From a young age I never had desire for a frilly pink chiffon apron existence of motherhood, homemaking and second fiddle to a husband. As a young girl I spent hours with my dad in our garage lifting heavy objects, getting dirty and hauling stuff around our home with our weathered green wheelbarrow. If we had to take a trip to Canadian Tire which was mostly automotive in those days dad hollered up to my room for me, jumping off my bed in a flash taking the stairs by two’s and was out to the station wagon in no time. I was a physically strong girl with good ability for athletics and I equally turned into a woman with the same aptitude and independence, I could accomplish anything physically if I set my mind to it. The truth is I never saw marriage as a goal or a big floral wedding as a dream. I was independent without any desire for marriage, motherhood and I was prepared to lead my own life with a dog or two by my side.
My goal in life was higher learning and becoming an independent professional working woman of Toronto, like my Grandma Hilda Holden, Great Aunt Jane and my Great Grandmother Mary Holden. I was drawn toward the path of arts, it was my true and authentic calling and I was set on becoming an art teacher in a big old downtown school with diversity. I had acquired a wealth of arts education experience in my teenage years. I would practice my art of painting on my own time. This was my life plan.
Happily I did find a soul mate, a life partner and a friend for life who loved the company of dogs as much as I did. Lucky for me he did not have desire for having children, supported my higher education, reading every essay I ever wrote. Yes, the man who has no desire for the company of children knows a great deal about childhood development and behavioural theories, the irony is not lost on me. The best part of our relationship is that we are both artists, seeing the world with our own unique vision. Together we could accomplish anything we worked hard for as long as we supported each other and that we did with dedicated conviction. Our life was unconventional but filled with happiness and The Potatoes at our sides, our three bull terriers at the time.
The morning I awoke with a virus everything changed and all the independence I knew was stripped from me in every possible way. Six months later it was clear that I had Myalgic Encephalomyelitis. A new life was about to begin or lack of life being that there would be years spent in this vacant land of limbo. Little did I know then that I would spend three years trapped in limbo without abilities and the furthest I was able to walk on a good day which were few and far between was, 70 steps to my street corner. My daily self care would all be done by my soul mate and if I wanted any life more than spending it in a bed, I had to accept this and make some life saving changes. Quick, precise and concrete changes. I was born strong with ability to do anything but I lost my independence to a virus.
When you have mobility you think nothing of it. You don’t give a thought to putting on and taking off clothes, picking up something that falls, standing up and down to do a task, walking up stairs whenever needed, reaching high into a kitchen cupboard or taking exercise in your neighbourhood. When you loose your mobility, it is life changing. I haven’t gone past my street corner in a year, a total of 70 steps of walking is my ability due to my conditions, plus the fact that it just isn’t safe during the pandemic. The fact is, I spent most of this year observing the world outside through my living room picture window or my studio window.
My first experience with disability was in preschool as a young child I was integrated with children who had developmental or physical disabilities a program called Play and Learn. When I was an art teacher some my most remarkably favourite classes were teaching DD students in my art room modifying their program to meet their needs in every possible way, these students will always hold a special place in my heart. Now being a disabled woman I believe that there is an important call to action on awareness of persons with disability and mobility aids. A mobility aid is a tool used by a human to aid one in their daily activity, like a backpack to carry books or a step ladder to reach a high place. Mobility aids are just that a tool. A mobility aid doesn’t define the person, it is not who that person is, it is simply a tool. I need the mobility scooter to move around out of my house as I do not produce enough energy for such a task, without a mobility aid the act causes me suffering.
We are talking about are labels, being a former teacher I have never liked labels. Labels are about judgement, a funnel for sorting people into satisfying little categories. There are many judgements made upon those who are funnelled into the category of user of mobility aids. Two years back now I remember using my rollator, which is my super cool walker in our local grocery store. First of all I shouldn’t have been out but I had no medical guidance telling me otherwise a common problem for people who are suffering with ME.
The story goes like this, I would sit at the end of the aisle on my rollator while my husband Brandon went to pick up products. The rude gawking looks I would get were unreal, especially from aged persons grudgingly fumbling about in need of such an aid but living with fixed mindset in judgement of mobility aids. I also recall what I called fitness devotees in designer stretchy clothing and unsoiled running shoes, checking their fitbit steps as they rushed around the store stop with a gawk in my direction and visible signs of judgement towards my mobility aid and the person using it, me. Then with their head held up high in pride for their fitness accomplishments as if they were shaking a newly won gold plated trophy up above their head, they would move on with little mind on their task at hand. I could almost hear the thoughts and sounds escaping from their overworked brains as they rushed away. Little did they know I used to wear fitness gear, counted steps and had some awesome physical fitness accomplishments.
Recently, I was awestruck by Sir Captain Tom Moore a proud 100 year old Englishman in his decorated military regalia taking to walking for fundraising. What struck me were two things really, firstly his mobility aid was the same awesome white rollator I use for walking short distances and secondly he was able at 100 years of age to walk farther than I am able to with my disability at half his age. There seems to be some unspoken about rule that mobility aids are for the aged population or the visible physically disabled person. If people are unable to see with their own eyes why you are using a mobility aid then somehow by the standard of society you should be functioning able bodied without mobility aids. This needs to change, people with invisible disability require mobility aids to live life.
I regained some minor independence, nearly three years to the date of when I became chronically ill and disabled. I stopped driving due to cognitive abilities and overstimulation and sold my car with sadness. Invisible disability is challenging, nobody else sees it. From my perspective mobility aids are life savers, like a bright orange life saving ring, which are aptly called life saving devices. Are mobility aids not a life saving device ? My mobility scooter was scheduled in 2020 when I was diagnosed with severe ME and declared disabled by my specialist. It was put on hold when the pandemic hit and celebrated dearly when it arrived after a years wait.
Today I scooted about in the front street of my house, covering ground like I did as a young child on my bike. I am working on names for my mobility scooter which I will get back to you with. I should tell you I went from slow too fast, down inclines, up curbs to the side walk, did tight circles and just like that I had my independence back. Out there with the wind in my hair, sun on my face not relying on another human for support and care, doing it by myself. Just like I always did, independent Jane is back. I look forward to my small adventures with my scooter, but mostly after three long years I look forward to walking the dogs with Brandon as a family again. I am woman here me roar, if I have to I can do anything.
Whoa, yes, I am wise
But it’s wisdom born of pain
Yes, I’ve paid the price
But look how much I gained
If I have to I can do anything
I am strong (strong)
I am invincible (invincible)
I am woman
~ Helen Reddy
Blog no. 8