Hi everybody The reason that I’m blind is because a gypsy woman cursed me. My disability means everything just takes a little bit longer. The wheelchair and iPad and headwand don’t define who I am. Hi, my name is Alicia Kapa and I am 21-years-old. I was born with spastic quadriplegic cerebral palsy which means my muscles don’t cooperate but my mind is totally fine. I can’t control my arms or legs, or talk, but my mind is just like everyone else . Because I was born with it, I haven’t known much else. I’m physically dependent, so I need someone around 24/7 but apart from that it doesn’t mean too much.
The first thing that happens in the morning is my mum or carer opens my door and one of my dogs comes and jumps on my bed for a cuddle. My morning routine is I get up, get dressed, and brush my hair. Mum: Weetbix? Alicia: Yeah. Mum: And a–and a strong coffee? Alicia: Yeah. My headrest is how I control everything I change speed, direction, raise up and down, tilt back, turn my lights on my chair on and off, and beep my horn by moving my headrest, which flicks through the options on the control screen. Moving my chair is the same.
I move my headrest in the direction I want to go. Because I can’t use my arms, I use the headwand to control my iPad and phone. My iPad is essentially my whole life, as it is how I communicate. I don’t actually view my equipment in any particular light, it’s just part of my life. Obviously without them I can’t do anything, but to me it’s just how I live my life. It’s kind of like asking someone who’s able-bodied how they feel about walking and talking. I have recently become independent from my parents so I have a team of support workers who take care of my physical needs. To be honest I don’t consider much when I go out. To me it’s just normal. It’s just life really. Currently I am working at Yellow, which was previously called the Yellow Pages. I don’t have an official role, but I move around the department so I have been in people and culture, print, credit, marketing, and at the moment I’m in tech. I am studying a Bachelor of Arts, majoring in criminology, and minoring in Māori studies at the University of Auckland. This is my fourth year and hopefully I will be graduating next year in September.
It’s important, because I want to graduate with a degree and get a good job. I am working towards a job somewhere in corrections ideally, but anything helping people is my job goal. Leah is a good friend of mine. We enjoy traveling and going on adventures, so in 2015 we founded a project called Wheely Wacky Adventures where we promote disability awareness through the adventures we go on. Unfortunately last year she moved to Christchurch, so I don’t see her often but we try catch up for a coffee or lunch if she has spare time when she’s in Auckland. I like my house and how it is set up, because it’s open plan which is good because I can get around easily. My parents built the house with me in mind, so there are ramps, wider doors, and my room has a ceiling hoist and an accessible bathroom. I pretty much grew up in this house so it’s just normal to me. I go for a walk every day if the weather is fine with my dog Lex. I enjoy being outside in nature. My favorite pet is my dog Lex, even though he’s naughty sometimes. Everything in my wider community is pretty much accessible mostly because the area is relatively new and modernly designed. I can’t think of anywhere that’s not accessible except for when shops cram everything and I can’t fit You remember what we needed to get today? Some spirulina? We’ll go for a bit of a health kick this week, eh? The thing that’s normal for me that someone pointed out is eating, mostly because it can be messy sometimes, but most people I go out with have learned to wipe my face if I have anything on it. Sometimes I prefer to eat at home if I’m not in the mood for being looked at weirdly. I also have a walking frame which I go in as much as possible. I’m not different to anyone else. The wheelchair and iPad and headwand don’t define who I am nor an extension. They are just there. They are independence and a difference to other people but to me it’s normal.