I was born with necrotising enterocolitis and have lived with chronic pain my whole life. I’ve had to be independent since I was 12, attending all my own medical appointments and just understanding all my diagnoses. My parents were refugees from Vietnam and couldn’t really speak English, so this was a barrier to them understanding the health professionals, even with interpreters, because there are different dialects of Vietnamese.
I grew up in a very traditional, high pressured Asian way – with lots of pressure to achieve, I put that pressure on myself even though I was very sick. In year 12, I literally lived in hospital for about six months. And I still managed to get the score that my parents wanted me to, and nearly killed myself doing it.
I didn’t really identify as a person with disability until I started working in the disability sector. Mostly it was because of culture – in Vietnamese the literal translation for disability is very harsh and means “broken” or “useless”. So if you can still walk but use a wheelchair, if you’re able to still live life in a relatively ‘normal’ way, you’re not considered to have a disability. It’s harsh, but you just toughen up and deal with it. That’s what I did my whole life.