What it’s Like to Have Cerebral Palsy

Hi, my name is Mackenzie. Today, I'm going to show you what it's like being a teenage girl with severe cerebral palsy. I'm just an ordinary teenage girl who has to rely on other people and technology to live a normal life. Toast? Two pieces? Peanut butter or jam? Jam? Let's go! One jam, one butter? I think people see a disabled little girl, really, she's little. I don't think they see a nearly 17-year-old young lady. I think they probably think that she has an intellectual disability as well, especially because she can't talk and only makes noises. I think when people first meet me, they are worried. They don't know what being in a wheelchair and talking through machinery means. I think they probably think I am intellectually slow because of all the equipment I have and because I cannot talk back immediately. We've got three girls, and Mackenzie certainly requires a little more attention in terms of things like brushing her hair and helping her get ready for school and those sorts of things. But she's fun, funny, and engaging, and I can share things with her, and equally, she shares her thoughts. She's always been quite willing to put her thoughts forward and share those. She's not shy in coming forward. What's one thing that other people have to do for you that you would love just to be able to do for yourself? Mackenzie is able to pre-program answers into a computerized talker. She has stock words, but if she needs to express something, she'll type it letter by letter using her big toe. Take myself to the bathroom. Then I could go at school. Yeah, I can understand that. That would give you that little bit more independence, wouldn't it? We don't have anyone outside the family helping. Amanda's parents provide a lot of assistance for Mackenzie, especially in terms of before and after school. I guess just caring generally, we take responsibility for her, but she's pretty independent. She does her own work, her own homework, her own study, goes on the internet, goes on her mobile phone, texts friends, those sorts of things. So it's not like we're needing a lot of support. Well, it's just what it is. I mean, we've done it since the day she was born. There's never been a time when we haven't had to feed her breakfast, lunch, and dinner. I guess her going to school is quite nice because it means it's one lunchtime. It's just the way it is. It's not a burden. I see myself as being normal because I have been different all my life. Amanda and Neal sensed something was wrong soon after Mackenzie was born, nothing they could put their finger on and nothing the doctors could confirm. I remember at the hospital they told me, because she couldn't feed, that she was just contrary. I mean, how could a two- or three-day-old baby be contrary, for goodness' sake? By seven months, Mackenzie was plump and happy but had low muscle tone. Mackenzie rolls over, but she doesn't roll continuously, she just rolls once. This was Amanda's second baby; she knew the milestones. And our goal is to be sitting by one! Mackenzie could bear her own weight, but Amanda was convinced something wasn't right. As the months went by, Mackenzie just didn't progress beyond the sitting stage. We suspected it was cerebral palsy just from what I read. At nine months, doctors diagnosed cerebral palsy. That still didn't tell them what the future might hold for Mackenzie. But then, it's all very vague anyway. You know, she might walk, she might not. She might talk, she might not. One step, two steps. I was sad that she wouldn't walk, and Neal was more sad she wouldn't talk. Day by day they encouraged Mackenzie, but never put limitations on her. One, two, three! And we did resist putting her in a wheelchair for a long time. She didn't go into a wheelchair until she was at school because I wanted to keep her, not as 'normal' as possible—that sounds awful—but I wanted to keep her, I knew she was going to be in a wheelchair all her life, so I didn't want her to have to have been in it when she was two or three. Say 'hi mommy!' Wave to the camera! Looking back now, just having the use of her arms would be good. Even the use of her arms would give her, you know, she could feed herself, clean her own teeth, brush her own hair, use her talker with her hand, instead of a foot. You know, her life would be different again. Life's a constant compromise for Mackenzie. She's happiest when she's in her power chair. She's in charge, driving the joystick. But much of the time, especially when the family goes out, she has to transfer to a manual chair and get pushed around. Not ideal for a girl who seeks independence. But if she wants to talk, her manual chair is the one rigged for her TalkLink computer. You come across as a really positive person and don't let much get you down. Is there anything that you find frustrating about your disability? Everything about my disability is frustrating, but if I was to be frustrated all the time, my life would be wasted. Staying positive allows me to have an enjoyable life. One thing that is really good, I suppose, for you is that you have this, but I wonder if you can imagine what it would be like without this device. Have you ever thought about that? Without technology, I would have no independence. I would have to rely on people pushing me in a manual wheelchair all day, and my communication would be very limited. This probably would mean that I wouldn't be having a mainstream education because I'm intellectually capable, so I don't need to live my entire life on the benefit. Calculus, or algebra? Mackenzie is in year twelve at Rangitoto College. She's taking a full academic course of five subjects. She's still reasonably strong and has core muscles, so she chooses to work like this on the floor, three to four hours a night. Mackenzie types her homework into a computer, letter by letter, using that big toe. Do you want this? Is it frustrating? What are the rewards for the extra time you do? I get the same rewards as other students. I never feel that the long hours I put into my homework and exams are being wasted, because I know that these hours are going to get me to university, where I want to be. Mac, how did you get on with the NCEA? Okay. She got level one, endorsed with merit. Mackenzie gets extra time for exams; the pressure takes its toll. English took six hours of toe-typing, and left her with a nasty blister. English was a mixture of 'achieved merit' and excellence. Fantastic! You put a lot of work into it, Mackenzie. Is it worth it, though? Mackenzie's NCEA grades are good, but she believes she deserves better. She's angry about the discrimination she's faced. In NCEA level one English, they have to do a speech. We thought it had been decided that Mackenzie wouldn't do it, and then she was told she had to do it. So, she put her speech together; she delivered it to the class, obviously through her talker. 'Have you ever been frustrated?' The teacher thought it was great, gave her an 'excellence'. Are you frustrated right now about something? Someone else in the school, with a high position, decided that no, she wouldn't be able to get it because it was done through the talker. I can assure you, you are not the only one. I contacted NZQA, and they said no; she didn't meet the criteria. They took the complaint to the top, to the Minister of Education. We took it to Anne Tolley, and she got a group of moderators, English moderators, to go into the school, and Mackenzie had to repeat the speech again, but then they changed it. They told us that if the school had put in a submission of how Mackenzie was going to do the speech and how they were going to cover it, then that would have been alright. Mackenzie was very angry about that because the school had no idea that it was supposed to do that. We had no idea. She had no idea. It's been a year since she delivered the speech, and Mackenzie still hasn't been credited. She's still fighting and wants to take the complaint to the Human Rights Commission. Does she deserve those three credits? Absolutely. No doubt in my mind. So Mac, what about making friends or keeping relationships? Is that easy? At college, if you're disabled, your friends are disabled. And what do you think about that? It is obviously not a dream situation, but diverse friends are better than none! I think you're right, I think teenagers especially are kind of self-conscious, right? They are too scared of what it might mean to have a disabled friend. I think the frustration sometimes must simply be at the speed that you're able to respond. Someone asks you a question, or you're part of a conversation, the conversation moves on, and you are still trying to frame your answer through your talking device. It's kind of a feat, relationships, because life's pretty hectic-paced, and if you're waiting for someone all the time to say something and you can't actually hear them, or you can't understand the talker—some people find it hard to understand the talker until they get used to it. I think she's missed out on a lot of good friendships. I think she gets a bit frustrated at times, and she'll have a cry and get it out of the system and just move on again. She doesn't always say what it is. The other kids at school are probably getting their driver's license, going to balls, and going and doing things, which isn't really her anyway, but it might have been.