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Narratives Around Concealment and Agency for Stigma-reduction: A study of Women affected by Leprosy in Cirebon District, Indonesia

PETERS, R. M. H
HOFKER, M. E
VAN BRAKEL, W H
ZWEEKHORST, M B M
SEDA, F S S E
IRWANTO, I
BUNDERS, J F G
2014

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Purpose: This study analyses the experiences of women affected by leprosy, taking into consideration whether they concealed or disclosed their status, and looks specifically at their ‘agency’. The aim is to provide recommendations for stigma-reduction interventions.

 

Methods: The study population consisted of women affected by leprosy who live in Cirebon District, Indonesia. Study subjects were purposively selected on the basis of characteristics such as age and role in the community. After informed consent was obtained, they were interviewed in their homes. Data was collected through semi-structured in-depth interviews. Analysis was done with six points of focus: who knows, care, social stigma, feelings, self-isolation and agency.

 

Results: In total, 53 women were interviewed. Eight were omitted due to ambiguity over who knew about their leprosy status. Five different categories of ‘disclosure’ were identified, ranging from 1 woman who concealed completely to 19 (42%) who disclosed fully. Disclosure created possibilities for care and support, which 84% mentioned they received. In contrast, disclosure was also found to be linked to negative feelings, isolation and social stigma, which 18 women experienced. The women coped with this through acceptance, comforting themselves, trusting in God, focussing on recovery, friendship or finding inspiration in others. 

 

Conclusions: An analysis of these experiences helps to understand how women affected by leprosy are coping, and what they are already doing for and by themselves. This could be a starting point for more appropriate and effective stigma-reduction interventions. It is recommended to consider the following: i) assisting people with their choice, if any, of either concealment or disclosure, ii) the appropriateness of any intervention for people who (want to) conceal their illness, iii) the existing sources of care and support, and iv) the inner strength demonstrated and its three sources (spirituality, relationships and the desire to be cured).

Barriers to Early Diagnosis, Intervention and Social Integration of Children with Developmental Disabilities: A Qualitative Study from Rural Villages and a Poor Urban Settlement of Bangalore, South India

GEORGE, C E
NORMAN, G
BENJAMIN, T E
MUKHERJEE, D
2014

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Purpose: Children with developmental disabilities, if given skilled early intervention, have the potential to lead productive lives and can contribute to the social and economic development of their communities. This study explores the barriers to early diagnosis and intervention for children with developmental disabilities who live in rural and urban areas of Bangalore city, India.

 

Methods: The study was conducted in selected villages of Devanahalli Taluk in Bangalore Rural District, and in Devara Jeevanahalli (DJ Halli), a shanty town in Bangalore city. The qualitative study design consisted of in-depth interviews and focus group discussions (FGDs).Parents of children with developmental disabilities, doctors practising in the area and school teachers were interviewed using a purposive sampling framework. An inductive, data-driven thematic analysis was carried out.

 

Results: The physician-related barriers were identified as lack of skills and understanding of children with developmental disabilities, lack of knowledge and resources, lack of specialist back-up services, and communication difficulties with regard to conveying bad news to clients. Parent-related barriers were financial constraints, delay in accepting the diagnosis, and prevalent myths, beliefs and stigma pertaining to disability. The teachers viewed children with special needs as an additional responsibility, and were also apprehensive about the attitudes and interaction of other children at school with children with disabilities.

What has worked for Bringing Out-of-school Children with Disabilities into Regular Schools? A Literature Review

SHARMA, U
NG, O
2014

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Purpose: A literature review was undertaken to determine (a) what is currently being done to bring out-of-school children into schools and retain them there; (b) what has succeeded in bringing out-of-school children into schools and retaining them;and (c) what is being done to bring out-of-school children with disabilities into schools?

 

Methods: Various databases were searched to identify relevant articles for the review. Only articles published after the year 2000 were included in the analysis.

 

Results: A total of 23 articles were reviewed. The review identified economical, socio-cultural and school-related variables that contribute to children being excluded from schooling. Various strategies that have worked to bring out-of-school children into schools include alternative education, rebates and incentives, and community awareness programmes.

 

Conclusions and Implications: The review found that there is insufficient research on out-of-school children with disabilities. However, research on the population of children without disabilities has implications that can be relevant to children with disabilities.

Factors that influence doctors in the assessment of applicants for disability grant

TUMBO, JM
2014

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Background: A disability grant is the financial assistance given by the government to South African citizens and bona fide refugees who have debility that results in inability to work. Doctors in state hospitals and clinics are tasked with the duty of assessing applicants for this grant. Ideally, the assessment is done by an institutional committee consisting of a doctor, physiotherapist, social worker, occupational therapist and specialised nurses. However, this is not always the case because of a shortage of personnel, particularly in rural areas. A lack of clear guidelines for the assessment process has led to confusion and differences in the outcomes. This poses major problems for the doctors, as well as the applicants, who often are dependent on the grant for survival. The aim of this study was to explore the factors that influence doctors in the assessment of applicants for a disability grant.

 

Methods: A qualitative study using free attitude interviews was conducted amongst doctors involved in the assessment process in Limpopo province. Content analysis was used to identify themes from the interviews.

 

Results: The assessment process was not entirely objective and was influenced by subjective factors. These included the mood of the doctors, emotions such as anger and sympathy, and feelings of desperation. Perceptions by the doctors regarding abuse of the system, abuse of the grant, the inappropriateness of the task, lack of clear guidelines and the usefulness of the committees were important in decision making. The doctors’ personal life experiences were a major determinant of the outcome of the application.

 

Conclusion: The assessment of applicants for a disability grant is a subjective and emotional task. There is need for policy makers to appreciate the difficulties inherent in the current medicalised process. Demedicalisation of certain aspects of disability assessment and other social needs that doctors do not view as a purely clinical functions is necessary. In addition, there is a need for clear, uniform policy on and guidelines for the management of the grant, the role of the doctor has to be defined, healthcare practitioners must be trained in disability assessment, institutional committees should be established and intersectoral initiatives should be encouraged to address issues of poverty and dependence.

Breaking the Barriers: Ghanaians’ Perspectives about the Social Model

NAAMI, A
2014

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Purpose: The social model of disability emphasises the identification and removal of barriers to the inclusion of persons with disabilities in mainstream society. The study examines issues associated with the exclusion of women with physical disabilities in Tamale, Ghana, and makes recommendations for the effective participation and inclusion of persons with disabilities, especially the women, in society.

 

Method: Data were gathered through in-depth individual interviews and focus group discussions. Purposive and snowball sampling were used to recruit 10 women with physical disabilities for the in-depth interviews. Purposive sampling was also used to recruit 14 representatives from government and civil society organisations for 2 multi-organisational focus groups. Using open coding and line-by-line analysis, themes and categories were identified. Themes that emerged from the focus groups and from the individual interviews were compared and contrasted to arrive at conclusions about the participation of women with physical disabilities in mainstream society.

 

Results: Study participants identified barriers (attitudinal, institutional, architectural, transportation, and information) and suggested methods to eradicate them and foster inclusion. At the same time they felt that it was equally important to change certain attitudes of persons with disabilities (ignorance about available resources, opportunities and potential, low levels of self-confidence, and negative reactions to societal attitudes) which contribute to their exclusion from society.

 

Conclusion: Advocacy interventions are recommended, which include public education, building relationships and mobilising the public for advocacy campaigns. Decision-makers need to be persuaded to make additional policies and/or enforce existing ones, to promote the inclusion and effective participation of persons with disabilities in society.

Knowledge and use of contraceptive methods amongst deaf people in Ghana

MPRAH, Wisdom K
2013

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Background: Persons with disabilities in general face serious barriers to sexual and reproductive health (SRH) information and services due to institutional and attitudinal barriers. However, because deaf people have unique communication and linguistic needs, which are often misunderstood or ignored, they face greater barriers than other persons with disabilities. Whilst available data indicated that there is a wide gap between knowledge and usage of contraceptive amongst Ghanaians, little is known about the level of contraceptive knowledge and usage amongst deaf people.

 

Objectives: The objective of the study was to investigate the level of knowledge and use of contraceptive methods amongst deaf people in Ghana with the aim of understanding their contraceptive behaviour and to improve access.

 

Method: The study was a participatory SRH needs assessment utilising a two-phase, sequential, mixed methods design. The study included 179 participants, consisting of focus groups with seven executives of Ghana National Association of the Deaf (GNAD), 10 male deaf adults, and 9 deaf female adults. A total of 152 deaf people, made up of students, women, and men participated in a survey, whilst one hearing person served as a key informant.

 

Results: The findings of the study indicated that of the 13 methods shown in the survey, only three were known to about 70% of the adults and 60% of the students. Level of knowledge of the remaining nine methods was low.

 

Conclusion: Clear and effective policies are needed to guide the provision of SRH information and services for deaf people in Ghana.

Disabling sexualities: Exploring the impact of the intersection of HIV, disability and gender on the sexualities of women in Zambia

WICKENDEN, Anna
NIXON, Stephanie
YOSHIDA, Karen K
2013

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Background: Women with a disability are often characterised as a homogenous social group consigned to a cultural stereotype with assumptions of dependence, asexuality and gender neutrality. Furthermore, there is a void of research about the experience of people with disabilities following diagnosis with HIV. Little is known about how HIV diagnosis intersects with disability and gender and how it shapes the experiences of intimacy and gender roles of those negotiating this intersection.

 

Objective: The objective of this study was to explore how HIV, disability and gender shape the perspectives of HIV-positive women with disabilities regarding intimacy and gender roles.

 

Methods: Twelve women in Lusaka, Zambia were recruited for in-depth semi-structured interviews to explore their experiences of having a disability and living with HIV. Interviews were conducted in English, Bemba, Nyanja and Zambian sign language. Descriptive and thematic analyses were conducted, followed by in-depth gender analyses of data relating to intimacy and gender roles.

 

Results: Data analysis led to the identification of two main themes: the impact of HIV diagnosis on intimate relationships amongst the participants; and the disruption and renegotiation of gender roles. These findings demonstrate the loss of intimacy (often decided by the participants) and changes in women’s gender roles (infrequently decided by them).

 

Conclusions: The narrow approaches to sexuality and HIV that reinforce misconceptions and stereotypes need to change. In their place should be inclusive and disability and sex-positive approaches that are informed by the diverse realities of women’s lives. Further research is needed to develop stronger evidence of the impact of HIV and disability on gender roles and sexuality.

Exploring Knowledge and Attitudes towards HIV/AIDS among Deaf People in Ghana

MPRAH, W K
2013

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Purpose: By exploring the level of knowledge about HIV/AIDS and attitudes towards persons with HIV/AIDS among deaf people in Ghana, this article aims to identify and correct possible gaps in awareness.

 

Method: A participatory sexual and reproductive health (SRH) needs assessment was conducted, targetting deaf people who were fluent in the Ghanaian Sign Language (GSL). The study design was a two-phase, sequential, mixed methods approach. Three focus groups assisted in the development of a survey, which was then implemented for needs assessment data collection. The 179 study participants consisted of 26 focus group participants, 152 survey respondents and 1 key informant. Of the focus group participants, 7 were executives of Ghana National Association of the Deaf (GNAD), 10 were adult males, and nine were adult females. Apart from the key informant, all the participants were deaf persons.

 

Results: The study indicated that many respondents still had misconceptions about HIV/AIDS and had difficulty identifying preventive methods, but their attitudes towards persons with HIV/AIDS was generally positive.

 

Conclusion: More attention needs to be paid to the requirements of the deaf community and to designing HIV/AIDS programmes and services that are deaf-friendly and accessible.

Challenges Faced by Malaysians with Disabilities in the World of Employment

TA, T L
LENG, K S
2013

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Purpose: This paper aims to explore and understand the challenges that are encountered by Malaysians with disabilities in the world of employment.

 

Method: A survey was undertaken in four Northern Malaysian states (Perlis, Kedah, Penang and Perak) to obtain the primary data. Two sets of questionnaires were formulated. The first questionnaire was addressed towards Malaysianpeople with disabilities, while the second one was for the employers. Descriptive statistics were used to explore, summarise and describe the data collected.

 

Results: This paper argues that integrating people with disabilities into the mainstream workforce should be the way forward, given that they are a pool of untapped human resources. Crucially, this study also highlights some of the key challenges faced by Malaysian people with disabilities, such as discrimination and exploitation at work.

 

Conclusions: This paper concludes that equal employment and training opportunities should be extended to Malaysian people with disabilities, in an effort to integrate them into the mainstream workforce. The existing Disability Act 2008 should be revised to address the challenges and issues highlighted in this paper.

Leprosy: Knowledge and Attitudes of Physiotherapists in Nigeria

AYANNIYI, O
DUNCAN, F O
ADENIYI, A F
2013

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Purpose: The objectives of this study were to investigate the knowledge and attitudes towards leprosy of physiotherapists in Nigeria.

 

Method: A cross-sectional survey of 330 physiotherapists, with minimum 1-year work experience in public hospitals in the 6 geo-political zones of Nigeria, was carried out. A pre-tested, self-administered questionnaire with open and close- ended questions was employed. Data obtained were analysed using descriptive and inferential statistics of Chi-square tests with Alpha level at 0.05.

 

Results: The respondents’ mean and range of years of job experience was 8.6 + 5.51 and 1 to 27 years respectively. Close to half (44.5%) of the physiotherapists had only a fair knowledge about leprosy and 165 (50%) had poor attitudes towards leprosy and persons with leprosy. There were significant associations between the schools of training and each level of knowledge (χ2 = 45.04; p = 0.0001) and attitudes of physiotherapists to leprosy and to persons who have suffered from leprosy (χ2 = 20.26; p = 0.009). There was, however, no significant association between years of job experience and each of knowledge (χ2 = 4.76; p = 0. 312), or attitudes of the physiotherapists to leprosy (χ2 = 4.55; p = 0.337).

 

Conclusions and Implications: It was concluded that a substantial number of physiotherapists in Nigeria had fair knowledge but poor attitudes towards leprosy. The institution of training appears to have an influence on their knowledge and attitudes. It is therefore recommended that educational and training programmes on leprosy should be organised and emphasised at the basic training institutions for physiotherapists.

Inclusive Education in Bangladesh: Are Pre-service Teachers Ready to Accept Students with Special Educational Needs in Regular Classes?

MALAK, M S
2013

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Purpose: The aim of this study was to examine pre-service special education (PSpE) teachers’ attitudes towards inclusive education (IE) for students with special educational needs (SEN) in Bangladesh.

 

Method: 100 PSpE teachers from a leading teacher education institute in Bangladesh were purposively sampled. A 20-item based survey questionnaire was used to measure participants’ attitudes. Items of the survey were developed from a literature review in which Attitudes Towards Inclusive Education Scale (ATIES) by Wilczenski (1992), Concern about Inclusive Education Scale (CIES) by Sharma and Desai (2002), and Interaction with Persons with a Disability (IPD) Scaled by Gething (1994) were considered as the key specialist resources. Both descriptive and inferential statistics were utilised in the analysis.

 

Results: The results revealed that while the PSpE teachers hold favourable attitudes towards students with SEN, they are concerned about some basic issues of inclusion. Practicum and close contact with children with SEN were found to be important variables which shaped the attitudes of the PSpE teachers. Implications of the findings are discussed and further suggestions are made as to how teacher education institutes may engage PSpE teachers more effectively with their programmes to promote better inclusive practices.

 

Conclusion: The study suggests that there is a need for providing PSpE teachers with experiential learning prior to school practicum.

Sexual Health of Women with Spinal Cord Injury in Bangladesh

LUBBERS, N P M
NURI, R P
VAN BRAKEL, W H
CORNIELJE, H
2012

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Purpose: To identify factors influencing the sexual health of women with spinal cord injury (SCI) in Bangladesh.

 

Methods: This study used both qualitative and quantitative methods. The quantitative part used a case-control design. Cases were women with SCI and controls were age-matched women without SCI. Questionnaires were used to collect data concerning the sexual health status of women. Multivariate logistic regression was done to determine which factors had an independent effect on sexual health. In-depth interviews were held with a sub-group of women from both groups, and interview guides were used. The in-depth interview data was subjected to content analysis.

 

Results: In total, 92 questionnaires were given out and 30 in-depth interviews were conducted. A relationship was found between physical factors and sexual health, as pain, vaginal dryness and physical discomfort were mentioned more frequently among women with SCI. Environmental and emotional factors such as stigma, satisfaction of the husband and support from the husband and friends had an influence on the sexual health of the women with SCI, as well as the other group of women.

 

Conclusions: From interviews it became clear that most of the women with SCI were dissatisfied with their sexual health as compared to the women without SCI. However, environmental and emotional factors such as attitudes, support and stigma, rather than physical factors, were the most important influences on sexual health in both groups of women.

Attitudes of Students towards Peers with Disability in an Inclusive School in Nigeria

OLALEYE, A
OGUNDELE, O
DEJI, S
AJAYI, O
OLALEYE, O
ADEYANJU, T
2012

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Purpose: The majority of children and young people with disabilities live in developing countries where they face inequalities in education and other opportunities. Negative attitudes constitute one of the major barriers to thedevelopment of their potential.

 

This study aimed to describe the attitudes of students without disability towards their peers with disability, and to assess the role that gender and interpersonal contact play in shaping these attitudes.

 

Method: A cross-sectional study involving 107 students was carried out at an inclusive secondary school located in a peri-urban area in South Western Nigeria.

 

Participants were recruited from a group of 118 students in the three junior classes and senior class one (JSS 1 to SSS 1). A semi-structured questionnaire containing items on the “Chedoke-McMaster Attitudes Towards Children with Handicaps (CATCH) scale”, which elicits responses on a Likert scale numbered 0 to 4 (0-strongly disagree, 4-strongly agree), was administered. Data analysis was done using Stata version 12. Descriptive analysis was carried out and association between variables was determined using independent two-tailed t-tests.

 

Results: The Cronbach’s alpha coefficient of the scale was 0.83. The attitudes of students in the school were generally positive (M = 22.55, SD = 3.79). Female students had higher total scores (M = 24.76, SD = 2.78) than their male contemporaries (M = 19.84, SD = 3.05), t (103) = 8.55, p = .000. Having a friend/relative with a disability was associated with more positive attitudes among female students.

 

Conclusions: In this inclusive setting, the attitudes of students towards their peers with disability were generally positive. Since interpersonal contact was associated with positive attitudes towards students with disabilities, interventions should be directed towards promoting interpersonal relationships in order to build an integrated society.

 

Inclusion of Children with Hearing Impairment in Schools: A Survey on Teachers’ Attitudes

PRAKASH, S S
2012

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Purpose: Inclusion of children with disabilities in mainstream classrooms has become the focus of extensive research in education. It has both academic and social benefits for all students, such as providing opportunities for communication and social interaction. The evaluation of teachers’ attitudes towards inclusion appears to be a good method to determine the success of the programme. Although this has been widely researched in many countries, the available evidence is not consistent. This study was undertaken in the state of Andhra Pradesh in India, to measure and compare teachers’ attitudes towards the inclusion of children with hearing impairment in schools.

 

Method: A questionnaire developed by Giles and Tanner (1995) measuring three domains - (1) effective strategies for meeting the needs of all students, (2) the support for educational change in their district, and (3) inclusive education - was modified in keeping with cultural and geographical variations and used as the test tool. A hundred teachers of various Government and non-Government schools in 2 districts of Andhra Pradesh, India, participated in the study.

 

Results: Higher scores on domain 1 indicate that teachers feel effective strategies to benefit students with disabilities should be implemented in schools. The results also indicate that most teachers are agreeable to the inclusion of students with disabilities in their classrooms. Significant difference in attitudes was observed, based on the teachers’ qualifications, teaching experience, gender, level of teaching and management.

 

Conclusion: The study concludes that there is a need for intervention to foster more positive attitudes among teachers, if the implementation of inclusive education is to succeed. It also has implications for the framing of laws and policies for children with hearing impairments.

Attitudes of Parents towards Children with Specific Learning Disabilities

CHANDRAMUKI, D
VENKATAKRISHNASHASTRY, I
VRANDA, M N
2012

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Purpose: This study explored parental attitudes towards children with specific learning disabilities.

 

Method: The study sample comprised parents of 60 children (30 boys and 30 girls) with Specific Learning Disability (SLD) who attend the Child and Adolescent Psychiatry Out-Patient Department at National Institute of Mental Health and Neurosciences, Bangalore, India. The attitudes of parents were assessed using the Parental Attitude Scale.

 

Results: The results revealed significant differences related to gender of the children on various domains of the scale.

 

Conclusion: The study highlights the need to educate parents to lower their expectations for children with specific learning disabilities, and to strengthen the social support network of these children’s families.

‘Welcome to My Life!’ Photovoice: Needs Assessment of, and by, Persons with Physical Disabilities in the Kumasi Metropolis, Ghana

TIJM, M M
CORNIELJE, H
EDUSEI, A K
2011

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Persons with physical disabilities face many architectural and social barriers to community participation. This research employed the ‘Photovoice’ method. The aim was to gain insight into the daily lives of persons with physical disabilities, and to assess their needs in the Kumasi metropolis. Participants in this study were trained and instructed to photograph their everyday activities, so as to document their struggles and concerns, to promote critical dialogue and to reach policymakers. Results indicated a number of concerns, such as poor accessibility to public toilets, transport and buildings, as well as a need for attitudinal change and equal opportunities. Other needs which were raised by theparticipants included economic empowerment, marketable vocational training, accident prevention, affordable and quality rehabilitation, and the establishment of emergency shelters. It was concluded that the most pressing needs of persons with disabilities were related to overall social, employment and accessibility issues. Finally, the ‘Photovoice’ methodology offered a suitable, structured, and participatory way to assess the needs of persons with disabilities. It gave this marginalised group a voice through photographs, and formed an excellent way of disseminating the findings of this study to the stakeholders involved.

On the outskirts of normality: Young adults with disabilities, their belonging and strategies

OLIN, Elisabeth
JANSSON, Bibbi Ringsby
2009

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During the last decades, the living conditions for young people with disabilities have changed dramatically in Sweden, as well as in other parts of theWestern world.The boundaries between what is considered normal as opposed to different have become less clear as a result of these changes. This has been followed by new problems regarding integration and changing patterns of marginalization. The aim of this study was to gain a deeper understanding of the ways in which young adults’ social identity is shaped by their dual belongings: to the category of individuals with disabilities as well as to mainstream society. In- depth interviews were carried out with 15 young adults with mental disabilities and mild intellectual disabilities occasionally combined with various forms of social problems. The analysis focused on the ways in which the young adults related to what they describe as normal and different as well as their strategies for navigating between them. The data was subsequently divided into three categories: Pragmatic Navigators, Critical Challengers, and Misunderstood Rebels, which reflect the ways in which the respondents describe themselves and the perspective they have developed to manage their existence.

Access to mainstream microfinance services for persons with disabilities : lessons learned from Uganda

BWIRE, Flavia Nakabuye
MUKASA, George
MERSLAND, Roy
2009

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This article reports from a pilot project in Uganda where the aim is to enable persons with disabilities to have access to mainstream microfinance services. Several lessons have already been learned: 1) entrepreneurs with disabilities are an untapped market opportunity for Micro Finance Institutions (MFIs); 2) to influence MFIs it is important to understand their business model and team up with key actors from the industry; 3) persons with disabilities are often misinformed about MFIs' terms and services and don't know how to tap these opportunities. Gradually a change in attitudes in MFIs and Disabled Peoples Organizations (DPOs) is observed. All MFIs participating in the project now report an increase in the number of clients with disabilities served. This is happening without the use of any economic incentives.

Gendered experiences : marriage and the stigma of leprosy

TRY, Leonie
2006

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Stigma is rife in many areas of health and healthcare and it has implicit impacts that are often overlooked. Due to the continued social construction of the stigma of leprosy, it is clear that a greater understanding is needed of how stigma is experienced. This study considers the experiences of marriage of those vulnerable to stigmatisation due to leprosy and more specifically identifies different experiences of leprosy-affected women and men and the possible implications.

Sex, disability and motherhood : access to sexuality for disabled mothers

O’TOOLE, Corbett Joan
2002

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There is limited research into the sexual lives of mothers, particularly mothers with disabilities. This article examines the barriers to sexuality facing mothers with disabilities. These barriers include: stereotypes that disabled mothers are not sexual, lack of resources for essential aspects of parenting, and difficulty in creating time for personal and private adult activities. Recommendations are presented based on the experiences of disabled mothers.

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