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.     

Education of people with disabilities: a capability-context framework of culture

People with disabilities find themselves at the margins of ideas on education in the rights-based and the agency-focused frameworks (the capability approach). This article socially situates the rights-based framework to extend agency as an educational opportunity to make it participatory in cross-cultural contexts, and individually locates the agency-focused framework to enhance agency as multi-dimensional educational experience-outcome journeys across cultural contexts. This extended scope of rights and enhanced capacity of agency is advanced as the capability-context framework of culture. The framework focuses on analytically distinct yet connected emerging agents with capabilities of both dialogical discourses (retrospective reflexivity – macro-mechanisms) and dialectic narratives (bounded participation – micro-structures), which can provide access to deep social structures, and their many ways of being (micro-mechanisms) and specific ways of doing (macro-structures) that enable, but also disable the social choices of people with disabilities, to open new possibilities for them, and for all across contexts.     

It takes a sister: sisterhood and Black womanhood in families of people with intellectual and developmental disabilities

This study explores the sibling relationships of Black women with sisters who have intellectual and developmental disabilities in the southeast United States including Georgia, South Carolina, Florida, and Louisiana. The researchers used disability/critical race theory to understand the perceptions and stigmas associated with disability relating to social, cultural, and psychological structures within sibling relationships. Results were captured in four themes: cultural perceptions of family and extended kin; sibling relationships; beliefs about the self as a sister; and siblings’ identities. The findings from this study will contribute to research in disability studies by providing a better understanding of the intersections of identities and the familial experiences of diverse families.     

Perceived professional standards and roles of public relations in China: Through the lens of Chinese public relations practitioners

As the first quantitative examination of perceived public relations professional standards in China using an online survey, this study was designed based on the standards of professional standards inventory Cameron, Sallot, & Lariscy (1996) constructed and tested among practitioners in the U.S. The survey results suggest six dimensions of perceived standards of professional performance: (1) role and function in organizational strategic planning, (2) sufficiency in professional training and preparedness, (3) gender and racial equity, (4) situational constraints, (5) licensing and organizational support, and (6) participation in the organizational decision-making team. Four dimensions of public relations roles were also identified by the survey participants: (1) brand promotion facilitator, (2) public information specialist, (3) media relations counsel, and (4) conflict management expert. Primary practice area was found to affect how Chinese practitioners perceive the six clusters of professional standards and the four identified public relations roles. These findings provide insights for both practitioners and researchers on how Chinese public relations practitioners view public relations as a profession and how the profession currently holds its professional standards in China.     

Community reintegration for people with psychiatric disabilities: challenging systemic barriers to service provision and public policy through participatory action research

People with psychiatric disabilities represent a growing group within the population of nursing home residents in the USA. Despite a preference for living in community‐based settings, the availability of supportive services for community living is hindered by barriers at both the service provision and public policy levels. Therefore, understanding and responding to the community living and participation needs of people with psychiatric disabilities is a highly relevant area for action research. This paper discusses a participatory action research endeavor carried out in collaboration with key personnel at Centers for Independent Living who work to provide community reintegration services for individuals with psychiatric disabilities. The events of this 15 month partnership are extensively described, analyzed and discussed. Findings reflect the critical need for communication, dialogue and action to support people with psychiatric disabilities in the community.     

Forced marriage of people with learning disabilities: a human rights issue

This paper reports some of the findings of an exploratory study which sought to better understand the demographics of forced marriage of people with learning disabilities and the contexts in which such marriages may occur. It was found that forced marriages of people with and without learning disabilities showed broad similarities in relation to ethnicity, some differences in terms of age and substantial differences in terms of gender. Men and women with learning disabilities are equally likely to be victims of forced marriage. The reasons for people with learning disabilities being forced to marry are most often associated with a desire on the part of families to secure permanent care, but can also be associated with cultural (mis)understandings of the nature of disability. These findings are contextualised by considering the relationship between forced marriage, human rights and learning disability.     

Dementia,disability rights and disablism: understanding the social position of people living with dementia

This article considers the recent history and consequences of positioning people living with dementia in the realms of disability, disablism and disability rights. The geo-political focus is the United Kingdom and neighbouring resource-rich nations in the Global North. The first section examines the growing trend of identifying ‘dementia’ with ‘disability’, a trend fuelled by the expansion of dementia-related activism and research. The second section focuses on how researchers who have published in Disability & Society and other journals have applied the social model of disability to individuals living with dementia. The third section discusses three conceptual challenges that lie ahead for those who choose to research and theorise the dementia/disability connection. These challenges concern: theorising dementia as disability; understanding intersectionality in dementia contexts; and understanding ‘abuse’ in dementia contexts.     

Young people as global citizens: negotiation of youth civic participation in adult-managed online spaces

With the proliferation of new media technologies, online spaces for civic engagement are being used as new sites by the young people for enacting global citizenship. Some of these online civic spaces are managed by parent organizations and guide the participants towards accomplishing goals that align with the institutional policies. We use Stuart Hall’s theoretical framework to ground the two methods we used for empirical research- textual analysis of the selected online spaces and in-depth interviews with young bloggers. Our analysis shows how negotiated reading of the encoded messages on the online platforms for youth civic engagement marks a political moment of signification in which there lies a possibility of challenging the dominance of the adult centered notions of civic engagement. Shelat’s online civic culture framework [2014. “Citizens, Global Civic Engagement on Online Platforms: Women as Transcultural Citizens.” Dissertation] helped us examine how these managed platforms encode global citizenship with pre-designed participatory practices that reinforce the hegemonic definition of youth political participation. Interviews of young bloggers on two online global spaces foreground the process of negotiation with the dominant definitions and the use of decoding strategies to create scope for subjective, more local definitions, as well as practices of civic engagement and global citizenship. Though literature suggests that adult-management of online youth spaces perpetuate a gap between the adult-centric notions of participation and the youth oriented ideas of civic engagement, our study reveals that the young participants find ways of articulating their ideas and enter these spaces with plans on how to fulfill their civic goals.     

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.     

Beyond friendship: the nature and meaning of close personal relationships as perceived by people with learning disabilities

Many people with learning disabilities aspire to having friends and to forming close relationships. Often the latter are discouraged, but for those who enter into such a relationship little is known about the meaning and value it brings to their lives. The aim of this study was to gain an insight into the close relationships of eight couples with learning disabilities using a combination of dyadic and one-to-one interviews. Data collection and analysis was informed and guided by the core principles of grounded theory. Five significant types of benefits were identified from having close personal relationships, namely: comradeship, a sense of contentment, availability of mutual support, coping with the ups and downs of relationships, and a continuing commitment. Service providers could do more to facilitate the formation of close meaningful relationships, and strategies for doing this need to be identified and evaluated.     

The accommodation and support needs of people with a mental illness: A process and framework for action

Abstract

This paper reports the results of a consumer-focused assessment of the accommodation and support needs of people with a mental illness living in a regional city. The study utilises a 'pathway to stability' approach to assess the phase-contingent accommodation and support needs of mental health consumers through interviews and focus groups with consumers, carers and service providers. The study identifies five broad phases of the life course impacted by mental illness—beginnings, long-term needs become clearer, instability as needs evolve, finding stability and ongoing. Five key issues—information, self-competence, comorbidity, coordination and flexibility were expanded upon in focus groups. Principles for planning future service delivery are identified. The implications of the findings and research methodology for social work practice and research are discussed.     

Unmet health care needs of people with disabilities: population level evidence

The present study examined population level data on unmet needs for adults with physical, sensory and cognitive disabilities, using the National Population Health Survey. The study revealed that disabled adults (aged 20–64) reported more than three times as many unmet health care needs as their non‐disabled counterparts. Even after controlling for the effects of age, gender and poor health, disability had a significant effect on the perception of unmet needs, particularly disabilities associated with pain, hearing impairment and emotional problems. The greatest deterrent to receiving needed services among individuals with disabilities was cost. Despite being publicly funded and thereby presumably equally accessible to all, the health care system in Canada fails to meet the needs of some of its most vulnerable constituents – adults with disabilities.     

Vocational rehabilitation of disabled people in Germany: a systems-theoretical perspective

Avoiding inequality of opportunities based on individual characteristics such as sex, race or disability is of central concern for social policy. One of the most important aspects of social inclusion is integration into working life. In Germany, a comprehensive system of vocational rehabilitation has been developed aiming to integrate disabled people into the labour market. This paper contributes to a better understanding of exclusion and inclusion mechanisms related to employment participation of disabled people through the application of concepts from systems theory. We identify the societal part systems influencing these mechanisms and structure them using a multi-level approach.     

Psychiatrist–consumer relationships in US public mental health care: consumers’ views of a disability system

The US public mental health system is a disability system. By this is meant that public programs for people with mental illness serve consumers who are seriously and chronically ill, functionally disabled and eligible for benefits by virtue of their disability. This study explores, through focus groups and qualitative data analysis, the perceptions of these consumers of their relationships with public sector psychiatrists. Thematic analysis finds relationships of three types – compliance, collaboration and contention – and constituent sub‐themes that specify these further. Issues of poverty and powerlessness arise in every category, but especially in contentious relationships. Although the converse is widely believed to be true, this paper argues that the economic and political empowerment of people with psychiatric disabilities is vital to the success of their clinical care     

Labeling albinism: language and discourse surrounding people with albinism in Tanzania

This article is based on a qualitative study that set out to analyze the labels and terms attached to 28 people affected by albinism in villages in Kilolo district, Tanzania. Even though national and international attention to killings of people with albinism has attempted to improve general knowledge of albinism and reduce discrimination, most of the community members within the study had little knowledge of the (bio)medical explanations for albinism and tended to marginalize people with albinism. Framed within a wider moral discourse on illness, disability and socially appropriate behavior, albinism is mostly considered to be God’s will or the consequence of past misdeeds within the family, and many of the existing labels for people with albinism express such ideas.     

Recognising the agency of people with dementia

People with dementia have been assumed to possess weak or even no agency, so this paper provides a novel contribution to academic debate by examining their actual potential for agency. The author draws on findings from a qualitative study of everyday decision-making by people with dementia that aimed to identify the role of social factors (such as gender) in influencing their involvement in decisions. Whilst decision-making constitutes a form of deliberative agency, the research also identified when agency was alternatively habituated, embodied or emotional. The Economic and Social Research Council-funded research was undertaken in the North of England. Existing theoretical perspectives on agency are critiqued, particularly in relation to rationality, language and individualised agency. The study highlighted that people with dementia who lack deliberative capacity can nonetheless demonstrate creative capacity for agency. A more expansive concept of agency is needed in social science theory that is informed by the experiences of cognitively disabled people.     

Disablism in the lives of people living with a chronic illness in England and Portugal

This article is based on research about the daily lives of people living with chronic illnesses in England and Portugal. Through the first-person narratives of participants, I argue that the lives of people living with debilitating chronic illnesses are affected by disablism, discrimination and exclusion. These aspects affect them in several important realms of life such as lack of or poor social support, difficulties in obtaining reasonable adjustments or the inability to obtain any kind of state support at all. These aspects are also widespread and compound and greatly influence their lives, beyond or in addition to the physical experience of the illness itself. I conclude that it is fundamental to change these structural and policy aspects and that people should have access to what I have termed a paradigm of sustained well-being, despite the illness.     

Sexual abuse in adulthood: Ongoing risks for people with learning disabilities

This paper reports findings of a 3-year research programme into the sexual abuse of adults with learning disabilities conducted at the University of Kent. Inconsistent reporting to and by services can be seen in the results, including lack of agreed practice around consent to sexual activities between service users. Abuse is also perpetrated by staff, volunteers, family members and other known and trusted adults. Thus both definition and detection are important competencies for services to develop. Abuse reported was predominantly perpetrated by men on both women and men with learning disabilities, and the gender issues raised by tackling sexual abuse in unequal staff teams, with their male style of management and a female workforce, are considered. Outcomes of the reporting process are considered and services for adults are urged to take a more proactive stance.     

The use of photovoice with people with intellectual disabilities: reflections,challenges and opportunities

Photovoice is part of the growing use of participatory research approaches with people with intellectual disabilities. In this paper we explore the process, opportunities and challenges associated with the use of photovoice with people with intellectual disabilities, illustrated through a research project entitled ‘This Is Me’. Photovoice requires researchers to share power and control in the research process and to tolerate uncertainty. Large investments in time and money are also required. These challenges, however, are outweighed by the benefits of the use of photovoice with people with intellectual disabilities. Photovoice creates a space where people with intellectual disabilities can meaningfully participate and exert control in the research process, and as such is an empowering experience. As a participatory research approach, photovoice is accessible and offers the opportunity for people with intellectual disabilities to develop new skills, confidence and experience inclusiveness in their own terms.     

Barriers to employment as experienced by disabled people: a qualitative analysis in Calgary and Regina,Canada

Public policies stress greater inclusion of disabled people in the labour market and suggest ways to implement accommodative measures to these ends. Often missing from this literature is the experiences of disabled people in labour markets. This article reports results from a qualitative study conducted in 2005 and 2006 consisting of one‐to‐one and focus group interviews with 56 disabled individuals participating in employment training programmes in Calgary and Regina, Canada. Findings suggest the presence of workplace and employer discrimination and labelling as primary factors impeding respondents’ success in securing and maintaining employment in the labour market. The 56 respondents provide strong evidence that perceptions of disability have a greater impact on their inability to maintain and secure employment than does the lack of accommodative practices and measures in the workplace.