Shana's story

cool. Can I get you to introduce yourself and tell me a little bit about yourself? Yes. Sorry. One moment

I'm just gonna remove the message that's come up. OK, so to introduce myself, I'm Shana. Um I'm 43 I live in Brighton

Um, I've got multiple sclerosis, and I'm a full time wheelchair user. Brilliant. Thanks for sharing that

So, like, what makes what makes you tick? What you enjoy doing, What's the things that really make you? You. Well, um, what I really love doing is gardening. Um, so I spend a lot of time, Um, I've made I haven't actually got a garden where I live

So I have created created spaces in the car park, um, and sort of taken over areas and made lots of accessible gardening plots around the car park. So I love that. And I love football

I'm a Brighton Hove Albion supporter, uh, and season ticket holder. So, uh, I love football, and I go to a choir every week as well. So Yeah, Sounds like you're super busy football singing and flowers

So, um, thank you for agreeing to take part in this project. So this project is exploring the impact of COVID-19 on the lives of deaf disabled people and their loved ones. So if you're happy to, would you share with me? What impact did COVID-19 or the pandemic have on your life? Oh, goodness

It impacted. I think life in so many different ways. Um, I mean, to start with, I have personal assistant, uh, carers who come in every morning and help me get up and dressed and ready

And especially at the start of the pandemic when we didn't have p PE and didn't know anything about about the the virus or how it worked. Just too scared to have them come in for anything more than was absolutely necessary. So I mean, I had to have them come in for some stuff, but they would wait in the hallway

I would do as much as I could of, you know, trying to, um, do my hair or, uh, get dressed, and then they'd come running up and do up my bra or something and then run back down the hallway and it was just mad. Um, and it really was the bare minimum that I needed. Um and, oh, gosh, Stuff like they cut up my food for me

Um, so I ate a lot of, um, fruit and vegetables, and they would, you know, leave in the fridge like lunch and dinner and chop up carrots. And, uh, you know, all the fresh food that I struggle with and, of course, over the pandemic A It was really hard to get fresh food. Um, and the stuff you did get if you got it didn't last very long

Um, and I didn't really want them touching and breathing over food I was eating. So my diet massively changed to whatever we could get and things that I could just grab and eat. Like crisps

Um, or biscuits from carrots and apples. Um, yeah. So that had a huge impact

Um, on my weight and my mobility, everything. Can I ask you, like, how did you like? So it seems that you kind of decided this is how you're gonna organise your life as a result of not knowing. How did you make sense of like what you needed to do or yeah or did

Yeah. To be honest, I kind of, um kind of worked out what was essential for being alive and what wasn't essential and went from there. Um, So what was essential was that I had food that I could eat, That I was clean enough

Um, not compared to what I usually like, but enough. Um, it kind of went from there. So, you know, on most days, having a bra on actually wasn't that necessary

Uh, being in slobby pyjamas or a t-shirt and pants was fine because I wasn't going out. I was shielding. I wasn't seeing anyone, so yeah, I kind of really went with what was the basic essentials of what I needed

You mentioned the s word shielding. So, like, how did like, tell me about how you became to shield You found out about it? What that meant to you? Like, how did you even what? What did it look like for you? Wow. Um, I was already shielding for a few days before it became a thing, and, um, people suddenly stopped going

Oh, don't you think you might be overreacting to going? Oh, this is a thing. It's called shielding. Um, and so I was already doing it because I had been at the very end of February in 2020

I had been at a meeting in Brussels. Um, and at that meeting, um, it was a MS nurse, pro European meeting, and the person chairing it was from northern Italy and they couldn't come because northern Italy had just gone into lockdown. We could hear the sirens in the background

We could like we weren't really aware of what was going on. And all of us at that meeting were kind of looking at each other and going, We've got to get back. We've got to get home

We've got to go on trains and buses and all kinds of things. And so I arrived back in the UK with a really strong sense of what was going on to to to find people here going, Oh, it's just flu. It's just a cold

And I was like, I I know it's not so I kind of went into shielding a few days before, um, and then suddenly we were into lockdown, and I got a letter saying Shield, and it's like, Yeah, no, I I know I am, Um, But I did get a letter in the post saying you're very vulnerable. You're on immunosuppressants. Um Yeah

How did you did you find that kind of information useful? Like, Did it make sense to you? Did it Did it Did you know what to do As a result of getting a letter? To be honest, the letter didn't tell me anything I wasn't already doing, so I'd already gone by. I need to not do the choir concert that was scheduled for that weekend. I was like breathing over loads of people is not a good idea

Especially since I'd just been travelling, um, across Europe. Um, but yeah, I had kind of already worked out everything that was in that letter. Um, and, you know, the kind of stay in don't see anyone only keep contact to a minimal

I was like, Yeah, And at that time, we didn't know if it was airborne. So we didn't really know at that very outset whether or not you could open the windows whether, you know, it was like, Oh, it was quite scary. And that stuff, of course, wasn't in the shielding letter because no one no one knew

Yeah, really? Um, it just took me back to, like when I was, like, kind of leaving the post there for five days. And, um, yeah, we have certainly been on a journey. Can I ask you about like you've talked about? Um So something really struck me about people saying that you were overreacting

Like, did people really say that? And how did you feel like in those few days in between me getting back from Brussels and the whole country going into lockdown? Um, yeah, there was a kind of Oh, darling, if that's what you think is best, you know, um, yeah, from, you know, P A s. And, yeah, people around me who were like, OK, all right. Yeah, whatever you think it's like, Oh, and this is what the entire country thinks

This is what everyone's doing. I'm not mad. Do you think it was different for disabled people? I think it was much more scary, I think for those of us who are told you, you know, you're at real risk

You could be really ill. Um, with this and you're not gonna be any kind of priority if there's a lack of ventilators. If there's a lack of hospital treatment, you're not gonna be top priority

You're gonna be left And that was a horrible, horrible feeling because there was no there was no like this would be discussed or or do you have AD n r or there was nothing. It was just like right. If we've got to make these decisions, this is what's gonna happen that Yeah, that was horrible

Do do you? Why do you think it was so easy for those people to make decisions like that? I guess I guess when there's loads and loads of people and a finite amount of resources is an easy way to just look at people and go, OK, You're in a wheelchair. You're in a wheelchair. You're not getting it right

OK, fine. I guess that was It seemed like an easy or sensible decision. I don't know

I don't know why it was so easy, but it just made me go right. I gotta take this seriously and knock her down kiss. If I get ill, no one's gonna help

Hm? Does it surprise you that they were saying things like do not resuscitate people or only help people that are most likely to the cover? Do you know it didn't surprise me in the context of having the realisation that this was a national major major pandemic and that they were gonna be making decisions. I didn't like it, but it didn't surprise me. What impact do you think that has on your well-being and your mental health? It's so hard to tell because I don't have anything to compare it to

Um, But I I think there was I was so busy trying to put the Hoover around or put the mop around, which I was doing really badly. But, you know, I was trying. I was There was so much stuff that I was like, I'm gonna try and do this and then I'll get my p a s to help if I really can't

But it was so I kind of threw myself into the practical side of it of kind of what needed doing So people go, Oh, what have you been up to? And I'm like, today I I mopped the kitchen. It's like, Oh, is that it? I'm like, Yes, this is why I have p a. So that I don't spend my life just mopping the kitchen because this is what happens

Um, I've got the energy to do something really boring. Um, and that's it. So mental Health wise, I struggled, but I don't think I struggled more than I don't think I had more mental health problems than most people

If that makes sense, it does. Yeah. Yeah

So a lot of people that shared their stories talked about, like, their relationships or services. Like, what was your experiences of services during the pandemic? Oh, well, um, I had started physio at home, um, a week before lockdown. And so that was it

I started physio, and then it stopped, and it hasn't restarted again. And it's about a year. Wait until I will get it

Um, and over that pandemic, I I could stand up. I could wait there and walk a few steps and, you know, with a frame beforehand, and I can't now, I didn't dare like during the whole, you know, almost two years of the pandemic just didn't dare on my own. It was too risky to try, and then I couldn't

And it's a year still until I get any physio. So, um, you know, the the service has stopped, but I wouldn't have wanted them to come in, so It's not like I was sat there going, Oh, why aren't they coming round? I wouldn't have wanted someone who was going from person to person to person to come in and do it. Um, so, yeah, that was physio

I mean, there were some good things in that, um, the MS nurse appointments went online. Um, neurologist appointments for online. Um, so I didn't have to travel up there, but still could check

Check in and keep in touch. I still haven't seen a doctor. I'm physically seeing my doctor now

And but it's near 2023 isn't it, like, three years? Yeah, it's a bit crazy. Yeah, I I didn't even get online before covid I didn't even use. I didn't know about Zoom

Really? I have no, like, Zoom was like my covid experience. Like Oh, wow. Yeah

I just assumed that you were a wizard. All of this and no, no, like digital before covid. So there have been positive, I suppose that have come along from pandemic

So I wanted to ask you There is lots of talk about, um, sort of. So there is lots of talk and lots of people say, like post covid world or, you know, a life after covid. What does that feeling look like for you? Um, I travel less, Um, because more stuff is now online

So where I used to physically go to, um, meetings and stuff all over the, you know, Europe and all over the country. A lot of stuff now is online. Um, so yeah, that's that's a big difference

Um, and I mean, to be honest with you, as soon as shielding ended, um, and we were let out. I was, like, a bat out of hell down to get my eyebrows dyed like That was the best thing I did. So I very quickly was like, OK, I need to, you know, resume life because I'm not very good in captivity

Yeah. So things have gone gradually back to as some kind of normal. Do you still worry about covid? Um no, not so much

Because the once the vaccinations were in and I was vaccinated, I mean, I got covid. Um, I think you did as well. We all got it at the same time, didn't we? Um, yeah

And so once we'd survive it. And that was before the vaccinations. It was like, OK, I was less scared of it because I lived to tell the tale

Um, and now, you know, I wouldn't not get my vaccines, but I kind of feel more secure with them. So I was wondering if you would like So this project is looking at the experience of deaf and disabled people during COVID. And I'm just wondering, like, what do you think we've learned as a result of the pandemic as a society or a about deaf and disabled people's lives? I don't know if very much has been learned about I I think that there's to an extent people who are disabled certainly would just kind of left

It was like, OK, if they die, they die. They're not gonna be the priority. And we're not gonna, you know, prioritise them

And I don't know, I don't personally get the feeling the much has changed. I mean, I certainly did get the feeling during it. Everyone was offering to help

People were so happy when I went. Please, can someone collect a prescription for me, please? Can someone if they're in the supermarket, get me whatever. Um, people were just really happy to be able to help whether it's neighbours, people from choir or whether, you know, people were desperate to help

And I don't think I don't think that's different. I think people have always been lovely like that. Um, but on a societal level, No, not sure, but anything and things change

OK, so my next question would be So what would you want to tell the covid inquiry? So what does the covid inquiry we need to hear about, um, in relation to the expense of deaf and disabled people? Um, firstly, get P PE out quickly to people who are disabled. Um, that is, I think, an essential thing that we can take from this pandemic because that would have made such a difference if we had mas p s could come in. Um, that would have made a massive difference at the start of the pandemic

Um, just that one thing. So, um, having a big stockpile of of P p. A, um I would say is definitely something to learn

Um, you know, obviously being better prepared with companies that are gonna make ventilators. Um, you know, all the practical things that would mean that disabled people when left. Um, that would be really important

Um, I think there were some really good initiatives. Um, like my GP surgery after pretty pretty quickly after, probably after two or three weeks. Um, set up, um, sort of training to help get people online

I mean, you had to have someone who could help you get online to do the training, if that made sense. But but I think they realised that tackling social isolation was a really important thing and to get as many people as they could, um, connected and and trained up. So I think those things to make sure that people aren't isolated are really important

Um, and I mean, I'm I'm not deaf, but I do have, um very strange hearing problems, um, with caused by the multiple sclerosis and so I can nip bleed. Um, really well, and I really struggled with the masks. I can't imagine how difficult it would have been if you were, um, deaf because I struggled

Um, and if they can that have masks that I have, you know, the clear the clear plastic so you can see the mouths of people who are working in shops on till. Check out. Uh, you know, the p A who are going in to people who are deaf and, um, also disabled

You know, things like that. Um I think there are things that could make a real practical difference if we well prepared better. And what role do you think disabled people have in in that preparation? Or that making something different? You know, I think it is giving the ideas and just letting people know what they struggled with so that there's a comprehensive list of what needs to be done

Um, I think really stuff like like this where you know you're reaching out and not asking people like what was difficult. What would you need? You know, that is really important. I think as long as the the onus isn't put on us when to to suddenly, like, be able to manage everything

I think so often when there's a crisis, it's like down to the individuals to cope. And actually, we kind of had enough to deal with just staying alive without having to also try and manage all of that stuff. Absolutely

Do you have anything else you wanted to share about your experiences. Yeah, I think, Um, for me, I went out at I used to get up at 3. 30 in the morning and then And because it takes me, like, three hours to go to the bathroom and get myself carefully dressed, Um, but then go out at the literally at the crack of dawn

Um, and either go down to the sea and go for a scoot. Um, or often I'd go out and do the gardening at, like, six o'clock in the morning. Um, and make sure that I was in by half past six

Um, yeah, that was the latest. I'd be out. So once I was shielding, I also went out the front door every day

Um and that I think was so important. And that wasn't made clear. Um, that wasn't made clear in the building that the idea and the intention behind it wasn't

Don't leave the house. It's don't be around. Other people don't risk catching the virus, but actually, it's not

People were really worried that I was leaving the flat, and they were like, Oh, but you're shielding. I'm like, Yeah, but it's five o'clock in the morning like I'm not gonna see another human being like. It's fine to go outside, and it's good for me

And it means that everybody else, all my neighbours get to see flowers and colour and life when they look out the window. And that's really important. And yeah, so I think, Yeah, that possibly having better? Better advice, actually on shielding in terms of what the intention is would have been useful

Yeah. Brilliant. I don't have any more questions

Do you have any for me? Oh, yeah. Like, how did you manage during covid? Oh, gosh. I, um I think it was, and I was just when you were talking about the, um the guidance, Um, and I I just remember taking like because I was involved in developing some of it

So I I just remember being a bit of a lag between what was needed and what came out and then so much about your own kind of people having to take the responsibility themselves. And that for me, was just like, I just don't know what to do. I was paralysed with, um, having to make decisions

Um, And for me, like the decisions that I made weren't just based on me like they was based on my husband. Like, you know, he had to go to work. And, like, I remember, I don't know how it got in there, but it did get in there like we would, um, if we lived with people, we would use separate cooking arrangements and bathrooms

And I was like, I don't really live in a mansion I live in the two up, two down. And how is that possible? Um, and how fearful I was that he could kill me or people that came into my life could kill me. But then part of me was like, I need to connect

I I needed people. Yeah, any any. Any anything that I did was with all the best intentions

But it was just me making it up myself went along, Yeah, I think that's all any of us could do. Was to kind of make our own decisions really about what we needed. And I got really annoyed when other people tried to tell me what I should be doing and or had opinions about the choices that I was making because it didn't affect very rarely did my decisions affect anyone other than me

And, uh so I'm like, Oh, I think we've all got to go. Where is that line for me, personally, About what I do and who I can see and what is OK? It's very difficult, very difficult trying to work that out for yourself. But that's all we could do, wasn't it? Was, Yeah

I mean, it was quite easy to work it out, but the difficult bit was the actually. How do then other people make sense of that? And And I think if I'm honest, a lot of people found it hard and found it as maybe a personal rejection or a, um didn't really necessarily understand that some of my ways of making sense of it and doing things was just because that's all I could do at that time. And it was enough to get me through

Yeah, like I think it's like when people would go, What have you been up to? And it's like trying not to die. That, like, that, was on a basic level. That that was it, wasn't it? It was like that's all we could do was try not to try not to stay Yeah, definitely

And it was just that. Plus, I just remember not being able to do TV or radio because it was just well, like, depressing and more scary and then having to maybe be really conscious about who I talked to because there were some people. If you spoke to them, it would have an impact on them or them Speaking to you would have an impact

It was like you had to kind of preempt everything was so hard. Yeah, I I think I didn't do any of the big zoom things. I just stuck to people that I knew

And after a few months, I went back to doing voluntary work and getting involved, but for the 1st 1st bit don't know about you, but I was just like, right. I'm just gonna concentrate and try and work this out and not die if possible, and try and work out what I need fundamentally. Um, And then I can introduce other stuff and other people and worrying about other things because I live on my own

So it's kind of different. I could kind of go right. It's fucking It was the It was like, mind blowing because I obviously I don't live on my own

So it was like, Now I need to figure out this person in my life. And then I just think some p a s were really, really clear that they wouldn't do certain things like go and have go to parties to see other people. So I had some people that were like, We're gonna be in this with you and other people that were like, Oh, less so

And it was a lot to ask people. Um and then I think it was so many mixed messages, like from government, or like what to do when to do it and people doing different things and like at one point, I'm just gonna make up my own thing. I think we all got to that point where it was like do We had no idea anymore of what we were supposed to be doing, and it was like, OK, I understand the theory behind what I should be doing or to keep myself safe, So I'm just gonna go with seeing people in a way that I think is the same

Hm. It's hard, isn't it? Like there weren't any cut and dries. And I don't think I don't think there could have been any more any more imposed restrictions on us

I think that would have been even harder. Yeah, it certainly felt like the most restrictive way of doing stuff for me. Yeah

Did you felt very restricted? Legally? Yeah, Legally. But also, like there were there were times where I was thinking like I used to think. Oh, like, what if they and it was in my head? Used to be, like, just running

What if they like, um, made a particular couple of hours just for, like, disabled people to do their shopping or what? Like and it felt like, rather than having a world where everybody could interact like disabled people, we just expected to stay at home and get their shopping via these priority schemes or not go out and do any exercise. But actually, these things are really important. Did you not have, like, we my local Tesco's had it at seven

Till eight. In the morning, where it was just vulnerable people who could go in and do their shopping, um, or NHS staff or, you know, frontline services. But, um, yeah, they did have kind of and that carried on quite a long time

It was, I think, only sort of last year, 2021 that they stopped having those allocated times. Yeah, I think they came around a bit later on in the pandemic. And then, like or you know, then there was the priority shopping thing and that, and, uh, one of the most funniest experiences

This is like a terrible experience. So, um, a funny experience, but actually not so funny. So I just got bombarded with, um, food boxes that I just didn't use, so they kind of, like, literally got recycled into the community and other people used them

But I have no idea how I got these food boxes at all from some list somewhere. Um, just constant food parcels. And I'm like, that's hilarious because I got asked if I wanted them, and I said no

Because I'm like, I'm Celia and yeah, you know, definitely. Um and I stupidly thought at the beginning of the pandemic that I could choose what A and that I'd be Well, very quickly. I realised you got what? What was it in stock? Yeah, yeah, yeah

So I I I think like, oh, wow, like they had so much food going around and I used to get three or four parcels a week at some point and, like, no good to me, like they just got sent back into the community. But I just couldn't get off that food list where it I think as well people were so desperate to help it was like and because lots of people know me, I remember the, um, dry cleaning. Um, chap, at one point I was, you know, just sorting stuff like all of us were during the pandemic, and and so I'd, um, left the duvets outside to go to the dry cleaners, and and, uh, there was a note on there going This is my number

There's anything you need. Like I can come round after or I'm only around the corner And, you know, so many people people that you know, I vaguely knew and I was desperately trying to share out anything I needed cos if people were offering, they were desperate to help. And it'd be like, Oh, could you pick up my prescription for me? And people are really happy to so I can I can understand why you got so many food parcels

Because if I said to anyone that I needed food, I would have got, like, crates. Yeah, so it was. It was definitely a mix of it

There were lots of good things like I enjoyed Most Definitely enjoyed, um, doing the mutual aid helpline and the emails where I was helping other people. It took away from, like, me being locked in, but it was definitely an experience. I'm not sure I've fully processed it either

You know, I think having something like multiple sclerosis, which is so up and down, and every day that I can wake up and I'm blind, I can wake up, and I can't. You know, I'm paralysed on one side or whatever, and so we're kind of so used to dealing with, like, the weirdest stuff, just suddenly, like that happening, that actually going Oh, no, I've got to say and there's a killer virus that, you know, I can't like. It was just another I might adapt and change

And then when it was over, it was like, All right, I'll get my eyebrows tied. It was it was kind of like I felt quite well placed for dealing with something major. And I know that for a lot of people who don't go through stuff like we go through and the ups and downs of daily life like it was a sudden, massive thing and they've never experienced anything that took away their independence or their freedom or their like nothing

But I was a bit like, uh, OK, fine, adapt and change. And I think for me knowing, like the reason why I think that I've always had that because I've never really expected this state or social services, anyone to be stepping in because my experience is like they're just not there when you need them sort of thing. And, like I do think there's a lot to learn from how deaf and disabled people carers, people that we would say are struggling

Organise themselves, helped each other with kindness. Um, I know people talk about resilience, but I think there was. There is so much resilience and so much strength within people because of their experiences of, you know, not being able to get out anyway or struggling with their mobility or struggling with their mental health challenges

I think there's a lot to learn from the communities that we Yeah, you're so right. I think there is a lot. And I had quite a few people

Sort of go. Well, I work from home anyway, because I'm not well, and so I've set it up. So the whole world is just doing what I do normally, what's what is the The big deal

And I was like, Oh, gosh, they've got so much to share. They don't even know that their working from home tips are crucial. Mm

Absolutely. Did you have anything else you wanted to add before we come to Ned? No. No, I don't think so

Have you? No. Um, so I wish you all the best. I'm looking forward to seeing how you, um next year's, um, kind of flowers

Get on. And thank you for sharing your life with us. It's really a pleasure to be inside you

Thank you for asking me. It's, um Yeah, it's great. And it feels like it does feel like a long time ago

And of course, it's not. It's not in the big scheme of things, is it? No. If you're happy, I'm gonna stop the recording

There.