In 2019 Policy Lab undertook research into the lived experiences of disabled people, capturing on film the everyday lives of a small and diverse group of disabled people from across the UK. We returned to these participants for a second wave of research in the summer of 2020 to see how they were affected by Covid-19.
We made some short films from the pre-pandemic research to raise awareness and improve understanding of disability on social media. One of our participants, Donna is our guest-blogger and talks about her experiences below.
How I got involved in the filming
Scrolling through emails at work one day I came across one about research involving disabled people to help shape policy. I'm all for educating people about my experiences as a disabled person. Education is key. How can people understand what it is like to be a disabled person otherwise? I just knew I had to sign up.
Being a part of the research was an enjoyable, yet tiring, experience. It was challenging at times especially when looking at the tough side of living with a disability and the problems that brings including medical procedures, people’s perceptions and the processes faced to get the support that’s needed to live life.
What the film meant to me
My favourite part of the research was being filmed for the day. I love talking and don’t mind being filmed whilst doing it. I wanted to show what life is like for me, not for pity, not for those inspiring comments but to show that having a disability doesn’t have to mean an end to having a life. For example, I can still work, and get paid for it!
I can drive, have a home, a social life. It was important to me for people to have that insight. To see what a disabled person can do with the right support and equipment in place. For policy makers to see that the changes they make are life altering, even life enhancing. If done well, in collaboration with disabled people, policy making and changing can give us an equal shot at this thing called life, after all isn’t that what we all want?
The COVID-19 pandemic
Life altering is a good phrase to sum up 2020 and the year ahead. How life has changed beyond recognition. I found it stressful, that week commencing 16 March 2020, when we were told to social distance from one another – my worst nightmare had come true. You see I'm a people person, I thrive on human interaction and contact. To be told I could no longer do that brought stress levels sky high. All that week I felt like I was living in a film – a film I had not been asked whether I wanted to participate in.
I asked myself questions like, how will I get food? Will there be any food left on the shelves? How will I cope living on my own? There were so many unknowns. The ironic thing is that before lockdown, on some days I would leave home for work wishing I could just spend a day at home. And there we all were on the 23 March being told just that – stay at home.
Once that announcement had been made I felt better and my stress levels went down. I now knew where I stood. Little did we know that nearly a year on we would be in lockdown once again.
How my life has changed
How grateful I have been for technology. Whatsapp videos, Zoom, Skype – who knew there were so many online platforms to use? I have never been more grateful for my friends and family. We kept each other going. I rediscovered my love for writing letters and sending little gifts through the post – not only was it for the recipient but it was a way for me to cope with the many restrictions being placed on us. I wrote a weekly plan that kept me sane, and it made me feel safe even if I didn’t stick to it.
I work at the Centre for Independent Living Kent. Our work supports the uptake of Direct Payments and Independent Living for Disabled People living in the community. 2020 brought major changes to the way I work – no more face to face client visits, no more clocking up the miles in my car. It was, and still is, done remotely. It’s just not the same. In spite of all this, there have been some silver linings.
A garden which had been neglected all the years I have lived here has been brought to life, hope has been restored. A space to go and be. The piece de resistance is a summer house taking pride of place in my garden which has been converted into my very own office. Amazing. A cosy space to work, I have reclaimed my house back, I’m no longer using it as an office.
Life has changed beyond recognition but the human spirit and drive have risen. I have found a strength inside, my faith has helped immensely, which has carried me through. I'm hopeful for what the future holds. We will never forget Covid-19.
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