Care in the context of disability: a tool for (in)dependence and (dis)empowerment

Abstract

The aim of this study was to explore care in the context of disability as a tool to promote independence and empower disabled people. The study was based on the case of two women, Anna and Lena, who switched the roles of being either the cared-for or the one-caring. Data was collected with semi-structured interviews with the above mother and daughter. The participants discussed their experiences and feelings regarding the process of switching roles and taking responsibilities, the barriers to independence and autonomy, the implications of disability on the personal and family level, the process of adaptation to disability and their expectations for the future. It was found that switching roles had a twofold and oxymoron effect: on the one hand, a negative impact on the former one-caring’s self-esteem and level of dependence was observed and, on the other, a positive impact on the disabled daughter’s autonomy and independence occurred.

Points of interest

• Providing care is a moral act, which involves the one-caring and the cared-for.

• Caring may generate power relations and mutual dependence.

• In the context of impairment, sometimes need for care may be unavoidable. For this reason, dependence of some disabled people on non-disabled others may be observed.

• In Cyprus, caring for disabled siblings is considered as a moral duty and a virtue of females. For this reason, some women may devote themselves to caring for disabled siblings to feel valued and worthy.

• Switching the roles between the one-caring and the cared-for may be beneficial for the latter, because becoming the one-caring may result to feeling independent, self-confident, and free from previous control.

• In contrast, becoming the cared-for was related to increased stress and difficulties to adapt to impairment, since the new role was interpreted as acceptance of being depended on others and thereby unwanted loss of power.

Keywords:

• Disability in the family
• parents with disabled children
• children with disabled parents
• care ethics
• empowerment
• interdependence

Acknowledgements

The author would like to thank Anna and Lena for their willingness to participate in this research and share their experiences.

Disclosure statement

No potential conflict of interest was reported by the author.

Additional information

Notes on contributors

Eleni Damianidou

Eleni Damianidou is a Scientific Collaborator at the European University Cyprus, where she teaches modules related to inclusive education and learning difficulties. She also works as a secondary education deputy headteacher. She holds a PhD in Education Studies and post-graduate degrees in Special and Inclusive Education, Adult Education, Educational Administration, Psychology of Work and Behavioural Management. Her research interests include special and inclusive education, home-school relationships, teacher training for inclusion and critical pedagogy. She is an active presenter in international conferences with papers on educational issues, which have been published in peer-reviewed journals.