Bared by Disability: the untold story of neglected disabled persons in S. Sudan
By Moses Gum Degur
People living with disabilities in South Sudan are raising a serious concern that they have been neglected and bared from accessing office and health services at buildings, towers, planes and churches due to the nature of their disabilities as they cannot reach those institutions placed upstairs.
In an exclusive interview with the Juba Monitor, persons leaving with disabilities claimed that accessibility to various agencies, located in government buildings, and hotels are blocked from them.
A 30 year old, Sora Rengita, told Juba Monitor that she has been facing extreme hardships whenever she tried to get assistant from authorities concerned with sustainability of her life.
“I have been struggling to get a better life, but accessing basic necessities like food and water has been difficult” and “Physical limitations to enter institutions to seek assistance makes our situations even more challenging,” she said.
According to her, building houses without consideration to persons leaving with disability was dubbed as “avoiding tactics”. In addition to all these difficulties, some people whom we hope could give us help are unreachable, simply because of limited chances of accessing their offices. She further stressed that every official working in upstairs offices does not recognize them and it’s a sign of discrimination.
Persons leaving with disability have the right to meet their leaders like any other able bodies.
“To us (persons leaving with disability), disability does not mean inability, everyone can contribute in his/her own way to community development and that, it is necessary to offer them services,” she said.
The 30 year old Rengita appealed to the government to help persons leaving with disabilities by offering them needed services through capacity building and life skills training in order to support themselves and children.
South Sudan has not yet rectified the United Nations Convention on the Rights of Persons with Disabilities to support Disability Policy.
A 23 year old, Abraham Bhang a student in Bridge Secondary School, a person leaving with disability himself since childhood as a result of polio said.
“I started becoming paralyzed with polio at the age of fourteen. Since that time, I have been going to school amidst challenges. I have been struggling to support myself and my education, that is the reason why my school goes off and on”, Bhang said.
“It is not that when you are disabled, you lose an opportunity. That’s a great lie. For my case I am paralyzed but my mind is not. Disability is not the end of life and vulnerability. Still one has to struggle for life”.
Abraham Bhang 23, a disabled student next to his resident at Thongpiny, Juba after sharing his experiences upon return from school, (Photo by Moses Gum)
The 23 year old, said he had been crawling going to school up to class five before receiving help from the International Committee of the Red Cross (ICRC) ,while in Yei River State before the war broke up.
“I started my school with a lot of struggle since Primary level. I have been crawling going to school for quite a long time. After that ICRC gave me a wheel chair for free and l have been very appreciative for that,” he said. “When the crisis started, I was schooling in Yei and got stranded. Everybody deserted the school and ran away for refuge and I was left behind.”
Bhang recounted to our reporter that he approached the national Ministry of Health to help him with a motorbike to help him navigate the dangers on his way to school. According to him the wheelchair he was using was tiresome.
“I was looking for a motorbike for (person leaving with disability) from the Ministry of Health. I wanted this purposely to use to rush to school because the wheelchair could not cross water and high places,” Bhang said. “I resisted for two days until the third day when one of the officials came and l was finally told that wheelchairs for disable were over and needed to be requested”.
Bhang is a very determined person, confident and focused. When asked how he got out of Yei River State to Juba during the crisis, he said a good Samaritan helped him. “I was not having fare and moving on land was very difficult. It was by surprised when someone faithfully gave me a ticket (Plane) and finally l traveled to Juba”.
However, he was faced with another challenge when boarding the plane in Yei Airstrip which is located five miles out of the town. How to board the plane with his condition? The plane did not have any provisions for a person leaving with disability to board. A friend came by and supported him to the ladder and inside the plane.
Francis Aguek Madut, expressed sadness that the endless and prolonged conflict in the country has negatively affected service delivery to persons with disabilities.
“Many vulnerable groups are highly affected by this crisis. Persons with Disability are not getting any help with most of them neglected and denied effective services. This made them live below the normal standard in the country,” Aguek said adding that “Part of these people living with disabilities have contributed a lot in the liberation of South Sudan and therefore need to be taken with equal treatment without being discriminated.”
He argued that persons with disability are neglected due to lack of access to executive offices and public places. “There is no doubt that disables are neglected. If they are not neglected then offices should not just be put upstairs where persons with disability could not reach,” said Aguek.
Mr. Francis Aguek Madut, Chairperson of National Disabled Organization, South Sudan accessing a building at Lukak’s tower in Juba (courtesy of Moses Gum), Juba:
According to Aguek there should be legislation or policies that were not discriminatory to persons with disability.
Aguek is perusing his bachelor Degree in Law at Kenyata University in Kenya. He is advocating for the rights of persons with disability.
According to Convention on the Rights of People with Disabilities article (9) States that Parties shall take appropriate measures to ensure that persons with disabilities have access, on an equal basis with others, to the physical environment, to transportation, information and communications technologies and systems to other facilities services open or provided to the public, both in urban and in rural areas.
“These measures, which shall include the identification and elimination of obstacles and barriers to accessibility, shall apply inter alia: including Buildings, roads, transportation and other indoor and outdoor facilities, like schools, housing, medical facilities and workplaces” it said.
Article (9) subsection (2) of CRPD, States that all Parties shall also take appropriate measures: to develop, promulgate and monitor the implementation of minimum standards and guidelines for the accessibility of facilities and services open or provided to the public; ensure that private entities that offer facilities and services which are open or provided to the public take into account all aspects of accessibility for persons with disabilities;
As well as to provide forms of live assistance and intermediaries, including facilitating accessibility to buildings and other facilities open to the public.