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Online collective identities for autism: The perspective of Brazilian parents

ANTUNES, Debora
DHOEST, Alexander
2018

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The importance of online communities for parents of people with disabilities has been discussed by many scholars in the fields of Digital and Disability Studies, showing, for instance, the importance of social support and the formation of social ties. In order to contribute to this scholarship, this paper explores how collective identity models are built and circulated by parents of autistic people in one of the biggest Brazilian online communities about the subject, ‘Sou autista… conheça o meu mundo’ (I am autistic…get to know my world). The results were obtained through a digital ethnography, based on participant observation and an exchange of information with the members of the community studied. Based on the data collected, the study concludes that the collective identity models that circulate in this community can be grouped into legitimising, resistant, and project identities, as postulated by Castells (2010). The different views reflect how parents see autism and represent the ways it is treated in Brazilian society.

 

Disability and the Global South, 2018 Vol.5, No. 1

The long-term impact of wheelchair delivery on the lives of people with disabilities in three countries of the world

SHORE, Susan
2017

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Background: Lack of access to mobility for people with disabilities, particularly in less- resourced settings, continues to be widespread. Despite challenges to wheelchair delivery, the benefits to health, employment, social integration and life satisfaction are apparent.


Objectives: Previous studies have explored the impact of receiving a wheelchair on the lives of the users through cross-sectional or short-term longitudinal analysis. The current study was undertaken to evaluate whether previously reported changes were sustained after 30 months of use, and whether results varied between two differing models of a wheelchair.


Method: One hundred and ninety-one subjects from Peru, Uganda and Vietnam received one of two models of wheelchair provided by the Free Wheelchair Mission. Using interviews to record survey results, data were collected at the time the wheelchair was received and following 12 and 30 months of use. Variables of overall health, employment, income and travel were explored through non-parametric analysis.


Results: There was a significant improvement in overall health and distance travelled after 12 months, but these changes were no longer significant by 30 months (Friedman test for overall change, p = 0.000). Employment status showed a small but significant increase at 12 and 30 months (Cochran’s Q, p = 0.000). Reported income increased slowly, becoming significantly different at 30 months (Friedman test, p = 0.033). There was no association between the model of wheelchair received and the incidence of pressure ulcers, pain or maintenance required. There was higher satisfaction with the GEN_2 wheelchair at 12 months (p = 0.004), but this difference was not apparent by 30 months. Overall wheelchair satisfaction and maintenance levels were favourable.


Conclusion: While overall health status, and distance travelled into the community fluctuated over time, receipt of one of two models of a wheelchair in less-resourced settings of the world appears to have a positive sustained impact on employment and income. Further investigations should be carried out to confirm these results and explore the factors responsible for fluctuating variables. This study affirms the importance of long-term follow-up of outcomes associated with wheelchair distribution in less-resourced environments.

School toilets: queer, disabled bodies and gendered lessons of embodiment

SLATER, Jenny
JONES, Charlotte
PROCTER, Lisa
2016

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In this paper we argue that school toilets function as one civilising site [Elias, 1978. The Civilising Process. Oxford: Blackwell] in which children learn that disabled and queer bodies are out of place. This paper is the first to offer queer and crip perspectives on school toilets. The small body of existing school toilet literature generally works from a normative position which implicitly perpetuates dominant and oppressive ideals. We draw on data from Around the Toilet, a collaborative research project with queer, trans and disabled people (aroundthetoilet.wordpress.com) to critically interrogate this work. In doing this we consider ‘toilet training’ as a form of ‘civilisation’, that teaches lessons around identity, embodiment and ab/normal ways of being in the world. Furthermore, we show that ‘toilet training’ continues into adulthood, albeit in ways that are less easily identifiable than in the early years. We therefore call for a more critical, inclusive, and transformative approach to school toilet research.

Tackling sexual abuse of people with disabilities - report. What to do in the case of rape or sexual assault (A guide for vctims, their families and friends) - booklet

ADVANTAGE AFRICA
KIBWEZI DISABLED PERSONS ORGANISATION (KDPO)
INTERNATIONAL FOUNDATION OF APPLIED DISABILITY RESEARCH (FIRAH)
November 2016

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"The aim of the research was to investigate the social, cultural and institutional factors which contribute to the high incidence of sexual abuse of persons with disabilities in East Africa and to identify interventions which could change detrimental attitudes, beliefs and practices which perpetuate this high incidence. The study used a qualitative participatory action research approach and worked with local partner organisations and Ugandan and Kenyan field level researchers to collect data. Survivors of sexual abuse were not interviewed but instead the research investigated the understandings, beliefs and practices of a range of service providers and key responders who are involved in the prevention of and response to sexual abuse against persons with disabilities in their communities. Groups consulted included police, teachers, health-care workers, government administrators, faith and community organisations and traditional leaders, as well as persons with disabilities and their parents. Participatory workshops were run with a reference group of people with disabilities (with a range of impairments and experiences) and relevant specialists at the initial stage and during the participatory analysis process. After initial orientation and training the field researchers undertook a total of 52 individual interviews and 9 focus group discussions with a range of stakeholders". Powerpoint slides of the research findings and posters are also available.

 

The booklet is a simple guide written to support victims of sexual abuse and their families to know their rights and to understand what services are available to them. 

The Paralympic Games and the Promotion of the Rights of Persons with Disabilities

UN CHRONICLE
September 2016

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This article explores the effect of the paraolympic games on driving social inclusion and an understanding of disability and disability rights around the world. Highlighting the poor conditions before the Bejing games in 2008, the article explains how perceptions and awareness within society have changed. The article also highlighted the United Kingdom as a leader in the field of disability rights and equality thought protection of those rights. 

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

BROCCO, Giorgio
2015

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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 lit- tle knowledge of the (bio)medical explanations for albinism and tended to marginalize people with albinism. Framed within a wider moral discourse on ill- ness, 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.

Report of the Special Rapporteur on the rights of persons with disabilities (theme: the right of persons with disabilities to social protection)

DEVANDAS-AGUILAR, Catalina
August 2015

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'In the present report, the Special Rapporteur, Catalina Devandas-Aguilar, provides a study focusing on disability-inclusive social protection as a prerequisite for the universalization of social protection. She stresses that social protection is fundamental for achieving the social inclusion and active participation of persons with disabilities, and promoting their active citizenship. She also argues that to achieve disability-inclusive social protection, States must move away from traditional disability-welfare approaches towards embracing the innovative rights based model'

Towards an Inclusive Society in Cameroon: Understanding the Perceptions of Students in University of Yaounde II about Persons with Disabilities

Opoku, Maxwell Peprah
Badu, Eric
Moitui, oash Ntenga
2015

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Purpose: Disability cuts across every society and all spheres of life. For an inclusive society, it is important to understand people’s perceptions about persons with disabilities. However, there seems to be limited information, particularly about the perceptions of students who are the generation of future policy-makers. This study examines the perceptions of students in the University of Yaoundé II about persons with disabilities in Cameroon.

 

Methods: A cross sectional study design using quantitative methods was employed with a sample of students at the University of Yaoundé II. A questionnaire was used to gather information from 500 students selected by simple random sampling. The data analysis involved descriptive and inferential statistics at 95% CI.

 

Results: Among the participants, 51.8% were males, 89.2% were single and the average age was 24.9 years. Findings showed that 69.8% did not know about the actual population of persons with disabilities in Cameroon, though 14.6% had relatives with disabilities. None of the students perceived disability as a contagious condition, and 79.8% agreed that education had influenced their perceptions about persons with disabilities. Gender and education level had significant relationship with changes in perception (OR=1.8; p=0.01 and OR=1.91; p=0.04). However, 13.5% were unwilling to work with a person with disability in the future.

 

Conclusion: The findings suggest that issues of disability have not been taken into consideration in Cameroon. Therefore, there is the need for education and sensitisation of the general population towards disability. Additionally, policy- makers should factor persons with disabilities into national strategic plans, in order to ensure an inclusive society.

Commuting and communication: An investigation of taxi drivers’ experiences, attitudes and beliefs about passengers with communication disorders

GREEN, Sianne
MOPHOSHO, Munyane
KHOZA-SHANGASE, Katijah
2015

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Background: One of the most popular means of public transport within South Africa is mini-bus taxis.

 

Objectives: As South Africa is made up of diverse cultures, religions and beliefs, the aim of this study was to explore Johannesburg based taxi drivers’ experiences of beliefs about, and attitudes towards passengers who have a communication disability.

 

Method: Semi-structured interviews were conducted with 10 mini-bus taxi drivers.

 

Results: Interviews revealed that almost all the taxi drivers had encountered passengers with a communication disability, and had an awareness of passengers with a hearing disability as opposed to a speech disability. Furthermore mini-bus taxi drivers generally held a positive view of their passengers with a communication disability.

 

Conclusion: Study findings contribute to existing literature within the fields of speech pathology and audiology, advocacy groups and policy makers, particularly research studies on participation experiences of persons with communication disabilities related to transportation access. The results of the study should also provide a foundation for disability policy development initiatives with the aim of increasing levels of public awareness.

Dialogues on sustainable development : a disability-inclusive perspective

KEOGH Mary
2015

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“This publication, with contributions from civil society, UN agencies and EU institutions as well as disability and development organisations…highlights the many commonalities between disability-inclusive development and a range of overarching development themes. It is structured around the three basic elements of sustainable development – economic, social and environmental sustainability – and discusses a range of sub topics relevant to these areas” 

 

Note: easy-to-read version is provided as a related resource link

Making sure people with disabilities everywhere can have a better future

CHRISTOFFEL BLINDENMISSION (CBM)
2015

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“This easy-to-read version outlines countries’ development plans looking at how all people in the world can have a better life. The plans involve jobs and money, having a say, women and girls, making cities easier to live in, being clean and safe, coping when big problems happen and having access to information. A case study is also provided

Knowledge and Beliefs about Ear and Hearing Health among Mothers of Young Children in a Rural Community in South India

NARAYANSAMY, M
RAMKUMA, V
NAGARAJAN, R
2014

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Purpose: To study the knowledge and beliefs about ear and hearing healthcare among mothers from a rural community.

 

Method: In 1 week, 6 focus group discussions were conducted across 6 villages of a district in Tamil Nadu in southern India. The participants were 60 mothers who had children below 5 years of age.

 

Results: Mothers in this rural community had information about some aspects of ear and hearing healthcare. They were aware that use of hairpins and safety- pins to clean ears was harmful; they were knowledgeable about ways to identify hearing ability (child responds to name call, verbal instructions, and startles at loud sounds); and, conditions like consanguinity and malnutrition of expectant mothers were recognised as risk factors for hearing loss. However, misconceptions also existed. The practice of pouring herbal juices to remove insects in the ear continued; there was the perception that all children with a hearing problem were “deaf”, and a lack of awareness about the possibility of partial/unilateral hearing loss. Regarding the age of identification, mothers believed that a child’s ability to speak and the ability to hear was pertinent to assess hearing. None of the mothers related normal speech development to normal hearing.

 

Conclusion: For the success of a community-based hearing screening programme, it is important to utilise the existing knowledge of the mothers, and simultaneously attempt to fill in gaps in knowledge and clarify misconceptions. These measures will facilitate greater compliance from the community in achieving the goals of early identification and early intervention for problems of hearing loss.

Inheritance, poverty, and disability

GROCE, Nora Ellen
LONDON, Jillian
STEIN, Michael Ashley
2014

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Inheritance is a significant means of transferring wealth from one generation to the next, and therefore increasingly attracts attention from researchers and pol- icy-makers working on intergenerational and multidimensional poverty. How- ever, until now disabled persons have been overlooked in these discussions. This oversight is particularly unfortunate because, as a group, the estimated one bil- lion people with disabilities (some 15% of the world’s population) are among the poorest and most marginalized of the global population. Over the past dec- ade, a small but growing literature has examined the recursive connections between poverty and disability throughout the developing world. In this paper, we argue that disabled individuals are routinely denied inheritance rights in many low-income and middle-income countries, and that this is a significant and largely unrecognized contributor to their indigence. The denial of inheritance is both a social justice issue and a practice that can no longer be overlooked if disabled persons are to be brought into the development mainstream.

Reciprocity in Global Mental Health Policy

WHITE, Ross
SASHIDHARAN, Sashi
2014

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In an attempt to address inequalities and inequities in mental health provision in low and middle-income countries the WHO commenced the Mental Health Gap Action Programme (mhGAP) in 2008. Four years on from the commencement of this programme of work, the WHO has recently adopted the Comprehensive Mental Health Action Plan 2013-2020. This article will critically appraise the strategic direction that the WHO has adopted to address mental health difficulties across the globe. This will include a consideration of the role that the biomedical model of mental health difficulties has had on global strategy. Concerns will be raised that an over-reliance on scaling up medical resources has led to a strengthening of psychiatric hospital-based care, and insufficient emphasis being placed on social and cultural determinants of human distress. We also argue that consensus scientific opinion garnered from consortia of psychiatric ‘experts’ drawn mainly from Europe and North America may not have universal relevance or applicability, and may have served to silence and subjugate local experience and expertise across the globe. In light of the criticisms that have been made of the research that has been conducted into understanding mental health problems in the global south, the article also explores ways in which the evidence-base can be made more relevant and more valid. An important issue that will be highlighted is the apparent lack of reciprocity that exists in the impetus for change in how mental health problems are understood and addressed in low and middle-income countries compared to high-income countries. Whereas there is much focus on the need for change in low and middle-income countries, there is comparatively little critical reflection on practices in high-income countries in the global mental health discourse. We advocate for the development of mental health services that are sensitive to the socio-cultural context in which the services are applied. Despite the appeal of global strategies to promote mental health, it may be that very local solutions are required. The article concludes with some reflections on the strategic objectives identified in the Comprehensive Mental Health Action Plan 2013-2020 and how this work can be progressed in the future.

 

Disability and the Global South, 2014, Vol. 1 No. 2

Oscar Pistorius and the melancholy of intersectionality

SWARTZ, Leslie
2013

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The alleged shooting by Paralympian and Olympian athlete Oscar Pistorius of his girlfriend Reeva Steenkamp has led to strong reactions worldwide. Scholars in the field of disability studies have expressed shock and disappointment in response both to the death itself and to its implications for the representation of disability. In South Africa in the wake of the death of Ms Steenkamp, much has been made both by critics of Pistorius and by his defenders about his status as a white South African man, but little has been said about disability issues. This silence in South Africa about disability as a possible identity factor in this case draws attention to the extent to which disability questions remain profoundly raced and gendered, and influenced by the colonial and apartheid past. The tragic alleged shooting by Oscar Pistorius draws attention back to how important intersectionality is to understanding disability in South Africa and other unequal societies.

Training CBR Personnel in South Africa to contribute to the Empowerment of Persons with Disabilities

RULE, S
2013

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Purpose: Recent conceptualisations of community based rehabilitation include empowerment of persons with disabilities as a key activity. This article reports on a study which explored the training of mid-level CBR workers in South Africa, with a specific focus on the ability of the course participants to address the oppression and empowerment of persons with disabilities.

 

Method: Over a three-year period, one cycle of action research was conducted in a non-government organisation that conducts mid-level CBR training in South Africa. Data collection methods included in-depth interviews with staff, students and past graduates of the course, document analysis, participatory rural appraisal techniques and two focus group discussions with the students’ clients.

 

Results: Personnel, who had been trained in CBR before the year 2003, were found to have some difficulty in explaining the social model of disability and the oppression of persons with disabilities at a cultural and structural level. It was noted that after changes were implemented in the CBR course, the students had an orientation to working with, rather than for, persons with disabilities. They began to understand the complexities of empowerment and also engaged in social action to address the oppression of persons with disabilities.

 

Conclusions: The CBR Guidelines require a new skill-mix in mid-level CBR personnel. This study illustrates a possible training approach which can contribute to the development of these skills.

Knowledge, Beliefs and Perception of Leprosy

SINGH, S
SINHA, A K
BANERJEE, B
JASWAL, N
2013

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Purpose: For intervention to be effective, it is essential that the knowledge, beliefs and perception of a specific social group are taken into account. This is particularly true of leprosy where the problems of social stigma and ostracism are more prominent than the disease itself. There are many misconceptions about the cause, methods of transmission, and treatment.

 

The main objectives of the study were to examine the socio-demographic profile of persons with leprosy and to explore their knowledge, beliefs and perception about the disease and its initial symptoms, within a specific socio-cultural milieu.

 

Method: Semi-structured interviews were held with a persons with leprosy at various clinics and care-homes for affected persons in and around Chandigarh, India. Those who had completed their treatment and those who were still undergoing treatment were included in the study. Data collection was done through case studies and in-depth interviews.

 

Results: The name of the disease varied across different geo-cultural zones. Many respondents who were afflicted with only red patches and had no ulcers, believed that they suffered from a skin disease which would turn into leprosy if proper medication was not received. The perception of 64.9 % of the respondents was that leprosy resulted from supernatural causes like God’s punishment, karma, and sin.

 

Conclusion: There is a need to educate persons with leprosy and their families about the etiology of the disease.

Parental Stress in Raising a Child with Disabilities in India

GUPTA, V B
MEHROTRA, P
MEHROTRA, N
2012

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Purpose: To determine parenting stress and its determinants among parents of children with disabling conditions in India.

 

Methods: The Parenting Stress Index – short form and a few open ended questions were administered to a convenience sample of sixty-six patient families in July, 2009 in the cities of New Delhi and Faridabad regions of Northern India through six non- governmental organizations (NGOs) that serve children with disabling conditions.

 

Results: Female sex of the child was associated with higher stress related to failure of the child to meet parent’s expectations and to satisfy the parents in their parenting role. Parents engaged in more lucrative and prestigious occupations had more stress than parents engaged in less prestigious and lucrative occupations irrespective of their income. Many parents reported receiving little support from their extended families in taking care of their child. Religion was found to be a common coping resource used by the parents.

 

Conclusion and Implications: Higher parenting stress in parents of girls raises the possibility of abuse and neglect. Little support from informal family resources underscores the need for developing formal resources for supporting the parents. The specific resources of parenting stress among parents of different socioeconomic status should be explored in future studies so that appropriate interventions can be planned.

Functional Social Skills of Adults with Intellectual Disability

UMADEVI, V
SUKUMARAN, P
2012

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Purpose: The present study aimed to find the level of functional social skills of adults with intellectual disability, and attempted to analyse these skills with respect to gender, level of disability, type of school attended and number of years of schooling.

 

Method: Descriptive method of research was employed for the study. The study sample consisted of 100 adults with intellectual disability, randomly selected from various special schools which provide vocational training in Kottayam district of Kerala state, in South India. Data on social skills of these individuals were collected through a standardised Functional Social Skills Assessment Scale developed by the authors. The data were analysed through arithmetic mean, standard deviation, independent t-test and one-way analysis of variance.

 

Results: The results indicated that only 48% of the adults with intellectual disability in the study sample possessed functional social skills.

Attitudes of Parents towards Children with Specific Learning Disabilities

CHANDRAMUKI, D
VENKATAKRISHNASHASTRY, I
VRANDA, M N
2012

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Purpose: This study explored parental attitudes towards children with specific learning disabilities.

 

Method: The study sample comprised parents of 60 children (30 boys and 30 girls) with Specific Learning Disability (SLD) who attend the Child and Adolescent Psychiatry Out-Patient Department at National Institute of Mental Health and Neurosciences, Bangalore, India. The attitudes of parents were assessed using the Parental Attitude Scale.

 

Results: The results revealed significant differences related to gender of the children on various domains of the scale.

 

Conclusion: The study highlights the need to educate parents to lower their expectations for children with specific learning disabilities, and to strengthen the social support network of these children’s families.

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