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. I’m half Kiwi & half Polish.
My early years involved several different, highly intensive therapies. With assistance from a supportive and loving family (Thanks, mum)!
Due to a lack of oxygen during my birth, I have to live with Cerebral Palsy (Athetoid) in my day to day life. 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. 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”. 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 a good option 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 technology 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 as it calibrates with my eyes and sees exactly where on the screen I’m looking. I can then click on things by maintaining my gaze for over 0.5 of a second on the screen. 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 so that I can talk at any time. I still prefer to use my fully-functioned desktop PC, but there’s an inbuilt computer system on the device that I use too. A USB lead connects the two devices and with TeamViewer I have full access use of both PC’s. The more time I spent on the Eye-Gaze, the quicker I became. It only took me a week to figure it out. I also connect my Android phone in a similar way.
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 of friends. 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 Messenger 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. 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 a significant event in my life, 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 like 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. In 2021 the whole band dedicated a song to me. Just when I thought this was the ultimate experience I then actually met them during their Australian tour. I got to see them perform twice during that tour but the meet-n-greet was just amazing.
I don’t feel like I’ve done anything different from any other young person 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 totally isolated from my friends and wider social media community.
I am now long finished my school years and making plans for my future. I regularly show my life story presentation to schools & businesses and am incredibly humbled by how motivating people tell me they find it. I take particular pleasure seeing school children captivated by it and the questions they then go on to ask. This is perhaps my favourite part of the presentation process as I’m able to interact directly with such a wide section of the community.
With my passion for, & understanding of, Social Media my ongoing plan is to help businesses & individuals develop their profile in this medium. Using my technology, I can use my knowledge to create an online presence for people & organizations.
So, as you can see, being able to access social media has been life-changing for me. I am not isolated from my community of family and friends, in fact my world has expanded. I am now part of a global community where my disability is not a factor.
One thought on “About Me”
Hi Joseph. Wow I’m so impressed with what you have done to manage and overcome your inability to communicate verbally. I am also really in awe of what your Mum has managed to achieve to help you. I am a mother too. I’m 60 years old now, wow that really sounds old! My son Mat was also born with CP and struggled with communication. He used to get very frustrated at times when he wanted to tell us something but we just couldn’t get it.. I really felt for him at those times. It was finally computers that gave him and us a glimmer of hope. We bought him a tablet and he learnt to swipe with his one finger that gave him purposeful movement. He could finally choose what he wanted to watch or music to listen to. He could be in touch with family and friends. Because he was dependant on caregivers to help him get set up to use the tablet he couldn’t use as much as he would like. I am speaking in the past tense because sadly Mat passed away last year from a sudden illness completely un related to cerebral palsy. It’s my dream to write a book about his life and hope that it opens people’s eyes to how people with disabilities face so many challenges and ignorance in life. How we need better resources available for example computers and equipment to assist being included in society. Some of the most basic things can be denied to people due to lack of a sometimes expensive but sometimes simple device or service. I hope I havent bored you stiff ( a cerebral palsy joke, my son had “spastic quadraplegia”) I wanted to connect with you and wondered if I could ask you the odd question from time to time as I’m writing the book to see what you think? I’d appreciate your perpective. please pass on my admiration to your mum . And I think you’re doing a fabulous job of raising awareness and dispelling some widely held beliefs about people with disabilities.
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