Search results for: sibling’s lived experience of disability
Commenced in January 2007
Frequency: Monthly
Edition: International
Paper Count: 5432

Search results for: sibling’s lived experience of disability

5432 Seven Brothers and Sisters of Severely Disabled Children Speak up about Their Everyday Challenges and Needs : A Multiple Case Study

Authors: Myriam Castonguay, Florence Vinit

Abstract:

This study aims to gain a better understanding of the lived experience of seven children growing up in a family where another child is severely disabled, informed by family systems theory and the socio-ecological model of development. In depth semi-structured interviews were conducted with seven children who described they everyday life since their brother’s or sister’s diagnosis. Thematic analysis revealed four themes : struggling with loneliness inside the family, supporting the disabled child through its journey, accommodating to a changing routine and keeping a “bubble” for oneself. Brothers and sisters depict a family life characterized by much loneliness, with severe disabilities requiring ongoing care and prolonged hospitalizations. In the midst of adversity, siblings describe themselves as highly committed to supporting the disabled child and to preserve family cohesion, even if that means getting exposed to emotionally challenging situations and adjusting their daily routine frequently. Children recount that keeping up with schoolwork and leisure activities of their own is central to their well-being. Having a space where one can reconnect with his ordinary life as a kid is also deemed very important. This study reminds us that more needs to be done to counteract the loneliness experienced by siblings through the family experience of disability. Family members and clinicians need to be extra vigilant to ensure siblings’ needs don’t go unnoticed or dismissed, as it may be difficult for this population of children to voice their own experience and needs. Family, school and other actors in the community may help brothers and sisters pursue their personal dreams, goals and projects, to continue experiencing well-being despite adverse life circumstances.

Keywords: sibling’s lived experience of disability, sibling’s needs at various levels of the ecosystem, family adjustment to the disability experience, supporting family wellness through the disability experience

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5431 Sibling Relationship of Adults with Intellectual Disability in China

Authors: Luyin Liang

Abstract:

Although sibling relationship has been viewed as one of the most important family relationships that significantly impacted on the quality of life of both adults with Intellectual Disability (AWID) and their brothers/sisters, very few research have been done to investigate this relationship in China. This study investigated Chinese siblings of AWID’s relational motivations in sibling relationship and their determining factors. Quantitative research method has been adopted and 284 samples were recruited in this study. Siblings of AWID’s two types of relational motivations, including obligatory motivations and discretionary motivations were examined. Their emotional closeness, senses of responsibility, experiences of ID stigma, and expectancy of self-reward in sibling relationship were measured by validated scales. Personal, and familial-social demographic characteristics were also investigated. Linear correlation test and standard multiple regression analysis were the major statistical methods that have been used to analyze the data. The findings of this study showed that all the measured factors, including siblings of AWID’s emotional closeness, their senses of responsibility, experiences of ID stigma, and self-reward expectations had significant relationships with their both types of motivations. However, when these factors were grouped together to measure each type of these motivations, the prediction results were varied. The order of factors that best predict siblings of AWID’s obligatory motivations was: their senses of responsibility, emotional closeness, experiences of ID stigma, and their expectancy of self-reward, whereas the order of these factors that best determine siblings of AWID’s discretionary motivations was: their self-reward expectations, experiences of ID stigma, senses of responsibility, and emotional closeness. Among different demographic characteristics, AWID’s disability condition, their siblings’ age, gender, marital status, number of children, both siblings’ living arrangements and family financial status were found to have significant impacts on siblings of AWID’s both types of motivations in sibling relationship. The results of this study could enhance social work practitioners’ understandings about the needs and challenges of siblings of AWID. Suggestions on advocacies for policy changes and services improvements for these siblings were discussed in this study.

Keywords: sibling relationship, intellectual disability, adults, China

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5430 An Interview and PhotoVoice Exploration of Sexual Education Provision to Women with Physical Disability and Potential Experiences of Violence

Authors: D. Beckwith

Abstract:

This research explored sexual identity for women with physical disability, both congenital and acquired. It also explored whether exposure to violence or negative risk-taking had played a role in their intimate relationships. This phenomenological research used semi-structured interviews and photo elicitation with the researcher’s insider knowledge adding experiential substance and understanding to the discussion. Findings confirm sexuality for women with physical disability is marginalised and de-gendered making it less of a priority for professionals and policy makers and emphasising the need to more effectively support women with disability in relation to their sexuality, sexual expression and violence.

Keywords: lived-experience, identity, PhotoVoice, sexuality, violence, women with physical disability

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5429 A Study of the Impact of Discrimination Experience on Life Satisfaction in Korean Women with Severe Disabilities

Authors: Soungwan Kim

Abstract:

The present study analyzed the effect of discrimination experience on the life satisfaction in women with severe disabilities and the mediating effect of disability acceptance. In verifying this mediating effect of disability acceptance between discrimination experience and life satisfaction, both discrimination experience and disability acceptance were found to be statistically significant in the first and second phases. Disability acceptance was found to have a mediating effect on the relationship between discrimination experience and life satisfaction. Based on this finding, measures for enhancing the quality of life in individuals with disabilities that experience low levels of life satisfaction were proposed.

Keywords: disability discrimination, disability acceptance, life satisfaction, mediating effect

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5428 An Ecological Systems Approach to Risk and Protective Factors of Sibling Conflict for Children in the United Kingdom

Authors: C. A. Bradley, D. Patsios, D. Berridge

Abstract:

This paper presents evidence to better understand the risk and protective factors related to sibling conflict and the patterns of association between sibling conflict and negative adjustment outcomes by incorporating additional familial and societal factors within statistical models of risk and adjustment. It was conducted through the secondary analysis of a large representative cross-sectional dataset of children in the UK. The original study includes proxy interviews for young children and self-report interviews for adolescents. The study applies an ecological systems framework for the analyses. Hierarchical regression models assess risk and protective factors and adjustment outcomes associated with sibling conflict. Interactions reveal differential effect between contextual risk factors and the social context of influence. The general pattern of findings suggested that, although factors affecting likelihood of experiencing sibling conflict were often determined by child age, some remained consistent across childhood. These factors were often conditional on each other, reinforcing the importance of an ecological framework. Across both age-groups, sibling conflict was associated with siblings closer in age; male sibling groups; most advantaged socio-economic group; and exposure to community violence, such as witnessing violent assault or robbery. The study develops the evidence base on the influence of ethnicity and socio-economic group on sibling conflict by exploring interactions between social context. It also identifies key new areas of influence – such as family structure, disability, and community violence in exacerbating or reducing risk of conflict. The study found negative associations between sibling conflict and young children’s mental well-being and adolescents' mental well-being and anti-social behaviour, but also more context specific associations – such as sibling conflict moderating the negative impact of adversity and high risk experiences for young children such as parental violence toward the child.

Keywords: adjustment, conflict, ecological systems, family systems, risk and protective factors, sibling

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5427 Moving Beyond the Limits of Disability Inclusion: Using the Concept of Belonging Through Friendship to Improve the Outcome of the Social Model of Disability

Authors: Luke S. Carlos A. Thompson

Abstract:

The medical model of disability, though beneficial for the medical professional, is often exclusionary, restrictive and dehumanizing when applied to the lived experience of disability. As a result, a critique of this model was constructed called the social model of disability. Much of the language used to articulate the purpose behind the social model of disability can be summed up within the word inclusion. However, this essay asserts that inclusiveness is an incomplete aspiration. The social model, as it currently stands, does not aid in creating a society where those with impairments actually belong. Rather, the social model aids in lessening the visibility, or negative consequence of, difference. Therefore, the social model does not invite society to welcome those with physical and intellectual impairments. It simply aids society in ignoring the existence of impairment by removing explicit forms of exclusion. Rather than simple inclusion, then, this essay uses John Swinton’s concept of friendship and Jean Vanier’s understanding of belonging to better articulate the intended outcome of the social model—a society where everyone can belong.

Keywords: belong, community, differently-able, disability, exclusion, friendship, inclusion, normality

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5426 The Intersection of Masculinity and Disability in the Spatial Experience of Visually Impaired Men

Authors: Lucie Pospíšilová, Robert Osman, Hana Porkertová

Abstract:

The scholarly literature demonstrates disability and masculinity in conflict with each other. While disability is associated with dependence, weakness, or helplessness, masculinity is associated with independence, strength, and power. Thus, disabled masculinity might be a dilemma experienced on a personal level. The relationship between masculinity and disability is also interesting from a geographical point of view because the conception of space is gendered. In our society, the skills like spatial orientation, working with the maps, and navigation technologies as same as with scale are associated with masculinity. And because these skills are related to the visual imagination, it is the blindness that is associated with the limitation or even the absence of them. Thus, the conflict of masculinity and disability in the spatial experience is very well apparent in the case of visually impaired men. To study this conflict can tell us a lot not only about the experience of visually impaired men but also about the conception of space in geography and in our society. The paper uses Henri Lefebvre's theory of space based on a triad of spatial practice, representations of space, and representational space. It answers the question: How masculinity and disability intersect in the spatial experience of visually impaired men? The data come from research conducted in Brno and Prague (Czechia) in 2020 and 2021 and include 7 interviews and 6 go-alongs with visually impaired men.

Keywords: disability, masculinity, abstract space, spatial experience, visually impaired men

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5425 Voice in Music Therapy and Adult Trauma Research: Presenting a Meta-Synthesis of Lived Experience Perspectives

Authors: Kirsten B. Hillman

Abstract:

There is a growing body of qualitative research in adult mental health and music therapy contexts which highlights user perspectives; however, only a very small sub-section of this literature pertains to people with lived experiences of psychological trauma. This paper will provide a meta-synthesis of this existing body of research, with the intention to present a cohesive overview of salient themes in this research and a platform for the under-represented voices of those with lived experience. This synthesis will be contextualised within a broader discussion of ‘Voice’ in trauma and music therapy research, considering its layered meanings: including literal expressive vocalising and musical expression, voicing after experiences of silencing, and the possibilities of experiencing self-determination and agency in therapy after trauma.

Keywords: lived experience, music therapy, trauma, user perspectives

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5424 Being Second Parents: A Qualitative Research on Perceptions, Emotions, and Experiences of Adolescents towards Their Siblings with Autism Spectrum Disorder

Authors: Christi Conde, Claudia Macias, Bianca Sornillo

Abstract:

The effects of having a child with Autism Spectrum Disorder (ASD) extends to the family specifically, to the typically developing siblings. Provided that Filipino values involve close family-ties and family-centeredness, this study is interested in exploring the experiences of Filipino adolescents as a sibling of those diagnosed with ASD. A total of eleven (11) Filipino individuals, 3 males and 8 females, ages 11-24 years old, participated in the study – 6 of them were interviewed while the rest partook in a ginabayang talakayan (a variation of a focus group discussion). The data were analyzed using thematic analysis. Results showed 5 major themes: (1) the individual has mixed emotions and perceptions towards sibling, (2) the individual experiences differential treatment from parents, (3) the individual has responsibilities towards sibling, (4) the individual experiences personal growth, and (5) the individual is adjusting to the unfavorable effects of having sibling with ASD. Another emerging theme is an interplay between acceptance of one’s sibling, and one’s emotions and perceptions. It was also observed that there were more positive changes than negative within the individual. Having a lifetime responsibility towards sibling was also evident. Differences across ages involve the depth of awareness of the sibling’s condition and its implications. Acknowledgement of future responsibilities was evident regardless of age.

Keywords: adolescents, emotions, experiences, perceptions, qualitative research, siblings with ASD

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5423 Siblings of People with Intellectual and Developmental Disabilities: Influence of Culture on Their Identity and Quality of Life

Authors: Olga Muries-Cantan, Alice Schippers, Climent Gine, Noelle van den Heuvel

Abstract:

A systematic review of the literature about the quality of life perceptions of siblings of people with intellectual and developmental disabilities (ID/DD) has shown differences and similarities among siblings’ perceptions around the world. Some of these differences might be explained by the influence of cultural and religious backgrounds on siblings’ quality of life through values, beliefs, and perceptions of ‘normalcy’ and stigma. The main goal of the multiple case study that we present, is to explore the quality of life perceptions of two adolescent siblings of individuals with ID/DD in order to identify the role cultural influence has played in their perceptions of quality of life. Two siblings from different European regions will participate in the study: one from a Southern European country (Spain) and the other one from a Western European country (The Netherlands). Taking a cross-cultural perspective, concepts such as values, cultural beliefs regarding disability, expectations, identity, supports, desires, and sibling relationships, will be discussed in a semi-structured interview with each sibling. Data will be analysed following an interpretative phenomenological analysis (IPA). It is expected that findings will show the particularities of the experience of having a brother or a sister with ID/DD and the singular influence of the culture on siblings’ perceptions of quality of life. The results of this study will help to spread awareness around the necessity that researchers, practitioners, and policymakers take into account the cultural background of the individuals in order to provide them with better services and support. In this line, more culturally situated research is required to enlarge the knowledge in this field.

Keywords: culture, intellectual disability, quality of life, siblings

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5422 Assessing the Disability-Free Life Expectancy and Decomposition of Its Difference: A Gender Perspective on India over the Decade 2001-2011

Authors: Kajori Banerjee, Laxmi Kant Dwivedi

Abstract:

“Health transition” is defined to be “a process through which high levels of mortality, morbidity and disability are reduced to low levels by influencing cultural, social and behavioural factors”. Life expectancy in India has been on the rise and parallel the burden of disease and disability has also risen noticeably. Borrowing data from Indian Census (2001, 2011), this study identifies the gender-wise burden of disability by calculating disability free life expectancy (DFLE) and life lived with disability (LWD). Sullivan’s method of calculating DFLE using proportion of disabled is used for this purpose. The change in person years lived with disability in the decade 2001-11 is further decomposed using Arriaga’s method into mortality and disability effects (ME and DE) to check the magnitude and direction of contribution of mortality and disability. Nationally, along with DFLE, LWD has amplified too. Despite having the highest life expectancy and DFLE, LWD in Kerala, was highest for both sexes in 2001. But in 2011, the LWD was highest among the males of Orissa and females of Rajasthan. For the overall population, DE is positive for the prime working age groups of 20-40years indicating that there has been an increase in the disability proportion holding mortality constant for 2001-2011. Females exhibit higher positive DE implying greater loss of healthy years due to disability than males. The findings call for an immediate attention to the causes of rising disability burden among the working population, especially females, as this might heavily effect the availability of quality labour force and its relative economic output in the Indian labour market. This also hints at the degrading quality of the elongated life and needs to be given the required attention to enhance the quality of life lead in the Nation.

Keywords: disability-free life expectancy, disability effect, life expectancy, mortality effect

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5421 Disability Policy and Leaders in México

Authors: Jennifer Isabelle Rios Rendón, Ursula Sanchez, Dana Lee Baker

Abstract:

Disability Policy in México has witnessed numerous changed throughout the years. Physical disabilities are more often recognized in Mexican culture. However, with an emerging focus on neurological disabilities or differences in individuals’ new policies are needed to serve better and understand the needs of these populations. The need to understand and communicate with local leaders is imperative, as the lens used to analyze autism has historically been from a Western school of thought. We are looking to comprehend the disability policy subsystem in México - specifically how autism is perceived, the language used to describe it, and how it ties to the cultural stigma of disabilities that exist in México. Therefore, to understand this, we seek to interview multiple policy leaders on their experience in autism and disability policy. The goal is to conduct qualitative research through interviews with local autism and disability leaders in México. This methodology aims to answer the questions of what language commonly and culturally is utilized in disability policy, the context of how autism is perceived in México, and in general, the lived experience of the disability policy leaders that take part in this effort in México. Local activists and policy leaders were initially found through an online search then collected using snowball sampling. The interviews were conducted through a series of pre-formulated questions that the policy leader answered via email or a phone conversation with the researchers. Acknowledging the importance of language and accessibility, the need for the content to be in both English and Spanish as well as auditory and visual is essential to take steps in the inclusion of a Neurodiverse group of leaders. This work is a demonstration of the framework of the investigation which hopes to create a more complete understanding of the policy and political culture around autism in México. Results of the project include new insight into the developing relationship between the President Andrés Manuel López Obrador’s administration, disability activists, and neurodiverse communities. The project contributes to denormalizing the legacy of white supremacy in autism related, historically rooted in the assumption that autism occurs predominantly in white communities.

Keywords: autism, disability leaders, disability policy, México, Neurodiversity

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5420 The Intersection of Disability, Race and Gender in Keah Brown's 'The Pretty One: A Discrit and Black Feminist Disability Perspective

Authors: Mehena Fedoul

Abstract:

This paper examines the intersection of race, gender, and disability through a Critical disability race theory and black feminist disability perspective in Keah Brown's memoir, "The Pretty One." The background of the study highlights the significance of intersectionality in understanding the multifaceted experiences of individuals who navigate multiple marginalized identities. The study contributes to the underrepresented field of disability studies from Critical race and black feminist perspectives, shedding light on the unique challenges and resilience of black disabled women. The study employs a qualitative analysis of Keah Brown's memoir as a primary text. Drawing on intersectionality theory and black feminist disability scholarship, the analysis focuses on how Brown's memoir illuminates the ways in which her race, gender, and disability intersect and shape her lived experiences. The analysis reveals how Brown's memoir challenges traditional notions of disability, beauty, and empowerment through the unapologetic celebration of her blackness, femaleness, and disability. The major findings of the study indicate that Brown's memoir provides a powerful narrative of the complexity, uniqueness and richness of the lived experiences of black disabled women. It demonstrates how the intersectionality of race, gender, and disability shapes Brown's identity, body image, relationships, and societal interactions. The paper also highlights how Brown's memoir emphasizes the importance of inclusivity and intersectionality in understanding and addressing the challenges faced by black disabled women. In conclusion, this study offers a critical analysis of the intersection of race, gender, and disability in Keah Brown's memoir, "The Pretty One," from a black feminist disability perspective. It contributes to the growing body of literature that recognizes the significance of intersectionality in understanding the experiences of marginalized individuals in the disability community. The study underscores the need for more inclusive and intersectional perspectives in disability studies and advocates for greater recognition of the voices and experiences of black disabled women in academic and societal discourse.

Keywords: disability studies, intersectionality, black feminism, Keah Brown

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5419 The Intersection of Disability, Race and Gender in Keah Brown's 'The Pretty One'

Authors: Mehena Fedoul

Abstract:

This paper examines the intersection of race, gender, and disability through a Critical disability race theory and black feminist disability perspective in Keah Brown's memoir, "The Pretty One." The background of the study highlights the significance of intersectionality in understanding the multifaceted experiences of individuals who navigate multiple marginalized identities. The study contributes to the underrepresented field of disability studies from a Critical race and black feminist perspectives, shedding light on the unique challenges and resilience of black disabled women. The study employs a qualitative analysis of Keah Brown's memoir as a primary text. Drawing on intersectionality theory and black feminist disability scholarship, the analysis focuses on how Brown's memoir illuminates the ways in which her race, gender, and disability intersect and shape her lived experiences. The analysis reveals how Brown's memoir challenges traditional notions of disability, beauty, and empowerment through her unapologetic celebration of her blackness, femaleness, and disability. The major findings of the study indicate that Brown's memoir provides a powerful narrative of the complexity, uniqueness and richness of the lived experiences of black disabled women. It demonstrates how the intersectionality of race, gender, and disability shapes Brown's identity, body image, relationships, and societal interactions. The paper also highlights how Brown's memoir emphasizes the importance of inclusivity and intersectionality in understanding and addressing the challenges faced by black disabled women. In conclusion, this study offers a critical analysis of the intersection of race, gender, and disability in Keah Brown's memoir, "The Pretty One," from a black feminist disability perspective. It contributes to the growing body of literature that recognizes the significance of intersectionality in understanding the experiences of marginalized individuals in the disability community. The study underscores the need for more inclusive and intersectional perspectives in disability studies and advocates for greater recognition of the voices and experiences of black disabled women in academic and societal discourse.

Keywords: Intersectionality, black feminism, disability studies, keah brown

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5418 The Existential in a Practical Phenomenology Research: A Study on the Political Participation of Young Women

Authors: Amanda Aliende da Matta, Maria del Pilar Fogueiras Bertomeu, Valeria de Ormaechea Otalora, Maria Paz Sandin Esteban, Miriam Comet Donoso

Abstract:

This communication presents proposed questions about the existential in research on the political participation of young women. The study follows a qualitative methodology, in particular, the applied hermeneutic phenomenological (AHP) method, and the general objective of the research is to give an account of the experience of political participation as a young woman. The study participants are women aged 18 to 35 who have experience in political participation. The techniques of data collection are the descriptive story and the phenomenological interview. Hermeneutic phenomenology as a research approach is based on phenomenological philosophy and applied hermeneutics. The ultimate objective of HP is to gain access to the meaning structures of lived experience by appropriating them, clarifying them, and reflectively making them explicit. Human experiences are always lived through existential: fundamental themes that are useful in exploring meaningful aspects of our life worlds. Everyone experiences the world through the existential of lived relationships, the lived body, lived space, lived time, and lived things. The phenomenological research, then, also tacitly asks about the existential. Existentials are universal themes useful for exploring significant aspects of our life world and of the particular phenomena under study. Four main existentials prove especially helpful as guides for reflection in the research process: relationship, body, space, and time. For example, in our case, we may ask ourselves how can the existentials of relationship, body, space, and time guide us in exploring the structures of meaning in the lived experience of political participation as a woman and a young person. The study is still not finished, as we are currently conducting phenomenological thematic analysis on the collected stories of lived experience. Yet, we have already identified some fragments of texts that show the existential in their experiences, which we will transcribe below. 1) Relationality - The experienced I-Other. It regards how relationships are experienced in our narratives about political participation as young women. One example would be: “As we had known each other for a long time, we understood each other with our eyes; we were all a little bit on the same page, thinking the same thing.” 2) Corporeality - The lived body. It regards how the lived body is experienced in activities of political participation as a young woman. One example would be: “My blood was boiling, but it was not the time to throw anything in their face, we had to look for solutions.”; “I had a lump in my throat and I wanted to cry.”. 3) Spatiality - The lived space. It regards how one experiences the lived space in political participation activities as a young woman. One example would be: “And the feeling I got when I saw [it] it's like watching everybody going into a mousetrap.” 4) Temporality - Lived time. It regards how one experiences the lived time in political participation activities as a young woman. One example would be: “Then, there were also meetings that went on forever…”

Keywords: applied hermeneutic phenomenology, existentials, hermeneutics, phenomenology, political participation

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5417 Visual Impairment Through Contextualized Lived Experiences: The Story of James

Authors: Jentel Van Havermaet, Geert Van Hove, Elisabeth De Schauwer

Abstract:

This study re-conceptualizes visual impairment in the interdependent context of James, his family, and allies. Living with a visual impairment is understood as an entanglement of assemblages, dynamics, disablism, systems… We narrated this diffractively into two meaningful events: decisions and processes on (inclusive) education and hinderances in connecting with others. We entangled and (un)raveled lived experiences in assemblages in which the contextualized meaning of visual impairment became more clearly. The contextualized narrative of James interwove complex intra-actions; showed the complexity and contextualization of entangled relationalities.

Keywords: disability studies, contextualization, visual impairment, assemblage, entanglement, lived experiences

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5416 A Difficult Advertising: A Preventive Intervention for Siblings of Children with down Syndrome

Authors: Valentina Manna, Oscar Pisanti

Abstract:

The term sibling has been adopted by Italian brothers and sisters of people with disabilities, to define themselves as a group with shared features. This choice is due to the importance of underlying the centrality of what being a brother/sister means to these people because of and beyond the disability. Being a sibling offers great opportunities to develop empathy and relational skills but it may also amplify the typical dynamics of fraternal relationships dealing with envy, rivalry and concern. This outlines a condition of potential developmental risk for the non-disabled sibling, being at the same time a great resource for the child with special needs, as actor of an intimate relationship usually lasting after that one with parents. However, young siblings are often unheeded in their needs for comprehension of disability and not considered as persons requiring attention themselves. Moreover, scholars have scarcely undertaken an exploration of siblings’ perspective as competent contributors for producing knowledge useful to the benefit of families with special needs children. This contribution describes a preventive intervention for young siblings (6 – 16 years) of children with Down syndrome, by means of a psychodynamic-oriented group where participants could communicate, explore and share their emotional experiences as siblings. Based on a participatory approach, the program represents an action-research project, involving siblings as key experts for our understanding of siblings’ lives. The initiative used social media and video technologies to rise children’s voice: as a final product, participants were involved in the realization of a video campaign –which they defined ‘a difficult advertising’– built on the insights generated by the program and addressed to other siblings to help them facing and recognizing resources and difficulties related to their status. The final video campaign realized by the participants summarizes the main themes emerged during the intervention; as revealed by a thematic analysis, they are related to the difficulty in feeling to have a personal identity, to face disability as a form of ‘untought known’ and to integrate ambivalent emotions. In conclusion, the group device revealed its efficacy as a preventive tool: it allowed participants to deeply reflect on their own experiences and to communicate them for the first time in a verbal and mentalized form.

Keywords: down syndrome, group, siblings, prevention

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5415 Examining K-12 In-Service Teachers’ Comfort Level with the Social Model of Disability and Its Impact on Inclusive Measures in the Classroom

Authors: Frederic Fovet

Abstract:

Inclusive provisions have been statutorily mandated in North America for now over two decades. Despite a growing body of literature around inclusive practices, many in-service teachers continue to express difficulties when it comes to tangible implementation of inclusion in the everyday classroom. While there is debate around the various forms inclusion can take (UDL, differentiation, personalization, etc.), there appears to be a more significant hurdle in getting in-service teachers to fully embrace inclusion both as a goal and a practice. This paper investigates teachers’ degree of awareness around the Social Model of Disability. It argues that teachers often lack basic awareness of disability studies, more particularly of the Social Model of Disability, and that this has a direct impact on their capacity to conceptualize and embrace inclusion. The paper draws from the researcher’s experience as a graduate instructor with in-service teachers, as well as from his experience as a consultant working with schools and school boards. The methodology chosen here is phenomenology, and it draws on tools such as auto-ethnography. The paper opens a discussion around the reform and transformation of pre-service teacher training. It argues that disability studies should be integrated into teacher training as it plays a key role in having teachers develop a theoretical understanding of disability as a social construct.

Keywords: disability, K-12, inclusion, social model, in-service teachers

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5414 Dead Bodies that Matter: A Consensual Qualitative Research on the Lived Experience of Embalmers

Authors: Mark N. Abello, Betina Velanie L. Cruz, Angelo Joachim D. C. De Castro, Arnel A. Diego, John Ezequel V. Murillo

Abstract:

Embalmers are widely recognized as someone who mends the cadavers, but behind that is a great deal of work. These professionals are competent in physiology, chemicals, and cosmetics. Another is that such professionals face cadavers day-to-day. Given this background, the researchers intended to find out the lived experience of embalmers. The purpose of the present study is to discover the essence of the work of these professionals, to determine factors that influence their work, the depths of their life and on how the occupation affects upon physical, emotional-mental, spiritual, moral and social aspects. The researchers used the Consensual Qualitative Research, and eight embalmers, seven male and one female, from Manila and Bulacan were interviewed using open-ended questions and were used to triangulate the results. A primary research team conducted the consensus of domains, and an external auditor reviewed the results. A personal data sheet was also used, this helped the researchers group the respondents according to demographic profile. The results of the consensual qualitative research investigation revealed the four core components of the lived experience of embalmers which are motivation, struggles, acceptance, and contentment. The results revealed core components that play an important role in their everyday lives as an embalmer, daily hardships, and source of their pleasures. The present study will help future researchers, embalmers, and society.

Keywords: embalmers, consensual qualitative research, lived experience, embalming

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5413 Examining Bulling Rates among Youth with Intellectual Disabilities

Authors: Kaycee L. Bills

Abstract:

Adolescents and youth who are members of a minority group are more likely to experience higher rates of bullying in comparison to other student demographics. Specifically, adolescents with intellectual disabilities are a minority population that is more susceptible to experience unfair treatment in social settings. This study employs the 2015 Wave of the National Crime Victimization Survey – School Crime Supplement (NCVS/SCS) longitudinal dataset to explore bullying rates experienced among adolescents with intellectual disabilities. This study uses chi-square testing and a logistic regression to analyze if having a disability influences the likelihood of being bullied in comparison to other student demographics. Results of the chi-square testing and the logistic regression indicate that adolescent students who were identified as having a disability were approximately four times more likely to experience higher bullying rates in comparison to all other majority and minority student populations. Thus, it means having a disability resulted in higher bullying rates in comparison to all student groups.

Keywords: disability, bullying, social work, school bullying

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5412 Development of Disability Studies in Post-Transformational Central and East European Countries from the 80s until Present

Authors: Klaudia Muca

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Disability studies as an international movement are still developing, especially in the Central and East European young democratic countries. It is crucial to recognize in what manner this development might lead to create a sustainable social environment. Thanks to disability studies the process of introducing disability studies and its main ideas might become as effective as in the 90s in the USA or other Western countries. In the Central and East Europe lack of activism in favor of the disabled in the early stages of democratic transition (i.e. the 80s and 90s) caused misrepresentation of the disabled and their experience in present political and social sphere of life. People with disabilities were made to hold a minor position in society due to political changes that introduced in fact non-equal democracy. The results of this study indicate that activism in favor of people with disabilities and works of art created by the disabled are tools that influence present disability politics. That suggests that young European democracies need to modify their current political path in order to establish more equal social policies.

Keywords: democratic transformation, disability as minority, misrepresentation of experience, non-equal democracy, sustainability

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5411 The Lived Experience of Caregiving as a Vulnerable Person: Preliminary Findings of an Applied Hermeneutic Phenomenology Study

Authors: Amanda Aliende da Matta

Abstract:

In different fields, there are people who have something that stands out. In the educational world, for example, it is clear when some teachers have something: they are the best teachers, but this is not directly attributed to their disciplines, methodologies, etc. It is that they have something that captivates, inspires, and motivates. But we also find this something in other contexts. In this thesis, the interest is in something that some marginalized people, such as Ab (fictitious name), have. Ab was born in a rural community and saw the lifestyle of his family change drastically as a consequence of structural changes in his village. The community became impoverished, and together with a group of teenagers, he decided to migrate to Spain in search of opportunities. His best friend drowned during the crossing. After arriving, he lived in indecent conditions and felt unsafe. He now suffers from anxiety and frequently faints from it. Yet, he’s linked to Joves x la pau (a Christian project, although he is a Muslim), distributing food for people who live on the streets every Thursday afternoon. When he asked about what happens on cold and rainy days, he explained simply: "if it rains, I distribute the food, and immediately I get home, take a bath, and sleep warm under my roof. That is when we most have to go." This something he has will be called caring. And one of the general objectives of the thesis is to discover what are the meaning structures of this caring what is the lived experience of this caring. In this communication, preliminary results of an Applied Hermeneutic Phenomenology (AHP) study on the lived experience of caring as a vulnerable person are presented. The research means to answer what is the lived experience of caring as a vulnerable person. That is, to describe and explain what it is like to caregive for a vulnerable person, what it is, essentially, to caregive for a vulnerable person, what makes the lived experience of caregiving for a vulnerable person different from any other. In order to investigate the meaning of the phenomenon of caregiving as a vulnerable person, as already stated, the method used will be Applied Hermeneutic Phenomenology (AHP). We base ourselves, initially, on the proposal of Raquel Ayala-Carabajo and Max Van Manen. As Van Manen (1990) explains, AHP is a method that works essentially through fieldwork, with the collection of data on lived experience (experiential material). It is a phenomenology of practice. We here present the provisional themes we found: caregiving as a vulnerable person is seeing yourself in the other, identifying with the care-receiver; Caregiving as a vulnerable person is putting the other’s need before oneself’s; Caregiving as a vulnerable person is temporarily overcoming your weaknesses to make yourself strong for the other; Caregiving as a vulnerable person is going beyond the conventional approach; and Caregiving as a vulnerable person is taking responsibility even if it’s not yours.

Keywords: applied hermeneutic phenomenology, care ethics, hermeneutics, phenomenology

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5410 Perception of People with a Physical Disability towards Those with a Different Kind of Disability

Authors: Monika Skura

Abstract:

People with physical disabilities, as with other people with differences in appearance or style of functioning come under negative social mechanisms. Therefore, it is worth asking what the relationship of the group is, who experience psychosocial effects because of their physical disability, towards people with intellectual disabilities, hearing impairments, visual impairments, mental illnesses, and their own physically disabled group. To analyse the perception of people with a physical disability, the study explores three areas: the acceptance or rejection of society’s stigmatization towards persons with disabilities; the importance of their own experience regarding their disability, in relation to another kind of disability; their level of acceptance to social interactions, in relation to various types of disabilities. The research sample consisted of 90 people with physical disabilities, who suffer from damage to the locomotor system. The data was collected using a questionnaire and the Adjective Check List by H. B. Gough and A. B. Heilbrun. This study utilized focus interviews to develop survey items for the questionnaire. The findings highlight that the response from those who were physically disabled agreed with the opinions of general society, not only with the issue of promoting integrated solutions and offering assistance but also having the same preferences and opinions about specific types of disability. However, their perception regarding their own group was noticeably different from that of general society. In the light of the study, for people with physical disabilities, just as for able-bodied people, it can be challenging to develop a meaningful relationship with people who have disabilities. All forms of disability suffer from negative attitudes and opinions that exist in society. The majority of those who were researched were focused primarily on their own problems, this inevitably hinders the integrity of the entire group, making it more difficult for it to find a cohesive voice, in which to promote their place within society.

Keywords: general society’s opinions about disability, people with different kinds of disability, perception, physical disability

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5409 Experiences and Coping of Adults with Death of Siblings during Childhood in Chinese Context: Implications for Therapeutic Interventions

Authors: Sze Yee Lee

Abstract:

The death of a sibling in childhood leads to significant impacts on both the personal and family development of the surviving siblings. Yet, the effects of sibling loss in Chinese societies such as Hong Kong have been inadequately documented in the literature. In particular, there is a gap in the literature about the long term impacts on surviving siblings. This paper explores the experience of adult siblings encountering siblings’ death during childhood with the use of in-depth interviews. Through thematic analysis and in-depth interviews, the author explores the impacts on surviving siblings’ emotions, coping styles, struggles and challenges, and personal development. Furthermore, the influences on family dynamics are explored thoroughly, including the changes in a family atmosphere, family roles, family relationships, family communication, and parenting styles. More importantly, the author identifies (i) existing continuing bonds, (ii) crying, (iii) adequate social support, (iv) hiding own emotions as a gesture of protecting parents as the crucial elements pertinent to surviving siblings’ successful adaptation in the face of sibling loss. In addition, 'child-centered' and 'family-centered' interventions for families with siblings' death in a Chinese context are discussed. With the use of age-appropriate language and children’s participation in the preparation of death and after-death arrangements, surviving siblings could be assisted in transforming bereavement into opportunities for growth. In addition, the bereaved family could better cope with grief with open communication platforms, adequate social support, and family education resources. Meanwhile, life-and-death education at both school and community levels could enhance the public’s awareness and understanding of the bereaved individuals to prevent creating further harm to them.

Keywords: children and adolescent bereavement, children-centered, family-centered, sibling’s death

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5408 Burden of Severe COVID-19 in Center of Iran: Results of Disability-Adjusted Life Years (DALYs)

Authors: Moslem Taheri Soodejani, Mohammad Hassan Lotfi

Abstract:

Introduction: The outbreak of Covid-19 disease is an international public health concern. Therefore, the analysis of information related to mortality and disability due to COVID-19 is considered important, so the present study was designed and conducted with the aim of assessing COVID-19 Disability-Adjusted Life Years (DALYs) in Yazd. Methods: In Yazd province, all suspected cases of Covid-19 that would be referred to central hospitals in order to get confirmed through PCR or CT scan tests were recruited to our study. The fatality data of Covid- 19 was gathered from the forensic medicine organization. The Disability-Adjusted Life Years (DALYs) combines in one measure years of life lost (YLL), the loss of healthy life due to premature mortality and years of life lived with disability (YLD), the loss of healthy life because of disease and disability. Results: The total burden of COVID-19 was 23,472 years. The number of years lost due to premature death was 23385 and the number of years of life with disability due to COVID-19 was estimated to be 87 years. The disease burden was 12992 years for men and 10480 years for women. The overall incidence of COVID-19 was 1411 per 100,000, of which 1419 in men and 1402 in women per 100,000. Conclusion: The outbreak of the COVID-19 pandemic affected a large population and the residents of Yazd Province lost many years of their lives due to this disease.

Keywords: DALY, covid- 19, Yazd, Iran

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5407 Calling Persons with Disability as Divine: Exploring and Critiquing Meanings of Divyang (The One with a Divine Limb) in the Indian Context

Authors: Vinay Suhalka

Abstract:

In India, the official nomenclature used by the State for persons with disability is divyang (literally, the one with a divine limb), a word coming from the Sanskrit language. Disability thus gets portrayed as divine, at least in the welfare sector from where it flows down even to the popular imagination where it gets equated to divinity. This paper looks at reference to persons with disabilities as divyangs and goes on to discusses what such usage for an already marginalized group achieves and misses out. The issue of nomenclature and language has always been a contested one when it comes to disability. At the same time, there is also an issue of who determines these labels for the persons with disability. Nomenclature and language used for disability can have real consequences for the population of persons with disability as it may empower or disempower them. Thus, this paper looks at the issue of what it means for persons with disabilities as ‘exceptionally gifted’ and hence divyang. Language can be a powerful tool to communicate meanings and messages associated with a term. When the persons with disabilities as a group are described as ‘exceptionally gifted, talented and the source of inspiration’, it essentially stereotypes and marginalizes them by putting a burden of performance that all of them ought to be achievers, and it is only then that they would be assimilated in the larger society. This paper also argues that such a situation creates a ‘double bind’ where the person is always trying to match up to the labels (the disabled as ‘achiever, overcomer, inspirational’) created by somebody else and looks at self through the eyes of others. This conceptual paper also presents an overview of disability labels while simultaneously looking at projecting disability as divinity which has the potential to wrongly portray the lives of persons with disability in India due to the official usage of the term. It also explores the question of visibility of disability since the idea of divyang implicitly assumes that all disabilities are visible. In reality, however, it may not be the case simply because all forms of disabilities are not visible, people may choose not to visibilize their disabilities if they can and pass as able-bodied, fearing the stigma that surrounds disability. Finally, it argues for an increased focus on understanding the everyday lived realities of those with disability in order to regard it as an important form of difference which could be a potential resource for the society.

Keywords: persons with disability, labels, language use, divinity

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5406 On-Screen Disability Delineation and Social Representation: An Evaluation

Authors: Chetna Jaswal, Nishi Srivastava, Ahammedul Kabeer AP, Puja Prasad

Abstract:

We are a culture of mass media consumers and cinema as its integral part has high visibility and potential influence on public attitude towards disability which maintains no sociocultural boundaries but experiences substantial social marginalization. Given the lack of awareness and direct experience with disability, on-screen or film representations can give powerful and memorable definitions for the public that can contribute to framing the perception and attitude change. Social representation refers to common ways of thinking, conceiving about and evaluating social reality. It is a product of collective cognition, common sense and thought system. This study aims at analyzing the representations and narratives of disability in Indian cinema and Hollywood with the help of a conceptual understanding of social representation and its theoretical framework.

Keywords: disability, social representation, mainstream cinema, diversity

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5405 Disability, Stigma and In-Group Identification: An Exploration across Different Disability Subgroups

Authors: Sharmila Rathee

Abstract:

Individuals with disability/ies often face negative attitudes, discrimination, exclusion, and inequality of treatment due to stigmatization and stigmatized treatment. While a significant number of studies in field of stigma suggest that group-identification has positive consequences for stigmatized individuals, ironically very miniscule empirical work in sight has attempted to investigate in-group identification as a coping measure against stigma, humiliation and related experiences among disability group. In view of death of empirical research on in-group identification among disability group, through present work, an attempt has been made to examine the experiences of stigma, humiliation, and in-group identification among disability group. Results of the study suggest that use of in-group identification as a coping strategy is not uniform across members of disability group and degree of in-group identification differs across different sub-groups of disability groups. Further, in-group identification among members of disability group depends on variables like degree and impact of disability, factors like onset of disability, nature, and visibility of disability, educational experiences and resources available to deal with disabling conditions.

Keywords: disability, stigma, in-group identification, social identity

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5404 The Meaning Structures of Political Participation of Young Women: Preliminary Findings in a Practical Phenomenology Study

Authors: Amanda Aliende da Matta, Maria del Pilar Fogueiras Bertomeu, Valeria de Ormaechea Otalora, Maria Paz Sandin Esteban, Miriam Comet Donoso

Abstract:

This communication presents the preliminary emerging themes in a research on political participation of young women. The study follows a qualitative methodology; in particular, the applied hermeneutic phenomenological method, and the general objective of the research is to give an account of the experience of political participation as young women. The study participants are women aged 18 to 35 who have experience in political participation. The techniques of data collection are the descriptive story and the phenomenological interview. With respect to the first methodological steps, these have been: 1) collect and select stories of lived experience in political participation, 2) select descriptions of lived experience (DLEs) in political participation of the chosen stories, 3) to prepare phenomenological interviews from the selected DLEs, 4) to conduct phenomenological thematic analysis (PTA) of the DLEs. We have so far initiated the PTA on 5 vignettes. Hermeneutic phenomenology as a research approach is based on phenomenological philosophy and applied hermeneutics. Phenomenology is a descriptive philosophy of pure experience and essences, through which we seek to capture an experience at its origins without categorizing, interpreting or theorizing it. Hermeneutics, on the other hand, may be defined as a philosophical current that can be applied to data analysis. Max Van Manen wrote that hermeneutic phenomenology is a method of abstemious reflection on the basic structures of the lived experience of human existence. In hermeneutic phenomenology we focus, then, on the way we experience “things” in the first person, seeking to capture the world exactly as we experience it, not as we categorize or conceptualize it. In this study, the empirical methods used were: Lived experience description (written) and conversational interview. For these short stories, participants were asked: “What was your lived experience of participation in politics as a young woman? Can you tell me any stories or anecdotes that you think exemplify or typify your experience?”. The questions were accompanied by a list of guidelines for writing descriptive vignettes. And the analytical method was PTA. Among the provisional results, we found preliminary emerging themes, which could in the advance of the investigation result in meaning structures of political participation of young women. They are the following: - Complicity may be inherent/essential in political participation as a young woman; - Feelings may be essential/inherent in political participation as a young woman; - Hope may be essential in authentic political participation as a young woman; - Frustration may be essential in authentic political participation as a young woman; - Satisfaction may be essential in authentic political participation as a young woman; - There may be tension between individual/collective inherent/essential in political participation as a young woman; - Political participation as a young woman may include moments of public demonstration.

Keywords: applied hermeneutic phenomenology, hermeneutics, phenomenology, political participation

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5403 Motivation for Higher Education: An Exploration of Lived Experiences of Students with Disabilities in a Ghanaian University

Authors: Yaw Akoto

Abstract:

The social construction of disability in a Ghanaian society has created a restriction on the development of the academic potentials of persons with disabilities. Ghanaian societal perceptions position persons with disabilities as needy, evil, feeble and 'abnormal' that a person with disability cannot contribute anything meaningful to their own development, society, and the nation as well. Almost all Ghanaian cultures believe the Gods visit evil people with disability as such they erect barriers that limit them to select and enroll in education. The few people with disabilities who gain admission to schools drop out due to these barriers erected by the society and institutions. However, there are very few of these students who are able to pursue their education at the higher education level despite these challenges. This qualitative study explores the motivation of students with disabilities to select and enroll in a Ghanaian university. The study used semi-structured interview to solicit information from students with disabilities in a Ghanaian university. Although the quality of students with disabilities experience was affected by culture, discrimination, marginalisation, and lack of support, the prospect of using themselves as role models, employment opportunities and family impingement were among others that pushed them to embark on their educational journey. The findings of this study have implications for societal and institutional levels for restructuring and refining societal perception and institutional policies on disabilities.

Keywords: beliefs, Ghanaian university, social construction, students with disabilities

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