Fighting for Inclusion
Charity (pictured with her siblings) describes her family experience: “My father abandoned us. My mother always wanted my siblings and I to go to school, so that we become independent and are able to look after ourselves, but there were never any opportunities.” Charity and her siblings Margret and Kenneth live in South Sudan and were born blind. In South Sudan most children with disabilities don’t go to school, because special schools are scarce and mainstream school teachers lack the training to include kids with disabilities in their classrooms.
Last year, the three kids were finally admitted to a mainstream school. “The school did not have teachers that were trained in inclusive education, but then four teachers learned the skills from [an international charity operating in the area]. They were trained in Braille and sign language. In our class alone, there are three blind children and three with hearing problems.”
The South Sudanese Civil War broke out in 2013, after South Sudan gained independence from Sudan in 2011. Over 300,000 people are estimated to have been killed in the war and the high security risk and fighting have continued. People have been forced to abandon their homes and live in internally displaced people’s (IDP) camps, causing an ongoing humanitarian crisis.
Charity and her siblings didn’t live in an IDP camp but they still face challenges and barriers when it comes to attending school.
There are 2.25 million people internally displaced in South Sudan as well as two million refugees in neighbouring countries; together they make up a third of the whole population. This is a huge challenge for aid workers and humanitarian organisations. It is hard enough helping refugees without disabilities but what about men, women and children who have SEN and disabilities?
According to the World Health Organisation (WHO), 15 per cent of every population has a disability, which would suggest there are 250,000 people with disabilities in IDP camps in South Sudan. They often become victims of crime and violence. They are often excluded from health services, education, physical rehabilitation and humanitarian response efforts.
Accessibility, participating in the community and of course continuing inclusive education are factors that need to be considered for people with disabilities. Crisis situations hit vulnerable groups hardest; people with SEN and disabilities are often left behind because they are hidden as a result of stigma or their care givers simply not being able to cope with the situation.
Evidence from Light for the World’s programme in South Sudan, and other key organisations such as Handicap International and Save the Children, has consistently shown that the crisis has hit vulnerable groups including people with disabilities the hardest. In emergency situations, food distribution and provision of health and education services tend to focus on the needs of the general population being affected. Emergency responses often obscure the particular needs of specific groups of people such as those with SEN.
The lack of individual, community and institutional resilience is especially concerning and threatens to further destabilise public services. The effects of the crisis on the institutional development of South Sudan are producing a critical situation. For example, the education sector already had extremely high pre-emergency educational needs, experiencing low net-enrolment rates, a limited number of qualified teachers and limited availability of school facilities. In addition, children and teachers have been displaced and school premises have been occupied or destroyed; safe learning spaces are only rarely available.
Young people with disabilities have almost no chance of attending school, making friends and being part of the community. Given that exclusion is a global problem even in non-crisis situations, people with disabilities are often only considered as an afterthought. Of course, humanitarian aid organisations strive to include everyone in their programmes, but often, due to lack of experience or training, this isn’t always possible.
The percentage of children with disabilities is very high in the group of children who got lost during forced migration in South Sudan. They are the ones that suffer most from being excluded from school and the community.
In South Sudan, more than one million children are not in school out of a population of around 11.5 million people, of which 6.1 million need humanitarian assistance. Only around 27 per cent of the population over 15 years of age is literate. The percentage of children with special needs in school varies from 0.7 to 2.7 per cent, depending on the region.
The community based rehabilitation (CBR) approach makes education more accessible to children with disabilities in the IDP camps. This approach has proved to be effective in ensuring inclusion of people with disabilities in society. It comprises five components: education, health, social, empowerment and livelihood. The IDP camp projects I have been involved with in South Sudan have successfully adapted these components as outlined below.
Teachers are being trained in inclusive education and classroom management. Adapted teaching and learning materials are provided (such as slate and stylus and Braille paper) and parents are also trained as well as staff.
Assistive devices (such as white canes and tricycles) are provided. Training includes the use of Braille and sign language as well as instruction in activities of daily living, particularly for children with learning disabilities. Training in mobility and orientation to enable blind children to become familiar with their environments and to get around independently is also offered
The purpose of this is to foster social inclusion of people with disabilities by addressing attitudinal barriers to their education. Children with SEN and disabilities are usually discriminated against through cultural beliefs and negative attitudes; there is therefore an element of training community committees (community leaders) in disability and children with disabilities, as well informing them about the benefits of inclusive education. In addition, there are periodic awareness-raising sessions targeting the community members as a whole.
The projects provide comprehensive CBR training to selected field workers in the community. These CBR field workers deliver house-to-house services such as physical rehabilitation, activities of daily living, mobility and orientation, Braille and sign language to children with disabilities. Apart from direct services delivery, the CBR field workers in IDP camps also train parents and caregivers to provide physical rehabilitation to children with physical disabilities.
Children with disabilities are indirect beneficiaries of the livelihood component of the CBR approach in the project areas. By being empowered through provision of assistive devices, activities of daily living and mobility and orientation, they are less dependent on their parents or caregivers. Furthermore, children with disabilities get involved in household chores like their non-disabled peers. The parents or caregivers, in turn, can go about their businesses to provide for the families outside the IDP camps.
It is encouraging that some children like Charity, Margret and Kenneth are now getting the opportunity to learn and develop alongside their peers, but there is a very long way to go before inclusion becomes common in South Sudan. Mainstreaming disability and making sure that organisations are trained up in disability inclusion need to be the basis of all humanitarian efforts in our fight to leave no one behind.
- originally published in SEN Magazine in January 2018