Rehabilitation research is using a new lens for re-thinking patient care. Understanding the rehabilitation professional’s role – the concept being whether to “normalize” bodies that have a disability or to promote acceptance of diverse bodies and abilities – is a large part of the rehabilitation journey that patients and health professionals undertake. Looking at rehabilitation practices is an area of interest at the Bloorview Research Institute (BRI) at the Holland Bloorview Kids Rehabilitation Hospital, to establish areas where rehabilitation theory can be applied into practice and shift the focus from “fixing the body” to adapting the environment through participation and inclusion research.
BRI senior scientist Barbara Gibson, PhD, is a physical therapist and bioethicist who researches the social and ethical facets of disability and rehabilitation. Her research, which integrates theories and methods from bioethics, social sciences and health sciences, investigates the effects of healthcare on quality of life, community participation and social inclusion for youth with disabilities.
In her 2014 published study, entitled Parallels and problems of normalization in rehabilitation and universal design: enabling connectivities, Gibson reveals the challenges associated with Universal Design (UD) that impacts people with disabilities, as it informs ideas about what disabled people should be, do and value. She asserts that a narrow focus on enabling independence can in some instances exacerbate disability. Provocatively, Gibson suggests that a move away from normalization in body structures or social roles opens up opportunities for creative solutions.
As she notes in a recent paper entitled, ‘This is my way’: Reimagining disability, in/dependence, and interconnectedness of persons and assistive technologies, rehabilitation is often better suited to maximizing individual capacities by determining which ‘dependencies’ are most enabling. With this approach, the need for assistance from other people or assistive devices is not viewed as a failure of therapy but simply as another mode of functioning.
“When you think about rehabilitation, you also think about areas such as transitioning to adulthood, independent living and understanding relationships between mobility and social inclusion,” said Gibson. “Quality of life is often rated, at least in part, by the amount of help a person needs to carry out daily activities. However; looking at rehabilitation with a different lens, shifts the focus to what individuals need to live well rather than their so-called ‘deficits’.”
Gibson is the recent co-editor and co-author of a new book entitled Rethinking Rehabilitation, Theory and Practice, which discusses the role of theory and how it applies to advancing rehabilitation research and practice. This book, available as of February 2015, includes 14 chapters from international authors who collectively consider how to integrate the technical aspects of rehabilitation with care practices that attend to the needs of the whole person. In a chapter lead by Gibson, she challenges the notion of ‘normal’ development and how it frames interventions with children and other ways of conceiving what is best, good, or right for disabled children. She explores alternate avenues to current practices and what they enable for children with disabilities, including how we might think differently about goal setting, collaboration, communication and outcome measurement.
This new lens of thinking on rehabilitation and patient care takes a provocative look at our learning, research and practice in rehabilitation.