Report transcript in: Miro's story - Narratives of the Global Impact of COVID-19

Please Report the Errrors?

it?

Uh,

yeah.

Yeah.

So could you tell me a little bit about yourself? Yeah.

So, uh, my name's Miro Griffiths.

I'm currently I'm 33 years old. I live on the,

uh, which is in Merseyside just outside Liverpool.

Um, I am a

disability studies scholar at the University of Leeds.

That means that I'm interested in

disabled people's position across

political, economic, cultural, social arrangements that constitute

the societies in which we live in.

I'm also an advisor on disability policy

to parts of the UK government and the European Commission.

Um, and I also work closely with disabled people's organisations,

uh, in the UK and across

mainland Europe. Uh, I identify as a disabled person.

Um, I have a physical impairment. It means I

use, um, 24 hour personal assistance that's funded through

a personal health budget.

And I have a range of assistive technologies that I draw on

in order to

have, uh, as much self determination,

choice and control as I want

over my life.

Thanks, Mira. That sounds like you're a very busy person.

I'm wondering, like what you do, Um, for fun. Like what?

What's your thing that you do when you're not working to all do this policy work

for fun? Um,

so I my main kind of

guilty pleasures revolve around,

uh, watching a lot of sports. So I watch a lot of football.

I find football very relaxing to watch.

Um, and I'm also, uh, heavily engaged in gardening and growing herbs,

and that links into my interests

in cooking as well.

Um, I've I have

a, um a keen, uh, I'm a keen eater of of French food.

Uh, I adore everything to do with French food.

Um, hence why my, uh my stomach size just keeps growing and growing.

And I also spend, uh, quite a bit of time engaged in,

uh, playing board games and video games

as well.

Thanks for sharing a little bit about your personal life.

So I was wondering if you would be happy to share with me.

What was? What impact did the covid pandemic have on your life? Um,

and what impact did like lockdowns have on your life as a deaf and disabled person?

if I think about the pandemic, um,

I think

I'm thinking let me think else about this.

So, as a disabled person,

you're you're constantly

aware. I think of

the fragility of life.

You've got various different health conditions and needs that need to be

maintained and met, and

sometimes that might be

at a point of crisis or might be long term planning and management.

So you're always aware of or I'm always aware of of my own

kind of mortality and

the need to be quite proactive in

in making sure I'm safe, um,

and and and in a stable situation.

And then when you

or when I experience the pandemic,

became overtly aware

that

there was this

societal response to how do we address

growing mortality and growing risk and crisis in people's lives and communities?

But throughout all that,

as a disabled person,

I became

quite well, painfully aware

that I was being de prioritised

the responses, whether that would be state or,

um, health services or even economic as well.

there was a level of fear and anxiety about health and the response of your health to

a a virus,

but that was entangled

with this

social response

that's rooted in the in the politics and the

economics of society and also in the I think

in the cultural views that

people have towards disabled people.

And

I became just

utterly, um,

saddened by how

we as the sale people

it appeared that we didn't matter

and

that

the deaths that we experience in our community

And I would see, you know, friends and colleagues, um,

who would become very ill or even die?

Um,

it was, uh our deaths were almost justified,

you know, it was expected.

So why you know why? Why would there be any surprise?

Why would there need to be an outcry?

So you started to

Well, I started to become

kind of really anxious and worried about

again my health. But also,

what would happen if my health deteriorated

in a climate where you're No, you're not a priority

where you've got a constant question mark over you about

what

level of response should you is justified.

And how far will that response go

in terms of trying to protect and save you?

So a lot of it was was fear.

Um,

a lot of it

was

isolation in terms of,

um, you know, remaining in your own home.

Uh, and for me, it's quite fortunate My home is fairly accessible.

And I have a good outside space where I live.

So I I had those those those, um,

accessible routes in order to

maintain some level of of well-being.

Uh,

but I think you

I think I became also quite aware

of how

you start to scrutinise the behaviours of everybody around you.

You almost start to police people.

Um,

almost in a kind of form of governance, really? Where I would I would start to

think about p A s, family members,

my partner, friends, neighbours so on.

And I look at them and think,

Are you a risk to my health?

the importance of community which you desperately want

in this pandemic,

the sense of community is

coming up against

this overt form of surveillance and policing of everybody around you to think

Do you recognise the the fragility of my health?

And are you taking the necessary precautions

that could be so detrimental to me if if the virus gets through to me

and I I think that compounds the isolation that you experience.

And for me,

that's also compounded

because you've got this cultural narrative that

you don't matter as

a person

um and people will do as much as they can.

But I think

the pandemic also showed us

as a society that we are

so rooted in

desperation of our of our own survival

that often we can.

We we see each other as competition

and we're desperately trying to protect ourselves

at the expense of others.

And again, that's why you know, I I became so

sad. But also I became

so angry

of, you know, reading social media responses where people said,

open up society. You know, it doesn't matter about these people

or,

uh, open up society and just segregate these people.

And you think

in a 21st century society

you've got these overt forms of

continuing segregation, isolation,

and we know as a as

a community we're subjected to

incarceration and segregation

institutionalisation

daily basis in different forms.

But this is an example where

the collective response of society was to say,

Just stay in your institutions, stay in your stay in your segregated environments,

whether that is your home,

your nursing care centre,

your day centre, and so on.

for me, you know,

in summary it was it was a feeling of

of sadness and loneliness

and extreme fear

and worry.

But I think a lot of that was because of

the The primary reason that happened those feelings happened

was because of the political

responses

and the social responses of society towards

disabled people in the context of a pandemic

Really important, Um, points you raised and I want to take you back to this idea of, um

kind of like manage on a on a daily basis.

How did you make sense or or manage or even kind of just get through practically,

um,

considering that you've talked about,

like lack of leadership and the already challenges

that we have in society around disabled people.

So I think for me it it the way to manage it was

recognising

very, very micro level

or local level form of interdependency.

So very quickly we thought about as a family,

and it was

there was myself and my partner primarily in the home.

Of course we had P. A s and on standby and so on,

but we started to very quickly think OK,

how can we support each other in this process

and often does a sales person?

Historically,

I've been

positioned as

of having assumed passivity and dependency.

I don't You know, I I draw on things, but I don't really contribute things in, in, in,

in, in the alternative

but

in the context of the pandemic.

When you're you're you're you're starting to reorganise

your your networks. You're starting to think about how do you

function on a daily basis?

Continue either working or just surviving,

Um, or just trying to, you know,

participate in as in as many,

um,

groups as you, as you feel comfortable doing so or wanting to do so

very quickly. We realised that we needed to understand

for me and my partner

we we needed to understand What could I do for her? And what could she do for me

to to in order to

help us survive, but also help us to

yeah,

survive. And I suppose th thrive is the wrong word,

but

have some level of of

enjoyment in in the spaces that we have to

remain in. So I think happiness, enjoyment and hope is

is so essential to

to to existence.

So for us, it was a case of thinking about

what can we do for each other?

and kind of really embracing that notion of of interdependency.

And then then I think it was also

recognising that I had to

start making decisions about my care needs.

And

that was quite fascinating because

so long I've spent

years and even say this is a kind of

political activist and I say This is a policy

adviser and I say This is a disability studies scholar

Despite recognising the importance of

disabled people,

ethically, morally

should be having forms of self determination, choice of control. You shouldn't be.

We shouldn't be asking for permission to do

things we should be expecting that we have a

value and space to to do things we want to do with our life

and have sufficient support

to do those things.

But despite all that knowledge,

I've still spent my entire life as many of

my disabled peers have

in asking for permission

for everything

and trying to appear grateful when you get support.

you know, when I've had I've got packages, I've had packages of support

funded by health, funded by social care, funded by mixture and so on.

And all that time you've always felt you've got to ask

And

if you want to make amendments, you want to do any tweaks

you've always got to ask. You gotta wait for the response

from those who have got assumed credibility and

and

decision making power.

And

when the pandemic started, I thought,

OK, I need to make tweets to my support. I need to change that.

I'm gonna bring in people

who previously wouldn't be allowed, you know, inverted commerce

to be providing you with support such as family members in the same home.

And at the beginning, I thought, Well,

I'm gonna have to ask all these questions and get this all set up.

And then I thought,

Actually, we're talking about

making decisions

because I'm trying to survive

and there's an existential threat here.

And then I realised

I don't need to ask permission.

I need to be accountable and transparent,

So I will tell people what I'm doing

when I think it's legitimate to tell people

otherwise. I'm gonna do what I need to do

in order to survive.

So that meant

reorganising my support,

making sure that I protect my P A s. As much as I tried to protect myself,

it meant as I said, bringing in my partner

as a as a paid p A.

To to assist me

and

all the way through this.

I was

being open. I was, you know, writing down my decisions.

I was being quite clear what I was doing or why I was doing it.

But I stopped asking for permission.

And that was quite a kind of Liberator moment. Really,

because

it was a way of thinking a way of realising

ma, I do matter and my decisions matter,

and I don't need to

mask anymore.

I'll just tell people what I'm doing

because this is my support

and this is the support that I think

is necessary and I believe is

organising a way to be sufficient to allow me to have

self determination, choice and control.

So for me, it was

the the the the the The management of the daily needs

was based on those two principles

the importance of interdependency

and the importance of

no longer asking people for permission.

That really resonated with my own experiences.

Like I've, um, spent many years being in fear of like,

um,

social care. And

I think the pandemic definitely made me feel like,

you know, what's the worst that can happen? I'm not gonna be

asking to be flexible with my care and support.

Um,

but I I'm conscious that I felt like I probably am

in a really privileged place to be able to do that.

Um,

just so much in what you you spoke about.

And I wanted to ask you like there was lots of talk about this post pandemic world.

Um, like, what does that feeling look like to you as a a like disabled person?

Disabled activist?

Oh, these. These are great questions.

Um,

a person, I think a

post pandemic society

an attempt

revert back to how things were done

for many years of disabled people.

We were arguing for

alternative ways of working.

We were arguing for alternative ways of organising support,

drawing on support more flexibly,

making immediate changes to our support and so on.

We wanted more access to technologies and assisted technologies.

We wanted more accessible homes

so that we could do things in our homes that we previously couldn't do before.

And whenever we demanded

changes in the past,

we were always told

No, it's not possible

or it's not needed.

And then when you have a pandemic

which

is a is a you know we have, we acknowledge

it's

an a pandemic is extremely devastating.

It's violent,

it's oppressive

at the same time.

Simultaneously,

it opens up possibilities of rethinking about how

to organise bases,

what really matters,

what can be done. What do people want

and again. And I think that you know the point you made before about

there there is a level of privilege. So, you know, I was

I was safe to an extent

because of my privileged background that I have

so that afforded me a time to think about

what can we do with the way in which

we've we've destabilised current ways of being and organising

and existing,

and

I realised

that

we've got the potential here to really radically overhaul

what we've done previously

and think about what is much more

preferable and possible

for tale people to have

accessible spaces

to organise the the the way that their life are around, the things that matter to them

and the things that are best for their health and for their well-being.

And I think there was a moment when

we could have continued. In that way,

we could have reimagined. How does

education work

when we bring into different forms of participation

when we bring in hybrid learning where

we think about alternative forms of assessment

and so on,

we could have done.

We you know, we had the opportunities with the labour market,

with people who could work,

rethinking what it meant to work

because we were reimagining how to access health services in different ways.

Again, some of it wasn't was opening up new restrictions for people.

But

if you're if you're thinking about this in the context of progress,

you can take aspects of pandemic life to think

well. How does that destabilise the the

historical problems and the legacy of issues

that we've we've been struggling with?

So there was a moment when we I think we could have continued with that idea

using the pandemic

as a way to disrupt

the unnecessary restrictions that have been imposed upon us as a community

for so long.

And then

I think

this narrative

of post pandemic society,

coupled with building back better,

which I think it was also

deeply harmful

because

it meant that

the dominant voices in that

were telling us

Go back to normal

and

as the sale people

we've all said for so long.

Normal

is such a toxic

issue.

Normality or normality

is deeply harmful to existence,

and

normality doesn't work for anybody.

Why would you want to chase normal

when normal

doesn't allow for

the acceptance and the celebration of different ways of being,

of participating,

of living and thriving and flourishing and so on?

But I think the dominance of chasing normal

and for me it is a form of ableism

there is Society has got this particular view of

what it means to be productive, what it means to have value

what it means to be successful.

And the principles and values that underpin

what it means to be a AAA good

individual

are often linked to these ideas of self-sufficiency

individual responsibility,

aggressive competition with everybody around you.

And I can see all those kind of principles now bleeding back into this

narrative of the post pandemic society.

for me, the post pandemic society is going to compound

the

historical oppression and marginalisation that we had

that we have as disabled people

on top of that

the consequences of a violent

experience such as a pandemic

where people didn't have access to the health services

that they needed,

where they've been left behind,

where they've been dismissed for

requesting alternative forms of participation

in the things that they want to do with their life.

So you're getting the historical oppression that's been imposed upon us

with the consequences of a pandemic,

and I just feel that

there's a real

danger now that

disabled people

are gonna be further dismissed coming out of this.

But the hope is

that

you take the ideas

and the narratives and the experiences

of disabled people and their organisations

during the pandemic. Things like this

and you use this to say

we don't have to continue with the way things are.

But there is an alternative that there are possibilities for change,

and these possibilities are are much more preferable.

And I think

this goes into something that you know is really,

really kind of central and core to to my

activism,

which is

our experiences as disabled people

is not

to is not to be used in a way where

we find a way for disabled people to fit in

to existing society.

You use the experiences of tell people

to reimagine

an alternative way of organising society,

which accepts and celebrates the participation

of everybody disabled and non disabled.

But it also allows us to

reimagine a world where

you're championing principles of accessibility

and participation

and inclusion,

and you use those principles in order to

organise communities

and spaces.

And I and I think that the post dynamic society

will will not be built on those principles

of accessibility and inclusion

and participation.

They're gonna revert back to

principles of

self-sufficiency

individual responsibility

and competition.

That just leaves me with so much sadness. Um,

but I think it it's probably a fair

like I I I feel that's probably really where we're we're heading what we are.

So, um

So even when you were talking,

what kept on coming to my mind was that you

talked about the social response and the political response,

and I was wondering if we could explore like, you know,

the challenges around the social response, the challenges around

the political response and what have we learned

from the covid pandemic and the lockdowns socially,

politically,

And I think the the key thing. What we've learned from

the

the pandemic in terms of kind of

political and social responses

the importance of representation

within those processes for

making decisions,

determining resources and so on.

Because

early on in the pandemic

there was a considerable lack of attention given to

disabled people.

Our organisations,

our representatives and I use that term loosely

and uh,

recognising that their contribution and their role

in saying

these are the things that matter. These are the things that need to be prioritised.

And it wasn't through lack of trying. You know, we have the evidence that says

disabled people's organisations. They struggled to get access

to ministers, decision makers,

the committees that were established

internally within government.

Externally,

they didn't have representation of

disabled people coming from a political position

and I What I mean by that is

it's very easy to fall into the trap of thinking about

disability and disablement

as an individual medicalized problem

which requires a medicalized response.

That's the dominant narrative that em, that comes out of social

and political

configurations within society.

That's why

the response was focused on

what's the value and the worth of saving this

individual's life based on their impairment and health conditions.

If you flip that and you say that

disability is

primarily a political issue,

it's disability.

Is the production of restrictions imposed upon you

which are unnecessary, and they're unnecessary because

you can reorganise society to

eradicate and destroy those restrictions.

The problem is that that we never had those voices

in those core influential decisions.

We were struggling to have our voices heard.

And when there was discussion about disability, it was, it felt

trapped

into

an individual and medicalized narrative.

So for me,

there was

there was this disconnect between

our representation, our priorities, our issues

and those who were

making the decisions.

I also think there was

I think it with the With the pandemic,

the poli. The political response was a was A

and even probably arguably the kind of social response as well from communities

across

the UK. But also across the globe

was this utilitarian approach, saying, What's the best

for the majority of people?

And

you know, I was exposed to that. People saying Well,

you know, we can't

keep the shops closed forever.

You know we can't keep people at home and all these questions about,

you know, we what we need to prioritise somebody's life.

And the problem is, if you get trapped in that narrative,

you become so consumed then

trying to determine

which life is better than others,

which life deserves support and which life doesn't deserve support.

And

for me, the frustration the anger comes from

saying, You don't have to have that conversation,

there's a the the the earlier question that we need to ask is.

Why have we

designed a system

which requires us to prioritise

one life over another?

Why do we have situations where

people are going in human beings? Lives are going in

in a crisis situation,

and the first question is to bring out

a clinical frailty score

and say,

this life meets this number.

So we're only gonna get this intervention.

for me,

it's

calling out, and I think this is what's really key for. The inquiry

calling out

the way in which

politics

and society and by society I'm talking about health responses. I'm talking about

health services, local government

and so on.

It's calling out that a utilitarian approach

doesn't work

and what it does, is it just reinforces a eugenicist approach

because there is eugenics

going on here.

The pandemic is an overt example

of a eugenicist society

which accepted that some lives do not matter.

And

I think that

the the the the the work that we need to do with the inquiry

and any response beyond the required because this is gonna have

continued to work for so many years

has to be combined with

the recognition that

we have always failed disabled people

in episodes of disaster

and humanitarian crisis.

And the literature is there.

We don't prioritise sale people. We don't prioritise

sale people's families.

Emergency services are not geared

to protect our lives

and they can be but the But the way we organise politically and economically

means that we don't prioritise it currently.

So for me,

the political response is is eugenicist

It failed to recognise disability as a political issue,

but also

we are going to experience crisis in the future.

There will be more pandemics in the future.

We are we haven't even

contemplated as a society

the implications of

climate change on marginalised communities such as disabled people.

There is gonna be so much emergency and humanitarian crisis

now and in the future,

and the danger is is that we'll have the same conversations

next year in five years and 10 years

where we say

we weren't prepared to support sale people

we strategically chose not to prioritise sale people.

So for me, the question is

when we think about

response to crisis,

how do we prioritise

the position of marginalised communities in that?

Because if your marginalised communities are

an example of overt forms of experiencing restrictions

and barriers

and deprivation and exclusion

and even exploitation, If you think about

how modernised communities were forced to go out

into spaces which are dangerous during the pandemic,

you need to start from the principle of how do you create

an emergency response

that protects those who have been most exploited and excluded

in society.

And then you use that as a way to rebuild and reorganise those spaces.

But as I said, the danger is is that people become so consumed

in their own survival

and they see it as a competition with others

that they that they just disregard it. And this is why, Yeah,

now, after after,

we've kind of come through this wave of

the pandemic because the pandemic isn't over,

we're just in the next wave of it.

The problem is

is that there is so much tolerance in our society

towards exclusion

and segregation.

You know, we have

exclusionary systems all around us.

We exclude so many people in our society

and on one hand you want people to come out and say, Let's change this

But you also just want people to call that out and say

Why is that happening in the first place?

But so many people don't do that and it's left to us

to do that.

for me, the social response is

it's deeply saddening.

But it also

kind of riles me up because I think

where is the collective response

from

all disabled people in society, from all our allies, or or

our potential allies

to say

we don't need to have it like this anymore?

And I think that's where the social response

needs to go

in order to think about

a different space

which is

gonna protect us

in times of crisis

and times of emergency situations,

which we either are aware of or we're not aware of,

but and and and I think that will create then the pressure on on the politics

for those who are engaged in decision making processes,

you know they are getting away with so much

when it comes to marginalised communities.

Because collectively, as a society,

we tolerate exclusion so well

and that's what needs to change.

Well said, Couldn't have said it better myself.

I just was like, um

yeah, it definitely took me on a A an emotional and a

kind of think, I don't know,

like a bit of a roller coaster thinking what we need to do It feels all big.

Um, what can we do individually,

um,

to kind of help

make these changes?

And is there anything else that you wanted to add about your experiences?

I think in terms of

in terms of what we need to do

for me, it come for me. It starts with

ensuring people know

what they should be entitled to,

and again, that's there's a danger in that, because

because of the pandemic, how easy it was to reverse

so many of the gains that we've made as disabled people

in terms of protections and rights and so on.

But the starting point for me is to say Well,

what are our current protections in this situation?

And are people aware of what those protections are?

So again, they don't have to ask. They can just say

this is what I'm entitled to

as a human being protected

on the basis of rights and policies. This is what I'll draw on because you have to

draw on

existing rights and policies

in the immediate situation because that's what gets you access

to services, that what gets you access to resources and I don't and I don't want to

focus all our attention on rights and policy.

But for me there's a strategic and pragmatic importance to say

as a community, are we individually aware of what we are entitled to

so that we don't put up

with accepting

an offer

or a response, which is well below what we should be expecting,

because that helps you then create the conscious awareness of of all this

and that leads me on to my second point, which which is individually,

we need to be consciously aware

the injustices that we're experiencing.

But we need to do it in a way

which, as sociologists we call

the sociological imagination,

and what that means is

taking your individual experience

or being aware of other people's individual experience.

But making sure that you are connecting that

with the broader political,

economic, historical,

cultural, social

arrangements in society

so that you say

well, when you're experiencing this form of deprivation

or exclusion

or discrimination,

that's not because of you.

That's because of how society has been organised politically, economically,

socially, culturally, technologically and so on.

So for me it's how do we, as individuals and as members of our community,

persistently

get people to think about the sociological imagination

to recognise

you as an individual? You don't need to internalise what you're feeling.

It's being produced by

these arrangements around you

because when you do that,

it leads me on to the third point,

which is.

You can then start creating those accessible and safe spaces

to propose the alternatives

because on the one hand

we want to identify the problems, and we've done this

for many years. We've done this in this video,

but you also want to create the spaces where you're saying,

what are the possibilities for change?

What can we experiment with differently

in terms of

the way we do things, the resources that we give people

the way in which that's managed and so on.

So for me it's it's a it's a combination of identifying the problem correctly,

and for me, that means

no longer taking responsibility for the unnecessary

restrictions imposed upon us,

recognising that they are being imposed upon us

by various forms of organisation in society.

And it's making sure that we all take responsibility

to come up with

ideas for the alternative

because as disabled people, we are best placed

to say

this is how you change things.

This is what you need to do differently

and everybody has a voice on this.

It's just that some voices are not listened to,

so we find the accessible and safe spaces.

We produce them ourselves with resources from others,

allies, people with with with responsibility and power and authority.

And we start to come up with the solutions of saying this is how we want things to be.

These are our ideas, you know,

As I said before,

the pandemic society was a way of disrupting and destabilising what's been

going on before that.

how do people want to organise their support

in a way which

meets their needs,

meets the outcomes that they've set,

that they want to do in that immediate

situation which will change over the life course

and

is designed in a way where

when a crisis does occur,

it doesn't reset back to zero.

It can. It can

accommodate and respond to

the various changes across your life

again for education. How do we organise education, where

all participation matters

and every voice is valuable?

And what's the point of education and knowledge and learning and so on?

for me, it's

the key thing is

recognising

injustice,

recognising that injustice doesn't have to happen

and

making sure that we are creating the spaces so people can say

this is what we should be doing

well, these are my ideas for what we need to do differently

and then just experimenting with them,

allowing people and communities and spaces

to do things differently,

give them resources to allow them to do things differently.

Whether that is organising

the community, whether it's

organising their response to a particular issue,

whether it's

building sustainable programmes of support and so on,

whatever it is whatever it is, what

matters to you

if it's not working for you,

how do we create the the the system

to allow ideas for change,

to be explored and experimented

and allow for that creativity to flourish?

Because as a people, we are

so creative

in the way that we find

ways to identify and

either disrupt or remove the restrictions that we experience,

and now it's not. There's an opportunity to say,

How do we take that creativity from our community

and then extrapolate it

the

decision making positions,

the

the the levels of governance, the levels of resource allocation

that are all over the ways in which we organise society?

How do we connect

that creativity of our community

with the broader changes and decisions that

are made about how society is organised?

So and that's why I would prioritise

Absolutely. Thank you so much for sharing. Do you have any final thoughts?

Um, anything else you wanted to share? I don't have any more questions, but,

uh, no, nothing for me. I just think that you know it.

It's it's been great to have a space where we, you know, can reflect on this

and you know, we we need We need so much more

material like this

because this, uh you know, not not just for making changes now,

but also as a form of kind of archiving. I think

you know, the final thing I'd say is

we need to constantly think about how do we archive

the conversations and the ideas that we've had

so that we can draw on this

in the in the future as well. So people can learn from this and

and dip into our knowledge and our experiences

as a way to make sense of

the future issues and considerations

and priorities that are going to be faced by by subsequent communities.

Absolutely.

It you you leave me with another task to do this.

I definitely feel like we need to have that conversation about,

um, how we archive this. Um,

but thank you so much. I'm gonna stop the recording there, if that's OK.

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Author

streetreporter

Post date

19/04/2023