Thursday, 29 March 2018

A day in the life.

[Image: a pale brown round wooden table can be seen in the top left corner. A glass of champaign a book, The Dressmaker, sits on top of the table. Down the bottom and right of the photo a pair of bright red flat shoes, jade stockings and grey floral dress can be seen. The feet rest on a wheelchair footplate a small front wheel from the chair can also be seen.]



Demanding chickens circle my feet as I sit outside with my morning coffee. Two days ago Mr Grumpy bought cracked corn for treats and already they are hooked. Waddling feathered bodies burst from under trees and amongst the pot plants making a beeline as soon as they see my silhouette closing in on the back door. Slow awkward bending fills my hand with hard chips of sunshine yellow corn. I stumbled out today. My gait wide and shuffling. Coffee in one hand, the other held out awkwardly attempting to provide balance to my unsteady limbs whilst maintaining its grasp on the corn fragments. Flop on the chair and lose half my coffee. Chickens jostle for prime position and I lower my hand. The feeding frenzy begins and I wonder if I will have any skin or fingers left by the time the ravenous great whites finally retreat.

* * *

Negotiating the front step is always tricky. Lift high enough or risk catching. Thin wood on brick not wide enough for any thoughts of stability. Rest my bum on the left side of the door frame, my hand on the right, slide step my way down. Land with a jolt. Twisting thin concrete paths and overgrown grass await as I position my hand on the curve of my clear lucite walking stick. I pause to access our poorly placed letterbox. I negotiate the garden, the long green whiplike native that whacks my wrist, the newly piled bark chips and the ever-present spider webs. A short plea to the universe that my exploring hand won't find a furry or sleek eight-legged inhabitant. The haphazard web suggests one of the bulbous black spiders that inhabit our windowsills, but I push that to the back of my mind and think happy spider-free thoughts. Puppies and kittens. Puppies and kittens. My brief Indiana Jones moment passes as my hand emerges from our Bunnings budget black letterbox, with thankfully spider free junk mail.

* * * 


My walking stick is hooked on the chair by the front door while I balance against the wall. The junk mail tossed onto the seat. My left-hand trails along the top of the long leather lounge as I make my way to the kitchen. As it comes to the end of its purchase my right moves to the white and floral cupboard that I restored years ago. I still smile as I remember the effort that went into its new form, and a remembered image of my then teenage son and his friend who I coerced into picking it up on the side of the road to carry it up and down the hills to our old house. My hands alternate left and right, grab, rest, pause, continue. Automatic after all this time. My bum finds the strategically placed chairs throughout the house, or, on a good day, I move onwards with the heady freedom of functioning that is steadying hands on walls, tables and benchtops.

* * *

I push too far with my exercises. My attempts at pacing still undermined by the stubbornness that flows through my maternal line. Flailing of limbs on my yoga mat or grunts and swearing on the frequently cursed Pilates Reformer out the back, and I land on my bum. Slow crawl and bruised limbs get me to my bedroom. I sit down part way through the echoing two-metre distance from bed to ensuite toilet. I see it recede into the distance and slump resigned that I'll be down on the tiles for a while yet. Legs go up the wall and blood moves sluggishly back to my brain. Crawl and stumble back and forth. My legs replaced by jelly that refuses to bear my weight. At least I can get up today. The days I pour myself over the edge of the bed to crawl to the toilet not as frequent of late. *runs around touching wood*

* * *

I decide to head out of my four walls. Phone phobia swallowed as I call both event organisers and taxi company. I check Lucille's power and begin the long process to get myself together. Shower, hair, make up and dressing punctuated with lying on my bed waiting for my body to recover from each step. I walk out of my house walking stick in hand, bags flapping, and stumble to the shed as the taxi pulls up. I never go anywhere without provisions. And alone it means carrying everything and anything I might need while out. Water, meds, pacemaker card, vomit bag, the list goes on, my body's needs unpredictable. Flop into my chair and hand over control to the friendly taxi driver as he hooks my chair and me into the back of the cab. Out I go exhausted, coifed, and well medicated.

* * *

A woman comes up looking at my legs. I tense. Here we go. But she just wants to talk about my bright red flats. She loves them. Where did I get them from? Another asks about my dress. Another offers me a second glass of bubbles (she may be my favourite). I sip quietly thinking of the other times I've been approached while in my chair. The woman at the International Day of People with a Disability event last year comes to mind. The moment stored in the back of my mind still colouring my interactions.

* * *


Sitting quietly near a photo of myself and Mr Grumpy, a blurb about my disability experience underneath. It's crowded and noisy. The coffee, International Roast in big silver urns. Government issue white squat coffee cups with tiny awkward saucers cover the tables and crash to the floor as someone knocks over the precarious display. What's wrong with you? I saw your legs move? Using a wheelchair and limbs that move, incongruous to her mind. Demands of explanation. She looms overhead waiting for me to justify my use of a wheelchair. A shitty IDPwD (well, International Day of People without a Disability Patting Themselves on the Back Day) event followed by invasive questioning of my disability and my use of a wheelchair. All the memes and disbelieving social commentary wrapped up in a stranger who felt entitled to ask why I was using a wheelchair. Ambulant wheelchair users are still considered fakers. There is still the underlying judgement, sometimes overt, sometimes whispered. But it's there underlying interactions, seeping its way into my life in ways I am often unaware of until later down the track. Government and media narratives about fakers and bludgers serving to give licence to disability vigilantes who strap on a cape and march out into the world ready to spot a faker at 100 paces. It gives licence to entitled people who want and expect their inquisitiveness to be answered.

* * *

I commiserate with friends. Many of whom use multiple mobility aides depending on their need at the time and have faced similar comments. I want to say I can wipe it away, and mostly I do, but sitting with my glass of bubbles, newly signed book and friendly people I realised that I am still affected by those negative interactions. My faith in others is tarnished and I tend to expect the worst. It's often not until I see myself through the eyes of others that my confidence is shaken and at some level, I am permanently en garde. Because someone is always watching, waiting for you to slip up so they can call you out and feel awesome about themselves. Because our perceptions of disability and mobility are still so limited. If it's not visible it's not real. If it fluctuates it's not real. If you're younger it's not real. If you use a wheelchair you must be paralysed. Because these microaggressions happen every day. Day after day. And they add up and creep into your comfort zone when you're not looking. I am glad my outing was fun and filled with lovely strangers. But I begrudge that as comfortable as I am in myself, those negative interactions continue to intrude when I least expect it, especially on what should be simply enjoyable events.

* * * 

Back at home, I stumbled into the house as Mr Grumpy maneuvers Lucille off the carrier on the back of the car. I wander out to the backyard as Freyja presses her warm head under my hand hopping in step as we both move over the grass. I flop onto the lawn to talk to our chicks. Their once little yellow bodies now those of straggly yellow and brown teenagers. All attitude and noise. Our big girls are away and the little ones chirp excitedly as I open the door to their smaller day coup. My shoulder rests against the door frame and I fill my hands with their tiny warm bodies. Freyja's jealous ears pick up and by the time I move to cuddle the fourth chick she is up running at the wire to make them squark and flutter. Proudly prancing away, her goal achieved. I close up the door and she stands next to me so I can use her as a prop while I pull myself up and we both make our way to the back door. A mutual balancing act. Between her three legs and my unstable gait, I sometimes wonder how we manage so successfully.

* * *

Wall, walking stick, wheelchair, and Great Dane my mobility needs continue to vary. My days change and my body is fickle. And I find myself processing, once more, the effect that negative interactions have on me, my sense of self and how I interact with the world. But tonight Mr Grumpy pours me a glass of wine and turns on the TV. We laugh and joke and watch the fluff that is the new American Idol. I'm like a big kid telling him about my day. He listens patiently as I speak a million miles a minute not pausing for him to contribute to the conversation. I get out so rarely that my excitement is palpable. Dinner is vegemite toast cut into little kiddy pieces because he's hilarious, and the raucous chirps from the chicks echo through the house. Freyja alternates between snoring and barking in her sleep, her remaining legs running. My tweaked back is sore but bearable. And my body moulds into the couch and the tightness between my shoulder blades begins to relax. The day is done and life is good.



I love this song by Sara Watkins. It always feels restful and joyous.

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