Alden Boon

‘There’s Nothing Shameful About Disabilities… And What We Do Need Is Inclusion.’: Josh Tseng



Today, how I would describe the vision in my right eye is that it is like looking through frosted glass. In my left eye, the visual field is very narrow. What I see before me is like looking at a photograph with heavy vignetting. Colours are blurry. Between the ages of twelve to fourteen, the vision loss was not yet that serious. I did have to ditch the small screen of the Game Boy for the larger computer monitor. That was when I landed on my next obsession: Team Fortress 2. Due to my condition, I became pretty much a homebody, spending untold number of hours reading and playing the multi-player first-person shooter game.

Like all teenagers, I prized independence above many things. My mother, as is expected of a mother whose son was not only on the precipice of change but was also dealing with a disability, became extremely overprotective. We did not see eye to eye on a lot of things. Every request to go over to my friend’s place was met with disapproval. She would contrive hypotheticals to dissuade me: ‘What if you kicked over a vase? I’d have to pay for it!’ Even simple freedoms that my peers got to enjoy, such as returning home from school on their own, became a bone of contention. My mother insisted on fetching me to and from school every day. I insisted that it had to stop. We got into frequent shouting matches over the matter until she finally relented, “Go ahead! And if you get run over by a truck you couldn’t see on the way home and become a vegetable, I’m not going to take care of you.”

Why did I refuse to budge? Well, walking home from school alone was a rare respite that I relished. Being surrounded by people all the time at school and at home, the quiet journey home gave me space and silence to think. As a teenager, not having to hear my mother scream at me and everyone else for even twenty minutes was a huge blessing. But of course, I eventually found out that my mother would occasionally send people to tail me and make sure nothing happened to me. She just could not bear to relinquish the control and certainty she had over every detail of my life. Even though I still do not agree with her methods, in hindsight, I can understand a parent’s desire to protect her child, and a child with a disability at that, at all costs.

By the time I turned fifteen, my doctor told me that my glaucoma was getting even more severe. Should the inside of my eye continue to suffer extensive damage, it could inflame before deflating, much like a popped balloon, in a very painful way. She urged me to go for surgery, which entailed making an incision in the eye to allow fluid to drain more consistently. Not only would this bring my eye pressure under control, it would preserve the physical state of the eye. Preventing cosmetic damage to my eye was a higher priority than saving what little remaining vision I had left. It potentially meant that I could receive regenerative treatments such as stem cell therapy, if such a breakthrough in this field should ever transpire during my lifetime.

This was to be yet another surgery in a long string of surgeries. How I decided to go through with any surgery was to take a logical approach and weigh the risks. The odds of failure were about twenty per cent. If I didn’t do anything, the likelihood of something bad and irreversible would happen was a hundred per cent. It was immediately a no brainer when there was a high chance I would end up looking like something that’s paraded on Ripley’s Believe It Or Not! My mother was against my decision. She thought of every surgery as inherently risky — as they were.

But I put the surgery off, because I didn’t want to delay the taking of my national examinations, the GCE O Levels. So, my doctor put me on medications that would keep my condition in check. The medications made me drowsy. I had to take a leave of absence for weeks on end. Other side effects were frequent urination, which disrupted my sleep schedule. I couldn’t wake up on time and I resorted to studying from home (I’m a total trailblazer, doing the home studying thing way before it was cool!), and didn’t attend school for six months leading up to the national examinations.

So, in the face of my deteriorating vision, how did I adapt my learning technique? How did I study, for example, literature, which requires the close reading of a novel? With my low vision, it would have taken me years to reread the book from cover to cover. I remembered the main events of the story, though not the intricate plot. All I needed to do was get myself up to speed. There my classmates were, burying their faces in their books and defacing them with their highlighters and annotations. I found a rather nifty — if obvious — answer to my problem: audiobook. Blind people are natural problem solvers like that: we find ways to adapt, and we have life hacks to get us through the day. My classmates were furious with me, for I didn’t share my secret with them until well after the examination.

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Alden Boon
Alden Boon is a Quarter-finalist in PAGE International Screenwriting Awards. When he's not busy writing, he pretends he is Gandalf.