Manifestos for the Future of Critical Disability Studies

Volume 1

Katie Ellis, Rosemarie Garland-Thomson, Mike Kent, Rachel Robertson, Katie Ellis, Rosemarie Garland-Thomson, Mike Kent, Rachel Robertson

• Publisher: Routledge
• Year: 2018
• ISBN:
  9781351053327
• Edition: 1
• Topic: Ciencias sociales
• Subtopic: Trabajo social

This collection identifies the key tensions and conflicts being debated within the field of critical disability studies and provides both an outline of the field in its current form and offers manifestos for its future direction. Traversing a number of disciplines from science and technology studies to maternal studies, the collection offers a transdisciplinary vision for the future of critical disability studies.

Some common thematic concerns emerge across the book such as digital futures, the usefulness of anger, creativity, family as disability allies, intersectionality, ethics, eugenics, accessibility and interdisciplinarity. However, the contributors who write as either disabled people or allies do not proceed from a singular approach to disability, often reflecting different or even opposing positions on these issues.

Containing contributions from established and new voices in disability studies outlining their own manifesto for the future of the field, this book will be of interest to all scholars and students working within the fields of disability studies, cultural studies, sociology, law, history and education.

The concerns introduced here are further explored in its sister volume Interdisciplinary approaches to disability: looking towards the future.

1 Introduction

Why manifestos, why now?

Mike Kent ,Katie Ellis ,Rachel Robertson and Rosemarie Garland Thomson

Why manifestos?

Manifestos provide a fulcrum for social change. They can take the form of formal manifestos, great speeches, books, pamphlets and now YouTube videos and even 140 character tweets. They provide a point of leverage around which activists can rally broader political and popular opinion to drive change. Examples can be seen in the Declaration of Independence of the United States with its then radical proclamation that it is self-evident that ‘all men are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty and the pursuit of Happiness’ (United States Second Continental Congress, 1776, para 2). Nearly one hundred years later, The Communist Manifesto presented another call to arms, this time urging the working class of Europe and across the world to rise up in a class war of ‘the oppressed against the oppressors’ with ‘nothing to lose but their chains’ (Marx and Engels, 1848). Both these famous manifestos were, despite their appeal to social justice, overt calls to war. Subsequent arguments for social justice have deployed manifestos with a less direct recourse to physical violence. In 1897 the National Union of Women’s Suffrage Societies published its manifesto Fourteen Reasons Why in support of women’s suffrage in the United Kingdom, eloquently summarised in point fourteen; ‘it is for the common good’ (National Union of Women’s Suffrage Societies, 1897, para 14). In 1963 Martin Luther King Jr. set out his manifesto for racial equality in his seminal I Have a Dream speech at the Lincoln Memorial in Washington (King, 1963). In this he argued that the unalienable rights outlined in the Declaration of Independence should be extended to all people in that country regardless of their race. Following the 1969 Stonewall uprising in San Francisco in 1971 the Gay Liberation Front launched its manifesto calling for equal rights for the homosexual and bisexual community, proclaiming:

To you, our gay sisters and brothers, we say that you are oppressed; we intend to show you examples of the hatred and fear with which straight society relegates us to the position and treatment of sub-humans, and to explain their basis. We will show you how we can use our righteous anger to uproot the present oppressive system with its decaying and constricting ideology, and how we, together with other oppressed groups, can start to form a new order, and a liberated lifestyle, from the alternatives which we offer.

(Gay Liberation Front, 1971, para 2)

The early UK disability rights movement was similarly driven by manifestos for change. The disability rights movement emerged in the 1970s and styled itself on these social movements around self-evident rights of equality, women’s rights, race, and sexual identity. Activists sought to create a common cause across people with disabilities to fight and overcome the discrimination they were experiencing. One of the crucial strategies deployed in this was the development of the social model of disability, famously articulated in the manifesto from the Union of the Physically Impaired Against Segregation (UPIAS) and the Disability Alliance in 1976. The Fundamental Principles of Disability states:

Our own position on disability is quite clear, and is fully in line with the agreed principles. In our view, it is society which disables physically impaired people. Disability is something imposed on top of our impairments, by the way we are unnecessarily isolated and excluded from full participation in society.

(UPIAS and the Disability Alliance, 1976, p. 4)

Michael Oliver coined the name for the model five years later (Oliver, 1981). As a field, disability studies, like other social justice movements, has straddled both activism and intellectual practice (Meekosha, 2004, p. 7). It is important to acknowledge that this has not been the case for all disability research trajectories. For example, Tom Shakespeare (2006) highlights the Nordic ‘relational model of disability’ as a comparison to the UK’s social model. This relational approach has three interrelated characteristics: disability is a mismatch between individuals and environments; it is situational as people are not necessarily disabled in every situation; and relative and arbitrary decisions are made about the cut off points for various impairment related definitions. Shakespeare acknowledges ‘strong similarities’ (ibid., p. 26) in both approaches but notes the connection between disability research and activism was not as strong in the Nordic model of disability research. Within this context, researchers were nondisabled and the evaluation of disability services was a strong priority.

While the distinction made in the English-language social model between disability and impairment may be difficult to translate into Nordic languages, both models recognise the social-contextual construction of disability. The UPIAS manifesto articulated an alternate to the dominant medical model of disability. Liz Crow (1996) described this model as centring on a medicalised definition of disability ‘a person’s functional limitations (impairments) are the root cause of any disadvantages experienced and these disadvantages can therefore only be rectified by treatment or cure’ (p. 3). This manifesto sought to draw people with disability together as a common group, and move the cause of the disadvantage they experienced from an atomised individual with a damaged body and in need of a cure to the place where it more accurately resides in the broader society and the physical and social structures constructed that disable people with impairments. As Crow notes, this social model then ‘opens up opportunities for the eradication of prejudice and discrimination’ (ibid., p. 3). Importantly, the manifesto, and the social model it articulated, also gave common cause amongst people with a wide range of physical impairments and their allies to work together to overcome this discrimination that they all experienced. By replacing the physically and politically atomised disabled individual conceived in the medical model with a group that crosses impairment types and allows for solidarity across the disability community, this provided a point of leverage that could be used to create a broad movement to call for change. It made the argument to extend the franchise articulated by the Second United States Congress to ‘all men’, the National Union of Women’s Suffrage Societies to all people regardless of gender, King to all people regardless of race, and the GLF to all people regardless of sexuality, to now include all people regardless of disability. In the US and Australia, civil rights approaches also embraced a manifesto rhetoric encapsulated by the slogan ‘nothing about us without us’.

Social change and the academy

Like disability activism, each of these social justice movements has developed a parallel and overlapping academic discipline, in the form of women’s, feminist and gender studies; ethnic, race and critical race studies; and Queer, sexual diversity and LGBT studies. As both the disciplines and activism have evolved over time in these areas they have become increasingly nuanced in their approaches, and debates and conflicts have emerged within both activist and intellectual practice. This can be seen perhaps most prominently in the conflicts that emerged across the first, second and third waves of feminism (see Kisner, 2004). Similarly, each field has moved beyond the confines of a specific marginalised group to explore both how these groups can overlap with each other, often compounding disadvantage for people who fall within two or more of these and other marginalised groups in society, and also the nuances and differences within each group that require their own focused attention. Disability studies, while one of most recent of these organised movements and academic fields, is following a similar trajectory.

Critical disability studies

Other important areas related to disability have also, in the past, been excluded or overlooked by disability studies and disability activism, including areas related to sexual identity, gender, race and the Global South. While taking its inspiration from civil rights fights addressing these same topics, disability studies has been criticised for not engaging with the spaces where these concerns intersect. Partly as a response to this is the emergence of critical disability studies, described by Goodly (2016, p. 8) as a ‘location populated by people who advocate building upon the foundational perspectives of disability studies whilst integrating new and transformative agendas associated with postcolonial, queer and feminist theories’. The goal of critical disability studies is to question our existing notions of disability and to interrogate how these have become a part of the academic approach towards the field (Vehmas and Watson 2014, p. 639). Critical disability studies ‘start[s] with disability but never end[s] with it: disability is the space from which to think through a host of political, theoretical and practical issues that are relevant to all’ (Goodley, 2011, p.157).

Why Now?

The key to understanding contemporary disability studies lies in its history and the debates and tensions occurring now as the discipline moves forward. Paul Longmore (2003), in Why I Burned My Book and Other Essays on Disability, identified two phases in first the creation and then the evolution of disability studies. Rachel Adams (2013) contends that there is now a third phase, one in which the ‘tensions and conflicts’ within the field are beginning to be discussed (p. 496). With social media providing a place for academics and activists to enter into productive conversation, these tensions and conflicts are taking place on an international platform.

Manifestos are also changing their configuration. From pivotal speeches, pamphlets and declarations manifestos are evolving to new forms and formats that are able to actively involve a wide variety of different participants including members of oppressed groups and their allies to raise awareness and drive change as has been notably demonstrated through the use of the #metoo hashtag across different social media platforms to raise awareness around the prevalence of sexual assault and harassment (CBS News, 2017; Manikonda, Beigi, Liu and Kambhampati, 2018), including critiques of the position in these debates of people with disabilities (see Strike, 2018; Smith, 2017; Tremain and Hall, 2017).

This point in the both evolution of how manifestos can be expressed and the academic discipline is an excellent time to question the way forward. So we invited academics, both prominent in the field and new and emerging voices, activists, and disability artists to attend a symposium in Perth, Western Australia to discuss trends in disability theory, the evolving research agenda, interdisciplinary work, connections with disability activism, and how to build a stronger disability research culture in Western Australia. Perth, Western Australia is often described as the most isolated city in the world, a description often applied to the position of disability in other academic disciplines. This seminar led to heated debate, helped establish stronger connections between disability activists and academics and eventually led to a wider call throughout the world for academics, activists and artists interested in disability to share their manifestos for the future.

Editing this book has not been a typical editorial experience. We did not enter the project with one single vision for what the future of critical disability studies should be. Instead we threw it open to the contributors to outline their vision, to focus on their key concerns. However, a number of common thematic concerns emerge across the book such as digital futures, the usefulness of anger, creativity, family as disability allies, intersectionality, ethics, eugenics, accessibility and interdisciplinarity. Yet our contributors who write as either disabled people or allies do not proceed from a singular approach to disability, often reflecting different or even opposing positions on these issues.

The manifestos

This volume is organised into three parts. The first of these, ‘Human variation across family and community life’, has six chapters that explore the contours of the field. Rosemarie Garland-Thomson opens the part with Chapter 2, outlining the books she considers to be canonical in US humanities focused disability studies before calling on theorists and practitioners to embrace a sense of wonder. Chapter 3 by Freeman Loftis follows, exploring the past and future of the neurodiversity movement and the public performance of autism, particularly in a professional and higher education context. She explores tactics deployed by the neurodiversity movement that could be used to further legitimacy and recognition while at the same time celebrating Autistic culture.

In Chapter 4, Torres, drawing on the work of Cornel West and Hill Collins, calls for the creation of greater cooperation and integration between the academy and disability activists to create an ‘industry’ of activist to further the cause of disability rights. In Chapter 5 Fernandes and Robertson draw on their roles as mothers of children with disability to offer a collaborative, performative and evocative autoethnographic text in support of a manifesto urging critical disability studies to enter into conversation with feminist maternal studies to unpack the role of motherhood as institution, experience and subjectivity. Skoss continues this conversation in Chapter 6, charting the path of parenting a child with a disability through the different organisations and the challenges of ‘navigating the system’, with a manifesto to make these systems more accessible and integrated for their clients. Concluding Part I, Castrodale explores in Chapter 7 the theses of power, violence, and space through the intersection of mad studies and militarism.

Part II of the book, ‘Media, technology and design’, opens with Goggin’s Chapter 8, a manifesto on technology and cultural futures, in which he argues against technology as some kind of ‘manifest destiny’ for disability, instead focusing on th...