Welcome to my About Me page.
My name is Joseph and I reside in the bay of plenty. Online I’m known as Defender1995. About 20 and a half years ago I blessed my parents with (you guessed it) me! While most of New Zealand was watching Peter Blake win the Americas Cup. I entered the world, barely alive.
I was born very very sick due to my lack of oxygen during the 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 5 years of my life were very intensive and involved a variety of therapies. Travelling to Hamilton at 1 year of age, I began Conductive Education two times a week. Mum & I did that for almost 3 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 10 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 recognised 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 2 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 because I was no longer the only person in a wheelchair. My Christian faith was further developed, my Poppa is a retired minister and has been a big 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 efficently. This was a long, and at times 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 very good 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 short cuts to predict 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 huge technological progress. My main problem was waiting for a tool that would work for me.
I trialed 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 fully access a standard computer, 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 good 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 realised early on that using a computer opened up a completely new way for me to connect with people.
My older sister, Amy, has been my mentor. She guided me around my 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 lifetime was truly amazing. Steve revolutionised computer products for my generation. My life changed in a big way in 2012 when I was given 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 speak at any time. I still prefer to use my laptop, but there’s an in-built computer system on the device that I use too, I simply bluetooth the Eye-Gaze over to it when I want to use my Laptop. 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 using the Eye-Gaze gave me the opportunity 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 3 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 sussed out pretty quickly that social media was a way for me to partake in a social life a lot more. Facebook is a great 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 to people, especially friends from school. My Gmail is used like any email account. To send and reply to messages, pictures and jokes and to subscribe to organisations. It is also how my Dad & I connect when I’m not staying at his house, I aso use the Gmail chat feature too. My favorite form of social media is Twitter,
It is truly a global community.
Being in contact with people I admire in NZ 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 major event in my life such as my spinal surgery in April 2013, you can find it here. Along with favorite actors and comedians, I have also connected with some of my favorite musicians like Jon Foreman the lead singer of Switchfoot. I don’t feel like I’ve done anything different to any other Teenagers in reference to getting onto Twitter and Facebook. 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 would like to continue developing my IT and business skills with a Polytechnic course and internships. With my passion for Social Media, I’d like to work helping businesses develop their profile in this medium. Using my technology, I am able to use my skills to create an online presence for organisations. 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.