Teenage worlds, different voices: an ethnographic study of identity and the lifeworlds of disabled teenagers who use Augmentative and Alternative Communication

This study explores identity and the lifeworlds of disabled teenagers who use Augmentative and Alternative Communication (AAC). Drawing on theoretical influences from Childhood Studies, Disability Studies and Social Anthropology it uses ethnographic methods, to investigate the lives of nine key participants aged 10-18 years. Participant observation in schools, homes and clubs, and extended narrative conversations were conducted with participants over 18 months. Interviews and focus groups with parents, school staff and 15 additional teenage AAC users contextualize the data. Three adult AAC users contributed as research advisors. Thematic analysis generated four main themes: Voices, Selfhood, Bodies and Personhood. These revealed that the participants view themselves principally as ‘normal’ teenagers, whose families and friends are important, and who aspire to live the same lives as their non-disabled peers. They paint positive pictures of themselves as sociable and competent without highlighting their impairments, although they acknowledge disability as part of their identities. They have pragmatic attitudes towards the effects of their impairments. Their main concern is to have appropriate, reliable technology, and friendly, respectful assistance, enabling them as much autonomy as possible. Their self-perceptions are matched closely by the views of those who know them best. These people emphasise the teenagers’ social relational selves rather than their impairments. In contrast, those who know them less well, over-emphasise their differences and fail to recognise their teenage selves. Judgments about who they can be are then made on the basis of what they can do. Thus for the participants there is an ontological dissonance between how they see themselves (selfhood) and the way they are often seen by unfamiliar others (personhood). They are annoyed and frustrated by these misattributions, but unlike disabled people without communication impairments, it is especially difficult for these young AAC users to resist and correct misunderstandings about who they are.