When I was four years old I could walk. By the time I was five years old, due to bilharzias entering my spinal cord, I couldn’t walk anymore. Months of crying for my parents in various hospitals followed as they first put me in isolation while they tried to diagnose the problem, then stabilize me, then cure me, and finally rehabilitate me into coping with my new life in a wheelchair. At first I was too sick and too lonely to care about not being able to walk.
Once I was stabilized, I again became aware of my surroundings. I started noticing people staring and shaking their heads in sorrow at the revised version of me. I noticed other children say “shame” as they had seen their parents do, before running off to play – without me. I was different, an anomaly, not part of the mainstream. I had been relegated to the periphery. My loneliness made me turn to books and animals for companionship. Animals seemed to sense my loss and surrounded me with a comforting presence, while books took me on adventures and into wonderful realms where I reclaimed a sense of belonging. In my imagination I became one of Robin Hood’s Merry Men, robbing rich people in order to give the money to poor people, thus satisfying a need to level privilege. I kept Superman’s secret because just like Clark Kent, my physical characteristics led people to underestimate who I was and what I was capable of. I fantasized about secretly having superpowers and being a hero and fixing the world. As young as I was, I had become increasingly aware of a society based on intolerance and bigotry. I became aware of how people were treated, not only because of disability, but also because of color, gender or sexual orientation.
Before long my teenage years dawned. I was a girl with a pretty face and a broken body. Boys ‘liked’ me and told me so, but were embarrassed to be seen talking to me in public, and so I became embarrassed of myself. I became withdrawn and reticent and I became ableist. I hated being a person with a disability. I disliked people with disabilities and adopted the very attitude that had caused me so much pain because I didn’t want to be someone who mattered less. I wanted to matter. Not being able to walk didn’t bother me much anymore; what bothered me was the way people saw me and the way I saw myself through their eyes. It bothered me that I couldn’t go to the same school as my siblings. It bothered me that ‘normal’ teenagers were either condescending or avoided me. I didn’t matter enough for people to view me as worthy of inclusion in their plans and activities. The lack of inclusivity extended to buildings and beaches and schools and people’s homes. Steps were everywhere and nobody seemed to care enough to include ramps or lifts in their designs.
When I finally left school and began job hunting, prospective employers had no qualms about looking me straight in the eyes and telling me they had a policy of not appointing people with disabilities. My embarrassment turned to anger. I knew things had to change, but first I had to change myself. I had to look society straight in the eye and let it be known that I didn’t believe the lie anymore. I now knew that I was so much more than my broken body. In that realization I found my power. Finally I had come of age…
