Covid-19 and the loss of disability rights: A view from the inside

By Abigail Pearson in collaboration with Kevin De Sabbata, Laura Pritchard-Jones, and Anthony Wrigley

On23rd March 2020, the prime minister, Boris Johnson, announced the first Covid lockdown. This measure was frustrating for many citizens; yet, for people with disabilities, it began a process of watching an inexorable retreat from our rights, which, we fear, will never be given back to us. On 26th March 2020 the Coronavirus Act 2020 entered into force. This Act gave local councils the power to suspend important care services for people with disabilities, such as needs assessments, and care reviews, should demand overwhelm providers or care staff fall ill in large numbers. These ‘easements’, were to be available on a tiered basis from stage 1, business as usual, to stage 4, whole system prioritisation and possible suspension. In effect, the Coronavirus Act suspended an important safeguard surrounding support services for people with disabilities. This safeguard stems from the provisions of the Care Act 2014. Under the Care Act, the implementation of support services for people with disabilities is premised by an assessment of the individual’s real needs. This safeguard was designed to ensure that care fulfils the actual desires and personal goals of individuals, rather than see them subject to paternalistic assumptions about what care is best for them.   

The number of local authorities enacting the higher tiers of Coronavirus Act easements for care services was relatively low. However, the impact of Covid measures in the wider context of disability rights cannot be underestimated. First of all, these statistics don’t include the many times in which, even with low infection rates, service providers still did not return calls or failed to fulfil their obligations because well, sorry, there’s Covid’. Second, due to the abolition of mandatory self-isolation and face masks, less-than-perfect vaccination coverage, and failure to adequately scale-up capacity, the health and social care services remain under pressure. Therefore, people with disabilities and long-term conditions still face long waiting lists and significant difficulties in obtaining the care they need at home. When considered along with a prevailing narrative of the Social Care crisis and staff shortages, this gives the impression that the pandemic has been taken as an excuse to disengage from disability rights for good.

Rights such as those to live independently, community care, and equitable access to health and support services, have been established only relatively recently thanks to  the Chronically Sick and Disabled Persons Act 1970, the Disability Discrimination Act 1995, and the UN Convention on the Rights of Persons with Disabilities (CRPD) 2006. Many of these rights were obtained only after decades of campaigning, and whose implementation, even before Covid, was patchy at best. The acknowledgement that people with disabilities have rights and day-to-day lives – let alone things that they want to achieve through them – is a relatively modern and fragile recognition. The shift towards individualised care budgets and personalised self-directed care services, initiated in 1997, was also a great step forward in promoting the ability for people with disabilities to shape their day-to-day lives and decide what is done to them. This also helped achieve a crucial (though not complete) change of mentality in service providers and the general public, away from previous medicalised and paternalistic approaches.

Now, that process of positive change seems to have been reversed. Some of us were forced to wear labels around our necks explaining why we were exempt from abiding to some restrictions, putting our medical and disability statuses out there for all the world to see, in an action that felt like travelling backwards in time to when people with disabilities were marked out as oddities or mere diagnostic labels. Letters were sent requiring people with disabilities and long-term conditions to withdraw from all non-essential contact and to stay at home. This had uncomfortable echoes of the institutionalisation of the past, and fundamentally undermined their right to social participation and to live within their communities (Article 19 CRPD). Despite the implementation of such measures ostensibly designed to safeguard their welfare, people with disabilities reported increased negative health outcomes and inequalities compared to those without disabilities. After years of protests and, finally, the recognition of the physical, social and cultural barriers which are the main driver of exclusion for people with disabilities, the emergency powers granted during the early days of Covid-19 felt like an arrest of the move towards coproduction and the consumer approach to social care provision that was developed in the 80s and 90s. That such a step was taken by Parliament without consultation with people with disabilities and their families felt like a return to the strongly paternalistic previous times of professional and medical dominance of previous legislative approaches to disability.

Instead of being acknowledged as potential human rights violations with long lasting consequences, these experiences have been typically repackaged and sanitised through campaigns such as the ‘Hold Still’ exhibition, in which images of isolation and separation were glorified as petards of resilience, forbearance, and – ironically – community spirit. Persons with disabilities were again presented as heroic in their sacrifice, yet with the underlying implication that all others could pity them and realise how lucky they are not to be amongst their number. Such imagery is not in line with Article 8 of the CRPD, which requires to challenge negative media stereotypes of disability, as seen in the 2016  UN Enable Photograph Exhibition (UNEPE), with the theme ‘CRPD and you’, which focused on promoting a positive view of disability. Moreover, this representation of disability unveils the hypocrisy of a society in which persons with disabilities are forced to be heroes and put in superhuman efforts just to secure the bare minimum they need to survive with dignity. The insistence on a rhetoric of emergency and heroism has also diverted the public’s attention towards ‘feel good’ images, such as rainbows and Captain Sir Tom Moore, and the brave actions of common citizens, rather than concentrating it on significant political and professional failures (the numerous examples of which include: delays in Covid containment, PPE scandals, confusing information on the virus, etc.).

The obvious objection to these critical points is that we have been in an unprecedented crisis and everyone has had to endure some restrictions. Even the CRPD, hailed internationally as the lighthouse of disability rights, requires, in Article 11, to take ‘all necessary measures to ensure the protection and safety of persons with disabilities in situations of risk.’ However, the point is rather why should people with disabilities suffer more than others? A statement from the Association of Directors of Adult Social Care in December 2021, highlighted the continued difficulties in delivering care in strained circumstances. Moreover, the continued pressures on funding and staffing, which are likely to continue to shape care provision long after the pandemic mean in reality that while most citizens are now left free to live their lives, people with disabilities are still forced to restrict their everyday activities and to deal with reduced care services. This approach has been defended by some saying that there would be no point in promoting ‘levelling-down equality’ and restricting the social life of all to protect a few vulnerable people. However, they seem to forget that equality, if it is to make remote sense, is about not allowing more to be given to some when there are still minorities of citizens who don’t even have access to basics or essential goods. In this regard, Wales, Scotland and Northern Ireland have shown more respect to vulnerable individuals by keeping in place at least some measures, like the duty to wear masks indoors, for longer than England. As stressed by Catalina Deyandas, measures like those allowed by Article 11 CRPD need to make people with disabilities be better off.  Throughout the pandemic, the government has justified restrictions with the need to protect older people and people with disabilities. However, if they are used to indefinitely deprive them of rights and dignity, what’s the point? Now that, to many citizens, the pandemic seems over (despite substantive evidence that it will never be really over, as Covid is becoming endemic) and the risk of forgetting what happened grows stronger, we need to raise some uncomfortable truths.  Our reaction to the pandemic has not been the rational, brave and efficient reaction of a united society in the face of crisis. Far from it. It has shown how we are all too ready to sacrifice the rights and the lives of vulnerable citizens, such as persons with disabilities, in exchange for avoiding trivial restrictions, such as not having to wear a mask in restricted public environments. Moreover, for people with disabilities, the difficulties and restrictions they faced during the pandemic are still ongoing. A 2022 reportfrom the Office of National Statistics indicated that 16% of disabled people, compared to 10% of those without disabilities, believed that life would never go back to normal, whilst only 6% of people with disabilities compared to 11% of those without believed that life had already returned to normal. It seems that, for some citizens not, everything might not probably be ok in the end.