It takes a lockdown to give people with disabilities an opening
There are an estimated 13 million disabled and sick people in the UK, many of whom are housebound either permanently or from time-to-time - as their condition and/or support allows. So where has the guidance been for these people - other than on forums often hidden from view and effectively marginalised - before this pandemic?
Prior to COVID-19, I am not sure there were too many encouraging articles about how to survive isolation. The seemingly endless online resources which now enable us to feel much more connected were also less apparent. As for the concern about the mental health implications of isolation....well, in my view, that is something which I feel has rarely been given as much attention.
Thankfully the issues surrounding isolation and the importance of healthcare are now, one way or another, part of our daily conversations. Many people are having to experience enforced isolation and deal with the realities of a situation which, to the disabled community, is a way of life.
I remember my first prolonged period of enforced isolation when illness struck. It was a lonely place. I felt bereft. Everything in life seemed to have come to a halt. Time stopped. The days seemed endless. Yet I also knew that life still went on. I was aware that other challenges were coming down the track. Financial. Personal. And I didn't have the resources to deal with them. It's a time I have not forgotten. Nor will I.
With disability, we each live with the anticipation of loss. We learn to live with our chronic condition/s and get on with the rest of our lives. We learn to become used to not knowing how, or when, or if, or what, it/they might take away from us. Regardless of where we are on our journey with disability (and we all have our own, unique journeys to make) disability brings unpredictability. So although we cannot tell how severe our symptoms will be and how incapacitated we may become, we are as prepared as we can be.
We have already learnt a lot about how to deal with the changes disability brings. We live with uncertainty.
In a similar way, this pandemic is a reminder of what happens when there is an enforced lockdown. We can either fall back on our own resources or start building some (as this may not be the last time we face a period of lockdown in one form or another). With illness, things inevitably slow down and we have to be patient - and recognise the difference between what we can and what we can't change. Cue: lockdown.
This means reorganising, doing things differently, adapting. We can all enrich our lives in unexpected ways by revealing talents and interests we did not know we had (or are about to discover).
If we suffer a terrible crisis it is possible to transform this suffering into a launching pad to a new life. Cue: lockdown.
Rather than looking at it as something which is taking things from us, how about considering how it might enhance our lives in some way. Similarly, people like me can't control the fact we have a medical condition. However, we can take medicines, we can manage our condition and we can incorporate unexpected changes in our lives. Whether we are in enforced lockdown because of our disability or because of COVID-19, both can promote a heightened awareness of the fragility of life and the need to seize every single day.
When I was eventually able to get back out in the world, I saw things very differently. I had to find new friends (which I did); re-discover my inner resources (art and reading in my case); learn to slow down and relax (I sought professional therapy and learnt how to 'just be'). Above all, I had to find a purpose in life (which I did - I became a therapist). It took time, patience and determination.
In my own personal enforced lockdown, I learnt not to take life for granted and to find a new, less stressful path. I learnt self-compassion. Upon reflection, I am grateful for my crisis. Every now and again I can sense those dark days returning. Instead of ignoring the warnings, I listen to what my mind and body are telling me. As Jung wrote, "One does not become enlightened by imagining figures of light but by making the darkness conscious".
For many who are disabled, isolation has become a way of life and many of us have got used to weighing up the pros and cons to avoid putting our health in further jeopardy for ourselves as well as others. As part of the response to containing COVID-19, lockdown has shown that many people with disabilities are able to work and socialise from their own homes for the first time. The accessibility which new tech delivers is a great opportunity for those who may have resigned themselves to, for example, never visiting an art gallery again because their disability precluded it (check out the V&A museum website if art is your thing).
It seems to me that it has taken a non-disabled world to become more disability aware. Whilst few people would want this lockdown to go on longer than is necessary, at the same time it is giving more space for people with disabilities to get their voices heard and presence felt.
One of the empowering aspects of this near-universal lockdown is that people with disabilities can share their expertise. We can help those struggling in lockdown because we have learned to cope with such situations in order to survive and thrive. We can also dare to hope that lockdown can open up the chance for permanent accessibility for those of us who live with disability.
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