Donna gives Isaac her personal experience of being ignored by social services. She understands that COVID could not have been stopped, but she believes the organisations and professionals who are supposed to work with Deaf and Disabled people were not prepared or equipped to cope with COVID, because generally they don’t understand what it’s like to live with impairments and disabilities

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social care professionals, together with the difficulties Deaf and Disabled people faced when support and services were withdrawn by local authorities.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.

I'm gonna Could you please introduce yourself my whole name? Yeah. Good. Oh, I don't like Donna. Just call me Donna

Please tell me a little bit about you. Um, I live in Luton. I've lived in Luton my whole life

I was born in Luton. I was born at the Luton and Dunstable Hospital. Um, I'm 35

Um, I have a physical disability, um, cerebral palsy, along with other medical issues, which I will not list because it is too long and we haven't got all month. Um, but yeah, that's me. Thanks, Donna

So, what do you enjoy doing during your spare time? Like, what's what's your passion? I'd probably say my work. Um because my work helps me to control light elements of my mental health. Um, without my work, I'd be lost

Um, because times have been very testing, not just through covid, but after that, as well. Um, I also enjoy doing diamond art, which is like, these pictures, and you put these little diamonds on. You have to do one by one

Um, I love doing arts and crafts. Love, love doing sequin art. Um, watching films

Um, I like singing. Um, yeah, What's your work? So you started your same work? Yeah, it was. I kind of worked for in control

No, actually, I do work for in control. Um, I work with Julie Stanfield, and my actual title is I'm a volunteer. And she's actually given me a title, which is really cool, which is head of reality, cos she's figured out cos she's figured out that everyone needs a reality check, and I'm the perfect person for it

What kind of, uh, work is it what kind of things you do. So I'm a bit of a odd bud, so I do a bit of everything. So if julie says to me, Oh, can you lead? Um, like an inquiry? I will lead an inquiry

At the moment, I'm doing partner policies and partnerships within Lyn Awe, and I swear that it is saving my life right now. Um, if you want me to do something, I'll do it. Um, I'm I do a bit of everything

Brilliant. So this, um, project is about exploring, and I know you're passionate and articulate about the rights of disabled people. Uh, so what impact did covid or the covid pandemic and lockdowns have on your life as a deaf and a disabled as a deaf or disabled person

Right? So the one thing that I absolutely hated now, as most people that know me, I am not a computer geek I wouldn't do things like Zoom or anything like that. I love face to face. I couldn't do that

I was going crazy. I was climbing up the walls. I was calling Julie and going, What do I do? She goes, Well, you're gonna have to get used to life online

And I'm like, Well, that's no good to me. I need I need the I No, that I really struggled with And just not seeing the people that I loved was really, really hard. How did you manage those hard times? Like so the first thing I decided to do was stop wallowing in my own peak because there's nothing I can do about it

And then I thought about it. Well, I live my life practically like this every single day anyway, so I don't get to go out anywhere. So everyone else is now experiencing what I'm gonna expe what I experience every day, and they're probably struggling with it just as much

So I decided to set up a a a YouTube channel, and I decided to do, um, Facebook videos just of arts and crafts and chatting and stuff. And just seeing how people were through that time, um, I also helped Julie did it to in control design. Um, the Big Hug award, Um, which I named because I got very upset because no one was allowed to hug anybody

And I thought, What better way to To bring that home and say, Look, there's people that get recognised every single day, but there's people that work their asses off yet they keep their chins up and they don't say anything. And they don't, you know, accept praise or anything like that. And it went viral on Twitter

So I was very proud of that. Brilliant. Thank you for sharing

So thinking about your experiences as a person that receives care and support, how did you understand or manage? Kind of, um, getting through covid. Like, how did you organise your life when everybody was in lockdown and there was this virus around that could, um, hurt people? Um, I'm quite good at adapting, cos I have to adapt anyway, Cos every day is like challenging for me. But I have to say this was a little tricky because like you couldn't just go out to the shops and everyone else was panicked by it

So you'd have to be thinking, How am I supposed to get food? So I ended up having to, like, phone the council and get like the boxes that they would deliver to your door. And then as for my care cos my care obviously live in care, they were instructed a bit more better as well. Everyone had to wear P PE

Everyone had to make sure there was enough p PE and yeah, that was not so bad because the way my care company run, it's quite smooth. But I wouldn't say it was easy for the care company. I don't I don't think it was because they had to be very careful who they could send in

Um, there was one time where it was really difficult because my carers came down with Covid and one of them was here and I had to stay here and they had to stay here. I didn't get covid. I do not know how I didn't, um Then there was the jabs

Yeah, right. OK, so there was those. And the third one nearly knocked me off my feet

But I suppose you just have to. So what you need to do is you need to get your after you got over wimping. You need to get your mindset right

It's gonna be bad today, but it will get better. It it will get better. You can't give up

I know. Yeah. Do you think there was enough information and support out there for people? No

Couldn't get hold of my social worker. He completely disappeared. Couldn't talk to no one because every, you know, it was a case of everyone

Literally was. Even though, like, luckily, I had Julie and my carers because social services. Yeah, and my friend, who just said me because she's in the background

Um, you know, basically, social services didn't even talk to me like didn't even give me a call to find out if everything was all right to find out if I was all right. In fact, I remember calling my social workers to asking him if he was all right. Cos I was worried

What response did you get? Oh, hello, Donna. I'm like, OK, so are you OK? Yeah. Yeah

How are you? I'm like, Oh, my God. So I ring you to find out whether you're OK, but yeah, you're not making that effort. And it's phone calls

Not that hard to make to To to find out if I'm OK, dude. So that was hard, because if you needed a service Oh, no, you can't come in. And then I was waiting for my operation

Then they were like, No, it's covid. They were using the excuse of covid. And then I just got, like, annoyed because they were They were starting to use the word covid as an excuse

That's the other thing that really annoyed me about covid. They were starting to use it as an excuse to not do things. And to this day, they are still using it as an excuse

Sounds really, really hard. And that sounds really shit, to be honest with you, um, I'm so grateful that that you're sharing your experience. So in terms of, like, not getting that support, um, you talked about, but what about? Kind of like, how did you keep up to date? Like, how did you know what to do? Like, did you just make it up as you went along? Or did? How did you manage in that? In that kind of space of not getting any information or support? Well, it did upset my mental health

It did upset my EU p d. I remember having a massive EU p D attack and just losing the will and losing the plot to live. At one point, I didn't want to be around anymore

Um, it was so bad. Um, but I did have the likes of Julie. Um, if I needed something or if I wasn't sure of something I didn't really wanna turn on the news because I'd found them more depressing every single day

So I just kind of I I kind of wing it. I winged it. I I just did what Donna does best

And I I win it. It wasn't easy. Yeah

Do you think like, do you do? Do you feel let down to pe Do you think people feel let down or what? Yeah, I I definitely feel that. Yeah, yeah, definitely. Yeah

Covid could not be helped. Um, Covid. It was almost like the world wasn't ready for covid

And technically, it should have been. I feel nobody knew what to do. Nobody

Nobody was well informed. There was not like a backup plan. The government didn't know what they were doing one week to the next

That's another thing. But they'd tell you one instruction and they tell you another instruction, and then they go and break the rules. Hilarious

Don't think so. Dude, I never missed that one. I was like, Right, So you tell one thing for one person, then you do another thing for another, and then still, they're using the excuse for covid like, don't do it

But now it's just like, Look, covid is a thing. You're just gonna have to learn to live with it. But yeah, it had It has left its mask

Mark has Thanks, Donna. And I'm sorry to hear that. It's left its mark, but you're doing so much great work

So I wanted to explore, like you said, that, um, like the government did one thing and said one thing Do you think that made people behave in a particular way? Yeah, they got they got fucked off. I got fucked off when I was in the house, and basically they were like, We're not gonna wear these masks anymore. We're not gonna listen because you don't know what you're on about

They didn't know what they were doing, and And let's face it, do they know what they're doing now? And did they know what they're doing with these covid jabs? No. Cos we still get covid. They don't know

And yet they're not got the balls to admit that. They don't know. They don't know

They don't put their hands up and say, Hey, you know what? We've got no idea. So please bear with us. It's more better to be honest than lead people down the garden path

Really important point. So I'm wondering about So there is lots of talk about a post pandemic world, um, or a world after covid. What does that feeling look like to you as a disabled person? Fuck up, Fuck up

And the reason why I say fuck up. And excuse me for all the swearing, but seriously, there is no gonna be post covid because covid is always gonna be around. So how how How you explain to me how they're gonna get living costs down

You explain to me how they're gonna get shopping down. You explain to me how they're gonna do all this. There's talks, but there's never any action

You see, there's more chatter and less chores in the government. Yeah, I I don't see it. I don't see it

That that that's the thing. Yeah, it's just like it. Then it might happen

But I do not see it post covid because covid will always be around. And it's gonna be as common as the flu jab. Yeah, or flu

Sorry. Yeah. And I suppose that if you're at risk of covid, you'll continue to be at risk of covid, right? Yes

What do you think about it? Oh, I've got lots of views, but this is I I think. All right. So I think that, um, lots of us have to find a different way of being in the world really hard

Um, and I think that this piece of work is really good, because it will maybe help share some of those stories. Um, w what do you think we have learned? Um, it have we learned anything from the Covid pandemic and lockdowns. Well, I'm not sure the government have, but I think we might have done one

Don't listen to the government because they don't know what they're doing. Although yes, it's good advice, but really No, it's not cos they're so confusing. Two

Don't take your days for granted Be thankful for what you've got because you never know Your days last cos At the end of the day it it you know the one thing that people are saying Oh, I can't do this. I can't do it, Dude, this has been my life for 11 years Now you're like me and you don't know what to do about it. You're basically a disabled person that is trapped in a house

You can't go out cos you're not allowed, doesn't feel very nice, does it? And I've heard this block off lots of people that covid really shone a light onto the lives of disabled people being trapped in their homes like is, are people trapped because of the lack of support or people like, um, whoops. Hello? Do Do you think that covid showed the world what disabled people experience every day or I do. I definitely do

Um I don't know how much they realise or if you know, anyone's learned from it. Um, I do hope they take valuable lessons away from this because I'm telling you, this is just yeah. If I mean, something's gotta change soon

Really? Um, yeah. I just hope they learn from it. But you need the trouble is, as people we can learn important lessons

It's the government. And that's what worries me because the government is the people at the top that can make the changes. Why do you think they've not learned from the experience of, uh, disabled people? Um, probably because they've been fed off the gold teaspoon and they don't know what it's like

And I think maybe see, they get into government, and then they say all these stories that they're gonna do, and then they don't do it. And maybe they just I think part of it is maybe they're afraid the go the government needs to live in our world. Quite true

My friend, my friend just said the government needs to live in our world, and she's She's right. None of them have really experienced what it is like to be a disabled person, which I would love to see. I would love to strap them to a wheelchair for one day

Makes you know every time they need it. Let them hold the you know, let them, you know, let them be hoisted, make sure somebody toilets them, make sure somebody changes their pad, make sure somebody wipes their arse and see how they feel. Because I'm telling you if that ain't gonna change someone

Yeah. And I've heard, like a lot of people say that this existed way before covid the lack of support, the lack of the only thing that's made it more prominent, I think is covid. But it was there

It was definitely there. It was empty promises. So if you So what would you tell the covid enquiry? So what messages would you like? The covid inquiry to hear

Don't give up as one of them because, yes, it's going to take a lot. But if you're doing this alone, you might not get very far. But because we're a team, we can move mountains

At the end of the day, the amount of people that make a difference you will make a difference. You may not feel like it's huge steps. It might be just small steps, but those small steps make bigger steps, and hopefully we can make that impact

You've already made an impact on my life. One year ago, I would not even be doing this. I would need to be doing, like, sitting in front of people and heading, you know, enquiries

No way I'd rather hide under the covers, so Yeah. So when you're talking to that covid enquiry, you've said that we can do this together. Yes

What do you think they need to hear about the particularly about the experiences of, uh, disabled people in relation to covid? I think they need to hear that it's not been easy that it's not an easy road, and I think they need to get more of the top people. And I'm not just talking about MP SI mean top top people. I'm even thinking about sort of like the Prime Minister here

I I don't I don't start from the bottom. Is like I head straight to the top. You do? Yeah, you do

Yeah. And And what do you think needs to change in the world. You want a list? Um, think people's behaviour

I think communication, I think discrimination. I think there's so many things that we could change. But there is one thing very beautiful about this world is that there are people out there that are to face that

Are they winning to face that battle? Yeah. And it's a scary battle. Yeah, because nobody wants to face it, do they? And is there anything else you would like to share about your experiences of getting through the covid pandemic? Um, I'm just thankful for everyone that supported me

Really? Um, cos I couldn't have done it, and I'm still going through it. Um cos even though it's past covid nothing's really changed for me. To be honest, I still have to be careful when I go out

Um, I still have to be careful around infections. I still Yeah, nothing's really changed for me, to be honest, which is a bit sad. It's a bit better than what it was, but yeah, it's I get to see more people face to face, um, which is nice, but I think the one good thing that has come out of covid is my work

My work My work is everything. And you're so fabulous at it as well. Well, I know I was gonna say I try

No, um, I'm just who I am. I That's me. I say it how it is

And yeah. Is there anything else you wanted to share with me before we come to an end? No, I'm good. Thanks

So let me stop the recording there and thank you, Donna..

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