Systemic Neglect: On the devaluing of disability during the pandemic

Its rare that I address social issues head on in this blog and I will be doing more than just bringing the news up but I hope you understand that I’ve always tried to emphasize that the lives of autistic or ‘disabled’ individuals is no less important than that of anyone else, no matter how much they are maligned or even discriminated against. I couldn’t stay silent on this…

In the UK, people with learning difficulties have been given do not resuscitate orders during the pandemic. This has continued despite The Care quality Commission warning in December that these notices caused avoidable deaths in people with learning difficulties last year. To clarify, these notices are intended and should only be used on people who are too frail to benefit from CPR, or absolutely cannot be resuscitated. This does not include anyone and everyone with a disability. The charity Mencap even say that they have received correspondence from people with learning difficulties who have been told that they would not be resuscitated if taken ill with Covid-19! Worst of all, the same organization say that these seem to have been issued for some, simply because they have a learning disability.

This underlines the way we see learning difficulties in this country. We see them in terms of ‘frailty’. We think because someone struggles to interact properly, they must therefore struggle with everything. How terrified and angry would you feel if in the middle of a global pandemic you were told that if you succumb to life threatening levels of illness, you will not be revived? Now put yourself in the shoes as someone with a learning difficulty. Even I as an autistic person feel less safe and cared for by my own government, as a result of this news. This news shows criminal failure to look at the nuances – ‘if you’re disabled, that means your too weak to deserve treatment that could save your life’. No questions asked. I wish I could say this was a few bad cases but sadly this has occurred against a background of fatal discriminations against people with learning difficulties throughout the pandemic…

A culture of systemic neglect…

To illuminate the scale of this problem, we just need to look at the statistics. NHS numbers released last week show that since the third lockdown started, the coronavirus accounted for 65% of deaths of people with learning difficulties. Whatsmore, your more likely to die from the disease at a young age if you have a learning disability, with those aged 18 to 34, 30 times more likely to die than others the same age. Looking at disability more broadly, an analysis by the Office for National Statistics estimated that six in ten Covid deaths were of disabled people.

These statistics are of course disgusting, but the causes are all too apparent. First, the way the vaccine has been rolled out. In my end of year review for 2020 I praised the news of the vaccine as ‘amazing’ which of course it still is but I’m slow to praise the rollout as a unique national effort of complete brilliance. Much has been asked in particular about why people with learning disabilities are not on the priority list for the vaccine, when the figures are so staggering. Although some people, such as those with downs syndrome are in the top four groups to receive the vaccine, many are still waiting. This is in spite of the fact that research from the University of Bristol conducted before Covid found that on average, people with learning difficulties were dying 16 years earlier than people in the general population. This gap in the vaccine rollout to me speaks to two elements: a lack of knowledge about learning disability issues – we’ll get to that, and the fact that in focusing solely on the factors of age and severity, other factors like the environments people live in, were presumably not considered. I’m not saying that we shouldn’t have focused on younger people with learning difficulties – however, through simplistic, non complex ideas of how to roll out the vaccine, a vulnerable group of people faded into the background.

‘People with a learning disability have long been forgotten and discriminated against, and never more so than in this crisis…Ultimately the medical approach to the priority list is flawed and fails to consider a host of social, economic and health inequalities.’

Dan Scorcer, Head of Policy at Mencap

One of the inequalities that Scorcer is describing here is how hard it can be to communicate across quite rigid ways of thinking about who deserves the vaccine. This can be something as simple as being high priority from a purely technical point of view, but your GP not having precise details of your condition on record. This is something most disabled people have experienced in some form. There comes a point when your requesting support or benefits when you’ll likely need to phone your doctor and ask for confirmation on exact details on how your condition effects you, only to find that those records have been lost or don’t exist. Imagine that level of bureaucracy applied to a life or death scenario. Equally, if you catch Covid and struggle to communicate your symptoms without the help of a support worker, that might be just as threatening.

On top of that, many individuals with learning difficulties, whether told to isolate or not, have been completely cut off from society since March. Understandably, this has greatly affected thier mental health. I know as someone who is autistic that I rely greatly on my support networks and friends. This isolation mixed with the danger posed to people with learning difficulties by the pandemic, is a particularly toxic combination.

One of the biggest factors causing the higher death rate among people with learning difficulties is the care homes and often very small and crowded facilities disabled people are forced into living in. Psychiatrists like Dr Keri-Michèle Lodge point to the discrepancy in the fact that older people living in care homes were prioritized for vaccination, while people living in a similar settings were ignored. This is a core example of what I mean when I describe systemic neglect; these facilities often act as ‘storage functions’ for individuals who are deemed unable to be part of thier communities, often as a result of resource and support based neglect at a government level. During a pandemic, the level of support available to people living in those settings is cut, isolating and alienating them; Being crowded and small, Covid-19 spreads easily within these settings, creating a crisis that the individuals living within are even denied the vaccine for. If they end up contracting Covid, some of them risk being given do not resuscitate notices, devaluing their life even further.

Where this comes from…

We can’t view any of these problems in isolation. While the figures I’ve mentioned here are deeply unpleasant truths, from my perspective I can’t say that I’m all that surprised. When people talk about ‘Covid recovery’ they tend to think of it purely in terms of ending the pandemic when in meaningful terms it should include solving the issues that have been exacerbated by the current crises. The assertion that you saw in some memes and by some commentators, especially at the start of the pandemic, that only certain ‘vulnerable’ sections of society are affected seriously by the virus, works in practice as a call to “get back to normal” without solving the issues which increased the suffering of these communities.

One of these issues has to be the gap in social care. The vaccine prioritization question has highlighted how disabled people are very much left out of conversations around this issue. To illustrate this, consider the fact that the National Institute for Health and Care Excellence issued a clarification about people with a learning disability only after publishing guidance on using who may is appropriate for critical care. That was a huge mistake. In 2018 to 2019, 293,000 people aged 18-64 received council-funded social care in England, mostly at home, with 70% of them needing it because of learning difficulties. Currently, these younger adults account for around a third of all those receiving social care, and around half of all local authority social care spending. Considering this, its absolutely bizarre that disabled people have become something of an afterthought!

On top of that, we must improve standards of care and make it easier for autistic and disabled people to become part of thier communities. Last year, the CQC pointed to poor standards of care as a problem which exists in some hospitals. This can span from some staff not knowing how to speak to patients to issues stemming from under-resourcing. The shortage of specialist nurses is among the serious gaps in the NHS workforce. In a wider sense, benefits freezes and cuts to local services such as libraries have made it harder for people with additional needs to participate in social life.  In 2020, a review of 50 people with a learning disability whose death had been attributed to covid-19 highlighted how many of them had mobility impairments, and/or mental health needs. The author suggested that these factors may lead to an increased risk of covid-19—because of these people’s need for regular and sustained contact for support. The author of this study noted that: “these characteristics underpin prejudicial attitudes towards care, treatment and judgements about ceilings of care”.

The struggles around mental health and grief may be particularly prominent for people with a learning disabilities who now having the little autonomy some of them already have removed. Loss of contact with the outside world, an end to outreach work, struggles with employment. All of these are problems which existed before the pandemic. To neurodiversity activists the message is simple – if its a problem now, it will still be a problem after the virus is gone! On the issue of mental health, rather than trying to set up systems of care and support, individuals with learning disabilities are often inappropriately prescribed medication to control so called “challenging behaviour.” Similarly, people in ‘formal’ inpatient mental health settings are at risk of other restrictive practices, like physical restraint. Still, the pandemic has led to limits on visits by family and friends, heightening risk of abusive environments being created.

It can be said that the isolation and mental challenges that come with Covid are what many people with learning disabilities experience every day. What does getting back to normal mean, for instance, for someone living in an institutionalized environment? In my view, part of the response to the pandemic has to be not only lifting those who are disproportionately affected out of thier situation, but lifting up those who were left out of society to begin with.

An Atypical Perspective…

All of the elements I’ve pointed to across this blog post relate to how we value the lives of people with learning disabilities. In telling them that they won’t be resuscitated, in not prioritizing them for vaccines in spite of the evidence, in cramming them into isolating social care sessions, we are sending out a very clear message: you don’t belong. In that sense, part of all of this has to include combating narratives about who gets to be a member of society. We assume disabled people can’t be part of thier communities or are to frail to receive life saving treatment. With these ignorance’s existing in multiple areas of life, and at multiple layers of governance, we ‘disable’ people, cutting out thier means of support and creating a self-fulfilling image of these individuals: unsociable, constrained, withdrawn. That’s what’s meant by systemic neglect. Covid-19 has highlighted these issues starkly and frighteningly. Now we must respond by breaking the ableist cycle, and doing away with the stigma.

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