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India inclusion summit

2018

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India Inclusion Summit is an annual event that began in 2012 to create awareness about disabilities and the need for Inclusion. The event brings together thought leaders and unsung heroes from the field of disability and inclusion to deliberate, discuss and drive change in our society. Videos of the presentations and talks are available for previous years.

Disability, health and human development

MITRA, Sophie
2018

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This open access book introduces the human development model to define disability and map its links with health and wellbeing, based on Sen’s capability approach. The author uses panel survey data with internationally comparable questions on disability for Ethiopia, Malawi, Tanzania and Uganda. It presents evidence on the prevalence of disability and its strong and consistent association with multidimensional poverty, mortality, economic insecurity and deprivations in education, morbidity and employment. It shows that disability needs to be considered from multiple angles including aging, gender, health and poverty. Ultimately, this study makes a call for inclusion and prevention interventions as solutions to the deprivations associated with impairments and health conditions.

 

Chapters include:

  • The Human Development Model of Disability, Health and Wellbeing
  • Measurement, Data and Country Context
  • Prevalence of Functional Difficulties
  • Functional Difficulties and Inequalities Through a Static Lens
  • Dynamics of Functional Difficulties and Wellbeing
  • Main Results and Implications

 

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

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

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

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

Disability Inclusive Health Technical Advisory Group established by Core Group

2018

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In 2018, CORE Group prioritised a Disability Inclusive Health agenda and established the Disability Inclusive Health Technical Advisory Group (TAG), based on requests from the global practitioner community, to address gaps in disability inclusivity in health programming and advocacy. The Disability Inclusive Health Technical Advisory Group is open to all CORE Group members and associates, as well as non-members.

 

CORE Group’s Interest Groups are convened based on need. The Interest Groups are: Disability Inclusive Health Technical Advisory Group; Humanitarian-Development Task Force; and Noncommunicable Diseases Interest Group.

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

Let me decide and thrive - Global discrimination and exclusion of girls and young women with disabilities

PLAN INTERNATIONAL
December 2017

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Girls and young women with disabilities have the right to make decisions over their own bodies and live free from violence and fear. Yet, on a global level, they are the people least likely to enjoy their sexual and reproductive health and rights (SRHR). Compelled by this reality, Plan International and the Office of the UN Special Rapporteur on the Rights of Persons with Disabilities have joined forces to ensure young women and girls with disabilities can exercise choice and have control over their bodies. The Let Me Decide and Thrive initiative is supported by in-depth, critical field and desk research and aims to empower girls and young women with disabilities, raise awareness of their plight among stakeholders, and work to secure their sexual and reproductive health and rights.

This research found that the barriers to SRHR confronted by girls and young women with disabilities are overwhelming: infantilisation and disempowerment; forced sterilisation, abortion, and contraception; disproportionate suffering from all forms of violence; substantial barriers in accessing justice; discriminatory attitudes, norms, and behaviours rendering them invisible; and a lack of accessible and appropriate SRHR information and services.

Do experiences and perceptions about quality of care differ among social groups in Nepal? A study of maternal healthcare experiences of women with and without disabilities, and Dalit and non-Dalit women

DEVKOTA, Hridaya Raj
MURRAY, Emily
CLARKE, Andrew
GROCE, Nora
December 2017

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Background
Suboptimal quality of care and disparities in services by healthcare providers are often reported in Nepal. Experience and perceptions about quality of care may differ according to women’s socio-cultural background, individual characteristics, their exposure and expectations. This study aimed to compare perceptions of the quality of maternal healthcare services between two groups that are consistently considered vulnerable, women with disabilities from both the non-Dalit population and Dalit population and their peers without disabilities from both non-Dalit and Dalit communities.

Methods
A cross-sectional survey was conducted among 343 total women that included women with disabilities, Dalits and non-Dalits. Women were recruited for interview, who were aged 15–49 years, had been pregnant within the last five years and who had used maternal care services in one of the public health facilities of Rupandehi district. A 20-item, Likert-type scale with four sub-scales or dimensions: ‘Health Facility’, ‘Healthcare Delivery’, ‘Inter-personal’ and ‘Access to Care’ was used to measure women’s perceptions of quality of care. Chi-square test and t test were used to compare groups and to assess differences in perceptions; and linear regression was applied to assess confounding effects of socio-demographic factors. The mean score was compared for each item and separately for each dimension.

PLoS ONE 12(12): e0188554
https://doi.org/10.1371/journal.pone.0188554

Disability gaps in educational attainment and literacy - The price of exclusion : disability and education.

MALE, Chata
WODON, Quentin
December 2017

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This note provides an analysis of gaps in educational opportunities for children with disabilities. It also measures the impact at the margin of exclusion related to various types of disabilities on education outcomes for children. Four main outcomes are considered: whether children ever enroll in school, whether they complete their primary education, whether they complete their secondary education, and whether they are literate. The analysis is implemented using the most recent census data available for a total of 19 countries.

Inclusive and integrated mother, newborn and child health programming: Beyond mortality

OLCHINI, Davide
November 2017

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This policy paper describes the operational terms of Handicap International’s mandate and values as applied to Mother, Neonatal and Child Health (MNCH). Presenting the approaches and references underpinning Handicap International’s actions, choices and commitments, its purpose is to ensure consistency across its practices while taking account of different contexts. Intended as a document to guide programme staff, the paper defines the topic, describes the target populations and sets out the methods of intervention (activities and expected results) and the indicators used to monitor and evaluate. It also aims to ensure that Handicap International programmes implement all projects in accordance with the presented methods of intervention

 

The SDGs focus on a broader scope of activities and are thus slowly but surely shifting from mortality to address in a more comprehensive manner the well-being and achievement of maximum potential for children and adolescents. With a robust component in sexual and reproductive health, this represents a significant frame of reference for Handicap International’s work in MNCH as it has paved the way for integrating MNCH-related impairments into existing health services. The framework of the SDGs provides a clear vision of the importance of multi-sectorial interventions, which encompass the limit of vertically-organised health systems centred on curative aspects, to offer a more integrated and preventive package of interventions that include chronic conditions, impairments and health for all. After many years of implementing MNCH projects, Handicap International is well-positioned and firmly established as a major player in this process.

Towards Inclusion - A guide for organisations and practitioners

VAN EK, Vera
SCHOT, Sander
2017

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This guide is the result of collaboration between Light for the World (LFTW), Mission East (ME), and ICCO Cooperation.

Based on decades of experience of working with the most marginalized and excluded communities, the three organizations cooperated to record their experiences in a publication which can be used in a variety of relief and development contexts. ‘Towards Inclusion’ is designed to be an easy to use reference for organizational and program/project development with a focus on gender responsiveness and disability inclusion.

The guide is made up of three parts:
• the first part guides users through the process of organizational self-assessment to determine readiness to change and identify key steps towards becoming a more inclusive organization.
• the second part introduces the ACAP framework, as a means of improving inclusion in programming via Access, Communication, Attitude and Participation. A range of tools for measuring and improving inclusion at all stages of the project cycle are provided.
• the third part provides guidelines for the people or ‘change facilitators’ who will guide organizations through the process of change towards becoming more inclusive.

The publication can be found at “Towards Inclusion Guide” and the accessible version of the publication can be downloaded. Both are free of charge.

Possibilities for organisation trainings and/or webinars on the practical application of the guide are under consideration. Contact ACAP@gmail.com.

Disability and HIV

UNAIDS
August 2017

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This report highlights existing key evidence on the relationship between disability and HIV. It discusses the concrete steps needed for a person-centred, disability-inclusive HIV response that allows for increased participation of people with disabilities and integrates rehabilitation within the continuum of HIV care. Globally, it is estimated that 1 billion people (15% of the world’s population) have a disability. Of those aged over 15 years, approximately 110–190 million (2.2–3.8%) experience significant disabilities. Disability is increasing in prevalence due to ageing populations, trauma, accidents and the increase in chronic health conditions, including HIV. Persistent discrimination against and exclusion of people with disabilities, in particular women and girls with disabilities, increases their vulnerability, including their risk of HIV infection.
 

Policy development: An analysis of disability inclusion in a selection of African Union policies

GROCE, Nora
LANG, Raymond
SCHNEIDER, Marguerite
KETT, Maria
COLE, Ellie
July 2017

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Contemporary debates in international development discourse are concerned with the non‐tokenistic inclusion and participation of marginalized groups in the policy‐making process in developing countries. This is directly relevant to disabled people in Africa, which is the focus of this article. The United Nations Convention on the Rights of Persons with Disabilities delineates the principles of inclusion in society. Furthermore, the African Union (AU) plays a key role in advising its Member States about disability issues, and this advice should be reflected in disability‐inclusive policies. This article analyses nine policy or strategy documents produced by the AU, covering the policy domains of education, health, employment and social protection that are crucial to the inclusion of disabled people in international development. These were analysed according to seven discrete elements (rights, accessibility, inclusivity, implementation plans, budgetary allocations, enforcement mechanisms or disaggregated management information systems) using a rating scale of one to four, with four being the highest level of inclusion. The process (for example, level of consultation), the context (for example, the Sustainable Development Goals) and actors involved in the policy development were reviewed as far as was possible from the documents.

Dev Policy Rev. July 2017
https://doi.org/10.1111/dpr.12323

Healthcare provider's attitude towards disability and experience of women with disabilities in the use of maternal healthcare service in rural Nepal

DEVKOTA, Hridaya Raj
KETT, Maria
GROCE, Nora
MURRAY, Emily
June 2017

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BACKGROUND:
Women with disabilities are less likely to receive maternal healthcare services compared to women without disabilities. While few studies have reviewed healthcare experience of women with disabilities, no studies have been conducted to understand provider's attitude towards disability in Nepal, yet the attitude and behaviour of healthcare providers may have a significant influence on aspects of care and the use of service by women with disabilities. This study examines healthcare provider's attitudes towards disability and explores the experience of women with disabilities in maternal healthcare service utilization during pregnancy and childbirth.

METHOD:
The study used mixed method approach. An attitude survey was conducted among 396 healthcare providers currently working in public health facilities in Rupandehi district of Nepal. For additional insight, eighteen in-depth interviews with women with disabilities who used maternal healthcare services in a healthcare facility within the study district in their last pregnancy were undertaken. The Attitude Towards Disabled Persons (ATDP) scale score was used to measure the attitudes of healthcare providers. For quantitative data, univariate and multivariate analysis using ANOVA was used to understand the association between outcome and independent variables and qualitative analysis generated and described themes.

Reproductive Health, 2017

Extra costs of living with a disability: A review and agenda for research

MITRA, Sophie
PALMER, Michael
KIM, Hoolda
MONT, Daniel
GROCE, Nora
April 2017

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Background
There has been a growing interest in disability and poverty on the international research and policy stages. Poverty assessments for persons with disabilities may be affected by the experience of extra costs associated with a disability.

Objective
This article provides a systematized review of the global literature on the direct costs associated with living with a disability at the individual or household level.

Methods
We searched three databases for peer-reviewed journal articles that estimated extra costs associated with disability: Econlit, SocIndex and PubMed.

Results
We found 20 such studies conducted in 10 countries. These studies were predominantly from high-income countries. Although studies were heterogeneous (e.g., in terms of disability measures and cost methodologies), estimated costs were sizeable and some patterns were consistent across studies. Costs varied according to the severity of disability, life cycle and household composition. Highest costs were observed among persons with severe disabilities, and among persons with disabilities living alone or in small sized households.

Disability and Health Journal
Volume 10, Issue 4, October 2017, Pages 475-484
https://doi.org/10.1016/j.dhjo.2017.04.007

HIV/AIDS knowledge, attitudes and behaviour of persons with and without disabilities from the Uganda Demographic and Health Survey 2011: Differential access to HIV/AIDS information and services

ABIMANYI-OCHOM, Juie
MANNAN, Hasheem
GROCE, Nora
McVEIGH, Joanne
April 2017

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Uganda is among the first to use the Washington Group Short Set of Questions on Disability to identify persons with disabilities in its Demographic and Health Survey. In this paper, we review the HIV Knowledge, Attitudes and Behaviour component of the 2011 Ugandan Demographic and Health Survey, analysing a series of questions comparing those with and without disabilities in relation to HIV/AIDS knowledge, attitudes and practices. We found comparable levels of knowledge on HIV/AIDS for those with and those without disabilities in relation to HIV transmission during delivery (93.89%, 93.26%) and through breastfeeding (89.91%, 90.63%), which may reflect increased attention to reaching the community of persons with disabilities. However, several gaps in the knowledge base of persons with disabilities stood out, including misconceptions of risk of HIV infection through mosquito bites and caring for a relative with HIV in own household (34.39%, 29.86%; p<0.001; 91.53%, 89.00%; p = 0.001, respectively). The issue is not just access to appropriate information but also equitable access to HIV/AIDS services and support. Here we found that persons with multiple disabilities were less likely than individuals without disabilities to return to receive results from their most recent HIV test (0.60[0.41–0.87], p<0.05). HIV testing means little if people do not return for follow-up to know their HIV status and, if necessary, to be connected to available services and supports. Additional findings of note were that persons with disabilities reported having a first sexual encounter at a slightly younger age than peers without disabilities; and persons with disabilities also reported having a sexually transmitted disease (STD) within the last 12 months at significantly higher rates than peers without disabilities (1.38[1.18–1.63], p<0.01), despite reporting comparable knowledge of the need for safer sex practices. This analysis is among the first to use HIV/AIDS-related questions from Demographic Health Surveys to provide information about persons with disabilities in Uganda in comparison to those without disabilities. These findings present a more complex and nuanced understanding of persons with disabilities and HIV/AIDS. If persons with disabilities are becoming sexually active earlier, are more likely to have an STD within the preceding 12 month period and are less likely to receive HIV test results, it is important to understand why. Recommendations are also made for the inclusion of disability measures in Uganda’s AIDS Indicator Survey to provide cyclical and systematic data on disability and HIV/AIDS, including HIV prevalence amongst persons with disabilities.

PLoS ONE 12(4): e0174877
https://doi.org/10.1371/journal.pone.0174877

Counting disability: emerging consensus on the Washington Group questionnaire

GROCE, Nora
MONT, Daniel
2017

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The issuing of a statement by the Interagency and Expert Group on Sustainable Development Goal (SDG) Indicators in Geneva, a group of leading UN agencies, civil society actors, and independent experts strongly supporting the Washington Group on Disability Statistics’ Short Set of Questions (WGSS) is noted and a short explanation of the questions is provided.

 

The Lancet Global Health VOLUME 5, ISSUE 7, PE649-E650, JULY 01, 2017

https://doi.org/10.1016/S2214-109X(17)30207-3

CRPD Course (with an emphasis on how users and survivors of psychiatry can use the CRPD to advance our human rights)

Tina Minkowitz
March 2017

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The Convention on the Rights of Persons with Disabilities is a watershed in the human rights of users and survivors of psychiatry. This course is offered with an emphasis on how users and survivors of psychiatry can use the CRPD to advance human rights of persons with disabilities.

 

The Convention of course guarantees the rights of all persons with disabilities, in all their diversity.  Major constituencies organized at the international level included the World Network of Users and Survivors of Psychiatry, World Federation of the Deaf, World Blind Union, World Federation of the Deafblind, Inclusion International (persons with intellectual disabilities and their families), International Federation of Hard of Hearing Persons, and Disabled Peoples’ International (cross-disability).  They organized all disabled people’s organizations and allies into the International Disability Caucus, and aimed for the Convention to be equally relevant to all persons with disabilities irrespective of the type of disability or geographical location.  Every constituency finds what it needs in the text, and the Convention can be approached from a number of different starting points to uncover its potential.

 

The course is taught by Tina Minkowitz, Esq., a human rights lawyer and survivor of psychiatry who was instrumental in developing the relevant provisions.  She represented the World Network of Users and Survivors of Psychiatry (WNUSP) in the drafting and negotiation of the CRPD, and subsequently founded the Center for the Human Rights of Users and Survivors of Psychiatry (CHRUSP).

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