25/12/2016

My dad and I are in Sri Lanka for 2 weeks. i havent been here since 2007, and so much has changed. After the war ended, it seems as though the island has taken a new breath, it’s growing and improving. I let the hotel, our car, and the special treatment we receive fool me into thinking that things are getting better. I was blinded by the buffets, the unreal views and the comforts i am accustomed to. 

A couple of months back, my dad read an article online about a woman raising an autistic adult in a village in Sri Lanka. He called and asked if he could visit. On the 23rd December we left our fancy hotel and drove to this village. I still had chlorine in my hair and my iPhone at hand. We got to a point in the road where there was no road, it was just dirt and holes. The conditions were dire, but everyone who saw us smiled, and the children waved. People were getting on with their every day chores; barefoot, in 35C degrees, in dirt. The stray dogs are everywhere. 

We got to the road leading up to the house and realised no vehicle could go up that road. We had to park and go by foot. We went up a footpath on a hill, miss a step and you’d probably break something. I got anxious, i kept thinking that this is their way home, this is their road to and from their house. The nearest village was about a half hour walk. So they would have to carry everything up and down this path, every day. 

When we got to the top we saw their house. 

We went in through a living room, a room with 3 beds to get to the kitchen. It was dark, stuffy and an almost robotic sound was eminating from the back. It was the sound of teeth grinding, and it was coming from Tamara. I stood in the bedroom for a few minutes before i walked into the kitchen, where she was. She is in a square room with a half door, and all i can hear is her teeth grinding. Then i see her hand, her finger movements are filled with autistic traits and then her head pops out. She does it in a sideways manner so that i can see her full face as she looks at me, all the while griding her teeth. Her left eye is bruised and shut, her hair is shaved off. And she is locked in a square room. Her bed is a mat on the floor, her pillow is on the floor, her toilet is the floor. 

I walk into the kitchen while my dad is having a conversation with the mother. The dogs are barking and the stuffiness and heat are suddenly gone. All i can do is look at Tamara and i cannot think of a single thing – my mind is empty. Her mother  hands her a plate of rice and curry and she retreats into her little square room. I move closer to look at her. The room is dark, its dirty, it has a window and not much else. We are told this is because she breaks things and uses them to hurt herself and others. We are told she stays in that room all day, coming out only to bathe. We are told that her eye is bruised shut from self harm, that she doesnt know how to use the bathroom and that she eats food from the floor. I peek into her prison to watch her lie on the floor and eat her rice which she has tipped onto the floor infront of her. She touches the rice. Spreads it out and in that moment i think – sensory deprivation. And in the next moment i think, who cares? Autism or not, this person is living in a filthy square room, whats her quality of life? How much has she missed out on, how much progress could she have made if the appropriate resources were available? How many others are there?

I get caught up in conversation and i dont realise that Tamara is now standing next to me. She is the same age as me, same height. I feel a touch on my arm, theres a gasp, and the mother takes a step towards me. It takes me a moment to realise its her, reaching out to me. Her hands are covered in curry and rice but how amazing that she reached out to a complete stranger? She held my hands and stopped grinding her teeth. She examined them thoroughly and then settled on my nails. (For those of you that dont know me, i have really long stilletto nails with some “out-there” designs most of the time.) She looks at them, turns them around, feels them and then she pushes me away. She starts grinding her teeth again and goes back to her world.  

We go outside where we are shown a new house which is being built for Tamara and her family by someone local. 

While we stand there we hear about how Tamara was a result of an affair with a married man, who then left the mother for her sister. We hear about how she has no support from the government and how she has been unable to work in the past few year as she is getting older and there is literally nothing around them. We hear about people coming to see her and taking pictures to then use them for their own profit. She has never been to school, she doesnt know what autism is, she doesnt have any support yet here she is doing her best to tackle something unknown to her. The grandma is washing the curry off my hand, while i take in the surroundings. We are in the middle of nowhere. No neighbours, no water, no shops. She is telling my dad that what they really need is a well, to have water available. Right now they have to extract it from the earth, place it in a pool like thing and boil before using. She has to do this every time Tamara soils herself. Everytime they need water. The cost of the well is approx 700€. 

As we walk back down the hill, towards our airconditioned car, we are thinking of ways to help. It wouldnt be the first time my dad handed out money, helped someone in need but i think we need something else to happen. We need change. So we contacted businesses in the area, we got our hotel involved which is a titan in its business in Sri Lanka. We will be contacting government, local and international organisations to raise the money, and most importantly to raise awareness. We are going to push for education on autism, for support starting from major organisations and filtering down to local communities. 

The last thing we learned on our visit is that Tamara was born on the 25th of December. Some religions live their lives saving all of their charity, kindness and love for this day. What better way is there to showcase your kindness, to cleanse your conscience and change the world than to think and pray for Tamara today? Think of all the children out there who are undiagnosed, the families that will never understand their child, the communities that have to worry about survival first. Embrace your world, get involved, learn and make change possible today. Reach out, give and love. 

Happy 25th of December world, whatever it means to each and everyone of you. Happy birthday Tamara. 

If you have information on any organisations that can help, or if you want to join us, please contact me. 

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