For thirty or so years in Anglo-Saxon countries, and more recently in France, the ethics of care (a Human and Social Sciences school of thought) has criticised the idea borne by progressive thinking since the Age of Enlightenment of an autonomous rational being existing within itself (the modern, Cartesian, western subject). Care thinking identifies a relational, “attached” subject who constructs him/herself and evolves by and within relationships of care. Authors belonging to this school of thought have therefore focused on the vulnerability and dependence which constitute us all, whoever we are, on the resulting need for relationships of care and on the asymmetry and affective dimension of such relationships. At the same time as promoting a new figure of the person and the citizen, the objective of this school of thought is to rehabilitate the practices and values related to care which are often hidden, unspoken, implicit, etc. by offering an alternative model to the dominant approach of the ethics of justice (Tronto, 1993).
This school of thought cross-cut research on disability, but there encountered often quite radical criticism, particularly from another school of thought, the one that emerged from the mobilisation of disabled persons – the Disability Studies. The latter were developed on the basis of a protest against existing practices, notably those of the medicalization and institutionalisation of disabled persons (developed more particularly in the context of re-education and rehabilitation) which are experienced as being considered as infantilizing, oppressive and segregationist. In the 1970s, disabled people involved in the disabled movement reformulated their experience; it was no longer a case of “individuals not being adapted to society” but of “exclusion by society”. They defined their disability as a social construction, a consequence of the architectural, economic, legal and cultural barriers that society imposes on people with impairments, thus challenging the prevalent attitude whereby disability was the social consequence of a person’s biological and/or psychological deficiency. In this way, the now well-known opposition between the medical model and the social model of disability was formed. Disability Studies demanded that disabled persons be given the capacity to decide for themselves and by themselves and to control their own lives (“Nothing about us without us”). In so doing, they criticised the normativity of the able-bodied human (i.e. the bio-functional norm constituting the human being), whilst at the same time promoting the idea of autonomous subjects, who are the only people able to define and assess the services they require and who must be allowed to control them without being caught in affective links with their carers. This demand for autonomy, combined with strong criticism of the power relationships endured up until now in care practices, has been at the heart of fight by the disabled persons’ movement. Firstly, it led Disability Studies to challenge the pertinence of care thinking, and even to denounce it as the pursuance of an ideology for the domination of disabled people, who were constantly portrayed as being affectively dependent and passive (Keith, 1992). In order to focus on disabled people’s autonomy and their determination to control their everyday lives, these authors defended the implementation of a formalised and functional care relationship, of a contractual nature, excluding any emotional dimension. To contrast with the notion of care, they proposed terms such as help, support or personal assistance (Shakespeare, 2000).
Since then, these two schools of thought have been considerably enriched, developing critical feedback on their own stances and thus opening up interesting perspectives. For example, thinking on care has been careful to distinguish itself from a sort of essentialism that some people had ascribed to it, whereby women are “naturally” disposed to offer care to “naturally” weak beings (children, people who are ill, the elderly or the disabled, etc.). Several authors have drawn particular attention to the issue of care work being allocated to certain social groups in accordance with gender, class and racialization (Glenn, 1992; Tronto, 1993). Above and beyond seeing care in terms of the needs to be met, of receivers and providers, research on care increasingly stresses the notion of interdependence. Authors such as E. Kittay (Kittay and Feder, 2002) have also shown that asymmetrical relationships do not always or necessarily mean power relationships, that care relationships are not univocal and that the roles of provider or receiver are never definitively assigned. Regarding Disability Studies, recent generations have criticised a radical definition of disability which completely ignores the experience of the body and of the impairment, the intimate and private dimension of disability; they wish to produce a less abstract conception of the disabled person (Shakespeare, 2006; Thomas, 2007). Finally, other schools of thought have seized upon this issue; the sociology of techniques, for example, has renewed the approach to care and to the person (Mol and al., 2010; Pols, 2006).
Without converging in their approaches or results, these different avenues of research have in common the fact that they consider how to qualify a person engaged in care relations, through the relationships that the person produces and which produce him/her both in the public space and the private. This determination to show that care is not restricted to a dyadic mother-child relationship was an opportunity to renew theoretical approaches and empirical research. We think it would be useful to continue this debate that has been engaged by those two lines of thought, particularly regarding the way in which they draw attention to the importance of examining how the qualification of the relationship affects the quality – qualification – of the people involved. At a time when public disability policies are revolving around the principles of people’s rights, citizenship and social participation, we believe these issues to be of especial importance.
Certain avenues of research would appear to be of particular interest:
- the joint/shared dimensions of care, care givers and care receivers in particular, and the role of each within the care relationship. We feel it is important to examine the apparent division between the passive status of those who receive, who are “dependent”, and those who are “active”, who give. This issue relates not only to the one-to-one relationship but also to the configuration conferred upon this relationship by institutions (and disability institutions in particular). What tensions exist between the desire to protect users and the need to defend their autonomy? This line of research might also be an opportunity to question the role of the social participation bodies more and more introduced in public policies on the possibilities for transforming the status of the care receiver;
- the nature of care; one of the issues is that of the forms or types of care given to disabled persons: what are the stakes of this distinct care qualification? Can we talk about medical or medical-social care? What policies, what bodies and what people models are mobilised in the background?
- the value of care; a line of thinking concerning its moral qualification: the care may be good or bad (as demonstrated by the issue of mistreatment). How can we define “good care”? Who is responsible? What points of view are then promoted? What are the different conceptions of care which can be conveyed by actors and theories and in what ways might they be in contradiction with one another, or, on the contrary, be reconciled? Which type of knowledge is needed to take care of others.
- the figure of the “subject” who emerges from each configuration. Within Disability Studies as within care thinking, the idea has been defended that whether or not we are disabled, we are all constructed by relationships, we live only because we eat, we wash, we treat our illnesses. And that as children, our parents or families look after us, that when we are elderly most of us will need help and care to live our everyday lives, and that we are all only “temporarily able-bodied”. Some authors have nevertheless stressed the fact that sometimes we feel and consider ourselves to be autonomous and independent and at other times we feel dependent, subject to the will of others. Other authors have focused more on interdependence than on any dependence-autonomy alternation; and yet others have tried to reconcile both approaches, on each occasion shaping a different conception of the citizen attached to this person.
In publishing a special issue on the theme of “Care and disability”, Alter’s aim is not to return to the debate surrounding the two approaches (Disability Studies vs. ethics of care), but to take a more in-depth look at and renew the issues that it has raised. Proposals may take the form either of articles of a theoretical nature or of articles focusing on empirical data. They may relate to the different dimensions of the care issue within the field of disability.
- Glenn N.E. (1992), “From servitude to service work : historical continuities in the racial division of paid reproductive labor”, Signs, Journal of Women in Culture and Society.
- Hughes, B., Mckie, L., Hopkins, D., & Watson, N. (2005). Love’s labours Lost? Feminism, the disabled people’s movement and an ethic of care. Sociology, 39(2), 259-275.
- Keith, L. (1992). Who Cares Wins? Women, caring and disability. Disability & Society, 7(2), 167-175.
- Kittay E. (2011). The Ethics of Care, Dependence, and Disability, Ratio Juris, 24(1), pp. 49-58.
- Kittay E.F. and Feder E.F. (2002), The subject of care : feminist perspectives on dependency, Rowman & Littlefield Publishers, Lanham.
- Laugier et Paperman (eds) (2005), Le souci des autres. Éthique et politique du care, Paris, Editions de l’EHESS, Paris. (rééd. en 2011).
- Mol, A., I. Moser, et al., Eds. (2010). Care in Practice. On tinkering in clinics, homes and farms. Bielefeld, Transcript.
- Pols, J. (2006). “Washing the citizen: washing, cleanliness and citizenship in mental health care.” Culture, Medicine and Psychiatry 30(1): 77-104.
- Shakespeare T. (2000), “The Socila Relations of Care”, in Rethinking Social Policy, Lewis G., Gewirtz S., Clarke J. (eds), London-Thousand Oaks, The Open University, Sage Publications Ltd:52-65.
- Shakespeare T. (2006), Disability rights and wrongs, Routledge, New York.
- Thomas C. (2007), Sociologies of Disability and Illness, Contested Ideas in Disability Studies and Medical Sociology, Palgrave Macmillan, New York.
- Tronto J. (1993). Moral Boundaries. A Political Argument for an Ethic of Care, New York, Routledge.
- Watson, N., Mckie, L., Hughes, B., Hopkins, D., & Gregory, S. (2004). (Inter)Dependence, Needs and Care: the potential for disability and feminist theorists to develop an Emancipatory model. Sociology, 38(2), 331-350
- Proposals for articles (title and 500-word summary) to be submitted by 30th September 2013. An initial selection will be made;
- the articles – in compliance with the instructions given to the review’s authors – to be handed in by 31st January 2014 and then read by two anonymous referees;
- the final version of accepted articles to be handed in by 31st May 2014;
- the articles will be published in the first issue of 2015.
Project coordinated by Aurélie Damamme (Université Paris 8, CRESPPA GTM), Emmanuelle Fillion (Maison des sciences sociales du handicap) and Myriam Winance (INSERM)
The articles must follow the instructions given to the authors of the “Alter” review, available from http://www.elsevier.com/journals/alter-european-journal-of-disability-research-journal-europeen-de-recherche-sur-le-handicap/1875-0672
Proposals for articles must be sent to three addresses:
Abstracts and papers might be written in English or French.