Perceptions experiences of psychoemotional disablism among disabled children

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

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

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

Method l l l 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 l 26 children aged between 7 and 15 l 15 boys and 11 girls l 9 -10 year olds were the largest group – 13 in total

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

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

Further threats l reaction from adults l reaction from children

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

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

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

Comment: mum of a boy aged 12 l ‘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 l For adult reactions: answer back (rudely!), show understanding and compassion l

Comment: 13 year old boy l ‘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 l 15 girls and 9 boys, aged 6 - 19 l 14 older than disabled child, 2 twins & 8 younger l two said to have impairments themselves

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

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

Concluding - key themes from the study l l l l 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