Isaac speaks to Kath about how many Deaf and Disabled people felt excluded and shut away during the COVID lockdowns. Isaac considers that some government decisions led to many Deaf and Disabled people dying when they were discharged from hospitals into care homes. As a strong co-production advocate, Isaac explains why we were not all in it together, because Deaf and Disabled people were frequently left without support.

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care professionals, together with the difficulties Deaf and Disabled people faced when support and services were withdrawn by local authorities.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

That's great. OK, can you tell me a little bit about yourself? Hi. So I'm Isaac. I live in East London, have four dogs

Um, favourite pastime is drinking gin. Um, live with my husband. I love living in London

Someone that lives with a number of, uh, long term health, uh, challenges. And I'm passionate about, um, kind of coproduction lived experience. So that's really people having a voice in the various systems that they use

Thank you. So could you tell me what impacts did the COVID-19 pandemic and lockdowns have upon you and your your life as a a deaf or disabled person? Wow. What a big, um question

So first of all, um, I should I should probably start at the beginning. So at the beginning of lock. So it all started with I was in Manchester with my friend Sally at a meeting, and then everybody started talking about this covid and I was like, this don't sound good

Really Does not sound good. So I went into lockdown about three or four weeks before the whole of the country did. And, um, what was really astonishing at that time is a lot of the organisations I were working for were disabled people's organisations or big organisations around personalization and they made us feel so shit that we were saying that this thing was happening and we wouldn't go to meetings

Um and I just knew that something really big was gonna happen because everyone was talking about it. And I also knew that, um, I needed to look after myself and I remember getting this phone call from my HIV consultant saying Isaac, you really need to just, like, stay at home and look after yourself. This, um COVID-19 is coming, but I'd already been, like, a week or two weeks in not seeing everybody, so I thought, absolutely

My life is over because you can't get out and work. Um, and I didn't really know anything about digital or zoom or anything like that, but I was really angry that people made me feel in the early days that I was being neurotic, hysterical, unreasonable to suggest that you would not bring lots of disabled people to an event and they really was thinking about Oh, if we cancel this meeting or this, um conference was I was going to then we'd lose all this money? Not about. You know what? If you bring people together, they can get sick and potentially die

Then all of the stuff started coming out from Europe, and I knew that we were in for a long, long haul and it was gonna be really bad. So, um, just was like, I felt like, Oh, my God. I'd been hitting over the head with a glass bottle and just didn't know what was coming or going

And in the early days, like we all just made things up, there was a lack of information, Um, particularly for people like myself. I remember calling, um, social care, social services, saying, you know what? This Covid thing, you know, we come out, what do we do? And I had this social work on the end of the phone saying, Have you got covid? I said, no, I haven't got covid. Well, um, we can't help you, and she just put the phone down on me, and I just thought, I can't imagine what people have taken to get to that point to make that call

It was awful, and I really struggled with understanding what I needed to do like I'm disabled. I've got carers that come on a daily basis. How do you stay safe? This covid

Um And when I said it's covid because it wasn't a thing, you know, it was in my head. It was like it was invisible, you know, honestly felt each time that I saw of anybody that they could kill me. So I was, like, so scared of people so angry inside because I felt like, um, nobody gave me really sensible or useful information

I couldn't get p PE to me like I was all trying to order p p on the Internet and, like, couldn't get it. Um, And then, um, they put, like, the country into lockdown. Still, at this time, You know, I'm known to so many services

No, no contact from these services at all. Um, which is just heartbreaking. Like I just felt like they didn't care

And in my head, and it sounds really terrible. I thought, Oh, my God. This is like, um, this is how the government is going to save money because it's gonna kill all the disabled people

It's gonna kill all the older people. And then it was just my biggest nightmare come true. Um, so I couldn't get P PE, then couldn't get shopping and stuff because, like, there was, like, queues and all of this stuff

And I remember like, um, my husband, um he wasn't my husband at the time. Uh, so being at home with my partner, the idea that two people that live together one person would stay at home and the other person could go out and work and, like, how was that going to work? So he had no protections around. He had to still go to work

I had to stay at home. Um, and like, it didn't make any sense. Because, actually, if he's going out to work, it defeats me staying at home like it didn't really any of it make any sense? Then we, um and I say we like, we started to get more aware of, like, the the doom and gloom on the T TV

So it was like all of these people dying. Um, all of these terrible things that were just happening and the government was not telling people what to do. Everything was changing

Um, there were government officials doing the opposite to what they were telling people to do. We got letters to say that you need to go into, like, a shielding group. Um, which was pretty late on

And, you know, like the letter was just go Goggled group. You know, you need to do this. You need to do to do, like, oh, live separately from the people you live with

You should use the bathrooms and, like, I don't live in a mansion with separate bathrooms. And I you know, I'm very dependent on other people. Um, So it was just this sense of, like, hopelessness, not knowing what to do, lack of information

Then I started to get, um, involved locally with mutual aid, and I just was like, Oh, wow, like all of these people that are really doing a good thing. Then I realised I was the one that was taking all the phone calls and answering the emails, realised that My God, do you know what Shit. I'm all right

I've got the internet. I've just had the baptism of fire learning zoom and teams and all that sort of stuff, and I've got resource and money around me. But there are people out there in my community with nothing, no food, like

And I had a friend, um, called bet who would go out shopping for me and bring the food. And like so once a week, she'd go off and do the shopping, and she got, like, a bit of hassle at times because she would go into the priority bit for, like, priority people. Um, everyone was hoarding toilet rolls past them and all that sort of stuff, and it just felt like, Oh, my God, if you were unable to to mobilise or do stuff, you'd be absolutely, um, disadvantaged

We were dependent on people doing things for us because we made a decision that might part of a stay home to minimise the risk. Um, then it felt like, really unfair as well, because there were all the people on benefits, right that they gave a £20 uplift to, and then all of a sudden, they're creating this money for people. So, like, oh, we're gonna furlough people

I mean, we're gonna, um, give these grants to the self-employed. I know lots of people didn't get help, but it just felt the people that needed most of the help. Like disabled people like older people didn't get it

Like the people that are productive and, um, or so called productive in society, all the efforts were made to help them. There was much more emphasis on keeping people employed and e economy than it wasn't saving people's lives. And like the work I do, I thought, it's over

I'm never gonna work again because I was never nine, but I was more busy than ever. So I was doing the mutual aid was also having mental health challenges. Um, at the same time, because I was in shock and every grief and it, you know, like you lost the world, lost everything

People scared me. The post scared me. Um, I remember like when we put a post in bags for it, um, and didn't see n n couldn't get p

PE didn't know what to do with the p A. But I was involved with lots of groups that then were coming together to organise, and I worked with, um, a big organisation. I won't say who they are, but to advise the government on the guidance for those that were shielding advice for the, uh, people that were self directed knowing care and support

We had carers and P. A s coming in, and it was all great to be involved. But the information was too late, too little focused on the wrong stuff

And I think a lot of people made decisions disabled people based on historical relationships with their social care. So we all have terrible relationships, social care, so we don't trust social care. So when we're getting information or no information, we're thinking, Oh, there's nothing new, you know, we'll make it

We've had to make it up as we go along. When the government was leasing information for me and everyone I knew that was disabled, we didn't trust it. We did not trust what the government was saying

Um, and the shielding thing was like, we're gonna put the most valuable in our society. We're gonna call them most vulnerable. We're gonna lock them in the houses because they are the problem

It's not that we could, uh, copro produce or have conversations to understand how we could meet everyone's needs in the community. Um, knowing that we didn't protect people's jobs that had disabilities and we had insecure job arrangements. Our lives are dependent on other people

Um, not only our own. So if you don't protect the rights and jobs of our carers and our loved ones, then you're not looking after us. Locking us away did not stop covid coming into our lives

Um, and I was doing a lot of stuff with the all parliamentary group and then social care, and they made decisions that it's just heartbreaking. They made decisions to send people with covid into care homes. Just charge them back into care homes

And I in my head, I'm thinking, Yeah, they're gonna kill us. They want to kill us. I mean, so many people that I know and we was in contact really believed it was a an attempt at reducing the level of resource needed to support disabled people to live good lives

Um, and it was deliberate because that that why would you send covid positive people into care homes? Don't know. But they did. Why would you then, um, for instance now, like I thought, I ain't going to hospital

I'm never going. If they if I get covid, I'm gonna stay at home. I will die at home

because at least there I'll get treatment and respect. I remember writing like lists of things that I wanted people to know and do and have about me. Um, because I thought, Oh, I'm gonna get covid at some point

Um, but I'd rather just die in my own home, because if I go to hospital, they're not gonna give me the care that I need, because that's to put this thing out there for people with learning disabilities for older, frail people. Um, do not resuscitate. Yeah, right

And what then was happening? We were told to go out on our bloody doorsteps and clap for the NHS. And I'm thinking, but these people in the NHS are deciding who is valuable and who isn't. I mean, isn't that wrong? Like, you know, we're not gonna help people if they take up too much resource

So with if you've got a learning disability, we might not give you life saving treatment. How did they even come to that? I don't even know that. It was like I'm gonna die at home with my dogs with my husband not going in with all these messages

Um, and I probably sound in a bit bonkers at the moment. So in my mind, like Covid wasn't a straight line like it's so hard to talk about it because it doesn't come across like a experience. It comes across of a collection of experiences we had, like, you know, politicians, having drinks parties at number 10

And then we're told to stay at home and not see our loved ones we had, If I'm honest, I went to two funerals during COVID, um Online, which were online, And I was just thinking heartbreaking, knowing that people were not with their loved ones at the last moments of their time, knowing that the services and support for people just like shut their doors, people just did not respond it Still people are like using covid as an excuse mental health. I'm not under mental health services. They didn't contact me once during covid

Not once. They actually discharged me during Covid. And I was thinking, What the hell is going on? Like, um, you can't make this stuff up

There were some good things, like, you know, the mutual aid thing where we self organise we come together. People were kind, didn't expect the state to to to do anything. The information was way too late

Um, what would I also add is that what happened to deaf and disabled people? And I think was already there. It just got magnified and and then people going, we all know what it feels like to be in lockdown and a like, Hello. This is how disabled people live their life most of the time, not enough support to get out

Now you have had to stay in your homes with your lovely heating, your foods coming from Waitress and Marks and Spencer's and Internet and all disabled people. Thank God that they're living in poverty. There was digital exclusion

There was lack of support. Um, it was just horrendous. Horrendous, horrendous iness

And then I did get covid, and, um, I went into hospital and, like I I left it because I thought I'm not going into hospital. I thought I'd rather die at home. I can't remember two weeks of my life

I finally reached out and got help. And when I went into the hospital like the ambulance people, they were amazing. Absolutely amazing

Four or five hours I had to wait. You know I got after four or five hours, I went to hospital by myself. My husband's there crying because you can't go with anybody

I'm there on this wall and you see these The people that are looking like, um, skeletons, breathing masks and all of this. I was there for, like, a short time, and I felt better really quickly because of the oxygen. Um, but I just left it so long and they said to me, Why didn't you come and get help soon? And I was like, because if I'd have come in here, you wouldn't have helped me

They were I I felt like they were not going to help people at all. Especially that people like myself that they would consider, you know, not worthy of helping because of his d N R s and all that sort of stuff. Then, um, it's take It took me a year to recover from covid like I got used to just not even be able to get up and walk around without getting out of breath

Was in hospital come home, then had to go back in because I had a blood clot, and I I can say that I You know, the care in that hospital was great. It was awful. I mean, it was awful, but my experience of receiving care and it just is often awful

Best bit of it was the ambulance people. Amazing oxygen. They They were just so lovely

Um, I feel like I've digressed. I mean, sorry. I feel like I've gone all over the place

Well, you've No, you've talked about how it has had an effect on you and what happened, and I think you've just gone at the end. You've just gone back to actually when you had covid. Um but you've covered loads, but I think it's you've kind of Yeah, you You're really now talking about actually personally what? It what it was like to have covid and go into the hospital

Um, so I don't know if you want to say any more about that. Um, I I just think that if people were given more support, maybe they wouldn't have got covid if we understood how to look after ourselves. And there was more safety nets

Like I've really believed that I got covid cos I went to a little hospital appointment and to a point when I got covid and I came back and like I I think if I I had confidence and trust in the NHS that they would have saved my life if I needed it, then I might have got help sooner. I think the fact that we couldn't get P PE just was really difficult. I think that a lot of people were just shut away like out of, um, sight out of mind, whilst knowing that politicians were doing the opposite whilst knowing that this was just highlighting the lack of value placed on disabled people in society

Knowing that when I'm sitting on calls because I still was working prior to getting covid sitting on calls and every call was about how terrible the pandemic was, how care systems and care structures weren't working and in my head, I'm thinking, Why are we doing the same thing time and time again? If it doesn't work, why is it that the nursing homes are rife with covid and other places in the world? That wasn't the case, what has happened to the way we love and care about each other? Um, just really, really made me feel like we were. We were We were in this on our own and it's only gonna get worse. And if it happened again, I would take the same approach

Like even simple things are like I was in the beginning. I was getting all of these bloody food boxes, So I started off with lovely food boxes from, um, Westfield's big shopping centre where I live. So all the shops in there were giving, like all of these luxury goods and the but at one point I was getting three or four food boxes a week

Now I don't know who put me up for these food boxes. Don't know, didn't need the food. That wasn't helpful to me

So we ended up really giving that back to the community. But it would have been nice to get a phone call from social care to say, How are you doing? What help can we get? It would have been nice to be able to get P p when I needed it. Um, I think the biggest price to pay for Covid is the one yet undiscovered with the mental health issues and challenges that are coming out as a result of people's delayed

Um, processing of trauma is kind of just really extreme. And this idea we were all in it together is bollocks. We weren't all in it together

Some people were just left with no support. Even if that support came, it didn't make sense to them, it was a very top down process. Um, we're supposed to live in the developed world, and we're supposed to be like, looking out for one another, but didn't feel like that

It felt like the community was it didn't feel like the government was didn't feel like these institutions that are there to help us gave a shit or get really cared about people. Lots of the decisions that were made were made on a monetary as a value base rather than about people and what it meant to people in their lives knowing that so many people died and then Oh, my God, I just was like, Oh, God, you know, like, there was this disproportionate this conversation about disproportionate effects on, um, people from minority communities. And I was like, Of course, there is gonna be, you know, like poverty and lack of resource

Um, the kind of environments that we live in, and I never forget. There was one lady called Bailey on and she works for the, um and I'll never forget that she's in printing her mind. She had worked for, um, one of the big, um, train providers

And someone had said they that they had deliberately given her covid. I don't know if they did or they didn't. It was a big case on the news, and he'd gone and coughed in her face

And then there was this white woman, and from that it was one of the big rail companies saying, Oh, we can't prove that. And we're really sorry for the loss. And I was thinking, Are you really sorry? Um didn't feel there was any fault for people in in that

Yeah, mhm. I There's so much there and and what you're saying, you know, like we don't even know the half of it, have we? Because we're not even allowed to sort of grieve to heal to, you know, look at the at the moment people on strike and the people who are striking and the key workers who were there during the lockdown and everybody was hailing them. And now when they're asking for some extra, you know, money, you know, it's just that they like militant union, you know, in the union

It's just it's like it's been forgotten about really quickly and like you say that the whole thing in terms of that, it was just I mean, it's just and it's still it is so bad in terms of care, services and social care, and and it's there's so many questions still to be answered and we're not getting the answers because there's all these excuses of, you know, um, the rush at the war, you know, all the all this other stuff which has been thrown in the way of of the answers that we need because the cracks, you know, we knew there were cracks in in the system beforehand, but lockdown opened those cracks up and showed them, you know, for all to see, and, uh, yeah, there needs to be change, isn't it? That it just needs to be changed, and we have to push for it. All right. So I'll go on to the next question, then Isaac, which is, um, So there's lots of talk about post pandemic world

And what does this? So what does the post pandemic world feel and look like to you as a death or disabled person? So I don't think there is such a thing as a post pandemic world. I think until globally, covid is eradicated or managed with vaccines or I, you know, like the same people that had vulnerabilities to covid have those same vulnerabilities. But the world now has seemed to have forgotten that covid exists

So you've got public transport people no miles on. So that makes it a place which excludes people We had and do have a very individualistic way of looking at our rights. So there was a big thing

People have the right to get out and do stuff. Where were the rights of disabled people within that? What can we do as a society to collectively share our spaces collectively, ensure that people can contribute? Um, post pandemic doesn't exist. What can we as disabled people do? We've done so much

We will continue to do so much. Um, we will. I feel like bear the brunt of this, um, going forward

And, you know, we've got now not only the cost of living. We've got covid it rise in the winter, then the flu and knowing that all of our services are stretched. And I still believe that if people end up in hospital for covid, they're not going to get the care and support they need

It would go to the most healthiest. Viable was a word that was really used back in the day. Um, so load of nonsense, Post post covid world

What does it really look like? Harder than ever for disabled people don't know what the impact of mental health will have for people. Um, we need to do more. We need to ensure that not only are people looked after well, but they can mobilise that

They've got good jobs, good housing, good support. Um, and if you haven't, then you're just really screwed. Yeah

Yeah, OK, um, the next question is, what can we learn from COVID-19 pandemic and lockdowns? But I think you've sort of asked that answered that I think like, for me, what we can learn is that we need to really think about how we value people, how we organise our society to ensure that everyone's included. I think we We can learn that if we keep on doing the same thing in the same way, we will have the same thing happen. More people dying needlessly, which didn't need to die

You know, I can't even like my My feet and my body, like so many people died. Did they really need to die if organised and had the right support? Maybe they didn't need to die. Um, I think we need to learn as a society that we all play a role within that we need strong leadership that is gonna be value driven that sees deaf and disabled people as valuable members of our society that will contribute

We need that shift from economic value to human value being as important. Um, anyway, I could go on and go on. Um great, that's brilliant

So what would you like the inquiry to hear? I would like the inquiry to hear that the lack of information and support really meant that people lost their lives, that we have undervalued disabled people and their loved ones and carers for generations. As a result of the undervaluing, people lost their lives as a result of the government's inability to make decisions that made sense to people. People lost their lives

I would like the inquiry to know that those people in power that made those decisions should be held accountable. Uh, that when we were locked in our homes seeing Boris Johnson and his lot driving across the country, having parties and getting a fine for having a party was not acceptable. People lost their lives

I'd like the inquiry to know that when people had to zoom the last moments, if they were lucky, the last moments of their loved ones lives, um was just something that is heartbreaking. We weren't in it altogether. Those that had more resource and those that had more power had a different, um, way of getting through

They were lucky they had opportunity. I'd like the inquiry to know that unless you really support disabled people to have rights within our society, then this thing like these things will continue to happen. I'd like them to know that the experiences of our community are not all the same

And there was lots of division created as a result of covid, um, lots of disconnectedness. I would like them to really know that the experience of black and brown and monetized people was horrendous. And that really speaks to the racism that exists within our structures and systems, particularly around health and social care

Um, but I'd also like them to know that our communities, they looked out for one another. Our communities were the people that offered the kindness. Our communities unfortunately had to become resilient

And our communities are passionate about supporting each other. Right. Thank you

Is there anything else you'd like to share? I think the most important stuff. Uh, what more do I think needs to? So I would just like people to know that there are a whole lot of people out there mourning loved ones. There are a whole lot of people out there frightened of another pandemic, Another situation in the world

The war, the cost of living crisis that they know when the times are tough. They are the people that are gonna get most affected because they're not valued. They're not seen as valuable

They are not given the right support to live the lives. Um And then imagine you've got a natural disaster, or you've got a war or you've got covid they've got No, we've got no chance of death and disabled people. Unless you support us to have our rights, You really see that we need to have a different way in this world that values people, Um, and that we all have a role to play within that our leaders need to be leading by example

Our disabled people need to feel like they are able to contribute to our world, whatever that feels and looks like knowing that we've got even harder times coming with the cost of living with the climate crisis, with the war, all of those things. If you look at all of the people that are disproportionately affected by these challenges disabled people, women, you know, black and brown people, we have to learn from our mistakes and really make a world where everyone has the ability to get on and live and thrive, not just living. You're not living just getting up and sitting in a chair

Now it's being connected. It's being able to love. It's having your own home, having a job, and for some people there will be bits of achievable less so, um, other bits that are less so but actually knowing that you've got people to look out for you knowing that you're loved knowing you're cherished knowing that if you need help, is there is so important

Yeah, Nothing more than that. Thank you, Isaac. Thanks, Jeff


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