Resources search

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

BOTHA, Monique
DIBB, Bridget
FROST, David M
2020

Expand view

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.

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"

Disability inclusion in the United Nations system - Report of the Secretary General

SECRETARY-GENERAL OF THE UNITED NATIONS
October 2020

Expand view

When launching the Strategy in June 2019, the Secretary-General stated that the United Nations would lead by example and raise its standards and performance on disability inclusion across all pillars of its work, from Headquarters to the field. The present report outlines the first steps on the path to achieving transformative and lasting change for persons with disabilities across the United Nations system

 

The report is organized into seven sections. Following the introduction, an overview of the advances made in the United Nations on disability inclusion, including the adoption of the Strategy, is provided in section II; the first year of implementation of the Strategy at the entity and country levels is reported on in section III; coronavirus disease (COVID-19) response and recovery efforts are the focus of section IV; the overarching actions for implementation of the Strategy are considered in section V; challenges and opportunities are highlighted in section VI; and the conclusion and recommendations for consideration by the General Assembly are contained in section VII. The report provides an analysis of information from 57 United Nations entities1 that reported under the Strategy ’s entity accountability framework and seven United Nations country teams that completed the accountability scorecard on disability inclusion as part of a targeted roll-out.

The temporalities of supported decision-making by people with cognitive disability

WIESEL, Ilan
SMITH, Elizabeth
BIGBY, Christine
THEN, Shih-Ning
DOUGLAS, Jacinta
CARNEY, Terry
2020

Expand view

In many societies, people with cognitive disability have been pre- sumed to lack reasoned decision-making capacity. Consequently, substituted decision-making laws and practices have traditionally authorised some people such as parents, guardians or medical professionals, to make decisions on their behalf. Several countries are now moving towards an alternative supported decision-making paradigm whereby people with different cognitive abilities are supported to make decisions that reflect as much as possible their ‘will, preferences and rights’. In this paper we examine how geo- graphical thinking about temporalities might illuminate some of the legal, ethical and practical complexities of supported decision- making. The paper draws on qualitative data from interviews with people with intellectual disabilities or acquired brain injury, and those who support them in making decisions. We examine how temporal scales and boundaries shape the determination of decision-making capacity; how decision-makers’ ‘will and preferences’ are interpreted by supporters; and how the labour of support for decision-making is organised. We argue that further geographical engagement with supported decision-making can help significantly advance this important disability rights agenda.

Work conditions, support, and changing personal priorities are perceived important for return to work and for stay at work after stroke – a qualitative study

LINDGREN, Ingrid
Brogårdh, Christine
PESSAH-RASMUSSEN, Helene
JONASSON, Stina B
GARD, Gunvor
2020

Expand view

Purpose: To explore work related and personal facilitators and barriers for return to work (RTW) and stay at work after stroke.

 

Materials and methods: Twenty individuals post-stroke (median age 52 years; seven women) were inter- viewed in focus groups. Data were analyzed by using qualitative content analysis.

 

Results: An overall theme “Work conditions, support and changed personal priorities influenced RTW and stay at work after stroke” emerged and covered three categories: “Adjustments and flexibility at the work place facilitated RTW and a sustainable work situation”, “Psychosocial support and knowledge about stroke consequences facilitated work and reduced stress”, and “Changed view of work and other personal priorities”. Physical adjustments at the work place and flexibility in the work schedule were perceived facilitators. Support from family and colleagues were important, whereas lack of knowledge of stroke dis- abilities at the work place was perceived a barrier. Also changed personal priorities in relation to the work and the current life situation influenced RTW in various ways.

 

Conclusions: The individual’s opportunities to influence the work situation is a key factor for RTW and the ability to stay at work after stroke. Adjustments, flexibility, support, knowledge of stroke, and receptiv- ity to a changed view of work are important for a sustainable work situation.

The Liberia Evidence Lab: A new scalable model to deliver School Eye Health

EYElliance & Clinton Health Access Initiative (CHAI)
October 2020

Expand view

The case study highlights how school eye health programs can be successfully scaled in under-resourced and under-capacitated contexts, and ultimately supported through a sustainable financing mechanism. The case study shows how school eye health is an entry point and critical building block to comprehensive national eye health coverage. Through a pilot of the school eye health model, approximately 50,000 children received eye screenings across three counties in Liberia

The hidden impact of COVID-19 on children and families with disabilities.

ORSANDER, Martina
MENDOZA, Pamela
BURGESS, Melissa
ARLINI, Silvia Mila
October 2020

Expand view

This report is one in a series presenting findings from the Global COVID-19 Research Study on The hidden impact of COVID-19 on children. The results presented here focus on the impacts of COVID-19 on children and parents/caregivers with disabilities and their families, drawing on data from our representative sample of 17,565 parents/ caregivers and 8,069 children in our programme participants group. Topics covered include impacts of COVID-19 on household economy, health and nutrition, child education and learning, child rights, relationships between children and their parents/caregivers, psychosocial wellbeing, family separation and household violence.

The research was implemented in 46 countries in June and July 2020 and resulted in the largest and most comprehensive survey of children and families during the COVID-19 crisis to date, with 31,683 parents/ caregivers and 13,477 children aged 11–17 participating in the research. The research sampled three distinct population groups:

1. Save the Children programme participants;

2. Specific population groups of interest to Save the Children;

3. The general public.

A representative sample of Save the Children programme participants with telephone numbers or email addresses was obtained in 37 countries.

 

A GLOBAL RESEARCH SERIES

Leave no refugee behind - Inclusion and forced migration

LIGHT FOR THE WORLD
October 2020

Expand view

By WHO estimates, at least 12 million forcibly displaced people worldwide have a disability. Displaced persons with disabilities face violence, discrimination and barriers to services at a higher rate than other refugees and internally displaced persons (IDPs). Humanitarian actors have to protect the rights of persons with disabilities in contexts of forced migration. This must include accessible services as well as active participation of refugees and IDPs with disabilities in decision-making structures.

 

This Issue Brief covers the situation of forcibly displaced persons with disabilities, policy framework and legal requirements, and the work of Light of the World in this area (mainly in South Sudan). 

Crimes against humanity: Decades of violence and abuse in Mexican institutions for children and adults with disabilities

AHERN, Laurie
BRIZUELA, Lisbet
MILLAN, Ivonne
RODRIGUEZ, Priscila
ROSENTHAL, Eric
October 2020

Expand view

In this report, Disability Rights International (DRI) has thoroughly documented and detailed human rights violations against people with disabilities - a culmination of the 20 years of work that DRI has carried out in Mexico. DRI’s investigations cover a wide range of institutions including orphanages, psychiatric hospitals, institutions for people with disabilities and for homeless people, among others. The documentation of such a large number of institutions provides an overview of a scale of violations of the rights of persons with disabilities in Mexico  

Lymphatic filariasis in Uganda: Knowledge, attitudes and practices

DIXON, Ruth
October 2020

Expand view

This knowledge, attitudes and practices (KAP) study aimed to assess the KAP relating to lymphatic filariasis (LF) morbidity and morbidity management (MMDP) in Uganda in order to plan large-scale interventions.

The objectives for the study were to obtain baseline data on KAP regarding LF morbidity and its management; to establish current efforts in specific districts/regions to address morbidity and its management; and to assess the anticipated acceptance of interventions and identify potential barriers. The study used mixed methods including a quantitative household survey and qualitative key informant interviews and focus group discussions with people living with chronic conditions related to LF.

Disability design and innovation in computing research in low resource settings

MORGADO-RAMIREZ, Dafne Zuleima
BARBARESCHI, Giulia
DONOVON-HALL, Maggie Kate
SOBUH, Mohammad
ELLYAN, Nida'
TAKANDI, Brenda T
SSEKITOLEKO, Robert
OLENJA, Joyce
MAGOMERE, Grace Nyachomba
DAYMONDE, Sibylle
HONEYWILL, Jake
HARRIS, Ian
MBUGUA, Nancy
KENNEY, Laurence
HOLLOWAY, Catherine
October 2020

Expand view

80% of people with disabilities worldwide live in low resourced settings, rural areas, informal settlements and in multidimensional poverty. ICT4D leverages technological innovations to deliver programs for international development. But very few do so with a focus on and involving people with disabilities in low resource settings. Also, most studies largely focus on publishing the results of the research with a focus on the positive stories and not the learnings and recommendations regarding research processes. In short, researchers rarely examine what was challenging in the process of collaboration. We present reflections from the field across four studies. Our contributions are: (1) an overview of past work in computing with a focus on disability in low resource settings and (2) learnings and recommendations from four collaborative projects in Uganda, Jordan and Kenya over the last two years, that are relevant for future HCI studies in low resource settings with communities with disabilities. We do this through a lens of Disability Interaction and ICT4D.

 

ASSETS '20: Proceedings of the 22nd International ACM SIGACCESS Conference on Computers and Accessibility; 2020

https://doi.org/10.1145/3373625.3417301

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

Disability-inclusive health services toolkit : a resource for health facilities in the Western Pacific Region

WORLD HEALTH ORGANISATION (WHO) WESTERN PACIFIC
October 2020

Expand view

The United Nation Convention on the Rights of Persons with Disabilities upholds the rights of people with disabilities to access health services. The Disability- inclusive Health Services Toolkit: A Resource for Health Facilities in the Western Pacific Region supports the rights of people with disabilities to have the same access to health services as people without disabilities. The Toolkit provides practical guidance to managers and staff of health-care facilities and services, health policy-makers, and nongovernmental organizations on identifying and addressing barriers to health information and services. The Toolkit supports the achievement of universal health coverage (‎UHC)‎ by ensuring everyone can access health information and can benefit equally from health services.

Bridging the Divide: Exploring the use of digital and physical technology to aid mobility impaired people living in an informal setlement

BARBARESCHI, Giulia
OLDFREY, Ben
XIN, Long
MAGOMERE, Grace
WETENDI, Wycliffe Ambeyi
WANJIRA, Carol
OLENJA, Joyce
AUSTIN, Victoria
HOLLOWAY, Catherine
October 2020

Expand view

Traditional assistive products such as wheelchairs are essential to enable people to travel. Wheelchairs are considered a Human Right. However, they are difficult to access. On the other hand, mobile phones are becoming ubiquitous and are increasingly seen as an assistive technology. Should therefore a mobile phone be considered a Human Right? To help understand the role of the mobile phone in contrast of a more traditional assistive technology – the wheelchair, we conducted contextual interviews with eight mobility impaired people who live in Kibera, a large informal settlement in Nairobi. Our findings show mobile phones act as an accessibility bridge when physical accessibility becomes too challenging. We explore our findings from two perspective – human infrastructure and interdependence, contributing an understanding of the role supported interactions play in enabling both the wheelchair and the mobile phone to be used. This further demonstrates the critical nature of designing for context and understanding the social fabric that characterizes informal settlements. It is this social fabric which enables the technology to be useable.

 

ASSETS '20: Proceedings of the 22nd International ACM SIGACCESS Conference on Computers and Accessibility October 2020 Article No.: 50 Pages 1–13

https://doi.org/10.1145/3373625.3417021

Disability considerations in GBV programming during the COVID-19 pandemic

PEARCE, Emma
September 2020

Expand view

Information and practical guidance to support gender-based violence (GBV) practitioners to integrate attention to disability into GBV prevention, risk mitigation and response efforts during the COVID-19 pandemic are given. Initial guidance published in April 2020 updated in Sep 2020

 

GBV AoR HELPDESK Research Query 

Looking under the veil: Challenges faced by people with disabilities in cross-border entrepreneurship

MATSAURE, Keresencia
CHINDIMBA, Agness
ZIMANO, Felistas R
RUFFIN, Fayth
September 2020

Expand view

Background: Cross-border entrepreneurship is one source of livelihood that is transforming people’s lives, especially those with limited resources and educational qualifications and those in need of supplementary earnings to complement meagre formal earnings. However, despite strides made to make this avenue worthwhile, this Zimbabwean study shows that hidden hindrances still persist from procedural and structural barriers from road entry point management systems. To people with disabilities (PWDs), the impact of these hidden barriers is severe to the extent of obstructing their optimum progression into cross-border entrepreneurship.

 

Objectives: This article sought to interrogate some veiled challenges in border management systems affecting PWDs’ quest to venture into cross-border entrepreneurship. This angle has, to this end, been timidly addressed as most organisations and legislation have concentrated on making things work for the majority of the populace.

 

Method: Qualitative phenomenological method in which researchers’ lived experiences, review of literature, ideas and opinions is complemented by secondary survey data from a road entry point management system study in the Zimbabwean setting.

 

Results: Cross-border entrepreneurship has potential to transform people’s lives: 1) road and border management systems’ procedural and structural complications present hidden challenges impeding PWDs’ entry and optimum participation in cross border entrepreneurship, 2) people with disabilities are not automatically dependents; in fact, most have dependents looking up to the, 30 social construction of disability persists and must be curbed and 4) there is a need to institute a ‘stakeholders triad approach’.

 

Conclusion: The existing road entry points’ management systems are not informed by considerations from PWDs, hence the existence of hidden challenges. Cross-border entrepreneurship can open significant livelihood avenues to PWDs. A stakeholders ‘triad-approach’, proposed herein, can solve some of the policy discrepancies as it recommends utilising inputs from PWDs, research and policy-makers.

 

African Journal of Disability, Vol 9, 2020 

The impact of Covid-19 on people with disabilities – emerging findings

ROHWERDER, Brigitte
THOMPSON, Stephen
WICKENDEN, Mary
WAKOKO, Eric
AKTER, Fatema
NJUNGI, Josephine
CHUBA-UZO, Shadrach
September 2020

Expand view

Emerging evidence suggests that people with disabilities are amongst the groups most affected by the COVID-19 pandemic in all aspects of their lives. In order to provide more systematic evidence, narrative interviews were conducted with a diverse group of 40 jobseekers with disabilities in Bangladesh, Kenya, Nigeria, and Uganda who are involved with the Inclusion Works programme. The first round of interviews were conducted in July and August 2020. Initial key findings are given.

 

Management of Undergraduate Community-Based Rehabilitation Programmes in the Philippines: A Cross-Sectional Survey

TRINIDAD, Pocholo B
SHIBU, Litty M
CABALLERO, Napoleon R
RAJAB, Ebrahim
2020

Expand view

Purpose: The survey aimed to identify common strengths and weaknesses regarding the characteristics, management and implementation of Community-Based Rehabilitation (CBR) training in the undergraduate curriculum of Schools of Physical Therapy in the Philippines, and make recommendations for improvement.

 

Method: A survey was conducted with the academic heads of CBR departments in 10 Physical Therapy schools. The institutions were selected through cluster sampling according to regional location. Nine of these were private institutions. Data was collected through a 24-item self-assessment survey distributed to the heads of the participating colleges /departments.

 

Results: A number of strengths and weaknesses were identified. The strengths were:  all schools had a 1 to 2-month clinical CBR course integrated into their undergraduate curriculum; CBR courses were supported by a course syllabus, learning outcomes, student assessment and clinical training manual; 80% of institutions had implementing policies and guidelines governing management of the CBR programme(s); at least one physiotherapist was involved in the management of the CBR programme(s); and, CBR activities were delivered in coordination with key stakeholders management, with emphasis on delivery of physical therapy services, disability prevention, health education, participation of persons with disabilities and community awareness. The weaknesses were: no head/programme coordinator for 30% of CBR programmes; 40% did not have clinical coordinators as designated management positions in the CBR programme; only 50% of academic staff received formal CBR training, of which 80% was provided through CBR summits and professional interaction with other physical therapists; and, only 50% of schools adopted a multidisciplinary approach to service delivery which was focused on the Health domain of the CBR Matrix.

 

Conclusion:  The CBR component of the undergraduate physical therapy curriculum in the Philippines can be improved. A shift in the teaching to transdisciplinary care and inter-professional learning is recommended. Regular review of the CBR indicators should be done by the schools, including the key stakeholders.  Challenges for CBR implementation were recruitment of community volunteers as CBR workers, availability of indigenous resources and finances to support CBR activities, and family participation in the rehabilitation of a relative with a disability. Each school should determine whether current human resources and training are adequate. Schools must be encouraged to jointly identify common problems in CBR education and share solutions. 

Physical Activity, Enjoyment and Quality of Life among Institutionalised Older Adults in Malaysia: A Cross-Sectional Study

KUTTY, Nizar Abdul Majeed
JABBAR, Mohammed Abdul Razzaq
NG KYLIE
2020

Expand view

Purpose: In many nations across the world it has become a priority to stimulate increased physical activity (PA) among elderly persons.  This study aimed to find the association between physical activity patterns and enjoyment of physical activity and health-related quality of life (HRQoL) among institutionalised older adults in Malaysia.

 

Method: A sample of institutionalised older adults (n=134, mean age = 73.72; SD = 8.59) was recruited from the Klang valley in Malaysia. In cross-sectional analyses, their physical activity, enjoyment of physical activity and quality of life were screened using the Physical Activity Scale for the Elderly, the 8-item Physical Activity Enjoyment Scale and the EuroQuol-5 Dimensions-5 Levels questionnaires, respectively. High levels of physical activity were associated with enjoyment of physical activity and health-related quality of life.

 

Results: In total, 41% of the participants met the guidelines of the Physical Activity Scale for the Elderly and 53% enjoyed physical activity. A positive correlation was found between the level of physical activity and its enjoyment (rs = .355, p <.001). Significant correlations were recorded between the dimensions of health-related quality of life and the level of physical activity (p < 0.001), except for pain/discomfort and anxiety/depression.

 

Conclusion: Providing opportunities for institutionalised older adults to engage in a variety of activities might help them to identify the kind of physical activity they enjoy and facilitate a lifelong physical activity routine.
 

Psychosocial Functioning in Children with Dyslexia: Perspectives from Parents, Counsellors and Teachers

BAJAJ, Deepali
BHATIA, Sangeeta
2020

Expand view

Purpose: The study aimed to understand the issues and challenges encountered by various stakeholders (teachers, parents and counsellors) working with children with dyslexia in the inclusive school context.

 

Method: Using purposive and snowball sampling, 20 teachers, 20 counsellors and 20 parents (mothers) of children with specific learning disability (dyslexia) were selected from 8 inclusive schools in Delhi. A qualitative approach was adopted, with a semi-structured interview schedule to elicit responses. Qualitative thematic analysis was used as a framework for data analysis.

 

Results: Parents experienced negative feelings due to lack of awareness and acceptance of dyslexia. Counsellers felt parental ignorance led to delay in assessment and remediation. Parents and counsellors perceived lack of support from schools and lack of empathy among teachers. Teachers confessed they lacked training to deal with dyslexic learners, were unaware of policies and concessions for them, and were currently overburdened with their workload.

 

Conclusion: There is a need to hold psycho-educational workshops for parents in order to increase their awareness, and conduct training workshops (pre-service and in-service) for teachers to increase awareness and build empathy. Schools should provide in-house assistive services such as assessment and remediation, and redefine the goals of education to focus on the holistic skills of children.

Pages

E-bulletin