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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?

An observation study of power practices and participation in group homes for people with intellectual disability

SVANELÖV, Eric
2019

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This study explored how participation constitutes and is constituted by practices of power in group homes for people with intellectual disability. The study used disciplinary power as theoretical perspective and was based on 50 h of observation in two group homes with a total of 15 residents. The analysis identifies practices of power and their relationship to individual agency and participation. The results show that institutional structures construct practices of power that define codes of conduct for the group home residents and their possibility for participation. This study offers implications for the daily lives of residents in group homes for people with intellectual disability.

Access to primary care for persons with spinal cord injuries in the greater Gaborone area, Botswana

PAULUS-MOKGACHANE, Thato M.M.
VISAGIE, Surona J.
MJI, Gubele
September 2019

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Background: People with spinal cord injury (SCI) often have great need for healthcare services, but they report access challenges. Primary care access to people with SCI has not been explored in Botswana.

 

Objective: This study aimed to identify barriers and facilitators that users with spinal cord injuries experience in accessing primary care services in the greater Gaborone area, Botswana.

 

Methods: A quantitative, cross-sectional, observational study was conducted. Data were collected with a structured questionnaire from 57 participants with traumatic and non-traumatic SCI. Descriptive and inferential analysis was performed.

 

Results: The male to female ratio was 2.8:1. The mean age of participants was 40 years (standard deviation 9.59). Road traffic crashes caused 85% of the injuries. Most participants visited primary care facilities between 2 and 10 times in the 6 months before the study. Participants were satisfied with the services (63%) and felt that facilities were clean (95%) and well maintained (73.5%). Preferential treatment, respect, short waiting times and convenient hours facilitated satisfaction with services. Availability was hampered by insufficient provider knowledge on SCI as indicated by 71.9% of participants, and shortage of consumables (80.7%). Structural challenges (42.1% could not enter the facility by themselves and 56.5% could not use the bathroom) and lack of height-adjustable examining couches (66.7%) impeded accessibility. Cost was incurred when participants (64.9%) utilised private health services where public services failed to address their needs.

 

Conclusion: Primary care services were mostly affordable and adequate. Availability, acceptability and accessibility aspects created barriers.

 

 

African Journal of Disability, Vol 8, 2019

Investigation of physical and functional impairments experienced by people with active tuberculosis infection: A feasibility pilot study

Van ASWEGEN, Heleen
ROOS, Ronel
McCREE, Melanie
QUINN, Samantha
MER, Mervyn
August 2019

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Background: Tuberculosis (TB) remains a significant healthcare problem. Understanding physical and functional impairments that patients with active TB present with at the time of diagnosis and how these impairments change over time while they receive anti-TB therapy is important in developing appropriate rehabilitation programmes to optimise patients’ recovery.

 

Objectives: The aim of this study was to assess the acceptability, implementation and practicality of conducting a prospective, observational and longitudinal trial to describe physical and functional impairments of patients with active TB.

 

Method: A feasibility pilot study was performed. Patients with acute pulmonary TB admitted to an urban quaternary-level hospital were recruited. Physical (muscle architecture, mass and power, balance, and breathlessness) and functional (exercise capacity) outcomes were assessed in hospital, and at 6 weeks and 6 months post-discharge. Descriptive statistics were used to analyse the data.

 

Results: High dropout (n = 5; 41.7%) and mortality (n = 4; 33.3%) rates were observed. Limitations identified regarding study feasibility included participant recruitment rate, equipment availability and suitability of outcome measures. Participants’ mean age was 31.5 (9.1) years and the majority were human immunodeficiency virus (HIV) positive (n = 9; 75%). Non-significant changes in muscle architecture and power were observed over 6 months. Balance impairment was highlighted when vision was removed during testing. Some improvements in 6-minute walk test distance were observed between hospitalisation and 6 months.

 

Conclusion: Success of a longitudinal observational trial is dependent on securing adequate funding to address limitations observed related to equipment availability, staffing levels, participant recruitment from additional study sites and participant follow-up at community level. Participants’ physical and functional recovery during anti-TB therapy seems to be limited by neuromusculoskeletal factors.

 

 

African Journal of Disability, Vol 8, 2019

Changes in social participation of persons affected by leprosy, before and after multidrug therapy, in an endemic state in Eastern India

RAMASAMAY, Senthilkumar
2019

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Purpose: In general, multidrug therapy (MDT) completion rate and the change in disability levels before and after medical treatment are reported as outcomes in leprosy programmes. Changes in activity and social participation levels are rarely reported, possibly because the parameters are more difficult to measure. The study aimed to assess and evaluate the changes in social participation among leprosy-affected persons after completion of MDT.

 

Method: An observational study was conducted among 108 newly-diagnosed leprosy- affected clients, who were registered at the Leprosy Referral Hospital in Champa, Chhattisgarh. Their disability levels pre- and post- MDT were assessed using the WHO Disability Grading, and their social participation level was assessed using the Participation Scale.

 

Results: Of the 108 clients registered during the study period, 90 completed the full course of MDT and were included in the analysis. The majority of these 90 clients or 83% were multibacillary and 23% had Grade 2 disability at the time of diagnosis. At the end of MDT with steroids therapy for reaction and neuritis, the proportion of clients with no participation restriction increased from 76% to 93%. Clients with visible impairments had more restriction as compared to those with no deformity or no visible deformity, before and after MDT. Among those with visible impairments, 78% had mild to severe restriction before MDT and it declined to 26% on completion of treatment.

 

Conclusion: Presence of Grade 2 disability at the time of diagnosis was significantly associated with participation restriction. MDT and steroid therapy for management of reaction and/or neuritis improves the participation level of leprosy-affected clients, suggesting that early detection and appropriate management would reduce their risk of participation restriction.

Persons with profound intellectual disability and their right to sex

VEHMAS, Simo
2019

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This article discusses sexuality and sexual rights of persons with profound intellectual and multiple disabilities. I will address the issue by reflecting on my own previous negligence about the issue, and unpack the ethics of sexuality of persons with profound intellectual disability in the light of ethnographic observation and interview data. I will discuss the significance of cognitive and communicative capacities as regards sexual rights as well as the boundaries of ethically justified facilitation of sex. I will also analyse the definition of sex and its ethical implications. Finally, I will offer some reflections on how we should consider more carefully in research the sexuality of persons with profound intellectual and multiple disabilities in order to enhance in practice their sexual fulfilment.

Inclusive education in the global South? A Colombian perspective: ‘When you look towards the past, you see children with disabilities, and if you look towards the future, what you see is diverse learners.’

KAMENOPOULOU, Leda
2018

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The findings of the research presented in this paper come in the aftermath of a momentous year for Colombia, a year that saw a historic peace deal signed between the government and the biggest left-wing guerrilla group (FARC) with the aim of bringing an over 50 year civil war to a long awaited conclusion. At a time when the Colombian people are being required to genuinely reflect on what inclusion means to them and how best they can achieve it within their deeply diverse society, I present findings from an ethnographic research that I conducted on inclusion in education focusing on the capital, Bogotá. The research foci were a) inclusive education in practice, b) teacher preparation for inclusive education, and c) local understanding of inclusive education. Findings include a local understanding of inclusive education as synonymous with disability, special teachers as synonymous with inclusive education in practice, and big gaps in teacher preparation for inclusive education. Based on these findings, I emphasise that inclusive education is a global North-created concept, which can acquire different meanings in global South contexts, and I argue that Colombia in particular needs time to make its own understanding of inclusive education a priority.

 

Disability and the Global South, 2018 Vol.5, No. 1

Towards a new directional turn? Directors with cognitive disabilities

SCHMIDT, Yvonne
2017

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Drawing from my first-hand observations and embodied experiences of having collaborated with HORA over the course of several years, this paper discusses an under-investigated area within the field of disability and performance: pioneering work by directors and with learning or cognitive disabilities, an area which has not yet been addressed in the expanding field of disability and performance studies.

How nursing home residents with dementia respond to the interactive art installation ‘VENSTER’: a pilot study

LUYTEN, Tom
BRAUN, Susy
JAMIN, Gaston
VAN HOOREN, Susan
DE WITTE, Luc
2017

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The goal of this study was (1) to determine whether and how nursing home residents with dementia respond to the interactive art installation in general and (2) to identify whether responses change when the content type and, therefore, the nature of the interaction with the artwork changes. The interactive art installation ‘VENSTER’ evokes responses in nursing home residents with dementia, illustrating the potential of interactive artworks in the nursing home environment. Frequently observed responses were naming, recognizing or asking questions about depicted content and how the installation worked, physically gesturing towards or tapping on the screen and tapping or singing along to the music. It seemed content matters a lot. When VENSTER is to be used in routine care, the choice of a type of content is critical to the intended experience/usage in practice. In this study, recognition seemed to trigger memory and (in most cases) a verbal reaction, while indistinctness led to asking for more information. When (initially) coached by a care provider, residents actively engaged physically with the screen. Responses differed between content types, which makes it important to further explore different types of content and content as an interface to provide meaningful experiences for nursing home residents.

The Use of the International Classification of Functioning, Disability and Health in Primary Care: Findings of Exploratory Implementation Throughout Life

PRINZIE, Peter
LEBEER, Jo
PRINZIE, Peter
2016

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Purpose:   The International Classification of Functioning (ICF) has found widespread acceptance since it was launched in 2001. Yet, little is known about its use in Primary Care. This paper aims to contribute to the dialogue about the practical use of the ICF by exploring how this framework constitutes a supplementary source to inform disability-related decision making in integrated Primary Care.

 

Method: The implementation process of the ICF in a Latin American Primary Care and Community-Based Rehabilitation setting is described and the ICF diagram is applied to a life story as an example of its current use. Participant observation, in-depth study of reports of team meetings and the review of clinical files are the main data collection methods. Data analysis is enabled by the combination of single-case study with theory testing, which facilitates the generation of hypotheses in this exploratory study.

 

Results: A valuable time component of the ICF may support continuity in Primary Care and the universal application of the ICF framework can promote comprehensiveness by integrating individual rehabilitation and collective disability prevention. A way to mitigate the perceived dominance of biomedical disease and deficiency thinking is proposed in order to encourage the biopsychosocial focus of Primary Care. Finally, the implementation of the International Classification of Diseases (ICD-10) in the health condition domain of the ICF highlights the importance of social responsibility towards disability.

 

Conclusion: This study suggests that a creative implementation of the ICF during life course to everyone who uses universally accessible healthcare may strengthen the integrative functions of Primary Care, and may be at the heart of the information system of this essential part of the healthcare system. Further research on the complementary use of ICF and ICD-10 is suggested in order to support community-based multisectoral intervention which may be coordinated by Primary Care.

Living with disabled children in Malawi: Challenges and rewards

BARLINDHAUG, Grete
UMAR, Eric
WAZAKILI, Margaret
EMAUS, Nina
2016

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Background: Rehabilitation personnel need to be sensitive to the cultural aspects that constitute the environment of a disabled child’s family life.

 

Objectives: The aim of this study was to gain insight on how families experience parenting of disabled children and how the families experience the support provided by the rehabilitation system in Malawi.

 

Method: An anthropological field study combining interviews and observations was conducted in a rural district of Malawi in 2011. Permission was granted to follow four families, and this study presents the stories of two families, whose children have severe disabilities. We used phenomenological and narrative analyses to make sense of the stories.

 

Results: The findings indicate that families with disabled children invest time and emphasise care for their disabled children. They feel enriched by their experience despite challenging situations with little support from the rehabilitation services. High standards of care demonstrating positive and moral attitudes have earned these families respect in their communities. Storytelling has created an opportunity for the families to understand and interpret their challenging situation with inherent contextual meaning.

 

Conclusion: This study shows that families with disabled children draw on cultural and structural strengths that rehabilitation professionals should be aware of in their support to mothers and other caregivers of children with disabilities.

Labeling albinism: language and discourse surrounding people with albinism in Tanzania

BROCCO, Giorgio
2015

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This article is based on a qualitative study that set out to analyze the labels and terms attached to 28 people affected by albinism in villages in Kilolo district, Tanzania. Even though national and international attention to killings of people with albinism has attempted to improve general knowledge of albinism and reduce discrimination, most of the community members within the study had lit- tle knowledge of the (bio)medical explanations for albinism and tended to marginalize people with albinism. Framed within a wider moral discourse on ill- ness, disability and socially appropriate behavior, albinism is mostly considered to be God’s will or the consequence of past misdeeds within the family, and many of the existing labels for people with albinism express such ideas.

Vietnam’s children’s experiences of being visually or hearing impaired

BURR, Rachel
2015

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This paper focuses on the experiences of visually and hearing impaired children in Vietnam, a country where lay-based cultural beliefs predominantly shape understanding of any form of disability. The practice of ancestral worship informs a belief that disabilities are a punishment for wrong deeds in past lives, and as a result people with disabilities are often marginalized. Such reactions are sometimes taken to extremes: circumstantial evidence suggests that disabled children are even likely to be killed at birth. Others might simply be hidden away or rejected into the local orphanage. This paper discusses the therapeutic support on offer to children attending two types of educational settings, and explores how the wider school and local community considered and treated such children, examining the chosen forms of intervention in each institution from an ethnographic perspective. The first was a mainstream school with a specialist vocational training unit for visually impaired children, and the second was a specialist school for children who were hearing impaired and who were taught only to lip read and speak.

 

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

Health-related quality of life of patients six months poststroke living in the Western Cape, South Africa

RHODA, Anthea, J
2014

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Background: The majority of individuals report a decline in health-related quality of life following a stroke. Quality of life and factors predicting quality of life could differ in individuals from lower income countries. The aim of this study was therefore to determine the quality of life and factors influencing quality of life of community-dwelling stroke patients living in low-income, peri-urban areas in the Western Cape, South Africa.

 

Method: An observational, longitudinal study was used to collect data from a conveniently selected sample of first-ever stroke patients. The Rivermead Motor Assessment Scale and the Barthel Index were used to determine functional outcome and the EQ-5D was used to collect information relating to quality of life at two months and six months poststroke. Descriptive and inferential statistics were used to analyse the data.

 

Results: The total sample of 100 participants consisted of 50% men and 50% women with a mean age of 61 and a standard deviation of 10.55 years. Six-month quality of life datawas analysed for 73 of the 100 participants. Of the 27 who were lost to follow-up, nine participants died, four withdrew from the study after baseline data was collected and eleven could not be followed up as they had either moved or no follow-up telephone numbers were available. A further three participants were excluded from the analysis of the EQ-5D as they were aphasic. Of these, approximately 35% had problems with mobility and self-care, whilst 42% had severe problems with everyday activities and 37.8% expressed having anxiety and depression. Quality of life at two months (p = 0.010) and urinary incontinence (p = 0.002) were significant predictors of quality of life at six months.

 

Conclusion: Health-related quality of life was decreased in the South African stroke sample. Functional ability and urinary incontinence were the factors affecting quality of life in the sample. These factors should be considered in the rehabilitation of stroke patients in these settings.

Recognising the agency of people with dementia

BOYLE, Geraldine
May 2014

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People with dementia have been assumed to possess weak or even no agency, so this paper provides a novel contribution to academic debate by examining their actual potential for agency. The author draws on findings from a qualitative study of everyday decision-making by people with dementia that aimed to iden- tify the role of social factors (such as gender) in influencing their involvement in decisions. Whilst decision-making constitutes a form of deliberative agency, the research also identified when agency was alternatively habituated, embodied or emotional. The Economic and Social Research Council-funded research was undertaken in the North of England. Existing theoretical perspectives on agency are critiqued, particularly in relation to rationality, language and individualised agency. The study highlighted that people with dementia who lack deliberative capacity can nonetheless demonstrate creative capacity for agency. A more expansive concept of agency is needed in social science theory that is informed by the experiences of cognitively disabled people.

Facilitating disability inclusion in poverty reduction processes: Group consensus perspectives from disability stakeholders in Uganda, Malawi, Ethiopia, and Sierra Leone

MACLACHLAN, Malcolm
MJI, Gubela
CHATAIKA, Tsitsi
WAZAKILI, Margaret
DUBE, Andrew K
MULUMBA, Moses
MASSAH, Boniface
WAKENE, Dagnachew
KALLON, Frank
MAUGHAN, Marcella
2014

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This paper addresses the challenge of how to get disability on the development agenda in four African countries. We explored perceptions of what initiatives would most help in achieving disability inclusion in Poverty Reduction Strategy Papers (PRSPs), and identified factors that can either promote or hinder these initiatives. Stakeholders from Disabled People’s Organisations (DPOs), other civil society organisations (CSOs), development agencies, researchers and government ministries, participated in the Nominal Group Technique and Force Field Analysis procedures across Malawi, Ethiopia, Uganda and Sierra Leone. While each country had specific contextual factors, common ideas for promoting greater disability inclusion in PRSPs focused on policy action, the need for a stronger evidence-base, mechanisms for directly influencing the PRSP process, as well as strengthening central government and DPOs’ capacity in this regard. Common facilitators for these actions were seen as the existence of a national disability umbrella body, disability-specific legislation, named Ministries for Disability, ratification of the UN Convention on the Rights of Persons with Disabilities (UNCRPD), and the fact that disability was already mentioned (albeit inadequately) in some PRSPs. Common inhibitors included negative attitudes towards disability, poor capacity in DPOs and government ministries, poor policy implementation, little ‘domestication’ of the UNCRPD, little political will or consultation with people with disabilities, as well as aggregating disability with other vulnerable groups, a lack of research in the area and poor coordination between DPOs.

 

Disability and the Global South (DGS), 2014, Vol. 1 No. 1

Journey through the Trials and Triumphs of Disability

LAAS, Helen L
2012

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One Woman’s journey through the Trials and Triumphs of Disability, Disabled Peoples International 8th World Assembly 2011 Durban, South Africa, October 10–13, 2011. When embarking on my career as a teacher at a special school in South Africa, I never thought that a motor vehicle accident would place me in the position where my learners with disabilities suddenly saw me as an ally. Little did I realise the chasm that exists between able-bodied people and people with disabilities, or the remarkable role I would find myself in whilst actively addressing disability and Inclusive Education issues. My experiences with disability in South Africa drew encouraging attention from delegates at the Disabled People’s International 8th World Assembly when I shared my story. The resounding positive response affirmed that my experiences are not unique to nationality, gender, race or age, and are typical of the time and country in which I live, where people with disabilities are considered to have little potential, and woman with disabilities are further marginalised. In the infancy of our democracy, we are still in the early days of attending to equity amongst all South Africans. This story comprises both a narrative and a graphic presentation which run parallel, although not always telling an identical story; they complement one another and should be experienced simultaneously. Ultimately, it relates the success that can be achieved by pro-active people with disabilities as members of the South African society within their own spheres of knowledge and skill to change attitudes and practices of people without disabilities in education and local communities.

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