Medical and more general social perspectives and terms indicate that people labelled as disabled are considered ‘different’ or ‘others’ in relation to those considered to be ‘normal’ (Moser 2000; Grue and Heiberg 2006; Grue 2009). Researchers in disability studies state that the label is typically applied as an unproblematic concept that ‘only’ denotes functional limitations – for example, with movement and in fulfilling tasks in everyday life (Kuppers 2001; Tøssebro 2004). However, disability as a word or concept is ambiguous and contested, both in its usage and how it is understood, and has been critically examined within the social sciences, as well as in disability studies (Wendell 1996; Overboe 1999; Kuppers 2001; Grue 2011). In discussing the phenomenon of psycho-emotional disablism, Carol Thomas also problematizes hurtful words and social actions, intended or unintended, endured by people with impairments (Thomas 2007, 72). Research based on subjective experience and children‘s perspectives shows that children who are viewed as disabled tend to resist being labelled as different or ‘other’ (Jahoda et al. 2010). They usually position themselves with and like any other child, and describe themselves in terms of their appearance and personality, rather than as disabled or impaired (MacArthur et al. 2007; Bjorbækmo 2010; Dreyer, Steffensen, and Pedersen 2010). They categorize their diagnosis or disability as something they happen to possess and manage; some of them assert that it is not a ‘big deal’ in their life (Connors and Stalker 2007; Shihako-Thomas et al. 2009). Despite their diagnosis and/or physical limitations, children can adapt to activities and friendships at school and in their neighbourhood, as well as while spending time with friends who have the same or a similar diagnosis (Bjorbækmo and Engelsrud 2008; Asbjørnslett, Engelsrud, and Helseth 2012). These children want to be where things actually happen. Rather than focus on their limitations; they prefer to adapt in any way necessary to overcome obstacles in their environment (Asbjørnslett and Hemmingsson 2008; Harding et al. 2009). Nevertheless, they inevitably encounter structural elements in their daily lives, as well as in cultural practices of both adults and children, based on discriminatory conceptions of ‘normality’ and ‘difference’ (Davis and Watson 2001). School is an institution where children are expected to fit into pre-existing educational and social processes and practices based on ‘normality’ that allow little room for investigating or understanding differences (Davis and Watson 2001). In particular, children who are classified/labelled with learning difficulties/intellectual ‘impairments’ suffer from being marginalized from regular classroom activities (Wendelborg and Tøssebro 2010). Some teachers appear to take little responsibility for ensuring that all of the children in their classes have equal opportunities to learn (MacArthur et al. 2007). One explanation for this identified by Egilson and Traustadottir is that some teachers find it difficult to stray from the standard curriculum (Egilson and Traustadottir 2009). Despite these obstacles, children who are viewed as disabled speak positively about school (MacArthur et al. 2007).
Like other researchers, we believe that the views of children and their parents often differ, and that many studies omit significant elements of a child's own story, in which he/she is are represented as an active social agent (Garth and Aroni 2003; Uprichard 2008). Despite this argument, parents/caregivers remain the primary source for insights into the experiences of children; child informants remain notably rare in published studies. This article seeks to partially redress this paucity of research by exploring how some children who have been labelled as ‘disabled’ experience their efforts to demands of their everyday life.
As previously stated, a growing number of social scientists have challenged the view of disabled people as ‘different’. Margrit Shildrick, for example, a professor and reader in gender studies, challenges the concept of disability that treats it as a ‘universalizing discourse’ (Shildrick 2009). These discourses, she argues, view disability as a single classification and treat people with disabilities as ‘others’, a perspective that distorts normative expectations and destabilizes the self-identities of disabled persons. She believes that disability should be viewed as an existential phenomenon, which requires people to be understood through their own experiences (Shildrick 2009).
Shildrick acknowledges that if ‘we abandon the conventions of fixed identities of disabled and non-disabled people, we enter into “risky territory”’ occupied by people who manage to evade the grasp of normalization and, to a certain extent, by researchers/theorists willing to move beyond the perceived demands of ‘emancipatory’ research (Shildrick 2009, 144, 177). She argues that academics and the general public, including those who live with disabilities, need to be willing to take that risk. If we breakthrough the impasse of existing forms of discourse on disability, Shildrick asserts, we can achieve new and more productive thinking about people's own embodiment that is not dependent on labelling bodies as able or disabled. She recognizes that deploying this post-conventional discourse involves uncertainty and fluidity, as well as risk, but believes that this type of ‘dangerous discourse’ yields a more accurate description of the experience of disability than researchers can obtain using conventional medical models and definitions. Phenomenologist and dance researcher Tone Pernille Østern takes a similar approach. The word ‘disability’, she points out, is burdened by a set of associations that make it difficult to relate to experiences outside its predefined parameters. She suggests substituting the term ‘differently bodied’, which would include everybody and offer an alternative to normative embodiment (Shildrick 2009; Østern 2009).
The discourse on disability is an ongoing process, continually changing and being renewed (Kuppers 2001; Shildrick 2009). This study is meant as a contribution to this process. It is informed by the arguments of Østern and Shildrick that disability studies could benefit by developing a phenomenological perspective, which holds that everybody, regardless of how they are defined by society, has valuable experiences that can contribute to the field of research.
To elicit everyday life experiences, we arranged qualitative interviews with both children and their parents, though we regarded the children as our primary informants. The interviews took place during the transitional period between primary and secondary school. This provided an opportunity to explore and analyse the children's expectations and the changes in their life situation as they entered adolescence. Three researchers conducted the initial interviews, which took place as the children completed primary school. We also interviewed their parents at this time, to get their take on the situation of the children, particularly the transition to secondary school. Thus, our data on the everyday life concerns of the children,as well as their life changes and expectations for their future, was comprised of material from both children and their parents (Christensen and James 2008). In this article, we have relied primarily on data from the children, though we have sometimes complemented or contrasted their perspectives with data from the parent interviews.
The present study was based on 39 tape-recorded interviews with the children and 22 tape-recorded interviews with parents. To investigate how children and their parents experienced everyday life events, we asked questions about a specific day, i.e., the day before the interview occurred (Haavind 1987; Andenæs 1991; Gulbrandsen 2010). This ensured that real events and experiences formed the basis for reflection and a joint exploration of meaning by the child and the adult (Gulbrandsen 2010). The life mode interviews consisted of open questions such as ‘What happened then?’ and follow-up questions like ‘Is that usual?’ Within these parameters, the form and content of the interviews varied according to the predilections of the interviewee. Some took place in the child's home, others at school. The duration ranged from 20 to 75 minutes. Most of the children readily offered rich descriptions of their everyday interests and activities, but some tended to answer questions with a ‘yes’ or ‘no’ or some other short phrase. We interviewed each child between one and four times, usually three times. We also interviewed the mother, the father or both parents of each child, either at home or at their workplace, some once and some twice. These interviews lasted between 35 and 70 minutes.
Fifteen children (nine boys and six girls) between 12 and 14 years old participated in this study. All of them were living in or near the city of Oslo, Norway and had been diagnosed as having a physical impairment, including one who had a visual impairment. Two had learning impairments as well. At the time of the interviews, all of the children were attending mainstream schools.
The sample was recruited by health professionals such as occupational therapists and school nurses in the communities where the children lived. We contacted them directly, and asked them to identify potential informants and contact the parents for us. The parents were informed about the project verbally, in an information letter and through a brochure. Parents who gave their consent were asked to see if their children were willing to participate in the project. If a child agreed, the health professionals notified us and we made direct contact with the parents to arrange our first interview with her or him.
This study was approved by the Regional Committees for Medical and Health Research Ethics (REC) and the Norwegian Social Science Data Services (NSD). It adhered to all of the legal requirements for the protection of personal information and prevention of recognition based on diagnoses. In addition to requiring informed parental consent (Brinkmann and Kvale 2008; Kvale and Brinkmann 2009), we ensured that each child was given a consent letter to read and discuss with his or her parents and sign it before we made direct contact (Helseth and Slettebø 2004; Hill 2006).
Partly out of respect for ethical considerations in an interview situation, we made every effort to listen attentively to the children, as well as to remain aware and conscious of the overall situation and the informant's own perspectives (Brinkmann and Kvale 2008; Neumann and Neumann, forthcoming). The responses and reactions of the children encouraged the researchers to reflect upon their own normative preconceptions. These reflections played a crucial role in shaping the central theme and theoretical approach of this study (Greene and Hill 2006; Neumann and Neumann, forthcoming). Our use of the dichotomous terminology of ability/disability before we had heard and understood the perspectives of the children could have biased our research and may have hindered the development of new and productive ways of thinking about the phenomenology of embodiment (Shildrick 2009). However, we believe that by placing our own experience ‘at risk’ and acknowledging our own prejudices, we were able to achieve insights into the significance of the label ‘ordinary kids’ (Graham and Fitzgerald 2010; Neumann and Neumann, forthcoming). The children's modes of participation in the interviews varied from simple politeness to serious interest, depending on the information provided by the parents and on the personality of the individual child. The level of participation may also have at least partially reflected the parents’ degree of engagement in the project; some felt that it was in their child's interests to participate and encouraged her or him on that basis (Hill 2006).
The initial analysis was performed by the first author, who conducted most of the interviews; it continued throughout the transcription of the texts (Kvale and Brinkmann 2009). Some interviews and transcriptions were completed by two research fellows. As a result, the analysis of these interviews did not benefit from enrichment based on the context of the interview and direct contact with the interviewee. The quality of the interviews varied; some of them suffered from a lack of in-depth information. As a result, some of the children's interview transcripts were used more extensively than others. In all cases, the researchers and the authors of the article discussed the assumed meaning of the text material.
Following the initial analysis, the authors read the material several times to discern core meanings in the text and get a sense of the whole (Danaher and Briod 2006; Kvale and Brinkmann 2009). Based on the impression that the children did not talk about themselves as disabled, the authors proceeded to a more advanced analysis, posing two questions: (1) How did the children express their self-identity in the interviews? and (2) How did the children talk about their everyday life experiences? The authors determined that the most salient aspect of the material was the children‘s self-identity as ‘ordinary kids’. Since this concept was used to capture the way in which the children talked about themselves and their lives as ‘ordinary’, but expressed this in different ways, we also reflected on how they applied the concept. Their reflexive usage indicated awareness that they had embodied the feeling that being thought of as ‘different’ and treated as ‘other’ was a risk in everyday life situations. We therefore determined that being viewed as ‘ordinary’ was an important issue for our children and used it as a prior focus in our analysis. We also decided to look at how the children adapted to demands of everyday life from this perspective, and the hard work they sometimes undertook in an effort to see themselves and be seen as ‘ordinary’.
In our analysis, we frequently used quotations from children and parents to remain as faithful to their own voices and expressions as possible. We used theoretical perspectives about disability discourse in terms of subjectivity, embodiment and self-identity to highlight some of the cultural ideas embedded in the expressions that subjects used in their interviews (Kuppers 2001; Østern 2009; Shildrick 2009). The authors concluded the process of examining and rewriting the text by conducting a final collaborative verbal and written analysis (Van Manen 1990). The importance of ‘being an ordinary kid’ is the overriding message in our analysis and our presentation of results. Based on this perspective, we present three subthemes: rejecting the disability label, adapting to norms and expectations, and working hard to be ‘an ordinary kid’.
‘Being an ordinary kid’ always seemed to be the prior and preferred self-identity when children talked about themselves and what they did in everyday life. The children talked about ‘community and inclusion’ from a self-identity of being active kids engaged in a variety of activities, such as a theatre group, singing in a choir or scouting, which demonstrated their capacity to participate with their peers. The children talked about the importance of being with other children on a regular basis, and described experiences they had shared with their classmates and friends. They described some of these experiences positively, reflecting their feeling of inclusion in a community. For example, playing in a marching music band created a positive feeling of mutual dependence and of ‘a rhythm inside you’. These feelings were not constrained by the child's use of a wheelchair or other functional challenges. In describing their participation, the children consistently expressed an ‘ordinary kid’ self-identity.
The children in our study did not present themselves as being disabled, nor did they talk about themselves as disabled. Some of them observed that being positioned as disabled by others was problematic. They expressed their discomfort by explaining that they did not want to be viewed as ‘different’ among their friends, pointing to the disability label's association with difference. One teenage girl said that the term ‘disabled’ referred directly to her lack of ability and dysfunction. These associations were incompatible with her self-identity. She went on to note that she appreciated having friends who ‘don't consider me different from anyone else’; their attitude supported her perception of herself. Through these statements she demonstrated her resistance to being called disabled, a term that she felt was encumbered with negative associations and put her at risk of being positioned as ‘different’ within her local community of friends.
The disability label sometimes aroused a sense of alienation and discomfort in the children. The clearest expression of this came from a 13-year-old boy in response to an interviewer's initial query: ‘What does it mean to be disabled?’ Clearly surprised, he asked quietly, ‘Am I disabled?’ He had not considered himself to be disabled and expressed discomfort at being placed in this category by the researcher. In his view ‘others’, slightly worse off than he could be classified as disabled, but this was not a term that he considered relevant to himself. His answer reminded the researcher of her own prejudice. Despite her intention to contribute to new understandings of disability, she had employed the term in accordance with the very tradition that she sought to problematize.
Some children stated that instead of labelling themselves as ‘disabled’, they used their diagnosis to talk about problems related to their condition. ‘I say that I have back damage’, a 13-year-old girl stated, ‘not that I am disabled’. By using the word ‘damage’, she and other children pinpointed their limitations or the lack of capacity and function that they had to cope with as part of their daily bodily experiences; something they needed to ‘overcome’ when working with or negotiating with others. Children also referred to their diagnosis when they wished to make certain conditions understandable to others. ‘When you have [this diagnosis] many things could be the matter, not only physical’, one boy explained, ‘and these things with my legs are pretty stupid’. He considered his legs the main obstacle to his desire to play football. Not only were such specific descriptions of damage and diagnosis convenient for explaining problems to friends, the children found they also provided guidelines for professionals who already had knowledge of the situation based on a diagnostic clue, e.g., ‘When the doctor knows my diagnosis, he knows what to do’. The children's thinking was that the personal inconvenience resulting from a diagnosed issue or damage could be treated as part of their individuality, so they could still view themselves as similar to others.
Children in our study would often push boundaries and adapt their appearance and behaviour to what they considered to be ‘normal’ among the children they were with. This view was exemplified by the comments of a 12-year-old boy and a 13-year-old girl. ‘I usually walk [with orthopaedic aids] at school, because it seems more normal’, explained the boy, who was still in primary school, ‘but when I'm with friends who are in a wheelchair I use my wheelchair more’. The girl, who had entered secondary school, declared that she would not use an electric wheelchair or the bike with supporting wheels that she had used in primary school.
These children adapted their strategies of locomotion to what was considered ‘normal’ in a particular context. What was important to them was to a get around in a similar manner to the children around them, whether that meant walking or using a wheelchair. For the teenage girl, using a wheelchair embodied a subjective sense of embarrassment. To avoid this feeling at secondary school, she preferred to walk. The choices of this boy and girl reveal that children are at least sometimes willing to exert great effort to get around as their peers do rather than risk the stigma they may already endure in other areas.
In learning situations at school these ‘ordinary kids’ expected to be included in their classmates’ ‘mutual struggles’ to complete activities such as homework, even if they knew that this meant surmounting extra challenges. One boy classified with learning difficulties questioned why he had not received any homework, which he believed should be expected of him, as well as his classmates. Such expectations required sufficient support if he were to succeed. The same boy commented that the individual help provided by his secondary schoolteachers was not always what he felt was required. Other children in this study, however, pointed out that teachers had to be accessible to the whole group. ‘I cannot expect that he will only take care of me’ one put it. ‘In this group, everybody must be allowed to join in’. These experiences show that individual needs sometimes exceeded a teacher‘s availability, however the children also acknowledged that in a learning environment they had to adapt to the common interests of the entire group.
The children were concerned about their own situation, but they did not want the constraints on their own abilities to affect other children. Sometimes, not being able to fulfil normative requirements put children on ‘the side-lines’, in various learning situations. For example, a girl who participated in physical training commented: ‘In the gym I'm always sitting … sitting on the side-lines, but I think that's okay, because there are some things I can't do, or I don't have anything to do, so I can sit and watch the others’. Her adaptation to not being able to perform in the same way as the other children was to support what the others did. This attitude of behaving and adapting in a manner that was best for all was also evident in leisure-time activities. One boy, for example, told the interviewer, ‘I like football, but I can't play myself, even though I have friends playing, because it would ruin the flow’. Sports were considered culturally rewarding, and the most popular children were said to participate in handball or football. The children in our study were functionally excluded from these activities. In addition to the intrinsic attractiveness of sports, the children in our study cited the interdependence and long-lasting friendships that they fostered as important reasons for participating. One 12-year-old boy who had been on his local football team for a long time told us how he was able to continue playing:
As this example shows, innovative strategies coupled with mutual understanding and support from teammates and trainers could help some children participate in a variety of sporting activities. In this case, the boy's lack of strength, balance and physical capacity ultimately compelled him to give up playing the sport he loved. However, his interest in football and his local long-lasting friendships he developed while participating continued to be meaningful to him, and he remained a supporter of the team.
Often, when we have games, I'm allowed to play … . If I just attack, I can switch with someone else on my team between attacking and defending, so I don't have to run across the whole field; I just run half … . If we rush, I ask if I can stay back on defence … . Now, I also play table tennis twice a week.
As a rule, the children did not problematize their situation and were motivated to meet the challenges they encountered in everyday life. At the same time, meeting these challenges demanded hard work and raised concerns about their use of time and energy to function on a daily basis. Keeping up with schoolwork and getting good grades were a particular concern in the transition to secondary school. The pressure anticipated was depicted in various ways. ‘I can't always manage everything’, one 12-year-old girl admitted when discussing her schoolwork, ‘but I'm almost there’. A 13-year-old girl was less confident while expressing this fear when she had just started secondary school: ‘I have difficulty dealing with a lot of pressure, and I thought it would be really exhausting … with just loads … loads … loads of homework that I wouldn't be able to get through’. Another girl added that twice a week she was spending four hours on homework. Her mother agreed: ‘The time she spends on homework is insane; three to four hours if she finishes it properly’. The mother of a 12-year-old girl with a visual impairment said that her daughter spent more time on homework than her schoolmates and still lagged behind. She admired her daughter's determination to succeed in secondary school, but thought that wouldn't be enough: ‘She is trying … She‘s got a brave mind-set … She is prepared … [but] it is going to be too much’.
When organizing and completing schoolwork was a problem, the difficulties were often related to a child's learning and/or physical difficulties. The considerable stress that could result from a lack of physical capacity meant that learning difficulties could sometimes be exhausting. This often raised questions for the children, such as ‘I wonder if they [the teachers] know about my diagnosis; I feel like I have to do so much’. The child who said this suggested that his diagnosis might have served as a guideline to help teachers understand his situation. It also illustrates his concern that the teachers be qualified and support his efforts to be an ‘ordinary kid’ by accommodating his personal challenges in the school environment.
Despite their worries about performing well enough, the majority of the children in this study did well in secondary school. Most of them achieved average or better grades, and did not consider the workload more onerous than it had been in primary school. They established good friendships with classmates. Most said they liked the greater freedom in secondary school and thought the teachers there were ‘more fun’. Being able to choose among different subjects helped some of them feel ‘more relaxed’. A few children, however, experienced feelings of loneliness and academic failure; they found the school requirements too challenging.
Some of the children also reported that their leisure-time activities, including jobs, required hard work and placed them in mentally demanding situations. ‘I would like to sell all [the papers], but it takes such a long time’, said a boy who had been diagnosed as having physical and learning impairments. ‘Still, I don't know of any other job I would like better’. Selling newspapers was a common activity among boys his age, and he did it voluntarily during his leisure time. Four months later, he continued to talk about his work and the challenges it presented: ‘I have some regular customers, but I don't always remember which ones I've been to. I don't remember who wants to buy and who doesn't, because the apartment buildings have so many doors’. This boy exemplified the great efforts that the children in this study expended in their daily life, based on their expectations of the normal behaviour of their peers. The demands of his job were considerable: time management, planning, organizing and remembering what to do. From the experience of failure this boy, as well as other children frequently demonstrated his capacity to identify new ways of doing things and new things to do, partly by soliciting the assistance of others by asking; ‘what can I do instead?’
In this study, we have examined everyday life demands from the experiences of children who are labelled with disability and thereby positioned as disabled by others. In this section, we will discuss three elements of our analysis. First, our main finding: The children in our study present a preferred self-identity as ‘ordinary kids’. Second: These children adapt to norms and expectations in everyday life. Third: These children expend great efforts to be perceived as ‘ordinary’ by others and be included in the broader community.
Like children in other studies on similar issues, our young informants did not want to be viewed as ‘different’. When comparing themselves to other children, they focused on similarities rather than differences (Connors and Stalker 2007). In their role as active kids, they told us that they were embodied with feelings of ‘rhythm’, mutual dependence and inclusion with other children. They stressed the importance they gave to sharing and participating in different social arenas with others, corroborating previous research (Grue and Heiberg 2000). This conclusion supports the value of Østern's argument for viewing all children as ‘differently bodied’, which creates a space that includes a wide range of different and individual abilities and avoids the conceptual exclusion of some children based on a perceived deficit in abilities. Her perspective might be beneficial in modifying professional understanding and attitudes (Østern 2009).
The term disabled can be problematic when introduced in everyday situations and language. Some children associate a label of ‘disabled’ with alienation and discomfort. Furthermore, as other researchers have observed, the word disability is ambiguous and contested (Thomas 2007; Grue 2011). The children in our study preferred to explain certain challenges they encountered by characterizing them as diagnoses and damages, which could be integrated into their self-identity and used to specify particular difficulties and provide guidelines for professional practice. Our results reinforce the view that labelling children without considering their self-identity risks destabilizing it (Shildrick 2009; Jahoda et al. 2010). This supports the argument of researchers who have called for a discussion of how the concept of disability is embedded and used in professional practice and everyday language (Wendell 1996; Watson 2002; Tøssebro 2004; Edwards 2007; Shildrick 2009; Jahoda et al. 2010).
Our study illuminates how children often extend categorical boundaries to include what they consider ‘normal’ and their commitment to what they consider to be the common interests of all children. School is an example of an institution in which exclusive normativity is embodied (Shildrick 2009). The children in our study demonstrate that they can adapt to this institutional normativity; for example, by choosing not to use technical aids in certain situations. Such adaptations are consistent with the findings of prior studies concluding that children find strategies that allow them to position themselves as competent, normal subjects relative to the people around them (Bjorbækmo and Engelsrud 2008). However, the sometimes strenuous efforts of these children to adapt to norms and expectations in their environment also indicate that they do not want their reduced capacity to impede other children. They sometimes support what other children do by viewing activities such as physical training exercises or football games from ‘the side-lines’. These children sometimes have the experience of being on ‘the side-lines’ in learning situations. Some of them express a desire for more help than they actually get. As other researchers have pointed out, children with learning difficulties run a higher risk of being marginalized from learning activities than other children (Wendelborg and Tøssebro 2010). At school, the children in our study expected to be included in ‘mutual struggling’, for example, with homework, which enabled them to try to make sense of the school world in the same manner as other children (Jahoda et al. 2010). Our results problematize whether schools can truly promise equality for all children and on what basis this might be possible. They indicate that the adaptations of some children to normalizing processes create a danger that they will not be ‘heard and seen’ appropriately for their particular needs. Schools and other institutions should be alert to this danger, as well as to the contrary risk that being ‘heard and seen’ as ‘disabled’ could lead to exclusion from social and scholastic situations.
Some environments include all ‘differently bodied’ (Østern 2009) children. The support and understanding of teachers, trainers and other children is vital to ensure that all children are included, both at school and in meaningful leisure-time activities. Being an ‘ordinary kid’ often requires hard work and judicious use of time and energy. The children who need to meet these challenges are motivated to do so. As the study of Harding et al. shows, they adapt to and overcome obstacles, rather than focus on how their impairment might limit their participation (Harding et al. 2009). The transition from primary to secondary school is particularly challenging for some children. Based on normative expectations, both children in our study and their parents expected pressure, including heightened demands in homework and organizing schoolwork. Some of these children spent a lot of time keeping up with other children and overcoming myriad everyday challenges. They had to maintain a ‘brave attitude’ while ‘preparing themselves’ to succeed in their life goals. Occasionally, this entailed experiencing failure. Teachers need to be aware of the amount of stress and exhaustion that some children experience due to deficits in capacity. As one of our informants observed, the challenge for the teacher is to provide sufficient attention to children who do not require special accommodations while meeting the diagnostic requirements of children who do. Our study revealed the great efforts children with disabilities are willing to make based on their own conceptions of the school and leisure-time behaviour of their peer group. Our results are consistent with those of other studies, which found that these children usually develop strategies for overcoming limitations and constantly adapt to their life situation as active social agents (Uprichard 2008).
Children who live with a ‘disability’ label and are treated as disabled see themselves as ‘ordinary kids’, even though they are aware of being ‘different’ in some respects. They adapt to everyday life and ‘work’ to ‘normalize’ themselves at school and in their leisure time. Most significantly, our results indicate importance of eliciting the perspectives of the children themselves when investigating their daily lives and experiences. What they reveal may challenge the ways in which researchers, as well as health and school authorities, currently perceive and label some children, and suggest new strategies to create more inclusive environments that enrich the lives of all participants.
Special thanks to the children and parents who participated in this study, sharing their unique experiences. The authors would like to acknowledge Kari Opsahl and Bennedichte R. Olsen for collaborating and conducting interviews to this study. We would like to thank the peer reviewers for qualified and valuable support. This article is part of an interdisciplinary research project Professional Practices and Children‘s Participation, at Oslo and Akershus University College (OAUC), which has contributed to an overall inspiration and support. This study received financial support from The Research Council of Norway (RCN) and Oslo and Akershus University College (OAUC).
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