Search results for: disability studies

Authors: Leoni Van Der Merwe

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Historically, in South Africa, disability has been viewed as a dilemma of the individual. The discourse surrounding the definition of disability and applicable theories are as fluid as the differing needs of persons with disabilities within society. In 1997, the Office of the Deputy President published the White Paper on the Integrated National Disability Strategy (WPINDS) which sought to integrate disability issues in all governmental development strategies, planning and programs as well as to solidify the South African government’s stance that disability was to be considered according to the social model and not the, previously utilized, medical model of disability. The models of disability are conceptual frameworks for understanding disability and can provide some insight into why certain attitudes exist and how they are reinforced in society. Although the WPINDS was regarded as a critical milestone in the history of the disability rights struggle in South Africa; it has taken approximately twenty years for the publication of a similar document taking into account South Africa’s changing social, economic, political and technological dispensation. December 2015 marked the approval of the White Paper on the Rights of Persons with Disabilities (WPRPD) which seeks to update the WPINDS, integrate principles contained in international law instruments and endorse a mainstreaming trajectory for realizing the rights of persons with disabilities. While the WPINDS and the WPRPD were published two decades apart, both documents contain an emphasis on a transition from the medical model to the social model. Whereas, the medical model presupposes that disability is mainly a health and welfare matter and is focused on an individualistic and dependency-based approach; the social model requires a paradigm shift in the manner in which disability is constructed so as to highlight the shortcomings of society in respect of disability and to bring to the fore the capabilities of persons with disabilities. The social model has led to unmatched success in changing the perceptions surrounding disability. This article seeks to investigate the progress made in the implementation of the social model in South Africa by taking into account the effect of the diverse political and cultural landscape in promoting the historically entrenched medical model and the rise of disability activism prior to the new democratic dispensation as well as legislation, case law, policy documents and barriers in respect of persons with disabilities that are pervasive in South African society. The research paper will conclude that although numerous interventions have been identified and implemented to promote the consideration of disability within a social construct in South Africa, such interventions require increased national and international collaboration, resources and pace to ensure that the efforts made lead to sustainable results. For persons with disabilities, what remains to be seen is whether the proliferation of activism by interest groups, social awareness as well as the development of policy documents, legislation and case law will serve as the impetus to dissipate the view that disability is burden to be carried solely on the shoulders of the person with the disability.

Keywords: disability, medical model, social model, societal barriers, South Africa

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Authors: Humara Bano, Nyla Anjum

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Disability in any form has great impact not only for the person facing it but also for its family members too. This effect may be so severe that may lead to mal adjustment of any member of the family in society as well. This impact has also been multiplied due to negative attitudes of the society, unawareness about the needs of special needs and no legislation for the parents of children with special needs. As a result not only the separations among the parents have been reported but also the normal siblings in the home are also badly affected in their daily lives. The situation is more challenging when more than one child with disability is present in the family. The main objectives of this paper are to unfold the relationship of variety of disabilities (hearing, visual or physical impairment, mental retardation, speech impairment) in i) developing depression in home setting, ii) social exclusion, iii) anxiety and aggression and iv) development of insecure feelings among family members of the persons with disabilities, as well as, v) to identify coping strategies to manage the special needs by family members too. To reach on conclusion about fifty families (having any sort of disability in their homes) have been interviewed on basis of convenient sampling. Correlation, ANOVA and different analysis have been used to identify the relationship of disability in developing depression among family members in line of above mentioned problems. Results revealed that depression due to disability among families is a common phenomenon and adversely have affected their lives in daily routines as well as in following their life achievements. Coping with the situation and recommending various remedies by parents is the positive reflection of this study too that can help to families in managing their mental health.

Keywords: depression, anxiety and aggression, social exclusion, parents of children with special needs

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Authors: Haiu-Lan Chin, Yu-Fen Hsiao, Hua-Ying Chuang, Wei Lee

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An adult with intellectual disability generally has insufficient physical activity which is an important factor leading to premature weakness. Studies in recent years on frailty syndrome have accumulated substantial data about indicators of human aging, including unintentional weight loss, self-reported exhaustion, weakness, slow walking speed, and low physical activity. Of these indicators, hand-grip strength can be seen as a predictor of mortality, disability, complications, and increased length of hospital stay. Hand-grip strength in fact provides a comprehensive overview of one’s vitality. The research is about the investigation on hand-grip strength of adults with intellectual disabilities in facilities, institutions and workshops. The participants are 197 male adults (M=39.09±12.85 years old), and 114 female ones (M=35.80±8.2 years old) so far. The aim of the study is to figure out the performance of their hand-grip strength, and initiate the setting of training on hand-grip strength in their daily life which will decrease the weakening on their physical condition. Test items include weight, bone density, basal metabolic rate (BMR), static body balance except hand-grip strength. Hand-grip strength was measured by a hand dynamometer and classified as normal group ( ≧ 30 kg for male and ≧ 20 kg for female) and weak group ( < 30 kg for male, < 20 kg for female)The analysis includes descriptive statistics, and the indicators of grip strength fo the adults with intellectual disability. Though the research is still ongoing and the participants are increasing, the data indicates: (1) The correlation between hand-grip strength and degree of the intellectual disability (p ≦. 001), basal metabolic rate (p ≦ .001), and static body balance (p ≦ .01) as well. Nevertheless, there is no significant correlation between grip strength and basal metabolic rate which had been having significant correlation with hand-grip strength. (2) The difference between male and female subjects in hand-grip strength is significant, the hand-grip strength of male subjects (25.70±12.81 Kg) is much higher than female ones (16.30±8.89 Kg). Compared to the female counterparts, male participants indicate greater individual differences. And the proportion of weakness between male and female subjects is also different. (3) The regression indicates the main factors related to grip strength performance include degree of the intellectual disability, height, static body balance, training and weight sequentially. (4) There is significant difference on both hand-grip and static body balance between participants in facilities and workshops. The study supports the truth about the sex and gender differences in health. Nevertheless, the average hand-grip strength of left hand is higher than right hand in both male and female subjects. Moreover, 71.3% of male subjects and 64.2% of female subjects have better performance in their left hand-grip which is distinctive features especially in low degree of the intellectual disability.

Keywords: adult with intellectual disability, frailty syndrome, grip strength, physical condition

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Authors: Kaycee L. Bills

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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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Authors: Hui-Chi Huang, Su-Ju Yang, Ching-Wei Lin, Jui-Yao Tsai, Liang-Yiang

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Background: Evidence exists that pneumonia is a frequently encountered complication after stroke which is associated with a higher rate of mortality and increased long-term disability Purpose: To determine the predictors associated with the risk of one-year disability in acute stroke. Methods: Data for this longitudinal follow-up study were extracted from a tertiary referral medical center’s stroke registry database in Northern Taipei. Eligible patients with acute stroke admitted to the hospital and completed a one-year follow up were recruited for analysis. Favorable outcome was defined as a modified Rankin Scale score ≤ 2. SAS version 9.2 was used for the multivariable regression analyses to examine the factors correlated with the one-year disability in stroke patients. Results: From January 2012 to December 2013, a total of 1373 (mean age: 70.49±15.4 years, 913(66.5%) males) consecutively administered acute stroke patients were recruited. Overall, the rate of one-year disability was 37.20%(404/1086) in those without post-stroke pneumonia. It increased to 82.93 %(238/287) in patients developed post-stroke pneumonia. Factors associated with increased risk of disability were age ≧ 75(OR= 4.845, p<.0001), female /gender (OR=1.568, p =.0062), previous stroke (OR= 1.868, p = <. 0001) ,dementia (OR= 2.872, p =.0047), ventilator use (OR= 4.653, p <. 0001),age ≧ 75 /pneumonia (OR=1.236, p <. 0001) , ICU admission (OR=3.314, p <.0001) , nasogastric tube insertion (OR= 4.28, p <.0001), speech therapy (OR= 1.79, p =.0142), urinary tract infection (OR= 1.865, p =.0018), estimated glomerular filtration rate (eGFR > 60 )(OR= 0.525, p= .0029), Admission NIHSS >11 (OR= 2.101, p = .0099), Length of hospitalization > 30(d) (OR= 5.182, p <.0001). Conclusion: Older age, severe neurological deficit, complications, rehabilitation intervention, length of hospitalization >30(d), and cognitive impairment were significantly associated with Post-stroke functional impairment, especially those with post-stroke pneumonia. These findings could open new avenues in the management of stroke patients.

Keywords: stroke, risk, pneumonia, disability

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Authors: Lidon Lashley

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This paper presents how the social model of disability can be used to reshape inclusive education practices in Guyana. Inclusive education in Guyana is metamorphosizing but still firmly held in the tenets of the Medical Model of Disability which influences the experiences of children with Special Education Needs and/or Disabilities (SEN/D). An ethnographic approach to data gathering was employed in this study. Qualitative data was gathered from the voices of children with and without SEN/D as well as their mainstream teachers to present the interplay of discourses and subjectivities in the situation. The data was analyzed using Adele Clarke's postmodern approach to grounded theory analysis called situational analysis. The data suggest that it is possible but will be challenging to fully contextualize and adopt Loreman's synthesis and Booths and Ainscow's Index in the two mainstream schools studied. In addition, the data paved the way for the presentation of the social model framework specific to Guyana called 'Southern Inclusive Education Framework for Guyana' and its support tool called 'The Inclusive Checker created for Southern mainstream primary classrooms.

Keywords: social model of disability, medical model of disability, subjectivities, metamorphosis, special education needs, postcolonial Guyana, inclusion, culture, mainstream primary schools, Loreman's synthesis, Booths and Ainscow's index

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Authors: Zakaria Elkhwesky, Islam E. Salem, Mona Barakat

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The purpose of this study is to analyze the importance of disability management practices (DMPs) and the level of implementation from viewpoints of food and beverage (F & B) managers, F and B entry-level employees, working in F & B departments, and human resources (HRs) managers in five-star hotels in Egypt. It also examined the moderating effect of team orientation (TO) between the importance and the implementation. Data were collected from 400 participants. The correlation proved to be significant, moderate, and positive between the importance and the implementation of DMPs. More, the findings revealed that the relationship between the importance and the implementation is significantly more positive under the condition of a high encouragement of TO.

Keywords: disability management practices, diversity management, team orientation, HR management, hospitality, and tourism operations

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Authors: Ravan Samadov

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Mentally disabled people are the most discriminated against among other disabled people and face much stronger negative attitudes across many cultures. The most complex and severe form of exclusion of these people is deprivation of liberty on the grounds of their disability. This problem was for many years overlooked to a great extent by the core human rights instruments. However, the United Nations (UN) Convention on the Rights of Persons with Disabilities (CRPD), adopted in 2006, is considered a potential tool to successfully fill the gap. It is especially vital for the developing countries with the vast majority of disabled people of the world and the CRPD is presumed to be able to trigger drastic positive changes. Article 14 of the mentioned human rights treaty has brought into the international forum a new notion, as prohibits deprivation of liberty on the grounds of disability. It is to be understood as an absolute prohibition of deprivation of liberty on the grounds of disability, including mental disability, which manifests in the form of non-consensual psychiatric hospitalisation. The interpretation by the CRPD Committee indicates that this prohibition well embraces all types of non-consensual psychiatric hospitalisation – whether it is based on illness, impairment or disability. This prohibition also extends to such justifications as ‘dangerousness’, ‘need for treatment’ and ‘diminished capacity’. Moreover, providing due substantive and/or procedural safeguards does not render any legitimacy to application of deprivation of liberty on the grounds of mental disability. Logically, this new prohibition form was to be duly considered by different UN human rights bodies, and was subsequently to bring changes to their practices. However, the analyses of post-CRPD work of those bodies allows for asserting the contrary, as they have continued displaying the position which recognises deprivation of liberty on the grounds of disability to be legitimate. While such a position could be justified in the pre-CRPD time as stemming from the silence of human rights documents about it, the continuation of this course after the CRPD entered into force may call the integrity and coherence of the UN human rights treaty system into question. The non-coherent approaches of different UN bodies to this novelty give grounds for misinterpretation thereof, and hinder its due implementation by the States Parties. The paper will discuss the nature of the mentioned new prohibition and the controversial approaches to that notion by different UN human rights bodies.

Keywords: CRPD, deprivation of liberty, mental disability, non-consensual psychiatric hospitalisation, UN bodies

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Authors: L. Koštić, P. Karaman

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Society has a lot of diversities according to sex, age, religion, abilities or disabilities, education, etc. According to differences, everybody needs to be tolerated and equally included in society. In order to provide quality inclusion, society needs to tolerate differences. This study relates to the differences in disability. To examine tolerance towards disability and inclusion, this study was conducted with students attending regular elementary and high school. The main goal was to examine their attitudes towards their classmates and elderly people with disabilities. The study begins with the hypothesis that the environment has a highly developed tolerance towards people with disabilities, regardless of age. The sample was divided according to tasks and methodology analysis. Students attending regular elementary school were asked to make drawings of their classmates with disabilities. The drawings were analyzed using quantitative methodology according to the colors children used and the position of character on the paper. Students attending high school and members of general population were asked to complete a questionnaire designed for this study during a workshop held on the International Day for Tolerance. Responses were analyzed using qualitative methodology. The hypothesis was confirmed.

Keywords: classmates, disability, students, tolerance

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Authors: Esra Ince

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As an important means of cultural transmission, cinema is an important resource for seeing cultural and social definitions, meanings and descriptions of people with disabilities. This study is aimed to reveal how disabled people are represented in the films selected from Turkish cinema. For this purpose, the films were examined with qualitative content analysis. The Goffmanian perspective was adopted in the study. The relationship between disability and stigma has been tried to be explained. How the disabled, which Goffman defines as a stigmatized group due to their differences, are represented in the cinema has been examined within the dramaturgy model. In the research, it was seen that the disabled characters took place in similar representations in different regions of dramaturgy. It has been seen that the films reinforce the negative discourse and behaviors by reflecting the prejudices, attitudes and behaviors in the society and continue to stigmatize disability.

Keywords: disability, Turkish cinema, Goffman, stigma

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Authors: Mavis Yaa Konadu Agyemang

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Despite provisions to uphold and safeguard the rights of persons with disability in Ghana, there is evidence that they still encounter several challenges which limit their full and effective involvement in mainstream society, including the gold mining sector. The study sought to explore how persons with physical disability (PWPDs) experience gold mining in the Obuasi Municipal Area. A qualitative research design was used to discover and understand the experiences of PWPDs regarding mining. The purposive sampling technique was used to select five key informants for the study with the age range of (24-52 years) while snowball sampling aided the selection of 16 persons with various forms of physical disability with the age range of (24-60 years). In-depth interviews were used to gather data. The interviews lasted from forty-five minutes to an hour. In relation to the setting, the interviews of thirteen (13) of the participants with disability were done in their houses, two (2) were done on the phone, and one (1) was done in the office. Whereas the interviews of the five (5) key informants were all done in their offices. Data were analyzed using Creswell’s (2009) concept of thematic analysis. The findings suggest that even though land degradation affected everyone in the area, persons with mobility and visual impairment experienced many difficulties trekking the undulating land for long distances in search of arable land. Also, although mining activities are mostly labour-intensive, PWPDs were not employed even in areas where they could work. Further, the cost of items, in general, was high, affecting PWPDs more due to their economic immobility and paying for other sources of water due to land degradation and water pollution. The study also discovered that the peculiar conditions of PWPDs were not factored into compensation payments, and neither were females with physical disability engaged in compensation negotiations. Also, although some of the infrastructure provided by the gold mining companies in the area was physically accessible to some extent, it was not accessible in terms of information delivery. There is a need to educate the public on the effects of mining on PWPDs, their needs as well as disability issues in general. The Minerals and Mining Act (703) should be amended to include provisions that would consider the peculiar needs of PWPDs in compensation payment.

Keywords: mining, resettlement, compensation, environmental, social, disability

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Authors: Afeez Kolawole Shittu

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Democracy as practiced across the globe is sustained with the increase participation of all eligible voters irrespective of class, race, colour, and disabilities. However, there is a perception within the contemporary African society that people with disability (PWDs) belongs to charity and welfare. This is exacerbated with little understanding among African counties including Nigeria that persons with disability have fundamental rights inevitably rooted in the constitution. This significant viewpoint has continued to militate against the social inclusion of persons with disabilities in various aspects of societal lives including their political participation It is instructive to note that the political right of PWDs has been protected by various international conventions. Article 29 of the United Nations Convention on the Rights and Dignities for Persons with Disability (CRPD) guaranteed the participation of persons with disability in the political process. Domesticating and ratification of this right has been a challenge for many African countries including Nigeria. Against the backdrop, the Independent National Electoral Commission (INEC), the body saddled with the responsibility of conducting elections in Nigeria provided forum for the participation of persons with disability in election through implementations of electoral act. Section 56 (1) and (2) of the 2010 Electoral Act (as amended) provide for voting participation of persons with disability. This study examines the implementation of the electoral act and how it impacts the voting participation of persons with disability vis-à-vis other challenges affecting the participation of PWDs in electoral process in Nigeria’s 2019 general election. This paper draws on mixed method in sourcing relevant information from the respondents. Interview will be conducted among INEC officials, Civil Society Organisations, Joint National Association of Persons with Disability (JONAPWD). Questionnaire and Focus Group Discussion will be held among different forms of PWDs. The data will be analysed using appropriate descriptive statistics and inferential statistics, as well as thematic content analysis. The study will enlighten understanding on the awareness of the political rights of PWDs as well as improving their electoral participation for sustainable democracy in Nigeria, Africa’s most populous country.

Keywords: electoral reforms, voting participation, persons with disabilities

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Authors: Mafunda Esther

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The paper seeks to find out and document the impact of culture and religion on disability, specifically language impairment and health care seeking practices of the Shona people. Its main objectives are to explore the cultural and religious beliefs that affect the utilization of rehabilitation services in a rural community in Zimbabwe. The other objective of the paper is to describe how language impairment is presented and understood by people living in a Zimbabwean rural area. The research is qualitative interpretive phenomenological research, and it utilizes the case study approach using semi structured interviews and focus group discussions. Results from the research established that religious and cultural beliefs determine how the Shona people view disability, and this guides their health care seeking practices. The research is important since communication disorders occur in populations worldwide though they are not always recognized as such. The lack of recognition of and the attitudes toward speech and languages disorders, as well as the beliefs about the causes of such disorders, affect people's attitudes toward the treatment of the disorders.

Keywords: culture, religion, disability, language impairment

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Authors: Alapa Peters Odugbo

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The remarkable but fascinatingly intricate book 'The Lives of Jessie Sampter', by Sarah Imhoff, which describes Jessie Sampter's three different lives as a queer, a disabled person, and a Zionist, served as the main inspiration for this work. Her second chapter of Imhoff, which covers disability in-depth, inspired the focus of my study. This paper critically explores how culture, religion, and medicine contribute to and sustain discriminatory practices against people with disabilities in Nigeria. These practices include continued and often unchallenged stigmatization, unequal treatment, and denial of basic social services, employment prospects, and fundamental human rights. The paper makes crucial recommendations to help combat and eliminate these practices and negative perceptions toward people with disabilities in Nigeria, as well as to safeguard and promote their interests and rights.

Keywords: disability, culture, religion, medicine

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Authors: Grzegorz Kubinski

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The proposed paper is focused on forms of identity expression in people with disabilities (PWD) in the social networks like Instagram. Theoretical analysis widely proposes using the new media as an assistive tool for improving wellbeing and labour activities of PWD. This kind of use is definitely important and plays a key role in all social inclusion processes. However, Instagram is not a place where PWD only express their own problems, but in the opposite, allows them to construct a new definition of disability. In the paper, the problem how this different than a classical approach to disability is created by PWD will be discussed. This issue will be scrutinized mainly in two points. Firstly, the question of how disability is changed by other everyday activities, like fashion or sport, will be described. Secondly, and this could be seen as more important, the point how PWD redefining their bodies creating a different form of aesthetic will be presented. The paper is based on content analysis of Instagram accounts. About 20 accounts created by PWD were analyzed for 6 month period, taking into account elements like photos, comments and discussions. All those information were studied in relation to 'everyday life' category and 'aesthetic' category. Works by T. Siebers, L. J. Davis or R. McRuer were used as theoretical background. Conclusions and interpretations presented in the proposed paper show that the Internet can be used by PWD not only as prosthetic and assistive tools. PWD willingly use them as modes of expression their independence, agency and identity. The paper proposes that in further research this way of using the Internet communication by PWD should be taken into account as an important part of the understanding of disability.

Keywords: body, disability, identity, new media

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Authors: Shakhawath Hossain, Tazkia Tahsin

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Introduction/Background: Intellectual disability is a disability characterized by significant limitations both in intellectual functioning and in adaptive behavior, which covers many everyday social and practical skills. Vocational education is a multi-professional approach that is provided to individuals of working age with health-related impairments, limitations, or restrictions with work functioning and whose primary aim is to optimize work participation. Instrumental Activities of Daily Living activities to support daily life within the home and community. Like as community mobility, financial management, meal preparation, and clean-up, shopping. Material and Method: Electronic searches of Medline, PubMed, Google scholar, OT Seeker literature using the key terms of intellectual disability, vocational rehabilitation, instrumental activities of daily living and Occupational Therapy, as well as a thorough manual search for relevant literature. Results: There were 13 articles, all qualitative and quantitative, which are included in this review. All studies were mixed methods in design. To take the Occupational Therapy services, there is a significant improvement in their children's various areas like as sensory issues, cognitive abilities, perceptual skills, visual, motor planning, and group therapy. After taking the vocational and instrumental activities of daily living training children with intellectual disabilities to participate in their daily activities and work as an employee different company or organizations. Conclusion: The persons with intellectual disability are an integral part of our society who deserves social support and opportunities like other human beings. From the result section of the project papers, it is found that the significant benefits of Occupational Therapy services in the aspects of vocational and instrumental activities of daily living.

Keywords: occupational therapy, daily living activities, intellectual disabilities, instrumental ADL

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Authors: Sidra Jawed

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The accessibility constructs and the body privilege discourse has been a major problem while dealing with health inequities and inaccessibility. The inherent problem in this arbitrary view of disability is that disability would never be the productive way of living. For past thirty years, disability activists have been working to differentiate ‘impairment’ from ‘disability’ and probing for more understanding of limitation imposed by society, this notion is ultimately known as the Social Model of Disability. The vulnerable population as disability community remains marginalized and seen relentlessly fighting to highlight the importance of social factors. It does not only constitute physical architectural barriers and famous blue symbol of access to the healthcare but also invisible, intangible barriers as attitudes and behaviours. Conventionally the idea of ‘disability’ has been laden with prejudiced perception amalgamating with biased attitude. Equity in contemporary setup necessitates the restructuring of organizational structure. Apparently simple, the complex interplay of disability and contemporary healthcare set up often ends up at negotiating vital components of basic healthcare needs. The role of society is indispensable when it comes to people with disability (PWD), everything from the access to healthcare to timely interventions are strongly related to the set up in place and the attitude of healthcare providers. It is vital to understand the association between assumptions and the quality of healthcare PWD receives in our global healthcare setup. Most of time the crucial physician-patient relationship with PWD is governed by the negative assumptions of the physicians. The multifaceted, troubled patient-physicians’ relationship has been neglected in past. To compound it, insufficient work has been done to explore physicians’ perspective about the disability and access to healthcare PWD have currently. This research project is directed towards physicians’ perspective on the intersection of health and access of healthcare for PWD. The principal aim of the study is to explore the perception of disability in family medicine physicians, highlighting the underpinning of medical perspective in healthcare institution. In the quest of removing barriers, the first step must be to identify the barriers and formulate a plan for future policies, involving all the stakeholders. There would be semi-structured interviews to explore themes as accessibility, medical training, construct of social model and medical model of disability, time limitations, financial constraints. The main research interest is to identify the obstacles to inclusion and marginalization continuing from the basic living necessities to wide health inequity in present society. Physicians point of view is largely missing from the research landscape and the current forum of knowledge with regards to physicians’ standpoint. This research will provide policy makers with a starting point and comprehensive background knowledge that can be a stepping stone for future researches and furthering the knowledge translation process to strengthen healthcare. Additionally, it would facilitate the process of knowledge translation between the much needed medical and disability community.

Keywords: disability, physicians, social model, accessibility

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Authors: Asma Batool

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Immigrant families raising a child with developmental disabilities in Canada encounter many challenges during the process of disability care. Starting from the early screening of their child for diagnosis followed by challenges associated with treatment, access and service utilization. A substantial amount of research focuses on identifying barriers. However, the functional aspects of barriers in terms of their potential influences on parents and children with disabilities are unexplored yet. This paper presents functional analysis of barriers in disability care research by adopting a method of integrated approach. Juxtaposition of two developmental approaches, Bronfenbrenner’s ecological model and parents ‘transformational process model is generating multiple hypotheses to be considered while empirically investigating causal relationships and mediating or moderating factors among various variables related with disability care research. This functional analysis suggests that barriers have negative impacts on the physical and emotional development of children with disabilities as well as on the overall quality of family life (QOFL). While, barriers have facilitating impacts on parents, alternatively, the process of transformation in parents expedite after experiencing barriers. Consequently, parents reconstruct their philosophy of life and experience irreversible but continuous developmental change in terms of transformations simultaneously with their developing child and may buffer the expected negative impacts of barriers on disabled child and QOFL. Overall, this paper is suggesting implications for future research and parents’ transformations are suggesting potential pathways to minimize the negative influences of barriers that parents experience during disability care, hence improving satisfaction in QOFL in general.

Keywords: barriers in disability care, developmental disabilities, parents’ transformations, quality of family life

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Authors: Daniel Suárez, Jesús Tomas, Sandra Sendra, Sandra Viciano-Tudela, Luis Felipe Calle, Javier Urios, Jaime Lloret

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Our study is to develop a tool for the mobile phone to an assessment of body damage or determination of the degree of disability. This is a field of action of legal medicine and insurance with obvious economic implications. Those people who have suffered an accident or bodily harm demand a quantification of it. The assessment of bodily harm or disability by the expert medical professional is not exempt from complexity. Sometimes it is difficult to quantify pain; other times, the doctor faces simulators or exaggerators, and on many occasions, it is difficult to remember the extensive tables of scales whose details are complex to remember and apply. We present a tool, as a mobile application, that allows entering the sociodemographic date of the patient as well as the characteristics of the accident suffered by the person. With these preliminary data and introducing bodily damage, an approximate calculation of the compensation that the injured party should receive can be made. One of the results of this study is that it allows calculating joint mobility angles without the need to use a goniometer.

Keywords: mobile tool, body damage, personal injury and disability, telemedicine

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Authors: Angelika Magiera, Weronika Penar, Czesław Klocek

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Intellectual disability (ID) affects approximately 1.55% of children and adults in the society of developed countries. Depending on the ID degree, the patient is burdened with additional disease entities. Intellectual disability does not only limits a person’s opportunities to participate in social life but also affects whole families. People with ID belong to the group of risk of mental illnesses, they are less emotionally stable, while families are predisposed to depression. The study was held in a day care center for people with intellectual disabilities (of various degrees of disability) on 26 people. Nurses and carers also took part. The age range of study groups ranged from 22 to 67 years. Therapeutic classes were held for four independent mixed groups (sex and intellectual disability degree) from 6 to 7 people each, lasting no more than 30 minutes. They were created by the facility's staff to make sure that a group is stable. The animal assisted activity took place with a 2.5-year-old Ragdoll cat. The animal has passed the exam (certificate entitling her to take part in felinotherapy) and had 1.5 years of work experience. Due to the different degrees of ID, an individual emotional state survey was conducted among the caregivers of those who were involved in the activity, to assess the impact of animal assisted activity with a cat on patients. A positive effect on the emotional state of people with different types of intellectual disability was observed. Caregivers and nurses of those participating in the study express willingness to continue these types of classes and consider them necessary for this group of people.

Keywords: intellectual disabilities, animal-assisted activity, cat, feline, emotions

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Authors: Kirsty Liddiard

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In this paper, we detail the politics and practicalities of co-produced disability research with disabled young people with life-limiting and life-threatening impairments in our ESRC funded project, Life, Death, Disability and the Human: Living Life to the Fullest. We centre our Co-Researcher Collective of disabled young people who, through virtual research methods and social technologies, are co-leading this innovative project exploring the lives, hopes, desires and ambitions of young disabled people living short(er) lives. Co-production is an established approach; however, our co-researchers have led us to develop inclusive and transformative research practices that engage with online social research methods in innovative ways. Through this discussion, we demarcate the Academy and ‘research process’ as potentially deeply ableist spaces that propogate the normative researcher as non-disabled; someone integrated into the Academy and insecure employment; and who enacts normative modes of leadership. We use our experiences of co-production in Living Life to the Fullest, then, to show that research – as a discipline, a set of politics, and scholarly practice – must be transformed in order to enable new inclusive research futures that support meaningful co-production with marginalised young people. In conclusion, as we detail our experiences, we aim to encourage disability studies researchers and others to adopt virtual environments and social technologies when researching with and for the lives of disabled people.

Keywords: co-production, illness, youth, technology

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Authors: Sera Ratu, Jane Chivers, Jessica Botfield

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Objectives: The Reproductive and Family Health Association of Fiji (RFHAF) and Family Planning Australia are working together to introduce quality comprehensive sexuality education into Special Schools - which are schools for students with disability. Sexual and reproductive health information is needed by students with disability attending Special Schools. Children with special needs go through the same changes as able-bodied children. The Fiji Disability Inclusion project is a three-year project that started in 2015. One of its objectives is to increase exposure to comprehensive sexuality education for primary and secondary school students with disability. Method: A baseline survey was undertaken with 72 students with disability; it included questions about puberty, sexual health, and relationships. 34 teachers also completed a survey about their views of sexuality education and confidence in delivering it. Consent was facilitated by running information sessions with teachers and parents. The process of gaining consent and completing the surveys was designed to be accessible to students with disability. Given the sensitive nature of reproductive and sexual health, and the potential vulnerability of young people with disability, ethical considerations were important in the design and implementation of the surveys, and ethics approval was obtained. Results: Findings from the surveys suggest that students have mixed knowledge and awareness of sexual health issues. Most teachers reported a need for their students to learn about sexuality and relationships. A positive outcome of conducting the surveys was that RFHAF staff reported they have developed skills and confidence in communicating with young people with a range of disabilities. They have a greater understanding of what students want to learn, and what teachers feel is important. Conclusions: These survey findings will assist RFHAF in developing comprehensive sexuality education programs that are relevant and accessible to students in Special Schools, and to develop an appropriate professional development program for teachers. Findings may also be applicable to other Special Schools when developing sexuality education programs. The education programs developed for students as part of this project, and the professional development programs for teachers, may be relevant to other countries.

Keywords: comprehensive sexuality education, delivery, sexual and reproductive health and rights, special schools

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Authors: Aisling De Paor

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Scientific and technological developments are driving genetics and genetic technologies into the public sphere. Scientists are making genetic discoveries as to the make up of the human body and the cause and effect of disease, diversity and disability amongst individuals. Technological innovation in the field of genetics is also advancing, with the development of genetic testing, and other emerging genetic technologies, including gene editing (which offers the potential for genetic modification). In addition to the benefits for medicine, health care and humanity, these genetic advances raise a range of ethical, legal and societal concerns. From an ethical perspective, such advances may, for example, change the concept of humans and what it means to be human. Science may take over in conceptualising human beings, which may push the boundaries of existing human rights. New genetic technologies, particularly gene editing techniques create the potential to stigmatise disability, by highlighting disability or genetic difference as something that should be eliminated or anticipated. From a disability perspective, use (and misuse) of genetic technologies raise concerns about discrimination and violations to the dignity and integrity of the individual. With an acknowledgement of the likely future orientation of genetic science, and in consideration of the intersection of genetics and disability, this paper highlights the main concerns raised as genetic science and technology advances (particularly with gene editing developments), and the consequences for disability and human rights. Through the use of traditional doctrinal legal methodologies, it investigates the use (and potential misuse) of gene editing as creating the potential for a unique form of discrimination and stigmatization to develop, as well as a potential gateway to a form of new, subtle eugenics. This article highlights the need to maintain caution as to the use, application and the consequences of genetic technologies. With a focus on the law and policy position in Europe, it examines the need to control and regulate these new technologies, particularly gene editing. In addition to considering the need for regulation, this paper highlights non-normative approaches to address this area, including awareness raising and education, public discussion and engagement with key stakeholders in the field and the development of a multifaceted genetics advisory network.

Keywords: disability, gene-editing, genetics, law, regulation

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Authors: Mafalda Moreira, Diana Alba, Inês Paiva Ferreira, Rita Calejo, Ana Rita Soares, Leonilde Machado

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Intellectual disability (ID) is characterized by deficits in intellectualfunctioningassociatedwithalterations in the adaptive behaviour, whose onset is inthedevelopmentalperiod. Itaffects 3% of the population, ofwhich 10% have a geneticaetiology. One of those causes isAlwadeiSyndrome, with 3 cases describedworldwide. It results from a homozygous nonsense mutation in theRUSC2 gene andisassociatedwithintellectualdisabilityanddysmorphic facialfeatures. Theauthorsreportthe case of a 5-year-old-boy, born to a healthymotherafter a full-termuneventfulpregnancy, thatwasreferred to Neurodevelopmentalconsultationdue toglobal developmentaldelay. Familyhistoryrevealedlearningdifficulties in the paternal brotherhood. Milddismorphicfeatureswereevidentsuch as darkinfraorbitalregion, low-set ears, beakednose, retrognathism, high-archedpalateandjointhyperlaxity. WechslerIntelligenceScale for Children III fullscaleIQ quoted 61. Karyotypeandchromosomalmicroarrayanalysiswerenormal, as well as the fragile X molecular study. DNA sequencingwasthenperformedandallowedtheidentificationof amutation in the RUSC2 gene. Theetiologicaldiagnosisof ID remains unknown in up to 80% of cases, creatinguncertainty in children’sfamilies. Theadvances in DNA sequencingtechnologieshaveincreasedourknowledgeofthegeneticdiseasesinvolved, as theAlwadeisyndromewasonlydescribedsince 2016. Thegeneticdiagnosisof ID allowsfamilygeneticcounselingandenablesthedevelopmentof target therapeutic approaches.

Keywords: intellectual disability, genetic aetiology, alwadei syndrome, RUSC2

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Authors: Bilge B. Calik, Ummuhan B. Aslan, Suat Erel, Sehmus Aslan

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Objective: Intellectual disability (ID) is characterized by limitations in both intellectual functioning and adaptive behavior, which covers many everyday social and practical skills. The aim of this study was to evaluate the balance and coordination performance determined between mild and moderate ID adolescents who regularly play sport. Methods: The study comprised a total of 179 participants, of which 135 were male adolescents with mild and moderate-level ID who regularly play sports (16.52 ± 2.17 years) and 44 age-matched male adolescents with typical development without ID who do not do any sports (16.52 ± 0.99 years). The participants with ID were students of Special Education Schools for the mentally disabled and had been diagnosed with ID at a Ministry of Health Hospital. The adolescents with mild and moderate ID had been playing football in their school teams at least 2 days a week, for at least one year. Balance and coordination of adolescents were assessed by Bilateral coordination and balance subtests of Short Form Bruininks-Oseretsky Test of Motor Proficiency (BOT-2 SF). Results: As a result of the evaluations comparing coordination and balance scores significant differences were determined between all three groups in favor of the peers without ID (p<0.05). Conclusions: It was observed that balance and coordination levels of adolescents with mild ID were better than those of adolescents with moderate-level ID but lower than those of peers without ID. These results indicate a relationship between IQ level and motor performance. Further comparative studies are needed on individuals with ID who play and do not play sports in order to examine the impact of participation in sports on the motor skills of individuals with ID.

Keywords: balance, coordination, intellectual disability, motor skills, sport

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Authors: P. Maheshwari, M. Brindavan

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The present research aimed to study the level of socio-emotional skills and perceived self-efficacy of children with learning disability. The study further investigated the relationship between the levels of socio-emotional skills, perceived self-efficacy and academic achievement of children with learning disability. The sample comprised of 40 children with learning disability as their primary condition, belonging to middle or upper middle class, living with both the parents, residing in Mumbai. Purposive or Judgmental and snowball sampling technique was used to select the sample for the study. Proformas in the form of questionnaires were used to obtain the background information of the children with learning disability. A self-constructed Child’s Perceived Self-Efficacy Assessment Scale and Child’s Social and Emotional Skills Assessment Scale was used to measure the level of child’s perceived self-efficacy and their level of social and emotional skill respectively. Academic scores of the child were collected from the child’s parents or teachers and were converted into a percentage. The data was analyzed quantitatively using SPSS. Spearman rho or Pearson Product Moment correlation was used to ascertain the multiple relationships between child’s perceived self-efficacy, child’s social and emotional skills and child’s academic achievement. The findings revealed majority (27) of the children with learning disability perceived themselves having above average level of social and emotional skills while 13 out of 40 perceived their level of social and emotional skills at an average level. Domain wise analyses revealed that, in the domain of self- management (26) and relationship skills (22) more number of the children perceived themselves as having average or below average level of social and emotional skills indicating that they perceived themselves as having average or below average skills in regulating their emotions, thoughts, and behaviors effectively in different situations, establishing and maintaining healthy and rewarding relationships with diverse groups and individuals. With regard to perceived self-efficacy, the majority of the children with learning disability perceived themselves as having above average level of self-efficacy. Looking at the data domain wise it was found that, in the domains of self-regulated learning and emotional self-efficacy, 50% of the children perceived themselves at average or below average level, indicating that they perceived themselves as average on competencies like organizing academic activities, structuring environment to make it conducive for learning, expressing emotions in a socially acceptable manner. Further, the correlations were computed, and significant positive correlations were found between children’s social and emotional skills and academic achievement (r=.378, p < .01), and between children’s social and emotional skills and child’s perceived self-efficacy (r = .724, p < .01) and a positive significant correlation was also found between children’s perceived self-efficacy and academic achievement (r=.332, p < .05). Results of the study emphasize on planning intervention for children with learning disability focusing on improving self-management and relationship skills, self-regulated learning and emotional self-efficacy.

Keywords: learning disability, social and emotional skills, perceived self-efficacy, academic achievement

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Authors: Sankalpa Satapathy

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The stigma attached to disability is very high in India and given its patriarchal society women and their interests have always been pushed to the background. The identity of disabled women is compromised under the social construction of disability which lowers their self-esteem and hampers their development. Disability policies in India have focused on provision of educational and employment opportunities to make them economically productive members of the society. This preoccupation with the materialistic spheres of lives of the disabled has led to a neglect of the private sphere concerning intimate social relationships and motherhood. This paper seeks to bring to forefront the private lives of disabled women. Semi-structured in-depth interviews were conducted with twenty seven women with physical disability (congenital/acquired) from Odisha, a state in India. Sampling was done in a manner to include women from various strata of the society to allow meaningful analysis. In a society where paramount importance is attached to wifehood and motherhood, the chances of marriage for disabled women were very low compared to disabled men. Majority believed that marriage and having a family was meant for non disabled women and had decided against getting married. Socialization process was found to be a major factor in determining the ideas and aspirations of disabled women. They were clearly sidelined by their families on the issue of marriage. Education and employment levels did not seem to increase the appeal of disabled women to prospective suitors. But not all the women interviewed were closed to the idea of intimate relationships and marriage. Disabled women who were married or hoped to get married in future were found to have a better body image and greater self motivation. It is interesting to understand the means by which these women, who have been brought up to internalize ideas of their unattractiveness, undesirability, asexuality and inability to care, established identities which have so long been denied to them. With these stories of personal triumphs an attempt is made for reclamation of private spheres which have been abandoned by disability policies and make them gender sensitive.

Keywords: disability, gender, marriage, relationships

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Authors: Yesim Sucullu Karadag, Pinar Kurt, Sule Bilen, Nese Subutay Oztekin, Fikri Ak

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Background: Primary cervical dystonia is thought to be a purely motor disorder. But recent studies revealed that patients with dystonia had additional non-motor features. Sensory and psychiatric disturbances could be included into the non-motor spectrum of dystonia. The Basal Ganglia receive inputs from all cortical areas and throughout the thalamus project to several cortical areas, thus participating to circuits that have been linked to motor as well as sensory, emotional and cognitive functions. However, there are limited studies indicating cognitive impairment in patients with cervical dystonia. More evidence is required regarding neurocognitive functioning in these patients. Objective: This study is aimed to investigate neurocognitive profile of cervical dystonia patients in comparison to healthy controls (HC) by employing a detailed set of neuropsychological tests in addition to self-reported instruments. Methods: Totally 29 (M/F: 7/22) cervical dystonia patients and 30 HC (M/F: 10/20) were included into the study. Exclusion criteria were depression and not given informed consent. Standard demographic, educational data and clinical reports (disease duration, disability index) were recorded for all patients. After a careful neurological evaluation, all subjects were given a comprehensive battery of neuropsychological tests: Self report of neuropsychological condition (by visual analogue scale-VAS, 0-100), RAVLT, STROOP, PASAT, TMT, SDMT, JLOT, DST, COWAT, ACTT, and FST. Patients and HC were compared regarding demographic, clinical features and neurocognitive tests. Also correlation between disease duration, disability index and self report -VAS were assessed. Results: There was no difference between patients and HCs regarding socio-demographic variables such as age, gender and years of education (p levels were 0.36, 0.436, 0.869; respectively). All of the patients were assessed at the peak of botulinum toxine effect and they were not taking an anticholinergic agent or benzodiazepine. Dystonia patients had significantly impaired verbal learning and memory (RAVLT, p<0.001), divided attention and working memory (ACTT, p<0.001), attention speed (TMT-A and B, p=0.008, 0.050), executive functions (PASAT, p<0.001; SDMT, p= 0.001; FST, p<0.001), verbal attention (DST, p=0.001), verbal fluency (COWAT, p<0.001), visio-spatial processing (JLOT, p<0.001) in comparison to healthy controls. But focused attention (STROOP-spontaneous correction) was not different between two groups (p>0.05). No relationship was found regarding disease duration and disability index with any neurocognitive tests. Conclusions: Our study showed that neurocognitive functions of dystonia patients were worse than control group with the similar age, sex, and education independently clinical expression like disease duration and disability index. This situation may be the result of possible cortical and subcortical changes in dystonia patients. Advanced neuroimaging techniques might be helpful to explain these changes in cervical dystonia patients.

Keywords: cervical dystonia, neurocognitive impairment, neuropsychological test, dystonia disability index

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Authors: Johanna Sagner, María José Sandoval

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At the early stages of adolescence, young people, regardless of a disability or not, start to establish closer friendship ties. Unlike previous developmental phases, these ties are rather reciprocal, more committed, and require more time. Friendship ties during adolescence allow the development of social and personal skills, specifically the skills to start constructing identity. In an inclusive context that incorporates young people with a disability, friendship among peers also takes place. Nonetheless, the relation is shaped, among others, by the alterity construction about the other with disability. Research about peers’ relation between young people with and without disability in an inclusive context has shown that the relation tends to become a helper-helpee relation, where those with a disability are seen as people in need. Prejudices about the others’ condition or distancing from the other because of his/hers disability are common. In this sense, the helper-helpee relation, as a non-reciprocal and protective relation, will not promote friendship between classmates, but a rather asymmetric alterity. Our research is an explorative case study that wants to know how the relation between peers is shaped within a different inclusive program, were also the integrated group has special educational needs. Therefore, we analyze from a qualitative and quantitative approach the data of an inverted inclusive program. This is a unique case of a special public school for visual disability in Germany that includes young people from a mainstream school who had learning difficulties. For the research, we analyze data from interviews, focal interviews and open-ended questions with an interpretative phenomenological analysis approach. The questionnaires include a five point Likert scale, for which we calculate the acceptance rate. The findings show that the alterity relation between pupils is less asymmetrical and represents a rather horizontal alterity. The helper-helpee relation is marked by exchange, since both groups have special educational needs and therefore, those with visual disability and those with learning difficulties help each other indistinctly. Friendship is more present among classmates. The horizontal alterity peers’ relation is influenced by a sort of tie, where none of the groups need more or less help than other groups. Both groups identify that they themselves and the other have special needs. The axiological axe of alterity is not of superiority or inferiority, recognizing each other’s differences and otherness. Another influential factor relates with the amount of time they spend together, since the program does not have a resource room or a teacher who teaches parallel lessons. Two probable causes for that rather equal peer relation might be the constellation of fewer pupils per classroom and the differentiated lessons taught by teachers with a special educational formation.

Keywords: alterity, disability, inverted inclusion, peers’ relation

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Authors: Farah Al-Shatti, Elsayed El-Khamisi, Nabel Suleiman

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The study aimed at identifying the relationship between self-injury behavior and social skills among children with mild intellectual disability (ID) in the state of Kuwait. The sample of the study consisted of 65 males and females with ID; their ages ranged between 8 to 12 years. The study used a measure for rating self-injury behavior designed by the researcher; and a measure for rating social skills was designed. The results of the study showed that there was an increase in the percentages of the two dimensions of the self-injury behavior for children with ID; the self-injury behavior by child’s own body was higher than the self-injury behavior by environmental tools, additionally the results showed that there were statistically significant differences between males and females on the dimensions and total scorer of self-injury scale favor the males, and there were statistically significant differences between them on the dimensions of the social skills and total score favor the females, It also indicated that there was statistically significant negative relationship between the dimensions of the self-injury and the dimensions of the social skills for children with intellectual disability.

Keywords: mild intellectual disability, self injury behavior, social skills, state of Kuwait

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