I was only a child when my parents started seeking remedy for my situation by visiting a great many doctors. They were shocked by the answers they received. The doctors told them that their child was a “cripple” [term used during that time], and if they wanted to keep him alive, they had to consider a number of difficult and critical operations.
The first two operations were hip replacement surgeries. Next, another critical operation—a platinum rod implant in my spine—bent toward my rib cage caused trouble for my heart and lungs. Still, it was not over. After my body did not accept the platinum rod implant, I had a subsequent surgery for them to fix the distorted part of my spine.
Meanwhile, I was growing up and discovering myself. After the surgeries, I had to spend months in the hospital to recover. When I was discharged from the hospital, I had to live in plaster casts. That was more or less how I spent the days in my childhood.
In short, after all these surgeries, I was a child with a physical disability condemned to a wheelchair. Two paths lay before me [at the time]: Either my parents would be ashamed of me, and like most parents hide me from society leaving me to live in isolation, or they would choose the more difficult but right way and try to raise me to become an individual, even though no one or even an institution would give them consent to do so. For the latter choice, I would then be a lucky “cripple” [term used at that time].
My parents chose the more difficult but right way. They raised a boy who became an award-winning author and poet of Turkish Cypriot Literature; an Olympic player who was part of a pioneer team and the national team; a senior executive in various NGO’s who works for social development of the society, and works as an editor on two periodicals. My parents were the greatest opportunity I had in my life; yet, they only lent this chance to me. I would be most upset if I had not returned their favor.
A Student on Wheels
When I look back, I realize that against all those painful and difficult times, I still had a good childhood. Despite all those surgeries and treatments, I lived my childhood like a normal child rather than someone with a physical disability. I was a lively, social person.
In primary school I participated in many social activities; most of the time I was at the forefront. In school during recess, I remember being a goalkeeper and jumping from my chair to catch the ball. Even when my body was cast in plaster, I still participated in the game with my wheelchair and tried to score goals with my head, with respect to exceptional rules.
I came across barriers for the very first time in second grade. I was to tackle these barriers for the rest of my life. They were both abstract and concrete. The very first barrier that came along was architectural restrictions. It was then I had realized that architectural barriers may affect my life. There I was a child with a mobility disability condemned to a wheelchair; yet, people in charge never thought in their minds that a physically-disabled child would also like to attend school.
Thanks to my father, they built the ramps that helped me access my classroom. He made the attempts and he paid for it. Yet, it was not enough. Yes, I was able to access my classroom, but still I could not go the restroom. For all of those six years, I never once saw the doors to the restrooms, not even once.
Later on, architectural barriers never left me any peace. The laboratories were on the third floor: My challenge was to either skip classes or take the risk and climb up and down the stairs in a few minutes with the help of my friends. My friends did not let me skip classes. Each time, five or six of them grabbed my wheelchair and carried me to the third floor and back down again. I do not even remember how many times I almost fell down. I had a permit to not take gym classes. During gym classes and recess, I used to stay in the classroom. It was not easy for me. Together with an adolescent’s psychology, I was a shy, introverted boy. I used to pretend I did not care; I now recall that was the hardest of all.
High school was so problematic that I even considered not attending a university. Our school was a three-story building; whereas, there would be tens of buildings on the campus. How was I supposed to deal with the classes and the problems of being physically disabled at the same time? Would it be worth it? Had I known it then, I would have definitely done the contrary. But, I was such a youngster! Although my older brother suggested he would support me during higher education, he admitted he would probably fail his classes; nevertheless, he would not leave me alone there. Thus, my education ended there because already there were two people [my parents] who devoted their lives to me. I could not bear the third one.
A True Friendship on Wheelchair
There are some milestones in people’s life where the course of your life changes. My milestone was 5 September 1992. During those days I was such an introvert that I was sick of living. I owned a small stationery shop and my life was restricted to home and work. Every once in a while I went to the theater, that was all.
It was those days when I met my true friend, Mustafa Çelik, who also lived with a mobility disability. He was the one who taught me how to survive in a wheelchair. He used to call himself a paralytic, but in my opinion, he was tougher than the toughest person.
I must admit: Before I met him, I did not have any idea about how someone’s life would be if physically disabled. I was a very lively child; rather than sitting in a wheelchair, I preferred to crawl on the floor. This meant that ‘barriers’ did not come my way very often. Back then, I used to see the wheelchair as a toy to climb up and down on. I faced my first barriers in early adolescence—environmental. Still, I had no clue about how a mobility-disabled life would be since I had always had somebody around to help me. Yet, even a small number of problems were enough to make me isolate myself from society.
Mustafa Çelik was my teacher, my brother, my father, my friend. He taught me how to stand up for myself and be proud of who I am, even though, I remain in a wheelchair. He taught me how to struggle and survive. With this awareness, I realized how my family protected me without my knowing it. Yet, with the help of my true friend, I broke free from it. It was not easy to do so. My parents did not want to let go. They still do not, but I never blamed them. They, too, were also all alone throughout the whole process. If there is someone to blame, then it is the people who left them alone.
What Is It Like to Live in a Wheelchair?
I was supposed to tell you about my life in a wheelchair. Indeed, it is not easy to tell. It can only be learned by experience.
Still, I will try to describe it…
Suppose that I would like to take a walk outside. First, I would be confronted with the pavement [or sidewalks]. I would either have to find an accessible slope or risk my life to carry on in the traffic. If I was lucky enough to find one, I could hardly use it because it was never of the appropriate height or angle—thanks to the thoughtful road engineer! Usually, I used my hands or asked for other people’s help. Don’t despair! I have been telling you about the positive side of this story, which quite often I don’t find one.
Let’s keep going. After a while the pavement ended, but I was lucky enough to find a sloping curb. Still, I cannot access the road because there would always be a car parked right in front of the curb. Usually, the owner would not be around; yet, if I ever found the driver, he would tell me that he parked his car just for two minutes. It didn’t matter to him that I had been waiting for him more than ten minutes! Indeed, that person is not even aware that the accessible curb existed. He is not aware that the sloping curb is there for the physically disabled, an elderly person, a mother with a stroller or even for his own parents’ or wife’s benefit.
Recently, I was out to lunch with some friends. While we were about to leave the restaurant, we ran into a friend, who invited us to his place to chat over coffee. He lived on the fourth floor, but there was no elevator available. We accepted his offer with pleasure but wished we hadn’t. True, there was an elevator in the apartment. Unfortunately, one had to climb fifteen steps to reach it.
I have had so many similar examples in my life. This is just the beginning, only the tip of the iceberg.
It Is a Journey in a Wheelchair!
We live and we die. That is it. Yet, the whole process is an art and human beings are artists. Some artists have a good life and some do not. You may call it destiny, luck or something else. The way you live does not necessarily mean that you are a good or bad artist. All artists survive in different conditions, and the most they make out of it, the better they will live.
My conditions required struggle then and still do. It is a fight and I keep fighting. My true friend, Mustafa Çelik, always says, “Our fight is to let us be recognized by our personality, not by our disability.”
I am physically disabled and I live my life on wheels. It is true that being in this state, I have certain restrictions in terms of movement. Still, there are many ways to overcome them.
A story I like to tell is about a boy who dreamed of becoming a successful martial artist. Unfortunately, he had a car crash and lost one arm. His parents hired a personal tutor for him. At the first lesson, the master showed him some moves that could be done with a single arm. The boy started practicing. Weeks later, the tutor was still teaching him the same moves, in spite of the boy’s objections. The boy trained so long on that particular movement that he was almost perfect at it. One day, the master told the boy that he was ready for a tournament. The boy objected at once: He only has one arm and he can only do one move. Still, he could not resist the master’s will and attended the tournament. In his first match, the boy was hesitant, but the master told him to “step up and do his move.” The boy wins all the matches in a row one-by-one by doing a single move. He makes it to the final and beats the champ. The boy was surprised. He asks, “How has it happened, master?” The master replies, “Listen lad, there is only a single counter-movement for this move and it is to hold your rival’s left arm…”
As you see, it is not what we do not have or what we have in excess or which limbs we use to do what, but it is how we use what remains, what exists.
The limbs we lose may not affect our lives; they should not. I compensate for their absence with my soul and my mind to keep up with all the “normal” people. I may even say that I am better than most of them. Still…
An English proverb states “If the sentence continues with a ‘but’ overrule the part before ‘but’.” Unfortunately, it is the “normal” people who disable the disabled like me.
Well it is all right! It is a part of my struggle and I should keep going!
Editor’s Note: Orkun Bozkurt grew up on the island of Cyprus, the part that belongs to Turkey in a quasi-way. Turkish Cyprus has a different government than the mainland, yet shares culture, language and some governmental associations. Accessibility to both public and private places and on the local streets is still mostly non-existent.
(Written by Orkun Bozkurt)