Then came this week’s visit by Pope Leo XIV to France, which has been marked by the Bishop of Rome’s constant, special solicitude for those whom medicine once branded “retarded.” Will it spur Christians, and perhaps others, to return the R-word to the realm of taboo? And would such a social shift have any wider positive effect, besides marginally curbing the coarseness of daily language? 

Let us pray. And not just for the sake of being decent. But because in the age of AI and “agentic” machines, a culture that mocks and denigrates human frailty — that reduces worth to intelligence and agency — may soon target many people, including those who today consider themselves gifted and use the R-word with abandon.

Much has been made of the surprising resurgence of French Catholicism, amply on display in the 800,000 souls who attended the Roman pontiff’s Mass at the Place de la Concorde and the long lines of penitents waiting to pour out their troubled consciences to priests in open-air confessionals. Yet if there is a unifying theme to Leo’s French trip, which continues through Monday, it is the inviolable dignity of the vulnerable, including the elderly, the infirm, and people suffering from mental and intellectual disabilities.

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On his way through the streets of Paris, Leo stopped the pope-mobile to bless a severely disabled girl, creating what is likely to be one of the defining images of his reign. At his Paris Mass, the altar servers included six young men with Down syndrome. And speaking at Lourdes, where an apparition of the Virgin Mary has long drawn those seeking healing beyond what medical science can achieve, Leo launched a jeremiad (in the true sense of the word) against abortion and assisted suicide. The former, selective abortion, has all but eliminated people with Down syndrome from some jurisdictions. The latter, assisted suicide and euthanasia, increasingly ensnares people with intellectual disabilities like autism.

“No human law should ever make you lose the certainty of your dignity,” the pope told the patients and their carers at Lourdes. “You are not a burden. You are the beating heart of our humanity and a precious treasure for the Church.” He added: “It is precisely in the name of this inalienable dignity of the human person that we must reject the temptation to cause death under the guise of false compassion. It is impossible to regard causing death as something normal.  What is legal is not necessarily moral.”

Defending vulnerable life is, of course, nothing new for Catholicism. The Didache — one of the earliest compilations of Church teaching, generally dated to the late first century — includes the injunction: “do not abort a fetus or kill a child that is born.” In modern times, that consistent, maddeningly unbending ethic of life has occasioned some of the Church’s most morally heroic moments, even and especially amid its failures. 

In the Nazi period, for example, when too many of the German bishops kept mum about the Holocaust and otherwise failed to resist Hitler, one prelate stood tall for the cause of life. I’m speaking of the bishop of Münster, Clemens August Graf von Galen, who, on Aug. 3, 1941,  delivered a homily condemning Aktion T4, the Third Reich’s program of involuntary euthanasia targeting the physically and neurologically disabled and mentally ill. 

A massacre of the innocents was afoot, von Galen charged, “because in the judgment of some official body, on the decision of some committee, they have become ‘unworthy to live,’ because they are classed as ‘unproductive members of the national community.’ Poor human beings, ill human beings, they are unproductive, if you will. But does that mean that they have lost the right to live? Have you, have I, the right to live only so long as we are productive?”

That productivity aspect is the heart of the problem today. In the postwar period, overt eugenics and overtly coercive euthanasia were out of the question, having been tainted by association with the Nazis. But the Church now detects the same impulses lurking under the guise of “choice” and “compassion” and the obscene phrase “death with dignity,” used to describe doctors dealing death. Scratch through such cant, the recent pontiffs have argued, and you find the same ideas: that worth lies in productive intelligence, the capacity for autonomous choice or “agentic” activity (to use today’s parlance). The distance isn’t far from that premise to the conclusion that some lives just aren’t worth keeping around. 

In his 2015 encyclical, Laudato Si’, Pope Francis warned against a “dominant technocratic paradigm” that only finds value in “a subject who, using logical and rational procedures, progressively approaches and gains control over an external object.” People with intellectual disabilities frequently fall short of this paradigm, but so do many others. So do babies in gestation and young children. So do the elderly. And so do people undergoing chemotherapy. All of us spend great stretches of our lives in various states of vulnerability and incapacity and unproductivity.

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Which brings us to Leo XIV. The new pontiff has so far devoted the lion’s share of his teaching to the moral challenges posed by AI. He and the Church aren’t opposed to automation. On the contrary, emancipating man from “arduous, repetitive, or dangerous” labor, as his encyclical on AI put it, has long been an aspiration of classical and Christian civilization. Insofar as AI achieves this emancipation, it is to be welcomed — but not when it intrudes upon distinctly human activities or if it recasts our conception of human worth.

That last danger is already present in practices like selective abortion, euthanasia, and assisted suicide, and is likely to be greatly magnified in the age of AI. Indeed, during his visit to France, Leo explicitly linked the two. Speaking on Friday at a gathering of UNESCO, he commented, “The paradox has become increasingly evident: while ‘intelligence’ is attributed to computational systems, we struggle to recognize the inalienable dignity of human persons, whose lives are judged according to the criterion of efficiency and, when deemed no longer productive, are rejected and discarded.”

A large language model can never replicate human intelligence, which, as Leo has noted, includes wisdom and other depths that are impenetrable to the machine. Yet in terms of raw computation and recall, my Claude app is already far more capable than I. Compared to it, I am a “retard.” Is it that hard to imagine a not-too-distant future in which an LLM in the employ of my insurer decides I should no longer receive medical care in light of my mental shortcomings?

Renouncing the R-word won’t forestall such a future, of course. That will take collective political action. And there are plenty of people who are perfectly polite in ordinary discourse, even as they pursue monstrous ends in politics or business. But each time we do use that word, we not only trample the dignity of some of the most defenseless people among us, but strengthen the technocratic paradigm that, left unchecked, could soon discard many or even most of us.

It took me a little while to figure it out. More than just a way to establish closeness, Dovie’s intellectual ribbing shattered the pitying mentality and saccharine tone — the false piety — that can sometimes characterize the way we relate to people with severe disabilities. It was as if to say: here I am, no different from you — unable to walk or to breathe unassisted, yes, but capable of disagreeing and being disagreed with. Have at me.

Dovie, who died last week while in a coma at age 35, spent his last conscious days railing against the assisted-suicide and euthanasia laws sweeping the democratic West. When New York state lawmakers took up an assisted-suicide bill last year, he published a viral essay in UnHerd urging Gov. Kathy Hochul to veto it. “As a young man with disabilities,” he wrote, “I fear what this state should become if suicide-by-doctor becomes law.” 

He worried that with doctors authorized to prescribe death, people like him would be nudged to choose suicide by health systems and public attitudes that view some lives as too difficult and too painful to be worth continuing. He saw this culture of death menacing his own existence. 

Dovie’s life was difficult and painful in many ways. He was born with a genetic disorder called nemaline myopathy. It basically meant that he had catastrophically low muscle tone, leaving him unable to walk. Speaking was only possible in between drags on an air tube, and then in a voice that barely rose above a thin rasp. Yet his life — his indefatigable, irrepressible drive to partake of all that it means to be human — bore witness against the culture of death.

I first met him through a mutual friend — Professor Robert George, the great Princeton ethicist — after an event on the rise of anti-Semitism, held at New York’s Center for Jewish History in 2017. As I would soon learn, he had very little patience for small talk and pleasantries. That first time, he cut to the chase. “We’ll never have a proper discussion about anything,” he began, “until we learn that rational people may have perfectly rational reasons for believing things we find horrible.” 

OK, but what are you talking about? 

“Gun control and abortion,” he shot back. “According to one side of these debates” — a deep drag on the air tube — “I have blood on my hands for supporting the Second Amendment” — another drag — “and I’m only motivated by the Bible to oppose abortion.”

Dovie debated vigorously, on first principles — rare among our cohort but natural for one reared on traditional Jewish learning. In those days, both of us still adhered to the tenets of traditional Reaganite conservatism. In the decade that followed, he stayed there, more or less, only becoming slightly more Trump-friendly. Whereas I gradually shifted to a more heterodox position that embraced labor unions and thicker welfare nets — conservative social democracy or blue Labour are probably the best labels for it. 

Dovie would have none of it. “Unions?” he scoffed. “That’ll just mean the people who care for me will cost more and work less!” And he wouldn’t relent in such discussions, no matter the social context. It’s what made his company equal parts maddening and enjoyable. Dovie offered no deference to social rank or politesse, and he expected none for his disability. He would have been disappointed in me if I backed away from my pro-labor position on account of his needs. And so we argued, by phone and in person, almost to the end.

Dovie befriended with no less vigor. Typical for a Millennial and one with his physical limitations, many of his friendships took shape online. But as much as possible, he tried to drag them into the real world: to force his e-friends see the man behind the tweets. He unburdened himself with relative ease — “Am I likable? Like, do you grit your teeth around me?” Yes, you are — and invited similar openness. He drank life fully, somehow, and strong bourbon, too.

Dovie fell in love. Attending conservative galas, he’d often come accompanied by young women who were all too happy to assist him. Sometimes, though, he wanted more than assistance. He wondered out loud to me if he had a shot with some of them. “I need to get married, dude,” he’d say. His romantic side attested to Aristotle’s observation that man’s domestic impulse is even stronger and more foundational than his political impulse. But in Dovie’s case, that impulse would remain frustrated, as far as I know. I could help him get published, but I couldn’t help him there. Here, I may have succumbed to that pity I knew he hated. 

And Dovie believed. Though born to an Orthodox rabbinic family, he began exhibiting a strong attraction to the Christian faith in the late 2010s. At first, it was merely a civilizational draw. “I do not know whether or not there is a God,” he wrote to me. “I am inclined to think so. Yet I think that atheism is an absolutely untenable philosophy for society even if it is the truth.”

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But as is often the case, his “I am inclined to think so” led him to “mere Christianity.” He had himself baptized as an Episcopalian, but I could sense he was heading Rome-ward. “I HAVE CATHOLIC QUESTIONS,” he texted me in 2018. Dovie, I think, was one of those people for whom the Catholic Church is its own proof: the sheer fact of an institution that has persisted for two millennia, teaching the same thing — not least when it comes to the value of life, all life.

When he was ready to be received in the Church, I served as his confirmation sponsor at a Mass celebrated in Latin at a church in Brooklyn on April 17, 2022 — Easter.

As the years wore on, it was hard to avoid the impression that his condition was worsening. When we’d go out to dinner, he could only manage soup, having once relished grilled chicken. Later, just the bourbon. Eventually, not even that. Then, in late May 2025, days after his UnHerd essay appeared and was adapted into a New York Post column, he had an apparent mishap with his breathing device. I visited him at the Brooklyn hospital where he was initially treated, said several decades of the Rosary, held his hands. 

Early on, there were little signs of movement under the eyelids, but these apparently proved illusory. Dovie stayed in a coma, lovingly cared for by his family at multiple facilities, for more than a year. My final text to him — “Hey, dude, still basking in the afterglow of publication?” — went unanswered. Then again, at his confirmation Mass, the words of the Introit reassured both of us: Resurréxi, et adhuc tecum sum, alleluia. 

They didn’t diagnose it in A&E though. That happened in the follow-up appointment. I often dwell on that afternoon, in the run-down wing of a hospital in Haywards Heath, replaying the transition from the innocence of the drab waiting room to the gut-punch that was delivered behind the doctor’s door: “Mr. Burley, you have Parkinson’s disease.” My life divides now between before and after Haywards Heath.

My first instinct was to keep it secret, and I did — for a year. Many with Parkinson’s do the same. The urge to hide it is widespread among those who have it. Almost 23% report concealing their diagnosis from family; 85% report feeling embarrassed by their condition, and 57% avoid or cancel social situations. Sufferers are scared — rightly or wrongly — of being written off, patronised or defined by the illness. Even more deeply: the less visible it is, the further away seems the endgame. Parkinson’s is a progressive, degenerative disease. It will get worse.

So you can’t hide it for long. It doesn’t help that the medication often has side effects as wild as the symptoms themselves: daytime sleeping, involuntary muscle movements, impulse control disorders and vivid hallucinations. Any of this will grass you up pretty quickly. Realizing this, I began to be open about it. But as far as I was aware, it was still invisible to the outside world. Over the years, I have done plenty of public events and on-camera appearances, and nobody has said a word about the way I move or hold myself steady. It’s only now I realize how important this has been: it feels OK for people to know I have Parkinson’s, provided they can’t see it.

I didn’t feel like a victim, never saw myself as disabled, nor felt any embarrassment because I looked “normal”. Until last week, that is, when, for the first time, I felt the sting of the pointed finger and accompanying laughter directed at someone weird, different, or disabled.

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Camilla Tominey’s Sunday morning political show on GB News starts mercifully late, but for the insomniac wing of the Parkinson’s massive, you’re always running on empty. I’d managed only three hours the night before. The heat didn’t help, but interrupted or occasionally non-existent sleep has been a permanent feature of my life, whatever the weather, since the diagnosis. I have learned to live with it.

Given my insomnia and unpredictable symptoms, why had I agreed to a live TV appearance? This is a side of Parkinson’s that you don’t hear about very often. For me, particularly over the last year or so, the corrupted file on my internal hard drive has rewired me. I am more driven, more creative, and more willing to take risks.

This isn’t unusual: 20% of those with PD report a surge in creativity and the drive to achieve more. There are countless stories of people who, without any prior interest in the arts, discover a new, often intense, obsession with poetry or opera, sculpture or pottery. These effects are created by a powerful combination of the psychology of time being short, the condition itself, and medication, which can be “disinhibiting”.

So, there I was, shattered but confident in the studio next to Camilla, looking forward to countering the increasingly hysterical press coverage of the small boats “crisis”. My Parkinson’s didn’t cross my mind; I was focused on providing some engaging and challenging content. I love the energy of live TV and before I knew it, it was all over, and all was well.

On the train home, I opened X, expecting some pushback. Obviously, many GB News viewers would disagree with my plea for some perspective on migrants. So it was no surprise to read that they thought I was “obnoxious”, “awful”, and “dreadful” — in a way, that’s what I was there for.

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However, a new theme started to emerge among the messages, complaining that I couldn’t “keep still”, and thought I was “hard to watch”, and “very odd”. One concluded I must be “pissed/hungover/on something”. Another asked, “Who is this pisshead on GB News?” “Is he on drugs?” Yes, I was, one decided “(He’s) clearly coming down from a kilo of Charlie.”

I was confused. Had I been slurring my words or swaying in my seat like a drunk? Or was it simply that I was irritatingly deviating from Reform UK’s talking points? I needed to check. So, I took the painful step of rewatching the newspaper review. The truth was sobering: true, there was some gross exaggeration by a certain unpleasant cohort; but they had a point. There was a hesitation in my voice, and I did sway in my seat. It was briefly upsetting to be so cruelly sent up, but I appreciated the brutal economy of one two-word takedown: “Twitchy Twat.” Take a bow, whoever wrote that, and while you are at it, rot in hell.

So it wasn’t the piss-taking that bothered me, so much as the stark realization that, after that appearance, I’m no longer an invisible Parkinson’s patient. My TV appearance marked an unwelcome milestone on the road to a frightening future.

A long time ago, at the beginning of what you might call my Parkinson’s journey (Destination: the grave), I arrived at my first PD exercise class determined to break the habits of a lifetime, become a good joiner, and embrace my group of fellow sufferers. My resolve deserted me the moment I put my head around the door and saw how these people moved, how ill they seemed, and how old they were. Afterwards, I couldn’t get out fast enough, and I’ve been running ever since. But I now know that one day I’ll have to stop running and take my place in the group.

Unless, that is, the elusive breakthrough comes and we work out how to slow or cure the disease. You never know; Parkinson’s is, above all else, an unpredictable fucker.

New York’s proposed Medical Aid in Dying Act threatens to undo this presumption in favor of lifesaving, especially for people with disabilities such as me. This month, the bill passed in a vote of 81 to 67 in the Assembly, the lower chamber of the state legislature. It is now on its way to a vote in the state Senate.

If the Empire State joins the 10 states (and the nation’s capital) that have made assisted suicide legal, it will be adding killing to the options available in doctors’ toolkits. Given my own brushes with death over my 34 years — and those moments of staring into the suicidal abyss as a result of depression associated with my condition — I pray Empire State lawmakers take a step back, and rethink.

This isn’t, and shouldn’t be, a partisan issue. Just last year, John Carney, then the Democratic governor of Delaware, vetoed a similar bill that had passed the state’s General Assembly. In 2012, when Massachusetts voters re-elected President Barack Obama by a whopping 23 points, they also rejected a ballot measure to legalize physician-assisted suicide.

In Britain, former Labour leader Jeremy Corbyn bucked his party to vote against legalization, while former Prime Ministers David Cameron and Rishi Sunak broke with their fellow Tories to support it. Republicans may be more against legalization than Democrats, but Democrats’ long tradition of protecting the vulnerable should militate against Empire State lawmakers passing this bill.

The bill, a mere 12 pages long, is deceptively enticing. At face value, it requires two doctors to sign off on a request for lethal drugs by a patient of sound mind with six months or fewer to live, with a diagnosed terminal illness. The bill proposes, without using such language, to offer those wracked by painful, terminal illness “death with dignity” on their own terms.

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Death with dignity is a real thing — many ancient cultures speak of it. In the Jewish religion in which I was raised, a good death is considered a kiss from God. Dying well is likewise an art in the Catholic faith I adopted as an adult. But a good, dignified death cannot come at the hands of doctors helping patients dispatch themselves. It cannot serve the cause of health insurers trying to save a buck. Still, any opponent of the legalization of physician-assisted suicide has to grapple with the fact that the demand for it is there for a reason.

I was born with a recessive genetic neuromuscular condition called nemaline myopathy. Over the years, it’s developed to the relatively stable point where I use a portable ventilator to breathe — hence, my blacking out last September — and a motorized wheelchair to get around. I often require assistance with basic tasks. I’m not terminal — at least, not without taking into account that life itself is terminal, for all of us. But many times, my own body can feel like a straitjacket, and that’s without the physical pain that surges from time to time.

I don’t want to die, and God willing, I’ve got another couple of decades left, at the very least. Under the law as proposed, I wouldn’t be eligible, all things being equal. But all things aren’t always equal. Eighteen years ago, bedridden for a month after major back surgery, I wished more morphine than was necessary for pain relief had been available to me. Watching my late grandfather wasting away in his last six years in a hospital bed at around the same time, I could and still can empathize with those who favor medical aid in dying.

For others, such existential moments can tip into a yearning not to exist — to escape it all.

Which is, of course, the point. If no one wanted physician-assisted suicide, there’d be no reason to make or keep it illegal. But there is such demand. Yet New York would go down a very dark moral path by enabling doctors to accede to such requests, even — as of now — in the extremely limited circumstances of terminally ill patients with six months or fewer to live.

The way the bill is drafted is itself prone to abuse, lacking the necessary safeguards to prevent nonconsensual physician-assisted suicide. A lot has been made of abuses in other countries, such as Canada and the Benelux region, where the category of people approved for suicide-by-doctor has steadily expanded to include the mentally ill, those with autism and ADHD, even teenagers.

The problem is that no safeguards could possibly be adequate. Even with the most tightly drafted laws, patients and people with disabilities are likely to face subtle forms of coercion (“The treatment would be difficult and costly for your family; there is, of course, another option…”). Equally troubling is the way in which legalized euthanasia and assisted suicide twist and distort the medical profession’s oldest commitment, turning physicians into angels of death.

True, the principle of primum non nocere (“first, do no harm”), to which doctors are bound, has on occasion been reinterpreted such that “harm” is taken to include permitting a patient to suffer. At times, we allow medical care or nutrition to be withdrawn, despite the certainty of death. But the trouble is that allowing doctors to help their patients kill themselves means that killing now becomes a legitimate medical option.

My situation as someone with serious physical disabilities may be unusual. But most everyone has dealt with the byzantine bureaucracy of insurance companies and medical billing. Do we really want to make physician-assisted suicide a legitimate form of “treatment” in end-of-life cases? We bemoan the fact that people nowadays have fewer friends, or even close family members. Do we really want to make it so that there’s an “out” to the natural burdens of familial love? Or to mere loneliness?

I’m lucky to have a family and friends who love me. But others aren’t so fortunate, and even my family, by the natural way things go with time, won’t always be around. In medical dramas like Grey’s Anatomy or The Pitt, the medical profession is portrayed as valiant teams of heroes coordinating to save lives — and, don’t get me wrong, plenty of doctors, nurses, phlebotomists, and radiologists are heroic. But reality is far more chaotic and disorganized.

If not for my constant vigilance at my recent stint in the emergency room last year — the price of which was not sleeping for nearly the entire two days I was under observation — I’d have been administered several painful antibiotics I didn’t need, received precious little nutrition, and ended up with a tracheostomy in my windpipe. And that’s with doctors having no right to kill any patient. Let them do that — legally? You can bet death will become an easy option.

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Advocates of physician-assisted, when not resorting to subterfuge, insist that the terminally ill who want to live out their remaining days should be able to do so. So what differentiates them from those who advocates say should be allowed to die? Pain, physical or spiritual. And don’t we all suffer pain? Aren’t we all terminal? Six minutes, six days, six weeks, six months, six years, six decades — one day, the curse of Adam will catch up with us all. I’ve lost friends to tragedies who I thought would live 100 years.

Simply put, we don’t know when our time is. If that’s the case, then the logic of assisted suicide leads inevitably to the conclusion that those with doctor-approved expiration dates are living lives not worth living. Lives unworthy of life, as the Nazis referred to people with disabilities when they set out to exterminate us with their Aktion T4 program.

A life not worthy of living. Well, I’ve heard that before. From peers, from rivals, sometimes from myself. I haven’t been suicidal in a good number of years, but I can’t say that about my teens and early 20s. I’ve had my fair share of heartbreak and physical pain that might have crushed many. Yes, no one wants to end up like Tithonus, locked away to wilt and fade while still breathing. But neither should the state of New York give reason for loved ones to abandon the frail. I’m one of the lucky ones. I fear for a world in which life is cheap.

It’s notable that some New York lawmakers are trying to push the bill in the wake of the death of Pope Francis. The late pontiff was especially vociferous in decrying what he labeled “throwaway culture,” a culture of waste that most afflicts “children, the elderly, the needy, and the disadvantaged.” Euthanasia epitomized that throwaway culture for Francis, and should New York enact the Medical Aid in Dying Act, the trend would only intensify.

The New York Senate must vote down this charter of death. Failing that, it would be an act of supreme political courage for Gov. Kathy Hochul to veto it. As a young man with disabilities — albeit ones that, with assistance, would still allow me to live a full and familial life — I fear what this state should become if the suicide-by-doctor becomes law. All New Yorkers are imperiled when the lives of the most vulnerable are rendered cheap.

The system is broken, according to our Work and Pensions minister, because of the vast numbers of long-term ill claiming welfare payments. Her quick fix to the deep-rooted problem of chronic illness, disability, and NHS waiting lists longer than all three volumes of Das Kapital, is a gentle shove down your wheelchair ramp, into the nearest zero-hours contract. It’s unoriginal, impersonal, schizophrenic policy. But for Kendall, it’s the greatest shake-up of the benefits system in a decade.

Rather than helping the sick and the mentally unwell into work — by, say, guaranteeing access to quality healthcare, or supporting people with those disabilities to find suitable and sustainable employment — Kendall will simply change the definitions of what it means to be sick and mentally unwell. Under her plans, the “Limited Capability for Work or Work-Related Activity” category will be scrapped, meaning thousands of people currently deemed too ill to work will soon find themselves employable by government decree. Never mind the fact that the health system is in crisis, and many can’t access the care they need to get better. Never mind the reality that employers aren’t exactly queuing up to hire workers with complex health conditions. Labour has decided that, rather than fixing these systemic problems, the real issue is that not enough sick people are dragging themselves to Jobcentres for mandatory CV workshops.

It’s hard to decide what’s more ridiculous: the idea that forcing the sick into job searches will somehow heal them, or the sheer bureaucratic madness of trying to implement this policy through the already broken DWP. If the DWP were a person, it would be convicted of manslaughter, signed off indefinitely, and committed to a mental institution for life — before declaring itself fit to work on its own deathbed. This is a department that can’t answer its own phones, subjects legitimate claimants to months of appeals processes, and, in one notable case, flagged over 200,000 people for potential fraud investigations — wrongly. Now they’re about to be trusted to decide whether someone with severe chronic pain or debilitating mental illness is fit to stack shelves for $10 an hour? What could possibly go wrong?

There was a time when the only tools this Stanford experiment had at its disposal to force compliance consisted mainly of sternly worded computer-generated letters and a telephone help-line with a two-hour queue. To Vivaldi. Well, now the DWP means business — and it’s going to feel extremely personal. Of course welfare should be reserved for those who need it, and genuine fraud must be stamped out and deterred. But I question the wisdom and character of anyone who thinks disability benefit is the area of welfare most in need of an aggressive audit. Invariably, the populations government targets with these cost-saving reforms are those who lack the means or the will to fight back — plus they’re easier to harass than wealthy tax dodgers.

According to the DWP, fraud and error cost the taxpayer $9.7 billion last year, with $7.4 billion classified as outright fraud. It’s an interesting term, fraud. It implies that every last penny of those billions has been deliberately scammed. But mistakes are inevitable in an overly complex, inflexible system which bamboozles even university-educated claimants who inadvertently get a detail here or there wrong. Compare that with the $23 billion in benefits that go unclaimed every year, and the story looks very different. This move isn’t just about clawing back public money and cutting the welfare bill; it’s about taking an aggressive posture. A posture designed to appease those whose overriding response to decades of economic mismanagement and stagnation is to demand that the poorest and least fortunate are held responsible. Labour is far less interested in ensuring people get the help they’re entitled to than it is in stoking a moral panic about fraudsters bleeding the system dry.

So, not content with trousering your granny’s heating allowance and psychologically waterboarding the legitimately sick and disabled, Labour is now aiming to turn the DWP into a pound-shop paramilitary force. Sweeping new reforms will give officers the power to enter and search homes, seize property and driving licenses, and snoop through bank accounts if they suspect benefit fraud. I wonder how critics of the nanny state — who believe any government intervention sits on a spectrum of tyranny, but who also seem to care little about what happens to those on the margins — will be able to reconcile these conflicting ideas.

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Barely a month ago, the entire nation stopped for a whole week to debate the complex ethical dilemmas of assisted dying, the risk of abuse, and of people slipping through the net due to institutional dysfunction and perverse incentives. But these DWP reforms are bound to pass without so much as a whimper from the media, and even less interest from the public.

The official line is that these powers are about clamping down on organized crime gangs who exploit the benefits system. The reality? It’ll be the usual suspects who suffer — disabled people, single mothers, and those working precarious, underpaid jobs. Much like Kendall’s proposals to scrap the Work Capability Assessment and tighten the screws on mental health claimants, this is just another distraction from Labour’s inability to solve the real problems underpinning welfare dependency.

Labour is pitching all of this as necessary, pragmatic governance, but in reality, the same party that once talked about dignity in welfare is now trying to outflank the Tories from the Right. Hell, even Nigel Farage has softened his tone on welfare, aware his growing electoral coalition now includes, you guessed it, the sick, the disabled, and people on in-work benefits. But Labour, unlike Farage, lacks the conviction to make anything it says sound convincing.

None of this is to say that there aren’t problems with how incentives to work are structured, or that the system isn’t open to abuse. Every system is — just ask the many companies and high-net-worth individuals who shuffle money offshore to avoid paying tax. The difference is that we don’t see the same level of state aggression directed towards them. There are no dawn raids on corporate offices or intrusive, humiliating checks on the affluent who have creative accountants.

Yet, like a low-rent FBI, the department that can’t even answer its phones will have the power to raid homes, crawl over your bank statements and tell you if you’re sick or not. Presumably there are no waiting lists for this service. Well we can’t say we weren’t told. After all, a different Labour leader warned us years ago that we shouldn’t get sick.

The first is that, last year, I was in a catastrophic rock-climbing accident in which I broke my neck. The result is that I am now tetraplegic, one of the most severe disabilities it is possible to acquire. Some highlights include having no sensation, or motor control, from around my nipples down. That doesn’t just mean I will have to use a wheelchair for the rest of my life; it also means I am doubly incontinent. Instead of peeing out of my penis into a toilet, my urine drains directly out of my guts into a plastic bag strapped to my leg. Not only am I liable to shit myself without warning; I have no control over when I do or don’t go. This means every morning I am treated to the delights of “manual evacuation”, where a trained care worker sticks suppositories up my arse, before fingering me until I defecate. While still in bed.

I need them to do this because tetraplegia means that I have lost around 95% of the use of my hands. Just like I also need somebody to wash me, dress me, and cook for me — none of which I can do for myself anymore. (I am writing this using voice dictation software.) On top of that, my broken neck means I am at risk of a unique medical condition called autonomic dysreflexia, which basically means that my body is liable to begin a deadly feedback loop, which if untreated culminates in agonising pain, strokes and death. For these reasons, I now require 24-hour care. In fact, this list only scratches the surface — but you get the idea. It is not exactly how I planned to spend my 30s.

The second thing you need to know about me is that I was born and raised in Southport. Both my parents still live there, in the house where I grew up. Many of my friends also still live there, though thankfully none of their families were victims in last week’s horrendous events.

These two things ought to have nothing in common with each other. And until last Monday, they didn’t. What changed this was finding out that the far-Right activists who have been causing havoc across the UK for the past week were planning to bring their “protests” close to my home. And not just my original home of Southport, which they’d already desecrated on the ludicrous pretext of “avenging” the awful stabbings that took place there. But my current home of Walthamstow, in London. And incredibly, not just my borough — but literally my street, urging their followers to “mask up” at 8pm on Wednesday outside the Waltham Forest Immigration Bureau, which I can practically see from my bedroom window.

Now, this generates some quite serious practical safety problems. Not for me personally, because I can just sit safely inside my flat, away from the idiots. The problem is for my care team. By and large, the person who looks after me in the day swaps over with somebody else at 8pm. Then at 9pm, a second person arrives to assist with the rigmarole of putting me to bed. Thus, three people are faced with the prospect of negotiating an EDL “protest” that may well have turned into a race riot. This would be bad enough, but gets considerably worse when you factor in that one of them is Nigerian, and two of them are Pakistani.

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In a way, this is just a practical problem. As it will not be safe for them to be on the street outside my flat given the kinds of people who are going to be around, we need to work out some different arrangements in terms of who comes and goes, and at what times. To some extent, this is just a logistical pain. Much worse than that is the shame I feel in having to look them in the eye and discuss the fact that white English people (like me) are threatening to have a riot on the street outside, because of a hatred for people like them.

Let’s unpack that.

On the one hand, my carers turn up every day to do things like wipe my arse, drain my piss, wash my genitals, dress me, feed me, put me back to bed for scrubbing when I’ve shit myself, and so on. On top of that, they also have to deal with me. The truth is I would be lying if I said I had come to terms with how I must live now. I am riddled with depression and anxiety, and while most days I manage to keep a lid on it, some days I just don’t. I live in a permanent state of frustration, which means I’m often just rude (which I then hate myself for). At my worst, I have near-psychotic breakdowns. Like last week, when I started hitting myself in the head as hard as I could and begging the staff to kill me, promising to give them the contents of my ISA in exchange. In other words, caring for me is no picnic.

And yet I’ve never once heard them complain, or get frustrated with me, or show me anything other than patience and kindness. And it is not like they are doing this for great monetary reward. They are employed not by the NHS, but by a private care agency that gets its funding through the NHS. I don’t know exactly what that means in terms of staff wages, mostly because I’m too embarrassed to ask. But we all know it’s not going to be the stuff of envy.

Nor is it some strange coincidence that my care staff are immigrants from much poorer countries. This is just the norm, as I’ve come to learn over the past year. When it comes to basic care work — i.e. the stuff that nurses are too qualified to sensibly be assigned to do, but which absolutely needs to be done to stop people dying, to keep them clean, to ensure they eat, and so on — the fact is that English people just won’t do it in anything like sufficient numbers to meet the demands of the indigenous population. The only people willing to do this shit work, for crap pay, are those who come from countries so poor, with economic prospects so bad, that moving to the UK seems worth it. And now that they are here, the self-appointed “defenders” of England tell them that they are not wanted, and threaten them with violence.

After my accident, I spent the first eight months in different hospitals. As an estimate, I would say that 85% of the people involved in my care — from top surgeons all the way through to cleaners and kitchen staff — were non-white. To some extent, this was skewed by the fact that I spent most of my time in London. And quite a few of those people were second or third-generation immigrants (although that is offset by the fact that a lot of the white staff were Eastern Europeans). For four months after that, I had to live in a residential nursing home while independent living arrangements could be secured for me. One of the care staff there was referred to as “the English girl”. Because she was, literally, the only one.

So, when I hear “patriots” bemoaning immigration, while claiming to love the NHS, I roll my eyes. Perhaps they could try breaking their necks, and seeing what I’ve seen. I think they might change their minds. It is not just the NHS that would collapse if the EDL got its way; the entirety of social care in this country would disintegrate overnight.

In many ways, it is a strange irony that an explosion of racial tensions should emanate from my hometown, of all places. My memories of growing up there, nearly 20 years ago, are of it being basically an Anglo-Saxon ghetto. I think there was one black person in my high school. The only Asian was my mate Pricey. I remember hearing that there was a synagogue somewhere, but I didn’t meet a Jewish person until I went to university. Clearly, things must have changed to some extent: last week, I was genuinely surprised to learn that Southport even has a mosque. But still, of all the places in Britain where a second-generation Rwandan immigrant born in Cardiff might perpetrate an act of unspeakable horror, Southport would have seemed one of the most unlikely candidates, at least before tragedy struck. At any rate, trying to invoke Southport, of all places, as the emblem of anti-immigration sentiment, will be patently ridiculous to anybody who’s ever actually been there.

But those are facts, and as we know in this age of social media lies, encouraged by vile opportunists like Nigel Farage, the facts don’t matter anymore. So, forget about the facts, I want to say something different to the yobs planning to “protest” on my street this week. On behalf of Southport, on behalf of my carers, on behalf of myself, and on behalf of all decent Britons: will you please just fuck off?

After an altercation with a member of staff in the summer term, he didn’t return for the rest of the year. Instead, he spent much of the time with his dad, a labourer who picks up jobs on farms and building sites, doing what sounded like back-breaking work from the time he would normally get up for school until long after he would normally get home. He loved it — he likes getting on and doing things, and being useful rather than being treated, however sensitively, as a problem.

Kieran is one of many such problems. And as more than 100 schools threaten not to reopen this term, their plight looks set to be ignored once again. One in four English children are persistently absent from school; one in 50 are missing more than half. Among pupils in years 10 and 11, a third  are missing the equivalent of at least one GCSE’s worth of school.

Often, these cases are referred to mental health teams like the one I work in, which were set up to address common problems around behaviour, anxiety and low mood with brief self-help treatments. What happens in practice, however, is more complicated: schools, faced with scant resources, often end up referring children out of a need to be seen to be doing something, and low attendance often features.

Kieran, for example, had an Education, Health and Care plan (EHCP) — the highest level of support for special educational needs — for dyslexia and ADHD. His mum begged his teachers to let him sit certain classes out, so he could focus on a handful of core subjects rather than skip school entirely, but there wasn’t much they could do — in the name of inclusivity, the school is expected to provide a full curriculum for all children, including those with special educational needs and disabilities (SEND).

Kieran was, in effect, a victim of a doggedly one-size-fits-all approach which maintains that everything can be fixed with education. It started with Blair, who believed in sending half the population to university: his argument was that academically clever people went to university, so if everyone went to university, everyone would be academically clever. Britain’s next wave of reformers, Dominic Cummings and Michael Gove, held that a traditional knowledge-rich curriculum would impart more information and better life chances to English children. Pisa results indicate that it probably has, but that average contains multitudes, and some of them aren’t coming into school. And it isn’t just the children with diagnosed special needs that suffer — it can be a pretty bleak experience for those who simply aren’t academic, too.

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Ella is 13 and softly spoken. She is in Year 8 and missed a lot of school last year. She gets headaches which were probably caused by anxiety — it is very common, especially in children and adolescents, for anxiety to manifest somatically in the form of physical aches and pains or nausea. If you ask Ella how things are going, she will reliably say that she is ok, home is great and school is tricky. She isn’t being bullied, and she’s too well-behaved to get into trouble — she just gets stressed out by school. Ella is in the bottom set for everything, and while the groups are smaller and the teachers do their best to make the work make sense, she knows she isn’t doing well at it.

Ella loved being at home in lockdown. She liked being able to do schoolwork in her own time, because it takes her longer to work things out than others. She liked being able to hang out with her cousins, and help out on her family’s farm. Like Kieran, Ella has a strong sense of her values and what she wants to do with her life. School is barely relevant to it.

A team like mine could work on some of Ella’s worries; helping to build up her confidence. But what you can’t cure therapeutically is the empirically observable knowledge that you’re stuck doing something you are bad at. If the core of your anxiety is a belief that you’re not good enough, there’s nothing more effective at feeding that belief than not being good enough at the only thing you have the opportunity to do for most of your waking existence.

In an under-resourced system optimised for academic exam performance, pastoral teams can do their best to find out about the interests and motivations of non-academic children, but they can’t rewire the curriculum. In response, activist groups, such as Not Fine In School which represents families of mostly neurodiverse children who are out of school, argue that the current model, far from being inclusive, is failing many children. They advocate for a less punitive approach to pupil absence — at present, local authorities can fine parents over children’s low attendance — and more rights for parents in determining the best educational provision for their children.

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The preference of many children is to be able to self-direct with one-to-one attention when they need it. The obvious place to do this would be at home; but unlike the US, where a strong culture of home-schooling is has resulted in better outcomes than those of state-educated children, the Department for Education collects no outcome data for home-schooling families and the education establishment is, at best, sceptical. Moreover, there is very little support for families where both parents are working. Some US states, by contrast, help fund home-schooling with tax credits or deductions.

Instead, the axiomatic assumption in Britain is that school is best, and any misalignment with the school system is an individual pathology. We defer to the language of “anxiety”, which has become a catch-all term for all distress caused by an aversive experience. But this can be unhelpful for a number of reasons, especially where school avoidance is a feature: it can pathologise ordinary difficulties, undermining children’s self-confidence and self-efficacy; it can mistake the distress that many autistic children experience in the school environment for something that can be straightforwardly treated with exposure; it also assumes that the individual, rather than the environment, is the problem. 

We could, for instance, describe the frustration of being stuck in a lesson you are unable to participate in as anxiety, and we could do the same with the sensory discomfort of the classroom, but those aren’t irrational fears and they can’t be fixed in the same way irrational fears can. And even when those children are coping with the demands of being in the school environment, they tend to emerge with little to show for it. Pupils with an ECHP are working on average three years behind their peers by the time they leave school; only 13% of children with special educational needs leave with GCSE passes in English and Maths.

One way of looking at this is to see children who are statistically less likely to do well at school as voting with their feet and staying away. The education establishment would argue that this is precisely why it’s so important for them to be in school — to “close the gap” in their attainment compared to other children. But I am not convinced. In The Cult of Smart, the Left-wing writer and ex-teacher Freddie DeBoer argues that academic ability is largely heritable and that the increasing amount of pressure and money spent on trying to close achievement gaps have little impact. We justify wildly disparate outcomes in wealth and well-being as being merit-based — if you work hard in school, you deserve better in life — when the outcomes are determined more by luck than hard work.

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DeBoer’s solutions include ditching the assumption, beloved of cognitively blessed elites, that academic attainment signifies moral goodness, and allowing children to opt out of the academic curriculum at age 12. David Goodhart makes similar arguments for the UK in Head Hand Heart, arguing that a cognitively minded ruling class has failed to take skilled manual labour and caring professions seriously. What do we signal about the work we value as a society when we tell children that the only things worth learning in their formative years involve memorising and decoding information?

In the current system, we pretend that everyone can jump through hoops of academic cleverness, which are the only hoops worth jumping through. When that doesn’t work, we pathologise the individual and blame the teachers, who should be able to skilfully engage all children in the class, no matter how large their spread of aptitude and interest for the subject.

Kieran and Ella have been having a miserable time in an environment ill-suited to their needs — it was that, rather than any irrational error of thought, that dented their attendance. The only thing they were taught was that they had failed.

Certainly, this norm was well-established by the following year. In October 2016, the Washington Post published an article mocking Donald Trump’s weight and asking a panel of “experts” to guess how fat he was. “Even more important than Donald Trump’s weight is how unhealthy he looks,” said cardiologist Dean Ornish. “Unhealthy complexion, puffy, pasty skin, sweating a lot.”

This type of coverage certainly violates the spirit if not the letter of medical ethics, which discourages doctors from performing armchair diagnoses of people they don’t treat. But the Left’s defence was that it was part of a vital truth-telling exercise. The press should have an adversarial relationship with those who seek the privilege of governing us! They should ask tough, even invasive, questions about a candidate’s fitness for office! The health of our aspiring leaders is a matter of public concern, after all, especially when it comes to retaining the necessary faculties to do the job. But especially, and more importantly, when the aspiring leader is that guy. And so, the resistance media was born, and went on to thrive during Trump’s presidency.

At the root of all this was a conviction that it was the job of the press to, as Arianna Huffington put it in 2015, “never [fail] to remind our audience who Trump is and what his campaign really represents” — but this was about more than Trump. He was only the catalyst for a long-overdue transformation of journalistic norms. Telling the public what is true, objectively, became somewhat less important than telling them what is right, morally. And what has since become clear is that this concept of rightness is not just morality-infused but highly partisan — which brings us to last week’s controversial interview between NBC journalist Dasha Burns and Pennsylvania Senate hopeful John Fetterman.

Fetterman is nearly seven feet tall with prominent tattoos, a shaved head, and a penchant for wearing shorts and hoodies rather than three-piece suits. He has become something of a star for Democrats trying to combat their image as smug coastal elites in couture clothing who’ve fallen out of touch with the working class (even though, despite his grungy aesthetic, Fetterman actually holds a PhD). He was also, until recently, well-positioned to win in the upcoming midterm elections against his Republican opponent, Dr Mehmet Oz, a Trump-endorsed candidate who was previously best known for hawking pseudoscientific cures on Oprah.

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Unfortunately, Fetterman suffered a relatively serious stroke in May — and while he was back on the campaign trail two months later, he and his team remained somewhat tight-lipped about his health. Videos surfaced of Fetterman seemingly stumbling over his words during public speaking engagements, giving ammunition to Right-wing claims that he was no longer up to the challenges of holding office. Fetterman’s campaign said the videos were misleading; the truth, as usual, appears to be somewhere in the middle.

The NBC interview was his first on-camera since the stroke. Introducing it, Burns told NBC anchor Lester Holt that Fetterman continues to have auditory processing difficulties for which he uses technological assistance, which Fetterman himself explains in the interview: “I sometimes will hear things in a way that’s not perfectly clear, so I use captioning, so I’m able to see what you’re saying.”

The trouble began when Burns told Holt that without the captioning, Fetterman had struggled to communicate: “In small talk before my interview, it wasn’t clear he understood what I was saying,” she said. She clarified these remarks the next day on the Today show, noting that auditory processing issues are not the same as cognitive damage; Fetterman’s problems are specifically listening-related (the signal gets garbled somewhere between ear and brain), can be mitigated, and may also improve over time.

By the standards of 2016 — or indeed, of journalism in general — it was completely appropriate of Burns not to shy away from discussing this issue. Reporters have a solemn duty to tell the honest truth about a candidate’s limitations, whether or not they find that candidate repulsive.

In this case, the NBC appearance was arguably to the candidate’s benefit. The interview, along with the background provided by Burns, makes the extent of his current limitations clear in a way that voters might find reassuring. In contrast to the viral videos, which seemed like serious cause for concern, he came across here as being in relatively good shape.

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But rather than being lauded for her brave and honest reporting, Dasha Burns became the resistance media’s sworn enemy of the week. Podcaster Kara Swisher tweeted a scathing criticism of Burns to her million-plus followers, writing: “Sorry to say but I talked to @JohnFetterman for over an hour without stop or any aides and this is just nonsense. Maybe this reporter is just bad at small talk.” The women of The View also jumped on the “Dasha Burns is bad at small talk” train, with Sunny Hostin also claiming that she “broke journalistic ethics”. Buzzfeed condemned Burns for ableism and included quotes from a disability activist who said the interview would “worsen attitudes and violence towards disabled people in a time when virtual accommodations are being removed left and right after they were implemented overnight in 2020”. And Fetterman’s wife, Gisele, said she couldn’t believe Burns had been allowed to describe the candidate’s communication difficulties without “consequences”; she demanded them a few days later: “I would love to see an apology towards the disability community from her and from her network for the damage they have caused,” she said.

The word “damage” is interesting, in that it seems like a rare, open acknowledgement of the deference politicians on the Left have come to expect from the press. (The Burns interview triggered nearly as much outrage as a far more scandalous remark from Oz’s communications adviser Rachel Tripp, who mocked Fetterman’s struggles, saying that if he “had ever eaten a vegetable in his life, then maybe he wouldn’t have had a major stroke and wouldn’t be in the position of having to lie about it constantly”.) Fetterman was, of course, not personally harmed by the observation that he still struggles to interpret speech. His chances of election, on the other hand… well.

But this is what happens when journalists begin to see themselves not as mere reporters, but arbiters of moral truth, with a responsibility not just to inform the public but to guide them to the proper conclusions. And the new norms, and new normal, ushered in during the Trump presidency have lingered long after the conclusion of his time in the White House, to the detriment of basically every election since.

The problem isn’t a press that challenges power, which is of course what the press should always do. The problem is that it challenges inconsistently, and only in one direction. The same folks who spent all of 2016 chortling about how Trump was too fat and crazy and congenitally stupid to be elected president are now, in 2022, calling for sanctions on any journalist who raises salient questions about Fetterman’s fitness for office — and relatedly, studiously ignoring some fairly newsworthy senior moments on the part of President Biden.

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That call for moral clarity, which sounded so elevated in theory, becomes something far baser in practice: a facile narrative about heroes and villains that invariably breaks along party lines. We see this not just in the expectation that Fetterman be protected, but in the treatment of his opponent, who has been roundly mocked as an elite Trumpian carpetbagger who can’t even pronounce the name of the local grocery store. Oh, the irony of Oz being condemned for his “Wegners” stumble by the same people who consider it a cardinal sin to even mention the other candidate’s difficulties with verbal communication.

One need not be a Republican to understand why this stuff makes ordinary people feel like they’ve stepped through the looking glass. Or to observe that the media establishment that now frets over the scourge of “big lie” conspiracies is the same one that spent years salivating over the end (it was going to happen, any day now!) of Trump’s obviously stolen presidency. Or to wonder why Stacey Abrams’s refusal to concede the legitimacy of her election loss in 2018 is courageous and inspirational, while Trump’s represents an unprecedented fascist threat. And yet the expectation is that good liberals will not notice the lopsidedness of this narrative — or if they do, that they will never mention it — because to do so would be to express “a Right-wing talking point”. Everything, even the truth, is now filtered through the lens of tribal politics.

Obviously, this makes for especially high drama when a presidency is on the line; obviously, it is especially bad and shocking when the norm-flouter is also the most powerful man in the nation. But it’s the trickling-down of this phenomenon to state and local elections, a reshaping across the board of both politics and the way the press covers them, that genuinely imperils democracy. Elections, once understood as a race, are being increasingly treated like an endless war — one that goes beyond politics as spectator sport, into a world of divergent realities. A world where the loser might capitulate to a corrupt system but never concede defeat. A world where the polarised press no longer even pretends to care about truth, but instead acts like a sort of hype team for its respective party.

And on that front, the upcoming midterms seem poised to be a watershed moment — one in which we either collectively move on from Trump’s America, or decide to live in it, forever.

“He was pinned to the grass face down, with his arms behind his back, by a young male teacher wearing blue latex gloves while a small group of other staff looked on,” she tells me. “Olly later said that he’d been carried through the school by four staff, one to each limb and thrown.”

Olly, who has Down’s syndrome, was fortunate enough to be able to move to a school more sensitive to his needs. But his disturbing treatment remains a frequent occurrence in educational institutions across the United Kingdom — and it is overwhelmingly disabled children who are being left both mentally and physically scarred by it.

Previously, the abuse of children in schools was thought to be a disturbing product of a bygone era; something that took place in Victorian Britain rather than the 21^st century. That is, of course, partly due to the shameful lack of media interest in this area. Indeed, it’s rather telling that in the past year, the only time it has been significantly covered in the national press was last month, when Paris Hilton spoke out about her own experience of restraint and seclusion in a Utah boarding school for so-called “troubled teens”. She tells me: “That small room, covered in scratch marks and smeared blood, with no bathroom, is one of the most vivid and traumatising memories I’ve ever experienced in my entire life.”

It was a grim, honest account of abuse in school — and one shared by countless children here in Britain. Restraint forms part of a sanctioned group of so-called “restrictive practices” used in education, health and social care settings, as well as, unsurprisingly, in prisons. In the UK, these practices are regulated with a duty “to record and report” in all settings except education. Methods include physical restraint (with a number of different holds taught), mechanical restraint (such as being tied to a chair), chemical restraint (using drugs) and the use of seclusion, with children being sent to rooms or even tents and confined within them.

Add to this the emerging practice of imposing “blanket restrictions”, whereby children are not allowed to walk, run or play with their peers, or must visit the toilet at a set time (which is often not appropriate for some disabled children), and it’s no wonder that so many parents of disabled children are terrified for their well-being.

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For most parents, the zero-tolerance behaviour policies enforced in so many schools are to blame for this hidden crisis. As one campaigner, Beth Morrison, tells me: “We banned the belt in the eighties; now we are bringing physical punishment back for disabled kids by the back door.”

Beth’s son, Calum, who has epilepsy and support needs, was restrained on a number of occasions at a school in Dundee between 2010 and 2013. On one occasion, after he failed to follow a prescribed route when riding a bike designed for children with disabilities, he was restrained by four people and left with sixty bruises on his body. Dundee City Council say that they have fully engaged with police and prosecutors, and have taken on recommendations from the subsequent report. But Calum’s experience inspired Beth to set up the charity Positive and Active Behaviour Support Scotland (PABSS) in 2017, and has since collected more than 1,200 testimonies from families whose children — the youngest of whom was just aged two — have been restrained or secluded. In one recent case, a child who was held face down in the playground now needs a skin graft.

Yet when Morrison attends school meetings at the request of anxious parents, she says it’s a common refrain for senior teachers to dismiss their concerns by saying: “We have no records, so you have no evidence.” Indeed, a recent survey by the Children’s and Young People’s Commissioner for Scotland revealed that one third of Scotland’s local authorities did not expect schools to keep a record. (The shocking findings have since forced the Scottish government to agree to produce guidance on the use and monitoring of restraint and seclusion.)

The Northern Ireland assembly is also starting to wake up to the trauma and injuries endured by disabled children every day. Last month, Deirdre Shakespeare gave harrowing testimony about the experience of her son, Harry, now nine, to the assembly’s education committee. She tells me that Harry, then aged five, had been happy and placid. But after attending a “special school”, he started to have panic attacks and night terrors, and cowered in fear whenever his parents approached him.

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The family later discovered that he had been strapped to a chair for different activities, including learning, feeding and playing, even though he has no mobility issues. Colin McMenamin, from KRW, a leading Irish human rights law practice, said: “We have issued proceedings on this important matter and are seeking judicial oversight on what remains a very sensitive issue.”

When I approached Education Authority Northern Ireland for comment, a spokesperson said that the authority does not comment on “matters relating to individual children”. It is worth noting, though, that Morrison and Shakespeare told the Assembly that 22 Northern Irish families with disabled children aged between four and eleven had reported similar cases to PABSS, including physical injuries such as scratches, bruising and abrasions from being dragged. Moreover, the Northern Irish children’s commissioner, in a submission to the UN Committee Against Torture, has called for tougher laws, saying that schools should be required to report and record cases and that the law around when restraint can be used needs to be clarified.

The Welsh government is also currently consulting on guidance to better monitor restraint and seclusion across all age groups. In England, however, the Department for Education (DfE) is lagging behind, despite overwhelming evidence of harm in English schools.

In February last year, campaigners and advocates gathered at the House of Lords for the launch of the Reducing Restrictive Interventions and Safeguarding Children report. It included the testimony of one family whose child, referred to as Annie, was restrained 158 times in the space of eighteen months. “Many of these restraints spanned considerable time periods and involved multiple staff members,” it said. Annie “started self-harming and making suicidal threats” and “is now having trauma therapy”.

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On the same day, the Equality and Human Rights Commission (EHRC) announced that it would hold an inquiry into the practices in English and Welsh schools, and should report within the next few weeks. Yet campaigners and experts fear that nothing will change in England.

And if history provides a guide, they may well be correct. Even back in 2011, a review of restraint and seclusion in English and Welsh schools by Charlie Taylor, then the government’s behaviour advisor, looked at the recording and reporting of use of force. His conclusion? That schools should not be forced to record such incidents because it would add to “their bureaucratic burden”. Eight years later, the DfE eventually produced non-statutory guidance on the use of the practices for disabled young people — but only in specialist settings. It did not cover mainstream schools and did not require schools to inform parents, many of whom want their disabled child educated alongside their non-disabled peers.

So many are left looking, albeit with a hint of cynicism, to the DfE’s current behaviour tsar, Tom Bennett, who is set to launch a Behaviour Hubs programme, which he says will encourage schools to be “low tolerance” regarding behaviour, rather than zero tolerance. The DfE were approached for comment about parental concerns but did not respond. Bennett, however, has said that restraint is “incredibly rare in mainstream schools” and that the rules about restraint are adequate because it is rare and defends the use of “removal rooms and parking students separately from their classes…a common and useful part of many mainstream schools”.

James Betts, a solicitor at Irwin Mitchell, who acts for families representing a group of children who were restrained across the UK, disagrees. “Our most vulnerable children are being failed on account of the lack of adequate legal safeguards, and the families I act for believe that current restraint practices in the UK leave children with learning disabilities or autism at a very real risk of serious injury or even death,” he says. “Until robust action is taken, the children and families I act for will not rest. They deserve answers, accountability and real change to protect others in the future.”

More than two-thirds of the 5,776 deaths in their population of ten million were older people in care settings, the majority in residential homes. There are grim stories of the elderly being given morphine and left to die rather than overload hospital wards, along with more familiar claims of failure to supply protective equipment and underpaid agency staff working across different locations. An official investigation found the deaths concentrated in 40 of Sweden’s 290 municipalities, with 91 homes needing further investigation. “We failed to protect our elderly,” admitted Lena Hallengren, minister for health and social affairs. “That’s really serious and a failure for society as a whole. We have to learn from this.”

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The WHO has failed us again

By Ian Birrell

A similar tragedy unfolded in Britain. The big difference was that our leaders chucked 25,000 elderly people out of hospitals, sending them into care homes that were sometimes paid to take them in order to clear space in intensive care units. Incredibly, many of these patients were not tested for coronavirus, despite being sent into places packed with the elderly and disabled people most at risk from this disease. Ludicrous Government advice still claimed, until 10 days before lockdown: “It remains very unlikely that people receiving care in a care home or the community will become infected.

Official data revealed that almost 20,000 care home residents in Britain died with confirmed or suspected coronavirus during the peak 10 weeks of pandemic, although excess death figures suggests the real numbers may be even higher. “Years of inattention, funding cuts and delayed reforms have been compounded by the Government’s slow, inconsistent and, at times, negligent approach to giving the sector the support it needed during the pandemic,” commented the Public Accounts Committee two weeks ago in a devastating indictment of failure.

Britain has the second highest number of deaths as a percentage of its nursing home population in Europe. (There are currently about 400,000 people living in 17,000 nursing and residential care homes across England). The worst was Spain, a country that likes to believe the family is at the heart of its society. Soldiers called in to help tackle the crisis found elderly people in care homes abandoned by staff, with corpses lying in beds; prosecutors are investigating whether to launch criminal cases. In Italy, another supposedly family-orientated nation, police launched probes into what were described as ‘massacres’ in huge care homes. Belgium has the world’s highest Covid-19 death rate, with two-thirds of fatalities occurring in nursing homes during its peak weeks of pandemic as the sector was overlooked in the rush to protect hospitals.

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Up the workers: how Covid reset society's values

By Jenny McCartney

The same issues emerged in North America. The first major outbreak in the United States was centred around a Seattle care home run by one of the largest private operators, which was linked to 40 deaths. Now the world’s richest nation has the planet’s highest death toll due to its dire pandemic response, with four in 10 fatalities linked to long-term care facilities. Canada reacted better, resulting in a relatively low per-capita death rate. Yet an official study found 81% of its fatalities were in care homes — the worst rate among 16 wealthy nations examined and twice the average level in Organisation for Economic Co-operation and Development (OECD) nations. “This report confirms what we all suspected: Canada is not taking care of our seniors as it should be,” said prime minister Justin Trudeau.

Much about this new virus remains mysterious but we do know it impacts hardest on older people and those with underlying health conditions. So we must ask tough questions about these deadly failures. Those let down also include people with disabilities, who comprise two-thirds of the British deaths, according to the Office for National Statistics. And do not be fooled into thinking there was anything inevitable about these fatalities, even among the most at risk groups. Countries such as Australia, Austria, The Netherlands and Slovenia implemented more successful prevention measures in care homes, leading to fewer infections and lower death rates in long-term facilities.

This pandemic has ruthlessly revealed the failure of some social care systems. Many issues have been depressingly similar, with hospitals given highest priority while care homes and their undervalued, overloaded staff were forgotten in the panic of pandemic. So many aspects of the response — from initial political imperatives through to distribution of advice and protective gear — have highlighted the secondary status of this vital public service, as well as that of the elderly and disabled people who rely on it for their daily needs. It is significant to note that carers are paid on average about one-third less than people who do similar jobs in hospitals across OECD nations; it underscores their societal valuation and fosters the frighteningly high churn rates among staff.

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Who cares about carers?

By Mary Harrington

In this country, the health service gets worshipped by politicians and public alike while confusion surrounds fragmented social care — until people suddenly discover they or their loved ones rely on it for survival. The crisis struck after two decades of White Papers, Green Papers and other consultations calling for reform of the sector. Yet real-term spending on social care has fallen over the past decade, despite surging demand, in stark contrast to the additional billions poured into the sacred National Health Service.

Clearly the system needs a huge injection of cash. It is not impossible to find the necessary sums when there is the political will: the £20bn spent furloughing British workers over the past two months alone could fund the care system for a year. But simply ploughing in money will never be enough — not least when in Britain, as in other badly-afflicted nations such as Spain, a key part of the problem has been expansion of the sector by debt-funded private equity firms that rake off vast sums, often using tax havens and complex corporate structures. Their financial model relies on economies of scale delivered through larger ‘homes’ — yet the inevitable consequence is that, when disease strikes, there are more deaths in bigger units crammed with citizens at most risk of dying. One recent Scottish study concluded that care home size was “strongly associated with outbreaks”.

This dark tsunami of death exposes systemic corrosion, sometimes dating back decades. So if extra cash were to go into the system, how would we ensure it delivers better services and ends up in the right pockets? Politicians have a poor record at controlling increases in state spending while the voices often heard representing the sector are simply lobbyists for big providers. This is the first big challenge in any reform.

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How my daughter disrupted my politics

By Ian Birrell

There are, though, more fundamental questions that need to be addressed. Our care system has become essentially custodial: people who need support are warehoused out of sight from the rest of society. Elderly and disabled citizens have been corralled into what the Canadian sociologist Erving Goffman termed ‘total institutions’, designed to reduce risk and facilitate operations for staff at the expense of the freedom and self-respect of the inhabitants.

Goffman, writing some six decades ago, focused on the institutionalisation of mental health patients, something that remains a big problem in Britain with a flawed psychiatric system that relies increasingly on incarceration, restraint and over-medication. More recently, the brilliant physician-writer Atul Gawande has explored the issues concerning treatment of the elderly. He raises concerns over profiteering firms who infantilise their charges while also asking profound questions about the effect of the elevation of our quest for longevity over the quality of life itself.

Today, in the wake of this terrible tragedy, we have a chance to pick up on such threads. We should move beyond the simplistic and rather sterile debate about funding to delve deeper into a floundering system. We need to ask ourselves how we ended up with a system that hides away and often dehumanises the citizens at its core? These are complex concerns. Dementia is a complicated disease to manage, as I saw over several years with my own father who died shortly before lockdown. I am also well aware from my adult daughter of the challenges in providing effective and empowering support for a person with profound disabilities. But as a society, we need to ask ourselves why we so readily commit people to spend years in residential institutions far removed from the warmth and spirit of genuine homes. These issues go to the heart of our shared humanity.

We live in an ageing society in which extraordinary medical advances are keeping people alive longer, but this also leads to more citizens with comorbidities. The Government has responded to the pandemic with crowd-pleasing pledges to build more hospitals and to fix the long-standing problem of families selling homes to fund care. But it is neglecting the more pressing care challenges: sorting provision of decent community services; the drastic need for improved co-ordination between health and social care services; the dwindling support for people in less prosperous parts of the country after the system shifted towards wealthier self-funders. Ultimately, there is a critical need to shift from provision of top-down to bottom-up services that empower users and families rather than bureaucrats, officials and private equity barons. This can only be done by confronting the drift towards warehousing.

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Our shameful social care crisis

By James Bloodworth

There is a glimmer of hope in the Government’s recruitment of Camilla Cavendish to help shape their oft-promised plans for social care reform. The former journalist turned political adviser is author of a well-informed book on ageing societies that pointed to smart innovations in other nations. She highlighted the benefits of ideas such as Germany’s Mehrgenerationenhäuser (multi-generational houses), which provide support for older people alongside facilities for younger generations such as family advice centres and nurseries, and the superb Dutch Buurtzorg model of community nursing based on small local teams delivering care for people in their own homes. Both countries escaped the worst carnage rates among older citizens — as did Denmark, which focuses spending on alternatives to residential institutions such as retirement communities and supported living in flats.

Another person who understands such issues is Doreen Kelly, who has spent 20 years — first in Scotland and now in the south-west of England — getting people out of institutions and into supported living. She runs Beyond Limits, a small firm focused on people with autism, learning disabilities and mental health struggles, and has been alarmed to see the rise of big providers who view care homes as property plays and vulnerable human beings as commodities. “It has become an industry with bigger and bigger places that warehouse people,” she tells me. “But it is difficult to be person-centred when you run large places. The bigger you become, the more you focus on bureaucracy and red tape and accounts rather than delivering personalised care.”

Our default position, she says, is to shut away the old and disabled with other people who are old and disabled, rather than at the heart of communities. This explains why social care can become so forgotten and so dysfunctional in such rich countries — and with such devastating consequences in a pandemic. “There is more to life than being fed, watered and kept warm,” she says. “You can have aspirations in your seventies and eighties but if left in these care homes there is often little to do. We must always place people at the centre of social care systems.” Yet she sees one upside to the Covid crisis since it has sparked a sharp reminder how much we depend on each other. ”And that,” she says “includes everyone.”

The ultimate question, of course, is simple: how much does society really care? Not much in the past, as revealed in such hideous style by this cruel pandemic. So what about in the future?

My son was born with a rare chromosome disorder which renders him severely disabled and needing round-the-clock care. Our mundane everyday comprises uncontrolled life-threatening epilepsy, severe learning difficulties, autism, communication challenges (at 12 he remains entirely non-verbal), excessive hyperactivity, and complete dependency on the adults around him to keep him safe.

Rightly or wrongly, I’ve grown used to the cultural narrative surrounding disability in 2020 Britain. My son is frequently the subject of questions which leave me aghast: When are you going to put him in care? Does he go to school? What’s his life expectancy? Will he ever talk? Frustrating? Yes. Exhausting? Absolutely. But these questions represent something bigger than people’s one-off awkward foot-in-mouth moments. They’re reflective of a carefully constructed, economically-driven system in which people’s worth is reduced to what they are able to contribute on a purely fiscal level.

For almost a decade now the government has focused its efforts on reducing welfare; scrutinising the most vulnerable among us, it has systematically stripped back the support, and ultimately the dignity of those most in need of humanity. The mainstream media presence does nothing to challenge this, with disabled people portrayed through a lens of pity, at best, and demonisation, at worst.

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How my daughter disrupted my politics

By Ian Birrell

I have a son who teaches me humanity every day. He’s shown me how to love beyond what I knew was possible. He’s expanded my empathy and compassion. He’s given me skills in advocacy, and a fighting spirit to speak up for those who have no voice. Because of him, I am a better human. And yet the message from all sides is very clear. My boy is a drain on the system who, due to circumstances entirely beyond anyone’s control, is unable to contribute anything of any worth to society. He needs costly round the clock care, expensive daily medications to keep him alive, and let’s face it, he’s really rather lucky to be here at all.

Back to lockdown. Once the initial cacophony had settled into an urgent background buzz, a key theme emerged in the national conversation — education. Essentially paraphrased by Children must continue to learn, global apocalypse notwithstanding. Schools reacted quickly to the questions surrounding exams. Parents were sent timetables and expectations were communicated. Discussions ensued about getting work online, and ensuring young people were still able to make educational progress in spite of the national situation.

Great, right? Wrong. This response all pivoted around typical kids and mainstream provision, filtered through the blinding middle-class privilege that assumed average ability, regular curriculum, laptop access, supportive furloughed business parents, and stockpiles of basic necessities.

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Is the lockdown doing more harm than good?

By Tom Chivers

Priorities and policies reflect underpinning values. Those values form the building blocks of our human expression. Insipid bias and implicit ableist attitudes pervade the very pores of a society, seeping like water into the cracks we’d much prefer to pretend weren’t there. Except here’s the thing. Winter will inevitably come. And when it does, those cracks will be blown wide open, exposing the crumbling foundation of a culture premised on nothing more than the intangible promise of capitalist success. The coronavirus pandemic may well be our wintry reckoning. People talk about it being indiscriminate, that everyone is at equal risk and that we’re all in the same boat. I disagree. While we’re all undoubtedly weathering the same storm, some of us are cruising by in relative comfort on our superyachts, and others of us are frantically bailing water from last year’s perished dingy we found buried at the back of the shed.

For relative sanity and treading-water-level survival, our family is reliant on hands-on support from no less than 10 additional people every week, not to mention the background team of professionals waiting in the wings to address the constant scene changes of behaviour, epilepsy management, educational support… etc etc.

When lockdown struck, we lost all our support overnight. We were suddenly thrust into trying to manage a child with 24/7 constant care needs, homeschooling three girls in key year groups, and enabling the keyworker of the house to continue his job as part of the social care response to the pandemic. Let me reiterate. With all the support we were receiving prior to the coronavirus chaos, we were at treading-water-level survival. It was already hard. We were already exhausted. It was never enough anyway. But to have it all ripped from under us in an instant? Hellish.

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Who cares about carers?

By Mary Harrington

Let’s be clear on this. Children with disabilities and special educational needs are categorically some of the most vulnerable humans in the UK right now. My son is fully reliant on adults to meet all his needs, educational and otherwise. He attends a specialist provision and his curriculum is highly individualised to support basic life skill development. Reading and writing will likely never happen, but that in no way renders his education null and void.

The Government’s initial announcement that children with Education, Health and Care plans would continue to attend school proved nothing more than lip service. We have just entered the seventh week of no school provision: my son could not be safely managed in the school environment on a skeleton staff. It was made crystal clear from the start of lockdown that the school would not be open to him, regardless of the glaring irony that those needs and challenging behaviours constitute the very reason he should be prioritised for support, not pushed away.

All children with EHCPs have a significant level of need which in and of itself renders them more vulnerable than their typical peers. And yet, again, the children most in need are the children first sidelined in a crisis. The most recent move to nullify the very same documents that legally protect our children just stacks insult onto injury. The government have relaxed the legal mandates to provide the support outlined in EHCPs — local authorities have, in essence, been told to ‘just do your best’. Reasonable endeavours.

Now, I’m a pragmatic person. I understand providing the exact support to every child in the current socially-distanced dystopia is nigh-on impossible. But when you start reducing the solid legality to vague ambiguity, it only serves to pull at the seams of an already unravelling society.

Humanity matters. Our children matter. The richness and complexity of humanity cannot be reduced to a figure per capita. We see our true selves in those times where the world is momentarily shaken up and broken; where the contrived order evaporates and we are stripped back to bare souls. Resist the idea that economy and financial viability have to come first. Value people for people and the inherent intrinsic worth that comes with being human. Our children matter. Humanity matters.

Westminster politicians promised reform but just played pathetic tribal games that stymied attempts to salvage the shattered sector. Over the past two decades, there have been 12 White Papers, Green Papers and other consultations about social care in England plus five independent reviews. Yet nothing was done amid an obvious cash crunch. Real-term spending was £300m lower when the coronavirus pandemic struck than a decade earlier, despite surging demand from both older and working-age people. NHS spending soared over the same period by about £26bn, yet there was a constant chorus of complaints about funding

Meanwhile, big corporate players, some funded by debt while sending profits to tax havens, moved in to plunder the forgotten sector — from old people’s homes, through to children’s services. The bosses made millions while the staff actually delivering care on the ground were paid peanuts. People with autism and learning disabilities were locked up in abusive detention  rather than given the assistance to live in the community with decent support. Other desperate citizens and their families, including an estimated 1.4m older people, were simply denied support as services were starved of funds. Yet only those trapped in the system seemed to really care.

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How my daughter disrupted my politics

By Ian Birrell

Many families end up fighting a sector that is meant to support them. “Every single good thing we’ve achieved for our son has been with a lawyer in the background,” the mother of one man with profound disabilities emailed me this morning. “Isn’t this a terrible indictment for our country?” She is right.

Yet as fear stalks the land, there is sudden recognition that social care is an essential part of the British fabric of life. Carers are applauded in appreciation of lives risked on the coronavirus frontline. There is horror over the hideous death toll in care homes, even if many fatalities are not being properly recorded. And Matt Hancock, remembering his full title is health and social care secretary, has put a new badge on his suit lapel.

The current carnage sweeping through care homes was sadly predictable since they are filled with people who are old or may have underlying health conditions. Britain could see it coming when the impact on nations hit first by the disease was clear; one study from five European countries found between 42% and 57 % of all Covid-19 deaths came in care homes. This makes the government’s sluggish response to the virus and multiple failures to protect people on the pandemic frontline even more damning.

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Our shameful social care crisis

By James Bloodworth

But even now discussion on the impact on social care focuses largely on old folk in care homes. About one-fifth of people in such places, however, are under the age of 65 — and more people who rely on care receive the support in their own homes than in residential homes. Indeed, the increase in demand for care services rose more than twice as fast for working-age adults as for elderly people over the past five years, even in a rapidly ageing society. Meanwhile millions of exhausted family carers remain largely ignored.

Look at the disturbing results of an audit by Chris Hatton, professor of disability at Lancaster University, and the Voluntary Organisations Disability Group (VODG). It found that only 36 out of 6,906 frontline staff working with working-age adults in both domestic and residential care settings had been tested for the virus, along with just 61 out of 9,708 of the people they were supporting. Is it any wonder with such low testing rates they found more than one in eight staff to be off sick or self-isolating, heaping more pressure on struggling services? “The figures for disabled people being tested, as well as the staff supporting them, are alarmingly low,” said Rhidian Hughes, the chief executive of VODG.

Hughes added that the government’s response must recognise support for disabled people “and not simply equate social care to older people’s care homes”. As I have seen for myself with a daughter reliant on support, and heard from so many other families, advice offered from start of this crisis has been hopeless. Typical is a new government edict for people using direct payments to “purchase their own personal protective equipment from their preferred supplier” when many have never needed such stuff before. Amazon is more use than the authorities. But perhaps we have an advantage in these strange times since our lives have been filled with fragile uncertainty for so many years, living with someone who has a disruptive and potentially-fatal health condition. Stresses remain intense, however, especially when it is impossible to isolate given the need for care support.

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Who cares about carers?

By Mary Harrington

There is much talk that things must change after this crisis. Typical was a punchy column by Rachel Sylvester in The Times, arguing that the government will have to scrap planned immigration rules that keep out carers. She was right to say these are disastrous for a sector with 122,000 vacancies at start of this crisis that relies heavily on foreign workers (as I have seen with deep gratitude). And also to point out the obscenity of the government raising the NHS surcharge — imposed on foreign workers and each member of their families on top of other immigration fees — from £400 to £624 for health and social care employees performing heroics. Others have called for a Royal College to lift the status of carers, better training, more qualifications.

Yet just as in the aid sector, many of the solutions suddenly being suggested follow the demands of big corporate players and their front organisations rather than real needs on the ground. Take the idea of making carers eligible for the NHS visa. Yes, this might help a bit. But it suits interests of providers that can recruit in Poland or Portugal to grab scores of staff. It does not necessarily help those using direct payments to find carers or families searching for help with a relative suffering dementia — or else it forces them to hand thousands of precious pounds to agencies. And what about the therapists and younger special needs teachers who earn too little for entry, even the artists and yoga instructors who can enhance lives of people with disabilities? Life should be for living, not existing.

Many of the finest foreign carers come here searching for work and discover their aptitude for supporting others after taking low-paid jobs rejected by most Britons. Care is hard to define, often tough and with anti-social hours. The best practitioners have qualities such as compassion, empathy and patience rather than the sort of formal qualifications that suit bureaucrats. As Hatton points out, this is backed by people with learning disabilities using services. “The key care competences are human and revolve around relationships,” he said. “Blanket qualifications do not help you sort out who are the best carers. You can teach skills needed on the job.”

If we want to solve problems surrounding care exposed by this crisis, the solutions go deep into society. Look again at the immigration system. The government ignored cries of pain from the care sector while constantly talking about luring “the brightest and the best”. Never any mention of the most caring and compassionate, of course. This stance defined people wanting to work in a crucial public services as being of less worth to the country even than corrupt billionaires from China and Russia seeking a bolthole.

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Why are we locking up patients for profit?

By Ian Birrell

It will take more than shuffling a few visas to cure such ills. Ultimately, the struggling care sector shows an ugly reflection of our society. It reveals the need to rethink the meaning of both life and death. Why are such large numbers of older and disabled people meeting lonely ends in care homes when coronavirus strikes? It is because too many are crammed into large and impersonal units that keep them out of sight and out of mind. Services have been consolidated in bigger places to save cash, encouraged by grasping big firms. So these people are not welcomed as cherished citizens, living in real homes filled with warmth of humanity in midst of communities, but hidden away due to their disabilities or decrepitude at end of life.

This is the same mindset that determines them less important for testing, deems them less valuable if life-saving ventilators are rationed, lets their deaths go unrecorded in this crisis, leaves them at the mercy of money-grabbing profiteers delivering dismal services, allows some citizens with autism and learning disabilities to be locked up in denial of their human rights. The attitude is so infectious even people caring for them are seen as more disposable than doctors or nurses, workers in institutions of minimal value on minimum wages. 

The problems plaguing this Cinderella sector will not be solved with sticking plaster technocratic reforms and a cash splurge. For they are at heart about the absence of dignity, the imbalance of values, the loss of shared humanity and lack of respect for all citizens in society. It takes more than a minute’s clapping to show we really care.

That was my brief foray into tribal politics before I became an informal adviser to David Cameron as he tried to modernise the Tory party and later, briefly, his speechwriter. Like many young people exploring politics, my views evolved with maturity from a mushy dislike of Thatcherism’s toughest edges through to fierce libertarianism. But as Edwina Currie said in one of my favourite quotes: everyone is a libertarian until they have children.

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How motherhood put an end to my liberalism

By Mary Harrington

Certainly this was true for me. I remain a liberal, opposed to overbearing control of individuals or the economy. But now I understand the powerful need for community and state to bind together society.

For when your child is born profoundly disabled, it changes everything in your life — including your politics. My life was comfortable and smooth until the birth of my daughter 26 years ago. I went into national newspaper journalism after private school, university and a local paper in the West Midlands. My wife had a thriving career. But all that was shattered with the arrival of our second child. Seizures started wracking her tiny body a few weeks after birth. We soon discovered she was visually impaired and would never walk or talk, although complex epilepsy — a horrible condition — remains the core difficulty. A decade ago, we gained a label for her problems, with diagnosis of a newly-discovered genetic condition called CDKL5.

The impact of such a revelation is like a terrible crash. Your life is derailed, your plans wrecked, your dreams dissolve. I went through depression, which later I learned was a form of grieving for the child I had thought I was going to have, before slow acceptance of the gorgeous daughter who really had arrived. Yet even as you emerge from this darkness, you are buffeted by the awful battles that you find to your horror accompany such trauma. You are confronted by a system that is supposed to support parents but instead simply adds to the anguish, the confusion and the exhaustion as you try to navigate a bureaucratic maze you had no desire to enter. Meanwhile you attempt to hold together your family, your friendships, your career. It is no surprise many crumble under such pressure.

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Our scandalous disregard for disability

By Ian Birrell

This was my political awakening: a profound and highly personal insight into the failings of the state while also witnessing its importance in supporting citizens in crisis. I have seen first-hand — and later as a journalist — that behind the hollow worship of the National Health Service lies an often inadequate system that fails many of those most in need. This is seen again with recent shocking revelations of how the NHS locks up hundreds of people with autism and learning disabilities in abusive detention. Many staff are brilliant; one palliative care team held us afloat at a desperate time. Others can be arrogant, blasé and breathtakingly patronising towards parents and patients. Not all doctors and nurses are saints.

When you meet other parents in the same situation, it is like being members of a secret club with shared experiences that everyone else struggles to comprehend. You soon learn the frustration of repeating endlessly the basic details of your child’s condition to medics and officials who have not bothered to glance at their notes after you have spent another night of screams, seizures and sleeping on the floor to protect your child.

You suffer the bewilderment of confronting the paucity of services, even school places, as you enter the underworld of disability in a society that seems not to care about such citizens. Social workers seem to change annually. Departments bicker over budgets. You rely on people who ignore emails and imply they know best. Then you fall off the cliff again when you move into adult services and are forced to start afresh. No wonder you cling desperately to those people who show humanity and real desire to help.

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Many of the key problems are down to resources since it can be costly to support people with severe disabilities. The care system, for example, has fallen into such decay that it has become a national disgrace — yet note how debate focuses on middle-class families forced to sell homes to fund care for elderly relatives. It is simplistic to focus only on funding, however, when problems are attitudinal as well as systemic. It is about power, about politics, about people.

The biggest hurdle for families such as mine is not coping with dramatically changed life circumstances, although that is challenging, costly and relentless, but coping with a dysfunctional system and societal indifference. It is still hideous to watch my daughter have a seizure — and I have seen hundreds over the years. But with the right support, which we managed to win finally with health service and local authority backing, she has a good life.

So how did it change my politics? One legacy is deep scepticism towards the state and those proclaiming its brilliance, from the sacred health system through to that creaking care system. This leaves me annoyed when I hear weary platitudes about the wonders of the NHS, when for all its fiscal efficiencies it has poor outcomes on many key conditions as well as inadequate patient safety history, especially for some most in need such as people with learning disabilities.

Another consequence is despair over politics after seeing the complacency and incompetence of too many in power when confronted with problems that are devastating the lives of those who need help. My loathing for tribalism has intensified, along with my readiness to challenge charities that fail to serve the people they claim to help. I have always been contrary but my concerns over abuse of power, the arrogance of privilege and the platitudes that accompany contemporary politics have grown far stronger.

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Can we be trusted with euthanasia?

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Yet I am no longer a libertarian. I have learned the crucial importance of the state, families and communities in assisting the most vulnerable citizens in society. This is why it was criminally irresponsible of the coalition government to overload austerity on local authorities, saving Whitehall some pain but storing up huge problems that have now exploded into slashed local services, school exclusions and lack of respite support.

This desire for stronger communities was why I admired the original idea of the Big Society, before it became entwined with simply cutting the public sector. It is why I despair over the toxicity of Brexit as it inflames divisions. And it is why I focus much of my domestic journalism on attempting to highlight social problems afflicting some of the most excluded and traumatised in society, from addicts through to refugees, prisoners, failed patients and people with disabilities.

The arrival of a child can change a human being: with that fusion of adoration and concern, they become instantly central to existence. When that child is different or profoundly disabled, you rapidly discover that you face a lonely and long fight for the basic things in life that most other parents take as normal. Just look at how many youngsters with autism are excluded from schools, how people with disabilities are excluded from the diversity debate, how many people with learning disabilities die through sheer indifference in hospitals. You worry over what will happen as you grow older or are no longer around.

My interest in politics has never waned, even in these tumultuous days when Westminster has been infected with such puerility and populism. Yet I have learned it is not a game, some kind of spectator sport — but a struggle of immense importance that can make the difference between survival and disaster, even sometimes life or death.

This piece was originally published on 15 Oct 2019

The last few years of politics have tested loyalties and fractured tribes; for many, it’s tempting to disengage altogether. We have asked contributors to remind us of why politics matters, by reflecting on their formative years. This series of political awakenings shows how family, feelings and unlikely accidents can shape a lifetime of politics…

I was one of those strange kids who was always interested in politics, almost as a spectator sport, learning the names of prime ministers alongside those of great footballers. When I went to university, I wandered around the freshers’ fair several times debating which party to join before plumping for the Conservatives. This was largely down to inate contrariness rather than any sense of ideology beyond an instinctive liberalism. One year later I was president. Then I went to a Federation of Conservative Students conference, witnessed overt racism and pulled my branch out of the organisation to the fury of the Party chairman.

That was my brief foray into tribal politics before I became an informal adviser to David Cameron as he tried to modernise the Tory party and later, briefly, his speechwriter. Like many young people exploring politics, my views evolved with maturity from a mushy dislike of Thatcherism’s toughest edges through to fierce libertarianism. But as Edwina Currie said in one of my favourite quotes: everyone is a libertarian until they have children.

Suggested reading

How motherhood put an end to my liberalism

By Mary Harrington

Certainly this was true for me. I remain a liberal, opposed to overbearing control of individuals or the economy. But now I understand the powerful need for community and state to bind together society.

For when your child is born profoundly disabled, it changes everything in your life — including your politics. My life was comfortable and smooth until the birth of my daughter 26 years ago. I went into national newspaper journalism after private school, university and a local paper in the West Midlands. My wife had a thriving career. But all that was shattered with the arrival of our second child. Seizures started wracking her tiny body a few weeks after birth. We soon discovered she was visually impaired and would never walk or talk, although complex epilepsy — a horrible condition — remains the core difficulty. A decade ago, we gained a label for her problems, with diagnosis of a newly-discovered genetic condition called CDKL5.

The impact of such a revelation is like a terrible crash. Your life is derailed, your plans wrecked, your dreams dissolve. I went through depression, which later I learned was a form of grieving for the child I had thought I was going to have, before slow acceptance of the gorgeous daughter who really had arrived. Yet even as you emerge from this darkness, you are buffeted by the awful battles that you find to your horror accompany such trauma. You are confronted by a system that is supposed to support parents but instead simply adds to the anguish, the confusion and the exhaustion as you try to navigate a bureaucratic maze you had no desire to enter. Meanwhile you attempt to hold together your family, your friendships, your career. It is no surprise many crumble under such pressure.

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Our scandalous disregard for disability

By Ian Birrell

This was my political awakening: a profound and highly personal insight into the failings of the state while also witnessing its importance in supporting citizens in crisis. I have seen first-hand — and later as a journalist — that behind the hollow worship of the National Health Service lies an often inadequate system that fails many of those most in need. This is seen again with recent shocking revelations of how the NHS locks up hundreds of people with autism and learning disabilities in abusive detention. Many staff are brilliant; one palliative care team held us afloat at a desperate time. Others can be arrogant, blasé and breathtakingly patronising towards parents and patients. Not all doctors and nurses are saints.

When you meet other parents in the same situation, it is like being members of a secret club with shared experiences that everyone else struggles to comprehend. You soon learn the frustration of repeating endlessly the basic details of your child’s condition to medics and officials who have not bothered to glance at their notes after you have spent another night of screams, seizures and sleeping on the floor to protect your child.

You suffer the bewilderment of confronting the paucity of services, even school places, as you enter the underworld of disability in a society that seems not to care about such citizens. Social workers seem to change annually. Departments bicker over budgets. You rely on people who ignore emails and imply they know best. Then you fall off the cliff again when you move into adult services and are forced to start afresh. No wonder you cling desperately to those people who show humanity and real desire to help.

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Many of the key problems are down to resources since it can be costly to support people with severe disabilities. The care system, for example, has fallen into such decay that it has become a national disgrace — yet note how debate focuses on middle-class families forced to sell homes to fund care for elderly relatives. It is simplistic to focus only on funding, however, when problems are attitudinal as well as systemic. It is about power, about politics, about people.

The biggest hurdle for families such as mine is not coping with dramatically changed life circumstances, although that is challenging, costly and relentless, but coping with a dysfunctional system and societal indifference. It is still hideous to watch my daughter have a seizure — and I have seen hundreds over the years. But with the right support, which we managed to win finally with health service and local authority backing, she has a good life.

So how did it change my politics? One legacy is deep scepticism towards the state and those proclaiming its brilliance, from the sacred health system through to that creaking care system. This leaves me annoyed when I hear weary platitudes about the wonders of the NHS, when for all its fiscal efficiencies it has poor outcomes on many key conditions as well as inadequate patient safety history, especially for some most in need such as people with learning disabilities.

Another consequence is despair over politics after seeing the complacency and incompetence of too many in power when confronted with problems that are devastating the lives of those who need help. My loathing for tribalism has intensified, along with my readiness to challenge charities that fail to serve the people they claim to help. I have always been contrary but my concerns over abuse of power, the arrogance of privilege and the platitudes that accompany contemporary politics have grown far stronger.

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Yet I am no longer a libertarian. I have learned the crucial importance of the state, families and communities in assisting the most vulnerable citizens in society. This is why it was criminally irresponsible of the coalition government to overload austerity on local authorities, saving Whitehall some pain but storing up huge problems that have now exploded into slashed local services, school exclusions and lack of respite support.

This desire for stronger communities was why I admired the original idea of the Big Society, before it became entwined with simply cutting the public sector. It is why I despair over the toxicity of Brexit as it inflames divisions. And it is why I focus much of my domestic journalism on attempting to highlight social problems afflicting some of the most excluded and traumatised in society, from addicts through to refugees, prisoners, failed patients and people with disabilities.

The arrival of a child can change a human being: with that fusion of adoration and concern, they become instantly central to existence. When that child is different or profoundly disabled, you rapidly discover that you face a lonely and long fight for the basic things in life that most other parents take as normal. Just look at how many youngsters with autism are excluded from schools, how people with disabilities are excluded from the diversity debate, how many people with learning disabilities die through sheer indifference in hospitals. You worry over what will happen as you grow older or are no longer around.

My interest in politics has never waned, even in these tumultuous days when Westminster has been infected with such puerility and populism. Yet I have learned it is not a game, some kind of spectator sport — but a struggle of immense importance that can make the difference between survival and disaster, even sometimes life or death.

I felt the full force of this sad and difficult news story. Three years ago, while heavily and painfully pregnant with my second child, I emerged from Westminster tube to find an array of 10 feet high posters of dismembered foetuses. The tiny hands and feet I’d been looking at on a scan the previous day were displayed in agonising detail, post-abortion. I arrived at our nearby office soon after, white-faced and in tears. I promptly vomited. The image on the ad recently taken down was less graphic, but I can imagine Stella may still have been having similar days.

I host a podcast about dealing with difference and having difficult conversations, and this topic is excruciatingly hard to deal with. It is a deeply personal one. And for millions of women and couples, their choices either way are inescapable parts of their life stories. The issue also forms one of our deepest moral divides, and one of the hardest to find common ground on.

Two intensely serious moral goods are at stake. First is the freedom of a woman to control her own destiny in a world which is stacked against her; the freedom to choose the things she is prepared to ask her body to endure, and not be forced into the fundamentally self-sacrificial role of motherhood.

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The second is the right of a vulnerable, voiceless and at least potentially tiny human to exist. Both these arguments have serious moral force, but they seem mutually exclusive. Each side picks the one they feel carries the most moral weight. If they — we — are honest, we admit that this choice is inevitably at the expense of the other. When dishonest, each seeks to erase the cost to the other and with this comes the utter erosion of trust.

This week, I’ve also been reading a new Rowan Williams lecture on political tribalism. He is typically brilliant at spearing our ludicrous tendency to see everyone as tribal except ourselves and says: “Political tribalism is above all a shrinkage of the scope of mutual recognition: I resolve not to think of the other’s view as sharing any of the moral anxieties or emotional tensions I experience.”

Mutual recognition in the abortion “debate” has broken down to such an extent that, as we’ve seen, individual pregnant woman are targeted with distressing images, and those who want to raise qualms about even late-stage, gender-specific or disability-focused abortions are written off as misogynists and bigots. Sally Phillips, the comic actor and mother of a child with Down’s Syndrome, has received torrents of abuse for suggesting that new tests and NHS procedures might be influencing women to terminate pregnancies unnecessarily. She is pro-choice herself.

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The way this space is currently framed and the tactics being used are entrenching these divides, deeper and deeper, and the solution Williams offers is absurdly simple and fiendishly difficult. Listening.

“[we need to nourish] those practices…that allow space for hearing the memory of discovery and conviction that lies behind an opponent’s view and seeking to recognise comparable kinds of moral energy…   [we need to give] patient attention to stories and priorities not native to us; and this requires the construction of environments in which there is enough trust for such things to be articulated.”

I doubt we will ever resolve conflicts around abortion, because the starting points of moral reasoning and the underlying sacred values are so different. Many of those reading this will feel that to listen would be a distraction from the most important thing, which is winning – either ‘saving lives’ or ‘protecting women from ideological oppression’. The trouble is that the kind of tactics that we would use if winning were our only aim would actually do more harm than good.

I would guess, for instance, that Stella Creasy now feels more committed to her pro-choice position than she did before that billboard went up. The same goes for those who have called disability activists misogynists for wanting to think about the way legal late-stage abortions for minor disabilities frames the way we see disabled people.

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Our instinctive psychological defence of our identity means that when we are presented with evidence or arguments which contest a deeply held belief, we are likely to harden our original position. Unless, of course, that evidence and those arguments are presented kindly, carefully, warmly — and by messengers we trust.

Stephen Martin and Joseph Marks, in their new book Messengers, which examines why we listen to some messengers and not others, argue there is one trait which trumps all others in efforts to persuade. Trustworthiness.

So while we doubtless can’t do anything to resolve this deep rift, we can at least change the terms of the debate so that is kinder to all those concerned, not least the many women for whom this is a live issue. Personally targeted billboards are not helpful. They don’t build trust — quite the opposite. And the same goes for any attempts to close down expressions of pro-life positions more generally. For the sake of women everywhere, not only the pregnant ones, we should do better.

A day later in Paris, Jean Vanier died. He was no celebrity and held no high public office, yet the tributes paid since his death give a flavour of how highly he was regarded. A “spiritual giant” and a “living saint” were some of the more restrained epithets.

Vanier was the son of a Canadian diplomat raised in Canada, France and the UK, who had served in the British and Canadian Navy. Uneasy with the bravado and competitive atmosphere of the military, he moved into academia, teaching philosophy at the University of Toronto. In the early 1960s, he started visiting a home for people with mental illness near Paris. Shocked by the conditions in which they lived, he began forming a revolutionary idea shaped by his Christian faith.

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Vanier bought a run-down house in the village of Trosly-Breuil north of Paris, where he invited two men with learning difficulties, Raphaël Simi and Philippe Seux, to build with him a small community. Others soon joined, and by the time Vanier died on 7 May this year, the community had grown into a movement known today as l’Arche (the Ark), comprising more than 140 different communities in 35 countries around the world, 10 of them in the UK.

The concept behind l’Arche is simple. Rather than placing people with additional needs into what used to be called mental institutions, or even ‘independent living’, it brought different people together to live in the same communal space. The able-bodied lived alongside the disabled, those with learning difficulties alongside those without.

l’Arche was not a charitable movement based on the strong helping the weak. At its heart lay the conviction that mental or physical abilities bear no relation to the value and beauty of an individual human being. Those with learning difficulties, rather than recipients of help, come ready with much to teach those of us without learning difficulties.

Time and time again, members of the community say being part of l’Arche has led them to form deep friendships with people they might never have encountered otherwise, and that wisdom in these friendships flows in exactly the opposite way we might expect.

Messy, complex and often trying, Vanier’s radical idea is, nonetheless, that if you place the beautiful, the famous and the talented at the centre of a community, everyone inevitably feels inferior. Placing the weak and forgotten at the centre, by contrast, automatically includes everyone. By spending time with the weak and vulnerable, we learn to confront our own vulnerabilities – the very thing we spend most of our time trying to hide.

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As Vanier once said: “I am struck by how sharing our weakness and difficulties is more nourishing to others than sharing our qualities and successes.” He is also recorded as saying: “Those I have lived with have helped me to recognise and accept my own weaknesses and vulnerability. I no longer have to pretend I am strong or clever or better than others. I am like everybody else, with my fragilities and my gifts.”

Our celebrity-obsessed world, epitomised by the Met Gala, is one whose currency is influence, fame and the power that comes with it. The result is a society in which people feel the need to prove themselves more beautiful, clever or influential than everyone else. The kind of people Vanier spent his life with are, according to Vanier “not seeking power, they are seeking friendship”. These are the kind of people who have the ability to remind us which matters more.

St Paul once wrote: “Power is made perfect in weakness. So, I will boast all the more gladly of my weaknesses, so that the power of Christ may dwell in me.”

It is an idea few understand, but one which Jean Vanier and those he lived with fortunately did. And for that, his story offers us a radical choice about the way in which we choose to live today.

The perfect power of weakness

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So should we let individuals make the ultimate decision: to control the timing and nature of their own death when they have debilitating and terminal health conditions?

This question cuts to the heart of our humanity and rights. Several places in North America and Europe already permit death-on-demand in different forms. Now, as pressure grows for reform in the UK, often driven by powerful testimonies from terminally-ill people, the influential Royal College of Physicians is polling its 35,000 members on whether the law should be changed. The body has said it will ditch its opposition to any change unless six in 10 doctors are opposed.

For Britain to follow Belgium, Canada and the Netherlands down the path towards euthanasia, would be significant. Our nation is seen as a pioneer in the creation of the hospice movement and development of palliative care thanks to the late and very great Dame Cicely Saunders. But surveys indicate there is strong public support for change. I am, as an atheist and unashamed liberal, philosophically sympathetic to those seeking legalisation of assisted dying.

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Yet, ultimately, I am concerned about any proposed change. Putting aside my admiration for our palliative care system, which I have seen at first hand within my own family, this is for two key reasons. The first was driven home to me two months ago when I spent a few days investigating the impact of this issue in Belgium.

This was the world’s second nation to legalise euthanasia and almost 15,000 people have officially ended their lives this way since 2002. It was impressive to see how assisted dying had become entwined within health and palliative systems. Beyond those with strong religious beliefs, I found few concerns over people with late-stage cancer or the cruellest physical conditions opting to terminate their lives. Some doctors remained uneasy about killing patients themselves with fatal doses of drugs, yet were content to assist people who had made rational choices to end their own lives. Other medics were more sanguine, such as the activist doctor I met who had personally despatched 140 people including two of his own friends.

Yet there is no doubt that in Belgium there is a slippery slope: as euthanasia becomes normalised in medicine and society, the number of cases surges and the scope widens. Look also at the Netherlands, where assisted dying now accounts for one in 25 deaths and right-to-die activists are pushing for ‘tired of life’ legislation that would permit any elderly person over a certain age to obtain drugs to kill themselves on demand.

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“The process of bringing in euthanasia legislation began with a desire to deal with the most heartbreaking cases – really terrible forms of death,” the ethicist Theo Boer, a member of a Dutch regional euthanasia board for nine years, was quoted as saying in The Guardian last month. “But there have been important changes in the way the law is applied. We have put in motion something that we have now discovered has more consequences than we ever imagined.”

Belgium, for example, now permits euthanasia for children. It has allowed at least three minors – two of whom were children under 12 – to receive lethal injections since the law was changed five years ago. It also allowed a pair of deaf adult twins who feared turning blind to kill themselves. And it is available for those with ‘unbearable’ psychiatric pain. If we accept people have the right to death as relief from intense suffering, then this makes ethical sense, since there should not then be distinction between physical and mental agony. Yet such distress is harder to detect and more open to subjective interpretation.

It can also be highly complex. One woman scientist told me she felt more comfortable and in control of her life once she had been permitted to choose her own time of death, and experts pointed out that euthanasia is kinder on a patient and their family than the grisly alternative of suicide. Yet it is hard not to be unsettled when you hear, as I did, the tale of a depressed woman aged only 21 going through a legal process that will end in death. I also heard concerns from psychiatrists over elderly people facing pressure to kill themselves; in at least one case, simply to enrich their family.

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It is, therefore, no coincidence that both Belgium and the Netherlands face landmark court cases over controversial deaths following this surge in numbers. One involves the diagnosis with autism of a 38-year-old woman, the other concerns the disturbing incident of an older woman with dementia who had to be held down by her family as she struggled during her final injection.

Which leads me to my second cause for concern: how do we protect vulnerable people once the state starts sliding inevitably down that slippery slope towards the place where euthanasia becomes routine?

It seemed incredible that an autism diagnosis could trigger a euthanasia decision. I discovered a quartet of British and Dutch professors who also had serious concerns, having reviewed cases of people with autism spectrum disorders or learning disabilities who were granted euthanasia. As these experts pointed out, feelings of isolation and an inability to participate in society had come to be deemed as ‘unbearable suffering’, the legal requirement for ending a life. “Suffering was described in terms of characteristics of living with an autism spectrum disorder,” according to one of their papers, “rather than an acquired medical condition.”

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This is a terrifying glimpse of how society fails such people – something that chills me to the core as father of a young woman with profound learning disabilities. Surely the real cause of their suffering was the lack of support that might enable them to live contentedly with their conditions, compounded by the woeful lack of acceptance of people who view the world differently which still stains so many societies.

Back in Britain, I have been investigating how hundreds of people with autism and learning disabilities are locked up in horrific and unsuitable psychiatric units. This barbarism includes being slammed in solitary confinement, fed like animals through hatches and on the floor, forcibly injected with powerful drug cocktails, and even children violently restrained by teams of adults. Remember that Belgian scientist I spoke to who was in such mental pain she was granted euthanasia? Her troubles, she told me, went back to when she was held in similar conditions as a teenage girl – yet still we incarcerate scores of teenagers today in the same way, wrecking their lives.

Private operators have moved in like vultures in Britain to exploit this trade in incarcerating human beings, while politicians make empty pledges to end such disgusting abuse. Health secretary Matt Hancock is only the latest to express horror and then kick the issue into the long grass. Sadly, this symbolises again how citizens with autism and learning disabilities are seen as lesser people – along with all the continuing abuse, the hate crimes, the bullying in residential homes, the school exclusions, the dearth of jobs and far too many early deaths in the health system.

So, yes, I remain sympathetic to the concept of assisted dying for those with chronic conditions. But as I have seen in Belgium, once the door is opened, it does not take long for a nation to normalise death on demand. And while I’m not anxious on moral grounds, I do fear for the safety of the most excluded people in society. Until our country shows it respects the human rights of all its inhabitants, then we simply cannot be trusted to handle such a potentially lethal reform.

This issue of diversity and representation is an increasingly hot topic. No white actor would dream of playing a black character these days, and we are witnessing a welcome surge in leading roles for female and ethnic minority stars, writers and film-makers. Last year, Scarlett Johansson dropped out of a role playing a transgender man after a backlash that she said, “sparked a larger conversation about diversity and representation in film”. Then, last month the award-winning actor Darren Criss declared he would no longer portray gay characters. “I won’t be another straight boy taking a gay man’s role,” he told Bustle.

Yet this contentious issue is most complex when it comes to disabilities. Here is is the most marginalised community in society, particularly those with learning disabilities, so you might presume there would be a sharp focus on doing everything possible to boost its visibility. But the film and television world, for all its self-proclaimed liberalism, has a terrible track record of depicting it on screen. Almost one in five Americans has a disability, yet a study of 900 films found barely one in 20 such characters with speaking parts. Another survey of 17 characters with disabilities in prominent streamed series revealed that only two of the actors themselves had disabilities.

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We are hard-pressed to think of a major American actor with a disability; instead, Jake Gyllenhaal’s body is digitally altered by computer to play a double amputee in Stronger a film about the Boston marathon bombings, and Joaquin Phoenix lands the starring role as a quadriplegic in Don’t Worry, He Won’t Get Far on Foot. True, bigotry will not be beaten by a few film roles – but movies have massive global influence in determining how we see and shape the world. And when citizens with disabilities look at their screens, they see again and again the reinforcement of exclusion that sees them shunted to the fringe of society and shut out of workplaces.

This is a big issue in Britain too. Nearly one in five people has some form of disability according to official figures, but three years ago the BBC admitted this hefty minority made up just 1.2% of its faces appearing on television. Little wonder the corporation was recently criticised for casting an able-bodied actor in a remake of The Elephant Man – including by Adam Pearson, an actor with the same condition as the central character who was not even given an audition. “I would have liked to have gotten a phone call,” he told LBC, before adding: “It’s a systemic problem, not only in the BBC but industry-wide.”

Pearson is absolutely right. But at the same time, these roles give rise to performances that stretch the finest actors – as highlighted by another study that found almost one in six of the Oscars for best male performer were handed out for portrayals of disability or mental illness. And as critics of reserving roles only for minority actors point out, surely acting is about the ability to convincingly portray other people – as was shown so brilliantly by Sir John Hurt in the original version of The Elephant Man.

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Cranston defended himself by insisting he had spent time with people with quadriplegia “to get to know what they were thinking and how they’ve adjusted in their lives”. He also pointed out, correctly, that there are no actors with disabilities that had sufficient fame to finance and win big audiences for such a film. “Are there any actors who have reached any kind of star status to be able to be considered?” he asked. “I think by not coming up with an answer to that is the answer to that. There is a dearth of opportunity for actors with a disability.”

And here lies the key point behind this issue. Like many other sectors, the media has ignored people with disabilities in the debate on diversity. Just look at how the repellent Frankie Boyle, who mocked people with learning disabilities, still wins commissions from the BBC and The Guardian that would have been denied to him rightly if he had made racist gags.

Things are changing slowly, highlighted by shows such as Call The Midwife and Silent Witness offering strong roles for actors with disability. Yet the focus should not just be on starring roles, crucial as they are, but on those ordinary characters and presenters who flit across our screens.

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I was struck, watching the French police series Spiral a few years back, to see a computer expert played by an actor with dwarfism who did his job for a few moments then disappeared. What was so extraordinary, and wonderful, was that this man’s disability was irrelevant to the role he was playing – a data analyst for the detectives. He was just an ordinary person who happened to have a disability doing an ordinary job – like millions of other people with disabilities living humdrum lives, just like the rest of us. Yet I clocked suddenly how rare it was to see such a character on television.

More people like this should be turning up in everything from cosy sitcoms through to horror films. People with disabilities have been seen too often only as symbols of tragedy or hailed for amazing triumph over adversity. This is why the fight should not simply focus on actors becoming big enough stars to have names on posters and pull audiences, along with all those key roles behind the cameras. We also need to see the butcher chopping beef who happens to have Down’s Syndrome, the barrister taking a brief who is in a wheelchair and the bank clerk at the counter with autism. Only then will we see the full diversity of real life reflected in drama.

Twenty five years ago, I entered the twilight world of parents with children with special needs. My beautiful daughter was born with a rare genetic condition, CDKL5, that leaves her unable to communicate with words, see, walk or live independently. She needs 24-hour care to help support her complex epilepsy.

I thought I was on my own before the advent of the internet, with no support network. I did not realise that I was among the hundreds of thousands of parents in the UK who have a child with special needs, as almost all were out of sight and out of mind. Shockingly, I was told by some well-meaning people it would be better to put her in a home and forget about her.

This is changing but progress is slow. People with disabilities are appearing in adverts such as the latest McCains ad or in television programmes like Call the Midwife, but these are the exceptions rather than the rule. In news, the narrative is closely focused in three ways.

There are the extreme stories. The shock at the abuse at Winterbourne View; or the despair when a young man dies in a bath in an NHS Treatment and Assessment Unit, in Oxford; or the horror when a mother takes her life and that of her autistic child after she jumps off a suspension bridge. Once the initial furore is over, the fight for justice and change is often a battle left again to families.

Then there are the stories of heroics. This week, the media celebrates the work of Stephen Hawking, that brilliant scientist, and focuses on how this was achieved despite his ‘desperate disability’, while almost every other person living in Britain with ‘desperate disability’ goes unnoticed.

And, lastly, there are the scroungers. The supposed parasites who live off the state, rip off the state and give nothing back seen fleetingly in headlines.

Rarely, though, do I read stories I recognise – stories concerning people like my family, and all those others I meet. The everyday lives of ordinary people do not make great headlines, which is why the lives of people with special needs and their families go largely untold, unseen and unrecognised. And this is a problem.

At a recent meeting discussing “transition”, the intensely stressful period when young people move from children’s services into adult services, a third of the parents attending were in tears. They were learning there was no future for their child: no supported housing, no further education, no jobs and no support. Child services may be minimal, but adult services are almost non existent particularly for those with more moderate disabilities.

Nowhere is this reported.

And so the fact that nearly a third of those in prison have a learning disability or difficulty goes unnoticed. So too does the fact that large employers, including local authorities and charities, fail to keep records of how many people with disabilities they employ, even as they ask others to make workforce accommodations. Who talks about the fact that the vital role played by the paediatrician suddenly halts at 18, and that no one oversees adult health? And what about how the money spent on bureaucracy is continually rising, while frontline services suffer?

There are seven million carers like me in Britain, an invisible taskforce taking so much strain off the state. Did you know that carer’s allowance is set at £62.70 for a minimum 35 hour week? And if a carer earns more than £116 a week, they lose that? Does anyone write about how carers are usually on call 24 hours a day? That their days leave them broken, exhausted and beaten till they themselves are in need of care.

As a nation, we do not invite people with disabilities to our homes. We do not meet them in our workplaces. The tragedy is we do not really know them.

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And because this reality is not recounted, the pockets of good practice – which if shared would raise hope and expectations for people with special needs – go unnoticed. So local arts groups working in a truly integrative way are uncommended. But I could tell you about Access All Areas, with projects like Spinning Wheel, in which people such as my daughter are seen as a vital part of the performance. Or there are the social evenings hosted by parents at Shoot Up Hill, north London, where families gather to share a meal around a table with their adult children.

There are the cafes and the industries like Harry Specters, a wonderful chocolate company, set up by parents who otherwise could not see a future for their son or daughter. There are also employment schemes such as ProjectSEARCH, through which young people with learning difficulties spend a year working in hospitals and hopefully graduate into employment. But these are uncelebrated.

The counter-argument is that if the population becomes smarter, healthier and better looking, then what’s the problem? Very few people would choose to be thick, sick or ugly – so why wish these afflictions on others if they can be avoided?

Writing for Bloomberg, Tyler Cowan develops a deeper argument against genetic choice. Though of a broadly libertarian standpoint, he has profound doubts about the wisdom with which we’d use the coming technology:

“I don’t trust people to take so much control over the future of human nature.”

It’s not just things like propensity to disease that would be discarded or more trivial defects such as shortness of height or weakness of chin. Through genetic testing and abortion, we’re already eliminating people with Down’s Syndrome from entire populations as if they were without value – and that’s just the start of the ‘genetic cleansing’ heading our way.

Cowan’s focus is on personality types:

“If you could directly alter your kids’ genetic profile, what would you want? It’s hard to know how the social debate would turn out after years of back and forth, but I was dismayed to read one recent research paper by psychologists Rachel M. Latham and Sophie von Stumm. The descriptive title of that work, based on survey evidence, is ‘Mothers want extraversion over conscientiousness or intelligence for their children.’ Upon reflection, maybe that isn’t so surprising, because parents presumably want children who are fun to spend time with.”

Introverts might always be in the kitchen at parties, but, being thoughtful types, we do have our uses. Indeed, like Cowan, I think it’s possible you’ll miss us when we’re gone:

“Would a more extroverted human race be desirable, all things considered? I genuinely don’t know, but at the very least I am concerned. The current mix of human personalities and institutions is a delicate balance which, for all of its flaws, has allowed society to survive and progress. I’m not looking to make a big roll of the dice on this one.”

Given the choice, would every parent opt for an outgoing child? Perhaps not exclusively – but you can be sure that some of the more challenging personality traits would be all but eliminated. For instance, any trait labeled as ‘autistic’ would go out the window – so good luck recruiting the next generation of software engineers. As for tendencies that might be described as psychopathic or merely domineering, they’d be out too – and therefore the next generation of leaders.

Note that we’re not talking about a simple menu of genes that you can select or reject to produce your designer baby. Genetics is generally more complicated and inexact than that. Nevertheless, genetic engineering techniques will provide us with an ever increasing ability to shift the odds of a child turning out more one way than another. Given cultural preferences and prejudices this will bring about big shifts across whole societies – and not just biologically:

“Parents’ choices, and their eventual public unveiling, may have harmful effects on social norms. What if it becomes known that a high percentage of parents opted for children with paler skin or straighter hair or a greater chance of being heterosexual? That knowledge could boost stigmas and social divisions, even with stringent anti-discrimination legislation. The parental choices could end up being seen as, in essence, the final court of public opinion.”

Will we legislate to protect some aspects of human diversity, but not others? Moreover, would such legislation be enforceable? Perhaps not:

“The techniques will be available in many different countries, and over time the more lax standards will have greater influence, if only through ‘genetic engineering tourism’…

“In China, these techniques are already about one-third as cheap as in the U.S….”

Some see designer babies as a matter of competitive necessity – in that countries that engineer their way to, say, higher average IQ scores, will overwhelm those that don’t. However, that is to assume that genetically selective societies won’t breed themselves into crippling uniformity.

Educating people to avoid such insensitivities is hardly unreasonable; but there are good ways and bad ways of doing so. Earlier this year, staff at Oxford University were advised that an example of “everyday racism” could include avoiding eye-contact when talking to someone. The university subsequently apologised after it was pointed out that this advice discriminated against autistic people who can find face-to-face communication uncomfortable.

An unfortunate one-off event? Not according to Geoffrey Miller who, in an essay for Quillette, argues that university ‘speech codes’ are making life difficult, if not impossible, for people with autism and other non-neurotypical conditions:

“Ever since the Middle Ages, universities have nurtured people with unusual brains and minds. Historically, academia was a haven for neurodiversity of all sorts. Eccentrics have been hanging out in Cambridge since 1209 and in Harvard since 1636. For centuries, these eccentricity-havens have been our time-traveling bridges from the ancient history of Western civilization to the far future of science, technology, and moral progress. Now thousands of our havens are under threat, and that’s sad and wrong, and we need to fix it.”

Miller is certainly not arguing that blatant racism or sexism should be excused in some individuals. Nor is he suggesting that people with “Asperger’s, bipolar, Tourette’s, or dozens of other personality quirks or mental ‘disorders’” are racist or sexist as a result of their neurological make-up. Rather it’s that they can find it harder to navigate the linguistic sensitivities that are now ‘policed’ with such vigour on campus:

“Here’s the problem. America’s informal ‘speech norms’, which govern what we’re allowed to say and what we’re not, were created and imposed by ‘normal’ brains, for ‘normal’ brains to obey and enforce. Formal speech codes at American universities were also written by and for the ‘neurotypical’. They assume that everyone on campus is equally capable, 100% of the time, of… Using their verbal intelligence and cultural background to understand speech codes that are intentionally vague, over-broad, and euphemistic, to discern who’s actually allowed to say what, in which contexts, using which words…”

For instance, there are good reasons why the phrase ‘person of colour’ is considered acceptable and ‘coloured person’ isn’t; but choosing the right one requires communication skills that not everyone has in equal measure.

As speech codes become ever more complicated and the number of people you can offend multiplies, avoiding transgression becomes increasing difficult. That might not matter if the worst that could happen is that you’re taken aside for a ‘quiet word’. But as demonstrated by the cases of Matt Taylor or Tim Hunt, the worst that could happen includes a media witch-hunt, public humiliation or even the loss of your job.

Beyond the headline cases, Miller says there is a wider “chilling effect” on campus life:

“…neurodiverse academics may withdraw from the social and intellectual life of the university. They may avoid lab group meetings, post-colloquium dinners, faculty parties, and conferences, where any tipsy comment, if overheard by anyone with a propensity for moralistic outrage, could threaten their reputation and career…

“This withdrawal from the university’s ‘life of the mind’ is especially heart-breaking to the neurodiverse, who often can’t stand small talk, and whose only real social connections come through vigorous debate about dangerous ideas with their intellectual equals. Speech codes don’t just censor their words; they also decimate their relationships, collaborations, and social networks.”

Great job everybody!

(That’s sarcasm by the way).

(And irony).