Gibson, Van Hove and McLaughlin for Online Symposia December 2023

 

Recording: Barbara Gibson, Geert Van Hove and Janice McLaughlin
Passcode: DP6G=Mrx

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Disabling Practices? A Critical Rehabilitation Studies Manifesto. 
Barbara E Gibson, PhD, BMR(PT) (she/her)
Department of Physical Therapy, Termerty Faculty of Medicine, University of Toronto Email: barbara.gibson@utoronto.ca

Barbara Gibson (PhD, BMR[PT]) is a Professor in the Department of Physical Therapy at the University of Toronto, Canada. Her research and scholarship examine the intersections of social, cultural, and institutional practices in producing health, inclusion/exclusion, and identity with disabled young people.

To reference this paper: Gibson, B. E. (2023). Disabling Practices? A Critical Rehabilitation Studies Manifesto.  In Goodley, D., Halsey, R., Scully, J., Singh, S., Titchkosky, T. and Wong, M.E. (Editors). The Disability Matters Scholarship Collection. Sheffield: University of Sheffield. 

Bio: Barbara Gibson conducts critical research and scholarship that aims to infuse disability studies into rehabilitation and the health sciences. Her work investigates the intersections of societal, cultural, and institutional practices in producing health, inclusion/exclusion, and identity with disabled young people. The work is interdisciplinary and intersectional, drawing upon sociological studies of health, bioethics, posthumanism, and critical disability studies. Barbara has over 100 peer reviewed publications and has authored three books - Rethinking Rehabilitation Theory and Practice, Rehabilitation: A Post-critical Approach, and Manipulating Practices: A Critical Physiotherapy Reader. She holds cross-appointments to Bloorview Research Institute in Toronto and the Auckland University of Technology in New Zealand.

What if rehabilitation was grounded in critical disability studies (CDS)? I was trained as a physiotherapist and my scholarship is oriented to bringing CDS into rehabilitation practice, theory, and research. Rehabilitation (rehab) has often been vilified in CDS because of its adherence to the medical model of disability and its practices of normalization. There is a history of harm associated with rehab that perhaps is most unsettling in relation to my field of children’s rehabilitation. Children have been and still are subjected to hours of therapy, week after week, year after year, aimed at correcting their bodies and promoting so-called ‘normal’ physical and social development. Through immersion in rehab and other social spaces they learn to see their bodies and selves as problems to be fixed (Mosleh & Gibson, 2022, Gibson et al, 2015). Normalization goals are not limited to children and pervade all rehab spaces. These serious issues are slowly being addressed as CDS makes its way into rehab teaching, research, and scholarship. Urgent change is needed but will not come about by dismissing the entire field (Shakespeare et al., 2018). Rehabilitation can and does provide useful services for disabled people. Providing a new approach that is oriented to radical change is the aim of an emerging field of scholarship: Critical Rehabilitation Studies. 

Critical Rehabilitation Studies (CRS) invites radical change in how rehab thinks and operates. First and foremost, it demands criticality. Criticality is something new for healthcare professionals and is further muddled by confusion with ‘critical thinking’ which teaches them skills in biomedical ‘evidence-based’ practice. The dominant knowledge in health care is Euro-American, techno-scientific, and positivist in orientation. These ideas masquerade as universal truths which displace and dismiss alternative epistemologies (ways of knowing) such as those from the Global South. CRS challenges these ideas by investigating the taken for granted, attending to power, and critiquing the dominance of bioscience. Moreover, it explicitly works to identify how ableism operates within rehab practices and the (unintended but real) violence such practices perpetrate on disabled people. Moreover, CRS recognizes and promotes the imperative for disabled people to lead and/or partner in reforming rehab. 

In its current practice, rehab reproduces ableism even while striving to support disabled people. This is because ableism operates systemically in healthcare. It is embedded in everything that rehab does – its programs, policies, principles, training programs, organization, funding mechanisms, assessment measures, and the research questions that are deemed relevant. Everything. Solutions are thus only possible when the systemic nature of the problem is recognized and addressed. Rehab practitioners (including educators and researchers) are embedded in the same disability discourses that pervade societies and contribute to processes like internalized ableism. What is needed is to expose and address entrenched systems of thought and how they are operationalized at the programmatic and micro levels of practice.  

There are multiple assumptions that pervade rehab, but perhaps the most damaging is the assumption that disability is a problem that needs to be fixed through normalization. Rehab is not oriented to cure but rather to re-establishing physical and social function. Following injury this represents a return to previous function, or the closest possible approximation. For those with life-long impairments it is also an approximation towards something. That something is normality: normal bodies, normal activities, and/or normal social roles (Gibson, 2014; Gibson, 2016). 

Normality as a goal in rehab is positioned in opposition to disability which is constructed as the problem requiring intervention. Of note, normalization has multiple meanings and varied practices and as such may not always or necessarily be problematic. As Bezmez and colleagues (2021) have demonstrated, normality is ambiguous and constantly negotiated amongst actors in rehabilitation spaces. It is however dangerous to assume that normalcy is always preferable to difference, or that sameness is better than diversity. A key task of CRS is to reject the binary of normal/abnormal and embrace diversity, complexity, uncertainty, and new possibilities. A CRS approach thus partners with disabled ‘clients’, scholars, and advocates to, continually and creatively, reimagine what counts as a positive outcome.

CRS is a transdisciplinary field that deliberately resists definition to allow for innovation and inclusion of diverse perspectives (Setchell et al., 2018). As an open-ended enterprise, it is nevertheless closely aligned with CDS. Its core aim is to end ableism and other axes of oppression by identifying and addressing how they operate in healthcare spaces. My title refers to a manifesto. A manifesto is a declaration of an intention to change the world and it provides a road map to its realization. In that spirit, I call for the following actions to advance CRS and change the world of rehab: 

• Training in disability studies, anti-oppression, and CRS for rehab students, educators, researchers, and practitioners 
• Questioning medical(ized) outcomes and measures in policy, practice, and research
• Exposing and addressing ingrained structures and systems in health and rehabilitation, including systematised and intersecting oppressions
• Retheorizing disabled childhoods and developmentalism and their applications
• Research with an explicit focus on identifying and ending ableism in rehab 
• Promotion of cross disciplinary scholarship and alternative modes of knowledge production
• Partnerships to bridge CDS and CRS in both disciplines

Importantly, and perhaps especially given the aims of the Disability Matters Symposia, this work cannot only be done from within rehabilitation spaces. I encourage my colleagues working in CDS to move beyond dismissal of rehab, to lead and partner in this work, and to help create rehab services and practices that work for disabled people. This is already happening. How can we help it to grow and thrive?  

Viva la revolución!

References

Bezmez D, Shakespeare T, Lee K. Theorising rehabilitation: Actors and parameters shaping normality, liminality and depersonalisation in a UK hospital. Sociology of Health & Illness. 2021 Mar;43(3):713-31.

Gibson, BE. Rehabilitation: A post-critical approach. Boca Raton (United States): CRC Press; 2016

Gibson BE, Teachman G, Hamdani Y. Rethinking ‘Normal Development’ in Children’s Rehabilitation. In: McPherson, KM, Gibson BE, Leplege A, editor(s). Rethinking Rehabilitation: Theory and Practice. Boca Raton (United States): CRC Press; 2015.

Gibson BE. Parallels and problems of normalization in rehabilitation and universal design: enabling connectivities. Disability and Rehabilitation. Special Issue: Designing Inclusive Environments: Shaping Transitions from Theory into Practice. 2014 Mar; 36(16):1328-33.

Mosleh, D, Gibson B.E. Abnormal-Becoming-Normal: Conceptualizations of Childhood Disability in Children's Rehabilitation Textbooks. Scandinavian Journal of Disability Research.2022 April: 24(1), 122–135. 

Setchell J, Nicholls DA, Wilson N, Gibson BE. Infusing rehabilitation with critical research and scholarship: A call to action. Physiotherapy Canada. 2018 Dec; 70 (4).

Shakespeare, T., Cooper, H., Bezmez, D., & Poland, F. (2018). Rehabilitation as a disability equality issue: A conceptual shift for disability studies? Social Inclusion, 6(1), 61-72.

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How is my area of research, theory and scholarship transformed by an engagement with critical disability studies?
Geert Van Hove (he/him)
University of Ghent, Email: geert.vanhove@ugent.be

Geert Van Hove is an Emeritus Professor at Ghent University (Disability Studies).
For the last 25 years, he has been closely involved with families involving their child with disabilities into mainstream schools and with the Flemish Self-advocacy movement. He is a basketball-lover, a jazz cat and a passionate cyclist.

To reference this paper: Van Hove, G. (2023). How is my area of research, theory and scholarship transformed by an engagement with critical disability studies? In Goodley, D., Halsey, R., Scully, J., Singh, S., Titchkosky, T. and Wong, M.E. (Editors). The Disability Matters Scholarship Collection. Sheffield: University of Sheffield. 

Bio: I am a (just) retired University Professor at Ghent University in the field of Disability Studies. I am a daily bicycle user (no racing, just functional, living without a car). I am a basketball addict (played myself when I was young, now watching games of my son and grandson). I am a jazz cat and into the Beatles and Tom Waits.

It is quite an honor to contribute to these seminars together with colleagues and at the same time to be challenged to seek an answer to the question: ...how is your area of research, theory and scholarship transformed by an engagement with (critical) disability studies?....

Between 1975 and 1980 I learned how to become a special education expert. After getting my diploma I started a supported living project for persons with learning/intellectual disabilities. This was my ‘rescue’: there were no groups, there was no campus, the adults we supported became our experts. In 1994 I had the opportunity to help closing an institution in the Netherlands, one of the most exciting things I ever was involved in.

I will join you in searching for temporary answers and will do so based on a structure linked to three historical statements, being:

1. ...Free at last, Free at last... (Martin Luther King Jr., 1963)

2…. It is the economy stupid… (James Carville in the Bill Clinton Campaign, 1992)

3…. If you talk the talk, you should walk the walk… (from an Ohio Newspaper, 1921)

1. Disability Studies and the emphasis on 'equal participation' (Nancy Fraser) of persons with labels focuses on empowerment and liberation; but it also has a liberating effect for researchers in the field of Disability Studies (as I position myself): researchers are allowed to leave their old position: they get the permission, even feel the need, to say goodbye to the old 'expert position'. This upheaval has led to :

- Problems are defined differently. No longer the impairments are the main problem or obstacle. Making use of a process of 'conscientization (Freire, 2000) we learn every day to observe and analyze obstacles in attitudes, (school) culture, the training of 'experts', discriminatory practices,....

- Solutions are defined differently. We do not longer need to take the role of 'objective and detached' professionals (those who most of the time offer 'standard solutions'). Instead, we learn to become 'companions' who built actions together - based on dialogical action and reflection - .

- Roles are defined differently. Persons with labels and their networks are no longer 'docile acceptors' (Freire, 2004). We are challenged to act as allies to concretize the dreams and pans of those we serve/we work and live with.

2. If we strip the second statement of its ableist caricature and bend it to our will we translate it as follows: 'it is all about stories, you know'. We have the privilege of working with two founding mothers of narrative research: Jean Clandinin and Vera Caine. For them, ...Thinking narratively is introduced to challenge the dominant narratives of a phenomenon (here: disability). We all know that in an ableist world, narratives of "normality" and what is expected of a "good citizen" circulate and set the tone. Listening to and capturing stories gives 'counter narratives' the opportunity to stand alongside the dominant narratives. People tell about their experiences; this provides opportunities to understand how individual experiences run together and are influenced by narratives within a given culture, social environment, and period. In several projects we have listened to and deployed stories from parents of children with a label/ from the people themselves. Here we draw on the insights of Fricker concerning 'epistemic injustice'. In her book she argues that there is a distinctively epistemic genus of injustice, in which someone is wronged specifically in their capacity as a knower, wronged therefore in a capacity essential to human value. In doing so, it charts the ethical dimension of two fundamental epistemic practices: gaining knowledge by being told and making sense of our social experiences.  In the past, people with a label were often seen as those who "cannot know," this was sometimes due to communication barriers or to the assumption that they were unable to tell a coherent story. In our 'Without Borders' project where (so far) some 70 people talk about where they are/are not welcome, we did get compelling, accurate stories where we learn two things in particular:

1) If we don't start taking deep-structural measures and keep fiddling at the margins, it is very difficult to meet the conditions to achieve equal participation. Fraser's insights on 'redistribution' - 'recognition' and 'representation' are helpful here.

2) If we take the stories seriously, we can see what 'disability as more' can instill (Titchkosky). The visual thinkers, the activists, those who challenge bodies without disabilities in dance performances, those who act from a wheelchair (without this vehicle being important for the play in which they act), those who devote much of their free time to assisting people in their community, those who testify about their situation, ..... share something and make a difference.

3. Our third historical statement brings us to one of highest challenges in Disability Studies: the real sharing of power. Let me clarify this with a thumbnail-story.... as a teacher, I regularly invite guest speakers. One of my beloved speakers is Sybille who brings her story of her inclusive education journey to teacher education students every year. She is always nicely on time; she looks forward to the class, puts on her most recently purchased outfit and is always well prepared with a power point. A few years back, I invited her again and got a "yes" message back within the hour. I asked her if we had to prepare and got a 'no' back. (She felt she could start from the existing power point) The evening itself, Sybille is her ravishing self in an auditorium with 200 students looking forward to the story of an expert by experience. I get all the technical stuff ready (micro, beamer, computer,...) ask Sybille if she needs anything to drink and almost start introducing her to the audience.... Sybille asks if I can understand that she no longer feels like talking about her school career, that she has graduated for four years now anyway and wants to leave the school days behind her.... I get into my “panic-modus”,  I try to remind her about the student expectations.... she smiles and says : you know I want to talk about my week, what I do at work and what I do with friends and family, I brought a ppt about that.... my stress level drops a little bit.... she smiles again and says: you may well ask me what I learned in school that helps to plan and get through my week.... don't be nervous....

Now and then I miss in some Disability Studies projects/texts the spirit of the painting ‘Les Demoiselles D’Avignon’ of Pablo Picasso: as we know Picasso made sure to juxtapose all kinds of conflicting elements in the painting. For example, the rounded shapes of the women contrast with exaggeratedly pointed painted body parts…—> can we make sure we have attention to as much as possible ‘conflicting’ parts in a project/text? and can this help us to reflect upon the confusion/chaos/disruption we organize by bringing in Disability Studies in an environment that is surely not ready for it

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Working across critical disability studies and critical youth studies to understand disabled youth transitions.
Janice McLauglin (she/her)
Newcastle University, Email: janice.mclaughlin@ncl.ac.uk 

Janice’s work explores how childhood disability or illness is framed from within the worlds of medicine, community and family. The work has developed through partnership with disabled children and their families, organisations that advocate with them and other researchers. We examine the intersections of inequality, citizenship, identity, embodiment and care. Janice is Professor of Sociology at Newcastle University.

To reference this paper: McLaughlin, J. (2023).  In Goodley, D., Halsey, R., Scully, J., Singh, S., Titchkosky, T. and Wong, M.E. (Editors). The Disability Matters Scholarship Collection. Sheffield: University of Sheffield. 

Bio: Professor of sociology at Newcastle University, whose work explores how childhood disability or illness is framed from within the worlds of medicine, community and family. The work has developed through partnership with disabled children and their families, organisations that advocate with them and other researchers. We examine the intersections of inequality, citizenship, identity, embodiment and care. 

Introduction
I am going to focus on how critical disability studies is influencing research I am part of examining disabled young people’s transitions to adulthood. This work is hoping to understand better what happens to disabled young people during this time. We also argue that examining disabled young people’s lives can help research on youth transitions be more inclusive and expand their understanding of what happens to young people marginalised for a variety of reasons. It can help it to step outside prescriptive models of what adulthood looks like and what good transitions to it involve. I will discuss this in terms of 2 connected themes: the body and time.

The Body 
Critical disability studies writers argue that a dominant understanding in the global north is that being able bodied is both normal and idealised. All types of body outside the apparent norm are then seen as secondary, a misfit, monstrous or disposable. Such understandings position vulnerability and infirmity into a separate category of person. This framing disguises the reality that not just certain bodies fail (against normal measurements); all bodies do so, including some young bodies. This understanding is helpful in the way it can highlight the fictional status of normality, while also celebrating the other as a positive human possibility and body from which different imaginaries of our present and future can and do emerge. Connecting these ideas to disabled young people and transitions to adulthood we are considering how templates of ‘normal bodies’ and ‘normal adulthoods’ shape understandings of what are judged as the right kind of transitions and young people. The dominant policy narrative about youth transitions is that the goal should be independence and the pathway is education and the values of aspiration, self-reliance and responsibility.  When this policy frame is turned towards disabled young people the focus is on ensuring that disability is not a barrier to that existing goal. This is a problem because it often focuses on the disabled young person doing the work of removing barriers and having the right aspirations and right kind of body to succeed. It also does not consider alternative futures, possibilities and bodies that are not geared towards such narrow goals (McLaughlin, 2023). 

There are echoes between these arguments in critical disability studies with work occurring in critical youth studies to understand the significance of the body to youth identities and templates for the future. Normative framings of what normal adolescence is inform the social positioning of young people. Studying disability can help inform our understanding of this dynamic by thinking about the significance of embodied differences to what are judged as appropriate and inappropriate youth identities and futures. It can help us explore the complex work all young people, but particularly those in marginalised positions, are doing to manage difference. It also helps explain why for some the response is to seek the safety of being seen as normal.

Time
Critical disability studies also opens up altered ways of thinking about time. These ideas can help critical youth transitions research move beyond an approach to time, which is about looking forward, to allow for time that is non-linear and non-progressive. Here I am very much drawing from work by Barbara Gibson and colleagues (2009), particularly the work they have done with young people with Duchenne Muscular Dystrophy. They argue that the individualism of the usual life course associated with young people is fixed by ‘moral imperatives’ about spending time productively by working towards the future. In contrast, Gibson and colleagues argue that young people with Duchenne value ‘shadow-time’, that is time spent exploring different kinds of creative activities, being with people, and participating in care of both themselves and of others. Therefore, examining disability can help transitions research in its critical consideration of time as a regulatory dynamic policing possible ways of spending time and the value of different time practices (McLaughlin, 2020). 

Youth studies work is already exploring how ‘template’ transitions to adulthood are increasingly not the norm, as various socio-economic changes across the labour market, technology, education and cultural life mean transitions are more varied. Yet the templates remain and remain powerful in policy and as frameworks used to judge young people for not succeeding. Such judgements often target marginalised young people, including disabled young people, for not using time appropriately. Part of what critical disability studies can do is contribute to the critique of such templates and the regulatory ‘moral imperatives’ embedded within them. As youth studies reflects more on time, as well as capture the problems with thinking of time as a linear dynamic moving towards known futures, critical disability studies can also help us be more open to seeing the value in alternative ways of spending time and dwelling in space.  

Conclusion
Rethinking bodies and time through critical disability studies when thinking about disability and youth transitions contributes on various fronts. It can help us think about the relationship between bodies and time in shaping templates of the right kinds of disabled young people and the right kinds of transition approaches and outcomes. Disabled young people negotiate relational dynamics of inclusion and exclusion daily, bringing in their lived realities and strategies into critical youth transitions research can help produce more intricate understandings of how transitions can occur across different rhythms of time and through different connections/disconnections between actors. Critical disability studies can also help us think about alternative approaches to the body and time that escape the limitations of existing templates. Alternatives that emphasise interdependencies of people, technologies and communities across time and space. Instead of seeing young people as individuals striving forward our emphasis can be on young people as embedded in relational ties that create dynamics of belonging in the present as well as goals for a future. Critical disability studies work can support such endeavours by emphasising the relationality and interdependency of transition processes. 

References 

Gibson, B. E., et al. (2009). "'Futureless persons': shifting life expectancies and the vicissitudes of progressive illness." Sociology of Health & Illness 31(4): 554-568.

McLaughlin, J. (2023) “Bringing disability studies and youth studies together to enhance understandings of youth transitions.” Journal of Youth Studies, http://dx.doi.org/10.1080/13676261.2023.2182674,

McLaughlin, J. (2020) Valuing care and support in an era of celebrating independence: disabled young people’s reflections on their meaning and role in their lives. Sociology. 54(2):397-413. https://doi.org/10.1177/0038038519868630.