When Good Intentions Backfire: University Research Ethics Review and the Intimate Lives of People Labeled with Intellectual Disabilities

We critically discuss how practices of ethical governance through university research ethics committees can contribute to the silencing of people labeled with intellectual disabilities through the reproduction of discourses of vulnerability and protectionism. In addition, disabling assumptions of (in)ability and reductive bio-medical understandings of labeled people as a homogeneous group can create concern that such research is "too risky," and perhaps not valuable enough to outweigh potential risks. Combined, these practices deem people "too vulnerable" or "too naïve," and thus, unable to make decisions for themselves about participating in research without putting themselves and the researcher(s) at risk. In this article, we draw on insights gained from our experiences undergoing ethics review for projects focused on the personal and intimate lives of people with intellectual disabilities. We proffer that such ethical governance, though well-intentioned (i.e., to protect participants and researchers), limits not only possibilities for research that would otherwise prioritize the perspectives and agency of people with intellectual disabilities but also how researchers are "allowed" to engage with them in research

Critiquing representations of intellectual disability in occupation-based literature

Background: Within and beyond occupation-based scholarship, concerns abound regarding the pervasiveness of discourses that promote a negative, deficit-based view of intellectual disability and associated consequences for disabled people’s lives. Such representations risk reducing the complexities of human doing and being and can limit the occupational possibilities of this group. Yet, there is a lack of critically reflexive research exploring how disability is discursively constructed in occupation-based literature. Aims/Objectives: This paper critically analyses representations of intellectual disability within occupation-based literature. It considers the influence of such representations on the occupational possibilities of people labelled intellectually disabled. Methods: This review employed a critical interpretive synthesis of 21 peer-reviewed articles from occupational therapy and occupational science that focused on intellectual disability. Results: Three analytic threads were identified as contributing to how intellectual disability was represented across the reviewed literature: habilitating expected doings, becoming productive citizens, and activated, but insufficient. Conclusion & significance: Occupation-based discourses have powerful influence within society, particularly within occupational therapy, regarding understandings of intellectual disability and how these shape occupational possibilities for persons labelled intellectually disabled. Drawing attention to taken-for-granted representations of intellectual disability is essential to promote transformative occupational therapy practice and enhance occupational possibilities for this population

'Some people are not allowed to love': intimate citizenship in the lives of people labelled with intellectual disabilities

Disability helps us think differently about the ‘ideal’ neoliberal-able citizen who may not equate to ideas of productive, sexual, ‘normal’. Intimate citizenship – our rights and access to intimacy – is often ignored by those working with people labelled with intellectual disabilities and in research. In this article, we discuss the outcome of a dialogue between self-advocates labelled with intellectual disabilities, academics, service providers, Aboriginal leaders, students and artists about intimate citizenship through love, intimate work and consumption

The Right or Responsibility of Inspection: Social Work, Photography, and People with Intellectual Disabilities

Abstract The act of knowing is a critical determinant of what is known, yet there are limits and potential violence inherent in all ways of knowing. Social workers have an ethical responsibility to understand our means of knowing and our knowledge claims – both shape the work we do. Conspicuously under-represented as creators of/commentators on how they are represented, people with intellectual disabilities have had little/no control over what or how they are known. These ethical and epistemological concerns were the focus of this arts-informed qualitative study. The purpose was an interrogative encounter with one way of knowing – how public photographic imagery of people with intellectual disabilities influences knowledge about them. It was concerned, however, to come to this knowledge through an inquiry into how labelled people would, themselves, interpret and respond to these representations, and how they might use photography to trouble disabling images and non-disabled (social work) knowing. Theoretically framed by a critical disability lens, the work was influenced, too, by Derrida’s essay on photography, “The Right of Inspection”. The other regarding aspect of the philosophy of Emmanuel Levinas, his concern with our ethical responsibility to the alterity of the Other, most powerfully informs the work. Four adults with intellectual disabilities accepted the invitation to participate in this project. First, they critically engaged with a selection of public photographic images. In a unique methodological turn, they then transformed the images to reflect their critique. Interpretive analysis of the critiques and transformations identified four thematic ideas. Participants’ critiques were insightful and profound; transformations provocative and disruptive. Challenging dominant assumptions – and demanding non-disabled others re-think intellectual disability and people so labeled – the critiques and transformations also respond to the social/political/ideological/psychological ramifications of photographic imagery on the lived experience of intellectual disability. Through the work, participants confront non-disabled responses to public photographs and to labeled people, challenging non-disabled others to question their knowledge, attitudes, and behaviours. The work also raises questions about research and people with intellectual disabilities: the possibilities for voice and empowerment through inclusive research strategies and visual methodologies, and the transformative potential of dialogic encounters between people with and without intellectual disabilities.Ph

Reimagining Parenting Possibilities: Towards Intimate Justice

At the heart of this paper is a collaboratively created script representing a line of analysis from the Reimagining Parenting Possibilities Project. The script is performed as a forum theatre scene used to disseminate findings from this ongoing research project. Forum theatre, an exemplar of Augusto Boal’s “theatre of the oppressed,” invites audience members into a scene, inventing through embodied performance and improvisation analyses and interventions in shared social dilemmas (Boal, 2006). The project rests upon our joint investments in exploring how the denial and containment of parenthood for people labeled with intellectual and developmental disabilities stems from enduring ableist views as to who is deemed “fit” to raise future citizens, and related efforts to erase disability. We introduce this work with a prologue – offering context for the ableist dynamic and intimate injustices that unfold in the scene. We also provide some background on how we developed the scene, attending to the democratizing and transformative potential of our methodology. Finally, by way of an epilogue, we sketch a number of questions about the scene’s potential to promote intimate and disability justice

Creating, Resisting or Neglecting Change: Exploring the Complexities of Accessible Education for Students with Disabilities

Recent teaching and learning scholarship has documented the importance of uncovering and removing barriers to learning experienced by students with disabilities (e.g., Cook, Rumrill, & Tankersley, 2009). At the same time, in Ontario, new legislation is making this issue especially pronounced. The Accessibility for Ontarians with Disabilities Act (AODA, 2005), mandates universal access for persons with disabilities, requiring the removal of barriers to their full participation in all aspects of society, including higher education. This article reports on the first phase of a larger project designed to collect qualitative data about the effects of the AODA legislation on the teaching and learning environment at one University. Building on previous work that investigates students with disabilities’ experiences of tertiary learning (e.g., Healey, Bradley, Fuller, & Hall, 2006), it reports on the results of semistructured interviews that explored the ways in which students with and without disabilities, instructors, administrators, and staff perceive the relative accessibility and inclusiveness of teaching and learning at this institution, with an eye to ultimately enhancing learning for all students. Results from this first phase suggest a number of areas in which both barriers to and facilitators of educational accessibility exist at the study University, including: attitudes; knowledge; disciplinary features; pedagogical choices; and, institutional practices. We suggest that these findings may be of relevance to others in different constituencies and contexts, and provide recommendations for enacting change related to teaching and learning accessibility and thereby improving the student learning experience. L’avancement récent des connaissances en enseignement et en apprentissage a permis de documenter l’importance de dévoiler et de surmonter les obstacles à l’apprentissage des étudiants ayant des incapacités (p. ex., Cook, Rumrill, & Tankersley, 2009). En même temps, en Ontario, une nouvelle loi rend ce problème particulièrement évident. La Loi de 2005 sur l’accessibilité pour les personnes handicapées de l’Ontario (LAPHO, 2005), rend obligatoire l’accès universel pour ces personnes, ce qui nécessite l’élimination des obstacles à leur pleine participation à tous les aspects de la société, y compris à l’éducation supérieure. Le présent article traite de la première phase d’un grand projet visant à recueillir des données qualitatives sur les effets de la LAPHO sur le milieu d’enseignement et d’apprentissage dans une université. Les auteurs s’inspirent des études antérieures auprès des étudiants handicapés afin d’étudier leur expérience de l’apprentissage dans un établissement d’enseignement supérieur (p. ex., Healey, Bradley, Fuller, & Hall, 2006). L’article rapporte les résultats d’entrevues semi-structurées concernant la perception qu’ont les étudiants handicapés, les autres étudiants, les professeurs, les administrateurs et le personnel de l’accessibilité relative et du caractère inclusif de l’enseignement et de l’apprentissage dans cet établissement. L’objectif est d’améliorer l’apprentissage de tous les étudiants. Les résultats de cette première phase révèlent plusieurs domaines où il existe à la fois des obstacles et des éléments facilitant l’accessibilité aux études dans l’université qui participe à la recherche : les attitudes, les connaissances; les caractéristiques de la discipline; les choix pédagogiques et les pratiques institutionnelles. Les auteurs suggèrent que ces résultats sont pertinents pour différents contextes et institutions. Ils formulent des recommandations afin de procéder à des changements liés à l’accessibilité à l’enseignement et à l’apprentissage et ainsi améliorer l’apprentissage des étudiants

What are you (un)doing with that story?

© The Author(s) 2017. This paper contributes to growing inter-disciplinary discussion on what and how arts-informed community-engaged research can add to critical engagements with social inequalities. It is based on workshops facilitated by an inter-disciplinary university research group with the Women’s Housing Planning Collaborative Advisory in Hamilton, a funded housing project and self-advocacy group in a mid-sized Canadian city. In theoretically informed and carefully crafted exercises, workshop participants performed stories they felt compelled to tell in order to secure resources and empathy from social service professionals. These performances made visible the draining nature and practical limitations of interactions between clients and social service professionals in which only particular affective postures and stories of need qualify clients as worthy of concern. The women then used first-person narrative and image theatre to evoke the worlds they are imagining for themselves and others in their advocacy work. Drawing on feminist, post-colonial, anthropological, and performance studies literature, we describe and analyze how the workshops methods of dramatic ‘play’ enable nuanced, powerful, and collectively energizing critical engagements with painful norms of social (mis)recognition