A mirror is held up to society – will we like what we see?

Growing Up Disabled in Australia Edited by Carly Findlay OAM

Black Inc. RRP $29.99

FIVE spoons

Image description: The image above is the official book cover for Growing Up Disabled in Australia. It has a cross hatching of colour, predominantly pink and yellow on blue. The title is in white block lettering, and the wording at the bottom is in yellow block lettering and says – edited by Carly Findlay.

 
This anthology was due to be released in June 2020, but the COVID-19 pandemic has shifted this to February 2021.

 

 

WHY YOU SHOULD READ IT…

 
This anthology has forty six lived experiences for you to read… to devour. Forty seven if you include Carly’s introduction. You can have forty seven new levels of insight into what it is like to live with disability and/ or chronic illness.

 
It’s about time.

 
Myriad people, groups, and disabilities are represented; the intersecting element of disability affected each person differently depending on the ways society found to add barriers to their lives. All reverberate the message: let us speak, let us own the narrative and create an identity within it, let us help you become more conscious of a life that has been ignored by society, let us challenge and defy the identities that have been built for us, and let us share with you the wonder of our lives.

 
It is uniquely Australian. The vernacular is evident, and is cross-sectioned with pop culture references and language formed in the crucible of disability. There are those born with their disability, and those who acquired it. There are those who have been labelled disabled all their lives and had to live with the associated low expectations of others, and those who wrenched the moniker from the world – redefining the restrictive nature of disability to be the attitudes one deals with. One of the best aspects of the anthology is way it reflects the multicultural changes seen in Australia, and showcases diverse generational, and socio-economic subgroups that, together, represent an Australian identity. The diversity of life is no barrier to the misguided thinking, the accidental insult, the thoughtless – or wilful – ignorance of the world in which the authors live, and it is evident that this is the most disabling aspect of people’s lives.

 
Growing Up Disabled in Australia holds a mirror up to the reader. Sometimes I saw my own thoughts reflected, other times I saw the country, the society in which I lived, shown as it evolved over time – shown as it struggled to really understand what it was doing to people under the semblance of care. The reader is challenged to see the role historical milestones, and grave travesties of policy,  have had in further hampering people’s lives – how culture, sexuality, age and gender all alter the trajectory of disability. The authors share their grief, their shame, their anger. They also share their joy, their spirit, their tenacity, and it is this tenacity that grips the reader and asks them to face what role society, and the people within it, have had in creating, or hindering, this narrative. It is this challenge that prevails, and is the reason why you should read this book.

 

 

Australia has a long way to go, and this anthology will be a part of the change we needed. Thank you Carly for bringing all the voices together so smoothly.

 
WHY I LOVED IT…

 
Early 2019 saw me frantically writing my submission for Carly Findlay’s newly pitched anthology, Growing Up Disabled in Australia, and – like the over 360 other submitters – I was keen to be involved. I had grown up with a series of congenital deformities, and the way these were treated, both physically and emotionally, affected my life during my formative years. I had never heard of the social model of disability as a child. In fact, I wasn’t even considered disabled. Instead I was labelled as someone with a “problem”, and affliction which needed to be healed, and my lived experience came to matter very little, and was broadly discussed in terms of the ways I affected my family or needed to personally improve.

 
Like many people with a disability, and not dissimilarly to those who had a disability not recognised by the community they lived in, I was incredibly alone, wondering who – if anyone – out there was like me. In the early 1990s, I learned to use a computer while at University, and enjoyed the possibility of learning more from the newly available internet, but my searches proved futile. There was no Google, and the limited scope the internet gave at that time threw up very wordy medical descriptions of the malformations I was born with. None of this did anything to make me feel less alone; the people discussed were an abstract – case studies referred to as medical anomalies, their humanity removed for the education of medical professionals who might come across a case like this in their lifetimes.

 
It wasn’t until 2013 that I finally started to see Facebook groups for people with my particular disability. I was 38 years old and finally ‘met’ people who knew about my disability, and two months shy of 39 when I met people with my disability in real life for the first time. The six of us, four children and two adults, had never met before, and had never met anyone like us before, and the significance of the moment was not lost on me. I was finally seeing myself represented in real people; saw them being parented, saw them living. The change in me that day was profound.

 
While I do not want to dismiss the absolute wealth of information I was able to glean from the parents of these children, it was meeting other adults, and learning what was a normal part of my lived experience that helped so much more than can ever be detailed in words. All that I had been taught, about what I should or could feel, was wrong. The sensations I was told to wait for, to expect were not a part of what I could experience, and it took others who lived like me to teach me this. Yet this perspective was so hard to find, so hard to elevate as the true experience of the deformity and its impact on life. Instead, all I could find was the medical point of view, or the parenting narrative, the one where a newly devastated parent tells the world of their child’s diagnosis, and details how it is to live this life – a life of disability and chronic illness. That was the prevailing narrative I could read, that children born like me can read, the one the world accepted as more truthful than mine. The parenting a disabled or chronically ill child trope is alive and well, driven by the internet and the rise of the ‘mummy blogger’ – someone who shares her whole life, and that of her family, with everyone. It is only recently that people have started to question this genre, asking about the privacy of the children whose lives are shared, but when it comes to the disabled or ill child, the narrative abounds. The tales are a protected genre, excused as stories that reduce shame and educate others, stories that allow the disability to become (more) well known in the community; all at the expense of the child. The guise is the new emperor wearing no clothes.

 
The lived experience narrative is hard to come across. Too often the story of disability is told by people who ‘research’ the disability or illness – never having lived it themselves. In lieu of that, the quasi disabled narrative is told, that of parenting a disabled child and labelled as the lived experience narrative. Parenting someone with the disability or illness is not the lived experience, yet this message is so hard for many to hear, and is wildly confronting to many, so much so that adults who have the lived experience are too often silenced by those parenting the person with the disability or illness. This silencing happens in two ways. The overt shutting down and demanding of silence happens all too regularly in forums and on social media posts, but the covert, the more subtle and damaging is the re-sharing of the parent narrative at the expense of the lived experience narrative. The people with the lived experience, all too often, find their writing, their stories, their attempts at educating, not shared by friends – all while seeing the parenting narrative shared widely and lauded as profound, as eye-opening … as the lived experience.

 
I first saw elements of my lived experienced detailed in Carly’s memoir ‘Say Hello’ (Harper Collins Publishers RRP $32.99), and found myself realising other people were treated in a similar way to me. While confronting, it was also comforting – I felt less alone, our actual physical disabilities being extremely different, the social impact of our disabilities too often converging. The anthology ‘Growing Up Disabled in Australia’ showed me this again, and I knew I wanted others to understand this experience.

 

 

This is a book everyone needs to read, and share widely. It is time the lived experience was told.

 

 

Christi Bezeem.

 

The Gravitas of their Grief

This week I read an article that extolled the virtues of a podcast. As a lover of podcasts, I was eager to read more about a potential new show to add to my playlist.

It was disheartening, infantilising … enraging … to read the authors’ of the podcast were parents of disabled children who saw the narrative of the ‘special needs parent’ as something that didn’t get enough attention. They believed their lived experience was one ignored by society, and went on to describe living with a disabled child as a type of grief.

The above is a screen shot of the article (link available above and here). The article also said:

I was so saddened to read that – to read the perception of silence for parents of disabled children, because my experience is vastly different. I have found that narrative to be the most prevailing, the most published and shared, the one I’ve heard all my life. It was a narrative put before mine, a narrative celebrated as heroic and deserving of praise, while my lived experience was scary, too negative, and one that would never represent their own children’s lives.

I’d heard it too often, and let it silence my story.

This time I decided to speak up instead. I am speaking up because the weight of their words does linger and pervade. It changes our lives, and it’s time people realised.

Here is my spoken word poem (click on the picture for the you tube link).

 

The gravitas of their grief

“I have grief,” they say…
“and I should be able to share it.”

I am the grief/ I am the cause/ I bring the grief / and I am silenced because I sadden people/ I must not to talk about my life because it scares people

“Think of your parents,” they say. “Think of what your birth did to them, consider the impact on their marriage, their lives … their relationship – having a child like you is hard.”

I think /I think and think and think / I’ve been thinking about how hard I’ve made everyone’s lives and I feel guilty / I feel bad / I wish I was different – better / not the bringer of grief

“Why don’t you do more to help your parents? You know it’s a burden to raise a child like you? Why don’t you do more? Surely you can try harder? Can’t you see that sadness in their eyes? Can’t you see the angst you caused?”

So I do more / I accept the beating and beltings as penance for the grief I bring / I hide my shame, and I come to realise I am not worthy of being parented / I try so hard to stop being a burden / but it is my nature / I am the grief

“Don’t talk of your sadness,” they remind me. “You make us feel bad. I’ve tried to raise you, but you were hard to raise. You wreaked my life and no-one sees my sacrifices for you. No-one listens to my story. My life is harder now with you. I have to work around you so don’t talk to me about stress and pain. You don’t know what that is.”

I am stress /I am unworthy / I shouldn’t be alive / I have hurt my family / I have damaged them /I hear this / Their voices – these apparent silent voices have been absorbed into my psyche and it’s all I hear / I am the grief.

“Let me speak,” they say. “I know this life. I birthed this life.”

I lived this life, but know that my experience isn’t what they want to hear / birthing the life is harder than living the life

“You ruined this family,” they said. The poisonous tirade dragged me to a psychologist who was tasked with making me realise I needed to be different, better, and try harder at not being who I was. Try harder and not foul up their lives so much.

The little voice, tiny at first, said no / I am worthy / but the louder one reminded me – / I was the grief

“You should be grateful for your husband,” they said. “How does she pleasure her husband?” they scoffed. “What does she offer her husband?” they wrote?

I have tricked him into marrying me I realised / If he knew me – truly knew me like they all did – he wouldn’t have married me / I kept my silence

“We never thought you could get pregnant,” they said. “What if it turns out like you?” they asked.

I don’t know I said / I didn’t want to birth the grief / but the little voice in my head reminded me that I was more than grief / Still I worried / A body as sullied as mine could only bring grief

“Don’t speak of your grief,” they said. “Ours is worse… ours needs more support.”

Mine is worse I think / how much worse can it get to hear – everyday – that you are not loved

“We didn’t mean it that way,” they said. “You’ve taken it too personally, and twisted what we meant. Our life is hard, and we have no forum with which to voice it. We need to be allowed to speak from the rooftops. Stop speaking of your life – stop trying to make us look bad. Stop bringing this new type of grief.”

 
I am not grief I think / but their voice reverberates in my head / you bring the grief and we haven’t been able to tell anyone

 

Christi Bezeem

Voices from adolescence

Two weeks ago my daughter turned thirteen.

The Friday before her birthday I spoke to my father and asked if he would like to come for cake. He and I have an odd relationship, stemming from his treatment from me in the past, and my inability to cut him from my life.

I’ve been led to believe it is classic abused child behaviour, yet that is neither here not there.

I find it hard to listen to his parenting advice, especially given how he parented me, and on this occasion, he told me that his experience of parenting teenagers made him realise that teenagers weren’t that nice.

I was one of the teenagers he was referring to, and unlike the usually jovial commentary from grandparents who tell their now adult offspring that parenting is a hard gig, his comments come off as unbelievably tone deaf and hurtful.

And so I write.

This one is a spoken word poem. Content and language warning. However, I unashamedly write about my life, because Australia has a problem with family violence, a nd it’s a problem that is not going away, nor is it a problem that is readily acknowledged. I hope this piece can become a part of the narrative that changes how Australian look at family violence, because this is an issue that is unrelenting, and sadly, never-ending.

The poem is here – at my newly created YouTube channel

 

Accessibility:

Voices from adolescence

“In my experience,” he says with a snigger, “parenting teenagers is hard”.
He was my parent.
I was his teenager.
I remember his words about how hard I was to parent .
He said it like this – sneering – “you’re a cunt of a child and I wish you’d never been born”.
He said it as he threw my school bag at me and split my head open, then sent me to bed with a head injury.
And I called him a cunt in my head because I was only twelve, and I didn’t swear at adults yet.
And I wasn’t a difficult teenager yet.
“You bloody kids were so hard to control,” he muses. His teenagers were unruly in their quest for his love, so unruly in fact he threw one off the back patio when the child back – chatted.
That wasn’t me, and I feel ashamed that I was relieved and grateful for my safety in that instant.
“Teenagers are so hard to parent,” he reminds me, warning me that my child will soon morph into a back-chatting, aggressive, yelling, bitch who will tell her parent how to raise children.
And all I can remember is the teenage me warning my siblings to hide or stay put while I went out to placate his rage, and when that didn’t work, and the rage instead built inside me I could only yell at him that he was a terrible parent – and he retaliated by calling me a bitch, because those are the words you use as a parent who is raising a difficult child.
Bitch – the age old fucking pejorative epithet used to shut women up. Even teenage ones… especially teenage ones.
And I never shut up, I was never silent. And I was difficult to parent.
And I parented those who lived with me while remaining difficult to parent.
So I agree with him – yes, I say, teenagers are difficult to parent, and I say goodbye, and close the conversation.
In the silence, the sting of his words cut again, like they did in the past, and I worry that I will parent like he did, even though I know I do not.
It seems that I am still difficult to parent, because I continue to disagree with him, and he still thinks of me as a bitch while I think of him as a cunt.

 

Christi Bezeem.

 

 

 

 

 

The knowledge of Christmas

Part of my personal history involves a very painful wrenching to and fro between religions resulting in Christmas being cancelled, people dying, and – on my part-  a thorough investigation into where, when and how all these beliefs came from anyway. I knew that Christmas was an appropriation of pagan rituals, I knew (because of a Dutch mother) of Sinterklaas, and  the Feast of St. Nicholas, and also knew about Coca- Cola’s influence (although I couldn’t tell you when I learnt that tit bit).

All of this culminates in the confusing situation of having a child who believes in Santa, a mother who has mixed memories of Christmas, and a household that doesn’t teach Christianity.

Many households are secular in their beliefs, and many propagate the legend of Santa, enjoying the gift giving opportunities his story offers. However, the truth needs to be told eventually, and that year is now for me.

When faced with this dilemma, many parents write the increasingly popular “is Santa real?” type letters. I couldn’t do that, because it didn’t tell the whole story, the history of the legend, the beliefs, the practices so entrenched in our lives – that the letter itself felt untruthful. Instead, I decided to offer my daughter the knowledge of Christmas, and it will be a story I will read to her, explain, and detail how the Christmases with her have provided me with new memories to replace the tainted visions in my head.

I want her to understand the way humans use stories to create memories and experiences, and that her experience of Christmas is a wonderful one, and is a gift she can offer others as she grows.

I printed off the story, and added pictures from all of her Christmases so far, and I hope she will like this gift of knowledge I offer her.

The story is below…

The story of Christmas.

The story of Christmas is an evolving one, and it has changed so much over the centuries. Your memories of Christmas are only a small part of the whole picture.

 
The word Christmas is a compound word – originally being Christ’s Mass – a Christian service held in honour of Christ’s birth. Christ is another name for Jesus, and followers of Christ are called Christians. That’s why so many people say that Christmas is really only for Jesus, and to celebrate other things is wrong.

 
However, those people have forgotten, or are completely unware of the history of Christmas. Some of it is sad, most of it is interesting, and all of it makes you realise that humans just like to have special days of celebration.

 

 

Long before scientific knowledge guided our thinking, people knew the world through nature. They understood the sun rising and setting, the times when animals would give birth, and when crops would grow most effectively. These same people understood that as the days grew warmer, the sunlight stayed for much longer, and the opposite was true in the colder months. They knew the days on our planet were a cycle, from hot to cool, to cold and back to warm again. While they didn’t understand the universe and solar system, the axis of the Earth, or any of the other aspects that made those things happen, they did know those cycles to be true, so celebrated them accordingly.

 
Most of our ancestors lived in Europe, and the midwinter solstice was on December the 21st or thereabouts. This is where the Christmas traditions come from, and this time was special to people then as it marked the time when the winter days would start to get warmer and move into spring. Spring meant new birth of animals and better crops, so was seen as an important time. Mid-winter was a good time to celebrate too, because the goods that had been harvested in autumn were plentiful, and families could stay warm near fires. Like most people who don’t understand the science of things, the people at the time made up stories to help them make sense of the world. All of these pre-Christian beliefs were called pagan beliefs, and the people were considered Pagans, a word used derogatively to describe people who didn’t follow Christianity.

 
In Scandinavia, the Norse would feast for twelve days from around the 21st of December. They feasted around a large burning log they called a Yule Log, which was the largest log they could find. The festivities usually ended as soon as the log burned out.

 
Nearby, the Germanic people believed in a god called Oden (or Woden). They thought he flew through the air at night-time on the winter solstice and decided who would prosper or perish. They were so scared of him they stayed indoors to stay safe.

 
Evergreen trees symbolised eternal life for these people, so they liked to bring in a tree and decorate it with fruits and eventually candles. They often decorated their houses with evergreen greenery to offset the lack of greenery elsewhere. Another part of the tradition was to place a tree in the barn as a place for birds to rest.

 

As you can see some of our current Christmas traditions stem from those early practices.
Before Christianity took hold in Rome, the Romans used to celebrate Saturnalia on December the 19th – a time to thank the god of farming and agriculture in the week leading up to the winter solstice. This celebration of the god Saturn, was a hedonistic time of partying and lack of social order where the slaves became the masters, and the citizens offered gifts to the emperor to garner favour.

 
Some people also celebrated the birthday of the god of the sun, Mithra – who was an infant god, on December the 25th. This belief in Mithra came from eastern Persia (now Iran), and shows how many early religions have merged to suit the believers.

 
Christianity was a new religion in the first few centuries of the Common Era (CE), and early Christians celebrated the death of Jesus more than his birth. This death was at the time we now see as Easter, and, like Christmas, was a pagan time that was adjusted to suit Christian needs. After approximately 400 years of Christianity at around 340 CE, The Roman pope, Pope Julius I, chose December the 25th as the date of Jesus’ birth as no-one really knew when he was born. They had previously thought it to be on other dates such as the 6th of January, or a time in March, but choosing December the 25th allowed the pope to amalgamate the Saturnalia festival with Christmas, and the people would be happy because the partying ways of Saturnalia continued as a part of Christmas.

 
Saturnalia doesn’t have a squeaky clean history. While some of the traditions are clearly linked to Christmas, such as the naked singing in the streets is link to modern groups walking from house to house singing Christmas Carols (luckily not in the nude), the festival is also very dark. Many Christians believed that it was the Jewish people who killed Jesus, so feel the need to punish Jews. There has been ongoing anti-Semitism over the course of history, and some people have used these festivals as a way to continue their xenophobic and prejudiced ways. In 1466 CE, after feeding Jews a large feast, Pope Paul II made them run naked through the streets to be mocked and jeered by the other citizens. Later, in the 1700s and 1800s the Jewish people and their leaders (Rabbis) were made to walk the streets to have food thrown at them.

 
Over the years, many Christian Leaders started to dislike the pagan and hedonistic ways of Christmas celebrations, so shunned them, and insisted people go to church. There was even a time when Christmas celebrations were banned for being too pagan, and people became quite upset at this. Over time, people took the celebrations and traditions back, either by moving from the area where the celebrations were banned, ignoring the bans, or waiting for those rule maker’s time to be complete before starting the celebrations again. In reality, people who say those who do not celebrate the birth of Jesus at Christmas-time are wrong, don’t fully understand the scope and history of the celebrations; it really wasn’t about Jesus at all in the initial stages. Christmas as we know it today, is an amalgam of the early pagan rituals and some Christian ideals, all cemented into lore by literature, story-telling and advertising. It is important for people now-a-days because it is a magical way to make children feel happy, and allow us to shower children with love and gifts.

 
One of the main parts of the modern Christmas lore is Santa Claus. He is based on a real man called Saint Nicholas. Saint Nicholas was a Bishop from Turkey who looked after the poor and sick, and sometimes gave gifts to children. He died on December the 6th, and in countries such as Holland and Germany, gift giving continues on the feast day of Saint Nicholas. He was originally known as Nicholas of Myra and was named a saint in the tenth century CE by the Roman Catholic Church. There were many stories of his generosity, but the main one was of him helping a poor father out with money for his daughters, and the money was thrown through the window or down the chimney, landing in stockings set to dry on the hearth. His followers celebrated and honoured his life on the anniversary of his death by giving out gifts to children. This is a tradition that continues in Holland, and is a story that spread around the world as Dutch people moved to new countries. The Dutch called him Sinterklaas, and this was where the name Santa Claus came from.

 
As the ideas spread, they merged with the story of Woden/ Oden, and became a part of the Christmas celebration. When some Christian leaders cancelled the pagan aspects of Christmas, people became upset and continued to give gifts to their children, using some aspects of the story of Saint Nicholas to create a figure called Father Christmas or Old Man Christmas. Some people even said it was Jesus himself who left gifts for the children. When Christmas celebrations became acceptable again the stories again merged, and many people know of Santa Claus as Jolly Saint Nick or Father Christmas.

 

 

Modern and secular Christmas has evolved from all of this, and Santa Claus has become a part of our lives through literature written in the 1800s. In 1822, Dr. Clement Moore wrote the poem A visit from Saint Nicholas, a story now known as ‘Twas a night before Christmas (based on the first line of the poem). Moore added eight reindeer to the story of Saint Nicholas. Charles Dickens, in 1843 wrote the novel, A Christmas Carol, the story of a rich and nasty man who learned to be kind and giving at Christmas-time, and cemented the concept of being kind to the poor and sick at this time.

 
The way we saw Saint Nicholas, and later Santa Claus was mainly due to the illustrations made by Thomas Nast for an American Magazine – Harper’s Weekly. Nast drew for the magazine between 1862 and 1886, and added a home at the North Pole, a workshop full of elves making toys, and a naughty and nice list. Some of these ideas descend directly from the Scandinavian beliefs in Woden, and Nast based his pictures on the description of Saint Nicholas as a jolly fat man made by Moore.

 
Moore and Nast were both in New York, and Christmas traditions were heavily influenced by the Dutch, who moved there and called the land New Amsterdam. When the British colonised the area, they renamed it New York, but the Dutch traditions of Sinterklaas remained and became the modern Santa Claus. While Moore and Nast wrote about, or drew, Santa Claus, the character wasn’t always in red as he is today. The original Saint Nicholas was often depicted in red bishop’s robes, but he was also shown in robes that were brown or green, and Nast even drew him in the American Stars and Stripes colouring at times. It wasn’t until 1931 that Santa Claus was really well known as wearing red.

 
From the 1920s, the Coca Cola Corporation had been depicting Santa Claus in the advertisements, and in 1931 asked artist Haddon Sundblom to draw a coke drinking Santa, and he replaced the pipe Nast often drew Santa holding with a bottle of Coca Cola. Sundblom modelled Santa Claus on a friend of his, but drew heavily from the ideas suggested by Moore and Nast. The picture from 1931 is the most enduring picture of Santa Claus and impacted how the character is seen today. Sundblom continued to draw for Coca Cola and his final version of a Coke drinking Santa was in 1964.

 

Most parents wrap up a few gifts to be from Santa Claus, just so the memories and traditions of Sinterklaas can continue. Sometimes in this world there are so many things to worry about, that it is nice to imagine a kind old soul delivering gifts to wonderful children. This is a special thing that adults like to do for children.

 
Not everyone is aware of all of the true origins of Christmas, and when you become aware of the history of the festival, it is easy to see how all the ideas have merged into what we know as Christmas today. For many people, Christmas is a happy time, full of celebration and frivolity, but for some it isn’t so nice.

 
Many people have soured memories of Christmas, and that is why so many parents try their hardest to make Christmas special for their children. Some people don’t have enough money to buy things for Christmas, and feel the pressure from society to have lots of things to give to other people.

 
My family struggles with Christmas for some of these reasons. The other reason is the religious group they were in. This meant that there were many years when they were banned from seeing their cousins because of clashing religious beliefs, and due to incredibly strict interpretations of the Bible. By 1984 Christmas was seen as a pagan festival of worship. Previously, Christmas was a day of fun and some of the best memories of the day include the lounge room floor covered in lollies. While the gifts were second-hand, they were given with love, and all of the children enjoyed the day. The part of the day most looked forward to was a visit to their Aunty B’s house, but this too, soon morphed into a worrisome affair as the sibling adults, B and M, would make remarks to each other throughout the day. This angst was not present in the years of 1984 and ’85, because visits to the P household were banned by this stage. Fun-filled memories of Christmas were replaced with aggressive removal of Christmas trees and decorations, items that were burned in the backyard incinerator in the hope of expelling the devil from these items. To placate the upset children, the adults cited the bible, namely the Exodus chapter from the Old Testament, which told stories of a wrathful God who became angry at his people who worshiped false gods. The tree was labelled a false god, and thrust outside. The years of religious fervour started to abate in 1986, but only after the death of Mary, your maternal Oma. That Christmas we were sent to Tasmania and had some sense of normality back, but the years that followed were difficult, often due to lack of funds, and stress associated with surviving as a family without an income. The idea of Santa wasn’t there because money didn’t allow it, and there were some Christmases when the family relied on help from others. Each year one of us was sent to Tasmania for Christmas, separating us from each other, and in 1989, while we could stay with each other, we were made to travel to another family to spend Christmas with them. This prolonged sadness and stress at Christmas-time has left us with lasting traumatic memories. The best way to overcome these is, luckily, to create new memories – which have been made with you.

 
The W family always spent Christmas together with their Oma and Opa who would come to their house every Christmas. The parents and grandparents all liked to pretend that Santa had visited all the homes and left gifts. Despite loving Christmas, your dad, never liked Santa, and was always scared of him.

 
You were five and a half weeks old at your first Christmas, and despite it being summer, we had a hail storm that made the garden and deck white as snow. It was very cold that day, and everyone wanted a cuddle with you.

 
It wasn’t really until your third Christmas that you knew what was going on – you came out and delighted at the lounge filled with gifts, exclaiming, “What’s this?!” at everything you found. You called it Crimpas then, and wondered what “Father Crimpas” had brought you.

 
You loved setting out your stockings and, took great care to do so. In our first home you liked to hang them from the fire guard, but when we moved to Emerald, you enjoyed them dangling from the fireplace. We make sure everyone has a stocking, even the cats – Skye and Orbit.

 
We have many Christmas traditions that we’ve tried to make a part of your life. You love thinking about how Santa will come and visit you, and you write such sweet things to him – it really shows how precious you are. You also started to make a Lego display for Santa, and you’d leave it on the fireplace. The area was a beautiful display every year. We have delighted in the way you have enjoyed all the Christmas magic, and we glad that we could make this happen for you.

 
We’ve started to go to The Carols by Candlelight rehearsal in Melbourne on the 23rd of December. You also loved going to the school carols too, and wore your best Christmas dress or T-Shirt for the occasion. It was all a part of the lead up to Christmas, and you would start making things for Christmas in the month leading up to the special day. Some of the things you love to make are the gift tags for presents, and any decorations you make are always given a prideful place on the tree or in the house. We love them all – your part in our Christmas joy is evident, and we love watching you happily make and bake, creating for the day.

 
As you get older, these things won’t change. We will continue with the traditions, and will keep the magic alive for you. You might be a little sad to see the story of Christmas came from a lot of ideas from many different countries and times in history, but in reality, Christmas is what you and your family make it to be. Christmas with you has been magic, and your spirit and joy has helped bring the magic of Christmas back.
It is important that you understand the history of Christmas and its traditions, but only tell younger children if you know they are ready to hear the story. Sometimes people are mean and like to tell children, just so they can be the ones to break the magic. Other times some people overdo Christmas, and make children who don’t receive very much wonder why there is unfairness in the day. It is better to be the kind person and remember that all of the Christmas ideas came from a time when the people recognised the wondrous aspects of the world and celebrated them. Sinterklaas was a real man, whose memory lives on in the actions of mums and dads who are able to leave special gifts for their child.

 
You have been privileged enough to have joyous Christmases every year, so the new gift we offer you is knowledge and trust. We offer you a chance to be a keeper of the knowledge, and build the magic for others over your life. Your part in the magic has changed, but Christmas will always be a magical time for you – our job is to make it so. One day you’ll have a much bigger part in creating the magic, but for the time being just enjoy being a child who loves Christmas.

 

Extra reading and References
http://stnicholasnp.weebly.com/who-canonized-stnicholas.html
https://en.wikipedia.org/wiki/Yule
https://rcg.org/realtruth/articles/169-ttooc.html
https://stores.renstore.com/history-and-traditions/yule-history-and-origins
https://time.com/5068085/st-nicholas-santa-history/

Who Was St. Nicholas?

https://www.biography.com/religious-figure/saint-nicholas
https://www.britannica.com/biography/Saint-Nicholas
https://www.britannica.com/plant/Christmas-tree
https://www.britannica.com/topic/Christmas
https://www.britannica.com/topic/Santa-Claus
https://www.coca-colacompany.com/stories/coke-lore-santa-claus
https://www.crossway.org/articles/10-things-you-should-know-about-st-nicholas/
https://www.encyclopedia.com/people/history/russian-soviet-and-cis-history-biographies/saint-nicholas
https://www.history.com/topics/christmas/history-of-christmas
https://www.history.com/topics/christmas/santa-claus
https://www.independent.co.uk/news/long_reads/dark-side-christmas-saturnalia-christmas-carol-dickens-norse-mythology-festive-traditions-a8112341.html
https://www.independent.co.uk/news/long_reads/dark-side-christmas-saturnalia-christmas-carol-dickens-norse-mythology-festive-traditions-a8112341.html
https://www.livescience.com/25779-christmas-traditions-history-paganism.html
https://www.nationalgeographic.com/news/2018/12/131219-santa-claus-origin-history-christmas-facts-st-nicholas/
https://www.simpletoremember.com/vitals/Christmas_TheRealStory.htm
https://www.stnicholascenter.org/who-is-st-nicholas/real-saint
https://www.whychristmas.com/customs/fatherchristmas.shtml

 

 

 

 

Final speech to graduates

The VCE English exam is next week! The week just gone saw me celebrating the success of the year with my class, culminating in a Valedictory dinner on Thursday night. Last Monday I was asked to speak to the graduates and the speech I gave is below.

I was also honoured by my class, who asked me to sit in the middle of the dance floor at Valedictory, and they each came and put a lolly lei over my neck. They finished with a crown made from chocolate blocks. Teaching year 12 is a tough gig, but the end always makes it worthwhile.

The picture is a candid shot taken by a colleague (thanks Suz!)

***

For most of you, the last 13 years has been a series of both achievements and setbacks. The achievements, however, have probably been cast aside, and your mind focuses on what you could or should have done better. Some of you even have a little voice in your head telling you you’re not clever enough, organised enough or capable enough to do any better than what you have done, let alone do better again in the upcoming exams. Some of you look at others in the room as the epitome of greatness. Admittedly there are probably some of you who look in the mirror every day and see perfection, and I’m so glad you do, but this is really only reinforcing the same mindset – that you are done – you are at the level you will always be, and there is no more improvement to be had in the next phase of your live.

 
The path to today’s assembly will look easier with time – you will look back on today and see your time at school as a blip in the eye. With each passing day you will start to think back about what could have been, but if those sci-fi time travel movies have shown us anything it is that you can’t go back in time. You have only the future left to go, and any mistakes or regrets you have for the past can only be amended in the future. And that’s the beauty of this life we live in Australia – each and every one of you has the opportunity to turn your decisions into something great, and make some shifts to ensure the path is not set.

 
For you, it’s the end of an era. For us, it is the same old bitter sweet pattern we’ve seen before. We invest our time, patience and love into you, knowing you are worthwhile, knowing you will make a valuable contribution to our world. We feel sad, because like many before you, some of you don’t yet see the value you can offer to the world, your focus too clouded by fear of the upcoming exams. We also feel sad because we won’t see you much anymore, some of you will move on to much brighter and greater things, with too little time for us, and we ourselves will be busy training the next year level, and the next, to be anything like you – our beautiful students whom we love and admire, and wish the most for. We are also so very proud of you, and are grateful and delighted with the progress you’ve made both with your achievements and work ethic over the year. In this bittersweet moment of time we have only a few small things left to ask of you.
The next week and a half before the exams will be full of priceless opportunities for memories. Take the time to make these – don’t shun the allocated social time, and make sure you take the picture, sit in the group, listen to the story, and savour the memory. Enjoy the celebrations at Gumbuya Park and at Val on Thursday. When your alarm goes off on Wednesday – get up, drag yourself here by 8am, because this last breakfast with us will become more meaningful as each day after it dawns. This week is full of firsts, lasts and onlys – make the most of all of them – take them in, eat them up and celebrate together. Allow others in, tell someone how great they are, remind others of their worth – it is some of these relationship memories that will be the most significant to you in the future, so don’t ignore them now.

 
Then, when the dust settles, and you rise on Friday, Take a big breath and think to yourself – you have actually finished year 12. You’ve actually passed, and that mountainous hurdle has been surpassed. Acknowledge what an achievement that has been, reflect on your next steps, and knuckle down to the business of getting your score. That’s right – it’s time. From Friday it’s time to think about the numbers, not time to read heartfelt pieces talking about how ATAR doesn’t matter, and you can do well even though you didn’t get your desired scores, because as true as these pieces may be – you won’t be convinced by them if you don’t try and get the best number possible for each subject. And in truth, those pieces – that message is for later – when you’ve put 100% effort in, and if – for some reason you need that message then – we will be there to help you hear it. Now is the time for effort. Now is the time to make your lofty goals, to see the 40s, to see the high scores and be realistic about how much work is needed to get there. We know you’re ready – you know you’re ready. Every minute spent in preparation for the exams is time well spent. Timetable yourself, pace yourself, seek our advice, come to our sessions and heed our guidance. Set the time aside to prepare for your exams, knowing this time is aiming for those scores. Don’t leave anything to regret, don’t leave anything in the tank that should have been spent, because later on you won’t be able to return to the past and change it. If you look into your past now and see times when you could have, when you should have pushed more, now is the time to be honest with yourself and be firm in your commitment to yourself and your goals. Now is the time to commit to us, and show us that our time and love was well spent.

 

That is all we ask – that in the next month of exams and exam preparation you remember the numbers you want – you remember the effort you and we have put in.

 

Match and exceed this time. Immense change can happen in the next week and a bit – we know you can do it – go out and make us proud.

Crossing the threshold of the Bower

 

The male Satin Bowerbird creates a structure from sticks called a Bower. He decorates this with blue items found in the human world, and hopes to attract a mate. Once a female is interested in the Bower, he starts a courtship dance, trying to entice her to cross the threshold of the Bower, and commit to mating with him. Increasingly, the blue items are discarded pieces of plastic, and have been known to cause damage to the birds when they get caught in them.

The female Bowerbird is beguiled by the prettiness, and I’ve decided to use this bird, and its behaviours, as an allegory for a marriage based on subterfuge and trickery; one that results in ongoing Domestic Violence. I was especially interested in portraying financial abuse and ongoing emotional abuse, and have watched someone close to me go through this experience. I’d already written the poem, with references to the Australian bank notes with the colour liked by the Bowerbird, when I found the National Geographic footage showing the bird using the notes to decorate his Bower. It was a crossover of bird and human that confirmed for me the use of the bird as a metaphor.

To think that money was being used as an enticement, and decorative element in nature, highlighted the depth money can entrap us.

Violence against women and children is endemic in Australia. Destroy the Joint, is an Australian research organisation that tracks the number of women killed in violent means, and they have the current count at 44. Five Australian women have died in the last seven days – all victims of apparent family violence. It is also well known that the most dangerous time for a woman in a domestic violence relationship is when she commits to leaving. With that in mind, I dedicate this poem to those who have not yet been able to leave, and to those who have survived the process of extricating themselves from the cage.

 

Crossing the threshold of the Bower.

If you looked closely the divot could be seen.

 

A subtle trap for her; a trap draped in tinsel and string.
A cage adorned with diamonds and mirrors and beautiful things.

 

The trinkets – beckoning tendrils luring her to choose this place as her own – were pulsating with a hidden curse.

 

He had built this bower of false hope, with struts shackled in lies and decorated in the plasticised faces of Australian history:

 
                Dame Mary Gilmore’s silent pleading stared out and flickered in the breeze –
                she foretold that soon a child would be in chains.

                Tucked behind the structure, Melba’s green form stood there –
                an emerald coloured promise of security which called and sung like sirens         twisting truths upon the seas.

 

They had seen this dance before, had watched the generations fall within the confines, and begged her not to go.

 

Yet, she crossed the threshold – while he continued to dance in his arena, speaking of luxury and safety, beguiling her with the hue of blackened plumage.

 
Too soon this cage was dug, deeper and deeper into the ground, and higher and higher reached the frame of promised spoils.

 

An attractive prospect for the unsuspecting mate, the fledgling with gilded hopes and desires,

One who did not understand the riches and beauty the world itself offered as an alternative.

 

There, she was left alone to build a nest and nurture young.

 

And left to sit in the dusty confines of the nest, camouflaged with a carpet of laced gold.

 
How beautiful she looked when she perched within its confines.

 

She did not notice time pass by, nor did she realise the strangulating nature of the satin-twined twigs woven betwixt each other and her own little limbs.

 
“I would like to stretch my beautiful wings,” she soon requested.

 
But could not leave because she found the hole too deep, and her wings looked too prettily decorated in string.

 
So, glancing at the mirror cried, “I am happy in this pretty place,” and she felt a deep sorrow grow in her heart.

 
It was a lament that blackened the floor of her nest and grew, barbed and harsh, across the ground.

 
And she used this foul place to nurture her young, they being the only beauty she saw in her home.

 

She called to all who would listen, imploring to be rescued from this trap.

 
But when told to untangle the baubles from her wings she could not, she refused and announced that she looked pretty and it was too hard to unravel.

 
Behind her, in a shadow, the male danced and warned her of her pact, her words to others mimicking happiness and concealing the shame she felt at being tricked by his hubris-filled Bower.

 

Secretly, she would whisper her fears and grief – her wings no longer able to fly – the labyrinthine cajoling from the shadows resting neatly on her back rendering her powerless.

 
It was there she lived, in the darkened obscurity of the nest as the decorative twine rotted and weakened over time.

 
Her wings grew stronger, and she spied the bough of freedom at her doorway.

 
A tree that had grown strong beside her offered respite from the plight she was in.

 
She reached, spread her wings and flew – a decrepit mess grasping at the air – and said,

                    “I am free.”

 

Christi Bezeem.

The criminality in silence

Last week, Victoria’s Parliament passed mandatory reporting laws that would compel Catholic priests to report all incidents of child abuse to authorities, and as a mandatory reporter myself I welcome this move. It seems this is none too soon, because as late as today there is news that our own Prime Minister feels it appropriate to ask that his mentor – a man who covered up the sexual abuse of children – come on a trip to the USA with him to meet Mr. 45.
It should be easy to support these laws – not many people advocate the covering up of abuse, but too many in our society have been engaging in hand-wringing instead of proper action when faced with the abuse of children. Too many people talk about the regret and remorse on the part of the abuser, or on the part of the individual responsible for covering it up – claims of not knowing the depth of the crime abound.
We have heard from so many vested parties: the Catholic Church who talked of the sanctity of the confessional booth, law-makers and other adults who worked with abused youth – and pressed for the recommendations of the Royal Commission into the abuse of children be enacted. To many, it seemed simple – an easy yes or no, and the glaring omission of the victims’ perspective in the media offered no softening to the blows dealt by those who proffered the notion that the priests needed to keep their silence.
We all know if adults entrusted with information of abuse had spoken out there would have been less abuse. Many more abusers would have been stopped, many more people would have heard the message that our society doesn’t tolerate abuse. Children too, would have heard they were valued, that their lives and opinions mattered, and learn they could trust those who had more agency to act responsibly.
We have heard from adult victims saying that the laws must change, saying if only someone had told. Their despair at being failed by so many adults is palpable. I too have this memory, this life experience etched into my core. I was present when my abuser confessed, and I heard his reaction to the reply. I was waiting for someone to come and help me, and soon realised that I was not considered in the equation.
That is the issue – the victims are not considered when the crimes are thought of. They are rendered invisible and voiceless, and crimes that have no human face very quickly lose their level of harm.
Unfortunately, our country is filled with traumatised victims, victims who have grown to learn that society can’t be trusted with the truth, can’t be trusted with our care.
I was in year 7, and it was the end of the mid-year term break. In fact, it was the Sunday night before school opened for term three, and my mother had been dead for a little over a year. This was the night I was told that I would never be loved by a man, that I was so foul no-one would want to touch me.
I was putrid, and in 1987 amidst the heightened and unreasonable fear of HIV/AIDS I was told that I likely had it. My vagina had been sullied with shit, and any shit touching a sexual object meant instant AIDS – such was the appalling lack of knowledge of the disease known as ‘gay cancer’, along with the confusing sexualisation of teen children that resulted in me knowing I should be wanted, but certainly was not. The lack of understanding of homosexuality, coupled with a so-called untempered spread of HIV and AIDS via anal sex amongst homosexuals meant that fear of this (at this stage) death sentence was rampant. It was only just being noticed that heterosexuals were being infected, and more alarmingly for society, a lot of children who had received blood transfusions in the 1970s were also infected.
This, along with a misaligned interpretation of AIDS related anal sex and my birth defect – a recto vaginal fistula, as well as the fact that I had received blood transfusions in the 1970s, meant I was told at twelve I carried the disease. A disease that had become so prevalent in Australia among women and children the government made the scariest advertisement of all time, which while scaring all teenagers off sex seemingly forever, also resulted in a lot of people being vilified.
Childhood offered no shelter from the harsh rebukes of terrified and nasty adults.
My congenital defect was seen through a sexualised adult lens, and I was deemed untouchable and unlovable. I was told this constantly, and the blur of grief became the fog through which I was expected to navigate the world. I was told that my presence reduced the life experiences of others, and that I needed to think more of the burden I caused to my family.
As a result I worked hard to be perfect – the perfect child who raised her siblings, the perfect housekeeper, and the perfect student.
It was to no avail – the hatred felt for my tarnished form was tantamount and I could never be seen as virtuous. It is also incredibly difficult at twelve to be the perfect student, especially if one lives in a home where there is constant verbal and physical abuse, fear, poverty, and untreated grief.

 

There I landed.

 

July 1987.
A child who at 12 had already been left alone in hospital multiple times. A child who had already been beaten because of perceived indiscretions caused by her disability. A child who had watched her mother die, and who had heard herself and her siblings blamed for her death due to a lack of faith in God. A child who had already been sent into an informal foster care placement with only one other sibling, having been separated from the younger two for months on end. A child who received no medical care for her disability.
It was not possible to be perfect, yet the expectation remained.
And so, after one semester at high school when I had received some As, a few Bs and Ds, and some terrible F and Es, I had left my report card in my school bag. In a survival mode panic I had removed some of the worst pages, but knew I could not take them all out, and I had also changed the last E to a B with a carefully deployed biro. Despite this cautionary behaviour, I had left the report in my bag, knowing that it wasn’t good enough.
It was that night the report card was found, a perfect storm scrawled on paper waiting to execute its owner.
The verbal abuse was reaching its crescendo, I had been told of my sexual value, had myself pronounced full of AIDs, and there I stood – the barrage of abuse becoming a waterfall of words that I found difficult to ignore. It was in these times that I dissociated, shut down and removed myself. I could no longer hear, my body remaining in the situation, but my soul long gone. All I can hear is a white noise screaming through my brain. I can see his lips moving, but don’t know the words.
Enough of me leaves the situation so I am safe; enough of me stays so I can react if need be.
It was in this state I saw the bag swing towards me. Too late – I heard the words warning that I had not answered some question or another, and I had incited the last remnant of rage.
It was after mid-night. I had been in bed and was dragged out while also warning waking siblings to remain where they were for their own safety.
I had withstood the onslaught of rage and poisoned words, but didn’t see the bag until it was too late. The plastic foot, one of at least four, smashed the back of my head and split it open. Blood gushed from the wound, but I didn’t feel it until the perpetrator of this crime panicked at the blood and shoved me into the bathroom. I stood in the bath and watched the blood rush down the drain, felt the warm liquid spill down my back, and when I realised what had happened the pain came. It was a throbbing ache, pulsating from my crown.
I had a head injury and was bleeding, yet I stood in the bath and bled.
This is where stories normally stop – the abuse was over. The stories always pick up years later – the survival aspect, the retribution aspect. The stories normally part ways here – with the victim telling their side over and over, and the perpetrator maybe asking for forgiveness in a confessionals setting. The stories become a forked road, beginning as the abuse ends. News items then question the validity of the victim’s story, and use the trauma response to discredit the victim. Sometimes the perpetrator is found, but in the name of ‘unbiased’ reporting their friends are allowed to give unchecked character references. The victim is erased.
At this point, me standing in the bath bleeding and distraught, was not where our stories parted. There was to be one more egregious crime played out at the hands of adults – all in the name of Christ.
He went and called some elders in the church – confessed his sins. I heard him describe what he had done, why he had done it. I heard him justify why it had happened, my part in inciting the rage.
I waited – expecting him to be told that I needed medical care. I waited for the conversation to change, to move from one where he asked Jesus for forgiveness and came and took me from the bath tub and said we would go to the hospital.
I heard him thank his friends, talk about how his pain had been lifted. I listened as he hung up and walked the hallway to our bathroom.
He moved the shower curtain across, and looked at me standing in the bathtub.
“I have prayed, and have been forgiven. You need to have a shower and go to bed.”
And so I did.
I washed my hair, carefully cleaning the matted blood from my scalp and hair. I tenderly patted my hair dry, and combed it, accidentally touching the wound with the tines.
I was sleepy, it was late. I needed to get up for school the next day.
I went to bed and slept, rose in the morning and walked to school.
I told my best friend that I had had my head split open the night before, but told no other adult. I had already heard what happens when adults found out I had been hit. I already knew that adults were forgiven.
Mandatory reporting is something that should never be argued against. And we need, as a society, to question any adult who justifies keeping the secrets of the abuser.
We have too many adults living with childhood trauma, and too many children being made to undergo this life.
We need to remember that everyone who has kept the abuse that fills our homes a secret has caused long term trauma to permeate our society. These people are just as culpable as the abusers. There should be no other recourse.
Thank you Dan Andrews for changing the law. There are some secrets that should never be kept.

 

Christi Bezeem.

Monitoring the collective uteri of disability.

 

Abortion – the word itself smeared with judgement reserved for women – is a debate that keeps rearing its head. Ironically, the debate has a life of its own, turning into a monster that aims to trap, maim and mark those who enter the fray.

Too many think it as simple as pro-choice or pro-life. Too many think it is an issue that only affects pregnant women, and too many people without any stakes in the matter tread on, trampling all in their way.

To make things clear – I agree with abortion. I agree with a woman having the choice to stop a pregnancy if she wishes. I agree with this, because it is only a small step in the removal of monitoring the collective uteri of women as a whole. I agree, in part, because too many women do not yet have the choice whether they will become pregnant on their terms or not. Too many women have others trying to decide for them, trying to dictate the ‘if and when’ of a baby, and very often the ‘what’.

And while I agree with abortion, and access for all women to safe and effective uterine related health care, I don’t want to be asked to justify if I would abort or not. Not only has the debate morphed from if you have or haven’t aborted (I can only assume in a social test aimed at trying to mark the women with some sort of red letter), but now people openly ask others to justify ‘what’ they would abort… however, it depends on ‘what’ type of child this is.

 

This is where the debate gets ugly.

 

It is where it puts on its eugenics-lined coat, and struts through people’s conversations demanding justification for the aborting (or not), and this then allows the next question – the one with the societal bias many of us are expected to live with – comes to the fore.

As someone with a disability that affects my midline – my digestive system, my vertebral system, and my uterus – I have always known that I may not be able to have children.

Yet, what hurt the most, was knowing that my choice to have a child – even before I could have decided to abort the foetus – was being monitored. True, there was no weekly meeting asking that I justify my status, but the constant societal discussion regarding disabled women’s choices about reproduction informed me well enough.

When I was in primary school I was aware of a girl one year below me. She had Down’s Syndrome. She also had a hysterectomy – in grade 5. The reason? She wasn’t able to cope with menstruation.

The story itself is horrific enough. That I know this aspect of her story is worse – significantly worse. The girl in question wasn’t even deemed worth the privacy of her own uterus; a uterus that she had no control over, a uterus that was removed under the guise of care because she “couldn’t manage her periods”. I was learning about periods in school. I knew they meant “your body is now ready to have a baby”. I wondered if she knew that she wasn’t going to be able to have a baby, but don’t think I thought much more of the situation. At 11 I had my own issues going on, fortunately one wasn’t “managing my periods”, but that would turn up soon enough. As an adult I realised the more likely sinister motive for the hysterectomy, one that I heard advocated on a number of occasions; that women with an intellectual disability are incapable of looking after a child, nor are they capable of adequately monitoring contraception (the horror of these women having sex palpable), so unwanted babies will abound.

Unwanted by whom?

I endured an adolescence where I was told I would not attract a man; that no man would want to touch me, my physical disability rendering me as lacking the attractiveness needed to invite the touch needed to procreate.
I have been told to be grateful that someone did decide to marry me, that I am more blessed than others because my husband “looked past” the issues; assuming that loving and – shock horror – wanting a disabled person is something that simply can’t be done.

 

The concept of abortion was so far removed from this debate because (I guess) I would never have been in such a situation. It’s a mindset that too many disabled women have to endure, and the monitoring of uteri begins by making sure we know that our uterus is not sought after to impregnate.

 

When the disabled woman contemplates pregnancy, or – more egregiously – gets pregnant, a new batch of questions prevail.

What if it has what you have?
Will you abort if you see that it has the same deformities?
Do you think it’s fair to bring a child with … into the world?

Such probing, inconceivable questions don’t seem to be levelled at non-disabled women. We, disabled women, are being asked to justify the ‘what’ of our uteri – what exactly is it we deem appropriate to let grow within our wombs.

As well as being subjected to discussion pro or anti-abortion, we are also expected to politely nod at, and answer, questions about our proposed procreation plans.

The depth of hatred towards the disabled culminates in a sort of anger when it is explained that a child with a disability would not be aborted; the life of the disabled child deemed worthwhile by the disabled mother who herself, lived through the difficulty of growing up disabled. I have been asked, too often, if I would abort if my child had imperforate anus – one of the disabilities I was born with.

What makes someone ask this question? I know they are expecting me to say, “yes”, that I would abort this child, and challenge me to justify my decision if I said no. I know this because they always follow up the initial question with statements regarding the “quality of life” the child will have, and if I really wanted anyone else to go through what I went through as a child.

The ultimate indignity has been in a support group for people who parent children with my disability, as well as those, like me, living with our disabilities. Newly pregnant mothers come and seek advice, asking what to expect in this life; mothering a child with a disability. They seek comfort and reality, they seek news they will prevail in this new life they have found thrust upon them. None of this is the indignity, instead it is when someone comes to ask advice on abortion – if they should abort or not – forgetting completely (or sloppily ignoring) that there are adults in the group who live with this disability, and don’t parent it. Adults who have been asked to justify their existence, their right to success, repeatedly, in the preceding decades.

The indignity was when talk moved to me being asked to justify to a mother why she shouldn’t abort a child like me. As pro-choice as I am, this incensed me.

Do not ask me to justify your choice by belittling my own life experience. Do not expect me to give you counter arguments that ask me to label myself as less worthy of life, as less worthy of opportunity to strive for a place and voice in this world.

As pro-choice as I am, do not assume that I want to explain why it would have been okay for my parents to abort me. The problem with seeking input from the disabled person, is that this person now has a gamut of life experiences to draw upon, often where people in their lives have suggested worthlessness and regret at affording the opportunity of life, so much so that the pain of this memory cradles the answers offered. You can not expect anyone else to tell you if you need to abort or not, and I am not in a position to advocate abortion based solely on the disability of the foetus.

If I were to abort a future pregnancy it would not be because the foetus was diagnosed with imperforate anus, or any of the other six deformities that make up VACTERL. For me, there are more pressing reasons why I might abort, but to base it solely on disability would say that my life has no value because of disability. It would be to say that my disabilities have rendered my life too difficult to find worth, which is not true. I spent so much of my childhood reminding myself that I was more than what people saw, that I had something to offer the world, and that my life was needed. I spent long hours wishing death, but in a defiant dichotomy, wanting life, wanting to prove what I knew deep inside – that I had worth, and my disabilities did not change this.

Our society spends too much time forcing people to justify their existence, too much time monitoring the ways and means women bring new life into this world. It is this that needs to stop; not the advocating of abortions. Society, as a whole, also needs to realise that restricting access to abortions is only part of a wider pattern of reproductive constraint, and until such a time that this constraint is removed from people’s minds – abortion is the least of the issues by far.

Christi Bezeem.

Iscariot’s Rope

 

Today I found Iscariot’s rope –
Bloodied and frayed from overuse –
False camaraderie is still a crime the world commits.

Thirty pieces of silver offer no recompense,
Do nothing to alleviate the guilt.

They sit, heavy in the pockets of the damned –
Replacing the secrets a modern-day Judas was to keep.

The Potter’s Field has been fertilised with idle gossip,
an accomplishment placed on the shoulders of the unwary.

The silver is churned through the dirt; relishing the tarnish it had bought.

And yet, the rope swings above,
Never without the weight of someone’s reputation.

Patiently it waits; it is a lesson never learnt.

Christi Bezeem.

 

Patient X

They found you sulking in the corner of the room – blubbering forth a series of incoherent syllables that never quite morphed in status to words.

Your weathered features – punctuated with mismatched hues of yellow, green and blue – sparked a level of sympathy often reserved for the congenitally infirm. It was a miracle you were still alive; as the fall had rendered your legs useless, yet there you were, waiting patiently for rescue. It is the one thing you can do well – wait. Wait for someone else to do whatever it was that needed to be done, wait for someone else to take the blame, wait for time to pass by and maybe – just maybe, everyone would forget all the horror.

They didn’t know this about you, that you had the tenacious patience of a predator; and the bruises did not let on there was a secret to be told. And so you babbled, like a Pentecostal baptised in the Holy Spirit, savouring the attention, and relieved that you would soon be warm, comfortable and well fed.

I watched them gently wrap your disjointed limbs with a series of bandages, swathe your soul with tender words of encouragement, love and purpose.

It was more than you knew you deserved, but why would you tell them that? You saw no reason to stop the pretence, no reason to admit that you had done nothing to deserve such kindness. I watched as they registered their newly scrubbed John Doe into a clean hospital ward, and I waited too, knowing that mine was a game of patience; more so than yours.

There was pity in their eyes as each of them talked to you, trying to elicit a memory, a cord of life that could be used to reel in information that might help solve this puzzle. And it worked. It worked because your memory was never broken to begin with, just your ability to articulate the role you played in developing each and every one of them.

I was the only one privy to these buried visions. You took solace from their faces, using the pity that percolated in the room to affirm the story that would now become your mask. I had anticipated this, as all too often I had found myself shackled to you, forced to listen to the lies that tumbled from your mouth at every opportunity. You sat mute through their questions, your eyes glazed in pretence of amnesia.

I, on the other hand, listened to the memories launch themselves around your head.
Each question asked of you was littered with judgement. Never for you though.

They were too taken by the beguiling nature of your age; your injuries duped them into believing that you had suffered more than any human deserved. Their scorn was reserved for those whom they deemed as being responsible for your fate.

You and I both know that is you.

You are responsible for this; I will never cease to tell you this. You will hear my voice as a constant reminder of the role you played in this. I know you will take solace from these people, as I take mine from time. You cannot escape time; you cannot escape me.

“Surely someone is looking for you? Your clothes are well cared for, there were photos of a young girl in your wallet.”

They wait. I am amused by their constant attempts to get you to remember. They do not understand why no-one is looking for you. You and I both know why she does not come.

She will never come.

I know you can hear me. I see the recognition in your eyes. I can see the shame is hard to swallow, but I notice, once again, you seek a reprieve from the past. You remind yourself of all the accolades your friends gave you. How proud they were of you that you raised the child by yourself. You basked in the glory of their praise. You used their voices to drown out mine.

I know you could hear me ask you to stop. I saw you falter several times when you heard my questions. I asked you why you did this to her. I scoffed at your lies. You knew your behaviour was wrong; still you accepted your friends’ excuses for your abhorrence. I knew then, as I know now, that as long as no-one else knew the truth, you would be happy.

“Is this your daughter? What is your name? We must find her. I can’t believe that she left you there!”

They are still fooled by your age. It is curious that human kindness prompts us to see only innocence in the very young and the very old. Now the very young I understand. You do too don’t you? Think about her. She was young, full of innocence, beautiful. The old however, they have lived a life; they know what will disgust others and what will inspire. You knew this, just as those Nazi criminals knew when they immigrated after the war. Now when one of them is arrested people find it so hard to believe that they were evil. The Nazi’s greyed features and thinning hair, curved spines and sun worn hands convince the world that someone so frail could not have committed such a crime.

In the same way these people now judge your daughter. They look at you and think of their own gentle grandfathers. They would never abandon their kin, and don’t understand why you have been left behind.

Listen to them. Hear them. They are discussing your daughter. They don’t know who she is yet, but they are disgusted by her. Their disgust fuels the pity they feel for you and enhances the tenderness in the care they offer. To them you are a valued member of the community, cruelly left when you needed the most care. Look at their admiration for you; ill-deserved; but only you and I know this.

Are you sick of my voice yet?

I know you pretend you can’t hear me.

I will keep talking. She deserves that much at least.

They think of her in the most disrespectful of terms, and you let them with your silence. Your hubris fuelled ruse is more important than her. When will you stop being like that?

I have something to show you. You don’t even need to open your eyes. Remember this? It is your child. You did this to her.

She did not tell, you made sure of that. She stood silently as you grabbed a fist full of her hair and slammed her head against the door jamb. Your rage knew no bounds, and you could feel the power swell in your heart as you berated your fragile offspring. She stood there – this did not surprise you, as she always stood in sullen defiance. It angered you to see her able to stand so strong throughout your barrage.

She never spoke, but her eyes were fire; a furnace that warmed her through those cold nights of shame and humiliation. The pattern remained the same. You would sit there seething each night, reminding yourself about how hard your life was because of this child. The hate would build, you could feel it clawing at your chest, pulling your sternum up so hard you would soon stand resolute.

That fateful night was no different except that she was sleeping. She rarely slept, knowing you were prone to wake her on a whim, only to ask her to complete a series of household tasks that really could have waited until the morning. The night was easier for you this way. If you had waited until morning the guilt of what you had planned to do would have made you stop your infantile behaviour. Instead, you chose to allow your anger to direct your actions through the night, and slept through the morning so that by the time you had risen the series of events could be wiped from your mind.

The first clue was the stands of hair that were trapped in the roughened edges of the jamb. You paid them no mind, choosing instead to yell at your child through gritted teeth. It was only when you saw the blood dripping down her legs and pooling on the floor that you panicked.

Did you know she did not even feel the pain of the cut? It was only as you dragged her to the bathroom, and stood her shivering body in the shower recess that she noticed the strange wet substance dripping down her back. I was with you when you called your friend to ask for advice. Your daughter was listening too; the pain of the deep gash to her head now pulsating through her body. She heard you ask your friend for advice, ask if you should take her to the hospital, then silence as you got the answer you wanted. She was waiting to be taken for medical care when you returned, instead you told her she would be okay and to go back to bed.

I saw the stoic resistance return to her face as you let her know she would not be getting the attention she needed; relief too, because she loved you in her own way and didn’t know what to do if she was forced to leave her home.

Exhausted, you left her in the bathroom and returned to bed.

She is the one these Samaritans now judge.

They do not know of the nights filled with terror, the demolishing of spirit that you commanded.

Let me take you back to that time. The hallway clock ticked inanely, stretching the night past 2.00 a.m., 3.00 a.m., 4.00 a.m. She could hear her heart beating a course of blood through her throat. Always shivering, she would think of her bed and its warmth, she would wait for the quiet of the dawn, when you were guaranteed to be asleep.

Sometimes you wake now and listen to the hum of a hospital ward dimly lit with a plethora of machines, lights and neon signs. There is a sense of quiet ease, with everyone knowing their place, and you knowing that you will be looked after.

Do you wonder where she is? They do. They listen to your jokes, your articulate explanations for the goings on in the world and know you are someone they could only dream to be. They have scoured the missing persons’ listings to no avail.

But you are not missing, nor are you missed.

That one hurt didn’t it? You are not missed, and that is a bitter pill to swallow. Like the obscenities you used to throw around with abandon, this knowledge will consume you; consume us.

I see you have closed your eyes again.

You can’t block me out. You are not like her. She was a master of dissociation, a well practised art form of survival. You are the master of blame; he made me say this, she made me think that, I reacted this way because they … Can you see the difference? No I suppose you can’t, because I can see you now as you look for the nurse to show you kindness.

“Sir, are you comfortable? I loved the story you told last night, so engaging …”

The nurse looks at you with renewed respect. You are used to this. People are always pleased that you share conversational time with them. They see it as a compliment. The distinction of having such an educated individual take time from their own lives to enlighten other people’s. This makes you proud, and once again you can avoid the memories that are now demanding to be acknowledged.

“I have been looking for your daughter …” Your heart pounds incessantly; her heart was stronger.

“Do you remember anything? An initial, a place, anything? It will help.”

This pretence is hard isn’t it? You avoid the nurse’s eyes lest you reveal some semblance of truth.

“Your wounds are healing quite well, but without knowing who you are we are not able to send you home …”

You are happy to hear this aren’t you? I see a tinker of joy flash in your eyes. I am disgusted, this cannot go on forever, the truth always comes out. I know it is getting harder for you to ignore me. That pleases me. The decades I have spent trying to get you to listen are starting to wear you down. You don’t even have to say sorry to her; only admit that her memories are true without the litany of excuses. Can you do that? I didn’t think so. That is a fate much too hard to contemplate; yet … I see a flicker of shame.

The nursing staff knows something.

Can you see them? There … look.

They keep glancing at you, talking amongst themselves. The hushed voices frustrate you.

You begin to feel panicked, the ignominious sensation of being caught out mounts in your spine. I can feel it.

Once again you resort to your old routine. I don’t think your mantra will work this time. I scoff at your fear, but remember the nurses still think you are suffering amnesia.

You saw her before I did – your daughter’s childhood friend.

Did she recognise you? I am sure she did. You pretend to sleep, as you are not sure if you can control your eyes.

“Good morning Mr. Sutton. I have something to read to you. It may assist your memory. I knew your daughter; everyone said that you did such a wonderful job raising her …”

Is she mocking you? You work hard to maintain your composure, although I am sure she has noticed the increased pulse rate and sweaty brow.

“It’s such a pity you have amnesia, as I am positive you have such beautiful memories of her. It’s such a shame you have forgotten those. Let’s see what we can do about that. Should I read?”

She takes your mute face as assent and begins.

“Never take revenge, my friends, but instead let God’s anger do it. For the scripture says, ‘I will take revenge, I will pay back, says the Lord.’ Instead, as the scripture says: ‘If your enemy is hungry, feed him; if he is thirsty, give him a drink; for by doing this you will make him burn with shame.’ ” (1)

Her eyes catch yours. She knows.

“Do you feel shame Mr. Sutton? No I suppose not. However, I am duty bound to look after you, and sincerely hope that you get your memory back soon.”

I smile.

An apt use of Paul’s letter to the Romans don’t you think?

You sigh, and life continues as it did before.

 

(1) Romans 12: 19 – 20 Good News Bible The Bible Society in Australia Canberra 1986

Christi Bezeem.