Life-writing is a vital feature of the disability rights movement: it emerged alongside disability rights activists’ advancement of the social model of disability, as activists used their personal experiences of marginalisation to demand political rights, not medical cures. This version of life-writing is similar to the sociological method of autoethnography, in which the researcher analyses personal experience to understand broader societal patterns (Anderson, 2006; Holman Jones et al., 2013). In feminist disability studies, the trend continues. Scholars interweave autobiographical stories to dismantle the belief that disability equals tragedy (Thomson, 2002, p. 28; see also Thomson, 2005). But while feminist disability scholars use autoethnography to challenge ableist stereotypes, certain strains of life-writing in feminist disability studies tend to calcify the difference between abled and disabled identities. If the field of feminist disability studies aims to destabilise this binary—which indeed it does—then it needs to leverage autoethnography differently, telling stories that resist a univocal model of disability.
Autoethnography in feminist disability studies can contribute to ongoing debates in feminist methodologies, but how we incorporate autoethnography will depend on our objectives. We may use autoethnography to solidify a disabled community or, conversely, to challenge the division between ability and disability (Mitchell, 2000, p. 311). Drawing on prominent work in feminist disability studies, I explore how these underlying differences give us two different ways to challenge exclusion.
When scholars aim to unify disability, they depict disability as a valuable way of being in the world and situate overcoming societal prejudice as the primary means to improve the quality of life for disabled people. In the first part of the paper, I show how they also tend to portray attitudes toward disability as a straightforward dichotomy: nondisabled people presume that disabled people would be better off dead or they embrace disability as a valued aspect of human diversity. I connect these scholarly examples to the End the Awkward campaign in the UK, in which short videos show how nondisabled people overcome ableist prejudice. Like the examples from feminist disability studies, the campaign dichotomises ableist misunderstanding and disabled empowerment. This framing is important as it enables us to build a disability community that can counter ableist assumptions. Yet this treatment of disability evades more ambiguous relational dynamics.
The second part of this paper turns to new developments in feminist disability studies that make ambiguity central to experiences of disability and thereby unsettle disabled/abled binaries. These approaches chart a different course through ableism—one that embraces relational discomfort rather than a good/bad dichotomy. These stories follow Alison Kafer's (2013) suggestion of a relational model of disability, in which we produce disability in our everyday interactions and discourses. Critical autoethnographic methods play a role in this story too, as the authors disclose how the meaning of disability shifts as they enter different contexts and new relationships.
These two autoethnographic approaches in feminist disability studies map onto two distinct theoretical approaches: the social model of disability and critical disability studies. The social model emerged from disability rights activists in the twentieth century; they disentangled the concepts of ‘impairment’ and ‘disability’. Social model adherents argued that impairment refers to embodied effects, such as not being able to see, hear, walk or remember, whereas disability captures societal barriers and oppression, such as the lack of accessibility, prejudice and negative stereotypes (see Charlton, 1998; Shakespeare, 2006; Linton, 2007). Challenging ableism means understanding that the problem is society, not the body. This approach unites disabled people around shared oppression and is reflected in national policies like the US Americans with Disabilities Act and the UK Disability Discrimination Act (Shildrick, 2015).
In the insistence that appropriate accommodations can enable disabled people to be productive citizens, however, social model adherents erase the experiences of disabled people who fail to live up to the new ‘able-disabled’ standard (ibid.). Hence, critical disability scholars trouble the dichotomy between impairment and disability, as well as the line between ability and disability (Davis, 2002; McRuer, 2006; Mitchell and Snyder, 2006). In part, they do so by writing about their lived experiences with pain, suffering and ambiguity. As I will argue in this paper, it is important that feminist disability studies scholars use life-writing to both build and destabilise categories of disabled identities, while simultaneously acknowledging the tensions that emerge from these two methodological approaches.
Autoethnography as a Feminist Disability Method
The sociological method of autoethnography and feminist methodologies have much in common: each aims to validate women's experience, reject hierarchies between the researcher and research participant, and embrace an explicit goal of transformation (Holman Jones et al., 2013, p. 24; see also Ellis and Bochner, 2006; Anderson and Glass-Coffin, 2013; Douglas and Carless, 2013). Like feminist methodologies, the field of autoethnography varies from evocative to analytic. For some, autoethnography is ‘not simply to document personal experience [or] evoke emotional resonance with the reader [but rather] to gain insight into some broader set of social phenomena’ (Anderson 2006, p. 387). Others, like Carolyn Ellis and Arthur Bochner (2006, p. 433), argue that autoethnography ‘wants the reader to care, to feel, to empathise, and to do something, to act’. These distinct purposes resonate with feminist methodologies, as feminist researchers share a commitment to self-reflexivity (Inckle, 2015), sociological analysis and social justice (Ackerly and True, 2006).
Likewise, feminist disability studies scholars combine personal experience and sociological analyses to advocate for social justice. Indeed, central texts in disability studies combine sociology with autobiography, such as Irving Zola's Missing Pieces (1982) and Robert Murphy's The Body Silent (1987). Disabled women played an important role in this trend as well, as they highlighted the ways in which disability and gender intersect. According to Rosemarie Garland Thomson (2005, p. 1560), ‘The immediacy of personal narrative conveys disabled women's distinct perspectives on sexuality, reproductive issues, appearance biases, and other shared struggles’. In her article ‘Feminist disability studies’, Thomson (ibid.) provides an excellent history of the genre of disabled women's autobiography, which she charts from the 1980s. Similarly, many feminist disability scholars describe their own experience of being or becoming disabled to show how personal experience counters dominant ableist norms, although they may sidestep naming this framework as autoethnography (for an exception, see O'Toole, 2013).
Because ableism and sexism intersect to construct disabled women as asexual, miserable and powerless, life-writing is especially useful because it empowers disabled women to tell their own stories that counter sexual and ableist marginalisation. For Susannah B. Mintz (2007, p. 7), disabled women's narratives ‘fundamentally change the way we think about gender and disability, impairment, disease, and ageing, as well as about the supposedly normal body’. We find personal narratives in the work of prominent feminist disability scholars Rosemarie Garland Thomson (1997), Eva Feder Kittay (2009) and Alison Kafer (2013).
These feminist disability scholars situate autoethnography in different philosophical frameworks: Thomson (2005) in the social model of disability, Kittay (2009) in feminist care ethics, or Kafer (2013) in queer and crip theory. But they share a normative commitment to revalue disabled lives with a feminist lens, which they punctuate with their own confrontations with ableism. As I will argue, these autoethnographic elements—while vital—may reinforce a univocal narrative about the experiences of disability and ableist oppression. In this narrative, the scholar is the disability rights protagonist fighting against a hostile ableist audience. This disabled protagonist finds solace and strength in a unified disability community. Though these stories are important for building disability rights community and revealing entrenched ableism, they may silence other disability experiences that violate this narrative (Couser, 2000; Mitchell, 2000; Walmsley, 2001; Shildrick, 2015).
Rosemarie Garland-Thomson: Fun and Feisty Life-Writing
Rosemarie Garland Thomson (2002, 2005) has spearheaded the recognition of feminist disability studies as a unique field with a distinct methodology. The aims of feminist disability studies, for Thomson, are to counter prejudice, understand disability as a political issue, and to build a shared community. According to Thomson:
Feminist disability studies wants to unsettle tired stereotypes about people with disabilities. It seeks to challenge our dominant assumptions about living with a disability. It situates the disability experience in the context of rights and exclusions. It aspires to retrieve dismissed voices and misrepresented experiences. (Thomson, 2005, p. 1557)
In her overview of the history of feminist disability studies, life-writing by disabled women features prominently (Thomson, 2005). But in fusing normative aims to methods, Thomson takes a dangerous turn, as she recognises feminist disability studies only as narratives that reinforce the social model of disability.
Thomson (2002, p. 21) names life-writing by disabled women ‘sitpoint theory’, drawing attention to the importance of disabled women's experiences for theory-building and, also, challenging the implicit ableism behind the feminist mainstay of ‘standpoint’ theory. Sitpoint theory fits within a framework of feminist methodology that, according to Thomson (ibid., p. 28), ‘asks difficult questions, but accepts provisional answers; … recognises the power of identity, at the same time that it reveals identity as a fiction; … seeks equality, and it claims difference, … writes new stories and recovers traditional ones’. Thomson's description of feminist methods suggests a broad and provisional account of identity.
Yet, to define the field of feminist disability studies, Thomson selects life-writing that conforms to normative values embedded in the social model of disability: that recognises disabled people as a political category; that insists that disabled people have a shared culture; that disabled people are best equipped to speak for themselves; and that disability is a valuable way to be in the world. For instance, appropriate life-writing by disabled people is that which affirms sexuality and community (Thomson, 2007). Thomson's retrieval of disabled women's voices, who celebrate and politicise disability, remains vital and radical. Yet, we may worry about what gets lost in this celebration.
Specifically, I am concerned for what we lose when we insist on desiring disability. For example, Thomson uses the documentary film Murderball (2005) as an example of the kind of narrative feminist disability studies should tell. The documentary tells the story of a group of Paralympic rugby players and Thomson (2007, p. 15) argues that it ‘invites us to relish along with the players how adaptability and innovation produces a new sport—quad rugby—to which their new bodies are perfectly suited’. The film thus celebrates the men's sexuality and athleticism and ‘contradicts the usual stories of misery, diminishment, and calamity’ (ibid., p. 114). Yet, Thomson (ibid., p. 122) relegates to footnotes moments in the film that document an athlete's demeaning treatment of the Special Olympics and his characterisation of these athletes as ‘retards’.
Albeit just a footnote, Thomson's choice to emphasise disability solidarity over internalised ableism highlights the danger in fusing a feminist disability studies methodology to the social model of disability. Here we see how a dominant narrative that makes disabled people protagonists against a hostile ableist world silences moments that resist this easy dichotomy. Telling ‘fun and feisty’ stories about disabled people's sexuality and sense of community unsettles tired and ableist stereotypes, but it also risks ignoring the ways in which disabled people gain a sense of community by maintaining prejudice against other disabled people (Campbell, 2008).
Eva Feder Kittay: The Battlefield
Eva Feder Kittay (2009) writes about mothering Sesha, her daughter with developmental disabilities, and she uses her experience to advance a feminist ethic of care. In contrast to Western philosophers who base human status on the ability to reason, Kittay argues that shared human vulnerability makes us equally human. Kittay (ibid.) describes the philosophical discipline as a ‘battlefield’, as she negotiates expected and unexpected landmines. For Kittay, her philosophical battle is part of the care work she provides for her daughter, as mothers of children with disabilities must work to change societal norms to provide a good life for their children. In doing so, she repeats Thomson's binary representation between ableist prejudice and activists’ celebration. Casting ableist prejudice as a battlefield may resonate with personal experience, but it may overshadow other forms of implicit ableism.
As autoethnographers suggest, Kittay retools abstract philosophical text into a story filled with dialogue, self-reflection and emotion. In her article ‘The personal is philosophical is political’, she analyses her conversation with Peter Singer and Jeff McMahan—both of whom advocate for the moral superiority of nonhuman animals over people with intellectual disabilities (ibid.). ‘So there I was’, writes Kittay (ibid., p. 607), ‘(i)n a roomful of distinguished philosophers at a workshop in Atlanta, Georgia’. She plays with the form philosophical argument should take, narrating the conference transcripts with her emotional reactions. In reading McMahan's (2002) text in which he claims killing an intellectually disabled person is not the same as killing ‘one of us’, Kittay (2009, p. 608) writes, ‘I try to keep my arguments tight, my interpretations clean and correct, my reasoning clear of the emotional turmoil I feel’. Kittay's self-reflections enable us to see how disciplinary norms that prioritise reason over emotion enforce an inauthentic self-presentation, in which emotions threaten to undermine professional esteem.
In the conversation, Kittay draws on the example of her daughter to explain why defining being human through rationality is inadequate. By investing the philosophical and professional conversation with her personal life, Kittay alters the norms under which philosophy should take place, which McMahan rejects. McMahan says to Kittay, ‘I think that Peter and I engage in a fair amount of voluntary self-censorship. I'm trying very hard not to say anything offensive, something hurtful. I'm profoundly averse to making people miserable’ (Kittay, 2009, p. 622 quoting McMahan). Kittay's article exposes the absurdity of these sentiments: how can philosophers question the human status of people with intellectual disabilities and not be hurtful?
If Thomson (2007) overlooks evidence of ableism to maintain a unified disability community, then Kittay's metaphor of a battlefield may make us overlook our own internalised ableism. If ableist prejudice is a battlefield in which ‘we’ must win for ourselves and the people we love, we may feel compelled to overemphasise the positive qualities of people with disabilities, thus creating disabled people as a one-dimensional category that evades their diversity and complexity (Walmsley, 2001; Simplican, 2015a). Loving someone with a disability or having a disability does not foreclose the possibility of prejudice, particularly implicit negative attitudes (Mitchell and Snyder, 2006). If readers identify as being members of the good fight, they may deny their own ableist behaviour (Dumbleton, 2013).
Alison Kafer: Cripping Autoethnography
Kafer's (2013) Feminist, Queer, Crip invites readers to go beyond the social model of disability by advancing a political/relational model of disability. ‘Disability is experienced in and through relationships; it does not occur in isolation’ (ibid., p. 8). Kafer's adoption of crip and queer theory steers the field of feminist disability studies forward, providing the field with a more provisional and contested understanding of disability. Her personal narrative, however, suggests that it may be easier to write about theoretical ambivalence than lived experience.
Kafer (ibid., pp. 1–2) offers multiple examples of ableist prejudice from her own life: a doctor who suggested that she abandon her plans for graduate school and move in with her parents; physical therapists who envisioned a future of isolation, depression and addiction; fellow rehab patients who advised suicide; and a professor who interpreted her interest in disability studies as untreated psychic pain. Fortunately, Kafer's friends and family embraced a different vision for her after the onset of disability, ‘refusing to accept ableist suggestion that disability is a fate worse than death or that disability prohibits a full life’ (ibid., p. 2). Kafer (ibid.) describes other disabled people as the ‘most vocal in imagining my future as ripe with opportunities’. Kafer's (ibid.) analysis echoes Thomson's fun and feisty stories, ‘of lives lived fully, and my future, according to them, involves not isolation and pathos but community and possibility: I could write books, teach, travel, love and be loved’. These encounters with prejudice and affirmation are powerful. And they surely resonate with similar experiences across the disability community.
The dichotomous treatment of loathing or celebrating disability that opens Feminist, Queer, Crip contrasts with Kafer's (2013) analysis of disability within of crip theory. Disability is a contested concept, which ‘entails departing from the social model's assumption that ‘disabled’ and ‘nondisabled’ are discrete, self-evident categories, choosing instead to explore the creation of such categories and the moments in which they fail to hold’ (ibid., p. 10). She recognises that many people with disabilities do not identify as disabled; that nondisabled family members and friends share in the disability experience; and that disability activists’ embrace of the term ‘crip’ may not extend to people with intellectual disabilities (ibid., p. 17). For Kafer (ibid., p. 10), ‘Recognising such moments of excess or failure is key to imagining disability, and disability futures, differently’. Here, Kafer accepts the instability of communities and identities.
Sometimes Kafer's analysis of crip theory falls back on the familiar dichotomy between disabled and nondisabled attitudes. Crip, according to Kafer,
has much currency in disability activism and culture but still might seem harsh to those outside those communities. […] It recognises the common response of nondisabled people to disabled people, of the normative to the deviant—furtive yet relentless staring, aggressive questioning, and/or a turning away from difference, a refusal to see. (ibid., p. 15)
Kafer constructs opposing communities that inhabit two distinct categories, which either affirm or fear the experience of disability. Here we see again the options for nondisabled people: embrace or fear disability. But in an ambivalent terrain of crip theory, surely the nondisabled category is no longer so discreet, nor the disabled response as cohesive.
In summary, Thomson (2005), Kittay (2009), and Kafer (2013) use life-writing to advance their theoretical understandings of disability as well as the broader field of feminist disability studies. These writings are essential and the ideas they forward remain politically imperative. Reclaiming a disabled identity and community is not just a theoretical enterprise, but also a vital way to stay alive, particularly as disabled people are dying from austerity measures (Shildrick, 2015). Life-writing can help us claim disability and life itself. Yet, depicting prejudice as a battlefield or a stable binary between acceptance/ loathing may be unhelpful to changing attitudes, particularly as research finds that most people—abled and disabled—harbour ableist prejudice (Ostapczuk and Musch, 2011). Moreover, this dichotomous presentation of disability may silence alternative ways of being in the world—ways that are more ambivalent, less praise-worthy, and which resist easy coherence into a unified disabled community.
End the Awkward Campaign
Moving away from a flat good/bad dichotomy of ableism or acceptance is part of what motivates the UK disability charity Scope's End the Awkward campaign.
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According to a report produced by Scope, two-thirds of British people admitted feeling ‘uncomfortable talking to disabled people’, and ‘many worried that they will seem patronising or say the wrong thing’ (Aiden and McCarthy, 2014, pp. 3, 7). Young people (ages 18 to 34 years) ‘are twice as likely as older people to feel awkward around disabled people’, many of whom avoid conversations to escape their sense of discomfort (Scope, 2014). If awkwardness fuels ableism—not just blatant hostility—then we may need to rethink the battlefield strategy and metaphor.
Before looking at Scope's End the Awkward campaign more specifically, it is important to acknowledge that my use of Scope is an awkward move itself. Disability rights activists criticise Scope as a paternalistic and multimillion-dollar charity that predominately employs able-bodied people in its leadership (Vanhala, 2011, pp. 181–184). Moreover, activists attacked Scope's End the Awkward campaign because it overlooked life-threatening issues like hate crimes and budget cuts (Pring, 2015). These are important criticisms. Yet it may be that awkwardness and hate crimes both share a deep anxiety for embodied difference and debility (Shildrick, 2015; Simplican, 2015b).
Scope's End the Awkward campaign confronts this anxiety through humour—an affective register that may enable us to sit long enough with our ableist anxiety to actually see it as a problem (Simplican, 2015a). The End the Awkward campaign includes one-minute videos showing how nondisabled people navigate ableism. The comedian Alex Brooker narrates the scenes, providing the viewer with a disabled person's ‘fun and feisty’ interpretation of the nondisabled character's confusion. Two of the videos take place in employment settings and another takes place in a bar, thus taking on two areas of life that people with disabilities are either under-represented (employment) or presumed absent (sexuality). My favourite video begins with the caption ‘The Awkward “I've bent down to a wheelchair user, now what?” Situation’. A white middle-aged man stands hunched over with his hands on his thighs and an over-gleaming grin frozen onto his face. Brooker walks into the frame to narrate this workplace scene in which co-workers meet for the first time. As he narrates, the scene pans out to encompass a woman in a wheelchair, waiting apprehensively. ‘Look at that face’, Brooker says as he turns to the man hunched over:
He's clearly not trying to be anything but polite. But she's still thinking, ‘Are you going to stay there all day?’ So, now what? Stay as he is? Hop on her lap? Get down on his knees? Or stand up and speak to her like anyone else?
The scene then bustles into life: the man stops stooping and the two begin conversing in a friendly manner. ‘Good move’, Brooker concludes.
Two other End the Awkward videos, ‘How do I shake a hand that isn't there?’ and ‘Is this another crushing rejection or is she deaf?’, play out in a similar manner. Each begins with the nondisabled person's frozen awkwardness; then enters Brooker with his playful banter; and finally the scene unfolds without awkwardness. In line with the campaign's aim to reach younger people, viewers can take an Awkwardness quiz online, the results of which they can post to their Facebook page, or tweet with the hashtag #endtheawkard. Visitors to their website can also view videos of disabled people describing their experiences with awkwardness or post their own stories on Scope's blog, which covers topics like invisible disabilities, sex and inaccessible toilets.
The campaign both complies with and breaks against the typology of celebrate/prejudice found in some strains of the social model of disability. On one hand, the videos follow the familiar binary of ‘out’ and ‘in’: the clueless nondisabled person confronts the in-the-know disabled protagonist. Here, the binary between disabled and nondisabled is clear. In addition, the videos suggest that a little bit of humour and knowledge move the nondisabled ignorant into the framework of acceptance. Stand up straight, shake with your left hand or gently tap a person on the shoulder, and you can exit the ranks of prejudice and hop on the fun and feisty bus. On the other hand, the campaign also challenges this dichotomy by inserting relational ambivalence—an attitude neither celebratory nor loathsome. Scope's choice to navigate awkwardness with humour invites people to laugh with Brooker, rather than scorn the wrongdoer. This ambivalence, however, is short-lived, as the handshake, tap and unstooped posture restore comfort rather quickly. Some feminist disability studies scholars are taking similar moments of ambivalence, but rather than following Scope's quick-fix resolution, they prolong their exploration of ambiguity as an essential component of disability and feminist disability studies.
Embracing the Awkward in Autoethnography
I find clues for how feminist disability studies can embrace the awkward in qualitative methodologists who argue that researchers should cultivate an ‘estranging sensitivity’ (Hall et al., 2008, p. 1022). An estranging sensitivity captures how engagement with others makes us ‘learn to defamiliarise ourselves from what we take for granted’ (Brinkmann, 2014, p. 724). A methodological stance of estrangement runs through disability studies. Johnson and McRuer (2014, p. 130) describe disability life-writing that aims at ‘knowing and unknowing disability, making and unmaking disability epistemologies, and the importance of challenging subjects who confidently ‘know’ about ‘disability’, as though it could be a thoroughly comprehended object of knowledge’. Life-writing in feminist disability studies can promote an estranging sensitivity to the disabled/ abled binary, seizing moments of ambivalent ableism to unknow disability and subjectivity.
Estranging sensitivities in feminist disability studies take on many forms. The experience of disability estranges a person from commonplace assumptions. For Kittay (2009), mothering her disabled daughter estranged her from dominant assumptions in Western philosophy that base personhood status on the ability to reason. Her sense of estrangement is ongoing, as her new sitpoint to affirm disability makes her question constantly if she should persist in philosophy—a world now made entirely strange. Disability thus becomes a lens that estranges prior knowledge, revealing ableist assumptions everywhere. In this light, it clarifies why many feminist disability studies scholars begin scholarship with a description of their relationship to disability—whether their own or someone else's—because it also charts their path through estrangement.
But self-disclosure of disability also accomplishes another form of estrangement: it defamiliarises the reader's sense of authorial legitimacy. By beginning texts with self-disclosure, feminist disability scholars subvert ableist claims that disabled people are incompetent (Kafer, 2013). Margaret Price (2011, p. 2), for instance, begins Mad at School with this disclosure: ‘I am crazy (although I don't usually use that word to refer to myself), and I make my living by using my mind’. Price estranges us, first, by disclosing an identity highly stigmatised and, second, by asserting her claim to knowledge creation.
Thomson's (2007, p. 120) celebratory tone to disability—her description of the euphoric dancing at the Annual Conference for the Society for Disability Studies—is similarly aimed at cultivating an estranging sensitivity to medical discourses that presume disabled people are miserable and better off dead. As Thomson (2005, p. 1557) describes, feminist disability studies packs a ‘vigorous critical punch’, because it must: ableism is so embedded that—faced with data that disabled people actually lead fulfilling lives— nondisabled people simply disbelieve it (Scully, 2008). Rather than a self-reflexive take on estrangement, this line of feminist disability studies aims to cultivate the readers’ estranging sensitivity.
Estrangement also occurs relationally in regards to disability, as the End the Awkward campaign captures humorously. Scope's ‘The awkward “I've bent down to a wheelchair user, now what?” situation’ video depicts the relational estrangement that happens in everyday encounters with disability (on everyday encounters with people with intellectual disabilities, see Bigby and Wiesel, 2011). In a sense, however, all of the estranging sensitivities have a relational dimension, as we are always made strange in relation to something: our past, the reader, academic disciplines or a new co-worker. Estrangement thus circulates in feminist disability studies; the question becomes, how do we cultivate an estranging sensitivity? In the following section, I draw on examples to show how authors cultivate estrangement through autoethnography.
Estranged from Disability Communities
In an autoethnography of her fieldwork interviewing other women with physical disabilities, Julie-Ann Scott (2013) offers us an example of how a researcher can disclose a disabled identity and, at the same time, trouble the stability of disability communities. Scott's article ranges widely: reflections on her self-presentation as a college instructor, the pain of childhood surgeries, and excerpts from interview transcripts. Scott refers to her article as a ‘reflexive autoethnography’ following the work of Ellis and Bochner (2000), in which she uses her ‘life story to look more deeply at self-other interactions’ (Scott, 2013, p. 103 quoting Ellis and Bochner, 2000, p. 47). According to Scott (2013, p. 103), ‘My participants’ responses to me call me to question the ‘insider’ status within the disability community I have always enthusiastically claimed’. In a relational model of disability, Scott estranges us from the ranks of insider/outsider.
Like Scope's campaign, Scott uses personal narrative to disclose her own confrontations with awkwardness. She describes how undergraduate students asked questions about her disability, prompting Scott (ibid., p. 102) to ‘end the awkward’ by explaining her disability as easily managed and avoiding any reference to pain. Another student writes a poem to Scott (ibid., p. 103), describing his desire to heal her, making her feel awkward in an entirely different manner. These moments reveal how the intersection of gender, appearance, sexuality and disability make Scott approachable, sexualised, and gendered in a normatively desirable way.
Differences in sexuality and embodiment affect how Scott's research subjects perceive their relationship to her. For example, Scott (2013) intersperses her interview transcript with Farrah with her own unspoken reactions. Like Scott, Farrah is a professional woman with cerebral palsy, but unlike Scott, Farrah did not have the femur bone rotation surgery that straightened Scott's back and legs. After seeing Scott's fiance kiss her before the interview, Farrah states, ‘we have the same thing, but we're nothing alike’ (ibid., p. 107). Scott (ibid., p. 104) inserts the response she never gave to Farrah: her desire to prove to Farrah that they are alike; to recount her experiences of pain and isolation; but also her acknowledgement that Farrah's analysis of their deep difference is ‘at least in part correct’. Rather than build solidarity, Scott's interview reveals disability community breakdown.
Scott (ibid., p. 114) ends the article resisting any easy conclusion to her location in a disability identity, as she reflects on the possibility that her performance of disability will change over time, potentially disrupting others’ embrace of her as ‘just enough disabled’. Scott enables the reader to be a witness to her own estranging sensitivity to herself. She reflects on how gender and appearance intersect and shape disability, estranging us from a strict dichotomy between abled privilege and disabled marginalisation.
Estranged from Celebrating Disability
Margaret Price (2015) offers another example of the ways in which life-writing can estrange us from the social model of disability. Price (ibid., p. 273) questions the desire for disability, using her own experiences of mental illness (i.e. depression and borderline personality disorder) to embrace the awkward question in feminist disability studies: ‘Is disability sometimes bad?’.
Price (ibid., pp. 272–273) provides a scenario between Person A and Person B: Person A wants to hit himself in the head with a lamp and Person B wants to prevent him from doing so. If Person A is the person with a disability and the social model approach demands that we recognise the voices and actions of disabled people as legitimate, then is Person B wrong to want to prevent Person A from doing harm to himself? Price's example is intriguing and the generic pseudonyms she provides stage the article's moment of estrangement. After thoroughly discussing the stakes involved in the suspended lamp—to be or not to be a weapon of self-injury—Price discloses that she based the scenario on lived experience. She is Person A and her partner is Person B.
Like Scott (2013), Price (2015) cultivates a layered estranging sensitivity. Estranging us from the comfortable celebration of disability culture and also making strange her relationship to the reader as this kind of self-disclosure is seldom produced in academic discourse. Alexandre Baril (2015, p. 69) accomplishes a similar estrangement through autoethnography, as he questions the relationship to disability, transness, and the limitations of celebrating pain, suffering, and depression. Baril (2015) draws on work by Susan Wendell (1996) and Liz Crow (1996), who both challenged the social model of disability for the ways it silenced people who did not desire all aspects of disability.
An estranging sensitivity captures Price's (2015) description of crip theory and Baril's (2015) composite model of disability. Following Robert McRuer (2006), Price (2015, p. 274) argues that the ‘value of crip theory lies in its ability to reject stable identities (queer, straight, disabled, nondisabled) and instead to draw meaning from transient “moments”’. Likewise, Baril (2015) takes from the social model of disability its politicisation of experience, but acknowledges the role of pain and suffering that attend some disabilities. Price and Baril thus use autoethnography to estrange us from the social model's desire for disability.
Estranged from the Battlefield
Like Kittay (2009), I have a family member with a disability and this experience prompted my academic interest: my adult brother has autism and is nonverbal. My fieldwork with people with intellectual and developmental disabilities led to my own estranging sensitivity; however, estrangement was not my initial purpose. Instead, I was following the feminist method of ‘scholar-activism’, which draws ‘theoretical knowledge from the experience of women and other marginalised constituents of humanity and from non-elite forms of knowledge’ (Ackerly, 2001, p. 326). I used scholar-activism to seek out self-advocates with intellectual and developmental disabilities. In hindsight, I anticipated scholar-activism as a straightforward process. I had a theoretical dilemma—i.e. on what criteria should we base personhood in order to include fully people with intellectual and developmental disabilities—and I thought I had discovered the source of the answer: self-advocates with disabilities. My role as a scholar-activist would be to go to self-advocacy events and pluck out the answer.
Not surprisingly (given my naivety, in retrospect), self-advocates failed to hand me my theoretical answer. Instead, they made me feel uncomfortable in ways I failed to anticipate. Self-advocates are a diverse group. Some talked eloquently, some did not talk at all. Because I went to lots of different ‘field sites'—from local chapter meetings, wheel-a-thons, national conferences, training seminars to self-help groups—I never knew for sure who was disabled, an ally, a paid staff person, a family member or a combination of identities. Unintentionally, over a period of years, I was breaking down 1) my relationship to disability, which made me 2) rethink my relationship to you, the reader.
My commitment to disability rights meant that I aimed to enter each site with an open mind and with the right politics, but even the ‘right’ politics was not enough for me to dispel my own awkwardness (Simplican, 2015a). How could I discuss disability rights with people whose speech I could not decipher? How could I determine how self-advocates defined disability if I could not distinguish between a person with a disability or a staff person? Moreover, who was I to distill this answer? Indeed, while writing my dissertation, my relationship to my brother changed, as he moved from my parents’ home to a state-run group facility. Was writing a dissertation about disability worth it? Or was it merely the sign of my own estrangement? These estrangements led me to abandon my dissertation's introduction—that cast me on the right-side of the disability battlefield—and to instead describe my own anxiety with disability. Autoethnography can thus estrange us from ourselves, stripping us of our desired protagonist identity.
Conclusion: Estranging Reflexivity
Life-writing in feminist disability studies can solidify or destabilise the abled/disabled binary. Both purposes are important even as they pull the field in opposing directions. Claiming a disabled identity remains essential in order to gain life-saving supports and services—as well as building a strong community and political movement. Yet, to ensure that the concept of disability remains elastic—able to encompass new stories and resist exclusion—we also need to use life-writing to destabilise disability. Life-writing can thus estrange us from the same norms and identities that made claiming disability possible.
If an estranging sensitivity begins when commonplace knowledge breaks down, then researchers have to learn how to ‘stumble’ as part of their methodology (Brinkman, 2014, p. 724). How do we stumble in our research methods? As Brinkman (ibid.) suggests, there are many ways of writing that can generate an estranging sensitivity. Rather than a set of rules for the feminist disability studies scholar to follow, we might instead follow Scope. Similar to the End the Awkward campaign's online quiz, we might begin by asking ourselves some awkward questions about life-writing: Have I described moments of relational breakdown in my autoethnography? Do I seek out moments of difference, discomfort, and awkwardness? Do I try to find quick resolutions to estranging moments? Asking ourselves these questions can give life-writing and feminist methodologies the critical punch they need to tell all our stories: the fun, the feisty, and the estranging.
