Kristan Baker, BAppSc(OT) (Hons), is an occupational therapist working at The Rozelle Hospital, NSW, Australia. At the time of this study, he was a student in the Undergraduate Honours Program, School of Occupational Therapy, The University of Sydney.
In practice, the majority of occupational therapists concern themselves with activities of daily living and productivity-related issues (Graham, 1990; Gregory, Fairgrieve, Anderson & Hammond, 1992; Powell, 1994). Occupational performance is often viewed in limited terms of self-maintenance and productivity. Additionally, therapists place emphasis on: a) the biomechanical, sensory motor and cognitive components of performance; and b) the physical environment. Less emphasis is placed on: a) leisure and rest aspects of performance; b) the interpersonal and intrapersonal components of performance; c) the social, sensory and cultural environments; and d) the body/mind/spirit core elements of human existance, all of which, at least theoretically, influence a person’s occupational performance (Chapparo & Ranka, 1993). These restricted views of occupational performance do not mirror the profession’s holistic theoretical and philosophical foundations (See for example, Meyer, 1922).
This paper explores an area often neglected by occupational therapists, friendship and social interaction, from the perspective of four children who have fragile X syndrome. In schools, no single profession has addressed the social needs of children, especially those with disabilities (Damon & Phelps, 1989). This is a significant omission considering that, both quantitatively and qualitatively, children with disabilities have few, if any, friendships with children without disabilities (Alper & Ryndak, 1992; Kishi & Meyer, 1994; Sabornie, 1985; Zetlin & Murtaugh, 1988). Perhaps this situation could be rectified by school-based occupational therapists actively working to identify and support children’s social needs.
In doing so, occupational therapy could implement a broader service with the adoption of practices that focus on social needs across a variety of practice settings. As Bonder (1993, p. 211) stated, ?for occupational therapy to provide a holistic view of meaningful activity, we must understand the relationship between physical, psychological, and social variables.? At present however, the nature of the relationship between social variables and occupational performance in children (particularly those with disabilities) is unknown and needs to be investigated. This paper begins to explicate this relationship through examination of the occcupational nature of social experiences of four children with fragile X syndrome as explained by constructs contained in the Occupational Performance Model (Australia) (Chapparo & Ranka, 1996).
THE STUDY
The data for this examination is obtained from an ethnographic study (Baker, 1996) that explored the social experiences of four children with fragile X syndrome, a genetic disorder causing a range of physical, intellectual and behavioural disabilities (Reiss & Freund, 1990). The four children attended four different schools, with two attending regular schools. They all lived within family units of differing configurations, but consisting of at least one parent. Single in-depth interviews were conducted with each child’s parents, teachers and two occupational therapists, as well as three half-day participant observation sessions at each child’s school, making a total of ten interviews and twelve observation sessions. The empirical data yielded detailed case studies of each child’s social experiences. Grounded theory method (Strauss & Corbin, 1990) was used to analyse interview transcripts and observational fieldnotes.
Social experiences were composed of two dimensions – social interaction and friendship – and of the interrelationship between them. The dimension of social interaction was indicated when children who were not friends played together. This dimension was characterised by: a) reliance on social skills and a social medium, b) minimal emotional content, c) non-restrictive involvement of children, d) spontaneity, and e) the fostering of a sense of belonging. The dimension of friendship was uniquely characterised by: a) free will and selection; b) mutual satisfaction of social needs; c) disobedience of authority; d) similar ability, interests and personality; e) an emotional bond; and f) an inherent mystery that was more than the sum of the parts identified here. The dimensions of social interaction and friendship were also interrelated when friends participated in social interaction as an overt display of their friendship.
The study supported previous research by finding that the four children’s social experiences were lacking when compared to children without disabilities, particularly out-of-school activity and involvement with children without disabilities. However, in contrast with previous research, each child still valued and enjoyed a diverse range of friendships and social interactions. The study identified numerous personal and environmental factors contributing to the quality of each child’s social experiences which are summarised progressively throughout this paper.
The following sections are devoted to exploring the children’s social experiences from an occupational performance perspective relative to the eight primary constructs of the Occupational Performance Model (Australia) (Chapparo & Ranka, 1996): space, time, external environment, components of occupational performance, occupational performance roles, occupational performance areas and finally occupational performance.
SPACE
All the social experiences of these children occurred within the infinite boundaries of their internal and external domains. Body structures necessary for social interaction were housed in each child’s body – their internal space. Of greater significance to social experiences was the area surrounding the child - external space - in which all friendships and social interactions took place. The corporeal area around a social experience - physical space (Chapparo & Ranka, 1996) – was not a great influence. Nevertheless, it ultimately determined the type of social interaction possible within its physical boundaries. Of greater influence was the child’s perception of this corporeal area - felt space (Chapparo & Ranka, 1996). The children typically had negative perceptions of felt space when an area was unfamiliar, small, cluttered, loud or populated with other children. Similarly, positive views of felt space usually occurred where environments were familiar, spacious, more ordered, not overly loud and with fewer children. However, not all children adhered to this pattern. One child had entertaining social experiences in a positive felt space that was small, enclosed by oddly shaped buildings and with many teachers about. In fact, his neighbourhood was deemed by him to be a negative felt space (probably because of a detrimental social history with neighbourhood children), despite it being larger, quieter and unpopulated when compared to his school. Generally, the children avoided negative felt spaces, subsequently reducing opportunities for social experiences. Positive felt spaces, on the other hand, were usually preferred and contributed to the creation of opportunities for social experiences.
TIME
The children’s social experiences were influenced by time - physical time (Chapparo & Ranka, 1996) – and restricted to certain times throughout the day. Some biological rhythms (eg, sleep), determined by physical time, restricted opportunities for social experiences in the twenty-four hour day. Opportunities to engage in social experiences were further restricted by the child’s, and the immediate sociocultural context’s, interpretations and manipulations of physical time - felt time (Chapparo & Ranka, 1996). This resulted in the greatest opportunities for social experiences being at school. Even there however, felt time imposed restrictions. Children only attended school five days a week and did not attend at all during school holidays. The school ?day? itself was also subdivided by felt time, beginning just before nine o’clock in the morning and finishing just after three o’clock in the afternoon. Still further, social opportunities at school were decreased during educational periods and increased during recess and lunch periods. These leisure periods ran no more than ninety minutes each day and time still had to be allocated to eating in these periods.
Social experiences were influenced by space and time in both physical and felt senses, as defined by Chapparo & Ranka (1996). These findings correspond to the postulations made in the Occupational Performance Model (Australia) regarding the impact of space and time on occupational performance. Social experiences, as observed in these children, are partly explained by notions of space and time that are central constructs of occupational performance.
EXTERNAL ENVIRONMENT
Social Environment
Each child’s relationships (if any) with other children - social environment - were particularly important with regard to social experiences. There are several layers to the social environment, of which the most exterior is society. Society is discussed in the section on Cultural Environment in this paper, since it was the mechanism through which societal beliefs and ideals were transmitted from person to person that affected social experiences. Of more relevance to the social environment was the presence of other children and the child’s family and school, as part of the neighbourhood/community layer of the social environment.
| a. | Presence of Other Children. |
Other children existed within the children’s social environment, some of whom were friends and others who were not. Two social situations involving the presence of other children mitigated against engagement in social experiences in these children: a limited number (quantity) and restricted range (variability of personal attributes) of other children present. Generally, a social environment with few children and/or a low degree of variability between children decreased opportunities for social experiences, and vice-versa. However, this trend was not always observed. The children’s preferences for particular children was an important factor, in that each child chose with whom they interacted or became friends. This choice depended upon the number and range of children present, where a larger number and range increased the chances of meeting their personal preferences, and vice-versa. For example, many social experiences of children attending segregated schools (for only children with disabilities) were limited by an inadequate number and range of other children. In contrast, the potential for social experiences at regular schools (for children with and without disabilities) was enhanced by a larger number and range of other children.
| b. | Family |
The family was a nucleus for social experiences – a crucial foundation upon which social opportunities were provided and removed. Sound familial relationships allowed the child to venture from the family unit and explore their social environment. Informants gave examples of tense or estranged family relations that removed this exploratory foundation. As one teacher said, “if there is a problem happening at home it does surface, often, in the playground.” Informants went on to describe how, subsequently, social experiences were damaged by the child getting “into fights or … not playing with anyone … just standing out as being different.” The influence of parents on social experiences was particularly significant considering that the children were largely dependent on their parents for out-of-school social experiences. Parents used a variety of techniques to facilitate social experiences. Indirectly, parents provided advocacy, increased exposure to social environments, and overcame barriers to community integration. Directly, parents facilitated social experiences with encouragement, social engineering, education, social identity development, and activity arrangement. However, parents occasionally interrupted social experiences with disciplinary action and separation of friends. Parents sometimes prioritised other occupational performance tasks and routines that rendered their child’s social needs to a secondary concern.
| c. | School |
School was an incredibly dense social environment that greatly affected social experiences. School staff created and removed opportunities for social experiences. There were instances where executive staff decisions (that were sometimes economically derived) disrupted close friendships. Attitudes of school principals partly determined the behaviour of staff and students and dramatically impacted upon social experiences, both positively and negatively. Autocratic teaching or therapy styles, emphasising strict discipline and one-on-one teaching, quelled social behaviour. Egalitarian styles, emphasising fair and flexible discipline and groupwork, supported social behaviour. Many teachers and therapists created social opportunities using some of the following facilitation strategies. On some occasions, formal facilitation strategies were adopted that included direct instruction, social engineering, social skills training, buddy systems, education and peer tutoring. On other occasions teachers preferred to use informal facilitation ? an active, sensitive and cooperative process relying on natural social processes with minimal professional interference.
The existence of school policy that guided professional conduct had a tremendous impact on social experiences. Several professionals stated that they were “bound” by general school policies, even though they knew it to be detrimental to friendships and social interactions. Policies regarding socially appropriate (especially age-appropriate) behaviour lead teachers to restrict certain social interaction and punish children for behaving inappropriately on the basis that, as one teacher said, “it is for their own good.” Policies relating to the standard transition from primary to secondary school disrupted some children’s social experiences. One parent stated that “the concept of going to a new school is so frightening for him because it is a new social situation.” Policy regarding the enrolment of children into schools and classes determined with whom the child could interact. Policies outlining the integration of children with disabilities into regular schools had differing effects on social experiences. On the one hand they supported social experiences with their socially oriented purpose. Many professionals commented that “a lot of (integration) is done purely … to increase social interaction.” Enrolment policies determined the number and range of other children with whom the children could interact or make friends. On the other hand, some integration policies were criticised because they “singled out” children with disabilities and subsequently impaired their social experiences. Such stigmatising integration policies pertained to special education programs, academic curriculums, and the procedures for integration into regular schools.
Cultural Environment
| a. | Society |
Social experiences were influenced by Australian culture, or “society,” and the beliefs and practices therein: the cultural environment (Chapparo & Ranka, 1996). The effect was twofold. First, certain people within society believed and practiced a reluctance to accept children with disabilities. Second, this reluctance meant that some children with disabilities perceived children without disabilities as intimidating and were therefore reluctant to approach them. However, at one of the children’s schools these societal beliefs and their negative effect on social experiences were rarely observed. This school’s belief system contrasted that of ?society? in that it was based on principles of equality and acceptance. Subsequently, the child at this school had many enjoyable social experiences.
| b. | Ethos |
Ethos was defined as the underlying and distinctive climate or spirit of a group. Two significant factors in determining the school’s ethos were student-teacher relationships and discipline. There were two types of ethos observed across the four schools: an ethos of clemency and one of tyranny. An ethos of clemency was observed to be conducive to social experiences. Student-teacher relationships were characterised by: empathic emotional regard, propensity to care, mutual respect, frequent displays of affection, discipline that considered social experiences, and infrequent misbehaviour by children. The style of discipline comprised: minimal aggression and greater assertion (sharp and clear tone of voice, low volume, minimal physical manipulation), egalitarian treatment of children, rationality, explanation of the wrong committed and an indication of how to correct it. An ethos of tyranny was observed to be deleterious to social experiences. Student-teacher relationships were characterised by: apathetic emotional regard, lack of concern and respect, frequent displays of hostility, discipline that did not consider social experiences, and periodic misbehaviour by children. The style of discipline comprised: aggression, authoritarian treatment of children, irrationality, and minimal explanation of the wrong committed and how to correct it.