"I honestly feel like I'm not there or something": a qualitative study of the experience of intellectual disability

Aim: Few qualitative studies exist which explore theexperience of stigma and conception of identity amongadults with intellectual and developmental disabilities(IDD). Research suggests that self-acceptance andidentification with the social category o f ‘disabled’people is integral for developing skills to navigate aworld t hat sociall y d evalues disability. This study aimedto understand how adults with IDD experiencedisability, stigma, and social interactions. Method: 15adults with IDD were interview ed using qualitativemethods. Interviews were analysed independently bytwo researchers using interpretive phenomenology.Results: Three major themes emerged: pressure onparticipants to behave in a socially normative manner;tendency to produce personal definitions of disability;and consistently limited knowledge of and discomfortaround disability terminology. Conclusions: Negativeself-image and understanding of disability in t his studygroup stemmed from initial confusion surroundingdisability terminology, external judgement, and pressureto behave in a socially normative way. Partial, incorrect,or non-existent understanding of disability could pose aserious challenge to individual quality of life, as well asperson-centred action and political movement in thebroader population.