大象传媒

This is the full transcript of Ouch 鈥� the cabin fever podcast as broadcast on 19th銆赌November 2020 and presented by Emma Tracey.

emma - Hello, and welcome to the Ouch podcast. I鈥檓 Emma Tracey, 大象传媒 journalist and disability podcast maker. The Office for National Statistics has found that 4.2 million people have felt always or often lonely in the week of 1st November this year, and that鈥檚 up 60% since the beginning of lockdown in March. Of those surveyed, disabled people were far more likely to feel lonely, at 45% compared to 32% of the general public. On top of those already sobering statistics twice as many disabled people as non-disabled people have said that the pandemic has made their mental health worse.

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So why are disabled people feeling so much more lonely in and out of the pandemic, and how can we look after ourselves and each other to alleviate that isolation? To discuss this I鈥檓 joined by three fantastic disabled guests. First we have Elin Williams who blogs about being visually impaired and having ME. You鈥檝e just come out of lockdown, right? You鈥檙e in Wales, you work for Disability Wales?

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elin - Yeah, we鈥檝e just come out of lockdown a couple of weeks ago, so it feels very strange to have a bit of sense of normality in the country again but it鈥檚 still not normal.

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EMMA - Yeah, I鈥檓 sure. George Baker is a disability rights campaigner, a former MP candidate who has congenital muscular dystrophy, and who recently launched the Disability Union. George, what鈥檚 the Disability Union?

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george - The Disability Union exists to organise and support the 14 million disabled people in the UK so that we can fight to protect and enhance our rights and make sure we get the support we need in a society that currently doesn鈥檛 understand us.

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emma - I鈥檓 sure we鈥檙e going to hear quite a lot more about the Disability Union as we go through this podcast, because I think it kind of has quite a big relationship with loneliness and isolation amongst disabled people doesn鈥檛 it?

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george - Absolutely, yes.

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EMMA - We鈥檙e also joined by another award winning blogger. It鈥檚 Chloe Tear. Chloe鈥檚 got cerebral palsy and she鈥檚 blind and she works for disability charity, Scope. Where are you talking to us from today, Chloe?

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chloe - I鈥檓 in Leeds. So I work from home for Scope and I help to run their online community which supports disabled people and their families, or I work with the content design team.

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emma - Gosh. Working with the online community, you must have seen and heard a lot about loneliness and isolation over the last few months as well, have you?

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CHLOE - Yes, definitely. I think it鈥檚 been one of the main things that the community has been there for, whether it鈥檚 for friendship or just having the opportunity to know that you鈥檙e not the only one in that situation.

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EMMA - I mean, let鈥檚 stay with you, Chloe, as I鈥檓 talking to you. I mean, the first question, it鈥檚 the big one isn鈥檛 it? Why are the stats showing that disabled people are so lonely?

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CHLOE - Yeah, I think that鈥檚 quite truthful, from my own experiences, but also extremely sad that in today鈥檚 society we do feel alone. And I think that partly stems from how we feel in terms of where we fit within society. We are getting more access to things and more of a level playing field, but I think the fundamental stereotypes and kind of daily battles we have really does constitute to feeling alone.

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EMMA - And would you say you鈥檝e experienced loneliness yourself, Chloe, as a disabled person?

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CHLOE - Yeah, and I think that鈥檚 potentially more prominent during the pandemic. For a lot of people they know that there is an ending to isolation after the lockdown, but for disabled people there is no ending. If you think about people who have been shielding or people who are restricted to their house anyway I think it鈥檚 really important to remember that isolation doesn鈥檛 stop for them.

EMMA - Yeah. Elin, why do you think so many disabled people are feeling lonely?

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ELIN - Well, I think the pandemic has magnified a lot of inequalities, and that might be one of the reasons that disabled people do feel lonely. I work as a social media and communications officer for Disability Wales and we see a lot of comments online of people expressing their worries and their concerns, especially during the course of COVID and the impact it鈥檚 had on their life, and just highlighting how inaccessible some aspects of the world can be.

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And I think that鈥檚 definitely something that contributes to loneliness and isolation. Digital exclusion is a huge barrier for a lot of disabled people, so when everything moved on line it was opening some aspects of the world up for disabled people. It was also excluding others who didn鈥檛 have access to online technologies. So when everything was done through Zoom and everyone was living their lives online it could contribute to loneliness for other people who didn鈥檛 have access to that.

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And I guess for me loneliness kicked in more when things were opening up again and the restrictions were starting to ease. So when everyone was starting to make plans again and making plans to see friends and things like that, it did highlight my own loneliness because I don鈥檛 have the same opportunities to do those things because of my ME. So it was contributing to that feeling of isolation when people were going about their day to day lives again when that wasn鈥檛 as possible for me.

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EMMA - So do you think when people were going about their daily lives in a different way to you before the pandemic do you think it was almost worse after lockdown because people had been sort of in a similar boat to you in one way in that they had been at home and not able to do much?

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ELIN - Yeah, I think so. I mean when the lockdown was introduced in March it definitely felt like we were all in the same boat, and aspects of society were opening up to disabled people because things were moving online and for those who had access to that it was making things more accessible. So socialising could be accessible because everyone was doing it online. So for me there wasn鈥檛 as much planning having to go in to planning to do things with my friends and things like that because I wasn鈥檛 having to assign days to rest before going out somewhere and assign days to rest afterwards because it was more accessible to do that from home. So when people were starting to go back into society it was magnifying what we felt pre-pandemic.

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EMMA - Yeah. George, what do you think? Why so many disabled people felt lonely before the pandemic and feel lonely now and why it鈥檚 so different to the rest of the population?

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george - Well, the truth is that we live in a society where disabled people are excluded from a lot of things because society just isn鈥檛 set up for them. There have been improvements, particularly in physical access in the last 25 years after the Disability Discrimination Act, but there鈥檚 all sorts of things that prevent people from accessing the normal opportunities and services and public places that other people are able to enjoy. And as a result it means that it鈥檚 much easier for disabled people to feel isolated, particularly if you have a very visible disability or something that people don鈥檛 understand, maybe something that鈥檚 more invisible, then it can be hard to make friends and identify with people who don鈥檛 really understand you.

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So there鈥檚 a social attitude issue there as well, where because of just the way that society is set up quite often somebody will feel they鈥檝e never met somebody who鈥檚 disabled, they鈥檝e never been friends with somebody who鈥檚 disabled, and often they just don鈥檛 know how to talk to us or interact with us. And the result of all these things is that you get barriers that exclude people physically and barriers that exclude people socially as well as attitude. And now with lockdown obviously that makes it even harder for people to access the things outside of their home that they normally might be able to manage. And like seeing people every day it鈥檚 gone from maybe enjoying family visiting them a few times a week or going out once a week to the pub, they鈥檙e now in a situation where they haven鈥檛 left their home since March. That鈥檚 true for a lot of us who are shielding. It鈥檚 certainly true for me. I鈥檝e been on drives and things like that in the countryside but other than that I鈥檝e been solely at home since March.

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EMMA - Do you feel more lonely now that the pandemic is here than you did before?

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GEORGE - I would say yes. I鈥檓 very lucky though, I鈥檓 very privileged, I鈥檝e a very strong support network; I have excellent carers and family and friends. So I鈥檓 one of the lucky ones, I鈥檝e been looked after and supported and I feel okay. The hardest thing is that for people like myself who are clinically extremely vulnerable to the Coronavirus there isn鈥檛 really an end in sight. You know, until I鈥檝e been vaccinated or until the prevalence of the virus goes down enormously my life won鈥檛 change, I will have to stay here to protect myself.

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EMMA - Why do you think loneliness is particularly affecting young people? I mean young people, young disabled people. This new study that the Office of National Statistics has brought out says that half of the young people between 18 and 24 surveyed said that they feel more lonely now than they did before the pandemic. And an older Scope study actually said at one point that 85% of 18 to 34 year olds have felt lonely. Why are young disabled people being hit so hard?

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CHLOE - I think young disabled people have been affected more with loneliness because social media can be amazing, but it can make you feel lonely. Because you take Instagram for example, it is a person鈥檚 highlight reel, it rarely shows the down days. Especially since lockdown when things started to ease I鈥檇 see friends meeting up and seeing each other and doing things and that just kind of emphasised the gap between myself and my peers I think. For me that鈥檚 why it鈥檚 so important that I do have a large following of disabled people, because by following other young disabled people we are proactively enabling each other to showcase the reality and to share the good and the bad, which does make you feel less alone.

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EMMA - Have you anything to add to that, Elin?

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ELIN - Yeah, I can only echo what Chloe said really. For me, social media and the online disability community has definitely helped me to combat some elements of my own loneliness, because when I was a teenager and a young adult - well, I鈥檓 still a young adult - I did feel like I was the only one and I didn鈥檛 necessarily understand that there was a whole world of disabled people out there that were feeling the same as I was. So having that community and somewhere where you can express yourself is vital in terms of recognising that you鈥檙e not alone.

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emma - Do you think I鈥檓 right in saying that disabled people are more likely to live alone as well? It feels like that鈥檚 quite a big thing as well.

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GEORGE - A lot of people do live alone. It鈥檚 not just family and friends I don鈥檛 see, for a lot of people, like you say, their social care has been reduced. And living on your own and not having really any contact with other people in the same room as you is horrendous for your mental health.

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EMMA - Yeah, because of course there鈥檚 lots of accessibility reasons for people to live at home alone as well, and sometimes people need an extra PA room, etc, etc.

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GEORGE - Yes, absolutely. I mean that鈥檚 certainly true for me. My carers currently live in at the moment mostly, which has helped with my mental health I think. But it is difficult when you鈥檙e only seeing the same people day in, day out.

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EMMA - Yeah.

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CHLOE - How have you found that, George, in terms of the practicalities? I know having PA鈥檚 around is amazing, but then I imagine you almost need your own space as well.

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george - I鈥檓 incredibly lucky. And actually I would like to just say a shout out to the PA鈥檚 who have helped me through the pandemic. Ryan, who鈥檚 worked for me for about five years, he鈥檚 now one of my best friends, Emily who鈥檚 been with me through a lot of the pandemic, she鈥檚 amazing. And another lady, Lauren, you know, all these people put their life on hold for me. A wonderful thing, actually a positive thing to have come out of the pandemic is that I have built really strong relationships, working relationships, friendships, with the people who care for me.

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EMMA - And do you mean that your PA鈥檚 put their lives on hold鈥�? Do you mean they basically shielded as well to keep you safe?

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GEORGE - Yes. Ryan came to live with me basically and the other lady, Emily, she completely isolated while she was working, they had kind of a three week on, three week off rota, so she was isolating with me during one three week. The other three weeks she would see her family for a week, then isolate entirely for two weeks. And actually, I didn鈥檛 know this until afterwards, but she spent a week living in a tent in her mum鈥檚 garden because her mum had gone back to work and she didn鈥檛 want to endanger me by being in the same house as someone who was going out and about. So they鈥檝e taken extreme measures for me and I鈥檓 incredibly grateful to be that cared for.

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EMMA - That鈥檚 amazing. She stayed in a tent. That鈥檚 so cool. I mean, the thing that I suppose PA鈥檚 and other people around you when you鈥檙e disabled, I mean you had such a great experience but it kind of reminds me of something I think Elin wrote about being lonely in a crowded room?

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ELIN - Yeah, definitely. I wrote about this a couple of years ago actually, because it was something I felt quite heavily when I was in school especially. I felt really lonely in a room full of people because I didn鈥檛 necessarily know who was there and if there was anywhere to sit or anything like that. So it made me feel really isolated and at the time I didn鈥檛 feel like anyone understood my vision impairment that much, so it definitely added to that feeling of isolation.

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EMMA - Yeah, I think I鈥檝e really felt that as well in that you were on the 大象传媒 talking about loneliness and I was in a choir at that time and they were saying, "Oh, we saw this girl on the 大象传媒 and she鈥檚 blind and she was explaining how it can come with a lot of loneliness." And my first thought was oh no, they鈥檝e done an article about loneliness and they鈥檝e really brought blindness forward and what鈥檚 that going to be like for blind people? People will think that every blind person is lonely. But then we got into a conversation with it and I was explaining to them that sometimes at the break time of choir if no one is sitting beside me or standing beside me talking to me I can be sitting on a chair in a room with a hundred people and feeling terribly lonely. I think that was one of the loneliest times I鈥檝e had, is with lots of other people.

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GEORGE - It is interesting actually. I must admit that living with three people during this pandemic, it is very difficult when we all want someone all day every day. You have to have a high level of emotional maturity to make sure that we鈥檙e all communicating so that you don鈥檛 start to feel stuck within yourself. I have had a lot of experiences in my life where I鈥檓 sat in a room with a carer next to me talking to them and yet have never felt so alone.

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EMMA - Because you鈥檙e stuck talking to your carer because people think that you鈥檝e got someone with you and then therefore they don鈥檛 come over. So you end up speaking to your support worker, your support person, and you don鈥檛 end up speaking to the people at the event.

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GEORGE - Yes, it鈥檚 absolutely true, I鈥檝e had that happen a lot.

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EMMA - What can be done to make disabled people feel less lonely or to help them to feel less lonely, from a kind of a government big organisation perspective?

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chloe - I think it鈥檚 important that loneliness is looked at, because I think that goes hand in hand with mental health. But I think, rightly so in a lot of circumstances, it鈥檚 loneliness of elderly people that is focussed on yet I feel like young disabled people are almost forgotten in that. I feel like especially those who have been shielding, if they鈥檙e shielding as a young adult they鈥檝e not necessarily had any support and especially support which hasn鈥檛 been tailored to them. I think there needed to be something around that.

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EMMA - And any thoughts on what that might be, or is that their job to figure that out?

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GEORGE - If I could jump in on that, I鈥檇 say I think that there is an awful lot that the government can do to help disabled people through this pandemic that hasn鈥檛 been done. The support provided to disabled people should be designed by and for disabled people, and I think probably one of the biggest things to come out of this pandemic is it鈥檚 become obvious that the general level of disabled people is extremely low anyway. Now services are not designed around us and our needs and a lot of people, they feel that they鈥檝e been completely ignored and actually to tackle loneliness I think probably the biggest thing the government could do would be to make sure that their basic needs are met properly. That they鈥檝e got food and adequate housing and proper social care so that they can at least enjoy the things that they can still access. And I would say the other thing that would be wonderful to see from the government is a real effort to help disabled people support each other, to find ways to build networks of disabled people so that we can communicate and support each other and tell the government what they need.

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ELIN - Yeah, I completely agree with that. I think it鈥檚 really important that conversations are happening with disabled people and that it鈥檚 recognised that loneliness can affect anyone, no matter what age, no matter what their impairment. It can happen to anyone, so it鈥檚 important that conversations are created around that topic and that it is recognised that it鈥檚 something that鈥檚 a really common issue, and it鈥檚 more common than we think it is.

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emma - A spokesman for the Loneliness Minster told Ouch, "We are working hard to reduce loneliness among people of all ages and backgrounds, and know that having a disability can put you more at risk. Since the pandemic began we have given loneliness funding to charities including Sense, RNIB and Carer鈥檚 Trust who offer targeted support to people with disabilities and those who care for them." What do you do to stop yourself feeling lonely?

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ELIN - So there are a couple of things that I do. As I said, the online disabled community helps me a lot in terms of helping me to recognise that I鈥檓 not on my own and that there are people out there who are experiencing the same things. Obviously joining in with those conversations is not for everyone, but something that also helps me is my writing and just having that outlet to channel my thoughts into and it allows me to decompress them in a way that I wouldn鈥檛 otherwise be able to do. So that鈥檚 definitely something that helps me to navigate loneliness and try to tackle it as best as I can.

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CHLOE - I think I can really resonate with what Elin said. I think writing is such a powerful tool to kind of process the things you鈥檙e going through, but also to read other people鈥檚 work to know you鈥檙e not alone. And I think for me especially I need to kind of remind myself to talk, whether that is to my family or my friends. You know, I live at home and have an amazing support network but it can be challenging I think during the lockdown to kind of keep that communication going, especially when it can feel a bit like groundhog day. But for me I think reading has been really important during lockdown. I鈥檝e read more books this year than I probably have ever read, and I think that鈥檚 because it鈥檚 almost a form of escapism and to kind of just get stuck into something else.

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GEORGE - I would definitely agree with everything that Chloe and Elin have said and I鈥檇 say the biggest thing is I would just say reach out. Reach out to your friends and family, reach out to other disabled people, find places where you can feel supported, where you can get that kind of sense of understanding and solidarity that is so difficult to find. And I鈥檇 also say please, if you have no one else to reach out to or if you want someone else to reach out to please do reach out to the Disability Union. You can find us on Facebook on the internet. We鈥檙e here to support people through this pandemic. And definitely writing as well for me is something that I do consistently. I鈥檇 say as well something as simple as audiobooks and you can just lie down, shut off the room, listen to an audiobook, it really helps relax you. It can help combat those feelings of isolation I think.

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EMMA - So I鈥檝e got two questions. I鈥檝e got what do you do to stop yourself feeling lonely and then what are your tips, which I kind of think were the same question and you鈥檝e kind of answered it, but if there鈥檚 anything else you want to add?

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GEORGE - One thing that I would say is focus on the things that you can do that will be of benefit to you in the future. Find something to focus on that can be productive. And maybe it鈥檚 learning a skill. For me when lockdown first started I started to learn German and then I enrolled on some college courses which I then dropped because I started the Disability Union.

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EMMA - Well, I was going to say, you鈥檙e one of those lockdown people, George. You鈥檙e one of those productive lockdown people.

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GEORGE - I am, and I must say I recognise that I鈥檓 just very, very lucky, not everybody has that. But I would encourage you whatever you can do to find something to focus on. Think of something that鈥檚 important to you that you might otherwise not have time to focus on.

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CHLOE - I think I鈥檇 play devil鈥檚 advocate there and yeah, I think being productive for me is really beneficial, but also during lockdown there鈥檚 the importance of you don鈥檛 have to be productive. You know, I鈥檝e written my blog alongside education and then went straight into employment whilst freelancing. I like to be busy, but I think lockdown has kind of taught me to slow down.

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ELIN - I can definitely relate with Chloe with the fact that I鈥檓 also a workaholic, I do a lot of things, but it鈥檚 so important to take time for yourself as well, and to recognise when you need to take a step back. Especially if you鈥檙e feeling overwhelmed with loneliness and isolation you deserve to take some time for yourself and to do something that you enjoy.

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[Jingle: Ouch]]

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Kayleigh - I just wanted to share this with you all because it鈥檚 brill. I had an email yesterday from a lady called Fuchsia. She鈥檚 disabled, lives and works alone at home, and since lockdown she adopted a cat from Cats Protection who is also disabled, she鈥檚 a blind cat, and she said, "My cats have saved me from my darkest times and are always there when I feel like I鈥檓 not coping." So there鈥檚 another option, there鈥檚 another way that we can sort of help battle loneliness, we all need to adopt cats.

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emma - Oh. That鈥檚 Kayleigh, the producer, and obviously you鈥檝e been doing lots of research around disability and loneliness for this podcast. And I mean, what I would say is there have been so many people that we could have had on and that we might have had on, and what I would say is if you have a story about loneliness, about combating loneliness, or about just feeling really lonely, I know we haven鈥檛 spoken to someone with a learning disability today and there鈥檚 lots of other impairments that we鈥檝e not covered today, so feel free to email us,

ouch@bbc.co.uk. You can send us a voice note if that鈥檚 easier, draw us a picture, whatever, and you can find us on social media on Facebook and Twitter @bbcouch. You鈥檒l find lots more content around loneliness on the 大象传媒 this week, on TV, radio and online. Thank you so much for listening, and we鈥檒l talk to you soon. Bye.

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