Meet Mary: A story about improving access to health services for persons with disabilities in South Sudan
Persons with disabilities are more likely to experience adverse socioeconomic barriers such as inequality and exclusion due to inaccessible physical environments and transportation, lack of assistive devices and technologies, non-adapted means of communication, gaps in service delivery, and discriminatory prejudice and stigma in society.[1]In South Sudan, disability is often stigmatized due to negative traditional beliefs, stereotypes, and ignorance. As a result, children and adults with disabilities are often neglected and isolated. Such negative attitudes contribute to discrimination against persons with disabilities, and Mary was one such person.
Mary is a 14-year-old girl who lives with her family in Nzara County, Western Equatoria State. Although she was born prematurely, Mary was a normal baby until she was two when she got an illness that caused her disability. When she was two years old, she could not walk and faced a lot of challenges because of that. “I used to crawl on the ground to be able to move, which caused painful wounds in my hands and feet,” said Mary. Mary did not have a wheelchair or any device to help her move, and many places did not have disability-accessible structures like ramps. This greatly affected her life.
“I was also not able to access social services such as the market, church, or health facility, and even if I was sick, I could not access treatment,” she said. Unfortunately, lack of access was not the only challenge that Mary experienced. The illness that caused her to have a disability was viewed negatively by many people in the community. She experienced stigmatization that led her to have low self-esteem and a sense of worth. “The worst was when children make fun of my condition, which makes me hate life,” said Mary.
Mary’s father, Martin, said, “I felt my child’s pain every day whenever I carried her to the hospital, and she softly asked, ‘Baba are you tired.?’ It would break my heart, but what could I do? The health facility buildings had no ramps making it difficult for persons with disabilities to access them.’’
Mary and her entire family faced social discrimination because of her disability. The family was viewed by the community as a burden and facing an unfortunate incident. The family members had very limited time to engage in productive activities such as farm work to produce food for the family because they had to care of Mary.
Gender Equality and Social Inclusion
World Vision prioritizes the Gender Equality and Social Inclusion (GESI) Approach that promotes equal and inclusive access, decision-making, participation, systems, and well-being of the most vulnerable; transforms systems, social norms, and relations to enable the most vulnerable to participate in and benefit equally from development interventions, builds individual and collective agency, resilience, and action and promotes the empowerment and well-being of vulnerable children, their families and communities.
The goal is to achieve sustained, transformational change at the individual, household, community, and societal levels so that all persons can enjoy fullness of life.[2]
The Prioritizing GESI in Health Interventions Project in Western Equatoria sought to reach vulnerable groups such as adolescent girls, persons with disabilities, people living in remote areas, those living in poverty, the elderly poor, people living with HIV/AIDS, refugees, and other vulnerable groups. The objectives were to integrate GESI into health, build the capacity of healthcare providers, ensure equal access to and use of health services for the vulnerable and marginalized population, and improve their health-seeking behaviour so they can access and obtain health services based on their needs.
Disability inclusion in programming and changing negative attitudes and beliefs towards disability is the most significant step to transforming the lives of persons with disabilities.
The project sought to improve the lives of the most vulnerable, like Mary. The project conducted awareness campaigns through radio, community dialogue sessions, open-air mass campaigns, and during routine outreaches in the community and health discussions at the health facilities on the rights of persons with disabilities in the communities and available services to them. The campaigns also challenged negative stereotypes and stigma against persons with disabilities. In addition, the project used the disability assessment tool (Washington Group Questions) that helped identify persons with disabilities and differentiate their needs. Staff was also trained on how to use these questions and how to provide services to persons with disabilities.
Before this initiative, many persons with disabilities had not been identified, and they had limited access to health facilities. Mary, being a person with a disability, and others were registered at the health facility and were invited to attend a dialogue for them to share the challenges they faced. One of the key issues mentioned by Mary was the lack of means of transport for persons with disabilities. She said, ‘‘we are tied at home because we do not have tricycles to facilitate our movements, and because of that, we feel isolated from society. We need tricycles.” Having heard Mary’s story and recommendations, as well as the others, the project procured tricycles and distributed them to persons with disabilities. To ease access to the health facility, World Vision had discussions with the County Health Department and agreed to modify health facility buildings by constructing ramps that aid access for persons with disabilities with their tricycles.
GESI Impact
The health awareness campaigns and assessments conducted at the health facility enabled the community to identify persons with disabilities, including Mary. Their needs were assessed, and solutions were provided. For example, Mary needed a tricycle to facilitate her movement, and World Vision provided one. She was stigmatized, and World Vision social workers provided her with psychosocial support and counseling that brought her hope.
She said, ‘‘I was stigmatized, but World Vision’s visits and support gave me a sense of worthiness that made me feel loved and cared for.’’ She added, ‘‘the tricycle completes my joy since I am now able to move freely.”
Her father shared, ‘‘Mary’s life and that of my family has returned to normal. My daughter felt loved and part of society because of World Vision’s intervention. The community members have stopped laughing at us. As a parent, I am able to do other productive life activities such as farming and business to earn a living for my family.”
Mary is happy because her mobility has improved and she can now go to school and participate in other social activities. Her parents no longer need to carry her everywhere because she has a tricycle. “That has freed me and her mother to do other things for the family. I am grateful to World Vision and the entire project for the job well done,’’ said Mary’s father.
Disability inclusion in programming and changing negative attitudes and beliefs towards disability is the most significant step to transforming the lives of persons with disabilities. The tricycles have greatly helped to improve mobility for Mary and other persons with disabilities in Yambio. It enables them to access social services such as health, school, market, and church, and participate in many social and economic affairs, which is important for their well-being.
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The Prioritizing GESI in Health Interventions Project is funded by the Health Pooled Fund, a consolidated fund from the British Government’s Foreign, Commonwealth and Development Office, the Government of Canada, the Swedish International Development and the United States Agency for International Development, European Union and the Global Alliance for Vaccines and Immunization. The development of this success story was part of the GESI Transform Project funded by World Vision U.S.
[2] World Vision GESi Approach and Theory of Change
Story by: Scovia Charles, World Vision South Sudan Communications Coordinator; Stephen Leonard Epiu, World Vision South Sudan Health, Nutrition, and Water, Sanitation and Hygiene Technical Manager; Leticia Nkonya, PhD., World Vision United States GESI Senior Technical Advisor; and Vicky Poni Mikaya, World Vision South Sudan GESI Coordinator