A Voice for the Unheard

A Disabled People’s Organization in Wanathavilluwa is working hard to build a voice for children, youth, and adults with disability.

Over the last few years, Sithara has been struggling to convey a message. A truth she had learnt from her own experiences as a mother of four children with disabilities. She began with her village of residence, Raalmaduwa situated in Wanathawilluwa, Puttalam, in the north western province of Sri Lanka. Initially no one listened to her. But her work as a Volunteer for the project for Social Inclusion of People with Disabilities in Sri Lanka through Community Based Rehabilitation strengthened her voice and gradually the confidence of other villagers in what she had to say. “My dream is to see a world where children with disabilities have access to education and vocational training and are able to become as self-sufficient as they possibly could,” she says.

Sithara says that one of the biggest problems that she sees in society is parents giving up on children with disability early in life. “They start doing everything on their children’s behalf and they continue to do personal tasks until they are too old and weak to support their children. But what we need to do instead is to teach them skills and make them independent.” She says that her 10-year-old child who has multiple disabilities is able to do simple personal tasks. “We will not be with them their entire lives and this is why we need to teach them and prepare them to take care of themselves as much as possible” she adds.Following years of advocating for a special-needs unit for children with disability, she says the efforts of the Wanathavilluwa Disabled People’s

Organization paid-off a few months ago with the local authorities setting up a special-needs unit at the Bandaranaike Maha Vidyalaya in their village. The unit now houses over a dozen children with disabilities that come in daily to engage in art, writing letters, making pictures etc.

Sithara is now advocating with the support of VOICE and the local authorities to set up a vocational training institute for youth with disabilities. The aim is to teach skills that will enable youth with disabilities to generate an income of their own and make them independent. While all youth with disabilities may not have the same capacity to learn and train in a skill, it could give them the chance to develop a skill that will help them sustain themselves in the future.

Last year, the Disabled People’s Organization (DPO) and Self-Help Groups (SHG) in Wanthavilluwa banded together on an advocacy campaign to mark world disability day. This included the handing over of letters of request to important government bodies in the Division. The campaign led to visible changes in the physical structure of some key offices in the area and resulted in some months later with ramps being constructed in a few buildings, thereby enabling wheelchair-bound persons to access critical services offered at these offices. It is evident that the efforts of the DPO have made an impact. Emboldened by these successes the groups have also grown in numbers.

The implementation of the Community Based Rehabilitation (CBR) project by VOICE involved a Key Informant Methodology (KIM) survey. Accordingly, Key Informants visited households and identified children and people with disabilities and informed them about the KIM camps that were to be held in the village with visiting specialized doctors. In many instances, they were also provided physical assistance and transport to arrive at the KIM Camps. “The identification of children, youth and adults with disabilities enabled the formation of SHG collectives in their respective villages,” says Sameera Rajakaruna, Community Mobilizer for Wanathawilluwa Division. The awareness and training provided on CBR enabled them to further capacitate themselves and gain a broader understanding of the government CBR program, leading to a more positive outlook towards the concept of Disabled People’s Organizations (DPO). In setting up SHGs at the village level they became further aware of the aspect of human rights. This has led to the collection of more information and increased discussions at the DPO level, adds Rajakaruna. Monthly meetings are held by SHGs and members too have increased. From 57 in early 2019, the number of SHG members has now more than doubled to 137.

The DPO has been able to identify problems faced by those with disabilities and have in turn presented them to the relevant social services officers, divisional secretary, and district DPO. The Open mic session in which Sithara participated was a key event and included two other members from the DPO. It was a rare opportunity for the group to share issues faced by children, youth, and adults in their Division and discuss them at a national level forum.

In addition, the opportunity to meet relevant doctors, receive much needed medical advice, and obtain further specific prescribed treatments has also gone a long way in changing the attitudes of people towards those with disabilities. Children who were hidden away inside their homes due to attitudes such as shame and fear have been brought out of their homes. “Through social inclusion interventions these children are now receiving opportunities to socialize,” he adds. These opportunities include becoming members of the village children’s club.

Sithara continues to share the knowledge and training she received through VOICE with regular visits to families with children or adults with disabilities. She checks on whether they are following the required exercises, has gone for their regular medical check-ups, if they have picked up their disability allowance and if they are facing any particular problems. She is also promoting socialization for children because this will help them to be accepted by the community and build supportive social relationships.

“At the end of the day, the most important thing is to help them live life to the fullest possible,” she says.