C is for CP (Cerebral Palsy)
I am life long disabled (a full time wheelchair user) because I have Cerebral Palsy or CP. I wouldn’t be who I am today if I didn’t have it so what else would I write about for C in what I’m calling the A to Z of Emma? (well, actually there was something thought about but then I realised that topic under a different name would do for a letter I was stumped on so…)
Here are five things I’d like people to know about CP
- CP is caused at or shortly after birth and is brain damage. There are many different types and no two people with CP are the same even if they have the same classifcation. I have spastic CP and it was caused by being born six weeks early and deprived of oxygen during birth. There has been a lot of debate about whether my CP is spastic diplegic CP or spastic quadriplegic CP. Diplegia/quadriplegia relate to the parts of my body affected and I know from friends with CP debates about those classifications are common.
- There is no cure and if I were offered one I would turn it down – I’ve literally never known any different than a life on wheels and I’m not sure I’d know how to cope if I suddenly didn’t need them any more.
- When people ask me what I’d do if I didn’t have CP or if I make a choice and they question “is that the choice you’d make if you didn’t have CP?” I get confused and can’t answer. Because I do have CP and Emma without CP would be a completely different person with different life experiences and needs and probably likes and dislikes so the question is moot. It’s a bit like me saying to someone non-disabled “you want coffee? Would you still want coffee if you were disabled?” It wouldn’t make any sense.
- I do not suffer from CP and I’m not “wheelchair bound”. I have CP. How can I suffer from something that’s my normal and that I’ve not known any different to? And my wheelchairs set me free. They’re what gives me my mobility and my independence (I can walk a few steps but use my chairs full time by choice for safety and independence walking couldn’t give me. And I can get out of my chair. The only wheelchair user for whom wheelchair bound would be appropriate is the one who practices bondage using their chair. And that’s not me.
- Having CP is OK and I don’t need your pity. A lot of the time what I find hard isn’t the physical barriers that can get in my way (I have lots of practice spotting those before they become and problem and working round them where possible) but the attitudes of people around me the way I’m treated. Last year a theatre I’d been to a lot had a broken lift when we went for my birthday treat. I was left feeling I could never go again not because the lift had been broken but because of the way I was spoken to by multiple members of their staff, how they implied not seeing the show was my choice and acted as though their having a lift for me to use was a luxury.