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Ableism and the Life Stories of People with Disabilities

Author:

Merja Tarvainen

University of Eastern Finland, FI
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Abstract

This paper investigates the narrative circulation of ableism. By drawing on anti-oppressive perspectives and narrative inquiry, this article argues that narrative circulation is crucial for understanding the performance and practice of ableism. The research question was as follows: How is ableism concerned in life stories by people with disabilities? Life story data (Life of Disabled Persons in Finland 2013–2014) was analysed using the model of narrative circulation (MNC). The analysis used the concept of conditions, which refers to both sociomaterial and discursive conditions. Two main ways were found: ableism as Othering condition and narrative resistance against ableism. Ableism can rule out narrative inclusion but that can be resisted. More inclusive narrative practices can be developed as people with disabilities are involved in wider narrative circulation.

How to Cite: Tarvainen, M., 2019. Ableism and the Life Stories of People with Disabilities. Scandinavian Journal of Disability Research, 21(1), pp.291–299. DOI: http://doi.org/10.16993/sjdr.632
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  Published on 05 Dec 2019
 Accepted on 11 Nov 2019            Submitted on 18 Feb 2019

Introduction

Ableism is a set of beliefs that produces disability as a counter-image to able-bodiedness and, hence, as deviance or unwanted difference (Campbell 2009: 3–30, 197). According to feminist disability studies and anti-oppressive studies, ableism is the most dominant disability narrative in Western societies (Ahlvik-Harju 2015: 224; Campbell 2009; Garland-Thomson 2002). This paper investigates the narrative circulation of ableism. By using anti-oppressive perspectives (e.g., Campbell 2009) and narrative inquiry (e.g., Hänninen 2004; Polkinghorne 1995), this article argues narrative circulation is crucial for understanding the performance and practice of ableism. In their study on ableist discourses about impaired bodies concerned by people with disabilities, Ema Loja et al. (2013) noticed people with disabilities face ableism as they narrate their experiences.

By following Fiona Kumari Campbell’s (2009: 19–20) critical approach to ableism, this paper suggests it is more fruitful to investigate the logic and consequences of ableist narrative than just taking ableism as the so-called master narrative (Campbell 2009: 19–20). Therefore, this study investigates the ‘performance’ and ‘practice’ of ableism (Campbell 2009: 3) through using the model of narrative circulation (MNC) (Hänninen 2004) to explore ableism and life stories by people with disabilities. According to the MNC, people construct their inner stories to themselves and told stories to other people. Stories are constructed in a dialogue with the available resources of the narrative circulation. As a result, individual stories become connected to these circulating narratives, which then offer resources to interpret life events. A key concept of the MNC is conditions, which refer to both material and discursive ones concerning living and narrating (Hänninen 2004.) In this study, the performance and practice of ableism are approached with the concept of conditions concerning living and narrating. The research question is as follows: how is ableism approached in the life stories by people with disabilities? The data consist of the life stories of people who participated in the ‘Life of Disabled Persons in Finland 2013–2014’ project.

Ableism and narrative circulation

The body is the crux of ableism, as it generates otherness by categorising bodies: the normative ableist logic separates the wanted bodies from the unwanted ones and, hence, constructs disability as bodily difference (Campbell 2009: 5–10). The ableist narrative is also known as ‘the normalcy narrative’ or ‘a comforting narrative’ even though ‘they are everything but comforting’ (Ahlvik-Harju 2015: 222–224). According to Fiona Kumari Campbell (2009: 5), ableism is a ‘network of beliefs, processes and practices that produces a particular kind of self and body (the corporeal standard) that is projected as the perfect, species typical and therefore essential and fully human’. Ableism in narrative circulation can be understood in terms of epistemic injustice, which, in general, concerns prejudices that influence individual and social identities (Fricker 2007: 27).

Ableism constructs inequality because the performance and practice of ableism imply an ‘epistemic wrong’ and bear ‘a social meaning to the effect that the subject is less than fully human’ (Fricker 2007: 44, 66). Such a construction places people with disabilities in an unequal position in the given narrative circulation because the ableist disability narrative feeds an understanding of disability as deviance or unwanted difference (Campbell 2009: 5, 39, 43; Schalk 2013). Furthermore, according to ableist logic, deviance demands medical treatment and interventions (Ahlvik-Harju 2015; Davis 2013; Svendby, Romsland & Moen 2018).

Because ableism dominates narrative circulation, disability is narrated in accordance with the ableist narrative of disability and people with disabilities face ableism as they enter the narrative circulation. According to Miranda Fricker (2007), epistemic injustice consists of two forms: testimonial and hermeneutical. Testimonial injustice refers to conditions where prejudices guide the acceptance of a story (Fricker 2007: 1); the way stories are received by particular narrators is pre-determined with prejudices. Hermeneutical injustice, in contrast, occurs when there is a gap between experiences and the available collective resources to narrate them (Fricker 2007: 1). According to Fricker (2007: 152), hermeneutical inequality is ‘inevitably hard to detect’. Similarly, ableism is not easy to catch or locate. According to Campbell (2009), ableism is embedded in institutional practices and everyday performance, which is the performance and practice of ableism. Against this background, disability narratives are easily considered as performing outside the norm (Campbell 2009: 10). Dominant narratives, such as ableism, challenge the telling of different stories; they can ‘narratively dispossess people’ or ‘prompt narrative foreclosure’ (Baldwin 2013: 106). Culturally dominant narratives on disability talk about ‘overcoming’ disability or represent disability as an individual tragedy (Campbell 2009: 29–35; Loja et al. 2013: 193; Oliver 1996: 34). As a result, according to Campbell (2009: 13), disability becomes ‘unthought’ in an ableist framework. The challenges of disability narratives stem from the available resources of the cultural stock of stories, as insufficient or stigmatising narratives feed misrecognition and injustice (Fricker 2007).

The previous studies on ableism and disability have critically investigated discursive practices, such as the use of language (e.g., Harpur 2012; Schalk 2013), and some of them focused on the material conditions and discursive practices of ableism (e.g., Loja et al. 2013; Mik-Meyer 2016; Penketh 2017). According to the previous studies, the practice and performance of ableism are rooted in various sociomaterial and narrative conditions (e.g., Cockain 2018; De Schauwer et al. 2016). Elina Vaahtera (2015) studied the complex mechanisms of ableism in the Finnish context particularly. Additionally, previous studies have noted the significant interaction between stories, bodies and the construction of difference (e.g., Coleman-Fountain & McLaughlin 2013; Mik-Meyer 2016; Smith & Sparkes 2008). According to ableism, the body is a site of difference, which from a narrative perspective needs further consideration because narrative agency is unavoidably embodied (e.g., Smith & Sparkes 2008). Hence, disability narratives are easily treated as the narratives of bodily difference in a narrative circulation dominated by ableism. Nevertheless, relatively little research has been done on ableism and ‘disabled embodiment’ (Loja et al. 2013). This study follows the idea the interaction between bodies and the sociomaterial environment is crucial for understanding disability (Coleman-Fountain & McLaughlin 2013: 135; Freund 2001). Stories can remodify normative ableism and reconstruct available narrative resources in the narrative circulation (Beard 2009; Campbell 2009: 29, 197; Loja et al. 2013; McKenzie-Mohr & Lafrance 2017). In this study, this process is approached through narrative circulation.

Method

The research data consists of narratives from the ‘Life of Disabled Persons in Finland 2013–2014’ project, which were collected by Archive Materials in Traditional and Contemporary Culture [the Archive] of the Finnish Literature Society (SKS) and Kynnys, the Threshold Association. The Threshold Association is a cross-disability Finnish organisation that promotes the human rights of people with disabilities. The main question of the call for life stories was as follows: ‘What is life like for people with disabilities in Finland?’ (SKS 2013). The collection consists of 1797 text pages in Finnish by 37 narrators. The collection is a diverse and heterogeneous set and represents different genres. Texts differ in length and content. Some of the texts are life stories by people with disabilities; others are life stories by non-disabled parents of children with disabilities.

For this study, I collected ableist narratives and started to study them more precisely. The total collected accounts were around 25 pages with font size 12 and line spacing 1.15. I also translated the texts from Finnish to English for this work. I refer to the texts with plain numbers in the following parts. Being part of the Narratives of Bodily Difference research project, this study is linked with my general research interest to critically deconstruct disabling practices. Additionally, from reading previous studies on ableism and disability, I noticed there were not many studies using a narrative methodology and I recognised the potential of the model of narrative circulation in relation to studying ableism.

The collecting of disability narratives by SKS and the Threshold Association can be considered part of the promotion of current disability policy in Finland and the spirit of the Convention on Rights of Persons with Disabilities (CRPD) (UN s.a.). Collecting previously hidden stories will enable a more inclusive narrative circulation. Indeed, in a press release after the collection of these stories, SKS (2014) stated ‘the situation of people with disabilities [in the society] will be improved with life stories’. The organisers of the collection informed the participants their writings would be archived and possibly used in research, and the participants have given their informed consent to the archive. Thus, the ‘Life of Disabled Persons in Finland 2013–2014’ collection is open for research usage but users have to apply for a permit to access the SKS archive.

After the applications of the research team were approved, the data were retrieved from the archive. The originals were photographed in the archive. For improving the usability of the data, all of the photographed texts were typewritten. The data was analysed using the MNC as well as narrative analysis (Hänninen 2004; Polkinghorne 1995; Riessman 2008). The dialogue between the cultural stock of stories and the construction of a narrative was my key theme in accordance with the MNC (Hänninen 2004). Furthermore, I employed narrative methods by plotting the content of the narratives in relation to ableism. In practice, I read the data and noticed some narratives resonated in relation to ableism as it is depicted in the existing body of literature. I read the data in details, collected the prime accounts and organised the accounts thematically by plots (Polkinghorne 1995) according to their relation to ableism. The findings are presented below.

Findings

The narrators concerned ableism as an Othering condition and also met it with narrative resistance. Ableism as an Othering condition occurred as the narrators tried to fit their story in the available ableist narrative or used ableist narrative resources as they tried to make sense of their life events. Additionally, I found acts of narrative resistance. I did not initially read the data with the theory of narrative resistance in mind. But after I noticed this trend and conceptualised it as narrative resistance, I retrieved previous research on the given topic and noticed a connection between the data and the existing literature (e.g., Beard 2009; Coleman-Fountain & McLaughlin 2013: 146; McKenzie-Mohr & Lafrance 2017).

Ableism as an Othering condition

The available resources of the cultural stock of stories influence inner and told narratives as well as the connection to narrative circulation (Hänninen 2004). Due to the dominance of an ableist repertoire in the cultural stock of stories, disability is used to narrate a deviance or an unwanted difference (Campbell 2009: 17; Penketh 2017). That makes ableism an Othering condition. In the narratives, this condition was related as inaccessibility, in which disability was narrated as opposite to able-bodiedness. Furthermore, ableism as an Othering condition was narrated as prejudices and environmental barriers in certain situations. Narrators seemed to negotiate their relation to the available resources of the cultural stock of stories while being ‘enmeshed in a web of ableistic notions and non-disabled normative ideals’ (Svendby, Romsland & Moen 2018: 225).

The first account depicts how ableist narrative forms the conditions of growing up and of identity construction:

It is so sad that children with disabilities are brought up to be disabled. People say to them that they are not able to do this or that because they are people with disabilities. This is how disabled identity is constructed. If you do not disengage yourself from that, you will have disabled identity all your life. … [It is important that] children with disabilities … have occasion to do different things as they want. … Let people find their own solutions…. A child has unlimited imagination. … Denials and comments like ‘you are not able to do it’ are easily etched in children’s memory. This resignation follows you all the time. Then you become easily an outsider in your own life. (69)

The narrator links childhood to the construction of disabled identity. She illustrates how ableism or socially claimed assumptions of being able to do something influences children’s lives and identities. According to the narrator, children with disabilities are often not allowed to do what their peers do. Furthermore, she deliberates upon the conditions of becoming an outsider in your own life. Denials, dismissive attitudes and prejudices construct disability as a negative category of identity (Friedman & Owen 2017; Galvin 2003). According to the narrator, people have to consciously disengage themselves from disabling barriers and attitudes.

The next account highlights Othering experiences in ordinary everyday practices. The narrator waits her turn for the doctor and depicts the situation as follows:

The able-bodied jumped in the queue and I was not able to stand up to them. I experienced the world as a person with disabilities. The able-bodied, who are able to move, do not respect a weaker person but utilise the conditions: they jump in the queue, they stand indifferently in front of you. … It is difficult to sidestep when sitting in a wheelchair. (630)

In this account, the protagonist is symbolically and almost literally walked over. The account reveals an ableist narrative in (at least) two ways. First, the narrator employs an available mainstream disability narrative, which is an ableist one, and depicts disability as ‘deviance’. Disability is narrated with the resources of an ableist normalcy narrative. Second, the narrative illustrates the performance and practice of ableism, in which disability is an opposite category to the socially claimed ableism. Everyday practices in which people with disabilities face otherness can reveal hints of the performance and practice of ableism.

Furthermore, the so-called ableist normalcy narrative influences told narratives in narrative circulation. As one of the narrators says, ‘regardless of all the issues, I was happy that I was able to work. This can be explained only by a need to live normal life for all disabilities. I never wanted to end up outside of the life’ (285). In this account, work and socially claimed normal life are intertwined. The so-called normal life is used as a normative category in which disability is an anomaly. Disability is performed outside the claimed norm. Yet ‘norm’ or ‘normalcy’ is used as a narrative category of a socially claimed life course and ‘end up outside of the life’ due to disability. Disability is narrated against the ableist narrative (Campbell 2009).

The following account illustrates the performance and practice of ableism in relation to common social institutions, such as health care, work life and rehabilitation. According to the narrator, his rehabilitation experience was connected with the normalcy narrative and negative stereotyping:

I understood during the rehabilitation that people with visual disability were considered to do certain work, like wickerwork. I liked that work a lot, but I was not going to do a job that people with a visual disability were assumed to do, like working as a masseur or doing wickerwork. (s.l.)

The narrator was expected to have a socially claimed occupation, but he refused to do a job he was assumed to have to do just because of his disability.

In addition to upbringing and formal institutions, ableism as an Othering condition occurred in relation to general negative attitudes and prejudices. One of the narrators explains his media interview experience in which the interviewers pitied him:

I was interviewed and they [interviewers] felt pity for me. I said that people with visual disability are different from other people. I regretted that immediately. It is always irritating as people with visual disability are assumed to be people who just lack eyesight. I think that visual disability is much more than non-sight. I tried to say something wise, but I could not find the words. (s.l.)

The narrator’s thoughts about blindness correspond with Michael Schillmeier’s (2010), who illustrates how blindness is easily interpreted as ‘non-sight’ because the available narratives are dominated by narratives of sight. However, blindness is not just the lack of physiological eyesight, as Schillmeier (2010: 45) reminds us. Thus, both Schillmeier (2010) and the narrator refer to the conditions in which blindness is ‘a deviance’ against the culturally dominant narrative of sight; therefore, it may lack sufficient narrative resources, and the available resources may be inadequate.

In this data, the practice and performance of ableism were concerned with the body — the tangible, corporeal and lived body. One of the narrators describes how her disability was interpreted against her bodily appearance and an able-bodied figure:

I was born with an impairment but nobody treated me as a person with disabilities on the grounds of my outward appearance. Invisible disability meant more disadvantage than advantage to me. The advantage was that I did not stand out the crowd and I never experienced other people avoiding me due to my disability. … However, my able-bodied appearance [invisible disability] has caused unexpected disadvantages all of my life. … My employers, for example, did not believe that a person who looked so able-bodied could be so often sick, regardless of all the medical certificates I gave to them. Yet, my workmates thought that I was just another lazy person. (9)

The narrator depicts how an able-bodied figure was employed to interpret her agency. This account is closely aligned with the idea of passing—a strategy of drawing a veil over disability or bodily difference (Campbell 2009: 44.) This kind of non-narrativizing often occurs with invisible disabilities. Nevertheless, empirical studies on invisible disabilities in the so-called ordinary conditions of life (e.g., work life) have been rare (Norstedt 2019).

Ableism constructs conditions where disability narratives try to fit into insufficient or oppressive categories, which reproduces cultural stereotypes and feed narrative exclusion (Cockain 2018).

The last account concerns participation in an ordinary culture event. The conditions turned out to be disabling for the narrator who uses a wheelchair:

People with disabilities and ill and older people are deprived of the joy to participate in cultural activities. [Culture events] take place in buildings with stairs. … The able-bodied crowd, they do not sidestep but stand in front of you. You do not see anything. … You have to get used to looking at the backs in front of you. Even though you wait for your turn, you will never get it. New people crowd around you, and you have new backs in front of you. (630)

The conditions are disabling. By illustrating hampering and even excluding conditions, the narrator highlights the practice and performance of ableist narrative. She depicts an inaccessible cultural event; furthermore, she makes a list where ‘people with disabilities and ill and older people’ are put into the same category, which is opposite to an assumed or a socially claimed agential one. Here, the narrator employs an ableist narrative as she depicts disability. By listing different groups of people as an opposite category to an abstract, socially claimed default-agent, she highlights culturally dominant narrative strategies regarding disability. Such narrative strategies used by people with disabilities are an example of internalised oppression (Campbell 2009: 16–29), which refers to conditions in which people with disabilities narrate disability as a non-ability, an unwanted difference and a deviancy. By using narrative strategies of internalised oppression, such as ableism, people other themselves in the narrative circulation as well as in their told story and even in their inner narrative. Therefore, ableism generates an Othering condition for narrating disability and the body. According to Lennard J. Davis (2013: 13), disability goes beyond the very idea of diversity as it is used in contemporary discourse. Davis (2013: 8) argues ‘because disability is tied to this medical paradigm, it is seen as a form of the abnormal, or what I might call the “undiverse”. I say undiverse because diversity implies celebration and choice.’ Davis (2013: 8, 13) continues that disability ‘along with poverty’ goes beyond the very idea of diversity and disability is merely ‘a fixed [social] category’.

Disability narratives are often othered in the narrative circulation due to the available ableist resources and the dominance of ableism in the cultural stock of stories (Campbell 2009: 29, 197). This situation reflects the inadequacy of the available resources regarding disability in the cultural stock of stories. Campbell (2009: 29, 197) has demanded a shift from individual tragedies to ‘communal trauma’ regarding ableism. A more inclusive narrative circulation is needed, in which narrative resistance can be a means for more an inclusive narrative circulation (e.g., McKenzie-Mohr & Lafrance 2017). In this data, narrative resistance against ableism was possible and conscious.

Narrative resistance

Narrative resistance refers to narrative practices and performances that deconstruct (consciously) oppressive practices (Beard 2009; McKenzie-Mohr & Lafrance 2017). It produces (alternative) narrative resources to the cultural stock of stories. Previous research has shown the acts of narrative resistance against ableism by people with disabilities are linked with recognition (Loja et al. 2013: 200). In this data, resistance manifested mainly as an altered body narrative, in which the focus shifted from an individual body to the body in different conditions. Additionally, this altered narrative strategy seemed to be linked with the language of rights.

In the following account, the narrator discusses disability in society: ‘Disability does not have to be a hindrance of experiencing life. A society that recognises human dignity embraces equality. [But] excluded people indicate that community spirit has degraded’ (41). Here, disability is narrated neither as a hindrance nor as an obstacle. The narrator changes the perspective from the individual to the social and approaches disability as a matter of social organisation. Furthermore, the narrator connects recognition and equality, and according to Loja et al. (2013), recognition resists ableist narratives. Narrative circulation concerns both recognition and misrecognition as some of the narratives become normalised. These mainstream narratives are often easier to narrate and receive: as people use mainstream narrative resources, their narratives are easier received by other people. Hence, mainstreaming alternative disability narratives generates more accessible conditions. Narrative resistance was further constructed in the narrators in relation to education, disability services and general cultural assumptions or socially claimed disability narratives part of everyday conditions. These points were described as contexts in which the narrators overcame (dis)ability and difference; they resisted such categorisation consciously and attempted to reconstruct the available narrative resources.

One of the narrators describes how children with disabilities were not allowed to go to regular school:

In those days, some of the people were not allowed to go to regular school. From my perspective, it was more a denial of educational rights than a release. … However, I went to a special school. Nowadays the name of the school is removed and it contains no more [stigmatizing] epithets. (47)

By drawing from rights-based narratives, this account illustrates how the practice and performance of disability in society can be remodified. According to Clive Baldwin (2008: 226), ‘policy narratives are also (or can be, if not should be) narratives of social inclusion, establishing spaces in which identities of belonging and participation are both desired and encouraged’. The relationship between policy narratives and the construction of individual narratives (e.g., life stories) is illustrated with disability services and other societal practices (Baldwin 2008: 226–227). Accessing disability services is also part of contemporary disability narratives, as illustrated below:

In those days, I had my first collision with disability services: … my applications were denied. According to [the reasons], I was not disabled enough. That was not easy for me. … A doctor said to me that ‘you are too able-bodied to be a person with disabilities’… Yet I have noticed that some other people may discriminate whatever you do. It could be a consequence of fear or jealousy or whatever, but it is always nasty. … Though it is often generalised that people with disabilities are easily excluded from a society ruled by the able-bodied majority, I think I’m included in the society with the exception of the bureaucracy. (529–531)

His body was labelled with epithets, such as ‘too abled-bodied’ and ‘not disabled enough’. The narrator depicts a collision between the lived body and the logic of the ableist narrative. In the account, the body that is ‘not disabled enough’ collides with the given discursive and material conditions. The narrator concludes by reflecting upon ableism and the construction of inclusion. According to the narrator, the practices of inclusion are ruled by ‘the able-bodied majority’, but he feels that he is included in the society ‘with the exception of the bureaucracy’. Respectively, Lennard J. Davis (2013: 8) argues ‘to be disabled you don’t get to choose. You have to be diagnosed, and in many cases you will have an ongoing and very defining relationship with the medical profession’.

Another point of narrative resistance is to distinguish the objectified and quantified body from the lived one:

I want briefly define the concept of capability. … The maintenance of work capability contains many things, e.g. work and social environment as well as the current economic conditions in the society. … Eventually, I understand my own relation to my capability. [I have] better [capabilities] than just my measureable ability to make particular physical movements. … As studying or working, I forget the physical limitations of my agency. (235)

The narrator distinguishes her capabilities from ‘measureable ability to make particular physical movements’. She narrates her capabilities as embodied and embedded in sociomaterial and narrative conditions, which she seems to exercise deliberately. Embodied agency is narrated here in opposition to ableist logic. The narrator draws a distinction between the body as a physical object and the lived body in socio-material conditions. Their capabilities in sociomaterial conditions and the available narrative resources to them in the cultural stock of stories steer the formation of the told and inner narrative. Here, the dominance of ableist narrative in the narrative circulation is resisted with the narrative of the situated body in the conditions.

The ableist conception of disability as a limiting condition was resisted in the data, as some of the narrators chose to narrate against this conception. The following account concerns a conflict between the narrator’s experience and a socially claimed ableist narrative of agency:

As I walked with the walker for the first few times, people asked me, ‘how have you become so feeble?’ I think that the walker helped me – I was able to go out from my home [with the walker]. However, people did not understand my point. They think that very old and feeble people used walkers. Over the time, other people started to understand it. (521–522)

The narrative deliberates critically upon cultural assumptions that link feebleness and helplessness to disability (also Ahlvik-Harju 2015). The narrator considered the walker as a help; whereas, others saw it as a sign of feebleness. In this account, the cultural assumption of feebleness is connected with two groups of people: people with disabilities and older people. The narrator deconstructs ableist assumptions of feebleness and agency. Furthermore, walking has been recognised as a core practice of the so-called normal (Campbell 2009: 143). The term ‘walkism’, also known as the so-called politics of walking, has been coined to illustrate (‘in a satirical fashion’) how the walking-based ideal steers societal practices (Freund 2001: 695–696; Oliver 1996: 96–108).

The next account concerns negative attitudes faced by people with disabilities. The narrator critically discusses ableist narrative repertoire. According to one of the narrators, ‘we will all lose much if people with disabilities are excluded in the society. … There are smart, capable people who face barriers and prejudice due to disability. No two are alike. Nobody walks, thinks and talks the way you do’ (69). By drawing on the ideas of recognition and inclusion, this narrator seems to confront ableist narrative with the pluralistic argument of difference. This narrative practice aligns itself closely with anti-oppressive practices (e.g., McKenzie-Mohr & Lafrance 2017: 199–202). Disability policy narratives and the rights-based approach on disability were used as empowering narrative resources in the data. One of the narrators, for example, found ‘his way’ in a disability policy organisation:

A person with brain injury is not necessarily different from the so-called normal majority. … My life continued slowly … but I sensed that something unavoidable was coming close to me. … My way began and it has continued since that I have become an activist in this disability policy organisation. (529–531)

This narrative challenges an ableist narrative of bodily difference and is fastened on the disability policy narrative. The narrator critiques ‘the so-called normal majority’ and refuses ‘difference’ in his narrative. Correspondingly, Lennard J. Davis (2013) argues disability goes beyond contemporary diversity and difference narrative due to the dominance of medical-based understandings and also because it goes beyond the idea of choice: ‘it is not chosen and therefore it is outside of the dominant ethic of choice’ (Davis 2013: 14). Nevertheless, Davis says this makes disability ‘the ultimate modifier of identity’ because it concerns ‘being one with oneself’ and is ‘the foundation of difference’ (Davis 2013: 14). The contradictory circulation of ‘difference’, disability and identity is connected with the available narrative resources in the narrative circulation.

In this data, ableist narratives were deconstructed by narrating the lived body in sociomaterial, as well as discursive, conditions and by resisting the available ableist narrative resources of the cultural stock of stories. The following account highlights the narrative resources of disability policy and depicts bodily agency in relation to the given sociomaterial conditions. Yet it also concerns negative attitudes and socially clamed disability narratives. According to the narrator,

People marvel at my attitude towards life. They compare their own life against their conception of my life. They had biases towards my life, but they did not know my life at all. Sad to say, their conceptions are usually very wrong. A wheelchair is not a hindrance: it may be tardy [in the material environment]. If society and environment are made accessible for wheelchair users, this obstacle is removed. An accessible environment is good for everyone. (77)

The narrator explores disabling sociomaterial conditions as well as the inadequate resources of the cultural stock of stories. Accessibility is the key word of her narrative of resistance. She employs the resources of contemporary disability policy narratives, which reconstruct the available narrative resources in the narrative circulation of disability. Sociomaterial and narrative conditions are entwined in her conclusion: ‘Accessible environment is good for everyone’.

Discussion

This paper has documented the narrative circulation of ableism as an Othering condition that makes someone an outsider in their own life. The Othering condition can be resisted, but resistance seemed to demand conscious disengagement from the culturally dominant disability narrative or the socially claimed assumptions of being able to do something. This paper’s findings correspond with Ema Loja et al.’s (2013) notions of disability and the body. People with disabilities negotiated their relation to the available narrative resources concerning disability. The use of the dominant disability narrative, which is the ableist one, caused an Othering condition in which the narrators othered themselves in their told and lived stories and even in their inner ones. Narrative Othering can be understood in terms of ‘internalised oppression’ (Campbell 2009: 16–29), which means that people adopt oppressive discourses in their inner story and depict themselves as ‘Other’. From a narrative perspective, internalised oppression excludes people from their own story and the wider narrative circulation. Yet this feeds narrative oppression when disability is re-constructed as unwanted difference and causes Othering, even excluding, condition for people with disabilities.

Oppression can be direct or indirect when it occurs as disabling everyday practices and encouraging negative stereotyping (Fricker 2007: 58; Young 1990). As disability is considered ‘a state of abjection or a condition in need of medical repair or cure’, a negative identity is labelled (Davis 2013: 9; Fricker 2007: 29); such a labelling employs the dominant disability narrative in which disability is individualised to a pathologised individual body. In this data, this was discussed as an ableist Othering condition, which was also resisted. The findings signalled narrative resistance and highlighted alternative disability narratives. The key point was a transformation from ‘an object’ of Othering conditions to ‘a subject’ of narrative resistance. The narrators employed a rights-based disability narrative and resisted the dominant ableist disability narrative. Narrative resistance was conducted by narrating the body in relation to lived conditions or the given conditions of life. As noted in the previous studies on narrative resistance (e.g., McKenzie-Mohr & Lafrance 2017), the narratives of individual pathology like the individual narrative of disability are often oppressive but hold established narrative power.

The findings can be described in terms of epistemic injustice, which refer to testimonial and hermeneutical injustice (Fricker 2007). Testimonial injustice was indirect: it seems that the narrators took on the role of ‘disabled narrator’ as a way of getting their stories heard because the story of disability is supposed to be heard in a certain, ableist way. However, hermeneutical injustice was more direct and occurred because of insufficient or inadequate narrative resources. Miranda Fricker (2007: 6) called this hermeneutical marginalisation, in which some people ‘participate unequally in the practices through which social meanings are generated’. According to her, hermeneutical marginalisation is ‘a situated hermeneutical inequality’ where the social situation ‘is such that a collective hermeneutical gap prevents’ some people ‘from making sense of an experience’ (Fricker 2007: 7, 152–161). Moreover, Lennard J. Davis (2013: 7) argues ‘disabled bodies are, in the current imaginary, constructed as fixed identities’, and because they are ‘fixed identities’, people who narrate disability are assumed to narrate in accordance with the dominant disability narrative.

The lived body is a matter of social organisation; narrative circulation constructs the social organisation in which disability is lived and told. As a dominant part of narrative circulation, ableism produces disability narratives as deviant and as an example of unwanted difference. Although ableism as an Othering condition tends to internalise oppression (e.g., Campbell 2009: 16–29), narrative resistance aims to externalise repression (e.g., McKenzie-Mohr & Lafrance 2017: 199–202). Turning the gaze from the individual, often bio-medicalised and pathologised body, to the sociomaterial and narrative conditions that embed lived corporality facilitates disability narratives that disengage themselves from an ableist straitjacket. According to Rosemarie Garland-Thomson (2002: 5), disability is ‘a culturally fabricated narrative of the body’; thus, rights-based narratives, as well as more diverse ones, are crucial for different ‘bodies’ in social and political configurations.

The main limitations of the study are as follows: The research data consists of responses to this given data collecting project. This kind of data collecting method has some specific limitations. First, the collector organisations’ announcement steers and directs the construction of narratives, and second, the situation of narrating is simultaneously both private and public (Pöysä 2006: 229). However, this situation allows participants to re-write and reflect upon what they want to share with others in their narrative. Although the calling announcement included a notice stating participants could ask somebody to assist them in their writing or could interview them (audio record), most of the participants decided to write by themselves (SKS 2013). However, the participants represented a heterogeneous group of people with disabilities.

Conclusion

Narrative circulation reveals the practice and performance of ableism. By investigating the interaction between individually told stories and the socially shared world of stories, ableism can be tracked. Life stories by people with disabilities resisted ableism (as an Othering condition). According to Clive Baldwin (2008: 224), ‘collective narratives, often realised in social policy, create the space within which individuals exercise their citizenship rights’. This paper suggests more inclusive narrative circulation can be promoted by reconfiguring disability narratives that have been dominated by ableism. The more inclusive the narrative circulation is, the more narrative resources become available.

Disability narratives can be remodelled along with collective storytelling and sharing. Inclusion in narrative circulation concerns power and recognition; some of the stories empower; whereas, some of them oppress (Baldwin 2013: 39–40; McKenzie-Mohr & Lafrance 2017). Narrative resistance against ableism can be part of a collective disability narrative in which disability as political and social matter is exercised. Further empirical research needs to investigate the joint effects of material and discursive conditions in the narrative circulation of disability.

Funding Information

This work was supported by Academy of Finland (grant number 299172).

Competing Interests

The author has no competing interests to declare.

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