Disability Under Lockdown

Man wearing face mask

How are you coping with COVID-19?

2020 has been a difficult year for many. From the outset there were news reports of a mysterious coronavirus originating in China. Then we all watched as, one by one, countries went into lockdown. The coronavirus spread across Europe like wildfire, and at the end of March came the government announcement that the UK, too, was going into lockdown.

Although this announcement came as no big surprise to anyone, it would mean a significant change in lifestyle for many of us. A change which did not end after lockdown. New social distancing measures were introduced that continue to place restrictions on our everyday lives.

I wanted to know how those with a disability were coping during this time – many of whom are classed as vulnerable and who have been, or still are, shielding. What particular challenges have they faced? Has life become easier in some ways or harder? And how do they feel about the future?

What's coming is better than what is gone
Kerry Thompson
Kerry Thompson - Disability Campaigner and Writer
You are strong enough to face it all, even if it doesn't feel like it right now
Disability Campaigner and Writer

I spoke to Kerry, a disability campaigner from Milton Keynes who runs the popular blog My Life, Kerry’s Way. Kerry has muscular dystrophy and uses an electric wheelchair. She requires a full-time carer, who is currently her husband.

“To be honest, I’m scared. The thought that I could be shielding in my home for potentially years to come scares me. I’m a positive person, and I think I’ve been quite blasé about my condition in the past, but when I received the text back in March to say I’m on the vulnerable persons list, I’m not going to lie – I cried.

“I have only left the house three times this year, and when I did, people commented on how brave I was, and congratulated me for it. But I didn’t see what I doing as brave. What am I meant to say to that? Am I meant to say to able-bodied people, “Well done for staying indoors?”

“We have very few visitors, and when they do come around, they wear PPE, which we keep by the front door. My husband has a cold at the moment, so he wears a visor to protect me. Last time I caught a flu bug, I ended up in hospital with pneumonia. This is why I’m scared.

“Despite this, I know there are people worse off than me. I consider myself very lucky in that I live in a quiet area with a back garden, and I live in an accessible home. It scares me to think that there are vulnerable people shielding at home, confined to one room for all these months.”

Kerry’s fear is a sad reality for many disabled people. A new YouGov report commissioned by housing association Habinteg found that lockdown was considerably harder for disabled people in the UK due to inaccessible housing.

Kerry continues: “Being disabled, I feel like I have been training for this moment all my life. Because being disabled means that you are shut out, society is not accessible, and really what is going on now is just a more extreme version of that. You are marginalised by society, and I feel like right now we are more invisible than ever. Those who are shielding are being forgotten by the government. We are being told it is safe to go out, and yet cases are rising, especially in the North? It all seems very contradictory.”

I spoke to Susan Kendal, 49, who lives in Shrewsbury, to see what her view is. Susan has ME and uses a power scooter when she’s out and about.

“The lockdown brought out a sense of community spirit in my neighbourhood, which was lovely. People put rainbow signs up in their windows and flowers outside. Neighbours stood at the end of each other’s driveways to talk.

“I won’t lie – I have been scared of catching the coronavirus because of my ME, but I’ve tried to use common sense, which I do feel has gone out the window for some people. Luckily, I live in Shropshire, where the cases are not high. I’ve been staying indoors a lot more, and I’ve been relying on the internet more and more. I’ve been doing Zoom meetings with family, but I miss seeing them face-to-face.

“I’m lucky enough to be able to work from home and to be honest this has improved my life massively and made things more convenient for me. It’s true that being outside as a disabled person makes you feel like public property sometimes: the object of pitying stares and unhelpful comments. I don’t miss any of that. If I go to the shops I tend to go at times that are quiet. People are mostly following the rules but there are always one or two idiots.

“I do very much hope that life will go back to normal soon because this is making life hard for a lot of people, not just those who are disabled. My niece has just started university and is basically confined to her dorm every night. This is hardly the university experience she was dreaming of!

I asked Susan whether she agreed with Kerry’s statement that the lockdown was something she’d been training for her whole life.

“Oh yes, absolutely. Having ME means my life is already limited in some ways. I can’t be as social or go to as many places as I’d ideally like to. I can’t say my life changed all that significantly during lockdown. I only hope that, moving forward, we can all learn some lessons from this. We need to make the world more accessible for everyone. Disabled people should be able to work from home, when it’s good for their wellbeing and also for the environment. I hope we keep the community spirit that was being fostered. I’m starting to see it slip away and I think that’s a real shame.”

Kerry, too, has one last message for disabled people everywhere: “Being disabled, we’re strong, we’re tough. We have to be. I know we can through this.”