The participation of disabled children and their families in British Society: Some community realities

1. The participation of disabled children and their families in British Society: Some community realities Dan Goodley Katherine Runswick-Cole d.goodley@mmu.ac.ukK.Runswick-Cole@mmu.ac.uk ODI evidence day

2. Sources • initial findings from our current Economic and Social Research Council funded study ‘Does Every Child Matter, Post-Blair? The interconnections of disabled childhoods (http://www.rihsc.mmu.ac.uk/postblairproject/); • findings from a previous ESRC project Parents, Professionals and Disabled Babies: Identifying Enabling Care (http://www.shef.ac.uk/disabledbabies); • a book that reported on the findings of the Enabling Care project (McLaughlin et al, 2008). ODI evidence day

3. Methods • the studies involve over 60 families in the England; • draw on qualitative interviews, observations, stories and accounts; • marginalisation and exclusion. ODI evidence day

4. Questions • What is community? • What types of communities are families involved in making? • To what extent do disabled children and their families experience community exile? • Does every child matter in British society? • How can we work together to promote inclusive communities? ODI evidence day

5. What is community? ODI evidence day

6. Communities • Complex, shifting phenomenon • Belonging • A physical/spatial location • Being a citizen ODI evidence day

7. What types of communities are families involved in making? ODI evidence day

8. Types of Communities • Home, education, work and leisure, family, friends and (inter)national contexts • Resources • Conflict • Exclusion ODI evidence day

9. To what extent do disabled children and their families experience ‘community exile’? ODI evidence day

10. Communities, exile and families My mother sent us a wedding invitation with my [disabled] son’s name left off. I said ‘it is all of us, or none of us’. We didn’t go to the wedding and we haven’t talked much since. (Stacey, IV 1) My brother has a birthday for his daughter in July and I’m supposed to be her godmother but they didn’t invite us along and I think it’s because of Jack’s condition because they don’t like it. (Jane, IV1) ODI evidence day

11. Communities, exile and friendships • Friendship groups • Challenge • New allies ODI evidence day

12. Communities, exile and professionals • 124 professionals • Inflexibility • Restricted employment ODI evidence day

13. Community exile: schools I changed her playgroup because the playgroup she was at, they were quite precious over her, even though it was mixed ability, they did take special needs kids, they were kind of shooing all the other kids away from her. (Elizabeth, IV) ODI evidence day

14. Nurseries, schools and exile • Birthday parties • Petitions • Exclusive groups • Peers ODI evidence day

15. Exclusion in the wider community • The aisles and the things and then you get an aisle big enough and then they’ve stuck a bargain bin in the middle of it . And on top of that you’ve got people looking, well I don’t mind the looking it is the staring and you’ve got people staring and then there’s children saying ‘what’s that big boy doing in a buggy, mummy?” ‘I don’t know, darling’… well let’s not confront it, it is too awful. And I feel like saying, well that’s my life, you know. • Sally (IV 1) ODI evidence day

16. ‘More normal than normal people’ (Bogdan and Taylor, 1994; Booth and Booth, 1994) One volunteer worker told us that it was sometimes difficult for the PAs to withdraw from clubs when young people no longer needed support. She also felt that the young people she supported had to be ‘better behaved’, or perform better, than other young people at the youth club in order to be able to continue to attend. (Notes from a focus group meeting with practitioners) ODI evidence day

17. Leisure • Parents of disabled children were often asked to stay with their child at clubs and activities. • ‘Excruciating’ • Disability Discrimination Act (HMSO, 1995). ODI evidence day

18. Segregated Leisure • Segregated leisure • Dangers • Problems of special education ODI evidence day

19. Does every child matter in British life? • be healthy • stay safe • enjoy and achieve • make a positive contribution • achieve economic well-being ODI evidence day

20. Disability and impairment • The Disability Discrimination Act (DDA) (HMSO, 1995) defines a disabled person as someone who has a physical or mental impairment that has a substantial and long-term adverse effect on his or her ability to carry out normal day-to-day activities. • The ‘problem’ is clearly located within the body or mind of the disabled child. • Limiting conception ODI evidence day

21. Deficit models and community exclusion • Social policy and disability/impairment ODI evidence day

22. Pervasive developmentalism • Notions of developing normally. • Lamb Inquiry (2009) reveals that disabled children have not benefited from scrutiny of marketised system as care rather than attainment is the focus of OfSTED inspections for children with SEN. ODI evidence day

23. How can we work together to promote inclusive communities? ODI evidence day

24. Inclusive schools • ‘Quirky’ – ‘quirky kids and quirky staff’ (SENCO) • Special was made general – ‘everyone here has an Individual Education Plan’ (SENCO) • Parents of non-disabled children were supportive. • Single Equality Scheme and anticipatory duties were in place • Governing bodies understood and were supportive of inclusion alongside their other commitments eg: raising attainment. ODI evidence day

25. Creativity • Oily Cart (www.oilycart.org.uk; Runswick-Cole and Goodley, 2009)) • Creative teaching • Creative Leisure opportunities • ‘Specific’ (eg: autism) leisure opportunities were just good inclusive leisure opportunities (Goodley and Runswick-Cole, under review) • Taking risks eg: Brownie groups taking responsibility for care. ODI evidence day

26. Changing policy/practice?One example: Disability Living Allowance • Parents/carers are forced to measure their child against an under articulated norm – how much more help ‘than other children of the same age who do not have their illness or disability’. • Describing their children through a medicalised, deficit driven language causes parents/carers distress ODI evidence day

27. Changing policy/practice? • Professional language (Ellis, 2007) • Absence of social and environmental factors • Exclusionary process ODI evidence day

28. An alternative approach – drawing on Oliver (1990) • Re-framing • Remove the requirement to measure child against under articulated ‘normal child’ (Goodley and Runswick-Cole, in preparation). • Include wider social and environmental factors in the form – ‘what barriers does your child face?’ • Frame the form within the context of the ECM agenda – ‘what support does your child need to meet the ECM outcomes?’ ODI evidence day

29. Closing remarks • Impairment/Disablement • Developmentalism • Psychological impact • Social and environmental factors ODI evidence day

30. References • Beresford et al 2008 • Bogdan, R. & Taylor, S.J. (1994). The social meaning of mental retardation: Two life stories. New York: Teachers College Press. • Booth, T. and Booth, W. (1994) Parenting Under Pressure: Mothers and Fathers with Learning Difficultie., Buckingham: Open University Press. • Ellis 2007 • Goodley, D. and Runswick-Cole, K. (in preparation) ‘”We murder to dissect”: the disablist impact of claiming Disability Living Allowance for disabled children Critical Social Policy • Goodley, D. and Runswick-Cole, K. (submitted) Queering the norm: Dis/abled child, family and normalcy. Subjectivity: International Journal of Critical Psychology. • HMSO (1995) Disability Discrimination Act. London: HMSO. • Kagan et al 1998 • Lamb Inguiry 2009 • McLaughlin, J., Goodley, D., Clavering, E. and Fisher, P. (2008) Families Raising Disabled Children: Enabling Care and Social Justice. Basingstoke: Palgrave MacMillan. • Michalko, R. (2002) The Difference Disability Makes, Philadelphia: Temple University Press. • Oliver, M. (1990) The Politics of Disablement, Basingstoke: Palgrave MacMillan • Runswick-Cole, K. and Goodley, D. (2009) ‘Better than a spitfire ride!’ – an Evaluation of Something in the Air? Oily Cart’s special school residencies and production for Manchester International Festival, July 2009. Available online at: www.rihsc.mmu.ac.uk/postblairproject/. • Runswick-Cole, K. and Goodley, D. (under review) ‘Doing Childhood? Play, leisure and dis/abled childhoods’ Children and Society ODI evidence day