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In 2015, Humanity & Inclusion HI began the project: “Empowering persons with disabilities to contribute to equal access to basic social services and local policymaking processes in under-resourced areas of Ayeyarwady and Mandalay”. The project supported Disabled Peoples Organizations and other civil society groups to participate in the development of inclusive regional policies and programmes, and to promote good practices contributing to greater access to services for persons with disabilities. An aim was also to document, publish and disseminate these good practices throughout Myanmar, increasing awareness and understanding in order to sensitise people to disability inclusion and influence policy change. Rather than focusing on what is not working, this report seeks to shift attention to what has worked locally and how it could be replicated in other parts of the country, providing constructive, practical recommendations to decision-makers, service providers and other community groups in Myanmar. The report is related to two projects. The second is “Advocacy for Change: Fostering protection and rights of men and women with disabilities in Myanmar”. 

There are global recommendations. There are seven good practices:

• Related to education:  Case Study I: Promoting Inclusion of children with disabilities in Middle Schools of Ayartaw. Case Study II: How the development of the teacher training promotes inclusion of all children in education
• Related to economic life: Case Study III: How partnerships between private companies and organizations of people with disabilities can improve access to employment and vocational training
• Related to social/community life: Case Study IV: Giving the Myanmar Deaf Community access to information.  Case Study V: How parental advocacy can make a difference
• Related to political life: Case Study VI: Community advocacy in obtaining the National Registration Card. Case Study VII: Supporting people with disabilities to participate in Myanmar elections

Persons living with visual impairments form a major group of people with various types of impairments in African countries. Little has been reported about the means and forms of information they seek to cope with their environment, and studies in Nigeria specifically, have not explored health information-seeking behaviour of visually impaired persons. This paper documents the health information-seeking behaviour of visually impaired persons (VIPs) in Ibadan Metropolis. A standardized questionnaire was administered to 200 VIPs sampled from two health facilities in Ibadan Metropolis. Most (66%) of the VIPs were partially sighted, 43% reported health issues as their most worrying challenge, while 20% reportedly had daily unmet health information needs. VIPs accessed information about medication for ailments from friends (45%), adopted herbal medication (50.5%) and /or indulged in selfmedication (21%). They reportedly had worse health (9.5%) status, while 4.5% reportedly remained worse off emotionally. The study concludes that VIPs considered health challenges and limited access to health information as their major concerns. Care for visually impaired persons should be incorporated in the primary healthcare routine and school health curriculum. Media programmes are also required to sensitise the general public about health information needs of VIPs.

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

The last decade has seen increased attention to the treatment of people with albinism in several African countries, particularly the peril they find themselves in due to stigma and superstition. As a way of countering these misconceptions, there has been educative activism from legal, medical as well as religious perspectives. In this paper, we draw upon a different discourse- literary representation- arguing that in selected African novels, the authors employ a variety of strategies that counter harmful stereotypes about albinism, and in the process act as literary interventions that enable an appreciation of the person behind the skin condition. Drawing from insights in Literary Disability Studies, the discussion examines the representation of albinism in four African novels: Petina Gappah’s The Book of Memory (2015), Meg Vandermerwe’s Zebra Crossing (2013), Unathi Magubeni’s Nwelezelanga: The Star Child (2016), and Jenny Robson’s Because Pula Means Rain (2000), and highlights the way albinism is presented as bodily condition that intersects with other experiences on the continent, including indigenous epistemologies, gender, sexuality and family relationships. 

Disability and the Global South, 2018, Vol.5, No. 2

Research summaries, case studies and process documentation from “Inclusive Protection and Empowerment Project for Children with Disabilities (IPEP)” are presented.  The aim of the project was to build resilience and capacity among children with disabilities and to create a violence-free community for them. The project ran in five districts of Bangladesh i.e. Sylhet, Dhaka, Barishal, Rangpur and Gaibandha from 2014- 2017. 

The research topics were:

• Understanding the Vulnerabilities of Children with Disabilities Living in both Government-run and Private Residential Institutions
• The Vulnerabilities of Children with Disabilities from Low-income Households
• Social Protection Schemes Relevant to Children with Disabilities and their Families 

This publication provides introductory chapters from two activists who work to create better opportunities for people with disabilities in Nigeria and India. Subsequently, the challenges that organisations worldwide have encountered whilst improving the access to and knowledge of sexual and reproductive health and rights for people with disabilities are presented. Ways in which they managed to find solutions and the results achieved are reviewed. Some cases show the importance of a more personal approach whilst others emphasise the advantage of changing systems and policies. Different regions, types of disabilities and various SRHR-topics are reflected in these stories. All cases provide lessons learnt that contribute to a set of recommendations for improved responses. The closing chapter highlights the challenges, solutions, and ambitions that are presented and lead up to a concise overview of recommendations.  

Good practice examples include:

A shift in SRH programming (Nepal)

Breaking Barriers with performance art (Kenya)

Her Body, Her Rights (Ethiopia)

People with disabilities leading the way (Israel Family Planning Association)

Best Wishes for safe motherhood (Nepal)

It’s my body! (Bangladesh)

Calling a spade a spade (Netherlands)

Four joining forces (Colombia)

Change agents with a disability (Zimbabwe)

Tito’s privacy and rights (Argentina)

Sign language for service providers (Kenya)

Ethiopian disabled women’s experiences of intimacy, pregnancy and motherhood are reported. Qualitative, in-depth, and semi-structured interviews along with personal observations were used to explore the full experiences of participants. Interview data revealed that mothers experienced significant challenges with regard to accessibility of health centers, physician’s lack of knowledge about and problematic attitudes toward them and more general societal prejudices towards individuals with disability. The 13 participants were employed women with physical or visual disabilities, and the interviewees were from the Addis Ababa metropolitan area, Ethiopia.

Disability & Society, 32:10, 1510-1533

DOI: 10.1080/09687599.2017.1361385

Purpose: Since families are perceived to be active agents in the early intervention programmes of young children with disabilities, professionals ought to treat parents as equal partners and keep them informed and involved in various aspects of the intervention.  This study aimed to explore the areas in which parent empowerment is currently being facilitated in the early intervention centres for children with hearing loss.

Method: A qualitative research with conversational analysis was the approach used. Focus group discussions with the two primary stakeholders, namely parents and special educators, were held separately at five sites in Mumbai, to gather their views on the existing areas of empowerment. It was also decided to explore the felt needs of parents in this regard. Person triangulation was used to ascertain the credibility of the data.

Results: Conversational analysis yielded 4 themes with respect to parents: Parental knowledge, involvement, support and needs. 

Conclusion and Implications: The study highlighted the gaps in parent empowerment in the programmes undertaken by early intervention centres.  A recommendation is made to develop a common framework for empowering parents. It is envisaged that such a framework will bridge the gap between what currently exists for parents, their felt needs, and current global practices.  This framework could also assist in measuring family empowerment outcomes.

Purpose: To analyse clinical outcomes in terms of functional changes in children with Autism Spectrum Disorder (ASD), before and after receiving a multidisciplinary developmental intervention programme.

Methods: Structured goal-oriented multidisciplinary intervention, individualised to each child, was implemented through 5 child development centres in Mumbai, India, in 2014-2015. Secondary data analysis of 38 children diagnosed with ASD, in the age group of 2.1 - 6.1 years, was conducted. All children received occupational therapy and speech therapy, and parental counselling was also done. The average number of intervention sessions were 48-72 for occupational therapy (twice or thrice a week), 24-48 for speech therapy (once or twice a week) and 5-6 for parental counselling (once a month). Childhood Autism Rating Scale (CARS) and Vineland Social Maturity Scale (VSMS) were used for assessment, before and after intervention.

Results: Mean positive difference in CARS total scores through paired t-test was 4.18 (p < 0.0001). Significant positive changes in functional ability were observed in most of the sub-scales (relating to people; object use; visual response; verbal and non-verbal communication; taste, smell and touch response and use; level and consistency of intellectual response and general impression). Paired t-test also showed significant positive changes on all VSMS sub-scales, exceptSocialisation.

Conclusions: The model used in this multidisciplinary intervention, and adherence to its protocols, has the potential to improve functional ability (or the child’s adaptation to his/her condition) in children with ASD, in a region with limited awareness of developmental disabilities.

Limitations: Separate effects of factors outside the intervention could not be tested due to inadequate sample sizes for sub-analyses. Results also need to be validated by tests that do not depend on parental reporting (e.g., CARS and VSMS) but assess the performance of the child instead.

Background: Parenting children with learning disabilities requires a high level of knowledge and access to resources, information and services. In developing countries, however, these resources and services are not always available. Parents in Namibia, a developing country, therefore face challenges addressing children’s learning and other developmental disabilities, including challenges related to preventative and supportive interventions.

Objective: This research focuses on challenges faced by parents as they parent children with learning disabilities in Opuwo, Namibia.

Method: In-depth interviews were conducted with eight parents regarding the challenges they face in parenting their children with learning disabilities. Thematic analysis enabled the researchers to identify, analyse and report on themes that emerged from the qualitative interview data.

Results: Analysis of the interviews indicated that some participants had only a vague understanding of learning disabilities, as they did not have access to essential knowledge about this phenomenon. They also lacked an awareness of the availability of programmes, services and policies meant to benefit their children with learning disabilities. Participants voiced that they, their children with learning disabilities and community members have stereotypes and prejudices regarding learning disabilities. In this study, most of the children with learning disabilities were raised by single, unemployed parents who seemed to have access to less support from external sources than married couples parenting children with learning disabilities. These single parents are usually not married and because of lack of financial support from the other parent, the majority of them indicated that they struggle to meet the financial and material needs of their children.

Conclusion: The researchers concluded that the participants in this study experience a range of challenges in parenting their children with learning disabilities. The main challenges emanate from financial instability, as well as lack of knowledge regarding services and programmes for children with learning disabilities. This lack of knowledge on the part of participants could indicate poor policy education by policy implementers at grass-roots level.