Thinking about care in the organization of an ecology is central to the interdisciplinary research group Care Ecologies; found during a lockdown in the spring of 2021 and hosted by ARIAS Platform for Research Through the Arts and Sciences in Amsterdam. In Towards Becoming an Ecology of Care group members Valentina Curandi, Inte Gloerich, Ania Molenda, Maaike Muntinga, Natalia Sanchez Querubin, Nienke Scholts and Marloeke van der Vlugt, offer an initial articulation on their approaches and principles – performative practices, reflection, speculations - of what an ecology of care could be. While each bringing in different understandings of care, staying with those differences shaped the ways in which the agenda of the research group has been (un)settled. To exchange knowledge and experiences, the group uses various on- and off-line frameworks, like presentations and practice sessions. Exploring how activities that sustain a research group – coordinating, meeting, writing and documenting – may be done with care, this paper attempts to present a speculative proposition for functioning as a research ecology on and around care. Bringing into focus what care can do, while being attentive to what is neglected. This is not only done in writing but also becomes visible in the accompanying images compiled of material and immaterial memories. It is an ongoing process, for which the writing of this paper became a catalyst for reflection. While not aiming for clear answers the authors invite themselves and others to become more aware, devising and testing work strategies for care-based practices.
Chronic sorrow involves parents’ enduring grief due to their child’s disability. This stems not only from the recurring painful reality parents face, which differs from the life they had hoped for their children, families, and themselves but from also being confronted with societal and personal norms and expectations they cannot meet. There is a lack of research on the lived experiences of parents’ chronic sorrow. An Interpretative Phenomenological Analysis (IPA) study involving six parents with severely disabled children explored what it is like for parents to confront being ‘‘different.’’ Besides sorrow, the parents experienced intense ambiguity,guilt, and uncertainty while navigating societal expectations and their own perceptions of their children. Their ideas of parenthood and their self-identity as parents proved central to their strategies. This study provides insight into the intricacies of this particular aspect of chronic sorrow in parents, with relevance for research and practice.
Each of us has a story that comes alive as we wake up in the morning, develops throughout the day, and holds layers of meaning as we lay our heads down at night – it might be called a narrative of our identity. When loss occurs, our story fragments into unfamiliar pieces, and who we identify as becomes scattered – sometimes even shattered. We must work to reconstruct meaning in our lives and to rebuild our identity. As leading author on this editorial, with an article of my own in this issue, I confronted this when my father died. I felt his story slipping away, becoming blurred, forgotten, and for some, erased – and the same held true for me. The chaos of my shattered identity exacerbated the deep pain of losing him and I experienced complicated grief. I had to reshape my narrative to remember the authentic parts of me and rebuild a new self in a fatherless world. This journey is in part what motivated me to become a symposium co-editor for the journal. All four of us editors of this special issue have experienced “living with loss” following the premature loss of either our father or spouse, and I wanted to see what lived experience and knowledge we could bring to the readers about loss in the fields of both guidance and counselling.
MULTIFILE
