Making spaces in exclusionary places: the spatial tactics/stories of disabled people and their families in Hong Kong

Abstract

This article reports on an exploratory qualitative research project conducted in Hong Kong. This investigated accounts of place-based exclusions, especially focusing upon the tactics disabled people and their families deploy to cope with exclusionary places and practice. I elaborate upon three thematic clusters emerging from group interviews. The first addresses place-oriented decision making. The second explores the emotional geographies that specific socio-spatial orders register and generate. Finally, I assess how far participants’ spatial tactics and stories may be regarded as either subversive or transformative. While participants’ practice often maintains disabling geographies, their spatial tactics also ‘speaks’ against congratulatory accounts of social inclusion. However, participants’ accounts of harrowing place-based discriminations register the extent and magnitude of barriers which combine to constitute the disabling conditions in which their spatial tactics/stories take place.

Points of interest

• This article documents the place-based exclusions and discriminations disabled persons and their families routinely experience in Hong Kong.

• This article explores the decisions participants made about where to go and not go; the feelings that they and others experienced in place; and the ways they tried to realise inclusive lives in places which often seemed to exclude them.

• The disabled persons and their families who participated in this study experienced many strains and stresses in public places.

• Participants also described their feelings, and those they try to bring about in others, in public places.

• Participants not only cope with exclusions but also sometimes try to transform exclusionary places.

Keywords:

• Hong Kong
• geographies of disability
• spatial tactics
• spatial stories
• emotional geographies
• place-work

Introduction

The barriers and exclusions disabled people and their families routinely encounter have been documented in disability studies literature (Imrie 1996, vii–26) and research into ‘geographies of disability’ (Gleeson 1999; Castrodale and Crooks 2010). These accounts provide powerful and often disturbing insights into socio-spatial experiences of disability and processes of disablement (Cockain 2014; Cockain 2018a). Research has also demonstrated how space is both a ‘container and shaper of social processes’ (Laws 1994, 21), highlighting how social relations are constituted by, in and through space (Imrie 1996, 12; Cockain 2021a). Emerging from such studies is a relational model which attends to how places, bodies and social relations intersect to produce disability (Hall and Wilton 2016). Writers also acknowledge how disabled persons cultivate ‘safe havens’ (Hall 2010) through ‘place-work’, namely ‘real, on-the-ground … work … to create more inclusive lives in the community’, albeit while remaining ‘cognisant of the … role … spaces and places play in … shaping experiences’ (Power and Bartlett 2018, 563, emphasis added).

Research in Hong Kong and other Chinese societies has also documented exclusions and barriers (Cockain 2021b). Central to these accounts are shame and stigma (Gilson and Dymond 2011). Traces of medical model discourse and traditional cultural constructions of disability persist in official and unofficial discourse (Cockain 2018b). This is despite that Hong Kong is a signatory of the United Nations Convention on the Rights of Persons with Disabilities (hereafter, UNCRPD). One of the eight guiding principles of this human rights treaty is to realise: ‘Full and effective participation and inclusion in society’ (United Nations 2006, 5). Research in mainland China, meanwhile, has identified how the families of people with autism and intellectual impairments deploy tactics to cope with stigma and exclusion (Wang, Michaels, and Day 2011).

It is in this context that this article explores how disabled people in Hong Kong with intimate experiences of exclusion and disablement experience and tactically navigate barriers in exclusionary places. In this article, the term ‘disabled people’ encompasses people with manifold impairments and those whose lives they enmesh with through kinship ties. This expansive term indexes how marginalisation and exclusion spread between people through ‘courtesy stigma’ (Goffman 1963, 30–31) and affiliate stigma which seep into place, disabling persons therein. Despite this general use, I do not want inadvertently to present ‘all disabled people as a homogeneous group’ (Mallett and Runswick-Cole 2014, 126). Therefore, I try to identify participants by signifiers like name, role (or position), and impairment. Participants’ tactics are distinct from strategies which are the operations of those with power. Strategies are practiced by the masters of space. Tactics, by contrast, as De Certeau explains, are the sometimes-subversive responses of dominated subjects which operate upon the terrain of the dominating (1984, 18), albeit and crucially without taking it over. Tactics play ‘out in sequences of time where opportunities are “gently” seized’, in ways that work, or make do, with ‘events’ and turn them into ‘resources and opportunities’ (Rasmussen 2014, 58).

More specifically, this article first elucidates upon methodological and ethical matters before elaborating upon the qualities of the exclusionary landscapes which participants described. Then, I explore three sets of thematic clusters emerging from group interviews. The first addresses place-oriented decision making. The second explores the emotional geographies specific socio-spatial orders register and generate. The third assesses how far participants’ spatial tactics and stories may be regarded as either subversive or transformative. While spatial tactics both maintain and challenge disabling geographies, this article regards the commentary participants produce as spatial stories with transformative potential. As de Certeau explains, stories ‘carry out a labor’ (1984, 118). These speak against congratulatory accounts of social inclusion and, as the title of this article registers, make space—both literally and metaphorically—in exclusionary places. While space is abstract, general, and conceptual, place, by contrast, is concrete, and refers to specific, extant, locations. Nevertheless, human tactics of placemaking and ‘place work’ (Power and Bartlett 2018, 563) make space become place.

Methodology matters

This article reports on an exploratory qualitative research project conducted in Hong Kong. I particularly draw upon commentary produced during three phases of group interviews. These were conducted in May, August, and November 2019 with five sets of participants. Each group included between 3 and 5 members, all of whom I refer to pseudonymously. The groups were arranged to include people already familiar with each other because of the potentially sensitive and disturbing nature of the issues and experiences we intended to explore. Participants included people with physical impairments; people with histories of psychiatric illness; parents, and siblings of people with autism and learning impairments. However, not all participants appear in this article. Conspicuously absent are four people with learning difficulties who constituted one of the five groups. Their exclusion was initially a consequence of the methodological limitations of interviews which limit access to persons able to communicate through orthodox language in ways which may, therefore, silence autistic people (Milton 2012). Subsequent unrest during autumn 2019 and the Covid-19 Pandemic in 2020 combined to thwart my intention of arranging follow-up meetings to give these participants cameras to document their spatial experiences, although I still hope to do this.

Prior to the first interview, participants’ consent was obtained through an accessible form written in Chinese and English. This explained the scope and intentions of the research and gave participants the right to withdraw from the project at any time. Interviews began with participants providing biographical information and subsequently focused upon participants’ experiences of exclusion and inclusion. Interviews also explored the daily challenges and discriminations participants encountered; their ways of coping with these; their identifications of welcoming and unwelcoming places and their suggestions for how encounters, and places, might be more enabling. Each interview lasted approximately two hours. WhatsApp groups were also set up with each group. These provided often taken up opportunities for sharing thoughts, ideas, and photographs between face-to-face meetings.

Interviews were predominantly conducted in Cantonese and to a lesser extent Mandarin and English. My former colleague Jenny Hui Lo Man-Chun helped to facilitate these. I am grateful for her support not only coordinating interviews but also recruiting participants. Some participants were already known to Jenny by virtue of her role in a local society promoting rehabilitation services. Others responded to a ‘call for participants’ I sent to various groups in Hong Kong. One participant studied at the university in which I taught while conducting the research. Interviews took place in a quiet and accessible area of campus and were recorded using an application on my mobile phone. Interviews were later transcribed to register the ‘original’ sounds and an English translation.

Although I made reflective notes during and immediately after interviews, formal analysis was conducted after a transcript was produced. Initially transcripts were made subject to in vivo, verbatim, coding. This highlighted the actual words and phrases participants used. Then, I identified key themes and, later, thematic clusters, paying attention to semantic and latent themes. Semantic codes at the surface of the ‘data’ built upon what participants said while latent codes went beyond what was said and explore ‘underlying ideas’ and ‘assumptions’ (Braun and Clarke 2006, 84).

Even though the project to which this article refers received ethical approval from the Human Subjects Ethics Sub-Committee of my university department, I was still troubled when participants disclosed painful experiences, often while either crying or seeming visibly distressed. In such instances, Jenny, I, and other participants attempted to comfort them. Such discomfort compelled me to question the value of this project. However, and crucially, participants were eager to ‘be heard’, and suggested I may be a conduit for their experiences, feelings, and perspectives. To some extent, I justify the emotional costs participants may have experienced with reference to such discourse.

An additional potentially dangerous corollary of the publication of this research is that it may, unintentionally, produce the erroneous notion that disabling attitudes exist ‘out there’ rather than ‘here’, for readers positioned in places like the United Kingdom. This may, more specifically, facilitate projection and denial. It is, therefore, vital to signpost the voluminous literature which documents how stigma and discrimination persist in contexts like the United Kingdom even though legislation (e.g. The Equality Act, 2010) purportedly protects the rights of disabled people (e.g. Scior and Werner 2016).

Exclusionary landscapes

Participants described how material and attitudinal barriers combined to produce experientially distressing disabling geographies, or exclusionary landscapes. For example, Fung-Yi, who uses a wheelchair, acknowledged how limited space in places like changing rooms in clothes shops and restaurants restricted her routine practice. Nevertheless, limiting her more were what she called the ‘subtle discriminations’ she regularly encountered like the ‘grumbling’ of people like bus drivers and retail staff.

Sometimes exclusionary discourse was especially violent. For example, Yim-Wah, whose daughter is autistic, recounted witnessing a care worker taking a teenage student to the toilet while swearing at her. ‘“You piece of shit”, the woman said to the student. “What’s the point in bringing you into this world?” She continued going on like this for what seemed like forever’. Yim-Wah also described how teachers called a student with learning difficulties an ‘idiot’ in front of other care workers although they would seem ‘friendly in front of parents’. Yim-Wah worried her daughter would experience reprisals were she to complain. ‘I fear revenge’, she said, ‘especially when I’m not there’. These suspicions were, she suggested, real rather than imagined, and based upon stories other parents had shared with her.

Lai-Lan who uses a wheelchair also described exclusions on buses, particularly voiced by bus drivers when she travelled during peak hours to arrive at her workplace in a timely manner. ‘“You should travel another time”, they say’, Lai-Lan explained, unable to apprehend she had a job. Yuk-Wah, meanwhile, described how her autistic son was ‘cursed with dirty words’ in spaces like playgrounds. Yuen-Mei, whose autistic daughter is in her early-20s, described how her daughter had been subject to beatings when at school. Because people like teachers subsequently interpreted these events in which Yuen-Mei’s daughter had been beaten through the verbal constructions of the more linguistically competent ‘other’, Yuen-Mei’s daughter was often punished and labelled as the apparent culprit rather than the other people involved. This often compelled her daughter to respond either angrily or by ‘taking her clothes off’. Yuen-Mei explained this communicated rage, frustration, protest and likely a combination thereof. However, within the school, the motivations and meanings of such practice were reduced to a more simplistic story, or narrative, namely that Yuen-Mei’s daughter was blameworthy in instances of conflict. Significantly, this interpretation came to justify subsequent exclusions.

For participants with histories of mental illness, discriminations spread between family members and colleagues, as Win-Hong explained:

‘When my family take me to the doctor, they see me as a relative. But when they talk to colleagues, they say “I have to take special care of my husband because he’s mentally ill”. After that, colleagues spread the word, so I have no respect in front of my wife’s colleagues’.

These colleagues, later, pleaded with Win-Hong’s wife to leave him. ‘“Let him go”, they told her. They said she could then occupy our house herself and attend more social gatherings with them’.

Shuk-Wai described how after she had been diagnosed with a psychiatric disorder, her brother demanded their parents ‘kick her out onto the street’ saying ‘I had no right to live there any longer’.

Autistic participants and their families were also directly and indirectly removed regularly from place. For example, when Man-Yee took her autistic son to a classical music concert, his initial absorption gave way to ‘yelling’. The entreaties of security guards obliged them to leave. However, on another occasion when she had not been present at a school event, her son was physically ‘carried away’, in the sense of being removed. This conspired to increase his resistance, thereby producing a disturbing scene.

The exclusionary practice and discourse in schools was often more indirect, as Yuen-Mei explained about the school with a religious ethos her autistic daughter had attended:

‘If there’s a problem, they’ll say the place doesn’t suit you. Go elsewhere! They love to send you away. They don’t care if another place is suitable or not. I was told “God loves everyone”. But I said to the school, “why don’t you love us?”’

Disabling geographies were also constituted by cultural discourse, especially the identification of impairment with ‘wrongdoings’ in previous lives. ‘Some say disability is karma. People must have done something in a past life’, explained Chi-Ho. Although Chi-Ho conceded this was long ago, participants made numerous references to this kind of discourse. This suggests cultural stigma persists, contributing to the normative, taken-for-granted, order of things which places and place-based practice both reflect and generate.

Significantly, disabling geographies were not merely ‘outside’ but extended ‘inside’ people through forms of internalised ableism and psychoemotional forms of disablism (Thomas 2007, 72), all of which exemplify interconnectedness, or enmeshment, between people and environments. This manifest in self-blaming discourse. ‘Maybe I am a burden’, said Win-Hong, ‘maybe her [his wife’s] colleagues are right’.

Decision-making, or to go or not to go and if so, how

Regarding decision-making, namely processes ‘whereby alternative courses of action are evaluated’, and decisions made (Smith 2009, 144), participants’ commentary repeatedly indexed absenting, rationing, and zoning.

Absenting and rationing

In addition to being forcibly removed from place, participants also practiced agentive, or willful, forms of absenting, namely either withdrawing or remaining away from specific places. Such practice may register and reproduce place-based ideologies. It is, nevertheless, tactical by virtue of how it seems intent upon contriving space amidst places authored and occupied by more powerful others. Agentive absenting may be regarded as a spectrum comprising permanent and partial forms and may be reactive and preemptive. In its more permanent forms, absenting may resemble what Goffman calls ‘concealment’ (1963, 100). This practice, as Barnes and Mercer explain of such withdrawal, ‘entails removal from social activities with “normals” altogether’ (2010, 48, emphasis added). Participants expressed their tendencies to withdraw permanently in many ways although their sentiments may be expressed in shorthand as ‘I would never go there’. Especially avoided were forms of public transport and taxis. Ho-Man, for example, who has five children, one of whom is a 20-year-old autistic man, said ‘I don’t dare try public transport, so we bought a car a long time ago. I also avoid many places, to ease stress.’ Shuk-Wai moved job due to stigmatizing workplace discourse. Yuk-Wah, meanwhile, even moved home because of the discriminatory discourse of neighbours.

Participants also rationed their presence in space. For example, Lai-Lan and Fung-Yi, both of whom use wheelchairs, explained how they limited their usage of buses by, for example, conceding only to use them at certain times of the day. These were moments that they had come to understand would be less likely to make them subject to stigmatizing and exclusionary discourse. Ho-Man, meanwhile, explained how they ensured their presence in such spaces as restaurants was fleeting:

‘After we finish eating, we leave immediately. We’re afraid of a possible outburst. We can’t risk it. Once I spot my son might lose control, I’ll immediately say to my husband “go with him, we’ll pay and join you afterward”’.

Decisions made about absenting (or not absenting) seemed to produce dilemmas, double binds and anxieties as Wai-Yan, whose autistic daughter explained:

‘I have two choices. One is to escape. The other is to stay. We can’t escape all the time. I don’t want to hide myself although I must sometimes. I understand people who discriminate. They don’t understand’.

Despite having agentive qualities, absenting contributes to what Sibley calls the ‘purification’ of space (1988) by removing disabled presence from space in ways that may maintain and perhaps even reinforce disabling geographies. However, participants were more concerned with ‘making do’ (De Certeau 1984, 29) in and with exclusionary landscapes rather than trying to change them.

Zoning

Zoning which denotes ‘the ways in which … people navigate and organise … domains’ (Lincoln 2015, 93) may inform how we read participants’ spatial practice. First, participants produced inclusionary zones by contriving space within actual public and private places. However, the term inclusionary bubbles may better encapsulate their ostensible invisibility to people outside them as well as their precarity and fragility. These bubbles enabled participants and their families to occupy space either while seeming or feeling they were not there. The bubbles, meanwhile, provided protection, or a buffer, from stigmatizing gazes, diluting their potency. Participants oriented, for example, toward restaurants where it was possible to occupy a private space, often a separate room cordoned off from the restaurant’s main eating area. Such tendencies did not seem to engender ambivalence, perhaps because such spatial tactics are common and perhaps even ‘normal’ in Chinese eating cultures where larger, sometimes family, groupings often seek—and may even be partly obliged—to book a ‘private’ room in advance to insulate the rest of the restaurant from the potentially noise of excited, and excitable, speech.

Yim-Wah, whose daughter is positioned on the autistic spectrum, was especially sensitive to, and pained by, the stigmatizing gazes to which her daughter was subject in places like playgrounds. She described these as manifesting when her daughter wanted to use a swing. Swings are precious, and much queued for, amenities in Hong Kong by virtue of their relative scarcity and apparent desirability. Despite being aware of the gazes of others, she was cognisant of the enjoyment and benefit her daughter appeared to derive while and after moving up and down on a swing. She was, therefore, eager not to curtail such practice. Yim-Wah, consequently, built a swing-like contraption in her living room, of which she was evidently proud, and which also displayed resourceful spatial practice, seemingly cultivated as a response to her experiences of disabling geographies. In the photograph Yim-Wah shared with me, her daughter looks calm, relaxed and content as indeed Yim-Wah had said her daughter was while swinging up and down, and back-and-forth—movements which, like tendencies not to want to go out, are sometimes associated with autistic spectrum conditions. Yim-Wah insisted that this domestic swing did not mean her daughter would not use a public swing, in ways that might make the home swing symptomatic of absenting practice. The domestic swing was, instead, not only an additional extra that could, for example, be used in circumstances when factors inside and outside her daughter conspired to make gravitation toward a public swing unappealing and perhaps even impossible. She conceded this swing might be more necessary in future because her daughter would soon exceed the normative age limits for ‘normal’ swing usage. The home swing enabled her daughter to extend satisfying practice outside stigmatising gazes, albeit repositioned to a zone within the home.

Participants even seem to produce virtual zones through narrative forged about ostensibly passive practices like staying at home. ‘He doesn’t really enjoy going out,’ said Ho-Man of her son. ‘Maybe it’s because of the weather. I don’t like to go out either. It’s too sunny, too cold, or too humid. Staying home is better. My son feels comfortable there’.

Participants also bracketed out bad place-based experiences in ways that, as Klein observes of ‘splitting’ (1975, 468), allow the good object not to be contaminated by the purportedly bad object. Splitting does not produce an accurate map but, instead, ‘involves a distortion, a fragmentation of thought and experience, whereby the object of perception [i.e. in the context of this article, not only space in a general sense but also particular places] is experienced as split into a good and bad object which are absolutely separate yet antagonistically bound’ (Born 1998, 374). Participants’ splitting allowed some spatial zones to remain usable and inhabitable while bad feelings were projected upon ‘bad’ spaces.

Splitting was applied to ‘old’ and ‘new’ restaurants. When Ho-Man made decisions regarding place-based practice (i.e. when to absent and when to be present), she contemplated time (e.g. choosing to be present during times when certain places were ‘less crowded’) and location (e.g. gravitating toward places, like restaurants, where her son was ‘known already’). Her tendency to avoid ‘new’ restaurants was, she explained, because of the unwanted attention she and her son attracted there while ‘old’ and familiar restaurants were regarded more positively:

‘For new restaurants, we need time to adjust. We do try them but it’s almost certain we’ll attract attention. People will stare at us strangely. People look when my son makes noises. They turn and stare. Some keep turning. Others try to do so subtly.’

Zones, or bubbles, were also actively, and agentively, produced and maintained by people with similar experiences of stigmatization and discrimination in place. These zones resemble definitions of community which signify belonging, sharing, and mutual support. Participants belonged to several organizations, or groups, which were apart from offices and homes: places where some participants felt they had been subject to stigmatizing practice. Participants who had histories of mental illness and hospitalization joined with others in a psychiatric rehabilitation association for people in recovery from mental illnesses. These relations extended beyond the material space of the non-governmental organization into spaces like chat groups in WhatsApp and informal gatherings in restaurants. On one hand, these were zones of humor in which participants laughed at the stigmatizing practice to which they were subject and dwelled upon the absurdity of the situations in which they were routinely implicated. For example, participants had a travel card which made a different sound to those held by ‘the normals’. This enabled them to travel at concessionary rates. In real time and space, the different sound from their card sometimes led to violent altercations and instances in which they were accused by people like transport staff and passengers of faking their impairment (to travel at a reduced fare) and coerced into showing their illness. Participants narrated harrowing scenarios which demonstrate how the past may come back to ‘haunt’ participants, as Goffman observes of ex-patients (1961). However, when narrated and co-narrated amongst each other within these zones, or ‘safe havens’, they were subject to laughter. In such moments, the apparently traumatic qualities of participants’ place-based experiences drained away, if only perhaps momentarily. Such zones also enabled sharing of information about practical matters like events, classes, and support, especially during moments of profound sadness such as when one member of the group’s mother died.

Such zones were not only independently authored, or contrived, but crafted with others, like people working in shops and restaurants who participants claimed were ‘friendly’. These zones form and function like those teams to which Goffman refers (1959, 77). A team, as Goffman explains, comprises persons who unite, and cooperate, ‘in staging a … routine’ (1959, 79). As Yuk-Wah explained of a restaurant she regularly frequented, ‘the staff have known my son since he was a kid. They know the environment I need’.

Emotional geographies, or landscapes of affect

A second thematic cluster relates to emotional geographies, namely ‘the multiple ways in which different emotions emerge from, and re-produce, specific socio-spatial orders’ (Anderson 2009, 187, emphasis added). Such emotions constitute relations that make geographies of place (Davidson, Bondi, and Smith 2005) and create energies, moods, atmospheres, and landscapes of affect.

Participants’ commentary often indexed emotions like sadness, distress, anxiety, pain, frustration, anger, shame, fear, and regret. These emotions combined with one another. Yim-Wah, for example, described feelings of ‘shame’ when her daughter screamed on a bus and anxieties because she did not know how to manage this. ‘I felt ashamed’, she said. ‘It was so hard for me to accept. I went home distressed’.

While emotions were sometimes expressed in place, participants frequently reworked these emotions through practices that may be regarded as forms of emotional labour and emotion work. Although Hochschild deployed emotional labor to refer to work people do to regulate emotions, thereby creating a publicly visible facial and bodily display within the workplace (1983 [2012]), the term has been extended to other social situations requiring and perhaps even obliging people to express emotions they do not genuinely feel. Emotional labour, which is sold for a wage in the workplace, and emotional work—a non-wage-earning equivalent produced in private or non-commercial milieu (Hochschild 1979 [2012] , ix)—may refer to expressing unfelt positivity (e.g. by smiling) and suppressing negative emotions (e.g. anger). Hochschild distinguishes between surface and deep acting, namely changes to outward appearance while keeping actual feelings intact and deliberately attempting to alter real feelings.

Participants’ modifications constitute a spectrum from emotional working on one end and caricaturing, or mimicry, on the other with the ongoing, processual qualities of these practices discussed below.

Emotional working

Participants’ emotional working was conducted upon their own emotions through processes like developing a thick skin, blanking out, or what psychoanalysts call ‘motivated forgetting’, and forms of narrativization. For example, siblings and parents of autistic people with learning difficulties articulated struggles, in ways which seemed to exemplify the power of narrative to produce order from experience. ‘I have many challenges’, Sau-Lan explained. ‘But my sister isn’t a burden. She has rights. She’s a human. I decided to overcome the fear inside me’. ‘I’m struggling too’, confessed Ho-Man immediately after Sau-Lan. ‘Sometimes when I look at my son, I feel regret. I regret I must deprive him of things’, before re-constructing problematic experiences in the past as productive and positive in the present. ‘I’m grateful’, she said. ‘You learn to appreciate the good by going through hard times’.

Participants also practiced emotional working on the feelings of others. Ho-Man seemed intent upon ‘helping’ people like onlookers orient themselves to herself and her autistic son in ways that would either avoid or alleviate embarrassment. For example, her practice allowed people to re-channel their initial emotions into other forms while, simultaneously, managing not only her son’s emotions but also choreographing her own emotional performance and practice. She described how, for example, she would talk to her son in ways that helped his autistic symptoms announce themselves unambiguously to people who may otherwise be confused and consequently produce inadvertently discriminatory practice. ‘I’ll speak to my son. “Calm down”, I’ll say. “Food will come soon. Let’s wait patiently”. By hearing us, I guess people will know I’m dealing with a child who has a certain issue.’ Such practice, projected toward the ‘outside’ functioned simultaneously with work done to her son and herself. She tried to suppress previously described emotions suggestive of anxiety and to put on a ‘front’ or ‘face’ that acquiesced with the prevailing place-based norms and discourses, rather than confront them. These were intended to defuse tensions, whether real, imagined, or exaggerated, before they manifest. ‘I talk to let people hear us before things get worse’, Ho-Man explained.

Participants’ emotional working on others often produced amusement, affability, and apologies, in ways that echo the work disabled people are described as doing elsewhere (Garland-Thomson 1997, 13). Chih-Yun was especially disturbed by the gazes of others. To cope, she deployed humour, albeit of a seemingly pained and world-weary kind as may be apt of the commentary she produced about the supermarket queues she and her son would join, only to find nobody would line up behind them. ‘I will mock myself to reassure myself. I will say “son, why is nobody lining up behind us?” “Ha”, I’ll say. “It’s comfortable. Nobody is following us. We have space”’.

Sometimes apologies and humour positively transformed encounters. This was evident in Ho-Man’s account. ‘After I apologise and tell people my son “has issues”, people will understand. They’ll say it is fine. Some even become helpful. I’ve learned to become more skillful’, she concluded before, subsequently, referring to her deployment of humour. Ho-Man distinguished her own indirect, and perhaps even light-hearted, place-based practice from that of a friend who she said ‘challenged head on people’s offensive looks’. Ho-Man, by contrast, had learned to understand people’s ‘confusion’ and to see herself as an educator who ‘taught’ through humour. ‘Once I was filling my car with petrol. We heard a “woof-woof” noise. I knew it was my son. The staff looked confused. “Is that a dog?” the man asked. “No, it’s my son”, I said to which the man replied, “how interesting” and a conversation ensued in which the man disclosed he had an autistic relative. Such emotional working could shape emotions outside and inside participants. ‘My friend who has an autistic son is always unhappy’, explained Yuk-Wah. ‘She always confronts people. I just laugh things off. You know people are just curious.’

Lai-Lan, meanwhile, described aggressive bus drivers and the exclusionary discourse they routinely produced when she tried to get onto the bus, a process requiring the driver to lower a ramp. ‘You know, I think I get used to this’, she explained while elucidating upon her parents’ discomfort at such exclusionary discourse when they accompanied her. This increased Lai-Lan’s stress, making her prefer travelling alone rather than with them. ‘You know, I hear people every day. I really don’t care’, she said before explaining how her emotional working could transform potentially troubling situations. ‘I try to be very friendly’, she said. ‘You know, very, very, very nice. I smile to bus drivers even when they don’t look at me. I’m so polite. I recognise the extra work they do to lower the ramp. I’ll talk them through the steps [in the process]’. Lai-Lan cited a friend who said ‘“when you get on the bus, the driver’s face is cold but when you get off, he’s smiling”. You know it takes time to melt the heart of a bus driver. My friend says I’m faking it, but you know when I get off, he’s smiling!’

Apologies did not always produce satisfactory outcomes as Chih-Yun indicated of events in which her 30-year-old autistic son had been implicated. Chih-Yun explained how her son would often ‘jump up and down and swing his hands’, actions that made residents in the compound where they live ‘step out of the way’ when they saw him approaching. Chih-Yun described how once he touched an elderly lady’s back. Chih-Yun immediately apologised, disclosing her son’s learning difficulties. ‘“So what!” the lady replied before shouting at us for a long time. “You should not take this kind of person out. He’s aggressive. You should keep him at home”’. Despite seeming disturbed by her recollection of events, Chih-Yun saw matters from the perspective of others. This indicates the complexity of her emotional working. ‘Wouldn’t you walk away if you witnessed violence?’ she asked rhetorically when explaining instances when her son required restraint in public places. ‘Discrimination happens a lot’, she said, ‘but I can’t blame them if they’re scared’. Similarly, when Yuen-Mei’s daughter inadvertently touched the shirt of a man on the metro, he roared at her ‘I’ll slash you!’ This left Yuen-Mei in tears. Her narrative, nevertheless, still displayed flickers of empathy. ‘I can’t blame them. They are trying to protect themselves’.

Emotional working required participants not only to put on a ‘face’ themselves but also consider, and attempt to manage, those of onlookers and their own family members who were, in Lai-Lan’s case, more disturbed than she was. This exemplifies the profound strain and stress participants experience in purportedly public places. Man-Yee succinctly explained the impact of trying to manage her own emotions, those of her son and those of onlookers, saying that she felt like she ‘was walking on a tightrope’. This figure of speech may index feelings of precariousness, jeopardy and, perhaps even being on display.

Further complicating participants’ emotional working was its obliged, perhaps even coerced, qualities. This was evident when Ching-Ying, who had experiences of mental illness, was persistently encouraged to ‘fit’ her emotions within the emotional contours of ‘normal’ society. ‘If I’m unhappy’, she said, ‘they tell me: “Don’t be unhappy. Just smile. Be positive”’. Pik-Kwan spoke similarly of being encouraged to hide her ‘true’ feelings. ‘If I’m crying, my family will say “don’t cry”. But I want to cry. I want them to say, “just cry and you’ll feel better”’.

Participants’ emotional working may, on one hand, index passivity and self-deprecating tendencies which conspire to maintain the ableist/disablist norms circulating in place. Nevertheless, participants’ tactics may also demonstrate agency and creativity as they ‘take up’ abled norms in ways that enable them to follow their own ends. For participants, apologies may, for example, be means through which participants outwardly conform to the norms of an ableist society while not necessarily agreeing with them. Crucially, this appearance permitted them to remain there, hiding in plain sight, albeit on the margin, or periphery, of places like restaurants: maintaining space within disabling places.

The harmony which emerges through such spatial practice is, crucially, largely produced by the relentless domestic labour of people like Man-Yee. Put differently, place-based ‘harmony’ is simulated and accomplished between impaired-unimpaired people in public places through the ongoing and ostensibly mundane actions and inactions of disabled people and their families. This builds bonds between impaired and unimpaired people, albeit of a kind which is forged upon simulations, constructed, and choreographed by disabled people and their families who perform other than how they ‘really’ feel.

Caricaturing, or mimicry

In an especially disturbing account, Pik-Kwan, who has been repeatedly hospitalized since being diagnosed with bipolar disorder while at secondary school, described her experiences of hospitalization in a local psychiatric ward. Pik-Kwan described how the restricted routines and regulations in the hospital made her feel like a ‘prisoner’. In a similarly troubling account, Lai-Lan described the violence to which she was subject when hospitalized for her biannual ventilation check. She was subject to frequent complaints from people like nurses (for her inability to walk), unfriendliness and hostility. Even ostensibly well-meaning ancillary staff in the hospital produced troubling discourse. ‘“You’re so young and yet you’re paralyzed. What are you going to do with your life? Your poor mother’, Lai-Lan recounted being told on the ward one day. She was also constantly compelled to announce her impairment and to apologise for being ‘overweight’ while being abused for this. ‘Every time they turn me, they’d say “we need to move this pig!”’, she explained. ‘They didn’t hide it. They didn’t even say it only to me. They just say it so the whole world can hear’. Lai-Lan was also denied water because the ward staff said the more water she drank, the more she might need to ‘pee’. Such experiences of hospitalisation were debilitating to self. ‘I almost feel broken when I have to stay in hospital’, Lai-Lan explained before moving swiftly to another matter.

These place-based experiences evidently not only eroded participants’ autonomy and independence but also identities and selfhood. Such hospital-based experiences resemble those in the asylums to which Goffman has referred with admission involving a civil death or ‘mortification of the self’ enacted through degrading procedures. Goffman describes this as ‘an abusive, immoral act of symbolic violence’ (1961, 130). The circuit Goffman describes from pre-patient to in-patient whereby ‘inmates’ progresses are measured by compliance to rules rather than actual betterment was echoed in participants’ accounts. However, it was noticeable how adroit participants were in imitating, or caricaturing, the construct of the ‘good’, ‘well’ and ‘sane’ patient. In so doing, participants merely paid lip service to the disciplinary regime of the hospital and the discourses registered and generated therein. ‘I learned the rules’, Pik-Kwan explained. ‘If you want to leave, you just need to follow the rules. Just say: “I have no delusions”, “I have no hallucinations”, “I’ll take my medications”, “I don’t think of suicide”. I learned to be a patient. I learned how to answer how doctors expected me to answer’. Meanwhile, Win-Hong described how patients’ words were insufficiently potent in themselves. Instead, doctors relied upon the words of, for example, nurses through the reports they made. Such circumstances compelled him to ‘learn to please the nursing officer’ and to perform as part of a ‘team’ (Goffman 1959, 77).

In so doing, Pik-Kwan and Win-Hong produced cynical performances: a surface form of acting that was nevertheless capable of producing the simulation of deep acting. How participants speak the medical language of their apparent masters, namely people like doctors and nurses, may be comparable to how colonised people speak the language of colonizers in ways that resist and threaten (Bhabha 1994). This erodes the seeming certainty, and ontological separateness, of apparently taken-for-granted and natural distinctions between sane/insane and the hierarchies between them. These spatial tactics could, furthermore, produce experientially positive outcomes, namely participants’ removal from a field in which they were subject to exclusionary practice.

Placemaking and place-work

The final thematic cluster to which this article refers explores how far participants’ place-based practice may maintain, reinforce, and/or transform exclusionary places. Notions and processes of placemaking and place-work help to elaborate upon this. Placemaking refers to the ways space is made useful, inhabitable, and meaningful and encompasses both overt elite strategies and the more subtle, sometimes even indiscernible, everyday tactics practiced by ordinary people. Place-work, meanwhile, refers to ‘real, on-the-ground, often complex work required by people to create more inclusive lives in the community’ (Power and Bartlett 2018, 563).

Many of participants’ tactics seem intent upon making actual and figurative spaces within exclusionary places in ways that correspond with definitions of placemaking. Processes of zoning may best exemplify placemaking. For some participants, these zones, like the bedrooms of young people, constitute ‘spaces over which they can exert a level of control … and in which they can achieve some level of privacy away from the challenges of everyday life’ (Lincoln 2015, 87). In these zones, people can, for example, evade stigmatizing gazes. Emotional working functions similarly. Nevertheless, while such spatial practice may defuse potentially awkward encounters and produce conditions conducive to future occupation of space, it places burdens upon the people who practise it (Cockain 2021b) and leaves the oppressive hegemonic socio-spatial norms of ableist and disablist spaces undisturbed although, admittedly, disabled presence may be potentially transformative in and of itself (Cockain 2021a).

Emotional working which may sometimes even resemble mimicry in and about hospitals and the medical discourses therein may be regarded as markedly more subversive place-based practice. It is not necessarily transformative, however, since it leaves oppressive practices and discourse intact while, nevertheless, enabling ‘patients’ to navigate their ways through, and even out and away from, such places. Other practice seemed intent upon transforming place-based exclusions. Transformative intentions were evident in commentary produced by Sau-Lan, a middle-aged female, who talked about her autistic sister who lives in a residential home. Her commentary about their experiences of using public transport reveals the demands of emotional working and how social relations impact practice:

‘Before I was so scared when people looked at me. 20 or 30 years ago, I wished I could just get off the bus. I just did not want to be seen. However, later I said to myself if I do not take people with intellectual disability out, they will never be seen. People do not understand our situation; how difficult it is to care for someone, and we must handle that. Sometimes people are unsympathetic, they say “what a bad kid”, and so on. They say “I am so sorry for you” but really, they mean, “Don’t bother me” … You know, my sister … she has many temper tantrums, and hits her head. It is usual. However, I said to myself, I must let her be seen. I must have courage to take her on public transport, so people understand. Nowadays, when I am on a bus, or on the MTR [a local mass-transit rail system comparable to the London Underground], people will say, “oh please, sit down.” I must let them know she is one of us too. She has every right to live in our community, to share with us. Of course, I am grateful to people who offer their seats and even smile. It does not matter; just a little gesture may help to encourage me to do better … We have step outside, to let ourselves to be seen, to be heard, so people will understand. We are not psychiatric nurses.’

Sau-Lan’s narrative acknowledges, and perhaps even realizes, her capacity as an active agent who may alter the world. This consciousness is, as Freire explains, crucial to conscientisation, namely the process whereby people ‘not as recipients, but as knowing subjects, achieve a deepening awareness both of the sociocultural reality that shapes their lives and of their capacity to transform that reality’ (1985, 93). Implicit in Sau-Lan’s ostensibly mundane commentary about bus and train journeys is a sense of her ‘being with the world’—an orientation, or stance, that has ‘objective distance from it’ but which, crucially, offers transcendent potential: an alternative to being ‘submerged in life with no possibility of emerging from it’ (Freire 1985, 68).

Equally resistant and potentially transformative is Yao-Qiang’s place-based practice. Admittedly, while writing this article I have come to romanticise Yao-Qiang, in ways that may obscure such matters as the workings of power (Abu-Lughod 1990, 42). Yao-Qiang had one of his legs amputated almost ten years ago because of an accident and now uses a wheelchair. During the interview, Yao-Qiang came close to tears several times while talking about his accident and his worries about matters like accommodation and income. He also recounted numerous examples of the aggressions he had been made subject to in such spaces as wet markets, streets, and metro stations before outlining the tactics he deployed in such circumstances. Yao-Qiang, in ways that may seem compulsive, insistently takes photographs of exclusionary places like bus stops and streets and the barriers therein. During a period of several weeks, Yao-Qiang sent some of these pictures to me on WhatsApp. These proliferated to an extent that might thwart even the most quantitative-minded researcher. Through such photographs, Yao-Qiang actualises agency, namely the socioculturally and discursively mediated capacity to act, intervening in disabling geographies and sometimes even changing them when local legislators act upon his actions. Yao-Qiang’s place-work is facilitated by online technologies that, as scholars have illustrated, enable ‘non-elite’ actors like Yao-Qiang to ‘acquire visibility in the public arena’ (Chadwick 2013). The space Yao-Qiang makes extends beyond the WhatsApp group we temporarily co-inhabit, or occupy, into spaces like brochures circulated by the local association in which he is an active member. These texts may be regarded as figurative droplets that unfold into place. Yao-Qiang’s place-based practice may, accordingly, be regarded as challenging disabling geographies while also transforming them, to some degree.

Participants’ place-based stories may also be regarded as transformative: as a form of social action; a doing. Stories, as De Certeau explains, ‘carry out a labor’: ‘In a pre-established geography … everyday stories tell us what one can do in it and make out of it’: Everyday stories open ‘a legitimate theater for practical actions’ (1984, 118, 122, 125). The distressing accounts this article has documented may disturb the self-congratulatory official discourse pervading public spaces that seem to celebrate inclusionary societies on, for example, government webpages (Cockain 2018b) and billboards as an already accomplished, or realised, thing-like form. While it would be erroneous to suggest the power of the discourse produced by people appearing in this article is equivalent to the centralised messages produced by, for example, governments in ableist/disablist societies, stories still constitute place-work. Such stories while admittedly not yet public are droplets which expand a ‘social fund of knowledge about disability’ that, as Rapp and Ginsburg explain, is ‘foundational to the integration of disability into everyday life’ (2001, 537). These narratives may, furthermore, weave non-normative bodyminds into the social fabric. This may alter its texture permanently because, as Rembis explains elsewhere, ‘incremental changes accumulate and calcify and become codified in law and public policy (2017, 7).

Concluding thoughts

This article has not only documented the prevalence of exclusionary places and practice, even in a context which officially recognises the UNCRPD but also, and especially, the tactics people with direct and indirect experiences of exclusion and disablement deploy to deal with the stresses, strains and demands of exclusionary environments and disabling geographies. These spatial tactics both maintain and transform disabling geographies.

The exclusionary qualities of these environments are potent. Persons appearing in this article are, therefore, comparable to those coerced travelers to whom Phillips refers who despite struggling to find refuge within inhospitable and disabling geographies ‘adopt clever and intricate forms of social and psychological resistance to counteract difficult terrains’ (1997, 16). This was, perhaps, most evident in participants’ hospital-based practice; marked by ‘sly civility’ (Bhabha 1994) and even mimicry. It was also apparent in ostensibly more mundane practice like absenting, zoning, forms of emotional working and the stories participants produce about place-based practice. Such enmeshments between people and place exemplify how although a spatial order ‘organizes an ensemble of possibilities … and interdictions’ (De Certeau 1984, 98), participants actualise some of these possibilities, albeit while not being fully determined by them. In this way, as De Certeau explains, people make a spatial order ‘exist as well as emerge’ (1984, 98).

There is an obvious, and discordant, dissonance between the commentary and practice gathered in this article and celebratory, perhaps even self-congratulatory, top-down discourse which constructs social inclusion of the kind the UNCRPD seems to envisage as an already realised, or accomplished, object. This chasmic gap may index fissures and fragmentation in the material and discursive construction of socially inclusive societies. The pervasive disabling practice and places this article discloses may also highlight how social inclusion/exclusion is accomplished/unaccomplished in the spaces between people. This may compel, and perhaps even oblige, critical attention is paid to this in-between-ness which, as Titchkosky explains, ‘makes the difference’ (2012, 89, original emphasis). This may also disclose how the outcomes of enmeshments of people and places are neither natural nor fixed objects but contingent things that could, crucially, be other than how they are.

Disclosure statement

No potential conflict of interest was reported by the authors.

Additional information

Funding

This work was supported by Research Grants Council General Research Fund Hong Kong.