Sherry Toh is a 25-year-old budding writer, avid gamer and disability advocate. She has contributed to international gaming sites, a United States-based health newsletter, and an anthology of essays on disability and inclusivity in Singapore.
When I met her, she was strapped into a one-seater sofa in her living room supported by a precarious pyramid of pillows.
This is necessary because Toh suffers from Spinal Muscular Atrophy (SMA), a rare genetic condition that affects the motor neurons, and results in the loss of muscle movement and control. In Singapore, it affects 40-50 people, according to the Ministry of Health, and patients get progressively weaker over time.
The Gen-Zer fan-girled about her favourite games and Taylor Swift, her fingers moving across a one-handed keyboard. She talked about her passion and projects with a quiet fire.
Only when her foreign domestic helper began to adjust her spectacles that had slid down her nose, did I realise that this young woman could not even lift her hand to push up her own spectacles.
What strength and flexibility she retains in her limbs, neck and a few fingers on her left hand are not enough to even perform simple daily functions like scratching an itch without help, Toh explained. Only the thumb and forefinger on her right hand retain enough function to type with.
Trapped in an immobile body with just a laptop, she is reaching across a wide chasm to connect with the rest of the world through her writing and gaming.
LIKE BEING STUCK IN COVID-19 FOREVER
Diagnosed when she was 13 months old, Toh never took her first step as a child. She never kicked a ball or rode a bicycle. She was very frail and often hospitalised. “For someone with SMA Type 2, a normal cough could be possibly fatal because our lungs are very weak,” she said.
Toh contributed an essay to the book Not Without Us, a 2023 anthology about disability and inclusion in Singapore. (Photo: Sherry Toh)
Toh, who has two younger brothers, was homeschooled for a few years. But her parents, worried that the stress of examinations would be too much for her, got her exempted from PSLE.
She describes her life like the pandemic, drawn out indefinitely. “The isolation, the fear of getting sick, the fear of financials, and the fact that you are missing out on experiences other people have – that’s my life,” she said.
FINDING COMFORT AND CONNECTION IN GAMES
As a child, Toh could still lift her arms and discovered a love for gaming. She began to use the Nintendo Wii video game console to retain muscle strength in her arms.
“There are physical therapists overseas who tell individuals who need to maintain muscle dexterity to pick up a controller and game. It’s recognised as a form of physical therapy,” she explained.
Role-playing games became a form of escape for Toh – a world where she could find her feet and overcome physical limitations.
Some of the games even featured characters with disabilities or chronic pain.
“The game Dragon Age has a character who is missing an eye and a hand. In Cyberpunk 2077, another role-playing game, the main character experiences migraines, nose bleeds and seizures because a faulty microchip went into his head during a heist gone wrong. He spends the entire game trying to find a cure for that,” she said.
Toh relates to these protagonists. She also feels connected to online gaming communities.
Toh was a speaker at Singapore Writers Festival 2023 for a panel on accessibility in gaming. (Photo: Zeon/Jioplaygame)
“[In the physical world], the first thing anyone notices when they see me is my disability. That’s going to colour the entire conversation going forward. Sometimes, even strangers on the train stare at me for a really long time, like I’m an oddity,” she said.
She added that because SMA is rare, many assume she has a neurological disability, and completely ignore her, talking only to her parents or helper.
The virtual world enables people to see beyond her disability. “When you’re a human being, the thing that you want most out of your relationships is to be seen for who you are,” she said.
DISCOVERING WRITING
It was on Facebook that she met a fellow SMA patient, an American gamer and writer who introduced her to her first paid writing gig atSMA News Today, a US-based digital platform for the SMA community. They accepted her as a regular columnist in 2021.
From there, Toh branched into other writing assignments for gaming publications such as PCGamesN and Uppercut Crit, as well as articles on disability and representation for Rice Media.
“I credit a lot of my writing abilities to listening to Taylor Swift’s music over and over again.
“Swift has taught me the power of storytelling, details, and the way humans can relate to each other through music and events in our lives. One’s story may be specific to them, but the themes of love, bravery, tenacity, heartbrokenness, chaos, and finding meaning are universal,” she said.
The Gen-Z writer who does not have a primary school education says she got her writing abilities from listening to Taylor Swift music. (Photo: Sherry Toh)
Last year, Toh was approached to contribute an essay about gaming accessibility and disability representation for the book Not Without Us: Perspectives on Disability and Inclusion in Singapore.
That same year, she was one of 50 individuals chosen for The Game Awards’ Future Class 2023, which honours individuals around the world who elevate and diversify gaming.
ADVOCATING FOR HER FUTURE
With all that under her belt, you might think Toh’s career is only just beginning. Unfortunately, because SMA is a progressive disease, Toh’s window is simultaneously closing.
“About two to three years ago, my body started to decline very rapidly,” Toh said. She lost the ability to hold her body and neck up, and lost control of her head, which is why she has to be propped up by binders and pillows.
There is oral medication to stop the deterioration and potentially even reverse some of SMA’s effects – risdiplam is the only treatment currently approved by the Health Sciences Authority (HSA) for it. It currently costs S$375,000 a year.
On Jun 4, 2024, the Ministry of Health (MOH) announced that it will be subsidising the use of risdiplam for eligible patients from Aug 1, 2024. Details on the subsidy are not yet available. However, even with subsidies, Toh will still not be able to afford the drug.
Toh is crowdfunding on Ray of Hope to raise money for her SMA treatment, which costs S$375,000. (Photo: Sherry Toh)
Toh currently works six hours a day on weekdays as a virtual assistant for an education institute, checking on contracts, managing inventory and replying to emails. In addition to her freelance writing, she makes slightly more than S$1,000 a month in total. Her parents support her financially, but they too, live from month to month.
“If I can’t be on this medication, over time, my body functions are going to deteriorate a lot. I have [SMA] friends around the age of 30 who already cannot breathe on their own and have to go out with a ventilator attached to them at all times,” she told CNA Women.
Toh started a crowdfunding page last year, hoping to to raise funds treatment. The campaign will end on Jun 30 this year.
And at the point of writing, she has raised close to S$90,000. For her doctor to start treatment, she needs to raise half of the S$375,000.
Toh fights on, nevertheless. “If you focus on the fact that it can one day, it can all be taken away from you, then you will never get anything done,” she said.
“What I can do is hope for the best. It’s just a matter of whether I can meet the crowdfunding goal and whether our government will one day subsidise the medication.”
“The gaming industry has come so far in terms of inclusivity. The technology now allows for people of different disabilities to play,” said Toh, with her new Sony PlayStation Access Controller. (Photo: Annie Tan)
Work and gaming keep her going, and this, she said, is made possible by inclusive design such as Sony’s PlayStation Access Controller, which enables her to map the buttons so she can enjoy PlayStation 5 games with one hand.
Toh is currently taking an interactive fiction workshop. Her mentor is Mary Kenney, a writer who created a deaf character in the Marvel’s Spider-Man: Miles Morales game.
Toh is convinced that such diversity brings richness into our physical and virtual worlds, and she hopes to be involved in game development one day.
“Right now, [my favourite Taylor Swift song] is The Manuscript. It’s a song I’ve been turning to as I’m mining my life for an interactive fiction project in the pursuit of becoming a game writer. It reminds me that, even if I can’t necessarily see the point of the pain and trials I’m going through in my present, I may take all of that and spin it into gold one day in my writing,” she said.
It is a powerful dream from a young woman who cannot push up her own spectacles, but who with just two functioning fingers could one day create her own disabled characters on their quest for salvation, healing and hope – allowing the rest of us to walk in the virtual world of a girl who has never walked in real life.
CNA Women is a section on CNA Lifestyle that seeks to inform, empower and inspire the modern woman. If you have women-related news, issues and ideas to share with us, email CNAWomen [at] mediacorp.com.sg.
Continue reading...
When I met her, she was strapped into a one-seater sofa in her living room supported by a precarious pyramid of pillows.
This is necessary because Toh suffers from Spinal Muscular Atrophy (SMA), a rare genetic condition that affects the motor neurons, and results in the loss of muscle movement and control. In Singapore, it affects 40-50 people, according to the Ministry of Health, and patients get progressively weaker over time.
The Gen-Zer fan-girled about her favourite games and Taylor Swift, her fingers moving across a one-handed keyboard. She talked about her passion and projects with a quiet fire.
Only when her foreign domestic helper began to adjust her spectacles that had slid down her nose, did I realise that this young woman could not even lift her hand to push up her own spectacles.
What strength and flexibility she retains in her limbs, neck and a few fingers on her left hand are not enough to even perform simple daily functions like scratching an itch without help, Toh explained. Only the thumb and forefinger on her right hand retain enough function to type with.
Trapped in an immobile body with just a laptop, she is reaching across a wide chasm to connect with the rest of the world through her writing and gaming.
LIKE BEING STUCK IN COVID-19 FOREVER
Diagnosed when she was 13 months old, Toh never took her first step as a child. She never kicked a ball or rode a bicycle. She was very frail and often hospitalised. “For someone with SMA Type 2, a normal cough could be possibly fatal because our lungs are very weak,” she said.
Toh contributed an essay to the book Not Without Us, a 2023 anthology about disability and inclusion in Singapore. (Photo: Sherry Toh)
Toh, who has two younger brothers, was homeschooled for a few years. But her parents, worried that the stress of examinations would be too much for her, got her exempted from PSLE.
She describes her life like the pandemic, drawn out indefinitely. “The isolation, the fear of getting sick, the fear of financials, and the fact that you are missing out on experiences other people have – that’s my life,” she said.
FINDING COMFORT AND CONNECTION IN GAMES
As a child, Toh could still lift her arms and discovered a love for gaming. She began to use the Nintendo Wii video game console to retain muscle strength in her arms.
“There are physical therapists overseas who tell individuals who need to maintain muscle dexterity to pick up a controller and game. It’s recognised as a form of physical therapy,” she explained.
Role-playing games became a form of escape for Toh – a world where she could find her feet and overcome physical limitations.
Some of the games even featured characters with disabilities or chronic pain.
“The game Dragon Age has a character who is missing an eye and a hand. In Cyberpunk 2077, another role-playing game, the main character experiences migraines, nose bleeds and seizures because a faulty microchip went into his head during a heist gone wrong. He spends the entire game trying to find a cure for that,” she said.
Toh relates to these protagonists. She also feels connected to online gaming communities.
Toh was a speaker at Singapore Writers Festival 2023 for a panel on accessibility in gaming. (Photo: Zeon/Jioplaygame)
“[In the physical world], the first thing anyone notices when they see me is my disability. That’s going to colour the entire conversation going forward. Sometimes, even strangers on the train stare at me for a really long time, like I’m an oddity,” she said.
She added that because SMA is rare, many assume she has a neurological disability, and completely ignore her, talking only to her parents or helper.
The virtual world enables people to see beyond her disability. “When you’re a human being, the thing that you want most out of your relationships is to be seen for who you are,” she said.
DISCOVERING WRITING
It was on Facebook that she met a fellow SMA patient, an American gamer and writer who introduced her to her first paid writing gig atSMA News Today, a US-based digital platform for the SMA community. They accepted her as a regular columnist in 2021.
From there, Toh branched into other writing assignments for gaming publications such as PCGamesN and Uppercut Crit, as well as articles on disability and representation for Rice Media.
“I credit a lot of my writing abilities to listening to Taylor Swift’s music over and over again.
“Swift has taught me the power of storytelling, details, and the way humans can relate to each other through music and events in our lives. One’s story may be specific to them, but the themes of love, bravery, tenacity, heartbrokenness, chaos, and finding meaning are universal,” she said.
The Gen-Z writer who does not have a primary school education says she got her writing abilities from listening to Taylor Swift music. (Photo: Sherry Toh)
Last year, Toh was approached to contribute an essay about gaming accessibility and disability representation for the book Not Without Us: Perspectives on Disability and Inclusion in Singapore.
That same year, she was one of 50 individuals chosen for The Game Awards’ Future Class 2023, which honours individuals around the world who elevate and diversify gaming.
ADVOCATING FOR HER FUTURE
With all that under her belt, you might think Toh’s career is only just beginning. Unfortunately, because SMA is a progressive disease, Toh’s window is simultaneously closing.
“About two to three years ago, my body started to decline very rapidly,” Toh said. She lost the ability to hold her body and neck up, and lost control of her head, which is why she has to be propped up by binders and pillows.
There is oral medication to stop the deterioration and potentially even reverse some of SMA’s effects – risdiplam is the only treatment currently approved by the Health Sciences Authority (HSA) for it. It currently costs S$375,000 a year.
On Jun 4, 2024, the Ministry of Health (MOH) announced that it will be subsidising the use of risdiplam for eligible patients from Aug 1, 2024. Details on the subsidy are not yet available. However, even with subsidies, Toh will still not be able to afford the drug.
Toh is crowdfunding on Ray of Hope to raise money for her SMA treatment, which costs S$375,000. (Photo: Sherry Toh)
Toh currently works six hours a day on weekdays as a virtual assistant for an education institute, checking on contracts, managing inventory and replying to emails. In addition to her freelance writing, she makes slightly more than S$1,000 a month in total. Her parents support her financially, but they too, live from month to month.
“If I can’t be on this medication, over time, my body functions are going to deteriorate a lot. I have [SMA] friends around the age of 30 who already cannot breathe on their own and have to go out with a ventilator attached to them at all times,” she told CNA Women.
Toh started a crowdfunding page last year, hoping to to raise funds treatment. The campaign will end on Jun 30 this year.
And at the point of writing, she has raised close to S$90,000. For her doctor to start treatment, she needs to raise half of the S$375,000.
Toh fights on, nevertheless. “If you focus on the fact that it can one day, it can all be taken away from you, then you will never get anything done,” she said.
“What I can do is hope for the best. It’s just a matter of whether I can meet the crowdfunding goal and whether our government will one day subsidise the medication.”
“The gaming industry has come so far in terms of inclusivity. The technology now allows for people of different disabilities to play,” said Toh, with her new Sony PlayStation Access Controller. (Photo: Annie Tan)
Work and gaming keep her going, and this, she said, is made possible by inclusive design such as Sony’s PlayStation Access Controller, which enables her to map the buttons so she can enjoy PlayStation 5 games with one hand.
Toh is currently taking an interactive fiction workshop. Her mentor is Mary Kenney, a writer who created a deaf character in the Marvel’s Spider-Man: Miles Morales game.
Toh is convinced that such diversity brings richness into our physical and virtual worlds, and she hopes to be involved in game development one day.
“Right now, [my favourite Taylor Swift song] is The Manuscript. It’s a song I’ve been turning to as I’m mining my life for an interactive fiction project in the pursuit of becoming a game writer. It reminds me that, even if I can’t necessarily see the point of the pain and trials I’m going through in my present, I may take all of that and spin it into gold one day in my writing,” she said.
It is a powerful dream from a young woman who cannot push up her own spectacles, but who with just two functioning fingers could one day create her own disabled characters on their quest for salvation, healing and hope – allowing the rest of us to walk in the virtual world of a girl who has never walked in real life.
CNA Women is a section on CNA Lifestyle that seeks to inform, empower and inspire the modern woman. If you have women-related news, issues and ideas to share with us, email CNAWomen [at] mediacorp.com.sg.
Continue reading...