Examining the trajectories of children providing care for adults in rural Kenya: Implications for service delivery

Research on caregiving children tends to be limited to children's caregiving experiences of parents with a specific disease or disability. This has led to a common perception that children's caregiving is a single, uniform and often long-term experience. Whilst this is most certainly the case for many children in economically more advanced countries, this may not hold true in rural Africa, where poverty and AIDS can have significant knock-on effects on entire families and communities. This paper seeks to develop a more complex understanding of children's caring experiences by asking children whom they have cared for over time and explore the different pathways that lead to their caregiving at different stages of their lives. The study reports on qualitative data collected from 48 caregiving children and 10 adults in the Bondo district of western Kenya in 2007. A multi-method approach was adapted, with historical profiles, Photovoice and draw-and-write essays complementing 34 individual interviews and 2 group discussions. A thematic network analysis revealed that children's caregiving was not confined to a single experience. Children were observed to provide care for a number of different family and community members for varying periods of time and intensities. Although their living arrangements and life circumstances often gave them little choice but to care, a social recognition of children's capacity to provide care for fragile adults, helped the children construct an identity, which both children and adults drew on to rationalise children's continued and multiple caring experiences. The study concludes that agencies and community members looking to support caregiving children need to consider their care trajectories — including whom they care for as well as the order, intensity, location and duration of their past and likely future caring responsibilities.     

Variables that affect teachers' attitudes towards disability and inclusive education in Mumbai, India

Teacher attitude is one of the most important variables in the education of children with disabilities. Attitudes of general educators in the city of Mumbai, India, toward disabilities and inclusion of students with disabilities into regular schools were studied through the usage of two attitude scales. The study investigated whether variable background characteristics such as age, gender, income level, education levels, years of teaching experience, acquaintance with a person with a disability, having a family member with a disability, frequency of contact and closeness to a person with disability affect the attitudes of teachers towards people with disabilities and towards inclusion of students with disabilities into regular schools. The analyses revealed that while some of the variables of interest did affect teachers' attitudes towards disabilities, the only variable that affected teachers' attitudes towards inclusion was prior acquaintance with a person with a disability.     

THE OTHER "CHILD STUDY": Figuring Children as Consumers in Market Research, 1910s–1990s

This article examines how notions of "the child" were constructed in marketing research literature from the 1910s through the 1990s. Drawing on children's industry trade literature, market reports and books, I argue that children have become increasingly portrayed as individualized, autonomous consumers. Over this time period, the desire for consumer products becomes figured by industry observers and researchers as a mode of children's "self expression.'The analytic isolation of "the child" in the persona of a "consumer" authorizes a new morality for consumption by construing children's desire for goods as preexistent and thus natural.     

The exoskeleton generation – disability redux

From both ethical and scientific standpoints, disability is increasingly seen as a state within which a person is both entitled to be and capable of being remediated. Legal and ethical acceptance of disability has taken place at the same time as rapid scientific developments which present major tensions in how we understand disability and social inclusion. This article explores some of the implications of these developments.     

Where Are the Children's Experiences? Analysing Social and Cultural Exclusion in 'Special' and 'Mainstream' Schools

In this paper we employ ethnographic data to illustrate that disabled children encounter discriminatory notions of 'normality' and 'difference' in both 'special' and 'mainstream' schools, and that these experiences relate to both the structural forces in schools, and the everyday individual and cultural practices of adults and children. In contrast to much of the literature in the field, this paper examines the everyday life experiences of adults and disabled children from their own perspective. We highlight disabled children's own criticisms of 'special' and 'mainstream' schools to illustrate the fluid nature of disabled children's lives within educational settings. We argue that schools will be prevented from becoming fully inclusive until adults who control schools take account of children's views of specific educational processes and until educational policy makers adopt a more nuanced multi-level approach to inclusion. Children should be enabled to challenge the structural, cultural and individual conditions which create disability.     

Overprotection and lowered expectations of persons with disabilities: the unforeseen consequences

Lowered expectations and overprotection of the individual with a disability can cause lowered self esteem which can result in a life time of underachievement and failure to reach their full potential. Both lowered expectations and overprotection are forms of discrimination. Internalization of discrimination causes the person with a disability to believe that they are less capable than a person without a disability. Parents and care providers of children with disabilities may overprotect the child to shield them from harm; however this can actually cause more damage. Successful parenting skills are required to help children and adolescents develop a positive self concept and high self esteem. Guidelines have been developed to assist parents, educators and other professionals regarding the effects of overprotection and lowered expectations.     

Embracing the new disability rights paradigm: the importance of the Convention on the Rights of Persons with Disabilities

In 2008 the United Nations Convention on the Rights of Persons with Disabilities (CRPD) commenced operation. The CRPD has created a dynamic new disability rights paradigm that empowers disability people’s organizations and creates a new paradigm for disability scholars. This paper analyses the impact of the CRPD and provides practical guidance as to how this convention can be used to drive change. Prior to this convention, persons with disabilities were protected by a range of general human rights conventions. Despite receiving nominal protection under general human rights conventions, persons with disabilities have had many of their human rights denied to them. The CRPD goes further than merely re-stating rights. It creates a new rights discourse, empowers civil society and renders human rights more obtainable for person with disabilities than any time in history.     

A critique of arguments supporting disability avoidance

Many prominent bioethicists argue that positive consequences follow from avoiding disability in offspring by preconceptual, preimplantation or prenatal means. This paper critiques two variants of these positions: ‘Open future’ arguments that avoiding disability is in the interest of the persons who will be affected by it if born and ‘non‐person‐affecting’ claims that failures to avoid disability in offspring are wrong for reasons independent of their effect on affected offspring. Difficulties with both person‐affecting and non‐person‐affecting accounts are discussed in support of the charge that these arguments do not show that positive consequences follow from disability avoidance.     

Supported employment and job outcomes. Typicalness and other related variables

The purpose of this study is to improve supported employment programs analyzing the relationships between different variables involved in its development on job outcomes. One important variable is typicalness (understood as the degree to which the job of the person with a disability is similar in its different characteristics to that of co-workers without a disability). It also compares sheltered employment and supported employment in employment outcomes. The results showed more length of service in the job and salary for supported employment workers. As regards the developmental variables, time of external support, type of support, and adaptations are critical to get better outcomes. Finally, the need to finely balance the typicalness of the job and the characteristics of the worker involved is stressed.     

The problem with inspiration porn: a tentative definition and a provisional critique

The term ‘inspiration porn’ is associated with disability advocacy in general and the late activist and comedian Stella Young in particular. It has come into widespread usage over the last few years. I propose the following definition: ‘Inspiration porn is the representation of disability as a desirable but undesired characteristic, usually by showing impairment as a visually or symbolically distinct biophysical deficit in one person, a deficit that can and must be overcome through the display of physical prowess.’ Inspiration porn superficially appears linked only to medical model/personal tragedy framings of disability, but on closer inspection resonates strongly with the disability movement’s advocacy of empowerment and affirmation.     

Disability Discourses for Online Identities

Beneficial effects of the online medium have been reported for disabled people in terms of providing a 'levelling ground' where they can be treated on their merits as a person, rather than as a disabled person. If this occurs because impairment is invisible online, how then are disabled people managing disability disclosure within this social context? This paper addresses this issue discursively. Participants were recruited from various disability organisations in New Zealand and were invited to take part in an online interview. A 'choice to disclose' repertoire was identified and was organised around three key resources: relevance, anonymity and normality. Embedded within each resource is the idea that the presence or absence of impairment is constructed as a feature controlled by the individual. Positioning identity within a subjectivity removed from impairment was made possible through these resources and was valued by participants. Political implications associated with the absence of impairment are discussed.     

Vulnerability and disability: a citizenship perspective

This article discusses vulnerability and disability focusing on inclusion and citizenship, inspired by Martha Nussbaum’s capabilities approach and Martha Fineman’s vulnerability theory. A public speech held at the 200th anniversary of the Norwegian Constitution is used as an exemplary case. The speaker, a woman with Down syndrome, challenges the Norwegian politic of inclusion. By drawing on perspectives from Nussbaum and Fineman, the article argues that a political concept of the person must emphasize individuals as vulnerable together with a recognition of disability as inherent in humanity. Vulnerability and disability are equally important for building future societies characterized by non-discrimination and equal citizenship.     

Comparing Opinions of People with Developmental Disabilities and Significant Persons in their Lives Using the Individual Supports Identification System (ISIS)

Fifty-two people with developmental disabilities were interviewed using the Individual Supports Identification System (ISIS). This study reports on persons with developmental disabilities, served by the State of Washington Division of Developmental Disabilities, and includes persons whose onset of disability was prior to 18. To be eligible for services, an individual must have a disability that falls within one of the following categories: (1) mental retardation; (2) cerebral palsy; (3) epilepsy; (4) autism; and (5) other types of central nervous system impairment closely related to mental retardation. Interviews were conducted with two groups. The first comprised individuals with developmental disabilities and the second, significant persons in the life of each participant in the first group. A significant person was considered to be someone known by the individual with disabilities for more than 6 months, spending more time with him or her than others. In addition, the significant person must like the individual with disabilities, and have his or her best interests in mind. Seventy-five per cent of significant persons interviewed were parents. Significant persons also responded to a series of ISIS questions. Responses from the individual with disabilities and from the significant person in his or her life were compared in order to determine similarities and differences in perspective. Comparisons focus on issues pertaining to friends and relationships, living environment and daily care needs.     

Children's literature and child abuse

This article focuses on the use of children's literature in the treatment of child abuse, a method referred to as bibliotherapy. Appropriate children's books are described that can be used in this approach.     

'Disability' in a Nursing Curriculum

Disabled people report dissatisfaction with their contact with health professionals and their educational systems. This paper reports on a study into disability within a curriculum leading to initial professional nursing qualification. The 'case study' design involved collecting data from the curriculum document, from students via questionnaire, and a total of 16 semi-structured interviews with both students and teachers involved in delivering the curriculum. Disability appeared as the inequality of inequalities in the planning and delivery of this curriculum. Simulation was employed to teach about disability, yet there was little confidence that students emerged with the necessary skills to deal with a disabled person who happens to become a patient. There was some indication that nurses may be ready to adopt a more socially orientated view of disability. Such optimism remains tentative and there may be a long way to go before nurses play a key role in challenging discrimination.     

Technically disabled,ill for all practical purposes? Myalgic encephalopathy/chronic fatigue syndrome discourse in Norway

After decades of activism, theorization, and model building, disability remains an undesirable marker of individual identity. Under-reporting of disability on a global scale is at least partly attributable to the stigma attached to disabled identity. Another cause, however, may be the lack of fit between the concept and discourse of disability as they evolve in a political, legislative, and organizational context, and the discourse in which everyday experiences as a disabled person are treated. The article examines discourse about myalgic encephalopathy and chronic fatigue syndrome from the Norwegian public sphere, and discusses the relationship between disability, chronic illness, and identity.     

The choice agenda in the Australian supported housing context: a timely reflection

The last 30 years has seen significant developments in the Australian housing sector for people with disabilities. Despite much change in the sector, and advancements in disability services, the range of current supported housing options for younger Australian adults with a neurological disability remains vastly under-developed. This is despite a widely accepted and endorsed recognition that, as is the general population, people with all forms of disability have a right to housing of their choice. This paper presents a timely critique of the key actions made by the Australian disability and housing sectors and subsequently proposes a more informed approach to supported housing design and development: one that is based on a comprehensive understanding of consumer housing priorities and preferences, and is conducive to a person’s biopsychosocial health.     

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.     

The Social Experiences of Children with Disability and the Influence of Environment: a framework for intervention

This paper explores the influence of environment on the quality of social experiences of children with disability in Sydney, Australia. The social experiences of four children with fragile X syndrome were described using ethnographic methods that included participant observation at 'special' and regular schools and in-depth interviews with parents, teachers and occupational therapists. An environmental perspective is presented here to complement existing individualist perspectives that address the social problems faced by children with disability. The environmental perspective involves (i) perceptions of disability, (ii) the child's family (relations, advocacy, encouragement, education, identity creation, dependence and separation), and (iii) the child's school (physical environment, other children, principal, teachers, therapists, policy and ethos). The paper serves as a basic framework to be adapted in further research and practice into the environmental influence of children's social experiences.