The Routledge Handbook of Disability Activism

Maria Berghs, Tsitsi Chataika, Yahya El-Lahib, Kudakwashe Dube, Maria Berghs, Tsitsi Chataika, Yahya El-Lahib, Kudakwashe Dube, Maria Berghs, Tsitsi Chataika, Yahya El-Lahib, Kudakwashe Dube

• Publisher: Routledge
• Year: 2019
• ISBN:
  9781351165068
• Edition: 1
• Topic: Politics & International Relations
• Subtopic: Politics
• Index: Politics & International Relations

The onslaught of neoliberalism, austerity measures and cuts, impact of climate change, protracted conflicts and ongoing refugee crisis, rise of far right and populist movements have all negatively impacted on disability. Yet, disabled people and their allies are fighting back and we urgently need to understand how, where and what they are doing, what they feel their challenges are and what their future needs will be.

This comprehensive handbook emphasizes the importance of everyday disability activism and how activists across the world bring together a wide range of activism tactics and strategies. It also challenges the activist movements, transnational and emancipatory politics, as well as providing future directions for disability activism.

With contributions from senior and emerging disability activists, academics, students and practitioners from around the globe, this handbook covers the following broad themes:

• Contextualising disability activism in global activism

• Neoliberalism and austerity in the global North

• Rights, embodied resistance and disability activism

• Belonging, identity and values: how to create diverse coalitions for rights

• Reclaiming social positions, places and spaces

• Social media, support and activism

• Campus activism in higher education

• Inclusive pedagogies, evidence and activist practices

• Enabling human rights and policy

• Challenges facing disability activism

The Routledge Handbook of Disability Activism provides disability activists, students, academics, practitioners, development partners and policy makers with an authoritative framework for disability activism.

PART I

Introduction – contextualising disability activism

INTRODUCING DISABILITY ACTIVISM

Maria Berghs, Tsitsi Chataika, Kudakwashe Dube and Yahya El-Lahib

Introduction

The onslaught of neoliberalism, austerity measures and cuts, impact of climate change, protracted conflicts and ongoing refugee crisis, rise of far right and populist movements have all negatively impacted on disability. These circumstances have created more impairment and deaths in the global South and North. At the same time, we are witnessing the watering down of many rights, legal entitlements and policies that sustained disability lives. This includes the ability and willingness of academia, non-governmental organisations, multinationals and institutions to get involved in fighting back politically, economically, culturally and socially to ensure change. Yet, disabled people and their allies are fighting back and we urgently need to understand how, where and what they are doing, what they feel are their challenges and their future needs.

We are living through ‘activist’ times with differing formal and informal expressions of what activism looks like from individual actions, artistic movements, mass protest marches, hashtag activism (e.g. #ArabSpring, #BlackLivesMatter, #JeSuisCharlie, #MeToo movement, #ThisFlag), consumer activism, climate activism, peace activism; to ensure collective institutional, legislative or political change (Shirky, 2008). These campaigns are viewed as more inclusive, democratic, ‘liquid’ and horizontal in nature, in that anyone can join (Tufecki, 2017; Gerbuado, 2018). With the impact of social media, boundaries between public and private life collapse. The personal now can become political and part of public discourses, as well as imagery, and experienced as individually empowering. Public spaces become ‘occupied’ and appropriated for direct action, political slogans of resistance and mass protests (Gerbuado, 2018). Most activists now use technology, such as mobile phones and the Internet, as well as email, photographs, videos, podcasts, crowdfunding and blogs, making it accessible to a wider global audience.

Much of the physical and emotional labour of activism and advocacy, in terms of writing letters or calling, recruiting new members, ensuring funding, thinking of campaign slogans and planning innovative actions and tactics for attention, has thus profoundly altered with this new media landscape (Shirky, 2008; Tufecki, 2017). At the same time, there have been criticisms of this ‘new activism’, with some despairingly calling it mainly ‘online’, ‘cyber’ or ‘digital’ activism, ‘clicktivism’, or ‘slacktivism’ (Karpf, 2010; McCaughey & Ayers, 2013). While the new activism seems to fit ideas of social movements in terms of collective message, vision and shared ideas for change, often popular appeal, quantitative impact or even online vitality of a campaign, has not always translated to effecting real change, especially in neoliberal times (Tufecki, 2017).

Despite mass appeals of transnational movements, software platforms (i.e. Facebook, Twitter, WhatsApp, Telegram, Instagram) and international non-profit organisations focusing on whistling blowing (i.e. WikiLeaks), this has led to very little structural political change, particularly in dictatorial countries (Tarrrow, 2005; Gerbuado, 2018). Moreover, overt individual direct political dissent in undemocratic countries, activism that threatens international economic powers or whistle-blowing globally, is fraught with dangers and often ensures that certain types of (hack)activism have to go underground (Lindgren & Lundström, 2011). A kind of hierarchy emerges in how the risks and rewards of legal and illegal, as well as overt and covert activism are understood. Increasingly, we are also seeing the rise of not only more politically conservative types of activism; but also openly violent, fascist, racist, homophobic and populist activism alongside neoliberal ‘extractivist’ activism for private economic gain or terror and conflict, which goes unregulated and unpunished. Much of the new activism, especially online, seems to be done from positions of technological comfort, digital, political and economic algorithmic power as well as language privilege, which is rarely acknowledged. Tufecki (2017, p. xi) argues that we are witnessing a shift in how social movements ‘operate’ and how they are opposed due to ‘technological affordances’. These ‘technological affordances’ also come with real technological, physical and emotive risks, in terms of loss of privacy and need of new technological skillsets to protect oneself in the real and virtual world.

Criticisms have also been directed at much of the online policing in terms of language and terminology that is being used, noting that this is undemocratic, encourages censure and is counter to freedom of expression. It also entails that activism is not setting agendas; but one of disagreement, dissent and resistance as well as encouraging ‘self-censure’ for personal preservation in public spaces and the creation of ‘echo-chambers’. In the United States of America (USA), critics argue that cyber activism through the use of online marketing and algorithms for the political right, has contributed to division, ‘shock-politics’ and ‘post-truth’ acceptance (see Klein, 2017). Concerns have been raised about the proliferation of ‘big data’ and how inequalities have gradually become automated in institutions. Conversely, they have real consequences for poor people in terms of employment, insurance, mortgages, justice and healthcare (O’Neil, 2017; Eubanks, 2018).

The trajectories of new activism have also been criticised as being neo-colonial, racist and mostly from North to South with very little cultural sensitivity and local expertise, as exemplified by the Kony 2012 video campaign cited in Cole (2012). Furthermore, questions have been raised about links to consumerism, identity politics and lack of transparency about who really benefits from the work of activism and branding of oneself as a particular type of ‘activist’ (Chataika et al., 2015). It almost seems as if it has become ‘trendy’ to proclaim oneself as an ‘activist’ in terms of neoliberal identity management, possible access to resources and moral branding or virtue signalling. Activism has become another commodity to buy into, in terms of neoliberalism, thus blurring the boundaries between consumerism, humanitarianism and resistance (Mukherjee & Banet-Weiser, 2012; De Waal, 2015).

What is missing from many of the above criticisms and analysis of new forms and impetus of activism is ‘disability’ (Soldatic & Johnson, 2019). This is a grave concern, particularly when we are living in what some have defined as ‘Crip Times’ or neoliberal austerity that particularly affects and creates disability (McRuer, 2018). Accordingly, this makes manifestos for disability justice and activism urgent (Ellis et al., 2018). In the newer forms of disability activism, the focus on the everyday and people behind the hashtags or understanding the individual and collective motivations for participating in particular protests has been missing. While everyone is involved in new forms of activism – from local to global (this is inclusive of age, ethnicity, gender, socio-economic class and so on), disability theory, people with impairments, illness and chronic conditions, as well as different forms of new activisms, have been neglected. This could be because disability activism is often misunderstood or relegated to those disability rights activists with active social media profiles, academic careers, international contacts or involvement in Non-Governmental Organisations (NGOs) (Soldatic & Johnson, 2019). More so, the work of those who write profusely in the English language is easily accessed by large human rights organisations in the global North and South (Chataika et al., 2015).

Disability activism is also incorrectly viewed as only about disability ‘rights’ or with inadequate cross-cultural or interdisciplinary reach. It is often erroneously seen as something ‘special’ or ‘different’, with limited political or human rights impact that only those with a ‘disability’ identity can do. However, there is often no nuanced understanding of what ‘disability issues’ involve. We have nonetheless seen a surge of disability advocacy, activism, campaigning and research on activism, from confrontational protests and symbolic direct action in Bolivia for pensions (Brégain, 2016; Vásquez Encalada, 2019), a mother advocating for justice for her disabled child in the United Kingdom (UK) (Ryan, 2017), the Sins Invalid¹ performance project on disability and sexuality, the African Network on Evidence to Action on Disability (AfriNEAD) (Mji et al., 2011), to the start of a disability movement and advocacy on disability issues in China (Zhang, 2017) and its intersectionality to other movements like #MeToo (Lin & Yang, 2019). All these different forms of activism have been infused with a renewed sense of global urgency due to the political, social, cultural and economic times in which we live. They were also influenced by a shared history, theories and collective social movement, which is important to understand. We do not set any boundaries around the language and theories being used in this book, but we rather give a brief introductory overview.

Understanding models, language and movements

Over 15% of the world’s population has a form of impairment, and this has come to the world’s attention due to the disability movement (WHO & World Bank, 2011). In order to understand how the disability movement became a collective global movement, there is a need to comprehend the importance of models and theories of disability to ensure a collective consciousness. It may seem as if the disability rights movement began in the 1960s with the start of the civil rights, women’s rights and other differing social movements in the UK and USA, but its origins lie earlier (Sabatello & Schulze, 2013). If we think models or theories influence language and effect social change, we note that the earliest models of disability were charity models, which is reflected in policy and legislation and early formation of organisations and institutions around specific forms of impairments.

A charity model of disability views disability as something to be ‘pitied’ and a disabled person as in need of charitable aid. Thus, it looks at disabled people as individuals who are unable to do things for themselves, who need to be protected and decisions made on their behalf (Chataika, 2019). Hence, we can locate this in advocacy, for example, in the 1600s, in the early laws for the poor, infirm, aging or even aid for soldiers who gain physical and mental injuries through battle, as well as creation of the first ‘mad’ houses and charities in the 1800s. The charity model of disability is closely tied to a medical model understanding of disability, which views disability as a problem or biological pathology that can be medically cured, fixed by medical technology or rehabilitated. Thus, the medical model focuses on the impairment – on what is ‘wrong’ with the person (Oliver & Barnes, 2012). It looks at the ways in which the person deviates from the norm, and tries to narrow that gap. The assumption here is that ‘normal’ is automatically desirable and to be aspired to. The ‘problem’ lies with the individual, depending on what they can or cannot do (WHO & World Bank, 2011).

Early global disability advocacy and movements were linked to colonialism and imperialism; for example, the creation of impairment-specific organisations and institutions, such as for ‘blind’ people (Phillips, 2009; Rembis et al., 2018). Yet, these organisations were mainly run by and controlled by non-disabled people in the global North, which were closely linked to Judeo-Christian understandings of disability. The British and Foreign Society for Improving Embossed Literature for the Blind, a forerunner of the UK’s Royal National Institute for Blind People, was founded by a doctor who had issues with his eyesight; but this remained exceptional. The great depression after the First World War meant the formation of The League of the Physically Handicapped in the USA, which advocated for welfare issues (Longmore & Goldberger, 2000). The two world wars also entailed the start of specialised rehabilitative services, inclusive of sport for service men and women who became disabled during conflict (Albrecht, 1992; Brittain & Beacom, 2018).

In contrast, the social model of disability developed from the experiences of disabled people and their activism against the charity and medical models of disability, as well as the control that these professionals exerted over their lives. Thus, in the 1970s, a group called the Union of Physically Impaired Against Segregation (UPIAS) campaigned for the rights of people with impairments to participate fully in society, to live independently, to undertake productive work and to have full control over their lives. The social model of disability suggests that a person is disabled by society’s inabilities to adapt to disabled people’s needs. For example, the wheelchair is not the problem, the stairs are. UPIAS made a difference between physical, sensory or cognitive impairment and the experience of oppression created by barriers, discriminatory attitudes and exclusion, which they called disablement. According to UPIAS (1976, p. 14):

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.

The social model removes the focus and ‘blame’ from the disabled person to society in general. Since then, the social model has encompassed not just people with physical impairments, but also people with sensory impairments, intellectual and mental health conditions. This idea was foundational to understanding disablement and disability identity as imposed on top of impairment, meaning that there was nothing ‘wrong’ with a person who had imp...

Table of contents

• Cover
• Half Title
• Series Page
• Title Page
• Copyright Page
• Dedication Page
• Table of Contents
• List of contributors
• Acknowledgements
• PART I Introduction – contextualising disability activism
• PART II Neoliberalism and austerity in the global North
• PART III Rights, embodied resistance and disability activism
• PART IV Belonging, identity and values: diverse coalitions for rights
• PART V Reclaiming social positions, places and spaces
• PART VI Social media, support and activism
• PART VII Campus activism in higher education
• PART VIII Inclusive pedagogies, evidence and activist practices
• PART IX Enabling human rights and policy: Transition: international politics
• PART X Conclusion – the coming challenges and future directions
• Index