We spoke with Sotiroula Kythreot, Schuman Trainee at the European Parliament. Diagnosed with an unclassified hyposkeletical dysplasia of the edges and deformity she spent most of her life in a hospital. She shared with us her story of how she took responsibility for her inner voice.
“My name is Sotiroula Kythreoti (Sotia) and I had the luck to be born with a rare superpower that no ones can see or feel it, except me! I was born with unclassified hyposkeletical dysplasia of the edges and deformity. What does that mean? A normal skeleton weights about 9kg. Mine? About 3-4kg! I am missing some bones or they are not developed, as they should had. You will wonder how do I walk? Well I had many surgeries since I was 4 months old!
I was born in Cyprus but I spent most of my life in a hospital in the United States of America (USA), where medicine and technology was more innovative back then. I can consider myself as an “iron woman” as I am almost built with platinum. Hearing people judging me from young age “poor kid”, “is a beautiful girl to look like that”, “is sad, such a young person”, “she will stay single” even though I was just a kid, a teenager, with unknown future! A part of me believed what people said and all those feelings, thoughts were scary.
The doctors in my country? At the age of 90’s you could not rely on them. They diagnosed me with down syndrome, dwarfism, they wanted to play puzzle with me, break my few bones and “glued” them again back correct, because I was broken according to their mentality. After all those surgeries to look “normal”, people start judging “how come she is disabled?”, She looks fine”, “why you park in the disabled parking? You can walk”, “why are you using the disabled toilet? You are not disabled”. I even got a fine for parking at the disable spot!
A daily fight ring. You will think life is like that, but from my point of view, I am a fighter against the pain. I am fighting some days the struggle of the pain in my spine, feeling the screws punishing me for not getting much sleep, sleeping in a wrong position, because I did a wrong move, I sit down too much. Fighting to keep myself to walk straight, when my bones are screaming to lay down and get some rest, feeling my legs collapsing because I stand for too long. Those effects, affect my daily life and you cannot see it because overall, I am a healthy, happy and sociable person!
Many thoughts in my head back then and even now sometimes, how I will prove my superpower? Who is going to love me with 50cm of scars across all over my body? How can I build a life? Where I can work with so many needs? How my future would be? It’s frightening.
One of the hardest truths I learned about having scars and being unique is that: people are paying to get tattoos, to express their story. We have our scars. Our scars are there to remind us how strong we are wining those battles. If you connect the lines of the scars, is like a secret map and the destination lead to courage, to better understanding, to enjoy life with the small details. Keeping anger and not forgiving those who “don’t know” is holding us back, from forgiving ourselves for believing them.
I had to take responsibility for my inner voice. Every single day I had to fight, be either constructive or destructive, with my thoughts, my actions, and my opinions of myself. I was thinking, “Do you want to be the woman who thought that scars were big and would stop you for doing what you want?” Even though I did not believe 100% my superpower would stop me, I was trying to do what I want. It was the moment I chose me and not the opinions. Normalising invisible disability is my new “trend”. Because people judge the beautiful a nd the ugly, is in our nature unfortunately.
After I’ve been rejected from a lot of jobs when I said I have a disability, after I got fired because I am rare, after I was tested million times to be “certified” as a person with a disability here I am today working as a Schuman Trainee at the European Parliament. Sharing my story with you. Taking my privilege of my European disability card. My disability-parking card. All the rare people and me, we can finally get some peace of this judgemental society by fighting for our rights and for this disability card. Taking the privilege to get a job in an institution who believes in Equality and Diversity and is trying to give a better future for me, and all the people with superpowers!”