Clocks and Temporalities of Parental Care for Persons with Disabilities
The parent provides care 24/7…
I’m very strict and I followed a very strict routine – even now we’re constantly on various strict routines.
Good care by contemporary families with children with disabilities prolongs their lives, which raises a series of other questions: What happens after they turn 18, how do we care for these young people and their families after they turn 25, 35 or even 50, what happens after we are no longer around?
These words of Galya Koycheva, parent of a person with multiple disabilities, activist and psychosocial support specialist can be often heard in biographical interviews and public discussion on life with disability in Bulgaria (and most probably in talks on the topic of any other parents all over the world). They draw attention to specific timing and temporal horizons, which significantly differ from public calendars and timetables, from model biographies and expectations for personal and professional growth. It is no coincidence that the period after the first encounter with the diagnosis of the disability is experienced as “going out of rhythm” and “going out of the society” – of the society of normal, active and productive individuals. However, this experience does not presuppose entering ahistorical mode. On the opposite, the social changes and generational crisis severely affect the life trajectories and catalyze various deficits and lacks – of financial stability, job opportunities, of adequate health care and public support, which make mothers like Galya Koycheva fear for the future of their children.
What does it mean to live with disability in terms of experience of biographical and social time? Where do the life projects of parents, caring for children with disabilities in Bulgaria intersect or diverge with common work routines, agendas of national institutions or NGOs, and with cultural timing norms in general? What are the chronoholitics and generational contexts that underpin or confront them?
More generally, whether the specific dynamic of the parental care for life with disability (in Bulgaria) can be considered as trigger for the construction of and the adherence to alternative social timings and cultural life protocols, which evinces a strong critical potential for evaluating the social and historical frames of „normality“ and “personal development”.
Bio:
Assoc. Prof. Dr. Galina Goncharova is a lecturer at the Department of History and Theory of Culture at Sofia University “St. Kliment Ohridski”. Her research interests are in the field of Bulgarian cultural history, oral history, anthropology of religion and culture of care. She has published on death and dying in (post)socialism, generational discourses, religious identities and practices, care for life with disability, etc. Together with Ina Dimitrova, she is co-editor of the thematic issue “Disability, Care, Postsocialism”, Critique & Humanism Journal 55 (3), 2022 (In English and in Bulgarian).
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