PUBLISHED ONMay 08, 2024 5:25 AMByAmierul RashidAt 16, Raphaella Gautama found herself having to deal with unwanted stares in public after being confined to a wheelchair due to a rare bone condition.
That was in 2020, and the public scrutiny still persists today.
"You don't really see too many young people in wheelchairs," the 20-year-old told AsiaOne.
An onlooker might see it as nothing more than taking a few seconds to fully comprehend what they were seeing.
But as the one getting these stares, Raphaella said that it can be a rather harrowing and uncomfortable experience.
She added: "I'd tell myself that I'm fine with not going out at all. It's a bit sad to say but I got used to the staring."
The Temasek Polytechnic (TP) student graduated with a Diploma in Law & Management this year, and AsiaOne spoke with her about her condition and how events in her life before entering polytechnic had ignited her passion for law.
Career aspirations tend to be driven by factors like personal interests, values or lifestyles.
In Raphaella's case, it was a lot more selfless as her dreams of being a lawyer was sparked by the passing of her father in 2020.
When an individual dies, families do not only have to deal with the emotional burden of losing a loved one.
There is also the daunting legal and financial complexities that need sorting out.
Raphaella witnessed first-hand how overwhelming the death of her father was on her mother.
"Dealing with assets to CPF, my mum didn't know anything. She didn't know how to start or where to go," she said.
It was then that Raphaella realised there was a need to "bridge the gap" when it comes to accessibility to resources.
The legal proceedings and policies are all out there but the ones affected by it are somehow unaware, through no fault of theirs, of how it can affect them.
She asked rhetorically: "Why should people be put through this kind of stress, especially when they are going through grief?"
This painful experience led her to the idea of picking up a law diploma, learning the ropes of the profession in order to help others in a similar situation to her mum.
2020 was a tumultuous year for Raphaella.
Apart from dealing with her father's death, it was the height of the Covid-19 pandemic and Singapore had implemented the circuit breaker period where people were advised to stay home as much as possible.
On a more personal level, Raphaella became wheelchair-bound that same year due to fibrodysplasia ossificans progressiva.
Of the estimated 4,000 individuals worldwide affected by this rare condition, there are approximately 900 known patients, according to the National Organisation for Rare Disorders.
According to American healthcare company Penn Medicine, this is an extremely rare muskuloskeletal condition where muscles and tendons gradually transform into bone, creating a second "skeleton" of extra bone.
Given that it's a genetic condition, Raphaella told AsiaOne that she's had this condition since she was born.
But it only affected her in 2017 when she had what she thought to be a tiny accident.
Raphaella recalled: "It felt like an ankle sprain but when I went to the doctors, [they found out] it was a bone growth."
From then on, she was constantly "in-and-out" of the hospital and medical professionals were having trouble diagnosing her.
Doctors later diagnosed Raphaella with fibrodysplasia ossificans progressiva, and the immediate emotion felt from the young woman was that of relief.
When asked why, she simply replied: "Because they finally found the condition."
Raphaella mentioned how her parents had been "stuck in limbo" with her and she was thus relieved that they need not worry about what was happening to their daughter.
[[nid:671729]]
She's now on daily medication, and pain is something she deals with on the regular.
There was a time post-diagnosis where the same question would pop in her head.
"Why is this happening to me?"
But when asked if she felt any sense of injustice regarding her life situation, Raphaella replied with a quick "no".
She did not hide the fact that she struggled through the hard times, but the young woman found the mental capacity to not allow a defeatist mindset to engulf her.
Slowly but surely, Raphaella normalised the act of going out independently on her motorised wheelchair.
"They can stare all they want, but I don't have to explain myself," she said matter-of-factly.
When asked to describe herself as a student, Raphaella took a second to gather her thoughts.
In the end, she opted for the word "quiet" and mentioned that she wasn't the biggest presence in class.
Because of her condition, missing classes became part of her poly life.
Raphaella recalled some days when she "couldn't get out of bed".
More often than not, this meant missing lessons, but she's grateful to lecturers who did their part to ensure she wasn't left behind.
Outside of lessons, Raphaella found SENvocates, an interest group in TP dedicated to advocating for disabilities and Special Educational Needs (SEN).
Her voice perked up as she spoke about SENvocates and why it felt like a second home to her.
Rapahella said: "I connected with what SENvocates did because I learned that advocating for myself and others is important."
One of the initiatives she was involved in was Let's Hang Out sessions, an initiative to provide students with SEN a safe space to interact with each other.
Whether it's a workshop or setting up games, these sessions were seen as avenues to help students simply enjoy school life.
Looking back on her SENvocates days seem to fill her with pride.
"I didn't think I would enjoy school life much due to my condition.
"But despite limitations, it showed me, and others, that I can still do what I like to do," Raphaella said.
Looking ahead, Raphaella has her sights firmly set on a spot at a local university, with a major in law, specialising in criminal and family law.
ALSO READ: One woman's inspiring quest to support individuals with physical disabilities in Singapore
amierul@asiaone.com
No part of this story or photos can be reproduced without permission from AsiaOne.