When I decided to do the ‘Tis the holiday season’ video series in July, I got a message from a person which has stayed with me since.
They asked: “Does Christos get any say in his “behaviors” being put up on the internet for autism awareness?”
Ouch. At first I was like, yeah he does. Then I read the question again and the words ‘any say’ and the quotes on behaviours hit me – hard. It’s easy to write about Christo, and it’s easy to share personal stories but I never thought of it this way. The words ‘any say’ tied my stomach in a knot, it made me so mad and sad that I had possibly given off the vibe that I am doing this for any other reason other than the well-being of my brother and the guarantee of a happy and secure future for him. Or that I do this for myself.
Not a day goes past that I don’t think of this question.
My aim in writing the blog as well as posting the 10 second videos is to give the world a glimpse into the ups and downs of life with Autism. Of course, taking into consideration that there is such a big spectrum of behaviours that I can only afford to show Christos’ attitude. However, I have always said I do not speak for the community, i speak for my family. Christos gets stared at, people shield their children when he is around, and some even yell at him to calm down. My hope is that when someone watches this video, or reads this blog next time they see someone like Christo they will handle the situation differently and that will make someone’s day better.
Unfortunately, I cannot ask Christos for his permission to share information on the blog or to share the videos. That’s one of the issues we have with Christos and I am sure others on the spectrum, that they cannot grasp concepts like freedom, permission etc. However, I have permission from his legal guardians, our parents who are also involved in raising awareness, to write and share this blog and videos.
I believe, personally, that one cannot preach awareness without putting ones soul into it.
And he is my soul, my world and I would never do, or post anything which would have a negative impact on my brother’s life or the perception of autism by society. What I write is the truth, a biased truth because I cannot separate my words from my immense love for him, but I try to show a reality different from others because you cannot ask for awareness without giving something to be aware of. Furthermore, freedom of expression and the wonder of the internet allows me to speak and share information and experiences with parents and siblings from Canada, Australia, the UK, India, Kenya and many other parts of the world. I get to share recipes and share experiences as well as give and receive the comfort of knowing that we are not alone on this journey. It also allows people that thought Autism was one thing to contact me and say that the video or the blog made them look and learn about Autism.
At the end of the day that is what we want – one person to learn one new thing about Autism.
About Dora Perera
Dora grew up in Cyprus and is half Sri Lankan. She is a law graduate from Lancaster University and the University of Kent and is currently working at the University of Kent and studying the i-LLM-LPC at the University of Law in London. In her spare time, she researches and writes an autism blog about her brother (christos90.wordpress.com), watches Netflix and plays boardgames with friends. She is an aspiring human rights lawyer and hopes to help make a difference for people with disabilities in the future.