Information worlds of people with deafblindness
Nasrine Olson and Elena Maceviciute
Introduction. This paper explores the information world of people with deafblindness, i.e., a diverse group of people whose vision and hearing loss are of such severity that it is hard for their impaired senses to compensate for each other.
Method. An extensive interview study conducted in five European countries. It has examined the level, form and accessibility of information available to people with deafblindness. This paper draws on these interviews, and other material and observations, in providing general characteristics and the results presented here. However, the data and quotations presented in this paper are from the interviews conducted by the authors in Sweden.
Analysis. The analysis of the interviews was done using the coding scheme based on the concepts of small worlds and the theory of information world looking for emerging themes. The scheme was flexible and additional themes were included into it during analysis when they emerged from the data.
Results. The study found that while the lives of most people are facilitated by an abundance of information in various forms and often in taken for granted format, this is not the case for those members of the society with deafblindness who need such information the most. The means of signification and information sources are limited for people with deafblindness not only because of dual sensory impairments, but mainly because of the limited opportunities afforded outside their small worlds.
Conclusions. The improvement of information infrastructures aimed at people with deafblindness will benefit the society and its democratic foundations as a whole and will strengthen the participation of people with deafblindness.
We form an understanding of the world around us either through direct sensory perception (somatically) or by receiving information about the world, indirectly. Intrinsically, the symbolic process, i.e., making ‘certain things stand for other things’ (Hayakawa, 1952, p. 25) is an integral part of our lives and ‘language is the most highly developed, most subtle, and most complicated’ form of symbolism (Hayakawa, 1952, p. 27).
Sight and hearing are often seen as the primary and most widely recognised human senses, at least in terms of their importance for communication. The lack of these senses would have major implications for the way we communicate with people and explore the world. Yet, there are a sizable number of people with dual sensory impairments who cannot capture or receive information through these primary senses.
Deafblindness, also known as a dual sensory loss, refers to a unique combination of vision and hearing loss of such severity that it is hard for the impaired senses to compensate for each other. Thus, deafblindness is a ‘distinct’ disability (Nordic Centre for Welfare and Social Issues, 2018; Dammeyer, 2014). It is estimated that the number of people with deafblindness can be between 0.2% and 2% of the worldwide general population (World Federation of the Deafblind, 2018), which indicates a broad range of from 15 to well over 150 million people. More accurate estimations are difficult to come by owing to variations in definition, a lack of consistent statistics, and inaccurate diagnosis. Most people with deafblindness have varying levels of residual sight and hearing, and rely strongly on these residual senses.
Due to different development conditions, typically, two different subgroups are distinguished, congenital deafblindness (those who are born with dual sensory loss or lose their sight and hearing early in life before developing language) and acquired deafblindness (those acquiring deafblindness later due to illness, accident or aging). There are many challenges for individuals with deafblindness to fully participate in society, due to the way the society and the environment is organised.
This study is conducted as part of a broader EU-funded project, SUITCEYES, which aims to create improved and interactive communication possibilities for people with deafblindness .
As part of this project an extensive user study was conducted. We apply the theory of information world (Burnett, 2015) and small worlds by Chatman (1999) to the Swedish part of this data set to answer the following research questions:
- What are the characteristics of the small worlds of people with deafblindness?
- What means of signification and tools are used to connect these small worlds to other information worlds?
- What actors are involved in the information worlds of people with deafblindness?
The United Nations, in the Universal Declaration of Human Rights (UDHR), already in 1948 proclaimed basic human rights as a common standard of achievement for all people including social and cultural rights (article 22); the right to education (article 26) and a good standard of living even for those with disabilities (article 25).
Further development of this emancipatory approach is seen in the social model of disability as opposed to the ‘medical or individual model’. While the social model defines ‘disability as a social creation’ or relationship between people and disabling society, the medical model emphasises ‘the individual deficit’ (Shakespeare, 2017, p. 197). As a relatively recent review of literature has shown, the bulk of research on deafblindness relates to the medical disability model and how it leads to the problems of communication, works as a barrier to information access or social interaction and becomes a cause of many other health issues (Dammeyer, 2014). In connection with this model, some studies focus on the difficulties of information acquisition and access as well as communication (Hersh, 2013; Chen et al., 2018), but also explore different means, devices and applications designed to help in solving these problems (Woolsey, 2017; Hersh, 2018).
Another systematic literature review has detected a bias in research literature where the voices of people with deafblindness are ignored. They are commonly identified as a most vulnerable group at risk in relation to various negative outcomes, while people with deafblindness do not regard themselves as permanently vulnerable, but more as being resilient and capable of devising various coping strategies (Simcock, 2017). The most productive coping strategies seem to be related to various communication means and aids.
Hersh has presented the means of communication used by people with deafblindness in accordance with their abilities and surroundings from the spoken and sign languages (quickest) to the usage of deafblind block alphabet and Finger Braille (slowest). (Hersh, 2013, p. 447).
These different means and technological devices, such as mobile phones, hearing aids, tablet computers and other aids (e.g., a white cane) are employed in communicating with other people and surroundings. Often the communities of people with deafblindness create their own means and languages for communication (Edwards, 2012; Willoughby et al., in print). The most important means of getting information about surroundings are people helping to appropriate ‘the wide world’ and, to a great extent, guide dogs (Hersh, 2013).
The recent study of the coping strategies of people with deafblindness has shown that in addition to using devices for getting data from surroundings, constant information sharing about the disability with the people in the nearest surrounding and the wider community was an efficient way to organise life and get support, but required much energy and effort. The lack of knowledge about the nature of deafblindness and its consequences demanded constant education of others and made the respondents feel like the only experts on the subject (Ehn et al., 2019). This challenge revealed the resilience of the people with deafblindness and the lack of understanding on the part of officials, experts, and service providers. Information sharing or rather enlightening others was a paradoxical strategy in information behaviour of people with deafblindness as they were imparting knowledge, rather than receiving it from others.
Jaeger and Burnett (2014) have pulled together the concepts of ‘small worlds’ by Chatman (1992; 1999) and the public sphere – the broad social world with open communication by Habermas (1989). They have suggested a holistic framework of information worlds to explore how information builds and shapes the social fabric of people. This framework and its conceptual components can be applied to understanding social contexts of people with deafblindness.
Chatman conceptualises small worlds as everyday activities of a small social group that takes things for granted and determines the interests and activities (including information activities) using norms applied in this small world (Chatman, 1999, p. 213). According to Burnett and Jaeger (2008), Chatman has considered an individual in a very limited social context, but has ignored the connections between different small worlds that are interconnecting with each other and produce a larger information world.
The theory of information worlds considers individuals with their abilities, psychological features, personality traits and their interaction with information. It also acknowledges the social context of the individual where information resources are created and used. ‘The domain of signification, language, discursive practices, modes of representation’ which provides tools that enable information processes (Burnett, 2015, p. 13), is especially important for people with deafblindness. This holistic approach also allows us to consider the ways in which information needs, behaviour, creation, and use ‘simultaneously depend on three different but intertwined domains: the individual, the social, and signification.’ (p.13)
The information worlds of people with deafblindness differ significantly from that of others, as the language and discursive practices are defined by sensual channels available to people dwelling in them. Social contexts have not been very accommodating to them, although some resources, including social policies, tactile sign languages, haptic modes of communication, information technologies, and support systems are produced by various public and private institutions, commercial actors, social groups and individuals. Signification practices that hold different information worlds together are difficult to develop and have limited application space, but they exist and people with deafblindness are often actively involved in their production, distribution and use.
The information worlds of people with deafblindness are undergoing considerable change due to the new approaches to equal opportunities, societal norms of openness, technological possibilities enabling production and use of information products using haptic communication signals, and tactile, thermal, vibrational signs. There is a variation in the information worlds of different individuals depending on levels of impairments, types of underlying causes and individual traits.
We have applied the theory of information worlds to explore the ways in which people with deafblindness communicate with the surrounding world; what kind of signification practices (including, but not limited to, language practices) they apply to facilitate information access and use (Burnett and Jaeger, 2008); how they link together their small worlds with the worlds of others and how these other larger information worlds interact with them to connect into one common social sphere.
As part of a large, EU-funded technology development project, SUITCEYES, 81 semi- structured interviews were conducted in five European countries (Sweden, the UK, the Netherlands, Germany, and Greece) by different team members, using the same interview schedule. The participants were mainly people with deafblindness, but some interviews with family members, experts and professional care-providers were also included. The typical length of the interviews was from 60 to 90 minutes and some even longer. All interviews were conducted in local languages and recorded. They were transcribed, anonymised, and translated.
The participants were located through the associations of people with deafblindness, aid agencies, educational institutions and other relevant organisations. Each national team had to comply with the procedures of ethical research in each country to communicate with their respondents and have obtained ethical clearance. All participation in interviews was entirely voluntary and informed consent forms were used.
In addition to these interviews, extensive information and observations have also been gathered over the past two years as an integral part of the bigger project.
This paper draws on all these interviews, observations, and other material in providing general characteristics and the results presented here. However, the data and quotations presented in this paper are from 16 interviews with 14 participants conducted by the Swedish team as presented in Table 1.
|Country||Total||Sex||Living arrangements||Age group|
|M||F||On own||With family||Res. Home||Unspecified||< 20||20- 39||40- 59||>60|
The interviews pursued the aim to identify the needs of respondents for orientation in familiar and unfamiliar spaces, for communication with smaller and larger groups of people, for increased autonomy and the development of the range of activities they would like to conduct. Special attention was paid to the technologies they used and the sign systems available for meaning creation.
The analysis conducted for this study was done using a coding scheme based on the concepts of small worlds and the theory of information world looking for emerging themes. It involved an iterative reading, re-coding, discussion and revisiting the data in multiple rounds. The scheme was flexible where some of the codes used were drawn from the theory while others were emergent from the data.
Interviewing people with deafblindness is a complex process and requires extended planning and time. We did not interview individuals with congenital deafblindness directly, but interrogated specialist professionals working with them or their family members. All interviews were mediated in one way or another: by a hearing aid, a Braille device, a software programme, text telephony, human translator, or a videoconference tool. This mediation entails some methodological concerns; we therefore controlled the reliability of the data by comparing the different interviews with one another and the mentioned additional interviews, observations, and other material that have been gathered over a period of the past two years. Although this related material has not been acquired for the purposes of this paper, it has given us a better understanding of the related modes of communication, the difficulties of orientation or people recognition, role of sign language translators, translation process and other important issues.
Additional limitation in this study is also brought by voluntary participation - our respondents were mainly interested in the project and its outcomes and most probably represented an active and engaged group interested in this study.
I was born deaf. ... I was 56 when I became blind. Every day I dream that I can see again. That's when I sleep. I think that I am driving a car as usual, I dream very much about that and then I wake up, I am blind again
When I became blind, so all my life… well, it disappeared. It felt like I died...
I am very curious too... life is exciting. I always want to learn new things; I want to live long. I want to be 140 years.
(Quotes from an interview with an 81 year old male participant).
The study found a great diversity in abilities, modes of communication and ways of interaction with the world among the participants. As in other studies, we have found that the biggest difference has emerged between individuals with acquired deafblindness and those with congenital deafblindness. Therefore, we present first the results of interviews with people who had an acquired deafblindness and then about those with congenital deafblindness.
Participants with acquired deafblindness
Many of the participants had lost their sight or hearing due to illnesses such as Usher syndrome, others due to accidents and age-related issues. In many cases, it was a progressing impairment resulting in worsening hearing and vision.
Deafblindness was perceived as a significant barrier to communication and information reception:
If I take my implants off, I can't hear anything, it's totally quiet. I try to look around now it's all fogged over, misty, it's like, you know when you try to clean your car window in the morning and it's all clouded over. If you can imagine like that all the time... I can't see objects; I have to do everything through touch. (Male, 60-64)
The primary mode of communication was via tactile sign language. Some who had a spoken language prior to acquiring deafblindness, spoke orally and those with residual hearing listened to conversations through various media (e.g., from loudspeakers to cochlear implants). Many of the study participants who had acquired deafblindness at a young age were taught and were able to use braille. As a complement to the use of sign language some also used social haptic communication, which involves conveyance of short messages on the back and other appropriate parts of the body. Some also used text-telephony and intermediary services. Diversity in the group was not limited to abilities and communication modes, but was extended to living situations, life styles, education, and experiences.
Some of the participants lead very active lives, with employment, extensive travelling, sports activities (e.g., swimming, skiing), and hobbies (reading using braille, cooking, gardening, crafts, party games, solving crossword and sudoku, model building, music composition, even photography).
The backgrounds of the participants also indicated educational (many with higher education, e.g., in psychology, pedagogy, etc.) and employment (e.g., graphic designer, a computer scientist, educators, and more) diversity.
The level of support that they received also varied but this particularly was tied to the country in which these participants lived, e.g., assistance in Scandinavian countries was perceived as very good. There was also a difference in the participant’s attitudes regarding the forms of support, e.g., the participant in Greece preferred support by family members while in Sweden reliance on state support was more common.
A number of issues and aspects of life were brought up as important, but the study found a lack of information and structural setting that would enable the participants to fulfil their aspirations. From the responses received, it was found that adequate information is missing for simple everyday activities.
Most of us capture a huge amount of information about our surroundings by a glance due to domesticated, taken for granted information clues embedded in the design of everyday objects or spatial planning; information clues that are missing for people with deafblindness. One of the participants who had very limited residual sight, could not see the text on a typical newspaper. This individual took pictures of the pages and then used magnifying facilities to enlarge the text. She explained: ‘... it would be nice to have some indication of when I hold the paper correctly to read it. I just take a picture of a piece and I am not certain that I get all the text, I may take the picture too much to the right and then I miss some text.’ (Female, 50- 54). In many cases a raised dot on the top right-hand corner of a page would easily provide simple orientational clues even to these members of society. This group also needs such information in order to function and to orient themselves or for enjoyment and improved perception and even feeling included. Many participants expressed the need to know about the surroundings:
when I go out I'm always asking about things .... What I do miss is landscapes and beautiful views because I used to do a lot of landscape photography and I do miss the beauty of colours in the open air and out in the woods and stuff. (Male, 60-64)
Knowing the colours was particularly important for many of the participants: ‘colours are very important... because I need to know if someone is wearing a very bright colour or very dull colour or if there's a bright object or bright glass object or whatever.’ (Male, 60-64).
Everyday activities and orientation
As can be expected lack of sight and hearing has a profound effect on the ability to move around freely. Some participants kept active despite their condition. One described that walking around was possible: ‘As long as there are no unexpected obstacles that I do not know of, and as long as no one else disturbs me, it is no problem.’ (Female, 40-44). But many expressed problems: ‘I never go outside on my own, like for a walk, I can't so I just go outside if I have some purpose. It's like... I never go for a walk.’ (Male, 65-69).
Participants had detailed strategies for organising their environment to facilitate their daily activities by designing their home environment and its contents in a suitable manner and keeping things always in the same place. But not all aspects of life could be organised and unexpected displacements could happen: ‘It is easy to lose things, to look for things is not easy.’ (Female, 50-54).
Each label, each street name, many designs, and arrangements bear information for those of us who can see and hear but not for those who lack those senses: ‘Even trying to pour hot water into your glass, how do you know when it gets up to the marker, but then again, I use an indicator to do that, because otherwise it would just flow over.’ (Male, 60-64). Even in most essential functions, information is lacking. One participant mentioned: ‘The accessible toilet can be a real pain at times because they don't have things in the right places. They keep changing the blowers or where the hand towels are and so on...’ (Male, 60-64). The simplest things are not adapted to the needs: ‘...I am thinking about washing machines. They have more touch buttons now. You cannot feel where the buttons are and even if you find the buttons, you cannot see what is on the display.’ (Female, 40-44).
The participants also noted increasing difficulties when their impairments progressed:
It is doing everyday work that has become more difficult when my sight becomes worse - like crossing a road - I cross a cycle path risking my life. I would like to continue walking in the forest, but it is difficult now, I got lost a month ago.(Female, 50-54)
Our participants have made major adjustments in their lives because of their condition: ‘I have adjusted a lot to make it easier to live, that means I have become a minimalist. My clothes are mostly black now. Simple, classic and fine quality.’ (Female, 50-54) Accepting change and adapting to new circumstances helped to cope by inventive solutions, e.g.,: ‘I write Braille for spice jars and I print very large labels that I attach to glass jars for flour, sugar and stuff.’ (Female, 50-54)
A further important strategy involved careful and detailed planning. One participant said:
You organize every time we go somewhere how people will sit around the table or in the places or if there's a sofa or cafeteria, if there are three people or four people, five people... Then you say, could everybody please talk one per time? (Female, 55-59)
Much of this organisation would be time consuming and problematic: ‘The biggest problem with all aids is that it almost always takes time and sometimes it is difficult to get help when something does not work.’ (Female, 40-44). Therefore, plans often need to be made well in advance.
Not only the individuals with deafblindness need to have strategies for their lives to work, even their family members and contacts need to be mindful of certain aspects. Placing one’s bag down could create an obstacle, moving items around would create difficulties for finding those items. A specialist care provider mentioned: ‘I can see that people very often forget to tell him, now I'm in the room and now I'm leaving the room.’ (Female, 50-59).
Equal opportunities and treatment
There are many manifestations of inequality that we identified in the interviews. They relate to different spheres of life, such as working conditions, equality in relations or lack of understanding of the disability in basic support structures.
While many of the participants were involved in some form of employment, a good portion of them worked on a part time basis and some had lost their work:
I was a project team leader, so I was earning good money and suddenly it just went downhill. Then, you know, going on to benefits, disabilities benefit just to keep living is kind of difficult ... It does get frustrating when you want to perhaps earn a bit of money but you can't. (Male, 60-64)
Considering the extensive experiences and educational backgrounds of some of the participants, it seemed a loss to the society not to take advantage of this resource while at the same time creating a poor standard of living for a group. While many of them cannot work full time, they are hindered in conducting the work that they are able to do by regulations that are not adapted to consider this group’s specific circumstances. Travel and movement outside the home is not easy for this group, however the society does not support alternative modes of work: ‘At work I have deaf-blind interpreters ... I can work at home because I am an IT-nerd and have a fine computer with tools. But at home I do not get the help I need.’ (Female, 50-54).
Many participants expressed a wish to be accepted and treated equally as a member of the society. One participant found information provided by his wife helped include him in social gatherings: ‘I have a wonderful wife here who is very good at describing things to me [...]. It gives me that extra bit of information ...; and to be equal as well’ (Male, 60-64). One participant found openness important and said: ‘If you are open you can get that equality.’ However, at times the participants were overlooked:
Well, the other thing I have noticed, culturally [...] whenever I'm with somebody, a personal assistant or a friend, nine out of ten times the shopkeeper will always talk to my assistant rather than direct to me, and that annoys me. (Male, 60-64)
The institutions providing services often lack the required approach to this group. A participant explained this through an experience in a hospital:
I end up in hospital for one and a half months and... there's nothing worse than being woken up at two o'clock in the morning, putting your implants on, trying to find out what they’re trying to do to you like blood pressure, injection or whatever. So, it's surprising how many of the hospital staff don't understand deafblindness. (Male, 60-64)
Information and communication technology tools and apps
There are a number of functionalities made possible by digital media, but they are not easy to use for our respondents. When a participant who was an avid user of technology tried to demonstrate the use of some of the apps, his voice instructions were misunderstood and there were problems with his touch navigation. Even usual programs are not easy to use: ‘...some people say ‘I'll google that’ and then all problems are solved, but it is not that easy for me. I cannot google...’ (Male, 65-69). Learning may take a long time: ‘Sending emails... I'm still learning; it’s taking me a long time to get to that stage actually because it's all touch screen as you saw, and that... it doesn't function the way you want it to.’ (Male, 60-64). Still, many of the participants were tech-savvy and actively tried to find useful tools: ‘I am curious, I test new apps... I do not download any application just because someone recommends it every time, I choose by myself.’ (Female, 40-44).
The type of information provided by technology is not geared towards people with deafblindness:
I use Google maps and GPS, but the information it provides is either too late or too early. If I, for example, go in the street and need to turn right, the signal comes late and I have already missed the turn. It should be better synced and come exactly in time. (Male, 40-44)
People with deafblindness, conduct some actions at a much slower pace, hence some of the available apps or games with faster pace or those based on visual interactions cannot be used by them: ‘I tend not to play any games on computers nowadays, no, no, because mainly they are all visual and I just get very frustrated if I can't do anything...’. (Male, 60-64).
An additional problem is the fast pace of changes and upgrades. Upgraded software needs to be adjusted and fine-tuned to suit the user’s abilities and needs. These complicated adjustments need to be repeated every time an upgrade is made.
Despite the difficulties information and communication tools play a core role in enabling access to information and interaction with society: ‘It would make life very difficult without them. I use them every day, it's a part of my life in a sense. My access to the outer world... the iPhone and iPad are a very important part of my life.’ (Male, 60-64).
While new technologies and collection of behavioural data have created concerns about privacy in general, the situation gets worse for people with deafblindness. One participant, when asked about wearable assistive technologies expressed concern about the risks of being bugged and his behaviour recorded. Many of the interviews also involved human mediators. Responding to the questions through an interpreter a respondent seemed uncomfortable conveying his view ‘My assistants... well, what can I say, it is a bit funny. I have confidentiality, don't I?’ (Male, over 70). He then changed the topic showing that a real confidential non-mediated conversation was not possible. Another participant expressed concern by saying: ‘I can't read correspondence or my post, I have to have somebody else and that's another thing, you don't get any privacy anymore.’ (Male, 60-64).
Participants with congenital deafblindness
According to the study informants, in some countries, for example in Sweden, there are dedicated homes that provide special support for this group. Each unit typically houses a small number of people. One such unit housed five people who each had a dedicated primary care provider as well as other staff. While collective activities would take place, the immediate world of each of the five residents consisted of the individual and the primary care provider and their interpreters. The language ability varied considerably among the residents, one resident had only a few concepts in his vocabulary, some of the others had a much broader vocabulary using tactile sign language. None of the five could sign in full sentences. As an example, signing a shoe could convey the wish to go for a walk. While the use of formal language in tactile signs was very limited, they had other means of communicating or other forms of discursive practices through their bodily reactions and movement.
The residents with congenital deafblindness at this home would get involved in many daily activities: bathing, eating, gymnastics, exercises for fine-motoric, wood work, sanding, pottery, building various things, music, dance, painting, etc. While the staff would communicate with their charge to plan each day’s activities, the choice and time of activities were typically left open to the residents and decisions were made in consultation.
While these five residents had no hearing, still they reacted to music and rhythm and enjoyed playing music. Many instruments were available including drums, guitars, synthesisers, and the simple maracas that were liked by many. They also had access to mobile phones, and although completely deaf, some of them enjoyed using the phone for playing music, which was baffling to the staff, one commenting ‘they have much more [abilities or substituted senses] than we can understand’. (Female, 50-59). They were said to also have a good understanding of the people around them and would feel uncomfortable with strangers and would easily recognise if a person was known to them or not: ‘yes, yes...they are incredible that way, to recognise all people... usually a greeting is enough. Then they know which person it is’. (Female, 50-59). Usually the group members communicated their discomfort with strangers by making noise, shouting or even self-harm. But the level of sociability of some could be different. A professional interpreter described the situation of a young man with congenital deafblindness in his thirties: ‘For him to know that people are coming and going is interesting, if it's also possible to know who is coming and going it will be even more interesting. He's a very social guy...’ (Female, 45-54).
The communication in this group is mainly with their primary contact, while communication between two individuals with congenital deafblindness is not common. The communication would involve bodily movements and physical contact. These five individuals were described as curious, with interest to explore the world around them through touch and other senses, although mainly when they were in familiar spaces and in contact with a familiar person. Without this contact or familiarity, they tended to sit still and not engage in any activity.
Discussion and conclusions
Burnett (2015, p. 7) proposes that in recent years the focus of the field of library and information science has extended to conceptualise information broadly ‘as one of the fundamental building blocks of a culture, something not limited to materials collected and housed within library walls, but central to day-to-day activity in all settings, inextricably interwoven with human interaction’. The study of people with deafblindness in library and information science would be a part of these fundamental building blocks of fair and inclusive society that embraces diversity. The social model of disability cannot change the physical impairments, but provides a wider look at our social environment and includes efforts to make it friendlier to all of us.
Chatman's theoretical framework sought to explain why people use, or did not use, information within specific social contexts. Our study is related not to what they use or decide not to use, but rather to what is made or not made available through affordances of objects and environments that are designed mainly for the members of the society with no impairments. The social norms and conventions produce a significant influence on people with deafblindness, but they come from outside the group and reflect the limited understanding within the outside communities. In some cases, it is even difficult to speak of any group at all, even when people with deafblindness meet in the same space.
This is especially true for congenital deafblindness, which seems to involve the most constrained small worlds. According to Chatman,
The small world is a social group in which 'mutual opinions and concerns are reflected by its members' and in which the interests and activities of individual members are largely determined by the normative influences of the small world as a whole (Chatman 1999, p. 213).
But in the case of congenital deafblindness, the ‘small world’ acquires a different connotation of severely reduced communication environment. As a rule, persons with congenital deafblindness do not speak in the normal sense of the word, but communicate nonetheless with others (usually with carers or only with one person) through a version of tactile sign language or bodily gestures. They can find their way around familiar surroundings. One cannot be sure if there exist any mutual opinions or interests, not to speak of normative influences, but there are some activities of individual members that enable interaction with others. Despite this, the range of activities is limited. The caregivers or family members think that they would like to do more from reading their body language, facial expressions and behaviour. Useful communication systems and information media for this group need to be interactive, stimulating their curiosity and involve vibration and other physical movements that can be perceived with senses other than sight and hearing.
As our research shows, a small world does not need to be dependent only on wealth, education, or social circumstances, but rather biological and sensory variations can be its defining factors. The small world in Chatman’s sense emerges on the basis of these sensory variations when people live in the same territory for a longer time and create a common language to aid communication between themselves rather than with the outsiders (Edwards, 2012). We have seen little of similar development in this study, but what was noticed is a difference between the information systems used to keep informed or interact with, and the level and form of information made available to individuals with and without deafblindness. These options are limited for people with deafblindness in two ways: limited physical accessibility when appropriate tools and information supporting structures are lacking (e.g., informing about text orientation or delayed signals about street corners); and lack of understanding of dual sensory impairment by the general public and even more importantly by the care and social support systems (e.g., speaking to a carer instead of the person with deafblindness, general directives not designed for considering this group, or rigid employment rules).
The first limitation is one of the main factors closing people with deafblindness in their ‘small world’. To aggravate the matter, much information which is required in the conduct of daily routines is typically conveyed to the rest of us unnoticeably and seamlessly via audio and visual cues, however, the same information is not made accessible to people with deafblindness. There is information that we receive constantly without a second thought. Someone, somewhere, at some point has decided that such information is useful and needed to facilitate our lives. We have structured our environments to enable easy access to such information. However, this is only done for some of us, many others within the society are left out while this information may indeed be more important for them to receive. For example, if there was no audio notification issued by the microwave oven, we would still see that the oven has stopped, while a person with deafblindness will not be able to see either.
The sound made by a microwave oven is designed for those who can hear and does not fulfil a purpose for those with deafblindness. Similarly, there is a need for systems that afford informative clues for people with deafblindness without fulfilling a purpose for those who can see and hear. For example, there is no need for sighted people to have systems that would inform them about the level of hot water in a cup when they make tea. There is also no need for them to organise the environment for orientation by touch. Designs that incorporate such informative clues are however very much needed by those with deafblindness. We do not question the addition of sound notifications; however, provision of haptic information is often seen as an extraordinary unnecessary effort.
Chatman argues that individual members of a small world tend to follow the norms of information access and exchange established in their world, as such ‘norms give definition and meaning to available information’ (Chatman, 1999). People with deafblindness often have no choice rather than limit themselves to information made accessible to them while at the same time wishing that improvements could be made. They are ready, when possible, lead the efforts, but have no possibility to influence the long-established structures and norms to a greater extent.
There are no proper means of signification for the people with deafblindness on the elementary level, but more complex intellectual interaction is even more problematic. Naturally, people with deafblindness do also need access to news, databases, search engines and knowledge, many of which are not designed with accessibility in mind. There are tools that open up these possibilities of wider information worlds for people with deafblindness who are embracing them, actively testing different options and even inventing their own. But each such tool carries sets of limitations with them, and so far the most reliable leads to connect with the outside world remain other people.
Here, the concept of a lifeworld that 'stands behind the back of each participant in communication' and 'provides resources for the resolution of problems of understanding' (Habermas, 1992, p. 108-109) becomes important. Lifeworld is expansive, as 'members of a social collective normally share a lifeworld' (Habermas, 1992, p. 109). The lifeworld of the people with deafblindness are often limited to the meetings with the actors that are coming into contact with their small worlds: family members, carers, teachers, providers of equipment are the members of other tangential small worlds. On the other hand, people with deafblindness also take proactive steps to get into contact with other environments by engaging in sports, arts or other activities, travelling or forming associations and trying to impact the actors in the larger information world. Thus, from the level of basic need for information about the immediate physical surroundings, through the need of communicating with people in proximity, the people with deafblindness reach out to the wider community and the world and try to become part of the public sphere. What they need is the societal structure for the discussions of the wider-scale context of information access and exchange with this information world. This lack affects the amount of public discourse, in which they can participate, affect and change.
Based on this study, the authors find that in order to safeguard democratic foundations of the society and strengthen the inclusion and participation of people with deafblindness, there is a need for improved information infrastructures that afford rich information worlds for all members of the society rather than privileging some and disabling others.
Special thanks go to the study participants who shared their valuable insights with us. Without them this study would not have been possible. The authors are grateful to colleagues, members of the SUITCEYES project, who took part in the conduct of the interviews in the broader study. This work has been partially funded by the European Union’s Horizon 2020 research and innovation programme under grant agreement No 780814 SUITCEYES.
About the authors
Nasrine Olson, is a senior lecturer at the Swedish School of Library and Information Science, University of Borås, Sweden. Her research interests (among others) lie in critical analyses of information practices and conceptualisation of information infrastructures in the context of accessibility and inclusion. She has led a number of projects and acted as a co-leader of the Social Media Studies (SMS) program at SSLIS, and is currently the coordinator of the SUITCEYES project. She can be reached at firstname.lastname@example.org.
Elena Maceviciute, Swedish School of Library and Information Science, University of Borås, Allegatan 1, Borås, Sweden and Professor, habil.dr. at the Digital Media Lab, Faculty of Communication, Vilnius University, Saulėtekis ave. 9, Vilnius, Lithuania. She received her PhD from Moscow State Art and Culture University and her research interests are in the areas of organisational information and communication, digital publishing and reading, digital inequalities, digital libraries and information management. She can be contacted at email@example.com.
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