In this episode, we talk about the impact of coronavirus and self-isolation on disabled people and those with long-term health conditions. When the current restrictions began back in March, we spoke to business owner Josh Wintersgill about his experience of lockdown and the effect on his business in the travel industry. We also spoke with Jamie Woods, a community manager and fan of the show, about shielding during the pandemic. We also discuss non-visible disabilities and chronic health conditions in the time of coronavirus, and public perceptions with disability rights campaigner Sophia Kleanthous. Chloe Timms, writer and campaigner, answers questions on living and working in lockdown. Photo by šØš Claudio Schwarz | @purzlbaum on Unsplash Music: Sun Shine by Cymatix provided by Premium Beat
GuestsĀ
Josh Wintersgill @Able_MoveUKā 01:42 ā 15:55
Jamie Woods @jamiewoods77 ā 16:27 ā 33:22
Sophia Kleanthous @soph_campaigner ā 33:57 ā 41:29
Chloe Timms @clotimms ā 42:15 ā 58:20
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Check our website for more information around coronavirus: https://www.leonardcheshire.org/
Contact us at disabilitydownload@leonardcheshire.org
Isolation podcast transcript
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Cathy Lynch:Ā Hello and welcome to The Disability Download. The Disability Download is brought to you by pan-disability charity Leonard Cheshire. Iām Cathy Lynch.
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Erin OāReilly:Ā And Iām Erin OāReilly and on this podcast, we respond to current topics, share stories and open up conversations about disability.Ā
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Cathy: Weāre bringing this podcast to you from isolation over Skype which is very timely since the topic of this monthās podcast is self-isolation and coronavirus. For people who have a disability and long-term health conditions, going into isolation isnāt always that simple.
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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.Ā
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Cathy: So weāve spoken to Josh Wintersgill, winner of the 2018 Stelios Award for disabled entrepreneurs and Jaime Woods, a Community Manager and fan of the show about his experience of lockdown with his family.
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Erin: And you might remember Sophia, who we interviewed in our last podcast on the āDisabled Looks Like Meā 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.Ā
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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 weād gone into full lockdown. Hereās what he had to say:
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Cathy: So Iām 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 weāre finding ourselves in?
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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 wasĀ interesting with Coronavirus is obviously the impact that itās having on peopleās 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 weāre in the middle of March its in England and now itās really hit home oh my god the virus is here and itās picking up momentum and more people were being infected with it day by day and now itās 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, Iāve got a lodger and my sister has her boyfriend coming and going, Iāve got my girlfriend coming and going. I have three carers coming in and out of the house every day, itās like oh my god you know how do I self-isolate when Iāve 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?
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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 didnāt 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 wasnāt 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 canāt have you catching this virus and I spoke to my family and my family said to me they go āLook, itās probably best for you to move home and come back and live with your Nanā, my Nan is 74/75 and sheās vulnerable anyway but sheās fit and well enough to look after me, sheās done my care since I was a child and so she lives on her own, itās isolated weāre lucky enough that we can go out for a walk and not bump into anybody. Thereās ground around the area, for me it was a no-brainer to move back home but what Iāve had to do is sacrifice my shower at home. Iāve had to sacrifice the toilet, so I canāt have a now shower for the next three or four monthsĀ
so Iām having bed baths here at my nanās. Going to the toilet, I canāt go to the toilet because I canāt go into the toilet so Iām having to go into a bucket and itās 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 itās actually quite frightening that for me personally it felt like they didnāt 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 didnāt 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 weād just have to phone up and order it or just drop it off and thatās fantastic but not necessarily all communities are like that. And itās great if youāre vulnerable and haver underlying health conditions where you donāt have that support network. We need more and more people like that who are going to come out and help us so itās going to be a quite a testing time but you know, yeah itās very strange this self-isolation, sacrificing all your home comforts to come here, you know knowing that chances are youāre probably not going to catch the virus being here so itās that trade off isnāt 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.Ā
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Cathy: Where do you see attitudes moving towards after this period of self-isolation is over?
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Josh: Itās quite simple, I think people will appreciate the democracy we live in, you know you donāt appreciate the independence and the freedom that we actually have in our society here and itās until something substantial like this happens that you realise how just going to shop to get some essentials that you do every day, you donāt appreciate until something like this happens. Our attitude to appreciate what we have in day to day life will completely change thatās not just an individual family level, but I think the way we live globally will change and I think peopleās perceptions of viruses will change and how we keep ourselves hygienic will change. I think weāll see a community now that will be probably come together more vocally in person rather than social media. I donāt know, Iām in the travel industry and I think itās been hit for six and I donāt think that will ever be the same either.Ā
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Cathy: Yeah, that kind of moves onto my next question because youāre a business owner and self-employed, you won the Stelios award for disabled entrepreneurs and through winning that money youāve expand your business and you sell accessible travel seats to airlines. Whatās the effect that Coronavirus has had on your business and in the travel industry in general?
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Josh: If we start with the travel industry first.Ā
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Cathy: Yeah.
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Josh: Everybody has been affected, whether itās 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 weāve had a huge decline in website traffic and sales, either they were travelling and are not travelling or another thing with why weāre not seeing sales at the moment is because people donāt know when theyāll be able to travel again. You know, so people arenāt actually actively planning their next holiday at the moment because why would they when they donāt know when theyāre 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 monthsā time if itās not cured, okay the numbers might be less but it can still scale up again. So Iāve been hit massively, the whole industry has so, Iām not one to sit here and moan because everybodyās in the same boat. You look at these airlines, theyāve lost hundreds of millions of pounds and you know Iām sat here with my small little business so you know I canāt moan, everyoneās in the same boat really.
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Cathy: So my final question really is whatās your go-to piece of advice for self-isolation for disabled and for people and people who are new to it?
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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 youāve got people out there at the moment delivery drivers, NHS workers, politicians, youāve got carers out there everybody out the is doing their bit and the vulnerable and disabled are being told to self-isolate and youāve then got the whole other community of able-bodied folk who are being told to self-isolate that all of a sudden now youāre locked in your home, you donāt know what to do with it or you donāt 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 Itās 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, youāve just to keep proactive, again that routine ā what I do when Iām in for short periods of time so I set things to look forward to. It might be that on Monday, youāve got your daily routine or might you wake up in the morning and youāre having a bad day, but there might be something on Wednesday youāre really looking forward to doing it might be watching Noughts and Crosses on the BBC at nine oāclock at night, I donāt think itās on Wednesday itās on a Thursday night but anyway. The point is, that have you got TV shows that youāre 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 youāve 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 donāt 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 youāve got a massive elderly community that are completely isolated at home that are really really struggling and now thereās so much focus on it but for all of the wrong reasons that weāre acknowledging that people are struggling and are in isolation because of a worldwide pandemic itās 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, weāve seen how much money the government has coughed up because of this outbreak Ā£330 billion pounds, and theyāre leaving nobody behind weāve just seen the self-employed be covered so thatās 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 thereās a really good opportunity post Coronavirus for the government to do some really good stuff.Ā Theyāre 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. Itās just going to be brilliant, I canāt wait.Ā
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Cathy: Brilliant, thanks so much Josh.Ā
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Erin:Ā Yeah so that was areally 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 weāll go to Jamie Woods on his experience of lockdownā¦
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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?
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Jamie: Yeah sure, so Iāve had depression in one way or another since about the age of 12. 30 years later, Iām still suffering from depression, anxiety or dealing with it rather suffering with dealing with I should say, itās something thatās become part of my life now and Iāve got coping strategies to work. In August in 2019, I was rushed to hospital with fever and all of these symptoms weāre 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 forty five 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.Ā
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Cathy: Oh gosh.Ā
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Jamie: Yeah, I know (laughs) Iād get to go out a couple of times a day for a walk round the duck pond which was nice, but I couldnāt 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 youāre 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 couldnāt read or anything and Iām a big reader and that was really difficult. And then since then, Iām in remission now that Iāve 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 youāve read any stuff about COVID-19 weāre on the vulnerable list so Iāve 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 weāve been in lockdown for a couple of weeks now. We had to make the difficult decision to take our kids out of school, because youāre kind of worried that youāre over reacting but ultimately if you think youāre over-reacting youāre 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 didnāt want the impact on them to be theyāve missed out on a long time on a whole six months of normal life as it were so since then weāve kind of been encased in our bunker. Before all this kicked off, weād arranged to buy, weād put in an offer to buy a house with an extra bedroom because Iām a right mess at the moment with being ill itās really difficult to get the space and the peace and quiet you need so weāre in a house thatās a little bit too small for two growing kids and two adults. Weāre lucky weāve got a back garden and a trampoline, so the kids are enjoying their time out there when the weathers alright, weāve got an Nintendo which keeps everyone nice and busy, weāve got Netflix and Disney Prime, I mean Disney plus.Ā
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Cathy: Yes! Iāve just got that too. Oh my gosh, so good.Ā
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Jamie: So much Star Wars, itās amazing. But you know weāre lucky weāve got the mod cons to keep us ticking over but you know two weeks, weāve got another ten weeks to go of pure lockdown. So weāve put in all the tricks and devices that we found in our previous isolationary periods to good use because this is unlike anything that Iāve ever seen before. Itās the kind of thing that weāve 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.Ā
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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?
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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 Iām 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 Iād 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 itās kind of been second nature. So every weekend we spend Motherās Day we spend the weekend in front of the phone with my Mum and my wifeās Mum. Yesterday my daughter spent most of the day playing on a game on Facebook, with her cousin. You know I havenāt seen in person any of my nieces or nephews since this thing started in August, but Iāve been able to do those video chats and sending messages over WhatsApp sending little videos, sending photos, itās 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 donāt know face-to-face seems a lot more personal itās heart-breaking, but it is so lovely and vital. Everyday someone in this family is on facetime or talking to someone else and itās just been a really good way of just maintaining contact which I think you miss otherwise because it just gets really difficult. And it doesnāt just have to be family, it could just be a friend. Thereās 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,Ā
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Cathy: Thatās lovely.Ā
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Jamie: Yeah right? It makes it much more inclusive. My job, my proper job is Community Manager and I run a forum so itās somewhere that Iāve turned to in this time, not my forum because my forumās really techy and you know itās about a specific business function. Iām on a lot of charity forums for blood cancer and itās just been really interesting talking to other people in a similar situation to myself how weāre dealing with it and also to share information I think thereās a lot of dodgy information going round on the internet which may or may not be true but when youāre talking directly to representatives from a charity, youāre 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.Ā
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Cathy: Yeah.Ā
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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, Iāve been on internet forums since I started using the internet in the early 2000ās. Itās always been somewhere where I felt I could be myself because Iām very introverted but at the same time Iām desperate to be an extravert, sit at the back, be a wallflower, read things and contribute when youāre capable and if you feel capable, itās not necessarily about taking part in typing but just reading can give you that real sense of community and thatās one of the key passions of my life has been building these communitiesĀ and itās really weird coming again from the, from the community member as opposed to the community leader approach. Iām taking my first tentative steps thinking into it and itās 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 didnāt 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 Iāve actually spoken about it.Ā
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Cathy: Oh wow.Ā
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Jamie: Yeah, I know right? Itās cool.
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Cathy: Yeah, thanks for sharing it with us.Ā
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Jamie: Oh no, itās fine. Itās just one of those things, you see more people come out and say Iāve got depression. And I used to be a manager in a call centre and people would start saying āIām off work Iāve got depressionā and Iād 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, itās been easier because you can easily find the hashtag APL which is the type of leukaemia Iāve 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 Iām 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. Itās a really nice way to do things because you can share that experience and Iāve also found over the years Iāve been a member of football forums, Star Wars forums and music forums because theyāve been my shared interests so it doesnāt 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 Iām going to talk about it on there. It doesnāt 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 thatās really important.Ā
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Cathy: Totally, I hadnāt actually thought about it from that perspective because I think sometimes when youāre 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 hadnāt 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.Ā
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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 theyād 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 theyāve found that advice, then brilliant, theyāve found the information that they needed without necessarily actively taking part theyāve passively taken part and theyāve got the help and I think thatās a big part of what we publish online. You know Iāve written blogs in the past, I write a lot of nonsense tweets you know, people read them and Iām not saying people should read it and be influenced by me or any nonsense like that but itās just about being able to say something and I follow lots of people on twitter that Iāve never once had any interaction with but they play a massive role in my life because if they donāt tweet then Iām like whatās happened to them?
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Cathy: Yeah thatās true, so whatās your go-to piece of advice for people who have anxiety and are new to self-isolation?Ā
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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 thatās not good, thatās not good for your head. So itās more about setting yourself things to do and they just can be small things. Iāve read far more books than Iāve read for a long long time but itās just by making the time to do it and say right Iām going to have an hour of doing this, then Iāll 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 thereās 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.Ā
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Cathy: Great, brilliant, thanks so much Jamie.Ā
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Jamie: Itās alright Youāre more than welcome, itās been an absolute pleasure.Ā
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Erin: So I think itās really interesting what Jamie said in terms of support and the support you can get from the online community during this time I think thatās 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 youāre 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.Ā
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Cathy:Ā Next up we hear from Sophia on her thoughts about coronavirus and non-visible disabilities.
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Erin:Ā So Sophia, thank you so much for joining us on the podcast today, given everything thatās going on at the moment with coronavirus you know thereās been so many people that kind of brush it off and say āoh itās only old people who are affectedā and they think that you know that underlying health conditions itās like an age related thing, thereās more and more people coming out on social media talking about how theyāre 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?
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Sophia:Ā My fear is that weāll 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. Itās 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 Iāve 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 thereās 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 itās taken a crisis to raise awareness of the horrendous conditions that people are living with Universal Credit, itās 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 Iām just quite pessimistic because I work in campaigning and policy and I havenāt seen a significant change that weāve been wanting for years. And Iām hoping this is a point where people start thinking, weāll actually I canāt, itās that old saying you canāt judge a book by itās cover because you canāt. Itās 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, thatās a very ableism thing to do and Iāve been quite shocked at how many people on social media have said that theyāve, I mean Iām not surprised Iāve heard it before but have been driven around on their wheelchair without being asked and itās 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 donāt stockpile because there are people who canāt actually get to the shops and canāt get to those facilities. And even with the government guidance a lot of disabilities arenāt recognised so these big letters that came out this week for people who are at risk and I didnāt get one because Iām still in diagnosis phase. So thereās going to be hundreds of thousands of people who wonāt get that letter, who are still at risk because they didnāt get diagnosed and there just needs to be a general understanding, and the only reason I didnāt get picked is because I didnāt 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 weāre processing people and deciding and putting them into boxes, thatās 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 Iām seeing is really troubling.Ā
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Erin: Yeah so you think that with everything thatās going on itās 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 didnāt even realise that those are the benefits that disabled people have been having to live off of for years.Ā
But then at the same time itās also highlighting the glaring gaps that exist and how much there is to do still.Ā
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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, Iāve been trying to get that for years with campaigns Iāve done at student unions and stuff and itās really difficult to get anyone to change that mindset. And so itās 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 wasnāt available for us and I think the fear is āWhat if people forget?ā and theyāre like āI really hated working from home when I needed to so weāre going to make sure everything is physical from now on, we want to make sure that weāre 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 Iāve interviewed for a job for example, and Iāve been told I canāt 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 Iām 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 concreate 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 theyāre not getting enoughĀ and like you mentioned with the shop hours, itās mainly people saying that Itās supposed to be for older people and vulnerable people and if you have an invisible disability, youāre maybe not immediately seen as vulnerable and Iāve seen the abuse that people have got for trying to use the disabled toilets in the past and I have as well and itās not right. We just need to change that pubic perception as soon as possible and Iām hoping that COVID-19, if thereās 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.Ā
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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 itās been great talking to you.
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Sophia: Thank you very much thanks.Ā
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Cathy: So it was really interesting to hear about Sophiaās experience and obviously sheās a very passionate disability rights campaigner and I think what sheās 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 weāre going to look at social interaction.Ā
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Erin: Yeah absolutely, great interview and great to hear from her again on this episode so finally weāre going to move onto writer and disability rights campaigner, Chloe Timms who is going to talk about her experience of lockdownā¦
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Cathy: Hi Chloe, thanks so much for joining us on The Disability Download, how has lockdown been for you so far?
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Chloe:Ā 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 Iām really, I would never normally describe myself as vulnerable but I think in this case itās a very accurate to use that word and I know that obviously I hope I wonāt 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 everyoneās saying ādonāt watch it too muchā it was kind of hard not to especially when it feels like youāre in the middle of history. I feel like itās 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.Ā
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Cathy: Yeah definitely, it has that kind of effect now everythingās calmed down a little bit.Ā
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Chloe: Yeah even things like supermarkets seemed to have calmed down a bit now so thatās reassuring.
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Cathy: Yeah definitely and Chloe youāre a writer and youāre 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.Ā
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Chloe: Itās 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 āOh my god what should I be doing in this time?ā and I think thereās a divide really between people who are being so creative and really embracing during this time which is great but thereās also the other side of it where your brain cannot cope with anything but whatās happening now. And I think thereās 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 whatās the point? Iāve 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, itās easier to be distracted because peopleās lives have changed their generally a bit more chatty because theyāre at homeĀ and theyāre not working, so you check your phone and youāve got five times more texts and itās very hard to just put that away and not check twitter and not check the news. Unfortunately my stepdad doesnāt know how to put his phone on silent and he gets the ābreaking newsā alerts and go off in the house and Iām half way through writing something and Iām thinking should I be checking the news so Iāve had my ups and downs with it Itās like what everyone says really, itās about keeping your normal routine as much as possible so I have got better now at getting back to doing that so Itās sort of been mixed really. I think Iāve found it easier in the last two weeks to cut off and just say right Iām 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 hasnāt changed, I still have the same amount of time but itās just kind of, thereās more distractions I guess which makes it a lot harder.Ā
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Cathy:Ā Yeah definitely, youāre a campaigner for disability rights ā thereās been lots of talk on twitter about how companies that werenāt able before to accommodate people working from home due to their disabilities obviously now weāve 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 ofĀ working from home and flexible working?
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Chloe: Yeah I think itās 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 everyoneās been able to that from the startĀ and itās kind of that unwillingness to change. Iād 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 weāre seeing it now itās a lot more widespread. I donāt know, Iād like to be optimistic but I donāt know whether weāll 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 wonāt 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 weāre going to be proās at this by the end of it, everyoneās going to be a zoom pro, so Iād like to think that when things go back to more normality things will change because itās now obvious it was always possible it just wasnāt always done.Ā
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Cathy: Yeah definitely, what are your lockdown plans looking ahead almost and do you have any advice for other people?
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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.Ā
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Cathy: Nice.Ā
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Chloe: Yeah weāre taking it in turns to be quiz master and honestly itās become something I so look forward to, and its funny really because in a way lockdownās made me feel more connected to friends and more sociable even though the group of friends Iām doing the quiz with some of them live not even five miles from my house but we donāt actually meet every week, we donāt meet that regularly but weāre making an effort to do our quiz every week and thatās great. I think it is hard to fill your days and I think the temptation is to just do mindless scrolling which isnāt great and things like that when its kind of pretty bleak out there. I donāt want to think ahead too much in terms of this Is what Iām going to do when itās all over because like everyone I think Iām aware that although thereāll 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 Iām still having care I kind of think I havenāt been able to isolate myself as much as I feel like I should be and I feel like thatās 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 extentĀ because obviously they have families and they go to the supermarket I canāt expect them to shut themselves away completely when I they go home and obviously its well-known now that thereās 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?
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Cathy: Oh really?
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Chloe: Oh yeah, I mean theyāve always had gloves and aprons, but masks werenāt really a thing. I mean my care company is great but at the beginning I donāt 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 youāre 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 dayĀ
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Cathy: Oh wow, yeah.Ā
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Chloe: And I feel like thatās 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 theyāre being as careful as they can be at home, but it is that kind of weak spot. I personally donāt know what would happen if one of my carers went to someone with COVID and then found that theyād been to me and then and some other people, I donāt know what the protocols are and I donāt think the company has been given advice either so, I know itās completely unprecedented and no-one really knows what they would do but I guess itās the same problems that care home are having but it is one of the things that I think itās 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 thereās 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 ā weāre stuck, thereās no way we can say well I just wonāt have care I mean I seriously considered cutting down my care and because my mumās 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.Ā
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Cathy: Yeah definitely, I think when Iāve spoken to other people on this podcast as well as looking at disabled influencers, theyāve literally said the same thing, you know am I being too paranoid? But I think youāre completely right in the sense that you know ā how can you not be in this situation you have to be so vigilant and careful and as you say, what weāre 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 donāt have the set up at home in order to be able to do that because either they donāt have the family support or might not have the socio-economic background available as readily to other people so yeah youāre completely right.Ā
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Chloe:Ā And like you say, Iām very lucky. I could potentially lose one call a day and ask my mum to do it but like you say, I shouldnāt have to and itās 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 Iām 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 youāre in a situation where perhaps where you necessarily havenāt 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 donāt know what the answer is to that and I donāt really know whether thatās 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 controlĀ as much as possible either by limiting how often they go out or where they go, what they do when theyāre in the supermarket but for those of us that rely on others itās a scary prospect and thatās one of the things that I think thatās made me most scared, most upset, over the last couple of weeks because I kind of felt like if I get this it wonāt be through any fault of my own but thereās 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.Ā
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Cathy: Definitely and itās completely legitimate to think that and its as you say everyoneās trying to have that control over their lives but really when external forces like this obviously a pandemic thereās only so much you can do and control but absolutely thatās such a good point to raise and talk about. Thank you for being on the podcast Chloe.Ā
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Chloe: No thanks for having me, itās been really good to chat.Ā
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Erin: Great points and thoughts from lots of different perspectives about coronavirus and what this means for disabled people and the world weāre 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 theyāre supporting and protect their families as well.Ā
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Cathy: Yeah and we donāt usually do this butā¦ Leonard Cheshire is a charity, as part of our charity you may or may not know that we provide care for people, itās just one of the many things we do. The demand for Personal Protective Equipment is higher than ever and itās expensive. Weāve just launched a fundraising campaign to help get our frontline line staff the equipment they need.Ā
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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, weāll put the link in the show notes. Weād 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.Ā
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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.Ā
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Erin: Yeah so why not help us shape the podcast ā 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 ānormalā?
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Cathy: Let us know, tweet us or just send us a good old fashioned email. Please give us a rating on whatever platform youāre listening on, share it with your mates and your family and most importantly please subscribe.Ā
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Erin: Also I think itās worth mentioning that if need support or know someone who needs support during this time, we do have a coronavirus page on our website itās packed full of useful resources definitely take a look at that as well. Thanks for listening and stay safe.Ā
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Cathy: Iām Cathy
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Erin: and Iām ErinĀ
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Cathy and Erin: And youāve been listening to The Disability Download.Ā