The Researched Opinions on Research: visually impaired people and visual impairment research

In this paper, we describe our research review, commissioned by 'the Gift of Thomas Pocklington', into the opinions of visually impaired people on visual impairment research. We interviewed 37 visually impaired people across Central Region, Scotland. Our findings suggest areas of need for visual impairment research, both concerning what is researched and how it is researched. We make recommendations for future research addressing both resource and methodological issues. We suggest increasing resources for recruiting participants and multimedia dissemination (e.g. audio tape, Braille, Moon). Methods may need to be refined to address difficulties in recruiting participants, and to capture the diversity of strengths and needs of visually impaired people. We make three core recommendations that identify the need for research to: respect people's individuality; be practical and action orientated, and contribute to an empowering and emancipatory research agenda. We conclude by reflecting on our role as community psychologists through examining the ideological position we adopted in this study.     

Aging, disability, and disabled older people in India

India is witnessing a demographic revolution, leading to a considerable increase in the proportion of older people in the population. Similarly, life expectancy of both the mentally and physically disabled has improved considerably. About 5% of Indian older people have problems with physical mobility. Aging has become a gender issue in India not only because more women are surviving into old age; they are also vulnerable and disadvantaged in many ways. In most cases they are the only caregivers available for the old and disabled. Older Indians are considered a high-risk group for multiple morbidity. It is estimated that nearly four million Indians suffer from mental problems. India has around 12 million people designated as "handicapped." However, little information is available about disabled people who grow older. The National Policy on Older Persons, which has been recently formulated, aims at providing an improved quality of life for millions of older Indians. However, the concerns of older disabled and of the disabled who grow old are still treated separately in both policy and practice.     

Denial of disability discrimination by disabled people in China

In contrast to the previous scholarly focus on anti-discrimination, which has long been described as a salient topic in the disability research area, this article discusses evidence to conclude that disabled people in China are inclined to deny social discrimination instead of finding ways to fight for social inclusion. Through interviews and observations, this article generalizes five types of causes – institutional causes, environmental causes, societal causes, familial causes and psychological causes – to explain an ‘observed phenomenon’ of discrimination denial in China. The authors worry that the phenomenon of discrimination denial might represent an even deeper type of discrimination, which might severely hinder the inclusion of disabled people into the mainstream. It is hoped that scholars may pay more attention to the intricate nature and fundamental paradox related to disability discrimination in non-western societies.     

Developing a model of disability that focuses on the actions of disabled people

Disabled people, writers on disability and disability activists stress the importance of disabled people being included in all aspects of society. I argue that a major omission from this inclusiveness is that no current model of disability focuses on the impact of the actions of disabled people on disability. Disabled people are not passive bystanders, powerless to reduce the restrictions of disability. On the contrary, we are central to actively limiting its constraints. I develop a model of disability, called ‘active’, which focuses on the effects on disability of the individual and collective actions of disabled people. I describe published findings which indicate that engaging in self-help, using support groups and deploying assistive technology can all reduce the limitations of disability. Recent increases in the number of disability support groups and developments in assistive technology have substantially augmented the potential for disabled people to combat the effects of disability.     

Exposing the protected: Ghana’s disability laws and the rights of disabled people

Disabled people in Ghana continue to experience various forms of discrimination and social exclusion. These occur despite the fact that there are several anti-discriminatory laws that are meant to protect the rights of disabled people and facilitate their participation in mainstream social, political and economic activities. As it is, the laws have not completely eroded the discrimination and in some instances appear to even institutionalise the discrimination that disabled people experience. It is important that the state pays more attention to amending aspects of these laws and putting them into practice.     

Socially disabled: the fight disabled people face against loneliness and stress

Abstract

In 2018, the United Kingdom appointed its first Minister for Loneliness. This article discusses some of the barriers which may contribute to why disabled people were found to be one of the largest groups affected by loneliness. Utilizing ethnographic examples supported by facts, the article demonstrates how even when seeking to fight loneliness, and to reduce the stressors of everyday life, disabled people are often at a disadvantage, or excluded. The article raises questions concerning self-social exclusion and discusses recommended avenues for further research.     

The struggle for citizenship: the case of disabled people

The notion of 'citizenship' has become a popular slogan of governments who espouse a commitment to democratic ideals. Such discourse tends to emphasise responsibilities with little serious significance being given to the question of rights. In this paper we explore the continual discrimination which disabled people experience and which militates against the realisation of meaningful citizenship. The struggle for citizenship is viewed as an affirmation of the value of choice, independent and control which disabled people conceive in terms of human rights.     

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.     

Working with the Experts: collaborative research with people with an intellectual disability

This paper reports on part of a wider study concerned with the collaborative efforts of an inquirer and six people with an intellectual disability, to develop a grounded theory explaining the processes by which these informants manage the relationships within their personal communities. The study was conducted through a series of in-depth interviews with each informant; a process characterised by information sharing, tentative theory development and elaboration, and informants' checking the accuracy of the emerging theory. This inductive approach allowed not only an insight into the lives of each informant, but recognised the informants' expertise in matters concerning their own lives and thus facilitated the emergence of theoretical elements of relevance to the informants themselves. The focus of the paper is on the collaborative or partnership approach adopted. The outcomes of the research partnership are detailed and implications drawn for the role of research in the lifestyles of people with an intellectual disability.     

Aversive disablism: subtle prejudice toward disabled people

Blatant forms of prejudice towards disabled people appear to be disappearing in the UK. However, subtle forms of prejudice remain and may be highly damaging to the achievement of the vision of disabled people being 'respected and included as equal members of society'. In order to assist placing subtle forms of prejudice within a framework, the term aversive disablism is introduced, developed from aversive racism theory and building on Miller, Parker and Gillinson's definition of disablism: 'discriminatory, oppressive or abusive behaviour arising from the belief that disabled people are inferior to others'. Aversive disablists recognize disablism is bad but do not recognize that they themselves are prejudiced. Likewise, aversive disablism, like aversive racism, is often unintentional.     

Crip theory and the disabled identity: why disability politics needs impairment

This article highlights the importance of recognizing both the ontology of impairment as it relates to the creation of the disabled identity as well as why articulations of the disabled identity being ‘crip’ obfuscate potential politics. Examining how the disabled identity has been cast as a coherent social and political category, rather than the messy and complicated identity it truly is, I argue the adoption of a post-structuralist orientation by activists and advocates is bad for disability politics. Providing two examples, the first focusing on a publicized rape case of a person with an intellectual disability and the second on the importance of disability rights claims based on visibility of impairment, I show how articulations like those made in crip theory can have serious, negative implications for the lived experience of people with disabilities. I conclude with a call for disability studies scholars to engage disability politics in their work.     

Public health,research and rights: the perspectives of deliberation panels with politically and socially active disabled people

Public health research purports to provide the evidence base for policies, programmes and interventions to improve the health of a population. However, there is increasing awareness that the experiences of disabled people have played little part in informing this evidence base. This paper discusses one aspect of a study commissioned by England’s National Institute for Health Research (NIHR) to review the implications for public health of theories and models of disability. This part of the study focused on the development of a tool or decision aid to promote ethical inclusion of disabled people in public health randomised controlled trials (RCTs) and evaluative research. The tool was introduced at four regional ‘deliberating panels’ involving politically and socially active disabled people. In addition, we held a panel with public health professionals. The deliberation panels debated how the focus of public health was narrowing, why disability was excluded and positive and negative issues with using rights to guide research and evaluative practice. Politically active disabled people argued for a social model of human rights to guide any rights based tools or decision aids in public health and disability research.     

Being disabled: towards a critical social ontology for disability studies

In Disability Studies the question of ontology is establishing itself as a live issue. Whilst there are many arguments and tendencies emerging from this literature, this paper identifies and critically examines an approach to the ontological question in disability studies that is based on an appeal to frailty as a universal characteristic of humanity. The argument builds on the relatively familiar claim that everyone is only temporarily able-bodied. This approach is exemplified in recent work by Bryan Turner and by Tom Shakespeare and Nick Watson. I argue that their universalistic approach is problematic. While it may constitute a theoretical means of ameliorating the existential negativity associated with being disabled it does so at the expense of disability identity. What is required is a critical social ontology that problematises non-disablement and exposes the forms of invalidation that lie at the heart of disabling culture.     

The effectiveness of adult day services for disabled older people

Adult day care has attracted a considerable amount of attention among researchers, practitioners, and policymakers. However, there have been few efforts to synthesize empirical results. This paper reviews research that determines the effectiveness of adult day services in improving client functioning, alleviating caregiver stress, and delaying nursing home placement. In addition, the strengths and limitations of the research are considered. This paper concludes with a discussion of policy-relevant issues that must be addressed when determining the effectiveness of adult day services.     

The effect of disability on the net worth of elderly people

As demographic shifts make the Social Security program financially vulnerable, the responsibility for income security in old age will shift from the government to elderly people. In this changing environment, the accumulation of wealth will be a crucial issue because wealth holders can draw income from assets, which can supplement retirement income. Thus, wealth (or net worth) is a proximate indicator of economic well-being of the elderly. This article presents the findings of a study of the net worth of elderly people with disabilities. The major findings were that a smaller proportion of elderly people with disabilities has assets of any type compared with elderly people with no disability; the dollar value of each type of asset is smaller among elderly people with disabilities than among elderly people with no disability; and the net worth of people with disabilities is smaller than that of elderly people with no disability even after other variables were controlled.     

International guidelines and the inclusion of disabled people. The Ugandan story

Uganda has made much progress towards including disabled people in its mainstream development, particularly in the political agenda. The exact process by which this has been achieved and the relationship between this and international guidelines and legislation are not known. This study undertakes to examine this from two specific perspectives: (1) How do international documents relevant to disabled people relate to national legislation in Uganda? (2) What can this comparison, together with the perceptions of stakeholders, tell us about how the legislation and services could improve? International legislation and Ugandan legislation is reviewed and compared. Data from 5 semi‐structured key informant interviews and 6 focus group discussions involving a total of 38 people are collected and analysed. The themes arising from the data are related to the documents, legislation, policies and other relevant literature. The results examine the barriers to service provision; the role of change; the importance of representation; policy and legislation issues; and the effects of devolution. Five specific findings relate to how legislation and services can improve: more resources to increase access for disabled people; strong leadership and collaboration between Disabled People’s Organisations (DPOs) funding bodies and governments; awareness raising and training; representation from all impairment groups; and raising the profile of disabled people through further legislation.