Disability and Citizenship Studies

Marie Sépulchre

• Publisher: Routledge
• Year: 2020
• Print ISBN:
  9780367542283
• eBook ISBN:
  9781000175905
• Topic: Social Sciences
• Subtopic: Civics & Citizenship
• Index: Social Sciences

Focusing on the case of disability, this book examines what happens when previously marginalised individuals obtain the legal recognition of their equal citizenship rights but cannot fully enjoy these rights because of structural inequality.

Bringing together disability and citizenship studies, it explores an original conceptualisation of disability as a distinct social division and approaches citizenship as a developing institution. In addition to providing innovative theoretical perspectives on citizenship and disability, this book is grounded in the empirical analysis of the claims of disability activists in Sweden. Drawing on a wide range of blog posts and debate articles, it sheds light upon the inequality and domination faced by disabled people in Sweden and underlines the disability activists' proactive ideas and solutions for constructing a more equal citizenship.

This book will be of interest to scholars, activists and policymakers in the fields of disability, citizenship, social inequality, human rights, politics, activism, social welfare and sociology.

1 ‘This is not citizenship’

In 1929, the Belgian painter René Magritte famously painted a pipe under which he wrote ‘This is not a pipe’. By this puzzling painting, Magritte invited the audience to reflect on the link between reality and representation and realise that, indeed, this painting is not a pipe but a representation of a pipe.

The famous pipe. How people reproached me for it! And yet, could you stuff my pipe? No, it’s just a representation, is it not? So if I had written on my picture ‘This is a pipe’, I’d have been lying!

(Magritte, quoted in Beebe 1981)

In analogy to Magritte’s painting, Figure 1.1, which represents a passport under which is written ‘This is not citizenship’, invites the reader to contemplate the issue of citizenship in light of the complexity of the construction of formal membership in a state.

Figure 1.1 ‘This is not citizenship’, painted by Caitlin Moens.

This book follows in the footsteps of T. H. Marshall,¹ who proposed a sociological approach to citizenship, and connects it to the situation of disabled people. In his seminal essay on citizenship and social class, first published in 1950, Marshall argued that citizenship is a ‘developing institution’, which is based on the principle of equality but evolves in a context of socio-material inequality (Marshall 1992). Focusing on mid-20th-century England, Marshall (1992) considered the situation of the working-class men who had newly been granted equal citizenship rights. He called attention to the fact that formal equal citizenship rights do not necessarily mean equal possibilities to enjoy rights in reality because people have unequal access to socio-material resources.

To examine this issue further, Marshall (1992) traced the historical development of citizenship in England. He stated that civil, political and social citizenship rights had been legislated from the 18th century onwards and that citizenship rights changed from being restricted to wealthy property owning (male) adults, to being granted to all (male) adults except for welfare claimants, and then to all (male) adults. Thus, he argued that citizenship developed according to two parameters: more citizenship rights were established, and these rights were granted to an increasing part of the population. Contemplating the structure of the English society, Marshall (1992) examined the impact that this development towards formal equality between citizens would have on a society stratified according to social class. Further, Marshall (1992) connected the various citizenship rights to different institutions: civil rights to the courts of justice; political rights to the parliament and councils of local government; and social rights to social services and the educational system. As such, Marshall’s (1992) description suggests an understanding of citizenship rights in relation to their implementation by various state authorities. Furthermore, he stated that ‘[c]itizenship is a status bestowed on those who are full members of a community’ (Marshall 1992:18). This suggests then that citizenship implies recognition and a social identity for those who are granted citizenship rights. Despite its valuable insights, Marshall’s (1992) analysis comprises a series of limitations (see Chapter 2). Among others, it does not take into account other dimensions of structural inequality, such as gender and ethnicity/race, and it fails to examine the social mechanisms behind the development of citizenship. This book proposes that Marshall’s (1992) contribution offers nonetheless valuable insights to analyse the situation of disabled people in a given state, providing that the limitations of his work are taken into account.

Pointing to the role of social struggles, Turner (1986:92) claimed that ‘[t]he growth of citizenship in western industrial societies can be seen as the outcome, intended or unintended, of a diversity of social movements’. This is certainly true of recent history, which has witnessed the struggles of many marginalised groups of people claiming full and equal membership in society. Well-known examples are the struggle of black American citizens during the civil rights movement in the United States, as well as the women’s movements, the LGBTQ movements and the indigenous people’s movements around the world that mobilise around structural inequalities connected to ethnicity/race, gender and sexuality. I propose that social movements asking for changes in the institution of citizenship can be viewed as ‘citizenship struggles’. Here, it is important to remark that such struggles are not necessarily inclusionary. Activists engaging in citizenship struggles can demand the inclusion of more people as equal citizens in a given state or, on the contrary, ask for the restriction of citizenship. Well-known examples of the latter are the struggles of nationalist movements, eugenics movements and neo-Nazi movements, whose claims seek to modify the boundaries of citizenship so as to limit its territorial scope and/or restrict the citizenship rights of some parts of the population.

This book focuses on a citizenship struggle that has gone relatively unnoticed in sociology and in the social sciences in general: the citizenship struggle of disabled people. Now, the reader might wonder whether disability activism can actually be considered as a citizenship struggle. This is an empirical question and, based on the analysis of the claims of disability activists in Sweden, I will argue in this book that disability activism can be viewed as a citizenship struggle because the claims of the Swedish disability activists include many references to various components of citizenship, which I call ‘citizenship building bocks’ (see Chapter 2). Further, the reader might wonder why the citizenship of disabled people would be an interesting research topic. A first reason is quantitative: disabled people form a sizable portion of the population (estimated at 16–19% of the adult population in the world; WHO 2011) and the implementation of disability policies represents a sizable amount of state money (an average of 2% of the GDP in OECD countries is spent on disability and sickness benefits; WHO 2011). Already for this reason alone, the issue of citizenship for disabled people is a relevant topic.

A second reason is that disabled people have relatively recently been granted equal citizenship rights in many countries. If we take the example of citizenship in Sweden, which is the country in focus in this book, disabled people have increasingly been granted equal citizenship rights during the past decades. These include the right to education, the right to get married, the right to vote, the right to use sign language, the right to get personalised support measures, the right to non-discrimination and so forth (see Chapter 2). Of particular importance is the Act on Support and Service to Persons with Certain Functional Impairments of 1993 (the LSS Act), which includes the right to personal assistance and whose purpose is to provide people with severe impairments, as defined by the law, the possibility to ‘live like others’. Another example is the United States, which first granted equal and non-discrimination rights to disabled people with the passage of Section 504 of the Rehabilitation Act of 1973. By this landmark legislation, the American federal government decided that ‘people with physical and mental disabilities must have equal access to programs and activities supported with federal funds’ (Scotch 2001:3). This implied, among others, that federally funded systems of public transportation in the American cities had to be accessible to wheelchair users (Skrentny 2002). Like Sweden and the United States, many countries have formally agreed to ensure the rights of disabled people in recent years. This shows in the ratification process of the United Nations Convention on the Rights of Persons with Disabilities (CRPD), which has been ‘the most swiftly ratified international treaty’ in the history of the UN and was ratified by 87% of the UN Member States at its 10-year anniversary (United Nations 2018).² To date, the CRPD has been ratified by 181 states and signed by nine states, while only eight states have not taken action (OHCHR 2020).

As such, the current citizenship situation of disabled people presents similarities with Marshall’s (1992) analysis in that, like the British working-class men at the beginning of last century, disabled people in many countries have formally been granted equal citizenship. However, also like the working-class men in Marshall’s (1992) analysis, disabled people do not have equal access to their citizenship rights. The World Health Organization (WHO) World Report on Disability stated that ‘[m]any people with disabilities do not have equal access to health care, education, and employment opportunities, do not receive the disability-related services that they require, and experience exclusion from everyday life activities’ (WHO 2011:xxi). Next to enduring disabling barriers, research in disability studies has pointed out that recent welfare cuts have had serious consequences on the lives of disabled people (e.g. Brennan et al. 2016; Briant, Watson, and Philo 2013; Grover and Soldatic 2013; Hande and Kelly 2015; Harwood 2014; Malli et al. 2018; Norberg 2019; Saffer, Nolte, and Duffy 2018). The present situation appears therefore to be contradictory because, while many governments have formally extended the citizenship rights of disabled people and committed themselves to ensure these rights by ratifying the CRPD and adopting national strategies and action plans, the same governments have decided to cut their welfare budgets and limit disability expenditure, thereby jeopardising the realisation of these rights. This book aims to shed light upon this contradictory situation by taking a step back and considering the construction of disabled people’s citizenship in Sweden.

A third reason to study the construction of disabled people’s citizenship is that we know very little about ‘disability’, understood in terms of structural inequality. Drawing upon the analysis of meaning in policymaking in the United States, Skrentny (2002) argued that the civil rights movement had paved the way for a ‘minority rights revolution’ because, in the following decades, new laws and policies were adopted to strengthen the rights of other groups of marginalised citizens, including Latinos, women...

Table of contents

• Cover
• Title
• Copyright
• Contents
• Figures and tables
• Acknowledgements
• Abbreviations
• A note on terminology and translations
• 1 ‘This is not citizenship’
• 2 Exploring the construction of citizenship in Sweden
• 3 Understanding disability and disability activism
• 4 Analysing the claims of disability activists in Sweden
• 5 What problems do the disability activists highlight?
• 6 What solutions do the disability activists propose?
• 7 Understanding the disability activists’ claims through the lens of citizenship
• Index