A story of resilience
In late February, early March, the country began to feel a sense of foreboding as international news stories started to focus on a new deadly virus called COVID-19. Having an overactive imagination and being a horror movie enthusiast, I remember thinking, ‘We could be in for a real-life Dustin Hoffman disaster movie’! For those youngsters with us today, this is a cultural reference – to the 1994 pandemic film classic, called ‘Outbreak’. Check it out on Netflix, the parallels are uncanny.
On 16 March 2020, my imagination gave way to a chilling reality. The Prime Minister bluntly announced on prime-time TV that all but essential social contact should cease by March 25. The Coronavirus Act was passed, giving sweeping powers to government and local authorities to override some of the civil and human rights we enjoy in this country.
Fast forward to today and I find myself bewildered, astonished and terrified by the pace of change to disability rights and civil rights in general … And not in a good way.
Not all these changes were because of the pandemic. Britain’s exit from the European Union, the weakening of disabled people’s access to justice, cuts to essential life-and-death services in health and social care, have collectively eroded hard won disability and human rights by stealth in recent years.
This was starkly revealed when the UN Committee on the Rights of Persons with Disabilities’ examined, the UK Government in 2017, on it’s progress in fulfilling their commitments under the UN Convention on Disabled People’s Rights . The Committee reported breaches under Article 19, 27 and 28. It concluded that “some violations were grave, some others were systematic and some were both”. Such terms are rarely used in reports of this kind. There followed a series of exchanges between the UN Committee and UK government, but little progress was made.
Again, in October 2018, the Equality and Human Rights Commission (EHRC), in their progress report on disability rights in the UK, concluded that
“the most recent evidence about disabled people’s rights is deeply concerning. …. across the UK they face serious regression of many of their rights…. Social protections have been reduced and disabled people and their families continue to be some of the hardest hit.”
Disabled people and their families have been struggling for over a decade to retain what was promised by the Disability Discrimination Act 1995 (the DDA) and the Disability Rights Commission (the DRC). The once well-funded Commission strategically and vigorously drove the rights agenda hard, enabling wholesale changes to be made to the fabric of society. However when In 2007 the DRC was subsumed into the EHRC and the DDA was replaced by the Equality Act, the pace of change slowed dramatically.
In the era of austerity, the rights of disabled people became easy targets for Government interference and cuts, and so it has proved.
With this background in mind, this lecture, will focus on the COVID-19 pandemic, to show how disabled people’s equality and human rights, already diminished over recent years, can rapidly be forgotten when a global disaster descends. However, this is not a lecture of doom and disaster. I will also show how disabled people have survived through this time with resilience, ingenuity and collective action, often with legal allies by their side.
On April 30th, this year the UN High Commissioner for Human Rights, Michelle Bachelet, warned States,
“People with disabilities not only face greater risks from COVID-19, they are also disproportionately affected by response measures, including lockdowns.”
She called for targeted measures to address the disproportionate risks faced by disabled people, both in their homes and in institutions. She said that “evidence from across Europe, was already emerging that care facilities were recording high fatality rates from COVID-19, along with horrific reports of neglect of those living alone”.
This announcement prompted the UN Human Rights Office to publish a guidance note for governments and other stakeholders on COVID-19, stressing the importance of safeguarding the human rights of disabled people.
This was ignored In the UK. Instead multiple announcements proclaimed “we must protect the vulnerable, and protect the NHS”. Daily bulletins informed the nation of the rates of infection and fatalities, always with a rider that most deaths were amongst people with “underlying health conditions”.
I remember thinking, “That’s us, we’re back in the “vulnerables club”! God help us! Why didn’t I feel protected and shielded by the state? Why didn’t their promise to “protect the vulnerable” give me any comfort?”
One of the answers to this question lies in the number of disabled people who fell victim to the virus during the first wave, in comparison to their non-disabled peers.
According to the Office for National Statistics (ONS), disabled people made up about three-fifths of COVID-related deaths in England and Wales, although it concedes that this is “likely to be an under-estimate”. There were more than 27,500 coronavirus-related deaths of disabled people between 2 March and 14 July, compared with about 18,800 of non-disabled people. If one differentiates between physically disabled people and those with learning disabilities, the evidence is even more disturbing. Last month a report from Public Health England (PHE) found the death rate for those with a learning disability was 30 times higher than for their non-disabled peers in the 18-34 age group.
These shocking figures reveal that appropriate measures to minimise the risk of people with learning disabilities from catching Covid19 were ignored in national contingency planning with devastating effect.
Disabled people’s most essential human right, Article 2 – The Right to Life – appeared to be in some doubt as early as the beginning of March. I remember receiving a call from a very distressed disabled man, who told me his GP had rung to ask whether he would allow a DNR instruction to be placed onto his notes because
“it wouldn’t be in your best interest to go to hospital or put on a ventilator in the event of contracting Covid 19”.
It transpired this was not a one-off mistake by some misguided clinician. Reports of similar telephone conversations and letters were received countrywide, asking disabled people, or those with long-term medical conditions, to sign a form to
“ensure emergency services would not be called if your condition worsened due to coronavirus” or, if admitted, a DNR would be placed on their notes.”
Increasing numbers of disabled people articulated their fear that value judgments were being made about their quality of life, as a direct result of “pandemic fever”. They felt the potential for discriminatory decision- making, if they needed treatment for coronavirus, was very high.
This increased when a NHS-branded “COVID-19 decision support tool” was published in the media, where “frailty scoring” was proposed to enable doctors to make treatment decisions. Examples like “patients completely dependent on others for their personal care” – illustrated with the image of a wheelchair-user – indicating a person unsuitable for ICU treatment if over the age of 60.
Thankfully, the Disability Movement has a network of good legal allies, so it didn’t take long to seek out public law and human rights experts. A law firm wrote to the Secretary of State for Health and Social Care pointing out that failure to produce guidance on how decisions were to be made, was discriminatory and a breach of their clients’ human rights. Interestingly, no one within the Government or NHS admitted ownership of the support tool.
Supported by a number of disability organisations and allies, we drew up a statement signed by 160 disability organisations, calling upon the Government to
“uphold the equality and human rights of disabled people within the principles on which the NHS is built when delivering treatment throughout the pandemic.
And reminded the Government that
“Disabled people should have the same chance of benefiting from Covid 19 treatment and not be subject to how our lives are valued by society or our existing health conditions or impairments, that are unrelated to the virus”.
The statement also called for guidelines on the assessment, provision, and evaluation of treatment and care provided to individuals during the Covid-19 pandemic. And most importantly, that the guidelines should be developed in collaboration with disabled people’s organisations and representatives from human rights bodies.
Within a week I received a letter, jointly signed by Stephen Powys, the NHS’s Chief Medical Officer and Ruth May, Chief Nursing Officer, stating,
“The NHS endorses and fully supports the principles set out in this statement letter. They mirror the NHS Constitution which is clear that we should deliver care and support in a way that achieves dignity and compassion for each and every person we serve. Decisions about the best course of action, treatment and care pathway are always made between a patient and their clinicians, and the NHS will always seek to fully protect the rights of people with disabilities, now and throughout the course of this global pandemic”
The following week, when answering a press question regarding random DNR notices discovered on older and disabled people’s notes, the Secretary of State clearly repeated the sentiments of the letter, when he said
“blanket application of do-not-attempt-resuscitation orders is totally unacceptable and must not happen.”
At my request, an NHS England working group of senior clinicians, disabled people and health experts, was established to develop a set of principles to guide NHS clinicians with respect to disabled people in a pandemic, and this group is still active.
This demonstrates the power of disabled people’s self-advocacy and their ability to challenge, with the support of allies, potentially grave violations of the Equality Act and Human Rights Act. The right to NHS treatment and in essence, the right to life itself, was a small but significant achievement. However, it was clear that disabled people were going to have to fight hard for our fundamental human and civil rights to be maintained over the coming months of the pandemic.
While the Government peddled the slogan of “protecting the vulnerable”, disabled people and their allies began to effectively communicate with one another through campaigning networks, organisations and social media. History has taught us that we need to be the author of our own solutions. So our networks went into overdrive mobilising peer support, disseminating accessible information and organising political campaigns. It didn’t take long for our top 5 coronavirus survival priorities to emerge:
1. Sourcing food from supermarkets and lobbying for priority delivery slots to be a ‘reasonable adjustment’ in law.
2. Access to vital PPE for our care and support staff.
3 Assurance of equal access to healthcare, not subject to DNR notices or frailty scoring for intensive care.
4. Accessible information e.g. sign language interpretation on the 5pm Coronavirus briefings.
5. Campaigning for a dedicated list of volunteers able to support us, if our PAs or other key workers fall ill.
However, instead of taking note of the UN Human Rights Office’s call “to engage persons with disabilities in the COVID-19 response, and adapting plans to address their needs”, we “vulnerables” were told we were shielded, put on a list, and sent guidance but without the means to follow it.
Vulnerability conceptualisation is static and meaningless. It simply serves to anonymise our humanity and human rights. We become “othered” – passive victims instead of actively involved citizens. So, “Stay at home” did not necessarily equate with “staying safe”. For many, risks increase when isolating. With no PPE supplied for PAs and other key support workers, no means of sourcing regular food, diminishing health and social care support, and no involvement in producing national guidance, disabled people’s lives were in great danger.
For those living in care homes, it was even more treacherous. Covid- positive residents were being discharged from hospital back into the homes, placing everyone there at tremendous risk. This was not a human rights response to the Government’s duty of care to its so called “vulnerable citizens”. One began to feel there was little difference between being labelled ’the vulnerable’ and ‘the expendable’.
In mid-July it was reported that the UK government had “breached the rights of disabled people in at least 17 different ways during the coronavirus pandemic”.
But, disabled people in the UK did not take these breaches lying down – quite the contrary. We have a long history of civil rights campaigning and the pandemic called for us to renew our efforts to fight back.
For example, the deaf community ran a campaign to demand sign language interpreters on the Government’s daily national pandemic briefings, and started judicial review proceedings under the Equality Act reasonable adjustment provisions.
And when the Coronavirus Act easement powers became law, paving the way for some of the most alarming restrictions to essential care and support, we raised our voices again.
The decision-making process suggested by the Department of Health and Social Care in adopting the easements, comprised two levels. The first allowed limited changes, such as delays or alteration to ‘service types’ for meeting needs.
The second level permitted local authorities to make changes without regard to their legal duties or the thresholds concerning assessment, without applying the formal eligibility regulations, without undertaking the care plans or financial assessments normally required, or meeting any needs, unless it constituted a breach of human rights. In other words, personal care could be reduced regardless of need.
Local authorities have been significantly underfunded for years. Nobody underestimated the challenges they faced throughout the coronavirus first wave. However, it was essential that social care provision remained compliant with equality and human rights laws to help disabled people cope with the challenges posed by the pandemic. Without this protection our vulnerability to the virus increases exponentially.
In their submission to the Joint Committee on Human Rights, the EHRC reminded the UK Government of its obligations to protect the right to life, the prohibition on inhuman and degrading treatment, the right to liberty and security, and respect for private and family life, without discrimination,. In addition the Government has a UN treaty obligation to protect, respect and fulfil the right to independent living. This is a fulcrum right about ensuring that disabled people are able to exercise freedom of choice and control over decisions affecting their lives on an equal basis with others.
Although only 10 councils officially took advantage of the easement powers between April and the end of July, many others were reported as restricting or cutting services essential for disabled people’s independent living needs.
To challenge the new threat to disabled people’s right to independent living (Article 19 UNCRDP), disability organisations conducted local and national surveys to gather evidence. The guidance from the Department of Health and Social Care (the DHSC) to local authorities warned that Easement Powers should only be used:
“when the workforce is significantly depleted, or demand on social care increased, to an extent that it is no longer reasonably practicable for it to comply with its Care Act duties”.
But it soon became clear that such thresholds were being disregarded.
The “Be Human” movement, which grew out of the disability organisation ‘In Control’, set up a register, to record the experiences of disabled people, people with long-term health conditions, their carers and their family members, in getting health and social care services and treatment for Covid-19.
From this data and other reports, it became clear that the Coronavirus Act easement powers urgently need to be switched off. With backing from 22 cross-party members of the House of Lords, I wrote to the Secretary of State to that end. We are still waiting for a reply…
NGOs such as Liberty and the EHRC came on board with the campaign repeated calls for the easement powers to be repealed,pointing out,
“In line with its obligations under the Public Sector Equality Duty, the DHSC should increase its oversight of changes to social care provision across local areas and ensure that recovery planning and national policy decisions are informed by accurate and up-to-date data.”
These campaigns and legal challenges are just a few examples of disabled people and their allies demonstrating astounding resilience in the face of both the virus and social injustice. We are surviving the challenges of the “pandemic culture”, despite enormous barriers to our inclusion. This year has shown how quickly our fundamental rights can be snatched away. Our legal allies have never been so important.
Our struggle continues. Only last month we saw the priority list for the much awaited vaccination programme. Disabled people, no matter how severe their medical condition, have lower priority than all 65 year olds. So, my healthy, tennis-playing sister, and the rock queen, Annie Lennox will get the jab before a younger, severely disabled person on a breathing machine!
Despite the threat from a deadly virus and despite an assault on our fundamental disability rights disabled people have not been passive victims during the pandemic, and won’t be in the future. Along with our allies, we have organised and fought from the start of the pandemic. However, we are still at great risk. Our fundamental right to live with dignity, respect and equality has been deeply threatened. As one disabled woman put it,
“My fear is what the long term effects will be…If I get corona, I’m going to die because I’m disabled and someone along the line has decided that my life is of less value. I’m not 30 yet. There’s still so much more that I have to do.”
She is right. And there is so much more that we could all do together to protect and promote disability rights. It is the only way to protect and value everyone’s future.
Click here to watch the recording of Jane’s presentation of the above speech as the Caroline Gooding Memorial Lecture, 2020.