But it’s not all about the sex: mothering,normalisation and young learning disabled people

This paper is about mothering, young learning disabled people, their sexualised and relationship lives and normalisation – not through the lens of the disabled person, but via a mothers perspective and theoretical discussion. As a mother who has a learning disabled daughter, a feminist and an academic my own mothering experience, my Ph.D. research and social theory are woven throughout this paper with the intention of opening up debate about sex, intimacy and normalisation, and how these impact upon young learning disabled people. I suggest that the relationship between sex, reproduction, intimacy and intellectual impairment and a project to decipher what it means to be human in all its dirty glory are also part of the discourse that needs to be discussed experientially and theoretically. So much so that the messy world within which we all live can be variously and differently constructed.     

“I was Excited by the Idea of a Project that Focuses on those Unasked Questions” Co‐Producing Disability Research with Disabled Young People

In this article, we detail the politics and practicalities of co‐produced disability research with disabled young people with life‐limiting and life‐threatening impairments. We centre an ESRC‐funded arts‐informed co‐produced research project that has brought together a Co‐Researcher Collective of disabled young people. Co‐production is an established approach; however, our co‐researchers have led us to develop inclusive research practices that engage with online social research methods in innovative ways. As we detail our experiences, we aim to encourage disability studies researchers and others to adopt virtual environments when researching with and for the lives of disabled people.     

Female researcher safety: the difficulties of recruiting participants at conventions for people with dwarfism

Disability research often favours the use of disabled researchers carrying out research with disabled participants. It is believed to empower disabled people and create results that are more valid. However, little consideration has been given to the ethical implications of this type of research process, including in relation to female researcher safety. This paper provides an autoethnography of my experience of being sexually assaulted when recruiting participants for my doctoral research, at a convention held by an association for people with dwarfism (The term used to refer to someone with this impairment often differs. In this research project terms participants preferred included; dwarf, person with dwarfism, short stature and restricted growth. I use the term ‘person with dwarfism’ as it fits in with the social model of disability by demonstrating that a person is ‘dwarfed’ by a built environment, which is constructed for the average sized person and is therefore disabled). Focusing on gender, disability and sexuality, situated in space, this paper explores the problems encountered when trying to recruit participants within a particular space. This paper suggests that the safety of the researcher, needs more consideration and offers recommendations to increase researcher safety.     

Career development among young disabled artists

This paper reports on the experiences of 47 young disabled artists and the interaction between disability, impairment and the arts in their educational and career pathways. The artists were finalists in the VSA arts/Volkswagen of America Inc. Program, an arts‐based program intended to showcase the talents and accomplishments of young disabled artists aged 16–25. A few artists found their impairment to be a barrier to making art. Many, however, did not think their impairment affected their ability to make art, and a few thought it actually enhanced their artistic ability. These finalists often cited art as a tool for overcoming impairment‐related, disability‐related and other barriers. In this paper we identify effective strategies that these young artists used to further their arts careers. It concludes with a discussion of the implications of the findings and provides recommendations to support young disabled artists in their educational and career efforts.     

Negotiating identities: the lives of Pakistani and Bangladeshi young disabled people

Research has generally amalgamated minority ethnic (all called 'Asian' or 'black') disabled young people's experiences and failed to acknowledge the multiple aspects of Asian and black disabled identities, for example how the combined attributes of race, ethnicity, religion, gender, culture, class and disability shape their perspectives and experiences. In an attempt to address this issue my doctoral research explored the experiences and perspectives of 13 young Pakistani and Bangladeshi disabled people. By drawing on the substantive and theoretical findings which emerged from my analysis in this paper I shall consider how multiple aspects of identity, such as ethnicity, disability and gender, affect this population's identity and self-image and how this makes their experiences different from white disabled young people and other minority groups' experiences.     

The Dialectics of Multiple Identities and the Disabled People's Movement

This paper explores the issue of commonality and difference in the disabled people's movement in relation to ethnicity, gender sexuality, age and class. Hitherto, disability academics have either ignored or tagged on the experience of disabled black and minority ethnic people, women, older people, and gay men and lesbians. When they are discussed, they have more often than not been discussed separately - for example, disabled black people's experience has always been discussed separately, disabled women, disabled gay men and lesbians and disabled older women. Hence it is not surprising if 'simultaneous oppression' is perceived to be the unique experience of a minority of disabled people. Here, I suggest that it is, in fact, the experience of a majority of disabled people since the majority is not a homogenous mass of disabled white heterosexual middle-class young men, but individuals from diverse backgrounds with a wide range of identities and experiences, and to accept that their only concern is disability is to fall into the same trap as the general population most of whom only see the impairment and not the person. It is imperative to note, however, that the blame does not lie with the social model of disability, as it is sometimes assumed, for that is merely a conceptual tool. The paper discusses the concept 'simultaneous oppression' as applied to the experience of black women and later disabled black people. It is suggested that this is too simplistic an analysis to capture the day to day experience of those who possess negatively labelled multiple identities. An alternative framework is suggested to link the experience of different groups of disabled people and, hence, offer a common ground for unity in the disabled people's movement.     

When they call me cripple: a group of South African adolescents with cerebral palsy attending a special needs school talk about being disabled

Central to the experience of disability are social and political forces and discourses which position people in particular ways. Little is known about the experiences of individuals with disabilities living in low-income and middle-income countries. We investigate the lived experience of a group of South African adolescents with cerebral palsy. In-depth interviews were conducted with 15 adolescents with cerebral palsy. Data were analysed using interpretive phenomenological analysis. The participants position themselves between the medical and social models of disability, in a liminal space between ‘normal’ and ‘disabled’, but do not identify with either group. They describe a ‘hierarchy of disability’ and position themselves in-between more serious sensory impairments and less serious emotional and learning disabilities. Being disabled is associated with being taken care of, infantilised and being powerless. Consequently they aspire to achieve independence and autonomy, and face danger, which are seen as signifiers that they are not disabled.     

Repositioning mothers: mothers,disabled children and disability studies

In this article we set out to review the ways in which mothers of disabled children have been portrayed within disability studies and the more broader academic literature. We argue that within disability studies mothers of disabled children occupy a liminal position because they are often not disabled and yet they can experience forms of disablism. Their experiences can differ markedly from the experiences of mothers of non‐disabled children and yet the consequences and outcomes of these experiences, such as developing a ‘special competence’ is largely overlooked. Mothers can work to effect change on behalf of their children and, in some cases, for disabled people more generally, however, this role of activist mother is largely undervalued. The review of literature presented here leads us to conclude that further research needs to be undertaken exploring and highlighting the ways in which mothers of disabled children negotiate, manage and approach their daily lives, operating within what are described by feminist scholars as oppressive mothering ideologies and disabling environments.     

Disability Culture and Cultural Competency in Social Work

Despite recognition of the importance of cultural and social diversity in social work education and practice there is a dearth of social work literature related to disability culture. A review of disability studies literature indicates that the disabled people's movement already affirms and celebrates the existence of disability culture as characterized by several agreed upon assumptions: disability culture is cross-cultural; it emerged out of a disability arts movement and its positive portrayal of disabled people; it is not just a shared experience of oppression but includes art, humour, history, evolving language and beliefs, values and strategies for surviving and thriving. Essentialist concepts of culture, as represented in assimilationist and pluralist social work approaches, provide social workers with the false belief that there are cultural competencies that one can develop that are sufficient to become more culturally sensitive. However, analysis of the critical theory underpinning disability culture demonstrates that an understanding of cultural politics is fundamental to social work education if it is to support the work of the disabled people's movement in demystifying and deconstructing the norms, discourses and practices of dominant culture which are represented as neutral and universal.     

Commonality and Difference in the Movement: an 'Association of Blind Asians' in Leeds

Qualitative research with a group of blind Asian people in Leeds indicated that issues of 'difference' were perceived as more important in mobilising disabled people at a local level than the issues of 'commonality' which characterise the international disability movement. Respondents identified more strongly with their experience of specific impairment and specific cultural identity than with their common experience of disablement. It is argued that such issues are common to other social movements and that the disability movement can learn much from the histories of Black people's movements and the women's movement. In building a successful movement at a local, national and international level, disability alliances will need to challenge racist stereotypes about Black disabled people and their families. They will need to support Black-led groups which organise separately while, at the same time, creating more enabling environments for Black people to participate more fully.     

Physically disabled women and sexual identity: a PhotoVoice study

The issue of sexuality for young disabled women is not often talked about in society. Our study aimed to explore four young physically disabled women’s experiences and perspectives regarding sexuality and disability. We used PhotoVoice, a participatory action research method which uses photographs, to capture and convey our participants’ concerns. Through their photographs they showed that everyday interactions with others, particularly strangers or meeting people for the first time, were made difficult by how they were always seen as having a disability. Other parts of their identity were not recognised. The change the young women wanted was for people to see them as young women and not just as disabled.     

Reinterpreting learning difficulty: a professional and personal challenge?

I want to explore in this article the ways in which people with a learning difficulty are constructed in a number of ways as disabled, as limited, as being special, and so on. Constructions can also be utilised for different purposes – to ensure that they have effective levels of support and to elevate the status of people with a learning difficulty. Positive constructs may articulate an ‘accentuation of the positive’ as Goodley and Armstrong prescribed. However, whilst I agree with this sentiment, one echoed in Swain and French’s important formulation of an affirmative model of disability, and one that I have also espoused, professionally I also feel that my experience of working with people with learning difficulties makes me suspicious of generalised statements about people, even those deemed positive. This may be especially true in a period of financial rationalisation, where such constructs may seem inevitable in the fight for effective support for people with a learning difficulty.     

Disability, Ethnicity and Childhood: a critical review of research

Whilst there is an increasing body of literature on the perspectives of carers of disabled children, there is little research giving the disabled child's perspective from either majority or minority populations. Indeed, the voices of black and Asian children in disability research have been almost silent. This literature review collates and analyses existing knowledge about the perceptions held by disabled and non-disabled children, and young people from black and Asian families concerning issues of disability and impairment. The Disability Movement has long proclaimed its belief in the full participation and self-representation of all disabled people. However, despite this laudable objective, the Disability Movement in Britain has mirrored society in general and for the most part been led by white, middle-class, heterosexual, articulate males. This review discusses the simultaneous oppression faced by black and Asian disabled children, and concludes that their experience is unique and different from that of white disabled children. Accordingly, it emphasises the need for further research about the subjective experience of black and Asian disabled children in order to meet their particular needs.     

Simulation Exercises in Disability Awareness Training: A Critique

This paper takes a critical look at simulation exercises. Little evidence exists that these exercises have a positive effect on either attitudes or behaviour but, despite this, they are used extensively in disability awareness training, both for children and adults. It is argued in this paper that by individualising and medicalising disability, and by focusing excessively on problems and difficulties, simulation exercises provide false and misleading information, and inculcate negative, rather than positive, attitudes towards disabled people. It is suggested that simulation exercises fail to simulate impairment correctly, and address neither the coping strategies and skills disabled people develop in living with impairment, nor the cumulative social and psychological effect of encountering social and physical barriers over a lifetime. Rather than using simulation as a means of attempting to understand the experience of disability, the paper concludes by advocating the use of disability equality training, which is devised and run by disabled people themselves.     

Managing manipulation: tools and challenges in creative collaborations with intellectually-disabled people

There has long been an ‘us’ and ‘them’ mentality when it comes to the production of disability narratives on screen, driven by an assumption that non-disabled people cannot accurately interpret the disabled experience. Given the appalling history of representations by non-disabled filmmakers, it is easy to understand why many academics and members of the disability community favour the complete control of disability content by disabled people. But this approach has failed the many compelling ‘disabled voices’ that go unheard because they do not reach audiences. The most practical solution is to forge new models of creative collaboration between disabled and non-disabled people, something I attempted to do with my PhD film, a comedy feature entitled Down Under Mystery Tour. I discovered that the most important tool in such collaborations is the utilisation and management of manipulation, one that prioritises skill and experience and best expresses the unique perspective of intellectually-disabled collaborators.     

Arts policy and practice for disabled children and young people: towards a ‘practice spectrum’ approach

This article argues for an approach to the evaluation of arts policy and practice for disabled children and young people that goes beyond the dialogic antagonism between Disability Arts and community arts, and towards a ‘practice spectrum’. Little is known about the extent to which a Disability Arts perspective has extended into arts policy and practice for disabled children and young people. The article aims to redress this knowledge gap. It is based upon two sets of data collected in relation to the East Midlands region of England during 2014. First, a critical evaluation was conducted of official and institutional attitudes to arts practice with disabled children and young people. Second, interviews exploring contemporary practice were conducted with 24 arts organisations. Their practice represents a diverse range of art forms and programmes undertaken in the region, and a range of attitudes and positions taken towards disabled children and young people. We argue that the best way to conceive of current practice is as a spectrum, as opposed to an antagonism between community arts and Disability Arts perspectives. There is, however, little evidence of the penetration of a Disability Arts perspective into policy and practice for children and young people.     

Abuse and Disabled People: Vulnerability or social indifference?

This paper analyses current literature surrounding issues of abuse and disability, and discusses whether the forms of abuse experienced by disabled people results from an individual vulnerability, or as a consequence of social attitudes towards disabled people. Three case studies form supportive evidence, and have been compiled from personal research, they represent a combination of abusive features, rather than any one individuals situation. The study hopes not to suggest that all disabled people are especially vulnerable to abuse, but asks if society and existing welfare services acknowledge and respond to allegations of abuse without prejudice to disability. This study formed my dissertation paper as a student on the BA (Hons) Social Work and Welfare Studies at the University of Central Lancashire, and I would like to thank my dissertation tutor, Bob Sapey, for his guidance and support throughout the study.     

Negotiating Psycho-emotional Dimensions of Disability and their Influence on Identity Constructions

This paper uses Foucault's concept of 'technologies of power' to explore the ways in which the psycho-emotional dimensions of disability are created and maintained within society. The manner in which gaze and self-surveillance operate on the bodies of people with impairments to leave them feeling worthless, unattractive and stressed is considered, and the effects of impairment on these processes are also discussed. However disabled people are not simply passive victims of this form of emotional disablism--many exercise agency and resist. The manner in which disabled people resist the negative stereotypes is described and the process of 'coming out' as a disabled person is offered as an example of a 'technology of the self'. This interplay of dominating and emancipatory forces is shown to contribute to a disability identity, which is fluid and which better represents the diversity of the disability experiences of disabled people than an essentialist disability identity.     

Involving Young Disabled People in the Research Process: The Experiences of the PIE Research Project Team

Young disabled people are still rarely involved in the research process, despite an increasing emphasis on their inclusion as participants. The Participation in Education (PIE) project examined how disabled children with little or no speech could be involved in their education. The project team worked with an existing group of young disabled people to develop ways in which they could take part in the research process. The group was involved in developing the methodology, group work, observation, commenting on findings and in the dissemination process. Their involvement undoubtedly enriched the research and the benefits of working with an established group were manifold.