How being disabled prepared me for the pandemic
Ruth is a recently retired teacher with CP and Perthes’ disease, a condition that affects her hip. You can follow Ruth on Twitter here.
How being disabled prepared me for the pandemic
At the moment it seems as if the world is awash with articles titled things like:
- ’15 Ways to Love Lockdown’
- ‘How the Pandemic Has Shown Me What Matters’
- ‘What the- First Lockdown Taught Me (and why I am going to do it differently this time) ’.
It feels as if they are stating the obvious and that is because I am disabled. The truth is, I haven’t really learned from the pandemic. Instead, the past 50 years have prepared me for it.
I am at increased risk of complications, if I contract Coronavirus, but not enough to have made it onto a Government list. I am ‘vulnerable’ but not ‘extremely’. This means, that, aside from a priority flu jab, I have navigated the last eight months without official support. It is not my first experience of ‘not being disabled enough to qualify’ and it will, I am sure, sound familiar to many who have embarked on applications for disability benefits, priority seating or a Blue Badge.
What the pandemic has done is bring into sharper focus how poorly-understood my disabled life is. It has labelled a community of resourceful, adaptable, valuable people at best as helpless and, at worst, expendable. The assumption is that I am a burden, not that I have responsibilities. When, in March, I spent most of a day pressing redial to secure a place on a priority list for supermarket deliveries, it wasn’t for me, it was for my parents. It proved impossible to have a second slot for myself because the system couldn’t cope with the idea that I was shopping for them but also needed one.
Coronavirus has undoubtedly brought much uncertainty but, like many disabled people, I am used to my lifestyle being precarious. I may have worked full time for more than a quarter of a century but, throughout, I was only ever one unpredictable muscle spasm away from having to take the day off and one unsuccessful surgery away from losing my much-loved career.
I know, from experience, that I cannot rely on my health and mobility. I can be optimistic, proactive in staying fit, seeking treatment and adapting my environment but these things may not be enough, or even available to me. Like the times I have had to decide whether to have surgery, I weighed the evidence, benefits and risks and decided to shield. My lockdown existence may be pretty familiar to me but that doesn’t make it easier; I still have feelings of loss and frustration. However, I know what is at stake: not just my life, but its future quality. I know that I don’t want to sacrifice what I currently have for a meal in a restaurant or some socialising. I can wait, not because I have had lots of practice, or because I didn’t have a lot happening anyway but because I understand the potential cost of impatience.
Shielding is one of a number of times in my life when I have been mostly isolated at home for a long period and, now, as then, there have been lovely moments:
- Skype baking with friends
- online access to theatre and exhibitions
- wheelchair work-outs
- and a lot of cross-stitching
currently sewing my Christmas cards. It may sound like I am jumping on the
recent crafting bandwagon, but my choice of hobby was made four decades ago,
influenced by my impairment. It is mostly one-handed, can be done seated when
tired and, for someone like me with not very good visual processing it is
almost magical when my counting leads to an image emerging from the fabric. I
also cannot deny that, like the many restricted women of the past, the
opportunity to repeatedly stab a piece of fabric, whilst appearing serene, is a
But how can I just think about crafting and baking now that I know the (shocking but unsurprising) statistics for Coronavirus deaths of disabled people? In March I found myself compiling a list of arguments why, if admitted to hospital, I am a good candidate for ventilation. It remains ready. I am sure that there are those who would insist that I was being over-dramatic but I suspect they won’t be disabled. I didn’t make the list because of a recent news clip or Twitter discussion. I made it because a doctor asked my parents, before my birth, how much they wanted a potentially ‘damaged’ child. I made it because one of my earliest memories is of my GP telling my mum that she was being over-anxious about my health because of my CP. In fact I needed urgent treatment for an unrelated condition. I made my list because, when I needed a hip-replacement, I had to fight for it. The NHS is one of the most wonderful, and frustrating, things in my life. It’s the reason I am alive, and not bankrupt, but I have learned not to place myself entirely in its hands without first doing some preparation.
What are the most important factors in me not having Coronavirus so far?
Media coverage might indicate that these are that I have stuck to the rules and not visited anywhere busy or indoors. This is too simplistic. The real reasons are because I own my own house, have a secure retirement income, am internet savvy and have a partner who drives and can work from home. Were I still teaching, single, relying on public transport, job-hunting, a parent of school-aged children, insecurely housed or poorer, I would not be able to choose my level of risk so easily.
In spite of the last months, I am determined to be hopeful about the future. What the pandemic has shown me, and not for the first time, is how hard disabled people will need to fight for our place in that future.