By: Faith, Sahiba, Claudia, Putry
“At that time, I do not know how to believe it. Until I was seven.”
At the mere age of four, Rendi Toh Jiang Sen, was told that he was partially blind. Now at 18-years-old, he finally came to terms with his condition after struggling to understand it for 16 years. He and his younger brother, Toh Bo Sheng, was both diagnosed with Alstrom syndrome, a rare genetic disease. According to National Institutes of Health (NIH), Alstrom Syndrome is one of the rarest genetic disorder in the medical world. This disease affects various body systems and many of these symptoms begin earlier in life during childhood which is exactly what Rendi and Bo Sheng went through.
How It All Started
Hailing from a family of four, both brothers suffer from the same rare genetic condition. Mrs Toh had to first break the heavy news to 4-year-old, Rendi, lightly, in hopes of lessening the pain and shock of him realizing that he is partially blind and may possibly suffer from hearing loss and other illnesses in the future. “I found out that…I have a sense of like why I am so blur, like you know, I fell down here and there when I walked around,” said Rendi.
Just like all of us, Rendi started his education journey at the age of 4. Since young, he cultivated a love for Mathematics. “It’s my favourite subject.” He claimed. Sadly, he was unsatisfied with how he fared for his end-of-year examination which just ended. He scored an admirable A1 for the exams but would only get an overall maximum grade of B3 which combines with the mid-year exams for the entire year. But he didn’t let this bring him down, instead it motivated him to do better. “This is not the end. It only ends when I finished my ‘N-levels’, he said with determination.
This determination and never-give-up attitude was developed from young as the brothers had to face the harsh reality of the society at a young age by themselves. This led to a co-dependent relationship between the brothers. Even though they bicker frequently, it stems from an unbreakable bond and brotherly love. Both the brothers look out for each other very dearly and fiercely as much as they can.
The Bullies and The Bullied
While other children’s childhood were filled with laughter and joy, Rendi had to face bullying at a tender age. He had to endure name calling and bullying from peers since young. He first experienced discrimination against the visually impaired when he attended Nursery school. At the young age of 5, Rendi attended a neighbourhood kindergarten and was called names and made fun of. “They used to call me a pirate,” Rendi recalled with a bittersweet smile on his face.
One might think that bullying stops at a young age. However, the bullying continued to haunt him as he grew older. Not only did it continue, it escalated from verbal to physical bullying as he went from primary to secondary school.
Rendi did not always attend normal neighbourhood schools, Rendi transferred to a new school in lower primary and attended Lighthouse school which is a school specially built to cater for the visually-impaired. While Rendi took a while to settle down and adapt to changes and struggled with his studies. This cause him to lag behind other kids which led him to repeating certain primary levels several times. But with pure determination and perseverance, Rendi made it to Primary 6 and finally sat for the Primary School Leaving Examination (PSLE) which he passed.
After his PSLE, Rendi proceeded to Ahmad Ibrahim Secondary School together with his younger brother. Ahmad Ibrahim was selected as the first pilot school for the Open Education Programme for the visually impaired students in 1967 and has since offer mainstream education programme for visually impaired students.
Other than Mathematics, Rendi has always loved sports. Playing sports has always been associated with fun and enjoyment, but that isn’t the case for the brothers. One particular memory he will always remember was being a target for the soccer team, on purpose.
Rendi shared, “One day, I went to a soccer field. At the end, they put me as a goalkeeper. It wasn’t a match. It was just me, a goalkeeper and the rest were like the soccer team mates. And they used me as a goalkeeper to kick…hit me with the ball.”
“My parents asked me why my shirt was dirty every single day. They told me to meet them somewhere after school. I did not know what was going on,” said Rendi. Rendi was always in the dark about many things; he would not know where his friends were headed to or the activities that they were going to do. They isolated and ignored his presence majority of the time.
Due to the bullying, he started to isolate himself socially. Even in situations where he needed help from the public, he did not dare to speak up and ask for help. He was afraid of being lied to and being poked fun at, and did not want to bother others too, least they got angry.
“It can be psychological issues or lesser supervision from parents. Bullying can also happen due to peer influence or insensitivity,” explained Mdm Sge, a social worker of 5 years. She also elaborated that most of the time, children tend to bully other kids as a form of inferiority complex trying to show off their “power”.
Mdm Sge also mentioned that children respond differently to the emotions they experience everyday. Children might also not be able to express themselves well which leads to bullying others as a way to express their feelings.
“At first it affected me a lot, but then I told myself they were kids, so I didn’t care anymore,” said Rendi, who is not a stranger to the childish comments thrown his way.
“They know I can’t see. So, I think they don’t know how to handle me.” Rendi, who is a Secondary 3 student, says he still faces discrimination daily from his classmates, yet gives his taunters the benefit of doubt. “Sometimes if I accidentally bump into them, they will use vulgarities.” It is not something that he is new to, but it is also not something that he should get used to.
After years of enduring bullying, Rendi claims that he is not affected by the discrimination and all the bullying now. He expressed that because of the bullying, he is more focused on achieving good grades and entering his dream course to prove them wrong instead. He is determined to not be wavered by his life’s predicaments and wants to be the best version of himself as he can be.
Achieving Big Dreams
Scoring average grades for his exams, Rendi uses a special reading monitor to study. It is provided for the visually impaired students. It is a very useful and necessary device for Rendi as he is able to see with the help of it which will allows him to study and diligently complete his work in class. “The monitor allows me to see because of the different colours being used.
It is easy for me to study and understand.” The monitor is also available for the brothers at home so they can use it to continue their studies and homework at home.
Unlike other regular students, Rendi and his brother are not able to study wherever they like as they need the monitor in order to see clearly.
“Even if I wish to study with my friends after school in cafes or in the library, it’s impossible,” said the 18-year old. The special reading monitor is too big and bulky to transport around, which would be impossible to bring around.
Rendi who is currently in the Normal Technical Stream, aims to study in a Polytechnic after graduation. “I realized that I would have to go through ITE first before entering Polytechnic, since I am in Normal Technical Stream, and that is an obstacle I have to face.”
Rendi strives to be one of the top scorers in his school’s cohort to be promoted to Polytechnic. He has big dreams for his future and constantly tries to improve himself by doing assessments even during the weekends and holidays.
“My brother always studies till midnight, and sometimes do not even sleep,” Bo Sheng commented.
Rendi feels that going to Institute of Technical Education (ITE) is an obstacle as he does not have any interest in the courses there. His dream course is to be in Aerospace Engineering. However, he acknowledges the fact that the course might not be suitable for him because of his condition.
He said: “There are many other doors for me. I also want to be a psychologist and I think this might be a more achievable dream.”
The Everyday Struggles
Going to school, completing homework, taking part in Co-Curricular Activities (CCA) and hanging out with friends seem like a completely normal and typical activity of a teenager. However, these daily activities are done a little bit differently by Rendi and Bo Sheng.
Just like any other 14 year-old, Bo Sheng gets a little too active at times and likes running. This however, is not a very safe habit for Bo Sheng as bicycles and construction cones get in their way and can be a hazard to them. Hence, Rendi always looks out for his brother and ensures that he does not get himself hurt when his mischief strikes.
Mini roads in car parks are also a hazard to the siblings. Since they are not able to look out for oncoming vehicles, they have to rely on their sense of hearing to ensure that there are no vehicles before they can safely get across the road.
The journey from their house to school takes an hour of 3 bus rides. While changing stops, they are dependent on the general public to tell them when their bus has arrived. As much as they have memorised the route to school, they depend on the public for help when their bus arrives, or when they need to alight from the bus.
Even though most of Singaporeans are willing to help, there are some who stare with judgement and curiosity apparent in their eyes as the brothers navigate through crowds.
Nevertheless when they are faced with the harsh and cruel side of society, Rendi and Bo Sheng has always sees the cup as half full instead of half empty. With an optimistic view in life, the battle is already half won.
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