Tensions and unity in the struggle for citizenship: Swedish disability rights activists claim ‘Full Participation! Now!’

Abstract

This article analyses the claims of contemporary disability rights activists mobilising in a context where de facto second-class citizenship co-exists with legal and political declarations about the rights of disabled people. As an empirical case, it focuses on the blog ‘Full Participation.Now’, which was initiated by disability rights activists in Sweden. Drawing upon citizenship research, the article points to the tensions and dilemmas featuring the bloggers’ demand for participation and equality, as well as the challenges relative to their struggle. Although the bloggers formulate contrasting arguments, the article highlights that the activists share a common aspiration for ‘full citizenship’.

Keywords:

• Disability
• citizenship
• activism
• rights
• digital media
• Sweden

Points of interest

•	The aim of this article is to analyse a blog named ‘Full Participation.Now’, which was written by disability rights activists in Sweden struggling for full citizenship.
•	To understand the context of the blog, the article sketches the history of the citizenship of disabled people in Sweden.
•	The content analysis of the 323 blogposts found that the bloggers claim recognition for the equality of disabled people as full citizens, as well as recognition for the injustices and the situation of second-class citizenship they experience.
•	Although they emphasise different aspects, the blogposts share a common claim for full citizenship understood in terms of social justice based on equality.
•	The article suggests that, while recognition claims are crucial to establish disabled people as equal citizens, disability rights activists should also emphasise redistribution claims.

Introduction

We live in a time of unprecedented recognition of the rights of disabled people. Following the struggle of the international disability rights movement – the ‘last civil rights movement’ (Driedger 1989) – many countries adopted anti-discrimination legislations and measures to protect and support the rights of disabled people. An important milestone at the international level was the adoption of the United Nations Convention on the Rights of Persons with Disabilities (CRPD) in 2006 (UN 2006; Lang 2009). The fact that the CRPD counts, to date, 175 State Parties (United Nations Human Rights Office of the High Commissioner 2017) and that many countries and regions designed strategies for its implementation reflects a widespread political agreement that disabled people should have the right to be fully included and participate in society (for an overview, see Flynn 2015). At the same time, we live in a context of neoliberalism and austerity, with widespread political agreement that public expenses should be limited (Isin and Turner 2007; Taylor-Gooby 2004). The erosion of the welfare state affected a wide range of citizens and had a particularly negative impact on the lives of disabled people (Altermark 2017a; Briant, Watson, and Philo 2013; Dodd 2016; Garthwaite 2011; Grover and Soldatic 2013; Hande and Kelly 2015; Harwood 2014; Hauben et al. 2012). Citizens mobilise to challenge this status quo and some argued that a new wave of disability rights activism emerged to struggle ‘against the cuts’ (Gill and Schlund-Vials 2014; Pearson and Trevisan 2015). Trevisan (2017a, 2017b) called attention to their use of digital media.

Scholars highlighted that the disabled people’s struggle for citizenship implies a series of challenges and dilemmas, both within the movement – as disabled people are diverse in terms of gender, social class, ethnicity, impairment and so forth – and with regard to the content of their claims towards society (Barton 1993; Beckett 2006; Hugemark and Roman 2007). However, few studies analyse how these challenges and dilemmas are addressed at the empirical level (notable exceptions are Beckett 2006 and Hugemark and Roman 2007) and how these are played out in disability activism using digital media. This article focuses on a case of online disability rights activism in Sweden and examines a blog called ‘Full Participation.Now’,¹ which was created by Swedish activists aiming to put the issue of disability on the political agenda. This blog was a unique initiative that brought together a variety of Swedish disability rights activists during a period of five years. The choice of studying disability rights activism in Sweden is motivated by the fact that, while Sweden is often considered an exemplary case when it comes to disability policies, little is known about its disability rights movement and about the changes regarding disability politics that took place in recent years (Brennan et al. 2012, 2016; Lindqvist 2000; Therborn 2017).

This article considers disability rights activism as a struggle for citizenship (Barton 1993; Carey 2009; Prince 2009). While citizenship scholars rarely address the case of disability, research about citizenship and about the citizenship struggles of other marginalised groups of citizens suggests that these groups face comparable challenges and dilemmas (e.g. Young 1989; Fraser 1995; Lister 2007; Holston 2008). This article therefore suggests that citizenship offers a useful lens to analyse the claims of disability rights activists. The concept of citizenship, it is argued, is useful, both to get a more nuanced understanding of the complexity of the claims formulated by disability rights activists and to link these issues to wider political debates concerning full membership in a state.

The article is structured as follows. The following section outlines how citizenship is understood in this study and points to the tensions and contradictions characterising this concept. The subsequent section provides an overview of the development of citizenship rights of disabled people in Sweden. Next, the article introduces the blog ‘Full Participation.Now’ and the methods used in this study. The following part presents the analysis of the blog ‘Full Participation.Now’ according to three themes – participation, equality and politics – and sheds light upon the nature of the bloggers’ claims and the tensions and dilemmas underpinning their arguments. Finally, the article concludes by pointing out that, in spite of the tensions and dilemmas, the blogposts share a common claim for full citizenship and by suggesting some implications of this study for contemporary disability rights activism.

Citizenship: a developing institution featuring tensions and contradictions

The concept of citizenship has been used in various studies about disability (see, for example, Beckett 2006; Bezmez and Yardımcı 2010; Carey 2003a; Duffy 2012; Emery 2007; Halvorsen and Hvinden 2013; Lid 2015; Marks 2001; Meekosha and Dowse 1997; Phillips 2011; Prince 2009; Walmsley 1991) and the number of articles about citizenship and disability increased dramatically in recent years (Sépulchre 2017). Rioux and Valentine (2006, 54) argued that ‘citizenship is a strategically important and contentious idea that is central to an understanding of disablement’. However, they warned that citizenship is a ‘messy concept’ (2006, 54) because its boundaries are contested (see also Bussemaker and Voet 1998; Lister 2003). At the outset, I want to clarify that, although academic literature has used the notion of citizenship for a variety of issues, this article understands citizenship as membership in a state (Cohen 2009; Joppke 2007; Marshall 1992).

The notion of citizenship is both inclusionary and exclusionary because it marks a difference between those who are and those who are not, or only partially, members of a state (Cohen 2009; Lister 2003). However, the meaning of citizenship is not fixed; it is a ‘developing institution’ (Marshall 1992, 18). In his seminal essay about citizenship and social class, Marshall argued that, over the past centuries, more and more citizenship rights have been granted to an increasing part of the population of England. Marshall (1992) distinguished between three types of rights: civil, political and social. According to Cohen (2009), this distinction is useful because it shows that citizenship is not a unitary status but a status consisting of various rights. In contrast to Marshall (1992) who emphasised that more and more people had been granted ‘full citizenship’ by the turn of the twentieth century, Cohen (2009) shed light upon the enduring existence of ‘semi-citizenships’ as some citizens do not possess full citizenship rights. This observation concerns disabled people, whose situation of semi-citizenship has been documented by a number of studies (for example, Halvorsen et al. 2018; Meekosha and Dowse 1997; Prince 2009; Walmsley 1991).

Although the state is the only authority that can grant citizenship rights (Cohen 2009, 29), social movements play a role in the development of citizenship by expressing the aspirations of social collectivities and asking for social change (Barbalet 1988). In his study about the development of citizenship in Brazil, Holston (2008) observed a shift from ‘differentiated citizenship’ – a legal system in which different categories of citizens had access to different citizenship rights – to ‘universal membership’ – a legal system in which all adult citizens were in principle granted equal citizenship rights. This shift happened, among other things, with the abolition of the requirements of property and literacy as conditions for some citizenship rights. Consequentially, Holston (2008) argued, groups of previously marginalised citizens became increasingly aware of their formal rights and started to fight, in courtrooms and through demonstrations, to obtain their rights in reality, which he called ‘insurgent citizenship’. As such, the concept of citizenship provides a tool for marginalised groups of citizens struggling for social justice (Lister 2007). These struggles take place in various spaces and the Internet became an important feature of contemporary civic participation (Olsson 2016; Papacharissi 2010). With regard to disability, scholars argued that digital media offer new opportunities for participation in the public space for disabled people, on the condition that the technology is available and accessible (Ellis et al. 2015; Trevisan 2014, 2017b).

The meaning of citizenship develops in relation to the legal framework and ideals of a particular society (Marshall 1992; Somers 1994). Various scholars argued that the ideal of citizenship is based on able-bodiedness and is thus exclusionary of disabled people (Hastings and Thomas 2005; Meekosha and Dowse 1997; Snyder and Mitchell 2010). Yet the notion of citizenship has also been used to conceptualise the ideal of ‘full citizenship’ (Marshall 1992) and the inclusion of disabled people in society. For example, Duffy (2012) argued that personalised welfare measures need to be designed according to a ‘citizenship model’, which he understands on the basis of the claims formulated by the disability rights movement, and contrasts to a ‘professional gift model’, in which welfare provisions are controlled and shaped by professionals. This reflects the argument of the disability rights movement claiming ‘rights not charity’ (Barton 1999). However, even seemingly inclusive notions of citizenship can exclude disabled people. For example, Altermark (2017b) argued that policies formulated in terms of citizenship are in fact exclusionary because they ask disabled people to conform to ableist ideals of independence and rationality (see also Titchkosky 2003). In sum, it appears that the notion of citizenship can be used to justify the exclusion of disabled people as well as to claim their inclusion in society. To take another example, the notion of ‘active citizenship’ is exclusionary when used to connect citizenship rights to participation in paid work but is inclusionary when used to emphasise the importance for citizens to exercise their citizenship rights and participate in various societal arenas (Barton 1993; Halvorsen et al. 2018; Morris 2005). Rioux and Valentine (2006) argued that different conceptions of equality and of disablement are found in policy, administrative and judicial documents concerning the entitlements for disabled people. Depending on the understanding of equality as equal treatment, equal opportunity or equal outcome, disabled people are subjected to paternalist decisions, receive charitable privileges or are granted social rights because of their status as citizens respectively (Rioux and Valentine 2006). Indeed, empirical studies indicate that different and contradictory logics of citizenship exist simultaneously in society. For example, tracing the development of the citizenship of persons with intellectual disabilities in the United States, Carey (2003b, 2009) highlighted that different logics of citizenship were used by different groups of citizens throughout the twentieth century.

Hence, citizenship can have different meanings for different people, which compromises its inclusive potential for disabled people. However, there can also be tensions in the citizenship claims of a given social movement. Fraser (1995) argued that some struggles for social justice are ‘bivalent’ because they need to include both claims for recognition and redistribution in order to get ‘parity of participation’; that is, the situation where people can interact with each other as peers (Fraser and Honneth 2003, 36). Fraser (1995) observed that these movements face a ‘redistribution–recognition dilemma’ because, while they need both claims, these can lead to potentially contradictory outcomes. To paraphrase Fraser (1995, 80), disability rights activists face the following dilemma: how is it possible to fight simultaneously to abolish disability differentiation and valorise disability specificity (see also Dodd 2016)? This dilemma is visible in the discussions among disability scholars regarding whether the disability rights movement can be characterised as a ‘new social movement’ and, in particular, the discussions concerning the importance of post-materialist values (i.e. recognition claims) compared to materialist values (i.e. redistribution claims) (Oliver 1997; Shakespeare 1993). Based on interviews with disability rights activists in the United Kingdom, Beckett (2006) concluded that the disability rights movement could not be characterised as a new social movement because, next to recognition claims, socio-economic issues were still a central concern of the activists. Similarly, Hugemark and Roman (2007) found that both recognition and redistribution claims were included in the disability rights movement in Sweden, but they observed that these two types of claims were balanced differently in different disability organisations.

Tensions and contradictions appear when citizenship is considered in relation to a particular context or situation. In his essay, Marshall (1992) observed that citizenship is based on a principle of equality but develops in a context of socio-material inequalities, implying that citizens have unequal resources to exercise their citizenship rights. Following a similar reasoning, citizenship scholars demonstrated that other dimensions compromise the equality of citizenship status of certain individuals, be it gender (Lister 2003; Walby 1994), ethnicity or race (Harrison 1991; Kymlicka 1995), sexuality (Lister 2002; Richardson 2001), age (Blackman and France 2001; Cohen 2005), disability (Meekosha and Dowse 1997; Walmsley 1991) and so forth. Young (1989) interpreted these contradictions as a tension between ‘universal’ and ‘particular’, and highlighted that, while citizenship is a universal status providing the same rights to all citizens, de facto inequality arises when the particular situations of certain groups of citizens are not taken into account. Of particular importance for disabled people is the recognition that citizenship is ‘embodied’, and thus particular, as opposed to an abstract universal ideal (Hastings and Thomas 2005). This relates in turn to a tension between equality of treatment and the right to be different (Lister 1997). This concerns disabled people who, as mentioned in the Introduction, have obtained equal citizenship rights in many countries but often face unequal citizenship in practice. Claiming rights in such a situation is a challenge, which Minow (1985) conceptualised as the ‘difference dilemma’, because both asking for equality of treatment and asking for differentiated treatments may disadvantage persons who have different needs than ‘able-bodied’ citizens. This dilemma, as mentioned earlier, was examined by Fraser (1995) in terms of redistribution and recognition.

This section argued that citizenship, understood as membership in a state, is a developing institution and that groups of semi-citizens struggle for full citizenship. Focusing on the claims of groups of marginalised citizens claiming social justice, this section highlighted that citizenship struggles imply tensions, contradictions and dilemmas. In the following, I analyse the blog ‘Full Participation.Now’ to study empirically a case of citizenship struggle concerning disability but, before that, to contextualise the study, next section traces the development of the citizenship rights of disabled people in Sweden.

Citizenship rights in Sweden

This section provides a broad overview of political and legal changes through which more and more citizenship rights have been granted to disabled people, either by abolishing conditions that restricted their rights or by adopting new measures to enable them to exercise their rights. Concerning civil rights, the sterilisation laws in vigour since 1935 were abolished in 1975² (SFS [Swedish Codes of Statutes] 1975:580). Sign language was officially recognised as the mother tongue of deaf people in 1981 (Prop 1980–81:100). Large residential institutions for persons with intellectual disabilities were closed down from the 1970s onwards (Ericsson 2002). In 1989, legal incapacity was abolished (SFS 1988:1251). In 1999, Sweden adopted a law against discrimination on the ground of disability in employment. This law was merged with other anti-discrimination legislations in 2008 (SFS 2008:567) and amended in 2014³ to add accessibility as a ground for discrimination (SFS 2014:958). With regard to political rights, the right to vote was extended to all adult Swedish men in 1918 and women in 1921, except for citizens who had not done their military service (until 1922), citizens who received financial assistance from the state (until 1948) and people who lacked legal capacity (until 1989). Sweden guarantees the freedom of association and, from the 1960s onwards, disability organisations have received financial support from the state. Concerning social rights, school attendance became compulsory for children in general (i.e. without impairment) in 1882, for children with hearing impairment in 1889, for children with visual impairment in 1896, for children with intellectual impairment considered ‘educable’ in 1944 and for children with mobility impairment in 1962 (Bergval and Sjöberg 2012). The Swedish welfare state provides a series of services and benefits for disabled people. Probably the most remarkable law is the ‘Act Concerning Support and Service for Persons with Certain Functional Impairments’ (SFS 1993:387), which came into force in 1994 and introduced the right to personal assistance. Apart from these legislations, Sweden has adopted various strategies aiming at including disabled people in society. In 1999, the Swedish government wrote a proposition entitled ‘From Patient to Citizen – A National Plan of Action for Disability Politics’ in which it outlined the priorities for 2000–2010 (Prop. [1999] 2000:79). Building upon this proposition, a new strategy named ‘A Strategy for the Realisation of Disability Politics 2011–2016’ was launched in 2011 (Government Offices of Sweden 2011) and, in 2017, the government presented a new proposition called ‘National Goal and Direction for Disability Politics’ (Prop. 2016–17:188). Last but not least, Sweden ratified the CRPD in 2008.

This overview indicates a development from a differentiated citizenship regime to equal citizenship for disabled people in Sweden. However, there remains a gap between the goal of inclusion and the reality experienced by disabled people (Government Offices of Sweden 2010; Swedish National Board of Health and Welfare 2010). Commenting upon Sweden’s initial report on the implementation of the CRPD (Regeringskansliet [Ministry of Health and Social Affairs] 2011), the UN Committee on the Rights of Persons with Disabilities (2014) expressed a series of concerns and urged Sweden to provide reasonable accommodation in all spheres of society, increase accessibility and afford sufficient financial assistance so that people can live independently in the community. Moreover, a look at the recent development of Swedish welfare expenditure shows that, although the total social protection expenditure has increased (from 10,679 EUR per inhabitant in 2007 to 13,632 EUR per inhabitant in 2013; Eurostat 2017), the share of disability benefits within the total benefits has decreased (from 15% in 2007 to 12% in 2013; Eurostat 2017). With regard to personal assistance, which is a key measure for independent living, a report from the Swedish Social Insurance System (Social Security Agency 2015) reveals that, as a result of stricter regulations, fewer applicants have been granted personal assistance since 2007 (see also Brennan et al. 2016). According to Altermark (2017a), the Swedish government legitimises these cuts by constructing personal assistance as a ‘cost problem’. In sum, while Sweden grants full citizenship rights to all its adult citizens with disabilities, recent developments suggest that the possibilities for exercising these rights are threatened as social benefits for disabled people are being restricted. It is in this context that a group of Swedish disability rights activists decided to write a blog to claim ‘Full Particiption.Now’.

Analysing the blog ‘Full Participation.Now’

Although it is not representative of all disability activism in Sweden, the blog ‘Full Participation.Now’ was a unique initiative that brought together a range of people involved in Swedish disability politics, most of whom had the experience of living with impairment. The blog was launched five months before the general Swedish elections of 2010 with the aim of putting the topic of disability on the political agenda and informing people about the reality of disability, as spelled out by Erik Ljungberg, the initiator of the blog:

Yes, you are now reading the first sentence of a new blog. Is a new blog really needed in the context of abundance of information in which we are currently forced to live? Yes, we are 12 people who are convinced of this and who will blog every day for five months and make an impact in a Sweden you may not know. It is about exclusion, discrimination and the fear that politicians in fact do not think that these are important questions at all. You will not only read dark journalism here – but a strong will to change. ‘Information’ if you like. […] In 143 blogposts we will provide you with the truth. Without sugar. We demand Full Participation! Now! (From the blog ‘FullParticipation.Now’)

The blog started with 12 disability rights activists. These activists had been active in the Swedish disability movement for a long time and most of them had occupied leading positions in disabled people’s organisations. The blog claims the rights of disabled people in general and follows in the tradition of the disability rights movement, in contrast to the patients’ rights movement (Hughes 2009). Yet it is worth noting that most activists were members of organisations for persons with mobility impairment and personal assistance users. After reaching their target of writing every day until the elections, some of the initial bloggers continued writing and new bloggers joined the project. In total, 57 bloggers wrote 323 posts over a period of five years (between 2010 and 2015).⁴ Most blogposts stand on their own – as opposed to being part of threading conversations – and are about one or two A4 pages long. It follows that the blog includes a diverse set of claims rather than a coherent political manifesto. It is also worth noting that the blog ‘Full Participation.Now’ is a ‘semi-private’ space (Trevisan and Reilly 2014). It is public because it is accessible to all Internet users, without prior registration, and because it aims to influence discussions in the public sphere. It is private because the bloggers indicate that they write as private persons – only few blogposts are written in the name of the representative of a disability organisation or political party – from their private space – as some bloggers specify that they write from their home or summer house. Further, since it is a virtual sphere, the blog enables the participation of activists living in different geographical areas in Sweden and facilitates the participation of activists with mobility and speech impairment. By contrast, it probably excludes activists who do not have access to the technology or have difficulties in writing.

It is difficult to assess the impact of the blog but a few things can be highlighted. First, the blog was written in Swedish, which means that the blog was directed to a Swedish-speaking audience. Second, some blogposts directly address politicians who replied on the blog on various occasions. Moreover, some politicians were invited to write blogposts and explain the relevance of their election programme for disabled people. Third, the total number of comments on the blogposts (n = 1254) and of Facebook recommendations (n = 20,384) gives a hint of the importance of the blog’s distribution over the Internet. Fourth, a selection of the first year’s blogposts was published as a book in 2011 (Ljungberg 2011), which suggests that the blog also reached offline readers.

To analyse the data, I used methods of inductive and deductive content analysis (Hsieh and Shannon 2005). I started by documenting as many aspects of the blog as possible in order to grasp the blog’s overall content and subsequently transferred the coding to an Excel sheet because I wanted to ‘count what is countable’ (Seale 1999); for example, the number of references to a particular law. Further, I coded all blogposts according to their main focus, which I then grouped into the five following categories: denounce injustice; participate in disability rights activism; participate in formal politics; increase visibility; and inform about rights. These categories reflect the various ways in which the bloggers sought to claim participation for disabled people. In a second phase of analysis, I re-read the blogposts and interpreted the Excel sheet through the lens of citizenship. In this article, I discuss three themes that emerged from this second phase: citizenship as a question of participation; citizenship as a question of equality; and citizenship as a political question. I am responsible for all steps of the content analysis but, in order to enhance the quality of the study, I took part in peer-debriefing sessions at the Sociology Department of Uppsala University to discuss the coding schemes and analysis methods (Creswell 1998).

A question of participation: claiming equal opportunities and visibility

The question of participation in society is a recurring topic in the blog. It appears that the bloggers refer to participation either in terms of equal opportunities or in terms of visibility. With regard to the former, the bloggers mention five conditions that enable participation in society (see Table 1) and write most frequently about accessibility and personal assistance, which corresponds to the political debates that were taking place in Sweden at the moment of writing.

Table 1. Conditions for participation mentioned in the blogposts.

Condition for participation	n	% (N = 323)
Accessibility	160	50
Personal assistance	154	48
Assistive devices	38	12
Financial benefits^a	34	11
Healthcare	27	8

^a Including sickness benefits, wage subsidy and pensions.

The claims for enabling participation are formulated according to different ideals of citizenship. As illustrated in the following excerpt, the bloggers argue that securing the conditions for participation benefits society because it enables disabled people to engage in paid work. As such, the blogpost seems to draw on the logics of ‘active citizenship’, emphasising the citizens’ duty to be active on the labour market, while pointing to the existence of disabling barriers. Yet the blogpost subsequently emphasises that disabled people need to get the same opportunities because they are equal citizens. In contrast to a logic of active citizenship stressing rights in exchange for participation in the labour market, this reflects, rather, a logic of ‘full citizenship’ implying that rights and duties relate to the individual’s membership in society (Marshall 1992):

Personal assistance is a crucial measure for many people today. With entitled assistance, many can participate in paid work instead of being on a sickness pension. […] Why should persons with impairment always be seen as the problem and not the other way around? Why should it be so difficult to adapt thresholds and doors? Because, what is in fact normal for a door opening? Does it not depend on who one considers? […] Persons with impairment only want to have the same opportunities to live on equal terms with all others. They do not ask for priority, only the same place in the queue as all others. (From the blog ‘Full Participation.Now’)

This excerpt also questions the idea of normality understood as ‘one size fits all’ and seeks to establish that society should adapt to disabled people and not the other way around. As such, the blogger poses that enabled participation is not a request for special treatments but a question of equality between citizens. This relates to the ‘difference dilemma’ (Minow 1985), which the blogger navigates by pointing to the need of securing the necessary conditions for enabling the participation of disabled people in society, while arguing that disabled people are ordinary citizens.

The claims for enabled participation are embedded in both hopes and fears for the future as activists point out that political and administrative decisions can have either a positive or negative impact on the conditions for participation of disabled people in society. Fear is particularly noticeable in the blogposts that sketch the consequences, or anticipated consequences, for persons who have lost, or risk losing, personal assistance:

My fear of the reassessment [of my right to personal assistance] is palpable and every day when I come home and see the mail in my entrance hall, I have a knot in the pit of my stomach. Think if it is [a letter from] the Social Insurance Agency? And in front of me, I see the fundament upon which my life is built unravel. (From the blog ‘Full Participation.Now’)

As illustrated by this excerpt, the bloggers are aware that the conditions for obtaining rights may change from one day to another. However, they fear that these issues are not recognised as important. Throughout the blog, the activists call attention to the fact that disabled people risk being expelled from the realm of citizenship if the law on personal assistance is interpreted in a more restrictive way. Worth noting is that these claims are not only about the recognition of disabled people as valuable citizens; they also seek recognition that the inequalities and discrimination faced by disabled people require political action. The bloggers assert that it is particularly unfair to compromise personal assistance, a measure that is crucial for participation in society, on the ground that it is costly. While some blogposts contend that it is worth investing in personal assistance because it enables disabled people to be productive citizens, others claim that the state should move away from a discussion about the costs of personal assistance and recognise instead the right of all citizens to participate fully in society. As such, they move the discussion about personal assistance from a question of redistribution to a question of recognition.

Next to claiming equal opportunities, the bloggers ask for actual participation in society. Indeed, the bloggers do not consider that equal opportunities suffice but argue that equal outcomes are crucial for guaranteeing full citizenship (Rioux and Valentine 2006). They argue that actual participation serves to challenge cultural prejudices and show that disabled people are ordinary citizens, but deplore the lack of visibility of disabled people in the media:

How much space does disability get in the news? 0,7 per mil in SVT [Swedish national public TV broadcaster] according to a research report from 2006. (From the blog ‘Full Participation.Now’)

When shall we see a host with an impairment in an ‘ordinary’ TV-show? (From the blog ‘Full Participation.Now’)

In claiming actual participation, the bloggers are confronted with the ‘difference dilemma’ (Minow 1985), which can be noticed by the fact that the blog includes various conceptions of disability. While some bloggers stress that disabled people are similar to other citizens and argue that everyone can experience disability at some point in life, other blogposts stress the differences relative to having an impairment and pose that these should be viewed as part of human diversity. Both conceptions can be found in the same blogpost, as illustrated by the following blog excerpt:

I dedicate my life to a kind of struggle. A struggle for: that we with various types of impairment shall realise that we belong to a natural diversity, that we do not have any defects, that we can live the life we want to live, that we shall be able to function in society like anyone else. That there is in fact no difference between us and others, but that we have a collective experience, a common history that has not been written down, but that needs to be told. (From the blog ‘Full Participation.Now’)

In sum, the bloggers claim the conditions for participation as well as visible participation by emphasising a logic of ‘full citizenship’, rather than active citizenship, and arguing that disabled people are equal members of society. As such, the bloggers claim recognition, and the analysis suggests that their claims are underpinned by a tension between equality and difference.

A question of equality: denouncing injustice and asking for recognition

Next to participation, equality is an important concern of the bloggers. Claims for equality are expressed in two different ways: in terms of equal rights for all citizens and in terms of respect for the law. Many blogposts contain references to different types of legislations (see Table 2), upon which the bloggers draw to inform about the formal rights of disabled people and point out cases where the law is violated.

Table 2. Laws mentioned in the blogposts.

Law	n	% (N = 323)
Act Concerning Support and Service for Persons with Certain Functional Impairments (SFS 1993:387)	80	25
Discrimination Act (SFS 2008:567)	73	23
Planning and Building Act (SFS 2010:900)	16	5
Public Transportation Act (SFS 2010:1065)	11	3
Americans with Disabilities Act (ADA 1990)	9	3
Other	7	2

Table 2 shows that the legal references found in the blogposts reflect the two main topics discussed by the bloggers, namely accessibility and personal assistance. The bloggers claim that personal assistance should be recognised as a legal right and criticise the fact that this measure is often considered in terms of charity. As such, they contrast the design of welfare measures according to a ‘citizenship model’ with a ‘professional gift model’ (Duffy 2012):

The personal assistance reform is not a gift of grace. The assistance benefit is not a mite for a poor thing without means that a more successful and wealthy good-hearted person donates by the roadside, as it so often has been the case in the history of charity. The personal assistance reform is a right adopted by the Swedish parliament with the purpose of guaranteeing to people with severe impairments the possibility to live like others. A true citizenship. (From the blog ‘Full Participation.Now’)

As illustrated by this excerpt, the bloggers demand the recognition of disabled people’s citizenship by referring to existing legislations. In so doing, they position disabled people as rights holders. However, the fact that the bloggers feel the need to establish the citizenship status of disabled people more firmly, which is a recurrent theme in the blog, can be interpreted as an indication that they do not feel recognised as citizens in society. As mentioned previously, the bloggers criticise the fact that the right to personal assistance is continuously questioned because of its costs and argue that disabled people are being treated unfairly. To make this point, a blogger ironically suggests that the basic needs of politicians should be assessed according to the same criteria used to assess the needs of personal assistance users. At the time of writing the blogpost, the Swedish Social Security Agency had announced that assessment criteria would be applied in a more restrictive way.

If savings need to be made, why not do it in the context of politics? Should the Swedish Social Security Agency not also review the basic needs of our politicians? I personally think that a series of efficiency measures can be implemented. […] Take for example going to the toilet. Should we, taxpayers, need to pay for the time that politicians spend on the toilet? Absolutely not! A proper time evaluation should be conducted and be used to define how much [money] should be deduced from their wages. (From the blog ‘Full Participation.Now’)

By highlighting that politicians also have basic needs, this blogger challenges the taken-for-granted idea that disabled people have special needs and positions them as ordinary citizens. Moreover, by demonstrating that the politicians’ bodily needs also come with a cost, the blogger challenges the representation that the needs of disabled people are exceptionally costly. This argument builds upon the tension between universalism and particularity and, in this case, between abstract and embodied citizenship. It stresses the embodied reality of citizenship, which is common to both politicians and disabled people, to make the case that disabled people are treated as second-class citizens. Hence, the blogger highlights a situation of injustice and justifies the redistribution of resources to finance personal assistance in terms of equality of treatment. The blogpost claims recognition for disabled people as equal citizens deserving equal treatment.

Next to personal assistance, the bloggers draw upon legal rights to argue that accessibility is a question of equality and, consequentially, that inaccessibility is a form of injustice. They inform that public places and public transport should take into account the needs of disabled people, as stipulated by the Planning and Building Act (SFS 2010:900) and by the Public Transportation Act (SFS 2010:1065). At the same time, the bloggers point out that the laws are violated and testify that disabled people often encounter barriers related to accessibility. To secure their rights and enable people to fight for their rights in court, they argue that the Swedish Discrimination Act (SFS 2008:567) should be amended to include accessibility as a ground for discrimination. Making a parallel with disability rights activism in the United States, some bloggers claim that the Americans with Disabilities Act (ADA 1990) has made American society much more accessible and that Sweden should adopt a similar anti-discrimination law.

As for the issue of personal assistance, the bloggers formulate the claim for accessibility both in terms of equality before the law and as a question of being considered as a citizen on an equal basis with others – that is, a question of recognition:

My demand that the society in which I live and work shall function although I have a mobility impairment has nothing to do with feelings, it has to do with rights. I certainly experience a feeling of being offended when I am daily excluded from settings because it is physically impossible for me to participate. Not because of my mobility impairment, but because I do not access a room or a bus or train. The feeling of being offended has not to do with the fact that I am sad or hurt, but because I am not taken into account, because I am not recognised as a citizen who has the same right to live life to the fullest in the society we call ours. (From the blog ‘Full Participation.Now’)

The blogger spells out that she experiences the lack of accessibility as an offence because it shows that she is not considered to be part of society. Accessibility is a question of belonging and the lack of access is experienced as second-class citizenship.

In sum, the bloggers seek recognition for disabled people as full citizens by drawing upon various pieces of legislation and contesting the idea that disabled people have special needs. In addition, they claim recognition for the various forms of injustice suffered by disabled people by demonstrating that disabled people experience second-class citizenship because their rights are violated and their membership in society is not recognised. These claims are also about redistribution as the bloggers challenge existent justifications for the diminished redistribution (i.e. welfare cuts) regarding personal assistance. Overall, the bloggers claim equality by demanding that the legislation is implemented and that disabled people are recognised as full citizens and an inherent part of society. It follows that, while the question of redistribution is present in the blog, the claims for recognition are prominent in the blogger’s arguments.

A political question: making the state accountable and engaging as citizens

Since the blog ‘Full Participation.Now’ was created with the aim of shedding light on the issue of disability during the election campaign, it is not surprising that it generally presents disability as a political question. The analysis suggests that, in addition to references to the legislation (see Table 2), the bloggers seek to hold the state accountable for the rights of its citizens with disabilities by drawing upon various types of public documents (see Table 3).

Table 3. Public documents mentioned in the blogposts.

Public documents	n	% (N = 323)
Report of public enquiry	62	19
UN Convention on the Rights of Persons with Disabilities	40	12
From Patient to Citizen – A National Plan of Action for Disability Politics	26	8
Court decisions	25	8

Overall, the bloggers seem to have an ambivalent relationship to the state, which they both trust and mistrust. They trust that the Swedish politicians and public authorities can make positive changes for enabling disabled people to participate in society. However, they are angry and worried that politicians will not hold their promise to recognise disabled people as full citizens:

The legal uncertainty for us who have been granted personal assistance appears greater today. Even the completely paralyzed [person] needs to prove that her basic needs are important enough. About minimum three hours a day in average. And with this prevailing anarchy in the needs assessment, where some case officers apply austerity measures without prior parliament decision, the outcome can go either way. These are the realities in May 2010. What now happens lays in the hands of the parliament. (From the blog ‘Full Participation.Now’)

One reason regularly mentioned by the bloggers is that politicians consider disability as a minority issue to be solved with special treatments. Instead, they argue that disability concerns many people and highlight that this matters in the context of elections:

It is time that you politicians understand that we are MANY and that you must ensure that you merit our votes. (From the blog ‘Full Participation.Now’)

In order to make the politicians accountable, the bloggers refer to public inquiries about the situation of disabled people. These inquiries were commissioned by the state and show, for example, that disabled people are worse off in a series of domains compared to persons without disabilities (Swedish National Board of Health and Welfare 2010) and that accessibility should be considered a ground for discrimination (Government Offices of Sweden 2010). As such, the bloggers do not present new information but pressure the politicians to take action by referring to the results of public inquiries, which were commissioned by the government itself. Moreover, the blogposts refer to the national strategy for disability politics and to the CRPD, both to remind politicians of their engagements to make disabled people full citizens and to blame them for not putting these words into practice.

However, bloggers also express distrust towards the politicians as change is slow to happen and they do not seem confident that the state institutions will guarantee their social rights. They point out that the Swedish Social Insurance Agency restricts eligibility criteria for personal assistance and that these restrictions are legitimised by court decisions. Regarding the latter, the blog informs about and criticises recent court decisions that led to a decrease in personal assistance for some users. Some bloggers therefore propose alternative ways to improve the participation of disabled people in society. They suggest that citizens should engage as individual citizens by reporting cases of discrimination, pointing out that some buildings are not accessible, explaining about the experience of living with impairment, using their power as customers and participating in demonstrations:

All those who believe that inaccessibility is discrimination need to show this by being visible and heard on the streets and squares all around the country tomorrow. Show where you stand and join the March for accessibility. (From the blog ‘Full Participation.Now’)

Report discrimination … In order to push the statistics in the right direction, you can examine your near environment today when you go to/return from your work or when you go to the shop […]. Reporting is easy, quick and free and you can feel the satisfaction of having performed a good action to make Sweden more accessible. (From the blog ‘Full Participation.Now’)

As suggested by these excerpts, the bloggers seek to persuade their fellow citizens to engage both collectively and individually for the rights of disabled people. Moreover, various bloggers propose using anti-discrimination laws as a tool to claim rights in justice. In order to facilitate this process, they claim that the Swedish Discrimination Act (SFS 2008:567) should be amended to include accessibility as a ground for discrimination and that the legislation regulating personal assistance (SFS 1993:387) should be amended to specify the interpretation of ‘basic needs’. The bloggers argue that this latter amendment would secure that the law is interpreted according to the legislators’ original intention to provide conditions for disabled people to participate in society. As such, they aim to reverse the trend of a stricter interpretation of the law limiting the number of personal assistance recipients. Some bloggers add that the disability rights movement should have specialised lawyers and gather resources to enable persons who have been discriminated to file a case in court:

Using the law as an instrument to prevent discrimination and improve society implies an understanding of the legal process, its possibilities and limitations, and above all of the role that jurisprudence plays in jurisdiction. Being able to wave with some legal paragraphs does not suffice. (From the blog ‘Full Participation.Now’)

Apart from fostering individual citizenship actions, various bloggers point out that the disability rights movement should be more proactive instead of following the political agenda. They argue that the disability rights movement should come up with its own agenda and rethink the way it engages in politics:

One of the most important and most difficult question we have in front of us is: How can we make ‘our questions’ politically sexy? Should we plea the politicians’ goodwill – or should we take another slightly revolutionary approach? (From the blog ‘Full Participation.Now’)

In sum, the bloggers aim to put disability on the political agenda and pressure politicians to respect their engagements, take the evidence gathered by public inquiries into account and protect the rights of disabled people. However, they do not trust that the politicians and the welfare state agencies will do enough to protect their rights and therefore seek to find alternative ways to fight for the citizenship rights of disabled people through anti-discrimination legislation and collective action.

Concluding discussion

This article analysed the claims expressed by Swedish disability rights activists on the blog ‘Full Participation.Now’. Drawing upon citizenship research, the article pointed to the tensions and dilemmas featuring the bloggers’ demand for participation and equality, and observed that these claims were mostly framed in terms of recognition. It is worth noting that the blog afforded the expression of a variety of claims because most blogposts were written individually by a variety of Swedish disability rights activists. As such, these empirical data proved to be particularly well suited to study the tensions and dilemmas underpinning disability rights activism.

The bloggers claimed recognition for the equality of disabled people as full citizens, as well as recognition for the injustices and the situation of second-class citizenship they experience. The bloggers did this by documenting the formal rights of disabled people and shedding light upon situations of injustice and unequal treatment. These arguments included challenging exclusionary discourses of citizenship based on the ‘professional gift model’ (Duffy 2012) and countering images of disabled people as unvalued citizens with special needs (Meekosha and Dowse 1997). The analysis directed attention to the dilemmas relative to claiming disability measures while maintaining equality of status. Overall, I argue that the bloggers’ claims can be interpreted in terms of ‘insurgent citizenship’ (Holston 2008) as the activists showed a great awareness of the citizenship rights of disabled people and mobilised to obtain their rights in practice.

However, the tensions and dilemmas inherent to the ‘insurgent citizenship’ practised on the blog ‘Full Participation.Now’ should not overshadow the fact that the bloggers aspire to the same goal of full citizenship for disabled people. Indeed, the analysis shows that, although they emphasise different aspects, the blogposts share a common claim for full citizenship understood in terms of social justice based on equality. Thus, rather than being a sign that the movement is fragmented, these particular tensions and dilemmas indicate that disability rights activism is a ‘bivalent’ struggle (Dodd 2016; Fraser 1995). It is a bivalent struggle because disabled people need both redistribution and recognition in order to be able to participate in society on an equal basis with others. Yet it appeared that the bloggers place more emphasis on recognition claims than on redistribution claims. A parallel can be made to contemporary disability studies. Commenting upon the state of this field of research, Dodd (2016) argued that disability studies should pay greater attention to political economy and marketisation; that is, to issues of redistribution. Similarly, based on the analysis of the blog ‘Full Participation.Now’, I suggest that disability rights activists should put greater emphasis on redistribution claims. While recognition claims are crucial to establish disabled people as equal citizens, these should not downplay the importance of redistribution. Developing arguments to strengthen redistribution claims might be especially important to counter the Swedish government’s framing of disability benefits in terms of costs (Altermark 2017a).

Apart from being relevant to citizenship and disability scholars, analysing the claims of disability rights activists can be useful for the activists themselves. This article highlighted that the disability rights activists aimed to bring the issue of disablement to the attention of politicians and pressure them to take action urgently. Yet the bloggers also pointed to the challenges relative to making full citizenship a reality for disabled people in contemporary Sweden, in a context where de facto second-class citizenship co-exists with legal and political declarations about the rights of disabled people. The bloggers argued that the injustices faced by disabled people are invisible and not considered important political problems. Therefore, the bloggers argued that individual citizens and the disability rights movement should renew their strategies to claim full citizenship for disabled people. I suggest that a nuanced analysis of the dilemmas and tensions inherent to the citizenship struggle of disabled people and of the way these are played out in reality can help find new ways to claim full citizenship, now.

Disclosure statement

No potential conflict of interest was reported by the author.

Acknowledgments

The author thanks Prof. Rafael Lindqvist and Prof. Sandra Torres at the Sociology Department of Uppsala University as well as the two anonymous reviewers for their constructive suggestions on earlier versions of this article.

Notes

1. Original Swedish title: ‘Full Delaktighet.Nu’.

2. A total of 63,000 Swedes were sterilised in the period between 1935 and 1975 (Broberg and Roll-Hansen 2005).

3. This demand was part of the demands of the larger disability movement in Sweden and is reflected in the claims of the blog ‘Full Participation.Now’.

4. The last blogpost of 2015 thanks all those who participated in the blog and explains that the blog is put on hold but that disability rights activism needs to continue. An additional blogpost was posted in 2016. This blogpost was excluded from the analysis because it has a different character – it explains that the notion of ‘Full Participation.Now’ is being used in various settings and that these views are not necessarily supported by the bloggers.