This paper presents findings about identity, voice and representation arising from a broader ethnographic study with disabled teenagers who use AAC. This was informed by theory from childhood studies, disability studies and anthropology.
The author spent 18 months carrying out qualitative, predominantly ethnographic, research with teenagers aged 10-19 years who use AAC. Participant observation and extended narrative conversations with 9 key young people, in a variety of contexts yielded rich data about how they see themselves and how they are seen by others. Additional input from other teenage AAC users, parents and school staff contextualize this. Three adult AAC users were research advisors, and their commentary at many stages of the study was helpful.
This paper focuses more narrowly on specific aspects of aided communication, how the teenagers perceive that their use of AAC impacts on their identities, how individuals' voices emerge in co-constructed conversations and issues around representation.
This paper presents findings on issues of identity, voice and representation, arising from a broader ethnographic study that explored aspects of identity and the lifeworlds of disabled teenagers using AAC and living in England. The study was informed by theory from childhood studies (James 1986, 1995, 2007, Percy-Smith & Thomas 2010) disability studies (Paterson & Hughes 1999, Shakespeare 1996, Thomas 1999, Watson 2002) and anthropology (Goffman 1959, 1963, Clifford & Marcus 1986, Csordas 1994, Cohen 1994, Jenkins 2004). It used participant observation and other flexible qualitative methods to investigate how young AAC users see themselves and are seen by others (Hammersley & Atkinson 1995, Aull Davies 1998).
The study arose out of my interests in people with communication disabilities, in using participatory research methods with children and young people (Thomas & O'Kane 1998) and in anthropological conceptualisations of individual identity, in particular ideas about selfhood and personhood (Cohen 1994, Jenkins 2004). I was curious to ask young AAC users how they saw themselves and their social relationships and whether they felt that using AAC had any particular impact on their lives and how others see them. Several authors have noted that disabled children and young people (and in particular those with communication and cognitive impairments) are commonly excluded from research (Morris 2003, Rabiee et al 2005). In response to this, I was also keen to use long-term, flexible and responsive qualitative methods in order to maximize opportunities for the teenagers themselves, rather than proxies such as parents or teachers, to be meaningfully included in the research process.
Detailed reports about the main study have been published elsewhere (Wickenden 2009, 2011a, 2011b). Here I aim to address the particular issues that arose in relation to: how non-speech communication works in interactions, types of voices, co-constructed conversations and issues around agency, authorship and representation. After a brief theoretical introduction to key aspects of voice, AAC and identity, I will provide an overview of the main study before presenting and discussing the specific findings about communication, voice and representation in detail.
Theoretical background — voice, communication and identity
A person's voice is often seen as a window into their mind, and human beings have been seen as definitively 'homo loquens' (Fry 1977). Thus, being able to talk is seen as part of being human, and this ability is often privileged over other aspects of humanness. The concept of 'voice' is being used increasingly in considering issues around rights, autonomy and inclusion in both the disability arena and in relation to children and young people (Davis and Watson 2002, James 2007). Of course it can be used in both literal and metaphorical senses. Both are important when considering the participants in this study who may be perceived as not having 'a voice' either in the conventional physical sense or metaphorically. Because of their physical impairments they have unusual and alternative voices. Conventional meanings of 'voice,' which assume naturally produced speech as its means of expression, have to be re-examined in this context. Clearly AAC users can and do have 'voices,' although these are rather different from those of natural speakers. The question then is whether these alternative voices are recognized and heard in the same ways as others. Or alternatively, whether having a different voice is treated by society as implying other kinds of 'difference' and as having implications in relation to the person's identity and the quality or value of their life (Mackenzie, Leach and Scully 2007). The issue of whether or how the 'real' voices of young people who talk in unusual ways can be represented accurately and sensitively will be addressed later in this paper. As Paterson and Hughes (1999) suggest, we live in a verbal world where those who can talk, the 'vocal bodies', are often exclusionary in the way that they structure society and 'norms of communication and norms of intercorporeal interaction reflect the carnal needs of non-disabled actors' (Paterson & Hughes 1999:604).
Augmentative and alternative communication (AAC)
Usually people who are unable to use natural speech well or at all spontaneously develop informal alternative ways to express themselves (e.g. facial expression, eye and body pointing, gestures), and these are often supplemented by more formal (and taught) low-tech modes, such as signing, picture or symbol books and boards. Many people also use high-tech modes in the form of computer-aided devices, often called 'voice output communication aids' (VOCAs). The latter produce an electronically generated voice and can be of various designs and types, matched to the physical and cognitive skills and preferences of the user.
Some children who have physical impairments develop enough speech (although perhaps very unclear or only single words), to use with family and close friends. The introduction of AAC does not prevent their use of these words, and indeed may enhance it. They gradually develop their own way of 'mode-switching' between their own speech and their aided communication systems, as needs dictate and they choose. Similarly, those with no natural speech learn to mix modes, usually using both low-tech and high-tech methods. All the participants in the study described here use more than one method of communication, and usually individuals favour some over others for pragmatic reasons.
Very often AAC users report that their low-tech systems are much quicker and easier to use than the high-tech ones, so they opt for the former when talking to people who know them well enough to understand the more elliptical and individual style of these messages. These often demand a high level of skills and knowledge of the person from the conversational partner. In contrast, high-tech VOCAs are slower and more physically effortful, but more comprehensible to strangers, and are thus essential when there is no familiar person around to mediate for the user.
Apart from natural gesture and facial expression, the most commonly used low-tech method is the 'communication book'. These are individually designed in a photo album format with up to several hundred pictures or symbols organized thematically (e.g. pages for my family, my classmates, foods, places, sports, emergencies etc). In a conversation, the AAC user indicates by eye or hand pointing, to the conversation partner, which page to turn to, and then on the requisite theme page, to the target word. Some users and their carers/assistants learn to use this system extremely rapidly, using a series of colour and position codes as shortcuts. The disadvantage is that it takes a long time to construct a sentence with grammar. Often, the AAC user depends on their conversational partner to co-construct their intended meaning from a small number of key words, e.g.
Symbol output (AAC user) when, go, shopping, where?
Mediated message (Conversation partner) You mean what time are we going shopping and which shopping centre are we going to?
Another commonly used low-tech method is the Etran frame. The frame is a large perspex board with letters, numbers and punctuation arranged on a grid around the periphery. There is a rectangular window in the middle. The conversational partner holds the frame up so that the AAC user can 'eyepoint' at letters through the frame. This obviously requires the user to have good literacy skills, as well as the ability to concentrate well and eyepoint accurately. Once both user and conversational partner are skilled with the system, a number of shortcuts often develop, e.g. the listener may guess halfway through a word or phrase.
AAC user Listener C, H, O, C (eye pointing the letters via the frame) Chocolate? You mean you want some chocolate?
AAC user (nods yes)
This takes trust and good judgment in the partner, about when to guess and when to wait. Once people know each other well, this can be a very speedy process, and again, is much quicker and less effortful than the high-tech systems. However, it is still very tiring and requires intense concentration from both parties.
There is an increasing range of high-tech communication aids (VOCAs) of different designs, and the decision about which is suitable for a particular person is complex and multifactorial. There has been a rapid improvement in the technology in the last 10 years, so that many devices are now computer-based and have huge memory capacity, so that the user can, if they have the cognitive skills to do so, access many thousands of words and phrases, as well as linking to the internet, using e-mail and a mobile phone through the device.
The quality of the electronically generated voices has improved greatly, and most models allow the user to choose from a number of voice options (e.g. age and gender appropriate), and some also allow a choice of American or British accents and some other aspects of 'style'. However it remains that, because the voices are electronic, they do lack 'naturalness' and do not have the subtle individual variations in voice quality, tone, volume and regional accent that physiological voices have. Thus, with the present level of technology they still have a 'robotic' quality, which attracts unwanted attention and is not unique to the person in the way that a natural voice is.
The way in which the user 'accesses' the letters, words or phrases on the VOCA depends on each individual's physical skills. 'Direct access' refers to systems where the person chooses buttons or squares on a screen directly with their finger (or a headpointer or foot). The majority of the participants in this study used this method. The size and bulkiness of the VOCAs varies. Smaller ones can be moved around and used on a table, on the person's lap, or even hanging around their neck or held while walking. Most, however, are bigger and are usually mounted on a tray or bar attached to the person's wheelchair. This obviously restricts the range of contexts in which it can be used. For example, if the user is sitting in another chair, lying in bed or on the floor, or of course doing sport or another activity out of their wheelchair such as swimming, their VOCA, and therefore their 'voice,' will be unavailable to them.
For most, the high-tech system is very slow compared to natural speech or most of the low-tech modes. Many AAC users, of necessity, use rather short utterances. Some go to great lengths to make these grammatically accurate, whereas others develop their own forms of ellipsis, using idiosyncratic shorthands, or sometimes just key words, relying on a mediator who knows them well to co-construct the full sentence for them. They may use pre-programmed phrases, which roughly suit the purpose, but may be rather inexact. The result is that although English is being spoken, it is almost a different dialect, or perhaps a 'creole' with its own very particular rules, logic and idioms, generated in a particular context. It can therefore be difficult for a newcomer to understand this. These shortcuts, which can be highly colloquial and individual, become part of the person's 'voice,' identity and characteristic of them as a person.
Links between thought and language have long been debated and are complex (Geertz 1993, Csordas 1994, Goffman 1959). However there is often confusion between language (as the internal process) and speech (the external physical expression), such that someone who does not speak may be assumed not to have anything to say, and thus not to be thinking either. Thus, using AAC has important implications on the identity of the person. The theoretical approach to identity drawn on here is that of Jenkins (2004), which suggests that there are broadly two complementary aspects of identity: selfhood (how you see yourself) and personhood (how others see you). These are constantly evolving, influencing each other and intertwining across contexts and during an individual's lifespan.
For people using natural physiological speech, talking is an important way of negotiating and establishing identity, as what we say is assumed to represent what we think. This has been recognized by authors who link the role of narrative to identity formation (Connelly and Clandinin 1990, Cohen 1994, Thomas 1999). Through conversation and narrating events in our lives we express who we think we are and how we would like others to see us (Ochs and Capps 2001). Thus, for AAC users whose communication systems are slow, this opportunity may be denied, unless their conversational partners adapt very specifically and expertly to the type of communication being used.
Identity is usually expressed not only through the unique content of individuals' talk, but also through aspects of style as expressed by voice quality, intonation, choice of vocabulary and grammar etc and this is context dependent (Collins and Markova 1999). Different people might be very characteristically verbose, taciturn, grammatical or slangy, but will also vary their style according to the social situations. Verbal language is also accompanied by each person's unique nonverbal communication. Potentially then, an AAC user may be denied these means of expressing their individuality, especially if as is usual, they have severe physical impairments which restrict their movements or when they are under extreme time pressure.
However, it is often overlooked that despite not having the individuality of a physiological voice, AAC users can and do express their identities through their unique way of using their AAC modes. Clearly then, AAC users do choose to adopt a range of different styles of talking to suit varying contexts, and such choices can be said to reflect aspects of identity. Familiar conversational partners, for example, are expected to be very skilled at recognizing shifts of mode (e.g. use of eye gaze or a sign in the middle of a VOCA utterance), and at interpreting even the less clear messages through processes of using prior knowledge, contextually appropriate guessing, and mediation. AAC users' ability to adapt their style and content may be limited for purely practical reasons, as an artifact of both their impairments and the technical capacities of their communication systems, but they are actually very skilled at finding verbal and nonverbal ways of expressing their individuality. Manufacturers are beginning to take notice of AAC users' desire for variation in the voice qualities on VOCAs and develop the technology to achieve this.
This overview has emphasised the central role normally attributed to language as expressed through voice, as a reflection of thought and of the person, and the way that in telling stories about their lives people bring their self-identities into being. Underlying this is the notion that agency is usually demonstrated through talk, so differences in ways of talking may bring about fundamental differences in others' perceptions about the person. As Katie (adult research advisor and AAC user) put it: 'It is tempting to think that less talk means fewer ideas!'
Both the relationship between the teenage AAC users and their VOCAs, and how they conceptualise these, were core aspects of the present study. Several participants made it quite clear that they do not want their 'machine' to be seen as more important than the person using it: "When people say 'oh what a fantastic machine', I am blunt in my reply 'the machine is boring, I am fantastic'. I do not care what people think of me for making that remark. The identity behind the machine is what is important" (Allan 2006:11).
This echoes much of the previous literature about disability and identity in emphasising the social-relational aspects of the person, rather than foregrounding their impairment or disabled status (Shakespeare 1996, Watson 2002, Thomas 2004).
Allan (2006), quoted above, who was an adult advisor on this project describes the way in which her electronic voice, produced by her VOCA is 'her voice'. Others may view this electronic voice as odd and artificial, but for her it is part of her. Here then is a potential site for interesting issues in selfhood and personhood, when people have 'non-natural' bits of their bodies. With the development of new technologies the boundaries between nature and culture are no longer secure, and as Sharp suggests: 'Constructions of the human body and of human nature itself emerge as deeply troubled' (2000:295).
The ways in which people who use AAC manage their own identity formation, and the ways in which others see their different bodies is thus a matter of interest and conjecture in fast changing times of technological advancement (Cromby and Standen 1999).
Used philosophically or anthropologically, the 'voice' is the expression of both internal and external dialogues, a representation of the person. Thus, the ways in which a person talks and moves (i.e. the latter as part of nonverbal communication) are like a 'fingerprint' of selfhood, simultaneously unconscious and conscious. This is usefully reflected in Habermas' (1984) recognition of the role of communication in intersubjectivity and Bourdieu's (1977) inclusion of it as a part of habitus.
Social communication, and particularly talk which is declarative rather than imperative, is also fundamental to the formation of social relationships (Nelson 2000, Connelly & Clandinin 1990), and especially in adolescence (James 1986, Bohanek et al 2008). Although at first glance physical production of a voice may not seem significant in relation to personhood, in a vocal culture it is important to be seen as someone who can produce words somehow, and therefore meanings. Voice, as a vehicle for language, can both generate and reflect power relations (Ng & Bradoc 1993), and thus, someone without a natural voice or someone possessing a different kind of voice may easily be disadvantaged (Forster and Caryer 1997). The way that such voices are perceived and represented by others is also of great importance. This is what this study set out to explore.
Overview of the main study
Research aims and questions
The study aimed to explore identity and the lifeworlds of teenagers who use AAC. The research questions were:
- How do young people with severe physical and communication impairments who use AAC see themselves (selfhood)?
- How are young people who use AAC seen by others (personhood)?
- What kinds of social relationships do young people who use AAC have?
- What role does the body play in the development of selfhood, social relationships and personhood for young people who use AAC?
- What kinds of methodologies work best when doing research with young people with severe communication impairments?
Participants were 9 key young people aged 10-16 years (6 girls, 3 boys). Additional data was obtained from a further 15 teenagers aged 14-19, and from 3 adult research advisors, all with similar impairments and all AAC users. Parents, school and extra-curricular club staff also contributed. The AAC users had severe physical impairments caused by cerebral palsy. Broadly, they had typically developing cognitive skills and little or no natural speech. All used a power wheelchair and a high-tech voice output communication aid (VOCA), as well as a range of low-tech communication methods. Notably, all either currently or previously used 'communication books', either as their preferred method or when their VOCA was unavailable.
All needed physical help with daily activities such as dressing, toileting, and feeding. The teenagers attended a variety of special or mainstream schools, and had the support of many professional 'helpers' such as classroom and personal assistants and therapists. They lived with their biological families, although 4 attended residential schools.
University ethical clearance for the study was obtained. Parents gave initial written consent, however verbal consent from the teenagers themselves was also given prominence, and was ongoing, being reviewed and renewed verbally at key points during the study.
The main research method was participant observation, which took place over an eighteen-month period in the teenagers' homes, schools and extra-curricular clubs. Additionally, a series of 'extended narrative conversations' on focused topics were held with the 9 key participants. Topics included: my important people, self-description, things I love and hate, dreams for the future, friends, people who help me, my body, my communication. These conversations were supported by the researcher drawing mind maps using written words and pictures, so that the content could be reviewed, subsequently edited later in the process, and, finally, kept by the participants.
Interviews with parents and focus group discussions with school staff were also held. These contextualized the young people's data, but the aim was always to keep the young participants' perspectives and voices at the fore, as these are so often overlooked and not valued. The data then comprised ethnographic observations, field notes and transcriptions of digitally recorded conversations. All data was entered into NVivo (V7) (QSR 2006) and coded. Themes emerged iteratively and were revisited and reviewed in a constant comparison process, which started during the latter stages of the fieldwork. The initial thematic analysis of the data was presented back to the teenagers and some parents towards the end of the study. It was also discussed in depth with the 3 adult AAC users in order to get ongoing participant validation of my analysis and interpretations.
Overview of the main findings
The 5 main themes that emerged were given user-friendly names when they were presented to the teenagers for comments, and so these names have been used subsequently:
- Whose voice is that?
(communication issues as they relate to identity)
- Being a family person and being a teenager
- Me myself I
(selfhood 2, autonomous and disabled selves)
- Bodies and kit: how I see my body and my equipment.
(the body, physical aspects of identity and the role of the kit)
- My family and others: how other people see me
In summary, the results show that teenage AAC users are much more interested in the ways that they are the same as their peers, than in the ways they are different. They describe themselves variously, for instance: 'fun, clever, a laugh, beautiful, caring, helpful, thoughtful, sporty, strong, and a fighter', as well as 'singleminded, messy, stubborn, late, scruffy, and cheeky' (grouped data). They are interested in typical 'teenage' topics such as IT, music and media, fashion, sport, food, holidays and trips, going out, sexuality, group gossip and increasingly in doing things without adults.
The participants view themselves principally as 'normal teenagers,' whose families and friends are very important and influential in their lives. They and their parents used the term 'normal' quite insistently and with no hint that this in itself might be tyrannical. The normality they all highlight is social-relational, as they paint positive pictures of themselves as sociable and competent without highlighting their impairments, although they acknowledge these as part of their disabled identity. Some see their physical and communication impairments as ways in which they are 'interestingly different.' Their aspirations for life are like those of their non-disabled peers and siblings, and these are their role models. They are pragmatic about the effects of their impairments, and have expectations that these are surmountable and should not stop them from doing 'normal' things. Like previous research about disabled people and identity, they thus emphasize their social-relational selves (Thomas 2004). They want to be more socially included outside their families and to be treated age appropriately. Their main concerns were to have more friends, appropriate and reliable technology, and friendly, respectful personal assistance that would enable them to have as much autonomy as possible. They emphasise that everyone should be treated as a person who has something interesting to say.
Conclusions of the main study
The conclusions of the study were that despite the teenagers' positive and normative views of themselves, they were seen very differently by others, especially those outside their families. There was an ontological dissonance between their selfhood and personhood, which explains their frequent feeling that they were being misunderstood and that their disabled status was given too much attention. They were keen for their complete selves as socially competent and family oriented, but outward looking teenagers to be recognized.
Teenagers' views of their communication
During the eighteen months of fieldwork the participants' views and feelings about their communication arose intermittently in many different contexts. In addition, we discussed this issue specifically during the focused narrative conversations.
The teenagers had mixed and ambivalent views about using AAC and particularly about their VOCAs:
Bryony I love my voca and I hate my voca
Prakash ITS FANTASTIC…. BUT I HATE IT WHEN IT BREAKS DOWN
Jemma MY VOCA WORKS HARD FOR ME
Kate Its like a clever cool computer
Toby TOO SLOW
All saw their high tech AAC device as useful in some contexts because it enabled them to talk to strangers, to express their feelings and needs, and particularly, to have an audible voice with less need for someone to mediate for them— something the low-tech modes nearly always need.
Kate NOW THAT I'VE GOT MY VOCA (AND CAN SPELL) I CAN BE INDEPENDENT, I CAN GO SHOPPING ON MY OWN. I CAN ORDER FOOD AND DRINK IF I GO OUT. IF I'M ILL, I CAN TELL THE DOCTOR WHAT IS WRONG WITH ME.
However, nearly all of them chose to use their low-tech systems with family and close friends because these are quicker. And the participants emphasised using a variety of methods:
MW How would say you communicate with other people? What are the ways you do it?
Terry USE VOCA
MW okay… anything else?
Terry E-MAIL, COMPUTER
MW okay great!
Terry MY EYES… HANDS
As part of the research, I helped the organization 1Voice make a dvd with a group of teenage AAC users (1Voice 2009). Notably they chose to use the phrase 'MY VOICE IS MY POWER' repeatedly as a kind of rap to illustrate the importance for them of having an audible voice.
Issues around ownership and control of their communication systems arose often. The participants expressed awareness of their sometimes limited control over their own vocabulary. Specifically, they were reliant on others such as parents, speech and language therapists (SLTs) or teachers to add new items to their communication books or programme words or phrases into their VOCAs. The young people saw the importance of using 'teenage language like innit' as Jemma called it, because: "THAT'S WHAT TEENAGERS USE AND I AM ONE."
I witnessed a discussion between two of the boys (aged 14) and their SLT about having swear words and football slogans available on their VOCAs. Their pragmatic view was that using AAC, per se, was less of an issue than how they used it and what they could say. If they were not allowed and facilitated by adults to say what they wanted to, this was seen as an affront to their growing need for autonomy and their teenage identities.
Just like other young people who enjoy chatting, the teenagers here often underlined their desire to do this like their peers.
Nathalie TALK TO ME LIKE A TEENAGE GIRL
Jemma I like chatting about boys in the corridor!
Josie I like having a moan! (Etran frame)
Marie (I want to) talk better, talk to my friends (symbol book & signs)
They underemphasized the differences that are signaled by using AAC and instead highlighted their desire to be included in peer groups' conversations and to be 'in on the gossip.' Although they did not deny their need for aided or mediated communication, or their disabled status, they did not see this as the most important part of them.
Nathalie I want to go on the school bus so I'm in conversations
The importance of having a voice is expressed clearly by Nadia Clarke (15) in this poem, which she wrote to underline the importance of her VOCA to her:
WITH AND WITHOUT
WITHOUT A VOICE I FEEL LONELY
WITH A VOICE I CAN MAKE FRIENDS
WITHOUT A VOICE I AM VULNERABLE
WITH A VOICE I AM SAFE
WITHOUT A VOICE I HAVE NO LIFE NOW OR IN THE FUTURE
WITH A VOICE I CAN ENJOY AND ACHIEVE
WITHOUT A VOICE I AM EXCLUDED
WITH A VOICE I CAN BE INCLUDED IN MY COMMUNITY
WITHOUT A VOICE PEOPLE THINK I AM STUPID
WITH A VOICE I CAN GO TO SCHOOL AND LEARN
WITHOUT A VOICE I WOULD BE SO BORED AND FRUSTRATED
WITH A VOICE I FEEL GOOD ABOUT WHO I AM
As I came to know the participants well, I noticed the subtle differences in their communication use and styles. For instance Ted (12) and Terry (14) contrasted greatly with each other despite having broadly similar impairments. Terry used lots of nonverbal communication, but was very elliptical in his use of his VOCA and expected his conversational partners to be creative in co-constructing and elaborating his very short utterances. In contrast, Ted had very little physical movement available and so communicated less nonverbally, but was very precise and took time to use grammatically complete sentences with his VOCA. Although these differences were partly dictated by their levels of impairment, I came to see them also as aspects of the boys' unique identities. Several teenagers said that they would like to be able to use intonation and have more choices of voices and regional accents on their VOCAs and more recognition of their various ways of communicating. I understood this also to be a desire for more opportunities to express their identities through their voices.
The extent to which individual participants would persevere with conversations when this was difficult varied noticeably. Often this appeared to be related to the skills and attitudes of the conversation partner as well as those of the AAC user. Marie (13) explained to me in a long and elaborate multimodal conversation (using signs, symbols, speech and VOCA) that she could judge between 'goodies and baddies'. The former were people who took the time to understand her, the latter were those who were impatient, patronising or assumed she had nothing to say. In contrast Josie (15) who described herself as 'chatty', told me that she liked to persevere and "always get my message across somehow (etran frame)."
Some teenagers disliked the social effect of having an unusual voice, saying the VOCA drew too much attention when they were out in public. Others were proud of using it, as it made people realise they were clever. Several mentioned that they were sometimes left out and had to accept often not saying what they wanted to. They were often cast in the role of an observer, whereas they wanted to be more actively 'one of the gang.' One of the older boys, George (17), reflected that he had fewer opportunities for deep conversations than other people and was often on the sidelines.
The participants were very aware that both their use of a wheelchair and of AAC could affect people's views of them and what sort of person they could be. They emphasised the need for recognition that who you are is more important than what you can do, and some struggled with knowing how to show people who they were, when in a verbal society, first impressions are often formed on the basis of what we say.
I witnessed numerous occasions when the teenagers were perhaps unintentionally, but effectively, excluded from conversations. Sometimes they did not have their VOCAs available because of pure practicalities. This might be when driving their wheelchair, doing sports, or when the VOCA battery was flat, and sometimes their communication book was also unavailable. As Jemma put it, when her VOCA was out of action: "I want my voice back."
They were also clear about the need for particular types of behaviour from others in order to support their inclusion in conversation. As a group, they gave me a list of advice for people talking to them, including:
- GIVE ME TIME TO GET MY MESSAGE READY
- BE PATIENT
- LISTEN TO ME
- TREAT ME AS SOMEONE WHO HAS THINGS TO SAY
- DON'T LOOK OVER MY SHOULDER AT MY SCREEN
- DON'T LOOK BORED
- CHECK THAT YOU HAVE UNDERSTOOD ME RIGHT
- DON'T BE SCARED OF ME, MY BRAIN WORKS FINE
- ASK ME BEFORE YOU TRY TO GUESS WHAT I AM SAYING
Processes of co-construction — negotiation and collaboration
As the fieldwork progressed and I become increasingly familiar with each individual's complex and unique communication style, I reflected on the role of conversational partners as they interact with AAC users. As an anthropologist, I saw my gradual familiarization with the language and culture of AAC as similar to the classic ethnographic experience of exploring a foreign land. I moved from being a complete outsider who often needed an interpreter to help me, to an insider position, where I sometimes found myself translating what the teenagers were saying for other relative newcomers. I saw that each individual had a spectrum of conversation partners who varied in their level of skill at facilitating conversations with them. By seeing the young people in a wide range of contexts, I saw how variably successful their interactions with others could be.
With family, close friends and those working regularly with them, they were able to have fast, subtle, multimodal conversations. This was possible because these familiar people were expert mediators, who were used to interpreting the meanings of facial expressions, eye gaze, and body movements in concert with output from low- and high-tech aids. Nearly every 'utterance' needs verbalising out loud by the conversational partner to check that it has been correctly understood, and although this sounds cumbersome, it is achieved with speed and fluidity that does not disrupt the flow of conversation. In contrast, conversations with strangers or the uninitiated are much slower, more jerky and full of misunderstandings, repetitions and often some frustration on both sides.
My own skills in becoming a more skilled conversation partner were revealed in the data over time. Upon reviewing audio-recordings of earlier conversations, I saw where I had misunderstood rather telegraphic messages, and had failed to understand individuals' shortcuts or nonverbal messages. This led me to consider the skills and tasks required by both partners when one person is using AAC. These are summarized in Table 1. Some similar observations have been made by other researchers looking at the process of AAC interaction, but using different (mainly psychological or linguistic) theoretical frameworks and methodologies (Pennington and McConachie 1999, Clarke et al 2002, Clarke and Kirton 2003, Light and Binger 2003)
Some participants seemed resigned to being misconstrued, and there were various examples during the fieldwork when, in retrospect, I discovered something which revealed that I had misunderstood a previous conversation, although the young person had kept quiet about this. While some clinical researchers have described this kind of behaviour as 'passive' (Pennington & McConnachie1999), it can be reconceptualised as agentic and pragmatic. The teenagers learn to make judgments about what is worth the effort and really important to say and when to let a misunderstanding go.
|AAC users' tasks/skills||Conversation partners' tasks/skills|
|Possible challenges and risks for AAC users||Possible challenges and risks for conversational partners|
Of course, all conversation and interaction is reciprocal and has an element of interpretation and clarification between the partners involved. However, the possibilities for misunderstanding and for misconstruction of the message are amplified greatly when one person uses AAC. We can see that in co-constructed conversations there is risk that the AAC message may be constructed by the conversational partner in a way that is perhaps close enough to the intended meaning for the AAC user to decide not to correct it. However, the cumulative effect of these frequent 'miss hits' might be that a quite inaccurate set of narratives about the person starts to be perpetuated. Thus, the AAC user's identity may be more actively externally constructed than is usual. Natural speakers can easily correct and retell stories in their own way, so that they have more control and authorship of their own identity construction. Some fundamental aspects of the AAC user's identity may be misconstrued because of the challenges of communication.
Authorship and representation of the research data
There are recognised issues about authorship and representation in the production of written ethnographic texts generated from the field (Clifford and Marcus 1986, Wallman 1997). However, these are even more complex in research with AAC users where a verbatim transcription from audio recordings will often only provide the conversation partners' voices (if low-tech modes are used), or a complicated series of electronic clicks, spoken letters, and individual words, before the final phrase is built, with VOCA use. Nonverbal communications such as eye gaze and signing are also problematic to document. For disabled people with few words at their disposal or who use very slow modes of communication, the danger of "putting words into their mouths" is very great (Brewster 2004). Issues around authenticity and accurate representation are of a very real and ethical nature in this kind of study. AAC users themselves have expressed anxiety about research methods that use 'data' from their VOCAs in ways which they haven't approved (Herd and Caryer 2006).
I realised early in the fieldwork that there is a conflict between accurately and laboriously transcribing every aspect of the AAC users' 'output,' which would preserve authenticity, versus editing and reworking the messages for clarity. I sensed that verbatim transcription had more force and gave more sense of a person's individual communication style, and therefore their unique identity, whereas a more 'interpreted' style would be more accessible to readers. With the latter approach the message is maintained, but the minutiae of the process of producing it is lost.
After some reflection, I chose mainly to use the latter method, but with the proviso that I should carry out as much 'respondent validation' of the messages as possible, in order to avoid misrepresentation (Couser 2005). I spent considerable time checking with the teenagers that I had understood what they had said and that they were happy with my rephrasing or addition of conventional grammar. This was done during our regular conversations, and also during revisiting of data near the end of the fieldwork. Although I was worried that they would find this boring, they were in fact amused and interested in hearing what they had said before. They were not afraid to tweak my representations for accuracy and nuance. I was very aware that my representation of their voices could either reinforce negative and pathologising stereotypes about them, or conversely serve to humanize them and provide real insight into their lifeworlds and the processes by which their identities are in construction (Davis and Watson 2002).
Recent developments in both low- and high-tech AAC modes allow many possibilities for communication that were previously not available to people with little or no speech. However, these are not a panacea for the difficulty of not being able to talk quickly and easily. Even with excellent technology, and skilled, subtle usage by the AAC user and their conversation partners, there are complex consequences for the social interactions and identity of those with unusual voices. One positive development is that the most recent technological advances in 'mainstream' computer based technology, such as iPads, text to speech systems etc are beginning to cross over into use for disabled people. This will make the use of technology for communication a more commonplace occurrence. AAC users may experience less unwanted attention, and the attribution of personhoods that are closer to their own images of themselves. The greater the variety of ways in which those without speech can express their inner language, the more they will be included and recognised as people with voices that should be heard. As Bourdieu says: "Language is not only an instrument of communication or even of knowledge, but also an instrument of power" (1977: 648).
Voice is then both 'natural' and 'cultural.' When someone does not have a 'physical voice' of their own that would demonstrate that they have language internally, they have to find other routes to express identity and find 'a voice.' The development of high-tech VOCAs may be revolutionary in expanding the range of narratives and themes that those with little or no speech can express and, more importantly, are recognised as having. Being able to tell one's own story is an important part of selfhood and is potentially empowering. The responsibility of communication partners and researchers is to represent what AAC users say as authentically as possible.
- Allan, M. (2006). AAC and Self-Identity. Communication Matters. Vol 20 (3): 9-12.
- Aull Davies, C. (1998). Reflexive Ethnography: A guide to researching selves and others. London. Routledge.
- Bohanek, J.G., Marin, K.A. & Fivush, R. (2008). Family Narratives, Self, and Gender in Early Adolescence. Journal of Early Adolescence. Vol 28(1):153-176.
- Bourdieu, P. (1977). Outline of a Theory of Practice. Cambridge. CUP.
- Brewster, S. J. (2004). Putting words into their mouths? Interviewing people with learning disabilities and little/no speech. British Journal of Learning Disabilities. Vol 32: 166-69.
- Clarke, M. T. McConachie, H. R. Price, K. & Wood, P. (2001). Views of young people using augmentative and alternative communication systems. International Journal of Language & Communication Disorders. Vol 36: 107-115.
- Clarke, M. & Kirton, A. (2003). Patterns of interaction between children with physical disabilities using augmentative and alternative communication systems and their peers. Child Language Teaching and Therapy June 2003 19: 135-151.
- Clifford, J. & Marcus, G.E. (1986) Writing culture: The Poetics and Politics of Ethnography. Berkeley. University of California Press.
- Collins, S. & Markova, I. (1999). Interaction between impaired and unimpaired speakers: Inter-subjectivity and the interplay of culturally shared knowledge and situation specific knowledge. British Journal of Social Psychology. Vol 38: 339-368.
- Cohen, A.P. (1994). Self-Consciousness: An alternative anthropology of identity. London. Routledge.
- Couser, G.T. (2005). Paradigms' Cost: Representing Vulnerable Subjects. Literature & Medicine. Vol 24(1): 19-30.
- Cromby, J. & Standen, P. (1999). Cyborgs and Stigma; Technology, Disability, Subjectivity. In Gordo-Lopez ,A. & Parker, I .(Eds) Cyberpsychology. London. Routledge. Chap 6: 95-112.
- Csordas, T.(Ed). (1994). Embodiment and Experience: the existential ground of culture and self. Cambridge. CUP.
- Davis, J. & Watson, N. (2002). Countering Stereotypes of Disability: Disabled Children and Resistance. In Corker M & Shakespeare T (Eds) Disability/postmodernity: embodying disability theory. London. Continuum International Publishing Group. Chap 12:159-175.
- Fry, D.B. (1977). Homo Loquens: Man as a talking animal. Cambridge. CUP
- Forster, C. & Caryer, K. (1997). Do Utterances from a VOCA Receive the Same Respect as Spoken Language? Communication Matters. Vol. 21 (3).
- Goffman, E. (1959). The presentation of self in everyday life. London. Penguin.
- Goffman, E. (1963). Stigma: Notes on the management of spoiled identity. London. Penguin.
- Hammersley, M. & Atkinson, P. (1995). Ethnography: principles in practice. London. Routledge.
- Herd, J. & Caryer, K. (2006) Free speech or censorship? The experiences of AAC users. ISAAC. 12th Biennial Conference. Dusseldorf. ISAAC.
- James, A. (1986). Learning to Belong: The boundaries of adolescence in A.P. Cohen. (Ed). Symbolising Boundaries: Identity and Diversity in British Cultures. Manchester.. Manchester University Press.
- James, A. (1995). On being a child: the self, the category and the group In Cohen, A.P. and Rapport, N. (Eds). Questions of Consciousness. London. Routledge. Chap 3: 60-76.
- James, A. (2007). Giving Voice to Children's Voices: Practices and Problems, Pitfalls and Potentials. American Anthropologist. Vol 109(2): 261-272.
- Jenkins, R. (2004). Social Identity. London. Routledge.
- Light JC & Binger C (2003) Communicative competence for individuals who use AAC: from research to effective practice. Baltimore. Brookes Pub Co
- Mackenzie, C. Leach Scully. J, (2007). Moral Imagination, Disability and Embodiment. Journal of Applied Philosophy. Vol. 24(4):335-351.
- Morris, J. (2003) Including all children: finding out about the experiences of children with communication and/or cognitive impairments. Children & Society. Vol 17 (5): 337-48.
- Ochs, E. & Capps, L. (2001) Living Narrative: creating lives in everyday storytelling. London. Harvard University Press.
- 1voice. (2009). 1Voice DVD: Listen to me. http://www.youtube.com/watch?v=vLf7RCWKhrU
- Paterson, K. Hughes, B. (1999). Disability Studies and Phenomenology: the carnal politics of everyday life. Disability & Society. Vol 14(5): 597-610.
- Percy —Smith, B. & Thomas, N. (2009) A handbook of children and young people's participation: perspectives from theory and practice. London: Routledge.
- Pennington, L. & McConnachie, H. (1999). Mother-child interaction revisited: communication with non-speaking physically disabled children. Int Journal of Language & communication disorder. Vol 34(4): 391-416.
- QSR (2006) NVivo Version 7.0. QSR International Pty. Ltd
- Rabiee, P. Sloper, P. & Beresford, B. (2005). Doing research with Children and Young People who do not use speech for communication. Children & Society. Vol 19: 385-396.
- Shakespeare, T. (1996). Disability, Identity and Difference. In Barnes, C. & Mercer, G. (Eds). Exploring the Divide. Leeds. The Disability Press.
- Smith, M. (2005). The dual challenges of aided communication and adolescence. Augmentative & Alternative Communication. Vol 21(1): 67-79.
- Thomas, N. & O'Kane, C. (1998). The ethics of participatory research with children. Children & Society. 12: 336-348.
- Thomas, C. (1999). Narrative identity and the disabled self In Corker, M. & French, S. (Eds). Disability Discourse. Buckingham OUP.
- Thomas, C. (2004). Developing the social relational in the social model of disability; a theoretical agenda. In Barnes, C. & Mercer, G. (Eds). Implementing the Social Model of Disability; Theory and research. Leeds. The Disability Press.
- Wallman, S. (1997). Appropriate anthropology and the risky inspiration of 'Capability' Brown: Representation of What, by Whom and to What End. In James, A. Hockey, J. & Dawson, A. (Eds). After Writing Culture: Epistemology and Praxis In Contemporary Anthropology. London. Routledge. Chap15: 244-264.
- Watson, N. (2002). Well I know this is Going to Sound Very Strange to You but I Don't see Myself as a Disabled Person: identity and disability. Disability and Society. Vol 17(5): 509-527.
- Wickenden, M. (2009). Talking to Teenagers: Using Anthropological Methods to Explore Identity and the Lifeworlds of Disabled Young People Who Use AAC. Communication Disorders Quarterly. XX(X) 1-13.
- Wickenden, M. (2011a) Listen to us too! A booklet. Important messages from a study about the lives of disabled teenagers who use Alternative and Augmentative Communication. University College London. http://www.ucl.ac.uk/cihd/library/Listen.
- Wickenden, M. (2011b). 'Talk to me as a teenager': Experiences of friendship for disabled teenagers who have little or no speech. Childhoods Today Vol 5 (1) July. http://www.childhoodstoday.org/journal.php
Systems of communication which are used in addition to or instead of natural speech. The different methods are called 'modes' and may be low tech, such as signing, gestures, or pictures symbols or letters arranged on a board or book, or high tech devices operated by switches which produced an electronic voice (voca). Most AAC users use a combination of these methods, depending on their skills, the context and the skills of the conversational partner.
Return to Text
Typically about 10-20 words per minute, compared with 100-150 words per minute for natural speech.
Return to Text
The notation convention used here is that all verbatim utterances are marked in italics. Those said on a VOCA are in UPPER CASE. Those said with natural speech are in lower case, and those using other low tech modes are indicated as such in brackets
Return to Text
1Voice Communicating Together is a national networking organization in the UK which supports families who have a child who uses AAC
Return to Text