As the year draws to a close, my Facebook feed suddenly swells with photos of terrified children forced to sit on a strange man’s knee, and posts celebrating people’s achievements for the year – “this year I ran 27 marathons, I read 27,000 novels, I was so busy at work that my head fell off, I travelled around the world 8.75 times, and my daughter won her [insert unexplained acronym] competition”.
As a disabled woman, I usually struggle to participate in this wonderfully boastful ritual because I am unable to accomplish many “achievements” as defined by our society. But this year I’ve said fuck it, I’m going to celebrate all of the ways in which I’ve turned my back on the goals, and kicked the football into the bonnet of the car parked on the boundary and set off it’s alarm. I’m going to celebrate the times that I’ve cast aside my fishing rod, jumped into the river and come out with a handful of seaweed to eat for dinner. Here, I proudly present my top ten anti-achievements of the year.
1. I allowed myself to be defined by my disability
In a world that celebrates people who “overcome” their disabilities and tells us to not let our disabilities define us, disability pride is an act of defiance. Disability pride is about fighting for the 20% of the population who are disabled having equal rights to participate fully in our society as do the majority. Disability pride is about accepting that 80% of all humans will experience an impairment in their functioning during their lifetime and disability is therefore natural. Disability pride is about celebrating that disabled people are awesome and valuable just as they are.
In 2018, I contributed to the disability pride movement by participating in the Disability Pride Mural in Melbourne, launching Chronically Crappy, and talking about my experiences as a disabled person on advisory committees.
2. I hung out with trouble-makers
One of the upsides of coming out as disabled has been is getting to meet rebels who are smashing the world’s view of disability. This year I was honoured to spend time learning from disability activists including:
- Larissa MacFarlane (artist, speaker),
- Carly Findlay (writer, speaker, appearance activist, author of Say Hello),
- Kath Duncan (artist, producer, writer, researcher, member of Quippings),
- Jax Jacki Brown (writer, speaker, performer, LGBTIQ activist),
- Liz Wright (radio show host, Metro Access Worker, organiser of BandMates),
- Chris Varney (founder of the I Can Network for autistics),
- Nicole Lee (ran as an independent in this year’s Victorian election on a platform of reducing violence against women), and
- The whole cast of Not Normal.
I’m such a fangirl of all of these rockstars that I feel nervous just mentioning their names – squeal!
3. I played more video games
In addition to not looking like I’m disabled, apparently I also don’t look like a gamer. I’ve been told that part of the problem is that I’m not a dude. I’m not sure what the other part is – I don’t have elf ears? So here is another coming out – I’m a nerd and I love video games; the dragonier the better.
Unfortunately, at my sickest, I struggle to concentrate enough to read a book or play video games; I’m reduced to Netflix or phoneflix (that is mindless scrolling on the phone). At the start of this year, we changed my medication, and my health declined as did my gaming.
I’m pleased to announce that in a sign that my medication is better suiting my body now, I have been gaming most evenings for the past few months. I am currently playing as an undead lizard called Lizarius who fights in close combat with spells that morph her into Medusa and her enemies into chickens (yes, she is my creation).
4. I broke my diet
For the past 4 years, I’d been on a diet of no dairy and low fructans (wheat, garlic, onions, dates, artichokes, beans, legumes) in order to manage my irritable bowel syndrome. This restrictive diet in combination with my longstanding fussy eating, had near reduced my eating options to dust and water.
I can’t start to explain how excited I was this year to be able to reintroduce yoghurt, limited cheese and chicken into my dust bowl (see what I did there?) without getting either sick or disgusted. At many restaurants it doubles my menu options – from one to two things! What is this choice thing? I love it!
5. I was unreliable at work
When I first returned to work after becoming chronically crappy, I fought hard to maintain my standards as a professional employee. I thought it impertitive that I worked my hardest at all times and I was highly reliable – barely missing a day of work and always being on time. I quickly learnt that being a model employee and maintaining my health were incompatible. I went to work when I felt sick, I pretended to be well, and I kept saying “yes” to more work desperately wanting to prove my worth. Eventually my body said “no” and my employer said “go”.
New work in 2018. This time I told my supervisor (and anyone who’d listen) that I was disabled. I also told them that I could manage working 1/2 a day per week, I would need to move my work hours around at short notice due to ill health and medical appointments, I would not always function at 100%, I’d need breaks to meditate, and I couldn’t often socialise with colleagues.
I became unreliable at work and it’s been highly successful. I’ve been able to maintain working for the past 8 months, I just finished writing a 6 week workshop on boosting the self-esteem of women who have experienced homelessness, and I’ve been invited to work on another project for them next year.
6. I exercised irregularly
From somewhere I had developed the notion that exercise must be performed at regular fixed intervals or it doesn’t count as real exercise. Before becoming chronically crappy, I would attend the same classes every week religiously.
However in 2018, both my health and work commitments fluctuated wildly. Committee meetings occurred at odd intervals, Skype appointments with my interstate doctor were scheduled at short notice, and it took me most of the year to regain an understanding of how my body worked on the different medication I was taking. My exercise was constantly cancelled.
I decided to do something radical. I threw my fixed exercise schedule into the bin. I started exercising whenever I felt like it and I could fit it in. As a result, I went to a variety of different yoga and tai chi classes. I snatched pockets of free, healthy time to walk, swim, snorkel or dance. Each week and each week’s exercise program was unique. I gained motivation and love of exercising. I maximised time for exercise.
7. I didn’t finish
I know that I promised a top ten list and ten would have been a neat, clean number. However I ran out of energy and interesting ideas so I’m stopping at 7, well kind of 6 really. This is actually how I navigate my whole life now – health drives with perfection and completion riding in the boot.