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 All rights reserved. No part of this publication may be reproduced or transmitted, in any form or by any means, without permission. 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? ..........................