Danny's People, page 1
Praise for Danny’s People
‘A beautifully written and wonderful insight into the challenges, and yes, the rewards of autism. We all need to read this book and be inspired by its uplifting message.’
Jon Snow
‘Moving and deeply thoughtful, Virginia Bovell writes about happiness and struggle with an evenly light touch. She has managed to entwine politics and heart, theory and lived experience so simply and seamlessly that each seems inseparable from the other. At last!’
Sally Phillips
‘Virginia’s love for her son Danny is an inspiring testament and a celebration of neurodiversity. This important book dismantles prejudice and shines with honesty and truth.’
Manni Coe, author of Brother. Do. You. Love. Me.
‘A remarkable book that raises deep questions. Her [Virginia’s] compassion for autistic people – in all their multiplicity – and the dedicated people who support them shines through. This book will inspire and educate.’
Prof Simon Baron-Cohen, Director of the Autism Research Centre, University of Cambridge
‘A book of fierce compassion, wisdom and love – inspirational.’
Dr Gavin Francis, author of Adventures in Human Being
‘An impassioned plea for better provision for autistic people, as well as a moving and unsparing account of the joys and challenges of raising Bovell’s autistic son… Danny’s People radiates with love and Bovell’s warm voice.’
Jill Dawson, author The Great Lover
‘Virginia and I first met when we took on the mammoth task of setting up a school for autistic children in the late 90s. Danny’s People is both a rollercoaster of emotion and a wonderful resource. It confronts a question that haunts parents like Virginia and me: who will look after our children when we’re no longer around?’
Dr Anna Kennedy OBE, author of Not Stupid
‘A beautifully written and searingly honest account of the highs and lows of raising a disabled child… a must-read for anyone who would benefit from a critical and empathetic reflection on a range of debates and controversies in the field of autism.’
Professor Laura Crane, Director of The Autism Centre for Education and Research at the University of Birmingham
‘Virginia Bovell’s marvellous book goes to the heart of what it takes to parent a profoundly disabled young man. It charts with tremendous care and unflinching honesty the fearfully challenging health complications faced by her beloved son, Danny, but also the radiant joy that he inspires in so many… Danny’s People is an important, honest and beautiful book.’
Stephen Unwin, director and former chair of Kids
‘A profound, insightful and deeply moving book, Danny’s People explores the human relationships that lie at the very core of any thriving life… The result is not just one of the best recent contributions to autism research, but one of the most compelling books that I have read in many years.’
Liz Pellicano, Professor of Autism Research, UCL
‘Virginia’s humanity, warmth and dedication to doing whatever she can to help those who are marginalised and particularly those with learning difficulties or who get the label of autism, shine through. Her son Danny’s life and experience leaps out of the pages, helping the reader see into the uniqueness of the world he inhabits and beyond the superficiality of sympathy and stereotypes.’
Dr Sami Timimi, author of The Myth of Autism
CONTENTS
Author’s Note
Prologue
PART 1 NEW LIFE
1 Danny
2 An Introduction to Autism
3 No Man’s Land
4 Kidzmania
5 On the Margins
6 Sarah, and the Challenge of Inclusion
PART 2 CONNECTIONS AND CAMPAIGNS
7 Early Intervention
8 ABA: Good News?
9 ABA: The Controversy
10 TreeHouse
11 Su and Elliot
12 Marching
PART 3 SOLIDARITY AND CONFLICT
13 Donna, Daniel and Paul
14 The MMR Controversy
15 MMR and Simon Murch
16 Corey
17 Four Prayers
18 Depression and Identity
19 Debbie
20 Reflections
PART 4 THE WHIRLWIND YEARS, 2006–9
21 John
22 Larry, and the Wider Autism Movement
23 Tribalism
24 ABA Tribes and Michelle Dawson
25 Arsenal and Arsène Wenger
26 The Queen
27 Dinah
28 The Wrights and Rights
29 Groundhog Years
30 Lee
PART 5 THE BIG QUESTIONS
31 Helen Keeler and Eugenics
32 Ingrid
33 Light and Shadow
34 Home and Away
35 Surgery
36 Spring and Summer 2013
37 Crisis
PART 6 UNCERTAINTY AND BELIEF
38 Disagreements and the Empathy Question
39 The Future of Autism
40 Valuing Learning Disability
41 How Things are Now
Notes
Select Bibliography
Acknowledgements
AUTHOR’S NOTE
‘How can I find my people? […] I’d like to find my “tribe”.’
Adult recently diagnosed with autism spectrum disorder, Quora
This is the story of my son Danny and me, and the people and ideas we have encountered on our journey. Our story is personal of course, but it connects with the lives of others who have been impacted by autism and disability more generally, not to mention fundamental questions of individual and group identity. Many people have strong feelings and beliefs in these areas, and I have had to confront my own. In so doing I have struggled to reconcile what often appear to be opposing standpoints and allegiances. This book emerged from the crucible of that struggle.
PROLOGUE
When I was an undergraduate, I found myself with friends standing in a freezing-cold shopping centre, wet with snow and sleet, seeking signatures for a Spastics Society (as it was then titled) petition requesting improved services for disabled people. A young woman from the charity had come to speak about the campaign and to ask for volunteers, so my friends and I donned scarves, gloves and clipboards and braved the elements.
It was remarkably easy to elicit signatures. I do not think this was just because we were a pitiful sight in the cold, teeth chattering as we explained the cause. What struck me forcefully about that freezing morning was how many people told me that they had a relative or a friend with a disability. They were eager to sign and wanted to share their stories. The message came over loud and clear that disabled people are ubiquitous – but invisible.
Outside of the mainstream world, on the fringes, they may be everywhere, but they – or their impairments – are hidden from public view and, thus, mainstream consciousness. That same shopping centre in midsummer would appear no less devoid of disabled people than it was on that snowy morning. Wherever I went, to lectures, to parties, to clubs, on trains and buses, just going about life, I met virtually no disabled people. I had no disabled friends. If I had examined my assumptions, I would have encountered the patronising view that the disabled were a poor unfortunate minority languishing somewhere indoors, in families of people I did not know or in care homes and hospitals I had never visited. They were a tragic minority to be pitied, living as if on the other side of the world.
And yet, the lessons of that morning stayed with me: the surprise of learning that disability runs throughout the fabric of our species and that the full story of the world we live in extends way beyond what we see and hear upfront. There were barriers preventing disabled people from coming into full view and – I would later learn – such barriers included environmental and attitudinal obstacles that were quite separate from any impairment that an individual might have.
Despite this glimmer of awareness, a question I did not ask myself was this: was it a political act, to seek signatures for the petition, or was it an act of compassion, perhaps, for some, of condescension? Only many years later would this question become central to my life.
As the mother of a disabled child, my campaigning activity initially focused on the traditional arenas of politics in the UK – holding meetings with government ministers, MPs and senior civil servants, organising fringe events at party conferences, lobbying professional bodies and talking to journalists. It would take far longer for the issues of power, status and identity to find their way into my home, my life and my very sense of who I am and who my son is. My impression of what it is to be a thriving human versus an inadequate human, of being someone who is ill versus someone who merely fails to conform to wider societal expectations. I would need to hear from different people, read their accounts and meet them.
And after that, I would need to tell Danny’s story.
Part 1
NEW LIFE
‘There’s not just love in this story, but luck. There is both bright luck and dark luck. […] Dark luck is not bad luck. Luck can be shrouded and half-shadowed, if its outcome takes years – even half a lifetime – to be revealed.’
Riva Lehrer, Golem Girl
Many of us create narratives about our lives, and in writing about my own I am no exception. Yet I do not know how – or even if – Danny goes through a similar process of recall and reflection. If I were to ask him about this, I believe that he would not understand the question,
But I have persisted, for better or worse.
I hope that, were he to comprehend the content of these pages, Danny would forgive me for any misjudgement or intrusions into his privacy. I hope he would be pleased to share with you the surprises and discoveries, the sheer good luck that has prevailed over the setbacks, and the love that continues to carry us forward.
1
DANNY
The story starts in the spring of 1993. I am pregnant for the first time, and here sit Nick and I, just married, at our first antenatal meeting.
We had met seven years earlier. At that time Nick was a struggling writer, scraping a living as a part-time teacher in an English language school. He introduced me to Arsenal Football Club and new kinds of music, books and films. He was funny and clever and patient with my restlessness, as I worked my way through several attempts at a career: nurse, health visitor, health promoter, health economist and, finally, social policy researcher at the London School of Economics.
Now – having weathered various storms, and just at the point when Nick’s first book, Fever Pitch, has been shortlisted for the prestigious NCR prize for non-fiction – we are expecting our first baby. The scene is set for a new life, a new chance for us, new friendships, new futures. And so here we are, introducing ourselves to the other couples.
All first children represent a turning point in the lives of their parents, and the first antenatal class is a kind of landmark. But as I return to the scene, what stands out is the significance of meeting Ingrid and her partner Hugh.
Ingrid and Hugh were instantly likable. Both were tall and striking, benign, self-deprecating and gently humorous. Immediate connections were reflected in later discoveries: Hugh and I were both from Sussex, and we found out that he went to school with childhood friends of mine. Ingrid, in contrast, had come to England from South Africa, to escape apartheid and to continue the struggle by working in immigration law. We were two couples in love, full of hope for our babies and our relationships, and – as luck would have it – living within five minutes’ walk of one another in Highbury, the home of Arsenal Football Club.
*
Ingrid and I went into labour on the same day and stayed on the same ward at Homerton Hospital. Ingrid delivered Jack first. Danny took longer – he got stuck, and I had a fainting episode which was treated as a fit, so I, and therefore Danny, was pumped full of anticonvulsants. The epidural sent my blood pressure falling inexorably downwards. I began to see double and the medics around me sounded worried. I wondered if I would die and, without panic but with a good deal of regret, lamented the possibility that I’d never know what would happen to these beloved people – Nick and our baby.
But I was very much alive and awake for the emergency Caesarean, with Nick at my side. After the preceding drama, the procedure felt surprisingly relaxed. There was chat about football (our anaesthetist was an Everton supporter), what name we might give our baby and how much we loved the NHS.
And now here he is, our little Danny, perfect in my arms and feeding from my breast. Sweet and beautiful and beloved.
When we left hospital it was raining and it continued to rain for what felt like months and months. But it was only rain. Nick would write of the happy time of Danny’s early days and weeks, and I was one of the lucky ones who, despite being physically depleted and exhausted, did not fall prey to the ravages of postnatal depression.
‘It’s like falling in love,’ I explained to a friend. I hope I didn’t sound smug – perhaps she longed for a child herself. But I just told it how it was for me. Danny was the bringer of joy, the encapsulation of all that was lovable and beautiful and tender. For the first time, I appreciated the profound secular meaning of the Christian nativity scene: to worship a baby in a cold, dark world is like suddenly finding new hope and light and love. The whole world is transformed.
Ingrid and I would meet up weekly, sometimes with the other antenatal group mothers and babies, and sometimes just together with Jack and Danny, asleep in their car seats or latched on for a feed. The babies smiled on cue at six weeks, gained weight and absorbed our hearts and minds so much that the world outside seemed to recede into the distance.
Yet midwinter was all around. Nothing grandiose or historic was happening in our comfortable corner of North London. There was food on the table, Nick was writing his second book, we were financially secure. And yet within weeks, the left side of Danny’s face started twitching and he was showing muscle weakness down his neck, left shoulder and arm. I felt the cold nighttime of anxiety for Danny start to creep in when the doctor referred him to a paediatrician for these symptoms, which were a greater worry at that time than the fact that he seemed to find it so very hard to digest his milk.
During these months, my mother would phone and tell me of her concerns for my father and his increasing confusion – which turned out to be the onset of dementia. I was torn between the undertow of these dual anxieties and the desire to hold on to all the good around us. How to carry these worries with lightness, so as not to feed the dark, while at the same time giving them due attention? To be grateful for the comfort and the security we were lucky enough to experience, while at the same time meeting the challenges of the future head-on?
There was much to be grateful for. And in retrospect, what stands out at the top of the list of good luck – our family’s, as well as that of Ingrid, Hugh and Jack – is this: we had brilliant GPs. Our homes happened to be within the catchment area of a truly outstanding doctor’s practice that never, ever failed us. From the first new-birth visit to our home, and the regular baby clinics at the surgery, through to the more specific and costly demands we would all be making on the practice in due course, our families benefited from a truly excellent manifestation of the NHS at its best. All the doctors seemed kind and hard-working, as did the nurses, healthcare assistants and receptionists. I couldn’t help noticing also that the senior partner, who combined academic and clinical work, was resolutely opposed to the idea of turning the NHS into a market.
Danny was assigned to Dr P. If we could have asked for the perfect GP, the answer would have been this dark-haired Irishman who listened attentively and with a stillness that made you think you were the only patient he had to see that day. And who, having listened, made you feel better just by the comforting, gentle tone of his voice.
In those early days I had no way of knowing the extent of this enormous piece of luck that had come our way. But even then there was gratitude, because we visited the surgery more regularly than your average mother and baby. And each time, I came out wanting to don the old badge from my student nursing days in the 1980s that said: ‘I ♥ NHS.’
*
In the first two months of his life, Danny’s facial asymmetry, the weakness of the muscles on his left side and the slight twitch of his face became temporarily overshadowed by an impending operation to repair hernias on both sides of his groin. He would have to undergo a general anaesthetic.
Danny’s Auntie Gill (Nick’s sister), on hearing that Danny’s first return to hospital was thus to take place in December 1993, sent him a soft toy of Raymond Briggs’s beloved Snowman as a companion. This act of giving precisely the right thing at the right time, of solidarity and compassion, was entirely characteristic of her. But even Gill could not have foreseen how big a role this and successor Snowmen would play in Danny’s later life. For there have been more Snowmen since that first soft toy of December 1993, growing larger as Danny himself has grown. Nowadays they have to be custom-made and ordered in bulk so that as one wears out, another is ready to step in, to be his constant bedfellow, pillow, comforter and support. Three smaller ones perch on his living-room windowsill. During the first Covid-19 lockdown, when Danny was unable to see his family through week after interminable week, he took all of them to bed with him.
Just one sufficed at the time of his hernia repair.
My previous nursing experience made me determined to be matter-of-fact about the operation. After all, it was not complicated or life-threatening surgery. Because of this gung-ho attitude, Nick and I jointly agreed that it would be sensible if only one of us was with Danny during his brief stay in hospital. That way, Nick would be able to stay at home enjoying, for the first time in several weeks, an opportunity to write without the usual distractions of a young baby and wife in a small house, and I would handle the parallel work of being with Danny at Queen Elizabeth Hospital.
