Breaking Barriers, Combining Capacity for Children with Disability in Indonesia
Comparisons between people with disabilities and those without should not exist. Every person is part of diversity, including people with disabilities. A child with a disability is not an object to be compared to another child. As part of human diversity, a child with a disability is an individual with the same rights and responsibilities as anyone else.
However, often the type of disability and limitations associated with a child or adult becomes the main focus. Visible physical differences become the centre of attention and often evoke pity. Other limitations lead many people to believe that people with disabilities need extra attention and are seen as an added burden. This perspective actually portrays those without disabilities as superior and, conversely, places children or adults with disabilities in an inferior position.
Without recognition of equality, those without disabilities will find it difficult to realise and understand that, in addition to limitations – which all humans possess – people with disabilities also have potential. This means that every child and adult with a disability has the right and duty to develop this potential to the fullest extent. The role of those without disabilities is not to be the superior ones who dispense aid and pity, but rather to use their own potential to collaborate with the potential of people with disabilities so that barriers can be overcome.
An inclusive environment can be created and sustained when every person, whether with or without a disability, has a perspective of equality. People with disabilities also need to develop a desire to overcome barriers and not have a self-image as inferior.
For example, a child with a disability should have the desire to access education. Parents can strive to ensure that their child can attend school. Teachers and other educators can ensure that the entire school environment is ready to provide equal learning opportunities for every child. A collaboration of potential between people with and without disabilities is the catalyst for an inclusive and discrimination-free environment.
Vulnerability of Children with Disabilities in Remote Villages
A child living in a low-income family faces specific challenges. These challenges can increase if the child is a girl. And they can increase further for a girl with disability. An inclusive environment feels like a distant hope due to these layered barriers. It is no wonder then that children with disabilities often go undetected and their conditions unnoticed because of these thick layers of barriers.
“For the condition of children with disabilities in our village, we have never conducted such a survey,” admitted a village head in West Manggarai Regency. The issue of disability itself has not been addressed due to the accumulation of various other problems in the village. Moreover, children with disabilities often go “unseen” for various reasons. Parents may hide the child’s existence because they consider it a shame. Or, because the child has mobility impairments, they may spend almost their entire life indoors, and many other reasons.
In one of Wahana Visi Indonesia’s assisted village located in East Manggarai Regency, the vulnerability of children with disabilities has risen to surface. Enjel, a 13-year-old girl with a disability, has never been to school. She stays at home every day. She actually wants to study, but is uncomfortable studying at school due to mobility impairments. The school also does not have a special program to become a more inclusive educational institution.
“Enjel really wants to go to school, but she told me, ‘Mom, I can’t walk. Can I study at home?’ So I bought books and pens to teach her to write,” said Siska, Enjel’s mother. As a mother, Siska fights for Enjel’s hope to continue learning, even if it means staying at home. With her own limited capacity, Siska teaches Enjel to write and draw. “Now she can, but she can’t read yet,” she said.
Enjel’s parents both work as farmers. “Every day I take care of the coffee and garden, and so does my wife. My wife is also a housewife,” said Ardi, Enjel’s father. Ardi once worked as a daily worker in different district. He tried to find a job that could improve the family’s economy. However, after Enjel was born, he no longer worked far from home and decided to become a farmer and take care of his family. “I want Enjel to be a smart child too,” Ardi hoped.
In this small family, Enjel tries to explore her potential. Enjel’s parents feel hopeful for their child. Enjel is not treated as a child who just sits at home without being given the opportunity to develop. She is cared for and educated in a family that fights for her empowerment. “I also help Mom wash the dishes. I like writing, drawing, and singing,” said Enjel with a smile.
Enjel and her family are one example of how a child with a disability is treated equally from home. However, the environment outside the family is not inclusive enough to support Enjel’s empowerment. Enjel, who has mobility impairments, has not found the most suitable and safe way to assist her mobility. If she wants to leave the house, her father has to carry her and climb the steep slippery stairs. These conditions are not very supportive of Enjel’s mobility.
Access to health services is also not easy. Enjel lives far from a hospital that has health services that meet her needs. In Ruteng City, East Manggarai, physiotherapy services for children with disabilities are available, but the distance and transportation costs from home to the city are not cheap.
“Here, people are ordinary with Enjel’s condition. We’re not ashamed either. Enjel also has friends who like to come to the house, there are two people. So with the people here, it’s been normal,” said Ardi. Enjel’s parents do not feel that there is any discrimination against their child. However, outside the home, Enjel still does not have an inclusive enough space for her to develop her potential to the fullest.
Sharpening Sensitivity to Issues Affecting Children with Disabilities
According to the 2018 Indonesian Basic Health Research (Riskesdas), there are up to two million children with disabilities in Indonesia. Nearly 30% of children with disabilities in Indonesia do not have access to education, and many of those who attend school receive inadequate educational services*. In addition to the education sector, children with disabilities also face difficulties accessing healthcare, participation, and especially protection.
Fulfilling the rights of children with disabilities is a long-term endeavor involving all stakeholders. However, this does not mean that this issue is distant from our daily lives. Becoming a non-disabled person who is more sensitive to children and adults with disabilities can start by understanding the types of disabilities as defined by Indonesia Law Number 8 of 2016 concerning Persons with Disabilities.
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Sensory Disabilities: This refers to impairments in one or more of the five senses, including visual, auditory, and/or speech impairments.
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Physical Disabilities: This refers to impaired motor function, such as paralysis, paraplegia, cerebral palsy (CP), resulting from amputation, stroke, leprosy, and others. This condition can be caused by illness, accident, or congenital disorders. People with physical disabilities exhibit abnormalities in body shape, limbs, or muscles, reduced function of bones, muscles, joints, or nerves.
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Intellectual Disabilities: This refers to a dysfunction or limitation, both intellectual and adaptive, that can be measured or observed, resulting in a reduced capacity to act in certain ways. People with intellectual disabilities have developmental disorders that are primarily characterized by a deterioration of concrete functions at each stage of development and contribute to all levels of intelligence. In addition to having limitations in intellectual function, people with these disabilities also have limitations in adaptive abilities, resulting in limitations in communication skills, self-care, home life, social skills, community involvement, health and safety, academics, and work skills.
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Mental Disabilities: This refers to impairments in thought, emotion, and behavior, including: (1) Psychosocial, such as schizophrenia, bipolar disorder, depression, anxiety, personality disorders, (2) Developmental disabilities that affect the ability to interact socially, such as autism and hyperactivity.
As we become more exposed to the types of disabilities, every non-disabled person can become more aware of the presence of people with disabilities around them. Once we become more aware, non-disabled people can start taking a stand to advocate for the equality of rights and responsibilities with people with disabilities. Non-disabled people must intentionally blend in with the lives of people with disabilities to better understand and have a perspective that favors equality. Building an inclusive environment cannot be done overnight, but rather starts with doing simple but meaningful new habits to empower people with disabilities.
Children with Disabilities: A Focus for Wahana Visi Indonesia
Children with disabilities are among the most vulnerable groups in society. Wahana Visi Indonesia, as a humanitarian organization focused on children, consistently identifies children with disabilities in its program areas. This is not easy, as it requires a census or special approach involving families and village governments. However, quantitative and qualitative data on children with disabilities in WVI’s assisted villages can be recorded through the Child Sponsorship program.
Through this program, WVI is present and can learn about the real conditions of children with disabilities in villages. WVI strives to ensure that every child, especially the most vulnerable, can be reached and experience change. WVI supports children with disabilities and their families so that they can regain hope. The WVI operational office in Manggarai has connected children with disabilities in several assisted villages with physiotherapist. In meetings between parents and physiotherapists, knowledge transfer occurs. Parents' capacity to understand their child's disability increases, and they also receive training in physiotherapy practices that can be done at home.
In addition, the WVI operational office in Lombok is developing a program approach that mainstreams issues related to children with disabilities. This initiative is made possible through a good partnership between WVI as a humanitarian agency, local partners providing physiotherapy services in Lombok, and village governments. The combination of potential possessed by various parties can trigger or accelerate the development of the potential of people with disabilities.
Wahana Visi Indonesia believes that every child, with all their potential and challenges, has the right to feel hopeful. You can play a role in realizing hope for children in Indonesia. By getting involved, you can become a meaningful figure for every child, because you might be the one who becomes a channel of hope for a child who is most vulnerable. Support a child in Indonesia now, visit wahanavisi.org/chosen.
Author: Mariana Kurniawati (Communication Executive)
