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Two outstanding international pioneers in their respective fields of rehabilitation medicine will deliver the keynote addresses at the forthcoming AFRM/NZRA Combined Rehabilitation Meeting.
Associate Professor Barbara Gibson from the University of Toronto will deliver the Norington Lecture on 14 October at the AFRM/NZRA Combined Rehabilitation Meeting.
Associate Professor Gibson is a physical therapist with a PhD in bioethics. She is also a Senior Scientist at the Bloorview Research Institute at the Holland Bloorview Kids Rehabilitation Hospital where she directs the Critical Disability and Rehabilitation Studies (CDARS) unit.
The Norington Lecture is named in memory of the late Bradney Norington, CBE, the first President of the Australian College of Rehabilitation Medicine (ACRM). During his medical studies at Sydney University, Dr Norington developed acute poliomyelitis and was severely affected by extensive severe residual paralysis, restricting him to life in a wheelchair. However, he graduated and went on to work and study in rehabilitation around the world.
Associate Professor Gibson said she was honoured to be invited to deliver the Norington Lecture and will speak on the debate over the fundamental purposes of rehabilitation.
“Rehabilitation has been experiencing a philosophical shift as there is less of a focus on normalising people’s bodies and impairments and an increasing emphasis on the facilitation of functional activities and community participation. There remains, however, considerable debate regarding what constitutes ‘good’ outcomes for people with disability. These debates come down to questions of the norms and values we hold within the rehabilitation community. For example, many of our outcome measures assume a direct link between functional abilities and quality of life, yet this link has been shown to be deeply flawed.”
She also said that she has an interest in both physiotherapy and philosophy and the two disciplines come together in her work.
“When I began my career as a physiotherapist, I suppose I was naturally drawn to the ethical and philosophical issues that arose in practice. In particular, my experience working in a paediatric intensive care unit, where life and death decisions were made based on judgments of future quality of life with a disability, served as a catalyst for me to pursue a research career that could focus on exploring the ethics of such practices.”
In her presentation, Associate Professor Gibson will address the issue of professionals’ and clients’ expectations of ‘rehabilitation’.
“The gradual shift in rehabilitation philosophies from a focus on impairment to participation is not always transparent to the recipients of care and may conflict with their own values and goals. In an era of ‘client and family centred care’ interventions are ostensibly meant to focus on client values, and yet there is a paucity of research investigating how these values align with rehabilitation norms and priorities.”
Associate Professor Gibson says there’s still a great deal of emphasis on achieving ‘normal’ movement and mobility which may not always be the answer.
“Enabling mobility is a primary focus of rehabilitation, and yet larger questions about hierarchical valuing of some forms of mobility over others, and the effects on the recipients of care, are largely absent. For example, walking is considered a better outcome than wheeling in almost all rehabilitation practices and measures. Perhaps more provocatively, an alternative mobility like crawling would be viewed as a ‘failure’ of rehabilitation and/or a personal ‘tragedy’. Nevertheless there are adults who will tell you that their preferred mode of mobility is crawling. I [in the lecture] will explore the opportunities for creative practices that arise when assumptions regarding ‘good’ or ‘bad’ mobility outcomes are reconsidered.”
Professor Derick Wade, a consultant in Neurological Rehabilitation at the Oxford Centre for Enablement in the UK, will deliver the George Burniston Oration on Wednesday, 14 October at the AFRM/NZRA Combined Rehabilitation Meeting.
The George Burniston Oration is given every year to honour the late George Burniston, OBE, CMG. Dr Burniston was born in 1914 and graduated in medicine from the University of Sydney in 1939. He served with the RAAF and the RAF during the Second World War. Dr Burniston established and commanded the No 2 RAAF Medical Rehabilitation Unit at Jervis Bay in 1944. He was one of the great pioneers of rehabilitation medicine in Australia and was awarded an OBE in 1969 and a CMG in 1972 for his services in the field of rehabilitation of the handicapped. He died in 1992 at the age of 77.
Professor Wade is also considered a pioneer in the rehabilitation field. He trained in general medicine as well as several specialties including neurology, neurosurgery, psychiatry and neurophysiology. He has been researching stroke and rehabilitation for the past 35 years.
Professor Wade said there have been many achievements since he began his research.
“Since 1980, we’ve achieved the recognition that measured outcomes and randomised controlled trials are possible in rehabilitation, even though at the time, they were considered impossible.
“During my career there has been a surge of rehabilitation research, led by stroke research, and the recognition that stroke rehabilitation (in stroke units) is cost-effective. This has been combined with the development of meta-analysis, systematic reviews and multi-centre trials.”
He also said there are several challenges in the area of stroke rehabilitation.
“The major challenge is to overcome the dominance of the biomedical model of illness, and to reduce the focus on disease and technology towards disability and the patient. We need to explain what rehabilitation is (and is not) and can achieve (and cannot achieve) and gain recognition that rehabilitation is a very complex matter, not just ‘therapy’.”
Professor Wade’s research activities cover a wide area. He has published over 170 papers in peer-reviewed journals on many different studies, including 12 randomised controlled trials and studies on the natural history of illness in disabling neurological conditions. He is currently working on four trials and hopes to set up several trials in China, which may include Chinese massage and feedback to encourage movement.
He says his approach to rehabilitation is holistic.
“I believe in focusing on the patient’s perspective; considering the illness at different, equally relevant levels; weighing up all the contextual factors and accepting that relationships between factors are complex.”
Professor Wade says he is looking forward to sharing his knowledge at the AFRM/NZRA Meeting in October.
“I hope to persuade delegates that we must alter the environment in hospitals so that it does not further disable people. I will warn that not using the biopsychosocial, holistic model will lead to a failure of rehabilitation both as a specialty, and for individual patients.
“I will also stress that understanding the patient’s perspective is essential so that relevant motivating goals are set and that patient practice and engagement in the process is central.
“I will outline my belief that healthcare should have a rehabilitation service that runs in parallel with healthcare from the outset,” Professor Wade concluded.
Systematic reviews, which once upon a time were new and unfamiliar, have now proliferated and are commonplace. Where once it was difficult to read all the clinical trials published on a given topic, it is now a challenge to just get through all the systematic reviews that have been written! In response to this, the Cochrane Collaboration (which all New Zealanders can access for free via the Ministry of Health website) has begun publishing Cochrane Overviews. These are, in essence, systematic reviews of systematic reviews.
One excellent example of a Cochrane Overview is a recent publication by Pollock and colleagues (2014) entitled “Interventions for improving upper limb function after stroke.” For this overview, Pollock et al. collected, critically appraised, and combined the findings from 40 complete systematic reviews on various interventions for hemiplegic arms and hands after stroke. This includes 19 Cochrane reviews and 21 published non-Cochrane reviews. The review covers 18 individual interventions, including investigation of dosages (e.g. frequency and intensity of exercise) and the setting for intervention.
So how useful are these new types of reviews? What can a Cochrane Overview actually tell us about therapies for people with upper limb hemiplegia after stroke? In fact it would appear quiet a bit! Here is summary of some of the key findings from Pollack et al.'s (2014) review:
The review concluded that there was still considerable room for improving the quality of research trials into upper limb therapies, and in particular into determining the optimal intervention dose for arm rehabilitation.
William Levack is an Associate Professor of Rehabilitation at the Rehabilitation Teaching & Research Unit, University of Otago, Wellington, New Zealand. Twitter: @DrLevack
Pollock et al. (2014) Interventions for improving upper limb function after stroke. Cochrane Database of Systematic Reviews. Issue 11. Art. No.: CD010820. DOI:10.1002/14651858.CD010820.pub2.
Popular culture plays a significant role in how the general public views disability. Representations in the media influence how people think about impairments, and therefore how they act towards people with differences in body structure and function. If impairments are presented in movies as something to be feared or despised, then people will learnt to fear and despise them, with these attitudes (and subsequent behaviour) contributing to everyday disabling experiences for others.
Recently, I was playing a free online game, Facility Z, in which the ‘twist’ at the end involved discovering some guy in a wheelchair as the villain of the story (i.e. the evil scientist in a wheelchair cliché). This got me thinking about all the times that people with disabilities have been villains in movies, books, and games. (Of course, people with impairments are frequently the heroes in these stories too, raising other questions about the role of the ‘super crip’ in popular media, but I’ll save that discussion for another day.)
Disability is often presented in these stories as representing ‘otherness’, with authors of these games, books, and movies using disability in an attempt to make their hero’s nemesis more scary. This presents people with impairments as being ‘not like us’ and therefore objects of uncertainly and a potential threat. Negative stereotypes, discriminatory views of disability, and able-bodied people’s fear of the unknown are used as tools of convenience by the author to drive the story’s narrative. Examples of this include Dr Strangelove (in a wheelchair) and Dr No (with mechanical hands) from the James Bond franchise, and Davros, creator of the Daleks, from Doctor Who.
Other times authors use disability as a justification for why the villain in a story turned bad. The disability becomes a plot point. Perhaps the villain has been seeking a cure for their impairment and as a result of an experiment going ‘horribly wrong’ the otherwise well-intentioned antagonist turns ‘bad’. Inevitably the usually able-bodied hero has to rescue the villain from themselves, or save other people from them, perhaps unwillingly destroying the villain in the process. Here, disability is presented as the origin of evil; an explanation why people with good intentions might go bad. An example of this type of villain is Spiderman’s nemesis, the Lizard, who turned into a superhuman monster after daring to dabble with reptilian DNA in an attempt to grow back his amputated arm. Another example is the character Blizzard in the 1920's silent film classic, The Penalty, the plot of which, according to Wikipedia, is as follows: "Driven insane by the social pressures of being forced to walk on crutches, (bilateral amputee) Blizzard becomes a crime lord. He tracks down the doctor who performed his operation, and plots a twisted revenge: kidnap the doctor's daughter's fiance, and graft his legs onto Blizzard's stumps."
But in an inclusive world, people with disabilities should have every chance of being the villain as they do of being the hero in these stories. Is it possible then for a person with impairments to be the villain of a story, but where their impairment is incidental to the plot? I've wondered whether one movie character has recently achieved this – Bolivar Trask from “X-men: Days of Future Past”. Played by Peter Dinklage (fresh from massive popular acclaim as the anti-hero, Tyrion Lannister, in Game of Thrones) Trask is the evil scientist who takes it upon himself to defend humanity by creating giant robots designed to hunt down and kill the growing mutant superhuman population (the X-men and their community; i.e. the heroes of the story). Interestingly, Bolivar Trask in the original X-men comic book on which the movie is based, did not have a height restricted disorder. But because Dinklage (the actor) has achondroplasia, Trask (the character) is also restricted in height. Sure, the introduction of a Trask with dwarfism in the movies adds an interesting element to his character, but this is utterly incidental to Dinklage’s massive onscreen presence, which is what brings Trask to life for the audience. With a recent resurgence of criticism of able-bodied actors playing disabled characters, it is very refreshing for the movie casting to head in the other direction for a change.
© 2015 New Zealand Rehabilitation Association, Inc.