Perceptions & experiences of psycho-emotional disablism among disabled children & their siblings

Perceptions & experiences of psycho-emotional disablism among disabled children & their siblings Clare Connors and Kirsten Stalker Universities of Durham andStirling

Study aims • to explore disabled children’s understandings of disability • to explore how they negotiate disability in day to day lives • to examine their experiences of services and professionals • to examine siblings’ views of having a disabled brother or sister

Theoretical framework • Thomas’ (1999) social relational model of disability • barriers to doing & barriers to being • psycho-emotional disablism

Method • families recruited via schools & vol. orgs. • informed consent - leaflets & agreement forms • one to one guided conversations with 26 disabled children • semi-structured interviews with 38 parents and 24 siblings • study advisors

Sample: Disabled children • 26 children aged between 7 and 15 • 15 boys and 11 girls • 9-10 year olds were the largest group – 13 in total

Everyday life • positive picture • children focused on the ordinary • difficulties were concrete – troubles with maths, problems in spelling, falling out with friends • impairment seen as part of being ordinary

Exceptions • changes in school routine challenged the ordinary • disabled children forced to confront their difference • threat to their psycho emotional well being

Further threats • reaction from adults • reaction from children

Adults: • stared • talked down • made inappropriate comments • behaved inappropriately • showed overt sympathy

Comment: 14 year old boy • ‘Stuff them ….. I don’t care what they think ….. But, you know, I do. I do care. I pretend not to but I do.’

Children: • name called • bullied – teased, excluded, extorted money, were physically violent

Comment: mum of a boy aged 12 • ‘He was sitting day-dreaming and I says ‘Are you OK, Nicky?’ and he said ‘Am I a mongol mum?’ I said ‘No darling you’re not. You’re Nicky, that’s who you are’

Strategies • for bullying: tell a parent/teacher, confront the bullies • For adult reactions: answer back (rudely!), show understanding and compassion

Comment: 13 year old boy • ‘Oh I know they’re just trying to help, they don’t know. It’s because they don’t have any experience of being in a wheelchair.’

Sample characteristics: Sibs • 15 girls and 9 boys, aged 6 - 19 • 14 older than disabled child, 2 twins & 8 younger • two said to have impairments themselves

Sibs’ perceptions of psycho-emotional disablism • sibs as witnesses • sibs as protectors

Sibs’ experiences of psycho-emotional attacks on well-being • sibs as targets • sibs as perpetrators

Concluding - key themes from the study • The ‘ordinariness’ of disabled children's lives • pragmatic attitude to impairment • made aware of difference through others’ negative reactions • main experience of disability was through barriers to being • agency of disabled children • ‘ordinariness’ of sib relationships - but psycho-emotional disablism a factor • positive outlook overall

Perceptions & experiences of psycho-emotional disablism among disabled children & their siblings