Guest blog from Paula, who contacted our helpline earlier this year after learning she had cerebral palsy – at the age of 60. Until then, she had never received any kind of support. Here she shares her experience.
In January 2015, soon after my mother died, my sister called me and told me there was something she needed to tell me – that I have mild cerebral palsy, and that my mother had never told me. I am 60 years old, and I had known nothing about it until then.
I went to my GP and asked him to read me the medical notes from my birth. Sure enough, there it was.
My mother and I had not been in touch for 23 years, for many reasons. I will never know why she didn’t tell me.
There was more of a stigma around disability at that time, so maybe that was a part of it. Or perhaps she thought that because I didn’t need a wheelchair or anything, it wasn’t worth doing anything about. Attitudes were very different then.
Not knowing about my cerebral palsy has made my life a lot more difficult than it really should have been.
My movements are awkward and slow, meaning I need extra time to do things. My speech also causes me difficulties. When I’m tired, it’s really hard for people to understand me – almost impossible if I’m exhausted.
But all my life I blamed myself for my differences, and thought I was just clumsy and slow. I drove myself into the ground trying to keep up at work, and that took its toll on me emotionally. When shown a job, it takes me longer to learn, and it often resulted in people getting annoyed with me.
I was never offered any extra support when I found things difficult. In one job, my colleagues would go home after they had finished their work, leaving me to finish my part alone. A supervisor once said she ‘felt like shaking me’.
I always tried to remain positive and upbeat, but it had a huge impact on my self-esteem and confidence. If I had known more, I think I would have stood up more for myself. And I could have asked for support with things such as my speech, which would have made a big difference for me.
I rang Scope within a fortnight of finding out, and they sent Olli, a regional response worker, out to visit me. I thought she would have no time for me, but she came out the very same week. She said she had never met anyone who didn’t know about their condition until my time of life.
Olli has been fantastic, and having her information, advice and support has been excellent. I have sought out speech therapy, which has greatly improved my speech. I have also had physiotherapy and seen a continence nurse, and I have had rails installed in my bathroom.
And just having this knowledge about myself has changed my life for the better. I feel much less agitated. I always felt I needed some kind of help, but I never knew what I needed or who to ask.
I feel the things I have had to deal with in life have made me focused, determined and positive. I’m more aware of other people’s problems, and how they are feeling. I just wish I had known sooner about my condition, and I very much hope this wouldn’t happen today.
Attitudes to disability have changed since Paula was young, but did you know that until 1995, it was still legal to discriminate against disabled people? Read more about our work to mark 20 years since the Disability Discrimination Act.