Kate speaks to Isaac on behalf of her daughter who does not communicate verbally. Kate emphasises that Deaf and Disabled people are human beings first, but they were treated differently from other people during the COVID lockdowns when clinical decisions were made based on whether someone has a learning disability rather than on a health condition or age

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care professionals, together with the difficulties Deaf and Disabled people faced when support and services were withdrawn by local authorities.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

So can you tell me a little bit about yourself? OK, so I'm Kate, And, um I'm I live with my husband and my daughter in Cheshire. She, uh my daughter has learning disabilities and is autistic. I have two other Children, Um, who happen to both live in London. So a daughter who's married with, um one granddaughter and another one on the way

And my son, who lives with his girlfriend and a dog. Thanks for sharing that, Kate. So what's important to you in your life, Kate? Um, I think the most important thing is for the people I love to be happy

Um, And then beyond that, I I really care about the services that people receive or draw on. Um, so particularly because of my daughter, I'm interested in services for people with learning disabilities and autism. Um, I just think there's a lot that needs to be done better

Thanks. Kate. Um, and is there anything that you particularly like doing? Um, personally, like, what's your hobbies? What are you interested in doing? Um, I'm in two book groups, so that makes me read, which is really good

Um, but it's really hard to find time at home. So you'll often find me in coffee shops with a latte and a and a novel. Um, and I like to go swimming

Uh, just, um, sort of the main, I suppose the main exercise that I like doing, I like walking. Um, I like walking with my daughter, um, and meeting friends for coffee. I think they're the sort of main things I like

I like music, you know, going to live music, um, cinema stuff like that. Thanks, Kate. Any particular music in I like folk music, but but not all folk music, you know, So you know, when you say, um, you like folk music? People think you like all of it, but it's only very sort of specific bits, So I like people like Kate rs and, um, show of hands

And I quite like fisherman's friends. Um, so particular people I like a lot. Um, thank thanks

Kate. Um so thank you for sharing a bit about you and your life. Um, you started to talk about your daughter, and and so this, uh, project is about the experiences of deaf and disabled people, the experience of carers

Um and I was wondering, what impact did the covid pandemic and lockdowns have on your life or your loved one's life? So I I thought that it didn't have a huge impact in that as a family. We we were very lucky in that. Um, Maddie Dad know I are both retired

We've got pensions, so the money wasn't ever going to be a problem. We've got savings. Um, and we can be around all day to look after our daughter

So we were We were very fortunate in many ways. I think, um, our big worry was whether our our daughter got caught covid because as a baby, she was in intensive care, um, with bronchitis. So we were very worried that if she caught covid, she was likely to get it more severely than other people

And obviously, we were hearing that people with learning disabilities were having do not resuscitate notices put on on their the health records. Um, and I think it it felt clear that society didn't value the lives of people with learning disabilities. Um, as much as other people

So that was our Our big concern was to keep Maddie as safe as we could And so we stopped her p a s from coming to work. And normally she has three p a s who support her Monday to Friday, and we have a direct payment from from our council to employ them. So we stopped them coming

Um, and you know, when it became appropriate, we made sure they had the vaccine. Um, and it was just, I suppose that just that anxiety about about keeping her safe Um, I think then again, we didn't think there was an obvious impact on her in that she's a very happy person generally. But as time went on, what we noticed was, um, an increase in sort of behaviours that showed she was anxious or worried

So she can't tell us, um, how she's feeling. She doesn't use speech to communicate. So we have to rely on, um, sort of her gestures, facial expressions, her mood and so on

And as sort of the isolation continued, we had more of these behaviours of tidying things up is a big thing. So she would just find more things to tidy up around the house. Um, and then, um, Maddie's dad became quite seriously poorly, part way through, um, 2021

And so then he had to self isolate. You know, as, um what's the word? Um, the critically I can't think of the word Isaac. Critically vulnerable

Extremely vulnerable. Yeah, extremely critically vulnerable. So we had to be even more careful about, um, isolating as a family

And I certainly, at one point, I just got so bored with doing the same walk over and over again. We're you know, we're really lucky, because from our house, there's sort of probably three quite nice green spaces you can walk to, but when you do it every day, it's just mind numbingly depressing. Really? Um, so yeah, so we had to isolate for a lot a lot longer, and and then, um, you know, some services tried to open up again

So muddy sometimes goes to a drop in for people with learning disabilities in a town that's about 10 miles away. And they started doing some sessions online, and we tried that. And she was so happy to see her friends for about two minutes on on zoom

But, um, you know, she couldn't interact with them. She didn't understand what they were saying or what was going on. And so after two minutes, she she wasn't interested

And, um and so I and I was concerned. Then you know that some some services seemed to be saying they thought it would be OK to keep delivering stuff online and not in person. Um, and that did that did happen for quite a while

Luckily, that service is is open again. Now, Um, yeah. Can I take you back to a couple of points? So the fear and anxiety that you had to a mum around the d N D N r s, um, like, how do you think we got to that? How do you think we got to that place of like people learning just been given D

N. R s. That's a really tough question there

To me, there isn't an explanation other than people think that that their lives are worth less. You know their lives are cheaper than other people's, and that's quite well. It's very It's shocking, isn't it? It's shocking to think about, um and I know, I know

You know. Medics will have a hierarchy. I know there's a hierarchy of who to save in different situations

and who to prioritise mhm but to base those decisions on the fact that someone's got a learning disability rather than on a health issue or age or whatever just doesn't seem right. Um, so in a in a way, um, that's quite a salutary lesson, I think for parents that society doesn't value your your Children. Um, as much as other people

Was that a surprise to you? Um, deep down. Probably not. Um, you know, we've had all the, um the deaths of people with learning disabilities

We know people with learning disabilities are more likely to to die younger than other people. Um, so no, If somebody had given me a list of people I thought might be on the d n r list, I might have, um I might have identified that society would come up with people with learning disabilities. That's really sad

Really, really sad. Um, and then you talked about, like, kind of stopping the p. A s, uh, personal assistance, like, kind of coming to support Maddie

How did you come to those? Like decisions? Like what? What did you do on a daily basis to kind of organise getting through covid Um, well, the reason the way we reached the decisions was to look at the connections that p A s had, you know, sort of the exponential links into the community. So, you know, one p a has got four Children and, you know, quite a big family. Um, so obviously she was going to be quite a risk

Um, and we did. We talked it through with with the P A s, uh, and I wouldn't have let them come back to work without being vaccinated. Uh, and luckily, they all they've all agreed

So it was just thinking about those connections really beyond and and and the risks of of having those links Seems like you did a lot of thinking. And, like, did you get any outside support information advice like or did you just come up with, like, did you just do it yourself? Or how did you come to those? So they only they only help in thinking about it I got was from the GP. And, um, I can't remember at what point, though, but I I phoned and said, you know, Maddie was on a ventilator, and she had, um, asthma as a child following this really, uh, bad bout of illness when she was a baby

And I remember being told that she that her lungs would or would be affected for life. And, um and we can hear, you know, if you just walk next to her along the road, you can hear sometimes that her breathing's a bit laboured. And so I just chatted it through with with one of the GPS who didn't think that Maddie was, uh, a more significant risk than anyone else, so that was quite reassuring

Um, but then we had her her dad poorly. And, um, that was all back into lockdown. Really? Again

And did you get any support from that social services? Social care? No. Um, no. I mean, after what felt like a long time, we had emails about vaccinations for the P

A s. You know, I think councils went through a process of identifying who worked as p A s. Because the p a workforce was, um, pretty much unknown, I think before covid in terms of names and and numbers

And once they, um, found out who local p A s were, then we had letters about them getting vaccinated. But my council, even though they've known us for 30 years, did not ring us once to ask how we were. Um, they still don't know that, uh, Maddy's dad has been really poorly

And but it's not something I choose to share with them because I don't feel they're interested. Um, and that that experience has just made me realise it, so it sort of you feel it anyway. But it brought it home to me that they really don't care about us as individuals or as a family

We are a case or a number or a cost centre to the local council, and I will never, ever, um, trust them to have my daughter's best interests at heart. Now, you know, it just reinforced to me what that relationship is, and it's not how I'd like it to be. But that's how it is

That's how they've shown me. That's how it is. Thanks

Escape. It sounds really like that film sounds really sad And, like, thank you for sharing, because that obviously isn't an easiest space or place to be in. I wanted to ask you about like, um so you talked about Maddie's dad being poorly, Maddie and her own, like experiences

So we did. We talked about kind of like social care, but, you know, there were lots of things that happened in covid. Like, um, P p mask getting food and all that kind of things

How did, like, you know, did that make sense to Maddie? How did Maddie How was Maddie, Like, kind of thought about with any any of that. Yeah. Um, I I really thought Maddie would wouldn't wear a mask in a million years because she doesn't like, um, touch some touch, you know, she does

She doesn't like, she resists. And I don't know what it was or whether just seeing other people with masks on. She wore a mask

No problem. And, um, she was brilliant. Absolutely brilliant

Um, I used to go. It's funny because it's thinking back, you know, to how it was. Um, how you sort of your memory fades a bit, but I used to go shopping, like, late at night when there were a few people around

Um, I think I I started online shopping at one point. I must have done Yeah. And, um yeah, Matty

Matty was Well, she seemed fine. She seemed fine. It was just, uh, as it went on, we saw sort of an increase in these tidying type behaviours

So we talked about like, Maddie. Like, what about your you and Maddie's dad? Like, do you think it's had an impact on your well being? And, um, this might sound weird, but our generation I just think we've been really lucky because we've had nothing major in our lifetime, You know, we're born post Second World War. You know, there were a few sort of scary thoughts around with Cold War

Uh, maybe, um, but we've never had anything that's directly impacted us. Like like covid did. And it just makes me feel the world's a more fragile place

The society is a more fragile place than I thought it was. Um, so it's It's a feeling that yes, So anything could happen. Really? Um, anything could be around the corner

Whereas before I felt quite secure. I suppose so. There is lots of talk about a post pandemic world

What does this feeling look like to you as a family or to Maddie? What do you mean by post pandemic world? There's lots of people that talk about like a post pandemic world like Covid is over. The new normal, like society is back to Well, I I do think, um, I think there is a new normal. I do think the covid experience has changed

Um has changed us forever, particularly around doing stuff online. Um, and working from home. I mean, I I can remember having to really fight my corner to be able to job share

And, you know, now I think, you know, there's an expectation that people should be able to work from home. And unless it's a job that that you can't physically do that in, um, in some ways, I think that's opened the world up a lot more, you know, So you can get more people together more easily online, um, than getting getting together face to face. But there there's a risk of not not meeting face to face

And it still seems weird to me If, um, I get on a train and there's lots of people around, it's That's not the norm anymore for me. Um, mhm. So, yeah, I think I think things have changed

Do you think that we have learned anything from the Covid pandemic and the lockdowns as society. I'll tell you something good that that came out of it for for us was that our street that's now got a WhatsApp group, which, um, a couple of neighbours set up. And so there's now sort of a bit of a sense of community

Um, where I live that wasn't there before. And no, I think knowing that if something awful goes wrong again, I'm much more confident that that people will pull together and help each other. That's a real positive

That's come out of it. I think for me. Can I ask you, like, do you think Do you have any confidence that things such as like the state like so you talked about the community? But do do you think, do you feel more confident that social care or the state would be more supportive of or have learned anything? I I Well, for me, the jury is out still on that I mean, we learned that people could work around red tape, you know, they could suddenly work together

They could, you know, pull out all the stops to to do things if they really wanted to. I suspect we're slipping back into silos again. Um, you know, people guarding their separate pots of money? Um, so, yeah, I think I think the jury is out a bit on that, but I think they're sort of the civil servants and people who had to work through it

That experience will stay with them for the rest of their professional lives, if you like and, you know, is there to be harnessed again? If if the need arises. And I mean, I don't know, I'd like to think one of the things that kept coming out in, um in covid in sort of government guidelines and and stuff was for carers was, you know, to write, um, a backup plan for when things go wrong, have an emergency plan, you know, to support your family member. And I kept thinking, I can't do that

I still can't do that because there isn't anyone. It's It's like the system wants you to. Well, they want me to write a plan that says, If Maggie's dad and I or you know, run over by a bus or poorly, these are the people you can call and they'll they'll sort it out

We haven't got anybody. Um, and for me, that's a a massive gap. Still, that the system hasn't dealt with, Uh, and obviously, my fear would be that Maddie would get carted off by a social worker, um, into some awful place

So So we have to stay. Well, um, or at least can't both be ill at the same time. You talked about like, um, guidance

Like, did you find the information available during covid useful? Did Was it accessible? Was it ready? Like, was it Did you find it there when you needed it? Uh, it depends what you're looking for. I mean, the rules about you know where you could go and how many people you could mix with and whether it was indoors or outdoors and that were OK up to a point. But after a while, I just sort of lost the plot, Really? And we weren't mixing with anybody anyway, so, um yeah, I mean it

It was confusing. At times, I I do remember, um, trying to work out how many people you could see and where you could go and, um, and stuff like that. Um, but then I think the whole country was feeling its way

Really? Do you think the experience of deaf and disabled people were very different to other people's experiences? Um, yeah. I mean, I I think a lot of disabled people had it much, much tougher than than Maddie did. I mean, Maddie was at home with two loving parents

I mean, I think people particularly who were living on their own with maybe support from P. A s it was What did you do? Because you've got the p a s coming in with, you know, those connections with are the people so bringing risk into the house and how that, you know, even just getting hold of PPP and stuff, um was really hard for some people and maybe even making decisions on their own. Um, you know, we had two heads to to think about things

Um and you know, not maybe not even being able to get out to the shops on your on your own, especially if you were feeling poorly. Um, I think I think it was a lot harder for people who are disabled. Does that surprise you? No

No, I just think everything's harder, isn't it? Um, you know it. Still, we live in a society where it's hard for people to get around on public transport. Um, even to get into, like, a restaurant or a pub

Um, you know, I I keep saying to people when you look at things like, um, building design, I can't have somebody who uses a wheelchair come to my house for tea because they can't get in. Um, so yeah, everything's everything's much harder. Um, I mean, I Yeah, there was a couple I know

I don't know Well, but throughout covid, you know, Mum and her dad, they just seemed to be pushing their daughter in the wheelchair for miles and miles. Um, every day, I Yeah, I think it was pretty soul destroying. Just trying to get some fresh air and and get out of the house sounds really difficult

And, look, um, yeah, but I think Yeah, I I think we had it relatively easy. Um, yeah. So this piece of work is about, like, the experiences of people through the covid pandemic and lockdowns, and it's feeding into the inquiry

So what? The covid inquiry. Sorry. Um, what would you like the inquiry to hear about the experiences of deaf and disabled people

Really? Just that definitely disabled people are human beings first. And as a society, we should care about about everybody. Um, and we should look out for those people who maybe need a bit more support than we do ourselves

I That's the key thing, I think because I think if if if if we saw people as human beings, you wouldn't let people suffer or be on their own, would you? Um I just think it's seeing seeing people as as people. Is there anything else you'd like to share with me about your experiences? Um, I don't think so. Isaac, I think we've covered most things

Any questions for me? No. I'm gonna stop the recording there. OK, um, if that's OK


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