Journal articles on the topic 'Children with social disabilities – Education – Namibia Case studies'

Purpose Recently with increased legislative support and evidence-based studies on the importance of education for children with disabilities in China, special education programs and intervention and rehabilitation services have received more and more attention. There are limited studies on special education programs for children with disabilities located in China’s rural areas. This paper aims to select one special education program in China’s northeast rural area with a special focus on its curriculum design, accommodative services and teacher qualifications. Recommendations were provided on how to modify the curriculum to meet each child’s special needs, increase social interaction among children, increase teacher qualifications and improve teacher family collaboration. Design/methodology/approach The participating program serves orphans and children with disabilities between 6 and 18 years old and provides them 9-year free education, along with free textbooks, uniforms, food and boarding. Currently, there are approximately 100 students and 40 teachers, one director and one nurse. The teacher/staff and student ratio is 1:3. Data were collected through classroom observation and interviews. Afterward, the interview data were transcribed. Data were analyzed following Braun and Clarke’s (2006) six-step approach. The researcher reviewed the collected data, then coded the data and reviewed, refined and revised the codes, and finally themes and sub-themes were identified with quotations that support each theme/sub-theme. Findings The identified themes are accommodations, education plan and curriculum and teacher qualifications. Accommodations include, but are not limited to, visual and hearing aids. National unity textbooks were adopted, along with national syllabus objectives, as a guideline for instruction and evaluation of child progress. Teachers also adjust curriculum-based students’ individual needs. All teachers hold an associate degree in special education, and those who teach specials hold a higher degree in the specialty area. Given that there is no speech language pathologist, physical therapist, or occupational therapist, teachers with rich working experiences in the related field serve as special professionals. Research limitations/implications The current research reports the program design, accommodations for children with disabilities, curriculum and syllabus, parent/guardian role and teacher qualifications in the selected school. Given that the current study focuses on only one school located in the rural area of China’s northeast, it may represent special education programs in rural China, but it is hard to be generalized to provide a big picture of China’s special education programs in more developed, metropolitan areas. Practical implications The selected school offers accommodative services to students with disabilities; adjusts its curriculum to make it developmentally appropriate; and offers educational, medical and rehabilitation services to promote student development to the maximum. The selected school should improve teacher quality, increase social interaction between children with and without disabilities, modify the curriculum to cater to individuals with different severities of disabilities and increase family professional collaboration. Originality/value There is limited study on special education programs for young children with disabilities in China’s rural area. The current study fills this gap and studies a special education school that offers services to children as young as six years old located in a small town in the northeast of China. The special focus of the study includes program curriculum, accommodations, rehabilitation and intervention services and teacher qualifications in this program.

Special education must be interdisciplinary in order to ensure the comprehensive quality of education for children with special needs in general and children with developmental disorders in particular. For children with developmental disorders such as autism spectrum disorder, attention deficit hyperactivity disorder, learning disabilities, etc., regular education interventions are important as they provide children with essential knowledge and help them practice necessary skills before utilizing these skills in their social integration process. This article introduces intervention models used in an educational institution in combination with medical therapy and the effects of this combination in two case studies of children with developmental disorders. Through concrete evidence and results of clear case studies, the article desires to contribute to a clearer illustration of the combined model of health and education used in interventions for children with special needs in general and especially for children with developmental disorders in Vietnam.

Since the re-establishment of the Scottish Parliament in 1999, successive administrations have reaffirmed their commitment to social justice. However, despite high-level equality policies, social-class inequality is a major feature of Scottish society, affecting all social policy domains, including education. In this article, we provide a brief overview of the development of support for children with learning difficulties and disabilities within the context of Scottish comprehensive schooling. We then consider the way in which ideas of social justice are reflected in education for learners with additional support needs, whose numbers have expanded over recent years and who are particularly likely to live in the most deprived parts of Scotland. Using family case studies, we explore the experiences of families from different social backgrounds, whose children have been identified as having additional support needs. The data suggest that children living in deprived areas experience cumulative disadvantage, attracting stigmatising labels without the benefit of extra resources necessary to improve educational outcomes. By way of contrast, those from more advantaged areas are generally more successful in avoiding stigmatising labels while ensuring that facilitating resources are in place. Findings are discussed within Fraser’s three-dimensional framework of social justice, encompassing distribution, recognition and representation.

A child is a member of a vulnerable group in societies. Children's rights are equal for all children and they cannot be denied, because they are a birthright. However, throughout the world, children with disabilities and their families constantly experience a barrier in regard to the enjoyment of their basic human rights and to their inclusion in society. Their abilities are overlooked, their capacities are underestimated and their needs are given low priority. The barriers they face are more frequently a result of the environment in which they live rather than a result of their impairment. The situation began to change only when requirements to include disabled children in the education system were introduced in legislation. Following the example of other countries worldwide, the Republic of North Macedonia introduced inclusion of children with disabilities in the mainstream educational process, because the right to education is a right for all children, including the ones with special educational needs. For this purpose, the Republic of North Macedonia implemented a series of changes in the educational system for successful inclusion of children with special educational needs. Hence, the main aim of our paper is to represent the actual situation in Macedonian schools regarding the problem of educational inclusion of students with disabilities in the regular school system. The research methods are based on document studies and case studies about changes in social and educational policies for students with disabilities and special educational needs who are included in primary and secondary education. At the same time we shall present some guidelines for teachers who work with these children and future directions for a proper inclusion system in the Republic of North Macedonia, because every child has a fundamental right to education and must be given the opportunity to achieve and reach an acceptable level of learning. In this frame, school societies try to support full participation of students with disabilities in areas of their lives on equal terms, conditions, social justice and basic human rights.

Purpose The purpose of this study was to explore how speech-language pathologists (SLPs) who are augmentative and alternative communication (AAC) specialists approach the assessment process for 2 case studies, 1 child with cerebral palsy and 1 with autism spectrum disorder. The aim of the study was to answer the following questions: (a) How do clinicians with expertise approach the AAC assessment process for children with developmental disabilities? (b) Can any initial hypothesis be drawn about how SLPs approach the assessment of children with motor versus social interactive deficits? Method This study used a phenomenological qualitative design. The researchers conducted 2 in-depth, semistructured interviews with 8 SLPs who specialized in AAC and self-identified as primarily working with children. Results Four major themes emerged from the data: area of assessment, method of assessment, evaluation preparation, and parent education. Each major theme contained multiple subthemes and categories within those subthemes. Conclusions Participants discussed similar areas of assessment for both cases, indicating that some aspects of AAC assessment are universal. However, the specific aspects of what they were assessing and how they went about assessing them differed between the 2 cases. The results of the current study provide an outline of an assessment protocol for children with complex communication needs.

The article discusses the heuristic possibilities of objective and subjective approaches to determiningthe quality of life of individuals in modern society. In order to construct a measurement of the quality oflife of the population, objective and subjective indicators were defined in this perspective: quantitativeones that record the presence or absence of a certain property and qualitative ones that record the extentof its manifestation and development. For the empirical representation of the quality of life of residentsof the city of Dnipro, data from sociological studies, the «Dnipro – my hometown» and the fourth all-Ukrainian municipal IRI survey were used.Possibilities and conditions for self-realization of the person are characterized, subjective level ofevaluation of strategies of success, professional prospects, achievement of material well-being in theurban space is determined through the prism of age differentiation. Positive shifts in the perception of thecity as an inclusive space (the spread of inclusive education, the opening of children’s and playgrounds,which take into account the needs of children with disabilities , etc.) have been noticed.Characteristics of urban social life were determined through fragmentation, disunity, decentralization,dehumanization. They are becoming the markers of modern society. These processes affect the emotionalinternal state of the individual and determine the sphere of his social fears. The main factors that causeanxiety and fear in the mass consciousness of the residents of the city are related to economic issues –rising prices, loss of work, closure of enterprises. The structure of expenditures and the assessment ofwell-being, as well as the level of satisfaction with material goods, have been determined. The subjectivecharacteristic of the labor market and opportunities to engage in entrepreneurial activity are provided. Thegeneral summary of the quality of life in Dnipro is presented in the Summary of Capability AssessmentIndex.

RESUMENTradicionalmente, la transcripción de entrevistas, ya sea individuales o grupales, constituye, con frecuencia, el material empírico básico para llevar a cabo estudios cualitativos en ciencias sociales y de la educación. Sin embargo, la utilización de estrategias visuales (dibujos, fotografías, videos) se ha convertido en las últimas décadas en un recurso metodológico especialmente sensible y adecuado para aquellas personas que, por distintas razones, no tienen un nivel lingüístico o comunicativo desarrollado. Este es el caso, por ejemplo, de niños y niñas, personas de origen extranjero con poca competencia en la lengua de la sociedad de destino o de algunas personas con discapacidad intelectual. El objetivo de este artículo es describir e ilustrar la utilización metodológica de recursos visuales, así como discutir sus posibilidades, a partir de ejemplos de su uso desarrollados en tres investigaciones socioeducativas. ABSTRACTTraditionally, the transcription of interviews, either individual or group, has become the basic empirical material to conduct qualitative studies in social sciences and education. However, in the last few decades, the use of visual strategies (drawings, photographs, videos) has become a methodological resource, particularly sensitive and suitable for those people who do not have a level or communicative language developed for whatever reason. This is the case of children, people of foreign origin with less competence with the language of the society of destination or people with intellectual disabilities, for example. The objective of this article is to describe and illustrate the use of methodological visual resources within the framework of three research projects. We discuss the advantages and disadvantages of the use of these strategies through experience with the projects that are described and illustrated in this article.

Many studies have shown a link between being competent in early mathematics and achievement in school. Early math skills have the potential to be the best predictors of later performance in reading and mathematics. Movement and songs are activities that children like, making it easier for teachers to apply mathematical concepts through this method. This study aims to develop audio-visual learning media in the form of songs with a mixture of western and traditional musical idioms, accompanied by movements that represent some of the teaching of early mathematics concepts. The stages of developing the ADDIE model are the basis for launching new learning media products related to math and art, and also planting the nation's cultural arts from an early age. These instructional media products were analyzed by experts and tested for their effectiveness through experiments on five children aged 3-4 years. The qualitative data were analyzed using transcripts of field notes and observations and interpreted in a descriptive narrative. The quantitative data were analyzed using gain score statistics. The results showed that there was a significant increase in value for early mathematical understanding of the concepts of geometry, numbers and measurement through this learning medium. The results of the effectiveness test become the final basis of reference for revision and complement the shortcomings of this learning medium. Further research can be carried out to develop other mathematical concepts through motion and song learning media, and to create experiments with a wider sample. Keywords: Early Mathematical Skills, Movement and Song Idiom Traditional, Audio-visual Learning Media References An, S. A., & Tillman, D. A. (2015). Music activities as a meaningful context for teaching elementary students mathematics: a quasi-experiment time series design with random assigned control group. 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RESUMENEl nacimiento en la Antigua Roma de niños con rasgos sexuales masculinos y femeninos a la vez, los llamados andróginos o hermafroditas, eran considerados como un gravísimo prodigio. Su expiación, necesaria para el restablecimiento de las buenas relaciones entre los hombres y los dioses, quedó en manos exclusivamente de mujeres: ancianas, matronas y virgines.PALABRAS CLAVE: Antigua Roma, Matrona, prodigio, expiación, andróginoABSTRACTThe birth in ancient Rome of children with both male and female sexual features, so-called androgynes or hermaphrodites, was regarded as a an extraordinary phenomenon. Their expiation, necessary for the restoration of good relations between men and gods, remained exclusively in the hands of women: old women, midwives and virgines.KEY WORDS: Ancient Rome, midwife, prodigy, expiation, androgynus BIBLIOGRAFÍAAbaecherly Boyce, A. (1937), “The expiatory rites of 207 B. C.”, TAPhA, 68, 157-171.Allély, A. 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I want to argue here that the use of terms like “disabled” has very concrete and practical consequences; such language choices are significant and constitutive, not simply the abstract subject of a theoretical debate or a “politically correct” storm in a teacup. In this paper I want to examine some significant moments of conflict over and resistance to definitions of “disability” in an arts project, “In the Picture”, run by one of the UK’s largest disability charities, Scope. In the words of its webpages, this project “aims to encourage publishers, illustrators and writers to embrace diversity - so that disabled children are included alongside others in illustrations and story lines in books for young readers” (http://www.childreninthepicture.org.uk/aboutus.htm). It sought to raise awareness of “ableism” in the book world and through its webpage, offer practical advice and examples of how to include disabled children in illustrated children’s books. From 2005 to 2007, I tracked the progress of the project’s Stories strand, which sought to generate exemplary inclusive narratives by drawing on the experiences of disabled people and families of disabled children. My research drew on participant observation and interviews, but also creative audience research — a process where, in the words of David Gauntlett, “participants are asked to create media or artistic artefacts themselves.” Consequently, when I’m talking here about definitions of “disability’, I am discussing not just the ways people talk about what the word “disabled” might mean, but also the ways in which such identities might appear in images. These definitions made a real difference to those participating in various parts of the project and the types of inclusive stories they produced. Scope has been subject to substantial critique from the disability movement in the past (Benjamin; Carvel; Shakespeare, "Sweet Charity"). “In the Picture” was part of an attempt to resituate the charity as a campaigning organization (Benjamin; O’Hara), with the campaign’s new slogan “Time to get Equal” appearing prominently at the top of each page of the project’s website. As a consequence the project espoused the social model of disability, with its shift in focus from individual peoples’ bodily differences, towards the exclusionary and unequal society that systematically makes those differences meaningful. This shift in focus generates, some have argued, a performative account of disability as an identity (Sandhal; Breivik). It’s not simply that non-normative embodiment or impairment can be (and often is) acquired later in life, meaning that non-disabled people are perhaps best referred to as TABs — the “temporarily able bodied” (Duncan, Goggin and Newell). More significantly, what counts as a “disabled person” is constituted in particular social, physical and economic environments. Changing that environment can, in essence, create a disabled person, or make a person cease to be dis-abled. I will argue that, within the “In the Picture” project, this radically constructionist vision of disablement often rubbed against more conventional understandings of the term “disabled people”. In the US, the term “people with disabilities” is favoured as a label, because of its “people first” emphasis, as well as its identification of an oppressed minority group (Haller, Dorries and Rahn, 63; Shakespeare, Disability Rights). In contrast, those espousing the social model of disability in the UK tend to use the phrase “disabled people”. This latter term can flag the fact that disability is not something emanating from individuals’ bodily differences, but a social process by which inaccessible environments disable particular people (Oliver, Politics). From this point of view the phrase “people with disabilities” might appear to ascribe the disability to the individual rather than the society — it suggests that it is the people who “have” the disability, not the society which disables. As Helen Meekosha has pointed out, Australian disability studies draws on both US civil rights languages and the social model as understood in the UK. While I’ve chosen to adopt the British turn of phrase here, the broader concept from an Australian point of view, is that the use of particular sets of languages is no simple key to the perspectives adopted by individual speakers. My observations suggest that the key phrase used in the project — “ disabled people” — is one that, we might say, “passes”. To someone informed by the social model it clearly highlights a disabling society. However, it is a phrase that can be used without obvious miscommunication to talk to people who have not been exposed to the social model. Someone who subscribes to a view of “disability” as impairment, as a medical condition belonging to an individual, might readily use the term “disabled people”. The potentially radical implications of this phrase are in some ways hidden, unlike rival terms like “differently abled”, which might be greeted with mockery in some quarters (eg. Purvis; Parris). This “passing” phrase did important work for the “In the Picture” project. As many disability activists have pointed out, “charity” and “concern” for disabled people is a widely espoused value, playing a range of important psychic roles in an ableist society (eg. Longmore; Hevey). All the more evocative is a call to support disabled children, a favoured object of the kinds of telethons and other charitable events which Longmore discusses. In the words of Rosemarie Garland Thomson, the sentimentality often used in charity advertising featuring children “contains disability’s threat in the sympathetic, helpless child for whom the viewer is empowered to act” (Garland Thomson, 63). In calling for publishers to produce picture books which included disabled children, the project had invested in this broad appeal — who could argue against such an agenda? The project has been successful, for example, in recruiting support from many well known children’s authors and illustrators, including Quentin Blake and Dame Jackie Wilson. The phrase “disabled children”, I would argue, smoothed the way for such successes by enabling the project to graft progressive ideas —about the need for adequate representation of a marginalized group — onto existing conceptions of an imagined recipient needing help from an already constituted group of willing givers. So what were the implications of using the phrase “disabled children” for the way the project unfolded? The capacity of this phrase to refer to both a social model account of disability and more conventional understandings had an impact on the recruitment of participants for writing workshops. Participants were solicited via a range of routes. Some were contacted through the charity’s integrated pre-school and the networks of the social workers working beside it. The workshops were also advertised via a local radio show, through events run by the charity for families of disabled people, through a notice in the Disabled Parents site, and announcements on the local disability arts e- newsletter. I am interested in the way that those who heard about the workshops might have been hailed by —or resisted the lure of — those labels “disabled person” or “parent of a disabled child” or at least the meaning of those labels when used by a large disability charity. For example, despite a workshop appearing on the programme of Northwest Disability Arts’ Deaf and Disability Arts Festival, no Deaf participants became involved in the writing workshops. Some politicised Deaf communities frame their identities as an oppressed linguistic minority of sign language users, rather than as disabled people (Corker; Ladd). As such, I would suggest that they are not hailed by the call to “disabled people” with which the project was framed, despite the real absence of children’s books drawing on Deaf culture and its rich tradition of visual communication (Saunders; Conlon and Napier). Most of those who attended were (non-disabled) parents or grandparents of disabled children, rather than disabled people, a fact critiqued by some participants. It’s only possible to speculate about the reasons for this imbalance. Was it the reputation of this charity or charities in general (see Shakespeare, "Sweet Charity") amongst politicised disabled people that discouraged attendance? A shared perspective with those within the British disabled peoples’ movement who emphasise the overwhelming importance of material changes in employment, education, transport rather than change in the realm of “attitudes” (eg Oliver, Politics)? Or was it the association of disabled people undertaking creative activities with a patronising therapeutic agenda (eg Hevey, 26)? The “pulling power” of a term even favoured by the British disability movement, it seems, might be heavily dependent on who was using it. Nonetheless, this term did clearly speak to some people. In conversation it emerged that most of those who attended the workshops either had young family members who were disabled or were imbricated in educational and social welfare networks that identified them as “disabled” — for example, by having access to Disability Living Allowance. While most of the disabled children in participants’ families were in mainstream education, most also had an educational “statement” enabling them to access extra resources, or were a part of early intervention programmes. These social and educational institutions had thus already hailed them as “families of disabled children” and as such they recognised themselves in the project’s invitation. Here we can see the social and institutional shaping of what counts as “disabled children” in action. One participant who came via an unusual route into the workshops provides an interesting reflection of the impact of an address to “disabled people”. This man had heard about the workshop because the local charity he ran had offices adjacent to the venue of one of the workshops. He started talking to the workshop facilitator, and as he said in an interview, became interested because “well … she mentioned that it was about disabilities and I’m interested in people’s disabilities – I want to improve conditions for them obviously”. I probed him about the relationship between his interest and his own experiences as a person with dyslexia. While he taught himself to read in his thirties, he described his reading difficulties as having ongoing impacts on his working life. He responded: first of all it wasn’t because I have dyslexia, it was because I’m interested in improving people’s lives in general. So, I mean particularly people who are disabled need more care than most of us don’t they? …. and I’d always help whenever I can, you know what I mean. And then thinking that I had a disability myself! The dramatic double-take at the end of this comment points to the way this respondent positions himself throughout as outside of the category of “disabled”. This self- identification points towards the stigma often attached to the category “disabled”. It also indicates the way in which this category is, at least in part, socially organised, such that people can be in various circumstances located both inside and outside it. In this writer’s account “people who are disabled” are “them” needing “more care than most of us”. Here, rather than identifying as a disabled person, imagined as a recipient of support, he draws upon the powerful discourses of charity in a way that positions him giving to and supporting others. The project appealed to him as a charity worker and as a campaigner, and indeed a number of other participants (both “disabled” and “non-disabled”) framed themselves in this way, looking to use their writing as a fundraising tool, for example, or as a means of promoting more effective inclusive education. The permeability of the category of “disabled” presented some challenges in the attempt to solicit “disabled peoples’” voices within the project. This was evident when completed stories came to be illustrated by design, illustration and multimedia students at four British universities: Liverpool John Moores University, the University of Wolverhampton, the University of Teeside and the North East Wales Institute. Students attending an initial briefing on the project completed a questionnaire which included an item asking whether they considered themselves to be disabled. While around eight of the eighty respondents answered “yes” to this question, the answers of these students and some others were by no means clear cut. A number of students identified themselves as dyslexic, but contested the idea that this diagnosis meant that they were disabled. One respondent commented along similar lines: “My boyfriend was very upset that the university considers him to be disabled because he is dyslexic”. How can we make sense of these responses? We could note again that the identity of “disabled” is highly stigmatised. Many disabled students believe that they are seen as lazy, demanding excessive resources, or even in the case of some students with non- visible impairments, lying (Kleege; Olney and Brockman). So we could view such responses as identity management work. From this point of view, an indicator of the success of the project in shifting some of the stigma attached to the label of “disabled” might be the fact that at least one of the students participants “came out” as dyslexic to her tutors in the course of her participation in the project. The pattern of answers on questionnaire returns suggests that particular teaching strategies and administrative languages shape how students imagine and describe themselves. Liverpool John Moores University, one of the four art schools participating in the project, had a high profile programme seeking to make dyslexic students aware of the technical and writing support available to them if they could present appropriate medical certification (Lowy). Questionnaires from LJMU included the largest number of respondents identifying themselves as both disabled and dyslexic, and featured no comment on any mismatch between these labels. In the interests of obtaining appropriate academic support and drawing on a view of dyslexia not as a deficit but as a learning style offering significant advantages, it might be argued, students with dyslexia at this institution had been taught to recognise themselves through the label “disabled”. This acknowledgement that people sharing some similar experiences might describe themselves in very different ways depending on their context suggests another way of interpreting some students’ equivocal relationship to labels like “dyslexia” and “disabled”. The university as an environment demanding the production of very formal styles of writing and rapid assimilation of a high volume of written texts, is one where particular learning strategies of people with dyslexia come to be disabling. In many peoples’ day to day lives – and perhaps particularly in the day to day lives of visual artists – less conventional ways of processing written information simply may not be disabling. As such, students’ responses might be seen less as resistance to a stigmatised identity and more an acknowledgement of the contingent nature of disablement. Or perhaps we might understand these student responses as a complex mix of both of these perspectives. Disability studies has pointed to the coexistence of contradictory discourses around disability within popular culture (eg, Garland-Thomson; Haller, Dorries and Rahn). Similarly, the friezes, interactive games, animations, illustrated books and stand-alone images which came out of this arts project sometimes incorporate rival conceptions of disability side by side. A number of narratives, for example, include pairs of characters, one of which embodies conventional narratives of disability (for example, being diagnostically labelled or ‘cured’), while the other articulates alternative accounts (celebrating diversity and enabling environments). Both students and staff reported that participation in the project prompted critical thinking about accessible design and inclusive representation. Some commented in interviews that their work on the project had changed their professional practice in ways they thought might have longer term impact on the visual arts. However, it is clear that in student work, just as in the project itself, alternative conceptions of what “disability” might mean were at play, even as reframing such conceptions are explicitly the aim of the enterprise. Such contradictions point towards the difficulties of easily labelling individual stories or indeed the wider project “progressive” or otherwise. Some illustrated narratives and animations created by students were understood by the project management to embody the definitions of “disabled children” within the project’s ten principles. This work was mounted on the website to serve as exemplars for the publishing industry (http://www.childreninthepicture.org.uk/stories.htm). Such decisions were not unreflective, however. There was a good deal of discussion by students and project management about how to make “disabled children” visible without labelling or pathologising. For example, one of the project’s principles is that “images of disabled children should be used casually or incidentally, so that disabled children are portrayed playing and doing things alongside their non- disabled peers” (see also Bookmark). Illustrator Jane Ray commented wryly in an article on the website on her experience of including disabled characters in a such a casual way in her published work that no-one notices it! (Ray). As I’ve discussed in more detail elsewhere (Matthews, forthcoming), the social model, espoused by the project, with its primary focus on barriers to equality rather than individual impaired bodies, presented some challenges to such aims. While both fairytales and, increasingly, contemporary books for young people, do sometimes engage with violence, marginalisation and social conflict (Saunders), there is a powerful imperative to avoid such themes in books for very young children. In trying to re-narrativise disabled children outside conventional paradigms of “bravery overcoming adversity”, the project may have also pushed writers and illustrators away from engaging with barriers to equality. The project manager commented in an interview: “probably in the purest form the social model would show in stories the barriers facing disabled children, whereas we want to show what barriers have been knocked down and turn it round into a more positive thing”. While a handful of the 23 stories emerging from the writing workshops included narratives around bullying and or barriers to equal access, many of the stories chose to envisage more utopian, integrated environments. If it is barriers to inequality that, at least in part, create “disabled people”, then how is it possible to identify disabled children with little reference to such barriers? The shorthand used by many student illustrators, and frequently too in the “images for inspiration” part of the project’s website, has been the inclusion of enabling technologies. A white cane, a wheelchair or assistive and augmentative communication technologies can be included in an image without making a “special” point of these technologies in the written text. The downside to this shorthand, however, is the way that the presence of these technologies can serve to naturalise the category of “disabled children”. Rather than being seen as a group identity constituted by shared experiences of discrimination and exclusion, the use of such “clues” to which characters “are disabled” might suggest that disabled people are a known group, independent of particular social and environmental settings. Using this arts project as a case study, I have traced here some of the ways people are recognised or recognise themselves as “disabled”. I’ve also suggested that within this project other conceptions of what “disabled” might mean existed in the shadows of the social constructionist account to which it declared its allegiances. Given the critiques of the social model which have emerged within disability studies over the last fifteen years (e.g. Crowe; Shakespeare, Disability Rights), this need not be a damning observation. The manager of this arts project, along with writer Mike Oliver ("If I Had"), has suggested that the social model might be used strategically as a means of social transformation rather than a complete account of disabled peoples’ lives. However, my analysis here has suggested that we can not only imagine different ways that “disabled people” might be conceptualised in the future. Rather we can see significant consequences of the different ways that the label “disabled” is mobilised here and now. Its inclusion and exclusions, what it makes it easy to say or difficult to imagine needs careful thinking through. References Benjamin, Alison. “Going Undercover.” The Guardian, Society, April 2004: 8. Bookmark. Quentin Blake Award Project Report: Making Exclusion a Thing of the Past. The Roald Dahl Foundation, 2006. Breivik, Jan Kare. “Deaf Identities: Visible Culture, Hidden Dilemmas and Scattered Belonging.” In H.G. Sicakkan and Y.G. Lithman, eds. What Happens When a Society Is Diverse: Exploring Multidimensional Identities. Lewiston, New York: Edwin Mellen Press, 2006. 75-104. Carvel, John. “Demonstrators Rattle Scope.” The Guardian, Society section, 6 Oct. 2004: 4. Conlon, Caroline, and Jemina Napier. “Developing Auslan Educational Resources: A Process of Effective Translation of Children’s Books.” Deaf Worlds 20.2. (2004): 141-161. Corker, Mairian. Deaf and Disabled or Deafness Disabled. Buckingham: Open University Press, 1998. Crow, Liz. “Including All of Our Lives: Renewing the Social Model of Disability.” In Jenny Morris, ed. Encounters with Strangers: Feminism and Disability. Women’s Press, 1996. 206-227. Davis, John, and Nick Watson. “Countering Stereotypes of Disability: Disabled Children and Resistance.” In Mairian Corker and Tom Shakespeare, eds. Disability/Postmodernity: Embodying Disability Theory. London: Continuum, 2002. 159-174. Duncan, Kath, Gerard Goggin, and Christopher Newell. “Don’t Talk about Me… like I’m Not Here: Disability in Australian National Cinema.” Metro Magazine 146-147 (2005): 152-159. Garland Thomson, Rosemarie. “The Politics of Staring: Visual Rhetorics of Disability in Popular Photography.” In Sharon L. Snyder, Brenda Jo Bruggemann, and Rosemarie Garland Thomson, eds. Disability Studies: Enabling the Humanities. New York: MLAA, 2002. 56-75. Gauntlett, David. “Using Creative Visual Research Methods to Understand Media Audiences.” MedienPädagogik 4.1 (2005). Haller, Beth, Bruce Dorries, and Jessica Rahn. “Media Labeling versus the US Disability Community Identity: A Study of Shifting Cultural Language.” In Disability & Society 21.1 (2006): 61-75. Hevey, David. The Creatures Time Forgot: Photography and Disability Imagery. London: Routledge, 1992. Kleege, Georgia. “Disabled Students Come Out: Questions without Answers.” In Sharon Snyder, Brenda Jo Brueggeman, and Rosemarie Garland Thomson, eds. Disability Studies: Enabling the Humanities. New York: Modern Language Association of America, 2002. 308-316. Ladd, Paddy. Understanding Deaf Culture: In Search of Deafhood. Clevedon: Multilingual Matters, 2003. Longmore, Paul. “Conspicuous Contribution and American Cultural Dilemma: Telethon Rituals of Cleansing and Renewal.” In David T. Mitchell and Sharon L. Snyder, eds. The Body and Physical Difference: Discourses of Disability. Ann Arbor: The University of Michigan Press, 1997. 134-158. Lowy, Adrienne. “Dyslexia: A Different Approach to Learning?” JMU Learning and Teaching Press 2.2 (2002). Matthews, Nicole. “Contesting Representations of Disabled Children in Picture Books: Visibility, the Body and the Social Model of Disability.” Children’s Geographies (forthcoming). Meekosha, Helen. “Drifting Down the Gulf Stream: Navigating the Cultures of Disability Studies.” Disability & Society 19.7 (2004): 720-733. O’Hara, Mary. “Closure Motion.” The Guardian, Society section, 30 March 2005: 10. Oliver, Mike. The politics of Disablement. London: Macmillan, 1990. ———. “If I Had a Hammer: The Social Model in Action.” In John Swain, Sally French, Colin Barnes, and Carol Thomas, eds. Disabling Barriers – Enabling Environments. London: Sage, 2002. 7-12. Olney, Marjorie F., and Karin F. Brockelman. "Out of the Disability Closet: Strategic Use of Perception Management by Select University Students with Disabilities." Disability & Society 18.1 (2003): 35-50. Parris, Matthew. “Choose Your Words Carefully If You Want to Be Misunderstood.” The Times 10 July 2004. Purves, Libby. “Handicap, What Handicap?” The Times 9 Aug. 2003. 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This essay aims to elucidate issues related to the origin, definition and contributions of number sense to mathematical learning. We discuss the controversies involved in the origin and conceptualization of the construct, as well as the understanding of number sense that characterizes this work. We present studies that highlight the relevant role that number sense plays in the construction of initial mathematics and the relation that this construct has evidenced in children’s later mathematical performance. These findings are then related to educational actions developed by researchers in the field, showing the effectiveness of the investment in developing mathematical interventions. In conclusion, it is evidenced the controversy that characterizes the concept of number sense, which reflects the need for more research in this field. A strong predictive relationship between the construct and later mathematical knowledge is also highlighted, which has led to the realization of intervention studies in this field. Such studies have shown encouraging results for kindergarten and elementary school students who have difficulties in learning mathematics.ResumoEste ensaio tem como objetivo elucidar questões relativas à origem, definição e contribuições do senso numérico para a aprendizagem matemática. Abordam-se as controvérsias envolvidas na origem e conceituação do constructo, assim como a compreensão de senso numérico que caracteriza este trabalho. São apresentados estudos que destacam o papel relevante que o senso numérico desempenha para a construção da matemática inicial e a relação que este constructo tem evidenciado com o desempenho matemático posterior das crianças. Após, relaciona-se o que foi exposto às ações educacionais desenvolvidas por pesquisadores da área, mostrando a efetividade do investimento no desenvolvimento de intervenções matemáticas. Em conclusão, fica evidenciada a controvérsia que caracteriza a conceituação de senso numérico, o que reflete a necessidade e relevância de mais pesquisa nesta área. É destacada também a forte relação preditiva entre o constructo e o conhecimento matemático posterior, o que tem impulsionado a realização de estudos de intervenção neste campo, com resultados animadores, para alunos da Educação Infantil e dos anos iniciais do Ensino Fundamental que apresentam dificuldades de aprendizagem na matemática.ResumenEste ensayo tiene como objetivo dilucidar cuestiones relacionadas con el origen, la definición y las contribuciones del sentido numérico al aprendizaje matemático. Discutimos las controversias involucradas en el origen y la conceptualización del constructo, así como la comprensión del sentido numérico que caracteriza este trabajo. Presentamos estudios que destacan el papel relevante que juega el sentido numérico en la construcción de las matemáticas iniciales y la relación que este constructo ha evidenciado en el rendimiento matemático posterior de los niños. Estos hallazgos se relacionan luego con acciones educativas desarrolladas por investigadores en este campo, evidenciando la efectividad de los esfuerzos en el desarrollo de intervenciones matemáticas. En conclusión, queda evidenciada la controversia que caracteriza el concepto de sentido numérico, lo que refleja la necesidad de más investigación en este campo. También se destaca una fuerte relación predictiva entre este constructo y el conocimiento matemático posterior, lo que ha llevado a la realización de estudios de intervención en esta área. 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Who Are Carers? A carer is any individual who provides unpaid care and support to a family member or friend who has a disability, mental illness, drug and/or alcohol dependency, chronic condition, terminal illness or who is frail. Carers come from all walks of life, cultural backgrounds and age groups. For many, caring is a 24 hour-a-day job with emotional, physical and financial impacts, with implications for their participation in employment, education and community activities. Carers exist in all communities, including amongst Aboriginal communities, those of culturally and linguistically diverse backgrounds, amongst Gay, Lesbian, Bisexual, Transgender, Intersex communities, and throughout metropolitan, regional and rural areas (Carers NSW). These broad characteristics mean that caring occurs across a wide variety of situations and care responsibilities can impact an even wider group of people. The ubiquitous nature of informal care warrants its consideration as a major social issue, as well as the potential impacts that these roles can have on carers in both short and long term contexts. Caring for a loved one is often an unseen component of people’s domestic lives. As will be outlined below, the potentially burdensome nature of care can have negative influences on carers’ wellbeing. As such, factors that can enhance the resilience of carers in the face of such adversity have been widely investigated. This being said, individual differences exist in carers’ responses to their caring responsibilities. The caring experience can therefore be argued to exist on a continuum, from the adversity in relation to stressful challenges through to prosperity in light of their caring responsibilities. By considering the experience of care as existing along this continuum, the place of resilience within people’s domestic spaces can be viewed as a mechanism towards identifying and developing supportive practices. Negative Impacts of Care A significant body of research has identified potential negative impacts of caring. Many of the most commonly cited outcomes relate to negative effects on mental health and/or psychological functioning, including stress, anxiety and depression (e.g. Baker et al.; Barlow, Cullen-Powell and Cheshire; Cheshire, Barlow and Powell; Dunn et al.; Gallagher et al.; Hastings et al.; Lach et al.; Singer; Sörensen et al.; Vitaliano, Zhang and Scanlan; Whittingham et al.; Yamada et al.). These feelings can be exacerbated when caring responsibilities become relentlessly time consuming, as demonstrated by this comment from a carer of a person with dementia: “I can’t get away from it” (O'Dwyer, Moyle and van Wyk 758). Similarly, emotional responses such as sorrow, grief, anger, frustration, and guilt can result from caring for a loved one (Heiman; Whittingham et al.). Negative emotional responses are not necessarily a direct result of caring responsibilities as such, but an understanding of the challenges faced by the person requiring their care. The following quote from the carer of a child with autism exemplifies the experience of sorrow: “It was actually the worst day of our lives, that was the day we came to terms with the fact that we had this problem” (Midence and O’Neill 280). Alongside these psychological and emotional outcomes, physical health may also be negatively impacted due to certain demands of the caring role (Lach et al.; Sörensen et al.; Vitaliano, Zhang and Scanlan). Outcomes such as these are likely to vary across individual caring circumstances, dictated by variables such as the specific tasks required of the carer, and individual personality characteristics of both the carer and the person for whom they care. Nevertheless, an awareness of these potential outcomes is particularly important when considering the place of resilience in the domestic space of individuals caring for a loved one. This conceptualisation of caring as being a burdensome task reflects many publicly held perceptions. If caring is widely viewed as compromising carers’ wellbeing, then there is likely to be an increased likelihood of carers viewing themselves as victims. This is particularly true amongst children and adolescents with caring responsibilities, since young people are most susceptible to having their personal identities shaped by others’ perceptions (Andreouli, Skovdal and Campbell). Resilience in Caring Adversity Despite the widely acknowledged potential for caring to have negative consequences for carers, it must be noted that the occurrence of these outcomes are not inevitable. In fact, much of the research that has identified increased stress amongst carers also finds that the majority cope well with the demands of their role (Barnett et al.). These carers have been considered by many researchers to demonstrate resilience (e.g. Barnett et al.; O'Dwyer, Moyle and van Wyk). The ability to respond positively despite exposure to risk or adversity is a key feature of most definitions of resilience (Luthar, Cicchetti and Becker; Masten and Obradović; Zauszniewski, Bekhet and Suresky). Resilience in this context can thus be defined as a psychological process that facilitates healthy functioning in response to intense life stressors (Johnson et al.). Since caring experiences are likely to continue for an extended period of time, resilience is likely to be necessary on an ongoing basis, rather than in response to a single traumatic event. A resilient carer is therefore one who is able to effectively and adaptively cope with extenuating pressures of caring for a loved one. This involves the presence of personal, social, familial, or institutional protective factors that enable carers to resist stress (Kaplan et al.). For example, support from health professionals, family, or community has been found to effectively support carers in coping with their role (Bekhet, Johnson and Zauszniewski; Gardiner and Iarocci; Heiman; Whittingham et al.). The benefit of support networks in assisting carers to cope in their role is widely reported in the associated research, reinforced by many examples such as the following from a carer of a person with dementia: “It’s a social thing, like, I’ve got friends on there… I find that is my escape” (O'Dwyer, Moyle and van Wyk 758). At an individual level, those who demonstrate resilient in the face of adversity demonstrate optimistic or hopeful outlooks (Ekas, Lickenbrock and Whitman; Lloyd and Hastings; Whittingham et al.), while simultaneously holding realistic expectations of the future (Rasmussen et al.; Wrosch, Miller, et al.; Wrosch, Scheier, et al.). Such attitudes are particularly significant amongst people caring for family members or friends with disabilities or illnesses. The following attitude held by a carer of a child with cerebral palsy exemplifies this optimistic outlook: “I look at the glass half full and say that “well, it’s only his walking, everything else is fine”. “So, get over [it] and deal with it” (Whittingham et al. 1451). Those who cognitively process information, rather than reacting in a highly emotion way have also been found to cope better (Bekhet, Johnson and Zauszniewski; Heiman; Monin et al.; Pennebaker, Mayne and Francis), as have those with a greater sense of self-efficacy or an internal locus of control (Bekhet, Johnson and Zauszniewski; Kuhn and Carter). However effective these coping strategies prove to be, this is unlikely to provide the full picture of caring experiences, or the place of resilience within that space. Associating resilience with adversity presumes a consensus on what constitutes adversity. Taking the typical approach to investigating resilience amongst carers risks making undue assumptions of the nature of individual carers’ experiences – namely, that caring equates to adversity. The following paragraphs will outline how this is not necessarily the case. And furthermore, that the concept of resilience still has a place in considering informal caring, regardless of whether adversity is considered to be present. Benefits of Care While a great deal of evidence suggests that caring for a loved one can be a stressful experience, research has also demonstrated the existence of positive impacts of care. In many instances, carers not only cope, but also thrive in their caring roles (Turnbull et al.). Elements such as positive relationships within caring relationships can both challenge and strengthen individuals – factors that only exist due to the specific nature of the individual caring role (Bayat; Heiman). Such positive elements of the caring experience have been reflected in the literature, illustrated by quotes such as: “In some sense, this makes our family closer” (Bayat 709). Rather than viewing carers from a perspective of victimisation (which is particularly prominent in relation to children and young people with caring responsibilities), recognising the prevalence of positive wellbeing within this population provides a more nuanced understanding of the lived experiences of all carers (Aldridge). Reported benefits of caring tend to revolve around personal relationships, particularly in reference to parents caring for their children with special needs. Reflective of the parental relationship, carers of children with disabilities or chronic illnesses generally report feelings of love, joy, optimism, strength, enjoyment, and satisfaction with their role (Barnett et al.; Heiman). The views of such carers do not reflect an attitude of coping with adversity, but rather a perspective that considers their children to be positive contributors to carers’ quality of life and the wellbeing of the wider family (King et al.). This point of view suggests an additional dimension to resilience; in particular, that resilience in the relative absence of risk factors, can cause carers to flourish within their caring role and relationships. In addition to benefits in relationships, carers may also prosper through their own personal growth and development in the course of their caring (Knight). This includes factors such as the development of life skills, maturity, purpose, social skills, a sense of responsibility, and recognition – particularly amongst young people in caring roles (Earley, Cushway and Cassidy; Early, Cushway and Cassidy; Jurkovic, Thirkield and Morrell; Skovdal and Andreouli; Stein, Rotheram-Borus and Lester; Tompkins). Recognition of the potential personal benefits of caring for a loved one is not intended to suggest that the view of carers coping with adversity is universally applicable. While it is likely that individual caring situations will have an impact on the extent to which a carer faces adversity (e.g. intensity of caring responsibilities, severity of loved one’s impairment, etc.), it is important to recognise the benefits that carers can experience alongside any challenges they may face. Circumstances that appear adversarial may not be thought of as such by those within that context. Defining resilience as an ability to cope with adversity therefore will not apply to such contexts. Rather, the concept of resilience needs to incorporate those who not only cope, but also prosper. Carers who do not perceive their role as burdensome, but identify positive outcomes, can therefore be said to demonstrate resilience though contextually different from those coping with adversity. This is not to suggest that resilience is the sole contributing factor in terms of prospering in the caring role. We must also consider individual circumstances and nuances differ between carers, those they care for, interpersonal relationships, and wider caring situations. Continuum of Care Awareness of the range of impacts that caring can have on carers leads to a recognition of the broad spectrum of experience that this role entails. Not only do caring experiences exhibit large variations in terms of practical issues (such as functional capacities, or type and severity of illness, disability, or condition), they include carers’ diverse personal responses to caring responsibilities. These responses can reflect either positive or negative dimensions, or a combination of both (Faso, Neal-Beevers and Carlson). In this way, caring experiences can be conceptualised as existing along a continuum. At one end of the spectrum, experiences align with the traditional view of caring as a struggle with and over adversity. More specifically, carers experience burdens as a result of their additional caring responsibilities, with negative outcomes likely to occur. At the other end of the spectrum, however, carers prosper in the role, experiencing significant personal benefits that would not have been possible without the caring role. This continuum makes a case for an expanded approach to stress and coping models of resilience to include positive concepts and a benefit-orientated perspective (Cassidy and Giles). In contrast to research that has argued for a progression from stress and coping models to strengths-based approaches (e.g. Glidden, Billings and Jobe; Knight), the continuum of care acknowledges the benefits of each of these theoretical positions, and thus may prove more comprehensive in attempting to understand the everyday lived experiences of carers. The framework provided by a representation of a continuum allows for the individual differences in caring situations and carers’ personal responses to be acknowledged, as well as accounting for any changes in these circumstances. Further, the experience and benefits of resilience in different contextual spheres can be identified. The flexibility afforded by such an approach is particularly important in light of individual differences in the ways carers respond to their situations, their changing caring contexts, and their subsequent individual needs (Monin et al.; Walsh; Whittingham et al.). As the caring experience can be dynamic and fluctuate in both directions along the continuum, resilience may be seen as the mechanism by which such movement occurs. In line with stress and coping models, resilience can assist carers to cope with adversarial circumstances at that end of the continuum. Similarly, it may be argued that those who prosper in their caring role exhibit characteristics of resilience. In other words, it is resilience that enables carers to cope with adversity at one end of the continuum and also to prosper at the other. Furthermore, by supporting the development of resilient characteristics, carers may be assisted in shifting their experiences along the continuum, from adversity to prosperity. This view extends upon traditional approaches reported in the stress and coping literature by contending that caring experiences may progress beyond positions of coping with adversity, to a position where caring is not understood in terms of adversity at all, but rather in terms of benefits. The individual circumstances of any carer must be taken into consideration with this framework of resilience and the continuum of care. It is unrealistic to assume that all caring situations will allow for the possibility of reaching the end point of this continuum. Carers with particularly high demands in terms of time, resources, effort, or energy may not reach a stage where they no longer consider their caring role to involve any personal burden. However, the combination of a coping and strengths-based approach suggests that there is always the possibility of moving away from perceptions of adversity and further towards an attitude of prosperity. Implications for Supportive Practice From the perspective of this continuum of care, the protective factors and coping strategies identified in previous literature provide a valuable starting point for the facilitation of resilience amongst carers. Enhancing factors such as these can assist carers to move from situations of adversity towards experiences of prosperity (Benzies and Mychasiuk). Research has suggested that carers who are less analytical in their thinking and less optimistic about their personal situations may find particular benefit from support systems that assist them in redirecting their attention towards positive aspects of their daily lives, such as the benefits of caring outlined earlier (Monin et al.). The principle of focusing on positive experiences and reframing negative thoughts is thought to benefit carers across all levels of functioning and adaptive experience (Monin et al.). While those entrenched in more burdensome mindsets are likely to experience the greatest benefit from supportive interventions, there is still merit in providing similar supports to carers who do not appear to experience the similar experiences of burden, or demonstrate greater resilience or adaptation to their situation. The dynamic view of caring situations and resilience suggested by a continuum of care incorporates benefits of stress and coping models as well as strengths-based approaches. This has implications for supportive practice in that the focus is not on determining whether or not a carer is resilient, but identifying the ways in which they already are resilient (Simon, Murphy and Smith). For carers who experience their role through a lens of adversity, resilience may need to be purposefully fostered in order to better enable them to cope and develop through the ongoing stresses of their role. For carers at the other end of the spectrum, resilience is likely to take on a substantially different meaning. Under these circumstances, caring for a loved one is not considered a burdensome task; rather, the positive impact of the role is pre-eminent. This point of view suggests that carers are resilient, not only in terms of an ability to thrive despite adversity, but in prospering to the extent that adversity is not considered to exist. The attitudes and approaches of services, support networks, and governments towards carers should remain flexible enough to acknowledge the wide variety of caring circumstances that exist. The continuum of care provides a framework through which certain aspects of caring and variations in resilience can be interpreted, as well as the type of support required by individual carers. Furthermore, it must be noted that caring circumstances can change – either gradually or suddenly – with the extent to which carers experience adversity, coping or prosperity also changing. Any attempts to provide support to carers or acknowledge their resilience should demonstrate an awareness of the potential for such fluctuation. 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Apparently some people upon coming across [Down Syndrome dolls] were offended. […] Still, it’s curious, and telling, what gives offense. Was it the shock of seeing a doll not modeled on the normative form that caused such offense? Or the assumption that any representation of Down Syndrome must naturally intend ridicule? Either way, it would seem that we might benefit from an examination of such reactions—especially as they relate to instances of the idealisation of the human form that dolls […] represent. (Faulkner) IntroductionWhen Joanne Faulkner describes public criticism of dolls designed to look like they have Down Syndrome, she draws attention to the need for an examination of the way discourses of disability are communicated. She calls, in particular, for an interrogation of people’s reactions to the disruption of the idealised human form that most dolls adopt. The case of Down Syndrome dolls is fascinating, yet critical discussion of these dolls from a disability or cultural studies perspective is conspicuously lacking. To address this lack, this paper draws upon theories of the cultural construction of disability, beauty, and normalcy (Garland-Thompson, Kumari Campbell, Wendell), to explore the way ideas about disability are communicated and circulated. The dominant discourse of disability is medical, where people are diagnosed or identified as disabled if they meet certain criteria, or lists of physical impairments. These lists have a tendency to subsume the disparate qualities of disability (Garland-Thompson) and remove people considered disabled from the social and cultural world in which they live (Snyder and Mitchell 377). While Down Syndrome dolls, produced by Downi Creations and Helga’s European Speciality Toys (HEST) in the US and Europe respectively, are reflective of such lists, they also perform the cultural function of increasing the visibility of disability in society. In addition, the companies distributing these dolls state that they are striving for greater inclusion of people with Down Syndrome (Collins, Parks). However, the effect of the dominance of medicalised discourses of disability can be seen in the public reaction to these dolls. This paper seeks also to bring an interrogation of disability into dialogue with a critical analysis of the discursive function of lists.The paper begins with a consideration of lists as they have been used to define disability and organise knowledge within medicine, and the impact this has had on the position of disability within society. In order to differentiate itself from medical discourses, the emerging social model also relied on lists during the 1980s and 1990s. However, these lists also decontextualised disability by ignoring certain factors for political advantage. The social model, like medicine, tended to ignore the diversity of humanity it was apparently arguing for (Snyder and Mitchell 377). The focus then shifts to the image of Down Syndrome dolls and the ensuing negative interpretation of them focusing, in particular, on reader comments following a Mail Online (Fisher) article. Although the dolls were debated across the blogosphere on a number of disability, special needs parenting, and Down Syndrome specific blogs, people commenting on The Mail Online—a UK based conservative tabloid newspaper—offer useful insights into communication and meaning making around disability. People establish meanings about disability through communication (Hedlund 766). While cultural responses to disability are influenced by a number of paradigms of interpretation such as superstition, religion, and fear, this paper is concerned with the rejection of bodies that do not ascribe to cultural standards of beauty and seeks to explore this paradigm alongside and within the use of lists by the various models of disability. This paper interrogates the use of lists in the way meanings about disability are communicated through the medical diagnostic list, the Down Syndrome dolls, and reactions to them. Each list reduces the disparate qualities and experiences of disability, yet as a cultural artefact, these dolls go some way towards recognising the social and cultural world that medicalised discourses of disability ignore. Drawing on the use of lists within different frameworks of disability, this paper contrasts the individual, or medical, model of disability (that being disabled is a personal problem) with the social model (that exclusion due to disability is social oppression). Secondly, the paper compares the characteristics of Down Syndrome dolls with actual characteristics of Down Syndrome to conclude that these features aim to be a celebrated, not stigmatised, aspect of the doll. By reasserting alternative notions of the body, the dolls point towards a more diverse society where disability can be understood in relation to social oppression. However, these aims of celebration have not automatically translated to a more diverse understanding. This paper aims to complicate perceptions of disability beyond a rudimentary list of characteristics through a consideration of the negative public response to these dolls. These responses are an example of the cultural subjugation of disability.Lists and the Creation of Normative Cultural ValuesFor Robert Belknap, lists are the dominant way of “organizing data relevant to human functioning” (8). While lists are used in a number of ways and for a variety of purposes, Belknap divides lists into two categories—the practical and the literary. Practical lists store meanings, while literary lists create them (89). Belknap’s recognition of the importance of meaning making is particularly relevant to a cultural interrogation of disability. As Mitchell and Snyder comment:Disability’s representational “fate” is not so much dependant upon a tradition of negative portrayals as it is tethered to inciting the act of meaning-making itself. (6)Disability unites disparate groups of people whose only commonality is that they are considered “abnormal” (Garland-Thompson). Ableism—the beliefs, processes, and practices which produce the ideal body—is a cultural project in which normative values are created in an attempt to neutralise the fact that all bodies are out of control (Kumari Campbell). Medical models use diagnostic lists and criteria to remove bodies from their social and cultural context and enforce an unequal power dynamic (Snyder and Mitchell 377).By comparison, the social model of disability shifts the emphasis to situate disability in social and cultural practices (Goggin and Newell 36). Lists have also been integral to the formation of the social model of disability as theorists established binary oppositions between medical and social understandings of disability (Oliver 22). While these lists have no “essential meaning,” through discourse they shape human experience (Liggett). Lists bring disparate items together to structure meaning and organisation. According to Hedlund, insights into the experience of disability—which is neither wholly medical nor wholly social—can be found in the language we use to communicate ideas about disability (766). For example, while the recent production of children’s dolls designed to reflect a list of the physical features of Down Syndrome (Table 2) may have no inherent meaning, negative public reception reveals recognisable modes of understanding disability. Down Syndrome dolls are in stark contrast to dolls popularly available which assume a normative representation. For Blair and Shalmon (15), popular children’s toys communicate cultural standards of beauty. Naomi Wolf describes beauty as a socially constructed normative value used to disempower women in particular. The idealisation of the human form is an aspect of children’s toys that has been criticised for perpetuating a narrow conception of beauty (Levy 189). Disability is likewise subject to social construction and is part of a collective social reality beyond diagnostic lists (Hedlund 766).Organising Knowledge: The Social vs. Medical Model of DisabilityDisability has long been moored in medical cultures and institutions which emphasise a sterile ideal of the body based on a diagnosis of biological difference as deviance. For example, in 1866, John Langdon Down sought to provide a diagnostic classification system for people with, what would later come to be called (after him), Down Syndrome. He focused on physical features:The hair is […] of a brownish colour, straight and scanty. The face is flat and broad, and destitute of prominence. The cheeks are roundish, and extended laterally. The eyes are obliquely placed, and the internal canthi more than normally distant from one another. The palpebral fissure is very narrow. The forehead is wrinkled transversely from the constant assistance which the levatores palpebrarum derive from the occipito-frontalis muscle in the opening of the eyes. The lips are large and thick with transverse fissures. The tongue is long, thick, and is much roughened. The nose is small. The skin has a slight dirty yellowish tinge, and is deficient in elasticity, giving the appearance of being too large for the body. (Down)These features form what Belknap would describe as a “pragmatic” list (12). For Belknap, scientific classification, such as the description Langdon Down offers above, introduces precision and validation to the use of lists (167). The overt principle linking these disparate characteristics together is the normative body from which these features deviate. Medicalised discourses, such as Down’s list, have been linked with the institutionalisation of people with this condition and their exclusion from the broader community (Hickey-Moody 23). Such emphasis on criteria to proffer diagnosis removes and decontextualises bodies from the world in which they live (Snyder and Mitchell 370). This world may in fact be the disabling factor, rather than the person’s body. The social model emerged in direct opposition to medicalised definitions of disability as a number of activists with disabilities in the United Kingdom formed The Union of Physically Impaired Against Segregation (UPIAS) and concluded that people with disability are disabled not by their bodies but by a world structured to exclude their bodies (Finkelstein 13). By separating disability (socially created) from impairment (the body), disability is understood as society’s unwillingness to accommodate the needs of people with impairments. The British academic and disability activist Michael Oliver was central to the establishment of the social model of disability. Following the activities of the UPIAS, Oliver (re)defined disability as a “form of social oppression,” and created two lists (reproduced below) to distinguish between the social and individual (or medical) models of disability. By utilising the list form in this way, Oliver both provided a repository of information regarding the social model of disability and contextualised it in direct opposition to what he describes as the individual model. These lists present the social model as a coherent discipline, in an easy to understand format. As Belknap argues, the suggestion of order is a major tool of the list (98). Oliver’s list suggests a clear order to the emerging social model of disability—disability is a problem with society, not an individual. However, this list was problematic because it appeared to disregard impairment within the experience of disability. As the “impersonal became political” (Snyder and Mitchell 377), impairment became the unacknowledged ambiguity in the binary opposition the social model was attempting to create (Shakespeare 35). Nevertheless, Oliver’s lists successfully enforced a desired order to the social model of disability. The individual modelThe social modelPersonal tragedy theorySocial oppression theoryPersonal problemSocial problemIndividual treatmentSocial actionMedicalisationSelf helpProfessional dominanceIndividual and collective responsibilityExpertiseExperienceAdjustmentAffirmationIndividual identityCollective identityPrejudiceDiscriminationAttitudesBehaviourCareRightsControlChoicePolicyPoliticsIndividual adaptation Social changeTable 1 The Individual v Social Model of Disability (Oliver)The social model then went through a period of “lists,” especially when discussing media and culture. Positive versus negative portrayals of disability were identified and scholars listed strategies for the appropriate representation of disability (Barnes, Barnes Mercer and Shakespeare). The representations of impairment or the physical markers of disability were discouraged as the discipline concerned itself with establishing disability as a political struggle against a disabling social world. Oliver’s lists arrange certain “facts” about disability. Disability is framed as a social phenomenon where certain aspects are emphasised and others left out. While Oliver explains that these lists were intended to represent extreme ends of a continuum to illustrate the distinction between disability and impairment (33), these are not mutually exclusive categories (Shakespeare 35). Disability is not simply a list of physical features, nor is it a clear distinction between individual/medical and social models. By utilising lists, the social model reacts to and attempts to move beyond the particular ordering provided by the medical model, but remains tied to a system of classification that imposes order on human functioning. Critical analysis of the representation of disability must re-engage the body by moving beyond binaries and pragmatic lists. While lists organise data central to human functioning, systems of meaning shape the organisation of human experience. Down Syndrome dolls, explored in the next section, complicate the distinction between the medical and social models.Down Syndrome DollsThese dolls are based on composites of a number of children with Down Syndrome (Hareyan). Helga Parks, CEO of HEST, describes the dolls as a realistic representation of nine physical features of Down Syndrome. Likewise, Donna Moore of Downi Creations employed a designer to oversee the production of the dolls which boast 13 features of Down Syndrome (Velasquez). These features are listed in the table below. HEST Down Syndrome Dolls Downi CreationsSmall ears set low on head with a fold at the topSmall ears with a fold at the topEars set low on the headSmall mouthSmall mouthProtruding tongueSlightly protruding tongueShortened fingers Shortened fingersPinkie finger curves inwardAlmond shaped eyesAlmond-shaped eyesHorizontal crease in palm of handHorizontal crease in palm of handGap between first and second toeA gap between the first and second toesShortened toesFlattened back of headFlattened back of headFlattened bridge across nose Flattened bridge across noseOptional: An incision in the chest to indicate open-heart surgery Table 2: Down Syndrome Dolls (Parks, Velasquez) Achieving the physical features of Down Syndrome is significant because Parks and Moore wanted children with the condition to recognise themselves:When a child with Down’s syndrome [sic.] picks up a regular doll, he doesn’t see himself, he sees the world’s perception of “perfect.” Our society is so focused on bodily perfection. (Cresswell)Despite these motivations, studies show that children with Down Syndrome prefer to play with “typical dolls” that do not reflect the physical characteristics of Down Syndrome (Cafferty 49). According to Cafferty, it is possible that children prefer typical dolls because they are “more attractive” (49). Similar studies of diverse groups of children have shown that children prefer to play with dolls they perceive as fitting into social concepts of beauty (Abbasi). Deeply embedded cultural notions of beauty—which exclude disability (see Morris)—are communicated from childhood (Blair & Shalmon 15). Notions of bodily perfection dominate children’s toys and Western culture in general as Cresswell comments above. Many bodies, not just those deemed “disabled,” do not conform to these cultural standards. Cultural ideals of beauty and an idealisation of the human body according to increasingly narrow parameters are becoming conflated with conceptions of normality (Wendell 86). Recognition of disability as subject to cultural rejection allows us to see “beauty and normalcy [as] a series of practices and positions [taken] in order to avoid the stigmatization of ugliness and abnormality” (Garland-Thompson). The exaggerated features of the doll problematise the idea that people with disability should strive to appear as nondisabled as possible and in turn highlights that some people, such as those with Down Syndrome, cannot “pass” as nondisabled and must therefore navigate a life and community that is not welcoming. While lists of the features of Down Syndrome store associated medicalised meanings, the discussion of the dolls online (the medium through which they are sold) provides insight into the cultural interpretation of disability and the way meaning is made. The next section of the paper considers a selection of negative responses to the Down Syndrome dolls that followed an article published in Mail Online (Fisher). What Causes Offence? Prior to Down Syndrome dolls, the majority of “disability dolls” were constructed through their accessories rather than through the dolls’ physical form and features. Wheelchairs, white canes, guide dogs and harnesses, plastic walkers, leg braces, and hearing aids could be purchased for use with dolls. Down Syndrome dolls look different as the features of impairment are embedded in the dolls’ construction. While accessories have a more temporary feel about them, the permanence of the impairments attributed to the doll was problematic for some who felt it projected a negative image of disability. Listed below are several negative comments following an article published in Mail Online (Fisher):What a grim world we are living in. No longer are dollies for play, for make believe, or for fun. Now it all about self image and psychological “help.” We “disabled” know we are “disabled”—we don’t need a doll to remind us of that! Stop making everything PC; let children be children and play and laugh once again!I think it’s sick and patronising.Who on earth are those education “experts?” Has nobody told them that you don’t educate children by mirroring their defects/weaknesses/negative traits but by doing exactly the opposite, mirroring back the BEST in them?The Downs Syndrome doll looks like they took the physical traits and presented them in an exaggerated way to make them more noticeable. That doll does not look attractive to me at all. If someone has a child that WANTS such a doll, fine. I can’t really see how it would help many of them, it would be like a huge sign saying “You are different.”The terminology used (grim, sick, patronising, defect, weak, negative, unattractive, different) to describe disability in these posts is significant. These descriptions are ideological categories which disadvantage and devalue “bodies that do not conform to certain cultural standards” (Garland-Thompson). Implicit and explicit in all of these comments is the sense that disability and Downs Syndrome in particular is undesirable, unattractive even. When listed together, like Belknap’s literary lists, they are not random or isolated interpretations; they form part of a larger system of meaning making around disability.These responses are informed by the notion that in order to gain equality in society, people with disability must suppress their difference and focus instead on how they are really just like everybody else. However, this focus ignores barriers to inclusion, such as in the rejection of bodies that do not ascribe to cultural standards of beauty. An increasing visibility of impairment in popular culture such as children’s toys advances an understanding of disability as diversity through difference and not something inherently bad. ConclusionPeter Laudin of Pattycake Doll, a company which sells Black, Hispanic, Asian, and Disabled dolls, has found that children “love all dolls unconditionally whether it’s special needs or not” (Lee Adam). He suggests that the majority of the negative responses to the Down Syndrome dolls stem from prejudice (Lee Adam). Dolls popularly available idealise the human form and assume a normative representation. While this has been criticised for communicating damaging standards of beauty from childhood (Levy, Blair and Shalmon), critiques about disability are not as widely understood. The social and medical models of disability focus attention on certain aspects of disability through lists; however, the reduction of diagnostic criteria in the form of a list (whether medical or social) decontextualises disability from the social and cultural world. Thus, the list form, while useful, has elided the disparate qualities of disability. As Belknap argues, lists “ask us to make them meaningful” (xv). Although the dolls discussed in this paper have been criticised for stereotyping and emphasising the difference between children with disability and those without, an inclusion of the physical features of Down Syndrome is consistent with recent moves within critical disability studies to re-engage the body (Shakespeare 35). As Faulkner notes in the epigraph to this paper, an examination of negative reactions to these dolls reveals much about the cultural position of people with disability. References Abbasi, Jennifer. “Why 6-Year Old Girls Want to be Sexy.” Live Science 16 July (2012). 30 Aug. 2012 ‹http://www.livescience.com/21609-self-sexualization-young-girls.html›. Barnes, Colin. Disabling Imagery and the Media: An Exploration of the Principles for Media Representations of Disabled People. 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IntroductionIn 2017, both the disability community and popular culture are using the term “inspiration porn” to describe one form of discrimination against people with disability. ABC’s Speechless, “a sitcom about a family with a son who has a disability, (has) tackled why it’s often offensive to call people with disabilities ‘inspirational’” (Wanshel). The reasons why inspiration porn is considered to be discriminatory have been widely articulated online by people with disability. Amongst them is Carly Findlay, a disabled writer, speaker, and appearance activist, who has written that:(inspiration porn) shows non-disabled people doing good deeds for disabled people—feeding them chips at McDonald’s—’serving us all lessons in kindness’: or taking them to the high school dance. These stories usually always go viral. The person with disability probably never gave their permission for the photo or story to be used in a meme or told to the media (Findlay).The definition and dynamics of inspiration porn as illustrated in this quote will be expanded upon in this paper’s critical analysis of captions. Here, the term captions is used to describe both writing found on memes and on Facebook posts (created by a “poster”), and the comments written below these posts (created by “commenters”). Facebook threads underneath posts about people with disability both “reflect and create” (Barnes, Mercer and Shakespeare 202) current societal attitudes towards disability. That is, such threads not only illustrate negative societal attitudes towards disability, but can also perpetuate these attitudes by increasing people’s exposure to them. This paper will focus on a specific case study of inspiration porn on Facebook—the crowning of a student with autism as prom king—and consider both the conflict of whether people’s kind words are patronising use of language, as well as the concerns of over-disclosure used in this thread.What Is Inspiration Porn?The genesis of the term inspiration porn is commonly attributed to the late Stella Young, a disabled woman who was an advocate for people with disability. However, the term has been traced to a blog post written in February 2012 (bear). Anecdotal evidence from Lisa Harris, a disability consultant and advocate with over 20 years’ disability education experience, suggests that the term was blogged about as far back as 2006 on Rachel Cohen-Rottenberg’s Webpage Disability and Representation (Harris). However, it was Young who popularised the term with her 2012 article We’re Not Here for Your Inspiration and 2014 TED Talk I’m Not Your Inspiration, Thank You Very Much. Young defined inspiration porn as “an image of a person with a disability, often a kid, doing something completely ordinary—like playing, or talking, or running, or drawing a picture, or hitting a tennis ball—carrying a caption like ‘your excuse is invalid’ or ‘before you quit, try’”.It is worth noting that the use of the word porn has been considered controversial in this context. Yet it can be argued that the perception of the person with disability having achieved something great gives the person without disability a hit of positive “inspired” emotion. In this way, such inspiration could be termed as porn as it serves the purpose of fulfilling the “pornographic” self-gratification of people without disability.The term inspiration porn has historically been used in disability studies in two ways. Firstly, it has been used to describe the “ableist gaze” (Davis), which is when a person with disability is ‘seen’ through the eyes of someone without disability. Indeed, just as the “male gaze” (Mulvey) is implicit in sexualised porn, so too the “ableist gaze” is implicit in inspiration porn. Secondly, it has been used to highlight the lack of power experienced by people with disability in cultural representation (Barnes, Mercer, and Shakespeare 201). This study is a good example of the latter—it is not uncommon for people with disability to be refuted when they speak out against the inherent discrimination found within captions of (intended) kindness on Facebook threads.Inspiration porn is also a form of “objectification” (Perry) of people with disability, and is based on stereotypes (Haller and Zhang 22) about disability held by people without disability. According to Dr. Paul Sinclair, a disability scholar with 15 years’ experience in disability education, objectification and stereotyping are essential factors to understanding inspiration porn as discrimination:when a person with disability engages in their daily life, it is possible that a person without disability sees them as inspirational by superimposing his/her stereotypical perception of, or understanding about, people with disability onto the identity of the person, as a human being.Such objectification and stereotyping of people with disability is evident across various media captioning. This is particularly so in social media which often includes memes of images with “inspiring” captions—such as the ones Young highlighted as clear examples of inspiration porn, which “feature the Hamilton quote (‘The only disability in life is a bad attitude’)”. Another example of this kind of captioning is found in news items such as the 2015 article Disabled Teen Crowned Homecoming Queen in Awesome Way as featured in the article USA Today (Saggio). This article described how a student not identified as having a disability gave her homecoming queen crown to a student with a disability and captioned the YouTube clip of these students with, “High school senior [Name] was hoping she’d be crowned homecoming queen. She has cerebral palsy and has never felt like she fit in at school. What happened during the crowning ceremony will warm your heart” (Saggio). The fact that the young woman was pleased with getting the crown does not mitigate the objectifying dynamics of inspiration porn present within this example. Captioning such as this both creates and reflects some of the existing attitudes—including charity and its appeal to emotionality—that perpetuate inspiration porn.Measuring Inspiration Porn with Sentiment AnalysisThe challenge for the researcher analysing Facebook threads is how to meaningfully interpret the captions’ numerous contexts. The methodology of this research used a quantitative approach to gather numerical data about selected Facebook captions. This paper discusses data gained from a sentiment analysis (Pang and Lee; Thelwall et al.; Driscoll) of these captions within the contexts of my own and other researchers’ analyses of inspiration porn, as well as the perspectives of people with disability.The sentiment analysis was conducted using SentiStrength, a software tool that extracts both positive and negative sentiment strengths “from short informal electronic text” (Thelwall et al., 2545), and ranks it “on a numerical scale” (Driscoll 3). Sentiment analysis and SentiStrength are useful, but not perfect, tools with which to analyse Facebook captions. For example, SentiStrength determines two scales: a positive emotion measurement scale ranging from +1 (neutral) to +5 (most positive), and a negative emotion measurement scale ranging from –1 (neutral) to –5 (most negative). It calculates the positive and negative scores concurrently rather than averaging them out in order to acknowledge that captions can and do express mixed emotion (Driscoll 5).News articles about people with disability attending proms and comparable events, such as the homecoming queen example described above, are often criticised by disability activists for perpetuating inspiration porn (Mort; Findlay; Brown). Based on this criticism, sentiment analysis was used in this research to measure the emotional strength of captions—particularly their possible use of patronising language—using the Autism Speaks Facebook post as a case study. The post featured an image of a high school student with autism who had been crowned prom king.The Autism Speaks Facebook page was set up to fund “research into the causes, prevention, treatments and a cure for autism; increas(e) awareness of autism spectrum disorders; and advocat(e) for the needs of individuals with autism and their families” (Autism Speaks). The location of the prom was not specified; however, Autism Speaks is based in New York. This particular Facebook page was selected for this study based on criticism that Autism Speaks receives from disability advocates. One of the major critiques is that “(its) advertising depends on offensive and outdated rhetoric of fear and pity, presenting the lives of autistic people as tragic burdens on our families and society” (Boycott Autism Speaks). Autism Speaks has also been described as a problematic example of an organisation that “dictate(s) how disability should be perceived and dealt with. Often without input of disabled people either in the design or implementation of these organizations” (crippledscholar). This article goes on to state that “charities always frame what they do as positive and helpful even when the people who are the intended recipients disagree.”The prom king post included a photo of a young man with autism after he was crowned. He was standing beside a woman who wasn’t identified. The photo, posted by the young man’s aunt on the Autism Speaks Facebook page, included a status update that read:My autistic nephew won PROM KING today! Just so you all know, having a disability doesn’t hold you back if you don’t let it! GO [NAME]. #AutismAwareness (Autism Speaks)The following caption from the comment thread of the same Facebook post is useful as an example of how SentiStrength works. The caption read:Tears of Joy! Thank you for posting!!! Wow this gives me hope for his and my son’s and everyone’s special wonderful child nephew and niece! Way cool!However, because SentiStrength does not always accurately detect and measure sarcasm or idiomatic language usage, ”Tears” (the only negatively interpreted word in this caption) has been scored as –4, while the overall positive sentiment was scored as 3. Therefore, the final SentiStrength score of this caption was 3, –4, thereby demonstrating both the utility and limitations of SentiStrength as a sentiment analysis tool. This is useful to understand when analysing the data it produces.When analysing the entire thread, the sentiment analysis results across 238 captions, showed that 2 was the average strength of positive emotion, and that –1.16 was the average strength of negative emotion. The following section will analyse how a specific caption chosen from the most positively-scored captions from these data indicates that inspiration porn is possibly evident within.Use of Language: Kind, or Patronising?This discussion analyses the use of language in one caption from this thread, focusing on the way it likely demonstrated the ableist gaze. The caption was the most positive one from these data as scored by SentiStrength (5, –1) and read, ”CONGRATULATIONS SWEETIE!!!”. While it is noted that basing this analysis primarily on one caption provides limited insight into the dynamics of inspiration porn, this analysis forms a basis from which to consider other “inspirational” Facebook posts about people with disability. As well as this caption, this discussion will also draw upon other examples mentioned in this paper—from the homecoming queen article in USA Today to another caption on the Autism Speaks thread—to illustrate the dynamics of inspiration porn.On the surface, this congratulatory caption seems like a kind thing to post. However, inspiration porn has been identified in this analysis based on the caption’s effusive use of punctuation coupled with use of capital letters and the word “sweetie”. The excitement depicted through use of multiple exclamation marks and capital letters implies that the commenter has a personal connection with the prom king, which is a possibility. However, this possibility becomes less feasible when the caption is considered within the context of other captions that display not dissimilar use of language, as well as some that also display intimate emojis, such as grin faces and love heart eyes. Further, when this use of language is used with any consistency across a thread and is not coupled with textual information that implies a personal connection between the commenter/s and the prom king, it could be interpreted as patronising, condescending and/or infantilising. In addition, “sweetie” is a term of endearment commonly used in conversation with a romantic partner, child, or someone the speaker/writer knows intimately. While, again, it is possible that these commenters knew the prom king intimately, a more likely possibility is that he was being written to by strangers, yet using language that implied he was close to them—which would then have the same patronising connotations as above. It can therefore be argued that there is a strong possibility that this heightened use of intimate and emotional language was chosen based on his autism diagnosis.The conclusion drawn above is based in part on contextual similarities between the Autism Speaks post and its associated thread, and the aforementioned homecoming queen news article. In the former, it is likely that the young prom king was congratulated effusively because of his autism diagnosis. Similarly, in the latter article, the young woman was crowned not because she was named homecoming queen, but because the crown was given to her because of her diagnosis of cerebral palsy. As both gestures appear to have been based on others’ perceptions of these individuals’ disabilities rather than on their achievements, they are both likely to be patronising gestures.Over-DisclosureIn addition to use of language, another noteworthy issue in the captions thread on the Autism Speaks Facebook page was that many of them were from parents disclosing the diagnosis of their child. One example of this was a post from a mother that read (in part):I’ll be over here worried & concerned with the other 9,999 & ½ things to deal with, keeping up with new therapies, current therapy, we came in progress from any past therapies, meltdowns, dietary restrictions, educational requirements, The joy and difficulties of not just learning a new word but actually retaining that word, sleep, being hit, keeping him from hitting himself, tags on clothes etc. etc. [sic] (Autism Speaks)The above commenter listed a number of disability-specific issues that she experienced while raising her son who has autism. The context for her caption was a discussion, unrelated to the original post, that had sparked underneath a sub-thread regarding whether the use of person-first language (“person with autism”) or identity-first language (“Autistic person”) was best when referring to someone with autism. The relationship between inspiration porn and this intimately negative post about someone with disability is that both types of post are examples of the “ableist gaze”: inspiration porn demonstrates an exaggerated sense of positivity based on someone’s disability, and this post demonstrates disregard for the privacy of the person being posted about—perhaps due to his disability. The ease with which this negative comparison (over-disclosure) can be made between ‘inspirational’ and ‘negative’ posts illustrates in part why inspiration porn is a form of discrimination—intentional or otherwise.Furthermore, some of the children who were disclosed about on the main thread were too young to be asked consent, and it is unclear whether those who were old enough had the capacity to provide informed consent. Research has found that online over-disclosure in general is a matter of concern.The specific practice of online over-disclosure from parents about their children—with or without disability—has been raised by Leaver (151), “what happens before young people have the agency, literacy or skills to take the reins of their own selves online? Parents, guardians, loved ones and others inevitably set the initial identity parameters for young people online.” Over-disclosure is therefore also an issue that concerns people with disability, and the people closest to them.There exists both anecdotal evidence and academic research regarding online over-disclosure about people with disability. The research states that when people with physical disability disclose online, they employ strategic approaches that involve the degree to which they disclose (Furr, Carreiro, and McArthur). This suggests that there are complex factors to consider around such disclosure. Also relevant is that the practice of over-disclosure about another person’s disability, regardless of whether that disclosure is made by a close family member, has been critiqued by people (Findlay; Stoltz) within the disability community: “would you publicly share this information about your other children, an aging parent, or yourself?” (Stoltz). Finally, the practice of disability over-disclosure by anyone other than the person themselves supports the understanding that inspiration porn is not about the “object” of inspiration; rather, it serves to give pleasure (and/or pain) to the objectifier.ConclusionInspiration porn via the ableist gaze is discriminatory because it focuses on a (societally) undesirable trait in a way that serves the “gazer” at the expense of the “gazed-at”. That is, people with disability are objectified and exploited in various ways that can initially appear to be positive to people without disability. For example, when someone with disability posts or is posted about on Facebook, a person without disability might then add a caption—possibly with good intentions—that serves as their “inspired” response to what it “must” be like to have a disability. It can be argued that such captions, whether on news articles or when framing social media images, therefore either reflect or create existing social inequalities—and possibly do both.In continuing to use the term inspiration porn to describe one form of discrimination against people with disability, both the disability community and popular culture are contributing to an important narrative that scholarship needs to continue to address. Indeed, the power imbalance that is celebrated within inspiration porn is in some ways more insidious than malicious discrimination against people with disability, because it is easier to mistake as kindness. The research sample presented in this paper supports the countless expressions of anecdotal evidence given by people with disability that this “kindness” is inspiration porn; a damaging expression of the ableist gaze.ReferencesAutism Speaks. Facebook 21 May 2017 <https://www.facebook.com/autismspeaks>.Barnes, Colin, Geof Mercer, and Tom Shakespeare. Exploring Disability. 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London: Verso, 1995.Driscoll, Beth. “Sentiment Analysis and the Literary Festival Audience.” Continuum 29.6 (2015): 861–873.Findlay, Carly. “Inspiration and Objectification of People with Disability – A Resource for Teachers and Parents.” Tune into Radio Carly 5 Feb. 2017. 21 May 2017 <http://carlyfindlay.blogspot.com.au/2017/02/inspiration-and-objectification-of.html>.Findlay, Carly. “When Parents Overshare Their Children’s Disability.” Sydney Morning Herald 23 July 2015. 21 May 2017 <http://www.smh.com.au/lifestyle/news-and-views/opinion/when-parents-overshare-their-childrens-disability-20150724-gijtw6.html>.Furr, June B., Alexis Carreiro, and John A. McArthur. “Strategic Approaches to Disability Disclosure on Social Media.” Disability & Society 31.10 (2016): 1353–1368.Haller, Beth, and Lingling Zhang. “Stigma or Empowerment? 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What began as a simple request for a book by one of my former students, at times, has not been so simple. The student, whom I refer to as Carla (name changed), hoped to read about characters similar to herself and her friends. As a teacher, I have often tried to hook my students on reading by presenting books with characters to which they can relate. These books can help increase their overall knowledge of the world, open their minds to multiple realities and variations of the human experience and provide scenarios in which they can live vicariously. Carla’s request was a bit more complicated than I had imagined. As a “Deaf” student who attended a state school for the Deaf and who viewed herself as a member of a linguistic cultural minority, she expected to read a book with characters who used American Sign Language and who participated as members within the Deaf Community. She did not want to read didactic books about deafness but wanted books with unpredictable plots and believable characters. Having graduated from a teacher-preparation program in Deaf Education, I had read numerous books about deafness. While memoirs and biographical selections had been relatively easy to acquire and were on my bookshelf, I had not once read any fictional books for adolescents that included a deaf character. (I refer to ‘Deaf’ as representing individuals who identify in a linguistic, cultural minority group. The term ‘deaf’ is used as a more generic term given to individuals with some degree of hearing loss. In other articles, ‘deaf’ has been used pejoratively or in connection to a view by those who believe one without the sense of hearing is inferior or lacking. I do not believe or wish to imply that. ) As a High School teacher with so many additional work responsibilities outside of classroom teaching, finding fictional books with deaf characters was somewhat of a challenge. Nevertheless, after some research I was able to recommend a book that I thought would be a good summer read. Nancy Butts’ Cheshire Moon (1992) is charming book about thirteen-year-old Miranda who is saddened by her cousin’s death and furious at her parents' insistence that she speak rather than sign. The plot turns slightly mystical when the teens begin having similar dreams under the “Cheshire moon”. Yet, the story is about Miranda, a deaf girl, who struggles with communication. Without her cousin, the only member of her family who was fluent in sign language, communication is difficult and embarrassing. Miranda feels isolated, alienated, and unsure of herself. Because of the main character’s age, the book was not the best recommendation for a high school student; however, when Carla finished Cheshire Moon, she asked for another book with Deaf characters. Problem & Purpose Historically, authors have used deafness as a literary device to relay various messages about the struggles of humankind and elicit sympathy from readers (Batson & Bergman; Bergman; Burns; Krentz; Panara; Taylor, "Deaf Characters" I, II, III; Schwartz; Wilding-Diaz). In recent decades, however, the general public’s awareness of and perhaps interest in deaf people has risen along with that of our increasingly multicultural world. Educational legislation has increased awareness of the deaf as has news coverage of Gallaudet University protests. In addition, Deaf people have benefited from advances in communicative technology, such as Video Relay (VRS) and instant messaging pagers, more coordinated interpreting services and an increase in awareness of American Sign Language. Authors are incorporating more deaf characters than they did in the past. However, this increase does not necessarily translate to an increase in understanding of the deaf, nor does it translate to the most accurate, respectably, well-rounded characterization of the deaf (Pajka-West, "Perceptions"). Acquiring fictional books that include deaf characters can be time-consuming and challenging for teachers and librarians. The research examining deaf characters in fiction is extremely limited (Burns; Guella; Krentz; Wilding-Diaz). The most recent articles predominately focus on children’s literature — specifically picture books (Bailes; Brittain). Despite decades of research affirming culturally authentic children’s literature and the merits of multicultural literature, a coexisting body of research reveals the lack of culturally authentic texts (Applebee; Campbell & Wirtenberg; Ernest; Larrick; Sherriff; Taxel). Moreover, children’s books with deaf characters are used as informational depictions of deaf individuals (Bockmiller, 1980). Readers of such resource books, typically parents, teachers and their students, gain information about deafness and individuals with “disabilities” (Bockmiller, 1980; Civiletto & Schirmer, 2000). If an important purpose for deaf characters in fiction is educational and informational, then there is a need for the characters to be presented as realistic models of deaf people. If not, the readers of such fiction gain inaccurate information about deafness including reinforced negative stereotypes, as can occur in any other literature portraying cultural minorities (Pajka-West, "Perceptions"). Similar to authors’ informational depictions, writers also reveal societal understanding of groups of people through their fiction (Banfield & Wilson; Panara; Rudman). Literature has often stigmatized minority culture individuals based upon race, ethnicity, disability, gender and/or sexual orientation. While readers might recognize the negative depictions and dismiss them as harmless stereotypes, these portrayals could become a part of the unconscious of members of our society. If books continually reinforce stereotypical depictions of deaf people, individuals belonging to the group might be typecast and discouraged into a limited way of being. As an educator, I want all of my students to have unlimited opportunities for the future, not disadvantaged by stereotypes. The Study For my doctoral dissertation, I examined six contemporary adolescent literature books with deaf characters. The research methodology for this study required book selection, reader sample selection, instrument creation, book analysis, questionnaire creation, and data analysis. My research questions included: 1) Are deaf characters being presented as culturally Deaf characters or as pathologically deaf and disabled; 2) Do these readers favor deaf authors over hearing ones? If so, why; and, 3) How do deaf and hearing adult readers perceive deaf characters in adolescent literature? The Sample The book sample included 102 possible books for the study ranging from adolescent to adult selections. I selected books that were recognized as suitable for middle school or high school readers based upon the reading and interest levels established by publishers. The books also had to include main characters who are deaf and deaf characters who are human. The books selected were all realistic fiction, available to the public, and published or reissued for publication within the last fifteen years. The six books that were selected included: Nick’s Secret by C. Blatchford; A Maiden’s Grave by J. Deaver; Of Sound Mind by J. Ferris; Deaf Child Crossing by M. Matlin; Apple Is My Sign by M. Riskind; and Finding Abby by V. Scott. For the first part of my study, I analyzed these texts using the Adolescent Literature Content Analysis Check-off Form (ALCAC) which includes both pathological and cultural perspective statements derived from Deaf Studies, Disability Studies and Queer Theory. The participant sample included adult readers who fit within three categories: those who identified as deaf, those who were familiar with or had been acquaintances with deaf individuals, and those who were unfamiliar having never associated with deaf individuals. Each participant completed a Reader-Response Survey which included ten main questions derived from Deaf Studies and Schwartz’ ‘Criteria for Analyzing Books about Deafness’. The survey included both dichotomous and open-ended questions. Research Questions & Methodology Are deaf characters being presented as culturally Deaf or as pathologically deaf and disabled? In previous articles, scholars have stated that most books with deaf characters include a pathological perspective; yet, few studies actually exist to conclude this assertion. In my study, I analyzed six books to determine whether they supported the cultural or the pathological perspective of deafness. The goal was not to exclusively label a text either/or but to highlight the distinct perspectives to illuminate a discussion regarding a deaf character. As before mentioned, the ALCAC instrument incorporates relevant theories and prior research findings in reference to the portrayals of deaf characters and was developed to specifically analyze adolescent literature with deaf characters. Despite the historical research regarding deaf characters and due to the increased awareness of deaf people and American Sign Language, my initial assumption was that the authors of the six adolescent books would present their deaf characters as more culturally ‘Deaf’. This was confirmed for the majority of the books. I believed that an outsider, such as a hearing writer, could carry out an adequate portrayal of a culture other than his own. In the past, scholars did not believe this was the case; however, the results from my study demonstrated that the majority of the hearing authors presented the cultural perspective model. Initially shocking, the majority of deaf authors incorporated the pathological perspective model. I offer three possible reasons why these deaf authors included more pathological perspective statements while the hearing authors include more cultural perspective statements: First, the deaf authors have grown up deaf and perhaps experienced more scenarios similar to those presented from the pathological perspective model. Even if the deaf authors live more culturally Deaf lifestyles today, authors include their experiences growing up in their writing. Second, there are less deaf characters in the books written by deaf authors and more characters and more character variety in the books written by the hearing authors. When there are fewer deaf characters interacting with other deaf characters, these characters tend to interact with more hearing characters who are less likely to be aware of the cultural perspective. And third, with decreased populations of culturally Deaf born to culturally Deaf individuals, it seems consistent that it may be more difficult to obtain a book from a Deaf of Deaf author. Similarly, if we consider the Deaf person’s first language is American Sign Language, Deaf authors may be spending more time composing stories and poetry in American Sign Language and less time focusing upon English. This possible lack of interest may make the number of ‘Deaf of Deaf’ authors, or culturally Deaf individuals raised by culturally Deaf parents, who pursue and are successful publishing a book in adolescent literature low. At least in adolescent literature, deaf characters, as many other minority group characters, are being included in texts to show young people our increasingly multicultural world. Adolescent literature readers can now become aware of a range of deaf characters, including characters who use American Sign Language, who attend residential schools for the Deaf, and even who have Deaf families. Do the readers favor deaf authors over hearing ones? A significant part of my research was based upon the perceptions of adult readers of adolescent literature with deaf characters. I selected participants from a criterion sampling and divided them into three groups: 1. Adults who had attended either a special program for the deaf or a residential school for the deaf, used American Sign Language, and identified themselves as deaf were considered for the deaf category of the study; 2. Adults who were friends, family members, co-workers or professionals in fields connected with individuals who identify themselves as deaf were considered for the familiar category of the study; and, 3. hearing adults who were not aware of the everyday experiences of deaf people and who had not taken a sign language class, worked with or lived with a deaf person were considered for the unfamiliar category of the study. Nine participants were selected for each group totaling 27 participants (one participant from each of the groups withdrew before completion, leaving eight participants from each of the groups to complete the study). To elicit the perspectives of the participants, I developed a Reader Response survey which was modeled after Schwartz’s ‘Criteria for Analyzing Books about Deafness’. I assumed that the participants from Deaf and Familiar groups would prefer the books written by the deaf authors while the unfamiliar participants would act more as a control group. This was not confirmed through the data. In fact, the Deaf participants along with the participants as a whole preferred the books written by the hearing authors as better describing their perceptions of realistic deaf people, for presenting deaf characters adequately and realistically, and for the hearing authors’ portrayals of deaf characters matching with their perceptions of deaf people. In general, the Deaf participants were more critical of the deaf authors while the familiar participants, although as a group preferred the books by the hearing authors, were more critical of the hearing authors. Participants throughout all three groups mentioned their preference for a spectrum of deaf characters. The books used in this study that were written by hearing authors included a variety of characters. For example, Riskind’s Apple Is My Sign includes numerous deaf students at a school for the deaf and the main character living within a deaf family; Deaver’s A Maiden’s Grave includes deaf characters from a variety of backgrounds attending a residential school for the deaf and only a few hearing characters; and Ferris’ Of Sound Mind includes two deaf families with two CODA or hearing teens. The books written by the deaf authors in this study include only a few deaf characters. For example, Matlin’s Deaf Child Crossing includes two deaf girls surrounded by hearing characters; Scott’s Finding Abby includes more minor deaf characters but readers learn about these characters from the hearing character’s perspective. For instance, the character Jared uses sign language and attends a residential school for the deaf but readers learn this information from his hearing mother talking about him, not from the deaf character’s words. Readers know that he communicates through sign language because we are told that he does; however, the only communication readers are shown is a wave from the child; and, Blatchford’s Nick’s Secret includes only one deaf character. With the fewer deaf characters it is nearly impossible for the various ways of being deaf to be included in the book. Thus, the preference for the books by the hearing authors is more likely connected to the preference for a variety of deaf people represented. How do readers perceive deaf characters? Participants commented on fourteen main and secondary characters. Their perceptions of these characters fall into six categories: the “normal” curious kid such as the characters Harry (Apple Is My Sign), Jeremy (Of Sound Mind) and Jared (Finding Abby); the egocentric spoiled brat such as Palma (Of Sound Mind) and Megan (Deaf Child Crossing); the advocate such as Harry’s mother (Apple Is My Sign) and Susan (A Maiden’s Grave); those dependent upon the majority culture such as Palma (Of Sound Mind) and Lizzie (Deaf Child Crossing); those isolated such as Melissa (Finding Abby), Ben (Of Sound Mind), Nick (Nick’s Secret) and Thomas (Of Sound Mind); and, those searching for their identities such as Melanie (A Maiden’s Grave) and Abby (Finding Abby). Overall, participants commented more frequently about the deaf characters in the books by the hearing authors (A Maiden’s Grave; Of Sound Mind; Apple Is My Sign) and made more positive comments about the culturally Deaf male characters, particularly Ben Roper, Jeremy and Thomas of Of Sound Mind, and Harry of Apple Is My Sign. Themes such as the characters being dependent and isolated from others did arise. For example, Palma in Of Sound Mind insists that her hearing son act as her personal interpreter so that she can avoid other hearing people. Examples to demonstrate the isolation some of the deaf characters experience include Nick of Nick’s Secret being the only deaf character in his story and Ben Roper of Of Sound Mind being the only deaf employee in his workplace. While these can certainly be read as negative situations the characters experience, isolation is a reality that resonates in some deaf people’s experiences. With communicative technology and more individuals fluent in American Sign Language, some deaf individuals may decide to associate more with individuals in the larger culture. One must interpret purposeful isolation such as Ben Roper’s (Of Sound Mind) case, working in a location that provides him with the best employment opportunities, differently than Melissa Black’s (Finding Abby) isolating feelings of being left out of family dinner discussions. Similarly, variations in characterization including the egocentric, spoiled brat and those searching for their identities are common themes in adolescent literature with or without deaf characters being included. Positive examples of deaf characters including the roles of the advocate such as Susan (A Maiden’s Grave) and Harry’s mother (Apple Is My Sign), along with descriptions of regular everyday deaf kids increases the varieties of deaf characters. As previously stated, my study included an analysis based on literary theory and prior research. At that time, unless the author explicitly told readers in a foreword or a letter to readers, I had no way of truly knowing why the deaf character was included and why the author made such decisions. This uncertainty of the author’s decisions changed for me in 2007 with the establishment of my educational blog. Beginning to Blog When I started my educational blog Deaf Characters in Adolescent Literature in February 2007, I did not plan to become a blogger nor did I have any plans for my blog. I simply opened a Blogger account and added a list of 106 books with deaf characters that was connected to my research. Once I started blogging on a regular basis, I discovered an active audience who not only read what I wrote but who truly cared about my research. Blogging had become a way for me to keep my research current; since my blog was about deaf characters in adolescent literature, it became an advocacy tool that called attention to authors and books that were not widely publicized; and, it enabled me to become part of a cyber community made up of other bloggers and readers. After a few months of blogging on a weekly basis, I began to feel a sense of obligation to research and post my findings. While continuing to post to my blog, I have acquired more information about my research topic and even received advance reader copies prior to the books’ publication dates. This enables me to discuss the most current books. It also enables my readers to learn about such books. My blog acts as free advertisement for the publishing companies and authors. I currently have 195 contemporary books with deaf characters and over 36 author and professional interviews. While the most rewarding aspect of blogging is connecting with readers, there have been some major highlights in the process. As I stated, I had no way of knowing why the deaf character was included in the books until I began interviewing the authors. I had hoped that the hearing authors of books with deaf characters would portray their characters realistically but I had not realized the authors’ personal connections to actual deaf people. For instance, Delia Ray, Singing Hands, wrote about a Deaf preacher and his family. Her book was based on her grandfather who was a Deaf preacher and leading pioneer in the Deaf Community. Ray is not the only hearing author who has a personal connection to deaf people. Other examples include: Jean Ferris, Of Sound Mind, who earned a degree in Speech Pathology and Audiology. Ferris’ book includes only two hearing characters, the majority are Deaf. All of her characters are also fluent in American Sign Language; Jodi Cutler Del Dottore, Rally Caps, who includes a deaf character named Luca who uses a cochlear implant. Luca is based on Cutler Del Dottore’s son, Jordan, who also has a cochlear implant; finally, Jacqueline Woodson, Feathers, grew up in a community that included deaf people who did not use sign language. As an adult, she met members of the Deaf Community and began learning American Sign Language herself. Woodson introduces readers to Sean who is attractive, funny, and intelligent. In my study, I noted that all of the deaf characters where not diverse based upon race, ethnicity, and socio-economic status (Pajka-West, "Perceptions"). Sean is the first Deaf American-African character in adolescent literature who uses sign language to communicate. Another main highlight is finding Deaf authors who do not receive the mainstream press that other authors might receive. For example, Ann Clare LeZotte, T4, introduces readers to main character Paula Becker, a thirteen year old deaf girl who uses sign language and lipreading to communicate. Through verse, we learn of Paula’s life in Germany during Hitler’s time as she goes into hiding since individuals with physical and mental disabilities were being executed under the orders of Hitler’s Tiergartenstrasse 4 (T4). One additional highlight is that I learn about insider tips and am then able to share this information with my blog readers. In one instance I began corresponding with Marvel Comic’s David Mack, the creator of Echo, a multilingual, biracial, Deaf comic book character who debuted in Daredevil and later The New Avengers. In comics, it is Marvel who owns the character; while Echo was created for Daredevil by Mack, she later appears in The New Avengers. In March 2008, discussion boards were buzzing since issue #39 would include original creator, Mack, among other artists. To make it less complicated for those who do not follow comics, the issue was about whether or not Echo had become a skrull, an alien who takes over the body of the character. This was frightening news since potentially Echo could become a hearing skrull. I just did not believe that Mack would let that happen. My students and I held numerous discussions about the implications of Marvel’s decisions and finally I sent Mack an email. While he could not reveal the details of the issue, he did assure me that my students and I would be pleased. I’m sure there was a collective sigh from readers once his email was published on the blog. Final Thoughts While there have been pejorative depictions of the deaf in literature, the portrayals of deaf characters in adolescent literature have become much more realistic in the last decade. Authors have personal connections with actual deaf individuals which lend to the descriptions of their deaf characters; they are conducting more detailed research to develop their deaf characters; and, they appear to be much more aware of the Deaf Community than they were in the past. A unique benefit of the genre is that authors of adolescent literature often give the impression of being more available to the readers of their books. Authors often participate in open dialogues with their fans through social networking sites or discussion boards on their own websites. After posting interviews with the authors on my blog, I refer readers to the author’s on site whether it through personal blogs, websites, Facebook or Twitter pages. While hearing authors’ portrayals now include a spectrum of deaf characters, we must encourage Deaf and Hard of Hearing writers to include more deaf characters in their works. Consider again my student Carla and her longing to find books with deaf characters. Deaf characters in fiction act as role models for young adults. A positive portrayal of deaf characters benefits deaf adolescents whether or not they see themselves as biologically deaf or culturally deaf. Only through on-going publishing, more realistic and positive representations of the deaf will occur. References Bailes, C.N. "Mandy: A Critical Look at the Portrayal of a Deaf Character in Children’s Literature." Multicultural Perspectives 4.4 (2002): 3-9. Batson, T. "The Deaf Person in Fiction: From Sainthood to Rorschach Blot." Interracial Books for Children Bulletin 11.1-2 (1980): 16-18. Batson, T., and E. Bergman. Angels and Outcasts: An Anthology of Deaf Characters in Literature. Washington, D.C.: Gallaudet University Press (1985). Bergman, E. "Literature, Fictional characters in." In J.V. Van Cleve (ed.), Gallaudet Encyclopedia of Deaf People & Deafness. Vol. 2. Washington, D.C.: McGraw Hill, 1987. 172-176. Brittain, I. 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