Sunday, 29 December 2019

Summer Retreat


[Image: A dry rocky riverbed with a smattering of green bushes. A vibrant blue sky can be seen in the distance between rising rock faces on either side. A man walks in the distance away from camera wearing a maroon top and jeans.]



The official retreat has begun. The heat sits just outside the window. Sneaking around gaps of poor fitting blinds to enter the house. The drone of the air conditioner the music of Summer. A perilous lifesaver in a time where blackouts are predicted as an ongoing part of the Summer.

It’s hot and the country burns. Heat records broken day after day. Wildlife and land decimated. Lives and homes lost. And Summer just begun.

We’ve been lucky here. Our little pocket of the country has escaped the worst of heat and flame. So far. Always the reminder that it’s only ever so far. As I write, local emergency services are encouraging mass evacuations for tomorrow. Preparations for the possibility of the worst. Just to the East of us.

Just.

So far.

Soon.

*****

Once we lived in the hills around Melbourne. The cool of the tree ferns and mountain ash a boon in Summer. The difference in temperature from CBD to hills a welcome balm in the oppressive Summer heat. Particularly for a body that no longer functioned like other bodies. But not now. I miss our old house, but not the ever-present fire threat. The preparation, plan and pack. Beauty and danger in equal measure. A road that the CFA said they couldn’t protect. Watching Elvis turning over our house, carrying hope and water in equal measure. Evacuation down congested panicked roads as ash and sparks started to fall. Trying to convince my stubborn elderly neighbour to evacuate with us. The blood-red skies of Black Saturday and the weeks that followed. 

I still miss the cooler times. The thick mountain mists. The mimicry of the lyrebirds, the slow amble of the echidnas in the garden. But not the warmth. Not the rise in worry that matched the yearly rise in temperatures. Not the knowledge that my disabled body would be unable to escape without aid.

The heat rises and the danger with it.

Summer is now all harsh edges and scouring surfaces. And we stretch thin under its gaze.

******

Here in flat country suburbia, concrete and bitumen reflect and reinforce the heat. Reclaimed cow paddocks, denuded over years of bucolic servitude have left little in the way of natural canopy. Generic, cloned replantings do little to alleviate heat or the claustrophobia it brings. Artificial spaces forcefully imposed on the environment they don't understand yet seek to control. Crisp lawns stretch down street fronts. Buffalo grass taken by opportunistic scruffy parched weeds usually resilient, but even they bow and wilt under a relentless sun. The streets are empty of life. Human and animal. The blowflies seek the cooler shadows where they fall under ineffectual house eaves. Sun, concrete and bitumen work only to extract the last breath or final drop of moisture. Extinguishing life by bare presence rather than any show of effort.

Drought’s grip was strong long before the heat arrived. Now their combination has largely stripped green from the colour wheel. Small patches of artificial irrigation represent green anomalies in the parched brown and grey landscape. But even the remaining colours are faded remnants of past glory. Miss Havisham’s bitter touch rests everywhere, and the lacework that was one wetlands, bush and lush paddocks, but a husk.

*****

My body can feel the warmth outside. The air that flows down to my supine body softens the ragged edges branded into flesh by external heat, but never quite meets the mark. I exist simultaneously outside on the scorched lawn as on the soft sheets of my bed. I hurt and I shake. My chest feels tight. Pre-existing health issues ramp up with the knowledge of what exists outside cheap brick and glass. I actively try to ignore what the days and months ahead will hold. What the years to come will hold for all the bodies like mine. But it creeps in because it must. If I can’t cope now what will happen as temperatures stretch ever higher? Ever longer?


Heat is an ever-present worry that collects other worries as the days stretch out.

Worry that the power could go out. Worry that my body will fall into cascade failure should the airconditioning cease. The worry that all my planning will amount to nothing. That in the end, the land on which I live will outwit me. Always the worry on worry on worry.

After years of proactive retreat on the hottest of days, I tested the waters. An important family event unavoidable. 40+C inside a stadium, radiant heat outside disintegrating flesh from every angle. Excruciating chest pain radiating up neck and jaw, moving down my arm. Pacemaker kicking in. Vision fading. A rising panic, part physiological, part the well-worn knowledge of what was happening from times past. Ice vest, ice water, cotton clothing, fans. All of it pointless. A reminder of heats bite on a body that cannot cope with temperature extremes. A reminder that it is only the dull droning overhead that keeps me upright. Well, supine, but breathing.

Still recovering. Always caught in still recovering. And always the next hot day, after the next and the next. Heat creates an ever-decreasing level of recovery for a body that was already in the red from added illness on illness that I had yet to recover from in cooler times.

Still, I dip the toe and pretend to function. For myself as much as others. Dip my toe and reap what I sow. Dip my toe or have no life. But how do I ever truly dip the toe as the heat grips us so tight?

Self-care now becomes ever more intertwined with retreat. 

Isolation the norm.

*****

The heat beats on relentlessly outside. The light is sharp and thin. We plan again for the worsts. The area holds its breath. Mandatory evacuations begin. Retreat before tomorrows predicted onslaught. The East already burns. It's burned far longer than media has deigned to report. Out of control in inhospitable, stunning mountain landscapes. The air quality is poor here, far from the flames. Hazard warnings reign where the gums explode and the ash rain falls. Another crisis yet to reveal itself as fetid air fills lungs of locals and firies for months on end.

Retreat.
Relentless.
Relentless retreat.

*****


Where once we would retreat to the hills for cooler climes or to the coast for cool saltwater.
Now we retreat from nature
For self-preservation.
Anathema to the heart. And yet….

Retreat inside.
To artificial cooling for artificial life.
Retreat and hope the power stays on.
Retreat and prepare.

Prepare.
Prepare.
Prepare.

The long hot Summers that stretch ever longer.
The long hot Summers that wreak havoc on dysfunctional flesh.
The long hot Summers that shrink life.
The long hot Summers that exhaust body and mind.

*****

The days stretch.

And I enter my confinement.
Dark and claustrophobic spaces.
Where I dream in hot, flustered and irritated walls.
For a time where memories of flight and self-preservation will fade
and retreat will once more mean
recovery,
rehabilitation
and reverie.

Michelle

Wednesday, 6 November 2019

And now she is gone.




[Image: A merle Great Dane, Freyja, is lying on the floor staring directly at the camera. She is resting her paw on Michelle's pink dressing gown covered lap. Behind her, a white mid-century rocker, window and other snippets of loungeroom furniture can be seen.]



The house feels empty and claustrophobic in equal measure. The walls weigh heavy on my heart. Each morning there is a moment, just before I open my bedroom door where I have forgotten. Then I am faced with a large empty couch and it hits me she’s gone.

It’s been almost two weeks now since I had to make the decision to say goodbye to Freyja and the wound is still raw. Everywhere I move in the house she is there, or more crushingly, she is not. The house is dotted with holes. Large gaping chasms that trap me at every turn. I can’t escape the reminder that I’ll no longer see her.

I can no more look down from the edge of my bed where she took her last breath or move out to my backyard where she would sit at my feet in the sun, or rest against my hip as I watered my plants. Every corner contains a memory.

Her hair is everywhere. I can’t bring myself to clean it. Her nose print remains on the front window and the multitude of drool droplets that once exhausted my cleaning efforts and patience are now a reminder that she was here. My section of the couch still holds the imprints of her paws. Small scratches in the leather. Her smell on my cushions. I don’t want to clean it. Or touch. Or see. I can’t sit with any sense of comfort or ease.

The loungeroom is empty. I hate being in there. Her couch sits to my left and I still turn my head expecting to see her. I start to chat to her. To the fridge to get her dinner. I stand at the coffee machine and wait for her warm head to worm its way into my hand. To hear her chat when I am too slow to realise she wanted a pat, a feed, to go to the loo or just an ear rub.

The last year she had slowed. In truth we both had. She slept and so did I. Long exhausted hours. But even in sleep she was there. A physical presence. Small breaths. The warmth of her body. Her smell that wrinkled my nose. The comfort of another living being in the house. The last six months have just been the two of us. With Mr Grumpy overseas she has been my partner and my constant. She has been a reminder of life. Connection.

And now she is gone.

No matter how much I know it was the right decision. No matter how much I know that there was no choice. It hurts. Giving voice to the knowledge. Words more sob than syllables. The vet and the vet nurse kind and comforting. But she was done. She woke in the night scared and crying for entrance to my bedroom. By morning she wouldn’t eat. By lunchtime, she couldn’t stand. After so long it all happened so quickly. She felt indestructible after cancer, amputation, infection. Slowing but continuing. We plodded along together. Well-matched throughout.

She left the world in my arms next to my bed. Her favourite place for the past 10 ½ years. Just the two of us.

The unreal nature of the moment when I was told she was gone but she was still there solid and warm in my arms. Her fur felt no different under my shaking fingers than it had a minute beforehand. She was still there even after she had departed. She was still there. The vet and nurse left quietly while I sobbed and told her how much I loved her. 

I couldn’t watch while they took her away.

As the front door closed and silence descended.

She came into my life when I was already unwell. She, like Thor before her, has been by my side through it all. Attuned to my body. Coming to alert when my heart rate plummeted. Pounding my chest and barking and licking my face to wake me after a faint. Snuffling my neck as I threw up in the loo. Watching while I showered. Relaxing only when I was out and safe on the couch. Providing love and comfort when it was all too hard. We’ve hardly been apart in the last decade and I have spent more time with her than anyone human or animal in that same time.

And now she is gone.

A house doesn’t feel like a home without a dog. It is incomplete. A missing ‘something’ creating an itch that leaves me restless and flat.

I am wrung out and exhausted.

There is a large Great Dane shaped hole in my heart. And all my tears fail to fill it.

I know it’ll get easier with time. But the house feels less of a home without her presence.

I know it’ll get easier. But for now, the pain sits heavy.


Michelle




Tuesday, 13 August 2019

10th Blog Birthday.


[I'm currently too tired to take a celebratory photo so this old one from my #UpAndDressed project over on Instagram will have to do. 

Image: Michelle sits on an object covered by a purple tones throw. She is in between sections of aquaponics and surrounded by greenery and a red chook house in the background. She is holding a glass of wine and wearing a pale pink crocheted dress, patterned brown stockings and brown t-bars.] 


My parents recently sent me a package of photos and newspaper cut-outs, memories of days past. In amongst it all was a newsletter from my old workplace. Myself and a colleague were photographed as part of a feature on our particular hospital in the network. About an hour after that photo was taken I was in ED for the first time. I scan the image unable to find signs of what was about to begin. I look a bit pasty, but other than what appears to be my dedication to a 70s beige-on-brown aesthetic, there is nothing of note. Thirteen years ago this month everything changed and it appears that it happened in an uneventful workaday period of life. Beige. Illness popped up in a world of beige and burst it asunder.

I couldn’t tell you the precise date. I know roughly but it’s been lost over time. The date doesn’t matter. I used to think it did but it doesn’t.  It doesn’t add to my story and it holds no value. I remember the feeling though. I remember that. And it is this aspect both on that day and over the intervening years that have moulded me and my life. It is that which has peppered this blog for the past 10 years.

There’s something quite apt that my body has delayed my recognition and celebration of 10 years of blogging. In truth, it’s interrupted much of life, not just celebrations of milestones. Life is catch up at present but that is much of life with long term chronic illness. 10 years came and went last month and only now can I even begin to process what that means. And even that interpretation is coloured by the struggle of the past few months.

I’ve looked back at my early writing and find myself in a familiar and also foreign world. So much of life with a chronic illness is rinse and repeat. The diagnostic processes, frustrations with the medical system, the hope-try-disappointment cycle of finding a collection of meds and other treatments all still the norm. The tangle with what I now know is internalised ableism. The up and down. It’s all still here. It’s all still reflected in the one support group of which I am still part. One support group. That is a change. Early on that desperation for answers, for connection, for someone else to say that what I was experiencing was real, all of it was so incredibly pressing. I collected support groups like I once collected shoes. I still collect the shoes, but my need for multiple groups is long past. I’ve transitioned to a life where illness is still ever-present and requires a large amount of management, but such immersion in that world no longer serves me. If I find a reserve of energy, I throw it into things that bring me joy. I have given my hearts blood to advocacy and awareness for years on end. That became a burden that was exhausting me. Now I need the balance of other things. And it is that which I have sought for the last few years. It is that which is reflected in the drop off in blog posts.

Illness is isolating. Even when you find others with the same disorder, or have a good support system, the actual living part is still yours and yours alone. Working out how to navigate that space is tough. It’s still tough. Every time I’ve thought I had it, it slipped through my fingers. Sifting through the overwhelming amount of “how to be ill” information out there to find the parts that work for you takes time. It’s the putting together of a recipe, one that evolves over the years. It’s the realisation that there were skills I already possessed that just needed a tweak to be useful in this new world I inhabited. It’s the understanding that the perfect sick person doesn’t exist. That the permanently positive is corrosive. And we don’t have to drink the Kool-Aid.

Illness hasn’t gone away. I am still ill. More ill in some respects, better in others. I am writing from bed today as it’s one of those days in the long list of those days. Those days have dominated the last 13 years. There have been days where the incapacity is lessened but it’s never fully gone. Chronic means it never goes away. It is shit or less shit. During those less shit days I actively seek out life. I push harder than a rational mind would agree with, but it has meant that there have been moments I never would have thought possible in the early days. It hurts, even in those moments of glory, but the hurt is easier when it occurs in the context of joy.

I am more ruthless now in how I spend my energy. When I’m in a flare that ruthlessness takes on a sharpness of focus that erases the rest of the world. But even in the day to day minutia, I choose the necessary, then the heart’s food, and after that, if there’s anything left, I may or may not reach out to the world. And every day it takes on a different form. Dependent on numerous factors some of which I am not even cognisant of as they now fall into the realm of instinct. It’s taken time to prioritise my needs. Not that I don’t still feel guilt and live with self-recriminations. But there are more and more times where energy reserves are enough to post a chicken photo on Instagram, because chicken love should be shared, but the ability to check back, read or respond to comments is beyond me. And that’s okay. I can reach out and dip my toe into the word before retreating time and again if that is what I need. If that’s all I can manage. If that is it, that’s okay. For me. For you. For all of us.

I wrote years back about how life becomes okayish after a while.

“Those first days and months are hard and scary and lonely. But you'll make it through.   You think you won’t.  You'll want to throw in the towel and scream "No more!", but you'll make it out the other side.  And you'll do it again and again.  I can't predict how your symptoms will pan out over time.  We are all very individual.  Some will get better, some will have symptoms that wax and wane, some will have a chronic but stable process and some, like myself, will progress.  Your body may still be broken, but your ability to deal with it will get better.  You will find your stride.  You will find the things and people in your life that matter and make you happy.  You'll be able to breathe, even when it's bad.  It won’t be easy but you'll find that your ability to cope and your acceptance will grow.  Your spirit will heal and you'll find direction you never imagined.  You are filled with possibilities and, if you give yourself permission, you'll find them.  Being ill can give you the freedom to explore yourself in ways you never thought possible.  Life with Dysautonomia or any chronic illness, is a life changed, but sometimes that change is a wonderful thing…. Just know, it gets better.  Not in the Disneyesque sense of shooting stars and rainbow farting unicorns.  But in the real-world sense where you're battered and bruised but you're stronger than you thought and more at ease with your life.  It takes time, and there will be tears and disappointment and setbacks.  But one day you'll turn around and realise that somehow you made it through, and no matter what your body is or isn't doing, you're okay.


I read back over that piece and realise even as I was more centred in my new life, I still had further to go, I still do. There are parts I would change. My reliance on double spaces at the end of a sentence that reflect my age, and the idea that my body was broken.

Broken doesn’t work for me these days. I’m a person, not a car. Parts don’t work as advertised but broken has a whole other connotation. Broken feels unassailable. It suggests a correct way of being and I was not that. With our bodies and sense of self so intertwined it suggests that I am broken. Me the person. And that doesn’t serve me.

Broken, when that is to be the rest of my life, is a place I don’t want to inhabit. It comes down to survival. Survival in my heart, in who I am, in the kind of life I want. Broken doesn’t serve me. Broken is a burden. A burden I can’t be bothered carrying these days, not if I have any love for myself. Not thinking of myself in terms of a broken body isn’t a blissful delusion. I am lying here with a puke bag and wincing in the pain burning in my legs which well and truly belies the delusion. But at some point, I integrated it as part of who I am. A part of the whole, but certainly not the whole. I say that with the full admission that I don’t always get it right. That I don’t always feel it. But that I recognise my wholeness right here right now. And that wholeness is worthy of love and celebration.

There is no perfection in chronic illness. We all cock-up. Even those of us who have found a way to navigate this life still take wrong turns. I get frustrated, sad, scared, all of it. I cry and get angry. The weight of it all feels overwhelming at times. The level of exhaustion, physical and mental, that can develop is like nothing I ever knew existed before I became ill. But the things I now manage reasonably regularly seemed insurmountable in those early days. My line in the sand keeps on moving as I realise that even amongst it all I am far more capable than I could have ever imagined.

And through it all there is life. There is laughter and joy. There are friendships and love.

And an integration of it all where I feel more myself than I ever had in 46 years of life.




I’m not sure where this piece fits in the many narratives about illness, but it is my reality, 13 years on from that first ED trip. Ten years on from putting my words onto the blog and out for public consumption. Ten years of growth, missteps, fears and laughter out there for others to read and take from it what works from them. I look back at some of it and think I should go back and rephrase or rework some of it. There are times where my internalised ableism is a punch to the gut in light of where I sit today in recognition of those feelings. But I can’t re-write the past. I wouldn’t be where I am today if I hadn’t worked through all that shit and I know there are long term readers who have been there for the long haul working through it all with me. In the end those words allow me to trace the path to the me who is here on this day.

The support readers have given me over the past 10 years has helped to get me through some of the toughest times in my life and helped me celebrate the wins big and small. Many have become friends. Geographic borders and fickle bodies overcome by the digital world. I will be forever grateful for that. The tiny corner of the digital sphere that this blog started in is now a busy metropolis, and the explosion in voices fills my heart.

Thank you to all who’ve taken time out of your lives to read and be part of this little community.

Michelle

I still feel a need to celebrate 10 years of blogging. I had wanted to do an over the top sparkly fashion shoot involving way too much fabric, glitter, red shoes and maybe chickens (Freyja is just too old and grumpy to participate these days) but I don’t have the necessary organisational energy at present which is a rather disappointing reality. But if anyone has any fabulous low energy ideas I’m open to suggestions.



There's a line in the song below "collect your scars and wear them well" that for me sums up life with chronic illness. And after over a decade of this I hope that's what I do. 

Tuesday, 5 March 2019

Tiny Reflections


[Image: the tiny reflection of a woman can be seen in a mirror leaning against a white wall. Fairy lights hang down and a red covered chair with colourful cushions can be seen.]


Some days I’m not sure who I am. My confidence bottoms out and a state of ennui weaves its way into my heart. 

The directionless nature of Summer is always tough but this year we have reached Autumn with no end in sight. It stretches out longer and longer and my nerves are strung along with it. And I find myself with too much downtime. 

Life retreats to a small space the size of my bedroom, the whir of the air conditioner, and I lie still on top of the covers concentrating on existing. 

My mind runs and I find myself dissecting life and illness and how disability weaves through it all. It took me a long to work out I was disabled. Even longer to say it out loud. “Who was I to say I was disabled?” snarled the voice of my youth. Who was I to believe I was entitled to inhabit that space? 

Who was I?

These days the word disabled falls with ease from my tongue. Well mostly. Every now and then I get one of ‘those’ reactions. It hits me on a down day. Rips the scab off old internal narratives, pokes around in my past and screams denial and disbelief. 

I am forced to re-examine myself and my experience. 

Thankfully reserves built over the years from the support of friends, the warm arms of those closest to me, small, though palpable, changes in the way society views disability and the rising tide of disabled voices, allow me to see that false nature of the dangerous narratives carried by others. 

Each challenge knocks me down, then builds me up. I am stronger each time I raise my voice to challenge them. I re-examine my life, my experiences and myself and say no more. 

I will not listen to the naysayers. 
I will not allow them to go unchallenged. 
I will know myself and say, I am here. 
I am disabled. 
And I am proud.

Michelle


Thursday, 28 February 2019

Tripping the light fantastic

[Image: a black night fills the screen. The only features are a walking stick light, Michelle's red stockinged legs and the hint of hands and the rest of her body.]

Hello. Is anyone still there? I wouldn't be surprised if I am typing into an empty corner of the aether. There's a load of media to consume and a recalcitrant and inconsistent blogger doesn't hold any attraction in the fast-paced onslaught online. But if you've stuck around, big love to you. If there's no one there and I'm chatting to myself that's equally okay. I write to discover myself and the world around me. And that's a worthy enough goal.

It's been a while since I last published a post here on the blog. Life has been busy, Summer the hottest on record (still in the middle of a heatwave even though Autumn technically starts tomorrow), my brain mush.

I've immersed myself in Instagram. Photos seem easier. Ideas and aesthetics conveyed quickly when the words aren't necessarily there for me to access. I published a less polished version of this today over on Instagram. Words came early this morning, while my hair sat askew thanks to a hastily pushed up sleeping mask and the dried remnants of Mestinon drool still covered my lips and cheeks. I've learnt to take them when they come, wherever they come. Will I find my words again when the weather finally turns and the air no longer burns and the last dust and smoke of this Summer's bushfires is finally banished from the house? I'm not sure. I hope so. But until then I'll take the little moments and hold them tight. 

The photo above was taken after a date night. I asked Mr Grumpy to stop on the way home. There's a dirt road tucked away between cow paddocks, where we sat at OMG o'clock and watched the lunar eclipse last year. One of the boons of rural life is that light pollution is greatly lessened, even on the edge of town. So you can muddle your way down an uneven line of dirt under the direction of headlights, turn off the car and take photos with your lit up walkingstick and bright red stockings. Then tuck away the photo until it spurs some cogitations.

*****

Tripping the light fantastic.
My brain at night is not my friend. Insomnia and rumination run rampant. All the things must be dissected at 3am, never 3pm when the sun is shining and the busy murmur of nature sends its soothing tone through my body.

Possums rattle across the roof. The odd moo echos across still paddocks to land softly on my pillow. Creaks and cracks sound as the house releases the breath it has held all day while the oppressive heat of the Summer sun beat down. I focus on tracing the path of the possum as it rattles across the roof. All the internal things create their own rattle and it can become difficult to maintain my focus on the soft patter and loud thumps of landings overhead.
I don’t have this thing called life worked out yet. I push and it pushes back.
I feel the pressure on my brain as I roll over and grab my phone to check the time. I squint and tilt my head in the hope that the light won’t set off my internal wake-up alarm.

3am.
Of course, it is.
I lie back and resettle my eye mask. Release my breath in time with the movement of embracing walls. The possum or perhaps a neighbourhood cat, unsettles a group of minors that reside in our chalk-dry guttering. Their alarmed chirps burst forth and stop almost as suddenly.

Focus on the nightlife. Focus on the natural world that continues on while the human world attempts sleep. Focus on the adventures above my head until that noise cancels out the looped cacophony in within. Focus on the light in the night that quiets my mind. Focus on the light, trip and stumble. Finding my way back, quicker and quicker as breath evens out and head moves to slumber. Borrowing the moonlight to chase away my shadows, until consciousness slips away. Michelle

Thursday, 2 August 2018

Show and tell

[Image: Michelle, a white woman with red asymmetrical hair, sits in a red garden chair leaning towards the camera. Behind her, a red chook shed can be seen and a green bush is seen to the left of frame. Her right hand is holding a clear walking stick. She wears red accessories, black cats eye glasses and a green floral vintage-inspired dress.]



You can't miss my walking stick in the picture above. It may be clear but it still stands out. It is a thing of beauty. The bubbles floating throughout the clear lucite catch the light. Pop a LED in the base and it shines like a line of fairy lights. It sparkles in the sun. And showers the ground with the dots of light. It is a little piece of magic that I carry with me every day.

It can be seen in my photos. At times it is lying on the ground beside me. It leans waiting against tables, walls and doorways. It rides in the back of my powerchair, Lucille. I lean upon it. At times, on a good day, I use it as a tiny point of balance. Just enough to stay upright. A fraction of finger resting. Other times it is tangled in my dress, my legs, between chickens and dogs. A momentary photo caught before I end up on my bum or miraculously stay upright if with tweaked muscles and jarred and subluxated joints. It begins with practical usage and ends in an incidental point in the composition.

Similarly, Lucille, my powerchair, is present in photo after photo. It's hard to take her out of frame when my legs aren't playing ball or my blood pressure so perilous that standing is just asking for a topple to the asphalt. So instead she takes me down to the port to take photos by the boats. Or down to the wetlands so I can sit in my ball gown and Christmas decoration wearing splendour, gazing out over the reeds, trees, and marshlands. Like my walking stick, her everyday practicality makes her an incidental component in my photos, just like my life.

[Image: Michelle, a white woman with asymmetrical hair sits in her red powerchair on a curved wooden boardwalk. In the background tan reeds and grey-green gum trees can be seen. A dark stormy sky is threatening. She is wearing a red velvet and taffeta ball gown, black floral boots, fishnets, multiple rows of gold Christmas baubles, and black sunglasses. She is sitting with her right leg up on a wooden rail and the left leg bent down. She is pulling on the beads with her left arm and looking to her right.]


I have included my mobility aides in photos for years now. Initially not for any particular reason other than they were there at the time. Purely incidental to the image's intent. And to an extent, this has continued. Their incidental placement frequently occurs when I am taking photos for #UpAndDressed as they allow me to stand to show off a fabulous flared skirt, or roll to a great location.

Primarily I am taking photos of my outfits. Fabulous new dress? Photo. Mix and match from my wardrobe? Photo. Vintage? Photo. But in all my mobility aides are present. As are my compression stockings, bright or patterned. Incorporated into my overall look.

[Image: Michelle, a white woman with asymmetrical red hair, is sitting in her power wheelchair in an alleyway in between photo shoots. Ivy is covering part of the wall on the left of frame, trees, building and cars can be seen in the background along with a No Entry sign and 3 people. She is sitting side on to the camera and is wearing black cats eye glasses, a vibrant glittery green top with a bow, blue velvet shorts, yellow compression stockings, and blue velvet boots. She looks tired and flushed from the heat.] 

At times I am more overt in their placement. New walking sticks or fabulously coloured compression stockings must be shared. They can be hard to find so I want to let others know. Or I am clear and direct in my message (usually prompted by an unpleasant ableist incident) that there is nothing embarrassing about using mobility and other medical aides. That these aides make life easier, not harder. That it is not these aids that confine or bind, or mark us as less, but a society that views disability as less and access as an afterthought.


But more than anything it is that they simply are. Ordinary. Workaday. Average. With the odd bit of pizazz, but at heart a tool that solves an issue. They hold no implicit judgement except that which we place upon them.

Walking stick, wheelchair or compression stockings, are analogous to a pair of glasses. 

Walking sticks, wheelchairs, crutches, and walkers help with mobility.

Compression stockings help to keep the blood or other fluids flowing in our limbs.

Glasses help us see.

The only difference is that we continue to see glasses as a normal or even fashionable accessory, while mobility aides, compression stockings and other medical aids are seen as signifying an unpalatable difference. 



I would love to see other aids styled as these glasses are in the photos from the Specsavers catalogue below. Here glasses are seen as fashionable and importantly, desirable. They don't detract from the styling, instead, they are central to it. You can pick up a pair to suit your personal style whatever that may be. Fashion designers come forward to create whole lines. And yet at their heart, they remain a medical device.

Oh, how we could change perceptions of other mobility and medical aides if they were treated in the same manner.



[Image: a magazine sits open on a bench top. One page is a full page photo of a young white woman wearing glasses with beautifully styled make up hair and accessories. On the other page are a collection of other photos displaying fashion models with sunglasses and so black text on white in the middle.]


I now have the words to explain much of my initial rejection of mobility aids and compression stockings, internalised ableism. That negative societal attitude to all things related to disability that seeps into your psyche when you're not looking. It takes up residence to let you know all the ways you are less or weak, that disability is shameful and that we are naught but a burden. We are tasked with the job to overcome and live despite. To not allow disability to define us and never give in or up. It is mixed with a recognition that I long perceived mobility aids, any aids, as markers of my bodily decline. Very visible reminders that the little mind nugget labelled Hope of Recovery, would never be realised. And a medical perspective, common in chronic illness, that equates the use of mobility aides as failure or weakness of character, rather than a tool to increase functioning merely serves to cement the idea of failure and shame when they are needed. Most of what we are offered feels akin to carrying the bland clinical hospital with us. As is our weakness and shame don't deserve anything beyond bland greys and beige.

And where does that lead? For me and many others, it results in injury, a worsening of health, and increased isolation.

For a long time, I hated using aids. For a long time, I resisted their purchase. So much time wasted. And so much unnecessary burden added.

It's taken a long time to work my way through that narrative. In truth, it still rears its head on occasion. But I now find that those moments make me angry and more inclined to show them off. To celebrate my beautiful walking stick, to revel in the pops of red on Lucille's undercarriage, and purchase another bright pair of compression stockings.

These days my aides weave their way into my outfits. Part of the overall composition of my images. They don't hide away. And they are never cropped out. 

[Image: Michelle, a white woman with asymmetrical red hair, stands in front of a green brick wall. She is standing with a white walking stick. She wears black cats eye glasses, a red tartan dress, white with tiny black stars long sleeve sheer shirt, black sheer floral compression stockings and black ankle boots.]

When we whisper about disability and it's accoutrements the shame stays the same. If we never show ourselves to ourselves or others that shame takes root and makes it even harder to be in what is already a largely inaccessible world. When we never see possibilities beyond tired tropes and medicalised imagery, how do we change our views or the views of others?

The more we share our mobility and other medical aides without the shadows of shame, the more we care for ourselves and the more we care for others. Both those already using aides and those who will in the future. Together with the creation of our own content, we can move the narrative. Because:

We ARE 



and


There is 


and 

We are unapologetically visible. 

and we have


Choosing to be visible can be difficult at first. It can also have real consequences with regard to things like employment or relationships. But a quick check through the links above demonstrates that if you choose to be visible there is a huge community of people who have already made the choice who are there to support you and celebrate your choice. I am glad I found the community because it is they who continue to give me the confidence to tell society to suck it's negative disability narratives and just be myself.

My mobility and medical aides allow me to engage with the world. They let me go out to dinner, to a cafe, the library or the park. They let me feed my chooks and check the mail. They are both ordinary and amazing. And that is something to celebrate and share.

Michelle

I picked Madonna's Hung Up as the musical accompaniment for this post. I admire her reinvention, her staying power and her lack of fucks to give about what anyone thinks. She has always pushed boundaries and knows who she is. I remember when this came out and people mocked how she looked, ie she wasn't acting according to what people thought a woman her age should act or look like. Or when she was at the Met Gala and people were shocked that her bum was hanging out and there were cries about her being a mother and "won't somebody think of the children!" All throughout her career, she has had naysayers and detractors. Been told she was inappropriate, should be ashamed etc, and she just gives them a middle finger and keeps on being Madonna. Her self-confidence and ability to challenge the status quo is something I aspire to have one day.

Saturday, 7 July 2018

When the pickings are slim a single jumpsuit feels like a miracle. The state of accessible fashion in Australia.

[Image: two smiling women wear pastel tie-dyed jumpsuits. The dark-haired woman at the rear of the frame is standing and wears cat ears. The blond-haired woman sitting is sitting in a wheelchair. source: ASOS]

Yesterday fashion juggernaut ASOS released a two-piece waterproof jumpsuit designed in conjunction with BBC reporter, para-athlete and wheelchair user, Chloe Ball-Hopkins. The cut of the pastel tie-dye extravaganza designed specifically with wheelchair users in mind. And at £50 ($AU89.42) a midrange price point not uncommon in general fashion.

And the internet exploded.

I too was excited to see the images and to discover that the item was designed with rather than for a disabled person. Even simply seeing the item modelled on a seated body was incredibly powerful in an industry where such images are rare. As UK blogger Shona Louise pointed out in a recent piece for Scope, clothes both in advertising images and on the mannequins that fill bricks and mortar stores use standing as the default body position to display clothing. This despite that fact, not only for those of us who use wheelchairs, but non-disabled people sit at work, when out for dinner, at a cafe, the movie theatre etc. And clothing that sits well on a standing body, does not always translate to sitting well on a seated body.

But it's hard to move past the underlying current that this single item is currently so rare in the international fashion landscape that disabled people are overwhelmed with joy at a single item that non-disabled consumers have long taken for granted.

While I applaud ASOS for the creation of this item and for the earlier inclusion of disabled model Mama Cax in their activewear campaign, I am also cognisant that this is a single item in the catalogue of a brand that includes tens of thousands of items. A range similar to the recently release Tommy Adaptive line by US brand Tommy Hilfiger would be far more welcome for its clear dedication to designing for a range of disabled bodies and different style needs rather than a one-off item. As my original excitement had worn off I find myself approaching this development with cautious optimism. While I hope that this potential represents ASOS's tentative attempt to clarify if a market exists and is financially viable (understandable at a business level); I am also reminded of the track record of many companies across multiple industries who fail to follow through once the original clicks and brand enhancement dies down.

Such rarity in inclusive designs within the industry is not uncommon. While there are brands specifically designing with disabled bodies in mind, even these represent a very tiny segment of the international industry. And as a recent article in The Guardian pointed out, there are currently more clothing labels for dogs than there are for disabled people.

At present, most of the adaptive clothing product range available through the Australian market give an impression of an afterthought. Choices are limited to shapeless, uninspiring designs that fail to understand the varying style choices of disabled people. Even accessing these items independently can be fraught with gate-keepers who don't expect disabled people to be purchasing these items themselves. Having purchased medical grade compression stockings both locally and from overseas companies, many interactions are paternalistic and disheartening. Overly complicated and the underlying theme from some distributors is that personal inquiring is somehow problematic and that it is preferable for them to deal with organisations rather than those who wear the products.

Whether the industry sees the inclusion of disabled people and adaptive and inclusive design as too hard, not financially viable, or they simply cannot envision disabled people enjoying fashion and the self-expression and creative aspects of clothing, or we are simply not on their radar, the result is the same. Little to no adaptive fashionable designs in the Australian industry and little to no disabled representation in fashion media. In a world of aspirational advertising, it would seem that visibly disabled bodies are thought to not meet the brief.

As a group, we have learned to adapt available clothing to our needs. We are resigned, if not also frustrated by, poor fit, uncomfortable seams, closures that aren't fit for purpose, and frequently a lack of style. We get clothes re-cut or adjusted or simply go for comfort over any desire to express ourselves through personal style. For some members of the community, it is others who make their clothing choices. With convenience and ease, a more prominent factor in purchasing choices. A quick scan of local suppliers of adaptive clothing reveals little choice and an expectation that such clothing is only of use to older age groups. Though even that design style seems to be stuck in out-dated ideas of what constitutes fashion for an older population. In addition, when organisations have been responsible for purchasing low cost takes preeminence over every other consideration. This disconnect between the end user and the manufacturer lends itself to a perception that fashion doesn't matter to disabled people when in truth it is a lack of choice that is problematic.

I've written previously about the inclusion of disabled models and fashion that has been seen overseas and it's hard to understand why the local industry has failed to jump on this underserved, and as is demonstrated by the reaction to the latest ASOS item, a sector of the community desperate for options and willing to spend.

Recent modelling puts the international inclusive fashion market at US$278.2 billion in 2018 and expected to rise to US$325.8 billion by 2022. With local fashion brands, including well-established brands closing their doors, looking to the inclusive fashion market as an option to expand the brand and increase revenue makes financial sense. With many purchases already being made online from overseas manufacturers, well made, inclusive fashion lines, along with the well-documented loyalty of disabled communities, could potentially provide not only new local markets but the ability to tap into an international market of approximately 1 billion people.

"Coresight Research estimates that the global market for adaptive apparel, accessories and footwear will total $278.2 billion in 2018 and grow to $325.8 billion by 2022 (our estimates are conservative because the World Health Organization’s figures do not include children with disabilities under the age of 15)."

Glasgow based Vanilla Blush is an example of a fashion brand understanding that style and the practicals of adaptive fashion aren't mutually exclusive and can be profitable. The lingerie and now swimwear (soon to also include activewear) brand run by Nicola Dames creates pieces for those living with a stoma. The brand now with an 80% profit margin and annual sales of £500,000 (AU$ 894,214.61) demonstrates what is possible when a designer recognises and understands their market. Their commitment also goes beyond products on the shelf to working with UK universities to understand the psychological impact these types of items have on the psychological well-being of those who use them. Similarly, Belgian-based brand INGA Wellbeing are working with another two UK universities, London College of Fashion to understand the effect clothing has on recovery from serious illness.

Both of these companies are demonstrating a genuine commitment to the population of consumers they serve and recognise that just because an item may represent a practical need the need for fashion doesn't evaporate. Instead, it becomes innovative. It can also have a profound effect on the mental wellbeing of thse who wear these pieces.

"You don’t have to be a fashionista to know that what you wear impacts how you feel about yourself. Yet, fashion is unrepresented in contemporary psychology.' - Dr Liza Morton

New York's Open Style Lab (OSL) is a model that Australian fashion design schools could learn from and implement. Established in 2014 OSL is dedicated to the development of fashionable clothing options for disabled people. They work with disabled people, occupational therapists and engineers to develop innovative fashionable clothing designs. The group aims to increase awareness of the need for accessible clothing, equipping their community with the skills to develop accessible designs and to develop and distribute designs and technology that will increase clothing accessibility. As reported in Vogue last year OSL take a leap to liaise with their clients and understand their needs. Although the report's headline suggests that they are designed for disabled clients, the reality is that the organisation employs a clear design philosophy of with; 

“We talked a lot about the user experience, asking clients what subway line they take, how they navigate New York City, and what their day involves, to [reinforce] that design is a holistic process.” One client wanted a formal jumpsuit for her frequent dinner parties and events; another needed a tailored jacket to wear to an upcoming wedding; and two asked for rain jackets." 

Liz Jackson's piece for the New York Times, also demonstrates the potential benefits brands would have in employing and collaborating with disabled people. The opportunities for innovation and a point of difference, both of which can secure a market niche, are elements such collaboration can bring. Living in a largely inaccessible world disabled people become natural innovators as we modify existing items or create new ones to be able to undertake tasks in our lives and this also translates to the clothing we wear.

At a time when many Australian fashion labels are closing their doors surely thinking outside the established box, a look to new markets makes logical financial sense. Add in the opportunity for innovative design that would serve all sectors of the community and the potential market opportunity increases further. As the aforementioned piece by Liz Jackson mentions, many items in general use in the community began their life as an innovative disability-related product. Accessibility be it within the fashion industry or other aspects of life enhances the experience of the whole population not just the disability comunity.

The first Australian fashion brand to demonstrate a genuine commitment to the disability community will tap into a largely underserved, and as the recent ASOS experience demonstrates, willing to spend, market.

If one jumpsuit can make the international disability community so excited imagine the buzz and financial potential that a complete line of adaptive clothing could create both here in Australia but also internationally.

It's time for the industry to step up and embrace innovation and inclusive design principals. To include us from the beginning of the design process, on the cutting room floor, on the catwalk and advertising, through to ensuring accessible shop fronts and change rooms. To do less will leave the industry behind and our dollars flowing to overseas brands who are actively engaging with the disability community.

Michelle

Friday, 8 June 2018

Finding a Moment

 [Image: a woman's pink and purple-clad legs and pale feet can be seen lying on a fluoro green yoga mat on a green lawn. She is lying in a backyard and a brown brick house, hedge, white plastic chair and pot plants can be seen in the background. To the left of the mat, a clear walking stick can be seen. At the foot of the mat four chickens, two gold, one white and a large brown and gold, are moving towards the woman's toes.]


I'm up and dressed today and then I'm not. I have pushed too far and finally landed on my bum. My descent to the kitchen floor a tangible reminder that my body continues doing as it pleases. I am over it. Adrift and finding it difficult to navigate a path out from the familiar exhaustion and wave of ennui that has made its presence known repeatedly during the past 12 years of illness.

I'm not one to do New Year Resolutions but somehow I've found myself needing to just do. There's been no real thought about the doing. What shape it'll take or how long I'll keep it up. But it's happened all the same.

Summer is not my time of year. I am an Autumnal spirit and with the practicalities of my body, the milder days of golden leaves are the only time of year I feel somewhat myself. So finding a tug to motion in the midst of clear hot days left me in unfamiliar territory. On reflection perhaps that was the key.

I'm an all or nothing kind of gal. Pacing is still not my friend and I often find myself taking photos in the morning and in bed by mid-afternoon, sore from exercise and connecting my left bum cheek to my thankfully cleaned-yesterday tiles. I have been getting #upanddressed more often than not. Spurred on by participating in a Shop Your Wardrobe project, #syw18. And I have been doing yoga every morning as part of Yoga with Adriene's 30 Day Yoga Program: Truth.

I get up, slug down coffee and meds, and try to find a spot in the backyard where there is a patch of shade and less chook poo (free-ranging your chickens has a downside). I smother myself with Bushman's in the hope of keeping the Australian Summer fly invasion at bay and lay down on my beaten old yoga mat.

And now I find I've made it to day 30 doing as much of the program as I can and lying in Child's pose when I cannot. My chooks dance around the mat. Their inquisitive noises drowning out much of the native birdsong and frequently, the voice emanating from my phone. A surprise early on, in the form of a large steaming chicken present deposited on the mat, has me leaving one eye open every time I am instructed to close my eyes and think about my breath.

This routine is more the unexpected development of a moment each day rather than a prescriptive completion of a yoga session. The 30-day program continues on whether I turn up or not. And some days I haven't. Life happens. Visitors come. After an overly eager attempt at yoga followed by making a brunch for my family I ended up a tangled mess of limbs on my bed, the rest of the day and part of the next lost to the oblivion of coma sleep. So I do or don't do depending on what is happening with fickle flesh and bone.

But I miss it. Not necessarily the cautious stretching of limbs and still awkward poses, but the moment. The part that is calling to me, leaving me itching to grab my old green mat and head out the back door headless of the state of my body, is the small patch of life outside my backdoor. I find myself concentrating on my breath and slowly relaxing and then the natural world begins to find it's way in. I often complain about the sterile world that is the housing estate in which I live. My barometer for nature is heavily skewed from years lived on the outer edges of temperate rainforest and national park. While I have no echidnas in my backyard and my heart still aches for the two-story tree ferns whose dust I once bemoaned as it found it's way through even closed windows in our rattly old house, there is still nature here.

[Image: a view of a small part of my backyard. Green hedges, grass and gum trees. Our aquaponics and blue sky. Pops of red can be seen in the firm of my umbrella and the geraniums and my yoga pants]

While I lie on the mat, eyes closed forehead to the mat, and arms outstretched I hear it all around me. The bees and multitude of other flying insects create a hum that underlies all other noise. There are large groups of birds flying overhead towards the large dam on the floodplain come cow paddocks the next street over. Red-wattle birds bathe and snap in Freyja's water bowls or sit chartering in the boughs of our neighbour's gums. Various wrens bounce delicately around the yard finding safety in the bushes along the fence line, along with the native blackbirds who enjoy the safety of tight twigs after digging in amongst my veggies. Magpies sing and crows set the chooks into fearful alarm. The cacophony of life swirls around me.

Place my mat near the small patch of the dappled shade of the gums and warmed eucalyptus swims in my nostrils while small gumnuts rain on my prostrate body. Gumnuts, natures Leggo. A body's weight focused on a knee under which a tiny wooden caltrop has made its resting place is not one I'd recommend. But the smell of the oils and the sound of the wind through the leaves are like a drug lulling me to quiescence.

And always there are my chooks. Never content to leave me alone on the mat, especially when there's a chance I may have treats tucked away somewhere between pasty skin and colourful lycra. While my toes are nibbled or the mat pecked the constant inquisitive cooing is hard to not love. They have unique personalities all of which are reflected in their interaction while I am at their level. Evie II is incredibly inquisitive. In my face attentive as I speak to her. Gloria, in her senior years, has taken a liking to my purple toes. Lola engages in drive-bys demanding treats or strutting beneath my downward dog. Little Blue and Zsa Zsa wouldn't spit on me if I was on fire and rarely come close unless there are treats which they'll deign to eat from my hand before treating me with disdain once more. Rose is oblivious. She might follow the others as they run over for an initial investigation into the possibility of treats, but if none arise she's gone back to investigating the rest of the yard or kicking my garden beds all over the lawn. And so it is each day. My feathered girl gang part and parcel of the experience.


[Image: 3 chickens can be seen at the foot of green yoga mat which has a woman's pasty feet at the end. They are all on the lawn. A brown brick house and general yard junk can be seen in the background.]

And then there's Freyja. My every present shadow who cannot understand why she can't lie on the mat. Who slowly rolls her weight onto my head as I lie in savasana. Who snuffles my face or ear while I try to concentrate on my breath. I breathe in her comforting doggy smell. My nose wrinkles at her need for a bath and breath that tells me once more that she has been hoovering chicken poo and other rancid treats, but it is familiar and calming nonetheless. My constant companion of 9 years and after last years stress and heartache I'll take every gag-inducing whiff. I can't move her heavy body with my weak arms so I endure the press of hot fur with half-hearted irritation. She has brief, seemingly uninitiated, moments of excitement that leave me pummeled with long limbs and broomstick tail. Before, energy spent, she returns to her passive encroachment on lurid green rubber.


[Image: a large merle Great Dane snoozes with her head and foot on the side of a green yoga mat. A woman's pale feet can be seen. She wears black pants and a grey top. In the background the besser blocks supporting the bottom of the aquaponics system can be seen.]

I hear the quiet Namaste from my phone and the short burst of music. I can't move. In truth, I don't want to. I want to hold the moment for as long as possible. Before the outside world encroaches and I have to engage with the day to day.




I'm trying to carry it with me. Some days are easier than others and some it's simply not possible. I sit here months later as Winter begins. Lying in the backyard is exhausting though I still try to find the moment in shorter and shorter forays. I've had a tough couple of months but the pull remains.

Now I am surrounded by ruffled chicken pom-poms who fluff and brace against the wind, and Freyja refuses to come outside for more than dinner and a pee. I add layers and mugs of steaming coffee. The buzz of insects is lost in winds filled with Southern ice and the enthusiasm of the local birdlife muted until they chatter on their way to evening roosts. Every now and then I pull out my mat and just sit. It's enough at present to simply allow the echo of the Summer ritual embrace me.



Michelle