“Well that was an unusual start to the morning!”

 

“Well that was an unusual start to the morning!” writes a webinar attendee.

At the risk of sounding realistic, most people assume they know our family story just by looking at our faces: “Girl with red skin, they saved her!” as Mui once put it.

Invited to speak at a global International Women’s Day event by global search specialists Taylor Root, Tina, Mui and I took part in our first webinar.

More feedback reads: “You, all three, are heroes… What an inspirational family… Even the Mum’s back story was incredible… Such an inspirational story and some very important points to take away and learn from…”

Tina, Mui and I share our family story in order to raise awareness by involving and hinting at aims for positive change.

Thank you to everyone who made it happen and everyone who made the effort to watch and listen.

Moderator and Lawyer, Sarah Ingwerson, of Taylor Root writes:

Rog, Tina and Mui were the guests for our company’s International Women’s Day 2021 webinar. As a family unit they shared their story of The Girl Behind The Face and highlighted the many issues they have faced; discrimination, prejudice, abuse, unwanted curiosity, hatred, cyberbullying, mental health issues and ultimately survival. They have forged a loving life together – full of love, compassion, humour and support - to overcome all of this. Their story was truly inspirational, uplifting, humorous and honest. The feedback from our global colleagues and clients has been overwhelming and your story has inspired us all. I have no doubt the messages you shared will challenge our behaviours by bringing awareness of the myriad of issues you discussed. You are all very special people and I feel honoured and privileged to have been a part of the discussion.

A big shout-out to tireless HK organiser Gabby Kitney.

Please like and share our Facebook Page if you’d like to help us help others through our family story.

To book a talk, ask a question, or give us your thoughts please connect via our Facebook page or website: https://www.thegirlbehindtheface.com

Thanks, Tina, Mui and me (Rog)

Once upon a time in… Hong Kong

Standing up for Others

(The voice written in below is Tina’s, from a memory she shared)

Ah Chung was a giant yet only five-foot tall in flip flops that were so much too big for his feet.

He wore an old black sweater and old black pants. His face was brown and mottled, the skin stretched taut and thin. His “Fu Manchu moustache” was wispy grey, his hair silvery like a poet’s, and bristly eyebrows shaded eyes sunk deep in leathery sockets.

Sat hunkered on his haunches on the pavement, Ah Chung was a beggar, by which is often meant subhuman and invisible like a ghost. Ah Chung was a man.

On my way to work, I met Ah Chung each morning with a cheery: ‘Jo sun!’ and a smile as I do anyone. He acknowledged me with a crinkled toothless grin. Most days I gave him a soft drink or a sweet bread roll from a local shop; I often gave him money.  When I asked him his name, he said, ‘Ah Chung.’

If Ah Chung wasn’t at his begging pitch, I’d tell a friend at work that I was concerned. She’d laugh and say: ‘Aiyaah! Why always you are talking to beggars. So crazy!

One morning Ah Chung asked my name. I told him: ‘Tina!’ Instead, Ah Chung called me leng loi, meaning pretty girl.

One morning typhoon signal number 3 was raised. Monotonously fell the rain in squally showers. I struggled in the street with my collapsible umbrella which crumpled quickly in the wind and rain.

Ah Chung sat on his haunches beneath a building’s concrete ledge. I waved and when he saw me he beckoned me. His smile came from somewhere deep inside and he unfurled a huge green and black umbrella and pushed it to me in place of mine. I offered money; he refused. Instead, he squinted at the pouring rain then poked his chin at me: ‘Leng loi!’ he said – pretty girl.

My friend called me a crazy gweipo, when I told her I was touched by Ah Chung’s act of kindness; she moaned that I’d get germs from touching something from a beggar, so I teased her.

Ah Chung disappeared not long after.

My friend explained matter-of-factly that he was a sickly old man and probably dead. She said if Ah Chung had been a good man during his lifetime he would come back as a better person in the next. It was her belief and not for me to judge.

Ah Chung had nothing, yet when he saw I was in need, he found something to give. He stood up for me.

We all need to stand up for others, especially so in times of need, like now.

Thanks.

Rog Thomas

For more on why we are sharing our Family Initiative please check out our website: https://www.thegirlbehindtheface.com

Liking our Facebook page would help us tremendously. Numbers grow awareness. They bring greater attention to our core message: “Standing up for Others”

https://www.facebook.com/GirlBehindTheFace

Please leave a comment

“Climb the mountain so you can see the world, not so the world can see you,” David McCullough

Standing up for Others

Arriving in Australia 25 years late, Tina felt like kneeling, like the pope, to kiss the ground; it meant so much to her.

When caught up in the early years of Mui’s catastrophic health scares, when we still dreamed of new beginnings in Australia, before we stood up for Mui and adopted her, Tina wheezed and coughed. She visited a doctor in Sai Kung.

Proudly, Tina showed the doctor a photograph of Mui. The doctor’s stare lingered before finally she looked up. ‘Don’t give this child all of your love, Tina… She’s a heartbreaker… Getting involved with this child will be like a very bad roller coaster ride… Forget about her, Tina, and go and make a baby with Rog…’

25 not entirely uneventful years later, we made it as a family to Australia!

Invited to share our Family Initiative at a conference in Melbourne but without the funds to travel, Cathay Pacific (3 business class return tickets) and SINO group stood up for us.

Of the conference, Melissa Muir, of the U.S. District Court, Seattle, writes: “Amazing Mui and her equally amazing parents Tina and Rog presented a powerful reminder of why we work to stop bullying.”

Of the conference, Dr Lorraine Sheridan, President, Asia Pacific Association ofThreat Assessment Professionals writes: “Mui, Tina and Rog… received a standing ovation and all of our members were deeply moved and inspired. We all need to be reminded of the terrible human cost of bullying.”

The target of a bully suffers greatly; individuals with special needs cease to interest, their differences accepted; the individuals with special needs rarely have the luxury of becoming insensitive because their challenges repeat.

Too often, people believe they know how others should behave in a crisis or how others should respond to trauma; too often parents of children with special needs eat, sleep and live in the moment. As Tina’s mental health and mine has declined from 25 years of crisis management standing up for Mui and each other, a psychologist in Australia has stood up for us with counselling via Skype. She helped arrange two further Family Talks for us in Australia, at a synagogue and at the charity, Courage to Care.

Tina says: “Being of Jewish heritage is a very important part of my identity. The Nazis did more than kill my birth-family, they destroyed my past. People looked the other way. It is so important to stand up for others, and remember.”

Rabbi Shmuel of Elwood Shule writes: “Thank you Tina, Mui and Rog Thomas – The Girl Behind The Face – for your inspiring, moving and empowering presentation. Thank you for sharing your very personal story of courage, resilience and positivity in the face of unspeakable discrimination, hate and rudeness. You are a remarkable family and are literally changing the world for the better.”

Mike Zervos, CEO of Courage to Care writes: “We had the privilege of having Tina, Rog and Mui Thomas share their family story at Courage to Care. The family shared the many stories of the prejudice and discrimination they have endured. Frankly we were shocked at the appalling way some people react and behave.  The audience was enthralled by their positive attitude and their message that each of us can make a difference.

The doctor in Sai Kung was right, it’s been a “roller coaster ride”. She implied that standing up for others was not worth the effort; that we should forget all but self.

Mui’s skin disorder, her autism spectrum, are wrapped up and forgotten in her contagious, winsome smile. She says: ‘I trail walk, I hike, I run, I do yoga, I referee rugby and I fitness box. I love to have fun.’

Is standing up for others worth it?

You need not ask. It is.

It’s why we want a publisher to publish our family book – modelled on and fleshing out our Family Talks – to be able to continue building a platform to be a support to others.

Thanks.

RogThomas

For more on why we are sharing our Family Initiative please check out our website: https://www.thegirlbehindtheface.com

Liking our Facebook page would help us tremendously. Numbers grow awareness. They bring greater attention to our core message: “Standing up for Others” https://www.facebook.com/GirlBehindTheFace

Please leave a comment

Rare Disease Day shock

How did you spend Rare Disease Day?
American Jordan Flake and her son were forcibly removed from a US airplane for having a skin disorder similar to Mui’s.
The impact of a visible difference on individuals and their families is enormous.
As a family we’ve experienced fabulous moments… met wonderful people...
There have been bad times too...
Pointed at, laughed at, stared at, spat at, screamed at...
Daughter unwanted by her local international school, banned from her school bus, banned from areas of her school, banned from the pool of an international hotel, thrown out of a restaurant...
We live in Hong Kong. People are quick to tell us: "People behave far better in the West."
For sure there are cultural differences but there are challenges everywhere.
This year on Rare Disease Day, Jordan Flake was with her son on American Airlines.

Jordan and her son, like Mui, have a type of ichthyosis. 

Here is a link to the Washington Post article:

https://www.washingtonpost.com/…/american-airlines-apolog…/…

Here is a link to a statement the Ichthyosis foundation FIRST made: 

http://www.firstskinfoundation.org/…/first-response-to-amer…

Please "Share" and "Like" to help our story raise awareness amongst the general public and decision-makers. Thanks Tina, Mui & me (Rog)

Please check out our website: https://www.thegirlbehindtheface.com

Our family response to the ignorance and hate.

“She’d be better off dead.” “She should’ve been aborted.” “She’ll have to be sterilized.”

Why do people think Tina and I, or any parent, have ever wanted to be told this?

The Social Welfare Department told Tina and me a doctor had to sign-off on our ability to cope psychologically with Mui’s expected death in infancy before adoption could be considered.

But no one taught us how to cope when Mui survived.

One qualified psychologist had Mui shout: ‘1, 2, 3… be happy.’ Stupid. So Tina and I had to figure out how to support Mui ourselves.

There are no days off. Ignorance is confronted daily. Kids with special needs don’t raise themselves. It takes commitment, resilience and hard work and still does. We’ve chosen to do that with a smile even if a smile is sometimes just the best mask to get you through the day. So even though Mui was abandoned and hidden because of her appearance, she’s grown up smiling too!

But the ignorance continues… and “just ignore it” doesn’t work. You confront it, deal with it and move forward. That’s why we’ve shared our family story.

MUI says:

“I am an avid user of Instagram and I use it to share bits about my life. I don’t feel like I am a spokesperson for Ichthyosis particularly but I also like to try and educate if I can but I don’t force people to think a certain way.

This week, someone posted a comment under a photo of a baby with HI side by side with me (see above). They wrote: “should have aborted that thing Jesus Christ.” I wrote underneath, “thanks for saying that. Makes me feel fantastic about being wanted in the world”.

I have no doubt that if my birth parents found it about my HI early enough, they would have terminated the pregnancy.

I was adopted and I’m glad my parents gave me a chance in life when everyone else walked away.

The fact that Instagram person wrote this comment felt like a slap in the face because I still get affected by comments like this. It’s hurtful. This user doesn’t know me. And I don’t know them.

What she didn’t realise was that her comment kind of hit a chord with me. Words can be incredibly powerful. They stayed with me for much of the day. She will forget about what she wrote. I won’t do so as easily.”

https://www.thegirlbehindtheface.com

Ichthyosis & Halloween…

Once upon a time one Halloween… Tina, Mui and I walked through Kowloon. A woman recoiled on seeing Mui, then laughed... then stared... then screamed and screamed. The woman had mistaken Mui’s face for a mask… then realised it wasn't. 

Mui ran off in streams of tears.

Such screaming happened weekly if not daily on occasion. As parents, we dealt with it each time with Mui at home. Each time we talked it through, came up with answers and solutions, discussed it honestly and openly till Mui was comfortable. 

Mui still has difficulties coming to terms with her skin condition. She’s gone through years of (very loud!) denial of all things Ichthyosis. She isn’t as vigilant with her skin care routine as she should be.

People still send hate: “The b*tch is a f*cking ghoul… face it.”

People still say: “Just ignore it!” though wouldn’t if it were racially motivated hate. 

Too many turn their heads and look away.

In school one of Mui’s friends once piped up: “Mui won’t need a mask for Halloween!”

As parents we asked the teachers to consider a soft discussion of the young girl’s choice of words. We offered to come in to school and present a relaxed talk, though the offer was declined.

These days Mui handles Halloween differently. Her choice.

MUI says: “Everyone goes all out and splashes out on Halloween stuff and costumes. Thankfully I have a cheaper alternative! (Mui's photo pointing to her own face) I am deadly serious. There is an upside to Ichthyosis! This is meant to be a funny post!”

Dealing with Ichthyosis and Halloween remains each individual’s choice.

We’d love to hear your thoughts.

To help our story help other parents and children come to terms with their choices, simply “share” and “like” our Facebook page: https://www.facebook.com/GirlBehindTheFace

For more on our story please visit our new website: https://www.thegirlbehindtheface.com

Thanks. Tina, Mui & me (Rog)

This Blog first appeared on: The Girl Behind The Face

I'm out of hospital after 11 days on IV antibiotics. For a few days Tina was terrified. She was there for me day and night... as she was, aged 26, for Mui during Mui’s early years of endless hospitalisations. Tina is one amazing woman.

Mui’s psychiatrist says Mui processes empathy “differently”. Nevertheless, Mui has many great qualities. And she is never still! 

MUI says: “I took part in a fitness challenge called Project Change 2018 this summer. A 6 week body transformation challenge. For me, it was never about losing or gaining weight. I yo-yoed on the scales. Didn’t care. I won the challenge in a three way tie.

Every contestant was told to pick a charity. 

Once, I didn’t want anything to do with Ichthyosis. But because of our platform, The Girl Behind The Face, I was able to confront the fact that I have HI. I have been taught by my parents to give everything a go. I wanted to show people that no matter your limitations, don’t let that stop you from doing your thing.”

TINA says: As The Girl Behind The Face, the three of us have raised HK$36,515 for Ichthyosis related causes. Mui’s Project Change win means US$243 for the Foundation for Ichthyosis & Related Skin Types.

Here’s a video of Mui’s Project Challenge:

https://www.facebook.com/716884821996742/videos/2101576209861741/

To help our story help other parents and children simply “share” and “like” our Facebook page.

For more on our story and future charity challenges, please visit our new website: https://www.thegirlbehindtheface.com  

Thanks Rog