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.

Points of interest

• An increasing number of people with severe intellectual disabilities live in homes in a neighbourhood setting.

• However, in everyday neighbourhood life people with and without severe intellectual disabilities hardly ever encounter each other in a way both of them like.

• The research shows that this lack of pleasant encounters can be related to powerful rules about how we should interact in the public space in the 21^st century.

• In the neighbourhoods we studied, people without intellectual disabilities are in control of these rules. They prefer verbal and cognitive interactions in the public space. Non-verbal and less cognitive approaches are often seen as inappropriate.

• The research recommends that people without intellectual disabilities should open up for more fitting ways to communicate with people who cannot speak (for themselves).

Keywords:

• Encounter
• relational otherness
• verbality
• cognition
• mainstream/margins
• researcher reflexivity

Introduction

People with a disability share a long history of exclusion, marginalization and stigmatization (Campbell 2018; Foucault 2006; Goffman 1961; Goodey 2011; Oliver 1996; Ravaud and Stiker 2001). Since four decades, a growing number of disability rights advocates is joining forces to argue for an equally valued societal position for people with disabilities, as full-fledged citizens (Atkinson 1999; Goodley 2011; Gray and Jackson 2002; Oliver 1996; UPIAS 1976).

In response to this growing advocacy movement, worldwide many inclusion, participation and citizenship policies and legislations have been developed to enhance the community integration of people with disabilities in society – ranging from dismantling large-scale institutions (Beltman 2001; Cummins and Lau 2003; Mansell and Ericsson 1996) and discouraging exclusionary educational and vocational systems (Akkerman 2016; EASNIE 2016) to promoting and stimulating space in the mainstreams of our societies for the full range of human diversity (United Nations 2006, 2011).

Despite the many changes this caused, over the last two decades the focus on community integration in mainstream society (via housing, working and education), is also increasingly criticized as too neo-liberal. Many scholars deem this operationalisation self-referential and inadequate when it is primarily based on prevailing ableist values like independence and self-determination, and therefore insufficiently attunes to what is at stake in the lifeworld of people with significant intellectual, cognitive and psycho-social disabilities (Bach 2017; Stainton 2005). They advocate a more comprehensive and relational approach of inclusion and participation, thereby challenging the ability/disability binary (De Schauwer et al. 2021) and recognizing the broad range of human diversity, expressed in (contested) social identities (Rapley 2004), (power) inequalities (Bos and Kal 2016; Meininger 2013), and both individual and communal preferences, desires, needs, capacities and complexities (Clifford Simplican 2015, 2019a; Cobigo et al. 2012; Hall 2005, 2010; Meininger 2008; Renwick et al. 2019).

In line with this critique, in the Netherlands a recently flourishing inclusion policy alternative is ‘reversed integration’ (Bos 2016; Venema, Otten, and Vlaskamp 2016): parts of formerly sheltered institutional terrains are sold, redeveloped and then opened up for people without intellectual and/or psychiatric disabilities to live, recreate and/or work in the vicinity of the original residents (with often severe intellectual and/or psychiatric disabilities). Slowly proliferating since the early 1990s, reversed integration policy is a government approved compromise between complete deinstitutionalization and maintaining large-scale sheltered residential care facilities (Tweede Kamer 1995). Policymakers, care providers and family members who adopted this alternative, believed that reversed integration could unite the much appreciated freedom of movement, safety, and support services of traditional residential care facilities with the everyday excitement and interactions of a mainstream neighbourhood (Bos 2016).

Apart from that, however, reversed integration very much resembles the majority of inclusion and participation policies in the Netherlands. It is marked by a deliberate emphasis on the commonalities between people with and without a disability and the many enriching facets of diversity (Tweede Kamer 1996), and rooted in a wish to facilitate normalization (Nirje 1969), social role valorisation (Wolfensberger 1983) and equal citizenship (Van Gennep 1997) for people with disabilities. With regards to social inclusion, its basic assumption is that both physical proximity and functional integration are prerequisites to mutually rewarding encounters and relationships. Thereby, like the inclusionary frameworks it originates from, reversed integration does not address the critical insight that if the imputing of ‘culturally valued’ roles like citizen or neighbour is aligned with unchallenged ableist values and the ability/disability binary (De Schauwer et al. 2021), this might easily hinder rather than improve the lives of people with intellectual disabilities (cf. Campbell 2008).

Until recently, it was unclear whether and how people with severe intellectual (and/or multiple) disabilities – the majority of the initial residents of reversed integration settings – could benefit from everyday neighbourhood life. Also, very little was known about how the original residents, newcomers and support staff would respond and relate to each other in these extraordinary neighbourhood settings, and which meanings they would attach to their encounters with others.

In order to gain more insight into what happened in these encounters, the first author conducted PhD-research in four reversed integration settings, between 2010 and 2015 (Bos 2016; Bos and Kal 2016). An open, emergent research design was applied, collecting narrative, observational and reflective data through a methodological mixture of participant observations, semi-structured interviews and researcher reflexivity.

In this paper, we present a reflexive and critical narrative about a series of encounters between Harry, an initial resident with a severe intellectual disability, his new neighbours, support staff, and the first author. The purpose of presenting this narrative is to argue why it is both desirable and crucial – in care, research and public settings – to strive for a social environment that enables people with and without severe intellectual disabilities to engage with each other in extraordinary ways (Meininger 2010, 2013; cf. Foucault and Miskowiec 1986). Therefore, we illustrate how only after stakeholders without disabilities (including the first author) were ready to abandon their familiar, verbally dominated, ways of relating to others – embedded in habits, routines and rationalizations that do not reflect a connection with people who do not speak – they became susceptible for, to them unfamiliar, non-verbal and seemingly non-logical, but more receptive ways to share moments in life with someone who appeared strange to them.

After a succinct description of our epistemological, methodological and personal frames of reference, we continue by presenting a detailed, reflexive account of a series of both confusing and (thought-) provoking encounters with Harry, based on fieldnotes, an interview transcript and the reflexive log from the first author. Then, following a ‘thinking with theory’-approach (Jackson and Mazzei 2013), we reflect on this narrative with critical ethnographic, responsive phenomenological and care ethical insights. This ‘assemblage’ of empirical and theoretical ‘text machines’ (Deleuze and Guattari 1987/2003) leads us to map four entangled pioneer trails for people committed to supporting, caring for, doing research with and making policies concerning people with disabilities who cannot speak for themselves, in ways that keep provoking prevalent norms and mores: 1. experimental-relational spaces of encounter, 2. inerasable difference (Bos and Kal 2016; Waldenfels 2004, 2011a) 3. moral humility (Young 1997) and 4. a passible performance (Brons 2014; Lyotard 1988).

Epistemological lens

This study combines insights from social constructivism (Gergen 1985, 2012) and related epistemological approaches (Niessen 2007; Thompson and Varela 2001) with a critical ethnographic (Denzin 1997; Madison 2005) and responsive phenomenological perspective (Van Manen and Li 2002; Waldenfels 2010, 2011a).

Therefore, we consider humans a priori as animals who, in a constant dynamic between their own embodied and pre-reflexive tendencies, emotions, experiences, interpretations and representations and those of others, respond to the demands of others, and to the familiar physical, social, institutional, political and cultural context around them (Waldenfels 2004, 2011a). However, since we can never share the same perspective nor be in the exact same position as the other – due to physical, spatial, temporal, sensorial and social reasons – our responses to him/her are never completely in the right time, at the right place nor to-the-point. The otherness of any other person is thus incomprehensible to each of us; hence every attempt to do right by him/her is insufficient (Bos 2016; Waldenfels 2011b).

Consequently, we understand every construction and legitimation of knowledge that emanates in responsive processes between a person and his environment as a non-redundant sense-making endeavour, undertaken in order to survive or succeed in a specific context – thereby inevitably reinforcing familiar and contextually approved attitudes, behaviours, interaction styles, perceptions, views of man and worldviews. In other words: in interactions with others, humans (academics included) tend to act out explicit and tacit insights in, and beliefs about, their position of power and responsibility regarding others (i.e. humans, species and things) by responding and relating to them with their body, emotions, experiences, thoughts, attitudes, behaviour and language – in ways that fit their favourable frames of reference. Therefore, these sense making processes might be seen as continuous attempts to comprehend and prevail over whom and what is perceived (Benjamin 1998; Butler 2004; Kunneman 2017).

In line with this, we consider our observing of, engaging in and thinking and writing about what happened in encounters between people with and without severe intellectual disabilities as an ethically and politically driven, interactive, polyphonic and partial knowledge production process. After all, everything we present in this paper about what participants and researchers shared and identified with each other, depends on the extent to which each of them was responsive to the other’s appearance, demeanour and communication style, as well as the extent to which they were invited, able and willing to reflect on their own responsiveness (cf. Hamington 2018).

Methodological approach

Design

In line with this relational, interactive, (care) ethical and political notion of knowledge construction, we chose a responsive research design – which focuses on fostering a horizontal, open dialogue between stakeholders in order to stimulate social justice and equality (Abma, Leyerzapf, and Landeweer 2017; Abma and Widdershoven 2014; Guba and Lincoln 1989; cf. Leget, Van Nistelrooij, and Visse 2017).

The primary goal of our responsive evaluation was to stimulate an equal dialogue between the perspectives of the various stakeholders in reversed integration settings, a dialogue that would lead to better personal insight and mutual understanding about what did (and could) happen in encounters between neighbours with and without severe intellectual disabilities and support staff.

Data collection and quality criteria

The overarching research process took place in four Dutch reversed integration settings, from 2010 until 2015. For two-and-a-half years, participant observation and semi-structured interviews (Davies 1998/2008; Madden 2010; O’Reilly 2005) were performed to gain a thorough understanding of what was at stake in encounters between people with and without severe intellectual disabilities. What, according to these stakeholders, was especially of interest in reversed integration settings? How did they experience each other’s presence? And what did they identify as the most important issues, concerns and values?

Since responsive researchers acknowledge that they contribute their own perspectives and co-construct the stories of the participants by their doing research, we also reflected systematically on our own positions, beliefs and motives in relation to our research participants and themes. The first author did this by keeping a reflexive log throughout the data collection process, the entries of which he used to write auto-ethnographically (Ellis 2004; Hayano 1979; Renders 2013). We present a thickly descripted narrative which is partly constructed by field notes from over 80 h of participant observation of encounters with Harry (persistent observation and prolonged engagement) and by an interview transcript with two neighbours who met him regularly. Together, this may enable the ‘credibility’ and ‘persuasiveness’ (Abma et al. 2019; Guba and Lincoln 1989) of the narrative. However, its content and quality depend mostly on the auto-ethnographic reflections, for two reasons.

First of all, the reflections in this article illustrate how the stumbling search to respond adequately and susceptible to Harry was inextricably interwoven with the first author’s pre-reflexive tendencies, intuitions, senses, emotions, preferences, habits and (socio-cultural and academic) frames of reference. Hence, it was imperative to reflect critically on how his ‘total-bodily experience’ (Coffey 1999) as well as his personal background, cultural baggage and power position influenced the data collection and analysis (Madden 2010; Madison 2005). Secondly, since the first author was unable to engage with protagonist Harry in the verbal and cognitively oriented communicative exchanges that he felt most at ease with, he could not verify his and others’ observations and interpretations with Harry in an academically legitimate – verbal and cognitively oriented – way (member check). Therefore, these personal reflections on this matter are crucial for the quality of the presented narrative, in terms of ‘credibility’, ‘dependability’, ‘transferability’ and ‘catalytic validity’ (Abma et al. 2019; Guba and Lincoln 1989).

For the sake of credibility and dependability, the first author also discussed his observations on several occasions with Harry’s care givers and neighbours (triangulation), and with the second author (peer review, joint analyses). These attempts at dialogical interpretation were designed to foster awareness for everyone’s lens and concurring biases, and fuelled by a responsive-ethical desire to do right by all the persons involved (especially silenced voices) and to stimulate social transformation, thereby complying with authenticity criteria such as ‘fairness’ and ‘catalytic validity’ (Lincoln and Guba 1986).

Reflexivity and other research ethical considerations

Fairness and catalytic validity were not only used as quality criteria for sound responsive research, but also formed the main ingredients of a responsive-ethical attitude during the collecting, analysing and presenting of the issues of research participants.

In line with these principles, I (first author) tried to give voice to everyone involved, and to describe as detailed and ‘real’ as possible how they responded during encounters. However, my desire to give voice in a lively and authentic way was regularly at odds with other (methodological) values like anonymity and privacy, since detailed and ‘real’ representations of observations and experiences could easily lead to the revealing of the identity of participants, especially in small research settings. Thus, for a sustainable exchange about what was at stake for everyone in mutual encounters, we had to find a balance between pursuing fairness and authenticity, and respecting anonymity and privacy (cf. Kalsem 2019).

Furthermore, since my persistent attempts to give voice to people who could not speak (for themselves) stemmed from a normative-ethical position that every individual should have the right to have a say in decisions which affect their lives (cf. Reason and Bradbury 2006), these attempts and their legitimation needed to be reflected upon. What made critical (self-) reflection even more urgent, was that many encounters between people with severe or profound intellectual disabilities and me appeared to be eerie, confusing, frightening or even threatening for at least one of the persons involved, when I was not performing a caring or supporting role. Said encounters hardly stimulated any liberating insight into the perspectives of those people who could not speak (for themselves), but primarily confronted me with my pre-reflexive tendencies, prejudices, privileged position and responsibilities (Tronto 1993). In order to be able to critically reflect on these pre-reflexive tendencies, I kept a reflexive log wherein I carefully described and questioned my bodily responses and sensory perceptions during interactions. Also, I had many conversations with my supervisors, including the second author, to better understand those responses and experiences. This is in line with auto-ethnography, wherein personal responses are considered to be representative of cultural responses (Ellis 2004).

At the start of the PhD research, which was approved of by the executive boards and ethical committees of the care organizations involved, my formal role was participant observant. Rather soon it appeared that in residential care locations I was never the only one who decided about my position; what I could (not) do was largely determined by the routines and demands of residents and staff. Hence, I was often ‘pushed’ into a caring or supporting role, performing formal caring tasks such as assisting with eating and bathing, putting on coats, tying shoe laces, and walking with people in wheelchairs. I also spent many hours with residents sitting, listening, chatting, drinking coffee, enjoying their music, and looking at their photos – care activities of which many care professionals claimed they regretted that during the everyday hectic hours, they hardly found time for.

Although I enjoyed the majority of these interactions, I kept feeling ambiguous about the (limited) ways in which I was allowed to respond to the original residents of reversed integration settings. To what extent was my frequently assisting them caused by a care giver reflex, a pre-reflexive tendency that is embraced by many people without disabilities once they interact with someone with intellectual disabilities; a reflex that often enables them to evade an imminent uncomfortable encounter wherein they do not know how to respond otherwise? Was it not preferable (for an outsider) to interact in a less fixed, more horizontal, human-to-human way with the original residents? Or should I consider the aforementioned activities pre-eminent illustrations of human-to-human interaction, containing norms with which I, as an outsider and active member of our partly digitalized society, was hardly familiar with?

The felt ambiguity with regard to this seemingly sensible performing of a caring and supporting role undeniably entails questions about which values constituted my privileged, non-disabled position compared to the original residents. Although I am aware that it might be perceived as perverse and unjust to complain about loss from a position of power (Young 1997) and to idealize the position of a marginalized party (Waldenfels 1990/2013), from my academically encapsulated position, I frequently experienced a profound loss: a deep inability to relate adequately to persons like Harry, whom I considered as key research participants.

In line with this, engaging in reflection about my pre-reflexive tendencies, prejudices, privileged position and responsibilities in interactions with people like Harry, also demanded ‘ethical emotion work’ (Banks 2016, p. 8): an ongoing effort both to feel and manage (developing) emotions linked to being compassionate, emphatic, respecting, caring for and about others, responding to emotions of others, building trust and being ethically good. To complicate things, these feeling rules and norms are not always explicit, and may even be in conflict with one’s inner feelings (Banks 2013; cf. Hochschild 1983). Due to our care ethical approach, we considered it crucial to pay close attention to the complexity of emotions; grounded in the notion that good care (research) requires the embracing rather than glossing over of feelings (Zembylas, Bozalek, and Shefer 2014). Glossing over feelings implies a superficial engagement with the emotional complexities of living practices such as caring and research; what is required is a much deeper and emotionally challenging engagement that redefines our relationship with those practices. Thus, paying close attention to the other’s and my own emotions during encounters with people like Harry and making them explicit, would help us better understand what was at stake in those interactions (cf. Van Manen and Li 2002). Besides, in our conversations we found it was necessary to be reflexive about my needs for self-care – another important notion in care ethics. People involved in hands-on caregiving processes – like I was as a participating observant – can be so focused on the needs of others that they do not pay enough attention to making sure that their own needs are cared for (cf. Ellis 2004). Moreover, as pointed out, one’s inner feelings may conflict with explicit feeling rules and norms, and thus require careful consideration and nurturing.

Reflecting upon this, I realized vividly that I have a strong urge to feel connected to the people in my vicinity; I quickly feel miserable and unsafe if I do not feel noticed by them. Such a perceived lack of attention or recognition can make me feel utterly discouraged and inadequate. The opposite emanates when I share time and positive attention with others. I get this (much needed) feeling of personal acknowledgement in different ways, e.g. when someone is willing to consider my many questions, or when (s)he smiles at me or touches me to show (s)he appreciates my presence. In these moments I often experience a rush of shared understanding and comradery, or better yet: a shared pursuit of mutual understanding, wherein the will to search together appears to be the unifier.

My thinking about this has not yet come to an end. Before my fieldwork, I used to think that my feeling connected to someone was primarily dependent of shared characteristics – hence I was often looking for those during encounters with others. However, through interacting with so many people who could not speak (for themselves), I frequently experienced that I could also feel deeply connected in ‘a world without words’ (Goode 1994), despite all the uncomfortable and confusing otherness I perceived. In these moments, contact without words made me feel temporarily liberated from a clutter of thoughts, judgments, certainties and doubts. Experiencing such a thorough connectedness with people in whose company I usually perceived more differences than commonalities, in an unfamiliar (care) context and without the ability to apply my trusted verbal and cognitive weaponry, often touched me deeply – and time and again urged me to new reflection processes (Bos 2016).

Throughout this article, we will return to and elaborate on these auto-ethnographic reflections.

Setting

The data that is used to construct the narrative about encounters with Harry is collected in a residential area that, as a result of reversed integration policy, has gradually overtaken the majority of a 45 acres formerly sheltered institutional terrain for people with intellectual disabilities.

Between 1992 and 2008, the capacity of this area expanded with 108 private houses. By the end of the research project, in 2015, the resident ratio was approximately 2:1 − 430 residents with an intellectual disability and about 250 neighbours without intellectual disabilities. The 430 original residents are provided with care, support and daily activities based on labels ranging from mild to profound intellectual or multiple disabilities, as well as acquired brain damage. Many of them are also associated with challenging behaviour, autism or other psychiatric diagnoses.

The scenery of the residential area is lush and green, marked by old willow trees, impermeable copses, four large ponds and a few ditch-lined meadows. The nearest municipality is at 5 kilometres distance. The infrastructure between the six housing clusters in the area evokes associations with a holiday bungalow park (or a classical institutional terrain): the roads are narrow, winding, surrounded by bushes and trees and provided with many warning signs and area maps. There are no sidewalks and a speed limit of 10 km/h applies. The area offers some exclusive facilities for initial residents only: medical and dental care, speech therapy, a swimming pool and a restaurant. The other facilities – community centre, petting zoo, church and supermarket – are available for everyone, with and without disability.

In order to stimulate community integration, since 2009 a committee (with some new residents and care professionals) organizes annual collective activities, ranging from an Easter eggs search and a midsummer barbecue, to decorating a neighbourhood Christmas tree. However, residents with severe intellectual disabilities hardly ever participated. The same applied to everyday neighbourhood life: the vast majority of original residents did not engage in observable encounters with their new neighbours.

When Harry met …

Confusing, unsatisfactory encounters

The first time Harry and I (first author) met was in the summer of 2010, on the playground near his house. I remember this vividly, because to me this encounter was so rapidly and profoundly unsettling, that after about twenty seconds I felt an almost irresistible urge to push Harry back and run away.

Harry, in his forties, has a small, hunching posture, flat, greyish hair and remarkably blue eyes. Before we met, I had heard a few stories about him from his new neighbours. Apparently, in the residential area, Harry was well-known for the distinctive way in which he frequently initiated physically intimate contact with the people he met on the street: after establishing eye contact, he tended to approach them rapidly with an excited smile on his face, grab their hand or arm and give them a long, piercing look from very close range. While doing so, he never spoke a word. Instead, he tended to moan, grunt or make bark-like sounds.

That first time we met, Harry did all this – and I felt ambushed: my heart rate went up, I gasped and felt how my leg muscles contracted. While successfully resisting the urge to step back, I started to ask him questions, although I had heard that he could not talk back. A few moments after I started talking, Harry let go of my arm, looked the other way and retreated. The second and third time we met, enfolded in a similar way.

After these three disrupting, unsatisfactory encounters, I started to realize that my overwhelming feelings of confusion and discomfort did not so much concern Harry, as well as the fact that I felt deeply unable to respond adequately to him. I felt shaken and uncertain, because I did not know what Harry approached me for, why he approached me so obtrusively and (apparently) excited, nor how I should react to keep this unusual interaction going in a way that would please both of us.

When I asked Harry’s new neighbours about this, they told me they shared similar feelings of disturbance and doubt in their encounters with him. According to two of them, Albert and Varela, whom he met on a daily basis, the tendency to avoid this unpleasant sense of uncertainty led many neighbours to evade Harry in the street or to cut the encounters with him short.

Albert: ‘With some people it’s impossible to connect. Harry, for example, […] is someone who barely talks, but who can give others a deeply piercing look from a very close distance. Whenever he gets too intrusive, we simply say: “Harry, you’d better go to the community centre.” He always listens to that. But some people don’t know how to handle him’.

Varela: ‘The neighbourhood kids do know this too. They also say: “Harry, you’d better go to the community centre.” And then he goes’.

(neighbours without intellectual disability, conversation report 870082, p. 3)

To me, the uncomfortable, unfamiliar, overly physical and non-verbal way in which Harry expressed himself to others became more and more fascinating. What could he mean? And how could I respond more adequately? Was it really impossible to ‘connect’ with him? Despite my still easily evoked strong feelings of confusion and rejection, over the course of my fieldwork I tried to interact more frequently and for longer periods with Harry, in order to get to know him better. However, without the means of sharing words, I continued to feel unable to communicate with him meaningfully. As a result, our interactions remained rather brief, one minute at maximum. To make matters worse, over time, Harry seemed to lose interest in me more rapidly, as I kept struggling to connect with him and to get to know him better.

After one year of fieldwork, my initial tendency to run away had disappeared, but my confusion about the meaning of the extraordinary bodily character of our encounters was not diminished at all. In the context of everyday neighbourhood life, it seemed simply impossible to learn more about Harry’s behaviour, motives, issues and values, when he did not talk back to me. I did not have any clue on how to communicate with him in a meaningful and appropriate way.

Luckily, halfway the second year, I got the opportunity to spend more time around him: six consecutive days of participant observation in the residential petting zoo, where he participated in activities such as caring for, feeding and touching docile domestic animals. Those six days in the petting zoo – a comforting, activating and familiar environment, surrounded by people whom Harry was familiar with (some fellow clients, support staff and regular visiting neighbourhood children and mothers) – brought about an enriching and stimulating exchange of perspectives.

Enriching examples

First of all, in those six days in the petting zoo, no one ever asked Harry to go someplace else, no matter how physically close he came. Instead, whenever Harry grabbed their hand or arm, leaned against them, stared intensively and made his sounds, they either greeted him kindly, made a joke-like comment, or asked him if everything was okay. Although he never responded verbally to such utterings, both Harry and the other people in the petting zoo seemed to like interacting this way; throughout the week, he repeatedly approached them and received similar responses. Apart from these regular communicative initiatives, Harry mainly kept to himself. More often than not, he tended to withdraw to one of the sheds, under the canteen table, in the bushes or behind the hen house.

This first observation reminded me that interactions may still be mutually fulfilling when the people involved use communicative means that are incompatible at first glance.

Secondly, Gerald, the zookeeper, taught me the rich potential of an indirect approach. During his coordinating activities, the only person Gerald never approached directly was Harry. Not once he initiated an interaction by starting to talk or by making eye contact. Instead, Gerald circuitously tried to involve Harry actively only after he was sure that Harry was interested. In order to get his attention indirectly, he frequently tended to introduce a more or less puzzling object in Harry’s vicinity. One day for example, Gerald stood in front of the hen house with a thick piece of rope and a pair of scissors. This performance caught the attention of Harry, who was crouching in the bushes behind the hen house. Apparently, Gerald was trying to cut off a piece of rope, but he had to make a real effort because the scissor blades were rather blunt. While struggling to cut the rope, he made eye contact with Harry. Then, without saying anything, he stretched his arms in Harry’s direction, as to hand over the scissors and the rope. Harry jumped up, walked quickly in Gerald’s direction, grabbed the scissors and tried to cut through the rope. He also struggled for a while, then gave up, handed back the scissors, smiled briefly at Gerald and disappeared quickly behind the hen house again. ‘Almost’, Gerald mumbled, and went on with his round. Another time, when the zookeeper was talking to a visiting mother and child and Harry quietly tried to creep along, Gerald interrupted the mother to ask the child with an empathic tone of voice: ‘Do you want a piece of candy?’ Harry immediately froze and turned around, with an expecting look on his face. Gerald caught his eye and asked, quasi casually: ‘Do you also want a piece of candy, Harry?’ Quickly and with an enthusiastic grin, Harry approached. Gerald, the mother and child looked at him and laughed. Then, the four of them went together into the zoo canteen to get something sweet.

This second set of observations showed that it was possible to change positions in the interaction with Harry (from reactive to inviting) and to initiate longer lasting contact with him, by introducing something that interested him – not only without but also with words.

The third interaction that struck me started inside the small petting zoo canteen at lunch time, on the third day of my participant observation, between Harry and Adriane, his very agile and talkative 20-year old co-worker with an intellectual disability.

It is quite noisy in the small canteen. With eight people, all the seats are taken. While eating their sandwiches, most of the people present enjoy a lively group conversation. No one seems to pay attention to Harry, who hunches on a stool in the corner of the canteen. He seems nervous, his eyes go back and forth through the space and he rubs his hands. Although his open lunch box rests on his knees, he does not eat anything. Suddenly, Adriane walks up to him and gently puts her hand on his shoulder. Instantly, he starts staring at her, with a radiant and hopeful expression on his face. The hand rubbing intensifies. Then Adriane whispers to him: ‘Come on’. Immediately, Harry stands up, takes Adriane’s hand and huddles up to her. Adriane then gently puts her arm around his shoulders. In this intimate pose, they leave the canteen together, their lunch boxes in their hands. The others do not seem to have noticed anything out of the ordinary; their lively conversation continues. After a while, I quietly follow Adriane and Harry outside. They are sitting close to each other beside the pond, some twenty meters away from the zoo, eating in silence. Occasionally, one of them throws a piece of bread towards the squawking ducks.

(fieldnotes 27 January 2012, pp. 34–35)

Apparently, Adriane responded very adequately to Harry’s non-verbal demand. She adapted her (predominantly verbal) communication style to his essentially nonverbal, bodily way of expressing himself, in order to take control over the situation and to communicate with him in a receptive and meaningful manner.

Later on, when I asked Adriane to give her assessment of the situation, she said that Harry simply needed ‘less excitement’ in order to get to his lunch. To her, that was all there was to it. However, we can also learn that for this specific situation to occur, someone (i.e. Adriane) had to 1. renounce her predominantly verbal communication style, 2. touch Harry’s body and 3. let her body be touched by his. Furthermore, it was not only by her sensitive attuning to his essentially bodily interaction style, but also by her directing and joining him to a quieter place, that Harry was able to come to peace and to enjoy a shared lunch.

A changing perspective on responding

The three aforementioned interactions inspired me to think in new ways about responding to Harry, and about producing credible and transferable knowledge about encounters with him.

Foremost, what I had been observing in the petting zoo made me realize that, as an outsider, I had falsely presumed that Harry, because of his clear preference for non-verbal communication, 1. did not appreciate to be spoken to, 2. could not understand the meaning other people attached to spoken words and 3. was not able to attach meaning to verbal utterings himself. Nevertheless, the three examples in the petting zoo clearly show that the shared meaning making processes between Harry and the other participants were indeed partly verbal (i.e. joke-like comments, ‘Do you want a piece of candy?’ and ‘Come on’).

What remained unclear to me, however, was to what extend Harry could attach meanings to the words of others. Therefore I started to experiment a little with verbal sense making in my interactions with him. On the fourth day of my participant observation, I asked Harry twice to do something with an object – deliberately on different occasions, without looking at the object and without suggesting gestures or mimicry. First, I asked him to throw a plastic cup in the trash bin of the canteen; later on, in the yard, I asked him to pick up some withered branches. Both times, Harry responded adequately to my demand, without any visible doubts.

This outcome puzzled me again. If Harry was able – at least in the familiar context of the petting zoo – to respond adequately to merely verbal, random communication acts of a relative stranger, why did he in the majority of his everyday encounters with (familiar) others – both in the petting zoo and the residential area – seem hardly interested in what they said?

Recalling the three enriching examples, I came to realize that it was impossible to come any closer to appreciating why Harry interacted with other people in the (nonverbal and proximal) way he did, if I did not reflect on what these communication partners expressed towards him, by means of words and otherwise (cf. Watzlawick et al. 1967/2011). Hence, I compared what I had been doing in my two small verbal experiments to how Gerald, Adriane and the other people in the petting zoo responded to Harry. The main difference seemed to be that my responding to Harry primarily stemmed from a longing to find out what he did and did not understand, fuelled by an academic frame of reference, whereas theirs appeared to be driven by a desire to engage with him in a shared moment or activity.

Since nothing of which I had tried over the 18 previous months had yielded any more insight into Harry’s perspective, an inevitable – and fundamental – step I felt I had to take was to let go of my strong verbal, cognitive and rational orientation in the encounters with him. Suddenly, it seemed obvious that my discomfort, confusion and fascination in regard to the proximal, bodily and non-verbal way in which Harry responded to me was intertwined with my stubborn verbal attempts to apply familiar cognitive meaning making models to what happened in these encounters.

This relational insight prompted the reflexive question why I stuck so long with those verbal and cognitive frames of reference. A plausible answer is that I stayed so academically occupied in order to gain more control over the interactions and the physical distance between Harry and myself. Put differently: I applied verbality and cognition as weaponry to discharge his uncomfortable bodily way of relating to me, thereby defending my own weaknesses and insecurities. After all, encountering Harry constantly confronted me with two of my vulnerable sides. First, in general, I find it very unpleasant to be near someone without being able to share words, because I do not know how to navigate our positions and our responsibilities for the situation. As a result, I tend to feel eerie, clumsy and turned out. Engaging in verbal exchanges on the other hand, gives me a comfortable feeling of control over the situation and over the positions of the other and myself. The other weakness is that, compared to verbal interaction, nonverbal encounters make it much harder to shield myself from being overwhelmed – and eventually overtaken – by my receptiveness, intuitions and emotions. Sooner or later, this often results in an inability to think clearly, a lack of focus, loss of patience, sweats, or even palpitations. Without words, I cannot try to make something nicer or look at it differently, nor can I distance myself from a phenomenon or experience. Without words, no theories to interpret something or to gain more insight; no possibilities for a new perspective.

Therefore, if I did respond by expressing myself in ways I was good at, these two weaknesses would be exposed by Harry’s unfamiliar bodily approaches. And without verbal and cognitive weapons to defend my familiar take on the world, his impact on me appeared unfiltered, intense and devastating.

Reflecting upon this made me realize that if my ‘normal’, everyday way of relating to others had such a limiting impact on what could happen between Harry and me, I had to alter that way in order to create more space for encounter. Clearly, in this residential area I had passed (or: gotten away) with what I had been doing for the last 18 months; no one had told me to respond otherwise. But if I did not put down my verbal and cognitive weaponry, Harry and I could never relate to each other in a more mutual fulfilling way.

A silent, mutual satisfactory encounter

Acting upon this relational insight into what seemed to have happened in our encounters so far, the last two days in the petting zoo I tried to be less verbally and cognitively occupied and more receptive and vulnerable in interactions in Harry. In other words: I intended to respond more intuitively to him and to follow him, without the aim of catching him in one of my (academically nourished) frames of reference.

To my excitement, this ‘open’ and receptive attitude immediately and clearly extended the pattern in which Harry and I so far had been interacting with one another. This considerable change can best be illustrated by a completely wordless and fifteen minutes (!) long encounter that emanated near the goats’ pasture behind the petting zoo.

While making some photos of the jumpy goats, I suddenly notice Harry in the middle of the pasture, some 30 metres ahead. He is running around between the goats, making yelp-like sounds. As soon as he sees me, he hurries in my direction. I keep looking at him. Harry runs towards the fence that surrounds the pasture and leniently climbs over it. He grunts before he walks towards me, with an expecting expression on his face. I hold my tongue and look at him with a smile. With a grin from ear to ear, Harry grabs my arm and gives me one of his most piercing looks. I keep looking back at him with a smile. Like that, we stand in front of each other for about two minutes.

Although I feel a growing urge to say something – anything – I manage to keep silent.

When I cannot stand the awkwardness of this situation any longer, I knock on the wooden bench beside us and sit down. Harry immediately sits down next to me, with an excited expression on his face. When I look silently into the pasture in front of us, my sight is almost blinded by the sharp beam of the low winter sun. I squeeze my eyes, enjoying the brightness. Looking beside me, I see that Harry is also squeezing his eyes in the sunlight. After a while, he looks back at me, smiling. I return a smile. When I look into the pasture again, he does the same. And when I look back at him again, he acts likewise. We keep exchanging gazes and smiles, without words or sounds.

After a couple of minutes, Harry points towards two nosy goats near the fence in front of us. He winks at me, walks to the fence, and pets one of them. I follow him and pet the other goat. As soon as I do this, Harry looks at me with an euphoric smile. I smirk back at him, feeling deeply relieved and happy at the same time.

When the two goats start frolicking again, Harry and I return to the little bench. We sit down to enjoy the bright sunshine, the playful goats and each other’s company. In complete silence.

(fieldnotes 27 January 2012, pp. 38-39)

Reflecting on the narrative through a care and responsive ethical lens

Reading this micro-level narrative about what did (not) happen in encounters with Harry through the aforementioned epistemological lens, urges us also to reflect on the impact of otherness, power asymmetries and sensemaking in the broader context of inclusion and participation policies and practices. After all, the narrative illustrates the exclusionary potential of verbal and cognitive dominance through widely accepted, typical encounters in ‘purportedly public places’ in the mainstream (Cockain 2018), which may hinder the enticing potential of atypical relational, embodied, emotive and ‘pathic’ exchanges between people with and without intellectual disability (Van Manen and Li 2002; Waldenfels 2011a; cf. Bos 2016).

Experimental-relational spaces of encounter

Based on this insight, we argue that there is an urgent need to work on more experimental-relational spaces for trusting and daring encounters between marginalized people and people from the mainstream to happen – with regards to work, housing, community building, education, care and support. Such new social spaces are experimental, because none of the potential participants will know exactly, or know at all, what will happen – other than that e.g. strictly nonverbal encounters most likely will feel unfamiliar to some of us and might confront and confuse us. The uncomfortable otherness and alienation we might perceive in such instances will not necessarily be beautiful and enriching, but might also be difficult, frightening, threatening and painful (Bos 2016; Sibley, 1995 in Hall 2010). Thus, encountering people in the margins of our society involves certain risks and disharmony, that people from the mainstream need to be willing to accept (Clifford Simplican 2019a; 2019b; Clifford Simplican and Leader 2015).

In order to gain more public space for new encounters that might challenge the nerves and norms of people who are able to survive (or even succeed) in mainstream society, the spaces we advocate necessarily have a relational character as well. Their starting point is the acknowledgment that any confused, fascinated and/or evading response to the perception of the otherness of another person inevitably refers to ourselves in relation to this person: no one is ever strange on his own (Bos and Kal 2016; Meininger 2008; Waldenfels, 1990/2013). Recognizing this relational character of any perceived strangeness or alienation in interactions with unfamiliar and marginalized others is crucial, because this very insight might inspire an interpersonal quest for spaces of encounter which were so far unthought of.

From a care ethical perspective, we can see the promising emanation of such new social space between Harry and the first author as soon as the latter became aware of his own (armed) vulnerability (cf. Fisher and Tronto 1991; Tronto 1993). Through a self-reflexive stance, it became apparent that he had to give up his verbal and cognitive weaponry – which hitherto had helped him to conquer and defend a privileged position in mainstream society – in order to feel, know and appreciate how to spend (more) quiet time with Harry. This re-balancing act created a temporal and situational shift in power distribution, which allowed both Harry and the first author to give and receive affectionate attention, thereby enabling a sense of mutual recognition and interpersonal belonging (cf. Hall 2010).

This care ethical reading of the narrative might help to build a critical stance towards overly cognitive, verbal and rational societal norms and structures wherein people like Harry need to fit in’ – and thus need to adjust themselves – instead making their belonging also a matter of self-reflection for, and relation with, the verbally and cognitively oriented people whose positions and preferences dominate the encounter norms in contemporary societies. Such an experimental-relational approach seems pivotal to be able to do justice to people who appear alien to us, to recognize them in spite of their being out of our order (Meininger 2008, 2013; Foucault and Miskowiec 1986). For only if we are willing to be disrupted and changed by persons in the margins of our society – who might frighten us and threaten our norms, view of man and worldview – the dominance of what is perceived of as normal and abnormal in its mainstream may start to crumble.

Moral humility and a passible performance

The responsive ethics of phenomenologist Bernhard Waldenfels (2010) holds that, if we try to understand another person, we must recognize that his or her otherness is fundamentally unknowable to us. After all, as said before, for physical reasons as well as due to differences in life history, social position, experiences and habits, it is impossible to take someone else’s standpoint, to see and feel the world as s/he does (Waldenfels 2004, 2011a). Acknowledging this indisputable brokenness of our efforts to get to know the other, forces us into an ongoing rethinking and reflection – regarding these efforts as well as our viewing of the other. Hence, the insufficiency we experience when trying to do right by another person is the driving force behind a permanent searching, responsive-ethical attitude; a sting that keeps waking us from ‘the sleep of normalisation’ (Waldenfels 2010; cf. Irigaray 1974; Meininger 2007; Young 1997).

In this regard, political philosopher Iris Marion Young (1997, p. 350) stresses the importance of ‘moral humility’. From a morally humble position, we acknowledge that it is impossible to see the world through the eyes of another person, but we are nonetheless determined to gain more insight into the extent to which we share comparable experiences (cf. Kittay 2010; Woelders et al. 2018). After all, if we keep in mind that there will always be aspects of our communication partner and his/her situation that we will not understand we need probably attune more sensitively and reflexively to what emanates in interpersonal exchanges (cf. Mietola, Miettinen, and Vehmas 2017). Moral humility in responding to people in the margins of our society bears a strong resemblance with Lyotards work on ‘passible performances’: the pursuit to keep listening in a sincere manner and to postpone any kind of interpretation or judgement – despite our experiencing of reflexive tensions, discomfort and fear – based on a desire to remain uncertain (Lyotard 1983/1988, cf. Brons 2014). The primary target of passibility is ‘to uncover the pretentious, apparently closed and definite character of ‘normal’ practices as being premature and not tenable. The current norms and structures as applied and governed by (nondisabled) people in power are temporarily suspended, in order to find out whether or not they need a transformation or supplement’ (Bos and Kal 2016, 131; cf. Kal 2001).

In line with this, the experimental-relational spaces of encounter that we advocate in domains of care, research and everyday communal life emanate due to a searching, wondering and open-minded perseverance towards people who appear strange to us, intertwined with a determination to resist our tendencies to colonize, socialize or tame their confusing otherness with familiar words, frames of reference and images. This perseverance bears resemblance with conceptual work about ‘cultural humility’ (Tervalon and Murray-García 1998): ‘a lifelong commitment to self-evaluation and critique, to redressing […] power imbalances […], and to developing mutually beneficial and nonpaternalistic partnerships’ (idem, 1998, 117), ‘whereby the individual […] starts with an examination of her/his own beliefs and cultural identities’ (Yeager and Bauer-Wu 2013, 252) and ‘focus[es] on both self and other to formulate a tailored response’ (Foronda 2020; cf. Renders 2013).

Hence, precisely the inerasable differences between people from the mainstream and people from the margins of our society ought to be the starting point for anyone who thinks about and works towards more spaces for horizontal interactions. The core of these relational spaces for new encounters might be in staying with the other despite not knowing exactly, or not knowing at all, what s/he means; for instance, through attentive watching, listening, touching, sensing, smiling, playing, joking or through involving a goat – without (too much) verbal content (Bos and Kal 2016). Such a receptive, humble and passible way of responding to otherness is bound to teach us many confusing and surprising things, not just about people with severe intellectual and/or multiple disabilities, their lifeworlds and the ways in which they shape their lives in interactions with others (Goode 1994), but primarily about ourselves in relation to them (Meininger 2008; Waldenfels 2011b).

The question that remains is to what extent we – people who are able to survive (or even succeed) in mainstream society, and to hold a powerful position in settings such as academia, education, (local) governments, community building and care organizations – are able and willing to give up some of our position of power for marginalized others to be able to co-determine what emanates in more mutual fulfilling encounters.

Disclosure statement

No potential conflict of interest was reported by the authors.