Illness, disability, caring and COVID-19

By Bernadette Meaden
May 26, 2020

When I wrote a book about illness, disability and caring I had never even heard of COVID-19. However, the issues of justice, equality and interdependence I wrote about not only remain, it feels like they have been given added urgency by the extreme circumstances of the pandemic. Whether our experience of the virus and lockdown will lead to improvements on these 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 who have underlying health conditions feel that their death would be regrettable, but somehow more acceptable.

At the other end of the spectrum, whilst the government was slow to announce a lockdown, it was disturbingly, indeed frighteningly quick to produce and rush through Parliament the Coronavirus Act, legislation which removes important rights and protections from disabled people and other groups, like children in care.  Also disturbingly, the Health Service Journal 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 seems that, far from being protected, the people most vulnerable to COVID-19 have in some cases been left to bear the brunt of it.

Perhaps one area in which the shared experience of the pandemic could possibly 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, and needed to apply for benefits. In an apparent admission that nobody 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 backed 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’ and swingeing cuts, they will be less susceptible to the ‘scroungers’ propaganda of recent years, and more aware of the poverty and stress which comes with being reliant on benefits. Perhaps they will be 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 daily life. Some of the adaptations to lockdown, like working from home and online meetings, conferences and church services, are things which disabled people have long asked for but been told were too difficult or impractical. Suddenly, they became possible, in a matter of weeks or even days. If we are to Build Back Better, this process of making society more accessible must continue – and the knowledge and expertise of disabled people must be at the forefront.  

We have also seen an increased and long-overdue 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 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 residential care homes to be treated as investments bought and sold by 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 get whatever support 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.

Another issue covered in the book is the health inequality which means poor people die younger and have far fewer years of healthy life than their wealthier neighbours. It is extremely sad, but not at all surprising, that the official figures have shown that people who live in deprived areas are dying of COVID-19 at twice the rate of those in affluent areas.  When the lessons of the pandemic are being learned, these issues of economic, racial and social injustice must be very high on the agenda.

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

* How the Bible can help us understand: Illness, Disability and Caring is published by Darton, Longman and Todd. It is available to pre-order as an eBook (released 29 May, £4) and as a paperback (released 27 August, £7.99) here


© Bernadette Meaden has written about political, religious and social issues for some years, and is strongly influenced by Christian Socialism, liberation theology and the Catholic Worker movement. She is an Ekklesia associate and regular contributor. You can follow her on Twitter: @BernaMeaden 





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