What is So Wrong with MP Tanya Plibersek Calling MP Peter Dutton Voldemort from Harry Potter?

 A few hours ago I saw on MSN the report that MP Tanya Plibersek had said on a radio interview that MP Peter Dutton looks like Voldemort from Harry Potter. 

She told the announcer, 'I think there'll be a lot of children who've watched a lot of Harry Potter films who'll be very frightened at what they're seeing on TV at night. That's for sure ' 

When the radio announcer asked for further clarification, Plibersek added, 'He looks a bit like Voldemort and we'll see whether he can do what he promised he'd do when he was last running for leader which was smile more.'

The West Australian newspaper got on the bandwagon and published an image of Peter Dutton as Voldemort on its front page because Mark McGowan, the premier of Western Australian, labelled Peter Dutton an extremist. 

Now this has hit a raw nerve with me! Why you may ask, as we know it's just politicians sledging each other, and putting each other down, as politicians are well known for? Well, because I was born with a craniofacial syndrome, called Crouzon syndrome, which meant that my face didn't form properly and I looked distinctly different growing up until my final reconstructive surgery in 1985. 

In 1977 someone like me, though milder in symptoms, was called 'grotesquely deformed' by the Australian Women's Magazine. 

Growing up, I was called names about my face on a daily basis - goggly eyes, Frankenstein, Elephant Man, Freddy Krueger and so on. I was also rejected, stared at, pointed at, ignored, physically bullied and thought of as being intellectually disabled. People didn't judge me on my personality or my achievements or my Christian faith - they judged me on my face - my outward appearance. 

Did this affect me? Damn right it did. I spent my childhood feeling rejected by society. Society told me that I wasn't good enough because I didn't have a normal face. Society told me that I must be a villain like the Hollywood movie characters. Society told me that I was less of value because I had a facial difference. And because of these negative messages I constantly received, I developed some very unhealthy traits and two personalities. I spent every day trying to prove to the world that Jenny Collins was a valuable human being who had the right to be alive and be out in society - not stuck away at home in the cupboard as was suggested to my parents. 

I went on to have two children in the 2000s who also have my syndrome, plus a child with Down syndrome, and I've had to watch the same negative stereotypes forced onto them all by society. A society that still likes to criticise and judge people's facial appearances. A society that holds facial beauty and a symmetrical face that smiles, in high esteem and on a pinnacle. A society that is shallow. 

Personality and being able to do a great job at running an organisation, or a country, is not derived by one's facial appearance. It is one's morals, one's values, one's treatment of others, one's integrity; and one's ability to respect, to lead, and to get along with others that is important. 

Tanya Plibersek was reprimanded by Anthony Albanese, our new prime minister and she apologised to Peter Dutton. This was great but the whole scenario has brought to the surface the issue of saying that people with facial differences or disfigurements are evil or villains. 

This whole comment of Plibersek's that Peter doesn't smile much has also angered me too.  I have friends who cannot smile due to facial palsy and Bell's palsy. Does that make them villains? There are people with autism who often do not smile. Are they villains? There are people who have been burnt and cannot smile. Are they villains? And if someone does look similar to Voldemort, does that make them a villain?

My goodness me. I am shaking my head and my blood is boiling. 

MP Tanya Plibersek is part of the newly formed Labor government who have promised to Australia that they are going to change politics in Australia and make it positive. They claimed they are going to be more inclusive and govern for everybody. Ha! What a pathetic start it has been with this personal slur. 

Wake up to yourself Tanya Plibersek and others who sledge people's facial appearances. We cannot help how our faces look and nor should it matter. 

Let us look past the outward face and into the important facts about a person. Are they nice? Are they kind? Do they respect others? Do they do a good job at their employment? Do they have integrity? Are they honest? Do they have good morals and values? Will they help someone in need?

We are in 2022 now and there are way way way more important things to judge a person on. Politicians it would be fantastic if you could lead the way!

For more about my life see these news stories:

The real-life Wonder: Living with Crouzon Syndrome (9news.com.au)

Jenny Woolsey recounts her experience of the rare genetic condition Crouzon syndrome | KidsNews

(c) Jenny Woolsey 2022

Be Weirdly Wonderful! Embrace your disability and differences

www.jennywoolsey.com

 

The Generational Pursuit of an Ordinary Life - Crouzon and Down syndrome

On Monday I presented a talk to a local Probus Club about my parents' plight for me to have an ordinary life growing up. You see I was born with a rare craniofacial condition, Crouzon syndrome. That's me in the photo above. No one else in my family had the syndrome and Mum and Dad knew no one with it. Statistically the incidence of being born with the syndrome at the time, was 1 in 250,000 so why would they?

My parents were told by many in society that I wasn't valuable and should be hidden away, just because I looked different. At that time institutions for the disabled were in full swing, and freak shows were still in existence in the UK and America. My forward thinking parents ignored this prejudice, and actively fought against it. It was far from easy for them but they loved me and had a vision that I would have an ordinary life like my two brothers. My life could have been well different and much less successful and happier, if my parents had caved into the pressure that was exerted on them.

The second part of my talk to the Probus Club centred on my own plight to fight the prejudices that I have faced with one of my daughters. You see, my youngest was born with Down syndrome.

I started at the beginning of my story which is where most stories start. I shared that I had a very strong negative reaction when I was told my daughter had Down syndrome. She was 4 weeks old and the geneticist bluntly delivered the news with a question, 'Why didn't you know you were bringing me a Downs baby?' Well upon posing this question to my pediatrician, it seemed she wasn't sure due to my craniofacial syndrome and passed the buck to the geneticist.

The geneticist's kind, caring (sarcasm) delivery sent a chill down my spine. I had seen my daughter's oblique shaped eyes at birth but had pushed them aside as nothing had been said. Those eyes flashed before me as I digested the acid-tongued news.

This information about my daughter wasn't what I wanted to hear. I walked out of that office as if I was a zombie leaving a grave. The agony was cemented by a phone call the next day confirming she did have Down syndrome, and it was the most common type - Trisomy 21. In Trisomy 21, there are three copies of the 21st chromosome, instead of two, in every cell of the body. According to Google, that was also the worst type to have.

My world was shattered. But why? I didn't know anybody with Down syndrome, so why was I shattered? What was behind that reaction? Why wasn't I happy? Why wasn't I going, 'That's okay. She'll be awesome!'

I think I can answer that in one sentence... Society told me Down syndrome was a terrible thing for my child to be born with. 

At every previous scan, for all of my pregnancies, the sonographer performing the scan had meticulously looked for, measured for, and I'd had blood extracted to test for... Down syndrome. We had also been asked on each occasion if we wanted to have an amniocentesis to test for Down syndrome. Why would they do all these things, (and offer abortions up until birth as has happened with friends), if this wasn't going to be a life sentence? Anyone would think that Down syndrome was equivalent to being a mass murderer!

I am sure you can understand my reaction. Most humans would feel something negative inside, with this scaremongering. But the thing is I totally adored my baby before this 'label' was put on her.

People's reactions to my news weren't generally helpful either. 'I'm sorry,' was the standard reply, or if they were trying to be positive they would say, 'People with Down syndrome are always so loving and happy!'

Fortunately, I did come to my senses pretty quickly because the love I had for my daughter shone more brightly than the label.

Did you know that a large number of babies with Down syndrome are placed into foster care because their parents do not want to take the journey I was going to take?

In the past few years I have been researching and learning about the history of disability. I now know why I was rejected by society as a youngster, and it is the same reason people with Down syndrome still are being rejected - and aborted. They are seen as a lesser form of human being. They are seen as being imperfect. They are seen as Hitler saw the Jews - an inferior race.

You would think that in present-day 2019 we would have progressed a lot further in our acceptance of differences. But sadly we have not. As I explained to the Probus Club members, while women are still striving for equal pay and racism is rife, people with disabilities will not get a look in.

Yes, there has been some progress made. Like my parents were pioneers paving the way for me and others with facial differences, there are parents today making paths for their children with disabilities. Some of us have our bulldozers out and are pushing hard on the weeds and rocks.

Target has become inclusive in its use of child models. When you flip through the pages of its catalogues and look at the advertising in its stores you will see children with Down sydrome and other disabilities. I commend Target for this.

http://www.startingwithjulius.org.au/target-award-winning-adinclusion/

Our world is a better place for having a kaleidoscope of humanity.

Another fact I shared with the members was the alarming rate of terminations of prenatally diagnosed fetuses (I call them babies). In Australia, the statistics say that 9 out of 10 prenatally diagnosed babies with Down syndrome are aborted. The article below states it is 93%. This includes the false-positives. Killed. Australia should be hanging its head in shame.

https://thenewdaily.com.au/news/national/2017/08/17/down-syndrome-birth-terminations/

After the meeting, one of the members came to me and told me his daughter's story. She'd been told prenatally that her baby had Down syndrome. She was offered a termination but declined it. When the baby girl was born, she did not have Down syndrome.

In Iceland, it is 10 out of 10. Iceland is trying to eradicate people with Down sydrome from their society.

This makes my blood boil. Who gives these doctors the right to play God?

Down syndrome used to be considered a common condition, now it is listed on the Rare Diseases database.

As a human race, our desire for perfection seems to sit high on the scale of what's important. What happened to love?

I will continue to fight for my daughter and the other wonderful human beings who are born with Down syndrome. There has always been people with this syndrome, and as long as there are parents who will give them life and are willing to go in for battle for their children, there always will be.

These people offer their own take on the world and are able to make significant contributions to society. They are perfectly perfect.

My daughter is now 12 and we keep hearing the words, 'She's so amazing!' I must admit I get sick and tired of this, but I know we have a very different perception of what she is capable of. There are no limiting ceilings in our definition of Down syndrome. And her 'amaziness' is ordinariness. She is in mainstream high school, participating in regular school and community activities, and breaking down attitudes and prejudices of those around her.

One day I know I will see her living her own independent life, with a fully paid job, a partner if she wants one, going out and about pursuing her interests. I will see her having an ordinary adulthood just like my parents gave me.

To find out more about Jenny Woolsey who writes and speaks on Be Weirdly Wonderful! Embrace your difference, go to www.jennywoolsey.com

Ugly

 U is for Ugly

I was contemplating what I would write about for U. I even asked my husband for his thoughts. 'Understanding, unique, unicorn...' There were quite a few to choose from. My original idea was understanding but I've decided to shelve that one for another time. Why? Because I came across the above quote by my favourite author, Roald Dahl. I read it and thought, That's it! Ugly it is.

So why did this quote stir my soul? Because I believe Roald Dahl's quote goes against society's generalised ideal of what pretty and ugly is, and it resonates with my own opinion.

***

I'm a bit of a definition geek so I googled the definition of pretty:

1. (of a person, especially a woman or child) attractive in a delicate way without being truly beautiful: "a pretty little girl with an engaging grin"

This led me to ask, Well, what is attractive? And what is in a delicate way??? 

So... I googled the definition of attractive:

1. pleasing or appealing to the senses: 'an attractive village" 

Other definitions given were:

1. (of a person) appealing to look at; sexually alluring:  
2.  having qualities or features which arouse interest
3. relating to attraction between physical objects

This then led me to another question - What makes someone appealing? 

What do you think?
Is it their face, or how they smell - their scent or perfume, or the money in their pocket, or the clothes they're wearing? Or something else?

***

A few years ago I came across online, an article discussing the perfect face. I've just found another one on Oprah.com, discussing the Golden Ratio. This is what it said:

During the European Renaissance, renowned artists and architects used an equation known as the "golden ratio" to map out their masterpieces. Thousands of years later, scientists adopted this mathematical formula to help explain why some people are considered beautiful…and others are not.

Dr. Kendra Schmid, an assistant professor of biostatistics, uses the golden ratio and 29 other measurements to study facial sex appeal . These measurements are calculated to determine a person's beauty on a scale of 1 to 10. What does she measure?

A. First, Dr. Schmid measures the length and width of the face. Then, she divides the length by the width. The ideal result—as defined by the golden ratio—is roughly 1.6, which means a beautiful person's face is about 1 1/2 times longer than it is wide.

B. Next, Dr. Schmid measures three segments of the face—from the forehead hairline to a spot between the eyes, from between the eyes to the bottom of the nose, and from the bottom of the nose to the bottom of the chin. If the numbers are equal, a person is considered more beautiful.

C. Finally, statisticians measure other facial features to determine symmetry and proportion. On a perfect face, Dr. Schmid says the length of an ear is equal to the length the nose, and the width of an eye is equal to the distance between the eyes.

Most people score between 4 and 6, and Dr. Schmid says no one has ever been a perfect 10.

Read more: http://www.oprah.com/oprahshow/measuring-facial-perfection-the-golden-ratio#ixzz4eaJde9dY

I find this whole thing crazy. What do you think?

Does this mean beauty is an imperfect face because no one has a score of 10? 

***

Now, I will admit - here's my confession - I am sensitive to the 'u' word. I heard it often growing up. As a child I wanted to be one of the 'pretty' girls. I even thought that if I hadn't been born with my craniofacial syndrome that I would've looked like one particular girl in my year level. Her name was Lisa Teasdale. In my eyes she was beautiful and had it all. I was jealous and lamented that she wasn't me.

Now I haven't seen Lisa since I was young but I have seen many of the girls labelled as 'pretty' from my youth, and they are not so pretty now as they turn fifty. 

***

Next, I want to talk about a fellow author, Robert Hoge, who I have known since I was a child. I met Robert at the Brisbane Mater Children's Hospital Craniofacial Clinic. I was eight at the time, Robert was a toddler. We both went through our initial facial surgeries together. He was first, I was second. I distinctly remember recovering in the ward after my surgery, and refusing to wear one of Robert's beanies that the nurse wanted me to wear, to hide my shaved head with its large ear to ear scar.

Robert has written a series of books, and presented speaking engagements, about his life having been born with a facial tumour and legs that didn't form properly. His books are titled 'Ugly'.

I shuddered at the title when I first saw it, as I never saw Robert as being ugly. He looked different, like I did, but not ugly. 


The photo below is how I clearly remember Robert. It was after his operation, in the ward with the bandage on his head. I thought he was cute and I thought it was pretty cool that the doctors were able to help fix his nose. I was more traumatised by seeing a baby lying in a cot with his head taking up most of the width of the cot because he had hydrocephalus (fluid on the brain) and was dying.

In his book, Robert refers to himself as being ugly and that others thought so too, because of their treatment of him. Was he really ugly? Was he bullied because he was ugly or because he was different? I was bullied too. Was it because I was ugly or because I was different? I think the latter. In our era, people were scared of difference. In the 1970s racism was rift, as well as discrimination, and anyone who was severely different were locked away in institutions or kept at home. Difference in the community stood out. 

***

I really believe ugliness is all about a person's perspective. 

 

 

I went searching for memes about about being pretty. And to my surprise what I found was that most of the memes referred to other qualities rather than the face. Does this mean that society is changing its definition? I am unsure about that. What would the cosmetic industry do without the generalised perception of beauty? But, I do think there are plenty of people in society, who see through the shallow definition. 

***

I was discussing this 'ugly/pretty face' issue with my thirteen year old son. He told me without any qualms that the beauty of a face changes over time, and that it is the heart and personality that matter. I had to smile when I heard that. Wouldn't it be good if all young men felt the same way?

***

Going back to Roald Dahl's quote...

To all the people in the world who have good thoughts, including you Robert, I salute you, for you truly are the beautiful people in the world. 

www.jennywoolsey.com

Promoting RHP

 P is for Promoting Ride High Pineapple

I couldn't pass up the opportunity to promote my new children's novel, Ride High Pineapple. I began writing this book officially in 2014, though there had been a few sporadic attempts before then over fifteen years; the book being partly written in numerous forms but put away for another day. Never ever finished. Why? Because the subject matter of Ride High Pineapple - not the pineapple part, as I love pineapples - was too close to home.

You see the main character, 13-year-old Issy Burgess has something that I have. Something that I grew up being embarrassed and ashamed about; something that I hated talking about; something that would give me panic attacks if people questioned me about it; something that affected my self-esteem and self-worth and led me on a series of destructive paths in my teenage and young adult years; something growing up that I wished I hadn't been born with. And something two of my children were also born with.

What was it?

It was having a face that was different, labelled initially as 'Crouzon Disease', caused by a rare genetic mutation of a chromosome. This change in the chromosome told the cells forming the bones of the skull and face to stop growing too early.

In a 1977 Australian Women's Weekly magazine article a child with this syndrome was described as having a 'grotesque' deformity. At the time I was nine years-old and I thought I was more severe than that child - so what did that make me? 

Being born with this syndrome (at some stage it was renamed from being a disease to a syndrome), directed my life. It affected the happiness of my childhood. It affected how people treated me. People thought that they had the right to pass their judgements and prejudices onto me. I was different and that wasn't okay. It affected my personality. It affected the decisions I made in my life. It also has led me to write this book and be an advocate for facial differences, which is a positive thing.

In Ride High Pineapple, Issy Burgess, the protagonist (main character), was born with Crouzon syndrome.

And I am here to tell you, that it is okay to be different. It is okay to be born with a face that has grown in a different way, no matter what other people may think or say. 

I wish this book had been around when I was a teenager. 

So why did I write this book?

The main reason was because there was no other book in the world with the main character having my syndrome. There is the book Wonder by R.J. Palacio (http://www.randomhouse.com.au/books/rj-palacio/wonder-9780552565974.aspx) but it is a very different story and it isn't written by an author who knows what it's like to be born with a craniofacial syndrome. I truly believe that unless you walk the walk you can't possibly know what it's like to be born with a face that is considered 'abnormal' or 'deformed'.

On my re-working of one of the early manuscripts of Ride High Pineapple, I added another dimension of myself to Issy. Something I knew I had but didn't have a name for - Generalised Anxiety Disorder. I was only diagnosed in 2013, in my 40s, after suffering with it since a child. So as a good writer does and with lots of awareness happening at the moment about mental illness, I gave Issy this as well. In the book all sorts of things stress her out and give her symptoms.

So what's all that got to do with pineapples? Well I want you to read Ride High Pineapple, to find out. But some hints are:  Pineapples are tough on the outside; not many things can penetrate the prickly thick barbs. Pineapples are strong. Pineapples have a crown on top. Pineapples are sweet on the inside.  

Some other interesting facts about Ride High Pineapple.

The story is written as a journal. It is raw, honest and gutsy.  The characters in the story are fictitious but there are parts of the story that are factual.
For example:

*Issy gives a speech to her Year Nine class. This speech was based on the speech my daughter presented to her Year Eight class to explain her face. I changed it to suit the story.

*At the time of writing the novel, my daughter loved skateboarding, so this was the influence for the sport. She also had an accident on her board, face planting on the concrete. Because of her facial surgeries we had to take her to the hospital to make sure her nose wasn't broken or damage had been done to the bones in her face.

* The medical and hospital information is all true, based on my own and my children's experiences.

So I would love your support in helping to promote Ride High Pineapple. Let's be partners! Please spread the word about my book and  buy a book or download the ebook.

RRP paperback $15 AUD
RP ebook $4.14 AUD
Postage within Australia is $5

It's available at:

Amazon.com

Ebay.com.au

Direct bank deposit for Australian customers -
bsb: 062692  account no: 27847742

Hear some of my story in my Ride High Pineapple book launch speech