Born with spinal muscular atrophy, Carmen Yau is a sex rights advocate for people with disabilities
- ‘I talk about sexuality and sex rights for people with disabilities. I also talk about body positivism and how disabled women can be more independent’
- Yau is chairperson of the Association of Women with Disabilities Hong Kong and a committee member at the Equal Opportunity Commission
Late diagnosis: I was born in 1981. My parents were working as managers at a glove factory in Colombo, Sri Lanka. My mother came back to Hong Kong to give birth and a month later returned to Sri Lanka. When I was a toddler, they suspected something was wrong as my legs were weak and I’d often fall.
We returned to Hong Kong a few years later and I had a lot of medical tests, but it wasn’t until I was six that I was diagnosed with (muscle-wasting disease) spinal muscular atrophy, the number one genetic killer of children under the age of two. The onset is usually in infancy or childhood and it becomes serious quickly, you can need 24-hour support and even help with breathing. I didn’t look that serious, which is perhaps why it took so long to diagnose me.
The diagnosis meant I was eligible for a special school and I went first to SAHK BM Kotewall Memorial School, which was a well-designed environment – they had a trolley truck that collected all the school bags and delivered them to the school bus.
Absent friends: By the time I was 12, I was on crutches and walking very slowly. I went to secondary school at the John F Kennedy Centre in Pok Fu Lam. The school offered boarding and I lived with a bunch of schoolmates who were also disabled.
Living with other people with similar health issues was heaven for me, but I saw so many good friends die. They died during operations or because of pneumonia or choking, or because they became malnourished and seriously sick. Every year, all the way through my teens, I went to the funeral of someone I knew well, some I’d expected to grow up with.