Search results for: sibling’s lived experience of disability

Authors: Surendra Kumar Patel

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Disability is not just a health problem; it is a complex phenomenon, reflecting the interaction between features of a person’s age and physiology. Population ageing is a major demographic issue for India in the 21st century. Older population of India constituted 8% of total population, while 5.19% has affected by disability of older age group. Objective of the present research paper is to examine the state wise differential in disability among 60+ population and to access the health care of disabled population especially the 60+ disabled persons. The data sources of the present paper are census 2001 and 2011. For analyzing the state wise differentials by disability types and comparative advantage of data, rate, ratio, and percentage have been used. The Standardized Index of Diversity of Disability (SIDD) studies differential and diversity in disability. The results show that there are 5.19% persons have disability among 60+ population and sex differential not very significant, as it is 5.3 % of male and 5.05% in female in India but place of residence shows significant variation from 2001 to 2011 census. There is huge diversity in disability prevalence among 60+ in India, highest in Sikkim followed by Rajasthan, approximately, they comprise 11%, and the lowest found in Tamil Nadu as 2.53%. This huge gap in prevalence percentage shows the health care needs of highly prevailing states.

Keywords: disability, Standardized Index of Diversity of Disability (SIDD), differential and diversity in disability, 60+ population

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Authors: Dennis Glen G. Ramos, Angelica S. Mendoza, Juliene Marie A. Alvarez, Claudette A. Nagal, Kayzee C. Blanza, Jayson M. Narbonita, John Anthony D. Dayot, Rebecca M. Reduca, Jermaine Jem M. Flojo, Michael E. Resultan, Clyde C. Fomocod, Cindy A. Vinluan, Jeffrie Aleona Mari C. Maclang

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RN HEALS, an acronym for Registered Nurses for Health Enhancement and Local Service, is expected to address the shortage of skilled and experienced nurses in 1,221 rural and unserved or underserved communities for one year. The study would like to explore the lived experiences of the nurses deployed under this program.The study is a Descriptive Qualitative Research. Interview was utilized as a data gathering tool. Six community nurses who are deployed under the RN HEALS program are included in the study. Van Kaam method was used as data management. Data gathering was done from October to December 2013.Two themes emerged in the study; Value and Challenge. Under Value, it had three sub-themes; Job Satisfaction, Upholding Competency, including Personal Development and Professional Growth, and Employability. While under Challenge, it had one sub-theme, Job Stress. The study concludes that nurses adapt to strategies to pursue personal and professional competence and an evolutionary journey. The researchers recommend that Health Administrators improve the work environment of nurses to lessen the challenges experienced by nurses.

Keywords: lived experience, RN HEALS, health enhancement, local service

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Authors: Cara Williams

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In 2006, the UK Labour government published a Green Paper introducing Employment and Support Allowance (ESA) as a replacement for Incapacity Benefit (IB), as well as a new Work Capability Assessment (WCA); signalling a controversial political and economic shift in disability welfare policy. In 2016, the Conservative government published Improving Lives: The Work, Health, and Disability Green Paper, as part of their social reform agenda, evidently to address the ‘injustice’ of the ‘disability employment gap’. This paper contextualises ESA in the wider ideology and rhetoric of ‘welfare to work’, ‘dependency’ and ‘responsibility’. Using the British ‘social model of disability’ as a theoretical framework, the study engages in a critical discourse analysis of these two Green Papers. By uncovering the medicalised conceptions embedded in the texts, the analysis has revealed ESA is linked with late capitalisms concern with the ‘disability category’.

Keywords: disability, employment, social security, welfare

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Authors: Luke Galvani

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The cultural representations of people with disabilities are frequently biased which can lead to a general misunderstanding of disability. Representations of disabled deviance are especially problematic given that they typify or generally abstract disability as being abnormal, which then begin to take root in the cultural mind. This study utilizes critical discourse analysis to investigate how discourses of disabled sexual deviance are promoted within two major films that portray disabled sexual subjects. The findings indicate that perceptions of disabled sexual deviance are heightened by cinematic representations of sex and disability, which characterize disabled sexual expression as being undesirable due to the ephemeral and abnormal qualities ascribed to it.

Keywords: deviance, disability, discourse analysis, sexuality

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Authors: Su-Lin Yu

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In recent years, we have witnessed the growing scholarship on transnational theorizing and activism within disability. In particular, the universalizing discourses of disability formulated in the Global North seem inadequate in engaging the vast diversity of discourses of disability that emerge in global and local policies as well as the everyday experiences of disabled people in the Global South. This study will further consider the future possibilities of how Taiwanese and global disability studies might interchange disability knowledge. First, this study will determine how a local literature of disability can be formed in Taiwan by examining life writings written by Taiwanese disabled women. Both the texts and the personal experiences are treated as social products which can, through their discourses, offer insight into the socio-cultural practices and norms of disability and womanhood in Taiwan. This paper argues that more than by the impairment in itself, the experiences of disabled women are shaped by the social and cultural discourses and practices that define disability and womanhood as well as the normative roles, places, and contexts associated with them. Simultaneous analysis of disability and womanhood exemplifies the way in which disability operates in a complex interaction with the socio-cultural discourses and practices of womanhood, thus producing gender-differentiated disabling obstacles for disabled women. Another purpose of this study is to gain an understanding of the transformative experience of women with disabilities and their perceptions of the self. Designed to provide positive, realistic pictures of the lives of women with disabilities and the social, economic, and political issues they face, their life writings demonstrate how they as disabled women simultaneously struggle with writing a new identity and creating an ethical narrative. These strong and articulate women construct narratives that attempt to recount the remarkable journey that transformed them from dependent women to community activists and writers who speak forcefully about the needs of people with disabilities. More than a story of one woman's struggle for independence, their writing, then, is a testimony to the importance of community building and organizing to enable local people with disabilities to live fulfilling lives.

Keywords: gender, disability, representation, agency

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Authors: Mahmood Shamshiri

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While visual sensation is the key gate for human-being to understand the world, visual impairment is one of the common cause of disability around the world. There is no doubt about the importance of eye sight in daily life among people, even it is understood the best gift of God to human-beings in many societies. Blind people are admitted to hospital for different health issues. Nurses and other health professionals who provide care for this group of patients need to understand their patients. Understanding the lived experience of blind people helps nurses to expand their knowledge regarding blind patients in order to provide a holistic care and improve the quality of care for blind patients. This phenomenological inquiry aimed to describe the meaning of discipline in daily life of blind people admitted in hospital. An interpretive phenomenology underpinned the philosophical approach of the study. While the interpretive phenomenology played as an umbrella role in the overall point of the study, the six methodical activities which introduced by van Manen helped the researchers to conduct the study. ‘Disciplined care for disciplined patients’ was the main theme emerged from dialogues of blind patients about their daily life in the hospital. Almost all of participants called themselves as disciplined people. The theme ‘disciplined care for disciplined patients’ appeared from four sub-themes including discipline through careful touching and listening, discipline as the ideal way of existence, discipline the preferred way of being independent, desire to take disciplined and detailed care, reactions to the undisciplined caring culture. This phenomenological inquiry to the experiences of patients with blindness in hospital revealed that they commonly are disciplined people and want to be cared in well-organized caring environment. Furthermore, they need to be familiar with the new caring environment. Well-organized and familiar environment help blind patients to increase the level of independency. In addition, blind patients prefer a detail informed and disciplined caring culture. Health professionals have to consider the concept of disciplined care in order to provide a holistic and comprehensive competent care.

Keywords: disciplined people, disciplined care, lived experience, patient with blindness

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Authors: Jennifer Natalya Fink

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Since the racial reckoning of 2020, almost every major educational institution has incorporated diversity, equity, and inclusion (DEI) principles into its administrative, hiring, and pedagogical practices. Yet these DEI principles rarely incorporate explicit language or critical thinking about disability. Despite the fact that according to the World Health Organization, one in five people worldwide is disabled, making disabled people the larger minority group in the world, disability remains the neglected stepchild of DEI. Drawing on disability studies and crip theory frameworks, the underlying causes of this exclusion of disability from DEI, such as stigma, shame, invisible disabilities, institutionalization/segregation/delineation from family, and competing models and definitions of disability are examined. This paper explores both the ideological and practical shifts necessary to include disability in university DEI initiatives. It offers positive examples as well as conceptual frameworks such as 'divers ability' for so doing. Using Georgetown University’s 2020-2022 DEI initiatives as a case study, this paper describes how curricular infusion, accessibility, identity, community, and diversity administration infused one university’s DEI initiatives with concrete disability-inclusive measures. It concludes with a consideration of how the very framework of DEI itself might be challenged and transformed if disability were to be included.

Keywords: diversity, equity, inclusion, disability, crip theory, accessibility

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Authors: Marian Ubaldo, Venise Gonzales, Aileen Lovendino

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In response to an identified need in the psychological literature for current research on topics related to same-sex lived experiences, the study aims to give knowledge about Non-mainstream Gay and Non-mainstream Lesbian, or those homosexuals who do not conform with norms, in relation to courtship than to focus on heterosexuals’ courtship. Moreover, the aim of this study is to explore the experience of courtship as it is mediated by the personal meanings that Non-mainstream Homosexuals attribute to it. Also, a comparison of courtship between Non-mainstream Gays and Non-mainstream Lesbians covers the study. A total of ten self-identified Non-mainstream gay and lesbian participated in the study and was interviewed with an open ended question. Interpretative Phenomenological Analysis was used in the study to capture the quality and texture of individual lived experiences. The results revealed similarities and differences in the lived experiences of Non-mainstream Gays and Lesbians when compared. The research findings have found that the research participants lived experiences in relation with Courtship are somehow similar and only differ in terms of sexual attraction. Non-mainstream Gays tend to follow a more sexual dating script while Non-mainstream Lesbians builds relationship through friendship or follows a ‘friendship’ script. Findings were compared with literature on dating and relationships with a large population of Gays and Lesbians to identify points of consistency and inconsistency. The implication of the results and recommendation for future researcher were given.

Keywords: non-mainstream gays, non-mainstream lesbian, courtship, heteronormativity, dating script

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Authors: Cate MacMillan, Nicholas J. Stevens, Johanna Rosier, Steven Boyd

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Choosing where to live is an important decision for anybody, however, this decision is more complex if you are an adult with intellectual disability. Our research asked adults with intellectual disability, parents and carers and disability, housing and built environment decision makers what they considered important in deciding where to live. If medical advances continue to improve the longevity of adults with intellectual disability, many of these adults will outlive their parents. With appropriate community support, and in appropriately designed neighbourhoods, many will be able to live independently. Our research suggests that the key to achieving independent living as an adult with intellectual disability is not so much about the house but the type of neighbourhood and its design. This paper presents the results of interviews and details a practical approach which will better inform urban development decision-makers in establishing safe, inclusive and accessible neighbourhood design.

Keywords: inclusion, independent living, intellectual disability, neighbourhoods, systems thinking, urban design and planning

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Authors: Ebele V. Okoli, Emmanuel Nwobi, Dozie Ezechukwu, Ijeoma Itanyi

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One in seven people worldwide suffer from a disability. 80% of people with disabilities live in developing countries. Negative attitudes and misconceptions among health-care providers constitute barri¬ers to optimal health care for people with disabilities. This underscores the relevance of a study of the attitude of Nigerian medical students towards disability and their willingness to work in the disability sector. This was a descriptive cross-sectional study conducted among 254 penultimate and final year medical students of a university in southeastern Nigeria. The mean age of the students was 24.8 ± 3.12 years. Majority of the students were male (75.2%), single (96.9%), of the Igbo tribe (86.6%), Christian (97.6%) and grew up in urban areas (68.1%). Results indicated that the medical students had a predominantly positive attitude towards people with disability as 73.8% had a positive attitude and mean attitude score was 67.03 ± 0.14 (positive attitude = 61 – 120, negative attitude = 0 - 60). Chi-square analysis did not show any significant effect of demographic and social factors on the students’ attitude towards People with Disabilities. The students were mostly willing to work in areas that address the challenges of people with disability (70.4%) but a greater proportion had never heard about Disability Studies (67.5%). About a third of the students (33.2%) would like to travel abroad to practice in the disability sector. Conclusions: The students generally had a positive attitude towards people with disability and a greater percentage were willing to work in the disability sector in their future career. About two-thirds had however, never heard about disability studies. There was some potential for brain drain among the students as a third of the population intended to practice abroad on graduation.

Keywords: attitudes, career interest, disability, medical students

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Authors: Kwanele Shishane

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Numerous countries are faced with challenges such as disease, poverty and other social ills and inadequate government support to meet the needs of the entire population. In developing countries, the concept of child-headed households has become a ubiquitous phenomenon and lived experience. As such, migration of children is common in these countries. This study aims to explore the lived experiences of unaccompanied adolescent migrant, with regards to the utilization of health care in South Africa. The objectives of the study are to examine the lived experiences of health care utilization by unaccompanied adolescent migrants; examine the predisposing, enabling and need factors influencing utilization of health care among unaccompanied adolescent migrants; examine the social and cultural influences on health care utilization among unaccompanied adolescent migrants; and identify the health system barriers to utilization of health care by unaccompanied adolescent migrants. Andersen and Newman’s Model of Health Care Utilization (1995) which explains factors determining the utilization of healthcare will provide the theoretical framework for the empirical investigation of this study. The target population for this study is unaccompanied adolescent migrants, seeking to access services from migrant service organizations in four provinces in South Africa (Limpopo, KwaZulu-Natal, Free State, and Gauteng). Participants will be selected using a purposive sampling procedure. A qualitative research approach utilizing a descriptive phenomenological epistemology will be utilized in this study. Data will be collected through conducting in-depth interviews and focus group discussions with unaccompanied migrant adolescents, to explore their lived experiences related to access and utilization of health care, as an unaccompanied migrant in SA. The qualitative data will be analysed using Tech’s (1990) thematic analytical approach.

Keywords: health care utilisation, unaccompanied migrant youth, South Africa, lived experiences

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Authors: Ali Aldakhil

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This paper explores the many faces of the barriers and exclusionary attitudes and practices that disabled teachers and students experience in a school where they teach or attend. Critical disability studies and inclusive education theory were used to conceptualise this inquiry and ground it in the literature. These theories were used because they magnify and expose the problems of disability/disablism as within-society instead of within-individual. Similarly, disability-first language was used in this study because it seeks to expose the social oppression and discrimination of disabled. Data were generated through conducting in-depth semi-structured interviews with six disabled teachers who teach disabled children in a Saudi mainstream school. Thematic analysis of data concludes that the school is fettered by disabling barriers, attitudes, and practices, which reflect the dominant culture of disablism that disabled people encounter in the Saudi society on a daily basis. This leads to the conclusion that overall deconstruction and reformation of Saudi mainstream schools are needed, including non-disabled people’s attitudes, policy, spaces, and overall arrangements of teaching and learning.

Keywords: disablism, disability studies, mainstream schools, Saudi Arabia

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Authors: Janet B. Badong-Badilla

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In Jesuit universities, laypersons, who come from the same or different faith backgrounds or traditions, are considered as collaborators in mission. The Jesuits themselves support the contributions of the lay partners in realizing the mission of the Society of Jesus and recognize the important role that they play in education. This study aims to investigate and generate particular notions and understandings of lived experiences of being a lay partner in Jesuit universities in the Philippines, particularly those involved in higher education. Using the qualitative approach as introduced by grounded theorist Barney Glaser, the lay partners’ concept of being a partner, as lived in higher education, is generated systematically from the data collected in the field primarily through in-depth interviews, field notes and observations. Glaser’s constant comparative method of analysis of data is used going through the phases of open coding, theoretical coding, and selective coding from memoing to theoretical sampling to sorting and then writing. In this study, Glaser’s grounded theory as a methodology will provide a substantial insight into and articulation of the layperson’s actual experience of being a partner of the Jesuits in education. Such articulation provides a phenomenological approach or framework to an understanding of the meaning and core characteristics of Jesuit-Lay partnership in Jesuit educational institution of higher learning in the country. This study is expected to provide a framework or model for lay partnership in academic institutions that have the same practice of having lay partners in mission.

Keywords: grounded theory, Jesuit mission in higher education, lay partner, lived experience

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Authors: Nino M. Pizarro

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To the author’s knowledge, despite the written documents about Marist spirituality/charism, nothing has been done concerning a clear theoretical framework that highlights Marist spirituality/charism from the perspective or lived experience of the lay Marists of St. Marcellin Champagnat. The participants of the study are the lay Marist - educators who are from Marist Schools in the Philippines. Since the study would like to find out the respondents’ own concepts and meanings about Marist spirituality/charism, qualitative methodology is considered the approach to be used in the study. In particular, the study will use the qualitative methods of Barney Glaser. The theory will be generated systematically from data collection, coding and analyzing through memoing, theoretical sampling, sorting and writing and using the constant comparative method. The data collection method that will be employed in this grounded theory research is the in-depth interview that is semi-structured and participant driven. Data collection will be done through snowball sampling that is purposive. The study is considering to come up with a theoretical framework that will help the lay Marists to deepen their understanding of the Marist spirituality/charism and their vocation as lay partners of the Marist Brothers of the Schools.

Keywords: grounded theory, Lay Marists, lived experience, Marist spirituality/charism

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Authors: Prerna Mohan Saxena, Avni Joshi, Raju K Parasher

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Disability is a state of decreased functioning associated with disease, disorder, injury, or other health condition, which in the context of one’s environment is experienced as an impairment, activity limitation, or participation restriction. With the concept of disability evolving over the years, the current ICF model of disability has integrated this concept into a comprehensive whole of multiple dimensions of human functioning, including biological, psychological, social, and environmental aspects. Wheelchair basketball is one of the greatest examples of adapted sports for the disabled. Through this study, we aim to evaluate the functional performance and self-esteem levels in differently-abled pediatric wheelchair basketball players, providing an insight on their abilities and deficits and how they can be worked on at a larger level to improve overall performance. The study was conducted on 9 pediatric wheelchair basketball players at Amar Jyoti school for inclusive education Delhi their physical performance was assessed using a battery of tests, and physical self esteem was assessed using the Physical self-description instrument (PSDQ-S). Results showed that 9 participants age ranged between 10-21 years, mostly males with BMI ranging between 16.7 to 28.9 kg/m2 most of them had the experience of 5 to 6 years of playing the sport. The data showed physical performance in accordance to years of experience of playing, physical self esteem showed a different perspective, with experience players scoring less on it. This study supports a multidimensional construct of physical performance and physical self-esteem, suggesting that both may be applied on the wheelchair basketball players at competitive levels.

Keywords: ase series, physical performance, physical self-esteem, wheelchair basketball

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Authors: Caroline Dickson

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While adolescence can be a challenging time, it may also be a time of opportunity. Whereas adolescents with a physical disability negotiate the adolescent developmental stage with similar issues to able-bodied adolescents, they additionally may encounter developmental problems which may impede their adulthood. In part due to the restricted opportunities disabled adolescents experience, they may experience difficulty with mastering this developmental stage. As is well documented, health and wellbeing are positively associated with participating in physical activity. However, the little research available suggested that Pacific adolescents generally are participating in less physical activity than adolescents of other ethnic groups. Objective/Study: The main aim of the study (from a larger mixed method study), was to explore physical activity participation in Pacific adolescent girls with a physical disability in relation to their physiological and psychological wellbeing. The qualitative descriptive study comprised of seven interviews with Pacific adolescent girls and their mothers in a family setting and also included the providers of services to Pacific girls with a physical disability. Including the providers of disability services allowed the researchers to identity a further understanding into challenges of participation for the Pacific adolescent girls and their families while the girls were attempting to participate in physical activity. The purpose of the talanoa (face-to-face interviews that were deemed informal) was to identify partaking and factors influencing participation in physical activity, whilst listening to the voices of the participants. The stories revealed the multitude of factors that influenced physical activity for the Pacific girls with a physical disability. Results: Findings from the qualitative descriptive study found that through physical activity, the Pacific adolescent girls with a physical disability experienced benefits from participation. The findings suggested that these girls wanted to participate in physical activity and clearly indicated the physical activities they preferred. Amongst the physiological and psychological benefits of the Pacific adolescents engaging in physical activity, the adolescents were able to develop positive social relationships, experience autonomy, and generally, their self-worth improved while building confidence. Nevertheless, the adolescents experienced a multitude of factors impeding their engagement in physical activity including cultural stigmas. Their participation was influenced by the interplay of a range of gender, cultural, age-related (adolescence) and socio-economic factors alongside policy and structurally related constraints. Conclusion: Physical activity has the potential to improve the general physiological and psychological health of all adolescents. It should be prioritised particularly in vulnerable populations where they may have limited access. As the Pacific adolescents with a physical activity are dependent on their families for physical activity participation, it is imperative the family be included and consulted. To increase participation, and reduce sedentary behaviours, factors influencing both participation and non-participation need to be considered.

Keywords: Pacific adolescent girls, physical activity, physical disability, qualitative descriptive study

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Authors: Marthella Rivera Roidatua

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Since the release of Convention on the Rights of Persons with Disabilities in 2006, disability became a mainstreamed global issue. Many developed countries have shown the continuous effort to improve their disability employment policy, for example, the US and the UK with their integrated support system through disability benefits. Relative little recent research on developing country is available. Surprisingly, Indonesia, just enacted the Law No.8/2016 on Disability that bravely highlighted on integrating disabled people into the workforce. It shows a positive progress shifting traditional perspective to what Tom Shakespeare’s concept of a social model of disability. But, the main question is how can this law support the disabled people to access and maintain paid work. Thus, besides the earlier literature reviews, interviews with leading sectors, Ministry of Social Affairs and Ministry of Manpower, was conducted to examine government’s attitude towards the disabled worker. Insights from two local social enterprises on disability were also engaged in building better perspective. The various source of data was triangulated then analysed with a thematic approach. Results were encouraging the Indonesian government to have a better collaboration with other impactful local organisations in promoting the disability employment. In the end, this paper also recommends the government to make a reasonable adjustment and practical guideline for companies in hiring disabled.

Keywords: disability, employment, policy, Indonesia, collaboration, guidelines

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Authors: Barbara A. Perry

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In 1996, the New Zealand government and the Ministry of Education announced that they were setting up a "world class system of inclusive education". As a parent of a son with high and complex needs, a teacher, school Principal and Disability studies Lecturer, this author will track the changes in the journey towards inclusive education over the last 20 years. Strategies for partnering with families to ensure educational success along with insights from one of those on the crest of the wave will be presented. Using a narrative methodology the author will illuminate how far New Zealand has come towards this world class system of inclusion promised and share from personal experience some of the highlights and risks in the system. This author has challenged the old structures and been part of the setting up of new structures particularly for providing parent voice and insight; this paper provides a unique view from an insider’s voice as well as a professional in the system.

Keywords: disability studies, inclusive education, special education, working with families with children with disability

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Authors: Marcello Lussana

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Closer is a wireless system developed by the “Design Research Lab” of the UdK Berlin that is able to detect the proximity and touch between two (or more) persons. We have been using this system for one performance and one installation: in both cases, the proximity and touch events of the two participants have been sonified using the software Supercollider. In this paper, we are going to focus on the actual experience of the participants involved, especially related to the awareness of their body, their level of proprioception and how they felt in their body and in connection with the other person. In order to give value to the lived experience of the participant, a phenomenological method described and developed by Professor Claire Petitmengin has been used. This strategy allowed the interviewees to become aware of their subjective experience, and describe it with great precision. This is essential in order to understand the actual state of consciousness of the users. Our aim is to research the senses of proprioception, touch, and proximity: as they all involve a pre-reflective state of consciousness, they are central for the understanding of human perception. The interviews revealed how this experience could improve and increase proprioception and awareness of your body.

Keywords: interactive sound, phenomenology, pre-reflective, proprioception, subjective experience

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Authors: Farzaneh Yazdani, Nastaran Yazdani, Laya Nobakht

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The aim of this study was to explore the changes that may happen in students attitudes regarding disability after attending the module ‘Disability: theories, nature and experiences’ designed around reflective self-awareness exercises. Literature indicates enhanced knowledge does not automatically lead to changes in attitude. Health care professionals are the most significant people to instil hope in their clients to pursue a happy life. As an advocate for people with disability, health care professionals need to believe themselves in people with disability being able to pursue a happy life as an abled body does. Researchers aimed to explore the impact of the ‘Disability’ module using discussion and reflective exercises, on students’ way of thinking and possible changes in attitude towards disability. Students were asked to write stories from the beginning and after completing the module. A thematic analysis was applied to identify the students’ way of communicating their thoughts and feelings about disable-bodied /disability before and after the module. Three major themes were identified to represent the differences before and after attending the module as: problem /solution oriented approach towards perceived problems, separating/ integrating disable/able-bodied, passive/ active role of disable-bodied and society.

Keywords: qualitative study, reflection, rehabilitation, thematic analysis

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Authors: Wendy Kramer

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How and when a donor-conceived person (DCP) learns about their conception significantly affects their experiences and choices, including whether they'd consider using a donor or donating their own gametes. Objective: We sought to identify factors that positively and negatively impact the experience of being a DCP. We sought to determine if DCP would consider utilizing donor gametes themselves, if unable to conceive spontaneously and if DCP were likely to be donors themselves. Materials and Methods: A cross-sectional survey of adult DCP was disseminated to members of the Donor Sibling Registry. The survey consisted of 31 items including whether experience as DCP was positive or negative, the willingness to use donor gametes if spontaneous conception was not an option, and questions regarding donating gametes. Results: 529 people (81.7% female) completed the survey, the median age was 28 years (range 18-77 years) and 94.7% were conceived via donor sperm. Most felt "neutral" (31.6%), "positive" (26.3%) or "very positive" (20.8%) about being a DCP regardless of donor type. While most found out about being a DCP after age 18 (63.4%), those with a positive experience were more likely to "have always known" (40.7%). Conclusions: People conceived by donor-assisted reproduction are more likely to have neutral to positive overall feelings surrounding their conception if they are told at a very young age about their donor-conceived origins by a family member. The majority of DCP are willing to adopt but would not consider using donated gametes themselves if unable to conceive spontaneously. DCP are not likely to become donors themselves despite the majority of DCP having a high positive feeling regarding being donor-conceived.

Keywords: donor conception, donor offspring, sperm donation, egg donation, donor-conceived people

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Authors: Fumiko Kojima, Shuji Fujimoto

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Anisakiasis is a disease caused by infection with an anisakid larvae, mostly Anisakis simplex. The larvae commonly infect in marine fish and the disease is frequently reported in areas of the world where fish is consumed raw, lightly pickled or salted. In Japan, people have the habit of eating raw fish such as ‘sushi’ or ‘sashimi’, so they have more chance of infection with larvae of anisakid nematodes. There are three sibling species in A. simplex larvae, namely, A. simplex sensu stricto (Asss), A. pegreffii (Ap) and A. simplex C. It was revealed that Ap is dominant among the larvae from fish (Scomber japonics) in the Japan Sea side and Asss is dominant among those of the Pacific Ocean side conversely. Although anisakiasis has happened in Japan among both the Japan Sea side area and the Pacific Ocean side area. The aim of this study was to investigate genetic variations between the siblings (Asss and Ap) and within the same sibling species by random amplified polymorphic DNA (RAPD) technique. In order to investigate the genetic difference among the each A. simplex larvae, we used RAPD technique to differentiate individuals of A. simplex obtained from Scomber japonics fish those were caught in the Japan sea (Goto Islands in Nagasaki Prefecture) and the cost of Pacific Ocean (Kanagawa Prefecture). The RAPD patterns of the control DNA (Genus Raphidascaris) were markedly different from those of the A. simplex. There were differences in amplification patterns between Asss and Ap. The RAPD patterns for larvae obtained from fish of the same sea were somewhat different and variations were detected even among larvae from the same fish. These results suggest the considerable high genetic variability between Asss and Ap and the possible existence of genetic variation within the sibling species.

Keywords: Anisakiasis in Japan, Anisakis simplex, genomic identification, PCR-RAPD

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Authors: Anita Ghai

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The present paper explores the imperative to establish disability studies as an independent area of academic inquiry in India through the establishment of specific programmes in disability studies. The case study of the efforts made by the Ambedkar University, Delhi, to develop such programs and courses shall be used to substantiate this imperative as well as to explore some of the challenges entailed. The paper shall explore the certain extent aspects of relevant scholarship in the area of disability studies in India today and critically reflect on the perspectives of disability in this scholarship. The study of disability in India has hitherto been the prerogative of special education, rehabilitation psychology, and social work departments. While instances of these departments adopting critical approaches to disability can be identified, their empirical focus has perpetuated the production of disability as the site of suffering and oppression. The complex cultural, phenomenological, historical and economic discourses within which disability is embedded can be better captured within distinctive programmes that have disability sui generis as their focus. Such programs would foreground disability as an epistemology, which universalizes the study of disability from disabled people alone to an analysis of various other groups who have been historically marginalized. It will also play an important role in recuperating disability from a state of alterity. The interdisciplinary nature of disability studies offers an opportunity to integrate perspectives from the humanities and the social sciences in the proposed programs. Some of the challenges or rather aspects of reflection that emerge in the course of developing these programs are the criteria for determining the suitability of faculty to teach these programs and the challenges in identifying faculty and in addressing any apprehensions about career prospects that prospective students might have. The manner in which these concerns are being addressed through the collaboration of expertise as well as through the interdisciplinary and flexible nature of the program shall be addressed in the course of the paper. In conclusion, the paper shall foreground the need for disability studies programs in India, the re-appropriation of existing scholarship in the process of formulation these programs, emerging concerns and the manner in which these concerns will be addressed.

Keywords: academia, disability studies, epistemology, India

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Authors: Hector Jose Velazquez-Gonzalez, Norma Maldonado-Santiago, Laura Pietri-Gomez

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Cancer is one of the first cause of death in the world, most of them are women. In Puerto Rico, there is a permanent controversy on the conceptuation of what really involves a disability, also in when a chronic illness, like cancer, should be considered a disability. The aim of the research was to identify functional limitation in 50 women survivors of cancer. In turn, to know the meanings that 6 women attributed to cancer with a focus on functionality. We conducted a mix method research based on surveys and narratives. We administered the World Health Organization Disability Assessment, version 2.0, which obtained a Cronbach’s alpha of .949 on the general scale, and from .773 to .956 on the six domains. The domain that obtained the highest average was social participation (M= 33.89, SD= 20.434), but it was not significant in the disability percentage. Also, there was no significance in the disability percentage in the other five domains. In a matter of meanings, we conduct a semistructured interview to 6 participants. All of them do not refer to cancer as a disability, either they do not know that in Puerto Rico cancer is considered as a disability by the law. However, participants agree that cancer at the time of treatment and subsequent to it, has significant effects on functional limitations (fatigue, pain, cognitive limitations, and weakness, among others. Psychooncologic practice should encourage the constant assessment of the functionality to identify the needs that emerge from oncological diagnosis. So that psychosocial intervention could be considered as critical in cancer treatment to promote a better quality of life and well-being in a person with cancer.

Keywords: cancer, Puerto Rico, disability, psychosocial approach

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Authors: Chimuanya Osuji, Kido Uyamasi, Morgan Bradley

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Introduction: Obesity is a major risk factor for many chronic diseases, with higher rates occurring among certain populations. Even though disparities in obesity rates exist for those with disabilities, few studies have assessed the association between disability and obesity status. This study aims to examine the association between type of disability and obesity status among US adults during the Covid-19 pandemic (2019-2021). Methods: Data for this cross-sectional study was obtained from the 2019, 2020 and 2021 NHIS. Multinomial logistic regressions were used to assess the relationship between each type of disability and obesity status (reference= normal/underweight). Each model adjusted for demographic, health status and health-related quality of life variables. Statistical analyses were conducted using SAS version 9.4. Results: Of the 82,632 US adults who completed the NHIS in 2019, 2020, and 2021. 8.9% (n= 7,354) reported at least 1 disability-related condition. Respondents reported having a disability across vision (1.5%), hearing (1.5%), mobility (5.3%), communication (0.8%), cognition (2.4%) and self-care (1.1%) domains. After adjusting for covariates, adults with at least 1 disability-related condition were about 30% more likely to have moderate-severe obesity (AOR=1.3; 95% CI=1.11, 1.53). Mobility was the only disability category positively associated with mild obesity (AOR=1.16; 95% CI=1.01, 1.35) and moderate/severe obesity (AOR=1.6; 95% CI=1.35, 1.89). Individuals with vision disability were about 35% less likely to have mild obesity (AOR=0.66; 95% CI=0.51, 0.86) and moderate-severe obesity (AOR=0.66; 95% CI= 0.48, 0.9). Individuals with hearing disability were 28% less likely to have mild obesity (AOR=0.72; 95% CI= 0.56, 0.94). Individuals with communication disability were about 30% less likely to be overweight (AOR=0.66; 95% CI=0.47, 0.93) and 50% less likely to have mild obesity (AOR=0.45; 95% CI= 0.29, 0.71). Individuals with cognitive disability were about 25% less likely to have mild obesity and about 35% less likely to have moderate-severe obesity. Individuals with self-care disability were about 30% less likely to be overweight. Conclusion: Mobility-related disabilities are significantly associated with obesity status among adults residing in the United States. Researchers and policy makers should implement obesity intervention methods that can address the gap in obesity prevalence rates among those with and without disabilities.

Keywords: cognition, disability, mobility, obesity

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Authors: Nyla Anjum, Humaira Bano

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Disability, regardless of its type and nature limits one or two significant life activities. These limitations constitute risk factors for suicide. Rate and intensity of problem upsurges in critical age of adolescence. Researches in the field of mental health over look problem of suicide among persons with disability. Aim of the study was to investigate prevalence and risk factors for suicide among adolescents with disability. The study constitutes purposive sample of 106 elements of both gender with four major categories of disability: hearing impairment, physical impairment, visual impairment and intellectual disabilities. Face to face interview technique was opted for data collection. Other variable are: socio-economic status, social and family support, provision of services for persons with disability, education and employment opportunities. For data analysis independent sample t-test was applied to find out significant differences in gender and One Way Analysis of variance was run to find out differences among four types of disability. Major predictors of suicide were identified with multiple regression analysis. It is concluded that ideation, plans and attempts of suicide among adolescents with disability is a multifaceted and imperative concern in the area of mental health. Urgent research recommendations contains valid measurement of suicide rate and identification of more risk factors for suicide among persons with disability. Study will also guide towards prevention of this pressing problem and will bring message of happy and healthy life not only for persons with disability but also for their families. It will also help to reduce suicide rate in society.

Keywords: suicide, risk factors, adolescent, disability, mental health

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Authors: Okupe Temitope Oluwaseun

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Purpose: The paper determines the existing position of attitudes to disability in a Nigerian organisation. It further assessed the progress that has been made in relation to employment matters as an indication of the Nigerian employment market. Design/methodology/approach: The paper discusses an investigative study which adopted survey research-based approach involving a Nigerian Management Agency. Findings: The paper finds that, although there have been some steps forward, not much has been done with regard to disability equality in the Nigerian employment market. Lack of education, lack of implementing and enforcing the law, inadequate awareness process and international culture have contributed to the current situation. International culture, in particular, is one of the major attributes to lack of disability equality. For example, in the rural areas, the majority of people believe that disability is a form of witchcraft. This paper argues that these traditions, attitudes, and beliefs make it difficult for an organisation to recruit people with disability. Practical Implications: This paper provides a deeper understanding of how organisations can address attitudes to disability within the workplace in Nigeria. The research findings give a fresher perspective on some of the issues associated with disability in this country. This increased understanding has potential to improve the education and training of staff in this area. Originality/value: A paper which human resources managers in Nigerian organisation and the rest of the world can reflect upon in order to assess their own organisation attitudes to the employment of staff with a disability.

Keywords: disability, international culture, Nigeria, attitudes

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Authors: Irene Carter, Roy Hanes, Judy MacDonald

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Considering that disability is universal and people with disabilities are part of all societies; that there is a connection between the disabled individual and the societal; and that it is society and social arrangements that disable people with impairments, contemporary disability discourse emphasizes the social model of disability to counter medical and rehabilitative models of disability. However, the social model does not go far enough in addressing the issues of oppression and inclusion. The authors indicate that the social model does not specifically or adequately denote the oppression of persons with disabilities, which is a central component of progressive social work practice with people with disabilities. The social model of disability does not go far enough in deconstructing disability and offering social workers, as well as people with disabilities a way of moving forward in terms of practice anchored in individual, familial and societal change. The social model of disability is expanded by incorporating principles of anti-oppression social work practice. Although the contextual analysis of the social model of disability is an important component there remains a need for social workers to provide service to individuals and their families, which will be illustrated through anti-oppressive practice (AOP). By applying an anti-oppressive model of practice to the above definitions, the authors not only deconstruct disability paradigms but illustrate how AOP offers a framework for social workers to engage with people with disabilities at the individual, familial and community levels of practice, promoting an emancipatory focus in working with people with disabilities. An anti- social- oppression social work model of disability connects the day-to-day hardships of people with disabilities to the direct consequence of oppression in the form of ableism. AOP theory finds many of its basic concepts within social-oppression theory and the social model of disability. It is often the case that practitioners, including social workers and psychologists, define people with disabilities’ as having or being a problem with the focus placed upon adjustment and coping. A case example will be used to illustrate how an AOP paradigm offers social work a more comprehensive and critical analysis and practice model for social work practice with and for people with disabilities than the traditional medical model, rehabilitative and social model approaches.

Keywords: anti-oppressive practice, disability, people with disabilities, social model of disability

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Authors: Wendy Kramer

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How and when a donor-conceived person (DCP) learns about their conception significantly affects their experiences and choices, including whether they'd consider using a donor or donating their own gametes. Objective: We sought to identify factors that positively and negatively impact the experience of being a DCP. We sought to determine if DCP would consider utilizing donor gametes themselves, if unable to conceive spontaneously and if DCP were likely to be donors themselves. Materials and Methods: A cross-sectional survey of adult DCP was disseminated to members of the Donor Sibling Registry. The survey consisted of 31 items, including whether experience as DCP was positive or negative, the willingness to use donor gametes if spontaneous conception was not an option, and questions regarding donating gametes. Results: 529 people (81.7% female) completed the survey, the median age was 28 years (range 18-77 years), and 94.7% were conceived via donor sperm. Most felt "neutral" (31.6%), "positive" (26.3%) or "very positive" (20.8%) about being a DCP regardless of donor type. While most found out about being a DCP after age 18 (63.4%), those with a positive experience were more likely to "have always known" (40.7%). Conclusions: People conceived by donor-assisted reproduction are more likely to have neutral to overall positive feelings surrounding their conception if they are told at a very young age about their donor-conceived origins by a family member. The majority of DCPs are willing to adopt but would not consider using donated gametes themselves if unable to conceive spontaneously. DCPs are not likely to become donors themselves despite the majority of DCP having a high positive feeling regarding being donor-conceived.

Keywords: donor conception, sperm donation, oocyte donation, donor-conceived people, infertility

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Authors: Hamzeh Awad

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Disability is considered to be a worldwide complex phenomenon which rising at a phenomenal rate and caused by many different factors. Chronic diseases such as cardiovascular disease and diabetes can lead to mobility disability in particular and disability in general. The ICF is an integrative bio-psycho-social model of functioning and disability and considered by the World Health Organization (WHO) to be a reference for disability classification using its categories and core set to classify disorder’s functional limitations. Specialist programs at Sultan Bin Abdul Aziz Humanitarian City (SBAHC) are providing both inpatient and outpatient services have started to implement the ICF and use it as a problem solving tool in Rehab. Diabetes is leading contributing factor for disability and considered epidemic in several Gulf countries including the Kingdom of Saudi Arabia (KSA), where its prevalence continues to increase dramatically. Metabolic disorders, mainly diabetes are not well covered in Rehab field. The purpose of this study is present to research and clinical rehabilitation field of DREAM and ICF as a framework in clinical and research setting in Rehab service. Also, shed the light on using the ICF as problem solving tool at SBAHC. There are synergies between disability causes and wider public health priorities in relation to both chronic disease and disability prevention. Therefore, there is a need for strong advocacy and understanding of the role of ICF as a reference in Rehab settings in Middle East if we wish to seize the opportunity to reverse current trends of acquired disability in the region.

Keywords: international classification of functioning, disability and health (ICF), prototype, rehabilitation and diabetes

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