Light at the End of the Tunnel: Surviving the shame of disability within an ethnic family

By Cassy Martin

Cassy is the first of her generation born into a Christian Lebanese family after they emigrated to Australia, and she was set to be the golden grandchild. But when it was discovered that she had cerebral palsy, the promise of her wonderful future vanished, and a veil of shame descended. Now an embarrassme

• Language: English
• Publisher: Caroline Nehme
• Release date: Apr 11, 2023
• ISBN: 9781922957511

Book preview

INTRODUCTION

GOD MUST LOVE ME. The people I’ve known for most of my life have told me, ‘You’ll always live with your mother, and you’ll never have a normal job.’ Now, at 30 years old, I have my own apartment away from my family and I’ve started my first full-time job with a government department. Having an income and my own space over which I have total control is a new experience for me, and I am really appreciating the freedom it is providing. No longer will I have to use my savings to get the phone, water or power reconnected after bills have been left unpaid, nor will I need to endure verbal abuse for not handing over every cent that I earn. My pantry and fridge will always be stocked, and my home will be free of shouting matches and a continuously stressful atmosphere.

Life obviously hasn’t always been this calm; in fact, I can’t remember a time when I was growing up that wasn’t difficult or full of drama. My close friends who know me well are aware of the circumstances of my upbringing and have always accepted me. Newer acquaintances gradually get an insight into how I am treated by my family and at first dismiss what they see or hear; but over time they come to the realisation that it is in fact the truth. I have no need to exaggerate the events of my life, but I accept that people sometimes just can’t believe what they witness. Let’s start with some family history and see where that leads us.

CHAPTER 1

SOME BACKGROUND

Lebanese history

MY GRANDMOTHER AND GRANDFATHER are named Cyla and Adam and they both grew up in Lebanon, in a village in the northern mountains. Grandma and grandpa are taita and dodo in Lebanese, pronounced ‘tay-tah’ and ‘doe-doe’ (jiddoo is proper Arabic for grandpa, but dodo is what our family use). Taita and Dodo each had seven brothers and sisters and they are first cousins, so I guess they probably knew each other growing up because arranged marriages within close family are common. Dodo was about five years older than Taita and they got married when Taita was sixteen, as I recall. Layla (my mum) was born in 1960 and is the eldest of their children, followed by Angela, Charles, John and baby Norman.

Mum and Taita love telling the story of the time Layla was three years old and walking in the village. She reached a fire pit which was burning for warmth, and she walked right into it and fell in. As a result, she experienced third degree burns. Luckily, she was pulled to safety by onlookers and taken for appropriate emergency treatment. The quick action of those people saved her life and enabled Layla to have a successful recovery. And she was so lucky, as the treatment left her with no visible body scars. Mum used to say the treatment for the burns took several months.

Adam (Dodo) went to the USA for a year and a half to visit his aunt and work in her restaurant, which was one of the first Lebanese restaurants of its kind in early 1960s America. A very busy restaurant at the time, it offered uniquely new cuisine and a way to eat that was very different to what Americans were used to. The restaurant was very popular and busy, so Adam spent many hours working night shifts. His aunt’s son (Taita’s brother) also worked there, and his aunt allowed them to collect and keep the tips that customers had placed under their finished plates of food. Dodo would send this money to Taita, and eventually she had saved enough to purchase six plane tickets for her and the five kids to join him. But where would be best?

Adam was encouraged to come to Australia by another one of his relatives who was already living here. He told him rent was cheap and you could eventually save up and purchase a house. Adam was young and wanted to experience world travel but also wanted to decide where to settle down with the family, as Lebanon was a country in conflict, full of uncertainty and unsafe. He understood that in a western country there would be the opportunity to build a more stable lifestyle, and he came to Australia to see if this was where he wanted to bring everyone to live permanently and call home.

After a while he had learned what it was like, and he felt Australia was a great country to settle into. He had been working as a welder and saving money, and now he had a new job making bricks. He rang Taita and told her to pack up and prepare the kids and herself to move here. So Taita and the five kids flew to Australia. I’m not sure when or why, but baby Norman passed away sometime after they had emigrated here.

Meanwhile, two of Taita’s brothers and their wives, each with seven children, also arrived in Sydney. These close, immediate family members flew to Australia at different times, but there were now three families getting a feel for living in Australia and finding their way around. Because there were so many unknowns and uncertainties in the new country, they decided to live together for support and to increase their confidence. They rented six-bedroom properties in suburbs like Redfern and Marrickville as they were trying to get used to their new home, language, and culture. None of them could read or write English and they didn’t converse in English very well.

Throughout this time, apparently none of the children went to school because they were in a new country and no-one knew about school, and that it was required in Australia. Then one of the neighbours said, ‘We don’t want people in our neighbourhood that don’t send their kids to school.’ Soon after, someone from the Department of Education came to the house saying that it was compulsory for children of this age to be attending school and gaining an education. All the kids went to school from then on; Mum didn’t start school until she was about eight years old.

Also around this time, after the three families had been living together for a few years, conflict started between them. They all decided to find their own properties and live separately. Dodo was very forward thinking, and he had been doing his own research by catching a train out to the suburbs and walking around to see what was available and what the areas were like. He had discovered the new suburb called Campsie, and had placed deposits on two weatherboard properties next door to each other there. One property he rented out, and they moved into the house next door. He also had a third property, located a few blocks away, as an investment. He didn’t tell Mum and the other kids that he’d actually purchased the property they moved into, or about the two others. He was a man who was rather private about his accomplishments. The family settled at Canterbury Road, Campsie, and the kids all went to school at a Catholic school in Campsie.

When it got cold, Dodo got some charcoal in a Lebanese barbecue burning in the loungeroom to warm it up. Mum was sitting at home, crocheting, and was nearly overcome with heat or gas, and thankfully managed to run outside for fresh air. I don’t think they did it again after that.

At school, Layla was a keen basketball player. She enjoyed and was good at shooting the ball into the basket, making her contribution valuable to the team. Her attendance every Saturday helped the team win games, and the parents of one of her school friends picked her up and dropped her off as Dodo didn’t have a car. She really loved playing basketball and being part of a team, but unfortunately, Mum didn’t get to be part of the basketball team for too long. As it turned out, she only had five years of schooling in her entire life before she was forced to be married.

Layla marries Bernie — 1974

She was to marry Dodo’s nephew, Bernie, which made him a first cousin to my mother. Mum did all she could to avoid him. She was always against this arranged marriage as she had no connection to him romantically. My grandparents had planned and pushed for this wedding to go ahead and, as usual, had the last say. They even went as far as lying to the church about Mum’s age; she was only fourteen years old, so they must have expected it to be an issue. Luckily for my grandparents, back in those days investigations weren’t so thorough and people could get away with more. Not so lucky for Mum, though.

Taita and Dodo didn’t need to lie to anyone else, as they all knew Layla’s true age. All they cared about was the Lebanese tradition and the way relatives and other people in the community viewed them. Back in the early 1970s that was how the Christian Lebanese community was, and possibly they still are. My grandparents have an unrealistic, perfectionist view of life that did not exist in reality, and as long as they looked the part in their social circle, that was all that mattered. This is how they saw things done back in Lebanon and they knew no different than to bring that same behaviour with them to Australia, but today it would surely be classed as abusive parenting at the very least.

Mum was ten years younger than Dad. He worked for a company fitting tyres onto cars, but being married somehow gave him an excuse to give up his job. He expected his new wife’s parents to reward him and fund his life. He hinted that they should provide a house for his family. After all: ‘How dare they be working and forging ahead when he was unemployed?’ His only income was the occasional gambling win, which would be immediately gambled away again. When he lost, he would get angry and curse Taita and Dodo. He wasn’t very smart and was extremely lazy. I always remember him with an alcoholic beverage and a cigarette in his hand. All he had to his name was a two-bedroom weatherboard house in Auburn, Sydney’s west. It was in a dead-end street backing onto a large park and was situated on a large block, but was really nothing special. This became their home after the wedding.

There was no honeymoon planned. My grandparents told their local friends and extended family that Mum and Dad did go on a honeymoon to Brisbane, just to make themselves sound good in and around the Lebanese community — that was all that mattered. Taita and Dodo were always very controlling of them both and felt they had the right answers to every situation that arose.

Cassy is born — 1975

I was born four weeks premature in March 1975, at Auburn Hospital. Layla was born in March 1960, and therefore had just turned fifteen a week earlier! Early on, Mum noticed that I could not sit up properly without being supported by cushions. It really became obvious when I was being christened; I was not able to sit on the bed so they could take a photo of me in my christening dress. Mum became very concerned with this and she took me to several doctors to find out what was the problem. It was an extremely distressing time for Mum when she was told she had a spastic daughter with cerebral palsy.

She asked the doctor what this meant, so he elaborated by telling her: ‘Cerebral palsy is caused when certain parts of the brain had been damaged due to lack of oxygen. It is a group of disorders that affect a person’s ability to move and maintain balance and posture and is the most common motor disability in childhood. Cerebral means having to do with the brain, and palsy means weakness or having trouble with movement.’ Thankfully, she didn’t give up on me and was determined to find an adequate treatment. She then had to go home to confront Dad, and she told him that doctors said parents being close blood relatives would have contributed to their daughter having cerebral palsy.

The extended family now had the news of my diagnosis, so my grandparents went in search of a miracle. Since I had been born into a Lebanese Christian family, they insisted I wear a gown of the Lebanese Saint Charbel for a full year so I could be cured. And it worked! As if…

Mum took me to so many medical appointments. Many were at the Prince of Wales Children’s Hospital, which I generally hated as that was where I had my various surgeries.

At the age of two, I required eye surgery because cerebral palsy affected my eyesight. It gave me a condition called nystagmus, which essentially meant I had no control of where one eye was pointing. The operation was necessary to rectify this condition, and I had to be referred to an ophthalmologist. Mum obtained a referral and took me to Prince of Wales Children’s Hospital to have a consultation with the famous Professor Fred Hollows. I had at least two surgeries to correct my eyes — as much as possible, anyway.

All credit to Mum — for a teenage girl without much education, she was certainly resourceful when it came to implementing supports for me. Mum was always seeking out ways to enhance my life, and she was very dedicated and resilient in terms of finding me the best treatment for the time.

For one, she arranged for me not only to go to a special school, but also organised my transport there and back. I guess it may have been more like daycare or preschool as I was still very young, and I believe Mum was working. I started at Northcott. I was obviously too young and mobility-limited, and unable to use public transport, so she found a subcontracted, police-checked driver approved by both the school and the Department of Education. The driver, ‘Mr Friend’, would pick me up from home, as well as up to three other children from their homes, take us to Northcott, and take us all home again afterwards. Throughout my entire school life, transport was provided by the Department of Education.

A typical day would start with Mum waking me up at 7am, showering and dressing me, and giving me some breakfast. She would pack my lunch into my hard, rectangular, yellow school case with metal latches. About 7:45am there would be a knock at the door. ‘Is Cassy ready yet?’ It would be Mr Friend, a tall, medium-build man with thin, wispy grey hair. His car was red, rattly, and cold but filled with little children’s chatter. He must have been a careful driver because I never remember having any car accidents. Going to everyone’s individual properties was interesting, because I saw what their homes looked like from the outside and observed how their parents treated them when they were sending them off for the day.

When we got to school, all the cars that were dropping the kids off would drive up the ramp into the playground area to let us out of the car. There were lots of teacher’s aides around to assist the children into the building and some needed assistance into their wheelchairs. At the end of the day everything went in reverse until I returned home with my little yellow case.

Northcott is a school in Parramatta for disabled children. I don’t remember a lot of specific details about being there, except for meeting Mrs Hellams on my first day. She wore big glasses and had long brown hair. She gave me the first birthday cake I can remember. My first friend was Diana, who was in a wheelchair, and I visited her once or twice.

Bernie takes me to the orphanage — 1978

When I was about three years old, Mum had bad appendicitis and she had to be rushed to hospital for treatment. Dad could not cope with the thought of having to look after me by himself. He was never good at taking responsibility at the best of times. With that thought, he miraculously became super resourceful and obtained the location and phone number of an orphanage, where he took me in the hope that I would never return.

In numerous discussions between myself and Mum on this topic, I was told I had an amazing visual memory for phone numbers at such a tender age and I would call Mum from the orphanage while she was still in hospital. I told her that Dad put me in this awful place. Mum was most upset by Dad’s actions and when she was released from the hospital, she had to gain some legal advice as to how to get me released from the orphanage after being there for a week or two. It was an extremely challenging time because Dad was happy for me not to return home. I was very lucky that Mum wanted me to return home despite Dad not wanting me released. She reckons he obtained the orphanage information either from one of our cousins or Northcott School.

When Mum and I returned home after she liberated me from the orphanage, we found out that Dad was working hard for once in his life, trying to speed up the process of selling the house out from under us. He was relieved, as he thought he had successfully gotten rid of me, and in the hope that he could sell the property, he would also be rid of Mum too. When Mum became aware of his ploy, she took out a legal caveat to ensure he could not sell the house without her knowledge or signature.

Recently I was talking to a friend, and she told me that I am super lucky that my Mum cared for and loved me enough to have me released from the orphanage. Back then, in and around the 1970s, when a