and glances and eyes and gestures but, above all, in normal circumstances, physical contact: an arm round, a cuddle, a tickle, a squeeze, sometimes even a comic push, these are all how Joey communicates and we all know what to do. And I don’t think I’ve ever known such a strong urge to hug anyone as I did yesterday.

 Soon, Joey got restless and we followed him over to the willow where he and his sister started pulling on the boughs, Bea hanging upside down, Joey tugging and breaking off branches and inspecting them ever so carefully, displaying them like a fish caught on a line.  And then we headed off to the apple orchard—one of Joey’s blissful places, whose apple juice is beyond compare, where the grass is tall and the sun always shines—in a comical procession of Edmond walking backwards up the path really fast trying to focus his Leica (he didn’t fall over: see the picture above), Joey pushing ahead, the three of us trailing behind, up past the apple trees to the little cemetery with the carved crucifix where the nuns and some of the residents have their final resting place. 

It started to drizzle steadily, and we picked our way back through the orchard to the tent. Joey and I sat beside each other and I put my feet up on his lap and we talked (no words,  but lots of communication) about how his Mum and his big brother, Laurie, had visited him the previous weekend and he told me how much he’d liked seeing them. And we talked about Monsters Inc and The Jungle Book and Joey covered his ears when the rain on the canvas started to rumble. And we did high-fives with my carefully gloved hands and I remembered, as I do so often with Joey, that the old jokes are the best.  

But soon Joey decided he wanted to go to another willow tree and Ginny gave Bea an umbrella which she shared with him and the two of them headed off across the lawn laughing in the rain: ‘that’s the shot’, I called out, but Edmond had already caught it brilliantly. See below: the love is palpable, and it’s the definition of inclusion.

And, finally, the time came for us to leave. Clare came back and Joey got into the back and calmly put on his seat belt and we waved our goodbyes and walked back to our car.  And as I turned my back on him I was overwhelmed by great rushing gulps of emotion. Yes, by my love for him and, yes, by all of us being together with him again after all this time.  And, I’ll admit, glancing at my phone, I was touched by the dozens of people who had so quickly responded to a tweet I posted earlier of Joey smiling and laughing as he pulled on that poor willow tree. 

I was struck by the utter strangeness of the whole situation, but there was something else too: the meticulous care, the lightest of touches, the elegance with which St Elizabeth’s had managed this most personal of moments. We weren’t policed but we knew, as I’m sure did all the other visitors, that there are bigger things than our temporary frustrations, that the health of the residents and the staff at St Elizabeth’s is more important than my desperate, yearning desire to squeeze Joey tight and not let him go. 

I’m an absurdly tactile person and this whole thing went against my deepest instincts. But it showed me again that some things are more important than instinct and I only wish our leaders, their special advisers, and so many of our fellow citizens, realised this too. 

As so often—to my mind, at least—Joey and his world reveals the truth.

Photograph by Edmond Terakopian

This article first published in Byline Times

Just Another Bloody Challenge

There is a weary familiarity to families of learning disabled people in this current crisis as we see that yet again their loved ones have been sidelined, ignored or plain discriminated against. 

Steve Broach, one of the leading lawyers in the field, has pointed out that this is the first time in decades that children with special educational needs have no clear right to the level of provision they require. Under new emergency powers, local authorities are now only required to use ‘reasonable endeavours,’ and such softening of the statutory obligations offers cover for any local authority trying to reduce such costs. What’s more, there has been continuing confusion about the position of the learning disabled in triage and the use of Do Not Resuscitate orders; indeed, according to the learning disability academic, Chris Hatton, it’s been impossible to get clear figures on the impact of Covid-19 on learning disabled people, be it rates of infection, tests, hospital admissions or deaths. 

This for me is personal. I’ve not been able to visit my severely learning-disabled son, Joey (23), who lives in supported living in Hertfordshire; I wrote about it for Byline a few weeks ago and I’ve been very touched by the response. But the truth is that in many ways what we’re going through—like so many other families with learning-disabled children—is yet another in a long list of challenges. The fact is that since Joey was born we’ve been involved in an endless battle to secure for him what any non-disabled child would be given as standard. We had to fight to ensure that he received the right level of SEN support at his primary school and to make sure that he was transferred to a special school when his disabilities made inclusion impossible; then we had to identify the right residential education and medical placement when the epilepsy became too dangerous, and insist that our local authority didn’t put him in a deeply unsuitable (if cheaper) setting nearer home. And it never stops.

I have box files of letters stacked up in my study and once calculated that his mother or I spent an average of ten hours a week for about fifteen years involved in this struggle. We’ve bawled down the phone trying to get the message across, spent hours worrying about the wording of a letter, and attended dozens of meetings at the local authority which only made real progress when we were prepared to put everything on the line, including our very darkest fears, so as to make the case. Each one of these battles is exhausting: physically, intellectually and emotionally.

And, of course, we’ve researched and accessed all the free support available, instructed expensive lawyers, threatened to contact the press and practiced all the dark arts that being a middle class professional allows you. For the truth is that, despite some good reforms in 2014, the system for providing support to learning-disabled children and young adults is not fit for purpose, and many of the local authorities have been struggling desperately to deliver on their statutory duties. And while it’s true that ten years of austerity have cut their budgets to shreds, the challenges that families like ours face are cultural as much as economic, especially in the vertigo-inducing gap between the positive, aspirational language that is used to anaesthetise our rage, and the all too often shabby, grudging and evasive reality. If the local authorities are now required only to use ‘reasonable endeavours’, the outcomes for our children are likely to get worse. 

Each battle is unique but what every parent of a learning-disabled child shares are the scars on our backs from fighting for their basic rights. We’re sometimes accused of acting like a cabal, but we have to do everything we can to help each other, with parents of older children passing on their bitterly earned insights to new generations. We’re hard-bitten, frequently sceptical and, I’m afraid, grimace drily when we hear parents of neurotypical 11 year olds ‘desperately worried’ about getting them into a decent secondary school. They don’t know how lucky they are. 

But I do know how lucky we are: at the moment, Joey is happy, safe and well looked after in supported living, and long may he stay so. The same, I’m afraid, can’t be said for the many children and young people bullied and abused in care homes and specialist institutions up and down the country, or the more than 600 autistic and neuro-divergent children sectioned, locked up, secluded and physically restrained in NHS Assessment and Treatment Units (ATUs). There are dozens of dreadful examples, including the autistic Bethany, locked away in an ATU for years despite wanting to live in the community; the remarkable Ella Chapple, who lost her sight as a result of the traumatic impact of restrictive interventions; or poor Connor Sparrowhawk, the strikingly charismatic learning-disabled young man with epilepsy who drowned unattended in an NHS bath in 2015. Yes, let’s clap loudly for the NHS and the brilliant care professionals who do so much, but while these gut-wrenching failings continue we must keep asking questions and never console ourselves that all will be well once this ghastly virus has passed. And if you don’t believe me, read Ian Birrell whose brilliant journalism has unearthed a whole universe of pain.

Some people have asked me about my deepest fears for Joey at the moment. My biggest worry is not so much about him catching the virus, it’s about him having to go into hospital if he did. And that’s not just because of what that would indicate about the seriousness of his condition, let alone the concerns that he would be further down the triage list than other healthy 23 year olds or even subjected to a Do Not Resuscitate order. No, it’s because the health outcomes for learning-disabled people in hospitals are so shockingly bad at the best of times. It’s been grimly observed that learning disabilities (which have never killed anyone) are a life-threatening condition in our society, and the idea of Joey being alone in hospital is more than I can bear. And I say that as someone who’s hugely grateful to the NHS for all it’s done for me and my family, not least getting Joey’s epilepsy under control and, no doubt, saving his life on several occasions.

We’re often told that nothing will be the same after this crisis. But for families of learning-disabled people this feels like yet another set of hoops for us to jump through to ensure that those we love are given what the rest of the population expects by right. There are so many decent people committed to helping the learning disabled and their families—in social care, local authorities, law, the charity sector, the NHS, the arts, politics even. But if this crisis is to have a real positive impact, can we at least ensure that our oft-stated commitment to universal human rights extends to the most vulnerable among us, some of whom—like my darling Joey—have no capacity to speak for themselves? 

It’s surely not too much to ask.

Listen to Joey

When I first heard of the impending crisis my initial instinct was to jump into my car, drive forty minutes up the motorway, bundle my Joey in, and bring him back to my flat, where we could lie on the sofa watching endless reruns of Monsters Inc. until the whole ghastly thing had gone away. It was a classic left side / right side of the brain moment, as I struggled to work out where he was actually safest, and I decided to leave him where he was. My daughter was still going to school, and God knows whether I was an asymptomatic carrier. But now, of course, with the lockdown, I can’t go and see him, and I don’t know when I’ll see him again. It hurts, as I’m sure you can imagine.

So why am I telling you this? After all, we all have our own nightmares and we really mustn’t compete with each other for victimhood. But, you see, in some ways my Joey is very different: aged 23, he has severe learning disabilities (no speech at all), intractable epilepsy, and is on the autism spectrum. He communicates his needs with a mixture of simple Makaton sign language and stubborn persistence. He’s a happy young man, who loves the countryside, going on big walks, and hanging out in the natural world: trees, flowing water and animals (all barred at the moment). He’s eccentric, intriguing and infuriating, with a dazzling smile and an engaging innocence that brings out the best in people. He’s at the heart of a big family, and he’s loved and celebrated by many people, even by some who don’t know him. 

Self-isolation isn’t an option for Joey. He needs help with pretty much everything: cooking, medication, dressing and personal hygiene. He lives in a terrific ‘supported living’ unit, part of the remarkable St Elizabeth’s Centre in Hertfordshire, and is looked after by a rota of carers (from all around the world): they’re well managed, properly trained and driven by a deep ethic of care. They’re scrupulous in their procedures and I have every confidence in their professionalism. But the brutal fact is—and I don’t blame St Elizabeth’s for this—they don’t have the right protective equipment yet and haven’t been tested for the virus. Some are quite rightly self-isolating but, with a shrinking pool of care staff, are under increasing pressure. And so, like everyone in care homes at the moment, my small and fragile Joey is at greater risk than I am. By day I calm my nerves with rational analysis, but all too often howl into my pillow at night.

Like all moments of profound crisis, this brings out the best in people—and the worst. This was vividly brought home to me when I rang Joey’s house the other day: “Yeah, we’re alright, we’re always alright, Joey’s laughing, so we must be alright,” was the wonderful, indomitable, reassuring answer. But the care manager’s account of the difficulties of getting food and other essentials because of the behaviour of more fortunate people was a lot less heart-warming, to put it mildly. 

The uncomfortable truth is that an emergency like this exposes unconscious bias. Thus, there was an outpouring of justified rage when it was discovered that in the National Institute for Health and Care Excellence’s (NICE) triage guidelines, learning disabled people were placed just above patients with extreme life-threatening illnesses. Now while it’s true that the learning disabled do die earlier than the average, especially in hospitals, it’s not their learning disabilities that kill them, it’s ignorance. And I’m afraid that NICE’s guidelines (which they’ve now thankfully changed) showed the same lack of understanding that families so often encounter. 

These are, surely, revolutionary times and we can only hope that, as we emerge, fundamental change will follow. After all, it was the end of the Second World War that ushered in the NHS, and our every waking breath must be devoted to ensuring that the recession that will ensue doesn’t take us into the even darker times that consumed Europe in the 1930s. But is it pie in the sky to dream that this extraordinary moment might banish the great lie that there is ‘no such thing as society,’ and offer us the chance to reset our values? Dare we dream of better times? I think my Joey offers us two essential insights.

The first is that if we don’t find a way of supporting, celebrating and investing in the care of the vulnerable, the core values of our society will wither and die. We rightly applaud the heroics of our NHS, but if, as Gandhi insisted, ‘a nation’s greatness is measured by how it treats its weakest members,’ this crisis sets us a profound moral challenge. For decades our society has consistently undermined the care profession, but if we don’t celebrate, reward and champion those people who look after us in our frailty, we cannot claim that we live in a society which values all people equally. Carers matter to us all, whoever we are, however strong, however healthy, and this crisis shows us that in the starkest form imaginable.  

What Joey will also tell you—and he will, if you engage with him properly—is that he’s as deserving of a decent, happy, safe life as anyone is. The Nazis condemned people like him as living ‘lives unworthy of life,’ but if Joey can teach us anything it’s how monstrous such thinking is. At another moment of national crisis, the great Leveller, Thomas Rainsborough, declared ‘that the poorest he that is in England hath a life to live as the greatest he.’ Now’s the time to ensure that Rainsborough’s vision extends not just to the poor, but the vulnerable and the weak, even to people like my Joey whose views can only be heard by those who are prepared to listen. For our society desperately needs to recognise that people like Joey are central to what we are as humans. They are our brothers and sisters, our fathers and mothers, our children and our grandchildren. They are us and we are them. And if we don’t remember that, we are doomed.

Listen to Joey. He’ll show you the way.

Fiction in the age of ‘Fake News’

For those of us of a certain class and background who came of age in the late 1970s and early 1980s, the arts seemed the best possible refuge from the suburban certainties of our parents and the grinding of Mrs Thatcher’s dark satanic mills.  Having been brought up on milky readings of the European classics, occasionally thickened by dollops of socialist realism, the wonders of translated literature felt like handfuls of Provençal herbs. And so we devoured the novels of Milan Kundera and Günter Grass, gorged on Gabriel Garcia Marquez and Mario Vargas Llosa, and guzzled down the masterpieces of modernism. In the cinema we lined up at the Academy on Oxford Street to see the latest from Tarkovsky, Godard and Derek Jarman, and, in the theatre, watched the European avant-garde—Kantor, Peter Brook, etc.—in stunned silence. We were desperate to banish the kitchen sink, break the fourth wall (not just in the theatre) and express new universes of experience. For a brief moment, bushy-tailed and breathless, we lived our very own cultural revolution.

Inevitably however, what was fresh and new started to look faded and overdone. And, in recent years, I find myself increasingly questioning the value of what had seemed so important. For we were convinced that progressive—popular, even—art had to be experimental if it was to be meaningful and scoffed at the idea that the nineteenth-century realists might have anything to offer. But now we have to accept the uncomfortable fact that more people read Great Expectations every year than have ever got through Finnegans Wake, that much bigger audiences show up for a starry revival of The Importance of Being Earnest than a boutique production of Saint Joan of the Stockyards, and that the Impressionists attract vastly bigger crowds than the latest from the Turner Prize. The distinctly reactionary Downton Abbey and The Crown rule supreme on television, while Harry Potter and historical novels dominate in fiction.  What’s more, many of the characteristics of the international avant-garde have become de rigueur and the gestures of the revolution have become the essential commodities of the mainstream. Yes, we must be prepared to die for the right for experimental work to be created, but we should also acknowledge that the genuinely radical is–largely–withering on the vine. And so those of us who embraced perpetual revolution should consider how it fell on the ears and eyes of those we thought we were talking to. Not only do our exertions seem now like a distraction from the pressing realities faced by everyone else, it’s time for culture to accept its share of the blame for the fatal divisions that are currently tearing our society to pieces.

For we find ourselves confronted with a new version of an old problem. How do we champion the workings of the imagination when our inventions are trapped in ersatz, how do we delight in creativity when we’re governed by people who, as Bonnie Greer has argued, are a branch of show business themselves? To put it another way, what is the point of fiction, especially the most extravagant fiction, in a world where facts are regularly derided? What is the purpose of art when all challenge is dismissed as ‘fake news’ and the politician who lies the most confidently walks off with the prize?

The editor of the Byline Time describes himself as a ‘dramatist wrenched out of fiction by the fierce urgency of fact,’ which lays down a pretty stern challenge to the rest of us. The usual defence of fiction is that the lie reveals the truth. But in the current circumstances, it’s perhaps wiser for cultural producers to work how to challenge untruths while recognising that it’s going to require something more analytical than has been offered for a long time.

 History, needless to say, offers its own repeats (‘first as tragedy, then as farce’), and we should perhaps recall the Neue Sachlichkeit, the cultural movement that emerged in Germany in the mid 1920s. Sometimes translated as the ‘new objectivity’ (John Willett brilliantly dubbed it the ‘new sobriety’), this was partly a reaction against the self-indulgence of Expressionism but also an attempt to confront the aestheticisation of politics that the right was starting to master. And so painters like Georg Grosz and Otto Dix mercilessly depicted the real-life consequences of Imperial war, while Walter Gropius at the Bauhaus, Piscator for the Volksbühne, and John Heartfield with his photomontages, exposed politics to the bright light of scrutiny. 

Certainly the great deceptions of today—whether it’s the lies that brought about Brexit and Trump, the catastrophe of climate denial, or the preposterous suggestion that our millionaire leaders will do anything to help the most vulnerable—deserve a full-voiced response, not just from independent journalists but the full range of cultural producers. In ‘dark times’ like these, artists, writers and poets may be tempted to hide their heads and hope that the storm will pass. They should, instead, forge a new kind of art for the new realities and prioritise the stern disciplines of science over the shapeshifting extravaganzas of magical realism.

Such work would blur the boundaries between facts and the imagination. For example, it’s not enough to write a play which champions minority rights, we need to argue the case with the scientific rigour that Adam Rutherford does in his terrific How to Argue with a Racist. Look at the way Steve McQueen’s tremendous Year 3 project (which took hundreds of class photos of Year 3s across London primary schools) implied in such a forceful, but sober, way the great diversity of the capital and the rights and aspirations of every child. Another example might be David Baddiel’s excellent programme about Holocaust denial, which combined a powerfully personal viewpoint with scrupulous attention to detail, and made his fundamental argument—that there is no such thing as Holocaust denial which isn’t a proxy for antisemitism—incontrovertible. 

The crucial point is that the lies we face every day need to be confronted head on, and artists should consider using their imaginative talents to help our society recover its respect for reality. We all wear the badge of radicalism with pride, but what does that really mean today? When a government is as committed to ‘creative destruction’ as this one, we need to think about what we want to preserve, because if we don’t try to stop the onward march of lies, it’ll be hard for us to blame others when we wake up and realise what we’ve lost. And that may be the biggest and most bitter lesson of Weimar.

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Eugenics and the Intellectuals

It’s been quite a weekend for eugenics. First there was news of Andrew Sabinsky, one of Dominic Cummings’ new intake of ‘weirdos and misfits,’ with his claim that eugenics was about ‘selecting “for” good things’ and that ‘intelligence is largely inherited,’ and then Richard Dawkins popped up on Twitter claiming that since eugenics ‘works for cows, horses, pigs, dogs & roses’ there’s no reason to think it wouldn’t ‘work for humans.’ He concedes that there might be grounds for rejecting the practice before claiming, absurdly, that ‘facts ignore ideology.’ But why do the apparently intelligent and well-educated so often hold the unintelligent or the disabled in such contempt? As the father of a young man with severe learning disabilities it’s a question I confront regularly. 

It was the distinguished English scientist, Francis Galton, who, fascinated by his uncle Charles Darwin’s On the Origin of the Species, asked, ‘Could not the race of men be similarly improved? Could not the undesirables be got rid of and the desirables multiplied?’ In 1883, he coined the term ‘eugenics’ and set out to improve the human race by ‘better breeding.’ His supporters soon linked such ‘undesirables’ to a range of social problems and called for government action to improve ‘biological quality.’ In 1907, Galton co-founded the Eugenics Society and a senior doctor soon recommended the compulsory sterilisation of the ‘feeble minded’, describing them as ‘social rubbish’ who should be ‘swept up and garnered and utilised as far as possible’. Darwin’s own son presided over the first eugenics conference in 1912 and lobbied the government to establish squads of scientists, with the power of arrest, who would travel around the country identifying the ‘unfit’. Those so classified should be segregated in special colonies or sterilised.

Political supporters included the Socialist firebrand, Will Crooks, who described ‘mentally defective children’ as ‘absolutely useless,’ comparing them to ‘human vermin’ who do ‘absolutely nothing, except polluting and corrupting everything they touch.’ Meanwhile, Julian Huxley asked plaintively: ‘What are we going to do? Every defective is an extra body for the nation to feed and clothe but produces little or nothing in return.’ A bill for the compulsory sterilisation of certain categories of ‘mental patient’ was proposed, with the Labour MP, Archibald Church, wanting to stop the reproduction of those ‘who are in every way a burden to their parents, a misery to themselves and in my opinion a menace to the social life of the community.’ Soon, a government committee recommended legislation to ensure the ‘voluntary’ sterilisation of ‘mentally defective women,’ which was welcomed by the Manchester Guardianbut, thankfully, never passed into law.

Confronted by a ‘long line of imbecile,’ Virginia Woolf insisted that they should ‘certainly be killed,’ and the birth control champions, Margaret Sanger and Marie Stopes, were both confirmed eugenicists, championing not just contraception but, as Sanger put it, sterilization for ‘that grade of population whose progeny is already tainted, or whose inheritance is such that objectionable traits may be transmitted to offspring.’  Some of British socialism's most celebrated names agreed, including the founders of the Fabian Society, Sidney and Beatrice Webb, along with Harold Laski, later Chairman of the Labour Party, who predicted that the time was coming ‘when society will look upon the production of a weakling as a crime against itself.’ These views were echoed by John Maynard Keynes and, in 1931, the New Statesman asserted that ‘the legitimate claims of eugenics are not inherently incompatible with the outlook of the collectivist movement.’ Bertrand Russell proposed colour-coded ‘procreation tickets’ to prevent the elite’s gene pool being diluted by inferior stock, while Bernard Shaw insisted that ‘the only fundamental and possible socialism is the socialisation of the selective breeding of man,’ suggesting that defectives could be dealt with in a ‘lethal chamber.’ Using the same haunting phrase, DH Lawrence declared: 

‘If I had my way, I would build a lethal chamber as big as the Crystal Palace, with a military band playing softly, and a Cinematograph working brightly; then I'd go out into the back streets and the main streets and bring them all in, the sick, the halt and the maimed: I would lead them gently, and they would smile me a weary thanks; and the brass band would softly bubble out the Hallelujah Chorus.’ 

He could be describing a suburban English Treblinka.  

It took Nazi Germany, and the murder of approximately 250,000 people deemed to be living ‘lives unworthy of life,’ to put these fantasies into action. But the unhappy truth is that, even after the war, the eugenics agenda in Britain was still current. On the day in 1943 when his famous report was being debated, William Beveridge, the creator of the welfare state, slipped out of the gallery of the House of Commons to reassure a meeting of the Eugenics Society of his continued support; and, in 1952, the eminent British neurologist AF Tredgold concluded that:

‘Many of the defectives 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.’

The Nazis had been defeated but, for a moment, it seemed possible that one of their most repulsive policies might survive.

Such views are rare today (though perhaps not in Downing Street), but a double standard is still in evidence in the way that abusive language is used, with racist and sexist terms being strictly taboo, but their learning disabled equivalents—‘idiot’, ‘cretin,’ ‘imbecile’, ‘retarded’ etc.—are all too common, even in supposedly progressive circles. Representations in drama and art are infrequent and often misguided, emphasising individual tragedy not the broader social experience. And scholarship is hardly exempt, with the moral philosopher, Peter Singer, dismissing our protection of the profoundly disabled on the grounds of ‘speciesism,’ declaring that their intellectual capacity is less than many animals. One of his followers even wrote an article entitled ‘Do the Mentally Retarded Have a Right to be Eaten?’ which he insisted was a philosophical exploration, intended to ‘raise the issue of rights for the retarded in its hardest context,’ adding, sternly, that ‘too much well-meaning sentimentality is allowed to pass for thought in the discussion of the retarded, and I want to shock my way through this.’ And Dawkins, in response to an enquiry from a woman about what to do if she discovered that she was pregnant with a foetus with Down’s Syndrome, replied ‘abort it and try again. It would be immoral to bring it into the world if you have the choice.’ He denied that he is a ‘eugenicist’, but it’s hard to understand what he means by the word ‘immoral’ in such a context. What, of course, Dawkins forgets is that eugenics have been tried and failed abysmally: despite the Nazi programme of murdered and sterilisation, Germany’s population of disabled people is entirely in line with other countries.

It takes an intellectual to come up with such poisonous guff.  Protecting the rights and opportunities of the learning disabled is hard enough; what’s striking is the way that so many otherwise clever people fail to get it. 

This article was first published in Byline.

The Great Brexit Fiasco

So today the country I call home gives up its membership of the European Union. There are so many reasons to regret this preposterously self-destructive act of vanity, that it’s hard to know where to start.  

The most substantial issue is, of course, the economy. The plan to break away from the biggest and most successful single market in the world, only 21 miles away, in order to trade with and offer services to - what?- Sri Lanka and New Zealand is self-evidently absurd. The Brexiters huff and puff about Project Fear, but things will change when the economy suffers, especially if no deal is negotiated and we end up trying to trade ‘on WTO terms.’  The country may have spent four years indulging in identity politics but it’s still ‘the economy, stupid’ that ultimately matters. 

But what I want to address here is the tone of the debate and its consequences.  And to do that we need to go back to the immediate aftermath of the referendum.  Responsible politicians would have stated the obvious: that the outcome was close, informed opinion was worried, and that the best option was a cross-party agreement which tried to deliver on the result but with minimal economic fallout. They would have emphasised the rule of law and the supremacy of parliament and reminded everyone that the referendum was ‘advisory’. Above all, they wouldn’t have triggered Article 50 until they’d secured broad support. Brexit is far too serious a matter to be left to one bitterly divided political party. Instead, Theresa May, terrified of her ultras, repeated the meaningless phrase ‘Brexit means Brexit’ and the endlessly prevaricating Jeremy Corbyn was no better. Terrible political leadership simply weaponised the already toxic debate and what should have been a question of grave national concern was politicised in the worst way possible.  

So many things have been coarsened by this whole sorry mess, and it’s difficult to know how we’ll emerge. But, it seems, some fundamental British values are under threat.  Look, for example at the attacks on knowledge and expertise. ‘The British people have had enough of experts’, declared Michael Gove, and soon all opinions, however ignorant, were regarded as equally valid. But this isn’t how we operate in the rest of life and certainly shouldn’t apply to the extraordinary complexity of international trade and cross border services, let alone the intricacies of the Northern Ireland peace process or the transport of time sensitive medicines. ‘Facts are stubborn things,’ said John Adams, and all too often in this row, the facts have been twisted and falsified, not just by the newly empowered Twitter mob (on both sides), but the Brexit leadership itself.

One of the most shocking developments has been the demonising of the ‘elite,’ a group apparently dedicated to opposing ‘the will of the people.’ This kind of language has a terrible pedigree: Goebbels used the ‘people’s community’ to justify Nazi atrocities, Stalin’s dictatorship was predicated on the persecution of anyone who wasn’t a worker or a peasant, and Mao and Pol Pot killed millions of people who just wanted to get on in life. ‘Dear’, my great teacher, Margot Heinemann said, ‘be careful not to use the phrase “the people” in the way Hitler would have done,’ and all dictatorships turn their backs on experts, with fatal consequences to millions, including, of course, the ‘people’ whose interests they claim to be championing. 

This kind of language is built on deep felt resentment and an inferiority complex.  Indeed, it’s notable that the Brexit leaders have consistently ignored the real divide in this country, between the rich and the poor, partly because so many of them are millionaires themselves. (It’s a funny world when the supposed tribunes of the people are millionaire Etonians).  Instead, they’ve attacked the 48% (52% now) who supported Remain as ‘out of touch metropolitans’ who want to ‘overturn democracy’. It’s as absurd as it’s dangerous, but who are these sixteen million people who ‘ordinary people’ are being encouraged to despise?  They include school teachers and academics, police officers and lawyers, economists and accountants, consultants and businessmen, doctors, nurses and scientists, as well as writers, entertainers, trading experts, sportsmen and women, unionists, musicians, intellectuals, engineers, civil servants, judges and on and on: in fact, a whole range of people that a civilised society needs onside if it’s going to function.  ‘Hang all the lawyers’ proclaims one of Jack Cade’s followers in Henry VI, and for the Brexiters to attack this huge group of professionals and encourage a mockery of their knowledge, commitment and expertise, is deeply counterproductive.  Brexit Britain will need the goodwill and commitment of these people if it is to survive the icy cold sea we’ve been thrown into.

When challenged about the nature of their fantasies, Brexiters offer a range of answers, including questionable notions of a democratic deficit, the cost of membership, and the issues raised by European immigration.  And when confronted by the many concerns expressed by all sectors of informed opinion, they tell us that their project is about something other than prosperity, it’s an emotional sense of belonging which we, as ‘people of nowhere’ couldn’t possibly understand. They’ve been ignored for far too long, they moan, and it’s time that their dreams of independent nationhood were realized. Apart from the fact that Britain’s independence was never actually threatened by British membership, and many of us ‘elitists’ have problems of our own to deal with, we should, perhaps, counter this ludicrous attempt at monopolising patriotic emotion by sharing our own feelings about Britain and its place in the great continent of Europe. The Brexiters will say that we’re only leaving the bureaucracy of the EU, not Europe itself.  In which case I look forward to a leading Brexiter proclaiming his identity as a European, instead of dreaming of another time when, it’s thought, Britannia ruled the waves. It’s long past the time for us proud Europeans to shrug off the Union Jack and stand up for what we care about, and, at last, talk about what we feel. Brexiters shouldn’t be allowed a monopoly in emotion.

The truth is, I am first and foremost a European. My mother was born in Germany, my father’s family comes from Ireland.  My main language is English, but I can also manage in French, German and Italian. My cooking is mostly poor imitations of French and Italian and I drink European wine and beer. I take most of my holidays in continental Europe and many of my formative experiences were European. My great teacher was the daughter of Jewish refugees and many of my favourite novels, plays and works of art are European.  The vast proportion of the books in my library are European (yes, I include English literature in that category) and hundreds are translations from European languages. European blood runs in my veins and I’m acutely aware of the enduring impact of Greek and Latin on all aspects of the civilisation in which I live.   

What’s more, while I have a penchant for late twentieth century American music and love Chinese food, my attitude to the individual and society are distinctly European. In the USA I find myself in a very strange land which champions the individual above any sense of shared social responsibility and so often resorts to sentimentality as a way of dealing with difficulty. When I go to China, the opposite end of the spectrum, I’m shocked by the sense of the massive scale of the country and an underlying brutality in the way it regards the individual. I dread to imagine how my profoundly disabled son, Joey, would have managed to thrive in either country.  Postwar Europe offers a kinder, better way of being human, and we leave that family of beliefs at our peril.

And so when I look out across the Channel I know that my heart belongs to Europe and it always will: its culture, its history and its way of life.  What’s more, I know that the country in which I live, the country that I will always love despite this dreadful mistake, has played a hugely important and creative part in the making of the uniquely European civilisation. Our pragmatism, our tolerance, our professionalism, our inventiveness, our creativity, our skills and our talents, our passion and our commitment. And we in turn, ever since the Norman Conquest, have benefitted hugely from the Continent, in so many ways. Just think, for a moment, of the huge benefits of the various waves of Jewish immigration, especially, of course, in the 1930s. The great European movement that emerged after the war was a way of putting nationalist division aside, not eradicating national character, and it’s part of the Brexiter strategy of resentment and self-pity to fail to see the astonishing mutual benefit of our membership. And so in response to reactionary nostalgia, I suggest we should reassert the astonishing achievements of Britain’s essential role in European civilisation, from the abolition of slavery to the promotion of women’s rights, from William Shakespeare to Stephen Hawkins, the best of us, working together, have made all of Europe a better, happier place.  The tragedy is that a small group of resentful reactionaries have dragged us away from that extraordinary achievement. We can only hope that their nationalism doesn’t lead us back into the disasters of the Europe of only a hundred years ago.  

Our job now—as ‘elitists’, ‘remoaners’, ‘traitors’, and ‘enemies of the people’—is to hold the Brexiters’ feet to the fire.  For years they’ve posed as the insurgents, they’ve moaned and complained and mocked and whined, they’ve dubbed themselves ‘bad boys’ and made clear that nothing is ever good enough for them and showed that their self-pity knows no ends.  Well, they should have been careful what they wished for, because whatever happens now they’re responsible for it, from the Prime Minister right on down to the good voters of Sunderland.  Of course, they’ll try to blame everyone else: the EU, the Remainers, and, no doubt, immigrants and the disabled and anyone else who doesn’t fit into their view of what British people should be.  But we must call them out on that, every step of the way.  There was something good and they broke it. And now they must be made to own it.  It’s the Brexiters and the Brexiters alone who are to blame for what happens next.  

The whole world is watching, their mouths wide open.