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Disability-related stigma and discrimination in sub-Saharan Africa and south Asia: a systematic literature review

VIRUNDRAKUMAR, Bhavisha
STEPHEN, Kathy
JOLLEY, Emma
SCHMIDT, Elena
May 2021

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This systematic literature review was undertaken to understand the extent, quality and findings of published and unpublished literature on interventions designed to tackle disability-related stigma and discrimination in sub-Saharan Africa and south Asia.

The primary focus of this review was to identify studies that describe the effectiveness of interventions to tackle disability-related stigma and discrimination. The secondary set of objectives focused on understanding the individual, interpersonal, organisational, community and public policy factors that are associated with stigma and discrimination.

“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

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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

First Philippine workplace inclusion forum

PFIP - Philippine Financial and Inter-Industry Pride
J P Morgan Chase and Co
Baker McKenzie
April 2021

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Breakout Sessions were:

Technology for Inclusion

Business Continuity, Resiliency and Inclusivity

Hiring for Diversity and Inclusion

The Language of Inclusion

Leave no girl with disabilities behind: Ensuring efforts to advance gender equality in education are disability-inclusive.

DIAMOND, Gloria
CASTRES, Pauline
April 2021

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This advocacy brief from the UN Girls’ Education Initiative (UNGEI) and Leonard Cheshire draws attention to the main barriers to education for girls with disabilities, in the context of major opportunities for advocacy and tangible change in 2021.  The recommendations outlined are targeted at world leaders, governments, ministries, UN agencies and NGOs. They offer a framework for rights-based action and principles towards gender-responsive and inclusive education, to ensure that no girls with disabilities are left behind. 

Malawian mothers’ experiences of raising children living with albinism: A qualitative descriptive study

LIKUMBO, Naomi
DE VILLIERS, Tania
KYRIACOS, Una
2021

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Background: Albinism in humans is characterised by a reduced amount of pigment (melanin) present in the skin, hair follicles and the eye; approximately 7000–10 000 Malawians of all ages are affected. Children with these features face extreme forms of human rights abuses, even death.

 

Objectives: This study aims to describe Malawian mothers’ experiences, perceptions and understanding of raising children with albinism (CWA).

 

Methods: The study was conducted in 2018 using a qualitative descriptive design, with purposive sampling and voluntary participation. Mothers, 18 years and older, who had given birth to a CWA and who attended the dermatology clinic of a local public hospital participated. An interview guide used during standardised, open-ended interviews was translated from English to Chichewa using forward and backward translation. Interviews were conducted in Chichewa, audio recorded, transcribed and forward and back translated from English to Chichewa. Thematic data analysis was employed.

 

Results: The mean age of participants (N = 10) was 33 years; two had albinism. Emerging themes confirmed the existence of myths and stereotypes regarding albinism but from the mothers’ perspectives. Mothers reported: (1) some experiences of emotional pain, initially, but also love and acceptance of their children, despite adverse reactions of others; (2) their experiences of stigmatisation of their children and themselves, and of intended harm to their children, and (3) their own lack of knowledge and understanding of albinism.

 

Conclusion: In our limited study, mothers’ self-reported experiences of raising CWA in Malawi highlight the need for educational programmes on albinism at national level, particularly for families with a CWA, health professionals and educators.

‘Satan is holding your tongue back’: Stuttering as moral failure

ISAACS, Dane H
2021

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Background: The last decade has seen researchers and speech–language pathologists employ and advocate for a disability studies approach in the study of the lived experiences of people who stutter and in the design of interventions and treatment approaches for such individuals. Joshua St. Pierre, one of the few theorists to explore stuttering as a disability, mentions as a key issue the liminal nature of people who stutter when describing their disabling experiences.

 

Objectives: This article aimed to build on the work of St. Pierre, exploring the liminal nature of people who stutter.

 

Method: Drawing on my personal experiences of stuttering as a coloured South African man, I illuminated the liminal nature of stuttering.

 

Results: This analytic autoethnography demonstrates how the interpretation of stuttering as the outcome of moral failure leads to the discrimination and oppression of people who stutter by able-bodied individuals as well as individuals who stutter.

 

Conclusion: As long as stuttering is interpreted as the outcome of moral failure, the stigma and oppression, as well as the disablism experience by people who stutter, will continue to be concealed and left unaddressed.

The effects of wheelchair mobility skills and exercise training on physical activity, fitness, skills and confidence in youth using a manual wheelchair

SOL, Marleen E
VERSCHUREN, Olaf
HOREMANS, Henricus
WESTERS, Paul
VISSER-MEILY, Johanna M A
DE GROOT, Janke F
Fit-for-the-Future Consortium
2021

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Purpose: To evaluate the effects of a combination of wheelchair mobility skills (WMS) training and exer- cise training on physical activity (PA), WMS, confidence in wheelchair mobility, and physical fitness. Methods: Youth using a manual wheelchair (n 1⁄4 60) participated in this practice-based intervention, with a waiting list period (16 weeks), exercise training (8 weeks), WMS training (8 weeks), and follow-up (16 weeks). Repeated measures included: PA (Activ8), WMS (Utrecht Pediatric Wheelchair Mobility Skills Test), confidence in wheelchair mobility (Wheelchair Mobility Confidence Scale), and physical fitness (cardio- respiratory fitness, (an)aerobic performance) and were analysed per outcome parameter using a multilevel model analyses. Differences between the waiting list and training period were determined with an unpaired sample t-test.

 

Results: Multilevel model analysis showed significant positive effects for PA (p1⁄40.01), WMS (p<0.001), confidence in wheelchair mobility (p<0.001), aerobic (p<0.001), and anaerobic performance (p<0.001). Unpaired sample t-tests underscored these effects for PA (p<0.01) and WMS (p<0.001). There were no effects on cardiorespiratory fitness. The order of training (exercise before WMS) had a significant effect on confidence in wheelchair mobility.

 

Conclusions: A combination of exercise and WMS training appears to have significant positive long-term effects on PA, WMS, confidence in wheelchair mobility, and (an)aerobic performance in youth using a manual wheelchair.

A National Survey of the Social and Emotional Differences Reported by Adults with Disability in Ireland Compared to the General Population

McCONKEY, Roy
2021

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The disadvantages experienced by adult persons with disabilities are well documented. However, limited evidence is available on the extent of differences in comparison with the non- disabled population. In this study, selected indicators of social status and mental wellbeing derived from past research, were used with national samples of adult persons in Ireland with a disability (n = 440) and without a disability (n = 880) recruited through household quota sampling. In addition, comparisons were drawn with equivalent data derived from a contemporaneous national census. Although many of the differences were statistically significant, the effect sizes were mostly medium to low. Moreover, when the inter-relationships among the various indicators was taken into account using Discriminant Analysis, persons with disabilities were less likely to be employed; they reported lower levels of social engagement and had poorer emotional wellbeing. They were also older, more likely to be single and have no children. The study illustrates the potential of using comparative data to monitor the impact of national actions taken to reduce the inequalities experienced by persons with disability as well as highlighting the arenas into which professional supports need to be focused.

Hard of Hearing Adults’ Interpersonal Interactions and Relationships in Daily Life

OLSSON, Sylvia
DAG, Munir
KULLBERG, Christian
2021

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Globally, there is limited research on how deaf and hard of hearing adults experience higher education and work. The purpose of the present study is to examine hard of hearing (HH) adults’ experiences of social interactions and social relationships in higher education, the workplace and leisure time. Data were obtained from semistructured interviews with 16 individuals (aged 24–31 years) from diverse cultural backgrounds (10 males and 6 females) with severe-to-profound hearing loss. Participants were selected based on previous expressed interest in participating in further studies after having been involved in an earlier study. The interviews were subjected to a qualitative thematic data analysis. According to the results, people with a hearing loss experience communication barrier in higher education, at work and in leisure time. These communication barriers lead to difficulties achieving social inclusion, and in some circumstances to social exclusion. Assistive technology (AT) and information and communication technologies (ICT) were important facilitators of moving from social exclusion towards social inclusion.

Disability considerations for COVID-19 vaccination: WHO and UNICEF policy brief, 19 April 2021

WORLD HEALTH ORGANISATION (WHO)
UNITED NATIONS CHILDREN'S FUND (UNICEF)
Eds
April 2021

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Persons with disabilities are disproportionately impacted by COVID-19, both directly because of infection, and indirectly because of restrictions to reduce the spread of the virus. Persons with disabilities are a diverse group, and the risks, barriers and impacts faced by them will vary in different contexts according to, among other factors, their age, gender identity, type of disability, ethnicity, sexual orientation, and migration status.

This document presents considerations and actions for the following stakeholders to ensure equity in access to vaccination against COVID‑19 for persons with disabilities:

− Persons with disabilities and their support networks

− Governments

− Health service providers delivering vaccinations

− Organizations of persons with disabilities

− Disability service providers

− Residential institutions and long-term care facilities

− Community

“When they see a wheelchair, They’ve not even seen me”—Factors shaping the experience of disability stigma and discrimination in Kenya

BARBARESCHI, Giulia
CAREW, Mark T
ADERONKE JOHNSON, Elizabeth
KOPI, Norah
HOLLOWAY, Catherine
April 2021

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Disability stigma in many low- and middle-income countries represents one of the most pervasive barriers preventing people with disabilities from accessing equal rights and opportunities, including the uptake of available assistive technology (AT). Previous studies have rarely examined how disability stigma may be shaped through factors endemic to social interactions, including how the use of assistive technology itself may precipitate or alleviate disability stigma. Through two strands of work, we address this gap. Via a series of focus groups with Kenyans without disabilities (Study 1) and secondary data analysis of consultations with Kenyans with disabilities and their allies (Study 2), we identify shared and divergent understandings of what shapes disability stigma and discrimination. Specifically, Kenyans with and without disabilities were cognizant of how religious/spiritual interpretations of disability, conceptions of impairments as “different” from the norm, and social stereotypes about (dis)ability shaped the experience of stigma and discrimination. Moreover, both groups highlighted assistive technology as an influential factor that served to identify or “mark” someone as having a disability. However, whereas participants without disabilities saw assistive technology purely as an enabler to overcome stigma, participants with disabilities also noted that, in some cases, use of assistive technologies would attract stigma from others.

 

Int. J. Environ. Res. Public Health 2021, 18(8), 4272.

https://doi.org/10.3390/ijerph18084272

Taking a Disability-Inclusive Approach to Pandemic Responses

WICKENDEN, Mary
THOMPSON, Stephen
ROHWERDER, Brigitte
SHAW, Jackie
2021

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The Covid-19 pandemic has affected communities globally, yet the impact has not been equal. People with disabilities were already often living with severe disadvantage and marginalisation and, as predicted by many disability-focused agencies, Covid-19 has exacerbated these inequalities. Emerging evidence from Inclusive Futures, a UK Foreign, Commonwealth & Development Office (FCDO)-funded programme, highlights the catastrophic emotional and material impacts on people with disabilities in Nepal and Bangladesh. To respond to and plan for future crises, decision makers should consult inclusively with both organisations of people with disabilities (OPDs) and people with disabilities themselves.
 

Engaging girls and women with disabilities in the global South: Beyond cultural and geopolitical generalizations

NGUYEN, Xuan Thuy
STIENSTRA, Deborah
2021

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This article invites readers to engage with girls and women with disabilities in the global South. It challenges the epistemological domination of Western disability studies in Southern bodies and contexts, and provides one specific way to read the intersection between disability, gender, and ethnicity in the context of Vietnam. Drawing on the politics of engagement developed within the Transforming Disability Knowledge, Research, and Activism project, we argue for recognizing the lingering impacts of colonialism and imperialism in producing disability and impairment in the South, while suggesting new ways of engaging with disabled girls and women through the use of inclusive, decolonial, and participatory methods.

‘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.

Prevalence, types, and combinations of multiple problems among recipients of work disability benefits

BRONGERS, Kor A
HOEKSTRA, Tialda
ROELOFS, Pepijn D D M
BROUWER, Sandra
2021

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Purpose: For persons on disability benefits who are facing multiple problems, active labour market poli- cies seem less successful. Besides health problems, these people perceive personal, social, and environ- mental problems. Since very little is known about these “non-medical” problems our aim was to explore the prevalence of clients experiencing multiple problems, the types and number of perceived problems, combinations of perceived problems, and associated characteristics in a group of work disability benefit recipients.

 

Methods: We performed a cross-sectional study, using self-reported data on perceived problems and socio-demographics, and register data from the Dutch Social Security Institute on diagnosed diseases and employment status. A convenient group of labour experts recruited eligible clients on work disability benefit.

 

Results: Of the 207 persons on work disability benefit, 87% perceived having multiple problems. Most reported problems were related to physical (76%) or mental (76%) health. Health problems most fre- quently occurred together with a mismatch in education, financial problems, or care for family members. Clients with lower education experienced significantly more problems than clients with an intermediate or high educational level.

 

Conclusions: Clients with multiple problems face severe and intertwined problems in different domains of life, and need tailored multi-actor work disability management.

Exploring participation in family and recreational activities among children with cerebral palsy during early childhood: how does it relate to motor function and parental empowerment?

KALLESON, Runa
JAHNSEN, Reidun
ØSTENSJØ, Sigrid
2021

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Purpose: To explore participation in real-life activities during early childhood, compare children’s partici- pation based on motor function and investigate relationships between participation and parental empowerment.


Methods: Data derived from the Cerebral Palsy Follow-up Program (CPOP) in Norway and the research registry Habilitation Trajectories, Interventions, and Services for Young Children with CP (CPHAB). Fifty-six children (12–56 months, GMFCS levels I–IV, MACS levels I–V) and their families were included. Frequency and enjoyment of participation were assessed by the Child Engagement in Daily Life Questionnaire and parental empowerment in family and service situations by the Family Empowerment Scale at least twice during the preschool years. Differences between groups based on motor function were explored by the Kruskal–Wallis tests. A linear mixed model was conducted to explore relationships between child partici- pation and parental empowerment.

 

Results: Similarities and differences in participation between children at different motor function levels varied between the activities explored. Fluctuations in frequency and stable enjoyment scores over time were most common. A statistically significant relationship was revealed between child participation and parental empowerment in family situations, but not in service situations.

 

Conclusions: Child participation appears as context-dependent and complexly influenced by both motor function and parental empowerment. This supports a focus on transactional processes when exploring and promoting child participation.

Do personal assistance activities promote participation in society for persons with disabilities in Sweden? A five-year longitudinal study

VON GRANITZ, Heléne
SONNANDER, Karin
REINE, Ieva
WINBLAD, Ulrika
2021

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Purpose: To explore whether the personal assistance (PA) activities provided by the Swedish Act concern- ing Support and Service for Persons with Certain Functional Impairment in 2010 and 2015 promote par- ticipation in society according to Article 19 of the United Nations’ Convention on the Rights of Persons with Disabilities (UNCRPD).

 

Methods: Register data and data from two questionnaires were used (N1⁄42565). Descriptive statistics and chi-square (McNemar’s test) were used to describe the basic features of the data. Mixed binominal logistic regression was used to examine correlation between gender and hours of PA between 2010 and 2015.

 

Results: Despite an increase in the number of PA hours, more care activities and a reduction of most PA activities representing an active life were found. The result was especially evident for women, older peo- ple, and for a particular person category.


Conclusions: The results offer evidence of a shift to a medical model and indicate a risk of social exclu- sion due to fewer activities representing an active life. An increase on average of 16h of PA over the period studied does not guarantee access to an active life and may indicate a marginal utility. The noted decline of PA for participation in society enhances the importance of monitoring content aspects to fulfil Article 19 of the UNCRPD.

Background: Sexual and reproductive health (SRH) of young people including those with disabilities is a major public health concern globally. However, available evidence on their use of sexual and reproductive health services (SRHS) is inconsistent.Object

KUMI-KYEREME, Akwasi
2021

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Background:Sexual and reproductive health (SRH) of young people including those with disabilities is a major public health concern globally. However, available evidence on their use of sexual and reproductive health services (SRHS) is inconsistent.


Objective:This study investigated utilisation of SRHS amongst the in-school young people with disabilities (YPWDs) in Ghana using the healthcare utilisation model.


Methods: Guided by the cross-sectional study design, a questionnaire was used to obtain data from 2114 blind and deaf pupils or students in the age group 10-24 years, sampled from 15 purposively selected special schools for the deaf and the blind in Ghana.


Results: About seven out of every 10 respondents had ever utilised SRHS. The proportion was higher amongst the males (67.8%) compared with the females (62.8%). Young persons with disabilities in the coastal (OR = 0.03, 95% CI = 0.01–0.22) and middle (OR = 0.06, 95% CI = 0.01–0.44) zones were less likely to have ever utilised SRHS compared with those in the northern ecological zone. The blind pupils or students were more likely to have ever utilised SRHS than the deaf (OR = 1.45, 95% CI = 1.26–3.11).


Conclusions: Generally, SRHS utilisation amongst the in-school YPWDs in Ghana is high but significantly associated with some predisposing, need and enabling or disabling factors. This underscores the need for policymakers to consider in-school YPWDs as a heterogeneous group in the design and implementation of SRHS programmes. The Ghana Education Service in collaboration with the Ghana Health Service should adopt appropriate pragmatic measures and targeted interventions in the special schools to address the SRH needs of the pupils or students.

Combatting the costs of exclusion for children with disabilities and their families

MONT, Daniel
UNICEF
March 2021

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Compared with other children, children with disabilities are less likely to receive an education, less likely to be employed as adults, more likely to be victims of violence, less likely to start their own families and participate in community events, and more likely to live in poverty. 

The exclusion of children with disabilities affects not only them, but imposes costs on the whole community. If these children lack the opportunity to be productive, society loses out on what they could have produced.  The barriers faced by people with disabilities can also create more responsibilities for their family members, which can limit their opportunities to work or get an education.

Moreover, the impact of exclusion extends beyond the economic cost. If people with disabilities are absent from public discourse, the community cannot benefit from their ideas. If they are excluded from political participation, the government cannot truly represent the interests of all citizens. 

A growing body of research suggests that the costs of exclusion are high. Fortunately, evidence also demonstrates that there are effective ways to ameliorate these costs. A strong case can be made for the social and economic benefits of inclusion. This paper is an effort to begin making that case.

 

Persons with disabilities and their representative organisations in Iraq

March 2021

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Iraq has one of the largest populations of persons with disabilities in the world. Despite this, there has been little consultation among persons with disabilities and their representative groups by government and humanitarian and development agencies. Persons with disabilities and their representative organisations in Iraq: Barriers, challenges and priorities aims to improve the understanding of the barriers experienced by persons with disabilities, including the key challenges and priorities of their rep­resentative organizations, in order to inform humanitarian and development programming. The report is based on interviews conducted with 81 representatives of 53 Organiza­tions of persons with disabilities across 18 governorates in Iraq.

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