The Lived Experience of a Mother of a Young Adult with Intellectual Disability: ‘My Daughter as My Enlightenment’

Rieck, Murray, et al. (2019). The Lived Experience of a Mother of a Young Adult with Intellectual Disability: ‘My Daughter as My Enlightenment’. Scandinavian Journal of Disability Research, 21(1), pp. 49–57. DOI: https://doi.org/10.16993/sjdr.560 RESEARCH ARTICLE The Lived Experience of a Mother of a Young Adult with Intellectual Disability: ‘My Daughter as My Enlightenment’ Murray Rieck1, Jane Shakespeare-Finch1, Mariann Märtsin1 and Marie Knox2 1 Queensland University of Technology, AU 2 The University of Sydney, AU Corresponding author: Murray Rieck () There is a paucity of research exploring the experiences of mothers of a young adult with intellectual disability sharing the family home. A case study using a phenomenological life story approach was conducted to gather and analyse data from 11 in-depth interviews held with a mother, Linda, about her experiences. Linda’s story yielded three main themes, 1) an intense struggle and hardship of living ‘in the void’, 2) gathering resources and coping to counter the ‘masters of the universe’ and 3) developing a new ‘personal infrastructure’ to exit the void. Discussion underscores the value of stories of mothers and people with disability, including those of ableism, oppression, and stigma. Linda’s story depicts a complex and intricate life with both challenging and enriching times and a strong need for belonging to community. Future research is suggested, such as how mothers manage and negotiate barriers and systems within their lives. Keywords: parent; lived experience; young adult with intellectual disability; phenomenology; growth; meaning Introduction While much research exists regarding mothers of children (e.g., Loukisas & Papoudi 2016) and older adults (e.g., Knox & Bigby 2007) with intellectual disability, there is less in-depth exploration of their lived experiences with their son or daughter at the young adult stage. This single case study explores the life experience of a mother Linda living at home with as the primary carer for her young adult daughter, Sarah, who has intellectual disability. Thus, it provides a unique opportunity to explore a mother’s lived experience as understood and described by her, rather than focusing on predetermined elements of her life. Hence this paper contributes to fill a significant gap of knowledge in this area. Mothers, Caring, and Young Adulthood The motherhood role is held as a gender-based role and thus issues for mothers are also gender based, especially for those with a child with disability (Traustadottir 1991: 211). Traustadottir (1991) identified three main meanings of caring: ‘caring for’, when mothers provide the caregiving itself; ‘caring about’ which refers to the love and affection for our children; and ‘the extended carer role’, when the caring role extends into addressing wider societal concerns. Kelly (2016) explored the tensions between the disability and feminist movements about understanding ‘care’. The disability stance is where the notion of care is somewhat rejected as it is understood to diminish choice and control for the person with disability, while the feminist movement focuses on valuing gender-based forms of labour. Kelly (2016) argues that if this tension is upheld, understanding and care provision should be enhanced more broadly across the dimensions of care. Traustadottir (1991: 225) found that parents (often mothers) of a child with disability experience a level of complexity of advocating for their child that other parents do not. Ryan and Runswick-Cole (2008: 43) suggest that for many mothers this may begin with advocacy, but with such complexity often translates into a stronger activist role which becomes a significant element of the mother experience. They also suggest that mothers use several resources to support and advocate for their son or daughter with disability. More recently mothers have become activists, using internet blogs to share negative and distressing experiences of disability (e.g., Loukisas & Papoudi 2016: 128; Mydaftlife 2015). Parents of people with disability are often referred to as ‘carers’. This ‘carer’ labelling devalues parents’ roles and responsibilities and diminishes the relationship between mothers and their adult/child with disability (Nolan, Grant & Keady 1996). Indeed, as Beckett (2015) asserts, the stigma of labelling and stereotyping of the person with disability 50 Rieck et al: The Lived Experience of a Mother of a Young Adult with Intellectual Disability spreads to family members and close others. However, most parents do not identify themselves as in the carer category and argue the clear distinction between ‘caring for’ and ‘caring about’ someone (Kelly 2016: 17–24). Young adulthood is a significant and sometimes difficult transition time, as individuals typically make major adjustments to their life and learn to cope with change and new experiences (Lenz 2001: 300). This family life-stage is the focus of this study. Importantly, this transition is also a time where change in the parent-child relationship occurs (Kim & Turnbull 2004). Disability, Ableism, and Stigma Problematic issues associated with intellectual disability are those of ableism and stigma. Stigma is a crucial concept in the experiences of people associated with disability (like mothers) (Goffman 1963). Goffman (1963: 45–57) coined this stigma ‘courtesy stigma’, where someone is degraded or disrespected by society because of their association with someone already experiencing stigma. As people with disability are often stigmatised by society, so too – in the present context – mothers of a young adult with intellectual disability may also experience courtesy stigma. Campbell (2012: 215) described two dominating features of ableism. The first is the concept of the ‘normal’ or normative person; someone who is ‘able’ of mind and body (however that may be perceived). The second refers to a ‘constitutional divide’ involving a separation of the notion of the normative ‘human’ person from the ‘aberrant’ referring to ‘subhuman’. While an ableist standpoint might accept that people with intellectual disability are tolerated and treated fairly, it does not necessarily propose that they are an accepted member of a diverse society or that there should be a community culture where disability should be welcomed and celebrated (Campbell 2012: 213). Thus, they and people associated with them have their identity redefined, and sometimes allocated a lower social standing with associated negative stereotypes (Beckett 2015). With these stereotypical and somewhat offensive perspectives, a person with intellectual disability is viewed as sub-human, a social nuisance, and whose delayed development inhibits progression into adulthood. Potential for Complexity The above brief review has demonstrated concepts and themes leading to a potentially complex life. A further complexity portrayed in the research of people without disability as a positive (...truncated)