Rugby, yoga and hope dash of ichthy – Mui Thomas
Growing up, we all want to be special. To stand out from the crowd – be immediately recognisable. We say to those we love “You’re one in a million! One of a kind!” But we don’t consider the flip side. What if you were so special, so exceedingly rare, that your very existence makes news?
Discovered by parents Rog & Tina in a Hong Kong orphanage, Mui was undoubtedly special and unique. She is one of twenty known persons globally living with Harlequin Ichthyosis – an exceptionally rare skin disorder caused by an aberration in the ABCA12 gene. Mui’s skin regenerates 1000% faster than average.
Mui is now a strong, vivacious and wickedly intelligent 27-year-old. She has overcome insurmountable odds, and is a strong advocate for those with visible differences and tackling cyberbullying. My father calls that sort of drive “fire in the gut”. A determination to pick yourself up, go – then keep going.
She’s not one in a million though. She’s one in 500 million.
We had met the month before in Happy Valley, a place she knows well. We drank coffee, and realised we had a shared love of lululemon and swearing in public. The day of our shoot and interview is one of the hottest of the year thus far, and as we approach the pitch I can smell the AstroTurf baking. Mui is unphased – I suspect this hardship pales in comparison to what she has been through.
J: This is a cliche question, but would you ever have thought, as a 16-year-old girl, you would become a rugby referee and yoga instructor?
“Not really, no. When I was 16, I wanted to end my life because I didn't think it was worth living. But with our initiative "The Girl Behind the Face" …”
She pauses. Though I also experienced bullying as a teen, I can’t fathom what she had heard people say and what she was remembering.
“Even talking about it now, really fucking sucks - it really sucks, but it does help somebody. If sharing my and my family’s experience of what we've gone through helps somebody, then even though it's hard, it's all about helping people. It's about being there. It's about being the one who stands up and says, ‘That's not right’."
Mui’s sense of justice is clear, making her a perfect candidate to referee the sport her Welsh father loves and introduced her to early in life.
“I wanted to play rugby actually. When I was 16 and going through the bullying, I thought I could do rugby as a way to get into a community. I was talking about it to my doctors, and they were like “nice try”. But they were also supportive - they said why don’t you see what you can do? So I went down to one of the local rugby clubs (DEA Tigers in Sai Kung). I started off picking balls up, and picking water bottles up. And then somebody was like, ‘Why don't you become a referee?’"
“I think I was probably 19 or 20, and that's when I really started looking after myself better - skin, health, fitness. That's when I kind of started getting into the fit-nut industry.”
Now a fully accredited yoga instructor Mui is in a unique position of being able to teach yoga to those with special needs.
“I've always been interested in the fitness world, but when I got my 200-hour Yoga qualification things started to go in the direction I wanted. I'm so lucky.”
“It’s about helping people. It’s about being there. It’s about being the one who stands up and says, ‘that’s not right’”
We have moved around the Happy Valley pitch, and Mui has been more than happy to display her yoga prowess. As we move to the playground area, I watch people observing her. Children, street cleaners, and the elderly stretching in the sitting-out area. Some look and then carry on. Others seem to circle, scrutinising, but not engaging.
J: We've been in a public place today, I see people look at you. How does that ever become normal? How does it not affect you?
“Growing up with a visible difference, I've always known I look different and people are always going to stare. It doesn't necessarily get easier, no matter how long you lived with it”.
J: It’s a basic human need. We want to belong, and we want to be accepted.
“I think people are more accepting in this day and age. They’re not all going to stop and gawk. There are people who used to do that. And there are people who still do that. But now, it’s very quick, rather than a ‘stop and stare’. There's a lot more acceptance in the world. Everyone’s beginning to learn about accepting others.
Mui is on her way to teach two classes, and we have run over time. It’s the 16th of April, and the world is still reeling from Covid 19.
J: What are your hopes for the coming months?
“That the whole world, not just Hong Kong, comes to some sort of stillness, some sort of harmony. Blaming each other is irrelevant. I hope for agreement, for everyone to come together, and get on with living”.
You can learn more about Mui here - https://www.thegirlbehindtheface.com/ and follow her on twitter - https://twitter.com/mui_thomas?lang=en
