Self-advocacy in a time of COVID-19

by Professor Dan Goodley & Professor Katherine Runswick-Cole

Crook Fellows, Sunderland People First and Lucy Virgo developed a project with the aim of promoting awareness of and access to self-advocacy nationally. They worked to identify, capture and document the work of self-advocacy groups across the country through the production of an online interactive map. Access to self-advocacy has never been more important than now.  

Pre-pandemic, we already knew that people with learning disabilities are amongst the most marginalised people in society; routinely, they are excluded from schools, communities, and the workplace. Most shocking of all, people with learning disabilities are expected to live 20-30 years less than their non-disabled peers, not because of biology but because of how society categories different groups of people. We live in a society in which health and social inequalities are deeply embedded. We know that the unexpected deaths of disabled people go un-investigated. We know that, historically, the lives of disabled people have been judged as ‘not worthy of life’.

As soon as the crisis took hold, the disproportionate impact on the lives of disabled people became evident immediately. When the Coronavirus Act passed, the rights of disabled people, hard-fought over the last 30 years, were washed away, literally overnight, as rights to social care, education and civil liberties were the first casualties in the ‘war’ against the pandemic.

Being on a war footing changes things. It brings out the best in people as they volunteer to support the NHS, shop for a neighbour or organise their local community response. And disabled people’s organisations – including self-advocacy groups – have been helping communities stay connected and have shared information. But this war has brought into focus deeply embedded assumptions that determine the logic laws of an ‘intelligent’ lockdown in the context of a pandemic in which vulnerability, human value and human disposability are now overtly referenced in discussions about who will, and who will not, benefit from (limited) critical care resources.

The publication of the NICE guidelines about how the Clinical Frailty Scale should be used to guide decisions about resource allocation caused widespread panic amongst the disabled people and their families, as it could be applied in ways that would deny disabled people health care. Even when NICE clarified that the Clinical Frailty Scale should not be applied to disabled people, the community was not reassured. A publication of British Medical Association (BMA) ethical guidelines sparked further concern about how the ‘speed of recovery’ might be used to justify de-prioritising treatment of disabled people. By paying attention ‘comorbidities’ without offering any clarification of what this term means, the BMA guidelines further alarmed a community which is aware that a diagnosis of ‘learning disability' is still being used unlawfully to justify Do Not Resuscitate orders.

Campaigners are arguing for clear national guidance on treatment prioritisation during this pandemic, so that is there is no possible confusion about how resources are allocated. They argue that guidance must be developed in consultation with disabled people, their families and other allies. It must be driven by a commitment to the principles of the UN Convention on the Rights of People with Disabilities and it must begin with a clear statement that the lives of disabled people are of equal worth to the lives of non-disabled people.

The pandemic has sparked a national conversation about human vulnerability and human value, one that the Crook Fellows have been engaged with long before the pandemic. The online interactive map will continue to help to bring communities together and offer vital ways of people accessing support during the pandemic and beyond.

To see further work and reading from Professor Goodley and Professor Runswick Cole, head to the iHuman website.