Journal on Developmental Disabilities

Self-advocacy by people with intellectual and/or developmental disabilities (IDD) has long been an important driver of collective empowerment and social recognition for the IDD movement. In recent years, new avenues to mobilization (including the increased involvement of self-advocates within formal advocacy groups and the growth of self-advocacy networks through social media and online communities) have led to more direct engagement by self-advocates in processes of policy consultation at the governmental level. Still, despite advancements in inclusion practices, there remain significant questions as to whose voices are foregrounded (i.e., are the most prominent), and to what extent policymakers meaningfully engage with self-advocates. By contrast, family advocates have historically had more opportunities than self-advocates to engage directly with political institutions. Family advocates have been instrumental both in advocacy group formation and pursuit of the legal enshrinement of IDD rights, paving the way for significant policy advances. The present paper assesses the commonalities and cleavages between self-advocacy and family advocacy, with specific attention to the historical evolution of IDD advocacy in Canada. The comparison is framed by addressing two primary objectives of IDD advocacy: i) promoting authentic individual and collective counter-narratives (i.e. the lived experiences of people with IDD that challenge dominant ableist assumptions) and ii) effecting policy change. We conclude by examining the interconnectivity of the two forms of advocacy and the potential of relational approaches based on interdependence and social connection of people with IDD and their close supports to overcome pervasive social and political institutional barriers.

Navigation encompasses a defined range of care concepts and practices, services and professions while also alluding to a broader set of care values, needs, and challenges associated with health inequities, social exclusion, and service fragmentation. In this article, we address some of these challenges by exploring navigation as an allegory that conveys the process of making one’s way through a complex web of care. We briefly trace the history of this concept and revisit its emergence and development in the context of health and social care. Drawing on a targeted review of the literature on this topic, we anchor our discussion in the case study of navigation programs for children with neurodisabilities and their families in Canada. In conclusion, we call for a social ecological approach to navigation as a matter of care and concern that has salient relational and political dimensions warranting additional research attention and policy development.

Background: Peer support for parents as a form of service and system navigation for families of children with neurodisabilities facilitates family resilience through their shared lived experience. However, there is little research available describing the experience of the key stakeholders engaged in this type of peer support. Methods: Through thematic analysis of qualitative interviews, the present case study examined the experience of three mothers of children with neurodisabilities engaged in a parent-to-parent peer support network. Results: Peers offer a unique form of support for navigating resources and experiences through shared lived experience. Our study revealed complex aspects of the emotional processes of peer support that have not previously been described. A unique finding was that the peers combined self-reflection and emotional expression in order to simultaneously provide empathy and bridge communication between a parent and service providers. Benefits associated with peer support included further development of knowledge and skills applicable to the peers’ own families; however, the emotional weight of the volunteer work was noted as a challenge for peer supporters. The network coordinator played a dual role, providing support to both the parent and peer. Our report on the structure and function of this peer support network contributes to a description of the current landscape of navigation support for families of children with disabilities. Conclusions: Findings suggest that peer support can play a complementary role to professional services in helping parents feel understood and access services that are meaningful to them. Peers can benefit from developing navigation skills; however, their role demands significant self-reflection and emotional investment. An additional layer of support for peers may contribute to the sustainability of peer support networks. Note: This article is supplemented by information about the Family Support Program of the Family Support Institute of British Columbia and a vignette based on the study findings that illustrates how the peer support network helped one mother to navigate resources and policies on behalf of her autistic teenaged daughter whose behaviour had become unmanageable.

This article focuses on a story of education, mothering, disability and madness, with two aims in mind: ● To reveal and to reflect upon the ways in which (m)others of dis/abled children are labelled as, and are made to feel, mad in their encounters with the psy-professions (education, psychology and psychiatry). ● To explore the potential of digital storytelling as a method of writing back against dominant oppressive narratives of education, mothering and disability. This paper is written by mothers of adult offspring with disabilities about our experiences of raising our children. We write about our experiences of making a film about being mothers. We explain that we have all been told by professionals that our beliefs about our children and what is best for them are mad—that is, they are unreasonable or not to be trusted. In the paper, we reject this view and argue that our voices should be listened to. We hope that this story telling process can reveal the ways in which discourses of madness are used to oppress (m)others of dis/abled children in encounters in education. We also hope that we can begin to build narratives of resistance so that madness no longer becomes the discourse of choice in encounters between (m)others and practitioners.

This arts-based submission reflects the perspectives of David, who identifies himself as a person living with an “understanding disability and mental health challenges”, his mom Shari, and Stephen, David’s formal caregiver in a “family type resource”. Our poem explores the idea of family as a concept and an experience. We created our poem through a combination of discussion and reflection on how our understanding of family has been shaped by our journey together. We pulled meaningful statements from recorded conversations, discussed our choices, and created our poem. Over the course of 5 years our connection has resulted in what we call a “found family”; bound by shared values and experiences in which hope has become possible. In creating this poem, we explore our experiences of “recovery to discovery”. Our poem reveals the possibilities for, and challenges in, creating a sense of belonging akin to family within a group home setting. We share, in our own words (using different fonts to identify our unique voices), our thoughts about key factors such as trust, comfort and belonging that reveal pathways to emotional and spiritual growth as individuals and together. We’ve got each other’s backs is a celebration of “found family”.