Miro's story

it? Uh, yeah. Yeah. So could you tell me a little bit about yourself? Yeah. So, uh, my name's Miro Griffiths

I 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? So 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, I 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 by the responses, whether that would be state or, um, health services or even economic as well. So 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? So 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 so 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. So 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 a 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

So 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 I 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, as a person, I think a post pandemic society is an attempt to 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 So 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 of 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. So 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 is 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 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 a 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 on 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

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

So for me, the social response is 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 of 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. So 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? So 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 to 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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