In this article, we set about to critically explore disablist and worrying rhetoric which accompanies UK policy response that has, in our new favourite government buzz word, “ramped up” unabated during the Covid 19 situation. We explore the emergent discourses which, we argue, have barely concealed underpinning eugenic ideas. It is thus worryingly apparent that the government views not all citizens as human, but rather that some (those who are elderly or who have underlying health issues and disabilities) are expendable in the fight against Covid 19. We note, in England, unopposed changes to significant disability legislation, namely the Care Act (2014), Children and Families Act (2014) and Mental Health Act (2007) and argue that social workers (and other comparator professions) should join with experts by experience, disabled people themselves, carers and parents in raising concerns about that the hard-fought provisions enshrined in disability legislation, are being eroded at pace.
Covid the Great leveller?
As the journalist Emily Maitlis pointed out, on the BBC programme Newsnight, Covid 19, is not the ‘great leveller’ and will affect some groups significantly more than others. The evidence is strongly emerging therefore that some groups are indeed affected more than others by Covid 19, either directly or indirectly. Those who are older or have complex health issues, those living in care homes, those living in poverty and people from Black Ethnic and Minority backgrounds are disproportionately impacted and are at greater risk of contracting and dying from the virus (ONS, 2020). For us, this has profound personal and professional implications, made acute by changes to disability legislation as well as the worrying public discourse that has resurfaced, about disability, old age and eugenics. The London borough of Newham where we both work, has been the worst hit London borough for Covid 19, with 144 deaths per hundred thousand people, whose population has 78% from ethnic minority backgrounds and where half the children live in poverty (Mohdin, 2020). Of course, the issue about the disproportionate numbers of people from black and ethnic minority communities dying from Covid is also extremely concerning and deserves a more thorough exploration. We now return however, to the issue of disability and ill health
Herd Immunity and Underlying Health Conditions
The initial policy of ‘herd immunity’ encouraged us to take the virus ‘on the chin’ at the expense of older members of the population or those who had compromised health. Frey (2020) suggests that herd immunity is a form of ‘neo-liberal epidemiology’ explaining that the belief in the ‘inherent justice of the market’ had led to this idea which puts profit before people and perpetuates an individualised view of poverty and ill health, rather than focusing on structural inequalities.
NICE guidance gave a ‘frailty score’ to help healthcare teams decide on admissions to Critical Care units in hospitals (NICE 2020). Initially, this advised that those people scoring over a ‘5’, who have lifelong health conditions and disabilities, would not be admitted. Thankfully, this has since been challenged by campaigners and NICE has issued a subsequent statement, retracting from their initial guidance.
We would argue however, that the damage has been done and there remain concerns about whether some groups of people will even be admitted to hospital; i.e. the elderly and those with significant pre-existing health conditions, and who might, or might not, receive treatment. Indeed, John Chisholm, chair of the British Medical Association (BMA) ethics committee suggested that decisions about who should receive treatment should:
Chisholm further points out that so called clinical objectives standards “can be indirectly discriminatory” and “may statistically prioritize the younger [patient] and, where clinically relevant, it may discriminate against those with underlying health conditions”.
Furthermore, there have been reports of GPs sending out ‘Do Not Resuscitate’ letters to be signed by families of people with learning difficulties, as well as those living with complex health conditions. People living in care homes and in the community have felt forgotten, and in fact until recently did not even figure in the daily death count in England, as the Rightful Lives campaign film has suggested ‘to be counted you have to count’ (Rightful Lives, 2020).
Another key issue has been the lack of PPE for front line workers both in the NHS but also for those working in the community. For some disabled people this has meant having to take very difficult decisions about whether to continue living independently with carers, potentially putting them at risk of infection, or relying on family or other voluntary support to meet their needs which may also come with risks. There is also the concern, that for many disabled people, having fought so hard to have their needs met by the state, this might be withdrawn under new emergency legislation.
Current discussions about the end of lockdown return to school and work again appear to ignore the sector of the population who are disabled. Matt Hancock has reassured older people that they have not been forgotten about or discriminated against if they need continue to be shielded when the Lockdown is lifted. But what about disabled adults and children, and their families who are supporting them? As Frances Ryan (2020 points out ‘The idea that poverty, isolation or even early death is somehow natural for disabled people is still worryingly prevalent’.
We would argue that this highlights the ableism prevalent in the beliefs and practices of society that as Fiona Campbell explains ‘produces a particular kind of self and body (the corporeal standard) that is projected as the perfect, species-typical and therefore essential and fully human. Disability then, is cast as a diminished state of being human.’ (Campbell 2009, pp;44). Moreover, recent reports that the weekly figure of deaths of people with learning difficulties or autism from suspected or confirmed Covid 19 should not be included in the death count but rather be reported in the annual Leder Report has further compounded this exclusivity of being human (Thomas, 2020)
We acknowledge of course that medical professionals have always had to make difficult decisions about who would benefit from treatment and there have long been resource constraints within the NHS, particularly with austerity. The Covid19 pandemic however, has brought these issues sharply, and very starkly to the fore. Covid 19 therefore, has metaphorically, shone a very bright light on troublesome issues – much of which the public has not had to confront with such clarity and brightness, and ageist and disablist views, once barely concealed, are flourishing.
Emergency legislation that was rushed through parliament in late March, which introduced the Corona Virus Act (2020), will have significant implications for all disabled people and those with SEND. The Care Act (2014) emergency amendments (contained within the Coronavirus Act 2020), have reduced the duty of care by local authorities. The implications of which could include lack of assessment and the provision of resources for disabled people, especially those going through Transition to Adulthood. At the time of writing, at least 5 local authorities in England, have already announced ‘easements’ they will be making to social care, enabled by this emergency legislation (Hill, 2020). Furthermore, rather than having a duty to provide Special Educational Needs and Disability provision in Education Health and Care plans, as contained with the Children and Families Act (2014), local authorities reduced the duty to show they have made ‘reasonable endeavours’ to do so.
We reflect here whether there has been anything positive that has come or will come out of this pandemic. The emergence of Mutual Aid groups in local communities, and neighbours and friends supporting each other may be something we would not have anticipated for such a prolonged period. Although acknowledging the many challenges for disabled people at this time, Ryan (2020) notes that now that everyone is isolated at home, as many disabled people have been for years, there have been improvements in opportunities to enjoy otherwise exclusive leisure activities such as viewings from the National Theatre or The Royal Opera House, as well as virtual visits to a range of museums. Perhaps a sad indictment that it has taken a global pandemic to think about the needs of people who are socially isolated and who usually remain invisible within popular narratives. Being able to connect virtually with others has been struggle for many of us who are used to physically going into work, but in this environment, it is disabled people who often have the expertise and experience of organising online meetings and events.
We note recent challenges to governmental policy, such as the Care Act (2014) easements, for example legal action has been initiated against Derbyshire County Council. An uncomfortable light has been shone on an array of social issues (for example domestic violence, children at risk of harm from caregivers, education inequality and zero hour contracts to name a few). This provides a strange opportunity and impetus for social workers and other care professionals, alongside experts by experience to resist and fight against governmental disablist and ageist narratives, and the justification of 1000s of deaths. How do social workers therefore, manage the ethical dilemmas and tensions thrown up by emergency changes to disability legislation? Where is the social work leadership that is so urgently needed right now? Where is the social work voice and perspectives on News programmes? How do social workers continue to fight for and promote the rights of a range of people, our government deem sacrificial in this pandemic? Most importantly, the voices of those most affected, must be raised above the disablist, and ageist rhetoric. The implications for social workers and other care professionals, is stark, we need to use this strange opportunity to push back and “ramp up” alternative rhetoric that challenges such widespread disablist and ageist perspectives.
Dr Janet Hoskin, Senior Lecturer in Special Education, University of East London
Dr Jo Finch, Reader in Social Work, University of East London