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Disability, stigma & the role of innovation - Disability innovation live

AUSTIN, Vicki
CAREW, Matthew
MIRZOYANTS, Anastasia
BARBARESCHI, Giulia
August 2020

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This webinar focussed on the role of stigma in preventing disability inclusion, and what enables it to be overcome, focused on innovative and creative methods

The speakers talked about:

  • Culture, Paralympic legacy & how innovation can change mindsets
  • Stigma research incorporating the perspectives of persons with disabilities & disability inclusive research processes
  • Kenyan youth & the perception of people with disabilities
  • Assistive technology, identity & the role of innovation

Measuring Stigma related to People with Albinism in Tanzania: A Cultural Validation Study of the EMIC-CSS and SDS among Adults

DE GROOT, Tjitske
JACQUET, Wolfgang
MEURS, Pieter
PETERS, Ruth
2020

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Purpose: People with albinism in Tanzania are severely stigmatised. A measurement tool to assess this stigmatisation among adults is lacking. This research aimed at the cultural validation of two Scales to measure stigma related to albinism: The Albinism Social Distance Scale (A-SDS) and the Albinism Explanatory Model Interview Catalogue Community Stigma Scale (A-EMIC-CSS).

 

Method: Conceptual, item, semantic and operational equivalences were evaluated through focus groups and interviews. A pilot study among adults attending religious institutes, as a representation of Tanzanian society, was conducted to assess the measurement equivalence. There were 101 respondents for the test and 79 respondents for the re-test.

 

Results: Conceptual, item, semantic and operational equivalences of the Scales are sufficient. In terms of measurement equivalence, the internal consistency of the A-SDS and A-EMIC-CSS are adequate. However, social desirability should be taken into account when interpreting the findings.

 

Conclusion and Implications: The insights provided by this article can aid in the development of tools to measure stigma cross-culturally and across stigmatising conditions. The combination of the two Scales for short and long-term effect measurement is recommended.

Harmful cultural beliefs and practices, stigma and discrimination towards women and girls with disabilities: a toolkit for change

UNESCO OFFICE HARARE
UNITED NATIONS PARTNERSHIP TO PROMOTE THE RIGHTS OF PERSONS WITH DISABILITIES
2020

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This toolkit serves to highlight the intersection between gender, culture and disability. Following the completion of a study titled Advancing the rights of women and girls with disabilities in Zimbabwe, a review of the interface of culture, gender and disability in Zimbabwe, it was evident that there were cultural and social issues not being adequately addressed in communities. 

This toolkit was formulated based on the study findings, dialogue with key disability stakeholders and principles of the CRPD.

The following is a list of the key articles from the CRPD that form the base of this toolkit:

  • Article 3: General principles (8 in total)
  • Article 6: Women with disabilities
  • Article 8: Awareness raising
  • Article 13: Access to justice
  • Article 23: Respect for home and the family
  • Article 25: Health

This toolkit strives to empower the trainer and the trainee(s) on the virtues encapsulated in the CRPD by localizing the concepts at community level in Zimbabwe.

The Cultural Validation of Two Scales assessing Albinism - related Social Stigma among High School Students in Tanzania

GROOT, Tjitske de
PETERS, Ruth
BRAKEL, Wim van
MEURS, Pieter
JACQUET, Wolfgang
2019

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Purpose: Albinism in Tanzania causes fierce stigmatisation. Although various stigma reduction interventions (SRI) are employed, research on their effectiveness is lacking. This research aimed to develop a tool to measure albinism-related social stigma among high school students in Tanzania. Cultural equivalence was tested for the Explanatory Model Interview Catalogue Community Stigma Scale (EMIC-CSS) and Albinism Social Distance Scale for Adolescents (ASDS-A) assessing conceptual, item, semantic, operational and measurement equivalence.

 

Methods: The methods used were workshops, in-depth interviews, translation and re-translation, discussions, a test (n=337) re-test (n=142) of the survey, and follow-up focus group discussions (n=25).

 

Results: The Scales have proven to be adequate on all equivalences other than measurement equivalence. The reproducibility statistics raise questions that can be explained by characteristics of the sample.

 

Conclusion and Implications: The analysis provides insights for further validation of the Scales, contributes to the discussion about a universal stigma measurement tool and demonstrates the importance of validation studies of existing and proven tools used in a different context.

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

Societal attitude and behaviours towards women with disabilities in rural Nepal: pregnancy, childbirth and motherhood

DEVKOTA, Hridaya R.
KETT, Maria
GROCE, Nora
January 2019

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This study reviews the attitudes and behaviours in rural Nepalese society towards women with disabilities, their pregnancy, childbirth and motherhood. Society often perceives people with disabilities as different from the norm, and women with disabilities are frequently considered to be doubly discriminated against. Studies show that negative perceptions held in many societies undervalue women with disabilities and that there is discomfort with questions of their control over pregnancy, childbirth and motherhood, thus limiting their sexual and reproductive rights. Public attitudes towards women with disabilities have a significant impact on their life experiences, opportunities and help-seeking behaviours. Numerous studies in the global literature concentrate on attitudes towards persons with disabilities, however there have been few studies in Nepal and fewer still specifically on women.

A qualitative approach, with six focus group discussions among Dalit and non-Dalit women without disabilities and female community health volunteers on their views and understandings about sexual and reproductive health among women with disabilities, and 17 face-to-face semi-structured interviews with women with physical and sensory disabilities who have had the experience of pregnancy and childbirth was conducted in Rupandehi district in 2015. Interviews were audio-recorded, transcribed, and translated into English before being analysed thematically.

 

BMC Pregnancy Childbirth 19, 20 (2019)

https://doi.org/10.1186/s12884-019-2171-4

Mental health among Sami people with intellectual disabilities

GJERTSEN, Hege
2019

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The first living condition-survey among people with intellectual disability in Sami areas in Norway was conducted in 2017. The purpose of this article is to present and discuss results from the living-condition study, with a focus on the results related to mental health and bullying as a risk factor for poor mental health among people with intellectual disability and a Sami background. We have conducted a questionnaire survey among people with intellectual disability in Sami areas, with and without a Sami background (N = 93). People with intellectual disability have poorer mental health compared to the population in general and those with Sami background have the poorest mental health. Bullying is one of several factors that increase the risk of poor mental health among people with intellectual disability and Sami background. Having a Sami background makes people with intellectual disability more disposed to poor mental health.

Disability stigma in developing countries

ROHWERDER, Brigitte
May 2018

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This K4D helpdesk report, commissioned by UK DFID, answers the question "What are the core drivers behind stereotypes, prejudice (including pity/shame etc), and harmful practices against persons with disabilities in developing countries and what promising strategies/pathways for addressing these drivers have been identified?" using desk research.

 

Across the world stereotypes, prejudice, and stigma contribute to the discrimination and exclusion experienced by people with disabilities and their families in all aspects of their lives. This rapid review looks at available evidence on the drivers of disability stigma in developing countries, and promising strategies for addressing these. Most of the available evidence uncovered by this rapid review comes from Sub-Saharan Africa, and is from a mix of academic and grey literature. Evidence gaps remain. The available literature has focused more on studying the victims of stigmatisation than the stigmatisers. 

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

The grace of motherhood: disabled women contending with societal denial of intimacy, pregnancy, and motherhood in Ethiopia

TEFERA, Belaynesh
VAN ENGEN, Marloes
VAN DER KLINK, Jac
SCHIPPERS, Alice
2017

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This study aimed to provide better understanding of intimacy and marriage, pregnancy, birth, and motherhood experiences of women with disability in Ethiopia. Qualitative, in-depth, and semi-structured interviews along with personal observations were used to explore the full experiences of participants, as told in their own words. The result of the interviews indicated that relationships and motherhood proved a very rewarding option for women with disabilities. They also expressed their need for intimacy regardless of society’s denial. Challenges identified include negative societal attitudes toward women with disabilities regarding relationship, pregnancy, and child-rearing. Accessibility of health centers in addition to the ignorance and negative attitudes of the physicians are also reported to be major challenges for the interviewees. This study highlights how rewarding the experience of motherhood was for the interviewees and also shows that women with disabilities face challenges at every step of their experiences, because of society’s prejudices toward disability.

Towards a new directional turn? Directors with cognitive disabilities

SCHMIDT, Yvonne
2017

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Drawing from my first-hand observations and embodied experiences of having collaborated with HORA over the course of several years, this paper discusses an under-investigated area within the field of disability and performance: pioneering work by directors and with learning or cognitive disabilities, an area which has not yet been addressed in the expanding field of disability and performance studies.

Normality and disability: intersections among norms, law, and culture

GOGGIN, Gerald
STEELE, Linda
CADWALLADER, Jessica
April 2017

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The central aim of this anthology of papers is to consider the place of law in political, social, scientific and biomedical developments relating to disability and other categories of ‘abnormality’. The papers consider how categories of abnormality relate to the privileged and frequently unmarked position of ‘normality’ and how legal interventions in abnormality relate to existing normative designations in the dominant cultural imaginary. This collection of papers has a range of disciplinary approaches

Paper titles:

  • Fit or fitting in: deciding against normal when reproducing the future
  • Eccentricity: the case for undermining legal categories of disability and normalcy
  • Eugenics and the normal body: the role of visual images and intelligence testing in framing the treatment of people with disabilities in the early twentieth century
  • The construction of access: the eugenic precedent of the Americans with Disabilities Act
  • Disability and torture: exception, epistemology and ‘black sites’
  • Mental capacity and states of exception: revisiting disability law with Giorgio Agamben
  • Not just language: an analysis of discursive constructions of disability in sentencing remarks
  • Policing normalcy: sexual violence against women offenders with disability
  • ‘The government is the cause of the disease and we are stuck with the symptoms’: deinstitutionalisation, mental health advocacy and police shootings in 1990s Victoria
  • Disruptive, dangerous and disturbing: the ‘challenge’ of behaviour in the construction of normalcy and vulnerability
  • Making the abject: problem-solving courts, addiction, mental illness and impairment
  • Cripwashing: the abortion debates at the crossroads of gender and disability in the Spanish media
  • ‘Figurehead’ hate crime cases: developing a framework for understanding and exposing the ‘problem’ with ‘disability’

Continuum 

Journal of Media & Cultural Studies, Vol.31, No.3, pp. 337-340

http://dx.doi.org/10.1080/10304312.2017.1275077

Toolkit on disability for Africa

UNITED NATIONS DEPARTMENT OF ECONOMIC AND SOCIAL AFFAIRS (UNDESA)
November 2016

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A Toolkit on Disability for Africa has been developed by the United Nations Department of Economic and Social Affairs (UNDESA), Division for Social Policy and Development (DSPD). It is designed for the African context and aims to:

  • Provide practical tools on various disability-related issues to government officials, members of parliament, civil and public servants at all levels, disabled persons organizations (DPOs) and all those with an interest in the inclusion of persons with disabilities in society and development;
  • Support the implementation of the UN Convention on the Rights of Persons with Disabilities (UNCRPD) and disability-inclusive development;
  • Offer examples of good practices from many countries in the African region.

 

Toolkit Modules:

  • UN DESA toolkit on CRPD – Trainers’ tips
  • Introducing the UNCRPD
  • Frameworks for implementing and monitoring the UNCRPD
  • Disability-inclusive development
  • Accessibility
  • Building multi-stakeholders partnerships for disability inclusion
  • National plans on disability
  • Legislating for disability rights
  • Access to justice for persons with disabilities
  • The rights of persons with disabilities to work
  • Inclusive health services for persons with disabilities
  • Participation in political and public life
  • Information and communication technology (ICT) and disability
  • Culture, beliefs, and disability
  • Inclusive education

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

Being black in a white skin: Beliefs and stereotypes around albinism at a South African university

PHATOLI, Relebohile
BILA, Nontembeko
ROSS, Eleanor
2015

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Background: Partly because of the legacy of apartheid, and despite being a constitutional democracy, South Africa continues to be a deeply divided society, particularly along racial lines. In this context many people with albinism do not fit neatly into black and white categories and are likely to experience social discrimination and marginalisation.

 

Objectives: The study endeavoured to explore the beliefs and practices regarding albinism within a South African university, and the availability of support services.

 

Method: The research was located within an interpretive qualitative paradigm and was framed within the theories of stigma, discrimination and ‘othering’. Interviews were conducted with five students with albinism and 10 students without albinism.

 

Results: Findings confirmed the existence of myths and stereotypes regarding albinism. Students with albinism tended to exclude themselves from the rest of the student community to avoid discrimination and stereotypes around their condition.

 

Conclusion: People with albinism can teach us about social constructions of race, colour and relations between minority groups and the majority culture. Results have implications for schools, disability units at universities, and albinism societies in terms of opening up channels of communication between people with albinism and the general public and fostering knowledge and awareness thereof.

Nigerian Realities: Can we ignore Traditional Leadership in developing successful CBR?

VERMEER, Bertine
CORNIELJE, Marije T
CORNIELJE, Huib
POST, Erik B
IDAH, Mike A
2015

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Purpose: To study the role of traditional leaders (Sarakuna) who provide a form of social welfare for persons with disabilities in the Hausa society of Northern Nigeria. From the results of this study, lessons are derived for cooperation with Sarakuna in (emerging) Community Based Rehabilitation programmes.

 

Methods: A literature study was done using different (non-)electronic sources. In addition, 26 semi-structured interviews were conducted with different stakeholders (e.g., non-governmental organisations, disabled people’s organisations), and 8 focus group discussions were held with (leaders of) persons with a disability. Question-led analysis was utilised by considering 4 dimensions: rehabilitation outcomes, rehabilitation services, involvement of beneficiaries, and social acceptability.

 

Results: Not much literature is available on the role of traditional leadership in rehabilitation programmes and social welfare. Nevertheless, this study found indications that traditional leadership is still present in contemporary NorthernNigeria. Some Sarakuna improve the socio-economic position of persons with disabilities by functioning as mediators and by their ability to provide social insurance. Their cooperation with multiple stakeholders enables them to distribute food and clothes. Also, since they possess essential information, NGOs are helped to access the community of persons with disabilities. Sarakuna are in a position to promote the inclusion and rehabilitation of persons with disabilities, but often lack necessary skills and training; yet, Community Based Rehabilitation programmes often ignore them.

 

Conclusions and Implications: Community Based Rehabilitation programmes should take better note of social contexts and therefore should also work in the specific context of traditional leadership. In this way, rehabilitation programmes are more likely to meet the expectations of persons with disability.

Disability under occupation : at the congruence between conflict, religion, & society in Palestine

RASHID, Omar
January 2015

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A dissertation on the Palestinian experience of disability under Israeli territorial occupation. The following key research questions were considered under this dissertation. "First, to locate the perceptions of disability among the disabled in the occupied territories of Palestine, in light of their religious affiliation. Second, to investigate the realities of the disabled within Palestine; and third, to enquire as to whether there had been any differences in the perceptions of disabilities and the realities of those who were injured in conflict, and those who were born with impairment" These questions were answered through a hybrid-methods system of research, with a mix of qualitative and quantitative methods being used

 

Dissertation submitted in part fulfilment of the requirements for a Masters degree at the University of Birmingham

The user has given permission for the original dissertation document to be uploaded to be reproduced and made publicly available on the Source website

OHCHR Report 2012

UNITED NATIONS OFFICE OF THE HIGH COMMISSIONERS FOR HUMAN RIGHTS (OHCHR)
May 2013

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This comprehensive report presents OHCHR’s role, work, structure, managerial outputs, finance and expenditure. It details information about the focuses of their work on various thematic issues including: discrimination; immunity and the rule of law; poverty and economic, social and cultural rights; migration; violence and insecurity; and human rights mechanisms. The report highlights OHCHR’s progress towards the expected accomplishments illustrated by numerous results
Note: CD is also available

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