Sally talks to Isaac about what her autistic son experienced during the COVID lockdowns. In some instances, local authorities were very controlling and there was no flexibility for using direct payments. With other aspects, such as providing information or occupational therapy, statutory services did nothing, which meant families had to work out for themselves how to support and protect their loved ones.

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social care professionals, together with the difficulties Deaf and Disabled people faced when support and services were withdrawn by local authorities.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 experiences are speaking on behalf of people they care for who do not communicate verbally.

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social care professionals, together with the difficulties Deaf and Disabled people faced when support and services were withdrawn by local authorities.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 experiences are speaking on behalf of people they care for who do not communicate verbally.

old. So could you tell me a little bit about yourself? Yeah, I'm Sally and I live in the lake District. I live with my partner, Alan now husband and his daughter Hannah. And we have, um, a lovely grandson called Isaac, who is going to be here very soon

And my son Alex lives at the bottom of my garden in a lovely lodge. Thanks, Sally. Sally, what's important to you? What make what makes you you what's important to you? I would say the most important thing for me is peace of mind

I I would say that when something's niggling at me and my peace of mind is gone, then everything else around me fails. So I have to have really secure peace of mind, which is is quite a difficult thing to achieve often. Sorry to hear that, Sally

I'm like, Oh, so we were just having a conversation and I wanted to explore with you. So what impact is COVID-19 or the pandemic and the lockdown to have on your life and you know, your family's life. So I would say that initially, the lockdowns had a massive impact because we never saw it coming to such a huge extent

So it was something that was so alien that suddenly you weren't allowed to go outside. You weren't allowed to mix with your family. You weren't allowed to go shopping

Everything was just so alien and worrying that for me, I began to do things to try and get peace of mind. Because I've just explained that peace of mind is is my ultimate goal. So I did start to do some strange things

Um, like drinking cider vinegar. Um, because I thought that might keep me healthy and keep covid away. Um, I stayed up all night

I had panic attacks. Um, I was also supporting my son who, um, who has autism and a learning disability. I was helping him to understand what what was happening

However, as we got into it, I quite I'll be honest. I quite enjoyed that. Not having to rush around not having to go out

I kind of settled into it after about, you know, after a few months, I settled into it and began to quite enjoy that that solitude and not having to rush to the shops and not having to rush to work. Um So it was kind of roller. Coaster was lockdown and covid because then work began to get really stressful

So that had an impact. Because then you began to not see anybody face to face. And that has an impact on your well-being, Um, as well

So it was a real roller coaster journey. Thanks, Sally. So this so we are exploring the impact that COVID-19 the pandemic lockdowns had on the lives of deaf and disabled people

So what impact did it have on you as a family with lots of people living with disabilities? It it honestly, it had a massive impact, I would say for two reasons, and they're different reasons. So for Hannah, Hannah was given an early discharge from hospital at lockdown. She had just broken her leg, which meant that she came home

And then we were very much left to our own devices by physio o. T. Because they couldn't come into the house

They were busy doing other things. But that meant that Hannah left with that was left without that real vital, um, physiotherapy in her life to help her to be mobile. And all of her appointments, of course, were cancelled

So actually, there's been a 2.5 year delay. She's now catching up with appointments and getting the right O

T. And see having all her appointments. And actually, she's now beginning to walk again because of that

But she spent 2.5 years being not able to walk when if it had been a normal year or two years, she'd have had physio and actually should have started her mobility, um, progression 2.5 years ago so that physically has had an impact on Hannah for Alex

Alex kind of rotted away in in in an enjoyable, rotting away in many, many respects because as an autistic person doesn't particularly like going out. So it was more of a case of when lockdown was eased. We then had to start getting him out again, and that has been a real that has been so difficult

He is so determined not to reengage with anything. So everything is a battle to get him out. And, you know, obviously, without if covid hasn't hadn't happened, we wouldn't have taken that massive step backwards

Um, so yeah, it's had the the longevity that the the Yeah, the outcome of lockdown and covid. It has been quite difficult to to get back to normal. Do you feel like as a family, you got the right support and the right information? You know, like, how did you make sense of getting through? Well, we didn't get any particular support or information apart from our Selves

We had to find out stuff. You know, I proactively found out things how you know. However, there Yeah, there wasn't any support

I mean, I'll, I'll give you an example. So, for example, um, direct payments. So we have a direct payment for care and through covid, a lot of you know, our p A s couldn't come in, but there was no flexibility allowed on how to use those direct payments

We were just told No, they had to go on care and they had to be go on on people that didn't live in the family. I mean, we could have sourced p a s within the family, and it would have been much easier, but no, that wasn't allowed. So it was bonkers, in my opinion that that support wasn't flexible and that there wasn't that information coming through

I don't think either either my partner, Alan, or I got a a communication in within lockdown to see how we were. Um, yeah, we were just left to our own devices within the constraints of you're left to your own devices. But you have to abide by our rules

Still talking about rules, like, how does somebody make sense of the rules? Like, how did you make sense of the rules? And how does someone like Alex make sense of the rules? For me, making sense of all of the rules was a little was I used to have to go online, uh, you know, and try and work them all out because the rules would change from day to day. My my strategy was with Alex was that he hasn't really got anywhere that he can get news from. So we worked it out that I would tell him if there was anything happening

Um, but that didn't kind of work because he did pick things up as you do. You pick things up, and then if you don't talk about them, it makes it a deep seated worry. So he would often have meltdowns because he'd heard a bit of information, but he'd made sense of it in his own way

And when he came to me and I was like, No, those rules. No, you've misunderstood those rules. Um, so it was Yeah

I think for everyone, it was difficult. And actually, we were in the privileged position that we've got a garden that we can go out into, Um, but that had issues in itself, because we've actually got a footpath that goes through our garden. So, Alex, seeing people walking through our garden used to go hysterical, absolutely wanted to tell them all off because he didn't understand the rules that you were allowed to go out for a walk

Um, so, yeah, there were lots of conflicts and and, yeah, lots of misinformation and information that we had to find out. Do you think you know, you said that like you didn't get any kind of support from services. And actually, the things that you've done weren't really supported

Do you think this is a longstanding problem for people with disabilities or Oh, absolutely. Go. Absolutely

People that, um, have additional support needs are disabled. They're always done too. They're never done with, You know that

And that's that's a real shame, because the opportunities to work with people who have a disability to make people's lives really better is missed because people are too busy holding on to their power and it's about power sharing. And so many times I've met people who are in services, and they they really want to maintain the power and actually quite frightened of that sharing of power without them understanding that when you share power, the answers to problems answers to issues is so much easier if you're sharing with somebody and they don't really understand that don't really want to. I don't think there are very few people out there that I've met that genuinely listen genuinely want to make things better for the individual

Why do you think they don't wanna do that? Because they're frightened. They they don't understand the basics of things like direct payments. You know, when my mum was ill and I asked for a direct payment, I was just told Oh, no, those aren't for those aren't for older people because the social worker that came out didn't really understand them didn't really want to understand them

and felt that that might be a threat for her job. I think so. You've talked about, like, direct payments, social workers

So, like, Oh, you as a family supporting people with additional support needs. Do you? Did you do you? Do you have a trusting relationship with the state? Like, do you feel like you like the you would go to social services for help? Like I'm just exploring that. Yeah

Would I I would never go to social services for help. A Because who would I talk to? We don't have social workers now, so we've always had previously, you know, Mr X, Mrs. X is your social worker

That isn't the case now. So if we had a problem or if I had an issue or a question, I have to ring a generic number, and then it's sent to a duty social worker who I don't know, doesn't know me. Doesn't know Alex Hannah doesn't know a family situation

We then would have to wait to be allocated a social worker. Well, there are quite there's not a great amount in Cumbria. Um, and then we might be given one, and we'd have to tell our story all over again, and actually, it's not worth it

It's just not worth it. It might take three months, and then they might say, Right, we'll give you a total review. Well, I don't want a total review

I just wanna know if I can put my P A s, um, wages up by two pence an hour. But it all everything is such a drama with with social care. Well, with any care, what impact does that have on your well-being? Oh, it it it's stressful because, you know, you know, there are some times when you've got no choice, you've got to get in contact or they're hounding you for something and it completely you know, it completely brings you to your knees sometimes

And that's not helpful, because, I mean, sometimes you're hounded for information that they see as being important. But we don't. I wanted to now, like, invite you to go back to your own journey with covid

So how did you like when did your journey with the pandemic start? What did they look and feel like? How have you managed, like just getting through as a family like those daily things and then I wanted to ask you to share with me the work that you've done. Because I know that we've spoken about this. So it's important, uh, going back to, you know, me and my colleague, um, saw this lockdown coming, saw the pandemic coming

And actually, the PE other people we worked with didn't see it coming. So when we said we we shared with them the way that we felt we said it probably wasn't gonna be safe to have a big meeting. And could we look at doing things differently? We were kind of ridiculed

We were made to feel, um, that we were being dramatic, that we were being oversensitive. And as it happens, all of the things that we were sharing with people and worrying about and saying, Oh, I'm not happened. And the big meeting that that was going to happen didn't happen in exactly the way we said it wasn't going to happen

And then, of course, then they did have to look at alternatives for communication, which was zoomed like we suggested. Um, so the first sort of few few weeks was barmy because people were all drumming to their own beats but they weren't quite matching up. Um, then during the first few months of covid, I mean, I remember thinking, Oh, wow

I don't have to even get out of my pyjamas. I'm just gonna stay in my pyjamas for the Oh, it was wonderful. And I loved it for the first few days

Oh, but then work did hit, and we were really pressurised through work. And actually, we did a lot of good work. You know, we worked on the direct payment guidance

We did a lot of work with the all party parliamentary group for adult social care. The working group, um, to really get those lived experience messages into the ears of the politicians. Um, and we worked really, really hard were were we? I won't won't say thanked for it because you don't do it for thanks, but it's it's nice to feel valued for it

And I would say that often we didn't feel particularly valued for the hours and hours and hours that we were putting in to try and make things better for people with with disabilities. Um, and it wasn't We were valued by the people who who, you know, were were reading the stuff, Um, all the people that had a disability, but it was Yeah, it was difficult. It was difficult

It was difficult. Um, and I did resort to doing things like painting and creating and crafting all night to try and take my mind off things that were happening. But I did, in fact, end up almost, I would say, having a meltdown

You know, it might have been called AAA nervous breakdown, but it was it was that implosion for about two weeks because it was just all consuming. And you talked about getting those voices of disabled people into those spaces. So what were people telling you at that time about their experiences of the covid pandemic? I don't know

We all sung from the same song sheet, which, which was that we were working with councils that were still very controlling that weren't giving us information that didn't want to contact us. They were using covid as an excuse for absolutely everything. Um, they're still using covid as an excuse for absolutely everything

Um, and I would say that that general in general I'm not gonna speak for everyone, but from what I've heard, and who who I've spoken to people with disabilities were very, very far down the pecking order. Um, yeah. So share with me some of those fears that people wanted you to tell politicians and policy makers

I would say one of the biggest things was around flexibility of how they can use their either continuing health care funding or their social care funding because they're so prescribed. People weren't being able to be supported properly because they weren't being flexible. And people didn't know what their council was saying

Yes, there were. There was guidance came out which, you know, you and I helped to to develop. But it was guidance, and councils didn't often didn't even share those guidance with the people we lived that were, they were actually having a direct payment

So it was it. It's the PE. People have just been saying how badly supported they felt

Is this a surprise to you? Not one little bit? No. Because the other thing is that where people did feel supportive, they had a really good relationship with their social worker. They'd had their social worker for a long time

They'd built up trust they'd built up a a really good relationship. And actually those people were much better supported, much better supported, um, in areas that had really good flexible, um, rules and regulations and guidance around how you can use a direct payment. Those people were much better supported during Covid because they they were able to to to move those G gate posts within the rules within that flexibility, which is not surprising

Why do you think people don't move the rules? Like what? What is it stopping people? Just I think it's We've talked about it. I think it's power. No, you can't do that

I think it's fear. I think it's them not knowing. I think if if I asked my social worker, um, the rules around, you know, tell me the rules around the care act and what the care act says about, you know, direct payments, self direct support, they wouldn't have a clue

Yeah, so I meant, like, Why don't disabled people? Why why do you think what prevents disabled people do like what stops people doing what they need to do? Yeah. Fear of being of fear of being cross examined and then having their direct payment taken away because you know, your funding for is is about your life, you know? And if you can't do anything without your funding, your care funding and you're worried that care funding is going to be taken away, you you play by the rules. So are there other things that were coming out at that time? And some people have talked about the d n r

Some people talked about P PE. Other people have talked about people being discharged into care settings covid positive. Like, so are these things that came out in the conversations you had with disabled people, particularly P PE? Yeah

Um, I had no idea where to get p PE from, You know, you'd go on Amazon sold out, sold out, sold out. And I found out purely by chance that all I had to do was ring my local council, tell them get through to the the P PE line covid p PE line, and put in an order. Now, I could have done that from day one

Nobody told me I could do that. I found out purely by chance, sort of three quarters of the way through covid that made a huge difference because I wasn't then fighting to get p PE and paying extortionate prices for for things. Um, to keep p a safe so and then not being able to to buy things with your direct payment because of the inflexibility

So it's a bit of a vicious circle. Um, So the p PE was was an issue to begin with, and that wouldn't wouldn't have been an issue if there'd been information that would have been sorted. Um, D n r is completely different matter

You know, we were terrified because Hannah has a quite severe learning disability and physical disability. We were terrified that that was gonna happen to Hannah, and and we were determined to keep her out of hospital, no matter what. Because we felt so concerned that we would stay with her and we would fight AD n r it it was I think that was a real serious issue that came out and people, I I'm I'm assuming, um, from what I've heard, people died because of it

Healthy people died because of the d. N R. Why do you think we got to a place of like Did it surprise you that people like Hannah would would get AD NRW

Why do you think that that was? I think it's because they don't value. They don't value people who are seen to have such a profound learning disability. You know, when Hannah broke her leg, the first doctor we saw wasn't even going to mend it

Oh, she's in a wheelchair. She won't need her legs. Oh, I wouldn't

I I think we'll just leave it because they didn't value. They didn't say. Could she walk before? Well, yes, she could walk

We wanted to get her. They didn't ask the questions. They didn't value her

And that is you know, so so that didn't surprise me at all. I almost felt, Oh, this is the government's way of getting rid of a few people that that you know, they might see us as draining the system. Which, of course they're not

They're adding to the system, you know, we've got to have diversity. Hannah is such a lovely person. You know, she adds to our to to, to our community

Did you really think because I've heard this, like from other people that share their story, they believed that some of the ways of managing covid was actually, you know, like what you just said is just shocking them off. Yeah, Yeah, I did. Absolutely

I did think that Well, I think that they had. They thought they were going to have so much on their plate, and they were gonna have to pick the people that they had to save. And they would rather save a 20 year old without a learning disability than a 20 year old with a learning disability

That's how I saw it. So if they put AD n r on the the person with a learning disability, who was 20 then that that wouldn't be a problem? Well, it obviously wasn't for them. They did it

That's the only way I can justify that. They were doing that. How does it make you feel? Well, at the time, I I just could not believe it

It was I I Yeah, I just couldn't believe it. And I would have fought tooth and nail for that not to happen to Alex. Uh, and to Hannah, You know, I worried about Alex as well, you know, because he has autism and a learning disability

You know, if he got covid. Would they do that to him as well? It was. It was a terrible, terrible worry and so, so wrong, so wrong on so many levels

But not a surprise to you. No, no, no, not because I I've I've never felt that we particularly value the diversity that people with a disability can bring. You know, I think that that, for example, Alex's disability in a mainstream school really helped the other kids to understand autism, learning disability

Understand that that everybody is the same. Um, And he is He bought so much to to his peers at school, and that's forgotten that that's forgotten. Thanks, Sally, for taking me on this really important journey

So when you were doing all of this work and you were managing kind of supporting your loved ones, um, you know, that was a moment in time. And now there's lots of talk about this post pandemic world. Um, what does that feeling look like to Alex Hannah, you like as a family? One of the biggest issues for us has been that we can't get hold of testing

We can't get a hold of te Well, we can buy testing but it's been quite difficult to get a hold of of test kits. Alex is obsessed about testing. He gets his mental health really deteriorates when he can't test, so that's been difficult

Luckily, I have managed to get hold of some, and so we've been able to to test him regularly when it's been on his mind, Um, having the boosters and having the, um, injections. Funny, because I couldn't wait for them to start with. Then I got

I started getting bombarded with all this anti vax stuff, and unfortunately, my best friend is a very, very big anti-vaxxer, and that sort of thing unnerved me. It really unnerved me that I was being bombarded by all of the things that were gonna happen to me if I had the vaccination. I have health anxiety as it is, and so that is really difficult

Um, people's even even going out and people's perception. Should I wear a mask? Shouldn't I wear a mask? Do you know, Do I have to wear a mask? Do I do I go into the doctor's surgery? I wear a mask and they say, Oh, you don't actually have to wear a mask now. OK, I'll take it off

But is that the right thing? Oh, gosh, it's, you know, politic politically. Correctness is is really difficult at the moment because there are people that won't talk to you if you haven't got a mask on, um and there are others that think you bar me if you've got one on. So it's all of this conflicting, and I would I all the way through, I've said, You do your thing, I'll do my thing

Don't judge me for doing my thing and I won't judge you for doing your thing. But not everyone's a bit like that. And this post pandemic world for Hannah in terms of being able to do the things that she once did, is that still, she's so much happier now

She she goes to a day service, which, of course, was closed for ages, very happy to go back to her day service and literally only in the last month. I would say she was she went back, but because she was part of a family. Other people that attended the day service didn't go back because they were in supported living, and I don't There was a difference, and I don't know what that difference was

But it's only been in the last month or so that everyone's come back together. Oh, and she loves it. She loves the day service college, she calls it, So she's much happier

Hannah's got such a profound learning disability. She doesn't know she doesn't process too much about the pandemic. But she did know that she wasn't going to college

And so she's really happy that she's back, Um, doing the things that that she loves and being with the people that she loves as well. So, do you think the restrictions were were? Did you think the way that lockdown and the restrictions were organised had disabled people and then it at the the centre of it at their mind, you know? Was it mindful to their needs? I don't think it was. I don't think it disabled People were particularly thought about

It was blanket, wasn't it? I don't think anybody otherwise we'd have had a phone call. I don't I was just blanket, you know, one for all and all for one. Um, so I don't think that they particularly took disabled people into account

Um I was surprised. I mean, when our we did get a a two food parcels. Um, but that wasn't because Hannah and Alex were so disabled

It was because my husband has an immune immuno deficiency. Um, and he takes tablets that impinge on his immunity. Um, so we did get a couple of those

And one thing that was good. Is that because alan has this condition, we were put on, like, a fast track, um, to, um, priority shopping. Now, that was good

That was good, because that did mean that we could we could organise food. Um, so that was great, but that wasn't particularly around disabled people. That was about clinically a clinical issue that actually, you know, it was great for Hannah and Alan

Alex. And actually, I think they should have been the priority, not Alan. And he agrees as well

Interesting that the people most at risk in, in your view, didn't get that help. And then Alan did. Yeah, Yeah, it was It was It was bonkers

It was absolutely bonkers. Um, and and I'm not saying we weren't grateful for it because we really were because it was, you know, the first few weeks were Oh, my, You know, you had all this in your head. We're never gonna be able to go shopping again

And so it did help having those food parcels. Um, What what about this post pandemic world? For Alex, it's It's been a lot more difficult for Alex, certainly than Hannah. Um, because that Hannah has it lacks of capacity and and lacks that Alex doesn't

Um and his mental health is has been terrible. It's been for lots of reasons, but his his mental health is is pretty bad. And it's been impacted by the war

So having the pandemic post pandemic come out war, Um, his mind is just blown. And so he spends a lot of time in deep mental depression, and that's no good for anyone. Because as a mom, Dad, you know somebody that loves somebody to death Almost

Um, if your child isn't happy, then you're not happy. And so again, that has a knock-on effect. Um, and Alex is so unhappy that obviously that has an impact on me because I love him

Although it's sometimes very difficult to love. What about your well-being? Um, it's It's a roller coaster. It's an absolute roller coaster

Uh, you know, last yesterday, we had a really good day. Last night, we had a terrible night. Today we're having a terrible day

Um, and my my well being is totally dictated to me by my son. And it is It's a terrible thing to say, and I need to think of ways for it not to happen. And by you know, my well being

If Hannah's ill, then it has a direct impact on my well-being. I I just take on everybody's misery, I think, um, but yeah. And so yeah, it it it has covid has made life much more difficult

And there were times when that it could have been eased by information, support and advice from statutory services, you know, and it just didn't happen, just didn't happen. And the only reason that I knew things in the end was because I went out there and found them because of my work with, I think no clap person in the National co-production Advisory group. You know, uh, but not everyone else was in that privileged position

So if I think I didn't get information, advice and support, goodness knows what? Joe bloggs down the road was like, So yeah, it's It's been a difficult time. Yeah. Yeah, it really has

And so what? What can we learn from the covid pandemic and lockdown? What has society learned? What have we learned? Um, I think I think we've learned that. Um well, you know it. There's there's there's two ways of looking at it

We've learned that we don't really, um, value disabled people because we're just gonna put d N r s on them. So I think that that needs to be really Well, it is being looked at. It is being thrashed around by various, um, disability groups

Um, I think that we've learned to value hope. I hope we've learned to value people like carers and the NHS. We all came out and clacked for carers, didn't we? Um, but then we didn't really do much for them

Um, we really went out, and we thanked our key workers and our NHS. But now are they being recognised for all of the work they did during the pandemic? I don't know. Um, we're in a period of austerity where life is in unequal

You know, the the balance of, you know, the balance of of money should be going to the people that work hardest. And it doesn't in in the world. Um, but that's a bit of a of a Yeah

Crazy answer, maybe. No, it it definitely is a Yeah. Um what would you like? The inquiry? The covid pandemic inquiry

To hear about the experience of deaf and disabled people. I would really like to hear them working on values value. People who are deaf and disabled

Don't just push them to one side, understand that these people, you know, you just have to look at the Paralympics to know that the deaf and disabled people have a lot to give to this country. Um, and it's it's crazy to devalue these people because, yeah, I also think that they need to really look at the culture around the perception of disabled people within services and get them to really take on board, working with not doing four, really understanding that if you work with dis disabled groups or, you know, groups of people, individuals that have a disability, you'll get the answers quicker. It's much better way of working, so I hope they learn that disabled people should be valued, that the best way to make this world better is to work with people

Copro produce things with people, whether it be disabled people or carers. Or, you know, it's always better if you look at if you look at businesses, businesses like Co-ops and they work with other people to make their what they offer better and it should be the same in in statutory services, just work work with people. Simple

Is there anything you would like else you'd like to add about your experiences during Covid? Um, I think getting across to people that it was a real roller coaster road and that the roller coaster could have been flattened out with not a lot of support, but just, you know, if somebody had rung me, if my so if a social worker had rung me and just said, Hi. Hi, Sally, how are you doing? That's not a lot, is it? But that would have made that would have made a difference to me. That would have made a big difference

And I don't think that we're out of the woods yet, are we? I mean, I think that that we're being told this is going to be a long standing thing and they've got to learn from it. And the best way isn't isn't just hearing back from one individual. It is hearing from a group of people with the lived experience, because if you get more voices together, then you get more power and it's got It's got to be

It's got to be power to the people sharing, um, sharing what they know and what their lived experience is to make things change. What would that change be? Oh, make Just listen, listen more, but actively. Listen, you know often I've been talking to people that have asked me questions, and you can see that they're looking over my shoulder for the next person to ask a question to and to go on to

So that means they're not really listening to me. They're not really wanting to hear what I've got to say, so they've got to learn to really listen, and then when they've listened, they need to action it because I think you'll find that most people are saying the same thing. It's and it it's just not rocket science

Is it just not rocket science. Thanks, Sally. I haven't got any further questions

Have you got any for me? Um, yeah. Does that kind of mirror your experience? Um, yeah, I think I think if I'm honest, I think we're still emotionally, uh, processing it. And I remember the saga with the P PE, the being on calls with you

And we were being told that people with covid being sent into care homes discharged back into care homes and we would look at each other and we would be frustrated. I remember the impact on my mental health. I remember the impact on your vision and your mental health and with from never using zoom being on zoom from eight o'clock in the morning to 10 o'clock at night

I remember the support groups that we set up. I I just remember so much of the experience and I'm left always with the sense if I'm honest, Um, how adversarial this the state and social care is in the lives of disabled people. How Even when we turned up, people rolled their eyes when we shared experiences of people dying people not getting p PE, you know, And not everyone got food

Not everyone got p PE, and then it just that if I'm honest that I I have a great sense of, like, how comes we got through Other people didn't like guilt. You know, we we felt you do feel guilty. Yeah, Yeah

I used to feel guilty when I went went out for a walk because I've just maybe spoken to someone on Zoom. I've been allowed to go out, but on on a good thing I had I got through it because of other people, like, you know, I got through it because of you. And I hope I helped you get you Get through it

I got through it for the love that I found in people that I never thought I would, you know, find the love the love for and with, um So I think the experience has bonded people and and those things that we all did to stay connected or the things that we learned about ourselves. I really liked doing, um, Sally's Aunt Sally's words of wisdom. I loved doing that, you know, for a little while that that kept me going

I had a purpose, you know? And they were such fun. You know, Camaras was such fun. Um, to be part of, you know, the spoon rooms and, you know, making my I still got my little spoon here, you know, and And that that when I see that, it brings me joy

Um, so there were there were real islets of of Yeah, um, some bits. Some bits were really good that when it came to forming rela long lasting relationships. Yeah, definitely

Thanks, homie. I I haven't got anything else. Are you happy for me to stop recording? I'm very happy


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