Stories from the capital’s disabled people
The COVID-19 pandemic of 2020–21 has shone a spotlight on our society. What we did and the way we did it changed almost overnight and uncertainty became the new normal. Many of us were not used to not being able to go out when we want, or having to ask ourselves whether we would be able to get our essential shopping. We had to rethink what was appropriate behaviour in public – how far can I lean over to grab a carton of milk without making my fellow shoppers feel uncomfortable? For many of us we have seen our anxiety rise. Health was perhaps something that we took for granted most of all.
Many of the challenges and barriers we had to grapple with for the first time were not too dissimilar to the challenges older people or disabled people have always been faced with. For people with physical disabilities, going to the theatre could be problematic or not an option at all if the venue was not accessible to them. People with hidden health conditions can worry about catching something on public transport and falling ill or feeling anxious when outside. Getting an online delivery slot can be a challenge when you didn’t grow up with technology or are living on a small budget.
Social rules and behaviour can also be difficult to understand for someone with autism disorder. The same way society was not designed for a public health crisis, society is often not designed with an awareness of people’s different health conditions. We wanted to know: how did the pandemic affect those who already felt disabled by their environment?
We wanted to know: how did the pandemic affect those who already felt disabled by the way the world around them was set up?
What did we do?
During December 2020, the Research Institute for Disabled Consumers worked with 20 disabled people to record their experiences living in the UK’s capital city, through the country’s third lockdown. Funded by the City Bridge Foundation, the study offered a unique insight into the often less visible experiences of disabled people in London at a time in crisis. Participants with a wide range of disabilities (blind and partially sighted, cognitive and physical) all who live in London were asked to keep a digital record of how life had changed for them as the city entered its third lockdown. Some recorded a video, some left audio messages, others shared their experience and had discussions on an online forum or participated in a focus group. These were collated into a series of short stories that provides a window into the daily experience of disabled Londoners.
A bit like receiving a postcard from another land.
One captured ‘postcard’ is from a video diary, where a research participant just pointed the camera out of the window and we see the traffic outside slowly pass by as she explains her experience of feeling more and more trapped inside and how it is affecting her. This video lasts five minutes nineteen seconds.
‘Before I used to not really want to go outside anyway, but I had to go outside so I would. And even that was scary using public transport to get places. I knew that I would always have staff around me. I knew the rules to follow. And I could follow them. And now that has all changed. I didn't know what rules to follow, when to follow them or how to follow them. And they were changing them almost every day, it seemed.’
Another 'postcard' can be seen in this clip when a research participant had to go to her local bank to set up an app. This video lasts two minutes and eight seconds.
What did we find?
We learnt that for some, a shift to life online has brought new friendships and connections, whereas for others it has isolated them further. Where going outside or receiving care was already difficult, COVID-19 has often made it even harder. For some there is more support in communities, yet for others it has become harder to find help or offer it to others.
The main narrative of these stories is not about how older and disabled people have become more vulnerable because of their disability. Neither is the narrative that people have become more vulnerable because of the pandemic.
The main narrative is, people have become more at risk during the pandemic because the lose threads of our our society’s safety net were pulled apart.
The changes to our ‘normal’ have temporarily made disability more visible, in all its invisibility.
Listen, think, talk
When we listen to these stories we can all empathise. The challenging part comes next: what do we do with what we know? Now that restrictions are easing and the world slowly is opening up again, it is a good time to reflect on these stories and understand what we can learn. With an awareness that society already had much to do to improve accessibility before the pandemic hit, we have an obligation not to leave it an even less accessible place afterwards. As we are re-thinking our new normal there is an important opportunity here to realise a society that is more inclusive and in which people with disabilities are part of conversations as they happen and not after the fact.
With these stories, RiDC is aiming to enable the (dis)able(rs) - whether that is someone in government, businesses or individual members of the public, by asking people to pause, reflect and act. These stories are an invitation to listen, think and then start a conversation about a plan. Within each of these stories hides an important question that requires our collective problem solving. We think answers to these questions are something we would all benefit from, at any time (disability or not, pandemic or not). We hope they will act as conversation starters for curious conversations and innovative solutions.