“My Story is Not a Pink Story”: Enabling Care in a Research-Creation Practice with Parents of a Disabled Child in Inclusive Trajectories

ABSTRACT

With growing attention to including parents and eliciting their voices in the inclusive journey of their children, this paper discusses a process of research-creation. With examples of parents making podcasts about meaningful moments and feltness/felting, we explore parents’ positions and development of strategies in creating inclusive childhoods for their children with disabilities. Our investigation showed how storytelling workshops and the making of podcasts became a process of enabling care. It created a space where parents explored possibilities, actively shaped inclusion and functioned within interconnected networks. We discuss the way parents used the research-creation practice and their collective stories to (1) generate and apply present and future images of their child, (2) consciously invest in and appreciate connections, (3) interact with specific intentions, and (4) become activists and go public.

KEYWORDS:

• Children with a disability
• Parents' perspectives
• Enabling Care
• Feltness
• Research-Creation

Acknowledgements

The authors would like to acknowledge the contribution of Annemie and Mieke, two mothers who were closely engaged in this research-creation practice, as well as the entire steering group, Parents For Inclusion.

Disclosure Statement

No potential conflict of interest was reported by the author(s).

Notes

1 In Flemish culture, pink is associated with a carefree, joyous stage in life. The metaphor of “the pink cloud” refers to happiness when a baby is born. “Seeing life through rose-tinted glasses” means we picture life in a positive way.

2 Parents For Inclusion is an organisation by and for parents of a child with a disability that search their way towards inclusion in childcare, spare time, education and labor. Parents For Inclusion invests in peer-to-peer support, makes sure the voices of parents are heard in policy and creates “hotspots” of inclusion in Flanders.

3 Relaas is a volunteer organisation in Ghent that produces podcasts, based on lived experiences. Relaas believes everyone has stories to tell and can be coached to do so. Relaas records their podcasts in one take during a live “storytelling evening” with an intimate audience. https://www.relaas.be/.