Once I had a sister. Her name was Alison and she was twenty-one months younger than me, the middle child of our parents. We shared the same straight brown hair and green eyes, different from our younger brother with his blue eyes and blonde hair.
Alison and I were born uneventfully at home. In the first year of my sister’s life, our mother began to worry about her development. “This child is strange,” she told a close friend, “She smiles at things that are not there.” Alison’s howling would be the first thing our father heard as he turned into our road each evening. Alison reached her second birthday without walking or talking. Professional help was sought and my parents were told that there was “a permanent problem” and they needed to plan for her long term future.
Alison was given a diagnosis of “mental handicap” (now termed learning disability). Before this, it was suggested to my parents that her difficulties might be caused by the way that our mother was interacting with her. This was not the case but was a theory circulating in the early 1960s about the cause of autism. A decade later, blood tests established that her disability was likely to have been caused by a chromosomal abnormality occurring at the point of conception. Nowadays, Alison would have been described as having a “severe learning disability” and possibly autism. She was small in stature and a restless child, always on the go. She developed epilepsy that worsened when she reached puberty.
Alison learnt to walk and proved herself to be an adept runner and climber, skills that placed her at risk, as she had no sense of danger. There were times when she went missing from home and the police had to be called. Once we lost her on a beach when we were on holiday and twice I stopped her from climbing out of an upstairs window. We all learnt to be vigilant.
Alison did not learn to speak beyond a few words. These included our mother’s name – Elsa. She could hum a tune and enjoyed music and nursery rhymes. Her favourite toy was a hand-held cord-pull music box, and her favourite game was a nursery rhyme on our father’s lap or running around the dining table with me and my brother. Alison ate with her hands rather than cutlery, and mealtimes could be a messy affair. She loved ice cream and, on more than one occasion, snatched an ice-cream cone from an indignant child when we were out. Alison could remove all her clothes but could not dress herself and depended on others for all her personal care needs.
Our extended family lived too far away to offer practical support and the emotional support our mother received was limited. Most neighbours in our small cul-de-sac were understanding but the main support for our parents came from other families who were members of a local society for “mentally handicapped children”. There were social events that we could attend as a family, and we benefitted from this contact with other families.
During our childhood, our parents faced a difficult choice. To continue as a family of five when the only respite support available was one week a year, or to place Alison into full-time care, so that the rest of us could have a “normal family life”. They chose the latter and at the age of eight, Alison went to live at Essex Hall in Colchester. In 1969, the world was changing but for vulnerable people it was still the era of institutional care. Essex Hall was a hospital housed in a Victorian building and formerly known as the “Essex Counties Asylum for Idiots”.
Each month, we would make the two hour round trip to see Alison and take her out for the day. As we pulled up into the hospital car park, a sea of faces would appear at the tall, Victorian windows, looking down at us. This was discomforting, and I was glad that Alison and the other children lived in a separate place on the hospital site in modern accommodation with a school attached. The walls of the children’s ward were brightly coloured with murals, and there was a separate kitchen and dining area. The children slept together next door in another ward filled with cot beds made from metal.
When Alison came home to stay for the weekend, breakable items had to be moved out of her reach and home security intensified. We had acquired a cat and Alison picked him up by his tail before he was moved upstairs to safety. I remember my parents being exhausted at the end of these weekend visits, and the return to peace and calm after she left.
I always looked forward to visiting Alison when we were a family of five again. Days out together were spent in Castle Park and at the Lyons Tea House. The ending to these days was always sad though because Alison would howl in distress when we said goodbye and left without taking her with us. The atmosphere in the car would be strained and uncomfortable and few words would be spoken. Our “normal family life” brought benefits to the four of us, but this was cut short when our mother died suddenly, three years after Alison went into care.
Alison spent half her lifetime at Essex Hall before she too died unexpectedly a month before her sixteenth birthday in 1977. I have often wondered whether Alison’s life at Essex Hall was a happy one. On our regular visits, she appeared to be well cared for and the nurses were kind and friendly. The fact that she often repeated our mother’s name and her distress at being left behind convinced me that she would have preferred to be at home with us.
When we were young, I found it hard to answer questions about Alison from other children encountering her for the first time. Why is she wearing a nappy? Why doesn’t she speak? Why do you have to hold her hand? Why do you have locks on the outside of your bedroom doors? With my close friends who lived across the road, it was easy as they accepted Alison and understood the importance of keeping her safe: “last one lock the gate” was our mantra whenever we came round the back of the house. When we played our imaginary games together, using Alison’s enormous cot as a wagon (our father added a roof to this to stop her climbing out at night), she would play quietly in a corner of the room. “I remember Alison. She was a nice little girl,” one of these friends told me last year.
I turned eighteen in the year of Alison’s death and left home for university. Back then, and for many years afterwards, I preferred not to mention Alison and pushed the memories of her life and of our family loss deep inside myself. As a social worker, I avoided working with disabled children and their families for at least half of my professional life. When I overcame this barrier, it turned out to be one of the most rewarding parts of my career.
I have wished with all my heart that Alison had lived longer to benefit from the introduction of care in the community and that my parents had been offered the range of family support services that exist today, instead of two impossible choices. Essex Hall closed in 1985 and a new housing development was built over the site that sits next door to Colchester train station. A few years ago, when I was passing through the station, I looked out of the window searching to see what was left of the old hospital site. All that remained was a large cedar tree that had once stood in the hospital car park. It made me happy to see it still growing there, a surviving marker of the place, and I make sure to look out for it whenever I pass through the station.
In recent years, I have tried to recover memories of Alison and our relationship. I am grateful to our father for sharing his narratives of family life and for looking after the three of us after our mother died. Other family and friends have also helped me to develop and shape my own narrative through their stories: my grandmother, uncle and my mother’s close friend Sally. Also my daughter’s curiosity and questions about her aunt propelled me forward in my search. “What was she like? Can I see a photograph? Would she have liked me? Would I have liked her? Would we have visited her where she was living? Would she have come to see us?” Yes is the answer I gave to each of these questions. The Sibs group for bereaved siblings gave me the opportunity to share with others the complexities of our sibling relationships: the guilt, the shame, the anger and the love, in a way that has been very healing for me. Lastly, thanks to my brother for understanding me and for our enduring relationship.
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