Human disposability in England
by Katherine Runswick-Cole, Dan Goodley and Kirsty Liddiard
In England, in the midst of the COVID-19 pandemic disabled people are already at risk of being denied critical life saving care (NICE, 2020). Human disposability is now being overtly referenced in public policy discourse.
The social contract between disabled people and successive governments, that has existed for three decades, has effectively been broken by the publication of the Coronavirus Act (March, 2020) that has:
- Suspended the Care Act 2014 reducing rights to social care;
- Given the Secretary of State for Education the power to dis-apply the law in relation to provision for disabled children and young people;
- Made it easier for people to be detained under the Mental Health Act (MHA) 1983.
Before COVID-19, people with learning disabilities and/or autism were among the most disadvantaged members of society with a life expectancy 20-30 years less than their non-disabled peers. The Coronavirus Act will have an as yet unknown impact on their lives. Baroness Tanni Grey-Thompson, disability campaigner, described the Bill that preceded the Act as the ‘social care obliteration bill’. We anticipate there being many negative impacts of COVID-19 on the health, education, community inclusion, civil liberties and right to life of people with learning disabilities and/or autism.
The community response
The response from the disability community has been rapid, and, sometimes, effective. Public pressure built through engagement with social media led to the National Institute for Health and Social Care Excellence (NICE) publishing clarification in relation to the use of the Clinical Frailty Scale (CFS) (the decision-making tool used by medics to allocate critical care resources) which put disabled people’s lives at risk. In a letter to health care colleagues, the clarification made it clear that:
‘The CFS should not be used in younger people, people with stable long-term disabilities (for example, cerebral palsy) learning disability or autism. An individualised assessment is recommended in all cases where the CFS is not appropriate.’
There was also a campaign to ask Members of Parliament (MPs) to seek amendments to the Coronavirus Bill that preceded the Act, to mitigate the reductions in the statutory protections for disabled people. This campaign was unsuccessful, however, the amendment to review the Act in six months (rather than two years) was passed.
More than 1500 disabled people and allies have written to National Health Service England to set out their fears about how their lives are being valued and to demand that the rights of disabled people are upheld in the pandemic.
Disabled people and their organisations are staying in touch with one another on-line and making every effort to include people who are digitally excluded by supporting them to use online platforms.
Social research is notoriously slow at keeping up with rapid developments in everyday social life (Braidotti, 2013). We need to work analytically and responsively to make sense of the here and now of disability and COVID-19, whilst always being aware of socio-historical horizons. During this time of crisis, we will continue to draw on critical disability studies scholarship (Goodley, 2016; Liddiard, 2019 and Mallett and Runswick-Cole, 2014). We anticipate engaging with three urgent areas of scholarship:
(1) Rewriting the social contract – the Coronavirus Act has effectively re-written the social contract between disabled people and the state. As the Act is reviewed (in six months time) and is withdrawn in two years time, we will advocate for a new social contract informed by learning from our community partners as theoretical provocateurs.
(2) Re-imagining communities – social distancing has fractured existing communities but created new opportunities for connection via online platforms; we must capture these changes and to re-imagine communities post COVID-19.
(3) Re-thinking the human – the COVID-19 crisis has already raised questions of human worth. Human disposability is now being overtly referenced in public policy debates and public discourse; we must intervene in these debates and to advocate for the full humanity of people with learning disabilities and/or autism.
How we understand being ‘human’ differs between disciplines and has changed radically over time. We are living in an age marked by rapid growth in knowledge about the human body and brain, and new technologies with the potential to change them.
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