2020…the year that was….

So here we are nearing the end of what has been an incredibly challenging year, I can feel myself breathing a sigh of relief, it has been a long year, full of the unexpected for all of us, peppered with surprising moments of joy and celebration, in amongst the struggles and uncertainty. It also ends the 40th anniversary year of an accident that changed my life forever, that one split second that you can never plan for, and never imagine happening to you…the day I became a paraplegic and a wheelchair user. The anniversary day itself was a typical one, it came and went, without fanfare, and I didn’t share its significance with others.

                       

As I write this on New Year’s Eve, I’m not sure now, if I should rush out and buy myself champagne to acknowledge the year gone by and to mark what I had always thought would feel momentous; acknowledgement of forty years living a new an unexpected life… and yet here I am, another year passing, no fanfare, no cakes, no champagne, just moments of quiet reflection to mark this occasion.

Looking back on those initial six months of rehabilitation; some memories are tinged with a touch of sadness – that moment when the doctor tells you that you will never walk again, which for me was something that I had already considered in my mind. I just knew that whatever had happened to me was serious. However, being told this at 15 by a Doctor (who had an entourage of student doctors standing outside the curtains listening) was not something I will ever forget. I went quiet and asked to be left on my own for a while. I remember having a little cry, and thinking about basic things… wanting my mum and dad, how was I going to play basketball, would I ever ride a horse again, what would happen now? But I also remember knowing that one thing was certain… I did not want to miss out on anything. I remember feeling weird, because I felt the same as I always had, yet knew I had just entered a whole new world without a map, acquired a label I didn’t want and just wasn’t sure what “being disabled” was meant to feel like.

I also remember knowing that one thing was certain… I did not want to miss out on anything. I remember feeling weird, because I felt the same as I always had, yet knew I had just entered a whole new world without a map, acquired a label I didn’t want and just wasn’t sure what “being disabled” was meant to feel like

I recall those nights and much of that long six months journey learning how to do many basic things again, how to get dressed lying down, getting in and out of bed, learning the bladder and bowel regimes, how to get in and out of a car, not being able to do things I had always taken for granted like sitting up unassisted, going to the beach, reaching the top shelf, pulling up a pair of pants, I remember falling out of my wheelchair for the first time, learning how to swim again…. So many firsts.

Often, I struggled to cope with this new “normal” that felt often like a coat that didn’t quite fit.

I remember feeling amazed that from the moment I became “disabled” (yet felt remarkably like the same person I had always been) there were unwritten sets of rules to live by; how to behave, where you could go, and even what you were supposed to wear! I had no idea that these unwritten rules also extended to the kind of work that others assumed you could or couldn’t choose to want as a career!!

It turns out, that the “unwritten rules” were a really just a paradigm of ableism, other peoples (with and without disability) opinions about what people with disability should and should not do. An imposed set of limits that I now know were unnecessary, unrealistic, and unfounded.
Sometime these limits were subtle, sometime not so much, but the distinct lack of equal access to my community, to opportunities and a lack of awareness about the basic needs of people with a disability challenged me when I naively attempted to resume the lifestyle I had led prior to my accident.

It turns out, that the “unwritten rules” were a really just a paradigm of ableism, other peoples (with and without disability) opinions about what people with disability should and should not do. An imposed set of limits that I now know were unnecessary, unrealistic, and unfounded.

During this process of overcoming obstacles (sometimes in a spectacular, albeit ungraceful manner) I developed a sense of injustice and frustration at my own situation, how unnecessary and unfair it was, and at the injustice imposed on others who were less able than I was to express frustration or challenge the barriers.
There was a time I thought if you complained about lack of access or talked about your disability, it meant you needed attention. I thought it was better to keep quiet than to talk about my disability. As I got older and understood more about these ableist views, I realized that sharing my story and asking for what I needed to live a good life was ok. Discussing disability, and my rights for access to all things equally that others took for granted, did not mean I personally needed attention, it meant my cause needed attention.

With a new year comes a new opportunity; for remembering what it felt like to be socially isolated and restricted and how possible it is that if we choose it, all of us, when we emerge into a new norm,  the spaces and places  we create will allow all of us to share in a brave new world full of opportunity for inclusion in ways we never imagined,
I hope everyone can carry the legacy of having experienced imposed limitations on freedoms and truly begin to understand why we all deserve to be part of community. Everyone .. everywhere ..and in this new world people with disability can be whomever they want, living however they choose.

In the last 40 years, I have often been misjudged, underestimated, criticised, denied, but ultimately, and more importantly been much loved, supported, and encouraged to be who and what I am with warts and all. I am also grateful, grateful that I am lucky to have been born with certain privileges that have allowed me to lead the life I have and had others support me to do so.
It has been a journey, and in all honesty not always an easy one, finding a path of self-love and self-worth in a world that feels designed to not allow you to do that easily.
There so many moments and people in the years since then that have shaped me into who and what I am now. Too many to name individually but all of whom I thank with all my heart for their part in my journey.

I feel content, I feel worthy, and I feel loved. I look forward to celebrating that and more.    Happy anniversary to me, and happy new year to you all. I hope it is everything you wish for,

“Surround yourself with the dreamers and the doers, the believers and thinkers, but most of all, surround yourself with those who see the greatness within you, even when you don’t see it yourself.”  

Edmund Lee.

love Chris

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