SP1-Cooperation, Social Sciences and Humanities (SSH) Collaborative project – small or medium-scale focused research project FP7-SSH2012-2 - SSH.2012.3.2-2 Grant Agreement Number 320079 Project start date: 01 February 2013 Project duration: 36 months

DISCIT

Making Persons with Disabilities Full Citizens – New Knowledge for an Inclusive and Sustainable European Social Model

Deliverable 9.2 (D9.2)

The Internationalisation of Disability Politics – The New Opportunity Structures created by the UN CRPD

Deliverable 9.2 due date: 31 January 2015 Submission date: Dissemination level: PU (Public) Nature: R (Report) Work Package Number and Title: WP9 – Active Citizenship as Political

Participation Work Package Leader: Anne Waldschmidt, University of Cologne,

Germany, Beneficiary number 2 Contact person: Anne Waldschmidt,

anne.waldschmidt@uni-koeln.de Project URL: www.discit.eu

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The Internationalisation of Disability Politics – The New Opportunity Structures created by the UN

CRPD

ABSTRACT

This paper explores the Internationalisation of disability politics in the light of the Convention on the Rights of Persons with Disabilities (CRPD) as a new opportunity structure. The (collective) political participation of persons with disabilities is an integral feature of exercising as well as achieving Active Citizenship. As research on disability rights activism at the European level is lacking, this paper aims to provide knowledge that is useful to identify factors enabling or constraining opportunities for full participation. Based on the approach of the structuration theory we divide our analysis in two parts, the level of structures and the level of practices. The research was guided by a theoretical framework. For the level of structures we applied the theory of political and legal opportunity structures to capture the external (societal) structures. According to the framework developed in our previous Deliverable 9.1, we further drew upon the resource mobilisation approach to account for the internal (organisational) structures. Furthermore, we developed a concept of Internationalisation in order to trace recent developments in disability politics. The empirical data for the analysis consisted of semi-structured expert interviews with members of European Disabled People’s Organisations on the one hand and additional desk research based on internet resources and publicly available documents on the other hand. The analysis of structures and practices brought to the fore that DPOs use European opportunity structures to varying degrees partly depending on their organisational structures. We further could show that there are effects of Internationalisation present at the European level that affect the practices of DPOs.

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Contents: 1. Introduction – The Internationalisation of Disability Politics and Its Relevance for

Disability Rights Activism ..................................................................................................... 5

2. State of the Research on the Internationalisation of Disability Politics and European Disability Rights Activism ..................................................................................................... 8

3. A Preliminary Taxonomy of Disability Rights Activism .................................................. 10

4. Theoretical Assumptions ..................................................................................................... 13

4.1. Structuration Theory ................................................................................................... 14

4.2. The Level of Structures: Opportunity and Organisational Structures ......................... 15

4.3. The Level of Practices: Activities, Issues and Strategies ............................................ 18

4.4. Developing a Concept of Internationalisation ............................................................ 21

4.5. Conclusions ................................................................................................................. 28

5. Own Methodology, Methods and Data Collection ............................................................ 28

5.1. Developing a Sample of Supra-National DPOs .......................................................... 30

5.2. Preparing a Topic Guide and Additional Documents for Expert Interviews .............. 32

5.3. Recruiting Representatives of Supra-National DPOs ................................................. 34

5.4. Conducted Expert Interviews and Data Editing .......................................................... 34

6. Empirical Analysis ............................................................................................................... 36

6.1. Opportunity Structures for European Disability Rights Activism at the European Level .................................................................................................................................... 36

6.1.1. The European Union .................................................................................................. 37

6.1.2. The Council of Europe ............................................................................................... 42

6.1.3. Conclusions ............................................................................................................... 43

6.2. Organisational Structures of European DPOs ............................................................. 44

6.2.1. General Information: Target Group, Legal Status and Year of Foundation .............. 45

6.2.2. Financial Resources ................................................................................................... 46

6.2.3. Collaboration in EU Level Advocacy Coalitions....................................................... 49

6.2.4. Conclusions ............................................................................................................... 51

6.3. Practices of European DPOs ....................................................................................... 53

6.3.1. European DPOs’ Issues ............................................................................................. 53

6.3.2. European DPOs’ Activities ........................................................................................ 58

6.3.3. European DPOs’ Strategies ....................................................................................... 65

6.3.4. Conclusions ............................................................................................................... 67

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6.4. The Impact and Implementation of the CRPD from the Perspective of Organisations .................................................................................................................................... 68

7. Conclusions ........................................................................................................................... 72

8. List of Tables ........................................................................................................................ 75

9. List of Figures ...................................................................................................................... 75

10. References ............................................................................................................................. 75

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1. Introduction – The Internationalisation of Disability Politics and Its Relevance for Disability Rights Activism

This following paper is the second working paper of Work Package 9 of the DISCIT research consortium1. The overall aim of Work Package 9 is to analyse and compare patterns of disability rights activism with reference to the concept of Active Citizenship as well as to review legal and institutional frameworks for collective political participation of persons with disabilities, both at the national and supra-national levels. By studying the collective political participation of persons with disabilities through the opportunities for and practices of disabled people’s organisations (DPOs), Work Package 9 intends to contribute to the clarification of the conditions which enable persons with disabilities to become Active Citizens in Europe.

While this working paper focuses at the European level of disability politics and disability rights activism, it fundamentally is directed towards creating new knowledge to ensure the full and effective participation of persons with disabilities. Of the three dimensions – (social) security, (personal) autonomy and (political) influence – of the concept of Active Citizenship, it is the latter dimension of political influence which is of particular interest for this study. Political influence does not only concern individual political participation (for instance voting, being active in a political party or standing for elections). Instead, the concept of Active Citizenship takes into account the role of civil society and its organisations for the full and effective participation of persons with disabilities. As outlined in Deliverable 2.1 (Waldschmidt, 2013, p. 57ff), the three dimensions of Active Citizenship are mutually interrelated and interdependent. For the dimension of political influence, it can be said that only when a person does not have to fear existential life risks such as poverty, and when personal autonomy is guaranteed, the person has good chances to full participation and political influence in society. Vice versa, collective political participation of persons with disabilities in organisations to promote the rights of persons with disabilities is the result and practice of Active Citizenship.

The very fact that persons with disabilities form organisations to represent their interests at local, regional, national and supra-national levels is telling about the significance of precisely these organisations for full participation and active agency of the individual. DPOs’ efforts to improve the situation of persons with disabilities in Europe are directly linked to opportunities for participation and equality in society in a wider sense. Further, this implies that practices of

1 The first working paper of DISCIT Work Package 9 was published in 2013 under the title “A Comparative Analysis of Disability Rights Activism – with reference to the concept of Active Citizenship” (Waldschmidt, Karačić, Sturm, & Dins, 2013)

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DPOs to a certain degree mirror the participatory opportunities and barriers persons with disabilities are confronted with in European countries, as these experiences are transformed into political agendas. Even more, the conditions for DPOs’ effective work towards the common good of ensuring human rights as well as the practices of DPOs are crucial indicators for individual persons’ opportunities to exercise Active Citizenship.

With regard to our research perspective, the aim of this Work Package is based on the United Nations Convention on the Rights of Persons with Disabilities (CRPD), and directly linked to Article 29, CRPD. As this Article is fairly complex, we stress the significance of Section b) which is our main point of reference when we deal with collective political participation of persons with disabilities. This section highlights the full participation of persons with disabilities as exercised by DPOs at all political levels, and the significance of an appropriate environment to be promoted in this context:

Article 29 - Participation in political and public life

“States Parties shall guarantee to persons with disabilities political rights and the opportunity to enjoy them on an equal basis with others, and shall undertake: […]

(b) To promote actively an environment in which persons with disabilities can effectively and fully participate in the conduct of public affairs, without discrimination and on an equal basis with others, and encourage their participation in public affairs, including:

(i) Participation in non-governmental organizations and associations concerned with the public and political life of the country, and in the activities and administration of political parties;

(ii) Forming and joining organizations of persons with disabilities to represent persons with disabilities at international, national, regional and local levels.”(United Nations General Assembly, 2006)

In our first working paper Deliverable 9.1, our research focus was on established structures, practices and patterns of political participation and representation for and of persons with disabilities on the basis of a comprehensive literature review and national reports of the nine countries participating in DISCIT (Germany, Italy, the United Kingdom, Ireland, Norway, Sweden, the Czech Republic, Serbia and Switzerland). On this data basis, we conducted a cross-national comparison of structures, practices and patterns of disability rights activism with reference to the concept of Active Citizenship. In conclusion, we can say that the variety of structures and practices showed great variance among the selected countries, while the actual extent and way of involvement of national DPOs in the implementation of the CRPD at country level is an open question that will be investigated in our third working paper.

Ideally, the CRPD is to be effectively implemented at all political levels to make sure that it has impact not only on disability politics and disability activism, but also on the everyday lives

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of persons with disabilities. While one could argue that effective implementation of the CPRD is most crucial at national, regional and local levels, there have been major steps during the last decades in establishing a variety of international stakeholders such as supra-national organisations of and for persons with disabilities. In the turn of this paper we will specify to which extent we understand this trend as Internationalisation of disability politics.

For this working paper Deliverable 9.2, we will investigate the use of the new international opportunity structures with reference to the CRPD to foster change in disability politics. We perceive the CRPD as a new opportunity structure for various stakeholders to evoke major transformations in disability politics, having the potential of being a true milestone for all political levels. Obviously, the CRPD is not only legally binding (if ratified) at the national level and also for the European Union, it can moreover be seen as a supra-national opportunity structure for European and international stakeholders to formulate claims and strategically pursue political change in disability politics. We suppose that these stakeholders can relate to the CRPD Articles through their activities, that means for example through campaigns or by legal action. Thus, if our assumptions turn out to be true, the CRPD would function as a point of reference for DPOs as well as for other organisations at national as well as supra-national levels, and thus this convention has normative value. While the different political levels are interlinked, we assume that at the level of the European Union as well as at the European level in a very broad sense, the (opportunity) structures for, organisational structures of and practices of European DPOs might considerably differ from structures and practices at the national level. By analysing the structures available for supra-national DPOs, by reviewing their organisational structures and practices, we hope to obtain insights that will help us to understand the practices of supra-national stakeholders and to create new knowledge about disability rights activism – specifically at the European level – but also in general. Further, we aim at gaining insights into the effects and the impact the CRPD has had on disability politics at the European level so far.

To obtain relevant information on these issues, next to a literature review we conducted semi-structured interviews with international experts on the new opportunity structures opened up internationally by the CRPD and we also conducted desk research based on internet resources and other publicly available documents aiming to map the European level of disability politics. Thus, we assess the significance of the international opportunity structure CRPD for the context of the European opportunity structures as well as for the practices of supra-national organisations’ practices for change in disability politics. In the course of this study, we will develop notions on the question if and to what extent there has been an Internationalisation of disability politics and which has been the role of the CRPD in this respect.

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In the following, we will present the current state of the research on the Internationalisation of disability politics and European disability rights activism in order to identify key perspectives and knowledge that will help us to specify our theoretical and methodological approach.

2. State of the Research on the Internationalisation of Disability Politics and European Disability Rights Activism

To contextualise our study on the Internationalisation of disability politics and European disability rights activism, we first would like to provide an overview of central discussions in the academic literature. The topic of the Internalisation of disability politics is a research field that has not yet been explored widely. Most of the academic literature that deals with related topics focuses on the Europeanisation of disability policies. Therefore, in the first place we will summarise the discussions in this field and subsequently elaborate on the topic of Internationalisation of disability politics of which disability rights activism is a part.

First, we can observe a discussion on the Europeanisation of disability policies which is guided by the question whether or not we can observe a convergence of disability policies. Convergence, according to Hvinden (2003, p. 609), can refer to the harmonisation of different aspects, such as “constraints and conditions for policy-making”, “policy objectives”, “policy instruments”, “outputs” and “outcomes”. Hvinden (Hvinden, 2003, p. 610f) points to the fact that one should differentiate between so-called “crowded” vs. “vacant” areas of disability policy. His assumption is that change and convergence is more likely in so-called vacant areas of disability policy which are not as path-dependent as the crowded areas with already existing and well-established policies.

While this hypothesis offers an interesting explanation for developments at the European level and is particularly based on the structure and competences of the European Union as well as its member states, these developments may also be reflected at a global level.

The changes in disability policies at the European level have also been investigated by Waldschmidt (2009). The comparison of disability policies between 1958 and 2005 reveals two divergent forms of disability policy: one, that is ascribed to the ‘traditional social policy’ measures including in particular social protection and labour market integration and the other which is classified as ‘new policy’ with its core of non-discrimination policy. This shift in disability policy is paralleled by Waldschmidt with general developments in the social policy area of the EU. First assumptions of possible impacts of global processes are indicated when European social policy gets “impulses by global disability policy” in the 1980s (Waldschmidt, 2009, p. 18). This decade was of particular importance at the global level as several programmes by the UN (such as in 1982 the World Programme of Action Concerning Disabled

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Persons or from 1983 to 1992 the Decade of Disabled Persons) were initiated by that time (confer Table 1).

Another author that sheds more light on the impact of global processes is Priestley (2007). He argues that “[t]he most significant policy catalysts are now at the global level while most significant implementation constraints are at the national level” (Priestley, 2007, p. 61). As his article was published in 2007, he was able to already take into consideration the possible impact of the CRPD although it had not yet been ratified by the EU. Priestley, as well as Waldschmidt (2009), notes a shift in disability policy at the European level “from compensatory to rights-based policy in Europe” (Priestley, 2007, p. 70) and relates this process more explicitly to “the development of rights-based approaches elsewhere in the world” (ibid.). Priestley further highlights the role of the European Union as well as of EDF in the process of creating the CRPD.

It can be noted that the academic literature primarily deals with the topic of Europeanisation of disability policies whereas our research focus lies in the Internationalisation of disability politics. However, within the academic field disability rights activism, as part of the disability politics, is usually discussed in its national frame. Therefore, we will broaden our perspective to civil society in general to take up some insights on the relation between the European Union and its civil society. Due to the fact that our research focus lies at the European level we assume that although most of the research done in this field does not refer to disability rights activism, nevertheless, the discussion about interest representation, collective action or pressure groups may provide us with important knowledge for disability rights activism as well. Hereafter, we will outline some insights on the role of civil society in the European Union.

Research on the relation between the European Union and its civil society is abundant. One striking feature which is discussed by several authors is the role of the civil society or collective stakeholders. Müller, referring to Tocqueville, differentiates between four functional dimensions of civil society: “defensive, legitimising, participative, and integrative” (Müller, 2011, p. 163). These functions are said to compensate for different forms of crisis: the “crisis of politics”, i.e. “citizens’ disenchantment with politics”, the “crisis of representation”, i.e. the “elite dominance in decision-making” and the “crisis of the party system” (Boje & Potůček, 2011, p. 12f; Ruzza, 2004, p. 8). The involvement of civil society is said to render credibility and legitimacy to the political system, in our case the European Union which often lacks legitimacy. This is important to be kept in mind when we shed light on the involvement of DPOs at the European level.

While the European Union is known for its openness to lobbying and private interest groups, an increasing openness to the organised civil society is ascertained. This characteristic is often

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explained by particular structural features of some of the European institutions. Kohler-Koch comments on the specific importance of interest groups by highlighting that “[t]he Community organs, in particular the European Commission being responsible to initiate policy proposals, disposes of only limited resources and is therefore open to external expert advice” (Kohler-Koch, 1997, p. 2). This dependence on provision of information is widely cited when the relation between the European institutions and the civil society is discussed (Malleier, 2011; Marks & McAdam, 1999; Princen & Kerremans, 2008; Ruzza, 2004). With regard to the European Parliament, the emergence of the intergroups is highlighted as a channel for social interest groups to promote their objectives (Malleier, 2011, p. 103).

Tarrow also touches upon the relation between the European Union and non-state actors. He emphasizes the particular status of Europe by arguing “that European institutions have created a new venue for nonstate actors” (Tarrow, 2011, p. 247). As regards the international activists and advocates he states that “their organizations and repertoires of action are heavily conventional” and “they mainly focus on advocacy, education, lobbying, and service activities” (Tarrow, 2011, p. 239f).

Notwithstanding, there is little research done with regard to disability rights activism or disability-related interest groups at the European level which is our empirical focus. Malleier (2011) investigates the lobbying for disabled persons by using the European Disability Forum as a topic of research. He depicts various aspects and provides useful insights on the EDF but does not go far beyond that. Our empirical research in contrast aims at comparing different disability-related stakeholders and their role for the Internalisation of disability politics.

From this one can infer that DPOs at a European level may hold rather different positions and act differently than their national counterparts. Furthermore, we will have to consider the particular opportunity structures for the DPOs which are offered by European institutions as well as their peculiarities. We will enlarge upon this aspect in chapter 4.2 as well as in the empirical part of this paper.

However, before we present our theoretical assumptions which help us to specify our research interests, we need to clarify the terminology which we will apply. It is striking that in the literature a variety of terms is used to identify and categorise central stakeholders. This especially is the case when we try to apply these terms to the European level, as this level seems to require its own idiosyncrasy.

3. A Preliminary Taxonomy of Disability Rights Activism

This working paper investigates the relation of disability rights activism and disability politics at the European level. Before we set our theoretical framework to analyse structures, practices

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and outcomes, we need to reconsider the terminology that we applied for the national level as part of Deliverable 9.1 to concretise and revise it for the current study, also enriching it by insights gained in the recent research process.

In the following we will propose a preliminary taxonomy of disability rights activism and provide some further clarifications to the different forms of collective action we elaborated on in our previous working paper (Waldschmidt et al., 2013, p. 27ff). In our current understanding, disability rights activism comprises all efforts of advocating disability rights and interests as part of the organised civil society. Our understanding up to this point of research is that due to their histories, in many countries disability rights movements developed to some extent in parallel but to some degree also in opposition to conventional interest representation. When we refer to disability rights movements, we refer back to the definition as a collective actor that we provided in our first working paper (Waldschmidt et al., 2013, p. 31ff).

Though we are certain that this distinction is not valid in every case, in general we can say that conventional interest representation is associated less with social movements, as social movements rather make use of unconventional action such as public protests and demonstrations.

Forming organisations is typical of conventional interest representation, whereas the disability rights movements also established a variety of organisations during the last decades. While conventional interest representation relies mainly on the work of professional organisations, activists of the disability rights movement pool their forces through their own organisations such as self-help groups, centres or other initiatives. This means that organisations are not to be viewed as identical with the disability rights movement, but organisations are an integral part of social movements that have a stabilising function due to their effectiveness to pursue interests and achieve effective mobilisation (Rucht, 1994, p. 87).

Generally, we can say that DPOs are easier to analyse than other collective actors, as they usually have fixed organisational and membership structures, statutes, programmes and campaigns, often a specific legal status, a distinct idea whose interests they represent, and usually exist for relatively long time periods.

The organisations that emerged from the disability rights movements were in the beginning often so-called grassroots organisations. We assume that at the current stage organisations of persons with disabilities vary with regard to the degree of resources, membership structure and degree of division of labour, complexity of fixed organisational structures etc. For the European level, we presume that a majority of organisations, no matter if its history is rooted in disability rights movements or conventional interest representation, features a high degree of formalised structures, processes, defined memberships, etc.

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Because of the shared focus on advocating rights of persons with disabilities, both organisations of conventional interest representation as well as movement-based organisations have to be differentiated from paternalistic organisations which are more associated with welfare in the traditional sense of objectifying and implicitly controlling their clientele.

At the national levels, disability rights movements exercise power through mass mobilisation and direct action. At supra-national levels, we argue that certain forms of exercising power, for instance direct action, are probably less prominent than at the national, regional or local levels. In this context, Malleier argues with Marks/McAdam that at the European level “grass roots social movement organizations” are “adapt[ed] and transform[ed] […]” into “interest groups and lobbying-oriented organi[s]ations geared towards engaging political institutions” (Malleier, 2011, p. 40). This implies for our study that we need to raise the issue which collective stakeholders we expect to play an important role at the European level.

Hence, the effectiveness of interest representation can be enhanced by forming bigger associations. These bigger associations mean a concentration of resources and a condensation of DPOs. Therefore, these associations further enhance disability rights activism’s capacity to act and to exercise political influence. Even more, forming bigger associations of disability rights activism at the European level has to be understood as a reaction to the historical development of the European Union: Analogously to the growing importance of supra-national governance, DPOs also form supra-national organisations that represent the interests of persons with disabilities at the European and international levels. We will come back to this issue in detail when we develop our concept of Internationalisation (see below).

These supra-national DPOs might consider to join a disability-related umbrella organisation or a coalition together with other interest groups. Umbrella organisations comprise of DPOs which is why they have similar political objectives. Thus, they are more likely to achieve a common agenda with regard to several political issues. Coalitions, however, usually incorporate a variety of different stakeholders including, among others, providers of social services, medical practitioners, parents’ organisations, research institutions and organisations addressing other grounds of discrimination (e.g. gender, age, sexual orientation). Hence, these coalitions have to deal with persistent ideological disparities between its members ranging from (self-)advocacy organisations to service provider organisations. However, in spite of this pluralism, advocacy coalitions have proven to effectively advocate common goals (Cullen, 2010, p. 319). Furthermore, these coalitions have successfully managed to aggregate organisational and in particular financial resources from which member organisations with limited resources profit.

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In terms of organisational structures, these coalitions may be as formalised as its member organisations (with regard to long-term objectives, contractually binding statutes, etc.). However, whether or not the collaboration of its member organisations is formally stipulated, these coalitions may above all be defined as a “set of actors who share the same policy goal.” (Baumgartner et al., 2009, quoted in: Klüver, 2013, p. 54). In the context of this study, we want to focus on this specific pursuit of a common agenda rather than on the organisational structures of these coalitions. While Klüver labels these coalitions “lobbying coalitions” (Klüver, 2013), we favour the term advocacy coalition as used by (Ruzza, 2004, p. 14) since in our understanding, “lobbying” solely represents one of many manifestations of “advocacy” activities2.

In conclusion, we want to point out that when using the term disability rights activism we will refer to both, conventional interest representation and activities and initiatives of the disability rights movement. Accordingly, we will refer to disabled people’s organisations (DPOs) as organisations related to Disability Rights Activism as outlined in this chapter. Additionally, we want to stress the importance of the collaboration of DPOs in advocacy coalitions. Having thus clarified our object of research, we will subsequently elaborate on the pursued theoretical approach to study disability rights activism at the European level.

4. Theoretical Assumptions

In the following, we will present the theoretical framework which underlies this paper. After highlighting the relevance of structuration theory for this study, we will outline the theoretical approach on opportunity structures and organisational structures. Afterwards, we will discuss the implications for the level of practices which we will conceptualise as the dimensions of activities, issues and strategies. Drawing on this theoretical foundation, we will develop a concept of Internationalisation that will permit us to raise the question to what extent the international level of disability politics changes or influences the European level of disability politics. While there is no widely-accepted concept of Internationalisation of disability politics yet, we will refer to insights from the social movement literature as well as to the concept of Europeanisation to develop a concept of Internationalisation which can be linked to opportunity structures at the European level and to the CRPD as a relatively new international opportunity structure. This will set the focus of our research perspective on structures at the European level

2 Unfortunately for reasons of feasibility, we have to go without a more in-depth distinction of the concepts of “advocacy” and “lobbying”.

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with a special focus on the relatively new international opportunity structure CRPD and also on organisational structures of DPOs.

4.1. Structuration Theory

As we clarified in our working paper Deliverable 9.1 "A Comparative Analysis of Disability Rights Activism – with reference to the concept of Active Citizenship" (Waldschmidt et al., 2013, p. 39f), we draw on Hvinden’s and Halvorsen’s appropriation of Stones’ framework of structuration theory (Stones, 2005; Waldschmidt, 2013, p. 34ff), distinguishing between:

• External structures enabling or constraining persons with disabilities in achieving AC • Internal structures enabling or constraining persons with disabilities in achieving AC • Social practices (active agency) of relevance for persons with disabilities achieving AC • Outcomes of relevance for persons with disabilities achieving AC

The theoretical division between the dimensions of external and internal structures, practices and outcomes provides the DISCIT consortium with an analytical tool to identify enabling or constraining conditions regarding Active Citizenship of persons with disabilities. In addition, it makes possible to identify changes within these analytical dimensions.

Consequently, we used Hvinden’s and Halvorsen’s specification of dimensions for persons with disabilities achieving Active Citizenship to develop a framework that can be applied to collective political participation at the national and European levels and that is also consistent with our approach of structuration theory (Waldschmidt et al., 2013, p. 43f). For the level of collective political participation, this specification differentiates between structures, organisational structures, practices and outcomes Waldschmidt et al. (2013, p. 41).

Based on these notions we developed an integrated framework to analyse external structures for, organisational structures and practices of disability rights activism as well as outcomes. This approach can be used in order to identify enabling and constraining conditions for organisations that aim at realising full participation of persons with disabilities (for more details on this issue, see: (Waldschmidt et al., 2013, p. 18f).

According to the implied interdependence between structures, practices and outcomes, we can therefore study to what extent DPOs’ practices may lead to outcomes (changes) at the level of structures for (supra-national) organisations and for disability politics (at the European level). For the application of this approach, we further have to ask what we consider to be relevant with regard to structures for collective political participation, organisational structures of supra-national DPOs and practices of supra-national DPOs as well as possible outcomes.

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As concerns the dimension of outcomes that affect the level of structures, we may be able to identify changes in disability politics only with regard to the relevance of a possible CRPD impact at the European level – as this is implied by our focus on Internationalisation. However, our empirical data might also turn out to be fruitful to answer the question whether change could also be visible at the level of organisational structures and practices of supra-national DPOs.

Next, we will specify our theoretical assumptions for the levels of structures and practices, further developing a concept of Internationalisation of disability politics that helps to analyse the interconnections of the European and the international levels of disability politics with regard to structures and practices.

4.2. The Level of Structures: Opportunity and Organisational Structures

In accordance with our approach to structuration theory we will outline the theoretical assumptions which we apply to the level of structures in the following before we proceed with the level of practices. As we differentiate between external (societal) structures and internal (organisational) structures we will use different theoretical concepts in order to analyse the different levels. As regards the external structures we will concentrate on the theory of (political and legal) opportunity structures. For the internal structures we will just briefly outline some basic assumptions based on the resource mobilisation approach.

The academic discussion about the topic of collective action in general has elaborated on different aspects that influence or determine it. Questions which were raised in this context focus on diverging aspects. In D 9.1 we have given an overview of the existing theories on collective action which already have been applied to the context of disability rights activism (Waldschmidt et al., 2013, p. 34ff). In this paper we would like to focus on the political opportunity structures in particular as we think that this concept provides very useful insights on the Internationalisation of disability politics.

With regard to the concept of the political opportunity structures a complex of different aspects usually is considered. Marks and McAdam (1999, p. 99) take up four aspects which are to exert an influence on collective action. These aspects are meant to respond to two different questions. First, as regards the emergence of collective action: Why does collective action emerge at a certain moment in time? Second, what kind of outcomes does the collective action bring with it? According to the concept of the political opportunity structures, we can assume that the following four aspects affect these two issues of emergence and outcomes of collective action:

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• Openness or closure of the institutionalised political system • Stability or instability of elite alignments • Presence or absence of elites • State’s capacity or propensity for repression (Marks & McAdam, 1999, p. 99)

As we will not be able to cover all of the four dimensions our empirical research will be guided by the first dimension, i.e. the openness or closure of the institutionalised political system. According to our concept of structuration theory we are first and foremost interested in the structures and will therefore not cover the question on the relevance of elites as proposed in the second and third aspect within the theory of opportunity structures. The last aspect explicitly refers to the state and therefore also will not be taken into consideration as we focus at the European level.

Usually the concept of opportunity structures is used in the context of the national level. It is the state or its structure which facilitates or impedes collective action. As we concentrate our study at the European level, we will have to consider that there might be some differences compared to the national level.

Marks and McAdam (1996, 1999) as well as Princen and Kerremans (2008) take these disparities into account which come to the fore when we shift our focus to the European level. The European Union as a multi-level system offers distinct opportunities for influence. Marks and McAdam implicitly introduce a third dimension as they point out:

“[…] these groups do not act in Brussels as they do in their national contexts. Instead of demonstrating their grievances before the mass media, they lobby Commission officials, engage consultants to write impact reports, coordinate policy papers among themselves, instruct lawyers to pursue cases before the European Court of Justice, and, only on occasion, organize public protests outside the European Parliament building in Strasbourg.” (Marks & McAdam, 1999, p. 102)

Apart from the emergence and the outcomes of a collective action, this concept also enables us to investigate the form of collective action undertaken. As we mentioned before, the sharp distinction between social movements and interest groups blur if we consider collective action at the European level (Marks & McAdam, 1996, p. 251; Princen & Kerremans, 2008, p. 1130). Tarrow indicates that “[m]any of their activists come from social movement backgrounds and continue to think of themselves as movement activists, even as they lobby in the corridors of power” (Tarrow, 2011, p. 242).

Hitherto, we have only considered the political opportunity structures as an external factor that has effects on collective action but we have not reflected yet the “dialectic relationship between political opportunity and political action” (Princen & Kerremans, 2008, p. 1130). Princen and

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Kerremans, apart from the so-called ‘exogenous perspective’, also point to the ‘endogenous perspective’. The exogenous perspective reflects the influence which opportunity structures have on political action. In contrast, the endogenous perspective considers the political opportunity structures as an outcome of the influence which collective stakeholders have (2008, p. 1129).

This distinction highlights an interesting aspect, especially with regard to our underlying concept of structuration theory. We will not only try to take into account in how far structures exert influence on and partly determine collective action, but we also aim at understanding the influence of collective action on opportunity structures.

However, the influence of collective action on opportunity structures depends on the organisational structures of the stakeholder. As concerns the latter aspect, Princen and Kerremans, referring to Marks and McAdam (1996), point out that the question whether collective stakeholders make use of political opportunity structures or not is dependent on their organisational resources and capabilities, such as “money, expertise, legitimacy and (pre-) existing networks” (Princen & Kerremans, 2008, p. 1131). This aspect initially was introduced by the resource mobilisation approach (McCarty & Zald, 1977) which highlights the side of the internal, i.e. the organisational structures. Therefore, in our empirical research we will not only examine the opportunity structures at the European level but also the organisational structures as they may be regarded as interceding variable.

Furthermore, when Princen and Kerremans refer to political opportunity structures, they do not only include the classic concept of political opportunity structures but also take up other concepts which in their view implicitly also relate to opportunity structures. First, there is the concept of ‘resource exchange’ which refers to the fact that both stakeholders, the institutions as well as the collective stakeholders, benefit from the involvement (2008, p. 1134ff). This aspect might be of special interest when we shift our focus to the European level and have a closer look in how far the EU as well as the supra-national DPOs might benefit from mutual cooperation. Second, the authors refer to the so-called ‘venue shopping’ where the collective stakeholders choose the “institutional venue” of reference according to their aims (2008, p. 1136ff). This means, for example, that if the aims of a DPO are not compatible with conditions at a national level, the DPO might shift their focus to the European level. Third, Princen and Kerremans describe the ‘political construction of scale’. This concept links the concept of framing to the concept of political opportunity structures (2008, p. 1139ff). Framing a certain topic in a specific manner in order to justify it as, for example, a European topic might be used by a collective stakeholder to obtain access to certain opportunity structures.

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In D 9.1 we also took up the concept of ‘legal opportunity structures’ (Vanhala, 2011). Vanhala widens the concept of political opportunity structures by explicitly including the legal dimension which is often neglected. This concept seems to be very fruitful for our research, in particular as we focus on the CRPD. We regard the CRPD as a legal opportunity structure as it is a convention which is legally binding for all the contracting parties who have ratified it. A legal opportunity structure from our point of view can be regarded as part of the concept of political opportunity structures because the political system comprises of the following dimensions: legislative, executive and judiciary.

To summarise our approach, in this chapter we concentrated on the level of structures. Therefore, we differentiated between the external (societal) structures and the internal (organisational) structures. Our approach to examine the dimension of external structures will be guided by the theory of opportunity structures and within this framework especially by the question of the openness or closure of a political system, in our case the European institutions. This approach will be extended by investigating the impact of the CRPD under the perspective of the legal opportunity structure approach. For the level of internal structures we will make use of the resource mobilisation approach. In the following we will come back to the counterpart of the level of structures, that is the level of practices.

4.3. The Level of Practices: Activities, Issues and Strategies

Drawing on the theoretical framework we have presented above, we will now discuss its implications for the level of practices.

As we have elaborated earlier, we assume that structures and practices are interrelated. When we look at practices of supra-national DPOs, we need to bear in mind that European opportunity structures as well as organisational structures to a certain degree determine practices, while vice-versa practices have the potential to alter (European) opportunity structures.

In addition, we need to consider that it is very probable that the new international opportunity structure CRPD on the one hand has effects on (European) opportunity structures and on the other hand also on the level of practices. As our paper deals with the Internationalisation of disability politics at the European level, we also want to assess the actual impact of the CRPD on the practices of supra-national organisations.

In Deliverable 9.1, we defined the level of practices through the operationalisation into issues, activities and strategies. In the following, we will take up this approach by having a closer look at the practices through the lens of issues, activities and strategies. While issues and activities can be directly inferred by means of empirical data collection, we understand the level of

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strategies as an analytical category to qualify the actions of organisations, for instance with respect to political goals.

As regards issues, we assume that they vary among supra-national DPOs. For example, this might be due to organisations’ resources and organisational structures. Concerning the possible impact of the CRPD on issues of these organisations, from prior research we know that this convention is well-known among stakeholders of disability rights activism and also often referred to by various stakeholders at different political levels in one or the other way.

We infer from our theoretical approach that claims (thematic political goals) of supra-national organisations are either connected to Articles of the CPRD, related to the CRPD or touching upon other issues or topics. For the level of issues we can therefore assume that the organisations either make use of references to the CRPD in their claims or try to adapt their claims linguistically to the CPRD – also for example by referring to the human rights approach and Articles on specific rights issues, such as accessibility or political participation. The CRPD can be used as a framework that helps to spell out aspects of certain issues and as a means of emphasising legitimacy. Of course, it is also conceivable that organisations refrain from using the CRPD as a reference framework of any kind, but we suppose that most organisations will be able to elaborate on how they are using the CPRD to promote their goals.

When we try to infer implications for the level of activities, we have to be aware that our interpretation has to be sensitive to how supra-national organisations assess their opportunities to use the CPRD for their purposes. However, we need to bear in mind that organisations use all available structures at European level, no matter if these are CRPD-related or not. If the organisations estimate the CRPD as useful for their purposes, we can assume that activities are adjusted strategically in this respect. This means that DPOs employ those activities which promise the greatest impact in favour of the organisation’s goals. Therefore, using the CRPD as a point of reference may in some cases not be seen as useful. We can imagine that organisations in many cases rationally decide whether or not they make use of press campaigns or position papers, if they set up a meeting with a member of the European Parliament, etc. The activities are therefore shaped by experiences and expertise an organisation has within the political context. These experiences and expertise can be understood in terms of formal and informal opportunities for and also with regard to the interplay between political levels.

Referring back to our categorisation of strategies as outlined in Deliverable 9.1, we define strategies as “pragmatic guidelines to reach (political) goals by economically using the available resources” (Waldschmidt et al., 2013, p. 31). In the preceding working paper, we elaborated on the distinction between the four types of strategies of collaboration, cooperation, controversy or conflict that DPOs may apply to various extent. We assumed that the strategies

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express different degrees of consensus that the organisations have with other stakeholders such as governments, other organisations and coalitions, expert groups, businesses, mass media, scientific stakeholders etc. (ibid.). Other aspects, such as dependence on other stakeholders’ funding or different perceptions of how stabilising or destabilising certain claims are for the current political order (Hammerschmidt, 1992, p. 14f). For the analysis of strategies, we want to make the point that in our understanding strategies become concrete at the level of activities. In Deliverable 9.1 we already defined activities as “actual practice that is based on the respective strategies” and as “all actions usually directed towards or actually promoting a certain goal” (Waldschmidt et al., 2013, p. 32). For instance, lobbying members of parliaments is often understood as a political strategy, however, in our framework this is located within the dimension of activities. Thus, strategies rather resemble the underlying position and interaction (or lack thereof) of a stakeholder towards another stakeholder instead of a concrete action. Taking up the categories of collaboration, cooperation, controversy and conflict, we will have to consider their relevance and presumed occurrence at the European level.

In some cases, it might not be possible to trace strategies directly and unambiguously. Nevertheless, this categorisation of different strategies may provide knowledge on dominant strategies at the European level, on possible commonalities or on differences among practices of supra-national organisations.

Further, we have to bear in mind that strategies may not be inferred directly, unambiguously or at all in some cases. Nevertheless, we will keep our categorisation of different strategies in mind as an analytical tool to identify possible commonalities and differences among supra-national organisations.

In the preceding sections, we have presented our theoretical approach to address the dimensions of external structures, organisational structures, practices and outcomes with regard to disability rights activism at the European level. This approach features analytical dimensions that will make possible an (explorative) empirical analysis that reveals the complexity of disability rights activism, aiming at creating knowledge on the internationalisation of disability politics at the European level.

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Figure 1: Analytical Dimensions of Structuration Theory

4.4. Developing a Concept of Internationalisation

To understand the processes and effects of Internationalisation of disability politics, we first have to define the concept.

Unfortunately, most concepts of Internationalisation do not relate to the realm of political science, political sociology or policy analysis. Despite purely economic conceptualisations of Internationalisation, other concepts for instance relate to the Internationalisation of education or science (Altbach & Knight, 2007; European Science Foundation, 2012). Only very few attempts have been made to develop a general theory of political Internationalisation (see f. ex. (Bernstein & Cashore, 2000).

As a first step, to gain a preliminary understanding of Internationalisation we refer to Tarrow who defines Internationalisation as “not only increased ties between states, but increased vertical links among subnational, national, and international agents, along with an increased formal and informal structure that encourages the formation of ties between nonstate, state, and international actors” (2011, p. 246). Therefore, this definition centres on the idea that different kinds of stakeholders establish interconnections across various political levels. Similarly to our approach of applying structuration theory, he also stresses supra-national structures as a basis for the “ties“ that different political players establish and that provide “incentives“ and “constraints“ for “activism“ (Tarrow, 2011, p. 249).While this dichotomy of incentives and constraints in relation to activism can be used to analyse the degree of Internationalisation of a set of stakeholders (for example a social movement with its organisations), Tarrow also refers

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to regions of the world that feature different degrees of openness for participation to organisations and also to the diversity of groups which lead to varying opportunities to make use of these international interconnections (ibid.). With regard to the just mentioned aspect, the European Union can be described as a “new venue for nonstate actors” in which “Internationalization has gone farthest” (Tarrow, 2011, p. 247).

In line with Tarrow’s argument, we argue that Europe is an important “venue” for Internationalisation. To gain a deeper understanding what Internationalisation means with regard to the Europe, we make use of the prominent concept of Europeanisation that has proven to be useful when analysing the dynamics between the European level and the national political levels to complement it with the above-mentioned insights Tarrow provides for our study. Thus, making use of Radaellis’s approach to this common concept (Radaelli, 2003) enables us to formulate theoretical assumptions that help to investigate the dynamics between the international level of governance (in our case focusing on the CRPD) and the European level with regard to changes in disability politics.

As we also use the framework of structuration theory and the theory of opportunity structures as analytical tools, for this working paper we will refrain from using all the analytical and empirical dimensions associated with this concept, but use crucial notions to complement our approach.

Radaelli defines Europeanisation as “[p]rocesses of (a) construction, (b) diffusion, and (c) institutionalisation of formal and informal rules, procedures, policy paradigms, styles, ’ways of doing things’, and shared beliefs and norms which are first defined and consolidated in the making of EU public policy and politics and then incorporated in the logic of domestic discourse, identities, political structures, and public policies” (2003, p. 30). This concept stresses the “importance of change in the logic of political behaviour” (2003, p. 30). To be precise, this means that Radaelli wants to explore how the European level of governance and national levels are intertwined, as he mainly focuses on how one governance level shapes and changes the other governance level.

For our conception of Internationalisation we can infer that not only the European level and national levels of governance are intertwined but also the international level is interlinked with the European level. This is also implied by concepts such as multi-level governance or multilevel systems (Waldschmidt, 2009, p. 11). Moreover, this definition highlights that Internationalisation takes place not only with regard to one or few of the dimensions that we defined earlier, but that these processes of “construction”, “diffusion” and “institutionalisation” may in our terminology regard structures as well as outcomes. While in our study we are not interested in analytical distinctions between these types of processes, nevertheless, precisely

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the effects of these processes relate to the actual degree of the significance and impact of the CRPD at the European level, and we argue that the CRPD is not only a legally binding instrument, but an opportunity structure that at the European level potentially has impact on all processes listed above.

For our study of disability politics at the European level, the Internationalisation concept provides us with crucial insights concerning research questions as well as to what we might expect to find in the empirical material: First, the Internationalisation of disability politics addresses questions of how different governance levels influence or affect each other. Second, the concept implies a qualification of interactions between different governance levels with regard to whether there are top-down and/or bottom-up effects. Third, the actual effects of these processes of influence can be qualified as to whether or not significant changes occur. This has implications for the empirical focus and data collection. Further, changes of disability politics at different governance levels could be analysed to trace bottom-up or top-down effects also with regard to interactions between the international and other levels. It can be assumed that not only stakeholders at the European level and the CRPD, but also other international institutions, organisations and various opportunity structures are interacting with transnational stakeholders, governments or subgovernments, and are thus influencing and/or are being influenced by other stakeholders and levels of governance (Bernstein & Cashore, 2000, p. 31). However, for our study we limit the analysis to the top-down impact of the CPRD for the European context.

Having established our concept of Internationalisation, in the following table we present an overview of the most important steps in the Internationalisation of disability politics. This table is based on an extensive literature research (Albrecht, 2006; Barnes & Mercer, 2010; Driedger, 1989; Hurst, 2005; Malleier, 2011; Maschke, 2008; Priestley, 2007; Waldschmidt, 2009) and complemented by our additional research. To illustrate possible effects of Internationalisation we arranged the table by distinguishing on the one hand the global and the European level. Effects of top-down or bottom-up processes will become manifest in that way. Additionally, important steps in disability politics were listed alongside to the establishment of DPOs at the global and European level in order to demonstrate correlations between these processes.

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Table 1: Important Steps and Developments towards Internationalisation of Disability Politics and Disability Rights Activism

Year

Important steps towards Internalisation at a global level3

Important steps towards Internationalisation at the

European level

Establishment of International Organisations

and Alliances at a global level

Establishment of International Organisations and Alliances

at the European level 1922 Rehabilitation International4 1945 United Nations is founded 1948 UN: Universal Declaration of

Human Rights

1949 Council of Europe is founded 1950 CoE: European Convention on

Human Rights

1951 European Coal and Steel Community is established

World Federation of the Deaf

1953 Fédération International des Mutilés, des Invalides du Travail et des Invalides Civils

1957 European Economic Community is founded

1961 CoE: European Social Charter 1962 Inclusion International 1971 UN: Declaration on the Rights of

Mentally Retarded Persons

1972 First Center for Independent Living 1974 EU5: Resolution establishing the

Community Action Programme for the Vocational Rehabilitation of Handicapped Persons

People First European Alliance of Muscular Dystrophy Association

1975 UN: Declaration on the Rights of Disabled Persons

3 Referring to dates of adoption, not to entries into force. 4 Referring to the current official title of the organisations. 5 EU in this context also implies the predecessors of the European Union

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1979 International Federation of Spina Bifida and Hydrocephalus

Action Européenne des Personnes Handicapées

1980 WHO: ICIDH EU: Foundation of Disability Intergroup

1981 UN: International Year of Disabled Persons

Disabled Peoples’ International

1982 UN: World Programme of Action Concerning Disabled Persons Formation of the Society of Chronic Illness, Impairment and Disability (Disability Studies)

1983 –

1992

UN: Decade of Disabled Persons

1984 World Blind Union European Blind Union 1985 Mental Health Europe 1987 European Down Syndrome

Association 1988 EU: HELIOS I Inclusion Europe 1989 European Network on Independent

Living 1991 World Network of Users and

Survivors of Psychiatry European Network of (ex-) Users and Survivors of Psychiatry

1992 Disabled Peoples’ International Europe

1993 UN: Standard Rules on the Equalization of Opportunities for Persons with Disabilities

European Union is established (Maastricht Treaty) EU: HELIOS II EU: Disabled People’s Parliament (1st European Day of Disabled People)

1994 UNESCO: Salamanca Statement 1996

EU: Directive on Equal Opportunities

for Disabled People European Disability Forum

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1996 European Association of Service Providers for Persons with Disabilities

1997 EU: Treaty of Amsterdam 1998 Global Alliance of Mental

Illness Advocacy Network

1999 International Disability Alliance 2000 EU: Council Directive on

Employment Equality EU: Council Directive on Anti-Discrimination Legislation

2001 UN: Ad Hoc Committee drafting CRPD WHO: ICF

2003 EU: European Year of People with Disabilities

2005 European Coalition for Community Living

2006 UN: Adoption of the CRPD and the Optional Protocol

2007 EU: Creation of the Academic Network of European Disability Experts

2008 EU: Proposal for new Directive on Anti-Discrimination

2010 EU: Ratification of CRPD EU: European Disability Strategy 2010-2020

2011 EU: Disability Unit moves from DG Employment, Social Affairs and Inclusion to the DG Justice

2014 EU: Disability Unit moves back to DG Employment, Social Affairs and Inclusion

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With regard to possible interactions between the global and the European level, we can infer that for example the UN Standard Rules on the Equalisation of Opportunities (1993) had an impact at the European level with the first Disabled People’s Parliament (1993) taking place in the same year and the Equal Opportunity Directive (1996) being introduced some years later.

Regarding the interaction between the field of disability policy and disability rights activism, during the Decade of Disabled Persons (1983-1992) a large part of supra-national DPOs at the European level was established. Furthermore, the table illustrates that the majority of supra-national DPOs first was established at a global level before its equivalent establishment at the European level which again indicates processes of Internationalisation. Accordingly, DPI was established a decade prior to DPI Europe. The same is true for Inclusion International (1962) and Inclusion Europe (1988) with an even greater interval in between. However, some DPOs were founded at about the same time at a global and European level, such as WBU and EBU (both 1984) or WNUSP and ENUSP (both 1991).

As regards possible bottom-up processes one can expect that the foundation of Inclusion International, as an organisation representing persons with intellectual disabilities, had certain impact on the UN Declaration on the Rights of Mentally Retarded Persons which was launched about a decade after Inclusion International’s establishment. Furthermore, DPI’s establishment and its influence on the philosophy of the UN World Programme of Action Concerning Disabled Persons is not to be neglected as Driedger (1989, p. 97ff) outlines.

Taken as a whole, this illustrative presentation exemplifies on the hand processes of Internationalisation and on the other hand the interdependence between disability politics and disability rights activism.

While in our concept of Internationalisation we focus on top-down processes, we will take up the relevance of bottom-up effects in Deliverable 9.3 as we will shed light on the involvement of national DPOs in the implementation of the CRPD at national level.

Concluding, the concept of Internationalisation enriches the theoretical approaches of structuration theory and political opportunity structures to systematically study disability rights activism and disability politics at the European level. With this framework, we are able to pose research questions, such as:

• What is the impact of the international opportunity structure CPRD at the European level of disability politics?

• How does the Internationalisation of disability politics affect the issues, activities, and strategies of supra-national DPOs?

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4.5. Conclusions

In this section, we have elaborated on theoretical assumptions that help to specify our research focus. We have been able to present specifications on the analytical dimensions of disability rights activism based on structuration theory. To define the relevance of structures at the European and at the international level for our study, we make use of the theory of opportunity structures. In this context, we understand the organisational structures and resources of organisations as limiting or enabling factor for pursuing their goals. Further, we have theoretically specified the level of practices, drawing conclusions for the empirical analysis from our discussion of issues, activities and strategies. Lastly, we have developed a concept of Internationalisation of disability politics that enables us to analyse the impact of the CRPD as an international opportunity structure on the European level of disability politics.

Figure 2: Analytical Framework for the Analysis of European Disability Rights Activism

5. Own Methodology, Methods and Data Collection

In the preceding section we have developed a theoretical framework that can used to conduct an empirical analysis on the Internationalisation of disability politics and European disability rights activism. In accordance with structuration theory, we therefore developed an integrated framework that allows us to analyse the level of external structures that serve as opportunity structures for supra-national DPOs. Therefore, we have to consider the relevant opportunity structures at the European level. In addition, this will set the context to estimate the significance of and the degree to which the CRPD is an international opportunity structure that shapes disability politics and also disability rights activism at the European level. For this part of the empirical analysis, we mainly rely on scientific publications and publicly available information (including web resources).

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For the level of organisational structures, we have to specify what we consider as relevant information, so we appropriated our integrated framework as developed in Deliverable 9.1 for the European level (Waldschmidt et al., 2013, p. 43f). This set of questions (drawing on classic dimensions of organisational structures) aimed at mapping the respective target groups, the membership structures, the dimension of self-representation (for instance through asking for representation rates of certain social groups), the legal status, management structures, involvement in official politics, the relevance of service provision and other issues. For this information, we again identified publicly available information available on the Internet as most probable source of data collection.

For the level of practices, our concept differentiates between issues, activities, and strategies. As prior research revealed, at least some official documents of supra-national DPOs are available on publicly accessible websites, but especially for the analysis of organisational structures and practices we supposed that the available data might be too limited to provide for a meaningful analysis.

It is for this reason that the work programme for Task 9.2 of Work Package 9 includes expert interviews with representatives of supra-national DPOs as a major source of data. However, at this point of our analysis a general methodological problem appeared on our research agenda: An exhaustive study on all supra-national DPOs is out of the question when it comes to interviewing representatives of supra-national DPOs as the field to be covered is far too broad; additionally, it cannot be expected that all DPOs have the resources to participate in expert interviews. An exhaustive study of organisational structures of all supra-national DPOs seemed for the same reason unrealistic as well.

Hence, we had to decide upon the size and characteristics of a realistic sample of organisations and respective representatives in order to achieve meaningful results. A significant methodological problem was of course that the research field of European disability rights activism is not vastly covered yet. Employing a rather explorative approach means that we ultimately cannot determine the most relevant characteristics that may define a meaningful sample. Therefore, for the exploration of the field of supra-national DPOs, we considered the preliminary work for Deliverable 9.1 as well as the minutes of the national and European stakeholder committees of DISCIT. Using contacts with all stakeholders directly related to the DISCIT project also seemed to be a good start, but as the field of disability rights activism is versatile, we extended our sample to a degree that enabled us to cover at least a greater part of the variety of disability rights activism at the European level.

Initial web research and prior knowledge also seemed to provide for a preliminary typology of supra-national DPOs, as we surmised that similarly to national DPOs, supra-national DPOs are

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either organised in umbrella organisations and advocacy coalitions or not, incorporate the principle of self-representation in the structure of their membership (possibly including organisations run by families of persons with disabilities) or act on behalf of persons with disabilities. Hence, the idea was to cover different types of supra-national DPOs. Further, we also conjectured that organisations could possibly be distinguished according to their main target group/focus of disability or impairment, which means between disability-specific and cross-disability organisations.

5.1. Developing a Sample of Supra-National DPOs

Concretising our empirical focus with regard to our research interest, we intended to primarily rely on data on and of organisations that have a focus at the European level. Further, we took account of the notion that it was probable that we could also identify organisations that have a clear impairment-specific focus. With the work programme of DISCIT in mind, we intended to put a special focus on these impairment groups that are defined for the overall research focus of DISCIT, to cover DPOs related to:

• Difficulties in seeing, blindness or limited eyesight • Intellectual and developmental impairments • Psychosocial difficulties • Mobility difficulties

For our sample, we also wanted to include organisations with a cross-disability approach as we were convinced that they are also an integral part of disability rights activism at the European level.

As a crucial step to identify the sample, we looked at the list of organisations that participate in the DISCIT consortium. The European Disability Forum (EDF) was a prominent starting point for our research, as it is actively involved in the DISCIT project. At the level of the European Union, EDF is one of the most central stakeholders. It is an umbrella organisation which was founded in 1996 after a longer process of constitution in the context of HELIOS II, the European Union's (EU) third action programme to assist disabled people (Malleier, 2011, p. 75f). Nowadays, EDF represents 25 European DPOs that are full members, 14 European DPOs that are ordinary members and a variety of other stakeholders. Therefore, we chose EDF to be part of our sample.

To determine relevant stakeholders that are members of EDF, we selected organisations that have the status of full members, as we understood their status possibly also to be related with their resources and/or impact at the European level. The relevance of European DPOs may be

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estimated due to memberships in European or international umbrella organisations and advocacy coalitions with regard to the type the DPO belongs to (either disability-specific or cross-disability). We assume that a high level of involvement in umbrella organisations, coalitions and other forms of cooperation is beneficial at various levels: It possibly increases the visibility, the organisational, material or immaterial resources of a DPO, the effectiveness of mobilisation and possible impact on other stakeholders’ philosophies, issues, strategies, views as well as the impact on disability politics as a whole. In addition, we were cautious to select EDF full members according to the dimensions of cross-disability and disability-specific organisations that relate to the categories of DISCIT.

As a next step, we considered the organisations that are part of DISCIT’s European Stakeholder Committee: Disabled People’s International Europe, the European Network on Independent Living and Inclusion Europe are members of this committee and also have full membership in EDF. Further, we added Rehabilitation International to our sample as an organisation that is active at the European level as well.

Next, we also considered the International Non-governmental Organisations (INGO) database of the Council of Europe. There is an extensive list of International NGOs that electronically can be filtered down to the “area of competence” of “disabled persons” on its website. After we applied our sample criteria, we added the following two organisations to our sample: The European Association of Service Providers for Persons with Disabilities and Mental Health Europe. According to these steps of research and selection, we compiled the following sample of organisations for expert interviews and data collection:

Table 2: Sample of Organisations for Expert Interviews & Data Collection

Name of Organisation Website 1 Action Européenne des Personnes Handicapées (AEH)

http://aeh-europe.de/

2 Disabled People’s International Europe (DPI-E)

http://www.dpi-europe.org/

3 European Alliance of Muscular Dystrophy Association (EAMDA)

http://www.eamda.eu

4 European Association of Service Providers for Persons with Disabilities) (EASPD)

http://www.easpd.eu

5 European Blind Union (EBU)

http://www.euroblind.org/

6 European Disability Forum (EDF)

http://www.edf-feph.org/

7 European Down Syndrome Association (EDSA)

http://www.edsa.eu

8 European Network on Independent Living (ENIL)

http://www.enil.eu/

9 European Network of (ex-) Users and Survivors of Psychiatry (ENUSP)

http://www.enusp.org/

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Name of Organisation Website 10 International Federation of Persons with Physical Disability

(FIMITIC) http://www.fimitic.org/

11 Inclusion Europe (IE)

http://www.inclusion-europe.org

12 International Federation of Spina Bifida and Hydrocephalus (IF SBH)

http://www.ifglobal.org

13 Mental Health Europe (MHE)

http://www.mhe-sme.org

14 Rehabilitation International (RI)

http://www.riglobal.org

5.2. Preparing a Topic Guide and Additional Documents for Expert Interviews

Consequently, a conceptualisation and a topic guide for the expert interviews were created that aimed at further exploring, qualifying and evaluating the Internationalisation of disability politics with regard to the CRPD. The key topics were:

1. Involvement in the implementation of the CRPD 2. Activities and policies related to specific CRPD-relevant policy issues 3. Making use of specific Articles of the CRPD 4. Promoting the political and public participation of persons with disabilities 5. Cooperation with other stakeholders

The first section aimed at gaining information on the DPO’s involvement in the implementation as stipulated in Article 4 of the CRPD, on how the DPO exerts influence at the European level with regard to the CRPD and on involvement in shadow reporting and monitoring. Further, this section asked for an evaluation of the impact of implementation processes. The second section focused on changes in practices of DPOs with regard to policy issues as raised by the CRPD. As regards policy issues, we focused on those which are most relevant to the topic of the DISCIT Work Packages, such as political participation, employment, independent living, etc. The topic guide also asked for the most important policy issues of the DPO. In the third section, the topic guide addressed the aspect of how the CPRD is used with regard to specific Articles that are related to the Work Packages of DISCIT and in general. The fourth section explored to what extent the stakeholder performs or promotes activities as regards the freedom of expression and opinion, and access to information and as regards the participation in political and public life. The fifth section investigated important cooperation with other stakeholders at the European level, such as other DPOs, the European Commission, legal experts, the press, etc. This section also directly addressed the question whether the CRPD has impacted opportunities for coalitions at the European level.

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This topic guide has a semi-structured, guideline-oriented design including briefing notes (Meuser & Nagel, 2013, p. 464). Empirically, interviews with experts are to be distinguished from life-course interviews or other interviews. In contrast to life-course interviews, for expert interviews the sequence of narration is of no importance. Instead, thematic units and topics possibly spread across the interview should be analysed according to thematic relevance (Meuser & Nagel, 2013, p. 466).

However, during the conceptualisation, the topic guide was arranged in a way that would ensure that the interview persons would be able to answer the most important questions at the beginning of the interview, so that in situations of lack of time, the questions at the end of the topic guide could be omitted. We also included a small biographical section on the interview person that allowed the interviewee to contextualise the expert interview with personal information and information on the experiences and positions within disability rights activism that the person gained throughout her or his life.

While telephone interviews in most cases do not take as long as personal interviews, we anticipated that each interview would take about one to two hours, also depending on the time the interview person is able and willing to invest. It was planned that the language used for all interviews was English, as this spares us the time consuming work of translation and guarantees the highest degree of comparability (for instance also with regard to used terminology). In addition, at the European level it can be expected that English is a more universally accepted and commonly used language than at national levels.

An informed consent was developed as well as several documents explaining the focus of the expert interview. The data collection template that was developed on organisational structures was filled out by the team of Work Package 9 based on desk research and prepared to be sent after the interviews were conducted. This deskwork was necessary prior to conducting the interviews as knowledge about the field in which the respective DPO and the interview person are situated is central to generate meaningful results. Therefore, our desk research also included research on rules and conventions, statutes, regulations, legal frameworks, and press coverage. As mentioned earlier, we also tried to gain prior knowledge on organisational structures, decision making & division of labour within the field of action of the representative (Meuser & Nagel, 2013, p. 464). After several internal review processes and a review at the DISCIT Midterm Workshop as a next step, we commenced with the recruitment of representatives of supra-national DPOs.

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5.3. Recruiting Representatives of Supra-National DPOs

Before conducting expert interviews, the question has to be raised who accounts as an expert in our context. In order to be able to analyse the concrete practices of European DPOs, with Meuser/Nagel (2013) we defined experts as persons who hold or held functions that are connected to special knowledge. Theoretically, this special knowledge is only available to the experts who fulfil or once fulfilled specific functions as insiders, in our case, in DPOs or in disability politics. For our research, the special knowledge of activists acting on an individual basis, of persons holding public offices or of politicians, as we elaborated on before, was outside the focus of our research interest. Special knowledge in our research context means insider knowledge of the organisational structures, activities and issues, the respective philosophies and strategies of DPOs and processes of decision-making of these stakeholders.

As a first step of recruitment, the above-listed organisations were contacted via email, providing information about the objectives of DISCIT, Work Package 9 and Task 9.2. These emails in most cases also included the note that the respective DPOs will be contacted again – preferably via telephone – within a given time frame to clarify questions, inquire for a concrete possible interview person, etc. We started with recruiting via DPOs’ official contacts because we assumed that it would not be probable to be able to choose from particular representatives of DPOs, but we rather estimated that we are dependent on the cooperation of the respective DPO and the representative they would recommend. During the recruitment process, we decided that it would be a good idea not to just inquire for one person per organisation at maximum, but to ask organisations to provide for several interviews given the representatives’ agreement to participation. The benefit of this strategy is that information provided on one DPO is offering a multi-perspective that possibly is also more comprehensive due to the temporal limitations single interviews per organisation have. A second recruitment strategy was to contact personal contacts of the DISCIT consortium that are members of supra-national DPOs, either in face-to-face situations, via email or telephone.

As regards the majority of contacts it proved to be useful to recruit via telephone. Sometimes the phone numbers provided on the official websites did not directly lead to recruitment of an interview person, but the snowball method led to the establishment of valuable contacts with regard to appropriate interview persons that had the capacity to be available for our study.

5.4. Conducted Expert Interviews and Data Editing

From the end of October until the end of November 2014, ten expert interviews with representatives from supra-national DPOs from our sample have been conducted. These

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interviews were conducted via telephone or via Skype, and afterwards have been saved digitally. With a part of the organisations, we were able to conduct interviews with several representatives. We want to thank all participants for their support, their time, and first and foremost, for their expertise and valuable contribution.

For most interviews, we were able to get responses to most of the questions of the topic guide. In addition, the participants in some cases also provided personal insights into disability rights activism and disability politics that even went beyond the asked questions. The average length of the interviews exceeds one hour, with the shortest interview being about 50 minutes, and the longest interview being about 140 minutes.

In our interviews, we were able to cover the perspectives of the following DPOs by means of the participation of the following number of representatives:

Table 3: Current State of Conducted Expert Interviews in Alphabetical Order of Acronyms

Name of Organisation Number of conducted interviews until December 2014

Action Européenne des Personnes Handicapées (AEH) 1 Disabled People’s International Europe (DPI-E) 2 European Disability Forum (EDF) 3 European Down Syndrome Association (EDSA) 1 European Network on Independent Living (ENIL) 1 International Federation of Spina Bifida and Hydrocephalus (IF SBH) 1 Rehabilitation International (RI) 1 Total number: 10

Unfortunately, we were not yet able to conduct expert interviews with the following organisations: European Alliance of Muscular Dystrophy Association (EAMDA), European Blind Union (EBU), European Network of (ex-) Users and Survivors of Psychiatry (ENUSP), International Federation of Persons with Physical Disability (FIMITIC), Inclusion Europe (IE), Mental Health Europe (MHE).

After the interviews had been conducted, meaningful quotes were marked. Further, passages regarding issues, activities and strategies as well as statements regarding the impact of the CRPD were marked in “rough transcriptions”. These “rough transcriptions” consist of transcribed passages as well as of paraphrased passages (to have material for analysis time-efficiently). While the interviews mainly focused on the level of practices, important information regarding organisational structures or external structures for disability rights activism were marked as well. Afterwards, all the relevant information was visualised in excel

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tables or compiled into lists comprising of phrases, issues etc. These tables were then analysed. In the following, we will present the empirical analysis of all relevant data gained in the research process according to the levels of structures and practices.

6. Empirical Analysis

Now that we have outlined our theoretical and methodological approach, in the following we will present our empirical analysis. The empirical part is principally based on two kinds of empirical data: the expert interviews as well as desk based research together with additional data we received by some of the DPOs.

The empirical analysis will be divided in four parts. Firstly, we want to concentrate on the opportunity structures at the European level. We will briefly give a description of the most important opportunity structures as part of the external structures which influence disability politics. Secondly, we will continue with the organisational structures of the investigated DPOs at the European level in order to examine the internal structures which determine the political influence organisations may have on disability politics. Thirdly, we will proceed with the practices that we analyse as issues, activities and strategies. An important aspect of the analysis of activities will be the utilisation of (available) opportunity structures, but we will also examine activities in a broader understanding. From the insights gained before, we will try to infer strategies that supra-national DPOs apply. Finally, we will present an inside perspective of representatives of supra-national DPOs and reflect upon the impact of the CRPD and related processes of the Internationalisation of disability politics. We will also present findings as regards implementation problems at the European level in a broad sense.

6.1. Opportunity Structures for European Disability Rights Activism at the European Level

As concerns the level of structures for supra-national DPOs, as described earlier, we will analyse these structures in the proposed perspective of the dimension of openness of the political system. As a data basis, we will rely on scientific publications and publicly available information (websites etc.).

In the following, we want to give a short overview of prevailing opportunity structures at the European level which enable DPOs to participate in the policy process. While the focus of our analysis is on the polity system of the European Union, we will also briefly outline the opportunity structures at the level of the Council of Europe (CoE). In accordance with the

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objective of this paper, we will attempt to evaluate whether identifiable transformational processes in the European polity systems can be explained by the impact of the CRPD.

6.1.1. The European Union

Hereinafter, we will present the most relevant political opportunity structures at the level of the European Union. The European Union is of particular interest as it also a contracting party of the CRPD.

6.1.1.1. Relevance of Disability Politics and the CRPD

As mentioned earlier in this paper, the European Union has only recently opened up for disability-related policy issues. Since its foundation, the European Union (resp. the European Communities) has drafted a variety of collocated legal initiatives related to disability. The entry into force of the Amsterdam Treaty in 1999 is often considered a milestone to the effect that disability was explicitly mentioned in the European constitution for the first time (Waddington, 2011, p. 433). This innovation has also been evaluated as a success of the insistent campaigning of European DPOs such as EDF and DPI-Europe in this matter (Hurst, 2005, p. 74; Maschke, 2008, p. 202f). The current Lisbon Treaty (entry into force in 2009) has further broadened the EU sphere of influence. While the Amsterdam Treaty had framed disability primarily in the context of anti-discrimination policy, the Lisbon Treaty elevated disability as an issue relevant to all policy fields of EU competence (Waddington, 2011, p. 433).

Thus, the EU negotiations about the legal configuration of the CRPD at the European level need to be seen in the light of this expansion of competences. Acknowledged as ‘regional integration organisation’, the EU has ratified the CRPD in December of 2010. It is the first legally binding international human rights treaty to which the EU is party; a circumstance which poses new challenges to the multi-level system of the EU. As pointed out by Waddington, two EU documents are of central importance regarding the division of competences between the EU and its member states (Waddington, 2011, p. 439ff): firstly, the Council Decision concerning the implementation of the CRPD6 and secondly, the Code of

6 Short for: Council Decision concerning the conclusion, by the European Community, of the United Nations Convention on the Rights of Persons with Disabilities (Council Decision 2010/48/EC [2010] OJ L 23/35)

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Conduct between the EU and its member states regarding the specific allocation of competences in respect of the implementation of the CRPD7.

According to these documents, the EU has exclusive competences in the following three policy areas: “the compatibility of State aid with the common market, the Common Customs Tariff, and obligations with respect to the EC/EU's own public administration, including recruitment and conditions of service of staff” (Waddington, 2011, p. 442). Second, the EU shares competences with its member states in the following policy areas: “combatting discrimination on the grounds of disability; free movement of goods, persons, services and capital; agriculture; transport; taxation; internal market; equal pay for men and women; trans-European network policy; and statistics” (ibid.). Lastly, the above mentioned Council Decision lists the following issues as subject to EU support, coordination and supplementation of national policies: “the development of a coordinated strategy for employment; the development of quality education; a Community vocational training policy; actions strengthening economic and social cohesion; and cooperation with third countries.” (Waddington, 2011, p. 443)

6.1.1.2. Opportunity Structures within the European Union

Regarding the political participation opportunities of European DPOs, we can detect a variety of prevailing opportunity structures within the polity system of the EU. This is also reflected in Art. 11.2 of the current Treaty of the European Union (TEU) which stipulates that EU “institutions shall maintain an open, transparent and regular dialogue with representative associations and civil society”.

As previously mentioned in chapter 3, we assume that the establishment of opportunity structures at the level of the EU has resulted mainly from a general EU transformation process (of which the expansion of EU competences in the field of disability policy has emerged as a side benefit) rather than from the impact of the CRPD with its implication towards more political inclusion of persons with disabilities and their organisations. At this stage (with a four years period of legal force of the CRPD in the EU to retrospect), we expect that the impact of the CRPD will turn out to be difficult to assess.

One prominent exception is the EU monitoring framework as required by Article 33, CRPD. However, the analysis of the involvement of DPOs in the monitoring processes of the CRPD at the European level is still subject to ongoing research due to the fact that the framework has

7 Short for: Code of Conduct between the Council, the Member States and the Commission setting out internal arrangements for the implementation by and representation of the European Union relating to the United Nations Convention on the Rights of Persons with Disabilities (Code of Conduct 2010/C 340/08 [2010] OJ C 340/11)

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been established only in January 2013, so detailed information on the framework as an opportunity structure is not presentable yet.

In the following, we will present the most relevant opportunity structures for disability rights activism at the level of the European Union. For reasons of feasibility, we will confine ourselves to the two political institutions, the European Parliament and the European Commission. However, we want to stress that we are fully aware that other EU bodies also provide participation opportunities for DPOs such as the Council of the European Union8 or the Fundamental Rights Agency (FRA)9.

6.1.1.3. Opportunity Structures within the European Parliament

As one of the two EU institutions with legislative power (the other being the Council of the European Union), the European Parliament (EP) can look back to a long tradition of cooperation with other stakeholders. Regarding participation opportunities by persons with disabilities and their organisations, the establishment of the Disability Intergroup in 1980 clearly marked a milestone. It is thus one of the oldest European Intergroups and, though not part of the official structure of the EP, serves as a platform to enhance the dialogue between Members of the European Parliament (MEPs) across all political groups and stakeholders from European DPOs. While its composition of participant MEPs remains fixed during each parliamentary term, the participant stakeholders representing persons with disabilities and their organisations vary with each of the six meetings which are held every year (European Disability Forum, 2013). The European Disability Forum (EDF) provides secretary services to the Disability Intergroup while its Bureau, composed solely by MEPs, is responsible for the organisation and management of the Intergroup; this includes the admission of representatives of the Civil Society Representatives to its meetings.

Another opportunity for DPOs to gain simplified access to the European Parliament is to enter the European Transparency Register. This transparency register was established in 2011 by the European Parliament and the European Commission with the goal to address the objectives of Art. 11.2, TEU. The interinstitutional agreement which sets out the rules of procedure of the

8 Since the Council of the European Union offers only limited access to the civil society sector, we will not further consider its activities in this paper. For an overview of its activities we would like to refer to the European Union section in Part II of the European Yearbooks of Disability Law (Waddington & Quinn, 2009, 2010; Waddington, Quinn, & Flynn, 2011, 2013) 9 As an agency of the European Union, the Fundamental Rights Agency also endeavours to maintain dialogue with civil society through the Fundamental Rights Platform (FRP). During our preliminary research for this paper, we learnt that this participation opportunity is indeed used by some EU-level DPOs. However, since we aim at the investigation of participation opportunities in the policy process, we have decided to focus on political institutions rather than on EU agencies since their influence in the policy process is restricted to provide expertise.

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register10 stipulates that the registration is voluntary, however, the provision of “badges affording long-term access to the European Parliament’s buildings” (Part VII, Art. 22 of the respective interinstitutional agreement) is supposed to make registration attractive. However, it remains an open question, whether this incentive is of any relevance for effective lobbying since lobbying activities certainly cannot be reduced to the sphere of the Parliament building. As White points out: “Whilst direct observation of meetings takes place in the Parliament building, and whilst observation of such meetings helps to keep lobbyists au fait with developments, more significant contacts with MEPs and with their staff may take place elsewhere. (White, 2013, p. 276) We will take up this controversial subject when analysing the actual use of this particular participation opportunity by DPOs.

6.1.1.4. Opportunity Structures within the European Commission

The European Commission (hereinafter: the Commission) is both, the executive body of the EU and the only EU body which has the right of initiative to propose law. Due to its key role in the EU policy process, the prevalence and functioning of political opportunity structures of the Commission are of central interest for our study. As outlined in the theoretical concept of ‘resource exchange’ (confer chapter 4.2 of this paper), we assume that both, the Commission as well as stakeholders from interest groups benefit from a regular dialogue. With its need for expert advice and socio-political legitimacy (confer chapter 2 of this paper), the Commission has therefore established a variety of advisory bodies to include the civil society sector into the policy process; these advisory bodies are called Commission Expert Groups (also referred to as European Expert Group). In the following, we want to give a short overview of what we consider relevant disability-related opportunity structures within the European Commission.

Previously affiliated to the Directorate General (DG) for Justice, the Unit for the ‘Rights of Persons with Disabilities’ (hereinafter: Disability Unit) has only recently been relocated to the DG Employment, Social Affairs and Inclusion in the course of the restructuring of the newly constituted Juncker Commission (European Commission, 2015).11 It represents the “core unit within the European Commission on disability issues” (Waddington et al., 2013, p. 233). The Disability Unit presides over the Inter-Service Group on Disability, a platform which brings

10 Short for: Agreement between the European Parliament and the European Commission on the establishment of a transparency register for organisations and self-employed individuals engaged in EU policymaking and policy implementation. (Interinstitutional Agreements [2011] OJ L 191/29) 11 In our state of research we noted a shift from compensatory to rights-based policy (Priestley, 2007, p. 70, Waldschmidt, 2009) in the past to which the location of the Disability Unit within the DG Justice may be seen as equivalent. The relocation to the DG Employment, Social Affairs and Inclusion raises the question if the perspective on disability politics as a broad rights-based issue is being challenged now.

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together policy-makers and EU-officials from all DGs to enhance disability mainstreaming within the EU policy process (ibid.). It further funds a variety of European level DPOs and, at the same time, offers several participation opportunities to these DPOs.

While it invites European DPOs to annual conferences and events (ibid.), it also hosts the “High Level Group on Disability” (HLGD), a Commission Expert Group with the goal “to promote - in collaboration with the Member States and with non-governmental organisations of and for people with disabilities - the exchange of useful information and experience especially concerning innovative policies and good practice” as set out in Part III, Art. 2 of Council Resolution 97/C 12/01 on equality of opportunity for people with disabilities12. Its main task is to generate common European guidelines for disability-related policy issues by consolidating a dialogue between national as well as European policy-makers and representatives from organisations of and for persons with disabilities (as framed in the above mentioned Council Resolution).

While the Disability Unit is certainly the Commission institution of highest relevance for disability policy issues, the Commission has established a variety of significant Expert Groups which address the matters of persons with disabilities. The DG Employment, Social Affairs and Inclusion, for instance, further coordinates two other Commission Expert Groups affecting the lives of persons with disabilities: the “European Expert Group on the Transition from Institutional to Community Based Care” (hereinafter: EEG Community Based Care) and the “EU Stakeholders for the platform against poverty” (hereinafter: Stakeholders against poverty). The DG Health and Consumers leads the “EU Health Forum” (EU HPF) and the DG Regional Policy set up the Commission Expert Group “Structured Dialogue with European Structural and Investment Funds' partners group of experts” (ESIF SD). One last Expert Group we would like to add is the Consultative Group of Stakeholders on Air Passenger Rights (APRCG) which is affiliated to the DG Mobility and Transport.

For our analysis the use of these Commission Expert Groups is of central importance. We assume that in spite of its relative openness towards institutionalised forms of political participation by civil society, the Commission remains highly selective regarding the issues and its stakeholders. As Mahoney points out: “The Commission determines the nature of interest representation in the policy-making process in a much more direct manner by selecting

12 Short for: Resolution of the Council and of the Representatives of the Governments of the Member States meeting within the Council of 20 December 1996 on equality of opportunity for people with disabilities (Council Resolution 97/C 12/01 [1997] OJ C 012, 13/01/1997)

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in what policy areas public debate will be fostered and which interests will participate in the formal forums of debate.” (Mahoney, 2004, p. 447)

6.1.2. The Council of Europe

In the following we will delineate the Council of Europe and its relevance for the field of disability politics. While our focus is at the level of the European Union during our research the Council of Europe has proved to be as a significant alternative stakeholder offering own opportunity structures.

6.1.2.1. Relevance of Disability Politics and CRPD

As truly intergovernmental organisation without own supranational legal competence, at first glance, the Council of Europe does not seem to serve as a pertinent political arena for DPOs to advocate their agendas. Moreover, due to this lack of legislative power the Council of Europe was and is not authorised to ratify the CRPD. In spite of the lack of legal obligation of the CRPD at the level of the Council of Europe, Clifford pointed out that the CRPD did very well contribute to an identifiable paradigm shift in the jurisprudence of the European Court of Human Rights (ECtHR) as well as in the motivation of its member states to consolidate disability rights at the national level13 (Clifford, 2011, p. 21). At the level of the Council of Europe the CRPD appears to function as a catalyst for the ongoing dynamics in the negotiations between disability rights activism on the one hand and disability politics on the other.

6.1.2.2. Opportunity Structures within the Council of Europe

However, the most relevant sources of CoE jurisdiction regarding human rights issues remain its two treaties, the European Convention of Human Rights (ECHR) and, more importantly, the European Social Charter (ESC). The national implementation processes of the latter are monitored by the European Committee of Social Rights (ECSR). In addition to monitoring activities accomplished by the ECSR itself, the ECSR also provides participation opportunities to NGOs by means of Collective Complaints on the ground of possible violations of the ESC. To be entitled to submit such complaints, an NGO first has to apply for participatory status

13 Since our focus is placed on the polity system of the European Union, we would therefore like to refer to the Council of Europe section in Part II of the European Yearbooks of Disability Law for a more detailed overview of recently decided disability related case-law as well as of conclusions by the ECSR: (Waddington & Quinn, 2009, 2010; Waddington et al., 2011, 2013)

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with the Council of Europe, a rank which was introduced in 2003. Once participatory status is granted, the respective NGOs have the right to actively participate “in the policies and work programme of the Council of Europe” as member of the Conference of International Non-governmental Organisations of the Council of Europe “which constitutes civil society’s pillar in the Council of Europe ‘quadrilogue’ with the Committee of Ministers, the Parliamentary Assembly and the Congress of Local and Regional Authorities.” (ENIL, 2011) Subsequently, INGOs with participatory status can apply for the entitlement to raise Collective Complaints within the Governmental Committee of the European Social Charter and the European Code of Social Security.

6.1.3. Conclusions

We have presented a number of European opportunity structures offering political participation opportunities to DPOs. Table 4 gives an overview of the opportunity structures identified as relevant for our study. In chapter 6.3.2 we will investigate which European DPOs make use of these structures and how they assess their activities in this respect.

Table 4: Opportunity Structures at the European Level

Polity System Political Institution

Opportunity Structures Requirements

European Union European Parliament Disability Intergroup Admission by the Intergroup Bureau

“long-term access to EP building” Registration in Transparency Register

European Commission Commission Expert Groups: Invitation by the respective chairing Commission representative

HLGD EEG Community Based Care Stakeholder against poverty EU HPF ESIF SD

Council of Europe Committee of INGOs Collective Complaints Participatory Status with the CoE plus entitlement to submit Collective Complaints

Within our framework, the requirements of each institution are to be regarded as characteristic for the openness of the European political institutions providing opportunity structures to supra-national DPOs.

Taken as a whole, we can state that there is certain openness at European level as regards the involvement of the DPOs in disability politics. Firstly, as Tarrow suggests, we can find a new venue for DPOs offered by European institutions such as the Expert Groups initiated by the

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European Commission. However, it is not only the EU which provides a new venue but also the CoE with its Committee of INGOs offers new opportunity structures for DPOs. Secondly, this new venue offers an openness of the political system which is partly due to the structural features of some institutions. According to the concept of resource exchange (Princen & Kerremans, 2008, p. 1134ff) it is not only the DPO which benefits from its involvement in politics but also the respective institution such as for example the European Commission with its need for expert advice.

As regards the impact of the CRPD merely preliminary findings can be assessed since the European Union ratified the CRPD only four years ago. Therefore, definitive changes in disability politics may require more time to pass, especially concerning modifications at the level of structures. The monitoring as required by Article 33 of the CRPD will constitute a benchmark in this regard. Due to the fact that the monitoring has not been set up until 2013 concluding remarks are not possible yet. Nevertheless, the impact of the CRPD should not be neglected. As outlined in 6.1.2.1 the CRPD already bore fruits as concerns the paradigm shift in the jurisdiction of the ECtHR or the motivation of CoE’s member states to consolidate disability rights at the national level. The CRPD therefore may be regarded as catalyst in the process of Internalisation of disability politics.

However, as outlined in the theoretical part, we assume that the organisational structures of the DPOs constitute an interceding variable as regards the utilisation of the given opportunity structures. As shown in table 4, each opportunity structure goes along with certain prerequisites. Therefore, in the following section, we will approach the analysis of the organisational structures of our sample of 14 European DPOs which might enable, motivate or hinder these DPOs to make use of these structures (Princen & Kerremans, 2008, p. 1131).

6.2. Organisational Structures of European DPOs

With regard to our sample of 14 European DPOs, we will now have a closer look at their organisational structures. After a short overview of the formal status and the years of foundation of these DPOs and a brief classification of the sample we will concentrate on the aspect of financial support by the Commission and the aspect of cooperation in advocacy coalitions.

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6.2.1. General Information: Target Group, Legal Status and Year of Foundation

Table 5 lists our selection of 14 European DPOs with information on their major target groups, year of foundation and legal status. These findings result from extensive documentary research14 complemented by information provided by the interviewed experts.

Table 5: Target groups, Legal Status and Year of Foundation

Organisation Target Group Year of Foundation

Legal Status

1 AEH – Action Européenne des Personnes Handicapées

cross-disability 1979 no data

2 DPI-E – Disabled People’s International Europe

cross-disability 1992 officially registered (in France)

3 EAMDA – European Alliance of Muscular Dystrophy Association

disability-specific: physical disability 1974

officially registered (in Slovenia)

4 EASPD – European Association of Service Providers for Persons with Disabilities

cross-disability

1996

officially registered (in Belgium)

5 EBU – European Blind Union disability-specific: visual impairment, blindness

1984 officially registered (in France)

6 EDF – European Disability Forum

cross-disability 1996 officially registered (in Belgium)

7 EDSA – European Down Syndrome Association

disability-specific: intellectual disability 1987 no data

8 ENIL – European Network on Independent Living

cross-disability 1989 officially registered (in Ireland)

9 ENUSP –European Network of (ex-) Users and Survivors of Psychiatry

disability-specific: psycho-social disability 1990

officially registered (in Germany)

10 FIMITIC – International Federation of Persons with Physical Disability

disability-specific: physical disability 1953

officially registered (in Germany)

11 IE – Inclusion Europe disability-specific: intellectual disability 1988 officially registered (in Belgium)

12 IF SBH – International Federation of Spina Bifida and Hydrocephalus

disability-specific: physical (and/or intellectual) disability

1979 officially registered (in Belgium)

13 MHE – Mental Health Europe disability-specific: psycho-social disability 1985 officially registered (in Belgium)

14 RI – Rehabilitation International

cross-disability 1922 no data

Six of these 14 DPOs address the matters of all persons with disabilities without a disability- respectively impairment-specific approach (AEH, DPI-E, EASPD, EDF, ENIL and RI). Three

14 Source of information: websites of the organisations (including position papers, statutes, newsletters, etc.), information provided by official databases (such as the CoE-database of INGOs or the EU Transparency Register)

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DPOs consider persons with physical disabilities as their target group (EAMDA, FIMITIC, IF SBH) while two DPOs advocate the concerns of persons with psycho-social disabilities (ENUSP, MHE), two DPOs have a focus on intellectual disabilities (EDSA, IE) and one DPO advocates the rights of blind persons (EBU).

Regarding the legal status, at present we only have information of eleven DPOs of the sample. All of these DPOs are officially registered as non-for-profit NGOs with a majority of them registered in Belgium (EASPD, EDF, IE, IF SBH and MHE). While most organisations primarily are European organisations, two of the 14 DPOs are international organisations (IF SBH, RI). Furthermore, four DPOs are European branches of international organisations (DPI-E as European branch of Disabled People’s International, EBU as European branch of the World Blind Union, ENUSP as European branch of the World Network of [Ex-]Users and Survivors of Psychiatry and IE as European branch of Inclusion International).

As regards the year of foundation, within our sample RI was the first DPO to be established in the 1920s. Then a longer period of stagnation followed with FIMITIC’s establishment in the 1950s as an exception. The 1970s marked a rise of foundations with the establishment of 3 DPOs (EAMDA, AEH and IF SBH). This process continued with the foundation of 5 DPOs in the 1980s (EBU, MHE, EDSA, IE and ENIL). The 1990s marked the last period of foundations with 4 DPOs (ENUSP, DPI-E, EDF and EASPD. In conclusion, the period in which most of the DPOs of our sample were established was between the 1970s and 1990s.

6.2.2. Financial Resources

One central issue in our research on the organisational structures of European DPOs is the aspect of financial resources. As referred to earlier in this paper, we regard the financial status – and thus, the dependence on respectively the independence from external financial sources – as a crucial variable affecting the capability to participate in the policy process. In the following, we will have a closer look at the financial support provided by the European Commission. The Commission funds a vast number of EU interest groups most of which advocate for social or civil issues “[…] with the aim of fostering more balanced dialogue” (Mahoney, 2004, p. 446).

The most relevant financial instrument in this respect is the PROGRESS programme for Employment and Social Solidarity which in the period between the years 2007 and 2013 financially supported “activities with a strong Europe-wide dimension and of an appropriate scale to ensure EU added value” (European Commission, undated). Inter alia, the PROGRESS programme is meant to give “support to the operating costs of European level networks of NGOs” (European Commission, 2006, p. 8). With reference to our sample of the 14 European

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DPOs, we can find that seven of these organisations have received Commission subsidies with resources from the PROGRESS programme:

Table 6: Financial Support with Resources from the PROGRESS Programme

Organisation Financial Support with resources from the PROGRESS programme 2007 2008 2009 2010 2011 2012 2013 1 AEH – – – – – – – 2 DPI-E – – – – – – – 3 EAMDA – – – – – – – 4 EASPD 124,965 € 122,893 € 136,471 € 144,756 € 153,790 € 173,457 € 181,406 € 5 EBU – – – – – – 137,973 € 6 EDF 657,500 € 913,987 € 935,000 € 949,518 € 965,000 € 938,244 € 911,467 € 7 EDSA – – – – – – – 8 ENIL – 123,000 € 163,792 € 127,000 € 169,095 € 166,132 € 162,216 € 9 ENUSP – – – – – – – 10 FIMITIC – – – – – – – 11 IE 124,843 € 124,925 € 134,585 € 141,977 € 149,376 € 149,262 € 153,203 € 12 IF SBH – 125,000 € 125,000 € 125,000 € 132,500 € 150,000 € 149,805 € 13 MHE – 1,080,444 € 558,872 € 582,924 € 584,492 € 612,524 € – 14 RI – – – – – – –

Source of data: European Commission Financial Transparency System http://ec.europa.eu/budget/fts/index_en.htm

Three of these seven Commission funded European DPOs have received relatively stable subsidies during the whole period of existence of the PROGRESS programme, from 2007 until 2013 (EASPD, EDF, IE). Three further DPOs started to receive Commission funding in 2008 (ENIL, IF SBH, MHE), while according to the information provided by the Financial Transparency System MHE has not received any PROGRESS funding in 2013. EBU has only recently been admitted to PROGRESS subsidies in 2013.

With regular yearly Commission support to the extent of more than 900,000 €, EDF has by far received the biggest amount of PROGRESS subsidies, followed by MHE with regular support of more than 500,000 a year. The remaining five DPOs are each supported with annual subsidies of about 150,000 € (EASPD, EBU, ENIL, IE, ISFBH). Up to and including 2010, the annual subsidies were dispensed by the DG Employment, Social Affairs and Inclusion (DG EMPL). In 2011, the responsibility for disability issues was assigned to the DG Justice which has, from then on, dispensed the funding. MHE, however, has continued to receive their PROGRESS subsidies through the DG EMPL.

With regard to the DPOs which do not receive funding from the PROGRESS programme, we can add some information on their financial status. This information is either based on statements of DPO representatives in the expert interviews or on material derived from our own desk research.

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The representative of AEH comments on their financial situation by stating that: “We don’t make campaigns, we have no money, so we don’t make campaigns. What we do is asking our members to lobby at their national level.” (AEH) Further it is pointed out that the organisation is independent which means that they work with their own money which in their case is equivalent to working without money. The representatives are working without being paid for their commitment.

DPI Europe’s representatives describe their financial situation quite similar as AEH. They report on “big financial problems” in the past years and explain that they were working on an “honorary basis” as they did not receive “direct financial means by the European Union” (DPI-E_1). It is pointed to the fact that funding mostly is based on projects. The importance of a solid financial basis is highlighted as follows: “You cannot represent yourself very well if you always have to look for money and resources.” (DPI-E_1)

EDSA reports on similar difficulties. Their representatives raise the importance of funding and resources for being capable of acting. EDSA does not dispose of an “operational budget”. All members of the board work voluntarily without receiving payments. It is highlighted that EDSA needs more funding as they are only financed by membership fees. Therefore, EDSA is dependent on “the opportunities that some members offer to the network” (EDSA), this means its national member organisations and their resources.

We could not conduct an interview with ENUSP but our desk research provided us with information on their financial situation. In their strategic plan 2012-2015 ENUSP reports that between 2005 and 2010 they lost their “only paid worker – the ENUSP Secretary” (Secreteriat General of the Council of Europe, 2014, p. 3) who was financed by the Dutch government through the Dutch national member organisation. The work continued on a voluntary basis and “ENUSP’s presence at different events or in relevant consultation processes became reliant on occasional invitations and the inviters’ capacity to meet minimal costs” (Secreteriat General of the Council of Europe, 2014, p. 4). Nevertheless, they were able to rebuild their organisation, partly due to the financial support which ENUSP received through MHE from the PROGRESS programme (ibid.). An important feature of ENUSP is that the organisation “works independently of service providers, professional bodies, family members’ organisations and pharmaceutical companies” (Secreteriat General of the Council of Europe, 2014, p. 3).

RI representatives provided us with the information that “RI Europe is mainly funded through a small membership fee”. The expenses for European meetings are covered by the national member organisations.

We could not get any information on the financial situation of EAMDA and FIMITIC.

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Concluding, there are certain patterns which can be derived from the information we got on the financial situation. With regard to the organisations which do not receive financial support from European funds, three aspects are to be highlighted in the following. First, the issue of independence is highlighted by several organisations which do not receive any EU subsidies. Second, the lack of financial support mostly implies voluntary commitment by the members of the respective organisations. Third, the absence of EU subsidies is partly compensated by (strong) national member organisations which provide a financial basis for the work at the European level. The financial standing of the organisations will be reconsidered when we have a closer look on the actual use of opportunity structures at the European level.

6.2.3. Collaboration in EU Level Advocacy Coalitions

Another aspect of organisational structures is the collaboration of European DPOs in advocacy coalitions. Drawing on Baumgartner, in chapter 3 we defined an advocacy coalition as a “set of actors who share the same policy goal” (Baumgartner, 2009, quoted in: Klüver, 2013, p. 45). At the level of the European Union, we can identify a number of advocacy coalitions several of which are of relevance for disability rights activism. Most of these coalitions advocate a much broader spectrum of issues exceeding what we consider typical disability advocacy activities. Advocacy coalitions usually consist of NGOs representing a variety of stakeholders some of which may be DPOs. In the following, we will refer to this type of coalition as social rights advocacy coalitions, understood as coalitions of DPOs and other NGOs from the social sector, whereas coalitions solely comprised of DPOs will be called disability rights advocacy coalitions. In this chapter we will present two important social rights advocacy coalitions and one disability rights advocacy coalition.

Both social rights advocacy coalitions receive Commission funding and, as we will elaborate in the next chapter, have consolidated stable connections with the Commission through its consultation and participation bodies. One of these social rights advocacy coalitions is the European Social Platform (ESP). It is a coalition of “European rights and value-based NGOs working in the social sector“ (European Social Platform, 2014b) and currently comprises 47 member organisations (European Social Platform, 2014a). ESP receives Commission subsidies (operating grants) with resources from the ‘Europe for Citizens‘ programme in the amount of 700,000 € in 2013 (source: EC Financial Transparency System) and aims “to promote social justice, equality and participatory democracy by voicing the concerns of member organisations” (European Social Platform, 2014b).

The other social rights advocacy coalition identified as relevant for European DPOs is the European Patients Forum (EPF). It is a coalition of “patients’ groups in public health and

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health advocacy across Europe” (European Patients Forum, 2014a) and, at present, incorporates 64 member organisations (European Patients Forum, 2014b). EPF receives operating grants by the Commission from the ‘second programme of Community action in the field of health’ in the amount of 653,966 € in the year of 2013 (source: EC Financial Transparency System) and aims at “promoting a patient-centred philosophy and agenda with the EU institutions” (European Patients Forum, 2014c).

The disability rights advocacy coalition we will consider in this study is the European Coalition for Community Living (ECCL). While the two social rights advocacy coalitions presented above have a very broad and overarching agenda exceeding disability advocacy issues, ECCL is an coalition of European DPOs founded in 2005 aiming at “working towards the social inclusion of people with disabilities by promoting the provision of comprehensive, quality community-based services as an alternative to institutionalisation” (European Coalition for Community Living, undated). With the entry-into-force of the CRPD, ECCL has been concentrating on Art. 19, CRPD ("Living independently and being included in the community"). ECCL does not receive any direct Commission funding, however, it endeavours to establish connections to EU institutions with the goal to “advocate for and monitor progress towards de-institutionalisation in Europe, campaign for, and provide information on, the development of comprehensive, quality community-based services and de-institutionalisation.“ (ibid.).

Given its nature as a coalition of several EU level DPOs, the European Disability Forum (EDF) also falls in the category of a disability rights advocacy coalition aiming at the representation of persons with disabilities and their organisations at the European level. After all, membership in EDF has served us as a central category to identify key actors in the field of disability rights advocacy. However, since EDF is very active in collaborating in other advocacy coalitions, in the context of this study, we regard EDF as both, an advocacy coalition as well as an EU level DPO.

In the following, we want to clarify which of the 14 European DPOs of our sample collaborate in the advocacy coalitions as presented in this chapter. Figure 3 gives an overview of the membership structure of our sample regarding full and ordinary membership in EDF (dark grey and light grey circle surrounding EDF), membership in ECCL (blue oval), full membership in ESP (red oval) and full membership in EPF (green oval).

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Figure 3: EU Level Advocacy Coalitions

6.2.4. Conclusions

In this chapter, we presented some organisational structures of our sample of 14 European DPOs. After classifying these organisations according to their target group and their geographical alignment (European vs international) respectively their affiliation in global organisations, we investigated the financial resources of these DPOs with particular focus on Commission funding. Seven of the 14 DPOs of our sample receive Commission funding with resources from the PROGRESS programme, in differing quantity and regularity. Some of those which do not receive funding from the PROGRESS programme report on certain difficulties with regard to their financial standing. The lack of funding at European level is in some cases compensated by (strong) national member organisations.

Lastly, we took a look at the collaboration of the 14 European DPOs in four EU level advocacy coalitions, two social rights advocacy coalitions (ESP and EPF) and one disability rights

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advocacy coalition (ECCL). Nine DPOs of our sample collaborate in at least one of these advocacy coalitions, while EDF, as a member in all these coalitions, is most active in this respect. With regard to the impact of the CRPD, ECCL is the only organisational structure that explicitly refers to one of its key issues, independent living (Art. 19, CRPD).

If we relate our findings to the previous chapter on the opportunity structures at the European level, we may have a closer look at our findings. As outlined in chapter 6.1.3 certain prerequisites are necessary to be able to make use of the opportunity structures. Referring to the organisational structures as interceding variable we may discern the following. Firstly, nearly all of the DPOs are officially registered which may be seen in relation to certain requirements of the European political institutions. It can be assumed that the acknowledgement as possible stakeholder in disability politics also depends on their legal status. As pointed out in chapter 4.2 collective action at the European level takes a different form than at the national level.

Secondly, we can identify huge differences as regards the financial resources of the involved DPOs. The missing (financial) resources of some of the DPOs have fundamental consequences for their engagement in disability politics at the European level. Usually this deficiency is compensated for by a stronger national focus and its strengths. This possibly can be related to a minor involvement of DPOs in the advocacy coalitions we presented earlier. AEH, DPI-E, EDSA and FIMITIC, all organisations which do not receive funds from the PROGRESS programme, are not involved in any of these advocacy coalitions. Those DPOs which receive funding from this programme tend to be involved in more than one advocacy coalition (except for IF SBH which is not involved in any of the presented advocacy coalitions).

As regards the Internationalisation, we may take up an observation we made before. When having a closer look at the year of foundation, we can state that half of the investigated DPOs at the European level were founded between 1984 and 1992, a period of utmost importance for disability politics at the global level. This period corresponds to the UN Decade of Disabled Persons.

According to our findings we can assume an impact of the internal (organisational) structures on the utilisation of the external (opportunity) structures. Nevertheless, in the following we will enlarge upon this aspect by shifting our focus to the actual practices of the DPOs. A part of the analysis will also try to answer the question how the organisational structures presented in this chapter affect the use of the opportunity structures presented in the previous chapter.

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6.3. Practices of European DPOs

Having investigated the level of structures – external as well as organisational structures – we will continue with the level of practices. As outlined before, with respect to practices we distinguish in the following between issues, activities and strategies in order to examine different aspects of practices and point to possible interactions between these. At this point we want to refer back to our conception to stress that we understand strategies as an analytical dimension to qualify activities with regard to issues. Therefore, strategies cannot be inferred directly. Beginning with our empirical analysis of practices, we will first start by providing an overview of the issues which are referred to by the supra-national DPOs of our sample.

6.3.1. European DPOs’ Issues

We will now take a look at the level of issues as we assume that the DPOs of our sample differ with regard to their focuses. As we are interested in the impact of the CRPD, we will examine their themes by referring exclusively to issues that are represented in the different Articles of the CRPD.

In the following table we present an overview of the issues addressed by the supranational DPOs within our sample. The research which preceded the compilation of this table was based primarily on publicly available documents on the websites of the respective DPOs. Notwithstanding, we cannot rule out the possibility that the DPOs do not feel adequately represented with their focuses. Furthermore, the overview should not be regarded as a fixed picture but rather as a dynamic as themes may change over time. We tried to give an overview of how certain issues within the framework of the CRPD are covered by each DPO. Certainly, the issues represented in the overview focus on the CRPD as we aim at assessing the current impact of the CRPD but there are far more issues which are difficult to be mirrored in a single Article of the CRPD, such as for example the theme of self-representation, peer-support, bioethical issues, very vulnerable groups apart from women and children, the impacts of the European economic crisis, to name but a few.

As the legend clarifies, we made a distinction of the issues based on the underlying source of information. Those issues which were assessed only on basis of our desk research are marked (with an x, or if we got the impression of higher importance it was marked with a bold x) differently than those which were highlighted in the interviews (marked by a coloured box). If we could not find any information on a certain issue the box was left blank.

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Table 7: Issues Addressed with regard to the CRPD (Articles 5-32)

CRPD Article

AEH DPI-E EAMDA

EASPD EBU EDF EDSA ENIL ENUSP FIMITIC

IE IFSBH MHE RI15

5 - Equality & non-discrimination

x x x x x x x x x x x x x x

6 - Women with disabilities

x x x x x x x x

7 - Children with disabilities

x x x x x

8 - Awareness-raising

x x x x x x x x x x x x

9 – Accessibility

x x x x x x x x x x x

10 - Right to life

x x x

11 - Situations of risk & humanitarian emergencies

x x x

12 - Equal recognition before the law

x x x x x

13 - Access to justice

x x

14 - Liberty & security of the person

x

15 - Freedom from torture or cruel, inhuman or degrading treatment or punishment

x x x

16 - Freedom from exploitation, violence & abuse

x x x

17 - Protecting the integrity of the person

x x

18 - Liberty of movement & nationality

x

15 As our research was based on publicly available documents on the homepages of each DPO, we will not be able to distinguish clearly between the focus of RI and RI Europe as RI Europe does not have its own homepage.

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CRPD Article

AEH DPI-E EAMDA

EASPD EBU EDF EDSA ENIL ENUSP FIMITIC

IE IFSBH MHE RI

19 - Living independently & being included in the community

x x x x x x x x x x x

20 - Personal mobility x x x x

21 - Freedom of expression & opinion, & access to information

x x x x

22 - Respect for privacy

23 - Respect for & the family

x x x

24 – Education

x x x x x x x x x

25 – Health

x x x x x x x x x x

26 - Habilitation and rehabilitation

x x x

27 - Work and employment

x x x x x x x x x x x x

28 - Adequate standard of living & social protection

x x x x x x x x x

29 - Participation in political & public life

x x x x x

30 - Participation in cultural life, recreation, leisure & sport

x x x x x

31 - Statistics & data collection

x x

32 - International cooperation

x x x

Source: Websites of the listed supranational DPOs and expert interviews x Issue is mentioned as such in the documents on their website or on the website itself x Issue seems to be of utmost importance Issue is not mentioned as such, neither in the documents investigated nor in the interview

Issue was mentioned within the interview

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The table shows quite clearly that there exists a kind of centralisation of issues covered by the majority of the DPOs involved in our sample.16 These issues are:

• Equality and non-discrimination • Awareness-raising • Accessibility • Living independently and being included in the community • Work and employment

The issues of equality and non-discrimination as well as awareness-raising are to be regarded as quite general issues which are covered almost by all DPOs. Accessibility also seems to be an important issue covered by the majority of DPOs. It can be supposed that accessibility affects persons with very different kinds of impairments. The same is true for work and employment as supposedly most persons with disabilities face barriers with regard to employment opportunities on the open labour market. The fact that independent living also seems to be an important topic for almost all DPOs can be ascribed to the condition that persons with disabilities in the past and partly still today had or have to live in institutions. Though one might assume that there are differences today depending on the kind of impairment.

Issues which are not covered vastly indicate that they perhaps refer to quite particular forms of discrimination which are rather addressed on by disability-specific than cross-disability DPOs. An example for this is Article 12 ‘equal recognition before the law’. This Article does not affect all persons with disabilities to the same extent. As the table shows there are four cross-disability organisations (AEH, DPI-E, EDF, ENIL) alongside five disability-specific organisations (EBU, EDSA, ENUSP, IE, MHE) to address this issue. Those disability-specific organisations that address the mentioned Article first and foremost represent persons with psychosocial or intellectual disabilities (except for EBU) – a group of persons who are often denied legal capacity. Another example is Article 15 ‘freedom from torture or cruel, inhuman or degrading treatment or punishment’ which is only covered by three DPOs. Apart from one cross-disability DPO, the remaining two DPOs are representing persons with psycho-social difficulties which are at a higher risk to be subject to forced treatment.

16 We just want to use the table as an instrument to reflect general trends rather than pointing out single issues.

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One could assume that the focus on certain issues also depends on the demand for self-representation within a DPO. Although we are deeply interested in the differences of the emphasis of certain issues with regard to the question if the DPOs are rather DPOs of or DPOs for persons with disabilities, we are not able at the current stage of research to classify the DPOs with regard to this question, partly due to the fact that the statutes do not provide sufficient information on this topic. Nevertheless, we assume that there are differences between DPOs of and DPOs for persons with disabilities and the issues they focus on.

As we are further interested in the impact of the CRPD and the processes of Internationalisation, this aspect will be taken up in the following chapter. It should be noted that nearly all the DPOs of our sample refer to the CRPD in general and partly also to specific Articles. As regards the convergence of issues among the DPOs initiated by the new opportunity structure CRPD some of the experts we interviewed state that the convention did not provoke a big change in their programmes as many of them had been part of the process of drafting the CRPD and therefore already before were guided by a rights-based approach.

Conclusively, we will just briefly hint to an aspect which requires deeper investigation and probably will be covered in the course of our ongoing research. This aspect relates to the often mentioned relation between opportunity structures and framing processes, already investigated by other authors (Princen & Kerremans, 2008; Ruzza, 2004). Especially if we take a closer look on the interview material, the choice of certain issues and how they are framed can be reconstructed more easily. We just would like to take the example of EDF’s focus on accessibility and how they frame this issue. It is described in one interview that EDF uses the issue of accessibility in a broad sense by referring to various Articles and not only with regard to Article 9, CRPD (EDF_1). This focus on the issue of accessibility is furthermore explained by pointing to the opportunity structures the EU offers. As we already described, the ratification of the CRPD by the EU is based on the Code of Conduct in which the competences of the EU with regard to the implementation of the CRPD are codified. In the interview with EDF the use of this opportunity structure is explained as follows: “[…] for accessibility there has been like a big priority and the reason is […] that we have more possibilities at the EU level to have an impact on that” (EDF_1). This example shows quite clearly how the structures can have an impact on the practices and how the practices in turn also can have an impact on the structures, by framing the issue in a specific manner and thereby achieving impact on the structure by modifying the areas of competences.

We have elaborated on the choice of issues as one crucial part of the practices. Next, we will consider the activities of supra-national DPOs. For this analysis, we will discuss the actual use and

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qualification of European opportunity structures as well as the relevance and impact of the CRPD for the activities.

6.3.2. European DPOs’ Activities

In chapter 6.1, we presented a variety of important opportunity structures at the European level. In the following, we will investigate which of the 14 European DPOs represented in our sample make use of these structures. Afterwards, we present our findings on activities as they were described in the expert interviews. The interviews showed a broad range that was not only related to European structures, but extended to the relation between the DPOs’ activities and the CRPD.

6.3.2.1. The Level of the European Union

European Commission

As outlined earlier, the European Commission is the central arena for DPOs to address their agendas. It financially supports a variety of NGOs, including seven DPOs of our sample, and a number of EU level advocacy coalitions (including the European Social Platform, the European Patients Forum and the European Coalition for Community Living). Furthermore, its DGs have established various expert groups. Table 8 lists the sample of 14 European DPOs and the three presented advocacy coalitions with their participation in Commission Expert Groups. We highlight the six selected Expert Groups which we identified as relevant for this study in chapter 6.1 (marked in bold).

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Figure 4 illustrates the membership structure of the six Commission Expert Groups identified as relevant for this study (the High Level Group on Disability, the European Expert Group on the Transition from Institutional to Community Based Care [EEG Community Based Care], the Structured Dialogue with European Structural and Investment Funds' partners group of experts [ESIF SD], the EU Stakeholders for the platform against poverty [Stakeholders against poverty],

Table 8: Actual Use of the European Opportunity Structures

Organisation Participation in Commission Expert Groups Amount Name of (active) EEG(s)

1 AEH none 2 DPI-E none 3 EAMDA none 4 EASPD 3 High Level Group on Disability; European Expert Group on the Transition

from Institutional to Community Based Care; Structured Dialogue with European Structural and Investment Funds' partners group of experts

5 EBU 1 Consultative Group of Stakeholders on Air Passenger Rights 6 EDF 8 High Level Group on Disability; Expert Group on Online Dispute Resolution; EU

Stakeholders for the platform against poverty; Working Group on Motor Vehicles; Expert group dialogue on the use of sex as an actuarial factor; Consultative Group of Stakeholders on Air Passenger Rights; European Multi-Stakeholders Platform on ICT Standardisation; European Expert Group on the Transition from Institutional to Community Based Care; Structured Dialogue with European Structural and Investment Funds' partners group of experts

7 EDSA none 8 ENIL 1 Structured Dialogue with European Structural and Investment Funds'

partners group of experts 9 ENUSP none 10 FIMITIC none 11 IE 2 European Expert Group on the Transition from Institutional to Community

Based Care; EU Stakeholders for the platform against poverty 12 IF SBH none 13 MHE 3 EU Health Forum; European Expert Group on the Transition from

Institutional to Community Based Care; EU Stakeholders for the platform against poverty

14 RI none Advocacy

Coalitions

ESP 3 EU Stakeholders for the platform against poverty ; Groupe d'experts de la Commission sur l'entrepreneuriat social; Structured Dialogue with European Structural and Investment Funds' partners group of experts

EPF 6 High Level Group on Health Services and Medical Care; Expert group on Corporate Responsibility in the field of Pharmaceuticals; European workforce for health expert group; EU Patient Safety & Quality of Care Expert Group; Medical Devices Experts Group; EU Health Forum

ECCL 1 European Expert Group on the Transition from Institutional to Community Based Care

Source of data: Register of Commission Expert Groups

http://ec.europa.eu/transparency/regexpert/

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Consultative Group of Stakeholders on Air Passenger Rights [APRCG] and the EU Health Forum [EU HPF]) with regard to our sample and its coalitions. DPOs which receive Commission funding are marked blue in this illustration:

Figure 4: Involvement in EEGs and Advocacy Coalitions

What emerges from these findings? EDF clearly possesses the highest rate of direct connections to the consultation and participation process via Commission Expert Groups. While it is member of eight EEGs in total, it covers five of our six selected EEGs. EDF is followed by MHE and EASPD which are each represented in three EEGs (in total and with regard to the six selected EEGs). Inclusion Europe is member of two Expert Groups (both, in total and with regard to the six selected EEGs) and EBU and ENIL are members of one EEG (in total and with regard to the six selected EEGs).

Who profits most from forming coalitions? Since EDF is member of a number of advocacy coalitions, one can clearly discern the extent to which EDF profits from this activity. While it is

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represented in a variety of EEGs on its own, it exceedingly enjoys indirect participation in further EEGs through its membership in advocacy coalitions (such as EPF which maintains membership status in six EEGs in total). But also DPOs which do not receive any Commission funding can benefit from cooperation in advocacy coalitions (such as ENUSP, EAMDA and RI). We assume that those DPOs with only limited financial resources tend to participate by means of these coalitions which, as in the case of EPF, are financially supported by the Commission. In fact, with reference to the European Social Platform, it has been pointed out that the Commission has actively worked towards the unification of social NGOs in order to structure the dialogue with the pluralistic and often disparately aligned third sector (confer Cullen, 2010). It is further obvious that organisations which receive Commission subsidies also tend to be admitted to its Expert Groups. This is the case for almost all of the DPOs which receive Commission funding. In contrast, IF SBH is the only DPO which receives Commission funding but does not participate in any Expert Group.

European Parliament

Six European DPOs are registered in the EC Transparency Register: EASPD, EBU, EDF, ENIL, IF SBH and MHE. They have thus gained simplified access to the EP building. This begs the question if and how they make use of this privilege. As elaborated earlier, it remains questionable whether simplified access to the EP building really enhances effective lobbying. Unfortunately, the expert interviews have not shed much light on this question.

However, when asked to evaluate the work of the Disability Intergroup, a representative from EDF reports that “(…) addressing specific committees is sometimes more effective than working through the intergroup. Or addressing individual MEPs that are particularly involved in some issue, but as an Intergroup, I think that there are some problems in the functioning of the intergroup.” (EDF_2). The interviewee thus concedes that EDF’s participation in the Disability Intergroup has not always been very fruitful which is why EDF has taken up to approach specific EP committees respectively individual MEPs.

6.3.2.2. The Level of the Council of Europe

Since our focus is on the opportunity structures provided by the polity system of the European Union, we do not go into detail regarding the participation opportunities within the Council of Europe. However, during our research, collaboration with the Council of Europe has repeatedly emerged as an alternative opportunity structure for European DPOs. In 2014, five DPOs of our

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sample are entitled to submit collective complaints within the Governmental Committee of the European Social Charter and the European Code of Social Security: AEH, EDF, IE, MHE, RI (Secreteriat General of the Council of Europe, 2014).

AEH is the only DPO of our sample which has actually lodged a collective complaint (Council of Europe, 2014). This is striking since, as evident from figure 4, AEH is barely active at the level of the European Union. Interestingly, the interview with a representative from AEH reveals that in contrast to EDF with its focus on EU politics, AEH has at some point decided to concentrate on advocacy activities within the Council of Europe and has thus established stronger connections to the Council of Europe “because you cannot be everywhere” (AEH). Asked about this setting of priorities, the interview person qualifies the opportunity structures within the European Union as rather “consultative” whereas within the Council of Europe, AEH has “direct access to the Committee of Ministers and to measures, even binding measures that are taken by the Committee of Ministers” (AEH).

6.3.2.3. Further Assessment on Activities of Supra-National DPOs

Now that we analysed the use of the opportunity structures at the European level, subsequently we will take up some findings we got by means of the expert interviews in order to further qualify their use. As the analysis of interviews is still on-going, here we can only present a broad picture that could possibly lead to inputs for a more systematic typology of activity profiles in the future.

The desk research revealed that web resources and especially websites are a crucial channel of offering information to the public. Most of the websites of DPOs provide access to information on campaigns and position papers, offer background information on general or specific issues of disability rights activism, the lives of persons with disabilities, etc. Therefore, disseminating positions, projects and issues seems to be a core activity of a considerable amount of DPOs.

When taking the interviews from our sample into account, we can trace remarkable differences among supra-national DPOs. One major aspect relates to the focus of their work as regards the implementation of the CRPD: While some organisations in their work put emphasis on activities at the European level (such as EDF, ENIL), for example in terms of cooperation with EU institutions or with campaigns, others take on a different role (for example EDSA). The latter function as a kind of coordinator of national members’ activities, focusing on national activities and contexts instead of concerted, coordinated projects that encompass campaigns or projects in all national members’ states. While campaigning is an activity that is not employed by all DPOs

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of our sample, we can state that campaigning is presented in several statements as a crucial activity. As reasons of not starting campaigns, some interview persons mention a lack of financial and personal resources (EDSA, DPI-E_2).

In interviews in which these aspects came to the fore, two subjects were discussed. First, some DPOs which do not receive regular funding at EU level seem to focus on exchange of best practice and of useful information, thus concentrating more on implementation practices at the national level. This means one could get the impression that at the European level their work regards mostly internal communication. Additionally, for less resourceful DPOs, participation in European projects and campaigns are alternatives for developing and starting campaigns autonomously, as funding is less problematic. While we cannot find this literally in the interviews, we logically infer that attitudes and issues of project coordinators and of participating DPOs have to overlap to a certain extent to make cooperation meaningful. The concern about the need to get funding via projects also seems to concern DPOs which are members of a world organisation or federation, as DPI-E also mentions this necessity to exert influence at the European level. In DPI-E’s case, this also has to be seen against the background that the international umbrella for DPI-E called DPI decided that the European region should be excluded from central funding. Instead, the budget was allocated to the developing regions (Hurst, 2005, p. 67). For the study of activities this means that opportunities to realise them have to be analysed with regard to internal processes within one organisation as well. This especially holds true when organisations at the European level are not supported via other kinds of funding, such as EU funding.

While further research is needed, it could be the case that this is also linked to the total number of members and staff of the supra-national DPO. For instance, in some interviews opportunities to start campaigns were related to obligations of representatives at the national level while at the same time, all their work at the European level is done on an honorary basis, which is pointed out as a limiting factor.

Some of the DPOs establish a range of activities at the European level that exceed the majority of our sample. EDF is very active at the European level, focusing on cooperation in many disability-related advocacy coalitions as well as with external civil society stakeholders, such as the European Women’s Lobby. As main activity, EDF emphasises lobbying, while it sees legal actions, such as supporting complaints, as a crucial activity:

“So I would say that at EU level, the most effective at the moment is the lobbying, but also the legal actions, we can do push more for legal actions at national level, because at EU level, it is very very difficult, there is

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not really a possibility for us to go to the Court of Justice, because associations cannot complain, […] I mean it is very complicated to bring an issue there.” (EDF_1)

Other significant activities of DPOs are monitoring (EDF) and conducting and disseminating alternative/shadow reports on the implementation of the CRPD (EDF, ENIL).

For EDF, as an organisation with the objective ‘to represent 80 million European citizens with disabilities’, one crucial activity is to promote dialogue between its member organisations:

“[W]e try […] really to favour the dialogue with the different organisations and also to be able to bring people together and also see that when there is a consensus also the impact on a policy level is higher, […] it doesn't mean that everybody has to agree or has to be absolutely together. But if there is a process […] of coordination, there is always more impact.” (EDF_1)

Setting up or taking a leading role in disability-related advocacy coalitions are other crucial activities, such as in the case of the ENIL’s leading role in the ECCL.

As regards differences, an interesting finding seems to be the orientation of DPOs with regard to the Council of Europe. While some organisations tend to work directly with the institutions of the EU, we got the impression that a part of European DPOs are more engaged with the Council of Europe. As our sample is not comprehensive, we cannot judge whether this is a general characteristic to group or typify supra-national DPOs. Interestingly, DPOs seem to judge the effective use of opportunity structures differently both with regard to the orientation to either engagement with the European Union or the Council of Europe but also with regard to different political levels:

“The EU signed up the CRPD, which means the EU has to show how it does implement the CRPD. In this way, the EU is experiencing difficulties […] The monitoring that the EU can do is the pressure, it is not more than a pressure. It is the states who are engaged and have to do with legally binding measures.” (AEH)

It is further stated in the interviews that active engagement with the EU or the Council of Europe depends on the respective status of the DPO (for instance as regards lodging collective complaints), as we already described in 6.2.1.

With regard to our research question, this is an important aspect. Predominant cooperation with the EU shows a more direct effect of the Internationalisation because activities of cooperation with the EU relate more directly to the CRPD. As the convention is legally binding for the EU, this results in efforts to demonstrate implementation effects. However, focusing on cooperation with the Council of Europe also indicates Internationalisation of disability politics. As we have explained earlier, the Council of Europe is also influenced by the CRPD regardless of the fact that

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it is not authorised to ratify the CRPD. For instance, the fact that the ECtHR has started to refer to the CRPD shows effects, for instance on activities as introducing collective complaints.

Moreover, we identified two organisations within our sample that share characteristics in contrast to the majority of other covered organisations. These characteristics, on basis of our current status of analysis, also seem to have an impact on the respective activities. The organisations of RI and IF SBH can be perceived as organisations that do not have a special focus at the European level as they are international organisations. Interestingly, these two organisations from our sample are focusing on issues such as the right to health, habilitation and rehabilitation and/or prevention. It is interesting that as regards the activity of cooperating and participating in networks, these organisations are fostering cooperation with medical- or health-related stakeholders. IF SBH stresses the importance of cooperation with doctors and professional expertise in the medical realm for their work, while RI mentioned memorandums of understanding, for instance with “ESPA, which is the European Society of Physical and Rehabilitation Medicine” (RI).

Having presented some preliminary insights into the activities of the DPOs by means of the expert interviews, we will now try to infer implications for the level of strategies.

6.3.3. European DPOs’ Strategies

As outlined before, we assume that the activities of DPOs at the European level are mostly related to conventional interest representation. In the following, we will qualify the activities on a continuum ranging from collaboration to conflict.

As our analysis of cooperation, membership and participation in networks already indicated, within the European context strategies of cooperation and collaboration are most prevalent – which are strategies that are typical of professional organisations. For instance, being asked about the range of stakeholders at the European level EDF is cooperating with, an EDF representative replied: “Very many! I think everyone you could think of.” (EDF_3)

Reflecting our heuristic of collaboration, cooperation, controversy and/or conflict, some of the activities cannot be categorised explicitly and exclusively to one dimension of strategies. Rather, these strategies could be seen on a continuum. For example with regard to the activity of awareness-raising, it depends very much on the attitudes of other stakeholders. To be more precise, the human rights approach has been established on official political grounds by means of the CRPD, so DPOs do not have to fight for legitimacy of awareness by means of harsh conflictual

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strategies. Rather, the need to raise awareness for the human rights approach is legitimised by the CRPD, as member states and the European Union have ratified the convention. Awareness-raising is a means to foster implementation against conservative attitudes of other stakeholders.

However, some organisations also employ strategies which within the continuum range on the part of controversy and conflict. Most prominently, EDF as well as ENIL (together with ECCL) make use of the activity of conducting alternative/shadow reports on the implementation at the European level which we consider as a rather controversy- or conflict-oriented strategy. EDF in this regard can be seen as a stakeholder uniting the positions of European DPOs through consultation with its member organisations as regards specific Articles of the CRPD. In contrast, the alternative report of ENIL focuses on their main issue of Independent Living (Article 19, CRPD). Both reports can be understood as critical position towards the official EU report.

Other strategies of controversy and conflict are employed with regard to two other aspects. First, EDF makes use of open critique on the functioning of political frameworks and institutions. For instance, in the interviews EDF criticises the lacking effectiveness of the EU monitoring framework until now. Second, EDF comments on diverging perceptions of the area of competence of the EU. In EDF’s view, in some cases the EU actually has competence despite the principle of subsidiarity, for example, on the standardisation of goods and services.

As regards ENIL, the Freedom Drive is a prominent example of unconventional action at the European level. As a public demonstration, the Freedom Drive represents a controversial or conflictual strategy to pursue political interests. The Freedom Drive is emblematic for the claims to make independent living a reality, confronting the European Union with the barriers and problems that prevent the realisation. For instance, at the 2011 Freedom Drive a “Proposal for a Resolution of the European Parliament on the effect of cuts in public spending on persons with disabilities in the European Union” was launched by ENIL (2011). This shows that providing different assessments and evaluations that are aiming to provoke controversy can be a significant strategy to change the perceptions of different political stakeholders. Nevertheless, a closer look at the Freedom Drive also makes visible that there are tendencies that conflictual strategies are accompanied by cooperative strategies, as stakeholders of the disability rights movement are regularly invited after the public demonstration for meetings with members of the European Parliament to discuss crucial issues, which indicates to a degree also cooperation.

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Figure 5: Continuum of Strategies of Supra-National Organisations

Leading role in advocacy coalitions Lobbying

Promoting dialogue between members

Freedom Drive Monitoring

Conducting alternative & shadow reports Legal action

« « « « « « « « « « « « Dissemination of information & awareness-raising » » » » » » » » » » » »

6.3.4. Conclusions

In this chapter we concentrated at the level of practices. For this purpose we split our analysis of the practices into three parts: issues, activities and strategies.

As regards the issues we compared the programmes of the DPOs belonging to our sample with respect to the Articles of the CRPD. Different priorities could be detected as well as certain common issues shared by all DPOs (such as equality, awareness-raising, accessibility, living independently and employment). The convergence between the claims of the DPOs and the Articles of the CRPD illustrate the importance of the CRPD as these issues can be framed in terms of legally binding claims now. This aspect certainly marks a difference and some DPOs in the interviews highlight that although certain issues already had been existent before the CRPD was launched, the CRPD now serves as a reference point to accentuate the legally binding status as well as common standards free of individual interpretation.

As concerns the activities we first analysed the actual use of opportunity structures given at the European level. The analysis showed that there is a tendency of a more intense use of opportunity structures at the EU level if the DPOs are financed by the PROGRESS programme. Therefore, internal (organisational) structures, in the sense of available resources, indeed seem to function as an interceding variable which affects the actual use of the external opportunity structures. Those DPOs which do not receive EU funding mostly remain outside of advocacy coalitions and expert groups. Some of the DPOs choose to rather focus their activities on the Council of Europe. They explain their choice with the restricted opportunity structures at the EU level which they regard as having a rather consultative status compared to direct access to binding measures within the CoE.

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Furthermore, we can see that the activities of DPOs reflect a manifold spectrum, ranging from political lobbying, to legal action, participation in projects or cooperation in advocacy coalitions. As many of the European DPOs are dependent on external funding, it partly explains their choice of strategies. Cooperation and collaboration are strategies which are a central pattern of the interview persons’ responses. A second possible reason why DPOs tend to concentrate on strategies of collaboration and cooperation could be related to their assessment of possible outcomes of their efforts to exert influence at the European level. After all, unconventional action is less visible at the European level, which is another possible reason why DPOs rather choose strategies of collaboration or cooperation. In addition, unconventional action might be perceived by supra-national DPOs as a strategy which has less potential to foster change as it remains less visible to the general public and national media.

6.4. The Impact and Implementation of the CRPD from the Perspective of Organisations

In the preceding sections of our empirical analysis, we focused on the Internationalisation of disability politics, providing insights into opportunity structures for, organisational structures and practices of supra-national DPOs at the European level. The idea behind this approach is that there is impact of the CRPD on the opportunities for these organisations as well as on their actual practices.

Up to this point, findings show that there has been an Internationalisation of disability politics, as the CRPD seems to change structures at the European level, for instance with regard to the CRPD monitoring framework. Internationalisation can also be traced in terms of practices, as the interviews show that all supra-national DPOs of our sample use CRPD Articles or the human rights approach as a point of reference when formulating claims. While our results do not show clear convergence of policies on DPOs’ political agendas, we can assume that next to other opportunity structures at the level of the EU and the CoE, the CRPD is an important framework that encompasses most issues supra-national DPOs raise at the European level, providing legitimacy to stakeholders’ claims and raising awareness.

To gain further insight into the impact of the CRPD at the European level, we come back to Article 29b, CRPD, to emphasise the importance of participation and codetermination of supra-national DPOs in disability politics. We asked the representatives of supra-national DPOs of our sample for their assessment of current structures at the European level, but also as regards the impact of

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the CRPD on opportunities for supra-national organisations. In the expert interviews, we also aimed at the perspective of supra-national organisations on their opportunities to influence and shape disability politics in general and by making use of the CRPD. Once again, we need to stress the interrelation between participatory opportunities of persons with disabilities and opportunities to participate for DPOs at the different political levels. In order to make Active Citizenship a reality in Europe, the participatory opportunities of supra-national DPOs to exert (political) influence therefore should be seen as crucial. In line with this argument, it came to the fore in the expert interviews that problems of implementation of the CRPD and its (lack of) impact at the European level are two overarching topics that representatives equally relate to. Therefore, we will first present crucial findings as regards the following research questions:

• What has been the impact of the CRPD on disability politics at the European level from a European stakeholder perspective?

• What are problems and barriers of implementation of the CRPD from a European stakeholder perspective?

When we asked the interview persons for their assessment of the most important changes in disability politics and with regard to disability policies, most interviewed representatives state that the CRPD has contributed to raising awareness of the human rights approach to disability:

“I think it's a greater focus on disability from a human rights perspective after the CRPD was conducted and adopted. That's the main outcome of the convention, but that perspective is very important because that gives also the drive for what is happening on different fields, like in accessibility, in habilitation, rehabilitation, work and employment […]” (RI).

This argument is also supported by the representative of ENIL who states that the CRPD increased awareness for specific policy issues (ENIL). Several representatives of EDF add that the CRPD has increased the recognition of the disability rights movement by policy makers at the European level:

“I think in the political discourse there have been a lot of changes. So people speak of the rights of persons with disabilities, which was not the case before. […] There is also more mainstreaming, I mean at the EU level […], […] for example the convention is a very good argument for us […] to speak with decision makers, in different policy areas […]. Before, we struggled more. We used non-discrimination, but this had a limitation, and the convention is really opening a lot of doors in that sense. So for me this is really the biggest change” (EDF_1).

Further, the character of the CRPD as a legal opportunity structure is stressed: “The appearance of the CRPD has profoundly changed and formalised our disability rights approach. We have a

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legally binding instrument in our hands” (EDF_3). One of the experts that represented DPI-E described the impact of the CRPD on DPOs as empowerment of organisations (DPI-E). Although the representative of EDSA is more pessimistic about the issue of empowering DPOs due to the relevance of lack of funding, the CRPD is called an “[…] international standard, an international rule you can refer to […]” (EDSA).

Another finding from the expert interviews is that the CRPD for some supra-national organisations increased possibilities to collaborate or cooperate, for instance with the United Nations bodies such as the Office of the United Nations High Commissioner for Human Rights (OHCHR) (ENIL) or with other European stakeholders, such as the European Society of Physical and Rehabilitational Medicine (RI).

As to issues, campaigns, philosophies or political programmes, the interview persons report varying degrees of change. EDF states that there have been changes to certain activities and/or campaigns, as some issues stated in the convention were taken up:

“I mean there was a continuation, but maybe there is a bit more attention on certain topics like independent living than there was. […] But I would say maybe legal capacity has been completely new, came with the convention. Probably the area where there was the greatest change.” (EDF_1)

An achievement is pointed out as regards the EU Structural Funds, as several regulations and the so-called third thematic conditionality have been successfully introduced to ensure that the CRPD is not violated with regard to allocation of funds (EDF_3).

Coming now to implementation problems, the interview material provided various perspectives. For instance, with regard to the Optional Protocol of the CRPD, a representative of EDF stated that the aim was to achieve a ratification by the European Union, and that this ratification is still an objective for EDF, involving cooperation with European institutions, to make sure the CRPD is considered “when drafting policies, legislations, programmes, regulations, whatever” (EDF_3). In contrast, the representative of AEH did not see a ratification of the Optional Protocol as realistic. The interview person is of the opinion that “it is the national laws that have to be changed” to foster change in favour of persons with disabilities (AEH). These statements exemplify that for all DPOs the question of implementation is prominent, while representatives’ assumptions of different organisations diverge with regard to the following question: What can actually be achieved at the European level of disability politics that also has relevance for the lives of persons with disabilities? Further, a representative of DPI-E highlights the relevance of cultural implementation of the CRPD and thus refers to society at large instead of employing a distinction between political

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levels or between policy makers and the general public (DPI-E). Most fundamentally, ENIL highlights that the CRPD has no weaknesses as such, but that a human rights convention always raises the question of interpretation and available knowledge on appropriate implementation (ENIL).

As regards critique on the functioning of political frameworks and institutions, some aspects have been mentioned earlier, but will be also listed here for a more comprehensive overview. Problems several representatives mentioned was the CRPD monitoring framework that up to today is not functioning effectively: EDF notes that it is not clear how the framework is meant to work, and even more fundamentally, that the EU Commission should not be part of the monitoring framework, as this would contradict the independence of the framework and would cause additional problems (EDF_2).

Furthermore, according to RI even on a global level monitoring also shows difficulties due to lacking resources:

“The weaknesses and problems at the moment is […] the monitoring system. There [are] too little resources brought into the CRPD Committee, so the national reports are waiting to be examined, and there’s a sort of a narrow gate when it comes to the monitoring, not the system, but the resources allocated for the system.” (RI)

Further remarks on the functioning of political frameworks and institutions regard collaboration with the respective Disability Intergroup (according to the legislature), which is characterised as problematic in the past (EDF_2). As regards statistics, it is mentioned that there is a lack of data on persons with disabilities, and especially with regard to a lack of consistent terminology and a lack of data on the social aspect of disability (EDF_2).

As a cross-cutting topic, the economic crisis is mentioned by EDF as a restricting factor: “[…] Unfortunately, this crisis is hindering the impact the CRPD should have” (EDF_2) as it has negative consequences for persons with disabilities and for organisations.

Foreshadowing to our next Deliverable, the interviews also revealed insights that are relevant for the analysis of the involvement of DPOs in the implementation of the CRPD. For instance, some problems mentioned were conservative strategies of implementing the CRPD by national governments (EDF_2), language barriers that restrict effective internal communication, exchange of materials and about campaigns between organisations in different countries and at different political levels (EDF_2), and the general lack of influence civil society has in certain European countries (EDF_1).

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These first insights provide useful information to bear in mind also for the additional “other informant interviews” that are planned for all Work Packages of DISCIT, as assessments by national experts on participatory opportunities, collaboration and cooperation, effective and progressive implementation of the CRPD as well as other structural issues could provide new knowledge to foster Active Citizenship for persons with disabilities and ensures that human rights of persons with disabilities are promoted and ensured.

For our research on the Internationalisation of disability politics, we can conclude that there have been effects at the European level. Nevertheless, the implementation process will have to continue for several decades and will strongly depend on a progressive and more effective way of implementation.

7. Conclusions

In this paper, our research focus was on the Internationalisation of disability politics at the European level with regard to the CRPD. Related to this issue, our aim was to investigate how the CPRD has framed issues and affected activities of supra-national DPOs, and how these organisations make use of the CRPD to exert influence at the European level. For this study, we therefore reviewed opportunity structures of disability politics as well as organisational structures and practices of supra-national DPOs.

As regards the Internationalisation of disability politics we would first like to highlight some insights we gained on basis of the state of the research. The latter gave us first insights into the discussion on the possible ways of convergence of disability policies. As there is not much literature on the topic of Internationalisation of disability politics, we considered the relation of civil society and the European Union in general. This brought to the fore two aspects that were relevant for our approach. First, the European level offers a “new venue” for the civil society as regards participatory opportunities. Second, organisations at the European level seem to act differently compared to those at the national level.

The second aspect pointed to the necessity to revise the terminological specifications we developed in our first working paper. We clarified our terminology by considering the characteristics of disability rights activism at the European level.

Based on the framework of structuration theory and opportunity structures we first identified important opportunity structures at the European level. This was crucial to contextualise the impact

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of the CRPD as a new opportunity structure. At first glance one could get the impression that the CRPD has not (yet) had such a big impact at the level of structures since most of the European opportunity structures have already existed before the emergence of the CRPD. Nonetheless, its influence cannot be neglected. As became clear in the context of the Council of Europe, the CRPD shows indirect impact although the convention is not legally binding for the CoE. Therefore, not only at the level of the EU as contracting party, but also with regard to the CoE, the CRPD had and has an impact on political opportunity structures, which in turn might facilitate the involvement of supra-national DPOs to have an impact on the use of the CRPD. With regard to the question of ‘openness’ of the political institutions at the European level we have shown the requirements which enable supra-national DPOs to be part of the policy process to pursue their interests. However, the actual use of the available opportunity structures is dependent on further variables, such as the internal structures of an organisation. Therefore, not all DPOs of our sample are equally capable to make use of these opportunities.

The findings reveal that some of the organisations were able to enter this field and to establish themselves as important stakeholders within disability politics. Other organisations have not been able to benefit from the openness the opportunity structures offer. This could partly be due to differing organisational structures, in particular to lack of funding and resources. In this respect, the cooperation in advocacy coalitions has appeared to be one way of compensating a lack of participatory opportunities. Therefore, we can conclude that Internationalisation of disability politics does not affect all stakeholders in the same way, as some stakeholders are able to work with the CRPD at the European level to a greater extent than others. Our research further showed that the field of supra-national DPOs is versatile and dynamic which offers a lot of links for further research.

In accordance with our framework of structuration theory, not only the external structures (opportunity structures at the European level) as well as the organisational structures were taken into account but also the other side of the coin, i.e. the practices which we considered by focusing on three different dimensions: issues, activities and strategies.

With regard to the issues, it turned out that the CRPD has not really changed the issues the DPOs advocate for. Rather, the CRPD has the function of providing a legal basis as well as a certain standard free of individual interpretation. Using the CRPD as a reference further can be seen as an instrument to gain political legitimacy. We have demonstrated that the DPOs from our sample refer to the CRPD respectively to certain Articles of the CRPD when elaborating on their claims.

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The CRPD therefore is a framework of reference that influences the ways DPOs express their claims, as DPOs’ interests are now part of a human rights convention.

As regards activities, we concentrated on two aspects: The actual use of the opportunity structures given at the European level and the impact of the CRPD. For the use of opportunity structures we could show that not all DPOs of our sample make use of the same structures. While some organisations are strongly involved with political institutions of the EU, others prefer to turn to the CoE for advocating the rights and interests of persons with disabilities. Some even remain excluded from both apparently due to a lack of resources. The qualification of the opportunity structures with regard to the CRPD shows that there is a variety of activities that supra-national DPOs employ in this respect. Those organisations which tend to work more with institutions of the European Union make use of the CRPD, while our sample showed that organisations which focus on cooperation with the CoE use the CRPD as a secondary point of reference.

From the activities we can infer implications for our analysis of strategies. Our findings brought to the fore that most activities can be related to conventional interest representation as an expression of strategies of collaboration and cooperation. In contrast, strategies of controversy and conflict are less prominent. Legal action and conducting alternative reports are important exceptions.

Coming back to the assessment of the Internationalisation of disability politics, we further presented findings from the conducted expert interviews with regard to the impact of the CRPD and its implementation. Representatives of supra-national DPOs highlighted the fact that the CRPD has a significant function to raise awareness, both among policy-makers and in general. The CRPD therefore has to be implemented not only legally and politically, but also the cultural implementation of the CRPD is necessary.

However, our findings also indicate that there are significant problems that hinder the effective implementation of the CRPD at the European level. The issue of implementation will be taken up in our next Deliverable 9.3 on the involvement of national DPOs in the implementation of the CRPD. This will give us important insights on the impact of the CRPD at the national level to promote and ensure that persons with disabilities can fully participate in society and achieve Active Citizenship.

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8. List of Tables

TABLE 1: IMPORTANT STEPS AND DEVELOPMENTS TOWARDS INTERNATIONALISATION OF DISABILITY POLITICS AND DISABILITY RIGHTS

ACTIVISM .............................................................................................................................................................. 24 TABLE 2: SAMPLE OF ORGANISATIONS FOR EXPERT INTERVIEWS & DATA COLLECTION ................................................................... 31 TABLE 3: CURRENT STATE OF CONDUCTED EXPERT INTERVIEWS IN ALPHABETICAL ORDER OF ACRONYMS .......................................... 35 TABLE 4: OPPORTUNITY STRUCTURES AT THE EUROPEAN LEVEL ................................................................................................. 43 TABLE 5: TARGET GROUPS, LEGAL STATUS AND YEAR OF FOUNDATION ....................................................................................... 45 TABLE 6: FINANCIAL SUPPORT WITH RESOURCES FROM THE PROGRESS PROGRAMME ................................................................. 47 TABLE 7: ISSUES ADDRESSED WITH REGARD TO THE CRPD (ARTICLES 5-32) ................................................................................ 54 TABLE 8: ACTUAL USE OF THE EUROPEAN OPPORTUNITY STRUCTURES ........................................................................................ 59

9. List of Figures

FIGURE 1: ANALYTICAL DIMENSIONS OF STRUCTURATION THEORY ............................................................................................. 21 FIGURE 2: ANALYTICAL FRAMEWORK FOR THE ANALYSIS OF EUROPEAN DISABILITY RIGHTS ACTIVISM ............................................... 28 FIGURE 3: EU LEVEL ADVOCACY COALITIONS ......................................................................................................................... 51 FIGURE 4: INVOLVEMENT IN EEGS AND ADVOCACY COALITIONS ................................................................................................ 60 FIGURE 5: CONTINUUM OF STRATEGIES OF SUPRA-NATIONAL ORGANISATIONS ............................................................................ 67

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