When I first heard of the impending crisis my initial instinct was to jump into my car, drive forty minutes up the motorway, bundle my Joey in, and bring him back to my flat, where we could lie on the sofa watching endless reruns of Monsters Inc. until the whole ghastly thing had gone away. It was a classic left side / right side of the brain moment, as I struggled to work out where he was actually safest, and I decided to leave him where he was. My daughter was still going to school, and God knows whether I was an asymptomatic carrier. But now, of course, with the lockdown, I can’t go and see him, and I don’t know when I’ll see him again. It hurts, as I’m sure you can imagine.
So why am I telling you this? After all, we all have our own nightmares and we really mustn’t compete with each other for victimhood. But, you see, in some ways my Joey is very different: aged 23, he has severe learning disabilities (no speech at all), intractable epilepsy, and is on the autism spectrum. He communicates his needs with a mixture of simple Makaton sign language and stubborn persistence. He’s a happy young man, who loves the countryside, going on big walks, and hanging out in the natural world: trees, flowing water and animals (all barred at the moment). He’s eccentric, intriguing and infuriating, with a dazzling smile and an engaging innocence that brings out the best in people. He’s at the heart of a big family, and he’s loved and celebrated by many people, even by some who don’t know him.
Self-isolation isn’t an option for Joey. He needs help with pretty much everything: cooking, medication, dressing and personal hygiene. He lives in a terrific ‘supported living’ unit, part of the remarkable St Elizabeth’s Centre in Hertfordshire, and is looked after by a rota of carers (from all around the world): they’re well managed, properly trained and driven by a deep ethic of care. They’re scrupulous in their procedures and I have every confidence in their professionalism. But the brutal fact is—and I don’t blame St Elizabeth’s for this—they don’t have the right protective equipment yet and haven’t been tested for the virus. Some are quite rightly self-isolating but, with a shrinking pool of care staff, are under increasing pressure. And so, like everyone in care homes at the moment, my small and fragile Joey is at greater risk than I am. By day I calm my nerves with rational analysis, but all too often howl into my pillow at night.
Like all moments of profound crisis, this brings out the best in people—and the worst. This was vividly brought home to me when I rang Joey’s house the other day: “Yeah, we’re alright, we’re always alright, Joey’s laughing, so we must be alright,” was the wonderful, indomitable, reassuring answer. But the care manager’s account of the difficulties of getting food and other essentials because of the behaviour of more fortunate people was a lot less heart-warming, to put it mildly.
The uncomfortable truth is that an emergency like this exposes unconscious bias. Thus, there was an outpouring of justified rage when it was discovered that in the National Institute for Health and Care Excellence’s (NICE) triage guidelines, learning disabled people were placed just above patients with extreme life-threatening illnesses. Now while it’s true that the learning disabled do die earlier than the average, especially in hospitals, it’s not their learning disabilities that kill them, it’s ignorance. And I’m afraid that NICE’s guidelines (which they’ve now thankfully changed) showed the same lack of understanding that families so often encounter.
These are, surely, revolutionary times and we can only hope that, as we emerge, fundamental change will follow. After all, it was the end of the Second World War that ushered in the NHS, and our every waking breath must be devoted to ensuring that the recession that will ensue doesn’t take us into the even darker times that consumed Europe in the 1930s. But is it pie in the sky to dream that this extraordinary moment might banish the great lie that there is ‘no such thing as society,’ and offer us the chance to reset our values? Dare we dream of better times? I think my Joey offers us two essential insights.
The first is that if we don’t find a way of supporting, celebrating and investing in the care of the vulnerable, the core values of our society will wither and die. We rightly applaud the heroics of our NHS, but if, as Gandhi insisted, ‘a nation’s greatness is measured by how it treats its weakest members,’ this crisis sets us a profound moral challenge. For decades our society has consistently undermined the care profession, but if we don’t celebrate, reward and champion those people who look after us in our frailty, we cannot claim that we live in a society which values all people equally. Carers matter to us all, whoever we are, however strong, however healthy, and this crisis shows us that in the starkest form imaginable.
What Joey will also tell you—and he will, if you engage with him properly—is that he’s as deserving of a decent, happy, safe life as anyone is. The Nazis condemned people like him as living ‘lives unworthy of life,’ but if Joey can teach us anything it’s how monstrous such thinking is. At another moment of national crisis, the great Leveller, Thomas Rainsborough, declared ‘that the poorest he that is in England hath a life to live as the greatest he.’ Now’s the time to ensure that Rainsborough’s vision extends not just to the poor, but the vulnerable and the weak, even to people like my Joey whose views can only be heard by those who are prepared to listen. For our society desperately needs to recognise that people like Joey are central to what we are as humans. They are our brothers and sisters, our fathers and mothers, our children and our grandchildren. They are us and we are them. And if we don’t remember that, we are doomed.
Listen to Joey. He’ll show you the way.