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.

The Girl Behind The Face

Dreams of Australia

 

 

#TheGirlBehindTheFace                       https://www.facebook.com/GirlBehindTheFace

  

 

 

The mother of a child with special needs whose daughter was often called inspirational for behaving like other children, once lamented: ‘People seem to think these children raise themselves.’

We never intended to adopt a child, let alone one with a life threatening skin disorder like Harlequin Ichthyosis, which makes the skin grow at a super-abnormal rate. We were told nothing and were unprepared for everything. We were only volunteers wanting to do some good and have some fun.

Our book shares the story of how two ordinary people saving to start a new life and a birth family in Australia came to adopt and raise an abandoned child with a rare, deforming skin disorder in Hong Kong.

At times life has been harrowing, for years it’s been exhausting, but never has the laughter stopped for long. Life’s rarely been split between either laughter or tears; both have existed simultaneously.

You get knocked down; you get up again.

I know what it is to be unwanted and rejected and be punished for it; I know what it is to witness punishment dished out and received by others; I know what it is to feel helpless and feel unable to make a difference.

But why share this in a book? Because it happened. And understanding what happened – Auschwitz, abuses and the Baader-Meinhof gang; love, fear, violence and death – provides a context and a foundation for understanding how we could help Mui. It also lets people know you can rise above problems that happen in your life and do some good for others. It’s about being a survivor not a victim.

My dreams of Australia began when I was a child growing up in Germany. It was a dream of living somewhere far away, and new, and sunny and untroubled by my past.

To date I’ve got as far as Hong Kong!

 

What happened to our daughter, Mui, in the first three years of her life was often horrendous. Traumatized and hidden away on the fringes of society, it scars her to this day. Because, the first three years of life are so important. Yet ever since, we’ve done whatever necessary, as parents, to ensure she’s lived her life with a smile on her face.

Winning Mui’s trust was both hard fought and draining, early on. Alone, I would not have coped. My husband, Rog, and I have confronted and overcome each obstacle placed in our path, together. We have expected nothing, but have grasped opportunities when they have presented themselves. And we have embraced all the good times together with great relish.

But always the extremes: as a family we have routinely been screamed at in the street; as a family we have relaxed with Kate Moss in her hotel suite.

Our daughter can’t control her body temperature because she cannot sweat, and she should be careful in the sun because of the damage it may cause her skin, and at the age of twenty-two she suffers from arthritis. Yet, she is now the world’s first rugby referee with Harlequin Ichthyosis, dashing around the rugby pitches of Hong Kong!

When cyberbullies pushed her to the brink of suicide, we stuck together as a family, and came through it as a family. There are scars, of course there are, but everyone’s got issues, both visible and invisible.

We hope our book, The Girl Behind The Face, and Facebook page will contribute to giving courage to others to negotiate the cruel aspects of everyday life, as well as encourage people to do some good for someone else.

By Rog & Tina Thomas

 

Facebook page:            https://www.facebook.com/GirlBehindTheFace

Twitter:                        @rogthomasblog63

Blog:                            rogthomasblog63.blogspot.com

Hash-tag:                    #TheGirlBehindTheFace

The Girl Behind The Face

An introduction to Tina, Mui and Sai Kung… and our Facebook page: https://www.facebook.com/GirlBehindTheFace

Tina says:

I arrived in Hong Kong fresh from school in Germany in 1988 to live with my mum for the very first time. And 26 years later, I’m still in Sai Kung!

The white-sand beaches and rugged mountains of Sai Kung remind me of childhood holidays on Germany’s North Sea coast, and of the little German village I was born and raised in.

I met my husband Rog in Hong Kong – on the set of a TV commercial in Wan Chai – and two weeks after that we were engaged. He writes freelance and teaches writing skills privately. Three years later, while saving to emigrate to Australia and start a birth family, we met our daughter, Mui. Yet it had never been our intention to adopt a child.

During many harrowing moments when her life hung in the balance, and amid much fun and laughter, too, Mui became our unexpected adoption! A great deal has happened since, both good and less so, though a positive outlook has always meant the highs far outweighing the lows.

Sai Kung has changed enormously in 26 years, and Hong Kong is a lot more tolerant towards people with visible differences now than it was twenty years ago when we began raising our daughter. Twenty years ago in Sai Kung a woman spat in my face and accused me of having burnt my daughter – Mui was born with a rare skin disorder called Harlequin Ichthyosis. I believe Hong Kong is better than that now and I hope our book will help raise awareness of visible differences wherever it’s read.

Despite the changes down the years, Sai Kung continues to retain a strong sense of community, both Chinese and expatriate and connecting with the warmth and kindness of the local Chinese population has meant being able to call Sai Kung home.

We had never considered writing a book because we regarded ourselves as an ordinary family. Unfortunately, that changed abruptly one afternoon when our daughter was cyberbullied in the safety of our own home, to the point that she considered suicide. Yet, writing this book remained a difficult decision to take, in part because it included me revisiting my past in Germany in order to give the story a context and foundation that would allow the reader to understand both us and the decisions which led us to adopt our daughter.

Our book, therefore, has an international theme touching on courage, resilience and selflessness, while raising awareness of visible differences.

The story is primarily mine, with Mui playing the key role, but most of the writing was done by Rog. Mui has, however, contributed her own words, too. We hope it is a story worth sharing, because our daughter is, we believe, a girl worth getting to know.

With encouragement, Mui is now the world’s first rugby referee with Harlequin Ichthyosis, she volunteers with a Sai Kung sailing charity – Sailability – which provides a sailing experience for persons with a disability, and she is employed fulltime working with people with special needs.

We started our Facebook page: “The Girl Behind The Face” https://www.facebook.com/GirlBehindTheFace in the hope that people might “like” and “share” and “tweet” it. A popular Facebook page, we’ve been told, will help us find a publisher. We have been overwhelmed by the incredible support we have received, thus far.

We look forward to many more years in Sai Kung.