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.