This article contributes to the growing research literature (Griffiths 2019; Slater 2015; see also Kelly & Carson 2012) at the intersection of youth and disability by focusing on young disabled people’s activism and advocacy. These studies have analysed how young disabled people carve their way into established and formal political arenas. For example, Griffiths (2019) analysed how young disabled people engage and participate in the disabled people’s movement in the United Kingdom. Griffiths found that young people distance themselves from the disability movement due to the conceptualisation of youth within that movement. The understanding of young people as future adults fails to account for young people’s here-and-now experiences and contributions to the movement’s aims and strategies (Griffiths 2019; Griffiths 2020). Kelly (2010) on the other hand argues that we are in need of a new description of disability movement. By analysing the Canadian disability movement, Kelly concludes that instead of one disability movement, we should talk about multiple movements, since the field of activism has expanded due to the restructuring of the non-profit sector. This restructuring generates activism outside of formal organisations, which requires new conceptual tools to be acknowledged. However, creating youth leadership and engagement in disability movements and formal organisations is still considered a valuable and preferable aim in the scholarly literature (Kelly & Carson 2012).
Another recognisable strand in the research nexus of youth, disability and activism is the studies that analyse and highlight the importance of mundane acts of resistance to various forms of oppressive structures and discourses (Slater, Ágústsdóttir & Haraldsdóttir 2018; Slater 2015; see also Loja et al. 2013). Slater, Ágústsdóttir, and Haraldsdóttir (2018) explore the subtle subversive everyday acts and encounters through which disabled young women resist normative gender roles and ableist and heteronormative ideals of adulthood. As part of their exploration of ableism in the daily lives of disabled people, Loja et al. (2013) acknowledge the various strategies disabled people use to resist the imposed societal position and expectations of the non-disabled imaginary.
Subtle forms of resistance and formal activism and advocacy have been portrayed, although inadvertently, almost as two separate fields through which young disabled people’s political participation is supposed to actualise. In line with Kelly and Orsini (2016, 15), I assume that formal ways of influencing and engaging—such as in civil society organisations or more informal ways, for example, blogging, artwork and direct action—need not be understood as opposites or situated in a hierarchy. For example, in Finland, which is the geographical context of this study, young people show increased interest in the formal political institutions at the same time they seek creative ways to take part in societal change outside formal institutions (Pekkarinen & Myllyniemi 2019). Thus, in this article, I aim to analyse how young disabled people narrate their position between formal and informal ways of doing activism. By combining Bobel’s (2007) ideas of activism and social movement literature with disability studies literature, I propose that in order to understand young people’s disability activism, we need to consider the ambivalent discourses around markers of being a ‘proper’ activist and doing activism.
Grounded in interview data and inspired by a narrative approach, I ask (1) how young disabled people position themselves in their narration in relation to being an activist and (2) how they reason between different ways of doing activism. I begin by situating my study in the scholarly discussions concerning the cultural ideals of activism and identifying as an activist. I detail my analytical perspective, which combines social movement literature and disability studies literature. Both fields have drawn attention—in different albeit complementary ways—to how political activity is structured in both social movements and theories of activism. After that, I describe my data and methodological starting points. Then, I present the findings, structured around the two research questions, and conclude by discussing how acknowledging ambivalence in activism practice and research does not necessarily diminish the legitimacy and efficacy of activism but could enable us to challenge the able-bodied understandings of activism.
To analyse young disabled people’s narration about their disability activism, I have constructed an analytical perspective that combines social movement research with disability studies research. This combination allows me to both grasp young people’s narration in relation to the activist identity and analyse how they reason between different activist practices.
As an analytical tool, I deploy social movement scholar Chris Bobel’s (2007) idea of the ‘perfect standard’ of activist. Bobel coined the term ‘perfect standard’ to explain why some people participating in the menstrual activism movement did not want to call themselves activists. Bobel noted that the participants in this movement placed very high prerequisites for claiming the activist title. For Bobel’s research participants, to be worthy of the activist title, one had to embrace certain values, devote time, be committed and ‘live the issue’ regardless of personal cost (Bobel 2007, 153). My analysis develops this idea to show that individual assessment of the worthiness of the ‘activist’ title (self-claimed or projected onto others) is less important than exposing and challenging the able-bodied activist framings, which place the label out of reach for young disabled people.
Bobel’s broader theoretical enhancement regards the relation between personal and collective identity in social movements and activism. According to Bobel, the majority of social movement theory assumes that being an activist requires individuals to identify themselves as part of a collective of the movement. Thus, to be part of a social movement, one has to identify as a member of a particular group. Consequently, the disparity between individual and collective identity is regarded as weakening the collective power of action or even preventing people from participating in social movements.
I also find Bobel’s conceptual tool useful in theorising disability activism. The relation between individual and collective identity is also visible in research about disability activism and the disability movement. However, this relation is approached almost solely from the perspective of individual disabled persons identifying themselves as part of the disability community. The general assumption in analyses of disability activism is that disabled people’s political consciousness and adoption of a politicised sense of identity are viewed as prerequisites for activism (Kelly 2010; Kasnitz 2001). Disability studies scholar Tom Shakespeare (2006, 71) has described the political consciousness awareness as ‘the process of turning labels into badges’, where disabled people turn the negative labels into a source of pride and wear them as a badge to express their membership in the disability collective. According to Shakespeare, this has allowed people with impairments to align themselves as members of a disability collective, which in turn has been seen as a prerequisite for political action.
While the idea of turning labels into badges is fruitful in terms of disability identification—that is, how it relates to people willing to identify themselves as part of a disability movement—it does not account for the activist identification. When I started my preliminary analysis, I noted this dual account of identification. While the interviewees included disability as a valuable source for identification, they expressed an ambivalence regarding the activist identification. The identification as an activist is what gives Bobel’s work analytical power, and my aim is to contribute to the research about disability activism by elaborating this dimension.
It is also important to note that the barriers to doing activism and to being an activist has not gone fully unnoticed in disability studies research. For example, Susan Wendell has drawn attention to how political activity is understood in various social movements:
Fluctuating abilities and limitations can make people with chronic illnesses seem like unreliable activists, given the ways that political activity in both disability and feminist movements are structured. (Wendell 2001, 25)
As outlined by Wendell, the way political activity is structured in various social movements and activism often relies on able-bodied assumptions. Although Wendell considers what it would mean to accommodate chronic illnesses into our understanding of political activity, she is making a more profound critique of cultural understandings of activism that emphasise commitment and excessively push one’s body and mind. As Wendell has influentially noted, disability movements are not untouched by these understandings. Some disability scholars have questioned the prerequisites for being recognised as a disability activist. Kelly (2010), citing Wendell (2008), notes how disability activism and advocacy are sites, where activist cultural figures circulate, and influence our understandings about who is considered a disability activist. From this perspective, Kelly analysed the implicit disabled identity that is mobilised in direct-funding advocacy. Kelly argues that the image direct-funding advocacy creates relies on a self-sufficient ‘consumer’ identity.
The activist identification also intertwines with the aims and strategies of disability activism. In a recent anthology about disability activism, Chataika et al. describe that ‘the intention of any disability activism is to break attitudinal, environmental (physical and communication) and institutional (policy and programming) barriers, which prevent disabled people from realising human rights, just like other citizens’ (2019, 21). Concerning the strategies of activism, much of the recent scholarly work in the field assumes that a broad range of social activities can and should be included under the umbrella of disability activism (Berghs et al. 2019). Indeed, disability scholars and activists have pushed forward our thinking on what acts count as subversive. They often make this move by utilising Michel Foucault’s theoretical concept of resistance and its developments in queer theory (McRuer 2018, 92). The concept of resistance has made it possible to analyse claims and actions that do not necessarily resemble our customary ideas of political activism without downplaying the need for more conventional patterns of political action. This relates to the larger discussions in disability studies on emancipation and resisting oppression: some maintain that activism should focus on materialist redistribution, including legal changes and social policy reforms, while others highlight the need for cultural resignification, for example, through blogging (Sépulchre 2020). Through my analysis, I propose that overt and covert activism are complementary. As Rosemarie Garland-Thomson (2002, 23) writes, some cultural practices can function in activist ways, although they are seldom considered as activism.
Finally, although the focus of this article is the cultural understandings of disability activism and the figure of the activist—and the barrier they pose for young people’s activism—I do acknowledge the other kinds of ‘barriers’ to disability activism and advocacy. From a more materialist perspective, Petri, Beadle-Brown and Bradshaw (2021) have analysed how the lack of material resources—such as unpaid voluntary positions in disability organisations and transport and venue costs—hinder autistic people and people with intellectual disabilities from practising self-advocacy and engaging in the disability movement.
The data analysed in this article consists of five interviews I conducted with young disabled adults, aged 22 to 26, in spring and summer 2019. The recruitment process was twofold: participants were recruited using personal contacts and the snowball method, which in practice means that after every interview, the interviewee recommends other persons who might be willing to participate in the study. I formulated the information letter broadly, explaining that I was looking to interview young people who consider themselves disabled and are somehow engaged in societal advocacy. I conducted four interviews face-to-face and one via email, according to the interviewee’s wishes. The length of the interviews ranged from one hour to an hour and a half. Before the interviews, I, as the researcher, and the interviewee, as the participant, discussed voluntariness, anonymity, data use and data storage. After that, we both signed a written informed consent form. Finally, I carefully transcribed the recorded face-to-face interviews.
Interviews were semi-structured with accompanying questions around three general themes: becoming an activist, how one enacts activism, and future perspectives for activism. In a sense, the interviews were inspired by the biographical approach (Shah & Priestley 2011), with the aim of being open to allow participants to reflect and interpret their own life paths and events. The only recruitment criteria for the participants were that they were disabled and involved in activism and/or societal advocacy. I did not presuppose any self-disclosure from participants in terms of gender or impairment as a prerequisite for participating, although many participants brought these issues up in one way or another at some point during the interview. My reasoning behind this was not to belittle the possibility that different impairments matter but to make space for the young people to take other positions. Many scholars (e.g., Shah & Priestley 2011, 152) have pointed out that academic literature often treats disability uncritically as a ‘master status’, which leaves little or no room for intersectional identities. In terms of gender diversity, two of the participants identified as male, two as female and one as non-binary. Three participants brought up their non-heterosexual identity during the interviews. Thus, gender and sexuality are not just background information of participants but, as will be discussed in the findings, important aspects of young disabled people’s activism.
My analytical approach is inspired by narrative inquiry. Aligned with this methodological tradition, I understand personal accounts and statements as always partly shaped, but not fully determined, by cultural practices and culturally available narratives. From this perspective, personal stories are not treated as ‘authentic’ expressions of reality or unquestioned routes into the ‘truth’ but rather contextually dependent meaning-making practices (Atkinson & Delamont 2006). This epistemological perspective guides my analysis towards ‘the ways in which sense is being made’ (Davies 2004, 4). Following this logic, I approach stories of being an activist and doing activism as always partly told in relation to cultural ideals of ‘good’ activist and activism.
In addition, the idea of narrative positioning guides my analysis (Davies & Harré 1990; Bamberg 2007). As Bamberg (2004, 366) notes, drawing from Judith Butler’s ideas of performativity and identity, narratives move dynamically between being positioned and positioning oneself. These metaphorical constructs describe the agency–structure relationship in which ‘narrators position themselves in relation to discourses by which they are positioned’ (Bamberg 2007, 172). In the context of this article, this means paying attention to how interviewees describe themselves as activists and how this sense of self is established, or put under suspicion, in their narration.
I started my analysis by closely reading all the transcribed interviews. In the first stage, I focused on commonalities and differences between interviews. At this point, I already noted how many participants pondered on what counts as activism and how they distanced themselves from the ‘visibly in the streets’ type of activist, although many saw the value of such action and had taken part in public demonstrations. I then read the interviews to determine how participants represented themselves in their narration. Their self-representation was related to an imagined, yet culturally recognisable activist figure. In terms of my second research question, I paid close attention to how the participants described their engagement in political activities and modes of activism and how they justified certain ways of participating as superior.
Although some narrative traditions favour reconstructed storylines and comprehensive biographical accounts (see e.g., Niemi & Mietola 2017), for ethical reasons I depart from this tradition. I present the findings through single extracts, which I carefully selected to ensure participant anonymity (all names are pseudonyms). Therefore, I have removed certain details (such as organisation names, places and events) from the extracts.
The interviews started with an open question about one’s own trajectory to activism. All participants’ narrations shared a certain ambivalence as to whether they actually saw themselves as activists and, if they did, at which point of their life course they had started to do so. For most participants, identifying as an activist was a source they drew from when describing themselves. For Mira, the term disability activist offered a suitable language to describe herself:
Yes, nowadays it’s actually among the first things I bring up when I introduce myself, and I think it sums up quite well different parts of who I am, but it hasn’t always been that way.
Although other participants had also adopted the idea of being an activist at the time of the interviews, like Mira, they had not always done so. Indeed, much of the participants’ narration seemed to revolve around popular notions of being an activist and whether this position is actually available to everybody. As Helmi noted during the interview,
It happened by coincidence, at first I didn’t consider myself as an activist. I always saw myself as more in the background, not the first person at the barricades and demonstrations but more on social media and stuff like that … and it felt important because activism doesn’t mean that you have to stand somewhere with a sign in your hands.
For Helmi, to consider oneself an activist means countering the general image of an activist as someone who takes part in demonstrations and is visibly on the barricades holding a sign. Besides countering the general image of activists, Helmi’s narration is reworking the spatiality in which they operate, which emphasises social media as a valuable and perhaps more accessible venue for activism.
As Bobel (2007) has noted, a ‘perfect standard’ of activist operates in subcultures of activism and social movements, which can place the label of activist out of reach for many people who do activism. Bobel (2007, 149) proposes distinguishing between doing activism and being an activist to make sense of why people who do activism sometimes avoid self-labelling themselves as activists. Although Bobel does not explicitly consider able-bodiedness when discussing the markers and values that shape the definition of a ‘proper’ activist, some of the young people I interviewed made this connection quite explicitly. For example, when I asked about the role, meaning and significance of public demonstrations, Suvi replied,
No [they are] not, because I can’t always go. I mean taking part in demonstrations depends on what my physical condition is at the moment. Mentally I’m usually always up to it.
Although the interviewees acknowledged the general significance of physical presence in demonstrations, the extract above highlights their inaccessibility. Despite being critical around notions of normative embodiment, and explicitly taking such norms as the target of activism, the rhetoric of ‘putting your body on the line’ as a proper marker of an activist sometimes circulates around disability activism (Li et al. 2018). In Suvi’s narration, being able to question this rhetoric did not call into question their role as activist.
Activism has been described as requiring a series of embodied labour (Berghs et al. 2019, 465), from physical presence and devotion of time to willingness to put your private issues on display to advocate for oneself and others. This idea of devotion and relentlessly being ready to react, especially in relation to social media advocacy, was noted by Johan:
I think during these times, it actually feels quite revolutionary not to be on social media, not being ready to react and do something. I had a social media account for a while but I thought it was horrible.
The use of social media has been marked as a new method to channel disability activism (e.g., Pearson & Trevisan 2015). Studies analysing disability activism and advocacy on social media have focused on what kind of content and claim making is mobilised on different platforms (Sépulchre 2019; Trevisan 2017). Here, I would like to draw attention to the social media user’s perspective and how it links to the figure of the proper activist. Christensen-Strynø (2020) has analysed how the development of social media time relates with disability activism, their simultaneous opportunities and challenges. Christensen-Strynø notes that technological affordances can hold transgressive potential by allowing people to connect across continents and at different bodily paces. However, content is not produced and distributed in isolation from the demands of social media platforms. As Christensen-Strynø (2020, 93–94) argues, these platforms operate on the logics of constant presence and demand their users’ time and attention. In Johan’s narration, it is the demand to be ‘ready to react and do something’ that caused him to retreat from social media. Furthermore, unwillingness to comply with the demands of constant presence and response on social media was positioned as a revolutionary act.
My interviewees not only positioned themselves as activists in relation to cultural understandings about the ‘proper’ activist but also in relation to age. Sometimes age can call one’s activist identity into question. When Mira discussed her early trajectory to activism, she described the encounters with her family members:
Usually the response was like ‘okay let her try her own thing’. I mean I was so young that people didn’t take me seriously. People wouldn’t take it [my activism] as part of who I am.
In exploring how youth has been conceptualised in the United Kingdom, Slater (2013) suggests that disability is rarely examined in youth subcultural studies, although these studies often aim to analyse how different youth groups practise subversion and resistance. Despite the long history of disability activism, disability still has connotations in paternalism and passivity. As Slater (2012) points out, politically active young disabled persons disturb these discourses of passivity. In Mira’s narration, although her early exploration of activism was not downplayed by her family members, they appear to have seen it as a phase that would perhaps fade away if no one took too much notice of it.
Recent scholarly literature has emphasised the need for broad conception of disability activism. In this sense, ways of doing activism range from artistic performances, traditional lobbying and advocating on social media to direct action (Jones et al. 2019). Both recent anthologies (Berghs et al. 2019; Soldatic & Johnson 2019) on disability activism pose important questions concerning different modes of activism and their enactment, such as the relation between more formal and more informal activities. For example, how does more agonistic, grassroot-level protesting relate to advocating as a member of a representative organisation? How do newer forms of advocacy or activism on social media create potential for social change? Understanding different forms of disability activism on a continuum raises the important question of how these forms are reasoned and impact on social change.
Based on my interviews, many formal activities, such as organisational membership, still provide important avenues for peer support and pathways for political activity. This seems to be in line with the Finnish Youth Barometer, which shows young people’s increased interest in formal political arenas, such as participating in non-governmental organisations (NGOs) and youth councils. According to the Barometer, young people also use other ways to influence, such as consumer decisions (Pekkarinen & Myllyniemi 2019). At the time of interview, many of my participants had some kind of connection to different disability and civil or human rights organisations, some more actively than others. Griffiths (2019, 138) has coined the term ‘trajectories of membership’ when analysing how young people establish and recognise their membership in the disabled people’s movement. Mira described her trajectory the following way:
I was around 14 years old when I went to this event [organised by a disability organisation] all by myself and it felt important because suddenly I realised I was no longer the child passively participating, but in a way I was ‘the adult’ who could act as a role model for others … and quite soon after those experiences I became a member of different youth organisations.
The passage above reflects two quite different positions available for young disabled people wanting to take part in the activities of disability organisations. On the one hand, disability organisations provide peer support for young people based on assumed shared experiences of disability; on the other hand, young people can later become providers of peer support and role models, as happened to Mira. Interestingly, membership and sense of belonging rely not so much on becoming aware of one’s disability but on the broader aims of youth involvement in disability organisations. In this sense, the extract highlights the manifold nature of disability organisations as service providers organising leisure time activities and peer support based on ‘passive’ membership on the one hand and political advocacy organisations based on ‘active’ membership on the other (Waldschmidt et al. 2015, 113).
Other interviewees were more hesitant about the potential for formal advocacy through disability organisations. They questioned the extent to which it is possible to raise critical questions concerning society and disabled people’s positions without being delegitimised as an organisational actor. Johan described this ambivalence between the necessity of interest group thinking through disability organisations and the limited space for a provocative attitude:
I haven’t been part of disability organisations, but I do consider interest groups as a necessary part of society. I would welcome more sharp thinking or perhaps even a little provocative attitude, but I acknowledge this doesn’t fit into all disability organisations.
Suvi speaks about similar experiences as Johan, although she is actively involved in a disability organisation as an educator on ableism and equality:
I do a lot of training through organisations and stuff like that … but ideally it would allow me to be the kind of activist I am. Like discussing societal issues around the table and not having to think whether my opinion is too radical.
Both Johan and Suvi highlight the ambivalence some interviewees raised when asked whether taking part in disability organisations was an important avenue for their political action. Indeed, there is much debate on whether disability organisations should work in collaboration with governmental actors or maintain a critical stance as outside observers (Blackmore & Hodgkins 2012). Finland, partially in line with other Nordic countries, has a peculiar model of civil society and associational activity (Alapuro & Stenius 2010) that echoes in both extracts above. Finnish civil society actors are often described as working in close interaction and being mutually co-constitutive with governmental actors (Luhtakallio 2012); the distinction between state and civil society is more blurred than in other countries (Alapuro 2010). Both Johan’s and Suvi’s narrations imply that to be a disability organisation actor one has to accept, albeit situationally, the terms laid out by the political landscape and adopted by disability organisations, which perhaps favours strategic co-operation more than provocative attitude and radical opinions. For Johan, the identity of ‘provocative activist’ and the demands posed by formal participation in organisations were incompatible, whereas Suvi had reconciled the mismatch, without finding the situation ideal.
Mira, who described herself as traditional interest group lobbyist, illustrated her frustrating encounters when advocating under the official mandate of disability organisations:
I’ve been thinking a lot about whether people actually listen to what you have to say. I mean, when I go to hearings in different administrations, people do listen, but does it change anything, I don’t know. Usually people just move on and it doesn’t affect anything. Having some kind of representative authority usually helps, not like it’s going to automatically be more effective but at least it guarantees some kind of continuity.
Working under the official mandate of a disability organisation had granted Mira access to hearings in different administrations. There is a certain scepticism attached to Mira’s narration as to whether these hearings have an impact or are merely technical formalities. Mira seems very aware of the tokenistic nature of hearings, but she represents them as a crucial part of disability advocacy. Mira also pointed out the high threshold of these hearings, as they are formal activities that ‘require a series of cognitive capabilities, social skills and a specific language’, which excludes many disabled young people from participating.
These examples highlight how the practices of advocating through disability organisations present young people with both opportunities and obstacles. There seems to be a certain cultural script young people have to follow to play the role offered them in disability organisations. This includes toning down one’s radical opinions and managing the tokenistic positions young people encounter in formal political arenas. Despite such obstacles, the interviewees narrate disability organisations as important ways to advocate disability issues. One frustrating example young disabled people encountered in their advocacy efforts was the lack of intersectional thinking in organisational practices. Gender diversity and sexuality were two key disability-related themes Helmi advocated for, but their attempts to bring these themes alongside disability met with single-issue thinking:
People can be very ‘progressive’ in single issues. Like being gay is ok, gender minorities ok, disability ok. But when you talk about disabled sexual minorities suddenly people’s prejudices become visible … so you can advocate for sexual rights, but as long as its heterosexuality, not homosexuality.
Despite much scholarly and activist work on gender and sexuality in relation to disability, they are still often viewed as secondary to more politicised themes, such as education, work and housing (Santinele Martino & Campbell 2019). In Helmi’s extract above, advocating for sexuality and disability almost automatically meant heterosexuality. To counter the heteronormative assumption, Helmi practiced the ‘critical practice to remark heterosexuality’s supposed invisibility’ (McRuer 2006, 1). Heterosexuality can be exposed as a hidden norm not only on a societal level but also in disability organisations. Despite being seemingly frustrated with the single-issue thinking in disability organisations, Helmi felt it was too important an issue not to use every possible way to advocate. Advocacy for sexual diversity can thus progress simultaneously on two levels: first, aiming to get disability organisations to adopt gender and sexuality as equally important themes worth advocating for and, second, aiming to counter the broader societal assumption that disability is the factor young disabled people consider most politically important. One possible, although not ideal, pathway for broader societal advocacy is under the official mandate of a disability organisation.
Expanding the politically relevant themes seems to be key for young disabled people who want to advocate beyond disability organisations. Many participants had a rather clear understanding of the limits of formal advocacy through disability or other human rights organisations, and some had knowingly expanded their repertoire to advocate for issues they considered important. During the time of the interviews, one participant voiced how ‘doing music with a twist of disability politics’ offered a creative way to advocate for disability issues. Kim, for example, was active on social media, and writing a blog from the disability perspective offered him another platform besides the physical:
Yes I keep writing a blog where I discuss these issues […] I mean it good to be active online and advocate there also, but it’s also important to get a physical voice out and be heard through that.
Although online advocacy can become as time-consuming as physical advocacy on the streets, it does play an important role in young disabled people’s activism. In the passage above, Kim narrates the ambivalence related to social media advocacy. He voices it as important, but with a certain hesitancy about the uncertain reception of the online audience (see e.g., Trevisan 2017, 205). Instead of approaching online advocacy such as blogging from its possible visible and measurable outcomes, it seems fruitful to approach it in terms of what it resists. When I asked Kim why he blogged, he replied,
I wish we had more diverse stories of disability. Instead of these superhero stories describing how someone fell and now he or she is healing and competes in sports and people can be astonished and stuff like that. I wish there were stories without glorification.
Disability scholars have long theorised narrative practices as a vital form of political mobilisation (see e.g., Shakespeare 1996). Narrative practices give people alternative narrative resources. Kim’s main motive for blogging was to counter the common narrative about disability as an inspirational story. As Grue (2011, 108) has argued, the inspirational figure, or the supercrip, is a powerful symbolic construct which affects not only how disabled people ought to live their lives but also how disabled individuals must negotiate these narratives, for example, to get media attention. For Kim, taking part in ‘narrative resistance’ (Tarvainen 2019) was not so much about accurate representation of disability but the need for a plurality of narratives and to resist the evident harmful narrative of disability as something to overcome.
By analysing five life history interviews with young disability activists, I have focused on young disabled people’s activism and advocacy. I approached them from two angles. First, I unpacked how the cultural ideals of activism affect young disabled people’s experiences of their own activism. For young disabled people to become recognised as activists meant countering the culturally powerful image of the activist as rallying in the streets. While young people saw the need to expand (and criticise) the general, able-bodied understanding of activism to accommodate disability, they still viewed public and visible demonstrations as important. Though social media advocacy is sometimes portrayed as accommodating and accessible to all, young people’s critical reflection about its demands to devote time and constant presence reveals how the commercialised logic of social media structures political agency (Christensen-Strynø 2020, 94). Most participants, as politically active young disabled people, had encountered the general assumption of passivity which disability stereotypically entails (Slater 2012). Although most visible as a question of age appropriateness, this assumption seems to be powerful regardless of one’s actual age.
Second, I analysed how young disabled people reason between different political arenas. I paid attention to how the formal and institutional political arenas are narrated, focusing on the opportunities and obstacles attached to them. Formal arenas, such as disability and other civil or human rights organisations, still occupy a crucial role in young disabled people’s activism and advocacy and thus enable interviewees’ political agency. However, mainly due to organisational practices, young people sought other ways of practising their political agency. These organisational practices partly resemble Griffiths’s (2019, 206) findings about the challenges and barriers young disabled people face when attempting to engage with the disabled people’s movement.
Based on my analysis, the key to young people’s engagement in disability and human rights organisations is space to advocate themes and topics important to them, which includes the opportunity to move beyond conforming to existing organisational themes and practices. Most notably, gender and sexual diversity appeared to be crucial themes that young people find difficult, but not impossible, to advocate for through formal disability organisations. In recent years, disability organisations have taken gender and sexual diversity, at least symbolically, as their priority. For example, nowadays, disability organisations are a visible part of the Helsinki Pride March, but in 2015, the newspaper Helsingin Sanomat wrote this in a headline: ‘Disability Organisations Were Conspicuously Absent in the Helsinki Pride March’ (Bäckgren 2015). Executive directors from two major disability organisations were interviewed, and they explained the absence of participation in the march as just having never occurred to them.
The fact that some participants felt more at home in formal political arenas and institutions, while others voiced criticism about their conformist nature, highlights the different frames through which civil society organisations approach young people in Finland. The different frames through which young people are approached concerns disability organisations and is in line with findings from studies about Finnish nationwide youth organisations. For example, Laitinen (2018) has pointed out that the roles young people are assumed to inhabit in youth organisations can vary greatly: while some organisations approach young people as active civil society agents, others see young people as passive recipients of organisations’ support and opportunities for social participation. It might be reasonable to assume that this ambivalent framing accounts for disability organisations as well. Thus, young people with an overtly activist and provocative orientation might feel out of place in organisations based solely on support and social participation. Few major disability organisations have set up youth groups or advocacy groups. How these groups are positioned in disability organisations and how young people experience these remain questions for future research.
For analytical purposes, Thomas (1999) coined the distinction between barriers to doing and barriers to being. According to Thomas, barriers to doing are material, and barriers to being are attitudinal barriers disabled people encounter in society. Although lack of material resources is a major determinant for one’s activism and advocacy (Petri, Beadle-Brown & Bradshaw 2021), cultural understandings of what makes a ‘proper’ activist can pose a real attitudinal barrier when they are based on able-bodied assumptions and ideals. While it is important to acknowledge the lack of material resources preventing young people from doing activism and advocacy, ignoring young people’s relevant themes, topics and tactics through which they wish to do activism can be equally disengaging. In the context of disability activism, the key issue is not whether individuals are ‘worthy’ of the title of activist, but whether the able-bodied assumptions allow young disabled people’s activism to become recognised as such. Hence, it is crucial to ask what assumptions are at play when certain acts are considered ‘real’ activism and others are not.
I would like to thank all the young people taking part in my research. Additionally, I want to thank the two anonymous reviewers for their critical but encouraging comments.
The research was funded by the Kone Foundation and the Strategic Research Council at the Academy of Finland, decision no 336548, 336551.
The author has no competing interests to declare.
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