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.