Article
Teachers’ and parents’ views on the Internet and social media usage by pupils with intellectual disabilities Martin Molin
Journal of Intellectual Disabilities 2015, Vol. 19(1) 22–33 ª The Author(s) 2014 Reprints and permission: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/1744629514563558 jid.sagepub.com
University West, Sweden
Emma Sorbring University West, Sweden
Lotta Lo¨fgren-Ma˚rtenson Malmo¨ University, Sweden Date accepted: 14 November 2014
Abstract This article reports experiences from a Swedish study, discussing teachers’ and parents’ views on how young people with intellectual disabilities use the Internet and social media. Five semi-structured focus group interviews were conducted with teachers (n ¼ 8) in special programmes in upper secondary schools for pupils with intellectual disabilities and parents (n ¼ 5) of pupils in the same form of schooling, and they were analysed with thematic analysis. Teachers more strongly emphasize a pupil’s use of the Internet for interactive purposes. Parents had expectations that the Internet could be a tool for gaining more awareness of one’s own disability and a way to meet other peer group pupils. Teachers’ and parents’ perspectives on the Internet and social media usage are important since it is imperative to show how support can be provided for young people with intellectual disabilities. Keywords intellectual disabilities, Internet, parents, participation, teachers
Introduction Today there is a new generation of young people with intellectual disabilities in Sweden, who have developed new and alternative ways of conducting themselves to increase societal participation Corresponding author: Martin Molin, Department of Behavioural and Social Science, University West, Trollhattan, SE 461 86, Sweden. Email: [email protected]
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and develop identity (Lo¨fgren-Ma˚rtenson, 2005, 2008; Mineur, 2013; Molin, 2008). One strategy used by youth with intellectual disabilities in accessing the Internet is to emphasize the desire to be like others and to be with others and to claim the right to participate in society (Molin, 2008). The Internet has become an arena where this process frequently takes place. People with intellectual disabilities often have linguistic and communicative limitations that on the one hand could benefit from new places of inclusion and belonging that the Internet offers but on the other hand could be problematic. Recent research has shown that family members and caring staff are often the primary supports for new technology use (Palmer et al., 2012). Many of these supportive individuals experience ambivalence in handling both technical and moral issues that follow an increased use of the Internet. Young people’s activities on the Internet are a growing research field, but relatively few studies have focused on the Internet usage of persons with intellectual disabilities (Chadwick et al., 2013). However, we argue that teachers and parents are an important part of the contextual conditions in which belonging and identification processes take place (Lo¨fgren-Ma˚rtenson, 2005). In this article, we refer to the term intellectual disability according to Schalock (2011: 228): The term intellectual disability is increasingly being used internationally. This increased usage reflects the changed construct of disability, aligns better with current professional practices that focus on functional behaviours and contextual factors, [and] provides a logical basis for individualised supports provision.
The bond between relatives and staff members and the young persons with intellectual disabilities is often very close and strong (Lo¨fgren-Ma˚rtenson, 2005). Opportunities to develop selfdetermination and independence can therefore be restricted in relationships that are characterized by dependency upon others (Lo¨fgren-Ma˚rtenson, 2004). Parents and staff tend to exhibit strong feelings of responsibility and feelings that are often manifested through different forms of control and/or restrictions, especially about private spheres like love and sexuality (Lo¨fgren-Ma˚rtenson, 2008). Furthermore, media focuses heavily on the risk of being deceived on the Internet and on the easy access to pornography (Lo¨fgren-Ma˚rtenson, 2008). The most intense concern has been articulated in relation to how children and young people use the Internet. The surrounding world then sees young people with intellectual disabilities as particularly exposed and vulnerable. Several reports have described traditional care spaces (such as group homes, daily activities and sheltered employment) as partly isolating, denying access to the labour market, and people with intellectual disabilities in Sweden often live a restrictive social life (Larsson, 2006; Molin, 2008; Umb-Carlsson and Sonnander, 2005). In addition, transition to adulthood often involves searching for and examining strategies for managing diverse belongings, such as coming to terms with the special programme school or overcoming a weak civic status as ‘disabled’ (Borland and Ramcharan, 2000; Molin, 2010). The Internet can be described as a new form of a community arena that creates other opportunities for belonging and alternative – and more multidimensional – identities (Lo¨fgrenMa˚rtenson, 2005, 2008; Molin and Gustavsson, 2009; Rapley et al., 1998; Seale, 2001). Research concerning young peoples’ activities on the Internet has increased, especially in school settings (Didden et al., 2009; Emerson and McVilly, 2004). We found rather few studies, though, linked to identity formation processes and pupils with intellectual disabilities. This is noteworthy since the use of new technology has considerable promise to promote better quality of life and better life outcomes (Braddock et al., 2004). Another trend in current research seems to be the investigation of how the Internet can be made more accessible for people with intellectual disabilities. One example is Palmer et al. (2012), showing that the device design of new technology
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and the ease of use is an issue for both individuals with intellectual disabilities and the person who is assisting, usually a family member. Another example is Kennedy et al. (2011), reporting a project that aims to increase the social inclusion of people with intellectual disabilities to the World Wide Web and investigating the best practice for building websites ‘accessible to the intellectual disability community’ (Palmer et al., 2012: 29). Scandinavian researchers have described a new generation of young individuals with characteristics of having a different way of relating themselves to their everyday life. One such trait is the desire and ability to assert their rights and to demand justice and recognition (Gustavsson, 1998; Molin, 2004; Szo¨nyi, 2005). For instance, Szo¨nyi (2005) showed how pupils within the special programme provided different kinds of expressions of ‘ordinary making’ activities in order to present themselves both like – and unlike – others. We assume that the Internet and social media play an important role in these individual’s efforts to shape their identity, but surprisingly few studies appear to shed light on aspects that can be linked with belonging and identity. One exception is Lo¨fgren-Ma˚rtenson’s (2008) study of young people with intellectual disabilities and their ways of handling issues of love, sexuality and coexistence on the Internet. The author describes the Internet and ‘digital rooms’ as a new free zone for people with intellectual disabilities, in which one can socialize without transparency from professionals and/or interdependants. These new virtual spaces create both opportunities and risks for users, especially when it comes to developing alternative identities that are not linked to common experiences of stigmatization and alienation. Lo¨fgren-Ma˚rtenson (2008) describes these processes as people with intellectual disabilities developing the so-called ‘social scripts’. It is claimed that the informants seem to strive for an authentic social role, in which they do not lie and make things up to the same extent as others do. The informant wanted to present an honest and true image of himself or herself, where the omission of the disability was not perceived as a lie.
The present study: Aim and objectives Pupils’ usage of the Internet does not take place in a vacuum. In this article, we argue that contextual conditions such as parental and staff (teachers) views are of great importance in order to understand young people with intellectual disabilities and their strategies for managing diverse belongings. The qualitative and exploratory approach (Taylor and Bogdan, 1998) is applied since previous research has revealed knowledge gaps in this field (Chadwick et al., 2013). Here we discuss the first phase of a study based on focus group interviews that concerned the use of the Internet among pupils with intellectual disabilities from the views of teachers and parents. The overall aim is to describe and analyse parents’ and teachers’ views on young people with intellectual disabilities and their opportunities for and barriers to using the Internet as an arena for expressing alternative identities. This study is an initial part of a larger project aiming to study pupils with intellectual disabilities and their identification processes on the Internet, based on the perspectives of staff, parents and pupils. The pupils’ views will be gathered and analysed in the next phase. The research questions for this stage of the study were: What characterizes teachers’ and parents’ views on young people with intellectual disabilities and their self-presentations on the Internet? How do teachers and parents perceive opportunities and barriers of using the Internet as an arena for expressing alternative identities? In what way do teachers and parents handle their feelings of responsibility according to questions of the Internet usage?
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Methods Participants and procedure Altogether 13 parents and teachers were interviewed in this study. The teachers (7 females and 1 male) were all part of a special teacher programme at the advanced level for professional active teachers. Their ages ranged between 38 and 58 years, with a mean of 47.8 years. They were informed about the study in writing, the questions of interest and that their participation was voluntary. The interviews were completed as focus group interviews with five teachers in one of the groups and three teachers in the other. The interviews each took about 45–60 min and were conducted at the university by one of the authors. The parents (3 females and 2 males) were all parents of pupils in their last year of the uppersecondary special programme for pupils with intellectual disabilities. The pupils had different intellectual disabilities including autism, Landau-Kleffners syndrome, spina bifida, milder intellectual disabilities, and undiagnosed, low general intellectual capacity. One of the pupils was also a wheelchair user. The pupils went to the same upper secondary special programme class but varied in age between 18 and 20 years, with a mean of 19.4 years. The parents were contacted by letter and informed about the aim, research questions and participation and that participation was voluntary. Their ages ranged from 47–57 years, with a mean of 51.2 years. Four of the parents were interviewed in gender homogeneous pairs, except one woman who was interviewed individually (due to the sudden sickness of the other parent who was going to join the interview). The interviews each took about 60–90 min and were conducted by one of the authors, either at the university or at the local clubhouse of an interest group for persons with intellectual disabilities. Before interviewing parents and professionals, the ethnical board in West Sweden was consulted and their opinion was that the study, according to Swedish regulations, did not require formal approval from the ethical board. However, the study has been adapted to the Swedish ethical rules regarding the requirements of information, consent, usage of data and confidentiality.
Measures and analysis Interviews were conducted in groups with the teachers (focus group interviews) and in pairs with the parents (with one exception). Interviews in smaller groups or in pairs have the advantage that the participants are able to have a discussion about the subject of interest with each other. In addition, one motive for smaller parent groups was mainly ethical, since the pupils referred to in the interview were enrolled in the same class. The interviews were semi-structured with a set of pre-designed themes of questions, allowing the participants to express their own thoughts and experiences during the interview and, at the same time, providing the interviewer the possibility to control the topics and content being discussed. The themes for the interview guide were the same for both the teachers and the parents. The themes discussed were (1) the Internet as an arena for identity formation, love and sexuality, (2) attitudes and experiences of young people’s selfpresentations and Internet relations, (3) the Internet and its participative opportunities and (4) parents’ and professionals’ attitudes and coping strategies for how young people use the Internet. The interviews were recorded with a Dictaphone (in total 5 h and 29 min) and then transcribed (in total 73 pages). The transcribed interviews were analysed with a qualitative approach. A thematic analysis was used, which is a method of identifying, analysing and reporting patterns within data sets (Braun and Clarke, 2006). The first step of the thematic analysis is to get to know the data through transcribing, reading and rereading the interviews. Thereafter, statements were
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highlighted in order to systematically code interesting features in relation to the research questions. The different codes were later organized into potential themes, that is, all data relevant to the theme were gathered in search of the themes. The emergent themes were designed to encapsulate the content of the data set; to ensure this, data were systematically reviewed and refined, and the themes were redefined. Finally, the themes were named in order to reflect the content in each theme. The analysis of the data resulted in the following three themes: (1) Agency – to act or to consume? (2) Arena – opportunities or risks? and (3) Adult responsibility – proactive or reactive? Each theme is stated as a question with two suggested answers and with each answer representing the different views of teachers and parents. When presenting the results, excerpts (citations) from the data were selected from the transcripts in order to highlight thoughts and expressions from the participants with regard to the specific theme. In order to maintain confidentiality, no names or identifying information will be given in relation to the different citations.
Findings: Teachers’ and parents’ views Agency – To act or to consume? The teachers mainly described pupils as the Internet actors (e.g. bloggers, chatting, contact seeking and socializing). In many ways, the Internet is considered a tool for shaping and negotiating identities. The teachers gave several examples of how pupils act – or interact – on the Internet. In the interviews, the pupils were described as ‘a bit isolated in real life’ and the great importance that the Internet has played in their life was emphasized. Some teachers spoke of pupils who use the Internet as their one and only contact network. Other teachers experienced a difference in the Internet usage between male and female pupils. They spoke in terms of girls being more ‘contact and relation seeking’, whilst boys more often used the Internet for ‘checking results and facts’. One interview revealed that: . . . they manage to find boyfriends and girlfriends all over Sweden – via Facebook for instance. (Teacher interview 2)
Listening to the voices of the parents provides us another part of the picture of young people’s Internet use. Whilst they described that their sons or daughters use the Internet very frequently and for a range of activities, they also described the participation as more passive in the sense that they consume what’s available on the Internet, but don’t add very much to the media. Information seeking seems to be the most frequent activity, but parents are also aware of the adolescent’s use of different social interactive forums, for example, Facebook. One girl was described by her mother as using the Internet for various activities, for example, seeking information, Facebook, blogging, looking up family history, music and photo editing. This girl also seemed much more active than the other pupils in the study in her use of the Internet by making contact with people, being active in different interest groups and blogging about her own activities. She also extended her online contacts to be offline contacts by initiating that meetings take place outside the Internet. However, this mother, as well as the other parents, does not have the perception that her children are selfdisclosing on the Internet. Although Facebook is used for keeping contact with relatives and friends, it’s mostly used for following others without posting any, or very little, information about oneself. According to one interview,
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She [the daughter] doesn’t write very much herself on Facebook status and so, she mostly follows others. (Parent interview 1)
According to the parents, their sons and daughters never share their feelings and thoughts with others. Communication and interaction, if it exists, is all about simple greetings or statements about one’s actions. This perception contributes to the lack of concern that parents express about their children’s Internet use.
Arena – Opportunities or risks? When teachers reflected upon the Internet and its participative opportunities, they primarily stressed topics of risks and dilemmas. On the one hand, they could see great openings in different kinds of arenas where the Internet plays an important role, but on the other hand, there was an obvious anxiety about pupils getting into troubling and dangerous situations. Several teachers pointed out examples of how pupils’ ‘naivety creates problems’ (Teacher interview 2), as they often do not see the consequences of their actions themselves. This naivety is often linked to the way in which pupils choose to present themselves on the Internet and in social media. As stated in one interview: They probably use the Internet like everyone else, but it is much more naive [ . . . ] people in the nearest surroundings are well aware of you attending the special programme school, but through Internet contacts outwards you can relinquish from that role – being like everyone else, and it creates a completely different identity [ . . . ] my experience is that girls often meet boys and are being used – but then they talk and chat with class mates far and wide: ‘you know, I met a guy the other weekend in this or that town . . . ’. (Teacher interview 2)
Notably, from the teachers’ interviews, there is another perception emphasizing the opposite approach of how young people might get themselves into problematic situations. Some pupils are considered being too cautious in contact-seeking activities on the Internet. This limits their opportunities to participate and develop social relations in everyday life, according to the teachers’ opinions: But, I’m also aware of those who . . . especially thinking of one guy who really . . . No, this is too dangerous! . . . and you can somehow hear the adult arguments . . . that one should not meet anyone, it’s too dangerous and adventurous. He would never cross that boundary. (Teacher interview 1)
The teachers’ views could be summarized with a statement from one of the informants, ‘the pendulum strikes higher in both directions’ (Teacher interview 1). The Internet has for some pupils contributed to a very positive development and participation. For others, acting on the Internet has resulted in tragic or unwanted consequences, such as being humbled for clumsy statements or experiences of being forced into unwanted sex. The parents were in general very positive about the Internet as an arena with great opportunities for their children’s everyday lives. However, face-to-face interaction is valued more highly by parents than by teachers. Several parents in this study saw the Internet as an alternative arena, in absence of others, where their children can maintain and create new social bonds for the future, ‘ . . . I think we have to push him so he goes even further with using the Internet and make new friends’ (Parent interview 2).
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Parents did not see the Internet as an appropriate place where their adolescents should try out different aspects of their identity and use more favourable self-presentations. They stated that their children do not have any need for alternative self-presentations and, furthermore, that their selfpresentations do not vary according to an arena. Even if parents in general are positive about the Internet as a social arena, they highlight some aspects of the Internet that are more difficult to handle for the children due to their intellectual disability. It is hard for young people to predict the result of their actions and to detect what is true and what are other people’s intentions. In one way, the written word makes it harder to understand due to the lack of facial expressions and body language, but on the other hand, it gives young people more time to reflect and think before responding (if not using chat). Parents also fear that their children will not trust people in their surroundings, for example, friends at school and, for example, recommendations to visit different web pages. On the other hand, they generally stick to what and whom they know and are not too keen to experiment, for example, visiting pornography or trying social media, as shown in the following interview: He refuses to use Facebook because in the school they have talked about how many people get hurt and become sad. So then he thinks that, no, it’s only stupid. More or less, like everyone only hurts each other on Facebook – it’s either Black or White, he thinks. (Parent interview 2)
This resistance about trying new things makes the parents calm, although they realize that put in a specific situation, their children could be hurt because they are naive and do not fully understand the nature of the Internet. For example, parents feel that the teenagers need to be reminded of the veracity of the information displayed on web pages and different social media sites. Another complication is the technology. Most adolescents and young adults manage the basics of the Internet use and more, but they do need help in understanding the nature of new apps, pages and other technology on the Internet according to their parents. Parents fear that when more and more elements of society are moved to the Internet (e.g. 24/7 society), the difficulties these young people have with the technology will in the future result in less participation in society in general. Situations and roles that they are able to fulfil today in traditional ways will be hard to handle in a 24/7 digital society due to the technical skills that are required. One interview revealed that: . . . if the Internet is not developed in a way that it will be easier to handle, persons with intellectual disabilities will have a harder time taking part in society. When more things move over [from society to the Internet] / . . . / I think that other people pick up and use the technology much quicker, but she needs more time to pick up and be apart / . . . / I mean when society gets more and more Internet-oriented, it will be more disabling for them [people with intellectual disabilities]. (Parent interview 1)
Adult responsibility – Proactive or reactive? Teachers report being both proactive and reactive in handling problems following ‘naive and inappropriate behaviour’ (Teacher interview 2) on the Internet. It is stressed that the teachers on one hand often train, inform and discuss ‘how to behave and write on the Internet – and what possible consequences might result’ (Teacher interview 2). One teacher gave the (proactive) example of showing the pupils ‘what kind of information Google had on them’ (Teacher interview 2). Several examples from the teachers are connected to classroom situations where different kinds of Internet-related conflicts needed to be sorted out and managed in order to go on with the planned teaching. In addition, the teachers experienced that the pupils often wanted them to talk to their
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parents when something went wrong ‘because they get scared’ (Teacher interview 2). However, there was a discussion between the teachers in one focus group concerning which status adults had among the pupils when ‘comparing their friend lists on Facebook’ (Teacher interview 1). Some argued that it was connected to a high status to have adults/staff in their friend list, whilst others considered it to be dorky and shameful. The teachers thought this topic was related to the pupil’s level of disability by saying: . . . I think many pupils would like to be friends with the teacher, but they don’t want to show it to others – once more – it is this double life again . . . . (Teacher interview 2)
Another topic that involved the teachers’ assumption of responsibility and the opportunities of working proactively or reactively was related to their peer staff’s general views on the Internet and social media. Both teacher groups had common experiences of anti-Facebook/anti-Internet colleagues, which made it more difficult to develop and work with questions of responsibility and the understanding of pupils’ learning and participation. One of the teachers claimed that teachers cannot be that ‘old fashioned’ (Teacher interview 1) when it comes to new strategies for learning, and in order to meet the pupils, the pedagogues need knowledge. As explained in one interview: We have started a new Facebook site which does not have any designation as ‘special or special need,’ but just ‘Year two, X-town upper secondary school’. The youngsters liked that. Unfortunately we have many anti-Facebook, anti-Internet colleagues in my group. Therefore, I have started my own ‘professional’ Facebook site – because my private Facebook has nothing to do with this. [ . . . ] If you don’t see the possibilities you can’t integrate topics in education training. (Teacher interview 1)
The parents are in a sense both active in promoting their children’s Internet activity, but in the same way, they argue that they do not feel the need to know what the adolescent does on the Internet. ‘He never shuts the door behind him, maybe sometimes to the living room so he doesn’t disturb, but it is not because he is on some ‘‘black-pages’’ or so’ (Parent interview 1). Parental monitoring in relation to the Internet use seems to be mainly about helping with more advanced or new technology (e.g., new apps and paying bills) and encouraging the children to use different aspects of the Internet. The latter is done both directly with suggestions about different activities and indirectly by discussing different things with their children that he or she may later look up on the Internet. Parents’ lack of interest about what and who their children are in contact with on the Internet is not about paying attention to their children, it is more about not being worried about their whereabouts on the Internet. The reason is partly because they do not think the adolescents are interested in content that could be considered suspicious. Furthermore, their children frequently tell them about the content they read on the Internet, just as they share information about other things that happen or that they come into contact with. The parents use these sharing of information situations to have discussions about what is on the Internet. I: Are you worried when your daughter uses Internet? M: No, never. Internet is what she likes and what she is good at. She doesn’t have any other interests. // . . . she is not very secret about her whereabouts, she tells me a lot about things she reads or for example about this Facebook friend she had. He started to be very, insulting about sex and that kind of things. But then she deleted him right away and sad that she was not interesting having him as a friend. (Parent interview 3)
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They do not think the children always understand what they come into contact with and the accuracy of that content. However, although the parents do have discussions with their children, they think that this is partly an assignment for school, especially the more sensitive and intimate parts (e.g. relations and sexuality on the Internet). In addition, parents think positively about their adolescents having relations and exploring their sexuality on the Internet, but with adult guidance, primarily from the school: It’s easier for them to talk about these things at schools. It’s easier for them [adolescents] to hear it from the school. (Parent interview 2) I think so too. It’s harder for us parents/ . . . / they [teachers] have other skills for how to talk with children. (Parent interview 2)
However, parents’ views are double-edged; on the one hand, they see great possibilities for their children and the Internet due to their specific disability, but on the other hand, they are afraid that due to their disability, their adolescents are more sensitive to different contents and interactions on the Internet. Parental action in relation to adolescent and young adult Internet use is very coloured by these feelings; they both want to encourage more Internet use and simultaneously encourage more time for face-to-face interactions. The challenge is to find a balance. . . . I don’t think my son should sit and look at the Internet for how things should be and how to find himself – he needs to experience things, be part of it, to explore himself / . . . / in the moment and not by the computer. (Parent interview 2) . . . But it is a positive thing if he [the son] can search the Internet and gain more knowledge about a specific disability and maybe find other peer group mates / . . . / find out that he is not alone. (Parent interview 2)
Discussion The findings show both similarities and differences in teachers’ and parents’ views on how pupils with intellectual disabilities use the Internet and social media. The teachers seem to emphasize to a higher extent pupils’ use of the Internet for interactive purposes. The teachers report experiences of pupils’ activities on the Internet and with social media that can lead to problematic or unwanted situations. On the other hand, the Internet is viewed as a provider of great opportunities for participation and access to a wider society. Furthermore, the parents did not show any great anxiety that their adolescents’ and young adults’ Internet usage would lead them into troubled contexts. This is an interesting change compared to earlier research (Lo¨fgren-Ma˚rtenson, 2008). The technology of the Internet seems to have developed to be a more integrating part of the community as a whole during the last 10 to 15 years. Some parents are a bit worried, but they claim that the Internet possibilities outweigh the disadvantages. There were some notable common features between the teachers and parents interviewed. Both informant groups pointed out that pupils mentioning of the type of disability or a special programme belonging did not occur in the adolescents’ self-presentations (Lo¨fgren-Ma˚rtenson, 2008). Also worth noting was the parents’ apprehension that the adolescent did not have any need for alternative self-presentations. In this sense, the parents had expectations that the Internet could be a tool for gaining more awareness of one’s own disability – and as an extension – meet other
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peer group friends. Parents expressed the view that Internet guidance was a school responsibility both when it comes to exploring sexuality and gaining more disability awareness. The findings illustrate complex prerequisites that the nearest adult environment have to handle when supporting young people using the Internet and social media. It is about technical, moral and – as shown above – identification issues. Jenkins (2008) claimed a theoretical position in which the concept of identification – in contrast to the more static and essentialist concept of identity – should be understood as an ongoing and evolving process. In this kind of process, people often try to find some kind of compliance between self-definitions and the surrounding’s definitions of the individual. Deaux and Ethier (1998: 301) asserted that social identities concern those constructions of self that relate the person to a collective or a category. This social identity work always exists within the scope of a continuous process of negotiation and renegotiation. Thus, the teachers and parents play important and decisive roles in this complex process. As the findings show, there were similarities between teachers’ and parents’ ways of conducting themselves regarding questions of adult responsibility. Both informant groups claimed their ambition to be both proactive and reactive in their efforts to support adolescents and young adults in different kinds of Internet activities. This was seen especially with the teachers who – as a consequence of pupils’ behaviour on the Internet – often discussed strategies of making the pupils more aware of the implications of being too naive with social media, for instance. However, teachers expressed difficulties in this kind of proactive and/or reactive work since many colleagues had an ‘old fashioned and anti-Facebook/Internet-approach’. Consequently, this naivety would be understood in relation to the levels of support and education available for young people with intellectual disabilities regarding Internet access. The present findings shed light on the paradoxical development of the Internet – creating conditions for both more and less participation in society for young people with intellectual disabilities. Teachers’ and parents’ perspectives on the Internet and social media usage are important since it is imperative to show how support can be arranged and handled for young people with intellectual disabilities. Recent research has shown that family members are often the primary supports for technology use (Palmer et al., 2012). In this process, there is both a risk and an opportunity that other aspects of the discussion will come into the foreground – for example, vulnerability. In addition, as Chadwick et al. (2013: 391) pointed out: Issues of safety, risk and protection online for people with ID have yet to be adequately investigated and these currently serve as reasons given for hindering people from gaining online access.
This implicates a need for more knowledge towards how young people with intellectual disabilities present themselves on the Internet.
Conclusion From this study, we have learned that the immediate adult environment host feelings and thoughts that most likely play an important role when supporting young people with intellectual disabilities in their usage of the Internet and social media. The analysis shows that the informants are ready to look beyond problematic situations in order to catch opportunities to develop and maintain social relations. Therefore, future research in forthcoming phases of the project should focus on how young people with intellectual disabilities experience and handle other people’s views on how they use the Internet. Other topics of interest would be characteristics of self-presentations, together
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with similarities and differences in how girls and boys with intellectual disabilities use the Internet and social media. Consequently, there is a need for further theory development concerning the significance of alternative identities and intellectual disabilities. Acknowledgements The authors would like to thank the parents and the teachers for participating in this study.
Funding The study has been funded by internal university financed research time.
References Borland J and Ramcharan P (2000) Empowerment in informal settings. In: Ramcharan G, Roberts G, Grant G, et al. (eds) Empowerment in Everyday Life: Learning Disability. 2nd ed. London: J. Kengsley. pp. 88–100. Braddock D, Rizzolo MC, Thomson M, et al. (2004) Emerging technologies and cognitive disabilities. Journal of Special Education Technology 19: 49–56. Braun V and Clarke V (2006) Using thematic analysis in psychology. Qualitative Research in Psychology 3: 77–101. Chadwick D, Wesson C and Fullwood C (2013) Internet access by people with intellectual disabilities: inequalities and opportunities. Future Internet 5: 376–397. Didden R, Scholte RHJ, Korzilius H, et al. (2009) Cyberbullying among students with intellectual and developmental disability in special education settings. Developmental Neurorehabilitation 12(3): 146–151. Deaux K and Ethier K A (1998) Negotiating social identity. In: Swim JK and Stangor C (eds) Prejudice: The Targets Perspective. San Diego: Academic Press, pp. 302–321. Emerson E and McVilly K (2004) Friendship activities of adults with intellectual disabilities in supported accommodation in Northern England. Journal of Applied Research in Intellectual Disabilities 17: 191–197. Gustavsson A (1998) Inifra˚n utanfo¨rskapet. Om att vara annorlunda och delaktig. [Insiders’ perspectives on being an outsider]. Stockholm: Johansson & Skyttmo fo¨rlag. Jenkins R (2008) Social Identity. London: Routledge Taylor and Francis Group. 3rd ed. Kennedy H, Evans S and Thomas S (2011) Can the Web be made accessible for people with intellectual disabilities? The Information Society 27: 29–39. Larsson P-O (2006) Arbetsplatskultur, socialt sto¨d och arbetets mening. Ansta¨llning med lo¨nebidrag och daglig verksamhet fo¨r personer med intellektuella arbetshandikapp. [Work place culture, social support and the meaning of work]. Licentiate thesis from the Department for Social work, University of Gothenburg. Lo¨fgren-Ma˚rtenson L (2004) ‘‘May I?’’ About sexuality and love in the new generation with intellectual disabilities. Sexuality & Disability 22(3): 197–207. Lo¨fgren-Ma˚rtenson L (2005) Ka¨rlek.nu. Om Internet och unga med utvecklingssto¨rning. [Love. Now. About Internet and Young People with Intellectual Disabilities]. Lund: Studentlitteratur. Lo¨fgren-Ma˚rtenson L (2008) Love in cyberspace. Swedish young people with intellectual disabilities and the Internet. Scandinavian Journal of Disability Research 10(2): 125–138. Mineur T (2013) Skolformens komplexitet – elevers erfarenheter av skolvardag och tillho¨righet i gymnasiesa¨rskolan. [The complexity of a special type of school]. Doctoral thesis from The Swedish Institute for Disability Research, Halmstad University. Molin M (2004) Att vara i sa¨rklass – om delaktighet och utanfo¨rskap i gymnasiesa¨rskolan. [Participant or Outsider? On different forms of participation in the upper secondary special programme for pupils with
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intellectual disabilities]. Doctoral thesis from The Swedish Institute for Disability Research, Linko¨ping University. Molin M (2008) Delaktighet i olika va¨rldar – om o¨verga˚ngen mellan gymnasiesa¨rskola och arbetsliv. [Different worlds of participation – the transition from upper secondary special programmes to working life for pupils with intellectual disabilities]. Postdoctoral Report, 2008: 2. Ho¨gskolan Va¨st/University West, Sweden. Molin M (2010) Intellectual disabilities and processes of belonging in the borderland between civil and welfare state arenas. In: Eriksson L-B and Winman T (eds) Learning to Fly – Social Pedagogy in a Contemporary Society. Go¨teborg: Bokfo¨rlaget Daidalos AB, pp. 202–223. Molin M and Gustavsson A (2009) Belonging and multidimensional self-expectations – transition from upper secondary special programmes to working life for pupils with intellectual disabilities in Sweden. La nouvelle revue de l’adaptation et de la scolarisation. 4(48): 255–265. Palmer SB, Wehmeyer ML, Davies DK, et al. (2012) Family members’ reports of the technology use of family members with intellectual and developmental disabilities. Journal of Intellectual Disability Research 56(Part 4): 402–414. Rapley M, Kiernan P and Antaki C (1998) Invisible to themselves or negotiating identity? The interactional management of ‘Being intellectually disabled’. Disability and Society 13(5): 807–827. Schalock R (2011) The evolving understanding of the construct of intellectual disability. Journal of Intellectual & Developmental Disability 36(4): 227–237. Seale JK (2001) The same but different: the use of the personal home page by adults with down syndrome as a tool for self-presentation. British Journal of Educational Technology 32(3): 343–352. Szo¨nyi K (2005) Sa¨rskolan som mo¨jlighet och begra¨nsning – elevperspektiv pa˚ delaktighet och utanfo¨rskap. [The special programme for pupils with intellectual disabilities as an opportunity and a limitation – pupils’ perspective on participants or outsiders]. Doctoral thesis from the Department of Education, Stockholm University. Taylor SJ and Bogdan R (1998) Introduction to Qualitative Research Methods. A Guidebook and Resource. 3rd ed. New York: John Wiley & Sons, Inc. ¨ and Sonnander K (2005) Comparison of the living conditions of adults with intellectual Umb-Carlsson O disabilities in a Swedish county and in the general population. Journal of Policy and Practice in Intellectual Disabilities 2(3-4): 240–248.
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Teachers’ and parents’ views on the Internet and social media usage by pupils with intellectual disabilities Martin Molin
Journal of Intellectual Disabilities 2015, Vol. 19(1) 22–33 ª The Author(s) 2014 Reprints and permission: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/1744629514563558 jid.sagepub.com
University West, Sweden
Emma Sorbring University West, Sweden
Lotta Lo¨fgren-Ma˚rtenson Malmo¨ University, Sweden Date accepted: 14 November 2014
Abstract This article reports experiences from a Swedish study, discussing teachers’ and parents’ views on how young people with intellectual disabilities use the Internet and social media. Five semi-structured focus group interviews were conducted with teachers (n ¼ 8) in special programmes in upper secondary schools for pupils with intellectual disabilities and parents (n ¼ 5) of pupils in the same form of schooling, and they were analysed with thematic analysis. Teachers more strongly emphasize a pupil’s use of the Internet for interactive purposes. Parents had expectations that the Internet could be a tool for gaining more awareness of one’s own disability and a way to meet other peer group pupils. Teachers’ and parents’ perspectives on the Internet and social media usage are important since it is imperative to show how support can be provided for young people with intellectual disabilities. Keywords intellectual disabilities, Internet, parents, participation, teachers
Introduction Today there is a new generation of young people with intellectual disabilities in Sweden, who have developed new and alternative ways of conducting themselves to increase societal participation Corresponding author: Martin Molin, Department of Behavioural and Social Science, University West, Trollhattan, SE 461 86, Sweden. Email: [email protected]
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and develop identity (Lo¨fgren-Ma˚rtenson, 2005, 2008; Mineur, 2013; Molin, 2008). One strategy used by youth with intellectual disabilities in accessing the Internet is to emphasize the desire to be like others and to be with others and to claim the right to participate in society (Molin, 2008). The Internet has become an arena where this process frequently takes place. People with intellectual disabilities often have linguistic and communicative limitations that on the one hand could benefit from new places of inclusion and belonging that the Internet offers but on the other hand could be problematic. Recent research has shown that family members and caring staff are often the primary supports for new technology use (Palmer et al., 2012). Many of these supportive individuals experience ambivalence in handling both technical and moral issues that follow an increased use of the Internet. Young people’s activities on the Internet are a growing research field, but relatively few studies have focused on the Internet usage of persons with intellectual disabilities (Chadwick et al., 2013). However, we argue that teachers and parents are an important part of the contextual conditions in which belonging and identification processes take place (Lo¨fgren-Ma˚rtenson, 2005). In this article, we refer to the term intellectual disability according to Schalock (2011: 228): The term intellectual disability is increasingly being used internationally. This increased usage reflects the changed construct of disability, aligns better with current professional practices that focus on functional behaviours and contextual factors, [and] provides a logical basis for individualised supports provision.
The bond between relatives and staff members and the young persons with intellectual disabilities is often very close and strong (Lo¨fgren-Ma˚rtenson, 2005). Opportunities to develop selfdetermination and independence can therefore be restricted in relationships that are characterized by dependency upon others (Lo¨fgren-Ma˚rtenson, 2004). Parents and staff tend to exhibit strong feelings of responsibility and feelings that are often manifested through different forms of control and/or restrictions, especially about private spheres like love and sexuality (Lo¨fgren-Ma˚rtenson, 2008). Furthermore, media focuses heavily on the risk of being deceived on the Internet and on the easy access to pornography (Lo¨fgren-Ma˚rtenson, 2008). The most intense concern has been articulated in relation to how children and young people use the Internet. The surrounding world then sees young people with intellectual disabilities as particularly exposed and vulnerable. Several reports have described traditional care spaces (such as group homes, daily activities and sheltered employment) as partly isolating, denying access to the labour market, and people with intellectual disabilities in Sweden often live a restrictive social life (Larsson, 2006; Molin, 2008; Umb-Carlsson and Sonnander, 2005). In addition, transition to adulthood often involves searching for and examining strategies for managing diverse belongings, such as coming to terms with the special programme school or overcoming a weak civic status as ‘disabled’ (Borland and Ramcharan, 2000; Molin, 2010). The Internet can be described as a new form of a community arena that creates other opportunities for belonging and alternative – and more multidimensional – identities (Lo¨fgrenMa˚rtenson, 2005, 2008; Molin and Gustavsson, 2009; Rapley et al., 1998; Seale, 2001). Research concerning young peoples’ activities on the Internet has increased, especially in school settings (Didden et al., 2009; Emerson and McVilly, 2004). We found rather few studies, though, linked to identity formation processes and pupils with intellectual disabilities. This is noteworthy since the use of new technology has considerable promise to promote better quality of life and better life outcomes (Braddock et al., 2004). Another trend in current research seems to be the investigation of how the Internet can be made more accessible for people with intellectual disabilities. One example is Palmer et al. (2012), showing that the device design of new technology
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and the ease of use is an issue for both individuals with intellectual disabilities and the person who is assisting, usually a family member. Another example is Kennedy et al. (2011), reporting a project that aims to increase the social inclusion of people with intellectual disabilities to the World Wide Web and investigating the best practice for building websites ‘accessible to the intellectual disability community’ (Palmer et al., 2012: 29). Scandinavian researchers have described a new generation of young individuals with characteristics of having a different way of relating themselves to their everyday life. One such trait is the desire and ability to assert their rights and to demand justice and recognition (Gustavsson, 1998; Molin, 2004; Szo¨nyi, 2005). For instance, Szo¨nyi (2005) showed how pupils within the special programme provided different kinds of expressions of ‘ordinary making’ activities in order to present themselves both like – and unlike – others. We assume that the Internet and social media play an important role in these individual’s efforts to shape their identity, but surprisingly few studies appear to shed light on aspects that can be linked with belonging and identity. One exception is Lo¨fgren-Ma˚rtenson’s (2008) study of young people with intellectual disabilities and their ways of handling issues of love, sexuality and coexistence on the Internet. The author describes the Internet and ‘digital rooms’ as a new free zone for people with intellectual disabilities, in which one can socialize without transparency from professionals and/or interdependants. These new virtual spaces create both opportunities and risks for users, especially when it comes to developing alternative identities that are not linked to common experiences of stigmatization and alienation. Lo¨fgren-Ma˚rtenson (2008) describes these processes as people with intellectual disabilities developing the so-called ‘social scripts’. It is claimed that the informants seem to strive for an authentic social role, in which they do not lie and make things up to the same extent as others do. The informant wanted to present an honest and true image of himself or herself, where the omission of the disability was not perceived as a lie.
The present study: Aim and objectives Pupils’ usage of the Internet does not take place in a vacuum. In this article, we argue that contextual conditions such as parental and staff (teachers) views are of great importance in order to understand young people with intellectual disabilities and their strategies for managing diverse belongings. The qualitative and exploratory approach (Taylor and Bogdan, 1998) is applied since previous research has revealed knowledge gaps in this field (Chadwick et al., 2013). Here we discuss the first phase of a study based on focus group interviews that concerned the use of the Internet among pupils with intellectual disabilities from the views of teachers and parents. The overall aim is to describe and analyse parents’ and teachers’ views on young people with intellectual disabilities and their opportunities for and barriers to using the Internet as an arena for expressing alternative identities. This study is an initial part of a larger project aiming to study pupils with intellectual disabilities and their identification processes on the Internet, based on the perspectives of staff, parents and pupils. The pupils’ views will be gathered and analysed in the next phase. The research questions for this stage of the study were: What characterizes teachers’ and parents’ views on young people with intellectual disabilities and their self-presentations on the Internet? How do teachers and parents perceive opportunities and barriers of using the Internet as an arena for expressing alternative identities? In what way do teachers and parents handle their feelings of responsibility according to questions of the Internet usage?
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Methods Participants and procedure Altogether 13 parents and teachers were interviewed in this study. The teachers (7 females and 1 male) were all part of a special teacher programme at the advanced level for professional active teachers. Their ages ranged between 38 and 58 years, with a mean of 47.8 years. They were informed about the study in writing, the questions of interest and that their participation was voluntary. The interviews were completed as focus group interviews with five teachers in one of the groups and three teachers in the other. The interviews each took about 45–60 min and were conducted at the university by one of the authors. The parents (3 females and 2 males) were all parents of pupils in their last year of the uppersecondary special programme for pupils with intellectual disabilities. The pupils had different intellectual disabilities including autism, Landau-Kleffners syndrome, spina bifida, milder intellectual disabilities, and undiagnosed, low general intellectual capacity. One of the pupils was also a wheelchair user. The pupils went to the same upper secondary special programme class but varied in age between 18 and 20 years, with a mean of 19.4 years. The parents were contacted by letter and informed about the aim, research questions and participation and that participation was voluntary. Their ages ranged from 47–57 years, with a mean of 51.2 years. Four of the parents were interviewed in gender homogeneous pairs, except one woman who was interviewed individually (due to the sudden sickness of the other parent who was going to join the interview). The interviews each took about 60–90 min and were conducted by one of the authors, either at the university or at the local clubhouse of an interest group for persons with intellectual disabilities. Before interviewing parents and professionals, the ethnical board in West Sweden was consulted and their opinion was that the study, according to Swedish regulations, did not require formal approval from the ethical board. However, the study has been adapted to the Swedish ethical rules regarding the requirements of information, consent, usage of data and confidentiality.
Measures and analysis Interviews were conducted in groups with the teachers (focus group interviews) and in pairs with the parents (with one exception). Interviews in smaller groups or in pairs have the advantage that the participants are able to have a discussion about the subject of interest with each other. In addition, one motive for smaller parent groups was mainly ethical, since the pupils referred to in the interview were enrolled in the same class. The interviews were semi-structured with a set of pre-designed themes of questions, allowing the participants to express their own thoughts and experiences during the interview and, at the same time, providing the interviewer the possibility to control the topics and content being discussed. The themes for the interview guide were the same for both the teachers and the parents. The themes discussed were (1) the Internet as an arena for identity formation, love and sexuality, (2) attitudes and experiences of young people’s selfpresentations and Internet relations, (3) the Internet and its participative opportunities and (4) parents’ and professionals’ attitudes and coping strategies for how young people use the Internet. The interviews were recorded with a Dictaphone (in total 5 h and 29 min) and then transcribed (in total 73 pages). The transcribed interviews were analysed with a qualitative approach. A thematic analysis was used, which is a method of identifying, analysing and reporting patterns within data sets (Braun and Clarke, 2006). The first step of the thematic analysis is to get to know the data through transcribing, reading and rereading the interviews. Thereafter, statements were
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highlighted in order to systematically code interesting features in relation to the research questions. The different codes were later organized into potential themes, that is, all data relevant to the theme were gathered in search of the themes. The emergent themes were designed to encapsulate the content of the data set; to ensure this, data were systematically reviewed and refined, and the themes were redefined. Finally, the themes were named in order to reflect the content in each theme. The analysis of the data resulted in the following three themes: (1) Agency – to act or to consume? (2) Arena – opportunities or risks? and (3) Adult responsibility – proactive or reactive? Each theme is stated as a question with two suggested answers and with each answer representing the different views of teachers and parents. When presenting the results, excerpts (citations) from the data were selected from the transcripts in order to highlight thoughts and expressions from the participants with regard to the specific theme. In order to maintain confidentiality, no names or identifying information will be given in relation to the different citations.
Findings: Teachers’ and parents’ views Agency – To act or to consume? The teachers mainly described pupils as the Internet actors (e.g. bloggers, chatting, contact seeking and socializing). In many ways, the Internet is considered a tool for shaping and negotiating identities. The teachers gave several examples of how pupils act – or interact – on the Internet. In the interviews, the pupils were described as ‘a bit isolated in real life’ and the great importance that the Internet has played in their life was emphasized. Some teachers spoke of pupils who use the Internet as their one and only contact network. Other teachers experienced a difference in the Internet usage between male and female pupils. They spoke in terms of girls being more ‘contact and relation seeking’, whilst boys more often used the Internet for ‘checking results and facts’. One interview revealed that: . . . they manage to find boyfriends and girlfriends all over Sweden – via Facebook for instance. (Teacher interview 2)
Listening to the voices of the parents provides us another part of the picture of young people’s Internet use. Whilst they described that their sons or daughters use the Internet very frequently and for a range of activities, they also described the participation as more passive in the sense that they consume what’s available on the Internet, but don’t add very much to the media. Information seeking seems to be the most frequent activity, but parents are also aware of the adolescent’s use of different social interactive forums, for example, Facebook. One girl was described by her mother as using the Internet for various activities, for example, seeking information, Facebook, blogging, looking up family history, music and photo editing. This girl also seemed much more active than the other pupils in the study in her use of the Internet by making contact with people, being active in different interest groups and blogging about her own activities. She also extended her online contacts to be offline contacts by initiating that meetings take place outside the Internet. However, this mother, as well as the other parents, does not have the perception that her children are selfdisclosing on the Internet. Although Facebook is used for keeping contact with relatives and friends, it’s mostly used for following others without posting any, or very little, information about oneself. According to one interview,
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She [the daughter] doesn’t write very much herself on Facebook status and so, she mostly follows others. (Parent interview 1)
According to the parents, their sons and daughters never share their feelings and thoughts with others. Communication and interaction, if it exists, is all about simple greetings or statements about one’s actions. This perception contributes to the lack of concern that parents express about their children’s Internet use.
Arena – Opportunities or risks? When teachers reflected upon the Internet and its participative opportunities, they primarily stressed topics of risks and dilemmas. On the one hand, they could see great openings in different kinds of arenas where the Internet plays an important role, but on the other hand, there was an obvious anxiety about pupils getting into troubling and dangerous situations. Several teachers pointed out examples of how pupils’ ‘naivety creates problems’ (Teacher interview 2), as they often do not see the consequences of their actions themselves. This naivety is often linked to the way in which pupils choose to present themselves on the Internet and in social media. As stated in one interview: They probably use the Internet like everyone else, but it is much more naive [ . . . ] people in the nearest surroundings are well aware of you attending the special programme school, but through Internet contacts outwards you can relinquish from that role – being like everyone else, and it creates a completely different identity [ . . . ] my experience is that girls often meet boys and are being used – but then they talk and chat with class mates far and wide: ‘you know, I met a guy the other weekend in this or that town . . . ’. (Teacher interview 2)
Notably, from the teachers’ interviews, there is another perception emphasizing the opposite approach of how young people might get themselves into problematic situations. Some pupils are considered being too cautious in contact-seeking activities on the Internet. This limits their opportunities to participate and develop social relations in everyday life, according to the teachers’ opinions: But, I’m also aware of those who . . . especially thinking of one guy who really . . . No, this is too dangerous! . . . and you can somehow hear the adult arguments . . . that one should not meet anyone, it’s too dangerous and adventurous. He would never cross that boundary. (Teacher interview 1)
The teachers’ views could be summarized with a statement from one of the informants, ‘the pendulum strikes higher in both directions’ (Teacher interview 1). The Internet has for some pupils contributed to a very positive development and participation. For others, acting on the Internet has resulted in tragic or unwanted consequences, such as being humbled for clumsy statements or experiences of being forced into unwanted sex. The parents were in general very positive about the Internet as an arena with great opportunities for their children’s everyday lives. However, face-to-face interaction is valued more highly by parents than by teachers. Several parents in this study saw the Internet as an alternative arena, in absence of others, where their children can maintain and create new social bonds for the future, ‘ . . . I think we have to push him so he goes even further with using the Internet and make new friends’ (Parent interview 2).
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Parents did not see the Internet as an appropriate place where their adolescents should try out different aspects of their identity and use more favourable self-presentations. They stated that their children do not have any need for alternative self-presentations and, furthermore, that their selfpresentations do not vary according to an arena. Even if parents in general are positive about the Internet as a social arena, they highlight some aspects of the Internet that are more difficult to handle for the children due to their intellectual disability. It is hard for young people to predict the result of their actions and to detect what is true and what are other people’s intentions. In one way, the written word makes it harder to understand due to the lack of facial expressions and body language, but on the other hand, it gives young people more time to reflect and think before responding (if not using chat). Parents also fear that their children will not trust people in their surroundings, for example, friends at school and, for example, recommendations to visit different web pages. On the other hand, they generally stick to what and whom they know and are not too keen to experiment, for example, visiting pornography or trying social media, as shown in the following interview: He refuses to use Facebook because in the school they have talked about how many people get hurt and become sad. So then he thinks that, no, it’s only stupid. More or less, like everyone only hurts each other on Facebook – it’s either Black or White, he thinks. (Parent interview 2)
This resistance about trying new things makes the parents calm, although they realize that put in a specific situation, their children could be hurt because they are naive and do not fully understand the nature of the Internet. For example, parents feel that the teenagers need to be reminded of the veracity of the information displayed on web pages and different social media sites. Another complication is the technology. Most adolescents and young adults manage the basics of the Internet use and more, but they do need help in understanding the nature of new apps, pages and other technology on the Internet according to their parents. Parents fear that when more and more elements of society are moved to the Internet (e.g. 24/7 society), the difficulties these young people have with the technology will in the future result in less participation in society in general. Situations and roles that they are able to fulfil today in traditional ways will be hard to handle in a 24/7 digital society due to the technical skills that are required. One interview revealed that: . . . if the Internet is not developed in a way that it will be easier to handle, persons with intellectual disabilities will have a harder time taking part in society. When more things move over [from society to the Internet] / . . . / I think that other people pick up and use the technology much quicker, but she needs more time to pick up and be apart / . . . / I mean when society gets more and more Internet-oriented, it will be more disabling for them [people with intellectual disabilities]. (Parent interview 1)
Adult responsibility – Proactive or reactive? Teachers report being both proactive and reactive in handling problems following ‘naive and inappropriate behaviour’ (Teacher interview 2) on the Internet. It is stressed that the teachers on one hand often train, inform and discuss ‘how to behave and write on the Internet – and what possible consequences might result’ (Teacher interview 2). One teacher gave the (proactive) example of showing the pupils ‘what kind of information Google had on them’ (Teacher interview 2). Several examples from the teachers are connected to classroom situations where different kinds of Internet-related conflicts needed to be sorted out and managed in order to go on with the planned teaching. In addition, the teachers experienced that the pupils often wanted them to talk to their
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parents when something went wrong ‘because they get scared’ (Teacher interview 2). However, there was a discussion between the teachers in one focus group concerning which status adults had among the pupils when ‘comparing their friend lists on Facebook’ (Teacher interview 1). Some argued that it was connected to a high status to have adults/staff in their friend list, whilst others considered it to be dorky and shameful. The teachers thought this topic was related to the pupil’s level of disability by saying: . . . I think many pupils would like to be friends with the teacher, but they don’t want to show it to others – once more – it is this double life again . . . . (Teacher interview 2)
Another topic that involved the teachers’ assumption of responsibility and the opportunities of working proactively or reactively was related to their peer staff’s general views on the Internet and social media. Both teacher groups had common experiences of anti-Facebook/anti-Internet colleagues, which made it more difficult to develop and work with questions of responsibility and the understanding of pupils’ learning and participation. One of the teachers claimed that teachers cannot be that ‘old fashioned’ (Teacher interview 1) when it comes to new strategies for learning, and in order to meet the pupils, the pedagogues need knowledge. As explained in one interview: We have started a new Facebook site which does not have any designation as ‘special or special need,’ but just ‘Year two, X-town upper secondary school’. The youngsters liked that. Unfortunately we have many anti-Facebook, anti-Internet colleagues in my group. Therefore, I have started my own ‘professional’ Facebook site – because my private Facebook has nothing to do with this. [ . . . ] If you don’t see the possibilities you can’t integrate topics in education training. (Teacher interview 1)
The parents are in a sense both active in promoting their children’s Internet activity, but in the same way, they argue that they do not feel the need to know what the adolescent does on the Internet. ‘He never shuts the door behind him, maybe sometimes to the living room so he doesn’t disturb, but it is not because he is on some ‘‘black-pages’’ or so’ (Parent interview 1). Parental monitoring in relation to the Internet use seems to be mainly about helping with more advanced or new technology (e.g., new apps and paying bills) and encouraging the children to use different aspects of the Internet. The latter is done both directly with suggestions about different activities and indirectly by discussing different things with their children that he or she may later look up on the Internet. Parents’ lack of interest about what and who their children are in contact with on the Internet is not about paying attention to their children, it is more about not being worried about their whereabouts on the Internet. The reason is partly because they do not think the adolescents are interested in content that could be considered suspicious. Furthermore, their children frequently tell them about the content they read on the Internet, just as they share information about other things that happen or that they come into contact with. The parents use these sharing of information situations to have discussions about what is on the Internet. I: Are you worried when your daughter uses Internet? M: No, never. Internet is what she likes and what she is good at. She doesn’t have any other interests. // . . . she is not very secret about her whereabouts, she tells me a lot about things she reads or for example about this Facebook friend she had. He started to be very, insulting about sex and that kind of things. But then she deleted him right away and sad that she was not interesting having him as a friend. (Parent interview 3)
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They do not think the children always understand what they come into contact with and the accuracy of that content. However, although the parents do have discussions with their children, they think that this is partly an assignment for school, especially the more sensitive and intimate parts (e.g. relations and sexuality on the Internet). In addition, parents think positively about their adolescents having relations and exploring their sexuality on the Internet, but with adult guidance, primarily from the school: It’s easier for them to talk about these things at schools. It’s easier for them [adolescents] to hear it from the school. (Parent interview 2) I think so too. It’s harder for us parents/ . . . / they [teachers] have other skills for how to talk with children. (Parent interview 2)
However, parents’ views are double-edged; on the one hand, they see great possibilities for their children and the Internet due to their specific disability, but on the other hand, they are afraid that due to their disability, their adolescents are more sensitive to different contents and interactions on the Internet. Parental action in relation to adolescent and young adult Internet use is very coloured by these feelings; they both want to encourage more Internet use and simultaneously encourage more time for face-to-face interactions. The challenge is to find a balance. . . . I don’t think my son should sit and look at the Internet for how things should be and how to find himself – he needs to experience things, be part of it, to explore himself / . . . / in the moment and not by the computer. (Parent interview 2) . . . But it is a positive thing if he [the son] can search the Internet and gain more knowledge about a specific disability and maybe find other peer group mates / . . . / find out that he is not alone. (Parent interview 2)
Discussion The findings show both similarities and differences in teachers’ and parents’ views on how pupils with intellectual disabilities use the Internet and social media. The teachers seem to emphasize to a higher extent pupils’ use of the Internet for interactive purposes. The teachers report experiences of pupils’ activities on the Internet and with social media that can lead to problematic or unwanted situations. On the other hand, the Internet is viewed as a provider of great opportunities for participation and access to a wider society. Furthermore, the parents did not show any great anxiety that their adolescents’ and young adults’ Internet usage would lead them into troubled contexts. This is an interesting change compared to earlier research (Lo¨fgren-Ma˚rtenson, 2008). The technology of the Internet seems to have developed to be a more integrating part of the community as a whole during the last 10 to 15 years. Some parents are a bit worried, but they claim that the Internet possibilities outweigh the disadvantages. There were some notable common features between the teachers and parents interviewed. Both informant groups pointed out that pupils mentioning of the type of disability or a special programme belonging did not occur in the adolescents’ self-presentations (Lo¨fgren-Ma˚rtenson, 2008). Also worth noting was the parents’ apprehension that the adolescent did not have any need for alternative self-presentations. In this sense, the parents had expectations that the Internet could be a tool for gaining more awareness of one’s own disability – and as an extension – meet other
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peer group friends. Parents expressed the view that Internet guidance was a school responsibility both when it comes to exploring sexuality and gaining more disability awareness. The findings illustrate complex prerequisites that the nearest adult environment have to handle when supporting young people using the Internet and social media. It is about technical, moral and – as shown above – identification issues. Jenkins (2008) claimed a theoretical position in which the concept of identification – in contrast to the more static and essentialist concept of identity – should be understood as an ongoing and evolving process. In this kind of process, people often try to find some kind of compliance between self-definitions and the surrounding’s definitions of the individual. Deaux and Ethier (1998: 301) asserted that social identities concern those constructions of self that relate the person to a collective or a category. This social identity work always exists within the scope of a continuous process of negotiation and renegotiation. Thus, the teachers and parents play important and decisive roles in this complex process. As the findings show, there were similarities between teachers’ and parents’ ways of conducting themselves regarding questions of adult responsibility. Both informant groups claimed their ambition to be both proactive and reactive in their efforts to support adolescents and young adults in different kinds of Internet activities. This was seen especially with the teachers who – as a consequence of pupils’ behaviour on the Internet – often discussed strategies of making the pupils more aware of the implications of being too naive with social media, for instance. However, teachers expressed difficulties in this kind of proactive and/or reactive work since many colleagues had an ‘old fashioned and anti-Facebook/Internet-approach’. Consequently, this naivety would be understood in relation to the levels of support and education available for young people with intellectual disabilities regarding Internet access. The present findings shed light on the paradoxical development of the Internet – creating conditions for both more and less participation in society for young people with intellectual disabilities. Teachers’ and parents’ perspectives on the Internet and social media usage are important since it is imperative to show how support can be arranged and handled for young people with intellectual disabilities. Recent research has shown that family members are often the primary supports for technology use (Palmer et al., 2012). In this process, there is both a risk and an opportunity that other aspects of the discussion will come into the foreground – for example, vulnerability. In addition, as Chadwick et al. (2013: 391) pointed out: Issues of safety, risk and protection online for people with ID have yet to be adequately investigated and these currently serve as reasons given for hindering people from gaining online access.
This implicates a need for more knowledge towards how young people with intellectual disabilities present themselves on the Internet.
Conclusion From this study, we have learned that the immediate adult environment host feelings and thoughts that most likely play an important role when supporting young people with intellectual disabilities in their usage of the Internet and social media. The analysis shows that the informants are ready to look beyond problematic situations in order to catch opportunities to develop and maintain social relations. Therefore, future research in forthcoming phases of the project should focus on how young people with intellectual disabilities experience and handle other people’s views on how they use the Internet. Other topics of interest would be characteristics of self-presentations, together
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Journal of Intellectual Disabilities 19(1)
with similarities and differences in how girls and boys with intellectual disabilities use the Internet and social media. Consequently, there is a need for further theory development concerning the significance of alternative identities and intellectual disabilities. Acknowledgements The authors would like to thank the parents and the teachers for participating in this study.
Funding The study has been funded by internal university financed research time.
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