Stories Of Lived Experience Research Articles

Practical and ethical challenges in co-producing technology for good in justice settings

In this article, we reflect critically on the role of digital technology in supporting desistance from crime, and the process and outcomes of co-producing digital resources in that context. Drawing on concepts of social harm, and co-production (or “working-making-doing together”), we consider the risks of digital technology perpetuating coercive aspects of the justice system. We advocate for the conscientious inclusion of people with lived experience of criminalisation in the design, implementation, and evaluation of technology that supports desistance as one way of mitigating such risks. People’s lived experiences can attune them to underlying harms in the design and use of digital tools in the justice system and help safeguard future users of that technology. We also acknowledge the costs, risks, and complexities of this work. For instance, co-production may give permanence to voices and stories of lived experiences with both the power to inspire and promote desistance and the potential to reproduce or reinforce stigma and exclusion. We reflect on such ethical complexities by considering whose needs are served in co-producing technology to support desistance. We conclude by suggesting that the recruitment and promotion of experts by experience within justice organisations can help to create a learning culture where there is a heightened awareness of user experience and potential harms in the design, implementation, and evaluation of justice technology. Please note, this paper provides the authors’ reflections on co-producing technology that supports desistance. It is not intended to set out HMPPS policy on digital rehabilitative services or co-production methods. It is written in conversation with a colleague/interlocutor with lived experience of criminalisation and imprisonment, who remains anonymous here for various reasons and to whom the article is dedicated.

Becoming an English language teacher over lines of desire: Stories of lived experiences

Beyond the notion of decision-making of career choice just being rational, this article proposes the primacy of ‘affect’ in the decision to become teachers over time. The article explores the becoming of immigrant English language teachers as an identity formation process, focusing on the lived experiences of 16 English language teachers since early childhood, mostly prior to their migration to Australia. Findings of the hermeneutic phenomenological narrative analysis of the teachers’ reflective accounts revealed two lines of becoming and their intersections—the line of becoming an English language learner and the line of becoming an English language teacher through decision-making for career choice. The histories of their initial professional decision to ‘become’ English teachers demonstrate the interplay of socially produced desires and personal investment in professional learning and capabilities since early childhood. Through unravelling the assemblages within which their desires to become teachers were fomented and strengthened through embodied lived experiences over a long period of time, we argue that the concept of English teachers’ ‘desired becoming’ informed their initial and long-term decision about career choice. This notion provides a window into the teachers’ decision-making of career choice in terms of the formation of their professional identities as an interplay of the affective and the rational. Embracing and appreciating the combined role of the affective and the rational in teachers’ becoming is important to consider in future research in this area as well as for teacher recruitment and retention, hence potentially addressing critical teacher shortages.

'Maybe I Shouldn't Talk': The Role of Power in the Telling of Mental Health Recovery Stories.

Mental health ‘recovery narratives’ are increasingly used within teaching, learning and practice environments. The mainstreaming of their use has been critiqued by scholars and activists as a co-option of lived experience for organisational purposes. But how people report their experiences of telling their stories has not been investigated at scale. We present accounts from 71 people with lived experience of multiple inequalities of telling their stories in formal and informal settings. A reflexive thematic analysis was conducted within a critical constructivist approach. Our overarching finding was that questions of power were central to all accounts. Four themes were identified: (1) Challenging the status quo; (2) Risky consequences; (3) Producing ‘acceptable’ stories; (4) Untellable stories. We discuss how the concept of narrative power foregrounds inequalities in settings within which recovery stories are invited and co-constructed, and conclude that power imbalances complicate the seemingly benign act of telling stories of lived experience.

Threats to valuing diverse voices in public debates about disability. A case study from social media*

This study aimed to highlight the threats that use of social media poses to valuing diverse voices and different kinds of expertise about disability in public debates by exploring how disability advocates responded on social media to the evidence presented by researchers to the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability. Data were collected from the social media platform Twitter during the first week of Public Hearing 3 of the Royal Commission in December 2019. Tweets by 48 individuals and 27 representatives of advocacy groups who were not described as academic researchers in their Twitter profile were collected, anonymised, and coded using template analysis techniques. Findings showed that social media commentators were critical of the presence and participation of researchers in the Commission hearings and questioned the legitimacy of their research methods and findings. These commentators stated that researchers should not speak “for” or “about” people with disabilities and rejected evidence that did not resonate with their own individual experience. For the Commission to deliver meaningful recommendations to improve the disability sector, disability policy and the lives of people with disabilities, it is important to value both stories of lived experience and rigorous research evidence. Public discourse that undermines the relationships between researchers and disability self-advocates and advocates may be unhelpful for future collaboration on the development of better policy and practice.

Changing the Story: An Alternative Approach to System Change in Public Service Innovation

Abstract Storytelling is a powerful instrument for system change. Telling stories of lived experience, listening to them, and sharing them contributes to a culture of trust based on dignity, mutual respect and shared values. In this paper we draw attention to public service innovation and co-creation with the people the service is meant for. In the past years, public service innovation was result-and output driven, targeting technological and managerial innovation. Stories of service users revealed the unintended negative consequences of such innovation policies and opened new perspectives for conversations of change based on shared values leading to innovations based on human development and dignity.

Mental Illness Education through Stories of Lived Experience: Validation Review of the DoNOHarm Framework

Mental Illness Education through Stories of Lived Experience: Validation Review of the DoNOHarm Framework

A Need to Continue Healing: Report of Findings From an Autoethnographic Study

This article reviews the design and findings of an autoethnographic study on identity development over time. The researcher wanted to know how an adult can make meaning from and develop through experiences of mental illness, spiritual awareness, and death. The purpose of this autoethnographic bildungsroman was to explore how a male in the general population describes how life events have influenced his identity development over a period of 23 years, spanning three decades. The author, as the researcher-participant, asked two primary questions: (a) How does the individual describe his adult development in terms of life events or “individual and cultural episodes” (Smith & Taylor, 2010, p. 52) related to mental illness, spiritual awareness, and death over time? and (b) How does the individual describe his possible selves in constructing a new sense of identity? The author explored the spaces between academic analysis and his personal narrative experiences by alternating between third and first-person perspectives. Addressing the research questions in this manner contributed to the literature of adult and continuing education by providing a glimpse into stories of lived experiences over time in the light of adult development. Synopsizing these findings makes them more accessible to general readers interested in adult development over a life span, to those challenged by mental illness, and to spiritual pilgrims.

Entre o discurso e o vivido: la casa de los conejos, de laura alcoba

La casa de los conejos (2008), de Laura Alcoba, é uma narrativa em primeira pessoa sobre a repressão e a resistência ao governo ditatorial argentino pelos Montoneros, em 1976. No contexto dos estudos contemporâneos da memória, em que a subjetividade e os relatos das experiências de vida são cada vez mais valorizados, como compreendemos o movimento de a autora buscar fontes documentais em sua narrativa? Dada a grande categorização de tipos de memória, como podemos classificar as evocações da autora? Concluímos que a busca documental confirma a necessidade de a autora sustentar, pelo registro impresso, suas lembranças individuais que também são coletivas; que seu relato testemunhal transita entre a verdade, a subjetividade, a sacralização e, finalmente, que suas memórias se encontram entre pós-memória e memória herdada, configurando uma “memória híbrida”. Beatriz Sarlo, Marcio Seligmann-Silva, Maurice Halbwachs, Michael Pollak são alguns dos nossos referenciais teóricos.

The Attempt Was My Own! Suicide Attempt Survivors Respond to an Australian Community-Based Suicide Exposure Survey.

Those who attempt suicide have often been overlooked in the suicide prevention literature. Where stories of lived experience have been included, it is often from the perspectives of healthcare professionals who treat the physical and/or psychological impacts following an attempt, rather than firsthand accounts. Yet, the most intimate insights of suicide are lost by not including the voices of those with lived experience of suicide attempt. Through an online, community-based, non-representative survey exploring the impact of exposure to suicide, a sub-sample of 88 participants responded who reported their exposure to suicide as being their own attempt. The survey covered demographic information, questions assessing exposure to suicide attempts and death, current global psychological distress via the Kessler Psychological Distress (K10) Scale, and short qualitative responses provided by 46 participants. The qualitative data was thematically analysed resulting in three themes; the way in which individuals experienced being suicidal; who they were able, or not, to disclose these intentions to—before and after their suicide attempt; and, how these people experienced the formal and informal health care supports available to them to assist with their suicidal crisis. This paper presents important findings from a sample of participants who are highly distressed, and have previously attempted to take their own lives. This adds depth to our understanding of lived experience of suicide attempt, issues associated with seeking appropriate support after suicide attempt, and also demonstrates a willingness of participants to share their stories, even in a study that did not explicitly target those with lived experience of suicide attempt. The need for consistent and compassionate mental health care after a suicide attempt is identified as a vital component of living well after a suicide attempt.

Together We Read, Together We Learn: Examining Book Clubs as a Means of Connecting LIS to a Feminist Diversity Ethic


 
 
 This article examines the significance of dialogic exploration of feminist and diversity-orientedtexts in book clubs consisting of Library and Information Science (LIS) master’s students at the University of Hawai‘i at Mānoa. Through this research, I sought to achieve an understanding of how participation in book clubs that espouse a feminist or diversity ethic inspire members to create deeper, more insightful connections between these values and LIS. While the two book clubs under study began as separate entities with distinct memberships, participants’ dualmembership increased over time. The initially distinct ideals of each book club—feminism and diversity—coalesced, and a new value schema emerged in common between the two: a feminist diversity ethic. A feminist diversity ethic is a form of intersectional feminism that values experiential knowledge, the multifaceted nature of identity, respectful communication, caring, and orientation toward social justice as a means of dismantling interlocking systems of oppression. In the book clubs, this ethic encouraged the proactive search for exposure to diverse cultural and experiential paradigms through texts and stories of lived experience. Emphasis onthis ethic informed book club members’ approach to LIS in several ways: first, it challenged participants to define diversity and its importance in LIS; second, it fostered the deconstruction of the notion of the other; and third, it enabled participants to actualize a feminist diversity ethic within the structure of the book clubs, thus preparing them to continue this ethic in their future roles as LIS practitioners.
 
 

Personal stories, public voices: Performance for public-making

The project described in this paper rests on a belief in the power and significance of storytelling in social change processes. It also takes seriously worries and critique about ‘what happens’ when personal stories of troubles or suffering are told to strangers, particularly as they revolve around contradictory claims about empathy. Over several months our research team worked with a group of women who have experienced homelessness and who are advocates for themselves and other women in our community. The women participated in a series of storytelling and image theatre workshops and exercises that formed the basis of a 20-minute dramatic vignette centered on their interactions with social services in the city. The creative process was designed to value the knowledge carried in personal stories of lived experience, while harnessing the power of the arts to evade some of the problematics of personal storytelling in public spaces. The women performed the vignette for social work students. In this paper we reflect on comments from students who witnessed the performance and offer our analysis of their responses in relation to specific features of the drama. In a discursive context that holds individuals responsible for all manner of social problems, we consider the potential of projects like this one for summoning and mobilizing publics and publicness.

Mother is Not Brown

In this performance autoethnography the author explores the simultaneity of telling and resisting stories of lived experience. In the process the author constructs the notion of “resisting stories” as autoethnographic performance narratives that both resist and demand telling in the process of making themselves public. Through his memories, the author tries to show the in-possible performance of brown-bodied, curlier hair woman, his Mother, in her yearning to Whiteness. However, the author too, cannot escape the stories his own hair tells. Please, keep your “hair straight.”

Unspeakable stories: when counter narratives are deemed unacceptable

PurposeQualitative researchers embrace insider narratives and affirm an environment where stories of lived experiences are acceptable and welcomed. Equally, subjective narratives often are presented for publication with an assumption that they will reach a readership, after a rigorous but empathic review process. Such assumptions and expectations underpin Indigenous, postmodern, feminist, critical and narrative research and writing approaches, all of which seek to foreground non‐dominant stories, and expose untold lived experiences through publications. However, this paper aims to challenge the somewhat implicit narrative that “lived experiences would always be welcomed”.Design/methodology/approachThe authors discuss qualitative researchers and narratives, including excluded stories, and then reveal their own experiences of trying to publish less common, confronting, adoption narratives.FindingsThe authors find that stories that do not meet the authorized or conventional version of a social transcript, or those beyond current comprehension, may remain silenced. They speculate that the adoption stories they presented for publication were rejected because they were too confronting.Originality/valueThe authors contend that some stories challenge convention to such an extent that they become unacceptable. They tell different but interwoven stories of rejected, adoption‐related manuscripts, before reflecting on implications for the presentation of qualitative narratives.

Children of the Greek Civil War: Refugees and the Politics of Memory (review)

Loring M. Danforth and Riki Van Boeschoten, Children of the Greek Civil War: Refugees and the Politics of Memory. Chicago: University of Chicago Press, 2012. 352 pp. Loring M. Danforth and Riki Van Boeschoten offer a masterful, original, and rich ethnographic analysis of the evacuation of children, self-identified as Greeks and Macedonians, from their homes in northern Greece by both parties in the Greek Civil War of 1946-1949, namely the royalist right-wing government and the Greek Communist Party. The refugee children-that is, children who were usually between the ages of three and 14, though often younger or older children as well, who were forced to leave [their] home[s] and country of origin because of a well-founded fear of (265)-were evacuated to homes operated by the Greek Communist Party in Eastern Europe and to paidopoleis (literally meaning children's cities) by the Greek government in locations throughout Greece. Based on archival research and ten years of fieldwork in multiple locales around the world, the authors explore in three neatly organized and tightly knit parts the intersection between the stories of lived experiences as told by individual refugee children after the end of the Cold War and the history of the Greek Civil War. They provide pioneering insights into a still controversial episode in Greece's modern history and maintain a remarkably balanced and sensitive approach, whereby a wide range of personal experiences and perspectives on the Civil War is presented and analyzed in a sophisticated manner. For the non-specialists in the ethnography of Greece, the authors make strong theoretical contributions to the fields of refugee studies, the anthropology of children and childhood, and the politics of memory. Danforth and Van Boeschoten write with the hope that the similarities in the meanings with which all the refugee children of the Greek Civil War have themselves imbued their past experiences, irrespective of their national identity and political party affiliation, will help to heal the traumas of war and exile and to bring about reconciliation with the past. It is particularly encouraging to read this book at the present moment, when the Greek and Macedonian sides involved in the controversy concerning the memory of the evacuation of refugee children of the Greek Civil War lay claim with nationalist fervor to an absolute truth about suffering and victimhood and produce authoritative national narratives. The multiple voices presented in this book eloquently illustrate the complexity and ambiguity of the refugee experience, and can thus help undermine the potency of nationalist perspectives and resolve a long-lasting and seemingly intractable dispute. But let me begin at the beginning. In the first part of the book, Histories, Danforth and Van Boeschoten present the larger historical context in which the two Greek evacuation programs unfolded. In the wake of the Axis occupation of Greece in April 1941 and the immediate flight of the king of Greece, King George II, and his government into exile, the communist-sponsored resistance organization National Liberation Front (EAM) and its military wing, the Greek Popular Liberation Army (ELAS), enjoyed wide popular support among the Greek population. Although EAM consented to participate in a government of national unity and place ELAS forces under the command of British General Scobie in September 1944, polarization between the political leftand the anti-communist, royalist right continued to grow. In December 1944, fighting broke out in Athens between units of EAM/ELAS and the Greek police, rightist bands, and British troops, that lasted for six weeks. The persecution of the leftcontinued, especially after the right won the elections of 1946 and a national referendum sanctioned the return of King George II to the throne, and played a key role in the eruption of civil war. The Democratic Party of Greece, established by leaders of the Communist Party, kept to its stronghold in the mountainous regions of northern Greece. …

I hate chicken breast: a tale of resisting stories and disembodied knowledge construction

In this performance autoethnography, the author explores the simultaneity of telling and resisting stories of lived experience. In the process, the author constructs the notion of “resisting stories” as autoethnographic narratives that both resist and demand telling in the process of making themselves public. In the process the author engages in a dialog with Della Pollock’s article “The Performative I.” He tries to re-present accounts of growing up poor through his experiences of class, race, and gender. From an eating/not eating moment he tries to create resisting stories; resisting alcoholism, resisting patriarchal structures with love and anger, resisting disembodied knowledge construction that still tends to reproduce the very oppression it intends to challenge, and resisting narrative that defies the “existence” of a broken family living in a vacuum.

Spiritual awareness pedagogy: the classroom as spiritual reality

Our theoretical orientation as educators is to teach with a spiritual foundation. Central to our perspective is that the classroom as an academic space is poised to facilitate profound spiritual evolution for students. A graduate course in psychotherapy using a Spiritual Awareness Pedagogy (SAP) offers students an opportunity to understand spiritual experience on the road to becoming psychologists, teachers, and healers. At the level of phenomenology, SAP holds that psychological events and mental illness index the extent to which we are living in a way consistent with a fundamental spiritual reality. Students are welcomed into bringing private, raw, neglected, and often discredited stories of lived experience to the foreground. Students and instructors together explore and integrate their impact, receive healing, and in turn envision how to tap this transcendent ground for others. Direct experience and imagination are given primacy along with logical positivist analysis and serve to create dynamic discussions with a life of their own. Classroom examples and reflections by students in their own words, as well as reflections of teachers, will be illustrated.

Community‐based place meanings for park planning

Place meanings provide visions for land‐use planning, are references to evaluate land‐uses, and act as baselines to assess environmental degradation. Roles for social science in park planning are becoming directed at understanding community‐based place meanings of stakeholders. Place meanings characterize reasons that an environment is valued and describe the uniqueness of a locale. Place meanings are characterized as being complex and difficult for people to know. The representation of place meanings are often embedded in stories of lived experiences, and the telling of these stories is audience sensitive. The lack of adequate venues to negotiate place meanings is a crisis in need of response by the park planning and leisure research community.

Mirroring Meaning Making

This article illustrates the use of students’ personal narratives and ‘thick description’ in reflecting on field and research experiences in a social work programme. Narrative as an educational tool enabled the authors to collaborate with students, field supervisors and each other in building reflexive links between past, present and future actions. In telling and retelling stories of lived experience around the tasks of social work, all players were able to come together and dialogue at deepening levels of understanding. The complexities involved in taking effective action were brought to the fore by the use of ‘thick description’ in students’ narratives of an identified learning moment. In the history of social work, stories abound of the struggles involved in consciously learning by doing. Our project allowed for such stories, written by students, to be used in facilitating the development of critical reflexivity as an integral part of becoming a practitioner. Subsequently, with student permission, some of these narratives were used in field educators’ workshops. This exercise has made for a weaving of theory, practice and reflection from the perspectives of students, academics and field educators to the shared ends of improving practice.

Learning about Sexual Meaning and Decision-Making from Urban Adolescents

This article uses examples of research conducted by teams of urban youth researchers assisted by adult social scientists to illustrate the utility of two approaches to cultural research on sexuality, narrative research, and scripting theory. Narrative research is based on analysis of personal stories of life experiences; scripting theory points to cultural scripts as important in shaping and changing sexual norms. Examples of youth studies demonstrate how sexuality is situated among other issues in the life of urban teens, define sexual norms by age and gender, and identify scripted patterns of sexual sequencing. Methods used in conceptualization and data collection model negotiation skills needed for successful sexual decision making. The article concludes with a discussion of the relative merits of involving youth as partners in exploring adolescent sexuality. It describes how such partnerships can be created so that cultural research can be conducted from a youth perspective, and new knowledge integrated into socially constructed approaches to understanding and preventing risky sexual behaviors in young people.