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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

Yuin, Kamilaroi, Sámi, and Maori people’s reflections on experiences as ‘Indigenous scholars’ in ‘Disability Studies’ and ‘Decolonisation’

GILROY, John
UTTJEK, Margaretha
GIBSON, Chontel
SMILER, Kirsten
2018

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Disability research in Indigenous communities operates within a culture of academic neo-imperialism. There is a need to decolonise disability research on a global level. Limited knowledge exists on Indigenous disability researchers' experiences in the disability research academy and on Indigenous disability research methodologies. In part, this is due to the limited writings produced by Indigenous peoples on disability research and research methodologies. Four indigenous disability researchers, one from the Nordic Region and two from Australia, and one from New Zealand met during and after the 2017 Nordic Network on Disability Research conference and reflected on and discussed each other’s experiences as Indigenous disability researchers. This paper reports on these scholars’ reflections on comparing the research methodologies and experiences of their disability research. Findings highlight how although Indigenous peoples are from different tribes/nations and countries, there are similarities and differences between each of the Indigenous disability researcher’s approach to decolonisation in disability research. The paper concludes that Sami, Australian Aboriginal people, and Maori people can learn from each other to advance the decolonisation of disability research, service and policy, at local, national and international levels.

 

Disability and the Global South, 2018, Vol.5, No. 2

Audiology and speech-language pathology: Practitioners’ reflections on indigeneity, disability and neo-colonial marketing

PILLAY, Mershen
KATHARD, Harsha
2018

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Indigenous peoples are part of those populations who are underserved by Audiology and Speech-Language Pathology. They include minority world populations like Aboriginal Australians/Canadians and majority world peoples in Asia, Africa and the Americas. How do Western-oriented rehabilitation/disability practitioners practice with Others? In this article, we reflect on our own experiences and use ideological critique to reveal the fault lines in Audiology and Speech-Language Pathology practices. Along with other examples, we analyse South African data, viz.: canonical articles as illuminators and our works (c1990-). We reveal predominant practices/ideologies that contribute to the production of disability. We focus on three interconnected issues (i) the construction of rehabilitation/disability practitioners as (il)legitimate providers for indigenous peoples; (ii) the engagement of epistemic violence across disability practice, educational and policy domains; and (iii) the authoritative (re)inscription of indigenous persons as disabled by transnational practitioners who, like their corporate counterparts, market practices. Professional marketeering is infused with bigotry, masked as benevolence and resourced/justified by global, neo-liberal policies (e.g., international conventions) and funding. We conclude that disability practices and indigeneity in the post-colonial moment capitalises on established settler-native relationships to continue dominance over Others’ lives. Finally, we present a way forward, namely the relationship of Labouring Affinities which promotes deimperialisation and decolonisation practices to enable professional transformation.

 

Disability and the Global South, 2018, Vol.5, No. 2

‘My granddaughter doesn’t know she has disabilities and we are not going to tell her’: Navigating intersections of indigenousness, disability and gender in Labrador

STIENSTRA, Deborah
BAIKIE, Gail
MANNING, Susan
2018

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Drawing from qualitative research and over five years of relationship-building with women in Labrador, Canada, this article explores the intersections of Indigenousness, disability and gender. Labrador offers a unique perspective with its three Indigenous nations, including one Indigenous self-government and settler populations; its remote and Northern location; and its long history as a site for resource exploitation, global military presence and colonial displacements. We explore how these features shape the experiences of women with disabilities, including in rejecting the label of ‘disability’ and finding spaces in their communities of both inclusion and exclusion. Understanding the experiences of women with disabilities in Labrador requires recognizing the disabling consequences of colonization and the fast-track urbanization that has accompanied resource development in the region. We highlight some Indigenous models of inclusion that are already working and can provide an opportunity for service providers, governments and those living in communities to learn from them.

 

Disability and the Global South, 2018, Vol.5, No. 2

Disabling bodies of/and land: Reframing disability justice in conversation with indigenous theory and activism

JAFFEE, Laura
JOHN, Kelsey
2018

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A central claim of this paper is that the destruction of Earth through practices of settler colonialism is inextricable from the disablement of Indigenous ontology, peoples, and communities. The disablement of land/body as a tactic of settler colonialism has persisted for centuries and takes multifarious forms. By highlighting Indigenous struggles to protect Mother Earth and her sacred resources, we suggest that Indigenous ontology, specifically relationships to land (Deloria, 1972), challenges Eurocentric/settler disability theory at the epistemological level by rejecting the taken-for-granted dualism between the environment and (disabled) humans within (settler) disability studies. Indigenous ontology, and Indigenous peoples’ experiences of settler colonialism, belie a clear bifurcation of humans and the environment, or bodies and space. Land appropriation, resource extraction, linguistic genocide, forced removal, erasure, and devastation by settlers invariably wreaks havoc on the land, spirit, livestock, and bodies of Indigenous peoples. Rejecting logics of elimination and imagining alternative futures- in opposition to the capitalist state’s projection of futures devoid of disability and Indigeneity- is essential for realizing national and bodily self-determination for non-Indigenous disabled and Indigenous peoples in the present and into the future.

 

Disability and the Global South, 2018, Vol.5, No. 2

The Convention on the Rights of Persons with Disabilities and its implications for the health and wellbeing of indigenous peoples with disabilities: A comparison across Australia, Mexico and New Zealand

RIVAS VELARDE, Minerva C
O'BRIEN, Patricia
PARMENTER, Trevor R
2018

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This paper explores how the expressed health needs of Indigenous peoples with disabilities resonate with the mandate of Article 25 ‘Health’ of the United Nations Convention on the Rights of Persons with Disabilities (CRPD). The perceptions of indigenous peoples with disabilities are investigated, regarding their access to, and expectations of, health care. Their views are compared to those of health workers, senior bureaucrats and United Nations delegates. An exploratory case study approach was taken to compare three jurisdictions: Australia, Mexico and New Zealand. The data collection techniques used involved semi-structured interviews, focus groups and field notes. The findings suggest that the health needs of indigenous peoples with disabilities are largely underserved and misunderstood by health departments. Specialised and preventive health care for those with disabilities was found to be particularly problematic. Poverty, discrimination and disenfranchisement emerged as being the possible major determinants of the ill health experienced by indigenous peoples with disabilities. The findings and conclusions outlined in this paper advocate the need to build capacity and rights literacy for indigenous peoples with disabilities, particularly with respect to the CRPD, in order to enhance its impact on the health of indigenous people. A legitimate redistribution of resources and decision-making in response to the expressed health needs of indigenous peoples with disabilities is needed if the vision of the CPRD is to be realised in relation to Article 25. 

 

Disability and the Global South, 2018, Vol.5, No. 2

Challenges in global Indigenous–Disability comparative research, or, why nation-state political histories matter

SOLDATIC, Karen
MELBOE, Line
KERMIT, Patrick
SOMERS, Kelly
2018

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Globally, Indigenous people, also known as First Peoples, have the poorest health outcomes of all population groups, resulting in significantly higher rates of chronic disease, ill-health, and disability. Recent research strongly suggests that Australian First Peoples and the Sami peoples of the Nordic region are positioned at opposite ends of the disability–health spectrum. Australia’s First Peoples, now experience the highest rates of disability in the nation’s recorded history, despite the significant government investment over recent decades in national Indigenous policy. Yet, Nordic Indigenous populations appear to have similar health outcomes and living conditions as the rest of the population in the region. In this paper, we compare some of the global assumptions of the two leading countries of the United Nations Human Development Index– Norway (ranked first) and Australia (ranked second)– and examine the ways in which such rankings act to hide the disparities of life trajectories and outcomes for Indigenous persons living with disability compared to the rest of the population in each country. The findings of the comparative analysis illustrate core areas for consideration when undertaking in-depth comparative research with First Nation’s peoples. This includes issues surrounding the differentiated political significance of national population data systems for local Indigenous peoples in their struggles for recognition, and the nuanced processes of population data categorisation that are developed as a result of First Nation’s localised struggles for recognition, respect and rights under processes of European colonisation.

 

Disability and the Global South, 2018, Vol.5, No. 2

‘Black on the inside’: albino subjectivity in the African novel

LIPENGA, Ken Junior
NGMIRA, Emmanuel
2018

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The last decade has seen increased attention to the treatment of people with albinism in several African countries, particularly the peril they find themselves in due to stigma and superstition. As a way of countering these misconceptions, there has been educative activism from legal, medical as well as religious perspectives. In this paper, we draw upon a different discourse- literary representation- arguing that in selected African novels, the authors employ a variety of strategies that counter harmful stereotypes about albinism, and in the process act as literary interventions that enable an appreciation of the person behind the skin condition. Drawing from insights in Literary Disability Studies, the discussion examines the representation of albinism in four African novels: Petina Gappah’s The Book of Memory (2015), Meg Vandermerwe’s Zebra Crossing (2013), Unathi Magubeni’s Nwelezelanga: The Star Child (2016), and Jenny Robson’s Because Pula Means Rain (2000), and highlights the way albinism is presented as bodily condition that intersects with other experiences on the continent, including indigenous epistemologies, gender, sexuality and family relationships. 

 

Disability and the Global South, 2018, Vol.5, No. 2

The role of indigenous and external knowledge in development interventions with disabled people in Burkina Faso: the implications of engaging with lived experiences

BEZZINA, Lara
2018

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This paper explores the significance of engaging with the lived experiences of disabled people in countries like Burkina Faso in order to implement long-lasting and beneficial development. It looks at the way disability was conceived of in pre-colonial times and how knowledge imported from the colonisers conflicted with, and continues to influence today, indigenous knowledge in Burkina Faso. Although Burkina Faso obtained its independence from European colonisers over fifty years ago, disability as a terrain for intervention continues to be colonised by international non-governmental organisations (INGOs) that frame their approaches in western models, which are not necessarily applicable in countries like Burkina Faso. In a context where the predominant view of disability is that of disabled people being an economic burden, many disabled people in Burkina Faso feel the need to prove themselves as economically independent; and yet development agencies often do not engage with disabled people’s voices when designing and implementing development programmes. This paper argues that there is a need to engage with disabled people’s lived experiences and knowledges through processes such as participatory video which create spaces where marginalised people’s voices can be heard and listened to by the development agencies that influence disabled people’s lives.

 

Disability and the Global South, 2018, Vol.5, No. 2

An intersection in population control: welfare reform and indigenous people with a partial capacity to work in the Australian northern territory

St GUILLAUME, Louise
THILL, Cate
2018

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In Australia, in the last decade, there have been significant policy changes to income support payments for people with a disability and Indigenous people. These policy reforms intersect in the experience of Indigenous people with a partial capacity to work in the Northern Territory who are subject to compulsory income management if classified as long-term welfare payment recipients. This intersection is overlooked in existing research and government policy. In this article, we apply intersectionality and Southern disability theory as frameworks to analyse how Indigenous people with a partial capacity to work (PCW) in the Northern Territory are governed under compulsory income management. Whilst the program is theoretically race and ability neutral, in practice it targets specific categories of people because it fails to address the structural and cultural barriers experienced by Indigenous people with a disability and reinscribes disabling and colonising technologies of population control.

 

Disability and the Global South, 2018, Vol.5, No. 2

Inclusion of marginalised Aboriginal and Torres Strait Islander peoples with neurocognitive disability in the National Disability Insurance Scheme (NDIS)

TOWNSEND, Clare
McINTYRE, Michelle
LAKHANI, Ali
WRIGHT, Courtney
WHITE, Paul
BISHARA, Jason
CULLEN, Jennifer
2018

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Given the ambiguity surrounding the extent and experience of neurocognitive disability (NCD) among marginalised Aboriginal and/or Torres Strait Islander peoples in Australia, evidence regarding the level and nature of NCD is crucial to ensure equitable access and inclusion into the National Disability Insurance Scheme (NDIS). This paper reports the results of the implementation of The Guddi Protocol (a culturally informed and appropriate screening protocol for Aboriginal and/or Torres Strait Islander peoples) at two locations in Queensland. Results indicated high levels of NCD, and additional qualitative data revealed a number of factors associated with the complex disablement of study participants, namely: i) intergenerational trauma; ii) a social context of disadvantage, marginalisation and exclusion; and iii) the nonidentification of disability. The results are linked to implications for NDIS inclusion for this population, and recommendations are made. Unless the extent and nature of complex disability and the issues surrounding culturally safe policy, and service design and engagement are addressed with and by Aboriginal and Torres Strait Islander peoples, including those who experience complex disablement, marginalised people will continue to be effectively excluded from the NDIS.

 

Disability and the Global South, 2018, Vol.5, No. 2

Portrayal of disabled people in the Kuwaiti media

ALENAIZI, Hussain Mohammed
2018

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This paper explores the views of 10 participants on how the Kuwaiti media represents disabled people. Participants expressed their views through focus groups and interviews. The findings show that, generally, disabled people in Kuwait are shown in a negative light in the media. The media depicts disabled people as ‘pitiable’, ‘violent’, ‘sinister’, ‘tragic’, and as a ‘tool of ridicule’. The findings, however, witness some positive examples of media representation regarding how some TV shows portray deaf people in a positive light. On the other hand, the study suggests that learning disabled people are the most negatively depicted group in Kuwaiti society. There are also indications of implicit endorsement or internalisation by the participants of views of disabled people as ‘extraordinary’ despite the presence of their impairments. The study concludes that it is more important that the media shows the everyday lives of disabled people before showing their abilities and achievements.

 

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

Global AgeWatch Insights. The right to health for older people, the right to be counted

ALBONE, Rachel
et al
2018

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This report considers the progress being made to achieve older people's right to health amid the global drive towards universal health coverage. It explores how older people are currently accessing health services and what changes need to be made to improve on this. It considers the role of data in driving and informing changes to health systems and the services they deliver. Data must be collected with and about older people to ensure adequate evidence for service design and delivery that is targeted and appropriate. This report explores the adequacy of current data systems and collection mechanisms and how, alongside health systems, they must be adapted in an ageing world. 

 

This report is supported by 12 country profiles (for Argentina, Colombia, El Salvador, Kenya, Lebanon, Moldova, Myanmar, Pakistan, Serbia, Tanzania, Vietnam and Zimbabwe; see Appendix 1). These provide national information on trends in the physical and mental health status of older people, and population-level information on access to UHC. The profiles are supplemented by data mapping, showing the national data available on older people’s health in the 12 profile countries, and revealing the data gaps. The data mapping results are available at www.GlobalAgeWatch.org.

Defying the barriers

KHONDKAR, Laila
HAQUE, Reazul Md
January 2018

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Research summaries, case studies and process documentation from “Inclusive Protection and Empowerment Project for Children with Disabilities (IPEP)” are presented.  The aim of the project was to build resilience and capacity among children with disabilities and to create a violence-free community for them. The project ran in five districts of Bangladesh i.e. Sylhet, Dhaka, Barishal, Rangpur and Gaibandha from 2014- 2017. 

 

The research topics were:

  • Understanding the Vulnerabilities of Children with Disabilities Living in both Government-run and Private Residential Institutions
  • The Vulnerabilities of Children with Disabilities from Low-income Households
  • Social Protection Schemes Relevant to Children with Disabilities and their Families 

 

Disability in Somalia

ROHWERDER, Brigitte
January 2018

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People with disabilities have been identified as a particularly marginalised and at risk group within Somali society as a result of the numerous attitudinal, environmental, and institutional barriers they face, and the lack of concerted efforts to include them . This rapid review identifies available evidence on the experiences of people with disabilities living in Somalia. It was found that there are still numerous evidence gaps in relation to the experiences of people with disabilities living in Somalia.

Frida Kahlo and pendular disability identity: A textual examination of El Diario de Frida Kahlo

JONES, Elizabeth
2018

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Frida Kahlo is undoubtedly one of Mexico’s most famous female artists, and her rising popularity led to the 1995 publication of the diary she kept the last ten years of her life. Nonetheless, while the diary has received some critical scrutiny, the text has not been analyzed as an independent unit from the book’s visual components. As a result, Kahlo’s disability identity has also not been explored, but rather was assumed due to the extensive injuries Kahlo suffered as a young woman. These examinations have also tended to view Kahlo as having a fragmented sense of self and have allowed the diary’s artwork to guide this assumption. In dialogue with prior studies of Kahlo’s diary, this analysis will view the diary as an independent text and apply Karen K. Yoshida’s model of pendular reconstruction of self and identity to demonstrate how Kahlo describes her disability identity and better understand what others have called her ‘fragmentation.’ 

 

Disability & the Global South (DGS), 2018, Vol. 5 No. 1

Transnationalizing disability policy in embedded cultural-cognitive worldviews: the case of Sub-Saharan Africa

HAANG’ANDU, Privilege
2018

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In 2013, the European Union (EU) mission in Zambia made a public statement about its financial support to the LGBTI community. In panic and fear, LGBTI leaders urged the EU office to withdraw the statement and encouraged other foreign missions to instead offer discrete support to the LGBTI community. This anecdote is illustrative of the experiential gap between geopolitical groups confronting a similar policy issue. For the EU, the rights of LGBTI persons are universally important; for the LGBTI community in the Zambian context, safety and discretion are more important. This paradox illustrates the challenges facing the transnationalizing of disability policy. How could we explain the fact that transnational disability actors have for the last two decades been trying to disseminate disability ‘knowledge’ and norms in Sub-Saharan Africa (SSA) without corresponding social policy and ideational success? This article examines this policy and ontological discrepancy. Advancing a constructivist argument, the article contends that transnational policy diffusion, largely built on colonial legacies of universalizing Western knowledge paradigms, has preoccupied itself with political institutional engagements at the expense of engaging contextspecific sociological and ideological factors, resulting in sterile legislative exercises. To develop a truly SSA-relevant disability policy infrastructure, the article proposes ideational bricolaging and translation, a constructivist process of carefully adhering to and negotiating with context-specific ideational factors that inform the disability experience in SSA countries.

 

Disability & the Global South (DGS), 2018, Vol. 5 No. 1

The nation’s body: disability and deviance in the writings of Adolf Hitler

BENGTSSON, Staffan
2018

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This article takes its starting point in the Nazi ideology as it appears in the writings of Adolf Hitler, and discusses how disability and the body can be understood in the context of Mein Kampf. The article underlines how disability and bodily infirmities, alongside race, featured significantly in Hitler’s demagogic message. Although the overall image of disability was related to a sense of threat – and a culture gone wrong – Mein Kampf also contains a mixed interpretation of disability as a phenomenon, in which different and opposing disability narratives took part in the construction and the image of the body as a national property.

Disability Data Review: A collation and analysis of disability data from 40 countries

LEONARD CHESHIRE
2018

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This report was developed to inform dialogue at the 2018 Global Disability Summit. It contains full details on the methods and findings of data analysis from 40 countries and 16 indicators. The report identifies available data and existing gaps to understand how the growing body of available disability data can be disaggregated and to support monitoring and evaluation efforts for the Sustainable Development Goals (SDGs) and the United Nations Convention on the Rights of Persons with Disabilities (CRPD).

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