Article by Donna Thomson, disability activist, author and consultant, and user of the Tyze social network.
Technology Became an Essential Tool
In January of 1998, Eastern Canada was hit with the worst ice storm in living memory. For the better part of a week, our house in Ottawa had no electricity. At first, we thought of our quiet and chilly living room campsite as a bit of a lark. We lit candles, sitting by the wood fire and reassured ourselves with storytelling. But slowly, over several hours, I began to steal sideways looks at Nicholas. I felt I might be seeing him clearly for the first time and I was frightened.
It dawned on me that without power, I could not give my boy his tube feeds. He could not tell me his ‘good feelings’ or ‘bad feelings’ using his computer speech device. His frail body was much colder than my own. Without electricity and a myriad of assistive devices, my boy was dangerously frail and completely disabled. After waiting out the ice storm in a warm hotel, I vowed never to take technology for granted again.
Now that Nicholas is 23 and the Great Ice Storm is a distant memory, I marvel at how technology has become an essential tool for well-being in our family.
Sports Media Research Analyst
Nicholas was two years old when he got his first switch operated toys. At four, he graduated to simple ‘PacMan’ style computer games and at aged six, he began using head switches mounted on his wheelchair to control a basic word processor. Today, Nick has a blog and an E-Bay selling business. He is proud of completing three online college courses, including one called “The Study of Sports Online”. His computer is connected to his large screen television and an iPad functions as a speaking device. Nicholas is non-verbal, tube fed and largely bedridden, but his signature block on emails reads “Nicholas Wright, Sports Media Research Analyst”.
Nicholas is totally dependent and requires a small army of professional caregivers, friends and family to keep him healthy and happy. For all that coordination of care and support, I rely on…yes, technology!
The Tyze Social Network
We use a brilliant online social network called Tyze, a kind of highly specialized version of Facebook. Designed to ensure personalized and wrap-around support of a vulnerable person, Tyze is completely private – it even has a vault to securely store sensitive medical documents. It bridges formal supports (doctors, therapists) with informal supports (family, close friends). I can post Nick’s Christmas wish list, while the GP corresponds with Nick’s nurses or me about side effects of a new anti-seizure medication. This is one tool that’s been a Godsend for us.
Social network sites can be used in different ways by different people. I use social media strategically to reduce isolation and to coordinate the help of friends, family and professionals. Because I have an interest in shifting political thinking about giving and receiving care, I have a blog. I use Twitter and Facebook as well. My online tools help me understand that I am not alone in parenting a child with severe disabilities. More than that, each social network allows me a voice to influence and educate society about families like mine. I pay attention to my online friends and work at my relationships with them. Very rarely do I lazily click ‘like’ on their post when I can make a thoughtful comment. My internet friends are my real friends.
For me, I look forward to more, not less, innovation in allowing me to communicate with people I care about. I have managed to create a safe, caring neighbourhood in my social network communities because I work at it. I guess I am just one of those people who is not lonely online or off – I’m happy and I’m grateful for my laptop.
Donna Thomson began her career as an actor, director and teacher. But in 1988, when her son Nicholas was born with severe disabilities, Donna embarked on her second career as a disability activist, author and consultant. She is also an acclaimed author and an active blogger on her blog donnathomson.com. Her latest book, The Four Walls of My Freedom, has received global recognition for its challenging exploration of capability, interdependence and the dignity of caring. She is passionate about finding ways for families’ communities and governments to work together to care for most vulnerable citizens.