For people with cerebral palsy, sympathy is slightly strange

When I was 12, my classmates were assigned a task in geography where they had to colour the globe they drew. But I was excluded. One of my classmates pointed it out: "Why isn't Onira colouring her globe?"

My teacher rolled her eyes like it was the most obvious thing in the world and remarked, "Because she's got issues." 

My mouth was left agape. I was mad, but before I could retaliate, she left the classroom. I was fully capable of colouring. My Fridays were spent in Charukala (Institute of Fine Arts in Dhaka University). But I admit that my artistic abilities were limited. Even then, I was fully capable of colouring within the allotted time. 

I turned to my best friend, saying, "She's underestimating me." 

My best friend just shrugged it off by being defensive, "She's just being nice to you."

I knew where my best friend was coming from. My teacher was just being nice and considerate of my condition but it still stung. I didn't understand why though. Was I too critical of her kindness? Was I too ungrateful? Was I the problem? 

Incidents like this have happened throughout my life so far. I was a child with special needs in mainstream education. I have cerebral palsy, which caused me to have neurological issues like being slow and having speech and hearing impairments. I always knew I was different. My body worked differently than others.

What is cerebral palsy, really?

Cerebral palsy (CP) is a group of movement disorders that appear in early childhood. Signs and symptoms vary among people and over time, but generally include poor coordination, stiff muscles, weak muscles, and tremours. There may be problems with sensation, vision, hearing, and speech.  Other symptoms may include seizures and problems with thinking or reasoning. 

It is caused by abnormal development or damage to the parts of the brain that control movement, balance, and posture. Most often, the problems occur during pregnancy but may occur during childbirth or shortly afterwards.

It is one of the leading causes of childhood disability, with an estimated 50 million people living with CP worldwide. The burden of CP is estimated to be substantially higher in lower-middle-income countries compared to high-income countries, according to verified online medical journals.

The bigger picture

As per the findings of a medical study of the National  Institutes of Health published in May 2021 titled 'Rehabilitation status of children with cerebral palsy in Bangladesh: Findings from the Bangladesh Cerebral Palsy Register,' the global estimate of 1.2%, or 12 per 1,000 children under five years, represents 16.2% of the estimated 50 million of all children and adults with cerebral palsy.

In Bangladesh, the same study reveals, the population-based prevalence of CP was estimated to be 3.4 per 1,000 children, which approximates to 234,000 children with CP in a country of 166 million people. However, this is likely to be an underestimation due to survival bias, the study further noted. 

Flashback: My coping continues

From childhood to my pre-teen years, I  would have to go through two hours of physiotherapy after doing my homework and playing in the afternoon everyday. I would have to go through speech therapy with my parents at random times of the day. It was really frustrating how some things came so easily to others, but to me, I had to learn everything with extra help. 

I had to learn to write properly to make my writing legible. I had to use a spoon to eat because I simply couldn't scoop rice into my hand. But it only started to bother me when people pointed it out. Some people were mean but most of them were nice. 

At the annual sports event in my school, I was forced to participate in the race only to be the last one to reach the finishing mark. It felt as if no matter how fast I ran, everyone was faster than me. But I still got a medal for participating. 

To a competitive eight-year-old, it was a moment of happiness until I asked myself why. My mom responded, "You participated, and Ms Kelly was impressed by your dedication."

I pretended to just take the answer for what it was but I hated looking at the medal. It was as clear back then as it is now; this was a sympathy medal. 

Similar incidents happened throughout the years where teachers would praise me and give certificates because I was eager to participate and prove myself. I saw them for what they were: sympathy for me and my condition. 

But frankly, I can't differentiate between genuine and sympathetic compliments sometimes due to this.

I know that my parents would ask the school for a lot of help for me like asking the khalas (helping aunts) to  carry  my heavy bag and allot extra time to me during exams. But I would feel so embarrassed to show up to class when one of the khalas carried my bag to the classroom. 

This created a distance between me and my classmates. I feel that they were just nice to me because they had to be nice. I could also sense the annoyance in some of them, as the teachers generally treated me as the victim, which I wasn't. This created a level of formality that can still be felt to this day.

As the years passed by, I became more independent. I wouldn't really ask for help much except for when I desperately needed it. I don't think that my condition is very noticeable now like it used to be. 

I got into university and made friends who don't really care about my condition. They make fun of me for being clumsy, which is sometimes a result of my condition, but I never told them about it. 

I actually find it hilarious when one of them, Rina, always says, "Your entire existence scares me." She usually refers to the situations that I find myself in due to my clumsiness.

I told my professors at the university about my condition in the first class to avoid misunderstandings due to my hearing impairment. Apart from that, I initially decided to keep my condition a secret at the university because I didn't want it to define who I am as a person.

I fought hard against it, but I was defeated, my weakness eventually overpowering my willpower. I dreaded walking to the faculty to tell her about it, but it turned out to be the easiest thing ever.

Most of my faculties just took notice of it and didn't treat me any differently. Some did, but it was subtle enough. I genuinely thought I could escape this in university, but taking one course last semester cleared my misconception.

I told my faculty the way I always do. She started to point me out in front of the whole classroom and re-explain concepts that I understood the first time around. 

She would always ask me if I understood after addressing the class. It made me embarrassed even if I understood that she did it out of goodwill. I would avoid talking to any of my classmates because of this. 

This made me feel as much unseen and underestimated as was in my school days, something I haven't felt in years. I realised that no matter how hard I try to escape the sympathy and the judgement of my skills, I simply cannot erase a part of my being. 

I also fear that in the future, I will be judged based on my condition when I apply for a job. If not, then I fear that my condition will play a role in me being accepted for a job. 

This has been quite uncomfortable to write because I never talk about these feelings. I know that people had good intentions in all these incidents but I still felt underestimated. I felt pitiful. I felt weak. I felt ungrateful. I know that I am not any of these things. I am a fighter in every sense of the word. 

I had to work twice as hard to be able to do what came naturally to others. And I survived even if I did not meet their standards of 'normal.' Sympathy is, therefore, another word for underestimation to me.

Sketch: TBS

Onira Raisa Chowdhury is a student of Anthropology at a leading private university and a creative writer. 

Disclaimer: The views and opinions expressed in this article are those of the author and do not necessarily reflect the opinions and views of The Business Standard.