Then I realized the girl had been watching me draw and was amazed at what I had been able to create. The young girl couldn't imagine someone in my condition being able to create something so beautiful. At the time, I must admit...I surprised myself, but it was a great lesson for me. From that day forward, I was determined that I would not allow my physical disability to be an excuse. Of course, I would have challenges, but everyone has challenges. The day of my art exam was one of the happiest of my life.
One of my own drawings used charcoal pencil
Attending a regular high school with polio created a unique set of problems. And, remember, I attended school in a Third World country many years before anyone began thinking of making public facility accommodations for people with physical disabilities. There were and still are not too many buildings with wheelchair access or gentle ramps to glide up a sidewalk after crossing a street. For me, even going to the bathroom at school was a daunting task. I would often refrain from using the restroom all day because of the challenge. At the time, I was still only able to propel myself around on the ground using my arms to push myself about. If it was absolutely necessary for me to go to the rest room, the only restroom available was in the far corner of the schoolyard. In order to reach the bathroom I had to maneuver through a sea of children playing a variety of games. Another reason I would avoid the school restroom unless absolutely necessary was sanitation. Because of my condition, being so close to the ground, I was much more vulnerable to other infections and the restrooms were neither built for nor sanitized in a manner that made them safe for anyone with a serious disability.
While it's true that children can be cruel, I was fortunate to make a good many friends. Perhaps it was because I chose not to complain or feel sorry for myself. There were many days when I would invite classmates home with me after school. My mom would make my friends and I, hot tea, feta cheese, and bread for snack. After our treats, it was time to play inside the house. In Iran, soccer is practically like a religion. My friends recognized my limitations but went out of their way to include me in their games. I became the designated referee for all games and was actually pretty good at it.
I would forget that I was disabled and would participate in any kinds of normal physical activities. It was only when I was confronted on the street by some thoughtless adult or child that I felt less than human. Being forced to crawl along the ground on many occasions seemed to invite cruelty. It wasn't uncommon for me to hear myself referred to as some sort of animal. At times, I felt like an animal and when I had those feelings (however fleeting), I wished the earth would open her mouth and swallow me alive.
Family and friends have always been my lifeline. Oftentimes I would rebound from some depressing encounter with a stranger by throwing myself into some challenge with friends. I loved camping and hiking and would always insist on being included in any outdoor endeavor. One advantage of my condition is that I have never weighed more than 70 pounds, which meant I could easily hop on a friend’s back for a trek up a steep path or even scale a small mountain. And, it wasn't unusual for me to jump off a friend's back in the middle of a raging river and swim to the shore, with my friends’ help. It wasn't until later, when sitting by a campfire, that I realized how dangerous my adventure was for myself, and my friends.
I realize that it may seem, to many, that I have something against religion or faith. In fact, that is not the case. My beef is with organized religion or state religions (much like the one that rules Iran.) I am not arrogant enough to assume whether or not there is a God. However, I do not believe having a God or a religion is necessary to create or maintain a moral and just society. Indeed, I can think of many examples of religion being used to control a society or dictate to people how they must live their lives.
Another drawing of mine at the age of 25
In Iran, birth control is frowned upon...because of "religion". Subsequently, the country has grown from 20 million to more than 70 million in just less than 30 years. The result is that people are dying, children are malnourished, and education has disintegrated. And there is no place for someone like me in a theological society. I don't "fit in". I'm defective. God has punished me for some mystical reason. I am not granted the same rights and considerations of someone with the perfect body or with power and money.
The "punishments" for my unknown sins are many. I had to start to administrate insulin shots 2 times a day. I do not have enough fat around my stomach, so I am forced to give myself insulin shots close to my muscles, which associates with tremendous pain. In Iran, you must deposit money in the hospital BEFORE a patient can be admitted, while billions of dollars from oil revenue are spent for military to keep the government in power. In the society I was raised in, pity was my only reward. I had to learn to love myself for who I was in spite of the judgments passed down to me by the "righteous.”
First Major Operation:
During my second year of high school, a decision was made that we should go to Israel so that I might have an operation. Some of the best doctors in the world (who happen to be Jewish) had moved to Israel to show their solidarity with the only Jewish state in the Middle East. Other Jews have migrated from Iran to Israel as well; however, it's also true that many Jews have chosen to stay in Iran. Their view is that Iran is their country as much as anyone's and they love their country no less than any other citizen.
I was 12 years old during my first major operation. The doctors had decided to operate on my ligaments rather than my bones. The hope was that the operations would allow my ligaments to interact with my nervous system in a way that might allow me to walk or to at least have some increased mobility. The series of operations required me to be confined in a hospital in Haifa, Israel for months.
Unfortunately, there was no one who could remain with me while I was in the hospital. My mother had to take care of too many kids, and my father had to return to Iran for his business and to support the rest of our family. This left me alone, in a foreign country, with no ability to speak Hebrew. The good news was that there were a great many Iranian doctors and nurses in the hospital who I could communicate with in Farsi.
The memory of the pain I endured during these operations remains with me to this day. After each operation, a tape was put on from my knees to my ankles on each side of my legs. My legs were hoisted in the air and ten-pound weights were attached to each leg in an attempt to straighten them. My bandages needed to be replaced frequently and each time the duct-like tape was removed, patches of my skin were ripped from my legs with it too. In order to muffle my screams I would cover my face with a pillow. I don't recall a single night I didn't cry myself to sleep.
My operations went on for four months. The pain might have been worth it had the operations been a success, but they weren't. I returned to Iran in the winter, still unable to walk. As I looked out my window on a snowy day, my mother tried to reassure me. I was told that my condition was part of "God's will" or "plan" for me. What kind of God forces a child to suffer and shouldn't I have some say in whatever "plan" God might have for me?
It was one of the most depressing times of my life but, at some point in the middle of my despair, I remember making a conscious decision to rise up. Perhaps I would never be able to "stand tall" physically, but I became determined not to allow my disability to define who I was or limit what I might accomplish in life. I knew it was going to be a struggle, especially living in a Third World country where the disabled are practically ignored and shunned.
Sadly, not only were my operations unsuccessful, I was actually left in worse condition. Prior to the surgeries, I was able to fold my knees and move along the ground. When I returned to Iran, I was left with even less mobility than I had before I went into the hospital. Initially all of my issues affected
