The paradox of normalization through rehabilitation: growing up and growing older with cerebral palsy

Abstract

Purpose: To examine the experience of normalization through rehabilitation for persons growing up & growing older with lifelong physical impairment (cerebral palsy [CP]). Method: A qualitative methodology consisting of narrative inquiry informed by the Life Course Perspective. Multiple (3–4), in-depth interviews were completed with each participant in order to co-construct their life stories. Data were systematically compared for themes and categories, as well as the central plot that weaves the participants’ experiences together. Results: Nine community-dwelling individuals (three men; six women), aged 26–70, with mild to severe CP participated. Their common narrative involved intensive rehabilitation in childhood that focused on “normalizing” movement, particularly walking. In adolescence they were deemed to have achieved their functional potentials and “nothing further could be done”. After transitioning out of pediatric health services many start to lose the gains they achieved in rehabilitation (particularly around walking). In their 30’s and 40’s they begin to slow down and lose functional abilities but no longer have access to rehabilitation to help them manage their aging bodies. Conclusions: Many of the assumptions that underlie the organization and delivery of rehabilitation services for people with long term impairments may contribute to difficulties encountered in adulthood and old age by focusing on normalizing physical function at the expense of learning to manage their bodies across the life course.

Implications for Rehabilitation

• The way that rehabilitation services are organized and delivered for people with lifelong impairments needs to be re-considered.

• Frontloading rehabilitation in childhood does not meet the long term needs of children growing up and growing older with physical impairments. As they grow up and grow older, they lose many of the gains they achieved in rehabilitation yet they have nowhere to turn to receive rehabilitation for their aging bodies.

• The focus on normalizing function in childhood may only serve to emphasize the child’s lack of able-bodiedness to the detriment of their sense of self and wellbeing

Keywords::

• Aging with disability
• cerebral palsy (CP)
• normalization
• rehabilitation
• the Life Course Perspective

Acknowledgments

This study was undertaken for Laura R. Moll’s Doctoral Dissertation.

Declaration of Interest: This study was funded by the University of Toronto (2004–2005), Toronto Rehabilitation Institute TRI Student Scholarship Fund (2005–2006), and TD Grants in Medical Excellence (2006–2011).