Clenton explains to Isaac that during COVID lockdowns many Deaf and Disabled people felt invisible. Clenton relied on peer support but knows that many Deaf and Disabled people did not have that, and they felt nobody cared. Additionally, he thinks that the systems for Deaf and Disabled people must be redesigned so that people are not marginalised or left behind.

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care professionals, together with the difficulties Deaf and Disabled people faced when support and services were withdrawn by local authorities.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

sure. So my first question is, would you introduce yourself? Uh, my name's, uh, Clinton Barson. Uh, I'm, uh I'm a son. Uh um, Born to par

Uh, uh, parents of windrush. Uh uh, generation. And that's how I would describe myself and a disabled person as well

Thanks. Clinton. What part of the country from Clinton? I'm from, uh, uh, I It's the central, uh, and and and the heartbeat of, uh, the UK Birmingham

So, um, so, uh, we we're really exploring, like, the experience of deaf disabled people and some carers. So, um, what impact did the covid pandemic and lockdown have on your life as a disabled person? Where do I start? And, um, start from the beginning. I I would say my experience

And, um and and I suppose my story of, uh um, uh, of covid is a personal one, if that makes sense and a personal experience of a lockdown, Um, for me, um, it was two fold I had to deal with, um, one. Uh uh, My family. Uh um you know, uh, I had an aunt that passed away from covid

I had my godson who, uh, passed away from, uh uh, covid And I also had to deal with, um, my mum having, uh, covid and going into a hospital, then me catching covid three times and being hospitalised. And that's the, uh, the lens of how I see, uh, covid covid very personal to er to me. And it brings up some really, uh, emotive, Um uh, experiences because, um, for my, um for my wife, Uh uh, um and And she works in the hospital

And she saw, um, saw me at my, uh, you know, drips And, you know, uh, things that you know in I t u and on ventilators, you know, and And she tells me the story that it was very frightening. Uh uh, for her. And it was frightening, uh, for for for me

But I can remember of, you know, uh, of it, and I wouldn't like I wouldn't wish that on my my worst. Er, er anyway, so that's what um, that's what? Uh, yeah, that's what, uh, covid is done. Er done to me

It's, um, made me realise it's very personal. It's not, um, it's not this distant policy. Um, thing that people talk about this disproportionately affect it affect me in my living room

And my, uh uh uh, you know, and my family Thank you, Clinton, for being so, um, open and like, sharing such personal stuff. So I'm wondering like she's talked about sort of your mum and relatives. And sorry about your relatives that have passed and your own experience

How did you make sense of, like the pandemic as a disabled person? So, like, how did you like what? What changed in your life? How did you make sense of it? That's a great question. I I don't think I ever made sense to me. It just felt that, um, me and many other, uh, disabled people were invisible

You know, um um, the, um What? What? It felt like it. It was lots of fragmented activity around covid that, you know, saying you could get guidance here, get guidance there. When you were looking, it was confusing

Er, er guidance. Which then, um you know, I wanted to help my own mum and my family and really didn't know where to, uh, where to turn, even though, um, we, uh, in social care. They started a covid stakeholders group, you know, And that was the only thing that, um, kind of reass reassured me that I was feeding in from other people that, you know, Don't forget disabled people

Don't forget, Er, you know, um, people who are on direct, uh, payments, you know, don't forget carers. You know, when you're talking about the workforce, you know it, it's everyone. It's all of us, you know, carers, unpaid carers, And, um, that kind of kept me sane

If that makes sense that I I felt I was doing something of importance. Thank you. Thank you for sharing that

So I just wanted to go back to that sense of, um, like, the the mixed kind of mess. Look, I'm getting a sense that there's lots of information coming out. You said you used an interesting phrase like people leaving people behind

Do you think people felt left behind? Oh, um, I I I know, um, people were er er er left behind. Uh, I was speaking to, um, other, uh, direct payment recipients. Uh, because we, uh um my company, um my organisation runs a er a direct pay a peer, um, support network

So, you know, and we used to do that in in person, face to face. And then when, uh, lockdown and covid it get we, um, went to the virtual world and, um, that I have to me kept me saying it kept o and others, you know, just having that, um, that I, um we you know, um, we were weathering the the, you know, the storm together and, you know, and we realised very quickly that, um even though people saying, um, you know, we're all weathering the storm, but we weren't in the same boat, you know, and and and and for me, that was more, uh, what of what people were saying. They were frightened that, uh, the emotions, um, people felt, um, frustrated that, um they thought that no one cared

It sounds really profound and very resonates very much with my own experiences. So I'm wondering if you had a view on Do you think these things existed within society before covid and were were magnified, or Oh, um, when we talk about, uh, Inequality, Uh, inequality has always existed. The, um The only thing that was different was covid shone a massive light

Uh uh. To show the chasm. You know, the big, massive gaps that we took for for, uh, granting

And, uh, everyone you know, thought that we had a safety net that was there for, uh, to to catch us in, You know, in, uh, circumstances like like we we found ourselves in, but the safety net and massive holes in it, uh, you know, uh, whole people and whole communities were getting lost in, and, uh uh, for me, it was, um uh, uh a I was angry because, um, it was people's lives, you know, and, uh, that were being destroyed. You know, families, uh, friends neighbourhoods that, you know, uh, you know, you know, was being destroyed. And I just found that, um, it was for me

It regardless around what political? Uh, colour or leaning on how you vote. Um, inequality has been around for eternity, and different political parties made political choices where they would put their focus really, really powerful. And I was wondering if we could go back to you

Talked about, um, the role of peer support. So, um, and your organisation so did disabled people. And people like yourself come together to support each other

And what impact did you think that had, uh uh it kept me sane. I'll be, uh uh, totally, Uh uh, honest. I was I was scared

Um, I didn't know where to, uh, to go, but, um, it was the peer support for me. Was, um it showed that we cared about each other, and it wasn't. Um uh, and And we were We were going through this storm, not on our own

And we were, uh, uh, you know, giving ourselves information that could upskill us to know what? How to try and navigate. Uh uh, the the So we also, uh, uh came together and, um, music. Um you know, we, uh, played music to keep our, uh you know, uh, sanity and a spirit of, you know, and, um, all through, uh, lockdown, my my go to, um song was, um, Kirk Franklin

Uh, I smile and and that was I needed something to, uh, to hope for, you know, and and And give me, uh, hope that, uh, tomorrow would, you know, uh, would be different, you know? And, uh and I know other members of the peer support group, um, had their own different, uh uh, songs and just talking to each other kept us safe, you know, and sharing information. And, er er working out plans to keep us safe. So get a sense that people, um, did what they needed to do because of a lack of maybe, um, information or I I I get a sense that you did what you needed to do to get through

I I I had to, um uh you know, um, because we felt we were left behind the the information and the and the guidance it started to come through, but it was It was, um, very light in getting there, and it wasn't clear what? Um, the message and how we should, uh uh um uh, you know, uh, how do we get P PE? How do you know? How do we enable our personal assistant, uh uh, to go shopping and get stuff for it? Get the medication. All of those, uh, sort of things we have to work it through, You know, uh, and, you know, um, when everybody else was talking about the workforce, you know, the front line using language, it was the front line, like it was an army, but personal assistants and uh uh, direct payment. Uh, recipients were thought of er like that, and it weren't till very, you know, um, I think because we were making our speaking up very loudly at, um, my myself and and and you and others to make sure, you know, to say we're here and we would like some signposting of information and advice that helps us to be safe

Do you think if that information was available at that time, the outcome would have been different for people? I think so. But, uh, I think, um, if the information, uh, and, uh, and talking to the most marginalised of people and communities and society and helping uh, uh, create some sort of, uh um to play on the, um you know, I said, um, the safety net a springboard. You know, that could help, uh, look at the the human potential of us all and connect and have a quality of life

But it it just felt that we were surviving in that in that, um, two year, you know, nearly three year window, You know, it was surviving, and, um, it was very scary in listening to how people's mental health deteriorated that was scary and feeling helpless that you couldn't, you know, just hug someone. Or, you know, uh, because you could see they were physically in pain, you know? And that's I will never forget that. Yeah, thanks for for sharing and also that really difficult stuff that people couldn't support their loved ones

Um, at times, which were really difficult to them because of all of these rules. And so, Clinton there is lots of talk. Um, and I'm sure you'll love this question about a post pandemic world

What does this feeling look to like to you as a disabled person? Uh, a post that, uh, for me eight. The fundamental thing that, um, we need to, uh, reprogram our system that we call, uh, society. And then we've created systems to deliver, like housing, welfare? Uh uh, social care

Uh, public transport. I think we need to, uh, reprogram take the the the the the keys back. Uh, rewrite the rules, re, You know, um, because fundamentally, we have to

The measurements that we say are important. The value that we say is important about wealth and economics. But it wasn't about people, so I had you know, I'm not saying, you know, wealth to me with when you talk wealth, you can't have wealth without health

So for me, how do we reshape when we say, um, you know, uh, you know, healthy prosperity, but good lives. You know, I would, uh, think, uh, good lives and meaningful lives. We need infrastructure that enables us to have good lives, because you you know, um and that's the fundamental thing that I I've I've taken from a pandemic

We have to redesign the systems and structures that our society is built up because we've got, um, the analogy I I use around, um inequalities. Uh, inequality is designed. It's designed into the into the systems that we have

It's designed into the structures that we've built. So if inequality is designed, it can be redesigned. But it has to be redesigned with the, uh uh the the people who are the most marginalised Uh uh Who do not trust systems or do not trust organisations

How we bring, uh, people together that it's about all of us. Not some of us, all of us, you know, and and and we can There is a brighter future. But it can only be a brighter future if we include, uh, you know, more inclusive more

Uh, one of the biggest things that I take out of, um, the pandemic. How do we create a sense of belonging? Everyone talks about, you know, inclusion. But for me, inclusion isn't a place inclusions belonging

So wherever you are, uh, you know, in you know your situation, how do you create a sense of blogging with an accent? The, uh, uh uh, place or neighbourhood or communities of interest. You know, it's about feeling a sense of belonging so nicely brings me on to my question. And I think we started to cover this

What would you like? The covid inquiry to hear from deaf and disabled people about their experience of CO the covid pandemic and lockdowns. But, uh, I'd like to er there's There's five. I think it's, um, five things I would like to try and er er hear

Yeah. Five things. I would like to, uh, hear, um, from deaf and disabled people

And, uh and, um, you know, black and, uh, Asian m, uh, minor. Um, ethnic communities. What was the ability to influence resources and, uh, allocations, you know, in your you know, uh, location and neighbourhood

How easy was it Was it to, you know, um, inform. You know, uh, um, you know the local decisions and support, Uh uh, for you, uh, as a, uh, as an individual and as a family and as a community, the second would be how much influence with decision making. At a local level

Did you feel you had never mind a national level or a regional level? You know, I would like to hear from people, uh, how they felt they could influence at a local level. You know, uh um, And then my third would be to hear from people how they felt the, uh, the infrastructure for networks and peer support. Hi

You know, uh, do you do they feel that could have helped you know? And my fourth would be, um, around, uh, advocacy, You know, uh, do you know the capacity? You know, it's easy. It's easy to I've always found it's easier to speak. Um, for other people, I've always found it harder to speak for yourself

Now, how do we, you know, how would advocacy and, uh, and the capacity for someone to speak on your behalf. How useful would that have been in in the pandemic? And then my my fifth one would be, um What about the, uh I'd like to find out from people's, uh, perspective and on the covid how they felt they had the ability to influence information, provision and communication. Uh, you know, throughout, uh, covid

Thanks, Clinton. So that's some really big points to, um, direct the inquiry. Do you have any final thoughts you would like to to share with the inquiry about your own experiences or that of your family members? But, um um I just think, um, we definitely have to have intentional actions to do

Do not repeat the past. Everyone keeps saying, you know, we'll learn from the past. We This is the opportunity to really, really learn from the past and hear from the most marginalised of people who feel, um you know, um, a distrust to, uh, systems and structures that we have in society How we, um, build AAA more caring society that we care about each other not, And the, you know, the the whole language of around inequality and, uh, disabled and racism

We've You know, the, uh it's all over. And it's dehumanised uh, you know, And if you think how deno, uh, dehumanising it can be for, for For me, it always starts with the language we use to describe people. You know, we can do better

I think we we can. And we all need to take action and care about those who haven't. Er, um, got someone to, uh, shout out for or speak up for

Thanks. Clinton. Do you have anything else you wanted to share? I I just want, you know, not just disabled people

Uh, uh uh, you know, deaf and disabled people and and, um, ethnic minorities. Uh uh, you know, I want all the population to care about each other. You know, this isn't you know, um, when we talk about, uh, inequality, inequality and climate change are bedfellows, but we should be talking, uh, a about that together that climate change will affect disabled people Will affect er er, um, black and Asian, uh, minority ethnic, uh, people

It will affect other protective characteristics. And that's why for me, it's about er all of us, not some of us. Thanks, Clinton

I think that's a really nice place to stop if you don't have any further comments. Thank you. Thanks


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