Wednesday, 14 August 2019

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.

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.

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

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