Lee wrote his own story.
Hi, my name is Lee Ugle and I have Cerebral Palsy (CP).
I was born in 1942, the second last of six children. My mother was told I would be lucky to see my thirteenth birthday. I am now 68 years old and the only sibling still alive.
My mother did not want to send me to school because she thought people would knock me over. We lived in a small town with one school and one teacher. I was too slow to keep up with the other kids so my teacher organised me to come down to Spastic Welfare in Perth. There wasn’t a Centre for Cerebral Palsy in those days.
It was great living in Perth because my family would try to wrap me in cotton wool at home. I am physically disabled, not mentally disabled and I was not allowed out of the front gate. After I completed my school in Perth, I had to go back home to Quindanning because there was nothing for disabled people to do. The facilities we have now were not available back then.
When I was 21 I left home, as being 21 and still under my mother’s care, she drove me around the bend. I came to Perth and started working for Goodwill Engineering. I joined the Workers Committee and the Health & Safety Committee.
At the time I was told that, “You have to educate people outside about disability”. I said you also have to educate the families of people with CP because they are sometimes overprotective of their loved ones.
When I first started working I lived in a hostel in Innaloo. I lived there for 15 years. Later two of us (hostel residents) moved into independent accommodation with a co-resident carer. We were the first ones to take that brave step. I loved that independence. We lived together for about 18 months.
Over the next couple of years I shared accommodation with a mate then finally got my own flat in Maylands. After five years I moved to another flat in Mount Lawley and stayed there for five and a half years. My final move was into my own two-bedroom unit in Bayswater. I have been here for 18 years.
In the early days it was hard and I lived on a very strict budget while I bought all the furniture I needed. Today I have everything I need—all the latest technology and mod cons. I have paid for everything myself and can honestly say I’m a self-made man.
I worked for Goodwill Engineering for 41 years. All that time I was catching public transport to and from work. Working gave me some independence as the money was earned by me. I made some great friends. I recently retired and am now enjoying being a man of leisure.
I am now a consultative member of the Ministry Advisory Council for Disability in WA. I give talks to children in local and country schools and tell them about my life. I also talk to new staff at the Centre for Cerebral Palsy every two months.
I recently enrolled in an Effective Communication course which, along with my life experience, will help me to interview and employ the best people for support worker roles.
I used to fall over regularly and the physio and doctors told me that I would have to go in a wheelchair because of my disability. After a few more tests they found out I had high blood pressure and cholesterol. Since then I have been fine. It wasn’t my disability that was wrong with me but a normal problem that everyone can face at some time in their lives.
I have seen a lot of my school friends in wheelchairs. There are not many still walking. I have a scooter to get around long distances but I can walk fine for the short distances. At first I thought a scooter would make me lazy but now I love the independence it gives me.
I sometimes have problems in getting on trains with my scooter as the older platforms are not level with the train. Transperth now provide a ramp that you can call ahead for.
Disabled toilets are another problem for people with disabilities. I have seen people become locked in because the toilets doors are too heavy to open. The community at large needs to be made more aware of the difficulties faced by people with disabilities. Getting other people’s understanding is sometimes the worst part of CP.
My carers are very important to me. One of my carers had been with me for 13 years. Before Mandy came some people would try to walk all over me. She gave me the courage to speak up and not to let other people rule me.
I have been a client of the Centre for Cerebral Palsy (TCCP) for around 58 years. They offer various services to me that help me in my everyday life. They organise my OT visits, physio visits, podiatry services, exercises and various other services including ensuring my home is safe for me. It would be very hard to live without the services provided by TCCP.
It takes me a while to do things that most people take for granted as easy and a part of normal life, but I manage. I have people around me who care for and love me. I go to the football and shops. I spend time with my family and friends. I even fell in love with a woman with no disability. She loved me for who I was and not what I could or couldn’t do. That is a rare quality in anyone.
I do much of the same things that you do, and to me that makes me just like you. Recently I had a holiday in Bali even though people said I would find it too hard to get around. I had such a good time I made a PowerPoint presentation for the Advisory Council for other people to see that if they want to do something, they can.
I have a fantastic network of friends and supporters in my local neighbourhood. This is something that is very important for my wellbeing in the future. I have developed these friendships over the 18 years I’ve lived here.
When I first moved into the area I always spoke to my neighbours and gave them opportunities to get to know and like me. In the early years I would put on a Christmas BBQ for a few friends. Now the gathering has grown so big that my neighbours got together to erect a bigger patio area so that we could all fit in.
As I’ve grown older I have had to make adjustments—like increasing or changing physio, upgrading or changing equipment—generally making allowances for the aging process. I am planning to remain independent in the future.
© Lee Ugle 2011. Except as provided by the Copyright Act 1968, no part of this publication may be reproduced, stored in a retrieval system or transmitted in any form or by any means without the prior written permission of the author.