This is not a story you hear every day, or people you speak of often. But, they are a group of people who needs the empathy of society, to understand them, to understand their children that society has branded as disabled. We talk about children with disabilities and we often forget those who care for them. This is their story.
The Sunera Foundation is Sri Lanka’s leading non-profit organisation that works with young people with disability. Sunera provides drama therapy along with music, speech and art therapy at their weekly workshops, to participants and hold an annual drama festival titled, Samanalayaya, where these young men and women show off their colours despite their disabilities. Embracing the parents who toil hard to take care of their children, to bring them to Sunera workshops, to ensure that their children get the best possible care, Sunera Foundation decided to hold a theatre performance with parents of the workshop participants.
Society
These people have spent their past decade or so worrying about their child or children, branded disabled by society. They are exhausted in their struggle to better the lives of their children, to do their best to find the means to care for the children when the parents are no more.
Leaving behind those worries, fears and concerns, these parents of the Sunera participants took to the stage to sing, dance and act, sending a unique message to the audience.
When they got on stage, they didn’t look like amateurs. They walked with pride, spoke with confidence. Dilrukshi Wickremasinghe, a mother of two said, with age, she had started to doubt herself, on the possibility of performing on stage, to entertain an audience. “I have performed on stage at school, but that was about 40 years ago. But when practising for this show I realised that not only about acting, I started doubting myself on other matters as well. This was an eye-opener.”
They seemed to have stepped into a past that was forgotten, exploring the aspects of their lives they chose to ignore due to the battles in life. “We learn various things at various stages in life; at school, as young adults, as married people, as parents. We learnt the art of theatre much later but this brought out the young energy in us that we had forgotten about,” Wickremasinghe said. “We are a group that undergoes tremendous pressure daily due to the situation we are in. And, we wanted to address it in the play. We want other parents who have children with disabilities to know that they are not alone,” she said.
In the play, there is a message to the parents too; if they have a child without any medically recongnised disabilities, to raise them knowing what compassion for others is, so that they will be there for their differently-abled siblings if or when the need arises. Academic excellence is important, but learning to live compassionately is more important.
Wickremasinghe spoke with experience. There is a trend in our culture that the moment parents realise that a child is differently abled, they put all their energy to give the other child the best education, possible. But, it’s not enough. “I enrolled my older child to Dhamma School the week I found out that my second child is disabled. I made sure both of them share their experiences together, and the older child sees what we go through to raise them both. Now, my daughter is a Special Education Teacher and supports many others like her younger sister.”
With no state sponsored welfare system to help people with disabilities, it is evident that they are looking for ways to ease their daily struggles, to ensure that their disabled child is properly looked after in future. But on stage, they have learnt to laugh out loud again, allow themselves to get excited, and make mistakes. They are being trained for the show by Sunera trainers who work with their children every week.
Echoing Wickremasinghe, Gamini Liyanage said, he lives under a lot of pressure. “I have a hyperactive 15 year old, so there are times when life gets tough. My wife and I worry about their future when we are gone. I never thought it’d happen, but acting helps me relieve that stress.”
He said, the struggle is not looking after their children at home. The social stigma their children face, drain out the parents too, probably much more than the children who are disabled. “We see our children mistreated in society, they are being bullied, and sometimes nobody even offers a seat in the bus when they travel, not even the seats allocated to people with disabilities. We live with that pain,” he said, adding that despite all that, the acting exercise has been very effective. “I’ve lost all the pains I had all over my body and I feel fit enough to face anybody, any social stigma now.”
Performances
These parents developed a new habit of bringing their children to their drama practices as well as for the night of the show. They watched their parents’ performances with the pride of experts, having performed at Samanalayaya Drama Festivals.
Another participant in the drama, Anusha Nishanthi, said, there is unity in this group of parents, and it gives strength to her mentally, to face her problems. “We are all in the same situation and this has become a good support system so as not to let us feel depressed. What we should focus is not to make the child’s disability a problem, either to the family or society. That’s the message we are trying to give. My son is 21, and he travels by himself in the bus. After the workshop finishes, he calls me to let me know that he got into a bus, and he would take money from his wallet and buy the ticket too. My next aim is to train him to do grocery shopping on his own. I don’t want him to learn to read and write, but to survive in this world when I’m gone without begging help from others.”
Standing strong behind Sunera Foundation and their each and every event is its Chairperson Sunethra Bandaranaike. Explaining the concept and the initiation of the event, she said; “Our society is such that when a family has a disabled child or children, it is the mother who suffers the most. The responsibility is entirely on the mother to bring up that child and look after the child. The mothers of course give a lot of love and care to the children but additionally, they have to look after the other children in the family, as well. The mother takes the brunt of such a situation. Therefore, mothers are always under stress. They do not know what the future of the child would be when they are no more. They continue to live in that world. For nearly 20 years, we have been working to enhance the lives of the disabled young people, and there have been very good results. But, what about the mothers? And the fathers? So we came up with this idea fully supported by the mothers through theatre. Now they get a lot of joy doing that!”
She commended Sunera trainers who took extra effort to train these parents. “Our trainers are very good at helping them. They can shake off their shyness, sadness and anxieties. That is our objective in having this show. These parents are probably very good at drama except that they have never discovered it because they have never had the opportunity. Here it opens the door for them in a very private space to practice, joke and laugh, enjoying the company of each other. We hope we can carry this to all the 36 workshops in the country over a period of time,” she said. Only parents from Maharagama, Dehiwala and Panadura workshops took part in this event which Sunera Foundation intends to treat as a pilot project, with many more to come in the future.
Sunera trainers however, said, they underwent different experiences training parents to act, sing and dance. “It was more difficult than training participants,” Sunera trainer Sandun Bandara said. “We had to take into consideration people with arthritis, heart conditions, and they limited their performances.” They doubted themselves; it has been decades since they’ve tried something like this, if at all. Cultural factors had to be encountered, when these parents felt shy, and afraid to perform before an audience, uncertain of the responses they’d receive from their families. “But finally, together, we overcame them all,” he added. This will be a good message to the society that looks at children with disabilities as someone strange, and their parents as the creator of that someone strange.
