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AFTER MARRYING IN ADELAIDE, AUSTRALIA, IN 1947, my parents set up house in Thevenard, a small coastal town on the far west coast of South Australia. It was a happy time for them, with numerous friends and family nearby. A year later their happiness seemed complete with the news that they were expecting their first child.
There were concerns for some months before the birth because the baby was in the wrong position, but just before my mother went into labor, the baby turned. Labor itself was a lonely, frightening experience for Mum. In those days, the father was virtually dismissed at the doorway; my mother was left alone in the small country hospital for hours at a time. Eventually a baby girl, Helen, was born.
Within days, my parents suspected that something was amiss. My sister could not keep milk down. She vomited constantly. The local doctor kept dismissing my parents’ fears, insisting my sister “merely” had congenital stenosis of the esophagus (a narrowing of the esophagus, which itself can be quite serious). Mum would put her baby in the sun to kick. In time, it became obvious that she could kick with only one leg. Slowly, joy turned to apprehension. At nine months of age my sister was flown to Adelaide for medical tests and my parents’ worst fears were realized. They were told she had cerebral palsy.
In order to access specialized care for their new baby, my parents moved to Adelaide. Soon after the move, my mother took my sister to a local doctor. He said my parents should place Helen in an institution and forget about her. Mum insisted that she wanted to care for her baby—the baby showed so much affection—to which the doctor replied, “So does a cat or a dog if you are kind to it.” My parents never went to that doctor again.
Helen had suffered a cerebral hemorrhage, either before or during birth, which had affected one side of her brain. She was partially paralyzed on one side of her body. As a child she wore “leg irons” and a brace for her right hand. She walked with an unsteady gait. She could not shower or dress herself. Her throat muscles were affected, which meant she could not speak or swallow properly. She dribbled; Mum would mash her food first and then Helen would eat by pushing one mouthful down with the next. She could make some sounds but none that were easily intelligible. The extent of her intellectual disabilities was unknown and is still difficult to assess.
After much apprehension, my parents decided to have another child. When I was born in 1953, my sister was nearly four years old. My early childhood memories are not clear. Some things I have been told, others I vaguely recollect. I have a sense of being surrounded by love, but I also remember the ongoing stress within our family.
When I was a baby and needed to sleep, my mother barricaded me in my room for safety. It was difficult for my sister to understand that this new baby was not a toy, and she would be quite rough and hurt me. Jealousy probably played a part in this as well.
Helen’s delayed development meant that she learned to walk just before I did. Often, just as I would get upright, she would push me over. She was strong in spite of her disabilities. As we grew older, we would sometimes fight, and I would often be the one hurt. I am told there were other times when we interacted quite happily.
When my sister was about four, she went to Ashford House, a school in Adelaide for children with disabilities. She would be taken to school in a bus. As I grew older, I thought the bus was extremely special and delighted in greeting it each morning. I’d hop into my sister’s seat until it was time for the bus to go. Helen was fearful of everything, especially leaving home, and would struggle with my mother against being put on the bus, even though she enjoyed her time at school.
Although my sister could not talk, she understood much of what went on around her. She would “talk” about things—Christmas, birthdays, other happenings—with actions and sounds. It was often like playing a guessing game. My uncle wanted to teach her signing, but the speech pathologists of the day forbade it, saying that she needed to keep working her throat muscles. In fact, the muscles never improved, and her inability to communicate effectively has been a major frustration both for her and for the rest of our family.
Part of my sister’s condition includes epilepsy, which is now largely controlled by medication. But as a child she would have regular episodes, known as petit mal seizures, which caused her to stare and her facial muscles to twist. These would last for several seconds and be followed by prolonged crying. I never really understood what was happening, but I remember as a young child being frightened by these incidents. I don’t recall my parents explaining them in terms that I understood. There was no opportunity to discuss my feelings.
My mother regularly invited children to our house to play. If new children seemed worried by Helen’s strange behavior, Mum would take them aside to explain that even though my sister couldn’t talk and play, she could understand what was being said and enjoyed being a part of our activities. I think, at that age and in that situation, I was quite comfortable with her being with us all. The children seemed to accept her differences.
It was a different matter when we were out. It upset me when people stared, both for my own sake and for the sake of Helen, whom I wanted to protect. People would actually stop in their tracks and watch our slow progress. This annoyed my parents as well, not only because they could see that I was distressed but because they were unable to provide an appropriate answer to my question of why people stared. To this day people still stare and we still feel uncomfortable.
As a child I did well at school. I played netball (similar to basketball), took part in callisthenics, and had several friends. At home I tried to be “good,” to achieve, and to “make things right” for my parents. But inside there was a growing collection of feelings that confused me and that I could not share with anyone. I felt so sorry for my sister, but because of the embarrassment she unintentionally caused me, I wished she would disappear. I felt bad whenever I achieved some feat that my sister could not. At the same time, I was constantly seeking approval.
For many years my sister cried at night. She and I shared a room. My father needed to go to work each day and I needed to go to school. In order for us to get some sleep, Mum would change places; she would sleep in my bed and I would sleep with Dad. It was exhausting for everyone. Eventually, in my early teens, my parents built on an extra room for me, which meant that I could have some privacy and a quiet space for study.
My sister would sometimes stay at Somerton Home, an Adelaide facility that provided respite for families, but I remember her desperately not wanting to go. With all the distress surrounding her departures, and because we were all left feeling full of sorrow and guilt, it was difficult to enjoy our break.
Our lives revolved around my sister’s needs. We didn’t do a lot of the things other families did. One year we went to the Royal Adelaide Show (similar to a state fair). My sister saw an ambulance and wouldn’t come out of the chicken pavilion because she associated ambulances with being taken away from home. We didn’t go to the show again.
The few times I went out to dinner alone with my parents were precious. Occasionally I took part in an activity with one parent, but it was a rare moment, indeed, when I had both parents’ sole attention. At those times I felt like a princess.
Fortunately, we were able to vacation with my mother’s relatives in the country. A supportive extended family had many benefits for me. Spending time with cousins helped the development of my social skills. At times I would visit them on my own, which increased my ability to develop independence. Two of my grandparents provided tremendous support when I was young. My paternal grandmother often cared for us, and I’ll always remember her ability to jolly Helen along.
Helen attended Ashford House for twenty-six years. It was a wonderful facility that celebrated the lives of all its students. During that time, Helen continued to have physiotherapy and speech therapy. Her formal schooling was limited. In later years she was transferred to the activity center, where she learned to help with the cooking and crafts. She also joined the (Girl Scout) troop at the school. As a family we attended many festivals, barbecues, concerts, cricket days, and other celebrations.
At the age of thirty my sister moved from Ashford House to a sheltered workshop. She would often become highly emotional and refuse to go. Staying home was not the best option for her, and, acting on professional advice, my parents placed her in residential care during the week. This was a particularly difficult transition for everyone.
After some time, Helen settled into supported accommodation and a sheltered workshop. She has been a valued employee for many years and, although sometimes tentative, continues to find enjoyment in a range of activities. She spends weekends and holidays with my parents, follows football, and loves music and discos. My parents have continued to give her tremendous care and loyalty for more than fifty years. She gains enormous pleasure from being around friends and family. At social gatherings she takes particular pride in showing off her family, especially my husband, our two children, and me. And though it is difficult for her to initiate conversations herself, she responds to many situations with a great deal of interest and humor.