"Let’s give it a go": Raising Mui

Beside a sloping jungle airstrip in Papua New Guinea, the Australian pilot of a small light aircraft loaded with vegetables wondered out loud if my rucksack and I would be too heavy for his plane to takeoff. I’d asked to hitch a ride. He scratched his scalp with a baseball cap pushed far back on his head. He looked pensive, then shrugged, then he said: ‘Aye mate… let’s give it a go!’

I clambered onto sacks of sweet-potatoes and taro. The airstrip was hacked from dense jungle. I gazed through the windscreen ahead. Trees to the right of me, trees to the left of me, trees in front of me. Sweet-potatoes dug into my back. The engine raced, I braced on the sacks, we cleared the tree tops both grinning.

Raising Mui has been seat-of-the-pants, too.

First home visit… baths, body creams, howling screams and vegetable curry – first and last curry after changing her nappies! Or the hospital visits and her face masked by blood dried black and her stare not sad just vacant. And in Tina plunged with a cheery smile.

The rattling wheeze of Mui with a chest infection, the chattering teeth of Mui with chills and rigours, the rolled back eyes of Mui unconscious with a blood infection. At Mui’s side at home and in hospital untrained, ill-prepared and fearful, but with determination and commitment, laughter and smiles, we give it a go.

As a family we confront obstacles placed in our path. The strangers with their screams, and their stares, and their pointing and their “I think she’d be better off dead”. The ban from the school bus, the ban from the swimming pool, the ban from the restaurant, the cyberbullying, the suicide thoughts are seat-of-the-pants moments to be dealt with.

Opportunities are grasped when we’re offered them. Flights to America, a trip to Disneyland, to Europe and to Macau. The welcomes, the gifts, the warmth; the famous faces who say “hello”.

Give it a go’s meant embracing the good times with relish. Watching Tina paint pictures with Mui; witnessing Tina build Mui’s confidence to approach people in public when Mui’s instinct had been to be shy. To have Mui dive under our bedcovers eager for mornings of fun. Tina teaching her how to read stories. Me helping her speak with more clarity when her lips were for years stretched too wide. Her vocabulary had everyone purring as she learnt English with giant strides. The tingle of pride at her first solo bicycle ride: ‘I’m doing it Daddy, I’m riding!’ The frivolous jollity of shopping trips, of hikes in the mountains, of barbecues on carefree days in the sun.

Days that flash by yet are seared into the mind: I watch my train as it arrives in the station. At a window Mui kneels on her seat. When she sees me she waves like a maniac. Her eyes shout out loudly, “It’s DADDY!” The doors swish wide and she’s first from her carriage. On the platform she’s in the Olympics and her finish line will be my embrace. Her hair flies about as she’s running and she leaps for my arms in her haste. Cheerfully and loud she shouts: ‘DADDY!’ and I’m feeling incredibly proud.

There’s no shame to admit that we’re humble, but I’m proud that we “give it a go”.

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Strong Women… just get on with life

‘You always judge a man by how he deals with adversity’ is a not uncommon quote.

Women though, in my experience, tend just to get on with life.

When my favourite aunt needed to get from her village to another in the 1920’s but found no means of transport, she bought a small motorcycle on the spot and rode there. She stood up to my grandfather, too, whenever he put a member of the family down. When her fiancée was killed in World War One she never married. She just got on with life.

When my grandfather denounced my mother and my father on the doorstep of his apartment in front of my mother and my brother and me, my mother wiped away her tears, came home and made dinner. She just got on with life.

The first time Mui was rushed into the hospital emergency department with a severe chest infection when we were her volunteers, a nurse told us we were not allowed to be with Mui because we were not family. Tina stood her ground for over forty minutes and refused to leave the hospital. Finally the hospital staff relented and allowed Tina onto the ward. Mui was withdrawn and small on her bed, and suffering. The moment she saw Tina, her face exploded with delight. Each time after that when Mui was rushed into hospital, Tina, for two years as a volunteer and from then on as a mother, slept on the floor beneath Mui’s bed so as to be there for her. No beds were provided, no mats were allowed. After months of hospitalizations, I convinced Tina to come home for a few hours each night to sleep before returning each following morning before dawn to be at Mui’s side when she awoke.

Johnny Depp is the parent of a child who was once seriously ill. He frequently visits sick children in hospitals. The actor says: “The kids, bless them, they are so strong… they are so courageous. But the parents are the ones who are slowly dying.”

As a father, I would never belittle the role men play in their children’s lives or in the lives of those they help as volunteers. Men do get judged on how they deal with adversity.

And women? There have been days and weeks and months of adversity as Tina and I’ve raised Mui. There still are. Yet Tina has never complained about her own needs or on what she has missed out on. She has never expected help or support. She just gets on with life, as strong women do.

She’s made me a better person. She is my inspiration.

And now there is my daughter.

 

If you want to join us in building a platform to raise awareness of visible differences, cyberbullying and commitment you can do so by clicking “Like” at the top of our Facebook page The Girl Behind The Face and by sharing it with your friends.
 

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Here's why a vote for Mui matters

When hope is done there’s always action. When action is done there’s always help. When help is done there’s always love. And come what may there’s always Mum.
How odd to watch a TV medical drama and to, in seconds, relive a moment when a preteen daughter’s body dangles grey and limp and lifeless from her mother’s arms. A moment when all hope’s extinguished – just when hope is needed most – and as her parents we both think this time our daughter’s gone.
Yet still the mad dash to find the ambulance that’s got lost; the mother’s calm refrain: ‘Please God, don’t let Mui die’; the mad dash in the ambulance to the hospital; the calm resolve of doctors doing what doctors do. Hour after hour, till finally hope seeps back and the memory gets flagged up to be suppressed.
Till unexpected moments when the memory bubbles up and briefly floods the mind. But always there is the laughter and the joking to wind the lock gates shut.
Always the morning after the night before is just another day.
Life always carries on… come what may.
Our daughter says: “I still find the idea crazy that two people who only wanted to volunteer for a short while ended up scrapping their future plans to raise me. That shows some pretty amazing selflessness. But I'm happy they did.
And I will never be able to understand how my mum and dad managed to keep me alive, especially when knowledge of Harlequin Ichthyosis was so little back then. But because of them, I’ve been able to grow up and hopefully lead a normal life. They’ve done an amazing job and even if I don't always show it, I’m lucky!”

To vote for Mui in the Spirit of Hong Kong Awards click under her photograph on this link: http://spiritofhk.scmp.com/vote

To show support and help us raise awareness, please click ‘like” on our Facebook page: https://www.facebook.com/GirlBehindTheFace

Our website: http://thegirlbehindtheface.weebly.com

Visible difference is NOT a source of entertainment

Images of people with visible differences have been stolen and used on YouTube to exploit, belittle and dehumanise in order to entertain weak-minded people. Amongst them is our daughter, Mui, who was born with Harlequin Ichthyosis and who was abandoned at birth and Hunter who was also born with Harlequin Ichthyosis. The Ichthyosis community and others with visible differences have every right to feel angry that images were stolen and used in a “shock” video on YouTube.

Mui says, ‘I don’t know what’s worse, this or being cyberbullied?’

This is why we've started this petition:

 http://www.ipetitions.com/petition/end-shock-videos

Because cyberbullies drove Mui to the brink of suicide.

Hunter says, 'I am an advocate for people with visual differences and this video does not represent anyone with visual differences in a positive light.'

Our daughter and Hunter have not been raised to be a source of entertainment for weak-minded people.

These videos are not informing or educating, they are exploiting and bullying and dehumanising. It is discrimination. Is YouTube no more than a modern-day Victorian freak show? Is this what YouTube CEO Susan Wojcicki wishes to represent?

What Susan Wojcicki and YouTube are doing to safeguard people’s rights clearly isn’t working.

Help us STAND UP against these “shock” videos by showing your support and signing this petition http://www.ipetitions.com/petition/end-shock-videos in support of Mui, the Ichthyosis community and anyone with a visible difference in order to ask: “What more is CEO Susan Wojcicki and YouTube prepared to do?”

Earth Angels and Monmouth cap – A Father’s View.

During holidays in summertime, while a student studying Economics up in London, I worked on building sites in Wales.

I meet a band of characters: brickies, chippies, gangers, engineers, architects, labourers.

One man sticks always in my mind. A labourer. A lean man, and short, and always a Monmouth cap pulled tight on his head. All bone and gristle with a grip of steel. Mixed race and rightly proud. From the docks: ‘Tiger Bay’, as if that explained everything – and it did! A wise man, too.

In the site canteen. Morning break. A hastily made homemade sandwich collapsing between the fingers of one hand. Being teased for reading A Child of the Jago and taking notes. And then a clanger dropped. My crime? Using language unbecoming of a building site! And a brickie mocks me mercilessly: ‘Disposable income! Bugger me! There’s posh you are. Disposable bloody income! Me, I calls that beer money! Disposable income? Bloody students!’

Monmouth cap smiles reassuringly. I pick up a tabloid newspaper to paw the tits and bums.

Beyond Page 3, James Brown, the Godfather of Soul’s been arrested. An innocuous crime. ‘How come a man like that can be arrested,’ I say, ‘how can that happen to such a man?’

In a Cardiff accent, soft and raw, Monmouth cap smiles at me and says in his warm calm way: ‘He’s just a man, Roger. Just like you and me.’

Endeavouring to help others by publishing a book about ourselves, revealing our private lives, is a bit like pulling down our pants in public. Privates on Parade. And parading either cowed or with the organ-proud, engorged-proud pride of the Maharaja Bhupinder Singh. Or better, somewhere in between.

Fielding phone calls from reporters; requests made for talks from schools; photographers and cameramen shooting shoots. Articles in Sai Kung and Hong Kong and in Germany, in the UK and America, too.

More than one friend’s said: ‘You guys are famous, now!’ And not all speak with grins.

On Facebook, meaning well, a woman calls my daughter: “An Earth Angel” .

I thought of Monmouth cap: He’s just a man, Roger. Just like you and me.

We three, Tina, Mui, me, are ordinary people who’ve encountered extraordinary moments Good, Bad and Ugly and have coped as best we can, as in life we all do.

Our book is about an ordinary family: “just like you and me”.

FOR MORE:

 

Do check out our Facebook page: https://www.facebook.com/GirlBehindTheFace

Our YouTube video: https://www.youtube.com/watch?v=aCXIpRNkVbw&index=1&list=FLxPU0NBQ4ty6pCTStBVPw0g

And our website: http://thegirlbehindtheface.weebly.com

 

 

Why?

Why are we, as parents, still so deeply involved in our 22-year-old daughter’s life? Because she’s asked us to be.

Our daughter, Mui, has a very rare skin disorder. Most born with it die in childhood. She survived. It was a struggle. It took the courage of my wife to make Mui strong when everyone else turned the other way.

Then cyber bullies wanted Mui to kill herself.

Eventually, she batted away her suicidal thoughts.

But as a result of cyberbullying we’ve written a book. The “how and why” two ordinary people adopted an extraordinary child; and what we three have overcome before and since to still be here today.

We have no one to help us find a publisher besides our band of Facebook friends. But we’ve raised a daughter to adulthood alone and against all odds, so together we will soon get our book on the bookshelves. We welcome and appreciate your support.

This TEDx video is a response to the cyberbullies who wanted Mui dead.

Cyberbullying can happen to anyone.

Here’s the link: https://www.youtube.com/watch?v=aCXIpRNkVbw&index=1&list=FLxPU0NBQ4ty6pCTStBVPw0g

Please contact us if you have any questions or visit our website: http://thegirlbehindtheface.weebly.com

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

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

Mui continues 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.

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, Rog 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

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.

To find out more, here’s the link to our website: http://www.thegirlbehindtheface.com/media.html

If you think what happened to Mui is unacceptable then please go to our Facebook page The Girl Behind The Face and click “Like”.

The more people you tell about our Facebook page, the more opportunities we will have to raise awareness.

Thank you for your support.