Moving Beyond Boundaries in Disability Studies

Rights, Spaces and Innovations

Michele Moore

• Publisher: Routledge
• Year: 2013
• Print ISBN: 9780415627252
• eBook ISBN: 9781135743031
• Edition: 1
• Topic: Education
• Subtopic: Education General

What challenges are posed by changing transnational trends, agendas and movements that affect disabled people's lives, and what can disabled people, their representative organisations and their governments do to advance the agenda for self-determination and inclusion? This book draws together the writing of academics and activists to depict the experience and perspective of disabled people in relation to a range of contemporary social changes, with a focus firmly on ways in which disabled people and their allies can act to counter disabling policies and practices.

Throughout the book there is an emphasis on disabled people's own voices and activism as the critical driver of theoretical critique and practical change. Chapters address a wide range of cultural, institutional and personal arenas to explore and contest the boundaries that disabled people seek to move beyond, from cross-border labour movements in Korea to experience of day services in England, from continuing and long-lasting realities of wars in Lebanon, Cambodia and Somalia to the beauty of harmony in Navajo traditions for understanding disability, from collective activism to individual participation in the Olympics.

This book is recommended reading for students, researchers and activists interested in Disability Studies and is directly relevant to policy makers and practitioners in a position to reshape rights, spaces and innovations in response to the priorities disabled people feel and articulate are important for their lives. It was originally published as a special issue of Disability & Society.

Foreword

This book reproduces papers originally selected by Executive Editors for a Special Issue of the journal Disability & Society (Issue 26.5, August 2011) entitled ‘Disability: shifting frontiers and boundaries’. It includes 11 powerful articles, 10 following the structure of traditional academic papers and one comprising a shorter Current Issues piece. The latter piece of writing stimulated protracted discussion on The World Report on Disability, launched in 2011, which continues through subsequent volumes of the journal affirming the commitment of Executive Editors to keep open conversations in Disability Studies no matter how difficult these are. Throughout the pages of the journal the reader will routinely find challenging and contentious discussions concerning disability and society. This book showcases the compelling significance of some of this work for an international readership interested in human rights, discrimination, definitions, policy and practices and other determinants of the experience of people with impairments across the world.

In this collection, contributors add fresh insights to claims that have long been at the heart of thinking within the journal offering a wide range of cross-cultural gazes and perspectives. They focus on social issues and human rights, frequently contending with policy intentions and practical outcomes that block realization of the entitlements of disabled people. Each paper engages with the importance of raising voices of disabled people themselves, holding self-expression and self-determination as central to the process of advancing entitlement and inclusion. The book is therefore tremendously important, enabling as it does a new positioning for a body of work that has unearthed and represented research evidence concerning disabled people's lives that is of ongoing global significance.

The collated papers represent the work of academics and activists who, through their research and writing, make clear commitment to reconciling issues of social justice and exclusion. Their contributions provide contextual spaces which reveal and seek to unpack the complexities of moving beyond boundaries and borders — as constituted in a myriad of ways — to expand understanding of disability; seeking to advance new insights and understandings, and exposing ongoing and changing matters of local, national and international concern. The work presented constitutes a useful and vivid resource for understanding the relationship between disability and society in the context of global changes faced by disabled people in the 21st century.

Samantha Wehbi's work seeks to get to grips with the relationship between funding practices and disability rights activism in the context of war through examining grass roots resistance in Lebanon. Important questions which command further reflection are asked, such as: Whose interests do funding practices serve? Who does war relief funding reach and what purposes does it serve? What interests enable funding practices to oppress disabled people and how can these be challenged in order to safeguard disabled people whose lives are disrupted by war and conflict? Mansha Mirza's paper extends discussion of the conditions of disabled people's lives shaped by the continuing and long-lasting realities of war examining disabled people's access to cross-border mobility. Mizra takes for comparative purposes, resettlement experiences of Cambodian and Somali refugees who encounter and must circumvent a myriad of obstacles to resettlement. It becomes clear that impairment is not the sole determinant of discrimination experienced by disabled people dispersed into different countries through conflict or otherwise displaced. Clara Straimer's paper expands understanding of ways in which disability is always located within a complex set of relational, situational, cultural and political conditions considering movement across borders by examining legal and discursive perspectives which inform movement of disabled people seeking asylum. Her analysis exposes changing boundary structures, procedural and policy barriers and regulations which fail to afford protection and assistance to disabled people seeking asylum in Europe as a consequence of war, persecution, poverty and conflict.

The situation for people living other kinds of shifting and irregular lives, steeped in the context of hardship and monetary crises, are tackled by Kyung Mee Kim through stories of migrant workers who acquire impairments as a result of industrial accidents in Korea. In the context of increasing transnational movements of people in search of better lives questions which emerge here include: How can governments develop practices which will protect communities they serve from disabling conditions? What humanitarian responses to disabled migrant workers should be pursued? The focal research affords a rare opportunity for injured migrant workers to voice their own experiences, a theme which is taken up by Ema Loja, Emília Costa & Isabel Menezes as they examine an absence of thinking around participatory democratic cultures and practices which reflect the voices of disabled people in their chapter on views of disability in Portugal. The transnational power of the voices of disabled women for forming new global activism and alliances is discussed by Míriam Arenas Conejo.

Steven K. Kapp offers insider analysis of disabled people rights, entitlements and aspirations drawing upon constructs of harmony and beauty as encompassed by a wellness philosophy called Hozo to offer a conceptual tool for greater acceptance, inclusion and support of disabled people. Kapp makes the case for case for engaging with wellness philosophy as a strategy for engaging with disabled people on their own terms promoting the potentially transformative role of non-Western perspectives for enabling disabled people's own choices.

Wendy Bryant, Adrian Tibbs & John Clark focus in detail on the actuality of rights, spaces and innovations through the experience of people using mental health day services. The construction of safe inclusive spaces, identified as centrally important to people using mental health day services in middle England, echoes aspirations for refuge articulated by those threatened with expulsion from homes and communities in earlier chapters providing a circulatory resonance. Similarly, seeking to advance innovative new thinking and practice to support young disabled people and their families, leads Kristy Muir & Beth Goldblatt to place fresh emphasis on the importance of voice in the struggle to move beyond contemporary tensions which limit the right to self-determination. Under-examined and little understood connections and differences between disabled people's lives are evident within this paper and, also across the papers, that constitute the volume.

The final paper to be reproduced ‘Shifting boundaries in sports technology and disability: equal rights or unfair advantage in the case of Oscar Pistorius?’ written by Brendan Burkett, Mike McNamee & Wolfgang Potthast became one of the most down loaded articles of 2011 as the named athlete became the subject of huge press attention in the lead-in to the 2012 Olympics. Whatever the drivers for interest in this paper, it undoubtedly affirms widening public engagement with movements of borders and boundaries which are rapidly reshaping disabled people's lives, identities and futures and are the focus of this potent collection of writings in Disability Studies.

Such contributions as are found in this book take the journal's impact from strength to strength and we hope will introduce new readers to it. Collectively the papers reflect the journal's commitment to publish work that bridges the gap between the academy, the rhetoric of policy and the actuality of disabled people's lives and it is hoped this book will broaden access to thought-provoking debates for a new audience. To uphold the critical importance of placing disabled people's voices at the heart of the Disability Studies, and to build new communities of knowledge, policy and practice requires constant reimagining of the boundaries of our thinking. The papers in this book begin to exemplify some of the challenges and opportunities involved here.

Professor Michele Moore

Editor, Disability & Society

http://www.tandf.co.uk/journals/titles/09687599.asp

Crossing boundaries: foreign funding and disability rights activism in a context of war

Samantha Wehbi

School of Social Work, Ryerson University, Toronto, Canada

Focusing on a case example of disability rights activism in the context of war, I discuss the impact of foreign funding crossing boundaries. Specifically, I report on the findings of a study conducted with 28 activists who are part of a grassroots organization in Lebanon. I will suggest that while foreign funding brings necessary supports, it can hold negative impacts for the work of disability rights activism; specifically, I will argue that the strategies, approaches and conditions imposed through foreign funding are often problematic because they reinforce neocolonial discourses that lead to the exclusion and marginalization of disabled people.

Points of interest

• While most research has tended to focus on disabled people as recipients of services or care during times of war, this paper reports on a study that focused on disabled people as activists.

• Based on a case example of activists in Lebanon, the study's significance is in concretely demonstrating how disability rights activism during war can be impacted by foreign funding.

• Findings indicate that foreign funders' approaches and conditions can hinder disability rights activism and contribute to the marginalization and exclusion of disabled people.

Introduction

This article recounts the story of what happens when foreign funding crosses national boundaries. Focusing on a case example of disability rights activism in the context of war, I report on the findings of a study conducted with activists who are part of a grassroots organization in Lebanon. I will suggest that while foreign funding brings necessary supports, it can hold negative impacts for disability rights activism; I will argue that the strategies, approaches and conditions imposed through foreign funding are often problematic because they reinforce neocolonial discourses leading to the exclusion and marginalization of disabled people.

Each time a boundary is crossed to help ‘those less fortunate’ in the South, we have the potential to reproduce and perpetuate injustice. When disaster struck in Haiti in 2010, international aid organizations clamoured to assist in relief efforts. In the midst of the crisis, our thoughts turn to the people and communities impacted by the devastation, while we tend to focus less on those providing assistance, except to glamorize them. Yet, the legacy of colonialism and neocolonialism that contribute to the devastation and exacerbate its impacts need to be present in the forefront of our minds as an antidote to charity discourses expounded by northern states and international financial institutions rushing to the rescue. Taking into account neocolonial discourses and practices surrounding foreign funding, Ferguson (1996) cautions against the reproduction of paternalism in North/South relationships and Kapoor (2008, 94) suggests that ‘giving needs first to give pause’.

Discussions of the North's implication in environmental degradation and climate change, the history of colonialism and debt, as well as the daily ravaging of societies by economic structural adjustment programmes need to circumvent discourses about tragedy, inefficient southern governments and northern generosity. In the process of shifting discourses, we can become more critical and mindful of funding strategies and their impacts. Doing so is important as a way of reinforcing an awareness of global interdependence (Healey 2001). Len Barton (2009), the founder of this journal, highlights issues of disability emanating from the South as important questions that this journal focuses upon; he specifically notes the importance of critically examining the relationship of dominance between North and South.

Situating the study within the scholarship

Considering the transnational context of North/South interdependence and potential issues of dominance, it is important to situate the study within the postcolonial scholarship. Critiques of postcolonialism have pointed out that we are not in an era where colonialism has ended or that the end of colonialism can be discretely identified (Loomba 2005). In responding to the critiques, Sherry (2007, 11) maintains that the term ‘post’ within ‘postcolonialism’ seeks to ‘acknowledge the ongoing effects of such practices, as well as the changing forms of oppression embedded in contemporary international relations’. Sherry proposes using the term postcolonialism without a hyphen between ‘post’ and ‘colonialism’ as an acknowledgement of the history of colonialism and its continued manifestation in neocolonial practices. Sherry contends that a postcolonial analysis is necessary to more fully explore the interconnectedness between imperialism and colonialism on the one hand, and the historical and contemporary constructions of disability.

One of the avenues through which neocolonial practices manifest is through foreign funding of non-governmental organizations (NGOs) in the South. Ghai (2001) notes in her discussion of the disability rights movement in India that activism needs to be understood within the context of North/South power relations including contemporary neocolonial practices. This can be seen in the impact of western agendas on funding and political discourse relied upon by the activists themselves. Similarly, in the context of Zimbabwe, Chimedza and Peters (1999) as well as Devlieger (1998) argue that the situations of disabled people need to be understood by taking colonialism into account. Not only were disabled people's movements involved in anti-colonial struggles, they also played an important role in resisting foreign funding agendas that segregated services based on race.

Armstrong (2004) discusses the impacts of North/South power relations on funding for the women's movement in India. The author provides a case study of a grassroots women's organization that makes direct links between the nefarious impacts of corporate globalization on women and the organization's refusal to accept foreign funding. While this creates difficulties such as retaining community organizers who may be attracted to higher salaries in other organizations, the organization's refusal to accept foreign funding, defined as any funds from outside the membership base, has allowed it to retain control over its own social change agenda.

Marquez (2003) provides an example of the problematic impact of funding from outside the organization's membership base. One of the impacts for Mexican-American grassroots organizations is the distancing of activists from their membership as they adopt interventions tied to funder agendas. Another impact has been the professionalization of these organizations as specific sets of skills such as writing funding proposals become more highly valued than other skills such as community engagement. Furthermore, these organizations became less controversial in their organizing tactics in order to satisfy funder conditions. Marquez argues that outside funding could be seen as a deliberate effort to change the focus of these organizations from a social change mandate to a less controversial one.

In an aptly named book The Revolution Will Not be Funded (INCITE! Women of Color Against Violence 2007), ...

Table of contents

• Cover
• Half Title
• Title Page
• Copyright Page
• Table of Contents
• Citation Information
• 1. Foreword
• 2. Crossing boundaries: foreign funding and disability rights activism in a context of war
• 3. Disability and cross-border mobility: comparing resettlement experiences of Cambodian and Somali refugees with disabilities
• 4. Between protection and assistance: is there refuge for asylum seekers with disabilities in Europe?
• 5. I never expected to be a disabled person in another country: the stories of migrant workers with acquired disabilities in Korea
• 6. Views of disability in Portugal: “fado” or citizenship?
• 7. Navajo and autism: the beauty of harmony
• 8. Disabled women and transnational feminisms: shifting boundaries and frontiers
• 9. Visualising a safe space: the perspective of people using mental health day services
• 10. Complementing or conflicting human rights conventions? Realising an inclusive approach to families with a young person with a disability and challenging behaviour
• 11. Shifting boundaries in sports technology and disability: equal rights or unfair advantage in the case of Oscar Pistorius?
• 12. Current Issues: The World Report on Disability
• Index