‘Only the vulnerable will be at risk… but your ‘only’ is my everything’
The quote in the title above is from a parent talking about her disabled daughter, who lives with life-threatening impairments, in the face of early public health messages that only the elderly and those with existing health conditions are most at risk of serious illness, and possibly death, from coronavirus – also known as COVID 19. Notably, such sentiments have consistently underpinned the majority of media reporting and government communication in our current time of the COVID 19 global pandemic. Such ontologically violent messages have sought to reassure an overwhelmingly anxious public at the expense and distress of some of the most vulnerable. These sentiments also shore up the everyday mundanity of dis/ableism – which I define below – social and cultural forces that actively sequester away why we culturally view vulnerability and human value in such ways in the first place.
The voices and experiences of disabled children and young people living with life-limiting and life-threatening impairments and their families are where I begin this blogpost because they sit at the very centre of our ESRC-funded project, Living Life to the Fullest. Throughout the project, disabled children and young people living precarious lives and shortened life expectancies have readily emphasised their human worth, value, and desire for the future – regardless of how long these futures might be. They have done so in disabling cultures that routinely deny them opportunity, access, and expectation. Ultimately, the aim of the project has been to highlight disabled young people’s own stories of social and political injustice at the same time as supporting the development of their counter narratives: affirmative stories that depathologise the lives of disabled children and young people and acknowledge disability life as meaningful, joyful, valued and cherished.
If you don’t know, ableism can be understood as the material, cultural and political privileging of ability, sanity, rationality, physicality and cognition (Braidotti 2013; Goodley 2014); while disablism refers to the resultant oppressive treatment of disabled people (Slater and Liddiard 2017). Disablism and ableism are often dual processes: more often than not, they work in conjunction, supporting one another (Liddiard 2018). Without doubt, we are living in deeply disablist and ableist times – even before the threat of a global pandemic. Ableism and disablism are ever present within contemporary society, where neoliberal and scientific rationalist ideologies are thriving and, currently, where global capitalism and global austerity – and now a global pandemic – are routinely highlighting the costs and therefore undermining the (human) value of disabled people.
But to speak in a more general sense, disablism and ableism have long rendered disability as abject and Other. Disabled bodies and minds are actively sequestered from public view, space and culture: segregated in education; institutionalised in hospitals, homes and treatment units; detained in mental health units; criminalised in prisons; lost through child protection systems; and excluded from the popular cultures of perfection which dominate a globalised techno-media age (see Hevey 1992). As such, disabled people have seldom ever been considered, nor treated, as ‘fully human’ (Goodley, Lawthom and Runswick-Cole 2014b). An ableist imperative deems impaired bodies and minds subsist predominantly as of lesser value and, as such, subject to a very different set of priorities than those considered ‘able’ (Liddiard 2018). It is these differences that are the subject of this blog post, where I unpack the everyday lived realities of dis/ableism in the current COVID 19 crisis for disabled and marginalised others. I ask: Where do ableism and disablism show up? Where do they determine the gravest threats to disabled people and their families? And lastly, why should we care?
Let’s start with herd immunity
Herd immunity is the concept of allowing publics to be exposed to a virus, in the hope that spreading it among those who are at low risk means that a large part of the population becomes immune. It was a strategy advocated by Boris Johnson just two weeks ago. Yet noticeably, he has since socially distanced himself from it (no pun intended…) after it was strongly refuted by the World Health Organisation (WHO) and Imperial College epidemiologists and virologists who demarcated it as risky, strikingly unscientific and that which only leads to higher death rates. Frey (2020; np) has argued that herd immunity is a form of epidemiological neoliberalism:
‘…herd immunity relies on the assumption that an epidemic is best overcome by leaving it unregulated. But just like neoliberalism, it results in violence against the weak and the poor: elderly and disabled people, homeless people, refugees and people with severe health conditions – many of whom are likely to also have a lower socio-economic status because of the correlation between poverty and illness.’
Frey (2020) also draws our attention to the problematics of “flattening the curve” – the idea that taking particular interventions at particular times mediates stress on struggling health systems. Yet, neoliberal policy-making has allowed health services to be chronically underfunded in the UK for over a decade. As a result, Britain has an already-low capacity to provide critical care (one of the lowest in Europe) that wouldn’t suffice ‘even with strict lockdown measures’ (Frey 2020; np). Ultimately, we are too late – healthcare would have to have been funded properly, and ethically, years prior to a pandemic to be sufficient. Playing into neoliberalism’s “blame game” – that in a free market if you’re poor, unemployed, and vulnerable that it’s ultimately your fault – means that governments place the ‘failure of the health system on the virus, rather than on bad governance’ (Frey 2020; np).
The proposed Coronavirus Bill
We can also see dis/ableism embedded in the UK’s proposed Coronavirus Bill, which sets out the sudden removal of disabled people’s (hard fought-for) rights to social care, attacking the civil liberties of disabled people and eroding their rights to support (you can read more about this here). The bill suspends every duty in the Care Act, 2014, including the duty to meet the eligible needs of disabled people (Section 18) and their carers (Section 20). Under the bill, Local Authorities will only have to provide care ‘if they consider it necessary’ for the purposes of avoiding a breach of the European Convention of Human Rights (ECHR). It’s important to state that there is no human right to social care or positive obligation under the ECHR to meet care needs (Living Life to the Fullest, 2020). And to return to the disabled young people’s lives at the centre of our project, the proposed Coronavirus Bill also aims to suspend Local Authorities’ duties for young people transitioning to adult social care. Parents of disabled children and young people we have spoken to in the project already stress the significant problems with transition; to remove obligations to support young people and their families is unimaginable and deeply impactful to their futures, and their access to their needs and their rights.
Moreover, the Secretary of State for Education will have power to disapply the duty on schools and other institutions to admit a child to a school where they are named on an Education, Health and Care Plan (EHCP). Effectively, the Secretary of State will be able to vary provisions of the act, such as the core duty to procure provision set out in an EHCP, so instead of being an absolute duty it becomes a ‘reasonable endeavours’ duty, creating a lesser entitlement for disabled children and young people for up to two years (Living Life to the Fullest, 2020). Such interventions may, to some, sound logical and understandable in the context of a global pandemic where (scarce) resources are needing to be ‘put to best use’ and Local Authorities advocate that they need flexibility and autonomy in governing funding. But we must ask critical questions as to the extent to which such responses are proportionate, necessary and ideologically driven. We also need an urgent review – and amendments tabled – as to the material impacts this has on disabled people and their families now. We must shout. One area of concern is that the powers detailed under the bill, as published, remain in force for two years, but after oppositional pressure from Labour and others (who listened to disabled people’s protestations), the government has agreed an amendment mandating a review of the measures every six months.
Which of us will get lifesaving treatment and which of us will not?
We also see dis/ableism – and the disposability of disabled and vulnerable lives – most clearly in talk, and now emergency policy, around access to health resources. A lack of resources – the numbers of critical care beds; access to ventilators; and the time and focus of medical staff – means making rational and sensible decisions about distribution. In short, which of us will get lifesaving treatment and which of us will not? Let’s be clear, such decisions are already an everyday part of healthcare, but they are typically embedded in ethics committees, multidisciplinary teams, and in consultation with patients and their families. COVID 19 means that nation states are rushing in urgent updates to existing processes. A person’s age, existing health and comorbidities – and more worryingly their ‘social usefulness’ (for example, a nurse who could go on to treat others has priority over others) – are underpinning access to resources where health systems are quickly becoming incapacitated. As Kukla (2020; np) states, ‘this is not an unusual triage decision to make in wartime or pandemics; our lives are considered, quite literally, more disposable’.
For example, the Italian College of Anesthesia, Analgesia, Resuscitation and Intensive Care has drawn up guidelines for who receives treatment, controversially rationing resources by age. The US is in the process of updating its guidance for health and care practitioners and those involved in planning and delivering services. To give a couple of examples – as identified by Ne’eman (2020; np.) in the New York Times – ‘the state of Alabama has decided that people with severe or profound intellectual disability “are unlikely candidates for ventilator support” and Tennessee has listed “people with spinal muscular atrophy who need assistance with activities of daily living among those excluded from critical care”. In response, on 18th March 2020 the American Association of People with Disabilities (AAPD) wrote to congress, asking for a ‘prohibition on disability discrimination in the rationing of scarce medical resources’ (Town, 2020). Perplexingly, Italian guidelines prioritise those who have the highest likelihood of survival and who ‘could enjoy the largest number of life-years saved’ [emphasis added]. It goes without saying that we must also question the deeply ableist assumptions that inevitably underpin notions of ‘enjoyment of life’.
And in the UK, new NICE guidelines announced on Friday (20th March; NG 159) bring together existing national and international guidance and policies and advice from specialists working in the NHS from across the UK. These new NICE guidelines state that on admission to hospital, medical professionals will assess all adults for frailty (irrespective of age and COVID‑19 status); consider comorbidities and underlying health conditions; and use the Clinical Frailty Scale (CFS) – originally developed for dementia – for frailty assessment. They will then record the frailty assessment in the patient’s medical record (1.1 NICE Guidelines, March 2020). In order to decide admission to critical care, new NICE guidelines advocate discussion of ‘the risks, benefits and possible likely outcomes of the different treatment options with patients, families and carers using decision support tools (where available) so that they can make informed decisions about their treatment wherever possible’ (2.1 NICE Guidelines, March 2020). We must question the feasibility of this in chaotic hospital departments that are under-resourced, under-staffed and overwhelmed by the sheer numbers of people needing life saving support.
Measuring human worth and value
Furthermore, the Clinical Frailty Scale is a deeply troubling measurement of human worth and value. Yet NICE places it at the centre of admission to critical care in the current pandemic. In short, a score of 5 or below makes you more likely to access critical care, while a score of 6 or above makes this less likely. Medical professionals must ‘take into account the impact of underlying pathologies, comorbidities and severity of acute illness on the likelihood of critical care treatment achieving the desired outcome’ (2.2 NICE Guidelines, March 2020). I want to be clear here, and state that this is by no means a criticism of medical professionals and hospital staff who are on the frontlines doing incredible work in an unimaginable and unprecedented situation. These are professionals readily sacrificing their own health, without proper support from the UK government in the form of access to COVID 19 testing and the personal protective equipment (PPE) needed to keep them safe in their vital work of saving others. Without doubt, this is also a deep injustice.
But, my point here is to make visible the inherent ableism that determines whether someone lives or dies based on the support they require in everyday life. For example, how did we get to the point where ‘frailty’ that ‘impairs shopping, walking outside alone, meal preparation and housework’ (#5 CFS) is integral to human value? And where those who ‘often have problems with stairs and need help with bathing and might need minimal assistance with dressing’ (#6 CFS) have less of a right to survival than those who are deemed ‘robust, active, energetic and motivated’ (#1 CFS)? We must also include learning disabled people here, too – that someone who is physically well, but who needs support for daily living, is also subject to these troubling and crude judgements about the quality and worthiness of human life. In his recent blog post, Hatton (2020) discusses the potential implications for people with learning disabilities if they get COVID-19 and need to go to hospital. He argues that ‘there is really no evidence that any frailty measure is applicable to adults across the age range, including people with learning disabilities’ and that ‘the consequences of the blanket application of a frailty measure in these circumstances for people with learning disabilities worry me greatly’:
‘For example, on this scale I think anyone with profound and multiple learning disabilities would at best be rated 7 (Severely Frail) on this scale. And perhaps pretty much any adult with learning disabilities who has jumped the eligibility hurdle for long-term adult social care support (around 150,000 people in England alone) – and maybe all children with severe or profound multiple learning difficulties with an EHCP (around 40,000 children in England) – would be rated at best as 5 (Mildly Frail).
Hatton (2020; np) also makes the point that, for learning disabled people, who may enter hospital without support (for example a family member or carer who isn’t allowed to be with them), such discussions are likely to be inaccessible, and thus people are at further risk when ‘acquiescent to suggestions put to them by health professionals in a position of authority at a time of great stress’. To once again evidence that this current situation is constant flux, just two hours after this paragraph was written – again due to the protestations of disabled people – NICE updated their COVID 19 guidelines to stress that people with “stable” impairments like Cerebral Palsy and people with learning disabilities and/or autism would not be measured by the CFS upon entering hospital. You can read about these developments here. Such hurried updates once again emphasise the dangers of speed when applying scales of human value in such uncertain times.
To conclude, this blogpost has been written in a purposeful haste, to ensure that sociological and critical disability studies’ critiques are responsive and emergent in this uncertain time. Activist scholarship and public sociology (Burowoy 2013) are always valuable, but become critical in precarious times; a form of legitimate social action. Inevitably, then, there is plenty more to say, particularly where governmental responses to the pandemic are changing by the day. But I want to end by stressing my sadness that, as a disabled person, yet again, disabled people, our allies, and communities need to take urgent action to humanise ourselves and our lives, particularly with and for those deemed the most vulnerable amongst us. We must emphasise that we are valuable and valued human beings. That we have meaningful lives worth protecting and saving. That we are at risk as much from disablism and ableism as we are COVID 19. And that being vulnerable does not equate with being less than human. That the patient who scored above #6 on the Clinical Frailty Scale is someone’s child, mother, father, sibling, lover, employer, neighbour, friend and/or carer; possibly yours. That, ultimately, ableism – both inside and outside the precarious context of crisis – readily dehumanises and demarcates our lives as disposable.
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Town, M. (2020) Letter to Congress. March 18, 2020: https://www.aapd.com/wp-content/uploads/2020/03/COVID-19-Response-Package.pdf