Mark talks to Isaac about how frightening and confusing some of the government advice and instructions were for Deaf and Disabled people. He believes that the word vulnerable was not always helpful and that often it is the environment people are in or the system they are trying to work with that makes people disabled.

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care professionals, together with the difficulties Deaf and Disabled people faced when support and services were withdrawn by local authorities.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

cool. Um, Mark, would you tell me a little bit about yourself and why you wanted to be involved in, um, sharing your story? OK, um, I'm Mark. I'm from Essex. Um, I have various different physical and mental

Um, if you want to call it disabilities conditions, et cetera, whatever. Um, through those various different mental and physical conditions and disabilities, I have worked with local, regional and also national organisations on trying to champion um, not only my voice, but also champion the the voices of other people who have similar and, um, through that It's actually why I wanted to be part of this because I know that the pandemic, um, and not only the pandemic, but the effects before, during and after have affected people with various conditions various ways. But also there has been a legacy that has occurred from that which in some respects will be helpful for some, but not helpful for others

And that's why I wanted it to be part of it, so that we can document and see how people that have been affected by this pandemic. It's not about that. Oh, it started in say, you know, March of 2020

And then all of a sudden things have got a bit better in 2022. It's about that. Yes, OK, it's a bit better now, but there is significant factors that is a legacy from that last two years and how it's gonna carry on for people with disabilities and conditions

And you know how they're being affected now by day to day life. Thanks, Mark. And thank you for interstate park, really important that we hear voices like your your your, uh, your own

So, um, so what impact did the covid pandemic and lockdown have on your life as a deaf and disabled person? The the lockdown part never had a massive effect because I have been quite insular anyway, because that's me. But there has been parts of my life where, of course, as I said in my introduction, when you asked me about who I am, where I am, what I am, um, has been affected because everything went from being, you know, sort of. All right, we've got that meeting that month and things that have been happening, you know, locally, regionally, nationally

And of course, everything went well, you know, end cut, all going off. So, of course, things were changed in the sense of rather than face to face things. It was all sort of the various different platforms that people were using

Um, some of it I never even used before. So it was a massively big education for me, because to be perfectly honest, I I think I've I think I've used face time with family and friends and that sort of stuff there. But this wasn't facetime

This was things like WebEx and Microsoft teams and zoom and all that. Um So So that was the thing for me there. Um, I've I've the lockdown aspect of it was a safety aspect rather than a, um risk because I was thinking to myself, Well, you know, if I'm gonna be indoors and I'm not seeing other people, all the different propaganda and everything that was on the telly was about that

You know, you can get it from hand to hand contact or someone coughing or droplets, et cetera. Do you notice it? So So I knew that I'd be safe. The only thing was that when you you know, and and putting it personally

Now, if you got a family, you worry about them. They worry about you. You're not seeing them

They're not seeing you. Um, so the the the bit that I do, let's say sort of in externally was OK, well, that's going to be an inconvenience. But we can do it via Zoom the thing that hurt me

And yeah, it hurt. Actually, the thing that hurt me the most was actually that I couldn't see. Sisters couldn't see brothers

I've got a mum and dad. So you know, the nearest thing to me is my sisters, my nephews, my nieces, et cetera. So the the the that was bad

Because even though that we've got all this technology, um, it's not as it's it's not like meeting them and giving them a hug and cuddle and and being with them and, you know, even smelling them, I know that sounds a weird thing to say, but even even the smell of you know your your sister's house resonates with you apart from it, the same as like, if they come in and they, you know, I've I'm cooking the dinner and I go, Well, what are you cooking tonight? She say you can't do that over a zoom call. Thanks, Mark. Um, Mark, you touched on, Um, if you're happy to explore

So, like, you touched on a sense of kind of feeling safe, like, how do you do you, like, how did you know what to do? How did you make sense of all the information out there as a deaf and disabled person, I Well, I didn't at first, because there were so many different things to be told. You know, everything changed from the day to day, week to week. Um, by the end of I think it was when we went into full blown lockdown

You know, um, we were told, you know, you can't do this. Can't do that. Can't do this

Can't do that. Then things were changing after that. About that sort of, you know, sort of It's gonna take this amount of time or that amount of time

It was It was worrying. It was a worrying time and period to be because there was no end in site. You know, you're not being told There was no nice things in sight either

You know, there was no, um uh What do they call it, um, rounding off the edges. You know, it was all very, very cut and dry. It was all sort of, you know, this is what's gonna be happening for the foreseeable future, and it was worrying

But then something kicked into my head, and I think a lot of people have this. It's a resolve to mean to say that, right, this is what's happening at the moment. I've got to take things day by day and see what happens

And as long as I'm indoors, as long as I'm safe, that's how I've got to cope with it. So I wasn't in the long term. My head stopped from being Oh, let's think about what's gonna happen next week, next month, next year

Let's see what's gonna happen today, this afternoon, tonight, tomorrow. And that's how I started to cope with it better, rather than actually sort of sit there and put my head in my hand, which I did do very several times, put my head in my hands and go cool, you know, Are we not gonna get out of this? Thanks for sharing, Mark and I'm I'm sorry. That was your your feelings and what you had to go through

So I'm wondering about and like you, you seem to have come up with a really, um, manageable way of dealing with the forever changing covid information and getting through. What impact do you think that time had on you personally? He's changed me as a person. Um, he's changed me as a person that even now and we are supposed to be in a time when, you know, everyone continuously says that Covid hasn't gone away

It's still there. But it's, you know, much, uh, a greater less of respect because of things like vaccinations, things like mask wearing things like people sanitising, et cetera. Um, you still got to be careful

Um, I have great, um, anxiety when I even go down to the local shops. And, you know, uh, do you know the worst thing was post office queue A few weeks back, I had to go to the post office because you had something that you had to do at the post office. You know, sometimes you can do it at the pay points or whatever, but no, this had to be a post office, and there was three people in front of me and in the post office I was at, they still had the round rings on the floor where people were in the safe space of whatever two metres, et cetera, And I'm standing in that

And all of a sudden someone who was in front of me was standing at the back of the the ring. The anxiety in me became so much because my head was ticking over ticking over ticking over. I was thinking, I can't stay in here anymore

I've got to get out. And I did. I had to do the the the the the Honourable thing rather than actually sort of, you know, blowing up and going, Oh, you know, sort of stepping you

And and then I realised, Well, you don't have to, you know, they've said to you, you know, we don't have to have that two metre rule Now it's down to whatever you know, sort of as long as you're you're safe. And that was just one instance, and it's like that that resonance is still there. It's you just sort of sit there and you just think to yourself Cool that that's not really me

So there is that horrible thing that you know, the mission. Impossible Theme tune. You know that mission Impossible Theme tunes in my head to go in, get something done, get out again and then it's have I sanitised? Have I? Did anyone come near me and cough near me? Did anyone touch me? Did anyone you know, it's It's that's still there

Um and I don't think it's gonna go away for a long, long time because as we go into the winter for some unknown reason, COVID seems to spike up a little bit more and more and more so I try to sort of protect myself. But that protection of my head, um, sometimes leaves me without even doing things. Thanks, Mark

And that really did make me feel and connect with that sense of not everybody is in this world where they can just do what they they want to do. So my next question, um, would have been And we can go over this because I think you started to cover this. There is lots of talk about the post pandemic world

What does this look like to you as a deaf and disabled person? Um well, they keep people keep saying about the post pandemic world, but the thing is that we're not post pandemic because it's still a pandemic. You know, Um, no one has ever said, you know, sort of. I know that other countries in the world are actually saying that, you know, it's all over and done with, But I don't think I've seen my prime minister in in this country say that the pandemic's over

I don't think I've heard that the World Health Organisation has said that. I think that's you continuously hear the end is around the corner. But how long is that corner to get around? Um, so I think that what we have to live in is the pandemic as it is today

That's where I'm living with. So I'm living with the pandemic as it is today. It is much greater to an extent, not what it was from 2020

So, you know, if you want to go out and you want to go to the shops, you know, nightclubs are open, pubs and clubs are open. Um uh, there's lots of different things. I mean, I've been offered and, you know, sort of times to go to meetings, uh, face to face those things have all come back

But then you've got the other end Where the, You know, I do a lot of work with the National Health Service, and very recently they went back on to sort of like a gold command where the Whenever you attend their buildings, you have to be masked up again continuously. Um, unless you're in a room on your own and you can take your mask off. But if anyone walks in, you can do it

So I'm not really in post pandemic. I mean, what's the pandemic now? Like and living like that, you know, and being very open minded to the point of, um, if those things come in, then I've got to live with it or or do deal with it, um, indoors and, you know, sort of, uh, that the everyday mark, let's say, um, I still for big shops get deliveries because I still don't think I can cope with going around sort of like major supermarkets and getting my groceries. Um, so I do get deliveries there that that I don't think I will ever change that

Now I think that's much more of a simpler, easier way even though that sometimes I think that that, you know, you don't get the the the best products. Um, but But that's a different story, you know, Um, but those sort of things. And also, I am very, very strict in the sense of if I have people come to my home and they're from, say, the council or they're from, uh, local authorities or other people, you know that they're coming into my property

Family and friends are a bit different, of course, because, well, I hopefully know where they've been, so to speak. But, you know, if you get the council come, I I have mask up and I ask them to wear a mask. Oh, and the the times that I've had people say we don't have to wear a mask anymore, mate

And I've gone well, you're doing this property and and they actually and one person who came to to do my boiler service, um, they never had a mask on him, and I said, Well, I have to rearrange getting them, and the person went away and they were Oh, they were going down. My stairs and they were screaming and shouting and moaning and everything. But that's the way it is

Thanks, Mark really made me think about how some people in the wider world are getting on. Like as if there is no, uh, consequences currently for people. But as a disabled person, you may still be quite vulnerable to covid

Um, the vulnerability also continues because you are made to be vulnerable, like it's like, um, the the boost of vaccinations. You know, um, the everyday population. If you want to call it that way, they're not being called for booster vaccinations

At this moment in time, they may be later, but it's only the people who are at certain ages and over and also people who they classify. I e the National Health Service as immunosuppressed or at risk. So all of a sudden you're you're sort of labelled, um, as a person that needs to have that protection or more protection

Absolutely. Um, so I don't know. Were you on, uh, in the group of people that were shielding and what was that experience? No

Well, I I was at the first, and then I I had to come out of it because it was very, very high intensive, especially in Essex. It was very highly intrusive, I think. And And that's a weird thing to say because you think that when when you're shielding and they're helping you, it's, um uh, for your own good and and it's really nice

Um, I was classic. I was told that I should shield, Um, and in the respect of doing it, I did because I stayed at home, there was no, you know, I've got no one who lives with me, so, you know, sort of I'm not shielding with someone else, but I didn't go out, you know? So so that was fine. Um, the thing, though, that I I just didn't want is that I had, um, every week someone comes to the door and they were bringing me food packages and food parcels and things like that

Now, that was lovely, but I didn't want them. I didn't need them, you know? And I thought that they could have been someone else that was much more worse off than me. Don't get me wrong

I mean, you know, So it's not about that. I'm sort of rich and you know, sort of. It's fine and everything

I think because it was lovely to to have that. But I I didn't want them, and and they said, No, but you must have them. You must have your food parcel

Um and I even said, you know, please take it to someone else. Um, they walked off and they left it at the door step. And so I walked out the door and there's there's two like two or three bags at the front of the door and nearly fell over

In fact, the food nearly broke my neck because I I opened the door and I went over over the bags that were left, Um, so it was It was odd And it, you know, sort of I contacted different people and said, You know, but But we we just want to look after you because you're in that group and and it was nice. And I felt quite, um, special. Actually, I felt special because, you know, people were looking after me

There's a, um and it was set up with the council, but it was called Essex Cares. And, um, they were people that were just volunteers And they were. They got your telephone number because you're on on a list and they just wanted to phone up every now and then and said, Look, you don't even have to talk to us

We're just calling just to see if you're OK. That sort of thing there, like that was lovely. And I thought that was just really, really you know, it meant the world to me Just to have someone else who wasn't family wasn't friends

It was someone I didn't know. And they gave me that. That was nice

But all this sort of like our food parcels. And you've got to have this and you've got to have that. That wasn't me

Did you find, like, how did you find that being on you were on a shielding list? Was Did you understand what that really meant? And, Well, well, no, not really. Because the the letters and I've got to say this, So I'm pretty good at reading, you know, stuff. I'm I'm not, um, you know, sort of a person that can't understand, you know, sort of basic sort of letters that you get sent

But the letters of shielding was was quite gobbledy ***. It was. It was sort of, um, things like acts of law under the, you know, the covid act of blahdy, blah, blah, blah

It was this this this and this, um and it's all the thing about that you are at risk. And And it was quite a frightening letter as well as sort of a very sort of, um, hard letter and and strange letter to digest in your own head because it was like, um, you often wonder, uh, you know, sort of, that it was again, like, you know, you be living in some kind of, uh, land years ago and and they send you these things and it's like, you must not do this, That, like, house arrest, that you've got sent, you know, sort of said, You know, from now on, you're you're so vulnerable and sick and and and I've always advocated as a person with disabilities that, you know, you are not disabled. It's the environment that disables you

And then all of a sudden, you get this letter that comes through. And it is this that you are this frail person that you know sort of will break like a vase on a on A on a, uh, you know, sort of a a table, you know, And this is what you gotta do. And and, of course, don't get me wrong

There are people that were very, very vulnerable that, you know, would you know if they've got the condition. If they got covid, they would have been seriously, seriously unwell, and that was the main thing about it. But I think that some of the wording some of the ways they did it could have been done much, much better

In fact, I think it would have been better for them to have got a group of people with varying abilities and disabilities to have actually said, Look, we've got to do this because, uh, you know, we want you to be safe. How do you want us to sort of convey that to people? Because that would have been better, because all the grey suits got together and they said, Right, let's send out this letter and let's make it like that, you know, sort of. We're controlling you and that, weren't they? Thanks, Mark

Really insightful. And, um really, um, great insights to kind of like that experience. Um, I was wondering if you were prepared to share with us, so we we talked about sort of, sort of what? The impact is kind of covid and lockdown has on you

So what would you like or or so what do you think we've learned? Um, as a result, you know, what do you think we've learned as a society or what? What have we learned as a result of covid and the covid pandemic? Um, it's a really hard question to ask and and a really hard question to answer because I have no idea what we've learned yet. I I think people are still learning. Um, because as I've said before, I don't It's it's not over

It's not over and done with, You know, if they could actually, you know, scientists and all all the different, various different, you know, sort of, um, virologists and everyone all got together and they said, right, it's gone. That's it. It's over and done with, you know, no more covid

We don't even have to have it in the dictionary anymore. You know, it's it's gone. But we can't say that because it's not and And I think all we need to be looking out for is that how are we gonna do things differently if the pandemic gets to the point of where it was beforehand, You know, how do we cope with it? But how do we do it better? I think that one of the big things that we need to be pushing forward for is that the the voices of people that have been affected so greatly that is, people with disabilities, older people, people with immunosuppressed, uh, conditions need to be coming out and actually saying, Look, we had this imposed on us last time

This time we want to have our say and how we feel we can be. You know, we're we're not thick, you know, sort of. Our brain's not popped out

The the brain's still there. We can still talk. Um, listen to us and and and listen to see how we want any new spike or any new area that what happens, this is how we want it to be done

We don't want to be told. We don't want to be, um, given the sort of, you know, the black and white you know this is the way it must be. We want the nice little version where the, um, we get our own say we get our own views and we get to be told Look, this is what's happening

These are the These are the, um uh These are all the different things that could happen. And then it's our own free will for us to decide what we do. Thanks, Mark

So that does lead us really nicely on to the next fisherman. What would you like the inquiry to hear from deaf and disabled people? I just think that I think that we need to be listening or they need to be listening to people's thoughts and the way that it affected them. I think that a lot of people had their voices

I mean, I always go on about the voice of the person and that sort of stuff there. But I think the voice of the person was literally sewn up. It was We don't want to listen to this

We've got to listen to this. We've got to listen this way. We you know, we have got scientific now

I'm not gonna argue with science because That's the way that you know, they've They've got vaccines, et cetera, and all this sort of stuff there. And I'm not one of these vaccine people that you know is an anti vaccine or whatever like that. I think that I I think people need to have their own opinions, but we need to be listening to listening to the scientists, listening to how they go from there

I think the inquiry needs to be listening to how, um, people have felt the isolation that some people felt. Um, I think that the government failed in its responsibility to look after people who were distressed and the the voices were silent. They they decided, and I think that what they thought was that if they just made people vulnerable and they put them on AAA an X list that would help them be protected, and we can see that it didn't because there were still people dying

There were still people that, um, it didn't get through to, and also there was people that I know that are equally as vulnerable. But they didn't tick the right boxes to become like I was and in in a vulnerable situation, which I thought was unfair, because how dare anyone? How dare anyone actually think about that? That person's vulnerable and need help, and that person isn't. And that's one thing that the inquiry needs to look at that Who made that list? Because there were people that even weren't disabled

But they were so mentally frail through what happened because no one had ever been through this pandemic. You know, it was a complete and new thing for anyone, right? It was unprecedented. And I knew people that weren't ill, but they couldn't get out

And currently they are still scarred by the pandemic that we've had because they had nothing to turn to. You know, they couldn't even go into work. So I think that we need to be bringing back, um, a little bit of kindness again, you know? And I always say it for different things, but, um, we I think we failed some people, and I think the inquiry needs to hear that, uh, in the majority, a lot of people were protected, but there were, but that that's fine you're hearing from us

But we want to hear from the people. The inquiry needs to hear from the people that weren't protected and they weren't deemed to be frail. Thanks, Mark

Really important points to make. Is there anything else you'd like to add to this historical account of this covid inquiry? Just just that, you know, sort of. We've been through two years of strangeness

I think that with a little bit of, um, with a tiny little bit of organisation and also listening to people, whatever happens in the future or even if there's another pandemic or whatever, we can then be, uh, you know, sort of prepared. I don't think we could be prepared for everything because you know that silly, we can't be. But I think that we can learn a lot from what happened over the last two years and what's still happening

And I think that again, we we need to be listening to a lot of people and we need to be understanding the stories of people what they've gone through and even even if you heard one story or or the inquiry is one person and they've told them about how they felt If that just changes just a tiny weeny bit, then people have done their job. Thanks, Mark. Really appreciate that

So I haven't got any further questions. Do you have any questions for me? No, not really. It's just Thank you for giving me the opportunity for doing this

It's It's sort of, you know, as a person who who lived for it for for for that long. It's nice to have, um, an opportunity to be able to, um, to speak because we a lot of people felt, you know, that, Um, you know, as an adult, you know who who who's got the vote and everything like that? Um, Well, it was like like cutting your arms legs and head off. It was, like just sort of You were nothing

You became nothing cool. Thank thank you. Once again, for your contribution, I'm gonna stop the recording now, if that's OK, um

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