On the pandemic and disabled people

March 16, 2020

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by Bob Williams-Findlay

Disabled members of Left Unity are aware that across the communities of disabled people there are increasing numbers voicing their anger and frustration at the apparent disregard for the needs and interests of Disabled people of all ages by the Johnson government during the current pandemic. The lack of regard for the needs and interests of disabled people is recognised as being a systemic issue. In the Forward to the Independent Living for the Future report produced by Reclaiming Our Futures Alliance (ROFA), they wrote:

So long as we live under a system that puts profit before people, we will need to struggle to secure the resources required to support Disabled people to access the same rights and opportunities as non-Disabled people. That struggle will take different forms at different times depending upon the attacks we find ourselves facing and the reforms we consider most urgently needed under particular circumstances.

At this particular moment in time the support required by Disabled people to access the same rights and opportunities as non-Disabled people is absent as a direct result of the government’s inability and failure to address the medical, social and political issues that have arisen due to the COVID-19 pandemic. Left Unity Disabled members are working within ROFA to raise the concerns of Disabled people about the lack of government advice about COVID-19 for Disabled people of all ages who require social care or independent living support for their daily living arrangements and the workforce, families and friends involved providing these arrangements.

The complacency of the government has led to growing fear and anxiety among Disabled people of all ages, who as a result of pre-existing medical conditions or the ageing process, are seen as being most at risk during the current pandemic. This situation has not been assisted by a decade of Austerity with a reduction within or the privatisation of services, an acute and largely ignored crisis within social care and the utter contempt successive governments have shown for Disabled people’s representative bodies. In addition, when Disabled people are not treated as invisible or simply disregarded, we have witness them being subjected to the distorted stereotyping of their lifestyles and having the dangerous and inappropriate label “vulnerable” attached to them. Disabled people of all ages are at risk during this pandemic, but what creates their vulnerability is not who or what they are; it is the failure to put in place appropriate advice, support and resources. What this current pandemic shows is there is no infrastructure in place at national, regional or local levels to support groups of people who are potentially at risk. Community based support ought to have been a priority from the first day of recognition that a crisis situation was on its way.

Medical Issues

LU Disabled Members believe the overarching Public Health England advice, for example, on self-isolating is woefully inadequate because it sidesteps the complexities involved in the lifestyles of Disabled people of all ages. Many Disabled people would find self-isolating both difficult and highly dangerous; many are already isolated or struggle with barriers which could do additional harm if they cannot shop or receive adequate medical or social support. Low income, stockpiling of food, hygiene products and medicine all have serious implications for Disabled people’s health needs. Little attention has been paid to the implications behind the advice given to care staff or personal assistants that, “a risk assessment should carry out before they visit a person who is and ascertain if they are symptomatic.” What if they are; stating a face to face visit should not take place, and the person should be left in their room with the door closed, and then a 111 call made does not address what could or should happen next. What is meant to happen while waiting for a COVID-19 test? It is unrealistic and highly questionable to expect people to be hospitalised; it would violate human rights to abandon people, so how would their support needs be met? There is no indication what would happen to the person if they are found to be positive but not critically ill. LU Disabled members been informed that advice on how care agencies and residential establishments is forthcoming, but we remain unconvinced that either adequate advice or support will be given to people reliant on direct payments so that they can ensure they have a sufficient workforce to undertake the necessary care. We support the demand that any guidance on how to continue to provide care and support aimed at care workers, should also give due consideration to personal assistants, family and friends. Ideally, we would want to see local authorities co-produce with Disabled people’s organisations contingency plans for safeguarding Disabled people who may at risk of not receiving the care and support they need as a result of COVID-19 or any future emergency. In our opinion there has been a failure to discuss the issuing and training in the use of Personal Protection Equipment (PPE) relevant to infection control to carers organisations.

Social issues

Left Unity Disabled members take a social approach towards disablement whereby we see the structures, systems and organisation of society as maintaining the restrictions which exclude or marginalise Disabled people. For many Disabled people our lifestyles are impacted upon by various forms of disabling barriers at the best of times however the pandemic is likely to compound the situation. Adapting our lifestyles is never easy and inadequate information and unrealistic expectations could result in increased isolation. Disabled people of all ages will face uncertainty over the next few months and the advice to limit human contact puts people at greater risk. Recruiting support is always difficult, but with the possibilities of staff contracting the virus, We are concerned that little or no attention is being paid to Disabled people’s lifestyles, be that a disabled child who may have infected parents, through to the older disabled individual without a phone, internet, television, radio or ability to obtain shopping. If the risk is face-to-face fifteen minute interaction, how could that be mitigated against to ensure Disabled people have adequate support? We believe local authorities where possible should work with Disabled people’s organisations to set up a hotline for those in receipt of direct payments to monitor their ability to continue to access the support they need. Similarly, an urgent investigation is needed into what kind of alternative forms of accommodation and support could be arranged when it becomes impossible for people to be cared for in their own homes but do not need hospital care.

Political issues

Our Disabled members work within the tradition of the Disabled People’s Movement and support the slogan, “Nothing About Us, Without Us”, as it represents the desire to take control and responsibility of our lives and to collectively work together for betterment. Inclusive praxis and the transformation. The current crisis however clearly demonstrates how little power and consideration is given to Disabled people of all ages. We feel we are being made invisible or symbolically placed in a black bin liner with the label “vulnerable” tagged to it. We wish to add our voices to the anger and frustration being expressed because we know all too well the history of Disabled people which is a history of abuse, neglect, oppression and murder via euthanasia. Within the discussions around COVID – 19, we have already heard eugenic sounding rhetoric from medical professionals and others. The notion of ‘herd immunity’ fits into a eugenics narrative as well. The Prime Minister’s advisor, Dominic Cummings, is associated with Social Darwinism and Eugenics and is on record as saying how economically and socially useful a pandemic such as COVID – 19 could be in terms of ‘burdens on society’,

In case we forget, in 1920 long before the Nazis took power, Binding and Hoche, when speaking of those with impairments, and explicitly advocating involuntary euthanasia, wrote:

‘Their life is absolutely pointless, but they do not regard it as being unbearable. They are a terrible, heavy burden upon their relatives and society as a whole. Their death would not create even the smallest gap — except perhaps in the feelings of their mothers or loyal nurses.’

Allowing the destruction of life unworthy of life

LU Disabled members know that history does not repeat itself exactly, and we are conscious that the pandemic will result in untimely deaths, but the words spoken by Prime Minister Johnston were heard differently by Disabled people who already believe they are disregarded by the present government. We are stating our position on the pandemic COVID – 19 because we believe Disabled people should be neither silenced nor ignored.