Disability and Citizenship Studies

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Disability and Citizenship Studies
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DOI: 10.4324/9781003030676
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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.
Marie Sépulchre is a SYLFF (Sasakawa Young Leaders Fellowship Fund)

postdoctoral fellow at the Department of Sociology at Uppsala University,
Sweden, and a visiting fellow at the Strathclyde Centre for Disability
Research at the University of Glasgow, UK.
Interdisciplinary Disability Studies
Series editor: Mark Sherry
The University of Toledo, USA
Disability studies has made great strides in exploring power and the body.
This series extends the interdisciplinary dialogue between disability studies
and other fields by asking how disability studies can influence a particular
field. It will show how a deep engagement with disability studies changes our
understanding of the following fields: sociology, literary studies, gender
studies, bioethics, social work, law, education, or history. This ground-
breaking series identifies both the practical and theoretical implications of
such an interdisciplinary dialogue and challenges people in disability studies
as well as other disciplinary fields to critically reflect on their professional
praxis in terms of theory, practice, and methods.
Critical Disability Studies and the Disabled Child

Unsettling Distinctions
Harriet Cooper
Disability, Globalization and Human Rights

Edited by Hisayo Katsui and Shuaib Chalklen
Reimagining Disablist and Ableist Violence as Abjection

Ryan Thorneycroft
Identity Construction and Illness Narratives in Persons with Disabilities

Chalotte Glintborg and Manuel de la Mata

Marie Sépulchre
Women with Disabilities as Agents of Peace, Change and Rights

Experiences from Sri Lanka
Edited by Karen Soldatic and Dinesha Samararatne
For a full list of titles in this series, please visit: www.routledge.com/series/

ASHSER1401
Disability and Citizenship
Studies
Marie Sépulchre
First published 2021
by Routledge
2 Park Square, Milton Park, Abingdon, Oxon OX14 4RN
and by Routledge
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Routledge is an imprint of the Taylor & Francis Group, an informa
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© 2021 Marie Sépulchre
The right of Marie Sépulchre to be identified as author of this work
has been asserted by her in accordance with sections 77 and 78 of the
Copyright, Designs and Patents Act 1988.
All rights reserved. No part of this book may be reprinted or
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Trademark notice: Product or corporate names may be trademarks or
registered trademarks, and are used only for identification and
explanation without intent to infringe.
British Library Cataloguing-in-Publication Data
A catalogue record for this book is available from the British Library
Library of Congress Cataloging-in-Publication Data
Names: Sépulchre, Marie, author.
Title: Disability and citizenship studies / Marie Sépulchre.
Description: Abingdon, Oxon ; New York, NY : Routledge, 2021. |
Series: Interdisciplinary disability studies | Includes bibliographical
references and index.
Identifiers: LCCN 2020014322 (print) | LCCN 2020014323 (ebook) |
ISBN 9780367467265 (hardback) | ISBN 9781003030676 (ebook)
Subjects: LCSH: People with disabilities‐‐Civil rights‐‐Sweden‐‐Case
studies. | Citizenship‐‐Sweden‐‐Case studies. | Discrimination against
people with disabilities‐‐Sweden‐‐Case studies. | Social stratification‐‐
Sweden‐‐Case studies. | Sociology of disability‐‐Sweden‐‐Case studies.
Classification: LCC HV1559.S9 S47 2021 (print) | LCC HV1559.S9
(ebook) | DDC 323.3/709485‐‐dc23
LC record available at https://lccn.loc.gov/2020014322
LC ebook record available at https://lccn.loc.gov/2020014323
ISBN: 978-0-367-46726-5 (hbk)

ISBN: 978-1-003-03067-6 (ebk)
Typeset in Times New Roman

by MPS Limited, Dehradun
Contents
Figures and tables vi

Acknowledgements vii
Abbreviations x
A note on terminology and translations xi
1 ‘This is not citizenship’ 1
2 Exploring the construction of citizenship in Sweden 28
3 Understanding disability and disability activism 62
4 Analysing the claims of disability activists in Sweden 102
5 What problems do the disability activists highlight? 118
6 What solutions do the disability activists propose? 150
7 Understanding the disability activists’ claims through

the lens of citizenship 184
Index 212
Figures and tables
Figures
1.1 ‘This is not citizenship’ 2
4.1 Number of blog posts published, 2010–15 103
4.2 Number of debate articles published, 2008–17 106
Tables
2.1 Timeline of legal restrictions and legal rights 50
4.1 Scope of the main Swedish daily newspapers for an
average day of 2017 105
4.2 Characteristics of the activists who wrote the blog posts
and debate articles 109
4.3 Scope and types of societal areas covered in the disability
activists’ texts 110
4.4 References to ‘citizenship building blocks’ in the blog
posts and debate articles 112
4.5 References to laws and international treaties in the blog
posts and debate articles 113
4.6 References to types of impairments in blog posts and
debate articles 114
4.7 Ways in which the blog posts and debate articles refer to
disabled people 115
5.1 Various types of problems mentioned in the blog posts
and debate articles 119
5.2 Causes of the problems mentioned in the blog posts and
debate articles 128
6.1 Various demands mentioned in the blog posts and debate
articles 151
6.2 Ways forward mentioned in the blog posts and debate
articles 162
Acknowledgements
This book is based on my doctoral thesis and therefore owes a lot to many
people I met during my time as a PhD student. I thank Sandra Torres and
Rafael Lindqvist who were my supervisors at the Department of Sociology
of Uppsala University (UU). Sandra, thank you for showing me possibilities
(thanks for dropping the idea of publishing my thesis as a book!) and for
encouraging me to find my own way to be an academic. Rafael, thank you
for showing enthusiasm for my (sometimes a little crazy) ideas and for
always telling me that ‘it’s going to be alright’.
My interest in the concept of citizenship was sparked by my participation
in the EU-funded research project ‘DISCIT – Making persons with disabilities
full citizens’, coordinated by Bjørn Hvinden (Oslo Metropolitan University,
Norway) and Rune Halvorsen (Oslo Metropolitan University, Norway).
Special thanks go to my co-authors in that project: Rafael Lindqvist (UU),
Victoria Schuller (University of Lucerne, Switzerland), Jennifer Kline
(National University of Ireland, Galway, Ireland), Anna M. Kittelsaa
(Norwegian University of Science and Technology, Norway) and Kjetil
Klette Bøhler (Oslo Metropolitan University, Norway). Being involved in
DISCIT was a great opportunity to study disability in a European context and
meet colleagues from nine different countries. Many thanks to Roy Sainsbury
for inviting me to stay at the Social Policy Research Unit (SPRU) at the
University of York, UK. While at the University of York, I also very much
enjoyed exchanging ideas with Edmund Coleman-Fountain, Nick Ellison and
Gemma Crous. Thank you very much!
Another invitation connected to DISCIT was a short visit to the
University of Cologne, Germany. Thank you Anne Waldschmidt for
inviting me to present my research at the International Research Unit
Disability Studies (IDIS). I much appreciated our engaging conversations
about disability and citizenship, which led to our joint article ‘Citizenship:
Reflections on a Relevant but Ambivalent Concept for Persons with
Disabilities’, published in Disability and Society.
In Sweden, my research benefited a great deal from the Welfare Research
Group at the Department of Sociology (UU). Thanks to all the research
group members for your helpful comments on various drafts. I am also
viii Acknowledgements
grateful to have had the opportunity to present my work at several seminars
organised by the Swedish Network on Disability Research and at the Health
Education Seminar (Stockholm University). Moreover, I want to thank the
members of the Swedish Critical Disability Studies Network (Kritfunk) for
your support and stimulating discussions.
I learned a lot about disability in Sweden through many conversations
with disability activists and, in particular, with Lars Lindberg, Maria
Johansson and Sonja Calais van Stokkom. Discussions with Lars resulted
in the book chapter ‘Swedish disability activism: from welfare to human
rights?’, which was published in the Routledge Handbook of Disability
Activism, edited by Maria Berghs, Tsitsi Chataika, Yahya El-Lahib and
Kudakwashe Dube. Thank you for this good collaboration.
Most of my time as a PhD student was spent at Uppsala University. I
thank all the members of the administrative staff for your excellent support
during these years. I also want to thank all my colleagues and friends who
encouraged me and were willing to discuss my ideas during so many
conversations at seminars and lectures, in the corridors of the department,
during breaks in Engelska Parken, lunches at Légume, and beers at
Williams. All those who recognise themselves in these lines: Thank you
very much!! A special thanks to Pernilla Ågård, my PhD sister, for having
been such a wonderful office mate, colleague and friend.
After the doctoral thesis, the journey continued with a book. During the
process of writing this book, I was fortunate to be in great company as well,
this time in a different place. I thank Nick Watson for inviting me to spend a
few months at the University of Glasgow (UK) and making me feel at home
there. A big thank you to Ida Norberg, Thu Thuy Phan, Kevin Paterson and
Bill Hughes for welcoming me to Glasgow, discussing research ideas and
showing me nice places in your city. A special thanks to my flatmate
Maureen Macleod for all the nice conversations and for introducing me to
Scottish Gaelic language and music. My visit was interrupted due to the
corona virus, but I hope to be back soon!
This book would not have been possible without the support of Mark
Sherry, the book series editor for the ‘Interdisciplinary Disability Studies
Series’ and Claire Jarvis at Routledge. Many thanks for encouraging me to
write this book and for your smart tips and enthusiasm along the way.
I acknowledge the postdoc fellowship I received from SYLFF (the
Ryoichi Sasakawa Young Leaders Fellowship Fund) that enabled me to
write this book.
Finally, I want to thank my family and friends for being there for me. Un
grand MERCI to my parents, my siblings and their partners, and my
grandmothers for believing in me. A special thanks to Caitlin for the
realisation of the beautiful painting in Chapter 1. I also want to say a big
THANK YOU to my friends; you are my second family. In particular,
thank you Nika, Nadia, Léonor, Gwen, Anders, Thérèse, Sien, Camilla,
Acknowledgements ix
Miryam, Nando, Emanuele, the people of Fyllan, Lukas, Duncan, Derek,
Andrew and Ekrem. Your friendship and presence in my life mean so much
to me.
Marie Sépulchre
Brussels, 19 March 2020
Abbreviations
ADA Americans with Disabilities Act

CIL Centre for Independent Living
CRPD United Nations Convention on the Rights of Persons with
Disabilities
DDA Disability Discrimination Act (UK)
DIA Disabled in Action Group
DPI Disables People’s International
HCK Central Committee of the Disability Federation (Swedish:
Handikappsförbundens Centralkommitté)
ICF International Classification of Functioning, Disability and
Health
ICIDH International Classification of Impairments, Disabilities, and
Handicaps
IYDP International Year of Disabled Persons
LGBTQ Lesbian, Gay, Bisexual, Transgender and Queer
LSS The Act (1993:387) on support and service to persons with
certain functional impairments
OECD Organisation for Economic Co-operation and Development
RI Rehabilitation International
SSIA Swedish Social Insurance Agency (Swedish: Försäkringskassan)
UK United Kingdom
UN United Nations
UNCRC United Nations Convention on the Rights of the Child
UPIAS Union of the Physically Impaired Against Segregation
US United States of America
WHO World Health Organization
A note on terminology and translations
Writing in English to report a study based on the analysis of Swedish empirical

material implies a number of choices with regard to terminology and
translations. At the outset, I would like to provide a brief comment about
two terms that are central in this study: citizenship and disability. Regarding
‘citizenship’, this term has different connotations in both languages. Whereas
the British English term ‘citizenship’ refers to membership in a state, including
the ‘engagement in the duties and responsibilities of a member of society’
(Oxford English Dictionary, www.oed.com/view/Entry/33521?redirectedFrom=
citizenship#eid), the meaning of the Swedish term for citizenship
(‘medborgarskap’) is restricted to ‘a legally binding relationship that can
arise between a state and an individual’ (Nationalencyklopedin [the Swedish
National Encyclopaedia], www.ne.se/uppslagsverk/encyklopedi/lång/medborgarskap;
author’s translation). In this book, I draw upon ‘citizenship’ as an analytical
concept referring to formal membership in a state, consisting of seven ‘citizenship
building blocks’ (see Chapter 2). Similarly, this study draws upon ‘disability’ and
‘disabled people’ as analytical concepts (see Chapter 3). In short, I use the term
‘disabled people’ to speak of the category of people facing social inequalities
because of ‘disability’, which I understand as an element of social stratification.
However, when translating the quotes that I selected from the empirical material,
I also use the term ‘persons with impairments’ to reflect the Swedish term
‘personer med funktionsnedsättningar’, which was often used by the Swedish
disability activists.
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 con
template the issue of citizenship in light of the complexity of the construction
of formal membership in a state.
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 in
stitution’, 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 devel
opment 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 clai
mants, and then to all (male) adults. Thus, he argued that citizenship devel
oped according to two parameters: more citizenship rights were established,
and these rights were granted to an increasing part of the population.
Figure 1.1 ‘This is not citizenship’, painted by Caitlin Moens.
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 autho
rities. 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
‘This is not citizenship’ 3
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 be
hind the development of citizenship. This book proposes that Marshall’s
(1992) contribution offers nonetheless valuable insights to analyse the situa
tion 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 out
come, 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 re
striction 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 un
noticed 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 em
pirical 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 sup
ported 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 si
milarities 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 dis
abilities 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 si
tuation appears therefore to be contradictory because, while many govern
ments 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, Asian Americans
and disabled people. Skrentny (2002) claimed that although changes regarding
citizenship rights have not always resulted from the action of social move
ments – they could be initiated by members of the state authorities – they have
been influenced by the ‘minority rights’ thinking that was present in policy
making processes following the black civil rights movement. With respect to
the rights of disabled people, Skrentny (2002) argued that Section 504 of the
Rehabilitation Act of 1973 was passed smoothly because of the law’s assumed
analogy with the rights of black Americans. Upon implementing the law,
however, the difference between legislating equal rights for disabled people
and black Americans became salient.
[The officers at the Office for Civil rights] saw that the disabled [sic] would
require radically different and very expensive approaches to transportation,
building, and schooling for equal opportunity and non-discrimination –
approaches that had no analogues with black civil rights.
(Skrentny 2002:274)
Hence, Skrentny’s (2002) analysis calls attention to similarities and differences

between equal opportunity and non-discrimination rights for African
Americans and disabled people in the United States. This suggests, more
generally, that the construction of citizenship for disabled people is similar but
different compared to other groups of citizens. Further, Skrentny’s (2002)
quote begs the question of what exactly these ‘radically different and very
expensive approaches’ connected to the equal rights of disabled people might
be. In this respect, however, sociology has surprisingly little to say. While most
sociologists would probably intuitively agree that disability implies dis
advantages, difficulties and/or differences, it is remarkable that the topic of
disability has not much triggered the sociological imagination thus far
(Meekosha, Shuttleworth, and Soldatic 2013; Shuttleworth and Meekosha
2012). A notable exception is Jenkins (1991) who argued that disability should
be considered as an element of social stratification in its own right:
We need a conceptual framework which is adequate to the task of

thinking about the relationship between social categories of ability and
disability (and competence and incompetence) and social stratification.
(Jenkins 1991:573)
This book aims to make a contribution in this direction. At the theoretical
level, by following Jenkins’s (1991) call and conceptualising disability as an
element of social stratification pertaining to the social division of dis/ability,
which is comparable to, but distinguished from, social class, ethnicity/race
and gender (see Chapter 3), and at the empirical level, by analysing the
claims of disability activists (see Chapter 5–7).
So far, I have argued that this book explores the citizenship struggle of
disabled people, in order to understand the construction of citizenship in
relation to disability. For this purpose, this book draws upon the analysis of
a selection of written claims – blog posts and newspaper debate articles – of
activists mobilising around the issue of disability. The decision to choose the
claims of disability activists as empirical material is based on the assumption
that the claims of citizenship activists provide rich data to analyse the
construction of citizenship as a ‘developing institution’ (Marshall 1992).
This is because, if we consider that citizenship activists intend to modify the
boundaries of citizenship, it follows that their claims contain information
about the various components of citizenship – or ‘citizenship building
blocks’ – and about the activists’ perception of a given structure of social
inequality – or ‘social division’ (see Chapter 3). Citizenship activism happens
in various arenas, including in the digital sphere (Papacharissi 2010).
Disability activism is no exception as many mobilise online for the rights of
disabled people (Trevisan 2017, 2018). Therefore, I decided to analyse a
selection of claims of disability activists that are published in both online
and offline settings. The empirical material for the present research consists
of 312 blog posts and 162 debate articles (see Chapter 4).
Arguing that the claims of disability activists are suitable material is,
however, not to say that disability activism always plays a decisive role in
constructing disabled people’s citizenship. It can have a straightforward role
in disability politics. The CRPD, for example, was drafted with the parti
cipation of the international disability movement that fought for it for more
than two decades (Degener 2016; Sabatello and Schulze 2013). In other
cases, decisions to legislate equal citizenship rights for disabled people were
made without the participation of disability activists. In Sweden, the dis
ability movement has long been involved in disability politics and has pu
shed for a strong vision of full and equal participation for disabled people
(Sépulchre and Lindberg 2020). Although the movement did not take the
initiative when Sweden adopted its first anti-discrimination law regarding
disability in 1999, which prohibited discrimination in the workplace, it was
instrumental in claiming the amendment of the Discrimination Act of 2008
to recognise inadequate accessibility as a form of discrimination. Similarly,
in the United States, Section 504 of the Rehabilitation Act of 1973 passed
without the involvement of the disability movement but the movement
played a key role in requesting its implementation and pressured the
government by occupying official buildings (Scotch 2001; Skrentny 2002;
see Chapter 3). Importantly, this book recognises that, while citizenship
struggles may have a tangible role in promoting certain changes in the
formal content of citizenship, at the end of the day, only state authorities
have the power to make formal changes in citizenship (see below and
Chapter 2). From this remark, it follows that citizenship is always situated in
a particular state and contextualised in a particular territory.
Sweden, the focus of this book, is an interesting case because, while this
Scandinavian state has often been praised for having generous and uni
versal welfare benefits – based on Esping-Andersen’s (1990) typology of
welfare states – little is known with respect to the claims of the Swedish
disability activists. Contrary to what is sometimes assumed (see e.g. Hurst
1995; Shakespeare and Watson 2001), the Swedish disability movement
has not been mostly passive and content with the status quo. On the
contrary, activists have raised their voices to denounce the inequalities and
lack of opportunities faced by disabled people in Sweden (see Chapter 3).
Hence, I argued with Lindberg (Sépulchre and Lindberg 2020) that the
Swedish disability activists have promoted key ideas with respect to dis
ability right reforms in Sweden. Another reason for considering Sweden is
that this country has undergone a series of changes and, notably, changes
in terms of the organisation of social welfare (Edlund and Johansson Sevä
2013; Therborn 2017). These changes are salient with respect to, among
others, the assessment of the social rights of disabled people, which have
been subjected to severe welfare cuts (Berggren, Emilsson, and Bergman
2019; Brennan et al. 2016, 2018; Norberg 2019; Rauch, Olin, and Dunér
2018). Appraising this situation, Brennan and colleagues (2016) have
claimed that Sweden violates its obligations under the CRPD because it
has been performing welfare cuts in the measure of personal assistance.
This statement goes against the image of Sweden as a universal and gen
erous welfare state and, according to Brennan and colleagues (2018), it is
precisely the reputation of ‘being number one’ when it comes to disability
policy that impedes Sweden – and, likewise, Iceland and Norway – from
improving the implementation of equal rights for disabled people.
Hence, this book is about citizenship and disability and is based on the
analysis of the claims of disability activists in Sweden. In particular, the
analysis will address the two following questions: (1) How is citizenship
constructed for disabled people in Sweden and (2) What types of changes do
the Swedish disability activists envision?
1.1 Outline of the book

The remaining of this chapter provides an introduction to citizenship studies
in relation to disability and spells out how the notion of citizenship is defined
in this book. Next, revisiting Marshall’s (1992) analysis of the socio-historical
development of citizenship, Chapter 2 proposes that citizenship can be studied
as a social construction consisting of seven ‘citizenship building blocks’.
Besides being a theoretical concept, citizenship is an empirical notion.
The second part of Chapter 2 describes the development and organisation of
citizenship for disabled people in Sweden.
Chapter 3 focuses on disability. It starts by outlining various con
ceptualisations or ‘models of disability’ found in disability studies. Then,
drawing upon Anthias (1998) and Jenkins (1991) who started theorising
disability in terms of structural inequality, the chapter demonstrates that
disability can be conceptualised as an element of social stratification con
nected to the social division of ‘dis/ability’. The second part of Chapter 3
introduces the reader to disability activism. It describes the emergence of
disability activism in the US, the UK, Sweden and at the international level,
and concludes by pointing at challenges and opportunities for 21st-century
disability activism.
Moving on to the empirical part of the book, Chapter 4 describes the data
and methods used in the present study. The first type of data consists of the
blog ‘FullParticipation.Now’, which was written by a range of Swedish
disability activists over a period of five years (2010–2015). The second type
of data includes debate articles about disability, written by disability acti
vists and published in three main Swedish daily newspapers during the last
decade (2008–2017). The following chapters discuss the disability activists’
claims through the lens of citizenship. Chapter 5 focuses on the problems
mentioned in the blog posts and debate articles, and on the causes of these
problems, as identified by the activists. Following a similar structure,
Chapter 6 considers the solutions mentioned in the blog posts and debate
articles, and the ways forward proposed by the disability activists. As such,
Chapters 5 and 6 explore the types of changes envisioned by the Swedish
disability activists. Using the conceptual framework elaborated in this book,
I highlight how the disability activists’ claims refer to the various citizenship
building blocks and to the social division of dis/ability. Chapter 7 takes the
analysis a step further and considers each citizenship building block sepa
rately, in light of the analysis of the blog posts and debate articles, before
discussing the nature of the changes envisioned by the Swedish disability
activists. Finally, the book concludes by summarising the main findings of
the study, pointing at avenues for future research, making recommendations
for politicians and policy makers and outlining take home messages for
disability activists.
For a reader less theoretically inclined, I suggest starting with Chapters 4, 5
and 6, then reading Chapters 2 and 3, and ending with Chapter 7.
1.2 Citizenship studies and disability

It seems unavoidable to start a book on citizenship without referring to its
two main conceptions in political theory, namely civic-republican and liberal
citizenship. These two classic conceptions of citizenship are a good starting
point to get acquainted with the topic for at least three reasons. First, they
are interesting from a historical point of view; they tell us how membership
in a society was organised in Ancient Greece and Rome, respectively.
Second, they represent two distinct ways of defining citizenship: through
citizenship activity and through citizenship rights. Third, these two con
ceptions of citizenship, which are underpinned by normative ideals re
garding personhood and capacities that have exclusionary consequences for
disabled people, continue to influence how we think about citizenship today
(see Section 1.2.3).
In the civic-republican conception, citizenship is conceived of as a set of
duties and political obligations, with emphasis on participation in the
common good and public affairs. According to Dagger (2002), the essential
elements of republicanism are publicity and self-government. Publicity refers
to the condition of being open and public rather than private or personal, and
self-government means both the government of the political community by the
citizens themselves and the ability of the citizens to act reasonably and ac
cording to the rule of law (Dagger 2002). Moreover, republican citizenship
stresses civic virtue, implying that citizens need to get educated to commit to
the common good – rather than focus on particular interests (Honohan 2017) –
and become ‘good citizens’ (Dagger 2002). The origins of republicanism can be
traced back to Ancient Greece, where citizens participated directly in the
government of the city-state (Barbalet 1988). This tradition of thought was
further elaborated by Rousseau, Kant and others who developed the idea of
a social contract between individuals and the state and characterised a
person as being self-governing and rational (Arneil 2009).
Whereas the republican conception of citizenship focuses on political ac
tivity in the public sphere, the liberal conception of citizenship stresses legal
status and rights (Honohan 2017). The history of liberal citizenship can be
traced back to the Roman Empire where citizenship became a legal status
providing rights to legal protection, no longer with ‘any strong connection to
actual practices of self-governance’ (Smith 2002:106). In other words, citi
zenship became rights-based, instead of virtue-based (Cohen 2009). Modern
conceptions of liberal citizenship build on 17th-century liberal theory as for
mulated by Locke (Arneil 2009), who stressed individual freedom and viewed
property and reason as its main conditions (Schuck 2002). Liberal citizenship
is sometimes characterised as ‘passive’ or ‘private’ citizenship because it em
phasises the enjoyment of rights, in contrast to citizenship as a practice or
‘active’ citizenship (Burchell 2002; Kymlicka and Norman 1994).
Thus, the two classic conceptions of citizenship in political theory view
citizenship in terms of political participation (in the civic-republican con
ception of citizenship) or as a set of individual liberties and rights (in the
liberal conception of citizenship).
1.2.1 A multi-disciplinary research field

Originally a topic for political science and philosophy, citizenship became
a relevant object of study in the social sciences (Turner 1997). The field of
citizenship studies started gaining momentum towards the end of the
20th-century and is now a multi-disciplinary field of study with a wide
variety of research topics (Isin and Turner 2002; Shachar et al. 2017). This
section provides an overview of the topics that citizenship scholars have
addressed.
Citizenship scholars have examined the spaces where citizenship is played
out (Desforges, Jones, and Woods 2005). Citizenship is traditionally con
nected to the public sphere of society and defined in contrast to the private
sphere of the home (Papacharissi 2010; Walby 1994). However, scholars
have pointed out that, apart from the arena of politics, citizens are active in
the community (Lister 2003) and in the digital sphere (Papacharissi 2002,
2010). Further, drawing upon the feminist insight that ‘the personal is po
litical’, scholars have framed a range of topics, such as sexuality, the body
and care, in terms of citizenship (Lister 2002; Sevenhuijsen 2000; Bahner
2020) and proposed, among others, the concepts of ‘intimate citizenship’
(Plummer 2001) and ‘domestic citizenship’ (Das and Addlakha 2001).
While citizenship in Ancient Greece was linked to the city-state, modern
citizenship has been connected to the nation-state (Brubaker 1990). However,
some have argued that citizenship lost its relevance in contemporary society
because of the weakening of the nation-state (Bosniak 2000). In contrast,
others have argued that citizenship became even more important in a context
of globalisation because it is a status that the nation-state can still control, not
least by defining who can get access to a given national territory (Dauvergne
2007). Contemporary citizenship scholars have interrogated the link between
citizenship and the state (Glenn 2000; Sassen 2002) and examined the various
‘scales of citizenship’ (Desforges et al. 2005; Diener 2017). Among others,
scholars have examined the nature of European citizenship (Barbulescu and
Favell 2020; Delanty 1997), the possibilities of cosmopolitan citizenship
(Caraus 2018; Linklater 2002), the forms of urban citizenship (Bezmez 2013;
Holston 2008), and the relationship between human rights and citizenship
rights (Turner 1993, 1997).
Further, citizenship scholars have studied citizenship at the level of the
individual. Citizenship has been conceived of as a ‘social identity’ (Joppke
2007; Kymlicka and Norman 1994; Turner 1997) and analysed in terms of
‘belonging’ (Antonsich 2010; Bloemraad, Korteweg, and Yurdakul 2008;
Yuval-Davis 2011). Scholars have highlighted the importance of studying
‘lived experiences’ of citizenship (Glenn 2011; Jones and Gaventa 2002;
Lister et al. 2003; Moon 2012; Patrick 2017; Rowe and Pelletier 2012;
Singleton and Fry 2015). Citizenship studies analysed, for example, how
individuals negotiate various types of citizenship in terms of ‘flexible citi
zenship’ (Ong 1999), perform various ‘acts of citizenship’ (Isin 2008), and
claim their citizenship rights through different types of citizenship ‘engage
ment’ (Ellison 2000) and through ‘insurgent citizenship’ (Holston 2009).
An important feature of citizenship is that it traces the boundaries of
membership in a community. Citizenship is therefore both inclusionary
and exclusionary (Lister 2003; Vogel 1991). Considering the exclusion
happening around the borders of a nation-state, scholars studied, among
others, the situation of labour migrants who are only granted partial
citizenship in their host country (Parreñas 2001), the changes in regula
tions for naturalisation (e.g. Brochmann and Seland 2010; Hansen and
Koehler 2005), the challenges of immigration (e.g. Bloemraad et al.
2008), and the various situations of ‘noncitizens’ (e.g. Benton 2014;
Bosniak 2006; McNevin 2007; Schierup and Alund 2011; Tonkiss and
Bloom 2015). Scholars have also noted the cultural diversity inside
countries and explored the notion of ‘cultural citizenship’ (Flores 2003;
Kymlicka 1995; Stevenson 2001). Apart from differences in citizenship
around national boundaries, scholars have considered differences and
inequality between citizens within national boundaries and the influence
of citizenship on the (re-)distribution of scarce resources (Turner 1997).
Studies have examined the situation of citizens who do not have full
access to citizenship rights, be it because of their assumed capacities
(Clifford 2014), gender (Lister 2003; Vogel 1991; Walby 1994), con
tributions in the labour market (Dwyer 1998; Patrick 2011) or ethnic
origins (Barreto and Lozano 2017).
This general overview suggests that the field of citizenship studies includes
a wide range of research topics. However, not all topics have received equal
attention. Of particular relevance for the present study is that, as
Watermeyer and colleagues (2019) noted, few citizenship scholars have ad
dressed the topic of disability (see also Beckett 2005; Hirschmann and
Linker 2015; Walmsley 1991).
[W]e are also centrally concerned with the effacement of disability issues
in citizenship debates in the broadest context. Just as it is no longer
possible to discuss any aspect of citizenship without considering gender
inequality as part of the equation, it should not be possible to address
citizenship without thinking about disability.
(Watermeyer, Mckenzie, and Swartz 2019:2)
Yet the fact that citizenship scholars have not shown much interest in the
topic of disability does not imply that the notion of citizenship has not
been used in relation to disability, quite the contrary. Based on a scoping
review of the articles about citizenship and disability published between
1985 and 2015, I found that the notion of citizenship is increasingly used in
relation to disability but that most of this research does not explain
how it understands citizenship (Sépulchre 2017). Thus, it appears that the
notion of citizenship is used in research about disability but that few
disability scholars draw upon citizenship as an analytical concept or po
sition themselves in the field of citizenship studies (notable exceptions are
e.g. Altermark 2017; Beckett 2006; Caldwell, Harris, and Renko 2012;
Emery 2009).
1.2.2 Disability and citizenship
This section presents an overview of the different ways in which disability
research has worked with the concept of citizenship.
A number of studies about disability refer to citizenship to point at the
ideal of including disabled people in society (e.g. Chouinard 2001; Darcy,
Maxwell, and Green 2016; Halvorsen et al. 2018; McCausland et al. 2018;
Oliver 1992). These studies typically argue that although disabled people
have been granted full citizenship rights on paper, they do not enjoy these
rights in practice. For example, Oliver (1992:1) claimed that ‘to be disabled
in Britain today is to be denied the rights of citizenship’, and Morris (2005:1)
provided an analysis of the barriers that need to be tackled for ‘enabling
disabled people to be equal citizens’ in the UK. Also viewing citizenship as
an inclusionary ideal, some recent studies examined whether disabled people
can exercise citizenship, while positioning the topic against the backdrop of
the CRPD. For example, McCausland, McCallion, Brennan and McCarron
(2018:875) argued that ‘[t]he UN Convention on the Rights of Persons with
Disabilities (CRPD) provides the benchmark for assessing human rights and
citizenship for people with disabilities’. Another example of studies using
citizenship to conceptualise the ideal of inclusion, the EU-funded research
project entitled ‘DISCIT – Making Persons with Disabilities Full Citizens’
examined the factors fostering or hampering Active Citizenship for disabled
people (Halvorsen et al. 2017, 2018; Sépulchre and Lindqvist 2016). In the
same vein, Darcy, Maxwell, and Green (2016) examined whether technology
increases disabled people’s citizenship, understood as social participation.
Hence, this type of research calls attention to the gap between citizenship de
jure and citizenship de facto, and points at ways forward to enhance the
citizenship of disabled people.
In contrast, other studies focus on revealing the exclusionary aspects of
citizenship. Scholars have argued that disabled people are ‘shadow citizens’
(Chouinard 2001), ‘absent citizens’ (Prince 2009), ‘dis-citizens’ (Devlin and
Pothier 2006), ‘counterfeit citizens’ (Hughes 2015) and are living ‘on the
margins of citizenship’ (Carey 2009). Some of these studies criticise the
normative ideals of rationality and independence underpinning the classic
conceptions of citizenship in political theory and claim that these ideals
exclude disabled people (e.g. Altermark 2017; Armstrong 2002; Arneil 2009;
Carey 2009; Clifford 2014; Meekosha and Dowse 1997; Rapp and Ginsburg
2001; Redley and Weinberg 2007). Arneil (2009) argued that political theory
has placed disability outside the realm of personhood and citizenship, with
far-reaching consequences for disabled people. Further, Altermark (2017)
observed that contemporary politics intending to foster the inclusion of
disabled people as citizens are in fact exclusionary because based on the
ideals of rationality and autonomy found in the classic conceptions of citi
zenship in political theory (see also Redley and Weinberg 2007). Similarly,
offering a critical perspective on the promise of inclusion of citizenship and
highlighting the exclusionary consequences of asking disabled people to
adapt to the template of the able-bodied citizen in a capitalist system,
Erevelles (2002:5) claimed that ‘citizenship serves as a metaphor for control
by masquerading as the protector of rights’ (see also Armstrong 2002).
Likewise, other scholars criticised neoliberal understandings of citizenship
and the notion of ‘active citizenship’ for excluding disabled people
(Meekosha and Dowse 1997; Titchkosky 2003). In general, the studies cri
ticising citizenship for being exclusionary point out that current under
standings of citizenship are at odds with the situation of disabled people.
For example, Meekosha and Dowse (1997) stated:
[T]he idea of active citizenship is shaped according to a male, middle-

class, white, western and able-bodied way of living. Its language of
activity, productivity and capacity does not leave much room for bodies
that require care, for needs and vulnerabilities or rather for differences
between people in their abilities, activities and needs.
(Meekosha and Dowse 1997:61)
Focusing on the built environment, Hastings and Thomas (2005) claimed that
disabled people are excluded from citizenship because of the non-accessible
design of parliament buildings. Likewise, Snyder and Mitchell (2010) coined
the term ‘ablenationalism’ to discuss the ableist assumptions of citizenship in
nation-building processes (see also Schweik 2011). Considering the history of
citizenship, some studies have pointed out that disabled people have long been
excluded from society and noted that ‘[t]hroughout most of Western history,
disabled people have also been treated as second-class citizens’ (Hirschmann
and Linker 2015:9). Walmsley (1991) asserted that rather than gaining citi
zenship rights, people with learning difficulties had their civil and political
rights curtailed at the turn of the 20th century (see also Carey 2003, 2009;
Valentine and Vickers 1996). Also taking a historical perspective on citizen
ship, Baynton (2001, 2005) claimed that not only have disabled people been
excluded from citizenship, the category of disability has been used to justify the
exclusion of women and minority groups, on the grounds that they were not
capable of citizenship because of their supposed mental and physical weak
nesses (see also Montesino 2012). Overall, this research has pointed out that
the notion of citizenship implies many exclusionary features with respect to
disability. While some of this research rejects the idea of citizenship altogether,
other studies conclude that citizenship needs to be ‘re-imagined’ (Rapp and
Ginsburg 2001) to accommodate the situation of disabled people (Arneil 2009;
Beckett 2006; Carey 2009; Dermaut et al. 2019; Hastings and Thomas 2005;
van Houten and Jacobs 2005; Meekosha and Dowse 1997).
Rather than considering it straightforwardly inclusive or exclusive, var
ious studies have called attention to the ambivalence of citizenship in relation
to disability (Caldwell et al. 2012; Carey 2009; Gilbert, Cochrane, and
Greenwell 2005; Hirschmann and Linker 2015; Mckearney 2017; Meekosha
and Dowse 1997; Rioux and Valentine 2006; Waldschmidt and Sépulchre
2019). Looking at the conceptions of citizenship in services for people with
learning disabilities, Gilbert, Cochrane, and Greenwell (2005) maintained
that the co-existence of different understandings of citizenship creates a
number of contrasting citizenship positions for disabled people. Further,
Rioux and Valentine (2006) observed that Canadian disability policies are
underpinned by contradictory conceptions of citizenship for disabled
people, ranging from charity to equality. By the same token, tracing the
history of citizenship for people with intellectual disabilities in the US, Carey
(2009) reasoned that this history features struggles between different groups,
including disabled people, their parents and professionals. She concluded
that citizenship needs to be considered in relation to its context because ‘[i]n
practice, rights can both empower individuals with intellectual disabilities
and bring them into systems of regulation and control (Carey 2009:31).
Similarly, Emery (2007) demonstrated how the notion of citizenship has
been used to both include and exclude Deaf children and asserted that
current understandings of citizenship could be renegotiated by Deaf people;
[t]he new social contract would aim not for a paternal and audist citizenship,
but an empowering and Deaf-led one (Emery 2009:42). Furthermore,
Beckett (2006) proposed a reconceptualisation of citizenship in light of the
recognition that all human beings are vulnerable (see also Lid 2015). Hence,
this research offers a nuanced exploration of citizenship in relation to dis
ability, taking into account its in/exclusionary underpinnings.3
Apart from studies considering citizenship in general, some studies focus
on one particular aspect of citizenship. In my scoping review, I found that
articles about citizenship and disability tend to discuss citizenship in terms of
access to social rights (Sépulchre 2017). While many of these studies mention
in passing that welfare is a matter of social citizenship, some use it as an
analytical concept (Christensen, Guldvik, and Larsson 2014; Rummery
2006; Rummery and Glendinning 2000; Rummery and Jordan 2004).
Drawing upon Marshall (1992), Rummery (2006) pointed out that the social
rights of disabled people should be viewed in light of their involvement in
society. Further, Christensen, Guldvik, and Larsson (2014) compared how
personal assistance is organised in Sweden, Denmark and Norway in rela
tion to three different understandings of active citizenship and, conse
quently, different understandings of citizenship rights and duties (see also
Bay, Pedersen, and Finseraas 2014; Hästbacka and Nygård 2013). By
drawing upon social citizenship as an analytical concept, these studies call
attention to the complexity of issues relative to welfare benefits.
Some studies look at the dimension of citizenship as a political activity and
focus on the political participation of disabled people (Beckett 2006; Bezmez
2013; Bezmez and Yardimci 2010; Guldvik and Lesjø 2014; Phillips 2011;
Priestley et al. 2016; Trevisan 2017). Here, we can distinguish between stu
dies about collective and individual political participation. With regard to
the former, a number of studies have considered disability activism in a
variety of geographical contexts – ranging from the US (Driedger 1989;
Shapiro 1993) and Canada (Prince 2001, 2009; Valentine and Vickers 1996)
to the UK (Barnes 1999; Barton 1993; Beckett 2006), Ukraine (Phillips
2011), Malaysia (Jayasooria 1999), Turkey (Bezmez and Yardimci 2010) and
Sweden (Sépulchre 2018; Sépulchre and Lindberg 2020). Apart from tradi
tional channels of political participation, some studies have highlighted that
digital technology offers new possibilities for the effective political engage
ment of disabled people (Bezmez and Yardimci 2010; Pearson and Trevisan
2015; Trevisan 2014, 2017, 2018). Further, some studies have focused on the
organisation of disability activism and pointed at the challenges relative to
the internal diversity of the disability movement (Barton 1993; Meekosha
2002). Regarding individual political participation, scholars have examined
practices such as voting (Bay et al. 2014; Keeley et al. 2008; Kjellberg 2002;
Kjellberg and Hemmingsson 2013) and participating in consultation bodies
(Frawley and Bigby 2011; Redley and Weinberg 2007).
Other studies understand citizenship as an embodied and lived experience
(Gaete-Reyes 2015; Hastings and Thomas 2005; Hirschmann and Linker
2015; Wiseman 2014; Yardimci and Bezmez 2018). For example, Yardimci
and Bezmez (2018) analysed the everyday life experiences of disabled people
as ‘urban citizens’ in Istanbul. Similarly, Gaete-Reyes (2015) looked at the
‘embodied citizenship’ experiences of women wheelchair users living in
Greater London and Leicestershire. Further, Wiseman (2014) examined the
narratives of disabled young people in the UK through the lens of ‘embo
died citizenship’, including intimate and sexual citizenship (see also Hough
2012; Ignagni et al. 2016; Liddiard 2014; Morrow, Hankivsky, and Varcoe
2004; Rogers 2009; Sanders 2007; Shildrick 2007). In the same vein, my
colleagues and I described the lived experiences of disabled women, starting
from the insight that both disability and citizenship are gendered (Sépulchre
et al. 2018). By adopting an everyday life perspective on citizenship, this
body of research discusses how aspects of intimacy, sexuality, gender and
mundane interactions feature membership in society.
A handful of studies on disability centre on citizenship as civil rights. In
the context of Canada, Chouinard (2001) has called attention to the barriers
relative to civil rights from an intersectional perspective and argued that
disabled people, and in particular disabled women, have unequal access to
justice. Whereas the great majority of studies about citizenship and disability
are – often implicitly – about the disabled population of a given country, a
few studies have examined the relationship between citizenship and dis
ability at the intersection of migration. For example, Lyons (1999) argued
that the process of naturalisation in the US excludes persons with cognitive
disabilities who cannot fulfil the requirement to demonstrate their belief in
the principles of the Constitution. Likewise, Menzies (1998:135) highlighted
how immigrants labelled ‘insane’ or ‘feebleminded’ were deported out of
British Columbia because they ‘failed to meet the mental standards for
Canadian citizenship’. Further, Burns (2019) examined the intersections
between migration and disability in contemporary society and Straimer
(2011) called attention to the barriers met by disabled refugees seeking
asylum in Europe.
This brief overview of the ways in which the concept of citizenship has been
used in studies about disability suggests a number of things. First, citizenship
can be applied to study a variety of social phenomena relative to the re
lationship between disabled people and society. Second, most studies take for
granted that disabled people are nationals of a given country and pay little
attention to the context of migration and globalisation.4 Third, many studies
that draw on citizenship form clusters around a type of research interest – e.g.
they focus on the exclusionary aspects of citizenship with regard to disability
or on the social rights of disabled people – without making connections with
studies highlighting other aspects of citizenship. I suggest that this feature,
combined with the fact that many studies do not define how they understand
citizenship, gives the impression that citizenship is a ‘catch-all concept’.
However, if we link these different studies to the broader field of citizenship
studies, it appears that they do not catch ‘anything’ but focus on different
aspects regarding the membership of disabled people in society. Discussing
this concept, Caldwell and colleagues (2012) concluded that citizenship offers
a useful conceptual tool for researchers, policymakers and practitioners to
analyse the complexity related to the participation of disabled people in so
ciety and improve the communication between disciplines. I concur and
propose that, when problematised and connected to citizenship studies, citi
zenship ceases to be a ‘catch-all’ concept and becomes a ‘complex’ concept.
Hence, I suggest that citizenship is a useful concept to analyse the membership
of disabled people in a given state, which is a complex issue in itself.
1.2.3 Outlining the concept of citizenship for this book

The previous section showed that the notion of citizenship has been used in a
myriad of ways to study a variety of topics. This section describes how ci
tizenship is understood in this book. First, as mentioned previously, the two
main conceptions of citizenship in political theory are the civic-republican
and liberal conceptions, which focus on citizenship as an activity and citi
zenship as rights, respectively. Recognising the importance of both having
rights and being able to act as a citizen, some scholars have combined these
two traditions and claimed that citizenship is a status and a practice (see e.g.
Lister 2003). However, Cohen (2009:48) warned against the conflation of the
two conceptions of citizenship because, at the empirical level, ‘acting like a
citizen cannot on its own make one a citizen […] nor is it the case that
passive citizens will have their citizenship revoked’. Similarly, Kymlicka and
Norman (1994:353) maintained that conflating the civic-republican and
liberal approaches to citizenship is problematic because ‘we should expect a
theory of the good citizen to be relatively independent of the legal question
of what it is to be a citizen’. In this book, I choose a rights-based definition of
citizenship because, as will be outlined in Chapter 2, I want to examine the
construction of citizenship as a formal institution defined by legal rights.
Second, while some scholars have used the concept of citizenship to study
various aspects relative to membership in society, others limit its use to study
membership in a state. While the former understanding includes both formal
and informal relations, the latter focuses on formal relations defined by legal
rights. This book adopts the latter understanding and views that, at its core,
citizenship concerns membership in a state. From this definition, it follows
that this book recognises that only state authorities can grant formal
citizenship rights (Cohen 2009).
Third, this book views that citizenship is used by the state to organise its
membership. This process of categorisation is dynamic because ‘[t]he qualities,
qualifications, social meaning, benefit, and boundaries are all subject to change
(Cohen 2009:33). Moreover, understanding citizenship as a category organising
membership in a state implies that citizenship is both inclusionary and exclu
sionary because it includes some people and excludes others from membership
in a given state. Importantly, rather than forming a dichotomy between citizens
and non-citizens, citizenship is a ‘gradient category’ (Cohen 2009) because of
various reasons. First, while some individuals are formally granted all the ci
tizenship rights and others none, many persons have access to some rights and
are therefore ‘semi-citizens’ (Cohen 2009). Second, citizenship consists of dif
ferent rights, which are managed by different state authorities (Marshall 1992).
Since different state authorities have different interpretations of laws and reg
ulations, there is a gap between ‘the normative bases of rules regarding who is
entitled to citizenship and actual policies of citizenship’ (Cohen 2009:37). Third,
next to formal restrictions, citizens have different access to citizenship rights in
practice because of structural inequality (Marshall 1992).
In sum, this book understands citizenship as a formal category consisting
of legal rights, which are granted by various state authorities and define, in a
gradient way, membership in a state.
Notes
1 Marshall is often referred to as ‘T. H. Marshall’ to avoid confusing with the
economist Alfred Marshall upon whom T. H. Marshall commented in his essay.
However, since I only refer to T. H. Marshall in this book, I will henceforth refer
to him as ‘Marshall’.
2 It is important to note that the CRPD includes human rights rather than citi
zenship rights. A difference between human and citizenship rights is that, while the
former are conferred to all human beings, the latter are only granted to formal
members of a state (Turner 1997). However, the CRPD is connected to citizenship
because its ratification by individual states shows the political commitment of
these states to ‘promote, protect and ensure the full and equal enjoyment of all
human rights and fundamental freedoms by all persons with disabilities, and to
promote respect for their inherent dignity’ (CRPD, Art. 1). For a discussion of
citizenship and human rights in relation to disability, see Waldschmidt and
Sépulchre (2019).
3 For a discussion about the ambivalence of citizenship in relation to disability, see
Waldschmidt and Sépulchre (2019).
4 The present study is based on the analysis of a wide range of claims of Swedish
disability activists. It does not discuss the aspect of migration because this was not
a topic that was raised by the disability activists. However, the fact that I only
selected claims published in Swedish may have limited the possibility for finding
claims about migration, expressed by non-Swedish speaking disability activists.
Hence, there is a need for more research on disability and citizenship focusing on
migration and nationality.
1 This overview draws upon the document produced by the Swedish Association of
the History of Disability (HandikappHistoriska Föreningen), Dates – from the
History of Disability [Åratal – ur Handikapphistorien] (Bergval and Sjöberg 2012).
2 Public transport is often provided in collaboration with the municipalities.
1 For a critical use of this association, see Shakespeare (2006).
2 In this book, I will use the split term ‘dis/ability’ as well; albeit in a slightly dif
ferent way (see Section 3.3).
3 This observation corresponds to Marshall’s (1992) argument that the differ
entiated legal statuses, which corresponded to different social classes in the Middle
Ages, were progressively replaced by a single status of citizenship, when privileges
were abolished and larger parts of the population were granted equal civil rights.
4 A notable exception is Chatzitheochari and Platt’s (2019) recent study about the
causal mechanisms explaining inequality in educational attainment between dis
abled and non-disabled children.
5 Jenkins’s (1991) distinction between impairment, disability and handicap is re
miniscent of the ICIDH classification of the WHO (see Section 3.1) in which
‘impairment’ refers to bodily dysfunction, ‘disability’ to the loss of a function or
ability as a consequence of impairment, and ‘handicap’ to the disadvantages re
sulting from disability. However, Jenkins (1991) does not explicitly draw upon the
analytical distinction between disability and handicap to make his argument.
Therefore, I will only use the term ‘disability’ in the following, in order to stay in
line with the general terminology used in this book.
6 It is important to note that the following account is based on the literature pub
lished in English and is therefore biased towards the English-speaking world.
7 For a more detailed account of the history of Swedish disability activism in
English, see Sépulchre and Lindberg (2020).
8 In Sweden, the difference between organisations of/for disabled people is not as
strict as suggested by Oliver (1990). For example, some organisations were created
by disabled people, then controlled by non-disabled people and then controlled
again by disabled people (see Sépulchre and Lindberg 2020).
9 FUB started as an organisation of parents of children with intellectual impair
ments in 1952 and focused on education, transport and housing (FUB 2020).
10 A number of recent studies have, however, pointed at a re-increase in residential
care in the Nordic countries (Brennan et al. 2018; Tøssebro et al. 2012).
11 Service apartments implied that a number of disabled people lived in their own
apartments, which were located in the same building, and shared a team of as
sistants (Berg 2007).
12 Notable exceptions are Bartoszko and colleagues (2012) who analysed the use of
references to the Holocaust by disability activists in Norway, and Prince (2012)
who discussed the claims of disability activists in Canada in terms of social liberal
and neo-liberal political discourses.
1 The original title in Swedish is FullDelaktighet.Nu.
2 ifA stands for the interest organisation for those eligible for personal assistance
(Intressegruppen för assistansberättigade); ILI stands for Independent Living
Institute; STIL stands for the Founders of Independent Living in Sweden
(Stiftarna av Independent Living i Sverige).
3 DHR stands for Participation – Drive – Freedom of Movement (Delaktighet –
Handlingskraft – Rörelsefrihet).
4 One additional blog post was published in May 2016. However, this blog post was
not included in the analysis as it did not contain a claim but was a disclaimer that
the bloggers are not responsible of the use of the expression ‘Full Participation’ in
other political arenas.
5 Threads are a series of blog posts published under a common topic in a given blog.
6 This book can be ordered free of charge via the blog’s website.
7 Since the daily newspapers are in Swedish, I searched for the following terms in
Swedish: funktionshinder, funktionsvariation, funktionsnedsättning, funktions
nedsättningar, handikapp, funktionsnedsatt, funktionsnedsatta, funktionshindrad,
handikappad, and handikappade.
8 Two bloggers mentioned in their posts that they have a disabled parent and a
disabled child respectively, but I did not include them in the category of ‘family
member of a disabled person’ because these bloggers identified themselves pri
marily as a member of a disability organisation and an independent activist with
the experience of disability, respectively.
1 All the quotes have been translated from Swedish to English by the author.
2 It is worth noting that Adolf Ratzka, the author of the quote, is also the activist
who introduced the idea of personal assistance in Sweden (see Chapter 3).
3 In Sweden, RUT is the acronym used to refer to the tax deductions that a private
person can make when hiring someone to do cleaning, maintenance or laundry
work (Skatteverket 2019).
4 The literal translation of the Swedish word ‘funktionsnedsättning’ is ‘impairment’
and this is the term used in the Discrimination Act of 2008. However, the English
website of the Equality Ombudsman in Sweden, which is the state agency that is
responsible for the implementation of the Discrimination Act, translates it
as ‘disability’. Hence, I translated the quote with the term ‘disability’, which is
also the term used in other discrimination laws, e.g. the American ADA of 1990
and the British Equality Act of 2010.
5 It is worth noting that Vilhelm Ekensteen, the author of the quote, is also the
author of the influential debate book ‘On the People’s Home’s Backyard’
(Ekensteen 1968) (see Chapter 3).
6 Rather than being speculations, the activist’s critique regarding the veracity of the
cheating figures has found support in empirical studies. In their study about the SSIA’s
assessment method, Altermark and Nilsson (2017) demonstrated that the alleged
numbers of cheaters regarding personal assistance in Sweden – estimated to have
costed ‘billions’ of Swedish crowns – were in fact based on a loose estimation of experts
at the SSIA, which cannot be taken as a valid method to calculate these figures.
7 Here, the quote probably refers to the term ‘normate’, which was coined by
Rosemary Garland-Thomson (1997) to critically appraise the idea that non-
disabled people match the normative standards of the ideal body.
1 The report in question is Alltjämt Ojämlikt! Levnadsförhållanden för Vissa Personer
med Funktionsnedsättning [Still Unequal! The Living Conditions of Certain Persons
with Impairment] (Swedish National Board of Health and Welfare 2010).
2 ‘Attention’ is a countrywide organisation for people with neuropsychiatric im
pairments, their relatives and professionals in Sweden.
3 For a discussion about the new approach introduced by the LSS Act, see
Lewin (1998).
4 Some Swedish disability activists use the term ‘norm-breaking functionality’
instead of ‘impairment’ to signify that disabled people are not lacking anything but
have a different bodily function.
1 See the discussion with regard to the relevance of citizenship and human rights for
disabled people in Waldschmidt and Sépulchre (2019).
2 For a further discussion of costs in disability politics, see Sépulchre (2020).
3 A similar situation was noted by Garthwaite (2014) in a study about the situation
of disabled people in England, which mentions ‘the fear of the brown envelope’.
4 The formulation in terms of ’myths’ refers to Cohen (2009) who claimed that
Marshall’s (1992) analysis of the development of citizenship in England created a
‘myth of full citizenship’, because some citizenship researchers start from the as
sumption that citizens effectively possess the full range of civil, political and social
rights in contemporary Western democracies (see Section 2.7).
5 For example, the fact that Sweden – like other Scandinavian countries – is
sometimes viewed as ‘number one’ when it comes to disability politics (Brennan
et al. 2018).
6 Building residential institutions for disabled people is contrary to the CRPD
(Pyaneandee 2019). However, although Sweden ratified the CRPD and its optional
protocol, this international treaty does not have the status of law in Sweden.
References
Altermark, N. 2017. Citizenship Inclusion and Intellectual Disability. London:
Routledge.
Anthias, F. 1998. ‘Rethinking Social Divisions: Some Notes towards a Theoretical
Framework.’ Sociological Review 46(3):505–35.
Antonsich, M. 2010. ‘Searching for Belonging – An Analytical Framework.’
Geography Compass 4(6):644–59.
Armstrong, D. 2002. ‘The Politics of Self-Advocacy and People with Learning
Difficulties.’ Policy and Politics 30:333–45.
Arneil, B. 2009. ‘Disability, Self Image, and Modern Political Theory.’ Political
Theory 37(2):218–42.
Bahner, J. 2020, Sexual Citizenship and Disability: Understanding Sexual Support in
Policy, Practice and Theory. Abingdon: Routledge.
Barbalet, J. M. 1988. Citizenship: Rights, Struggles and Class Inequality. Milton
Keynes: Open University Press.
Barbulescu, R. and A. Favell. 2020. ‘Commentary: A Citizenship without Social
Rights? EU Freedom of Movement and Changing Access to Welfare Rights.’
International Migration 58(1):151–65.
Barnes, M. 1999. ‘Users as Citizens: Collective Action and the Local Governance of
Welfare.’ Social Policy & Administration 33(1):73–90.
Barreto, A. A. and K. Lozano. 2017. ‘Hierarchies of Belonging: Intersecting Race,
Ethnicity, and Territoriality in the Construction of US Citizenship.’ Citizenship
Studies 21(8):999–1014.
Barton, L. 1993. ‘The Struggle for Citizenship: The Case of Disabled People.’
Disability, Handicap & Society 8(3):235–48.
Bay, A.-H., A. W. Pedersen, and H. Finseraas. 2014. ‘Comfort in Numbers? Social
Integration and Political Participation among Disability Benefit Recipients in
Norway.’ European Journal of Social Security 16(290):290–307.
Baynton, D. 2001. ‘Disability and the Justification of Inequality in American
History.’ Pages 33–57 in The New Disability History, edited by P. K. Longmore
and L. Umansky. New York: New York University Press.
Baynton, D. 2005. ‘Slaves, Immigrants, and Suffragists: The Uses of Disability in
Citizenship Debates.’ Modern Language Association 120(2):562–567.
Beckett, A. 2005. ‘Reconsidering Citizenship in the Light of the Concerns of the UK
Disability Movement.’ Citizenship Studies 9(4):405–421.
Beckett, A. 2006. Citizenship and Vulnerability: Disability and Issues of Social and
Political Engagement. Basingstoke: Palgrave Macmillan.
Beebe, J. 1981. ‘The Trickster in the Arts.’ The San Francisco Jung Institute Library
Journal 2(2):22–54.
Benton, M. 2014. ‘The Problem of Denizenship: A Non-Domination Framework.’
Critical Review of International Social and Political Philosophy 17(1):49–69.
Berggren, U. J., U. M. Emilsson, and A. Bergman. 2019. ‘Strategies of Austerity
Used in Needs Assessments for Personal Assistance – Changing Swedish Social
Policy for Persons with Disabilities.’ European Journal of Social Work Retrieved
18 March 2020 (https://doi.org/10.1080/13691457.2019.1639627).
Bezmez, D. 2013. ‘Urban Citizenship, the Right to the City and Politics of
Disability in Istanbul.’ International Journal of Urban and Regional Research
37(1):93–114.
Bezmez, D. and S. Yardimci. 2010. ‘In Search of Disability Rights: Citizenship and
Turkish Disability Organizations.’ Disability & Society 25(5):603–615.
Bloemraad, I., A. Korteweg, and G. Yurdakul. 2008. ‘Citizenship and Immigration:
Multiculturalism, Assimilation, and Challenges to the Nation-State.’ Annual
Review of Sociology 34(1):153–179.
Bosniak, L. 2000. ‘Citizenship Denationalized (The State of Citizenship
Symposium).’ Indiana Journal of Global Legal Studies 7(2):447–509.
Bosniak, L. 2006. The Citizen and the Alien: Dilemmas of Contemporary Membership.
Princeton, NJ: Princeton University Press.
Brennan, C., R. Traustadóttir, P. Anderberg, and J. Rice. 2016. ‘Are Cutbacks to
Personal Assistance Violating Sweden’s Obligations under the UN Convention on
the Rights of Persons with Disabilities?’ Laws 5(2) Retrieved 18 March 2020
(https://doi.org/10.3390/laws5020023).
Brennan, C., R. Traustadóttir, J. Rice, and P. Anderberg. 2018. ‘“Being Number
One Is the Biggest Obstacle”: Disabilities within Nordic Welfare Services.’ Nordic
Welfare Research 3(1):18–32.
Briant, E., N. Watson, and G. Philo. 2013. ‘Reporting Disability in the Age of
Austerity: The Changing Face of Media Representation of Disability and
Disabled People in the United Kingdom and the Creation of New “Folk Devils”.’
Disability & Society 28(6):874–89.
Brochmann, G. and I. Seland. 2010. ‘Citizenship Policies and Ideas of Nationhood in
Scandinavia.’ Citizenship Studies 14(4):429–43.
Brubaker, W. R. 1990. ‘Immigration, Citizenship, and the Nation-State in France
and Germany: A Comparative Historical Analysis.’ International Sociology
5(4):379–407.
Burchell, D. 2002. ‘Ancient Citizenship and Its Inheritors.’ Pages 89–104 in
Handbook of Citizenship Studies, edited by E. F. Isin and B. S. Turner.
London: Sage.
Burns, N. 2019. ‘Boundary Maintenance: Exploring the Intersections of Disability
and Migration.’ Pages 305–320 in Routledge Handbook of Disability Studies, edited
by N. Watson and S. Vehmas. Abingdon: Routledge.
Caldwell, K., S. P. Harris, and M. Renko. 2012. ‘The Potential of Social
Entrepreneurship: Conceptual Tools for Applying Citizenship Theory to Policy
and Practice.’ Intellectual and Developmental Disabilities 50(6):505–18.
Caraus, T. 2018. ‘Migrant Protests as Acts of Cosmopolitan Citizenship Migrant
Protests as Acts of Cosmopolitan Citizenship.’ Citizenship Studies 22(8):791–809.
Carey, A. C. 2003. ‘Beyond the Medical Model: A Reconsideration of
‘Feeblemindedness’, Citizenship, and Eugenic Restrictions.’ Disability & Society
18(4):411–30.
Carey, A. C. 2009. On the Margins of Citizenship. Philadelphia, PA: Temple
University Press.
Chouinard, V. 2001. ‘Legal Peripheries: Struggles over Disabled Canadians’ Places in
Law, Society and Space.’ The Canadian Geographer/Le Géographe Canadien
45(1):187–92.
Christensen, K., I. Guldvik, and M. Larsson. 2014. ‘Active Social Citizenship: The
Case of Disabled Peoples’ Rights to Personal Assistance.’ Scandinavian Journal of
Disability Research 16(sup1):19–33.
Clifford, S. 2014. ‘The Capacity Contract: Locke, Disability, and the Political
Exclusion of “Idiots”.’ Politics, Groups and Identities 2(1):90–103.
Cohen, E. F. 2009. Semi-Citizenship in Democratic Politics. Cambridge: Cambridge
University Press.
Dagger, R. 2002. ‘Republican Citizenship.’ Pages 145–158 in Handbook of
Citizenship Studies, edited by E. I. Isin and B. Turner. London: Sage.
Darcy, S., H. Maxwell, and J. Green. 2016. ‘Disability Citizenship and Independence
through Mobile Technology? A Study Exploring Adoption and Use of a Mobile
Technology Platform.’ Disability & Society 31(4):497–519.
Das, V. and R. Addlakha. 2001. ‘Disability and Domestic Citizenship: Voice,
Gender, and the Making of the Subject.’ Public Culture 13(3):511–531.
Dauvergne, C. 2007. ‘Citizenship with a Vengeance.’ Theoretical Inquiries in Law
8(2):489–508.
Degener, T. 2016. ‘Disability in a Human Rights Context.’ Laws 5(3) Retrieved 18
March 2020 (https://doi.org/10.3390/laws5030035).
Delanty, G. 1997. ‘Models of Citizenship: Defining European Identity and
Citizenship.’ Citizenship Studies 1(3):285–303.
Dermaut, V., T. Schiettecat, S. Vandevelde, and G. Roets. 2019. ‘Citizenship,
Disability Rights and the Changing Relationship between Formal and Informal
Caregivers: It Takes Three to Tango.’ Disability and Society 35(2):280–302.
Desforges, L., R. Jones, and M. Woods. 2005. ‘New Geographies of Citizenship.’
Citizenship Studies 9(5):439–451.
Devlin, R. and D. Pothier. 2006. ‘Critical Disability Theory.’ Pages 1–22 in Critical
Disability Theory, edited by D. Pothier and R. Devlin. Vancouver: UBC Press.
Diener, A. 2017. ‘Re-Scaling the Geography of Citizenship.’ Pages 36–59 in The
Oxford Handbook of Citizenship, edited by A. Shachar, R. Bauböck, I. Bloemraad,
and M. Vink. Oxford: Oxford University Press.
Driedger, D. 1989. The Last Civil Rights Movement: Disabled Peoples’ International.
London: Hurst.
Dwyer, P. 1998. ‘Conditional Citizens? Welfare Rights and Responsibilities in the
Late 1990s.’ Critical Social Policy 18(4):493–517.
Edlund, J. and I. Johansson Sevä. 2013. ‘Is Sweden Being Torn Apart? Privatization
and Old and New Patterns of Welfare State Support.’ Social Policy and
Administration 47(5):542–564.
Ellison, N. 2000. ‘Proactive and Defensive Engagement: Social Citizenship in a
Changing Public Sphere.’ Sociological Research Online 5(3) Retrieved 18 March
2020 (www.socresonline.org.uk/5/3/ellison.html).
Emery, S. D. 2007. ‘Citizenship and Sign Bilingualism: “… There Is Nothing Wrong
with Being Bilingual … It’s a Positive and Fantastic Thing!”’ Deafness Education
International 9(4):173–186.
Emery, S. D. 2009. ‘In Space No One Can See You Waving Your Hands: Making
Citizenship Meaningful to Deaf Worlds.’ Citizenship Studies 13(1):31–44.
Erevelles, N. 2002. ‘(Im)material Citizens.’ Disability, Culture & Education 1(1):5–25.
Esping-Andersen, G. 1990. The Three Words of Welfare Capitalism. Cambridge:
Policy Press.
Flores, W. V. 2003. ‘New Citizens, New Rights: Undocumented Immigrants and
Latino Cultural Citizenship.’ Latin American Perspectives 30(2):87–100.
Frawley, P. and C. Bigby. 2011. ‘Inclusion in Political and Public Life: The Experiences
of People with Intellectual Disability on Government Disability Advisory Bodies in
Australia.’ Journal of Intellectual & Developmental Disability 36(1):27–38.
Gaete-Reyes, M. 2015. ‘Citizenship and the Embodied Practice of Wheelchair Use.’
Geoforum 64:351–361.
Gilbert, T., A. Cochrane, and S. Greenwell. 2005. ‘Citizenship: Locating People with
Learning Disabilities.’ International Journal of Social Welfare 14(4):287–296.
Glenn, E. 2000. ‘Citizenship and Inequality: Historical and Global Perspectives.’
Social Problems 47(1):1–20.
Glenn, E. N. 2011. ‘Constructing Citizenship.’ American Sociological Review
76(1):1–24.
Grover, C. and K. Soldatic. 2013. ‘Neoliberal Restructuring, Disabled People and
Social (in)Security in Australia and Britain.’ Scandinavian Journal of Disability
Research 15(3):216–232.
Guldvik, I. and J. J. H. Lesjø. 2014. ‘Disability, Social Groups, and Political
Citizenship.’ Disability & Society 29(4):1–14.
Halvorsen, R., B. Hvinden, J. Beadle-Brown, M. Biggeri, J. Tøssebro, and
A. Waldschmidt, eds. 2018. Understanding the Lived Experiences of Persons with
Disabilities in Nine Countries: Active Citizenship and Disability in Europe Volume 2.
Abingdon: Routledge.
Halvorsen, R., B. Hvinden, J. E. Bickenbach, D. Ferri, and A. M. Guillén
Rodriguez, eds. 2017. The Changing Disability Policy System: Active Citizenship
and Disability in Europe Volume 1. Abingdon: Routledge.
Hande, M. J. and C. Kelly. 2015. ‘Organizing Survival and Resistance in Austere
Times: Shifting Disability Activism and Care Politics in Ontario, Canada.’
Hansen, R. and J. Koehler. 2005. ‘Issue Definition, Political Discourse and the
Politics of Nationality Reform in France and Germany.’ European Journal of
Political Research 44(5):623–644.
Harwood, R. 2014. ‘“The Dying of the Light”: The Impact of the Spending Cuts,
and Cuts to Employment Law Protections, on Disability Adjustments in British
Local Authorities.’ Disability & Society 29(10):1511–1523.
Hästbacka, E. and M. Nygård. 2013. ‘Disability and Citizenship. Politicians’ Views
on Disabled Persons’ Citizenship in Finland.’ Scandinavian Journal of Disability
Research 15(2):125–142.
Hastings, J. and H. Thomas. 2005. ‘Accessing the Nation: Disability, Political
Inclusion and Built Form.’ Urban Studies 42(3):527–544.
Hirschmann, N. J. and B. Linker. 2015. ‘Disability, Citizenship, and Belonging: A
Critical Introduction.’ Pages 1–21 in Civil Disabilities: Citizenship, Membership
and Belonging, edited by N. J. Hirschmann and B. Linker. Philadelphia, PA:
University of Pennsylvania Press.
Holston, J. 2008. Insurgent Citizenship: Disjunctions of Democracy and Modernity in
Brazil. Princeton, NJ: Princeton University Press.
Holston, J. 2009. ‘Insurgent Citizenship in an Era of Global Peripheries.’ City and
Society 21(2):245–267.
Honohan, I. 2017. ‘Liberal and Republican Conceptions of Citizenship.’ Pages
83–106 in The Oxford Handbook of Citizenship, edited by A. Shachar, R. Bauböck,
I. Bloemraad, and M. Vink. Oxford: Oxford University Press.
Hough, R. E. 2012. ‘Adult Protection and “Intimate Citizenship” for People with
Learning Difficulties: Empowering and Protecting in Light of the No Secrets
Review.’ Disability & Society 27(1):131–144.
Hughes, B. 2015. ‘Disabled People as Counterfeit Citizens: The Politics of
Resentment Past and Present.’ Disability & Society 30(7):991–1004.
Hurst, R. 1995. ‘Choice and Empowerment – Lessons from Europe.’ Disability &
Society 10(4):529–534.
Ignagni, E., A. Fudge Schormans, K. Liddiard, and K. Runswick-Cole. 2016. ‘“Some
People Are Not Allowed to Love”: Intimate Citizenship in the Lives of People
Labelled with Intellectual Disabilities.’ Disability and Society 31(1):131–135.
Isin, E. F. 2008. ‘Theorising Acts of Citizenship.’ Pages 15–43 in Acts of Citizenship,
edited by E. F. Isin and G. M. Nielsen. London: Zed Books.
Isin, E. F. and B. S. Turner. 2002. ‘Citizenship Studies: An Introduction.’ Pages 1–10
in Handbook of Citizenship Studies. London: Sage.
Jayasooria, D. 1999. ‘Disabled People: Active or Passive Citizens – Reflections from
the Malaysian Experience.’ Disability & Society 14(3):341–352.
Jenkins, R. 1991. ‘Disability and Social Stratification.’ British Journal of Sociology
42(4):557–580.
Jones, E. and J. Gaventa. 2002. Concepts of Citizenship: A Review. Brighton:
Institute of Development Studies.
Joppke, C. 2007. ‘Transformation of Citizenship: Status, Rights, Identity.’
Keeley, H., M. Redley, A. J. Holland, and I. C. H. Clare. 2008. ‘Participation in the
2005 General Election by Adults with Intellectual Disabilities.’ Journal of
Intellectual Disability Research 52:175–181.
Kjellberg, A. 2002. ‘Being a Citizen.’ Disability & Society 17(2):187–203.
Kjellberg, A. and H. Hemmingsson. 2013. ‘Citizenship and Voting: Experiences of
Persons With Intellectual Disabilities in Sweden.’ Journal of Policy and Practice in
Intellectual Disabilities 10(4):326–333.
Kymlicka, W. 1995. Multicultural Citizenship: A Liberal Theory of Minority Rights.
Oxford: Clarendon Press.
Kymlicka, W. and W. Norman. 1994. ‘Return of the Citizen: A Survey of Recent
Work on Citizenship Theory.’ Ethics 104(2):352–381.
Lid, I. M. 2015. ‘Vulnerability and Disability: A Citizenship Perspective.’ Disability &
Society 30(10):1554–1567.
Liddiard, K. 2014. ‘ “I Never Felt like She Was Just Doing It for the Money”:
Disabled Men’s Intimate (Gendered) Realities of Purchasing Sexual Pleasure and
Intimacy.’ Sexualities 17(7):837–55.
Linklater, A. 2002. ‘Cosmopolitan Citizenship.’ Pages 317–332 in Handbook of
Citizenship Studies, edited by E. F. Isin and B. S. Turner. London: Sage.
Lister, R. 2002. ‘Sexual Citizenship.’ Pages 191–207 in Handbook of Citizenship
Studies, edited by I. F. Engin and B. S. Turner. London: Sage.
Lister, R. 2003. Citizenship Feminist Perspectives. 2nd ed. Basingstoke: Macmillan.
Lister, R., N. Smith, S. Middleton, and L. Cox. 2003. ‘Young People Talk about
Citizenship: Empirical Perspectives on Theoretical and Political Debates.’
Lyons, J. 1999. ‘Mentally Disabled Citizenship Applicants and the Meaningful Oath
Requirement for Naturalization.’ California Law Review 87 (4):1017–1048.
Malli, M. A., L. Sams, R. Forrester-Jones, G. Murphy, and M. Henwood. 2018.
‘Austerity and the Lives of People with Learning Disabilities. A Thematic
Synthesis of Current Literature.’ Disability and Society 33(9):1412–1435.
Marshall, T. H. 1992. ‘Citizenship and Social Class.’ Pages 3–51 in Citizenship and
Social Class, edited by T. H. Marshall and T. Bottomore. London: Pluto Press.
McCausland, D., P. McCallion, D. Brennan, and M. McCarron. 2018.
‘Interpersonal Relationships of Older Adults with an Intellectual Disability in
Ireland.’ Journal of Applied Research in Intellectual Disabilities 62(10):875–887.
Mckearney, P. 2017. ‘L’Arche, Learning Disability, and Domestic Citizenship:
Dependent Political Belonging in a Contemporary British City.’ City and Society
29(2):260–280.
McNevin, A. 2007. ‘Irregular Migrants, Neoliberal Geographies and Spatial
Frontiers of “the Political”.’ Review of International Studies 33:655–674.
Meekosha, H. 2002. ‘Virtual Activists? Women and the Making of Identities of
Disability.’ Hypatia 17(3):67–88.
Meekosha, H. and L. Dowse. 1997. ‘Enabling Citizenship: Gender, Disability and
Citizenship in Australia.’ Feminist Review 57:49–72.
Meekosha, H., R. Shuttleworth, and K. Soldatic. 2013. ‘Disability and Critical
Sociology: Expanding the Boundaries of Critical Social Inquiry.’ Critical
Sociology 39(3):319–323.
Menzies, R. 1998. ‘Governing Mentalities: The Deportation of “Insane” and
“Feebleminded” Immigrants out of British Columbia from Confederation to
World War II.’ Canadian Journal of Law and Society/Revue Canadienne Droit et
Societe 13(2):135–173.
Montesino, N. 2012. ‘Social Disability: Roma and Refugees in Swedish Welfare.’
International Journal of Migration, Health and Social Care 8(3):134–145.
Moon, S. 2012. ‘Local Meanings and Lived Experiences of Citizenship: Voices from
a Women’s Organization in South Korea.’ Citizenship Studies 16(1):49–67.
Morris, J. 2005. Citizenship and Disabled People: A Scoping Paper Prepared for the
Disability Rights Commission. London: Disability Rights Commission.
Morrow, M., O. Hankivsky, and C. Varcoe. 2004. ‘Women and Violence: The
Effects of Dismantling the Welfare State.’ Critical Social Policy 24(3):358–384.
Norberg, I. 2019. Life in the Hands of Welfare Bureaucracy: The Impact of Austerity
on Disabled People in Sweden. PhD thesis: University of Glasgow.
OHCHR. 2020. ‘Ratification of the Convention on the Rights of Persons with
Disabilities.’ Retrieved 18 March 2020 (www.ohchr.org/Documents/HRBodies/
CRPD/OHCHR_Map_CRPD.pdf).
Oliver, M. 1992. ‘Education for Citizenship: Issues for Further Education.’ Retrieved
3 April 2019 (https://disability-studies.leeds.ac.uk/wp-content/uploads/sites/40/
library/Oliver-walter-lessing.pdf).
Ong, A. 1999. Flexible Citizenship: The Cultural Logics of Transnationality. Durham,
NC: Duke University Press.
Papacharissi, Z. 2002. ‘The Virtual Sphere.’ New Media & Society 4(1):9–27.
Papacharissi, Z. 2010. A Private Sphere: Democracy in a Digital Age. Cambridge:
Polity Press.
Parreñas, R. S. 2001. ‘Transgressing the Nation-State: The Partial Citizenship and
‘Imagined (Global) Community’ of Migrant Filipina Domestic Workers.’ Signs
26(4):1129–1154.
Patrick, R. 2011. ‘Disabling or Enabling: The Extension of Work-Related
Conditionality to Disabled People.’ Social Policy & Society 10(3):309–320.
Patrick, R. 2017. ‘Wither Social Citizenship? Lived Experiences of Citizenship In/
Exclusion for Recipients of Out-of-Work Benefits.’ Social Policy and Society
16(2):293–304.
Pearson, C. and F. Trevisan. 2015. ‘Disability Activism in the New Media Ecology:
Campaigning Strategies in the Digital Era.’ Disability & Society 30(6):924–940.
Phillips, S. D. 2011. Disability and Mobile Citizenship in Postsocialist Ukraine.
Bloomington, IN: Indiana University Press.
Plummer, K. 2001. ‘The Square of Intimate Citizenship: Some Preliminary
Proposals.’ Citizenship Studies 5(3):237–253.
Priestley, M., M. Stickings, E. Loja, S. Grammenos, A. Lawson, L. Waddington,
and B. Fridriksdottir. 2016. ‘The Political Participation of Disabled People in
Europe: Rights, Accessibility and Activism.’ Electoral Studies 42:1–9.
Prince, M. J. 2001. ‘Canadian Federalism and Disability Policy Making.’ Canadian
Journal of Political Science 34(4):791–817.
Prince, M. J. 2009. Absent Citizens: Disability Politics and Policy in Canada.
Toronto: University of Toronto Press.
Rapp, R. and F. Ginsburg. 2001. ‘Enabling Disability: Rewriting Kinship,
Reimagining Citizenship.’ Public Culture 13(3):533–556.
Rauch, D., E. Olin, and A. Dunér. 2018. ‘A Refamilialized System? An Analysis of
Recent Developments of Personal Assistance in Sweden.’ Social Inclusion
6(2):56–65.
Redley, M. and D. Weinberg. 2007. ‘Learning Disability and the Limits of Liberal
Citizenship: Interactional Impediments to Political Empowerment.’ Sociology of
Health and Illness 29:767–786.
Rioux, M. and F. Valentine. 2006. ‘Does Theory Matter? Exploring the Nexus be
tween Disability, Human Rights and Public Policy.’ Pages 47–69 in Critical
Disability Theory – Essays in Philosophy, Politics, Policy and Law, edited by
D. Pothier and R. Devlin. Vancouver: UBC Press.
Rogers, C. 2009. ‘(S)excerpts from a Life Told: Sex, Gender and Learning
Disability.’ Sexualities 12(3):270–288.
Rowe, M. and J.-F. Pelletier. 2012. ‘Citizenship: A Response to the Marginalization
of People with Mental Illnesses.’ Journal of Forensic Psychology Practice
12(4):366–381.
Rummery, K. 2006. ‘Disabled Citizens and Social Exclusion: The Role of Direct
Payments.’ Policy and Politics 34(4):633–650.
Rummery, K. and C. Glendinning. 2000. ‘Access to Services as a Civil and Social
Rights Issue: The Role of Welfare Professionals in Regulating Access to and
Commissioning Services for Disabled and Older People under New Labour.’
Social Policy and Administration 34(5):529–550.
Rummery, K. and L. Jordan. 2004. ‘Disability, Citizenship and Community Care: A
Case for Welfare Rights?’ Social Policy and Administration 38:541–548.
Sabatello, M. and M. Schulze, eds. 2013. Human Rights & Disability Advocacy.
Philadelphia, PA: University of Pennsylvania Press.
Saffer, J., L. Nolte, and S. Duffy. 2018. ‘Living on a Knife Edge: The Responses of
People with Physical Health Conditions to Changes in Disability Benefits.’
Sanders, T. 2007. ‘The Politics of Sexual Citizenship: Commercial Sex and
Disability.’ Disability & Society 22(5):439–455.
Sassen, S. 2002. ‘The Repositioning of Citizenship: Emergent Subjects and Spaces
for Politics.’ Berkeley Journal of Sociology 46:4–26.
Schierup, C.-U. and A. Alund. 2011. ‘The End of Swedish Exceptionalism?
Citizenship, Neoliberalism and the Politics of Exclusion.’ Race & Class
53(1):45–64.
Schuck, P. H. 2002. ‘Liberal Citizenship.’ Pages 131–144 in Handbook of Citizenship
Studies, edited by E. F. Isin and B. S. Turner. London: Sage.
Schweik, S. 2011. ‘Disability and the Normal Body of the (Native) Citizen.’ Social
Research 78:417–442.
Scotch, R. K. 2001. From Good Will to Civil Rights: Transforming Federal Disability
Policy. 2nd ed. Philadelphia, PA: Temple University Press.
Sépulchre, M. 2017. ‘Research about Citizenship and Disability: A Scoping Review.’
Disability and Rehabilitation 39(10):949–956.
Sépulchre, M. 2018. ‘Tensions and Unity in the Struggle for Citizenship: Swedish
Disability Rights Activists Claim “Full Participation! Now!”’ Disability & Society
33(4):539–561.
Sépulchre, M. and L. Lindberg. 2020. ‘Swedish Disability Activism: From Welfare to
Human Rights?’ Pages 298–411 in The Routledge Handbook of Disability Activism,
edited by M. Berghs, T. Chataika, Y. El-Lahib, and A. K. Dub. New York:
Routledge.
Sépulchre, M. and R. Lindqvist. 2016. ‘Enhancing Active Citizenship for Persons
with Psychosocial Disabilities.’ Scandinavian Journal of Disability Research
18(4):316–327.
Sépulchre, M., V. Schuller, J. Kline, and A. M. Kittelsaa. 2018. ‘Gendering Active
Citizenship: Experiences of Women with Disabilities.’ Pages 156–173 in
Understanding the Lived Experiences of Persons with Disabilities in Nine Countries:
Active Citizenship and Disability in Europe Volume 2, edited by R. Halvorsen,
B. Hvinden, J. Beadle Brown, M. Biggeri, J. Tøssebro, and A. Waldschmidt.
London: Routledge.
Sevenhuijsen, S. 2000. ‘Caring in The Third Way: The Relation Between Obligation,
Responsibility and Care in Third Way Discourse.’ Critical Social Policy
20(1):5–37.
Shachar, A., R. Bauböck, I. Bloemraad, and M. Vink. 2017. ‘Introduction:
Citizenship – Quo Vadis?’ Pages 3–14 in The Oxford Handbook of Citizenship,
edited by A. Shachar, R. Baubök, I. Bloemraad, and M. Vink. Oxford: Oxford
University Press.
Shakespeare, T. and N. Watson. 2001. ‘Making the Difference. Disability, Politics and
Recognition.’ Pages 546–564 in Handbook of Disability Studies, edited by G. L.
Albrecht, K. D. Seelman, and M. Bury. Thousand Oaks, CA: Sage Publications.
Shapiro, J. P. 1993. No Pity: People with Disabilities Forging a New Civil Rights
Movement. New York: Three Rivers Press.
Shildrick, M. 2007. ‘Contested Pleasures: The Sociopolitical Economy of Disability
and Sexuality.’ Sexuality Research & Social Policy 4(1):53–66.
Shuttleworth, R. and H. Meekosha. 2012. ‘The Sociological Imaginary and
Disability Enquiry in Late Modernity.’ Critical Sociology 39(3):349–367.
Singleton, B. E. and G. Fry. 2015. ‘Citizen Carer: Carer’s Allowance and
Conceptualisations of UK Citizenship.’ Journal of Social Policy 44(3):549–566.
Skrentny, J. D. 2002. The Minority Rights Revolution. Cambridge, MA: The Belknap
Press of Harvard University Press.
Smith, R. M. 2002. ‘Modern Citizenship.’ Pages 105–116 in Handbook of Citizenship
Studies, edited by E. F. Isin and B. S. Turner. London: Sage.
Snyder, S. L. and D. T. Mitchell. 2010. ‘Introduction: Ablenationalism and the Geo-
Politics of Disability.’ Journal of Literary and Cultural Disability Studies 4(2):113–125.
Stevenson, N., ed. 2001. Culture & Citizenship. London: Sage Publications.
Straimer, C. 2011. ‘Between Protection and Assistance: Is There Refuge for Asylum
Seekers with Disabilities in Europe?’ Disability & Society 26(5):537–551.
Therborn, G. 2017. ‘The “People’s Home” Is Falling down, Time to Update Your
View of Sweden.’ Sociologisk Forskning 54(4):275–278.
Titchkosky, T. 2003. ‘Governing Embodiment: Technologies of Constituting
Citizens with Disabilities.’ The Canadian Journal of Sociology/Cahiers Canadiens
de Sociologie 28(4):517–542.
Tonkiss, K. and T. Bloom. 2015. ‘Theorising Noncitizenship: Concepts, Debates and
Challenges.’ Citizenship Studies 19(8):837–852.
Trevisan, F. 2014. ‘Scottish Disability Organizations and Online Media: A Path to
Empowerment or “Business as Usual”?’ Disability Studies Quarterly 34(3).
Retrieved 18 March 2020 (https://dsq-sds.org/article/view/3359/3648).
Trevisan, F. 2017. Disability Rights Advocacy Online – Voice, Empowerment and
Global Connectivity. New York: Routledge.
Trevisan, F. 2018. ‘Connective Action Mechanisms in a Time of Political Turmoil:
Virtual Disability Rights Protest at Donald Trump’s Inauguration.’ Australian
Journal of Political Science 53(1):103–115.
Turner, B. S. 1986. Citizenship and Capitalism: The Debate Over Reformism. London:
Allen & Unwin.
Turner, B. S. 1993. ‘Outline of a Theory of Human Rights.’ Sociology 27(3):489–512.
Turner, B. S. 1997. ‘Citizenship Studies: A General Theory.’ Citizenship Studies
1(1):5–18.
United Nations. 2018. ‘10th Anniversary of the Adoption of Convention on the
Rights of Persons with Disabilities (CRPD).’ Retrieved 17 November 2018 (www.
un.org/development/desa/disabilities/convention-on-the-rights-of-persons-with-
disabilities/the-10th-anniversary-of-the-adoption-of-convention-on-the-rights-of-
persons-with-disabilities-crpd-crpd-10.html).
Valentine, F. and J. Vickers. 1996. ‘Released from the Yoke of Paternalism and
“Charity”: Citizenship and the Right of Canadians with Disabilities.’ International
Journal of Canadian Studies 14:155–177.
van Houten, D. and G. Jacobs. 2005. ‘The Empowerment of Marginals: Strategic
Paradoxes.’ Disability & Society 20(6):641–654.
Vogel, U. 1991. ‘Is Citizenship Gender-Specific?’ Pages 58–85 in The Frontiers of
Citizenship, edited by U. Vogel and M. Moran. New York: St Martin’s Press.
Walby, S. 1994. ‘Is Citizenship Gendered?’ Sociology 28(2):379–395.
Waldschmidt, A. and M. Sépulchre. 2019. ‘Citizenship – Reflections on a Relevant
but Ambivalent Concept for Persons with Disabilities.’ Disability & Society 34(3):
421–448.
Walmsley, J. 1991. ‘“Talking to Top People”: Some Issues Relating to the
Citizenship of People with Learning Difficulties.’ Disability, Handicap & Society
6(3):219–231.
Watermeyer, B., J. Mckenzie, and L. Swartz. 2019. ‘Introduction.’ Pages 1–10 in The
Palgrave Handbook of Disability and Citizenship in the Global South, edited by
B. Watermeyer, J. Mckenzie, and L. Swartz. London: Palgrave Macmillan.
WHO. 2011. World Report on Disability. Geneva: The World Health Organization.
Wiseman, P. 2014. Reconciling the ‘Private’ and ‘Public’: Disabled Young People’s
Experiences of Everyday Embodied Citizenship. PhD thesis: University of Glasgow.
Yardimci, S. and D. Bezmez. 2018. ‘Disabled Istanbulites’ Everyday Life
Experiences as “Urban Citizens”: Accessibility and Participation in Decision-
Making.’ Citizenship Studies 22(5):475–490.
Yuval-Davis, N. 2011. The Politics of Belonging: Intersectional Contestations.
London: Sage Publications.
Altermark, N. 2017a. ‘Hur Legitimeras Socialpolitiska Besparingar ? [How Are
Social Political Savings Legitimated?].’ Socialvetenskaplig Tidskrift 2:107–26.
Altermark, N. 2017b. ‘The Post-Institutional Era: Visions of History in Research on
Intellectual Disability.’ Disability & Society 32(9):1315–32.
Arneil, B. 2009. ‘Disability, Self Image, and Modern Political Theory.’ Political
Theory 37(2):218–42.
Bagenstos, S. R. 2017. ‘Disability, Universalism, Social Rights, and Citizenship.’
Cardozo Law Review 39(2):413–38.
Barbalet, J. M. 1988. Citizenship: Rights, Struggles and Class Inequality. Milton
Keynes: Open University Press.
Berger, P. and T. Luckmann. 1967. The Social Construction of Reality: A Treatise in
the Sociology of Knowledge. London: Anchor Books.
Policy for Persons with Disabilities.’ European Journal of Social Work. Retrieved
Bergval, I. P. and M. Sjöberg. 2012. Åratal – Ur Handikapphistorien [Dates – from
the History of Disability]. 4th ed. Stockholm: HandikappHistoriska Föreningen.
Berlin, I. 2002. ‘No Two Concepts of Liberty.’ in Liberty, edited by H. Hardy. Oxford:
Oxford Scholarship Online. Retrieved 18 March 2020 (www.oxfordscholarship.com/
view/10.1093/019924989X.001.0001/acprof-9780199249893).
Bosniak, L. 2006. The Citizen and the Alien: Dilemmas of Contemporary Membership.
Princeton, NJ: Princeton University Press.
the Rights of Persons with Disabilities?’ Laws 5(2). Retrieved 18 March 2020
Broberg, G. and N. Roll-Hansen. 2005. Eugenics and the Welfare State: Norway,
Sweden, Denmark and Finland. East Lansing, MI: Michigan State University Press.
Bussemaker, J. and R. Voet. 1998. ‘Citizenship and Gender: Theoretical Approaches
and Historical Legacies.’ Critical Social Policy 18(3):277–307.
Caldwell, K., S. P. Harris, and M. Renko. 2012. ‘The Potential of Social
Entrepreneurship: Conceptual Tools for Applying Citizenship Theory to Policy
and Practice.’ Intellectual and Developmental Disabilities 50(6):505–18.
Carey, A. C. 2003. ‘Beyond the Medical Model: A Reconsideration of
“Feeblemindedness”, Citizenship, and Eugenic Restrictions.’ Disability & Society
18(4):411–30.
Carey, A. C. 2009. On the Margins of Citizenship. Philadelphia: Temple University Press.
Chouinard, V. 2001. ‘Legal Peripheries: Struggles over Disabled Canadians’ Places in
Law, Society and Space.’ The Canadian Geographer/Le Géographe Canadien
45(1):187–92.
Cohen, E. F. 2005. ‘Neither Seen nor Heard: Children’s Citizenship in
Contemporary Democracies.’ Citizenship Studies 9(2):221–40.
University Press.
Cohen, E. F. 2018. The Political Value of Time: Citizenship, Duration, and
Democratic Justice. Cambridge: Cambridge University Press.
Crompton, R. 1998. Class and Stratification. 2nd ed. Cambridge: Polity Press.
Crotty, M. 1998. The Foundations of Social Research. London: Sage.
Dahrendorf, R. 1974. ‘Citizenship and Beyond: The Social Dynamics of an Idea.’
Social Research 41(4):673–701.
Donaldson, S. and W. Kymlicka. 2017. ‘Inclusive Citizenship Beyond the Capacity
Contract.’ Pages 838–860 in The Oxford Handbook of Citizenship, edited by A. Shachar,
R. Bauböck, I. Bloemraad, and M. Vink. Oxford: Oxford University Press.
Duffy, S. 2012. ‘The Limits of Personalisation.’ Tizard Learning Disability Review
17(3):111–123.
Changing Public Sphere.’ Sociological Research Online 5(3) Retrieved 18 March
2020 (www.socresonline.org.uk/5/3/ellison.html).
Eurostat. 2020a. ‘Social Benefits by Function – % of Total Benefits.’ Retrieved
23 January 2020 (https://ec.europa.eu/eurostat/tgm/refreshTableAction.do?tab=
table&plugin=1&pcode=tps00106&language=en).
Eurostat. 2020b. ‘Total Expenditure on Social Protection per Head of Population.’
Retrieved 23 January 2020 (https://ec.europa.eu/eurostat/tgm/table.do?tab=table&
init=1&language=en&pcode=tps00099&plugin=1).
Fraser, N. 1995. ‘From Redistribution to Recognition ? Dilemmas of Justice in a
“Post-Socialist” Age.’ New Left Review 1(212):68–93.
Fraser, N. 2003. ‘Social Justice in the Age of Identity Politics: Redistribution,
Recognition, and Participation.’ Pages 7–109 in Redistribution or Recognition? A
Political-Philosophical Exchange, edited by N. Fraser and A. Honneth. London: Verso.
Fraser, N. and L. Gordon. 1994. ‘Civil Citizenship against Social Citizenship?’ Pages
90–107 in The Condition of Citizenship, edited by B. van Steenbergen.
London: Sage.
Gaete-Reyes, M. 2015. ‘Citizenship and the Embodied Practice of Wheelchair Use.’
Geoforum 64:351–361.
Gerbaudo, P. 2017. ‘The Indignant Citizen: Anti-Austerity Movements in Southern
Europe and the Anti-Oligarchic Reclaiming of Citizenship.’ Social Movement
Studies 16(1):36–50.
Giddens, A. 1982. ‘Class Divisions, Class Conflict and Citizenship Rights.’ Pages
164–180 in Profiles and Critiques in Social Theory, edited by A. Giddens.
Basingstoke: Macmillan.
Government of Sweden [Regeringen]. 1980. Regeringens Proposition 1980/81:100 Med
Förslag till Statsbudget För Budgetåret 1981/82 [Proposition of the Government of
Sweden 1980/81:100 with Suggestions for the Budget Year 1981/82]. Stockholm.
Government of Sweden [Regeringen]. 2000. Regeringens Proposition 1999/2000:79
Från Patient till Medborgare – En Nationell Handlingsplan För Handikappolitiken
[Proposition of the Government of Sweden 1999/2000:79 From Patient to Citizen – a
National Plan of Action for Disability Politics]. Stockholm.
Government of Sweden [Regeringen]. 2015. Regleringsbrev för budgetåret 2016 av
seende Försäkringskassan [Instruction letter for the budget year 2016 regarding the
Swedish Social Insurance Agency]. Stockholm.
Nationellt Mål Och Inriktning För Funktionshinderspolitiken [Proposition of the
Government of Sweden 2016/17:188 National Goal and Direction for Disability
Politics]. Stockholm.
Government Offices of Sweden [Regeringskansliet]. 2011. En Strategi För
Genomförande Av Funktionshinderspolitiken 2011–2016 [a Strategy for the
Realisation of Disability Politics 2011–2016]. Stockholm.
Halvorsen, R., B. Hvinden, J. Beadle-Brown, M. Biggeri, J. Tøssebro, and A.
Waldschmidt, eds. 2018. Understanding the Lived Experiences of Persons with
Disabilities in Nine Countries: Active Citizenship and Disability in Europe Volume 2.
Hirschmann, N. J. 2016. ‘Disability Rights, Social Rights, and Freedom.’ Journal of
International Political Theory 12(1):42–57.
Isin, E. F. and B. S. Turner. 2007. ‘Investigating Citizenship: An Agenda for
Citizenship Studies.’ Citizenship Studies 11(1):5–17.
Joppke, C. 2007. ‘Transformation of Citizenship: Status, Rights, Identity.’
Lantto, P. and U. Mörkenstam. 2008. ‘Sami Rights and Sami Challenges: The
Modernization Process and the Swedish Sami Movement, 1886–2006.’
Scandinavian Journal of History 33(1):26–51.
Lewin, B. 1998. Funktionshinder och Medborgarskap [Disability and Citizenship].
Uppsala: Department of Public Health and Caring Sciences.
Lindqvist, R. 2000. ‘Swedish Disability Policy: From Universal Welfare to Civil
Rights.’ European Journal of Social Security 2/4:399–418.
Lister, R. 1998. ‘Citizenship and Difference Towards a Differentiated Universalism.’
European Journal of Social Theory 1(1):71–90.
Lister, R. 2003. Citizenship Feminist Perspectives. 2nd ed. Basingstoke: Macmillan.
Lister, R. 2007. ‘Inclusive Citizenship: Realizing the Potential.’ Citizenship Studies
11(1):49–61.
Mann, M. 1987. ‘Ruling Class Strategies and Citizenship.’ Sociology 21(3):339–354.
Marx, K. 2008. ‘On The Jewish Question.’ Retrieved 18 March 2020 (www.marxists.
org/archive/marx/works/1844/jewish-question/).
Ministry of Health and Social Affairs [Regeringskansliet]. 2011. Sweden’s Initial Report
under the Convention on the Rights of Persons with Disabilities. Retrieved 18 March
2020 (www.regeringen.se/49bbec/contentassets/2cb458dc109d4b85be427b0972a8f35e/
swedens-initial-report-under-the-convention-on-the-rights-of-persons-with-
disabilities).
Minow, M. 1985. ‘Learning to Live with the Dilemma of Difference: Bilingual and
Special Education.’ Law and Contemporary Problems 48(2):157–211.
Moon, S. 2012. ‘Local Meanings and Lived Experiences of Citizenship: Voices from
a Women’s Organization in South Korea.’ Citizenship Studies 16(1):49–67.
Myndigheten för Delaktighet [the Swedish Agency for Participation]. 2019a.
Redovisning Av Vidtagna Åtgärder 2014–2018 [Reporting of Measures Taken
2014–2018]. Sundbyberg.
Myndigheten för Delaktighet [the Swedish Agency for Participation]. 2019b.
Uppföljning Av Funktionshinderspolitiken 2018 [Monitoring of Disability Politics
2018]. Sundbyberg.
O’Brien, M. and T. Salonen. 2011. ‘Child Poverty and Child Rights Meet Active
Citizenship: A New Zealand and Sweden Case Study.’ Childhood 18(2):
211–226.
Panican, A. and R. Ulmestig. 2016. ‘Social Rights in the Shadow of Poor Relief –
Social Assistance in the Universal Swedish Welfare State.’ Citizenship Studies
20(3–4):475–89.
Parreñas, R. S. 2001. ‘Transgressing the Nation-State: The Partial Citizenship and
“Imagined (Global) Community” of Migrant Filipina Domestic Workers.’ Signs
26(4):1129–154.
Parry, G. 1991. ‘Conclusion: Paths to Citizenship.’ Pages 166–201 in The Frontiers of
Citizenship, edited by U. Vogel and M. Moran. New York: St Martin’s Press.
Pateman, C. 1989. The Disorder of Women. Cambridge: Polity Press in association
with Basil Blackwell.
Rioux, M. and F. Valentine. 2006. ‘Does Theory Matter? Exploring the Nexus be
tween Disability, Human Rights and Public Policy.’ Pages 47–69 in Critical
Disability Theory – Essays in Philosophy, Politics, Policy and Law, edited by
D. Pothier and R. Devlin. Vancouver: UBC Press.
SCB [Statistics Sweden]. 2019. ‘Situationen På Arbetsmarknaden För Personer Med
Funktionsnedsättning 2018 [the Labour Market Situation for Persons with
Disabilities 2018].’ Retrieved 18 March 2020 (www.scb.se/contentassets/
14e6562ea76147f3a18e06419fd0466f/am0503_2018a01_br_am78br1902.pdf).
SCB [Statistics Sweden]. 2020. ‘Summary of Population Statistics 1960–2019.’
Retrieved 19 March 2020 (www.scb.se/en/finding-statistics/statistics-by-subject-
area/population/population-composition/population-statistics/pong/tables-and-
graphs/yearly-statistics--the-whole-country/summary-of-population-statistics/).
Shachar, A., R. Bauböck, I. Bloemraad, and M. Vink. 2017. ‘Introduction:
Citizenship – Quo Vadis?’ Pages 3–14 in The Oxford Handbook of Citizenship,
edited by A. Shachar, R. Baubök, I. Bloemraad, and M. Vink. Oxford: Oxford
University Press.
Shapiro, I. 2012. ‘On Non-Domination.’ University of Toronto Law Journal
62:293–335.
Shapiro, I. 2016. Politics against Domination. Cambridge, MA: The Belknap Press of
Harvard University Press.
Socialdepartementet [Social Department of Sweden]. 1982. Handlingsprogram i
Handikappfrågor [Programme of Action in Disability Questions] SOU 1982:46.
Stockholm.
Swedish National Board of Health and Welfare [Socialstyrelsen]. 2010. Alltjämt
Ojämlikt! Levnadsförhållanden För Vissa Personer Med Funktionsnedsättning
[Still Unequal! The Living Conditions of Certain Persons with Impairment].
Stockholm.
Swedish Social Insurance Agency [Försäkringskassan]. 2017. ‘Assistansersättningens
Utveckling [The Development of the Assistance Allowance].’ Retrieved 22 January
2020 (www.forsakringskassan.se/wps/wcm/connect/d603e099-7176-4471-898f-
33c55a4ccd39/socialforsakringsrapport-2017-04.pdf?MOD=AJPERES&CVID=).
Swedish Social Insurance Agency [Försäkringskassan]. 2020. ‘Statistik Om
Assistansersättning [Statistics about the Assistance Allowance].’ Retrieved 22
January 2020 (www.forsakringskassan.se/statistik/funktionsnedsattning/
assistansersattning).
Turner, B. S. 1990. ‘Outline of a Theory of Citizenship.’ Sociology 24(2):189–217.
Turner, B. S. 1993. ‘Outline of a Theory of Human Rights.’ Sociology 27(3):489–512.
Turner, B. S. 1997. ‘Citizenship Studies: A General Theory.’ Citizenship Studies
1(1):5–18.
Turner, B. S. 2009. ‘Thinking Citizenship Series: T. H. Marshall, Social Rights and
English National Identity.’ Citizenship Studies 13(1):65–73.
UN Committee on the Rights of Persons with Disabilities. 2014. ‘Concluding
Observations on the Initial Report of Sweden.’ Retrieved 6 February 2020 (www.
regeringen.se/globalassets/regeringen/dokument/socialdepartementet/funktion
shinder/concluding-observations-on-the-initial-report-of-sweden.pdf).
Vogel, U. 1991. ‘Is Citizenship Gender-Specific?’ Pages 58–85 in The Frontiers of
Citizenship, edited by U. Vogel and M. Moran. New York: St. Martin’s Press.
Vogel, U. 1994. ‘Marriage and the Boundaries of Citizenship.’ Pages 76–89 in The
Condition of Citizenship, edited by B. van Steenbergen. London: Sage.
Walby, S. 1994. ‘Is Citizenship Gendered?’ Sociology 28(2):379–395.
Wiseman, P. 2014. Reconciling the ‘private’ and ‘Public’: Disabled Young People’s
Experiences of Everyday Embodied Citizenship. PhD thesis: University of Glasgow.
Young, I. M. 1989. ‘Polity and Group Difference: A Critique of the Ideal of
Universal Citizenship.’ Ethics 99(2):250–74.
Aldersey, H. M. 2013. ‘Disability Advocacy in Kinshasa, Democratic Republic of
the Congo.’ Disability & Society 28(6):784–97.
Anspach, R. R. 1979. ‘From Stigma to Identity Politics: Political Activism among
the Physically Disabled and Former Mental Patients.’ Social Science & Medicine
13:765–73.
Anthias, F. 1998. ‘Rethinking Social Divisions: Some Notes towards a Theoretical
Framework.’ Sociological Review 46(3):505–35.
Anthias, F. 2001a. ‘The Concept of “Social Division” and Theorising Social
Stratification: Looking at Ethnicity and Class.’ Sociology: the Journal of the British
Sociological Association 35(4):835–54.
Anthias, F. 2001b. ‘The Material and the Symbolic in Theorizing Social Stratification:
Issues of Gender, Ethnicity and Class.’ The British Journal of Sociology 52(3):367–90.
Anti-Handikapp. 1970. ‘AH Kontra Den Etablerade Handikapp-Rörelsen [Anti-
Handicap against the Established Disability Movement].’ AH-Bulletinen 1:7–7.
Barnes, C. and G. Mercer. 2010. Exploring Disability – a Sociological Introduction.
2nd ed. Cambridge: Polity Press.
Barton, L. 1993. ‘The Struggle for Citizenship: The Case of Disabled People.’
Disability, Handicap & Society 8(3):235–48.
Bartoszko, A., P. K. Solvang, and H. Hanisch. 2012. ‘ “It Did Not Come with Hitler
and Did Not Die with Hitler”: The Uses of the Holocaust by Disability Activists in
Norway.’ Society, Health & Vulnerability 3(1). Retrieved 18 March 2020 (www.
tandfonline.com/doi/full/10.3402/vgi.v3i0.17177).
Baylies, C. 2002. ‘Disability and the Notion of Human Development: Questions of
Rights and Capabilities.’ Disability and Society 17(7):725–39.
Baynton, D. 2001. ‘Disability and the Justification of Inequality in American
History.’ Pages 33–57 in The New Disability History, edited by P. K. Longmore
and L. Umansky. New York: New York University Press.
Baynton, D. 2005. ‘Slaves, Immigrants, and Suffragists: The Uses of Disability in
Citizenship Debates.’ Modern Language Association 120(2):562–67.
Beckett, A. 2005. ‘Reconsidering Citizenship in the Light of the Concerns of the UK
Disability Movement.’ Citizenship Studies 9(4):405–21.
Beckett, A. 2006a. Citizenship and Vulnerability: Disability and Issues of Social and
Beckett, A. 2006b. ‘Understanding Social Movements: Theorising the Disability
Movement in Conditions of Late Modernity.’ The Sociological Review 54(4):734–52.
Berg, S. 2005. ‘Personal Assistance Reforms in Sweden: Breaking the Assumption of
Dependency?’ Pages 32–48 in The Social Model of Disability: Europe and the
Majority World, edited by C. Barnes and G. Mercer. Leeds: The Disability Press.
Berg, S. 2007. DHR 80 År Av Rörelse [DRH 80 Years of Movement]. Stockholm: De
Handikappades Riksförbund.
Berg, S. 2008. 25 År Independent Living i Sverige [25 Years Independent Living in
Sweden]. Stockholm: STIL.
Bergval, I. P. and M. Sjöberg. 2012. Åratal – Ur Handikapphistorien [Dates – from
the History of Disability]. 4th ed. Stockholm: HandikappHistoriska Föreningen.
Bezmez, D. and S. Yardimci. 2010. ‘In Search of Disability Rights: Citizenship and
Turkish Disability Organizations.’ Disability & Society 25(5):603–15.
Bickenbach, J. E., S. Chatterji, E. M. Badley, and T. B. Üstün. 1999. ‘Models of
Disablement, Universalism and the International Classification of Impairments,
Disabilities and Handicaps.’ Social Sciences and Medicine 48:1173–87.
Bonfils, I. S. 2011. ‘Disability Meta-Organizations and Policy-Making under New Forms
of Governance.’ Scandinavian Journal of Disability Research 13(1):37–51.
Bottero, W. 2004. Stratification: Social Division and Inequality. London: Routledge.
Bottero, W. and S. Irwin. 2003. ‘Locating Difference: Class, “Race” and Gender,
and the Shaping of Social Inequalities.’ Sociological Review 51(4):463–83.
Braddock, D. L. and S. L. Parish. 2001. ‘An Institutional History of Disability.’
Pages 11–68 in Handbook of Disability Studies, edited by G. L. Albrecht, K. D.
Seelman, and M. Bury. Thousand Oaks, CA: Sage Publications.
Brennan, C., R. Traustadóttir, J. Rice, and P. Anderberg. 2018. ‘ “Being Number
Callus, A. M. 2014. ‘From “for” to “of”: A Typology of Maltese Disability
Organisations.’ Disability and Society 29(1):1–15.
Campbell, J. and M. Oliver. 1996. Disabilty Politics: Understanding Our Past,
Changing Our Future. London: Routledge.
Carey, A. C. 2009. On the Margins of Citizenship. Philadelphia, PA: Temple
University Press.
Carling-Jenkins, R. 2014. Disability and Social Movements: Learning from Australian
Experience. Farnham: Ashgate Publishing.
Charlton, J. I. 2000. Nothing about Us without Us: Disability Oppression and
Empowerment. Berkeley, CA: University of California Press.
Chatzitheochari, S. and L. Platt. 2019. ‘Disability Differentials in Educational
Attainment in England: Primary and Secondary Effects.’ British Journal of
Sociology 70(2):502–25.
Clark, T. N. and S. M. Lipset. 1991. ‘Are Social Classes Dying?’ International
Sociology 6(4):397–410.
Coleman-Fountain, E., R. Sainsbury, B. Trezzini, and S. Kanova. 2018. ‘Diversity and
Change in the Labour Market Careers of Persons with Disabilities.’ Pages 66–82 in
B. Hvinden, J. Beadle-Brown, M. Biggeri, J. Tossebro, and A. Waldschmidt.
Cooper, M. 1999. ‘The Australian Disability Rights Movement Lives.’ Disability &
Society 14(2):217–26.
Crompton, R. 1998. Class and Stratification. 2nd ed. Cambridge: Polity Press.
Crompton, R. 2008. Class and Stratification. 3rd ed. Cambridge: Polity Press.
Danermark, B. 2002. ‘Interdisciplinary Research and Critical Realism. The Example
of Disability Research.’ Alethia 5(1):56–64.
Davis, L. J. 1995. Enforcing Normalcy: Disability, Deafness and the Body. London:
Verso.
Degener, T. 2016. ‘Disability in a Human Rights Context.’ Laws 5(35). Retrieved
18 March 2020 (https://doi.org/10.3390/laws5030035).
Degener, T. 2017. ‘A Human Rights Model of Disability.’ Pages 31–50 in Routledge
Handbook of Disability Law and Human Rights, edited by B. Peter and E. Flynn.
New York: Routledge.
Dodd, S. 2016. ‘Orientating Disability Studies to Disablist Austerity: Applying
Fraser’s Insights.’ Disability and Society 31(2):149–65.
DPI. 2020. ‘Disabled Peoples’ International.’ Retrieved 6 March 2020 (www.
disabledpeoplesinternational.org).
London: Hurst.
Ekensteen, V. 1968. På Folkhemmets Bakgård [On the People’s Home’s Backyard].
Halmstad: Hallandspostens Boktrykeri.
Fawcett, B. 2000. Feminist Perspectives on Disability. Harlow: Prentice Hall.
Feely, M. 2016. ‘Disability Studies after the Ontological Turn: A Return to the
Material World and Material Bodies without a Return to Essentialism.’ Disability
and Society 31(7):863–83.
Fleischer, D. Z. and F. Zames. 2014. The Disability Rights Movement: From Charity
to Confrontation. Philadelphia, PA: Temple University Press.
Fontes, F. 2014. ‘The Portuguese Disabled People’s Movement: Development,
Demands and Outcomes.’ Disability & Society 29(9):1398–1411.
Fraser, N. 2000. ‘Rethinking Recognition.’ New Left Review 3:107–20.
Fraser, N. 2003. ‘Social Justice in the Age of Identity Politics: Redistribution,
Recognition, and Participation.’ Pages 7–109 in Redistribution or recognition? A
political-philosophical exchange, edited by N. Fraser and A. Honneth. London:
Verso.
French, S. 1993. ‘Disability, Impairment or Something in Between?’ Pages 17–25 in
Disabling Barriers – Enabling Environments, edited by J. Swain, V. Finkelstein,
S. French, and M. Oliver. London: Sage.
French, S. and J. Swain. 1997. ‘Changing Disability Research: Participating and
Emancipatory Research with Disabled People.’ Physiotherapy 83:26–32.
FUB. 2020. ‘Vad är FUB? [What Is FUB?].’ Retrieved 6 March 2020 (www.fub.se/
om-fub/historik/).
Garland Thomson, R. 1997. Extraordinary Bodies: Figuring Physical Disability in
American Culture and Literature. New York: Columbia University Press.
Goffman, E. 1963. Stigma. London: Penguin Books.
Goodley, D. 2013. ‘Dis/entangling Critical Disability Studies.’ Disability & Society
28(5):631–44.
Goodley, D. 2014. Dis/ability Studies: Theorising Disablism and Ableism. Abingdon:
Routledge.
Greve, B. 2009. ‘The Labour Market Situation of Disabled People in European
Countries and Implementation of Employment Policies: A Summary of
Evidence from Country Reports and Research Studies.’ Retrieved 6 March
2020 (www.disability-europe.net/downloads/276-aned-task-6-final-report-final-
version-17-04-09).
Grunewald, K. 2008. Från Idiot till Medborgare [From Idiot to Citizen]. Stockholm:
Gothia.
Hahn, H. 1996. ‘Antidiscrimination Laws and Social Research on Disability: The
Minority Group Perspective.’ Behavioral Sciences and the Law 14(1):41–59.
Hallerfors, H. 2003. ‘Normaliseringsprincipen [the Normalization Principle].’
Intra. Retrieved 6 March 2020 (www.tidskriftenintra.se/resources/arkiv/ideologi/
303normalisering.htm).
Harloe, M. 1995. The People’s Home?: Social Rented Housing in Europe and America.
Oxford: Blackwell.
Hayashi, R. and M. Okuhira. 2001. ‘The Disability Rights Movement in Japan: Past,
Present and Future.’ Disability & Society 16(6):855–69.
HCK. 1972. Ett Samhälle För Alla [A Society for Everyone]. Stockholm:
Handikappsförbundens Centralkommitté [Central Committee of the Disability
Federation].
Hirschmann, N. J. and B. Linker. 2015. ‘Disability, Citizenship, and Belonging: A
Critical Introduction.’ Pages 1–21 in Civil Disabilities: Citizenship, Membership
and Belonging, edited by N. J. Hirschmann and B. Linker. Philadelphia, PA:
University of Pennsylvania Press.
Hugemark, A. and C. Roman. 2007. ‘Diversity and Divisions in the Swedish
Disability Movement: Disability, Gender, and Social Justice.’ Scandinavian
Journal of Disability Research 9(1):26–45.
Hugemark, A. and C. Roman. 2012. Kamper i Handikapprörelsen [Struggles in the
Disability Movement]. Umeå: Boréa.
Hughes, B. 2009. ‘Disability Activisms: Social Model Stalwarts and Biological
Citizens.’ Disability & Society 24(6):677–88.
Hughes, B. 2020. A Historical Sociology of Disability: Human Validity and Invalidity
from Antiquity to Early Modernity. Abingdon: Routledge.
Hughes, B. and K. Paterson. 1997. ‘The Social Model of Disability and the Disappearing
Body: Towards a Sociology of Impairment.’ Disability & Society 12(3):325–40.
Hurst, R. 2005. ‘Disabled Peoples’ International: Europe and the Social Model of
Disability.’ Pages 65–79 in The Social Model of Disability: Europe and the Majority
World. Leeds: The Disability Press.
Hwang, S. K. and D. C. You. 2018. ‘Achievements of and Challenges Facing the
Korean Disabled People’s Movement Achievements of and Challenges Facing the
Korean.’ Disability & Society 33(8):1259–79.
Jayasooria, D. 1999. ‘Disabled People: Active or Passive Citizens – Reflections from
the Malaysian Experience.’ Disability & Society 14(3):341–52.
Jenkins, R. 1991. ‘Disability and Social Stratification.’ British Journal of Sociology
42(4):557–80.
Karačic, A., A. Sturm, A. Waldschmidt, and T. Dins. 2018. ‘Identity and Political
Participation throughout the Life Course.’ Pages 83–101 in Understanding the
Lived Experiences of Persons with Disabilities in Nine Countries: Active Citizenship
and Disability in Europe Volume 2, edited by R. Halvorsen, B. Hvinden, J. Beadle-
Brown, M. Biggeri, J. Tossebro, and A. Waldschmidt. Abingdon: Routledge.
Keith, L. 1992. ‘Who Cares Wins? Women, Caring and Disability.’ Disability,
Handicap & Society 7(2):167–75.
Kim, K. M. 2010. ‘The Accomplishments of Disabled Women’s Advocacy
Organizations and Their Future in Korea.’ Disability & Society 25(2):219–30.
Lappalainen, P. 2019. Country Report Non-Discrimination Sweden. Brussels:
European Commission Directorate-General for Justice and Consumers.
Lindberg, L. 2011. ‘Organisering Och Mobilisering [Organisation and Mobilisation].’
Pages 101–22 in Funktionshinderspolitik – en introduktion [Disability politics – an
introduction], edited by L. Lindberg and L. Grönvik. Lund: Studentlitteratur.
Lindqvist, R. 2000. ‘Swedish Disability Policy: From Universal Welfare to Civil
Rights.’ European Journal of Social Security 2/4:399–418.
Löve, L., R. Traustadóttir, G. Quinn, and J. Rice. 2017. ‘The Inclusion of the Lived
Experience of Disability in Policymaking.’ Laws 6(4). Retrieved 18 March 2020
Löve, L., R. Traustadóttir, and J. G. Rice. 2018. ‘Achieving Disability Equality:
Empowering Disabled People to Take the Lead.’ Social Inclusion 6(1):1–8.
Martinsson, A. 2016. ‘Så Minns Funktionshinderrörelsen Bengt Lindqvist [This Is How
the Disabilty Movement Remembers Bengt Lindqvist].’ Retrieved 6 March 2020
(www.funktionshinderpolitik.se/sa-minns-funktionshinderrorelsen-bengt-lindqvist/).
McCall, L. 2005. ‘The Complexity of Intersectionality.’ Signs 30(3):1771–1800.
McRuer, R. 2006. Crip Theory: Cultural Signs of Queerness and Disability. New
York: New York University Press.
Meekosha, H. 2002. ‘Virtual Activists? Women and the Making of Identities of
Disability.’ Hypatia 17(3):67–88.
Meekosha, H. 2006. ‘What the Hell Are You? An Intercategorical Analysis of Race,
Ethnicity, Gender and Disability in the Australian Body Politic.’ Scandinavian
Journal of Disability Research 8(2–3):161–76.
Meekosha, H. and R. Shuttleworth. 2009. ‘What’s so “Critical” about Critical
Disability Studies?’ Australian Journal of Human Rights 15(1):47–76.
Michailakis, D. 1997. ‘When Opportunity Is the Thing to Be Equalised.’ Disability
and Society 12(1):17–30.
Micheletti, M. 1995. Civil Society and State Relations in Sweden. Aldershot: Avebury.
Mik-Meyer, N. 2016. ‘Othering, Ableism and Disability: A Discursive Analysis of
Co-Workers’ Construction of Colleagues with Visible Impairments.’ Human
Relations 69(6):1341–63.
Mitra, S. 2006. ‘The Capability Approach and Disability.’ Journal of Disability
Policy Studies 16(4):236–47.
Mladenov, T. 2009. ‘Institutional Woes of Participation: Bulgarian Disabled
People’s Organisations and Policy-making.’ Disability & Society 24(1):33–45.
Morris, J. 1992. ‘Personal and Political: A Feminist Perspective on Researching
Physical Disability.’ Disability, Handicap & Society 7(2):157–66.
Morris, J. 2001. ‘Impairment and Disability: Constructing an Ethics of Care That
Promotes Human Rights.’ Hypatia 16(4):1–16.
Newell, C. 1996. ‘The Disability Rights Movement in Australia: A Note from the
Trenches.’ Disability & Society 11(3):429–32.
Nirje, B. 1994. ‘The Normalization Principle and Its Human Management
Implications.’ The International Social Role Valorization Journal 1(2):19–23. (First
Published in 1969).
Oliver, M. 1984. ‘The Politics of Disability.’ Critical Social Policy 4(11):21–32.
Oliver, M. 1990. The Politics of Disablement. Basingstoke: Macmillan.
Oliver, M. 1997. ‘The Disability Movement Is a New Social Movement!’ Community
Development Journal 32(3):244–251.
Oliver, M. 2013. ‘The Social Model of Disability: Thirty Years On.’ Disability &
Society 28(7):1024–26.
Oliver, M. and C. Barnes. 2012. The New Politics of Disablement. Basingstoke: Macmillan.
Payne, G., ed. 2006. Social Divisions. Basingstoke: Palgrave Macmillan.
Phillips, S. D. 2011. Disability and Mobile Citizenship in Postsocialist Ukraine.
Bloomington, IN: Indiana University Press.
Priestley, M. 2003. Disability: A Life Course Approach. Oxford: Polity Press.
Priestley, M., M. Stickings, E. Loja, S. Grammenos, A. Lawson, L. Waddington,
and B. Fridriksdottir. 2016. ‘The Political Participation of Disabled People in
Europe: Rights, Accessibility and Activism.’ Electoral Studies 42:1–9.
Prince, M. J. 2009. Absent Citizens: Disability Politics and Policy in Canada.
Toronto: University of Toronto Press.
Prince, M. J. 2012. ‘Canadian Disability Activism and Political Ideas: In and
Between Neo-Liberalism and Social Liberalism.’ Canadian Journal of Disability
Studies 1(1). Retrieved 18 March 2020 (https://cjds.uwaterloo.ca/index.php/cjds/
article/download/16/16).
Pyaneandee, C. 2019. International Disability Law: A Practical Approach to the United
Nations Convention on the Rights of Persons with Disabilities. Abingdon: Routledge.
Quinn, G. and T. Degener. 2002. Human Rights and Disability: The Current Use and
Future Potential of United Nations Human Rights Instruments in the Context of
Disability. New York: United Nations.
Ratzka, A. 1982. ‘Hemservice – i Vems Regi? [House Service – in Whose Direction?].’
Svensk Handikapptidskrift [Swedish Handicap Journal]. Retrieved 6 March 2020
(www.independentliving.org/docs3/ar1982.html).
Rioux, M., L. A. Masser, and M. Jones, eds. 2015. Critical Perspectives on Human
Rights and Disability Law. Leiden: Martinus Nijhoff Publishers.
Sabatello, M. and M. Schulze, eds. 2013. Human Rights & Disability Advocacy.
Philadelphia, PA: University of Pennsylvania Press.
Scotch, R. K. 1989. ‘Politics and Policy in the History of the Disability Rights
Movement.’ The Milbank Quarterly 67(Sup 2):380–400.
Scotch, R. K. 2001. From Good Will to Civil Rights: Transforming Federal Disability
Policy. 2nd ed. Philadelphia, PA: Temple University Press.
Sellerberg, A. 1999. ‘“Soon There’ll Be a Society for Every Bit of the Intestine”: The
Complexities of Positioning Disability in Sweden Today.’ Scandinavian Journal of
Disability Research 1(2):86–98.
Disability Rights Activists Claim “Full Participation! Now!” ’ Disability & Society
33(4):539–61.
Sépulchre, M. and L. Lindberg. 2020. ‘Swedish Disability Activism: From Welfare to
Human Rights?’ Pages 298–411 in The Routledge Handbook of Disability Activism,
edited by M. Berghs, T. Chataika, Y. El-Lahib, and A. K. Dub. New York:
Routledge.
Sépulchre, M., R. Lindqvist, V. Schuller, K. K. Bøhler, and K. Klette Böhler. 2018.
‘How Do Persons with Psychosocial Disabilities Experience and Practice Active
Citizenship in Education and Work?’ Pages 120–36 in Understanding the Lived
Experiences of Persons with Disabilities in Nine Countries: Active Citizenship and
Disability in Europe Volume 2, edited by R. Halvorsen, B. Hvinden, J. Beadle
Brown, M. Biggeri, J. Tøssebro, and A. Waldschmidt. London: Routledge.
Sépulchre, M., V. Schuller, J. Kline, and A. M. Kittelsaa. 2018. ‘Gendering Active
Citizenship: Experiences of Women with Disabilities.’ Pages 156–73 in
B. Hvinden, J. Beadle Brown, M. Biggeri, J. Tøssebro, and A. Waldschmidt.
London: Routledge.
Shakespeare, T. 1993. ‘Disabled People’s Self-Organisation: A New Social
Movement?’ Disability, Handicap & Society 8(3):249–64.
Shakespeare, T. 2004. ‘Social Models of Disability and Other Life Strategies.’
Scandinavian Journal of Disability Research 6(1):8–21.
Shakespeare, T. 2006. Disability Rights and Wrongs. London: Routledge.
Shakespeare, T. and N. Watson. 1997. ‘Defending the Social Model.’ Disability &
Society 12(2):293–300.
Shakespeare, T. and N. Watson. 2001. ‘Making the Difference. Disability, Politics
and Recognition.’ Pages 546–64 in Handbook of Disability Studies, edited by G. L.
Albrecht, K. D. Seelman, and M. Bury. Thousand Oaks, CA: Sage Publications.
Shapiro, I. 2012. ‘On Non-Domination.’ University of Toronto Law Journal
62:293–335.
Shapiro, J. P. 1993. No Pity: People with Disabilities Forging a New Civil Rights
Movement. New York: Three Rivers Press.
Shuttleworth, R. and H. Meekosha. 2012. ‘The Sociological Imaginary and
Disability Enquiry in Late Modernity.’ Critical Sociology 39(3):349–67.
Sjöberg, M. 2010. Bana Väg: Välfärdspolitik Och Funktionshinder [Pave the Way:
Welfare Policy and Disability]. Örlinge: Gidlunds Förlag.
Skrentny, J. D. 2002. The Minority Rights Revolution. Cambridge, MA: The Belknap
Press of Harvard University Press.
Söder, M. 2009. ‘Tensions, Perspectives and Themes in Disability Studies.’
Söder, M. and A. Hugemark. 2016. Bara Funktionshindrad? edited by M. Söder and
A. Hugemark. Malmö: Gleerups.
Söder, M., A. Hugemark, and L. Grönvik. 2016. ‘Intersektionalitet Och
Funktionsförmåga.’ Pages 13–34 in Bara funktionshindrad? Funktionshinder och
intersektionalitet, edited by M. Söder and A. Hugemark. Malmö: Gleerups.
Soldatic, K. and A. Chapman. 2010. ‘Surviving the Assault? The Australian
Disability Movement and the Neoliberal Workfare State.’ Social Movement
Studies 9(2):139–54.
Thomas, C. 1999. Female Forms. Maidenhead: Open University Press.
Thomas, C. 2004. ‘How Is Disability Understood? An Examination of Sociological
Approaches.’ Disability & Society 19(6):569–83.
Tøssebro, J. 2004a. ‘Disability, Citizenship and Community Care. A Case for
Welfare Rights?’ European Journal of Social Work 7:113–14.
Tøssebro, J. 2004b. ‘Introduction to the Special Issue: Understanding Disability.’
Tøssebro, J., I. S. Bonfils, A. Teittinen, M. Tideman, R. Traustadóttir, and H. T.
Vesala. 2012. ‘Normalization Fifty Years Beyond-Current Trends in the
Nordic Countries.’ Journal of Policy and Practice in Intellectual Disabilities
9(2):134–46.
Traustadóttir, R. 2009. ‘Disability Studies, The Social Model And Legal
Developments.’ Pages 1–16 in The UN Convention on the Rights of Persons with
Disabilities: European and Scandinavian Perspectives, edited by M. Oddný
Arnardóttir and G. Quinn. Leiden: Martinus Nijhoff Publishers.
Trevisan, F. 2014. ‘Scottish Disability Organizations and Online Media: A Path to
Empowerment or “Business as Usual”?’ Disability Studies Quarterly 34(3).
Retrieved 18 March 2020 (https://dsq-sds.org/article/view/3359/3648).
Trevisan, F. 2017. Disability Rights Advocacy Online – Voice, Empowerment and
Global Connectivity. New York: Routledge.
Trevisan, F. and P. Reilly. 2014. ‘Ethical Dilemmas in Researching Sensitive Issues
Online: Lessons from the Study of British Disability Dissent Networks.’
Information Communication & Society 17(9):1131–46.
United Nations. 2003. ‘The International Year of Disabled Persons 1981.’ Retrieved
6 March 2020 (www.un.org/esa/socdev/enable/disiydp.htm).
United Nations. 2018. ‘Special Rapporteur 1994–2002: Bengt Lindqvist.’ Retrieved
6 March 2020 (www.un.org/development/desa/disabilities/about-us/history-of-disability-
and-the-united-nations/special-rapporteur-1994-2002-bengt-lindqvist.html).
UPIAS. 1976. Fundamental Principles of Disability. London: Union of the Physically
Impaired Against Segregation.
Vehmas, S. and N. Watson. 2014. ‘Moral Wrongs, Disadvantages, and Disability:
A Critique of Critical Disability Studies.’ Disability & Society 29(4):638–50.
Vernon, A. 1999. ‘The Dialectics of Multiple Identities and the Disabled People’s
Movement.’ Disability & Society 14(3):385–98.
Waldschmidt, A. 2017. ‘Disability Goes Cultural. The Cultural Model of Disability
as an Analytical Tool.’ Pages 19–28 in Culture – Theory – Disability: Encounters
between Disability Studies and Cultural Studies, edited by A. Waldschmidt,
H. Berressem, and M. Ingwersen. Bielefeld: Transcript Verlag.
Waldschmidt, A., A. Karačic, A. Sturm, and T. Dins. 2015. ‘ “Nothing About Us
Without Us”: Disability Rights Activism in European Countries – A Comparative
Analysis.’ Moving the Social: Journal of Social History and the History of Social
Movements 53:103–37.
Wendell, S. 1989. ‘Toward a Feminist Theory of Disability.’ Hypatia 4(2):104–24.
WHO. 1980. International Classification of Impairments, Disabilities and Handicaps.
Geneva: World Health Organization.
WHO. 2011. World Report on Disability. Geneva: World Health Organization.
WHO. 2020. ‘International Classification of Functioning, Disability and Health
(ICF).’ Retrieved 6 March 2020 (www.who.int/classifications/icf/en/).
Zola, I. K. 2005. ‘Toward the Necessary Universalizing of a Disability Policy.’
The Milbank Quarterly 83(4):1–27.
Creswell, J. 1998. Qualitative Inquiry and Research Design: Choosing among Five
Traditions. London: Sage.
Duncan, D. F. 1989. ‘Content Analysis in Health Education Research: An
Introduction to Purposes and Methods.’ Health Education 20(7):27–31.
Hookway, N. 2008. ‘“Entering the Blogosphere”: Some Strategies for Using Blogs in
Social Research.’ Qualitative Research 8(1):91–113.
Kantar Sifo. 2018, ‘Räckviddsrapport ORVESTO Konsument 2017 Helår [ORVESTO
Consumer Scope Report 2017 full year]’. Retrieved 11 May 2020 (https://www.
kantarsifo.se/sites/default/files/orvesto_konsument_rackviddsrapport_2017_helar.pdf)
Ljungberg, E. 2011. Full Delaktighet. Nu! 69 Blogginlägg Om Rätten Att Leva Det Liv
Du Vill, Oavsett Funktionsförmåga [Full Participation. Now! 69 Blog Posts about
the Right to Live the Life You Want, Regardless of Functional Capacity].
Stockholm: STIL.
Myndigheten för Tillgängliga Medier [Swedish Agency for Accessible Media]. 2020.
‘Dagstidningar Som Är Taltidning [Daily Newspapers That Are in Audio
Format].’ Retrieved 20 March 2020 (www.mtm.se/produkter-och-tjanster/
taltidningar/dagstidningen-som-taltidning/aktuell-lista).
Papacharissi, Z. 2010. A Private Sphere. Democracy in a Digital Age. Cambridge:
Polity Press.
Seale, C. 1999. The Quality of Qualitative Research. London: Sage Publications.
Sveningsson, M. 2009. ‘How Do Various Notions of Privacy Influence Decisions
in Qualitative Internet Research?’ Pages 69–87 in Internet Inquiry: Conversations
about Method, edited by A. Markham and N. K. Baym. Thousand Oaks,
CA: Sage.
Trevisan, F. and P. Reilly. 2014. ‘Ethical Dilemmas in Researching Sensitive Issues
Online: Lessons from the Study of British Disability Dissent Networks.’
Information Communication & Society 17(9):1131–1146.
Whiteman, N. 2012. Undoing Ethics. Rethinking Practice in Online Research. New
York: Springer.
Altermark, N. and H. Nilsson. 2017. ‘Det Handlar Om Miljarder’: En Metodanalys
Av Hur Assistansfusket Bedöms Av Svenska Myndigheter [It Is about Billions. A
Method Analysis of How Personal Assistance Cheats Are Assessed by Swedish State
Agencies]. Stockholm: STIL, Founders of Independeng Living in Sweden.
Duignan, B. 2010. ‘Brown v. Board of Education of Topeka.’ Encyclopaedia
Britannica. Retrieved March 8, 2020 (www.britannica.com/event/Brown-v-Board-
of-Education-of-Topeka).
Ekensteen, V. 1968. På Folkhemmets Bakgård [On the People’s Home’s Backyard].
Halmstad: Hallandspostens Boktrykeri.
Garland-Thomson, R. 1997. Extraordinary Bodies: Figuring Physical Disability in
American Culture and Literature. New York: Columbia University Press.
Nationalencyklopedin [Swedish National Encyclopedia]. 2020. ‘Förmån [Privilege].’
Retrieved March 5, 2020 (www.ne.se/uppslagsverk/ordbok/svensk/förmån).
Skatteverket [Swedish Tax Agency]. 2019. ‘ROT and RUT Work.’ Retrieved
8 March 2020 (www.skatteverket.se/servicelankar/otherlanguages/inenglish/
businessesandemployers/declaringtaxesbusinesses/rotandrutwork.4.8dcbbe4142d383
02d793f.html).
Berlin, I. 2002. ‘No Two Concepts of Liberty.’ In Liberty, edited by H. Hardy. Oxford:
Oxford Scholarship Online. Retrieved 18 March 2020 (www.oxfordscholarship.
com/view/10.1093/019924989X.001.0001/acprof-9780199249893).
de Tocqueville, A. 1876. Democracy in America Volume 1, translated by F. Bowen.
6th ed. Boston, MA: John Allyn.
DPI. 2020. ‘Disabled Peoples’ International.’ Retrieved 6 March 2020 (www.
disabledpeoplesinternational.org).
London: Hurst.
Government of Sweden [Regeringen]. 2015. ‘Regleringsbrev För Budgetåret 2016
Avseende Försäkringskassan [Instruction Letter for the Budget Year 2016
Regarding the Swedish Social Insurance Agency].’ Retrieved 22 January 2020
(www.esv.se/statsliggaren/regleringsbrev/?RBID=17015).
HCK. 1972. Ett Samhälle För Alla [A Society for Everyone]. Stockholm:
Handikappsförbundens Centralkommitté [Central Committee of the Disability
Federation].
Holston, J. 2008. Insurgent Citizenship. Disjunctions of Democracy and Modernity in
Lewin, B. 1998. Funktionshinder Och Medborgarskap [Disability and Citizenship].
Uppsala: Department of Public Health and Caring Sciences.
McCall, L. 2005. ‘The Complexity of Intersectionality.’ Signs 30(3):1771–1800.
Swedish National Board of Health and Welfare [Socialstyrelsen]. 2010. Alltjämt
Ojämlikt! Levnadsförhållanden För Vissa Personer Med Funktionsnedsättning [Still
Unequal! The Living Conditions of Certain Persons with Impairment]. Stockholm.
Altermark, N. 2017. ‘Hur Legitimeras Socialpolitiska Besparingar ? [How Are Social
Political Savings Legitimated?].’ Socialvetenskaplig Tidskrift 2:107–26.
Beckett, A. 2006. Citizenship and Vulnerability: Disability and Issues of Social and
Policy for Persons with Disabilities.’ European Journal of Social Work. Retrieved
the Rights of Persons with Disabilities?’ Laws 5(2). Retrieved 18 March 2020
Brennan, C., R. Traustadóttir, J. Rice, and P. Anderberg. 2018. ‘“Being Number
University Press.
Cohen, E. F. 2018. The Political Value of Time: Citizenship, Duration, and
Democratic Justice. Cambridge: Cambridge University Press.
Changing Public Sphere.’ Sociological Research Online 5(3). Retrieved 18 March
2020 (http://www.socresonline.org.uk/5/3/ellison.html).
Fraser, N. 1995. ‘From Redistribution to Recognition? Dilemmas of Justice in a
“Post-Socialist” Age.’ New Left Review 1(212):68–93.
Garthwaite, K. 2014. ‘Fear of the Brown Envelope: Exploring Welfare Reform
with Long-Term Sickness Benefits Recipients.’ Social Policy and Administration
48(7):782–98.
Nationellt Mål Och Inriktning För Funktionshinderspolitiken [Proposition of the
Government of Sweden 2016/17:188 National Goal and Direction for Disability
Politics]. Stockholm.
Minow, M. 1985. ‘Learning to Live with the Dilemma of Difference: Bilingual and
Special Education.’ Law and Contemporary Problems 48(2):157–211.
Oliver, M. 1996. Understanding Disability: From Theory to Practice. Basingstoke:
Macmillan.
Pyaneandee, C. 2019. International Disability Law: A Practical Approach to the United
Nations Convention on the Rights of Persons with Disabilities. Abingdon: Routledge.
Disability Rights Activists Claim “Full Participation! Now!” ’ Disability & Society
33(4):539–61.
Sépulchre, M. 2020. ‘Ensuring Equal Citizenship for Disabled People: A Matter of
Rights or a Matter of Costs?’ ALTER – European Journal of Disability Research /
Revue Européenne de Recherche Sur Le Handicap. 14(2):114–27
Waldschmidt, A. and M. Sépulchre. 2019. ‘Citizenship – Reflections on a Relevant but
Ambivalent Concept for Persons with Disabilities.’ Disability & Society 34(3):421–48.
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Disability and Citizenship Studies

Book · August 2020

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Marie Sépulchre is a SYLFF (Sasakawa Young Leaders Fellowship Fund)

Critical Disability Studies and the Disabled Child

Disability, Globalization and Human Rights

Reimagining Disablist and Ableist Violence as Abjection

Identity Construction and Illness Narratives in Persons with Disabilities

Disability and Citizenship Studies

Women with Disabilities as Agents of Peace, Change and Rights

For a full list of titles in this series, please visit: www.routledge.com/series/

ISBN: 978-0-367-46726-5 (hbk)

Typeset in Times New Roman

Figures and tables vi

1 ‘This is not citizenship’ 1

2 Exploring the construction of citizenship in Sweden 28

3 Understanding disability and disability activism 62

4 Analysing the claims of disability activists in Sweden 102

5 What problems do the disability activists highlight? 118

6 What solutions do the disability activists propose? 150

7 Understanding the disability activists’ claims through

ADA Americans with Disabilities Act

Writing in English to report a study based on the analysis of Swedish empirical

In analogy to Magritte’s painting, Figure 1.1, which represents a passport

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

Contemplating the structure of the English society, Marshall (1992) examined

Hence, Skrentny’s (2002) analysis calls attention to similarities and differences

We need a conceptual framework which is adequate to the task of

1.1 Outline of the book

1.2 Citizenship studies and disability

1.2.1 A multi-disciplinary research field

[T]he idea of active citizenship is shaped according to a male, middle-

1.2.3 Outlining the concept of citizenship for this book

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