'My grandchild has a disability' : impact on grandparenting identity, roles and relationships

Being a grandparent is an important and valued role for many older adults, who often have strong views about the type of grandparent they will be and what they will teach their grandchild. When their grandchild has a disability, grandparents may have to significantly adjust their expectations and interactions. This research explores if and how having a grandchild with a disability influences grandparents’ sense of identity and enactment of the grandparent role. Using qualitative purposive sampling, semi-structured interviews were conducted with 22 grandparents of children with an intellectual and/or physical disability residing in Brisbane, Australia. A thematic analysis identified three key themes characterising grandparent’s views: formation of grandparenting identity, styles of grandparenting, and role enactment. The results highlight the critical role of grandparents when a child has a disability, illustrating that the grandparenting experience and role enactment may be universal with only the context and delivery varying.

(Dia)logics of difference disability, performance and spectatorship in Liz Crow's Resistance on the Plinth

In this article I examine how artists with disabilities use public-space performance to encourage passersby to reflect on the construction of public discourses about disability – and, therefore, the construction of publics that are potentially inclusive of people with disabilities. I concentrate on British storyteller, artist, filmmaker and activist Liz Crow's Resistance on the Plinth, one of four pieces Crow has produced over the past three years as part of the Resistance series, an examination of the Nazi regime's Aktion T4 programme, which resulted in the mass murder of a quarter of a million people with disabilities. Created in August 2009 as part of Antony Gormley's One & Other public art project, the piece featured Crow dressed in a Nazi uniform and seated in a wheelchair on the Fourth Plinth in London's Trafalgar Square. For Crow – who creates work in a British context where public debate about the eugenics of genetic testing, euthanasia and assisted suicide is prevalent in the media – the Nazi atrocity is still rich in confronting imagery, resonant and relevant in a contemporary context. In this article, I consider the challenges that Gormley's extremely public One & Other presented for professional artists like Crow, who are committed to intervening in public perceptions of identity, community and culture. I describe the structural choices Crow made to provoke debate about the cultural logics embodied in the image she presented, and analyse some of the spectatorial responses from online forums such as the One & Other website, Facebook and Twitter immediately following the event.

“That you would post such a thing implies that you are a despicable human being”: spectatorship, social media, & the struggle for meaning in disability performance

Artists with disabilities working in Live Art paradigms often present performances which replay the social attitudes they are subject to in daily life as guerilla theatre in public spaces – including online spaces. In doing so, these artists draw spectators’ attention to the way their responses to disabled people contribute to the social construction of disability. They provide different theatrical, architectural or technological devices to encourage spectators to articulate their response to themselves and others. But – the use of exaggeration, comedy and confrontation in these practices notwithstanding – their blurry boundaries mean some spectators experience confusion as to whether they are responding to real life or a representation of it. This results in conflicted responses which reveal as much about the politics of disability as the performances themselves. In this paper, I examine how these conflicted responses play out in online forums. I discuss diverse examples, from blog comments on Liz Crow’s Resistance on the Plinth on YouTube, to Aaron Williamson and Katherine Araneillo’s Disabled Avant-Garde clips on YouTube, to Ju Gosling’s Letter Writing Project on her website, to segments of UK Channel 4’s mock reality show Cast Offs on YouTube. I demonstrate how online forums become a place not just for recording memories of an original performance (which posters may not have seen), but for a new performance, which goes well beyond re-membering/remediating the original. I identify trends in the way experience, memory and meaningmaking play out in these performative forums – moving from clarification of the original act’s parameters, to claims of disgust, insult or offense, to counter-claims confirming the comic or political efficacy of the act, often linked disclosure of personal memory or experience of disability. I examine the way these encounters at the interstices of live and/or online performance, memory, technology and public/private history negotiate ideas about disability, and what they tell us about the ethics and efficacy of the specific modes of performance and spectatorship these artists with disabilities are invoking.

Ask : a health advocacy program for adolescents with an intellectual disability : a cluster randomised controlled trial

Background Adolescents with intellectual disability often have poor health and healthcare. This is partly as a consequence of poor communication and recall difficulties, and the possible loss of specialised paediatric services. Methods/Design A cluster randomised trial was conducted with adolescents with intellectual disability to investigate a health intervention package to enhance interactions among adolescents with intellectual disability, their parents/carers, and general practitioners (GPs). The trial took place in Queensland, Australia, between February 2007 and September 2010. The intervention package was designed to improve communication with health professionals and families’ organisation of health information, and to increase clinical activities beneficial to improved health outcomes. It consisted of the Comprehensive Health Assessment Program (CHAP), a one-off health check, and the Ask Health Diary, designed for on-going use. Participants were drawn from Special Education Schools and Special Education Units. The education component of the intervention was delivered as part of the school curriculum. Educators were surveyed at baseline and followed-up four months later. Carers were surveyed at baseline and after 26 months. Evidence of health promotion, disease prevention and case-finding activities were extracted from GPs clinical records. Qualitative interviews of educators occurred after completion of the educational component of the intervention and with adolescents and carers after the CHAP. Discussion Adolescents with intellectual disability have difficulty obtaining many health services and often find it difficult to become empowered to improve and protect their health. The health intervention package proposed may aid them by augmenting communication, improving documentation of health encounters, and improving access to, and quality of, GP care. Recruitment strategies to consider for future studies in this population include ensuring potential participants can identify themselves with the individuals used in promotional study material, making direct contact with their families at the start of the study, and closely monitoring the implementation of the educational intervention.

Existential place-making : the dialogical realms of design for dwelling with disability

The world of disability is often neglected or taken for granted in able-bodied society. Apart from the challenge that disability is a social construct (Linton, 1998, 2006; Longmore, 2003; Thompson, 1997) there is an impact on the people with disability that they either feel left out or they don’t belong in the larger community. The able-bodied community is also left with very little knowledge or no sensitivity towards people with disability. These internal whirlpools do not contribute to any community only to create larger gaps and higher differences between the groups of people. Peace (2010) claims that disability is something imposed on to a person on top of a physical impairment. Nord (2008) advocates that while environmental barriers and social attitudes are crucial aspects of a person’s experience, they can indeed disable a person. The study reported high-lights what is home for people with disability and their family members. The way the person with disability and family members without disability share the same home and nurture personal relationships with each other demands greater attention. This research sheds light on the intricate relationships that exists between the family members including person with disability and their built environment. These existential connections provide a holistic viewpoint and the glimpse into the lived experiences of homes for people with disability and their care-givers. Concepts of universal design or barrier free design have not been successful (Connell and Sanford, 1999) in revealing in-depth the nature of place-making for people with disability and their care-givers. Such studies fail to incorporate the holistic needs of individuals with disability and their family members in terms of their bodily, visceral, emotional, social, psycho-social, intuitive, spiritual and temporal needs, to name a few (Franz, Bitner, 2010). This paper reports on some preliminary findings on phenomena of dwelling for people with different kinds of disability and their care-givers sharing the same home from an interior design perspective.

Years lived with disability (YLDs) for 1160 sequelae of 289 diseases and injuries 1990–2010 : a systematic analysis for the Global Burden of Disease Study 2010

Background Non-fatal health outcomes from diseases and injuries are a crucial consideration in the promotion and monitoring of individual and population health. The Global Burden of Disease (GBD) studies done in 1990 and 2000 have been the only studies to quantify non-fatal health outcomes across an exhaustive set of disorders at the global and regional level. Neither effort quantified uncertainty in prevalence or years lived with disability (YLDs). Methods Of the 291 diseases and injuries in the GBD cause list, 289 cause disability. For 1160 sequelae of the 289 diseases and injuries, we undertook a systematic analysis of prevalence, incidence, remission, duration, and excess mortality. Sources included published studies, case notification, population-based cancer registries, other disease registries, antenatal clinic serosurveillance, hospital discharge data, ambulatory care data, household surveys, other surveys, and cohort studies. For most sequelae, we used a Bayesian meta-regression method, DisMod-MR, designed to address key limitations in descriptive epidemiological data, including missing data, inconsistency, and large methodological variation between data sources. For some disorders, we used natural history models, geospatial models, back-calculation models (models calculating incidence from population mortality rates and case fatality), or registration completeness models (models adjusting for incomplete registration with health-system access and other covariates). Disability weights for 220 unique health states were used to capture the severity of health loss. YLDs by cause at age, sex, country, and year levels were adjusted for comorbidity with simulation methods. We included uncertainty estimates at all stages of the analysis. Findings Global prevalence for all ages combined in 2010 across the 1160 sequelae ranged from fewer than one case per 1 million people to 350 000 cases per 1 million people. Prevalence and severity of health loss were weakly correlated (correlation coefficient −0·37). In 2010, there were 777 million YLDs from all causes, up from 583 million in 1990. The main contributors to global YLDs were mental and behavioural disorders, musculoskeletal disorders, and diabetes or endocrine diseases. The leading specific causes of YLDs were much the same in 2010 as they were in 1990: low back pain, major depressive disorder, iron-deficiency anaemia, neck pain, chronic obstructive pulmonary disease, anxiety disorders, migraine, diabetes, and falls. Age-specific prevalence of YLDs increased with age in all regions and has decreased slightly from 1990 to 2010. Regional patterns of the leading causes of YLDs were more similar compared with years of life lost due to premature mortality. Neglected tropical diseases, HIV/AIDS, tuberculosis, malaria, and anaemia were important causes of YLDs in sub-Saharan Africa. Interpretation Rates of YLDs per 100 000 people have remained largely constant over time but rise steadily with age. Population growth and ageing have increased YLD numbers and crude rates over the past two decades. Prevalences of the most common causes of YLDs, such as mental and behavioural disorders and musculoskeletal disorders, have not decreased. Health systems will need to address the needs of the rising numbers of individuals with a range of disorders that largely cause disability but not mortality. Quantification of the burden of non-fatal health outcomes will be crucial to understand how well health systems are responding to these challenges. Effective and affordable strategies to deal with this rising burden are an urgent priority for health systems in most parts of the world. Funding Bill & Melinda Gates Foundation.

Australia's disabling income support system : tracing the history of the Australian disability income support system 1908 to 2007 : disablism, citizenship and the basic income proposal

The present study examined the historical basis of the Australian disability income support system from 1908 to 2007. Although designed as a safety net for people with a disability, the disability income support system within Australia has been highly targeted. The original eligibility criteria of "permanently incapacitated for work", medical criteria and later "partially capacitated for work" potentially contained ideological inferences that permeated across the time period. This represents an important area for study given the potential consequence for disability income support to marginalise people with a disability. Social policy and disability policy theorists, including Saunders (2007, Social Policy Research Centre [SPRC]) and Gibilisco (2003) have provided valuable insight into some of the effects of disability policy and poverty. Yet while these theorists argued for some form of income support they did not propose a specific form of income security for further exploration. Few studies have undertaken a comprehensive review of the history of disability income support within the Australian context. This thesis sought to redress these gaps by examining disability income support policy within Australia. The research design consisted of an in-depth critical historical-comparative policy analysis methodology. The use of critical historical-comparative policy analysis allowed the researcher to trace the construction of disability within the Australian disability income support policy across four major historical epochs. A framework was developed specifically to guide analysis of the data. The critical discourse analysis method helped to understand the underlying ideological dimensions that led to the predominance of one particular approach over another. Given this, the research purpose of the study centred on: i. Tracing the history of the Australian disability income support system. ii. Examining the historical patterns and ideological assumptions over time. iii. Exploring the historical patterns and ideological assumptions underpinning an alternative model (Basic Income) and the extent to which each model promotes the social citizenship of people with a disability. The research commitment to a social-relational ontology and the quest for social change centred on the idea that "there has to be a better way" in the provision of disability income support. This theme of searching for an alternative reality in disability income support policy resonated throughout the thesis. This thesis found that the Australian disability income support system is disabling in nature and generates categories of disability on the basis of ableness. From the study, ableness became a condition for citizenship. This study acknowledged that, in reality, income support provision reflects only one aspect of the disabling nature of society which requires redressing. Although there are inherent tensions in any redistributive strategy, the Basic Income model potentially provides an alternative to the Australian disability income support system, given its grounding in social citizenship. The thesis findings have implications for academics, policy-makers and practitioners in terms of developing better ways to understand disability constructs in disability income support policy. The thesis also makes a contribution in terms of promoting income support policies based on the rights of all people, not just a few.

Preventing the selection of “deaf embryos” under the Human Fertilisation and Embryology Act 2008 : problematizing disability?

Section 14(4) of the Human Fertilisation and Embryology Act 2008 imposes – within the general licensing conditions listed in the Human Fertilisation and Embryology Act 1990 – a prohibition to prevent the selection and implantation of embryos for the purpose of creating a child who will be born with a “serious disability.” This article offers a perspective that demonstrates the problematic nature of the consultation, review, and legislative reform process surrounding s 14(4). The term “serious disability” is not defined within the legislation, but we highlight the fact that s 14(4) was passed with the case of selecting deaf children in mind. We consider some of the literature on the topic of disability and deafness, which, we think, casts some doubt on the view that deafness is a “serious disability.” The main position we advance is that the lack of serious engagement with alternative viewpoints during the legislative process was unsatisfactory. We argue that the contested nature of deafness necessitates a more robust consultation process and a clearer explanation and defence of the normative position that underpins s 14(4).

Gifted students with a reading disability : the impact of lived experience

Gifted students who have a reading disability have learning characteristics that set them apart from their peers. The ability to read impacts upon all areas of the formal curriculum in which print-based texts are common. Therefore, the full intellectual development of gifted students with a reading disability can be repressed because their access to learning opportunities is reduced. When the different learning needs caused by concomitant giftedness and reading disability are not met, it can have serious implications for both academic achievement and the social-emotional wellbeing of these students. In order to develop a deeper understanding of this vulnerable group of students, this study investigated the learning characteristics of gifted students with a reading disability. Furthermore, it investigated how the learning characteristics of these students impact upon their lived experiences. Since achievement and motivation have been shown to be closely linked to self-efficacy, self-efficacy theory underpinned the conceptual framework of the study. The study used a descriptive case study approach to document the lived experiences of gifted students with a reading disability. Nine participants aged between 11 and 18, who were formally identified as gifted with a reading disability, took part in the study. Data sources in the case study database included: cognitive assessments, such as WISC assessments, Stanford Binet 5, or the Raven's Standard Progressive Matrices; the WIAT II reading assessment; the Reader Self-Perception Scale; document reviews; parent and teacher checklists designed to gain information about the students' learning characteristics; and semi-structured interviews with students. The study showed that gifted students with a reading disability display a complex profile of learning strengths and weaknesses. As a result, they face a daily struggle of trying to reconcile the confusion of being able to complete some tasks to a high level, while struggling to read. The study sheds light on the myriad of issues faced by the students at school. It revealed that when the particular learning characteristics and needs of gifted students with a reading disability are recognised and met, these students can experience academic success, and avoid the serious social-emotional complications cited in previous studies. Indeed, rather than suffering from depression, disengagement from learning, and demotivation, these students were described as resilient, independent, determined, goal oriented and motivated to learn and persevere. Notably, the students in the study had developed effective coping strategies for dealing with the daily challenges they faced. These strategies are outlined in the thesis together with the advice students offered for helping other gifted students with a reading disability to succeed. Their advice is significant for all teachers who wish to nurture the potential of those students who face the challenge of being gifted with a reading disability, and for the parents of these students. This research advances knowledge pertaining to the theory of self-efficacy, and self-efficacy in reading specifically, by showing that although gifted students with a reading disability have low self-efficacy, the level is not the same for all aspects of reading. Furthermore, despite low self-efficacy in reading these students remained motivated. The study also enhances existing knowledge in the areas of gifted education and special education because it documents the lived experience of gifted students with a specific learning disability in reading from the students' perspectives. Based on a synthesis of the literature and research findings, an Inclusive Pathway Model is proposed that describes a framework to support gifted students with a reading disability so that they might achieve, and remain socially and emotionally well-adjusted. The study highlights the importance of clear identification protocols (such as the use of a range of assessment sources, discussions with students and parents, and an awareness of the characteristics of gifted students with a reading disability) and support mechanisms for assisting students (for example, differentiated reading instruction and the use of assistive technology).

The National Disability Insurance Scheme Handbook

"The National Disability Insurance Scheme (NDIS) was launched on 1 July 2013. The NDIS Act 2013 is an historic piece of legislation that is the foundation for a national scheme which will deliver meaningful change for people with disabilities across Australia. The NDIS seeks to support the independence and social and economic participation of people with a disability, mainly by funding the provision of reasonable and necessary supports, including early intervention supports. The NDIS establishes three main criteria for access to the scheme - age, residence and disability. The National Disability Insurance Scheme Handbook written by Bill Madden, Janine McIlwraith and Ruanne Brell examines the NDIS from the viewpoint of a person seeking to access the NDIS and those advising or assisting them. The three key criteria are examined, along with the powers of the NDIS Chief Executive Officer and the scope for review of adverse decisions. The important area of interplay between the NDIS and compensation entitlements is carefully scrutinised. This handbook provides scheme users, carers, lawyers and health practitioners with an easy to understand guide to this watershed legal development."--Publisher website

Recognition and moral progress : a case study about discourses on disability in the media

This article aims to discuss the notion of moral progress in the theory of recognition. It argues that Axel Honneth's program offers sophisticated theoretical guidance to observe and critically interpret emancipatory projects in contemporary politics based on ideas of individuality and social inclusiveness. Using a case study – the investigation, through frame analysis, of transformations in the portrayal of people with impairment as well as in public discourses on the issue of disability in major Brazilian news media from 1960 to 2008 – this article addresses three controversies: the notion of progress as a directional process; the problem of moral disagreement and conflict of interest in struggles for recognition; and the processes of social learning. By articulating empirically based arguments and Honneth's normative discussions, this study concludes that one can talk about moral progress without losing sight of value pluralism and conflict of interest.

Disability, public space performance & spectatorship : Unconscious performers

Why would disabled people want to re-engage, re-enact and re-envisage the everyday encounters in public spaces and places that cast them as ugly, strange, stare-worthy? In Disability, Public Space Performance and Spectatorship: Unconscious Performers, Bree Hadley examines the performance practices of disabled artists in the US, UK, Europe and Australasia who do exactly this. Operating in a live or performance art paradigm, artists like James Cunningham (Australia), Noemi Lakmaier (UK/Austria), Alison Jones (UK), Aaron Williamson (UK), Katherine Araniello (UK), Bill Shannon (US), Back to Back Theatre (Australia), Rita Marcalo (UK), Liz Crow (UK) and Mat Fraser (UK) all use installation and public space performance practices to re-stage their disabled identities in risky, guerilla-style works that remind passersby of their own complicity in the daily social drama of disability. In doing so, they draw spectators' attention to their own role in constructing Western concepts of disability. This book investigates the way each of us can become unconscious performers in a daily social drama that positions disability people as figures of tragedy, stigma or pity, and the aesthetics, politics and ethics of performance practices that intervene very directly in this drama. It constructs a framework for understanding the way spectators are positioned in these practices, and how they contribute to public sphere debates about disability today.

Ruptured relations : guerrilla theatre, time & Pranksterish disability performance practice

Guerrilla theatre tends, by its very definition, to pop up unpredictably – it interrupts what people might see as the proper or typical flow of time, place and space. The subversive tenor of such work means that questions about ‘what has happened’ tend to the decidedly less polite form of ‘WTF’ as passersby struggle to make sense of, and move on from, moments in which accustomed narratives of action and interaction no longer apply. In this paper I examine examples of guerrilla theatre by performers with disabilities in terms of these ruptures in time, and the way they prompt reflection, reconfigure relations, or recede into traditional relations again - focusing particularly on comedian Laurence Clark. Many performers with disabilities – Bill Shannon, Katherine Araniello, Aaron Williamson, Ju Gosling, and others – find guerrilla-style interventions in public places apposite to their aesthetic and political agendas. They prompt passersby to reflect on their relationship to people with disabilities. They can be recorded for later dissection and display, teaching people something about the way social performers, social spectators and society as a whole deal with disability. In this paper, as I unpack Clark's work, I note that the embarrassment that characterises these encounters can be a flag of an ethical process taking place for passersby. Caught between two moments in which time, roles and relationships suddenly fail to flow along the smooth routes of socially determined habits, passersbys’ frowns, gasps and giggles flag difficulties dealing with questions about their attitude to disabled people they do not now know how to answer. I consider the productivity, politics and performerly ethics of drawing passersby into such a process – a chaotic, challenging interstitial time in which a passersbys choices become fodder for public consumption – in such a wholly public way.

The importance of social support for students with intellectual disability : an intervention to promote mental health and well-being

Children and adolescents with intellectual disability have higher rates of mental health problems compared with there typically developing peers. Social support has been identified as an important protective factor for psychological well - being. In this paper we discuss the benefits of social support networks, and consider approaches for promoting children’s perceptions of the availability of social support. We describe an evidence-based intervention that has been specially adapted and implemented for students with intellectual disability in school settings. In a randomised controlled trial, the Aussie Optimism Resilience Skills Program was associated with improved perceptions of social support following a 10-week intervention. Educators need to be aware of the increased vulnerability of students with intellectual disability to the development mental health problems and the proactive ways in which they can promote psychological well - being within their classrooms.

Promoting resilience in children with intellectual disability : a randomized controlled trial in Australian schools

Children with intellectual disability are more vulnerable to adverse developmental outcomes because of the lifelong risks associated with cognitive impairment. Difficulties with learning and adaptive behaviour inevitably produce considerable personal, social and economic disadvantage. Of concern is consistent evidence that psychiatric disorders affect a substantial proportion of people with intellectual disability. The estimated prevalence rate of between 35 and 49 % is three times that found in the general population (Wallander, Dekker, & Koot, 2006). Until recently, mental illness has been relatively neglected for people with intellectual disability, especially in relation to prevention or early detection (Kolaitis, 2008) and most research to date has been descriptive rather than focused on intervention (Bouras, 2013). Yet a considerable body of evidence demonstrates that efficacious interventions do exist for preventing psychopathology and enhancing resilience in typically developing children and adolescents (see Mallin, Walker, & Levin, 2013 for a review). In order to prevent the high comorbidity of intellectual disability and psychopathology, there is a compelling need for evidence-based practices that promote the resilience of individuals with intellectual disability (Matson, Terlonge, & Minshawi, 2008). In this chapter, we describe a randomized controlled trial of an intervention that was designed to enhance the resilience of a group of children with mild intellectual disability as they prepared to make the transition to high school. We report results from our evaluation of this intervention, and reflect on the difficulties of providing successful interventions for children whose lives are complicated not only by intellectual disability, but also by a range of contextual disadvantages.