Family Dilemmas and Secrets: Parents' disclosure of information to their adult offspring with learning disabilities

Self-presentations and intellectual disability

“…Inger and Grete did not know the concept intellectual disability even if they were familiar with their impairments and thus demonstrated that they were not invisible to themselves (Todd and Shearn 1997). However, in their self-presentations they spoke little about the significance of being impaired.…”

“…An identity as intellectually disabled has been described as both comprehensive and 'toxic,' and as an identity that excludes people from many social roles and places them in marginal positions in society (Todd and Shearn 1997). It has also been described as a stigma (Goffman 1963, 11) or a master status that obscures all other identities (Becker 1973).…”

“…To Grete it might be the same as cerebral palsy; the impairment which was the reason why she needed a wheelchair. According to Todd and Shearn (1997) this would mean that Inger and Grete were invisible to themselves because they did not know that they were intellectually disabled. However, Inger knew that she needed help on a daily basis, and Grete was aware that she learns more slowly than others, and they both knew that people they worked with and spent time with in leisure activities had learning difficulties.…”

“…This is supported by Riddell, Wilson, and Baron (1999) who emphasise that more inclusion, as for instance in working life, may lead to better mental health. Todd and Shearn (1997) describe intellectually disabled people as invisible to themselves because they are protected from the ascribed identities by their parents. Furthermore, Craig et al (2002) describe how individuals struggle to come to terms with an identity of intellectual disability.…”

Fumblings and faux pas: Reflections on attempting to engage in participatory research with people with an intellectual disability

“…Numerous studies exploring the identities of people with ID have reported that this ascribed identity has little resonance with those who live with the label and that people with ID reject a stigmatised view of self (Finlay & Lyons, 1998). In contrast, it has been consistently reported that at least some people with ID appear to be unaware of their ascribed identity (Todd & Shearn, 1997). A major criticism of past studies exploring the identities of people with ID is the ascription of a stigmatised identity apriori and a failure to consider the alternative identities an individual may embody (Rapley, Kiernan, & Antaki, 6 1998).…”