The lived experience of acquired physical impairment in youth

Abstract

During our life course, we embark on different journeys, some planned and some unexpected, one of which could be the acquiring of a physical impairment. Oliver, Zarb, Silver, Moore and Salisbury (1988) described this significant life event as a complex relationship among the impairment, the social context and the meanings individuals utilise to make sense of the experience. This inquiry aimed to present the lived experiences of acquiring a physical impairment in youth, according to the meanings ascribed by the persons themselves. The research focused on what this experience entails, what it means to experience this phenomenon in youth, the changes that this experience might generate and the potential impact of others. Existential-hermeneutic phenomenology and the emancipatory principles informed the conceptual framework of this work. Using interpretative phenomenological analysis (IPA) as the methodological framework, information was gathered through face-to-face, topic-guided interviews with six persons who acquired a physical impairment of sudden onset in youth and are living in the community. The experience was principally depicted as a rollercoaster ride. There seems to be a fluctuating paradox of sameness and difference as the individuals experience the phenomenon, reach new understandings and move along the hermeneutic circle to reach a new mode of being-in-the-world. This paradox was reflected in the participants’ daily lives, self-concept, relationships, careers, interests, attitudes and future expectations. The experience was also marked by positive outcomes and the sense of continuity transpired as the stabiliser which enables the person to experience the being-in-the-world in an ordinary way. Acquiring the impairment in youth was believed to have helped in responding better and quicker to the situation. Most participants held fast to their youth identity and persevered in their respective roles, despite the inevitable changes that occurred. Changes were linked with day-to-day routines, the home environment, employment opportunities, life perspectives and future orientation. Participants acknowledged the supportive role of their family, friends, disabled peers and professionals throughout the experience. Professionals were criticised for assuming to be the experts when the expert knower is always the person who experiences the phenomenon. The relationship of participants with the non-disabled population featured around disablism, although improvement in this relationship was noted along the years. While this study has contributed to the gap within literature about the lived experiences of persons with acquired impairments, further phenomenologically-oriented emancipatory research is required, particularly focusing on youth. Public spaces need to embrace and highlight the authentic disability experience as a different mode of being-in-the-world. Findings also indicate that services need to adopt a bottom-up approach to give primacy to the expert knower.