Doctor Said He Wouldn't Live past the Age of 2 | He Just Graduated as Valedictorian at 24

Jonathan Tiong was diagnosed with type two spinal muscular atrophy as an infant. The rare genetic neuromuscular disorder affects the nerve cells controlling voluntary muscles and causes them to become weak and eventually break down. His progressive condition meant that he would get weaker with time. In fact, a neurologist told his parents that Jonathan wouldn't live past the age of two. But last month, he not only turned 24 but was also crowned as the valedictorian for the National University of Singapore’s (NUS) Class of 2021, alongside the equivalent of a first-class honors. 

According to Channel News Asia, the young man also bagged a prestigious job at the sovereign wealth fund GIC and is currently working there as a full-time editorial writer. But these achievements, which may seem standard for some, were a miracle for the Communications and New Media graduate. "I think that’s a recurring theme ... I'm always being caught by surprise about good things," said the young man. That being said, he did humbly describe himself as "a very plain and average student" throughout university during an interview with CNA.

"I didn't think I’d be valedictorian for the simple reason that I was not a typical valedictorian. I didn't lead a (co-curricular activity), I wasn't the captain of some sports team, that kind of thing," he added. "I studied a lot, got good grades, but so did a lot of other people. So I didn't really feel outstanding." In his spare time, Jonathan loves playing an online game named Runescape and also watches Twitch streams. He also writes columns and blogposts regularly.

Despite him explaining why he hadn't done anything special to get the award, everyone in his school is aware of the extra challenges that Jonathan had to endure for years. Fatigue and accessibility in a world which is mostly created for the able-bodied are just a few of them. Speaking about NUS' infamous hilly terrain, Jonathan jokingly noted that it is also known as the "National University of Stairs." But the struggle for the young man was real as he had to study in the Faculty of Arts and Social Sciences, which has some of the oldest buildings on campus. 

"Sometimes able-bodied people can take a shortcut, walk up a grassy slope. But I can't do that," he said describing the number of corridors, lengthy walkways, and lift connections he has to travel in between classes. Moreover, he cannot attend classes that stretch out his day too long as the body parts that are in contact with the wheelchair begin to ache. Activities like maintaining his balance or even turning his head require a lot of effort. Jonathan, who requires a full-time caregiver, is accompanied to his everyday destinations by his father who has taken the role very seriously.

For three years, Jonathan had been "juggling" classes but then the pandemic hit, and remote learning helped him gain a sense of independence. "It takes away a lot of our limitations from the equation. When I'm at home, I don't have to travel anywhere so that takes away the accessibility and the logistics issue," he shared. "I don't have to involve other people who have to bring me physically around, so I’m a lot more independent in that sense." The 24-year-old even landed a job that he had only dreamed of. So when they offered him a position he couldn't believe it was happening. 

"It wasn’t something I expected to ever happen. I had wished for it, but wishes don’t come true – not in my life," he expressed. Jonathan has previously interned for GIC in 2019 and had left quite an impression on his first boss Ms. Mah Lay Choon.  "We acknowledge that there would be types of work that Jonathan would do less well in, but this would be the same for anyone since there will always be areas where one would be stronger in than others," said Ms. Mah, who is GIC's senior vice-president for communications. While he was unsure initially after getting the offer, he accepted it after realizing he "had no reason to say no," especially because his colleagues treated him really well and didn't patronize him. 

Jonathan, who had many laurels to his name, is dedicatedly pushing for a change in the concept of success. "I think the only reason why I’ve gotten the attention that I have when I post something online or when the media writes about me … is because I've met the traditional markers of success: Good degree, good job, prestigious company … despite being disabled," he explained. "[But] We need to acknowledge the fact that living with a disability is hard in itself. And every day, the people with disabilities out there who don’t get recognized, don’t get covered, are winning their own battles every single day."

He also notes that this in no way means lowering expectations for people with disabilities, rather seeing it as a recalibration of the concept. "If we recalibrate our definition of what it means to succeed, you'll find that everyone out there who is disabled, toiling away, day in day out quietly, no fanfare – I would say they are succeeding too. We all are," he said. 

References:

https://rarediseases.info.nih.gov/diseases/4945/spinal-muscular-atrophy-type-2

https://www.channelnewsasia.com/singapore/jonathan-tiong-nus-valedictorian-gic-spinal-muscular-atrophy-2300626

http://jonathansjunkyard.blogspot.com/

https://www.todayonline.com/authors/jonathan-tiong

Cover image source: YouTube Screenshot | CNA