Postdocs
The Disability Family: Case studies of the care and governance of families with congenital deaf blind children in Norway and The Netherlands 1850-2020
The Disability Family: Case studies of the care and governance of families with congenital deaf blind children in Norway and The Netherlands 1850-2020
Prosjektperiode
April 2020–March 2023
About the project
In the modern welfare state, the family has increasingly become the locus for the governance of disability. Rather than place our citizens with multiple disabilities in diaconal or state institutions as was previously custom, the current locus and utopia of such care is the family. Yet, remarkably little is known about these families’ experiences of living between such an ideal and reality and so their particular kind of everyday citizenship. Of course, there are many studies on family and disability, yet these are typically located within the domain of special pedagogics, psychology or habilitation, evoking a medical or state interventionist discourse.
This study, however, compares family experiences with care for congenital deafblind children in The Netherlands and Norway through the combination of a social scientific ‘governance approach’ and a spatial analysis using Foucault’s concept of heterotopia (as well as Henri Lefevbre). That means it combines an analysis of families’ structural location with an analysis of their lived experiences hereof. (1) What do families experience in their daily life with a congenital deaf-blind child when seen from within this heterotopia? (2) How has the role of the family historically changed in relation to the diaconal and public care system? (3) How can a description of (altered) power relations and contemporary 'user knowledge' contribute to an understanding of these families’ epistemic agency?
I take a Participatory Action approach and involve families and parental organisations in several stages of knowledge production. I use semi-structured qualitative interviews, user panels as well as participant observations of the communicative interactions between family and care providers. The study is structured along a multiple-case embedded design and follows a case-study method.
With this concept of the disability family, I seek to give status to these families’ voices and heighten their epistemic status. The project analyzes the construction of what I think is a historically new form of disability governance. Furthermore, the project allows for a historical interrogation of the interplay between Christian Diaconia and shifting welfare regimes in this governance, and the care for citizens with deaf-blindness, specifically.
Background
I am a comparative political scientist, previously educated at the New School for Social Research in New York (MA 2005 and Mphil. 2010). I have a dissertation from the Faculty of Theology, University of Oslo (2019).
My general research interest addresses the ways in which welfare states and institutions respond to matters of religious, cultural, or bodily diversity in the citizenry. I address in particular themes related to religion, immigration, and disability and my research has a strong methodological, historical and international orientation.
My latest book “Governing Cemeteries” compares state responses to Muslim and humanist burial needs in three European countries. Such accommodation is typically understood in terms of national models. I show, however, that policy responses in fact follow distinctive types of logic between the various levels of governance, and that material solutions matter as well. While indeed large legal and discursive national differences between states remain, in praxis they do the same. In a departure from this major finding, I outline a methodologically more coherent research agenda for the comparative study of religion, secularism, society, and state.
Breemer, R. v. d. (2021) Governing Cemeteries: State Responses to the New Diversity in The Netherlands, Norway, and France (Volume 30 Edition 1). Vandenhoeck & Ruprecht. Read open access book here.
In my most recent article, I explore structural care relationships between health care professionals and families with children with disabilities. I address some of the specific epistemic challenges that these families can face and elaborate on them in light of Miranda Fricker’s (2007) framework of epistemic injustice and Michel Foucault’s notion of counter conduct (1978).
Breemer, Rosemarie van den (2022) Epistemisk urettferdighet og motstand i livet til familier med barn med nedsatt funksjonsevne, i Wyller, T. & Lid, I. M (ed.) Makt, motmakt og praksis. Bidrag til kritisk refleksjon innen diakoni og velferd, Cappelen Damm Akademisk, Open Access.
For a presentation of my postdoctoral project for the Norwegian National Center of Competence for Deafblindness (NKDB) (08.06.2021):
‘Parents as co-researchers: Participatory research in a project on family experiences with children with congenital deafblindness’. See webinar Research Methods in Deaf-blind studies here.
Earlier Work
Breemer, R. v. d., Casanova, J., and Wyller, T. (ed.) (2014) Secular and Sacred? The Scandinavian case of religion in Human Rights, law and public space. Vandenhoeck & Ruprecht. https://doi.org/10.13109/9783666604492
Breemer, Rosemarie van den and Maussen, Marcel (2012). ‘On the Viability of State-Church models: Muslim Burial and Mosque Building in France and The Netherlands,’ Journal of Immigrant & Refugee Studies, 10:1–19. https://doi.org/10.1080/15562948.2012.693037
Research groups
Supervision
PhD, VID: Sadeta Demic, Phd Project Beslutningsstøtte, utviklingshemming og hverdagslivets medborgerskap
MA Thesis, VID: Bezawit Teshome Hika: ‘En kvalitativ studie av ansatte i bofelleskap for beboere med psykiske lidelser og koordinatorer på NAV, deres tanker om og holdninger til sine beboeres arbeidsmuligheter.’
MA Thesis, UIO: Marie Clæsen: ‘Religious perceptions and NGO aid: How perceptions of religion might influence the support offered to immigrants and refugees in Dutch NGO’s’.
Other functions
Reviewer for the journals:
Critical Research on Religion
Scandinavian Journal of Disability