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Are persons with disabilities included in the effort to leave no-one behind? Mapping disability data in development in Asia and the Pacific

CBM GLOBAL’S INCLUSION ADVISORY GROUP
February 2022

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In the Asia Pacific region, UNFPA and partners work together to implement the Incheon Strategy to “Make the Right Real” for Persons with Disabilities. The Incheon Strategy is the region’s first set of disability-specific development goals to track progress towards the fulfilment of rights of persons with disabilities.

In the region, it is estimated that there are over 650 million persons with disabilities. However, without accurate, timely and disaggregated data, countries are unable to develop effective policies and programmes, monitor the wellbeing of persons with disabilities and evaluate the equity and impact of development efforts. This endangers country commitments to ‘leave no one behind’ and undermines their obligations to the Convention on the Rights of Persons with Disabilities.

This groundbreaking report demonstrates the importance of ensuring data is inclusive and provides recommendations for immediate action in order to improve the collection, analysis and reporting of disability data

Taking a Disability-Inclusive Approach to Pandemic Responses

WICKENDEN, Mary
THOMPSON, Stephen
ROHWERDER, Brigitte
SHAW, Jackie
2021

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The Covid-19 pandemic has affected communities globally, yet the impact has not been equal. People with disabilities were already often living with severe disadvantage and marginalisation and, as predicted by many disability-focused agencies, Covid-19 has exacerbated these inequalities. Emerging evidence from Inclusive Futures, a UK Foreign, Commonwealth & Development Office (FCDO)-funded programme, highlights the catastrophic emotional and material impacts on people with disabilities in Nepal and Bangladesh. To respond to and plan for future crises, decision makers should consult inclusively with both organisations of people with disabilities (OPDs) and people with disabilities themselves.
 

The temporalities of supported decision-making by people with cognitive disability

WIESEL, Ilan
SMITH, Elizabeth
BIGBY, Christine
THEN, Shih-Ning
DOUGLAS, Jacinta
CARNEY, Terry
2020

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In many societies, people with cognitive disability have been pre- sumed to lack reasoned decision-making capacity. Consequently, substituted decision-making laws and practices have traditionally authorised some people such as parents, guardians or medical professionals, to make decisions on their behalf. Several countries are now moving towards an alternative supported decision-making paradigm whereby people with different cognitive abilities are supported to make decisions that reflect as much as possible their ‘will, preferences and rights’. In this paper we examine how geo- graphical thinking about temporalities might illuminate some of the legal, ethical and practical complexities of supported decision- making. The paper draws on qualitative data from interviews with people with intellectual disabilities or acquired brain injury, and those who support them in making decisions. We examine how temporal scales and boundaries shape the determination of decision-making capacity; how decision-makers’ ‘will and preferences’ are interpreted by supporters; and how the labour of support for decision-making is organised. We argue that further geographical engagement with supported decision-making can help significantly advance this important disability rights agenda.

Understanding paid support relationships: possibilities for mutual recognition between young people with disability and their support workers

ROBINSON, Sally
GRAHAM, Anne
FISHER, Karen R
NEALE, Kate
DAVY, Laura
JOHNSON, Kelley
HALL, Ed
2020

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The quality of paid relationships is key for effective support, yet little is known about how people receiving and providing sup- port understand and experience the relationship. This paper reports on recent research that explored the role of relationships with paid support workers in strengthening the rights and well- being of young people with cognitive disability in Australia. The research used photo-rich participatory methods with 42 pairs of young people and their support workers and drew on Honneth’s recognition theory to specifically explore experiences of being valued, respected and cared about in their work together. The findings point to the importance of these con- nected aspects of recognition in paid support relationships, highlighting both the presence and absence of these, as well as experiences of misrecognition. The implications of recognition for strengthening support need close consideration in an inter- national context characterised by personalisation of support, resource constraints and inquiries into poor practice.

Fiji Gender, disability and inclusion analysis: COVID-19 and TC Harold, June 2020

COWLEY, Anna
June 2020

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While Fiji only had 18 cases of COVID-19, all of whom have recovered, the economic and social outcomes are significant and will be felt for years to come. The closure of international borders led to visitor arrivals contracting significantly by 43.5 percent up to April and the economy is projected to decline by 4.9% in 2020 under COVID-19. The impacts will extend to government revenue, which is expected to decrease by almost 50% in the next financial year.

In addition to the pandemic, Fiji was also struck by Severe Tropical Cyclone Harold on 08 April, causing States of Natural Disaster to be declared for COVID-19 and for TC Harold within the same week. Although Fiji is used to cyclones, prevention and movement restriction measures in place for COVID-19 made it difficult to respond to the trail of destruction left by the Category 4 cyclone. A total of 250 evacuation centers were opened in all four divisions and around 10,000 people were displaced.

The objectives of the Gender, Disability and Inclusion Analysis are:

- To analyse and understand the different impacts that the COVID-19 pandemic and TC Harold potentially have on women, men, girls and boys, people with disabilities and people of diverse SOGIESC and other marginalised groups in Fiji;

- To inform humanitarian programming in Fiji based on the different needs of women, men, boys and girls, people with disabilities and people of diverse SOGIESC with a particular focus on Gender Based Violence (GBV), Health, Water, Sanitation and Hygiene (WASH), Education in Emergencies, Food Security and Livelihoods, and Coping Strategies; and

- To provide recommendations for organisations responding to COVID-19 and TC Harold.

Disability at a Glance 2019: Investing in accessibility in Asia and the Pacific — Strategic approaches to achieving disability-inclusive sustainable development

TATA, Srinivas
et al
December 2019

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This report lays out foundational concepts and terminologies related to disability and accessibility, and outlines the tools and approaches for successful investment in accessibility. Furthermore, it identifies drivers and added values of investment, and analyses the status of disability-inclusive development and accessibility investment across Asia and the Pacific. Finally, it provides recommendations to governments across key areas of focus to ensure that societies are built to be sustainable and inclusive.

Case studies from Australia, the Republic of Korea and India are presented.

Gender, sexuality and relationships for young Australian women with intellectual disability

O’SHEA, A
FRAWLEY, P
2019

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Gender has often been overlooked in the lives of people with intellectual disability, resulting in a limited understanding and service response. This is in part due to a lack of knowledge about the way people with intellectual disability negotiate and build a gendered identity. In this article we present research undertaken with six young women with an intellectual disability who worked with the first researcher to co-develop some stories from their lives. We show how, facilitated by an innovative method which focused on meaningful engagement, the women told stories of richly gendered lives and subjectivities. Their stories showed how gender can be a desired and productive subjectivity, and how consideration of gender can help to identify resistance and agency in their lives. Their stories illustrate how gender is necessary in forming a comprehensive understanding of the lives of women with intellectual disability.

Sport coaches as policy actors: an investigation of the interpretation and enactment of disability and inclusion policy in swimming in Victoria Australia

HAMMOND, Andrew M
PENNEY, Dawn
JEANES, Ruth
2019

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This paper draws upon education policy sociology, and sport coaching literature, in critically examining sport coaches as policy actors. Stephen Ball and colleagues’ conceptualisation of different policy actor positions and roles provided the framework for research that investigated how eight professional swimming coaches in Victoria, Australia, interpreted and enacted disability and inclusion policy. A discourse analysis of semi-structured interviews with the eight coaches reveals the complexities associated with how and why different coaches interpret and enact disability and inclusion policy imperatives in different ways in their specific club contexts. Data are presented that shows coaches adopting multiple and hybrid policy actor positions and roles as disability and inclusion policy was interpreted, translated and ultimately, expressed as pedagogic rules and practices. Our discussion brings to the fore questions about power, agency and control in coaching, while highlighting both limits and possibilities for the enactment of inclusive disability sport policies by swimming coaches working in Victoria, Australia. In conclusion we suggest that this research illustrates that coaches are capable of enacting social change, and have some agency to do so, but at the same time appear constrained by established discourses that shape policy and give important direction to pedagogic practice. We advocate that further in-depth research is required into the coaching policy-practice nexus, particularly as it relates to the advancement of equity and inclusion.

Decolonizing schools: Women organizing, disability advocacy, and land in Sāmoa

ANESI, Julianne
2019

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In the 1970s and 1980s, Sāmoan women organizers established Aoga Fiamalamalama and Loto Taumafai, two educational institutions, in the independent state of Sāmoa. This article examines these schools’ support of students labelled as ma’i (sick), specifically those with intellectual and physical disabilities. Through oral histories and archival research, I show the vital role performed by the women organizers in changing the educational system by drawing attention to the exclusion of disabled students. I focus on the collective labor of Sāmoan women and their influence in decolonizing schools. In this regard, the women organizers used Sāmoan concepts of fa’a Sāmoa (culture), fanua (land), and tautua (service) as ways to redefine the commitment of the education system. This is a story about daring to reimagine indigenous disabled bodies and their futures through knowledge systems, theory, and literature.

 

Disability & the Global South (DGS), 2019, Vol. 6 No. 1

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

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

Re-theorising inclusion and reframing inclusive practice in physical education

PENNEY, Dawn
JEANES, Ruth
O'CONNOR, Justen
ALFREY, Laura
2017

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Inclusion remains a key political agenda for education internationally and is a matter that teachers across subject communities and phases of education are challenged to respond to. In physical education specifically, research continues to highlight that current practice often reaffirms rather than challenges established inequities. This paper critically explores the understandings of inclusion that contribute to this situation and addresses the challenge of advancing inclusion in physical education from conceptual and pedagogical viewpoints. DeLuca’s [(2013). “Toward an Interdisciplinary Framework for Educational Inclusivity.” Canadian Journal of Education 36 (1): 305–348] conceptualisation of normative, integrative, dialogical and transgressive approaches to inclusion is employed as a basis for critical analysis of current practice and for thinking afresh about inclusive practice in physical education in relation to curriculum, pedagogy and assessment. Analysis informs the presentation of a set of principles that are designed to assist teachers and teacher educators to transform inclusive practice in physical education and in doing so, realise visions for physical education that are articulated in international policy guidelines and contemporary curriculum developments.

Communication Disability in Fiji: Community Cultural Beliefs and Attitudes

HOPF, Suzanne C
MCLEOD, Sharynne
MCDONAGH, Sarah H
RAKANACE, Epenisa N
2017

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Purpose: Beliefs about communication disability vary according to the cultural context, and influence people’s attitudes and help-seeking behaviour. Little is known about Fijians with communication disability or the communities in which they live, and specialist services for people with communication disability are yet to be established in Fiji. An understanding of Fijian beliefs about the causes of communication disability and attitudes towards people with communication disability may inform future service development.

 

Method: An interpretivist qualitative research paradigm and the International Classification of Functioning, Disability and Health (ICF) framework informed this project’s design. Scenarios of adults and children with communication disability were presented to 144 participants, randomly sampled across multiple public spaces in two Fiji cities. Thematic analysis of responses to 15 survey questions revealed participant beliefs about the causes and attitudes towards people with communication disability.

 

Results: Three clusters describing perceived causes emerged from the analysis - internal, external, and supernatural. Major clusters across child and adult scenarios were similar; however, response categories within the scenarios differed. Community attitudes to people with communication disability were predominantly negative. These community attitudes influenced individual participants’ beliefs about educational and employment opportunities for Fijians with communication disability.

 

Conclusion: Determination and acknowledgement of individuals’ belief systems informs development of culturally appropriate intervention programmes and health promotion activities.

 

Implications: Speech-language pathologists and other professionals working with Fijian communities should acknowledge community belief systems and develop culturally-specific health promotion activities, assessments, and interventions.

Entering the SDG era: What do Fijians prioritise as indicators of disability-inclusive education?

SPRUNT, Beth
DEPPELER, Joanne
RAVULO, Kitione
TINAIVUNIVALU, Savaira
SHARMA, Umesh
2017

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Sustainable Development Goal (SDG) 4 is to ‘Ensure inclusive and equitable quality education and promote lifelong learning opportunities for all’ and the targets and indicators for SDG 4 emphasise the importance of measuring outcomes for children with disabilities (United Nations, 2015b). This paper reports on findings from qualitative research investigating Fijian stakeholders’ priorities for measuring success of efforts within a contextually and culturally meaningful process of disabilityinclusive education; that is, achievement of SDG 4 for children with disabilities. The priorities are presented in light of the specific challenges in Fiji to fulfilling this goal. The research presented in this paper is one part of a much larger mixed method study funded by the Australian aid program that aimed to develop and test indicators for the education of children with disabilities in the Pacific (Sharma et al., 2016). Fijian researchers with lived experience of disability undertook key informant interviews and focus group discussions with 28 participants. The findings include the need for or role of: an implementation plan and resourcing to ensure the national inclusive education policy is activated; improved awareness and attitudes; competent, confident and compassionate teachers; disability-specific services and assistive technology; accessible buildings and transport; and the important role of special schools. Inclusive education reform requires that Fiji incorporates and builds on existing strengths in special and inclusive education to ensure that systems and people are prepared and resourced for inclusion. The paper concludes that targets within SDG 4 are compatible with priorities within Fiji, however additional indicators are required to measure locally-prioritized changes related to barriers which need to be addressed if Fiji is to make progress towards the higher-order targets of SDG 4.

 

Disability & the Global South (DGS), 2017, Vol. 4 No. 1

The wellbeing of children with developmental delay in Bangladesh, Bhutan, Laos, Nepal, Pakistan and Vietnam: An analysis of data from UNICEF’s Multiple Indicator Cluster Surveys

EMERSON, Eric
SAVAGE, Amber
LLEWELLYN, Gwynnyth
December 2016

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This report, produced by the University of Sydney’s Centre for Disability Research and Policy (CDRP),
uses data collected in rounds four and five of UNICEF’s Multiple Indicator Cluster Surveys programme (MICS) to describe the wellbeing of young children with and without developmental delay in six Asian countries. The United Nations Sustainable Development Goals (SDG) were used as a framework for identifying indicators of child wellbeing.

The report, authored by CDRP Disability and Inequity Stream Leader Professor Eric Emerson with Dr Amber Savage of the Family and Disability Studies Initiative, University of Alberta, Canada and CDRP Director Professor Gwynnyth Llewellyn, found that children with Developmental Delay in Bangladesh, Bhutan, Laos, Nepal, Pakistan and Vietnam are more likely than their peers to:
• Be living in poverty (SDG1). In five out the six countries children with developmental delay were more likely to be living in poverty than their peers
• Experience hunger (SDG2). In all six countries children with developmental delay were more likely to have experienced persistent severe hunger than their peers
• Suffer poor health (SDG3). On three indicators (poor peer relationships, diarrhoea and fever) children with developmental delay were more likely to have poor health than their peers. On three indicators (obesity, aggression and acute respiratory infections) there was no systematic difference between children with and without developmental delay.
• Experience barriers to quality education (SDG4). On all four indicators (attendance at early childhood education centre, family support for learning, access to learning materials in the home, maternal level of education) children with developmental delay were more disadvantaged than their peers.
• Experience barriers to clean water and sanitation (SDG6). On two indicators (improved sanitation, place to wash hands) children with developmental delay were more disadvantaged than their peers. On one indicator (improved drinking water) there was no systematic difference between children with and without developmental delay.

The authors noted that “Since the development of the United Nations Convention on the Rights of the Child (UNCRC) in 1998, increased attention has been paid to monitoring the well-being of children. The UN Convention on the Rights of Persons with Disabilities (UNCRPD) and UNCRC both contain explicit provisions regarding the rights of children with disabilities. These impose obligations on governments to act to ensure that children with disabilities enjoy the same rights and opportunities as other children. In order to promote the visibility of children with disabilities, enable better policy, and monitor progress, disaggregation of data related to children’s well-being on the basis of disability is needed."

Together towards an inclusive world (series of videos to celebrate CRPD's 10th anniversary)

Australian Disability and Development Consortium
December 2016

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ADDC and ten of its members have produced a series of short videos featuring persons with disability who are, or were, engaged in a disability-inclusive development (DID) project or initiative (in Australia or overseas). In these videos they share their personal stories and how disability inclusive development projects changed their lives, benefitted their communities and contributed to a more inclusive society.

The video series was officially launched during a parliamentary event in Canberra on 30 November 2016 in the presence of some of the persons featuring in the videos and of senior politicians from different Australian political parties.

The event was opened by an address by Senator Concetta Fierravanti-Wells, Minister for International Development and the Pacific. In her speech, she confirmed both the Australian government’s and her personal strong commitment to ensuring that all Australian development programs are disability-inclusive and to championing DID internationally. You will find a transcript of the Minister’s speech here attached.​

Exploring Conceptualisations of Disability: A Talanoa approach to Understanding Cultural Frameworks of Disability in Samoa

Picton, Catherine
Horsley, Mike
Knight, Bruce Allen
2016

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Purpose: The concepts of disability were explored from a Samoan cultural frame. The impact of disability conceptualisations on identity development and cultural inclusion were assessed through the Samoan language. The study also evaluated the extent of endorsement of global policy initiatives at a local level.

 

Methods: Through facilitating a Talanoa approach, which is a rich cultural tradition of sharing knowledge, space emerged for dialogue around the lived experiences of members of the disability community in Samoa.

 

Results: Incongruous conceptualisations of disability were identified as a contributing factor in the persistence of stigmatising attitudes and beliefs. Borrowing concepts and terms from moral, medical, and social disability models, this disparity of conceptualisation is reflected in Samoan disability terminology. It was also found that while global policy initiatives are generally politically embraced, they engage more effectively with the community when they areunderpinned by Samoan cultural ontologies.

 

Conclusion: The findings suggest that multiple ideologies regarding rights, capabilities and experiences, challenge the development of identity, self-worth, and inclusion. There is significant value in merging cultural concepts with a social disability model framework. It is important to future development that people with disability can express a sense of cultural identity without risking the right to inclusion and equality.

Disadvantage and disability: Experiences of people from refugee backgrounds with disability living in Australia

KING, Julie
EDWARDS, Niki
CORREA-VELEZ, Ignacio
HAIR, Sara
FORDYCE, Maureen
2016

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This study of people of refugee backgrounds explored how disability is culturally constructed in the family context, including barriers and enablers to social inclusion and service uptake in Brisbane, Australia. Key themes included the lived experiences of people with disability in their country of origin; experiences of the functioning of government and non-government services; family; barriers in communication and language; transport as a barrier to access; the community of people from their country within Australia; and service gaps and needs. Participants had experienced stigma in their country of origin, and for some this continued within their community of origin. Language and lack of engagement by government and non-government services contributed to service gaps and access barriers. Family remained important. People from refugee backgrounds living in Australia experience significant and compounding barriers to service access, and have unmet needs. They have a limited voice in the current policy context, and lack knowledge and support to facilitate interactions with the current system. Further research would assist in development of a more detailed understanding of these issues.

 

Disability & the Global South (DGS), 2016, Vol. 3 No. 1

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