Identity, Communication and Behaviour

Alan Challoner MA(Phil.) MChS

1993

INTRODUCTION
It is now well-established policy for the handicapped and learning impaired individual to remain in his/her community. Before long the doors will finally close on hospitals for the learning disabled. However it was, in part, the recognition that this was the way ahead, that brought about the climate of special needs provision. Unfortunately it has been the case that in attempting to provide the services that were expected to fulfil these 'special needs', the recipients have themselves been seen as special in such a way that they now seem to have lost the recognition that in many ways they are normal. No matter to what degree, or by what cause, a person is handicapped in the intellectual sense, that person still inherits certain characteristics that are consistent throughout the human race. If this fact is not recognized then society does them a disservice. I will deal with three of those characteristics: the development of a personal identity; a need to communicate; and closely bound with the way in which those two are permitted to develop, a pattern of behaviour. Where learning difficulties are present in the life of any individual, the nature of these characteristics tend to be perceived by others in the reverse order of that just stated. That is we notice unusual behaviour, we are then aware of difficulties in the receiving or in the giving of information, and lastly we are struck by the overall difference between the way in which the person actually is seen to be, and the 'societal norm' with which we have become familiar. As a consequence individuals are generally prioritized for attention in the same reverse order to what is most important to them. Thus if we concentrated firstly on identity; and secondly on communication; the third, behaviour, would be unlikely to draw attention as it would be unremarkable. You will have recognized of course that these differences can also be noticed amongst those whom we might expect to conform to societal norms. I mention this only to reinforce my earlier point that handicapped people are in most ways normal. It is important also to mention the obvious that, apart from physical or physiological abnormalities, the 'handicapped' person's body works in exactly the same way as anyone else's.

IDENTITY
The way in which identity develops has an importance for everyone, the learning disabled person included. Human growth stems from the conflicts, inner and outer, which the healthy Page 1 of 9

personality weathers. Amongst these there are several criteria according to which a healthy personality actively masters his environment, shows a certain unity of personality, and is able to perceive the world and himself correctly. In considering that all of these criteria are relative to a child's cognitive and social development, we may look upon childhood, by definition, as having an initial absence of such criteria, and of developing them in complex steps of increasing differentiation. This principle is derived from the growth of organisms in the womb. It states that the growth of living organisms follows a pattern or plan. As this plan proceeds and unfolds there arises individual parts which eventually will form the functioning whole. Each separate part of this development has a critical phase where there is a particular danger of defect. In addition to these, and following birth, the baby enters the system of his society and will proceed to develop his capacity to meet the opportunities of his culture. How well he succeeds in this will depend upon any genetic defect, or damage that was sustained before birth, or subsequent to birth; or to the effects of his environment and the nature of parental influences. There will be inner conflicts to be met and these idiosyncratic developments will determine how and in what manner the individual becomes a distinct personality. In all this development of identity there is a proper rate and a proper sequence, but nevertheless it does vary from culture to culture. The child who is met with understanding and respect and who is given appropriate guidance will follow instinctively these inner laws of development. These laws ensure a series of potentialities for significant interaction with those who will parent him and the society which responds to him. So we have the force from within and the interaction from without, and these two will allow for the development of personality over a period of time. This time may be contained mainly within the first seven years of life; or it may extend further in certain circumstances. What is worth considering is how these forces and interactions vary; not only in normal, healthy children but in those who are handicapped or who have a potential for becoming handicapped. There is here a paradox in which the child, having instinctive energy (the genetic endowment of developmental potential), is also vulnerable; and whilst this vulnerability is always present in some respects, the child is also completely oblivious and insensitive in others, and yet remains unbelievably persistent in the same respects in which he is vulnerable. If the child is to grow up normal, the family must reorient itself to accommodate his presence and they must grow together as a group. A family can bring up a baby only by being brought up by him. His growth consists of a series of challenges to them to serve his newly developing potentialities for social interaction. If however the baby's instinctive responsiveness is damaged in some way, or if his societal environment is deficient, then this situation has the possibility of creating a damaged personality, which in itself may be the basis of a handicap, or at least contribute to causing the handicap to be visible because the child becomes socially unacceptable due to the differences from the norm that are exhibited by him. It can be considered that the earliest and most undifferentiated sense of identity arises out of the encounter of maternal person and small infant; an encounter which is one of mutual trustworthiness and mutual recognition. This is, in all its infantile simplicity, the first experience of what later becomes love and admiration and can be called a sense of hallowed presence, the need for which remains basic in man. Its absence or impairment can dangerously limit the capacity to feel identical, when adolescent growth makes it incumbent on the person to abandon his childhood and to trust adulthood and, with it, the search for self-chosen loves and incentives.

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Deprivation of goodwill in any or all of the above aspects will so compound the basic deficits of the infant that the degree of handicap can be intensified. This not only sets the child apart from his family, causing in some cases infantile depression and subsequent withdrawal, but begins the process of accentuating the difference that handicap imparts, and draws a greater gap between the individual and the society of which that person is part. Identity then is closely related to the development of personality, and to the capacity of each person to meet the opportunities of their culture. It is purposeful to understand the ways in which problems in particular areas of personal development might contribute to a defective identity, and possibly to a handicapped personality. This in turn affects all degrees of learning disability. It is particularly important to stress the phases of widening social radius and developmental crisis for if, due to segregation, the child is not allowed appropriate encounters with his peers at this stage then his cultural development will be interfered with in a way that will set him apart and will influence his life in a devastating way. The areas of growth of identity affect all developing children, whether normal or handicapped, and where the needs of the child, in these respects, are fully responded to, there will be a positive contribution made to the potential of a brain-damaged or other handicapped child. Contrarily if the needs of a child, who is normal at birth, are not addressed in those respects, then a handicapped identity may ensue. This in turn may lead to a disturbed personality, low self-esteem, and deficient learning capabilities. All of which might be a sufficient basis for a child to be afflicted, unnecessarily, with a mild learning disability. If we are prepared to try and counter the onset of learning disability by use of genetic research, counselling and engineering; then surely we would not be going beyond our moral duty in trying to reduce the amount of learning disability that might be induced by deprivation? If this is a moral obligation, is it not also our moral duty to protect deprived children from the difficulties, problems and indignities brought about by learning disability? Or will this cause other harms that would affect identity and personality in other ways? I believe we must attempt to make a realistic assessment of the situation of each individual, in order that we may determine if action, or lack of it, is likely to cause most harm. Of course this can at best only be a pragmatic assessment, we could all have been different in many ways had the circumstances of our developing years been different. However for those who lack autonomy to any degree, and this includes children, society must do what is best for those persons or it will be failing in its moral obligations. If we are going to improve the lot of the handicapped person, is it sufficient to start this when the handicap is thoroughly evinced? Ought we not to put in place systems of support, in anticipation of what otherwise may be a sure and certain progression towards some degree of isolation and weakness of identity, thus predisposing to learning disability ?

COMMUNICATION
One of the basic elements of a stable society is adequate and proper communication. In the past, because of learning difficulties there were some persons who were not able to talk, let alone read or write. Others who were physically handicapped may have been unable to walk unaided which added to or may even have been the cause of some intellectual impairment, because they were treated differently. In these latter cases it was assumed that because they didn't respond in what was considered to be an appropriate manner, they couldn't understand. As a result they were, at best Page 3 of 9

patronized or, at worst neglected. It was not realized that communication might be possible in non-standard ways. It was not recognized that communication was possible between handicapped people who could not even read, write, or talk in any acceptable way. Nor was it understood that their apparent lack of communication did not mean that they had nothing to communicate. Indeed in many cases they knew exactly what they wanted but were not able to communicate it in a way that was understandable, at that time, to those who were responsible for their care. Therefore in as much that, as individuals, they had needs which were not being addressed, they were subject to immense frustration because like most people they had an instinctive feeling that their needs were their rights. This was emphasized by Ruth Sienkiewicz-Mercer when she related in her book [I Raise My Eyes to Say Yes] that it was obvious that other, more able, people were getting the very things that she was silently demanding, but was not herself receiving. Because of this lack of awareness the duty of care falls far short of what is required, largely through ignorance of the potential of individuals to communicate in non-standard ways. There is a concept of instinct which indicates that there is a likelihood of it being present even in the most profoundly handicapped person, and in many instances it may be available for further development. Failure to accept this, or to act upon it, will not only lead to immense frustration for the learning disabled person, but will probably be a cause of diminished flourishing. Communication difficulties are a basic problem for such people, and it is not unexpected that this leads to frustration and anger. If the person cannot express his feelings in a way that will allow due consideration to be given to his wants or needs, or if in his so doing he still does not transmit these in an understandable way, there will probably be only two options open to him: One, to repress his feelings, thereby eventually becoming introverted and probably depressed; or two, to explode with the pressure of frustration. This latter need not be an aggressive or violent action, but may be unacceptable behaviour to attract attention to his situation; or to put it more simply, by being uncooperative. There is a view that some parents contribute to the poor communication by continuing to infantilize their adult learning disabled son or daughter. They may readily be prepared to speak for them, rather than let the person develop their own means of communication. It is thought that this sometimes occurs to diminish embarrassment to parents caused by the unsocial characteristics of the learning disabled person. Research has shown that the communicative competence of adults with a learning disability and who are or were living in hospital is less than that of those who live in community settings. Various research projects have taken place since the 1970s and these, firstly, have underlined that adults with a learning disability can no longer be seen as 'children who have never grown up', and secondly, show that the science of language in context, or pragmatics, has brought together experts from differing disciplines, who have drawn attention to the communicative competence of adults with a learning disability. Some authorities have divided communicative competence into two parts; pragmatic and linguistic. They have defined pragmatic competence as the ability to use language; and linguistic competence as the ability to produce and interpret syntactically and phonologically, well-formed sentences. It has been suggested by them that the latter has received far more attention than the former. As a consequence of this there has been an oversimplification of the communicative competence of adults. Others are critical of the use of child-standard tests with adults because they concentrate on linguistic comparisons which reveal nothing about pragmatic competence. Researchers have found that the adults in their study could Page 4 of 9

take part in a conversation and utilize the same types of controversial controls and constraints as adults who had no learning disabilities, despite the apparent differences in linguistic competence. Studies of this sort indicate that adults with a learning disability are more able to give information than their formal linguistic abilities would suggest. A communication environment, should be understood as a reflection of the actual demands that are placed on the individual and the opportunities they are given to communicate. It is created by those who are involved in caring for the individual person. If they do not establish an adequate communication environment then its appropriateness will be reduced. The degree to which this environment is established will inevitably affect the communicative competence of the individual person. Patients who were on wards in hospitals for the learning disabled, and others who were segregated into groups of a similar disability, did not have the same opportunities to develop communicative competence. Other studies show how the expectations of non-handicapped individuals can have an important influence on the communication skills that the handicapped person actually uses. This point is well illustrated in the novel by D. Cook [ Walter. 1978; Penguin Books ]; 'Walter was aware that he should be doing something, but did not know what, and rather than do something wrong ... he thought it wiser to do nothing'. It would seem therefore that this communication environment is related to the communicative competence of adults with a learning disability. Research shows that, by comparing two similar groups that were differentiated only by their living environment, those who lived in the community achieved higher scores on pragmatic competence, than did those who resided in hospital or in sheltered care. These findings were not precise or clear cut, and there was some overlapping between the two groups which might lead us to believe that there are also other environmental factors which will influence the person's communicative response, e.g. learning, health, and emotional environments. These differences were partly related to the levels of linguistic competence, and that these together with the communication environment will affect pragmatic competence. It is vital therefore that there should be the provision of appropriate settings of demand, expectation and opportunity for each individual. Often the lack of appropriate levels of this demand in the hospital setting is a variable factor in the limitation of attainment of language skills. Why should this be so? It has been shown that it is the organisational characteristics of the hospitals, such as the size of the wards, staff to resident ratios, and the degree of autonomy within the wards, that were likely to affect the residents' behaviour and skills. Hospital subjects were often not as well occupied as their community based counterparts, and as a result their communication skills were either under-developed or under-utilized. It is therefore evident that it is not just rehabilitation to a community setting that is their need, but also the development of a programme which will make adequate demands upon them to communicate and, where necessary, give them the appropriate communication environment; from which will accrue a fertile ground for the development of their communication skills. That said, the problem with poor communication environment is not restricted to those who are severely learning disabled, nor to those who are in learning disability hospitals. Most of the one million people who are assessed as being mild or moderately learning disabled, will be resident in the community; never having been in hospital, and probably not having spent very much time outside the immediate family circle. Indeed their very handicap might well be centred on a lack of adequate communication.

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Learning is a continuous experience, and with very young children this will usually be on an entirely informal basis. Right from the moment of birth, the more fortunate children will be parented in an atmosphere of communication. Both mother and father will spend time talking to their infant, and even if at that stage it does not understand the words, it will slowly be absorbing the sounds, the tone of voice and the associated expressions on the face of the speaker. Communication from the Latin communicare is closely related to communitas, which means not only community, but also fellowship and justice in men's dealings with one another. Society is based on the possibility of people working together for common ends, in a word, cooperation. Without proper communication, co-operation may well be reduced. Equally, without proper communication between parents, siblings and the new infant, there will be a lack of learning, an absence of shared knowledge, information and experience. This will in turn lead to a deficient personality; for delays in learning may never subsequently be made up, and this will reduce the quality of personhood in the individual. Where this has happened, consideration needs to be given to the realisation of some equality by artificial means. It is unlikely that help will be at hand in the family in which this situation has developed. Therefore some form of personal advocacy will be necessary to assist the handicapped person forward, and to allow that person to take an appropriate place in society without the developmental deficiencies reducing the quality of life below an acceptable level. This should be judged by the individual, if possible; or by those closest to that person, again if possible and appropriate. Failing those possibilities then, it will need to be assessed by society at large, though this will probably be undertaken by those who have a statutory responsibility for that person if there is no one closer. To the extent that good communication skills are not allowed to develop, then there will also be enormous cultural divergences between the handicapped person and his fellows. This will contribute markedly to a subsequent ambiguity and how that person fits into his local community, and his acceptance by it. The most recent research however has determined that children refine their reactions to particular events and formulate specialized skills within a coherent general ability to perceive. They are born with several complementary forms of knowing, and they use these to develop experience of the particular world they are in, assisted by communicating. The story of Joey, has perhaps more than any other, indicated to all who have read this account that the potential of handicapped people to communicate in alternative ways has been vastly underrated. 1

In 1982, Joey Deacon's story was the subject of a paper by D. Ellis in the journal Developmental Medicine & Child Neurology, describing how after fifty years' residence in an institution for the mentally handicapped, a new strategy was devised by which Deacon's intelligence could be assessed; the strategy showed that he had a normal level of intelligence. The assessment strategy is described and some of the implications are discussed. However, with the help of his friends, Ernie Roberts, Tom Blackburn and Michael Sangster, Deacon was able to write an autobiography, entitled Tongue Tied, that was published by Mencap as part of their Subnormality in the Seventies series. The book provided insight to its readers into the lives of people with disabilities. With royalties raised from book sales and donations, Deacon and his friends purchased a home in which they then resided.

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One of the important developmental issues for any individual would appear to be the environment in which they grow up and the quantity and quality of communication that involves them. Where the environment and the communication are bad, their failure to comprehend and compete will bring about an intellectual deficit. This not only needs to be understood for the benefit of those who have experienced these deficits, but also for future generations of children for whom it may be possible to avoid communicative failure, intellectual deficit, and cultural incompetence. For those who are organically damaged, then recourse to good practices in terms of developing communication skills is the least they can expect from the society in which they live. If this is not provided then once more society will have to contribute in other less satisfactory ways in order to make up the gaps that will ensue in that person's life. At a basic level we have to consider what steps we should take to maximize a person's happiness if that person depends upon others not only for day to day help with such things as assistance with personal needs, food preparation, and help with mobility etc. If we decide that it is right to do these things, then it also must be reasonable to understand how the person's needs can be fulfilled in a way that meets his personal wishes. The alternative to this is to be paternalistic in the way we attend to his requirements. The danger with that is the possibility of returning to the institutional rle, wherein lies the further disadvantageous prospect of fulfilling the needs of the system rather than the individual. It is important therefore that provision is made for someone to act as an advocate for a person who is unable to act in their own best interests. Such a person will need to be trained in personal advocacy, and also in communication skills so that a proper and understanding relationship can be established between the advocate and the learning disabled person.

BEHAVIOUR
The largest single problem with the learning disabled person is said to be poor or unacceptable behaviour. However it must be considered to what extent this stems either from internal problems and/or from the environment and culture in which the person has developed. The common precursor of behavioural problems is usually varying degrees of learning disabilities. The improvements to be gained in such functional areas will be assisted by a better understanding of the learning processes, and the employment of more sophisticated techniques. The late Jack Tizzard was a pioneer in this area of learning for the severely subnormal. His early work indicated that adults, with even this degree of handicap, showed an unsuspected capacity to learn simple tasks, to respond to incentives, to retain learning and to transfer these effects to other tasks. Others were to follow and to establish that Tizard's studies were valid. During the era of full employment it was seen that simple industrial tasks were well within the scope of the learning disabled person. Even more important were the observations that there was marked contrast between the passive, dependent, handicapped person and one whose time was filled and fulfilling. The Portage Project was established at this time and was developed in order to identify the strengths and weaknesses of the individual handicapped person. The originators instituted a system of training home visitors so that parents could assist their child by the use of behavioural techniques for assisting their child's development.

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Important though these developments were, they concentrated facilities on those least handicapped. Others, who did not fit so easily into the 'adult training centre' concept, were often left without day-time occupation, except of the most trivial nature. More recently education programmes have been introduced at technical colleges. Part of the advantage of attending these is that there is an attempt at integration of the learning disabled person with his more normal peers. Regrettably the success of this relies heavily on the personal involvement of individuals who are prepared to spend time making friendships with the handicapped person, and in making them feel welcome and accepted. Until the education of the handicapped is fully integrated, this artificial ploy will rarely succeed in doing anything other than reducing, for some, the social barriers that have been created by the educational system. If we accept the policy of educational and social integration, then we should also recognize that the establishment of employment or work orientated activity is also part of the strategy of normalisation. This might be seen as full citizenship, or the opportunity to lead useful and productive lives within the social and economic fabric of families and communities. This goal might go some way towards ensuring that people with learning difficulties have available to them the maximum range of meaningful options or choices from which selection can be made in the light of individual preferences and desires. Not only does this infer independent living options but also the right to enjoy the maximum personal independence by dint of the opportunity to participate in sustained productive and gainful employment. This right will be of mutual benefit for, by gaining the maximum economic self-sufficiency, there will be less call on benefits from the public purse. Claims have been made for this economic advantage to be given to the learning disabled, and they set out the legislative strategies that are required to support it. In these are included; the funding of job placement services; eligibility for fringe benefits and protection programmes where travel or relocation is required. Those who have concomitant disabilities should not have their benefits reduced because they have gained employment. Employers who seek to give employment to learning disabled persons should have the benefit of appropriate tax credits, particularly if they provide special arrangements such as attendant support and transport. It is also essential for individual programmes to be established for those who are likely to remain outside normal (or even any) employment. Such programmes do not need to subscribe slavishly to the work ethic. It is unrealistic to expect many learning disabled people to follow simple, repetitive, work-like programmes for the sake of conforming to the idea of the necessity of being occupied by such tasks. It is far better that such persons be encouraged to pursue their personal areas of interest, no matter how distant these may be from work. For example most sports have now got some degree of professionalism associated with them. If sportsmen can earn a living from what was once their recreation, then surely we can make it possible and encourage the learning disabled person to make their day occupation something that they enjoy doing, and to apply all possibilities that would make this remunerative. In dealing with behavioural problems there is seen to be some danger from treating the symptoms and not the cause. There is evidence that the precursor of such problems relate not only to learning difficulties, but may be due to the frustrations brought about by lack of satisfying occupation. It seems more appropriate therefore to concentrate on training for potential areas of occupation, or if this is not possible, to try and pursue the interests of Page 8 of 9

individuals and make of these a purpose that can be identified and subscribed to by the learning disabled person. Day Centres often restricted their intake, and may have been restrictive in the ways in which training was offered. This runs counter to a provision of choice, and if someone is limited in their ability then it seems right that they should be offered activities in which they can interest themselves. As has been mentioned the Technical Colleges have introduced various courses, largely of a practical nature, but some have also endeavoured to extend the basic educational period. Well planned and organized courses can be of benefit, and should be funded appropriately. However care must be taken with selection of students to avoid the cultural ambiguity of conflicting responses due to the contrast of abilities. It is essential that confidence is bred by building in the possibility of success and achievement. Again there should be choices which make allowance for short concentration spans. Also the cultural divide will be a possible obstacle to opportunities for friendship, but this will hopefully recede when earlier education is integrated. Mutuality of benefit is not only an attractive aim for its own sake, but also because it will reduce the financial commitment that society needs to make in supporting the learning disabled person in the community.

In concluding this brief view of identity, communication and behaviour I hope that I have made a case for more attention being paid to the early developmental aspects of an individual's life. We also need to understand all the possibilities for communication and, eventually where possible, suitable occupation. If we are successful in achieving these then we should avoid the onset of difficult behaviour later, and set the seal on a more rewarding and acceptable lifestyle. Alan Challoner 1993

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