Disability Studies and diverse perspectives – a review of the Nordic Network of Disability Research Conference

The geographical isolation and wild nature of Iceland’s geology provided an enchanting background to the Nordic Network of Disability Research (NNDR) conference, held in Reykjavik, Iceland, in May. The NNDR is a multidisciplinary network which focuses on disability and marginalisation; themes that resonate strongly with my work as a researcher and as an occupational therapist. I am grateful to the ESRC South Coast Doctoral Training Partnership (SCDTP) and the Royal College of Occupational Therapists for awarding me the funding that made my attendance possible. It was a formative experience, introducing me to Disability Studies as a discipline, provoking consideration of how my work can be situated within this, and illuminating the power of research as activism. It was also my first experience presenting a research poster at an international conference.

My doctoral studies began in October 2022. My aim is to work collaboratively with people with profound and multiple intellectual disabilities (PIMD), developing an understanding of the relationship between engaging in meaningful occupations and the experience of belonging. People with PIMD have a profound cognitive impairment, very high support needs, and often, additional physical and sensory disabilities (Doukas et al., 2017). A critical, evolving ethnographic case study methodology will be adopted for my research and data will be collected iteratively over the course of a year. This longitudinal approach will enable the complex communication and social interactions of the participants to be explored in depth (Simmons & Watson, 2014). Sustained contact with participants in the context of their everyday lives will also allow exploration through the lens of occupational therapy theory, where individuals are considered embedded within cultural environments that facilitate or inhibit occupational participation (Hammell, 2013).

Before the conference officially began, the University of Iceland hosted two workshops aimed at PhD students in the field of Disability Studies. These were popular and doctoral students from several countries presented their work. Kristina Enghall (from Uppsala University, Sweden) discussed the historical abuse at the notorious Vipeholm hospital, where people with intellectual disabilities were exposed to degrading abuse and medical trials without their consent. Soon after, Maija Koivisto, (from the University of Helsinki), discussed the forced sterilisation of deaf people in Finland from 1929-1970. Many of the people sterilised were also in institutions. These were emotionally intense topics to open the workshop with. I’ve since been reflecting on the historical context for people with intellectual disabilities in the UK and considering its relevance to my work going forwards. While the presenters were highlighting the horrors of the past, they were also articulating the need for a nuanced view to be considered in the present. The discursive pressure to condemn everything in the past as ‘bad’ and the present times as ‘good’ was highlighted. This has resonance for people with intellectual disabilities in the UK today who no longer live in institutions but are still oppressed by societal stigma (Pelleboer-Gunnink, van Weeghel, & Embregts, 2021) and face significant, avoidable health inequalities that contribute to premature deaths. Further information regarding this can be found in the annual ‘Learning from Lives and Deaths – people with a learning disability and autistic people’(LeDeR) reports.

Connections I made by attending the PhD workshops laid the foundations for networking that continued throughout the conference. Informal discussions over lunch or walking to and from seminars all contributed to developing international links and expanding my fledgling research network. The following summary focuses on highlights from the programme relevant to people with profound intellectual disabilities. The conference programme was packed and detailed planning was required to navigate the timetable. Sessions of direct relevance included a discussion on the experiences of fathers who care for adult children (by researchers from the Maria Grzegorzewska University, Poland) and a presentation on the findings from a survey conducted by researchers from across the UK which explored the impact of the Covid 19 pandemic, (further information on this study is available in this article by Caton et al., 2023). These examples illustrate how research relating to many aspects of the lives of people with profound intellectual and multiple disabilities was represented in the programme, and that Disability Studies as a field includes research in which people with very profound disabilities are included as participants. Presentations relating to projects in which researchers worked alongside people with intellectual disabilities were also included in the programme, but these were mostly limited to research co-produced with people with mild to moderate cognitive disabilities.

There were limited exceptions to this representation. Synne Nese Skarsause (from VID University, Norway) presented work relating to embodied ways of being and people with PIMD. She highlighted how certain characteristics can enhance the possibility of empathy as a tool for connection. Synne suggested that despite the challenges inherent in this approach, the concept of empathy could contribute to supporting inclusion in the research process, positioning people with profound and multiple intellectual disabilities as subjects of knowledge.

This was followed by a discussion on terminology by Melanie Rimmer from the Open University, and Cameron Richards from The West Midlands Self Advocacy Network, during which they explored the social construction of intellectual disabilities. In their presentation, they referred to the ‘euphemism treadmill’ that exists in relation to labels used to describe people with intellectual disabilities. As a researcher from the UK who uses both the terms ‘learning disabilities’ and ‘intellectual disabilities’ (depending on the context) I could identify with this. Cameron has an intellectual disability and co-presented two sessions at the conference. There were other presentations delivered by people with intellectual disabilities and their allies. For example, the members of the ‘My Life My Choice’ research group led a discussion on ‘Sticky labels and their consequences: people with intellectual disabilities and “behaviours that challenge others”’. The physical presence of people with intellectual disabilities at the conference felt significant but also highlighted how people with profound intellectual and multiple disabilities were conspicuous by their absence. The conference venue was physically accessible, with large lifts and wheelchair-friendly transport available between the conference hotels and the airport. It may have been possible to hire specialised equipment, such as hoists, locally, but perhaps the complexity (and cost) of travelling to Iceland and the somewhat frenetic atmosphere of international conferences worked against people with the most complex disabilities attending.

On the second day, I presented my poster. This detailed the theoretical perspectives on which my early PhD work has focussed so far, illustrating the connections between co-occupation and belonging for people with profound intellectual and multiple disabilities, drawing on social and occupational science theories. Co-occupations are defined as interactive occupations where the experiences of the people involved are reliant upon the engaged responses of the other person (Pierce, 2009) and the overarching concept behind my research is that, fundamentally, the interpersonal connection of people to each other as they engage in meaningful occupation can foster a sense of belonging (Wilcock & Hocking, 2015). Reciprocity is considered a key factor in facilitating engagement in co-occupations and while authentic occupational engagement for people with profound disabilities necessitates the development of familiar and responsive relationships (Haines, 2015), these relationships are characterised both by dependency and reciprocity (Skarsaune, 2022).

I conclude by discussing the final keynote address, delivered at the end of a packed day of seminars and presentations. This needed to be remarkable to cut through the attention weariness of the conference attendees. However, the presentation easily captured the attention of the audience. It was delivered by Marjorie Aunos, PhD, an international researcher and clinical psychologist from Canada. Marjorie is also chair of the Parenting and Parents with Intellectual and Developmental Disabilities Special Interest Group (SIRG) hosted by the International Association on the Scientific Study on Intellectual and Developmental Disabilities. Following a road traffic accident, she became a disabled parent, and her keynote address included her reflections on the stigma and challenges she has encountered as a newly paraplegic single parent (her son was 16 months old at the time of the accident). This was a moving and memorable ending to the conference – her story of recovery is one of resilience and hope in the face of extreme adversity. The presentation concluded with the suggestion that perhaps, we are all only ‘temporarily able’, and that challenging the dominance of ableism within society is of fundamental importance to everyone.

References

Caton, S., Bradshaw, J., Gillooly, et al. (2023) Digital participation of people with profound and multiple learning disabilities during the Covid‐19 pandemic in the UK. British Journal of Learning Disabilities, 51, 163–174.

Doukas, T., Fergusson, A., Fullerton, M., & Grace, J. (2017). Supporting people with profound and multiple learning disabilities, Core and Essential Service Standards, Downloadable: www.pmldlink.org.uk/resources/#pmld-standards [Accessed 03/06/2023]

Hammell, K. R. (2013) Occupation, well-being, and culture: Theory and cultural humility. Canadian Journal of Occupational Therapy. Revue Canadienne d’ergotherapie, 80(4), 224–234.

Haines, D. (2015) Occupational therapy supporting people with profound intellectual disabilities to engage in occupation at home. Thesis, University of Brighton

Pelleboer-Gunnink, H. A., van Weeghel, J., & Embregts, P. (2021) Public stigmatisation of people with intellectual disabilities: A mixed-method population survey into stereotypes and their relationship with familiarity and discrimination. Disability and Rehabilitation, 43(4), 489–497.

Pierce, D. (2009) Co‐occupation: The challenges of defining concepts original to occupational science, Journal of Occupational Science, 16(3), 203-207.

Skarsaune, S. N. (2022) Self-determination of people with profound intellectual and multiple disabilities. Developmental Medicine and Child Neurology, doi: 10.1111/dmcn.15363.

Simmons, B. & Watson, D. (2014) The PMLD Ambiguity: Articulating the Life-Worlds of Children with Profound and Multiple Learning Disabilities. Karnac.

Wilcock, A.A. & Hocking, C. (2015). Third edn. SLACK.