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Report transcript in: Kamran's stroy
Please Report the Errrors?
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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