Hazel talks to Isaac about her experiences of community support during the COVID lockdowns and how there are significant differences in our society in terms of how Deaf and Disabled people are treated. 

Disability Rights UK (DRUK) and  People’s Voice Media have engaged in dialogues with Deaf and Disabled people about their experiences of the COVID-19 pandemic and lockdowns. These lived experience narratives detail how people were treated by health and social care professionals, together with the difficulties Deaf and Disabled people faced when support and services were withdrawn by local authorities. Additionally, the dialogues explore how Deaf and Disabled people are currently managing in their daily lives, their hopes and expectations in terms of the COVID Inquiry.

These narratives are great ways to learn from one another, and can be powerful communication methods. Some of the people sharing their lived experience are speaking on behalf of people they care for who do not communicate verbally.

Hazel, could you tell me a little bit about yourself? Um OK, uh, I'm 60 seven years old. Uh, I was born in, um 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 20 10 or no, from 19. Oh, for God's sake. So my partner, unfortunately, died in 19

96 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, uh 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. Um 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 a 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, um and, uh, so quite early on in lockdown, I 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, um 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 of 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, I 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, so 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. Um 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

So 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, I 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. I 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 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, um 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

So 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 to 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, um it's increased my anxiety. It's certainly increased. My, um 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. 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, so 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 to 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. So 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

I 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 at 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 on 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. Um 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, so 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

Um 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. Um 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 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

So 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 at 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. Um 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, um really shows that as a society, we 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 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, as 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. Um 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, um Yeah, My head just feels battered. Thank I I can't keep on saying thank you

Like I'm just, um 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 like 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 O y y everything. It's what needs to change

I 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 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. Um and yet they still seemed to be like a 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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