Littérature scientifique sur le sujet « Cultural disability studies »

The article explores possible intersections between cultural disability studies and the blue humanities. It opens with a discussion of cultural representations of atypical aquatic mammals and fish. Yet, the main focus is placed on various contemporary literary texts (Mateusz Pakuła’s Wieloryb: The Globe, John Wilson’s From the Depths, and Kaite O’Reilly’s In Water I’m Weightless), which were written either by or for artists with disabilities. As will be shown, all of them allude to water or/and marine environment in order to comment on disability, its social constructedness and context dependence, and the conservation of biological and cultural diversity. In doing so, these texts challenge the fixedness of the disabled/non-disabled binary and subtly hint at a possibility of transgressing the traditional opposition between the human and the animal. This in turn points to the potential of applying the oceanic perspective, or what Philip Steinberg and Kimberley Peters call ‘wet’ and ‘more-than-wet’ ontologies, in disability studies.

AMIDST THE CAST OFAnthony Trollope'sBarchester Towers(1857) is the stunningly beautiful “Signora Madeline Vesey Neroni,” who turns the heads of readers and characters alike. “It was impossible,” the narrator informs us, “that either man or woman should do other than look at her” (ch. 10). Dark and mysterious, brilliant and alluring, Madeline Neroni entices the swains of Barchester to pay her court, then toys with them mercilessly and enjoys watching them writhe. The fact that she is both beautiful and without compunction may do little to set her apart from other Victorian villainesses, Trollope's Lizzie Eustace, for instance, Wilde's Mrs. Cheveley or, more infamously, Thackeray's Becky Sharpe, but while Lizzie, Mrs. Cheveley, and Becky ultimately meet with poetic justice, their fortunes descending as their ruthless self-interest becomes increasingly apparent, Madeline keeps herself carefully protected. Pristinely beautiful from first to last, La Signora Neroni guards her virtue and maintains an even temper, bemused both by those who hate her and by those who court her, ultimately returning with her family to their home in Italy, apparently unchanged by her experience in Barchester society. Madeline has a strange kind of integrity; she is a powerful figure, a force to be reckoned with, able to stand up with equal ease and self-assurance to the daunting Mrs. Proudie, the earnest Arabin, and the slick Mr. Slope.

While disability studies has opened up new discursive spaces for revising cultural attitudes and beliefs about disability, its increasing legitimation in the contemporary academy comes with conflicts. The university as a research location cannot merely divorce itself from the ethical and restrictive practices that have characterized the past two centuries. In fact, it does so only at its own risk and, even more important, at the risk of further entrenching disabled people in its institutional grounding. The institutionalization of disability studies is just that—a formal cultural ingestion process that churns out knowledge about disability while resisting reflexive inquiries about whether or not more detail is inherently better. More knowledge is inherently better for the institution because it keeps the research mill active, but here we want to contemplate the degree to which generating more professionally based data about disability threatens to reproduce some of the problems that have characterized the study of disability to this point in history.

Disability theory privileges masculinist notions of presence, visibility, material “reality,” and identity as “given.” One effect of this has been the erasure of “sensibility,” which, it is argued, inscribes, materializes, and performs the critique of binary thought. Therefore, sensibility must be re-articulated in order to escape the “necessary error” of identity implicit in accounts of cultural diversity, and to dialogue across difference in ways that dislocate disability from its position of disvalue in feminist thought.

Includes bibliographical references
In South Africa, children with severe disabilities are often the most neglected in terms of planning and providing appropriate interventions. For those with severe communication disabilities, an additional lack is in the area of the basic human right to meaningful interactions and communication. Sustainable strategies to provide opportunities for basic communicative participation of these children are urgently sought. The focus of this study, grounded in the transformative paradigm, was on culturally determined processes that can increase and enrich the communicative participation of children with severe communication disabilities in an isiXhosa language and cultural context. The aims of the study were: * to identify culturally determined non-verbal and pragmatic elements of social interaction in an isiXhosa language context. * to identify culturally appreciative strategies to support the communicative participation of children with severe communication impairments in this context. The participants were 44 mothers and/or primary carers of children with severe cerebral palsy from an under-resourced peri-urban isiXhosa speaking context in the Western Cape. The method comprised an action research journey with iterative cycles of collaborative action, reflection and subsequent further planning with participants. Data collection included action reflection group sessions, reflective dialogues with the group facilitators, and participant observations. All data was qualitative. Data analysis included a process of in-group collaborative analysis and verification followed by reflective dialogues with the group facilitators and interpretive thematic content analysis. The findings included 12 action learning outcomes, from which two main themes were identified, directly responding to the two main aims of the study. Findings that were considered new were framed as three theses: Thesis 1: Relationships are the context and motivation for communicative participation: the social inclusion and non-ostracism of mothers need to be prioritised in order for them and their children to enjoy communicative participation. Thesis 2: The 'Middle Ground' is a valuable positionality in implementing transformative action learning as an intervention approach. Thesis 3: There is a need to reframe culture as a resource in supporting the communication development of children with severe communication disabilities. In conclusion, implications for clinical practice, for training, for policy planning and implementation and for further research are discussed. Practical suggestions for application by mothers and others caring for children with severe communication disabilities in similar contexts are included.

Digital Citizenship is a concept typically used in discussions of how technology impacts our relationships with others and our physical world communities. It is also used to describe ways that we can leverage our technology use and skill to make our communities and nations better and stronger. Educators are now teaching "good digital citizenship" as part of a larger civics curriculum.

But, there is a second, emerging concept that I refer to as platform specific digital citizenship. I define this platform specific citizenship as the deep and abiding commitment and sense of responsibility that people develop in relation to a particular technology, such as software or technology brand. It may also refer to the ideas that people express in regard to how technology should ideally be used and what rights and responsibilities it requires of its adherents.

Massively Multiplayer Online Worlds (MMOWs) are one place researchers are finding this deep, platform specific digital citizenship emerging. These are persistent digital universes where people from all over the world develop online personas, leadership structures, discussion forums, and business and non-profit entities. The ability and extent to which this online organization is possible is largely due to the underlying structure, rules and allowances of the world of which people choose to be a part.

One online world, Second Life, has a large, active and vocal disabled population. They have committed to this environment because of the unique opportunities and freedoms that it provides. As a user content created environment, residents, as Second Life participants are referred to, are given an unprecedented amount of freedom to create the kind of experience they want. This may involve developing relationships and projects with other disabled residents. It can also involve exploring other aspects of themselves and their interests that are often neglected in their real lives due to social exclusion, and/or lack of financial and physical access.

Most of the research and popular media examinations of disability in Second Life centers on participation in disability specific communities or the benefits of identity exploration through avatar design. But, the reasons disabled people stay here is much broader and varied than what this limited discussion suggests. Commitment to Second Life is strong precisely because disability community commitment and disability expression are not the only options but exist among a wide range of choices. Moreover, the expression of disability and use of such mediated environments is constantly debated in both word and deed.

This dissertation explores the concept of digital citizenship and why people that identify as disabled in real life are attracted to committed participation in virtual worlds, in particular, Second Life. What opportunities and rights are disabled people afforded here through the technology structure? What are the avenues of entry into the Second Life community, and what does the variety of these entry points and special interest sub-communities tell us about what is important to them? How is commitment debated and deepened through the use of public spaces and forums? And, what can researchers, public health and information professionals learn from these features that can improve their own outreach?

A cell phone is an electronic communication device that helps break down the distance barriers between people, with added mobility advantages. For some users a cell phone is more than a communication device; it may be used as a fashion accessory, and for some the cell phone is needed to seek help in emergency situations. The cell phone market has been expanding globally over the past decade, with approximately 423 million sold globally in the year 2002 (Kiljander & Johanna, 2003). According to the CIA World Factbook (2006), the UK has more cell phones than people. The global expansion of cell phone companies may impose problems to cell phone users, since unlike the personal computer industry the cell phone industry has no standard interface, and manufacturers have the freedom to gradually improve the user interface (Kiljander & Johanna, 2003). For a user interface to be well accepted by a target population it is necessary to identify and explore the underlying design preferences. User interfaces of new technology may lead to anxiety and delayed technology acceptance, especially for users with disabilities. Even though the need for users participating in the design process has been realized, users with disabilities are not always included in the design process (Newell & Gregor, 2001). This study followed a participatory design process, to compare and contrast the cell phone interface design preferences of users from two different nations, including users with no apparent disability and users with visual disabilities. A study was conducted to identify possible relationships between national culture, disability culture and design preferences of cell phone interfaces. The theoretical framework used to guide this study was Hofstede's (1991) five dimensional cultural model. Various studies have explored cross-cultural interface design and found some relationship of these cultural dimensions with interface design components (Choi et. al., 2005; Marcus, 1999; Marcus and Gould, 2001). This study included 13 product interactive focus groups, with a total of 69 participants, 34 in India and 35 in the United States, of the age group 19-50 years. There were 4 units of analyses in this research study. This included a control group of users without any apparent disability and a disability group with a visual disability of legal blindness. The two countries, India and the United States, were selected for this comparative study because of their diverse cultural backgrounds and the rapid expansion of cell phone usage which they are witnessing. The four units of analyses differed in their cultural dimensions. There were no significant correlations found on Design preferences of cell phone features based on Choi et at. (2005)'s study on mobile services with Hofstede (1990)'s cultural dimensions. However the relationships of some these features with the underlying cultural dimensions were found when group level analysis instead of the individual level of analysis was undertaken. Differences were also found in the ratings of the hardware attributes between disability groups and differences in usability ratings were found based on nationality and disability groups. The content analysis of the focus group sessions provided an insight to the preferences on cell phone interface components and the gave a better understanding of the mobile/cell phone culture in the two countries. These results are summarized to provide guidelines for designing cross-cultural user interfaces that are nationality specific and disability specific. A pyramid model for a holistic process of designing cell phones for users with disabilities integrated the findings of this thesis and Jordon (2002)'s pleasurability framework is proposed in the conclusion section of this thesis.
Master of Science

La straordinaria attenzione sociale e culturale che nelle ultime decadi si è rivolta alla diagnosi di autismo/sindrome di Asperger chiama a una riflessione più ampia per contestualizzarne levenienza come oggetto culturale. Il presente lavoro muove in tale direzione, proponendosi di individuare le coordinate sociali, istituzionali e culturali che hanno portato a una simile esposizione delle disabilità relazionali. Storia quindi dello spettro autistico e sua preistoria, ovvero ricerca su come le forme della non conformità alle attese dellaltro nellinterazione in presenza siano state tematizzate, anteriormente al modello medico e ai suoi albori. A fianco della ricerca storica si è inoltre cercato di sostanziare il discorso di contestualizzazione culturale dello spettro autistico in quellambito settoriale dei Disability Studies che sono i Critical Autism Studies attraverso una ricognizione degli autori e dei temi.
A extraordinária atenção social e cultural que nas últimas décadas tem se dado ao diagnóstico do autismo/síndrome de Asperger convida a uma reflexão mais ampla para contextualizar o seu acontecimento como objeto cultural. É nesta direção que se move o presente trabalho, buscando identificar as coordenadas sociais, institucionais e culturais que levaram a tal exposição da deficiência relacional. Fala da história do espectro do autismo e sua pré-história ou a investigação sobre como as formas de não-conformidade com as expectativas da interação na presença do outro foram contextualizados, antes do modelo médico e em seus primeiros dias. Além disso, também têm procurado articular o discurso da contextualização cultural do espectro do autismo na area dos estudos sobre a deficiência chamada Critical Autism Studies por meio de um levantamento analítico dos autores e dos temas.

Beauty defined by nonvisual means is an area of exploration long overdue. The question on what or whom is considered beautiful or attractive is often left up to each individual, and dependent on the culture in which said beauty is visually seen. This research identified the physical characteristics of Western standards of beauty among women who are visually impaired. The main objective was to explore how women who are visually impaired or blind defined both physical and non-physical beauty, in addition to how they navigated ocularcentric standards of beauty. In-depth, semi-structured interviews were conducted with 10 women who are visually impaired or blind that live within the United States. Their interviews were transcribed and analyzed to critique the components of beauty within the cultural lens of women who are visually impaired or blind. What was taken from the data was then used to consider ways in which women can empower themselves without using visual means to define and describe who they are.

Introdução: O Cardiff Acne Disability Index (CADI) é um instrumento originalmente desenvolvido na língua inglesa para mensurar a qualidade de vida de pacientes com acne. Considerando o impacto psicossocial desta doença, é importante dispormos de instrumentos culturalmente e linguisticamente validados para o uso em adolescentes brasileiros. Objetivo: O objetivo deste estudo é traduzir o CADI para o Português falado no Brasil (CADI-PB), adaptá-lo culturalmente e determinar sua confiabilidade e validade em pacientes adolescentes com acne. Métodos: 1) Etapa 1 – Tradução e validação cultural: O CADI foi traduzido e validado linguisticamente para o Português brasileiro (CADI-PB) de acordo com as diretrizes internacionais publicadas. 2) Etapa 2 – Validação: O CADI-PB, juntamente com os escores CDLQI (Índice de Qualidade de Vida em Dermatologia Infantil) e DLQI (Índice de Qualidade de Vida em Dermatologia) foram aplicados em paciente adolescentes (12-20 anos) portadores de acne. O Índice Global de Classificação da Acne (GAGS) foi utilizado para medir a gravidade clínica da doença. A consistência interna do CADI-PB foi avaliada pelo coeficiente alfa de Cronbach e a validade concorrente foi medida pelo coeficiente de correlação de Spearman e Teste T de Student para amostras pareadas. A validade de construto foi examinada por análise fatorial. Resultados: Um total de 100 adolescentes respondeu ao questionário. A versão CADI-PB apresentou boa confiabilidade e consistência interna (coeficiente alfa de Cronbach = 0,73). A validade concorrente da escala foi sustentada por uma correlação forte e significativa com os instrumentos CDLQI/DLQI (rs=0,802;p<0,001). A análise fatorial explanatória revelou a presença de duas dimensões subjacentes que explicam a escala. Conclusões: A versão CADI-PB é uma ferramenta confiável, válida e valiosa para mensurar o impacto da acne na qualidade de vida de pacientes adolescentes.
Background: The Cardiff Acne Disability Index (CADI) is an instrument originally developed in English language for measuring quality of life of acne patients. Considering the psychosocial impact of this disease, it is important to have instruments culturally and linguistically validated for use in Brazilian adolescents. Objective: The aim of this study was to translate the CADI into Brazilian Portuguese (CADI - PB), culturally adapt it, and verify its reliability and validity in adolescent patients with acne. Methods: 1) Step 1 - Translation and cultural validation: The CADI was translated and linguistically validated for Brazilian Portuguese (CADI - PB) in accordance with international guidelines published. 2) Step 2 - Validation: The CADI-PB, along with the CDLQI (Index of Quality of Life in Children's Dermatology) and DLQI (Index of Quality of Life in Dermatology) scores were applied to adolescents (12-20 years) patients with acne. The Global Acne Grading System (GAGS) was used to measure the clinical severity of the illness. The internal consistency of the CADI-PB was assessed by Cronbach's alpha coefficient and the concurrent validity was measure by the Spearman correlation coefficient and Student's t test for paired samples. Construct validity was assessed by factor analysis. Results: A total of 100 adolescents completed the questionnaire. The CADI-PB version showed good reliability and internal consistency (Cronbach's alpha = 0,73). The concurrent validity of the scale was supported by a strong and significant correlation with CDLQI / DLQI instruments (rs=0.802;p<0.001). Factor analysis revealed the presence of two underlying factor structure of the scale dimensions. Conclusions: CADI-PB version is a reliable, valid and valuable tool to measure the impact of acne on quality of life in adolescent patients.

This dissertation presents an historical overview of the interdependent representations of gender, class, ethnicity, race, nationality, sexuality, and (dis)ability in a selection of films and first-person written autobiographical texts from the 1940s to the early twenty-first century. Cinematic and written autobiographical representations of “mental illness” reflect and shape various models of psychological trauma and wellness. I explore the ways that these two genres of representation underscore, exert influence upon, and interrogate socio-cultural understandings and interpretations of deviance and normalcy, madness and sanity, and pathology and health. Some models of health and illness carry more ideological weight than others, and thus differentially contour public policy formation and the materiality of people’s daily lives. My project is distinct from other kinds of scholarship on the subject of women’s “madness.” Whereas scholarship has been written on “madness” and cinema, and on “madness” and autobiography, this related academic work has not consistently drawn linkages between multiple genres or utilized interdisciplinary methodologies to critically explore texts. Feminist scholars who address the interconnections between autobiographies and cinematic representations often pay only limited attention to psychiatric survivors. I draw parallels and distinctions between these genres, based upon my training in social work, cultural studies, film and autobiography theory, medical and linguistic anthropology, and disability studies. My perspective hinges upon my longstanding involvement with and commitment to the subject of women’s “madness” in both personal and professional arenas.

O paradigma da inclusão é um tema que vem sendo sistematicamente debatido no âmbito da legislação educacional brasileira desde a década de 1990. Porém, após quase trinta anos de políticas públicas de incentivo à inclusão das pessoas com deficiência nas escolas regulares, ainda nos deparamos com discursos que questionam sua legitimidade. Atualmente, a diretriz política educacional é a da inclusão escolar, muito embora a produção científica referente às experiências escolares, assim como as práticas administrativas e pedagógicas no chão da escola revelem que os valores da integração ainda permeiam o ideário educacional, indicando que há um descompasso entre as políticas públicas e as práticas educacionais. Entendemos que tais contradições, para serem compreendidas, implicam a reflexão sobre o lugar social das chamadas pessoas com deficiência aqui denominadas como pessoas com diferenças funcionais. Lugar social que supõe discussões sobre a produção da anormalidade, de corpos normofuncionais e dos processos educacionais. Por sua vez, a Educação Física tem sido concebida a partir de perspectivas historicamente fundamentadas em princípios elitistas, excludentes, classificatórios e monoculturais. Neira e Nunes (2009) têm discutido sobre o currículo cultural da Educação Física. O objetivo foi acompanhar a produção do currículo em ação de Educação Física, fundamentado nos princípios do currículo cultural do componente, a fim de compreender seus efeitos no processo de inclusão escolar de pessoas com diferenças funcionais em um Centro educacional integrado de jovens e adultos Cieja. O recorte estabelecido foi o da modalidade de Educação de jovens e adultos/as em uma escola da rede pública de ensino do município de São Paulo, em que acompanhamos, por um ano e meio, a professora de Educação Física, a professora da sala de recursos multifuncionais e seus/suas estudantes. Trata-se de uma pesquisa qualitativa, de caráter exploratório, inspirada na etnografia. A experiência de campo constituiuse a partir da observação participante das aulas de Educação Física, de entrevistas semidirigidas com docentes e de grupo focal com estudantes, sendo todo o material registrado em um diário de campo. Concluímos que o currículo cultural da Educação Física abre possibilidades educacionais junto ao segmento populacional em foco ao reconhecer as diferenças entre os/as estudantes, estabelecendo uma ética das práticas corporais como manifestações da cultura. Foi possível apreender uma experiência de ressignificação das possibilidades de expressão e aprendizagem das pessoas com diferenças funcionais, em um paradigma que rompe com o capacitismo na Educação Física, posto que possibilitou o acolhimento dessa população de uma forma mais justa e alinhada a princípios democráticos. Entretanto, mesmo nesse campo teóricoprático, quando a discussão incide sobre as pessoas com diferenças funcionais, foram percebidos aspectos de ambiguidade, pois, em muitos momentos, há prejuízo de leituras de cunho social e cultural da realidade, com retomada de perspectivas de caráter orgânico. Na produção de conhecimento relativa aos Estudos Culturais, é incipiente o impacto da discussão sobre a produção social das diferenças funcionais, a organização desse grupo como movimento reivindicatório e as suas manifestações culturais. Nesse sentido, as teorias Crip apresentam-se como elementos fundamentais para fazer avançar os estudos comprometidos com a ruptura do ideário normofuncional de corpo.
The inclusion paradigm is a subject that has been systematically debated within the scope of Brazilian educational legislation since the 1990s. However, after almost thirty years of public policies to encourage the inclusion of people with disabilities in regular schools, we are still faced with speeches which question their legitimacy. Currently, the educational policy directive is that of school inclusion, although the scientific production referring to the school experiences, as well as the administrative and pedagogical practices on the school floor reveal that the values of integration still permeate the educational ideology, indicating that there is a mismatch between public policies and educational practices. We understand that these contradictions, to be understood, imply reflection on the social place of the so-called disabled people - here called people with functional differences. Social place that supposes discussions about the production of the abnormality, normofunctional bodies and the educational processes. In turn, Physical Education has been conceived from perspectives historically based on elitist, excluding, classificatory and monocultural principles. Neira and Nunes (2009) have discussed the cultural curriculum of Physical Education. In view of this context, our goal was to accompany the daily making of a curriculum-action of Physical Education, based on the principles of the cultural curriculum, n order to understand its effects in the process of school inclusion of people with functional differences in an integrated educational center for youth and adults Cieja. The established cut is the one of the modality of Education of young people and adults in a school of the public school of the city of São Paulo, where we accompany, for a year and a half, the Physical Education teacher, the teacher of the Room of Multifunctional resources and students. This is a qualitative research, exploratory in nature, inspired by ethnography. The field experience consisted of the participant observation of Physical Education classes, semistructured interviews with teachers and a focus group with students, all of the material being recorded in a field diary. We conclude that the cultural curriculum of Physical Education opens educational possibilities to the population segment in focus by recognizing the differences between the students, establishing an ethics of the corporal practices as manifestations of the culture. It was possible to perceive an experience of re-signification of the possibilities of expression and learning of people with functional differences, in a paradigm that breaks with the ableism in Physical Education, since it enabled the reception of this population in a fairer and aligned way with democratic principles. However, even in this theoretical-practical field, when the discussion focuses on people with functional differences, aspects of ambiguity have been perceived, since, in many instances, there is a loss of social and cultural readings of reality, with a resumption of character perspectives organic. In the production of knowledge related to Cultural Studies, the impact of the discussion on the social production of functional differences, the organization of this group as a protest movement and its cultural manifestations is incipient. In this sense, the Crip theories are presented as fundamental elements to advance the studies committed with the rupture of the normofunctional idea of body.

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Coordenação de Aperfeiçoamento de Pessoal de Nível Superior - CAPES
8 ABSTRACT In this century, worldwide, the theme of accessibility became an important guideline for governments and institutions to ensure the rights of people with disability to education, work, culture and leisure, and to improve their quality of life and participation in the mainstream. This involves the elimination of barriers in institutional settings, including higher education institutions, which have been historically selective and elitist. There are few studies showing how attitudinal, physical, informational-communicational, and pedagogical-curricular barriers are built and how students with disability meet and overcome them in order to have success in higher education. Therefore, this study focuses on the following question: How students with disability experience accessibility in higher education? From a cultural studies perspective, it aims to identify and analyze their experiences of accessibility (or not) at entrance examinations (access), during preparation until graduation (permanence and acquisition). A case study methodology, combined with the shadowing technique, was used to investigate the experiences of accessibility of six students (three male and three female) at Federal University of Paraíba, João Pessoa campus, in Brazil. Main findings show that: (a) accessibility is an issue that should be addressed prior to university entrance because there is a set of barriers that prevent access of people with disability, concerning information about graduate degrees and enrolment in entrance examinations, family social and economic situation, program choice; (b) both the federal government and the university are very slowly in moving towards an institutional policy of effective inclusion, and there is no monitoring or assessment procedures for the inclusion program in place (Programa Incluir), so there are still tough barriers for this group; (c) different types of accessibility are interdependent and mutually reinforcing, however attitudinal barriers seem to be the most relevant because when there is attitudinal access, in the first place, the other barriers tend to be reduced or eliminated; (d) in spite of the legal framework, higher education students with disability still know it superficially, or lack appropriate knowledge about their rights, and rarely use the existing legal system to ensure them. Their inner strength and the support arrangements which they develop on their own are what allow them to persist and accomplish their qualification in order to have better employment chances.
Neste século, mundialmente, o tema da acessibilidade se tornou uma importante diretriz para os governos e as instituições a fim de assegurar os direitos das pessoas com deficiência (PcD) à educação, trabalho, cultura e lazer, e melhorar sua qualidade de vida e participação nos espaços comuns. Isto envolve a eliminação de barreiras nas instituições, incluindo as de educação superior, que historicamente têm sido seletivas e elitistas. Ainda são escassos os estudos que mostram como as barreiras atitudinais, arquitetônicas, informacionais e comunicacionais, e pedagógico-curriculares são construídas e como as/os estudantes com deficiência (EcD) as encontram e as superam a fim de alcançar sucesso na formação superior. Assim, este estudo enfoca a seguinte questão: Como EcD experienciam a acessibilidade no ensino superior? Seu objetivo é identificar e analisar, à luz dos Estudos Culturais, experiências de acessibilidade (ou não) no vestibular (acesso), durante a formação até a graduação (permanência e aquisição). A metodologia estudo de caso, combinada com a técnica de shadowing (acompanhar como sombra), foi usada para investigar as experiências de acessibilidade de seis estudantes (três do sexo masculino e três do sexo feminino) da Universidade Federal da Paraíba, campus de João Pessoa. Os principais achados mostram que: (a) a acessibilidade é um tema que deve começar a ser tratado muito antes do vestibular porque existe uma série de barreiras que impedem as PcD de ter acesso à educação superior, relativas ao acesso à informação sobre cursos de graduação e meios de realizar a inscrição para o vestibular, à situação familiar social e econômica e à escolha do curso de graduação; (b) o governo federal e a Universidade Federal da Paraíba são muito lentos para implementarem uma política institucional de inclusão efetiva e não há procedimentos de monitoramento e avaliação do Programa Incluir, portanto, as barreiras para esta população ainda são consistentes; c) os diferentes tipos de acessibilidade são interdependentes e influenciam-se mutuamente, contudo a acessibilidade atitudinal parece ser a mais relevante entre todas porque quando há acesso atitudinal as outras barreiras à acessibilidade tendem a ser reduzidas ou eliminadas; (d) apesar do marco legal, as/os EcD na educação superior ainda conhecem superficialmente ou não têm conhecimento apropriado sobre seus direitos e raramente fazem uso do sistema legal existente para assegurá-los. São a sua força interna e os esquemas de apoio que desenvolvem sozinhos que lhes permitem permanecer e concluir sua qualificação para ter melhores chances de emprego. Palavras-chave: estudante com deficiência, acessibilidade, educação superior, estudos culturais da deficiência.

Anthropocentric museums are “an important place in public debate, creation and questioning ideas” because they can have a positive impact on the lives of underprivileged or marginalized people. They can also strengthen specific communities and contribute to the creation of fairer societies. The science of Museology together with the science of Special Education and Training (SET) support with the Targeted Individual Structured and Integrated Program for Students with Special Educational needs (TISIPfSEN), in children and young people with special educational needs and disabilities (SENDs). The purpose of this work was to study museology applications in accordance with the pedagogical tool TISIPfSEN. The main working hypothesis explored access to theatre and entertainment events, museums and archaeological sites of people with SENDs, which is not always an easy process given that they are a heterogeneous group due to their inherent or acquired specificity. The applications also drew pedagogical materials through the charm of the art of theatre and puppetry. In this context, performances were given free of charge through the Kalamata Experimental Stage to children and young people with SENDs, in the city of Kalamata and Sparta. This project led to voluntary application from students of department of history of University of Peloponnese. The results showed that people’s disability does not always mean impotence. Accessibility to museum programs and theatrical events in modern organized societies is possible. The learning process becomes accessible with the pedagogical tool TISIPfSEN to people with special needs. Necessary conditions, knowledge in the SET and the necessary training of all according to universal design. In conclusion, TISIPfSEN museum pedagogical programs facilitate different social groups in approaching, understanding the differential material culture, with alternative forms of communication and learning, given that heterogeneity in nature is a universal phenomenon.

The POERUP project This paper presents research, analysis and policy recommendations from the POERUP (Policies for OER Up Take) project. The overall aim is to develop policies to promote the uptake of OER, especially across the EU, in all main educational sectors. The project has already created an inventory of more than 400 OER initiatives worldwide, documented on the project wiki. POERUP has produced 11 country reports and 19 mini-reports and is finalising seven case studies of notable OER initiatives. Outcomes of our research In the schools sector, it appears that there are very large numbers of European OERs which are potentially appropriate for K-12 education, a significant proportion of which emanate from museums, galleries, archives and national broadcasters. Although there appears to be some uncertainty concerning the availability of K-12 OER, they form potentially a valuable element in policy responses to austerity and to improve the learner experience in the school sector. However our research reports a range of barriers and disincentives to using OER. Although the development of vocational training has been a subject of enhanced political cooperation at the European level during the past decade, only one of the notable OER initiatives we have catalogued is targeted towards the VET sector and there is little evidence of any national or regional policies on OER for VET. In Universities the various schemes for quality in OER are so far ignored by national HE quality agencies or governments - not surprising when they mostly ignore similar schemes for quality in e-learning, even though e-learning (on- or off-campus) has far greater penetration than OER. Types of policy interventions Our research leads us to recommend three strands of policy interventions: o Linking OER to open access to research and to standards. o Fostering the phenomena that OER is said to facilitate. o Reducing the barriers to creation of innovative institutions and innovative practices. POERUP has produced three draft EU-level policy documents for universities, VET and schools. This paper integrates recommendations from the three sectors. POERUP is also producing policy documents for 5 Member States. Policy recommendations for the Commission and Member States OER is part of the broader fields of e-learning and distance learning and many of our recommendations are applicable in these broader contexts. They are grouped under seven headings and all are mapped against Opening Up Education; recommendations to Member States are specified. Communication and awareness raising: o Continue to promote the OER related initiatives currently being funded. o Facilitate exchange of experiences from national programmes between Member States. o Mount a campaign to educate university and school staff on IPR issues. Funding mechanisms and licensing issues o Ensure that any public outputs from EU programmes are available as open resources. o Continue to promote the availability and accessibility of open resources created through its cultural sector programmes. o Create an innovation fund for the development of online learning resources and assembling/ creating pathways to credentials. o Use Erasmus+ and Horizon 2020 to encourage partnerships between creators of educational content to increase the supply of quality OER and other digital educational materials in different languages, to develop new business models and to develop technical solutions. o Establish a European Hub of Digitally Innovative Education institutions, complemented by a specific European Award of Digital Excellence. o Authorities developing the EHEA should reduce the regulatory barriers against new non-study-time-based modes of provision. o Encourage Member States to increase their scrutiny of the cost basis for university teaching and consider the benefits of output-based funding for qualifications. o Support the development of technological methods to provide more and standardised information on IPR to the users of digital educational content. o Member States should ensure that budgets for digital educational resources are flexible enough to support the development (and maintenance) of openly licensed materials. Quality issues o Require OER to meet (disability) accessibility standards and should ensure that accessibility is a central tenet of all OER programmes and initiatives. o Establish a European quality assurance standard for OER content produced in Europe. o Member States should ensure that OER are allowed to be included on approved instructional materials lists. o Member States should consider establishing and funding an OER evaluation and adoption panel. Teacher training and continuous professional development o Encourage Member States to establish incentive and award schemes for teachers engaged in online professional development of their pedagogic skills, including online learning. o Member States should establish a professional development programme to support CPD on the creation, use and re-use of OER, with coverage of distance learning, MOOCs and IPR issues. Certification and accreditation o Drive forward the development of EQF and encourage Europe-wide validation of learning acquired online. o Foster the development of transnational accrediting agencies and mutual recognition of accreditations across the EU. o Explore and test digital competence frameworks and self-assessment tools for learners, teachers and organisations, including the tailoring of 'open badges' to the needs of learners. Infrastructure issues o Continue its focus on improving the ICT in education infrastructure in Members States to enable them to exploit potential pedagogical and financial advantages of OER. Further research o Develop its understanding of new modes of learning (including online, distance, OER and MOOCs) and how they impact quality assurance and recognition. o Support research into the benefits of OER & sustainable business models. o Launch a platform open to all stakeholders to record and benchmark the digital state of educational institutions.

In the field of Product design, basic and applied research addresses the issue of inclusion through a theoretical-methodological and experimental development approach, aimed at specific user groups with personal needs (anthropometric, postural and use) or with reduced possibility of action and movement.Thus, the solutions and product innovations on the market are mostly partial, specialized and hyper-functional, and they don’t consider, as far as possible, everyone's needs through an inclusive approach to the project.Today, the culture of design evolves towards Design for All (DfA). It is the design for human diversity, social inclusion and equality (EIDD Declaration of Stockholm, 2004), which aims, instead, to extend the active and autonomous, comfortable and pleasant use of products to the widest variety of subjects, different from each other for culture or perceptive, motor and cognitive abilities.In this problematic context and in the perspective of the transition towards social inclusion, this paper proposes a discussion and a theoretical-critical reflection on the application of DfA tools and methods and presents the results of the elaboration and experimental development referred to a dynamic Top concept for a highly inclusive kitchen. The aim of this research is to prefigure a kitchen system able to offer users a more inclusive and personalized access, to respond to the cognitive and physical needs of the different possible targets, in an equitable way and without creating ghettoizations or specializations, to modify and adapt its own characteristics over time in order to guarantee a socially inclusive use.In particular, the studio is critically confronted with the experiences that take place in many parts of the world that develop and manufacture more accessible products in the kitchen supplies sector, to arrive at the development of a concept of a highly inclusive kitchen worktop by applying the methodology of DfA.The design process activities concern a pre-concept phase for the identification of problematic nodes, and, by means of an anthropometric verification, of the size and minimum dimensions of the product.This is followed by a phase of generation and selection of the most promising ideas to come finally, in the final phase, to the development of the product concept and a subsequent empirical validation of the degree of innovation achieved through virtual models and scale prototypes.The concept of a typically innovative kitchen worktop for all, represents the starting point and the methodological basis for the search for new solutions in the various areas of Product design, able of responding effectively to the pressing and urgent questions posed by inclusive society. The result demonstrates the concrete possibility of overcoming the concept of design for disability by proposing as an alternative a design for all approach that promotes equality and equity of use.

Background Lung cancer is the number one cause of cancer death worldwide.(1) It is the fifth most commonly diagnosed cancer in Australia (12,741 cases diagnosed in 2018) and the leading cause of cancer death.(2) The number of years of potential life lost to lung cancer in Australia is estimated to be 58,450, similar to that of colorectal and breast cancer combined.(3) While tobacco control strategies are most effective for disease prevention in the general population, early detection via low dose computed tomography (LDCT) screening in high-risk populations is a viable option for detecting asymptomatic disease in current (13%) and former (24%) Australian smokers.(4) The purpose of this Evidence Check review is to identify and analyse existing and emerging evidence for LDCT lung cancer screening in high-risk individuals to guide future program and policy planning. Evidence Check questions This review aimed to address the following questions: 1. What is the evidence for the effectiveness of lung cancer screening for higher-risk individuals? 2. What is the evidence of potential harms from lung cancer screening for higher-risk individuals? 3. What are the main components of recent major lung cancer screening programs or trials? 4. What is the cost-effectiveness of lung cancer screening programs (include studies of cost–utility)? Summary of methods The authors searched the peer-reviewed literature across three databases (MEDLINE, PsycINFO and Embase) for existing systematic reviews and original studies published between 1 January 2009 and 8 August 2019. Fifteen systematic reviews (of which 8 were contemporary) and 64 original publications met the inclusion criteria set across the four questions. Key findings Question 1: What is the evidence for the effectiveness of lung cancer screening for higher-risk individuals? There is sufficient evidence from systematic reviews and meta-analyses of combined (pooled) data from screening trials (of high-risk individuals) to indicate that LDCT examination is clinically effective in reducing lung cancer mortality. In 2011, the landmark National Lung Cancer Screening Trial (NLST, a large-scale randomised controlled trial [RCT] conducted in the US) reported a 20% (95% CI 6.8% – 26.7%; P=0.004) relative reduction in mortality among long-term heavy smokers over three rounds of annual screening. High-risk eligibility criteria was defined as people aged 55–74 years with a smoking history of ≥30 pack-years (years in which a smoker has consumed 20-plus cigarettes each day) and, for former smokers, ≥30 pack-years and have quit within the past 15 years.(5) All-cause mortality was reduced by 6.7% (95% CI, 1.2% – 13.6%; P=0.02). Initial data from the second landmark RCT, the NEderlands-Leuvens Longkanker Screenings ONderzoek (known as the NELSON trial), have found an even greater reduction of 26% (95% CI, 9% – 41%) in lung cancer mortality, with full trial results yet to be published.(6, 7) Pooled analyses, including several smaller-scale European LDCT screening trials insufficiently powered in their own right, collectively demonstrate a statistically significant reduction in lung cancer mortality (RR 0.82, 95% CI 0.73–0.91).(8) Despite the reduction in all-cause mortality found in the NLST, pooled analyses of seven trials found no statistically significant difference in all-cause mortality (RR 0.95, 95% CI 0.90–1.00).(8) However, cancer-specific mortality is currently the most relevant outcome in cancer screening trials. These seven trials demonstrated a significantly greater proportion of early stage cancers in LDCT groups compared with controls (RR 2.08, 95% CI 1.43–3.03). Thus, when considering results across mortality outcomes and early stage cancers diagnosed, LDCT screening is considered to be clinically effective. Question 2: What is the evidence of potential harms from lung cancer screening for higher-risk individuals? The harms of LDCT lung cancer screening include false positive tests and the consequences of unnecessary invasive follow-up procedures for conditions that are eventually diagnosed as benign. While LDCT screening leads to an increased frequency of invasive procedures, it does not result in greater mortality soon after an invasive procedure (in trial settings when compared with the control arm).(8) Overdiagnosis, exposure to radiation, psychological distress and an impact on quality of life are other known harms. Systematic review evidence indicates the benefits of LDCT screening are likely to outweigh the harms. The potential harms are likely to be reduced as refinements are made to LDCT screening protocols through: i) the application of risk predication models (e.g. the PLCOm2012), which enable a more accurate selection of the high-risk population through the use of specific criteria (beyond age and smoking history); ii) the use of nodule management algorithms (e.g. Lung-RADS, PanCan), which assist in the diagnostic evaluation of screen-detected nodules and cancers (e.g. more precise volumetric assessment of nodules); and, iii) more judicious selection of patients for invasive procedures. Recent evidence suggests a positive LDCT result may transiently increase psychological distress but does not have long-term adverse effects on psychological distress or health-related quality of life (HRQoL). With regards to smoking cessation, there is no evidence to suggest screening participation invokes a false sense of assurance in smokers, nor a reduction in motivation to quit. The NELSON and Danish trials found no difference in smoking cessation rates between LDCT screening and control groups. Higher net cessation rates, compared with general population, suggest those who participate in screening trials may already be motivated to quit. Question 3: What are the main components of recent major lung cancer screening programs or trials? There are no systematic reviews that capture the main components of recent major lung cancer screening trials and programs. We extracted evidence from original studies and clinical guidance documents and organised this into key groups to form a concise set of components for potential implementation of a national lung cancer screening program in Australia: 1. Identifying the high-risk population: recruitment, eligibility, selection and referral 2. Educating the public, people at high risk and healthcare providers; this includes creating awareness of lung cancer, the benefits and harms of LDCT screening, and shared decision-making 3. Components necessary for health services to deliver a screening program: a. Planning phase: e.g. human resources to coordinate the program, electronic data systems that integrate medical records information and link to an established national registry b. Implementation phase: e.g. human and technological resources required to conduct LDCT examinations, interpretation of reports and communication of results to participants c. Monitoring and evaluation phase: e.g. monitoring outcomes across patients, radiological reporting, compliance with established standards and a quality assurance program 4. Data reporting and research, e.g. audit and feedback to multidisciplinary teams, reporting outcomes to enhance international research into LDCT screening 5. Incorporation of smoking cessation interventions, e.g. specific programs designed for LDCT screening or referral to existing community or hospital-based services that deliver cessation interventions. Most original studies are single-institution evaluations that contain descriptive data about the processes required to establish and implement a high-risk population-based screening program. Across all studies there is a consistent message as to the challenges and complexities of establishing LDCT screening programs to attract people at high risk who will receive the greatest benefits from participation. With regards to smoking cessation, evidence from one systematic review indicates the optimal strategy for incorporating smoking cessation interventions into a LDCT screening program is unclear. There is widespread agreement that LDCT screening attendance presents a ‘teachable moment’ for cessation advice, especially among those people who receive a positive scan result. Smoking cessation is an area of significant research investment; for instance, eight US-based clinical trials are now underway that aim to address how best to design and deliver cessation programs within large-scale LDCT screening programs.(9) Question 4: What is the cost-effectiveness of lung cancer screening programs (include studies of cost–utility)? Assessing the value or cost-effectiveness of LDCT screening involves a complex interplay of factors including data on effectiveness and costs, and institutional context. A key input is data about the effectiveness of potential and current screening programs with respect to case detection, and the likely outcomes of treating those cases sooner (in the presence of LDCT screening) as opposed to later (in the absence of LDCT screening). Evidence about the cost-effectiveness of LDCT screening programs has been summarised in two systematic reviews. We identified a further 13 studies—five modelling studies, one discrete choice experiment and seven articles—that used a variety of methods to assess cost-effectiveness. Three modelling studies indicated LDCT screening was cost-effective in the settings of the US and Europe. Two studies—one from Australia and one from New Zealand—reported LDCT screening would not be cost-effective using NLST-like protocols. We anticipate that, following the full publication of the NELSON trial, cost-effectiveness studies will likely be updated with new data that reduce uncertainty about factors that influence modelling outcomes, including the findings of indeterminate nodules. Gaps in the evidence There is a large and accessible body of evidence as to the effectiveness (Q1) and harms (Q2) of LDCT screening for lung cancer. Nevertheless, there are significant gaps in the evidence about the program components that are required to implement an effective LDCT screening program (Q3). Questions about LDCT screening acceptability and feasibility were not explicitly included in the scope. However, as the evidence is based primarily on US programs and UK pilot studies, the relevance to the local setting requires careful consideration. The Queensland Lung Cancer Screening Study provides feasibility data about clinical aspects of LDCT screening but little about program design. The International Lung Screening Trial is still in the recruitment phase and findings are not yet available for inclusion in this Evidence Check. The Australian Population Based Screening Framework was developed to “inform decision-makers on the key issues to be considered when assessing potential screening programs in Australia”.(10) As the Framework is specific to population-based, rather than high-risk, screening programs, there is a lack of clarity about transferability of criteria. However, the Framework criteria do stipulate that a screening program must be acceptable to “important subgroups such as target participants who are from culturally and linguistically diverse backgrounds, Aboriginal and Torres Strait Islander people, people from disadvantaged groups and people with a disability”.(10) An extensive search of the literature highlighted that there is very little information about the acceptability of LDCT screening to these population groups in Australia. Yet they are part of the high-risk population.(10) There are also considerable gaps in the evidence about the cost-effectiveness of LDCT screening in different settings, including Australia. The evidence base in this area is rapidly evolving and is likely to include new data from the NELSON trial and incorporate data about the costs of targeted- and immuno-therapies as these treatments become more widely available in Australia.