Figure 2.1Still from VR video (Altered Perception Exhibition, 2022): Issy in her kitchen arranging flowers. All rights reserved.

In-depth understanding of deafblind people’s perception and experiences of touch has become even more important due to the coronavirus (COVID-19) and subsequent wariness around touch and social distancing. At the end of March 2020, a laboratory study showed that COVID-19 could stay on plastic and stainless-steel surfaces for days. The study affirmed earlier guidelines by the World Health Organization (WHO) that the virus can be spread through touching contaminated surfaces (Lewis, 2021).¹ As a result, health agencies around the world, including the UK’s National Health Service (NHS), advised people to frequently wash their hands and disinfect surfaces to help stop the spread of COVID-19.² As scientific studies grew, their understanding of touch as the primary form of transmission changed to transmission through droplets and particles that spread in the air from breathing and behaviours like talking or coughing (Van Doremalen et al., 2020). New preventive measures were introduced, such as 2-metre social distancing and meeting people only outside or in well-ventilated spaces. Nevertheless, this newer finding did not rule out the earlier claims about risks associated with touch or the emphasis on protocols of using hand sanitiser and decontaminating surfaces. Preventive measures such as disinfection, social distancing and wearing masks continued to be practised as main safety strategies. At the same time, the studies overlooked the impact of these measurements on minority groups such as deafblind people who rely on touch for their day-to-day life and communication.

Deafblindness is a complex condition of dual sensory impairment or loss that, according to the World Federation of the Deafblind, affects 0.2 per cent of the global population (2018). In the UK, nearly 400,000 people are affected, and the number is expected to increase beyond 600,000 by 2030 (Deafblind UK, 2020). Because the percentage of the population affected by deafblindness is relatively small, there is a significant lack of literature and social awareness related to the community’s experience (Dammeyer, 2014; Jaiswal et al., 2018; Roy et al., 2018; Simcock and Wittich, 2019). There is especially a lack of qualitative enquiry into deafblind people’s experiences (Jaiswal et al., 2018; World Federation of the Deafblind, 2018). Due to the lack of suitable awareness, the specific needs of deafblind people were missed from the safety measures and government policies introduced during the coronavirus pandemic. The project that led to this chapter, Touch Post-COVID-19, addressed this gap by gathering and studying the personal stories and experiences of the deafblind community across the UK during the pandemic. This project grew out of earlier research from 2019 that intended to understand sensory perception and explore deafblindness from the intersection of art, technology and culture. With the occurrence of COVID-19, the project turned its attention to the impact of the pandemic on the community, to question and explore impacts of touch deprivation on deafblind people’s experiences during the pandemic.

To understand deafblind experiences, this interdisciplinary and public-facing research focused on audio diaries and video interviews, adopting Grounded Theory (GT) as a method for the collection and analysis of these data. Grounded Theory is concerned with a theory or concept that emerges from the systematic process of gathering and analysing data (Glaser and Strauss, 1968). A key position of GT is the way in which research remains purposefully open to the potential of gathered data in the research process. Anything that can help researchers generate concepts can be data, including an informal conversation, a text or image in the news, or a relevant object. For this research project, GT provided a framework for gathering and understanding data in relation to emerging themes and concepts. The research team worked with six members of the deafblind community from Scotland and England (identified and selected through the Deafblind Scotland and Deafblind UK organisations) and with various levels of impairment (from zero to partial hearing and seeing) and of different ages and genders. Researchers documented participants’ experiences in the form of audio diaries and video interviews over 18 months beginning in November 2020. Audio diaries were the primary form of data in which participants’ experiences and reflections were continuously gathered and analysed for common themes, issues or ideas that, in turn, informed the research direction. Over a 2-week period, participants were asked to record a diary, between 2 and 10 minutes long, describing their day-to-day experiences of touch, reflecting on their feelings, different events, interactions and physical and/or spatial encounters during the pandemic.³ This process was repeated approximately every 4 months, per participant, over a total of 18 months (i.e., each participant recorded a 2-week continuous diary three times in total). After each stage, gathered data were studied and categorised according to the themes that occurred to the research team or resurfaced from the data (e.g., touching/scanning through feet, imagination as seeing, sensing nature, space) or identified issues (e.g., social distancing, discrimination, danger and vulnerability, hygiene). A one-to-one interview with participants followed each data collection and analysis stage.⁴ From the identified themes and stories, open-ended questions were developed. Interviews aimed for an in-depth understanding of, for example, the impact of social distancing on participants’ everyday activities; ways in which touch deprivation distorted their ability to map and memorise their everyday public spaces; and how enforced isolation increased their sense of dependency and vulnerability. The research team then designed a series of workshops with participants to explore emerging ideas and test possible solutions to identified challenges. The key aspect of our research method was the placement of participants at the centre of the research process through data collection, close conversations and researchers’ involvement with participants. This close working together and use of audio diaries as the core of the method allowed researchers to identify the needs for and development of various outcomes such as new haptic technology; a policy brief and case study; art exhibitions and awareness-making workshops (to bring members of the deafblind community into dialogue with others from broader society); and co-creation of short films with selected participants about their experiences and stories.

This chapter highlights three stories from members of the deafblind community in Scotland and England, with a particular focus on one member for the sake of clarity.⁵ The stories focus on touch as a ‘visual’ cue that offers spatial awareness, but is distorted due to imposed wariness about touch because of the pandemic. It is evident that for blind individuals, touch is crucial for spatial understanding and navigating the world (Alary et al., 2009; Goldreich and Kanics, 2003; Papadopoulos et al., 2012; Papagno et al., 2016). ‘Visual mental imagery’, an internal representation and recalling of objects and events unfolding in the ‘visual’ world, is significant for human understanding and identification of explicit shapes, spatial relations, memory formation and human behaviour (Borst et al., 2012). In sighted individuals, visual perception, the dominant sensory modality, usually precedes visual mental imagery and allows for successful spatial navigation and social connection. If a sighted person’s physical ability to ‘see’ were to be reduced or diminished, they would have to develop different modes of understanding the nature of space and of social behaviour within it (Måseide and Grøttland, 2015). Because perception is made up of unified multisensory experiences, the absence or impairment of two senses has an even greater impact on deafblind individuals, making touch the main sensory modality that governs their understanding of the world (Department of Health, 1997; Jaiswal et al., 2018). During COVID-19, governments did not recognise how the deafblind population processes information and failed to consider them in their decision-making. Touch deprivation, caused by rules such as 2-metre social distancing and the individual’s wariness towards touch, has disturbed their information processing and everyday activities. Consequently, the lack of considerate measures to include those with multisensory impairments pushed deafblind people into further isolation when this group is routinely excluded from society under normal circumstances.

2 metres distance: reaching towards

One of our research participants, Issy, has type II Usher Syndrome.⁶ She lost her sight over time as an adult. Despite being completely blind and severely deaf, Issy has a passion for music and plays the flute often. Walking and swimming are her other regular activities. Imagination plays a significant role in her day-to-day experiences. In her audio diaries, she repeatedly refers to her perception as an ‘inner eye’. With her ‘inner eye’, Issy noted, she catches things beyond the grasp of sight – like the almost solid nature of the winter air in the morning, or the enchanting atmosphere of a frozen landscape. For her, touch is about knowing, feeling, imagining and communicating. However, the pandemic severely impacted her experiences. The 2-metre social distancing rule enforced early in the pandemic imposed limitations above those experienced by sighted people.⁷ For example, obtaining necessities or making simple contact with other people became impossible. The 2-metre distance can be frightening for someone relying on close proximity and touch as their only way of sensing the world. In her audio diary, Issy speaks about her struggles:

In a society that privileges vision as the dominant sense for knowing and thinking about the world (Belova, 2006; Brook, 2002), vision is inevitably considered the primary sensory modality capable of protecting us at times of crises like COVID-19. A blanket approach of a 2metre distancing rule presumed a particular subject and caused significant inequality for a part of society already marginalised due to impairments depending on touch. How can a blind person follow at 2 metres distance or know if others are keeping at a safe distance? In sighted people, eyes are directional and provide a safe distance from the perceived subject, making it possible for the brain to identify objects and events swiftly, assign meaning and respond accordingly without any unnecessary physical entanglements. This capacity to separate the perceiver from the perceived, driven by vision, permits spatial awareness based on what are known as ‘allocentric’ and ‘egocentric’ representation. Allocentric representation, which is the understanding of the position of items in space relative to each other and independent from the subject’s orientation (object-centred) (Colombo et al., 2017), relies on distanced vision and is vital for long-term memory and navigation (Papadopoulos et al., 2012). On the other hand, egocentric spatial representation is about the position of objects in relation to the viewer (body-centred) – an example could be to say that the screen is in front of ‘me’. For blind people, an awareness of egocentric referencing is significant for the development of strategies based on touch (haptic) that help them to extract information (coding) from near spaces and interpret that information to form meaning (representation). Haptic exploration of space (i.e., exploring space using touch) positions the body, not the eye, as a reference to encode the distance and orientation of objects (Papadopoulos et al., 2012; Postma et al., 2007).

Both allocentric and egocentric representations are repeatedly discussed in neuroscience and human biology literatures for their importance in creating visual mental imagery central to spatial memorisation (examples are Chen and Crawford, 2020; Colombo et al., 2017; Goldreich and Kanics, 2003). The role of what is formally called haptic egocentric referencing (locating objects according to one’s own body position) in creating mental imagery and in navigation is less discussed in relation to sighted people because sight tends to overshadow the role of touch and haptic engagement in forming mental images, even though egocentric referencing stays relevant. However, in the case of a deafblind person’s awareness, haptic egocentric representation cannot be replaced by other sense modalities. For Issy, spatial memorisation through haptic egocentric referencing is the only way to construct a mental image of her surrounding:

Constructing a mental image through a haptic encounter requires its own pace. Unlike sighted people, blind individuals perceive and traverse the space slowly as they ‘[investigate] tactile and auditory qualities’ of a site. This ‘corporeal, searching, and step-wise experience of space’ is more detailed and consequently requires more attention and time (Måseide and Grøttland, 2015: 596–597). For deafblind people, hearing loss/impairment is an added challenge that makes touch the primary mode of perception. Issy and other research participants expressed this continuous tactile scanning of the space as laborious and exhausting because the body is always in a ‘state of alertness’. Understandably, sighted people often attempt to remove obstacles for a blind person or pre-empt their motivation and hand them what they think a blind person might be ‘looking for’ or ‘scanning for’.⁸ However, what to a sighted person is an ‘obstacle’, to a deafblind individual can be a ‘pile of information’ necessary for their imagination and spatial awareness. By clearing their path without fully considering their different mode of perception, sighted people erase necessary information and sensations from their world. This consequently makes spaces difficult to navigate and unsafe because, as Issy says, in an open space, ‘there is nothing to relate to’.

Social distancing, placed as a safety measure during COVID-19, did not consider these other perceptual modes and consequently took away the necessary haptic references from deafblind people. This enforced open space distorted participants’ spatial awareness and ability to form mental images. Issy highlights that instead of safety, it brought anxiety: ‘[With] two-metre distance, I lost all forms of communications. This is a form of discrimination, putting distance between me and my life.’ For our participants, their vital mode of experiencing and communicating with the world was taken away under the banner of care and protection. At the same time, other people could still go on with their lives (even if restricted). To people like Issy, this felt like a one-sided approach to the pandemic that disregarded their presence in society. It can be argued that the deafblind community were already invisible and excluded from decision-making, and COVID-19 has only shed light on pre-existing inequalities. For our participants, simple tasks like moving around in public spaces, shopping in a supermarket or taking public transport were not an option anymore, and their exacerbated isolation continued beyond the early stage of the pandemic; as Issy says:

For our participants, this convoluted emotion was an added toll on anxieties associated with the pandemic.

Distorted: scanning through feet

COVID-19 distorted participants’ ability to form mental maps of spaces as well as their already existing images. For a moment, imagine that one morning you step out of your home only to discover that your neighbourhood and familiar streets are suddenly and completely different. You may feel confused, anxious and unsure about how to get to your destination, continuously losing orientation and getting lost. Now, imagine it happening to you every other day, if not every day. This was Issy’s experience as she attempted a daily walk in her familiar neighbourhood after the easing of the lockdown and the phased re-opening of hospitalities.¹⁰ Cafés and restaurants were expanding outside and changing pedestrian areas every day. In her walk, Issy continuously bumped into ‘unexpected’ obstacles that distorted her mental image of the neighbourhood. She experienced great anxiety to the point of becoming tearful in the middle of the street and decided to take refuge in her house and rely on close family members when going out. The pandemic even impacted her steps and the feeling of the ground under her feet.

When we think about touch, particularly in the context of blindness and communication, it is common to think of hands and fingertips. Roger, another participant, highlights that ‘touch uses all aspects of the body – from the top of the head to feel the sunlight, to the feet, which are important for feeling where you are on the street … Feet are important for feeling’. All our participants highlighted the prominence to their perception of touching through their feet. Yet the importance of feet as a form of touch is largely overlooked.

The placement of the eyes on the head gives a sighted person an immediate awareness of the front field that allows for visually orienting themselves. For a blind person, on the other hand, forward-oriented perception is based on haptic perception (Harris et al., 2015; Iachini et al., 2014) and assisted by hand touch and the use of a white-red cane (for a deafblind person). Even if they choose to focus on the front for their navigation, their perceptual field encompasses the whole body and its complete alertness, particularly while walking. Through their feet, they scan and perceive the environment and recognise characteristics and qualities of different spaces, such as the change of material structure and texture or the shift on the edge of a pavement. This continuous touching and scanning of the ground beneath their feet, in addition to identifying objects in the space through hand touch or cane, is significant for effectively encoding the space to form a mental map.

However, COVID-19 restricted participants’ ability to touch through hands and feet, causing them distress and anxiety and interfering with their effort to create a mental map that made them feel safe and more independent. John, another research participant, explains scanning via feet as part of a ‘holistic way’ of feeling through the body and gathering various fragmented pieces of information from his surroundings. He describes combining these fragmented pieces of information to create a mental image, like solving a jigsaw puzzle.

John has been severely deaf from birth and now has 5 per cent vision left. Like other participants, he cannot immediately know the space beyond his proximity. It requires a laborious and time-consuming process of touching, feeling, evaluating and interpreting one element before moving to the next one. John describes this process as exhausting, with ‘a lot of concentration and making up pictures’, but necessary for creating a mental map of space in relation to his body. ‘When you think back, you think: how did I do that [distinguishing between different rooms without the help of vision] but it’s more down to a holistic way of feeling. You know your body, your feet, your nose, etc.’ Once a mental image of a site is created from repeated scanning through touch, John can navigate through that space more efficiently and independently because he is now aware of the spatial configuration of items in the place independent from his body (excluding the moving objects and people). ‘If someone is blind or visually impaired or whatever – they are often very, very conscious of their space, and they know where things are. And the worst thing you can do is move something in that space.’

In addition to the challenges of social distancing for our deafblind participants, this continuous shifting and reconfiguring of public spaces disturbed their ability to map space and navigate it.

Reconciliation: joy or fear of touch

Emergency measures introduced during crises often tend to change social norms and reshape human behaviours (Brailsford, 2014; Gross and Ní Aoláin, 2006; Nohrstedt and Weible, 2010; Taplin, 1971). Social distancing and isolation are no exception. Even after easing these measures, their ongoing negative impact was evident in the gathered data. ‘Even now, with the relaxing of social distancing, the joy I had in reaching out to touch and link arms with other people has become subdued and cautious, as I warily navigate my world through my hands and my sense of touch’, says Issy. An ongoing sense of isolation and fear of touch affected our participants’ daily activities and limited their already minimal social interactions. The audio diaries and many conversations with deafblind individuals indicate that ‘reminding’ sighted people or ‘consciously utilising’ their other sense modalities for perceiving can assist in counteracting the negative impact of the pandemic, such as further isolation and social exclusion of the deafblind community. Building shared spaces of interaction and communication into the fabric of society is essential for an inclusive culture and a sensible body politic conscientious of other bodies.

Neuroscientists and psychologists have largely argued that our perception of events and objects comes from the integration of different types of information received from all our senses (see Baumard and Osiurak, 2019; Betti et al., 2021; Dehaene and Changeux, 2011; Faivre et al., 2017; Mudrik et al., 2014). The holistic experience of the senses and the process of meaning-making results from the vortex of all sensory inputs, giving us an understanding of the world as it is known. We also know that information processing is central to making sense of the world and distinguishing between the self and others. The cultural theorist, Erin Manning, argues that the body is not static as a receiver, but active; ‘[to] sense is not to simply receive input – it is to invent’ (2009: 212). The body does not hold on to the information. Instead, information in-forms a new relation with whatever the body has encountered, originating movement and change. Perception in all modes always involves this reciprocal relationship of reception and action. But touch that is in implicit interaction with other senses and the force of reaching towards the other puts the body in motion, both the ‘sensing body’ and the ‘political body’ (Manning, 2007). Bodies of all forms and colours touch and are touched by their surroundings, affected in each encounter. Touch as reaching towards is an act that draws ‘other[s] into relation’ (Manning, 2007: 15). These relations are not free of risk. Unlike ‘looking’, which involves a safe distance, touch connotes an entanglement that beholds danger – one is affected as much as affecting the other. Early in the pandemic, realising that ‘my’ touch equally threatens ‘me’ and ‘others’ brought many conversations on our interconnectedness. However, as Manning points out, touch is not only physical but can be psychological, cultural and political, with bodies potentially changing each other in exchanges taking place through each interaction. Starting from how the body, a single unit, processes information and initiates movement, she magnifies the role of bodies as the nexus of shape-shifting larger estates. She argues that there are bodies in motion that resist the predefinition of subjectivity. They continuously set in motion the world around them – the body not confirming and thus challenging the collective perception. For Manning, how we define the body forms our politics. While questioning the dualistic mind–body/reason–senses model, Manning explores the sensing body to challenge existing state-centred political structures that lack flexibility. The existence of ‘unstable bodies’, which she refers to as ‘the other, the outside, the homeless, the refugee or the stranger, the sexual “deviant”’ challenge the fixity of the politic (2007: 95). These bodies, continuously re-inventing themselves, can unrest normative bodies that represent the social image as a whole. In ‘relational’ environments, bodies continuously learn from and build alongside other bodies and can shape-shift the whole for a more inclusive society.

Conclusion

My own very first meeting with a deafblind person before the pandemic was perplexing because I had no previous experience of communicating with deafblind people. It was the holding of hands to communicate and sit together that moved me and my thoughts. It triggered a mode of knowing the ‘other’ that is not rational but, at that moment, meant simply accepting the other body and responding to it by observing your senses entangling with the other. Our participants unanimously expressed a great desire and need for public awareness of how they interacted with space, as well as for varying sensory technologies and experiences that would help them be part of the larger society.

Roger describes discovering new relations through touch while expressing the impact of the pandemic on his daily activities. For Roger, touching is more than receiving sensory input or holding on to information. It is a chance for a new perceptual experience and to form a new ‘relation’. Corneal scars and glaucoma suffered during childhood limit what Roger can perceive quite a bit – he is able to see colour, but with little definition. Trees, one of his favourite things, appear as a golden or green mass. When gardening, he ‘observes’ plants and trees: he can ‘feel’ the seasons, and the maturing of plants and branches, through the bendability, texture and direction of the growth. Roger says there is a ‘magic’ to touch – ‘you can feel the energy of things’. He describes it as a joy and energy that, like inhaling air, expands his perceptual experience. But the pandemic transformed his joyful experience of touch into a feeling of threat to his safety. He couldn’t hold people’s arms anymore and, even with hearing aids, communication was not easy. Simple everyday tasks became significantly challenging:

With the relaxing of restrictions, Roger began going places again. But without knowing his distance from others or being able to assess the safety of his environment, he had no option but to stay mostly passive for other people to act first, like someone squeezing his arm:

A simple gesture of touch communication that was considered risky earlier offered Roger compassion, safety and comfort. Roger is eager to let sighted people know that touch is not always about making up for lack of vision. Deafblind people’s tactile world contains much joy. He brings us back to the importance of touch as a mode of communication based on felt knowledge. Even though our body does not distil its sensation to one sensory organ (such as the eyes), the perceptual and epistemological ranking of vision over other senses has largely overlooked other experiential modes of knowing. We may argue that physiologically, it is common for most people’s awareness to be occupied by a dominant sense that overrides overall sensory experiences. Therefore, a sighted person may not easily experience the joy in Roger’s tactile world or the extent to which social distancing has impacted Issy’s ‘inner eye’. Yet, the interwoven nature of sensory experience can offer various modes of knowing. Following Manning’s description, information processing is as much about apprehension and setting relations as about distinguishing between self and others (2009). When explored fully, the joy in a deafblind person’s tactile world offers a way of seeing and hearing that, instead of being grounded on distance, is based on intimate and interconnected ways of knowing. Here, the ‘joy’ is not about sensory stimulation but a close encounter that brings about comprehension and connection in the form of a slowed contemplative observation not overshadowed by one or two senses.

The pandemic has exposed and exacerbated pre-existing inequalities in our society. The gathered data and stories from our participants highlighted the fact that restrictions had impacted them unproportionately. The 2-metres social distancing had the most notable negative impact. It took away their primary means of communication to reach out, feel the world and be part of society. As a result, access to shops such as supermarkets, and consequently to food, was compromised, mainly when online shopping was not an option due to their disability or if it involved touch-screen payments. They found it impossible to navigate public spaces without feeling distressed and powerless, when they could not know whether distancing rules were breached, and more so because of their dependency on close proximity and touch for navigation and communication. Restaurants and bars expanding into public spaces, and shifting the layout of pedestrian sites, added another layer of challenge and distorted participants’ mental image of their neighbouring sites. Touch, which initially was presented as the main form of transmission of the coronavirus, continued to be perceived as the main hazard, even though later scientific findings focused on airborne particles. In the absence of proper and targeted communication from the government, our participants followed self-imposed limitations, such as avoiding touching surfaces despite their dependency on touch. Due to a blanket approach to safety measures that were introduced, our participants were pushed into further isolation and exclusion from society, with increased dependency on family and friends for support. They were more likely to feel lonely, anxious and frightened, expressing deep disappointment that their lives and needs seemed invisible to the decision-makers.

If we are to build a fairer, more inclusive society for the deafblind community, we need to remove the existing barriers and learn from them about their perception and needs. One way is to utilise new sensory modalities (e.g., with haptic technologies – see Kassem et al., 2022) and create environments that enrich diverse modes of experiences and communications. Deafblindness needs to be more central to our understanding of different perceptual experiences. Touch, as a concept that evokes interwoven relations and knowledge, can help us to re-evaluate some of the existing socio-environmental settings and approaches that pre-empt what a group of people may need or experience. The joy in deafblind people’s touch teaches us about the ‘thinking’ (as contemplating and expanding one’s perception) that happens only in a close encounter.

Acknowledgements

This research was approved by the University of Glasgow ethics approval committee. Informed consent was obtained from all subjects involved in the study. The author acknowledges financial support from the UK Arts and Humanities Research Council (AHRC) within the UK Research and Innovation (UKRI) Rapid Response to COVID-19 initiative (grant AH/V012797/1) and from the UK Engineering and Physical Sciences Research Council (grant EP/T00097X/1). The author acknowledges research partners, Deafblind Scotland and Deafblind UK, with particular recognition of the research participants.

Research team

Azadeh Emadi, Daniele Faccio, Mitch Miller, Annie Runkel, Piergiorgio Caramazza, Khaled Kassem