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Outside the spotlight: The human impact of COVID-19

Throughout this pandemic, national media has focused almost exclusively on how coronavirus has affected older people, and particularly older people in care homes. But the national lockdown and shielding measures have had a wider reach. We spoke to Shaun Webster MBE, human rights campaigner and contributor to Saba Salman’s Made Possible, to find out more about his experiences.

As we begin to enter the winter months, we know there were mistakes made in the first wave of COVID-19 that cannot be made again. One of these is the sidelining of people with learning disabilities.

Here, Shaun Webster MBE shares the impact this had on him and why it must be avoided in future.

Hi Shaun, thanks for speaking to us. Can I start by asking how the COVlD-19 pandemic affected you personally?

COVID-19 has affected me a lot because it made very lonely, isolated, vulnerable and scared to go out. And I lost confidence in myself in some ways. Some days it just felt like an effort to get out of bed. It was scary just going to get the bus because I’d heard that the virus was a death sentence.

Before the virus and the lockdown, I was going out to the cinema, going to the pub with friends, going for walks, seeing my friends and family. Lockdown was very difficult for me as I really missed my friends and family. I knew I had to stay in a lot because of my health problems – I’ve got asthma, type 2 diabetes, blood pressure issues and eczema. I missed having a laugh with my mates and us taking the mick out of each other. At times it felt like I was in jail, like I was being punished, because before all this I felt free as a bird. Since lockdown’s been lifted, I can go out, but I make sure I stay safe.

My working life has changed a lot too. Before, I was going into Leeds, seeing colleagues, having meetings and doing training, and when COVID-19 began, everything changed for the worse.

I’ve never worked from home before so it was a whole new ball game for me. I was very worried. I thought I might lose my job because I wouldn’t be able to do my work from home in the same way, so I was terrified. At home, I’d only used my phone and an old iPad. But I got great support from St Mary’s Hospital in Leeds, my employer, and they asked me what I needed to work from home – they ordered me a laptop and a folding desk. I got myself a new iPad and I got used to using WhatsApp and Zoom. It was difficult at first but over time I got more confident working from home.

How do you think lockdown affected support services?

I get part-time support from KeyRing, which is a housing support organisation. I get a few hours a week when I need it. COVID-19 means my support worker can’t come into my home so we do it all on the phone or WhatsApp. It can be hard too because it’s not the same if you can’t see your support worker in person.

I worried that lockdown meant I might not get any services to support me when I needed them. In the end, my support worker from KeyRing called me and explained to me what was happening and it did calm me down a lot. I asked her if we could use WhatsApp video because I like video calls better than phone calls; I can explain things better when we see each other on video.

I feel support workers and mangers find it very difficult and very challenging because the Government keeps moving the goalposts. They keep changing the rules and it makes it harder and very difficult to put the right support in place to support people with learning disabilities and autistic people.

The media spoke a lot about how care homes for older people were affected. How did you feel about this?

I feel the media focuses too much on services for older people and we need more focus on other types of services for people with learning disabilities and autistic people too. What gets me angry is that the media don’t understand people with learning disabilities and autistic people and we always get forgotten.

People with learning disabilities and autistic people never get a look in and, to me, the Government and media aren’t interested. I feel that because of this focus only on older people, we’re suffering, because we feel forgotten and no one’s bothered about that. It is a human rights issue and we saw during COVID-19 that learning disabled people were dying because they weren’t getting proper care.

It’s very important to be included in everything about the virus because a lot of the time people with learning disabilities and autistic people don’t get enough information and support about COVID-19. It feels a bit ‘last minute’. It’s not good enough and it affects people’s mental health big time.

You mentioned that you’re working with a hospital in Leeds. Could you share some more about this project?

I’m doing some work with St Mary’s in Leeds and the people they support about their experiences under lockdown. I’m making information accessible about the latest rules from the Government on lockdown.

I’m talking to people about their experience – good and bad – living under COVID-19 and lockdown. We’re working to make a leaflet. The aim is to produce clear, easy-read and accessible information about coping with lockdown and the rules about what you can and can’t do.

What tips do you have for other people to help them cope with life during COVID-19 as it carries on?

I’ve been talking about to my family and friends about keeping busy and coping with life during COVID-19 and I’ve got lots of tips.

My mother told me when the lockdown started she was finding it very difficult, stressful and boring. She told me she’s doing gardening now and said it keeps her very busy and happy. So, my first tip is if you like doing outside things try gardening, as it’s good for your wellbeing and mental health.

A second tip is from one of my friends who told me always keep yourself busy doing housework. He’s been painting the walls in his room and he told me it keeps him busy and makes him feel more relaxed when he paints and listens to music.

My third tip is from another friend who told me he’s listening to audiobooks and music that keeps him relaxed and his mind busy.

Another friend told me he is keeping busy watching films. I’ve been watching TV on YouTube, Netflix and Amazon and playing quiz games. I listen to audiobooks and music and use WhatsApp and Zoom to talk to family and friends.

l’ve also been working from home. It keeps my mind very busy and stops me having mental health issues and stops me getting down. Working from home has been a lifesaver. If I wasn’t working, I’d be really bored and I’d be getting stressed.

Life is better now because we can go outside and go for walks and go food shopping and see some friends. I also go to a friend’s house on a Friday but we keep apart, or my friend will come to my house. But you always need to make sure you have to be two metres apart with a face mask and that you understand the rules to keep safe.

How safe do you feel day-to-day now?

It’s so much better now things are starting to be a bit more normal and I can do things I need to do, like food shopping and paying my bills. Of course, I make sure I keep two meters apart from people.

Now I’m going out more I don’t feel so depressed about things. I’ve started going back into work at St Mary’s for a few hours a week outside of the rush hour. I feel very safe now and more confident in myself because I can go outside more for walks just round the block or out to the woods to get some fresh air and it clears my head.

Shaun Webster MBE is a human rights campaigner and a contributor to Made Possible: Stories of success by people with learning disabilities – in their own words, edited by Saba Salman, published by Unbound. Twitter: @mbeShaun

Does Shaun’s experience resonate with you or anyone you know? Share your thoughts in the comments section below.

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