When they call me cripple: a group of South African adolescents with cerebral palsy attending a special needs school talk about being disabled

Abstract

Central to the experience of disability are social and political forces and discourses which position people in particular ways. Little is known about the experiences of individuals with disabilities living in low-income and middleincome countries. We investigate the lived experience of a group of South African adolescents with cerebral palsy. In-depth interviews were conducted with 15 adolescents with cerebral palsy. Data were analysed using interpretive phenomenological analysis. The participants position themselves between the medical and social models of disability, in a liminal space between 'normal' and 'disabled', but do not identify with either group. They describe a 'hierarchy of disability' and position themselves in-between more serious sensory impairments and less serious emotional and learning disabilities. Being disabled is associated with being taken care of, infantilised and being powerless. Consequently they aspire to achieve independence and autonomy, and face danger, which are seen as signifiers that they are not disabled. Points of interestWe describe how a group of South African adolescents with cerebral palsy experience being disabled. Participants make sense of their impairments within a medical model of disability and experience their bodies as 'abnormal'. Participants wish to have their bodies repaired and see the medical profession as having the power and expertise to heal them. Participants identify how they are enabled and supported by their school environment but recognise how the attitudes and assumptions of others act to disable them.

Still outsiders: The inclusion of disabled children and young people in physical education in England

“…Peer exclusion is difficult for this football enthusiast to take. In this account Stefan expresses awareness that he is socially excluded because physical limitations impact on perceptions of his ability and willingness to participate (Carter and Spencer 2006;Fitzgerald 2005;Bourke and Burgman 2010;Bantjes et al 2015). Paul, a 17-year-old boy describes similar experiences: People saw me as different in PE and I didn't get picked because they think I'm really bad at everything.…”

Cerebral palsy in African paediatric populations: A scoping review

“…The four qualitative studies included in this scoping review involve the same 15 adolescents living with CP attending a special needs school in Cape Town, South Africa (Table S2). [119][120][121][122] The themes revolved around the adolescents' perceptions of CP, 121 inclusion and participation in sports, 120,122 and factors for consideration when designing school sports programmes for children living with CP. 119 Participants' knowledge of CP ranged from a relatively accurate understanding of it being primarily a static neuromuscular condition to being unable to articulate how it is caused; 121 overall, these adolescents felt that non-disabled individuals were 'normal' and used them as the reference for their own experiences.…”

The Implementation of Special Needs School Programs as Resource Center for Inclusive Education in Indonesia

“…Inclusive education resource centers have obligations and responsibilities in helping smooth the learning process in schools (Kim, 2014). Therefore, special needs schools are obliged to do two things, namely monitoring and evaluation, monitoring, and evaluation conducted by the principal or coordinator of the source center to find out the development of program implementation in accordance with the plan or not and find the advantages and disadvantages of certain activities (Bantjes et al, 2015). The data obtained show that the implementation of monitoring and evaluation related to educational service activities for children with special needs and guidance / consultative activities for inclusive school teachers conducted by principals and resource center coordinators is classified as good.…”

“…Special needs schools had evolved before inclusive education was rolled out (Barnett et al, 2018). According to Pei and Sonoyama (2020), special needs schools are relatively better equipped to serve education for students with special needs because it has human resources and infrastructure and special facilities and devices that are very supportive (Bantjes et al, 2015). While regular schools as a startup of inclusive education organizers still have many limitations (Lancaster & Bain, 2021).…”