Interview with Inge van Nistelrooij PhD, assistant professor Care Ethics, University of Humanistic Studies, Utrecht, The Netherlands

1. Where are you working at this moment?

I am an assistant professor of Care Ethics at the University of Humanistic Studies, Utrecht, The Netherlands. As far as we know, we have the only Master’s degree in care ethics throughout the world. Together with my colleagues Carlo Leget, Merel Visse, Frans Vosman, Alistair Niemeijer, Vivianne Baur and Anne Goossensen we teach (pre)master’s and graduate students, and do research here, in cooperation with many societal partners.

2. Can you tell us about your research and its relation to care ethics?

My PhD research was a philosophical-ethical study on self-sacrifice in caregiving (2014a, 2014b, 2015, 2017) and brought together care ethics, examples from literary fiction, movies and history, phenomenology, theology, political theory, and hermeneutics. My present research draws upon this work for thoughts and insights that I continue to elaborate and develop further. My research revolves around central insights of care ethics and care theory: relationality, affectivity, care as an attuning practice, embodiedness, vulnerability and dependency, and the political theory on care. I am now connecting all of these dimensions with empirical research. Also new themes emerge, like family care, care and the lived experience of pregnancy, birth-giving and child care, embodied forms of moral case deliberation, and the practice of belonging to a community.

3. How did you get involved in care ethics?

At the age of 18 I wanted to become a spiritual counsellor in hospitals and studied theology. There Annelies van Heijst introduced my fellow students and myself to care ethics. It felt like coming home: an ethical theory that drew upon everyday life’s questions, both on the personal, organisational and political level, that immediately struck a chord with me. Van Heijst’s work has not only become an enormous source of inspiration for myself, she has also developed our Master’s degree program in Care Ethics and Policy. So in more than one respect, hers are the shoulders on which we stand. Of course she was the supervisor of my doctoral thesis with which I graduated in 1995 (cum laude).

This thesis won the thesis award of the Tilburg University and was published as a book, not the first, but still one of the first Dutch books on care ethics, in 1996. As a result, I have been lecturing and publishing on care ethics ever since.

4. How would you describe care ethics?

Of course I could refer to the definition that my colleagues and me developed together (Leget et al 2017, forthcoming). But let me try to phrase it in some other words. Care ethics is an ethics that draws upon the practices to which we owe our lives, in which we are all inevitably involved and on which we spend time every day, i.e. the practices of care. Caring for ourselves, others we live with or meet, our environment, the world. Caring as a practice that essentially builds a ‘life-sustaining web’. What is more, caring is a practice in which we acknowledge and express who we are and aim to be personally and together with others, on an intimate scale with family, friends and colleagues, but also within institutions (e.g. the academia, health care), and as a society. Caring involves our body, our language, our attitude, our abilities, our knowledge and intuitions, the stories that we have heard and the inspiring examples that we received from other people’s lives, our best intentions, and our art. But no less does it involve our vulnerability and dependency, as well as our mistakes and failures, our pain and shortcomings, our misunderstood efforts and the inevitable harm that we cause each other. And care ethics draws upon all of this for seeking the good.

5. What is the most important thing you learned from care ethics?

A Dutch newspaper’s motto has been: ‘whetstone of the mind’. I think that this is what care ethics has taught me: to continuously sharpen insights. It taught me to challenge and change my thoughts and beliefs, over and over again. When I was a student, my thoughts about care and ethics differed quite a bit from what I have been thinking ever since I experienced pregnancy, becoming and being a mother, for instance. The enormous gap between what society expects of its citizens as entrepreneurs on the one hand, and the caring practices of personal life (caring for dependent others, being marginalized when dependent upon care) on the other, still puzzles me. And again, new perspectives challenged the previous ones when for years I taught ethics and trained professional caregivers in ethics. But really, I trained with them. They showed me the institutional and organizational pressure in which they work, the hierarchical power imbalance and lack of moral space, and also how and why they still, sometimes, found meaning in their work. New books and new teachers taught me to change my views again, for instance when submerging myself in French phenomenology and hermeneutics during my PhD study. Stories from fiction and real life, movies, experiences with loved ones who suffered or died, recovered or had to adapt their lives and identities to chronic illness, questioned the perspectives that I had understood before. And new government policies that transfer various forms of caring back into the informal sphere, on top of the care burden for the family, and how new forms of ‘belonging’ on a local level are expected to come about, lead to increasing need for research.

What I think all this comes down to, is that care ethics has taught me the importance of particularism, plurality, temporality, perspective, and the humble claims we can make of ‘truth’, especially in ethics. This does not lead to a conclusion of relativism, but rather to acknowledge the truth of a continuous, multidimensional, hermeneutical dialectic.

6. Whom would you consider to be your most important teacher(s) and collaborators?

As said above, Annelies van Heijst has been my most important teacher and collaborator. Further, I owe a lot to my PhD thesis supervisor Frans Vosman, who encouraged me to read Paul Ricoeur’s work. But it all began and still carries on with what I have learned from the works of Joan Tronto, Nel Noddings, Margaret Urban Walker, Eva Feder Kittay, Sarah Ruddick, and Carol Gilligan, of course. For my new themes I learn a lot from the works of Maurice Hamington, Helen Kohlen, Sophie Bourgault, my colleagues Carlo Leget, Merel Visse and Alistair Niemeijer, all of whom I am grateful to also cooperate with. New teachers, whose books inspire me and whom I would love to collaborate with in the future, are Christina Schües, Daniel Engster, and Jeannette Pols.  And I love the lessons, inspiration and collaboration that I continue to receive from all the professional and informal caregivers and care receivers whom I meet as friends and students and in my family.

7. What publications do you consider the most important with regard to care ethics?

The top 5 would be:

• Joan C. Tronto, Moral Boundaries,
• Eva Feder Kittay, Love’s Labor,
• Margaret Urban Walker, Moral Understandings,
• Sarah Ruddick, Maternal Thinking, and
• Annelies van Heijst, Professional Loving Care.

But still, care ethics is developing and perhaps the most important publications are those who carry the torch at present, carving out new space in international politics, disability studies, feminist studies, health care policy, family ethics and family policy, philosophical anthropology, moral epistemology, environmental ethics (for which the Dutch Henk Manschot coined the term ‘terrasophy’), as for all of these there is still so much work to do. Naming just a few would do injustice to others. The establishment and development of this international care ethics research consortium, is essential for connecting people of all six continents together, preventing a fragmentation of care ethics.

8. Which of your own books/articles/projects should we learn from?

Probably my dissertation Sacrifice. A care ethical reappraisal of sacrifice and self-sacrifice (2015, Leuven: Peeters) would be valuable, but my recent articles draw upon that work and develop it further:

• Nistelrooij A.A.M. van, Visse M.A., Spekkink A & Lange J. de (2017), How shared is Shared Decision Making? A care-ethical view on the role of partner and the family. Journal of Medical Ethics (doi:10.1136/medethics-2016-103791)
• Nistelrooij, A.A.M. van & Leget, C.J.W. (2016). Against dichotomies: on mature care and  self-sacrifice in care ethics. Nursing Ethics, 1-10. doi: 10.1177/0969733015624475
• Nistelrooij, A.A.M. van, Schaafsma, E.P. & Tronto, J.C. (2014). Ricoeur and the ethics of care. Medicine, Health Care and Philosophy, 17 (4), 485-491. doi: 10.1007/s11019-014-9595-4
• Nistelrooij, A.A.M. van (2014). Self-sacrifice and self-affirmation within care-giving. Medicine, Health Care and Philosophy, 17 (4), 519-528. doi: 10.1007/s11019-013-9523-z

I am currently developing the following projects:

• a care ethical view on pregnancy, giving birth and the practice of parenthood as an embodied and meaningful caring practice;
• a care ethical view on ethical reflection (including non-verbal, embodied knowledge) and what this requires of the setting of a caring institution, together with prof. dr. Helen Kohlen, Philosophisch-Theologische Hochschule Vallendar, Germany;
• diversity and caring as co-creative practice in a (local) community.

9. What are important issues for care ethics in the future?

There are many. The core questions remain: how can we include the practices and experiences of everyday life in all its plurality and particularity in moral thought; how can we build a (national and international) society that puts these practices, experiences and knowledge central; and how can we thus carve out space for what those involved in caring experience, know, and have to tell. One of the most urgent questions, I think, in my Western society is the marginalization of those who cannot meet the demands of self-management, independence, participation, and finding their way in the institutional maze of care. Too many are simply overburdened with their condition, with their caring tasks either for themselves or for close others, and require that we as a society are affected by them and care for them. Instead, they are hardly heard, their caring needs are not met because they do not meet the strict criteria that the system poses, or they are losing their supporting network in a cycle of loss: loss of job, loss of status and means, loss of contacts and network, causing increased marginalization and loneliness.

10. How may care ethics contribute to society as a whole, do you think?

I think that the important thing for us to do is to keep sharpening our insights, uncovering real life experiences through empirical research, keep bringing our insights to the fore, educating students and thus disseminating our insights. The problem for small countries like The Netherlands is, that academic requirements demand us to publish in English, international journals. That is essential for the academic exchange, but it simultaneously is a serious threat for our societal impact in our own community.

11. Do you know of any research-based projects in local communities, institutions or on national levels, where ‘care’ is central? Please describe.

I see institutions trying to do so, especially institutions for those whom we used to call people with mental disabilities. But, as the organization Prisma has stated, we should call them people with a societal disability, as the problem is not their mental state, but the ways in which society makes it difficult for them to participate. We are developing our cooperation in research together with Prisma.

Also new, inclusive communities have come about and increasingly seem to grow in numbers, in which people with and without visible impairments live together.

But in our country the dominant discourse in politics, caring institutions and local communities is still that of autonomy, self-management, independence, etc. in a way that still marginalizes caring from the public and political deliberation.

12. The aim of the consortium is to further develop care ethics internationally by creating connections between people who are involved in this interdisciplinary field, both in scientific and societal realms. Do you have any recommendations for us?

I hope and wish that the consortium helps increase the impact of care ethics, by bringing researchers together and enabling cooperation in research and education. I definitely believe that cooperation leads to greater impact, that exchange inspires, that co-constitution of ethics improves its quality, and that care ethics will help build a better society for all. My wish would be to create an international structure that supports this research network. Thoughts that come to mind are: an expert centre that coordinates and supports an international journal, a website, a research fund, annual or biannual conferences etc.