An Angel's Life - PhMuseum

An Angel's Life

Hannah Beatrice Owens

2018

Manchester, England, United Kingdom

Rufus was born with Angelman Syndrome, a genetic disorder with severe learning difficulties. Such conditions are usually framed in a purely negative light, ignoring people’s unique personalities and the joy they bring. This close, intimate study aims to remove some of the stigma of disability.

When Rufus was diagnosed with Angelman Syndrome (AS) at 14 months old, his parents felt they had been handed a life sentence. The medical discussion was shrouded in negativity, with doctors informing them of all the things he wouldn't be able to do, but nobody telling them about how life would change for the better.

AS is caused by a small part of the 15th chromosome is missing. Only approximately 1 in 20,000 children are affected. There is currently no cure and Rufus will require life-long care and many therapies to improve his communication and mobility problems. But alongside the challenging characteristics of the disorder, people with AS also show an unusual amount of joy (the disorder used to be called ‘Happy Puppet Syndrome’). They have excitable, happy demeanours and infectious smiles. Rufus also brings his unique personality which doctors, of course, could never predict.

His mum, Lucy, sees it as a choice to focus on the privileges instead of the hard work: ‘I love the way he is completely smitten with me and his Dad. I love the ability he has to slow life right down. Our lives are richer, bigger, better, and fuller because of our precious little boy. Fear and inconvenience are there but they’re not winning.’

Rufus’ disability has challenged his parents’ understanding about life in many positive ways. He has helped them slow down and savour the moment. He has brought perspective in what is a typically competitive society – where we compare ourselves to others, he defies comparison with his peers. He is affectionate and loves brightening strangers’ days with his smiles, challenging the idea that a person’s value is based only on their ability to contribute economically.

Without minimising the challenges that living with disability presents, I hope to show a fuller picture of their family life that incorporates both the joys and sorrows, smiles and fear, the ways their home has been adapted to fit the equipment Rufus needs, as well as the ways their social groups have adapted.

As technology for pre-natal screening advances, parents are able to find out about serious conditions earlier. In some cases parents are actively pressured to consider terminating (healthtalk.org, 2017) and in Iceland the vast majority of women receiving a positive test for Down’s Syndrome now choose to terminate.

The way the discussion is currently framed around both diagnosis and screening means parents can be led to think that a disability is the end of the world. This project aims to open up discourse to include the ways parents cope with the challenges, removing some of the stigma and fear of disability.

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  • Lucy single-handedly manages getting Rufus’ coat on at the end of nursery, whilst carrying four-month-old baby Nell in a baby carrier. Life for the family of five is never easy or simple; Rufus’ disability comes with everyday additional challenges: he can’t talk or walk, he is a dead weight when lifted, he has no concept of danger, and doesn’t put his hands out if he falls. He requires near constant attention to keep him safe.

  • The PODD (Pragmatic Organization Dynamic Display) book is a resource for improving communication and literacy abilities. It contains a number of pages on different topics. Rufus’ parents keep the relevant sheets in the kitchen, his bedroom and the bathroom to explain various activities and to talk about who they’re going to see that day.

  • Rufus enjoys making fun happen by prompting his sister, Betsy, to pump air on his face from a balloon pump. This was a new development for Rufus who, previously, had never initiated a game. It marked an important stage of discovering his power to take control of his own world.

  • Rufus is very dramatic in his affections and likes to pull people close for a really good hug so Lucy carefully guards and guides his cuddles with his baby sister, Nell.

  • Betsy loves being a big sister to Rufus, and helps pushing his wheelchair on the walk home from school. Lucy says, ‘Never in a million years would I have imagined this story when I was pregnant with Rufus. The story I had imagined was a pretty dull one. The pages of this story might be a bit damp with tears but they will be full of little victories: milestones met at unexpected times, cuddles and sloppy kisses from the most loving boy in the world, an unbreakable bond with his protective sister and blessings beyond our wildest dreams.

  • A very common moment of pure joy and laughter for Rufus. His mum, Lucy, elaborates, ‘I often use the word ‘joy’ to describe Rufus because happiness just doesn’t seem to cut it. Rufus, most of the time, nails the epitome of joy. You can see it welling up in him if you hang around with him long enough. It comes from somewhere most of us have to tap pretty darn deep into on an average day and it’s the same place he stores his giggles, where his pining for intense cuddles live and where the words that don’t have sounds are kept.’

  • Rufus’ development happens at a different pace to others but he continues learning and growing every day and reaches milestones in his own time. Lucy says, ‘He may not be able to stand, sing, spin around, say his name and interact appropriately with a newborn but you should see the effort he puts into reaching for toys.’

  • Sleep is difficult for a lot of Angelman children. Rufus has had sleep problems from an early age. He is now in a special large bed in his own room, so although he may be awake for most of the night, he doesn’t disturb the rest of the family. The darkness of the room gives him some rest and he gets up with plenty of energy again the next day.

  • Rufus looks out across the nursery, from near the snack table, one of his favourite spots. He is (currently) non-verbal, and has delayed development. The idea of being unable to communicate with their son was one of the hardest things for his parents to come to terms with.

  • Rufus’ epilepsy medication stored up high in the cabinet. Seizures affect around 80% of people with Angelman Syndrome, usually becoming evident by the age of 3. Rufus made it to 4 and a half with none, so it was hoped he was one of the ‘20%’. Sadly, he suffered a number of seizures during February 2018 and had to start using Epilim medication to control them.


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