Panel 9: Activism, Advocacy, and Care

Tuesday 6 September, 2016.

By Gaby Smith and Zoë Shacklock

  • Alexandra Endaltseva (Linkoping University, Sweden), ‘To care FOR and to care ABOUT: disability knowledge work and communication in the context of Russian MS society’
  • Sally Chivers (Trent University), ‘Not an activist? The puzzling place of advocacy in care advice’


-Forms of advocacy, action and activism within contemporary global societies and local communities.

-Being a reluctant, everyday activist and addressing the role of media campaigns.

Alexandra Endaltseva presents today her preliminary results, and on a personal note mentions that she cares about this research very much. It is part of a larger current project that she is working on, that is also her own PhD research.

She describes her research as a journey- and in honing in on one part of her study, where she has been collecting her data within the STS field: the interdisciplinary relationship between communication and social movements and disability studies is vital. In looking at how the Russian Multiple Sclerosis Society (RuMSS), this work highlights the role of communication, but also the importance of action, speaking to how the body can be affected by this condition.

Under the category of care, she shares contextual knowledge and encourages this specific type of care activism. Through this, using some of the real, authentic conversations had with people- this research opens up a wholly honest dialogue, giving a voice to this area of study in order to improve lives, and inclusion. In each model (whether biomedical, or social), discourses of care become used a symbol. Referring to Bitzer (1992) there is the suggestion that imperfection may be marked by urgency, but this produces audience, or in other words, agents of change. Thus overall, leading to possible action.

Activism in the knowledge about one’s one body and an action based on personal experience, speak to the critical realist approach to disability that Alexandra discusses within her research on the ‘School of multiple sclerosis in Russia’. In the context of the knowledge of the body and one’s social rights, the School’s intent is to initiate the societal shift from bio-beaurocratic understanding of disability and disease to a bio-socio approach. In aiming to construct health, (a state that is ever-changing) the school’s main aims revolve around talking, sharing, and showing the different facets of care and living with MS.

Sally Chivers discusses the often ‘unsung hero’- the carer at home, and usually ‘the good girl’ role taken on by many women from all corners. Drawing from various forms of C21st ‘advice literature’, Sally argues that even when the advice is useful- it can be damaging. She highlights this in the texts Mindful Caregiver and 36h Day, which draws together aspects of neoliberal rhetoric, yet also conveys the character of ‘the good girl’ caregiver through blame, guilt, and other systemic struggles faced.

The pamphlets, videos, and guidebooks that do address the need for care position the moral responsibility and usually place this type of care on the female household member. By not addressing the systemic issues of institutional care, which are often aggravated by austerity, Chivers places this in a Canadian context, highlighting the Ontario situation. The ‘Put Ontario Patients First‘ campaign which, is argued to capitalise on a general public fear of caring for an ageing population, featured white, middle-aged, middle-class women who in fighting for healthcare and appropriate state help stated that they were not activists, but dubbed themselves as healthcare quarterbacks for their entire families.

Thinking through the trajectory of the good activist and in the discussion of how and why austerity depends on ableism, the issues emerge that place a depoliticisation of care at the centre of becoming an everyday reluctant activist. The paper touches on Evelyn Nakano Glenn observation in that, ‘paid caring has not been included in the modernisation of labour relations.’ Both paid and unpaid care work become an issue of a particular type of ableism, often depending on the individual, the work that must be done, but also the way in which media plays a role in the conversation around care advocacy.

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