Georgia Hamer is 29, and is a passionate advocate for greater understanding of Cerebral Palsy. She tells us her story.
My CP affects me in every way. I have a condition called PVL (Periventricular leukomalacia) and that affects my entire motor function. Basically, there are massive holes in my brain, and the messages get stuck down the holes. So, either my body will click out a lot, or it won’t do what my brain asks it to do.
I have spastic athetoid quad cerebral palsy, which is two types of Cerebral Palsy in one. I have static Cerebral Palsy in my arms and my legs, but I also have, aspiration Cerebral Palsy in my torso. That means that I can’t really get up and I need a tool, because otherwise I end up flopping over. I use an electric wheelchair for nearly all my movement, and I use hoists and stuff to get around when I’m not in my chair.
I live with my parents and I have a care team for when they’re not around because I require someone 24 hours a day.
On growing up with CP
It was quite challenging. Educationally, I’m fine – my CP literally just affects me physically. Growing up was quite challenging because I didn’t fit into any bracket. I was too physically disabled for the mainstream education system, and not disabled enough for the special education system. I fell down a kind of black hole – no one really knew what to do with me.
My CP has a vast effect on my physical ability, but no effect on my mental capacity. In that respect, I’m a normal 29-year-old.
I stopped education at 18 when my body decided it was going to demand so much that I could end up having to have spinal surgery – I could have possibly died.
On being an advocate
I try and get across that people with my conditions and at the severity level that I have it can do a lot more mentally than people assume that we can. As soon as people see my wheelchair, and the personal assistant I have with me all the time, they automatically assume that I can’t communicate or don’t know what’s going on around me, when I have a fully functioning brain. I need physical adaptation and the help of people 24/7, but I try and get the word out that it’s not all doom and gloom and I can do a lot of stuff even with the support I have.
I just think everyone needs to understand what CP is, and how it can affect people. And how it also affects people so vastly differently. I have friends that have CP and some of them are better off than me, with more function, and some are worse, but we all get tarnished with the same brush: the minute they see wheelchairs, walking aids and the like, they say, ‘oh, they can’t do it’ – but we can.
If people understood it, I think the world would be better – I wouldn’t have to keep asking, ‘oh, can I actually get into that venue?’ More knowledge about the condition in general would really help.
On her current challenges
There are many times when I feel fed up about having CP. I’m fully aware that I’m missing out on “normal” life, and I’m missing out on going to university, going out with friends, having a partner, doing all that sort of thing. I have a fair few down days and diagnosis of mental health issues that come along alongside the CP, and are also a direct cause of the CP.
I have a diagnosis of PTSD (Post Traumatic Stress Disorder) because of all the procedures and operations I have had to have. There’s a definite correlation between my CP and my mental health because the two go hand in hand – whenever my CP is worse, my mental health is worse and then because my mental health is worse, my CP is worse – every time I get anxious or angry or emotional, the pain goes up in my body and it makes life not the easiest to handle.
On what she most enjoys
I’m happiest when I’m out and about and seeing people that I know in my community and talking to them and just being recognised for being me and being a 29-year-old into art and music, and having friends in that area of the world, and going to festivals. Just being seen as me and not seen for my wheelchair. I quite like it when people don’t always realise that I’m in the situation I’m in. Just take me as I am, see what I’m actually interested in, and not my condition.