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‘Teachers Did Not Let Me Do It.’: Disabled Children’s Experiences of Marginalisation in Regular Primary Schools in China

WANG, Yuchen
2021

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The large-scale mainstreaming of disabled children in education in China was initiated with the launching of a national policy called ‘Learning in Regular Classrooms’ in the late 1980s. More than thirty years on, and little is known about disabled children’s daily experiences in regular schools due to a lack of research that foregrounds their voices. This paper reports the main findings from an ethnographic study conducted in 4 state- funded primary schools in Shanghai involving 11 children labelled as having ‘intellectual disabilities’, 10 class teachers and 3 resource teachers. Data were collected through participant observation, semi-structured interviews, and child-friendly participatory activities, and thematically analysed to identify patterns in practices and beliefs that underpin the processes of inclusion and exclusion. The research found that the child participants were facing marginalisation in many aspects of school life with rather limited participation in decision-making. The exclusionary processes were reinforced by a prevailing special educational thinking and practice, a charitable approach to the disadvantaged in a Confucian society, and an extremely competitive and performative schooling culture. The findings address the need to hear disabled children’s voices to initiate a paradigm shift in understanding and practice to counterbalance deep-rooted barriers. The paper concludes with suggestions for future research.

The protection situation during COVID-19 in Syria. The impact of COVID-19 on protection activities and on vulnerable groups

PROTECTION CLUSTER, UNHCR
February 2021

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After nearly nine months of preventative COVID-19 measures in place by the Government of Syria, the protection sector and its area of responsibilities ( Child Protection AoR, Gender Based Violence AoR and Mine Action AoR) have attempted to understand the level and types of impact this has had on the implementation of activities, specifically on partners' ability to provide services through community centers, and on the most vulnerable groups of the served population. The aim is that this report will provide protection partners with key information for reviewing and revising their current activities in light of the ongoing pandemic.

The data presented in this report was gathered during December 2020 from 213 protection partners and staff working directly or through partners with the affected population throughout Syria through an online survey. The main protection issues affecting persons with disabilities as a result of COVID-19 situation are identified.

What Constitutes Good Quality End-of-Life Care? Perspectives of People With Intellectual Disabilities and Their Families

CITHAMBARM, Kumaresan
DUFFY, Mel
COURTNEY, Eileen
2021

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Background: Due to increased life expectancy, just as with the general population, people with intellectual disabilities are experiencing, and dying from, chronic and life-limiting conditions. This has led to an increase in the need for end-of-life care for people with intellectual disabilities. However, there is limited evidence as to what constitutes good end-of-life care from the perspectives of people with intellectual disabilities and their family members.


Methods: The study reported here aimed to nd out the care needs of people with intellectual disabilities at the end of life in Ireland. A grounded theory approach was employed to explore the perspectives of the participants. After obtaining appropriate ethical approval, 19 semi-structured individual interviews were carried out with 11 people with mild and moderate intellectual disabilities and eight family members to collect data which was subsequently analyzed through constant comparative analysis.


Results: The views of the participants suggested that providing personal care while vulnerable and dying, being with and communicating with the dying person, and meeting their spiritual needs, were considered as being essential at the end of life for people with intellectual disabilities.


Conclusion: The fndings from this study have shown that people with intellectual disabilities can engage with those around them and demonstrate how they would like to be cared for, and discuss what would be considered as being good care at the end of life.

Unheard children. Championing deaf children’s rights to family, community, education and independence in developing countries

DEAF CHILDREN WORLDWIDE
November 2020

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This report highlights the specific barriers facing deaf children and young people and demonstrates a number of smallscale approaches and initiatives that have succeeded in breaking down some of these barriers.

Topics are:

  • Language and communication. Early diagnosis and support (example from Bangladesh). Effective and affordable hearing technology. Communication choices. What is sign language? Tanzanian Sign Language – the need for more interpreters
  • Families. Early diagnosis and support. Upskilling parents and primary caregivers. Power to the parents (example from Uganda). Catalyst for change (example from India). 
  • Communities. Deaf role models (example from Bangladesh). Challenging the public and professionals. Educating the police force (example from India). Sharing knowledge across organisations
  • Education. Intensive communication. Extra help in the classroom (example from Kenya). Making secondary education accessible. Developing sign language skills. Inclusive further and higher education
  • Independence. Listening to deaf young people. Involving deaf young people in research. Support to make informed choices. Challenging perceptions in the workplace (example from Kenya)

 

 

Living in Chains - Shackling of people with psychosocial disabilities worldwide

HUMAN RIGHTS WATCH
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

Disability rights during the pandemic. A global report on findings of the COVID-19 Disability Rights Monitor

BRENNAN, Ciara Siobhan
October 2020

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This report presents the findings from a rapid global survey of persons with disabilities and other stakeholders which took place between April and August 2020. The organisations behind the study seek to “catalyse urgent action in the weeks and months to come,” as transmission rates of COVID-19 continue to rise in many countries and persons with disabilities are again subjected to restrictions which have already had severe consequences.

The report analyses over 2,100 responses to the survey from 134 countries around the world. The vast majority of responses were from individuals with disabilities and their family members. Within the questionnaire responses respondents provided more than 3,000 written testimonies documenting the experiences of persons with disabilities and their family members during the pandemic. The qualitative and quantitative data provide in-depth, comprehensive insights into the experiences of persons with disabilities and the consequences of government actions or inactions on the rights of persons with disabilities.

The report is organised around four themes which emerged during the process of analysing responses received to the survey. These themes are:

1. Inadequate measures to protect persons with disabilities in institutions

2. Significant and fatal breakdown of community supports

3. Disproportionate impact on underrepresented groups of persons with disabilities

4. Denial of access to healthcare

 

A webinar was held to mark the launch of the report

CitizEMPOWER: The importance of supporting inclusive citizen-generated data initiatives

LEONARD CHESHIRE
October 2020

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These recommendations provide guidance on how to ensure more inclusive and effective implementation of Citizen Generated Data (CGD) initiatives and partnerships that engage communities effectively, and especially young people, persons with disabilities and civil rights defenders.

 

The recommendations focus on:

Inclusive Partnerships and Effective Collaboration including a "Spotlight from Uganda: Using WG questions in the national census"

Data Access and Disaggregation including a "Spotlight from Madagascar: Youth generated data and accountability"

Resourcing and Funding including a "Spotlight from International Non Government Organisations: Using Washington Group Questions (WGQ) in humanitarian and development settings"

Pivoting to inclusion : Leveraging lessons from the COVID-19 crisis for learners with disabilities

McCLAIN-NHALPO,Charlotte Vuyiswa
KULBIR SINGH,Ruchi
MARTIN,Anna Hill
et al
August 2020

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As governments respond to the Coronavirus 2019 (COVID-19) pandemic, the global community must ensure that persons with disabilities are included. This will require disability inclusion to be considered in all interconnected sectors; education, health, social protection, and inclusion from the planning stage all the way through to delivery and recovery efforts that are inclusive of all and are sufficiently differentiated to meet the specific needs of children with disabilities. The issues paper focuses on the following objectives: (1) addressing education, social needs, barriers, and issues for learners with disabilities at a global, regional, and country-level during the COVID-19 crisis; and (2) recommending practices for education and social inclusion, and reasonable accommodations utilizing the twin track approach and principles of universal design for learning.

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

Development of self-help groups for caregivers of children with disabilities in Kilifi, Kenya: Process evaluation

GONA, Joseph K.
NEWTON, Charles
HARTLEY, Sally
BUNNING, Karen
July 2020

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Background: Caring for a child with disabilities in a resource-poor setting brings many challenges to the caregiver. We examined the development of self-help groups for caregivers in a rural part of Kenya.

 

Objectives: To conduct a process evaluation on the development of self-help groups during a 10-month set-up period, focusing on implementation and mechanisms associated with their functional status.

 

Methods: Using a realist evaluation design, we set up 20 self-help groups for 254 caregivers. An evaluation was conducted to investigate implementation and mechanisms of impact. Implementation focused on caregiver registration, community group support and monitoring visit compliance. Data were collected from group registers, records of meetings and field notes. Mechanisms of impact employed a framework of strengths–weaknesses–opportunities–threats to review the groups at the end of the 10-month set-up period.

 

Results: Recruitment resulted in registration of 254 participants to 18 groups – two groups disbanded early. Post-evaluation included 11 active and 7 inactive groups. Compliance with the monitoring visits was consistent across the active groups. All groups engaged in ‘merry-go-round’ activities. The active groups were characterised by strong leadership and at least one successful income generation project; the inactive had inconsistent leadership and had dishonest behaviour both within the group and/or externally in the community. Mediators associated with functional status included the following: available literacy and numeracy skills, regular meetings with consistent attendance by the members, viable income generating projects, geographical proximity of membership and strong leadership for managing threats.

 

Conclusion: Self-help groups have the potential to progress in resource-poor settings. However, critical to group progression are literacy and numeracy skills amongst the members, their geographical proximity, regular meetings of the group, viable income generating projects and strong leadership.

 

 

African Journal of Disability, Vol 9, 2020

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
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.

Learning Needs Assessment Report: Skills for impact - Rohingya Humanitarian crisis response, Bangladesh Local Humanitarian Aid Workers

AHSANUL ISLAM, Suman
et al
June 2020

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The Rohingya humanitarian crisis response in Cox’s Bazar (CXB) is a fairly new and complex experience for the humanitarian aid workers in Bangladesh. Aid workers are responsible for responding effectively in a very demanding context and acquire certain skills and competencies to adapt to the extreme workload. Since the current response in CXB began in 2017, local humanitarian aid workers (LHAWs) have gathered tremendous amount of learnings and experiences.

 

The objective of this LNA is to outline the knowledge, skills, capacity gaps and learning needs of LHAWs working in CXB. 

 

This LNA focuses on understanding LHAWs’ skills, knowledge and behaviour - both operational & technical. It analyses individuals' ability to contribute and implement response plans and respond effectively to the humanitarian crisis. Analysis focuses on understanding LHAWs’ capacity in addressing the needs of specific beneficiary groups such as children, women & girls, people with disability (PwD), elderly and people with chronic health issues. Quantitative and qualitative data was collected in November 2019.

 

Multifaceted interventions for supporting community participation among adults with disabilities

GROSS, Judith
MONROE-GULICK, Amalia
DAVIDSON-GIBBS, Debbie
NYE, Chad
June 2020

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This Campbell systematic review and meta-analysis examines the impact of multifaceted interventions on community participation outcomes for adults with disabilities, and aims to find effective components of the interventions. The review summarizes the findings from 15 reports of multifaceted interventions in five countries.

Included studies employ at least two interventions designed to address two or more participant characteristics (e.g., skill enhancement, behavior/attitude change) and/or environmental characteristics (e.g., participant interactions with people, places, or things) resulting in outcomes that provide direct access to the community (e.g., competitive employment, adult learning, housing) or are a dimension of community participation (e.g., self-determination, quality of life, social networking).

 

Campbell Systematic Reviews. 2020; 16:e1092.

https://doi. org/10.1002/cl2.1092.

The Social Network: How people with visual impairment use mobile phones in Kibera, Kenya

HOLLOWAY, Catherine
BARBARESCHI, Giulia
ARNOLD, Katherine
MAGOMERE, Grace
WETENDE, Wycliffe Ambeyi
NGARI, Gabriel
OLENJA, Joyce
May 2020

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Living in an informal settlement with a visual impairment can be very challenging resulting in social exclusion. Mobile phones have been shown to be hugely beneficial to people with sight loss in formal and high-income settings. However, little is known about whether these results hold true for people with visual impairment (VIPs) in informal settlements. Findings of a case study of mobile technology use by VIPs in Kibera, an informal settlement in Nairobi are presented. The study used contextual interviews, ethnographic observations and a co-design workshop to explore how VIPs use mobile phones in their daily lives, and how this use influences the social infrastructure of VIPs. Findings suggest that mobile technology supports and shapes the creation of social infrastructure. However, this is only made possible through the existing support networks of the VIPs, which are mediated through four types of interaction: direct, supported, dependent and restricted

 

Paper presented at CHI 2020, April 25–30, 2020, Honolulu, HI, USA

Environmental pre-requisites and social interchange: the participation experience of adolescents with autism spectrum disorder in Zurich

KRIEGER, Beate
PISKUR, Barbara
SCHULZE, Christina
BEURKENS, Anna
MOSER, Albine
May 2020

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Aim: Participation of adolescents with autism spectrum disorder hardly occurs in settings outside of home and school. Little is known about how their participation is influenced by environmental factors. This study explored how and why adolescents with autism spectrum disorder perceive aspects of their environment as facilitators or barriers to their participation outside of home and school.

 

Method: This explanatory case study explored the participation experiences of adolescents with autism spectrum disorder (15–21 years) from Zurich and surroundings with in-depth interviews and photo-elicitation, using photos made by the participants during activities outside of home and school. Data was analysed with a 7-step procedure.

 

Result: The presence of two main themes seemed necessary to facilitate participation outside of home and school: “environmental prerequisites to attend activities”, which consists of five subthemes, such as “the company of trusted persons” and “the provision of knowledge and information”, and “social interchange and engagement”, which consists of three subthemes and describes how actual involvement can be supported.

 

Conclusion: Our findings highlight the influence of trusted persons on adolescents with autism spectrum disorder, and the need to extend the support network for these adolescents to other individuals, services and society so that their participation in activities can be encouraged.

COVID-19 and the rights of persons with disabilities: Guidance

Office of the United Nations High Commissioner for Human Rights
April 2020

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This guidance aims to:

  • bring awareness of the pandemic’s impact on persons with disabilities and their rights;
  • draw attention to some promising practices already being undertaken around the world;
  • identify key actions for States and other stakeholders;
  • provide resources for further learning about ensuring rights based COVID-19 responses inclusive of persons with disabilities.

Topics are:

1. What is the impact of COVID-19 on the right to health of persons with disabilities

2. What is the impact of COVID-19 on persons with disabilities who are living in institutions

3. What is the impact of COVID-19 on the rights of persons with disabilities to live in the community

4. What is the impact of COVID-19 on work income and livelihood of persons with disabilities

5. What is the impact of COVID-19 on the right to education of persons with disabilities

6. What is the impact of COVID-19 on the right of persons with disabilities to protections from violence

7. What is the impact of COVID-19 on specific population groups in which persons with disabilities are overrepresented

People with disabilities in the face of COVID-19 in the Americas and the Caribbean

UNITED NATIONS OFFICE FOR DISASTER RISK REDUCTION (UNDRR)
April 2020

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The United Nations Office for Disaster Risk Reduction (UNDRR), Regional Office for the Americas and the Caribbean, ONG Inclusiva and the Latin America and the Caribbean Network for Disability Inclusive Disaster Risk Management (LAC DiDRR Network) organized a webinar on Thursday, 23 April that focused on people with disabilities in the face of COVID-19. Reflections surrounding the inclusion and active participation of people with disabilities within all disaster risk management and disaster risk reduction processes were among the issues analysed through this seminar. The results of a survey aimed at gaining a greater understanding of the experience of people with disabilities in the face of COVID-19 that was carried out by ONG Inclusiva were also presented.

COVID-19: How to include marginalized and vulnerable people in risk communication and community engagement

UN WOMEN
TRANSLATORS WITHOUT BORDERS
March 2020

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Recommendations for inclusion of marginalised and vulnerable groups in risk communications and community engangement are made. Groups considered are: children; people with disabilities; women and girls; pregnant women; persons living with HIV; gender based violence survivors; refugees and migrants; elderly; people in existing humanitarian emergencies; people with pre-existing medical conditions; sexual and gender minorities; ethnic minorities.

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