Conceptual framework

Building on Garland-Thomson’s [31] theory, this article applies four modes of representation, based on how disability is perceived in American public photography, to create a conceptual framework for pinpointing contextual barriers and facilitators to participation among youth with cerebral palsy. As part of this framework, we also consider how gender and disability intersect in shaping experiences of barriers and facilitators to participation. Although norms surrounding disability and gender are often constructed in intertwined ways—shaped by overlapping social and cultural processes—they can still be analytically distinguished. In our study, both gender and (dis)ability are understood as socially and culturally (re)constructed concepts. Gender is not understood as a fixed attribute or inherent identity, but rather as an ongoing social process—something one does, not something one is. Gender is enacted through everyday interactions and shaped by social norms, expectations, and institutional contexts. It is relational to biological sex but varies across time and space, making it a dynamic and context-dependent construct [32]. Similarly, notions of ability—and of the “non-disabled”—are continuously renegotiated and shaped by context [32].

Garland-Thomson [12] describes disability as a construct within a system of exclusion that stigmatizes human differences. She identifies how disability is commonly depicted, which we found useful also in the context of physical activity for youth who have cerebral palsy in Sweden: The four modes are the exotic, the wondrous, the sentimental, and the realistic modes [31]. They reflect a history of disabled people being on display, mirroring the contexts in which they live. The comparison of bodies legitimizes the unequal distribution of status, resources, and power in the social and built environment.

The first mode, the exotic, makes disability distant and strange, emphasizing sensationalism and objectification without involving the viewer. It does not invoke astonishment or pity, but rather alienation and contrast from the viewer. The second mode is the wondrous, which highlights supposedly amazing achievements to create admiration and astonishment. Even simple activities, like eating, may be seen through the wondrous mode, portraying the disabled person as courageous and overcoming disability. This mode emphasizes the distinction between the viewer and the person considered disabled. The third mode is the sentimental, which places the disabled person in a diminished position, as helpless, suffering, and evoking pity. This mode infantilizes the disabled person, constructing someone who needs care, thereby strengthening the viewer’s sense of progress and power. Finally, the fourth mode is the realistic, which minimizes the difference between the viewer and the disabled person. In this mode, the viewer is supposed to identify with the disabled person, regardless of the impairment. Realism does not depict reality but rather an illusion of it, constructed like the other modes [31].

Participants

The data originates from thirteen participants, all born and raised in Sweden: five identified as girls and eight as boys. Participants’ physical abilities varied widely—from very limited movement, requiring help to steer an electric wheelchair, to only minor difficulties, such as a slight limp or slower running speed. Most participants had experiences from both integrated physical education classes and classes adapted specifically for pupils with physical impairments. The participants all described present or previous participation in physiotherapy, which, while not specifically included in the current paper, may be intertwined with physical leisure activities, and sometimes even with physical education. All participants engaged to some degree in physical leisure activity, though few were currently participating in organized sports. All participants were in school and had participated in physical education, but some did not have physical education in their educational program schedule at the time of the interviews. Inclusion criteria were: being 15–18 years of age, having a diagnosis of cerebral palsy and being capable of providing informed consent to participate in research. Moreover, while not an explicit criterion, the use of language or communication techniques not familiar to the interviewer or requiring training, was discussed with the recruiting care providers as a potential risk of misinterpretation of the participants. None of the volunteering youths that were referred to us were excluded. To recruit participants, the first author contacted child rehabilitation units in 20 out of the 21 Swedish health care regions. Physiotherapists, or other health care providers, provided names and phone numbers of interested youth. Next, the participants were contacted with a text message and/or phone call, offering more information about the study and scheduling of the interview. The participants received verbal and written information, in plain language, about the study and their right to decline or terminate participation at any time. They all consented to participation in the research study, either by signing the consent form or by consenting verbally in the recording before the start of the interviews. The confidentiality of data and the participant’s rights were repeatedly emphasized during correspondence and interviews.

Data collection

Data collection was performed between June 20, 2021, to February 16, 2024. The interviews were performed individually, either digitally through Zoom (n = 6) or face-to-face (n = 7) in a silent place chosen by the participants in discussion with the first author (the interviewer), for example the child rehabilitation unit or participant’s home. One participant chose to include a school assistant in the interview situation, for practical and communication support. The semi-structured interviews were performed, recorded, and transcribed by the first author, and lasted for an average of 46 (22–94) minutes. Two participants showed signs of tiredness toward the end of the interviews but chose to continue until the interviews were completed, when asked. The interviews included questions regarding the participants’ experiences of participation (or non-participation) in physical leisure activity and physical education in school. These terms were not specifically defined but rather the participants were allowed to describe their views and experiences. Examples of the interview questions were: ‘Do you have any examples of when physical education/leisure activity worked out well/not as well?’ or ‘were there anyone (else) in your class/team who seemed to struggle to participate?’. Questions and answers were followed by additional questions when appropriate, such as ‘How did you feel in that situation?’, ‘why do you think they did that?’ Open- as well as closed ended questions were used to facilitate communication as open questions at times may be perceived challenging [36]. The participants were allowed to elaborate outside the interview guide. Moreover, participants were asked for explicit experiences of norms or expectations on how to be and how to perform, where gender, ethnicity/skin colour, and function were understood to be the basis of such expectations. However, only norms related to gender and function were visible in the data.

The first author has several years of experience as a physiotherapist within child- and youth rehabilitation, and of interviewing children, youth and adults as patients, as well as some experience with research interviews. This experience was thought to facilitate the interviews. The current interview guide was tested before the study, with members of a reference group consisting of young adults who have cerebral palsy, physiotherapists within child rehabilitation, and the authors, both during construction and in a staged interview-session. The participants of the current study were aware of the interviewer’s background.

Data analysis

Qualitative content analysis, according to Graneheim and Lundman [33], was used, aided by the data analysis program MaxQDA [37]. This methodology provides a systematic as well as flexible framework to analyse data, allowing latent interpretation meanwhile staying close to data (the participants’ narratives). Transcribed interviews were read repeatedly. Next, the text was divided into meaning units, which were condensed and given a code, keeping the context in consideration. Codes were compared and grouped together for groups to form categories and ultimately interpreted into a theme [33] (Table 1).

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Table 1. Example of the analysis process.

https://doi.org/10.1371/journal.pone.0346578.t001

Trustworthiness of analysis was sought through repeated discussions between first and second authors about codes and code groupings. Discrepancies in the coding procedure that occurred during analysis and between the authors were aligned through re-coding when considered appropriate. How well categories covered data and similarities and differences between categories, were repeatedly discussed between authors, and regrouping of content and renaming of categories were made when considered necessary in order for categories to become pertinent to data. This was followed by triangulation where joint reading of selected interviews by the last two authors to verify the analysis. When there were discrepancies between the co-authors regarding how categories were organized and separated, revisions were made until consensus was reached. Both manifest and latent content were analysed [38].

Category 1. Excluded and denied of support

Within this category, participants described situations with exclusion, where they experienced very limited power to act or resist. The participants’ experiences involved exposure to discrimination through different processes of explicit or implicit exclusion, because of how they looked or functioned, and through other people's acts of care, which in certain situations were perceived as diminishing.

Exclusionary barriers—discussion category 1

In the first category, Excluded and denied of support, social barriers leading to explicit or implicit exclusion were observed, such as not being asked to join the class team, being met with silence and disregard, or through seemingly considerate actions. These situations, particularly in physical education, were linked to a lack of teacher engagement and cooperation, aligning with qualitative findings by Shields and Synnot [21]. Such school exclusion can be compared to discrimination. A Swedish study by Ring et al. [39] also describes limited feelings of belonging and opportunity to contribute as barriers to physical education for youth with impairments.

When participants encountered discriminatory behaviours, it created distance and a lack of connection with other teenagers or adults. This aligns with Garland-Thomson [31], who found that disabled individuals are socially constructed as ‘different’ and viewed through the exotic mode, as a bit ‘freakish.’ Participants also described receiving excessive praise for simple tasks and good grades in physical education despite minimal teacher involvement. Garland-Thomson [31] termed this the wondrous mode, where accomplishments are ranked by different standards than those for individuals perceived non-disabled. Participants did not actively resist these patronizing behaviours, possibly because the compliments (merited or not) made them harder to critique, as noted by Wang et al. [40]. Unequal power relations between teenagers and adults, and between participants and non-disabled peers, is another interpretation [41]. While exclusion through caring was seen as a moderate form of exclusion, by the participants, it still limited the participants’ agency.

Category 2: Resisting prejudice and discrimination

The second category includes ways of speaking or reasoning among the participants concerning physical activity that comprised exclusion or discomfort, similar to the first category. However, this category allows room for struggle to resist, challenge, or sometimes defend exclusionary practices, to seek one’s place, rather than the powerlessness expressed in the previous category, Expectations from others as well as themselves were negotiated for acceptance.

Struggle to resist or conform to barriers—discussion category 2

In the second category, “Resisting prejudice and discrimination”, participants struggled to resist or conform to barriers and norms, feeling somewhat more empowered than in the first category, yet still excluded in many ways. Despite insufficient support or adaptations, several participants defended teachers or others providing support, taking responsibility for inadequate participation upon themselves, as if not allowed to expect full inclusion. This responsibility often included shame, as noted by Jóhannsdóttir et al. [42], and sometimes led to self-exclusion, similar to findings by Haegele and Sutherland [18].

The current study, like Asbjørnslett et al. [43], shows that disabled youth want to be seen as ‘ordinary’ but recognize that inclusion requires hard work and that expectations differ for them compared to peers not seen as disabled. Not adhering to health discourses valuing certain bodies and behaviours can create guilt and shame, as experienced by youth in general [44]. When the body differs from both the ideal and what is considered ‘normal’, these ideals become even more unattainable, leading to internalized prejudice.

During childhood, several participants experienced not being listened to by adults, as also reported by youth with cerebral palsy in a study by Wintels et al. [45]. They were expected to need care due to being both children and disabled, limiting their perceived participation. Garland-Thomson [31] identified this infantilizing treatment as the sentimental mode, where individuals are seen as needing care. Meanwhile, Jahnsen et al. [7] found that learning personal responsibility for health in childhood strongly predicts regular physical activity in adulthood, which requires support and participation in decisions.

Participants’ resistance to being labelled as disabled highlighted their struggle with norms and expectations. Their unwillingness to stand out reflects the stigma of having a different function and the effort to conform to bodily and behavioural expectations. Another way they minimized their otherness was by comparing themselves to those considered more disabled, in accordance with results reported by Wickman [46] and van Amsterdam et al. [47]. This positioning of others as deviant reproduced ableism, aligning with Garland-Thomson's [31] exotic mode.

Exclusionary practices regarding girls’ non-participation in physical education were described, but none of the participants saw themselves as ‘one of those girls’. While one participant noted boys’ privilege in physical education due to their involvement in team sports during leisure time, most did not question girls’ limited participation, or consider which pupils physical education was designed to include. Some even suggested that girls’ non-participation was due to comfort or laziness. Thus, boys and masculinity dominated physical education and sports, while traits considered feminine were subordinate, which, as noted in previous studies [48,49], remained largely unquestioned.

Category 3: Empowerment and support

The third category represents situations and environments in which participants described themselves as content with their physical education and leisure activity, even if sometimes preceded by a compromise, and where they were in power to influence their participation. All participants described such situations to different degrees and in different ways.

Several participants had found individual physical activities, such as horseback riding, biking, or running that worked out well for them. By adapting to norms and physical prerequisites, and by choosing activities less team-based and thereby less socially demanding, they did not need to struggle as much as was described in previous categories. Challenging normative expectations as to their limited physicality in these settings did not seem to invoke ambivalence or guilt but rather represented an active choice and a matured self-assurance.

… just the fact that I dared to try new exercises [at the gym], and dared to pressure myself, I was like – shit, I’m strong! – I would never have done that five years ago. Participant 3, 17 years)

The above quote also described a sense of power that came with growing up, mentioned by several participants, that entailed confidence. Participants also voiced that growing up had given them an internal motivation propelled by a greater understanding of what positive effects physical activity could confer to them. The insights of benefits from physical activity also made participants appreciate the guidance and support they were provided, for example from physical education teachers or physiotherapists. The level of support received was described as an important part of being in charge of one’s situation and experiencing empowerment. Hence, support was desirable when in accordance with their own wishes and needs, and particularly for being part of the group. During physical education, this support seemed particularly important, and one participant described what he regarded successful inclusion through active participation in physical education planning:

So we sat there, planning together, for…eh, what would be possible to perform…/…and he [the physical education teacher] said like “here and here we’ll be skiing and skating so I suggest this activity for you instead—how do you think that will work out?” “yes, I think that’ll be fine”…Just something like that, really helps a lot. (Participant 7, 16 years)

It emerged from the interviews that being able to participate in social interaction with the class was important. One participant experienced inclusion when he got to oversee the secretariat during physical education, when the class was doing sports that he could not participate in.

I couldn’t play so I got to be the team coach in my class and such, I got to be the referee. I was not excluded but was just as included as the rest who were playing…/…that was nice. (Participant 1, 16 years)

In opposition to the experience of participant 1, another participant experienced the same type of assignment as degrading as he wanted to work with his body. Such discrepancies emphasized the importance of including the youth in planning the activities. Another positive example of inclusive activities was free-for-all ball games where different strategies could be used to succeed. One participant used kneepads, aimed to protect his knees if he fell, to avoid being hit by the ball.

I remember, I used them to my advantage in Killer-ball in middle school, and it was so much fun to run, as I recall, so when someone threw the ball, I just threw myself to the floor, but I had the kneepads, so it didn’t matter. (Participant 2, 17 years)

In a similar game, another participant described appreciating the fact that her peers were not being overly considerate toward her, as that made her feel included on equal terms. Moreover, recognizing oneself in others was mentioned as important for self-esteem, and participants who had at some time participated in physical education classes particularly designed for youth with physical impairments, described them as inclusive, yet adequately challenging.