I have cerebral palsy, a disability from birth.
I was brought up by a loving family, who always wanted me to see myself as “just the same as anyone else”.
When I was born, I wasn’t expected to last the night. The doctors told my parents that if I did survive, I would most likely be a “vegetable” (their words not mine). I would be unable to see, hear, walk, or talk.
However, my mum was pretty determined and worked tirelessly on physiotherapy, so that I had as much movement as possible. Before she knew it, I was able to sit up. (in my own way). I would have started talking by this time, and I don’t think I’ve ever shut up!
I started off moving myself around by shuffling on my bum. Eventually, I was crawling at a fast pace! I was in a wheelchair up until the age of 5, when I was given a pair of crutches. People always used to comment about how fast I could move on those.
It was when I was in secondary school that I think I was completely in denial. I was living with my grandma by that time, as my mum had passed away. She was really tough on not letting the disability get in the way. She hated the idea of a wheelchair and would always tell me to “hold my head up high”
Consequently, I used to say, “I’m not disabled, I just use crutches.”
This was my mantra. I completely believed it, and tried to live by it. It was just that when I would see my reflection in the glass doorways at school, it was a big shock to me to see my legs flailing and my ankles flicking.
Because my family was in so much denial, so was I. I wasn’t prepared for the things I saw, for the things I was going to go through as I grew up. I pushed my body to its limits. I was exhausted most of the time, and in so much pain. This continued right into my thirties.
I went to my GP in my early thirties and asked him to tell me to start using a wheelchair. He said that he couldn’t do that, it had to be my decision. I wanted permission to do it. I felt I wasn’t allowed to do it myself.
I remember my mum being told that if she didn’t start using a wheelchair by the time she was 21, she was going to have no choice by the time she was 30. (She died at the age of 45, having been in severe pain most of her life and she was only in a wheelchair by that point, because she had had a fall and hurt her ankle.)
I am now 43, and realise that if I had gone into a wheelchair sooner, I may not be in the situation I am now. I’m using a wheelchair full time, I’ve had to have a baclofen pump implanted (it’s a muscle relaxant.) A box releases liquid baclofen into the spinal fluid.
But, I can say that I have done 3 jobs, got loads of great friends, I have a lovely wheelchair accessible home. Best of all, I have the man of my dreams. There are able-bodied people with all the looks, movement, and money they could desire, but they may not have the love that I do.
So what do I say about the term “differently abled?” in my opinion, it’s bollocks! I don’t agree with the term “disabled” as such, I prefer to say “I have a disability.” I’m not a machine that has had it’s settings changed to stop it from doing annoying things.
Saying that you are “differently abled,” is just hiding behind words that make you feel that you do not have a disability. It’s denial. I say you’ve got to OWN it! Be proud of who you are! People who are overweight don’t say that they are “poundly challenged”, people who have big noses don’t say they are “et nasus-ly challenged”, it’s just a fact.
So, to finish:
Hi everyone, I’m Zoë. I have spastic diplegia. (And by the way, if up to this point you have used the word “spastic” as a derogatory term, please find an alternative.) I have scars all over my legs, one in my lower back and one in my abdomen. I have problems with my eyes that means they can go off in different directions. Having an intimate relationship with my husband is becoming almost impossible, but we do what we can and enjoy it. I cannot shower independently, I can’t even reach below my knees, so if I have an itch on my toes, I can’t scratch it for myself. I see my husband struggle every day with back pain, because of transferring me, but he loves me with such a tenderness. His selfless dedication to my well-being is beautiful and he will continue to be my full-time carer as long as he can. I can no longer use my PC, I have weak tendons in my arms which means that even pointing my finger can pull something so I cannot type. My computer sits in my bedroom and I can’t wait to get rid of it. But I’m stoic and happy-go-lucky, smiley, friendly, positive, motivated and determined. Sure, I have bad days and I get extremely frustrated sometimes but that is rare. As long as I can do the things I can do, I will be determined to do them.
I have a disability. I am not “just like everybody else.” I am different. There are people who have the same struggles as me, but the majority of the population does not have the challenges I face on a daily basis. This is my reality and I’m glad to be me.
Photo taken to demonstrate one of the pieces of equipment that I have been given by the Adult Social Care Access Team at Milton Keynes Council. We were in the bathroom to show other equipment, and the information was printed in the local paper.