Anusha Ederage's voice is clear and beautiful. Her dance is full of empathy and you can sense the meaning of the song even if you do not understand the words. When Anusha takes over the floor, it is as if everything around her disappears. Her presence in the dance and the song is complete.
Anusha's favorite subject in school was music, but when she talks about her school days, her energy suddenly disappears, which is otherwise very obvious.
- In that school I had no friends. I have friends in dance and vocational training. There were angry kids at school, but I did not care about them. The teachers did not get angry, they were kind and loving, she says without sounding too convincing. I did not like school, so I quit, she concludes awkwardly.
Anusha lives with her parents in Kalutra, which is about an hour and a half drive from the capital Colombo. She went to the same school as her older sister, Aruni Roshini Ederage. When the teachers and the principal thought Anusha was awkward - which they thought quite often - they went to her sister to complain.
Anusha had a hard time keeping up with the teaching. She scolded the teachers and quarreled with the other students who called her an idiot and joked about her. The school transferred the problems to Anusha and did not seem to do anything about the students' attitude problems.
Finally, the principal suggested that Anusha move to a school where the teachers were trained in special education. Anusha made great progress in the new school, where she learned to dance and perform, among other things.
No cure
Anusha has a developmental disorder and epilepsy.
- When she was two years old, she had a seizure. She had a high fever, shook, and urinated. We took her to the hospital, remembers Anusha's mother Piyaseeli Fernando.
Anusha's father Ariyapala was not home when it happened. He is a bricklayer and was currently working in Taiwan. The parents kept in touch by phone and letter.
-They did some tests on her brain and prescribed medicine, but they could not cure her. Previously, we had a son and daughter who died of the same type of seizure.
While Ariyapala sent money home to her family, Piyaseeli Fernando took care of the daughters with the help of her parents.
In Sri Lanka, the general perception is that people with developmental disabilities are unable to help at home or work. The right support means the difference between being isolated at home or, like Anusha, having rich free time and actively participating in the family's everyday life.
Support to live an independent life
For a few years now, Anusha and her family have been part of the organization PTOMHKD, which consists of parents and teachers who want to support people with developmental disabilities to live independent lives. Anusha is an enthusiastic participant in the vocational training arranged by PTOMHKD. She weaves doormats, packs wicks for the oil lamps that are lit in the temples and makes paper bags from used office paper. The organization also works with support groups for families.
Vocational training has given Anusha an opportunity that few people with developmental disabilities in Sri Lanka have – to earn their own money and to live an active life. Anusha makes her products at home and her older sister is there to help her if she gets stuck. But for the most part, Anusha manages on her own. She is very goal oriented.
- I want a job so I can leave in the morning and come back at five in the evening. I like to work. Some people do not like it, they are lazy, she says, and sounds happy that she is not.
With little opportunity to get a job and without the right to support in everyday life to be able to live independently, Anusha and others in the same situation are left out to charity from parents and relatives, non-profit organizations and the environment in general. A vulnerable life, where it is easy to be exploited.
- Many parents are desperate for their children's future. They say they do not even have time to take their last breath. If they had the opportunity to receive support, it would be fantastic for the parents, says Aruni Roshini.
She has been active in one of the support groups for relatives. Together, they try to find solutions to various problems they face. One challenge is the sale of the carpets and paper bags. Anusha does not earn enough to be financially independent, a problem she shares with her classmates.
Wants to become financially independent
Neeta Nalani, Anusha's vocational teacher who has come to visit today, talks for a while with the family. Before she leaves, Anusha happily asks if she has found a suitable man for her yet. Anusha is 23 years old and wants to get married - which worries her sister.
- Marriage is not a game, it is for life. I know how Anusha can behave. She does not understand what a married life means. Otherwise, I would also like her to get married.
Anusha's mother does not agree. She wants Anusha to marry and settle with her husband in their house. Ideally, the man should not have a disability so that he can take care of her.
- I know I will not live forever. When we die, no one can take care of her. We can not expect her sister to take care of her all her life, says Piyaseeli Fernando.
Aruni Roshini is of a different opinion. It is not a problem for her and her husband to take care of Anusha, she believes.
Before a possible suitor appears, Anusha continues to plan how she will become financially independent. She is a full-fledged businesswoman and does not miss the opportunity to market her business.
- You are welcome to contribute, I need to buy materials so I can make more carpets, she explains.
- Do you not want to buy my carpets? I can not give them away for free. I have worked hard with them!
Anusha argues convincingly for her goods, and now she no longer looks down at the ground. Satisfied, I buy the perfect souvenir from Sri Lanka.
