I have been wanting to write about coronavirus and disability for some time now but every time I tried to think about it, I got too angry and frustrated. Hopefully I am now emotionally ready, we will see!
Obviously coronavirus is horrible for everyone. It is deadly and even if you haven’t had it, your life has been significantly changed because of it. There are loved ones you haven’t seen, holidays you haven’t taken, celebrations that haven’t happened. But for many disabled people, coronavirus comes with a skip full of additional worries.
- If I get ill, will I be treated the same as someone without a disability given there is a shortage of ventilators?
- How will I get food if I am disabled but not vulnerable enough for the government’s very strict list?
- What happens if I need routine but essential treatment?
- What do I do if I am asked to go back to work but don’t feel it’s safe for me and my disability?
If you have been paying attention to the news, you may well get the impression that there are no disabled people under 65 and that everyone with underlying health conditions are over 65. Younger disabled people are being forgotten. There are articles about grandparents desperate to see their grandchildren for a hug, but where are the reports about shielding twenty-somethings desperate to see anyone at all because they’ve been alone for months.
As the government shielding list is excruciatingly tight, many people, myself included, have decided to shield because we know our health risks and are vulnerabilities. Just because they don’t fit nicely into a governement tick box, does not mean I am going to endanger by life. There are also many people who cannot leave the house for other reasons, or can’t leave without care which may not be available now. This means that unlike most of the population, a lot of disabled people aren’t going out for exercise and fresh air.
Further, not everyone has internet. A survey by Glasgow Disability Alliance showed that only 37% of people said they had broadband at home. This means that they are not socialising online, they are not taking part in family zoom calls and they are not joining in with games on the house party app.
The mental health impact of not leaving your home, of not seeing other people and of not socialising in alternative ways such as online is significant. If you add in the additional concerns that people with disabilities have around the pandemic, you have a very serious threat to health and wellbeing. Twice as many disabled adults as non disabled adults felt that coronavirus related concerns were making their mental health worse. That is significant.
A higher proportion of disabled people than non-disabled people were worried about the effect of the coronavirus pandemic on their well-being (62.4% for disabled people compared with 49.6% of non-disabled people); their access to groceries, medication and essentials (44.9% compared with 21.9%); their access to health care and treatment for non-coronavirus-related issues (40.6% compared with 21.2%); and their health (20.2% compared with 7.3%) in May 2020.
– The Office of National Statistics
My own experience with groceries, medication and health care has thankfully had issues that we have been able to reconcile eventually. I don’t eat much orally so grocery issues were limited to concerns about toilet paper. With medication, my carers have a good relationship with the pharmacy and this has helped significantly. Having carers has been critical here and I have been incredibly lucky that my care provision has not been impacted.
I also needed my feeding tube replacing which was complicated. It needed doing urgently but was not yet at emergency stage – it was an emerging emergency! But various people within the NHS system interpreted it as routine, which it would have been if routine operations were being done. In the end there were a lot of phone calls until I finally managed to get someone with a bit of power and a bit of common sense. What should have been a standard appointment ended up with me and my carer sat in a room in the hospital for the entire afternoon but the tube got changed in the end. In between all the calls, I was anxious and worried – if my tube completely broke, and it was getting close to that, then I would have been rushed into hospital as an emergency for an unplanned procedure.
I wanted to touch on my experience, even though it’s not been too bad, to give some humanity to the statistics. These are real people, real concerns and real lives that are being affected.
I mentioned that my care has been stable throughout this and I know I am very lucky in that regard but 43% of people in an RIDC survey said that they were no longer recieving visits from personal assistants. Many other disabled people are relying on friends and family instead of their usual care and this may be why 33% of disabled adults are feeling like they are a burden on others (compared to 11% of non disabled adults, ONS).
Those people who directly employ their carers have had to face many obstacles including what to do if the carers get sick and how to source precious PPE. Guidance was slow to appear and confusing at best. It has also left many disabled people who have carers or personal assistants, having to source and pay for their own PPE.
Further, the Covid 19 Act made changes to what local councils have to do for disabled people. On the face of it, the aim was to free up resources to allow local authorities to prioritise care, however many disabled people are concerned about the potential loopholes it provides. Local authorities are already very stretched and as such it is incredibly difficult to get the care you need to thrive, rather than just survive. I worry that these loopholes will be used to minimise care provision and then, going forward, that people will be told they were ok on reduced care and therefore don’t need what they have been assessed for.
There is so much here that I cannot cover. This is already a rather long post and I have not touched on the specific impacts on visually impaired and hearing impaired people, or people who are neurodivergent or people with learning disabilities… You get the idea!
Just to give you a flavour of the issues and concerns at play…
- There was no BSL interpreter for England’s daily briefings with the government citing social distancing concerns, even though Scotland and Wales made it work
- 134% more disabled people with learning disabilities have died during the Coronavirus crisis than is statistically normal
- Street layouts are changing to allow for social distancing but that currently means York is losing blue badge spaces and is making things more difficult for visually impaired people.
And if that wasn’t enough, in the past, many disabled have been told that their reasonable adaptations for work, such as being able to work from home, are not workable. Coronavirus has revealed that we had the technology to make it possible, but not the will. This has been a bit of a kick in the teeth…
Similarly, lockdown meant suddenly everyone realised they could have events online. I have ‘attended’ so many talks and courses and conferences that would have been inaccessible to me if they hadn’t moved online. If I am out and about I use my energy up so much faster than when I’m at home and so I’ve been able to do so much more. I am really hoping that blended talks and courses are the way forward allowing people to participate in person and online.
RIDC – Latest research into the impact of coronavirus on disabled and older people
Inclusion London – The impact of covid 19 and the government response on disabled people
Inclusion London – Access to Work issues arising from covid 19
Inclusion London – Coronavirus and the social impacts on disabled people
Coronavirus and the social impacts on disabled people in Great Britain: May 2020
Disabled News Service: Disabled people have been excluded and marginalised
Scope: We won’t be forgotten
Edited to add: Inclusion London’s report Abandoned, Forgotten and Ignored