Transcript: Disability: what’s the learning from Covid-19?

Podcast Episode: Disability: what’s the learning from Covid-19?

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.

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Michael: On this podcast I discover the impact on how Covid has affected people within the disability and the social care community. So first up I spoke to Health Journalist, and she specialises in Social Care for many years, Pennie Taylor, and I spoke to her about Covid and what we’ve learned so far.

So, Pennie, we’ve been in this kind of pandemic for coming up to two years now, but can I take you back to the years before this pandemic. What was the kind of like issues for people with a disability, but also what was the issues that you were covering>

Pennie: Well I have been covering Health, as a journalist I’ve been specialising in Health for decades now. So I’ve got a perspective over about the last 30 odd years, okay … and it’s never been a good time for people with disabilities. Pre-Covid we were talking about really over-stretched services, about a crisis in social care that was having an impact on the NHS, people were raising issues around their human rights, we had postcode provision of services, you know, you could get some things in one area that you couldn’t get in another council area. And so those pressures have been there. What Covid has done is really put them in the spotlight and forced the rest of society really to look at the circumstances that people with disabilities experience and to try to think about how to sort them.

Michael: And I want to take you back now, because you said you’ve been covering Health issues for 30 years now. Have you seen small changes in that time, or is it still like the same?

Pennie: Well I mean I saw … I witnessed and I worked through enormous changes, like the shift from hospital based care to care in the community – that was a really significant move, so yes. Over those 30 years there have been distinct moves in the right direction. But speaking to individual people, to people living with disabilities, to carers of people with disabilities … the pressure that they can experience … the complications that are often put in people’s paths have been a pretty constant theme throughout.

Michael: So moving on then to speak about the present day, like Covid. Obviously, it’s kind of like shone a light on a lot of different issues, but as me and you know that, and people listening to this would know that these issues have been there for many years. It’s only because it’s Covid, it’s kind of like highlighted more.

Pennie: Yeah, absolutely. I mean we’ve had a really harsh light shone on issues around disability and the wider social care issues I think. You know, for instance, disabled people have really suffered disproportionately in terms of deaths from Covid, and infections and illnesses, and people have been isolating for years now in some cases – either unable to go out because of the risk that Covid poses to them, or frankly just too scared to go and take that risk. And clearly Covid has impacted there hugely. You know, we’ve had things related to human rights issues that I don’t think we’ve seen so starkly before. The imposition of ‘Do Not Resuscitate’ orders, for instance, allegedly without, you know, the permission of the person involved – to the withdrawal of care packages that sometimes haven’t been reinstated. You know, where are the rights of disabled people in all this? That’s a really, really live conversation right now I think, and so it should be.

Michael: You mentioned about the human rights – I just wanted to touch upon that, because you mentioned a lot of things there. You’re right about personal care has been cut for people with a disability or elderly people – and that’s a human right because people have a right to the same care as the likes of you and me, because it’s kind of taking away from them, and they’re hiding behind, in my words, they’re hiding behind Covid as an excuse … am I right when I’m saying that?

Pennie: Well I think there’s certainly a risk that that can happen, you know, we’re still, 2 years into this pandemic, got people really having to fight extremely hard to access services they might need, and sometimes just not getting them. But I mean we have seen in recent times, the setting up of the thinking behind a National Care Service. You know, we knew that that needed doing before Covid hit, but when Covid hit, it became absolutely obvious, it couldn’t be dodged. However it’s not happening as quickly as some people would like. They want to see action now, rather than waiting, you know, several more months, if not years, for reports to be published and plans to be put in place. You know, what do people do in the meantime? But it’s really down to all of us, the whole of Scottish society, to keep the pressure up on that, because I think that’s been one of the problems before – disabled people, carers, you know, huge numbers though they are, have been fighting this alone.

And I think one of the big changes is more people get the importance now – they see the impact and they don’t want it to keep going as it has been. And I think … something that’s really heartening to me that’s come out of Covid – yeah, it’s been very tough getting there – but it’s the visibility of disabled people … hearing the voices directly of disabled people communicating what it’s like for them. And Michael, I have to give you enormous credit for that as well – the film that you made for the BBC about Lennox Castle and the anniversary of its closure was some of the most powerful telly I’ve seen in a really long time, and I want to hear more from people directly affected. And I’m hoping that that won’t go away … and I have a feeling it won’t.

Michael: Well thanks for saying that Pennie, but the most important question – so if I said to you that Covid’s going to end tomorrow, but I don’t think it will – I think it will go on for a wee while yet. If you had like a magic wand, basically, what would you like to see in terms of social care or people with a disability, or even mental health issues as well, in terms of better services provided?

Pennie: Well we’ve got a challenge with the services that would have been provided before, because they’ve been really badly hit by the impact of Covid – by staff being off because they’ve been exposed to infection, as well as dealing with numbers of people needing treatment for Covid that has taken priority. So we have got a really big hill to climb to try and regain some ground. However, there are huge hopes for things like the thinking behind the National Care Service. If we get that right, people will notice a difference. I mean frankly we have to, and I think if Covid has shown us anything, it’s that we can’t just keep doing it the way it’s aye been done, because it wasn’t working. So we’ve got an opportunity here to do something new – we must not kick that into the long grass because it’s too difficult. This is the opportunity to do it. We have no choice – it has to happen, and we’ve all got to do what we can to keep up pressure, to make sure that it does. I’m not sure if I answered your question there, so if I dodged it, come back at me?

Michael: No, no, you did. You know, as you said, we’ve got a long way to go when we come out of Covid, and again we don’t want services to be cut.

Pennie: Well I mean I think another … another point that we mustn’t forget is that even if it’s not Covid, lots and lots of the experts I’m talking to are saying there will be other pandemics. Partly it’s driven by climate change around the world, greater movement of people, and animals out there that are spreading … has the potential to spread. And that’s something that, you know, doesn’t often get connected up with this conversation. We’ve got to really think about our environment as well as, you know, how do we rebuild services? We’ve got to keep that centre stage. But being prepared – we weren’t, in the United Kingdom … I don’t think we were as prepared for this pandemic as I think we should have been, and that will come out in the wash – there are various enquiries underway. We must not take our eye off this ball. This could happen any time again, let’s, when we rebuild services, build them with that in mind, and future-proof them.

Michael: Thanks to Pennie for her time. Next up, I spoke to an unpaid carer from East Renfrewshire and she cares for her daughter, Tracey Campbell, and I was asking Tracey how is Covid impacting on her daughter’s life.

Can you tell us a wee bit about the issues that you kind of like faced on a day to day basis? But I’m taking it back from before Covid?

Tracey: Okay, yeah so I’ve got 3 children, the eldest of whom is 18 now and she’s away to university, the middle one is 15 and she has Angelman Syndrome, and my son is 10. Most people with Angelman Syndrome can’t communicate using spoken words – they have sleep disturbances, high levels of anxiety and learning difficulties. That’s the official diagnosis of it.

Leah, herself, she … one of her main problems is her anxiety. She uses a communication app and a book called Pod which she can communicate on fairly well actually, but not to the same extent that someone would communicate if they were using words. But her anxiety can be difficult and she displays a lot of distressed behaviour, so she can really struggle to keep her emotions regulated and just herself, her sensory system can be all over the place as well. So just for her, being regulated is quite difficult, which can then result in distressed behaviour, which can be difficult for us to manage. Yeah, so actually just prior to Covid she was going through a really difficult time with anxiety, so actually we were probably in lockdown for a few months before everyone else, because she really couldn’t leave the house, and really struggling – up a lot at night and just, you know having real difficulties.

That was prior to Covid. Then when Covid hit, I think that just exacerbated all of that, so she was starting to get better – and in fact, we have gone out for one night out, just the week before it, and then I developed a continuous new cough the week before everyone else then had to go into … so we were in lockdown then a week early. So she was just getting better, and then I just feel that everything was exacerbated because she was already in a period where she was struggling to get out, and then of course she wasn’t able to go out.

And now, all this time later, we really struggle to get her out, and she leads a really sedentary lifestyle. In fact we’d just had a social worker round, because we’re looking to review that – and like one of the things he was talking about, so that was 2018, towards the end of 2018 – talking about how sociable she was and how much she liked going out. But it had been noted on the report that we had said that it had been increasingly difficult to get her out, and then yeah, that’s just been really exacerbated. So she’s really isolated now.

Michael: So we were in like lockdown, and nobody was going out, and everybody was talking … like I’m talking about like the government-speak as well on the TV and all that. And like they were telling people “don’t go out anywhere”, for basically your own kind of safety as well, you would say, because of Covid. How did you kind of like explain that to your daughter in like easy terms, would you say?

Tracey: But we very much take the view that actually people need to have information so that they can feel safe and secure and process that information. So we do give Leah the information that she needs – whether we write that in a social story or just a story that we write … so a social story is something very specific, following a specific set of criteria – so sometimes it wouldn’t be a social story, it would just be a story we’ve written. But we do ensure that we do talk to Leah about all of the … about everything that’s going on, and make sure that she understands. She’s not … she’s quite a good communicator – she’s not great at asking questions on things she doesn’t understand – probably because we’re not great at modelling to her on her communication aid how to ask those question And I think previously I would have tried to shelter her from that, and I think that is kind of the global advice out there, is “oh, you know, don’t tell them, because she’ll not worry”.

But of course you worry something about … you know, if something’s hidden away from you, of course you worry about that more. So like Leah did actually get access to school, but of course it was really different – so one of the ways in which people with disabilities again were disadvantaged. So she got to school because she met a set of criteria – but if any of those children had been at a mainstream school, they would all have met the criteria for going to school. So of course school looked really different – and that’s not the school’s fault – the school couldn’t staff that. But I feel like from a council point of view there should have maybe been more consideration for that to help support the school, to bring more people into the school, to try and have that experience, being as close to a normal and good experience as it could be. Because actually it ended up … it didn’t feel like school. So that was another different experience for her again, which it did help her, don’t get me wrong, and it was good that she was there, but I feel like with a bit more thought and consideration for actually the fact that everyone in that school would have been classed vulnerable. Had they been based at a mainstream school, I just don’t think that that was on anyone’s radar at all. And I don’t mean from the school – I mean from the council or the government to put the funds in. you know the school couldn’t manage that without extra support from externally. So, yeah, so I think that was a big disadvantage.

Michael: I wanted to ask you finally about when we eventually like come out of this pandemic, whenever it will be – and I know that me and you spoke in the past about the caring responsibilities of a parent or a family member or a family friend. But what would you, from a carer’s point of view, what would you like to see done better for kind of like unpaid carers and also as a kind of Mum, a family member …but also, you know, just people with a disability in general that gets cared for?

Tracey: Do you know, see when we first went into the pandemic and there was all that kind of “we’re all in this together”, kind of rosy glow … and I hoped … I dared to dream for a minute or two that actually people would realise what life was like if you were stuck in your house and you weren’t able to go out, and you had all of your options for what you can do in life reduced. And I thought that it would help people understand that that is actually the life that many people with disabilities, and for other reasons, can live. And then, I don’t know, just as soon as the first kind of easing of restrictions, and then it all ended up really judgemental and people were being horrible to one another, and I felt like some people even more self-centred, like oh well … as if “well I’ve had to put up with that for a few weeks, so now I don’t have to do anything”.

So it was, I think it was a bit of a disappointment from society. But I do think that overall we need to … really for there to be big change, I think we have to appreciate that disabled people are people, and that they have worth and value, the same as everyone else does, and just cut all the red tape, and there’s so much. So because of the pandemic and different things – we have been trying to contact social work since August to say that we were in a bit of a crisis situation, and we didn’t have a social worker and it took 2 months. And we now do have a social worker, but we’re still going through that process. And it’s nothing against the social worker – he’s lovely – but it’s the process of everything is so dragged out. And I feel like I often have to come up with the ideas and you know, try and think about all those things.

But all of that is exhausting for a parent to have to do that, as well as all your caring responsibilities, and try and think creatively out of the box. Because, at the end of the day, what I think society thinks my daughter should do is go to a school, be happy, not really learn very much, then go to a college course, learn how to … I don’t know, wash her face and make a bed – and then go and do felting or basket weaving or something for the rest of the days. And I think that that’s what people think she deserves … Oh poor Leah, it’s okay, we’ll look after you. But actually she is a person who has lots of values and skills that could be used to contribute to society, and that is the change that needs to happen for things to be better for Leah, and therefore for families and for carers and for everyone, you know, it’s big change that needs to happen. And I’m not saying it’s going to be easy – I don’t know whether … I don’t think the Shared Care Service Bill … I mean maybe it will go some way towards that if you get better paid … you know, all the stuff about the PA’s and things like that. I mean trying to attract people into this, you know, that type of work – and see the value in it. Actually, you know, if you can actually help somebody go and do something meaningful for society, that’s a fantastic job, and of course you should be well-rewarded for that, as should that person as well. You know, it needs a big value shift, for me. But until we stop feeding and perpetuating the myth that disabled people are poor and vulnerable, and all they can do is take, take, take, I don’t think we’re changing that.

Michael: Do you think like Covid, from a carer’s point of view, and also a parent – has kind of like shone a light on these issues. But would it be fair for me to say that these issues have been there for about 20 years, 30 years, or even longer, before this pandemic?

Tracey: Yeah, I mean a lot of those issues stem back from when Winston Churchill and his pals decided that they would lock up everyone with disabilities to try and ethnically cleanse them, so that we didn’t have disabilities. And I think a lot of the … because previously in society, you know much further back actually, disabled people were just accepted as part of the community, and were just part of the community – able to give what they could give and just very much an accepted member. So actually it was all of that and then everything that perpetuates from that. And that’s obviously a long time ago that that was all happening. I mean you’re 100 years of history there.

But then it did change, at that time, to become acceptable to lock people up because they were poor, because they were an unmarried mother, because they had a disability, because they had an addiction or mental health or whatever. That became acceptable in society to do that, so that was a big shift from what had been before. So maybe we can have a big shift back to actually appreciating what’s better about life. But there’s nothing new, to me, from the pandemic. I mean we have struggled a lot, and my husband has really struggled quite badly with his mental health, and that is because of the pandemic. But if we’d had the support in place before the pandemic, would the pandemic have been so bad? I don’t think so. If we lived in a different society, would the pandemic have been so bad for us? Probably not. It needs to change. But it changed dramatically before, and maybe we need that dramatic change to come back the other way and just accept people for being people and recognise that.

Michael: Lastly on this podcast, I spoke to Sanjeev Mann. Sanjeev is a freelance journalist and he is a disability campaigner – and I was asking him on his views on Covid and what he would like to see when we come out of Covid.

So Sanjeev, can you tell us a wee bit about your disability?

Sanjeev: Yes, so my name is Sanjeev – I’m 25 and my disability is Duchenne Muscular Dystrophy. So basically a lot of people probably know that it like a muscle weakening condition where like your muscles kind of weaken over time. And it means I use an electric wheelchair, I kind of have limited movement generally. So yeah, that’s kind of a roundup of that.

Michael: So now that we’re in Covid kind of times, like the pandemic – did disability kind of like affected you before Covid?

Sanjeev: Well yeah, like I need kind of support, like care sort of thing, but most of the time … well all the time really – whether that be family, friends, or like my P.A. caring, that sort of thing. So I kind of need support, and as I said, I use an electric wheelchair, so that’s kind of how it affected me.

Michael: And so now that we’re in like the second year coming up for Covid, how has like Covid been impacting on your life in terms of, you know, have you still got your Personal Assistants, or has that been stopped?

Sanjeev: At the beginning, when Covid kind of came about, then it got stopped, but that was like from my end, just to kind of limit. But I was lucky enough that like my Dad … like my Dad was off work, so we were kind of lucky that I was living at home and I did have somebody to sort of still look after me, and we could sort of limit the risk, I suppose.

Michael: And I know as well, Sanjeev, that you have been … you have been shielding because of the pandemic.

Sanjeev: Yeah.

Michael: So can you give us a wee overview about what was that like for you? Like not kind of like seeing people. Like I know that when people started to go back out again, you were still shielding as well. So did that kind of impact on your kind of mental health in a way or …

Sanjeev: Yeah, no it did – it affected my mental health quite a lot, just because I’m generally quite a sociable person, and I go out quite a lot and I meet up with my friends. So like, if anything, that was the sort of … for me, that was like the worst part of Covid – was the fact that obviously I was shielding, but then I couldn’t really do anything, like I couldn’t go out. Yeah, that was the most difficult part of it – especially when the restrictions were lifted for everyone else, but except shielders. So that was really tough.

Michael: And also I wanted to ask as well, obviously like me and you spoke before about this, but like Covid has kind of like shone a light on different issues, but you and me know, us both, that these kind of issues have been there for years. You know, it wasn’t until like Covid came along then, that the media attention is full on in terms of, you know, if people’s social care being cut and all that. But these issues have been there for years.

Sanjeev: Yeah.

Michael: When we come out of Covid, hopefully one day – as a disabled person, Sanjeev, what would you like to see change or improve for the lives of people with a disability?

Sanjeev: Well firstly I think like working from home should kind of stay in place, especially for many disabled people, it really has like helped – I just mean thinking about more accessible for a lot of kind of workplaces. So I think that should sort of stay in place for people … because obviously we know now that it is, and it probably was always possible to be doing a lot more working from home.

Michael: When you said that, Sanjeev, I was looking at an interview the other week and they were saying that … I think it was like 95% of people with a disability said that they would prefer to work from home because when you’re at home you know your own home and also you’ve got things like an accessible toilet and …

Sanjeev: Yeah, exactly, yeah.

Michael: … whereas when you go out to a venue, you know yourself, the toilets and the building in itself is not very accessible. So would you say that’s one other thing that you would like to see as well? More people in work, but also giving people a kind of choice in terms of working from home?

Sanjeev: Yeah, no I think for like workplaces, where it is possible, it should definitely be like an option – especially for those that obviously are still sort of worried about Covid and weren’t going outside, because obviously I’m (… unclear) that as well. So yeah, I think that’s important. And also, yeah access, because still there are so many buildings that don’t have access, and also buildings that the majority of them don’t have like proper equipment for toileting, like hoists and all that sort of thing. So yeah, hopefully … hopefully Covid has sort of shone a light on that, and it’s just sort of frustrating that it needed Covid to happen to make, say online working possible, when it was always possible. But yeah, at least it’s kind of happening, and it has like paved the way a little bit. Similar to the article I wrote for The Scotsman last year where it was like 6 ways the pandemic has actually helped disabled people. So I suppose there has been a little bit of good that has come from the situation – it’s not all kind of been doom and gloom I suppose, and it’s just important to kind of stay positive I suppose.

Michael: Okay, thanks Sanjeev.

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