The Difference Makers

By Roja D. Sooben

‘The Difference Makers’ is about unconditional love, friendship, perseverance and triumph.
The story unfolds around a group of parents seeking answers for the safety of their children against the backdrop of the news report, published in the autumn of 2007, of premature deaths among people with learning disabilities in the UK.
Spearheaded by Emily Beacon, a mother of a child with Down syndrome, the local Down syndrome parents support group, alongside other support groups, worked tirelessly to make sense of what premature deaths mean for them.
Every parent was asking two unresolved questions: ‘Could this happen to their child?’ And, ‘What’s the government doing about it?’ Their deep fear about their children’s safety was only made worse by the pervasive silence following the publication.
A serendipitous interview by their local radio gave them the platform to voice their inner turmoil. Emily Beacon’s words reverberated across local and national radio stations of the inconceivable agony that parents endured, and of health and social inequalities.
A few days following the radio phone-in programmes were aired, the nation witnessed an unprecedented impact. The parents’ audacious call for change was finally answered when the British Prime Minister reached out to them.

• Language: English
• Publisher: Xlibris UK
• Release date: Feb 13, 2019
• ISBN: 9781543494624

Book preview

Copyright © 2019 by Roja D. Sooben.

Library of Congress Control Number:        2019901589

ISBN:                Hardcover                           978-1-5434-9464-8

                         Softcover                             978-1-5434-9463-1

                           eBook                                 978-1-5434-9462-4

All rights reserved. No part of this book may be reproduced or transmitted in any form or by any means, electronic or mechanical, including photocopying, recording, or by any information storage and retrieval system, without permission in writing from the copyright owner.

This is a work of fiction, set against a historical event and incidents. Names, characters are either the product of the author’s imagination or are used fictitiously, and any resemblance to any actual persons, living or dead, or locales is entirely coincidental.

Any people depicted in stock imagery provided by Getty Images are models, and such images are being used for illustrative purposes only.

Certain stock imagery © Getty Images.

Rev. date:05/23/2019

Xlibris

800-056-3182

www.Xlibrispublishing.co.uk

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CONTENTS

Part One

Emily, Jack, Julian, and Amy

Emily Beacon: Mother, Wife, Supporter, Friend, Activist, and Artist

Emily’s Long-Lost Friend, Rachel

Rachel and Her Parents

The Beacons: Family Life

Meeting of the Down Syndrome Parents Support Group, November 2007

Rachel at the Magic Brush

Rachel Tells Emily about Rob

Part Two

Emily and Julian: Inner Turmoil

Emily’s Turning Point

Second Meeting at the DSPS Centre

Jack and Amy: Mini Musical Game

Julian: Talks of Seamless Agony

Down Syndrome Parents Support Meeting: The Relentless Seven

Robin’s Farm

Another Parents Support Group Meeting

Another Support Meeting

Part Three

Emily’s Radio Interview

The Government Has Our Back

The Nation Wakes Up to Something They’ve Never Experienced

The PM’s Letter

……it is only with the heart that one can see rightly, what is essential is invisible to the eye.

Antoine de Saint-Exupery

Acknowledgement

This book is dedicated to children with learning disabilities and their parents.

PART ONE

Emily, Jack, Julian, and Amy

‘Mummy! Mummy! What does premature mean?’

‘Oh, darling, you were not born premature. Actually, you were the biggest baby of them all.’

‘I know that Mummy, you’ve told me about that many times before.’Emily looked somewhat perturbed by her son’s question, she asked, ‘Then why are you asking me about it, my sweetheart?’

Finding it hard to explain, Jack pulled his mum towards the TV screen.

Emily cupped her head in her hands as she went back to the breakfast table at home, where she has been listening to the local radio news. ‘A young adult with learning disability has died while receiving medical treatment at the Dillingworth Hospital.’

‘Hello, Mum. How are you? I was going to call you, but it’s been a bit hectic here. No, you’re all right. We’ve got a few minutes. We’re leaving early ’cos of the weather. Jack was supposed to be doing his laces up and getting his new school bag ready. But he was watching television … I know, Mum. Premature death has reared its ugly head again … Well, collectively, as a support group, we’re a very determined bunch of parents, and we deeply desire some sort of change to take place. You know, a change that’ll make a positive difference in all our lives. The trouble is we’ve never been able to articulate what we want … You know, Mum, we don’t even know whether our government is able to change and improve the lives of people with a learning disability. Because often we feel as if we’re an afterthought in the way health and social care services are organised and distributed across the country … Exactly, things are dealt with differently if there were avoidable deaths among the public.’

Since the recent report that certain individuals with a learning disability have been proven to have died prematurely, Emily and many other parents had been on tenterhooks about their own situation.

Emily’s son was born with Down syndrome, and as a member of the support group, she too wanted to see tangible actions of accountability from the government. Emily knew only too well how others from the Down Syndrome Parents Support Centre felt about this latest news. She had received an influx of phone calls, emails, and texts, mostly from her local support group.

Walking out of the house to take Jack to school that morning, Emily managed to brush the news aside and thought to herself, ‘Stop. Wait to hear more of how and why before you draw any conclusions.’

She was listening to the radio while waiting for Jack to get in the car. ‘It’s going to be a typical November weather today in Dillingworth, says our weatherman,’ Emily said to her son. ‘You do know what this kind of weather means, don’t you, sweetheart? It’s likely to be cold too. Just take your extra jumper with you for this afternoon, okay?’

Jack rummaged in the bag by his feet. ‘Which one, Mummy?’

‘I think the maroon one. It’s soft and warm.’

Dillingworth was a small village about fifteen miles from the main city, and the normal driving time to her children’s school was around twenty minutes, but today it took them twice the time.

Jack was revelling in the novelty of the mysterious atmosphere brought on by the fog.

Emily pulled up in front of the school gate dead on nine o’clock amidst a cacophony of the chimes of the school bell and shrieks of youngsters from the school yard. A chaos brought on by the unexpected change in the atmosphere—hooting and screaming both from fear of falling or clumsily bumping into their friends as they tried cautiously to get to school, but all the same moving with purpose.

‘My goodness, that was close with all the near misses and skidding,’ Emily said to Jack with a big sigh of relief.

‘Hey! Robbie, is that you?’ shouted Jack as he wound down the car window. ‘Mummy, I’m sure that’s Robbie’s voice, but I can’t really see him.’

‘Oh, maybe you can catch him. But no running, though.’

No one was running or rushing. No bicycles were whizzing past the two majestic oak trees that stood steadfast in front of the entrance of the school.

These trees have been there as signposts of Good Hope Primary since its existence in 1927. The schoolchildren would often recount the fun time and jokes they have made about these two giants.

These 100-year-old oak trees have become known as Little and Large, Jekyll and Hyde, Jack and Jill, Mum and Dad, Sis and Bro. Every child wrote their own poem titled ‘From an Acorn to an Oak Tree’. The school children looked most fondly on these two trees as their school ‘watchmen’.

As pupils of Good Hope, Jack and Amy thought it cool to be going to the same school as their parents did.

‘Okay, see you later, Mummy.’

‘Jack, remember to wait for Amy after your music lesson. Daddy will be picking you both up this afternoon.’ Emily’s voice trailed off.

‘Yeah, I know, Mummy—same place, same time.’

‘Don’t forget you’ve got guitar lesson this afternoon, okay?’

But just then, Jack made two wobbly steps back.

‘Oops, careful!’ shouted Emily.

Emily had started the engine and saw Jack at the corner of her eye, so she waited.

Jack leaned over the car door with a cheeky grin and said, ‘Mummy, I nearly forgot—d’you remember that last week it was Amy’s turn to stay at Grandma’s house? And so this weekend, it’s my turn. I’m staying overnight at my friend Robbie’s. Is that okay? And, Mum, you know my friend Robbie. Oh yes, his dad said it’s not a problem to bring me to school on Monday morning. Please, Mummy!’

They both laughed out loud. Jack did so for having remembered his treat for next week. But for Emily, the sudden burst of laughter was of the pure delight from seeing her son’s love of life and his straightforward thinking.

‘Of course! We’ll remind Daddy about it tonight, okay? I’m sure it will be fine.’

Jack’s ways of seeing life reminded Emily of herself and how she coped with life generally.

As soon as Jack was out of sight, Emily found herself back in a daze she had been in since last night’s breaking news. The recent published report of the loss of lives of people with learning disabilities had a deep impact on her.

As a parent of a son born with Down syndrome, Emily was particularly taken aback that the loss of lives could have been avoided if they received the individualised hospital treatment. Even more poignant, she thought, was that their health needs were misunderstood. Feeling a deep sense of desperation, she absent-mindedly hit the car horn of the steering wheel, causing nearby passers-by to stop and look towards her car.

Emily sat there pondering why and how such inconceivable things could happen in the modern day of healthcare. She began thinking what it meant to misunderstand someone’s health problems. Hard to comprehend or to accept, Emily thought of the hundreds and thousands of parents of children and adults with Down syndrome and other similar learning disabilities.

Emily drove away slowly, thinking she could catch another glimpse of Jack again, but she could just hear children’s voices as she drove past the school yard at the far side. She was also thinking she might have to check around lunchtime with the headmistress in the likely event of school finishing early because of the weather condition. If so, she needed to adjust her work schedule, but then she thought maybe she would not be going to work today after all. Customers might not be popping in to the gallery if the fog wouldn’t clear up.

Most mornings after her school runs and before doing any of her usual household routines, Emily would stop for a chat over coffee at her local support centre or sometimes take her lunch break with friends or group members at Meadow Café.

Emily Beacon: Mother, Wife, Supporter, Friend, Activist, and Artist

Over the years, Emily had grown in confidence, a remark she often made about herself. A self-reflection on becoming a different person is an activity she regaled over many times with close family members and friends. She often said that this happened for all the good reasons. She related this change in herself to the support network of friends and relatives and living in a great place.

Since the birth of her son in July 1997, Emily had no longer been hesitant in expressing her thoughts and feelings, even to people whom she had met for the first time. One aspect of her transformation (as she often called it) is that she had become fond of sharing and being ready to offer her support to the point that even if it meant she would have to start her own work later than usual. This flexibility was a godsend in all circumstances.

Emily was 28 years old when Jack was born. Her second child, Amy, was born two years later. She was married to Julian Beacon, a chartered accountant. Much of her husband’s life after secondary school was dedicated to getting an education that would give him financial freedom, a lesson his parents instilled in him and his two older brothers.

Meanwhile, Emily followed a more of a down-to-earth and pragmatic career path. Having consistently achieved high marks in artwork as an academic subject throughout her secondary school years, she instinctively decided that when the time comes, she would do some form of artwork for a living.

Awards and prizes for best colourings, water colour paintings, even the décor for Easter and Christmas plays were annually attributed to Emily’s painstaking work. Her school ‘scrap’ book bears testimony to this natural progression of her artistic talents.

Amongst many of her key collections were the very first during her second-year primary to the final of her A level—from the Northumberland autumn scene to her final-year masterpiece, which is Emily’s treasured memento— a painting of pink and pale blue water lilies against the backdrop of snow peaks. Of the twelve lilies, two of the largest ones represented her mum and dad, something Emily enjoyed talking to her children about.

Emily is the owner of an art shop called the Magic Brush, which she created from scratch. Her morning errands worked to a T, a ten-minute drive from home to work and then about fifteen minutes to her kids’ school.

Artwork demands patience, dedication, and a lot of personal time—traits Emily and Julian admired in each other when they first met. Emily found Julian’s work ethic deeply attractive, and at the same time, she saw his vulnerability. Julian would tell of his escapades during his A-level years at school, but mostly his final year at university. The best part for Emily, though, was the number of nights Julian spent diligently studying and how he was desperately nervous the night before his exams were due. Emily always saw the human frailties of Julian as someone who often saw life as either black or white.

Julian was quite a raconteur when it came to stories of his younger days. He would have Emily in stitches, a storytelling knack he inherited from his two older brothers and his paternal grandfather. Of course, the memory of being nervous or uncertain had been wiped out completely by the time he met Emily.

Time and success in all his exams made the telling and retelling of his college days that much sweeter and funnier every time with much embellishment. Emily would stand in amazement and disbelief of Julian’s new twists and turns to the latest version of his recollection.

In 1996, Emily opened her quaint small boutique. Despite the financial upheavals of the time, they managed to secure enough funds to buy two properties in that same year they were married.

Their home was a three-bedroom cottage in Dillingworth town and the other a one-bedroom ground-floor convenience shop situated at the other end of the town next to the small village of Cragbay.

When Julian brought Emily to Dillingworth and Cragbay for the first time, Emily fell in love with the place straightaway. She loved its natural beauty and historical details.

According to the locals, Cragbay got its name after the small rivulet that gently tumbled from a metre high through the cracks of the wall off the first left side off the main road. This small rivulet was nestled between an unusually large pavement and a verge of tall reeds and brambles.

Nowadays, it’s almost invisible to pedestrians unless they stopped to read the history signpost across the road near the Sunday market site. To many, it’s a small canal. To Emily, it’s much grander; she calls it a quaint little water feature.

Julian had persuaded Emily to have her shop away from home, although, at first, Emily was doing most of her drawings and paintings at home. For Julian, being located at the centre of the village was an obvious strategy in attracting more customers. The convenience of the ten-minute drive between Dillingworth and Cragbay made their final decision that much easier.

The location of their small business had, over the years, proven to be a reliable income for Emily, where she had made a name for herself selling her own water colour drawings and paintings.

After a tedious exercise in manoeuvring through the fog, the darkness and bright lights from both small and large vehicles, Emily pulled up in the car park of the local supermarket at almost 10 a.m. By then, she had already put off going to work.

Emily’s Long-Lost Friend, Rachel

Emily was in the middle of an unusually empty supermarket and deep in thought about Jack’s end of term, Amy’s school uniforms, and Christmas and New Year orders when she was accosted by a very lively young woman with a very pronounced American accent.

‘OMG!’ said the stranger, walking towards Emily. The stranger said in a loud voice, ‘Oh my god, Emily? I can’t believe it! I can’t believe I’ve found you! And you’re shopping here in the same supermarket?

‘Emily, I was so worried of not seeing you again since my return to England. I know it was a foolish thing to have done all those years ago, leaving with little trace or correspondence about where I was going … or my reasons for moving to America.’

Emily stood still as if glued to the floor, oblivious to the odd customer meandering round them to reach items from the shelves from time to time.

Overtook by fear, anger, and excitement, Emily slowly realised the reality of the situation. She thought, of course, it was indeed Rachel standing next to her in the middle of the supermarket. Just as this friendship began by a chance meeting and developed rapidly ten years ago, it was followed by an equally abrupt end.

Still visibly shocked, in a raised voice, Emily said, ‘Is that you, Rachel?’ Her voice was dry and stern. Then as if she was talking to herself, avoiding eye contact, she added, ‘That’s not possible. I’ve been coming to this corner of Dillingworth practically every day, all these years.’

Still in a changed tone and struggling with what words to utter, she asked Rachel, ‘What happened to you? Are you all right?’

Rachel did not get a chance to answer Emily’s questions as more questions came flying from Emily one after the other.

‘For the first couple of years, after Jack was born, I myself didn’t know whether I was coming or going. But still, at the back of my mind, I kept wondering and sometimes said out loud to myself, But why? Why? Why?’

Rachel had remained still all this time, but Emily had almost absent-mindedly been picking up items from the shelves and dropping them in her trolley, hardly paying attention to the shopping list clutched in her left hand.

Emily turned and looked at Rachel, eyes a bit red and her voice calmer, as if it had just dawned on her that she was in a public place. But still tenacious and with a disapproving-headmistress demeanour, Emily turned around to Rachel and said, ‘Rachel, as much as I am sad for not seeing you all those years, I am also very angry