Kamran explains to Isaac what happened when he broke his leg and was hospitalised during COVID. He emphasises that dignity and human-centred approaches frequently did not happen in respect of Deaf and Disabled people. Kamran knows the law and his rights, but still experienced being disempowered by healthcare staff during the pandemic. He believes that COVID has highlighted the inadequacies of the welfare benefit system.

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care professionals, together with the difficulties Deaf and Disabled people faced when support and services were withdrawn by local authorities.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

Yeah. Good. Well, so can I ask you, first of all to just tell me a little bit about yourself? Yeah, sure. So my name's Cameron Malik

And, uh, I guess in my working life, I'm chief exec of disability rights UK. Um, but outside of that, uh, I I'm Cameron and I live in London, and I was born in Pakistan, Got polio when I was three when I was in Pakistan. And I've been in the UK since the age of I think it was 6, 6

5 when I came to the UK. Um, so I've kind of grown up educated and everything in the UK. Um, I have two brothers and mum and dad who, uh, they all live in London

Um, you know, an hour, hour and a half hour, 40 minutes to an hour away. So, yeah, we're we're in London, and, um, we are, I guess, in terms of a lot of my friends that I I know from different backgrounds and cultures. We don't really have an extended family here in the UK

So we're kind of a small family. We are just here on our own, and, uh, cousins and uncles never came over to here. They went to other parts of the world

So in that sense, I guess slightly different to many people I meet. We have quite a few extended family members around. Thanks, Cameron

Cameron, what do you do at disability rights? UK. So what's your role? Like what? What is disability rights? UK. Yeah

So, uh, disability rights UK is a national organisation led by disabled people. I think that that's the really core important part of it is that everything that the organisation does and is and represents is from a lived experience of disabled people and, um, all of our lived experiences. So we are not restricted by any specific age or health condition or impairment

We are a UK wide organisation, but predominantly, the bulk of our work is in England. And ultimately, what we're about is listening and understanding the experience of disabled people and their lives in the UK. And, um, using that through our policy and kind of advocating, advocating and, uh, lobbying part of the charity, um, to bring about changes, whether that's through government, both national and local government, um, through business to make sure that we as disabled people have, uh, kind of genuine equality

Um, equity, Uh, and kind of, um, have rights as we as we know them to be. So you know, we have rights often in law, but we don't enjoy them in practise, um, and don't experience them so that we're That's what we're about. We're fundamentally about changing society, to make it a more equal and just place for all of us

Um, but focusing on disabled people. And so and you are your question was, What do I do there? I guess it's kind of what everyone's perception of what a chief exec does, but it's it's kind of making sure that we trace stays true to our mission. It's working with our board of trustees who are all disabled people and working with them to make sure both that the future of the organisation is secure, but also that we stay on that mission and that we don't kind of veer off, Um, that making sure that we have ways of genuinely listening to disabled people and making sure that the work that we do is co-produced with people, um and kind of always challenging ourselves to um, not think that we have all the answers, and actually, the answers sit with people out there who are living their everyday lives as well as bringing our own experience

Um, I'm quite keen as a chief exec to be actively involved in some of the delivery because I think that keeps me in touch. Before this, I was chief exec of a local D p O in West London, Uh, which was far more hands on, and I really value it and enjoy that being in touch with people. So, um, I guess I do everything from the strategy and budgeting and kind of the stuff that you expect as well as being, I guess the person that goes and speaks and talks at events and, um kind of represents the voice and the lived experience of disabled people and represents the organisation

But then I'd like to be involved in some of the practical work that we do Keeps me grounded. Thank you for sharing a little bit about your personal life. What? What you do at the disability rights UK

You said that lived experience is really important. So I wanted to explore for to ask you could you share with me? What was your own kind of experiences of the Covid pandemic as a disabled person? So when when we went into lockdown, my immediate focus was around. How is D r UK going to keep doing its business? And so kind of my focus was there

And as soon as after that, initially, I didn't really think that it would affect me in in any particular way and that would I be any different to my two brothers, my my wife and so on who are all non disabled people? Um, but it very quickly, I I suddenly realised that actually, all the things that I was taking for granted suddenly were very different or I couldn't do them anymore. So I was. I became very aware that, um, with my health condition, So as someone with polio, I've got restricted lung capacity

It's not a major part of my life, but I know, for example, if I get the flu or the cold and it goes into my chest, I have real problems of getting rid of that. Um and so I'm always really conscious that I need to manage that and just be, I guess be I've always been a bit more careful than someone else who might not be. And soon as you start to learn about what code was about is a respiratory disease

And, um, I suddenly thought, actually, that's me and that that but no one. None of my medical professionals spoke to me about it. No, I never had any communication from, uh, my GP or my any of my health professionals to say you should be isolating, or we think this is likely to impact on you greater than somebody else

Um, but I decided to kind of, I guess, restrict my life just to within these four walls, Uh, almost completely, Um, to the point, I wasn't going out. I wasn't doing the kind of, you know go out for your hour lunch or whatever it was and, you know, go for a bit of a a push. And of course, there are additional barriers within just doing those activities because the environment where I live, the pavements aren't the greatest, so pushing on them is quite difficult

So your life suddenly became very, very restrictive. Um, and I you know, I used a bit of public transport. I drive

And then, of course, the messaging was We'll only do necessary journeys or anything. OK, Just going for a drive, which might be my escape is no longer a necessary journey, so I won't do that anymore. Um, so it started to become restrictive, but it was, I guess it was me self imposing it on myself for a fear of catching it and not either not surviving it or it was

It was quite unknown at the beginning, wasn't it? We didn't really know how it was going to affect people, but very quickly. You you saw the numbers and the headlines and the news and the fear that was being spread about how it was attacking. You know how it was impacting on people

And the and the deaths, of course. Um, so, yeah, I just stopped doing basic stuff like going to the supermarket and was, uh, kind of tried to use online shopping, but that was really difficult. Because suddenly you know everyone, probably my neighbours and everybody else was trying to order online

Um, so the early bit was a lot of unknown, and that fear of you know, if I catch it, What will happen to me? Um, in the absence of real, I guess trusted information that that spoke to me or that was sent to me and actually throughout the whole pandemic. At no point did any of my professional medical people say to me that you should be isolating or you should be on the clinical C I was never on the clinically vulnerable, extremely vulnerable list, but it was only in 2021 when I finally met, um, my bone specialist face to face who was surprised that I wasn't told to isolate because they said any, um, any of our patients who has, uh, respiratory issues should have been on that list. Um, I don't remember when they said that to me

There's a There's an element of surprise and shock because now you've got a medical professional telling you it a bit of anger to say, Well, this is two years too late and OK, I, you know, touch you. I didn't catch it, but that was because of stuff I was doing purely on my own. And it was just me restricting everything

Uh, but at no point did anybody else kind of catch on to that. So I guess that was my initial experience. Was that that fear? And then, of course, you know, um, as a as a as a family, we're quite close knit

So we always would go to my family. My parents house, they're elderly. But of course, that all suddenly stopped completely

Um, and, uh, they didn't have any additional support, so they, you know, suddenly they couldn't go out because they're in their eighties. Um, uh, my dad has Parkinson's, and so he was put on the seat at vulnerable list. But to be honest, it didn't really mean a lot to him other than he could keep getting his

He struggled to get his shopping, but, um uh, and he didn't take up the food parcels because he didn't find whatever they were giving was suitable. So suddenly, I I you know, part of my role as a son is to support them so suddenly that you couldn't do that, and you didn't know how long he would not be able to do that. Um, and naturally, they were worried about me as a disabled person about what, and they were kind of saying to me now, you must stay indoors

Don't go out anywhere. Um, so that's what the initial period was like, Really? It was just grappling with all of that sounds really difficult. And I wondered if, like so when you decided to kind of restrict your kind of activities, like kind of social interaction, like did did you feel like, as a disabled person, if you got covid, you'd get the same support as other people? Or were you? Yeah

So initially, I didn't really think about that at at these start stages, but so in, um, so this was kind of going, you know, March, April May time. Um and I I live in a in a kind of AAA. I live in social rented housing in a flat, no garden as such

So there was no real outdoor outdoor space, so the early phase was pretty much indoors. But in November that first year in 2020 I I had a fall at home and broke my leg kind of the worst time to do it. Um because by then you were hearing about just ambulances waiting outside in A&E s for, you know, 15, 20 hours There was no bears

They didn't want you in hospital. Um, but I I Yeah. So I I had a fall, and, um, I remember we called the ambulance

That took a good 2.5 3 hours before they arrived. That period, I was on the floor

Um, but I got the distinct impression when the paramedics arrived that they had no intention to take me anywhere. It felt like they'd almost come in with that view Is that our main thing is you're gonna stay at home. We're not gonna take you anywhere

And I felt for the, you know, in the work that I do, we talk about, you know, being in control and wanting to be heard. But in that instance, it felt like they no one was listening, because when I was saying no, no, I know my body. And this does not feel like just a knock on my leg

I have full sensation in my legs, but he the paramedic just said no, let's put an ice pack on it. We'll give you, uh, some pain meds. We'll sit here for 20 minutes while all that works, and then we'll put you in your chair, and I was thinking, but no, no, I can't move my legs

I don't know how you're gonna put me in my chair, but they insisted, and they then picked me up from under my shoulders and basically said to me, You hold your leg while we stick you on your wheelchair And they put me on my wheelchair and then watched as I got myself in my bed because they basically said, It just looks like bruising. It's not broken. Um, it will probably go down in 24 hours

Uh, so just stay in bed, put a pillow under it. And, um, if after two days it hasn't improved, ring us again or your GP and now thinking back about it, I think, Oh, foolishly, I just accepted it. He just He felt completely disempowered at that point

Um, and I did. I stayed in bed for two days, uh, with no access to really toilet or anything. Cos I didn't have all of that stuff

I wasn't expecting to be in bed for that period, and I I rang. I rang. I remember still trying to work from my bed thinking Well, you know, it's just a bruise

Not no big deal. But even though it felt a lot worse, um, I rang the GP on the second day. So I fell on the 17th of November on the 19th, uh, about in the late morning, I rang my GP and just said, I'm in absolute agony

It's still swollen. I can't really bend or move my leg. Uh, so they sent a district nurse

I think it was or a rapid response unit from the local health people. Uh, and the nurse came and they looked at it and they said, Oh, we're gonna try and move it. I said, no, I don't want it moved

They said, Well, then you ought to be in A&E. So then they called an ambulance and I went in, and I then I didn't come out from that November the 19th. I went in and I didn't come out until, um, just before Christmas

Uh, and the reason I was stuck in hospital for that long was because none of the services could get any of the equipment. I would need to come back home with a broken leg, let alone give me a wheelchair. Um, because no one wanted to come to the hospital

Um, and no one wanted to come to your house because of covid. So there was all that going on, and you said, did I? Did I? Your question was, you know, did I think I or do would I did I think I would get worse treatment or lower levels of treatment. Um, I like to think, No, that it wouldn't have happened

But knowing what I know through my work, um, I kind of thought, yeah, I probably wouldn't be take, you know, I would be someone they would question is, you know, this kind of this whole idea of value of who you are and value of your life. And I experienced a bit of that while I was in hospital with my leg, which at the time, I just put it down to No, this can't be true. This just must be how you're experiencing the world at the moment, which was that I was in a room on my own, and there was another room next to me, and and, um, the nurses and others would go and have a chat with the other patients, but would never come and really just have a chat with me and just say, you know, how are you today? They would come in if I called them and if there was something to do, But at the time, I didn't believe it

But it subsequently, I've spoken to other people who are black or Asian, who've said, Yeah, they've experienced similar kind of Yes, you get treated. But you don't get that personal kind of, you know, over and above, kind of just having a chat, seeing how you are kind of that informal stuff, which was a bit of a shock, you know, do you think, does that Does that really happen Until you're experiencing yourself and then you hear other people? So I think I think, yeah, probably. And everything that we now know about things like, you know, do not resuscitate orders and the frailty index about how respirators would be rationed across who got them and who didn't get them

Uh, I think yeah, there would probably have been a question mark had I've got covid. Um, yeah, I just was really struck with, and I will come back to some other points, but I was really struck with this idea of somebody going into hospital. And we were all told to stay away from hospitals because covid is really, um, prevalent in hospitals

But actually somebody with a disability that could be additionally susceptible for covid getting stuck there because of a wheelchair or a, um, I don't know, Like, is it a walking aid or fame Or, you know, or a piece of equipment? And how is that even possible? Like it sounds bonkers. Yeah. So I I went from the So I was taken to A&E

They moved in me into their general wars. I was there for about 433 days, I think three or four days and they moved me to a rehab hospital. Um, and I was only supposed to be there for about a week or 10 days

Maximum. And the rehab bit is exactly that. It's how do we get you mobile? As much as possible

But of course, because of covid, none of the equipment supplier support mechanisms wanted to provide the equipment. Um, so I got stuck in there, and then the ward I was on when I was in my own room. Uh, covid started appearing on the wall on the other kind of open ward

So basically, I was They just kept your door shut all day and they would only come in if you needed something or if they were doing something. But so you then spent, you know, four or five weeks in a room, Uh, just thinking. Well, OK, you know, everything

You there's nothing you could really do. It got to a point where they said to me so that I The hospital O T s gave me a wheelchair with a leg razor that I could sit in. It wasn't very comfortable

It was too big for me. Um and I said, Well, can I take this chair home? So at least I can get out of here and be in my own environment. And they just said, No, we don't

We don't. These chairs are just for your hospital that you can't take this home. Um, but wheelchair services wouldn't couldn't come and see me

And it was only later on in December, uh, kind of the second week of December, where they finally said, you know, we need to get rid of this person out of this bed because we need the bed. They finally then said, OK, we can give you take the chair, but make sure you bring it back. Like, you know, I was gonna keep this thing

Um, but then what? The block was in order for me to come home. I needed in order to use the toilet, I needed a commode, and they couldn't provide me one that would fit over my particular toilet seat. So their answer was Either find one yourself or you're gonna have to wear, um, incontinence pads

And then the carers will come in twice a day to clean you, which I just thought was horrific. And I just thought, there is no way I'm doing that. But their view was, Well, if you if you don't find a commode yourself, that is what we will discharge you with, Um and you have no say in that

That that is the end of it. Um, fortunately, I I was able to find one and pay for it myself. Um, so for four months, I paid weekly rental to a company for this piece of equipment that really should have been provided

Um, now I'm fortunate. I'm you know, I was fortunate I could afford to do that. But I'm very aware that lots of people I know and talk to and people we represent at D r UK don't have the financial means and would expect quite rightly to have that provided for them

Um, yeah, so that that was kind of that sounds awful. And I'm like, just wondering, Like, what? How did it all make you feel like? What impact did it have on you psychologically or you know, your well being? How How did you manage Kind of that really awful time. I think, you know, in the time when you're involved in it or or it's a bit of a whirlwind, if stuff's going around or you're you're trying to both cope with the pain and the discomfort and the fact that you can't do the things you could do and, um, worrying about when you get home, how you're gonna get on the bed, so you're kind of consumed with all of that

It's only after when you get home and you're sat there and you think and you know, you sit and you have a cry, and it's not something I do very often, but that's that's when the emotions come out when you realise what's been going on and how you have been seen. So you know, in in our professional work, we talk about, you know, dignity and value and that kind of human centred approaches and per but then to experience how it feels when it's not like that at all. And you're just seen as this object that we've got to get out somehow and who cares how it happens? Um, it's only afterwards that that kind of emotion comes out to say, Is that what I'm? Is that who I am? It's Or that's how I'm seen, Um, and what value and worth do they place on who you are? Um, uh, you know, and and being stuck indoors

And it was a really surreal time, because so you've broken your leg, so you're very immobile anyway. And then I had a carer coming in twice a day, so there was the whole just managing that and trying to get the right person in to to provide the support someone that I could relate to and trust, but also who provided the support in the way that I wanted it. And I'm not someone who has personal assistance as the norm every day

So it was You can quickly had to learn. How do you communicate with someone? And how do you tell someone that you don't like the way they did something without them feeling offended or annoyed and then still having to receive support from that person? Um, so it was quite a a bit of a learning thing to do myself. Um, you do you You felt incredibly disempowered

Um, and yeah, kind of, I think, you know, looking back on it once, I was stuck indoors for that long period of time. And I've experienced it before when I've had spinal surgery, and I've been in the same this room that I'm in now for very long periods of time, with no ability to get out. You do

You start to get depressed. Your mood, you get a you know, lower mood, don't you? Um, kind of get fed up with things. You you don't You stop enjoying stuff

So, you know, I love watching movies, but I don't I can't remember watching a movie while I was you. know, you'd think that'd be the ideal time. You can't go anywhere

You're stuck in your bed. Watch some films. But I didn't watch any because I just couldn't connect with it

And I just wasn't interested in it. Um, so that yeah, that's what that period was was like And, uh, yeah, and you could see. And my wife, you know, was doing what she could And, um, but I was also I didn't want her to become my care or personal system

I didn't want that. Although she always said, Of course I'll do it. You know, there's no questions, but I thought that was really important to keep that separate

Um, and and yeah, and I remember kind of seeing her kind of doing stuff for me stuff that I would normally do myself or cooking a meal. And, you know, the other person starts to get ground down, don't they? Because they're having to do everything suddenly that they shared with you. Um, and you get a sense of guilt as well that you suddenly can't do anything, and there's no support to enable you to do it

Uh, yeah. So you you know, I joked with colleagues at work afterwards when I came back. That, in a way, I've got an insight into what life is like for many people all the time

Yeah, uh, you know, people have to live that way for always rather than I knew. Hopefully it was for a short period of time rather than a long term thing. But it it gave me an insight into what the future could be like as I get older and might need more support and things I've got to think about and plan

That sounds like a really difficult, um, time and like, thank you for, like, being so open and sharing with me. Um, I was really struck by when you said that. How, uh you didn't necessarily get that interaction with the kind of nursing staff

And you you kind of mentioned that. So I'm just going to be really feel unfiltered. So do you think that was because, like, you were disabled and a Pakistani British disabled person like because you mentioned other people's experience? Um what? What was going on? Like what? What do you think was happening there? I think it was because of being Asian because um, either side of the room that I was in There was two

There was a white male on one side and, uh, a white woman on the other side. And and And the guy his name was John. I kind of struck up a conversation with him just through the wall

Almost. And we stayed in touch, and, um, I just remember just those friendly banter conversations going on and I could hear them. But I I never had that at all

Or almost almost none at all to the point. I can't really remember them just coming in, having a friendly chat. Um, and I Yeah, and I And, uh, he was he was a disabled man

He was a wheelchair user. He'd broken his leg as well, so I kind of thought, Well, it I imagine it wasn't about being a disabled person. Uh, it it was

It must have been to do with my colour. Um, which, you know? Yeah. You don't like to think that's what caused it, But clearly that's what it was

Sounds horrendous. And, um, I I don't even know how to say that. It's just so it's horrible

Um, like you talked about kind of being in hospital. Um, and the kind of needing support. So how did you reconcile? Manage the logistics, like, you know, because in covid, we were told to have limited contact with people, But then you're in hospital, you come out and then you've got to get support

You have support from a p A or personal assistant or carer, and that's someone that's coming into your home. How did that, like, kind of play out? How did you manage that? How did you negotiate that? So, um yeah, I guess I didn't really have much choice in who I got and which agency, Because in order to get you out of the hospital, the hospital team arranged with the local authority that I needed support, and all they offered was really, um, 40 minutes in the morning and half an hour in the evening at, like, seven o'clock. Uh, so they would at the beginning phases

Basically, I would. I was just in bed and I couldn't really get in the chair. It was a bit later on that I started getting in my chair

Um, there was kind of that worry about someone else. coming into your home. And as I got to know this eventually I got one person who was coming in, who I did like the individual

They were really good at their what they did, and they were very respectful. But just in conversations with them at the time, she I remember her telling me that she didn't want to have the vaccine. And so she wasn't because of all the fears around what the vaccine was and it hadn't been offered to me yet, But it had been offered to her as a frontline member of staff and she'd had a date sometime in the future

But she was saying, Oh, I don't want it And they, you know, and it was really interesting that so I wanted her to have it, Um, because I was hoping that that would offer some protection both to her and to me. Uh, I felt I had no real choice. Um, as to what could I do to protect myself other than just wear a mask when she was in the in, in the in my home and she would wear she didn't really have what I would call P PE

She just wore a an apron. You know, one of those plastic aprons and gloves and a mask. Maybe that's all the p PE they they were issuing at that point

Um, and so it was It was a bit of a gamble, you know, it was a bit of a lottery as to because I knew that she was visiting lots of other patients, um, or individuals or people that she was supporting before coming to me and then going on to see other people. Um, and over the period of three or four months that she was coming in, you know, you would hear that someone that she was supporting had got covid. Um and so there was this just it was an incredibly risky time

Um, but it felt like there wasn't really that much you could do about it. Because if you rang the agency, their view was, Well, you know, we've got no one else, and we can't guarantee you if someone else comes, that will be any different. The local authorities weren't really that interested

They as far as they were concerned, we put a care package in you get it free for the first six weeks. And then after that, you're gonna start paying. And, you know, they were more interested in my financial assessment than listening to anything else

Um and so, yeah, that time went on. And I'm I'm one of these people. I I guess I'm I'm one of these individuals who thinks a little bit like I will do the best I can to protect myself

But what will be will be There's certain things that I just can't control so constantly trying to worry about. It doesn't do me any good, and it just makes me feel worse. So, actually, let's do the best I can to protect myself if I catch it, I'll deal with that bit if that happens

But right now, all I can do is this, um, wasn't ideal, but that's how it was. Sounds like there's a the and I've heard this from other people's, um, kind of lived experience and stories that a lot of people having to take a lot of responsibility individually and personally. Mhm

So my next question is that there is this talk, so there's lots of talk about a post pandemic world. What does this feel look like? to you as a a person living with disabilities or yeah, the people talk about pandemic as in the past tense. I just don't think that's the case

It's still around. It's still here. And just the latest figures I saw was, you know, 600 people had died

Um, just last week with the O. N s figures. Um, we know that's, you know, six in 10 of the people who die with disabled people or with with health conditions

Um, so my life is not, you know, in inverted commas normal, my normal by any stretch, I don't I won't go to gatherings. I won't go out much. I'm doing kind of the essential stuff

And I'm prioritising visiting my parents and being safe and keeping them safe and not myself safe, then thinking, Oh, well, you know, there's a football match I wanna go to, or whatever it might be, I'm just not doing that. And I don't intend to do that. I wouldn't go at the moment to, you know, parties or events like that

I try and stay away when I'm going on train. I've had to travel for work a few times. I will wear a mask throughout the whole journey, and no one else is wearing it

Um, I'm just waiting for the day for someone to say, you know? Why are you wearing a mask? I suppose, um, so I think for many people, people have moved on and thought, Oh, well, yeah, we we lived through it. Everything's fine. And we want to go and kind of feed back to our normality

But in order for them to get that normality, it means other people are having to stay in lockdown in isolation in heavily restricted lives. Um, yeah. And you know, as as we're entering now was today November the first where, as we entered, you know, the winter months we're already hearing about, You know, the double thing about both covid around and the flu, Um, and interesting

You know, my earlier point about not being on that clinically extremely vulnerable list because I'm not on that, and I'm still not on that. I don't get the boosters. So I've had, you know, the standard ones that everyone's had

But the current round of boosters currently, I've not not been called up for it. Um, so you know, my next task is to impress upon my GP to get me on whatever list I need to be on to try and get that because I feel I you know, I should have it too, So I can, because it's one of those things. You know, I I I do want to go to work because I you get tired of being in the four walls all the time, So I do choose to go into my office

Um, I I travel by mini cab, so it's, you know, relatively safe, but again wear a mask. Um, but it's kind of the crowded stuff that worries me. Uh, and sometimes it's it's inevitable that you will find yourself somewhere where there is a lot of people in a public place, like a train station, or, you know, something like that

And you have very little control in those environments. Um, so, yeah, heavily restricted. So I was wondering, like if you had a view on, there was clearly a political response to covid, and there was clearly a social response to covid like, and what you are talking about is I think people not being aware of, you know, wearing masks and how covid affects different people in different ways

So do you think the social and political responses to covid have impacted disabled people? Oh, um oh, without a doubt, um, decisions were being made at a very fast pace where disabled people were just seen as this vulnerable group of people. Um, and it was it was really interesting. You had this kind of dual thing going on

One kind of saying, You know, these words like, we're gonna put a protective ring around people in care homes, for example. And yet they were the very people who died. So where was that protective ring? And how was that ever even, you know, uh, managed And how those people genuinely protect because clearly they weren't, um, decisions around do not resuscitate orders

And the frailty index just point to what value was placed on certain members of society's lives and who was worth saving and who wasn't, um, and then, you know, and then the social thing I think it's kind of the masks is an interesting one. So you had someone like the police commissioner, uh, crusted a dick at the time coming out and saying things like, uh, so if someone's not wearing a mask, I'm up for someone to challenge them. But never then went on to say

But we have to remember, there are some people in our society who, for various reasons, are unable to wear a mask. So it's not their job to go and challenge people. And then there's the other side to all of this where people are taking wearing masks as a very personal infringement of their rights or something

Um, when Actually, it's that collective responsibility as members of society to look out for one another and to yes, I will wear a mask because they protect someone else. Um, we you know, we didn't really have that. Um, yeah, I was wondering if you think so

So what have we learned from And I won't say like the the covid pan. So what have we learned from the covid pandemic and lockdowns? Have we learned anything as a society? Uh, well, you know, I think 11 thing it has done is it's for us and the work that I do it it shone a light on the inequalities that we've always said existed And how frail some of the systems in place are, um, whether they're at breaking point or just not there at all. So I think it's really highlighted those inequalities, um, that for many of us we've been talking about, I think it's highlighted, Um, the inadequacy of support systems like the welfare benefit system to a wider range of people who up until that point have never had to engage with it

They've suddenly had to engage with it. And one found it the bureaucracy, a bureaucracy of it, of the system, and then just what it actually offers you as a result of, of trying to access support. Um, I guess my concern is that we we very quickly move on to the next thing, and we forget some of the you know, some of the things that we learned and thought about and talked about

Um and, you know, and you know, the the the public inquiry That's just starting up. I hope we'll bring, you know, bring to bear the real stories, uh, of people's experiences, both those who died but those who have lived through it, and the harms that they've experienced as a result of living through it and continue to continuing to live through, uh, the impact of it all. Um, so thinking about that inquiry, what do you feel they need to hear? So what are the things that the inquiry needs to hear? So I think a bit like what made Grenfell so powerful The Grenfell inquiry was when you heard from the individuals who lived through it

And so he he heard the powerful experiences of people who both were in the tower who escaped, who lost people in in the tower, the people who'd been raising concerns beforehand. Um, and the people who live continue to live with what happened today. It brings a reality to it that I think, you know, reports and documents and stats can never really do

They paint a very broad picture, but the real human aspect of it. So for me, it it's absolutely essential that the public inquiry into covid listens and hears direct from disabled people and people with health care. So the the very people who were disproportionately impacted by the virus, but actually the root causes of why those people were disproportionately affected

Um, the inequalities and systemic inequalities that exist in our society, You know, why is it that the highest percentage of people who live in poverty are disabled people, you know? So all of those systemic inequalities then played out in the pandemic. So we've got to hear from the ones who survived, but also those who lost loved ones, Um, who were disabled people. You've got to hear that

You've got You've got to put that on record. That that's the human story, isn't it? That's yeah. Um, you know, I was just gonna say, you know, one of the outcomes, I Well, I would

I really want is government to understand that they there is There is a genuine benefit and value in engaging with disabled people, something that you know, the UN has been talking about that the government must have a robust system of listening and hearing and co producing with disabled people. But they don't do it. Um, not not not meaningfully

Not a genuine commitment. Um, so yeah. Are you hopeful for a different future for disabled people? Well, I of course

Yeah. I wouldn't do this work if I didn't think there was. There was always hope and that there are good people who do want to see, you know, change who value, You know, diversity, equality, all those kind of words and the meanings behind them who value a rights based system who value that society is just better when we're all able to take part

Um and I Yeah, and I think I think, you know, working as allies and friends, Um, and putting pressure on those people in positions of influence in power. Um, absolutely change is possible. And you know, when you know when I look back to when I first came to the UK when I was six to today there have been massive changes in in culture and society and understanding

But there's always there's always more to do, isn't there? Uh, so we have come a long way. What the pandemic showed is very quick to roll back and lose some of the hard fought rights. That was in a swipe of a pen, uh, and a new act coming in, You know, the covid act that came in

So I think it's really it's more important than ever for us as disabled people as disabled people's organisations, to be coming together with a collective voice and power, Um, that we have collectively to lobby government, that we won't just stand by and allow this to happen, That we will speak out, um, and raise the raise, the issues. Oh, So I was gonna ask you Did you have any final questions? But then you started to talk about the covid act, and I was really interested in exploring What effect did the covid act have on disabled people? Like what? Yeah, well, I mean, what the the message it gave to a lot of disabled people was When it comes to the crunch and things are difficult, you're not that important because we can withdraw care, we can reduce your services. Um, because there's a crisis, and therefore you're not that important

That's what it said. Um, and suddenly, you know, the care act and the equalities act suddenly seemed like it wasn't in exist. Um, when actually the equalities act 2010 was still in force was still there

Um, but there was almost no regard for it. Um, the public sector equality duty was still there, but there was no regard for it. The covid act gave permission to local authorities and to others to say, If you're short of staff and money, you can start to roll back essential services to people in your community who need them

And I think that's that's That's a biggest fear and concern that how easily that that can happen and who you've got in government, who is allowing those things to go through. So when it comes to the voting, are they really scrutinising these things and hearing from the right people? And this is about that point that things get put in parliament and in before ministers that haven't had properer engagement and thought from those that it's gonna affect, Um, and they kind of pass because if you don't live that life, you don't recognise the impact that that's having Um, yeah, so yeah, uh, I think that that was the fear and that's the Covid act was, was, was exactly that concern, and we worked with others like liberty and other organisations to really try and challenge. Uh, that's throughout the pandemic

Um, and I think for a lot of disabled people, if you you know because you're a disabled person, you shouldn't have to be an expert on the law and political movement because that might not be your thing. But you will definitely experience the impact of those things and not know why it's happening and why. Suddenly it was It's OK to withdraw care and, uh, you know where he is and was and is, once you remove something, how hard is it to get it back? Um, because if you're then deemed to manage that reduced level of support, does that become your normal? A new level of support? That's why these things are really concerning

I just was, like, taken to that like a place in my own brain. We thinking, Isn't it just a requirement of living with a disability? You have to have, like, a certain level of health, literacy and a certain level of legal literacy? Um, that preexist And and then I was like thinking that people's experiences of particularly when nurse care and support was organised around a a service, maybe a day service that had not been able to function during covid. And now that being used as a reason people got on, they manage

So now we're not going to provide that support. Um, and these things are very present even today. Yeah, absolutely

And, um, you know, I've got friends are both professional friends and other friends who've got members of their family who are disabled people and, um, young adults who relied on day support services that were just suddenly stopped. Um, with no end in sight with no plan with no support, no one to contact, just left on your own to say, I won't just manage. Um and you know, those those individual families did amazing things

But you know what personal cost to themselves. Mm. And in my role, you know, you're you feel, Inc incredibly helpless because you think we're lobbying

We're campaigning. We're raising the issues. Both is the system doesn't wanna listen

It's very easy for it to shut the doors or just ignore And, uh yeah, and it It then takes, you know, a few to take legal action. But, you know, you could have the resource and the time and the just the capacity to do it, let alone anything else. Um yeah, difficult to be, um And I'm so struck with the fact that the people and organisations that we rely on as disabled people were also going through covid and people were locked in that, like so there was this double kind of whammy

Um, I was wondering if you had anything else you wanted to share with me. Um, no, I I think doing Just having this conversation with you in this last hour, you you suddenly realise how much of the stuff you've just stored and you don't talk about, um and actually how useful it is to just share it and get it out. And, um because you you make connections with other people who might It might resonate with them if all it offers is some sense of

I was not alone in this. We were as a community. We were experiencing this

That's incredibly powerful. Um, and it's also, I think, personally, just good to have a way of saying I I want to be heard. Um, people think people say to me, Well, you know, you're in an ideal place to have it heard you are, but you don't talk about yourself

You're not there to talk about you. You're there to represent our, uh, our community and disabled people, disabled people, individuals and so on. So I think it's, um Yes, it's been It's been really good

Well, thank you so much for your time. Really appreciate. Um, the time that we spent here, but I'm gonna stop the recording there, if that's OK


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