From my Professional Profile page, you can read how it is that am involved with digital and social media. It is a large part of my day job. And I respect social platforms, for information and interaction: it's how I've kept in touch with people around the world, which is especially important for a girl who left her hometown of Vancouver, BC, Canada, at a fairly young age, for a new location in Perth, Western Australia. That was 1994.
A couple of years later, my very good friend came to visit me in WA - and we had a fantastic time, until the car I was driving on a gravel road flipped on a corner. My friend became quadriplegic as a result of that accident. It was the first time I became familiar with disability. You can read more about our experience from her point of view, mine and that of an onlooker: Access All Sides blog (not quite updated - but the essential story is there).
But that's not why I have a personal and daily understanding of disability. Less than ten years later, in 2005 I found myself once again wishing I could wake up from a nightmare. I nearly collapsed into my husband's arms from grief when our second-born son, at 7 months old, contracted meningococcal septicaemia causing cardiac and respiratory arrest resulting in severe brain damage. Our son lived because of intensive medical intervention and lived with complex needs including the need to use a wheelchair for full-body support and all mobility. He is quadriplegic cerebral palsy GMFCS Level V with high needs: non-verbal (or alternatively verbal - housing alternative communication: AAC), PEG-fed, epileptic and cortical vision impairment among other things. But it was a wonderful life, full of love for friends and family, joy in adventure and the outdoors, and enjoyed a particularly dark sense of humour. A little bit more is written about our boy and our mindset in an article from 2018: Look not to presume competence - look at what you can learn about it. Our AwesomeE (Evan) passed suddenly and unexpectedly in 2020, and he lives on in the community and through family and friends who were fortunate to have shared a moment in time with him. There are many stories for other days.
We experience many sides, or points of view, of accessibility and maintaining a positive attitude towards ability (#AntiAbleism) and who we are (sometimes that positive mindset is challenged). I'm interested and passionate about how we interact with people and information and what impacts and influences our points of view. Lived experiences help. Talking and listening to others helps. Being empathetic and compassionate is valuable.
In addition to the above, I have also had the privilege of spending the final four months of my mum's life with her as she faced end-of-life due to pancreatic cancer. I flew to Vancouver, worked my day job remotely from her home's study/office (at the time, Digital and Communications Manager with Harry Perkins Institute of Medical Research) and provided palliative care along with my sister and the assistance of palliative nurses and doctor visiting our home regularly. I value a promise given, and the right to live and die with dignity and on one's own terms. Que sera, sera - and cheers to my mama.
It’s a long way from 1996 these days. Not so much in years as it is in the depth of personal development through life's experiences.. You learn a lot about yourself and about the people around you throughout life, and through the touch points and tools used to seek, gather, interact with and exchange information.
That leads me to where I am today: (all that professional day job stuff, and...)
Although I no longer continue my PhD studies, feel free to get in touch via email or on my socials. Stories are good to share.
A couple of years later, my very good friend came to visit me in WA - and we had a fantastic time, until the car I was driving on a gravel road flipped on a corner. My friend became quadriplegic as a result of that accident. It was the first time I became familiar with disability. You can read more about our experience from her point of view, mine and that of an onlooker: Access All Sides blog (not quite updated - but the essential story is there).
But that's not why I have a personal and daily understanding of disability. Less than ten years later, in 2005 I found myself once again wishing I could wake up from a nightmare. I nearly collapsed into my husband's arms from grief when our second-born son, at 7 months old, contracted meningococcal septicaemia causing cardiac and respiratory arrest resulting in severe brain damage. Our son lived because of intensive medical intervention and lived with complex needs including the need to use a wheelchair for full-body support and all mobility. He is quadriplegic cerebral palsy GMFCS Level V with high needs: non-verbal (or alternatively verbal - housing alternative communication: AAC), PEG-fed, epileptic and cortical vision impairment among other things. But it was a wonderful life, full of love for friends and family, joy in adventure and the outdoors, and enjoyed a particularly dark sense of humour. A little bit more is written about our boy and our mindset in an article from 2018: Look not to presume competence - look at what you can learn about it. Our AwesomeE (Evan) passed suddenly and unexpectedly in 2020, and he lives on in the community and through family and friends who were fortunate to have shared a moment in time with him. There are many stories for other days.
We experience many sides, or points of view, of accessibility and maintaining a positive attitude towards ability (#AntiAbleism) and who we are (sometimes that positive mindset is challenged). I'm interested and passionate about how we interact with people and information and what impacts and influences our points of view. Lived experiences help. Talking and listening to others helps. Being empathetic and compassionate is valuable.
In addition to the above, I have also had the privilege of spending the final four months of my mum's life with her as she faced end-of-life due to pancreatic cancer. I flew to Vancouver, worked my day job remotely from her home's study/office (at the time, Digital and Communications Manager with Harry Perkins Institute of Medical Research) and provided palliative care along with my sister and the assistance of palliative nurses and doctor visiting our home regularly. I value a promise given, and the right to live and die with dignity and on one's own terms. Que sera, sera - and cheers to my mama.
It’s a long way from 1996 these days. Not so much in years as it is in the depth of personal development through life's experiences.. You learn a lot about yourself and about the people around you throughout life, and through the touch points and tools used to seek, gather, interact with and exchange information.
That leads me to where I am today: (all that professional day job stuff, and...)
Although I no longer continue my PhD studies, feel free to get in touch via email or on my socials. Stories are good to share.
