Anna's story

on. Hi, Anna. Would you introduce yourself and tell me a little bit about yourself? Yeah. Hi

Is Isaac I'm an I'm Oh, who am I? Um, Lots of things. I guess I'm a disabled person. I live in Leicester

I'm tired. My phone is tired. No, um, I suppose I'm I'm I I wear different hats on different days

Um, one of the things I do is, um, I'm one of the conveners of a thing called social care Future. Sort of trying to improve things, I guess, for people that draw on social care. But I also generally sort of con gently challenge and, um, sometimes more forcefully challenged, like health social care

I just trying to use my lived experience, I guess, as a disabled person and as somebody with, like, multiple long term conditions to try and force the system to kind of work with people, I guess. And yeah, and I'm also an tea addict, as was previously connected. So lots in there

Um, can I ask you what your passions are like? What makes you dick? Like, what's the thing? That this is an interesting question. And this is where perhaps, um, yeah, because I I've I've done a lot of thinking of this in the last few years, but I I think I think one of the things that I'm I like people, I think so. I I really enjoy spending time with people finding out about people and just generally kind of spending

Yeah, but I think also one of my biggest drivers at the minute is one of my things is sort of injustice. I think has always kind of got me in different ways. And I think and I mean, there's so much at the moment

You almost have to switch off to some of it because you I can't fight every battle and like it's overwhelming sometimes, like on the news and on the Yeah. I mean, it's just so many things that you could want to fight for or try and help, and you sort of feel quite powerless at times, like, sort of you've got refugees in one hand and you've got cost of living and you've got like, just so many injustices it feels like, But I suppose I've tried to channel some of that into a small bit that I think hopefully I can try and change, Um, and maybe make some little difference somewhere. Um, and I guess that's a passion, because I think that's always been there, even since I was a kid on different things, like sense of like, trying to and it's exhausting

But I think if I didn't do it, I'd just feel a bit like What's the point? Like, what am I here for? Sort of. And, yeah, so I don't know. That's not really probably what you meant

You probably meant like music. And I don't know, but I do like photography. I do, um, enjoy taking photos and being creative in certain ways

Um, I don't know if that's a passion or more. Just a thing that I enjoy, you know, doing sometimes. Yeah

Thanks, Anna. So a lot in what you've already said. So this, um, space that we've got together, I really wanted to explore with you

And this might be your direct experience. It might be the experience that you have in terms of being someone involved in social justice issues for disabled people. So what impact did COVID-19 the COVID-19 pandemic and lockdowns have on your life as a disabled person? Yeah, it's a very interesting one for me because it was quite in one way

I thought I was very lucky, actually, you know, I didn't have any of these huge. I didn't have any, Um, very close, uh, fam like losses. Um, and I myself didn't get really ill

So in one way, I feel like I came through it quite unscathed compared to many other people. Um, and it's kind of a strange I mean, now it almost feels like it was a dream, doesn't it like it? Kind of like it was some sort of film that happened or something. Um, I think very early on it didn't feel real

And almost initially, there was a slight, um, relief for me in the sense of, like not having to go and travel and do it like my body was like, Oh, OK. I can just sort of stay in and not feel bad about staying in, like, perhaps for a few weeks. That was, like, actually a relief, which sounds weird, but I think, actually, probably was a bit and then just the sense of like, wanting to do the right thing, and I I don't know

Then there was obviously stuff around, like shielding and things. And I feel like the first few weeks everybody had to stay in and everybody pretty much was, unless they, you know, did certain jobs. Or they could do their one hour of exercise, um, which I wasn't doing because of shielding

But like I felt very much, I felt a bit more like part of society because everything went online. Suddenly there was like comedy shows online. You could watch a ballet online and and everybody suddenly was having this experience where they felt like a lot of their stuff

Their normal choices were taken away and they had to kind of adapt their life and and they didn't have as much freedom as normal. And I felt a bit like suddenly we were all experiencing the same thing because I think that's how I often feel. You know, I don't like, you know, evenings and weekends and stuff like that

I've very rarely actually managed to do stuff at those times, partly because I don't have the energy and partly because I don't have enough support at the right times and people that want to work those times and and I certainly don't have spontaneity. And and I I felt a bit like OK, Yeah, like we're all experiencing it together. And that actually felt quite nice for me in a slightly warped way

I know that sounds. I mean, obviously, don't get me wrong. The pandemic was horrible

And watching the images and stuff that was coming out of other countries like Italy and stuff was horrible and just sort of knowing what was coming and the the the things in care, homes and stuff. It was horrible to to watch, but that almost didn't feel real either. That sort of felt a bit detached as well

It was It was a really strange time. And yeah, it's sort of a weird memory now, but initially for me, I think I just almost sort of went OK. I can do I I can do this

I know how to do this. It didn't seem, I suppose such a shock to me to be in, because I've I've had to spend, you know, chunks of time in before for various, like, health reasons, or I sort of knew how to do it. And yeah, what was the Oh, the the whole thing

And then, yeah, Then there was shielding. So then that was harder when, like, the lockdown started to lift and everybody started to just go back to like, their lives. But we were still stuck indoors

Uh, shielding. That was harder, because it it felt like we were forgotten again and just sort of, like, not a priority. Definitely

Um, it was like the priority was to get other people's lives back to normal and just, like, let the look up the ones who are, like, more vulnerable. And then other times, I think it just felt like society got more divided again. It's like people take sides on everything now

So there were people that were pro mask or anti mask or pro vaccine Anti vaccine. Oh, yeah, All of that stuff's a bit. Yeah

Sorry. That's a lot of often. No, I just I So I wanted to go back to a few points

So you said that, um, you you felt quite it. It wasn't as different for some of your experiences because of the lack of support you get I've had and living with long term health conditions. Sometimes you so I'm just wondering like, do you? Did you did you worry about kind of getting covid and getting the help, Um, that you might need, I don't know

So I had at that point in time, I'd had one p a that had left had just left, I think just before covid. So I only had one p a and and I made the decision. Obviously she'd keep coming and like she who was being really careful the rest of the time, like so And I I was very careful

I did stay in pretty much. I think I went out like, three times in a and they they were for hospital appointments. So otherwise I did just, you know, I did properly shield

So in that sense, I was careful. But I think I don't know, I I I always have a slight sense. And maybe this is because, you know, on average, probably once a year, I end up in hospital, and I and usually it in theory, it's something that is could kill me mostly

But but never doubt. And I suppose I I'm not I'm not I don't live my life terrified of I sort of think something will get me at some point. And if it had been covid, I think I was more worried about, like, long covid as well, like actually thinking

Yeah, OK, you could end up really ill and have to go into hospital and stuff, which would not be nice, but the long covid thing seems like almost to have been ignored. But actually, I thought I'm already, you know, struggling in life that adding more of that on top would have been really quite a challenge. So, yeah, I definitely didn't want to get it

And I was careful, and I did everything I could to avoid it. But I wasn't, like, really anxious in the sense I I suppose I'm not usually a kind of anxious person in the sense of like, I tried to kind of look at the start to look at the data, to look at that and then modify the risk as much as I can, and then kind of just live my life rather than like, I wasn't sat at home like, really anxious about it, If that makes sense, I just tried to Yeah, avoiding as best I could. So you talked about she so like I was just wondering, how did you make sense of knowing what you were gonna do? Like how Did like what did Yeah, Yeah, I mean, initially, initially, I wasn't on the early shielding lists officially because I didn't I can't even remember now, like how, what qualified and what didn't qualify

But at some point, I just basically made a decision fairly early on that because of all my different things that are wrong with me, like this would not be a good um, like I'm I was a lot less likely to do well. And then as time went by and more data started to come out, that kind of seemed to back up. And then at one point, I spoke to one of my consultants on the phone and he was just like, Yeah, don't don't go out

Just like And then quite late, I actually, Then the government changed the guidelines, and I officially kind of got started getting the shielding letters, and I was properly and it was almost a bit past that. So it meant I didn't get any of the official support early on when they were doing the like food deliveries and stuff. I didn't get any of that because, or like you could get priority slots at the supermarket, stuff like that

I I wasn't official then, so I never got any of that stuff. Um, and by the time they did suddenly go Yeah, actually, statistically you should you would You should shield. It was like, near the end

It wasn't near the end, but it wasn't as so Yeah, It was a bit of a mess, I think. And I think that then made it very hard for people to trust when they then stop shielding to trust the government. That or to trust, that those decisions were being made, it was very hard to sort of understand the risk

And obviously, things moved on. We got the vaccines and stuff like that, and so the the landscape changed. But I think because it just felt early on, so confused it

It didn't make it easy to think. Oh, they know what they're doing. So yeah

So yeah. Yeah. So you live in a place that has a really complicated um, So there's a lot of kind of different rules compared to other places that Yeah, we did Yeah, I've forgotten that

Yes, we did. We had a massively extended lockdown, and we were like, the only city that never came out that first year of lockdown, even in the summer. Nice

Yeah. Sorry. Yeah, I ask you a question

Sorry. Yeah, I forgot my question. Like you talked about the lack of trust

Do you Do you feel that? Was that a thing that existed before or that became more prominent, like trust Seem to kind of really feature heavily in your answer there. Um, I think I so I obviously like. So I, um, trained as a then qualified as a doctor, right? So I've worked as a medical person, profession or whatever

Um, and I therefore I think have quite a high level of trust in kind of medical science, generally of sort of evidence based stuff when I can see the evidence and I can see the the understanding and I can see the, you know, and I suppose, an understanding of how, um things like diseases and viruses, work and stuff, which I think helped me a lot. And I think I did trust, like, I suppose I didn't trust the politicians much I think it's fair to say I think I trust the experts more the the kind of the people that were stood up there Is it Chris Whitty and um van And you know, I think I think perhaps at times I I did definitely struggle with the politicians. And then when stuff came out about, like Party Gate and driving to Barnard Castle and all that sort of stuff, it just felt like there were different rules for different people, and we weren't all in this together, and we weren't all really experiencing the same things

But I think what I saw around me was that trust has eroded much more than I realised. So like, um, I saw a lot of people that were very anxious and didn't I think it became very hard for people to know who to believe, what to believe. Obviously, some of the stuff you know, there's very few certainties in anything in life and medicine is no different

But that's quite a comp, a complex thing to get our heads around, and I think it always is it, um like personal risk, you know, with any kind of treatment is really difficult to really quantify and to really like, understand. And I think what I saw was a real sense that certainly amongst like the disabled community, there was a real breakdown. I think of trust and then in the kind of powers that be kind of but also like in wider society, that then there was this kind of like everybody suddenly became an expert in like viruses and had an opinion, and it it became a real messy world of like, I don't know, I feel like 50 years ago if the government had said, like, go and get vaccinated, most people would have been like, Yeah, the doctors are and they're saying, Get the vaccine And now there's There's like, so much, so many different opinions and different voices and different like social media and it gets really repeated

And I think it's harder for people to know what is the real reality and what is like or what would be the best thing to do, especially when it's not a black and white. It's not a like it's a kind of personal risk and and, you know, and uh, it's hard, it's really hard. Do you think there were particular experiences and particular decisions that were made

Um, that didn't, like, say, just, you know, you're a disabled person. You, um, advocate and are really strong on kind of the voice of like, uh, disability. And so were the things that were happening that shocked you related to disability or didn't shock you

Other things. Yeah. I mean, I think it's coming back to me now, so I've not thought about this for a while, like so Obviously, very early on, there was a decision made to sort of empty hospitals into care homes

So it and then that meant that a lot of care homes caught covid. It was the very early days when covid was still, you know, fatal. For it was the the bad version of Covid and obviously no vaccines

And so that felt like, um, almost, you know, those those people living in those homes had hadn't been valued and enough and kept safe. They hadn't been protected. And obviously, some of that is, you know, hindsight

Because I'm sure the people who sent them out of hospital didn't think. Oh, you can go. And you know we don't care if you die and I'm sure that wasn't the thinking

But it clearly wasn't the thinking of like, we need to protect the people in these homes. And I think then there was all the stuff around. Um, do not resuscitate orders, kind of being placed on a lot of disabled people or people who it felt like, um, it felt scary for a lot of people because we could hear we heard of examples

Or, um, some of the guidance early on seemed to suggest that, you know, if somebody has lots of things wrong with them or, um, the actually less effort, you know, there wouldn't be put on ventilators and stuff like that, which seemed to suggest that they would sort of if they had to. They would make choices based on things like disability and sort of save the wealth. The healthier person, which is just, like, seems very well, just wrong on so many levels, but very scary

And you think, Oh, you can sort of start to see how society could sort of just sort of shift. And then there was also early on this thing, the care act easements that, um, were I think were passed into law or were like were created, but most areas didn't use them. In the end, um, which basically said that like social care could do away with most of the like nice to house and just go into sort of providing very basic support, which on one level, I sort of understand the sense of, like, you know, if you're in a short term crisis, there's actually some of the the you know, you sort of just have to do your best at the time

But I think it was very telling that it was only that bit of law, really, and that sort of service that got affected and and it was like, Well, why are you deciding not to prioritise social care over all these other things that you could, you know? Why not actually bring things in to support social care rather than just decide? Oh, well, we can do away with all of your rights and your safety net, in a sense, because it then felt like the little bit of protection that we had because things were in that law that said we had to have X and Y was just being taken away And what rights did we have and anything could be done to us? So I think all of that meant that it just felt very as disabled people. I think we felt a bit attacked or not valued and not protected, Um, in those early days and that it felt like our rights were fair game compared to other people's rights that were perhaps being protected and being heard more. Yeah, why do you think that was? This is where my diplomacy might need to come in

Um, I yeah, I there's loads of reasons. I think it's partly I think, um, I don't want to say that. I think you know, most of society thinks we're disposable and don't care if we live or die

I don't I don't think that is. It's as harsh as that. I like to think it's not anyway I hope not

But I do think perhaps on some level we are not see well, we're certainly not seen as sort of equally important part parts of society. I would say or valued as much in a in a way or seen as real people. I think again it's a bit like with with um, refugees or migrants or whatever these words are used, that sort of dehumanise And people have these ideas of what we are, um and, you know, burdens or vulnerable or people that aren't really doing anything with their lives

And so what would it really matter if you know? And there is an undercurrent of some of that. Plus, I think as a group, we're a bit easier targets because we don't get heard much on the media, and we don't have really strong voices that are, you know, so perhaps we are less. It's less of a political risk to to not value us as much

Or we're not seeing that, you know, perhaps people don't get as angry about and and everybody was having challenging things, you know, like Children's schooling. You know, they they missed out on loads of school. So So it's not like we were the only group going through challenging things

But I think I think there's definitely not always a Yeah, I don't I don't think, um, we are necessarily seen as an important part of society as much as we should be and as as equally as we should be, Yeah, That's really profound. Um, and so there's lots of talk about a post pandemic world. What does this feeling look like to to you as a disabled person? Um, yeah, it's a weird one, cos I don't really know like your mum might think

Oh, we I don't think we are in a post pandemic. Well, because the pandemic is still here. It's just that we seem to have I say we in the loosest possible set like the public narrative, the politicians, the media seem to have all decided it's over, um, in a way

And we're just kind of Whereas I think it's not over, I think we've just got to getting to learn to live with it in the sense of it's still here. And we've got to obviously, you know, have boosters and still make decisions about what we feel safe doing. So, like, I'm pretty much, you know, I'm going out and about and all of that now, And I think it has kind of felt a bit like some people didn't feel ready and safe to kind of re enter into the world, but they kind of got a bit dismissed as like, well, It's fine now, and I think there was enough support for those people to like an understanding, actually that for some individuals it was still, it still felt very risky and they didn't you know, they weren't ready and it was like there was suddenly a switch was flipped and it was like, Right, that's all not ha

That's all in the past and we've moved on now and to this new normal over that and apart from the fact that we still do loads of stuff on Zoom, it does kind of feel like most things have have gone back to normal. But they weren't a great normal anyway, So it's like and and actually they haven't gone back to normal because, like health care is really stretched. So we're all facing like, longer waits for things and still struggling to see, you know, to get the health care that we would have got before

Plus, there's then more people that need health care than before, and that's kind of not really getting addressed. And then social care is even more struggling than it was before the pandemic, and that's not really being addressed, and I feel like we haven't used it as an opportunity to come out and say, like, What do we want our society to look like? How do we want it to be? How can we build a more fair, equitable society that values everyone and take some of the good bits from the early days of the pandemic where they were like, you know, the WhatsApp groups and the mutual aid and the I think people have almost went back to their like, selfish consumerism. And when we've been through this horrible time, when actually most of those people, realistically, you know, a lot there were a few people that went through an awful thing, you know, if you had a big loss, like don't get that

But the majority of people I know didn't have that themselves. They maybe were Flo for a bit. And then, you know, they had they missed a holiday or two, you know, it wasn't their lives didn't drastically change

But then suddenly they got all these freedoms back and they were like, right, we're gonna have the best summer ever and the best Christmas ever, And we're just gonna almost go more towards the kind of like self-interest consumerism line. And I think that's a shame, because I actually think it would have been a good time to maybe have had some more genuine discussions about. Well, what kind of society do we want to live in? And how can we rebuild in a way that brings everyone together rather than yeah, the same people who always had the kind of better lives and easier lives? Just have it more and the other people are left behind

Yeah. Gosh, I'm in a really pessimistic mood today. You mentioned furlough

So were the things that surprised you like. So I'm thinking about some of the things that helped people in society and the way that we organise certain things or were organised. Were were there any things that really surprised you, or were there things that didn't surprise you? Particularly, like maybe the approach differed for people with disabilities and income than people that were employed or Yeah, I'm trying to think, um I mean, there was there were some simple things like I was on

I'm still on a legacy benefit. So universal credit at one point, I think got increased by £20 a week. I think that was due to covid lost track

Everything got a bit blurred and But they didn't do that for legacy benefits. I believe so. There were, like, little discrepancies there of like and most people on those benefits disabled

But I think I suppose it did show that actually, you can do anything you want as a government. If you if you have the political will like you can step in and help people and you can spend a lot of money. And when it affects everybody in society, they are prepared to do that with the kind of furlough schemes

I think it was frustrating that there didn't seem to be You know, me as a person on certain benefits. I don't get a huge amount of money and the amount of scrutiny that I, you know, I'm under to check. I'm not like lying about how much savings I have, or like with my direct payments that I don't, you know, use the money for anything other than social care is really, really high

And yet it did seem like money was just being handed out to the contracts and stuff with no scrutiny, and I get that certainly very early on, it had to be done very quickly, and they needed to do a kind of broad brush approach. But even as time went on, they should have been able to bring in some of those checks and balances and then go back afterwards and where things were done badly, hold people to account, and that's not happened at all. And yet just for us to get these tiny payments that you know, we really need to, like, be able to live our lives with, you know, treated like we're always trying to to, um, steal from the system when we're not

And that feels very unbalanced. And I suppose now it's being used as a reason why they can't invest in public services more and they can't put more money into things because of covid and obviously the war in Ukraine and stuff. But actually it's a bit of an excuse

I think as well, because they could if they wanted. They just have to get the money from somewhere else, and that's a political choice, isn't it? And and that's a bit too political. But yeah, a really important part of your experience

So I was wondering, like, what have we learned from COVID-19? Um, and lockdown. So if we learned anything, what have we learned? So I I wish we had Leinster. I feel like I feel like the people that were already kind of community minded and so like, so care about other people and look out for other people

Sort of people became more like that during Covid and are still like that now. And I feel like the other half of society that are kind of just getting on with their lives and don't want anything that's going to They're only interested if it impacts them sort of people. It kind of push them further that way

And so it feels more divided somehow against society. In a sense, a bit more kind of, I don't know, I I you know, I I watched it and I, you know, I look at I don't know people like in Ukraine now and or like us during the Second World War, and and I think that's a very rose tinted view we often have in the past. But there was more a sense of of the greater sacrifice for the for the the greater CO

I don't know what I'm trying to say for like everyone the the greater good, I think. And what Covid showed me was that there are still people that think that way. But there are a lot of people that don't think that way now and really would not do well in a crisis or in a, you know, in a in a sort of difficult situation and that people have got so comfortable in their quite they wouldn't see them as privileged lives

But actually they are quite a lot of them. You know, the comfortable lives with their freedoms and with their, you know, their luxuries and and and sort of see those as see those almost as rights. Now, um and you know, when things are taken away like they can't go on holiday or or they couldn't go out for dinner

But these are somehow a loss, and there was a good reason why we couldn't do those things. It wasn't like somebody just did it for fun and that protecting the vulnerable to covid not just the vulnerable but the the people that were more vulnerable to covid wasn't a reason enough for those people to say yes. Actually, we should all stay in a bit more

We should wear a mask for the greater good of all those people, including themselves and their families. That's a shame, I think. Yeah

Really? Um, a shame. So you you touched on this idea of vulnerable? So, like you, we often hear valuable and vulnerable. Um, and you started to articulate that

So the language, like shielding vulnerable, like did that affect you? Like what? What's your thinking about that? Yeah, I don't know. Actually, um I mean, I I don't like the word vulnerable just because it gets used to, like, lump people into a category of the vulnerable. And nobody is inherently vulnerable or not vulnerable

Like it's situation specific. It's I mean, it's just and you can be vulnerable in one situation, but not in another. And we'll all be vulnerable in some to some things and lots of others

You can be more vulnerable to something, and you could be, you know, Yeah, definitely. If I caught covid, it would have been worse for me as someone with lots of conditions than somebody else my age who had no conditions I was more vulnerable to covid in that sense. Um, but yeah, the language, I think around sort of the vulnerable

It's just not It's not even correct, factually. But it also depersonalises those people as, um and yeah, it was a weird, like label and shielding. I suppose it sounds like it's nice and sort of We're doing this for your own good and protecting you, but, hm, I feel like later on in the shielding process, it was more so that finances and economy econ economy

I can't say that word was probably prioritised over, like the shields in that sense. So kind of getting the world back working and yeah, yeah, getting the normal back for for the majority. And they kind of forgot about the minority

That was still Yeah, so So you were saying before we have you had the power cut around? Um, a lot of emphasis on getting people back to work. And then there was a group of, like, you know, disabled people that were still shielding and hm, Yeah, kind of left behind a bit. Yeah, I guess I like, I suppose this country we always prioritise like, um, value

I think we value the wrong things sometimes, and and I get it like we do need people to be able to work. And we do need an economy that you know is. But I think things like well-being and health and, like psychological well being and quality of life for everyone is not always valued in the same way

Mhm. Yeah, so I wanted, because that is really profound. I wanted to ask you, like what would you like the Covid inquiry to hear about the people's people's sickness of covid? Like what messages would you like to tell them? I think I would

Well, I'd really like them to really look into why there were differences. So, like the number of people with learning disabilities that died was higher, people with physical disabilities was higher. People from certain, um, ethnic groups was higher

And some of that might be for, like, medical reasons, like but I think have been actually the response that it didn't take those peop those groups needs into account properly. And I I want the inquiry to really look at that and try and work out why and who might be responsible for that and and try and learn for the future. Those groups of then protected in the happens then we don't have that inequality of like, um, certain groups

And I think I'd like there to be a maybe, just that it can stop out like society and that actually, what we want our society to be like And And I'm sorry to stop you. Your Internet has really gone. I thought my video might be a It's probably because it's all like resetting

Is that any better? The Hear? Can you hear me any better? Yeah, sure, sure. So can I ask that question again? What? The inquiry to hear about the experiences of deaf and disabled people. OK, Yeah, I'd like them to hear that

Well, I'd like them to interrogate the data That suggests that certain groups of people were more likely to die of covid and like, people with learning disabilities, people of certain ethnicities. And I'd like them to look into why, and some of that might be medical reasons. But some of that also may well be that the response didn't right way

And I suppose I want lessons to be learned from that. So that in the future if a war or whatever something happens that actually like there are already plans in place for how themselves each time. And then I also would like them to hear that

Or I'd like it to be an opportunity for a conversation about, like, a rethink of our sort of values of society. Like, who do we value and what type of society do we want to be? And how can we try and build that now and protect that in, like, law and stuff? So that so, Yeah, equality is more protected, I suppose, Because I think, Yeah, I'm totally losing you, Anna, unfortunately, um mm. Let me stop, though

But can you say that you have to put yourself on mute? Yeah. Hang on. What I'm doing? If you put your computer on, mute the computer and then call me

Is your computer mute? Oh, um, so I can hear an echo. Yeah. So, uh, I I'll ask that question again

Um, so your computers, That's right. Now. Oh, no

Let's, uh, unmute yourself. Yeah, I'm on it now, so that seems to have solved that problem now. It's so funny

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