Understanding The Risks
Content warning: This post contains descriptions of medical and social risks affecting disabled people that you might find distressing.
I got a call from my local Council’s ‘COVID-19 Support Team’ today. They were checking in with me because I’m one of the 2.2 million people who’ve been identified as ‘clinically extremely vulnerable’ to COVID-19-19. I’ve been shielding for the last four months but this is the first check-in I’ve had. The call was brief and mainly focused on the end of the shielding scheme which is happening in a few week’s time.
This post isn’t so much about the rights or wrongs of ending shielding, it’s more an attempt to make visible some of the risk factors and issues that the shielding scheme has missed. I imagine these will be things that many non-disabled people probably won’t be aware of.
I get that this situation was unexpected, and that the list was put together at extremely short notice, but by taking only a medical approach and ignoring the many organisations and disabled people tirelessly raising issues from the outset of the pandemic this can no longer be dismissed as an oversight.
I’m going to describe some of the risk factors disabled people may experience during a pandemic, recognising that most people will have more than one. I’m doing this to bring to light issues that have left many people unprotected and unsupported in the hope that should we need to take similar action again, fewer people at risk will be missed.
I’m going to split the risks into two main categories – ‘Virus-Related’ and ‘Non-Virus-Related’.
(This Drawing describes the risks affecting disabled people in a time of pandemic – the yellow circle around virus related medical risks indicates that this is the only area of risk currently considered.)
In each of category I’ll describe the ‘Medical Risks’, those that are directly related to health, and the ‘Social Risks’, which may have an impact on health but may also relate to wider safety, wellbeing, and participation in society. Let’s start with risks specific to the virus first.
Extra medical susceptibility to the virus – This refers to everyone who has a pre-existing condition that means they’re more likely to become really unwell if they get infected. The difficulty during this pandemic, particularly at the beginning, was that no-one really knew who was most susceptible. At the start of lockdown 1.5 million people were classed as ‘extremely clinically vulnerable’ and were told to shield. This was then reviewed. Some people were taken off the list and many more were added – including me. There are about 2.2 million people currently on the Government’s extremely clinically vulnerable’ list, and there are many people with increased medical susceptibility, either through age or pre-existing conditions, who are not included. Medical susceptibility was the only risk factor our Government considered, and even this was incomplete.
All the other risk factors I describe from here on have not been taken into account by the Government in any formal or consistent way.
Social susceptibility to the virus – By this I mean people who have a pre-existing condition, access requirement, or circumstance that makes them more likely to be exposed to the virus. For example, this includes people who are blind or partially-sighted and therefore need to touch more surfaces and objects than a sighted person. Or someone like me who requires close physical support to undertake everyday tasks and can’t socially distance in the same way as a non-disabled person as a result. These risk factors would also apply to someone whose job is high risk or who is living in overcrowded housing.
Risk factors around how likely someone is to be exposed were not considered when putting together the shielding list. This matters because it has a knock-on impact on what assistance someone can access. For example, blind and partially-sighted people were not included in the shielding group, which in turn meant they were not prioritised for online shopping and food deliveries, even though they couldn’t shop safely in store. There are 360,000 people in the UK registered as blind or partially-sighted and this is just one example of a social risk factor.
Off the top of my head, other disability-related social risk factors include: those who don’t understand social distancing due to learning disability, people with touching tics or compulsions, Deaf people who’ve been denied access to information about COVID-19 and how to stay safe because this information hasn’t been shared accessibly, or people with conditions that require very regular trips to hospital. This starts to give a picture of how many people have been left in potentially vulnerable situations without appropriate support.
So far, I’ve looked only at risk factors that relate directly to the virus – how sick you might get and how likely you are to catch it. Now I’m going to focus on all the non-virus-related ways disabled and neurodiverse people might be at extra risk during this pandemic. I’m only going to highlight substantial risks, so this post doesn’t turn into a book!
Medical Risks (Non-COVID-19)
The virus is one of the things that can make someone really sick, but there are many other ways that it might be putting disabled and chronically ill people’s health at risk. For example, for me, as someone who experiences chronic pain, not having access to physio or hydrotherapy during lockdown has meant I’ve been in a lot more pain, and this has had a knock-on impact on other areas of my health. A much more serious example of the impact of COVID-19 on medical care has been on home ventilator users who were denied replacement filters for their machines because these were being saved for those with COVID-19.
Examples I can think of include someone with memory issues having to go to an appointment alone because of changes to visitor policies or D/deaf people not being able understand what healthcare professionals are saying because of a lack of access to interpreters or because masks make it impossible to lip read.
This virus is new and is having a devasting impact, but it’s important not to overlook other issues affecting our individual and collective health.
Social Risks (Non-COVID-19)
As with the virus-related risks, there are also many reasons why disabled people are at increased risk during this pandemic. Overnight, the way our society worked changed, and therefore the barriers that disabled people faced changed too. The most serious of these affected access to food, access to information, access to support, financial stability and an increased risk of violence. I’ll describe each very briefly below.
Access to food – Only those on the ‘Government’s shielding list’ received any structured help with getting food. For all the reasons described above this represents only a fraction of those at serious risk. It has recently been reported that a disabled man starved to death in London during lockdown, and that’s devastating and shocking. I strongly suspect he will not be the only person to have been so fundamentally failed in this way.
Access to information – Timely, accurate information about what’s happening in a format you can understand feels like a reasonable expectation. Sadly, many disabled people have been denied this. 150 British Sign Language (BSL) users have launched a legal action against the Government after they refused to provide interpreters during the daily briefings. This was provided in many other countries, but English leaders refused to provide it, denying Deaf people access to vital information. And Deaf people were not the only ones overlooked when it came to providing information in accessible formats: the Prime Minster sent a letter to every household but failed to make it simultaneously available in easy-read form for learning-disabled people or in a tactile or audio format for those who are blind or partially sighted.
Access to support – The social care system has been underfunded and neglected for years, which means its resilience and responsiveness in times of crisis are severely compromised. It’s almost four months since Lockdown started and I’ve still not received any PPE for me or my support workers from my local authority or health teams and we’ve had to source what we can privately. Many disabled people and their families have tried to manage without formal support during the lockdown in order to reduce exposure to the virus, but this can put extra pressure on families. My sister, who’s a doctor, said that as lockdown started to ease there was an increase in patients with more serious medical problems because they’d put off coming into hospital earlier. I imagine there might be a similar situation with social care, with families hitting breaking-point after months without help. We need proper investment in high-quality social care to reduce these risks.
Financial stability – Many people are struggling financially as a result of the pandemic, but disabled people are likely to be additionally affected in two key ways. Firstly, the extra costs of living as a disabled person in a non-accessible world are calculated to be about an extra £570 per month. As barriers have increased it’s likely these extra costs have increased too. Secondly, disabled people might need to work part-time or in patterns that don’t easily fit with Government schemes. For example, many disabled freelancers might not meet the threshold for accessing the self-employment support scheme. Financial support packages were provided quickly but with only very normative circumstances in mind, and this makes it more likely that the financial requirements of disabled people have been overlooked.
Risk of violence – At a time when many people are extra-vigilant or anxious, non-normative behaviour can quickly attract attention and lead to hostility or violence towards, for example, people with Tourettes who have coughing or touching tics or vocal tics that relate to the virus, for example: “I’ve got COVID”. Pre-COVID-19 research has shown that disabled people are 3.5 times more likely to experience violence than other people. In these times of heightened pressure and reduced services this risk will almost certainly have increased.
If I was risk assessing myself, I’d look at each of the four areas above to get a more accurate idea of my risk factors.
Hopefully we won’t need to take similar action again but if we do, I hope we can learn from the experiences of sick, disabled and older people during the last few months, so that any future schemes are more inclusive, effective, equitable and humane.
If there’s a second spike of COVID-19, or when other viruses reach us, the authorities must have available solutions to the additional barriers faced by disabled people – missing these once might be understandable, missing these again would be completely negligent.