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Compared to children without intellectual disability (ID), children with ID are significantly more likely to experience fecal incontinence. Within the dearth of extant research about fecal incontinence, children with ID are often excluded from studies. Researchers of studies including children with ID often understand fecal incontinence as either a “normal” and involuntary diagnostic phenotype for children with ID or as a deliberate oppositional behaviour. In either case, the child is positioned as the focus of the problem. In this article we discuss how children with ID experience fecal incontinence within a context of disabling service barriers resulting from the children’s individualized method of communication and self-care support needs that further their social stigmatization. This concept emerged from a Foucauldian discourse analysis that we conducted with eight carers of children with ID in Ontario. The results that we have presented in this article only discuss the interrelated concepts of “fecal incontinence,” “needs, and “untouchable as a social consequence” that emerged from theme 1 of the full study. Future research is needed to explore the experience of children with ID and fecal incontinence from a holistic perspective and to inform professionals working with this population about the importance of providing person-centred interventions.

Children with intellectual disabilities (ID) experience a higher prevalence of dental disease, obesity, challenging behaviours, and mental health disorders compared to children without ID; and health and social service navigational barriers associated with unresolved health needs. The research literature has identified the types and implications of service navigational barriers experienced by children with ID and their carers , and the demographics of people vulnerable to them; however, the literature has not identified how ID is currently understood within social policy and by carers of children with ID. Using a Foucauldian discourse analysis, I explored how ID is understood and the subsequent materializations on service navigation trajectories for children with ID. I collected four governmental agency documents and conducted six interviews with eight carers of children with ID, between the ages of six to 14, residing in a rural Ontario area. I interpreted the dataset themes using Powers’ framework. I found three major findings: (1) ID is understood as an impaired identity, an experience of disabling barriers, and heterarchical difference; (2) children with ID participate in a standardized assessment-diagnostic-treatment process; (3) the hegemony of service providers to make decisions for children with ID contributes to tensions with carers, and unresolved needs of children with ID. Nurses should enhance collaboration with children with ID and their carers to deliver client-centred care.