1. Opening Thoughts – on Writing in a Time of Conflict
We faced a dilemma when writing this editorial. We wanted to celebrate the important work of our authors (and all those involved in bringing this edition to publication); and recognise that each article, albeit in different ways, explores ideas, programmes, policies or practices that promote social justice and inclusion for disabled people. Yet whilst celebrating these academic contributions and recognising their importance, we also wanted to convey our growing personal unease with a comment that we made in our first editorial. We stated that as researchers and authors we believe that there is ‘power in our pens’. We continue to believe this. But, as we turn on the radio or TV and hear or watch the news from around the world, we are continually confronted with the limits of that power – and ask ourselves what power our pens really have against tanks and bombs and guns? Against destruction, misery and death? At such times, unequivocal belief in ‘the power of the pen’ can start to feel naïve.
As we write this editorial, millions of people are fleeing Ukraine – adding to those who have fled in recent years and continue to flee from conflicts elsewhere – for example, in Syria, Venezuela, Somalia and Myanmar. It is a terrible fact that the conflict in Ukraine is one of five or six ‘major wars’ currently taking place around the globe; and amongst over forty ‘wars’ or ‘minor conflicts’ (minor only in their classification, not in their human impact). We are reminded of Robbie Burns’ famous lament that: ‘Man’s inhumanity to man, Makes countless thousands mourn.’ On our minds are all the victims of war, of ‘man’s inhumanity to man’. But we are especially thinking of the disabled people in armed conflict zones, who are facing a ‘crisis within a crisis’.
Reports are starting to emerge from Ukraine of disabled people being over-looked and excluded from safety and relief efforts. Sadly, this is not surprising. Around the world, from conflict to conflict, history repeats itself. Eloise Barry writes that ‘Many disabled Ukrainians are more vulnerable to Russian attack, while also at greater risk of abandonment, violence and discrimination within their own communities’.*1 How terrifying it must be to be at the receiving end of ‘man’s inhumanity’ not only from an external force, but also from within your own community.
Barry also reports that grass-roots disabled people’s organisations are mobilising to support disabled people in Ukraine.*2 She reports that one such organisation – ‘Fight for Right’ – has already helped 400 disabled people flee the country. Such acts of solidarity, agency and bravery should be recognised and honoured. Yet whilst the acts themselves can only be commended, the circumstances that have made them necessary cannot. Neither can the cost and consequences for those involved.
Narratives that ‘celebrate’ the self-organisation of disabled people at times of any type of crisis – whether natural or human-created – are fraught with risk. The self-organisation of disabled people should not be viewed as a convenient solution or ‘a blessed relief’ to governments or other relief agencies at times of crisis. Working with disabled people to find solutions will always be vital. But disabled people and their organisations should not be expected to be responsible for protecting and assisting their peers, nor be expected to work alone in dire circumstances. For one thing, few if any grass-roots organisations can hope to meet the needs of the number of disabled people impacted by major crises. Current estimates are that in Ukraine, for example, there are some 2.7 million disabled people.*3 Further, the potentially heavy price, from exhaustion to injury or death, that rescue-and-relief volunteers who are themselves disabled are paying, cannot and must not be forgotten.
Nujeen Mustafa, disabled woman, author and refugee from another on-going ‘major war’ – in her case the conflict in Syria – described her life in war-torn Syria as being like living in a ‘real horror movie’.*4 Sadly, the international community has been slow to recognise the position of disabled people in conflict zones. It was only in 2019 that the UN Security Council adopted a landmark resolution on protecting and assisting civilian disabled people during armed conflict.*5 Further, critics suggest that this resolution failed to recognise, adequately, that amongst disabled people there are groups that are at heightened risk, for example disabled children, whose families often have to make the nightmare split-second decision between abandoning their children in order to flee to safety, or remaining with their child and risking injury or death.*6
Academia has started to investigate the experiences of disabled people during times of armed conflict – but we believe this issue has yet to be given sufficient and widespread attention. For this reason, over the course of the next three editions of the IJDSJ we will be reaching out to disabled people’s organisations and allies working in this area and inviting them to send us pieces – short or long – in a variety of formats including human rights bulletins, personal narratives and think-pieces. The IJDSJ Editorial Executive and Board will expedite these through the review process to ensure that they are published swiftly. We will do our very best to ensure that these pieces are shared widely and prompt useful conversations about what needs to be done and what can be done to ensure that disabled people are not forgotten during armed conflicts, and that they are consulted about how best to ensure that they are assisted and protected at times of crisis. There will be a time and need for more theorising on issues such as the relationship between disability and violence; disability and ‘vulnerability’; and disability and the politics of mourning. But we hope that the pieces we publish over the next several editions of the IJDSJ will prompt a different type of response from academia: a more immediate focus upon applied research that seeks solutions to the problems that disabled people face in conflict zones and as refugees. If we seek those solutions and use our skills as writers to communicate our proposals clearly and persuasively, then perhaps we will have demonstrated that there is truly some ‘power in our pens’.
2. Introducing This Edition
We now turn to the content of this issue of the IJDSJ, which includes four articles and one book review. The authors’ disciplinary backgrounds and specialisms are refreshingly diverse, as are their geographical locations. We are also delighted that this issue, like the first, includes pieces from senior academics, early career researchers and disabled people well known for their contributions to activism as well as academia.
In the first of the articles, ‘Disability, Justice and Freedom as Non-Domination’, Marie Sépulchre considers the potential of republican theory for rethinking the issue of social justice for disabled people, indeed for all people. She begins by interrogating disability rights and asking why it is that they appear to be so vulnerable to political whims and societal backlash. Her answer – that it is because they are all too often inflected by a charity-discourse – is persuasive. Marie then proceeds to consider whether a republican concept of freedom might provide a more robust basis from which to defend disability rights than the more often employed ‘distributive justice’ perspective. For her, contemporary republican theorising, which understands freedom not only as freedom from interference, but also as absence of domination, has the potential to advance inclusion for disabled people.
Marie is careful not to adopt a republican concept of freedom uncritically – and, in our view, rightly so. She points to the assumptions of authors, such as Philip Pettit, that citizens must be able to make and enact choices in order to be free. She recognises the inherent ableism in the idea that this ‘ability’ or capacity of individuals rests upon their mental and physical characteristics. Instead, she proposes, the ‘ability’ of individuals to make and enact choices would be better understood in terms of their access to necessary, enabling resources (support). Here, Marie argues that republican approaches which recognise the inherent vulnerability and dependency of all members of our societies are useful, insofar as they stress the need for adequate distribution of resources. Nevertheless, she also emphasises that, whilst it is vital that individuals have sufficient resources to enjoy their freedom, there is a risk that the distribution of such resources becomes part of a system of domination (governance). Thus, resources must be allocated in a non-dominating way.
Marie’s article is thought-provoking. It sets out an agenda for further research and theorising in this area. She argues that it would be productive for theorists in Disability Studies to revisit questions including: (a) how we might understand the character of the domination faced by disabled people in the private and public sphere; (b) which state interventions minimise domination of disabled people most effectively; and (c) whether and if so how the UN Convention on the Rights of Persons with Disabilities (CRPD) operates as a protective mechanism against domination. Her article contributes to a rich vein of work that might be termed political sociology perspectives on disability. Such research continues to ask profound questions about the relationship between individuals and societies, freedom and democracy, governance and resistance.
The second article, by Prayathna Kowitz, is entitled ‘Spivak and Rethinking the Agency of Disabled Children’. Here Prayathna draws particularly on the work of Gayatri Spivak to critique the agency of disabled children through the lens of Subaltern Studies. She applies the techniques of ‘affirmative sabotage and deconstruction’ to critique article 12 of the UN Convention on the Rights of the Child (CRC). Paragraph (1) of this article requires States to ‘assure to the child . . . the right to express [their] views freely in all matters affecting the child . . .’. Prayathna draws attention to the problematic restriction of this right − to a child ‘who is capable of forming his or her own views’ − and the power granted to the arbiters of the unhelpful binary that the article sets up, between children who are regarded as possessing relevant capacity and children who are not. She argues that, like Spivak’s ‘subaltern’, disabled people – and disabled children in particular − are marginalised and denied agency, all-too-often being spoken for instead of having the right to speak and be listened to.
Prayathna also reminds us that Postcolonial Studies and Disability Studies have tended to operate in separate spheres or silos, despite the evident potential for mutual enrichment. In drawing upon both fields, her article adds to the surprisingly small body of work that makes valuable connections between the two. She highlights the importance of sensitivity to context in Disability Studies. Disability-related debates or research findings based on Global North contexts (such as those addressed in the following two articles) must not be inappropriately imposed on Global South contexts or unquestionably assumed to be applicable to them.
In the third of the articles − ‘Independent Living as a Counter-Narrative: A Work of Resistance and Repair’ − Alison Tarrant analyses selected documents published by the UK disabled people’s movement. She draws on this analysis to reflect on the way in which the concept of ‘independent living’ is used as a ‘narrative tool’ by disabled people to resist dominant conceptions of disability and generate ‘repaired’ social identities. These identities entail a rejection of dominant narratives of otherness, deficiency and dependency, and recognise the agency of disabled people, thereby making liberation possible. In this way, Alison argues, the idea of ‘independent living’ has been used to affirm and enable claims for freedom, equality and social justice – based on participation, inclusion, choice and control.
Alison’s article includes an interesting discussion of the challenges associated with translating this idea of ‘independent living’ into law and policy. While such initiatives have the potential to be immensely valuable, there are risks that its role as an ‘oppositional’ device will be overlooked or even co-opted. She also includes a thought-provoking reflection on the potential role the CRPD might play in such translation processes.
The fourth and final article in this issue is ‘Quick Trust and Slow Time: Relational Innovations in Disability Arts Practice’ by Bree Hadley, Eddie Paterson and Madeleine Little. Disability arts have tremendous power and potential to promote and strengthen social justice for disabled people – by highlighting and challenging the injustice inherent in disabling attitudes, structures and systems and provoking imaginings of alternative ways of being and doing. This potential will be fulfilled only if the arts industry itself finds effective ways of including disabled artists and recognising the value and importance of disability art. It is these social justice concerns to which this article responds.
Bree, Eddie and Madeleine present findings from their ‘Disability in the Performing Arts in Australia: Beyond the Social Model’ project, better known as ‘The Last Avant Garde’ project. Through a series of workshops with disabled artists from around Australia, they gathered valuable information about the experiences and insights of such artists. Drawing on this data, they conclude that efforts to include and support disabled artists have tended to focus on issues of logistical access (relating, for example, to the provision of accessible infrastructure, sign-language interpretation, etc.) and issues of ideological access (relating broadly to content and language). While such issues are unquestionably important, Bree, Eddie and Madeleine argue that so too are methodological issues − relating to how trusting collaborative and inclusive relationships and environments are built – and that insufficient attention has to date been given to achieving ‘methodological access’. This entails embedding disability culture – including dimensions of relational space and time that may differ from those characteristic of the mainstream arts world − in training, rehearsal and production processes. This in turn involves recognising that disabled artists frequently have alternative ways of collaborating and communicating through which to enter into safe, trusting and creative relationships. Their conclusion − that ‘quick trust is possible through the relational innovation of slow time’ and that ‘the onus is on all of us to . . . recognise how we can start building new methods, which have the capacity to create safety and trust for a wider range of artists, as part of the path to a more inclusive industry’ – is one which has relevance far beyond the arts sector and which, we are confident, will resonate with researchers dedicated to inclusive methods and other readers working in a range of fields, including inclusive employment and education.
The book reviewed is More than Medals: A History of the Paralympics and Disability Sports in Postwar Japan by Dennis J. Frost – and the reviewer is Nagase Osamu. Like the authors of the final article in this issue, Nagase begins by drawing readers’ attention to the topic of article 30 of the CRPD – the right to participation in cultural life, recreation, leisure and sport – and its relevance for social justice. Nagase describes Frost’s book as ‘an important contribution to the quest’ for understanding how disability sport – particularly the Paralympics – can influence and promote wider societal inclusion. He identifies, as one of the book’s strengths, its multidisciplinary approach – the fact that it draws on Japanese Studies, Disability Studies and Sports Studies. Another valuable aspect of the book, he suggests, is its international viewpoint, which foregrounds Japan’s engagement with global developments and includes some coverage in the English language. Further, and unusually for a book focusing on disability and sport, a high profile is given to issues of law and policy and to the implications of Japan’s hosting of early Paralympic competitions and its enactment of legislation relating to disability equality and accessibility. Particular attention is given to the relationship between Paralympics on the one hand and accessibility and awareness, particularly of the social model of disability, on the other. Nagase’s final paragraph cannot fail to inspire readers to do what they can to access Frost’s book − he says:
More than Medals is a meticulously-researched book with rich information, including interviews with key people and literature reviews, deep analyses, and powerful insights. It is very much readable as well. For me, this book has been a source of great delight.
We hope that this second issue of the IJDSJ will, to borrow Nagase’s phrase, be a source of ‘great delight’ to you, our readers! It continues to be a delight to the IJDSJ Executive Editors that this new journal is receiving such interest and support from a global, interdisciplinary community.