Stars are not Born: An Interpretive Approach to the Politics of Disability

The politics of disability are usually interpreted as attempts to influence government policy in the direction of reducing the negative effects of impairment. This paper enlarges that conventional notion to include attention to how the disabled subject is produced by the discursive practices within which disability is administered.

A summary of epistemological perspectives represented by contemporary social thought dealing with disability opens the discussion. Foucault's work is presented as the basis for interpreting recent social science literature on disability from a viewpoint which is sensitive to variations in epistemological presuppositions in that literature and to the political implications of each mode of research for the administration and treatment of disability.

A concluding section contains speculation on forms of political action which are relevant to the politics of disability at the constitutive level.     

Young Carers: challenging the facts and politics of research into children and caring

This paper critically reviews existing research on young carers. I argue that our knowledge of what young carers do and how they differ from other children, is extremely limited. Without this information, practice recommendations will be based on guesswork and prejudice. I argue that the existing literature pays lip service to the support, or lack of it, that disabled people need to empower them as parents. In this context, I also review research into the relationship between disability and parenting. Research has tended to involve the search for the negative impact of an adult's disability on a child's growth, intelligence and adjustment. This has therefore told us little about how parental disability affects the domestic and caring tasks of children. There is a conceptual hole in the middle of our existing awareness about caring and childhood, with which future research must attempt to grapple.     

Support and Access in Sports and Leisure Provision

This paper will look at different ways of enabling people with learning difficulties to engage in leisure opportunities: the Support Model and the Access Model. These models will be put in their social context and then critiqued.

The support model will be be contextualised in the theory of normalisation, access in disability theory. The support worker role will be shown to be useful in motivating people with learning difficlties into new activities, as well as having a protecting element, and unwittingly, disguise the level of discrimination people with learning difficulties are subject to.

The access worker role will be shown to have strengths in understanding discrimi nation. With this analysis, it has the potential to dismantle disabling practices. However, the needs of people with learning difficulties have ramifications for disability theory. In practice, that means that ideas of self-advocacy need to be taken on board.

Through interviews with sports personnel, social workers and people with learning difficulties, the implications of creating fully comprehensive access will be examined. I will conclude that both effective support and comprehensive access must be in place before people with learning difficulties are able to make a meaningful choice as to how they are enabled to participate in sports. It is only at that point of choice that the two models become complementary rather than competing discourses of provision.     

Parent-child relationships between Korean American adolescents and their parents

This cross-sectional correlational study examined the association between Korean American adolescents' and their parents' reports of parent-child relationships. A total of 61 Korean American families completed a questionnaire assessing parental knowledge, parental/filial self-efficacy, parent-child communication, and parent-child conflicts. T tests, Pearson's correlations, a scatter diagram, and bivariate regression were used to analyze the data. Both Korean American adolescents and their parents reported that fathers were less knowledgeable about their child's school life and less likely to communicate with their children than were mothers. Fathers reported a significantly lower level of parental self-efficacy than mothers, and adolescents also reported a significantly higher level of filial self-efficacy in mother-child relationships than in father-child relationships. Positive correlations between parents' and adolescents' reports of parent-child relationships were observed. These findings indicated a need for parent education programs or counseling services for Korean American parents of adolescents, particularly fathers with inadequate parental skills and limited communication with their children.     

Parent-perceived Attitudes of Professionals: Implications for Service Providers

While parents' reactions to a diagnosis of disability in their child have been well documented, less is known of parents' reactions to the professionals who provide the diagnostic and support services used by parents. This study identified four major parameters within which the attitudes of professionals are perceived by parents of children/teenagers diagnosed as intellectually disabled. Comments of the 131 mothers and fathers interviewed helped to shed light on what they have expected of service providers, and suggest adjustments that may need to be made by professionals to the attitudes they convey in interaction with parents.     

Judicial bias in adjudicating the adoption of minors in Israel

The decision-making process of professionals involved in child placement is prone to judgmental bias, since there is no consensual model for evaluating the key concepts of “child's best interests” and “parental capability.” Several hypotheses regarding judicial bias were assumed, with emphasis on the social marginalization of the parents (operationally measured by three indicators: parents' lack of economic means, parents' social deviance, and a family history of previous adoptions and/or out-of-home placement) affecting the judge's perception of parental dangerousness, the adoption decision and its legal reasoning. Findings from a sample of 231 court decisions of compulsory adoption indicated that operational measurements of “social marginalization of the parents” were correlated and could predict the judge's perception of parental dangerousness, his decision of compulsory adoption and his reference to family rights. The legal disadvantage of socially marginalized parents was discussed from various perspectives.     

Refocusing on the Parent: What are the social issues of concern for parents of disabled children?

A questionnaire was constructed to analyse the efficacy of service provision for disabled children from the parents' perspective, as well as the needs and issues pertinent to parents (Middleton, 1998, 1992). The familial and personal data identified deep parental concerns and fears regarding professional attitudes and dominance, neglect of parental knowledge, lack of counselling and therapy, coping in the future, support, and the child's aesthetics and body (Brown, 1998). Results indicate that professionals continue to control the parent-professional relationship, assuming the role of 'expert', rather than integrating and consulting parents in a negotiate decision-making process. Parental needs and issues are prescribed by professionals (Oliver & Barnes, 1998), thus marginalising and disempowering the parent (Appleton & Minchom 1991), and reducing opportunity for parental involvement and participation in an equitable 'partnership' relationship with professionals (Dale, 1996).     

Effects of parental involvement in treatment on the anxiety of children with cystic fibrosis

Forty-four cystic fibrosis children were administered the State-Trait Anxiety Inventory for Children A-Trait Scale. Children receiving one parent treatment were found to be significantly more anxious than subjects whose parents were both involved. Factors found associated with parental involvement included the father's education, parents' perceived anxiety and the CF child's school attendance.     

Tandem treatment: A model for work with parents of troubled children

The complexity of individual work with parents whose children are in treatment because of their difficulties is explicated. An exploratory study of 15 mothers' experiences with such treatment is reported. The focus of the study was on parents' expectations, their relationships with their own and their child's clinician, the process of treatment and termination. The findings are integrated with relevant literature and clinical experience to provide a tandem treatment model in which emphasis is placed on clarifying parents' expectations, working with parents' individual issues as well as their role as parents, and focusing first on their children's problems, then gradually moving to the parents' concerns about their own problems.Ms. Staver is a retired Chief Psychiatric Social Worker, Judge Baker Guidance Center     

Child abduction, parents' distress, and social support

This study examines how parents of family and nonfamily abducted children cope with stress due to the disappearance of their child. The results show that all parents experience distress, regardless of whether it was a family or nonfamily abduction. Associated with parental distress are factors such as prior family stress, age of the child, recovery status of the child, and measures of social support. More specifically, helpful support from friends has been found to decrease parents' levels of distress, whereas unhelpful support from family and attorneys may increase distress. Mothers and fathers responded to event circumstances and social support in significantly different ways. The need for further research is discussed in the study's conclusions.     

Parent Management Training, Relationships with Agency Staff, and Child Mental Health: Urban Foster Parents' Perspectives

Many foster parents are ill prepared to meet the behavioral needs of children placed in their homes. Research suggests they lack training in evidence-based behavioral interventions and feel unsupported by child welfare professionals. Given the complex needs of foster children and increased rates of placement disruption for foster children with behavior problems, implementation of effective interventions is essential. However, little is known about foster parents' receptivity to these types of interventions. In this qualitative study, we examine urban foster parents' perceptions of the specific elements of parent management training (PMT), an evidence-based treatment for disruptive behaviors that teaches parents to improve desired behaviors and decrease oppositional behaviors by rewarding positive behaviors (positive reinforcement) and responding to negative behaviors with mild, consistent punishments such as timeout or a privilege removal. We present data from four focus groups (N = 38). While the questions focused on parent's perceptions of PMT, responses often related to parent interactions with agency staff. Four strong themes emerged from the data. First, foster parents discussed a need for more support and training in how to address children's behaviors, but also had concerns that some PMT discipline techniques would be ineffective based on their past experiences with foster children. Second, they described how staff communication skills and allegations of child abuse could affect parents' motivation to continue fostering. Third, they expressed a need for more detailed information about children's histories and visits with biological families as the lack of information contributed to difficulty in meeting foster children's needs. They suggested that joint training of foster parents and staff in the intervention could improve their ability to work together to support the child's positive behaviors. Finally, parents reported little involvement in child mental health services and doubted the effectiveness of the mental health services their foster children received.     

The Government of Disability: economics and power in welfare and work

The term government of disability refers to the ways that the lived experiences of people with accredited impairments are contextualised by economics and power in welfare and work. This paper explores how far a multiple perspective that develops a framework of the government of disability and the ontological ambiguity of impairment can take us towards contemporary understandings of disability, impairment and change in the UK.

The term the ontological ambiguity of impairment describes the ways that understandings of impairment have become more ambiguous, contributing to greater insecurities and fragmentation because of key changes in the government of disability. However, I argue that wider explanations of economic and power relationships are also necessary to develop a critical perspective of the contemporary government of disability, economics, and power in welfare and work.     

No African renaissance without disabled women: a communal approach to human development in Cape Town South Africa

The African Renaissance is upon us. Those who have eyes to see, let them see.

Disabled women who live in wooden shacks in the peri-urban areas of Khayelitsha in Cape Town, South Africa, participated in storytelling workshops over a two-and-a-half-year period. They shared experiences of what helped or hindered their social and economic development since becoming disabled. The workshops were part of a participatory action research (PAR) study of the Division of Occupational Therapy, University of Cape Town, together with Disabled People South Africa (DPSA) and the Zanempilo Health Trust [formerly South African Christian Leadership Assembly (SACLA) Primary Health Care Project].

The findings revealed the struggles and sadness, as well as the strengths and spirit that the women experienced within their every day context at an individual, family and community level. The women spoke strongly about meeting physical, emotional, and spiritual needs (human development) as the means to social and economic development.

The discussion reflects on the many paradoxes of disability encapsulated in the essence of interdependence of Ubuntu. Three themes discussed are building emotional resourcefulness: nurturing children and families in disability issues; and renewing spirituality and Ubuntu in disability and development programmes. In conclusion, managing the paradoxes of disability, the creation of a new individual and collective identity, and the capacity to change are proposed as the way forward.     

Parents of Children with Attention Deficit/Hyperactivity Disorder: A Meta-Synthesis,Part I

In 2011 6.4 million children in the United States ages four to 17 years had a diagnosis of Attention-deficit/hyperactivity disorder (ADHD). Quantitative studies have indicated that parenting stress for parents of children diagnosed with ADHD is high. This meta-synthesis compiled and analyzed a systematic review of the qualitative studies of parents’ lived experience of having a child with ADHD. Searches in online scholarly databases yielded an initial 1217 hits, which were narrowed down to seventy-three studies that met the criteria. A “meta-ethnography” framework was used for the synthesis. One major finding involved the emotional burden of caring for a child with ADHD. Parents struggled with a variety of intense and painful emotions as they attempted to manage family routines. Disciplining children only worked in a limited way and took constant effort throughout the day. The challenges of parenting spilled into other areas of the parents’ lives, such as their health, psychological, marital, and occupational functioning. Implications for practitioners are discussed, including the need to validate parental stress and the difficulty of applying behavioral management strategies with their children, the need for increased support of partner relationships, and the need to connect parents with support to prevent poorer outcomes for the child.     

Territorial Isolation and Physical Deformity: Israeli parents' reaction to disabled children

This paper presents and analyses three case studies portraying the attitudes and reactions of Israeli parents towards their deformed children. The research method employed was participant observation in homes, combined with in-depth interviews. It was found that parents tended to isolate their handicapped children from family territories in those contexts in which the child was defined as a 'non-person'. This pattern was not affected by the parents' socioeconomic status, or by their ethnic and religious background.     

Disablement, Disability and the Nigerian Society

This paper seeks to examine the question of disability in developing countries, particularly Nigeria. Most of the diseases causing disabilities are preventable. Many of these are infections which could be prevented with medical care.

The perception of handicapping conditions by most Nigerians it is argued, are greatly influenced by myth and superstition, which in turn influences the negative attitude of people towards disabled people.

The lack of medical facilities has contributed to the spread of common diseases which otherwise would have been controlled or eradicated, as is the case in developed countries like Britain and America.

Rights of disabled people are emphasized. This includes the right to an education and the right of access into buildings. Fortunately, there are moves towards the attainment of these basic rights in various sectors, particularly the University of Jos which has the largest concentration of blind students in one single institution of higher learning.     

Identifying the needs of parents with learning disabilities: A review

Despite the success of some programmes in raising the parental competency of parents who have learning disabilities, many services are still providing only minimal support to such families, often following crisis intervention. Recent legislative changes within the UK have meant that statutory services are now required to adopt a preventative approach to children and families in need. A review of the literature reveals that children of learning-disabled parents are particularly vulnerable to abuse/neglect and removal from their natural family. This article addresses the difficulties that many clinicians currently experience in the early identification of parents who have learning disabilities. It also emphasizes the need for a systematic approach in the assessment of these parents prior to the implementation of parental teaching programmes.     

'I Value What You have to Say'. Seeking the Perspective of Children with a Disability, Not Just their Parents

The UN Convention on the Rights of the Child acknowledges the right for children to express opinions about issues affecting them and the right to have these views heard (Davis, 1998). There has been an increase in the number of international studies including children as informants in research, but there is noticeably less published research including children as informants in Australia if they have a disability. Rather, there has been a reliance on parents/carers for insight into their child's experiences. In this article we present the results of a qualitative pilot study where we interviewed parents and their children who have cerebral palsy about their perceptions and experiences of communication in the medical consultation. We found that the views of children and parents were different, further reiterating the need to seek the perceptions of children as well as their parents.     

A Reinterpretation of Parental Monitoring in Longitudinal Perspective

A commonly used measure of parental monitoring is parents' knowledge of adolescents' daily activities. This measure has been criticized on the grounds that parents get more knowledge about teenagers' daily activities through willing youth disclosure than through their own active monitoring efforts, but this claim was based on cross-sectional data. In the present study, we reexamine this claim with longitudinal data over 2 years from 938 seventh and eighth graders and their parents. Youth disclosure was a significant longitudinal predictor of parental knowledge in single- and cross-rater models. Neither measure of parents' monitoring efforts—control or solicitation—was a significant predictor. In analyses involving delinquency, parental monitoring efforts did not predict changes in delinquency over time, but youth disclosure did. We conclude that because knowledge measures do not seem to represent parental monitoring efforts, the conclusions from studies using these measures should be reinterpreted.     

The enforcement of normalcy in schools and the disablement of families: unpacking master narratives on parental denial

The notion that some parents may be ‘in denial’ is a pervasive theme in dominant discourses on families of children with disabilities. In this analytic essay, I deconstruct cultural and institutional master narratives on parental denial and discuss their role in the marginalization of students with disabilities in schools. I argue that discourses on parental denial privilege the perspectives of those in positions of power and control, leave the practice of ability-based segregation in schools unexamined, and discredit agency among families. Additionally, drawing from existing narrative-based research, I explore alternative interpretations of parents’ responses to their children’s differences, situating these in the framework of critical disability studies.