Dis-mantling stigma: Parenting disabled children in an age of ‘neoliberal-ableism’

Abstract

The concept of ‘stigma’ is a dominant presence in many disciplines, yet it frequently remains ill-defined, individualist, and dislocated from matters of power, inequality and resistance. Extending a budding literature on rethinking the sociology of stigma, I draw upon interviews with parents of children with Down’s syndrome to revisit one of sociology’s most enduring concepts. I explore how parents articulate new imaginaries of difference which depart from narratives of disability as tragic and pitiful, and promote notions of dignity and worth. Parents talk of their children as a reason for celebration and pride, discuss their experiences of convivial community relations and public interactions, and praise evolving configurations of disability in popular media. Yet parents simultaneously highlight painful, convoluted and exhausting experiences with institutions (education, healthcare, welfare) as part of what they believe to be a wider (structural) hostility to disability that forces them into a series of ‘fights’ and ‘battles’. Whilst parents resist deficit framings of their children, and their lives more broadly, they lament dwelling in a society whereby disabled people, and their families, navigate enmity and indifference. In this article, then, I dis-mantle common conceptions of stigma by revealing not only its interactional properties, but also its political economy, in which disabled people are devalued, discounted, and cast as disposable in an age of ‘neoliberal-ableism’ (Goodley 2014).

“The media love the artificial versions of what’s going on”: Media (mis)representations of Down’s syndrome

“…Throughout the interviews, parents acknowledged the presence of more positive and visible configurations of their children, while simultaneously sketching out how parenting a disabled child involves a series of individual (physical/health issues) and structural (healthcare, education, and welfare) impediments. They often referred to the latter as “fights” and “battles,” expressing irritation about bureaucratic obstacles and poor access to resources amplified in the era of austerity (Thomas, 2020). Parents, though more frequently mothers, must “fight for scarce resources in fragmented systems that often do not seem to value their children as people” (Green et al., 2017, pp.…”

“…Such representation is cultivated, strangely, under a backdrop of austerity and indifference toward the lives of people with learning disabilities (including Down's syndrome [DS]). This is exemplified, for example, with respect to poor health outcomes compared to nondisabled peers, limited employment prospects, rising disability hate crimes, dwindling support (e.g., education needs; welfare purse‐tightening), abuse in NHS units, and DS/learning disability being cited as a reason for do‐not‐resuscitate orders (for a summary, see: Scambler, 2018; Thomas, 2020). 8 In describing their own fights and battles , parents in this study flag up the structural shortcomings of an ableist world.…”

“…Privileged parents remain the most empowered to advocate for children by both demanding services and challenging professional authority. Not all parents of children with DS will be able to do this (Thomas, 2020), yet their struggles and frustrations were rarely highlighted in media accounts. There was a concern among some parents that over-determining the "positives" of DS in popular accounts might not only silence parents facing difficult circumstance and discount (classed) differences in relation to access to resources, but that services might be withdrawn if perceived to be thriving ("it wouldn't help your fight necessarily"-Roger 6 ).…”

A legacy of silence: the intersections of medical sociology and disability studies

“…The central source of parents’ everyday troubles—and of their general frustration, upset and angst—was not their child’s impairment effects , but their ‘fights’ and ‘battles’ (eg, for education, welfare, employment and healthcare services) in a society that does not sufficiently support them (Thomas 2021). Megan said:…”

Work aspirations, intellectual disability and ‘cruelling out’ the mark in the job club

“…Moreover, with limited exceptions (Bates et al, 2017; Hall, 2004; Ineson, 2015), there is limited sociological engagement and an absence of questioning the normative assumptions associated with employment for people with intellectual disabilities and, arguably more important, a lack of engagement with the nuanced and complex perspectives provided by the people with intellectual disabilities themselves. This contribution, then, responds to the call for ‘recognising disability as of central importance for the sociological imaginary’ by linking personal troubles to public issues (Thomas, 2021, p. 454).…”