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

Clare Connors and Kirsten Stalker

Universities of Durham and Stirling

Study aimsStudy 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 frameworkTheoretical framework

Thomas’ (1999) social relational model of disability

barriers to doing & barriers to being

psycho-emotional disablism

MethodMethod

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 childrenSample: 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 lifeEveryday 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

ExceptionsExceptions

changes in school routine challenged the ordinary

disabled children forced to confront their difference

threat to their psycho emotional well being

Further threatsFurther threats

reaction from adults

reaction from children

Adults:Adults:

stared talked down made inappropriate comments behaved inappropriately showed overt sympathy

Comment: 14 year old boyComment: 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:Children:

name called

bullied – teased, excluded, extorted money, were physically violent

Comment: mum of a boy aged 12Comment: 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’

StrategiesStrategies

for bullying: tell a parent/teacher, confront the bullies

For adult reactions: answer back (rudely!), show understanding and compassion

Comment: 13 year old boyComment: 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: SibsSample 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 disablismSibs’ perceptions of psycho-emotional disablism

sibs as witnesses

sibs as protectors

Sibs’ experiences of psycho-emotional attacks on Sibs’ experiences of psycho-emotional attacks on well-being well-being

sibs as targets

sibs as perpetrators

Concluding - key themes from the studyConcluding - 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