Putting down verbal and cognitive weaponry: the need for ‘experimental-relational spaces of encounter’ between people with and without severe intellectual disabilities

Abstract

Social inclusion policies often assume that community integration is beneficial for all people with disabilities. Little is known about what actually happens in encounters between people with and without severe intellectual disabilities in the public space. Based on social-constructionist and responsive-phenomenological insights, we performed participant observation, semi-structured interviews and researcher reflexivity to study encounters between Harry (pseudonym), a man with a severe intellectual disability, his neighbours, fellow service-users, support professionals, and the first author. A thinking-with-theory strategy was adopted to interpret and deepen observations and reflections. We argue for more 'experimental-relational spaces of encounter' between people with and without severe intellectual disabilities, wherein the latter put down their verbal and cognitive weaponry. This proved to be more appropriate for spending 'quality time' with Harry then typical satisfactory neighbourhood interactions -often embedded in verbality, habits, routines and rationalizations that do not reflect the existence of people with severe intellectual disabilities.

Responsieve beleidsevaluatie: theorie en praktijk van een participatieve methode met impact

“…In de chronische zorg is bijvoorbeeld de maatschappelijke participatie van mensen met hersenletsel responsief onderzocht (Woelders, 2019). In de zorg voor mensen met verstandelijke beperkingen werden supported employment programma's onderzocht (Widdershoven & Sohl, 1999), is het omgekeerde integratiebeleid responsief geëvalueerd (Bos & Abma, 2022) en zijn kwaliteitscriteria voor vrijheidsbeperkingen gedefinieerd na een evaluatie van vrijheidsbeperkende maatregelen in de praktijk (Abma et al, 2008). In het Centrum voor Cliëntervaringen is samengewerkt met vele soorten cliënten en stakeholders vanuit de missie om samen de kwaliteit van leven van burgers te verbeteren .…”

Meaningful moments of interaction with people with profound intellectual disabilities: Reflections from direct support staff

“…However, staff emphasised that they could not know for sure how the person with profound intellectual disabilities valued a moment of interaction. This is a challenge for proxies in general (Maes et al, 2021), as well as for ethnographic and phenomenological researchers (e.g., Bos & Abma, 2021). Although there will always be some uncertainty in how persons with profound intellectual disabilities perceive and experience situations, additional information about how people with profound intellectual disabilities perceive such moments of interaction might be obtained by using physiological parameters in combination with observation (e.g., Vos et al, 2013).…”

“…Establishing a high‐quality relationship with a person with profound intellectual disabilities or profound intellectual and multiple disabilities can be challenging for support staff, as the subtle, idiosyncratic way of communicating of persons with profound intellectual disabilities makes it difficult for staff to relate (e.g., Bos & Abma, 2021; De Schauwer et al, 2021). People with profound intellectual disabilities have severe cognitive disabilities (IQ below 20; cognitive level of functioning below 24 months), often combined with sensory, motor and medical problems (Nakken & Vlaskamp, 2007).…”

The Necessity of Unsettling Encounters in Collaborative Research – Reflections of Two Researchers without Experiential Expertise

“…Consequently, I became increasingly critical of my initial dominant and onesided position as verbal and cognitive meaning-maker interacting with non-verbal research partners -assigned to capture what could be expressed by academic means and frames of reference -and I tried to experiment with more fitting, non-verbal approaches (e.g. Bos & Abma, 2021). The discussed case, thus, fundamentally questions the scope, assumptions, and relevance of contemporary scientific knowledge production processes, challenging some of its fundamental assumptions, thereby being of high epistemic value to the field of future collaborative research and beyond.…”

“…Since collaboration and participation are, by definition, relational phenomena, they involve experiential forms of knowledge that do not come compartmentalized but are bound to situated narratives and emotionally charged context. Thus, working in collaborative projects requires reflecting on power asymmetries (Carr, 2019;Groot & Abma, 2019), pre-reflexive tendencies (Bos & Abma, 2021;Happell et al, 2018), and performing "passibility", i.e. postponing judgement despite reflexive tensions and suffering (Bos & Kal, 2016;Lyotard, 1988), in order to facilitate process-oriented outcomes such as mutual learning, personal growth, or empowerment (Banks & Brydon-Miller, 2019;Wakeford & Sanchez Rodriguez, 2018;Wright & Kongats, 2019).…”