Kissabilities Inc.

COVID, Challenges and Confidence (in that order) ~ Author 'Jess'

Everybody has a story. If we’re lucky, our story spans many decades and has lots of twists and turns and ups and downs before it ends. Here is just a small part of mine.

When I first heard about COVID19 I, like many I’m sure, assumed that things wouldn’t get too bad. We live at the bottom of the world and it takes weeks to get overseas mail, let alone some random bug. After all, bird flu wasn’t that serious here, neither was swine flu. We’re safe here, right? Little did my small minded self know, this was the ‘bug’ that would shut down the world and change my life… for the better.

I suppose I should start by telling you that due to a medical condition that I was born with, I am a lifelong mobility aid user. Some people use the term “disability” and the medical community uses the term “neural tube defect”. I, personally, dislike both of these terms. I don’t see myself as disabled, just differently abled (and a little on the short side) and there is absolutely nothing defective about me.

It was March 2020 and Australia (like so many other countries) had decided to close its borders to the rest of the world and our states and territories had even begun to close their borders to each other in an attempt to get a handle on the steadily rising case numbers of COVID19. Our movements were being restricted to essential trips only (grocery shopping, medical appointments etc) and one hour a day of outdoor exercise with social distancing.Restaurants and cafès, cinemas and gyms. Anywhere that crowds could gather were systematically being closed. As somebody who found their freedom much later than most other people, this didn’t sit right with me and I struggled, mentally, to adjust to a different way of living, especially since we had no idea if, or when, the world would return to normal.

I rely on support workers to help me with certain aspects of my life like shopping (did I mention I’m short… some of those shelves are not) but for some time at the beginning of all of this madness we were told that we were not even allowed in the same vehicle as our support workers (except for medical reasons) and that we had to get them to do our shopping and other errands for us. We were, however, allowed to have them inside our homes under certain circumstances, and to have them with us on our daily hour of exercise.

For weeks my life consisted of shopping lists, that precious hour of exercise that I came to rely on so heavily for my sanity and anything and everything that you can do with a tv or iPad (Mario Kart, anyone?). Social media, which was something I had just because everyone else did, had never been so important. It was the only way to keep in touch with family and friends so I was constantly checking Facebook statuses and tweets just to make sure that the people I care for were safe and sane. That was great for those with social media but not so much when desperately missing your only living grandparent, who is in her golden years and thinks a tweet is something a bird does. For this I had to rely on news from family members living much closer to her who, unlike myself, actually like using a mobile phone for its originally intended purpose (talking, duh).

I started off getting out only once or twice a week with one of my favourite support workers for some fresh air but soon realised that I coped so much better on the other days if I got out of the house more often. It was also at this time that I rediscovered my love of music so I’d grab my iPod (yes, I still own one) and my headphones and I would go for a wander around my neighbourhood. It was on these trips that I discovered places that I didn’t even know were anywhere near my house or places that I knew were there but had never really paid much attention to. Enter my other love… photography.

There was one particular outing that will forever stick in my mind. I took my normal route to one of my favourite local parks… it was deserted (unless you count the ibises, or “bin chickens”). Nothing unusual there because, by this time, we were knee deep in the initial stages of the pandemic. I took my usual mountain of photographs and headed home. The only difference to every other time I had done this trip is that I decided, on a whim, to take an alternate path home. This particular path took me straight through a slightly more secluded park that, despite being mostly hidden from the street, was usually full of people, including children on the play equipment. It was then and there that the true impact of what we were living through finally hit me. Not only was the park completely empty but the play equipment had signs on it saying,

“AREA CLOSED. NO ACCESS. PENALTIES MAY APPLY”.

Despite it being a beautiful sunny day, the park felt eerie, haunting even, and although I had been there on numerous occasions, I had never stopped to take photographs… until then. For whatever reason, I felt compelled to document what I was seeing in some way so I pulled out my camera and started snapping away. There’s one particular photograph that captured the memory perfectly. Bright and sunny weather, colourful play equipment and that sign. Although we live in a different time, the sight of that park got me thinking about past worldwide outbreaks. Were there similar scenes during the polio outbreak? How did people that lived through previous pandemics cope? And then I started thinking about our current situation. If it was difficult for me as an adult to cope with restrictions, how were children dealing with it? Especially those too young to understand why mum or dad can’t take them to the park today and, maybe more importantly, how were the parents and carers of those same little ones coping with not being able to explain why to their children?

It was also at this point that my thoughts turned from negative curiosity to just being grateful for what I have (including the ability to at least partially comprehend what we were all living through, not to mention technology that allowed me to stay in touch with my loved ones and, so far, my health).

It’s now been almost three years since that initial lockdown and the world is adapting to a new normal (it’s fairly unlikely that things will ever go back to the way they were before, in my opinion) and I’ve never felt freer. I’m catching buses for the first time in my adult life (and alone for the first time ever) and I’ve discovered a love of doing things alone, which absolutely terrified me before. I couldn’t imagine anything more boring than going out to lunch or somewhere like the cinema alone before the pandemic and now I embrace the opportunity to do both and so much more.

I started volunteering once a week in the September before COVID19 hit and instantly fell in love with the place and the people there. It was just a few hours once a week and my support worker would initially stay with me and then, once I felt more comfortable being left there, she would drop me off and pick me up. I was still quite shy though and wouldn’t engage with other people much unless spoken to first. Since we’ve been allowed to resume our lives I’ve moved to one and a half days a week and catching public transport (a train and a bus each way) there and back (well, I get a lift home on my full day now, which allows me to do all eight hours and get home safely) and I’ve met, and made friends with, some of the most incredible people. They have not only shown me that it’s okay to be myself, they encourage it. They value my opinions and embrace my quirks and are some of the most important people in my life.

I’ve been taught life lessons and actual marketable skills by staff and volunteers alike as well as having a much better understanding (and therefore acceptance) of myself. I was even taught just this past week that it’s okay to question things and not just accept the first answer as definitive.

What was it about the time during the beginning of the pandemic that gave me this newfound confidence? Was it the time alone that led to self reflection? Was it a sense of feeling isolated, not just from the outside world but from the people that know me the best? Was it something else entirely? The truth is that I actually don’t have an answer.

What I do know is that my growing confidence also means that instead of being terrified to answer the phone at my volunteer job, and making a game out of it to mask my serious anxiety over doing so, I’m now happy to answer the phone and even make calls (which is a big part of my time there) and chat to the person on the other end. I can, and do, engage with anyone and everyone that walks through our door and will even be the first one to strike up a conversation.

Anxiety can sometimes be a term that’s thrown around and used to describe everyday nerves. As someone that has been formally diagnosed with an anxiety disorder, I can tell you that it’s so much more than that. Remember when I said I found my freedom quite a bit later than most people? That was, in part, because I was terrified of the world (and my place in it). I didn’t really know where I fit in. I have a wonderful family but because of my being differently abled (and probably also because I’m the family baby and the only girl), there were certain things that kids my age were doing that I was not allowed to. It was a beautiful attempt to keep me safe but definitely did not prepare me for navigating the world as an adult.

Having said that, I actually believe that my anxiety would have been a “thing” anyway. Kids can be cruel, teenagers can be worse. From drawing pins in my tyres to the “cool kids” taunting me almost daily with shouts of “Get up and walk, you lazy b**** (rhymes with itch). These, and other things, helped shape the person that I was. The person that was terrified to catch the train or bus, the person that never felt more alone than when she was in a crowded room but was sitting in the corner on the verge of tears because she was too scared to talk to anyone. The person pretending to be someone she wasn’t, in the hopes that someone would like her. The problem with that is that even if I ended up making friends with someone, they didn’t actually like me, they liked the person I was pretending to be.

I used to be ashamed of the person I was. I’d be deliberately vague when asked about myself or even just change the subject. That has changed in recent years. I’ve learned that where I’ve come from and who I was aren’t things to be ashamed of but things to embrace because they show how far I’ve come. The person I was has shaped the person I am and, hopefully, the person I’ll become as I continue to grow and change. The world can be a scary place but, given the right circumstances, can also be incredible. It’s full of beauty, wonder and opportunity. We just need to have the confidence to embrace it and, in the hard times, learn from it.

I may have slightly misled you at the beginning of my story. Disability was very much a word in my vocabulary prior to the pandemic. I referred to myself as a person with a disability and, while it never defined me and has certainly never been all that I am, it was a convenient excuse not to try new things when my anxiety kept telling me that I couldn’t do them. Now I find myself seeking out new challenges and actually caught myself saying to one of the staff at my volunteer job “I want more responsibly” before I even realised I had said it. I thought about it afterwards and realised that I had done so because I believe it.

Don’t get me wrong, We would all be better off if COVID19 had never existed but I can’t help but be grateful for everything the experience has taught me. It’s difficult to articulate but I’ve done my best and I just hope these words are enough to give you a little insight into my world.

Writer’s Note: This story started out as my experience throughout the pandemic but, after some incredible conversations with some people that I truly respect, it has morphed into something else. I was initially hesitant to write something so personal for the world to see but I honestly hope that after reading my story you, the reader, may feel inspired to have similar conversations and to also share your story… even just with yourself on paper (or screen).

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The Gifts of ADHD.

Edit 6 June 2018:

Lots of people have asked which book this is from.
I believe it is in “The ADD & ADHD Answer Book: Professional Answers to 275 of the Top Questions Parents Ask” by Susan Ashley Ph.D.
Check it out here:
https://www.amazon.com/ADD-ADHD-Answer-Book-Professional/dp/140220549X

Andrew

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