1. 1 She is the skipper but...: Fathers voices on disability in their family and the value of formal and informal support Dóra S. Bjarnason: the NNDR Conference in Gothenburg 10th to 12th of May 2007

2. 2 The main study began in 2005: 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 1974-2005. 1974-2005 is the time when the legal framework and relevant service systems were put in place or adapted to accomodate disabled people and their families. This is a time of great changes both in the Icelandic society and in it’s welfare policy.

3. 3 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 30 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.

4. 4 This paper focuses on the fathers experiences and perspectives.

5. 5 Questions How do fathers of disabled Icelandic children born between 1974 -2005 experience disability in their families? 1.How do the fathers perceive available support? 2. Who supports the fathers? 3. Have the changes in formal support and social policy affected their perception? 4. How do the fathers experience their tasks related to family and work? – Fathers roles?

6. 6 Social constructionism I am interested in the “meaning making” in the face of change - including changing policy and practice. Goodley (2007) argues for disability research undrestanding parents and their disabled children as deconstructing or (re)deterritorializing the area ofs of policy, politics, theory and activism. - as rhizomatic, captured as lines of flight which are always becomming.... He coined the word “becomming parents”... Words: Support – formal and informal Gender roles Families Theoretical perspectives But... I am also a theoretical flirt

7. 7 What is a family? Family is a process of interactions and activities between persons who consider themselves as belonging to a family

8. 8 Methods Method: Qualitative Sample: Purposefull sampling – 60-65 families (120 interviews max) Data sources: interviews with one or both parents of disabled children and youth, interviews with 10-12 professionals, focus group interviews with staff at four local bureaues that provide disabled people and their families with services/ or coordinate services, and document analysis. For this paper I use interviews with 16 fathers (32 mothers).

9. 9 Findings Mothers deal mostly with systems, service staff and professionals and take on much of the caregiving role for the disabled child and the family. Support, both formal support and informal support is directed at mothers and provided largely by females. Mothers appear somewhat more focused on the child’s diagnostic labels than are the fathers. All the parents expressed love and pride in their disabled children.

10. 10 Findings Fathers 1.Most fathers support mothers in their struggle for the childs’ rights, and in finding, maintaining or changing services, even if they do not always fully agree with the mother’s definition of the child’s needs. 2. Fathers take on a “viscosious role”: - in the home by providing care to the disabled child and to other family members, by listening to the mothers, and by doing practical work (some housework and childcare, “taxidriving”, house- and car maintenance and house alterations) - by attending certain meetings with professionals – as the listening eye, as negotiators, asking “the hard questions”, or even to add force to the mother’s arguments and demanding answeres.

11. 11 3. Many fathers feel uncomfortable in the mostly female service systems. - Those fathers feel that they are not heard, not spoken to, their questions left unanswered and even ignored in the parent professional encounter. - Those fathers prefer to get rellevant information provided by the most freequently encountered professionals such as teachers, therapists, doctors and social workers from the mothers. 4. Most of the fathers found it hard to combine working life and tasks as father/husband and tasks related to parent- professional encounters.

12. 12 5. Very few of the fathers reported that they had trusted male friends with whom they could talk about private matters. Those who said that they had been supported by male friends or mates mentioned practical support such as being given flexibility at work to take time off when their disabled child or family needed help. Friends would also volunteer help to build ramps, mend cars etc. 6. None of the fathers reported that they felt that professionals aimed support at them as persons. 7. Almost 2/3rds of the fathers in the sample reported that they had little or no informal support from their family of origin.

13. 13 8. Most of the fathers reported that their only or most important source of personal support came from their partners: - Strong optimistic partnerships coincide with active parental responses vis a vi different service systems, and the belief that parents could affect change. - Strong but pessimistic/”realistic” partnerships coincide with reactive parental responses vis a vi different service systems, a belief in the systems/professionals duty to provide the special services, and moderate belief in parents capacity to affect change. - Weak partnerships coincised with passive acceptance or hopelessness/annomie vis a vi the service systems and professionals.

14. 14 9. A minority of the fathers stated that they supported their partners but that the support was not recipricated. 10. Fathers were less likely to focus on the diagnostic label given to their child than were the mothers. 11. Fathers were more likely than mothers to mention that they needed more time with their partners away from the children. 12. Most of the fathers expressed worries concerning money and their ability to provide adequately for their family and the disabled childs’s special needs.

15. 15 13. A minority of fathers expressed frustrations: Their disabled child was too difficult to handle. Their partners were too tirred or unwilling to engage in sex. Both partners in a family with three disabled children – wanted a divorce, but due to the tightly schedueled routeen ballancing work, childcare and disability service issues that was not possible. 14. The (younger) parents who obtained formal support for their child coordinated by a single named professional over time were more satisfied with the support than parents who did not have such service.

16. 16 Discussion How do fathers of disabled Icelandic children born between 1974 -2005 experience disability in their families? How do fathers of disabled children experience their roles and tasks related to family and work ? Who supports them? Have the changes in formal support and social policy affected their perception?

17. 17 Stress factors and coping mechanisms changed over time with changes in formal support and in society – but these also change as the family moves and changes. Informal support via the mothers´ social network varies according to geographic location and social class at each point in time, but weak support to fathers as persons remains simmilar. Formal support has changed significantlu over time impacting fathers and mothers roles in different ways. Parental satisfaction with formal support to their child appears to have increased in the 1990´s in municipalities where the services are coordinated by a single named professional over time.

18. 18 Fathers role is viscosious Most fathers do what they see as necessary to support their disabled child and family - at times transcending gender roles... Most fathers fill in the gaps and tasks left by the mothers and other family members – or service workers... Most fathers were directed by the mothers, but also supported by them...

19. 19 The “becomming father” as rhizomatic ? Bighead Atractylodes Rhizome “Parents are rhizomatic. They shift, forever move, along non-hierarchical networks which can be found in all aspects of life from politics to to thought and desire... The Rhizome has no beginning nor end., it is always in the middle, between things, interbeing, intermezzo (Lawlor, 1998, p.27” in D. Goodley 07). “There are exciting possibilities for rhizomes/parets. They “weave away” (Bogard, 1998) in their accounts of experiencing the health and social caring professions, their understandings of impairment and disability and their musings on parenting. However, there are also barriers. Rhizomes face blocks: Strata are unavoidable. Inevitably, parents encounter organizations that threaten to “restratify” everything, that reinstall the order of significance and propositions, the Subject, facist crystallisation....” And Goodley referes to parents as lines of flight