Coronavirus / Disability rights

Under pressure: disabled people mobilise to defend their human rights

Posted by Katharine Quarmby on 16 Apr 2020

“It’s been extraordinary to see the speed and spread of soft eugenic practices”, says Sara Ryan, a disability rights activist and academic. She explains her fears: “There are clearly systems being put in place to judge who is and isn’t worthy of treatment”.

Ryan, an expert in social care and scholar activism at the University of Oxford, also speaks from personal experience. In 2013, her son, Connor Sparrowhawk died in what was a preventable accident, drowning in a bath in a NHS unit. Her campaign, #JusticeforLB, sought accountability for Connor’s death, raised awareness of the discriminatory treatment for people with learning disabilities and mental ill health, and still seeks to challenge systemic failings in the healthcare system.

Now Ryan, along with many other disability rights activists, is rallying again. In the UK, there are over 11 million people living with an impairment, of which around 45% are of pensionable age. The most pressing concerns include healthcare rationing impacting disabled people, education for disabled children, accessible information about the pandemic, a crisis in social care and the chilling scale of outbreaks in care settings.

The British disability rights movement, rather than being flattened by the pandemic, seems energised. To this end, a powerful coalition of disabled people and allies wrote to NHS England in early April, stressing that rights to treatment and involvement in decision-making could not be set aside for the length of the pandemic, stressing key principles, including: “Our individual chance of benefiting from treatment should we have COVID-19 must not be influenced by how our lives are valued by society.”

“There are clearly systems being put in place to judge who is and isn’t worthy of treatment”.

Sara Ryan, disability rights activist and academic
In 2013, Connor Sparrowhawk died in what was a preventable accident, drowning in a bath in a NHS unit. Connor’s mother, Sara Ryan, campaigned for accountability for Connor’s death, raised awareness of the discriminatory treatment for people with learning disabilities and mental ill health, and still seeks to challenge systemic failings in the healthcare system. Picture credit: #justiceforlb

The NHS National Medical Director and Chief Nursing Officer responded the next day, saying that “the NHS will always seek to fully protect the rights of persons with disabilities, now and throughout the course of this global pandemic.”

However, Tanni Grey-Thompson, a crossbench peer and prominent former Paralympian, told Liberty Investigates that real concerns remain: “Most people I speak to understand that this is the worst crisis that we will have seen in our lifetime and that there are many difficult choices that will have to be made. The judgement on quality of life is a difficult one, but many disabled people know regardless of what they contribute to society, many people see them as a drain.”

Despite this reassurance from the NHS, early and careless talk about ‘herd immunity’ in and around government galvanised fears amongst marginalised groups, including disabled and older people that their right to life and to equal access to medical treatment were under threat. The government has now denied that herd immunity was ever a formal strategy and instead containment has been put in its place.

Ryan maintains that there is ample evidence of unequal practice, citing the government’s “woeful engagement with social care and ignorance around the lives that disabled people (and carers) lead” and fears around medical treatment. She adds: “The position of the government is that clinical judgments will be made around treatment on an individual basis but this is not happening.”

"The judgement on quality of life is a difficult one, but many disabled people know regardless of what they contribute to society, many people see them as a drain.”

Tanni Grey-Thompson, crossbench peer and prominent former Paralympian

Barristers Victoria Butler-Cole QC and Steve Broach were instructed in March 2020 on a proposed challenge to the National Institute for Health and Care Excellence (NICE) guidelines on critical care in the context of the Coronavirus pandemic. The published guidelines suggested that patients with autism, mental disorders or learning disabilities would be considered frail, meaning that they would likely be denied care. Following the challenge NICE hastily rewrote the guidelines, and the British Medical Association (BMA) and Care Quality Commission (CQC) have clarified their positions too.

However, disabled people remain concerned that access to critical care may still be denied at the point of need. Younger disabled people have since written of their fears of being denied treatment. Chris Hatton, Professor of Public Health and Disability at Lancaster University, warns that some clinicians may use “scarcity of health services…in the cloak of clinical prioritisation as a rationale for further discrimination against vulnerable groups, including people with learning disabilities.”

Steve Broach, for his part, tells Liberty Investigates: “What must be avoided is unlawful discrimination – for example if a particular prioritisation policy has a disproportionate adverse effect on disabled people, this will be unlawful indirect discrimination unless it can be justified as a ‘proportionate means of achieving a legitimate aim’. Although the legitimate aim may be obvious – e.g. sharing scarce healthcare resources fairly – the real question in every case will be whether the policy is proportionate. In essence, this means that it strikes a ‘fair balance’ between the interests of the particular individual and group (here disabled people) and any wider interest.”

Andrew Cannon, the CEO of Voyage, an organisation championing supported living, has presented evidence to the CQC of a number of GPs sending out blanket Do Not Resuscitate notices to disabled people. Other media reports suggest that disabled and older people elsewhere are also being asked to sign notices, with a number of young disabled people with conditions worrying that they may not be prioritised for care if they contract COVID-19.

Tom Shakespeare, Professor of Disability Research at the London School of Hygiene and Tropical Medicine, who has survived the virus and has a disability, says: “I can see why people are terrified. There may be discrimination but there is also an underlying vulnerability which some disabled people have that we can’t get away from. The biggest issue is that COVID-19 exposes our vulnerability – impairment impairs.”

Around half of disabled people are older, a group particularly at risk from COVID-19. Figures released this week (14 April 2020) from the Office of National Statistics underline the grim picture in care homes housing older and disabled people, where it is currently estimated that the infection is present in at least one in ten homes.

Many disabled people have other conditions that put them at increased risk from the virus. Many people with learning disabilities, for instance, have health conditions that could put them at increased risk of COVID-19, including respiratory conditions, obesity and heart conditions. But there is a wider context, that people with some impairments already die earlier, partly because of substandard care.

Health inequalities are already present within the NHS – with an average age of death 23 years younger than the general population for men with a learning disability, and 27 years younger for women. Such inequalities are likely to be widened by this crisis, rather than narrowed.

Disability advocate Alicia Wood, who lives and works between the UK and Spain, observes: “I think that there has been lots of problems in Spain with them being slow to act but what has been constant from the start is a very public reassurance that older and disabled people matter and will be protected as much as possible – despite this, in Madrid they have had to make decisions about who gets the ventilator and who doesn’t. This messaging is missing in the UK…many people are simply terrified about what will happen if they get COVID-19…I feel like I have been sitting watching a car crash happen in the UK and I want to be wrong on this, but I feel that disabled and older people have been left at the bottom of the pile.”

Disabled people and rights experts raise other issues too, which are of global concern. On 17 March a group of UN experts issued a statement calling for a human rights approach to the pandemic. Prominent voices among them were the expert on rights of older persons and Catalina Devandas, the UN Special Rapporteur on persons with disabilities. She said: “Little has been done to provide people with disabilities with the guidance and support needed to protect them during the ongoing COVID-19 pandemic, even though many of them are part of the high-risk group”.

In a later statement about the rights of older persons, the UN expert, Dunja Mijatović, stressed that the pandemic “brings to light the failings of large, institutional settings”. This is also true of disabled people, who are disproportionately housed in group settings, despite the government’s commitment to independent living.

It is striking that those who are institutionalised in any form of group setting, whether they be prisoners, older people, disabled people or children, are more vulnerable to outbreaks of infections. This has already happened in care homes in both Spain and the US, with over 100 infections in a long-term residential facility in Washington State in February. One fifth of those affected died.

A group of US public health scientists published a paper in mid-March in which they observed that, “once COVID-19 has been introduced into a long-term care facility, it has the potential to result in high attack rates among residents, staff members, and visitors.”

Care workers and organisations representing older and disabled people are urgently calling on the government to resource protective equipment better in residential settings, and for government to be far clearer about how to prevent wide-scale infection.

Data published by the Office of National Statistics shows that 7% of coronavirus related deaths registered in the week ending March 27th happened in care homes, private homes and hospices. Care workers as well as residents have died. The figures have increased sharply since then, and there is controversy about whether the ONS is measuring all deaths in such settings accurately.

Wood observes that the UK does not seem to have learned from other countries: “In terms of disabled and older people, there has been evidence in Spain for at least two weeks that health and social care workers are succumbing to the virus in high numbers (something like 15% of cases) and those they care for are dying from it. You will have read the horrific story of dead people being left in their beds in care homes – the government here immediately prioritised testing of care home workers for this reason and I don’t understand why the UK government isn’t learning from this.”

At the same, shifting care to community living is problematic, where many carers are poorly paid and highly stretched. The Coronavirus Act has suspended the duties of councils under the Care Act to meet the needs of disabled people during the emergency – at a time when they may need support most. Many also cannot get the deliveries they need, including medication and food, despite being told to self-isolate. Many also worry that they cannot protect themselves from infection, as they are dependent on personal care from outside their homes. Broach says: “It should be a source of national shame that part of the response to the pandemic has been to suspend many of the key rights for disabled people to have their care needs met under the Care Act 2014.” Tanni Grey Thompson, for her part, says: “Social care was in a tough place already… Reducing their [local authority] commitment means that there will be some people who will not be able to access the social care that they require.”

Broach adds that the lack of a government strategy to protect the rights of groups at risk means that disabled people and their allies will have to remain vigilant. “We have repeatedly had to challenge guidance which we say is unlawful and potentially discriminatory against disabled people – from the Department of Education, the National Institute for Clinical Excellence and the Cabinet Office. In each case the guidance has been changed, but by then much of the damage has been done, with local decisions already having been made under the original version of the guidance.” To that end, the legal firm Rook Irwin Sweeney announced on 14 April that it will be working pro bono with Steve Broach, on behalf of disability campaigners to challenge the failure of the Secretary of State for Health and Social Care and/or NHS England to publish guidance on healthcare rationing.

Tom Shakespeare warns that disabled people “are going to be forgotten in an epidemic, because we are not valued, we are overlooked and neglected”, although he stresses that this is more to do with a fragmented and ramshackle approach to public health, rather than a conspiracy. “The Germans are doing better because they are systems-oriented. Social care and the NHS have been historically underfunded and so we have come up with what looks like Heath Robinson solutions and things and people get overlooked. We are not seen as priority, we are out of sight, out of mind.”


Header image credit: Disability News Service