Transcript: Personal stories of coping in lockdown

Four people share their stories of coping in lockdown with a disability.

Podcast Episode: Personal stories of coping in lockdown


What follows is a transcription of the audio recording. Due to differences between spoken and written English, the transcript may contain quirks of grammar and syntax.

MM - Michael McEwan
CB - Chris Baird
DF - Dr Danielle Farrel
WG - Wesley Grierson
LK - Lindsay Kinloch

MM On this edition of I went to hear people’s views that have a disability, and how it impacts on their lives, in the current crisis that we’re facing. First up I spoke to local campaigner and national campaigner, Chris Baird. Chris is from Barrhead and he tells us his views on the coronavirus. Okay, Chris, so what support are you getting at the moment?

CB What I’m getting just now is my partner’s had to take time off work. She’s my primary carer and when she’s at work I go up to my parents. Because they’re in the 70s group they’re supposed to be self-isolating, as am I. I can’t go up there so my partner’s taken time off work to be there to support me.

MM Can I ask you now about the information, as a disabled person yourself, do you think that there’s enough information out there and do you think that information is accessible to everyone?

CB No I don’t think there’s been a lot of information out there, in particular for disabled people. We keep getting classified in this vulnerable group, which is really quite disempowering language and negative. We’re at higher risk, yes, because of our underlying health conditions or impairments, but that doesn’t automatically make us vulnerable. As I say, it’s quite disempowering language, as if we’re weak, which we’re not, and we are at risk from the virus because of our impairments as I said, but we’re also at risk because of the public bodies that are not asking us, because they don’t understand what our needs are, but they won’t do that unless they ask disabled people or disabled people’s-led organisations. Disabled people are used to being creative in their everyday life to address the many barriers that we face, so that’s included in this time, but I don’t think local authorities or the Scottish Government have been engaging with disabled people’s organisations as far as I can tell from what information is available to me. I think it’s positive that the Scottish Government, in all the briefings, that they’re using a sign interpreter, and it’s quite noticeable that down south they aren’t doing that, and I think that’s quite a glaring omission from down south, but I think credit to up here, that they are using signers for when they’re doing a public broadcast, but in a wider role, no. There’s too much uncertainty for disabled people. There’s not a lot of information out there. A lot of disabled people are struggling to get food and medicines and there doesn’t seem to be a coordinated approach to identifying who those people are and ways of getting food and medicines to them that they obviously rightly need.

MM You mentioned there, Chris, about the barriers. Can you just tell us some of the barriers that you’re facing at the moment?

CB Personally I’m facing the same barriers as the wider public, only having to go out for essentials, and I’m not even doing that, going to the shops. I don’t want to take the chance, but I’m more concerned for other disabled people who are seeing cuts to their social care packages or are seeing their social care package cut altogether. Some people are making the choice of not asking the support to come in because they don’t want to take the risks because the PAs have all been going to other people and might be passing it on, especially the lack of personal protective equipment, which I think is a real big issue as well. So I’m also concerned about the disabled people’s social care, that people are having to sleep in their wheelchairs, that they’re not being able to get dressed or washed because they’re not getting the right support or the support has been cut. So that’s a big concern for me. Also a big concern as well is that I’ve been hearing about a lot of disabled people being contacted by GP surgeries and asked to sign Do Not Resuscitate notices, DNRs, which is really quite concerning. Also I’m hearing about people as well being asked by their GP practices to put on their notes that if they become unwell that they’ve not to be taken to hospital, and that’s discrimination. Disabled people are not being treated equally and fairly as the rest of the population with these DNR, Do Not Resuscitate, notices. It’s discriminatory based on impairment, and also I think that’s what’s been happening with older people as well, and there’s a lot of concern around what’s happening in care homes. Again it’s highlighting this issue about how as a society we value people who provide that vital social and personal, the support and the care. So it shows you how much we value that and it shows you how much we actually value the people like ourselves that require that vital social and personal care as well, and I think this coronavirus is again just austerity. It’s disproportionately negatively impacting on disabled people and it’s a real big concern as well, because as we’ve seen through austerity and other ways through society, that disabled people are very often not even an afterthought, we’re at the bottom of the pile, and I think that’s just going to be happening, and it is happening just now with the present situation, that disabled people aren’t even on the agenda, and that’s really concerning.

MM How are you keeping in contact with your mum and dad, but also your family and friends at the moment, Chris?

CB Like most other people it’s just through a telephone. I’ve just started using Zoom, which is a useful way to keep in contact with family and friends and colleagues and suchlike. So mostly on the phone and via devices and apps like Zoom. Again, a lot of disabled people don’t have access to IT technology. Half of those who are living in poverty are disabled themselves or belong to a household in which a disabled person lives, and a lot of the time disabled people can’t afford broadband. So they’re isolated at the best of times, but even more so with this pandemic, that disabled people are getting pushed further and further into social isolation and poverty as a result of this.

MM Next up we’ll speak to Dr Danielle Farrel. Danielle Farrel set up her own business two or three years ago, looking at self-directed support. She offers her services to families all over Scotland and also different organisations, about self-directed support. First off, Danielle, can you tell us a bit about your business that you have set up?

DF So my business is called Your Options Understood. Now I set it up originally in 2015 to use my experience of living with a disability to help support others. So I live with cerebral palsy, and I don’t claim to know everything there is to know about living with a disability, but I know my experiences. So that’s kind of where my thinking behind it came from in doing Your Options Understood, which I set up after completing my PHD at uni, but I provide a range of services including advocacy, staff training and support with the self-directed support process.

MM I know that you have been busy with your website design. How have you been adapting your business in lockdown?

DF Yeah, so right now as you said I’m concentrating on the new website. So hopefully we get to the other side of the coronavirus crisis, but as well as that I wanted different platforms to maybe help Your Options Understood launch an e-learning platform, well I guess as well as rather than instead of, so organisations can purchase the training modules instead of or as well as me going out and delivering it face-to-face, if we ever get back to some sort of normality, and as well as that I’ve been using apps and things and using software such as Zoom and Teams to carry on having like board meetings and just general contact with partners and all the organisations that I work with, and just this afternoon before this interview I was contacted by an organisation that helps third sector organisations source funding, and they had contacted me to let me know that there’s various sources of funding available. So now it’s just about considering these sources of funding and I need to decide whether any of them are appropriate to support me to develop and continue to grow my business using different formats, because of the crisis, if that makes sense?

MM Okay, so let’s speak about your own issues at the moment. What has been the hardest thing to cope with during the crisis, on a personal level?

DF Well, due to living with cerebral palsy I require support on a daily basis for daily living tasks. I use various providers and I also employ my own staff, so I’m also an employer as well, but I’ve been in contact with both of the providers that I use as well as in discussions with my own staff. I’m quite fortunate I guess in the sense that from a provider point of view it hasn’t had much of an impact yet. I know that could possibly change as we go through the crisis, but right now the biggest change I’ve maybe seen is having to have discussions about like adjusting my times a wee bit. So maybe like having my dinner support maybe slightly later than what I’m used to, but that’s fine. I’ve said to the providers that as long as they communicate these things with me, I understand that we’re all dealing with the same crisis at the moment. It’s a bit about everybody being as flexible as they can I guess, without actually taking the mick and maybe I guess putting my support too late, if you know what I mean?

MM Finally, Danielle, do you think that there is enough accessible information out there for people with learning disabilities?

DF From what I’ve seen, organisations are doing their best to make this information accessible but I think one of the challenges that they probably have is making information accessible but at the same time not scaring people. I’ve said a lot in the last couple of days that even after the crisis when we’re at the other side of it, I guess it’s going to be a new normal.

MM Yeah.

DF It’s not going to be normal as we know it, up until this happened. From my point of view I think we’re probably going to continue to use programs such as Zoom and various things to carry on even when the restrictions are lifted, but from like a support point of view I’m not sure whether there’ll be some sort of restrictions in place where providers and PAs have to continue to wear some sort of PPE even after the crisis, to keep themselves and those who need support safe. I’m not sure. I think that’s the biggest thing, is that organisations and individuals are going to have to work together, because nobody knows what the new normal will be. We can speculate but nobody knows for sure, and I think it’s just about accepting that it’s going to have to be a learning curve together.

MM Next up we spoke to a local campaigner from Glasgow, Wesley Grierson, and he spoke to us about the current crisis. Wesley’s a volunteer at a club based in Glasgow called Include Me 2. Do you think that there’s enough information out there for people with learning disabilities?

WG Well, to start with I think at the start there didn’t seem to be a lot of information out there for people with learning disabilities in regards to the coronavirus situation. I still think now it’s gradually getting better. There seems to be a bit more information coming out but I still think there’s a lot of other people who are struggling to understand what the effects of coronavirus are, and also what to do in the situation, because we’re all going through it at the moment. So I still think that there still needs to be accessible information provided for those who still don’t understand what coronavirus is and what it’s doing to their lives.

MM And do you understand the kind of steps at the moment?

WG Yeah, I do have an understanding of what to do in the coronavirus crisis. There’s a lot of other people who still find it difficult not just to understand what to do but it’s like what do they do, how can they get help, how can they find out about help, how can they go about getting the right support through the coronavirus. Whereas, there’s people who’ve got families, there’s people who’ve got friends around them who will help provide that support where they can go to, who they can speak to. So there are people who have got that backup and support.

MM You were talking about your family and friends there. How are you keeping in contact with them at the moment?

WG Well I’m keeping in contact with my sister, and of course we keep in contact with each other. Like if I need things she’ll either get them for me or if she needs things then it works both ways. So I still keep in touch with my sister, but we need family at this moment in time because as I said most of us have got family but some of us haven’t got as many family and friends around us, which we should have and sadly we don’t. So again I’ve been keeping in contact with my sister. She’s been helping me as well, so it’s been great.

MM So you were telling us about a great way of keeping in contact with people. Tell us a bit about the Include Me 2 club that you’ve been involved in, and how are they contacting the members at the moment?

WG Well, Include Me 2 club, what we’ve been doing is we’ve been reaching out to as many other members on social platforms like Facebook, we’ve been using Zoom, which is a great way of actually interacting with other people. Those who are socially isolated, all of us, most of us are socially isolated, but we go online and we get them involved and we always say to them, “If you’re stuck or if there’s anything that you need, contact Include Me 2. They’ll do what they can to help you. Also come and speak to us. Come and join our activities online”, because we do a lot of activities. Recently we’ve been doing a lot of games. We’ve been doing like Deal or No Deal, Countdown. We’ve been doing a lot of other games like Hangman, Play Your Cards Right. So these are games that we’re still trying to adapt, we’re still trying to keep going, because a lot of the members miss going to the clubs every week, and now this pandemic is having an effect and it will continue for the next couple months or so. So what we’re doing during that time is we’re trying to break the isolation and the boredom so that everybody can actually come and get involved and chat to us online, even though they might not be at the clubs every week, but we’re still doing something online that is absolutely vital and that’s what’s needed. That’s what’s needed, is that we need to continue to stop the boredom, the isolation, and say to the members, “Look, come and get involved and chat to us online”, and they love it, Michael. You should see their faces like every night, every day of the week. They love it. It’s great and we do like Facebook Lives, we do Lives as well. We do like chat shows, music shows. So everybody can still come and get involved, and that’s basically what we’ve been doing over the past two weeks or so, and we will continue to do it for the foreseeable future until things start to gradually get back to normal.

MM And how are you feeling with your kind of mental health issues and stuff? How are you adapting to all this?

WG At first I thought that it’s going to be quite daunting, but I think like I’m getting used to it. I’m getting used to it now ‘cause it takes a bit of getting used to at first. It’s hard at times, Michael. I mean I can’t pretend that it’s easy but I still always try and find something to do to keep myself occupied.

MM Finally we’re going to hear from Lindsay Kinloch. Lindsay used to work for the Scottish Consortium for Learning Disabilities. Lindsay is unemployed at the moment and she is giving her views about the coronavirus and how it impacts on her daily life. So Lindsay, do you think that there’s enough information out there for people with a disability, or anybody, to understand what COVID-19 is?

LK I feel that in terms of COVID-19 there isn’t an awful lot of accessible information out there for people with a disability. I think a lot of organisations are trying their best to keep up with the news but I think it’s not always possible, especially with a pandemic like this one, which is spreading like wildfire. So the information will be doing that as well, so it’s hard to keep up. I think there’s also a lot of scary information. It’s difficult to know what information is true referring to people with disabilities and what isn’t true. So it’s difficult to discover that information and get to the bottom of what you need to know.

MM Do you think that there should be more organisations, disability or mental health organisations, putting easy read information out there?

LK I think yes. I think everybody’s doing a good job to try and keep up with the times we’re going through at the moment. I think they’re doing their best but in terms of mental health itself I think it’s bringing that more to the front in people’s lives. So I think people are understanding a little bit more of how mental ill health affects people.

MM And you were telling me, Lindsay, about your support. Now I know that you’ve not got carers and stuff. You said to me that your mum and dad are kind of like supporting you in a way. So if you wouldn’t mind to explain a wee bit about what you need support with and what was the difference before this that you didn’t need support?

LK I’ve never really been upfront with support that I get. Everybody needs an element of support in their life with different things. I have lots of different types of disabilities. So I’ve got a learning disability, I’ve got a physical disability and I’ve also got a few medical conditions as well. With it you wouldn’t expect me not to have bad mental health, with all of that, ‘cause a lot of people know me as bubbly Lindsay, but I actually suffer quite badly with mental health problems. I get support to find my feet again, when I’m cooking different dishes. I like to try and learn myself. So I just found out that the learning style that I learn from is actually learned through systematic approaches, so systematic instruction.

MM Mmmhmm.

LK So somebody else will show me how to do it and then I’ll go away and then I’ll do it myself.

MM So, Lindsay, how are you, leaving all the support aside at the moment and what have you, but how are you adapting to all this change? I mean how are you coping with it?

LK Do you know, it’s kind of difficult for me to describe how I’m coping at the moment. I’m a wee bit confused about the time.

MM Mmmhmm.

LK And I’m just figuring out the things that I like to do that doesn’t involve going out. I’ve always been a creative writer so I’m trying to get back to that again, but sometimes all writers have writers block, don’t they?

MM Yeah. Yep.

LK So I get that a lot. I have Lego. I like to do Lego. Not many people know that I’m actually quite a good computer gamer. I like to play computers. If you think about it, I spend time in and out of a wheelchair, so I know what it’s like to actually feel like you’re going through a lockdown your whole life.

MM Yeah.

LK I think many other disabled people feel like that. I think with this lockdown a lot of people will understand how people with different disabilities actually feel through their whole life. I think people might have restrictions that might be people who have always been able to do the things. Like there were a lot of restrictions for disabled people before the lockdown, so I think that people will possibly really understand how disabled people actually feel their whole life.

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