Bernie Smith: Wisdom from a Life Lived with Cerebral Palsy

Lucy_Scope

Trigger warning: this article contains ableist slurs that some readers may find distressing.

Bernie Smith got in touch with CP Network to share his story about living with cerebral palsy. Bernie is 88 years old and has lived a life. From being institutionalised, misdiagnosed as “mentally incapable", to travelling and becoming independent. Coinciding with World Cerebral Palsy Day, we wanted to highlight the progress made in the cerebral palsy community.

Early life

“I was born in 1938. Just before World War Two started. When my mother found out that I was born with cerebral palsy she was told that I would have a very short life as doctors didn't know much about this condition at the time. They had the idea that I had mental problems, but my disability is only physical.

“My mother was a working single parent. In my first 2 years of life, I was cared for by my grandma. My mum could not cope with the situation. Then I was sent to institutional life. The place I was sent to was called ColdEast Colony. It was an institution close to Fareham.

“My earliest memories are of a long dormitory with a high ceiling and cots along both sides. At one end were the babies and at the other were toddlers. There were two double doors on one side which led onto a veranda. I remember hearing the rain echoing onto the wired glass that covered the veranda. I was lying in an old-fashioned cot. I could hear the drip, drop, drip, drop of rain onto concrete. Other children were lying in their beds, cots or prams. The rain stopped but it was still cold. There were about 60 children on the ward. Most of them were physically and mentally disabled. Some were left there unwanted by their parents. A lot of them were crying to get attention.

ColdEast was not a hospital. At the time people were put there to be locked away from society. Not to be treated or to get better. It was not the NHS. The way people treated disabled people was very different compared to today.

My mother went to visit me only once when I was about 3 years old. I was like an orphan.

Through the years I was transferred to different wards. I started with the baby's ward. When I got older, I went to live among other kids of about 4 to 8 years old. It was very difficult. I remember being kicked and pushed by the more mobile children.

I have a speech impairment. Nobody could understand what I said. I could hardly complain about what was going on.”

Living with CP Across the Decades

“In 1953 I was transferred to a mental hospital called Tatchbury Mount. The ward I lived in seemed to have two purposes. One was for people with very complex disabilities. They could not walk, talk, and had severe learning disabilities. The ward was also used as a punishment. People that did not behave were sent there. They did horrible jobs, like cleaning up the filth on the floor. You also got sent there if you tried to escape. Those who did not behave were drugged. They were put in a side room with just a mattress on the floor.

You have an idea of how disabled people were generally treated at that time. It was terrible. If you were born with any physical disability, you would be treated as having a cognitive disability.

In my records on those institutions my profile appears as "Imb*cile". Therefore, I did not have access to education. None of my rights were respected.

I took many years to live independently. When I was about 40 years old, I worked with volunteers and social workers. They helped me to express myself and my wishes to get out of institutional life.

After a long time of many assessments, I was accepted to go to live in London, in a place called The Good Neighbours House. It was run by Scope. The Good Neighbours House was in Southeast London, in Camberwell. It was built on a modern housing estate and had three floors. It was a purpose-build residential home for people with cerebral palsy. With the idea of integrating disabled people into the local community - hence its name. There was a shop and laundry facility which the local people could use. The police used to come round sometimes and pay a small fee for an evening meal. The Rotary Club members also came for meals. The proceeds would go towards the upkeep of the home. The unit was run at that time by the Spastics Society (now known as SCOPE) and S.O.S. - Stars Organisation for Spactics. The home was opened by Princess Anne. We would have visits from celebrities every now and then.

It was a bit strange getting used to the new daily routine and hustle and bustle of London after my life in institutions. There was always something going on both inside and outside the house. The problems of urban life were brought home to me when local youngsters broke cars. Sometimes, they would be a break into the house. Once our new bus was broken into.

Nobody went to college in those days. But nearly everyone would attend a local day centre."

Through the years I made friends and travelled to a lot of places. I have even been to America three times. I could finally enjoy my life a bit and have autonomy over my money and my priorities.

I lived at The Good Neighbours until 25 years ago. I then moved back to where I was born, Aldershot. Now, I live in a flat. I have a pension and benefits that can sustain my life to live independently with the help of a live in carer.”

Ageing with cerebral palsy

“Living with cerebral palsy is hard enough. But when you get older you get all the problems associated with older age like high blood pressure, heart problems, mobility problems. With my cerebral palsy, and my associated conditions it can become quite hard to cope with. I noticed my fingers and toes have become bent over the years making my mobility even worse. Having arthritis also does not help. I have lots of pain around my body that tires me.

I am very tough though. Maybe it is because of my background. Having hobbies is important. I like technology, I love my films and music. I keep upgrading my sound system. I like learning about the latest revolutions in science.

A very good thing that happened to me recently was to find out about my family. I did not know anything about my father, not even his name. I signed up for this genetic research years ago. But I did not find anybody. I forgot about it but last year I ended up finding a niece. It led me to find out the whole story about that side from my family. I eventually met my brother. He is called David and lives half an hour from where I live. It was amazing to have met him, and we have kept in touch since then.

Since then, they have come to visit me. We have developed a real connection. We read my memoirs. They always want to know more about my life. The idea of having a family was something I never had before.”

Wisdom, reflections and advice

“To people with cerebral palsy, always speak up. Do not let people limit you. Many people will try to speak for you, but only you know how you feel, and what you really want. It can be difficult, sometimes, it may seem easier just let it go. But do not give up. We are much more than our disability. I always say, don't judge a book by its cover.

I didn't expect to live this long. I ended up outliving everybody that I met in my life and also the members of my family. It is impressive that I am one of the oldest people with cerebral palsy in the U.K. After all, my mum was told I would not live long!”

Thank you for sharing your story with us Bernie.

SaraC_Scope

What a great piece of social history @Lucy_Scope Thank you to Bernie for sharing his experiences on World CP Day.

Santosha12

Reading Bernie's experiences was heartbreaking then heartwarming. An awe-inspiring man whose generously shared wisdom and advice could apply to many of us. I'm so glad he found his niece and then his brother, David.

The cake - 'Bernie and David. Brothers'. Very poignant. Thank you for sharing.