Weaving yarns : the lived experience of Indigenous Australians with adult-onset disability in Brisbane

Indigenous Australians have lower levels of health than mainstream Australians and (as far as statistics are able to indicate) higher levels of disability, yet there is little information on Indigenous social and cultural constructions of disability or the Indigenous experience of disability. This research seeks to address these gaps by using an ethnographic approach, couched within a critical medical anthropology (CMA) framework and using the “three bodies” approach, to study the lived experience of urban Indigenous people with an adult-onset disability. The research approach takes account of the debate about the legitimacy of research into Indigenous Australians, Foucault‟s governmentality, and the arguments for different models of disability. The possibility of a cultural model of disability is raised. After a series of initial interviews with contacts who were primarily service providers, more detailed ethnographic research was conducted with three Indigenous women in their homes and with four groups of Indigenous women and men at an Indigenous respite centre. The research involved multiple visits over a period extending more than two years, and the establishment of relationships with all participants. An iterative inductive approach utilising constant comparison (i.e. a form of grounded theory) was adopted, enabling the generation and testing of working hypotheses. The findings point to the lack of an Indigenous construct of disability, related to the holistic construction of health among Indigenous Australians. Shame emerges as a factor which affects the way that Indigenous Australians respond to disability, and which operates in apparent contradiction to expectations of community support. Aspects of shame relate to governmentality, suggesting that self-disciplinary mechanisms have been taken up and support the more obvious exertion of government power. A key finding is the strength of Indigenous identity above and beyond other forms of identification, e.g. as a person with a disability, expressed in forms of resistance by individuals and service providers to the categories and procedures of the mainstream. The implications of a holistic construction of health are discussed in relation to the use of CMA, the interpretation of the “three bodies”, governmentality and resistance. The explanatory value of the concept of sympatricity is discussed, as is the potential value of a cultural model of disability which takes into account the cultural politics of a defiant Indigenous identity.

The lived experience of families living with spinal cord disability in Northeast Thailand

The experience of disability in the global South remains relatively underreported in spite of the greater focus on disability as both an impediment to development and frequently as a result of development. This article reports a qualitative study using ethnographic techniques undertaken in the province of Khon Kaen in Northeast Thailand. The primary participants were men who had experienced a severe spinal cord injury at a time when they were breadwinners, a role which is significant in the context of a modernising state that is an active participant in a global economy. The experiences, constructions and beliefs of these men, their family carers, and other informants illustrate the complex ways in which social and cultural factors interact with the opportunities, challenges and constraints of transition to modernity. The findings, interpreted according to the 'three bodies' approach, illustrate the intersection of colonising effects, governmentality and resistance, and embodied experience in a cultural context.

Wellness in older adults

Understanding perception of wellness in older adults is a question to be understood against the backdrop of concerns about whether global ageing and the ‘bulge’ of ageing baby boomers will increase health care cost beyond what modern economies can deal with. Older adults who age in a healthy way and who take responsibility for their own health offer a positive alternative and change the perception that older adults are a burden on their society’s health system. The concept of successful ageing introduced by Rowe and Kahn (1987; 1997) suggested that older adults age successfully if they avoid disease and disability, maintain high cognitive and physical functioning and remain actively engaged with life. This concept, however, did not reflect older adults’ own perceptions of what constitutes successful ageing or how perceptions of wellness or health-related quality of life influenced the older adult’s understanding of his or her own health and ageing. A research project was designed to examine older adults’ perceptions of wellness in order to gain an understanding of the factors that influence perception of their own wellness. Specifically, the research wanted to explore two aspects: whether belonging to a unique organisation, in this instance a Returned Services Club, influenced perceptions of wellness; and whether there are significant gender differences for the perception of wellness. A mixed method project with two consecutive studies was designed to answer these questions: a quantitative survey of members of a Returned Services Club and of the surrounding community in Queensland, Australia, and a qualitative study conducting focus groups to explore findings of the survey. The results of the survey were used to determine the composition of the focus groups. The participants for the first study, (N=257), community living adults 65 years and older, were chosen from the membership role of a Returned Services Club or recruited by personal approach from the community surrounding the Services Club. Participants completed a survey that consisted of a perception of wellness instrument, a health-related quality of life instrument, and questions on morbidities, modifiable life style factors and demographics. Data analysis found that a number of individual factors influenced perception of wellness and health-related quality of life. Positive influences were independent mobility, exercise and gambling at non-hazardous levels, and negative influences were hearing loss, memory problems, chronic disease and being single. Membership of the Services Club did not contribute to perception of wellness beyond being a member of a social group. While there may have been an expectation that members of an organisation that is traditionally associated with high alcohol use and problematic gambling may have lower perceptions of wellness, this study suggested that the negative influences may have been counteracted by the positive effects of social interaction, thus having neither negative nor positive influences on perception of wellness. There were significant differences in perception of wellness and in health-related quality of life for women and men. The most significant difference was for women aged 85-90 who had significantly lower scores for perception of wellness than men or than any other age group. This result was the impetus for conducting focus groups with adults aged 85-90 years of age. Focus groups were conducted with 24 women and four men aged 85-90 to explore the survey findings for this age group. Results from the focus groups indicated that for older adults perception of wellness was a multidimensional construct of more complexity than indicated by the survey instrument. Elite older women (women over 85 years of age) related their perception of wellness to their ability to do what they wanted to do, and what they wanted to do significantly more than anything else, was to stay connected to family, friends and the community to which they belonged. From the focus group results it appeared that elite older women identified with the three elements of successful ageing – low incidence of disability and disease, high physical and cognitive functioning, and active engagement with life – but not in a flat structure. It appears that for elite older women good physical and mental health function to enable social connectedness. It is the elements of health that impact on the ability to do what they wanted to do that were identified as key factors: independent mobility, hearing and memory - factors that impact on the ability to interact socially. These elements were only identified when they impacted on the person’s ability to do what they wanted to do, for example mobility problems that were managed were not considered a problem. The study also revealed that older women use selection, optimisation and compensation to meet their goal of staying socially connected. The shopping centre was a key factor in this goal and older women used shopping centres to stay connected to the community and for exercise as well as shopping. Personal and public safety and other environmental concerns were viewed in the same context of enabling or disabling social connectedness. This suggested that for elite older women the model of successful ageing was hierarchical rather than flat, with social connectedness at the top, supported by cognitive functioning and good physical and mental health. In conclusion, this research revealed that perception of wellness in older adults is a complex, multidimensional construct. For older adults good health is related to social connectedness and is not a goal in itself. Health professionals and the community at large have a responsibility to take into account the ability of the older adult to stay socially connected to their community and to enable this, if the goal is to keep older adults healthy for as long as possible. Maintaining or improving perception of wellness in older adults will require a broad biopsychosocial approach that utilises findings such as older adults’ use of shopping centres for non-shopping purposes, concerns about personal and environmental safety and supporting older adults to maintain or improve their social connectedness to their communities.

Disability, deinstitutionalisation and discourse : an analysis of institutional reform policies in Queensland, 1994-1996

The closure of large institutions for people with intellectual disability and the subsequent shift to community living has been a feature of social policies in most western democracies for more than two decades. While the move from congregated settings to homes in the community has been heralded as a positive and desirable strategy, deinstitutionalisation has continued to be a controversial policy and practice. This research critically analyses the implementation of a deinstitutionalisation policy called Institutional Reform in the state of Queensland from May 1994 until it was dismantled under a new government in the middle of 1996. A trajectory study of the policy from early conceptualisation through its development, implementation and final extinction was undertaken. Several methods were utilised in the research including the textual analyis of policy documents, discussion papers and newspaper articles, interviews with stakeholders and participant observation. The research draws on theories of discourse and focuses on how discourses of disability shape policy and practice. The thesis outlines a number of implications for policy implementation more generally as well as for disability services. In particular, the theoretical framework builds on Fulcher's (1989) disabling discourses - medical, charity, lay and rights - and identifies two additional discourses of economics and inclusion. The thesis argues that competing disability discourses operated in powerful ways to shape the implementation of the policy and illustrates how older discourses based on fear and prejudice were promoted to positions of dominance and power.

The effectiveness of a short-term group music therapy intervention for parents who have a child with a disability

The relationship between the quality of parent-child interactions and positive child developmental trajectories is well established (Guralnick, 2006; Shonkoff & Meissels, 2000; Zubrick et al., 2008). However, a range of parental, family, and socio-economic factors can pose risks to parents’ capacity to participate in quality interactions with their children. In particular, families with a child with a disability have been found to have higher levels of parenting stress, and are more likely to experience economic disadvantage, as well as social isolation. The importance of early interventions to promote positive parenting and child development for these families is widely recognised (Shonkoff & Meissels, 2000). However, to date, there is a lack of evidence about the effectiveness of early parenting programs for families who have a young child with a disability. This thesis investigates the impact of a music therapy parenting program, Sing & Grow, on 201 parent-child dyads who attended programs specifically targeted to parents who had a young child with a disability. Sing & Grow is an Australian national early parenting intervention funded by the Australian Government Department of Families, Housing, Community Services and Indigenous Affairs and delivered by Playgroup Queensland. It is designed and delivered by Registered Music Therapists for families with children aged from birth to three years. It aims to improve parenting skills and confidence, improve family functioning (positive parent-child interactions), enhance child development, and provide social networking opportunities to socially isolated families. The intervention targets a range of families in circumstances that have the potential to impact negatively on family functioning. This thesis uses data from the National Evaluation Study of Sing & Grow from programs which were targeted at families who had a young child with a disability. Three studies were conducted to address the objectives of this thesis. Study 1 examines the effects of the Sing & Grow intervention on parent reported pre and post parent mental health, parenting confidence, parenting skills, and child development, and other parent reported outcomes including social support, use of intervention resources, satisfaction with the intervention and perceived benefits of and barriers to participation. Significant improvements from pre to post were found for parent mental health and parent reported child communication and social skills, along with evidence that parents were very satisfied with the program and that it brought social benefits to families. Study 2 explored the pre to post effects of the intervention on children’s developmental skills and parent-child interactions using observational ratings made by clinicians. Significant pre to post improvements were found for parenting sensitivity, parental engagement with child and acceptance of child as well as for child responsiveness to parent, interest, and participation in the intervention, and social skills. Study 3 examined the nature of child and family characteristics that predicted better outcomes for families while taking account of the level of participation in the program. An overall outcome index was calculated and served as the dependent variable in a logistic regression analysis. Families who attended six or more sessions and mothers who had not completed high school were more likely to have higher outcome scores at post intervention than those who attended fewer sessions and those with more educated mothers respectively. The findings of this research indicate that the intervention had a positive impact on participants’ mental health, parenting behaviours and child development and that level of attendance was associated with better outcomes. There was also evidence that the program reached its target of high risk families (i.e., families in which mothers had lower educational levels) and that for these families better outcomes were achieved. There were also indications that the program was accessible and highly regarded by families and that it promoted social connections for participants. A theoretical model of how the intervention is currently working for families is proposed to explain the connections between early parenting, child development and maternal wellbeing. However, more research is required to further elucidate the mechanisms by which the intervention creates change for families. This research presents promising evidence that a short term group music therapy program can elicit important therapeutic benefits for families who have a child with a disability.

Hearing impairment affects older people’s ability to drive in the presence of distracters

OBJECTIVES: To investigate the effects of hearing impairment and distractibility on older people's driving ability, assessed under real-world conditions. DESIGN: Experimental cross-sectional study. SETTING: University laboratory setting and an on-road driving test. PARTICIPANTS: One hundred seven community-living adults aged 62 to 88. Fifty-five percent had normal hearing, 26% had a mild hearing impairment, and 19% had a moderate or greater impairment. ---------- MEASUREMENTS: Hearing was assessed using objective impairment measures (pure-tone audiometry, speech perception testing) and a self-report measure (Hearing Handicap Inventory for the Elderly). Driving was assessed on a closed road circuit under three conditions: no distracters, auditory distracters, and visual distracters. RESULTS: There was a significant interaction between hearing impairment and distracters, such that people with moderate to severe hearing impairment had significantly poorer driving performance in the presence of distracters than those with normal or mild hearing impairment. CONCLUSION: Older adults with poor hearing have greater difficulty with driving in the presence of distracters than older adults with good hearing.

(Dia)logics of difference : disability, performance & spectatorship

In this paper I examine the way artists with disabilities use performances in public spaces to encourage people to reflect on their own contribution to the construction of publics, or counter-publics, during and after the moment of encounter. I focus on Liz Crow’s Resistance on the Plinth. This is the title Crow gave her performance on the Forth Plinth in Trafalgar Square as part of Antony Gormley’s One and Other project in 2009. Described as a public art project presenting a portrait of the U.K., Gormley’s One and Other gave 2400 people selected at random via a lottery the chance to do whatever they chose for an hour on the vacant Forth Plinth in Trafalgar Square. In her hour, Crow chose to present herself in a Nazi uniform, in her wheelchair. In this paper, I discuss how Crow’s performance used a counterposition of images – the Nazi uniform, associated with eugenics and a desire to eliminate people who do not accord with the Arayan ‘norm’, counterposed with her wheelchair – to encourage passersby to “stop, look, think.” I examine how Crow used this counterposition to prevent passersby from attributing a single, stable, monologic meaning to the image – forestalling the risk that passersby would read the image as a Nazi on the Plinth – and instead draw passersby into a dialogue in which the impossibility of reconciling the contradictory images, ideologies and cultural logics Crow embodied encouraged people to continue thinking and talking about these cultural logics during and after the encounter.

The role of informal networks in providing effective work opportunities for people with an intellectual disability

Being in paid employment is socially valued, and is linked to health, financial security and time use. Issues arising from a lack of occupational choice and control, and from diminished role partnerships are particularly problematic in the lives of people with an intellectual disability. Informal support networks are shown to influence work opportunities for people without disabilities, but their impact on the work experiences of people with disability has not been thoroughly explored. The experience of 'work' and preparation for work was explored with a group of four people with an intellectual disability (the participants) and the key members of their informal support networks (network members) in New South Wales, Australia. Network members and participants were interviewed and participant observations of work and other activities were undertaken. Data analysis included open, conceptual and thematic coding. Data analysis software assisted in managing the large datasets across multiple team members. The insight and actions of network members created and sustained the employment and support opportunities that effectively matched the needs and interests of the participants. Recommendations for future research are outlined.

Nonverbal Learning Disability explained : the link to shunted hydrocephalus

A Nonverbal Learning Disability is believed to be caused by damage, disorder or destruction of neuronal white matter in the brain’s right hemisphere and may be seen in persons experiencing a wide range of neurological diseases such as hydrocephalus and other types of brain injury (Harnadek & Rourke 1994). This article probes the relationship between shunted hydrocephalus and Nonverbal Learning Disability. Description of hydrocephalus and intelligence associated with hydrocephalus concludes with explication of the ‘final common pathway’ that links residual damage caused by the hydrocephalic condition to a Nonverbal Learning Disability (Rourke & Del Dotto 1994, p. 37). The paper seeks to assist teachers, teacher aides, psychologists, guidance officers, support workers, parents and disability service providers whose role is to understand and advocate for individuals with shunted hydrocephalus and spina bifida.

The effectiveness of a short-term group music therapy intervention for parents who have a child with a disability

Background The relationship between positive parent-child interactions and optimal child development is well established. Families with a child with a disability may face additional challenges to establishing positive parent-child relationships. There are limited studies addressing the effectiveness of interventions which seek to address these issues with parents and young children with a disability. In particular, prior studies of music therapy with this group have been limited by small sample sizes and the use of measures of limited reliability and validity. Objective This study investigates the effectiveness of a short-term group music therapy intervention for parents who have a child with a disability and explores the factors associated with higher outcomes for participating families. Methods The participants were 201 mother-child dyads, where the child had a disability. Pre and post intervention parental questionnaires and clinician observation measures were taken on a range of parental wellbeing, parenting behaviours and child developmental factors. Descriptive data, t-tests for repeated measures and a predictive model tested via logistic regression are presented. Results Significant improvements pre to post were found for parent mental health, child communication and social skills, parenting sensitivity, parental engagement with child and acceptance of child, child responsiveness to parent, and child interest and participation in program activities. There was also evidence that parents were very satisfied with the program and that it brought social benefits to families. Reliable change on six or more indicators of parent or child functioning was predicted by attendance and parent education. Conclusions This study provides positive evidence for the effectiveness of group music therapy in promoting improved parental mental health, positive parenting and key child developmental areas. Whilst several limitations are discussed, the study does address some of the gaps in the music therapy evidence base in this area.