Disability, Chronic Illness and COVID-19 by Bernadette Meaden

When I wrote about illness, disability and caring, I had never even heard of COVID-19, but the issues raised remain fundamentally the same – indeed they have been thrown into sharp relief and given added urgency by the extreme circumstances of the pandemic. Whether our experience of the virus and lockdown will lead to improvements on those issues, or make matters worse, remains to be seen.

Initially, some of the signs have not been good. The long-held fears of many disabled people, that their lives were not considered as valuable as others, have been confirmed in subtle, and not-so- subtle ways. At one end of the spectrum, the public reassurances that, unless you were elderly, ‘only people with underlying health conditions’ would die of COVID-19, made people with underlying health conditions feel that their death would be regrettable, but somehow more acceptable.

At the other end of the spectrum, while the government was criticised by some people for being slow to announce a lockdown, it was disturbingly quick to produce and rush through Parliament the Coronavirus Act, legislation which removes important rights and protections from disabled people. Also disturbingly, the Health ServiceJournal reported “‘unprecedented’ numbers of DNR orders for learning disabilities patients”. Add to this the transfer of hospital patients into residential care homes without testing for the virus, with the inevitable and surely predictable surge of deaths, and it has sometimes seemed that, far from being protected, the people most vulnerable to COVID-19 have often been left to bear the brunt of it.

Perhaps one area in which the shared experience of the pandemic could lead to positive developments is that of social security. Suddenly, almost overnight, millions of people faced the prospect of their income disappearing or being greatly reduced. In an apparent admission that no one could seriously be expected to live on Universal Credit, the government temporarily increased it by £20 per week – but pointedly did not extend this increase to people on disability benefits. Over a hundred organisations are now backing a petition to end this discrimination.

One can only hope that now so many more people have encountered what remains of our social security system after a decade of destructive ‘reforms’, they will be less susceptible to the ‘scroungers’ propaganda of recent years, and more open to ideas like a Universal Basic Income, or the Basic Income Plus devised by Dr Simon Duffy of the Centre for Welfare Reform.

One could also hope that the experience of lockdown, with its isolation, limitations and frustrations, may have allowed some people to understand that for many people with a disability or chronic illness, this is what life is like all the time. Some of the adaptations to lockdown, like working from home and online meetings or church services, are things which disabled people have long asked for but often been told were too difficult or not practical. Suddenly, they became possible, in a matter of weeks or even days. If we are to Build Back Better, the process of making society more accessible must continue – and disabled people must be involved in every decision.  

We have also seen a growing appreciation of the skill and sheer hard work involved in being a carer, and the shamefully low pay and poor working conditions of those who do these essential, and now risky, jobs. Sadly, this new understanding has not yet extended to include unpaid family carers, who have struggled on behind closed doors, often under additional pressure as services they may once have relied on for support shut down.

What seems undeniable now is that we cannot leave care homes to be treated as investments bought and soldby hedge funds.  We can’t leave social care (for people of any age) to remain a disorganised jumble of public and private provision, difficult to access or navigate, often exploiting its workforce, and too atomised to meet a crisis in a co-ordinated manner. Alongside, or as part of the NHS, we need a properly funded National Care Service, so that at every stage of their life people receive whatever care they need, in a seamless and straightforward manner. Such a service would offer fair pay and conditions to its workers, who would be recognised as a respected profession. And Carers’ Allowance, for those who care for a family member in their own home, should be raised to a level which ensures they are not impoverished for doing so.

Far from being a leveller, the virus has also highlighted our terrible inequalities, with the lowest paid workers often taking the greatest risks, either out of dedication to duty, or because extreme financial insecurity means that too many people feel they have no choice. It is extremely sad, but not at all surprising, that the official figures now show that people who live in deprived areas are dying at twice the rate of those in affluent areas. 

The truth is that our interdependence has never been clearer. Our health, and maybe even our life, depends on the health and security of our neighbours. If we are to Build Back Better, we must Build Back Better for all of us, without exception.

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Each day, we will post a short article by one of Darton, Longman and Todd’s amazing authors, offering a personal reflection on our current situation in life. Sometimes this will be written with reference to one of their books, and sometimes about how they are living in response to the coronavirus and our current world situation. We hope it will give you a taste of the depth and diversity of DLT’s list – books for heart, mind and soul that aim to meet the needs and interests of all.

 

Today’s post is by Bernadette Meaden, whose new book How the Bible Can Help Us Understand Illness, Disability and Caring will be published next week as an eBook, and later in the summer in print format. You can order a copy here.