Professor Dóra S. Bjarnason University of Iceland School of Education Faculty of Education Studies

1. Parent voices: Parents of four age groups of disabled children (borne from 1974-2007) reconstruct their self identities through their engagement with social capital Professor Dóra S. Bjarnason University of Iceland School of Education Faculty of Education Studies dsb@hi.is http://wp.khi.is/dora

2. Background: Iceland: small population, large island, high standard of living, Nordic type welfare society. Economic vulnerability. ECER - Gothenburg. Sept. 2008

3. The study 2005/2006-2008 The focus is on parents’ perspectives of informal and formal support due to a child’s disability – over time. Their children labelled with disabilities are born between 1974-2007. That is the time when the legal framework and relevant service systems were put in place to accomodate disabled people and their families. This is also a time of great changes both in the Icelandic society and in it’s welfare policy. ECER - Gothenburg. Sept. 2008

4. The goales of the larger study are: – Describe and explore the experience of parents of disabled children and youth of giving birth to and bringing up a disabled child – and their experience of different formal and informal support to the child and the family. – Compare the experience of parents of disabled children born over a 35 year period; a period of significant changes in law and services aimed at families and disabled children. – Explore whether and in what way there is a connection between support and decissions and choices that parents make on their disabled children’s behalf e.g. regarding their placement in segregated or inclusive settings. – Explore positive and negative implications of increased specialisation and increase in formal services directed towards disabled children and their families,for their full and active participation in society and identify in what way specialised and generic support can empower disabled people and their families. ECER - Gothenburg. Sept. 2008

5. The focus is on on parents voices over time: their perspectives and experiences of informal support and the impact of the parents’ social capitals for their sense of self identity and lived every day experiences. ECER - Gothenburg. Sept. 2008

6. Questions What has changed in the parents experience of having and caring for a disabled child in the family over time? Is it easier or just different to have a disabled child now? What common elements come through the stories? What differences come through in the stories over time? What are the lessons learnt? ECER - Gothenburg. Sept. 2008

7. Theoretical Perspectives Social constructionism I am interested in the “meaning making” in the face of change - including changing policy and practice. I also evoke, symbolic interactionism (Mead) and social capital Theories.(Bourdieu, Coleman and Putnam, Allan) Words: Support – formal and informal Families Self/self identity Anomie, disorientation Bonding-, bridging and linking social capitals ECER - Gothenburg. Sept. 2008

8. What is a family? Family is a process of interactions and activities between persons who consider themselves as belonging to a family

9. Methods Method: Qualitative Sample: Purposefull sampling – 65 families Data sources: interviews with one or both parents of disabled children and youth, interviews with 12 professionals, focus group interviews with staff at four local bureauesthat provide disabled people and their families with services/or coordinate services,and document analysis. For this paper I use interviews with 62 mothers and 43 fathers and 3 couples interviewed together. ECER - Gothenburg. Sept. 2008

10. Findings • Story told by a mother of • a child with downs • syndrome • borne in 1965 • Voices: • Father of Gylfi (2 years old ) with Downs Syndrome • I sensed it in advance – saw it right there at the birth when • they rushed him out. I thought “I have no time to be depressed • and scared of the future. Right now I must stand strong and – • well-, support my woman through this”… You understand, • the first hours after his birth she didn’t dare to look at him. ECER - Gothenburg. Sept. 2008

11. Yes, she was in a shock. I had seen him… been with him – and he was just a lovely baby boy…I got very annoyed when mother, and my mother and sister in law came … they were crying. I took them aside and told them to stop this. That we had just had a child, not lost one… … within a few hours after the birth we began to get good news. I looked at the down’s Webb and I phoned a man I know from fishing. He has a teenaged son with downs’… Our families and friends rallied around us, the doctors and Jóna, the service person, were great. …Our two sons are fantastic …We are over the moon and getting married next week… Everybody will be there. ECER - Gothenburg. Sept. 2008

12. Mother of Brák (3 years old) with autism and probably more labels. M: She is beautiful and charming…she does not disturb anyone … until of course now when it is emerging that she is different.. It was a very difficult birth …I was worried but nobody paid any attention …My worries were simply dismissed…”THERE, THERE My DEAR, Nothing IS WRONG WITH THIS CHILD”, still echoes' in my head…But I knew better, was always trying to get people to see – both family and the health system… Even my husband was in a denial… ECER - Gothenburg. Sept. 2008

13. D: Could you talk to anyone about this? M. No, well my husband, but I am not sure if he listened…? He pushed this away, said the baby was all right… My family kept asking if she was NOT OK, others were simply neutral. M: I jumped the queue when she was 18 months through my connections…No effort, no gain…each day in waiting is excruciating… D: Who helps..? M. Mmm, the family has been passive. Mother died last year, my father does not really accept…he does not participate. My siblings? Well they know, but only my little sister gives some help but she lives far away, we have a cleaning lady and a hired help who comes around mealtimes...My parents in law occasionally invite our older child for Sunday drives. They are often stand by driving and fetching…. ECER - Gothenburg. Sept. 2008

14. M: Most people do not understand. I have lost a few friends. That is probably inevitable...I no longer have the energy to work on the friendships – I have not herd from some friends for over a year… I found that strange…I am a member of a sewing club, but… I met a woman on the (town-) square the other day, we are no friends, but we talk allot when we meet. She has an autistic daughter… F: You do not discuss this with others… I only talked to my wife. I did not belief… but when the diagnosis started to come in, she took this on like a doctoral thesis…I was maybe not ready to take that road but.. I felt I was caught in a tornado, trying to do my best on all fronts...Sometimes I have wanted to…But there is no simple solution. You do not run away. You cannot run away from yourself…We deal with this, things are OK. I am not complaining ECER - Gothenburg. Sept. 2008

15. Parents of Birna (aged 13) with spinal muscular athropi M: we suspected for over three years…the process is slow, but of course many people were beginning to realise… We did not talk about this with anyone and obviously no one talked about their suspicions with us. F: Yes, we got the bad news in small doses. That may have saved us. M: Yea. There are tree other families… we meet and talk… and learn from each other…dealing with the system is very complex… D: Who has supported you? M: We have a good family, and good children. They have always been ready to help. F: And we have good friends, my old boy scout group and… ECER - Gothenburg. Sept. 2008

16. M: … for a while I found that we isolated ourselves somewhat. F: Yes, I am not saying that friends leave, but they do disappear because you close the door yourself . I think we still do that a bit… It happens over time. You do not have time, you do not make the effort, you have tasks to do and you do not fully trust others – you do it yourself. There were times when we were extremely Isolated from these friends – but then things opened up and we have strong friendship bonds now. M. Well it was not just this. At that time in life people are very busy building their homes and rearing their own families…and my mother helps and his sister… ECER - Gothenburg. Sept. 2008

17. Mother of John (19 years old) with CP M: A series of bad mistakes at the birth caused his disability [she explained that in details]. It emerged gradually over the first year, that something was very wrong. We experienced some tough and ugly times in dealing with the hospital system…There you learnt that a life is worthless when it is seen threaten professional esteem and professionals…We took it all the way and won… but it hurt. This was a long time ago, now I think things have improved… M: We were very alone in all this for years…nobody helped me or supported me. …. I am prepared to pay for what we need, and I do not give in, go to the top when I have too. I play it by ear. That way we have managed to get the services we needed… But my life has evolved around this… ECER - Gothenburg. Sept. 2008

18. project…Helpers came into our home. Many were great, but we even had to learn to quarrel in whispers [laughs]… this affects home life. D. What about your families? M. We have no families here. They are far away in the country. But I have girlfriends here whom I regard as my family. This is of course difficult, and we have of course lost friends when we asked for help, but they would or could not… That was real painful. It is also difficult that not everyone can tolerate having someone closely related to them who is so limited [referring to herself and her needs for help]. One is limited, one gets very tired, One needs some kindness and consideration…My three best friends have been great… ECER - Gothenburg. Sept. 2008

19. Lessons: • Anomie – many parents experience the disintegration of their • self-identity at the birth or diagnosis of a child with disability, and • at critical junctures such as transition periods. • This affects peoples engagement with social capital, and most • importantly bonding social capital. The parents are vulnerable • and family members and friends uncertain/ clumsy or embracing. • The parents of the children borne in 1970’s and early 1980’s were • some what less likely to lose bonding capital than other parents. • Parents who lost access to much of their close network or if that • access became superficial (loss of trust) were more likely to • seek specialised/professional solutions for their child. ECER - Gothenburg. Sept. 2008

20. Fathers have much less access to bonding capital than mothers, • but more access to bridging and linking capital. • How parents work through the difficulties is related to: • If the child is expected to live or dye • Access to social capital especially bonding capital • Whether or not they have previous knowledge of disability – • or access such knowledge from other families. • Parents education and personal resources • Flow of information and short waiting lists / time • Access to necessary, sufficient and flexible services as time goes • by and the child’s and the family’s needs change. • Grandparents reaction is important for the maintenance or erosion • of bonding capital • Empowering engagement with social capitals, especially with • Bonding capital reduces the parents periods of stress and sorrow. • Access to bridging and linking capitals opens and maintains • access to appropriate services. ECER - Gothenburg. Sept. 2008

21. Not all parents go through an acute period or periods of stress • and sorrow. • Family life is centred around rhythms and routines of all the • family members, joint and separate activities, habits, beliefs and values. • Sunny stories and family memories and myths are part of the glue that • keeps families together. • Peoples expectations, quality of life and access to services have • changed in the 35 years under study, but the importance of bonding • capital has not changed. • Parents access to bridging and linking capitals has changed, become • more complex and more dependent upon education and social • status/class than 35 years ago. • Capitals can be built – trust, recognition, mutuality and flexibility • are the building blocks as families move and change. ECER - Gothenburg. Sept. 2008

22. Is it easier or just different to have a disabled child now? ??? ECER - Gothenburg. Sept. 2008