1 BREAKING THE SILENCE INSTITUTIONAL RESPONSES TO PEOPLE WHO USE ATYPICAL COMMUNICATION STRATEGIES 2 Acknowledgements 3 Prologue A journey of a thousand miles starts with one step. The step which led me to research society’s responses to people who use atypical communication strategies occurred in 1965. I was an undergraduate and had a holiday job as a teaching assistant at a day centre for people with cerebral palsy. Each Friday morning it was my job to take one of the students to the nearby shops to purchase ingredients for the lunch we would cook together. On this particular day I was wheeling Brett, a teenager with spastic quadriplegia and no speech. Brett had all the paraphernalia of severe disability—callipers, straps, a tacky sheepskin and a bib. As I was wheeling him down the street a middle-aged woman with blue hair and white gloves stopped me. "You must have done something dreadful to have a child like that", she said. The cruelty and stupidity of the remark are obvious, as are some of the other assumptions on which the woman was operating. She assumed that I must be Brett's mother because no-one other than a mother would be seen with such a child. She also assumed that Brett was unaware and uncomprehending. Brett understood everything she said. No-one who knew Brett could doubt his lively intelligence or overlook his wicked sense of humour. Sadly, Brett died before the advent of the communication techniques and technologies which have liberated the language locked inside many others like him since the sixties. That walk with Brett brought home to me for the first time the burden of prejudice under which people with severe disabilities and their families labour. It also made Brett's disempowerment patent. Without a voice he could not respond. Without a voice he was at risk of being viewed as object, not person. That walk started an engagement with people without speech which has led me to write this thesis some three decades later. It would be false to pretend that this thesis is solely the product of disinterested research. It is the product of research viewed in the light of my own experiences since that walk with Brett. During this thirty years my life has become increasingly intertwined with the lives of non-speakers. While I have not experienced life without speech, I have taught and lived with people without speech. The experiences which I have shared with people who cannot talk give me a different perspective from that of a less engaged researcher. I believe that it adds to, rather than subtracts from, the validity of my results. As Harlan Lane contends: 4 Even if we could write history as documentation, we should not. If the historian’s subject turns on sustained outrages against fundamental human values, as mine does, is he to deny his humanity and pretend indifference? (Lane, 1984: xv) My journey parallels that of the development of non-speech communication. At this time only someone who has made such a journey can hope to investigate this topic fully because the texts are not yet there. They are being created now, by people without speech and their fellow travellers, in whose minds and diaries the recollections of the growing years of non-speech communication are stored. 5 Section 1. Placing communication impairment in context According to German philosopher Jurgen Habermas there is a universe of meaning that is ... hermetically sealed to the view of observers incapable of communicating.... The life world is open only to subjects who make use of their competence to speak and act. They gain access to it by participating, at least virtually, in the communications of members and thus becoming at least potential members themselves. (Habermas 1984:112) More simply, Anne McDonald wrote that to have a severe communication impairment is to risk being placed “totally outside the boundaries which delineate the human race.” (Crossley & McDonald, 1980: vii) This study explores those boundaries. It covers the period since the formalisation of sign language communication for the deaf in the late eighteenth century and compares the introduction and expansion of non-speech communication for people with receptive impairments with the introduction and expansion of non- speech communication for people with expressive impairments. It examines societal responses to the use of non-speech communication strategies by people with varying communication impairments, in particular the reactions of administrative systems and professional establishments to the introduction of new communication techniques. While it focuses on Australia it also contains material from other western countries. Currently people with severe communication impairments are seen as belonging in one of three broad categories: sensorily impaired, physically impaired or intellectually impaired. This study documents the changes in status which have occurred for members of each category as the nature of their communication problems has been recognised, alternative communication strategies have become available, and members of the group have become their own advocates. It also assesses how well each group has succeeded in attaining full participating membership of the wider society. Hypothetically, establishment of effective communication and provision of appropriate educational options should result in recognition of learning capacity, with citizenship rights, inclusion and acceptance following. This thesis examines both the past and current societal status of different groups of individuals with communication impairments, primarily from English-speaking countries, in terms of their progress through this sequence. It attempts to document the changes in status which have 6 occurred for each group, and to explore the dimensions of power in the communication between people with severe communication impairments and social institutions and professional structures. The primary hypothesis guiding this thesis is that repeating patterns will appear, both in attempts to change the status of different groups and in professional intervention and reaction. The secondary hypothesis is that the group recognised longest—the deaf—will have come closest to achieving acceptance, and that today children who are deaf are more likely to progress through a sequence of diagnosis and intervention leading to acceptance than children whose communication impairments are not due to deafness. 7 Chapter 1. Setting the scene Few of us will ever do anything more complex than learn to speak the language which surrounds us in infancy. Virtually every baby has grasped the basics of its surrounding language by the age of one. The child speaks very little, if at all— developing fine motor control takes time and practice—but it has established the foundation of understanding which will lead to mastery of spoken language within the next few years. Nobody teaches a baby to speak. Nobody teaches a baby to understand. The baby learns to associate the peculiar sounds that the humans around it make with the people, the objects and the happenings in its environment (Pinker, 1994: 266). By the age of two or so children without communication impairments know that the world "is open only to subjects who make use of their competence to speak and act." (Habermas, 1984: 111) They proceed to do a lot of work refining their pronunciation and extending their vocabularies and their command of syntax. They learn many social conventions about greetings and farewells and please and thank you and what words get you into trouble and when to whisper, and by the time they start elementary school they are really amazingly good communicators (Pinker, 1994: 269- 273). Five-year-olds may have speaking vocabularies of 5,000 words and understand many more than they say; estimates of adult vocabularies vary widely from speaker to speaker and researcher to researcher, ranging from 10,000 words to 50,000 plus (Pinker, 1994: 150). This thesis is about the one person in two hundred who cannot say those words (Borthwick, 1994: 34). This chapter briefly describes the impairments which prevent people speaking and introduces the main groupings of people with communication impairments and the communication strategies their members use1. There are two main classes of communication impairments: receptive and expressive. Hearing or speech impairments can either be present from birth or acquired later in life. A developmental communication impairment affects a child’s learning and socialisation. An acquired communication impairment alters the interaction of an individual with his/her social group or groups. The acquisition of language is a complex process, and there are many points at which it can break down. Babies who cannot hear do not develop language without 1 Some of the material in this chapter has been published in Speechless (Crossley, 1997). 8 special intervention unless they are born into a signing household (in which case they acquire visual, signed language naturally, in the same way as a hearing child in a speaking household acquires auditory, spoken language). Called pre-lingually deaf, they are at great risk of linguistic, social and educational deprivation if their impairment is not diagnosed and addressed early in life. Occasionally babies who can hear have something wrong with the neurological system involved in decoding speech, and are unable to attach meaning to the sounds they hear—they, too, may be left without language. Those who have difficulty storing information will be slow in acquiring vocabulary and syntax, and their comprehension and expression will be impaired relative to their age peers. Severe expressive impairments exist in isolation relatively rarely, and when they do are called Specific Language Disorders. More frequently they are associated with other diagnoses, commonly Cerebral Palsy, Autism, Down syndrome or intellectual impairment of unknown etiology. Whatever the cause, basically children who have difficulty accessing motor or verbal memory will have problems using spoken language and children who have neuro-motor problems affecting control of the muscles of the mouth and throat will find production of intelligible speech difficult or impossible.