A Life Without Limits

en

A LIFE WITHOUT LIMITS

Sir Bert Massie CBE DL

Disability Rights Activist and Advocate

Mereo Books

1A The Wool Market Dyer Street Cirencester Gloucestershire GL7 2PR An imprint of Memoirs Books Ltd. www.mereobooks.com

A Life Without Limits: 978-1-86151-905-4 First published in Great Britain in 2019

by Mereo Books, an imprint of Memoirs Books Ltd.

Copyright ©2019

Sir Bert Massie CBE DL has asserted his right under the Copyright Designs and Patents Act 1988 to be identified as the author of this work.

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Preface

In writing this memoir I have two objectives. The first is to give an account of my personal history as somebody who became disabled at the age of three months

soon after the end of World War II and therefore grew up with the development of the welfare state and the birth of disability rights. Each person’s journey will be different, but I believe many of the obstacles I faced, as well as the support and encouragement I received, will be familiar to many disabled people.

My journey started in a large working-class family living in a provincial northern city. It has finished

with a number of the glittering prizes of middle- class respectability, although my roots remain in that

working-class background. It was an unusual journey and perhaps worth recording.

Disability and its consequences have been a large part of my life, as have been the disability organisations that have helped and supported me.

I refer freely to my impairment of polio, and some disabled people will criticise me for this as they believe we are impaired, but disability is caused by society. I

will explain this debate later, but it was not current for the first half of my life. As I grew up I was very much aware I was one of the polio group and was treated accordingly. My experience was different from that of a blind person or someone with a different impairment.

The other purpose, and the more important one, is to record the development of disability rights in the UK and sometimes further afield. This is not a full history of disability, disabled people or even disability rights.

I have sought to record the developments in which I was personally involved and therefore of which I can offer some insight into how policy was developed and implemented. In doing so I am conscious

that I was never the single person who devised or implemented major policy developments. It was always a collaborative process. It was my honour to work with so many committed and wonderful people, many of whom were disabled, although equally many were not. Teamwork has been at the heart of everything.

Inevitably the two broad themes of my life are intertwined and I have made no attempt to separate them, as it would be impossible to do so. Had I not been disabled, my life would have taken a different course.

Looking back on my career, I can reflect on the many significant improvements in support for disabled people. For example, the Disablement Income Group led the battle for financial support for disabled people during the 1960s and 1970s. They presented strong coherent arguments on why change was needed. In

contrast, from the late 1990s onwards there has been a consistent determination by government to reduce disability benefits, and as a consequence disabled people are returning to the poverty we faced in the 1950s.

There needs to be a clearer appreciation of why the benefit system evolved the way it did. Much of the same can be said of policy relating to the mobility of disabled people and of housing. The 1970s saw

a renaissance of welfare and social care support for disabled people, but the late 1980s saw moves to reverse this progress. Apart from those with the

highest needs, most of the support has been scrapped because it is seen as too expensive. It is, I think,

worth recording what was achieved, so we can set our ambitions towards a better future.

People become disabled through a range of factors, and as a young man I concentrated my efforts on campaigning on issues that affected me personally.

This memoir is therefore biased. It was much later in my career that blind people, deaf people and others began to assert themselves. People with mental health issues were hidden away in institutions. People with learning disabilities formed their own organisations to ensure their voice was heard. There are books waiting to be written about the struggle for rights that all these groups experienced. That is not the aim of this memoir. If I was not involved in some way, I deal with such issues only in passing.

However, I think we are missing accounts of individuals who were involved in some of the battles and witnessed others first-hand. To ensure that disabled people enjoy human and civil rights was a mammoth task that involved tens of thousands of disabled people as well as our allies. If we allow these to be unpicked, it could be at least a generation or two before they can be recreated. That is the task that lies before disabled activists today, and it is an uphill task, because so many of the support mechanisms, such as local authority financial backing for organisations for disabled people, have disappeared. It is also important that disabled people ensure politicians understand that ideological policies frequently have a negative impact on the independence of disabled people.

So often I have witnessed ideology eclipse rational thinking and seen the horrid consequences that have made life more difficult for disabled people. If nothing else, I hope this memoir will remind people of the value of what has been achieved.

This memoir is therefore inevitably the partial one- sided view of one individual, but I hope that enhances rather than diminishes it.

Footnote, by Lady Massie

My husband asked towards the end of his life that his memoir should acknowledge the part played by two

former colleagues, Ann Frye and Bob Niven, in helping to complete the text (especially chapter 12) and bring it to publication. I was, and remain, very grateful to them.

For Maureen

All royalties from the sale of this book will be passed to the charity Local Solutions, which since 1974 has been generating and delivering services to support individuals, families and communities, with a primary focus on those experiencing disadvantage, exclusion and vulnerability. Their work is focused on serving the communities within Liverpool City Region and North Wales. Their work is guided by a vision of a society in which all people can live with dignity, lead fulfilled lives and realise their potential. Their mission is to build resilience, raise aspiration and improve lives. www.localsolutions.org.uk

CONTENTS

Foreword, by Lord Blunkett

1 Polio Strikes 

2 Greenbank 

3 Expanding Horizons 

4 Beyond School 

5 Early Jobs 

6 Embryonic Activist 

7 The Semi-detached Activist 

8 Through the beam of RADAR 

9 The Disability Rights Commission Lives! 

10 Inside the Equality and Human Rights Commission

11 Reflections 

12 No Such Thing As Retirement 

By Bob Niven and Ann Frye

Postscript 

Foreword

By Lord Blunkett of Brightside and Hillsborough

Bert’s story, told in this memoir, is an extraordinary journey of

determination, resilience and courage combined with great intelligence and an ever-present sense of humour.

Bert rose to national prominence and recognition as a disability

campaigner and social reformer, but he never forgot his Liverpool roots or his childhood struggles with disability and poverty. He made an enormous

contribution, not just to disability rights but actually to ensuring that the voice of people with disabilities was heard in ways that it hadn’t been before.

I had the greatest respect for Bert throughout his career. It was at the Royal Association for Disability & Rehabilitation (RADAR) that he first really came into

his own at national level. RADAR was a great name because it was about questioning the environment, it was about finding out where the dangers were, it was about steering a course towards disability rights. Bert at RADAR was a phenomenon in himself.

When I asked Bert to chair the Disability Rights Commission and he enthusiastically accepted, his negotiating skills were absolutely fundamental. People were arguing on the head of a pin. He had to do all the hard graft behind the scenes of getting people to work together.

The one thing that should light a candle and keep us all going is the memory of Bert’s expertise and his excellent way of persuading people, with his inimitable wit and humour, to do things that they didn’t want to do, and also his tenacity in keeping going over those years.

Bert’s lasting legacy is a transformation in the rights of people with disabilities, in legislation, policy and practice.

We all owe Bert a huge debt of gratitude and we need to ensure that his spirit lives on.

David Blunkett

Chapter 1

Polio Strikes

It was the day that changed my life and dramatically set it on a course that could not have been anticipated, but I have no memory of it; I was only three months old, after all. Such images as I have are drawn from the memories of others and, like all memories, they might have been affected by the fog and blurred

vision of the passing years. The same picture is seen differently from another angle and through another’s eyes. But these borrowed memories are all I have

of that day. I was given a starring role, but remained ignorant of the script.

My nineteen-year old mother was the first to spot

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the change. Something was wrong. The infant in her arms was listless and vomiting up his food. His eyes were unfocused, his temperature rising. His body lacked its usual vitality and strength. It was floppy, the left arm immobile, the right one weak, and both legs lay useless. She was an experienced mother with a one-year-old daughter, but this was something she had not witnessed before. I was a tiny infant, and my behaviour and condition were frightening.

Mum and Dad were living with Dad’s parents in a small terraced house in Roxburgh Street in north Liverpool. In seeking help, Mum did not turn to her

in-laws but to her own mother, who lived a few miles away. My Grandma Roberts was a tough, resourceful woman. She had remained in Liverpool during the worst the Luftwaffe could throw at the city and, while her husband sailed on the Atlantic convoys bringing food, materials and weapons from the United States, she had raised their four children. My mother had told her how worried she was that I had a fever and was listless. The energy in her three-month-old baby had disappeared. Grandma knew the signs. Speed was essential. There was no time to call an ambulance, and a taxi would have meant spending the rent money. Few people owned telephones in 1949 and no neighbour was sufficiently wealthy to own a car.

So Grandma grabbed me and carried me to the busy Stanley Road, with its constant flow of lorries

SIR BERT MASSIE CBE DL

and carts servicing Liverpool’s still bustling docks that lined the banks of the River Mersey. Gran stepped into the road in front of a lorry, whose driver had little choice but to apply his brakes. It would take a man

of great courage to refuse an instruction from my formidable Gran. She ordered the driver to take her and me to Myrtle Street Hospital. Having agreed, his immediate problem was getting Gran into the high and inaccessible cab of his lorry, which was larger than  the average house. He got out and while Gran pulled herself into the cab he applied pressure to her bottom and eased her in. Such is the family story.

Mum was left behind to look after my sister Joan, who was just over a year old. We drove from Stanley Road to the city centre until we reached Myrtle Street Children’s Hospital, which, like many Victorian hospitals, has since been demolished. It has been

replaced by Myrtle Street Community College and Arts Centre, where many years later my brother Wayne would work as a caretaker. And so I began a lifelong association with the medical profession, which to this day has left me with a deep and abiding suspicion of many, but happily not all, doctors.

In 1949 my mother was a young woman, already married with two kids, and like a lot of young people of the time she was keen to look her best. Despite the poverty of

the time, this she managed to do by making clothes last

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and by placing cardboard in worn-out shoes to give them extra life. She was attractive and had red hair which when caught by the sun was rich in autumn shades, from warm copper to burnished gold. She had an elegance that would have given many an actress a run for their money. While rearing two babies, for three hours every night she worked at Jacobs’ biscuit factory. During the day Dad worked as a carter around the docks, with his cart being drawn by a horse.

Before she was old enough to vote, Mum already had considerable responsibilities. She had given birth to my sister Joan a year earlier and had not started her married life in the best of circumstances. She was living in the home of her in-laws, Herbert and Eva Massie, a three-up three-down terraced house. Living with in-laws was quite usual then because of the acute shortage of housing. Liverpool was a major port and had been essential to the war effort. In that sense it was a legitimate target for the German bombers. They aimed for the Liverpool docks and their cargo ships.

The bombs that missed their targets flattened houses in the crowded streets near the river. Some people have since argued that the Luftwaffe did Liverpool a favour, because by the liberal and generous use of high explosive, they helped to clear huge areas of slum housing. But it was a dangerous type of demolition, because it cost over 2,000 lives. It was as though Coventry had moved to the banks of the Mersey.

SIR BERT MASSIE CBE DL

My mother had her opinion of the war. Like many people of her generation, she suffered her share of horror and tragedy. She told me how Grandma had come home one day after seeing a bomb hit a bus packed with people. As the bomb found its mark the bus exploded into a crimson ball, looking like a huge dahlia. Human flesh was sent flying in all directions and as she looked down she saw a head rolling towards her, so freshly parted from its body that blood was still oozing from where the neck had been seconds earlier. The face still had a look of startled terror. It was an image that remained.

She was not the only family member to suffer the privations of war. My Grandad, George Roberts, was a merchant seaman and took part in that vital struggle for our survival which became known as the "Battle

of the Atlantic. He was sunk at least once; he was an unwitting victim of what the German U boat crews called their happy time". They thought they were well on their way to victory. My grandad must have

thought so too as he bobbed up and down in the swell.

When I knew him he was shaped a bit like a cork and seemingly floated like one. I recall him teaching me to tell the time but he never spoke of the burning ship he had refused to leave until he had rescued several members of the crew, at great risk to himself. I suppose he would have seen it as just another war story among millions.

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I had been in hospital six weeks since my ride in  the lorry, and still the doctors appeared to have no idea what was wrong with me. Questions were asked of them, but were always met with a vague, uninterested response. An attitude prevailed then with some doctors who seemed to regard working, uneducated people, as little better than peasants who could not be expected to understand the dark arts or the enlightened science of medical practice.

Grandma grew very impatient with this patronising approach and exploded with all the fury of a repressed class which had just struggled through a vicious war and now demanded to be heard. She assailed the German doctor who was in charge of my case, and was eventually given the gloomy news that I had infantile paralysis. This was the popular name for what became known as poliomyelitis or as I came

to know it, polio. This was catastrophic news for my family, although I was blissfully unaware of it. However, I must have been made of the same toughness that was typical of the rest of my family. Polio can kill, but mostly it doesn’t. It is a short-lived virus, but it leaves its former host with lifelong memories and effects of the visit.

Polio has been around for at least about 3000 years. Caused by a virus that enters the bloodstream and attacks the central nervous system, it affects the nerves that control muscles, and this results in muscle

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wastage. The term ‘poliomyelitis’ comes from the Greek polios meaning grey and myelos meaning matter. The grey matter referred to is found in the spinal cord. When the nerves die the muscles they serve can become weakened. The respiratory muscles in this situation can be especially vulnerable.

Many people would contract the polio virus and only experience mild symptoms. At three months old I knew nothing about what was happening to me. I must have experienced some difficulty in moving about and my mother would have been sensitive to this.

Apart from the emotional shock, it affected my parents in practical ways. They would visit me frequently but could not afford the bus fares, so they had to walk across the city to get to the hospital.

For the rest of her life my mother blamed an infected hypodermic needle that had been used when I had a vaccination. I think she was probably mistaken about this, because in 1949 there was no vaccine to be had for polio. There was a lot of research being done in

the USA to try and find a suitable vaccine, but sadly that would take another five years.

The two men who produced the first successful vaccine were to fight each other bitterly and developed a deep hatred for each other. Salk produced the first vaccine using dead polio virus, and this became the first effective defence against polio. Sabin thought it better to use a live virus, as this would provide longer-

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term protection. However, it was not until the 1960s, that decade which is defined by its music and in which I became a teenager, that polio vaccine was widely used. A full discussion of the development of the polio vaccine is contained in an excellent book by Tony Gould1.

Myrtle Street had done all they could, but they thought I could not survive outside a hospital. I was transferred to one of Europe’s largest children’s hospitals, Alder Hey, which just happened to be in Liverpool. Alder Hey started life as a workhouse and was to be found in one of Liverpool’s oldest districts, West Derby, which is mentioned in the Doomsday Book of 1086. The Board of the Poor Law Guardians bought it in 1910. At that time it was a luxury mansion, and it was their intention to convert the building into a care home for poor children. When it became a hospital in 1914 Britain was already involved in a war, so it was used to treat the wounded.

Alder Hey was to be my home for the next five years. When children are in the early years of life they expect and receive plenty of love and affection and warm cuddles from their parents. These I received during the strictly limited visiting times when Mum could visit and when I was allowed home

1. Gould, Tony. A Summer Plague: Polio and its Survivors, Yale University Press, New Haven & London 1995

SIR BERT MASSIE CBE DL

on occasional weekends. The prevailing view was that hospital was the best place for me. My earliest memories are of nurses in stiff starched uniforms. Instead of warm human scents I was conscious of the clean cold aroma of ether. Nurses try to do things with you, but mostly the medical regime required them to do things to you. I was a small child for some of the time but mostly I was the patient to whom things were

done. However, I do not recall this as an unhappy time. Young children are infinitely adaptable and make the best of the situation in which they find themselves.

My world became a long hospital ward with beds arranged in a long row on either side. They were high and designed to enable the nurses to avoid bending too much. Their design was basic. They had grey tubular steel legs and the base was formed by

springs attached to the side of the frame to which was attached a metal matrix of diamond-shaped spaces between the steel wire. A thin mattress was placed on top. Whoever designed these beds could never have slept in them.

In addition to the ether, the other all-pervading smell was of polish and cleaning materials. In those days medical and other staff knew the importance of hygiene. The floor was highly polished wood, and was it polished! Several times a day, cleaners with large brushes, dusters and machines with round brushes at their base would ingrain an endless supply of polish

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into the wood. One advantage of all this labour was that the floor