Inclusion Now 67

Miro Griffiths: “Young people’s voices matter and should be recognised with authority and with influence”

ALLFIE’s ‘Our Voice’ project members interviewed Dr Miro Griffiths on youth involvement in Disabled People’s Organisations, and the intersection of academia and disability activism.

Miro Griffiths, smiling, using a wheelchair headrest

Dr Miro Griffiths is a Disabled person and identifies as a Disabled activist. He is involved in disability activism through both academic research and policy advocacy, with a particular interest in empowering Disabled young people in their activism journeys. As a group of young Disabled people, we spoke to Miro about how disability academics and activists can help us amplify Our Voice.

Background: A journey into disability politics

Miro’s interest in disability politics began in his early teens when he came across ideas around personal assistance and self-directed support. These introduced him to the social model of disability, which sees Disabled people as being Disabled by inaccessible environments and not by their impairments or differences. Before then, Miro’s experiences of loneliness and isolation led him to think of disabilities very differently: “I assumed that it was my fault and my responsibility that I couldn’t do things in society.

This was despite his parents being “quite passionate about rights and justice” and acting in ways reflective of “aspects of the social model”. For example, they insisted on sending him to mainstream education, against the “advice” of local authorities. Their progressive ideas would become one of the important sources of support Miro had going into disability activism as a Young person:

“[My involvement in activism] came down to my parents a lot. They aren’t Disabled people. They were never exposed to disability until I was born, and experiencing disablement as a family was quite new to them. As soon as I got my diagnosis, my family was trapped in journeys of doctors telling them it’s ‘tragedy,’ ‘suffering,’ ‘medical,’ and all these things. They had very low expectations of me because medical professionals told them so. But credit to them, they always encouraged me to pursue [what I want]. It was my parents who suggested I apply for the things I did to be linked with other Disabled people and civil activists.”

These external connections to Disabled people and activists turned out to be crucial in Miro’s entrance into disability politics:

“When I was about 17, I replied to a call for Disabled people to be advisors to the UK government. [Back then,] a lot of my experience was deeply personal, and I couldn’t talk about disability broadly – as in what was happening to us as a community. Bizarrely, I was accepted onto this network. I can still remember talking to great activists, campaigners, and civil society organisers using the language I assumed we needed to use – referring to myself as the problem and talking about my life in medical ways.”

“But people like Michelle Daley, Clinton Farquharson, and Tara Flood would help me start using language more rooted in our politics of justice and liberation. They started to talk to me in much more accessible ways and explained the social model in a way I could understand. That was the starting point of my evolution as a Disabled person, where I progressively recognised disability as a political and social justice issue requiring radical changes in how society is organised.”

Miro said these links to other Disabled activists are essential to all Young Disabled people seeking to begin advocacy, as they provide support, inspiration, and influence:

“[Networks] were key for me because growing up as a Young Disabled person from a family that’s not fully aware of disability politics, it’s quite easy to be trapped within the traditional charities. They tend to have a tragedy-based or medical narrative, deeply toxic to our liberation. It was imperative that I got the exposure [to networks of Disability activists] and started to be understood as a political individual. By talking about disabilities as a social justice issue, I could then begin to pull away from these traditional charities that had been talking about my life in terms of suffering and tragedy.”

Disability in academia

Whilst his activism career began with policy advocacy in the UK and across Europe, Miro realised that he “quite enjoyed working in academia” when he started doing a Masters degree in Disability Studies. He then continued to pursue a PhD in the field and is now a research fellow at the University of Leeds’ Centre for Disability Studies. We asked Miro to define the discipline:

“Disability Studies is a field of study focusing on the social position of Disabled people in society. It was started by Disabled people who started to recognise the need to think differently about disability. It’s a response to how much of the research and the public assume disability is a medical issue and a problem of the individual – which is why lots of research focuses on correcting Disabled bodies through cures and rehabilitation.”

“As a disability scholar, I focus on what Disabled people are experiencing. I want to look at the political, economic, cultural, social, technological, and all the arrangements around us that form our world. Because the individual is not the problem. It’s the way we’ve organised society that causes these experiences, which are often quite negative, hostile, and discriminatory for Disabled people.”

The discipline is also quite diverse, as it must explore how disablement is experienced and created in all facets of society. Miro explains you can be a Disability Studies scholar whilst also being in another field of study:

“You’re trying to bring together [different disciplines] to make sense of your work and what you’re doing around disability. That’s why at the University of Leeds’ Centre for Disability Studies, we have a collection of researchers based in the same university but not all in the School of Sociology and Social Policy like me. We have engineering scholars who focus on understanding and developing assistive technology [and] colleagues who are inclusive educationalists. Ultimately, they’re all committed to thinking about the barriers that Disabled people face through the environment that hasn’t been adapted to meet their needs.”

But an issue Miro sees in Disability Studies is that scholars are sometimes very disconnected from Disabled communities and believe in a separation between activism and academia:

“I’ve been told by fellow activists and people I thought were friends that I ‘sold out’ and was leaving activism, as soon as I became an academic. [But] I still class myself as an activist because I think activism is a broad concept and needs to be recognised as such. We’ve all got different roles in this journey. Some of us are radical activists causing disobedience and disruption and demanding change immediately. That is needed, but at the same time, we need people who are creating the evidence to back up claims made by radical activists. We also need policymakers who make tweaks to prepare the ground for the broad divisions we’ll have in the future. We’re all connected in trying to push forward.

“An internal reflection for academics is asking yourself how your research is meaningful and useful for people in society. How do you evidence that what you’re working on has led to some change in the lives of Disabled people – whether through organisation or legislation and policy that supports Disabled people? I made a decision very early on that any research project I work on must have relevance to DPOs (Disable People’s Organisations) and Disabled activists. I’ve got many colleagues working on theories and concepts about disability that shape our way of thinking, but their work has to become accessible to activists and communities who’ll use their research and ideas to make change.”

Closer connection and collaboration between disability scholars and Disabled people is also mutually beneficial. Not only does the disability community benefit from research in their advocacy, as a Disability Studies academic Miro also sees the constant opportunity to meet new people and learn about their ideas and what matters to them in inclusion and accessibility as one of his favourite parts of his job:

“I’ve spoken to individuals ranging from Young Disabled activists in Russia, who are resisting and getting out of institutions, to people in Ireland who are setting up independent living networks and campaigning to ensure Disabled peoples’ rights to personal budgets. Activism is like an explosion – it’s just sparking everywhere. It’s repeatedly exploding and going off in different directions because you’ve got all these new voices coming through with new ideas and reactions to things happening in the world. I’m so keen on capturing our history and documenting the different ideas and voices coming through our activists’ networks.”

Nurturing new Disabled voices through inclusive education and activism

Another of Miro’s favourite parts of his job is having the opportunity to teach, hearing what people want to do and where they go on to:

“A lot of people who study disability tend to be Disabled themselves. They’re trying to make sense of their experiences and use research to broaden their arguments and justify their claims. When talking to students, it’s lovely to hear their passion for why they want to engage in this topic. They talk about what they want to do with their studies – working with or setting up DPOs, becoming a policymaker, campaigning to be in their countries’ governments, and so on. It’s also great to see the link and history of people’s and activists’ ideas and their studies. I’ve taught somebody who emailed me five years later to tell me they began working for access to self-directed support for Disabled people in the South Korean government after finishing the course.”

But Miro knows education isn’t accessible to many Disabled people, and has been committed to inclusive education since he identified as a Disabled activist:

“I’ve been very fortunate to have opportunities to talk about the importance of inclusive education through my teaching. At the moment, we’re just launching a new Masters in Disability Rights in Inclusive Education, which will have dedicated modules to look at concepts and strategies people have used to improve inclusivity in education.” 

“I’ve also had the opportunity to be a board member of the Alliance for Inclusive Education (ALLFIE). In fact, one of my favourite projects was with ALLFIE, where I visited different schools in different countries – such as France, Italy, and Iceland – to explore different ways inclusive education was articulated. When discussing inclusive education, my starting point is not to justify the inclusion of Disabled people in the world as it currently is. Because that’s not inclusion – it’s integration at best.”

“As activists, we must continuously push the fact that you can’t justify segregated education – just like how you can’t justify segregated housing, living, etc. The tolerance to segregation has to be questioned until we have enough people there to move us towards a different approach. The endpoint should not be just about making schools accessible. We must rethink how education is understood, practised, and purposed. Our role as activists is to change how society is organised to accommodate all forms of participation. That’s what we’re doing with inclusive education – or at least that’s what I’m doing.”

Just like he cares deeply about connecting and supporting his students and making education inclusive, Miro is also invested in empowering Disabled Young people as activists and making disability politics more accessible. He recognised three main issues hindering youth participation in disability activism. The first is the inadequate support Young people have in accessing political platforms and activities: 

“It’s really hard to be an activist if you don’t have the necessary support. [We need to] ensure that Young Disabled people have the support required to participate and have access needs met, whether that means personal assistance or various forms of attending and engaging in organisations. For example, many Young people would tell me their local DPOs only meet during office opening hours when they have to study. So, it’s about flexibility and having alternative forms of participation that reflect the different ways we all live our lives, communicate, and participate.” 

“Opportunities for Young people to have a visible presence within organisations are also key here. I see lots of opportunities with exclusionary parameters, like requiring 15 years of experience. Many people do not have that experience but have great ideas and need opportunities to share them.”

Even with Young people already involved in DPOs and other activism channels, Miro said their views are often discounted in various ways:

“An issue Young people mentioned during my research was that when they bring up an idea, older and more established activists would say, ‘No, you can’t have that view. This is my vision, and you need to align with it.’ That’s upsetting and harmful for Young activists trying to find themselves in their activism and say what’s important to them. They may be new to disability activism, but they aren’t necessarily new to the ideas they’ve been working on or their existence as Disabled people.

In addition to having their views disregarded altogether, Miro also noticed that Young people often cannot express opinions on issues other than those strictly about Disabled youths.

“When I was doing my PhD research across Europe, a similar issue always came up [where] Young people are telling me they were fed up with only being invited when it’s to give a Young person’s perspective. For example, they can have views about inclusion and accessibility that aren’t necessarily just from a Young person’s perspective. Their views are relevant to different conversations going on in different spaces. 

“This is why you need to have a twin track. Whilst you have opportunities for young people to self-organise and be visible as a young people’s network, you need mechanisms where young people can inform and influence broader organisations. The ALLFIE model is quite important here, [as it’s a system of] having a dedicated voice on youth that informs and influences other activity and work of the broader organisation. There can be people dedicated to youth projects or have a youth focus, but no one should be trapped in a youth-related role if they don’t want to be. Young people should be allowed to be involved in all aspects of the organisation – management, strategy, campaigns, mobilisation, etc. They’re not there because they’re young. They’re there because they have great ideas. Young people’s voices matter and should be recognised with authority and influence – as much as everyone else’s voice.”

Young people and the future of disability activism

When asked how DPOs and the disability activism community can do better in empowering Young people, Miro made two recommendations: 

“It starts with organisations recognising that they can’t be tokenistic with their engagement with young people. We need to hold them accountable and ask, ‘Are you doing enough to give young people opportunities to take part in the organisation?’ 

“Another important point is that our projects must become more intersectional. The key thing for me regarding intersectionality is that you can’t compartmentalise or separate a ‘youth issue’ from a ‘Disabled person’s issue.’ You’re looking at the entanglement between the two and the unique experiences born from that. It’s the messiness that creates the experiences we want to focus on and talk about. Intersectionality is extremely important in social justice and inclusion. We have to recognise that within the already marginalised Disabled people’s community, we have further marginalised communities whose voices are ignored and silenced.” 

But also, many Young activists are talking about intersectionality within their activism. A lot of the Young Disabled people I’ve spoken to across Europe say that whilst they focus on disability, it isn’t their only focus in terms of creating social change. They may also be interested in climate issues or issues of sexuality and gender, and they’re combining the two.

“I think we’re now at a point where we need to talk about an accessible and inclusive society for everyone. ALLFIE is a prime example of that. It’s talking about inclusive education and using disability as an example to show injustices in the system, but it’s also articulating that the alternative isn’t just for Disabled people. It’s to say, ‘We can rethink education so everybody is welcomed.’ That’s where we need to move the rest of disability activism towards – thinking about our work as producing a world accessible to everybody.”

In terms of the future of disability activism in general, Miro thinks it all comes down to continued resistance from the Disabled people’s community:

“The future has to be open to resistance. As a Disability Studies scholar, I follow the approach of philosopher Michel Foucault. One of the arguments in the Foucauldian approach is that you don’t start with power – you start with resistance. Because resistance is the first thing you’ll experience before you get to power, it is always possible. What that means for us is that there’s always an opportunity to fight for things to be done differently, present an alternative plan, and come up with an alternative justification because we can’t tolerate exclusion and exploitation of Disabled people.