1. Introduction
Participation is associated with power, and one of the most uncritical and common ways to ‘create’ participation for disabled people is to invite to decision-making processes. However, for participation to be facilitated in a way that is not alienating, social structures are required that value different perspectives. To understand participation, it is vital to explore the effects of participatory processes, as opposed to the professed intention of people in stronger power positions than those of disabled people (Gallagher 2008; Radermacher et al. 2010).
Social support services staff are essential in facilitating disabled people’s participation and citizenship (Bahner 2016; Bredewold et al. 2020) in the way they talk about participation and disability. This is because participation means different things in different contexts (Hultman et al. 2019). For example, in daily activity services, participation is related to building social relationships and meaningful activities (Svanelöv et al. 2019), while in disability sports, participation is discussed in terms of forming identities and helping people to be who they want to be (Svanelöv et al. 2020).
An ostensible aim of fostering participation is to encourage and facilitate involvement in domains and activities over which people have limited control or influence. Often, the initiation of participation is asymmetrical. Those on one side possess stronger power and control whereas those on the other have limited opportunities to express their interests; thus they are excluded from decision-making processes or their knowledge is neglected (Cooke and Kothari 2002; Kothari 2002).
Asymmetrical participation for disabled people is seen in several daily life areas, such as accommodation, daily activity services and sports activities (Svanelöv 2021). In these life areas, daily social support is vital for disabled people’s opportunities to have their views solicited and to participate (NIN 2019). Even so, efforts to facilitate and increase disabled people’s participation often stem from a generalised view of intellectual disability (ID) as a homogenous category without individual needs (Taneja-Johansson 2021).
The most pejorative labels in society are those that downgrade and stigmatise individual functionality. ID is such a label, implying norm-breaking functionality; Erevelles and Minear (2010) argue that people ascribed ID labels are constructed as ‘non-citizens and (no)bodies by the very social institutions […] that are designed to protect […] and empower them’ (para. 4). Because they are constructs of language, such labels have implications for the people they denote, and Svanelöv (2021) argues that the precedence for decisions on disabled people’s participation often lies in the advantaged position of other people associated with normative functionality. Thus, decision-making about disabled people is affected by the way in which disability is talked about within different situations and places that accommodate discourses of ‘us versus them’ (Burch 2021), such as disability sports and regular sports.
Language, words and utterances carry meaning, force and power; this has implications for those involved in such language-based interactions. Utterances are more than a medium for social interaction; they do something with the interlocutors (Potter and Wetherell 1987), and discourses about disability and participation is embedded in and sustained by power structures that construct differentiation and inequality. How participation is talked about for disabled people maintains and reproduces societal differentiation and pejorative categorisations in a concrete manner (Taylor 2015), even as it can facilitate independence and self-determination. It is in talk – and more specifically, the action of talk – that ableism and its practices to elevate the normative functional individual can be eliminated; it is here that individuals’ values and abilities can be recognised (Liddiard 2017).
The way in which participation and ID are talked about says something about the reproduction and maintenance of norms (Potter and Wetherell 1987), as well as how they affect individuals’ lives and right to social justice. In such talk, there are distinct ways of providing meaning to different words, including by using such terms or phrases as ‘normal’ or ‘able-minded’, that determine precedence in the context of social justice (Börjesson 2003).
For people viewed as deviating from able-minded norms, the right to participation can be a struggle to be(come) eligible citizens (Taylor 2015) and being who one wants to be – for example an athlete rather than a disabled athlete (Svanelöv et al. 2020). This is because disabled people are often socially excluded (McConkey et al. 2021), and may inhabit subordinate power positions: thus, depend on others’ support and decision making in their everyday lives.
This research is part of a larger project in which previous studies have involved interviewing disabled people about their experiences of participation in social services and disability sports. It is of relevance to explore staff’s and leaders’ perspectives as well; therefore, the aim of this study is to explore the talk about participation and ID among social support staff and disability sports leaders. The study addresses the following questions: (1) Which discourses are (re)constructed? (2) What rhetoric is used in describing participation and ID?
2. Previous Research
2.1 Participation and social support services
Social support services staff have an influential or even controlling role in providing support for increased independence and participation for disabled people (Bahner 2016). Often, the objective is to initiate and facilitate social change for people in exposed, marginalised, excluded or sensitive situations. Since social support staff represent a large portion of the social networks of disabled people, these staff often define conditions for participation (Bredewold et al. 2020).
Social support needs assessment should be based on the individual’s needs, but it is also based on the legislation, practice and policy construction of what is considered normal (Hultman et al. 2019). In social support services, participation is institutionally structured, and it is ‘used’ to guide residents to a ‘good’ life – that is, what is viewed as a ‘normal’ life (Svanelöv 2020). Here, practices that facilitate participation can venerate and promote citizenship’s ideal values (Goodley 2014). According to Aspis (2002), power resides within social support service staff’s authoritarian position, such as in group homes and daily activity services, and disabled people’s processes for self-advocacy and participation often depend on staff’s willingness to overlook rules or policies. That said, not only can institutionalised frames of social support, such as implementation plans for disabled people, provide a secure daily living, but they can also limit involvement in decision-making processes by restricting participation to activities at predetermined places and times (Aspis 2002; Svanelöv 2020). This means that power is embedded in social interaction, but it is hard to see for those who exhibit it.
2.2 Participation in sports and leisure activities
Participation in recreational leisure and sports activities is discursively represented as a discrepancy between mainstream sports and disability sports (UN 2006). In this sense, disability is the ‘other’ sport rather than an integral part of sports as a whole. Sport is a leisure activity that disabled people have limited access to and possibilities to practice. Its benefits include improved physical, mental and emotional health, increased social networks and heightened self-esteem, but despite these benefits, it is rarely promoted or practiced by social support service staff (McConkey 2016; McConkey et al. 2021). Sépulchre (2022) argues that disability rights often lack full recognition and implementation because of social and monetary attitudes; people may ask why society should guarantee the rights of disabled people and what society gains by using its funds to provide social justice.
Sports and leisure activities targeting people diagnosed with ID are distinguished theoretically and separated physically from ‘normal’ sports and leisure activities (Svanelöv et al. 2020); for example, Jeanes et al. (2019) discuss how normative judgements marginalise people who fall short of able-minded norms and hinder their sports participation. This means that rights to participate in sports can be obstructed because of disabling barriers of normative functionality (Svanelöv et al. 2020).
The involvement and engagement of leaders and policy actors in sports, as well as their distance from an ableist ethos, are important for preserving disabled people’s right to participation and belonging in sports and leisure activities. Ableism reproduces normative functionality as superior, and if it is not dismantled, ID will always be constructed as a diminished state of being human (Brittain et al. 2020; Campbell 2001).
2.3 (Dis)able-minded labelling
Able-minded norms steer the social and medical support needs assessments, these are often defined by medicalised models of disability, in which individuals are judged and categorised as disabled or impaired. Labels of ID are often imposed or enforced rather than chosen. Therefore, they are socially and culturally divisive (Svanelöv 2021), and they come with a marginalised position in society. Disabled people are pressed to validate their belonging and credibility in relation to different identities in a society built upon normative structures of ableism and functionality (Goodley et al. 2021).
If someone deviates from normative functionality and ascribed and attributed specific (dis)abilities, this can manifest as truths and instil fear of what is perceived as different. According to Schalk (2018), oppression created by (dis)able-minded labelling can lead to a compelled compliance with social support services. To be sure, social support services targeting people diagnosed with ID exhibit institutional characteristics (Svanelöv 2020) and can exercise pastoral power. However, pastoral power is also about control and discipline, with predetermined ideas of a ‘good life’ (Foucault 2007); ID as a diagnosis, label, stigma or form of oppression creates opportunities for participation in certain contexts or precludes participation in other contexts (Taylor 2015). Intertwined with able-minded judgement, participation is based on ideas of intelligence, sanity, social awareness and control that combine to constitute a particular way of being (Schalk 2018; Taylor 2015).
Rights and opportunities for participation in day-to-day interaction are crucial for any person. This is especially true for disabled people, who exist in a social position of deviance in relation to prevailing standards of functionality (Friedman 2018). The NIN comprises individuals receiving social support services targeting disabled people. In its Charter for Involvement, the NIN (2019) claims: ‘We must be at the heart of any plans about our lives’ (10) and ‘the people that support us should always listen to us and respect us’ (24). This illustrates that disabled people are not always at the heart of their lives, listened to or respected, and this issue must be addressed.
3. Theoretical Perspective
The notion of disability presupposes a comparison with or judgement of ability, and ‘disabled people are known in relation to able-bodied/minded people’ (Goodley et al. 2019, 15). Such comparisons or judgements presuppose the existence of actual – innate or acquired – dissimilarities and similarities between people. These judgements are the basis for social categorisations, and they often fuel prejudices towards people viewed as different, with a wide range of consequences. All language and utterances have meaning and power; thus, merely speaking does something in the world. For example, the words ‘participation’, ‘intellectual disability’ and ‘able-mindedness’ have different implications and consequences in different situations (Billig 1997; Potter and Wetherell 1987).
Able-mindedness denotes a social categorisation process that labels some individuals as disabled through practices of normalisation. Notions of able-mindedness comprise pejorative attitudes towards bodies inconsistent with normative ideals and categorise cognitive or intellectual abilities based on normative functionality; thus, they operate against people who are regarded as not possessing these abilities (Svanelöv et al. 2020).
Able-mindedness is based on hegemonic power, and it entails normalising practices and assumptions that label people as deviant or different because of their intellectual or cognitive abilities (Schalk 2018). Able-mindedness oppresses, devalues and depowers language and its actions, and it objectifies disabled people (Foucault 1993) in favour of ableistic rhetoric (Campbell 2001) and subjective functionality. This is exercised via pastoral power that, according to Foucault (2007), is fundamentally beneficent, with the objective of ‘the salvation of the flock’ (126). However, pastoral power is also totalitarian in its control over and care for the individual, and it legitimises the authorities’ right to do what is necessary for the presumed good; furthermore, it legitimises able-mindedness as a normalising practice that tells others how to behave. Indeed, able-mindedness is based on ableistic ideals, and it is expressed in disciplinary and oppressive ways.
3.1 Discursive psychology
In social interaction, discourses create and maintain boundaries and provide purpose, access and rejection (Foucault 1993; Potter and Wetherell 1987). Discourses are represented and organised by ‘truths’, which function as discursive frames that stipulate what is or is not acceptable (Foucault 1993). The truths direct and guide, force and oppress subjects into proper ways of conduct (Foucault 1993, 2007), establish power relations and position subjects within discourses (Börjesson 2003). This does not mean that discourses are true representations of reality; rather, it means that we shape our reality through language (Winther Jørgensen and Philips 2000).
Discourses are constituted by language and social practices (visual, oral, auditory and tactile) and expressed through utterances that define ‘truths’ (Billig 1997). Language is embedded in practicalities and what we say and do, and if we are to use words meaningfully, there must be some form of public agreement on those words’ meaning (Billig 2009). The dynamic social practice of language that shapes attitudes, ideals, identities and the social world are not isolated inner entities; rather, they are formed by social and discursive practices. Thus, identities are not fixed and stable but changeable and (re)constructed in and by social interaction (Potter and Wetherell 1987). According to Billig (1997), to talk is to act, and talking comes with social consequences; the way in which utterances are expressed and contextually bound forms language and the construction of discourses.
This study departs from the perspectives of discursive psychology (Edwards and Potter 1992; Potter 1996; Potter and Wetherell 1987), holding that discourses are talk and text that are part of contextual social practices. Individuals form and are formed by discourses through the use of different types of rhetoric that (re)construct our social world, such as connotations, metaphors, anecdotes or terms to establish truths (Potter 1996; Stier and Blomberg 2016). Talk and text are action-oriented (something happens in talk and text), and rhetorical usage varies with social contexts (Winther Jørgensen and Philips 2000). Social practices occur in dynamic and spontaneous social situations and in more institutionalised places (Stier and Blomberg 2016), with different types of rhetoric to (re)construct discourses.
4. Method
This study uses a qualitative research design with data collected through semi-structured and open-ended individual interviews of staff in social support services (daily activity services and group homes) and leaders of sports clubs for people diagnosed with ID. This study was part of a larger project in which research had been conducted at an earlier stage to interview disabled people in group homes, as well as those involved in daily activity services and disability sports, about their experiences of participation. In this study, social support staff and disability sports leaders from the previous studies’ contexts were interviewed in order to explore their experiences of participation. The interview questions revolved around how participation was talked about and how it related to power and disability, for example: ‘Do you think participation is different for people with and without ID?’ The interview guide also had probing questions such as, ‘How?’, ‘In what way?’ and ‘Can you provide an example?’ Ten individuals were interviewed; they were all between 22 and 65 years old, and they had an average of 22 years of work experience in their respective fields. Several interviewees had experience from multiple different social support areas (see Table 1). The interviews lasted between 45 and 90 minutes, and they were conducted in quiet and secluded locations chosen by the participants.
Table 1
Interviewee demographic.
| INTERVIEWEE (PSEUDONYM) | CONTEXT | SEX | WORK EXPERIENCE/EXPERIENCE AS LEADERS |
|---|---|---|---|
| Mio | Group home | Female | 15 years |
| Ella | Group home | Female | 4 years |
| Eivor | Daily activity services | Female | 10 years |
| Rachel | Daily activity services | Female | 20 years |
| Klara | Daily activity services | Female | 33 years |
| Karim | Group homes and daily activity services | Male | 34 years |
| Layla | Group homes and daily activity services | Female | 32 years |
| James | Disability sports | Male | 16 years |
| Randvi | Disability sports | Female | 15 years |
| Amelia | Disability sports | Female | 40 years |
The interviews were design to explore the interviewees’ use of language and rhetorical patterns (Potter and Wetherell 1987). The formulation of the interview questions was guided by Larsson’s (1986) presupposition that individuals interpret language, and in an interview situation, the interviewer cannot know what has been asked until the interviewee’s answer is known. The interviews were ‘conversational encounters’ (Potter and Wetherell 1987, 165), dynamic situations in which the interviewer and interviewee were equally involved in the construction of discourses. This meant that the study’s purpose was addressed back and forth on different topics during the interviews and that the interviewees had an opportunity to help steer the agenda (Winther Jørgensen and Philips 2000). The interviews were conducted in Swedish, and quotations from them were translated into English. The translation could have affected the nuances of the interviewees’ answers. But this possibility was addressed by thoroughly comparing quotations in the native language and English to ensure that the translation of the interviewees’ meaning was valid. This process was assisted by a native English speaker who was also fluent in Swedish.
4.1 Analysis
The study’s data were analysed through a discursive psychology lens (Billig 2009; Edwards and Potter 1992; Potter 1996; Potter and Wetherell 1987). The three following elements were central in the analysis: what interviewees’ talk in specific discursive contexts does to and within social practices, how their talk gives meaning to such phenomena as ID and participation, and how their talk is rhetorically used to (re)construct discourses (Billig 2009; Potter 1996).
The interviews were transcribed verbatim and read and reread thoroughly. After this, an initial coding was undertaken to ‘squeeze an unwieldy body of discourse into manageable chunks’ (Potter and Wetherell 1987, 167). The data were coded to search for patterns of variability and consistency and for differences and similarities, such as interviewees’ changing pronouns (e.g., from ‘us’ to ‘them’) or contradicting themselves (revealing variations in the use of language). How and when the interviewees constructed themselves and others in discourse was also in focus in the analysis. The coding resulted in a categorisation of action-oriented discourses and rhetoric. Table 2 gives an example of the analysis process.
Table 2
example of the analysis.
| INTERVIEW TRANSCRIPT | CODE(S) | THEME |
|---|---|---|
| We do not want anyone to fail or experience a fiasco but sometimes you must let go of your own control issues. […] They have so much that is against them in society, so why should they be exposed to things in our control? We want to protect them. | Overprotecting and sheltering from a perceived threat Taking control of what is considered good | Wrapped in cotton |
The analysis sought to explore what interviewees did with language when interacting, and thus, presenting features of discourses as determinants of action. Furthermore, it sought to study how discourses of participation are constructed and what impact those constructions have. In other words, it asked how participation and ID are talked about, what that talk does to individuals and what the possible consequences of this talk are (Billig 2009; Potter and Wetherell 1987).
4.2 Ethical considerations
This study was approved by the Ethical Board of Uppsala, Sweden (dnr: 2015/391/1), and the research followed the good research practice ethical guidelines and regulations of the Swedish Research Council (2017). Before the interviews were scheduled and before each session commenced, the research participants received oral and written information about the study: they were informed that their participation was voluntary and that they could withdraw at any time. Informed consent was obtained prior to the interviews (CODEX 2019; Swedish Research Council 2017).
5. Results
The results are presented according to the following discursive themes: being different as (ab)normal, the inconvenience of ID, wrapped in cotton and powerless participation. The interviewees often referred to people receiving support as ‘users’. Unless otherwise stated, below, group homes and daily activity services staff are called ‘staff’ and disability sports leaders are called ‘leaders’.
5.1 Being different as (ab)normal
In the interviews, disability and ability were talked about as two different forms of identification, albeit with an interactional relationship, and they were portrayed as having varied social statuses. The interviewees elevated the able-minded; at the same time, they were critical of the elevated status of the able-minded. Randvi commented ‘All of you [disabled people] do not have very high status in society. It makes me very angry, but at the same time, it makes me really sad that they do not understand that’. Disabled people were portrayed as not understanding their social injustice, and by using phrases such as ‘all of you’ and pronouns such as ‘they’, Randvi distanced herself from those with low social status and indicated that people with ID would have an inescapably low status and categorisation. Discursive indicators of ambiguity about and shifting responsibility for the construction of disability are the rhetorical patterns of interaction used when Randvi referred to a ‘normal’ secondary subject positioning based on group identification. Rachel also talked about status and identification:
When you are above someone and are aware of how others feel, you get an image in your head that they think ‘I would like to have it like that’. It can be about having a boyfriend, going abroad, inviting people home for dinner, nice things. But these opportunities do not exist […] because she does not really fit into either level.
By using the word ‘above’, Rachel places herself in a privileged social position vis-à-vis disabled people, which gives her precedence of interpretation. Rachel’s rhetoric defines what is normal, but at the same time, it constructs disabled people as seeking normality and defines ID as abnormal. In the excerpt, the idea of a desirable life is constructed via an ableistic lens, and disabled people do not fit in.
According to the interviewees, disabled people can be part of society, but they should be aware that they will have a hard-knock life because of the practices of able-mindedness. Eivor described an assessment of one individual’s diligence:
Well, what do you want to do for a living? The person can say, ‘I want to be an actor’; ‘well, you cannot because you cannot do that. We put you in daily activity services where you can sit and pack keys in boxes’. But for a person without [ID], I think it is easier to express what you want.
Injustices following norm-breaking categorisations are amplified by putting into words what individuals cannot do. In addition, in this passage, Eivor uses rhetoric with ableist features, such as a disability’s social position and the precedence of the able mind in language. Phrases such as ‘you cannot’ and ‘we put you’ disable individuals and accentuate the meaning of social support services through actions of hegemonic agency.
Whether ID is constructed to entail individual agency lies in the interviewees’ patterns of interaction. ID was discussed as a dominant label overriding other identity formulations. For example, Randvi said, ‘I know they have their impairment, but when they come here [to the sports activity], I do not think that they are impaired: I know they are’. This means that the dynamic process of identity construction is questioned. Randvi argues that individuals ‘have their impairment’, but at the same time, acknowledges that they ‘are impaired’. Thus, ID is referred to as a functional difference and as a label for identification. The rhetoric of being ‘impaired’ rather than ‘disabled’ accentuates a struggle for equal participation; the individual becomes the object of justification. Randvi also emphasises that she ‘knows’, and thus, she confirms a rhetorical ‘truth’ in the discursive context of disability sports.
Layla talked about ID’s invisibility and unavoidably deviant status in society, noting that ‘people with disabilities are more visible in society nowadays, that it is becoming okay to be different […]. The more they are seen, the more natural it becomes’. The talk of ID is enveloped in a rhetoric normalising something different, and thus, constructing disability as (ab)normal. The elements of being ‘more visible’ and the fact that it is now ‘okay to be different’ reinforce the discourse of able-mindedness: it is only okay to be different if one is already different, and one must be different in a way that is not too norm-breaking. Layla’s notion of ‘the more natural it becomes’ accentuates ID’s process of normalisation and implies the unattainable status of being natural. Disability is constructed as a separation from identity in favour of material meanings; if one is disabled one cannot be not disabled.
Randvi talked about disability and supporting individuals in disability sports:
In the case of disability, it is a lot of repetition and monotony: do it again and again; it does not matter if you have autism or not. Just like you do with small children. It is like brainwashing […]. You constantly have to tell them ‘his is what you should do and think about’.
ID is constructed homogeneously as tedious, and Randvi reinforces her opinion by saying ‘just like’ and by referring to a discourse that is made to overlap the present discursive context: a rhetorical resource that makes one’s opinion commonplace in that it is made recognisable through several contexts. Equating disability and children, including in the phrase ‘like brainwashing’, features disablist ideas. Individuals’ independence and will are diminished by this demeaning, infantilising rhetoric. In the excerpt, participation is owned by a sovereign power that circumscribes individual agency.
To describe themselves in relation to people receiving social support services or participating in disability sports, the interviewees used such terms as ‘normally gifted’, ‘normal functioning’, ‘normally disturbed’ and ‘completely healthy’. This rhetoric (re)produces differentiation and constructs normality as a valuation of functionality. The recurrent use of ‘normal’ as a prefix further defines disability as abnormal. The portrayal of ID as inherently lesser creates discourses of dependence that are based on ableism; it positions ID In a marginalised space of dependence and tokenistic participation.
5.2 The inconvenience of intellectual disability
Identities are important rhetorical tools for constructing individual notions of ‘the self’, and labels of ID are often – and unreflectively – constructed as inherent in individuals, as things that cannot be changed and that hinder identity formation. According to Amelia, ‘It is vital to have an identity and not just be ‘Pelle with Down syndrome’, you need to be ‘Pelle that can be good at floorball’. The significance of having an identity is stressed as much as ID is associated with non-identity. Amelia defines identity according to ability, such as being ‘good at floorball’, whereas Down syndrome is a social marker for disability, and thus, a non-identity. However, it is still a label for identification. The wording ‘not just be’ positions ID as a coat over the individual that overshadows other possible identities.
Rachel talked about ID as an inconvenience for identity formation: ‘many times, this group become experts at hiding their disability’. The concealment of disability is talked about as recurring, and the phrase ‘hide their disability’ constructs ID as something shameful for the ‘group’. Because of society’s structure of acceptance towards normative functionality, that which stands out is viewed with scepticism.
What disabled people can or cannot do may be determined by disablist discourses of disability; according to Ella, ‘One who is in a wheelchair may not want to go for a walk in the forest. We think a lot about who would like to do what activity’. ID is medicalised to become a problem in an individual, and this can hinder the entire group’s activities. The use of the words ‘may not want to’ implies uncertainty in Ella’s utterance, but whether that uncertainty involves what the individuals receiving social support want or what the staff want remains ambiguous.
Eivor mentioned that ID includes dependence and that individuals receiving social support ‘are run roughshod by the wrong person at the wrong time and place […]. They control and steer and the users thank and bow. They are just happy to be here’. In this way, Eivor described a hegemonic power by which the staff appear to influence and decide the outcomes of support services. Eivor’s shifting personal pronoun leads to an interesting notion: when staff are ‘they’ disabled people become ‘users’, which perpetuates the homogenous categorisation of ID.
The results showed that people receiving social support services or participating in disability sports are constructed as dependent on staff and leaders for decision-making. Layla stated, ‘It is easier with those who can speak for themselves. It is easier to support and promote participation for them’. Layla distinguished different levels of functionality, but the phrase ‘it is easier’ points out that it is not actually easy – only easier – to promote participation.
In discourses of participation, disability refers to an individual’s functionality. Klara noted, ‘If you do not have the right qualifications or abilities [to work], then you have to assemble a jigsaw puzzle or building blocks. But the case is that many of our users are very lazy. That’s how it is’. According to Klara’s utterance, people with ID lacks ‘the right qualifications or abilities’ for the discursive context of daily activity services. She uses all-or-nothing rhetoric; one either works and thus contributes or does not work and is thus nothing. This is a rhetoric that can be made into ‘truths’ through such phrases as ‘that’s how it is’.
5.3 Wrapped in cotton
The discourse of ID as wrapped in cotton constructs individuals as fragile and needing protection from the features of ableism in society. According to James, ‘We have decided on a philosophy that we are not going to have any performance demands; here, we shall have fun. In this group [the able-minded], you may have performance goals’. James talked about an able-mindedness related to segregation of individuals, constructing disability sports participants as unfit for performance goals. The discourse of being wrapped in cotton starts from the rhetoric of normality and what is normal for whom. The phrases ‘here, we will have fun’ and ‘in this group’ are rhetorical tactics that create otherness between sports and construct two different kinds of sports: sports and disability sports.
The interviewees talked about a protective sphere around places designed for social support and disability sports that is in the disabled individuals’ best interest. Mio stated:
We do not want anyone to fail or experience a fiasco, but sometimes you must let go of your own control issues. […] They have so much that is against them in society so why should they be exposed to things in our control? We want to protect them.
Rhetoric that places some individuals in specific locations based on able-mindedness designates ID as something different and fragile. Mio’s use of the phrases ‘we do’ and ‘we want’ accentuates the collective responsibility of the ‘able-minded’ to protect and control ‘them’. For better or worse, the rhetoric of ID as exposed to society’s dangers can create a beneficial culture in a given context; at the same time, it can hinder disabled people’s right to equal participation.
Klara talked about places such as daily activity services and group homes designed for ID: ‘You are allowed to participate in your own way, under your own conditions, instead of you and I going about doing things better. You are participating on your level, where you belong: where you are safe’.
Via such phrases as ‘are allowed’, ‘your level’ and ‘where you belong’, Klara refers to the precedence of ableism in a society where ID is not entirely welcome. This rhetoric conveys othering based on an individual’s functional level. The discourse of a protective sphere around ID is something Amelia explained as follows: ‘They are used to setbacks now and then. There are many normally functional children, adolescents and adults who will never understand what it is like’. Adversity becomes normalised for disabled people as a group and a norm-breaking functionality related to inherent social injustices.
There is a discourse of compliance regarding the placement of individuals into social support services and disability sports as affirmative. According to Mio:
We have those who are really kind and are happy to answer what the staff want to hear. That is power because then I can ask the right questions so that you answer what you think I want to hear. I think that sometimes, you make it a little easy for yourself.
Attributing compliance as something inherently positive by using phrases such as ‘really kind’ and ‘happy to answer’ is rhetoric employed to create a sought-after characteristic in an individual. Support is discussed as formed from the positions of power enjoyed by staff and leaders. To ‘ask the right questions’ and thus get correct or convenient answers was something Karim mentioned. He talked about a person who ‘had four percent brain capacity; he had intubation [to eat] and was breathing through a machine’. The staff that cared for him had removed all mirrors because ‘he should not see himself like this’. Nevertheless, Karim decided to provide a mirror:
We put up a mirror. How he laughed when he saw himself! At that moment, my heart melted. He wanted to see himself; he wanted to look in that mirror. He could barely move, but he could point at the mirror because then he saw himself. He wanted to be acknowledged.
For most staff, ID was constructed as something pitiful from which people, even the subject, must be protected. Thus, individuals should be unable to see themselves as others see them. ID was talked about as deviant from the norm with the rhetoric of ‘brain capacity’, ‘tube’ and ‘machine’ highlighting differences. Karim’s utterance implied that the staff did not want to see themselves in the position of the person they were caring for and that ID is something unwanted and shameful.
5.4 Powerless participation
The interviewees discussed shortages of staff and economic resources by painting a picture of social support services and disability sports that were in a stalemate when it came to practices of participation. Layla stated, ‘We cannot help or meet requests, because we are understaffed’; Karim depicted the environment as ‘more of a storage’ facility. Layla and Karim talked about social support services’ non-prioritised status. This is a topic that James also touched on:
The problem is that we cannot market that we exist. That is a problem. The next problem is reaching out to people. If they live in a group home, they must have an assistant that comes along, and this does not always work, because there can be shortage of staff at the group home. Then you do not have time to take time for the individual user.
James depicts a troublesome atmosphere by listing problems to show the current situation. The interviewees talked about restrictions on services that lead to gridlock in places created for disabled people to participate. in this vein, Klara said:
I have a friend who has a boy with Down syndrome. He cannot talk much, but he has always been involved in everything. They have travelled, and he got along, just like all other children. And then, when he wanted to move out of the house, they were supposed to put him in a group home, where he would sit and eat from a foil container.
Here, to describe the powerlessness connected to participation and ID, Klara normalises the situation leading to ‘being put in a group home’, providing her friend’s child with a gender and emphasising so-called normal circumstances. This rhetoric contrasts with the group home. She also talks about group homes as isolated – even tragic – and places where participation is powerless. Similarly, Layla said, ‘They [people receiving daily activity services] are very compliant; not many of them are troublesome’. This further emphasises ID as subordinate in power. Layla talks about a discourse of compliance in which individuals are constructed as troublesome if they do not follow established codes of conduct. By saying ‘not many are troublesome’. Layla notes that there are troublesome individuals and that this goes against the appropriate compliance. Being constructed as compliant makes participation powerless. On this topic Ella added, ‘I think participation can be forgotten and that you are bound to routine. Everything is in a routine and you do as you have done for the last 20 years’. When Ella notes that participation ‘can be forgotten’, it suggests that staff are given agency over participation. Social support services are referred to as neglecting participation in favour of institutionalised, standardised and restricted conduct.
The interviewees discussed hierarchal differences between people with and without ID, with ID conveyed as making individuals powerless and situated on a lower social stratum. Klara stated, ‘I can be on their level and feel that they are participating in what is there for them, even though they cannot participate fully’. Here, Klara’s rhetoric to flatten hierarchal positions points to different levels of functioning and status. She does not talk about what it is like to experience or live with ID; rather, she talks about an able-minded separation of functional status and what it does to participation.
Participation for disabled people was discussed as an empty ritual of inclusion. Layla talked about a person who was moving to his first apartment in a group home and who was invited to take part in deciding where he would live. He looked at several group homes and was asked which he preferred. However, in the end, he was assigned a group home that he did not choose; therefore, ‘it felt like it was all for show. He did not get what he wanted. He had to live where he absolutely did not want to’. Layla talks about powerless participation, where individuals’ decision-making capacities are ignored and their voices silenced. Randvi also elaborated on the power of language:
If you have language and understand your speech and understand words, the meaning of words and how to use them, then, you know, language […] is not just the words but how you talk and express yourself and your body language, tone of voice and so on […]. To speak is to have status.
Randvi discusses language as a powerful social marker; those who have a strong voice have precedence in occupying hierarchal social positions.
6. Discussion
In the interviewees’ rhetoric on participation and ID, four different and partly overlapping discourses were discerned. The discourse of being different as (ab)normal turns disabled people into ‘the others’ or ‘them’, thus creating a discrepancy between ability and disability. This discrepancy is talked about as a normal state, where ID’s deviance from normative functionality is ‘normal’. The (ab)normality of disability is showcased by the uncertainty about controlling individuals or guiding them towards the right contextual conduct or removing the label of deviance from ID. However, the discourse of (ab)normality is paradoxical here; the rhetoric elevates the able-minded, and ID is constructed as immutable, as written in stone. Thus, the struggle for social recognition and justice is constructed as a constant process without end because an end that would remove the prefix ‘ab-’.
Ableist rhetoric, such as ‘it is a shame that they do not understand that they are subordinate’ or ‘it is okay to be different as long as you do not deviate too much’, emphasises the discursive differences between being able and disabled. Another rhetorical resource used to differentiate ID from being able-minded was identified as highlighting the goodness and privilege of being ‘normally gifted’, ‘normally functioning’, ‘normally disturbed’ and ‘completely healthy’. This constructs ID from a medical discourse of accepted standards and defines disability as abnormal; at the same time, as Svanelöv (2020, 2021) describes, it creates a social standard of categorising disabled people from what they are perceived as not capable of doing rather than what they can do.
ID is homogenised and talked about through the disablist rhetoric of us versus them and by belittling decision making and individual identity. This constructed discursive truth puts disabled people on the margins of participation. Ironically, these margins are the very places (daily activity services, group homes and disability sports) constructed to promote participation. However, they also serve to separate ability from disability and position disability in the margins of ability. These places are talked about in terms of ‘where you belong’, ‘where you are safe’ and ‘without performances’. Thus, they signal two things: disabled people belong in these places and these same individuals do not belong outside these places. This is in line with Foucault’s (2007) thoughts about pastoral power and Taylor’s (2015) notion that ID transforms participation as accessible in certain contexts and inaccessible in other contexts.
When places created for disabled people are talked about in terms of safety, belonging, the absence of performance goals and the presence of fun, something profound is being said about ID’s social position and status in society. This is about how normalising practices direct certain people to specific locations (daily activity services, group homes and disability sports) to protect them from the ‘normal’ world. Based on ableistic practices, people ascribed ID labels are wrapped in cotton to be sheltered from society, and thus, hindered from engaging in equal participation.
The sheltering discourse accentuates ID as (ab)normal and coats it with a protective sphere. Interviewees talked about the worry that disabled people cannot be pressured or challenged, and hence, are unable to cope with an ableist society. People receiving support services or participating in disability sports are made to be compliant and affirmative. When individuals interact often enough with discourses that tell them they are fragile and not able, that can become their truth.
ID’s construction as compliant highlights the inconvenience of ID when it goes against the ‘right’ way of doing things. People who exercise their right to support services and disability sports are made subordinate and highlighted as lesser in decision-making through an ableist rhetoric that values high functionality. Able-mindedness becomes apparent here as a process for the gradation of disability, and how much an individual deviates from normative functionality determines his or her social status, expectations, participation and control. Those working in social support services and disability sports need to widen their perspectives and not presume to know what is best for disabled people. They need to put disabled people at the heart of any decision-making process (NIN, 2019), as Karim’s story of the provision of a mirror is illustrated.
Powerless participation begins from the construction of disabled people as compliant with institutionalised and non-mutual participation. It is constructed through the rhetorical devaluation of social support services’ and disability sports’ practices. These practices cannot facilitate participation as the interviewees wanted them to, and the problem often resided in external factors, such as economics and broad societal norms and values. Jeanes et al. (2019) also report this finding, but their study emphasises a normative social approach to disability contexts that undermines disabled people’s possibilities to certain activities and places.
7. Conclusion
The idiom ‘silence is golden’ implies that it is better to be silent than to speak, but in many situations, how words, connotations and pronouns are used with reflection on how they will affect individuals is what is ‘golden’. What we say does something, and it has consequences for those it concerns – in this case, both disabled people and people working in social support services and disability sports contexts. The depiction of ID as something different and abnormal (re)constructs labels of deviance, meaning that otherness becomes a normalised position. Via ableist rhetoric, identities of otherness and difference risk being reinforced, and this will have consequences for individuals’ agency and social justice.
Disabled people’s right to equal participation, expressive freedom and identity construction is steered by discursive practices about (dis)ability. For ableism to be eradicated, the ‘us versus them’ rhetoric, where disability is constructed as (ab)normal without access to certain societal contexts, needs to be changed. Because society is built on structures of normative functionality, it is naïve to think that the ‘us versus them’ rhetoric will disappear, because: however, the way ID and participation are talked about can change. Often, the rhetoric of participation in relation to disability revolves around what individuals cannot do and what they cannot be exposed to. Instead, the rhetoric in disability sports and social support services should focus more on what individuals can do – a redirected focus on abilities rather than disabilities.
Social services and disability sports workers have good intentions in terms of providing support, and in many ways, they improve the lives of disabled people drastically through their close and active work with disabled people’s rights. However, they are part of the (re)construction of discourses of ID and participation, and by extension, they play a major role in the wider society’s perspective on ID and participation. This means that they are a force to be reckoned with in the fight for disabled people’s rights for equal participation. Indeed, overprotection from authoritative power – or externalised fear based on deviant labelling – means that individuals are wrapped in cotton, rendering participation powerless; at the same time, disabled people are charged with being an inconvenience. Thus, the remainder of this conclusion directly addresses practitioners who work with disabled people: the justification of disabled peoples’ social rights starts with you and the words you use. In terms of whether you acknowledge what individuals can or cannot do and whether your work to improve social justice departs from changing the individual or changing environmental barriers. You are part of the discourse on ID and participation, and you have the power to affect and change the discourses presented in this study.
Competing Interests
The authors have no competing interests to declare.