Report transcript in: Shana's story -Narratives of the Global Impact of COVID-19

Please Report the Errrors?

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.

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,

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.

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

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,

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 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.

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

wouldn't have wanted them to come in,

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

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.

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,

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?

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,

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.

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,

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.

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,

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,

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,

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.

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.

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

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

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

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Posted By

Author

streetreporter

Post date

19/04/2023