My name is Joseph. I was born in 1995 and reside in the Bay of Plenty. Online I’m known as JosephReidNZ. I was born with Cerebral Palsy (athetoid) and use technology and social media as my primary method of interacting with the world.
My early years involved several different, highly intensive therapies. With assistance from a supportive and loving family (Thanks, mum)!
Very sick due to my lack of oxygen during birth. As a result of that, I have to live with Cerebral Palsy (Athetoid) in my day to day life. I’m half Kiwi and half Polish. In the very first days of my life, I had to stay in Tauranga hospital, because I was very sick. The first five years of my life were very intensive and involved a variety of therapies. Travelling to Hamilton at one year of age, I began Conductive Education two times a week. Mum & I did that for almost three years. This is a program from Hungary and is predominately for children with Cerebral Palsy.
I sat in a Hyperbaric Oxygen Chamber (dive chamber for the “bends”) to try and improve the oxygen levels in my blood. After Conductive Ed, I had volunteers help me do exercises at home ten times a week. As I grew, I started to learn to drive my first Power Chair when I was still at Kindy! I lived in a small rural community, people recognized me and got to know me… But I couldn’t connect to people with a conversation because I am non-verbal. I wasn’t quite ‘world-famous in NZ’ like L&P, but Mum often said I was world-famous in Omokoroa!
I started at the local country school when I turned 5. Not long after, I made the papers using my new Hart Walker. The walker was 1 of my two main activities, keeping me physically active, the other being swimming, which I still do weekly. During Year 7, I initiated going to a bigger school and began attending Bethlehem College. One reason I liked it there was that I was no longer the only person in a wheelchair. My Christian faith was further developed. My Poppa was a retired minister and has been a significant influence in my life. My teacher aides helped me do the school work, but it was hard as I couldn’t talk, and there was no technology that ‘fitted’ me, and supported me to communicate efficiently. These were a long and, at times, a frustrating period that has gone on for most of my school life.
I have a good brain for thinking, but my body won’t listen to the messages to my muscles. My eyes are perfect, and probably my most important body part. Mum and I developed a good way of communicating using my eyes, which we call “blink spelling”. Blink spelling means I blink through the alphabet until I get to the letter I want, and spell words out. Mum has developed shortcuts to predicting words, and I sometimes “draw” letters, so we’ve got pretty quick over the years. People who are with me a lot get to learn it too. Some people just read my facial expressions (I am very expressive)! And ask me yes/no questions. Luckily I’ve grown up during a period of substantial technological progress. My main problem was waiting for a tool that would work for me.
I trialled clicker buttons on my knee, hand, and chin, but these made me work so hard for very little progress. My first success was when I used the clicker program to access a standard computer fully; I used this for several years. It involved a grid on my computer screen which scanned directional arrows for the mouse, as well as left and right-click options, this combined with an on-screen keyboard meant I could finally use a computer. The clicker was right at the time, but it took me a long time to move around a page and often left me hot and sweaty from all the exertion. I realized early on that using a computer opened up an entirely new way for me to connect with people.
My older sister, Amy, has been my mentor. She guided me through the initial setup of my online presence. As I started my internet journey, I became very inspired by Steve Jobs, the man behind Apple. What he aspired to and achieved in his short life was truly amazing. Steve revolutionized computer products for my generation. My life changed in a big way in 2012 when I received an Eye-Gaze computer! The Eye-Gaze system is much faster and uses a lot less of my energy. The Eye-Gaze calibrates with my eyes; I can then click on things by maintaining my gaze on the screen while a loading clock completes. The main thing is that it has to be set up correctly. This means it needs to be at the right height and distance from me to calibrate with my eyes. I can also type words, and it will speak for me through the speaker. I have pages of vocabulary which I have customized to my preferences that I can talk at any time. I still prefer to use my desktop, but there’s an inbuilt computer system on the device that I use too, I simply plug a USB lead into the desktop the Eye-Gaze over to it when I want to use my desktop. The more time I spent on the Eye-Gaze, the quicker I became. It only took me a week to figure it out.
I found that using the Eye-Gaze allowed me to share my humour and connect with people and ideas. Before I had my Eye-Gaze computer, I was able to go online, but I wasn’t able to type nearly as fast. For example, I could only “Tweet” about three times a day using the Clicker because it used to take me about five minutes to write one sentence. Using the Eye-Gaze computer is my access to the world because I am non-verbal people can’t readily understand me face to face. Connecting online allows me to communicate and create my community. I have been able to get myself and my personality out there, away from the physical barriers I have. I understood pretty quickly that social media was a way for me to partake in a social life a lot more. Facebook is an excellent medium for friends and family to keep in touch. They see what I’m doing and enjoying, and I can see what they are up to. I use Facebook mostly to have chats with people, especially friends I went to school with. My Gmail account is used like any email account. To send and reply to messages, pictures, and jokes and to subscribe to organizations. It is also how my Dad & I connect when I’m not staying at his house; I also use the Gmail chat feature too. My favourite form of social media is Twitter. It is truly a global community.
Being in contact with people I admire in New Zealand like Dai Henwood and Jeremy Corbett from TV’s 7 Days led to me meeting them in person. I even created a Twitter account for my followers to keep up to date with this significant event in my life, such as my spinal surgery in April 2013, you can find it here. Along with favourite actors and comedians, I have also connected with some of my favourite musicians like Jon Foreman, the lead singer of Switchfoot. Another band I link is Anberlin, I got lucky when the lead singer, Stephen Christian, did a live video on Facebook, where he sang a song just for me! I don’t feel like I’ve done anything different from any other Teenagers about getting onto Facebook and Twitter. I’m just an ordinary person to other people on Social Media. The benefits of using the Internet for me is I communicate with people who I wouldn’t be able to otherwise, because of my disability. As you can imagine, there aren’t many computers like mine in New Zealand, and not many people who can fix problems when they happen, when mine breaks down, I’m isolated from my social media community.
I am now finished my school years and making plans for my future. I am doing motivational speaking (presentations) with my life story. With my passion for Social Media, I’d like to work helping businesses develop their profile in this medium. Using my technology, I can use my skills to create an online presence for organizations. So, in summary, being able to access social media has been life-changing. I am not isolated from my community of family and friends, my world has expanded, and I am part of a global community where my disability is not a factor.