The World Socialist Web Site spoke to disability campaigner Doug Paulley about the impact of the coronavirus pandemic on the disabled. Doug has campaigned for the rights of people with disabilities for many years. He has recently been involved in legal action opposing the use of “scoring” systems to deny ventilator treatment to the sick, disabled and elderly.
The WSWS drew attention to the appalling treatment of people with disabilities in an article mid-June, exposing the social-Darwinist policies of the Johnson government. Figures released by the Care Quality Commission showed more than twice as many individuals with learning disabilities died during the peak of the coronavirus pandemic than in the same period last year.
The WSWS explained, “The COVID-19 death rate among disabled people is a result of deliberate policies by the British ruling class. A barely concealed agenda of social euthanasia has found expression in numerous medical guidance documents published during the pandemic, which suggest that coronavirus patients can be denied or deprioritised for medical care solely on the basis of their age or existing mental or physical disabilities.”
Doug told the WSWS about his own health conditions and explained the precarious situation facing people with disabilities living in care homes:
“I am a full-time wheelchair user with care needs living in a care home. I have autonomic failure and had a stroke; I have hearing loss.
“It has been very scary, particularly at the beginning of the crisis. I am entirely reliant on other people to ensure continuity of provision of care, food and other resources and I have little to no confidence in the organisation that runs my care home. Communication from them has been very poor and as a result I have been left uncertain and worried, as have other residents and staff.
“There have been concerns about the care home’s failure to access coronavirus testing when there were symptomatic residents there—these are currently subject to legal action from me. There have also been concerns about residents’ families breaking lockdown and putting us at risk by meeting residents over the garden fence.
“During the pandemic, I have still received all my medication, which was an initial worry, but some of the services I have been referred to—e.g., dermatology—have simply refused referrals or discharged me because of coronavirus competition for resources. Others have been downgraded, with all my GP [general practitioner] appointments and one consultant’s appointment having been by phone, which is difficult for me due to hearing loss. Private psychological support has continued via online video conferencing.”
The WSWS asked Doug about medical guidance documents issued during the pandemic which claim to help medical workers decide which patients should receive life-saving intensive-care treatment if hospitals are overwhelmed. Guidelines from the National Health Service (NHS), National Institute for Health and Care Excellence (NICE) and the British Medical Association (BMA) have all been the subject of legal action for being discriminatory and in violation of the fundamental human rights of disabled people to have equal access to health care.
Doug said the official guidance “peels back and exposes the real societal approach to disabled people. Disabled people have known for years that we are considered at best a charitable addition or distraction from the provision of services to ‘mainstream’ society. Such provision is seen as a ‘nice to have’ or an ‘optional charitable extra’ or a ‘feather in the cap,’ rather than an essential part of society. This has been clear to disabled people for a long time, for example through the terrible treatment by the Department for Work and Pensions, social care cuts and so on. But these documents lay this situation bare.
“It feels like ‘whack-a-mole’: as soon as we challenge one terrible and unacceptable document, another pops up. There was the NICE document, which we fought and got clarified and changed. Then letters from CCGs [clinical commissioning groups] saying care homes shouldn’t expect their residents to get critical treatment and to discuss DNRs [do not attempt resuscitation notices]—for example the letters from GPs in Llanelli, Wales. Then the unclaimed NHS “decision support tool.” Then the BMA guidance. Then disabled ventilator users being told they can’t have filters for their ventilators because these are being prioritised for COVID-19 patients. Each time, they are challenged and mitigated to some extent, and then a new one comes along.”
Asked about the CQC figures showing the disproportionate COVID-19 deaths among disabled people, Doug said, “It is utterly tragic and a terrible indictment of the government and of society. I don’t have sufficient evidence to comment on how the policies and practices such as DNR notices have contributed to these tragic deaths, but I have no doubt they will have had some impact. There will have been both a direct impact—with DNR notices resulting in some people not being resuscitated—as well as an indirect impact, as a result of internalised oppression, with disabled people and their relatives absorbing society’s devaluing of their lives. This will have resulted in some disabled people undervaluing their own right to life.
“We know that in ‘peacetime,’ that is non-pandemic times, doctors have put DNR orders on [disability campaigner and House of Lords peer] Baroness Jane Campbell, so I have no doubt that this will have been more prominent during COVID-19 times, no matter how much medical professionals, government and administrators attempt to consciously avoid it.
“The societal trend over the past 20 years, of portraying disabled people as burdens, shysters, fakers, chancers, not bringing any value, needs to be reversed. To me, this is the ultimate cause of the situation: the transparent devaluing of disabled peoples’ lives. There’s a paper-thin veneer and legal fiction that the government cares about disabled people, but it takes an incredible act of doublethink for any of them to actually believe that the veneer is true.
“I think Philip Alston’s comments [condemning the UK government’s herd immunity policy as ‘social Darwinism’] are spot on. And while it doesn’t mention eugenics specifically, I think that is what is actually happening: eugenics via the back door. The late imposition of lockdown, the ‘herd immunity’ policy, and so on, all came across to me as ‘chuck the disabled and otherwise devalued people under the bus.’ An uncaring disregard for disabled people during a pandemic isn’t a passive act: it is active eugenics, and I call it out as such.
“It is a similar story with the lack of PPE [Personal Protective Equipment] for social care workers, the very late guidance for disabled people who employ their own PAs [Personal Assistants], the failure to institute a proper, reliable and publicised test system for care-home residents, the lack of clarity as to when shielding people can come out … Ultimately, this showed me that the government just don’t care what happens to the most dispossessed.
“Why is eugenics and social-Darwinism resurging? What societal or other factors are behind this? I’m clear that there is a conscious decision among some of the ruling elite to do this; others go along with it and don’t challenge it. Why are they doing it? Perhaps the financial cost? The effort required to do more? But these factors are, I would say, symptoms of the active and passive eugenicist intent of the government, rather than the drive behind it.
“I am attempting to take out legal action against the government for its de-prioritisation of critical care for disabled people. The specific attempted legal action was against the government’s failure to produce guidance for critical-care providers, with other organisations setting the criteria and procedure by which they allocate critical care in the event there were insufficient resources to meet the demand.
“The various documents produced by statutory and quasi-statutory bodies included guidelines stating that even if a disabled person is responding to critical-care treatment and has a realistic prospect of recovery, critical-care resources, such as ventilators, could be taken off them in order to save others’ lives, if the other people may recover more quickly and/or more thoroughly.
“The basic calculation is: if a disabled person needs a ventilator for a prolonged period and is unlikely to recover to how they were before COVID-19, and four other people could be treated with that ventilator in that time and would recover fully and may die without it, who gets the ventilator? This is an impossible situation to put frontline doctors and administrators in. They were crying out for national guidance and instructions as to what to do. Disabled people afraid for their lives were also crying out for such guidance. The government didn’t produce it, but they should have done.
“We are now looking at a potentially wider piece of work examining NHS trusts’ policies and procedures for treatment prioritisation and protected characteristics—at least in part as preparation for any subsequent waves of COVID-19.”