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"Only a life lived for
​
others is a life worth

​living."

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Our TEDx video!

7/31/2015

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On April 18th, 2015 we were invited to give a TEDx talk in front of 700 people.

Mui’s initial response was: No way!

We discussed it as a family. We said if she were willing, we would step up together as a family.
Mui agreed to “give it a go”!

We’ll let you decide if she did a good job or not, and whether our family’s story is worth sharing.

So... what do you think?
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 Why Write a Book? And why we'd like you to click "Like" on our Facebook page

7/29/2015

32 Comments

 
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Why write a book?
Because of recurring ignorance like last Thursday on the minibus.

On Thursday morning, Mui headed off to work as usual – to the Rock Foundation in Wan Chai.

Mui takes up the story:



I was running towards the minibus stop at Sai Kung Town Hall at about 8:25a.m. and though the minibus was almost full, I managed to get a seat near the front.

All seemed fine.

A few minutes later, as we were passing Lions Park, the driver started making some comments in Chinese and pointed to the bus stop ahead. I ignored him as I had no idea he was talking to me. The driver then stopped at the bus stop and pointed at me and indicated I should get off. I refused, and asked other passengers around me if someone could translate what the driver was saying.

I was told he was saying my face had allergies.

In Chinese, I told him I had a skin condition.

By now people were pulling out their earphones to listen.

Passengers said that the driver didn’t want me on the bus. I asked why. They told me he said that my face made him want to vomit.

Passengers were getting upset with him and saying this was “discrimination” and “there’s nothing wrong with her” and “drive the bus”.

I was in tears but I got it together.

A North American woman threatened to call the cops. She was also upset that this was happening and kept saying “this is discrimination”.

After almost five minutes standing at the bus stop with the driver saying my face made him feel sick and saying he wanted to vomit, a woman behind me offered to switch seats with me so we could just get to Hang Hau. We did that. She said she was going to report the driver and I thanked the woman.

When I got off, I wrote down the license plate number.

After that I rang my mum, but there was no answer. Then my mum rang back and I talked to my mum and dad. That helped because I was a mess by then. I couldn’t stop crying on the phone.
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My parents calmed me down and came up with some plans. Oh, and they also told me they’d give me a hundred dollars to buy something way too expensive with way too much cream from Starbucks! I got a “birthday cake frappuccino”!

I want to thank my mum and my dad (he helped me write this!) and all the people on the bus and people from all over the world on social media, for their support.

On Facebook, I wrote:

At Mui’s request, I have reported the incident this morning to the minibus company – 101m.

If / when required, Mui will follow it up with support from Tina and me (and, hopefully, you).

Unfortunately this sort of thing has happened all too often over the past 20 years – perhaps more frequently than people realize, and it’s often been worse. (It has happened overseas e.g. Europe, too. It is not only Hong Kong.)

And yes, you suck it up and smile, but no, you can never just shrug it off. While it is, of course, exhausting and upsetting to deal with as parents, it is so very, very terrible for Mui, or anyone else, to be confronted with.

Mui is an ordinary young woman, and despite her cheery exterior, such insults wear her down.

As a family, we do not believe in witch-hunts, nevertheless such behaviour as the driver’s is completely unacceptable.

As you can imagine Mui was bitterly upset on the phone to Tina and me. No one deserves such treatment.

We are grateful for the support given Mui by those with her on the bus.

We hope that by raising awareness of living with a visible difference, we will help contribute to reducing and / or eliminating such instances as endured by Mui, today.

The Following Day

Mui adds:

Yesterday morning’s minibus discrimination was pretty unpleasant but many people have come forward to help. It’s been suggested that the driver in question has been known to cause trouble and others have complained about this. I spoke to the old chap who works at the minibus terminus and through translation, he said the driver has been fired over everything he has done.

I hope that people will be more open to those with disabilities and differences. Thank you so much for your support!

Mui, Tina and Rog XX
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As a family we say:

Of course, there is a lot worse happening to other people around the world, nevertheless, no one should be treated the way Mui was.

We hope our book, as well as our school talks and motivational talks, will help to raise awareness of, amongst other things, people living with Visible Differences.

If you think what happened to Mui is unacceptable then please go to our Facebook page The Girl Behind The Face and click “Like”.
Mui's Views
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Coming to America, 2004

7/24/2015

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In a recent family interview for the German magazine Brigitte, we were asked:

‘What’s the best thing you’ve ever done as a family?’

We said: ‘Going on an all expenses 11 day trip to LA & Disneyland in 2004!’

Why? Because so many people across the whole of Hong Kong, people we did not know and had never met, came together to show their support for our family. For what we, as parents, had done for Mui, and for a little girl with a deforming skin disorder whom the government had condemned to live in an institution on the very fringes of society; who’d fought repeated blood and chest infections and hospitalizations; who’d endured abandonment and repeated rejection, and who’d now learned to live life with a cheery smile on her face. Companies and hotels and individual people came together as one, to show their support.

Two of the supporters we’ve never met were: Mareile and Matthieu Paley.

At the time, Mareile wrote to two of the organisers, Alison Whittle and Nisha Parmanand: “… we had both seen Mui in the Hong Kong subway together a few days before we left for Europe to get married. The little girl had left quite an impression on us just observing her from afar for this 20 min. subway ride. She was sad, because a little boy had stared at her and then run away and started crying. She seemed to argue with the adult (her mom?) she was with about the world being unfair, but she had such an aura of strength, determination and a will to live which we could sense… that told us that there is an admirably mature character behind her face.

We would like to donate some of the money so generously given to us by our friends and family for our honeymoon for Mui’s Disneyland trip.”

We’ve never expected support, or taken it for granted when it’s been given.

That’s why, 11 years later, the memory of our 11 days in LA & Disneyland still bowls us over!

Find more recollections check out our Facebook page: https://www.facebook.com/GirlBehindTheFace

Mui's Corner
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