Documentary Photographer Stephanie Smith is the Edge of Humanity Magazine contributor of this documentary photography. From her project ‘(Dis)ability;What I have, not who I am‘. To see Stephanie’s projects click on any image.
“I have cerebral palsy and a learning disability. What that is, is when I was born I partially died and they used defibrillators to wake me up and I woke up but I wasn’t responding properly so they said that unfortunately I am partially dead really. I will never walk, I will never talk, I will never be able to do the normal things that normal people do, you know? I was in a baby care unit and eventually I started to improve. My mum told me that she asked the pastor to come and pray over me, so I know that if it wasn’t for him I wouldn’t be here and I wouldn’t be doing the things that I do. That was when I was a baby, obviously they didn’t know me now. So they said to my mum and dad, and I think my younger sister was there, they said that I would never walk or talk, they said I was paralyzed. So I would end up in a wheelchair. You know those people who have saliva and are not able to communicate at all? I was meant to be one of them. Luckily god has another plan for me.”
“When I was 6-9 months my mum took me to Nigeria to my Grandma. I think if I’d stayed here I wouldn’t have been able to walk or talk. They would have just classed me as disabled. They would have helped me, but I don’t think that I would have been here now.
Nigeria is kind of tough, they pushed and pushed and pushed. Apparently I had a hunch back, my back was really really big, very huge, so my Grandma took me to some places, I think they were like hospitals. Apparently, and my Grandma never let me forget this, a big guy stood on my back and they wrapped my body in bandages and walked on me. I was 8 and I began to understand things so she kept on telling me so I didn’t forget, now it’s stuck in my head so I’ll never forget it. She used to tell me ‘you’re special you know’. I think if I would have stayed here when I was born I wouldn’t be like this, I wouldn’t be able to communicate with you as I am right now.”
“When I finish college I want to work!!! Part time, obviously. I want to help people like me. I don’t know how, I don’t know where, I don’t know who will help me get into that but I want to help people like me. My mission in life, and we all should do this mission all together, if we do this mission the world, the community would be a better place, it’s to help one another. Help one another to succeed, push one another to do great things. I don’t know what the futures going to be, but I cant wait.”
“It’s easy for you, you can just go on a train. For me, I have to plan, maybe get a taxi. Not because I’m lazy, because I can’t get on the trains comfortably. The signs are like popping out everywhere. I know how to read but I don’t always know what things mean. I try my best, and I know I shouldn’t but I avoid trains. I avoid things I can’t do or that are difficult. I can’t just decide to go to Wales for example on the train or the coach. I don’t know why Wales, but you know what I mean!”
“When I do come home I have routines. My routines are having a bath, make sure my bones are relaxed. Because they get stiff and tense. They get worse in the winter. I try not to go out a lot in the winter, because it’s so bad. If I have to stay home for a few days, get my strength up, do some exercises, I have loads of bubble baths to relax the muscles. I do that all the time, especially when I fall. Its not only my body that hurts its my bones too. I would break really easily!!”
“Imagine, how do I put it? Imagine a ‘normal’ person right, who, god forbid, gets in a car accident. They can still communicate but their body doesn’t work. Their hands don’t work or they can’t communicate; this is frustrating. Imagine that person, all that frustration that they’re feeling, it would never pass. And they cannot move and talk and they really really want to do things for themselves, that frustration is not based at their carer or the people around them, the frustration for them is knowing that they aren’t able to do anything for themselves. So they get frustrated. And it’s exactly the same thing for us with learning disabilities.”
“Before I was fully independent I had an operation on my calf that left me in a wheelchair and I hated it. Independence is the most important thing in life. Deciding where to go and when. You don’t realize how important it is until it’s taken away”
“You can remember things and I can’t, I think that’s the main thing. And the other thing is I get frustrated a lot because I cannot do something and I need help. I like to be independent but obviously I’ve got a disability so I ask for help and it’s frustrating sometimes waiting for someone to help you for something so tiny. Like being really short and not being able to reach something on a high shelf.”
“Most of the time if I try to just go out spur of the moment, I’ll fall. Or I’ll try and come in and I’ll fall and I wanted to go out. So I have to plan. I couldn’t go out for an entire day because I’d get too tired. If I go out for a whole day, if I’ve been walking, which is not really good for me but I do, I’d have to spend a couple of days at home resting after. If I walk for the whole day I would be very very lucky if I don’t fall.”
Zarah Osarobo,
14/09/1990
London, UK
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By Stephanie Smith
