Activity: Talk or presentation types › Invited talk
Between 2014 and 2018, the statement of special educational needs (SEN) was gradually replaced by an education, health, and care plan (EHCP) (DfE, 2015; Ko, 2015; Lithari and Rogers, 2016). Policymakers intended that the EHCP’s would be ‘much more personalised’ as parents and carers would be ‘supported to state their priorities and preferences’, resulting in a ‘person-centred approach’ which aimed ‘to meet their personal circumstances, and not as directed by professionals as in the previous process’ (Ko, 2015: 446). Previously, research into parents’ involvement and encounters with institutional professionals has discovered that disability provisions which are perceived as ‘family-centred’ (Whyte and Hart, 2003) are often saturated with barriers which are counter-productive to positive outcomes for both the child, and indeed, the family (Arango 2011; Kruijsen-Terpstra et al., 2016; Kuo et al., 2012; Lithari and Rogers, 2016; Rogers, 2007, 2011, 2016).
Utilising qualitative data from research undertaken during 2016 within this transitional period, this presentation focuses on the lives and experiences of mothers within the dwarfism community as they attempt to negotiate health, care, and education provisions following the birth of their child. This research extends upon Rogers’ (2016) care ethics model of disability – which seeks to demonstrate how care should be understood relationally. Covering interactions from professionals within public spaces, to online dwarfism support networks, the findings from this qualitative investigation reveal how professionals can be seen to exploit the participant’s mothering role, by removing or subverting their own care responsibilities; essentially leaving mothers to ‘battle’ for SEN provisions which benefit the school in terms of finances. Drawing on Rogers’ (2016) theoretical model, the findings from this research further illustrate how the caring spheres are inter-relational: care-work undertaken within the dwarfism community often leaks into other spheres. The findings from this study suggest that specialist knowledge gained from the online dwarfism spaces are often used within the practical and socio-political caring spheres, where mothers face obstacles when trying to ensure appropriate education provisions are available for their child.
4 Jul 2018
Creating Diverse Coalitions for Equality in Neoliberal Times: Locating the Emancipatory City?