Reading disability in literature and in film

This is a review-article of two major studies in disability studies, one edited collection, The Problem Body: Projecting Disability on Film, edited by Sally Chivers and Nicole Markotić and one authored volume, Aesthetic Nervousness: Disability and the Crisis of Representation by Ato Quayson.peer-reviewe

Supprimer les obstacles à la reconnaissance égale pour les personnes ayant un handicap mental : n’être pas d’accord avec le statu quo

Article 12 of the Convention on the Rights of Persons with Disabilities challenges the misconception that persons with intellectual disability, among others, are not capable to take decisions for them- selves. This paper first considers the right to equal recognition before the law within the light of the General Comment on Article 12 issued by the Committee on the Rights of Persons with Disabilities which emphasises the need to move away completely from substitute decision-making and to promote supported decision- making. The importance of Article 12 within the context of the Convention as a whole is also considered, together with the limited extent to which supported decision-making has been implemented. The paper argues that, with the exception of some jurisdictions, substitute decision-making is still seen as the best way to respond to the support needs of people with intellectual disability. While there are plenty of examples of supported decision-making practices being used in the daily lives of people with intellectual disability, these remain the exception. Crucially, decisions made in this way are not legally valid. What is needed therefore is a recognition that different people can take decisions using different methods, with or without support, and for these methods to become legally recognised.L’article 12 de la Convention relative aux droits des personnes handicapées conteste l’idée fausse selon laquelle les personnes ayant un handicap mental, entre autres, ne sont pas capables de prendre des décisions pour elles-mêmes. Tout d’abord, cet article propose d’étudier le droit à une reconnaissance juridique égale dans le cadre de l’Observation générale sur l’article 12 publiée par le Comité des Droits des Personnes Handicapées. Celui-ci souligne la nécessité de renoncer aux dispositifs de décisions substitutives et de promouvoir des dispositifs d’aide à la décision. L’importance de l’article 12 dans le contexte de la Convention dans son ensemble est également analysée au regard de la mise en œuvre limitée des mesures d’aide à la décision. L’article montre que, à l’exception de certaines juridictions, la prise de décisions substitutives est toujours considérée comme la meilleure fac ̧on de répondre aux besoins de soutien des personnes ayant un handicap mental. Bien qu’il existe de nombreux exemples montrant que des pratiques d’aide à la décision sont utilisées dans la vie quotidienne des personnes ayant un handicap mental, ces pratiques restent l’exception. Fondamentalement, les décisions prises de cette manière ne sont pas juridiquement valables. Il apparaît donc néces- saire de reconnaître que différentes personnes peuvent prendre des décisions en utilisant différentes méthodes, avec ou sans soutien, de telle sorte que celles-ci deviennent légalement reconnues.peer-reviewe

‘Being friends means helping each other, making coffee for each other’ : reciprocity in the friendships of people with intellectual disability

Friendship is an issue of concern for many people with intellectual disability. The aim of the research presented in this paper is to understand how people with intellectual disability experience friendship and what friendship means for them. A focus group was held with seven people with intellectual disability, who are members of a self-advocacy group. An inductive thematic analysis approach was used to analyse the data. The people that the research participants identified as their friends were fellow self-advocates, family members, support workers and co-workers. They also identified behaviours and actions that foster friendship and those that undermine it. The analysis shows how the research participants identified as friendships those relationships which had an element of reciprocity, while linking a lack of reciprocity with the absence of friendship. It is very important for non-disabled people to understand the perspectives of people with intellectual disability they live and work with.peer-reviewe

From ‘for’ to ‘of’ : a typology of Maltese disability organisations

The main aim of this article is to adapt the Typology of Disability Organisations that Oliver devised, and subsequently developed further in 1990, to a different context, in this case the Maltese disability sector. The paper first traces the history of the disabled people’s movement and presents Oliver’s Typology, which makes a clear distinction between organisations for and of disabled persons. The article then highlights the main characteristics of the Maltese disability sector and develops the Typology of the organisations operating within that sector. It shows how it is non- disabled people that are mostly in control of disability organisations, and suggests ways in which there can be a stronger movement towards the development and strengthening of disabled people’s organisations. The article shows how Oliver’s Typology can be used flexibly and adapted to various contexts. It also shows how drawing up a Typology of Disability Organisations can shed light on the environment within which these organisations operate, identifying areas of strength and possible areas for growth.peer-reviewe

The cloak of incompetence : representations of people with intellectual disability in film

At the half-hour mark of Tropic Thunder, Robert Downey Jr’s character Kirk Lazarus teaches Ben Stiller’s Tugg Speedman a lesson about Hollywood and the Oscars. Lazarus and Speedman, both actors, discuss Speedman’s interpre- tation of a person with intellectual disability in one of his films: Simple Jack. Lazarus argues that Hollywood does not like portrayals of people with intellectual disability that are too realistic. Taking this approach leads to actors going home “empty-handed” on Oscar night, he tells Speedman. In his argument, the key part of which is reproduced below, Lazarus refers to four films: Forrest Gump, Rain Man, Being There, and I am Sam. The portrayals of people with intellectual disability and the depiction of their lives in these films, and to a lesser extent in Tropic Thunder itself, are the focus of this article.peer-reviewe

Encounters between disability studies and critical trauma studies : introduction

When setting up the premises for a dialogue between disability studies and critical trauma studies and embarking on editing this pilot issue on ‘encounters’ between the two disciplines, we necessarily welcomed interdisciplinary approaches, ranging across disability studies, trauma studies, literary and cultural studies, media studies, as well as many other disciplines in the humanities. The first step in introducing this issue to our readers will be to present the histories of both disability studies and trauma studies in order to see how they evolved and see why our proposal that they should meet half way or at least more often can be considered a valid opeer-reviewe

Disability and parenting : the experiences of four women with disability

Women with disability are said to experience double discrimination, and their role as mothers augments their experiences of disablement. This qualitative research explores the intertwining and complex factors that emerge from the narratives of four disabled mothers in a Maltese cultural context. Interviews were conducted with four mothers who have different impairments. The findings from the narratives are presented using a life course approach. In the analysis of the data, social factors were found to impinge on the experiences of mothers with disability to a greater extent than impairment-related factors. These social factors comprise the immediate support networks of each mother, as well as wider cultural factors pertaining to being a mother with disability in Malta. The responses of the four mothers to these factors the stigma and misconceptions about the inability of disabled women to be mothers while at the same time, particularly mothering.peer-reviewe

‘Nothing about us without us’ : disabled people determining their human rights through the UNCRPD

The human rights and fundamental freedoms of disabled persons are set out in the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD). This paper firstly focuses on the importance of the involvement of disabled people at all levels of decision-making. The second part of the paper identifies those aspects of the UNCRPD that reflect the direct involvement of disabled people. Finally, it considers how human rights bodies can best build on this specific aspect of the UNCRPD in order to realize the potential of the Convention as a determining factor in affirming disabled people rights in an effective and meaningful manner.peer-reviewe

Nothing about us without us : disabled people determining their human rights through the UNCRPD

The human rights and fundamental freedoms of disabled persons are set out in the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD). This paper firstly focuses on the importance of the involvement of disabled people at all levels of decision-making. The second part of the paper identifies those aspects of the UNCRPD that reflect the direct involvement of disabled people. Finally, it considers how human rights bodies can best build on this specific aspect of the UNCRPD in order to realize the potential of the Convention as a determining factor in affirming disabled people rights in an effective and meaningful manner.peer-reviewe

Constructing sexual identities : people with intellectual disability talking about sexuality

This paper presented research undertaken in collaboration with a self-advocacy group using inclusive research methods and puts forward the views of people with intellectual disability on the topics of sexuality and relationships. The paper presents the perceptions of sexuality of the people with intellectual disability and how these are influenced by social and cultural norms. Using Judith Butler’s concept of performativity, the analysis of the findings shows how some people with intellectual disability accept the sexual norms that are ascribed to them, while others resist them. The paper also shows how the inclusive research process itself enabled the people with intellectual disability who took part to articulate their acceptance or resistance of these norms.peer-reviewe