The coronavirus has changed our society very quickly and those changes are going to last for a very long time. We must make sure that the human rights of disabled people don’t fall by the way-side in this process
What coronavirus has shown us about our society
We are currently facing the biggest societal change in Wales and the rest of the world since the Second World War. Within only weeks, life for most of us has changed beyond recognition. This change has been disorienting and dizzying for most of us. It has taught us a lot about our society. There have been some extraordinary examples of solidarity. Out of nowhere, mutual aid groups have sprung up to offer each other support. From rainbows in windows to clapping on our doorsteps in support of care staff, the last weeks have shown us the best in people.
However, the coronavirus crisis has also highlighted just how unequal our society really is. We may “all be in this together”, but the way that this pandemic affects us differs immensely depending on our circumstances. For some of us, lockdown has meant moving to comfortable home offices and working in our pyjamas. For others it has meant either losing our jobs or, for many working in frontline jobs, putting ourselves at risk every day for minimum wage. For many disabled people, both Welsh and UK government’s responses has meant losing vital support.
Crises are always a time of re-organisation within society. While the last few weeks have seen massive change happening very quickly, we now need to prepare for the fact that our lives have changed not just quickly, but also for the longer term. Within that time we as a society are going to have to examine what our priorities are and unfortunately there is a real danger that the lives and wellbeing of disabled people will not be amongst those priorities.
Why are disabled especially people at risk?
There are a number of reasons why disabled people are particularly vulnerable at this time (see here and here). It is extremely worrying that in response to Covid-19 the UK Government has decided to effectively roll back disability rights by 30 years by suspending rights to social care provision as part of the Coronavirus Bill. Disabled people in Wales could potentially be even more severely affected as, unlike the suspension of the Care Act (2014) duties in England, there is no express requirement to avoid breaches of the European Convention on Human Rights included in the suspension of the Social Services and Well-being (Wales) Act.
A further cause for concern has been the NICE guidelines for coronavirus critical care treatment that uses a “frailty scale” to decide who should be receiving critical care treatment. After protests from disabled groups, it has been clarified that this scale should not be applied to some disabled people.
Even as the guidelines have been amended, the fact that the frailty scale was used in the first place is a worrying sign that at a time where people have to make “difficult decisions” those making these decisions do not automatically take into account the special circumstances of disabled people. As pressure on the National Health Service increases and overwhelms its limited resources, we will have to face a situation where not everyone can receive the treatment they need. It is terrifying to think that disabled people might merely be seen as unavoidable casualties in these situations.
It is particularly tragic that it may well be people’s need to hold on to the idea that decisions like these can be fair that poses the biggest threat to disabled people. It is hard for us to accept that people are going to die needlessly simply because there are not enough resources to treat everyone. People who have to make these decisions are likely to try their best to be as fair as possible. But the problem with this is that there is nothing fair about any of this. And to try and find a narrative in which we avoid withdrawing treatment from people unfairly opens the door to discussions about whose life is worth living and whose is not. Discussions that have no place in our society.
These issues can be seen in the NICE guidelines, which lay out their basic purpose in the opening paragraph:
“The purpose of this guideline is to maximise the safety of patients who need critical care during the COVID-19 pandemic, while protecting staff from infection. It will also enable services to make the best use of NHS resources.”
It is important to note that these are three separate goals and that rather than supporting each other, they may come into conflict with one another. Later on in the guidance it says that doctors should “base decisions on admission of individual adults to critical care on the likelihood of their recovery, taking into account the likelihood that a person will recover from their critical care admission to an outcome that is acceptable to them.”
There is a tremendous amount of ambiguity in this guidance. It is good in general that the guidance says that the patient should decide what is an acceptable outcome to them. But more generally worrying is the implication that some people should be denied treatment on the grounds that they are not likely to recover “enough.” This isn’t to say that critical care treatment is always the right choice for everyone and that there aren’t cases where it would generally not be in the patient’s best interests to be admitted to a critical care unit. The danger here is that as resources become scarce and the NHS becomes unable to provide life-saving treatment to everyone, the definition of what is an acceptable outcome will be coloured by ableist ideas of what a life worth living looks like.
Protecting human rights in the coronavirus crisis
In light of these issues, it is important to keep fighting to protect the rights of disabled people in the current crisis. Several organisations and individuals have spoken up to protect disabled people from ableism and coronavirus. The organisation Doctors United issued a statement last week condemning the way that current guidelines put different values on people’s lives.
“The arbitrary condemnation of one group or another is inexcusable. Being old, living in a care home, or having a pre-existing disability should not lead to an automatic exclusion from possible treatment. Blanket categorisation of large groups of people in such a way is prejudice. There is no place for it in the NHS.”
Last week over 1000 people signed an open letter from the Wales Disability Reference Group within 24 hours calling for the human rights of disabled people to be respected. Going forward this is going to be more important than ever. The issues that Covid-19 is revealing are not new. Disabled people faced significant health inequalities long before coronavirus came along and, due to underfunding, the NHS struggled to keep up with demand even before having to deal with all the extra coronavirus cases. The Welsh and UK governments must not just prioritise the wellbeing of disabled people in this crisis, they must also ensure that once the worst of the pandemic has passed we make sure our social care system is resilient enough to weather the next crisis.