Disability Gender and Narratives of Pain, Estrada, Zárate (original) (raw)
Related papers
Disability, Gender and Narratives of Pain: The Caregivers’ Perspectives
Journal of Cultural and Religious Studies, 2016
This paper analyzes how caregivers' narratives about pain and illness are constructed, and also what narrative identities are formed during the lengthy process of taking care of a woman with cerebral palsy, from the years of 1972 to 2014. Of particular interest is how these voices narrate feelings of struggle in order to cope with their own needs and the needs of a disabled woman. How this situation affected their way of living, their views about life through gender-sex, violent, discriminatory, psycho-social and cultural perspectives (Lamas, 2002)? This study also draws from Hydén's ideas regarding narratives about illness to identify diverse forms to represent reality by means of creating affective bonds, including aspects such as plot, metaphors and the construction or reconstruction of the Self (1995; 1997), which can be related to the transformation of the narrative identity (Ricoeur, 1995; 1996) of each caregiver. This study aims to open other scenarios to establish public policies of support for caregivers and for the disabled, and to question the role that government and medical institutional have played in order to benefit the society as a whole.
Narrating Disability, Trauma and Pain: The Doing and Undoing of the Self in Language
Word and Text vol. 8 (2018): 169-186, 2018
This article analyses themes from Christina Crosby's disability memoir A Body, Undone: Living On after Great Pain through the philosophical works of Judith Butler. Both Crosby and Butler propose complementary ideas on corporeal vulnerability, the precariousness of life, relationality and interdependence. Crosby's memoir provides a critique of dominant disability discourses that affect the social formation and reception of disability narratives, such as narratives that unilaterally characterize disabled subjects as strong, resilient and autonomous while bracketing the traumatic dimension of disability out of the narrative. Crosby's book is discussed as a rich disability memoir that, while it firmly presents an account of living on, accounts for debilitating physical pain, the traumatic aspect of disability and the intense grief for lost bodily functions, abilities and life possibilities. Reflecting also on the socio-political character of disability narratives, the article considers how and why certain narratives can function critically and motivate a critical analysis of contemporary representations of disabled people. Approaching philosophically Crosby's memoir through Butler's work enables a wide-ranging consideration of topics found in the memoir such as the therapeutic nature of writing, narrative identity and its difficulties, the relations between disability studies and trauma theory, the political import of the personal and the ethico-political significance of interdependence.
Disability and Rehabilitation, 2014
Purpose: To explore how gender appears in the stories of self-told by men and women undergoing rehabilitation for chronic muscle pain. Method: The material, which consists of qualitative interviews with 10 men and 6 women with chronic neck pain, was analyzed from a gender sensitive perspective using narrative method. The analysis was inspired by Arthur Frank's typologies of illness narratives (restitution, chaos and quest). Findings: The women's stories displayed selves that were actively trying to transcend their former identity and life conditions, in which their pain was embedded. Their stories tended to develop from ''chaos'', towards a quest narrative with a more autonomous self. The selves in the men's stories appeared to be actively seeking a solution to the pain within a medical context. Framed as a restitution narrative, rooted in a biomedical model of disease, the voice often heard in the men's stories was of a self-dependent on future health care. Our findings contribute greater nuance to a dominant cultural conception that men are more independent than women in relation to health care. Conclusion: Understanding the significance of gender in the construction of selves in stories of chronic pain may help to improve the health care offered to patients suffering from chronic pain.
Telling stories about illness and disability: the limits and lessons of narrative
Perspectives in biology and medicine, 2010
Autobiographical narratives of illness and disability are influential in popular and medical discourses of illness and disability, in part because these narratives represent illness and disability within a sociocultural context, intersecting with other categories of difference. Clinicians can benefit patients through a critical understanding of the formal and social conventions that shape illness and disability narratives and the effect these conventions can have on the lived experience of illness and disability. I analyze the 2003 edition of Lucy Grealy's Autobiography of a Face to illustrate these socio-narrative conventions, especially in light of an afterword that significantly revises the ending to Grealy's narrative. I explore the parallels between narrative conventions-such as the "recovery narrative"-and caregivers' expectations that shape the role of the "good patient," as well as the resistance to conventions of closure, represented by the "renegotiated ending."
Disability and Rehabilitation
Purpose: To explore how gender appears in the stories of self-told by men and women undergoing rehabilitation for chronic muscle pain. Method: The material, which consists of qualitative interviews with 10 men and 6 women with chronic neck pain, was analyzed from a gender sensitive perspective using narrative method. The analysis was inspired by Arthur Frank’s typologies of illness narratives (restitution, chaos and quest). Findings: The women’s stories displayed selves that were actively trying to transcend their former identity and life conditions, in which their pain was embedded. Their stories tended to develop from “chaos”, towards a quest narrative with a more autonomous self. The selves in the men’s stories appeared to be actively seeking a solution to the pain within a medical context. Framed as a restitution narrative, rooted in a biomedical model of disease, the voice often heard in the men’s stories was of a self-dependent on future health care. Our findings contribute gr...
Narrative and its potential contribution to disability studies
Disability & Society, 2008
This article seeks to expand our understanding of narrative and the analysis of stories researchers invite and collect in the domain of disability studies. What narrative inquiry is and various reasons why researchers might opt to choose to turn to narratives are highlighted. Painting with broad strokes, narrative analysis is then considered before a typology of different ways in which stories can be analysed is offered. Illuminated by the typology are two contrasting standpoints on narrative analysis (storyteller and story analyst) and three specific methods (structural, performative, and autoethnographic creative analytic practices) that each standpoint might use to analyse the whats and hows of stories. The article closes by suggesting that researchers might consider using a variety of analyses in order to assist us to understand the complexities of the social world in diverse ways.
Prose Studies
Deadline for abstract submissions: 15 September 2020 (acceptance will be communicated before November 2020) Deadline for full-manuscript submissions: 1 March 2021 Expected date of publication: September 2021 Editors of Special Issue: Rosalía Baena (University of Navarra, Spain), Marta Cerezo (UNED University, Spain) and Rosario Arias (University of Malaga, Spain). https://think.taylorandfrancis.com/special\_issues/contemporary-illness-narratives/?utm\_source=TFO&utm\_medium=cms&utm\_campaign=JPD14372 This special issue of Prose Studies aims to explore the critical possibilities of Phenomenology for illness narratives. Phenomenology, as a critical perspective, provides an especially adequate framework for illness narratives, as it deals particularly with one’s embodied situatedness. The phenomenological concepts of ‘recognition’ and ‘orientation’ function as useful critical lenses to reveal the cultural mediation of illness narratives on the issues of illness, pain, death, but also survival and resilience. The phenomenological notion of ‘orientation’ derives from Maurice Merleau-Ponty’s Phenomenology of Perception (1945), and is later taken up by Sara Ahmed in her Queer Phenomenology (2006), where she aims to develop the relevance of the concept of ‘orientation’ for queer studies and within phenomenology itself. The dynamic nature of ‘orientation’, as the notion refers to the space in between bodies and objects, involves one’s position in time and space, and its double-sidedness lends to useful approaches to interpret contemporary narratives of illness where bodily engagement with the world acquires multiple forms that deal with orientation, dis-orientation and re-orientation. Then, ‘orientation’ is pivotal for illness narratives where bodily intentionality, that is, the physical directedness towards objects and bodies in space and time is essential (Ahmed 2006). In turn, ‘recognition’, as defined by Rita Felski (2008) is associated with “affective orientation” (18; emphasis added), that takes place in the act of reading, a dynamic interplay between texts and readers. Felski develops four modes of engagement in contemporary reading practices (recognition, knowledge, enchantment and shock), calling for “a phenomenology of reading” (18), her own contribution to “neo-phenomenology”. Felski highlights phenomenological “attentiveness to the first person perspective” (17) in embedded and embodied narratives. In this sense, the concept of recognition lays bare the dialogical mode of contemporary illness memoirs, as well as help us elucidate the social and cultural mediation of illness narratives. In this critical context, contemporary illness memoirs such as Paul Kalanithi’s When Breath Becomes Air (2016), Hilary Mantel’s Giving up the Ghost (2003) and Ink in the Blood: A Hospital Diary (2010), Jenny Diski's In Gratitude (2016), or Olive Sacks’ Gratitude (2016), to name but a few, artfully bring the reader into the reading/writing dynamics of the author's self-reflexive embodied experience of illness. Also, these writers negotiate and re-orient themselves between embodiment and disembodiment, life/survival and death, showing a heightened interest in the materiality of the world through the persistent presence of relevant objects in their narratives. Thus, we need to further investigate the need for recognition on the part of the readers, or, in other words, what it is that authors demand from readers in terms of acknowledging their new embedded and embodied realities of illness. We would welcome submissions that will open up questions about the problematics of textual engagement in the dialogical mode of contemporary illness memoirs from the perspective of ‘orientation’ and ‘recognition’. Some of the questions that might be addressed (but not limited to): -What are the main phenomenological concepts, following Edmund Husserl, Martin Heidegger, Maurice Merleau-Ponty, among others, used in contemporary critical theory? -How does Sarah Ahmed’s concept of ‘orientation’ apply to the experience of illness? How does ‘orientation’ relate to Felski’s concept of ‘recognition’? -How can we approach contemporary illness memoirs through the critical lens of the concepts of ‘orientation’ and ‘recognition’? -How are illness memoirs received and interpreted by contemporary readers? What impact do they have on contemporary perceptions of illness and disability? -What are the strategies of re-positioning, re-orientation and/or dis-orientation in the textual engagement with an illness narrative? -What is the role of materiality and objects in illness narratives in relation to the concepts of ‘orientation’ and ‘recognition’?
Hybrid identities? Trajectories of the Lives of Women with Acquired Disabilities
Przegląd Socjologii Jakościowej
In the study of disability, an extremely important role is played by issues related to identity changes occurring under the influence of experiences which alter the current course of life and force the adoption of new roles and the adaptation of previously fulfilled roles. This is the nature of a disability acquired in adulthood. It is a turning point that transforms the identities of women who must redefine themselves and their places in a reality that is new to them. The main goal of the article will be to show the changes that affect the identities of women who, as a result of an accident, acquired disability in adulthood. The study is based on autobiographical narrative interviews. This method allowed me to reconstruct the trajectory of the lives of the respondents, showing the process-like nature of the identities they shape, which have undergone changes under the influence of the need to adapt to the conditions resulting from the acquired disability. Six women – diversified in...
Social Science & Medicine, 2004
In this study, we explore issues of self and shame in illness accounts from women with chronic pain. We focused on how these issues within their stories were shaped according to cultural discourses of gender and disease. A qualitative study was conducted with in-depth interviews including a purposeful sampling of 10 women of varying ages and backgrounds with chronic muscular pain. The women described themselves in various ways as 'strong', and expressed their disgust regarding talk of illness of other women with similar pain. The material was interpreted within a feminist frame of reference, inspired by narrative theory and discourse analysis. We read the women's descriptions of their own (positive) strength and the (negative) illness talk of others as a moral plot and argumentation, appealing to a public audience of health personnel, the general public, and the interviewer: As a plot, their stories attempt to cope with psychological and alternative explanations of the causes of their pain. As performance, their stories attempt to cope with the scepticism and distrust they report having been met with. Finally, as arguments, their stories attempt to convince us about the credibility of their pain as real and somatic rather than imagined or psychological. In several ways, the women negotiated a picture of themselves that fits with normative, biomedical expectations of what illness is and how it should be performed or lived out in 'storied form' according to a gendered work of credibility as woman and as ill. Thus, their descriptions appear not merely in terms of individual behaviour, but also as organized by medical discourses of gender and diseases. Behind their stories, we hear whispered accounts relating to the medical narrative about hysteria; rejections of the stereotype medical discourse of the crazy, lazy, illness-fixed or weak woman. r Linda speaks on behalf of a group of women with chronic muscular pain: