Resources search

Disability justice and stigma – Pathways to change

PUNEET, Singhal
September 2023

Expand view

Presented at the Disability Innovation Summit: Inclusive Interactions conference organised by the GDI hub on 13 Sept 2023.

 

A short talk highlighting disability intersectionality, from personal experience of multiple unseen disabilities, poverty, marginalisation and abuse.

The work of the Global Network of Young Persons with Disabilities is highlighted.

Mainstreaming Disability Inclusive Disaster Risk Reduction (DIDDR) in Community Based Inclusive Development: A Situation Analysis

GRECH, Shaun
July 2023

Expand view

Two publications, developed with the University of Cape Town, aim to provide development practitioners and organisations with the tools they need to ensure that a disability inclusive approach to disaster risk reduction can be integrated into all community development programmes.

A situation analysis reviews the situation and outlines the extent to which DIDRR is infused within CBID. The study points out the barriers in place and highlights the opportunities available to facilitate the process of mainstreaming DIDRR, which means building DIDRR into the core of community development programmes as opposed to these disciplines operating in separate spheres. This mainstreaming will not only ensure greater preparedness for disasters, but also protection of the gains made in community development programmes.

A major outcome of this study is a new set of guidelines for practice on the mainstreaming of DIDRR in community development: Mainstreaming DIDRR in CBID – Guidance for Planning and Practice

Mainstreaming Disability Inclusive Disaster Risk Reduction (DIDRR) in Community Development: Guidance for Planning and Practice.

GRECH, Shaun
July 2023

Expand view

Two new publications, developed with the University of Cape Town, aim to provide development practitioners and organisations with the tools they need to ensure that a disability inclusive approach to disaster risk reduction can be integrated into all community development programmes. A situation analysis reviews the situation and outlines the extent to which DIDRR is infused within CBID. 

A major outcome of this study is a new set of guidelines for practice on the mainstreaming of DIDRR in community development: Mainstreaming DIDRR in CBID – Guidance for Planning and Practice. In twenty action points, the guide provides pointers for practitioners on how community-based initiatives can become more informed about disasters and start mainstreaming DIDRR. It aims to stimulate reflection at multiple stages, from project planning to implementation and monitoring, to ensure DIDRR becomes an integral part of community-based programmes, in an effective, sensitive and responsive way.

The guidelines are available to download either as one document or as 20 separate action points.

 

 

 

Inclusive Design and Accessibility of the Built Environment in Solo, Indonesia

PATRICK, Michaela
McKINNON, Iain
PUTRI PRASTIKA, Kirana
ASTERINA, Nina
FUAD, Jamil
March 2022

Expand view

This case study builds a picture of the current state of inclusion and accessibility in the built environment and infrastructure in Solo, Indonesia, through engaging local stakeholders and communities and exploring the understanding of and potential for inclusive design to address some of the current barriers to inclusion.

Surakarta (known as Solo) is a city in Central Java, Indonesia, with a population of 557,606 people. The city has a strong history of inclusion, recognised as a great place for persons with disabilities in Indonesia to live. Solo city is a leader for inclusion in Indonesia, demonstrated through city regulations on disability inclusion that pre-date the ratification of the UNCRPD. There is great progress in implementing inclusive environments in Solo with numerous accessible infrastructures, but the city would benefit from a more holistic approach, support by a robust inclusive design strategy that integrates inclusion, sustainable and resilience to ensure long-term progress. One of the aspects that makes Solo unique is its strong community relationships, community-led approaches and leadership from the community is active and valued. This is also supported within urban governance, facilitating opportunities from grassroots leadership and inclusive participation for persons with disabilities.

The research identified that to create more inclusive environments, the physical infrastructure, planning and design is crucial, but equally important are the processes of inclusion and participation. Creating robust mechanisms of community participation and leadership is fundamental to ensure long term sustainable and continued progress to being a more inclusive city.

Across Indonesia, action towards inclusive cities is supported through the work of the Inclusive Mayor’s Network in Indonesia demonstrating country-wide leadership. The findings of this case study will serve Solo as a city but also have relevance for other cities across Indonesia and support the implementation of best practices found in Solo. 

This is the third of six case studies of the Inclusive Infrastructure programme analysing the state of accessibility and inclusive design in low-resource contexts around the world. 

Disability interactions creating inclusive innovations

HOLLOWAY, Catherine
BARBARESCHI, Giulia
January 2022

Expand view

Disability interactions (DIX) is a new approach to combining cross-disciplinary methods and theories from Human Computer Interaction (HCI), disability studies, assistive technology, and social development to co-create new technologies, experiences, and ways of working with disabled people. DIX focuses on the interactions people have with their technologies and the interactions which result because of technology use. A central theme of the approach is to tackle complex issues where disability problems are part of a system that does not have a simple solution. Therefore, DIX pushes researchers and practitioners to take a challenge-based approach, which enables both applied and basic research to happen alongside one another. DIX complements other frameworks and approaches that have been developed within HCI research and beyond. Traditional accessibility approaches are likely to focus on specific aspects of technology design and use without considering how features of large-scale assistive technology systems might influence the experiences of people with disabilities. DIX aims to embrace complexity from the start, to better translate the work of accessibility and assistive technology research into the real world. DIX also has a stronger focus on user-centered and participatory approaches across the whole value chain of technology, ensuring we design with the full system of technology in mind (from conceptualization and development to large-scale distribution and access). DIX also helps to acknowledge that solutions and approaches are often non-binary and that technologies and interactions that deliver value to disabled people in one situation can become a hindrance in a different context. Therefore, it offers a more nuanced guide to designing within the disability space, which expands the more traditional problem-solving approaches to designing for accessibility. This book explores why such a novel approach is needed and gives case studies of applications highlighting how different areas of focus—from education to health to work to global development—can benefit from applying a DIX perspective. We conclude with some lessons learned and a look ahead to the next 60 years of DIX.

 

https://doi.org/10.1007/978-3-031-03759-7

 

Inclusive education training guide

LEWIS, Ingrid
July 2021

Expand view

This package is designed to assist with the training of staff within CBM and its partners. It has been prepared with country and regional advisory staff in mind but will have value for project/ programme management and other staff too. It has been designed for use with small groups of participants (e.g., maximum 10-15).

This training package focuses on inclusive education. It interprets inclusive education in a broad sense as a dual process of bringing about education system change, at all levels of education, to the benefit of all learners; and supporting the needs of individual learners, especially those with disabilities. It is not a training about specific impairments, nor will it show participants how to identify, teach and support learners with specific impairments. Instead the package helps participants to understand better the overarching challenges being faced and the systematic programme and advocacy approaches that CBM, its partners and other similar organisations need to engage with.

 

This training package consists of the following booklets:

A Inclusive education and CBM

B Inclusive education and the community

C Participation and achievement for all learners

D Education system change

“Give us the chance to be part of you, We want our voices to be heard”: Assistive Technology as a mediator of participation in (formal and informal) citizenship activities for persons with disabilities who are slum dwellers in Freetown, Sierra Leone

AUSTIN, Vicki
HOLLOWAY, Cathy
OSSUL VERMEHREN, Ignacia
DUMBAYA, ABS
BARBARESCHI, Giulia
WALKER, Julian
May 2021

Expand view

The importance of assistive technology (AT) is gaining recognition, with the World Health Organisation (WHO) set to publish a Global Report in 2022. Yet little is understood about access for the poorest, or the potential of AT to enable this group to participate in the activities of citizenship; both formal and informal. The aim of this qualitative study was to explore AT as mediator of participation in citizenship for persons with disabilities who live in two informal settlements in Freetown, Sierra Leone (SL). The paper presents evidence from 16 participant and 5 stakeholder interviews; 5 focus groups and 4 events; combining this with the findings of a house-to-house AT survey; and two national studies—a country capacity assessment and an informal markets deep-dive. Despite citizenship activities being valued, a lack of AT was consistently reported and hindered participation. Stigma was also found to be a major barrier. AT access for the poorest must be addressed if citizenship participation for persons with disabilities is a genuine global intention and disability justice is to become a reality.

 

International Journal of Environmental Research and Public Health, Int. J. Environ. Res. Public Health 2021, 18(11)

https://doi.org/10.3390/ijerph18115547

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

WANG, Yuchen
2021

Expand view

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 Role of the Family Network When Raising a Child with a Disability in Low- and Middle-Income Countries

BIZZEGO, Andrea
LIM, Mengyu
DIMITRIOU, Dagmara
ESPOSITO, Gianluca
2021

Expand view

Family plays a role in supporting child development, by facilitating caregiving and other parental practices. Low- and middle-income families typically have a complex structure with many relatives living together in the same household. The role of family and family complexity in the caregiving of children with disabilities is still unknown. In this study, we use data from N = 22,405 children with severe (N = 876) and mild or no disability (N = 21,529) from a large dataset collected in the 2005–2007 Multiple Indicator Cluster Survey. In particular, we adopt PageRank, a well-known algorithm used by search engines, to quantify the importance of each child in the family network. We then analyze the level of caregiving the child received in light of the child’s importance and developmental status, using a generalized linear model. Results show a main effect of child’s importance and of the interaction of child’s importance and developmental status. Post hoc analysis reveals that higher child importance is associated with a better caregiving outcome only for children with mild or no disability.

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

Expand view

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

Expand view

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

Expand view

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)

 

 

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

BRENNAN, Ciara Siobhan
October 2020

Expand view

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

Living in Chains - Shackling of people with psychosocial disabilities worldwide

HUMAN RIGHTS WATCH
October 2020

Expand view

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

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

LEONARD CHESHIRE
October 2020

Expand view

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"

Developing inclusive and resilient systems: COVID-19 and assistive technology

SMITH, Emma M
MacLACHLAN, Malcolm
EBUENYI, Ikenna D
HOLLOWAY, Catherine
AUSTIN, Victoria
October 2020

Expand view

Assistive technology is a critical component of maintaining health, wellbeing, and the realization of rights for persons with disabilities. Assistive technologies, and their associated services, are also paramount to ensuring individuals with functional limitations have access to important health and social service information, particularly during a pandemic where they may be at higher risk than the general population. Social isolation and physical distancing have further marginalized many within this population. We have an opportunity to learn from the COVID-19 response to develop more inclusive and resilient systems that will serve people with disabilities more effectively in the future. We present a starting point for discussion, based on our experiences working to promote access to assistive technologies through inclusive and sustainable systems and policies.

 

Disability and Society, vol. 36, 2021

https://doi.org/10.1080/09687599.2020.1829558

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

Expand view

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

Expand view

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

Expand view

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

Pages

E-bulletin