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“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

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.

COVID-19 from the margins: Gendered-Disability experiences in Sri Lanka

KANDASAMY, Niro
PERERA, Binendri
SOLDATIC, Karen
2021

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Recent research in the global South has highlighted that persons with disabilities are a vulnerable category of persons during the COVID19 outbreak. This paper provides some preliminary insights into Sri Lankan government responses to the outbreak, which, as we will be highlighting, take an ableist approach that further neglect the interests of persons with disabilities while entrenching disability dependencies on informal structures of familial and household support and in turn, increasing their marginality and economic insecurity. The COVID-19 outbreak hit Sri Lanka during a period of political turmoil – national Parliament had been dissolved on 3 March 2020 with elections initially called for 25 April 2020, six months prior to the official end of the Government’s elected term. Drawing upon rapid interview narratives, we present the lived experiences of two women with disabilities and the unique challenges they are facing during the COVID-19 pandemic. As we write this paper in September 2020, we acknowledge that the longer-term impacts of COVID-19 will not become immediately visible, particularly for disabled people from ethno-religious minority groups, including those residing within the former conflict zones.

Being a girl & disabled in West Africa : the educational situation in question Mali, Niger, Burkina Faso

Humanity & Inclusion
October 2020

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Questions de recherche

1 / Dans quelle mesure le handicap — en interrelation avec le genre — influence-t-il les parcours de scolarisation des filles handicapées?

2 / Quelles spécificités liées aux types et au degré de handicap (physique, visuel, auditif, intellectuel) peuvent être observées?

3 / Quelles sont les spécificités liées à l’âge des filles handicapées?

4 / A quels enjeux, notamment en matière de protection de l’enfance, les jeunes filles handicapées sont-elle exposées ?

5 / Quelles spécificités contextuelles émergent dans les trois pays, objet de l’étude et dans les différents terrains d’étude?

6 / Quel rôle joue la religion et les croyances populaires dans l’accentuation des discriminations à l’égard des filles handicapées?

7 / Quels éléments facilitateurs (familiaux/communautaires/institutionnels/politiques/etc.) pour l’éducation des filles handicapées pourraient être identifiés dans les différentes zones d’étude?

Être une fille et handicapée en Afrique de l’Ouest : La situation éducative en question : etude pays - Mali

Humanity & Inclusion
October 2020

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Questions de recherche

1 / Dans quelle mesure le handicap — en interrelation avec le genre — influence-t-il les parcours de scolarisation des filles handicapées?

2 / Quelles spécificités liées aux types et au degré de handicap (physique, visuel, auditif, intellectuel) peuvent être observées?

3 / Quelles sont les spécificités liées à l’âge des filles handicapées?

4 / A quels enjeux, notamment en matière de protection de l’enfance, les jeunes filles handicapées sont-elle exposées ?

5 / Quelles spécificités contextuelles émergent dans les trois pays, objet de l’étude et dans les différents terrains d’étude?

6 / Quel rôle joue la religion et les croyances populaires dans l’accentuation des discriminations à l’égard des filles handicapées?

7 / Quels éléments facilitateurs (familiaux/communautaires/institutionnels/politiques/etc.) pour l’éducation des filles handicapées pourraient être identifiés dans les différentes zones d’étude?

Être une fille et handicapée en Afrique de l’Ouest : La situation éducative en question : etude pays - Niger

Humanity & Inclusion
2020

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Questions de recherche

1 / Dans quelle mesure le handicap — en interrelation avec le genre — influence-t-il les parcours de scolarisation des filles handicapées?

2 / Quelles spécificités liées aux types et au degré de handicap (physique, visuel, auditif, intellectuel) peuvent être observées?

3 / Quelles sont les spécificités liées à l’âge des filles handicapées?

4 / A quels enjeux, notamment en matière de protection de l’enfance, les jeunes filles handicapées sont-elle exposées ?

5 / Quelles spécificités contextuelles émergent dans les trois pays, objet de l’étude et dans les différents terrains d’étude?

6 / Quel rôle joue la religion et les croyances populaires dans l’accentuation des discriminations à l’égard des filles handicapées?

7 / Quels éléments facilitateurs (familiaux/communautaires/institutionnels/politiques/etc.) pour l’éducation des filles handicapées pourraient être identifiés dans les différentes zones d’étude?

Être une fille et handicapée en Afrique de l’Ouest : La situation éducative en question : etude pays - Burkina Faso

Humanity & Inclusion
2020

Expand view

Questions de recherche

1 / Dans quelle mesure le handicap — en interrelation avec le genre — influence-t-il les parcours de scolarisation des filles handicapées?

2 / Quelles spécificités liées aux types et au degré de handicap (physique, visuel, auditif, intellectuel) peuvent être observées?

3 / Quelles sont les spécificités liées à l’âge des filles handicapées?

4 / A quels enjeux, notamment en matière de protection de l’enfance, les jeunes filles handicapées sont-elle exposées ?

5 / Quelles spécificités contextuelles émergent dans les trois pays, objet de l’étude et dans les différents terrains d’étude?

6 / Quel rôle joue la religion et les croyances populaires dans l’accentuation des discriminations à l’égard des filles handicapées?

7 / Quels éléments facilitateurs (familiaux/communautaires/institutionnels/politiques/etc.) pour l’éducation des filles handicapées pourraient être identifiés dans les différentes zones d’étude?

The Convention on the Rights of Persons with Disabilities and the Islamic Tradition: The question of legal capacity in focus

GHALY, Mohammed
2019

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Legal capacity of persons with mental disabilities was a con- tentious issue during the process of drafting the Convention on the Rights of Persons with Disabilities. The Arab Group, consisting of Muslim-majority countries, in the United Nations expressed reservations about the formulation of the Article related to this issue. However, their reservations were dis- missed because they arguably had to do with language-specificity. The author revisits these deliberations and argues that the reservations of the Arab countries have to do with reli- gious aspects rooted in the Islamic tradition. By ignoring these religious aspects, the Disability Convention missed a rich source of wisdom provided by a world religion like Islam. On the other hand, the innovative insights provided by the Disability Convention can be of value to improve contemporary discussions on legal capacity within the Islamic tradition. Unlike the previous studies, which either focused on the approach of the Disability Convention or that of the Islamic tradition, this study examines both approaches and highlights the points of agree- ment and disagreement and finally proposes suggestions for narrowing the existing gap between these two approaches.

‘Power-Hurt’: The Pains of Kindness Among Disabled Karen Refugees in Thailand

COLE, Tomas
2019

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In this paper I show how, for many Karen living as refugees in ‘temporary-shelter-areas’ in Thailand, acts of care and kindness often slipped into something painful and controlling. Drawing on fieldwork among Karen refugees disabled by landmines I show how asking for and receiving help was almost always accompanied by the visceral sensation of ana, literally, ‘power hurt’. On the one hand, ana was the force driving the circulation of care and kindness, provoking people to help others. On the other hand this circulation also carried with it the constant potential to compromise not only the recipient’s but also the donor’s ‘power’, which was understood as their capacity to have an effect on the world. In this manner ana may offer us with a way to grasp the ethical-affective basis of a social arrangement that slips smoothly between lateral solidarities and vertical hierarchical relations allowing egalitarianism and hierarchy to co-exist.

Pastoral ministry and persons with disabilities: The case of the Apostolic Faith Mission in Zimbabwe

SANDE, Nomatter
2019

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Background: The Persons with Disability (PWD) are the minority group dehumanized in the church. The subject of disability is complicated because of the impact of the Judeo-Christian teachings. The Apostolic Faith Mission (AFM) in Zimbabwe is a leading Pentecostal church with a pastoral ministry theology which emphasises divine healing, miracles, signs and wonders. Thus, the space of PWD and how the PWD either connects or benefits from this Pentecostal heritage is a critical gap in this study.

 

Objectives: The objective of this study was to explore the construction of disability through the practices and processes of the pastoral ministry in the AFM.

 

Method: This study followed qualitative research and used the social model of disability as theoretical framework. The data were collected from 26 participants who are PWD and pastors using in-depth interviews, focus groups and participant observations.

 

Results: The results showed the AFM pastoral practices created invisible barriers that militate against PWD. Thus, the pastoral ‘divine solutions’ and ‘triumphalist messages and teachings’ are ‘prescriptive’ and ineffective in reducing ‘the plight of PWD in Zimbabwe’.

 

Conclusion: The study concludes that the pastoral ministry should be ‘one efficient vehicle’ with which the church can care for and ‘transform persons with disabilities’. Pastors should break the glass ceiling by expecting pastors to minister better and more effectively creating a safe space for persons with disabilities. A caring community should be the nature of both the AFM and the pastoral ministry responsible for meeting the needs of the persons with disabilities.

 

African Journal of Disability, Vol 8, 2019

Ubuntu considered in light of exclusion of people with disabilities

NGUBANE-MOKIWA, Sindile A.
2018

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Background: This article emanates from a study funded by the KwaZulu-Natal chapter of South Africa’s National Research Foundation on the ‘Archaeology of Ubuntu’. It explores the notion of ubuntu and disability in a group of Zulu people from four communities within KwaZulu-Natal. The study is based on the notion that ubuntu is humaneness. Being human is linked to notions of care, respect and compassion.

 

Objectives: The article explores the treatment of people with disabilities from the elders’ perspectives in this community.

 

Method: This article is based on qualitative data resulting from structured interviews conducted in the KwaZulu-Natal Province between February and March 2015.

 

Results: The results reveal that society considered the birth of a disabled child as a curse from God and punishment from the ancestors. The results also indicate that people with disabilities were excluded from community activities; marrying a disabled person was unthinkable because they were stigmatised and dehumanised. The work of Hannah Arendt is used to interrogate people’s perceptions of others with disabilities in their communities.

 

Conclusion: The article posits that treatment of people with disabilities is not cast in stone but can be renegotiated and restructured through community engagement to represent genuine inclusion.

Disability stigma in developing countries

ROHWERDER, Brigitte
May 2018

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This K4D helpdesk report, commissioned by UK DFID, answers the question "What are the core drivers behind stereotypes, prejudice (including pity/shame etc), and harmful practices against persons with disabilities in developing countries and what promising strategies/pathways for addressing these drivers have been identified?" using desk research.

 

Across the world stereotypes, prejudice, and stigma contribute to the discrimination and exclusion experienced by people with disabilities and their families in all aspects of their lives. This rapid review looks at available evidence on the drivers of disability stigma in developing countries, and promising strategies for addressing these. Most of the available evidence uncovered by this rapid review comes from Sub-Saharan Africa, and is from a mix of academic and grey literature. Evidence gaps remain. The available literature has focused more on studying the victims of stigmatisation than the stigmatisers. 

Rituals of knowing: rejection and relation in disability theology and Meister Eckhart

SMITH, Daniel G W
2017

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One of the most powerful claims of disability theology is that the rejection of persons with disabilities somehow correlates with a rejection of God. This ‘correlative rejection’ is, however, frequently just stated rather than explored in detail, something this article therefore seeks to remedy by examining one example of the correlative rejection that draws together the ethical concerns of theologians writing on intellectual disability with Meister Eckhart’s teaching on the human relationship with God. Here, the correla- tive rejection is exposed as an inevitable result of the narrow emphasis on autonomy and rationality in human self-perception which shape the habituated, even ritualised ways that we try to know persons with intellectual disabilities and God. By contrast, truly knowing and relating to persons with intellectual disabilities, God, and finally also ourselves, relies on a reconciliation with the dependence, vulnerability, and non-rational forms of exchange that a narrow attachment to autonomy and rationality seems directly to occlude. The correlative rejection thus signals both a practical and epistemological problem which results from how we view ourselves and how we subsequently relate to and try to know others, the harmful effects of which are both ethical and spiritual.

Exploring the Complexities of Leprosy-related Stigma and the Potential of a Socio-economic Intervention in a Public Health Context in Indonesia

DADUN, Dadun
PETERS, Ruth
LUSLI, Mimi
MIRANDA-GALARZA, Beatriz
VAN BRAKEL, Wim
ZWEEKHORST, Marjolein
DAMAYANTI, Rita
IRWANTO, Irwanto
BUNDERS, Joske
2016

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Purpose: This article explores the complexities of leprosy-related stigma and the potential effectiveness of a socio-economic intervention in Cirebon District, Indonesia.

 

Methods: A qualitative approach was adopted. 53 people affected by leprosy were interviewed, and 17 focus group discussions were conducted among people affected by leprosy, community and religious leaders, and health providers and other key persons who were all purposively selected.

 

Results:  People affected by leprosy face major socio-economic consequences. This was confirmed by key persons. Several opportunities for a possible socio-economic intervention were perceived, as also the barriers. People affected by leprosy are constrained by certain aspects of the health system (e.g., the health providers’ negative attitudes), views in society (e.g., misunderstandings about the condition, stigma), and the physical and social consequences of the disease (impairments, feelings of shame). Study participants identified strategies to deal with these barriers, as well as specific activities for a socio-economic intervention; in particular, the training of staff responsible for implementation.

 

Conclusion and Implications: Socio-economic interventions in the field of leprosy need to anticipate the barriers and develop strategies to deal with them. Cooperation between people working in the health system and those in the welfare / financial system is needed, to improve the quality of life of people affected by leprosy

An Opportunity for Charity? A Catholic Tradition in Understanding Disability and Its Impact on Ministry

MASTERS, Anne
2016

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David Perry, the father of a boy with Down Syndrome, wrote an angry reaction to Pope Francis’ references to individuals and families living with disabilities in Amoris Laetitia. Perry is con- cerned about the limited perspective of persons with disabilities that is portrayed in the texts, which show families commended for their love and tolerance, with a lack of appreciation for the person with a disability as a person of interest, rather than an object of pity. He offers further reflections of caution and hope in response to words and actions of Pope Francis during a Mass celebrating disability awareness. Perry’s comments provide the starting point for reflecting on the image of persons with disabilities presented in Amoris Laetitia and a discussion of possibilities for charity to serve as a corrective for this and pastoral practice.

Perspectives in musculoskeletal injury management by traditional bone setters in Ashanti, Ghana

EDUSEI, Anthony K
OWUSU-ANSAH, Frances E
DOGBE, Joslin A
MORGAN, Julia
SARPONG, Kofi
2015

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Background: The popularity of the services of traditional bone setters (TBS) in Ghana as an alternative health care requires exploration and documentation of the perspectives of providers and users. 

 

Objective: To explore and document the perspectives of providers and users of the services of TBS in the management of musculoskeletal injuries in the Ashanti region, Ghana.

 

Methods: From the social constructivist and qualitative approach, in-depth interviews were used to explore the perspectives of eight TBS and 16 users of their services, selected purposively through snowballing. Thematic content analysis (TCA) was employed.

 

Results: High recovery rate, warm reception, prompt attention, and the relatively lower charges, are reported to motivate the patronage of the services of TBS for the management of fractures in the legs, arms, ribs, joint bones dislocations, waist and spinal cord problems. The TBS combined traditional and orthodox procedures, using plant and animal-based materials, beliefs, spirituality (God-given) and physical therapy in the management of musculoskeletal injuries. No adverse experience was reported by either the providers or users of the traditional management methods.

 

Conclusion: With plant and animal-based materials, TBS are observed to combine traditional and orthodox procedures to confidently manage musculoskeletal injuries to the satisfaction of their highly motivated patrons. Although over 60% of the TBS attribute the healing power behind their practice to God, the rest do not discount the role of spiritual therapy. Further studies expanded to include the perspectives of non-users of the services of the TBS will authenticate the findings of this study.

Towards an Inclusive Society in Cameroon: Understanding the Perceptions of Students in University of Yaounde II about Persons with Disabilities

Opoku, Maxwell Peprah
Badu, Eric
Moitui, oash Ntenga
2015

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Purpose: Disability cuts across every society and all spheres of life. For an inclusive society, it is important to understand people’s perceptions about persons with disabilities. However, there seems to be limited information, particularly about the perceptions of students who are the generation of future policy-makers. This study examines the perceptions of students in the University of Yaoundé II about persons with disabilities in Cameroon.

 

Methods: A cross sectional study design using quantitative methods was employed with a sample of students at the University of Yaoundé II. A questionnaire was used to gather information from 500 students selected by simple random sampling. The data analysis involved descriptive and inferential statistics at 95% CI.

 

Results: Among the participants, 51.8% were males, 89.2% were single and the average age was 24.9 years. Findings showed that 69.8% did not know about the actual population of persons with disabilities in Cameroon, though 14.6% had relatives with disabilities. None of the students perceived disability as a contagious condition, and 79.8% agreed that education had influenced their perceptions about persons with disabilities. Gender and education level had significant relationship with changes in perception (OR=1.8; p=0.01 and OR=1.91; p=0.04). However, 13.5% were unwilling to work with a person with disability in the future.

 

Conclusion: The findings suggest that issues of disability have not been taken into consideration in Cameroon. Therefore, there is the need for education and sensitisation of the general population towards disability. Additionally, policy- makers should factor persons with disabilities into national strategic plans, in order to ensure an inclusive society.

Nigerian Realities: Can we ignore Traditional Leadership in developing successful CBR?

VERMEER, Bertine
CORNIELJE, Marije T
CORNIELJE, Huib
POST, Erik B
IDAH, Mike A
2015

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Purpose: To study the role of traditional leaders (Sarakuna) who provide a form of social welfare for persons with disabilities in the Hausa society of Northern Nigeria. From the results of this study, lessons are derived for cooperation with Sarakuna in (emerging) Community Based Rehabilitation programmes.

 

Methods: A literature study was done using different (non-)electronic sources. In addition, 26 semi-structured interviews were conducted with different stakeholders (e.g., non-governmental organisations, disabled people’s organisations), and 8 focus group discussions were held with (leaders of) persons with a disability. Question-led analysis was utilised by considering 4 dimensions: rehabilitation outcomes, rehabilitation services, involvement of beneficiaries, and social acceptability.

 

Results: Not much literature is available on the role of traditional leadership in rehabilitation programmes and social welfare. Nevertheless, this study found indications that traditional leadership is still present in contemporary NorthernNigeria. Some Sarakuna improve the socio-economic position of persons with disabilities by functioning as mediators and by their ability to provide social insurance. Their cooperation with multiple stakeholders enables them to distribute food and clothes. Also, since they possess essential information, NGOs are helped to access the community of persons with disabilities. Sarakuna are in a position to promote the inclusion and rehabilitation of persons with disabilities, but often lack necessary skills and training; yet, Community Based Rehabilitation programmes often ignore them.

 

Conclusions and Implications: Community Based Rehabilitation programmes should take better note of social contexts and therefore should also work in the specific context of traditional leadership. In this way, rehabilitation programmes are more likely to meet the expectations of persons with disability.

Using Postcolonial Perspectives to Consider Rehabilitation with Children with Disabilities: The Bamenda-Toronto Dialogue

NIXON, Stephanie A
COCKBURN, Lynn
ACHEINEGEH, Ruth
BRADLEY, Kim
CAMERON, Debra
MUE, Peter N
SAMUEL, Nyingcho
GIBSON, Barbara E
2015

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This article discusses tensions in children’s rehabilitation that came to light through a series of ‘postcolonial dialogues’ amongst Canadian and Cameroonian participants. We defined ‘tensions’ as conflicts, contrasting ways of seeing things, and/or taken-forgranted ideas that shape issues related to rehabilitation for children with disabilities. These tensions were identified, articulated, and deconstructed through an iterative, multi-phase dialogue among eight individuals who identify as people with disabilities, rehabilitation providers, and/or rehabilitation researchers in Cameroon and Canada. The tensions discussed in this article problematize conceptualizations of disability and of client-centred care, the role of pain as a reinforcement tool in rehabilitation, and assumptions about poverty and religion in the context of rehabilitation practice. We present this synthesis to achieve several aims: (1) to provide multiple ways for rehabilitation providers and others to better understand these particular substantive issues; (2) to model the use of a critical lens as an approach for thinking about rehabilitation that promotes reflective and deliberate practice and that can be applied across contexts; and, (3) to promote dialogue about postcolonial and other critical perspectives on rehabilitation with children and with other groups.

 

Disability and the Global South (DGS), 2015, Vol. 2 No. 2

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