Photo courtesy of the Sunera Foundation
Not so long ago, to be a person with disabilities meant stigma, exclusion and isolation because people are disabled by society and not just by their bodies. But as the number of disabled people keeps rising and their visibility increases, many governments and organisations are making concerted efforts to make the world more accessible to the disabled; it is now seen as a human rights issue.
A disability is any condition of the body or mind that makes it more difficult for the person to do certain activities and interact with society. People with disabilities are among the most marginalised groups in the world. They have poorer health outcomes, lower education achievements, less economic participation and higher rates of poverty than people without disabilities, according to the WHO.
Over one billion people around the world live with some form of disability. This amounts to 15 percent of the world’s population and rates are increasing due to ageing populations, medical advances that prolong life and rising chronic health conditions such as heart disease, diabetes and cancer.
Lower income countries have a greater prevalence of disabled than higher income countries. Disability is more common among women, older people and children and adults who are poor.
According to the National Census of 2012, Sri Lanka has a disability prevalence rate of 8.7 percent, which means that there are 1.6 million Sri Lankans over five years of age who have a disability due to illness, injuries from traffic accidents, violence, birth defects, malnutrition and communicable diseases such as HIV/AIDS, all of which are on the increase. A brutal 26 year civil war has left thousands of fighters and civilians with debilitating injuries.
In Sri Lanka, the disabled bear the brunt of superstitious beliefs that stigmatise them and their families. A disabled person seen at the start of a journey brings bad luck; disabled people are helpless and of no use to the community. There is a reluctance to make changes to a workplace or to children’s play areas or to make transport accessible. These barriers keep people with disabilities out of social life and development.
“Any human being can have a change in their health condition and so any human being can have disability. It is not a characteristic of a person which is how it was defined in the past.
“Defined in this way, disability is a part of being human. It is a part of human diversity. It is part of us. Disability does not make us different as human beings. As human beings, we all have the same feelings, emotions, needs and aspirations. We all have the same rights and responsibilities and should have the same opportunities and the same choices that all other people have,” stated a 2019 Disability Policy Brief by Padmani Mendis and Binendri Perera.
Despite having a National Policy on Disability since 2003, ratifying the UN Convention on the Rights of Persons with Disabilities in 2016 and approving a National Action Plan on Disability in 2014, “No meaningful steps have been taken to date to alleviate disadvantage and distress and improve the quality of life of persons with disabilities in the country through the achievement of their rights,” the Disability Policy Brief said.
Children are more disadvantaged due to disability since the school system is not equipped to provide educational facilities for the disabled.
In 2016, UNICEF Sri Lanka commissioned a report that found that 23.5 percent of children aged 5-14 with disabilities were excluded from mainstream education. Around 55.4 percent of the disabled population aged 15-19 and 86 percent of the disabled population aged 20-24 were not engaged in any educational activity or vocational training.
There are several organisations that are assisting disabled people and trying to improve their lives including the CFS Prithipura Home, the Chitra Lane School and the Sunera Foundation.
The Prithipura Home houses adults with physical and mental disabilities from childhood to adulthood, offering a place for residents who need special care and attention due to mental, physical, social or economic reasons. The residents are taught basic reading and writing skills, crafts and music based on their abilities as well as receiving medical treatment and physiotherapy. The Chitra Lane School’s Children’s Resource Centre provides a range of services including testing and evaluations, education, speech and language development, physiotherapy, medical clinics, parent counseling and vocational and life skills for young adults with special needs. The Sunera Foundation concentrates on drama and art to gain visibility and social integration for the disabled through workshops and performances that serve as a form of therapy.
“People who have injuries due to accidents or the war are not stigmatised but those who are born with disabilities are shunned by society,” said founder of the Sunera Foundation, Sunethra Bandaranaike. “They have rights just like all other citizens but these rights are not exercised or recognised.”
“The bottom line is that we have to come together to raise our voices about lack of rights for people in different situations. No one has raised their voice for these people who have no voice; they have fallen by the wayside,” pointed out Ms. Bandaranaike.
The Foundation uses craft work, painting, physical exercise and singing for stimulating mental and physical development and fostering self-confidence through performance. On stage people with disabilities can become animals, birds or trees, delighted with applause and overcoming any shyness. This transformation requires patience, care and energy. Sunera’s performers have gone to many countries around the world, proving that disability is not a drawback when it comes to expressing creativity and confidence.
The Sunera Foundation’s workshops have brought together the disabled from the North and South. Tamils and Muslims born with disabilities have rehearsed and performed with Sinhalese soldiers disabled by the war and formed enduring friendships. With funds for reconciliation work, workshops were held in Jaffna and Anuradhapura where participants were able to learn about each other’s cultures and traditions, dispelling stereotypes and misconceptions.
The Sunera Foundation has produced a book about its story called “Wings”, which is available at bookshops. Here are some photographs from the book: