Global Perspectives on Disability Activism and Advocacy

Our Way

Karen Soldatic, Kelley Johnson, Karen Soldatic, Kelley Johnson

• Publisher: Routledge
• Year: 2019
• ISBN:
  9781351237475
• Edition: 1
• Topic: Ciencias sociales
• Subtopic: Discapacidades en sociología

This book explores the diverse ways in which disability activism and advocacy are experienced and practised by people with disabilities and their allies.

Contributors to the book explore the very different strategies and campaigns they have used to have their demands for respect, dignity and rights heard and acted upon by their communities, by national governments and the international community. The book, with its contemporary global focus, makes a significant contribution to the field of disability and social justice studies, particularly at a time of major social, political and cultural upheaval.

Global Perspectives on Disability Activism and Advocacy offers a significant intervention within the field of disability at a time of major social upheaval where actors, advocates and activists are seeking to hold onto existing claims for rights, equality and disability justice.

1 Introduction

Doing it our way: disability, activism and advocacy

Karen Soldatic and Kelley Johnson

Life always seems to be about fights, settle fights, settle fights and on and on and on and on. It hasn’t stopped since the day I was born, I don’t think. It’s just being aware of what rights you have and what you haven’t. It’s a matter of just standing up and just leaping for it I guess and not being scared to take a stand. I’ve been fighting ever since the day I was born and I’m still doing it.

(Amanda Millear with Kelley Johnson 2000, p. 241)

We chose this statement by Amanda Millear, who sees herself as having struggled all her life for her rights as a disabled woman, because it encapsulates many of the issues which have led to this book. Amanda’s work as an activist has been a force in her life for many years, during which time the way people with disabilities have been seen has shifted, from people needing medical intervention and care to people with rights who are worthy of dignity and respect in all their humanity. The most notable changes within this shift have been the introduction of anti-discrimination laws in some countries (e.g. the Australian Disability Discrimination Act 1992 and the Americans with Disabilities Act 1990), the movement to deinstitutionalization and the establishment of disability rights in international law via the United Nations Convention on the Rights of Persons with Disabilities (2006). Yet, as Amanda says, and as the contributors to this book illustrate, the fight goes on.

The flourishing international research in this area is testament to the continued importance of disability activism and advocacy (Charlton 2000, Zames and Zames Fleischer 2001, Pelka 2012, Block et al. 2016, Kelly and Orsini 2017, Galer 2018). Each work has made a significant contribution to Disability Studies by illuminating the crucial work undertaken by disability activists and advocates. This book aims to build on the knowledge provided by this literature by focusing on the different ways people with disabilities in different cultural contexts have practised activism and advocacy, and mobilized their activist and advocacy tendencies at the international and national level. It also aims to make explicit the different paths taken by people with disabilities on their journeys to becoming advocates and activists. The book, therefore, aims to document the impact of the current wave of mobilizations by disabled people across different nations and internationally, and to demonstrate the importance of remembering the collective struggles of disabled people.

This book is shaped by a range of questions. These questions emerged from our own engagement in the space of ‘disability’ and our ongoing contact with disabled activists and advocates in our work. How do disabled people see, understand and participate in activism and advocacy? What practices do disabled people use to mobilize for social change? How do disabled people understand the different practices pursued to effect social change and how do they choose the most appropriate path for them? At what moment do they decide the need to move from street-based protest to more formalized activities, and vice versa, including developing disabled people’s representative organizations? What is the role of international organizations and networks in advancing disability activism and advocacy? What are the challenges to achieving and sustaining rights for people with disabilities? What roles do allies of disabled people play in the development of their advocacy and activism? How is the struggle for rights by people with disabilities challenged or supported by different social movements? What considerations come into play when working across differing identity groups? What contribution do disabled people make to these other struggles? What has been the impact of disabled people’s advocacy and activism in achieving positive social change?

The book has sought to deepen our understanding of these questions and hopefully to facilitate an ongoing reflexive dialogue between those involved with processes, practices and strategies of disability advocacy and activism.

A personal reflection as editors

One of the issues that was at the forefront of our minds as we began thinking through the possibilities of this book was that neither of us identify as someone living with an impairment or as having a disabled subjectivity. Commonly, within the disability movement, we are often referred to as disability allies, that is, people who work ‘alongside’ disabled people with the aim of supporting their individual and collective struggles for respect, dignity and the realization of rights. In acknowledging this role, we are, however, conscious that it is an ambivalent position from the perspective of people with disabilities. While allies are essential to any action that seeks social change, they can also undermine claims for respect, rights and redistribution. The history of people with disabilities is littered with people who saw themselves as benevolent and supportive but who contributed to the oppression and segregation of disabled people. In editing this book, we have hoped to take a self-critical and reflexive position in relation to ourselves and have sought to ensure that our contributors are free to openly advance their positions in relation to their work.

It also needs to be stated that, while we do not identify (yet) as having disabilities, we have not been immune from the need to be self-advocates and activists although we are very aware of our relatively privileged positions. In our journeys as women, Karen as the child of migrants growing up in the working-class suburbs of Greater Western Sydney, and Kelley as the child of a rural, working-class, white Australian family, we have inevitably become involved in our own personal and collectivist struggles for recognition, respect and dignity. Both of us have been active in seeking to advance our own and others’ rights in a society which remains patriarchal, hetero-normative, racist, ableist and elitist. We concur with Amanda that the struggle for rights, justice and social solidarity goes on.

Activist wisdom and the possibility of social change

In 2006, Sarah Maddison and Sean Scalmer, in partnership with those working for socially just change, explored the practical knowledge drawn upon in decision-making, tactics and strategies, and orientations of those commonly defined as advocates and activists. As part of the narrative journey, a range of critical insights emerged that largely appeared to be shared across the life histories of those involved. The aim of Activist Wisdom was to move beyond a focus on a particular social movement, organization, group or person, and to distil the possibility of shared tenets across disparate fields of social movement organizing, to understand how those involved gave meaning to their actions, practices and orientations. Through this process, Maddison and Scalmer illuminated the actual work of socially just transformation and how it is organized and coordinated across individuals, coalitions and movements.

Reading this work in the early stages of the formulation of this book played a critical role in how we wanted to frame our invitations to contributors. What we found most curious, and outside dominant social movement literature such as that of Tilly and Tarrow (2015), was that most of the participants involved in the Maddison and Scalmer project overwhelmingly refrained from adopting terms such as ‘activist’, ‘advocate’ or ‘ally’. In a second reading of the work, we would even suggest that many of the participants of the Maddison and Scalmer project actively recoiled from any intentional acts of self-definition along these normative lines. The ‘who they are’, ‘what they do’, ‘why they do it’ and ‘how they do it’ appeared embedded in their political commitments, personal tenacity and strategic practice. Transforming social, cultural, political and institutional spheres, we learn, should not be hampered by prior perceptions of what one is, was or could be but, more importantly, by what one has the power to do (Maddison and Scalmer 2006).

Since the release of Activist Wisdom in 2006, there is no doubt that the world has pulled, shifted and rattled, significantly altering the landscape of activism. The global financial crisis and its counterpoint, the 99% Movement (2008), alongside the rise of popular nationalism (Hindu nationalism in India, Trump in the USA and Brexit in the UK, as examples) clearly indicate that progressive activism and advocacy for socially just change has come to a point of crisis. This is particularly the case as traditional strategies of progressive social movements seem to have been actively harnessed to renew and advance highly regressive and conservative political agendas (Gusterson 2017).

Global inequality is proliferating and household access to personal resources, supports and services has undergone radical diminution across all regions of the world (Alvaredo et al. 2018). Abject poverty, precarity and dispossession have almost become mundane within many parliamentary democracies, alongside the withdrawal of rights, entitlements and redistributive social provisioning with the latest rendition of neoliberal political economic governing – global austerity. The success of politically conservative campaigns illustrates the urgent need to hear and better understand the priorities, tactics, strategies and framing of disability advocacy and activism. We have learned from history how quickly transformative reforms and tactics can be undermined or undone. It is now necessary to ensure that the struggle for disability justice, rights and participatory parity are progressed, despite the significant hurdles that are emerging across the broader political landscape. As editors, we hope this book contributes to this progress.

The contributors to this book explore the variegated forms of activist and advocate wisdom that disabled people utilize in their work for systemic change. As the chapters illustrate, disability activists, advocates and their allies engage with a composite set of practices, knowledge of the landscape and rich skill sets. Some of these attributes and skills are gained from experience or from learning about past campaigns, protests and struggles for social change. Some have been learned through experiential processes – getting out on the street, working across and within social movements, identifying opportunities for social change within institutions, and drawing on resources that are readily available and accessible, such as social media platforms. As the contributors to this book demonstrate, being an activist, advocate and/or ally brings together personal tenacity, commitment and a ‘hunch’ of what ‘should be’, coupled with tactical actions that are both learned and experimental in their orientations (Maddison and Scalmer 2006).

Concurring with the participants in Maddison and Scalmer’s project, the contributors to this volume write about how they often find themselves in a position where they feel that they must ‘do’ something, contribute ‘somehow’ and ‘become’ involved. The focus is thus a practical orientation to the work that they do to drive social transformation on issues of importance for the struggle for disability justice. Actions, campaigns and tactics can be both expressive and instrumental, depending on the target of their actions and the necessity of the ‘what should be done’ (Maddison and Scalmer 2006, p. 67). While at times this may mean building broadscale alliances within the disability movement, at other times it will mean identifying opportunities to intervene in the campaigns of other social movements to insert disability into their agendas. It often means that in their work they will adopt person-first language – ‘persons/people with disabilities’ – or, at other times, use the term most commonly associated with western disability movements – ‘disabled people’. This orientation towards how to define disability is driven by the context in which activists undertake their activism and advocacy, what they see as the most politically salient for the campaign in which they are involved, or as a personal preference. Given this, our approach as editors is to work in concert with the contributors’ own processes in defining ‘disability’. Therefore, throughout the book, writers often use the terms ‘disabled people’ and ‘people with disabilities’ interchangeably, and do not necessarily understand this as being politically inconsistent in their orientation, but rather as an acceptance of political positions that emerge in their collective work.

Disability activists and advocates in their strategies and campaigns share a wisdom with other activists, advocates and allies within other social movements (Maddison and Scalmer 2006). Whether it is the moment for reform or for revolution is a question that is answered within the moment. Activists, advocates and allies evaluate not only the potential for redress or change, but to what degree such change can be realized. Is it a step-by-step process of institutional reform with targeted actions, or does there need to be a broadscale public campaign that builds significant public interest in the issue? In navigating the issues as they emerge on the ground, advocates, activists and allies work with a list of questions such as ‘who needs to be influenced?’, ‘how should we frame this issue?’ and ‘how can we give the issue traction?’

As the contributors to this international anthology illustrate, disability advocates, activists and allies often have to make choices within the moment of their organizing. The level of public expression or closed-door negotiations is framed by the issue at hand and the surrounding politics that gives it meaning. Most significantly, as the contributors suggest, disability activism and advocacy is a negotiated process – across disabled people, their allies and networks. Identifying opportunities for social change and the possibilities for intervention are ongoing issues that disability activists, advocates and allies navigate as part of their campaign work. Sharing knowledge, skills, tactics and information, as a form of collective reflexive learning, generates a strategic wisdom to inform future success and socially just transformation (Maddison and Scalmer 2006).

Book themes and structure

This book is broken into five parts: remembering and remembrance; movement organizations and leadership; activism across multiple identities; a...