That Girl: Mui Thomas From The Girl Behind The Face

We chat to Mui Thomas about her role as a yoga teacher and rugby referee, the reality of living with a visible difference and her goals for next year.

Our That Girl this month is Mui Thomas, an integral part of The Girl Behind The Face, a global initiative dedicated to creating awareness of cyberbullying, mental health and visible differences. Mui is strong, charismatic and capable. She is also one of 20 known people in the world with Harlequin Ichthyosis, a severe and often life-threatening skin condition caused by a change in the ABCA12 gene. Harlequin Ichthyosis results in skin growing 10 times faster than most skin. Mui has overcome insurmountable odds to be where she is today – and she does it with a smile, a laugh and a “give it a go” attitude.

The Girl Behind The Face is a platform for Mui and her parents to share their journey, with a mission to turn assumptions and prejudice into compassion and understanding. As the world’s first rugby referee and yoga instructor living with Harlequin ichthyosis, Mui has created a life she is proud of. I first met Mui when we were both at school, and every step of her journey proves what is possible when you refuse to let your circumstances define you. She speaks out for others and tackles cyberbullying headfirst. We chat to Mui about her upbringing, her goals, the hardest parts about living in Hong Kong with a visible difference and what she’s most looking forward to next year.

Read more: Hong Kong-Based Female Founders Share Their Life Lessons

Tell us a little about yourself. Where are you from and how long have you lived in Hong Kong?
I was born and raised in Hong Kong. So I’m one of those HK kids from an international school with an accent no-one can decipher! I grew up in the green hills of Sai Kung and now live just outside of Sai Kung.

You’re an integral part of The Girl Behind The Face – can you tell us a little more about it?
Our family initiative, The Girl Behind The Face, is about standing up for others. It was originally set up by my parents to help me. They are the ones who run it and I’m happy and excited to be a part of it. I see myself as the poster girl who just enjoys getting out there and doing things. To paraphrase our upcoming book: “Sharing our story is our response to the cyber bullies who taunted me to kill myself.”

We raise awareness of Visible Difference along with the surprising ways people respond to it, Cyberbullying and the Mental Health Issues faced by the children and parents.

What was it like growing up with Harlequin Ichthyosis in Hong Kong?
Growing up with a visible difference like Harlequin Ichthyosis was no easy task for me. And for my parents, raising an abandoned child like me was really hard. They faced huge challenges but have never really raised me as a child with a disability. They were focused on giving me the best life possible so this is their story as much as mine. Ordinary people and ordinary families are different – they don’t get it. Again, to paraphrase our upcoming book: “we want our story to start conversations”.

To raise awareness, we give Family Talks at schools, companies and NGOs. You can check out our website to book one of our talks. We all contributed to the “Talk narrative” and my dad wrote our story, Stand Up for Others, as a performance in which he, my mum and I alternate back and forth on stage as we share.

This year we were sponsored by Cathay Pacific and SINO Group to take our Family Talks to Australia, including to a Melbourne synagogue – my mum goes to church, but she is also the birth-granddaughter of a Jewish Holocaust survivor. For more, you’ll have to talk to my parents.

We’ve just completed our book about how and why my parents and I came to be a family – what happened to us then and what we have learnt. We want our book to challenge and maybe help change society. A Vice Principal’s comment in our upcoming book reads: “Your story is raw and real, challenging the listener to explore their own prejudices and inaction.” It’s been like a rollercoaster ride you wouldn’t believe, but hey it’s how I came to be Mui Thomas!

You’re also a professional Hong Kong rugby referee, and a yoga instructor – can you tell us a little bit about that side of your life?
My parents have always encouraged me to go out and try everything at least once. I wanted to play rugby when I was a teenager to, basically, get in with the cool crowd – but I was 18 and I had brittle bones, which meant tackling was really not the best of ideas. Nevertheless, I was told to make contact with DeA (now USRC) Tigers. I was in touch with the youth girls coach and soon I was helping her out, picking up water bottles, things like that. I was helping out with HKRU “Super Sundays” within weeks. While I loved being able to get involved in the game, I felt a little bit bored. Someone in passing suggested I try coaching or refereeing. I went for the latter and haven’t looked back. My main scope of refereeing is actually U12 mini rugby as that’s what works health-wise and speed-wise for me at the moment. However, I also help out at the senior end of the game with sideline and video work. I have been a part of the HK rugby community for about eight years now. I’m definitely no professional though! I would love to try and rise through the ranks of refereeing as long as my health and fitness allow.

There’s so much that comes with putting yourself out there – especially when it’s something so personal. Can you share your most meaningful milestone?

Being one of the oldest people in the world with Harlequin ichthyosis, I’d have to say that my most meaningful milestones are actually every year. Being able to see another year is sobering and meaningful to me. Knowing that when I was younger, I was often close to not making it, every year makes me feel incredibly lucky and while I shouldn’t say this, I often feel like I’m living on borrowed time. It shouldn’t be the case, but it often feels that way.

What are you most passionate about sharing about yourself or about people with visual differences?

I don’t see myself as a disability activist and I’m actually not a fan of the term “disability” myself. That being said, my parents have always encouraged me to go out and say hello to people. I am still a naturally shy person when I meet people for the first time and I do suss them out to check whether they’d be accepting of me or not. It’s not always easy but I am definitely a fan of the go out and make your mark approach!

It’s amazing that you’re merging different career paths and making it your own. What does a typical week look like for you?

Haha! There is no such thing as a typical week for me, which I love because it’s always changing. But I have two main jobs at the moment. I work as a yoga instructor both privately and at a gym in Sai Kung. I am also a carer/companion for a man with special needs. I’m fairly lucky in that I don’t often start work too early in the day, usually after midday. And hopefully, when Covid restrictions allow, there will also be some rugby work to be done. I love that most of my mornings are free for me to get on with things like medical appointments, sleep, the occasional quick catchup or helping out with The Girl Behind The Face. I worked in a “proper” office job until two years ago and while I miss the routine and knowing exactly what would happen day-to-day, I don’t miss the burnout. It took me a while to get used to the freelance life but I absolutely adore it!

What do you do in your downtime?
Downtime is a bit of a rarity for me because of my work patterns but I love nothing more than catching up with friends over drinks and good food. I’m also a big fan of a staycation, and with all the restrictions this year, a staycay hits the spot! If I’m not teaching or out in the evenings, I love to cook and put something on my projector screen. While I’m no chef, cooking and eating decent food just makes me happy! When I’m able to (schedule-wise), I also love nothing more than a yoga session from someone else or punching it out at Lights Out in Sheung Wan. I am also absolutely game for a cheeky junk in the summer or a hotpot in the cooler months!

What are three things you do to maintain work-life balance in your day-to-day?

1. Knowing that it’s okay to say no to things (within reason).
2. Enjoying what I do.
3. Listening to my body and not letting myself burn out.

We love that your work raises awareness about living with a visible difference in Hong Kong. How has your own experience and upbringing impacted you?

A lot of credit goes to my parents because without them, I would not be the person I am today. They focused on giving me the best life possible. This was, in part, because doctors truly thought I would not make it through infancy. Therefore even now, I’m all about trying to enjoy life as much as possible. Growing up in Hong Kong with a skin disorder or a visible difference was an experience. Because Hong Kong is such a melting pot of cultures, I’ve had everything from loud reactions to slight stares in my direction. It isn’t always easy to deal with people staring at me when I’m out and about. I have lost my way a few times in life, but my parents have always had my back whenever bad things happened and they continue to do so, even though I’m an adult.

If you don’t mind us asking, what’s been the hardest part about living with Harlequin Ichthyosis?
Definitely the stares and the reactions I get from certain people. A lot of people think I have this permanent smile and I’m always confident but that’s not always the case. I’m always insecure about people and their reactions toward me.

What makes Hong Kong feel like home for you? Being born and raised here, what do you think makes someone a Hongkonger?

I think living in Hong Kong makes one open to other cultures as well as respect each other. I think a Hongkonger is someone who is able to seamlessly blend East and West traditions as well as stand up for others – as we have seen recently.

What are 5 personal goals you have for yourself?
In my mind, 2020 is a write-off, so I’ll defer these goals to 2021:

1. Work with my parents to publish our book and further build our family initiative, The Girl Behind The Face.
2. Teach more yoga.
3. Work on my fitness.
4. Find peace in the little things (I’m an over-thinker and a worrier).
5. Smile!

How do you envision your work growing in the next one, five, 10 years?
For The Girl Behind The Face, we hope to be able to expand within Hong Kong and take our initiative around the world. We were fortunate to share our story in Melbourne back in February and when travel resumes, we will be able to share in more places and inspire decision-makers to take action on things like visible differences, cyberbullying and raising awareness of visible and non-visible differences. Publishing our book is our biggest goal to build a platform!

Yoga-wise, I hope to expand my teaching and work more within the accessible yoga fold, making yoga accessible to people who may not fit the normal yoga mould of being slim and flexible. But anything yoga related would be incredible.

Rugby is and will always be close to my heart. For as long as I can, and for as long as HK rugby will allow me, I’ll be a part of the community. I have had some truly incredible moments as a rugby referee and I hope there will be many more to come… all things permitting.

If you had one piece of advice to give to people out there working on their dreams, what would it be?
When I was unsure of doing something, my parents would always encourage me to “give it a go!” – best advice ever.

Follow The Girl Behind The Face on Facebook and Instagram. You’ll find more from Mui at @mui_thomas92.

Thanks to the talented Julia Broad for all of the beautiful images above! Follow her on Facebook.