Working with parents of children with a disability – a continuing dialogue

Friday, November 1, 2013
First author:
Schauwer E. de
Symposium:
Family & Disability Issues
Type:
Oral
Organisations

Centre on Disability Studies and Inclusive Education, Ghent University, Ghent, Belgium

All authors:

Elisabeth de Schauwer

Stream:
(Family) Quality of Life

Aim

While working with mothers and fathers of children with disabilities within the field of inclusive school projects for the last ten years we agree with Ryan and Runswick-Cole (2008) when they state that "there should be a greater engagement with and recognition of the role mothers (and fathers) play in negotiating disability issues" (p.199).

Ferguson (2001) and Landsman (2002) claim that we need to give attention to stories of mothers and fathers of children with a label in order to oppose to ‘old’ professional interpretations of families (Ferguson, 379-384) - like the ‘neurotic parent’, the ‘suffering parent’, the ‘dysfunctional parent’ or the ‘powerless parent’- or ‘new’ interpretations that position reactions and strategies of parents as constraints within their children’s lives, limiting their children’s opportunities and aspirations (Ryan and Runswick-Cole, 2008).

Methods

The metaphors for this article were gathered by using the 'key incidents' method (Emerson, 2004). Key incidents are events or observations that help to open up significant, often complex lines of conceptual development (Emerson, 2004, p.456). It is a research strategy that is coupled to ethnography from the actual experience of many ethnographers that their analyses were strongly shaped by particularly telling or revealing incidents or events that they observed and recorded (Emerson, 2004, p.459). This 'interest' is not a full-blown, clearly articulated theoretical claim, but a more intuitive, theoretically sensitive conviction that something intriguing has just taken place. These key incidents are helpful for a naturalistic analysis that is necessarily open-ended and emergent, tied to and deriving from specific pieces of what has been seen, heard and recorded (Emerson, 2004, p.458). It helps moving back and forth between observations (here: images and metaphors) and theory (here: about parenting and children with disabilities and about power mechanisms between professionals and parents).

Results

We worked with: the traveler, the warrior, the builder of bridges, the discoverer, the trainer/teacher, the in-betweener and the manager. We will position these metaphors as tools parents are using in their confrontation with normalising discourses of disability and education.

Conclusions

In this sense mothers and fathers of children with special needs can be seen as ‘parents on the margin’ from whom we can learn a lot about parenting in general. We move like Campbell (2009) is suggesting from a focus on disability to a focus on the effects of  internalisation of ableism.

First and foremost we want to stress that we do not want to judge the value of any of the metaphors. It is not about the right or wrong choices made by fathers/mothers here, but about attitudes and choices that are needed to make it possible for the fathers/mothers ‘to live through another day’. Together with Read (2000) and Fisher and Goodley (2007) we claim that the decisions parents are making for their children should get more appreciation (and should be seen as more than just as a collection of day-to-day pragmatic choices) due to the fact that the choices and decisions are grounded in and responsive to the complexities of the context. In that sense the metaphors we will present can be situated as a meta level parents present in their continuing process of reflection on their living together with their children with disabilities.

References

Campbell, F.K. (2009). Contours of Ableism. The production of Disability and Abledness. Basingstoke: Palgrave Mac Millan.

Emerson, R.E. (2004). Working with ‘Key Incidents’. In C. Seale, G. Gobo, J. Gubrium & D. Silverman (Eds.), Qualitative Research Practice (pp. 457-472). London: Sage.

Ferguson, P.M. (2001). Mapping the family: Narrative patterns in family portrayals of disability. In G. Albrecht, K.D. Seelman & M. Bury (Eds) Handbook of Disability Studies (pp. 373-395). Thousand Oaks, CA: Sage Publications.

Fisher, P. and Goodley, D. (2007). The linear medical model of disability: mothers of disabled babies resist with counter-narratives. Sociology of Health & Illness, vol. 29, issue 1, pp. 66-81.

Landsman, G. (2002). Emplotting children's lives: developmental delay vs disability. Social Science & Medicine, vol 56, issue 9, pp. 1947-1960.

Mortier, K., De Schauwer, E., Van de Putte, I., & Van Hove, G. (2010). Inclusief onderwijs in de praktijk. Antwerpen: Garant.

Read, J. (2000) Disability, the Family and Society. Listening to Mothers. Buckingham UK: Open University Press.

Ryan S., Runswick-Cole K.A. (2008). Repositioning Mothers: Mothers, Disabled Children and Disability Studies. Disability and Society, vol.23, no.3, pp.199-210.