Service Providers' Perceptions of The

Just like everyone else? Service providers’ perceptions of the religiosity of people with intellectual disabilities.

Dmitry Lukash

Dissertation Submitted in Partial Fulfilment of the Requirements for the Degree of Philosophiae Doctor (Ph.D.)

VID Specialized University

2020 © Dmitry Lukash, 2020

ISBN: 978-82-93490-71-5 ISSN: 2535-3071

Dissertation Series for the Degree of Philosophiae Doctor (Ph.D.) at VID Specialized University, Volume no 24

Cover: Dinamo

Printed in Norway: Totaltrykk, Oslo 2020.

VID Specialized University [email protected] www.vid.no

Contents

Foreword...... 5 Terminology...... 7 1. Introduction...... 8 1.0. Research topic and questions...... 8 1.1. Project’s special character: Religion, disability, or service research? ...... 9 1.2. Project’s relevance...... 10 2. Review of the field of research...... 11 2.1. Religious/spiritual needs of people with ID...... 12 2.2. Religion, spirituality, and social work...... 13 2.3. Conclusion...... 16 3. Epistemological issues...... 17 3.1. Phenomenological foundations ...... 17 3.2. Hermeneutical foundations...... 19 4. Theory in context...... 23 4.1. Place of theory in this research project...... 23 4.2. Theoretical approaches to disability ...... 24 4.3. Theoretical approaches to religion...... 33 4.4. Disability, human rights, and citizenship...... 36 5. Context...... 41 5.1. Religion in contemporary Norway...... 41 5.2. Norwegian policy towards people with ID—a short historical outline...... 44 5.3. Living conditions of people with ID during the HVPU reform and after...... 47 5.4. Norwegian policy towards people with ID—current documents...... 49 6. Intellectual disability and religion: ethical and legal issues...... 52 6.1. Religion and international disability rights: Standard Rules on the Equalization of Opportunities for Persons with Disabilities and the Convention on the Rights of Persons with Disabilities...... 53 6.2. Church of Norway and intellectual disability: Attitudes and policies...... 55 6.3. National and global ethical principles and guidelines for social workers...... 59 6.4. Place of religion in social and welfare service workers’ education curricula...... 61 7. Research methodology and ethical reflections...... 65 7.1. Method of focus group interview...... 65

7.2. Sampling process...... 67 7.3. Recruitment of informants...... 69 7.4. Interview structure and interview guide...... 69 7.5. Descriptions of the locations and reflections on interview situations...... 71 7.5.1. General considerations...... 71 7.5.2. Location 1...... 72 7.5.3. Location 2...... 73 7.5.4. Location 3...... 74 7.5.5. Location 4...... 75 7.6. Procedures of analysis ...... 75 7.6.1. Methodological approach: Induction, deduction, or abduction? ...... 76 7.6.2. Transcription...... 77 7.6.3. Processing the data...... 78 7.6.4. Interpreting the data...... 80 7.7. Ethical issues...... 82 8. Analysis...... 86 8.1. Practicing religion...... 86 8.1.1. Collaboration with religious organizations and institutions...... 87 8.1.2. Celebration of holidays and other activities...... 89 8.1.3. The role of relatives and family members in users’ religious practices...... 92 8.1.4. Summary...... 93 8.2. Staff members’ attitudes towards religion...... 93 8.3. Staff members at work: Views of professional practice...... 96 8.3.1. Staff members’ views of themselves as professionals encountering religion...... 96 8.3.2. Staff members’ views and ways of safeguarding users’ religious freedom ...... 104 8.3.3. Summary...... 118 8.4. Staff members’ views of users’ religiosity...... 119 8.4.1. Do users have religious needs? ...... 119 8.4.2. Religiosity and (intellectual) ability: religion and/or culture...... 120 8.4.3. Emphasizing the social dimension...... 125 8.4.4. Religious significance of loss, grief and feeling of security...... 132 8.4.5. Perceptions and reality...... 136 8.4.6. Summary...... 138 9. Discussion...... 139 9.1. Religious citizenship as a relevant framework for interpretation...... 139 9.2. Religion in professional practice: an overlooked issue?...... 142

9.3. Users’ religious rights and freedoms: acknowledged and implemented? ...... 144 9.4. People with ID as religious people, religious subjects, and religious citizens...... 147 10. Conclusion...... 152 11.Possibilities for future research...... 154 12. Literature...... 156 Appendices...... 169 Appendix 1. Response regarding notification about processing of personal data—NSD Data Protection Services...... 170 Appendix 2. Request for participation in a research project (in Norwegian)...... 175 Bakgrunn og formål...... 176 Hva innebærer deltakelse i studien? ...... 176 Appendix 3. Interview guide – topics for focus groups (in Norwegian)...... 178

Foreword.

This dissertation, as well as the research project of which it is a part, represents a somewhat unexpected turn in my academic career. I undertook my master’s studies in religion and society, specializing in the issues of religion and identity, while my bachelor’s studies had been in philosophy and theology. Within the world of academia, I would therefore identify myself primarily as a student of religion. At the same time, I have worked with people with intellectual disabilities for several years. Thus, through this research project, I have discovered fields of knowledge and inquiry previously unfamiliar to me. I would therefore say that, for me, my work on this project and thesis has been a profound educational and developmental process— a part of that profound mode of human being-in-the-world called Bildung in German and dannelse in Norwegian. From this perspective, this work has been highly productive for me. I hope that it will be equally productive for both the enhancement of knowledge and the benefit of society. In particular, I hope that this work will serve people with intellectual disabilities in the realization of their human rights and their empowerment as co-citizens.

I would like to thank, first of all, my supervisor, Professor Inger Marie Lid at VID Specialized University. Without her caring support and guidance—academically, socially, and personally— this work would have been impossible to accomplish. I would also like to thank my co- supervisor, Associate Professor Anita Gjermestad, for her warm and caring support and presence during this tough academic journey. I thank them wholeheartedly.

This dissertation is an outcome of my research fellowship at the Centre for Mission and Global Studies (SMG) at VID Stavanger. Therefore, I would like to wholeheartedly thank the head of the Centre, Professor Anna Rebecca Solevåg, for all the support and care she provided during my work on this thesis. Without her kindness, this project would be unimaginable.

I would also like to thank all my colleagues at the Centre, VID Stavanger, and VID Sandnes— from the administrative staff to the teachers and students—for being exceptionally good colleagues, supporters, and friends. I would especially like to thank my colleagues Signe Aarvik, Ingrid Løland, Øyvind Hadland, Joanna Bauer, Thokozile Phiri, Mariella Asikanius, and Zo Ramiandra Rakotoarison from the Centre, and Anna Chalachanová, Kristina Hoydal, and Kjersti Velde Helgøy from the Centre of Diaconia and Professional Practice (and many others I have not named) for their friendship and support.

I spent two of the almost three and a half years of my work on this dissertation at Diakonhjemmet, one of VID’s campuses in Oslo. I would thus also like to thank Associate Professor Oddgeir Synnes and Professor Hans Stifoss-Hanssen for their hospitality, cordiality, and support.

During my work on this dissertation, it was a privilege to have been a part of Research School Religion-Values-Society (RVS). I am grateful to have participated in RVS’s annual Metochi Summer School in August 2017, as well as the other courses, conferences, and seminars that it arranged. Through my participation at the School, I gained a great deal of knowledge and new perspectives about what it means to be a researcher, as well as many wonderful friends from all over the world. As such, I want to thank RVS’s director, Professor Geir Afdal (MF Norwegian School of Theology), and RVS’s coordinator, Gina Lende (MF Norwegian School of Theology), as well as the school’s staff, for their warmth, kind support, and generosity.

Finally, I would like to thank my wife and colleague, Christine Myrdal Lukash, for her loving presence, care, and support during this long journey. My thoughts go also to my children, Aurora, Edvard, and Aleksander, as well as to my parents, Galina Borisova and Aleksandr Lukash. Thank you all for being there.

Terminology.

In this dissertation, I use a number of terms and concepts that require clarification. This is especially true regarding Norwegian terms for professions and institutions, which are often difficult to adequately translate into English. Some of them, such as vernepleier (social educator) and bofellesskap (shared accommodation) have established English translations. With other terms, however, I encountered difficulties. In the text that follows, I therefore always provide the original Norwegian term following its English translation—for example, “child welfare officer (barnevernspedagog).”

Sometimes, however, for the sake of simplicity, I use less technical terms then those existing in the literature. For example, the main form of accommodation for people with ID in Norway is bofellesskap, which is usually translated as “shared accommodation” in the literature I examined. At the same time, the more vernacular term bolig is often used in Norway in relation to this type of accommodation. As such, I use a translation of bolig—i.e. “residential home”— in this dissertation.

To avoid overuse of the precise but somewhat clumsy term, “people with ID,” as well as to emphasize their role as residents in the shared accommodations and users of the day center where I conducted focus groups, I use a number of other terms. Speaking about people with ID in general, I use the term “service receiver” or “user” (bruker in Norwegian), while when referring to those who live in shared accommodation, I use “service receiver,” “service user,” or “resident” (beboer in Norwegian).

The general names for care workers whose views and attitudes are explored in this study are “staff”, “staff members” or “service providers.” When mentioned as participants of the focus groups, they are called “informants” and “participants.” These names should be understood as interchangeable.

1. Introduction.

1.0. Research topic and questions.

The aim of this research project was to explore perceptions of and ideas about the religiosity and religious practice of people with intellectual disabilities, as held by the social and healthcare workers who care for them in Norway’s residential homes and day centers. Thus, the scope of the project, as well as its object of analysis, includes not people with intellectual disabilities (ID) per se, but the service providers, both professionally trained and not. In other words, the aim of the project is not to find out how people with ID are living and practicing religion, but how these practices are reflected on and understood by the staff members. This means that I am not interested in answering whether the staff’s perceptions and ideas about the religiosity of people with ID are true, but rather how these ideas and perceptions can be understood within a broader social, cultural, and institutional context.

An important contextual factor is the institutional framework of the staff’s professional practice. As professionals, staff members are included in a set of norms and standards that govern their practice, whether or not they are aware of them. Here, international conventions, national legislation and policy, and ethical standards are important.

Professional education and training also play a role. It is reasonable to assume that the social education curriculum—social educator being the main profession in this field—and the place knowledge about religion occupies within that curriculum, affects both the awareness and attitudes of the staff.

Last, but not least, the societal and religious backgrounds of the staff hold considerable importance. As I will show, the knowledge of this background is indispensable for understanding the staff’s attitudes towards the religiosity of people with ID, how and to what extent the staff meet the religious needs of the users, and how they facilitate the users’ religious practice.

It is important to mention here that one of the central notions of this research is the consideration of people with ID as religious subjects, i.e. as persons with capacity for agency. This means that, in accordance with the internationally accepted rights of people with ID, reflected in such documents as the UN’s Standard Rules on the Equalization of Opportunities for Persons with

Disabilities (1993) and Convention on the Rights of Persons with Disabilities (2006), I insist on seeing them as actors in the religious field, and not merely objects of the religious concern of others. People with ID have rights and freedoms equal to non-intellectually disabled people, including the freedom of conscience and religion. This certainly implies that, along with the right to practice religion, people with ID have the right to abstain from it.

Bearing in mind the above, I now turn to the research questions of this project, of which the central one is: How do members of the staff at residential facilities and day centers understand and perceive the religiosity and religious practice of their users? I argue that, to answer this question, one must pose a number of secondary questions to concretize and clarify the main question by focusing on its most interesting aspects. These secondary questions are: - What significance has religion for service providers’ professional practice? - How are users’ religious freedom and their right to religious practice secured and taken care of by the staff? - Are people with ID perceived by their professional caregivers as religious subjects? If so, in what ways?

1.1. Project’s special character: Religion, disability, or service research?

The special character of this project lies in the fact that it cannot be easily placed within a definite academic field. On the one hand, it is clear that it is connected to the field of disability studies, itself broad and multidisciplinary. Indeed, knowledge about the perceptions held by the service providers about people with ID cannot be obtained without understanding the latter’s life situation. On the other hand, the focus of this research is not the life, thoughts, and practices of people with ID but rather others’ ideas about them—ideas that may or may not be correct.

At the same time, as the focus of this research is on perceptions about the religiosity of people with ID, it should definitely be placed within the field of religious studies—more precisely, within the sociology of religion. To understand staff members’ attitudes towards service users’ religious practice, one must be aware of the structures and forms of religiosity, as well as general attitudes towards it on a macro (i.e. national) level. It is clear that this research has a place within the social sciences, with religion as its main focus. However, having a background in religious studies myself, I see this project as consisting largely of research on religion.

In addition to the above, since social service professionals and their attitudes connected to their work are the subjects of this research, it could be argued that this project constitutes social work or social service research.

1.2. Project’s relevance.

The interdisciplinary character of this research project and its position at the intersection of three disciplines—namely religion, disability studies, and social work—mean that it can contribute to multiple fields. As my main scholarly interest lies within the field of religious studies, and since I consider religion one of the key topics of this thesis, I assume that this research will contribute to the study of religion in contemporary Europe, in general, and Scandinavia, in particular.

In addition, the project could also contribute to social work and social service research, particularly to research on social services for people with ID. I hope that it will also contribute to raising awareness among policy makers and professional caregivers about the religious needs, rights, and freedoms of people with ID.

2. Review of the field of research.

In this chapter, I will provide a brief overview of some of the literature relevant to this study.

This project is interdisciplinary and draws on several overlapping fields of research. Moreover, those fields—religion in modern society, disability and religion, disability rights, and social work, and healthcare—are themselves broad and complex, with enormous bodies of research. Therefore, I will provide an overview only of the most relevant issues: the religion (and spirituality) of people with ID, religion in connection with social work, healthcare ,and welfare professions, and attitudes towards the religiosity of people with ID. The aim of the chapter is thus only to outline the gap that this study aims to fill.

It is important to note that, in this chapter, I do not discuss research on disability, human rights, and professional practice that does not involve issues connected to religion and/or spirituality, even though I draw on it extensively in this study. I do, however, mention some of the studies that hold significance for this thesis later in the dissertation.

Moreover, while a systematic literature review is beyond the scope of this chapter, I have nevertheless followed certain procedures to target the most relevant research. First, I have searched the EBSCOhost database, using the following key words and phrases in different contexts and combinations: religion, people with intellectual and developmental disability, perceptions and attitudes and beliefs and opinions, staff, social work, Scandinavia, and Norway. In addition, seeking Norwegian language publications, I conducted searches in the EBSCOhost database, Google Scholar, Idunn.no (the Norwegian database for academic journals and open- access books), and Fontene Forskning (the online edition of the leading Norwegian academic journal for social work, social education, and child welfare). In this search, the key words used were: religion, religiøsitet, mennesker med psykisk utviklingshemming, åndelige behov, and religionsfrihet.

Finally, I searched through the main journal in the field of disability and religion, the Journal of Disability & Religion (before 2014: Journal of Religion, Disability & Health; between 1994 and 1998: Journal of Religion, Disability & Rehabilitation), as well as another leading journal, Disability and Society. I also drew on prior literature reviews in these fields: namely, Sango and Forrester-Jones’s (2017) review of religion and/or spirituality and people with ID in the United States and the United Kingdom; Follestad’s (2009) review of spiritual care and

11 healthcare and social work; and Slocum’s (2016) review of the inclusion of people with ID in faith communities.

It should be noted that I looked only at literature in English and Norwegian (and, to a lesser extent, other Nordic languages); I am aware that this choice poses limitations regarding the reviewed material, including the possible omission of a significant amount of relevant research published in other languages. Another consequence of this restriction is that the studies of people with ID in the United States and the United Kingdom are overrepresented.

2.1. Religious/spiritual needs of people with ID.

Although the past two decades have seen an increase in empirical investigation of the religiosity and religious needs of people with ID, this topic remains insufficiently researched (Swinton 2002, Shogren & Rye 2005). However, it is a growing field of inquiry that includes both qualitative and quantitative research, and has shown that religiosity and spirituality are among the essential needs of people with ID. For example, in their mixed-methods study of 41 persons with mild-to-moderate ID in the United States, Shogren and Rye (2005) found that they scored high on intrinsic religiosity, i.e. a religious attitude “motivated by their belief in the doctrine of their religion and/or belief system, and these beliefs permeate their entire life and greatly affect the way they live” (Shogren & Rye 2005). The authors also found that their informants and respondents used religious coping strategies.

In a qualitative study of 29 people with ID in the United Kingdom, Turner et al. (2004) found that many of them identified themselves as religious, could describe their faith clearly, and distinguished their faith and religious identity from that of others (Turner et al., 2004; Sango & Forrester-Jones, 2017). In another UK study, Swinton (2002), by combining individual interviews and focus groups, found that the majority of informants indicated deep spirituality and found security, meaning, acceptance, and love in their belief in God or a higher power (Swinton 2002; Sango & Forrester-Jones 2017). Similarly, interviewing 25 people with ID living in several residential homes in Oklahoma, in the United States, Minton and Dodder (2003) found that their informants enjoyed attending church and participating in religious activities. At the same time, their main motives for doing so appeared to be socializing, enjoying music, and attending Sunday school classes, where simple skills (e.g. the alphabet, numbers, colors, and shapes) were also taught (Minton & Dodder, 2003).

In a recent US study, Carter and Boehm (2019) examined the congregational activities and spiritual practices of young people (between 13 and 21 years of age) with ID, as reported by their parents. They found that a significant number participated in congregational activities as well as in a variety of spiritual practices at home (Carter & Boehm, 2019).

I have not found any systematic studies investigating religion or spirituality among people with ID in Norway, or in Nordic countries more generally. However, a number of textbooks and handbooks have been produced on this topic, both in Norway (Dahle & Torgauten, 2004; Torgauten, 2008; Dahle & Torgauten, 2010) and in Denmark (Jensen & Jorgensen, 1995).

Among these, I consider the anthology Intellectual Disability and Religious and World-View Practice (Utviklingshemning og tros- og livssynsutøvelse), edited by Sølvi Dahle and Tor Ivar Torgauten (2010), especially important. It is a comprehensive introductory work that takes up topics such as religion and care work for people with ID, gives an overview of their rights as religious practitioners (institutionalized both in international and national law and policy), and reviews strategies and methods for facilitating the religious practices of people with ID.

2.2. Religion, spirituality, and social work.

Research on various aspects of the relation between religion/spirituality and health and care work is growing (Canda & Furman, 2010)—for a comprehensive review of the research, see Ross (2006), and specific to Scandinavia, see Ødbehr et al. (2012); Rykkje et al. (2013); and Hvidt et al. (2018). This body of work includes studies of professionals’ and future professionals’ perspectives on spiritual care (Oxhandler & Pargament, 2014; Ross et al., 2013; Giske & Cone, 2011; Torskenæs et al., 2015).

Among the research with special relevance for this project is a national study of the attitudes towards religion and spirituality among Norwegian social educators and social workers (Zahl & Furman, 2005), as well as several quantitative studies that compare their attitudes with those of colleagues in the United Kingdom (Zahl et al., 2007) and the United States (Vetvik et al., 2018). These studies show that Norwegian social workers are less accepting of religion and spirituality than their non-Norwegian colleagues.

At the same time, most (if not all) of this research does not cover professionals working with people with ID. Therefore, I have had to rely heavily on “grey” literature, i.e. research not

13 published in peer-reviewed publications. One important example of such literature that I draw on is a comprehensive study by Einar Vetvik (2016). An unpublished report of a research project, it draws on previous research (including Zahl et al. (2005) and Zahl et al. (2007)) and provides a detailed examination of Norwegian social workers’ attitudes towards religion and spirituality, including the role these issues play in their education and professional practice. It also brings in additional material, such as the presence of issues connected to religion and spirituality in textbooks used by Norwegian social work students.

The results point to an overwhelming agreement among the study’s respondents around the importance of these issues in human life, while also specifying a somewhat restrictive view towards the inclusion of religion and/or spirituality in respondents’ professional practice. According to the author, the factors that contribute to the positive attitude and practice towards inclusion are the respondents’ own religiosity, religious practice, and experiences meeting those issues in their care work.

While the above-mentioned studies are highly important for our knowledge of Norwegian social and care workers’ general attitudes towards religion and spirituality, professionals working specifically with people with ID are minimally (if at all) represented in the studies’ samples. For example, in her (2002) study, Zahl used a sample of members of the Norwegian Union of Social Educators and Social Workers (FO), which organizes a broad range of professionals employed in mental health, counseling, and other fields of social work (Zahl et al., 2005; Zahl et al., 2007). As professionals working with people with ID are included in this grouping, it is impossible to know the precise number represented in this sample—and in those of subsequent comparative studies. Vetvik (2016), on the other hand, does specify respondents’ professions, but among 134 of his respondents, only 9 (7%) work with people with disabilities (funksjonshemmede); it is still unknown, therefore, how many of them work specifically with people with ID. As such, none of these projects precisely address the issue that I am examining in this study. Neverthess, Vetvik’s study appears to be closest to the topic of my research; as such, and because of its scope and thoroughness, I consider it both highly interesting and valuable.

I was also only able to find a few studies that directly reflect on the central topic of this thesis, namely service providers’ attitudes towards people with ID, and that examine Norway in particular. All are unpublished student theses and thus, like Vetvik’s study, “grey literature.” Among these, I found Ulland’s (2013) work particularly relevant. Though only a thesis written

14 for a bachelor’s degree in social education, this study can be seen both as pioneering research on this topic in Norway and as a model for my research. The study’s central research question— “What do some social educators think about taking care of the spiritual needs of people with ID?” (“Hva tenker enkelte vernepleiere om ivaretakelse av åndelige behov hos mennesker med utviklingshemming?”)—and its use of qualitative methods reflect striking parallels to my own study. The author conducted individual in-depth interviews with two social educators employed at different locations and professing different spiritual and world-views (ulikt åndelig ståsted eller livssyn) (Ulland, 2013). The interviews focused on the informants’ general views about spirituality, its significance in their professional life, and how they might create conditions for its growth among people with ID. Ulland concludes that, while her informants acknowledge the importance of a spiritual dimension in the lives of people with ID, problems with communication and self-expression among users and a lack of training among staff can impede the meeting of their spiritual needs (Ulland, 2013).

Looking abroad, more precisely towards the United Kingdom a noteworthy study connected to this topic was conducted by Narayanasamy et al. (2002) and examined how British nurses providing care for people with ID meet their spiritual needs. In this qualitative study, the authors employed the Critical Incident Technique and found that their informants were aware of their clients’ religious and spiritual needs, albeit in different ways. The authors distinguish between spiritual and religious needs, connecting spirituality with a broader personal quest for love and purpose (among other things), and religion to its organized forms. They categorized nurses’ approaches to clients’ religious and spiritual needs as personal, i.e. client-centered, counseling, holistic, and procedural. This last was identified as “religious in nature” and was connected to enabling clients to participate in religious services and other kinds of religious practice. The authors characterize this approach as contributing less to the identification of clients’ spiritual needs, because the informants with this approach appeared to be less individual-centered in their attitudes and more focused on a “generalized religious routine.” Narayanasamy et al. question “whether spiritual distress displayed in non-religious terms and expressions would receive any spiritual care interventions from certain disability nurses” (Narayanasamy et al., 2002, p.8).

The significance of the above-mentioned study is that Narayanasamy et al. addressed the perceptions and attitudes of disability professionals, rather than just the spiritual/religious needs of the people with ID. Although the study, in its distinguishing between spirituality and religion,

15 is more concerned with the former than the latter, it provides a strong background for my project, and as such should be mentioned here.

Two of the studies mentioned earlier that focus on the religious/spiritual needs of people with ID—namely Shogren and Rye (2005) and Minton and Dodder (2003)—also consider the attitudes of the service providers. Shogren and Rye asked 14 service providers about the effect of religion on the well-being of the people with ID they supported. The majority of informants reported having seen a positive effect, including a sense of peace, an enhancement of moral judgment, and a sense of community (Shogren & Rye 2005). Minton and Dodder, in their interviews with four residential home managers about whether they felt their residents were accepted in local churches, found the responses to be mostly negative (Minton & Dodder 2003).

2.3. Conclusion.

This brief review of the literature highlights several issues:

• Research on the religious and/or spiritual needs of people with ID is growing. However, empirical studies (as opposed to textbook-type literature) in this field in Norway are lacking. • On the other hand, research on the relationship between healthcare/psychosocial workers and religion/spirituality appears extensive, with some significant contributions from Norway. However, little in this body of work focuses specifically on professionals working with people with ID. • Research has also been conducted on attitudes towards the religiosity of people with ID among staff, managers, and church authorities (among others). However, very little of this research has focused specifically on the staff. In Norway, such research seems to be largely in its infancy.

The above issues seem to highlight the relevance and timeliness of this project.

3. Epistemological issues.

In this chapter, I will provide an overview of the philosophical foundations of qualitative methods in social research, specifically regarding aspects of their phenomenological and hermeneutical traditions. As this project is empirical, it may seem unnecessary to address such deep and general philosophical issues in this thesis. Indeed, as I will show, phenomenological traditions have long had a profound influence on ethnographically oriented research, while hermeneutics, understood as a broadly interpretative approach, are fundamental to any research endeavor focused on meaning; it may therefore seem obvious that a qualitative research project will draw on these two elements. Nevertheless, I discuss these approaches in this chapter because they provide both a foundation and a justification for my use of theory in this work.

3.1. Phenomenological foundations

Beginning with the work of Edmund Husserl, phenomenology has been a strongly influential philosophical tradition throughout the past century. Here, I will not provide a systematic and extensive outline of phenomenology, but instead reflect on select key notions, ideas, and concepts, and show in what way they might be considered important for qualitative social research.

The first of these is represented by what is arguably Husserl’s most well-known quote: “back to the things themselves,” which implies turning to the inner meaning of phenomena, bracketing both natural attitude, i.e. our presuppositions about them (eidetic reduction), as well as their ontological status (transcendental reduction) (Eberle, 2014). In the context of qualitative social research, we can use this notion as an appeal to seek the key meanings of the phenomena under study, instead of focusing on causal explanations. In other words, we should let the phenomenon, “the thing itself,” speak (Zahavi, 2014). To be sure, as I will emphasize later on, a knowing subject cannot be separated from her theoretical or pre-theoretical presuppositions. However, as will become clear from later discussions on method, a key aspect of qualitative research is to be able to let the data speak with their own voice.

This understanding also implies strong anti-reductionism, which is characteristic of the entire phenomenological tradition and robustly underpins the qualitative method (Zahavi, 2014). Indeed, the objects of qualitative research are meaningful social phenomena, which cannot be reduced to other aspects of reality. Neither can the phenomena of qualitative research be

17 reduced to a subject of causal explanation. For example, within the context of this research, disability cannot be fully understood by just referring to its biological, medical, or social– structural causes, but must be seen as an inherently meaningful phenomenon, understood on its own terms.

Another notion that I believe is significant for qualitative research is Martin Heidegger’s “being-in-the-world.” Used by Heidegger in his efforts within existential phenomenology to describe the essential mode of human existence, this concept has also held profound significance for epistemology, including that of the human sciences. It implies that a researcher, as a knowing subject, is inseparable from the social world she studies. In other words, this notion critiques the traditional epistemological dichotomy between subject and object of knowledge. Clearly, a qualitative researcher is not a passive recipient of knowledge, placed outside the social world she is investigating. On the contrary, our knowledge of the world, both as lay people and researchers, is always socially situated, whether we are positioned within the context of everyday life or the research setting.

The concept of being-in-the-world lies near to another notion rooted in a phenomenological tradition—namely, the concept of the life-world. This notion implies a certain prioritization of the lived, everyday experience over theoretically based, scientific knowledge. In other words, the latter is ultimately based on, and dependent on, the former (Zahavi, 2014). As the seminal French phenomenologist Maurice Merleau-Ponty phrased it, “All my knowledge of the world, even my scientific knowledge, is gained from my own particular point of view, or from some experience of the world without which the symbols of science would be meaningless” (Merleau-Ponty, 1962, quoted in Brinkmann & Kvale, 2016, p. 32).

The idea of the life-world is important for qualitative social research. On the one hand, this notion provides an approach to people’s common-sense knowledge about and basic experience of the world in which they live (Brinkmann & Kvale, 2016). On the other hand, it enables an understanding of the social world as an arena of intersubjective and relational meaning-making. As suggested by Alfred Schutz, German philosopher and leading theorist of phenomenology applied to social science research, people make meaning of and in the social world using their “stocks of knowledge at hand”—i.e. already available biographically acquired background knowledge of the world—in the context of different provinces of meaning (Schutz & Luckmann, 1973, p. 7). A researcher is also placed in her own province of meaning, drawing

18 on specific stocks of knowledge (e.g. past research) and systems of relevance (e.g. research questions, theoretical approaches) (Eberle, 2014).

The phenomenological approach to understanding the social world thus leads us to conceptualizing the latter as inherently meaningful, so to know it requires some kind of interpretation. Therefore, it is important in any qualitative inquiry to draw upon another tradition that, in its modern form, has been greatly inspired by phenomenology: namely, hermeneutics.

3.2. Hermeneutical foundations

Hermeneutics as a tradition embraces different perspectives and approaches. It developed out of reflections about and practices of the interpretation of the Scripture, literary, and legal texts, and took its more philosophical and epistemological form in the 19th century—especially in the works of Friedrich Schleiermacher and Wilhelm Dilthey. For the latter, the methods of the natural sciences and those of the humanities are radically different: while the former should be built on explanations of the causal relation between phenomena, the latter can only be pursued by empathy, “in-feeling” (Einfühlung) with other people’s inner world, or by studying the activity of the human psyche expressed in signs, i.e. text (Alvesson & Sköldberg, 2009). Historically, Dilthey’s attempt should be seen as part of the reaction against the rise of positivism at that time, and has parallels in the sharp dichotomization of natural and cultural (and, similarly, of nomothetic and ideographic) studies by such neo-Kantians as Heinrich Rickert and Wilhelm Windelband.

A new turn in philosophical hermeneutics was closely connected to and had indeed been part of the phenomenological tradition. The main intellectual contributors of this turn were the Germans Martin Heidegger and Hans-Georg Gadamer. The latter, in his magnum opus Truth and Method (1960), paradoxically denies the significance of hermeneutics as a distinctive method for the human sciences: drawing on Heidegger’s existential phenomenology, as well as on Husserl’s later notion of the life-world, Gadamer insists on a much more basic notion of understanding (Verstehen) as a fundamental way of human being-in-the-world (Malpas, 2018). Nevertheless, basic principles of the interpretative activity, as detailed in Truth and Method, should be considered essential for the pursuit of human sciences, in general, and qualitative social research, in particular.

Before turning to Gadamer, it is important to consider the significance of text and textual interpretation for social research. Interpretative activity is often connected with the understanding of texts. Indeed, in the more classical sense of the word, hermeneutics are often understood as a method of textual interpretation. In the case of our understanding of the social world, we do not necessary deal with written text—although, in the most qualitative research designs, the data being studied are expressed in textual form (Thagaard, 2010). At the same time, it could be argued that any system of signs can be seen as a text or a text analogue. Consider, for instance, that for a researcher, the basis of a qualitative interview is understanding an informant’s speech, i.e. verbal utterances. On the other hand, interpretative social science obviously goes beyond mere texts and text analogues, because making sense of any meaningful activity requires interpretation; this, in turn, makes certain key features, to which I will now turn, highly relevant.

According to Gadamer, we can understand a text only by projecting: As we begin to read the text, we project the meaning of the text as a whole. On the other side, however, to grasp the initial meaning of the text, we must have some expectations, or fore-projections, about the text (Gadamer, 2004). To have a fore-projection means to essentially have a prejudice about something. Gadamer is clear that understanding is impossible without pre-understanding; thus, we can think about the inevitability and even positivity of prejudice as “pre-judgement” (Malpas, 2016). Gadamer criticizes the Enlightenment for discrediting prejudice as something pre-judgmental, and, thus, irrational (Gadamer, 2004). However, all genuine research and understanding within the human sciences is, according to Gadamer, addressed and contextualized by tradition (Gadamer, 2004). The researcher’s situatedness within a tradition appears

in the significance of what is examined, [which] exists at the beginning of any such research as well as at the end: in choosing the theme to be investigated, awakening the desire to investigate, gaining a new problematic. (Gadamer, 2004, p. 283)

On the other hand, the acceptance of our preunderstanding and situatedness within the tradition does not mean that we should dogmatically follow it. On the contrary, our pre-judgements enable us to go further in the process of understanding in such a way that they themselves could be revised (Malpas, 2018).

Our understanding always occurs, according to Gadamer, within a horizon determined by our situatedness in history and tradition (Malpas, 2018). It is a perspective through which we see

20 the world. We cannot transcend our perspective; instead, in order to understand, we have to engage in the never-ending dialogue between the known and unknown (Malpas, 2018).

Now, as I have already mentioned, to understand the text as a whole we need to achieve an understanding of a part of it; however, we can only understand that part by understanding the whole. In the same way, we can say that to understand a text means a constant reworking of our initial projections (Gadamer, 2004). The process of understanding is thus a continuous shuttling between a part and the whole, on the one hand, and between pre-understanding and understanding, on the other.

Interpretation and understandings imply a fusion of horizons, i.e. that we as knowing subjects try to set ourselves into the horizon of the text. It implies that a proper understanding of meaningful material always happens in its context. Indeed, people who are producers of that meaning are themselves placed within their horizon, conditioned by their own pre- understanding.

Moreover, one can argue that text and context relate to each other as part and whole in the hermeneutical circle: to understand the text one needs to understand the context, just as to understand a part one needs to refer to the whole.

It is important to emphasize that these notions of a situated, perspective-bounded character of any understanding and knowledge resonate in different fields of contemporary epistemology and the philosophy of science. For instance, one can draw parallels between Gadamerian hermeneutics and Thomas Kuhn’s philosophy of natural science. Both currents of thought criticize the idea of the Enlightenment’s universal, detached, a-contextual subject, and insist on the immersion of a knowing subject into tradition, language, and community—cultural, historical, and/or scientific.1 That point has also been especially well understood by the different currents of critical theory, including the feminist epistemologists. To varying degrees, many of these have had critical notions of science as objective, value-neutral, detached, and unbiased activity (Anderson, 2020). For instance, the standpoint epistemology—both feminist and those more inspired by Marxism—claims that the perspective of systematically oppressed social groups has epistemic advantage over politically and socially contested topics (Anderson, 2020). This implies that, by virtue of being oppressed or marginalized, these groups—women, for instance, or persons with disabilities—have a better understanding than the privileged of the

1 It is worth noting that Gadamer’s Truth and Method was first published in 1960, three years before Kuhn’s magnum opus. 21 social phenomena that is causing their oppression and marginalization (Anderson, 2020). In addition, however, less epistemologically critical thinkers have also contributed significantly towards our understanding of knowledge as situated.

Here, I summarize select elements within the hermeneutical tradition that I argue are foundational for social research:

1. The social reality is inherently meaningful. 2. There is no presupposition-less, tradition-less vantage point of interpretation. 3. The hermeneutical circle is central, i.e. a constant back-and-forth shuttling between parts and the whole. Meaningful material can only be properly understood within its context.

As qualitative social research starts from the idea of the meaningfulness of the social world, it likewise presupposes that the meanings being interpreted are themselves results of interpretative activity. This implies that, by living their lives in society, people organize their experience within their own frames of meaning, while the social researcher tries to enter and then grasp the layperson’s frames of meaning, and reconstitute them within her own theoretical frameworks (Giddens, 1993). In other words, social research is characterized by a reinterpretation of an already interpreted world. People whose words, ideas, and actions are interpreted also engage in interpretative activities because of the very mode of their being-in- the-world. Anthony Giddens calls this feature of the social and human sciences “double hermeneutics” and maintains that it is a main feature differentiating them from the natural sciences (Giddens, 1993, pp. 85, 166).

It could be argued that this project is characterized by a type of “multi-layered” hermeneutics. Indeed, my goal is the interpretation of ideas and meanings articulated by the staff about religiosity and the religious practices of other people, i.e. people with ID. In other words, my aim is to reinterpret and recontextualize staff members’ frames of meaning related to their users’ religiosity. At the same time, the latter’s frames of meaning concerning religion are themselves interpreted and contextualized by the staff.

4. Theory in context.

4.1. Place of theory in this research project.

Hermeneutics show us that there is no presupposition-less understanding, i.e. the knowing subject always draws on tradition and context. Knowledge is always perspectival; in other words, there can be no “God’s-eye view.” Hence, theories are always indispensable for empirical research. It would not be out of place here to mention the etymology of the word “theory,” namely theorein (to speculate, to look at), from thea (a view) (Online Etymological Dictionary). Theory can thus be considered a device that enables us to look at the world.

Moreover, the term “theory” is used with different meanings and can refer to different levels of abstraction. First, there are the general theories about the foundational assumptions of both the object of inquiry and the ways in which we can know it. These can be called “metatheories” (Danermark et al., p. 118), and can be about epistemology. Clearly, hermeneutics, understood as a theory of interpretation, can be seen as a metatheory of qualitative research. They can also deal with social ontology—or both social ontology and epistemology, as in the case of critical realism. This last critiques extremes of naïve realism and anti-realist constructionism in epistemology while offering a view of (social) reality as multi-layered and emergent. (I consider the latter aspect of critical realism later, within the context of theoretical approaches to disability.)

Beneath these all-encompassing general frameworks, there are theories related to specific parts, spheres, or dimensions of the social world. These, too, have different levels of abstraction, and can provide a general look at these different segments of the social world while dealing with more specific social phenomena. For example, in this research (and thus with respect to disability), the critical realist relational model and social role valorization theory (SRV) (the latter itself derived from a more general social role theory) represent such field-specific theories.

In some types of social research, it is also possible and useful to draw on theories that are formulated in such a way that permits a researcher to derive empirically testable hypotheses from them. In fact, US sociologist Robert Merton (1967), criticizing what he felt was the too- frequent use of all-encompassing “grand” theories in the social science of his day, proposed the notion of a “middle-ranged theory,” close enough to the empirical data to be operationalized

23 for a hypothetical deductive procedure (Merton, 1967, p. 39; Danermark et al., 2002). Indeed, theories like social role valorization theory could be operationalized in this way.

However, I would argue that not all kinds of social research, this study included, should follow hypothetico-deductive lines. Indeed, not every scientific work should employ a theory in order to test it. At least in qualitative ethnographic research, it is completely justified to apply theories as an interpretative framework, as a looking glass through which one can view the data (Danermark et al., 2002). To be sure, it could be argued that some core features of the hypothetico-deductive method—coming in with anticipations, preconceptions, and predictions, and then watching how they correspond with the data—might in some way parallel core features of the hermeneutical approach (Matzavinos, 2016). However, interpretative-oriented qualitative research, such as the research conducted for this thesis, cannot aspire to the precision of standard hypothetico-deductive procedures, nor focus on verifying or falsifying hypotheses. Later on, in the chapter dedicated to this study’s research methods, I will discuss issues regarding the relationship between theory and data in more detail.

As the subject of this project is complex and multidimensional, its span covers the sociology of religion and studies of disability and rehabilitation, and this breadth is reflected in the research questions. It is therefore necessary to turn now to theories from these diverse spheres of knowledge. Each theoretical approach sheds light on different dimensions of the subject under study. In the field of disability studies, I employ a relational model of disability, while I draw on social role valorization theory to shed light on the issue of identity and social roles. In the sphere of religious studies, I find it very useful to distinguish between specific dimensions of religion, as well as to include perspectives on the lived religion of everyday life.

4.2. Theoretical approaches to disability

The development of understandings and conceptualizations of disability has much in common with similar developments in other fields of theorizing about human life, especially gender theory and, to a certain extent, anthropological theories of ethnicity (Shakespeare 2014). In other words, those phenomena, initially seen as natural, essential, and pre-given, were later critiqued and unmasked as historically and socially contingent.

Regarding disability in general, and intellectual disability in particular, a somewhat ingrained and “obvious” intuition—at least among people in the modern Western world—is that these phenomena are placed in the bodies and minds of individuals. Even when someone acquires a disability during the course of her life, we still tend to think of the disability as a deficiency of her body or mind.

This way of thinking became fortified in the discourse around normalcy, which developed during the 19th century, especially in its latter half, with the emergence of statistics (Davies, 1997; Grue & Heiberg, 2006). Charles Darwin’s theory of natural selection and its extension to society by Herbert Spencer and others inspired the idea of biological fitness as a matter of governmental policy, which advocated the perfection and “improvement” of human inheritance by eliminating—whether understood literally or not—“deviations” that hinder the flourishing of the fit (Davies, 1997, p. 17). Disability, especially intellectual disability, was obviously categorized as a deviation.

However, one does not have to commit oneself to the extremes of eugenics to argue that, as an innate feature of one’s body or mind, the phenomenon of disability should be considered in the same vein as a medical disorder, as something that represents a problem that should be solved, if possible, by bringing it to some notion of “order,” i.e. to be healed. According to this logic, disabled people would be better off without their impairment, even if there is no remedy for it. This medical model often leads to policies of categorization, primarily in the form of diagnosing, in which people with disabilities are separated, discursively if not physically, from the “normal” population. Disability is thus understood primarily (though not necessary exclusively) as a natural, unchangeable, pre-social phenomenon. In this, it very much parallels the essentialist attitude to differences between men and women, which sees social and psychological aspects of these differences as rooted in innate natural characteristics.

The 1960s and 1970s, both in social and cultural theory and in political and social activism, saw a rise in critiques of essentialist approaches. Phenomena that before had been thought of as “natural” increasingly came under suspicion as being historically and socially contingent. In feminist theory and practice, for example, a division between biological sex and socio-cultural gender was proposed (Shakespeare, 2014; Lid, 2017): Here, sex was understood as an unchangeable biological base, while gender was a socially and culturally situated (and, therefore, changeable) “superstructure.” Since then, the somewhat ambiguous term “social constructionism” has made its way into popular usage.

“Social constructionism” has many meanings and ways of use, as well as misuse, in different contexts, and though that discussion is beyond the scope of this thesis, I will note a few essential points. First, in disability theory and elsewhere, the rejection of essentialism had critical and emancipatory motives. If a phenomenon with which we are concerned is not caused by natural processes—i.e. if it is not a property of (human) nature—it is not inevitable and therefore it is possible to undo it (Hacking, 1999). In this sense, to say that something is socially constructed is to argue that this “something” is often taken for granted and seems to be inevitable, but in fact is contingent and open to transformation by human praxis (Hacking, 1999). Regarding disability, thinking along these lines leads us to the conclusion that what is perceived as disability is not a property of one’s nature, but is contingent on social structures, relationships, and practices. Thus, it is not inevitable and can be demolished or dismantled.

Second, I tend to agree with the argument that it is redundant to speak of the constructions of phenomena that are obviously social and therefore historically situated and contingent (Hacking, 1999). What really makes matters interesting and produces new insights is the attempt to explore whether phenomena that are ascribed significance as essential and natural really are so—and, if so, in what sense. This is significant with regards to understanding disability and, especially, intellectual disability. A social constructionist would argue, in opposition to the rather commonsensical notion of disability as something natural and situated within the person’s body or mind, that this phenomenon is produced by social and cultural forces.

Third, it is important to underscore that the very understanding of disability as a social construction can take different forms. Here, I will briefly consider two of these forms—namely, that which sees the phenomenon as produced by material societal forces and structures, and that which views it as a product of language, discourse, or other signifying practices. The clearest example of the former approach developed in late 1970s–early 1980s Britain, and is often referred as “the social model of disability.” Some authors, however, label this model the British, or strong, social model, distinguishing it from other theories within a broad family of social constructionist approaches (Shakespeare 2014, p.11).

This model emerged from the disability rights activist group, the Union of Physically Impaired against Segregation (UPIAS), in the 1970s. In one of their publications, “The Fundamental Principles of Disability,” the group proclaimed that

[i]n our view, it is society which disables physically impaired people. Disability is something imposed on the top of our impairments, by the way we are unnecessarily isolated and excluded from full participation in society. Disabled people are therefore an oppressed group in society (UPIAS 1976, quoted in Shakespeare 2014, p.16).

This publication thus outlined the core notion of the social model of disability, namely the dichotomy between impairment, i.e. something inherent to one’s body and/or mind, and disability, i.e. social structures and practices that dis-able people with impairments. In short, in the social model of disability, the latter is understood not as a result of a physical mental pathology, but as an outcome of systematic social oppression and/or exclusion (Hughes & Paterson, 1997).

To be sure, proponents of the social model do not deny the real existence of impairments, but usually insist, in opposition to the medical model, that there is no causal relationship between one’s impairment and disability, i.e. the latter is not caused by the former, but by social structures and practices (Thomas, 2004; Hughes & Paterson, 1997). This notion, even developed further in the works of disability theorists like Mike Oliver, has a clear and profoundly political and emancipatory character: if disability is socially produced, it is contingent on and thus can be dismantled by social and political praxis.

The strong social model, i.e. the social model sensu stricto, is sometimes called a materialist approach to disability, because its proponents are most often focused on the social, political, and economic structures of disability, especially within the context of a capitalist mode of production (Thomas, 2004; Shakespeare, 2014). However, this model is but a variant of an approach that sees disability as socially constructed (for different categorizations of approaches, see Gustavsson, Tøssebro, and Traustadottir (2005)).

Another variety of the social constructionist approach to disability stems from a post- structuralist view on the linguistic and discursive construction of social identities, rather than their conditionality on material social structures (Thomas, 2004). Proponents of this approach— or, rather, group of related approaches—are critical to the strong social model, not least regarding what they perceive as its commitment to binary oppositions, notably “disability/impairment”: the former social, the latter biological and medical (Shakespeare, 2014). Very much paralleling similar thought in other spheres of social and cultural theory, especially gender and queer theory, and drawing on the thinking of such philosophers as Michel Foucault and Jacques Derrida, proponents of a post-structuralist approach to disability argue

27 that impairment, being a part of a human body/mind, is itself discursively constructed (Hughes & Patterson, 1997). Some have pointed out that the social model, by making a sharp distinction between (corporeal) impairment and (social) disability, ignored the cultural and social significance of corporeality and gradually smuggled in a medical notion of an a-historical, pre- social body that is, ultimately, devoid of meaning (Hughes & Patterson, 1997).

For instance, from the post-structuralist point of view, medical diagnoses may be seen as socially contingent and historically changing, and it can be argued that there is no underlying reference point beneath them. According to such a view, diagnoses create disabilities, and it is meaningless to speak of disabilities outside of diagnoses (Areheart, 2011).

Similar to materialist and Marxist-oriented social models of disability, the post-structuralist- inspired approaches deny any causal relationship between the alleged disabled body/mind that transcends discourses of impairment/disability and those very discourses.

Some authors—most notably, Tom Shakespeare—developed a constructive critique of both approaches as extreme and one-sided and provided a third alternative, drawing upon a critical realist approach from social philosophy. While this approach is relevant both to the epistemology of the social sciences and to social ontology, I consider only the latter aspect here.

Shakespeare, in his later work, provides a sustained critique of both materialist and post- structuralist varieties of the social model. Against materialists and “strong social modelists,” he argues that in many, if not most, cases, the distinction between impairment and disability cannot be drawn so sharply, and that there is an obvious causal relationship between them—indeed, impairments are necessary for disabling social structures to come into play (Shakespeare, 2014, p. 22). Siding with the post-structuralist-inspired theorists, Shakespeare (2014) shows that the social and physical dimensions of disability are deeply entangled; however, he also criticizes proponents of the strong social model for not attaching significance to the fact that, for many people with an impairment, that impairment constitutes an important part of their experience. Referring to his own impairment, Shakespeare emphasizes the importance of medical interventions for rehabilitation (Shakespeare, 2014).

Shakespeare’s critique of the strong social model is especially relevant for people with ID. Clearly, many of the obstacles they face are caused by the role of knowledge, intellectual competence, and accomplishment in modern societies, and are thus essentially societal (Sandvin, 2014). However, one cannot really say that the disability of people with severe

28 intellectual impairments, which are often accompanied by somatic disorders and chronic illnesses, are entirely caused by society.

Shakespeare also provides a critique of theorists who consider disability from a point of view inspired by post-structuralism. While subscribing to their attention to the cultural aspect of disability—especially to the representation of disabled people in different types of text—and their criticism of materialists’ disability-impairment dichotomy, he critiques their neglect of the corporeal dimension of disability (Shakespeare, 2014). For instance, in the case of medical diagnostics, while supporting a cultural approach that deconstructs these practices as tools in the construction of disabled identities, Shakespeare critiques the reduction of the phenomenon of disability to the diagnoses themselves; this, he says, ignores the fact that the medical conditions defined by diagnoses, while undoubtedly socially and culturally formed, are also intrinsic (Shakespeare, 2014). Again, he argues, there is a causal relationship between impairment and disability. Shakespeare also notes that the notion of disability as an exclusively discursive construction goes against the experience of the disabled people themselves as embodied subjects, and undermines their self-identification (Shakespeare, 2014). To find an alternative to the extremes of the medical and the (strong) social model on the one hand, and the deconstructionist approach on the other, Shakespeare turns to critical realism. (Other authors do so, as well: for example, Williams (1999).)

From an epistemological point of view, critical realists challenge radical constructivists by insisting that reality, which science is meant to study, has an existence independent of our mind and/or language, and that it is comprehensible. Impairment, in short, exists beyond language or other signifying practices about it (Shakespeare, 2014). On the other hand, they fully accept that reality cannot be grasped unmediated: all facts are theory-laden and culturally mediated. However, the presence of a cultural and social filter in front of our eyes does not necessitate its complete opaqueness.

To clarify this point, proponents of critical realism distinguish between three “domains” of the natural and social world: the empirical, the actual, and the real. The empirical domain is a sphere of our experience; it is not a direct reflection of the objects we study. This domain is distinct from the actual domain, which consists both of social events and our experience of them. The third domain is a sphere of “the real” which represents the productive forces, or “generative mechanisms,” that cause the event (Danermark et al., 2002, p. 22); these exist independently of our knowledge of them.

Then, another important distinction made by critical realists is between intransitive and transitive dimensions of reality and our perception of it (Danermark et al., 2002). The transitive dimension includes our theories, perceptions, and descriptions of reality, while the intransitive dimension is that to which those theories and descriptions refer. For instance, the different categorizations of disability, which exist in science or in society, represent the transitive dimension, as they cannot be reduced to its intransitive dimension, i.e. the disabled body.

Similarly, from an ontological point of view, the critical realist approach tends to see reality as stratified, with each layer having its own properties, which are non-reducible to the properties of other strata (Danermark et al., 2002). Thus, both bodily and socio-cultural dimensions of disability are irreducible to each other, as they both have emergent properties specific to their dimensions. At the same time, the natural/biological level of disability can explain some properties of its socio-cultural level, but cannot “explain it away” (Danermark et al., 2002, p. 61).

On the other hand, mechanisms and forces of each layer “cooperate” to produce certain events (Danermark et al., 2002, p. 63). Thus, one can claim that disability is produced by both natural and social causes, while neither of these aspects are fundamental in explaining the phenomenon. Disability can therefore be considered as an event in the realm of the actual, being a product of different generative mechanisms—social, cultural, and biological.

In line with this approach, Shakespeare turns towards a relational understanding of disability as an “interaction between individual and structural factors” (Shakespeare, 2014, p. 74). He proposes understanding disability as an outcome of the relationship between intrinsic factors (e.g. the nature of impairment or the individual’s own attitude towards it) and contextual factors (e.g. the cultural and social environment). Both of these factors determine the individual’s experience of disability. In other words, disability can be reduced neither to natural/medical states nor to social or cultural-linguistic processes or structures. Each of these participates in the formation of a disabled subject.

Unlike the strong social model, the relation model of disability gained a foothold in Scandinavia, and is therefore sometimes referred to as the Nordic model (Ellingsen & Sandvin, 2014; Gustavsson et al., 2005; Shakespeare, 2005). As I will later show, it has been used extensively in Norwegian disability policy, as well as serving as a foundational approach for the central agreement regarding international disability rights, namely the Convention on the Rights of Persons with Disabilities (CRPD).

Another British disability scholar, Carol Thomas, thinking along similar lines with her criticism of the narrowness of the strict social model, advocated for the social relational model of disability (Thomas, 2004; Thomas, 2003). However, unlike Shakespeare, Thomas situates herself more firmly within the social-materialist approach, emphasizing the importance of the social model as an activist tool and as a “rallying cry” for disabled people’s emancipatory praxis (Thomas, 2004, p.14).

Thus, an approach based on a critical realist, holistic view of disability as a relational, all- inclusive phenomenon provides a useful theoretical framework for analysis, upon which I draw in this research. However, it is important to bear in mind that the topic of this work is not disability per se, but its reflections and representations among professionals who work with people with ID. In this context, how might a disability theory help make sense of the ideas held by non-ID staff members about people with ID?

As I have already shown, the relational approach does not deny the socially and culturally constructed dimension of disability. In fact, it wholeheartedly recognizes its importance. Therefore, it would be useful to employ theoretical concepts of social identification and categorization to answer this study’s key research questions, namely regarding staff members’ perception of people with ID as religious subjects.

Any process of identification, whether self-identification or the ascription of an identity to another, includes finding both similarities and differences (Jenkins, 2008). To label or categorize someone as intellectually disabled implies an awareness or agreement about a certain standard, from which these people deviate—i.e. raises a question of “normality” (Shakespeare, 1996). Following a non-reductionist, relational approach, we cannot say that the (intellectual) normality is solely culturally and socially contrasted; however, it is entirely plausible to think of it in that way, to a certain extent. As I mentioned earlier, late modern society’s emphasis on information and knowledge—and its expectation that its members be proficient in these to succeed—strengthens the societal notion of normality and distinguishes it from (intellectual) non-normality more sharply.

These issues are ultimately related to another theoretical approach I find useful (and, indeed, use) in this research: namely, social role valorization theory (SRV), as developed by Wolf Wolfensberger (2000). Drawing on the work of the American sociologist Erving Goffman (1968), SRV takes the theory of social roles as its starting point. Social role is defined by Wolfensberger as a “combination of behavior, functions, relationships, privileges, duties, and

31 responsibilities that are socially defined, [are] widely understood and recognized within a society […], and [are] characteristic or expected of a person who occupies a particular position within a social system” (Wolfensberger, 2000, p. 110). Thus, social roles are not only what people occupy themselves, but also something others perceive and characterize. In fact, they play a significant role in the process of how people identify and categorize others in the social world (Wolfensberger, 2000). Hence, social roles are closely connected to social images, in such a way that most roles have social stereotypes attached to them (Wolfensberger, 2000). Thus, a perception of a person very often occurs via the role she occupies, and often implies stereotyping.

In this way, social roles and the social images attached to them could be valued (in varying degrees) or devalued in the eyes of others (Wolfensberger, 2000). Therefore, one of the main premises of SRV is that people’s quality of life is dependent on the value of the social role they occupy. The lives of people who experience their social role as devalued by others or by society in general are thus worse than those with more valued roles (Wolfensberger, 2000). As such, SRV has a clear, practical objective: to contribute to improving people’s lives, one should “valorize” the social roles they occupy (Wolfensberger, 2000, p. 106).

SRV has largely been developed with an eye towards people with ID, offering effective measures for constructing valued roles for them (Wolfensberger, 2000). Indeed, this category of people often bear highly negative and devalued social roles and imagery, such as that of an “idiot,” a performer of low-status and unskilled work tasks, an infantile “eternal child,” highly unattractive and asexual (or, vice versa, possessing an unbridled sexuality). However, positive imagery is sometimes invoked, such as child-like innocence, or positively-seen asexuality (chastity).

It is clear that people with ID can also take on social roles connected to religious life; likewise, these roles and the images connected to them may be valued or devalued by people who are considered, and who consider themselves, as non-disabled. Wolfensberger gives examples of both positive and negative roles within this domain, such as pastor and acolyte versus sinner and apostate (Wolfensberger, 2000). However, one can think of other, more relevant, negative roles, such as religiously indifferent, unspiritual, and preoccupied only with material things. Later in this thesis, I often point towards the suggestion of a historical tendency in the Christian (especially Protestant) cultural context to connect religiosity to “faith”: i.e. an intellectual belief in and acceptance of the articles of faith, which people with ID, especially with its most

32 profound forms, are presumed to be unable to grasp. On the other hand, even in this cultural context, there is positive imagery, in which people with ID are “angels” or innocent eternal children, as well as “victims” of their “tragic fate”; they can also be seen as being closer to God. Wolfensberger himself suggests the positive image of a “devoted follower of a religious faith” (Wolfensberger, 2000, p. 113).

I suggest that, in this research, SRV can be used in a stricter, analytical way. As an important area of focus for this study is on staff members’ perceptions of people with ID as religious subjects, it is entirely possible to consider “religious actor and subject” as a social role, positively laden in certain contexts but likely with a negative counterpart as an object of religious charity. SRV can be used to determine whether the staff members see this role as open to people with ID in general, and their users in particular—and, more broadly, to aid in understanding ways to identify the religious life of people with ID. It is clear that SRV could serve as an invaluable means to promote a positive assessment of people with ID as religious subjects, and therefore promote the realization of their rights and religious freedoms.

4.3. Theoretical approaches to religion.

As this project has very much to do with religion, it is necessary to consider some theoretical issues about this subject. One of the main questions that should be touched upon is the question of definition. Indeed, asking informants about their understanding of the religiosity of people with ID presupposes a certain idea about which practices are counted as religious and which are attributed to other spheres of human life. The researcher’s (pre)conception of religion may also influence the questions and topics in the interview guide.

At the same time, to give an exhaustive definition of religion, and provide a clear-cut dividing line between religion and other spheres of human culture, is notoriously difficult (Woodhead, 2011). There is no shortage of criticisms regarding the notion of religion as a universal, essential phenomenon (for example, Asad (1993) and Beckford (2003)). I will not go into these discussions here, but instead abstain from any substantial definitions of religion and focus on “the various situations in which religious meaning is constructed, attributed or challenged” (Beckford, 2003, p.16). From this perspective, both the meaning of what religion is and the ways in which religion functions change in different social contexts. This approach is also interesting because it allows one to see the construction and attribution of religious meaning,

33 both on the level of individuals and on the level of institutions, organizations, and communities (Beckford, 2003).

It is fair to say that such a perspective is in tune and intersects with the broad approach within contemporary religious studies that focuses on “lived religion” or the “religion of everyday life.” Emerging in the late 1990s, this approach directed its criticism towards essentialized notions of religion, debates around this notion, and the issue of secularization (Ammerman, 2012). It offered a turn towards religious practices, towards “domains of life where sacred things are being produced, encountered, and shared” (Ammerman, 2012, p.89). With regards to the present study, the most interesting element of this kind of approach is its effort to overcome many of the binaries frequently found within discourses about religion—for example, religious and secular, religion and spirituality, organized and non-organized, and “high” and “low” religion (Ammerman, 2012). Even more interesting is its deemphasis on belief, i.e. the cognitive aspects of religion, in favor of practice (Ammerman, 2012).

An approach that takes religious meaning as situative and contextual can also offer insights into how the socio-religious conditions of contemporary Norway influence and are reflected in ideas about religion, shared by the participants of this study and in their implementation of the principles, standards, and policy rules regarding religious freedom.

Given the elusive nature of religion as an analytical category, it has been suggested that the best way to approach this field of inquiry is by distinguishing specific dimensions or aspects of it. For example, the late British scholar of religion Ninian Smart introduced six dimensions of religion: the ritual, the mythological, the doctrinal, the ethical, the social, and the experiential (Smart, 1984). These dimensions need not be found in any religions, nor is it necessary to assume one of them as constituting the essence of religion. As such, one does not need to have a substantial definition of religion to use them productively.

Similarly, another British sociologist of religion, Linda Woodhead, proposed that, instead of defining religion, researchers should deal with different concepts of religion that do not center around certain essential features of the phenomenon, but rather acquire their meaning from the contexts in which they are placed (Woodhead, 2011). She singles out five major concepts of religion that she argues are implicitly or explicitly present in contemporary social science research on religion, particularly in the English-speaking world: religion as culture, as identity, as relationship, as practice, and as power (Woodhead, 2011). Several of these concepts themselves include different dimensions. For example, Woodhead considers culture as a very

34 broad category, consisting of religion as belief and meaning, as cultural order, as values, as discourse, as ideology and mystification, and as tradition and memory (Woodhead, 2011). Similarly, considering religion as identity, she delineates such aspects as community-creation and boundary-formation, identity-claim, and organizational belonging, while within the concept of religion as practice she discerns religion as ritual and embodiment, “popular” and “folk” religion, and religion and quotidian practice. This last is precisely the dimension addressed by the aforementioned approach of “lived religion” and “religion in everyday life.”

The approaches proposed by Smart and Woodhead are important for the study of religion in society not only because they provide a valuable tool kit for exploring a multi-faceted social and cultural world, but also because they do not prioritize any of the dimensions. This latter issue is especially significant for this research, situated as it is within a Nordic context and touching upon the sphere of intellectual disability.

It may be argued that the notion of belief—i.e. the cognitive acceptance of a certain doctrine or set of doctrines—as a central and essential feature of religion is deeply entrenched in the Nordic cultural context, and may reflect a specific legacy of the Reformation, with its theological emphasis on the confession of faith (Henriksen, 2016; Woodhead, 2011)2. Ritual dimension, on the contrary, is considered to be unnecessary, if not outright detrimental, to salvation (Henriksen, 2017).3

At the same time, it may also be argued that a certain emphasis on belief as an essential, if not the most important, feature of religion is not confined to cultures formed by Protestantism, but is significant for Christian traditions as a whole. Although the Reformation, as well as the Catholic Counter-Reformation, contributed significantly to the elevation of the doctrinal dimension of religion, Christianity, at least in its theologically informed mode, lay emphasis on doctrine through the most of its history.

Looking at religion from this point of view, it is easy to neglect dimensions of the religious life of people who are unable to confess their faith or have a clear awareness of religious doctrines,

2 At the same time, it may also be argued that a certain emphasis on belief as an essential, if not the most important, feature of religion is not confined to cultures formed by Protestantism, but is significant for Christian traditions as a whole. Although the Reformation, as well as the Catholic Counter-Reformation, contributed significantly to the elevation of the doctrinal dimension of religion, Christianity, at least in its theologically informed mode, lay emphasis on doctrine through the most of its history.

3 Compare with Martin Luther’s statement: “For whoever stands correctly and firmly in the belief that Jesus Christ is true God and true man, that he died and had risen again for us, such a person has all other articles added to him and they firmly stand by him” (Luther, 1960, p. 205, quoted in Henriksen, 2016). 35 i.e. many people with ID. Therefore, approaches that focus on lived, everyday religion, as well as more systematic approaches that allow engagement with different dimensions and aspects of religion, are important: They can challenge the conventional representations of religion as primarily, or even exclusively, based on belief, and shed light on the patterns of religious life beyond the boundaries of belief.

While this issue is important, it should be remembered that the aim of this study is not the religiosity of people with ID per se, but how this religiosity is perceived by their service providers. As such, the aforementioned approaches to the study of religion do not represent the key analytical tools used in this research. However, I consider these highly important to this study, because they serve as a significant reference point and background for the ideas, perceptions, and thoughts that the informants have shared with me.

4.4. Disability, human rights, and citizenship.

Considering the theoretical understanding of (intellectual) disability, and its implications for society, one must discuss more thoroughly the issues of rights and citizenship in relation to people with ID. These issues are all the more important because they are directly related to some of the research questions I pose in this project, namely how the staff secures users’ religious freedom and their right to religious practice, and how people with ID are perceived by their caregivers as religious subjects and agents.

It is sometimes argued that one of the main challenges around the human rights of people with ID is the oft-perceived notion that rights are connected to intelligence (Skarstad, 2018). To possess rights, from this perspective, requires one to have reasoning, self-awareness, and the ability to make autonomous decisions. Therefore, from this point of view, people with ID cannot be entitled to same rights as non-intellectually disabled people, since they do not possess the same intellectual capacities (Skarstad, 2019). People with the most severe ID, the argument goes, may lack even the most basic rights (Griffin, 2008). Even those theories that take a more nuanced view still lead to the perception of people with ID more as objects of pity then persons with capacity for agency. Thus, the standard view regarding the foundation of human rights risks excluding a significant segment of the population.

There have been efforts to overcome this challenge. For instance, it could be strongly argued that the liberal idea of an autonomous, independent, individual existing prior to society is

36 implausible; we become ourselves only in community with other persons, in relationship to and dependent on them (Skarstad, 2018). This topic has been critically examined by feminist theorists, in particular, many of whom maintain that the notion of an autonomous, independent, and self-sufficient subject is inadequate for addressing issues of social injustice. They propose instead the idea of vulnerability and (inter)dependency as a universal and fundamental characteristic of human existence and as a more suitable foundation for a just society (Fineman, 2008; Lid, 2017; Heiene, 2020). For instance, American philosopher Eva Feder Kittay proposes an idea of a “transparent self,” i.e. “a self through whom the needs of others are discerned” (Kittay, 1999, p. 51).

Another critique comes from American legal philosopher Martha A. Fineman, who criticizes the notion of what she calls the “liberal subject” for being exclusionary, leaving out significant portions of the humans’ life experience (Fineman, 2008). In other words, while independence and self-sufficiency are attainable only by the (adult, healthy, able) segment of the population, we all, as human beings, are at least potentially at risk of “harm, injury, and misfortune from mildly adverse to catastrophically devastating events” (Fineman, 2008).

On the other hand, the Australian feminist philosopher Catriona Mackenzie disagrees with Fineman about her position on autonomy. For Mackenzie, acknowledgement of personal autonomy is indispensable for addressing the issues of oppression, marginalization, and injustice. However, she insists that this is not necessarily tantamount to the liberal, atomistic idea of self. Mackenzie (together with other social and political theorists, it should be noted) proposes the notion of relational autonomy, i.e. an account of an autonomy embedded in social relations, structures, and institutions and either constrained or enabled by them (Mackenzie, 2019). She proposes a multidimensional approach to autonomy, distinguishing in it three interrelated aspects: self-determination (structural conditions for the enactment of individual autonomy, freedom from oppression, and the opportunity to live a good life), self-governance (the ability to make choices on the basis of an awareness of one’s own values and competence, and freedom from false consciousness), and self-authorization (regarding oneself as an “author,” a subject of one’s life) (Mackenzie, 2019).

I consider Mackenzie’s approach interesting and persuasive; however, in her analysis and defense of the notion of personal autonomy as a relevant social and political notion, she is mainly concerned with feminist issues, and it is unclear how this may be applied to people with ID. For instance, both self-government and self-determination aspects seem to presuppose

37 significant cognitive abilities (Mackenzie, 2019).4 Nonetheless, a possible contribution to the theory of autonomy and the individual rights of people with ID is Mackenzie’s emphasis on human rights as fundamentally relational and social, immersed in and formed, among other things, by “social relations of recognition” (Mackenzie, 2019).

Mackenzie draws partly on American ethicist and political philosopher Martha C. Nussbaum, whose work had been highly influential in the field of theory of justice. Along with Fineman, Nussbaum seeks to base rights and human dignity not on rationality, but on vulnerability and dependency as universal human conditions (Nussbaum, 2006). For instance, she criticizes one of the most influential contractarian accounts of human rights, namely that of John Rawls, for its inability to include all people in the social contract (Nussbaum, 2006; Nussbaum, 2009). For Nussbaum, the most profound dimension of human beings is their dependency and vulnerability, rather than their rationality and autonomy; while the rationality and ability to make autonomous decisions are temporal and changeable, being dependent and vulnerable are essential characteristics of our existence, from infancy to death (Nussbaum, 2006). Moreover, Nussbaum clearly anchors human dignity in the embodiment of human existence: “Any bodily need, including the need for care, is a feature of our rationality and our sociability; it is one aspect of our dignity, then, rather than something to be contrasted with it” (Nussbaum, 2006, p.160).

To establish a foundation of a more inclusive notion of rights that is not reduced to rational autonomy, Nussbaum proposes a universal set of capabilities, which should represent a minimum of entitlements for members of a just society (Nussbaum, 2006). She argues that such a minimum could overcome the implicit exclusivism of liberal contractualist positions akin to that of Rawls’, and include in its fold subjects with disabilities (Nussbaum, 2009).

Independent of the persuasiveness of these attempts to deal with some fundamental problems of intellectual disability and rights, each tries to defend an intuitive understanding of rights as prerogatives every person qua human being is entitled to (Skarstad, 2018). Another important issue, to which the above-mentioned approaches contribute, and that is in many respects central to this research, is that human rights are relational—they do not merely exist as something people possess individually, but even more so as a set of social relations. In other words, in

4 Although Mackenzie criticizes the mainstream approach to self-governance, understood “as a matter of exercising internal agential control over one’s will and elements of one’s psychology” in “narrowly cognitive and volitional terms,” she nevertheless argues for the “importance […] of a wide range of emotional, imaginative, and critically reflective skills, such as capacities to interpret and regulate one’s own emotions, to imaginatively envisage alternative ways of acting, and to challenge social norms and values” (Mackenzie, 2019). 38 most cases, rights obtain their significance in a community through supportive relationships with and recognition by other people. Therefore, I now turn to a notion that thematizes this aspect, namely the idea of citizenship.

Citizenship can be understood in different ways, the most basic of which is belonging to a social or political community (Marshall, 1949, 1992). Citizenship theorists often differentiate between citizenship as status (when someone is recognized as a member of a community) and citizenship as practice or activity (the roles and actions expected from a citizen) (Kymlicka & Norman, 1994; Fjetland & Gjermestad 2018). In this respect, citizenship is traditionally connected to entitlement with rights and obligations (Isin & Turner, 2007). In other words, community members are recognized as having rights associated with duties. The most standard and well-defined notion of citizenship, in this respect, is membership in the political community of a nation-state, which, it could be argued, is important for the enactment of human rights (Isin & Turner, 2007). However, recently, attempts to thematize citizenship as exclusively bounded to nationality have been challenged by conceptualizing different forms and levels of citizenship, especially cosmopolitan citizenship (Isin & Turner, 2007; Hudson, 2003).

Furthermore, the understanding of citizenship as bounded to a certain set of requirements and duties poses a risk of excluding citizens with severe ID, on the grounds of their lack of ability to perform as rational, competent, responsible subjects (Fjetland & Gjermestad, 2018). People with ID are thus at risk of not being recognized by their co-citizens— ,in particular, by service providers—as active citizens due to the real or assumed lack of certain capacities that are often understood as indispensable for this status. In other words, they are in danger of being marginalized as individuals apparently unable to contribute to the community in any significant way.

However, as with the rights of people with ID, it is a challenge as to how the active citizenship of people with ID—i.e. those who apparently lack the capacities of fully rational and independent individuals—may be justified, understood, and interpreted (Fjetland & Gjermestad, 2018). One attempt to overcome this challenge, as proposed by Kirsten Jæger Fjetland and Anita Gjermestad, is to see active citizenship in terms of narrative co-authorship, which implies that all utterances of the members of a community should be recognized as having social significance and as being able to contribute to the community. People with profound IDs should, therefore, be recognized as agents because their utterances play a role in the authorship of their social life (Fjetland & Gjermestad, 2018).

Thus, the issue of intellectually disabled peoples’ rights and possibilities as active citizens is challenging and far from straightforward. It is too easy to marginalize the voices and contributions of people with ID and thus deny them recognition as agents and subjects, treating them as merely passive recipients of care. However, with all the work that has been undertaken, including the theoretical contributions and the development of legal discourses around disability rights, on both international and national levels, significant progress has been made. In Chapter 9, I will consider how the question of the active citizenship of people with ID may be related to the issue of their religious belonging and practice.

5. Context.

5.1. Religion in contemporary Norway.

Among the general population and researchers, Scandinavia is often depicted as one of Europe's most secular parts. This representation works exceptionally well in the cases of Sweden and Denmark, but Norway, too, has a reputation for being mostly irreligious (Zuckerman, 2009; Davie, 2002; Schmidt, 2010b). However, when speaking about secularizing tendencies in Norway, it is important to note the ambiguity of the very notion of secularity and secularization (Gorski & Altinordu, 2008; Beckford, 2003). It is not my aim to discuss these notions here in any thoroughgoing way. Nevertheless, if by secularity, one assumes a lack of presence of religion, the more helpful approach to it would be considering it as unfolding differently on different societal levels (Dobbelaere,1981;2002). For instance, the scope of religious presence and significance could be arguably different in respect to the state's constitutional order, civil society, and individual citizens' private lives.

From this perspective such variables as a belief in a personal God, church attendance, participation in public religious rituals, and prayer are indeed relatively low in Norway, and are continuing to decrease. According to a review of Norwegian religious surveys administered between 1991 and 2008, regarding different positions on faith, 18% of the respondents in 2008 reported that they “do not believe in God” (a 6% increase from 1998), while 15% reported that they “believed without doubt” (a decrease from 17% in 1998) (Botvar, 2010). At the same time, 24% declared that they “believe in a supreme force” (equal to the reporting in 1998, and a 1% decrease from 1991), while 29% said that they “believe/doubt” (a decrease from 30% in 1998 and 33% in 1991) (Botvar, 2010). Similarly, according to the European Value Study 1990– 2010, between 2008 and 2010, 56% of the Norwegian respondents declared their belief in God: a decrease from the 65% reported between 1990 and 1993) (Furseth et al., 2018).

Other indicators show similar trends. According to the aforementioned data from Norwegian religious surveys, in 2008, 43% of Norwegians never participated in church services, apart from baptisms, weddings, and funerals (34% in 1998), while 42% did so less often than a few times a year (47% in 1998) (Botvar, 2010). In 2008, 45% of Norwegians never prayed (38% in 1998), while 28% prayed less often than once a month (Botvar, 2010). Data from the European Value Study for the period between 2008 and 2010 show a more or less similar—if not even more

41 secular—picture: 54% of respondents had never attended a church service, or had done so less than once per year, while 24% did so on special holidays (Furseth et al., 2018). At the same time, according to the Pew Research Center’s 2015–2017 survey, 19% of Norwegians consider religion important in their lives, compared to 10% of Swedes and 8% of Danes (Pew Research Center, 2018).

On the macro level, Norway has long been dominated by one faith tradition, Lutheranism, and one established church, the Church of Norway (Schmidt, 2010). However, in line with the majority churches in other Nordic countries (except Denmark), it has recently undergone a process of disestablishment, starting with the 2008 inter-party parliamentary agreement and culminating with the constitutional amendment of 2012 (Kultur- og kirkedepartementet, 2008; Kühle et al., 2018). Previously, both legally and in common parlance, the Church of Norway had been defined as a state church.5 While the previous version of the Norwegian Constitution’s §2 declared that “[t]he Evangelical Lutheran religion remains the state’s public religion” (Den evangelisk-lutherske Religion forbliver Statens offentlige Religion), the newest version defines the Church of Norway as an “[e]stablished Church of Norway” (Norges folkekirke) and stipulates that it “will as such be supported by the state” (Constitution, 2018, §16). The interesting point here is that the term folkekirke, which should be accurately translated as “folk church,” or “people’s church,” is rendered in the official English translation of the Constitution as the “established church,” which, in this context, appears not to be the same as the state church.

Even after the formal separation of the Church of Norway from the state, it remains not only the largest religious organization in the country (75% of the population in 2014 were members (Furseth et al., 2018, p. 43)), but also the one still most connected to the cultural and historical identity of the majority of Norwegians. Moreover, the Church of Norway itself appeals to this special relationship. In the programmatic document “The Church of Norway’s Identity and Mission” (Den norske kirkes identitet og oppdrag), a statement of the General Synod of 2004, the Church is defined as a “professing, missionary, serving and open folk church” (folkekirke), thus using the term later included in the Constitution.

5 This term, both generally and in the Norwegian context, is not without problematic aspects. Though the Norwegian Constitution had proclaimed Lutheranism as “the state’s public religion” until 2012, the term “state church” (statskirke) appeared in legal acts only beginning in 1919, while “Church of Norway” (Den Norske kirke) was explicitly anchored in the law beginning in 1925 (Smith, 2012, p. 103). On the other hand, it is not always clear what the term “state church” should mean, precisely, because it can imply different degrees of integration of a church into state institutions (Kühle et al., 2018, p. 84). 42

Now, the term folk church—in political, legal, and ecclesiastical discourse—is admittedly problematic, or, at least, ambiguous. Indeed, it is not clear who is included in the term “folk” (i.e. “people”) (Smith 2012); clearly, if this term is meant to refer to all members of the Norwegian political community, it is incorrect both legally and evidentially, as it would exclude a large number of citizens from its fold. The Church’s General Synod acknowledges this problem by pinpointing that “as a folk church, the Church of Norway is not identical with the community of the people (folkefelleskapet) but is a distinctive community founded on the baptism and faith” (Kirkemøtet, 2004, p. 4). It emphasizes that, while defining itself as a folk church, the Church of Norway clearly dissociates itself from equating “folk” with ethnically Norwegian people; it even declares that “‘people’ (folk) and ‘church’ are not coinciding dimensions” (Kirkemøtet, 2004, p. 16). The document emphasizes the Church’s proximity to and engagement with individual people’s and local communities’ daily life, including those dimensions formed and permeated by Christian tradition (Kirkemøtet, 2004, p. 15); moreover, it insists on the Church’s role in the management of national cultural heritage (Kirkemøtet, 2004, p. 16). The Church of Norway could also be defined as a folk church because of its openness—it does not make demands of its members other than baptism (Kultur- og kirkedepartementet, 2008, p. 32).6 This understanding of folk church could be connected to a type of religiosity, sometimes referred to in the literature as “folk church religiosity” (folkekirkelighet). For example, in their research on the regional variation of religiosity in Norway, Botvar and Aagedal (2002, 2010) use this term as an index, composed of variables such as “general belief/doubt in God,” sporadic churchgoing, and “ praying a ‘few times in a year or less often’” (Botvar & Aagedal, 2010, pp. 49, 206). They suggest that this type of religiosity is most characteristic to inner eastern Norway (Botvar, Repstad & Aagedal, 2010).

6 One oft-quoted understanding of the term “folk church” was formulated in the Recommendation to the Storting nr. 265 (1980–81) by the Standing Committee on Church and Education: “With a folk church, it is understood as a church where the baptism is the foundation of membership and voting rights, as well as a church that embraces the majority of the people. The opposite to a folk church would be when a church that, in addition to the baptism, requires personal qualifications or declarations [from people] to be a member or to have church voting rights. It is beyond doubt that, to the great majority of people, the term ‘folk church’ means a church in which people have the opportunity to participate in church activities like baptism, confirmation, and marriage without the requirement of personal faith.” (Med folkekirke menes en kirke hvor dåpen er grunnlag for medlemskap og stemmerett, og vel også en kirke som omfatter det store flertall av folket. Motsetningen til folkekirken blir da en kirke hvor det i tillegg til dåpen kreves personlige kvalifikasjoner eller erklæringer for å kunne bli medlem eller ha stemmerett i kirken. Det kan heller ikke være tvil om at for store deler av folket står også uttrykket «folkekirken» for en kirke hvor mennesker får ta del i kirkelige handlinger som dåp, konfirmasjon og vigsel uten at det stilles krav til deres personlige trosforhold) (Kirke- og undervisningskomiteen 1981, p. 6)

Needless to say, at least from the 19th century onwards, Norway has been a society that includes diverse religious traditions. While different Protestant denominations and Catholicism have been present in the country since the 1845 Dissenter Act, and Judaism since at least the end of the 1800s, in the past few decades Norway has seen the growth of non-Christian faiths, including Islam, Hinduism, Buddhism, and Sikhism. A relatively influential secularist movement represented by the Norwegian Humanist Association (Human-Etisk Forbund) also has a significant presence.

Given the above, and that this research is not about the church’s attitudes towards people with ID as religious subjects, but rather about the attitudes of staff members at residential homes and day centers, it may seem superfluous to discuss this topic here. Nevertheless, as will become clear, the emphasis I have placed on the Church of Norway and its (self-)understanding as a folk church, as well as on its attitude towards the religiosity of people with ID (which I explain later), is justified. The reason for this is that the concept of the Church of Norway as a folk church seems relevant with regards to the relationship most of my informants have with religion and their perceptions of the religiosity and religious practices of service users. In addition, each of the locations I studied have some kind of collaboration with the local congregation and/or a priest. Thus, I believe the above discussion about the folk church concept is relevant for this research.

However, the issue of religious diversity in contemporary Norway also holds significance for the project, as will be evident in the following chapter. My goal for the selection of study locations and informants was to include voices from people with non-folk-church backgrounds—and indeed with non-Christian and non-Western backgrounds—wherever possible. Those voices provided important and interesting information.

5.2. Norwegian policy towards people with ID—a short historical outline.

One might assume that the establishment of a modern welfare state in Norway automatically resulted in an improvement of the living conditions of people with ID, but this was not necessarily the case. By the end of the 19th century, the first schools for intellectually disabled

44 people, as well for those with sensory impairments, had already been founded by concerned individuals, especially teachers (Sandvin 2014, p. 93–94). In 1881, the right to education for children with intellectual disabilities and/or visual and hearing impairments had been established by law (Sandvin 2014, p. 94). Education in these schools was largely oriented towards professional training, and the available statistics from the end of the 19th century show that the majority of those who completed their education at these schools were able to find full- or part-time work (Sandvin 2014, p. 94).

In the early 20th century, especially during the inter-war period, both attitudes and official policies towards people with ID, as well as those with visual and hearing disabilities, worsened, due to the popularity of eugenics among medical scientists, professionals, and the general public (Sandvin 2014, p. 94). In 1934, the Sterilization of the Feeble-Minded and Mentally Ill Act had been enacted.

At the same time, the mid-1930s saw the first proposals for the opening of special residential institutions for people with ID. Such institutions were initially meant to be quite large, and to house up to several hundred individuals (Sandvin 2014). The primary goal for such institutions was to isolate people with ID from “normal” society, rather than serve them.

However, the policy of moving people with ID into large institutions began in earnest in the 1950s—even if, due to post-war reconstruction, it was the volunteer charity sector and not the government that oversaw the program (Sandvin 2014; Tøssebro et al., 2012). This meant that the size of institutions was often smaller than, for example, in Denmark, because charities often found it easier to raise money locally for smaller institutions (Tøssebro et al., 2012).

The living conditions in these institutions in the 1950s and early 1960s were often precarious. Large numbers of people were typically placed together, often in common dormitories, without much opportunity for private life and development. Indeed, life in such institutions has been described as “storage under the roof” (Skouen, 1966, p. 38); placing people with ID in institutions has also been considered a form of segregation (Tøssebro, 2016). The living conditions in these institutions eventually came under severe criticism from different arenas, and in the 1970s the first measures to address these issues were put in place. The Hospital Act of 1970 transferred the oversight of residential institutions from county authorities to the established Healthcare Service for Intellectually Disabled People (Helsevernet for psykisk utviklingshemmede (HVPU)) (Sandvin, 2014). Gradually, institutional care for people with ID became more decentralized, and new, smaller, and better facilities—including educational and

45 professional facilities—were established. At the same time, normalization theory, developed by Bengt Nirje (Nirje, 1969) in Sweden and Wolf Wolfensberger (1972) in the United States, began to enter policy discussions (Ellingsen & Sandvin, 2014; Tøssebro, 2016).

These reforms, however, did not extinguish criticism, which was soon directed towards the institutionalization of people with ID itself, rather than towards specific kinds of institutions (Sandvin, 2014). This led to the appointment of an official commission in 1981, which delivered a white paper in 1985 that concluded that not only were living conditions in the institutions unacceptable, but that the institutional model of care for people with ID could not be justified (Sandvin, 2014). The process of a total dissolvement of the HVPU was thus initiated—a reform promoted by the Storting in 1988 and implemented between 1991 and 1995, with most of the institutions closing between 1991 and 1993. The last institutions were closed in 1999 (Söderström & Tøssebro, 2011).

This reform was still based on the ideology of normalization but, unlike the approach taken in the 1970s during the previous reform, whose goal was to give people with ID the same opportunities as others, the intention now was to provide opportunities for an active and meaningful life together with others (Ellingsen & Sandvin, 2014; Tøssebro, 2014). First and foremost, this meant that they were to be relocated from institutions to residential facilities that were normalized as much as possible: i.e. small and located within residential areas, ideally as single-person households. It was planned that people with ID would live either on their own (i.e. in houses or apartments) or in shared accommodations (bofellesskap), in which no more than four individuals lived, with private apartments for each (Tøssebro, 2014). A housing option called collective accommodation (bokollektiv), with less private space than in shared accommodations, was also proposed, but only as an exception (Tøssebro, 2014).

During the first phase of the reform’s implementation, in the 1990s, shared accommodation began to dominate, while only 6% of people with ID moved into private housing. Immediately following the closing of the first institutions, there were concerns that moving people with ID from institutions into new accommodations would exacerbate their isolation and loneliness. It was also suggested that establishing group accommodation would prevent the residents from being lonely (Tøssebro 2014). One can observe a gradual increase in the average number of residents in shared accommodations, from 3.8 in 1994 to 7.0 in 2010 (Tøssebro, 2014). This increase means that the initial intention of the reform was not fully realized and reflects a higher number of residents in Norway’s group homes than that recommended by international research

(Tøssebro, 2014). At the same time, the number of those who moved into personal accommodations increased from 6% in the early 1990s to about 20% in 2010, while the number of residents in collective accommodations (bokollektiver) decreased to 2% that same year (Tøssebro, 2014).

Facilitation of daytime activities for people with ID likewise underwent dramatic changes during the past 30 years. Educational programs, once a significant part of the institutions, were phased out to the extent that, in 2010, only 3% of service receivers made use of them, compared with 25% in 1989. The share of those using municipal activity centers grew from 24% in 1989 to 32% in 2010, while 29% of people with ID now work in the day centers (Tøssebro 2014). Approximately one-fifth of people with ID have been given jobs through a work assessment allowance administered by the Norwegian Labor and Welfare Administration (NAV). At the same time, however, the share without jobs or activities increased from 3% in 1989 to 16% in 2010. The reason for this rather alarming trend is unclear, but might be partly due to the closing of already-existing facilities (Tøssebro 2014).

5.3. Living conditions of people with ID during the HVPU reform and after.

While the goal of the HVPU reform was to integrate people with ID into wider society, research on their living conditions since then shows mixed results. According to Söderström and Tøssebro (2011), certain aspects relating to the social network of people with ID, such as contact with their family and making friends, improved immediately following their relocation, with a slight decrease following the end of the reform period. The same trend can be observed in the contact between people with ID and their non-intellectually disabled neighbors. Data from Söderström and Tøssebro show an increase in those who experienced being greeted by non-intellectually disabled neighbors from 38% in 1994 to 47% in 2001, followed by a drop to 41% in 2010. At the same time, the percentage of those who knew at least one non-intellectually disabled neighbor well enough to visit him/her, being rather low, had increased from 19% in 1994 to 22% in 2001, but dropped to 16% in 2010 (Söderström & Tøssebro 2011). Tøssebro (2014), commenting on the data, notes that the social distance between people with ID and those without has increased (Tøssebro 2014).

In outlining the living conditions of people with ID, including how they have changed since the pre-reform period (both during and following the reform), it is also interesting to look at such factors as leisure time activities and personal autonomy. The first is especially important

47 because, at least in the research conducted by Söderström and Tøssebro (2011), attending a church service is included among leisure time activities. They compared data they had collected in 1989, i.e. right before the start of the reform, with data collected in 1994, 2001, and 2010. Their findings show that, on average, participation in leisure time activities fell in conjunction with the closure of institutions, but began rising in 2001, surpassing the 1989 level in 2010 (Söderström & Tøssebro 2011). However, churchgoing was somewhat higher in 2001 than in 1989, while it dropped again in 2010 to a level only slightly higher than it was pre-reform. At the same time, compared with other types of activities, especially pursuing a hobby, dancing, and dining at a restaurant, churchgoing scored low—in 2010, it was only higher than visiting museums or exhibitions, going to concerts, and attending sporting events (Söderström & Tøssebro, 2011).

What is particularly interesting in Söderström and Tøssebro’s (2011) study is their inclusion of personal autonomy in their consideration of the different aspects of intellectually disabled people’s living conditions, as this variable is not often included in this kind of research.7 The researchers asked respondents if they made decisions on their own regarding a number of different activities; they found a general increase in independent decision-making between 1989 to 2001, followed by a decrease in all types of activities (Söderström and Tøssebro, 2011). In addition, they examined staff members’ justifications regarding the restricted personal autonomy of people with ID. Their data show that the so-called “organizational argument”— i.e. that it is difficult to facilitate users’ personal autonomy because of scheduling, shifts, and so on—became significantly less prevalent once de-institutionalization began in 1989, but increased once again between 2001 and 2010 (Söderström and Tøssebro 2011). At the same time, the argument regarding intellectually disabled people’s level of functioning—i.e. that they cannot express their wishes—showed a similar pattern: decreasing from 1989 to 2001 and increasing afterwards (but only slightly) (Söderström and Tøssebro 2011). The authors find these trends alarming.

7 The authors point to the importance of including personal autonomy in their research because of its importance and centrality within the field of disability policies. They also, however, note the ambiguity of the use of personal autonomy as a topic of examination within research on general living conditions. They point to the fact that increased personal autonomy could potentially jeopardize other important needs of people with ID. For example, an argument for autonomy could be misused to enhance a user’s passivity (“he doesn’t want to do it anyway”) or for cutting municipal spending for activities. However, the authors nevertheless consider their approach justified, and report a general increase in the realization of personal autonomy as a positive trend and vice versa (Söderström and Tøssebro 2011). 48

5.4. Norwegian policy towards people with ID—current documents.

Following the HVPU reform, Norway officially addressed the issue of people with ID— specifically, their rights and living conditions—in a number of policy documents. Here, I will discuss the most recent and by far the most comprehensive of these, namely the Official Norwegian Report “På lik linje” (2016).8 Before doing so, however, I must mention two key documents from international law that constitute the basis for the 2016 report.

In 1993, the Standard Rules of Equalization of Opportunities of Persons with Disabilities (Standard Rules) were adopted by the General Assembly of the United Nations (UN) as a non- binding set of policy rules for member states (United Nations, 1993). Resulting from the work of an ad hoc committee appointed by the United Nation’s Economic and Social Council’s (ECOSOC) Commission for Social Development, the Standard Rules represent the first attempt at both confirming the rights of persons with disabilities and providing measures for both their implementation and their monitoring (United Nations, 1993). It is important to note that, in defining the fundamental concepts of disability policy, the resolution critiques approaches that fall within the medical model and highlights the differences between the notion of disability (the “different functional limitations” of some people) and handicap (“the loss or limitation of opportunities to take part in the life of the community on an equal level with others”) (United Nations, 1993, p. 7). It understands a handicap as a relation between a person with a disability/impairment and an environment that is not sufficiently suitable for providing quality living and development.

The next step in the development of the codification of the rights of people with disabilities came in 2006, when the UN adopted the Convention on the Rights of Persons with Disabilities (CRPD). Based on international human rights, affirmed in the Universal Declaration of Human Rights and in the International Covenants of Human Rights, the Convention was adopted “to promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities, and to promote respect for their inherent dignity” (United Nations, 2006). In the category of persons with disabilities, the Convention includes

8 An Official Norwegian Report (Norsk Offentlig Utredning—NOU) is an official report on a social issue, published by an ad hoc commission of experts appointed by a Norwegian ministry or department. NOU 2016:17 “På lik linje” is published only in Norwegian, with no official translation of the report. The title may be translated, however, as “On the same level” or “On Equal Footing.” 49

“those who have long-term physical, mental, intellectual or sensory impairments” (United Nations, 2006). The Convention addresses several important issues, among them equality and non-discrimination (Article 5), women and children with disabilities (Articles 6 and 7), accessibility (Article 9), and freedom from exploitation, violence, and abuse (Article 16), and obliges parties that ratify it to implement these articles (United Nations, 2006).

As with the Standard Rules, the Convention defines disability as “an evolving concept … [resulting] from the interaction between people with impairments and attitudinal and environmental barriers that hinders their full and effective participation in society on an equal basis with others (United Nations, 2006, p. 1). There has been debate about which theoretical approach to disability the Convention follows, with some researchers arguing that its Article 1 reflects the social model (Stein & Lord, 2009). However, I would argue that by pointing towards the interaction “between persons’ impairments”—i.e. the intrinsic factors and contextual, attitudinal, and environmental factors—the Convention has clearly adopted a relational model of disability (Lid, 2014).

It is possible to interpret the Convention as departing from the view that rationality is a prerequisite of human rights. For instance, in Article 3a, the Convention, by emphasizing “[r]espect for individual autonomy, including the freedom to make one’s own choices, and independence of the persons,” clearly endows all individuals with autonomy, irrespective of their level of intelligence (United Nations, 2006, 3a; Skarstad, 2018). Moreover, the Convention clearly endorses the view that disability is a natural part of human diversity (United Nations, 2006, 3d.).

Furthermore, the Convention pays significant attention to social relations as the precondition for the full realization of the human rights of disabled people (Skarstad, 2018). For instance, it makes a strong emphasis on the right of “[f]ull and effective participation and inclusion in society” (United Nations, 2006, 3c; 19). The Convention is the first among the international human rights conventions to explicitly maintain inclusion in the community as a distinct human right (Skarstad, 2018). The Convention specifies different ways of inclusion and participation in the community, insisting on the right of people with disabilities to have political rights and the “opportunity to enjoy them on equal basis with others” (United Nations, 2006, 29). According to Article 29, the States Parties “shall undertake […t]o ensure that persons with disabilities can effectively participate in political and public life on equal basis with others” (United Nations, 2006, 29a.).

In addition, it is important to note that the Convention requires States Parties to endorse the training of service providers for people with disabilities, to enable them to enact the rights enshrined in the Convention (United Nations, 2006, 4f) This clause clearly places professions related to service provision, such as social work and social education, within a human rights context, and considers professional service providers participants in the realization of users’ human rights.

By emphasizing the right of people with disabilities to be included and fully participate in the social and political community on equal footing with others, the Convention clearly represents a powerful political and legal instrument for the implementation and promotion of active citizenship for people with ID (Lid, 2012).

Norway signed the Convention in 2006 and ratified it in 2013 (NOU 2016:17, 2016). Consequently, in 2014, a special commission was appointed with the task of providing a comprehensive analysis of the living conditions of people with ID in contemporary Norway, and of proposing policies for the implementation of the principles and obligations enshrined in the CRPD. In 2016, the commission produced the Official Norwegian Report (“På lik linje”), mentioned earlier in this chapter. This report provides a detailed and extensive account of the situation of people with ID in Norway, examining such issues as education, employment, healthcare for children and adults, accommodation, guardianship, political participation, and leisure time, as well as coercion, crime, and sexual life (NOU 2016:17, 2016). In addition, the appointed commission offered eight “boosts,” i.e. policy proposals, regarding autonomy and security under the law, equal and inclusive education, employment, healthcare, home ownership, the improvement of professional qualifications among staff, the coordination of welfare services, and improvement in management (NOU 2016:17, 2016).

In the report, the commission declared its commitment to the values of human dignity, equality, justice, and tolerance and based its policy proposals on the principles of normalization and non- discrimination, including universal design, autonomy, inclusion, and security under the law (NOU 2016:17, 2016). Regarding the situation of people with ID in Norway, the authors of the report, in their understanding of disability, followed the CRPD and explicitly declared their adherence to the relational model (NOU 2016:17, 2016).

6. Intellectual disability and religion: ethical and legal issues.

In the previous section, I provided an overview of the situation of people with ID in Norway, briefly outlining the state’s policies towards people with ID both before and after the HVPU reform, as well as changes in their living conditions during this period; I also introduced specific documents from international law and national policy that have played a key role in securing their rights.

I turn now to a discussion about a more specific issue, namely the ethical, legal, and political basis for the realization of the rights of people with ID regarding religion and religious practice. In fact, the majority of Norwegian policy documents related to people with ID do not concern religious issues specifically but refer to the international human rights conventions, which include religious freedom and the right to freedom of worship among the fundamental rights.

Norway’s central laws concerning the freedom of religion are the national Constitution and the 1999 Human Rights Act. The latter incorporated key international conventions, namely the European Convention on Human Rights (ECHR), the International Covenant on Economic, Social and Cultural Rights (ICESCR), the International Covenant on Civic and Political Rights (ICCR), the Convention on the Rights of the Child (CRC), and the Convention on the Elimination of All Forms of Discrimination Against Women (CEDAW).

The older version of the Constitution’s §2, along with the clause regarding the Evangelical Lutheran religion’s official status, guaranteed freedom of religion, while the (2012–2014) version of it declared that

[o]ur values will remain our Christian and humanist heritage. […] This Constitution shall ensure democracy, a state based on the rule of law and human rights [and that a]ll inhabitants of the realm shall have the right to free exercise of their religion. (Constitution 2008; 2, 16)

The right to worship and to practice religion freely (or abstain from doing so) is one of the central human rights, as it is a part of freedom of thought and conscience. The ECHR stipulates that

[e]veryone has the right to freedom of thought, conscience and religion; this right includes freedom to change his religion or belief and freedom, […] to manifest his religion or belief, in worship, teaching, practice and observance. (9.1)

At the same time, the ICCR proclaims that

[e]veryone shall have the right to freedom of thought, conscience and religion. This right shall include freedom to have or to adopt a religion or belief of his choice, and freedom, […] to manifest his religion or belief in worship, observance, practice and teaching. (18.1)

As these covenants are incorporated into Norwegian law, the latter, including the Constitution, represents a solid legal foundation for the protection of religious freedom and freedom of conscience in Norway. These legal norms, per definition, apply to all people, regardless of level of functioning, and should therefore include intellectually disabled people’s right to religious practice.

6.1. Religion and international disability rights: Standard Rules on the Equalization of Opportunities for Persons with Disabilities and the Convention on the Rights of Persons with Disabilities.

The UN’s Standard Rules provide a rather extensive set of guidelines for securing the religious rights and freedoms of people with disabilities. The entirety of Rule 12 (United Nations 1993) is dedicated to this issue:

States will encourage measures for equal participation by persons with disabilities in the religious life of their communities.

1. States should encourage, in consultation with religious authorities, measures to eliminate discrimination and make religious activities accessible to persons with disabilities.

2. States should encourage the distribution of information on disability matters to religious institutions and organizations. States should also encourage religious authorities to include information on disability policies in the training for religious professions, as well as in religious education programs.

3. They should also encourage the accessibility of religious literature to persons with sensory impairments.

4. States and/or religious organizations should consult with organizations of persons with disabilities when developing measures for equal participation in religious activities.

Though the document does not specifically mention people with ID and their religious needs, one can interpret its emphasis on the need to eliminate all discrimination in the religious sphere, and to make religious activities accessible, as applying to people with ID as well.

The Convention for the Rights of Persons with Disabilities, on the other hand, does not explicitly concern religious issues.9 However, Article 30 of the Convention focuses on issues of participation in cultural life, recreation, leisure, and sport (United Nations 2006). For instance, it specifies that people with ID should be ensured

(a) […] access to cultural materials in accessible formats

(b) […] access to television programs, films, theatre and other cultural activities, in accessible formats

(c) […] access to places for cultural performances or services, such as theatres, museums, cinemas, libraries and tourism services, and, as far as possible, enjoy access to monuments and sites of national cultural importance. (United Nations 2006, 30)

It is clear that among the different “cultural activities” and “places for cultural performances or services” mentioned in the Convention, one could include a number of practices usually designated as “religious.” Moreover, Point 4 in Article 30 emphasizes that “[p]ersons with disabilities shall be entitled, on an equal basis with others, to recognition and support of their specific cultural and linguistic identity” (United Nations 2006, 30.4)—for many, the religious practices and activities in which they participate clearly fall into this sphere.

Nevertheless, the Convention’s Article 4.1 explicitly declares an obligation for its state parties to defend and promote “all human rights and fundamental freedoms for all persons with disabilities without discrimination of any kind on the basis of disability” (United Nations 2006, 4.1), which clearly includes freedom of religion. As such, it has crucial importance for the realization and advancement of the right of people with ID to practice religion in Norway.

Although the Official Norwegian Report “På lik linje” is based on the Convention and represents an attempt at a detailed assessment of people with ID in Norway and ways to implement the Convention, not only is religion not mentioned in the nearly 250-page document, but the cultural issues raised in the Convention are insufficiently developed. Cultural activities are grouped together with sports, outdoor activities, and the like as “recreational activities” (fritidsaktiviteter), and are placed in Chapter 15, entitled “Leisure Time” (fritid) (NOU 2016:17, 2016). Moreover, even considered merely as recreational activities, cultural activities are given

9 The only mention of the word “religion” occurs in the Convention’s Preamble, where it is stated that the States Parties of the Convention are concerned about persons with disabilities who are “subject to multiple or aggravated forms of discrimination on the basis of race, […] religion, [etc.]” (United Nations 2006, p. 2) This statement, though in passim, nevertheless could be considered an important starting point for the acknowledgement of the right to religious practice for people with ID. 54 somewhat short shrift. However, the report does emphasize the social dimension of these kinds of activities, detailing their rich potential for inclusion, friendship, and personal development (NOU 2016:17, 2016). This dimension is no doubt important in the religiosity and religious practices of people with ID, but it is also true that other aspects, such as those connected to deeper, “inner” spirituality, are not included in the report.

6.2. Church of Norway and intellectual disability: Attitudes and policies.

Following its disestablishment as a state church, the Church of Norway remains influential among Norway’s religious organizations, and it has not ignored the issue of the religious rights of people with ID. In recent decades, the church has increasingly recognized people with ID as religious subjects. The church has also tried to engage and lead other religious organizations in its advocacy efforts. In 2007, the Church Council—the highest administrative organ between sessions of the General Synod—established a working group composed of representatives from the Norwegian Association for Persons with Disabilities (NFU), the bishopric of Borg, the Roman Catholic Church, and the Free Church Study Association. The group’s task was to produce guiding principles for the inclusion of people with ID into religious communities. Next, the Church Council, the Christian Council of Norway, and the Council for Religious and Spiritual Communities produced a booklet called “Participation and Affiliation: The Inclusion of People with Intellectual Disabilities into Faith and Spiritual Communities” (Deltakelse og tilhørighet. Inkludering av mennesker med utviklingshemning i tros- og livssynssamfunn) (Kirkerådet et al., 2009). This booklet was intended to be a declaration of principles, as well as a set of guiding rules for the inclusion of people with ID into faith communities.

By drawing on international human rights law and national legislation, including the Constitution, the Human Rights Act, and the UN’s Standard Rules, the authors of the booklet make a strong case for the rights of all people to worship and to engage in religious practice, independent of their (dis)abilities (Kirkerådet et al., 2009). They also emphasize the agreement around this issue among different religious traditions and communities, though they also acknowledge that “experience shows that there is a need to see if the practice corresponds to the teaching” (Kirkerådet et al., 2009, p. 9).

It is important to note that, in their concern regarding religious communities’ inclusion of people with ID, the authors of the booklet reject the paternalistic attitude towards them as simply recipients of assistance:

Adults with intellectual disabilities should be treated in the same way as other adults. […] We are all fellow human beings (medmennesker). Nobody is an “object of charity” for whom we have to do something. (Kirkerådet et al., 2009, pp. 10, 11)

The booklet instructs religious leaders to respect the autonomy and self-determination of people with ID and to adjust to their ways of participating in religious meetings and practices:

Not all people with intellectual disabilities are willing to be active in faith and spiritual communities. Some will participate occasionally, some more often, while some will not participate at all […]. People with intellectual disabilities not only have the right to be invited to different communities and activities. They also have the right to choose how they will participate. (Kirkerådet et al., 2009, p.13)

This quote shows that the booklet is based upon the recognition of people with ID as religious subjects, capable of active religious practice and of being full members of faith and spiritual communities, rather than recipients of charity.

The authors of the booklet acknowledge the importance of religious rituals for people with ID, especially for children, and state the importance of facilitating those rituals central to the life course: baptisms, naming ceremonies, confirmations, first communions, weddings, and funerals. Historically, people with ID were excluded from many of these, especially in the Norwegian, Lutheran context. This exclusion often signaled their societally perceived intellectual (as with Lutheran confirmation)10 and sexual (as with getting married and having children) inferiority. The facilitation of these central religious rituals for them is thus important in order to recognize them as religious subjects equal to others.

The same year that the booklet was published, the Church Council issued a statement entitled “Equality, Inclusion, Facilitation” (“Likeverd, inkludering, tilrettelegging”), a declaration of principles for the Church of Norway’s policy towards people with ID. Based on the General Synod’s 2004 programmatic document “The Church of Norway’s Identity and Mission” (“Den norske kirkes identitet og oppdrag”) the Council emphasized that the Church, as a community

10 In Norway, mandatory confirmation was introduced in 1736 and was accompanied by public examinations in the Catechism. To be allowed to take these examinations, the young person had to be able to read and write. Without confirmation attestation, one could not marry, serve in the army, be a godparent, or be a court witness (Dahle, 2010). Compulsory confirmation was only abolished in 1912 (Johnsen, 1984). 56 of the baptized in unity with God and each other, should be inclusive and open for all of its members, regardless of their abilities (Kirkerådet 2012). Here, the Church takes a clear stand, stating that the Christian faith is a gift from God rather than human intellectual effort, and thus it is given independent of one’s intellectual or communicative abilities (Kirkerådet 2012). This statement, though very much in tune with the Christian traditional understanding of faith, nevertheless breaks with a longstanding emphasis in Lutheranism on faith as the result of intellectual understanding.

Moreover, the Council insists that people with ID have their own contributions to offer the theological and spiritual life of the Church, because of their unique religious and life experiences (Kirkerådet 2012;4.). Their contributions are acknowledged as being so indispensable and important that “[a] church in which people with intellectual disabilities do not have the opportunity to be a part of a congregational community becomes itself a disabled church” (en kirke med redusert funksjonsevne) (Kirkerådet 2012; 6).

The statement professes the Church’s commitment to the religious freedom of people with ID; further, it insists that the Church’s mission is not only to open its doors to them, but also to stand up for their right to practice religion of all kinds, not just Christianity:

The Church of Norway has a double obligation, to defend the right to free practice of religion for persons with intellectual disabilities within other religions and faith communities, and at the same time ensure that its own members with intellectual disabilities can have a real opportunity to practice their faith alone and in community with others. (Kirkerådet 2012; 7)

Three years after the Council’s statement, the 2012 General Synod passed a resolution—entitled “Inclusion and Facilitation: People with Intellectual Disability in the Church of Norway” (Inkludering og tilrettelegging. Mennesker med utviklingshemming i Den Norske kirke)—in which they supported the Council’s statement and proposed a number of measures to implement it. The Synod requested that this statement should be made the basis of congregational work, and that the issue of inclusion of people with ID in faith communities should be included in congregational and diocese policy plans (Kirkerådet, 2012; General Synod’s Section 1). It also insisted that all Church organs ensure that people with ID have the opportunity to participate fully in the life of local congregations (Kirkerådet, 2012; 2).

Moreover, the Synod acknowledged that to facilitate the integration of people with ID into church life, the development of competent cadres and human resources at all levels of the church is important. It therefore encouraged all church educational institutions to improve

57 training in the relevant subjects and issues, both at the basic and the continuing levels of its training (Section 4). Moreover, the Synod requested that bishopric councils provide congregations with competent cadres (Section 5), as well facilitate cooperation between congregations, municipalities, families, guardians, and other involved parties to promote the realization of the religious freedoms of people with ID (Section 6). It is important to note that the Synod also challenged the secular authorities to expedite the process of ratifying the CRPD, which subsequently occurred in 2013 (Section 8a).

It is unsurprising that the Church met the Norwegian Official Report 2016:17 with criticism regarding its lack of concern towards religion, faith, and spiritual matters. In response to the report, the Bishop of Borg—while praising the committee’s “very good and thorough work,” and noting that the measures proposed “would doubtless […] lay the foundation for people with intellectual disabilities to have a real opportunity to live a dignified life”—lamented that the spiritual dimension had become a “silent dimension” in the document (Bishop of Borg 2017, p. 1). The bishop pinpointed that religious and spiritual issues should be included in an account of the living conditions of people with ID, and warned that if “this dimension is also omitted in further work, people with intellectual disabilities will practically be deprived of basic human rights and will be deprived of the opportunity to practice their faith or spiritual commitment (livssynsutøvelse)” (Bishop of Borg, 2017, p. 1). Moreover, the bishop emphasized that, even if the CRPD does not explicitly mention religion, both it and the white paper declare their rootedness in the basic internationally codified human rights—of which the right to freedom of religion, thought, and conscience are among the most central (Bishop of Borg, 2017). The bishop also noted that Chapter 30 in the CRPD (“Participation in Cultural Life, Recreation, Leisure, and Sport”) should be interpreted in such a way that religious and spiritual practice are included (Bishop of Borg, 2017).

As I have shown, the Church of Norway has produced documents that show a clear commitment to the rights of people with ID regarding religious practice, both within its own fold and the society in general. To implement these rights, the Church has officially acknowledged the necessity of improving the human resource base and the cooperation between families, legal guardians, and the municipal authorities. Moreover, the Church has clearly addressed the state policy towards people with ID, criticizing it for its lack of concern towards the religious and spiritual dimensions of human life. While none of this necessarily indicates the Church’s true practical politics, the presence of rules and officially approved guidelines is an important indicator of the institutional attitude towards the issue; further, in the case of this research, it

58 provides a foundation from which to explore informants’ attitudes towards the religiosity of people with ID.

6.3. National and global ethical principles and guidelines for social workers.

Apart from the national law, the professional practice of social workers is guided by a set of ethical principles, formulated as statements. In Norway, FO—the main trade union and interest organization for social workers—held its sixth congress in March 2015, in which it adopted a national code of ethics: namely, its Foundational Document for Professional Ethics for Child Welfare Officers, Social Workers, Social Educators and Welfare Coordinators (Yrkesetisk grunnlagsdokument for barnevernspedagoger, sosionomer, vernepleiere og velferdsvitere) (FO, 2015). In this document, the organization not only stipulates basic principles of professional conduct, but also provides an extended discussion of their character and application.

FO is a member of the International Federation of Social Workers (IFSW), which adopted its own “Statement of Ethical Principles and Professional Integrity” in 2004. In 2018, the IFSW joined with the International Association of Schools of Social Work (IASSF) in the adoption of a revised “Global Social Work Statement of Ethical Principles”. In addition, the IASSF endorsed a longer version of that statement (IASSF, 2018). Given that FO’s members are obliged to follow this code of professional principles (FO, 2015), I will not discuss these documents in detail. Instead, I consider only those principles reflected in each document that are relevant to this project, namely regarding safeguarding users’ religious needs and treating users as religious subjects.

Among the core principles of both the national and international codes of ethics for social work is respect for the inherent dignity of humanity (FO 2015; IASSF 2018), and the promotion of the right to self-determination (IFSW 2018, 4) and participation (IFSW 2018, 5). For instance, IFSW emphasizes that “[s]ocial workers respect and promote people’s rights to make their own choices and decisions, provided this does not threaten the rights and legitimate interests of the others” (IFSW 2018, 4), and that they “work towards building the self-esteem and capabilities of people, promoting their full involvement and participation in all aspects of decisions and actions that affect their lives” (IFSW 2018, 5). The documents are also clear about the duty of social workers to challenge

discrimination, which includes but is not limited to age, capacity, civil status, class, culture, ethnicity, gender, gender identity, language, nationality (or lack thereof), opinions, other physical characteristics, physical or mental abilities, political beliefs, poverty, race, relationship status, religion, sex, sexual orientation, socioeconomic status, spiritual beliefs, or family structure. (IFSW 2018, 3.1)

Another important issue reflected in the documents is that of a holistic approach to social work, which implies an attitude towards and the treatment of users as whole persons. FO’s Foundational Document, for example, stipulates that

[h]ealth and social work (helse- og sosialfaglig arbeid) assumes that there are many aspects of human life that have significance for one’s welfare […]. The practitioner must emphasize a comprehensive (helhetlig) approach to people who need […] multi-professional (tverrfaglige) services. (FO 2015, p. 6)

In the same vein, the IFSW’s Global Statement points out that practitioners must

recognize the biological, psychological, social, and spiritual dimensions of people’s lives and understand and treat all people as whole persons. Such recognition is used to formulate holistic assessments and interventions with the full participation of people, organizations, and communities with whom social workers engage. (IFSW 2018, 7)

In addition, this document states that all practitioners of social work bring their own backgrounds, including religious ones, to the work place, and should reflect critically on the interplay between their life histories and their professional practice:

As social workers we (as do the people whom we engage with) bring to the working relationship our histories, pains and joys, values, and our religious, spiritual and cultural orientations (my italics—D.L.). Critical reflection on how the personal influences the professional and vice versa must be the foundation of everyday ethical practice. (IASSW 2018, 1.4)

Both national and global ethical codes of social work closely follow international human rights. The IASSW version explicitly states its commitment to these “human rights instruments and conventions,” among which, for instance, the CRPD is named (IASSW 2018, 2.1, p. 3). Since the documents discussed are officially adopted ethical codes of the FO, of which the majority of Norwegian social educators are members, they should be taken into consideration when endeavoring to understand how study participants approach and realize users’ freedom of religion and right to religious practice. While not all of my informants are professional social workers or social educators, these standards can help contextualize their attitudes and practices.

In addition, exploring how they are reflected in the attitudes of practitioners with different professional backgrounds may provide further valuable insights.

6.4. Place of religion in social and welfare service workers’ education curricula.

The content of professional education and training represents another important part of the societal context within which social and welfare service workers enact their representations of the religiosity of people with ID. The CRPD’s Article 4.1(i) stipulates that the States Parties should “promote the training of professionals and staff […] in the rights recognized in the present Convention so as to better provide the assistance and services guaranteed by these rights” (United Nations, 2006, p. 39). This paragraph has a special importance for Norwegian policy towards people with ID, as well as educational policy more generally. If one recognizes that the right to faith and worship constitutes a basic human right, this paragraph obliges Norway as a state party of the Convention to ensure that professionals acquire necessary competence in these issues. This, in turn, implies that the national educational standards should include these fields of knowledge and competence, and thus that they be taught in the relevant educational institutions.

In this section, I examine the degree to which these fields are present in the officially adopted national educational standards and curricula. Since the aim of this chapter is to outline the normative frameworks that could (or should) influence staff perceptions regarding the religiosity of people with ID, I focus here only on the adopted standards.

The majority of the study participants I interviewed are trained social educators and social workers, thus the content of their training influenced their perceptions. Of course, many of the informants are neither social educators nor social workers, but represent a spectrum of professions and backgrounds, including those without any relevant training. However, I cannot examine the place of religion in the content of professional education and training of all of my informants. I therefore focus exclusively on the curricula adopted for social education in Norway, especially since some of them also apply to other professions within social work and healthcare.

Currently (until the academic year 2020–21), the social educator training is directed by a national curriculum, which was adopted by the Ministry of Education and Research on

December 1 2005. It consists of two parts: the general part, which covers all social and healthcare education and trainings, and a specific part for social education (Utdannings- og forskningsdepartementet, 2005).

Neither religion nor faith or spirituality (livssyn) is directly considered in the document. However, in the general part, the Ministry stipulates that one of the key goals of healthcare and social service education is to make students develop a “comprehensive (helhetlig) view of the human being, to show respect towards human integrity and rights and to safeguard users’ autonomy and rights to co-determination (Utdannings- og forskningsdepartementet, 2005, p. 3).” In addition, it is expected that at the end of their education, students will be able to “communicate with people with different ethnic, religious and cultural backgrounds” (Utdannings- og forskningsdepartementet, 2005, p. 4).

In the education-specific part of the document, one of the goals is for social educators to meet users of all backgrounds, independent of their culture, spirituality (livssyn), and world-view, with equal empathy and respect (Utdannings- og forskningsdepartementet, 2005).

The national curriculum also specifies the content of the social educator training, providing a list of main subjects and sub-subjects, together with corresponding credits. This list arguably cannot provide straightforward information regarding competence in matters of religion, as religious studies is not on the list. However, 12 credits are granted for sociology and social anthropology courses, which, according to the curriculum, should include “[c]ultural values, norms, living conditions and human rights” (Utdannings- og forskningsdepartementet, 2005, p. 5). Moreover, a subject titled “Environmental Work and Habilitation and Rehabilitation Work” (69 credits) includes the sub-subject “Communication, Interaction and Conflict Resolution” (15 credits), which, according to the curriculum, “should provide competence in communication with persons with different cultural backgrounds” (Utdannings- og forskningsdepartementet, 2005, p. 9).

From the 2020–21 academic year on, the national curriculum will be replaced by a new system of guidelines for higher education in healthcare and social services. The introduction of this new system is stipulated by the “Regulations on the Common Curriculum for Healthcare and Social Work Studies” (Forskrift om felles rammeplan for helse- og sosialfagutdanninger),

62 issued by the Ministry of Education and Research in 2017 (Forskrift om felles rammeplan for helse- og sosialfagutdanninger, 2017; Kunnskapsdepartementet, 2017).11

Compared to the 2005 national curriculum, the new guidelines (officially called “The Guidelines for the New System of Management for Health and Social Work Studies Education—Social Education” (Retningslinjer i et nytt system for styring i helse- og sosialfagutdanninger—vernepleierutdanningen) are more precise regarding issues of religion. According to these guidelines, future social educators should have

extensive knowledge about inclusion, equality and non-discrimination, independent of gender, ethnicity, religion and spirituality, disability, sexual orientation, gender identity, gender expression and age, so that the candidate [could] contribute to the provision of equivalent services to all groups in the society […] [as well as would] have extensive knowledge about conventions, laws, [and] rules […] to ensure [the] rights of people with disabilities. (Kunnskapsdepartementet, 2017, p. 3)

Moreover, Chapter 6 of the new guidelines names communication and cultural competence among the competencies the future social educator is expected to acquire (Kunnskapsdepartementet, 2017). Social educators are expected to use these competencies when planning activities and communicating with users and their dependents.

Although the document mentions religion and spirituality, it does not distinguish them as separate topics that social educator students should master. On the other hand, the document places a clear emphasis on competence in international human rights, including disability rights and issues of non-discrimination and equality, and it also mentions cultural competence, in which knowledge about religion and religious practice could be included.

Thus, both the 2005 national curriculum and the new guidelines are clear in their emphasis on a comprehensive, holistic view of the human being, as well as their commitment to the clients’ autonomy and rights. They also ensure that future professionals should be culturally sensitive and competent in their practice. However, the lack of attention to religion and spirituality as an important field of knowledge is also clear in both documents. This allows the educational institutions, and not least the university colleges, to decide the extent to which this subject will be taught.

11 According to Regulations §1 and §5, all educational institutions are permitted to follow the guidelines from autumn 2019 on. Starting with the 2020–21 academic year, the regulations become mandatory. The previous national curriculum will be completely repealed in 2026.

7. Research methodology and ethical reflections.

This thesis is built upon qualitative methodology and thus includes all the features typical of qualitative inquiry. In the chapter on epistemology, I discussed some philosophical underpinnings of qualitative research in general—for instance, showing the centrality of hermeneutics in this approach.

In this chapter, I will provide a systematic overview of the research method used in this project. I will start with a discussion about the focus group method, including my reasons for using this method and challenges connected to its applicability to the research material. Next, I will discuss the selection criteria used for informants and groups, as well as challenges and difficulties that emerged during the recruitment phase; I will then turn to an overview of the groups and their workplaces, which I refer to as “locations,” and reflect on how each interview went.

Afterwards, I will outline the procedure used to analyze the data, i.e. the transcribed recordings of the interviews. Starting with the more technical phase of coding, condensing, and categorizing the texts, I will finish the chapter with a discussion of their deeper interpretation. I will also touch upon ways of using and applying theory to the data in the context of this research.

7.1. Method of focus group interview.

Focus group interviews can be defined as a method of data collection through group interaction around a topic provided by a researcher (Morgan, 1996; Halkier, 2010). This implies that the source of data in this technique is the discussion participants have with one another, while the researcher creates this discussion solely for data-generating purposes (Morgan, 1996).

One of the key differences between focus group interviews and other types of group interviews is that, while it is common for semi-structured types of group interviews to emphasize active collaboration between the interviewer and informants, in the case of focus group interviews, communication between interviewer and informants is minimal—indeed, the main emphasis is on the communication between the informants themselves (Halkier, 2010). A researcher who conducts focus groups is thus more a moderator and facilitator of the discussion than a questioner or interviewer. Accordingly, the number of questions in the interview guide and their

65 precision is lesser in the case of focus groups than in other types of group interviews. In addition, unlike some types of group interviews, focus groups are characterized by the fact that it is the interviewer/moderator who selects the subject of the interview (Halkier, 2000).

The reason for the decision to employ this method is twofold. To begin with this method can be adapted for a relatively large amount of data combined with a large number of informants. In other words, focus group interviews can provide an easier way to cover a greater sample of people who constitute the object of research (more about this is in the section on representability). Next, my aim to interview the staff as professional groups (people that work and make decisions together), and to conduct the interviews at their workplace made it more natural to select this method. In this context, the staff members would be speaking not only as private individuals with opinions about the theme of the research, but also as members of the professional collective placed in the specific social context of their workplace. One theoretical underpinning for this is that a great deal of humans’ meaning-making takes place as part of their social experience (Halkier, 2010). In other words, my intention was to facilitate an environment in which informants would identify their opinions about their perceptions of the religiosity of people with ID by discussing them with their colleagues, within their work environment. Moreover, a significant part of the interview guide deals with the facilitation of religious practices for “their” users, and is especially relevant for this kind of interview. It should be noted that the application of a focus group methodology to the study of religious matters might raise some objections. Issues related to religion can be sensitive, especially in the Norwegian cultural context, where they are treated as a highly private matter. This then could have a potentially negative impact on the data provided by the focus groups, if informants were reluctant to talk about these issues in the presence of their colleagues. This is certainly a valid point; however, it was not my goal to ask the informants about their own religious beliefs or practices, but rather about their attitude towards the role of religion in their professional practice in general, as well as their attitude towards the religiosity of the service receivers. Nevertheless, it is possible that the interview questions, and the way in which they were asked, led the informants to experience them as directed to their personal relationship to religion. It could also be argued that this type of study could be more extensive if focus groups were combined with individual in-depth interviews. However, the latter were outside the scope of this project due to time constraints.

A final potential limitation to the chosen methodology is that the focus group interviews I conducted resembled “common” group interviews more than focus groups in the stricter sense.

This may be due to my lack of experience as a moderator (which I discuss later), and to the fact that the focus groups proceeded differently, and had different outcomes, than I expected. Indeed, in many cases the actual group sessions were quite distinct from the “ideal” focus group, as participants both frequently addressed and responded directly to me, with often inadequate communication with each other. At the same time, parts of some sessions were more in line with the focus group “ideal.”

Clearly, all interviews have their shortcomings. For example, the focus group method cannot assume a perfectly controlled interview setting, as this method by necessity deals with human unpredictability. As such, this method should be thought of as a kind of ideal towards which a researcher can and should strive without necessarily achieving it. I therefore suggest that the interviews I conducted during this research should be considered as more or less resembling the ideal focus group. Moreover, it is important to note that, even when an interview developed in a direction away from the “ideal,” it still provided highly relevant and interesting data.

7.2. Sampling process.

Unlike quantitative sampling, where this procedure is used to construct material representative for and generalizable to the general population, the principle of selection in qualitative research is to elucidate certain aspects, features, and dimensions of the social world, to provide deeper understanding of key features of social life by looking at small pieces of it (Neuman 2014). In this section, I give an overview of the approach to and process of sampling in this project and my rationale for both.

My intention was to conduct focus groups in residential homes (shared accommodations) and day centers in Oslo and southwestern Norway. My rationale for choosing southwestern Norway as one of the study locations lies in the fact that this region’s Lutheran Christianity is historically characterized by strong pietistic low church influences.12 The main selection criteria was that

12 For example, in their study of the regionalization of Norwegian religiosity between 1991 and 2008, Botvar, Repstad, and Aagedal (2010) show that the earlier regional differences in Lutheran Christianity persist to a certain extent today, between Oslo and Akershus County on the one hand and Agder and Rogaland on the other. Botvar and Aagedal (2002) categorize the Lutheran religiosity that dominates in Agder and Rogaland (in southwestern Norway) as “association or awakening Christianity” (forenings- eller vekkelseskristendom), while inner eastern Norway is characterized by “folk church piety” (folkekirkelighet) (Botvar & Aagedal 2002; Botvar, Repstad & Aagedal 2010, p. 49). Botvar, Repstad, and Aagedal (2010, pp. 51, 206) use the categories of “church-based piety” (kristenkirkelighet)—with variables such as belief in God’s care and monthly churchgoing—the aforementioned “folk church religiosity” (folkekirkelighet), and atheism (referring here to a secular, non-Christian attitude). 67 focus group participants should have diverse educational and professional backgrounds, and that at least some should be without relevant professional training; it is a common practice for the residential communities in Norway to employ both trained staff (e.g. social workers, social educators, and nurses), usually as full-time workers, and assistants who have no formal education in healthcare or psychosocial work. My assumption was that staff members with relevant formal training might have different background beliefs about the religiosity of people with ID than staff recruited “off the street.” This inference was based to a certain extent on my reflections about the assumptions and presuppositions I held when I began working as a part- time assistant at a residential home. In addition, when mentioning the research topic before the start of this study, a former colleague responded with doubt that users have any religious aspirations or needs.

In Oslo, I selected one shared accommodation and one day center in which to conduct interviews. Furthermore, I wanted to conduct focus group interviews with staff members of a Christian faith- and value-based residential home. The reason for this was again a background assumption—namely, that the home’s value profile might somehow influence the staff’s attitudes towards the religiosity of people with ID, and that such a place might have more incentives to be concerned with the religious activities of and for the users.

In other words, the principles of selection used here could be seen as a form of quota sampling (Thagaard 2011; Neuman 2014). Indeed, I first identified the relevant categories, namely educational background and territorial location, which in turn formed a foundation for the recruitment of informants (Neuman 2014). This approach to sampling is useful because it lets a researcher hear the diversity of voices from different contexts and backgrounds, make strategic “probes” into these contexts, and see connections between informant’s attitudes and ideas and their cultural, territorial, social, and educational backgrounds. At the same time, one cannot make generalizations that the data from individual informants or trends within the sample are representative for the whole category. It is impossible to make such conclusions because the qualitative sampling method does not provide random selection (Thagaard 2011).

According to these authors, southwestern Norway (Agder and Rogaland) scores highest in “church-based piety,” while Oslo is the most “atheist” region (Botvar, Repstad & Aagedal 2010, pp. 53–54).

7.3. Recruitment of informants.

The recruitment of participants of the focus groups had been a quite challenging process. No municipally-owned homes had any contact information publicly available, which meant that I had to call or e-mail the districts’ social service departments and ask them for information. Moreover, to get access to potential informants, I had to get access to the homes’ managers.

However, the social service department of one district declined my proposal, while another district’s social service department gave me the phone numbers of all the homes for which I requested contact information—but the managers of these homes unanimously declined my offer. Their explanation was that they had no opportunity to participate and that their employees would not have compromised their free time for my research. While we cannot be certain of the reason for their unwillingness, perhaps we might interpret it as a reflection of how issues connected to religion are not considered of much importance.

All obstacles notwithstanding, I did receive a positive response from a day center and a residential home (shared accommodation), whose managers had been very helpful, kindly providing information about this study to their employees.

Finding a study location in southwestern Norway, on the other hand, presented no such problems, thanks in part to my co-supervisor, who contacted the municipal administration, which then immediately provided me with a location willing to participate in the research.

7.4. Interview structure and interview guide.

In this section, I will provide a sketch of the structure of the focus group interviews and give an account of the questions/discussion topics I developed. It should be noted that I present here only the initial design of the sessions rather than a discussion of how the interviews proceeded. (I will discuss the latter in the next section.)

The structure of the focus groups basically follows the guidelines presented in the literature (for example, Halkier (2010)). The plan for each interview was to start with an introduction; the introduction is an important part of a focus group session because it not only presents the aim of a researcher to the participants, but also establishes the rules of conduct for the whole group (Halkier, 2010, p. 60). I therefore started each focus group with a general presentation about

69 myself and, when they were present, my co-moderator (my supervisor for three of the focus groups and my co-supervisor for one). I then invited the participants to introduce themselves, sharing their name, age, professional background and how many years they had worked. Given that the form of the focus group interview may not have been well known to participants, I then explained the characteristic features of the focus group interview, as well as their rights as interviewees. Next, I reminded the participants that, as healthcare professionals, they were bounded by professional secrecy, and that it was our shared responsibility that no information about specific users would arise during the sessions. Finally, before proceeding to the main discussion topics, I asked the participants to say a few words about their service users (i.e. how many and what ages).

The main principle I chose for the interview guide was to start with open and general questions and gradually approach more concrete ones (Halkier, 2010). Therefore, the guide opens with questions about what religion means for the participants, including for them as professionals, and about what they think religion and religiosity might mean for their users. One question deals specifically with participants’ views of the religious freedom of people with ID. The guide proceeds then to more concrete questions, including those concerning the religious activities practiced in the study locations and how these are viewed by the participants. One of the questions asks participants to imagine themselves following a user to a religious service and to reflect on which roles they think they would take on and identify with during such an activity. To assist the participants, three examples of such roles are presented: a person who is present during a service only to look after the user, an interested observer, and an active participant. The final question of the interview guide asks about the extent and forms of cooperation of the study locations with the Church of Norway and other religious organizations.

The questions of the interview guide are aimed at addressing the three research questions that I presented in Chapter 1. For example, initial questions about the informants’ views of religion in general and then specifically with regards to the users addresses RQs 1 and 3, while the third question provided data that helped me answer RQ 2.

The final stage of each focus group session was intended to be a debriefing, in which I would offer a brief summary of what had been said and invite the participants to provide any additional remarks or comments.

The questions of the interview guide had been sent to the informants prior to the focus group sessions in order to give them the opportunity to reflect on them in advance.

7.5. Descriptions of the locations and reflections on interview situations.

In the following section, I will describe how the initial design of the focus groups, presented in the previous section, was implemented in real-life interviews. First, I will consider the overall picture, reflecting on the differences between the initial design and the outcome. Next, I will give a short description of each focus-group session, focusing on the locations, the informants (along with their backgrounds), and how the sessions proceeded. It should be noted that all informants have been anonymized and appear in this dissertation under pseudonyms.

7.5.1. General considerations. As I have mentioned earlier, the actual focus group sessions appeared significantly different from my initial plans and expectations. This could partly be explained by the fact that I had no prior experience in conducting and moderating focus groups, having previously only conducted individual interviews. I therefore found this type of interview to be rather demanding, particularly since it required me to focus on several things at the same time: asking questions, listening and observing carefully, making notes, and debriefing at the end. In addition, the moderator role was somewhat challenging, because I am a non-native Norwegian speaker and a relatively shy person.

With regards to the basic structure of the interview guide, I more or less followed it. I began with an introduction, followed by a presentation round, a description of the rules of a focus group interview, and an explanation of the participants’ rights as informants. I then proceeded to the main questions and concluded each session with a debriefing. Sometimes, however, due to obliviousness or stress, some peripheral parts of the design may have been omitted.

It was around the interview guide questions that I experienced the most difficulty, specifically with regards to formulating them orally in such a way that they would initiate the most fruitful discussion and, thus, thicker data. Again, this was due mostly to language problems and my own inexperience. Moreover, and perhaps more problematically, was that (as I mentioned earlier) many of the informants talked to me, rather than conversing with each other. This could be explained partly by the participants’ lack of familiarity with this method, as they seemed to be inclined to answer the questions instead of discussing them, and partly by my own

71 uncertainty as a moderator. However, it should be said that a number of the informants did participate in discussions, with considerable success in terms of data production.

To record the conversations and participants’ responses, I used a Dictaphone. I had initially planned to take notes during the sessions, but due to my inexperience and inability to focus on several tasks simultaneously, I soon realized that I was unable to write down anything meaningful. I therefore decided to drop note-taking altogether, focusing on listening to and following up conversations instead. This contributed to the difficulty I experienced around summing up the sessions during the debrief.

I moderated the first focus group alone. During the second and third focus groups, my supervisor joined me, and my co-supervisor assisted me during the fourth focus group. While I tried to lead the discussion, they took notes, came up with additional remarks and follow-up questions, and then debriefed the groups at the end. With their kind assistance, I was able to improve the quality of the data collected at the other locations.

7.5.2. Location 1. The first focus group took place at a residential accommodation for people with ID, which was part of a Christian and diaconal faith-based organization.

This was my first focus group (apart from a small pilot focus group, the data from which is not included in this research), and I moderated it alone.

The group consisted of five informants, all of them women:

• Christine, social worker (sosionom)

• Hilde, social educator (vernepleier)

• Ingrid, nurse

• Mona, no relevant education/background

• Victoria, background in psychology and special education

With the help of the location’s leadership, the session turned out to be very well organized. We sat in a quiet, separate room, screened from any outside disturbances. At the same time, as this was my first focus group experience, as well as my first experience interviewing in a group

72 setting, I was a bit more nervous than normal, and that may have made both asking questions and moderating more disorganized than necessary.

7.5.3. Location 2. This session took place at a municipal residential home in Oslo. Both residents and the staff were multi-cultural and multi-religious, in a certain sense resembling the neighborhood in which the home was located.

I was pleasantly surprised when the home manager found my project interesting and agreed to distribute information about it among the staff. We agreed on a day for the session, but, when my supervisor and I arrived, it turned out that she had not done much to prepare for it, so we had to recruit informants on the spot.

Moreover, the session did not go quite as I had expected. We sat in an office, with people who were not participating in the session often present—coming and going. While I expected to have an approximately one-hour session, it turned out that none of the participants could stay longer than three-quarters of an hour, and a few had to leave after a very short time. All in all, the session seemed to be rather messy, chaotic, and brief.

In total, five people participated in the session:

• Soraya, social educator, in her 20s

• Trine, leader/home manager

• Kai, social educator

• Peter, junior nurse (helsefagarbeider)

• Aisha, no relevant training

However, it was only Trine, Aisha, and Soraya who remained for the whole session, as the others were present and participated for shorter periods of time. However, these three were very active participants, and with their help, this focus group proved to be one of the most interesting and fruitful.

This focus group was moderated jointly by myself and my supervisor. Unique to this location was the fact that the home manager participated in the group, and did so quite actively. Her presence may be seen as important in the sense that her position definitely influenced her

73 outlook and the way in which she expressed herself; moreover, she, by virtue of her authority, may have affected other participants’ utterances and the dynamic of the group.

7.5.4. Location 3. The third location had its own idiosyncrasies. First, it was a day center, and not a residential home, which meant that the daily routines and activities for the users were different, including regarding religious activities. For instance, in the evenings and on Sundays and holidays—such as Christmas and Easter—the users were not present. Second, it was a place in which I myself had worked, and I knew some (though not all) of the informants.

There were six informants in the group, of whom two could not arrive on time. They worked in another section located quite far from the interview location, and had forgotten the appointment; as such, they were late and arrived near the middle of the session.

Six informants participated in this focus group:

• Marie, social worker

• Lina, social educator

• Vera, social educator

• Karen, bachelors in social work

• (Arrived late) Yvonne, social educator with diaconal training

• (Arrived late) Pål, newly employed substitute for someone else

This session went quite smoothly, except for a small disturbance in the conversation when the late arrivals entered the room: one of the newcomers, Yvonne, threw herself eagerly into the discussion, which somewhat disrupted the session. She was quite active the rest of the time and seemed very interested in the discussion, so it was unfortunate that she was unable to participate in the first part of the session, when we discussed e.g. the participants’ attitudes towards religion both within and outside of their profession. We sat around a table in a quiet room, with no significant disturbances from the outside.

7.5.5. Location 4. The fourth session, as I had initially planned, was conducted in a shared accommodation for people with ID in a small town in southwestern Norway.

Four members of the staff participated:

• Anine, no relevant training (bachelors in political science)

• Marte, junior nurse (helsefagarbeider)

• Siv, social educator

• Marie, child welfare officer (barnevernspedagog)

I moderated this group together with my co-supervisor. We were placed in an employee room, around a table; it was lunchtime, and many interviewees ate their lunch during the session. I was initially a bit concerned that eating a meal (not just drinking coffee or having snacks, as happened during the other sessions) might make understanding more difficult. This proved not to be the case: instead, for me, as a non-native Norwegian speaker, the problem was the local dialect spoken by all of the informants. Though I had no difficulty understanding their speech during the session, it was challenging to transcribe the recording of the session in detail.

7.6. Procedures of analysis

In discussing the next stage of the process of research, namely the analysis of the collected material, I think it is important to remember that qualitative methods do not have a linear, “recipe”-type procedure. While a researcher has much more freedom in managing the data, the flip side of the coin is that she must find her own way towards a meaningful analysis and be able to argue in support of the approach she has chosen. Therefore, it is important for me here to discuss my approach to analyzing the material, while drawing on the general principles of analyzing qualitative data.

It must be noted that, in the context of this project, it is difficult to speak about analysis merely as a stage that can be neatly separated from, for example, “data collection” or “discussion.” Qualitative research, as Norman K. Denzin phrases it, “is characterized by a ‘fluid, interactive

75 relationship’ between data collection and data analysis (Denzin, 1970 in Lee & Fielding, 2009, p. 533). Analysis, in a certain sense, has already begun during the interview, when the moderator/interviewer tries to understand the interview situation; often, an immediate impression regarding participants’ body language or how they are reacting to questions can have significant importance in further work. However, for the sake of convenience, I outline below the main steps of analysis I employed in this project, starting with the completed focus group sessions and recorded interviews:

• Listening and transcription of the recorded interviews, i.e. converting speech (and, additionally, non-verbal material like body language) to written text

• Initial processing of the data, i.e. coding and categorization with the help of code-and- retrieve software

• Meaning condensation of the coded material

• A deeper interpretation of the text

It is important to note that the use of theory here was not bounded to a specific step or stage. Theoretical reflections were present during the whole process, at least on a tacit level. Nevertheless, the stage in which I employed the theoretical framework explicitly was the final one.

7.6.1. Methodological approach: Induction, deduction, or abduction?

To begin with, it is important to outline and discuss the scientific method I employed in this research. While quantitative research—which deals with calculable, measurable data—requires the derivation of hypotheses and predictions from theories and the testing of them (i.e. the hypothetico-deductive method), qualitative approaches sometimes start from the particulars (i.e. data) and develop theoretical generalizations on their basis (i.e. has an inductive character) (Thagaard, 2010).

However, this assessment has two problematic issues. The first is the general limitation of inductive reasoning. Indeed, it is impossible to make conclusions with any certainty about unobserved events on the basis of observed events, regardless of how many there are (Danermark, 2002). In other words, from an observation that social educators X, Y, and Z hold certain attitudes, one cannot conclude with certainty that all social educators in a population hold those same attitudes.

The other issue concerns induction in the sense of a sort of empirical study that starts from observing empirical data and then moves towards a theoretical framework, rather than the other way around; in other words, theory does not precede or guide the study of particulars but is instead derived from them (Neuman, 2014). This approach is characteristic of grounded theory in its classical form (Alvesson & Sköldberg, 2009; Pidgeon & Henwood, 2009). The problem here lies in what I have already discussed in the chapter on epistemology. It is deeply problematic to insist that any kind of theory-neutral, presupposition-less study can exist. In hermeneutically oriented qualitative research, self-awareness around a researcher’s background assumptions are especially important. All empirical activity must address and reflect upon its theoretical foundations and presuppositions, making them not only transparent and controllable, but also useful as heuristic devices to guide the researcher through the data and its interpretation (Danermark et al., 2002; Kellner, 1995). A third way, however, between a rigorous deductive procedure and mere empirical generalization of induction, is abduction, which could loosely be understood as the interpretation and recontextualization of the empirical material within a broader theoretical framework (Danermark et al., 2002). It is sometimes interpreted as implying a dialectical interaction between theory and data (Thagaard, 2010). Indeed, in a qualitative study, one cannot make sense of the data without an interpretative framework. However, crucial in the process of conducting such a study is a phenomenologically informed looking at “the things themselves.” A qualitative researcher lets her informants (and, therefore, the data) speak for themselves as much as possible. It means that she is open towards the data and lets it guide the process of inquiry. The data itself can provide clues for a theoretical/interpretative framework that might be useful for making sense of it in a different way. Thus, the researcher uses theory to shed light on and make sense of the data, while letting it show her not only new and more productive understandings, but possibly also new and more interesting theories. Moreover, once again, we have placed ourselves in the hermeneutical circle, moving constantly between theory and data, whole and part, general and specific.

7.6.2. Transcription.

As all focus groups were recorded, I spent a significant amount of time transcribing them. While I agree that qualitative interview data, being a product of a living conversation, cannot be reduced to transcripts (Brinkmann & Kvale, 2015), I have nevertheless used these transcripts as the primary source material for this research.

As long as the main focus of analysis in this study is on meaning, rather than on language use, the emphasis in the transcription was placed on the verbal component of the speech, rather than the prosodic (the ways in which the words were spoken) or paralinguistic components (non- verbal vocal behavior) (Kowal & O’Connell, 2014). In other words, I tended not to reproduce such vocal features as laughter (except through notations like “[the informant] laughs”). I did note pauses when they seemed to bear special significance (for example, once, after hearing my question, informants sat for a few seconds in silence, seeming a bit like they were embarrassed and did not know how to answer).

As I have already mentioned, the transcription of the focus group conducted in southwestern Norway posed a challenge to me as a non-Norwegian speaker because of their dialect. I had to consult others, especially my co-supervisor, to help with understanding certain words, expressions, and the informants’ accent.

7.6.3. Processing the data. The next stage of the analysis may be thought of as “the analysis proper,” because it directly concerns what is often meant by “analysis”: namely, separating the material into components. This process begins with the step I have termed “initial processing.” I began by reading the transcripts and trying to find thematic patterns. Given that the group interviews were intended to facilitate conversation between the informants, there was little structure, and discussion topics often glided into each other. Indeed, a single informant could reflect on several issues in one remark. This meant that topics of conversation had to be carefully assessed during this analytical step, and each topic given a label. This label then became a heading, under which similar data from each focus group were categorized. These became the primary data categories.

The literature on qualitative interview analysis usually refers to this strategy as “coding” (Brinkmann & Kvale, 2015; Thagaard, 2010; Neuman, 2014). It plays an important role in grounded theory, where it refers to “the process of breaking down, examining, comparing, [and] conceptualizing the data”—and is often termed “open coding” (Strauss & Corbin, 1990, quoted in Brinkmann & Kvale, 2015, p. 227). Although this project does not use grounded theory, nor is it exclusively inductive, it uses a coding strategy, because this provided the opportunity to listen to the details of the data, following the hermeneutical circle from the whole to its parts.

The establishment of primary data categories, however, represents only the initial phase of data processing. After that task was completed, I attached those codes/primary categories to more

78 general categories, which were essentially (slightly modified) topics/questions from the interview guide. I did so not only to sort the material in an effective way, but also to gain a broad conceptual overview of it, even if the informants’ utterances on the topic appeared in a different context. Thus, the general categories are, in a certain sense, concept-driven, because they are based on topics established before the interviews, while the sub-topics are codes derived from the data itself (Brinkmann & Kvale, 2015, p. 227).

In my procedure for data processing, I used the code-and-retrieve software program NVivo extensively. This digital tool was quite useful for my work, providing a convenient and timesaving way to not only code and categorize the transcribed material, but also to manage the data in further work.

For the sake of clarity, I will here provide an example of the codes and categories that I constructed. Note that, originally, following the language of the interviews and transcripts, I constructed the codes in Norwegian, while the general thematic categories are in English. Here, for the sake of convenience, I will present them all in English. The thematic categories are rendered here in bold.

1. Religion for the informants a. Religion—personal relationship b. Religion as a common denominator c. Religion as a set of rules of life d. Religion as faith 2. Religion for users as perceived by the informants a. Significance of ritual activity b. Usage of the word “God” c. Distancing from religion d. Death e. Community f. Understanding of religious practices g. Mapping religious needs h. Coziness/good time (kos) i. Culture and upbringing j. Knowledge of religion k. Religiosity depends on users’ capabilities l. Religiosity depends on users’ language abilities m. Religious background

The next step of the analysis, namely “meaning condensation,” has an even stronger focus on details than coding. Here, I basically followed the procedure as it is outlined by Brinkmann and Kvale (2015). Its main feature is to take abridgements—chunks of text—based on the initial coding and create a short, condensed summary of each (Brinkmann & Kvale, 2015, 234–235). The aim of meaning condensation is to identify the key meaning of each of the chunks, i.e. to delve into an even more detailed level than in the preliminary coding and categorization. This method is helpful for gaining access to the meanings of the chunks of text in their condensed form without requiring re-reading.

Here, my approach was not to cut out small chunks and connect short summaries to them, but rather to take the largest parts of the interview transcripts (sometimes entire dialogues), which were coded under one heading, and to give them a series of shorter or longer summaries. In other words, this resulted in less-fragmented and more-connected material.

The primary benefit of coding, categorization, and meaning condensation lay in helping me handle the massive amount of transcribed material and providing me with a better overview. It better enabled the thematicization of the material, and offered a starting point for its interpretation. It should be noted, however, that this step appeared to have only a limited significance for the next, purely interpretative, stage. Even the general, interview-guide-based categories, which had originally been intended as the basic topics for analysis and interpretation, had to be partly revised and modified (though they proved useful initially). While they do appear as sections and subsections of Chapter 8, they are in a significantly revised form. The primary codes, of which I have given examples in this chapter, likewise do not appear explicitly in Chapter 8. The data appeared to be too fluid and multivocal to squeeze into codes.

7.6.4. Interpreting the data. As qualitative understanding is based on a hermeneutical, interpretative approach, I have been involved in interpretative activity throughout the project. However, the step of analysis I turned to after coding and categorization, has interpretation of the data as its core purpose.

Its aim is both to go deeper into the meaning of the informant’s words and expanding the view, i.e. to place these words in the context of the interviews as a whole; of the utterances of the

80 informants in other sessions; and of the informant’s educational and cultural background. It is essentially at this stage that I directly employ theories as interpretative devices.

It is difficult to outline this stage of the research project in an orderly, systematic way, as it is a continuous, fluid process that is not always easy to divide into steps. I will thus provide a simple overview—a presentation of “my way of doing” the interpretation of the focus group interviews.

I begin with those bits of the text I have coded and categorized. It is important to note that my analysis of the material has a thematic character, i.e. I considered it by topics/categories, and not by, for example, cases. Therefore, I began with the thematic categories, the construction of which I have already described. Taking each category separately, I went through all of the codes/primary categories and parts of the text that they correspond to. I was thus able to read through all of the informants’ utterances from each of the focus groups about the same topic, compare them, find contrasting issues and ideas, etc. This part of the analysis consisted of carefully reading the transcripts, during which I tried to closely follow the data. However, as I have already mentioned, I did not stay with the codes and primary categories much longer—as data are fluid, bits and pieces of the text could not always be neatly placed under a certain thematic category. As such, these thematic categories served as springboards for further interpretation. For instance, a number of primary categories were analyzed and considered under different topics than those under which they initially been grouped. Moreover, some of the general, interview-guide-based topics were revised, because the data did not follow them orderly.

A central part of the interpretative analysis phase was also the material’s contextualization and recontextualization. Here, I placed the informants’ ideas and thoughts in a broader socio- cultural context, and applied theoretical approaches to them. This aspect of the analysis did not in fact constitute a separate “part”: I turned to context(s) throughout all aspects of the work in this stage, analyzing and interpreting specific utterances and dialogues, comparing and setting them against each other, and summarizing the entire topic, as well as discussing the material as a whole.

7.7. Ethical issues.

Any kind of human science needs to have a special focus on and reflection around research ethics. Regarding qualitative research, ethical issues are especially relevant. Indeed, this kind of research usually implies face-to-face encounters with a limited number of people, with whom the researcher enters a morally significant relationship. This relationship is profoundly dialogical, because the process of construction and acquisition of knowledge in qualitative research cannot be attained without informants’ collaboration. Qualitative research, especially that which is ethnographic and phenomenologically inspired, ultimately represents “subject– subject” relationships, instead of the “subject–object” relationships found in the natural (and to some extent quantitative social) sciences. As such, ethical requirements for qualitative researchers often go beyond the usual standard for ethically sound research (Mertens, 2014).

Ethical issues connected to qualitative research in general, and interviews (including focus group interviews) in particular, can be roughly categorized into two groups:

• Issues concerning the process of inquiry, which include recruiting informants, conducting interviews, producing and analyzing the data, and publishing the research results. • Issues connected to the practical effects of the research, its role in contributing to emancipatory practices, the empowerment of marginalized groups, and the enhancement of human rights and social justice (Mertens, 2014).

The first point has both legal and ethical implications. As legal norms obviously constitute an overall framework for any kind of research, I do not discuss this issue here. On the other hand, some ethical norms are clearly stipulated in official guidelines for research—in the case of Norway, these are The Guidelines for Research Ethics in the Social Sciences, Humanities, Law and Theology, issued by the National Committee for Research Ethics in the Social Sciences and the Humanities (NESH, 2016). I followed these guidelines in this research and though I do not provide a detail account of them, I will discuss the application of some of the key elements from this document to this study. I will then consider some ethical dilemmas I encountered during the research process.

The most central and fundamental ethical norm on which any research in human sciences must be based is an absolute respect for human dignity and personal integrity. This norm therefore

82 overrides any possible utilitarian attitude. As the Guidelines clearly and strongly emphasize, “this means that the individuals have interest and integrity, which cannot be set aside in research in order to achieve greater understanding or to benefit society in other ways” (NESH, 2016, B- 5). This is also in accordance with an aforementioned basic feature of qualitative research, namely that of treating informants as co-participants in knowledge production.

To follow this ethical guideline, it was important for me to follow other key social research guidelines, such as respect for privacy, informed consent, and confidentiality (NESH, 2016, B- 6–9). An information letter was sent to all institutions via e-mail, describing the background and goal of the research, what participation in the research would entail, how information obtained would be processed and stored, and that participation was voluntary. Potential informants were also notified that all the data collected in the interviews would be anonymized and that they were free to stop participating in the research at any time.

The problem I encountered here was that it was the leaders of the institutions rather than the individual employees who received these letters. I did not recruit most of the locations and their staff from within my personal network, but rather by trying to find contact information through publicly available sources. Therefore, I had to rely on managers to distribute the invitation to participate in the project. In other words, it was the managers who, in practice, recruited individual employees for me. As such, I cannot rule out whether the latter’s right to free, informed consent was disregarded, or if some other form of pressure to participate was placed on them.

Though I sincerely hope that nothing like this happened, there were some issues that I witnessed myself that might raise doubts. At Location 2, as I mentioned earlier, it turned out that the home manager had not distributed information about my project before my arrival. This moment might be looked at as somewhat problematic from the point of view of the informants’ consent. Though it was clear to me that those who participated in the session did so voluntarily, the lack of proper organization around obtaining consent (i.e. enabling staff members to have the time to consider their participation thoroughly) could have led to a tacit power imbalance. Moreover, the manager was present during the group session: could this have influenced informants in their responses?

As mentioned above, I began each session by informing the participants of their rights, as well as explaining that all the data would be strictly anonymized and thus no part of it would be passed on in such a way that the participants could be identified (NESH, 2016, B-9). I also

83 informed them that some of their utterances would be included in the dissertation in the form of quotations, and that they had the right to prevent this.

In connection to my efforts to follow this ethical guideline, however, I encountered dilemmas. For example, some information about the participants’ workplace (i.e. the location of the focus group) appeared to hold significance for my research, but its use would have made it possible to potentially identify the location and thus the focus group participants. To put it simply, one of the locations—namely, the faith- and value-based one—was important to my research precisely because of its religious- and value-based orientation but was the only one of these in the area. Therefore, even disclosing only its profile, without giving its organizational name, could have jeopardized the anonymity of the informants. Moreover, other specific features of this institution, which were discussed during the focus group session and seemed important for the project, could have made the informants’ privacy even more vulnerable.

To solve this problem, I contacted the home’s administration regarding this specific issue. Eventually, as a result of an agreement with the management and my own considerations, I omitted any indications of where this home is located, as well as all other information that would make it easy identifiable, while retaining the marker “a Christian faith- and value-based residential home.”

Another ethical challenge I encountered—and, I must admit, possibly did not resolve adequately—is connected to questions that may have been experienced as too personal by the informants, such as those about their personal religious persuasions and beliefs. One of the introductory questions at each focus group session was “What do you mean by religion? What does religion mean to you both personally and professionally?” Though what I intended with this question was to ask informants about their understanding of and attitude towards the phenomenon of religion, it could have easily have been misinterpreted as being about the participants’ personal religiosity. This is, in fact, what happened. Informants began telling me about their own personal religiosity or lack thereof, their religious identity, and more. In the cultural context of Norway, these kinds of questions might easily have been felt as too personal. While it might seem that the word “personally” in this question was to blame for this confusion, even in those focus groups where I changed the wording, some informants nevertheless provided me with information about their personal relationship towards religion.

That being said, despite the potentially sensitive character of this question, I decided to use this data anyway, handling it with care and sensitivity, and omitting quotes that expose informants’

84 most intimate issues. It is also important to note that any tacit pressure from me as the moderator to discuss these issues notwithstanding, all participants had the opportunity to abstain from responding to questions they found too intimate. In addition, the use of this kind of data was approved by the Norwegian Center for Research Data (NSD).

In addition to the researcher’s duty to respect individuals, the Guidelines note the duty to respect groups and institution, including vulnerable groups (NESH, 2016, C-21). It is clear that people with ID constitute a vulnerable group; even if they do not constitute an object of the research, they must also be given special protection as a third party (NESH, 2016, B-13). Therefore, to safeguard their rights and interests as thoroughly as possible, I instructed the informants not to provide any personal data about the people with ID with whom they worked. They responded that they had complete awareness and understanding of such a requirement because they were bound by professional secrecy. However, as became evident during the data analysis, some informants did give examples of what individual users had said or done. I have included some of these data into this dissertation, but only those that do not contain personally identifiable information.

To conclude this chapter, I must say a few words about the second group of issues I outlined at the beginning of this chapter, namely those concerning the broader ethical and political context and consequences of research like this, and, more precisely, the role this study can play in emancipatory practices. I consider these issues highly relevant to my project, because its topic is closely connected to advocacy for people with ID and to notions of citizenship, empowerment, and self-determination. Although in this project I do not explicitly take a stand regarding whether religiosity is beneficial to people with ID, I consider the issue of their religious subjectivity highly important, because it constitutes a part of their fundamental human rights, including that of their democratic self-determination. I therefore consider my project as an attempt to contribute to the empowerment of people with ID as citizens in general and as people with the right to make decisions, or at least to participate in the decision-making around their religiosity and religious practices.

8. Analysis.

In this chapter, I turn to the analysis of the material. As I have already mentioned, my aim here was to follow the data closely, letting it speak while attempting to understand it.

As I have already mentioned in the previous chapter, the structure of this chapter does not completely correspond to the topics in the interview guide or to the general categories of the initial analysis. Although I intended them to be basic themes of the analysis, in the course of analysis I had to revise and even abandon some topics, when the data did not neatly follow them. In fact, the voices of my informants were so manifold that it was difficult to unequivocally put them into boxes. Therefore, the main themes that represent the headings of this chapter diverge somewhat from the topics of the interview guide.

I begin this section with an overview of the different ways of practicing religion in the study locations. I then turn to the themes concerning the informants’ personal understanding of religion and their reflections on religion in relation to their self-understanding as professionals. I include here also my analysis of what they do to safeguard service users’ right to practice religion and meet their religious needs. Finally, I take up the central topic of the interviews: namely, how the participants viewed the religiosity of those for whom they provided care.

8.1. Practicing religion.

In this section, I will present general information from the focus group participants about the religious activities and practices they arrange at the locations or with which they assist users in performing. It should be noted that I am not questioning what makes these practices religious, nor am I concerned with how the informants characterized their nature. Instead, I have based this overview on a somewhat pre-reflective notion of religion, looking at the practices and activities the informants seemed to immediately associate with this notion.

I will also include data about the location’s cooperation with any kind of religious organizations. Finally, in the conclusion of this section, I will focus on the role played by the users’ family members and relatives in the service users’ religious life.

8.1.1. Collaboration with religious organizations and institutions. Each of the study locations, independent of profile and ownership, were connected in some way with the Church of Norway. Location 1 had the tightest connection with the Church because it was part of an institution with a faith-based profile. This institution had close organizational connections with the Church, employed their own pastor, and were connected to the local congregation of the Church of Norway.

The other study locations had similar relationships. The staff at Location 3 provided the users with the opportunity to attend services and other events organized by the local congregation. During Advent, the users, assisted by the staff, collectively went to church. In addition, they would invite a pastor to their facility for certain occasions (e.g. holidays). Karen described how happy the users would become upon the pastor’s arrival:

[The pastor] is also invited here when […] it is something, when it is a holiday (fest) or something, [and when he comes] there are some users who know him, but [they] can’t communicate with plain words (ikke kan kommunisere med rene ord, i.e., do not have verbal language ability), [so] they approach him and hug him, pull on his clothes, […] because he is a popular person and it is he who sings […].

Location 2 seems to have similar arrangements. Trine described their facility’s connection and cooperation with the Church of Norway as follows:

[…] We have an attachment to a church in our district, and we are invited, [they] arrange a special service for our group, which we participate in, there are quite a few who participate… They [the local church] always send us a program, which is adjusted to our users, they are open and available if we need [them] or if any of our users need a pastor […].

Likewise, Location 4 also had a relationship with the local Church of Norway congregation. Location 4’s staff members explained that the congregation actively informed them about masses and other activities and invited the residents to participate. They also mentioned that one of their residents worked part-time in the church, and seemed to play the role of contact- person:

Anine: [We have a] resident who [attends the church because] she works there in a sort of child…

Siv: It is something like ASP (noen sånn SFO-lignende)…

Anine: She’s helping with baptisms and stuff…

Marte: But when […] the church has a high mass, […] they would like our residents to join and assist, and some of [the congregation] hand out leaflets, brochures…

Marie: Invite us to baptisms and stuff…

[…]

Siv: They come to us here.

Marte: They come to us here with posters and leaflets […] It is she who goes to the church and to ASP, we have contact with her in the church, she is a contact person. So, either I ask her, or we just call them and ask, [or] they come and ask. There are usually not very many at home during the daytime, so they usually come in the evening and ask if someone wants to join. So, they ask, like, well in advance, because [the residents] need some time to think about it… if they want to go or not. I think they also mention it during those services.

However, unlike the informants at the other locations, the staff at Location 4 never mentioned visits from a pastor. I suppose, based on the data, that the pastor was not invited.

Thus, the data show that the only religious organization systematically, and through their own initiative, cooperating with the study locations was the Church of Norway. It provided pastoral visits on a regular basis and actively engaged the users to attend, or even actively participate, in services. It is plausible to suggest, then, that the policies of the Church of Norway’s congregations reflect the Church’s officially adopted principles, which I discussed in Chapter 6.2.

It is notable that, although there are adherents of other faiths among the users at the study locations, there is no organized collaboration between these users and “their” faith communities. Here one can see parallels with religious service in similar public institutions like hospitals and nursing homes. In fact, before 2014, the Church of Norway had the almost exclusive responsibility of serving the public institutions, while ministers from other religious and spiritual organizations were called in when needed (Schmidt, 2015a, p. 128). This system, however, is gradually changing, with increasing representation of other faith and life stance communities. It is important to note, however, that the Church’s relationship with different public institutions is different and depends, among other things, upon whose initiative the ministers are invited or hired (Schmidt, 2015a, p. 128).

In nursing homes, the situation is similar to that of the locations I have examined, namely that they are generally connected to a local congregation of the Church (Schmidt, 2015a, p. 128).

However, large nursing homes, especially those in big cities, have their own nursing home priests with special qualifications (Schmidt 2015a, 128).

Norwegian hospital chaplaincy is still largely Lutheran, with the exception of several central hospitals in Oslo and Trondheim, which in recent decades have invited few chaplains and counsellors from other religions (Schmidt, 2015a). Here, it is generally the institutions themselves that hire the religious personnel according to their needs (Schmidt, 2015a; Schmidt, 2015b). However, hospitals often present the chaplain’s functions as independent of any particular faith, often anchored in such services as counseling (Schmidt, 2015b).

Nevertheless, this kind of “special relationship” observed at the study locations, as well as the Church’s still-dominant position within many public institutions, reflects both the historically privileged role of Lutheranism as Norway’s state religion, and its contemporary constitutional status as the country’s folk church. I will discuss this issue, and how it could potentially affect users’ right to practice religion, more thoroughly in Chapter 9.

8.1.2. Celebration of holidays and other activities I now turn to a description of the religious practices and activities arranged at the study locations, most of which were arranged around public holidays with a religious tradition, namely Christmas, Easter, and Ascension Day. Among these, Christmas—more specifically, preparations for Christmas during Advent—were most central. (Indeed, Christmas Eve and Christmas Day did not seem to be significant events at any of the locations; Location 3, as a day center, was closed on Christmas holidays, and in the residential homes most of the residents went to their families for Christmas.) The staff at Location 3 reported feeling that Christmas lasted the whole of Advent:

M: Can you talk a bit about religious holidays at your day center? Do you celebrate them, and, if so, then how?

Lina: [We] decorate for Christmas! (Laughs).

[…]

Karen: We decorate for Christmas, and then we have Advent activities (Adventstund)

Vera: Yes.

Lina: Four Mondays.

[…]

Lina: …‘til Christmas.

Vera: And it’s a very pleasant atmosphere there, with music and songs, Christmas carols (julesanger).

Karen: Yes, and we also read the Advent book. [We have] Christmas all December.

Furthermore, they described activities very common to Norwegian public kindergartens and elementary schools, including baking gingerbread, making Christmas cards, and organizing Christmas workshops.

Karen: […] [W]e bake gingerbread (pepperkaker). Make gingerbread houses, arrange Christmas workshops, prepare Christmas cards. In addition, we go downtown to a Christmas market with those who are interested, or to another section of our organization, which also organizes a Christmas market, [we go there] with those who want to.

Visits to a local church usually also took place during this period.

At the same time, some of the informants expressed a certain reservation about holidays like Christmas, because the preparation for and celebration of them could be too stressful for some users, especially those who needed clear and repetitive routines. Marie, for example, acknowledged that it was sometimes difficult to adapt the needs of those who did better with routines to those who looked forward to, for example, Christmas:

Marie: You can […] feel the dilemma […] that […] for [some] users they are very difficult, these holidays. [At the same time] we have users who need to talk about how they are looking forward to Christmas and so on … I feel it’s a sort of dilemma, [that] for some users it could be difficult even to talk about these issues, but some [are really looking forward to it].

At Location 2, it seemed that the culmination of the Christmas period was the dinner at the facility. Soraya explained that the festive meal was also a central event of Easter:

Soraya: Around Christmas, I have participated in most of the celebrations we have had here— around Christmas and Easter, we gather the residents and create a menu for th[ese] period[s], [I mean for] Christmastime and Eastertime, we create a menu [adjusted to] who can eat what, so we could have a good time and celebrate […] so when the residents [see] that now it’s December, [it means that] it is good food, the atmosphere (stemning) is good, food is good, everyone is dressed up, so at least they know what time [of the year] it is.

Trine: And Christmas decorations, of course.

Soraya: Yes, Christmas decorations…

Trine: …and everything that comes with it. And there are usually things that happen in the church, for those willing to participate […].

In contrast to the staff at Locations 2 and 3, the informants at Locations 1 and 4 did not provide a detailed description of celebrations around Christmas, Easter, or other holidays, nor of any other specific religious activities and practices. However, some relevant information emerged during data analysis. As I mentioned earlier, Location 1 had a close connection to the Church, and masses and services were conducted on a regular basis. Furthermore, devotions (andakter) were conducted regularly, as well as certain “devotional lunches” and missionary evenings. Of Location 4’s activities, however, I know even less, except that some residents regularly attended church and the congregation actively communicated with Location 4.

The staff at all of the locations indicated that almost all of the practices and activities they facilitate are connected to the Church of Norway. At the same time, some of their users do not belong to it and indeed some adhere to other faiths. The data are not very clear about these latter, except for the mention of Muslim users at Locations 1, 2, and 3. Soraya and Aisha, Muslims themselves, described how the Muslim residents celebrated Id al-Fitr:

Soraya: We have two Muslims here […]. Around Id [al-Fitr], they are used to being taken [by family members or relatives], we dress them up a bit, so they celebrate Id and come back, because the celebration lasts only one day.

Aisha: …[They] celebrate with their family…

Here, we see that the staff members at Location 2, though the location had a close relationship with the local parish, entrusted that the families of the residents with minority religious backgrounds would meet their religious needs. The staff, for their part, ensured that residents from Muslim families were provided with halal food.

At Location 3, similarly, there was some mention of Muslim dietary practices:

Karen: With those like the man I am thinking about, it is a wish of his parents that he should go to church, because there is a party [after the service] but if [they serve] sausages, then [they should not be made of] pork […].

8.1.3. The role of relatives and family members in users’ religious practices. Family members and legally appointed guardians play a very significant role in the life of people with ID in Norway. Study participants also note their role in the organization and facilitation of religious practices and, generally, in the users’ religious life.

Families of users are often the primary sources of information about their religious background and life, and therefore users’ religious needs. At least in some of the study locations, after a resident moves in, the staff will interview his or her family members, and religious matters are discussed at this time, if only as part of a background interview. For instance, the family members are expected to inform the staff about any religion-based dietary preferences, or if a religious minister outside the Church of Norway, for example an imam, should be contacted. Informants at Location 4 mentioned this during the focus group:

Siv: We have this background interview about where the residents come from, from a relief center (avlastning) or [directly] from home, […] we get information about [if they practice any religion].

As I have mentioned, most of the users at the study locations went with their families for Christmas; the Christmas celebration itself was thus considered by the staff to be a family affair. At the same time, informants at Location 1 reported that, apart from the centrality of this specific holiday for Norwegians, users’ families were seldom directly engaged in their religious life. One of the reasons for this, according to Victoria, is that most of them lived far away:

Victoria: […O]ur residents attend […] the confirmations of family members, baptisms, weddings. Nothing other than that, as far as I know—the families of most of the residents do not live in [this] area, so it would be an effort if they were to attend Sunday services. They participate in what their families do, not more, at least as far as I know.

At Location 2, Aisha and Soraya explained that when it came to Muslim festivities like Id al- Fitr and Christian holidays like Christmas, the families are responsible:

Aisha: [The residents] celebrate [Id] with their families…

Soraya: [Yes, they] celebrate with their families. Regarding Christmas (kristne jula), most residents celebrate [it also] with their families. […]

Ingrid from Location 1 similarly noted that it was the families who arranged celebrations of religious holidays outside of their usual program: “[…] it’s the families who pull it together (drar i gang), also if it’s something extra or outside of common Christian traditions […].”

8.1.4. Summary. From the data obtained from the focus groups, it is clear that each location had a well- established connection to and collaboration with the Church of Norway, mostly through local congregations and regular receipt of pastoral services. Moreover, all locations engaged in typical Norwegian holiday traditions like gingerbread baking, decorating, and preparing for Christmas, and even singing Christmas carols during Advent or attending church. However, not all locations’ users were members of the Church of Norway, or even Christians. Indeed, informants at Locations 1, 2, and 3 reported that some of their users were Muslim. The staff noted that they provided food to these users in accordance with Islamic dietary requirements, but any celebration of Islamic holidays, such as Id al-Fitr, was the responsibility of their families. Similarly, the users at all of the locations primarily spent Christmas itself with their families, and the staff seemed to consider that any religious practices associated with Christmas were the families’ responsibility. Although the data are somewhat limited, the impression here is that users’ families have the responsibility of arranging any religious activities, outside of common Norwegian practices related to specific holidays and services provided by the Church of Norway.

In this section, I have provided some basic information about the religious practices and activities arranged at the study locations, as described by the informants. At the same time, this data raises several interesting questions. How are such activities as gingerbread-baking and carol-singing understood by the staff? Could too much focus on practices that constitute a part of a Norwegian Lutheran tradition lead to the neglect of users’ freedom of religion? What does the staff think about the influence of relatives and family members on users’ religious freedom? I will consider these and other questions in the following sections of this chapter. First, however, I turn to the staff’s own views on religion.

8.2. Staff members’ attitudes towards religion.

Here, I will present the informants’ understanding of religion as a phenomenon. As I have previously discussed, it is notoriously difficult to provide an exhaustive definition of religion. My approach was therefore to give the informants an opportunity to come up with their own (pre)understandings of what constitute religion. I would argue that the informants’ personal understanding of the phenomenon of religion and its role in modern (Norwegian) society may

93 shed light on their understanding of the religiosity of the users, or at least provide important background information for this study.

Although, as I discussed in Chapter 7 (Section 7.7), this topic’s intention is (and was) to explore staff members’ attitudes towards religion as a general phenomenon, and not to probe their personal religiosity or lack thereof, the wording of the questions have led many informants to tell me about their personal relationship to religion. Nevertheless, I regard this data as interesting and useful, especially since it may shed light upon their understanding of the religiosity and religious practices of their users. However, in representing this rather sensitive and delicate information, I handle these issues with care.

The majority of the staff members expressed a rather distanced relationship towards religion. They tended to either say vaguely that they were religious, emphasizing their interest in religious matters without specifying much about their religious identity and belonging, or that they had “no personal relationship” to any religion. Many reported that they belonged to the Church of Norway.

I expected that study participants at Location 1, a group home with a Christian and diaconal profile, would express particularly strong interest in and engaged attitude towards religion. Contrary to my expectations, however, their stance towards it was rather reserved. Some of them vaguely hinted that they were religious and belonged to an unspecified faith community, while others emphasized that they had no special attachment to any religion. As expected, many informants were members of the Church of Norway—some said that they had been married and baptized their children in the Church but were not frequent churchgoers. They viewed the Church of Norway in a mostly positive light, noting its growing inclusiveness and openness. Some, however, said that they had opted out of the Church.

Unlike the informants at the other locations, the informants at Location 2 were generally much less hesitant and more definite when we spoke about their stance towards religion. While Soraya and Aisha said that they were believing and practicing Muslims, Trine said that she was a Christian who converted as an adult, while Kai openly stated his non-religiosity and atheism.

I had an interesting and somewhat unexpected reaction to the question about religion at Location 4, which is situated in a small town in southwestern Norway, popularly known as Norway’s “Bible Belt.” As I have already mentioned, this group home had been selected precisely because of its location in an area historically characterized by a low-church type of Lutheran religiosity, which, I might have guessed, may have influenced the staff’s background

94 assumptions. However, when I asked the group what they thought about religion and how they understand it, there was a moment of silence and confusion, after which one of the participants said, somewhat hesitantly: “We have no relationship to religion” (“Vi har jo ingen forhold til religion”). This hesitation, and the generalizing “we,” may be viewed as a good illustration not only of the attitude of this focus group, but also of that of many other informants. Indeed, with the staff members at each location, except perhaps Location 2, I felt a certain reluctance on their part to speak about this, not necessarily because of its intimate character, but mostly because the informants do not often dwell on or discuss these issues. It seems that, for them, religion in general and the religiosity of their users in particular is not a priority issue.

A number of the informants connected religion with a “belief in something larger, something eternal, beyond […] this physical life,” with the church, or emphasized the importance of its ethical dimension. Some of the participants at Location 4, when asked about their immediate associations regarding the word “religion,” understandably replied “church.” At the same time, several members of the staff at Location 3 placed a rather strong emphasis on religion’s social dimension. For them, the Church of Norway is important because it provides the opportunity to meet each other. One informant expressed this in the following way:

[…A]nyway, it is something in society (ligger liksom i samfunnet), that people go to church, [for example] with a school, celebrate St.Lucy’s day, [attend] Christmas concerts, [and also] my own children went to all those Christmas services, I think it [provides] an excellent sense of unity (samhold )…

This emphasis on the social dimension of religion among the staff at Location 3 also has importance with regards to their understanding of the religiosity of their users, which I discuss later.

Looking at this picture as a whole, it is clear that the informants appear to have very diverse understandings of religion. Some connected religion with faith, including faith in the Transcendent, some connected it with the Church, and some accentuated religion’s social dimension. At the same time, they may be seen as a particularly good reflection of contemporary attitudes towards religion in Norwegian society. It should be remembered that, while approximately 70% of the Norwegian population are members of the Church of Norway, according to a 2008 survey, a significant share was unsure or unable to define themselves as either religious or not religious (Statistics Norway, 2018; Botvar, 2010, p. 22). Similarly, as I have shown in Chapter 5 (Section 5.1), a significant share of the population never attends

95 church services, apart from baptisms, weddings, and funerals, while only a minority (7%) goes to church monthly (Botvar, 2010, p. 17).

Thus, quite a few participants of this study seem to represent both the state of “believing without belonging”—a notion coined by British sociologist of religion Grace Davie (Davie, 1990), which designates an individualized, unchurched form of modern religiosity—and, even more so, its inversion, “belonging without believing.” At the same time, the minority of informants declared their atheism, while others described themselves as practicing and/or believing Muslims and Christians.

8.3. Staff members at work: Views of professional practice.

In this chapter, I will discuss the informants’ reflections on their professional practice in light of both the religiosity of their users and the users’ right to practice religion. This essentially concerns two interconnected issues, and this chapter is therefore divided in two sections. In the first section, I will look at how the informants understand themselves as professionals encountering users’ religiosity. In the second section, I will discuss the informants’ awareness of the religious freedom of people with ID as well as issues connected to the informants’ efforts to secure the enactment of those freedoms. This chapter aims to address both a part of RQ 1, namely what religion means for the staff members’ professional practice, and RQ 2, namely how users’ religious freedoms and rights are secured and enacted by the staff. In addition, some of the material I will explore in this chapter will prove a helpful starting point for answering RQ 3, regarding staff members’ perception of people with ID as religious subjects.

8.3.1. Staff members’ views of themselves as professionals encountering religion. A professional service-provider is, on the one hand, expected to be guided by professional ethical standards, the paramount of which is respect for the service receiver’s autonomy and self-determination. Her professional practice should be based around the realization of the basic human rights of people with ID, particularly the way in which these rights are laid out in the UN’s “Standard Rules on the Equalization of Opportunities for Persons with Disabilities” and the CRPD. At the same time, each service provider has their own perceptions regarding how these rights should be realized. They also have different views about the ways in which they (should) use their professional skills in ensuring that service receivers’ religious needs are met.

In the following two sections, I will discuss the staff members’ views regarding their users’ rights and freedoms within the context of religion, and their assessment of how they realize them in practice. In this section, I will also explore how the study participants viewed themselves as professionals during their encounters with religiosity among service receivers. First, I will look at the informants’ reflections around whether their backgrounds might influence their work. I will then provide examples of the roles they imagined taking while facilitating their users’ religious practices.

During the interviews, some informants reflected on the ways in which a professional’s own religiosity might influence her practice. For instance, some of them expressed an awareness of the complexities of being both a believer and a care professional at the same time. Some indicated that one’s faith, as a staff member, could be a useful professional resource. Yvonne from Location 3, for example, recalled having been asked to provide counseling to some users because of her background in diaconal studies. She also used to take one of the users to church during her free time: “[It] had been arranged in a way, that I took […] [user] to church […], in the afternoons and evenings.” Hilde, from Location 1, stressed that staff members had the professional obligation to prioritize their users’ religious needs over their own personal beliefs, but also suggested that a service provider’s personal religiosity could empower him or her as professional:

[I] think, that [as] we are a diaconal organization, […] it plainly means that when you work [you] must respect these values, ensure that residents can attend services irrespective of which faith you yourself have. I think it is basic for our work, [at the same time] I think that if you are Christian or religious you could perhaps draw extra advantage from that religious service if you are there and [participate] and it would perhaps be of great value for both users and that staff member.

At the same time, the idea shared among the informants of all four focus groups was professional neutrality and placing user’s interests ahead of one’s own. Within this context, I wanted to explore how the informants would respond to the following: I asked that they imagine a scenario in which they were accompanying a resident or user to a religious service or any other kind of religious activity. I then asked them to define the role they thought they would play in this situation. I provided them with suggestions in the form of three options—1) someone who merely accompanies without involvement, 2) an interested observer, and 3) a participant—but most of the informants used their own definitions. A number of the informants from Location 3 defined this imagined role as that of a companion (ledsager). It was Vera who

97 used this definition in response to Karen’s rather blunt assertion that the only purpose of being with a user during a (religious) activity is assistance:

Karen: First of all, you are at work, so you must be at the user’s disposition…irrespective of the conditions you are in (uavhengig av rammen rundt), you are there for the user. Not to observe, or see, you are there for that person.

Vera: It’s more like a companion (ledsager). To me. As long as you don’t have any connection to the place [of worship] or…

Karen: First of all, you are there for the user.

Vera: A companion.

Karen: I think it’s the same as when we accompany a person to a swimming pool, it’s not for my own well-being that [we] go [there], I must make sure that my user will put on a swimsuit, feels good in the water, it’s my job, isn’t it? I am not there to have a spa day.

Vera: Yes, it’s more like a companion.

Karen: Yes, I think, a companion, you are there for the user.

Here, it appears that Karen is critical to the whole question, perhaps reacting against the very possibility of doing anything other than just being there for and assisting the user. It is interesting, at the same time, to look at Karen’s example of assisting a user during the latter’s visit to a swimming pool. Her remark could be interpreted as strongly emphasizing setting aside one’s own interests in favor of those of the user. Placing this in the context of the question at hand, does this mean that she would exclude the possibility of being herself a participant, a co- worshipper with the user? That, according to her, the staff’s own religiosity should definitely be set aside? On the other hand, it is not quite clear whether she would deny that a religious staff member—someone for whom the place of worship means something personally—might also, in addition to her professional commitment towards the user, participate in the religious service alongside the user. In this case, Vera’s remark (“[a]s long as you don’t have any connection to the place [of worship]”) addresses this point. This raises the (unanswerable, within the scope of this project) question as to whether this attitude reflects Karen’s personal relationship towards religion.

One might also question Karen’s denial of the observer role. What does she mean when she states that the staff member accompanying the user to a place of worship is not there “to

98 observe, or see”? Perhaps this may simply have been an unintended slip of the tongue—not uncommon in focus group sessions.

Marie, too, stresses neutrality as one of the staff members’ main professional obligations:

…What I would say […] regarding the professional work is that it is [important] to be neutral [regarding] one’s own faith, or to support users’ views and beliefs, [it] should be important for users’ freedom of religion […].

At same time, she appears open to the possibility that a professional might use her faith or specific competence as a resource:

You can also think [about]…who you would like to accompany to such an arrangement, [I] think that perhaps it’s not strange that the user accompanies you to your activities, because you’ve been dedicated (engasjert) [during the service], know the psalms perhaps … So it could also play a role, I think, even if you are there to support the user in the things the user needs [support in], but, perhaps, if you are of the same faith, for example, it’s not easy to say, but to contribute with something extra, I don’t know, it’s not easy to say.

Here, Marie, while stressing the centrality of being an assistant and a supporter—a parallel with the self-identified supporter role assumed by other informants, which I will discuss later—sees the possibility of involving one’s personal faith, religious knowledge (i.e. knowing the psalms), or commitment as resources that could positively contribute to her work.

Some informants from other locations sound similar to Karen. Christine from Location 1 suggests that a key part of her job is to assist residents, according to their needs and predispositions:

I think that the most important thing is that we are at work, we are here to facilitate for residents themselves, […] perhaps, […] the residents could [be able to] receive holy communion, … the residents are a bit different, but not equally able to live independently (selvgående), so we have to help [them] understand what is happening and if you enjoy being present at a church service, it’s fine, but […] we are there first of all for the residents themselves.

Thus, Christine, too, is arguing strongly for the primacy of professional loyalty and subordinating one’s personal interests to safeguard the residents’ interests; here, her words are completely in tune with those of Vera and Karin (“we are there for the residents themselves”; “you are there for the user”). However, as I will show later, she sees her role differently than two of her colleagues at Location 3, and places much greater emphasis on participation.

In contrast, Ingrid, in the same focus group as Christine, believes that although she does not enter into discussions with residents or follow up with them regarding their understanding of what happened during a religious service, she does participate actively in the resident’s religious activities:

[…I] think that [at least regarding those] I have [worked] with, […] I [understand] what has been said [by them], but I [also] think that it is useful for me. In addition I can reflect upon whether it was good or not, and [regarding] roles, I think […] you are a participant anyway, you observe and reflect upon what happened and what did not […]. But I don’t go into a sort of discussing role with the resident and don’t say, like, “did you get the point of what she just said?” I don’t take this kind of role, but you are a participant, because […] it is like [if] you organize a Christmas workshop with [the residents], you are participating, you are not sitting passively, you converse with them.

Hilde agrees with Ingrid, and adds that she thinks that if a staff member accompanied a resident to a religious service, she should take part in the rituals one way or another, whether or not she herself was a believer. She considers it disrespectful towards the service not to participate:

You are participating [anyway, if you are] in the church—you do not sit, like, mute, or you don’t sit still because you don’t want to sing. I think most, independent of faith, would participate out of respect for the church space (kirkerommet), right, or fold one’s hands. […] I would do that with my user—if the user wants to fold hands, I’d do the same.

Ingrid thus identifies her professional role in this imagined scenario as both participant and observer. Moreover, both she and Hilde emphasized that delivering real professional assistance implies participating in religious activities alongside the service receivers whom they are assisting.

At first glance, the contrasts between the positions of Karen and Vera from Location 3 seem striking. For instance, Karen’s parallel of attending a religious arrangement with that of accompanying a resident to the swimming pool suggests that, for her, these types of activities are essentially the same, or at least should be for the staff. She seems to downplay the significance of religious activities within the context of her work as a professional. For Hilde, on the contrary, the roles assumed by a professional assistant in the context of these activities seem to be different, because of the importance not only of meeting users’ needs, but also of showing respect towards the (sacred) space and religious rituals. Ingrid, at the same time, gives an example of another activity, a Christmas workshop, in which it is virtually impossible not to

100 participate; she does emphasize, however, that she would not assume a “discussion role,” by which she seems to mean a position similar to an educator.

However, through closer examination of the positions of these four participants, one cannot help but conclude that Hilde and Ingrid are not necessarily contradicting each other. Indeed, Hilde’s emphasis on a staff member’s participation in religious practices out of respect for these practices and the places in which they are performed does not necessary imply an involvement of the staff member’s personal religiosity. In other words, drawing again on Karen’s swimming pool parallel, the staff member must by necessity participate in the activity with the user and abide by the rules of the place, for example putting on a swimming suit instead of jumping naked into the pool. Thus, I suggest that the participant role, which Hilde and Ingrid felt suited them best, and Karen’s role actually supplement each other, and that, had they been discussing these issues in the same focus group session, they would have easily come to an agreement.

Christine, for her part, suggests that her definition of her role in this imagined scenario depends on her own religious and cultural background and would be different depending on the context:

… You are participating on a certain level anyway, plus we are also there, cooperating, but there would certainly be a difference between me [being] at a [church] service, or [being] in a mosque, for example. At a [church] service I personally would be more participating, while in a mosque I would have been more cooperating (samhandlende) with the resident […]. A prayer would not [in the latter case] be a prayer from me to God […], as it could be during a [church] service, […] but I don’t think that it would be visible externally, but internally [I would be] participating…

In this quote, Christine is emphasizing two things. First, in line with Hilde and Ingrid, she is suggesting that a professional service provider is, at a certain level, a participant. Second, she is defining herself in two ways: as a participant in the context of Christian (perhaps, only Lutheran) worship, and as merely one cooperating in the context of non-Christian religious practices, such as in a mosque. Her reason for this differentiation is the lack of involvement of her own personal religiosity in the latter case. Here, she understands participation as not only some outward, practical activity, which both Karen, Hilde, and Ingrid might have subscribed to, but also that which implies an involvement of a more personal, deeper sort.

Based on the above quote, and some of her other utterances, I suggest that Christine emphasizes professional neutrality and a facilitating approach but, at the same time, acknowledges that a staff members’ inner beliefs, convictions, and dispositions might make her feel like a participant in certain situations, and a non-participant in others. 101

Aisha, at Location 2, identifies herself as occupying the role of a supporter; in this role, she listens rather than talks, and is careful not to impose her own views on residents but instead tries to learn from them about their needs by asking questions and giving them the opportunity to reflect:

I think you’ll be a supporter. You don’t say too much, because your point of view should not influence their point of view. So, you are a supporter, you listen to what they mean, perhaps ask some questions to make them think a little bit, just to make them reflect on what they are doing and what they want.

Her position is in line with the positions of Karen and Vera, as she also emphasizes neutrality and non-interference as the main professional virtue. She is also pointing towards the idea that the service provider should always be available to any user she assists. At the same time, she also adds that, for her, it is important to motivate users to reflect on their own.

Participants at Location 4, particularly Siv and Marie, show a similar commitment regarding always putting users’ interests at the center. At the same time, their response regarding the role(s) they might take on while assisting a resident at a religious activity is that it is up to the service receiver to decide which role the service provider should take. Siv thinks that if the resident wanted her to be a participant, she would participate; otherwise, she would just accompany the resident and observe:

Siv: I think that if a resident needs that, we [as] the staff should participate so that [the residents] would enjoy [the arrangement], so I would be a participant, to involve (få med) the users, [and] if a user only had a need for … if they only needed someone to accompany them and did not need for you to participate, …I would only be an observer.

Marie adds that the staff should be able to adapt themselves according to the residents’ wishes:

Marie: If they want you to be with them up there [at the church], I would just accompany them, you don’t need to shout and sing if you don’t want, but [if] you are with them […], you should adapt yourself a bit, [depending on] who you go with.

It is interesting to see that both Siv and Marie hold to essentially the same normative standard of putting the service receiver at the center as Karin and Vera from Location 1 and Aisha from Location 2. At the same time, Siv and Marie add their own unique understanding that offers a more flexible position.

To return to the discussion about the informants’ professional self-understanding, I would like to draw on data from Einar Vetvik’s (2016) report, which I mentioned in Chapter 2. This survey-

102 based report investigated attitudes towards religion and spirituality among 134 respondents. Regarding their religious background, 69 (52%) were Christian, 1 was Muslim, and 1 was Jewish, while 45% declared that they had a “non-religious background” (Vetvik, 2016). In addition, in response to the question regarding how often the respondents practice religious activity, or an activity connected to their spirituality (livssynsaktivitet), 57% answered that they did not practice at all, 12% said that they did so “sometimes” (iblant), while 31% answered that they practiced often (Vetvik, 2016).

Against this background, it is interesting to note that, in response to the statement “religion gives me a strong motivation for my practice in social work,” 77% disagreed with the statement, while 11% agreed and 12% were neutral (Vetvik, 2016). At the same time, a similar statement replacing religion with spirituality (livssyn) yielded the opposite: 51% agreed, 35% disagreed and 12% were neutral (Vetvik, 2016). Respectively, 57% disagreed with the statement that their religious faith influenced their social work practice, while 61% agreed with the statement that their spirituality did so (Vetvik, 2016).

Moreover, the respondents tended to be uncertain regarding several additional issues. For instance, 40% were neutral towards the statement that the inclusion of religion and/or spirituality in social work practice is in conflict with its professional goals (29% agreed, 31% disagreed); similarly, regarding a statement about the inclusion of religion in the FO’s “Guidelines of Professional Ethics,” 39% responded neutrally (36% disagreed, 25% agreed).

Vetvik’s data show that, even among respondents who declared themselves as having a religious belonging, religion does not appear to be a strong motivator for professional practice (Vetvik, 2016). In other words, participants in Vetvik’s study seemed to have a certain tendency to detach their world-view from their practice. Indeed, Vetvik concludes that there is “an indication that Norwegian social workers have an ideal of neutrality which makes [them] not very willing to think that [their] own attitudes can have an influence on their client’s situation” (Vetvik, 2016, p. 62). Here, we can see some similarities with the data from my study, presented in this section. For instance, it is possible to see parallels between Vetvik’s data and the position of strict neutrality expressed by Karen and Vera. On the other hand, in contrast to the majority of Vetvik’s respondents, the focus group participants like Hilde, Christine and Yvonne clearly stated the possibility and usefulness of employing one’s own religious faith, competence, and background in one’s professional work.

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At the same time, it is important to note, as I have already done in Chapter 2, that the majority of Vetvik’s respondents did not work with disabled people, and it is unknown how many of those who did (7%) had provided services for people with ID.

8.3.2. Staff members’ views and ways of safeguarding users’ religious freedom To answer the question about informants’ perceptions of people with ID as religious subjects, we must consider their explicit views of users’ religious freedom and the ways this freedom is secured, which I will address in this section. First, I will look at how informants are aware of their users’ religious freedom and their right to religious practice by, for instance, highlighting how they address the difference between the creation of favorable conditions for the users’ religious practice, on the one hand, and the promotion of their practice, on the other. Then, I will shed light on some factors which could be limiting users’ religious freedom and autonomy (or at least are perceived by the informants as doing so).

The informants are explicit in their rejection of any kind of coercion in these, as in any other, matters. Trine is clear in her warning about the vulnerability of people with ID, as well in her emphasis on respecting their right to participate in religious activities:

Trine: [I] think it is very important that you try not to push your own belief in God […] but you [should] try [to do such] that they have opportunity to use […]

Aisha: … to find their own …

Trine: Yes, to find their own … or use the faith they already have. Because the most dangerous thing is… perhaps, the most dangerous [thing the staff should consider] for this group of people is that it is such a vulnerable and weak group, it is extremely easy to influence them and [it is very important] to be careful not to take from them their right to participate (brukermedvirkning), no matter what it should be […], and it is very easy to trample on [them], there’s not much that is needed [for it], so it’s very important that we don’t push our own faith on the individual user and show respect for an individual as a person and a human being.

Aisha: Yes.

At Location 4, the staff likewise emphasizes that, even though the users do not necessarily actively make decisions about their participation in religious services, the staff members are sure that their freedom of choice is being respected because they have the opportunity to decline the offer:

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Marte: They don’t ask themselves, […] we have followed these people who go to church who know [their wishes]… or [it’s that] we see [that a] resident enjoys going to church, because it happens a lot [there], they let us know if they don’t want … or they just don’t go, if they are tired they just go home, they go out, they just don’t continue being there.

Marie: Yes, it’s a short way home.

Marte: They know where the exit is.

At the same time, the participants not only emphasize the importance of securing negative self- determination of the users, i.e. allowing the users to make independent choices in religious matters, but likewise point to the necessity of positive self-determination, which implies creating conditions for the users to enact their religious rights (Banks, 2001). For instance, they stress the significance of professional assistance and support. Yvonne from Location 3, for example, discussing my question about what the freedom of religion might mean for their users, responds rather laconically: “That they are accompanied to the arrangements they want to take part in.” In the same vein, Trine, a leader at Location 2, as well as Aisha, underscores that the heart of their profession is to satisfy residents’ needs:

Trine: Well, not to practice religion is the easiest way [for the residents]. It is easy, but if you safeguard an individual’s needs to be able to practice her religion…

Aisha: We do it.

Karen, for her part, names dietary and gender-connected requirements among the issues that the staff should respect and facilitate: “Those things like food, daily care and mixture of genders (blanding av kjønn—she apparently means issues connected to the religiously motivated segregation of men and women, for example a female rather than a male staff member providing daily care to a female user), I think they are very important. […] It’s very important to facilitate this for them.”

Trine connects it to the primary professional task of social educators—namely, practical assistance and training (praktisk bistand og opplæring):

[I] think [that] some [residents] probably need help [to exercise religious practices][...][so] it is something we call practical assistance and training, and perhaps we have not practiced it enough for some individuals […], we have to facilitate it for them [but] we […] don’t go in and help them with that process with faith […].

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Here, by “helping with the process of faith,” Trine apparently means the active promotion of religiosity among residents, which she contrasts with creating favorable conditions for residents’ self-expression in the sphere of religion and spirituality:

We can […] facilitate in such a way that [the residents] would have a real possibility to flourish, develop themselves, and be more independent, and we can block off [these possibilities]…

Many other participants were also quick to note that facilitation and support should not turn to active promotion of any religious practice or faith. As Aisha phrases it, “we do not initiate their religion (vi setter dem ikke i gang med religion).” Or, according to Victoria, “[w]e can’t say, ‘don’t forget to say a prayer!’ That would not be right!”

At the same time, considering the level of facilitation for religious practices and ways to safeguard users’ religious needs, some informants seem to acknowledge that they might do not do enough.

For instance, Trine, home manager at Location 2, came up with rather frank suggestions, somewhat on behalf of all service providers, regarding things they should do more than they have been doing. For instance, she thought that the staff should pay more attention to individual residents and their religious needs: “[…] it is clear that we […] have not been good enough (flinke nok) with […] working by focusing on individuals.”

Here, Trine is speaking very much as a home manager, perhaps trying to emphasize the shortcomings of the staff members’ professional practice in front of me, an outsider and researcher. However, almost all informants from Location 1 shared their concerns that they could be better in addressing the religious and spiritual needs of their residents. Discussing, among other things, problems around communicating religious meanings in connection to their residents, they admitted that, although religious activities (e.g. liturgies) are organized for the residents, they never assess and discuss their spiritual needs:

Hilde: [I]f we are going to adjust [a Christian sermon, which could be too abstract for the residents] well enough, we should also have made a sort of mapping (kartlegging) of this field, actually, to know more about their biographical issues (historikken) […], because it is not an area we have focused on, but we are very good at charting abilities…

Christine: …right… […].

Victoria: …mapping [the residents’] childhood, in a way…

Ingrid: [You mean] that we are not mapping their spiritual needs?

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Hilde: Yes. In the same way we do it with [other] abilities. Because we can very well…

Victoria: Perhaps there is more emphasis that they should be independent in their daily life [than on spiritual needs] that we simply [prioritize] abilities for faith…

Christine: […] It is facilitated [for] liturgies, mission evenings and the like, but, at least in my section, we never talk about the spiritual needs, […] it’s the other parts of life [related to] the physical and [psycho?-] social that are the topics [of discussion].

In fact, what Christine, Hilde, and Ingrid are acknowledging is that while their location duly arranges church services and other religious activities, the spiritual needs of the residents may be being neglected. As Victoria suggests, it is possible that these are downgraded, compared to other needs, that may be seen as more practically important and more relevant for enabling users to be practically independent and fit for proper functioning in their daily lives. Or, as Christine points out, the focus of professional practice in their residential home is directed towards the physical, social and, possibly, psychosocial dimensions of their residents’ lives.

Here it would be interesting to draw a parallel with Ulland’s (2013) findings from her study of social educators’ views about the spiritual needs of people with ID, which I mentioned in Chapter 2. For instance, Ulland’s informants provide a mixed account of mapping and assessing their users’ spiritual needs, reporting both an inclusion of these into the users’ individual plans and a lack of systematic assessment (Ulland, 2013).

It is also tempting to compare Hilde’s, Christine’s, and Ingrid’s self-reported inattention to the spiritual needs of their users with the role that religion plays in their professions’ main guidelines and policy documents. I have discussed this issue more extensively in Chapter 6, for instance showing that the rules and principles of the Official Norwegian Report “På lik linje” do not explicitly mention religion, religious needs, or spiritual needs.

Why the spiritual dimension of the lives of people with ID at Location 1, if one believes Hilde, Christine, and Ingrid, seems to be marginalized compared to their other (physical and social) needs? I would suggest that this possible emphasis on the physical and social needs and the neglect of the more spiritual needs could be seen as a result of a widespread attitude towards the spiritual and religious dimensions of human life as a deeply private matter. A possible consequence of this could be that a staff member who is reluctant to speak about these issues in public may tend to overlook them as a serious matter for professional discussion. To put it a bit differently, the informants’ social role as practitioners of social education could prevent

107 them from including spiritual issues in their professional practice more than what is already included in routine religious activities.13

I would also argue that, although we certainly cannot make any inferences about any direct causal connection between the national curriculum for social education and the actual professional practice of the staff at Location 1, it is possible that this lack of attention to spiritual needs.14

In this context, it is interesting to look again for parallels in Vetvik’s (2016) findings. Here, the data about general attitudes towards the inclusion of religion and spirituality (livssyn) in social work show that 53% of respondents disagreed with the statement, “the mapping phase (kartleggingsfase) of a relationship with a client should include information about the client’s religious and spiritual belonging,” while 26% agreed and 21% were neutral (Vetvik, 2016, p. 60). It seems to be interesting data, especially in light of the 44% who agreed with the statement, “[Norway’s] Christian tradition and the new multicultural society makes it natural to bring up religion and/or spirituality in practical social work (praktisk sosialt arbeid),” while 27% were neutral and 29% disagreed (Vetvik, 2016, p. 60). Vetvik suggests that such high disagreement with the notion of mapping client’s religious and spiritual belonging could be explained by the possibility that the word “should” was understood by respondents as a universal norm, and that in reality respondents’ attitudes may vary depending on the client (Vetvik, 2016).

Moreover, it is interesting to note that such professional attitudes exist in an institution with a Christian and diaconal value profile. Indeed, one might expect that the diaconal institution would pay closer attention to the spiritual dimension of the lives of people with ID. It is possible to suggest that the location’s policy in this arena is restricted to offering a number of activities (without pressure to participate in them), with little consideration as to what the residents actually want. In other words, activities that might be considered religious have already been established at this location for quite some time (“to attend a service is a tradition that has existed since time immemorial (siden tidenes morgen),” as Christine phrased it) and are simply offered

13 Of course, against this interpretation of the informants’ self-reported negligence of a systematic assessment of users’ spiritual needs as a reflection of their own reluctance to discuss these issues in public, a counter-example might be given: Hilde’s own statement about staff members’ religiosity as a positive resource in the workplace, which I quoted earlier. However, this mismatch between Hilde’s own utterances could be easily understood as a mismatch between her assessment of actual professional practice (in which she suddenly remembered that they do not discuss spiritual needs) and her own thoughts that may have appeared only in the course of the interview and that she had never considered putting into practice. 14 Here, it is interesting to note that, in her aforementioned study, Ulland points out that she, as a practitioner, and her informants both recalled the absence of spirituality as a subject during their professional training, except in connection with geriatrics and terminal care (Ulland, 2013). 108 without deeper consideration of individual residents’ spiritual or religious needs. Moreover, this is reflected in Christine’s use of passive voice (“it is facilitated … but we never talk about spiritual needs”). Services and devotions, therefore, look like something that they, as staff members, must arrange while, at the same time, they do not take the initiative to assess what individual users actually need.

Here, it is interesting to draw parallels with some of the findings from the project “Comprehensive Services in Others’ Homes” (Omfattende tjenester i andres hjem), which was conducted by NTNU, NTNU Social Research, and Nord University between 2015 and 2018. This project examined shared accommodation as a form of care for people with ID in Norway from a variety of perspectives, including those of users, staff members, users’ relatives and family members, and municipal authorities (Tøssebro, 2019a; Tøssebro, 2019b). A comprehensive project, it included observations, individual interviews, focus groups, and dialogue conferences (Berg & Johansen 2019).

The findings of this project show, for instance, how many informants, who were members of the staff at residential homes, described their professional practice as very much governed by different routines, such as daily and weekly schedules, which are more focused on supporting users in solving practical tasks effectively, rather than on developing users’ skills (Johansen & Møen, 2019). An interesting finding, which resonates with my own findings, is that some of their informants experienced these rules and routines as something simply “being there”, something performed without enough reflection on them. In this case, I can ask a question that touches upon not only the issue I am considering here, but also the focus group at Location 1— though it is a question I cannot answer here. I have already mentioned that, contrary to my expectation that I would find the staff of a residential home with a diaconal profile to be more engaged in a conversation about religion, they appeared rather reserved and reticent. Thus, my question is, could this reserved appearance, while most likely a reflection of an attitude towards religious issues as a deeply private matter, also indicate insufficient consideration of the religious and spiritual issues as part of residents’ lives? To put it bluntly, could it be that they, duly accompanying their residents to masses and devotions, have not reflected very much around why are they doing it? If the answer to this question is affirmative, it echoes the experiences of the participants of the aforementioned project to an even greater degree. If my suspicions are correct, such attitudes could possibly inhibit the residents’ religious subjectivity.

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It is also worth noting that the participants who engaged in the brief dialogue I have just addressed, especially Hilde, looked to be somewhat perplexed about this issue, and expressed a bit of regret that they had missed such an important dimension in the lives of their residents.

With regards to the other locations, none of the informants were as frank about what was lacking in their own professional practice—except, perhaps, Trine, in her remark that they should pay more attention to the religious and spiritual needs of individual residents. Nevertheless, the staff at Location 4 acknowledge that it is very easy to forget these needs:

Siv: I don’t think that we are afraid of [exploring and mapping residents’ spiritual dimension], but I think it is often forgotten…

To be sure, informants said that they conducted background interviews with new residents’ family members, which include information about religious background. According to Siv, at Location 4:

We have those kind of introductory interviews (oppstartssamtaler) […] about where the users come from, a relief center (avlastning) or just from home… […] We get some information about what should be considered religious or what should not […].

It is not out of place to note, however, that the fact that the study participants do not openly acknowledge shortcomings in their professional practice regarding users’ spiritual needs does not imply that there are no such shortcomings. Indeed, to openly acknowledge one’s professional faults and imperfections during a focus group interview is not always easy. For instance, in the dialogue discussed above, it was an experienced social educator (Hilde), an experienced social worker (sosionom) (Christine), and a nurse (Ingrid) who raised this issue. At Location 2, it was Trine, the home manager, who spoke on behalf of the entire staff. Nevertheless, the fact that some of the participants raised this issue—as well as the fact that no one actually said that they do any kind of systematic assessment of users’ spiritual needs (besides some general background surveys)—could point to certain widespread attitudes among the professionals.

I will now turn to some other problems that staff encountered around the active facilitation of the religious freedom and religious subjectivity of their residents. More precisely, I will discuss issues that could be seen as a challenge to safeguarding users’ equal religious rights and their equal access and ability to exercise them. Since the users have intellectual (and, for many, also

110 physical) disabilities, the staff could perceive them as unable to enact their right to actively practice a specific religious or spiritual activity, and be tempted to let some external factors determine the conditions of the users’ religious practice. I will consider several such potentially problematic external factors, namely the influence of Christianity as the dominant religious tradition and the users’ background, upbringing, and family.

The influence of Christian traditions could be argued as being problematic in several ways. For example, as a dominant religious tradition in Norway, with the majority of the study participants being connected to it in some way, Christianity could tacitly influence professional practice in a way that may marginalize and lead to neglect of adherents of other faiths. . Here one can think of the Church of Norway which, even after its formal disestablishment in 2012, continues to enjoy a special position as a folk church (folkekirke), still counting the majority of Norwegians as its members.

In Section 8.1, I showed that the staff at all the study locations reported having a connection to the local congregation of the Church of Norway. I have also shown that the religious activities that are practiced in these locations are also rooted in common Norwegian traditions. Moreover, I have noted that those residents who practice other religious traditions do not receive assistance from the staff in this practice (apart from halal food being provided for Muslims). All of this may lead one to ask: are the religious needs of users who are not Protestant Christians properly secured?

The staff at Location 1 see no contradiction between their facility’s Christian orientation and their commitment to respecting the residents’ religious freedom. In Hilde’s view, for example, the first is a prerequisite for the last:

[W]e are a diaconal institution […]; it plainly means that when you work you must respect the values, to ensure that the users are able to come to the service independent of what faith they themselves have, it is, I think, basic for our job, and I think that if you are Christian or religious yourself you could get extra benefit from [our] service if you attend […,]: it would probably be of great value both for the users and the employees.

Christine, for her part, recalls that this aspect was emphasized during her job interview:

[I remember] that it was [said] very clearly in [my] job interview, that it is a diaconal institution and that we must facilitate users’ religious practice, be it a [Christian] service or a mosque or … that it is the users’ own…, it is a diaconal institution, but it is the users’ own religiosity we facilitate.

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For Hilde and Christine, the facilitation of any religious needs, not just Christian ones, is the central task of a diaconal institution and an inherent part of diaconal service. At the same time, others noted that, in their experience, they only provide the opportunity to attend Christian services. Some informants at Location 1, even had a slightly regretful tone when discussing this issue. Victoria, for example, explains that even though they had a few Muslim residents, they paid no attention to Id al-Fitr, which had just passed:

Victoria: Here we only facilitate for, in a way, the Christian faith; we had Id last weekend, but there was no focus on the fact that it was Id, or that it had been Ramadan, there had not been […] any focus on it here in the [institution], so, [even though] we arrange [Christian] services (lagt til rette for gudstjeneste), nothing was done to celebrate them [i.e. the Muslim holidays].

When I asked why this might be, Christine points towards the strong institutional and cultural connection of their workplace to Christianity and the Church of Norway, and to the very low number of Muslim residents:

Christine: I think that it is because [we are] a diaconal foundation, partly connected to the Church of Norway, therefore it is, like, this current (retningen), but I also think that there are not so many … there are some Muslims but not so many, the majority are from […] a Christian culture, Christian tradition.

Ingrid, likewise, thinks that the non-churchgoing residents are probably offered the opportunity to attend a service too often:

I wonder if it is proposed, perhaps […] often, [in fact], you get it straight in your face (folk får det i ansiktet nesten), “are you going to church?” to people who almost never go to church […]. It’s like something you have to ask for on your own, if you want to go to church.

Here, Hilde might be interpreted as feeling like the staff should be more conscious about residents’ wishes as well as their background with regards to organizing religious services, rather than assuming that everyone would automatically prefer to attend a Christian service.

Similarly, participants in the group at Location 2 indicate that the Church of Norway’s connection to their facility, and its availability and openness to people with ID, could explain the strong presence of the Church in the residents’ religious activities:

Trine: […] I think the difference [between the Church and mosques], now I have to admit I don’t know, you [Aisha] should tell me if I am wrong, because I am not a Muslim, but I think that […] in a Christian context it is never problematic to bring our resident group [to a religious service], I think it is not just as common for mosques?

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Aisha: No…

Trine: …To participate, I don’t know…

Aisha: No…I think, the Church [has] a closer relationship with this home than, for example, a mosque. But if there should be a need, […] it is possible to find an [Islamic] organization or a mosque that is open for all. Well, actually, mosques are also open for all, but this close relationship that the church has established (som kirken har tilbudt), I think, does not exist [when it comes to] a mosque or a synagogue […].

Thus, the informants’ experiences about the Church of Norway’s broad outreach and close connection to the study locations reflect its status as a folk church, open and accessible for all, as well as its declared commitment towards equality and the inclusion of people with ID.

However, while almost all religious activities at the study locations were described by the staff as being connected to Christian holidays (i.e. Christmas and Easter), as I showed in Chapter 8, some of the staff emphasize that non-Christian users are not excluded from these activities. Trine, for example, thinks that even if their Muslim residents do not attend the Christmas service with the others, they nevertheless still take part in the holiday atmosphere:

Trine: [I]t’s obvious that those [residents] who are Muslim do not necessarily attend the Christmas service, but they [get] all the other nice things that are going on at that time […]

Aisha: … dinners and the like…

Hilde at Location 1, for her part, seems to think that, while the staff should definitely respond to requests from residents and their relatives for assistance celebrating, for example, Islamic holidays, this would be best done by arranging a visit to a mosque instead of organizing something at the facility:

Hilde: I think it’s extremely important that [the residents and their relatives] should be heard, but… perhaps it would be easier to […] visit a mosque […]. [O]thers could lack understanding of the message [of Muslim religious practices]. I think the home (boligen) should arrange a visit to a mosque.

I will come back to the issue of the Church’s position in the society and its relationship with the locations as a potential obstacle to users’ religious freedom in Chapter 9.

The informants also explain the absence of the facilitation of worship outside the Christian tradition by referring to users’ backgrounds, upbringing and disabilities. They often note that the majority of users were raised within the traditions of Norwegian Lutheranism and thus have

113 little experience with other traditions; they point as well towards the users’ cognitive disability as a factor restricting their outlook:

Hilde: [I] just think that, considering those with moderate ID, the issue is very much about the little competence they have, [about] knowledge [they possess], right, from elementary school […] so it is more natural that the age group we have […] is perhaps more familiar with Christianity […], thus, they don’t have the basis to know very much about other types of religion, and I think that if we’re going to facilitate [other, non-Christian religious practices], it would be difficult to give them that religious choice (religionsvalget) [we are talking about].

Some informants from Location 4 are concerned about the same issues, and express this concern in almost the same way. For instance, Anine points to how difficult is for people with ID to actively choose between different religious activities, due to the fact that there is not much from which to choose:

It is, in a way, more difficult [for people with ID] than for many others to exercise their religious freedom, [because] they […] are very much dependent on that which has been offered by us or they grew up with parents who have not had equally great opportunities to explore religious…other religions and aspects of them. […] They get [knowledge about religions] at school and the like, I guess, just like us, but should they express a desire for this or that, we would participate in it (skulle gjerne ha vært med på det).

In other words, Hilde’s and Anine’s views accentuate the restrictions that are imposed on their users by the users’ own background, education, family, and not least by their own disability. What it seems Hilde is also trying to argue is that if they (the service providers) were to actively facilitate other religious practices than the ones they already do, the users would likely not be capable of choosing between the options.

While these factors might restrict the users’ ability to choose between different options, they do not necessary represent something detrimental to their religious freedom. Clearly, all people are restricted in their choices by their cultural and social situatedness and by the fact that our outlook is essentially limited. Moreover, it should be emphasized that religious subjectivity, as well as human subjectivity and agency in general, cannot be reduced simply to having a supply of opportunities from which to choose, nor to the ability to choose itself. Instead, what is arguably problematic here is not the narrowness of the outlook of people with ID, but how that outlook is assessed by the staff. While labels like “having little competence and knowledge” or “don’t have the basis to know very much about other types of religion” (mentioned above) are likely true, they might lead staff members to assume that users somehow automatically belong

114 to the Lutheran tradition, and, therefore, to somewhat ignore their right of self-determination in matters of religion. At the same time, it should be noted that I have absolutely no intention of attributing these attitudes them. We must assume that they handle the above-mentioned challenges as professionally as they can.

In addition to the users’ own background and (dis)abilities, an even more important influence on their religious practices is the users’ family, including relatives who are their legal guardians. Siv is clear about their importance, especially for the residents who cannot give consent.

Siv: I think a lot… regarding the religion that we practice here (religion som vi utøver her), much is based on what the residents have grown up with and what the family wish us to take them to […]. Those who go [to church] more [or less] constantly are those less-functioning (svakest fungerende), who, perhaps, are unable to say “yes” or “no,” [unable] to choose themselves. [In this case] perhaps it is the family… who has been going to church with them, and [their] family wishes for us to maintain this [tradition].

Anine also thinks that residents’ family members make key decisions about what religious practices the staff needs to facilitate:

[I] am just thinking how the [residents’] family members [with a religious background] would react, if we were to take [the residents] to a Buddhist meditation or… something like that, it would be very good [for them], with the music and the atmosphere and [it would be] spiritual for them, but if the relatives (pårørende) think that [it is not acceptable] that we should take [the residents] to other religious [practices and arrangements]…

In a similar vein, Trine and Aisha from Location 2 explain the fact that they do not drive their Muslim residents to a mosque or to any other Muslim activities by referring to the lack of initiative from the residents’ families. They claim that if they were to receive such a request, they would certainly do it:

Trine: It […] is just that the relatives (pårørende) have not [expressed] any wishes to take their family member to the mosque. It would not be a problem for us to do it, if they …

Aisha: No problem.

Trine: … would wish that. But they never have.

Aisha: Yes. Because, in a way, they have taken on this role themselves, so it would never be problematic [for us to do it, if the relatives would wish it so].

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But to what extent should relatives and family members be allowed to decide on behalf of the users? In this context, it is interesting to look at a discussion that occurred between Anine, Marte, and Siv, regarding how much the legal guardians and family members should be allowed to decide regarding the residents’ religious practices. Discussing the extent to which they, as staff members, know the background of their residents and how this knowledge contributes to their support of their users’ religious needs, Marte says they expect family members to let them know if they do not want their relative to participate in a religious activity. Anine, who is not a professional social or healthcare worker, wonders if they are allowed to make decisions for their disabled relatives:

Marte: What we do is to discuss… if [the residents] want to go to church, we expect [their] family let us know quickly that “my son or daughter is not to go there.”

Anine: But are they allowed to decide [for them]?

Marte: They [the family and relatives] can decide more than us.

Anine: If there is an activity program (aktivitetstilbud) that the users here can attend, [which includes] that on Sundays they can go to church, and they want to go, should the relatives be allowed to decide that they should not attend?

[…]

Siv: Actually, they can’t decide for them, but we, perhaps, often comply a bit with the relatives’ wishes. At least when it comes to users who perhaps are the least functioning (svakest fungerende) and who probably need someone to speak for them. But I think, if I have seen a user enjoying being at church, I would […] tell the family [about it] […].

The conclusion of this dialogue is that, in principle, the users’ autonomy should be considered paramount, but that, in practice, the staff often lets families, relatives, and guardians make decisions. Here, an important issue is raised, an issue that would perhaps be easier to address in political and legal terms, but which might nevertheless shadow staff members’ everyday practice: to what extent should service providers listen to the users’ own voices, instead of letting them be substituted by the voices of their family members and relatives? To what extent should the users be allowed to speak for themselves instead of giving this opportunity to another?

This represents, without doubt, a moral dilemma for the staff, who are both highly aware of the user’s right to self-determination and the family members’ interests as primary care providers. This kind of dilemma is not confined to issues of religious needs and practices, either: in fact,

116 conflicting points of view between employees of health and care facilities and the closest relatives of the service receivers are well-documented. In an early study, Barbro Sætersdal (1989) noted the different and conflicting perspectives of relatives and family members, on the one hand, and the staff members, on the other—even pointing towards “two cultures,” one marked by family bonds and the other by a more depersonalized professional culture (Sætersdal, 1989; Kittelsaa et al., 2019). The authors of the aforementioned study, “Comprehensive Services in Other’s Homes,” which included the perspectives and voices of the relatives and family members, also point towards similar conflicting views. For instance, they point out that parents of users of residential homes that had been studied often question staff members’ understanding of their offspring’s autonomy and right to self-determination, and suggest that the staff should actively motivate their children instead of simply letting them do what they please (Kittelsaa et al., 2019). The authors even suggest that the relatives may suspect the staff of misusing the right to self-determination as self-justification for not intervening (Kittelsaa et al., 2019).

Findings from my study, in contrast, provide another perspective: namely, that the staff members perceive users’ families and relatives as key decision-makers—if not in theory then in practice. For example, Siv suggests that this role is especially justified when a resident is functionally incapable of making decisions herself. With this, she touches upon another issue that poses serious ethical and political challenges. While it is legally sound that some users with profound intellectual disabilities who are unable to give consent should have officially appointed guardians to make decisions for them, it is not at all clear who should be counted as incapable of making decisions on their own. In other words, those who are tasked with classifying people with ID as unable to give consent are always at risk of depriving the latter of their subjectivity and agency.

This problem touches upon the theoretical discussions about disability that I have considered extensively in Chapter 4. Clearly, the very process of an institutional ascription of a person’s status as one unable to give consent is an integral part of the social construction of disability. In other words, it is institutional discourses and practices that categorize people as unable to consent, and that construct them as merely objects of care. At the same time, the relational approach provides us with an opportunity to assess this problem in a non-reductive way: to acknowledge that, at least potentially, some people with ID might indeed lack the capability to act without others as proxies. However, this approach—while emphasizing the multidimensional nature of disability as a phenomenon—is not necessarily helpful in giving us a

117 clear answer to a moral question: namely, when do we have the right to declare a person unable to give consent? Therefore, it is all-too-easy for both professionals and family members to neglect not only the spiritual needs of the users, but also their religious agency and subjectivity: for the former, by leaning too uncritically on medical diagnostics and, for the latter, by insisting too much on their role as family members.

8.3.3. Summary. In this section, I investigated how informants see themselves as professionals encountering the religious dimension of their users’ lives—and how they assess and address the users’ religious rights. The participants show a high level of awareness about their own professional role and position vis-à-vis the service receivers and their rights and needs, including those connected to religious practice. The staff at each of the study locations generally emphasize the paramount importance of respecting users’ autonomy and rights regarding religious issues, and they are clear that their main task is to facilitate the users’ religious practice, rather than to involve them in religious life. Reflecting on themselves as professionals, they accentuate neutrality as one of their key professional values, as well as the role of supporter and assistant—i.e. the one who is acting solely on the users’ behalf.

At the same time, the informants express different understandings of this role; while some draw a picture of a professional whose personal (religious) commitments is detached from her practice, others have more nuanced views. For instance, some indicate that a professional can use her personal religiosity and competence in her practice with significant benefit for the users. Some, in this context, stress that participating in a user’s religious practice could be beneficial to their own professional work.

The values and attitudes of the study participants appear in line with such central professional principles as respect for service receivers’ personal integrity, autonomy, and the right to participate in decision-making, which are enshrined in the CRPD (United Nations, 2006), Norwegian Official Report “På lik linje” (NOU 2016:17, 2016), and FO’s “Guidelines of Professional Ethics” (FO, 2015). At the same time, the participants admit both challenges and shortcomings when it comes to implementing these principles in practice and realizing users’ right to practice religion. Some, for instance, note the lack of professional discussion around users’ spiritual needs. At the same time, it could be argued that their safeguarding of users’ religious rights could at least be challenged by external factors. One such factor is the close

118 connection between the Church of Norway with each of the study locations; another is the Lutheran cultural background of the majority of the staff. Other factors include the users’ own background and intellectual abilities, which could lead to staff simply assuming that they are Lutheran by default. Finally, an even more important—and ethically complex—factor that can potentially restrict users’ religious subjectivity is the extent to which users’ family members should be able to make decisions about the religious practices of people with ID.

8.4. Staff members’ views of users’ religiosity.

In this chapter, I will address the core issue of this research by discussing the informants’ views and perceptions of their users’ religiosity. In the course of the chapter, I will look at what the participants of the research think about the connection between religiosity and intellectual disability, as well as explore how they perceive users’ religious practices in relation to the religion/culture dichotomy. I will also consider the question as to what the staff think these practices might mean to the users—if they think they mean anything at all. Then, I will examine how the informants interpret users’ religiosity and religious practices in such contexts as sociality and entertainment, on the one hand, and grief over the death of loved ones and the need for security, on the other.

8.4.1. Do users have religious needs? Do the informants think that their users have religious needs? Anine from Location 4 is clear on this issue:

M: Do you think that […] people with ID […] have religious needs? […]

Anine: Just like other people.

In contrast, Christine, Hilde, and Ingrid, challenged with this question, appear much less confident:

Christine: Both yes and no (bade og).

Hilde: Some [have religious needs].

M: Yes, some. But that means they are not completely absent?

Hilde: No.

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[…]

Christine: No, they are not.

Ingrid: Well, the fact that we offer religious activities makes them possible.

It is tempting to interpret their hesitation in light of the fact that these same informants acknowledged the absence of discussion about users’ spiritual needs in their own practice, which I discussed earlier in this chapter. In the dialogue between these women presented earlier, they were quite frank about this absence while noting, at the same time, that activities such as church services were duly organized. So, could their uncertainty be due to the fact that they simply had not reflected on these issues enough? This is quite possible, but I think that their response may also reflect the fact that the users’ intellectual (and language) disabilities represent a challenge in assessing their religiosity.

8.4.2. Religiosity and (intellectual) ability: religion and/or culture. A prominent issue raised in some of the focus groups concerns the relationship between users’ religiosity and their level of intellectual capability. For example, at the very beginning of the focus group interview at Location 2, Kai cautiously expresses his doubt regarding the importance of religion to residents with profound ID:

Kai: [R]egarding the users I work with, it is surely very dependent on where the users are cognitively, those who are seriously intellectually disabled (alvorlig psykisk utviklingshemmet), I would think … do not…well, think much about religion […].

However, he later adds, somewhat as a justification, that both he and the other staff members should talk more to those residents who are most “cognitively able” (kognitivt oppegående) about their “faith” and about that how they, as staff members, could assist them in this.

Aisha and Soraya express similar understandings of the connection between religiosity and functional level, or, as Aisha termed it, “cognitive age.” My question about what religion might mean for their residents was followed by a short conversation between Aisha, Soraya, and Kai:

M: What do you think religion means for your residents?

Aisha: I think it’s connected to cognitive level […], if you have a higher…

Soraya: Cognitive functioning.

Kai: Clearly, it is.

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Aisha: So it’ll be more religious, more about religion [sic]. If they are not equally functioning, it will be in a way more cultural.

Kai (with others): Yes.

Kai’s remarks and the dialogue between him, Aisha, and Soraya are striking in how easily they tie religiosity to the intellectual or “cognitive” capacity of the residents. Moreover, they raise an important aspect of this issue, namely the dichotomy between religion and culture. This dichotomy is also important in other respects, and I will come back to it several times in the course of this chapter. At the same time, it is clear how problematic this dichotomy is. Clearly, religion, at least seen from a social science standpoint, cannot be separated from culture. Even the aspects of religion that refer to beliefs and doctrine are inseparable from the cultural world. It is not a coincidence that beliefs, values, and meanings are included in the cultural dimension (Woodhead, 2011). From any social science point of view, this dichotomy is meaningless.

Another problem is that this dichotomy, by being implicitly contained in the interview guide, was introduced to the focus groups by myself. It could be argued that, by using this dichotomy myself and by presenting it to the informants, I influenced their own responses and, therefore, the data. In other words, it could be said that I pushed the informants into this analytically deeply problematic dichotomy, and then “found” this dichotomy in the data.

I would argue, however, that the use of this dichotomy is at least partly justifiable because, in a certain respect, it indeed reflects the informants’ attitudes. A contradistinction between religion and culture reflects the above-mentioned perception of religion primarily as a belief; in this case, practices that are not perceived as based on certain doctrines or world-views could be seen as belonging to the realm of custom or habit, i.e. what in everyday language could be called “mere” culture. In fact, some informants anticipated my use of this dichotomy, using notions of “culture” in opposition to “religion” similarly to how I used them. Moreover, it could be argued that if this dichotomy would have been problematic for the informants, it would have been reflected in the data. In other words, I included it in the interview guide because I assumed its relevance for the informants, and if it was completely irrelevant to them or even contrary to their beliefs, they would have responded to it in kind.

Looking at the remarks made by some informants at Location 2, it is not difficult to see a connection between the dichotomy of religion/culture and the users’ level of intellectual and language ability. This connection is most evident in the remarks made by Aisha. For instance, she seems to suggest that there is a certain scale—the more well-functioning and intellectually

121 capable a person is, the more her activities, conventionally considered as religious, are in fact religious. On the other hand, the more this person is intellectually disabled, the more “cultural” those activities are. In other words, the religion/culture dichotomy is correlated with another dichotomy, namely that of ability/disability. The more “able” the person is cognitively, the more “religious” she may be; likewise, the less “able” she is in this respect, the more “cultural” her activities are. Moreover, it could be argued that, in this binary opposition, “cultural” is subordinate to “religious” and the social and ritual dimensions of religion are subordinate to the experiential and doctrinal dimensions.

It is interesting to try to position these attitudes within their religious and cultural context. As I have mentioned previously, they could reflect a traditional Protestant emphasis on the intellectual, cognitive aspect of religiosity, to the detriment of practice and ritual. From this perspective, the Reformation’s focus on the salvific importance of correct belief presupposes knowledge and understanding of its content. In its emphasis on faith as a sole requirement for salvation, the Reformation has contributed to the severing of the practical, social, and ritual dimensions of Christianity from its theological and doctrinal dimensions, making them, at best, subordinate to the latter, as well as, in the case of pietism, to its experiential and expressive aspects. For instance, quite a few participants, when discussing religion during the focus group sessions, often speak of it in terms of belief (tro).

From this perspective, therefore, the practical side of religiosity is easily seen as “mere” culture, if it is presupposed as lacking any sort of clear belief behind it. Thus, it is easy to assume that the practices and activities of people who are perceived as lacking the latter are seen as “cultural, not religious.” Of course, one could ask how Aisha, a practicing Muslim with a minority background, came to express such views. However, even with this background, she, as a young Norwegian woman, likely grew up in the Nordic cultural milieu.

Discussing the religion/culture dichotomy together with some of the informants’ tendency to connect, or even correlate, religiosity with higher intellectual ability, it is important to note that, while perhaps common-sensical, these attitudes could be problematic and, potentially, even dangerous. The danger, here, could lie in the fact that these attitudes are not value-neutral. The problem with the attitudes expressed by Kai, Aisha, and Soraya is not only that views that reduce religiosity to a set of beliefs or separate “religion” from “culture” may be incorrect. A potentially problematic issue here is that these views have the power to attach negatively laden images to the users and contribute to constructing new or perpetuating the existent devalued

122 social roles. According to Wolfensberger, whose theoretical approach I discussed in Chapter 4, the important aspect of social roles are the expectations one has towards a person occupying a certain role, as well as perceptions of those expectations held by the latter (Wolfensberger, 2000). In other words, social roles are very much about how we perceive and what kind of behavior we expect from each other. As I have shown in Chapter 4, an important presumption of social role valorization theory is that negative and devalued perceptions and expectations towards people can ascribe them with negative and devalued social roles.

In accordance with SRV, the attitudes expressed by the informants could devalue users’ religiosity and religious needs by seeing them as something insignificant, less important, than the religiosity of people who can fully comprehend the content of the doctrine. Moreover, it could be argued, that in the worst case, these attitudes could lead to perception of some “more capable” people with ID as fully religious meaning-makers, while other being relegated to the roles of unspiritual, dumb ritualists, or even completely irreligious. It could be also argued that, as long as the latter are assumed as “not understanding too much about religion,” they could be seen as passive or child-like, thereby ascribing them corresponding devalued roles.

This is especially significant in the case of Aisha’s use of the expression “cognitive age” (kognitiv alder) during the conversation. While this terminology could be justified from a medical and diagnostical perspective, uncritical and under-reflected use of it could strengthen the stereotype of people with ID as “children” and thus contribute to the assignment of such devalued social roles as “eternal children,” incapable of any “serious” religious pursuit.

Interestingly enough, Trine, perhaps from the vantage point of her role as a home manager of Location 2, explicitly warns against the dangers of denigrating people’s religiosity based on their intellectual capacity:

Trine: […I] think that perhaps we often underestimate our users because they are on a lower cognitive level than us, and think that their faith and their understanding… are not so important in their lives, […] because [the residents] are intellectually disabled[;] it is very dangerous, very dangerous to, let us say, judge people from our position, to think that what we think is right, because it [can] very often be very mistaken. […] We must reset (nullstille) ourselves and […] take them seriously. I think we could be better on that.

Trine clearly acknowledges the existence, or even prevalence, of presuppositions that connect religiosity and religious beliefs with intellectual capability. By pointing to the danger of “underestimating” the users’ religiosity on the background of the staff’s own perception and

123 judgement—which, despite their professional competence, “[can] very often be very mistaken”—she is in line with my own argument. Although she also talks about religiosity in terms of “faith and understanding,” she nevertheless is clear about the danger of ascribing users devalued identities by treating their own religious needs as insignificant. In addition, she emphasizes the importance, for professionals, of critiquing their own presuppositions about people with ID and their religiosity. Interestingly, her remark about staff members’ assessment of users’ religiosity (that they “can very often be very mistaken”) can be read as an implicit criticism of a too-extensive medical and diagnostical perspective. In other words, she reminds her colleagues that no diagnostical assessment of people with ID can provide an exhaustive understanding of their subjectivity and inner life.

Another important issue raised by the informants in connection to religion, culture, and disability was that of language—or, more precisely, language ability and how it relates to the religiosity of people with ID. For instance, Christine from Location 1 suggests the possibility that those users who possess verbal language have the ability to articulate religious beliefs, while those without are “confined” to sheer ritual practices:

Christine: [P]erhaps functional level also [plays a role in determining the religiosity of people with ID], that some have, like, language and [can] speak about God and […] faith, while others, at least to my mind, are more into rituals, but maybe they have no language to describe what these rituals do…

The issue of the meaning of religious practices, and obstacles to its understanding, was addressed by many informants. Quite a number express uncertainty about what religion in general and religious practices in particular might mean for the users. Christine, for example, agrees that the ritual practices in which the residents engage apparently mean something to them, but is unsure what, precisely, that meaning is:

Christine: [I wonder] if it is the rituals they practice that have some deeper meaning or if it’s merely the tradition they are accustomed to… a sort of cultural… activity they are used to […].

M: So you think that for many users it is the ritual aspects that mean…

Christine: Yes, sure, but I don’t know what they mean to them, but I see that they wish to practice them.

M: …that they wish to practice them because [the rituals] mean something to them?

Christine: Yes, they mean something.

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Others are not only unsure what the religious practices might mean for the users, but express doubt that the latter have any understanding of these practices whatsoever. Victoria, a colleague of Christine, expresses this kind of sentiment several times during the focus group session:

[I] don’t know if they understand (hva de får med seg) what the pastor says […]. They lack language; we don’t know in a way if they think [about religious issues] at all, they have no communication tools to convey that.15

Ingrid is similarly perplexed: “[…] but what it means [for them] after all (betyr-betyr-betyr) is a mystery.”

8.4.3. Emphasizing the social dimension. Thus, users’ language disability and their lack of a means to communicate (or, at least, their impairment) results in a certain seclusion of their inner states of consciousness and the informants’ inability to judge anything about these states. This in turn leads many of the participants to focus on those aspects of religiosity that they can observe and control. Drawing on categories I borrow from Ninian Smart (1984), they pay attention primarily to the ritual and social dimensions of religion, rather than on the doctrinal, and, to a lesser degree, experiential dimensions. Sometimes, given the users’ impairments in language and/or cognition, the informants tend to stress the social dimension as the only dimension. For example, Vera from Location 3 is skeptical towards the idea that it is possible to know that there is something more in the religiosity of people with ID—that there are other dimensions of religion than just the social dimension that are accessible or relevant to them:

Vera: [W]hat church means for them, is another question. We do not know that. We cannot speak for them, but I believe that it is the church itself, the place itself and being there together (det sosiale samvær), no more than that. [my italics here and in the previous sentence – D.L]

In the course of the interview, Vera emphasizes several times that it is the sense of community, as well as the opportunity to socialize, and to meet friends and relatives, that is important to the users when they participate in activities she considers religious. Her colleague, Karen, points

15 It is interesting to note that, in her study of social educators’ views on the spiritual needs of people with ID, as mentioned in Chapter 2, Ulland also names reduced communication abilities as one of the factors that might inhibit the assessment and facilitation of the spiritual needs of people with ID. For instance, one of her participants thinks that the restricted abilities of some users to express themselves verbally could lead to their spiritual needs being easily overlooked (Ulland, 2013). 125 towards a similar sentiment when she describes activities like making a gingerbread house, wrapping Christmas presents and attending a Christmas market:

Vera: It’s just [about the] opportunity to be together (samhold), I think.

Karen: Focus on religion?... I don’t know.

Vera: I think it disappears (forsvinner). In the practical matters, [in] decorations, food, and presents […]. The spiritual… it disappears.

Thus, while some informants, like Christine and Victoria, remain agnostic about what meaning people with language disabilities ascribe to religious practices, Location 3’s Karen and Vera are more inclined to think that, if there is meaning, it can simply be reduced to a sense of community. Furthermore, looking at Vera’s and Karen’s remarks above, one might question whether they think that the activities they consider religious have any religious significance for the users. In fact, reading their remarks closely, it is evident that both of them mention religion together with the “spiritual,” almost equating these two terms, and contrast them with issues of the social. The latter, apparently, has nothing to do with religion, even if it takes place in a church; in fact, from this perspective, the users would have equally enjoyed going to a café or a football match.

It could be argued that, here, one can see the influence of an outlook that not only emphasizes belief, but also often reduces religiosity to its spiritual dimensions. At the same time, it is possible to argue that—similarly to what I have shown in the case of Aisha, Soraya, and Kai from Location 2—their remarks contain the danger of perceiving users’ participation in religious activities as lacking religious significance because of the users’ own intellectual disabilities. In other words, even if such activities as churchgoing and singing Christmas carols are conventionally assumed to be religious, they are not religious to the users because the users are incapable of understanding and of appreciating their spiritual side.

Reflecting on the meaning of religious activities, Karen and others at Location 3 suggest that, for the users, the most important aspects of religious activities are a positive and fun atmosphere, and even such things as good food—in other words, all that is encompassed by the Norwegian term “kos” (coziness, enjoyment):

Karen: What is nice, it is […] a party, […] [they] sing psalms, […] meet friends (kjente), some get the opportunity to perform in the church, it’s a sort of break from the daily routine, so I think that for many […] it’s not the message, God [that is important], but all this (alt dette rundt), and

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that there’s going to be party after, and that their parents will come […], I think it’s important, as a meeting place (samlingspunkt)…

Vera: And the atmosphere.

Karen: And the atmosphere. Many enjoy it, [even] those who are perhaps not Christian themselves, perhaps Muslims […]

In another remark on this topic, Vera, apparently referring to users without language impairments, reiterates this point of view:

Vera: I have a personal experience [with] some of the users, […] when you ask them, “what does Christmas or Easter mean [for you]?” they say first “church” and then, perhaps, “food”?

Karen: Yes, food. Tasty food…

In a similar vein, Ingrid, Mona, and Hilde from Location 1 suggest the significance of a social pastime as well as the enjoyment of food for users in this context:

Ingrid. [I] have an impression that quite a number of residents perceive all that about church as something positive, just because it means a community for them…

Mona. … and a cake…

Ingrid. And a cake.

Hilde. That’s a good point.

The participants at other locations likewise maintain the importance of these issues in their understanding of users’ religious lives. Location 2’s Trine, for instance, suggests that the emphasis on entertainment and having a good time could be a result of the influence of staff members and what they emphasize:

Trine: […] What in a way defines us as Christians, it’s the same as here, it’s a huge focus on all that with decorations, all that having a good time (dette med kos), all that atmosphere (stemning), food, […] presents, it occupies a lot of space indeed. And it […] reflects us a lot […], we have a huge ability to influence; what we emphasize, they also do.

Informants at Location 4 similarly emphasize that, for those residents who go to church, it may give them the opportunity to socialize, listen to music, and have a good time. They suggest that attending church services helps people with ID with social inclusion:

Anine: […] some users go to church on Sundays and the like, but …

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Marie: …it’s mostly the social, [like] music…

Anine: Yes.

Marie: Music and … all that is attached to it…

Anine: [It is] inclusive, [it provides] a place in the society (et plass i samfunnet), to be in the church […]

These reflections of the informants around the issues of sociality, social inclusion, entertainment, and kos lead again to discussions around the religious/culture dichotomy. Once again, I must note the problematic character of this dichotomy, and about the danger of influencing informants with the researcher’s own categories in such a way that the data fit these categories. At the same time, one can at least presuppose that, in the Protestant cultural context, people could categorize such things as hanging out with one’s friends at church or enjoying warm Christmas gløgg as firmly “cultural” rather than “religious.” Clearly, the study participants tend to see this matter in just that way.

At Location 3, for example, Lina, in agreement with her colleagues, suggests that the activities and practices we were discussing should be categorized as cultural, partly because she does not see the users as perceiving them as especially meaningful:

Lina: I feel that [the activities and practices that the informants would consider as connected to religion] are more connected to culture, in a way. [The users] do not emphasize the meaning…

Vera: Exactly.

Lina: We don’t preach to the users, right?

It should be noted that Lina’s definition of these practices as cultural, rather than religious, was not prompted by my suggestion to categorize them in these terms. Nevertheless, I picked up on her remark immediately and tried to lead my informants in that direction:

M: So you would call [these practices] more cultural than religious…

Vera: Yes.

Lina: Yes. Just like you have Halloween and you have … what is its name […], Valentine’s Day...

Vera: It is almost a routine.

Lina: Yes, yes.

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Vera: [It is like] “now the autumn is coming, okay, in autumn we have Halloween, now December is coming, so it’s Christmas,” they become regular events (faste rutiner), with St. Lucia Day, for example, when we bake lusekatter, […when] we go around with candles.

There are several important things to note in this dialogue that, I would argue, illustrate the religious/culture dichotomy. First, it is clear, to my mind, that Lina’s very brief remark about preaching illustrates particularly vividly the idea about belief in a certain set of doctrines as an essential and the most important trait of religion—an idea characteristic of Protestant tradition. Secondly, Vera and Lina reiterate this notion by pointing to the routinization of certain practices such as signaling that they are as far from being religious as possible. The parallel that Vera draws between Halloween (a highly commercialized phenomenon only popular in Norway in recent years) with Christmas (a holiday central to Nordic Protestantism) illustrates this point. It is possible to understand her remark as reflecting the fact that, for them, both Halloween, Christmas, and St. Lucy’s day are completely devoid of religious meaning, or possibly of any meaning, other than a joyful break from repetitive everyday activities.

The informants at Location 1 thought in the same vein. When asked about which activities arranged for the residents could be connected with a religious tradition, and in what sense they could be characterized as religious or cultural, Christine and Mona named the Christmas and Easter workshops. Mona considered them “not especially religious.” Others tended to agree:

Victoria: [They are] cultural.

Mona: …but culture…

Christine: Then we have a devotional lunch … You can attend …

Ingrid: And you sit there, it’s in fact difficult to go out! Perhaps some don’t participate in the devotional lunch because they hear about God there, I don’t know… Can it be so?

Hilde: Perhaps… I think, there are many who don’t have a […] choice, who just find it nice (koselig) to be there independent of whether you believe or not… Because it can be a nice setting anyway.

Victoria suggested that the Christmas and Easter church services have more religious significance than the things they do in the workshops before these holidays:

Victoria: I think […] the napkins and candles with angels on them, it’s in a way cultural, or…

Mona: Yes, yes. …not very religious…

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Victoria: It is what we have done at school, that we have grown up with, [that] you do before Christmas, making God knows what, […], it’s cultural, I think, it’s a nice (hyggelig) activity, it is also Christmas and Easter services, which are more of a religious character than those workshops where you make things, although [the residents] think that they are also nice.

In the previous chapter, I noted that many informants at Location 2 mentioned that, for them, the religious significance of such practices as celebrating Christmas, singing carols at Advent, and attending church depended on whether or not they were believers. Soraya, at the same time, suggests that this also applies to the residents (those who are high-functioning, intellectually) and noted that their family background also plays a role:

[…] With regards to the residents, those who are cognitively [high-]functioning, including those who know that it’s Christmas, so they are celebrating [a] religious event, they are usually taken by their parents and guardians, and they go to church and the like. Around Christmas. They see it not as a [cultural event], but as […] a religious celebration.16

Discussing the social dimension of users’ religiosity, as well as issues around the religion/culture dichotomy, I should also mention users’ family background and upbringing as factors that, according to some informants, play a role in defining their religiosity. For Hilde, for example, the primarily cultural character of practices one might define as religious is at least partly due to residents’ childhood and adolescence:

For some, at least for those users I work with, it’s mostly about the cultural […] upbringing, [for example if] the family does not attend church often, but still they attend, like, confirmations, weddings, and such things […].

Thus, in my analysis of the data from all of the focus groups, I can see a clear tendency to think within the framework of the religion/culture dichotomy. Many informants tend to see culture or the social as what the religiosity of people with ID is actually about. As I have shown, some clearly see the link between users’ abilities and the religious (as opposed to “just” the cultural or social) character of the practices in which they are engaging. However, not all of the informants who tend to see users’ practices as “more cultural than religious” imply that this is due to their intellectual disabilities. For them, deemphasizing the religious significance of these practices does not necessarily devalue the practices. For some, like Victoria, these practices are part of their shared tradition (“it is what we have done at school, what we have grown up with”);

16 It is important to note that, partly due to Soraya’s accent, and partly to the difficulties that occurred during the transcription of this focus group interview, some of her utterances are difficult to interpret. I apologize if any misinterpretation has taken place. 130

Victoria’s remark could even be read as considering users as being a part of her own social and cultural world. The fact that these practices are not considered religious does not make them less important.

In other words, informants do not necessarily categorize their users as less capable or attach devalued social roles to them because they see the practices in which the users engage as non- religious.

It is true that the informants’ attitudes towards certain practices as being religious or not could well be understood in the context of Nordic Protestantism or, perhaps, Western Christianity; both traditions tend to stress the cognitive aspects of religiosity over the practical ones. However, their reflections about the religious and/or cultural significance of a wide array of activities practiced at their workplace—even such, to use Linda Woodhead’s term, “quotidian practices” (Woodhead 2011, p.133) as sharing meals or drinking tea—shed light upon important dimensions of religious life.

Take, for instance, the notion of “kos” as having religious significance, which appeared in several informants’ remarks. As Hilde pointed out, the residents “found it nice (koselig) to be there [at the devotional lunch], independent of whether they believe or not.” As I have noted in Chapter 4 (Section 4.3), newer research in contemporary religion pays greater attention to this sphere of “lived religion” or “religion of everyday life.” As I have also mentioned, among the merits of this approach is its focus on the practical, material, mundane aspects of religion, as well as its de-emphasis on belief (Henriksen, 2016). From this perspective, even if such activities as a devotional lunch are perceived by the staff as not religious because the users who participate in them are not necessarily believers, the latter can still assign them religious significance. Furthermore, from this point of view, the correlation between level of religiosity and level of intellectual ability appears problematic. Even if practitioners with ID do not have the same capacity to comprehend the doctrinal elements of certain rituals or do not have the same religious experiences as their non- intellectually disabled companions, their religiosity is not less-interesting or less-important.

Clearly, the practices and activities that the staff arrange for the users—which many of the informants find “more cultural than religious” and which many of them grew up with themselves—could be seen as part of what some researchers and lay people call “folk church religiosity” (folkekirkelighet). Previously, I have discussed the notion of the folk church (folkekirke) as both a constitutional designation and self-identification of the Church of

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Norway. Some studies, however, apply this term to a form of religious life that is widespread in Norway. Such religiosity, while connected to traditional church rituals, does not necessarily manifest itself through a profession of faith or committed membership in a congregation.

A good illustration of this type of religiosity can be found in Aagedal (2010), who characterizes the practice of candle-lighting on graves in Norway as a folk church practice. While such features of religiosity as a belief in (a personal) God, churchgoing, and prayer have in recent years declined, there is evidence showing an increasing practice of candle-lighting on graves (Aagedal, 2010). Indeed, Aagedal found that the majority of those who practice this ritual are members of the Church of Norway, define themselves as “medium-religious,” “doubt, but believe” in God, and go to church sporadically (several times a year, but less often than once in a month) (Aagedal, 2010). In other words, candle-lighting does not necessarily correspond to strong Christian beliefs and consequent orthopraxy. According to Aagedal, they “do not depend on the Church of Norway’s definition of the correct faith and practice, but nevertheless use the church’s symbols and [its] material structure” (Aagedal, 2010, p.178). Clearly, within such types of religious life and practice, dichotomies like religion/culture appear irrelevant.

8.4.4. Religious significance of loss, grief and feeling of security. Practical, ritual, and social issues were not the only ones considered by my study participants when they reflected upon the religiosity of people with ID. Existential issues were also mentioned, specifically with regards to the death of loved ones. The staff who had worked at a location for a long period of time have occasionally had to address users’ reactions to the loss of neighbors who have passed away. Informants at Location 2, especially Trine, discussed this issue at length. Trine points out that both the staff and residents feel like they are one family, and this makes losses especially painful:

I think that I have seen… we have had residents that have died, and it is something special, because if some of them have lived here for many, many years, [for] both […] staff and the residents, [it all becomes just like] your family […], such is the life of those who live here and a part of our life [as well], it is very tough when …when you lose someone from your family.

For instance, she recalls an event when she was talking with a resident about a resident who had died four years earlier, and the resident cried because her grief was still strong:

[…] a person passed away four years ago, [and] yesterday I talked to a resident about that person, and he started weeping […]

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She emphasizes that people with ID are especially vulnerable to such losses:

[…] people disappear, [and] there is grief and loss (savn), and there is “where has this person gone?” and it is not easy for a resident, regarding [his or her] cognitive level, to understand, but it is [still][…] a huge shock for them to lose someone, so I [think] that the faith, … the faith is important for [some] […], and there are some residents who want […] to talk to a priest, to talk about where [the deceased] person is now, it is a difficult question for all of is, isn’t it?

There are a number of interesting moments in Trine’s remarks. First, she emphasizes the importance of grief in the lives of people with ID. She recognizes this issue as being of paramount importance for all people, staff members and users alike. Moreover, I read Trine’s remarks as an acceptance of the residents’ capability not only to grieve loved ones who have passed away, but also even to address existential questions. At the same time, to Trine, questions connected to the death and loss of loved ones are especially challenging for the residents because of their intellectual disability, the “cognitive level” they occupy. To put it simply, they do not always manage to understand the significance of death. Trine suggests that it is important for them to figure out where the deceased person has gone. Although one might question whether Trine, by referring to their intellectual disabilities, is somehow belittling them, and presenting them as asking apparently “childish” questions, I would argue that, from the point of view of a relational model (which I discussed in Chapter 4), she is correct—to acknowledge the intrinsic factors of disability is not the same as devaluing a person in her own and others’ eyes.

For Trine, religiosity (“faith”) could be important both to answer these questions and to give death and life meaning. As with any existential questions, they are also questions about one’s world-view, about our place in the world, and the meaning of life: and, for Trine, these questions have religious significance.

In fact, a little later in the discussion, Trine reflects on how some residents can answer questions about why a person is suddenly absent and where she has gone, as well as questions about their religiosity in general. She suggests that, for some, at least for those who are most disabled, religiosity gives some sense of safety:

I also think that [we have residents who are] on the cognitive level of, perhaps, a three-year-old, and others are on a different level, but I think… I think that for some it means that there is some sort of safety (trygghet), that it feels as if it’s something safe […] I have tried to talk to residents who are, perhaps, at the stage of a seven- or eight- or nine-year-old, and asked, for example, “where do you think that person who died is now?”, right, and [for that resident] this person is

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with God. I don’t know exactly what is meant by it, but it’s in any case… a safe place to be […], what does it mean [for them], I have no idea, but it is something that they think is good, I mean God is something safe […].

She also suggests that older users might have a closer connection to religiosity within the Christian tradition than the younger generation, and that their background might, in a way, guide them in their religious lives:

And I think also that some residents, at least among the older generation, have many more […] conversations with the pastor […] than many among the younger residents, they have in a way had more religion from the Bible, in a simplified form, so they have a relationship [with religion] and an understanding [of it], that is to say, to a certain extent, what God is, […] what He means in our lives and so on, they have a much more personal relationship, so it’s all a bit individual […], some experience it as something safe, that’s clear to me.

Again, I find it important to address several elements in Trine’s remarks. First, what strikes me is her explicit use of the notion of mental age, and her general inclination to discuss users’ disabilities in medical-diagnostical terms. To be sure, it is quite possible that this kind of emphasis on this sort of language has its problems; nevertheless, I would abstain from any judgement about this because of my lack of competence in this area. What is interesting, however, is that Trine’s remarks imply that she views the users’ mental age, as well as their background and upbringing, as factors that determine their religiosity. For instance, users who have been influenced by Christian religiosity through their upbringing have resources to help them construct a “more advanced” concept of God than those who lacked such influence: these latter might therefore struggle to make sense of their own religious experience (note the explicitly theistic language with which Trine, a self-proclaimed Christian, frames discourse about religion). In other words, people with ID who have higher cognitive capacities as well as certain backgrounds are more capable of developing a more advanced form of (theistic) religiosity.

What is also conspicuous, here, is that Trine’s thoughts about intellectual disability and religiosity seem to be somewhat similar to those of her colleagues: Aisha, Soraya, and Kai. They, too, tend to refer to the users’ mental age and cognitive functioning when discussing their religiosity. In fact, Aisha also uses the term “kognitiv alder.” However, it seems that Trine is much more nuanced and discreet than the other three informants. Clearly, her background as an experienced professional and as a manager of the residential accommodation plays a role here. Moreover, she does not claim that there is a clear correspondence between level of intellectual

134 capability and level of religiosity, nor does she explicitly correlate these with the religion/culture dichotomy. Compared to the positions of some of the informants at the other locations—for example, Vera and Karen from Location 3—Trine seems to be more attentive towards the users’ spiritual needs. At the same time, both Trine’s and her colleagues’ remarks could be read as understanding religion primarily in theistic terms, as a belief in God.

The issue of safety as something people with ID may find in religion was also raised by informants in other locations. For Anine, and others at Location 4, religion could be a source of solace and security, while membership in a religious society could provide feelings of belonging and inclusion:

Anine: [People with ID could have religious needs] just like everyone else. [Many] could find security (trygghet) [in religion] and feel that they are not alone and … and those who are on such a level that they, in a way, understand better that things can be a bit scary […], a religious society could be both inclusive for people that are there [and] also in regards to that there is God or… something in a way bigger than us…

Marie: [One] who looks after [you]…

Anine: [One] who looks after [you].

Anine suggests that this feeling could be experienced independent of any theistic references:

This is something we can’t define… this dimension […]. They just experience the energy that is in the church as very positive […], a positive energy that gives security independent of God or what God is.

This remark of Anine is interesting in that she is acknowledging users’ spirituality and religiosity outside a belief in God—unlike, for instance, Trine, who, while also talking about feelings of security, seems to connect it with the idea and awareness of God. Anine seems to connect the experience of a flow of positive energy within the church space and liturgy, points that could be connected to her emphasis on religious practice as a source of feelings of inclusion and belonging. She could be understood as hinting that practices that could be perceived as lacking any spiritual significance for people with ID may, in fact, have it. In other words, attending a liturgy would not necessarily be equal to going to a café, but could very well have some deeper significance for people with ID.

In contrast, some of the staff at Location 3 try to avoid discussions about religion with their users, because they fear that it may lead to insecurity and distress:

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Marie: It could be too difficult, in a way, at least in that user category, which… needs the concrete [things] … predictability.

Many others: Yes, yes.

Lina: …too indefinite (for svevende).

Marie: Yes, too indefinite. We have a number of examples of that in our ward, that we don’t talk about these topics, because it would be too difficult to manage.

Vera: Too philosophic

Lina: It’s not tangible.

Vera: It’s not material, not concrete […].

Lina: It’s not secure. It’s too unsecure, to put it plainly.

While I am not aiming to criticize such measures, nor deny that avoiding “philosophical,” abstract matters is important for maintaining users’ peace of mind, I would suggest that it is noteworthy how these remarks by Marie, Lina, and Vera are reminiscent of Karen’s and Vera’s suggestions that, for users, “there is no more than” sociality and material concreteness in practices that could be described as religious—that “the spiritual … disappears” in sheer routines. Looking at the remarks made by these five members of the staff at Location 3, it could be argued that, for them, the users’ outlook and perception of reality is confined to either concrete (i.e. not abstract) concepts or concrete, material things and predictable processes. For instance, what does Marie mean when she says that they “don’t talk about these topics because they would have been difficult to manage”? Does she mean that these issues are really disturbing for the users, or that the staff avoids them just to make things easier for themselves? Or, to put it differently, do the staff themselves construct the users as persons unable to deal with “abstract,” “philosophical” issues, or do they reflect the latter’s real impairments?

8.4.5. Perceptions and reality. The questions that I posed at the end of the previous section could be extended a bit further. Regarding the staff’s perception of users as religious people and the extent to which these perceptions may assign devalued social roles one might ask if they—even if problematic and potentially negative—might still correspond to reality in some way. In other words, even if some participants view some of their users’ religious activities as “merely” cultural or social, and even if such views could contribute to stereotyping such users as “dumb,” unspiritual, or

136 unable to undertake real meaning-making, could it be that such views are at least partially true? Would they not be, in that case, less problematic?

In Section 4.2, discussing different theoretical approaches to disability, I pointed to the relational approach as most fruitful. To reiterate this, I have argued that the merit of this approach lies in its criticism of medical, social-materialist, and post-structuralism-inspired cultural views as too narrow, and in its proposal of a more holistic model of disability. The relational perspective gives us an opportunity to consider disability as a social construction, while recognizing that it can also have a biological and/or psychological basis.

Considering staff’s perceptions of users’ religiosity in light of the relational approach, it is clear that perceptions and images can reinforce devalued social roles and thus users’ disability. At the same time, their disability is conditioned by the impairments they doubtlessly have.

In a similar vein, Wolfensberger (2000) asserts that, while all social roles are socially ascribed, some of them are “competence-contingent,” i.e. in order to be performed, they require certain preconditions from their holders. For example, almost all professional roles require specific competences, while roles such as being a parent or sibling require few or none (Wolfensberger, 2000). Wolfensberger (2000) suggests that there is a complex feedback loop between competences, perception of competences, roles, and perceptions of roles, and the expectancies, opportunities, and means provided to a person. The competences, skills, and abilities a person possesses influence the images of that person and are influenced by the perceptions and images held about that person by others: both contribute to assigning and reinforcing either valued or devalued social roles. Moreover, even if a person is ascribed with competencies she does not really have, she can still benefit from the positive image with which she has been ascribed, acquire positive and valued roles, and enhance her well-being and social status (Wolfensberger, 2000). Conversely, images of a person’s disabilities, even when they may have some basis in her real impairments, could contribute to ascribing her with a potentially devalued role.

As I have argued in this chapter, among the range of perceptions of users’ religiosity held by the staff, some may be interpreted as potentially reinforcing certain problematic stereotypes of the users. At the same time, it is possible to argue that, even if these perceptions do reflect some users’ impairments in their religious life, they may nevertheless help maintain representations of the users that could negatively affect their ability to live religious lives or even devalue them as religious subjects. Even if we, for the sake of argument, assume that some users, especially those with profound intellectual disabilities, actually lack the ability to comprehend doctrinal

137 dimensions of the Christian tradition, or that their religiosity is sometimes really “nothing more than” a set of practices that benefit them socially, still the corresponding perceptions can have negative consequences to the users by reinforcing negative and devaluing stereotypes.

Regarding the extent to which there is a real possibility that these perceptions might assign users with devalued or negative social roles and hinder them in their religious subjectivity and religious citizenship, I discuss this more thoroughly in Section 9.4.

8.4.6. Summary. In this section, I tried to explore how the focus group participants perceive their users’ religiosity. Though some of them acknowledge that people with ID have religious needs and can be religious, many are still puzzled as to what these needs are, and what users’ religious life is. A number of informants find it difficult to define the users’ religiosity because of the latter’s intellectual and language disabilities. Some of them suggest that there may be a connection, or even correlation, between users’ religiosity and their cognitive abilities or even “mental age.” In the focus groups, this was often framed in the religion/culture dichotomy: certain activities are religious when the users who participate in them are (fully) aware of their meaning or, more importantly, of the doctrine or belief system that the activities are rooted in. Otherwise, such activities are “mere culture.”

Some informants emphasize that the practices and activities they could connect to the sphere of religion are most likely viewed by the users simply as an opportunity to socialize and have a good time. They point to their entertaining value as cozy pastimes (kos), and wonder whether there is any other, deeper significance for the users beyond that.

At the same time, other participants suggest that such existential issues as the death of a loved one might have importance for the religiosity of people with ID. In these circumstances, some informants interpret the attitudes of people with ID in theistic terms, implying that they probably believe in God’s care of the deceased. Others point towards the solace and security that religiosity, religious practices, and religious life can provide people with ID.

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9. Discussion.

In this chapter, I explore the material from a broader perspective, summarize my analysis, and try to generate some deeper reflections, perhaps from different angles than those used previously. In the previous chapter, I tried to show the diversity of informants’ opinions and views. There is, however, a need to look at these in a more generalizable way without also compromising their diversity.

I began this project by formulating research questions for this study. These are outlined in Chapter 1. The most central question of this study of course centers around how the service providers perceive and understand the religiosity and religious practices of people with ID. To aid in answering this question, I formulated three more-specific questions: 1) What significance does religion have for service providers’ professional practice? 2) How are users’ religious freedom and their right to religious practice secured and taken care of by the staff? 3) Are people with ID in general and the users at the study locations in particular perceived by the staff as religious subjects?

In this chapter, I will examine the material explored in this thesis in light of these three questions. Before that, however, I will revisit the notion of citizenship, consider how it could be applied to the issue of religion, and argue for the relevance of the notion of religious citizenship in discussing the findings of this study.

9.1. Religious citizenship as a relevant framework for interpretation.

In Section 4.3, I discussed the problem of the ascription of rights to people with ID as well as questioning in what way they could be recognized as active citizens. I will now consider how the idea of citizenship, in all its multi-dimensionality, could be applied to religion and religious practice.

In Section 4.3, I provided a basic understanding of citizenship as belonging to a social and/or political community. At the same time, this understanding highlight only one dimension of citizenship: namely, citizenship as status. It neglects the other dimension: citizenship as an activity—the practices and actions to which members of the community have rights or those

139 with which they are expected to engage. Moreover, as I have pointed out earlier, the understanding of civic community as being exclusively identical to nation-states, though it has many merits, has been challenged in different ways (Isin & Turner, 2007). It is therefore better to speak about citizenship as being differential and multi-layered (Nyhagen, 2015; Hudson, 2003).

The notion of religious citizenship is similarly complex and contested (Nyhagen, 2015). The Australian political scientist Wayne Hudson, for example, provides five ways to define it: firstly, in terms of a nation-state, which constitutionally guarantees its citizens’ rights of worship and religious practice; secondly, in terms of civil society, according to which religious citizenship is exercised on this societal level; thirdly, in terms of the rights of persons; fourthly, in terms of legal documents that enshrine those rights (including international human rights conventions); and finally, in terms of reflexivity, i.e. that people identify themselves in terms of religion and adopt specific religious discursive practices (Hudson, 2003). The obvious merit of Hudson’s approach is that he tries to synthesize all these approaches, seeing religious citizenship as multi-dimensional as well as socially, culturally, and legally contextual (Hudson, 2003).

Alternatively, the religious citizenship of people with ID could be considered either in terms of membership in a political community (in cosmopolitan or national terms) with corresponding religious freedoms and rights, or in terms of membership and participation in religious societies and organizations. In the first case, one is interested in how the rights of people with ID to practice religion are respected by e.g. the Norwegian state institutions or society in general. In the second, one might ask how religious societies and organizations include people with ID and provide them with opportunities to participate (Lid & Solevåg, 2020, p. 9). In the context of this study’s research questions, it is clear that the first alternative is more relevant to my interests. Indeed, since I am interested in the perspective of service providers—whose professional and societal mandate includes ensuring users’ basic rights and equal participation in social life—it would be justifiable not to consider how churches and other religious societies empower people with ID within their folds.

It is important to emphasize the importance of religious citizenship’s active dimension: people with ID are in danger of been marginalized as active religious citizens, i.e. those who have the right to participate in religious life on equal terms with others (see Section 4.3). Moreover, in terms of this research, the notion of recognition appears to be crucial: to be able to exercise

140 their religious rights fully, people with ID must be recognized by professionals as co-citizens with equal rights.

Hence, I would argue that, in the context of religious citizenship, the use of Wolfensberger’s social role valorization theory, which I presented in Section 4.2, appears both salient and fruitful. Indeed, if people with ID are to be enabled to exercise their active citizenship fully, they need to have access to positive social roles. Citizenship and participation in the life of one’s social and political community requires suitable social roles, into which people can step in and out of. In social role theory, a significant part of one’s social role represents the expectations of others (Wolfensberger, 2000). In other words, whether others perceive someone as fitting or not fitting a certain role plays an important part in her actual enactment of this role. Assuming active citizenship to be a valued, positive social role for people with ID, it would be easy to see how they could be unable to occupy that role, if the staff, their families and relatives, or even society in general fail to perceive them as such. In fact, in his list of major role domains, Wolfensberger (2000) mentions “community/civic identity and participation,” and among examples of positive roles attached to this domain—which he points out have been held by people with ID—he cites the roles of citizen, voter, taxpayer, and community activist. As I have already mentioned, he also provides examples of positive religious roles available for people with ID.

In other words, Wolfensberger’s social role valorization theory could provide an opportunity to address the question of how staff perceive people with ID as religious subjects, both from a more relational and a more normative angle, showing that service providers’ perceptions really matter for users—to either empower the latter in their role of active religious citizens or, in contrast, to marginalize their position utterly.

Bearing all that in mind, I would argue that the notion of religious citizenship is a useful tool to examine how service users’ religious subjectivity is perceived by study participants. The idea of citizenship opens up for a relational and communal understanding of subjectivity: people, as social beings, most often depend on others to recognize of their status as agents, of their rights and even of their moral worth. In Section 4.3, I argued that human rights are relational by their very nature, that for one to enacts one’s rights, even to be entitled to them, requires the presence of others—of a community. This idea is highly relevant to people with ID, whose voices very often go unheard and whose presence as actors and co-citizens is often neglected.

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9.2. Religion in professional practice: an overlooked issue?

I would argue that this study’s findings point towards a rather complex picture of the role religion plays in the informants’ professional practice. While I did not intend to examine the informants’ personal religiosity or beliefs, I still noted that many, if not most—with the notable exception of those at the Location 2—were quite reluctant to speak about their own relationship to religion and their own religious persuasions. At the same time, findings show that some are open to using their own religious persuasions and values in their professional practice.

However, this study shows that religion as an issue of professional relevance, as well as the religious needs and practices of the users, often appears under-discussed and under- acknowledged. As Siv from Location 4 said, “we have no relation to religion.” While she was likely referring to herself, or possibly also her colleagues, her remark could be read as an illustration of the attitudes towards religion in the context of professional practice prevailing in most of the study locations.17

At the same time, the staff had actively involved users in activities that could be considered folk church practices. Singing Christmas carols during Advent, baking gingerbread cookies and constructing gingerbread houses, walking in St. Lucy candlelight processions—all these activities could be seen as rituals that structure people’s lives. The data from this study indicate that the first reaction of many informants, when they start to discuss which religious activities they organize, is to point towards these practices, simply through their association with Christian traditions. Just as Lina from Location 3, responding my question about how they celebrate religious holidays in their day center, immediately exclaimed, “We decorate for Christmas!” However, upon reflection, many of the informants also claimed that these practices are, in fact, “more cultural than religious.” This view could be explained as a reflection of an attitude discussed thoroughly in Chapter 8 (Section 8.1), that connects, or even reduces, religiosity to belief. As Karen from Location 3 nicely phrases it, in a remark I included in Chapter 8.1, “it is something in the society (ligger i samfunnet), that people go to church,

17 Location 2 could seem to be an exception, but, in fact, it is not. Actually, at the beginning of the interview, Peter made a short remark in which he hinted that “this [topic] has not been especially discussed here.” He was uncertain, but it is possible that he was right. To be sure, through their active contribution and reflection on the issue of religion, it might seem as though Trine, Aisha, and Soraya regularly discuss these issues. However, the fact that they appeared interested in and concerned about these issues during the interview does not necessarily imply that this is the case in their daily work. 142 celebrate [St.] Lucia day, [attend] Christmas concerts.” It is a religiosity of everyday life, which is not always considered by those who practice it as being religiosity at all.

It could be argued that, in some of the interviews, a certain tension was present. The aforementioned practices (e.g. Christmas carols or even church services) could be duly followed as activities prescribed by the day’s schedule, while the religious needs of those who attend these arrangements tend to fall under the radar. A notable example of this is, to my mind, Location 1. The staff of a residential accommodation with a Christian and diaconal profile, with their own chaplain and regular religious services and devotions, have “suddenly” discovered that they have not paid much attention—or at least have not made any systematic assessment— of their users’ religious and spiritual needs. Could it be that the staff is so accustomed to enacting a certain set of practices, such as Christmas carols or even church services, that they consider them simply as a part of their daily routine?

In other words, while issues connected with one’s faith, world view, and spiritual needs seem to be considered insecure and disturbing, or are outright forgotten, popular practices that could be broadly associated with “folk church religiosity” are performed. Practices such as Advent carol-singing and others traditionally associated with Christmas and Easter contribute to a calm and pleasant atmosphere, and are part of longstanding traditions that those at the study locations have followed “since time immemorial” (Christine, Location 1). They are seen as positive, because they provide users with the opportunity to socialize and have a good time, and they are a part of “kos.” Issues of belief and spirituality, on the other hand, are perhaps seen as too dangerous to touch.18

This makes sense in the context of the broader picture of Norwegians’ relationship with religion, which I have discussed in Section 5.1. Indeed, the existing research and statistical data points towards a gradual decline of personal faith-based religiosity, together with the persistent popularity of such practices as lighting candles on graves (Aagedal, 2010). The dichotomy of “religion vs. culture” might also make sense in this perspective. Equating religion with belief, the participants regard it as a matter of highly personal significance—something uncomfortable

18 A possible illustration of my point could be a remark made by the staff at Location 3, which I quoted in Section 8.4.5. They stated that they avoided discussions about what they called “philosophical” matters with their users because these issues could be very unsettling for them. I have suggested that perhaps they avoided these discussions because these issues also unsettled the staff members. If my suggestion is correct, then this statement by Lina, Marie, and Vera represents a good example of the avoidance of dangerous and “unsafe” issues of faith and spirituality, preferring instead the secure and “tangible” “cultural” practices and traditions of Norwegian Christianity. 143 to engage with while a range of activities, from carol-singing to occasional visits to a church, are considered merely “cultural” and therefore not dangerous.

Among the possible explanations for the marginalization of questions of faith and spirituality at some of the study locations, one might propose that at least some informants simply lack training that would enable them to engage with the religious dimension of their users’ lives. In Chapter 6, I have pointed out that the National Curriculum of 2005 does not explicitly mention competence in and knowledge of religion and spirituality as part of the required training of social educators. At the same time, the emphasis is placed on a comprehensive and holistic approach towards human life, which most certainly implies making students aware of the users’ spiritual needs. In addition, the curriculum accentuates competence in cultural values and human rights, and respect for users’ self-determination (Utdannings- og forskningsdepartementet, 2005). While it is possible that the staff’s purported gaps in formal education somehow reflect the curriculum’s lack of specific religious studies, to suggest that the latter caused the former would be to go too far.

The tendency to overlook, or even neglect, religion as an issue relevant for professional care— which, I would argue, is apparent in varying degrees among at least some informants in several locations—could have negative consequences for users’ ability to fulfill their role as active citizens. Neglecting and overlooking religion as a significant issue of service provision could lead to insufficient facilitation of the religious practice of some users, risking the enactment of their human rights. I will now discuss these issues more thoroughly.

9.3. Users’ religious rights and freedoms: acknowledged and implemented?

Issues concerning the human rights of people with ID were not discussed during the interviews, to any significant degree. However, the importance of norms and values around respecting users’ personal autonomy and freedoms, including religious freedom, were explicitly acknowledged by most of the interviewees. For instance, when discussing their views on themselves as professionals encountering users’ religious practice, all of them saw respect for users’ self-determination as a core value, and assisting users in their daily lives as a core professional task. They asserted professional neutrality and non-interference in their users’ religious lives.

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None of this is particularly surprising. Indeed, the social educator’s codes of ethics and conduct clearly state the centrality of respect for human rights, dignity, and self-determination, as well as the empowerment of users (IFSW, 2018; FO 2015). At the same time, the data show that there are some factors that could potentially have a negative effect on users’ exercising of their religious rights and impede their active religious citizenship. In the previous section, I have discussed signs of the relative marginalization of religion as an issue of professional relevance, which—at least at some locations—could represent a potential impediment for a holistically oriented professional practice. I have also noted that a possible reason for this could be insufficient competence in religious matters for some service providers. Clearly, the latter could be characterized as an important impeding factor on its own, hindering both the professional practice of social education and the rights and the active religious citizenship of the users.

In addition, in this research I have shown the certain influence of Norwegian Lutheranism on the daily life of the locations, both in the close connection of most of the locations with the Church of Norway, and in their traditions and practices, some of which could be considered a form of “folk church religiosity.” At first glance, at least, one might ask whether this influence might lead to the rights and needs of users of other denominations or religions being overlooked. For example, only the Church of Norway cooperates with the locations in a systematic way, either through their own chaplain and church services (in the case of Location 1), or in the form of a collaboration between a residential home or day center and the local congregation or a visiting pastor (in the case of the other locations). As I have shown in Chapter 8 (Section 8.1), such arrangements reflect the still-dominant position of the Church in many sectors of society, including many public institutions. Could this dominance represent an obstacle to users’ religious freedom?

As I have mentioned in Section 5.1, the notion and status of the Church of Norway as a folk church, which entered the Norwegian Constitution in its 2012 amendments, is ambiguous and could be considered problematic, especially in light of the idea of equal and inclusive citizenship. However, neither this study’s data, nor the officially declared policies of the Church, give me reason to suspect that the institutional attachment between the locations and the Church are exclusionary towards users of other faiths and world views. For instance, as I have pointed out in Section 6.2, in its work on the inclusion of people with ID, the Church has involved other religious organizations (Kirkerådet et al., 2009). In the (2009) statement “Equality, Inclusion, Facilitation,” the Church Council unequivocally committed itself to respecting the freedom of religion of people with ID and their right to religious practice

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(Kirkerådet, 2009). Moreover, in the joint statement “Participation and Affiliation: The Inclusion of People with Intellectual Disabilities into Faith and Spiritual Communities” (Deltakelse og tilhørighet. Inkludering av mennesker med utviklingshemning i tros- og livssynssamfunn), which I mentioned earlier, the Church, together with other religious and life- stance organizations, emphasized the importance of seeing them as religious subjects and not passive recipients of care: “Adults with intellectual disabilities should be treated in the same way as other adults. […] We are all fellow human beings (medmennesker). Nobody is an “object of charity” for whom we have to do something (Kirkerådet et al., 2009, pp. 10, 11).”

Now, it is obvious that the existence of official policy declarations does not necessary mean that the policy was actually implemented. However, the data from my study do not provide evidence for or against an assertion that the Church’s local congregations’ close connection to the locations have had a negative impact on users’ religious freedom and opportunities for active religious practice outside the Church.

Regarding the religious rights of the users, someone might argue that the central legal and policy documents that should govern professional practice—namely the CRPD and the Official Norwegian Report “På lik linje”—fail to address the issue of religion, and therefore might represent a potential impediment for the realization of users’ religious rights. I have discussed this omission in Section 6.1. While the Convention does not explicitly acknowledge religious issues, it still places a strong emphasis on the equality of all human beings, irrespective of their abilities, and their “full and effective participation and inclusion in the society” (United Nations, 2006, 3c). In addition, the Convention builds upon previous international human rights covenants and conventions (United Nation, 2006, Preamble b; d). Therefore, as a normative document, it makes a strong case not only for the general citizenship of people with ID, but also for their religious citizenship.

The Official Norwegian Report “På lik linje,” as I pointed out in Section 6.1, does not mention religion either. This omission might arguably be seen as more serious than that of the Convention, because the Report outlines the set of concrete policy measures for the implementation of the Convention. As I have mentioned, the Report has been criticized by the Church of Norway for this lack of concern for the religious rights and needs of people with ID.

Obviously, it would be too far-fetched to assume that the omission of religious rights and freedoms in both the Convention and the Report could have directly caused the religious needs, rights, and freedoms of some users to be overlooked. I suggest that, far more important in this

146 respect, is whether service providers perceive users as capable of being religious and, if so, in what way. Therefore, I will now summarize and discuss the study findings that shed light on this question.

9.4. People with ID as religious people, religious subjects, and religious citizens.

Do the participants in this study recognize the users, as well as people with ID in general, as religious subjects? This question has implications beyond the sphere of the service providers’ ideas and perceptions. Indeed, staff’s attitudes and views of people with ID regarding their agency in religious matters can affect the users’ ability to live their religious lives in an active way. Neglect or insufficient awareness of users’ capacity for religiosity or even certain negative stereotypes about people with ID regarding their religiosity can hinder their religious practice and thus have broad social and political repercussions. Hence, I suggest that the issue of whether and to what extent people with ID are perceived as religious subjects could be examined through the lens of the notion of citizenship.

To address these issues, I will revisit the data that show the ways in which the informants perceive users’ religiosity. Study findings show that the informants generally acknowledge that it is possible for the users to be religious. I did not meet with any outright denial of the capacity of people with ID to be religious. However, as I have shown in the previous chapters, a number of participants are uncertain regarding the extent to which and in what way the users could be considered religious, or what religiosity could mean to them. For instance, some informants express doubts about their ability to grasp the significance of religion for some of their users because of the latter’s disabilities, e.g. the absence of verbal language.

The participants expressed a wide variety of views of their users’ religiosity, and it is difficult to find points of agreement. One the one hand, many of them expressed views on religion as a source of meaning in the face of such issues as death and grief, or as a source of positive emotional energy and strength in everyday life. On the other hand, a few participants emphasized the social dimension of users’ religiosity, purporting that mingling with people at church or enjoying the singing of Christmas carols constitute the primary or perhaps even the only expressions of their religiosity.

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One of most interesting features of some informants’ perceptions of the users’ religiosity is that they connect it, and even conflate it, with the latter’s intellectual capacity. In other words, the users’ capacity to be religious is correlated with their level of cognitive development. Connected to this perception is a view that could be characterized as a dichotomy between religion and culture—the higher cognitive capacity the person has, the more religious significance she is considered to be able to imbue the practices in which she participates.

I suggested that while, on the one hand, this could appear rather intuitive, on the other, it could be understood in the context of the Protestant religious tradition, with its focus on belief as a central tenet of religiosity, and its marginalization of the ritual and practical dimensions of religion.

The answer to the question regarding whether and the extent to which the participants perceive the users as religious subjects—and the degree to which their perceptions could promote or compromise users’ active religious citizenship—is far from straightforward. I would argue that the data are too diverse and ambiguous concerning that issue for a clear-cut answer.

On the one hand, no informant openly expressed views about people with ID that explicitly denied their religious subjectivity. Indeed, some of them, as I have shown, unequivocally endorsed the assessment of users as equally capable of being religious people, coming up with examples of users as churchgoers and active participants in the life of a congregation. Indeed, there are voices (notably that of Trine from Location 2) that clearly emphasized the importance of taking them seriously as religious persons and subjects, and called for a critical reassessment of the staff’s attitudes.

At the same time, I have pointed out that the tendency among some of the informants to correlate, or even conflate, religiosity with higher levels of cognitive functioning, can potentially reinforce valued social roles of some people with ID as active believers and ascribe others with devalued roles as passive ritualists or habitual worshippers. I have argued that these kind of perception could be connected to the participants’ own view of religion. It seems that, for many, the notion of religion is first and foremost associated with belief, cognitive awareness, and agreement a set of propositions.

In other words, the idea of religion as something that requires (higher) intellectual capacity could, in certain circumstances, lead to viewing some people with ID as capable of being religious and others as not, thus perpetuating the latter’s devalued social roles as “simple,” “eternal children.” Similarly, doubting that some people with ID are capable of having

148 meaningful religious or spiritual experiences beyond the social, the ritual, and the practical may lead to holding images of them as one-dimensional, primitive, and boring. In certain settings at least, these images could jeopardize the position of people with ID as active religious citizens, assigning them the role of passive recipients of care or, at best, of individuals who are included in a religious community but denied any opportunity to participate in it—in other words, the role of passive, rather than active, citizens.

For example, if a priest, pastor, or church staff member promoted views that people with ID cannot have a meaningful relationship with God, it would be considered blatantly exclusionary, at least from a Christian point of view. Simultaneously, if church leaders state that people with ID are indeed beloved children of God, but then, on the basis of their disabilities, relegate them to the pews and deny them any opportunity to contribute to the life of the religious community on their own terms, one could say that the users’ active citizenship would be compromised.

However, the extent to which these perceptions may hinder the users as active religious citizens is less clear-cut than one might initially think. Obviously, the nature of this research does not allow me to make any direct conclusions about the participants’ professional practice. Still, considering the data as a whole, as well as the context in which some of the potentially more problematic utterances were stated, I would argue that they do not give an unambiguous answer.

For instance, the fact that many participants frame the relationship between their users and the religious sphere primarily, if not exclusively, in social terms, and that some of them questioned whether there is something “more than that” regarding users’ religiosity, does not unequivocally indicate that the users are not seen as religious citizens. As I have shown extensively in Section 8.4.3, the importance of religion as a means to address users’ social needs is acknowledged by most of the participants, at almost all the locations. Similarly, they often tend to emphasize inclusion in social life as an important factor motivating users’ religious practices. Consider, for example, Vera and Karen at Location 3, who frequently emphasized that what counts for the users when they e.g. go to church is the sense of community (samhold), and the opportunity to socialize. In other words, they view it in positive terms, and their assessment could be interpreted as seeing the social inclusion of the users as important. To give an example from another focus group, Anine and Marie from Location 4 (discussing the reasons some of the users attend church on Sundays) proposed that church gives the users “a place in society” (et plass i samfunn). This, to my mind, is a strong statement with regards to considering religion as a force enabling people with ID to enact citizenship.

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However, this emphasis on religion as a means to achieve social inclusion or meet one’s social needs is often framed in terms of entertainment, a pleasant pastime, and an enjoyable atmosphere. For instance, Vera and Karin, talking about the users’ perceptions of Christmas or Easter, suggest that the first things that come to mind for the users are “church” and “food”; Ingrid, Mona, and Hilde from Location 1 connect their users’ perceptions of the religious with community and “cake” (see Section 8.4.3). The notion of kos, invoked by many informants, is clearly a part of this discourse. From the perspective of users’ active citizenship, these terms are rather ambiguous and could be interpreted differently. On the one hand, there is no evidence that the participants devalued them or gave them any negative connotations. Similarly, considering certain activities to be primarily about kos, entertainment, or having a good time does not necessary mean denying the users’ subjectivity and agency in performing them. However, in implying that the religiosity of people with ID is merely about entertainment and having a good time, it is easy to view it as unimportant and unserious, relegating it to the periphery of the users’ life. In addition, kos can be seen as passive and undemanding, especially regarding activities for people with profound intellectual disabilities.

Sometimes kos is considered in connection with activities that the participants tend to describe in terms of routine, habit, and custom. For instance, Vera and Lina from Location 3 sometimes spoke about some practices (in this case, related to Christmas) as “almost a routine” (rutine) for both themselves and the users. Similarly, others spoke about religiosity in terms of traditions and activities practiced at the locations “since time immemorial.” I have argued that many such practices can be considered a part of “folk church religiosity” (folkekirkelighet), and are increasingly being paid more attention by scholars of religion. From this perspective, there is nothing insignificant or unimportant in them. However, it may appear differently from the perspective of the staff, many of whom may have been influenced by a specifically Protestant understanding of religion, which emphasizes belief. As I have pointed out, they may diminish the significance of these practices, and, potentially, even those who engage in them. In addition, they may view them as something habitual and repetitive, or just nice but not especially serious. I suggest that, in the latter case, it is possible to interpret the data in a way that depicts the users as passively involved in these activities.

Another issue that may be of interest in the context of this discussion is the problem of communication. As I have shown, some participants appear perplexed about what religious practices mean to users, referring often to the fact that many of the latter lack verbal language. Some of them sometimes even seem to doubt that the users with profound intellectual and

150 language disabilities imbue religious practices with any significance at all, referring to their lack of “tools for communication.” It would be thought-provoking to consider these kind of attitudes in light of the notion of narrative citizenship used by Fjetland and Gjermestad (2018). According to the authors, the active citizenship and subjectivity of people with profound ID are enacted in dialogical communicative relationship between them and those close to them, especially service providers (Fjetland & Gjermestad, 2018). An interpretative activity is therefore the central precondition for active citizenship. Drawing on the works of the French philosopher Paul Ricoeur, Fjetland and Gjermestad (2018), as I have pointed out in Section 4.4, propose an understanding of citizenship as a narrative co-authorship, when people participate in the social life as active citizens and co-creators of meaning. From this perspective, the role of a service provider is to interpret users’ meaningful utterances and, through this activity, enable the latter’s active citizenship. In many cases, her role is to use her intuitive understanding of users’ utterances and render them in the form of language (Fjetland & Gjermestad, 2018). Therefore, a central skill of a service provider appears to be narrative competence (Fjetland & Gjermestad, 2018). Thus, understanding of citizenship as narrative co-authorship presuppose profound openness to the user, recognition of her human dignity and moral worth, and, arguably, should be considered as an inherent component of the professional ethics (Fjetland & Gjermestad, 2018).

While the data do not provide enough basis for such a proposal, it is possible to suggest that the interpretation of the intentions behind the users’ utterances within a religious context, which could give the staff the opportunity to assist them in the enactment of their religious citizenship, represents a challenge for the participants. For instance, in the dialogue between Marie, Lina, Vera, and others from Location 1 (presented in Section 8.4.4), Marie mentions that they do not discuss topics that seem too abstract and “philosophical” because of their alleged “difficulty” for the users. Others, as I have pointed out, experience communication challenges concerning the matters of spirituality and religion.

Nevertheless, most, if not all, participants, demonstrate a high level of awareness of their roles as professionals, as well as acknowledge the users’ religious needs. They are unequivocally committed to the principles of professional ethics, accentuating respect of the users’ rights, dignity, and self-determination. Some clearly emphasize importance of taking users religious’ subjectivity seriously. Therefore, there is no doubt that they own both professional and ethical competence required to interpret their users’ utterances and assist them in enacting their narrative citizenship. At the same time, I would suggest that, since religion sometimes seems

151 to be an issue which is easily overlooked, it may be advantageous for the participants to enhance their narrative competence in religious matters by engaging in a broader and deeper professional discussion of religiosity of people with ID.

10. Conclusion.

In this research, I have attempted to investigate how service providers for people with intellectual disabilities, employed by residential accommodations and day centers, perceive the religiosity and religious practices of service receivers. It was a complicated process that required me to enter into unknown terrain, recruit informants outside my own network, and deal with authorities who were often unwilling to be involved in this kind of project. Nevertheless, the attempt had been successful, and the outcome of this process is presented in this dissertation.

As such, let me summarize the results of this study by addressing the main research question: how do service providers perceive the religiosity of people with ID? Most of the participants seem to acknowledge that their users can have religious needs. At the same time, behind this simple recognition, there is, understandably, significant diversity of views on this issue. Many participants in this study pointed towards such issues as the deaths of loved ones, longing for support and security, social inclusion, and cultural traditions as having possible significance for people with ID.

One of the central issues of interest of this research is how the staff perceives the users as religious subjects. It implies, among other things, to what extent their religious freedoms and rights are respected and enacted, and on what level they viewed as capable of being active religious practitioners, rather than merely objects of care. In other words, to what extent are people with ID viewed as active religious citizens.

To meet this objective, I have used several theoretical approaches. For instance, to address the issue of religious citizenship I have invoked aspects of citizenship theory, arguing for its suitability to address issues of human rights of people with ID in a relational, communal, and inclusive way. The advantage of the concept of citizenship consists also in that it accentuates recognition of people with ID as bearers of religious rights and active enactors of these rights together with all other citizens.

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In addition, I have employed Wolfensbergers’ social role valorization theory as a useful tool to address the staff’s perceptions of the users as religious subjects. The merit of this approach was that it allowed me to consider the participants’ views of the users’ religiosity in terms of social roles and to see to what extend the roles attached to the users could promote or impede their religious subjectivity.

This study shows that most of its participants accept the importance of respecting users' right to religious practice and their professional task to assist them in their enactment. Besides, the staff members clearly emphasize the importance of professional neutrality and are cautious not to impose any kind of religious outlook on their users or promote any beliefs.

At the same time, I tried to show that parts of the staff’s attitudes and views represent potential pitfalls for their professional practice of assisting users in the enactment of their religious rights. For instance, religious issues in general and religiosity of people with ID seems to be relatively overlooked and marginalized. Even the simple unwillingness of many managers to provide me with the care facility employees' contact information demonstrates that the topic of this study was not considered necessary. Likewise, remarks made by some of the informants indicate the same.

Moreover, there is a tendency among some of the service providers to conflate religiosity with higher cognitive abilities and, therefore, to consider practices traditionally associated with Protestant Christianity as purely "cultural." Others sometimes doubt that the practices commonly are seen as connected to religion mean anything more to the users than the opportunity to socialize and have a good time. I argued that this kind of attitude could be seen as being based on a Christian, mainly Protestant, focusing on belief as the essence of religion. As such, they do not necessarily represent an obstacle to the inclusion of the users into faith communities or creating conditions that would enable them to practice religion. However, by ignoring the diversity of ways one can be religious, such attitudes could potentially reinforce negative stereotypes of people with ID as lacking capacity for spirituality and move them into devalued social roles. While the participants in this research project arguably show commitment to assist their users in religious practices and include them into religious life, the data is more ambiguous to the extent to which they see people with ID as active religious citizens.

I hope that this research will help raise awareness among service providers of the religious dimension of the lives of people with ID and their religious rights and freedoms. I also hope

153 that it will contribute to the empowerment of them as active citizens, including in the realm of religion.

11.Possibilities for future research.

Since this study was, in a certain respect, a pioneering study, there are a significant number of possibilities for further research within this topic. Here, I suggest only a few of them. To begin with, it could be interesting to expand the field of inquiry, studying the staff at locations in other parts of the country, for example, in Northern Norway. Taking into account regional and local differences in respect to culture and traditional forms of Protestant religiosity, such research could yield interesting and unexpected findings. For instance, service providers of Sami origin could contribute with perspectives both exciting and valuable. Furthermore, I recommend a focus on service providers specifically with an immigrant background (some of whom were part of this study). Another interesting possibility would be to focus on the management of the facilities for people with ID. Here, emphasis could be placed on their roles as leaders in the context of the implementation of users’ right to practice religion.

With regards to methodology, I might suggest first of all that a similar study using individual in-depth interviews would be useful. In fact, as I pointed out in Chapter 7, the weakness of the group-interview approach to the topic of this research is that some of the issues that were raised may have been considered sensitive and thus uncomfortable to discuss with colleagues. Therefore, individual in-depth interviews would be a useful approach to the kinds of issues taken up by this study, both as a supplement to group interviews or as a stand-alone method. In addition, a more psychologically oriented study of service providers’ attitudes towards the religiosity among people with ID could be performed with the help of a variety of quantitative and mixed-method approaches.

In the Chapter 6 of this dissertation, I have discussed Church of Norway’s officially adopted policy towards people with ID and facilitation of their religious needs, based on a number of Church’s documents. At the same time, Church’s, as well as other religious organizations’ actual policies in this sphere had been left out of the scope of this thesis. However, they could be an interesting and fruitful field of the future research.

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Last but not least, I would also suggest the possibility, or even necessity, of further development of the topic of staff’s attitudes towards people with ID as part of a co-citizenship approach— for instance, paying closer attention to the notion of religious citizenship. While I discuss religious citizenship on these pages, as well as using it as an analytical tool in some respect, some interesting and thought-provoking issues are left behind consideration, partly due to insufficient data. For instance, it could be a stimulating and fruitful to investigate how the notion of active citizenship as narrative co-authorship, proposed by Fjetland and Gjermestad (Fjetland & Gjermestad, 2018) could be applicable to the sphere of religion. Moreover, the issue of how different forms of religious citizenship of people with ID on different societal levels (for instance, as membership in a political community or in a religious society) is considered and enacted by the staff, could be an inspiring topic of future research.

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Appendices.

Appendix 1. Response regarding notification about processing personal data—NSD Data Protection Services (in Norwegian).

Appendix 2. Request for participation in a research project (in Norwegian).

Appendix 3. Interview guide—topics for focus groups (in Norwegian).

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Appendix 1. Response regarding notification about processing of personal data—NSD Data Protection Services.

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Dmitry Lukash VID Misjonshøgskolen Vid vitenskapelige høgskole Postboks 184 Vinderen 0319 OSLO

Vår dato: 17.01.2017 Vår ref: 51333 / 3 / HJP Deres dato: Deres ref:

TILBAKEMELDING PÅ MELDING OM BEHANDLING AV PERSONOPPLYSNINGER

Vi viser til melding om behandling av personopplysninger, mottatt 29.11.2016. Meldingen gjelder prosjektet:

51333 Perceptions of religiosity of people with developmental disabilities Behandlingsansvarlig VID vitenskapelig høgskole, ved institusjonens øverste leder Daglig ansvarlig Dmitry Lukash Personvernombudet har vurdert prosjektet, og finner at behandlingen av personopplysninger vil være regulert av § 7-27 i personopplysningsforskriften. Personvernombudet tilrår at prosjektet gjennomføres.

Personvernombudets tilråding forutsetter at prosjektet gjennomføres i tråd med opplysningene gitt i meldeskjemaet, korrespondanse med ombudet, ombudets kommentarer samt personopplysningsloven og helseregisterloven med forskrifter. Behandlingen av personopplysninger kan settes i gang.

Det gjøres oppmerksom på at det skal gis ny melding dersom behandlingen endres i forhold til de opplysninger som ligger til grunn for personvernombudets vurdering. Endringsmeldinger gis via et eget skjema, http://www.nsd.uib.no/personvern/meldeplikt/skjema.html. Det skal også gis melding etter tre år dersom prosjektet fortsatt pågår. Meldinger skal skje skriftlig til ombudet.

Personvernombudet har lagt ut opplysninger om prosjektet i en offentlig database, http://pvo.nsd.no/prosjekt.

Personvernombudet vil ved prosjektets avslutning, 31.08.2019, rette en henvendelse angående status for behandlingen av personopplysninger.

Vennlig hilsen

Kjersti Haugstvedt Hanne Johansen-Pekovic

Kontaktperson: Hanne Johansen-Pekovic tlf: 55 58 31 18 Vedlegg: Prosjektvurdering

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Personvernombudet for forskning

Prosjektvurdering - Kommentar

Prosjektnr: 51333

SAMARBEIDSPROSJEKT

Prosjektet er en nasjonal samarbeidsstudie med HiOA, Fakultet for helsefag v/Inger Marie Lid, førsteamanuensis. VID vitenskapelig høgskole er behandlingsansvarlig institusjon. Personvernombudet forutsetter at ansvaret for behandlingen av personopplysninger er avklart mellom institusjonene. Vi anbefaler at det inngås en avtale som omfatter ansvarsfordeling, ansvarsstruktur, hvem som initierer prosjektet, bruk av data og eventuelt eierskap.

FORMÅL

Formålet med prosjektet er å undersøke forestillinger og oppfatninger blant helsepersonell ved tilrettelagde boliger om brukeres religiøsitet, åndelighet og religiøse praksiser.

UTVALG

Utvalget vil bestå av ansatte ved omtrent tre boliger for psykisk utviklingshemmede. I meldeskjema var det krysset av for at utvalget også ville bestå av beboere/klienter. Per epost 13.01.2017 avklart du at det ikke skal samles inn opplysninger fra, eller om, spesifikke brukere. Brukere vil dermed ikke inngå i utvalget eller i datamaterialet. All informasjon om helsepersonells oppfatning av brukernes tro og religiøsitet skal være på et generelt, ikke-identifiserbart nivå om beboerne.

INFORMASJON OG SAMTYKKE

Utvalget informeres skriftlig om prosjektet og samtykker til deltakelse. Det ettersendte informasjonsskrivet mottatt 13.01.17 er godt utformet.

SENSITIVE OPPLYSNINGER

Det behandles sensitive personopplysninger om de ansattes etniske bakgrunn eller filosofiske/religiøse oppfatning.

TAUSHETSPLIKT OM TREDJEPERSONER

Vi minner om at informantene har taushetsplikt om beboere, og som nevnt har dere et felles ansvar for at det ikke kommer personopplysninger om tredjepart (beboere) inn i datamaterialet. Dette er det godt informert om i det reviderte informasjonsskrivet mottatt 13.01.17. Vi anbefaler at du i

173 tillegg gir en påminnelse om informantenes taushetsplikt i forbindelse med gjennomføring av intervjuene.

PUBLISERING AV PERSONOPPLYSNINGER

Det skal i utgangspunktet publiseres anonymt ifm. prosjektet. I epost mottatt 13.01.17 og i det reviderte informasjonsskrivet har du oppgitt at du ønsker å oppgi informantenes yrkesfaglige og kulturelle bakgrunn i publikasjoner. Du har oppgitt at du vil be om eksplisitt samtykke fra hver enkelte informant til dette. Dersom disse opplysningene vil være identifiserende så anbefaler vi at deltakerne gis anledning til å lese igjennom egne opplysninger og godkjenne disse før publisering.

INFORMASJONSSIKKERHET

Personvernombudet legger til grunn at du etterfølger VID vitenskapelig høgskole sine interne rutiner for datasikkerhet. Dersom personopplysninger skal lagres på mobile enheter bør opplysningene krypteres tilstrekkelig.

PROSJEKTSLUTT OG ANONYMISERING

Forventet prosjektslutt er 31.08.2019. Ifølge prosjektmeldingen skal innsamlede opplysninger da anonymiseres. Anonymisering innebærer å bearbeide datamaterialet slik at ingen enkeltpersoner kan gjenkjennes. Det gjøres ved å:

- slette direkte personopplysninger (som navn/koblingsnøkkel) - slette/omskrive indirekte personopplysninger (identifiserende sammenstilling av bakgrunnsopplysninger somf.eks. bosted/arbeidssted, alder og kjønn) - slette digitale lydopptak

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Appendix 2. Request for participation in a research project (in Norwegian).

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Forespørsel om deltakelse i forskningsprosjektet

“Perceptions of religiosity of people with developmental disabilities”.

Bakgrunn og formål Prosjektets formål er å undersøke forestillinger og oppfatninger som helsepersonell ved tilrettelagde boliger for voksne mennesker med utviklingshemming har om sine beboernes religiøsitet, åndelighet og religiøse praksiser. Disse oppfatninger og forestillinger vil bli analysert i konteksten av religionssosiologisk situasjon i dagens Norge, religiøs, kulturelt og sosioøkonomisk bakgrunn til både personalet og brukere, samt regelverk og standarter som er styrende for profesjonell praksis innenfor habilitering (inkludert internasjonale menneskerettighetene, Norges lovgivning, kirkelige og andre policy-dokumenter osv.). Prosjektet har en kvalitativ karakter og har gruppeintervju som metode.

Utvalget skal bestå av helsepersonell som arbeider ved boliger for voksne mennesker ved psykisk utviklingshemming og skal inkludere både faglærte og ufaglærte ansatte. Det skal bli vagt ut ca. tre boliger i Oslo og en Stavanger. To av boliger i Oslo kommer til å bli kommunale, på vest- og østkanten respektivt, og en kommer til å bli privat/ideell med en kirkelig/diakonal profil.

Hva innebærer deltakelse i studien?

Datainnsamlingen blir gjennomført ved hjelp av gruppeintervju. Intervjuet vil bli gjennomført på arbeidsplassen til informantene. Gruppene vil bestå av 6-8 informanter. Prosjektansvarlig vil stille informantene spørsmål, som de kan diskutere sammen i gruppen. Spørsmålene vil blant annet omhandle hva informantene mener om religion generelt, om beboernes religiøsitet og om religionens rolle i habilitering. Opplysningene vil bli tatt opp på en lydopptaker og senere transkribert. De blir senere lagret kun i prosjektansvarliges datamaskin med passordbeskyttet tilgang og eventuelt også på vedkommende sin ekstern harddisk.

Ingen opplysninger om spesifikke brukere blir innhentet under intervjuene. Siden informantene som helsepersonell har taushetsplikt, er det både intervjuerens og informantenes ansvar for å sørge at ingen opplysninger om spesifikke brukere kommer frem under intervjuet.

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Hva skjer med informasjonen om deg? Alle personopplysninger vil bli behandlet konfidensielt. Alle deltakere i prosjektet skal være anonymiserte, som betyr at ingen av dem kommer frem i publikasjonen under sitt eget navn, alder og kjønn. Det som kommer frem, er deltakernes yrkesfaglige og kulturelle bakgrunn, hvis deltakere ønsker å oppgi dem. Det blir innhentet personlig samtykke fra hver deltaker om man ønsker at disse identiteter kan komme fram i publikasjonen.

Prosjektet skal etter planen avsluttes 30.08.2019. Etter dette skal alt datamateriale fra intervjuer, inkludert både lydopptak slettes.

Frivillig deltakelse Det er frivillig å delta i studien, og du kan når som helst trekke ditt samtykke uten å oppgi noen grunn. Dersom du trekker deg, vil alle opplysninger om deg bli anonymisert.

Dersom du ønsker å delta eller har spørsmål til studien, ta kontakt med Dmitry Lukash, tlf. 98647223.

Studien er meldt til Personvernombudet for forskning, NSD - Norsk senter for forskningsdata AS.

Samtykke til deltakelse i studien

Jeg har mottatt informasjon om studien, og er villig til å delta

------(Signert av prosjektdeltaker, dato)

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Appendix 3. Interview guide – topics for focus groups (in Norwegian).19

19 The introduction to and conclusion of the interview guide is given here in English. Only the main part was sent to the informants prior to the sessions during the recruitment phase. As such, the original wording of the questions in Norwegian was preserved. 178

Introduction.

1. Moderator and co-moderator introduce themselves, and ask group participants to introduce themselves, sharing their name, age, profession, and how long they have worked at the location. 2. Moderator explains the characteristic features of the focus group interview and talks about his duties as a researcher and about participants’ rights and duties as informants and health and care professionals.

Main part. 1. Hva mener dere med religion? Hva betyr religion for dere (personlig og profesjonelt)? 2. Hva tror dere er religion for deres beboere?

3. Dere sikkert kjenner til grunnleggende menneskerettigheter og rett til å praktisere religion blant dem. Fortell om hva er religionsfrihet for deres beboere.

4. Kjenner dere til noen dokumenter som angår omsorg for mennesker med psykisk utviklingshemming fra Det Norske Kirke?

5. Er det noen aktiviteter som dere kan betegne som religiøse som dere arrangerer for beboere og/eller deltar i sammen med dem? Vet dere om noen lignende er arrangert i dagtilbudet? Hvis ja, så hvorfor ville dere betegne dem som religiøse og ikke, f.eks., kulturelle?

6. Har dere noen samarbeid med pårørende angående beboernes religiøs praksis? Hvis ja, på hvilken måte?

7. Kan dere tenke over en situasjon: dere har ansvar for en beboer som dere skal til gudstjeneste sammen med. Hvilken rolle kommer dere til å spille under gudstjeneste?

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8. Markerer dere religiøse høytider i boligen? På hvilken måte?

9. Samarbeider dere med noen religiøse organisasjoner (f.eks. Det Norske Kirke osv.)? Hvis ja, med hvilke og på hvilken måte?

Conclusion.

Debriefing.

The co-moderator gives a short summary of the focus group session and asks if the participants find it correct.

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