Co-Construction of Orientation in Time and Activities Between an Individual With Deafblindness and Support Persons

Deafblindness and Communication

DB may be caused by congenital brain damage, a syndrome such as Usher, or by restricted senses later in life. The condition may thus be congenital or acquired (Möller 2003). If a person has some or a sufficient degree of hearing left, they may use vocal/auditive speech to communicate. In some cases, when the ability to see allows it, lip reading may afford communication with others. Some individuals prefer to receive loud speech close to their ear (Berge & Raanes 2013) in combination with a hearing aid, such as a cochlear implant (Möller 2003). If a person has sufficient vision left, it could be possible to learn sign language through sight. The vision can facilitate the development of a symbolic language and the association between a sign and the symbol it refers to.

Nevertheless, for individuals with CDB, it is challenging to perceive and express language, dependent on their level of vision and hearing, which vary greatly among these individuals (Dammeyer & Ask-Larsen 2016). Communicative expressions and actions by persons with CDB may be hard to interpret and understand for their communication partners (Hersh 2013). To reach an understanding of what someone is talking about, i.e., to achieve reciprocal interaction, is often challenging for persons with CDB and their communication partners (cf. Dalby et al. 2009; Damen et al. 2014; Damen et al. 2015). People with restricted sight and hearing mainly percieve the world through their bodily-tactile senses (for example tactile sign language). In some cases they have not experience in how to make use of visual impressions and cues to interact. This, in turn, may result in expressions that may be perceived as stereotypical and/or atypical for people who can see and hear (Bjerkan 1996; Dammeyer 2015).

The communication of deaf individuals growing up in non-signing environments has been studied under the label of ‘homesign’ or ‘homesigns’ (for a review, see Goico & Horton 2023). Homesigns are often developed based on gestural communication and used within a restricted family context (for further description, see Goldin-Meadow 2005; Goldin-Meadow 2012). As an example, homesigns are typically used within families where the deaf children are living with hearing caregivers without access to conventional sign language. Homesigns may be used effectively within the family, but they are often not transmitted outside of the family. In the present study on communication between a person with CDB and his SPs, some aspects of the interaction are dependent upon Swedish Sign Language (STS). However, to some extent, communication is restricted, and the concept of homesigns is used to describe the non-conventional signs that are used in the interaction.

The structure of conventional visual sign languages allows for simultaneous non-manual features such as facial and body expressions to accompany manual signing. For example, a variety of facial expressions are used to mark sentence types as interrogative clauses, relative clauses, etc. (Sandler and Lillo-Martin 2006). Many signs are accompanied by mouth actions or mouthing for lexical or grammatical purposes (Boyes Braem and Sutton-Spence 2001). As people with DB have restricted sight, how to perceive visual cues in sign language is challenged. For example, in sign language, embodied adjustments indicate that an expression is a question, with raised eyebrows and the torso leaning forward (Liddell 2003). The visual cues in sign language (for example, raised eyebrows) become an issue when signing with individuals with CDB since they cannot easily see such adjustments.

Similar to all languages, conventional sign languages are influenced by and accommodated to cultural aspects. An example is that a person’s name can be fingerspelled letter by letter, but the person can also be given a personal sign—a name sign that reflects a person’s character or something significant for the person (Börstell 2017; Supalla 1990).

In summary, interaction involving people with DB or CDB depends on language that is largely individually adapted. Conventional signs and language resources can be used if visual and auditive skills allow it. For people with CDB in particular, systems and resources often need to be highly individualized (with homesigns, tactile language, and other means), developed, and understood by themselves and their communication partners over time but can often be very hard for outsiders to understand.

Conversation Analysis as a Theoretical and Methodological Tool

For the study, naturally occurring interactions were analyzed using CA (e.g., Sidnell & Stivers 2013) in its multimodal form (cf., Mondada 2014; Mondada 2016). The analysis in CA starts with an ‘unmotivated’ examination (Sacks 1984, 27) of a video corpus. This means that the interaction is scrutinized without any preconceptual ideas of what to look for. Multimodal resources are particularly important in interactions involving people who have a disability that affects language and interaction (Antaki & Wilkinson 2012; Wilkinson, Rae and Rasmussen 2020). Multimodal resources (Mondada 2014; Mondada 2016) include embodied actions such as body movement (Haddington et al. 2013), gaze, body posture, facial expressions, gestures, and meaningful use of the material surroundings, like the manipulation of objects (Goodwin 2018; Mondada 2019; Streeck et al. 2011).

The organization of sequences is central in CA (Sidnell and Stivers 2013), deriving from an assumption that nothing happens in a social vacuum. Social interaction is thus manifested by actions built by sequences that constitute as well as renew the context in which they take place (Heritage 1984; Linell 2011). ‘Paired sequences’ (Hutchby and Wooffitt 2008, 42), or ‘paired action sequences’ (Wooffitt 2005, 32), i.e., contributions to interaction that conventionally come in pairs, such as greetings and return-greetings, questions and answers, etc., are of particular importance for the current study. This organization of pairs proposed by Schegloff and Sacks (1973), known as adjacency pairs, has a recognizable difference in the first part (for example, a question) from the second part (for example, an answer), and the parts should ideally be produced following each other in the sequence. However, in relation to people with CDB who use tactile sign language, adjacency pairs tend to function differently than in conversation among people who hear and see. For example, interactional feedback and co-reference are often challenged (Ask Larsen 2003). The distance between the first part and its potential second part in the action sequence is thereby prolonged by several turns, a feature commonly noticed also in relation to other forms of communicative disabilities (Wilkinson et al. 2020). In this latter respect, participants often engage in ‘repair’, i.e., practices to overcome problems in achieving mutual understanding in spoken interaction (cf., Hutchby and Wooffitt 2008; Schegloff, Jefferson and Sacks 1977; Sidnell and Stivers 2013), as well as in tactile signed interaction (Willoughby et al. 2014). Repetition of signs (and freezing) is also a way to express prosody in tactile language (Iwasaki et al. 2022). In the current study, however, the term ‘repetition’ has been used rather than ‘repair’ in analyses of participants’ step-by-step construction of sequences.

In social interaction, people recurrently repeat themselves when talking (Anward 2004; Tannen 1987; Tannen 1989). As mentioned above, repetitions can be used to address potential problems in the progression of interaction, but they can also be used to carry out actions such as affiliating or disaffiliating with the person who expressed something. By means of repetition, coherence in social interaction is enhanced and social relations accomplished. For people with CDB, repetition of signs and/or tactile language resources is particularly important. Some studies have demonstrated how repetitions, also of body movement (or a bodily-tactile sensation), depicting a prior experience may contribute to a sense of trust and to the recognizability of prior events (e.g., Lindström 2019; Linell 2017).

It is noteworthy that participants do not ordinarily produce entirely identical repetitions. Affiliative turns are, however, more similar in shape to the prior speaker’s turn than disaffiliating ones, albeit one or several linguistic elements are repeated in both cases (Anward 2004; Tannen 1989). Differences in the format of a turn containing a repetition may thus be used to mark a person’s individual stance, at the same time as displaying that the prior statement was perceived, confirmed, and built upon (see ‘recycling with différence’ in Anward 2004).

Throughout this study, the analyses are based on the notion ‘next-turn proof procedure’ (Sacks et al. 1974, 45). This means that in a pair of actions, it is a participant’s response that forms the basis for how something is interpreted from the interlocutors’ as well as the analyst’s point of view. Next-turn proof is also a tool used to follow topic shifts in interaction, also known as footing shift (Goffman 1981).

A Visual Schedule

In interactions involving people with CDB, physical objects are important resources for understanding, alongside signs and tactile means. In the interaction investigated in this study, a visual schedule was sometimes used by the person with CDB and his SPs. This was based on an approach called Treatment and Education of Autistic and related Communication Handicapped Children Schedule (TEACCH) (Schopler and Reichler 1971). Such visual schedules can help explain what will happen at a given moment in time (Siegel 2003, 353). An example would be a weekly calendar with columns for each day (Mesibov and Shea 2010). In Sweden, for a calendar of that kind, weekdays are coded by a specific, conventional color for each day (see Figure 1 below).

Figure 1

On the schedule, pictures that represent things or activities are placed in chronological order, i.e., from the top to the bottom of the day at hand. The schedule may be modified to adapt to personal needs. Although the program of TEACCH and the schedule were initially designed for children with autism within an educational setting, the program has also been successfully evaluated for adults with special needs who live in residential homes (Siaperas and Beadle-Brown 2006).

Ethical Considerations

The project of which the present study is a part has been approved by the Swedish Ethical Review Authority (no. 2020-02256 and 2020-06437) and follows the ethical principles of the Declaration of Helsinki (World Medical Association 1964). The SPs have given their written informed consent for participation in the study, whereas written informed consent for Jim was provided by one of his relatives.

Repetitions in a Second Turn to Identify and Confirm a Reciprocally Understood Subject

The repeated signs made by the SPs conventionally had a more distinct and larger movement compared to Jim’s original signs (see Examples 1a, b, c, and 2). Some of the repeated signs were followed by the addition of an evaluating answer or a sign for an activity.

First, in the series of three examples below, a pleasurable activity—going to Tivoli—is identified step-by-step in terms of who, where, and what will happen (Examples 1a, 1b) and which detailed activities (i.e., carousels) will be attended (1c).

In the example above (Example 1a), the SP, Ben, states that it is coffee and that a car is going to the Tivoli (Line 1). Jim replies with a conventional STS sign for ‘clean’, which is the name sign for an SP named ‘MARY’ (Line 2). In this situation, Ben answers with a repetition of the name sign for Mary and a positive answer, i.e., ‘YES’ (Line 3). However, without the mouth being shaped in conjunction with the sign ‘clean’, it is difficult for someone who does not know Jim to understand that this is a name sign. Jim continues signing ‘TIVOLI’ (Line 4), which is repeated, i.e., a confirmation by Ben (Line 5), and followed by a pause. Consistently, longer pauses occur when Jim seems satisfied with an answer, followed by switches to another topic of conversation or activity (such as starting to eat). The repeated sign and answer have afforded an understanding of who is going (to come with Jim) and where they are going (i.e., to Tivoli).

The conversation proceeds with Jim initiating possible questions about the activity and whether he is the one who will attend the activity. The SP continues to use repeated signs as a practice that functions as a confirmation of the fact that they refer to the same thing. Thus, Jim and Ben collaboratively identify and systematically specify what is going to happen.

After identifying the SP Mary and the location, i.e., Tivoli (Example 1a), in Example 1b, Jim signs ‘CAROUSEL’ as a possible statement or question (Line 6). Ben repeats the sign, which confirms a potential mutual understanding (Line 7), so the conversation proceeds in a steady fashion. Jim points to himself and signs ‘TIVOLI’ (Line 8), and then Ben repeats ‘TIVOLI’ (Line 9) in a confirmatory way. Once again, Jim points to himself, to which Ben responds with a ‘YES’ and a pointing toward Jim (Line 11). After determining the place (Tivoli) and that Jim is identified as the one who will go there (Lines 12–15), a pause follows. Furthermore, the focus of the communication changes after the break, from where to go to what will happen, i.e., which different types of carousels that Jim will ride. The types of carousels are dealt with throughout a long episode of interaction (Example 1c).

The signs for the different carousels do not follow conventional (fixed) signs. The signs are (possibly) descriptive ones for how the carousel moves. In the example above (1c), Jim displays three signs for different carousels: one that moves like a fast ‘Ferris-wheel’ (Line 16); one that is pushed up (Line 20); and one that goes like a roller coaster (Line 22). Jim takes the initiative of signing the movement of the carousel, and the SP repeats the sign with a more intensive movement (Lines 17, 21, and 23). In this way, they could appear to achieve a reciprocal understanding of the different carousels. Ben signs the ‘Ferries-wheel-carousel’ and the ‘push-up-carousel’ in Lines 17, 21, and 23 faster, larger, and with greater intensity compared to Jim’s signs. Since Jim has limited vision and hearing and appreciates the carousels, there is reason to believe that the feeling of riding the carousels has provided Jim with bodily tactile experiences. Ben’s repetition of the signs for carousels with a more intensive movement may be described as an expression of a mutual projection of shared content (Anward 2004).

When producing the sign for the ‘Ferries-wheel’, Jim points to himself and leans forward with his chest against Ben (Line 18, Picture 1). Ben signs ‘YES’ and leans forward with his hand toward Jim (Picture 2). He also touches Jim’s chest (Picture 3). This is in line with findings among people with acquired DB who use tactile sign language; the duration of a pointing towards an interlocutor underlines the function of being a request (Mesch and Raanes 2023, 142), and that pointing may go all the way into touching the other’s chest.

Picture 1

Picture 2

Picture 3

In the signing about the other carousels, Ben repeats the signs for them (Lines 21 and 23) and touches Jim’s chest directly afterwards. Finally, the sequence ends with Jim changing topic to ‘COOKIE’ (Line 24). Ben follows this topic shift (cf. Goffman 1981) and explains what will happen when having cookies (Line 25). Ben thus shows his compliance with Jim’s change of topic.

Repetition of a Sign Placed First in the Second Part of a Question-Answer Adjacency Pair

As demonstrated above, repetition is a useful practice for Jim and Ben in order to establish a mutual understanding about a topic, person, or activity. In 1a, b, and c, repetition of a sign with variation in speed, movement, and body positions served confirmatory purposes. In Example 2, the repetition of a sign is placed first in the second part of a question-answer adjacency pair.

Before the example starts, Jim has been told that he is to go on a trip. After this, Jim appears to ask what to pack. As mentioned, Jim does not have a conventional way of asking questions. However, Ben’s repetition displays that he is treating Jim’s initiatives as questions, and as can be observed, Jim is also happy with Ben’s answers. After each of Ben’s answers, Jim continues producing a list about things to be packed for the trip. Thus, Jim’s signs deal with his personal things, and Ben repeats the things that Jim goes through, with the addition of ‘BACKPACK’ (i.e., will be packed). Ben’s confirmation may be viewed as a case of ‘recycling with différence’ (c.f., Anward 2004). In Example 2, repetition is used to display affiliation and to confirm that the interlocutors are on the same page about the proceeding topic.

Jim’s signs of his personal belongings are a mix of conventional STS signs and homesigns. Throughout the example, Jim takes the initiative to use the signs for a personal thing or piece of clothing. After collaboratively producing seven adjacency pairs concerning what to pack, Jim returns to the topic of the travel activity. In Line 15, Jim signs ‘CAR’. Notably, Ben does not respond to the sign for car as a thing to be packed. Instead, Ben responds to this topic shift by telling Jim what will happen. Jim and Ben thereby construct a reciprocal idea of what the signs concern, i.e., whether it is a matter of packing things for the trip or about the travel activity to come. This orientation by Jim and Ben is manifested by Ben’s responding to Jim’s sign ‘CAR’ (Line 15), with Ben signing ‘CAR MOTHER’, i.e., that Jim will go by car to his mother (Line 16). The description of the activity is followed by Jim returning to producing a sign for another personal thing, his dinosaur (Line 17), to which Ben responds as in the previously established question-answer pairs about things: a repeated sign with an addition of the sign for backpack. No other notable differences than the sign ‘CAR’ (e.g., change in rhythm or body position) are found in relation to the topic shift in Example 2.

Using a Schedule as a Resource to Achieve Mutual Understanding

In Jim’s apartment in the residential home, a visual activity schedule—a version of a TEACCH schedule—is placed in a central spot. Jim’s schedule is a customized version; a box with the name of the day is colored in accordance with the original TEACCH schedule, whereas the rest of the schedule has a dark background in the columns. The dark background provides a greater contrast, which probably makes it easier for Jim to see the pictures of activities that are placed on the board. Another difference from a conventional TEACCH schedule is that Jim’s schedule has an overview of three weeks horizontally instead of one week on the entire schedule. When an activity represented on a picture on Jim’s schedule is finished, it is removed. Every third week, the pictures on the board are updated. At the point of the recording (Example 3 below), Jim and his SPs had reached the third and final week (Week 40), and the upcoming weeks, above the row of the third week, had not yet been updated (i.e., Weeks 41 and 42). Both Jim and his SPs take the initiative to use the schedule (see Picture 4).

Picture 4

The following example (Example 3) demonstrates how the schedule is used and how it affords the interaction. Jim and his SP Mira talked earlier that day about Jim going to visit his mother on Saturday. When they are about to bake cookies (Jim enjoys baking), Jim suddenly turns around and stops with his back towards Mira. Mira calls for Jim’s attention by tapping on his arm and asks ‘WHAT’. Jim walks away, and Mira follows him to the schedule, which is placed in another part of Jim’s apartment. The situation is captured by Ben, who walks around filming. The example below starts when Jim and Mira communicate about when Jim is going to visit his mother.

Jim relates to the schedule with his first sign ‘CAR’, followed by a pointing toward Saturday (Picture 4; Week 40, Box X), and then repeats the sign ‘CAR’ (Line 1). Mira responds by signing ‘CAR MUM’ (Line 2), a statement that means that Jim will go by car to visit his mother. Jim gazes toward the schedule (Line 3). Then, he continues by signing ‘TIVOLI’, followed by pointing to Sunday (Picture 4; Week 42, Box Y) and repeating ‘TIVOLI’ (Line 4). It should be noticed that no pictures have been set up for the upcoming two weeks (Weeks 41 and 42) yet. In Line 4, Jim is thus referring to an upcoming Sunday two weeks ahead (Week 42, Box Y). The third week on the schedule is the current one, and there are only activity pictures on Wednesday to Saturday, as the prior days have already passed and pictures for these days have been removed. The action by Jim displays that he is familiar with how the schedule is used. However, Mira does not seem to know when Jim is going to the Tivoli and responds ‘NO’ (Line 5). This makes Jim initiate a repetition, and once more, he signs ‘TIVOLI’ (Line 6) and points to Sunday (Week 42, Box Y), whereupon Mira gives the same answer, ‘NO’ (Line 7). At this point, Ben’s hand, who is holding the camera and recording, appears in front of the lens, signing: ‘YES YES YES’ (Line 8). Ben says aloud, ‘Yes, I think so’, with a short pause, and then continues with, ‘Twenty fourth’ (Line 9). Ben is here assisting Jim in his attempts to make Mira understand that going to the Tivoli is indeed an upcoming event on Sunday the 24^th (Week 42), the day Jim has pointed to on the schedule twice. Ben’s contribution is on the verge of being of a corrective nature (cf., Jefferson 1987) but is mitigated somewhat by him adding ‘I think so’ (Line 9). The turning point is when Mira directs her gaze towards the camera (i.e., towards Ben), then back to Jim and signs ‘YES’ three times (Line 10), and yet another two times (Line 12) as a response to Jim’s repeated signing of ‘TIVOLI’ and pointing to Sunday in Line 11. Mira’s confirmation is also upgraded, adding the sign for Tivoli: ‘TIVOLI YES YES YES’ (Line 13).

In summary, using the schedule, Jim, Mira, and Ben manage to successfully co-construct a reciprocal understanding of when certain activities will take place, despite the fact that the schedule has not yet been updated with pictures for upcoming events/weeks. The schedule affords Jim the opportunity to orient himself in time and activities, even activities not yet put on the schedule. Repetition connected to topics afforded by the schedule is thus efficiently employed by Jim as well as his SPs to secure understanding.