By Angela Craig
‘There are some things more important than living’
The above quote, attributed to the lieutenant governor of Texas, (London Review of Books, 4 June), is simply one of the more honest statements of an attitude to human life that has prevailed in Britain and the US during the covid-19 pandemic. This attitude privileges supposed capitalist economic interests above human life in general – as seen by the slow move to a relatively light lockdown, lack of testing and tracing, economic measures for business but no plan for schools, a false narrative that the NHS was not overwhelmed when in fact responding to coronavirus depended on abandoning treatments for both life-threatening and chronic conditions, and much else. But it also differentiates between human lives: a social Darwinism that considers some human lives more expendable than others is brutally evident in the policies and statistics of the last few months.
How else to explain a reported 175 per cent increase in the number of unexpected deaths of people with learning disabilities and autism in April/May compared to the same period the previous year? Other figures in late May showed ‘that people with a learning disability are dying at double the rate than in previous years’ (Mencap) and that almost half of such notified deaths ‘were Covid-19 related – higher than the proportion of Covid-19-related deaths in care homes’.
These grim statistics are not mysterious: they are linked to political decisions by government. At the same time as disabled people and organisations were trying to draw attention to these terrible figures, people with a learning disability or autism living in a care home environment were ‘not able to access testing’ (VODG]. Government guidance to care home providers on 15 April (after much pressure) said testing would be available to those living in care homes but ‘only…if your care home looks after older people or people with dementia’. Disabled people and people with autism living in residential homes have been explicitly denied testing. The chief executive of a large umbrella organisation condemned the explicit bar to testing for learning disabled people and said ‘Every death must count…We must measure all lives lost’. But the reason that every death isn’t counted is that every life is not valued equally.
When it comes to disabled people this is evident at many levels.
The last decade has witnessed growing struggles by disabled people against being forced into institutional care. Caps on care funding, cuts at local and national level and the removal of programmes like the Independent Living Fund have faced some disabled people with incarceration in residential homes against their will. Cuts from council adult social care budgets since 2010 have forced some disabled people to choose between care support hours (which might be needed to help wash, dress, eat, to get to work) or food. As journalist Frances Ryan put it ‘The consequences are like something out of a horror show: disabled people told to wear adult nappies, put to bed at 6pm or left housebound 24/7…This is not so much a public policy issue as a full-blown humanitarian crisis.’ Government policy towards disabled people in the last decade has been strongly criticised by the UN.
These and a whole range of other attacks threaten moves towards equality for disabled people that were only very recently established. The waves of civil rights campaigns, in which disabled people built on the struggles of black activists against racism (which black disabled people were also part of), from the 1970s, the establishment of the idea of disability as a political issue and of the social model of disability in the 1980s, the subsequent creation of international and national laws against disability discrimination (in Britain, the Disability Discrimination Act was only introduced in 1995), all took place against a eugenicist history in the west that remained strong until the mid-twentieth century.
The genocidal and eugenicist crimes of Nazi Germany are well known, but eugenics was a strong element of earlier twentieth century western capitalist societies more widely. A reflection of this is that Churchill, a great hero of the current Prime Minister, advocated sterilisation and forced incarceration of the ‘feeble-minded’ in the earlier twentieth century. The Mental Deficiency Act 1913, which Churchill strongly supported, enabled forcible detention in institutions and continued in force for almost half a century.
Forcible sterilisation of disabled people remained legal in many US states until the 1950s and only in 1986 did case law in Canada establish that a disabled person’s consent was required for sterilisation surgery. Until the 1980s it remained entirely typical for many disabled children to be removed from their families and placed in institutions. This was reinforced by the non-availability of financial, educational and social support for disabled children. When, in support of rights in law, disabled people in Britain in the 1990s chained themselves to buses and railings, wore placards saying ‘piss on pity’ and demanded they be allowed to speak for themselves (‘nothing about us, without us’), they did so against a long history of being silenced, incarcerated and treated as less than human.
Today many disabled people find it necessary to fight the medical establishment and take legal action against ‘Do Not Resuscitate’ orders placed without their permission. As a previous article on this website reported, disabled people have faced ‘unprecedented’ pressure to sign DNRs as part of accessing coronavirus treatment. Such DNRs reflect quality of life decisions made by others about the value of a disabled person’s life: a judgement that no one except the person involved has the right to make. One assumption behind such actions is that the death of a disabled person is a relief from suffering rather than a tragedy to be avoided.
This cultural and political context also explains why most politically organised disabled people are hostile to proposals to legalise assisted suicide. Many parts of Europe and north America have legalised assisted suicide; voluntary euthanasia of children is now permissible in Belgium and the Netherlands. Terminal illness is not always a threshold. Disabled people’s organisations have campaigned against this trend, instead demanding action against public spending cuts which inevitably fuel suicidal misery.
So, when government daily announcements about coronavirus deaths stressed the proportions who had ‘underlying health conditions’ this was a ‘dog-whistle’ to disability prejudice: to a language of division and an ethics of some lives mattering less than others.
We are at a profound moment. The Black Lives Matter movement demonstrates this in its very name and in the fundamental issues of equality, history and power that this assertion touches upon. There is nothing more important than living.