Barbara E. Gibson

“This is my way”: reimagining disability, in/dependence and interconnectedness of persons and assistive technologies

Purpose: Postmodernism provides a radical alternative to the dominant discourses of Western societies that emphasize autonomy and independence. It suggests a reimagining of the relationship between the self and the body and the increasingly blurred boundaries between biology and machine. The purpose of this article is to explore in/dependence through a discussion of interconnectedness of persons and assistive technologies. Key messages: Drawing on postmodern theories, we discuss the interconnections inherent in disability experiences through the case example of Mimi, an adolescent girl with severe physical disabilities. We consider how Mimi, her assistive technologies and her parents can be viewed as assemblages of bodies/technologies/subjectivities that together achieve a set of practices. An examination of these various couplings suggests different understandings of disability that open up possibilities for multiple connections and reimagines dependencies as connectivities. Conclusions: Connectivity can be embraced to explore multiple ways of being-in-the-world for all persons and problematizes the goals of independence inherent in rehabilitation practices. Implications for Rehabilitation “Dependency” has a negative social connotation that is challenged by postmodern ideas of dynamic connectivity. Connectivity offers an alternative lens for conceptualizing relationships between disabled people, their technologies and caregivers. Connectivity suggests a rethinking the goals of independence inherent in rehabilitation practices.

Children and Youth With Disabilities Innovative Methods for Single Qualitative Interviews

There is a paucity of explicit literature outlining methods for single-interview studies with children, and almost none have focused on engaging children with disabilities. Drawing from a pilot study, we address these gaps by describing innovative techniques, strategies, and methods for engaging children and youth with disabilities in a single qualitative interview. In the study, we explored the beliefs, assumptions, and experiences of children and youth with cerebral palsy and their parents regarding the importance of walking. We describe three key aspects of our child-interview methodological approach: collaboration with parents, a toolkit of customizable interview techniques, and strategies to consider the power differential inherent in child–researcher interactions. Examples from our research illustrate what worked well and what was less successful. Researchers can optimize single interviews with children with disabilities by collaborating with family members and by preparing a toolkit of customizable interview techniques.

Critical approaches in physical therapy research: Investigating the symbolic value of walking

Research using a critical social science perspective is uncommon in physiotherapy (PT) despite its potential advantages for investigating questions other approaches cannot address. Critical approaches can be used to expose ideas and concepts that are dominant, given, or taken-for-granted in practice in order to reflect on how “things could be otherwise.” The purpose of this paper is to use an example of research examining the symbolic value of walking to outline the key features of critical research and its application to PT. The study drew from Pierre Bourdieus sociology of practice to illuminate how socially ingrained notions of normality and disability are reflected in rehabilitation practices and affect parents and children with cerebral palsy. Dominant social assumptions about the value of walking are shown to shape individual choices and contribute to parental feelings of angst and doubt, and negative self-identities for children. The example reveals how critical approaches to research can be used to reveal the socio-political dimension of rehabilitation practice and address important research questions that have been largely neglected.

Occupational Justice: Future Directions

In this paper, we build on the findings from our scoping review (Durocher, Rappolt & Gibson, 2013) of occupational justice and its associated concepts, which revealed considerable conceptual confusion and barriers to the usability and understanding of occupational justice. In this paper we expand on those findings to provide a critique and way forward by drawing from four distinct perspectives. First, we take the stance of the sceptical occupational scientist to examine the interrelationships between occupation and health. We then consider occupational justice from a practice standpoint, and then from the view of the broad health care provider community. Finally, we discuss how the field of bioethics may contribute to occupational justice.

Becoming men: Gender, disability, and transitioning to adulthood

Children and youth with progressive conditions are living longer, and there is increased interest in designing programs that will assist them with “transitioning” to adulthood. Almost none of the transitions research to date, however, has attended to the experiences of disabled boys in “becoming men,” nor has there been critical conceptual work problematizing notions of “normal” adulthood or theorizing the complex, diverse, and gendered experiences of transitioning. In this Canadian study, we investigated the intersectionality of gender, disability, and emerging adulthood with 15 young men with Duchenne muscular dystrophy. Participants created audio diaries and photographs that were explored in in-depth interviews. Using a Bourdieusian lens and Arthur Frank’s notion of the narrative habitus, we examined how participants re/negotiated identities in everyday practices. Our analysis suggested that disability, masculinities, and generational (life stage) identities intersected through “narratives of nondifference,” wherein participants worked to establish identities as typical “guys.” Within limited fields of school and work, participants distanced themselves from the label of “disabled” and discussed their successes and challenges in terms of normative developmental trajectories. We suggest that the pursuit of “normal” is reproduced and reinforced in health and social programs and closes off other narratives and possibilities.

Critical Reflections on the Physiotherapy Profession in Canada

A rethinking of scope of practice, patient access, accountability and payment is coming to bear on healthcare systems around the world . . . We must be ready to meet these changes and effect a positive outcome for our patients and our profession. —Michel Landry, President, Canadian Physiotherapy Association (2007–2009)1 Physiotherapists are faced with a number of unprecedented opportunities and challenges that require new ways of thinking about and practising physiotherapy. Significant among these is legislation recently tabled in Ontario that will enable physiotherapists to order tests such as x-rays and to diagnose patient conditions that are within the profession’s scope of practice. This expansion of scope follows closely on the heels of progressive changes to physiotherapy (PT) in Canada and other countries, including the move to entry-level master’s and doctoral training programmes, increasing privatization of PT services, licensure of alternative practitioners, and health workforce reform. Because of the current global economic crisis, federal budgets are being tightened; in Canada, this has implications for transfer payments to provinces and for alterations to the funding of PT services. Collectively, these changes signal profound shifts that are underway for PT as our profession continues to evolve in response to social, political, and economic influences. In order to respond, we argue, it is crucial for PT to engage in rigorous critical reflection on the theoretical basis of physiotherapy practice. As we outline below, critical reflection will assist us in further developing the foundations of PT, opening up new opportunities for growth and change in PT practice, research, and education.

An integrated methods study of the experiences of youth with severe disabilities in leisure activity settings: the importance of belonging, fun, and control and choice.

Abstract Purpose: The aim was to examine the leisure activity setting experiences of two groups of youth with severe disabilities – those with complex continuing care (CCC) needs and those who have little functional speech and communicate using augmentative and alternative communication (AAC). Method: Twelve youth took part in a mixed methods study, in which their experiences were ascertained using qualitative methods (observations, photo elicitation and interviews) and the measure of Self-Reported Experiences of Activity Settings (SEAS). Data integration occurred using a “following a thread” technique and case-by-case analysis. Results: The analysis revealed several highly valued aspects of leisure activity setting experiences for youth, including engagement with others, enjoying the moment, and control and choice in selection and participation in activity settings. Conclusions: The findings provide preliminary insights into the nature of optimal activity settings for youth with severe disabilities, and the mediators of these experiences. Compared to other youth, the data illustrate both the commonalities of experiences and differences in the ways in which these experiences are attained. Implications for research concern the utility of mixed methods approaches in understanding the complex nature of participation experiences. Implications for clinical practice concern the importance of not assuming the nature of youths’ experiences. Implications for Rehabilitation Service providers can lose sight of the importance of broader concepts of belonging, fun, and control and choice when providing interventions that focus on “participating” in an “activity” to build specific skills. In addition to the skill-based outcomes for youth with disabilities that are valued by the rehabilitation system, we suggest that consideration needs to be given to other types of outcomes that matter to youth, such as participating in a leisure activity for the sake of belonging or having fun. It is important not to assume that youth with severe disabilities are not enjoying their participation or are not benefiting from their leisure experiences. It is important not to “over-therapize” youth with disabilities and promote a balanced approach to therapy and leisure participation, by discussing with youth and families the beneficial developmental outcomes that can accrue from leisure activities.

Disability, Technology, and Place: Social and Ethical Implications of Long-Term Dependency on Medical Devices

Medical technologies and assistive devices such as ventilators and power wheelchairs are designed to sustain life and/or improve functionality but they can also contribute to stigmatization and social exclusion. In this paper, drawing from a study of ten men with Duchenne muscular dystrophy, we explore the complex social processes that mediate the lives of persons who are dependent on multiple medical and assistive technologies. In doing so we consider the embodied and emplaced nature of disability and how life is lived through bodies coupled with technologies and experienced as ‘techno-body-subjects in situ’. Normative implications for theory and research, including bioethics research, are discussed.

Transitioning to adulthood with a progressive condition: best practice assumptions and individual experiences of young men with Duchenne muscular dystrophy

Abstract Purpose: Youth with progressive conditions are living longer, and there is increased health care focus on assisting them with “transitioning” to adult services and adult life. The purpose of this investigation was to examine key discourses and normative assumptions underpinning transitions best practices and how they are reflected in the experiences of young men with Duchenne muscular dystrophy (DMD). Methods: Using a critical perspective, we qualitatively analyzed influential transitions best practice documents to identify their underpinning discursive assumptions. We compared these to the analysis of qualitative interviews and diary data from a study of 11 young men with DMD. Results: Transitions best practices are underpinned by discourses of developmental progression. They reproduce notions that associate successful transitions with becoming as independent as possible, approximating normal life trajectories, and planning for future adulthood. The accounts of youth with DMD both reflected and resisted these future-oriented discourses in creative ways that maintained positive personal identities. Conclusions: Normal developmental progression towards typical adult roles constitutes the generally accepted aims of transitions practices. Such aims may not be appropriate for all youth with disabilities. We suggest that alternative understandings of the life course and approaches to care need to be considered alongside dominant practices. Implications for Rehabilitation Children and youth with progressive conditions, such as DMD, are living longer and there is increased interest in designing programs that will assist them with “transitioning” to adulthood. Transitions best practices reflect dominant social values and assumptions about what constitutes a successful adulthood, embedded in goals such as independent living, self-management and obtaining work. Rehabilitation professionals should be aware of both positive (e.g. feelings of achievement) and negative (e.g. anxiety about the future) consequences of transitions practices that emphasize normal social developmental trajectories and milestones. Discussions with youth should offer multiple possibilities for living a good life in the present and provide support to address negative feelings and the progressive effects of DMD.

Parallels and problems of normalization in rehabilitation and universal design: enabling connectivities

Abstract Purpose: Universal design (UD) is oriented to creating products, buildings, outdoor spaces and services for use by all people to the fullest extent possible according to principles of enabling equal citizenship. Nevertheless its theoretical basis has been under-explored, a critique that has also been leveled at rehabilitation. This commentary explores parallels between UD and dominant rehabilitation discourses that risk privileging or discrediting particular ways of being and doing. Methods: Commentary. Results: Drawing from examples that explore the intersection of bodies, places and technologies with disabled people, I examined how practices of normalization risk reproducing the universalized body and legitimated forms of mobility, and in so doing perpetuates the “othering” of difference. To address these limitations, I explored the postmodern notion of multiple creative “assemblages” that are continually made and broken over time and space. Assemblages resist normalization tendencies by acknowledging and fostering multiple productive dependencies between human and non-human elements that include diverse bodies, not just those labeled disabled. Conclusion: In exploring the potential of enhancing creative assemblages and multiple dependencies, space opens up in UD and rehabilitation for acknowledging, developing, and promoting a multiplicity of bodily forms and modes of mobility. Implications for Rehabilitation Universal design and rehabilitation both risk perpetuating particular ideas about what disabled people should be, do, and value, that privilege a limited range of particular bodily forms. The notion of “assemblages” provides a conceptual tool for rethinking negative views of dependence and taken for granted independence goals. In exploring the potential of enhancing various dependencies, space opens up for reconsidering disability, mobility and multiple ways of “doing-in-the-world”.