Our place in the sun

At nine months old I contracted polio which altered the whole course of my life. Now having to spend most of my childhood in hospital, and feeling the need to protect me, my family decided to send me to live with my uncle in Spain. My family was always concerned about me, so through their need to protect me, I was insulated from the typical socialisation that most children experience growing up. As a result of this and a lack of accessibility in education, I did all my schooling at home or by distance. During my childhood therefore I didn’t learn the skill of answering questions in a classroom environment, or experience the concept of being in competition against other students. I didn’t even know that you should want to race to answer first, as I’d never been in a traditional classroom setting. Sometimes I had classes in a classroom but only with a few other students who also had disabilities. During my time in Spain, they would take us from the hospital to church every week, and I was always the last child to get the sweets or present they were giving out. I didn’t want to fight to be the first and I didn’t care to be either.


When I moved back to Syria, I was shocked to experience the same kind of social dynamics with my cousins. I remember a time when my cousins did something bad and they blamed it on me. I couldn’t defend myself and I couldn’t say that it wasn’t me, so I took the punishment. During my upbringing, having spent so many years in hospital I wasn’t prepared for this type of situation, and even today I can’t forgive my aunt for shouting at me, without knowing who was at fault.


I also quickly discovered that there was always some kind of competition between my cousins, for instance, to be the first to get sweets or treats. But I never took part in this and sometimes it was good and other times bad. The bad times were when the sweets ran out as everyone took their share before I could get to them, but other times it was good as they would come to me for company, because I was calm and wasn’t fighting. In either case, I didn’t want to fight for this as it didn’t matter to me either way.


As a young adult I continued to feel like this. Around the year 2000, there was a programme on TV called Who Wants to Be a Millionaire? and another one which was about winning your weight in gold. I never tried to apply to be a contestant on Who Wants to Be a Millionaire? because I knew I would never be the quickest to answer the question to be picked to compete. However, I applied for the programme to win my weight in gold because the selection of participants was randomly generated by computer, and I was actually selected!

Today I still feel this thing inside me that I can’t change, and it is a frustration that I must deal with in my work life too. When I’m in a leadership position I can take a leading role, but when I’m working as part of a team, seemingly competing against colleagues, I’m silent. This is not easy as sometimes I’m forgotten, or others take credit for my ideas. It isn’t always so dramatic, but this has happened to me many times during my life as I’m always the silent one. However, on the flip side, staying out of the competitive social games people play means that when I do speak, I am typically heard and listened to by everyone.


In work meetings if I don’t say anything for months, or am silent in a meeting lasting for several days, when I do speak, I realise that I can facilitate change. But this does not help me deal with the frustration that I feel about not being able to “raise my hand” to speak, even today as an adult. In my activism work I feel strong enough to fight with the whole world if needed, but when it comes to things in my private life, for some reason something inside me isn’t brave enough to do this.


I continue to struggle to defend myself when it comes to personal matters.


Today I wish that I had received more support to grow up the same as any other child, as much as was possible, to expose me to the realities of growing up rather than insulating me from them. I wish they would create a system for persons with disabilities or anyone who has experienced difficult life situations to be able to learn these essential life skills. We often speak of “inclusion”, but this means so much more than just being physically present in social settings. Being offered a place to “sit at the table” becomes a source of continuous frustration if we are always treated as that bereft relative who is expected to be silent and should be grateful simply for being present.


Competitive social games are not something I aspire to, and at a global level, such games are responsible for many of the tragedies of our time. In an ideal world of course, our societies would instead value the important human qualities that persons with disabilities can contribute. But we are very far from such an ideal world, and the impetus to change can only come from us. We need to learn to be assertive and collectively support one other on the journey. We too must fight for our place in the sun.


#chaviaali


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