A letter from Mel to her readers
My story begins when I was four years old and my brother Guy was born. I realised, even at that young age, that nothing was ever going to be the same again because it soon became apparent that my brother had severe disabilities; but it wasn’t until many years later that he was diagnosed with Autism.
The Autism Spectrum Disorder, ASD, includes a wide range of symptoms, levels of disabilities and skills. Some people have mild disabilities and can lead a relatively ‘normal’ life, whereas others, like my brother are very severe and require constant care. He cannot look after any of his own physical needs, has limited language, equivalent to that of a two – three year old and will never live independently. Throughout his life his frustrations have boiled over many times as he navigates a world that often terrifies him. His inability to express any sort of emotion means he cannot even articulate when he is in pain.
For my older brother and I it meant saying ‘goodbye’ to childhood and understanding that all the choices made by our parents wouldn’t be directly about us anymore and that our lives would be, in many ways, as disparate as that of our disabled sibling.
But, the positives far outstripped the negatives. The love I have for my brother and him for me is unconditional. When I visit him and he greets me by placing his head on my shoulder and saying, ‘My Mel’, it means more than a thousand words or gestures ever could. I adored him from the moment he was born and wanted to protect him and take care of him. In return he has taught me compassion, patience, the ability to empathise and to laugh; I would not be the person I am today without him in my life.
It was when I was nine years old and my brother was five that an episode occurred which had a huge impact on me. I was out with my mother and my brother shopping when he exploded in a tantrum, shouting, kicking and screaming. Several people came up to us, not to offer help, but to berate my mother, telling her she was a disgrace, my brother’s behaviour was disgusting and that he ought to be put away.
I couldn’t understand why people were so judgemental. I wanted to tell them to, ‘put my brother’s shoes on’ for a moment and try and comprehend what it must be like to be him, locked in a frightening world that made no sense, where something like a flight of stairs can paralyze him; a world where even sleep holds no respite, his dreams tormenting him and making him shout out throughout the night.
I knew then - one day, I would give my brother Guy a voice. This decision was reinforced when many years later we all accompanied my father to South Africa on a work trip. In the taxi on the way to the hotel, the driver turned around to the back and, pointing at my brother, said, ‘Over here we have a policy of dealing with people like him.’ I have never forgotten those brutal words or the horror I felt when he said them. Why did he feel my brother’s life was worthless compared to his?
Over the years my voluntary work at my brother’s centres helped me understand that when you judge someone on their disability you disregard their uniqueness and abilities. When he was younger my brother was placed with children of varying learning difficulties. As a volunteer I was able to spend more time on an individual basis with some of them and these young people taught me not to make assumptions, that we all communicate differently but everyone has a voice inside them, which needs to be heard because we experience the same emotions and desires; to be loved, to love, to be accepted without limitations.
I also began to recognise that people’s judgement of those with learning disabilities didn’t necessarily come from a bad place but because of fear. There was, at the time my brother was a child, so very little education or contact with people with learning disorders. Things have improved greatly over the last few years but we, as a society, still have a long way to go, so this has fuelled my desire to help dispel the myths of disability even more.
‘Having Down’s syndrome is like being born normal. I am just like you and you are just like me. We are all born in different ways, that is the way I describe it. I have a normal life.’
Chris Burke (Actor and Folk singer)
I was lucky to work as a Teaching Assistant at a very innovative, inclusive sixth form college where students of all abilities learned together. It was at this college that I assisted some teenagers with Down’s syndrome, all of whom were striving to live as independently as possible in the future.
Despite my brother being schooled alongside children with Down’s syndrome, it wasn’t until I worked at the college that I realised that, like people with autism, there is a wide range of abilities, disabilities and skills within the Down’s syndrome spectrum. At one end of the scale at the college there was Charlie, who had limited cognitive skills and needed help in most areas of his life, including eating, and then there was Rosie, who opened my eyes and inspired me to write this story. She was kind, funny and fiercely independent, determined to make her mark in the world; to work, fall in love and get married – after all her friend Paula’s mother had Down’s syndrome. Like my brother, Guy, I knew Rosie deserved to be heard and because every single one of us merits seeing themselves within the pages of a book.
I shall leave the last words to my Rosie.
“Why is it different? Is it cos I have Down’s syndrome? Down’s syndrome isn’t me. I am Rose.”