Podcast: Isolation and coronavirus

Transcript

Cathy Lynch: Hello and welcome to The Disability Download. The Disability Download is brought to you by pan-disability charity Leonard Cheshire. I’m Cathy Lynch.

Erin O’Reilly: And I’m Erin O’Reilly and on this podcast, we respond to current topics, share stories and open up conversations about disability. 

Cathy: We’re bringing this podcast to you from isolation over Skype which is very timely since the topic of this month’s podcast is self-isolation and coronavirus. For people who have a disability and long-term health conditions, going into isolation isn’t always that simple.

Erin: Yeah and I think our guests on the podcasts discuss their experiences of self-isolation and talk about how the coronavirus has affected their everyday lives from personal living space, right through to businesses and work. 

Cathy: So we’ve spoken to Josh Wintersgill, winner of the 2019 Stelios Award for disabled entrepreneurs and Jaime Woods, a Community Manager and fan of the show about his experience of lockdown with his family.

Erin: And you might remember Sophia, who we interviewed in our last podcast on the ‘Disabled Looks Like Me’ campaign about her thoughts on coronavirus and disabilities, particularly those who have non-visible disabilities and long term health conditions. And then finally we hear from writer Chloe Timms who shares her thoughts on living and writing in lockdown. 

Cathy: First up we speak to Josh Wintersgill, one of our ambassadors who won the Stelios Award for disabled entrepreneurs last year. We spoke to him at the end of March, just after we’d gone into full lockdown. Here’s what he had to say:

Cathy: So I’m here with Josh Wintersgill, Josh can you talk us through what your experience of self-isolation has been like so far in the current lockdown situation we’re finding ourselves in?

Josh: Yeah so self-isolation for us I think if I speak for the disabled community generally, a lot of us are relatively self-isolated you know more often than not with our conditions really, so I think from a self-isolation point of view we kind of have a reasonable experience of it.

I think what was interesting with coronavirus is obviously the impact that it’s having on people’s health. This is something that could kill a quite lot of us if we catch it. It kind of, this coronavirus picked up quite quickly a lot of people believe it just comes from China and they had it in December and then all of a sudden we’re in the middle of March its in England and now it’s really hit home oh my god the virus is here and it’s picking up momentum and more people were being infected with it day by day and now it’s like oh I actually need to do something, I need to get home and I need to look after myself and you know, what have I got to do.

You know, I live in a shared house with my sister, I’ve got a lodger and my sister has her boyfriend coming and going, I’ve got my girlfriend coming and going. I have three carers coming in and out of the house every day, it’s like oh my god you know how do I self-isolate when I’ve got so many people around me? One of which works in a care home as well, and so like this fear of having six or seven people coming in and out of your house every day is like oh my god, what do I do?

So when it started getting serious, I was away on a shooting camp with my carer and we were sort of joking around at the time and a lot of us were and we didn’t appreciate the severity of it and towards the end of the camp the camp got cancelled and we were forced to come home and it wasn’t until I got home that I started thinking oh god what am I going to do? 

You know, do I put measures in place with my carers and my sister was freaking out she was like oh what are we going to do? We can’t have you catching this virus and I spoke to my family and my family said to me they go “Look, it’s probably best for you to move home and come back and live with your Nan”, my Nan is 74/75 and she’s vulnerable anyway but she’s fit and well enough to look after me, she’s done my care since I was a child and so she lives on her own, it’s isolated we’re lucky enough that we can go out for a walk and not bump into anybody. There’s ground around the area.

 For me it was a no-brainer to move back home but what I’ve had to do is sacrifice my shower at home. I’ve had to sacrifice the toilet, so I can’t have a now shower for the next three or four months  so I’m having bed baths here at my nan’s. Going to the toilet, I can’t go to the toilet because I can’t go into the toilet so I’m having to go into a bucket and it’s all these things you have to do in order to protect yourself.

My whole problem with this isolation stuff is for people that are in my situation, rely on carers coming in and out of the house, not everyone is fortunate enough to be able to move back home and be looked after and they do have to depend on the carers, the care agencies, the local authorities and it’s actually quite frightening that for me personally it felt like they didn’t move quick enough to put the measures in place on how people should self-isolate.

It took too long. In my eyes I only saw what I had to do last week, oh no sorry it was the beginning of this week where the local councils actually had guidance and advice on how to stay protected at home and what you needed to do with carers, masks, hand hygiene. You know all of this stuff is completely new to the lot of us and it just didn’t come out soon enough and it was very very frightening.

I just feel sorry for people that are out there and are relying on these other services without family and support networks that are just stranded and its hard and this is where I sort of think our community in the UK is really good because we get a lot of people willing to volunteer.

My Nan had somebody come up the drive the other day and put a letter through, it was a telephone number and support so if we need anything being collected or, you know food or any of those essentials that we’d just have to phone up and order it or just drop it off and that’s fantastic but not necessarily all communities are like that. And it’s great if you’re vulnerable and have underlying health conditions where you don’t have that support network.

We need more and more people like that who are going to come out and help us so it’s going to be a quite a testing time but you know, yeah it’s very strange this self-isolation, sacrificing all your home comforts to come here, you know knowing that chances are you’re probably not going to catch the virus being here so it’s that trade off isn’t it of short term sacrifice for all of these luxuries that you have at home to stay safely isolated and to not catch the virus and to hopefully live a full live afterwards.  

Cathy: Where do you see attitudes moving towards after this period of self-isolation is over?

Josh: It’s quite simple, I think people will appreciate the democracy we live in, you know you don’t appreciate the independence and the freedom that we actually have in our society here and it’s until something substantial like this happens that you realise how just going to shop to get some essentials that you do every day, you don’t appreciate until something like this happens.

Our attitude to appreciate what we have in day to day life will completely change that’s not just an individual family level, but I think the way we live globally will change and I think people’s perceptions of viruses will change and how we keep ourselves hygienic will change.

I think we’ll see a community now that will be probably come together more vocally in person rather than social media. I don’t know, I’m in the travel industry and I think it’s been hit for six and I don’t think that will ever be the same either. 

Cathy: Yeah, that kind of moves onto my next question because you’re a business owner and self-employed, you won the Stelios award for disabled entrepreneurs and through winning that money you’ve expand your business and you sell accessible travel seats to airlines. What’s the effect that Coronavirus has had on your business and in the travel industry in general?

Josh: If we start with the travel industry first. 

Cathy: Yeah.

Josh: Everybody has been affected, whether it’s the airlines to the ground handlers, to the taxis who do the taxi runs airports to shops in the airports to everybody that supports who has a business in the travel industry has fundamentally been affected.

For me, myself and our business, it has been affected massively we’ve had a huge decline in website traffic and sales, either they were travelling and are not travelling or another thing with why we’re not seeing sales at the moment is because people don’t know when they’ll be able to travel again.

You know, so people aren’t actually actively planning their next holiday at the moment because why would they when they don’t know when they’re going to be able to fly? People are being very offish for all the right reasons until things become a bit clearer, but until a vaccine comes out I think the disabled community or the vulnerable community will probably refrain from travelling because if they know the virus is still out there, you know that risk is just as prevalent now as what it is in six months’ time if it’s not cured, okay the numbers might be less but it can still scale up again.

So I’ve been hit massively, the whole industry has so, I’m not one to sit here and moan because everybody’s in the same boat. You look at these airlines, they’ve lost hundreds of millions of pounds and you know I’m sat here with my small little business so you know I can’t moan, everyone’s in the same boat really.

Cathy: So my final question really is what’s your go-to piece of advice for self-isolation for disabled and for people and people who are new to it?

Josh: Can I just say, I think I mentioned at the beginning of the call that everybody in society has a role to play and you’ve got people out there at the moment delivery drivers, NHS workers, politicians, you’ve got carers out there everybody out the is doing their bit and the vulnerable and disabled are being told to self-isolate and you’ve then got the whole other community of able-bodied folk who are being told to self-isolate that all of a sudden now you’re locked in your home, you don’t know what to do with it or you don’t know how to manage it.

And I think the elderly and the disability community are quite used to self-isolation and what I believe is that the disabled and elderly community have a role to play in advising the other part of society about how we remain in a positive state at home whilst isolating because It’s not easy you know, and as you grow up with a disability or you get a disability you learn to live with it.

You find creative and clever ways to deal with it at home and I mean you know, you’ve just to keep proactive, again that routine – what I do when I’m in for short periods of time so I set things to look forward to. It might be that on Monday, you’ve got your daily routine or might you wake up in the morning and you’re having a bad day, but there might be something on Wednesday you’re really looking forward to doing it might be watching Noughts and Crosses on the BBC at nine o’clock at night, I don’t think it’s on Wednesday it’s on a Thursday night but anyway.

The point is, that have you got TV shows that you’re looking forward to watching at a certain point or it might be that you might be speaking to your partner on a certain day or it might be that you’ve ordered shopping, and someone is going to drop it round on a certain day and have a conversation with that person through the window. I don’t know all the answers, all I know that having those things to look forward to or speak to someone also helps, breaking that down as well so I think routine, having something to look forward to whatever that might be personally and trying to keep yourself in a good mental state and the best thing to do if you are struggling is just pick up a phone and ring somebody that kind of really helps just speaking to a close one over the phone is a massive uplift and that will help a lot of people as well.

But before this all happened, what I find fascinating you’ve got a massive elderly community that are completely isolated at home that are really really struggling and now there’s so much focus on it but for all of the wrong reasons that we’re acknowledging that people are struggling and are in isolation because of a worldwide pandemic it’s fundamentally wrong and more should be done to address the problem of isolation at home for the elderly and disabled and I think the government have a part to play in that going forward now.

The government have a really good opportunity to acknowledge that and address it, we’ve seen how much money the government has coughed up because of this outbreak  £330 billion pounds, and they’re leaving nobody behind we’ve just seen the self-employed be covered so that’s great. I think the communities that are being left behind are the elderly and disabled. I think now with the NHS coming together, all the carers rallying out on the streets I think there’s a really good opportunity post Coronavirus for the government to do some really good stuff.

They’re going to learn so much stuff from this, everybody is going to learn so much stuff from this and we just really need to build on this momentum afterwards and hopefully society is going to come back even stronger. It’s just going to be brilliant, I can’t wait. 

 

Cathy: Brilliant, thanks so much Josh. 

Erin: Yeah so that was a really insightful interview there from Josh there not just in terms of disability on a personal level but also the impact on his business in the travel industry. Thanks so much to Josh for sharing that with us. Next up we’ll go to Jamie Woods on his experience of lockdown…

Cathy: Jamie thanks for joining us on The Disability Download, could you sort of talk us through of what your experience of self-isolation been like so far and your story?

Jamie: Yeah sure, so I’ve had depression in one way or another since about the age of 12. 30 years later, I’m still suffering from depression, anxiety or dealing with it rather suffering with dealing with I should say, it’s something that’s become part of my life now and I’ve got coping strategies to work.

In August in 2019, I was rushed to hospital with fever and all of these symptoms we’re actually seeing from Coronavirus, but it turned out that I had Acute Promyelocytic Leukaemia (APL) which is a form of blood cancer and I was really ill.

Because I reacted so badly to the drugs, I was moved from my hometown hospital of Swansea to 45 minutes down the road to Cardiff and I was isolated in a room with no windows and I was in there for about three weeks. 

Cathy: Oh gosh. 

Jamie: Yeah, I know (laughs) I’d get to go out a couple of times a day for a walk round the duck pond which was nice, but I couldn’t really interact with people and it was difficult for my kids to come and visit. So my wife would come a couple of times a week and then bring the kids on the weekend and it was really challenging to try and stay around during that time because you’re kind of lost in your own thoughts.

I had real problems with my vision as well I had a blood clot, a bleed behind my eye which meant I couldn’t read or anything and I’m a big reader and that was really difficult. And then since then, I’m in remission now that I’ve had to remain outside on the fringes of society anyway because I have a very, very low immune system as part of blood cancer especially.

If you’ve read any stuff about COVID-19 we’re on the vulnerable list so I’ve been kind of nervously approaching society at the best of times, you know maybe going shopping during the school day or something but never really coming into contact with many people and so we’ve been in lockdown for a couple of weeks now.

We had to make the difficult decision to take our kids out of school, because you’re kind of worried that you’re over reacting but ultimately if you think you’re over-reacting you’re probably not in this case and it was the sensible decision to make because a week later the schools got closed, which was a real relief because we didn’t want the impact on them to be they’ve missed out on a long time on a whole six months of normal life as it were so since then we’ve kind of been encased in our bunker.

Before all this kicked off, we’d arranged to buy, we’d put in an offer to buy a house with an extra bedroom because I’m a right mess at the moment with being ill it’s really difficult to get the space and the peace and quiet you need so we’re in a house that’s a little bit too small for two growing kids and two adults. We’re lucky we’ve got a back garden and a trampoline, so the kids are enjoying their time out there when the weathers alright, we’ve got an Nintendo which keeps everyone nice and busy, we’ve got Netflix and Disney Prime, I mean Disney plus. 

Cathy: Yes! I’ve just got that too. Oh my gosh, so good. 

Jamie: So much Star Wars, it’s amazing. But you know we’re lucky we’ve got the mod cons to keep us ticking over but you know two weeks, we’ve got another ten weeks to go of pure lockdown. So we’ve put in all the tricks and devices that we found in our previous isolationary periods to good use because this is unlike anything that I’ve ever seen before.

It’s the kind of thing that we’ve read about in history books when we were kids and this will be something that people will study in the future you know, how this world dealt with the global pandemic and you know, how we survived it. The most important thing is to keep ourselves going and survive it by being sensible and staying safe. 

Cathy: Do you have kind of isolation plans? Have you been staying in contact with friends and family through Skype and FaceTime things like that?

Jamie: Yeah absolutely, I was lucky enough to get a really good job at the start of the year, the start of last year. I got made redundant from my previous employers and I was lucky enough to find a job where I could do from home. So I’m kind of used to sort of working from home, video conferencing and all that kind of stuff. I was travelling a little bit as well, so I’d do a bunch of video chats with the kids so when I was in hospital then, brilliantly, you know Cardiff and Singleton Hospital in Swansea both have free WI-FI which is great so you can do video chats with your family and stay in touch with them in that way so it’s kind of been second nature.

So every weekend we spend Mother’s Day we spend the weekend in front of the phone with my Mum and my wife’s Mum. Yesterday my daughter spent most of the day playing on a game on Facebook, with her cousin. You know I haven’t seen in person any of my nieces or nephews since this thing started in August, but I’ve been able to do those video chats and sending messages over WhatsApp sending little videos, sending photos, it’s almost closer than having phone calls that you have every week or whatever with your parents.

My parents live at the other end of the country, so you know we have a phone call, you know me, and Dad talk about football for ten minutes, me and my Mum talk about what the kids are up to for ten minutes. I don’t know face-to-face seems a lot more personal it’s heart-breaking, but it is so lovely and vital. Everyday someone in this family is on facetime or talking to someone else and it’s just been a really good way of just maintaining contact which I think you miss otherwise because it just gets really difficult.

And it doesn’t just have to be family, it could just be a friend. There’s a big trend for house parties and stuff like this. When we were younger and we were much cooler and before we had children, we used to go to these things called nightclubs, one of our favourite clubs is still going and they did a whole live stream on Saturday night so we just sort of tuned into that and all the classic records that we used to listen to and it was really invigorating, just to be able to take part in something virtual and to see what people were saying in the chat room talking away and saying what an amazing tune all that kind of stuff.

Cathy: That’s lovely. 

Jamie: Yeah right? It makes it much more inclusive. My job, my proper job is Community Manager and I run a forum so it’s somewhere that I’ve turned to in this time, not my forum because my forum’s really techy and you know it’s about a specific business function.

I’m on a lot of charity forums for blood cancer and it’s just been really interesting talking to other people in a similar situation to myself how we’re dealing with it and also to share information I think there’s a lot of dodgy information going round on the internet which may or may not be true but when you’re talking directly to representatives from a charity, you’re getting goof information that relates directly to your issues. You know when the government announced that people with blood cancer are at risk, there was nothing more. 

Cathy: Yeah. 

Jamie: Then you go and talk to Leukaemia care or to Bloodwise they can delve that bit more deeper into it. I think finding shared interests or shared situations is a key forums. 

I’ve been on internet forums since I started using the internet in the early 2000’s. It’s always been somewhere where I felt I could be myself because I’m very introverted but at the same time I’m desperate to be an extravert, sit at the back, be a wallflower, read things and contribute when you’re capable and if you feel capable, it’s not necessarily about taking part in typing but just reading can give you that real sense of community and that’s one of the key passions of my life has been building these communities and it’s really weird coming again from the, from the community member as opposed to the community leader approach.

I’m taking my first tentative steps thinking into it and it’s like ohh am I doing the right thing and certainly at this time everyone has been so kind. It was difficult when I was kid with depressions 30 years ago, people didn’t have the same understanding or compassion for it as they do now, and it was very difficult to talk about and it took me a long, long time to talk about it and this is the first time publicly that I’ve actually spoken about it. 

Cathy: Oh wow. 

Jamie: Yeah, I know right? It’s cool.

Cathy: Yeah, thanks for sharing it with us. 

Jamie: Oh no, it’s fine. It’s just one of those things, you see more people come out and say I’ve got depression. And I used to be a manager in a call centre and people would start saying “I’m off work I’ve got depression” and I’d be able to help then and talk to them about it and share my experience.

I think coming through this has been very difficult to be vocal, about that but on the internet you can sort of hide yourself almost slightly anonymously and sort of share your experiences and with my Leukaemia diagnosis, it’s been easier because you can easily find the hashtag APL which is the type of leukaemia I’ve got, or you can go to one of the Leukaemia forums and just talk to people on there or just talk to people on Facebook about it.

My wife is part of APL group that I’m not, we tend to keep these things separate so she can talk to her group of people and I can talk to my group of people. It’s a really nice way to do things because you can share that experience and I’ve also found over the years I’ve been a member of football forums, Star Wars forums and music forums because they’ve been my shared interests so it doesn’t necessarily be this is your disability, go and find a website to talk about it, it can very much be this is my interest and I’m going to talk about it on there.

It doesn’t have to be utterly gregarious and telling lots of tales or commenting on everything but just to read makes you feel less alone and I think that’s really important. 

Cathy: Totally, I hadn’t actually thought about it from that perspective because I think sometimes when you’re part of an online group you can almost feel like you have to post or you have to have those interactions to be part of that community, but I hadn’t actually thought about it, just reading is being part of a community is a really refreshing way of looking at it and quite liberating in a way. 

Jamie: Yeah, I used to run a community for a very large telecoms provider without naming any names. We had like half a million members, probably more. And it would be very much the case that they’d be about 200 people posting each week but those posts would be read by thousands of people and this was a help and support forum so people would come on and look for advice and that alone if they’ve found that advice, then brilliant, they’ve found the information that they needed without necessarily actively taking part they’ve passively taken part and they’ve got the help and I think that’s a big part of what we publish online.

You know I’ve written blogs in the past, I write a lot of nonsense tweets you know, people read them and I’m not saying people should read it and be influenced by me or any nonsense like that but it’s just about being able to say something and I follow lots of people on twitter that I’ve never once had any interaction with but they play a massive role in my life because if they don’t tweet then I’m like what’s happened to them?

Cathy: Yeah that’s true, so what’s your go-to piece of advice for people who have anxiety and are new to self-isolation? 

Jamie: The best thing you can possibly do is to get into some kind of structure or routine. When I first started at home when I got let out of hospital, my routine was generally sleep, wake up, watch The Chase, watch Tipping Point, probably sleep some more.

But that’s not good, that’s not good for your head. So it’s more about setting yourself things to do and they just can be small things. I’ve read far more books than I’ve read for a long long time but it’s just by making the time to do it and say right I’m going to have an hour of doing this, then I’ll make some lunch, maybe spend a bit more time making lunch then you usually would.

Just set yourself a target, set yourself a time because this is, I know there’s financial difficulties at the moment, people are having trouble getting food deliveries right now but the main thing that you can do right now is look after yourself, just spending some time doing what you love or what you enjoy then do that, this is a free pass. 

Cathy: Great, brilliant, thanks so much Jamie. 

Jamie: It’s alright You’re more than welcome, it’s been an absolute pleasure. 

Music 

Erin: So I think it’s really interesting what Jamie said in terms of support and the support you can get from the online community during this time I think that’s a really important thing to pick on because there is so much out there, being able to talk to other people who really understand where you’re coming from but can also share different perspectives with you.

I think that really helps and I guess are lucky that we can be so connected during this time, so we really want to thank Jamie for sharing his story for the first time on our podcast. 

Cathy: Next up we hear from Sophia on her thoughts about Coronavirus and non-visible disabilities. 

Erin: So Sophia, thank you so much for joining us on the podcast today, given everything that’s going on at the moment with Coronavirus you know there’s been so many people that kind of brush it off and say “oh it’s only old people who are affected” and they think that you know that underlying health conditions it’s like an age related thing.

There’s more and more people coming out on social media talking about how they’re high risk and raising awareness of how this can affect people of all age groups with non-visible disabilities and chronic health conditions and raising awareness in that way. Do you think that will help make a change as well the fact that people are talking it in this way to raise awareness about something that is so serious, do you hope that that conversation will continue moving forward as well?

Sophia: My fear is that we’ll have a sort of short term memory loss. So I think in the next few months, there will be significant strides in how people with chronic illnesses and disabilities are treated. It’s starting to show like you said, people are talking about vulnerable groups rather than just older people but there are still so many who are berating disabled people for going to shops early for example and I’ve seen it in social media who look able but they have to wear a badge or some sort of lanyard with a sunflower logo on it to show that they have a disability and hopefully what will happen as a result of this is that people will raise awareness of the daily issues that disabled people go through.

You know right now there’s a lot of campaigns within charities on Universal Credit and how families for the first time having to face universal credit and how low the amount actually is for those who need to get work and for those who are unemployed or struggling to get work.

And for anyone who has been unemployed like I have a lot or anyone who has a disability, this is just a daily norm and the fact that it’s taken a crisis to raise awareness of the horrendous conditions that people are living with Universal Credit, it’s just not good enough.

And hopefully, it can be a point where we can learn from this, the system is really bad we need to support people even more, we need to support people with disabilities even further and change those policies. But maybe I’m just quite pessimistic because I work in campaigning and policy and I haven’t seen a significant change that we’ve been wanting for years.

And I’m hoping this is a point where people start thinking, we’ll actually I can’t, it’s that old saying you can’t judge a book by it’s cover because you can’t. It’s such a simple thing but if you just ask someone if they need support if they look like they need help, if you just ask them, rather than decide if they need your support, that’s a very ableism thing to do and I’ve been quite shocked at how many people on social media have said that they’ve, I mean I’m not surprised I’ve heard it before but have been driven around on their wheelchair without being asked and it’s this idea that you need to be asked first of all if someone wants your support if they do then yeah please help and support them but in a situation like COVID-19 where everyone is freaking out, please don’t stockpile because there are people who can’t actually get to the shops and can’t get to those facilities.

And even with the government guidance a lot of disabilities aren’t recognised so these big letters that came out this week for people who are at risk and I didn’t get one because I’m still in diagnosis phase. So there’s going to be hundreds of thousands of people who won’t get that letter, who are still at risk because they didn’t get diagnosed and there just needs to be a general understanding, and the only reason I didn’t get picked is because I didn’t physically show anything, and on that particular day my pains were tame.

But the day after I was in absolute agony and so the way that we’re processing people and deciding and putting them into boxes, that’s not how disability is and a lot of chronic conditions fluctuate, they get worse or they get better and the fact that this is just not represented in policy or in any of the COVID responses from what I’m seeing is really troubling. 

Erin: Yeah so you think that with everything that’s going on it’s kind of doing two things, its bringing it more into conversation the fact that people are talking about it and obviously people are recognising now, that probably didn’t even realise that those are the benefits that disabled people have been having to live off of for years. 

But then at the same time it’s also highlighting the glaring gaps that exist and how much there is to do still. 

Sophia: Yeah because I mean, do I realistically think that suddenly after this people are going to have conferences where anyone can dial and video conference? Honestly no I wish that was the reality but no. I’ve been trying to get that for years with campaigns I’ve done at student unions and stuff and it’s really difficult to get anyone to change that mindset.

And so it’s very frustrating for people in the disability community which I include myself in, to see all of these changes happening for all of these abled people that wasn’t available for us and I think the fear is “What if people forget?” and they’re like “I really hated working from home when I needed to so we’re going to make sure everything is physical from now on, we want to make sure that we’re engaging with each other."

Not all disabled people can engage face to face all the time and there needs to be a general understanding that more virtual hang outs, meet ups need to be available. I mean the number of times I’ve interviewed for a job for example, and I’ve been told I can’t come in because of my pains and they said oh we have to cancel then, and I said is there any way we can do a video call? No.And now I’m seeing everywhere people doing this, so it does, it frustrates me and upsets me.

And I think a lot of people would agree there needs to be changes that are more concrete needed more than just a reactive motion from COVID-19 because it is good the disabled community are having and are getting some attention but they’re not getting enough and like you mentioned with the shop hours.

It’s mainly people saying that It’s supposed to be for older people and vulnerable people and if you have an invisible disability, you’re maybe not immediately seen as vulnerable and I’ve seen the abuse that people have got for trying to use the disabled toilets in the past and I have as well and it’s not right.

We just need to change that pubic perception as soon as possible and I’m hoping that COVID-19, if there’s any positive impact from this awful situation is that we can start being kinder to each other and looking at people as people and not just as a label that you create for them. 

Erin: Definitely and definitely agree and hopefully like you say the conversation is going to continue long beyond this rather than just being just a moment in time. Thanks so much for joining us Sophia it’s been great talking to you.

 

Sophia: Thank you very much thanks. 

Music

Cathy: So it was really interesting to hear about Sophia’s experience and obviously she’s a very passionate disability rights campaigner and I think what she’s got to say is really important in terms of the wider impact of Coronavirus on people who have non-visible disabilities and underlying health conditions and our attitudes to hygiene and the way we’re going to look at social interaction. 

Erin: Yeah absolutely, great interview and great to hear from her again on this episode so finally we’re going to move onto writer and disability rights campaigner, Chloe Timms who is going to talk about her experience of lockdown…

Cathy: Hi Chloe, thanks so much for joining us on The Disability Download, how has lockdown been for you so far?

Chloe: I think the first few weeks probably the same for everyone was difficult, I found it quite hard when I felt that the world was carrying on as normal and I felt a bit panicked that I knew I was going to be, well I am high risk and I had kind of made the decision before the announcements were made that I was going to stay in and cancelled my hair cut and things like that but knowing that everyone on the outside was still going to the pub and still going out. I found that quite nerve wracking.

I live with my mum and stepdad and they were both still working at that point and I was still having carers come in and I still am having carers come in at the moment so the first few weeks I found it very difficult because I kind of felt like I’m really, I would never normally describe myself as vulnerable but I think in this case it’s a very accurate to use that word.

And I know that obviously I hope I won’t catch it but obviously if I did it would be very very serious so yeah the first few weeks were very difficult I think like everyone, because there was so much news and change on the news I was very avidly watching it and everyone’s saying “don’t watch it too much”.

It was kind of hard not to especially when it feels like you’re in the middle of history. I feel like it’s settled down a little bit more at the moment, it sounds a bit wrong to say at the moment it feels a bit more normal, but I feel a bit more used to it at the moment. 

Cathy: Yeah definitely, it has that kind of effect now everything’s calmed down a little bit. 

Chloe: Yeah even things like supermarkets seemed to have calmed down a bit now so that’s reassuring. 

Cathy: Yeah definitely and Chloe you’re a writer and you’re working on your first novel, how has this affected your working life almost and how has it affected the development of your novel In a way? In terms of the way you write. 

Chloe: It’s been hard. I think there were so many tweets going round at the beginning saying that Shakespeare wrote King Lear during a quarantine and you think “Oh my god what should I be doing in this time?” and I think there’s a divide really between people who are being so creative and really embracing during this time which is great but there’s also the other side of it where your brain cannot cope with anything but what’s happening now.

And I think there’s that side of people that are like this is the time to be creating art and dealing with it in that way, then other people that feel like what’s the point? I’ve kind of being getting on with it but its been difficult because obviously my home life has changed in a sense as my parents have both been home rather than working so the house is noisier, it’s easier to be distracted because people’s lives have changed their generally a bit more chatty because they’re at home and they’re not working.

So you check your phone and you’ve got five times more texts and it’s very hard to just put that away and not check twitter and not check the news. Unfortunately, my stepdad doesn’t know how to put his phone on silent and he gets the ‘breaking news’ alerts and go off in the house and I’m halfway through writing something and I’m thinking should I be checking the news so I’ve had my ups and downs with it It’s like what everyone says really, it’s about keeping your normal routine as much as possible so I have got better now at getting back to doing that so It’s sort of been mixed really.

I think I’ve found it easier in the last two weeks to cut off and just say right I’m going to get on with it and get back to it how I was before this all happened. I would say probably, in terms of my writing life hasn’t changed, I still have the same amount of time but it’s just kind of, there’s more distractions I guess which makes it a lot harder. 

Cathy: Yeah definitely, you’re a campaigner for disability rights – there’s been lots of talk on twitter about how companies that weren’t able before to accommodate people working from home due to their disabilities obviously now we’ve seen companies being very flexible where you can work from home and the culture around that almost has changed showing it was possible all along, what are your thoughts about how that might change the game in a way disabled people in terms of the culture of  working from home and flexible working?

Chloe: Yeah I think it’s really interesting and not even working from home and things like theatres are opening up their doors like the National Theatre having or streaming a show the same time every Thursday I just think it just shows really that when the world shuts down for everyone that everything becomes a lot more accessible from your home and it shows that everyone’s been able to that from the start and it’s kind of that unwillingness to change.

I’d like to be optimistic and say that after I this is over maybe companies will be more flexible in terms of working home or working virtually because it is possible and we’re seeing it now it’s a lot more widespread. I don’t know, I’d like to be optimistic but I don’t know whether we’ll see a massive shift I think it might be hard for people to go back to work in office but I suppose people are missing it but yeah I hope there will be a change and it won’t be seen as a rare or impossible thing for even things like meetings and things like that people will be a lot more willing to do things virtually because we’re going to be pro’s at this by the end of it, everyone’s going to be a zoom pro, so I’d like to think that when things go back to more normality things will change because it’s now obvious it was always possible it just wasn’t always done. 

Cathy: Yeah definitely, what are your lockdown plans looking ahead almost and do you have any advice for other people?

Chloe: Well at the moment, which I think everyone else is doing my highlight is me and my friends are doing a pub quiz every Tuesday night. 

Cathy: Nice. 

Chloe: Yeah we’re taking it in turns to be quiz master and honestly it’s become something I so look forward to, and its funny really because in a way lockdown’s made me feel more connected to friends and more sociable even though the group of friends I’m doing the quiz with some of them live not even five miles from my house but we don’t actually meet every week, we don’t meet that regularly but we’re making an effort to do our quiz every week and that’s great.

I think it is hard to fill your days and I think the temptation is to just do mindless scrolling which isn’t great and things like that when its kind of pretty bleak out there. I don’t want to think ahead too much in terms of this Is what I’m going to do when it’s all over because like everyone I think I’m aware that although there’ll be a normality it will not be exactly the way it was before but I kind of have this thing of I think oh these are the kind of restaurants I want to eat at and these are the things I want to do, these are the places I want to go and things I want to see.

I think my only thing really is that one of my main anxieties at the beginning was because I’m still having care I kind of think I haven’t been able to isolate myself as much as I feel like I should be and I feel like that’s a kind of real weak spot because I use a care agency and I have probably about five carers a week come in and see me and that was one of my main anxieties at the beginning and still is now to an extent because obviously they have families and they go to the supermarket I can’t expect them to shut themselves away completely when I they go home and obviously its well-known now that there’s such shortages on PPE and at the beginning I had to ring my care agency and say can I have some masks for my carers?

Cathy: Oh really?

Chloe: Oh yeah, I mean they’ve always had gloves and aprons, but masks weren’t really a thing. I mean my care company is great but at the beginning I don’t think that they were switched on as I perhaps wanted them to be or needed them to be and so I said to them can I please have some masks?

And then I had to say to carers coming every day, could you put on a mask please? And I felt a bit awkward asking because it felt like I was saying oh you know I think you’re infected or but it was just that extra protection but I know the company have such a shortage on masks, they were giving out three masks a week for carers and then going off to see ten different people a day 

Cathy: Oh wow, yeah. 

Chloe: And I feel like that’s an oversight not just kind of in terms of what the company are doing but in terms of the coverage its getting on the news and things like that. These carers are going from house to house, person to person then to supermarkets possibly extra supermarket trips because they are doing trips for clients and so they come into contact with who knows how many people.

I know that my carers that I have are very conscious of it and are very sensible about these things so I know that they’re being as careful as they can be at home, but it is that kind of weak spot. I personally don’t know what would happen if one of my carers went to someone with COVID and then found that they’d been to me and then and some other people, I don’t know what the protocols are and I don’t think the company has been given advice either so.

 I know it’s completely unprecedented and no-one really knows what they would do but I guess it’s the same problems that care home are having but it is one of the things that I think it’s a kind of ticking time bomb of not even necessarily with my company but with other care companies around the country that I think we, disabled people can only do so much to protect ourselves and there’s kind of we cannot physically, a lot cannot if we need support can shut ourselves away completely from the outside world as much as we can have food deliveries and medication deliveries, if we need care – we’re stuck, there’s no way we can say well I just won’t have care I mean I seriously considered cutting down my care and because my mum’s here she can support me a little bit.

I thought should I be cutting down my care? Should I be cutting it to the bear minimum that I need? I spoke to my company and said could you please ensure I have a few people as possible because I kept thinking how many people of those five people are coming into contact with? And I know it make you kind of a bit paranoid, but I think when I know how at risk I am it kind of makes you think extra hard about these things.  

Cathy: Yeah definitely, I think when I’ve spoken to other people on this podcast as well as looking at disabled influencers, they’ve literally said the same thing, you know am I being too paranoid? But I think you’re completely right in the sense that you know.

How can you not be in this situation you have to be so vigilant and careful and as you say, what we’re going through at the moment is unprecedented at the moment and to what extent you need to be paranoid about these things and obviously you should be having to do that, having to cut care where you can there are so many people who don’t have the set up at home in order to be able to do that because either they don’t have the family support or might not have the socio-economic background available as readily to other people so yeah you’re completely right. 

Chloe:  And like you say, I’m very lucky. I could potentially lose one call a day and ask my mum to do it but like you say, I shouldn’t have to and it’s not really a good idea because in terms of her health, in terms of my mental health and I then started to think and then worry about looking long term thinking well. 

If I’m viewed with as being able to cope with less care would that then be imposed on me after this has happened you know and I think these are concerns for everyone and I think particularly if you’re in a situation where perhaps where you necessarily haven’t got a small team or you use an agency where you could be getting lots of different people and then your exposure to risk is even greater.

And I don’t know what the answer is to that and I don’t really know whether that’s something being talked about for those kind of risks but I know it makes you feel like its out of your control and I think everyone in this situation is trying to impose their own sense of control  as much as possible either by limiting how often they go out or where they go, what they do when they’re in the supermarket.

But for those of us that rely on others it’s a scary prospect and that’s one of the things that I think that’s made me most scared, most upset, over the last couple of weeks because I kind of felt like if I get this it won’t be through any fault of my own but there’s only so much I can do to stop it and I know that might make it sound quite morbid or quite scary but those are the thoughts that are running through a lot of our heads at the moment. 

Cathy: Definitely and it’s completely legitimate to think that and its as you say everyone’s trying to have that control over their lives but really when external forces like this obviously a pandemic there’s only so much you can do and control but absolutely that’s such a good point to raise and talk about. Thank you for being on the podcast Chloe. 

Chloe: No thanks for having me, it’s been really good to chat. 

Erin: Great points and thoughts from lots of different perspectives about coronavirus and what this means for disabled people and the world we’re living in right now. Chloe talked about care she made such an important point about Personal Protective Equipment which such a big issue right now for frontline care staff, and NHS workers to protect them and the people they’re supporting and protect their families as well. 

Cathy: Yeah and we don’t usually do this but… Leonard Cheshire is a charity, as part of our charity you may or may not know that we provide care for people, it’s just one of the many things we do. The demand for Personal Protective Equipment is higher than ever and it’s expensive. We’ve just launched a fundraising campaign to help get our frontline line staff the equipment they need. 

Erin: Yeah obviously as the situation continues, those costs are going to rise and the need is going to be absolutely imperative so you can donate, if you like on our website at leonardcheshire.org, we’ll put the link in the show notes. We’d like to say a massive thank you to each and every one of our guests on the podcast who have shared their stories and experiences with us this month. 

Cathy: Your voice is so important during a time like this. We want to make sure we use this podcast as a platform to get your voice heard. 

Erin: Yeah so why not help us shape the podcast – what do you want to hear more of during the pandemic? What do you want to hear less of? What topics would help you get through this time as we live in the new ‘normal’?

Cathy: Let us know, tweet us or just send us a good old fashioned email. Please give us a rating on whatever platform you’re listening on, share it with your mates and your family and most importantly please subscribe. 

Erin: Also I think it’s worth mentioning that if need support or know someone who needs support during this time, we do have a coronavirus page on our website it’s packed full of useful resources definitely take a look at that as well. Thanks for listening and stay safe. 

Cathy: I’m Cathy

Erin: and I’m Erin 

Cathy and Erin: And you’ve been listening to The Disability Download.