Providing care is a moral act. According to care ethics, provision of care aims to satisfy the needs and promote the well-being of vulnerable others. To this end, the one-caring takes decisions regarding the assumed best interest of the cared-for (Noddings 2002). Although the definition of care is closely related to cultural and contextual factors, care in general is considered both a labour and an ideal that guides normative judgement and action (Held 2006). Hence, care may be understood as a virtue or motive (Rachels 1999). Tronto (2005) suggests that care involves the following elements: a) attentiveness, aiming to recognize the other’s needs; b) responsibility as a behaviour that is different from obligation; c) competence, in terms of having the adequate knowledge to provide care; and d) responsiveness, as the outcome of understanding the vulnerability of the cared-for and the inequality in the caring relationship.

In the context of impairment, being cared for is sometimes inevitable, particularly when the impairment is severe. Thus, some disabled people may find themselves permanently dependent on others. According to Oliver (1989) though, disabled people’s dependency on non-disabled people is not a de facto situation; in contrast, it is created ‘not because of the effects of the functional limitations on their capacities for self-care, but because their lives
are shaped by a variety of economic, political, and social forces which produce this dependency’ (p. 17). Thus, in a context where caring for disabled people is considered a moral obligation of the non-disabled ones (Kittay 2011), particularly of mothers (Tronto 2005), and an act of welcomed philanthropy towards some allegedly pitiful, incapable, and less than human creatures (Oliver 1989), caring may eventually generate unequal power relations, stigmatize the cared-for as a weakling, and thereby reproduce disability
(Scott and Doughty 2012).

Even though being a disabled parent may be a challenging and fulfilling task, which may imply ‘recapturing’ a lost gender (Ganle et al. 2020), in the long-term the combination of parenthood and disability may entail receiving care from adult children (Ireland and Pakenham 2010). According to Heger (2017), adult children, daughters more often, seem to feel a social obligation to take care of their disabled parents. However, being the one-caring for a disabled parent is not always an easy task. Thus, elevated levels of anxiety and greater adverse caregiving experiences have been reported by some children of disabled parents compared to children of non-disabled parents (Shepherd-Banigan et al. 2020). In addition, likely negative caregiving experiences, coupled with lack of choice, seem to be closely related to poor adjustment to caring for a disabled parent (Heger 2017).

On the other hand, it is argued that caring for a disabled parent may result to benefits for the one-caring child, because of reaching higher levels of maturity and independence, as well as acquiring practical skills (Ireland and Pakenham 2010). Hence, it seems that there are contradictions regarding the literature around the impact of caring for disabled parents on non-disabled children, which need to be better explored.

Since simply imagining what life is like when a non-disabled person giving care becomes a disabled person needing caring, and the opposite, is not enough, it seems essential to go beyond the superficial, aiming to comprehensively understand the impact of an event like disability and its dimensions. However, observations made by outsiders may miss a large part of what disabled people really think and experience (Oliver 1990). For this reason, it seems essential to listen to the stories of disabled people, who had to switch roles, in the context of reality, within which an interpretation of care as a tool for (dis)empowerment and (in)dependence may occur. Thus, through a shared activity of meaning-making, a better understanding of care in the context of disability may occur.

The aim of this study was to explore and understand the experience of care in the context of disability. The main research questions were: 1. Why does the one-caring provide care to a disabled sibling and how is the received care experienced by the disabled care-for person? 2. How switching caring roles is experienced by the former and current one-caring and the former and current cared-for person? 3. What are the implications of the distorted power relations for the former and current one-caring and the former and current cared-for, at the personal and family level? To answer the research question, a qualitative case study approach was adopted. The research was conducted in Cyprus, which is a member of the European Union and therefore has approved the European Disability Strategy and the United Nations’ Declaration for the Rights of Persons with Disabilities. However, Cypriots are still prejudiced against disability and have negative stereotypes about disabled people, reflected in their tendency to interpret disability based on the medical and charity model. The key informants were two women, with whom the researcher was acquainted. They were purposively selected to participate in this research, because they both had experience of being a) a disabled person, b) the one-caring, c) the cared-for, d) a woman and e) a member of a patriarchal society that considers caring as a virtue of women. Trying to gain a comprehensive understanding and to capture the participants’ insights and experiences, data was collected with two personal semi-structured interviews. The interviews were carried out nine months after the stroke that turned the one-caring mother to a cared-for disabled parent and the cared-for disabled child to the one-caring daughter. Interview questions aimed at gathering information regarding the experience of disability as a disabled and non-disabled person, the perceived level of independence, the process of transition throughout oppositional roles, the subjective understanding of well-being and the efforts to adjust to the role of the one-caring and the cared-for.

Based on the narratives of the two participants in this study, it may be concluded that effective care in the context of disability is closely related to Tronto’s (2005) suggestions about attentiveness, responsibility, competence and responsiveness. As evident in the above case study, there were shortcomings that prevented care from becoming a tool for the independence and empowerment of the disabled cared-for. Thus, Anna did not recognize Lena’s needs, nor understood the inequality in the caring relationship with her daughter, while Lena felt obliged to take care of her mother and tried to respond to her needs, albeit her lack of competence. As a result, interdependence between the two women continued, while it was enhanced by Anna’s denial to accept loss of power and independence, as indicators of dignity, on the one hand, and, on the other, Lena’s limited skills and readiness to become independent and take control of her own and her mother’s life, as indicators of empowerment. Yet, switching the roles between the one-caring and the cared-for enabled self-reflection and paved the path towards the acknowledgement of the limitations and the harm that may occur because of the unequal power relations, such as the relationship of care in the context of impairment. Thus, the findings of the present study support the potential for overcoming the barriers to independence by moving out from the comfort zone of dependency and undertaking responsibilities, such as taking care of a disabled sibling. In this way, disabled children may be empowered and learn to pursue a higher level of independence, while parents may acknowledge the need to reframe care and encourage their children to act autonomously.

Ganle, J. K., R. R. Apolot, T. Rugoho, and J. Sumankuuro. 2020. “‘They Are My Future’: Childbearing Desires and Motivations among Women with Disabilities in Ghana – Implications for Reproductive Healthcare.” Reproductive Health 17 (1): 151–161. doi:10.1186/s12978-020-01000-y. Heger, D. 2017. “The Mental Health of Children Providing Care to Their Elderly Parent.” Health Economics 26 (12): 1617–1629. doi:10.1002/hec.3457. Held, V. 2006. The Ethics of Care. New York, NY: Oxford University Press. Ireland, M. J., and K. I. Pakenham. 2010. “Youth Adjustment to Parental Illness or Disability: The Role of Illness Characteristics, Caregiving, and Attachment.” Psychology, Health & Medicine 15 (6): 632–645. doi:10.1080/13548506.2010.498891. Noddings, N. 2002. Starting at Home: Caring and Social Policy. Berkeley, CA: University of CA Press. Oliver, M. 1990. The Politics of Disablement. Basingstoke: Macmillan. Rachels, J. 1999. The Elements of Moral Philosophy. San Francisco, CA: McGraw-Hill. Scott, A., and C. Doughty. 2012. “Care, Empowerment and Self-Determination in the Practice of Peer Support.” Disability & Society 27 (7): 1011–1024. doi:10.1080/0968759 9.2012.695578. Shepherd-Banigan, M., K. A. Jones, K. Wang, N. DePasquale, C. Van Houtven, and J. M. Olsen. 2020. “Mechanisms through Which a Family Caregiver Coaching Intervention Might Reduce Anxiety among Children in Military Households.” Maternal and Child Health Journal 24 (10): 1248–1258. doi:10.1007/s10995-020-02964-w. Tronto, J. C. 2005. “An Ethic of Care.” In Feminist Theory: A Philosophical Anthology, edited by A. E. Cudd and R. O. Andreasen, 251–263. Malden, MA: Blackwell Publishing.