A very deadly inequality

Published by The i paper (6th July, 2020)

The investment guru Warren Buffet famously said that only when the tide goes out do you see who has been swimming naked. He was referring to how a recession exposes businesses in bad shape, but his pithy quote applies equally well to the waves caused by pandemic. The traumatic events of recent months have revealed many fault lines in our society, ranging from the ineptitude of populist politicians through to the reliance on low-paid, often migrant, workers in crucial sectors. Most disturbingly, this pandemic proves again how little this country cares about people with disabilities. 

Sadly, this is no surprise: look at the poverty statistics, employment data or how an impassioned diversity debate ignores the most disempowered minority. Britain remains a place that locks up, abuses and forcibly drugs many people simply because they have autism or learning disabilities. Yet I was still shocked by the thunderous silence that greeted the latest distressing figures released by the Office for National Statistics. These showed about two-thirds of fatalities from this disease during its peak from start of March to mid-May were people with disabilities. That is more than 22,000 deaths.

Pause for a moment and let that huge number sink in.

Then dig down into the data. It indicates women under 65 with disabilities – like my own daughter – are more than 11 times more likely to die than fellow citizens, while for men the rate is more than six times higher. Even for older people the number of deaths was three times as high for women and twice as high for men. There are some explanations for such alarming figures, although they tend to reveal other profound concerns. People with disabilities, for instance, are more likely to live in poverty or suffer from health conditions such as diabetes or obesity that leave them vulnerable from the virus. Many cannot isolate themselves due to a need for support.

Yet the report showed even when issues such as economic status and deprivation are taken into account, people with disabilities died at about twice the rate of their peers. So where was the fury over this obvious and deep inequality, even in death? Where was the fierce outcry over persistent failures that left many citizens and their families at risk, lacking even the most basic advice, support or protection from the state? Where was the concern that even this partial data had to be dragged from the authorities? Above all, where were the howls of anger and protest that all lives should matter in our society?

Yet even these figures merely scratch the surface. They only include people who declared themselves disabled in the 2011 census so exclude those born after this date and, more significantly, anyone who became disabled in the past nine years. They also ignore many people with autism and learning disabilities, who once again found themselves at the very bottom of all official priorities in this pandemic.

Bear in mind at start of the pandemic those nefarious attempts to impose “Do not resuscitate” orders on people with learning disabilities and dump them down the priority list if hospitals became overwhelmed. Since then, the applauded National Health Service has done its best to pretend there is no problem. In May it issued a complacent statement to claim death rates among people with learning disabilities and autism were “broadly in line” with the rest of the population. Full figures are not due until next year. The message was clear: no need for fuss, move along folks.

This seemed strange. We know people with conditions such as Down’s Syndrome often suffer respiratory problems. One Dutch study found mortality rates three times higher among people with learning disabilities than the general population during a recent flu epidemic. The NHS figures include only confirmed cases of Covid-19 who died in hospital, which ensures it can share information about age, gender, ethnicity and several other underlying conditions. But it does not disclose details on people with autism or learning disabilities.

This shows a callous lack of concern, given the desperate need to know which particular groups might be most at risk. Chris Hatton, the dedicated professor of public health and disability at Lancaster University, delved into all available data. He found people with autism and learning disabilities were in reality at least four times more likely to die at the peak of pandemic than other citizens. They also died at far younger ages. “Information released about deaths of autistic people and people with learning disabilities has been minimal, grudging and seems deliberately designed to be inaccessible,” he says rightly.

This adds up to one more shameful episode in the scandal of how Britain treats such citizens. Note how the social care debate, even with sudden focus on care homes in a pandemic, focuses on elderly residents and how swiftly councils were freed to ditch support responsibilities. We knew people with learning disabilities are four times more likely to die than others of similar age and sex even before this crisis. We knew also many die due to indifference – with an estimated 1,200 needless fatalities a year in the sanctified NHS.

This deadly inequality was confirmed by the Learning Disabilities Mortality Review, which offers the best, if still woefully incomplete, data on the pandemic’s impact. The review was set up after Sara Ryan, an Oxford University research lead, fought for truth following the death of her teenage son Connor Sparrowhawk due to failures by Southern Health Trust. He drowned in a bath seven years ago this weekend. Now Sara and some other activists are deciding whether to take legal action against the NHS to force provision of the full picture of Covid-19 deaths. “I’m sad to be part of a society where people’s deaths can still be ignored,” she told me.

I share her sorrow as the naked truth of Britain’s enduring tragedy lies exposed again.

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