âI need to remind myself to talk to peopleâ
Loneliness levels in the UK are at their highest â so how are disabled people coping?
The first week of November saw the clocks go back and the highest levels of loneliness since the coronavirus pandemic began, according to the Office for National Statistics.
It said 4.2million people felt âalways and often lonelyâ during that week, but previous studies have found disabled people are far more likely to feel lonely than non-disabled people.
So, how do you battle feelings of isolation?
±«Óătv Ouchâs Emma Tracey spoke to award-winning bloggers, Elin Williams and Chloe Tear, and disability rights campaigner George Baker to find out their top-tips.
Produced by Keiligh Baker and Drew Miller Hyndman.
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If you or someone you know is affected by any of the issues raised in this podcast, ±«Óătv Action Line has a list of organisations and charities offering advice and support.
Full transcript
This is the full transcript of Ouch â the cabin fever podcast as broadcast on 19thă¶ÄNovember 2020 and presented by Emma Tracey.
emma - Hello, and welcome to the Ouch podcast. Iâm Emma Tracey, ±«Óătv 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 thatâs 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 Iâm joined by three fantastic disabled guests. First we have Elin Williams who blogs about being visually impaired and having ME. Youâve just come out of lockdown, right? Youâre in Wales, you work for Disability Wales?
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elin - Yeah, weâve 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 itâs still not normal.
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EMMA - Yeah, Iâm 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, whatâs 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 doesnât understand us.
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emma - Iâm sure weâre 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 doesnât it?
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george - Absolutely, yes.
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EMMA - Weâre also joined by another award winning blogger. Itâs Chloe Tear. Chloeâs got cerebral palsy and sheâs blind and she works for disability charity, Scope. Where are you talking to us from today, Chloe?
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chloe - Iâm 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 itâs been one of the main things that the community has been there for, whether itâs for friendship or just having the opportunity to know that youâre not the only one in that situation.
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EMMA - I mean, letâs stay with you, Chloe, as Iâm talking to you. I mean, the first question, itâs the big one isnât it? Why are the stats showing that disabled people are so lonely?
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CHLOE - Yeah, I think thatâs quite truthful, from my own experiences, but also extremely sad that in todayâs 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 youâve experienced loneliness yourself, Chloe, as a disabled person?
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CHLOE - Yeah, and I think thatâs 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 itâs really important to remember that isolation doesnât 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 itâs had on their life, and just highlighting how inaccessible some aspects of the world can be.
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And I think thatâs 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 didnât 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 didnât 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 donât 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 wasnât 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 wasnât as much planning having to go in to planning to do things with my friends and things like that because I wasnât 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 itâs 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 isnât set up for them. There have been improvements, particularly in physical access in the last 25 years after the Disability Discrimination Act, but thereâs 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 itâs much easier for disabled people to feel isolated, particularly if you have a very visible disability or something that people donât understand, maybe something thatâs more invisible, then it can be hard to make friends and identify with people who donât really understand you.
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So thereâs a social attitude issue there as well, where because of just the way that society is set up quite often somebody will feel theyâve never met somebody whoâs disabled, theyâve never been friends with somebody whoâs disabled, and often they just donât 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 itâs gone from maybe enjoying family visiting them a few times a week or going out once a week to the pub, theyâre now in a situation where they havenât left their home since March. Thatâs true for a lot of us who are shielding. Itâs certainly true for me. Iâve been on drives and things like that in the countryside but other than that Iâve 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. Iâm very lucky though, Iâm very privileged, Iâve a very strong support network; I have excellent carers and family and friends. So Iâm one of the lucky ones, Iâve 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 isnât really an end in sight. You know, until Iâve been vaccinated or until the prevalence of the virus goes down enormously my life wonât 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 personâs highlight reel, it rarely shows the down days. Especially since lockdown when things started to ease Iâd 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 thatâs why itâs 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, Iâm still a young adult - I did feel like I was the only one and I didnât 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 youâre not alone.
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emma - Do you think Iâm right in saying that disabled people are more likely to live alone as well? It feels like thatâs quite a big thing as well.
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GEORGE - A lot of people do live alone. Itâs not just family and friends I donât 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 thereâs 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 thatâs 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 youâre 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 PAâs around is amazing, but then I imagine you almost need your own space as well.
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george - Iâm incredibly lucky. And actually I would like to just say a shout out to the PAâs who have helped me through the pandemic. Ryan, whoâs worked for me for about five years, heâs now one of my best friends, Emily whoâs been with me through a lot of the pandemic, sheâs 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 PAâs put their lives on holdâŠ? 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 didnât know this until afterwards, but she spent a week living in a tent in her mumâs garden because her mum had gone back to work and she didnât want to endanger me by being in the same house as someone who was going out and about. So theyâve taken extreme measures for me and Iâm incredibly grateful to be that cared for.
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EMMA - Thatâs amazing. She stayed in a tent. Thatâs so cool. I mean, the thing that I suppose PAâs and other people around you when youâre 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 didnât 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 didnât 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 Iâve really felt that as well in that you were on the ±«Óătv talking about loneliness and I was in a choir at that time and they were saying, "Oh, we saw this girl on the ±«Óătv and sheâs blind and she was explaining how it can come with a lot of loneliness." And my first thought was oh no, theyâve done an article about loneliness and theyâve really brought blindness forward and whatâs 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 Iâve 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 weâre all communicating so that you donât start to feel stuck within yourself. I have had a lot of experiences in my life where Iâm 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 youâre stuck talking to your carer because people think that youâve got someone with you and then therefore they donât come over. So you end up speaking to your support worker, your support person, and you donât end up speaking to the people at the event.
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GEORGE - Yes, itâs absolutely true, Iâve 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 itâs 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, itâs 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 theyâre shielding as a young adult theyâve not necessarily had any support and especially support which hasnât 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, Iâd say I think that there is an awful lot that the government can do to help disabled people through this pandemic that hasnât 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 itâs 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 theyâve 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 theyâve 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 itâs really important that conversations are happening with disabled people and that itâs recognised that loneliness can affect anyone, no matter what age, no matter what their impairment. It can happen to anyone, so itâs important that conversations are created around that topic and that it is recognised that itâs something thatâs a really common issue, and itâs 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 Carerâs 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 Iâm 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 wouldnât otherwise be able to do. So thatâs 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 youâre going through, but also to read other peopleâs work to know youâre 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. Iâve read more books this year than I probably have ever read, and I think thatâs because itâs 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 Iâd 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 Iâd 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. Weâre here to support people through this pandemic. And definitely writing as well for me is something that I do consistently. Iâd 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 Iâve got two questions. Iâve 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 youâve kind of answered it, but if thereâs 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 itâs 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, youâre one of those lockdown people, George. Youâre one of those productive lockdown people.
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GEORGE - I am, and I must say I recognise that Iâm 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 thatâs important to you that you might otherwise not have time to focus on.
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CHLOE - I think Iâd play devilâs advocate there and yeah, I think being productive for me is really beneficial, but also during lockdown thereâs the importance of you donât have to be productive. You know, Iâve 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 Iâm also a workaholic, I do a lot of things, but itâs so important to take time for yourself as well, and to recognise when you need to take a step back. Especially if youâre 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 itâs brill. I had an email yesterday from a lady called Fuchsia. Sheâs disabled, lives and works alone at home, and since lockdown she adopted a cat from Cats Protection who is also disabled, sheâs a blind cat, and she said, "My cats have saved me from my darkest times and are always there when I feel like Iâm not coping." So thereâs another option, thereâs another way that we can sort of help battle loneliness, we all need to adopt cats.
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emma - Oh. Thatâs Kayleigh, the producer, and obviously youâve 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 havenât spoken to someone with a learning disability today and thereâs lots of other impairments that weâve not covered today, so feel free to email us,
ouch@bbc.co.uk. You can send us a voice note if thatâs easier, draw us a picture, whatever, and you can find us on social media on Facebook and Twitter @bbcouch. Youâll find lots more content around loneliness on the ±«Óătv this week, on TV, radio and online. Thank you so much for listening, and weâll talk to you soon. Bye.ă¶Ä
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