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Living in Chains - Shackling of people with psychosocial disabilities worldwide

HUMAN RIGHTS WATCH
English
October 2020

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In order to show the scale and scope of shackling of people with real or perceived psychosocial disabilities worldwide, Human Rights Watch conducted a study of mental health legislation, relevant policies, and practices across 60 countries around the world.

This report includes research and testimonies collected by 16 Human Rights Watch researchers in their own countries. We worked closely with partner organizations to visit private homes and institutions in Afghanistan, Burkina Faso, Cambodia, Ghana, Indonesia, Kenya, Liberia, Mexico, Mozambique, Nigeria, Sierra Leone, Palestine, Russia, the selfdeclared independent state of Somaliland, South Sudan, and Yemen. Human Rights Watch researchers interviewed more than 350 people with psychosocial disabilities, including those who were shackled at the time of research or had been shackled at least once in their lives, and more than 430 family members, caregivers or staff working in institutions, psychiatrists, psychologists, nurses and other mental health professionals, faith healers, lawyers, government officials, representatives of local nongovernmental organizations (NGOs), including organizations of persons with disabilities, and disability rights advocates. The testimonies were collected between August 2018 and September 2020 through in-person and phone interviews.

Desk research and consultation with international disability experts was also undertaken

"Autism is me": an investigation of how autistic individuals make sense of autism and stigma

BOTHA, Monique
DIBB, Bridget
FROST, David M
English
2020

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There are many different perspectives for understanding autism. These perspectives may each convey different levels of stigma for autistic individuals. This qualitative study aimed to understand how autistic individuals make sense of their own autism and experience the stigma attached to autism. The study used critical grounded theory tools. Participants (N1⁄420) discussed autism as central to their identity, and integral to who they are. While participants thought of autism as value neutral, they expressed how society confers negative meanings onto autism, and thus, them. The findings also indicate that different understand- ings of autism confer different levels of stigma. Participants expressed constant exposure to stigma and managed this stigma in different ways. Such methods included reframing to more positive understandings of autism, the reclamation of language, and using concealment and disclosure stra- tegically. The implications of these findings are discussed further in the article.

Employment of young people with mental health conditions: making it work

SUBRAMANIAM, Mythily
ZHANG, Yunjue
SHAHWAN, Shazana
VAINGANKAR, Janhavi Aijt
SATGHARE, Patrika
LIN TEH, Wen
ROYSTONN, Kumarasan
MING JANRIUS GOH, Chong
MANIAM, Yogeswary
LIANG TAN, Zhuan
TAY, Benjamin
VERMA, Swapna
ANN CHONG, Siow
English
2020

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Purpose: The current study was undertaken to understand and describe the meaning of work as well as the barriers and facilitators perceived by young people with mental health conditions for gaining and maintaining employment.


Materials and Methods: Employing a purposive and maximum variation sampling, 30 young people were recruited and interviewed. The respondents were Singapore residents with a mean age of 26.8 years (SD 1⁄4 4.5, range 20–34years); the majority were males (56.7%), of Chinese ethnicity (63.3%), and employed (73.3%), at the time of the interview. Verbatim transcripts were analysed using inductive the- matic analysis.

 

Results: Three global themes emerged from the analyses of the narratives, which included (i) the mean- ing of employment, (ii) barriers to employment comprising individual, interpersonal and systemic difficul- ties and challenges participants faced while seeking and sustaining employment and (iii) facilitators of employment that consisted of individual and interpersonal factors that had helped the young persons to gain and maintain employment.

 

Conclusions: Stigma and discrimination emerged as one of the most frequently mentioned employment barriers. These barriers are not insurmountable and can be overcome both through legislation as well as through the training and support of young people with mental health conditions.

A country report: impact of COVID-19 and inequity of health on South Korea’s disabled community during a pandemic

LEE, Seungbok
KIM, Jongbae
English
2020

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The South Korean media boasts of its leading success–during the escalation of the coronavirus outbreak–in flattening of the curve thereby mitigating the grave outcomes of the public health crisis. Much of the success is reportedly attributed to the rapid and advanced development of test kits, essential equipment and implementation of protocols in precautionary measures. However, it has been an arduous task to stay afloat for one particular vulnerable community. The disabled citizens of Korea were confronted by the realities of health inequity during this disastrous period. Pre-existing the pandemic onset, the disabled community have faced stigmatization and under many circumstances de-prioritization by their own society. Through the lense of a visiting physician, my hope is to poignantly and respectfully share personal experiences and thoughts on these realties impacted by the COVID-19 pandemic in South Korea.

Inclusion, access, and accessibility of educational resources in higher education institutions: exploring the Ethiopian context

BEYENE, Wondwossen Mulualem
MEKONNEN, Abraham Tulu
GIANNOUMIS, George Anthony
English
2020

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The right of persons with disabilities for equal access to education and educational resources is enshrined by international and country-specific anti-discrimination laws. Taking the Ethiopian context as an example, this paper sought to identify barriers of access to educational resources and explored ways for removing them. Seventeen students with visual impairments studying at Hawassa University were selected for semi-structured interviews. Moreover, five individuals working at the disability centre and the university library were interviewed. The results of the interviews were analysed thematically using the International Classification of Functioning, Disabilities and Health (ICF) as a framework. Access and accessibility problems that emanate from the learners’ diverse background, lack of educational resources in alternative formats, lack of institutional tools (policy, procedure, guidelines, etc.) to bridge the gap between law and practice, and the digital divide were among the problems identified and discussed. At the end, the paper showed how libraries, revitalised as learning and information commons, could help to ensure the accessibility of educational resources and help learners with disabilities to acquire skills that may help them in their studies and their future undertakings.

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

AUSTIN, Vicki
CAREW, Matthew
MIRZOYANTS, Anastasia
BARBARESCHI, Giulia
English
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

Dimensions of invisibility: insights into the daily realities of persons with disabilities living in rural communities in India

GUPTA, Shivani
DE WITTE, Luc P
MEERSHOEK, Agnes
English
2020

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Persons with disabilities in rural India do not have the opportunity to lead a self-determined life and be included in their community as required by the convention on the rights of persons with disabilities. To investigate their experience of living everyday life and the amount of agency they are able to exercise, in-depth interviews were undertaken. The Capability Approach (CA) was used to ana- lyse the situation that was seen in terms of outcome of the interplay between internal and external factors resulting in loss of agency. The results show that the dependency they experience due to lack of adequate support to undertake activities and being completely dependent on the family places them in a vicious circle of ‘self-worthlessness’. Reducing the dependency disabled people face and chang- ing perceptions of the community towards disability may break this circle.

The social and human rights models of disability: towards a complementarity thesis

LAWSON, Anna
BECKETT, Angharad E
English
2020

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This article aims to reorient thinking about the relationship between the long-standing social model of disability and the rapidly emerging human rights model. In particular, it contests the influential view that the latter develops and improves upon the former (the improvement thesis) and argues instead that the two models are complementary (the complementarity thesis). The article begins with a discursive analysis of relevant documents to investigate how each of the two models has been used in the crafting and monitoring of the UN Convention on the Rights of Persons with Disabilities. This highlights the increasing importance of the human rights model in this policy context. It also provides examples of the operation of the two models which inform the remainder of the discussion. We then critique the comparisons between the models which underpin the improvement thesis; and, drawing on Foucault’s technologies of power and Beckett and Campbell’s ‘oppositional device’ methodology, deepen and develop this comparative analysis. The result, we argue, is that the two models have different subjects and different functions. In the human rights context, their roles are complementary and supportive.

Disability Inclusive Development - Kenya Situational Analysis

ROHWERDER, Brigitte
English
June 2020

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This situational analysis (SITAN) addresses the question: “what is the current situation for persons with disabilities in Kenya?”. It has been prepared for the Disability Inclusive Development programme (which works on access to education, jobs, healthcare, and reduced stigma and discrimination for persons with disabilities in Bangladesh, Jordan, Kenya, Nepal, Nigeria, and Tanzania), to better understand the current context, including COVID-19, and available evidence in Kenya. It will be helpful for anyone interested in disability inclusion in Kenya, especially in relation to stigma, employment, education, health, and humanitarian issues. This SITAN has been briefly updated from the April 2019 SITAN.

Disability Inclusive Development - Tanzania Situational Analysis

ROHWERDER, Brigitte
English
June 2020

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This situational analysis (SITAN) addresses the question: “what is the current situation for persons with disabilities in Tanzania?”. It has been prepared for the Disability Inclusive Development programme (which works on access to education, jobs, healthcare, and reduced stigma and discrimination for persons with disabilities in Bangladesh, Jordan, Kenya, Nepal, Nigeria, and Tanzania), to better understand the current context, including COVID-19, and available evidence in Tanzania. It will be helpful for anyone interested in disability inclusion in Tanzania, especially in relation to stigma, employment, education, health, and humanitarian issues. This SITAN has been briefly updated from the April 2019 SITAN.

Disability Inclusive Development - Bangladesh Situational Analysis

THOMPSON, Stephen
English
June 2020

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This situational analysis (SITAN) addresses the question: “what is the current situation for persons with disabilities in Bangladesh?”. It has been prepared for the Disability Inclusive Development programme (which works on access to education, jobs, healthcare, and reduced stigma and discrimination for persons with disabilities in Bangladesh, Jordan, Kenya, Nepal, Nigeria, and Tanzania), to better understand the current context, including COVID-19, and available evidence in Bangladesh. It will be helpful for anyone interested in disability inclusion in Bangladesh, especially in relation to stigma, employment, education, health, and humanitarian issues.

Disability Inclusive Development - Nigeria Situational Analysis

THOMPSON, Stephen
English
June 2020

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This situational analysis (SITAN) addresses the question: “what is the current situation for persons with disabilities in Nigeria?”. It has been prepared for the Disability Inclusive Development programme (which works on access to education, jobs, healthcare, and reduced stigma and discrimination for persons with disabilities in Bangladesh, Jordan, Kenya, Nepal, Nigeria, and Tanzania), to better understand the current context, including COVID-19, and available evidence in Nigeria. It will be helpful for anyone interested in disability inclusion in Nigeria, especially in relation to stigma, employment, education, health, and humanitarian issues.

Fragmented yet together: the disability movement in Sierra Leone

VAN DEN BRINK, Amélie
ELBERS, Willem
IBRAHIM, Aisha Fofana
English
2020

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The on-going struggles of disability movements worldwide have been examined from multiple perspectives. As of yet, however, research into this topic has largely overlooked experiences on the African continent. This article seeks to address this gap by presenting a case study of the disability movement in Sierra Leone, West Africa. The study finds that on the one hand the Sierra Leonean disability movement is fragmented (referring to the tendency of groups to work individually as opposed to operating in a collective manner), thus limiting synergy. Three main ‘centrifugal’ forces underlying fragmentation are identified: resource scarcity, impairment specific interests and capacity differences between impairment types. On the other hand, the movement somehow manages to survive and even achieve modest successes. The research shows that interdependence, shared experiences of marginalization, and a clear identification of the ‘other’ have a unifying effect.

  • The disability movement in Sierra Leone is fragmented, meaning it struggles to formulate a unified position and act collectively, yet somehow survives and even manages to achieve some successes;
  • The fragmentation is fueled by competition between groups, a hierarchy between impairment types and interests that are impairment specific.
  • The movement is kept together by mutual dependence to achieve key goals and raise funds, shared experiences of marginalization and negative experiences with ‘outsiders’.
  • The research offers recommendations to disability groups and donors to mitigate fragmenting forces while strengthening unifying forces.

Loneliness in life stories by people with disabilities

TARVAINEN, Merja
English
2020

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This study investigates loneliness in life stories by people with disabilities. By approaching loneliness from a relational perspective, this study attempts to illustrate how loneliness and disability are intertwined in the life course. The research question was as follows: How do people with disabilities understand loneliness in their life stories? Life story data ‘Life of Disabled Persons in Finland 2013–2014’ was analysed with a narrative life course approach. Loneliness was narrated in accordance with normative life course expectations. People with disabilities narrated loneliness as unbelonging in childhood, disjointed youth and disaffiliation to normative institutions in adulthood. This study suggests that relation between loneliness and disability concern the conditions of inclusion that is the conditions of living and telling.

  • Loneliness involves both unwanted emotions and social isolation. 
  • In many societies, both loneliness and disability bear a stigma. This so-called double stigma affects the lives of people with disabilities.
  • This study explores loneliness and disability in life stories by people with disabilities in Finland from a life course perspective. Although scholars have widely studied loneliness in Finland, they have not studied loneliness in people with disabilities in any great depth.
  • Loneliness in life stories by people with disabilities was narrated in relation to a sense of bodily difference and occurred as a disconnection from a socially ‘standard’ life course. Loneliness was located within three main phases: childhood, youth and adulthood. Negative attitudes towards disability feed social isolation and emotional loneliness.
  • Further research on disability and loneliness throughout the life course as well as more discussion about the conditions of inclusion and the emotional patterns of social relations are needed.

Aesthetics and the perceived stigma of assistive technology for visual impairment

DOS SANTOS, Aline Darc Piculo
FERRARI, Ana Lya Moya
MEDOLA, Fausto Orsi
SANDNES, Frode Eika
English
2020

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Purpose: 

The aim of this study was to identify factors that influence the perceived stigma of two assistive devices for visual impairment, namely the white cane and smart glasses.

 

Method: 

Face-to-face semi-structured interviews with eight European students were conducted to probe their experiences and knowledge related to disability, assistive technology, visual impairment, as well as handheld and wearable devices.

 

Results: 

Close relationships with disabled people seems to have a positive influence on participants perceptions about stigma, disability, and assistive technology. Academic background seems to not have any influence. The aesthetics of assistive devices was observed as an important factor that influences the adoption or abandonment of the device.

 

Conclusion: 

Device without negative symbolism but with modern aesthetics (smart glasses) were positively accepted by the participants than the device with traditional aesthetics and symbolisms of visual impairment (white cane). Designers should, therefore, consider aesthetics in addition to functionality in order to avoid the perceived stigma, thereby reducing the chances of device abandonment.

The impacts of COVID-19 on people with disabilities: a rapid review. Disability Inclusion Helpdesk Query No: 35

MEANIE-DAVIS, Jessie
LEE, Harri
CORBY, Nick
English
April 2020

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There is currently very limited data and evidence on the impacts of COVID-19 on people with disabilities and pre-existing health conditions, with no disability-disaggregated data on mortality rates available in the public sphere. However, reports from the media, disability advocates and disabled peoples’ organisations (DPOs) point to several emerging impacts, including primary and secondary impacts including on health, education, food security and livelihoods.  Most of the available data is from high income countries (HICs) though reports from low- and middle-income countries (LMICs) are likely to emerge. Evidence was gathered by a rapid desk based review. Gaps are identified. 

 

The section concerned with lessons drawn from similar epidemics draws heavily on lessons learned from the Ebola outbreak in West Africa in 2014-2016, and touches on lessons from the Zika outbreak in 2015-2016 and the SARS pandemic in the early 2000s.10 It also touches briefly on SARS, MERS and H1N1 (swine flu). 

 

Primary and secondary impacts of COVID-19 on people with disabilities are reviewed.


People with disabilities are disproportionately impacted by COVID-19 not only because it can exacerbate underlying medical conditions, but because of attitudinal, environmental and institutional barriers to their participation in and benefit from the pandemic response. For example, inaccessible public health messaging and healthcare facilities, and stigma and discrimination.

Disability Royal Commission: WWDA’s response to education and learning issues paper

SANDS, Therese
English
April 2020

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In 2019 the Disability Royal Commission released an issues paper on education and learning. The issues paper asked 13 questions based on some of the key issues and barriers experienced by students with disability.

Women With Disabilities Australia (WWDA) have now submitted their response to the issues paper which highlights key recommendations to improve the lives and experiences of students with disability. The recommendations stem from the following key areas:

  • Inclusive education
  • Intersectionality
  • Inequality and discrimination underpin violence
  • Restrictive practices – torture and ill-treatment
  • Exposing violence – desegregated data and intersectionality
  • Building strengths through inclusive education

Annotated bibliography: Disability and gender in low- and middle income countries (LMICs)

ROHWERDER, Brigitte
English
March 2020

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This annotated bibliography provides an overview and outlines key messages from a selected range of academic and practioner literature looking at gender and disability in low- and middle-income countries, which may help with planning for gender inclusion in programmes and projects. The papers included here are not intended to be an exhaustive list of all the relevant literature. A focus is placed literature looking at the main areas of work of the Disability Inclusive Development programme: stigma, livelihoods (which also applies to the Inclusion Works programme), education, and health, as well as humanitarian contexts. Literature which focuses solely on one of these areas has been included in the relevant sections, and those which address multiple areas are included in the first, overarching section on gender and disability. As is often the case, the literature on gender and disability in low- and middle-income countries has a tendency to focus mainly on the experiences of women and girls with disabilities. There is a lack of evidence relating to gender and disability in low- and middle-income countries, although more evidence is emerging as awareness of the importance of the issue grows.

 

People with disabilities face exclusion and discrimination on the grounds of both their gender and their disability, as well as other intersecting factors such as age, race, class or poverty. The intersectional nature of discrimination and inequality impacts all areas of life, from access to services, personal security, livelihoods and leisure, through to individual choice and autonomy. Women and girls with disabilities are more likely to face discrimination and exclusion than people without disabilities and compared with men and boys with disabilities. Their participation in education, livelihoods, and healthcare is challenges by barriers including stigma and cultural practices resulting in discrimination and prejudice, lack of accessible services, and lack of support from family, teachers and institutions - all of which are exacerbated by poverty. Women with disabilities are also at greater risk of physical, mental and sexual abuse and because of stigmatisation, have lower marriage prospects. Therefore, it is important to ensure the meaningful inclusion of women and men with disabilities in programming.

 

The annotated bibliography is broken down into;

1. Gender and disability in LMICs

2. Gender, disability, stigma, and violence

3. Gender, disability, employment and livelihoods

4. Gender, disability, and education

5. Gender, disability, and health

6. Gender, disability, and humanitarian response

7. Report information

 

The Inclusion Works programme (2018–2022), funded by the UK Department for International Development, aims to improve employment rates for people with disabilities in Bangladesh, Kenya, Nigeria, and Uganda. 

 

Disability Inclusive Development (DID), also funded by the UK Department for International Development, aims to improve the long-term well-being and inclusion of people with disabilities through increased equitable access to: Quality health services and health outcomes, Quality education and educational attainment, Jobs/self- employment and improved livelihoods and a reduction in negative stereotyping and discrimination in Bangladesh, Kenya, Nigeria, Tanzania, Jordan and Nepal.

 

The opinions expressed are those of the authors and do not necessarily reflect the views or policies of the UK government or members of the Inclusion Works consortium.

Being differently abled: Disability through the lens of hierarchy of binaries and Bitso-lebe-ke Seromo

LESHOTA, Paul L
SEFOTHO, Maximus M
English
February 2020

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Background: Despite its acceptability, the term disability has not been able to shirk the sense of incompleteness, lack, deprivation and incapacitation embodied in the prefix ‘dis-’. The current wave of anti-discrimination on disability issues, calls for constant re-examination of the language and the appellations we use in respect of people with disabilities.

 

Objectives: The aim of this study is to subject the term disability to some relevancy litmus test with a view to prevent it from acquiring Lyotard’s ‘grand narrative’ and to propose and argue for the term ‘differently abled’ because of its transformative and anti-discriminatory slant.

 

Method: The study took the form of a literature review using the optic of Derrida’s hierarchy of binaries and the Sesotho proverb, ‘Bitso-lebe-ke seromo’, (A bad name is ominous) to explore the connotations of the term disability as a disenfranchising social construct.

 

Results: Read through the lens of Derrida’s idea of difference, disability as a concept has no inherent meaning and its meaning derives from its being differentiated from other concepts. Viewed through the lens of Bitso-lebe-ke seromo and read in the context of its deep symbolical significance, the term disability holds immense spiritual power.

 

Conclusion: The study concludes that the term disability or disabled is exclusionary, stigmatizing, and anti-transformational. As such it embodies imperfection, incapacitation and inferiority. Not only is it ominous, it places upon people with disability the perpetual mark of unattractiveness. Against this background the term differently abled seems to convey more empowering overtones than the term disability.

 

 

African Journal of Disability, Vol 9, 2020 

Required to be creative. Everyday ways for dealing with inaccessibility

WÄSTERFORS, David
English
2020

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Today’s society promises that people with disabilities can access anything, but in practice there are numerous obstacles, and the ways in which people deal with them can be easily missed or taken for granted by policy makers. This article draws on a project in which researchers ‘go along’ people with disabilities in Sweden who demonstrate and recount accessibility troubles in urban and digital settings. They display a set of mundane methods for managing inaccessibility: (a) using others, (b) making deals and establishing routines, (c) mimicking or piggybacking conventions, (d) debunking others’ accounts and performing local politics. The employment of these shared but tailored methods shows the difficulties to be accepted that people with disabilities still face, as well as the wide-ranging tension that exists between the grand rhetoric of inclusion and modest results. The tension implies that people with disabilities are required to be creative.

  • Declarations and policies often say that people with disabilities should have access to anything, but in practice this is not the case.
  • This study investigates what people with disabilities actually do when they have trouble accessing various places or resources. The results show their common and practical ways, and these ways are often taken for granted, overlapping, and combined.
  • People with disabilities ask others to support them when they face troubles to access places or resources, they make deals with important actors and they develop routines. They also observe, imitate and follow others’ actions, to pick out precisely those ways that suit their needs.
  • When people with disabilities find their ways in today’s society they also act with words. They argue against other people’s excuses or justifications for not providing access.
  • The study has found a lot of frustration among people with disabilities who get blocked, excluded or delayed. This gives them motives to engage in politics.

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