Improving research about us,with us: a draft framework for inclusive autism research

It is both epistemologically as well as ethically problematic if the autistic voice is not heard in relation to social scientific research seeking to further develop knowledge of autism. Ever since autism first emerged, it has remained medicalised and almost exclusively the preserve of non-autistic researchers. More recently, autistic individuals have begun to contribute to autism research. However, the vast majority of research in autism is still undertaken on autistic people, rather than with them, and is often not concerned with improving the day-to-day lives of people with autism. We discuss the concepts of participatory research and emancipatory research before presenting a draft framework for what we regard as truly inclusive research in autism. Our proposals are firmly based on ideas developed by the members of a university-based group of autistic adults (the Asperger’s Consultation Group) as well as the knowledge and experience of the other contributors.     

The emancipation of disability studies in Portugal

Despite the interest of the social sciences in issues of exclusion and inequality, the question of disability, as a key issue of reflection, remains absent from many academic areas. The emergence of disability studies owes much to contexts in which the activism of disabled people has revealed the structural conditions that oppress and neglect experiences of disability. Bearing in mind the specific features of the Portuguese socio-political environment, two lines of inquiry are developed in this text. Firstly, what are the challenges faced by Portuguese academics in making disability a central issue, enabling it to confront the silencing of the voices and experiences of disabled people in society? Secondly, how important is it for research to engage with an ethical and political paradigm that supports the rights of disabled people?     

Is it possible to create a politically engaged,contextual psychology of disability?

Until recently disability studies has ignored questions regarding the psychological nature of oppression. Proponents of the social model have viewed such concerns as diversionary, diluting their emphasis on material and economic barriers to inclusion. This paper argues that the discipline’s role of reflecting and interrogating disablism will remain incomplete and lacking in transformative power without undertaking a psychological conceptualisation of disabled personhood. Some prior attempts at elaborating the social model to include the psychological realm have been presented; these are critiqued, and argued to lack truly psychological conceptualisation. Preliminary ideas regarding a proposed psychology of disablism are presented. The focus of this work will be the exploration of bi-directional links between disablist ideology and disabled subjectivity, operationalised through interpersonal and institutional processes of lifelong socialisation. Reflections towards development of the under-theorised notion of internalised oppression are presented. Conclusions are that a combination of critical psychoanalytic insights and the participatory methods of liberatory and feminist psychology hold promise in driving disability transformation.     

Disability citizenship and digital capital: the case of engagement with a social enterprise telco

ABSTRACT

This paper uses as its base a key initiative involving a not-for-profit organisation (NPO), government start-up funding and a social enterprise which evolved through three phases. The purpose of the initiative was the development of a smart phone technology platform for people with disability. The paper’s purpose is to answer questions about the ways in which the mobile technology, seen here as assistive technologies, supported the development of disability citizenship and active citizenship. Data were collected through in-depth interviews conducted at three points in the 13-week programme during which participants with disability received customised support for their phone and training in its use, at no cost. Fifteen participants volunteered to take part in the research project, along with their significant other and service provider. Key themes were identified in the preliminary analysis. Exploring these using Ragnedda’s ([2017]. The third digital divide: A Weberian approach to digital inequalities. Abingdon: Routledge) three levels of digital divide, and Wilson’s ([2006]. The information revolution and developing countries. Cambridge, MA: MIT Press) categories of access allowed a series of philosophical, ethical and human services management questions to emerge, challenging the optimism with which the digital economy is presented as a solution to issues of inequality. Although the mobile technologies were very successful as assistive technologies for some participants, the findings reinforced the potential for such technologies to further entrench aspects of social exclusion. They also identified ways in which the shift in the role of the NPO to social entrepreneurship, and its relationships with government and private enterprise, had the potential to undermine the exercise of disability citizenship by turning participants into consumers.     

The devolution of social work knowledge

I am interested in the conditions under which practice knowledge can be used and developed in social work. I argue that the images we tend to have of how social workers apply theoretical knowledge, or appeal to practice wisdom, are misleading because they exaggerate the epistemological significance of individual experience. The concept of ‘practice theory’ is not of much help here because its attempts to codify implicit knowledge, quite apart from begging several questions, illegitimately confer paradigmatic status on the individual's relationship with a text. Instead, we need to begin with a collective analysis of experience, an example of which is offered in the second half of the paper. In effect, this illustrates a systematic process of induction which subjects both personal impression and encounters with theory to some stringent intellectual tests.     

Being an inclusive researcher: seeking questions,raising answers

Abstract

In this article, I reflect on three incidents that occurred in my inclusive research work. As a conceptual framework, I use Bourdieu’s call for a reflexive sociology. My reflection is informed by the principles of the disabled people’s movement, especially giving primacy to the experiences and voice of disabled people. It is also informed by the strong link between the disabled people’s movement and disability studies, which requires academics (including non-disabled ones like myself) to be attentive to their activist role. Making sure that this role is carried out effectively, I argue, entails considering the various factors that make our work possible, and being attentive to the impact of our work. It also entails asking questions, of ourselves and others, and being especially attentive to questions that would go unasked unless we stop to reflect about our work, and the possible answers that these reflections can lead to.     

On being affected: feeling in the folding of multiple catastrophes

ABSTRACT

How possible is it for a life of ongoing feeling to hold, given the world’s current becomings? Much of this article will consider three of the most pervasive of the current disruptions as disruptions of living and feeling: climate change, social change, and, in more detail, what I will call a ‘third media revolution’. All three of these disruptions (and many others) are themselves multiple. They all fold through each other. Living and feeling thus find themselves in the midst of catastrophic multiplicity. This catastrophic multiplicity haunts much of what’s going on. Questions concerning what can be felt within this folding of catastrophes into each other are important contemporary questions. Feeling itself – what it is, what it does, and what the future of feeling might be – has become both a field of struggle, and a complex and open-ended question. A secondary set of questions here will concern the future of studies in relation to these questions of living and feeling – of Cultural Studies, Media Studies, disciplinarity in general, and finally ‘study’, as discussed by Moten and Harney (2013. The undercommons. New York: Minor Compositions).     

Manacled to Identity: Cosmopolitanism,Class, and ‘The Culture Concept’ in Stephen Crane

Abstract

This article begins with a close reading of Stephen Crane’s short story ‘Manacled’ from 1900, which situates this rarely considered short work within the context of contemporary debates about realism. I then proceed to argue that many of the debates raised by the tale have an afterlife in our own era of American literary studies, which has frequently focused on questions of ‘identity’ and ‘culture’ in its reading of realism and naturalism to the exclusion of the importance of cosmopolitan discourses of diffusion and exchange across national borders. I then offer a brief reading of Crane’s novel George’s Mother, which follows Walter Benn Michaels in suggesting that the recent critical attention paid to particularities of cultural difference in American studies have come to conflate ideas of class and social position with ideas of culture in ways that have ultimately obscured the presence of genuine historical inequalities in US society. In order to challenge this critical commonplace, I situate Crane’s work within a history of transatlantic cosmopolitanism associated with the ideas of Franz Boas and Matthew Arnold to demonstrate the ways in which Crane’s narratives sought out an experience of the universal within their treatments of the particular.     

Social policy and transitions to training and work for disabled young people in the United Kingdom: neo-liberalism for better and for worse?

Although New Labour distanced itself from the neo-liberal ‘underclass’ discourses of its predecessors, its approach to disabled young people maintained key aspects of neo-liberalism, particularly an emphasis on individuals’ human capital, aspirations and self-investments as causes of and solutions to disabled young people’s unemployment. This is also apparent in early Coalition government statements. Since the 1990s, policies have focused on providing individually-tailored advice, developing individuals’ skills, and motivating appropriate self-investment. We examine recent evidence that highlights a number of problems with this focus. Notably, it entails a simplistic and individualised notion of ‘barriers’ to employment that cannot account for the complex impacts of disablement and inequality; moves towards open-market models of training and work support create perverse incentives that divert support away from those most in need; employment success is dependent on unpredictable local opportunity structures; and the focus on paid employment undermines other social contributions made by disabled young people.     

Reluctant participation – the experiences of adolescents with disabilities of meetings with social workers regarding their right to receive personal assistance

The aim of this study was to improve understanding of the experiences of adolescents with disabilities concerning meetings that affect their possibility to receive personal assistance in Sweden. Qualitative inductive content analysis was used to describe their experiences. Overall adolescents were found to be reluctant to participate in meetings. Two main approaches could be discerned – taking part and taking part by proxy. The adolescents who took part in meetings tried to adapt their self-presentation to fit with the social workers’ requirements by presenting their worst self, giving requested information, using support and raising their voices. The adolescents who choose to participate by proxy were either being involved or not being involved. Being involved implied involvement before and/or after the meeting. The meaning of participants’ strategies was examined through a social constructivist lens. The results indicate that ‘performing disability’ during the meetings is a prerequisite for obtaining personal assistance. In its current form adolescents’ participation is reduced to tokenism and this raises questions about how to implement a child perspective.     

‘No Nation of Experts’: Kustom Tattooing and the Middle-Class Body in Post-Authoritarian Indonesia

Tattooing among young middle-class people in Indonesia has increased noticeably since the late 2000s. I draw on ethnographic research in tattoo studios alongside interviews and magazine sources to locate the style known as kustom within its social and cultural context. I describe how kustom tattooing is the product of patterns of consumption centred on the body, drawing resources from a globalised, mass media-saturated environment. Indeed, consumers describe it as an important avenue for self-expression. By contrast, tattooists and those inside the scene describe kustom as a way of transcending geographical markers of identity: to be ‘anything and everything’. This article explores this tension between self-expression and the political aims of kustom. Kustom tattooing is also novel by virtue of its absolute emphasis on ‘no expertise’. It thus exposes a space where the stress on expertise and self-improvement, which characterises middle-class cultures in post-authoritarian Indonesia, gives way to creative and hybrid articulations of identity.     

The Dark Side of Art’s Social Turn: Towards a Discourse on the Impact of Art’s Use of Social Forms Upon the Social

The recent “social turn” in art, in which art favours using forms from social life above its own, has been extensively discussed. Relational Aesthetics by Nicolas Bourriaud, Conversation Pieces and The One and the Many by Grant Kester, essays by Claire Bishop who supplies the term “the Social Turn,” and her recent publication Artificial Hells, are now as important to the field as the art they scrutinise. Ironically, however, when this discussion regards the implications of the “turn”, it habitually addresses the effects of this development from – and for – art’s point of view, overlooking the way in which artists’ inroads into social life may be differently regarded in the social realm. As much as this represents a failure to illuminate a particular area for knowledge, it also signifies a failure to take art’s revalorised commitment to the social to its ethical conclusion: such, from two perspectives, is the “dark side” of art’s social turn. This article seeks to mitigate these oversights. In particular, it looks at art in which an artist undertakes another person’s professional work. Considering the effects of this on those whose practices are appropriated, I propose a consultative approach, involving ethnographic and empathetic modes of address. Consequently, this article does not present an answer to the question it poses, “how do professionals in the social realm see art’s appropriations of their practices?” but rather, a framework for approaching that.     

Evaluating Lifeworld as an emancipatory methodology

Disability research is conducted within a highly politicised 'hotbed' of competing paradigms and principles. New researchers, who want to work within the social model, are soon faced with complex and challenging methodological and philosophical dilemmas. The social model advocates research agendas that are focused on the emancipation and empowerment of disabled people but, in reality, these are rarely achieved. To be successful researchers need to engage with innovative and creative methodologies and to share their experiences of these within environments that welcome challenge and debate. This paper focuses on Lifeworld and assesses its value as a tool for emancipatory research. Using examples from a study with parents, whose children were in the process of being labelled as having autism, the paper illustrates how the principles that 'underpin' the methodology offered a supportive framework for a novice researcher.     

Radicalising ‘disability’ in conflict and post-conflict situations

In this article, a radical social model of disability lens is taken to illustrate what counts as ‘disability’ within a neoliberal mindset. The South African and disabled activist Vic Finkelstein describes both an ‘outside-in approach’ that looks at the material conditions of how ‘disability’ is constructed and an ‘idealist’ ‘inside-out’ approach, or how people describe experiences of inequality and disablement. The ‘outside-in’ approach is where the focus of a social model of disability should be in terms of trying to understand how global capitalism or neoliberalism is (dis)ablest and creating impairment. The ‘inside-out’ approach is ‘idealist’ and where the other ‘components’ of the model such as ‘rights’ are located. This article begins with an overview of the relationship between disability and conflict. The article then moves to an inside-out framework to examine how disability is still viewed and created through a medical humanitarianism. Using an outside-in framework, I illustrate how states become disabled through neoliberalism. Lastly, I discuss how ensuring greater participation and rethinking neoliberalism in terms of sustainability may provide us with a way forward in a humanitarian setting and rethinking of disability.     

The evolving construction and conceptualisation of ‘disability’ in Bhutan

This study – a year-long ethnographic exploration of disability and education in Bhutan – finds that two dominant discourses around ‘disability’ are entering Bhutan simultaneously: the discourse of the medical model of disability and the discourse of the social or human rights model of disability. In this paper, I argue that these two discourses are especially exposed in the Bhutanese context to be opposing forces in shaping local conceptualisation and construction of ‘disability’. By examining the Bhutan case, it can be seen that these kinds of disparate and contentious exogenous constructions of ‘disability’ occur everywhere in the world and negotiate with local constructions of ‘disability’ uneasily. Understanding the interactions of disability discourses in the Bhutanese context can help to understand the interactions of disability discourses writ large.     

Objective and subjective conditions for the continuity of the Peruvian extractive development model

ABSTRACT

The Peruvian economy depends for its growth on the export of its mineral resources. The core of the current economic development model is the export of the country's commodities and a free and (relatively) unregulated functioning of the markets. We argue that the continuity of the country's extractive development model is the consequence of the interplay between the objective and subjective conditions of Peruvian capitalist development. The analysis of the objective conditions is focused on the role of the country in the international division of labour, the relation between this role and the country’s economic and business structure, and the functionality of the extractive development model for the Peruvian State. In the case of the subjective conditions, the strength of the political Left, the labour movement and the social movements against mining capital are analyzed     

Relationality, place, and absence: a three-dimensional perspective on social memory

This article builds on recent work on memory and place in the social sciences. One emphasis in the literature on ‘Western’ forms of social memory has been on official, intentional sites of commemoration, such as war memorials and monuments. Based on fieldwork in the north of England with older residents of a former coal mining village, I approach social memory from a different perspective, emphasising the work of memory and its complex interactions with place, absence, social relations and social rupture. Like Village on the Border, this research has taken place in a setting that has undergone significant socio‐economic change: the closure of the South Yorkshire coalfields. The embeddedness of local knowledge in social relations emerge in both Ronnie Frankenberg's work and my own and I explore these topics here in connection with what I term a ‘three‐dimensionality of memory’.     

Calling for accounts: numbers, monsters and membership1

This article questions how accounts are marked. In asking why some accounts ‘pass muster’ and others fail, the analysis brings into focus the extent to which membership work helps hold the social and the technical apart. The analysis contrasts a long insistence on narrative forms of interaction as defining conditions of co‐presence with numerical regimes in which there is an implicit deletion of social contact under fashionable slogans like ‘action at a distance’. Taking numbers to act as ‘bearers of culture’, the paper contests the idea that numerical forms of accountability delete the membership work traditionally associated with narrative forms of account. Attending closely to ‘occasions’ in which it is appropriate for members to deploy numerical accounts rather than verbal accounts, the argument challenges the idea that a face to face negotiation of social order has been superceded by a pervasive use of perfonnance targets. The article begins by exploring how ‘calls to account’ are created by a reporting of adverse budget variatices within organizations. Using an extended example to consider how such ‘gaps’ affect a manager's conduct towards a spouse who is sick, the analysis shows how the use of numbers becomes crucial to sustaining one's affiliation across a range of memberships. As illustrated, the rehabilitation of numerical artefacts into conceptions of the social greatly expands possibilities for interaction beyond that anticipated by the sociological ideal of ‘co‐presence’.     

Challenging a culture of racial equivalence

We live at a time when our understandings and conceptualizations of ‘racism’ are often highly imprecise, broad, and used to describe a wide range of racialized phenomena. In this article, I raise some important questions about how the term racism is used and understood in contemporary British society by drawing on some recent cases of alleged racism in football and politics, many of which have been played out via new media technologies. A broader understanding of racism, through the use of the term ‘racialization’, has been helpful in articulating a more nuanced and complex understanding of racial incidents, especially of people's (often ambivalent) beliefs and behaviours. However, the growing emphasis upon ‘racialization’ has led to a conceptualization of racism which increasingly involves multiple perpetrators, victims, and practices without enough consideration of how and why particular interactions and practices constitute racism as such. The trend toward a growing culture of racial equivalence is worrying, as it denudes the idea of racism of its historical basis, severity and power. These frequent and commonplace assertions of racism in the public sphere paradoxically end up trivializing and homogenizing quite different forms of racialized interactions. I conclude that we need to retain the term ‘racism’, but we need to differentiate more clearly between ‘racism’ (as an historical and structured system of domination) from the broader notion of ‘racialization’.     

Child‐focused Parenting after Separation: Socio‐legal Developments and Challenges

In this article I utilise developing ideas in family law as a backdrop against which to discuss changing assumptions about parenting. In particular, I examine the gender‐neutral assumptions within family law in Australia and elsewhere in the light of seemingly contradictory evidence about the value of post‐separation fathering. That men were equally capable of providing effective parenting was by no means clear at the time that the principle of gender‐neutrality became common in family law—the 1960s and 70s. Only recently, has burgeoning research on fathering begun to more clearly affirm its value and to clarify the conditions under which pre and post separation fathering makes a positive difference. Paradoxically, it is at this very time that legally based challenges to the gender‐neutral, shared‐parenting philosophy of the 1995 Australian Family Law Reform Act have begun to emerge. The often‐perplexed interface between law, social science research and therapeutic intervention presents many challenges. I conclude the article by flagging a number of questions relevant to family therapists in this difficult field of work.