“They don't think I can cope, because I have got a learning disability…”: Experiences of stigma in the lives of parents with learning disabilities

Abstract

Background Parents with learning disabilities report facing a widely held ‘presumption of incompetence’, placing them under pressure to prove their parenting competence. In collaboration with a learning disability theatre company, an inclusive research methodology explored experiences of parenting with learning disabilities, with a specific focus on the operation of stigma in parents' lives. Method Interviews with 17 mothers and 5 fathers who self‐identified as having learning disabilities were co‐facilitated by learning‐disabled co‐researchers, and analysed using thematic analysis, with input from people with learning disabilities. Results Thematic analysis generated four key themes; (1) positions of powerlessness, (2) assumptions of incompetence, (3) challenging assumptions and proving competence and (4) claiming power. Conclusion Parents reported experiencing stigma and disempowerment within their networks, yet continued to embrace their valued parental identity and drew strength from involvement with self‐advocacy organisations. The research informed arts‐based performance pieces and resources aimed at training professionals and raising public awareness.

Support as described by fathers with intellectual disabilities

“…Parents with intellectual disabilities believe that support they need should be long-lasting and consistently provided, be adequate and responsive to their individual needs (Koolen et al, 2020), and be provided in a sensitive and empowering way (Franklin et al, 2021).…”

“…Furthermore, professionals are expected to be motivated by an underlying belief that parents do have capabilities and strengths despite living with disabilities (Franklin et al, 2021;Koolen et al, 2020).…”

“…Parents with intellectual disabilities believe that support they need should be long‐lasting and consistently provided, be adequate and responsive to their individual needs (Koolen et al, 2020), and be provided in a sensitive and empowering way (Franklin et al, 2021). Furthermore, professionals are expected to be motivated by an underlying belief that parents do have capabilities and strengths despite living with disabilities (Franklin et al, 2021; Koolen et al, 2020).…”

“…On the one hand, professional support can be assessed positively, especially when opportunities for deeper, more empathetic relationships are created. On the other hand, some professionals tend to reduce parental rights to self‐determination and treat parents with intellectual disabilities in a condescending way (Franklin et al, 2021; More & Tarleton, 2021). The basis for a positive assessment of support is understanding, trust and cooperation with parents, alongside the educational dimension of support to assist in the acquisition of competences that increase parents' independence (Booth & Booth, 2005; Starke, 2022; Tarleton & Ward, 2007).…”

“…Available research indicates that parents with intellectual disabilities experience social isolation and stigma, negative attitudes that devalue their parenting capacity, and lack of support adequate to their needs (Booth et al, 2005; Booth & Booth, 2004, 2005; DeZelar & Lightfoot, 2021; Feldman et al, 2002; Franklin et al, 2021; Höglund et al, 2013; McConnell & Llewellyn, 2000; McGaw et al, 2010; McIntyre & Stewart, 2011; Parents Labeled with Intellectual Disability, 2008; Stenfert Kroese et al, 2002).…”