Cultural Representations of Learning Disabilities: My keynote address at the Cultural Inclusion Conference 18 October 2018


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I’m delighted to have been asked to address this conference, but also a bit worried.

I’ve worked as a theatre director for a long time, ran theatre companies for more than 20 years, and written books, plays, translations, journalism, and so on. 

I’m also the father of a young man with severe learning disabilities: Joey is 22, has intractable epilepsy and Autism Spectrum Disorder, and has never spoken a word.   

I’m the proud Chairman of KIDS, a terrific national charity which provides a range of services for disabled children, young people and their families.   And I’m a campaigner for the rights and opportunities of disabled people, especially people with Learning Disabilities.   My Twitter handle states ‘Learning Disabilities Matter’ and that’s become my unofficial mission statement.

But although I’m an experienced director and deeply committed to people like Joey, I’m no expert on theatre for or by people with Learning Disabilities.  I champion all attempts to make the arts more responsive to this group and have huge respect for the people who take it on -Graeae, Ramps on the Moon, Blue Apple and Dramatize, and so many others, all doing exemplary work. 

But the fact is it’s not within my area of expertise or experience and so I feel a bit like an impostor in this conference.

What I can talk about is the representation of Learning Disabilities in culture, especially drama, but also in our everyday language.   As I’ll try to show, I think people with profound learning disabilities are a forgotten minority. They pose real challenges to many of our deepest  assumptions not just about art, but humanity too.  And it’s partly for this reason that I think attention should finally be paid. 


Socrates proclaimed that the ‘unexamined life was not worth living’, and we all have a sense of what that means: think carefully about what you’re doing, analyse your actions from every perspective, and use your brain to live in full consciousness of your actions.  But the problem with the phrase is that it suggestions that people who don’t examine their lives are living lives unworthy of living.  I’m unsure of how much my Joey ‘examines’ his life and, as so often, Learning Disabilities make us look at the familiar from the other end of the telescope.  Brecht would be proud: Learning Disabilities ‘alienates’ the normal and provokes us into thinking again.

Like many of you, I love Shakespeare with a passion. I’ve directed a dozens of his plays, written a book about them and Shakespeare is the closest I have to religion.  But the fact is that for all the claims of his universality, there’s no character in the plays with Learning Disabilities. People point to the fools: but while some of the real life ‘natural fools’ in Elizabethan England probably had Learning Disabilities, the fools in Shakespeare are all ‘artificial fools’: highly intelligent working-class men whose brainpower helped them see through the hierarchies of the world and satirise the underlying truths of society.  

Other people point to the illiterate Peter in Romeo and Juliet, the blustering Dogberry in Much Ado, or Dull, the policeman, in Love’s Labour’s Lost.  But these aren’t people with Learning Disabilities, they just don’t have an education, and this conflation of intellectual capacity and class status lies at the heart of the matter.  

It’s striking that when Macbeth calls life a ‘tale told by an idiot full of sound and fury signifying nothing’, the word didn’t mean someone with learning disabilities, it meant someone with insignificant social status.  Now of course people with Learning Disabilities would have had negligible social status, but not every so-called ‘idiot’ had Learning Disabilities.  

This mention of the word ‘idiot’ makes this perhaps the moment to take a sidestep into language.  

Because the more I listen out for it, the more I notice how terms of abuse for people with Learning Disabilities are common in everyday speech, and that there is a grotesque double standard in the terms of abuse that are acceptable in polite society, and in the arts.   

Last year I saw two plays at the National Theatre in which characters spoke about others being ‘retarded’.  In one a new mother celebrated the fact that her baby wasn’t ‘retarded’.  Not only did the audience not blink, but there was no dramatic consequence for the speakers. Compare that to a play in which a character suddenly used the ‘n’ word: within half an hour he was blinded and subjected to a tirade about his racism.  

Or think of the number of times we’ve been told that Trump is a ‘moron’, or that only ‘cretins’ voted for Brexit, or that Momentum is full of ‘retards’.  I keep getting called a ‘libtard’ on Twitter (and I wear the badge with pride).  ‘Sticks and stones will beak my bones but words will never hurt me’, but it is possible that we should be more careful when using language invented to describe and then persecute some of the most vulnerable people in our midst.

When looking at the cultural representation of Learning Disabilities the most obvious observation is there an aching absence.   This is partly because for most of history Learning Disabilities wasn’t recognised as a discrete category.  But it’s also, I’d suggest, because such people wouldn’t be regarded as being of artistic interest.  Why bother write about people who can’t speak, who aren’t geniuses, whose brains won’t split the atom.

A striking exception is Wordsworth’s long poem The Idiot Boy (1798).  It’s an affectionate portrait of a young man who has evident Learning Disabilities.  A precocious fan was dismayed by Wordsworth’s choice of subject, and wrote that ‘it appears almost unnatural that a person in a state of complete idiotism should excite the warmest feelings of attachment in the breast even of his mother’.  In a fascinating response Wordsworth offered one of the first written expressions of genuine affection for people like my Joey. The last paragraph reads:

The loathing and disgust which many people have at the sight of an idiot is a feeling which, though having some foundation in human nature, is not necessarily attached to it in any virtuous degree, but is owing in a great measure to a false delicacy, and, if I may say it without rudeness, a certain want of comprehensiveness of thinking and feeling.

Another example is Dickens, whose essay ‘On Idiocy’ in Household Words is remarkably progressive.  Speaking about a person with learning disabilities, an idiot, he concludes that ‘there is no greater justification for abandoning him than for abandoning any other human creature.’  It’s hardly surprising that Dickens should have been involved in setting up Great Ormond Street Hospital, which Joey visited regularly.  

Although the twentieth century saw huge advances in the representations of many minorities, people with disabilities were frequently ignored, or when featured usually had to carry a heavy load of metaphorical meaning. One example might be the voiceless Kattrin in Brecht’s Mother Couragehaving to act as a Cassandra-like prophet of catastrophe.   

Another tendency is to make a character with disability someone with exceptional, and uplifting, abilities: Rain ManMy Left Foot and, possibly, The Curious Incident of the Dog in the Night Time, to name just a few examples.

Even a play such A Day in the Death of Joe Egg which takes parenting a child with disability as its subject, sees the profoundly disabled daughter as a problem, an object, somebody to be reacted against, but hardly as a person in her own right.  The poster for the original production didn’t credit the actress who played her.

I’ve even heard about a play being developed in which a character with severe learning disabilities is going to be represented by a puppet.


By any standard, the first half of the twentieth century was a terrible time for people with Learning Disabilities.  Recent research shows that Hans Asperger, one of the pioneers of autism, was also involved in the T4 programme, the dreadful murder of almost 200,000 disabled people by the Nazis, many of whom had Learning Disabilities and lived what Hitler called ‘lives unworthy of life’.  

Les Murray’s poem Dog Fox Field is, I believe, the greatest artistic responses to the catastrophe.  He prefaces it with a note quoting the Nuremberg trials to the effect that ‘the test for feeblemindedness was they had to make upa sentence using the words dog, fox and field’. Here goes.  Hope it doesn’t crack me up:       

These were no leaders, but they were first

into the dark on Dog Fox Field:

Anna who rocked her head, and Paul

who grew big and yet giggled small,

Irma who looked Chinese, and Hans

who knew his world as a fox knows a field.

Hunted with needles, exposed, unfed,

this time in their thousands they bore sad cuts

for having gazed, and shuffled, and failed

to field the lore of prey and hound

they then had to thump and cry in the vans

that ran while stopped in Dog Fox Field.

Our sentries, whose holocaust does not end,

they show us when we cross into Dog Fox Field.

It’s a masterpiece, which manages to be both subjective - we feel what it is like for these kids - and objective.   And I know with a gulp that it’s a test my Joey would have failed miserably.

We shouldn’t imagine that the Nazis were alone in their detestation of people with Learning Disabilities.  In fact, a belief in eugenics was widely shared.  Many British and American liberals - some of them household names - believed that the sterilisation and murder of such people would be beneficial to the ‘race’.  

I hope I won’t dash too many illusions if I quote Virginia Woolf recalling coming across “a long line of imbeciles” on 9th January 1915.  She describes a few of them in the most uncomplimentary and derisive terms, concluding that “It was perfectly horrible.  They should certainly be killed.”

No room of their own for that lot.


So what can we do now, in the 21st Century?

Well, one thing is to be honest about the challenges faced.   It’s all too easy for arts organisations to make nice noises about the subject but not engage with the reality.

Last year I was approached by a director who was staging a good new play which featured two young women with Down Syndrome and a young man with autism.  She and her producer wanted to know if I had any insights.  My answer was simple, almost banal: ‘people with  Learning Disabilities have learning disabilities’, I said.  But the implications - which rather shocked them - was that they needed longer rehearsals, a different attitude to the status of the script, altered rehearsal and performance hours, etc.  The point is that involving people with Learning Disabilities requires practical changes, not just changes in attitude.  The result was terrific, and they had good specialist support from Access All Areas.  But I think it was a steep learning curve for everyone involved.

There are, of course, dozens of brilliant companies and individuals doing marvellous work with people with Learning Disabilities. But non-specialist organisations who want to include people with Learning Disabilities need to approach the subject with respect and seek out advice.

They could do worse than read Sara Ryan’s brilliant book, Justice for Laughing Boy, about the fight for justice for her son, Connor Sparrowhawk, who drowned in a bath in an NHS Unit while having an epileptic seizure.  

If the inclusion of people with Learning Disabilities has its challenges, their representation in modern culture seems - at times - even more problematic.  One gross example was Las von Trier’s film Idiots (1998) in which a group of neurotypical people pretend to have learning disabilities in order to confront the apparent certainties of bourgeois life.  

Another dreadful example  - in my opinion - is Brad Fraser’s play Kill Me Now which seems to imply that no greater love hath the father of a profoundly disabled young man than to wank him off in the bath.  In both examples, if one replaced the category disabled with some other minority or vulnerable person its true nature would quickly become true.  Imagine the father (or mother) in Brad Fraser’s play molesting his teenage daughter in the bath and you’ll quickly see what I mean.   It’s striking that in both the people with Learning Disabilities were performed by the neuro-typical

There is, I believe a real question of taste. And I don’t mean taste in a ‘simplistic, not wanting to offend the delicate’ way.  I mean taste as a political act, in the way we talk about the vulnerable, and treat people who are, inevitably, weaker than we are.  I faced this problem myself in writing my play All Our Children about the Nazi T4 programme.   I realized that to bring on stage the victims of this repulsive crime would cause as many problems as it solved.  If they were played by neuro-typical children the obvious and important questions would be asked about ‘cripping up’; but to introduce a group of children with the cognitive disabilities that the Nazis designated for murder would, I believe, distract the audience from the subject and make them feel uncomfortable in entirely the wrong way.

Some people felt I’d missed a trick and I understand what they mean, and I do understand what is meant by ‘nothing about us, without us’.   But what I do know is that just as my Joey wouldn’t understand the conventions of being in a play, so he’d not have understood that the busses with grey painted windows which the Nazis used were going to take him to his death.  The two facts are related and it was more important for me to explore the actions of the persecutors in depth, than to feature the category of people who were being persecuted.  


And it’s the subject of Learning Disabilities, in all its complexities, that I want to see represented more widely in the arts. It’s not enough to do another production of As You Like It and have a girl with Down Syndrome playing Rosalind - welcome though that would be.  It’s new plays, new films, new art, new stories that are needed.

And so here are ten things I’d like to see, not in any particular order:

Stories with characters with Learning Disabilities who aren’t defined solely by their Learning Disabilities.  

Stories in which, when a character’s Learning Disabilities are mentioned, we see the social structures surrounding him or her.

Stories which recognize the challenges of a relative with Learning Disabilities, but don’t show them simply as a tragedy. 

Stories of people with Learning Disabilities which aren’t simply examples of courage in the face of insuperable odds.  

Stories in which people with Learning Disabilities aren’t granted special powers or abilities.   

Stories which don’t expect people with Learning Disabilities to convey a load of metaphorical meanings.

Stories in which family members can be shown to be frustrated by their relatives’ Learning Disabilities while also loving them forever

Stories which show that while people with Learning Disabilities are sometimes the victims of abuse and cruelty, they often bring out the very best in the people who come into contact with them.

Stories which show the funny side of some learning disabled behaviour without falling into contempt or abuse.

Stories in which the language of contempt and abuse towards people with Learning Disabilities is challenged.

In other words, I want representations of people with Learning Disabilities which see them as human beings like the rest of us. Because people with Learning Disabilities are our brothers and our sisters, our sons and our daughters, our mothers and our fathers.  They are ourselves.   

It’s time the arts stood up for and found ways of representing the complex and all too human experience of this forgotten minority. 

‘Challenging parents’

It’s hard to imagine an article in a specialist journal causing more hurt and rage.

Last week Gemma Corby, a columnist at The Times Education Supplement, wrote a piece advising SENDCOs (Special Educational Needs and Disability Coordinators) on how they should ‘handle difficult situations’ with ‘challenging parents’ of disabled children.  There are, she explains, three different kinds of parents - ‘angry’ ‘pandering’ and ‘non-engaging' - and she offers bland (if frequently patronising and defensive) advice on dealing with each group.   It’s hard to summarise the hundreds of outraged responses from real-life parents of disabled children that I’ve read on Twitter, Facebook and the TES website, but four underlying themes emerge.

The first is Corby’s apparent lack of understanding.  She acknowledges that our behaviour ‘may’ be the result of the challenges we face, but completely fails to recognise the scale and gravity of the task.  The briefest of lists should include: local authorities failing to produce legally binding EHCPs while deploying armies of lawyers to defeat our poorly funded challenges; schools who’re deeply reluctant to provide the support that our children obviously need, partly because of their own priorities but also because of shrinking education budgets; the continuous struggles to secure for our children the minimum levels of health and social care that they so obviously require; appallingly bureaucratic systems which require us to emphasise our child’s inabilities in order to get any help at all; and the rapid scaling down of the other services that were designed to help disabled children and their desperately stretched families.

Then, the article fails to acknowledge the personal stresses that we all, in different ways, deal with. Statistics show a much higher incidence of marital breakdown in such families as well as a negative impact on the ability to hold down jobs and pursue a career.  Such parents are more likely to experience ill health and anxiety, depression, and despair are the all too common shadows lurking behind the positivity and joy that we all try to live by.  The recent report into early mortality among people with learning disabilities is just one more area of concern and challenge.   In other words, Corby shows a shocking ignorance about the parents she claims to understand. 

The third aspect of the article that is so objectionable is the ‘us’ and ‘them’ nature of her argument, as if parents were the enemy, exacerbated by categorising us and calling us names. This would be insensitive at the best of times, but, as Learning Disability England has so cogently argued (here), the terrible deaths of disabled young people recently and the abuse heaped on their grieving parents by professionals makes it doubly disgraceful.   The awful lesson of these events, as shown so vividly by Sara Ryan’s remarkable Justice for Laughing Boy, is that when it comes to the most vulnerable people in society the institutions set up to help - the education system, the NHS, social care, the legal profession, even parliament - sometimes, appallingly, let them down.  Sara Ryan was called a ‘difficult woman’ and a ‘toxic mother’, because she fought so hard for the justice that the world had denied her beautiful son.   It’s time for the name calling to end.  

The fourth constant in so many of the replies from parents is the way that Corby’s antagonistic language is not just offensive, it’s unrepresentative of the real situation on the ground.  Many commented touchingly on the very positive, collaborative and creative natures of their experiences with SENDCOs, just as many SENDCOs and other people in education so evidently treat parents with imagination, empathy and collaboration.  We know that the TES is a paper for teachers, not parents, but what’s striking is how out of touch the writer seems to be with her readers.

One of the things that people without disabled children sometimes misunderstand is that we love our disabled children just as much as we love our non-disabled ones.    Most of us have been through every version of grief, denial, and worry, but have realised that our children are as worthy of life and happiness as any of us, and we resolutely refuse to be patronised, lectured or ignored by the forces seemingly set in judgment over our heads.  This article has touched the rawest of raw nerves.

The fact is, of course, that 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 have to, and would do anything to lay the burden down.  It would be marvellous if the TES found a way of acknowledging the disastrous impact of this deeply misguided article on a group of people who’ve got enough battles to fight already.

Joey plays football

Those of you who know me won't be surprised to hear that I haven't been to a football match since about 1971.

Until today.

Today I saw a brilliant team from the St Elizabeth's Centre in Hertfordshire take on the Bishop's Stortford Special Needs squad in the Inclusion Cup at the Bishop's Stortford Football Ground.

It was one of the best things I've ever seen: heartwarming and hilarious, passionate and incompetent, friendly and fiercely competitive and wreathed in smiles and laughter both on the pitch and off.

And Joey played for St Elizabeth's squad, in their smart Arsenal red.

He got two touches of the ball. One was a free kick which he tentatively rolled backwards towards the St Elizabeth's goal. The other was a throw in which he decided to take as a kick instead. But each got a huge whoop from the carers and friends who were partying in the stands.

How anything could be so straightforward and yet so profound is a riddle to me. But it was both and you'd have to have a heart of stone not to be moved to tears by the whole thing, even as you laugh with joy. You see, disability isn't all tragic. What's more, St Elizabeth's won 4-2...

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What is intelligence and does it really exist?

What is intelligence?

One of the things that being Joey's dad has made me question is the way that we talk about intelligence.

I increasingly wonder whether the very idea of intelligence has been created by the educated to justify their privilege. 

It's clear that cognitive disabilities are a reality, from the severe learning disabilities that Joey has, right through to the mild dyslexia that is so common. 

But beyond these challenges, can you really say that person X is more intelligent than person Y without exploring their backgrounds and education. Obviously people have differently 'shaped' brains (I'm better at words than numbers, humanities than sciences), but it's striking the way that it's impossible to say which of my brother and two sisters, all of whom are high achievers, is the most 'intelligent'. What we have in common is good education and a background which encouraged us to think and achieve. 

When I raise this people will say, yes but there were 'thick' people at my posh school who never went to university, or there are people from underprivileged backgrounds who had glittering careers where their 'intelligence' carried them through. I'd argue that you need to look more carefully at the particular nature of their background before you come to those conclusions. And, like it or not, having a career in business requires as much 'intelligence' as being an Oxford don. And much as we may hate Donald Trump, it's as inaccurate to say he's 'stupid' as it is to call him a 'very stable genius'

Nurture, much more than nature. 

That'll set the (intelligent) cats among the pigeons

Twitter, Bletchley Park and the meaning of Fascism

Twitter is a funny business, isn’t it?

On September 4th I posted a picture (taken from The Times) of a group of elderly men and women who’d worked as code-breakers at Bletchley Park during the Second World War, and wrote above the picture, ‘This is what British anti-fascists look like’.

The tweet was ‘liked’ more than 9000 times and retweeted almost 4200 times.  It also provoked a large number of replies: some were interested in how many of them were women; others reminded me of other ‘British anti-fascists’, from the men and women who fought Mosley’s Black Shirts on Cable Street or volunteered to fight in Spain against Franco, right through to front line soldiers in the war against Hitler.  I agreed with these comments and certainly wasn’t implying that this was what all British anti-fascists look like.

I recognise that in some ways my comment was badly phrased, mischievously badly phrased perhaps.  I should perhaps have written ‘this is what some British anti-fascists look like’, or just expressed my gratitude for their contribution to the war effort.  But my comment was deliberately open to misinterpretation, and I will admit that I did have in my mind the row about American ‘anti-fa’ protests at Charlottesville, Virginia, and Donald Trump’s insistence on moral equivalence.  ‘If you want to see what people who opposed Fascism look like’, I was trying to say, ‘look at these highly respectful and immaculately dressed old people’ before you condemn the category of ‘anti-fascism’.  

Nothing, however, prepared me for the flood of likes and comments from UKIP and Trump supporters who seemed to think that my intention was to criticise and condemn the young people who protested against the neo Nazis, White Supremacists and Ku Klux Klanners who are making such a terrifying resurgence in modern America, or the forces of nationalism unleashed in Britain by the EU referendum in 2016.

What was striking about so many of these responses is how contested and misused the word ‘fascism’ is in modern parlance.   These old people were praised because they seemed respectable, white and intensely ‘British’.  My tweet, I realised to my horror, was being liked and retweeted by Ukippers and Trumpeteers because they thought I was making a distinction between them and the young ‘riff-raff’ who opposed torchlight processions, anti-semitic chants and swastikas and confederate flags being paraded through the streets or opposed the whites-only racism unleashed by some of the followers of Nigel Farage and English nationalism.

And I suddenly remembered another tweet of mine, when I took my two children (aged 8 and 20, but profoundly disabled) on one of the protests against triggering Article 50, and tweeted a picture of all us, saying that this was what ‘national saboteurs’ looked like.   Not only was I trolled by people saying that I was indoctrinating my children, they claimed that I was behaving like a ‘fascist’ in denying the will of the people.  It seemed to escape their notice that freedom of assembly and speech was one of the first things the European fascists banned.

And it’s struck me again and again over the last dreadful year that the word ‘fascist’ is being dangerously misused, is being turned inside out and used to describe anyone you disagree with, in brief that this towering political evil is being relativised, trivialised and exploited in a way that should worry us all.

Because what is Fascism really?

Well, there are lot of things that it isn’t.  It’s nothing to do with the vile brutality and mass murder of the terrible days of Soviet Communism, despite all the Tweets I’ve seen quoting George Orwell’s argument that ‘fascism’ will come from the left and reminding me that the Nazis called themselves ‘national socialism’.  Nor is it anything to do with the attempt to bring the warring nations of Europe into a political and economic union, which has led to the longest period of peace and prosperity in European history.  

Nor, frankly, has Fascism much to do with the vile kleptocracy and economic nationalism of Donald Trump, Steve Bannon, Stephen Miller and the rest; or the hubris of Michael Gove, Boris Johnson, Jacob Rees-Mogg and the desperately misguided champions of Brexit, even if in their hatred of the press, expertise and an articulate opposition they raise the spectres of the past.  ‘History’, Karl Marx said, ‘repeats itself, first time as tragedy, second time as farce’ and as the lies, vanity and absurdity of 2016 become clear, when the bullshit has finally hit the fan, I’m sure that these two great democracies will find their way back to some version of sanity.

No, Fascism is something much, much worse.

It’s the ideology and thinking that places all authority in the hands of one leader and systematically destroys all opposition; it’s the strutting arrogance and bullying of Hitler, Mussolini and Franco and their uniformed thugs arresting, torturing and murdering socialists, anarchists or anyone who disagreed with them; it’s the screaming hordes at the rallies and parades, tears streaming down their faces as they salute their leader; it’s the brownshirts burning ‘decadent’ books in the main square of respectable German cities and forcing old Jewish men to scrub the pavements with a tooth brush; it’s the bombing of Guernica and the invasion of Poland; it’s the starvation, persecution and murder of whole sections of the population in the vast killing fields of Nazi-occupied Eastern Europe and the Ukraine; and it’s those piles of skeletal bodies left to die of typhus and starvation at Bergen-Belsen, Buchenwald and Dachau, and the thousands of other camps and killing centres that to this day deface the very name of humanity.

We can debate whether the torture centres of Saddam Hussain and General Pinochet, the vile racism of the Confederate South or the Belgian Congo, and the grotesque violence of the Islamic State and Al Quaeda are a bastardised version of mid-century European fascism.  We can even ask what Nigel Farage and Steve Bannon have learnt from the experience of the fascist movements of the 1930s and 1940s.   But what we mustn’t do is use the word carelessly, as a one-size-fits-all term of abuse: lazy, provocative and counterproductive.

What we should do instead is recognise that the fight against fascism involved an entire generation: the German communists were the first to oppose the Nazis on the streets of Berlin and Hamburg; the International Brigades thought by fighting Franco they could stop Hitler;  during the war social conservatives like Winston Churchill worked alongside socialists like Clement Attlee; intelligent young men and women were code breakers at Bletchley Park while working class Tommies stormed the beaches of Normandy.   And lest we forget (a fact often forgotten in the United States), Hitler’s Germany was defeated above all by the Soviet Union, whose front line troops were hardly champions of the niceties of European civilisation: but then they’d seen in the devastated towns and villages of the Ukraine where that civilisation could lead.   It took all sorts to defeat Fascism, and we should hope that faced with the same challenge, we too would be anti-Fascists.

European Fascism can claim to be the most vile manifestation of mankind’s capacity for violence, cruelty and murder.  We should treat the word with more respect if we are to avoid the unbearable possibility of repeating it.

 

 

Peter Hall (1930-2017)

The scale of Peter Hall’s achievements is almost impossible to quantify.  This was the man who at the age of 25 directed the English language premiere of Waiting for Godot, at 31 founded the Royal Shakespeare Company, in his mid forties became the first Director of the National Theatre on the South Bank, while finding time to run Glyndebourne, the Royal Opera House, and direct television, film and dozens of productions in the West End and on Broadway.  In his later years he published his fascinating theatre diaries, wrote several terrific books about the theatre, ran his own production company (the Peter Hall Company), was the creative inspiration for the Rose Theatre in Kingston and directed a series of remarkable seasons at the Theatre Royal Bath.  He worked with all the great actors of his time, commissioned and produced the finest playwrights, and inspired, encouraged and employed hundreds of directors and designers, lighting and sound designers.  There’s never been anybody like him in the British theatre, certainly since Harley Granville Barker, or perhaps even Garrick.  It’s an astounding set of achievements.

But what was he like as a man?

I first met Peter when I was a raw undergraduate.  He’d summoned me to his office at the National Theatre because he’d heard through the grapevine that I was doing ‘good work’ and wanted to meet me.  I remember him taking the time to show me the masks that Jocelyn Herbert had created for his new production of The Oresteia.  I was struck by his enthusiasm, his energy, and the interest he took in this ambitious young whippersnapper: he was so obviously generous, open-minded and in love with the theatre.  Reading his Diaries I realise that I was probably light relief from his struggles with the unions or the Arts Council, and he was off to have lunch with Ralph Richardson or Tom Stoppard.   But such was the appetite of the man—unstoppable, infectious and quite remarkable—and it had a big impact on my subsequent career.

I’d been brought up on his productions and came to admire him for so many things, but above all his belief in the text itself.  This was a man who loved words, the exact turn of the phrase, its cadence and where the stress falls, whether in Shakespeare or Pinter, Beckett or Stoppard, and his commitment to the nuance of language lay at the heart of everything he did.  He used to tell a story about working with Dustin Hoffman on The Merchant of Venice and being delighted when Dustin turned up to rehearsal one morning declaring that ‘you can’t improvise this shit’.  For Peter, the detail of the language was everything.  A young director mocked him as an ‘iambic fundamentalist’: Peter was thrilled.  Words, words, words were everything.

But although Peter had a brilliant and genuinely scholarly understanding of the great writers, and his roots were in FR Leavis, Dadie Rylands and Cambridge University, his work in the theatre was never drily academic, and he had a showman’s instinct and loved the power, commitment and animal energy that the great actors bring.  He wasn’t scared of big personalities, big emotions, and we all devoured his stories about Larry Olivier, John Gielgud and Edith Evans, and his two favourites, Ralph Richardson and Peggy Ashcroft, or Noel Coward, Harold Pinter and Samuel Beckett.

I kept in touch with Peter over the years and was thrilled—and terrified—when he asked me to take over from him as Artistic Director of the new Rose Theatre in Kingston.  There were a lot of challenges about the Rose, but we worked together happily for six years, with him as Director Emeritus and myself as his boss (!), which is when I got to know him better.  And there I saw a man who, in his high 70s, still loved his chosen profession, who still cared about the great ideal of theatre of the highest quality which was accessible and open to all.  I’d been warned about his Machiavellian streak, but all I saw was passion, laughter and an almost childlike enthusiasm.

The Rose had had a difficult birth, and we were struggling to pay the bills, so one day at his favourite Italian restaurant in Chelsea I told Peter that we needed to find a play for his great friend, the finest actress of our time, Judi Dench.  He looked at me mournfully (as he sometimes could) and said, ‘yes, but she’s done everything’.  I suggested impishly that it would be fascinating to  have a Titania in A Midsummer Night’s Dream modelled on Queen Elizabeth I.  Within hours Judi had agreed and the Rose had its most successful production ever (which saved our skins).  And it was that combination of artistic intrigue, get-up-and-go energy and commercial nous that made Peter such an astonishing figure, and the undoubted architect of the entire edifice of the modern British theatre.

But no account of Peter’s life can be complete without paying tribute to his family.  He’d famously had a complicated private life and been married several times (with Nicki Frei, he told me, he’d ‘finally got it right’); but what I observed was a remarkable pater familias who adored his six children and nine grandchildren, and they in turn loved and respected him.  At first nights an entire row would be set aside for them.  Peter expected to be paid handsomely for his work.  But this was a man who loved life and knew how to live.  He was sensitive, inquisitive and astonishingly charismatic.

The theatre keeps changing and one generation’s firebrand is the next generation’s dead wood.  And, of course, much of what Peter stood for and championed has been challenged and rejected in recent times.  This is entirely natural and I think Peter in his old age understood that.  But it’s impossible to overstate just what an extraordinary contribution Peter made, not just to the world of the theatre, but to culture at large.  

We shall not see his like again.

 

 

 

 

 

 

 

 

 

 

 

 

Why it's wrong to call Theresa May a 'bloody idiot': my response to the cover of the New European

‘Oh he’s an idiot’; ‘don’t be idiotic’; ‘what a bloody idiot’.  This is the language of everyday life, isn’t it, heard in families and at work, on buses and on trains, in schools and offices, over and over, wherever you turn?  And what other term could be used to describe an action so obviously self-destructive as Theresa May’s decision to call a snap election to secure a fat majority, which she thought would allow her to push through the hard Brexit that so many of her supporters are keen on.  How could anyone possibly object to The New European splashing ‘bloody idiot’ all across its front page in scornful glee?  After all, isn’t that what the whole country thinks after last week’s fiasco?

So why did the phrase jump out at me when I saw it on the newsstand this morning and feel like a kick in the teeth.  More importantly, why do I think a progressive paper like The New European should be more careful in its language? My concern is the careless use of a word that carries with it a history of abuse and discrimination when applied to people with learning disabilities¾ people like my second son, Joey, who, aged nearly 21, has no speech, intractable epilepsy and very limited cognitive abilities.   

In his very agreeable Twitter spat with me, the editor argued that I was making a category error: after all the paper wasn’t using the word ‘idiot’ to abuse people like Joey.  And what, he asked, was the ‘politically correct’ term he should have used if ‘idiot’ was to be avoided.   I’m not sure if I can give him a clear answer, though perhaps ‘foolish’ or ‘misguided’ or ‘unwise’ is a less charged term.  Even to say that she acted ‘idiotically’ would have been better.  What I do know from bitter experience is that people with learning disabilities are the last forgotten minority and that our language should find ways of addressing that.  

And it’s striking that many other apparently progressive institutions haven’t processed this issue properly either.  The other day I saw a play at the Almeida in which one character called a black character a ‘nigger’.  There was a huge gasp of shock, and in the subsequent action of the play the man was shown to embody antiquated and undesirable attitudes, and eventually got his comeuppance.  It was certainly clear that the playwright thought the word was disgusting.  But in a play at the National Theatre someone was delighted that her child wasn’t ‘retarded’ and the comment didn’t raise a flicker in the audience, and had no consequences on the subsequent action.  My point is that we’re rightly sensitive to the use of the ‘n’ word because of its dreadful history, but don’t notice a word used endlessly to categorise and diminish a group of people who have little enough power or status already.  Progressive intellectuals don’t have a good good reputation when it comes to people who, whether objectively or subjectively, aren’t as clever as they are, and I think this needs to be challenged and, where possible, changed.

Intriguingly, the word ‘idiot’ was originally used to describe someone of no social status (‘a tale told by an idiot’ in Macbeth is a tale told by a very lowly servant or peasant) and the modern sense didn’t emerge until the seventeenth century (when the two were to conflated).  In the nineteenth century it, like ‘retarded’, was a technical term to describe people like my Joey.  It’s only in the last hundred years or so that it’s gained such a pejorative connotation, above all because it’s used to describe actions that others deride or think are insufficiently thought through.  After all, who wants to be described as an ‘idiot’ today?  Or have an ‘idiot’ for a son, for that matter.   For many people - me too, before Joey was born - nothing could be worse.

To be fair to The New European, it didn’t use any of the other much worse terms of abuse.  But by calling Theresa May a ‘bloody idiot’ it contributed, however subtly, however unknowingly, to an atmosphere which encourages us to dismiss people with Learning Disabilities as beneath contempt, as if the worst thing you can be is stupid, as if all the problems of the world are caused by people with cognitive difficulties.  For the fact is, surely, that Theresa May (and Donald Trump and Nigel Farage and Marine le Pen and all the rest of the politicians whom The New European quite rightly oppose) aren’t stupid, and by calling her - and, by extension, the army of dedicated Brexiteers - a  ‘bloody idiot’, the paper simply alienates further those who support her.  I like and admire The New European and, of course, defend its right to offend and use whatever language it likes, but I think to conflate arrogance, misjudgement and bad advice with something as extreme and real as idiocy isn’t really good enough.

Do I protest too much?  Perhaps.  All I can say¾ provocatively, perhaps ¾ is that if The Daily Mail insulted us Remainers by calling us ‘saboteurs’, The New European used a word that the modern, diverse, inclusive European society that the paper admirably champions, should leave behind in the dustbin of history, where words like ‘moron’, ‘imbecile’, ‘retard’ and ‘cretin’ so evidently belong. 

I’m hardly one to talk.  The other day I told my 8 year old daughter that she was being an ‘idiot’.  She’s been brought up with an older brother who cannot read, who has no speech, who has no voice in the world other than the one that his family and friends can lend him.  And she told me off in no uncertain terms, saying that it was a horrible word and that I should say sorry for using it.  She’s right and I¾like The New European¾was wrong.

 

ALL OUR CHILDREN before the critics get to it.

Well, tonight is the last of the previews for All Our Children.

Audiences have been small.  I suspect people fear—incorrectly—that the play is going to show disabled children being wheeled into gas chambers, and are nervous about coming.  Then, it’s a long run (closes June 3rd), so people haven’t yet got their act together.  And people are waiting for the reviews to see whether they want to stump up the money and time to come and see it. 

I’ve directed enough plays to know that there’s something to savour in that moment when audiences are watching with an open mind, when the actors are still exploring the text, when everybody involved is still working on the weirdly messy and creative process of giving birth to a new production.  It’s provisional, it’s free, it’s unencumbered by reputation or settled opinion. 

But having written this as well makes the whole thing doubly fascinating.

Various things have struck me: first the quality of listening in the audience.  There’s a real sense that this stuff matters, that there’s a conversation going on which, for all the historical and cultural distance, has a worrying relevance to our own times.  After all, the Nazi persecution of the disabled was driven, above all, by arguments over cost.  Looking after such people was just too expensive, it was said, and such views can sometimes be heard today.

The second thing is the sense that the fate of the disabled is just the most clearly defined example of a broader problem: the reduction of human beings to their productive capacity, and the contempt for those who can’t work, for whatever reason.  When an old friend gave me a huge hug after the first preview, I said that I’d written it for Joey.  He knew what I meant – he’s met Joey - but said it was bigger than that, and I suspect he was thinking of his wife, who has Alzheimer’s.

But the thing that’s really touched me are the responses from parents of children with disabilities.   Several have come already, and I know others who’re planning to come.  They know the scale of the struggle, they know how much it has radicalised them, they know how it’s made them question everything they thought they knew about society.  And their responses mean more to me than I can say.

On Saturday night the wonderful Caroline came with her husband.  She’s looked after Joey probably more than anyone outside of his family – through epilepsy, illnesses and all his vulnerability, as well as the joy, the laughter and silliness – and she was in floods of tears, not for Joey but for all the kids who need care, who need help, who in so many ways cannot help themselves.  And we agreed that if the play showed anything, it was that fighting for a better world had made a difference.  The courage, not just of Bishop von Galen but thousands of people ever sincewho’ve campaigned and fought for the rights of the profoundly disabled to live a decent life, has not been in vain.

It would be absurd to claim that disabled children face anything like this level of discrimination today.  Nevertheless, there is a huge amount to be done to ensure that they’re given the same opportunities as their able-bodied siblings.  It’s often said that you can judge a society by the way that it treats its most vulnerable.  If Nazi Germany failed that test in the most abject way imaginable, we should never forget its terrible lessons.

Who knows what the press will make of it.  It’s all such a bloody gamble, and no doubt some of them will savage it.  What I do know is that I’ve seen more this last week about the ability of 90 minutes of drama to engage with some people’s lives than I thought possible.  And I’ll always be proud of that. 

A guest blog from my Associate Director, Nathan Markiewicz, about ALL OUR CHILDREN

I have been lucky enough to call Stephen Unwin my friend for the last few years. Since we met we’ve worked together in numerous contexts: professional and academic theatre, large workshops and intimate rehearsals, we’ve even sat alone together in cafés clacking away at our laptops, sharing ideas and provocations—but we’ve never done anything quite like All Our Children. Over the years I’ve become close to the Unwin children too, sometimes I even feel like a member of the extended family. The play is dedicated to Stephen’s son Joey, who has learning disabilities not unlike those discussed in the play, and I have lately witnessed the intersection of two sides of Stephen’s world: theatre and disability rights.

Everyone knows that a playwright is a creative artist and a director is an interpretive artist, but what about when they are one in the same? While Henrik Ibsen was writing Ghosts, one of his most personal and intimate plays, he famously described the process in a letter to a friend: “To live is to war with trolls in heart and soul. To write is to sit in judgement of oneself.” The sentiment makes for a rosy soundbite, but the reality of dragging one’s subconscious out of the guts and onto the page isn’t quite so romantic. The flurry of transatlantic emails that Stephen and I exchanged while he was writing the final drafts of All Our Children never included anything as nearly as poetic as that—after all every problem in the theatre is a practical one. Our correspondence, and my observations during the first week of rehearsal, have led me to reformulate Ibsen’s dictum: To write is to wrestle with the trolls inside, but to direct one’s own writing is to truly sit in judgement of oneself.

The grim subject of All Our Children is T4, the Nazi program of exterminating the disabled, but the play isn’t really about that, any more than Ghosts is about sexually transmitted disease. As a young student of the humanities, I found the great question of Twentieth Century history impossible to answer: how one of the most progressive societies in the world managed to commit such atrocities. It was only an academic consideration anyway, wasn’t it? In recent years, that question doesn’t seem so hypothetical. After all, I come from the nation which brought you the iPhone and the Tomahawk Missile, the smallpox vaccine and crack cocaine, Barack Obama and Donald Trump. Contradictions everywhere.

It is this kind of cognitive dissonance which takes center stage in All Our Children. The play is a study of the emotional toll that such transgressions take on the perpetrators. It is not so much a history piece as a personal drama which asks us to consider our own complicity in the sins of our society. Nearly every day in rehearsal there is a moment when I wonder, “What would I have done?” A question which inevitably leads me to ask, “What am I doing now?”

In order to write a play, the author must face his own “trolls in heart and soul,” without self-consciousness, and in All Our Children, Stephen Unwin has certainly done so. As rehearsals progress, I see him “sit in judgement,” each day learning more about himself—the true pursuit of an artist. All Our Children is not only a play, it is also a love letter from the author to his son, Joey, and indeed to all our children.

'Trahison des Clercs'

I’ve just finished a fascinating book, called The Reckless Mind (2001).  Its subtitle is ‘Intellectuals in Politics’ and the author Mark Lilla charts the way six key European philosophers and thinkers made compromises—and worse—with totalitarian regimes through the twentieth century.  It’s a shameful story, as you read how Martin Heidegger and Carl Schmidt supported the Nazis, while Walter Benjamin, Alexandre Kojeve, Michael Foucault and Jacques Derrida all lent their support to varieties of Communist totalitarianism.  ‘Tyrannophilia’ was a real phenomenon, and some of the most brilliantly people of the time stand charged of it.

In an excellent new epilogue to the book, Lilla writes that the collectivist ideologies that attracted these intellectuals have all but disappeared, replaced by ‘a dogma for which we have hardly any name’.  This, Lilla explains, ‘begins with basic liberal principles like the sanctity of the individual, the priority of freedom, and distrust of public authority, and advances no further.  It is politically democratic but lacks awareness of democracy’s weaknesses and how they can provoke hostility and resentment.  It promotes economic growth with unreflective faith in the cost-free benefits of free trade, deregulation, and foreign investment.  Since it presumes that individuals are all that count, it has next to nothing to say about collectivities and their enterprises, and the duties that come with them.  It has a vocabulary for discussing rights and identities and feelings, but not class or other social realities.’  Lilla goes on to say that this ‘dogma is at once anti-political and anti-intellectual’ and ‘cultivates no taste for reality, no curiosity about how we got here or where we are going.  It has no use for sociology or psychology or history, not to mention political theory, since it has no interest in institutions and has nothing to say about the necessary and productive tension between individual and collective purposes.’  It’s an extraordinarily powerful critique of our own cultural mess.

Lilla's epilogue is dated June 2016, and was written before the Brexit vote and the election of Donald Trump.   So my question is this: what is the trahison des clercs of our own time?  How did leading intellectuals, artists and thinkers collude in creating an atmosphere in which the current wave of nationalistic, anti-science, anti-intellectual, popularism could thrive.  Who will the ‘guilty men’ be when the philosophical and cultural history of the first quarter of the twenty-first century is written?  It's not good enough just to blame the gutter press and the politicians.  Artists, intellectuals and thinkers have to examine their own consciences.  In other words, how many of us are Lenin’s ‘useful idiots’, clearing the path for the worst to triumph?  And which of us are able to articulate a resistance and lead the fight for better times? 

Historic attitudes towards people with Learning Disabilities and Epilepsy

Historically, people with learning disabilities and epilepsy have frequently been regarded as legitimate objects for scorn and derision and bullied, abused and persecuted as a result.  Most of the time, they’ve been dependent on the care of their families, as well as on charities of one kind or another but, where this has failed, they’ve been at the mercy of an uncomprehending world, often to disastrous effect.  In Britain, until the late 1960s, most families were persuaded to place their learning disabled child in a medical institution.  Indeed in many societies such people have (and still are) been murdered or simply abandoned as being too challenging, too distressing or too expensive.   Although the lives of most learning disabled people in Britain are better than they’ve ever been, we should not forget the history of persecution, nor the belief systems that made it possible.  Advances are all too easily reversed and we should never forget, as Edmund Burke warned us, that ‘All that is necessary for the triumph of evil is that good men do nothing.‘

Christianity, it seems, has come up with two contradictory ways of talking about parenting a child with a profound disability.  The first is that he or she is God’s punishment for past misdeeds.  Thus, an American politician, Bob Marshall, Republican Member of the Virginia House of Delegates, has repeatedly claimed that disabled children are God’s punishment to women who had aborted their first pregnancy.  And the devoutly religious, but deeply confused, Glenn Hoddle, the one time manager of the England football team, was sacked when he declared: ‘you and I have been given two hands and two legs and half decent brains.  Some people have not been born like that for a reason; the karma is working from another lifetime.  I have nothing to hide about that. It is not only people with disabilities.  What you sow, you have to reap.’  And there are historic accounts of terrible cruelty and abuse towards people with learning disabilities in various Catholic care homes and institutions in Ireland and elsewhere.

Fundamentalist Christianity doesn’t have a monopoly on such pernicious nonsense, however.  The explicitly secular Nazis labelled those with profound disabilities as ‘life unworthy of life’, or ‘useless eaters’, and the persecution, forced sterilization and subsequent murder of perhaps a quarter of a million of such people under the T-4 programme paved the way for the even greater genocide of the European Jews.  More recently, one of the most extreme animal rights philosophers, Peter Singer, a Professor of Bioethics at Princeton University, argued that human beings who fail to develop the ability to speak are in some ways less than human, on a par with animals.  In Practical Ethics he insisted that ‘killing a disabled infant is not morally equivalent to killing a person.  Very often it is not wrong at all’, basing his argument on the relative capacities of animals: ‘If we compare a severely defective human infant with a nonhuman animal, a dog or a pig, for example, 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.’ 

Closer to home, the UKIP councillor, Colin Brewer, argued that ‘disabled children cost the council too much money and should be put down’, while his fellow Kuiper, Geoffrey Clark, called for compulsory abortions of disabled foetuses. And a Tory deputy mayor, amazingly enough a retired GP called Owen Lister, argued that disabled children should be ‘guillotined’, explaining that ‘It's merely a matter of caring for them until they die.  The only difference between a terminally ill patient and a severely handicapped child is time.’ 

Perhaps most shocking of all—because it’s so surprising from such a card-carrying liberal—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 every one 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."

Woolf, of course, was simply mirroring the common views of the Eugenics Society, whose Chairman, the distinguished biologist Julian Huxley, wrote in 1930:

"What are we going to do?  Every defective man, woman and child is a burden.  Every defective is an extra body for the nation to feed and clothe, but produces little or nothing in return."

Many public figures, including birth control pioneers Margaret Sanger and Marie Stopes, politicians Winston Churchill and Theodore Roosevelt, and proud liberals such as H. G. Wells, George Bernard Shaw, John Maynard Keynes and Sidney Webb all supported eugenics.  Thankfully, it has now been dismissed as pseudo-science of the worst kind that, in Britain at least, does little but discredit the speaker.  More recently, the eminent geneticist and proselytising atheist Richard 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.

Lower level discrimination exists too.  Research by the leading health and social care provider, Turning Point, showed that a bias against those with learning disabilities is widespread in modern Britain.  The Foundation for People with Learning Disabilities concluded ‘that people are more comfortable interacting with people with physical or sensory impairments in social situations than they are […] with individuals with learning disabilities or mental health conditions’. The consultancy Lemos&Crane produced a devastating report entitled Loneliness+Cruelty about the bullying of people with learning disabilities, and the Papworth Trust has published research showing that 90% of people with learning difficulties have experienced hate crime or bullying, with almost a third saying that it takes place on a daily or weekly basis. And, finally, UNICEF concluded in 2012 that ‘Disability is not the impairment itself, but rather attitudes and environmental barriers that result in disability.  Children with disabilities are often ‘invisible’ to service providers, and they are at greater risk of violence than their non-disabled peers.’  This is all deeply dismaying stuff.

 

Epilepsy: Episode 2

They say it's not over until the fat lady sings and my post about Joey's epilepsy on Saturday was horribly premature. It was a dress rehearsal for the shit storm that greeted us early on Sunday morning.

When Joey is away from his residential college he wears a little sensor round his ankle at night which measures his heart rate (his BPM) and this is linked to an information screen and an alarm. On Sunday morning at ten to seven the thing started to bleep and I jumped out of bed and rushed upstairs. The poor lad had pissed himself and was trying to take off his pyjamas, but the seizures were kicking in and he was all over the place. I had managed to get his top off and his pyjamas trousers had fallen round his ankles, when the full on status epilepticus kicked in. Still in my boxers and teeshirt I struggled desperately to shift him back onto his bed but failed miserably. I glanced over his shoulder at the screen and his BPM was at 140 something (about twice as fast as it should be) and in all this mayhem I got an image of the dead Christ being taken down from the cross: pure naked agony, with me as some kind of hopeless cross, his pyjama trousers as a slipped loin cloth. Once a Catholic, I suppose, but he was certainly in real trouble.

So I shouted to G who came rushing upstairs with the emergency meds and together we just about managed to drag him onto the bed. She then squirted the first round into his mouth as I held his head back and his mouth open. We then started to count the minutes as he shook and shook and shook. This isn't just upper body seizures, it's everything, all over right through to his toes and feet all bent out of shape, grotesque in its twists and contortions. Seven, eight, nine, ten minutes and still he was thrashing. And so we give him the second round and, as attentive readers of my last post will know, called for an ambulance. But still the seizures went on, for something like half an hour, maybe 40 minutes. Typical of Joey, they stopped just before the ambulance crew turned up and we were able to give him his full medication and ourselves a cup of tea. He very slowly returned to normal, smiling shyly and licking my hand. Joey was finally back. 

But this time, of course, he had to go into hospital and after careful discussion (including on the phone with a brilliant out of hours GP), Joey and I went off in the ambulance through the beautiful early Spring Norfolk sunshine. As we drove past Holkham Beach I remembered that we'd promised Joey that we'd walk to the sea. But instead, here he was drugged up to the eyes, asleep on a stretcher. The hospital in Norwich was great and eventually he was discharged and we managed to get him back to his college in one piece and they tell me that today he's fine. God save the NHS and let's keep it free at the point of delivery was my conclusion on Saturday, and the same is true today. 

But I found myself thinking about something else too, and I really don't want this to sound self-indulgent or self-pitying. But a severely disabled child has a huge impact on his family, on the people who love him and everyone who comes into contact with him. And that, believe me, can be seriously bloody hard. I spent half the night lying next to Joe on Saturday worried that he was going to have another clusterfuck of seizures and that the alarm wouldn't work. G and I are completely knackered and found it hard to get back to work today, and I ended up shouting at poor little Bea (8), Joey's half sister, in exhaustion and, of course, grief and delayed shock. It's hardly surprising that there's such a high incidence of divorce, nervous breakdowns and poverty among families with severely disabled kids and the impact can be huge.

And we all have to recognise that there are no miracle cures for a kid like Joey, and the thousands of others like him. This ain't no movie, no West End show, there are no simple happy endings or consolations. And, no, epilepsy isn't a punishment from God for my many misdeeds, nor are the angels speaking through him when he has seizures. It's just hard and frightening stuff. Shit certainly happens.

But there are some brilliant organisations which help us get through. I'm the insufferably proud Chairman of KIDS, a national charity which offers an amazing range of services. Imagine, for example, being a couple looking after a profoundly disabled child 24 hours a day, and once a month your child is taken somewhere where he's looked after, given a great time and is totally safe, while you can give your marriage another chance. A short break like that is sometimes the one thing that stands between having a decent life and total bloody chaos. Or imagine being a parent of a disabled baby and feeling completely confused by the whole situation (I was that) but getting the chance to talk to, and learn from, parents who've done it before. This stuff makes a difference. Really it does.

Support KIDS if you can, and other charities like them: Joey will thank you, probably with a tickle, but, if you're really, really lucky, with a head lick too. He's that kind of guy.

Calling the ambulance

Those of you who're gripped by my every utterance on Facebook will know that my Joey has epilepsy. You may even remember our trips to various hospitals over Christmas. Well, we're in Norfolk right now for half term and have had another adventure today. 

I gave him his usual drugs at 7 this morning and it was immediately clear that they weren't really working. And so G and I decided to give him the first dose of his emergency medication. He eventually came round (stopped seizing) and all seemed good. But then at about 11 this morning, he started again and it wouldn't go away, and so, after some agonising debate, we gave him the second dose of the strong stuff and - as instructed - called for an ambulance. 

Please understand why this is something we really didn't want to do. The idea of spending all Saturday in A&E in King's Lynn isn't our idea of fun, especially if the epilepsy had cleared and he was just being monitored. But we did it because that's the protocol and we know that you can't fuck with epilepsy. But, inevitably, by the time the ambulance arrived (North Norfolk is a big place), Joey was giggling and smiling and back to normal. The brilliant team took all the usual measurements (blood pressure, heart rate etc) and, after a careful discussion, headed off without him. And since then everything's been fine (touch wood, God knows what tomorrow will bring). 

But what struck me, as ever, was this: imagine if our decision had been affected by cost. I'm feeling broke at the moment and imagine if I'd had to stump up £1000. It's all too easy to say that Joey is my responsibility and so I should carry the cost (or insure against such eventuality). But although I'm pretty seasoned at dealing with Joey's epilepsy, I'm no neurologist or paramedic. We took the decision to call the ambulance to be on the safe side, and I know that we were right. But if it was going to cost a ton of money, we might well have gone without. And that could have had the most serious consequences imaginable.

So I think we'd better keep the NHS free at the point of delivery, hadn't we? We all need it like that.