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

Please Report the Errrors?

Hazel, could you tell me a little bit about yourself?

OK,

uh, I'm

seven years old.

Uh, I was born in,

I went to

art school, which was very unusual in my family.

Uh, we didn't know anybody who had been to art school.

Um, I worked in community arts for

all of my life. Um,

I from 20

10 or no, from 19.

Oh, for God's sake.

So my partner, unfortunately, died in 19.

the year after my dad had died.

Uh, it was very shocking. He was only 33 years old,

and I brought up his daughter, which is my stepdaughter, alongside her mum.

Um,

and, uh, now I have two grandsons from from

that, which is lovely.

Um,

I looked after my mother from

1997 who was becoming increasingly disabled.

So I came home to live with her,

um, and played a caring role. Though she was still very active in the early days.

Um, she was a volunteer at

n General having been a

hairdresser before that,

Uh, so I grew up in the hairdressers,

um, before my preschool years are entirely spent,

um,

in a hairdresser

But thank you for being so, um,

she, you know,

giving off kind of your life and your experience really appreciate kind

of you helping me to understand a bit about your life.

So, Hazel, I was wondering if you could tell me

what impact did the covid pandemic and lockdown have on your life

as a deaf or disabled person for the life of your family?

Like, what impact did it have?

Oh, gosh. Um,

I'm not entirely sure we really know yet.

This is the first thing I'd like to say.

Um,

because, uh,

I think it

We're not out of it.

Uh, my sister

and my brother-in-law have only just had covid,

uh, for the second or third time, and actually both been quite ill.

Um,

and they're older than me.

Uh,

so I don't exactly feel like we're through it

to have the perspective of of what it meant.

Um,

I have,

I think I was incredibly lucky

during covid

because although

generally I live by myself and I run a guest house here in in my family home.

Um,

so between guests, I am living by myself. Um,

it so happened that various friends were in

between housing and ended up staying here.

Uh, so, in fact, I was in a bubble with a couple of other people.

and,

uh,

so that

element of

being entirely alone didn't happen

for me.

Um,

the element of feeling

absolutely useless and helpless

because my niece has MS and lived by herself and, uh, is, um,

completely, uh, non ambulant.

But she can't walk at all. She can't transfer easily.

Um,

and

she sent all her p A s home

on the basis that they were visiting other people as well.

And she they had all received She and other people in

her situation had received a letter that pretty much said,

You will die.

Um,

and so she was like, No, I'm not. I'm shutting the door and kicking everybody out

and

not being able to just

drop sticks and go and help her

was awful.

Um,

because

kind of I come from

both a family and

So I I come from a family and a

neighbourhood where people really look out for each other.

Um,

so I was very frustrated and not being able to look after my family,

Uh, who are all spread quite wide,

Um,

and then kind of just took the view that I'll do

whatever I could locally,

so that

you know that thing of if you do something locally,

you hope that someone's doing something locally

for the rest of your family.

Um,

and, um,

we actually locked down a good week before

government did,

uh,

because I have friends who are very vulnerable

and family that are very vulnerable.

And we just thought, Well, what What the hell is the government doing?

It's not doing anything

we're gonna isolate.

Um,

I hope

previously,

um, over a number of years, I've run,

uh, community arts workshops in my front garden,

Um, and actually just used to sit out there with a cup of tea and chat to passers by

because I spent 22 years of my life on a housing estate

where everybody had their front door open

and everybody knew each other.

So coming back to the family home, it felt it's a suburban kind of street.

Uh, and it feels very much like people go inside, shut their front door,

and that's it.

And then, you know, whoever you know,

and, uh,

so quite early on in lockdown,

sat outside with a cup of tea,

even though we weren't supposed to.

Uh, and 22 of my friends

locally who live by themselves

and have no access to

personal outdoor space. I have a garden. They don't,

They came round and socially distanced sitting outside in my front garden with me.

Um and we just kind of went actually for our mental health, we need to do this.

Uh,

yeah.

If somebody comes along and decides to find us, we'll have to put up with that.

Uh, but

they

they were really relieved from that experience

shortly after that,

I ha Well, before way before this,

I had suggested that we were gonna make a crochet Christmas trip.

Um, for Christmas, Uh, with local knitting groups

and because of lockdown, I'd kind of put it I thought it would take us a year to make it,

But I'd kind of put it to one side, thinking

people aren't gonna be, you know,

they're gonna be so worried they're not gonna want to do this.

And then a few people started contacting me, saying,

Could we get on with this project because we can all do

it in our homes and know that somehow we're all still interconnected.

And, of course, with Facebook. Um, a lot of these people

are

actually keep in touch with each other

in that way.

Um,

so we kicked that project off, and it was,

I think, a lifesaver for me and for many others

in that it gave you something to focus on.

Um,

there was an end result that was gonna happen.

Uh, you still felt connected to people, even though you couldn't see them.

Um, and,

uh,

yeah, you know, we were very busy doing it.

The other thing,

that was interesting as the weather got warmer and we were very lucky.

Uh, in the first year that we actually had decent weather,

um,

I opened up my sideway to the house,

and we held,

uh,

art classes in the back garden

where people brought all their own equipment.

They brought their cup of tea in a flask, and we all sat socially distanced.

Um, and most of the people who came to that

are people who are,

um,

living by themselves.

Um, and so this was sort of really important,

uh,

activity because of course, the whilst we were all trying to not get covid

the

isolation and loneliness aspect.

Um,

and

to some extent, the terror aspect,

uh,

was an uncertainty.

Um,

was very much giving people,

you know,

mental health issues. Um,

yeah.

So that was you.

You really did help me understand, Like,

some of the things that you did as a community and as an individual.

Um, but I just wanted to go back a bit.

So you said that you're on a guest house, like, and you've talked about,

um, doing

things that

you wanted to do,

Such as connecting and not worrying about getting a fine and all that sort of stuff.

And

how did you make sense of all of the rules and what was happening

and what you needed to do and how you would stay safe in covid.

How did

you make?

I mean,

we were getting

very conflicting information,

uh, from, um,

the government,

uh,

most of

my friends and I felt we weren't being asked to do enough to keep safe.

Um,

there was this kind of big thing about making it down to the individual,

uh, so that you were responsible for what you did.

Um,

but actually,

with no knowledge

I mean at one point. And

I mean,

I know for a fact because I have people

in public health England who are friends of mine

that the government wasn't taking

that much notice of some of the advice they were being given.

Um, and in fact, the advice that the government

let through,

uh was flimsy,

to say the least. And confusing

like,

Oh, what was the one?

Uh,

it was something, like, be aware

or something like that. Not cover your face. Do this.

Do you know, really practical stuff, but, like, be aware.

Well, what's that gonna do? Hi. I'm aware

doesn't do anything.

Um,

so,

yeah,

it felt very much like we should just

we had to make it up. Hm.

I can ask you because you touched and cover your face. So how did you manage? Like

P PE all of that stuff. And

like, can you tell me about your experience of accessing p PE and

well,

basically, um,

I made it,

uh,

So,

uh,

made loads and loads of masks, um, out of nice fabric

and, uh, also sold them to raise um,

some money for a local charity.

Uh,

the

in in in terms of the guest house we had to shut,

Uh, I was shut for nearly two years,

and I have to say I didn't manage to get any of the government grants.

The only government grant I got was the £500 when I actually had covid.

And because I was self-employed,

I That was discretionary on behalf of the local council,

and

I was given the wrong information.

I was told I couldn't get it,

and I can't remember who told me.

Oh, just go for it and see if you can.

But I was told I absolutely couldn't get it.

Um, but I was pretty destitute at the time and taking out bank loans to to survive.

Um,

and, um,

I thought, Oh, no, I'm gonna I'm just gonna try. I'm gonna try.

And but But it

actually took three months

to get it.

So if it hadn't have been for the kindness of friends

uh, helping me out, give me food parcels. Uh, give me money.

Um,

it would have been a very different kettle of fish. I wouldn't have been able to pay

the household bills, I wouldn't have been able to heat or light the house.

Um,

it was

Yeah.

I mean, it was very confusing for self-employed people.

Um, because there was sort of a lot of

you can get this, you can get that. And then you went to apply for it, and you couldn't.

How did it

make you feel? And you might not be able to answer this

knowing that

it was really difficult for Self-employed people.

But then other groups of people seemed to have got it a lot easier.

Well,

a a number of my friends were on, um,

furlough,

and

I was very grateful they were furloughed,

Uh, because they deserve to be.

but it did feel very, uh,

unequal

in terms of the I think there should have just

been a a government support scheme where everybody got paid something

so that everybody could manage.

Um,

yeah, and of course.

the people who got the support of the people who were in the jobs

and if you were on a well paid job,

you got better furlough than if you're on a badly paid job.

So, eight, was it 80% I think people got

so 80% of a lot

is still a lot, whereas 80% of

minimum wage is crap.

Um,

so it all felt very unequal.

Um,

And

in that inequality,

you kind of immediately know that

particular groups of people from ethnic minorities from disability groups,

um,

have a tendency

to be in the lower women

Have a tendency to if you look at the sort of big statistics,

uh, are still,

um,

in lower paid jobs or lower income jobs.

Um,

so,

you know, yet again,

uh, the inequalities hit those who are already hardest hit.

Um,

I have to say that they were I mean, I have a friend up the road

and he was

absolutely on the breadline,

and,

um,

people were giving meetings of food. I was passing them to him.

Uh, there was a fantastic

Asian project

that was doing free boxed food

and delivering it to people.

And without that, he he would have starved pretty much

because he's not somebody who's particularly knitted in to the local community.

He doesn't do Facebook.

Um,

he was really

really out there,

and he he he's a musician.

Um, and

he had had his best ever year of gigs cancelled Monday.

So, like 10 grands worth of gigs

gone

overnight?

Um,

yeah.

Did it surprise you?

The effects that covid had on the groups of people you've mentioned?

Was it a surprise or

No,

no,

no.

Uh,

I wished I'd been surprised if you see what I mean. I would like to

not be so

cynical as I am

in terms of what I think's gonna happen about certain things.

Um,

but,

you know, the whole thing of

government ministers

flouting the rules are not being brought to task

when individuals were being fined.

Uh, none of this surprised me at all,

and that's kind of a bit upsetting. Really.

I would like to be a little bit more naive and, um,

expecting better of people.

I just I

just don't expect much from

government,

and I have to say that goes across

most of the governments that we've had. Um,

yeah,

think there's no real understanding.

And even if they is somebody who came from a background where they should understand

what it's like at the bottom,

people forget people forget really easily.

Even if they came from that background themselves?

Um,

yeah, that's hugely cynical of me, but it's true.

Um,

that's my Sorry. That's my experience. Let's say

your experience is very welcome here, Hazel.

Um,

I'm

really

interested.

You asked me about the p PE.

didn't quite

finish

answering that.

So even to open up as a guest house, I had to put loads of things in place.

Um,

and

also at at, uh

um,

So I had to go to,

uh I had to get in certain sorts of

chemicals so that because people were very confused between antibio

and, uh, antiviral,

um,

And, uh, fortunately, I wasn't I I was very clear on what the difference was.

So it made the transition for me

in terms of what my cleaning regimes and things had to be when I reopened.

Uh, easier.

But,

um,

But what I found really, really hard in terms of, uh, p PE was,

I'm a very touchy feely person.

If somebody's crying, I want to give them a hug.

If I'm upset, I wanna hug.

And also, I

read people's faces a lot.

I get my clues as to whether they're comfortable with me,

whether they're happy with what I've just said from looking at their faces.

all of that was very difficult for me. I lost all my clues

as to what people were thinking or saying,

Um,

and just the comfort of a cuddle. Yeah.

Thanks. Thanks, Hazel, for sharing it with me. That sounds really

awful.

Um,

and really appreciate you sharing it even,

like, you know, just thank you.

Um,

can I

ask you, like, So you talked about

sort of

your business and

the support, And I'm not really This,

uh, kind of inquiry is really looking at

the impact it had covid had on disabled people.

Um,

and carers

like, what

impact do you think Covid had, um,

you know, on disabled people and carers.

Um,

well, I am more disabled than I was at the beginning of it.

It's difficult to assess for me because I'm 67.

So was this something that was coming anyway?

I suspect not.

Um,

So my mobility

has massively decreased

over the years of covid.

Uh, and I think that's partly through,

um,

uh,

use,

you know, partly through not walking around as much.

Um,

partly through covid itself. Uh, so having had it

you know, not recovering entirely.

Um,

and

it's weird because most

most of the people I know who are disabled have degenerative diseases,

degenerative conditions,

and

so it's hard to unpick.

But nearly everybody has noticeably lost

some element of what they had before. Covid.

Now,

uh, be it

their ability to transfer?

Um,

yeah,

and that's that's really

hard and weird because partly because

with some friends and family,

um,

we haven't been able to see each other as often.

Uh, so it's It's really painful

have that gap in not seeing people and then seeing them

and you go, Oh, my God,

you know, this is not where you were two years ago,

and

it's

it.

It's almost impossible to unpick, I think,

Um,

yeah,

can I share the impact that COVID has on

your mental health and well being?

Um,

I I think it's been

really,

it's increased my

anxiety. It's

certainly increased. My,

I I have

OPIC. I can't even say the word dystopian dreams, apparently

which I've had for a very long time.

And it certainly increased

the

nature of them. I mean, how frightening they actually are.

Um,

and it

certainly massively

affected my sense of

any sort of well being because

to see

people who you cannot

help,

Um,

and you can't see them so often,

Uh,

has been really painful.

Yeah.

Thank you for sharing. Ha. Hazel,

I want you to

ask you about. Or so I wanted to, like, maybe share this expression.

So there's lots of talk about a post pandemic world.

What does the post pandemic world feel look like to you

and the people you you have in your life?

I'm afraid I don't think we're post pandemic.

So in my head,

I haven't

kind of made that jump.

Um,

because around me, people are getting ill again.

Uh,

and and whilst people

are saying, you know Oh, I'm I'm quadrupled back. Now.

If I get ill, it's not the end of the world.

Um, my brother in law and my sister have both had it recently,

and they're in their seventies,

and they've been really ill.

Uh,

and actually

I suspect

that they won't

bounce back

any time soon.

You know, they will get, they will be alive.

They will get better.

But I I think it has been very debilitating for them.

So I I I mean, this post pandemic world.

Um, I've been on the tube a few times and nobody's wearing masks.

Um, I wore a mask.

Uh, and I will continue

behave,

um,

with reasonable caution.

Whilst I mean, I will go into the co-op locally,

uh, without a mask.

Um, very quickly. I'm still getting most of my shopping delivered.

Um,

if I go shopping,

I'd jump in and jump out.

If I go somewhere crowded,

I put on a mask.

I'm still pretty much I mean, with my guests,

I'm still sending them something that says,

You know, if you've had any symptoms of covid,

please let me know because we can socially distance.

You know,

I'm not saying to them they can't come,

But I'm saying,

be aware because I'm It's really interesting cos two guests recently,

one wrote back to me and said,

I'm so pleased you're still taking this seriously.

I've just been on an aeroplane, and no one was wearing a mask.

And then another guest wrote back and said,

You know, Oh, I'm fed up with all these films and stuff. It's very off putting.

Can I ask you how that made you feel,

knowing

that

it's been really difficult for yourself, but also many of your loved ones.

You know, you've spoken about there's not a post.

How does it feel

when you hear stuff like that?

Well, you know that people aren't taking it seriously.

kind of want to punch them in the face.

Yeah,

it makes me very angry.

And obviously, because I'm a host,

I can't express that anger.

Mm.

I have to say, Well, that that's your view. But

this is how I'm running it, you know?

Um,

yeah, I

I feel very angry

people who

I mean, I I

think everyone's got to do what they've got to do,

and that's fine.

But

don't involve me in it. If you see what I mean. Don't put me at risk,

like when you say everyone's got to do what they've got to do,

Like, how do you think,

like, do you do you have a view

because you touched on like leadership? Not really doing the things they should do?

Do you think that really

meant people behaved in a particular way?

Do you think there's been a knock on effect to

the way others God, Yes.

Yes.

I mean, there's a very strong belief,

um,

that I've had reported to me if you like

that.

Oh, you know, we didn't need to do all that.

It's because they're trying to control us,

you know? So there's there's all this,

um,

kind of, uh,

I can't think what you call it.

Help. Um

uh,

conspiracy kind of theories around it.

And what's really weird is I mean, particularly friends in Italy, for example,

where there was curfew.

uh,

friends were

saying, uh, I mean, my friends are quite measured. They were saying,

we recognise there is a pandemic. We will take what measures we need to take.

But actually, government is using it to bring in

more totalitarian rules.

And

what's happened?

I think this week

I don't know If it was last week or this week,

Italy has returned a fairly right wing

government,

the

one has to keep a balance in one's head between the conspiracy

theory stuff and the fact that there is actually a pandemic.

And,

you know, I

know people who have died. I know what it was like

for the NHS. I have friends who are doctors

in the NHS.

and,

you know, it was

it wasn't made up that we needed to be this careful.

Um,

but all sorts of things have happened under cover of it.

Mm,

That are very

worrying.

Yeah.

God, this is cheerful, isn't it?

But important

space. Uh,

and I wanted to then ask you,

and I'm gonna come back to a question,

but I wanted to ask you about what

have we can we learn from the covid pandemic lockdown

and particularly with that lens of, you know, disability. And

you know what? Have we learned anything? What could we learn?

I think one of the things we learned locally here was how quickly

the local community could mobilise a

head of government.

Um, well ahead of government.

Um,

and

some of that

was made obviously much easier by,

um,

social media

and the use of social media.

Also, there was a really strong understanding

amongst the local community of who that might miss out.

And people were literally putting leaflets through doors, saying,

you know, let us know if you need food. Let us.

I think that's

a really good reminder

that. Actually, we can do stuff.

Um,

and that people are still prepared to do stuff.

You know,

nobody kind of went

Oh, well, that's the government's job. I'm not gonna do it.

Everybody just went. The government aren't doing anything. We're gonna do it.

We're gonna have to do it.

It's not sustainable for very long

that level, cos

you've actually got poor people feeding poorer people,

not the wealthy feeding the poor.

Um,

but it's

I mean, it's very reminiscent of of the Second World War

in terms of how people on the ground at grassroots

pull together.

And

I think that

that's reassuring in today's world

to know that

that people will still do that

really important points. Hazel,

can I ask you, Hazel,

the inquiry? So there's this covid inquiry

that is really looking at how

things were dealt with

in,

uh, this pandemic.

Um,

what would you like that inquiry to hear? So what does that inquiry need to hear,

right? I I think Sorry. Just going. I'm kind of

going back to what you were saying about the effect on people with disability.

I think the inquiry certainly needs to hear

that people with disability and I speak particularly

of for my my niece at this point,

um,

who

has MS felt completely un

Vaud.

They really felt that if if there were choices to

be made from the sort of letters they had received,

they felt that the that they had to stay

alive themselves because if they ended up in hospital,

they would not be a priority.

And the stories which

are not stories, they are truths.

uh,

the narratives that have come out of some of the

hospitals about people being given do not resuscitate orders when,

uh, they haven't necessarily

said that that was the case.

And the prioritising

of people,

really shows that as a society,

we think that people with disability are less than

so.

So I just wanted to make that point because

I've missed it before, and

I think it's absolutely crucial

that

the government gets the message,

but

they can't treat people like this.

It's yeah,

but it's a whole. I mean, it's it's not just government. It's a whole societal,

but

it's it's, um

ah, institutional.

You know, it's deep within our society

that there are choices to be made, and you choose this one over that one,

and you valid the input that this one's making more than that one.

So,

you know,

or that you think the chances of that one living are

yes. So let's put it all in that way.

And, uh, that that was

absolutely terrifying for a lot of people I know

with disability that thought that if they ended up in hospital,

they would not be a priority.

What about your own experiences, like, you know, did. How did you?

Because I you've talked a lot about

everybody else. Like I

I wonder about you, Hazel. Like, how did you make sense of

being somebody that

you know was

living by themselves being somebody that is,

you know your words older, um,

and somebody that,

you know, support needs of their own.

Yeah.

Um,

I was very lucky. There was hardly any time

during the whole pandemic when I was actually by myself

alone.

And that is

I don't know how it would have been had I been

I can't kind of

pretend that I know.

oh, I

I think the I've already kind of said it cos the this

the emotional support that I need from people

because I do suffer very badly from depression.

Um,

that really hurt.

You know

that Not being able to get a hug,

not being able to see people that are really important to me

not being able to know that they were safe,

you know, that

was

yeah,

I I feel from

I had a party just before

lockdown.

Uh,

it was my 65th birthday.

I which, by the way,

I announced that I wasn't going to have another party till I was 70.

I didn't mean that the rest of the world shouldn't have another party,

but that's sort of what happened.

Um,

but

I am now

67 coming up 68. So 2.5 years older,

I feel about

8 to 10 years older,

I I think I look about 8 to 10 years older.

Um,

I feel like I have had an absolute battering

in all sorts of ways. My physical abilities,

Uh,

physically, where I was in mobility terms

2.5 years ago to where I am now is absolutely crazy.

Um,

and,

uh,

Yeah, My head just feels battered.

Thank I I can't keep on saying thank you. Like I'm just,

that that is very hard to hear.

Um,

but I feel like it needs

to be heard. Like in this important stuff.

Can I ask you, like, can I

what you sort of touch on that

value, Like the whole of society having this issue,

This value issue around disabled people.

So,

um,

what

does the inquiry really need to to hear? Like what? So what needs to change?

Like, what has to change to make it

different

y y

everything.

It's

what needs to change.

think

it's really weird cos you get so far

with governments

and you feel that you have made some change, and then it all disappears again.

Um,

so you know, there's a number of bills really important bills that have gone through

in terms of, uh, disabled rights.

Um,

but

I actually think

more of this more of people understanding

lived experience,

uh, and hearing stories is probably,

you know,

everybody needs to hear them

in my in my old job,

I used to

I I was funded by the Department of the Environment during Thatcher's years,

and I frequently had environment ministers,

uh, coming down to housing estates,

um,

to to see the projects we were doing

and they'd stand there going,

Oh, my God, these are really good people.

I didn't think people like lived this lived on housing estates.

You know, these are really they get things done.

We should invest more in them so they can do more themselves. La la, la la

And you know what? If you did the same again today,

you'd hear the same

because there doesn't seem to be

systemic learning.

And that's

this is where I kind of feel a bit long in the tooth and

a little bit cynical and

not that helpful,

because I've kind of heard and seen

those amazing pilot projects

that happen

all over this country.

And the statement said,

and and and,

you know,

from the sixties onwards,

I have Well, you can go back to the fifties,

uh, you know, amazing projects in education

in,

um,

bringing people with disability into the workplace,

um,

in,

uh, architecture to ensure that

that no building is built that isn't accessible. All these things.

and yet they still seemed to be like

prize pilot project

that never quite got rolled out.

So I suppose what I would like to see is

some means by which

governments actually learn.

Sorry. I'm just recalling now that that

I mean, only a couple of weeks ago, several civil servants were fired,

and the civil service used to be the repository of policy

That,

in a way, helped it not to be too turmoil through government, but to say no.

This is what we know.

And,

uh,

I have a set.

So this is awful, because I have a sense we're moving towards the American system,

whereby

the whole of the the the bureaucracy that supports government

is political as well.

Whereas in the past, it's been

That's my guest at the

front door. Anything you would like to end with?

I'm gonna have to go like

OK,

thanks.

Bye bye.

We can pick up for a round up. Brilliant. Thank you.

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Posted By

Author

streetreporter

Post date

18/04/2023